Alfred Molina Interview with Regina Hall P

AN /J EC D OLINA M LFRED Volume 2010-11Volume A $4.99

MAGAZINE VOLUME 2010-11 ALFREDMOLINA DEC/JAN THE VOICE OF OVER 50 MILLION AMERICANS 2 ABILITY

MANAGING EDITOR Gillian Friedman, MD

MANAGING HEALTH EDITOR E. Thomas Chappell, MD

CONTRIBUTING SENATOR U.S. Sen. Tom Harkin (D-IA)

HUMOR WRITERS Jeff Charlebois George Covington, JD Gene Feldman, JD

EDITORS Dahvi Fischer Renne Gardner Regina Hall Stan Hoskins Alfred Molina interview with Regina Hall p. 42 Molly Mackin 6 SENATOR TOM HARKIN — IDEA 35 Years Josh Pate David Radcliff Denise Riccobon, RN 8 ASHLEY’S COLUMN — Girls Ride Jane Wollman Rusoff Maya Sabatello, PhD, JD Romney Snyder 10 ACUPUNCTURE — Ancient Chinese Secret, Revealed! HEALTH EDITORS

Extremity Games Larry Goldstein, MD 12 APHASIA: THE MOVIE — A Film Beyond Words Natalia Ryndin, MD CONTRIBUTING WRITERS Ashley Fiolek LOVE SIMPLE — Lights! Camera!...Lupus? Love Simple p. 16

16 Paralympic Games Beijing Gale Kamen, PhD Laurance Johnston, PhD 18 TRAIL MIX — The Wilderness Made Accessible Andrea Kardonsky Deborah Max Myles Mellor - Crossword Puzzle 21 AMPUTEE RECOVERY — From the Middle East to Haiti Paula Pearlman, JD Allen Rucker Kristen McCarthy Thomas 24 LACHI — A Voice in the Darkness Betsy Valnes WEB EDITOR Malcolm Smith p. 50 26 LAURA HOGIKYAN — The Play’s the Thing Music Within Mary Shafizadeh GRAPHIC ART/ ILLUSTRATION 28 CREATIVE ARTS FESTIVAL — Veterans with Artistic Vision Scott Johnson Melissa Murphy - Medical Illustration

32 A TRIP TO GERMANY — Disability and Deutchland PHOTOGRAPHY Nancy Villere— CrushPhotoStudios.com 37 A DAY IN THE LIFE — Nursing with a Movement Disorder NBC Universal Media

TRANSCRIPTIONIST 42 ALFRED MOLINA — Law & Order and the Injustice of AIDS Prosthetics p. 21 Sandy Grabowski ABILITY’s Crossword Puzzle ABILITY’s

50 MALCOLM SMITH — A Ride Down Memory Lane DIRECTOR OF BUSINESS AFFAIRS Ryan Brown, JD 54 SHAKES — Parkinson’s Disease MARKETING/PROMOTIONS Stan Hoskins 56 VICTORIA TAYLOR — Excerpt From Caitlin’s Wish Andrew Spielberg NEWSSTAND CIRCULATION 60 SALLY FRANZ — Excerpt From Scrambled Leggs Ashley Fiolek p. 8 John Cappello

CONTENTS EDITORIAL 64 CROSSWORD PUZZLE, EVENTS & CONFERENCES ABILITYMAGAZINE.COM [email protected] NON-PROFITS ADVERTISING DISTRIBUTION CORPORATE SHIPPING ABILITY Awareness/Fuller Center For advertising Warner Publishing Services 8941 Atlanta Ave. information e mail A Time-Warner Company Huntington Beach, CA 92627 Habitat for Humanity [email protected] Faxon - RoweCom Library Tel 949.854.8700 or call Services TTY 949.548.5157 PUBLISHER 949.854-8700 ext 306 Ebsco - Library Services Fax 949.548.5966 Swets Blackwell Chet Cooper

ABILITY Magazine is published bimonthly by C.R. Cooper, 8941 Atlanta Ave. HB, CA 92646 (ISSN 1062-5321) All Rights Reserved. Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices. The views expressed in this issue may POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, not be those of ABILITY Magazine PO Box 10878, Costa Mesa, CA 92627; Volume 2010/11 Alfred Molina Dec/Jan Library of Congress Washington D.C. ISSN 1062-5321 Printed in U.S.A. © Copyright 2010/11 ABILITY Magazine The ABILITY Build program outreaches to volunteers with disabilities to help build accessible homes for low income families. We are currently seeking corpora- tions, organizations and churches to sponsor more homes. This award-winning program builds homes and awareness, changing the lives of everyone involved.

abilitybuild.org [email protected] abilityawareness.org While in school, Frank was told he could be one of three things: a cobbler, a print- er’s assistant, or a baker. He said he didn’t want to be any one of those things. His teacher said, “Okay, you’re going to be a baker.”

But over time, the law we now know as IDEA has borne amazing fruit. Today, the majority of students with disabilities are in general education classrooms at least 80 percent of the day. And who made this possible? You did! Parents, families, teachers, therapists, advocates, and communities who refused to accept a medieval status quo for our children.

I think of parents such as Elizabeth Boggs of Cleveland, OH, who founded advocacy groups that pushed local school districts, states, and the entire country to recognize the injustice of wasting the potential of young people with disabilities. I think of the Fialkowski family of Philadelphia, PA, and other families who joined togeth- 35 YEARS OF PROGRESS er to petition states to include their children in public THANKS TO IDEA schools. In 1972, a critical court case, PARC vs. the Common- Dear ABILITY readers, wealth of Pennsylvania, concluded that denying children with disabilities equal access to public education November 18 marked the 35th anniversary of Public was a violation of the 14th amendment guaranteeing Law 94-142, now known as the Individuals with Dis- equal protection under the law. The right of children abilities Education Act (IDEA). This is a tremendously with disabilities to an equal education is not a federal important and successful law, and it embodies a simple mandate concocted by Congress out of the blue and but radical idea: every child can benefit from an educa- imposed on states. It is a constitutional mandate. tion, and has a right to a free and appropriate public education. Thirty five years ago, states pleaded they lacked the financial resources necessary to implement the courts’ Many people today might say this right is self-evident. decisions in PARC and many similar cases. As a result, Three and a half decades ago, however, that was far Congress stepped in and passed IDEA as a method of from the case. Prior to 1975, children in the United offering financial assistance to states in the fulfillment States with intellectual disabilities, physical disabilities of their obligations under the Constitution, and to ensure and sensory disabilities were not guaranteed access to a that such principles as child find, zero reject, parent par- public education. In many cases, children with disabili- ticipation, and due process were integral parts of educat- ties had little choice but to remain at home with their ing students with disabilities. families. Many were shut out of their local schools, shunned by a society that could not see the benefit of The “zero reject” requirement was an extremely impor- educating children who had intellectual disabilities, tant component of this effort. IDEA insisted that all cerebral palsy, spina bifida, hearing impairments, visual children, no matter what their disabilities, had rights to impairments, or other disabilities. an education. And not second-rate, segregated education. The law demanded children be provided free, I understand this historical fact only too well. My older appropriate, and public education that would occur in brother, Frank, lost his hearing at an early age. He was the least restrictive environment possible. taken from our home, our family and our community, and sent clear across the state to the Iowa School for the We knew at the time of IDEA’s implementation that Deaf. Back then, people often referred to it as the education should be tailored to the individual student. school for the “deaf and dumb.’’ Yes, that was the insen- And we knew it is important for children to be in the sitive way in which people used to talk. I remember my school of their community, the school their siblings, brother telling me, “I may be deaf, but I am not dumb.’’ friends and neighbors also attend. So we made sure

6 ABILITY those principles were reflected in the law. Americans with Disabilities Act: equal opportunity, full participation, independent living, and economic self- Today, though we celebrate 35 years of progress under sufficiency. IDEA, our work is by no means complete. In the years ahead, we must redouble our focus on high expectations Sincerely, for students with disabilities. We must ensure that the post-high school reality for students with disabilities includes opportunities for higher education.

Additionally, our focus on students with disabilities can- Senator Tom Harkin not end when they complete school. We must also build pathways into the workforce—real opportunities for Senator Tom Harkin (D-IA) is Chairman of the competitive, integrated employment, with decent wages Senate Health, Education, Labor and Pensions Committee and benefits—for all young people with disabilities. This effort is absolutely critical to helping our citizens harkin.senate.gov with disabilities realize the four great goals of the

ABILITY 7 id you all have a great holiday? It’s still pretty hot Each year, during the week of Thanksgiving, The Winter down here in Florida. I get to wear shorts and no Olympics (or Mini Olympics) are held in Gainesville, Dcoats, so that’s been pretty nice. Even when I’m FL. This is a huge amateur national motocross event. I enjoying time off from racing there’s plenty going on! can’t race in it anymore, because I am a professional, but for many years my family and I camped nearby in a A couple of weeks ago, a crew from CBS’s Courage in motor home with all of my racing friends. Sports filmed my family and me for a television special. It was pretty fun! After a day of riding and interviewing, A lot of people attend this event, and races continue I went to a studio in Jacksonville, FL, for the video from Monday until the following Saturday. Awards are shoot. When I walked in, I was surprised to find TVs given out and, at night, there are games to play and the stacked up everywhere! They all had fuzzy lines on crowning of Ms. Winter Olympics! Everyone has a great their screens and my mom told me she heard “static”! time. Even though I can’t compete anymore, I usually The director of the special said he wanted to create go just to hang out with friends because the event is only “white noise” because I am deaf. It was a pretty creative about an hour and a half from my house! approach, and I had a great time filming. This year Red Bull sponsored a “girls ride” day at the Last year during my break from racing, I visited a Bel- Winter Olympics. Red Bull asked me and Tarah Geiger gian family I’d become friends with while racing in (like me, a WMX Red Bull rider) if we wanted to help Europe. This year they wanted to come to visit me and to out with the event. I was really excited by the opportuni- see Florida for the first time! My family and I were pretty ty because I had never done anything like it before. It excited to have them come visit us, but we weren’t sure was so much fun! Over 50 girls signed up, and I think I what they wanted to see or do. The food in Belgium is a rode for three hours straight! Tarah and I just got to ride little different from ours, so we didn’t know what they and hang out with all of the girls—it was definitely would like! But I did know that they love chocolate and something I would do again. I hope it becomes become mayonnaise, so we just stocked up on those! an annual thing!

They don’t really celebrate Halloween over in Belgium, Now I’m headed out to Colorado to do a photo shoot so my friends were excited to trick-or-treat with me and with my sponsor, Able Planet. After that, I’ll be home for my little brother. My mom and dad walked around my a couple of days and then will go into surgery so doctors neighborhood with all of us. The girls and I dressed up can remove the plate placed in my collar bone after last like nerds and my little brother dressed as Indiana Jones. year’s crash. Surgery is not exactly the way I wanted to My friends were really excited to learn we got to go spend my holidays, but maybe it will give me a chance to from house to house and get free candy! They thought slow down a little and enjoy the season! the whole thing was crazy, but it was a lot of fun for them, and for me too! ashleyfiolek.com

My family also took them to DisneyWorld. My friends wore me down because they wanted to see and do everything and made me their official tour guide! It was very warm while they were visiting, so we hung out at the ocean and rode around my track on all of my pit bikes and four-wheelers. I really enjoyed myself when I went to visit Belgium last year, and I hope my friends had a fun time with me and my family! Left Shauni-Chip-Me-Gritt and Kicker (my little brother is in front!)

8 ABILITY ABILITY 9 s acupuncture an art? A science? A religion? Hey, as receiving acupuncture, although scientific studies to long as it works, who cares? Whatever it is, prove the effectiveness of acupuncture are difficult to Iacupuncture has been used to treat a variety of ail- perform because no effective placebo is available, and ments for about 2,000 years. Though it doesn’t stop can- because there is no way to “double-blind” the subjects cer cells from dividing or make transected nerves in an or examiners. injured spinal cord regenerate, acupuncture has been proven to alleviate the symptoms commonly associated Acupuncture is known to affect different locations on with these conditions. For many people, however, the the body in various ways. The complexity of acupunc- process remains shrouded in mystique. So let’s take a ture treatment stems from the variety of effects that can closer look at how it all works. be achieved by accessing different combinations of pressure points on the body. Acupuncture needles, typi- Acupuncture is the application of small needles, pressure, cally made of stainless steel, are much smaller than the stroking, or electrical stimulation at distinct locations on needles Western doctors and nurses use for administer- the body, generally for the alleviation of pain. Some theo- ing injections. To make the needles more easily handled ries hold that the general effects of acupuncture activate by an acupuncturist, the upper segment of an acupunc- nerve signals to the brain that in turn release substances ture needle is wound in bronze wire or is covered in like hormones or endorphins to affect areas elsewhere in plastic. Since acupuncture needles penetrate the skin the body. Endorphins act as the body’s natural mor- and are not disposable after use, they must be sterilized phine—they can reduce pain or even elevate mood. in the same manner as surgical instruments. Acupuncture may also lead to the release of anti-inflammatory substances, resulting in relief for symptoms of The concept of acupuncture centers around the flow of such inflammatory diseases as arthritis and asthma. “energy” (called Qi) through the human body. The movement of the Qi is defined by twelve channels that Though acupuncture is still not precisely understood are comprised of internal and external pathways. The by modern medicine, it is not irrational to believe that external pathway, existing on the surface of the body, is this sort of treatment can be beneficial to a patient. what is often depicted on an acupuncture chart. Qi chan- Changes in brain activity have been reported on the nels are described as coursing in the body and are associ- positron emission tomography (PET) scans of patients ated with different organs. Treatment of some symptoms

10 ABILITY relates directly to the organ typically associated with Neurological functions, including sensory and motor that symptom (i.e., acupuncture pressure on the stomach skills, improved greatly in patients whose treatments may be applied to treat indigestion), however, other included acupuncture. Researchers concluded that the use symptoms may be associated with one or a combination of acupuncture, when combined with massage and physi- of organs that aren’t commonly linked with such symp- cal therapy, can be beneficial soon after spinal cord injury. toms in Western medicine. For example, pressure on a combination of acupuncture points near abdominal Though acupuncture cannot make paralyzed people walk organs like the liver and pancreas may result in eleva- again, patients whose spinal cord injuries are not complete tion of mood in a person with depression. may find that acupuncture treatment leads to improvement in their daily functions. In some studies, patients with Acupuncture points are located along several layers of incomplete spinal cord injury found that sensation pathways throughout the body, specifically along twelve improved as a result of acupuncture treatment. Improved primary channels called mai. These twelve channels sensation in a mostly immobilized individual can reduce correspond to the major organs: Lung, Large Intestine, bed sores (called “decubitus ulcers”) that may lead to Stomach, Spleen, Heart, Small Intestine, Bladder, Kid- infection and possibly end the life of a spinal cord injury ney, Pericardium (the tissue sack around the heart), San victim. In other studies, spinal cord injury patients experi- Jaio (an intangible, also known as “the triple burner”), enced improvement in bladder control after acupuncture Gall Bladder, and Liver. These organ systems are capi- treatment at sites near the tailbone, not far from where the talized to distinguish them from the actual organs and to nerves to the bladder exit the spinal column. allude to the flow of energy between organ pathways. Additional pathways include the Eight Extraordinary Although it can occasionally result in small amounts of Pathways (Qi Jing Ba Mai), the Luo Vessels, the Diver- bleeding and bruises, acupuncture has minimal risks as gents and the Sinew Channels. Ashi, or “tender” points, a mode of treatment. Moreover, it is fairly inexpensive, are generally used for treatment of localized pain. which is particularly good since few insurance compa- nies cover the procedure. I often tell my patients that, In traditional Chinese medicine, health is a condition of since acupuncture is not risky and is not costly, there is balance within the body of the “yin” and “the yang”. little to be lost by exploring it as a treatment possibility. Particularly important in acupuncture is the free flow of When I speak with a patient about undergoing major Qi. Qi, which forms the yang, is the body’s “vital ener- surgery on his spine, I make every effort to help him to gy” and, as such, is intangible. The tangible counterpart feel better without surgery, so acupuncture often regis- of the yang is Blood, which is referred to as the yin. ters as a viable option. At least two major studies in Acupuncture treatment regulates the flow of Qi and Western medical literature suggest that more than half Blood, enhancing where there is deficiency, “draining” of patients with back pain experience significant benefit where there is excess, and promoting free flow where after acupuncture treatment. there is stagnation. You need not “go East” to receive acupuncture treatment. Although acupuncture points are spread over the surface Many Western clinics now offer various elements of tra- of the body, a large number of these points can be found ditional Chinese medicine, including acupuncture. In along the spine. Additionally, an entire subset of most metropolitan areas in the United States, acupuncturists practice their skills in small offices throughout their acupuncture focuses on points in and around the ear. You communities. Acupuncturists are trained practicioners might notice that the outer perimeter of your ear forms a and must be licensed in most states. When looking for the spiral—in acupuncture, this is referred to as the “helix”. acupuncturist who best suits you, use due diligence, just If you study a friend’s ear closely, you will see another as you would in the search for any physician. And, just as spiral curve in the opposite direction. This is referred to you might during any visit to a doctor, remember that not as the “anti-helix”. An entire set of stimulation points every treatment will be effective. Don’t give up after one over the front and back of the outer ear serves as an or two unsatisfactory experiences with acupuncture. important part of acupuncture treatment for many ail- ments. Some acupuncturists focus on these areas, others For most of us, science is comforting, particularly in combine them with the major body pathways. respect to the treatment of our diseases. However, much of Western medicine remains a delicate balance between In 2003, a team of doctors directed by Alice M.K. Wong, art and science. While acupuncture is considered by M.D., treated a group of patients who were recovering many to be an ancient medical art, it is well established, from spinal cord injuries. The doctors incorporated is not totally inconsistent with scientific principles, and acupuncture in the treatment regimens, as well as standard is not risky or expensive. For those who suffer from Western modalities such as physical therapy. The team of pain or discomfort, it is a viable, practical option that is doctors used mild electrical stimulation at several key often well worth consideration. acupuncture points, including the bilateral Hou Hsi (SI3), Shen Mo (B62), the antihelix, helix, and the lower portion by Thomas Chappell, MD of the ear-back areas. These points are significant because thomaschappellmd.com they are all found on Qi pathways related to the spine. medicalacupuncture.org

ABILITY 11 Carl McIntyre, star of Aphasia: The Movie, rests with son Sawyer.

arl McIntyre can’t throw a baseball very well for the McIntyre family, Carl wasn’t about to give up with his left hand, but his six-year-old son, without a fight. CSawyer, doesn’t really care. He just knows Dad is playing ball with him. Before his stroke, Carl had been a very successful actor and salesman, living a happy life with his family in Char- To Sawyer, Dad has always been the way he is today. lotte, NC. His family remembers he always had a gift for Sawyer doesn’t remember what happened to his father communication.“Everything Carl did involved speech,” on September 15, 2005, but it’s a day that Carl will Elizabeth said. “Whether he was acting or working sales never forget, because it changed his life forever. or doing commercials, his whole life was his voice.”

