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ASHLAND THEOLOGICAL SEMINARY

A VIDEO RESOURCE FOR TEACHING MEDITATIVE PRAYER IN THE

CHRISTIAN TRADITION TO PEOPLE LIVING WITH TOURETTE SYNDROME

A DISSERTATION SUBMITTED TO

THE FACULTY OF ASHLAND THEOLOGICAL SEMINARY

IN CANDIDACY FOR THE DEGREE OF

DOCTOR OF MINISTRY

BY JEROME BEERS

ASHLAND, OHIO

NOVEMBER 12, 2020

To my precious son, Jesse James Beers, living courageously with Tourette Syndrome

Contemplative prayer is primarily a prayer of the heart.

It is a cry de profundis, out of the deep.

A recondite connection is formed between the human soul and the Divine Spirit which transcends the physical plane.

Olivier Clement

APPROVAL PAGE

Accepted by the faculty and the final demonstration examining committee of Ashland Theological Seminary, Ashland, Ohio, in partial fulfillment of the requirements for the Doctor of Ministry degree.

______

Academic Advisor Date

______

Director of the Doctor of Ministry Program Date

ABSTRACT

The purpose of this project was to create a resource on spiritual exercises that would provide support for families participating in the Pennsylvania Tourette

Syndrome Alliance. The design of the project was to survey a panel of experts.

They were given access to the resource and directions in how to use it. A set of statements and open-ended questions were provided for them to record their impressions.

The results of the project revealed positive reviews by the experts. They recorded strong affirmation that the goals of the project were achieved.

CONTENTS

LIST OF TABLES ………………………………………………………… vii

ACKNOWLEDGMENTS …………………………………………...... viii

Chapter

1. INTRODUCTION AND OVERVIEW ………………………… 1

2. BIBLICAL, THEOLOGICAL, AND HISTORICAL FOUNDATIONS …………………………………… 27

3. REVIEW OF THE LITERATURE ……………………………. 72

4. DESIGN, PROCEDURE, AND ASSESSMENT ……………. 104

5. REPORTING THE RESULTS ………………………...... 116

6. SUMMARY AND REFLECTIONS …………………………… 138

Appendix

1. PROPOSAL ………………………………………………………. 168

2. ASSESSMENT TOOL …………………………………………… 195

3. RESOURCE CURRICULUM GUIDE …………………………… 201

REFERENCES.……………………………………………..…………….. 203

LIST OF TABLES

Table 1. Goal #1: Interpersonal Challenges of Person Diagnosed with Tourette Syndrome …………………………………………………. 117

Table 2. Goal #7: Preparation for the Day Spiritual Exercise for Person with Tourette Syndrome …………………………………………………. 119

Table 3. Goal #9: Pursuing a Connection with God through Prayer for Tourette Syndrome Family ……………………………………………… 121

Table 4. Goal #8: End of Day Spiritual Exercise for Person with Tourette Syndrome …………………………………………………. 122

Table 5. Goal #2: Interpersonal Challenges the Family of a Person Diagnosed with Tourette Syndrome ……………………………………. 124

Table 6. Goal #5: Responding to a Tic Episode through Spiritual Exercises …………… 126

Table 7. Goal #4: Increasing Positive Communication within the Family that has a Member with Tourette Syndrome …………………. 128

Table 8. Goal #3: Assisting the Person with Tourette Syndrome to Express Feelings to their Family ……………………………………….. 130

Table 9. Goal #6: How Families may Provide Emotional Support for the Person Living with Tourette Syndrome ………………………………… 131

Table 10. Composite Scores for all Goals ………………………………………… 133

vii

ACKNOWLEDGEMENTS

This resource and project are the culmination of a twenty-five-year odyssey. Some have walked the whole path with me, while others have made significant contributions at key moments. I am deeply grateful to each person who supported me, named and unnamed.

To Dr. Terry Wardle, whose teaching introduced me to deeper levels of ministry in the power of the Holy Spirit.

To Dr. Anne Halley who may not know the powerful ways Jesus healed me through her class.

To Dr. Dawn Morton who kindly motivated me at critical junctures.

To Dr. Shane Johnson, my advisor and patient guide.

To Dr. David Babb, my Field Consultant who listened gracefully to my initial presentation and supported my sojourn.

To my Wellspring Wesleyan Family and Pastor Dawn Glatfelter who lavished me with grace.

To Carolyn Brown who connected me to educational experts.

To John and Carole Beers and Jim and Audre’ Nelson, Jesse’s grandparents who prayed relentlessly for him and me.

To Josiah, Jael, and Jerome, my children who know the joy and the pain.

And their spouses and children who joined the journey.

To Julie Beers, my life partner who first encouraged me to begin this quest and stood by me every step of the way.

To the Father, Son and Holy Spirit, my Healer, and my Hope.

viii

CHAPTER ONE

INTRODUCTION AND PROJECT OVERVIEW

After a long and arduous journey, my son Jesse graduated from high school. He has a job, but not a driver’s license, therefore he walks to work every day. His route takes him through a bank parking lot where he recently experienced a tic explosion. He stood outside the financial institution shouting and jerking.

The bank tellers noticed his activity and assumed he was either mentally ill, dangerous or both. They quickly called 911 and summoned the police. Jesse has Tourette Syndrome, a condition which causes him to have motor, vocal and mental tics. Tics are involuntary movements, sounds or thoughts which manifest themselves in his body and mind. Sometimes the tics are loud and violent.

People who witness them are often shocked, confused, or frightened. And tics are only the tip of the iceberg. Tourette Syndrome has twelve common associated disorders which include ADD, OCD, ADHD, executive dysfunction, sensory issues, perception challenges and more. Jesse has been diagnosed with eleven of these conditions.

A manager and other employees emerged from the bank. From a distance, they informed Jesse that the police were on their way then disappeared back inside. Jesse’s mind swirled with a bevy of thoughts.

“Should I go in the bank and try to explain?”

“Am I going to get arrested?”

“This is so unfair.”

“I’m going to be late for work.”

In his short life Jesse had already been picked up four times by the police for Tourette’s related incidents. Twice they had driven him to the station. Each time they were understanding but the ordeals were still stressful for a young boy.

Now he stood in a bank parking lot awaiting another encounter with law enforcement. Between tics, he managed to call me on his cell phone.

The moment I answered I could hear vocal tics and sense the panic in his voice. I immediately and gently directed him toward a meditation practice called,

“The Three R’s.” Jesse sat on a parking curb and took several deep, cleansing breaths. He focused on my voice as I quietly encouraged him to close his eyes and rest in the Presence of God. Rest is the first of the three R’s. I spoke the promises of Scripture over Jesse, words of assurance, of peace, of support.

Next, I invited him to see Jesus coming toward him. I asked him to intentionally open his heart and mind to receive the love of God. I could hear his breathing stabilize. His tics were beginning to dissipate. Finally, I encouraged

Jesse to respond to God with words of gratitude. He began to whisper thanks for the loving care of Jesus. By the time the police arrived, Jesse was comfortable, controlled and prepared to be his own advocate.

Later that day, the bank met with my wife Julie, myself, and Jesse to apologize for their misunderstanding. We saw it as another beautiful teaching opportunity. Now when Jesse strolls across the lot, the tellers wave from the window. This project is committed to the use of Christian meditation as an efficacious response to the many struggles of Tourette Syndrome.

Purpose Statement and Research Question

The purpose of this project was to create a resource on spiritual exercises that will provide support for families participating in the Pennsylvania Tourette

Syndrome Alliance. The research question was: In what ways does this resource on spiritual exercises provide support for families participating in the

Pennsylvania Tourette Syndrome Alliance?

Overview

The focus of this project was to create a resource on spiritual exercises that provides support for families participating in the Pennsylvania Tourette

Syndrome Alliance. Tourette Syndrome is an inherited, neurological disorder characterized by tics – involuntary, sudden movements, or vocalizations that occur repeatedly. There are as many as twelve identified comorbid conditions associated with Tourette Syndrome. These Other Health Impairments (OHI) include ADD, OCD, ADHD, sensory issues and more.

The resource consists of five animated videos, five discussion guides and five meditation podcasts. The user begins by viewing an animated video dramatizing a particular challenge for a person living with Tourette Syndrome. By following the daily life of a boy named Jesse, the viewers encounter various scenarios common to Tourette Syndrome. Educational information, response strategies, feelings and difficulties are enacted through the videos. Common vocabulary words associated with Tourette Syndrome are defined. The videos are intended to be viewed by the diagnosed individual, their family, a school or church class or other social groups. It is designed as a community activity.

The second piece is a Question and Answer discussion guide developed to educate, facilitate communication, and encourage empathy. The facilitator leads the conversation and is provided the questions, answers (where appropriate) and additional prompts and explanations. Some questions are specific and relate to the characters and events in the story. This provides a non- threatening, positive and factual way to begin the conversation. Questions then probe deeper into the feelings and experiences of the individuals watching the video. The leader is given direction on how to elicit deeper level communication from the group.

These two elements (the animated video and the discussion guide) serve as a platform for the final component; a podcast of the author leading a meditative prayer exercise. Students are guided through a meditation connected to the challenges they have observed in the video. The experience is participatory, detailed, and simple. The listener is taught basic elements of relaxation and centering. They are gently and verbally escorted through a Bible story, Scripture text or Christian prayer. Some minimal physical responses are included such as breathing exercises, placement of hands or stretching. An instruction guide, scripts and additional information are included to lead viewers and facilitators as to the purpose and use of the material.

Foundation

The Beers family journey with Tourette Syndrome taught us that tics are only a portion of the disability. Parents Jerome (Jerry) and Julie, siblings Josiah,

Jael and Jerome and diagnosed son, Jesse went on decade long quest to find

hope and wholeness. The emotional, relational, social, and spiritual impact of

Tourette Syndrome and its comorbid conditions is acute. Families wrestling with these issues are often fraught with denial, conflict, and discouragement. Despair and hopelessness may set in.

We do not know exactly how many people have Tourette Syndrome. A

Centers for Disease Control and Prevention (CDC) study found that 1 of every

360 (0.3%) children 6 – 17 years of age in the United States have been diagnosed with Tourette Syndrome based on parent report; this is about 138,000 children (Bisko et al. 2014, 317).

Other studies that included children with undiagnosed Tourette Syndrome and children with diagnosed Tourette Syndrome have estimated that 1 of every

162 children (0.6%) have Tourette Syndrome. This suggests that about half of children with Tourette Syndrome are not diagnosed (Bisko et al. 2014, 317).

Among children diagnosed with Tourette Syndrome, 37% have been reported as having moderate or severe forms of the condition (Bisko et al. 2014,

317). Boys are three to five times more likely to have Tourette Syndrome than girls. People from all racial and ethnic groups can have Tourette Syndrome. Non-

Hispanic white children are twice as likely to have a Tourette Syndrome diagnosis as Hispanic and non-Hispanic black children. Children 12 – 17 years of age are twice as likely to have a diagnosis of Tourette Syndrome as children 6 –

11 years of age (Bisko et al. 2014, 317).

The foundations offer a succinct account of our family’s experience with

Tourette Syndrome. They include a brief summary of the biblical and theological

view of weakness or disability and the use of meditative prayer as a response.

The historical foundation focuses on the use of contemplative prayer by the fourth century church fathers. Finally, the contemporary foundation features current thinking on mindfulness and meditation as strategies for ameliorating the impact of Tourette Syndrome on individuals and their families.

Personal Foundation

My youngest son Jesse has Tourette Syndrome. Living with verbal, motor and mental tics has impacted his life significantly. Jesse bears the greatest burden of his disability, however, everyone in his life is affected. We have a saying in our home, “If one member of the family has Tourette Syndrome, everybody has Tourette Syndrome.” Our son’s journey has connected us to many individuals living with Tourette Syndrome and their families.

Jesse has endured multiple approaches to dealing with tics and their emotional and psychological impact, including counseling, a variety of therapies, numerous medications, dietary and exercise programs, and homeopathic remedies. For him, the most efficacious practice in coping with tics and embracing a life with Tourette Syndrome has been prayer. Jesse has functioned without medication and independent of counseling for the last seven years. He enjoys a good quality of life and has been married for almost two years. This project will seek to extol the use of meditative prayer in the Christian tradition as a means to improving the quality of life for other people living with Tourette

Syndrome.

Our family has been actively involved in serving the Tourette Syndrome community for more than a decade. My wife, Julie, was a Tourette Syndrome advocate with PATSA for several years. She traveled the commonwealth of

Pennsylvania making presentations in public and private schools, college classrooms, nursing education programs and medical seminars. In 2016 we launched a non-profit called Disabled by Love, for the purpose of serving the

Tourette Syndrome community. We have led workshops and seminars as individuals and as a family. We care deeply for the individuals and families impacted by Tourette Syndrome. We desire to bring a healing, life-giving opportunity to them.

Biblical Foundation

The biblical foundation was built upon two scriptures from the writings of

Paul. The first was,

Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (2 Cor. 12:9b-10 NIV). (Unless otherwise noted, all scripture references are taken from the NIV – New International Version.)

The second text was

And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. (Eph. 3:17b-21 NIV)

Living with a disability does not mean living a disabled life! In fact, the

Apostle Paul suggests it may even be the doorway to a more powerful and useful life.

The bodies we inhabit and the lives those bodies carry on need not be perfect to have value. Bad things do happen, we know, to bad and good people alike, but so do good things. Life’s curses, like life’s blessings, are always mixed. (Mairs 1990, 130)

The Apostle Paul explains that a messenger from Satan was sent to buffet him. (2 Cor. 12:7). Although he has repeatedly prayed for deliverance, God’s answer has been to sustain him in his weakness. Paul boasts and even takes joy in the way Christ’s power is revealed through struggle (2 Cor. 12: 7-10).

The theological point that Paul makes here-that Christ will take up residence in him when he is weak-is analogous to a statement Paul will make about Christ in 13:4, ‘For indeed he was crucified by reason of weakness, but he lives by reason of the power of God.’ Thus, just as the power of God took up residence in the weakness of Christ, so the power of Christ now takes up residence in the weakness of Paul. (Matera 2002, 285)

Paul details his practice of boasting in weakness because it is the very place where Christ’s power is most evident. His final acknowledgment of weakness is a recitation of deep personal self-disclosure. This is the immediate context for the passage chosen for this paper. He recounts a profound and intimate spiritual experience he enjoyed fourteen years earlier. He shares the narrative in third person because of his reluctance to speak of special gifts and graces in his own life. “Moreover, in an ecstatic experience a kind of retreat of the ego, with the consequent possibility of objectification, is supposed to occur”

(Lambrecht 1999, 200).

Due to this experience, Paul was vulnerable to pride. He could have felt he now had some special standing. But God acted to protect him from himself.

Barrett paraphrases Paul’s description; “Because the revelations were so marvelous, God took steps to see that I should not be unduly exalted” (Barrett

1973, 313). This is, “God’s care for him,” because he needs it due to his weakness (Lambrecht 1999, 203)! Paul admits, “Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me” (2 Cor. 12: 7b).

People with Tourette Syndrome understand and experience what it means to live with a chronic condition that is beyond their control. Tourette Syndrome is an inherited, neurological disorder characterized by tics – involuntary, sudden movements, or vocalizations that occur repeatedly. Tourette Syndrome cases range from mild to severe. Most cases fall somewhere in between, requiring some level of assistance such as advocacy, medical treatment, counseling, social skills training, accommodations and/or learning supports. Tourette Syndrome is considered a lifelong disorder. (PA Tourette Syndrome Alliance)

Paul’s experience provides a biblical foundation for addressing Tourette

Syndrome through meditative prayer. He offers a case study for a Christ follower who is hampered, even disabled by an inveterate plight. Barnett suggests our lack of certainty as to the true nature of Paul’s condition is providential. “The very openness of the identification allows wide possibilities of personal application to a broad range of personal suffering, which precise identification might limit”

(Barnett 1997, 570).

The Tourette Syndrome sufferer can find an empathetic companion in the

Apostle Paul. They can identify with one who lives with constant difficulty and discover a hopeful example of how to find purpose in one’s plight. Paul declares

repeatedly that when he is weak, he is strong. He will boast in this weakness because that is when the power of Christ dwells in him.

The paradox of the gospel Paul proclaims reveals how power has been made most effective in and through the weakness of the cross. Making use of a purpose clause, Paul begins by explaining why he gladly boasts in his weaknesses: so that the power of Christ might dwell in him. (Matera 2003, 284-5)

How did Paul respond to his weakness, his thorn in the flesh? He prayed!

“Three times I pleaded with the Lord to take it away from me” (2 Cor. 12:8). We will soon learn that God does not remove Paul’s chronic condition. The idea that his prayer appears unanswered, at least in the way he requested, is another sign of weakness. He boasts not in some miraculous healing, but in the harsh reality that he has been required to continue suffering.

Ephesians records another prayer of the Apostle Paul. This time he is not seeking personal healing, but rather, is interceding on behalf of other believers.

He prays that his readers will experience a deeper revelation of the love of God.

That they will come to understand the vast expanse of God’s affection manifested in Christ and the power it provides (Ephesians 3:17b-21 NIV).

Paul here emphasizes that the experience of the vast love of Christ is not reserved for some category of special saints, but that every person can apprehend this love as their own. It is an experiential knowing that would be impossible apart from the Spirit. It is through His illumination that this transcendent mystery is discerned (Simpson 1957, 80).

The train of thought in Paul’s prayer can be integrated into Christian meditative practices for people living with Tourette Syndrome. His affirmation is

that an episodic encounter with the love of Christ is an empowering experience.

Coupled with his view of strength in weakness, this love becomes the source for victorious living.

According to the Pennsylvania Tourette Syndrome Alliance, some of the challenges Tourette Syndrome sufferers encounter are: Mental tics, waxing and waning of tics, and tic explosions (Pennsylvania Tourette Syndrome Alliance).

Drawing upon Paul’s prayer in Ephesians, I propose using the Three R’s meditation and other contemplative practices as a form of preparation, intervention, or recovery from the various scenarios detailed above. The Tourette

Syndrome sufferer (and their family) can be taught to center themselves through cleansing breaths. They can still their minds by resting in the love of Christ.

Theological Foundation

The theological foundation considered two great themes: discovering the power of God in weakness and experiencing transformational love in Christ. Both are predominant motifs in Paul’s writings. He marries them in his understanding of suffering.

Michael J. Gorman says, “Paul was nothing if not someone overwhelmed by the love of God. He experienced this divine love, according to his letters, in

followers, seeking their edification and present in their struggle. Those, like Paul, who experience this love, become not just receptacles for it, but conduits. Christ loves others through them (Gorman 2001, 155).

Gorman submits that Paul writes of suffering as a manifestation of love.

“For those who confess the love of God in the death of Jesus, two existential corollaries automatically follow: suffering for others is inevitable, and suffering for others must be motivated by love for it to be worthwhile” (Gorman 2001, 199).

Gorman identifies four ways Paul seeks to live this premise out. He endures his own suffering to identify with and reveal the non-retributive love of God in the death of Jesus. It serves as a badge of accreditation and honor in his role as an

Apostle. It demonstrates his sacrificial mindset in being willing to lose everything, including his life, for the salvation of others. And it means that Paul experiences and models the reality that in spite of, nay, because of suffering, he knows the deep love of God in Christ through the Holy Spirit (Gorman 2001, 200).

Gorman emphasizes that the suffering need not be directly related to persecution or pain due to proclaiming or living out one’s Christian faith. The power of Christ is manifested in any and all types of suffering; including physical or neurological disability. Gorman insists that what is critical is not the reason for or nature of the suffering, but the working of the Holy Spirit in it. The person born with Tourette Syndrome may embrace this weakness as an opportunity to boast in the power of Christ. Their capacity to trust, to endure and to praise in the midst of perpetual difficulty is a powerful witness to Gospel (Gorman 2001, 289).

Gordon Fee posits that Paul sees the in-breaking of the love of God and the power of the Spirit as an experience of the age to come. This is why Paul is able to balance the tension between hope and suffering, between promise and difficulty. “Present suffering is a mark of discipleship whose model is our crucified

Lord. But the same power that raised the Crucified One from the dead is also already at work in our mortal bodies” (Fee 1996, 145).

Fee notes that Paul prayed earnestly for the removal of the thorn.

However, God’s response was to meet him in the suffering. Paul’s experience reveals that prayer is not presenting a list of our needs and desires and is even more than a cry of desperation.

Prayer is activity inspired by God himself, through his Holy Spirit. It is God siding with his people and, by his own empowering presence, the Spirit of God himself, bringing forth prayer that sin keeping with his will and ways. (1996, 149)

Paul had a long-term problem which remained unresolved, Fee notes. Yet, it would not be accurate to say he was unhealed. He had discovered many benefits and blessings in the midst of his hardship. Emotionally, Paul was at peace with his condition. Spiritually, he valued and delighted in the loving

Presence of Jesus he found through it (Fee 1996, 149).

In The Disabled God, Nancy Eiesland has envisioned an understanding of

Jesus rooted in his resurrected but still scarred body. As the disabled God, he does not strive to dominate and he is not simply the heroic, suffering servant.

Instead he is symbolically and bodily present with the marginalized. This reality repudiates the ancient and stubborn conception of disability as the result of

personal sin. “Our bodies,” she writes, “Participate in the imago Dei, not in spite of our impairments or contingencies, but through them” (Eiesland 1994, 100-1).

Gorman reveals that like Paul, those who suffer with disabilities like

Tourette Syndrome may never be healed of their disability and companion struggles. They may always face some social ostracizing, relational difficulties and vocational obstacles as well as physical pain (Gorman 2001, 292-295).

However, through formational counseling and Christian meditative prayer, they can come to terms with the tics that ravage their body, they can experience emotional healing and spiritual wholeness, they can boast and delight with the

Apostle Paul in their difficulties, “For when I am weak, then I am strong” (2 Cor.

12:10b).

Historical Foundation

The scope of this project included the aspiration that meditative prayer in the Christian tradition provides help and relief for people living with Tourette

Syndrome. Particularly, emotional and relational stress are reduced leading to an overall improved quality of life. Historically, meditative practices have been used to experience peace through more intimate union with Christ.

This section investigated the mystical practices of the early Greek church fathers, especially Marcarius of Egypt, Ephrem Syrus and Gregory of Nyssa and the other Cappadocians. There will be an emphasis placed on their understanding and use of the Jesus Prayer and the concept of experiencing

Divine love.

