by Erica Xenne

I was diagnosed with Chronic Lyme Disease at age sixteen. Prior to diagnosis, I was a professional singer and composer. I saw my physician because my voice was hoarse for months, and I had to cancel my audition for Les Miserables, and suspend recording my album. No doctor could find a reason for my persistent laryngitis.  They said it was not Lyme because my test was supposedly negative. My mother, a doctor, suspected Lyme, but she was called a “crazy overbearing stage mom.”  I was sent for a psychiatric evaluation, because doctors said I was imagining my voice loss, and causing myself to be hoarse because I had “success inhibition.” I was evaluated by mental health professionals and judged completely sane.  An ENT gave me steroids to reduce swelling in my vocal chords. Steroids bring out Lyme symptoms.

I was completely bed bound. I could not walk.  My days consisted of my mother waking me up to turn me over in bed so I could sip a straw and swallow a pain killer. I couldn’t move and swallowing was difficult. Once the pain killer kicked in, she would help me to the bathroom, then back to bed so I could sip on something with nutrition and go back to sleep. I lost 20 pounds within a few weeks, couldn’t swallow, couldn’t move, and didn’t know who I was. There was no explanation for this.  Finally we went to a Lyme specialist who put me on IV Rocephin. It was still a long time before I could walk again, but I was on the road to recovery.

Due to excellent care by my Lyme doctor, I am now able to function, but I still speak in a whisper.  I still suffer chronic fatigue, insomnia, arthritis, allergies, and memory loss, and I take various medications daily and endure painful intramuscular antibiotic shots weekly. However, my lifelong dream to release an original album has finally come true, and I sang lead through my whispery voice.  My brother, Jon Brand, also a Chronic Lyme victim, plays drums on the album. For those with Chronic Lyme, I want to spread the message that it is still possible to make dreams come true.

I have changed my name to Erica Xenne because I am not the same person I was before.  The prefix, Xen- , means ‘foreigner or stranger’ – that is how I felt, compared to my peers who could walk through their teens and twenties, and could count on themselves.  The suffix -ne means “not” because, now that I have begun doing music again and changed my name, I am no longer a stranger to myself.  Xenne is pronounced “Zen” because I have had to remain calm in many frightening, life threatening situations.