Five years ago, Carl was at home with his children— Carl appeared in movies, on television, and was a fea- Sawyer, then only 18 months old, and Liza—when he tured voiceover artist in commercials. His career saw felt his arm and leg grow numb. Angry that he was los- him take on a wide range of challenging characters, ing control of his body, and unsure how to recover it, from hard-nosed attorney to family man to jokester. The Carl ended up on the floor, trying desperately to crawl Closest Thing to Heaven, a 1996 film set in Charlotte, to a phone to get help. His children thought Dad, an features Carl as Lester, part of an ensemble of Southern actor, was just playing. characters whose interwoven lives are depicted during the course of a single day. When Carl’s wife, Elizabeth, and daughter Grace came home, they made a similar assumption: this is just a In a commercial for plasma products, Carl is the likable, game. Grace stepped over her dad and continued into sincere guy who makes a viewer listen even if he does- the house, and Elizabeth expressed frustration that Carl n’t think he’s interested. Today Carl jokes he had a “sil- had not yet put Sawyer to bed. She picked up the phone ver tongue” when convincing people to make a pur- and threatened to call 911 unless Carl stopped his antics. chase. But immediately after the stroke, Carl’s tongue She dialed “9”, then “1”, then suddenly realized none of was no longer his friend. The likable actor and family this was make-believe. man was paralyzed on his right side, finding himself unable to speak, read, or write. He even had difficulty At 46 years old, Carl had suffered a massive carotid understanding others. Carl McIntyre was trapped in his embolic stroke that left him with Broca’s aphasia: diffi- own head. culty communicating due to damage to the frontal lobe of the brain. Aphasia affects about one million Ameri- Through years of extensive speech and physical rehabili- cans (or about 1 in 250 people) and is more common tation, Carl fought back to star on the screen once again. than Parkinson’s, cerebral palsy, or muscular dystrophy. Spurred by the generosity of some of Carl’s friends, the short film Aphasia: The Movie was shot in Charlotte and Some people with aphasia are hesitant to speak premiered in May 2010. Since that time the film has been because they are embarrassed by their inability to say selected for five international film festivals and won an what they mean. Progress often depends on the deter- award at the Big Bear Lake Film Festival. mination of the patient to communicate. Fortunately

12 ABILITY McIntyre struggles for help in a powerful scene from Aphasia: The Movie.

Jim Gloster, one of Carl’s best friends and director of University of North Carolina at Chapel Hill, serves as a Aphasia: The Movie, was at Carl’s side after his sudden group facilitator for a weekly aphasia discussion group medical scare. The effects of the stroke on Carl motivated Carl attends in the film. She notes that aphasia affects Gloster to write a role that would allow his friend to everyone in different ways: some people find they can return to the craft he loved. Aphasia, shot in only eight still write, others use hand gestures or drawing to com- days, was produced by a group of Carl’s friends from his municate. Many rely on spoken key words. years in the film industry and from his career teaching and acting with The Charlotte Shakespeare Company. Throughout the film, Carl struggles with long words, sentences, and verbs. He prompts himself by saying “A- A wide array of producers, editors, art directors, grips, B” quietly, and then “C-D” loudly when trying to and musicians put in long hours (and gave up several describe discs that carry music. The word “when” days at their nine-to-five jobs) to help Aphasia: The absolutely escapes him: it has no associated visual, no Movie become a reality. Gloster believes the success of picture by which to give Carl a clue. In order to capture the project is due in large measure to Carl’s innate likabil- the notion of “when”, Carl rattles off a visual list: ity. “Most of our budget went to feeding the crew,” “Chicken, eggs, rooster, hen…When.” Today he still Gloster said, “because so many people jumped on board writes out some words and speaks in short phrases, but to help out Carl.” his speech is smoother, and less struggle is necessary in articulation of his thoughts. Aphasia: The Movie tracks Carl’s frustration, anger, and determination to get his “voice” back. As a result, the Carl’s speech pathology sessions, featured in the film, viewer becomes intimately familiar with the challenges include flash cards with words like “dog” and “flag.” of aphasia. People with aphasia commonly struggle with The “f-words” prove especially difficult for Carl, and a an inability to translate what is in their mind into what is scene in which Carl tries to say a particular “f-word” is spoken aloud. Words and speech must be relearned, as if made humorous by his frustation. Throughout its run- the person is returning to kindergarten. ning time, Aphasia: The Movie illustrates that a sense of humor is essential to the recovery process. As documented in the film, Elizabeth finds herself tasked with teaching her husband basic words: “tree,” On three occasions during the course of a year, Carl “nose,” “salt”, “yes” and “no.” Roles are suddenly attempts to order a “Frozee” from a drive-through win- reversed in the McIntyre family: Carl is unable to say dow. After each attempt, he gives up, empty-handed words that his three-year-old already knows. In one of (“Frozee” is one of those challenging“f-words). When the film’s most touching scenes, young daughter Liza Carl finally manages to get the word out, it’s a heart- sits on her dad’s lap, holding his face while trying to warming victory, until the drive-through attendant asks, move his mouth to help him say her name. When Carl “What flavor? What size?” as drivers behind Carl honk finally utters “Li---za”, his daughter says, “Good, their horns and complain. Aphasia: The Movie com- Daddy! Good!” pellingly demonstrates the fact that everyday activities often present huge obstacles to people with aphasia. Denise Caignon, a speech-language pathologist at the

ABILITY 13 Starring as himself, Carl McIntyre con- fronts a variety of medical challenges in Aphasia: The Movie. The film—written and directed by McIntyre’s close friend, Jim Gloster—has been selected for five international film festivals.

For Carl, the experience of making the film necessitated share jokes, and laugh together. Once happy as a stay-at- he relive some of the worst moments of his life: his home mom, Elizabeth found she had to go back to work stroke and stages of rehabilitation. Carl even had to as a teacher to help support the family. Since the film’s unlearn “yes” and “no” in order to recapture the experi- production, however, the McIntyres say they have found ence of confusion. He had to talk the way he had talked a new sense of purpose and have been able to enjoy a prior to rehabilitation—he had to remember the long, new phase in their lives. frustrating struggles to articulate simple words. As production rolled forward, Gloster found himself amazed Today Carl is a spokesman for aphasia and has made a by Carl’s ability to get back into the groove of acting, career of promoting his film and giving motivational and by his aptitude for making finely tuned adjustments presentations. He plans to teach acting again and maybe to scenes. In the film, when insisting Elizabeth allow even perform a one-man show. When asked how he him to drive to a party, Carl says only the words “I feels about all the attention and travel opportunities that drive,” but he says them over and over, each time with a have been thrust on him since the making of Aphasia, different nuance. Carl says he’s “walking on air.”

Chuck Bloodsworth, the film’s director of photography, Recently, during a presentation in South Carolina, Carl was alarmed by how greatly Carl’s speech improved as noticed his microphone wasn’t working correctly, so he the project unfolded. “I guess working ten hours a day is simply took it off. “Theater is the best theater,” he said good practice,” Bloodsworth quipped. to his audience, as he launched into a presentation filled with keen observations, expressive gestures and humor- Some medical evidence suggests that certain areas of the ous asides. “Stroke sucks,” he said. “Aphasia...really, brain can in fact improve after stroke. In a soon-to-be- really sucks. Some words…I know I know, but…I don’t published article in the Journal of Neuroscience, Dr. know. I never quit. Never quit. Every day hard. But I Julius Fridriksson, Associate Professor at the University of South Carolina, offers data to suggest that spurring win…every day.” changes in the brain tissue of stroke patients can improve blood flow and increase activity in areas surrounding the At a recent showing of Aphasia, Carl’s son Sawyer sat in damage. Fridriksson’s study challenges the common rapt attention, watching his father’s story unfold and see- assumption that potential for progress ends after eighteen ing himself on the big screen. One wonders if this film months of care. As Carl expresses in Aphasia: The will serve as Sawyer’s lasting memory of his father’s Movie, “Hope’s gotta live longer than a year and a half.” stroke. When asked what his children think about Apha- sia: The Movie, Carl smiles, points to himself, opens his Carl dubs his wife Elizabeth, to whom the film is dedi- arms wide, and says “Star!” cated, his “angel” during the trials of his recovery. Eliza- by Anne Wood Humphries beth notes the experience of Carl’s illness felt like losing her best friend: they could no longer watch television, aphasiathemovie.com

14 ABILITY ABILITY 15 ove Simple is not an easy ride. An independent, “When I first read the script, I liked her,” Hernandez low-budget film—produced in three short weeks said of her complex character. “She’s smart and funny Land written and directed by Mark Von Sternberg— and vulnerable. Even though Seta and I are, superficial- it portrays the difficulties of a romantic relationship ly, very different, I knew it wouldn’t be too much of a based entirely on deception. stretch to play her. Deep down she and I are much more similar than not.” The film’s protagonist, Seta (Patrizia Hernandez), suf- fers from lupus, an auto-immune disease that typically While researching her role, Hernandez was surprised to manifests as a skin rash across the cheeks and nose. Her find that lupus is more common than she’d known, and past lovers have been none too thrilled about her afflic- that most people affected by the disease are women. tion, so when Seta starts to flirt with the idea of involve- Being of Puerto Rican descent, Hernandez became curi- ment with Adam (Francisco Solorzano), she decides she ous about the ways in which the disease spans culture. won’t let him in on her little secret. “It’s a pretty big disease in the Latin community, which I didn’t know,” Hernandez said. “The reading I’d done As the movie progresses, and as Seta’s lies become said that lupus breaks along ethnic lines and that Latinos more and more complicated, we learn she’s not the only are hugely affected.” Hernandez hopes Love Simple one hiding the truth. Adam has secrets, too, and the helps bring the disease and its effects to greater public characters’ mutual deceptions cause their lives and rela- attention. tionship to fall apart. Ultimately rendered strangers to one another, they face the choice between moving on or The film has already made a notable impact on the lupus starting from scratch. community. Post-production producer John Casey helped arrange for the film’s iTunes launch in the US As Seta, Hernandez gives a stunning performance. and Canada to donate a percentage of proceeds to S.L.E. Though the character has lupus, she is not defined by Lupus Foundation. Before long, Love Simple was the disease and remains, first and foremost, a person. requested in China, Australia, and England—countries She is passionate, real, and sometimes angry. that iTunes does not reach. Casey and Sternberg signed with Synergetic, an international film distributor, to

16 ABILITY expand the reach of the project. Ten percent of proceeds from Synergetic distribution of the film go to the Lupus Research Institute in New York City.

“We’ve had a tremendous response,” said Casey. “This with the lupus community. “I had done my research, and month, Lupus Magazine created a special Love Simple I had spoken to doctors, but you still never know,” edition. The reaction to this film has been overwhelm- Sternberg said. “This is a serious illness, and I wanted ing and very meaningful.” In a newly launched Spanish to make sure we got the details right: the symptoms, version of Lupus Magazine, Hernandez was interviewed the characterization, and an avoidance of any kind of about her career and the film. self-pity in the character.”

Though Love Simple is billed as a romantic comedy, its But when it came to winning the acceptance of a wider writer-director says he always intended for the project to audience, Sternberg had no trepidation. Though Love have a bit of an edge. “I wanted this film to bring visibili- Simple was his first feature film, Sternberg’s career had ty to a disease,” Sternberg said. “My own experience with been a long and diverse one, often involving writing and lupus was as someone who, like the majority of Ameri- producing small shows in New York City. Sternberg cans, really knew nothing about it.” That all changed, says his specialty is happy endings that aren’t sappy said Sternberg, when he began working as a nursing endings. No saccharine chick-flick gems are on his administrator in the Methodist Hospital of Brooklyn. resume. Instead, the writer-director gravitates toward While there, he overheard a floor report of a patient who independent films that are genuine, gritty and positive. had died of lupus. Fresh out of graduate school, Sternberg began to research the illness and discovered lupus to be a The DVD release of Love Simple is being distributed by mysterious disease with a multitude of symptoms—some Amazon, Barnes & Noble, Target, Walmart and Syner- of which manifest with frightening discretion. getic, and can soon be found on Netflix. For a little film, it’s really getting around. Because he had no intimate relationship with the disease, by Molly Mackin Sternberg was initially nervous about sharing the film lovesimplethemovie.com

ABILITY 17 ew York’s Adirondack Park is a six-million acre Schadt had a tough road to plow: dead trees, falling wonderland for those who love the outdoors. The fences and swampy pathways made the 15-year-old south Nlargest wilderness area east of the Mississippi Franklyn County trail system resistant to overhaul. So River, it attracts hikers and bikers, as well as folks who Schadt, a Recreation and Adventure Travel Ecotourism fish, bird, golf and gallop. But if you’re blind or deaf or student, enlisted help from the staff and participants at the use a wheelchair, you may have a tough time getting in adjacent North Star day treatment program, whom he had on the fun. That’s what prompted Joel N. Schadt to cre- intended to use the trails in the first place. Clients of ate hiking trails that cater to all levels of ability. North Star—who may be deaf, non ambulatory, mentally ill, have low or no sight, or face behavioral challenges— “I’ve worked with people who are developmentally dis- were all recruited as volunteers on the project. abled all my life,” says Schadt, a 21 year-old student at Paul Smith’s College in Franklyn County, NY. “It’s Schadt began by talking to the North Star team mem- what I want to do with the rest of my life.” bers about what kinds of things they wanted and needed in a trail. With this information he created Red, Schadt was inspired by his brother, Matt, 25, who has Green and Blue accessibility levels. Of the three cate- cerebral palsy and cognitive disabilities that his family gories, Blue is most accessible, allowing navigation by attributes to a bad batch of vaccine during Matt’s infancy. wheelchair.

“Matt’s always in the back of my mind,” Schadt said. “I Along the Green path, Schadt derooted and destumped want to be able to hire my brother and everybody else trees to make the way smooth. He put wood chips down like him who is stuck working at a fast food place. If to absorb soppy moisture. The Green trail spoke to the Matt doesn’t work, he doesn’t get Medicaid, so it’s a needs of those who have challenges lifting their feet, or vicious circle.” who experience difficulties with hand-eye coordination and balance. When Schadt was charged with completing a 400-hour externship as a condition of his May 2011 graduation, he Red—the most challenging of all—left roots and stumps homed in on a project that would provide three hiking intact and dipped up and down hills, giving hikers what trails that Matt, and anybody else, could use. Schadt called “a taste of a typical Adirondack trail.”

18 ABILITY ABILITY 19 Between a hardwood bench, and a soft-wood sign, Joel N. Schadt, his brother, Matt, and his mother, Peg, enjoy the three-tiered trail system that Joel created as a part of his externship at Paul Smith's College in New York's Adirondack region. Come on in people of all abilities, the hiking's just fine. (Sister Kim took the pictures)

Though Schadt completed three trails over a span of him or her to cool down and regain a level head. Picnic five or six acres, the cost of his project was minimal, tables are available for lunch al fresco, and grounds are thanks to donations that included 18 tons of crushed ideal for dog-walking. Schadt notes that during winter stone, a gas-powered tamper to set the stone into place, months, the area is wide and flat enough for snowshoe- lumber for fences and benches, and two trailers full of ing or cross-country skiing. wood chips. Schadt recycled or reused everything he could. Some tools that were broken during the project “This was the best job I’ve ever had,” Schadt said. “I’m were even used to make railings. already looking into disability-related organizations I can work with when I graduate this May. I want to take “For anything I couldn’t do or didn’t know how to do,” people out on adventures, and expand their opportuni- Schadt said, “I got people to help.” A friend of Schadt’s, ties and experiences.” well-versed in ecology, taught him that hard woods (such as cedar, maple, and birch) are best for construc- The Joel N. Schadt Interpretative Trail took Joel N. tion of benches and fencing because they would last Schadt about three months to complete. As summer longer—or because, as Schadt put it, “we’d get more ended, Schadt’s volunteers and donors joined North Star bang for the buck.” Soft woods were used to line the employees and community members at large for a cele- side of the trails and to make posts for the signs. A hor- bratory ribbon-cutting in the woods, where everyone ticulturist also donated his services to teach the project’s snacked on Kool-Aid and cookies as Schadt spoke a few participants about forest cycles. words about his passion for the project.