The origins of the Jesus Prayer are rooted in Scripture and early traditions. Jesus taught his disciples to pray in his name (John 16:24). The witness of the Apostles was that they operated in the power of the name of Jesus

(Acts 3:6). The non-canonical Shepherd of Hermes claims, “The Name of the

Son of God is great and boundless, and upholds the entire universe” (Similitudes,

9:14).

The reverence for the name of Jesus coupled with Paul’s admonition to

“pray without ceasing,” (I Thess. 5:17 NIV) provided the framework for the genesis of the Jesus Prayer. Christians were interested in obeying Paul’s directive. Short expressions of intercession became one way to fulfill the command. While some argued that all of life was a prayer, the idea of constant supplication through short, repeated phrases containing the name of Jesus persisted (Dawood, 2004, Essay).

Ultimately, the content of the Jesus Prayer emerged directly from the

Gospel of Luke. It is prefigured in the humble repentance of the tax collector.

Luke records, “He would not even look up to heaven, but beat his breast and said, ‘God, have mercy on me, a sinner” (Luke 18:13b NIV). This motif continues in the story of the blind man crying out as Jesus passed by on the way to Jericho.

There was a great entourage surrounding Jesus and the noise of the crowd reached the blind man’s ears. After inquiring as to the source of the cacophony he began to cry out, “Jesus, son of David, have mercy on me” (Luke 18:38 NIV).

In spite of efforts to silence him, the blind man repeatedly called out his desperate prayer until Jesus responded. Generations of Christians have been

whispering some formulation of these words as their own humble plea for healing, transformation, victory in spiritual warfare or union with Christ.

Saint Ephrem offers a dissertation on the healing of blind Bartimaeus. He uses Mark’s account of the story where the beggars name is given. He contends that Bartimaeus’ use of “Son of David” in his invocation, rather than “Jesus the

Nazarene,” reveals both his love and faith. He does not see with physical eyes, but with his inner eyes. This spiritual seeing is because of his faith which,

Ephrem says, is the reason he is healed (Shemunkasho 2014, 281-282).

Ephrem makes it clear that he does not see the Jesus Prayer or any prayer as a formula for gaining answers. It is not an incantation or magical manipulation. Prayer places the seeker’s focus upon God and realigns his attitude. Healing comes from God’s compassion rather than man’s prayer.

However, prayer does have spiritual power. It brings reconciliation and restoration. It has the power to bind and loose and open the doors of heaven.

Prayer rightly offered is a “treasure of medicine” (Shemunkasho 2014, 444-446).

Contemporary Foundation

James Patterson, in his book Against Medical Advice, writes the life story of a friend’s son who suffers from Tourette Syndrome. He titles one chapter,

Brainstorm (Patterson and Friedman 2008, 17). This descriptive word has been echoed by many who experience the trauma of living with Tourette Syndrome,

ADD, ADHD, OCD, Autism, Asperger’s and other disorders on the neurological spectrum and those who treat them.

This paper examined literature that suggests the potential use of Christian meditative prayer to calm the brainstorm for people who have Tourette Syndrome or similar neurological disorders. While some of the writing did not make the direct connection between meditation and Tourette Syndrome, conclusions were drawn from the principles revealed. It was not an attempt to evaluate biological changes in the brain. Instead, it focused on examples of the benefits of meditative prayer which could translate into practice for neurological disorder sufferers.

Clinical studies of Tourette Syndrome patients using meditation practices were juxtaposed with writings on Christian meditative prayer. Writings were particularly noted when using meditative practices as a form of preparation for situations which may contribute to brainstorm and intervention during a stressful situation or episode. Much has been written concerning the centering power of meditative prayer. The purpose of using Richard Foster’s definition of meditation was the impact of his groundbreaking book Celebration of Discipline. Foster’s seminal writing launched a fresh perspective on spiritual formation within the

Evangelical community which continues to this day. He remains an influential writer and speaker on the topic. Foster taught that meditation is best understood as the capacity to move into a calm, assured state of mind that is anchored in the person of Jesus Christ. It is a reference point which holds and guides one through the mundane or chaotic (Foster 1978, 17).

Campolo and Darling in The God of Intimacy and Action, detail the use of meditative prayer by those who endured the crucible of civil rights

demonstrations in the American south during the 1960s. (Campolo and Darling

2007, 160). Martin Luther King, Jr. led many of these events. He required participants to sit in quiet prayer and reflection before engaging the anger, racism and resistance of law enforcement and counter demonstrators. Many meditated for hours, preparing to love and forgive their enemies. By emptying themselves of hostility before the ordeals they would face, they were empowered to be bold and certain (Campolo and Darling 2007, 161).

According to the scholarly article, Habit Reversal Training for Tourette

Syndrome, recent research maintains that, while the tics manifested by those with this diagnosis are “biologic in origin, tics are capable of being worsened, improved, or maintained by environmental events” (Himle, et al 2006, 719-

725). Neurologists widely affirm that the severity of tics can be profoundly impacted by environmental factors. Some of the key antecedent variables are the emotional and cognitive state of the individual (Himle, et al 2006, 719-725).

Whether the storm is internal or external, meditative prayer can offer a preemptive aid for the subject. Himle’s article suggests that heightened self- awareness of one’s emotional, mental and body state, can be achieved through relaxation techniques. A person then becomes aware of encroaching episodes of tics (brainstorms) and is able to use centering practices to combat the onslaught.

Before entering any environment which could potentially trigger or exacerbate tics, the article’s authors suggest tic sufferers use relaxation exercises (Himle, et al 2006, 719-725).

Olivier Clement has compiled and commented on texts from the patristic era of Christianity in his book, The Roots of Christian Mysticism. He quotes contemplative practitioner, Gregory the Great. “Amid the tumult of outward cares, inwardly a great peace and calm is reigning, in love” (Clement 1993, 270).

Campolo and Darling note that meditative prayer creates the kind of heightened awareness the Tourette Syndrome study alludes to. It enables us to see ourselves and our world more clearly. Mundane and repetitive activities as well as special challenges are met with a new vigor and capacity (Campolo and

Darling 2007, 6).

Bishop Desmond Tutu also dealt with violence and racism in his battle against South African apartheid. In The Soul of a Leader, his friend, Margaret

Benefiel details his practice of prayer in wrestling with both the outward pressures and inward turmoil he experienced in this struggle. He acknowledged that without frequent times of reflection and centering prayer he could not have endured. Tutu emphatically states, “I wouldn’t have survived without fairly substantial chunks of quiet and meditation” (Benefiel 2004, 121).

Civil Rights activists, religious leaders, Christian authors, and Tourette

Syndrome researchers have all noted the connection between meditation and increased capacity to deal with difficulties and improve a person’s overall quality of life. Whether one is facing angry crowds, stressful situations, inner turmoil or dealing with a chronic disorder-meditative prayer can enhance the capacity for thriving. It may be employed as a preemptive strategy or for finding peace in the midst of a brainstorm.

Richard Foster teaches that, for the Christian, meditation is filling the mind with the realities of Christ, his Word, and his world. He posits that centering prayer enables one to discover a place of silence where the fragmented thoughts and experiences of the day can be gathered. It opens a space where Christ comes in and gives his peace (Foster 1978, 15), the peace that Tourette

Syndrome sufferers desperately need during an explosion of tics, emotions, and impulsive thoughts.

Richard Rohr in The Naked Now goes a step further. He calls Jesus the

“first western mystic” and suspects that the solitary prayer times may have been non-verbal meditation. He points to these private audiences with God as the gestation of Jesus’ composure and tranquility. Meditation was the key element of his preparation for facing temptation, attack, abandonment, abuse and ultimately, death (Rohr 2009, 71).

Context

Our family participated as active members of the Pennsylvania Tourette

Syndrome Alliance for a decade and have since led seminars and workshops for the organization. We are intimately acquainted with the expressed needs of the families connected to PATSA. A primary concern is finding tools and strategies for addressing the daily struggles of tics, stress, anger and other challenges associated with Tourette Syndrome.

success for their child. Education, strategies for communication, and dealing with emotional fallout of the tics and other associated disorders of Tourette

Syndrome is paramount.

Most families come to PATSA shortly after a child is diagnosed with

Tourette Syndrome. It is during this early phase that support is most critical. As parents and the diagnosed individual grapple with understanding the disability, they need direction, encouragement, and hope.

Recent studies, as detailed later in this document, have demonstrated the efficacy of mindfulness and meditation techniques as a response to Tourette

Syndrome. PATSA and many schools where students associated with PATSA attend promote the use of mindfulness practices for de-escalation or responding to stressful situations. However, tools for training and guiding people through meditation are limited. This resource proposes to be intentional about teaching, modeling, and providing actual meditation and mindfulness exercises.

The goal was to put tools into the hands of the individuals with Tourette

Syndrome and their families. It also fills a void by being uniquely Christian in its approach. All techniques observed in the current setting by the author have been of Buddhist or secular origin. This resource was rooted in biblical, historical, and contemporary Christian practices of meditative prayer and mindfulness.

Project Goals

The purpose of this project was to create a resource for spiritual exercises that will provide support for families participating in the Pennsylvania Tourette

Syndrome Alliance. The goals were as follows-

1. The resource will provide helpful information on some of the interpersonal challenges a person diagnosed with Tourette Syndrome will face.

2. The resource will provide helpful information on some of the interpersonal challenges the family of a person diagnosed with Tourette Syndrome will face.

3. The resource will provide tools to assist the person with Tourette Syndrome to express to their family what they experience.

4. The resource will offer a practical guideline for how to increase positive communication within the family that has a member with Tourette Syndrome.

5. The resource will give practical steps for responding to a tic episode through the use of spiritual exercises for individuals living with Tourette Syndrome.

6. The resource will illustrate how families may provide emotional support for the person living with Tourette Syndrome.

7. The resource will provide a helpful “preparation for the day” spiritual exercise strategy for a person with Tourette Syndrome.

8. The resource will provide a positive “end of the day” spiritual exercise response strategy for a person with Tourette Syndrome.

9. The resource will demonstrate how to pursue a connection with God through prayer for the family where a member is living with Tourette Syndrome.

Design, Procedure, and Assessment

The research question was: In what ways does this resource on spiritual exercises provide support for families participating in the Pennsylvania Tourette

Syndrome Alliance?

The design of the project was the creation of a resource of five animated videos on Tourette Syndrome, a set of questions to guide post-viewing discussion and five meditation podcasts. Instructions, prompts for the Q & A time, transcripts of the videos, and additional information were provided.

The procedure was to procure evaluations from fourteen experts who have experience with the Tourette Syndrome population or possess training, skills and/or roles which equip them to offer a credible response.

The assessment contained questions based upon the project goals.

Questions were formed as positive statements drawn from the stated goals. A 7- point Likert scale was used to measure the degree of effectiveness; ranging from strongly agree to strongly disagree. Three open-ended, qualitative questions were submitted to afford the freedom for participants to share further comments.

Personal Goals

During the project, I engaged in spiritual exercises to deepen my intimacy with Christ and engage the practices my resource purports to teach. My personal goals were as follows:

1. I will deepen my intimacy with Christ by participating in seasons of silence

during the time I am writing my dissertation.

2. I will pray the Jesus Prayer during my daily walks.

3. I will use the Prayer of Examen meditation as a regular part of my worship.

Definition of Terms

Tourette Syndrome is an inherited, neurological disorder characterized by tics - involuntary, sudden movements, or vocalizations or thoughts that occur

repeatedly. Tics are the outward symptom of Tourette Syndrome that leads a doctor to diagnosis. However, Tourette Syndrome does not stop with just tics.

Tourette Syndrome is thought to be caused by a chemical imbalance in the brain especially pertaining to the neurotransmitters Dopamine and Serotonin. There are many associated disorders that may be diagnosed in individuals with

Tourette Syndrome. Tics are involuntary, sudden movements, or vocalizations or thoughts that occur repeatedly. They can range from simple to complex. Simple tics involve only one muscle group or sound while complex tics involve several muscle groups and multiple sounds (Pennsylvania Tourette Syndrome Alliance).

Mental tics are thoughts that intrude into a person’s mind. These thoughts can be pleasant or scary. Mental tics cause an individual to be distracted, appear to be daydreaming or cause anxiety. The thoughts are usually unwelcome, and the individual has trouble putting them aside to concentrate on other matters.

Mental tics can cause an individual’s emotions to change quickly. It is important to understand that like motor and vocal tics, mental tics are involuntary and often quite random (Pennsylvania Tourette Syndrome Alliance).

Meditation in the Christian context has been defined by Richard Foster as best understood as the capacity to move into a calm, assured state of mind that is anchored in the person of Jesus Christ. It is a reference point which holds and guides one through the mundane or chaotic. While Eastern modalities emphasize emptying the mind and moving toward detachment, Christian mediation requires an intentional and focused attachment to Jesus Christ and his Word (Foster

1988, 21).

Mindfulness/Christfulness - Mindfulness is described by psychologist,

Jon Kabat-Zinn, as "the awareness that emerges through paying attention on purpose, in the present moment, and non-judgmentally to the unfolding of experience moment by moment” (Kabat-Zinn 2017). The early Eastern Church fathers provide a Christian expression of this practice by teaching that disciples should be wakeful and attentive. The idea was to become “spiritually intelligent” by setting all things in the presence of God. True mindfulness, in the Christian context, cannot be realized apart from God. Our chosen vernacular will use

Christfulness interchangeably with Mindfulness.

The Jesus Prayer - The Jesus Prayer is based on the biblical account of the blind man who cries out as Jesus passes by on the Jericho road. Luke 18:38

(NIV) records his prayer as, “Jesus, Son of David, have mercy on me.” Various expressions of the prayer have been used by Christians through the centuries. In order to provide the greatest comfort level for the widest number of participants, the formulation used for this project will be, “Jesus, Son of God, have mercy on me” (Stinissen 1999, 7-8). The prayer can be mental or verbal and has often been used repeatedly by contemplatives as a way to fulfill the Pauline admonition to “pray without ceasing” (I Thessalonians 5:17 NIV).

The Three R’s Meditation is a centering prayer designed to help the intercessor become aware of the presence of God and experience his love. It begins with a directive to sit in a calm, comfortable and relaxed posture. As one becomes aware of their breathing and their body, they are instructed to rest. In this serene state, they then welcome the presence of God. They are invited to

receive his love. Finally, one responds to the presence and love of God with expressions of gratitude and affection (Wardle, The Three R’s Lecture, 2014).

Plan of the Paper

This project details the rationale for creating a meditation resource for people living with Tourette Syndrome. The animated videos and discussion material expose the internal and external struggle of those impacted by this diagnosis. The comprehensive impact of Tourette Syndrome on the individual, their family, and their environment, has profound implications for their lives. This project is dedicated to providing a helpful, accessible, and efficacious tool for this community.

The following chapters will include biblical, historical, and theological foundations (Chapter Two); a review of the contemporary literature (Chapter

Three); a detailed description of the method, procedures, and design of the project (Chapter Four); and, results (Chapter Five). The final chapter will reflect on the findings as it applies to ministry.

CHAPTER TWO

BIBLICAL, THEOLOGICAL, AND HISTORICAL FOUNDATIONS

“If you make that sound again, I will shove that ice cream cone down your throat,” the angry man shouted at my son, Jesse. Jesse was standing outside the church camp snack shop enjoying his favorite flavor on a hot July afternoon.

Every time he licked the ice cream, he immediately reacted with a loud gagging reflex, “Blach.”

“I can’t help it sir,” Jesse explained, “I have Tourette Syndrome.”

“No, you don’t,” his red-faced accuser snarled, “You’re just an obnoxious teenager.” Jesse’s friends responded with a chorus of attempted explanations that fell on deaf ears. Jesse walked quietly away encouraging the other teens to follow him. He was used to the confusion, anger, and rejection his tics elicited from others. However, he confided in me later that this incident hurt. He expected such reactions in the public square but assumed church camp would be a safe space.

Living with Tourette Syndrome and other forms of disability or weakness can create personal and social challenges. Interpersonal conflict like the story above is a common occurrence in the life of our family and those we interact with in the disabled community. The Bible has spoken to these difficulties with hopeful and instructive language. Christian theology has grappled with how to embrace disability and Christian history offers teaching on the power of prayer to encounter Jesus in our weakness.

In the Biblical section, we will explore aspects of Paul’s journey with weakness and his experiential understanding of the love of Jesus Christ. The theological segment will look at how a theology of weakness invites us to rethink the community of faith and encounter God’s love for, with and through people with disability. The historical piece will examine how fourth century Christian leaders used meditative prayer in a way which we believe offers hope to people living with painful and chronic physical, mental, or emotional conditions.

Biblical Foundation

Living with a disability does not mean living a disabled life! In fact, the

Apostle Paul suggests it may even be the doorway to a more powerful and useful life! He rejoices in and even celebrates his weakness believing that this is the very place where Christ’s power is most evident (2 Cor. 12:10).

Charles Spurgeon said in a sermon:

God does not need your strength: he has more than enough power of his own. He asks your weakness: he has none of that himself, and he is longing, therefore, to take your weakness, and use it as the instrument in his own mighty hand. Will you not yield your weakness to him, and receive his strength? (Nelson 2017)

A biblical rationale for two key aspects of the spiritual exercises of

Christfulness (mindfulness with Christ as the centering point) and meditative prayer: embracing infirmity and experiencing God’s love will be examined in the writings of the Apostle Paul. Two Pauline texts will be unpacked. The first is his great confession:

Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong (2 Cor. 12:10 NIV).

The second will be:

And I pray that you, being rooted and established in love, may have power together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever! Amen (Ephesians 3:17b-21 NIV).

Power in Weakness

The Apostle Paul explains that a messenger from Satan was sent to keep him from becoming arrogant (2 Cor. 12:7). Although he has repeatedly prayed for deliverance, God’s answer has been to sustain him in his weakness. Paul boasts and even takes joy in the way Christ’s power is revealed through struggle (2 Cor.

12: 7-10).

This concept is the climax of what Paul Barnett and numerous other scholars call, the “Fool’s Speech,” recorded in 2 Corinthians 11:1-12:13 (Barnett

1997, 529). There is a brief epilogue in verses 11-13 before the Apostle Paul moves on to a new topic. The “Fool’s Speech” is part of a larger section in which

Paul defends his apostolic authority. This defense is a theme he emphasizes at several points throughout the epistle.

Paul presents the “Fool’s Speech” to juxtapose himself, his authority, and his ministry against men he deems “false apostles” (2 Cor. 11:13). He creates a

“subtle triangular interplay between them, the Corinthians and himself” using the language of “fools” (Barnett 1997, 528). He imitates the boasting of the foolish

false apostles as a parody and asks the Corinthians to accept him as a “fool”

(Barnett 1997, 528-9).

It is at this point that Paul parts company with the false apostles. They brag about their ability, training, and pedigree. He will not boast about his strengths and capacities (although he assures his readers that he could and in fact does offer some boasts) instead he will focus on his infirmity, his impotence, his weakness.

Four times in this passage Paul highlights his weakness. He has chosen language which articulates feebleness and inability. The Greek words transliterated as astheneia and astheneó in the text are part of a cluster of four words used in the New Testament. Together the terms appear a total eight-six times. Paul uses the verbiage more than any other writer by a substantial margin, including fourteen times in Second Corinthians (Strong’s Exhaustive

Concordance, 2004).

The categories of meaning for the word cluster include lack of strength in the body, mind, and soul. Weakness may be exhibited as the native frailty of the body, sickness, or a chronic condition. The words are used to express a lack of capacity to understand, to do great or glorious things, to restrain corrupt desires or to endure trials and difficulties. Occasionally, economic need or poverty are intended. Paul most often speaks of weakness of the flesh as impotence to achieve salvation or overcome struggles (Strong’s Exhaustive Concordance,

2004). This becomes particularly important to the conversation when trying to

determine the meaning of Paul’s thorn in the flesh, a topic which will be discussed later in this document.

Unlike his opponents, Paul will boast and even delight in his weakness.

He does this because Christ’s power is present and manifested through it. Three times in the text he declares that power and strength are exhibited through his weakness. He selects this oxymoronic language to emphasize his point. By boasting in his weakness, Paul is elevating and celebrating the power of Christ.

Paul turns the tables on his critics by exalting in his weakness. Their attack merely justifies his claim to be more of a servant of Christ than they are

(Collins 2013, 220). They have spoken of their achievements; Paul identifies his difficulties. “Although the rhetorical terms in which Paul expresses himself are strange to us today, they would have provoked considerable comment in his day”

(Barnett 1997, 529). At a time when people highlighted their accomplishments,

Paul’s words are a “daring countercultural exercise” (Barnett 1997, 529).

narrative in third person because of his reluctance to speak of special gifts and graces in his own life. “Moreover, in an ecstatic experience a kind of retreat of the ego, with the consequent possibility of objectification, is supposed to occur”

(Lambrecht 1999, 200).

Paul reluctantly but necessarily recounts his incredible vision: He, “Was caught up to paradise and heard inexpressible things, things that no one is permitted to tell” (2 Cor. 12:4). However, he declares, “I will boast about a man like that, but I will not boast about myself, except about my weaknesses” (2 Cor.

12:5). In recounting this event, he is not attempting to highlight his good fortune or high standing, but rather, to use it as a final expose’ of weakness.

Due to this experience, Paul was vulnerable to pride. He could have felt he now had some special position. But God acted to protect him from himself.

Barrett paraphrases Paul’s description, “Because the revelations were so marvelous, God took steps to see that I should not be unduly exalted” (Barrett

1973, 313). This is, “God’s care for him,” (Lambrecht 1999, 203) because he needs it due to his weakness! Paul admits, “Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me” (2 Cor. 12: 7b).

Three questions must be answered. What is the nature of this messenger, this “thorn in the flesh?” How did Paul respond to it? What was Christ’s final verdict? These answers will enable us to apply Paul’s experience to the individual living with a chronic condition such as Tourette Syndrome.

The word used here for thorn is transliterated skólops. It appears only one time in the New Testament and means, “anything with a sharp point, a thorn, an instrument producing pain, discomfort or acute irritation” (Strong’s Exhaustive

Concordance, 2004).

Against the possibility of him being puffed up with religious pride, “God has pinned Paul to the earth with an unidentified stake/thorn” (Barnett 1997,

567). The exact meaning and nature of this thorn has been debated throughout

Christian and interpretive history. “There is no unanimity about even the kind of suffering or disability Paul was alluding to” (Barrett 1973, 314).

There are three major threads of interpretation dating back to antiquity.

