Growing up my life was filled with sunshine and salt water. Running along the beaches was my oasis. Sun streaked hair and tan lines were a way of life. Wanderlust led me to the woods above the cliffs overlooking the sea.
Childhood viewed through the looking glass.
But as to the yin for every yang, there were dark sides. There were also the bright florescent lights of hospital rooms. There was the dank smell of alcohol and the presence of children who could not be children. They had a child’s face, but a body that was rapidly trying to self destruct, leaving some in wheel chairs.
I was diagnosed when I was 2 years old. Born a happy and healthy baby for those two years I never even had a cold. Once my disease hit, it hit hard and everything started to spiral rapidly downward. No one knew what was wrong with me. No one could diagnose why I was getting sicker and sicker. I was dying.
I don’t remember much during that time. I remember hospital rooms. I remember not being able to walk. I would walk a few steps and fall down, get back up, fall down again. I remember the doctors saying I would never walk again. My muscles were disintegrating. No one knew why. My disease was one that they had never seen before. Soon thereafter I underwent surgery for a muscle biopsy from my back leg. The doctors put me under too soon and I woke up right as I was being wheeled into the surgical room. I started screaming and I remember vividly seeing my mom in a corner and crying out to her as six or seven doctors restrained a terrified me until the sedatives kicked in.
The results came back that I had a disease that was a cousin to Lupus, Dermatomyositis.
Weekends that should have been spent running in the sunshine and breathing in the sea, were wasted on bags of fluids filled with drugs to keep me alive. I didn’t realize that I had to learn what stoicism was before I even knew how to fall in love.
Beyond the monthly trips into Manhattan for blood work, and the weekly injections of steroids, I started developing calcium deposits on the left elbow of my arm. Not only were they unsightly and left me feeling ugly, it became necessary for more monthly visits to the hospital for an experimental medication that was deemed practically radioactive and unstable. I went once a month and sat for three hours hooked up to an IV filled with medication that left me feeling horrible. I remember watching horror movies in the hospital because nothing really scared me anymore at that point.
I think in moments of suffering, this carves away deepness. Sometimes that deepness left me feeling like a black hole.
But there is good in everything. Black holes have the ability to suck in everything around them, including the light. That light becomes a part of it. My light was that without my disease I would have never been able to cultivate my talent for drawing. Being stuck inside all the time creates a need for an outlet. Drawing created a form of catharsis that became the stepping stone of my life.
But it did not entirely distract me from the endless rounds of medications. All with varying side effects. Some were so new and experimental we had no idea what the long term effects would be. It’s very isolating being a child with an incurable disease. I think it makes you question the philosophy of life at a younger age. I remember having to disappear during my lunch break to go to physical therapy and my friends would always question where I was. I had to live a life of mystery because I was embarrassed. I was embarrassed and ashamed, so I kept my secrets.
I remember on my birthday every year I’d make a wish to get better and be normal just like everyone else. Around my 16th birthday I lied to my family and I stopped taking my medication. It was making me feel sick and I was so sick of it. A month went by, and I finally confessed to my doctors what I did. They freaked out. They told me how dangerous and stupid I was to take a chance like that. But then, they ran blood work, and my results came back…normal. My wish came true.
I now live in remission. My disease is asleep deep inside of me. Unfortunately, it can only end in one of two ways. One: I live a life of remission and the monster inside of me lays dormant. Two: Its wakes up and returns with a vengeance. The other night I was sitting with my mom, talking. She told me that I was too young to remember this but the doctors wanted my blood work to be sent to a research facility in D.C to be studied to help other children who may also be born with this. She told me the doctors asked if I knew how to sign my name… and when my mom said yes, I signed my name to release my blood work to help children of the future. I never knew. But I am grateful she told me. I am glad that although this form of suffering was inevitable for me, that through it I was able to help future generations