A stickler for details, Schadt made every effort to build Afterwards, Schadt’s guests checked the sign that greet- sensory components into each of the trails. Interpretive ed them at the entrance, selected a trail, and enjoyed signs along the routes allow hikers to identify animals, some of the best the Adirondacks have to offer. herbs and plants as they move forward. Visitors to the trails can break into teams, competing to determine which by Pamela K. Johnson group can pick out the most specimens. The trails also provide ideal posts for watching or listening to birds. Joel Schadt’s favorite websites: Developers of New Hampshire’s first accessible trail in mountain terrain. Just outside the North Star center, Schadt and his volun- crotchedmountain.com teer crew built a twelve-foot-by-twelve-foot deck on which the staff can socialize. If tackling a challenging Outdoor adventures for those who never thought such things were possible. behavior issue, staff can take a client on a walk, allowing wildernessinquiry.org

20 ABILITY Colonel Jennifer Menetrez delivers the keynote address at Neuroprosthetics 2010, an international conference on artificial limb development. A medical doctor, Menetrez directs the US military’s most advanced rehabilitation facility for amputees.

olonel Jennifer Menetrez sympathized with the Whatever the true numbers of those afflicted, post-earth- man on the hospital bed. She knew his status: quake conditions in Haiti remain less than ideal. The Clower spinal cord injury. Lower leg amputation. already-low life expectancy of Haitians has been com- This man would never walk again. pounded by sanitation problems resulting from the earthquake and associated injuries. Amputees face the nearly At least, that was what he had been told by caretakers, impossible task of keeping their wounds sterile, although shortly after a 7.0 earthquake had rocked Haiti and killed Haitians continue to take great pride in cleanliness and 220,000. The region’s limited resources would be direct- presentation. ed elsewhere. Menetrez, however, believed in this man. She knew he might someday walk, if only someone took Throughout Haiti, the emergence of tent cities (formally the time to work with him. known as Internally Displaced Persons Camps) fostered additional health complications. Amputees struggled to A few beds down from the nameless man was a nameless use their prostheses while traversing rough terrain and, woman: pregnant, paralyzed, and unable to speak. Out- without the benefit of running water, trying to keep their side her room sat a man-made wheelchair with a dirty, skin clean and healthy. plastic lawn chair attached as seating. For those people still facing rehabilitation, hope often This is the situation Haiti faced, and still faces. seems slim. A primary rehabilitation center near Port-au- Prince is only accessible via dirt stairs that run up one Menetrez had been deployed to Haiti to lead the com- hillside and down another. Amputees gather near hospi- bined US military medical response. She had arrived on tals in the hopes of being treated. For those with prosthet- the USNS Comfort, an 894-foot floating hospital com- ic limbs, there is no time for, or inclination toward, thera- manded by the US Navy. The ship saw 820 surgical cases py. Patients begin using their new legs from the moment during immediate Haiti relief efforts. The estimated total they try them on. of amputees resulting from the Haitian earthquake is generally accepted at 4,000, but Menetrez says approximate- “Life in Haiti is rehab,” Menetrez said. “This is the type ly 1,500 amputees were surgically treated after the earth- of environment in which they try to live.” quake, 37 of whom were on the USNS Comfort.

ABILITY 21 At the Neuroprosthetics 2010 conference fittings are described for a prosthetic to a soldier’s area of amputation.

Living in Haiti with a disability is often seen as a curse— foot facility built from donations from more than 600,000 a sign that a family did something worthy of punishment. people. It showcases an impressive team effort by a mul- Voodoo is very much still alive in the small country, and titude of specialty departments including, but not limited people with disabilities have no rights and grim futures. to, physical medicine, physical therapy, occupational They aren’t offered jobs. They’re taunted in schools. therapy, burn therapy, prosthetics, and case management. Structural adaptations are virtually non-existent. Research and clinical departments at BAMC are housed On a global scale, these challenges are not uncommon. within the same building, a rarity among many large “Haiti is a good example of what goes on in much of the hospitals, and provide a powerful bridge between design rest of the world,” Menetrez said. “It’s really survival of and practice. At BAMC, an amputee isn’t just fitted with the fittest. It’s a very hard life.” a specific prosthesis—he’s fitted with one that may allow him to run a marathon upon completion of rehabilitation. And yet, some measure of hope remains. This November, Veterans are led on full horseback riding excursions Menetrez delivered the keynote speech at Neuroprosthet- through the countryside, participate in sled hockey, and ics 2010, an international conference on artificial limb make full use of the Flowrider: a recreational water development at Worchester Polytechnic Institute. She device that simulates wakeboarding and surfing. spoke of her experiences in Haiti, but also of her day job as director of the Center for the Intrepid at Brooke Army As part of occupational rehabilitation, BAMC engages Medical Center (BAMC), a rehabilitation hospital for veterans in a firearm training simulator that re-establishes injured American veterans who have returned from Iraq their comfort with weaponry. Additionally, an “Activities and Afghanistan. of Daily Living” apartment—which, by design, is not accessible—forces veterans to overcome daily hurdles The achievements made at BAMC draw a sharp contrast they may face outside of BAMC. with the struggles Menetrez witnessed in Haiti. As of October, BAMC has treated a total of 1,097 amputees, 20 The rehabilitation center’s hottest ticket, however, is its percent of whom had upper-limb amputations. Another driving simulator, which allows veterans to get back 20 percent had multiple amputations. behind the wheel and become re-acclimated with motor- ized vehicles. But Menetrez notes that even this activity The Center for the Intrepid is a four-story, 65,000 square- presents a range of challenges.

22 ABILITY “Our patients were in a war,” Menetrez said. “They were blown up. So sometimes you get them in the driving simulator and find they actually swerve away from things on the side of the road or zoom under overpasses without even realizing that’s what they’re doing. Daily activities are really important aspects of rehab. It’s not just about regain- ing physical ability.”

That’s not to say, however, that physical rehabilitation gets Col. Menetrez participates in an interview short shrift at BAMC. at the Neuroprosthetics 2010 conference. Through participation in the Gait Lab, which utilizes 26 cameras and eight force plates, veterans can traverse an uneven surface through which an instrumented treadmill allows them to improve ambulatory performance. Within moments, a flat walkway can transform into a set of stairs at a 40- degree incline, allowing researchers to collect important data on a patient ‘s progress and capability.

But for a number of veterans, social engagement might provide the most useful therapy of all. In the BAMC computer lab, injured veterans can reconnect with their units and swap experiences and memories. Menetrez says this aspect is vital for a patient’s psychological recovery.

“When our patients were injured overseas, they tend to feel a lot of guilt,” Menetrez said. “Many of them want to go back. Meanwhile, their units are worried about what happened to them. So it’s very important that everyone has the capability to reconnect. We even have to pay attention to the anniversary of the patient’s amputation. We often find that as he approaches that date, something doesn’t seem right in his behavior. It’s not even a conscious thing. But it’s something that needs to be taken into consideration.”

Despite the success of BAMC therapies and technologies, Menetrez is quick to warn that the challenge of recovery ultimately falls on the medical provider. Even amidst its slew of fancy machines, facilities and state-of-the- art prosthetics, the key to the success of BAMC remains its ability to place focus on the patient. And thousands of miles away, in the unsanitary environment of Haiti—its rigged equipment, dirty hospitals, and overcrowded wards—the same truth holds. If a patient isn’t being helped, the equipment means nothing.

“Can that upper-extremity prosthesis help wipe a butt?” Menetrez asked. “Can it help perform transfers if you’re someone who has lost both arms and maybe your legs? What does it do to improve someone’s function? That’s the bottom line. We can never lose sight of the patient.”

by Josh Pate sammc.amedd.army.mil

ABILITY 23 Born with congenital visual impairment, musician Lachi brings sweet sounds to the masses. Lachi’s band, which shares her name, is made up entirely of musician’s with vision-related disabilities.

elissa Ulachi Ulanma Offoha might be a and right now we’re busy recording our next album. We mouthful of a name, but under the stage per- were doing a bunch of shows in the northeast while Msona Lachi, this talented musician has no trou- Lachi circulated. We hit up Boston, we hit up Jersey, we ble making herself remembered. For two years, Lachi hit up New York and Philly. It was kind of a crazy tour. has been touring the East Coast and lighting up venues like The Knitting Factory, Ella Lounge, and New York Mackin: What kinds of venues does Lachi usually play? University, where she received her Master’s degree in music technology. Lachi spoke via telephone with Lachi: Well, we generally hit up two different types. ABILITY’s Molly Mackin about her musical influences, Our band is able to play hard rock—I’ll call it acoustic band chemistry, and personal challenges. rock—but we can also play an acoustic folk setting in which we’re not all plugged in. We do those folk set- Molly Mackin: How long have you been performing? tings a lot. We do a lot of acoustic shows at smaller venues that tend to be pretty packed, but we play rock Lachi: Oh, I’ve been doing music forever. I started play- venues as well. ing the piano somewhere between the ages of four or five. I got my first keyboard at, like, eight. Ever since Mackin: When you say “unplugged”, you mean com- then I’ve just been writing songs. (laughs) I have a mil- pletely acoustic? I assume you have a drummer? lion songs. Lachi: Yes. We have a drummer that plays with a full kit Mackin: Who were some of your musical influences? when we play our full setup. But when we play acoustic, sometimes he’ll play a thing called the cajon. It’s a hol- Lachi: I listened to a lot of The Beatles and Radiohead lowed-out box. He sits on top of it and plays the box while I was growing up, as well as to Bjork, and a lot of beneath him. It sounds really cool. the alternative, avant-garde rock. Lauryn Hill, Fiona Apple, Yanni, Mozart. All kinds of music. Mackin: Are all of the songs you perform original works? Mackin: Tell me a little about your most recent project. Lachi: Every once in a while we’ll throw in a cover, but Lachi: We released an album called Lachi on July 22nd, generally we play original songs, yeah. We’ll do some

24 ABILITY female-fronted rock covers: Imogen Heap, No Doubt. bad. Another guy, I think his is congenital. But we do some Beatles covers, too. Everyone in my band is into The Beatles. But we’re also pretty into Zep- Mackin: Are you able to read Braille? pelin, Guns n’ Roses, Lynyrd Skynard. I personally listen to a lot of weird piano chicks. I don’t know if Lachi: I do understand Braille, but I can also read text, you’ve heard of the Dresden Dolls? We have a big so obviously I usually just do that. If I’m in a situation array of influences, I guess. in which there’s only Braille available—like, if we go to one of those blind conventions, then I’m fine. But I Mackin: How many band members are in Lachi? actually prefer text, just because everything is in text, most of the time. Lachi: Including me, there are four of us. I do piano and vocals, and the guys are drums, bass, and guitar. And I can’t really read Braille music very well because I everyone sings backup vocals. can’t coordinate putting my hand on the paper and playing the notes at the same time. I don’t know how people Mackin: And there’s good chemistry between all of you? do it. It leaves me with one hand to read and one hand to play a two-handed song, so it’s not going to work. Lachi: We’re like best friends. We hang out at each oth- (laughs) But I can read standard printed music because I ers’ houses, and we get up in each others’ faces all the studied music theory in college. I have to be very close time. The three guys all met when they were younger, to the page to be able to read it, though, so It slows me and I think they tried to put a band together, but it kind down so much that it’s almost ineffective. It’s easier for of fell apart. Then they all went and each did his own me just to learn by ear. thing. I came in and got them all back together. So it’s a tight dynamic. Mackin: What’s ahead for your band, in terms of touring and exposure? Mackin: How did you get involved with your management group, Inherent Artists? Lachi: Right now we’re working with producers who have collaborated with Akon, Mary J. Blige—people Lachi: Basically they had put a bunch of ads out, look- who are out there and who have made some rounds. I ing for female artists. I had just gotten out of a manage- think it would be interesting to take our weird style and ment contract, and I wanted to do my own thing. I mix it with some mainstream producers and see how thought managers were just out for my money, you acceptable the result becomes to the everyday listener. know? But then I saw the ad from Inherent and we We’re also planning a West Coast tour. Hopefully that hooked up, and I’m glad we did. The funny thing, will happen next year. though, is that hundreds of women had responded to the ad, and apparently Inherent didn’t like any of them As soon as we get some demos out, we’re going to try to sign up with another label. I think we need something except for me. And by signing me, they ended up with bigger. We’ve pretty much outgrown the place we’re at three dudes as well. (laughs) now, and I want to get our music into movies and commercials. Once you get placed, the checks just come in. So I’m the only chick on their roster, even though they My long-term goal is to be able to live comfortably off wanted to only represent females. In the New York of music alone. A couple of us in the band have day scene, it’s rare to find females who rock hard. A lot of jobs, and we don’t want to have those any more. booking agencies will put me in an all-female lineup, (laughs) and I don’t fit because, first of all, my band is a bunch of dudes, and second of all, we’re doing alternative rock Mackin: Do you have a day job? while a lot of other women here in New York tend to stick to singer-songwriter material. Lachi: I do. It’s funny, because I’ll go into work and somebody will be like, “My friend just heard your song Mackin: And everyone in your band is legally blind? on the radio in California! That’s weird that we just sit next to each other and you annoy me.” Lachi: Yeah. We all have different degrees of sight. One of the members is totally blind, and the rest of us have I’m like, “Thanks!” (laughs) So yeah. I’m hoping to partial blindness. quit this day job. Mackin: Were you born with your visual impairment? ulachi.com

Lachi: Yes. It’s congenital. I’ve always had the same level of acuity, since the day I was born. My bandmate who is totally blind once had perfect vision and went blind when he was very young. Another bandmate was blind and then had a surgery, but his sight is still really

ABILITY 25 Left: Playwright and poet Laura Hogikyan accepts the VSA’s Playwright Discovery Award. Right: Stills from the production of Hogikyan’s play, The Marionette Effect.

ome seventeen-year-olds draw inspiration from young talent with social messages. “It’s an opportunity teen idols. Laura Hogikyan, a freshman at Har- for middle and high school students to write a play that Svard University and accomplished playwright, incorporates the topic of disability,” Miller said. “The looks elsewhere. program is really a way to get students thinking creatively about the idea of disability.” “When I think about who inspires me, it really does come down to family, friends and teachers,” Hogikyan Each fall, the VSA issues a call for scripts and mails said. “Big-name figures are just too far away to really publicity posters to thousands of schools across the be inspirational.” country. The competition also accepts scripts from groups of students, provided that the students meet a set Hogikyan’s play, The Marionette Effect, recently won age criteria. This year, Hogikyan’s play emerged as one her the 2010 Playwright Discovery Award, an honor to be remembered. awarded by VSA, the international organization for arts and disability. Hogikyan’s original dramatic work tells “I thought Laura’s script was fantastic,” Miller said. the story of a young woman whose musical career is “It was a really mature piece, a really thoughtful piece, derailed after she experiences a stroke at the age of 15. and the production tried to capture the poetry she incorporated into her work. There were a lot of Although the play is not autobiographical, Hogikyan imagery and metaphors written right into the script. It says that some of her protagonist’s challenges mirror her was a really lovely realization of all of those ideas.” own. “I had an experience with a hand injury myself,” Hogikyan said. “Since I was a pianist, I drew on that to For her part, Hogikyan is quick to praise the experience write the script. If all the world’s a stage, this play kind she shared as a VSA honoree. “I can only say good of turns that concept on its head: the stage is inside the things about VSA,” Hogikyan said. “The production protagonist’s mind.” was so much better than I’d imagined it on my own. The imagination of so many different people went into this, Liz Miller, director of performing arts for VSA, believes and the opportunity to meet people who are profession- the Playwright Discovery Award—now entering its twen- ally involved in theater was really amazing. I got to be ty-seventh year—stands as an important investment in around people who are doing what they love to do.”