One is based in the Latin Vulgate’s translation of the phrase as “stimulus cari

(‘sting of the flesh’), which, according to Matera, suggests temptation of a sexual nature” (Matera 2003, 283). This idea held nearly universal sway in the Western

Church until Luther and Calvin challenged it during the Reformation (Matera

2003, 283). Modern scholarship has followed the Reformers in dismissing this tract.

The earliest interpretive tradition comes from Tertullian. He postulated that Paul experienced headaches. The text lends itself to this idea because the messenger from Satan “beat” or “struck” him. The idea that the thorn refers to a physical ailment has led to other suggestions...one of the most popular conjectures being an eye ailment, given Paul’s remarks in Gal. 4:13-16 about the infirmity that brought him to Galatia and the willingness of the Galatians to give him their eyes if they could. (Matera 2003, 283)

Chrysostom was aware of Tertullian’s opinion but did not accept the idea that Paul’s body could have been handed over to Satan. He proposed Paul’s thorn had to do with his adversaries. He notes that several are named in 2

Timothy, including Alexander the coppersmith, Hymenaeus and Philetus.

Although contemporary scholars are less inclined to identify Paul’s adversaries so specifically, many follow Chrysostom’s lead by viewing Paul’s opponents, either in general or those mentioned in (2 Corinthians) chapters 10-13, as his

‘thorn for the flesh’” (Matera 2003, 283).

Barnett agrees and expounds that, “Broadly speaking, Paul’s reference has been thought to be either physical ([a] an illness, disfigurement, or disability, or [b] moral temptation) or relational (opposition to ministry of persecution)”

(Barnett 1997, 569). He argues that there are strengths and weaknesses to both positions concluding that, “We do not have enough information to do more than speculate on the nature of Paul’s skolops” (Barnett 1997, 570). Lambrecht states simply; “There is no consensus concerning the kind of suffering Paul is alluding to by “thorn” and/or “a messenger of Satan” (Lambrecht 1999, 203).

What can be ascertained from the text, according to historical and contemporary scholarship, is that Paul had a chronic, humbling hardship which he had lived with for at least fourteen years. The struggle came from without as a messenger of Satan, although it was given and used by God to keep Paul humble. As in Job (2:1-10), it could be understood that Satan is God’s agent.

Certainly, the ongoing and severe nature of the struggle suggests it may be coming from the Adversary. “Be that as it may, behind any and every machination of Satan, Paul could discern the overarching providence of a God who perpetually created good out of evil” (Harris 1976, 396). The affliction was apparently beyond his control to end or ameliorate.

Paul’s experience provides a biblical rationale for embracing a chronic condition like Tourette Syndrome. He offers a case study for a Christ follower who is hampered, even disabled by an inveterate plight. Barnett suggests our lack of certainty as to the true nature of Paul’s condition is providential. “The very openness of the identification allows wide possibilities of personal application to a broad range of personal suffering, which precise identification might limit”

(Barnett 1997, 570).

Suffering people can find an empathetic companion in the Apostle Paul.

They discover a writer who lives with constant difficulty. However, he is a hopeful example of how to embrace one’s plight. Paul declares repeatedly that when he is weak, he is strong. He will boast in this weakness because that is when the power of Christ dwells in him.

How did Paul respond to his weakness, his thorn in the flesh? He prayed!

“Three times I pleaded with the Lord to take it away from me” (2 Cor. 12:8). We discover that God does not remove Paul’s chronic condition. The idea that his prayer appears unanswered, at least in the way he requested, is another sign of weakness. He boasts not in some miraculous healing, but in the harsh reality that he has been required to continue suffering.

Consider the elements of Paul’s intercession. “His ‘three times’ stands in parallel with Jesus’ threefold prayer to the Father in the Garden of Gethsemane”

(Barnett 1997, 571). Lambrecht doubts that this is an illusion to this event

(Lambrecht 1997, 571). However, Matera agrees with Barnett saying, “Just as

Jesus prayed to his Father to let the cup of suffering pass from him, so Paul prayed to the Lord (Christ) that the thorn, the angel of Satan might leave him”

(Matera 2003, 284). Barrett suggests it is a sign of earnestness (Barrett 1973,

317).

What is clear is that Paul persisted in prayer for some time in seeking relief from his difficulty. “Possibly ‘three times’ was a conventional symbol of repeated prayer. Threefold actions appear to have been customary in matters relating to piety” (Barnett 1997, 571). “Paul’s calling on the Lord several times is in keeping with early Christian tradition that a once-only appeal is not enough

(Collins 2013, 240).

Not only did Paul pray doggedly, he prayed earnestly. “Three times I pleaded (emphasis mine) with the Lord to take it away from me” (2 Cor. 12:8). A strong emphasis is placed upon the request, potentially, “I begged” (Barrett 1973,

316). In any case, the asking, coupled with the repetition, exposes the deep longing Paul had for relief. There is a yearning, even desperation in the tenor of the language. He wants his tormentor removed.

Paul’s request for the thorn’s removal was not granted. However, this did not mean his prayer was unanswered. “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness” (2 Cor. 12:9a). The Lord has spoken, and his reply is final (Lambrecht 1999, 203). There will be no deliverance, instead, there will be a gift of empowerment.

“The first part of Christ’s answer is a refusal; then, in the second part, which brings the motivation, it becomes evident that this refusal contains much more than a possible granting of Paul’s request could have brought” (Lambrecht

1999, 203). The grace Christ speaks of seems more than saving grace, but a power that is perfected in the weakness of Paul. “The verb teleō means not only

‘to complete, to finish’ but also ‘to bring to fullness, to make perfect” (Lambrecht

1999, 203).

Christ’s answer to Paul is an episodic encounter. Unlike the esoteric and nebulous revelation fourteen years earlier, “The Lord’s oracle to him is clear and communicable” (Barnett 1997, 573). The verb tense bears witness that the

“Lord’s reply stands: his grace is sufficient, and his power is made perfect in the unremoved “weakness” of the stake/thorn” (Barnett 1997, 573). Where Paul has suffered the wound of hardship and pain, Jesus has met him with a word of hope and life. He points to the sufficient grace of Christ, perfected in his weakness.

The risen Lord made Paul understand why he suffered so much hardship. Paul understands the hardships are not wonderful in themselves; Paul is not a masochist. He can delight in his hardships: for when I am weak, then I am powerful. (Collins 2013, 242)

Paul moved from desperate pleading for deliverance from his weakness to faith-filled boasting in it. This transformation occurred because he heard from the

Lord. It is the kind of encounter Christian meditation seeks to facilitate.

The Experiential Love of Christ

Ephesians 3:17b-21 records another prayer of the Apostle Paul. This time he is not seeking personal healing, but rather, is interceding on behalf of other believers. Paul emphasizes that the experience of the vast love of Christ is not

reserved for some category of special saints, but that every person can apprehend this love as their own. It is an experiential knowing that would be impossible apart from the Spirit. It is through His illumination that this transcendent mystery is discerned (Simpson 1957, 80).

Paul prays that they will “grasp” the expansiveness of God’s love and

“know” this love that surpasses knowledge! The transliteration of know, ginṓskō – means, “properly, to know, especially through personal experience (first-hand acquaintance). It is used, for example in Luke 1:34, “And Mary [a virgin] said to the angel, 'How will this be since I do not know (ginṓskō = sexual intimacy) a man?'" (Strong’s Exhaustive Concordance, 2004).

Ascertaining this love is available to all as they are enabled. The single

Greek verb translated here as, “may have power,” is an intensive empowerment or enlightenment. Coupled with “to grasp” which means to perceive or comprehend, it becomes a powerful declaration of the very real possibility of being fully engulfed in the vastness of the love of Christ (Wood 52, 1978).

This power is not stagnant. It is one that can and must grow. Previously

Paul prayed that Christ might dwell in the hearts of the Ephesians through faith

(Eph. 3:16). It is through the indwelling Christ that there is a growing capacity to grasp the love of which Paul writes. This is the “how to” portion of Paul’s intercession. Christ’s presence enables them to prevail in the pursuit. It is the

Spirit which enables them to become, by faith, strong enough to grasp the revelation of love (Thielman 2010, 234).

The emphasis of the epistle is upon unity, rooted in love. Believers are unified with Christ and called to unity with one another.

The emphasis in Ephesians 1-3 on the broad sweep of God’s saving purposes, together with his intention to bring all things together into unity in Christ, provides the long paraenesis of chapters 4-6, which is fundamentally an exhortation to unity. (O’Brien 1999, 63-4)

Paul’s prayer for the Ephesian believers is the fulcrum between these two sections. He has detailed magnificent spiritual blessings that are theirs in Christ.

They have been chosen through the grace and purposes of God and sealed by the Holy Spirit. They have been the happy recipients of lavish gifts of mercy and love. Thus, Paul’s opening praise, “being rooted and established in love (Eph.

3:17b). Meaning, they have been firmly planted in the love of God manifested in the redemptive work of Christ Jesus.

One of the purposes of Christ’s indwelling love is to rivet believers on a solid infrastructure of love. Because they are loved, they are empowered to begin exploring the depths of that love. Only from this position of acceptance, security and assurance can they know the love of God in the intimate, “felt” way which

Paul is praying for. “Through the strengthening of the inner person by God’s

Spirit and Christ’s indwelling in their hearts, the readers are to be established in love so that they will comprehend the greatness of the love of Christ” (O’Brien

1999, 260). The firm foundation of love provides the platform for an authentic, experiential encounter with love.

Talbert agrees this is the aim of Paul’s prayer:

What would be the result of the auditor’s comprehending the vastness of the love of Christ? They would know the love of Christ, which surpasses

knowledge. This knowledge serves a purpose: in order that you may be filled up to the level of the fullness of God. (Talbert 2007, 102)

Next Paul describes the vastness of the love he longs for the Ephesians to apprehend or be apprehended by. He writes spatially about the height, depth, and breadth of the love of God. This manner of description has puzzled interpreters.

Historically, there have been numerous suggestions. Some early writers, including Augustine and Iranaeus, posited the language calls to mind the cross.

Chris’st limbs were stretched out in crucifixion. Both literally and symbolically there were horizontal and vertical dimensions to his death and what it accomplished (Lincoln 1990, 208).

Other commentators have suggested the imagery mirrors the description of the Holy City, the New Jerusalem in its cubic dimensions. Still others have identified “wisdom” as the object of Paul’s characterization (Lincoln 1990, 208-

11). Thielman notes the view that the wise and mysterious administration of God is being depicted in the four spatial terms is held by a number of ancient interpreters, including Ephraem of Syria (Thielman 2010, 334).

Thielman suggests that part of the difficulty is in the intent of Paul. “The sense of anticipation about the identity of this ‘something’ builds as Paul lists four terms of measurement for its size (Thielman 2010, 334). Christ’s love is a mystery of such massive magnitude that it cannot be understood apart from an epiphany. “This is the revelation for which Paul prays” (Thielman 2010, 337).

Thielman determines that the best rendering is another ancient view. This view takes into account the complex wisdom of God, but sees the spatial

measurements as primarily a descriptor of the vastness of divine love. He reveals that Chrysostom had this perspective. Chrysostom thought it was a revelation of

God’s love on behalf of believers, especially as it was made visible everywhere in the world (Thielman 2010, 337).

Lincoln’s conclusion is that the concept needs to be understood within the framework of the Christian community. “The comprehension the writer desires for his readers is not some esoteric knowledge on the part of individual initiates, not some isolated contemplation, but the shared insight gained from belonging to the community of believers” (Lincoln 1990, 213). O’Brien agrees, saying, “That grasping Christ’s all-encompassing love is something shared with other believers, hence the phrase with all the saints” (O’Brien 1999, 263).

Paul ends by expressing a knowing that surpasses knowledge. He is aware that this kind of knowing can only be ascertained through the power of the

Holy Spirit. In fact, “It is as though, at the experiential level, Paul does not distinguish between the activity of Christ and the Spirit” (Talbert 2007, 102).

Paul again chooses oxymoronic language to accentuate his teaching. He wants the Ephesian believers to know what is unknowable. “Christ’s love can never be fully grasped either intellectually or existentially” (Best 1998, 347).

However, believers can “Grasp the extent of Christ’s love when they have been strengthened through the Spirit in their inner being, Christ has come to dwell in their hearts and they are underpinned by love” (Best 1998, 347).

Of course, it is understood that the comprehension is by no means a complete and total understanding of God’s love. The perception is one of

experience. It is impossible to measure the immeasurable. This experience is one that passes human knowledge (Gaebelein 1913, 52).

There is no sense in which Paul is disparaging knowledge. He is simply confessing that the love of God is beyond our normal capacity for comprehension. It is so great that it can never be fully apprehended. “No matter how much we know of the love of Christ, how fully we enter into his love for us, there is always more to know and experience” (O’Brien 1999, 264).

Finally, Paul reaches a celebratory climax in his prayer by exalting, “Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen” (Eph. 3:20-

21). Paul longs for his readers to have this experiential knowledge of love because it is transformational!

“The God being praised is the God of immense power who is at work in believers, to whom believers pray, and from whom believers receive answers beyond their greatest expectations” (Talbert 2007, 103). God’s purpose, as expressed by Paul is an infilling, empowering presence that brings believers to a spiritual maturity. They are strengthened and changed in ways which produce

Christ-like character (O’Brien 1999, 265).

The train of thought in Paul’s prayer can be integrated into Christian meditative practices for people living with Tourette Syndrome. His affirmation is that an episodic encounter with the love of Christ is an empowering experience.

Coupled with his view of strength in weakness, this love becomes the source for victorious living.

Theologically, the Church has followed Jesus in embracing the weak, the sick, and the outcast. The following section will look at aspects of the developing theology of disability. Particularly in relation to discovering the manifestation of the love of Christ in weakness.

Theological Foundation

The theological foundation of this project expands on the biblical foundation themes, that is, Power in Weakness and the Experiential Love of

Christ as experienced in and through disability. The first theme will be elucidated by the reflecting on the ideas of Bonhoeffer, Pinnock, Brow and Caspary who represent a consensus that the disabled are inherently necessary in the Body of

Christ. “We need both weak and strong members in the body of our crucified and risen Lord” (Pinnock and Brow 1994, 157-158). They teach how to recognize this without relegating disabled persons to simply receivers of ministry (Caspary

2012, 36).

Nancy Eisland introduces the concept that God in Christ is himself disabled. She has envisioned an understanding of Jesus rooted in his resurrected but still scarred body. He is symbolically and bodily present with the marginalized (Eiesland 1994, 100-1). Amos Yong will argue that Paul must be understood as a disabled theologian (Yong 2011, 89).

Michael J. Gorman combines the theories of the disabled God and Paul the disabled theologian to postulate that weakness uniquely manifests the power

of Christ (Gorman 2001, 293). Harrison emphasizes the unique dignity of all people, including the marginalized and the need for their inclusion in the

Christian community. She contends they are God’s image bearers and demonstrate his presence among us (Harrison 2010, 106). Romero insists on the value of disabled people (Romero 2012, 112).

The second theme, the Experiential Love of Christ, will be examined beginning with Howard Thurman and Bonhoeffer who both affirm God’s love, in spite of great suffering. Their writing is neither glib nor self-pitying but relates their lived reality. “There is so much anguish in this life, so much injustice, so much suffering…sometimes it feels like a fantasy to say that God is love”

(Thurman 1998, 28). Gorman introduces suffering as a manifestation of love

(Gorman 2001, 199). Fee affirms experiential love as an in breaking of the new age (Fee 1996, 145).

Pinnock, Brow, and Harrison emphasize the communal aspect of love and

Erickson roots it in the Trinity. Erickson says the Trinitarian nature of God is at the heart of experiential love. It is a relationship of encounter which results in deep joy and continuous care (Erickson 2013, 263). Jean Vanier postulates that love is learned with and from the disabled (Reinders 2012, 467). Yong teaches that the nature of the love of Christ is seen in the faces and lives of the disabled

(Yong 2011, 104).

Amy Laura Hall draws on the rich writings of Julian of Norwich to develop her theology of experiential love. She suggests Julian’s work sounds much like the contemporary writers on disability as she speaks out of her journey of deep

pain. Her posture of praise is instructive on the experience of encountering

Christ’s love in the midst of great suffering (Hall 2012, 163).

Writing against the horrific backdrop of Nazi destruction of disabled people and others, Dietrich Bonhoeffer offered this unambiguous declaration in his

Ethics:

Life created and preserved by God possesses an inherent right, completely independent of its social utility…There is no worthless life before God, because God holds all life itself to be valuable. Because God is the Creator, Preserver, and Redeemer of life, even the poorest life before God becomes a valuable life. (Wannenwetsch 2012, 353)

Nancy Mairs echoes this sentiment:

The bodies we inhabit and the lives those bodies carry on need not be perfect to have value. Bad things do happen, we know - to bad and good people alike - but so do good things. Life’s curses, like life’s blessings, are always mixed. (Mairs 1990, 130)

People often have difficulty loving themselves, trouble seeing their own value. This may be exacerbated for a person living with some form of chronic disability. Many of them carry a stigma that diminishes their own sense of self and worth. Yet, Christian theology rooted in the teaching of the Apostle Paul, places these individuals at the very center of the visible Body of Christ. The theological foundation will consider these themes: discovering the power of God in weakness and experiencing the transformational love in Christ with and through the disabled.

Power in Weakness

Here is a motto for the disabled: “We are weak in him, yet by God’s power we will live” (2 Cor. 13: 4). Pinnock and Brow make this case in their discussion

on the healing love of God. They postulate what they call, “The gift of the handicapped life.” Rather than despising disability, God manifests his power through it. No community of believers is complete without the infirm or weak.

Each of these members, who possess their own gifts, are indispensable. “The strength of God works in every disablement; any life shines when the love of God falls upon it. We need both weak and strong members in the body of our crucified and risen Lord” (Pinnock and Brow 1994, 157-158).

Theologian and medical ethicist Almut Caspary, brings the views of the patristic era under a clear lens that can help guide us in our modern understanding of the proper response to disability. She demonstrates that two prominent strands are evident in the attitudes of the early Christian thinkers toward disfigured, diseased, and marginalized people. First, Caspary says, was the desire to define the body from an ontological viewpoint. They attempted to describe what is distinctive about humanity. To identify what makes us who we are. In this approach the body was regarded as subordinate to “the soul” or the

“spiritual.” Whatever infirmities existed were ancillary to the life of the spirit

(Caspary 2012, 36).

Secondly, Caspary continues, they were concerned with ethical considerations. Particularly, how do we live well in relation to our fellow humans?

Christian philanthropy is emphasized as fulfillment of Christ’s command to love one another. Caspary notes that disabled people were of value because they provided opportunity for self-giving love (Caspary 2012, 36).

Like Pinnock and Brow, Caspary postulates that disabled believers are inherently necessary in the Body of Christ. She cites Cappadocian Father,

Gregory of Nyssa who writes of the disabled, “The hand is mutilated but it is not insensitive to assistance” (Caspary 2012, 36). However, their worth was also recognized as intrinsic. Caspary notes the disabled are not simply the receivers of ministry but have their own capacity to know God, as the conclusion of

Gregory’s statement reveals, “The foot is gangrenous but also able to run to God; the eye is missing, but it discerns invisible goodness nonetheless, to the enlightenment of the soul” (Caspary 2012, 36).

Caspary seeks to bring these ancient beliefs and practices to bear on our current theological discussion of care for the disabled and, “concern with the outsider which we know today in its secular form as that of disability rights

(Caspary 2012, 36). She reminds us that the Christian attention on and care of those who had historically been shunned was a new and radical innovation of the

Christian Church. Caspary concludes that challenging any view of the church or society that excludes the disabled is vital to the Christian mission (Caspary 2012,

37).

In The Disabled God, theologian, Nancy Eiesland has envisioned an understanding of Jesus rooted in his resurrected but still scarred body. Her view concurs with the perspective of Pinnock, Brow and Caspary by positioning Jesus directly within the disabled community. As the disabled God, he does not strive to dominate and he is not simply the heroic, suffering servant. Instead he is symbolically and bodily present with the marginalized. Eiesland notes this reality

repudiates the ancient and stubborn conception of disability as the result of personal sin. “Our bodies,” she writes, “Participate in the imago Dei, not in spite of our impairments or contingencies, but through them” (Eiesland 1994, 100-1).

Eiesland’s concluding thought parallels the teaching of Thomas Aquinas as articulated by Miguel J. Romero of the Hispanic Theological Initiative. Romero examines Aquinas’ extensive writing on corporeal infirmity including those who are severely mentally handicapped. For the disabled individual, Romero says, what is not hindered, “Is her active imaging of God, nor is she prevented from participating in the supernatural life” (Romero 2012, 112). Romero further maintains that disability cannot keep her from experiencing the grace of God or impair her from achieving her ultimate good (Romero 2012, 112).

Amos Yong, professor of theology and mission and director of the Center for Missiological Research at Fuller Theological Seminary, grew up alongside a brother with Down Syndrome. He argues that we better understand Paul by recognizing he writes from a prospective of weakness. Yong claims it is reasonable to read the Apostle Paul as a disabled servant of the disabled God.

Like Christ, he entered into weakness. While hearing Paul as a disabled theologian may not be the only way to understand his teaching, “He can nevertheless be considered the first to articulate a theology of weakness that has normative implications for a more inclusive theology of disability” (Yong 2011,

89).

Yong echoes Pinnock and Brow in saying weakness, particularly weakness associated with disability, should not relegate a person to the status of

perpetual recipient of ministry. In fact, in discussing the gifts of the Spirit, Yong suggests Paul’s theology of weakness is clear, “The more powerful manifestations are mediated through those whose abilities are less noticeable or who are thought to be lesser candidates for God’s work from a worldly or ‘normal’ point of view” (Yong 2011, 94).

Dietrich Bonnhoeffer concurs with this position. He preaches a sermon from a segment of Paul’s “fool’s speech” entitled, “My Strength is Made Perfect in

Weakness” (Wannenwetsch 2012, 372). Bonehoeffer argues that confronting the problem of weakness and our attitude toward it is an all-important issue. Our aversion to our own weakness and weakness in others tends to hamper our happiness. Yet Christianity has always attracted and been identified with the outcast and the marginalized (Wannenwetsch 2012, 373).

