DEPARTMENT - Patient Voices Lyme Disease Steals Singer’s Voice Giving up music felt like she had lost herself By Erica Xenne

People ask, “What do you do?” “What are you into?” Lyme disease doesn’t do that; it must be something else!” The underlying question is, “Who are you?” That is what Although I avoided music, songs kept writing themselves people want to know. Childhood is a time to explore these through me. During the ten years that I was not doing music, questions. But for me there was no question. I knew who I I built up a repertoire of about 20 songs. Little by little, I began was and what I loved to do for as long as I can remember. sharing my songs and was encouraged to write for other singers. Before Lyme disease, I was a professional singer, pianist But it didn’t feel right. I love singing and was born to sing on stage. and composer. When people asked, “What do you want I started performing with a backup band, singing through my to be when you grow up?” the answer was: A singer. whispery voice. Most shows were tough. When I played solo, my I started piano lessons at four – acting and singing at eleven. I voice seemed haunting and angelic. With a band, my voice was practiced in the school music room during lunch. I was usually drowned out. But a few good shows kept me going. in two or three musicals. By age 13, I began playing piano and Exiled from my passion [Eros] – singing – I call my band singing at restaurants for tips. Erosian Exile. When I I saved my money because I perform, I wear white, which dreamed of buying a mobile reflects colors around me home and traveling around but never absorbs them. the country with my keyboard I have lost my ability to speak to sing all over America. above a whisper and my oppor- Before my sixteenth birthday, tunity to be on Broadway. But I was preparing to audition for I have gained faith in myself the Broadway show “Les Mis- and the power of my dreams. erables,” recording an original Beyond any doubt, nothing is album in New York City and going to change the essence considering other major pro- of who I am. My struggles are fessional opportunities. reflected in my songs. Al- But on my birthday I woke though I may be a changed up hoarse. I couldn’t sing and person, the act of reflecting had to cancel one event after my emotions through music – another. The laryngitis per- even grieving for what I have sisted for months. Nobody lost – strengthens my essence. knew why. Doctors put me on This year, Erosian Exile re- steroids hoping to reduce in- leased a rock and roll album flammation in my vocal cords. called Slave to Freedom. I After my second course of recently directed, shot and steroids, I couldn’t move. My edited my first music video long, wavy hair fell out rapidly. for the song, Born in a Box. I couldn’t feed myself or put on I am recording an acoustic clothes. Sometimes I didn’t know who I was. I spoke in a whisper. album, playing my songs on piano and sing lead with cello and Once I was diagnosed with Lyme disease and began antibiotic backup vocals. I’m preparing my band for the next rock album, treatment, I improved. After a few years I went from being unable and slowly chipping away at an electronic album. Though I to move to being able to walk. Despite my continuing illness, I often sing with backup singers, I sing lead on all of my songs. was able to graduate from college. But my voice never recovered. Because my voice comes and goes as my Lyme fluctuates, it Even after four vocal chord surgeries, I still speak in a whisper. takes a long time to record vocals, but it is worth the struggle. I felt lost. I stopped playing music. I could not play piano All my life I have sung for the love of singing, but now I sing for without crying for my missing voice. I did not know what I hope. I sing because nobody should give up on their dreams. Yes, wanted to do or who I was. I wanted to say, “I was a singer, I have Lyme. I speak in a whisper and have scar tissue where my but now I’m nobody.” People made rude comments – “What’s vocal cords once were. But a singer is who I am. I will not give up. wrong with your voice?” If I took the risk of telling them The author may be reached at erosianexile.com. that I had Lyme disease, I got unjustified remarks like, “Well,

30 The Lyme Times