26 ABILITY Each year, the VSA’s program culminates with a fully- Last summer she participated in a poetry program at Iowa staged production of the winning script at the Kennedy University’s acclaimed Writer’s Workshop. Center’s Family Theater. Designers, directors and actors are all hired for the production and undergo three weeks Since the age of five, Hogikyan has also developed her of rehearsal before the performance commences. skills as a pianist. Under the guidance of some of the top instructors in the nation, she’s studied at the Chau- Miller says collaboration is key to the success of the tauqua Institution in New York, The Eastman School of enterprise. “What’s really neat about the Playwright Music, and at a number of other celebrated programs. Discovery Program is that it does provide a winning Somehow she still finds time to teach piano to others, playwright an opportunity to revisit their script with the despite a daunting Harvard courseload. director,” Miller said. “This year we hired Janet Allard, a previous recipient of the Playwright Discovery Award, “Harvard is pretty supportive of students taking what they to work with Laura. Laura said that mentorship was one want to take,” Hogikyan said. “They tell you to never of the best aspects of the whole process: she got to take a class if you don’t want to take it. Right now I’m in revisit her script and improve it and think about it some a seminar on Senecan tragedy, an intensive ancient Greek more. When you’re in school, there isn’t much time for class, advanced playwriting, and a seminar on morality that revision process.” with Alan Dershowitz. You can kind of make your schedule what you want it to be. I love my classes here.” Hogikyan found herself inspired by the experience, and more eager than ever to continue life as an artist. “It And homesickness? Hogikyan doesn’t seem to have really makes you think about the power of the arts,” any interest in it. “We’re big kids now,” Hogikyan Hogikyan said. “This was a lot of work for everyone, said. “We’re okay. There are so many opportunities getting the whole thing put together, and everyone went here. So much you’re thinking about all the time, so above and beyond. It was really, really amazing.” much work and other things. There’s not a lot of time for anything else.” Hogikyan is not entirely unfamiliar with the glow of by Stan Hoskins accolades. She’s an accomplished playwright, producer, poet and teacher, and has won numerous national awards. vsarts.org/x244.xml

ABILITY 27 Multi-faceted artist Lana Gillaspie accepts an award during the National Veterans’ Creative Arts Festival.

ana Gillaspie doesn’t mind if you peek inside her were in attendance at the time of that solo poetry perfor- journal. Sometimes her words are crystal clear mance, admits she was trepidatious about baring her soul. Land pop off the pages. Other times they’re a little smeary. You might be able to pick up a word here, an “I was really, really hesitant to perform that solo idea there, but the responsibility to complete the story because it’s not for everybody’s ears,” Gillaspie said. “I often falls to the reader. was apprehensive to let everybody know that I was vulnerable and how much I hated MS. But I went ahead But Gillaspie’s deepest thoughts aren’t best deciphered with it. My thinking was that the more people become from her personal book of memoirs—a hardbound tome aware of MS, the more they might help out and donate filled with paper pages. Instead, Gillaspie would prefer and find out even more about it.” you turn to her artwork. Established in 1989, The Creative Arts Festival provides Beginning from a kernel of an idea she might discover an annual medium through which veterans like Gillaspie through journaling, Gillaspie spins her private medita- can share their voices or emotions. Liz Mackey, director tions into beautiful works of art.“Sometimes there might of the festival believes such experiences can be powerful and healing. be a word in my daily journaling,” Gillaspie said, “or a sentence that lets me create a story or a poem.” “A lot of times you might be telling someone else’s story as well as your own,” Mackey said. “Maybe your With a group of approximately 120 military veterans, story is similar to someone else’s circumstance but they Gillaspie recently traveled to La Crosse, WI, for the couldn’t express it in the same way. We’re helping National Veterans Creative Arts Festival, hosted by the establish connection each time somebody sees why a United States Department of Veterans Affairs. The event veteran created a piece of artwork, each time someone marked the culmination of a year-long competition in art, hears the story behind a piece or performance. Someone music, drama, dance, and creative writing for veterans might say, ‘I can relate to that. You just expressed what with disabilities. Solidifying her place as a Renaissance I’ve been feeling for so long.’” woman, Gillaspie, who has multiple sclerosis (MS), has won medals in dance, drama, group prose, group comedy, Sometimes, however, the feelings expressed in and and solo poetry. evoked by the veterans’ artwork are ones they’d rather forget. “I did a solo for a national event about being diagnosed with MS,” Gillaspie said. “I wrote about how it made “Some of our veterans have nightmares related to their me feel, and what I did afterward. I didn’t let MS run traumatic experiences,” Mackey said. “One of our veter- my life.” ans literally uses art to face the demons he sees at night. He’s able to paint or carve the faces. That was our Best in Gillaspie, who estimates between 2,000 and 3,000 people Show art piece this year. It was incredibly moving.”

28 ABILITY ABILITY 29 30 ABILITY Though Gillaspie admits she hasn’t always been attracted to artistic expression, she recalls that it took only a weekend for her perspective to change. In 2005, when she was in the hospital receiving treatment for her MS, Gillaspie was given a bead kit by her recreational therapist. In no time at all, Gillaspie had completed the entire kit. She wanted more. In her very first festival competition, Gillaspie nabbed the title of “Best in Show”, sparking a long string of successes at the Creative Arts Festival.

According to Mackey, Gillaspie’s discovery of, and immersion into, creative expression is far from unusual for veterans.“A lot of people don’t dabble in the arts until somebody introduces them to it,” Mackey said. “Some of our veterans with physical disabilities use the arts as a form of rehabilitation. Through the physical motor rehabilitation process of working on a craft kit in an occupational therapy clinic, or lacing a wallet, they’re producing something useful and functional. Then, maybe, they’ll dabble in something else, like poster art or painting or drawing. They enjoy the process while they’re involved in the therapy.” “You can still accomplish things no matter what your Gillaspie has won some of her strongest acclaim and limitations are,” Gillaspie said. “A lot of people dance notoriety for her skillful wheelchair dancing, complete in wheelchairs, even with partners. It’s totally do-able. with choreographed moves and turns. Her performances Some people think they have limitations, but that’s what have often been awarded top prizes. limits them. I look at it as, ‘I’m not disabled, I’m differently abled’.” “People think I’m stepping with my feet,” Gillaspie said of her technique, “but I’m just using my wheels as my Mackey believes the positive attitudes illustrated by feet. In certain parts of the music, I’m twirling around or people like Gillaspie are powerful and nourishing forces maybe going backwards or forwards, trying to get in in communities that don’t have much exposure to, or rhythm with some music. It’s harder to choreograph experience with, people with disabilities. dancing because of the wheelchair.” “Our main goal for our program is to educate our com- Harder, but not impossible. As a wide array of artistic munity about the arts,” Mackey said. “It’s important peo- possibilities opens up before veterans with disabilities, ple know how useful the arts are in the lives of veterans, often alleviating some of their medical concerns, many whether they have physical-motor challenges or mental come to love the arts so much that a creative life contin- health issues. The arts are a big part of treatment, and are ues well past completion of their therapy. very effective treatment.”

For veterans who, like Gillaspie, don’t regularly partici- Gillaspie’s decision to immerse herself in the arts has pate in adaptive sports, artistic expression is a crucial proven to be a powerful, lasting and cathartic one. It’s a part of life and fulfillment after disability. “You’ve got to decision she hopes might prompt others to follow simi- have some sort of outlet somewhere,” Gillaspie said. “I lar paths as they decide how to confront their disability. enjoy participating.” “Attitude is a choice,” Gillaspie said. “It’s totally up to Gillaspie notes that, outside of its creative and therapeu- the individual to decide, what attitude am I going to be tic benefits, involvement in the arts solidifies the impor- in today? I didn’t sit around a lot before I got MS. I tance of setting goals, meeting them, and then setting played sports and was involved in a lot of activities, so even higher goals. why wouldn’t I stay busy now?” by Josh Pate www1.va.gov/opa/speceven/caf

ABILITY 31

wice a month I walk four easy minutes to my park outside my building, near the laundry room, and I local tram stop, hop on the tram, and disembark could then run an extension cord through the window. Tfifteen minutes later at Ebertplatz. From there I But the parking spot near the laundry room was already walk just five minutes to join the other women of my allocated to someone else. At a loss, Andrew parked his writing group. My trip is usually so easy, I don’t even car underneath our apartment, in an available parking think about it. Last year, however, tram and subway ser- spot, and we began improvising. vice to this station—which happens to be one of the busiest of Cologne’s public transportation system—was Implementing our operation reminded me of Rapunzel unexpectedly disrupted. letting down her hair. First, an extension cord was fed down from my window (and clanked its way along my As might be expected, this sudden change in my usual neighbor’s!). But sure enough, the cord was not the route prompted some personal adjustments. Each time I right length for our purposes. Up went the cord, and waited at the station, my lungs were now greeted by another extension cord was added to it. This worked! pungent clouds of dust. Bagfuls of concrete fragments had now been piled high, right next to the tracks. At 11 But now the question arose: what would happen should pm, transit workers blasted concrete at deafening deci- it begin to rain? The cord retreated back up through the bels, each worker entertaining me with evening fire- window. In pitch blackness, we searched through my works while welding pieces of train track. outdoor balcony storage area and managed to find an all-weather extension cord. Finally we had a system that Every week there seemed to be more boarded walk- just might work, and Andrew’s scooter could be charged ways, exposed wiring and blocked exits. And then, there all night, even if it should rain. was the unthinkable: my station was closed for the whole summer. I complained loudly to my family and The next morning we were all set to go exploring. friends about this unnecessary hindrance to my travels. Andrew painfully walked up the twenty steps to street level, and we all climbed into his car, off to the Cologne My friend Andrew is able to walk, but with such excru- Cathedral. We chatted amiably, Andrew behind the ciating pain in his back that he needs to use a mobility wheel, and anticipated finding disability parking under- scooter to get around. It wasn’t until he and his wife neath the cathedral. We searched for the familiar wheel- Bonnie visited me in Cologne that I became acutely chair sign—but our hopes were dashed. After circling aware of what was actually happening at my tram stop: around the parking lot a few times, we finally decided to Ebertplatz was the first of several stops that were being settle for any spot we could get, thinking we had some- transformed into disability accessible stations and trans- how missed the disability parking. fer points. I found an attendant and asked him where we could find During Andrew’s visit I had the opportunity to discover a disability parking spot. “There aren’t any,” was his first-hand what it means to get around a city as a person curt answer. with a disability. Even as they were planning their trip from England, Andrew, Bonnie and I discussed the “Do you have an elevator we can take to get out of logistics of getting around Cologne. Andrew had recent- here?” ly purchased his mobility scooter (which looks a lot like a golf cart) and needed a vehicle large enough to contain “Nope. We don’t have one of those either.” it. This meant the couple had to buy a new car. Addi- tionally, Andrew and Bonnie couldn’t fly to Germany “Then how are we supposed to get out of here?” I asked. because there was no way Andrew could get his scooter The attendant’s nonchalant answer was that we could onto a plane. Nevertheless, Andrew wanted to use the simply take the scooter out through the exit, where the scooter throughout Germany, to have some indepen- cars leave the garage, and then find our way through the dence of movement on their trip. So he and his wife streets and sidewalks of Cologne. decided to drive here. Dejected, we rolled out of the garage, forcing the car From the outset, we all knew Andrew would need peri- behind us to wait, only to find ourselves in a huge con- odically to charge his scooter’s battery during our trav- struction zone that had no sidewalks. With no other els. In order to do this, Bonnie and Andrew would need options, we rolled on down a road and even onto gravel, access to a power outlet. I live in a first-floor apartment which irritated Andrew’s scooter. Eventually, somehow, so, upon my friends’ arrival, the three of us set about we were able to get onto a sidewalk. But how would we finding a way to run an extension cord from my place to get to the cathedral, uphill from the parking garage? Andrew’s car. We would also need an adaptor, however: Could we find our way without stairs? English plugs are not the same as those in Germany. Somehow we did! And although we had to take the long Charging Andrew’s battery proved to be more of a chal- way around to get there, we finally made it into the lenge than I had anticipated. I had figured he could simply cathedral, and could move around inside of it at liberty.

ABILITY 33 As a resident of Cologne who enjoys showing my on another elevator that took us to the basement where guests around, I was overjoyed that there was a way for the jazz concert was to take place. All went well. After a person with a disability to get into the cathedral, even the concert we went grocery shopping at a health food if finding it had been a bit difficult. supermarket that, alarmingly, featured aisles wide enough to accommodate a scooter. Shopping in a department Near the cathedral we found an outdoor café and store proved to be no problem. This was getting fun! parked Andrew’s scooter. He managed, with a few pained groans, to climb onto a chair and we enjoyed Feeling inspired, we decided to take a tour of the Rhine. the afternoon sun and delicious Kölsch beers with our We phoned the shipping line and were told we would lunch. Our courage fortified, we continued our adven- have no problem taking Andrew’s scooter. What a ture, heading over to a two-story music store where delight (and a relief!) it was to watch Andrew’s scooter Bonnie, a musician, browsed through sheet music. roll steadily up the gangplank, onto the boat, towards an Here Andrew’s run of good fortune came to an end: onboard elevator that could take us right to the deck! I there was no way for him to get upstairs. Instead, he was so excited I bought us all cakes and tea. waited at ground level, where he entertained other shoppers with his jokes. I wondered if he found it The weather was glorious, warm and sunny. My pleasure funny that there was no way he could look at or buy at watching the scenery was intensified by the feeling of sheet music if he needed it. gratitude that this was all possible. Life does not dimin- ish, I discovered, if you are in a wheelchair. My eyes Continuing down the main shopping street, we decided were now open to the very real possibility of traveling to stop for ice cream cones. It was then that we noticed the globe as a person with a disability. that Andrew’s was the only scooter amongst thousands of pedestrians. Where were all of the people with disabilities in Cologne? Did they not exist, or were they Our return Rhine trip, however, proved slightly more hiding somewhere? difficult. The boat we boarded was an old, romantic steamer with no elevator. Though there was a makeshift On another venture into the city, we decided to try tak- lift on the stairs, it was too narrow to accommodate ing Andrew’s scooter onto the tram to hear a Saturday Andrew’s scooter. Nevertheless, we sat on the deck of afternoon jazz concert. We all managed to get onto the the ship’s main level and were treated to a great view. tram with no mishaps, grinning at each other with relief. We shared our space with bikes and baby strollers. Having seen, first-hand, the needs of a traveler who has a Someone on the tram assumed that we wanted to go to disability, I now find myself looking for people in wheel- the zoo, the stop for which is along the same line as the chairs or scooters when on my own excursions. Though I one we were traveling. A stranger informed us, howev- rarely see such people in Germany, Cologne is steadily er, that a scooter can’t get off of the tram at the zoo. becoming better prepared for them when they do show Thankfully our station, Appelhofplatz, had a high, dis- up. This summer, in fact, the tram stop at the zoo was ability-friendly platform and an elevator! demolished and beautifully rebuilt. I look forward to the day when sidewalks, car parks and trams are packed with Once at the concert, we took an elevator to the sidewalk tourists and shoppers who ride in mobility scooters! I will outside, went into a city-center shopping mall, and got happily put up with the congestion.

34 ABILITY hat time of year is more magical than the weeks Whatever your preference, these Christmas markets are Wthat lead up to Christmas? And what more magi- open from November 22 until December 23, from 11 cal place exists than where Christmas traditions—like am to 9 pm. the Christmas tree—began? I’m speaking, of course, of Germany, where the streets are brilliantly lit up and the There is also a Christmas market on one of the Rhine shops are beautifully decorated for Yuletide celebration. boats: the MS Wappen, visible from along the Rhine Promenade. The deck area of this boat is wheelchair If you find yourself in Germany this holiday season, accessible and the admission fee is €2. The MS Wappen here are a few ways you might celebrate or get yourself is open from November 25 until December 21, from 11 into the proper spirit: am to 9 pm on Mondays through Fridays, and from 11 am to 10 pm on Saturdays and Sundays. Meander through Hohe Strasse or Shildergasse—preferably in the morning, because in the afternoons and If you love the feeling of being in an ancient city, the evenings these locations can be very crowded. Stop at medieval market outside the Schokoladenmuseum the department store Kaufhof and look at the Steiff (Chocolate Museum) at Rheinauhafen might be for you. stuffed animal exhibit. Bring a child or two along, if you This attraction is mystical and entrancing, especially at can, and watch their eyes light up. Go out for a cup of night, and will transport you back to the Middle Ages— hot chocolate or coffee at one of the nearby cafés. with an absence of electricity, but plenty of torchlight and stalls run by people in Medieval costume—though Visit a Christmas market. Cologne alone has six of it may be too crowded for wheelchairs. The market these! I prefer the one at the square around the Dom costs €3 to enter, unless you are under one sword’s because from there you can hear the breathtaking peal length in height! of the cathedral bells, every hour on the hour. The bells resound in full glory at 6 pm, but the market might be a Another fun, Medieval-style Christmas market can be little difficult to navigate with a wheelchair at that time. found in the nearby town of Siegburg. This market is This particular market is brimming with nostalgia, as similar to the one near the Schokoladenmuseum but is well as with lots of tastefully handmade crafts. Some much larger, with dozens of stalls and attractions, and visitors prefer the market in the Old Town at the Alter- has no admission fee. Parking is challenging here, how- markt (near the Rhine) because it is smaller, has hand- ever, so you might be best served visiting by train. The crafted gifts and also several attractions for children. market is open from the last week of November until

ABILITY 35 Andrew and Bonnie’s German vacation

just a day or so before Christmas Eve. Its hours are 11 During the weeks before Christmas you can also hear am to 8 pm. wonderful, inspiring concerts in the many Romanesque or other churches, in the Dom, and in the concert halls. Go on a Nativity Scene tour. Known in Germany as There’s nothing more thrilling than hearing a concert of Krippenwegs, these tours are especially popular just music written by a German composer and performed in after Christmas. Some churches wait until Christmas to an authentically German setting. The Philharmonie put out their nativity scenes. After the holidays, orga- arena holds several holiday concerts each year. nized tours are made available for you to join. If you are coming to Cologne by car, ample disability Go on a Rhine cruise. The Goethe, a romantic paddle- parking is available along the streets. Disability parking wheel ship, features a passenger lift but cannot carry in the parking ramps is somewhat more difficult to find, wheelchairs to the upper decks. If you are able to board but there is designated disability parking in the Philhar- this ship, you can enjoy a brunch cruise. Another ship, monie Tiefgarage at Bischofsgartenstr. the Traumschiff Ahoi (also called MS Rheinenergie) also features evening entertainment and is completely wheel- by Noreen Nanz chair accessible. koelnerphilharmonie.de

36 ABILITY o how did an aspiring artist and photographer end give medals for ranks; I’d have been able to pin a few up working nights surrounded by medical equip- ribbons on my scrubs). Early treatments might have Sment and sick people? been much more fun if they had been given for cosmetic reasons, but my Botox, Myobloc and eventually Deep I blame my father. He’s not here to defend himself any- Brain Stimulation (DBS) treatments were prescribed to more, but take my word for it: there was no way he was ease some less-than-glamorous symptoms. going to let any of his daughters become starving artists. How much trust would you put in a nurse who twitched So now I’m a semi-starving nurse. When I started nurs- and twisted? Not much, I’d imagine. So, at first, I ing, my salary was $8.65 an hour. And although I do worked while wearing a soft cervical collar that allowed earn a bit more these days, believe me, Bernie Madoff me to perform sensory tricks to convince myself my never solicited me for investment opportunities. body was aligned and not twitching and twisting.