The Christian relation between the strong and the weak is that the strong has to look up to the weak and never to look down. Weakness is holy; therefore we devote ourselves to the weak. Weakness in the eyes of Christ is not the imperfect one against the perfect, rather is strength the imperfect and weakness the perfect. (Wannenwetsch 2012, 374)

Yong says this concept encourages a threefold outline of how to interpret weakness in the Christian church. Paul’s thought reveals that it is first and foremost a collective of the weak not the strong. “People with disabilities are thus at the center rather than at the margins of what it means to be the people of

God” (Yong 2011, 95). Second, every individual with an impairment offers something vital, even necessary to the community of faith. Finally, the work of the

Holy Spirit manifests powerful ministry through the disabled person. The

weakness of disability becomes the paradigm for, “embodying the power of God and manifesting the divine glory” (Yong 2011, 95).

Michael J. Gorman combines Eisland’s disabled God and Yong’s disabled

Paul. The concept of weakness transformed into power is precisely what happened on the cross. Jesus was being displayed in weakness for the good of the entire world. His death is an, “apocalyptic, liberating, life-creating act of God”

(Gorman 2001, 293). Paul is fully convinced that this, “resurrection, life-creating power of Christ is at work in and through him (Gorman 2001, 293).

Gorman insists that weakness is a, “necessary corollary of the gospel of

Christ crucified as the power of God” (Gorman 2001, 293). It is in the ministry of weakness that transformation occurs, deep needs are met, and communities of faith are formed (Gorman 2001, 293). Jesus and Paul both live out this paradox.

Gorman highlights the significance of Paul’s weakness in three ways.

First, it serves as a humbling agent. Second, it is instructive in teaching the sufficiency of God’s grace. But Gorman says the most important aspect is the reality that God’s power is, "activated by and most fully in Paul’s weakness”

(Gorman 2001, 289). It is this transformative power that he desires to see activated in the believing communities formed through his ministry (Gorman

2001, 298).

Gorman points out that power, for Christians, is not something they wield or control. Instead, it is the power of Jesus that controls and influences the believer. Moral transformation is one result of the power of Christ at work in the

believer (Gorman 2001, 298). However, it is power as status transcendence and reversal that is so radical in the Christian construct (Gorman 2001, 299).

Gorman insists Christian communities must shed the social confines of gender, class, and race. In fact, God intentionally chooses those who do not have privileged status as the repositories for his power. Gorman says this power,

“is not to be found in social power but in social weakness, in those who are weak and despised” (Gorman 2001, 293).

Gorman teaches that God’s power does not only act on the believer, but through them (Gorman 2001, 301). Every member of the faith community possesses and may exercise spiritual gifts. While the gifts may have a perceived hierarchy of benefit to the community, contends Gorman, everyone has a gift that is important and valuable, including those of lower worldly status. Often the

“socially inferior are the communally superior (Gorman 2001, 301). This construct has clear ramifications for the disabled within the family of God. They inhabit a unique space of honor in the community. God’s power is manifested in their weakness to humble, teach, and bring transformation. However, the pressure to define people by their disability must be resisted (Gorman 2001, 301).

Yong warns us on behalf of the disabled community to be alert to the temptation to define their personhood in terms that could lead to discriminatory attitudes and practices. We should neither sentimentalize or valorize those who live with disabilities nor burden them with negative stereotypes. However, even as we recognize these potential pitfalls, we should note that Paul’s view point “Is

precisely to subvert such usually unquestioned presuppositions” (Yong 2011,

96).

Caspary concurs, arguing that, “This identification with Christ neither elevates the sick above other humans nor relegates them below” (Caspary 2012,

35). She gleans this idea from Gregory of Nazianzus who identifies the disfigured as images of Christ. In describing philanthropic service to the outcast he exhorts,

“Let us take care of Christ while there is still time; let us minster to Christ’s needs, let us give Christ nourishment, let us clothe Christ, let us gather Christ in, let us show Christ honor” (Caspary 2012, 35). Caspary infers the sick are neither above nor below other humans in this construct. They are fellow Divine-image bearers.

They are the very face of Christ. They are, “brothers and sisters before

God…who share the same nature with us” (Caspary 2012, 35).

Eastern Orthodox theologian Nona Harrison presents an inclusive theology of Christian formation. Harrison suggests, “Royal dignity,” as a fitting descriptor for human commonality. She imagines every little girl as a princess because God is her father. She is of royal birth. Harrison says this royalty involves dignity and splendor. “Because everyone is made in the image of God, and because this image defines what it means to be human, people are fundamentally equal, regardless of our differences” (Harrison 2010, 90-91).

Harrison contends for the dignity of those held in modern slavery and then adds:

Women, the disabled, the homeless, the poor, and all marginalized also need attention and care. We can find a task that corresponds to our gifts and glorifies God while serving our neighbors…it is our responsibility to find ways to affirm the full humanity-the royal dignity-of all people,

especially those we meet each day, and those whom others are inclined to despise. (Harrison 2010, 105-106)

Harrison joins Yong in cautioning the church to be aware of sentimentalizing the disabled and our service with and to them. While they deserve consideration and compassion, they are not simply objects of philanthropy. They are God’s image bearers and demonstrate his presence among us (Harrison 2010, 106)

Bonehoeffer concludes his sermon with a similar admonition “Not the weak has to serve the strong, but the strong has to serve the weak, and this not by benevolence but by care and reverence” Wannenwetsch 2012, 373). It is not the powerful who is right, but the weak. This devaluation of all human values establishes a new Christian order. This is so because God has entered into the world and suffered for humanity and at the hands of it. All “suffering and weakness is sharing in God’s own suffering and weakness in the world. Suffering conforms man to God” (Wannenwetsch 2012, 374).

The Experiential Love of Christ

“My faith teaches me that God is love. Not only that He is; not only He is near; but that He is love” (Thurman 1998, 28). Howard Thurman, the prominent

African-American theologian, gives this affirmation and then acknowledges why it is sometimes difficult to embrace. There is so much anguish in this life, so much injustice, so much suffering and so much “reflective hell” that sometimes it feels like a fantasy to say that God is love (Thurman 1998, 28).

Thurman signifies how he maintains his confidence:

When I love someone, I seem to be at the center of all meanings and values. Life takes on a new significance and I seem to have a quality of experience which is or was the guarantor of all experience. Again, under the compulsion of love, I send my life forth to do and be things that nothing else is capable of inspiring. I do gladly for Love’s sake what no power in heaven or hell could make me do without it. Therefore, whatever else Ultimate Reality God is, He must be love (Thurman 1998, 29).

Thurman’s own experience of giving love and living in love sheds light on the affection God has for him. He further explains that experiencing the love of

God means one is like a tree planted by the stream. There is no fear, even in the scorching heat. Life is fruitful, peaceful and serene. In short, no matter the conditions, life is worth living (Thurman 1998, 29).

Michael J. Gorman says, “Paul was nothing if not someone overwhelmed by the love of God. He experienced this divine love, according to his letters, in

Christ and by the working of the Spirit” (Gorman 2001, 155). He understood this love as grounded and manifested in the crucifixion. Love, in Paul’s definition, is always self-giving (Gorman 2001, 155). Although rooted in the historical event of the cross, Christ’s love is an ongoing reality, “especially in the midst of persecution or other hardships” (Gorman 2001, 155). He is interceding for his followers, seeking their edification and present in their struggle. Those, like Paul, who experience this love, become not just receptacles for it, but conduits. Christ loves others through them (Gorman 2001, 155).

Gorman notes that Paul saw suffering as a manifestation of love. He submits that this is the norm for all Christians. “For those who confess the love of

God in the death of Jesus, two existential corollaries automatically follow:

suffering for others is inevitable and suffering for others must be motivated by love for it to be worthwhile” (Gorman 2001, 199).

Gorman identifies four ways Paul seeks to live this premise out. He endures his own suffering to identify with and reveal the non-retributive love of

God in the death of Jesus. It serves as a badge of accreditation and honor in his role as an apostle. It demonstrates his sacrificial mindset in being willing to lose everything, including his life, for the salvation of others. It means that Paul experiences and models the reality that in spite of, nay, because of suffering, he knows the deep love of God in Christ through the Holy Spirit (Gorman 2001,

200).

Gorman explains that the suffering need not be directly related to persecution or pain due to proclaiming or living out one’s Christian faith. The power of Christ is manifested in all types of suffering, including physical disability.

What is critical is not the reason for or nature of the suffering, but the working of the Holy Spirit in it. The person with a disability may embrace this weakness as an opportunity to boast in the power of Christ. Their capacity to trust, to endure and to praise in midst of perpetual difficulty is a powerful witness to the Gospel

(Gorman 2001, 289).

Renowned Pentecostal theologian Gordon Fee draws on Paul’s teaching to state that the in breaking of the love of God and the power of the Spirit are an experience of the age to come. Fee says this is why he is able to balance the tension between hope and suffering, between promise and difficulty. “Present suffering is a mark of discipleship whose model is our crucified Lord. But the

same power that raised the Crucified one from the dead is also already at work in our mortal bodies” (Fee 1996, 145).

Fee adds that suffering impacted Paul’s intercessory life. He prayed earnestly for the removal of the thorn. However, God’s response was to meet him in the suffering. Paul’s experience reveals that prayer is not presenting a list offer needs and desires and is even more than a cry of desperation. It is activity inspired by God himself, through his Holy Spirit. It is God siding with his people and, by his own empowering presence, the Spirit of God himself, bringing forth intercession that is in keeping with his will and ways (Fee 1996, 149)

Bonehoeffer taught that manifested love of Christ is authentically experienced by the disabled. It is also uniquely learned from them and with them.

Love is not, however, encountered by others through the disabled in a patronizing or sentimental way. Bonhoeffer will have none of this calling it,

“Emotional love” and warning that it dissipates as soon as its object appears to have nothing to give back. Rather, it is revealed as Christ’s presence is manifested through them (Wannenwetsch 2012, 366).

For Pinnock and Brow, love is always communal. It must be shared and experienced with the other. “The gospel declares God to be a fellowship of

Father, Son and Spirit in the unity of one essence, essentially a fellowship of loving mutual relationships” (Pinnock and Brow 1994, 45).

Millard Erickson agrees that the Trinitarian nature of God is at the heart of experiential love. Far from a being merely a legal declaration, God’s love is eternal self-giving affection flowing between the Father, Son and Holy Spirit

which is poured out on humanity in the cross of Christ and mediated through the

Presence of the Holy Spirit. It is a relationship of encounter which results in deep joy and continuous care (Erickson 2013, 263).

Harrison goes further contending that the Trinitarian image of God, the three together, is imprinted on humankind. There is wide theological agreement from many traditions that one way we bear the likeness of this image is by living in community. It is therefore incumbent upon us to bridge the divides keeping us from one another, including disability. As we share life with and learn from those who differ from us we discover our own humanity and grow in God’s virtuous, communal love. “If we are to love our neighbors, we have to recognize that in the first place all of them are human beings, just as we are” (Harrison 2010, 134).

Bonhoeffer, writing during the fervor of the Nazi celebration of the “perfect man,” states unreservedly, “The exclusion of the weak and insignificant, the seemingly useless people, from everyday Christian life in community may actually mean the exclusion of Christ; for in the poor sister or brother, Christ is knocking at the door” (Wannenwetsch 2012, 366).

Jean Vanier founder of L'Arche, an international federation of communities for people with developmental disabilities and those who assist them validates this claim. He describes L’Arche as a place where:

We live and journey together, men and women with disabilities and those who feel called to share life with them. We are all learning the pain and joy of community life, where the weakest members open hearts to compassion and lead us into deep union with Jesus. We are learning to befriend them, and through and with them, to befriend Jesus” (Reinders 2012, 467).

Vanier is concerned that we not only assist people with disability or do good to them, but that we also learn to simply be with them. It is only in this way that we discover if we are truly a neighbor of the poor (Reinders 2012, 481). “It is about a journey in which people with disabilities have taken the lead in showing how to find God” (Reinders 2012, 467).

Yong, in discussing God’s choice of the “weak” and “foolish” as elucidated by Paul in the early chapters of his First Letter to the Corinthians, postulates that the disabled particularly fit the category of those who are “despised” and

“nothing.” He believes that especially the severely cognitively disabled are the very epitome of the recipients of God’s favor. God’s election of those whom the world has rejected is profoundly understood when witnessed in the disabled

(Yong 2011, 99).

Yong suggests that this can be clearly understood in light of the cross of

Christ which is, “Foolishness to those who are perishing, but to us who are being saved it is the power of God (I Cor. 1:18). He challenges us, “That we have so domesticated the gospel of the cross that we are practically incapable of

(disabled from!?) appreciating how this text can help us formulate a theology of disability” (Yong 2011, 100).

For Yong, in the lives and faces of the disabled we see ourselves and, more importantly, we see the nature of the love of Christ. We, like they, are the

“weak” and “despised” who have been chosen. When we are fully included in the communion of the disabled, we share in the experiential love of Christ.

“Ecclesiologically, it might be said that the church is most truly the body of Christ

when it is centrally constituted by and honors people with (intellectual) disability”

(Yong 2011, 104).

Julian of Norwich was an English anchorite of the Middle Ages. She wrote the earliest surviving Western book to be authored by a woman, Revelations of

Divine Love. Duke Divinity School’s oft recognized theologian Amy Laura Hall believes “seeing” with Julian is way to encounter God’s love with and for the disabled. “Julian’s vision of Christ’s profuse, abundant, prodigal love is to stretch the readers own vision of the boundaries regarding who counts for knowing, birthing, saving, hearing” (Hall 2012, 154).

Hall unpacks Julian’s experiences of lavish love flowing from the very body of Christ into her body. Julian sees herself as representative of all her fellow

Christians both as a sinner and a recipient of the extravagant love of Jesus. Hall says the charity she revels in is a love that blends our social and physical boundaries. It removes barriers we erect in attempt to stay justified (Hall 2012,

154-155).

Hall submits, “This has practical implications for real people living with disabilities and the real people who love people with disabilities, as well as for how those who currently live in the systemic or unacknowledged fear of disability”

(Hall 2012, 154). Hall suggests the biggest challenge for the disabled is not simply in the bodily or physical sense, but in the complicated nature of finding inclusion in the social body and the resultant isolation which can occur. “Julian’s vision undermines an understanding of danger that, in Western culture, has

occasioned a carefully administered division between the fit and the unfit, the independent and the need-ridden” (Hall 2012, 154).

Hall notes that Julian dedicates her work to “all those who wish to be lovers of Christ.” To gain this revelation of Christ one must have a vivid perception of his suffering. She begins her journey by asking for wounds and sickness which will allow her to share in the passion of Christ. In her nearly fatal illness, she experiences a powerful apparition of the bleeding Christ in which she finds safety and protection from her transgressions. Sin and all its ravages, including the things which mark, disable, and separate us, has been completely expunged in the death of Jesus. The scars which remain are not shameful but a badge of honor. Everyone needs this alien virtue, and all have received it. The human family is marked by a shared, “radical dependence” (Hall 2012, 154-157).

Hall says Julian does not write as a theologian leading her pupils toward a doctrinal truth. Instead she offers a prayerful, vulnerable invitation into what she has seen:

In this way, the form of Julian’s text sounds much like the words of some who write on disability. To write and speak from a position that is inescapably (grounded in suffering) is, for some, to write and speak about the daily difficulty, even at times horror, of such a position while even simultaneously praising God for the perspective that this grants. (Hall 2012, 163)

Thurman concludes his treatise on love by reflecting on why it is so transformational. To be truly seen, fully dealt with, and completely embraced is a core longing of all humans. The radiance of love is such that all the rough edges and limitations are smoothed into strengths. Receiving this kind of love births a growing self-acceptance and inspires dreams and possibilities. It becomes the

reference point for all experience and the substance of all meaning. Only God’s love can be the source of such completeness (Thurman 1998, 180-181).

“There is nothing outside of ourselves-no circumstance, no condition, no vicissitude-that can ultimately separate us from the love of God or of one another. And we pour out our gratitude to God that this is so” (Thurman 1998,

28). This is why Paul prays that we may understand this great love (Eph. 3:18-

19). The theological reflections cited here suggest that disability and weakness contribute significantly to our capacity to understand the nature of the love of

Christ and experience it as Paul had. As we plumb the weakness of disability, we begin to ascertain the profundity of love.

Historical Foundation

The scope of this project includes the aspiration that meditative prayer in the Christian tradition will provide help and relief for people living with Tourette

Syndrome. Particularly, the goal is that emotional and relational stress will be reduced leading to an overall improved quality of life. Historically, meditative practices have been used to experience peace through more intimate union with

Christ.

This section will investigate the contemplative practices of the early Greek church fathers, particularly the Cappadocians (Basil the Great, Gregory of Nyssa, and Gregory of Nazienzus); and their disciples; Marcarius of Egypt, Ephrem

Syrus and Evagrius Ponticus. There will be an emphasis placed on their understanding and use of the Jesus Prayer.

Their Practice of Contemplative Prayer

Evagrius Ponticus (345-399 AD), also known as Evagrius the Solitary instructs, “the way of prayer is also twofold: it comprises practice of the virtues and contemplation” (Philokalia 1979, 55). This influential monk of the late fourth century was a disciple of the Cappadocian Fathers and a teacher of John

Cassian and others. He was renowned for his oratorical and literary skills. As both disciple and teacher his famous 153 Texts on Prayer is a definitive work on prayer which elucidates the thinking of the period on this vital spiritual discipline.

It has been preserved in the Philokalia (Makarios 1979, 55).

Evagrius and other early Eastern Fathers and Mothers embraced the ancient Greek virtues of moral judgement, self-restraint, courage, and justice.

They added to these the three Christian virtues of faith, hope, and love

(Mantzarides 1994, 120). They taught the pursuit of these virtues led one not only to true self-love and acceptance but a deepening love for God. In turn, as one’s love for God grows her pursuit of the virtues intensifies. This cycle of spiritual assent moves her toward perfection and union with God (Mantzarides

1994, 121).

Similarly, contemplative prayer works in tandem with the virtues, each encouraging the growth of the other. The more virtuous a seeker becomes, the more they seek God. The more they seek God, the more virtuous they become

(Philokalia 1979, 55). “Prayer is the flower of gentleness and of freedom from anger. Prayer is the fruit of joy and thankfulness” (Makarios 1979, 58).

Prayer, for Evagrius, is an intimate conversation with God. It may be a cry of distress, a Job-like challenge or lament, a joyful exultation or simply silent listening (Clement 1993, 181). “Prayer is a conversation of the spirit with God.

Seek therefore the disposition that the spirit needs, in order to be able to reach out towards its Lord and to hold converse with him without any intermediary”

(Clement 1993, 181).

Contemplative prayer is primarily a prayer of the heart. “It is a cry de profundis, out of the deep” (Clement 1993, 182). A recondite connection is formed between the human soul and the Divine Spirit which transcends the physical plane (Clement 1993, 182). It involves a quieting of the mind (Makarios

1979, 58). Evagrius pleads, “Do not let your eyes be distracted during prayer but detach yourself from concern with the body and soul and give all your attention to the intellect.” Intellect, in this context, for the solitary monk and his compatriots, means mind and spirit, the essence of the person (Makarios 1979, 68).

Undistracted prayer is the highest level of spiritual prayer. It is gained as you renounce all other passions and pursuits to commune with God (Makarios

1979, 50). “‘He who has his mind under control when he prays, and is careful in what he says, keeps away the demons,’ says Ephraim the Syrian. ‘He however, who elevates himself is duped’” (Chrysostomos 1980, 40).

Evagrius Pontus further instructs suppliants to rid themselves of everything that might harass them and approach prayer as a curious child. He commands that they pronounce no words but come in silence. He believed that

giving your intellect fully with love towards God was the doorway to contemplative prayer (Clement 1993, 184).

This project proposes to introduce people living with Tourette Syndrome to the value of contemplative prayer. Teaching them an intentional quieting of the mind and emotions before God for the purpose of experiencing his loving presence. The constant barrage of stimuli exacerbates the symptoms and associated conditions of Tourette Syndrome. A posture of stillness, gratitude and acceptance may offer a welcome respite in their daily routine.

The early practitioners of contemplative prayer considered themselves under constant trials, tests, and spiritual battles (Makarios 1979, 57). The monk’s own mind, with all its distracting thoughts, was often the chief enemy of communing with God through meditation. The body, with its weakness and propensity to long for the temporal and sensual, was a second adversary.

Demons were thought to be behind many of these struggles and were diligently working to deceive and discourage the intercessor (Makarios 1979, 57-71).

Tourette Syndrome may cause a person to feel their own mind and body are the enemy. These ancient monks are empathetic travelers on this path. Through meditation, Evagrius says the Lord enters us and, “Calms the uncontrolled impulses of the body” Makarios 1979, 63).

John Cassian (360-435 AD) was a disciple of Evagrius. He recommended a dialogue with God that was calm, trustful, and quiet. He advised his students to shut the door of their inner sanctuary, as Jesus had required. While wordless,

Cassian believed these prayers had great intensity and should be kept short to avoid distraction (Clement 1993, 184).

His writes a revelatory description of contemplative prayer:

We are praying in our inner room when we withdraw our heart completely from the glamour of our thoughts and preoccupations, and in a kind of secret dialogue, as between intimate friends, we lay bare our desires before the Lord. We are praying with our door shut when, without opening our mouth, we call on the One who takes no account of words but considers the heart. (Clement 1993, 185)

Cassian believed that deep, silent prayer protected the supplicant’s heart from the adversary. A prayer from the heart to the heart of God was heard by him alone. Deep contrition and profound love could be poured out in short spurts in secret and safety (Clement 1993, 186).

Cassian’s approach may prove especially fruitful for the intended beneficiaries of this project. People with Tourette Syndrome often have difficulty trying to achieve calm and clear their mind. The encouragement to withdraw and keep the process brief fits this need. It may be particularly helpful for younger persons or those new to the practice of meditation.

Some monks of the period would rest their chin on their chest while praying the Jesus Prayer (which will be defined later in this document) in rhythm with their breathing. They would seek to detach their mind from all distracting thoughts and focus on the words of the prayer. In such a manner, the whole of one’s being enters a state of meditative prayer (Mantzarides 1994, 127).

This mode of prayer was widely taught by the pedagogues who followed.

“Let your calling to mind of Jesus be continually combined with your breathing and you will know the meaning of silence,” instructs John Climacus (Clement

1993, 204). A biographer of Anthony draws authority for the practice from the first ascetic when he depicts him admonishing his companions with the words,

“Always breath Christ” (Clement 1993, 204).