Ultimately I set aside my artistic dreams for a more After a while, however, that approach stopped working. “practical” reality of mastering the science and art of While I thought I was doing a terrific acting job (perhaps critical care nursing. Part of me was fascinated by some even worthy of a Tony or an Oscar), my patients began of the “big” questions in medical care, like, “What do asking me “What’s wrong with you? Are you in pain? you do when all of the body’s organs start failing? How Should I call a doctor? A nurse?” It was then that I knew do you help people who are truly suffering, without the jig was up—at least in respect to sensory illusions. resorting to Jack Kevorkian measures?” Solving analyti- cal problems in a humane fashion seemed (and still So what was next for me? Retirement at age 30 was not seems) far more rewarding than photographing magnifi- an option, so I’ve figured out a way to continue doing cent images—although I still find tremendous pleasure what I love, despite my pain and my drugs and my brain in stealing away and capturing the world through a surgery. Has it all been worth it? Yes. Am I an effective viewfinder. nurse? Ask my patients. Do I wish I could wake up and discover this has only been a long, bad dream? You bet. Oddly enough, my professional journey through medicine intersected with a personal medical condition—one How do I manage? I’ve got my own system figured out. that would remain undiagnosed and untreated for five Most people don’t want to work nights and weekends. I years. At first, doctors said that my facial tics (hemifa- do. Not because the work is easier or quieter or better cial spasms) and strange pains were due to stress or paying, but because working those hours makes me that some hysterical “woman’s disease.” Yes, this was in the much more valuable in a hospital. 21st century. Are you wondering what it’s like to work from 7:00 at Finally I found help at Mount Sinai in New York City night to at least 7:30 in the morning? Let me take you and walked out with a few names and treatments for a with me through a typical shift. disease that affected my head but was not “in my head”. First, if you’re scheduled to start your shift at seven, you I started my nursing career with dysphonia, cervical have to be at the hospital well before then. And if you dystonia and even general dystonia (too bad they didn’t live in New York City and happen to have dystonia, like

ABILITY 37 Illustration by Vuokko Keiski Illustration by Vuokko

I do, you should probably start even earlier. Find me a 2030 hours – I stop in to see patient #1. Her oral packing day without gridlock in this city and I’ll bet there’s is bloody. The bed is bloody. It’s time to call the Ear, Nose either a national disaster or a holiday weekend. and Throat (ENT) residents. The patient’s platelet count is only seven. Luckily, she is sedated (with IV Versed and IV Within the first half hour of our shift, we undergo the Fentanyl) and her vital signs are holding steady. changing of the guard. During this time, the night team leader makes assignments and reports are exchanged. 2050 hours – I see patient #2 and hear gurgling. Since And then the real fun begins. she’s not gargling, it doesn’t take a medical whiz to know that this is not a good sound. (Should you have a medical A TYPICAL SHIFT: background, you might recognize the sound as a signal there is water in the patient’s lungs.) Since this patient has 1930 hours – I have two patients. One is on a ventilator refrained from urinating for most of the day, I’m betting and will likely be bleeding all night since a drug she has she’ll be much, much happier if I suction her. I do. I even been taking for migraines (methotrexate) has eliminated hear a faint “Thank you.” I like this lady. not only her headaches but also her blood’s ability to clot. Her mouth is also filled with packing material. My 2100 hours – The ENT residents have ordered platelets other patient weighs about 300 pounds, has pneumonia, for patient #1. Does that mean I’ll get them ASAP? No. and is in the second stage of lung cancer. How in the It means I now have to call the blood bank and grovel. world am I going to turn her over? “I need them in a hurry.” Their reply of “Yeah, yeah” can be translated as, “You’ll get them when I get to you Despite my (very tall) height, I weigh slightly more than on my list of things-to-do, people-to-see and dinner-to- 100 pounds. I also have wires in my neck that connect a order.” Am I happy? No. Is this stressful? Yes. Does this pacemaker to my brain. These wires are not industrial make my straight hair curl and my dystonia symptoms grade and can snap under pressure. But I’ll deal with go away? Guess. that issue later. I have work to do. 2130 hours – I have got to work on my begging and 1945 hours – I review the computerized order checklists pleading skills, as they do not teach this stuff in nursing to learn what medications are due to my patients at 10 pm. school. The platelets have yet to be delivered and no one has called from the blood bank to say, “Come and 1950 hours – A patient’s family member asks for coffee. get them” (or, even more unlikely, “We’re on our way.”) This would not be a big deal if not for the fact that So I call them again. Were the platelets (a) delayed or walking with a steady, even gait is not my strong suit. (b) forgotten? My hunch is that the order is still sitting With a rather interesting weave (not ever to be confused on the “to do” pile. with that of a runway model), I deliver hot coffee. No spills, no burns, and no “thank you”. 2200 hours – This is not good. My 300-pound patient needs to be turned over for a skin assessment. Science

38 ABILITY can send men to the moon—why can’t it build me an 2300 hours – Here’s the good news: a knight in shining extra arm for multitasking? I add two bags of antibiotics scrubs appears. His name is Stu, and he helps me turn to the patient’s IV. As I do this, it occurs to me that, my 300-pound patient. Here’s the bad news: the patien- although I’ve been on duty for hours, I haven’t had a t’s oxygen level is doing that downward slide. I’m hop- chance to enter anything about my patients into the ing she doesn’t need to be intubated or put on a ventila- computer. I’ll do that now. tor. I call the resident on duty and request a C X-ray order, praying that the patient isn’t retaining fluid. Wait, no I won’t. Alarm bells go off. My other patient’s blood pressure is dropping (“falling through the floor” I am retaining stress. This does not bode well for my would be a more accurate description). This is when all next activity: writing status reports. my years of training and experience pay off. I react automatically. 2320 hours – I start off with a bang but my hands have a mind of their own. I think, “write”. They think,“I’m 2210 hours – I run into the drug room (if you’ve ever cramping up, honey.” The hands win. Writing will have seen someone with dystonia run, you know it’s not like- to come later. ly to rate many style points) and grab a bag of pre- mixed intravenous Levophed. This medication is admin- 2342 hours – Half a miracle: the C X-ray is done. The istered to raise blood pressure—it’s a drug I personally patient’s blood pressure has stabilized. But the blood do not need at this point. My heart is pumping furiously, bank remains a “no show,” and I really have to eat as if it might actually break the sound barrier. I dash something and go to the bathroom. Can we get scrubs back to my patient’s room, hook up the bag, and remain from NASA? Those spacesuits could work just fine. by the patient’s bedside for the next half-hour. 2355 hours – I make an executive decision: I’m going to 2245 hours – The bells are ringing, and all of them are go to the blood bank and get my patient’s platelets. If for me. Has anyone done a study on how many things we needed them before, we really need them now. This a single person can do at the same time? I need to is not an order for pizza. clone myself (and preferably create a version without dystonia). Okay who gets priority, the bedpan-seeker 0010 hours – I’m still hungry. If I don’t sit down for or the hungry patient? No contest. five minutes I may fall over. I look up at the clock and

ABILITY 39 Illustration by Vuokko Keiski Illustration by Vuokko

realize now would be a good time to start all of my more platelets – she is not clotting well. chart work. For most nurses, this part of the job would be slightly more relaxing than the dramas taking place 0140 hours – A patient is dying at the other end of the at the bedsides. With dystonia, however, this part of my unit. He’s only 20 years old. His family is living by the day is a pain in the neck. In fact, it’s more than that: it bedside. No matter how many times I’ve seen this sort causes hand cramping and pain. Fortunately I’ve mas- of drama unfold, it never gets any easier. tered the art of two-fingered-typing. No speed records will be broken tonight. 0210 hours – Now that all the labs and diagnostic tests are completed, Patient #2 (the 300-pound woman) raises 0015 hours – The formerly elusive platelets now find a my blood pressure to a nightly high. Her heart has gone home in Patient #1’s blood stream. Patient #2 doesn’t into a lethal arrhythmia. I run into the room and pound look good, however, and her breathing is labored. I her on the chest, hoping beyond hope to get a normal think she needs more than suctioning. An order goes out rhythm to return. My neck is killing me. The precordial for a diuretic to get rid of some that water. This time we thump works. EKG and complete labs are ordered. But go for something formidable: 40 mgs of IV Lasix. her oxygen level has dropped again. Does she need even more Lasix? 0110 hours – Some of my charting is completed, the platelets have infused, and the Lasix seems to be work- 0240 hours – As I’ve now become quite attuned to ing, but now it’s time to turn over both patients. And I Patient #1’s platelet activity, I feel like celebrating as still haven’t eaten. In the background, I hear a nurse her number goes up from seven to...twenty-four! Just argue with the resident-on-call about an emergency for good measure, the ENT guys order more platelets room admission. What’s new? and some liver function tests. The patient’s blood pressure has remained stable. I finish my computerized There are not enough nurses on duty tonight (are there charting entries. However, due to my dystonia, my arms ever?). We are so short-staffed, in fact, that I already hurt from hanging bags of platelets on a barely-reach- know I won’t be coming off duty in the early morning. able ceiling pole. What do shorter nurses do? In nursing, the mantra is: “If it’s not documented, it’s not done.” Remember my typing skills? I won’t be leav- 0300 hours – The few of us on the unit tonight have ing here for a while. been running for what seems like forever. Forget order- ing take-out dinners, forget eating the healthy snacks 0130 hours – I notice bloody urine coming from Patient that some of us have packed. In between ringing bells #1. Wondering if her liver is failing, I decide to draw her and critical care nursing, we gulp down chips, soft blood and send her lab work off early. She will need drinks and the unhealthiest snacks imaginable. What if a

40 ABILITY dietitian happened to decide to spend the night here? 0547 hours – An alcoholic in withdrawal wanders out of his room. His IVs are in disarray, he has a bloody gown, 0310 hours – The 20 year-old patient dies. I feel sad. his EKG monitor is off and he announces to all of us he His parents are at the bedside. Morgue care is ordered. is ready to leave. Perhaps we should call the bellboy for his luggage and have the front desk prepare his bill. He 0330 hours – My order of platelets is ready. I ask the resists our attempts to cajole him back into bed and then unit clerk to pick it up, then I stop by the pharmacy for hits one of the nurses. We call security and the doctors. some newly-ordered antibiotics. The pharmacist, right This guy ain’t listening to anyone. here in this very large, very busy New York City hospital decides to let us know in no uncertain terms that the 0600 hours – Perfect timing. The head nurse walks pharmacy doesn’t have the variety that we had ordered. down the hallway as the alcoholic makes his way to the Am I in a new episode of The Twilight Zone? What kind nurse’s station. He’s spouting off four-letter words and of pharmacy is this? making comments unsuitable for publication. Where is security? Are they in cahoots with the blood lab people? 0400 hours – Meanwhile, back on the floor, patient I really don’t want to be a punching bag, even if I’m turning commences. What could be worse than trying to beginning to feel like one. If my muscles get any tighter, perform this task alone? Finding the bed and its sur- I may explode. roundings soaked with diarrhea. This is a job for the true angels of nursing: the housekeeping staff. I clean 0610 hours – Security arrives. Using less than spectacular the patient, give her a back rub and a respiratory treat- intervention skills, they tackle the patient. Now what? We ment. Before leaving the room, I do a platelet check. decide to ship him to the psychiatry ward, STAT!

0430 hours – Platelets are done. Will this shift ever end? 0624 hours – I check Patient #2 and discover more diar- Whatever could go wrong has already happened—or so rhea—the type of diarrhea that irritates skin and is I think. induced by antibiotics. To make matters worse, the 300- pound lady can’t breathe when she’s in a prone position. Also, my feet hurt. Note to self (and to other would-be Getting her out of her bed is impossible, especially since nurses with dystonia): clogs might as well be three-inch I only weigh 115 lbs. I call my knight in scrubs, Stu, and heels. A new emergency room admission arrives on the we clean the patient up once again. Now I do the “uh oh” unit. The few staff who are left standing all help the check. Are my neck wires still intact? Yes. I can exhale. patient settle in. We just want to sit down and go home. 0645 hours – I go back to the charts and enter final vital 0445 hours – Some of the routine things that nurses do signs. I also need to compute data such as intake and are no longer easy for me to accomplish without help. outtake of fluids. Have you ever had to estimate the Night nurses are responsible for exchanging old IV amount of diarrhea produced by a patient? I must have missed this lecture in nursing school. tubes for new ones. This used to be a non-event, but now I can’t open the packaging without using scissors 0710 hours – Patient #1 needs extra IV potassium. I or a clamp or a helping hand. It’s frustrating. grab a bag from the drug room and hang it on the IV pole. The day shift staff begins arriving. I actually have 0510 hours – A minor miracle: my paperwork is up-to- a minute to swallow a dose of my medication, relieving date and there are only two more hours left to this awful my dystonia spasms. night. 0726 hours – Before giving a verbal report to the day 0522 hours – A colleague has trouble inserting an IV. I shift, I review any last minute orders to make sure noth- offer to help. Even though I am unable to turn my head ing was missed. Nothing was. the “right way” anymore, I can do IVs by instinct. With dystonia, you learn to make accommodations and work 0745 hours – Shift over. I can relax. At least until around physical limitations. Here’s my secret: I usually tomorrow. Scalp pain erupts. Neck twisting and turning rearrange the patient’s room so that everything is in my begins. I just want to sleep. But I wouldn’t trade my job line of sight. for anything. Nursing with a movement disorder is exciting, rewarding and absolutely do-able! There’s another thing of which I need constantly to be aware since I went through DBS treatment: electromag- by Beka Serdans, RN, MS, NP netic interference. All those security devices may be great Beka is an intensive care unit traveling nurse for the hospital, but they cause havoc on a pacemaker— for American Mobile Nurses and mine goes to my brain rather than to my heart. This is, among other things, anxiety-producing so my neuro- dystoniasociety.org surgeon has me take a mild dose of Klonopin to reduce dystonia-foundation.org stress. Did I remember to take it this morning? No. I will pay for that oversight on the bumpy bus ride home.

ABILITY 41 Photo by: Nancy Villere - CrushPhotoStudios.com Photo by: Nancy Villere

42 ABILITY ith a career spanning more than 30 years, actor Alfred Molina’s colossal talent has earned him Wworldwide acclaim and memorable roles in films as diverse as Chocolat, Frida, An Education and Spider- Man 2. Molina’s latest venture brings his talents to the small screen, where he plays Deputy District Attorney Ricardo Morales in NBC’s Law & Order: Los Angeles. At his home in West Hollywood, Molina met with Law & Order co-star (and newly minted ABILITY editor!) Regina Hall, as well as ABILITY’s Chet Cooper, to discuss his career, education and the triumphant spirit of Joseph Kibler, a 21 year-old Auto Immune Deficiency Syndrome (AIDS) survivor whom Moli- na has come to call his friend.

Chet Cooper: Congratulations on your new series.

Alfred Molina: Thank you!

Cooper: Give me a little of your background. How did you get into acting?

ABILITY 43 Molina: It’s the usual route. I went from secondary school no more than 20 lines long—a poem that you like, a to high school to drama school, and I graduated in 1974. poem that you appreciate. Be prepared to read it to the class and discuss why this poem is of interest to you. Cooper: So you knew you wanted to perform, even while This was part of the course assessment, so it was quite in school? an important deal.

Molina: Oh, yeah, I always knew. According to my Everybody came in with their poems, but I cheated mother, I was nine years old when I first said I wanted slightly, as I was rehearsing a production of The Taming to be an actor. But I can’t imagine I really knew what I of the Shrew at the time. So I came in with a sonnet I’d was talking about, in terms of what it involved. I just memorized, and I got up there and the actor in me just started doing school plays. My parents weren’t terribly couldn’t resist this moment. I started reading and after supportive, not because they were against it, but because two lines, I put it down. I had memorized it. they just didn’t get it, really. So they were kind of like, “Oh, yeah, good, sure.” I could see them all, the whole class, and all the girls were giving me that look. And I thought, “I’m in. I’m so Fortunately when I was about 12 I had a teacher at in here.” And I can remember the feeling. “This is how school named Martin who became something of a men- you do it. This is how you do it!” (laughter) Because I’d tor to me. He was the first person who really took my tried everything else before that. I’d tried the comedy acting seriously, and in a very practical way. He didn’t route, that didn’t work. I’d tried to look cool, that didn’t just go, “Very good, young man, very good, best of work. I’d tried the silent treatment, that didn’t suit me. luck.” He said, “Okay, if that’s what you want to do, There was no point in trying to impress the girls with then you have to do this, this, this and this. You have to anything athletic or academic. That was just not going read this, this, this and this. You have to think about to happen for me. this, this, this and this. And if you don’t, you’re wasting your time.” Hall: So you went the heart route?

And he gave me a challenge. He said, “If you’re serious, Molina: I went the heart route. And it worked. I will do everything I can to help you. If I see for one moment that you’re not serious, I will wash my hands of Hall: See, that’s when the women start acting like this: you and you will never be able to ask me again.” I “He is just amazing!” Suddenly we don’t even like who agreed to that, and I had a friend for life. We’re still we’re with anymore. “You know what? I’ll tell you what friends. He’s retired now. I can’t stand about my guy!” (laughter) “He never reads poetry, ever!” Anyway, Martin gave me books to read, stuff to look at, told me what to get. He was fantastic. I did school plays Molina: But the thing was, I’d memorized the poem! he directed. He started a drama club that I went to on That’s what did it. Anyway, around that time, I started Wednesday nights at school. I was there every night, working. I left drama school in ‘75, and I started work- without fail. All the geeks and nerds turned out for the ing. My route has been pretty standard, really. There drama club—all the kids who weren’t good at sports wasn’t some great break-out role early on. I just worked. and weren’t terribly popular with the girls’ school. Cooper: You weren’t sitting on a barstool and somebody Regina Hall: You were at an all-boys’ school? walked by and said—?

Molina: I was at the boys’ school, and there was a girls’ Molina: What did somebody call it? The Swabs drug- school next door. As we got up to the lower-sixth and store routine? That’s not what happened to me at all. upper-sixth form, we then started having classes in the other school. So, in my last two years, I was in the girls’ Cooper: Have you had any actual “job” jobs? school for economic history and English literature. That’s when I learned that girls quite like the sensitive Molina: I had some job jobs when I was at drama boy. They dig sensitive. I got that. (laughter) And that school, when I was studying. During my first year I had was the advantage I had on the other boys. In my last a couple of job jobs. I worked as a waiter for a while: two years in high school, I dated quite successfully. For the usual story. And I also worked as a hospital porter. being one of the nerdy kids who wasn’t very good at In America you call that an orderly. I worked as a hospi- anything but acting in school plays, I dated pretty well, tal porter in a geriatric hospital for a couple of months, and aimed pretty high up the food chain. and I actually enjoyed it. It was really interesting. I enjoyed all those old biddies. They were great fun. The Hall: We love sensitive Fred. worst part was that we were responsible for taking any of the cadavers down from the wards to the mortuary. Molina: I’ll never forget. I was 16 or 17, and I was taking a poetry class. The assignment was, bring in a poem, Cooper: People who had died?

44 ABILITY Molina, with Law & Order: Los Angeles co-star Regina Hall, on the set of their new NBC drama series.

Molina: Yeah. But the nurses wrapped them all up. We either pass it on or leave it behind? just had to transport the bodies and do the paperwork. But overall I enjoyed that job. I met people. I felt in I don’t need to teach for a living. I make a nice living, so I some small way that I was helping. And the other guys can do this for nothing and for fun. It can be as much fun with whom I worked were an interesting bunch of peo- for me, hopefully, as it will be instructive or interesting for ple: young guys, older guys. And of course, I was at the the students. I’ve been teaching for about 20 years, and it age at which every experience was brand new, so I had a happened almost by accident. I had been asked by the sense that this sort of thing could be exciting. And I also dean of my drama school to fill in for a teacher who had knew that it was a temporary job, so it wasn’t going to pulled out of a two-day class. The school was desperate be my life. and asked me to come in and do some coaching. And I said, “I’ve never done anything like this. I have no idea Cooper: Do you do any work today with nonprofits? what’s going on.” And they said, “Don’t worry, it’s nothing big. They’re just working on their audition pieces and Molina: No, nothing with nonprofits or anything like we just need someone to give the kids a few pointers.” that. The only thing I’ve been doing over the years is teaching for free. So I turned up, and my two students were Joseph Fiennes and a young man called Stuart Bunce, who is Cooper: Is that your way of giving back, after having now a very well-known actor in London. They were just had that influential relationship with a mentor? kids then. Students. I worked with them on a couple of pieces, and I enjoyed that much, much more than I’d Molina: Oh, I don’t think I’m doing for these students expected. I’d thought I was just doing someone a favor, what Martin did for me. I don’t think I’m quite that but it turned out to be incredibly stimulating for me. much of a life-changer. But I do think teaching is a good And these guys were asking me questions, and I was way of giving something back. I’m not an academic, so rather happily discovering that I knew the answers. my approach to the work is vocational. But after 35 years of acting, you pick up some stuff and you learn Cooper: Tell us a little bit about how you met Joseph stuff, and what are you going to do with it, other than Kibler.

ABILITY 45 Molina: I took part in the Los Angeles AIDS Walk, the walk, about AIDS?” So I met Joe. He’s a very smart, maybe 14 years ago, with a group of friends. It was a lot lively, funny young guy, and we talked about everything of fun: a big day, lots of flags, people in costume, just as under the sun. We talked about him the least of all. it was this year. I’d never gotten involved in it in subse- quent years, apart from sending money, because I’m often Cooper: Did you win? away, working. So I suppose recently part of my process of coming back home, as it were, is to get involved again Molina: (laughs) Sadly, because he walks so slowly, Joe with things that I did before I was traveling all the time. has to walk last, because the organizers can’t take the risk of him starting at the top or being in the middle. This year, as the day of the walk approached, our make- People like to speed-walk, and many people use the up artist on Law & Order mentioned it. I started writing AIDS Walk as a workout. The possibility of Joe getting out a check, just to make a small donation, and suddenly knocked over would have been terrible, because he can’t I said, “I could do the walk this year! It’s next Sunday.” get up on his own. So we started walking as the main Then I got an e-mail from a young man, a film student, body of the Walk had already departed. But it was great. who has been making a documentary over the last year or so with a young man called Joseph Kibler. Cooper: Do you know if Joe went through a specific therapy program? Joe is about 21 now and is studying to be a digital film editor. Joe was born with AIDS—his mother was infect- Molina: I don’t know what Joe’s regime has been in the ed by his father, though she was ignorant of that fact past, but I do know that for the purposes of the Walk when she was pregnant. and for the purposes of the documentary, he was on a very strict regime for which he was walking two, two- Cooper: Are Joe’s parents still alive? and-a-half hours a day. He was getting massages, he was working with a trainer, stretching. He has very lim- Molina: His mother is. She’s been living with AIDS all ited musculature in his legs, so he has to work really this time and seems to be managing pretty well. But the hard—much harder than you or I would—because of additional complication of Joe’s infection was that he sheer lack of density of muscle. was born paraplegic, without the use of his legs. And he was not given a very long time to live. The knowledge Cooper: And once the muscles atrophy like that— that we had about AIDS 21 years ago is nowhere near what it is today. The scale and the range of drugs and Molina: The fact that Joe can actually support himself the cocktails was very experimental 21 years ago. So I on his legs is quite a feat. He’s not “able” in the sense don’t think any doctor or any specialist, such as they that he can trot around. He does spend part of his day in were then, would have given Joe much of a chance. a wheelchair. But the fact that Joe could get himself together for the Walk to show that AIDS can be livable But Joe, being the man he is, persevered, went to is impressive on its own. school, and is doing very, very well. Although his prog- nosis at the time was that he would never walk, because Hall: What do you most remember from your experience his legs were completely withered, he refused to accept at the Walk? that. He started working very hard to get his legs. He graduated to a wheelchair and then to walking with Molina: At one point, towards the end of the Walk, I crutches. Today he spends part of his time in a wheel- asked Joe about his dad. I learned his father had been a chair and works really hard—two hours a day, every day junkie and had contracted AIDS through use of dirty of the year—walking around the sports track near where needles. Joe started telling me about his relationship he lives, just to keep his legs working. He did the AIDS with his dad, and about the people Joe had been inter- Walk with the use of a cane. viewing on behalf of the documentary—people living with AIDS. Hall: How many miles was the Walk? He started telling me about all kinds of people and all Molina: Just under seven. Not a long walk by arctic dis- kinds of backgrounds, all kinds of reactions, all kinds of covery standards or anything like that, but for someone states of mind in respect to AIDS. There are people who like Joe it’s a big one. And he’s been doing that walk are embracing it, people who are in denial, people who every year for some time now. are deeply, deeply angry because they contracted it, people who are really almost careless about their condition. Cooper: And you walked with him? And there was one person Joe had interviewed who had really upset him: someone who was so depressed with Molina: I did. Mark Bashen, who is making a documen- life he had decided deliberately to contract AIDS in tary on Joe, said to me, “Seeing as you’re doing AIDS order to die. Walk anyway, would you be interested in walking with Joe so we could film you and Joe in conversation about When Joe started telling me that person’s story, I could

46 ABILITY see he was really upset. Upset that anyone could want to do something like that, that anyone could actually seek that out. And I asked Joe, “Does what happened to you make you angry?” And he said, and I know he meant it, “If I could have all this all over again, I wouldn’t change a thing.” That just knocked me for six.

I was stunned. If Joe were given the choice never to have had this illness, he - CrushPhotoStudios.com Photo by: Nancy Villere wouldn’t change the way things are— regardless of all of the stuff AIDS has denied him—because the disease has, in some way, defined him. It’s defined his life and has given him, I presume, some focus or purpose or some sense of—

Hall: A gift?

Molina: Yeah, some gift. Most of us never think of disease as a gift. No one ever thinks of being ill as something that can do him good, on any level, physical or spiritual.

Hall: The gift is perspective.

Molina: But I think in some way it’s unique to Joe. I think his perspective is that this life he’s been given isn’t something to be dismissed or despised. It’s what he is.

I asked Joe, “Were you ever angry? Did you ever reach a point where you were screaming in the night, wondering, ‘Why me?’” I suspect that is what I would be doing. But Joe made an interesting point. He said, “The only question you ask yourself is, ‘Why not me?’ That’s the only question worth asking.”

Just on a philosophical level, that’s quite a big idea to get hold of, sitting here as we are with our health and comfort and discussing it objectively. It’s an interesting question, isn’t it? But when Exhausted after the AIDS you’re living with that illness every Walk, Joseph Kibler embraces day, that’s a big, big thing. new friend Molina.

Hall: Unusual, to be 21 and have that Cooper: It stuck with you. kind of wisdom. Molina: I’ve thought about it a great deal. It’s an eye- Molina: Yeah. His generosity really hit me. And I found opener, really. If you’re brave enough and strong myself getting very welled up. I found it a little bit hard to talk to him after that for a while, because it was such enough to seriously believe in that philosophy, without a huge thought, such a huge idea. it being some kind of self-aggrandizing palliative, that empowers you in the most extraordinary way. I’ve never been really, really ill. I’ve broken a toe, I’ve

ABILITY 47 had influenza, I’ve gotten double pneumonia that put on. We don’t moralize about people’s illnesses. We mor- me in bed for a week. I hope those to be the worst of my alize about their responses to their diseases, but we don’t problems. But when you’re living with something as say, “You’re a bad person because you’ve got cancer.” So hugely emphatic as AIDS, or with a really serious can- we need to cease moralization about AIDS. cer or whatever it is, to somehow embrace it and say, “Why not me?” has got to be monumental. Unlike the other big diseases, AIDS still has a political, social, and moral dimension to it. If the largest affected Hall: Especially when you’ve done nothing of your own demographic were that of white, middle-aged men, this action to acquire the condition. disease would have a s--tload of money thrown at it. But as long as it’s predominantly targeting gays and Molina: I’ve met people who have had cancer, but blacks and Latinos and weirdos, then we’re fine. That they’d smoked all their lives, or they’d lived in a way kind of ignorance that needs to be dealt with. I don’t that, no matter how generous you are, causes you to think anyone can really get away with saying, “AIDS? think, “Well, you kind of asked for it. You were flirting What’s that?” Those days are over. We’re way beyond with disaster.” If you’ve been smoking two packs a day that. Now the subtleties of the disease need to be and suddenly your doctor says, “You’ve got to quit addressed. because you’ve got lung cancer,” I suppose maybe there’s a part of your brain that goes, “Well, I guess it Hall: I’m like, “You know what? I protect myself, so it’s was inevitable.” But if you’ve done nothing wrong, if not really a disease that affects me.” But truly, if it you’ve done nothing to warrant this condition or merit it affects one of us, it affects all of us. or earn it, that must be a different feeling. Molina: I remember hearing stories in the ‘80s about Hall: Since AIDS has now been around for decades, AIDS—or SIDS, I think it was called at one time. The sometimes it seems that it’s not as publicly impactful idea was that it was affecting all of these young gay guys today as it was when it was a new disease. in San Francisco. They were all dropping like nine-pins. They were getting it from having sex with each other, Molina: And I find it amazing that people still think of it from this and from that. Even amongst sensible, intelli- as a gay disease. gent, upright people, I remember hearing, “It’s the gays. It’s a ghetto disease.” Sometimes we seem not to have Hall: Its largest demographic is actually black women moved on from that mindset. And that worries me. from the ages of 18 to 35. Babies get AIDS through no fault of their own.

Molina: It’s also getting higher among Latino men. People were getting it through transfusions. There’s more control over British people donating blood in Hall: Is it your hope that this documentary, this Walk, America, because of mad cow disease, than there are will help awaken people who have gotten too comfort- controls for checking people for AIDS. I can’t be a able with the existence of AIDS? Get more people to blood donor in this country because I’m British. realize it’s a real threat to them? Hall: I think too often we see somebody like Magic John- Molina: None of us can be above it. When AIDS ceased son and we think, “Oh, you can live with AIDS.” He to be a headline, it became easier to, in a sense, dismiss it looks normal and healthy. There’s still so much ignorance from the forefront of our minds—if it’s not in the head- about the disease, the drugs, how they all affect you. And lines, it must be contained. You hear one or two stories of because AIDS is no longer a priority in the news, I think someone successfully living with AIDS, coping with it, there’s a generation that doesn’t find it as dangerous as it dealing with it, and you hear about some advance in the really is, because it’s not really talked about. treatment of AIDS. Then you go, “Oh, I can relax about that one. Let’s worry about adult-onset diabetes now.” Molina: There are definitely advances being made, however. Joe told me, for instance, that when he was Whatever is grabbing the headlines is our preoccupa- younger he was on 25 different drugs a day. And no tion. But the truth is, if AIDS is here to stay, then we one really knew what the side effects of those drugs need to think about AIDS in the same way in which we were, what the interactive effects were. Now he’s down think about cancer, about autism. It’s a condition of to five meds a day. That’s an amazing advance when humanity. It’s not just some weird thing that’s here to you think of the quality of people’s lives. But the dis- visit us for a while and then will clear up and go away. ease is still there. It’s a bona fide disease. There can be no moral judgment placed on it. We don’t morally judge people when they Not all of us can be experts, doctors, scientists, researchers. get cancer, unless they’ve kind of asked for it. Not all of us can discover the cure for something. But if as a community we’re aware, if we’re more aware of the We can moralize about people smoking cigarettes, but conditions, the causes, the impact, the results, the effects until smoking is made illegal, nobody has a leg to stand of all these things—things that people are living with

48 ABILITY Photo by: Nancy Villere CrushPhotoStudios.com

Molina sets the scene for ABILITY’s Chet Cooper and Regina Hall.

constantly—I think it just helps us to reach out and not AIDS. In the ‘80s it was, don’t shake hands with some- be frightened. one with AIDS. Don’t let their sweat get on you!

Hall: Does Joe live on his own? Hall: There was a lot of ignorance.

Molina: No, he lives with about four roommates, here in Molina: Oh, unbelievable. Joe told me about some of LA They were all students at the LA film school togeth- the stuff he has to deal with when he goes swimming, er, and I think two of them still are. They’re all very for instance. Just to go swimming in a public pool. close. They all help him, so it’s as if he’s got a family. Word gets out that this boy has AIDS and people are He’s well looked after. pulling their kids out of the water, even today. And you think, “That doesn’t help anybody.” The focus of his movie deals with him interviewing other people living with AIDS, as well as with his preparations We learn this stuff. We’re not born with it. I remember for the Walk. He really, really worked hard. Mayor Vil- when I was a kid, I was with my mother, and we saw a laraigosa inaugurated the Walk this year, and Joe tried to guy in the street who had clearly had a terrible injury, get in line to talk with him. Joe didn’t succeed, however, maybe as a result of the war. We saw this man was very, and he came back to us and he said, “I’ve just been very badly deformed. One whole side of his face looked caved in, like it was missing. He had a big coat on, with snubbed by the mayor.” I said, “Did you get it on film?” a collar, and it was clear that maybe he had no jaw. It And he went, “Oh, yeah!” (laughter) was as if one whole side of him were torn away.

You know, it took me ages and ages to understand you He was walking towards us and, in my youthful igno- don’t have to be afraid of someone else’s disease. The rance, I just stopped and stared at this man. I remember disease doesn’t define the person. It might impose limi- my mother just yanking me out of the way, saying, tations, it might leave someone in bed or stuck in the “Don’t look at him. Don’t look at him!” As if somehow house. It might put someone in a home. But it doesn’t I would catch something. And you learn from that change the person. moment. That jogs you, so the next time it happens, you do it for yourself: you look away. We have to unlearn all I’m a bit ashamed of myself in many ways, because it of that stuff as we get older. Some people never do. took me a long, long time to learn this truth. I had all the usual panics about, how close do I get to people with ill- walkondocumentary.com (Joseph Kibler’s film) nesses? What kind of risks am I running? And there’s a lot nbc.com/law-and-order-los-angeles of fear-mongering that goes on, particularly in respect to

ABILITY 49 Motorcyclist Malcolm Smith cruises to victory at the Baja 1000. Smith, who today, manages his own motorsports dealership, is a six-time champion of the race.

eeting up with Malcolm Smith stands as one Jersey to the motorcycle mecca of sunny California with of the most unique interviewing experiences a dream of racing motocross. (And after that? Well, Mof my life. Seated in the large showroom of maybe then I’d start thinking about college.) Upon arriv- Malcolm Smith Motorsports in Riverside, CA, I find ing in Southern California, I tracked down the great Mal- myself mulling over a variety of ways to approach my colm Smith—I was riding Huskys at the time and he was introduction. Do I start off with, “Hey, how have you a major Husky dealer—and informally “auditioned” for been? Long time, no see”? Or maybe, “Hi, I’m with him. Apparently he liked what he saw. He gave me a job. ABILITY Magazine. I’d like to take a minute of your time”? Or what about, “Should I have set an appoint- It might not sound like much on paper, but at the time, it ment?” was the biggest opportunity of my life—a circumstance that many back home couldn’t even believe. While out Yes, this is indeed a surprise visit. My thoughts rush upon chasing my dream, I not only got to meet a legend in the me, awkward and stumbling. But why should I be ner- field but had also been hired to be his salesperson. I vous? After all, I’ve had sit-downs with plenty of famous, seemed to have fallen into a lucky wormhole. My new high-powered people. And yes, Malcolm Smith is boss would power my racing dreams, I was certain, and famous. Famous for his many bike races, and famous for maybe someday soon I’d be racing my Husky with fel- winning. Most of all, he’s famous for On Any Sunday, a low rider Steve McQueen. documentary in which he starred with Steve McQueen. That film has developed something of a cult following. That’s not exactly how it played out. In fact, Malcolm fired me after my first day on the job. As high as I had Today Malcolm Smith is grey-haired and nearing seven- felt just a day earlier, I suddenly felt just as low. I gath- ty. But years ago, kids like me marveled at his skill, ered myself up and changed my plans. Instead of pursu- speed and charm. Fans of all ages were wowed by his ing motorcycling, I went to college—a decision that led bravery and strength. But my connection to this icon is me to writing about my encounter with Malcolm Smith of a different kind altogether. In short, Malcolm Smith in this magazine I created 20 years ago. changed my life. And today, meeting with Malcolm again after all these As a teenager, I moved from the Pine Barrens of New years, I find that I am nervous. Though Malcolm is

50 ABILITY Malcolm with country- western singer and fellow rider Malcolm’s personal bike museum in Riverside, CA. Lyle Lovett.