The practice of mindfulness or, for our purposes, Christfulness, is the intentional awareness of the body as a means to focus on Christ. The profound impact of Tourette Syndrome on the mind and body may be addressed through this process. Serenity may be pursued by paying attention to one’s breathing, heartbeat and body followed by a purposeful meditation on the nearness and love of God.

Basil the Great (330-379 AD) was perhaps the most gifted of the

Cappadocian Fathers. His teaching on mindfulness and meditation emerge from his, Homily on the Words “Be Attentive to Yourself.” He instructs from the text,

“Be attentive to yourself, lest an unlawful word come to be hidden in your heart”

(Deut 15:9).

Basil’s chief concern is that people are susceptible to confusion, deception and sin. He is aware that this failing begins at the level of the mind. Therefore, it is our thoughts which must be guarded. He repeatedly urges his readers throughout the sermon, “be attentive to yourself” (Basil On the Human

Condition).

The way to combat the temptations that come is to be alert to your own state of mind. Basil trains his readers to be present in the moment. “Be attentive to yourself; be sober, able to deliberate, protective of present things, cautious toward things to come.” He contends that this precept will help you enjoy the

moment and gain mastery over your emotions. Pause, and take stock of who you are. Remember that you are loved by God. Through his grace he is for you and with you and within you (Basil On the Human Condition).

Basil suggests contemplating the body as a meditative practice. He details a full scan of all its parts. Through this reflection you will have, “Observed carefully how air is drawn in through breath, how warmth surrounds around the heart, and the organs of digestion, and the channels of blood, from all these you will perceive the unsearchable wisdom of the Creator” (Basil On the Human

Condition). Body awareness is a key component of meditation and mindfulness strategies.

Ultimately, this attentiveness to self makes one attentive to God.

Intentionally halting to be mindful of your surroundings, your thoughts, your body and your feelings can keep you grounded in the present. It offers a peaceable rest in the nearness of a loving God (Basil On the Human Condition).

As noted above, the meditation of the Eastern Fathers was not emptying the mind in a manner that moves one toward detachment but rather an intentional attachment to the person of the Lord Jesus Christ. Their mindfulness of self was inevitably linked to an awareness of God. Evagrius teaches:

We practice the virtues in order to achieve contemplation of the inner essences of created things, and from this we pass to contemplation of the Logos who gives them their being, and manifests Himself when we are in the state of prayer. (Makarios 1979, 68)

Several motifs on prayer emerge from this era. They include a contemplative approach to prayer, the longing for perpetual prayer, a way to express prayer in short, intense bursts, a commitment to stay present in the

moment, and a longing for loving union with God in Christ. These interrelated goals are beautifully blended in the Jesus Prayer.

The Jesus Prayer

(Acts 3:6). The non-canonical Shepherd of Hermas’ claims, “The Name of the

Son of God is great and boundless, and upholds the entire universe” (Similitudes,

9:14).

The reverence for the name of Jesus coupled with Paul’s admonition to

Ultimately, the content of the Jesus Prayer emerged directly from the

Gospel of Luke. It is prefigured in the humble repentance of the tax collector.

There was a great entourage surrounding Jesus and the noise of the crowd reached the blind man’s ears. After inquiring as to the source of the cacophony

he began to cry out, “Jesus, son of David, have mercy on me” (Luke 18:38 NIV).

In spite of efforts to silence him, the blind man repeatedly called out his desperate prayer until Jesus responded.

Although the exact formulation, “Lord Jesus Christ, Son of David, have mercy on me, a sinner,” does not seem to have come into practice until the thirteenth century, Christians from the first century on have been whispering some configuration of these words as their own humble plea for healing, transformation, victory in spiritual warfare or union with Christ (Clement 1993,

204). As early as the fourth century, Evagrius was praying the Kyrie eleison,

“Lord, have mercy,” as a short, repetitive invocation to overcome temptation

(Clement 1993, 187).

Saint Ephrem (306-373 AD) offers a dissertation on the healing of blind

Bartimaeus (Shemunkasho 2014, 281-282). He uses Mark’s account of the story where the beggars name is given. He contends that Bartimaeus’ use of “Son of

David” in his invocation, rather than “Jesus the Nazarene,” reveals both his love and faith. He does not see with physical eyes, but with his inner eyes. This spiritual seeing is because of his faith which, Ephrem says, is the reason he is healed (Shemunkasho 2014, 281-282).

Ephrem makes it clear that he does not see the Jesus Prayer or any prayer as a formula for gaining answers (Shemunkasho 2014, 444-446). It is not an incantation or magical manipulation. Prayer places the seeker’s focus upon

God and realigns his or her attitude. Healing comes from God’s compassion rather than person’s prayer. However, prayer does have spiritual power. It brings

reconciliation and restoration. It has the power to bind and loose and open the doors of heaven. Prayer rightly offered is a “treasure of medicine” (Shemunkasho

2014, 444-446).

Pagan religions of the period believed a name itself contained power. The one invoking a name could wield it as a magical prescription to heal or curse. Not so for the Eastern Fathers and Mothers. They understood that praying the name of Jesus welcomed his manifest presence. In fact, they taught the Trinity was in evidence through this form of meditation:

The Holy Spirit, the Breath of God, is linked to the Word from all eternity. Therefore, when a person’s intellect and breathing utter the name of the Incarnate Word-Jesus-they are united with the Holy Spirit, and the person breaths and thinks in the Spirit. (Clement 1993, 204)

Similarly, as opposed to pagans, they did not think the constant repetition of a name or mantra was itself efficacious. Instead it is a word addressed to

Someone. It is a cry for assistance that denotes relationship and faith. Prayer was never an end in itself; but a means to experience God. Repetition is of no value unless it is pregnant with content and expectation (Clement 1993, 202).

John Climacus (57-649 AD) explains that the name of Jesus or a short formula of need, preferably from the Scriptures, calls the mind back from wandering. It is the way to remain mindful of God’s presence and our need for his aid. Prayer of this sort may be practiced during work, on a journey, as one lays down to sleep, and when they rise (Clement 1993, 203).

The invocation of the name of Jesus was also recognized as a powerful ally in the battle against spiritual forces of darkness. Climacus says it is the,

“principle weapon of the faithful” as they war against evil (Mantzarides 1994,

126). Evagrius knows Christ’s name and presence provide protection and peace no matter how much the enemy rages (Makarios 1979, 66).

The desert seekers followed the teaching of Paul in saying one can only truly petition in the name of Jesus by the Holy Spirit. The simple repetition of his name is a loving dialogue that never ceases. Like the first familial expression

“dada” from a little child, it is the intimate cry of the soul for its Lord. Meditation on this name enables us to share in the eternal relationship of love flowing within the

Trinity (Clement 1993, 205-207).

The Jesus Prayer or similar short, simple prayers are accessible to the individual with Tourette Syndrome. In moments when stressors are surrounding her, when physical tics wrack her body or mental tics cloud her mind, invoking the name of Jesus is a path to relief and peace. A moment of mindfulness coupled with a whispered meditation from the heart could be the antidote needed.

Chapter Three will be a review of the literature that is valuable to the focus of this project. Contemporary sources which impact the project will be examined.

The material will present a theoretical frame and a contemporary setting for the project.

CHAPTER THREE

REVIEW OF THE LITERATURE

James Patterson, in his book Against Medical Advice, writes the life story of a friend’s son who suffers from Tourette Syndrome. He titles one chapter,

Brainstorm (Patterson 2008, 12). This descriptive word has been echoed by many who experience the trauma of living with Tourette Syndrome, ADD, ADHD,

OCD, Autism, Asperger’s and other disorders on the neurological spectrum and those who treat them. It describes not only the mental tics associated with

Tourette Syndrome, but the related anxiety, social stresses, employment and recreation challenges, anger, and depression.

The purpose of this project was to create a resource on spiritual exercises that will provide support for families participating in the Pennsylvania Tourette

Syndrome Alliance. The research question was: In what ways does this resource on spiritual exercises provide support for families participating in the

Pennsylvania Tourette Syndrome Alliance?

Because tics tend to produce a plethora of social and emotional struggles, treatment models seek both to alleviate the tics themselves and address the attending difficulties. Diagnosis is rooted in observational inferences and treatment strategies are varied and only moderately successful. There is no cure for Tourette Syndrome. The following 2019 special report from the American

Academy of Neurology exposes the demanding reality of the condition.

The article entitled, Practice guideline recommendations summary:

Treatment of tics in people with Tourette Syndrome and chronic tic disorders has

as its objective recommendations on the assessment and treatment of people with Tourette Syndrome. A multidisciplinary panel developed the protocols.

Physicians, psychologists, and patient representatives participated in constructing the recommendations (Pringsheim 2019, 896-906).

Forty-six recommendations were made regarding the assessment and management of tics in individuals with Tourette Syndrome and chronic tic disorders. These include counseling for diagnosed children and their parents on the nature of tic disorders, special training for teachers and peers, identifying comorbid disorders, and periodic reassessment of the need for ongoing therapy

(Pringsheim 2019, 896-906).

No two Tourette Syndrome cases are alike so individualized care is necessary. Treatment choices should come from a collaborative process which includes the patient, caregivers, and clinician, during which the benefits and harms of each intervention and its impact on comorbid disorders are considered.

Treatment options include watchful waiting, which is essentially non-intervention if the patient is adequately coping (Pringsheim 2019, 896-906).

A Comprehensive Behavioral Intervention for Tics is recommended. This approach includes relaxation techniques and habit reversal training. Both modalities will be detailed below in this document. Literature on these two procedures for Tourette Syndrome represent the bulk of this review. In addition, the panel suggested numerous medication interventions. The use of deep brain stimulation in adults with severe, treatment-refractory tics is provided as well as guidance for future research (Pringsheim 2019, 896-906).

Two of the most common comorbid conditions of Tourette Syndrome are

ADHD and OCD. Specific treatment protocols are designated for these conditions. Continual reassessment of each therapy is encouraged because efficacy may diminish or certain approaches may even become detrimental

(Pringsheim 2019, 896-906).

This article represents the leading edge of treatment inferences from recent research. The wide range of strategies, the ever-vigilant assessments, the changing medications, and protocols all speak to the difficulty in treating this disorder. The emphasis on training and education for the patient and all involved in their lives validates the comprehensive impact Tourette Syndrome has on the individual and others in their environment. It also provides the rationale for a project aimed at addressing these challenges from a Christian perspective. The literature reviewed will provide insight into the competency of mindfulness and meditation practices.

The following information from the Pennsylvania Tourette Syndrome

Alliance (PATSA) is presented in seminars through Disabled by Love. Disabled by Love is a non-profit organization for families affected by Tourette Syndrome, founded by my wife Julie and myself. These symptoms and conditions are what the mindfulness and meditation practices in this project propose to address.

Tics will wax (heighten in intensity) and wane (lessen in intensity) and are ever changing. Some tics may be present for a short period, some may be present for a month or a year, and still others may persist throughout an individual’s entire lifespan. These are sometimes referred to as ‘resident tics’

(Pennsylvania Tourette Syndrome Alliance).

Tics are involuntary movements, utterances, or thoughts. Most individuals with Tourette Syndrome can suppress some, or all, of their tics for a limited amount of time. However, eventually the tics need to be released. This release will result in more intensity of the tics and will cause increased anxiety. Thus, holding back tics is not recommended. Suppressing is much like our ability to hold back a yawn or cough (Pennsylvania Tourette Syndrome Alliance).

When an individual suppresses one or more of their tics it can cause physical discomfort as well as requiring an incredible amount of concentration and energy. (A similar scenario is trying not to sneeze—it does not go away and takes a great deal of focus to quash). These pent-up tics must be let out at some point and after being suppressed there is often an explosion of tics. Tics are often worse after being held in or muffled (Pennsylvania Tourette Syndrome

Alliance).

Although tics wax and wane with little ability to predict the changes, tics are often exacerbated by stress, anxiety, and excitement. Additionally, when

attention is drawn to a tic this increases stress and will most likely increase the tic

(Pennsylvania Tourette Syndrome Alliance).

Transition can also cause an increase in tics along with any change in routine. A problematic transition can be as little as stopping one activity to move onto another or as large as moving across the country. There are multiple transition moments in any given day (Pennsylvania Tourette Syndrome Alliance).

This chapter examines literature that suggests the potential use of

Christian meditative prayer to calm the “brainstorm” for people who have

Tourette Syndrome or similar neurological disorders. While some of the writing may not examine a direct connection between meditation and Tourette

Syndrome, conclusions will be drawn from the principles revealed. It is not an attempt to evaluate biological changes in the brain. Instead, it will focus on examples of the benefits of meditative prayer which could translate into practice for neurological disorder sufferers. Terms used interchangeably or to describe similar practices in the literature include meditation, mindfulness, centering prayer, mindful awareness, and contemplation. The descriptor Christian will be added when appropriate and Christfulness is sometimes used as the Christian form of mindfulness.

Clinical studies of Tourette Syndrome patients using meditation practices will be juxtaposed with writings on Christian meditative prayer. First, we will note the use of meditative prayer as a form of preparation for situations which may contribute to brainstorm. Often the anticipation of an event or encounter, whether positive, negative, or neutral, moves an individual with Tourette Syndrome into a

heightened and anxious state. The reviewed literature will help us evaluate the prevalent thinking on whether meditation is effective as a preemptive strategy.

Secondly, the material will consider mindfulness as an intervention response during a stressful situation or episode. Episodes of overstimulation, meltdown or stupor are not uncommon for Tourette Syndrome patients in disquieting circumstances. The discussion will seek to identify the pragmatic connections between the scientific studies and the contemplative discipline.

Thirdly, the overall impact on the quality of life for those attempting meditation and mindfulness practices will be considered. The perpetual struggle for homeostasis is a common pursuit among the persons diagnosed with

Tourette Syndrome. Again, we will merge the thinking of contemporary authors with current clinical trials.

Finally, we will examine a 2017 scholarly article which argues a critical piece of the premise of this project. Using Christian meditation practices to enhance mental health, particularly, where it varies from Buddhist, other Eastern and secular techniques as an understudied modality. Coupled with a 2018 study on mindful awareness in a uniquely Christian context, we will hear from the vanguard of thinkers in this arena.

Preparation

Much has been written concerning the centering power of meditative prayer. For this review, Richard Foster’s definition from his groundbreaking book

Celebration of Discipline will be used. Foster launched a revolution in spiritual formation with his seminal book. His influence continues to the present. He

states, “Christian meditation, very simply, is the ability to hear God’s voice and obey his word” (Foster 1978, 17). He further suggests it is best understood as the capacity to move into a calm, assured state of mind that is anchored in the person of Jesus Christ. It is a reference point which holds and guides one through the mundane or chaotic (Foster 1978, 30).

Thomas Merton adds that Christian meditation has its origin in God. Its underlying strength is that God seeks us first. Because we are the objects of his love, he desires to be present in us and form union with us. The Christian contemplative life is then, “The search for peace, not in abstract exclusion of all outside reality, not in a barren negative closing of the senses upon the world, but in the openness of love” (Merton 2006, 32). The person with Tourette Syndrome cannot hide from the onslaught of stimuli from within their own body or the people and activities around them. However, connecting with God through meditation can offer a path to centering on the love and presence of Jesus.

Campolo and Darling in The God of Intimacy and Action, detail the use of meditative prayer by those who endured the crucible of civil rights demonstrations in the American south during the 1960s (Campolo and Darling

2007, 161). Martin Luther King, Jr. led many of these events. He required participants to sit in quiet prayer and reflection before engaging the anger, racism and resistance of law enforcement and counter demonstrators. Many meditated for hours, preparing to love and forgive their enemies. By emptying themselves of hostility before the ordeals they would face, they were empowered to be bold and certain (Campolo and Darling 2007, 161).

According to the scholarly article, Habit Reversal Training for Tourette

Neurologists widely affirm that the severity of tics can be profoundly impacted by environmental factors. Some of the key antecedent variables are the emotional and cognitive state of the individual (Himle, et al 2006, 719-725).

Before entering environments, which could potentially trigger or exacerbate tics, the article’s authors suggest tic sufferers use relaxation exercises (Himle, et al

2006, 719-725).

Willams says that Dr. Jeffery Lazarus believes self-hypnosis can help control Tourette Syndrome in fewer sessions than habit reversal training. His study is reported in Tourette Syndrome: Perspectives on Diseases & Disorders.

With his partner, Dr. Susan K. Klein of the University Hospitals in Cleveland, OH, they focused on thirty-three young Tourette Syndrome patients (Williams 2013,

80).

Williams reports that subjects in Lazarus’ study first observed a video of a young boy doing the exercise they were going to learn. The example provided

reassurance that they were not alone in their struggle. It offered hope that they could take control of their body and motivation to attempt the technique (Williams

2013, 82-83).

Williams states Lazarus’ patients were guided in how to move into a relaxed state. They were invited to focus on a nexus of concentration that would take them into a “special place.” At this point they were asked to imagine the feeling just before a tic happens. Then imagery, such as a stop sign or light switch, was suggested as a way to halt the tic. The young people were encouraged to conceive their own images as well (Williams 2013, 82-83).

Willams shows the self-hypnosis Lazarus taught in the study is quite similar to mindfulness and meditation practices described by the Foster, Rohr and other contemporary authors on the topic. The relaxation and focus strategies mirror the teaching of these modern contemplatives. The research subjects were assigned to practice the exercises three times a day between their training sessions. The goal was to cultivate mindfulness about their bodies. As they reflected on their experience, they were to note their level of awareness concerning the onset of tics and how they felt while they were occurring (Williams

2013, 82).

Williams reports the Lazarus study showed seventy-nine percent of the thirty research participants achieved enough improvement in tic control to report personal satisfaction with the technique. This is the largest case study of its kind to date. Most of the participants experienced a dramatic change in less than four sessions (Williams 2013, 82-83).

Both studies give serious attention to the comorbid conditions of Tourette

Syndrome. While tics may range from bothersome to debilitating, it is often the associated issues which cause the most consternation for the individual with

Tourette Syndrome. Social anxiety, depression, and fear impact their quality of life daily. Many choose to remain in the safe space of home for extended periods of time.

In Lifesigns, Henri Nouwen uses “home” as a metaphor for the deep longing of all people for intimacy and safety. He believes this universal condition is especially visible in those on the fringes of society. People in prison, mental hospitals, nursing homes and refugee camps illustrate the homelessness of our society. “Some are homeless because of their inner anguish,” says Nouwen

(Nouwen 1986, 27).

Fear, for Nouwen, is the great obstacle to intimacy and pushes people away from one another. This is true not only in the person with Tourette

Syndrome or other conditions, but in those who encounter them. The deep social anxiety of some with Tourette Syndrome is often caused by their fear of how others will perceive them.

Nouwen’s friend, Jean Vanier observed this fear as others interacted with the mentally and physically handicapped among whom he lived for over twenty years. Nouwen says,

He saw that these severely handicapped people seem like strangers living in another world, like prisoners caught behind bars of their own deformation, like sick people who cannot help themselves, like poor and helpless beggars who make no contribution to society. He saw how they evoke fear in the hearts of those who regard themselves as normal. (Nouwen 1986, 32)

Nouwen teaches, “If fear is the great enemy of intimacy, love is its true friend” (Nouwen 1986, 35). He believed love was found in coming home to the heart of God. He points out the motif of longing to dwell in the house of God in the Psalms, Jesus making his home among humanity, and his constant invitation for his disciples to make their abode with him (Nouwen 1986, 37-39).

“Prayer is the most concrete way to make our home in God,” writes

Nouwen (Nouwen 1986, 39). He teaches in Making all Things New that the disciplines of mindfulness and meditation involve setting our hearts on Jesus and listening. In the stillness, our anxieties, doubts and fears are met with the love of

God. We become attentive to his voice. “As we empty ourselves of our many worries, we come to know not only with our mind but also with our heart that we are never really alone, that God’s Spirit was with us all along” (Nouwen 1981,

74).

Through meditation and mindfulness, the person with Tourette Syndrome may discover a portable home in the heart of God. They begin to carry with them a comfort in the midst of the brainstorm, anxiety, and rejection of others. Often conflicts, challenges and tensions are unavoidable. However, preparatory meditation and mindfulness offer an empowering way to meet these obstacles.

Clement determines that the collective writings of these sages point to an alternative path in the “rat race” of our daily lives. Christian meditation frees one from projecting the anguish that torments us on to others. We are prepared to face the tests or even cruelties of our life with imperturbation (Clement 1993,

270-271).

Campolo and Darling note that meditative prayer creates the kind of heightened awareness the Tourette Syndrome studies allude to. It enables us to see ourselves and our world more clearly. Mundane and repetitive activities as well as special challenges are met with a new vigor and capacity (Campolo and

Darling 2007, 6).

Contemplating our position in Christ, Clement suggests, offers relief from inner turmoil and negativity toward others. Meditating on the revelation of love seen in the cross allows us to be swept up in the immensity of Christ’s identification with the suffering and rejected. Our capacity for self-love, other- love, and even enemy-love is enhanced (Clement 1993, 270-271).

Bishop Desmond Tutu dealt with violence and racism in his battle against

South African apartheid. In The Soul of a Leader, his friend, Margaret Benefiel details his practice of prayer in wrestling with both the outward pressures and inward turmoil he experienced in this struggle. He acknowledged that without frequent times of reflection and centering prayer he could not have endured. Tutu emphatically states, “I wouldn’t have survived without fairly substantial chunks of quiet and meditation” (Benefiel 2004, 121).

Foster highlights Jesus’ practice of withdrawing from everyone, including his disciples, on a regular basis (Foster 1978, 18). His presence was constantly sought, and he was always surrounded by a cacophony of demands, expectations, challenges, questions and desperate hopes and fears. Yet he remained calm and self-controlled.

“In his intimate relationship with the Father, Jesus modeled for us the reality of that life of hearing and obeying” (Foster 1978, 18). He lived and taught the concept of abiding in God. He encouraged his disciples to emulate this practice (Foster 1978, 18).

Foster contends that Christian meditation is far better than psychological manipulation or a great way to procure the desired alpha brain-wave pattern.

Instead, it is communication with the loving, infinite and personal Creator of the universe. The focus on encounter sets Christian contemplation apart from its secular and Eastern forms (Foster 1978, 22-23).

The Christ-centered nature of Christian meditation lifts it beyond the self- help strategies of the Tourette Syndrome studies. It is not merely convincing the brain to respond differently but tapping into real spiritual power. The love experienced and the assistance offered means the person does not struggle alone.