Malcolm (left) chats with actor Steve McQueen (center) during filming of On Any Sunday.

older now, he still has that memorable handshake, with I imagine this is about the strangest thing Malcolm hands like a vice from years of hard riding. I’ve started could have shown me. But then I find his little aside is riding again, too—but my handshake is more like that of connected to a deeper meaning: in 1995, Malcolm and a marshmallow. his motorcycle buddies began taking trips to Mexico, where they started a non-profit and built an orphanage Malcolm and I sit in his office, where I share my story. called El Oasis. The bay near that orphanage happens to He says, “I remember your face, and I know the sales- be the feeding area for about 20 whale sharks. person who was working at that time, but I don’t remember that.” You see, Malcolm had fired me the first Malcolm and I talk about his trembling hand. Diagnosed day on the job because his one and only salesman had with Parkinson’s disease eight years ago, Malcolm tells quit and then had returned. Malcolm could only afford me he went to Europe for stem-cell therapy but found it to keep one salesman at that time. I had to go. a waste of time and money. I ask if he has ever thought about deep brain stimulation (DBS), a procedure in Today Malcolm Smith Motorsports has over 50 employ- which a probe is inserted into the patient’s brain, allow- ees. Before the financial slow-down, it had boasted ing doctors to map out areas of concern. I’ve seen first- close to twice as many. His eyes gleam as he tells me hand evidence of the surgery’s efficacy. Malcolm says about his latest adventure: “This is the newest thing I he doesn’t know if he’s ready for that just yet. (See pg. ride,” he says. With a smile, he shows me a video on his 54 for more information on Parkinson) iPad. I can’t quite figure out what I’m seeing—and I cer- tainly don’t understand what he means by ‘ride.’ I see The more time Malcolm and I spend together, just talk- what looks like a whale. But where’s the motorcycle? ing, the more aware I become that he hasn’t taken his medication. His hand begins twitching. I mention this to “Watch,” he says. “That’s me. And those are my kids. him and learn his medications are in his car. I urge Mal- On a shark.” Malcolm points to the screen. “Largest fish colm to go out and get them. “I do well with the meds,” in the world. It’s called a whale shark. It’s a filter feed- he says with a half-smile, “but I don’t always take them er.” The underwater footage shows Malcolm and his on time.” I suspect his doctor would not approve of this adult children, each equipped with snorkels, holding self-guided medication schedule. onto the dorsal and tail of a huge sea creature.

ABILITY 51 Between 1966 and 1976 Malcolm Smith won eight gold medals in the Interna- tional Six Day Trials, the European cross-country event considered by many to be the Olympics of motorcycling.

Because numerous people angle to talk to Malcolm as his father, and his own son. we walk through his shop, it takes almost 30 minutes for us to leave. On our walk, Malcolm decides to share In 1998 Malcolm Smith was inducted into the Motorcy- some of his family background. His father met his cle Hall of Fame. Today he oversees his motorcycle mother while traveling in Alaska, he says with a glow in dealership and conducts special invitation-only, off-road his eyes. “The two hiked up a mountain together and rides in Mexico and South America. On the television talked for a long time. A day later, they got married. program National Geographic Explorer, Malcolm When I was born, my mom was 33 and my dad was 81”. Smith was profiled with singer Lyle Lovett on a motorcycle ride in Chile. Parkinson’s hasn’t slowed down Malcolm’s riding one bit, and he still finds time to give After Malcolm’s father had died, Malcolm’s mother talks about the early days of off-road riding and preser- reconnected with her first love, and they married. vation of riding areas. If you ever want to join Malcolm Malcolm grew up with his step-father. Was there a for a ride, there’s only one condition: no wimps. After chance that Malcolm’s step-father might have actual- all, he’s still a legend. ly been his father? Malcolm says no. The family malcolmsmith.com resemblance is too strong, he says, between himself,

52 ABILITY ABILITY 53 alteration is the loss or failure of a special collection of cells in the brain that produce dopamine, a chemical messenger. Many of the neurons that communicate by way of dopamine are involved in movement. Norepi- nephrine—a neurotransmitter involved with the auto- nomic part of the nervous system—is also deficient in the brains of PD patients, a fact that can influence diges- tion and blood pressure regulation. n 1817, English apothecary James Parkinson documented a “shaking palsy” in some of his patients. I Despite the unanswered questions and harsh symptoms Today the disease that bears his name remains a sobering that remain aligned with Parkinson’s disease, medica- medical reality: approximately one million Americans tions for the condition can yield a dramatic and positive suffer from Parkinson’s disease (PD) and about 50,000 new cases are diagnosed each year. effect. The most effective of these medications, levodopa, is a natural substance that (when taken as a pill) As it is a neurodegenerative disease, PD is a progressive converts to dopamine inside the brain. However, this condition. It results from deterioration in an area of the drug has to be combined with a drug called carbidopa brain known as the substantia nigra, a region of cells that prevents levodopa’s conversion to dopamine before that control movement. The primary job of these cells is it reaches the brain. The combination of these drugs— to produce a substance known as dopamine—one of known as Sinemet—helps a patient avoid potential side many substances called “neurotransmitters” that facili- effects, particularly nausea. tate communication between brain cells (neurons). After prolonged use of the drug, however, the effects of No scan or lab test is available by which to diagnose Sinemet tend to wear off at an accelerated rate. Further PD, leaving the condition only identifiable by way of complicating matters, the Sinemet dosage sometimes has its symptoms and physical manifestations. The disease to be lowered to reduce side effects. Both of these issues begins insidiously and progresses gradually, often lead to poorer control of the symptoms of PD. emerging as a barely detectable hand tremor. This might be followed by loss of facial expression, difficul- Drugs that mimic the effects of dopamine, called ty initiating movement, mumbled speech, or a lack of dopamine agonists, are also used in the treatment of arm-swinging while walking. In advanced stages of Parkinson’s disease, but they tend to be less effective PD, dementia may manifest. than those drugs previously mentioned. On the other hand, dopamine agonists do not tend to wear off as Additional problems known to affect people with PD quickly and can be used to help smooth out the waxing include sleep disturbances, difficulty swallowing and and waning of Sinemet. chewing, problems with urination, constipation, and loss of libido. It should be noted that several other diseases Medications used in the treatment of PD have many are comprised of some of these symptoms and can easily be confused with PD. For example, multiple symp- unpleasant side-effects. These include hallucinations, toms of Alzheimer’s disease overlap those of PD. involuntary jerking of the extremities, drowsiness, nausea, and a sudden drop in blood pressure upon standing. Though the precise cause of PD remains unknown, In addition to use of medications, surgery can play a role research has raised the likelihood that a variety of fac- in treatment of PD symptoms. Typically, however, such tors may be involved. Changes in a person’s genes, measures are reserved for patients who suffer disabling either by way of inherited or environmental factors, side effects from medications or who experience poor are suspected. Toxins or certain viruses in a person’s control of their symptoms. environment may also trigger signs of the disease. Until recently, surgical treatment of PD had involved Certain risk factors for developing Parkinson’s disease placement of a small probe into a particular area of the have also been identified. People with family members brain, destroying that area and resulting in diminished who manifest the disease have increased risk for PD, tremor and improved movement. Lately, however, use of although not to a great extent. Research indicates men a small electrode in a different area of the brain has are more likely to develop the condition than are proven more effective. During surgery, this electrode is women, and the disease seldom occurs in anyone before connected to a continuous stimulator that is permanently late middle-age. Constant exposure to certain herbicides implanted under the patient’s skin. Like any surgery, this and pesticides has been associated with a greater risk of procedure (called Deep Brain Stimulation) has risks, Parkinson’s disease. such as infection or brain injury caused by bleeding or stroke. Such outcomes, however, are rare. Changes in brain chemistry are characteristic of Parkin- son’s disease patients. One noteworthy neurological parkinson.org

54 ABILITY ABILITY 55 riginally from Warrington, England, Victoria young to understand what her life was like, let alone to Taylor lives in South West Wales with her hus- empathize with how she felt. Adele-Caitlin felt as if no Oband, Robert, and their two children, Christo- one understood her. pher and Adele-Caitlin. Robert and Victoria had been happily married for seven years when Robert was unex- Concerned for her daughter, Victoria looked for books pectedly diagnosed with intracranial hypertension (IH), that might help Adele-Caitlin cope with the family’s cir- a neurological disorder in which the pressure of cere- cumstances, but her efforts proved fruitless. At Adele- brospinal fluid within the skull is too high. The disease Caitlin’s urging, Victoria decided she herself would forced Robert to end his successful teaching career. write a book for her daughter. Caitlin’s Wish was born.

Because Adele-Caitlin was only two years old at the With the development of Caitlin’s Wish, Victoria set out time of her father’s diagnosis, she had little memory of to create a story that would aid children who are too how Robert had been prior to his illness. It wasn’t until young to access support networks for young carers of she had started school that Adele-Caitlin began to real- people with IH. She hopes that her work will prompt ize her dad wasn’t like other dads. children to draw strength from positive elements in their lives, instead of dwelling on the negative. Adele-Caitlin felt confused, sad, angry and isolated. Why did her dad have to be ill? Her friends were too What follows are excerpts from Caitlin’s Wish.

56 ABILITY “HOME SWEET HOME” laughter. It was a great place to be! Chris and Caitlin always had lots of fun playing games with the other Our story begins in a small village in the Welsh country- children, and they loved it! They were never bored or side. It was a friendly place where everyone knew each lonely. other. It was a very old village made up of stone cottages with big, oak beams inside. Most of the cottages Chris and Caitlin’s dad worked away from home during still had wood-burning stoves and roaring coal fires the week, but once the weekend arrived he spent all his which kept you snug and warm on a cold winter’s night. time with them. If the weather was nice, they would go on camping trips in the mountains. They spent their Behind the cottages there was a large meadow which led days lazing by the river catching fish, or cycling through onto the mountainside. The meadow was covered in the countryside. Sometimes Dad would take them boat- beautiful wildflowers which were all of the colours of ing on the lake, or even canoeing. It was so much fun! the rainbow. All the children loved to run and play in the meadow. If the family didn’t go away for the weekend, Dad would take Caitlin and Chris on long walks in the One such child was a little girl called Caitlin. She was forests and woodlands near their home. Dad loved small for her age, with pretty, hazel-green eyes and teaching the children all about the animals and birds. beautiful brown hair which fell across her face so she One such time springs to mind. could hide behind it if she wanted to. “DAD’S ADVENTURE” Caitlin had a wicked sense of humour and was always making people laugh. She could make even the grumpi- Dad had just finished helping the children with their est person smile. homework, and it was a beautiful day outside. The April sunshine was streaming through the kitchen window as Caitlin’s big brother was called Chris. He had bright they all closed their books and got up from the table. blue eyes and short blond hair which spiked on top of his head (“Like a hedgehog,” Caitlin said). Caitlin and “Okay,” said Dad. “Who wants to go on an adventure?” Chris were the best of friends, as well as being brother and sister. “Ooh! Me, me, me!” replied the children.

Caitlin also had a special friend called Rufus, but Rufus Mum was baking in the kitchen. She turned and smiled. wasn’t a little boy. Oh, no, Rufus was actually a cheeky “Go on then,” she said. “Off you go. It’ll be a while little robin. Caitlin had fed him every single day since before I’m finished here.” he was very small. Over time, Rufus had learned to trust Caitlin and he became her friend. Every day he would “Right, then,” said Dad to the children. “Put your sit on the windowsill and listen while Caitlin told him boots on.” all her news. “Where are we going?” they asked. He never answered back, though. After all, robins can’t talk, can they? “You’ll find out in five minutes,” replied Dad.

Chris and Caitlin’s mum was a childminder during the The children quickly put on their coats and boots and week, so their house was always filled with fun and were out of the door in a flash. They linked arms with

ABILITY 57 their father and chattered merrily as they walked along look like fairies dancing.” the old cart road into the forestry. “Don’t be silly, Daddy,” said Caitlin with her hands on “Okay, let’s play a game,” said Dad. “Who can find her hips. “They are dragonflies. Fairies don’t exist!” clues to guess which animals live in the forest?” “Shh!” said Dad, quickly. “Fairies are real, and they can “I can! Look over there!” Caitlin said, jumping up and hear you! You’ll upset them if you’re not careful!” down, excited. “I can see rabbit holes! That means rab- Caitlin looked down at the floor, not wanting to argue bits live here!” with her dad, but still not believing him. “Come on,” Dad said. “We’ll sit on the riverbank over there. Now sit “You’re right!” said Dad. “Well, aren’t you clever? still and be very quiet.” Look over there, Chris. Can you see them?” They didn’t have to wait long before they saw brown “Oh, yes, I can,” said Chris. “Well done, Caitlin.” speckled fish swimming in the stream. “Wow!” Caitlin exclaimed. She heard a popping sound coming from the As Dad and the children walked farther along the path, water. She looked around to see what it was. Chris suddenly covered his nose and pulled a face, saying, “Urghh. What’s that smell?” What she found looked like a baby lizard. “What is that?” she asked her dad. Dad burst out laughing. “That’s a fox smell,” he said. “They mark their territory with their scent.” “That’s a newt,” he said. “The popping sound you heard was it coming up out of the water to breathe.” “Urghh. That’s revolting,” said Chris. “CAITLIN’S LOST SMILE” “That’s nature,” said Dad, still laughing. “Let’s go and have a look what we can see in the stream, shall we?” It started slowly, with Dad being ill when he came home on the weekends. Everyone just thought that he’d been They turned off the cart road and started to walk across working too hard. the meadow. “Ah, I never get tired of this view,” Dad said as he looked at the mountains in the distance. Dad didn’t have the energy to do any activities with Chris and Caitlin anymore. He spent most of his time asleep in “I know. It’s lovely, isn’t it?” said Chris. bed. It was getting worse every time he came home.

The April sunshine felt warm as Dad and the children Dad wouldn’t go to the doctor though, because he was walked along. The only sounds they could hear were of convinced there was nothing to worry about. He just birds singing in the trees. Nature was finally waking up thought he had been working too hard. again after the long winter, and the meadow was covered in beautiful spring flowers gently swaying in the breeze. It was only when he took some time off work that Dad realised how ill he was. He began to look very poor and A stream ran alongside the edge of the meadow. As the was rushed into hospital. Chris and Caitlin were terrified family got closer to it, they could see dragonflies skating he might die, and for a while the doctors didn’t know across the top of the water.”Look!” said Dad. “They what was wrong with him. Eventually they worked out

58 ABILITY that Dad had an illness that caused horrible symptoms. IT WAS TOO QUIET! Life would never be the same again. Caitlin hated it! Dad was too ill to work anymore and he was in a lot of pain. Caitlin and Chris felt so lost. Their lives were She wanted life to go back to the way it was before. changing before their eyes and there was nothing they Deep down, though, she knew that was impossible. It was could do to stop it. like being in a nightmare she couldn’t wake up from.

The whole family was angry. “Why us?” they’d ask. On the good days, Dad would spend time with the chil- “Life’s not fair!” dren. They both treasured those moments dearly. On the bad days, though, Dad would sleep nearly all day. The Mum had to give up her job to look after Dad and children had to be quiet so as not to disturb him, which everything in Chris and Caitlin’s lives changed. The children became inseparable, each leaning on the other made life miserable. for support. They both thought no one else could possibly understand how they felt. Occasionally Caitlin’s mum would get upset because their lives had changed so much. Caitlin would give her Mum spent a lot of time talking things through with the mum a cuddle and wipe away her tears. It made her sad children. She explained that Dad was always in pain, to see her mum cry. but that he had good days and bad days. On a good day Dad would not be in as much pain. So on those days She hated it. they would enjoy time together as a family. However on the bad days, Dad would hardly get out of bed, and life Of course Caitlin didn’t tell anyone how sad she felt, would be very difficult. Mum explained that Dad apart from Rufus. She poured her heart out to him. She wouldn’t die from this illness, but that he would be ill trusted him. What could he do though? He was just a lit- from now on. tle robin. He couldn’t change things for her. Could he? Caitlin’s smile was definitely lost. She couldn’t think of Each of the children coped differently. Chris found it anything she had to smile about. She had never felt so easier to adjust than did Caitlin. He was a quiet child sad and alone. who enjoyed studying. However, Caitlin didn’t know that by talking to Rufus Caitlin was a bubbly personality who would sing at the she was actually asking for help. She could never have top of her voice all day long. Because Dad needed rest, dreamed what was about to happen next. Caitlin could still be noisy outside, but she couldn’t be noisy inside the cottage anymore. This was really A percentage of profits from each strange. With Mum being a childminder the cottage had Caitlin’s Wish sold will be donated to: always been noisy—very noisy—with lots of children IH Research Foundation running around. ihrfoundation.org and Crossroads Care Now, it had to be quiet. crossroads.org.uk

ABILITY 59 first group; the neurologist who checked in on me was in the second. Dr. Nick Mills approached my bed after reading my chart. I liked this guy already. He was prepared; he was eager to help. He could read. He even looked at me when he talked. (And not like he was sizing me up to figure out how many payments on his Jaguar I was worth.)

Dr. Mills brought out a stainless steel tuning fork and checked my ability to feel vibrations (all Beach Boys refer- ences aside). He looked into my eyes with that red light gizmo and then...he carefully unwrapped a extremely large safety pin.

“They issue you those diaper pins in medical school?” I asked. He smiled. Then he proceeded to poke me like a baked potato getting ready for the microwave.

“Can you feel this? This? This?”

“No.”

He touched my face, “And this?”

“Yes.”

“And this?” He brushed my left cheek.

“No I can’t feel that.”

He frowned. I was enjoying the game, but decided to cut him a break.“I can’t feel anything there because I had a facelift four years ago,” I said. “And it’s still numb.” I could see the beads of sweat on his forehead retract back into his skin.

“Well,” he said. “You are my first patient up here at the ski resort because he following excerpt is from author Sally Franz’s I’ve just retired. I have never seen a case of this directly, novel Scrambled Leggs: A Snarky Tale of Hospi- but I am going to test for Acute Transverse Myelitis. It’s Ttal Hooey. The author has transverse myelitis, a a one-in-a-million condition. rare neurological disorder of the central nervous system, and became paralyzed within 30 minutes of first feeling “Let’s get an MRI on your spine, around the area where her symptoms. Her novel takes a humorous look at deal- your sensation stops, and see what we can find.” (Here ing with the unexplainable—and also takes some shots is another plus mark for Dr. Nick Mills: he didn’t ask at her experiences with hospital care. me to “hop” off the mattress to go get the MRI. You notice things like that when you are paralyzed, power- “IN THE NICK OF TIME” less and presumably mute and invisible!)

There are people who are simply in the right place at the It was nightfall on Sunday and the orderlies, who were right time and there are people for whom, no matter no doubt vying for the cover of a Hospital Hotties Cal- where they go, time becomes the right time. I’m in the

60 ABILITY endar, came to get me. The “kids” transferred me to a Land ‘o Goshen, you are sweeter than apricot jam on wheelchair and we headed off. Suddenly they pushed buttered cinnamon toast. Did I mention that my mouth open the exit doors and I was thrust into what can only is watering just pretending I am two decades within be described as a Tim-Burton-meets-the-Sugar-Plum- your age range? Fairy experience. “No, I can’t use my legs at all,” I told him. “I can hang For no apparent reason, the MRI machine was in a semi- on with my arms, though.” trailer in the farthest corner of the hospital parking lot. The staff had chopped away a covering of ice—with the “Okay,” he said. “Then here’s what I will do. Let me thickness of Lake Superior in January—to clear the path. lean down to you and embrace you completely.” Snow drifts loomed on either side above us. The night air was crisp, the stars bright. I inhaled; something was And then the rest is kinda fuzzy, but it sorta went like this: different. Oh yeah: no urine-puke-alcohol-latex glove smell. I sucked in as much good air as I could. But “With my hand on the small of your back, let me pull before I could hyperventilate, the chair did a gentle glis- you towards my chest. sade down the narrow path, gaining the momentum of an Olympic bobsled. Put your head on my shoulder, I’m strong, I’m trained, I’m ready. Dudes, I’ll pass on the ol’ Mel Brooks wheelchair- down-the-stairs-and-across-the-parking-lot-into-oncom- I’ll do all the rest. ing-traffic-schtick! “Somebody stop me, please!” It will be safe, ma’am. All you have to do is hang on tight. The MRI workers sequestered in the semi-truck opened a side door four feet above my head. With a wisp of a Once I have you against my body, I am going pick you hand on a computerized remote they sent a flat, steel lift up and lay you down. careening down toward street level. The orderlies caught up with me just before I was about to become Is that all right?” roadkill (or parking lot kill, anyway). The heavy, metal, two-inch-thick platform slammed to earth, hurling ice Dang, if those aren’t lyrics for a Country Western Song, chunks into my hair. I’ll eat my (4X Beaver Stetson) hat! “Is that all right?” Nah, let’s go get a guy from the Grease-o-Rama trucker I was freaked out, which triggered a “private vacation to bar with peanut shell breath and a Grand Canyon butt the Bahamas” (also known as a “hot flash”). Undaunted, crack. He can throw me fireman’s style over his shoul- the orderlies grabbed my chair and tipped it up and over der and slam me onto that cold chunk of stainless the ledge—which, I should mention, had landed the steel…or we could do it your way. width of a dragonfly wing’s from my toes. “Yeah, that’s fine,” I said. I went for a Mona Lisa smile, Someone motioned a “thumbs up”. We ascended the desperately trying to keep my lips from snapping up like four feet at the same rate that JELL-O congeals. Every window shades into a monkey grin. He leaned toward wiggling, jiggling movement stung more than bare-hug- me, smelling of musky pine, and all I could hear was the ging a cactus trimmed with fiberglass. And it was cold. Disney princesses humming in three-part harmony: How cold was it? Ice cream could get freezer burn. “Some Day My Prince Will Come”.

Add “wheelchairs on icy surfaces” to the list of things Mesmerized by the hardest six-pack since somebody left never to take rides in (along with: “ski patrol with the Coors out in the snow, I was transported from my toboggans”, “car with drunk friends”, and “ferris wheels wheelchair to Nirvana and, eventually, to the MRI table. after a jumbo hot dog mit sauerkraut with a cotton candy chaser”). “You’re okay, now. You’re safe and sound,” said my savior. “Okay! You can let go of my neck…now.” And It was very crowded inside the trailer. There was one quicker than you can say “let’s get married”, he disap- boy (and I do mean boy) behind my head and one facing peared. me. On my right was the MRI table. “Can you move from the chair onto the table, ma’am?” I was asked. I blinked and found myself staring into the bland face of a middle-aged nurse who was clearly counting the num- And whoa. Aftershave smelling of a musty giant red- ber of days she had to work before retirement. She wood forest ran up my nostrils just as cornflower blue droned instructions in a nasal whine. Think of Roz’s eyes framed in the black eye lashes the length of butter- voice in “Monsters, Inc.”: fly wings batted near my cheek. Mercy me, I thought. If this guy leans any closer I’ll be in the cardiac unit. “We have to roll you into a tube. You must stay very still. Is that clear?”

ABILITY 61 If I could kick, squirm or as much as wiggle a toe hair, lost? Cure cancer? Close. (i.e. not stay still), this MRI would be a moot point, would it not? In fact, it would be a mute point, since we Oh boy, oh boy, I thought. The next time it passes over wouldn’t be having this discussion. me, I get to become a new person! Quick, who do I want to be? (This was a little like the opening to The That is, if anyone cared to, for a whimsical fancy, read Jetsons, in which Jane gets to pick a new hairstyle, or in the blankey-blankey-blankey (fill in your own blanks if Groundhog Day, except without character evolution.) are an adult or a minor who has already been corrupted) chart! First pass, I could play the piano and sing. Next pass, I could add numbers in my head and do crossword puzzles. “We will be talking to you through an intercom,” the BIDDY BING…Men desired me, women wanted to be woman said. “If you feel yourself panic, just talk to us.” me. CLICK CLACK…Suzy Cheerleader from Ridge- wood High School apologized to me and asked for my Then the bed I was resting on was sucked backwards key to success. (Did I mention my five bestsellers and into the open tube, like the tongue of a giant, man-eating my Grammy for my hit song?) Pong-Bang-a-Bong. plant. “Seymour, I’m hungry!” I passed on the bigger-boobs wish, just in case I hap- The first thing you realize inside one of these tubes is pened to get stuck in the tube. ZING. No crow’s feet. that you can hear the MRI folks give orders and ask if My smile lines stopped above my nostrils: just baby butt you are okay, but you can’t really hear them talk to each smoothness everywhere. ZIPPY ZAP, TIPPY TAP. No other. It’s like when you’re at the hairdresser and she’s inner thighs. cutting your hair and she says, “Oops!” and you know you’re about to get a much shorter hair cut than you had “Are you all right in there?” came a call from outside. planned. Leave me alone. I am experimenting with Dr. Franken- But in the MRI, I couldn’t hear bubkis. There was no schteen. Igore, push the nurse out into the cold and slam banter. No “Holy moly, that’s not good,” or “We better the dadgummit door! get the doc on the phone pronto,” or “Come here. What do you figure that black spot is?” Not even a simple “I’m fine,” I whispered. “It’s all good. Bye bye.” “I’ve done this for forty-seven years and I’ve never seen that before.” No, you’re just shot into a tube of utter “I’ve never seen anyone so relaxed for their first MRI,” silence. Until… came the voice again. “It’s hard to be in there all alone.”

ZAP, ZIPPY, TING, TING, TING. I decided not to tell her how many people I can fit into my MRI cocoon. All my new selves were having so An MRI machine can only be likened to a science-fic- much fun I was disappointed when the procedure was tion spaceship transporter tube—granted, probably the over. Once back in the blue room with the two-dimen- garbage chute. The diameter of my tube was not much sional mountain scene, I awaited Dr. Mills. bigger than I was. Not a lot of room to, say, move a pinky—if I could. “Just as we suspected,” Dr. Mills said, “there is a line clear across your spinal column where the immune sys- I was 110 pounds, 5’2’ and there was barely enough tem attacked. To protect itself, your body reacted to the room to pass through, pass gas or pass out. (Yes, I do attack with swelling of the myelin sheath. Then the understand that I am 110 pounds only on a planet from swelling bruised and pinched the nerves in your spine. another solar system with different gravity.) The point The myelin is close in DNA to a virus. This is why you is, this was a solo and lonely activity and, in these days can’t walk.” of overpopulation, not much is ever that alone. So what you’re saying is that I have Rocky Stallone Yet, as soon as I was shut up in there I realized how leading my immune cells on a mission to kill and destroy happy the isolation made me—even though I couldn’t viruses. But also that he’s wearing glasses as thick as Mr. get out and the nurse was probably lying about taking Magoo’s. me out if I panicked. The joy of being in my tube was that there was no one to interrupt my thoughts, hard as I can hear it now: they were to string together while on drugs. I closed my eyes and could sense the scanner moving over my “Yo, you guys see that?” whole body. ZING, TIDDLY, ZING. PAT, PAT, ZONG, PONG. Ah, silence. Alone with my thoughts. “Whadda ya think it is, Rocky?”

And just what were those altruistic, lofty thoughts? How “Dunno. Maybe a virus. Hard to tell from here.” to feed the world? End wars? Bring salvation to the

62 ABILITY “Let’s blast it. Can we, huh? Can we, Rocky?” “Sweetie,” I told him over the phone, “did you get my message that I had a small problem on the ski hill and “Hey, whaz da worst dat can happen?” that the hospital kept me overnight for observation?”

KABOOM! “Well, you’re one tough cookie.” he said. “It’s probably just a sprain.” “Oops.” You know when you have sugar-coated something way “Let’s clear outta here, guys.” past a dusting of confectioner’s sugar right over to rock- candy when people can’t pick up on your clues. It was (I have since learned that the inflammation that time to fish—the “cut bait” window had closed. ‘whacked’ my nerves could have been an inside job, a migraine of the spinal fluid. I am not sure this possibili- “Okay,” I said. “Sit down. I am paralyzed from the ty is more comforting than the notion of a Stallone-led waist down. I can only be moved if I have three outside attack. It’s a bit of a toss up: surveillance cam- medics with me at all times.” eras in the parking lot versus the employee locker room. Is it the guy wearing the ski mask, or the guy selling the “I’m on my way.” ski mask? Hey! Cheer up! Maybe it’s both: let’s not rule out a sting. Pun intended.) “It will take you eight hours and they want to discharge me in four.” The night nurse arrived with two more enemas. When it rains, it pours. “What are those for?” I asked. “I can’t “What can I do?” feel anything, so I can’t push.” “Call our doctor and see if he can admit me to our local “Oh, just because,” she said, doing a Texas two-step out hospital.” I didn’t think it wise to explain how dense the the door (quick, quick, slow, slow, slow). staff were at my present location.

Just because? Just because you can charge thirty-five As if on cue, Dr. Mills cleared his throat and entered bucks a piece and you had extras in the supply room? I from the hallway. “Your case is too complex for the don’t care if I’ve had more opiates than a Marrakech doctors here,” he told me. “You need specific help.” hookah salesman, “Just because” is right up there with “because I said so.” The doctors from the local staff all stood behind him, nodding. Hands folded. I suppressed a smirk. The scene Lady, if I could kick, I’d so tae-bo your tailbone. But you looked like a kung fu movie scene in which men in know that, don’t you? I can tell the way you keep things robes and long braids all nod and agree with the head just out of my reach. warlord. If they stood in any tighter of a formation I could’ve bowled them over with my bedpan. As predicted, the enemas did nothing. I can see the report card on this one: “Okay,” I said. “How bad is it?”

Sally is barely passing GI Track 101. Her grades are “That depends.” slipping in Muscle Response. She is not working to her full capacity. None of her parts plays well with the other Oh, not good. bits. THE LESSON: By the next morning I had enough brain cells to remember my husband would be expecting me in the church “Ah, silence. Alone with my thoughts.” parking lot, along with the other skiers, the next day. I had erroneously trusted the first intern with whom I’d As shallow as my thoughts were while I was on drugs spoken to send my urgent message to my hubby. The and in the MRI tube, upon reflection I had to admit that fact that I had not heard from my spouse was, I’d I don’t spend much time with myself. I’m out of prac- assumed, because I didn’t have a working cell phone tice. This was a strange realization because I used to and because my room had been moved several times. spend hours alone as a child. Whether eating wild (Or, possibly, I had talked to him for hours but couldn’t blackberries or wading in a brook, I was often alone quite recall it.) and experiencing the world. I loved it then, so I am going to try more of it now. I say, why not have a play- I borrowed a cell phone to update my husband on my date with yourself, doing what you loved to do when crisis and to alert him to the fact that I would be a you were little: fishing, skipping stones, coloring, or smidge delayed. I wasn’t sure how to break it to him building stuff? that his other-half was now his other one-quarter-or-less. scrambledleggs.net

ABILITY 63 1 2 345 6789

10 11 12 13

14 15 16 17 18

19 20

21 22 23 24

25 26

27 28 29 30

31 32 33 34 35

36 37

38 39 40 41 42 43

44 45 46 47

48 49 50 51 52 53

54 55 56 57

58 59

64 ABILITY ACROSS DOWN

1. Strong advocate for employing actors with disabilities, 1. “Criminal Minds” supports MS Society, Shemar ____ Daryl “Chill” ____ 2. Old salt 6. Main character in “Quid Pro Quo” (goes with 27 across) 3. Amusement sound 10. Chicken ___ king (2 words) 4. ___ Capitan 12. Nightmare tree? 5. ER star played Dr Kerry Weaver with a disability that 14. Creator of the Angel Network of charities caused her to limp (2 words) 17. Come together 7. “I can ____ now, the rain it falls” Johnny Nash (2 18. Thanksgiving spud words) 19. E-mail subject line intro 8. Montgomery locale 20. Saturn or Mercury 9. “Little People, Big world” matriarch whose charity 21. Give hope and confidence to supports kids, at-risk and disability groups (2 words) 24. Tree that is a symbol of stability 11. Exercise machine 25. Have emotion 13. “Tracks of My Tears” singer, first name 27. See 6 across 15. Fountain for one 28. Doze 16. Trouble 30. “The ___ and the Ecstasy” Charlton Heston film 22. Put a meal together 31. “Arrested While Driving While Blind” singers ___ Top 23. Freeing in a away 32. Valerie Sobel formed this charitable Foundation after 26. For example having to watch her son pass away from a terminal illness 27. “You Don’t Mess with Zoltan” actress who con- (3 words) quered DVT, Lainie _____ 37. Celebrity who champions the cause of Vital Voices, 29. Swimming locale ____ Field 33. Ludacris’s sound 38. Movement representing alternate spiritual and philo- 34. Rise like Amelia Earhart sophical values (2 words) 35. Piece of history 42. Art degrees 36. “The Girl with the Dragon Tattoo” nation 44. Guitar master ___ Paul 39. Add-on 45. Hospital for vets 40. “By yesterday!” 48. It’s almost seen as a disability (2 words) 41. Famous fruit picker 50. First bilateral above-the-knee amputee to complete the 42. “The Hobbit” hero Baggins Ironman, ____ Garcia-Tolson 43. Underwater boats 52. Friendly dog 46. Tom and Katie’s baby 54. Environmental watchdogs, for short 47. Jekyll’s alter ego 56. “Maggie May” singer, first name 48. Not fitting in 57. Greyhound, e.g. 49. Driver’s need 58. ____ Quixote 51. Wyatt Earp’s pal 59. Animal trained to assist people with disabilities (2 53. Summer month, abbr. words) 55. Press guy

answers on page 66

ABILITY 65

EVICEDOG I SERV DON

BUS ROD P EPA D

LAB RUDY OLDAGE

U I H S VA LES

BAS Y P NEWAGE

R SALLY N S A

RIVEROFLIFE ZZ

F R O N Y K A

AGONY NAP KNOTT

E FEEL I N O

OAK L ENCOURAGE

O CAR K R D RE

YAM NITE I UN OPRAH

S ELM B ALA A O

ISAAC MITCHELL ANSWERS

66 ABILITY ABILITY 67 68 ABILITY Events & Conferences

ABILITY 69 Events & Conferences

70 ABILITY Events & Conferences

ABILITY 71

74 ABILITY 75 ABILITY ABILITY 75