Thomas Merton describes this reality as, “Living contact with the Infinite

Source” (Merton 1968, 222). It is more than the connection of minds and hearts.

He declares that this experience of union is the contemplative way of the ancient

Christian monastics. This kind of meditation is a, “Transcendent union of

consciousness in which man and God become, according to the expression of

St. Paul, ‘one spirit’” (Merton 1968, 222). Through meditation, the person with

Tourette Syndrome invites the presence and power of Christ into their journey.

Foster proclaims Jesus’ ability to remain serene in extremely diverse and chaotic situations is compelling. Foster points to his habit of seeking solitude with the Father as the source of his power. He suggests this practice prepared Jesus to enter the rough and tumble turmoil of his world (Foster 1978, 18). He further claims that the purpose of meditation is to posture oneself so that Christ can construct an “inner sanctuary in the heart.” This refuge is portable and inhabited by the presence of God. It may be carried within the individual with Tourette

Syndrome into each encounter or challenge. It is an emotional and spiritual space designed to provide peace (Foster 1978, 20).

Richard Rohr in The Naked Now goes a step further. He calls Jesus the

The Tourette Syndrome habit reversal model and the self-hypnosis method, while not including a religious element, nevertheless recognizes the value of meditation, relaxation, and self-awareness. Patients in the studies were asked to practice these techniques in private until they had some level of mastery. Their sense of self and what was happening in their mind and body

helped them to respond positively to both internal and external stimuli which normally lead to uncontrolled tics. Alternative behaviors could then be chosen which limited the extent and level of the occurrence. The American Psychological

Association’s guidelines have determined that this strategy is “probably efficacious” in reducing tic episodes (Himle, et al 2006, 722).

Intervention

According to the National Tourette Syndrome Alliance, a neurological breakdown for a Tourette Syndrome sufferer can be a traumatic experience to endure or witness. Researchers are looking for ways to limit episodes where an individual is caught in a maelstrom of motor, vocal or mental tics and/or emotional upheaval. These events can be disrupting and even debilitating, making it difficult for the person to carry out daily activities (Pennsylvania

Tourette Syndrome Alliance).

One recent pilot study entitled; Mindfulness-based stress reduction for

Tourette Syndrome and chronic tic disorder, tested the value of mindfulness- based stress reduction as a behavioral treatment. The plan was to provide participants with a method for establishing a personal sense of awareness and well-being that would enable them to respond proactively to an episodic onset of tics and other comorbid issues. It was designed as an intervention strategy

(Reese, et al, 2014, 293-298).

Mindfulness in this study is a breathing exercise. In classical Buddhism, sixteen in and out breaths establish mindfulness in body, feeling, mind and objects of the mind. In Come to the Quiet, John Michael Talbot presents a

Christian approach to the discipline. He argues that, unlike Buddhism, which moves toward a stillness beyond “thoughts, emotions, or bodily forms,” Christian mindfulness or Christfulness, reaches its zenith in Divine union. Ultimately, heaven will end all imbalance and maximize “every human faculty.” Simply put,

Buddhism emphasizes detachment while Christianity focuses on attachment to

Christ (Talbot 2002, 56).

Dwight Judy in Christian Meditation and Inner Healing posits that mindfulness meditation helps us become aware of unconscious hurtful patterns.

The conditioned habits of negative emotional and mental responses are exposed. We began to get in touch with what “triggers” us (Judy 1991, 55).

The Reese Tourette Syndrome study used a modified version of traditional mindfulness breathing techniques. Both the Buddhist and Christian traditions of mindfulness utilize similar approaches intended to bring one to a centered, even transcendent position of awareness. People were trained in mindfulness breathing in two-hour classes for eight weeks. They participated in one four-hour retreat (Reese, et al 2014, 293-298). Their newly acquired skill was valuable for the concerns of this review, preparation, and intervention.

The program was deemed feasible for an efficacious treatment model.

Nearly sixty percent of participants demonstrated decreased levels of tics and tic severity. Mindfulness was an inhibitor as well as an effective intervention at the onset of a tic episode. “Improvements in tic severity were correlated with increases in self-reported levels of mindfulness” (Reese, et al 2014, 293-298).

Campolo and Darling observe that the civil rights activists who meditated before marches and other events also practiced Christfulness during the demonstrations. Many reported a special awareness of the presence of God.

There are numerous testimonies from the participants that something supernatural enveloped them even as they suffered persecution, ridicule, and rejection (Campolo and Darling 2007, 190).

Benefiel records how several leaders in a variety of roles have chosen to break what she calls the “cycle of violence” in their sphere of influence. Clarena

Tolson is the streets commissioner for the city of Philadelphia. She oversees nearly two thousand employees. Tolson faces political and interpersonal conflict on a daily basis. She is a Christ follower and begins each day in contemplative prayer (Benefiel 2004, 122-124).

Tolson also responds to her combative environment with prayer. She tells of a physically violent encounter that occurred while she and members of her team were working the streets. It was on the verge of escalating. Some of her crew wanted to fight, others to run. Tolson chose to gather them in a circle for prayer. As they silenced themselves and became mindful of their feelings and the needs of others, the situation modulated downward (Benefiel 2004, 125).

Mental tics can be among the most troublesome for people with Tourette

Syndrome. Repetitive thoughts, like having a song stuck in your mind, can dominate the obsessing person to the point of incapacity. Like the environmental factors in the experience of Tolson and King, they are not in the control of the individual. The key is what kind of response is appropriate. The mindfulness

study helped people to reduce stress by taking control of their thoughts and their responses to environmental issues they could not dictate (Reese, et al 2014).

Dwight Judy directs people to gain this kind of stasis through centering prayer. Judy acknowledges the inner battle of negative self-talk, worry, and anger that many experience. He quotes the Christian classic, The God of Unknowing:

When you feel utterly exhausted from fighting your thoughts, say to yourself: ‘It is futile to contend with them any longer,’ and then fall down before them like a captive or coward. For in doing this you commend yourself to God in the midst of your enemies and admit the radical impotence of your nature. (Judy 1991, 112)

Judy postulates that relinquishment frees one from self-effort. “Letting go” allows the person to interrupt the flow of inner negativity and rest in God (Judy

1991, 112). The Tourette studies claim that the resulting emotional struggles of the tics are among the primary challenges for their patients. Cultivating a practice which addresses these feelings in anxiety inducing scenarios is desirable. The empowering language of Judy resonates with the goals of the Mindfulness study.

In his writing on prayer, Clement offers numerous quotes from men and women who had experienced inward and outward struggle. He suggests a consensus which emerges from their writings. The practices of contemplation, meditation and Christfulness offer a positive manner of response to trouble. It is in the crucible of trial that the true value of meditation emerges (Clement 1993,

181-191).

Isaac of Nineveh provides a taste of the wisdom offered in The Roots of

Christian Mysticism. “Let us not be troubled when it befalls us to be plunged into darkness, especially if we are not responsible for it.” He goes on to detail how

contemplation connects one to the presence of God. The unwelcome invasion of tics and associated conditions echo Isaac’s “trouble” and “darkness” for which the individual is not responsible; in the hour of distress true transformation occurs for the soul that rests in that awareness. It is here that a previously unknown stability and strength is gained. Clement encourages the modern contemplative to pursue this peace through meditation (Clement 1993, 188). Recent studies are validating the rebirth of the ancient Christian practices.

A one-month follow-up to the Mindfulness-based stress reduction for

Tourette Syndrome and chronic tic disorder study demonstrated that therapeutic gains had been maintained. Mindfulness practices were transforming the lives of tic sufferers. Because of these promising findings, larger trials have been approved (Reese, et al 2014, 293-298).

Maintenance and Quality of Life

Richard Rohr understands meditation, not just a way of life but as the way of life! He teaches that true spirituality is to live in awareness, to be spiritually awake. He illustrates the concept by describing three men who view a sunset.

One enjoys the beauty; another enjoys the beauty and contemplates the scientific realities behind it. A third embraces both those experiences plus stands before the moment in wonder at the underlying “mystery, coherence and spaciousness,” that connect him to the sunset and everything else. For Rohr, this is seeing with the “third eye.” It is seeing and living in the true self (Rohr 2009,

27).

A peer-reviewed article, Quality of life in adults with Gilles de la Tourette

Syndrome, by Isabell Jalenques, appeared in BMC Psychiatry in 2012. It was based on an extensive research project designed to measure the quality of life for people living with Tourette Syndrome. Factors contributing to a higher quality of life (QOL) index were identified. Jalenques uses the World Health

Organization matrix for QOL. Four domains of health were considered: physical, psychological, social, and environmental. Ten psychiatric factors were postulated including depression, anxiety, and anger-hostility (Jalenques 2012, 109). These are the most (though not only) relevant areas of investigation for the scope of this review because of the direct impact of meditation, mindfulness, and relaxation techniques.

The study noted that ultimately it was depression and not the severity of tics that was the main predictor of a reduced QOL. However, depression emerged in part because of restricted activities due to social rejection and the resulting feelings of embarrassment. The research clearly indicated a lower level

QOL for Tourette Syndrome patients when compared to healthy population studies. The researchers concluded that “a powerful treatment for depression” should be part of a comprehensive care plan for Tourette Syndrome. Because the depression was environmental and condition related, medication was not identified as the only or even primary treatment (Jalenques 2012).

Alan Peterson and Nathan Azrin offer the results of their study in a paper titled, An Evaluation of Behavioral Treatments for Tourette Syndrome. They observed patient tic reduction responses to three therapies: habit reversal,

mindfulness (awareness) and meditation with relaxation techniques. More comprehensive habit reversal studies have been done since their work (as noted above in the Himle study). However, the findings in the areas of mindfulness and meditation remain relevant (Peterson and Azrin 1992, 167-174).

Peterson’s subjects were trained in non-religious forms of self-awareness and relaxation. Subsequently, they practiced these new skills over a six-week period. At two-week intervals, they would be observed in a clinical setting for several hours. While habit reversal training made the greatest impact, mindfulness practices reduced tics by 44% during the observation phase and meditation exercises showed a 32% drop during monitored sessions (Peterson and Azrin 1992, 167-174). Ongoing research continues to compare the results of the three therapeutic strategies. The shorter time for training and practice coupled with the accessibility and attainability for more people make the meditation modalities attractive. However, the greater tic reduction results favor habit reversal training.

A 2014 study called Mindfulness, Christian Devotion Meditation, surrender, and worry published in Mental Health, Religion and Culture, sought to measure the impact of surrendering to God through Christian centering prayer in the Thomas Keating construct. Keating’s guideline has four components designed to cultivate what he calls “interior silence.” They include: experiencing a sacred word that identifies consent to the presence and activity of God within; rest in the sacred Word in a manner that goes beyond the common daily awareness; unloading of pain, trauma, negative experiences and other obstacles

to connection with God; and evacuation which means the release or acceptance of experiences while recognizing the presence of God in them (Frederick and

White 2015, 850-858).

Quality of life indicators were a chief concern for the investigators,

Thomas Frederick and Kristen M. White. Worry and anxiety in Christians often lead to a diminished sense of kinship with God. Concomitantly, negative health issues and a lower satisfaction with life emerge. The study proposed to mitigate that variable through centering prayer. They hypothesized that relinquishment to the will of God was a vital element of the process (Frederick and White 2015,

850-858).

Five previous empirical studies in centering prayer were referenced. Three were comparative studies that demonstrated a consistent result of increased pain tolerance, lower anxiety, less depression and greater spiritual outcomes for the test group using Christian meditation. The final two studies revealed marked improvement in several quality of life indicators for the participants. None of the research focused singularly on the aspect of surrender as the primary variable, although it is the agreed emphasis in Keating’s centering prayer model (Frederick and White 2015, 850-858).

Based on this work, Frederick and White determined to target the impact of surrender to God in centering prayer. Surrender in the Keating formulation means yielding to the meditator’s perception of God’s will in the midst of their psychological stress. Frederick and White measured the experience of 209 diverse participants. They used the Southampton Mindfulness Questionnaire to

assess awareness, the Penn State Worry Questionnaire to measure the trait of worry and the Surrender Scale developed by Wang-McDonald and Gorsuch to identify coping style in relation to consenting to God when his rule or will is different than the individual wants (Frederick and White 2015, 850-858).

The main finding indicates that surrendering to God is “a mediation variable for Christians in coping with worry.” Surrender is similar to the collaborative style of coping which involves the participation of others. However, it adds the component of self-sacrifice. Christfulness was determined to be an important way to process distressing thoughts and experiences (Frederick and

White 2015, 850-858).

Judy says that we have become separated from our true selves in our day-to-day existence. He identifies this as “soul-loss.” He believes meditation helps us recover our soul, bringing a heightened sense of awareness in our routine activities (Judy 1991).

Benefiel postulates that spirituality rooted in the practice of meditation can be transformative for individuals, families and even organizations. She argues that as Western culture became enamored with the scientific, the external and the material, we have descended into spiritual chaos. We have lost the healthy practices of Christfulness and meditation. Her material is based on multiple interviews with leaders who have lifted themselves and those around them out of this morass. For her, the spiritual health benefits of the individual transfer to people within their sphere of influence (Benefiel 2004).

Peterson and Azrin noted an increased benefit of the behavioral treatments over time. There was a measurable cumulative effect. The longer the patients practiced the various techniques, the more efficacy they had. The trend caused the researchers to hypothesize that through repetition the cogency would continue to rise. They expressed hope that these alternative treatments, if integrated permanently, could reduce or even eliminate the need for medication in some Tourette Syndrome patients (Peterson and Azrin 1992, 167-174).

Talbot’s contribution to this dialogue emerges from the Christian concept of “the sacrament of the present moment.” However, he cites a similar Buddhist expression, “stop and realize,” to make his point. He unpacks the idea of developing awareness in daily practices such as standing, sitting, reclining, acting, speaking, etc. Noting how and why we do certain things creates an alertness (Talbot 2002, 57). It is the state of being Rohr called, “awake” (Rohr

2009, 27). It is the kind of mindfulness the Tourette Syndrome researchers acknowledge was helpful for reducing tics, anxiety, and depression in their subjects. The Christian meditation researchers concur with these results.

Uniquely Christian Contemplation

Authors Denis Larrivee and Luis Echarte make the case for studying an authentically Christian approach to contemplation and mindfulness (Larrivee and

Echarte 2017, 960-978). Their article Contemplative Meditation and

Neuroscience: Prospects for Mental Health, claims that while wide work has been done identifying the relationship between personal spirituality and positive

mental health, it is nearly all drawn from secularized versions of East Asian religious practices (Larrivee and Echarte 2017, 960-978).

The present appeal to mindfulness resides in an, “impressive and reproducible range of phenomenological benefits that cross cognitive and corporal boundaries, and which have therefore been proposed as beneficial to mental and bodily health” (Larrivee and Echarte 2017, 960-978). The Tourette

Syndrome studies cited in this document are part of the milieu of this curiosity.

However, they fit the blueprint of being secularized appropriations of Eastern religious practices. While meaningful, they do not fully elucidate the value contained in Christian or religious meditation including Buddhism, Islam, and other contemplative traditions.

Larrivee and Echarte report on the new and significant body of data demonstrating physiological changes in the brain through prolonged meditation.

While not the focus of this project, the information has led to the approval of mindfulness treatment models for bipolar disorder and attention-deficit hyperactivity disorder (Larrivee and Echarte 2017, 960-978). Both are common comorbid conditions of Tourette Syndrome. Hopeful possibilities for the Tourette

Syndrome patient are suggested by these changes.

Christianity and Eastern religious meditation, in contrast to secular approaches, share a relational praxis that has a priority on one’s gracious posture toward others. Where Christian meditation parts ways with both other forms is in its distinctive commitment that prayer, as Pope Benedict XVI wrote, “is a personal, intimate, and profound dialogue between man and God.” His

affirmation came as part of a statement urging his Church not to lose the “correct and communitarian” nature of prayer (Larrivee and Echarte 2017, 960-978).

These two distinctives address key elements of the personal and social isolation Tourette Syndrome patients often experience. They face rejection and may struggle to feel empathy for others. The deep connection to God and his love as touted by Campolo and Darling and others above provides a basis for an improved sense of self-worth and the capacity to be aware of the feelings and needs of others (Campolo and Darling 2007, 161).

Nouwen pushes us a step further by emphasizing the empathy and solidarity that can be developed between the disabled person and the wider community through Christian mindfulness. He suggests there is a spiritual dimension to human connection that is singularly concentrated in the person of

Jesus. By finding our home in the, “Incarnation of God in Jesus Christ all human flesh has been lifted up into God’s own intimacy” (Nouwen 1986, 44).

Larrivee’s and Echarte’s study recognizes the similarly efficacious nature of Christian meditation and the current secular techniques and suggests the former should be recognized as beneficial to mental health. In fact, it may be uniquely poised to extend the range of benefits beyond mindfulness. “Unlike

(secular) mindfulness, a personal relationship ordered to God, one emphasized in contemplation, is inherently meaningful and grounds the awareness that its meaningfulness is both unconditional and permanent” (Larrivee and Echarte

2017, 960-978).

One primary way this works itself out practically in ongoing praxis is the role of personal liberty in meditation. The secular adaptation seeks to be free from the imposition of emotional or cognitive distractions. It is fundamentally self- regulating and operates on the principle that mental health is confined to the brain and individual alone. Christian meditation is focused on transformation through relational connections with Jesus and others (Larrivee and Echarte 2017,

960-978).

While the reviewed studies encourage the individual to find aid through the meditative approaches tested, they lack the element of authentic connection to something beyond themselves. Christian centering prayer, according to

Campolo, “Involves entering into a deep and profound time of stillness that allows

God’s love and grace to mystically come into us and wash over us so that we are filled with the love and compassion of Jesus Christ” (Campolo and Darling 2007,

131). It is here that the mindfulness studies and the Christian contemplation writers part ways.

Larrivee and Echarte demonstrate there is more hope than simple cognitive control mindfulness. Christian and Eastern religious practices extend to the relational and Christian contemplation reaches beyond to a metaphysical reality. The experiential transformation sought happens in community with other people and is empowered by the living presence of Jesus Christ. This is more consistent with the multiple dimensions of the individual and offers positive prospects for mental health (Larrivee and Echarte 2017, 960-978).

Frederick and White admit it must be acknowledged that for Christian clients there may be reticence to mindfulness practices due to the perceived

Eastern religious roots. Some may express concerns that the model could inadvertently impose a worldview they do not wish to embrace (Frederick and

White 2015, 850-858). Campolo and Darling address this concern. “Centering prayer is, first and foremost, Christ-centered. That makes it distinctly different from New Age and other forms of silent meditation.” The person is not emptying themselves to achieve Nirvana. The goal is personal relationship with Christ rather than absorption into an impersonal All. It is yielding of one’s spirit in silent concentration to Christ to gain greater attunement with oneself and God through the Holy Spirit (Campolo and Darling 2007, 139).

A South Korean study undertaken in 2018 is the kind of work Larrivee and

Echarte were calling for. It is germane to this project because it uses overtly

Christian meditation to measure the resulting increase in empathy among the participants. Pricilla Hwang conducted the research among Korean Christian mothers who are raising teenage children and published her results in a Christian

Education Journal article titled; Mindful Awareness as a Method of Christian

Scripture Meditation among Empathic Korean Mothers in South Korea (Hwang

2018, 224-242).

Hwang’s efforts mirror the secularized studies noted earlier in that she embraces the demonstrated value of mindfulness for stress-reduction and disengaging from destructive thoughts and negative emotions. She differs from

Larrivee and Echarte in that she understands these studies to demonstrate

improved interpersonal relationships. Although it may be that she sees this as a by-product of enhanced empathy rather than an intentional outcome. She also cites the recent documentation of physiological changes in the brains of consistent meditators (Hwang 2018, 224—242).

Hwang’s stated goal was to promote empathy in the subjects. Her sample group was chosen because of environmental and cultural factors which create a high stress level and cause breakdown of interpersonal relationships with their teenage children. These included intense pressure on mothers to prepare their children academically in an extremely competitive environment exacerbated by a shame/honor culture (Hwang 2018, 224-242). Her scenario provides common ground for the target audience of this project. Families impacted by Tourette

Syndrome report significant family stress and ongoing relational tension.

The participants were educated in a method of Scripture meditation involving concentration, mindfulness, and contemplation. It was not an analytical reading of the Bible but an experiential engagement with the text. The intent was to enable the women to have a personal encounter with the loving presence of

Jesus. Readings included placing one’s name in the narrative of the biblical story, imagining yourself being there or rereading a short portion of Scripture multiple times. Participants examined their own responses while in these meditative moments. In a similar manner to the Civil Rights demonstrators, they brought their children before the Lord and processed their feelings. Increasingly, the mothers were able to conform their live reactions toward their children into attitudes they had cultivated during the meditation. The women followed the

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meditative protocols for eight weeks and then reported their experience through surveys and interviews (Hwang 2018, 224-242).

Campolo and Darling call this form of meditation, “becoming God’s friend.”

Through meditative Scripture reading called Lectio Divina or “Divine reading” the person seeks an experiential encounter with Jesus through listening. They suggest God’s constant love and availability supersedes human relationships.

Nourishing intimacy with Jesus is naturally transforming. Cultivating extended seasons of silence, listening and simply abiding in God’s love is the essence of contemplative Christian practice (Campolo and Darling 2007, 116).

Mindfulness or “mindful awareness” in Hwang’s chosen parlance, is described as a “deep awareness of each present moment in life” (Hwang 2018,

224-242). The meditation sessions were portrayed as “momentary intervention”

(Hwang 2018, 224-242). This methodology intersects with Campolo and

Christian contemplative authors who suggest meditation as an intercessory strategy for persons in stressful or triggering situations (Campolo and Darling

2007, 116). It speaks to the present project for the same reason. A de-escalation plan is critical for Tourette Syndrome patients and their families who are seeking equanimity.

Hwang’s investigation yielded impressive results. After only eight weeks of

Christian meditation mothers reported increased empathy for their teenaged children. They also expressed a greater sense of clarity about themselves and their lives, declining anxiety, and a new ability to accept children as they are.

Many disclosed intently personal spiritual encounters that culminated in authentic

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transformation (Hwang 2018, 224-242). Through Christian meditation or

Christfulness, stress filled individuals and families acknowledge changes which produce positive outcomes.

Conclusion

The consensus of these studies reveals that Tourette Syndrome patients benefit from meditation practices. Quality of life is improved through tic reduction and an overall elevation of the person’s sense of well-being. Depression, anxiety and anger due to the social stigma and activity reducing effects of Tourette

Syndrome are addressed through these methods. A greater capacity to be primed to face situations that could trigger or exacerbate tics is gained (Larrivee and Echarte 2017, 960-978)

Civil Rights activists, religious leaders, Christian authors, and Tourette

Syndrome researchers have all noted the connection between meditation and increased capacity to deal with difficulties and improve a person’s overall quality of life. Whether one is facing angry crowds, stressful situations, inner turmoil or dealing with a chronic disorder-meditative prayer can enhance the capacity for thriving (Campolo and Darling 2007, 161). It can be employed as a preemptive strategy or for finding peace in the midst of a “brainstorm.”

Increasingly, studies reveal the unique contribution being made by the

Christian form of meditation. Tony Campolo quotes his personal spiritual director,

Tom Ball’s description of Christian meditative practice:

Centering prayer starts and ends with prayer to Jesus, asking for his presence, his angels to fill the room, his protection. It is surrender to Jesus, being filled with Jesus, that we seek. There is a big difference

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between seeking emptiness and nothingness and seeking to be with Jesus (Campolo and Darling 2007, 140).

Ball concludes that Christians are obeying the command of Psalm 46:10 to “be still and know that I am God.” He does not think Christians need be concerned with the purpose of others but only what is intended by Scripture and the

Christian faith (Campolo and Darling 2007, 140).

Richard Foster teaches that, for the Christian, meditation is filling the mind with the realities of Christ, his Word and his world. He posits that centering prayer enables one to discover a place of silence where the fragmented thoughts and experiences of the day can be gathered. It opens a space where Christ comes in and gives his peace (Foster 1978, 18). The peace Foster speaks of is what Tourette Syndrome sufferers desperately need during an explosion of tics, emotions, and impulsive thoughts.

In the following chapter, we will discuss the design and method used in our survey assessment of the resource on spiritual exercises. The three aspects of the resource are an animated video, a written question and answer guide, and a guided meditation. Each piece of the instrument will be defined and the process for progressing through the material will be explained.

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CHAPTER FOUR

DESIGN, PROCEDURE AND ASSESSMENT

The purpose of this project was to create a resource on spiritual exercises that will provide support for families participating in the Pennsylvania Tourette

Syndrome Alliance. The research question was: In what ways does this resource on spiritual exercises provide support for families participating in the

Pennsylvania Tourette Syndrome Alliance? Tourette Syndrome is an inherited, neurological disorder characterized by tics – involuntary, sudden movements, or vocalizations that occur repeatedly. There are as many as twelve identified comorbid conditions associated with Tourette Syndrome. These Other Health

Impairments (OHI) include ADD, OCD, ADHD, sensory issues and more.

The goals of the project were as follows:

1. The resource will provide helpful information on some of the interpersonal challenges a person diagnosed with Tourette Syndrome will face.

2. The resource will provide helpful information on some of the interpersonal challenges the family of a person diagnosed with Tourette Syndrome will face.

3. The resource will provide tools to assist the person with Tourette Syndrome to express to their family what they experience.

4. The resource will offer a practical guideline for how to increase positive communication within the family that has a member with Tourette Syndrome.

5. The resource will give practical steps for responding to a tic episode through the use of spiritual exercises for individuals living with Tourette Syndrome.

6. The resource will illustrate how families may provide emotional support for the

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person living with Tourette Syndrome.

7. The resource will provide a helpful “preparation for the day” spiritual exercise strategy for a person with Tourette Syndrome.

8. The resource will provide a positive “end of the day” spiritual exercise response strategy for a person with Tourette Syndrome.

9. The resource will demonstrate how to pursue a connection with God through prayer for the family where a member is living with Tourette Syndrome.

Context

The research method was having the resource evaluated by a panel of eighteen experts. The panel was made up of parents of children with Tourette

Syndrome, educators, advocates, counselors, and religious leaders. One diagnosed with Tourette Syndrome also reviewed the resource. They were able to access and test the resource through the internet. Links were provided by email, including a link to the assessment tool which was completed and submitted online.

The thrust of this enterprise was to create a resource modeling meditation and mindfulness practices for families participating in the Pennsylvania Tourette

Syndrome Alliance or PATSA. The PA Tourette Syndrome Alliance is a non-profit organization that promotes awareness and acceptance, provides education, and assists families, schools and communities while advocating for individuals with

Tourette Syndrome. The majority of participants are school-aged individuals and their families.

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Our family participated as active members of PATSA for a decade and have since led seminars and workshops for the organization. We are intimately acquainted with the expressed needs of the families connected to PATSA. A primary concern is finding tools and strategies for addressing the daily struggles of tics, stress, anger, and other challenges associated with Tourette Syndrome.

A child diagnosed with Tourette Syndrome often puts a tremendous strain on the entire family. Parents are desperate for ways to help their child cope, bring a sense of equilibrium to the household and provide support that leads to success for their child. Education, strategies for communication, and dealing with emotional fallout of the tics and other associated disorders of Tourette

Syndrome is paramount.

Most families come to PATSA shortly after a child is diagnosed with

Recent studies, as detailed earlier in this document, have demonstrated the efficacy of mindfulness and meditation techniques as a response to Tourette

Syndrome. PATSA and many schools where students associated with PATSA attend promote the use of mindfulness practices for de-escalation or responding to stressful situations. However, tools for training and guiding people through meditation are limited. This resource proposed to be intentional about teaching, modeling, and providing actual meditation and mindfulness exercises.

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The goal was to put tools into the hands of the individuals with Tourette

Syndrome and their families. It also fills a void by being uniquely Christian in its approach. All techniques observed in the current setting by the author have been of Buddhist or secular origin. The resource is rooted in biblical, historical, and contemporary Christian practices of meditative prayer and mindfulness.

Participants

The participants in the project were a panel of eighteen experts who evaluated the resource. The appraisers consisted of parents of children with

Tourette Syndrome, advocates, educators, religious leaders, counselors and one individual diagnosed with Tourette Syndrome. They were invited to participate because of their personal connection to a person with Tourette Syndrome, their education, experience, or interest in caring for people with Tourette Syndrome.

Of those who responded, six reviewers were invited by the author. Nine were asked by a special education teacher, two by a Tourette Syndrome advocate, and one by a case worker. Thirty-six persons were welcomed to evaluate the resource. A total of eighteen chose to respond. Of eighteen who completed the survey, sixteen were female.

Respondents were asked their level of education. Six categories of education were provided. These included, primary, secondary, some college, college graduate, graduate or professional degree and doctorate. Fourteen were college graduates and eight had graduate or professional degrees. Three had attended college without procuring a degree and one was a high school graduate.

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The participants were also requested to identify how they were associated with Tourette Syndrome. Educators accounted for eight of the respondents.

Three were medical or mental health workers, two were counselors, two were pastors and two were Tourette Syndrome advocates. Three parents of diagnosed individuals and one diagnosed person completed the assessment tool. Three persons identified with two category choices.

The survey asked how long the reviewers had been associated with

Tourette Syndrome. Three of the evaluators had experience with Tourette

Syndrome for more than fifteen years. Six participants had personal contact with the disorder for over eleven years and made up the largest contingent in this category. Three of the respondents had 2-5 years’ experience and three had less than two years connection to the disorder.

The final demographic question asked if participants engaged in any personal prayer or meditation. No description or frequency of their practice was requested. Sixteen persons who submitted a critique practiced some form of prayer or meditation in their personal lives.

I met with my Field Consultant, demonstrated one video, and explained the purpose and process of using the curriculum. I scheduled a meeting with him to review the results of the survey and its place in my dissertation. I provided my

Field Consultant with a copy of the assessment tool and results.

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Procedure and Assessment

The resource developed had three major components. The first was a series of five animated videos based on the daily experiences of a boy living with Tourette Syndrome. The foundation for these portrayals came directly from the real-life stories of our son and our family. Anecdotes from our lives were adapted for the video transcripts. Additionally, research and reading on the topic of Tourette Syndrome, training we received as parents and advocates, strategies we developed in our journey with Tourette Syndrome, and the input of professionals in the field were grafted into the educational and communication strategies modeled in the video.

The animated videos are three to five minutes long and dramatize a particular challenge for a person living with Tourette Syndrome. By following the daily life of a boy named Jesse, the viewers encounter various scenarios common to Tourette Syndrome. Educational information, response strategies, feelings and difficulties are enacted through the videos. Common vocabulary words associated with Tourette Syndrome are defined. Each video is intended to be viewed by the diagnosed individual, their family, a school or church class or other social groups. It is designed as a community activity.

The first video is entitled “Tic Explosion” and recounts how stressful situations can cause an outburst of tics for a person with the disorder. It reviews how this impacts the individual and those around him or her. Strategies for handling tic explosions are discussed.

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The second video is called “Perception.” It deals with the way Tourette

Syndrome students see the world differently. Suggestions for creating understanding and empathy from teachers and peers are included.

“Accommodations” is the third video. It explains why people with Tourette

Syndrome require special help to make it through a school day. It seeks to mitigate embarrassment and foster acceptance and understanding.

The fourth video is titled “Sensory Issues.” Senses are defined and relatable examples of overstimulation of senses are offered. Techniques for alleviating the difficulty produced by sensory issues are proffered.

The final video is called “Ticcing in Public” and tackles the social issues surrounding this phenomenon. It provides scenarios to help peers and others understand the struggle. The video demonstrates strategies for navigating common and difficult situations produced by the public display of tics.

The animation for the videos was created by the author’s daughter, Jael

Beers. She used VideoScribe computer software by Sparkol to develop the visual aspect of the story. The narration was provided by Jesse Beers, the boy featured in the videos. He tells the firsthand accounts of his own journey. All recording and production were done by the author and his family.

The second piece is an eight-page Q & A discussion guide developed to educate, facilitate communication, and encourage empathy. The facilitator leads the conversation and is provided the questions, answers (where appropriate) and additional prompts and explanations. Some questions are specific and relate to the characters and events in the story. This provides a non-threatening, positive

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and factual way to begin the conversation. Questions then probe deeper into the feelings and experiences of the individuals watching the video. The leader is given direction on how to elicit deeper level communication from the group.

These questions were drawn from what occurs in the animated video. This provides a format for safe and open dialogue. Drawing on my own educational background, experience as the parent of a child with Tourette Syndrome, teaching and leading of Tourette Syndrome workshops and seminars, and thirty- plus years of pastoral ministry, the questions were written to evoke sharing of feelings, thoughts, motives, needs and hopes. An instruction guide, video scripts and additional information was included to guide viewers and leaders as to the purpose and use of the material.

These spiritual exercises are drawn from the author’s Master’s in Spiritual

Formation and Leadership and doctoral studies. They are rooted in Scripture,

Christian historical and contemporary practice, and the author’s own spiritual disciplines. They were recorded and produced by the author.

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An assessment tool was developed to garner responses from a panel of experts concerning their evaluation of the resource. Corrections and improvements were made under the guidance of Ashland Theological Seminary faculty. The survey included twenty-seven statements designed to elicit quantitative responses and three open-ended qualitative questions. The qualitative questions asked the experts what they found help in the resource if they were to encounter a person with Tourette Syndrome. They were also asked if they benefited from meditative prayer in their spiritual journey and how they could envision the resource being used. The Assessment Tool is found in

Appendix Two on page 197.

An email introducing the survey was sent to all participants. The approved tool was placed in Google Forms and made accessible to the panel of experts through an email link. Each reviewer was given access to the YouTube account of Disabled by Love. Disabled by Love or DBL is a non-profit formed by the author’s family to serve individuals and families touched by Tourette Syndrome.

The questions for discussion were sent as an attachment to the email. A second attachment gave further instructions, provided written video transcripts, descriptions of the method and motive for each meditation and additional explanatory material.

The evaluators received the survey on September 30, 2019 and were asked to view the videos and meditations and complete the companion survey and questions by October 10, 2019. The survey was designed on a Likert seven- point scale. As responses were received, Google Forms collated the information

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and created pie charts for the demographic information and graphs detailing the quantitative responses. Each response to the qualitative questions was listed under the proper question.

Assessment

The assessment tool contained both quantitative and qualitative elements.

The quantitative portion was designed on a Likert seven-point rating scale. There were twenty-seven statements presented. Each statement had seven possible choices. The selections were ranked from seven to one and listed as: Strongly agree, moderately agree, slightly agree, neutral, slightly disagree, moderately disagree or strongly disagree. Respondents simply clicked on a circle under the number with the corresponding description that they chose for each statement.

The twenty-seven statements in the quantitative section were based on the nine goals established for the resource. The declared intent of these goals was to provide education on Tourette Syndrome, enhance communication among families and in classrooms affected by Tourette Syndrome, and cultivate empathy for and in the diagnosed individual. Meditation and Christfulness practices were provided as a way to respond to the challenges of living with

Tourette Syndrome. Reviewers were asked to rate the effectiveness of the resource in meeting these goals. The inquiries were specific and intentionally limited in scope to garner clear and measurable assessments.

The qualitative portion of the tool asked three open ended questions. The first invited the experts to reflect on their own experience with meditative prayer.

The second requested a personal reaction as to how the resource would aid the

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reviewer in their interactions with a person with Tourette Syndrome. Finally, evaluators were queried about how they would envision the resource being used.

Each of these qualitative questions invited the analyst to expand upon their answer with a description or an explanation. The complete assessment tool is included in the appendix to this dissertation.

Analysis of the quantitative critiques identified both patterns and anomalies in the responses. Statistical graphs demonstrated the weight given to each statement. A numerical breakdown was calculated for every statement.

Ratings were compared based on the demographic information provided; particularly for how the reviewers were associated with Tourette Syndrome, how much experience they had with the disability and their level of education. The impact of their personal practice of meditative prayer was also considered in the breakdown.

The qualitative questions provided an opportunity to identify common experiences of the assessors. Strengths of the resource were articulated in numerous reviews. These more open-ended inquiries elicited valuable insights into the impact of the resource. Separate from the official review many of the evaluators asked if they could have access to the videos for personal use. They requested and were granted the right to use them for school classrooms, teacher training, churches, and family situations.

The data gathered from the assessment tool will be reported in Chapter

Five. Results of the expert evaluation of the twenty-seven statements will be calculated and put into nine tables representing the nine stated goals. A tenth

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table will demonstrate the composite score for all goals. The answers to the three qualitative questions will be collated, analyzed, and reported.

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CHAPTER FIVE

REPORTING THE RESULTS

The purpose of this project was to create a resource on spiritual exercises that will provide support for families participating in the Pennsylvania Tourette

Syndrome Alliance. The research question was: In what ways does this resource on spiritual exercises provide support for families participating in the

Pennsylvania Tourette Syndrome Alliance?

Overview

The assessment tool was discussed in Chapter Four. The survey was an instrument designed to measure whether the project goals and research question were achieved. Twenty-seven quantitative statements were given to glean opinions about the success of the resource in meeting the goals. Three open- ended questions were provided to allow respondents to offer qualitative responses.

The assessment tool contained both quantitative and qualitative elements. The quantitative portion was designed on a Likert seven-point rating scale. There were twenty-seven statements presented. Each statement had seven possible choices. The selections were ranked from 1 to 7 and listed as: 1 =

Strongly disagree, 2 = moderately disagree, 3 = slightly disagree, 4 = neither agree nor disagree, 5 = slightly agree, 6 = moderately agree or 7 = strongly agree.

The assessment tool results will be reported in this chapter. The highest rated quantitative goal will be discussed first, followed by the remaining eight

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goals in descending order of their average score. A final composite score of all nine goals will be noted. Finally, the qualitative answers will be examined.

Goal #1: Interpersonal Challenges of Person with Tourette Syndrome

Goal One was the most prominent goal in the project. The goal was: “The resource will provide helpful information on some of the interpersonal challenges a person diagnosed with Tourette syndrome will face.” It ranked highest out of the nine goals with a composite score of 6.79 out of seven possible points. The

Likert Scale statements used to evaluate this goal were: 13) The resource educates on the challenges of a person with Tourette Syndrome attending public events; question 5) The resource shows how authorities may misread Tourette

Syndrome as intentionally disruptive behavior; and 26) The resource provides information on how people may react negatively toward tics. A Likert Scale rating ranging from 1 = strongly disagree to 7 = strongly agree was used.

Table #1. Goal 1. Interpersonal Challenges of person diagnosed with Tourette Syndrome

Question Average Responses 13.) The resource educates on the challenges of a person with TS attending public events. 6.83 18

5.) The resource shows how authorities may misread TS as intentionally disruptive behavior. 6.77 18

26.) The resource provides information on how people may react negatively toward tics. 6.77 18 ______Composite 6.79 N=18____ Likert Scale: 1 = strongly disagree; 2 = moderately disagree; 3 = slightly disagree; 4 = neither agree nor disagree; 5 = slightly agree; 6 = moderately agree; 7 = strongly agree

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Statement thirteen indicated the resource provided training on the challenges a person with Tourette Syndrome experiences in public settings. The average score of 6.83 was rated the highest for any statement in the entire survey. Fifteen participants strongly agreed and three moderately agree. In their qualitative answers two reviewers admitted the material inspired them to take a less judgmental attitude toward those with Tourette Syndrome and five others acknowledged gaining greater understanding.

Statement five affirmed the resource shows how authorities may misunderstand the tics and other conditions of people with Tourette Syndrome.

Statement five had a 6.77 average score. Fifteen participants strongly agreed with the statement. Two panelists moderately agreed, and one slightly agreed.

Two special education teachers noted in their qualitative responses that occasionally general education teachers do not recognize the authentic nature of the struggle a student with Tourette Syndrome is experiencing.

Statement twenty-six had an average rating of 6.77. Fifteen participants strongly agreed with the statement. Two panelists moderately agreed, and one slightly agree. In the qualitative responses, four reviewers commented on the need for greater awareness and understanding of tics.

Goal #7: A “Preparation for the day” Spiritual Exercise

Goal Seven tied for the second most prominent goal in the project. The goal was: “The resource will provide a helpful “preparation for the day” spiritual exercise for a person with Tourette Syndrome.” The average score for the goal was 6.70. The statements used to evaluate this goal were: 16) The resource

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offers meditative prayer as a tool for beginning the day; 22) The resource provides spiritual exercises to prepare for the day; and 10) The resource teaches a Psalm 23 meditation as a positive way to begin the day.

A Likert Scale rating ranging from 1 = strongly disagree to 7 = strongly agree was used.

Table #2. Goal 7. Preparation for the day spiritual exercise for person with Tourette syndrome ______Question Average Responses 16.) The resource offers meditative prayer as a tool for beginning the day. 6.72 18

22.) The resource provides spiritual exercises to prepare for the day. 6.72 18

10.) The resource teaches a Psalm 23 meditation as a positive way to begin the day. 6.66 18 ______Composite 6.70 N=18 Likert Scale: 1 = strongly disagree; 2 = moderately disagree; 3 = slightly disagree; 4 = neither agree nor disagree; 5 = slightly agree; 6 = moderately agree; 7 = strongly agree

Statement sixteen said the resource was effective in offering a meditative tool to begin the day. The average score for statement sixteen was 6.72.

Fourteen participates strongly agreed with the statement, three moderately agreed and one slightly agreed. Five commented in their quantitative response that meditative prayer clears distractions and one person said, “It allows my day to start off on the right foot.”

Statement twenty-two was the resource provides spiritual exercises to prepare for the day. A rating of 6.72 was given for statement twenty-two. Thirteen participants strongly agreed with the statement and five moderately agreed. One

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expert noted in their qualitative answer that through meditation they had a, “More focused and centered day.”

Statement ten measured the effectiveness of Psalm 23 as a positive way to begin the day. It scored a 6.66 average. Thirteen participants strongly agreed with the statement. Four panelists moderately agreed, and one slightly agreed.

One expert wrote in their qualitative answer, “It allows me to have a clear mind when I come across a difficult situation in my day, a perspective I would not have if I had not started my day with a focus on God,” concluded one expert.

Goal #9: Pursuing Connection with God through Prayer

Goal Nine tied for the second most prominent goal in the project. The goal was: “The resource will demonstrate how to pursue a connection with God through prayer for the family where a member is living with Tourette

Syndrome.” The average score for the goal was 6.70. The standards used to evaluate this goal were: 8) The resource models how to pursue a connection with God through prayer exercises; 19) The resource demonstrated a useful paradigm for communicating with God; and 4) The resource showed how to use meditative prayer to connect with God. A Likert Scale rating ranging from

1 = strongly disagree to 7 = strongly agree was used.

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Table #3. Goal 9. Pursuing a connection with God through prayer for Tourette Syndrome family ______Question Average Responses 8.) The resource models how to pursue a connection with God through prayer exercises. 6.72 18

19.) The resource demonstrated a useful paradigm for communicating with God. 6.72 18

4.) The resource showed how to use meditative prayer to connect with God. 6.66 18 ______Composite 6.70 N=18 Likert Scale: 1 = strongly disagree; 2 = moderately disagree; 3 = slightly disagree; 4 = neither agree nor disagree; 5 = slightly agree; 6 = moderately agree; 7 = strongly agree

Statement eight said that the source modeled a path to connection with

God through spiritual disciplines. The statement received an average rating of

6.72. Fourteen participants strongly agreed with the statement. Three panelists moderately agreed, and one slightly agreed. In response to the qualitative questions, three experts wrote of the calming effect of the practice. One reviewer disclosed, “A feeling of closeness with our Lord.”

The resource was a useful paradigm for communicating with God. Experts combined to establish 6.72 average for statement nineteen. Thirteen participants strongly agreed with the statement and five moderately agreed. Through their quantitative answers, five participants affirmed the utility of the resource for communicating with God. One stated they were, “Able to sit quietly and so seek the Lord.”

Meditative prayer offered a way to interact with God. Statement four achieved a 6.66 average score. Thirteen participants strongly agreed with the

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statement, four moderately agreed, and one slightly agreed. This endorsement was submitted by one expert in the qualitative response section, “Quieting your soul allows you not only to experience God’s presence and His goodness, but also hear from Him with greater clarity.”

Goal #8: End of Day Spiritual Exercise for Person with Tourette Syndrome

Goal Eight was the fourth most prominent goal. The goal was: “The resource will provide a positive ‘end of the day’ spiritual exercise response strategy for a person with Tourette syndrome.” The average score for statement seven was 6.77. The standards used to evaluate this goal were: 7) The resource demonstrated the Prayer of Examen as a helpful way to end the day; 20) The resource taught meditative prayer as a meaningful way to reflect upon the day; and 25) The resource showed how to gratefully review the events of the day as a positive prayer exercise. A Likert Scale rating ranging from 1 = strongly disagree to 7 = strongly agree was used.

Table #4. Goal 8. End of day spiritual exercise for person with Tourette Syndrome ______Question Average Responses 7.) The resource demonstrated the Prayer of Examen as a helpful way to end the day. 6.77 18

20.) The resource taught meditative prayer as a meaningful way to reflect upon the day. 6.77 18

25.) The resource showed how to gratefully review the events of the day as a positive prayer exercise. 6.50 18 ______Composite 6.68 N=18 Likert Scale: 1 = strongly disagree; 2 = moderately disagree; 3 = slightly disagree; 4 = neither agree nor disagree; 5 = slightly agree; 6 = moderately agree; 7 = strongly agree

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The panel rated the Prayer of Examen as a helpful way to end the day.

The average score for statement seven was 6.77. Fifteen participants strongly agreed with the statement, two moderately agreed and one slightly agreed. After being introduced to the practice, one reviewer told the author that they began daily using the Prayer of Examen with their family.

Meditative prayer was deemed to be a meaningful way to reflect on the day. A scoring average of 6.77 was logged for statement twenty. Fifteen participants strongly agreed with the statement. Two panelists moderately agreed, and one slightly agree. In the qualitative responses, one member of the panel declared, “I use meditation as a way to refocus myself after a long, stressful day. It helps me put my life back into perspective and give my energy to my family in an appropriate way.”

Statement twenty-five scored an average of 6.50. It measured whether gratefully reviewing the events of the day was a positive prayer exercise.

Thirteen participants strongly agreed with the statement. Two panelists moderately agree, two slightly agreed and one neither agreed nor disagreed.

This statement recorded the lowest value for statements under Goal Eight.

Goal #2: Interpersonal Challenges of the Family

Goal Two was the fifth most prominent goal. The goal was: “The resource will provide helpful information on some of the interpersonal challenges the family of a person diagnosed with Tourette Syndrome will face.” The average score for the goal was 6.62. The standards used to evaluate this goal were: 12) The resource taught how Tourette syndrome anger issues can impact the family

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dynamic; 3) The resource modeled “escape word” as an effective way to provide reassurance; and 18) The resource showed how the family may face rejection in the public arena. A Likert Scale rating ranging from 1 = strongly disagree to 7 = strongly agree was used.

Table #5. Goal 2. Interpersonal challenges the family of a person diagnosed with Tourette Syndrome ______Question Average Responses 12.) The resource taught how TS anger issues can impact the family dynamic. 6.77 18

3.) The resource modeled “escape word” as an effective way to provide reassurance. 6.66 18

18.) The resource showed how the family may face rejection in the public arena. 6.44 18 ______Composite 6.62 N=18 Likert Scale: 1 = strongly disagree; 2 = moderately disagree; 3 = slightly disagree; 4 = neither agree nor disagree; 5 = slightly agree; 6 = moderately agree; 7 = strongly agree

The resource revealed how Tourette Syndrome anger issues can impact a family. Statement twelve was given an average of 6.77. Fifteen participants strongly agreed with the statement, two moderately agreed, and one slightly agreed. In their qualitative responses, four experts commented on the importance of not judging including one who wrote, “It makes me think about not jumping to conclusions about the child being out of control.”

“Escape word” as an effective way to provide reassurance to a child with

Tourette Syndrome was measured by statement three. It received an average score of 6.66. Fourteen participants strongly agreed with the statement, three moderately agreed, and one neither agreed nor disagreed. Escape word is a pre-

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chosen word to use during conflict. It is used if a conversation is escalating into an argument where the person with Tourette Syndrome feels trapped, angry, or misunderstood. They may speak the escape word and immediately exit the situation without reprisal. Fourteen experts strongly agreed “escape word” was a valuable strategy for offering support. In their qualitative response one expert wrote, “I would use some of the language, including “escape word,” to reassure the person that I have some understanding and that they can release some of the pressure they are feeling.”

The statement that families may face rejection in the public arena due to tics is demonstrated in the resource. Statement eighteen garnered an average score of 6.44. Twelve participants strongly agreed with the statement, two moderately agreed, and four slightly agreed. In the qualitative response section, all eighteen reviewers commented on the resource’s usefulness in group settings. Eleven reviewers specifically mentioned school as a viable option for using the material.

Goal #5: Responding to a Tic Episode through Spiritual Exercises

Goal Five was the sixth most prominent goal. The goal was: “The resource will give practical steps for responding to a tic episode through the use of spiritual exercises for individuals living with Tourette Syndrome.” The average score for the goal was 6.53. The standards used to evaluate this goal were: 6) The resource taught the Three R’s prayer as a way to help one deescalate; 23) The resource showed Christfulness meditation as a constructive response to a tic incident; 14) The resource gave a practical response to a tic episode through the

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“palms down, palms up” meditation. A Likert Scale rating ranging from 1 = strongly disagree to 7 = strongly agree was used.

Table #6. Goal 5. Responding to a tic episode through spiritual exercises ______Question Average Responses 6.) The resource taught the Three R’s prayer as a way to help one deescalate. 6.66 18

23.) The resource showed Christfulness meditation as a constructive response to a tic incident. 6.50 18

14.) The resource gave a practical response to a tic episode through the “palms down, palms up” meditation. 6.44 18 ______Composite 6.53 N=18 Likert Scale: 1 = strongly disagree; 2 = moderately disagree; 3 = slightly disagree; 4 = neither agree nor disagree; 5 = slightly agree; 6 = moderately agree; 7 = strongly agree

The Three R’s prayer was graded as a helpful de-escalation strategy. The average rating for statement six was 6.66. Thirteen participants strongly agreed with the statement, four moderately agreed, and one slightly agreed. In their qualitative responses, seven experts noted meditation as a good way to wind down.

Christfulness meditation was deemed a constructive response to a tic incident in statement twenty-three. The statement received an average rating of

6.50. Thirteen participants strongly agreed with the statement. Three panelists moderately agreed, one slightly agreed, and one slightly disagreed. One panelist shared, in their qualitative response, that meditation is, “A way to refocus…after a long and stressful day.”

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Statement fourteen received a 6.44 average rating. The “palms down, palms up” meditation is a practical way to respond to a tic episode. Thirteen participants strongly agreed with the statement. Two panelists moderately agreed, one slightly agreed and two neither agreed nor disagreed. In their qualitative responses, eleven reviewers spoke of the calming effect of centering prayer.

Goal #4: Increasing Positive Communication within the Family

Goal Four was the seventh most prominent goal. The goal was: “The resource will offer a practical guideline for how to increase positive communication within the family that has a member with Tourette Syndrome.”

The average score for the goal was 6.51. The Likert Scale statements used to evaluate this goal were: 15) The resource gives a template for having positive family communication; 24) The resources provides direction for how to have a constructive family talk; and 2) The resource offers questions to stimulate family conversation. A Likert Scale rating ranging from 1 = strongly disagree to 7 = strongly agree was used.

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Table #7. Goal 4. Increasing positive communication within the family that has a member with Tourette Syndrome ______Question Average Responses 15.) The resource gives a template for having positive family communication. 6.66 18

24.) The resources provide direction for how to have a constructive family talk. 6.50 18

2.) The resource offers questions to stimulate family conversation. 6.38 18 ______Composite 6.51 N=18 Likert Scale: 1 = strongly disagree; 2 = moderately disagree; 3 = slightly disagree; 4 = neither agree nor disagree; 5 = slightly agree; 6 = moderately agree; 7 = strongly agree

Statement fifteen received an average score of 6.66. The resource gives a template for having positive family communication. Fourteen participants strongly agreed with the statement, two moderately agreed, and two slightly agreed.

Qualitative responses revealed five reviewers recognized the effective method of stimulating helpful family interaction provided by the resource. This is evidenced through expert qualitative responses including one who said it is useful, “For parents and families to better understand Tourette Syndrome and to prompt discussion and openness with their child who is diagnosed.”

Statement twenty-four scored a 6.50 average. Direction is provided for how to have constructive family talk. Twelve participants strongly agreed with the statement. Five panelists moderately agreed, and one slightly disagreed. In the qualitative responses, five examiners noted the resource directs families how to communicate productively. “Families can use this in their home and give it to

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relatives and friends so that they can better understand Tourette Syndrome,” encouraged one reviewer.

Statement two received an average rating of 6.38. The resource provides questions to stimulate family conversation. Twelve participants strongly agreed with the statement. Two panelists moderately agreed, three slightly agreed, and one neither agreed nor disagreed. In their qualitative responses, five experts affirmed positive family communication is spurred by the resource. All eighteen evaluators named at least one place the resource could be used, including in the home.

Goal #3: Assisting the Person with Tourette Syndrome to Express Feelings

Goal Three was the eighth most prominent goal. The goal was: “The resource will provide tools to assist the person with Tourette Syndrome to express to their family what they experience.” The average score for the goal was 6.44. The standards used to evaluate this goal were: 9) The resource provides prompts to help the person with Tourette Syndrome share their feelings;

27) The resources provides direction for how to have a constructive family talk; and 21) The resource offers questions to stimulate family conversation. A Likert

Scale rating ranging from 1 = strongly disagree to 7 = strongly agree was used.

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Table #8. Goal 3. Assisting the person with Tourette Syndrome to express feelings to their family ______Question Average Responses 9.) The resource provides prompts to help the person with TS share their feelings. 6.55 18

27.) The resource provides tools for having a family discussion about what it’s like to have TS. 6.50 18

21.) The resource provides questions for the family to ask the diagnosed person. 6.27 18 ______Composite 6.44 N=18 Likert Scale: 1 = strongly disagree; 2 = moderately disagree; 3 = slightly disagree; 4 = neither agree nor disagree; 5 = slightly agree; 6 = moderately agree; 7 = strongly agree

Statement nine garnered an average rating of 6.55. The resource provides prompts to help the person with Tourette Syndrome share their feelings. Thirteen participants strongly agreed with the statement, three moderately agreed, one slightly agreed, and one neither agreed nor disagreed. Qualitative responses included two reviewers who wrote of learning to listen without judgment.

Tools were provided for a family discussion about what it is like to have

Tourette Syndrome. An average mark of 6.50 was accumulated for statement twenty-seven. Thirteen participants strongly agreed with the statement. Three reviewers moderately agreed, one slightly agreed, and one slightly disagreed. In their qualitative responses, five experts intimated that understanding was increased through feeling centered conversations.

The resource provided questions for the family to ask the person with

Tourette syndrome. Statement twenty-one accrued a 6.27 average score. Twelve participants strongly agreed with the statement. One panelist moderately agreed,

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three slightly agreed, and two neither agreed nor disagreed. Through their qualitative response, one panelist said it was useful to produce, “Understanding and create empathy from the client perspective.”

Goal #6: How Families may Provide Emotional Support

Goal Six was the eighth most prominent goal. The goal was: “The resource will illustrate how families may provide emotional support for the person living with Tourette Syndrome.” The average score for the goal was 6.43. The standards used to evaluate this goal were: 17) The resource demonstrated providing the opportunity to unwind as a positive way to offer assistance; 1) The resource gave information on how family members may have to agree to different rules for the child with Tourette Syndrome; and 11) The resource illustrated how listening without judgment gives emotional support. A Likert Scale rating ranging from 1 = strongly disagree to 7 = strongly agree was used.

Table #9. Goal 6. How families may provide emotional support for the person living with Tourette Syndrome ______Question Average Responses 17.) The resource demonstrated providing the opportunity to unwind as a positive way to offer assistance. 6.72 18

1.) The resource gave information on how family members may have to agree to different rules for the child with TS. 6.33 18

11.) The resource illustrated how listening without judgment gives emotional support. 6.26 18 ______Composite 6.43 N=18 Likert Scale: 1 = strongly disagree; 2 = moderately disagree; 3 = slightly disagree; 4 = neither agree nor disagree; 5 = slightly agree; 6 = moderately agree; 7 = strongly agree

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An average of 6.72 was amassed by question seventeen. The resource provided the opportunity to unwind as a useful way to offer support. Thirteen participants strongly agreed with the statement and five moderately agreed.

Qualitative responses included four experts who mentioned using the material in support groups

Statement one scored an average rating of 6.33. Having information about different rules for the diagnosed child was offered by the resource. Eleven participants strongly agreed with the statement. Four reviewers moderately agreed, one slightly agreed, and two neither agreed nor disagreed. One expert, who has Tourette Syndrome, noted in his qualitative response, that offering accommodations are vital for the child.

Statement eleven said the resource illustrated how listing without judgment gives emotional support. It received the lowest average of the survey with a score of 6.26. Fourteen experts strongly agreed. Two panelists moderately agreed, one slightly agreed, and one neither agreed nor disagreed.

Composite Score for All Nine Goals

The research question was: In what ways does this resource on spiritual exercises provide support for families participating in the Pennsylvania Tourette

Syndrome Alliance? The quantitative responses of the panel of experts produced a total average score for the twenty-seven assessment questions of 6.6 on a seven-point Likert Scale (Table 10). All but two of the goals were rated above the midway point between moderately agree and strongly agree.

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Table 10. Composite Scores for all Goals

Goal No. Name Average ______

1 Interpersonal Challenges of Person with Tourette Syndrome 6.79

2 Interpersonal Challenges of the Family 6.62

3 Assisting the Person with Tourette Syndrome to Express Feelings 6.44

4 Increasing Positive Communication within the Family 6.51

5 Responding to a Tic Episode through Spiritual Exercises 6.53

6 How Families may Provide Emotional Support 6.43

7 A “Preparation for the day” Spiritual Exercise 6.70

8 End of Day Spiritual Exercise for Person with Tourette Syndrome 6.68

9 Pursuing Connection with God through Prayer 6.70 ______Average Composite Score 6.60

The composite score for the quantitative statements reveals an overall positive response toward the resource. The nine goals were divided between statements about spiritual exercises (Goals 5, 7, 8 and 9), communication strategies (Goals 3, 4 and 6), and common challenges a person with Tourette

Syndrome encounters in their life (Goals 1, 2). The highest rated goal was about the interpersonal challenges of a person living with Tourette Syndrome. The next three most favorable responses were given to statements about spiritual exercises. Responses to the three open-ended questions in the qualitative analysis will enable more specific analysis of the ratings.

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Qualitative Analysis

Each respondent received three open-ended questions listed at the end of the survey. These questions were primarily designed to provide additional information about the opinions the panel of experts have regarding the resource.

They were requested to describe or explain their answers.

In the first question, each respondent was asked “what benefits have you experienced from meditative prayer in your spiritual journey?” In the second question, each respondent was asked “what would you draw on from this resource to help you if you encountered a person with Tourette Syndrome?” In the third question, each respondent was asked how they would envision the resource being used.

Benefits from Meditative Prayer in your Spiritual Journey

Respondents were asked, “What benefits have you experienced from meditative prayer in your spiritual journey?” They were requested to describe these benefits. Seventeen out of eighteen respondents reported an answer to this question while one said it was not applicable to their experience.

Six out of eighteen respondents noted that stress reduction was the primary benefit they received from meditative prayer. One out of eighteen panel members specifically identified the "palms down, palms up" exercise as helpful.

The words “peace” and “calm” emerged in six out of the eighteen responses.

Five out of eighteen expert panel members recognized an ability to relax as they meditated. Four out of eighteen expert panel members spoke of increased self- worth and personal affirmation being a by-product of releasing stress.

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Seven out of eighteen experts wrote about a personal connection with

God through meditative prayer. “Connecting with God calms my fears and comforts me,” reported one reviewer. Three out of eighteen reviewers suggested they could hear from God, as one put it, “with greater clarity.”

Help when Encountering a Person with Tourette Syndrome

The second qualitative question was, “What would you draw on from this resource to help you if you encountered a person with Tourette Syndrome?

Eleven out of eighteen respondents mention the twin concepts of understanding and non-judgment. Two out of eighteen experts succinctly stated their take.

“WOW!, Lot’s of empathy and understanding,” wrote one expert.

“Just listen, don’t judge,” said another.

Ten out of eighteen respondents mentioned providing the suggested accommodations. One out of the eighteen reviewers identified as having Tourette

Syndrome. He stated that he wished this kind of material was available when he was diagnosed in 1983 and that providing accommodations is essential. Two special education teachers, who were among the eighteen experts, identified accommodations as a key element in the resource. One out of the eighteen respondents added, “The tools provided are beneficial for students and adults and I will use many pieces from this, thank you.”

Seven out of eighteen experts suggested applying the specific strategies taught in the resource to their educational setting, including one who stated their intent to implement the “escape word” response. The use of “Jesse” as both character and narrator of the videos was mentioned by two out of eighteen

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panelists as a great teaching tool for communicating empathy and understanding.

Where would you Envision the Resource being Used?

Eighteen out of eighteen reviewers said the resource could be used in some form of instructional setting. Three out of eighteen requested permission to begin presenting it in their classrooms or training venues. Two out of eighteen panelists suggested value to the entire disabled community, not just those with

Tourette Syndrome. Four out of eighteen respondents mentioned that understanding of the disability could be enhanced by using the material in a variety of environments.

Thirteen out of eighteen evaluators suggested two or more venues for using the resource while respondents the remaining five out of eighteen named only one. Six out of eighteen experts indicated that families would benefit from the training. Six out of eighteen identified educator training as a potential domain of usage. Nine out of eighteen assessors stated schools could use the material while two out of eighteen suggested the general public as setting.

Four out of eighteen evaluators pointed to peer groups and one out of eighteen specifically mentioned the resource would be suited for their public school Mindfulness Activity Club. Seven out of eighteen experts said church or

Christian camp settings were the proper place to use the curriculum.

Based on the quantitative analysis of the expert’s evaluations, the resource appears to provide an accessible, helpful tool for people living with

Tourette Syndrome. The four highest rated goals and five of the top six all had to

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do with improving the quality of life of the diagnosed individual. Secondarily, evaluators noted that the curriculum held value for the people teaching and supporting members of the Tourette Syndrome community.

The qualitative analysis emphasized the support value of the resource.

The comprehensive list of suggested venues from all eighteen of the respondents included; immediate and extended family settings, teacher training, sports environments, school classrooms, Sunday school, public locations, college courses, camps, and support groups, for the purpose of improved understanding and strategies for people seeking to serve those living with

Tourette Syndrome. The results of the survey demonstrated that a group of experts deemed the resource effective.

Chapter Six will report personal reflections of the study, information gained, applications to ministry and possible further studies on the topic. I will identify my Personal Goals during the project and how they were lived out and experienced. A concluding statement to the study will be offered.

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CHAPTER SIX

SUMMARY AND REFLECTIONS

On a clear, cool winter morning I jumped into my car for a thirty-minute drive to visit a parishioner in a nearby hospital. As was my habit, I switched on

National Public Radio and began listening to an interview. The conversation was with renowned author, James Patterson and his friend Hal Friedman. The program was nearly over so I caught only the last few moments. I remember thinking, “It sounds like they are talking about Tourette Syndrome”.

I listened intently to the dialogue. My young son, Jesse had been diagnosed with Tourette Syndrome almost two years earlier and my wife, Julie and I were desperately seeking guidance on how to meet this challenge. We had been to medical doctors, specialists, a psychiatrist, and several therapists with limited results. We tried medication, dietary changes, and therapeutic suggestions to no avail. Not only were Jesse’s tics growing worse, but the associated conditions such as OCD, ADD, sleep disruption, and more were having a negative impact on every aspect of his life. Our whole family was feeling the weight of the struggle. In the years since, we have listened to numerous other families express these same frustrations.

Patterson and Friedman discussed the odyssey of Friedman’s son, Cory.

They spoke of his deep physical and emotional pain, confusion, a battle with alcohol and the long road to recovery. They detailed his educational, social and employment difficulties. As they described each incident, I became more convinced Cory had Tourette Syndrome. As the interview ended, Friedman

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confirmed my assessment. His son did indeed have a diagnosis of Tourette

Syndrome. With the assistance of James Patterson, he had told their story in a book called, Against Medical Advice. I made a mental note of the title and exited the car for my pastoral call.

Immediately following my visit, I drove to the nearest bookstore. I purchased the book and stopped for lunch. The waitress took my drink order and left. I opened Against Medical Advice and read the introduction. By the time my server returned, tears were running down my face. I awkwardly waved her off and continued reading. The tears continued to flow. For the first time since we heard the diagnosis, “Tourette Syndrome,” I felt like I was encountering someone who understood what it was like. We were not alone. There were others. There was hope.

Our first few years of caring for a son with Tourette Syndrome were made more difficult by the paucity of resources. Over the next decade we connected with people, support groups and particularly, The Pennsylvania Tourette

Syndrome Alliance. We began to learn, to discover practical helps, and develop our own strategies for our family.

This project was born out of the desire to provide others with a resource to assist them in their journey with Tourette Syndrome. Particularly, to come alongside parents, families and diagnosed people with early intervention. It is intended to offer a practical tool for combatting the many challenges associated with this condition. Because we understand the fear and frustration families

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experience and the difficulty of finding accessible support; this project attempts to provide a hopeful practice to compliment other therapeutic techniques.

Additionally, our faith in Christ shaped the strategies we employed and the methodology I developed for this project. Mindfulness and meditation as intervention and de-escalation exercises are prevalent in the current research on

Tourette Syndrome. However, the Tourette Syndrome studies cited in Chapter

Three are all from non-Christian practices or secular exercises rooted in Eastern religious belief systems. This project offers historic Christian approaches to prayer, mindfulness, and meditation as an alternative to other world views.

The study overwhelmingly concluded the resource met its goals. All goals were scored above 6.4 by the panel of eighteen experts. This places them between moderately agree and strongly agree. Three goals received a 6.7 rating or higher. Recognition of the interpersonal challenges of a person living with

Tourette Syndrome received the most support. However, the next three highest scored goals all had to do with the spiritual exercises. The spiritual practices in the resource struck a chord with the evaluators. While the goals that focused on family dynamics were positively rated at above 6.4, they did represent the three lowest scores in the study.

Project Goals

The purpose of this project was to create a resource for spiritual exercises that will provide support for families participating in the Pennsylvania Tourette

Syndrome Alliance. The following list contains the nine goals established for the project. Each goal will be analyzed, beginning with the goal that had the most

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prominent findings, followed by the remainder of the goals in descending order of prominence. The project goals were: