Put yourself in the mind of a four-year-old. Something is wrong with you but you have no idea what. Your mother says your leg is an odd color but you don't see it. You've gone to your normal doctor and his expression isn't comforting. He suggests another doctor. The next doctor has the same advice. And it continues until you meet the sixth doctor. Her expression isn't puzzled like your normal doctor's. Looking back now I wish it had been. She knew why my leg was that color. She started to explain but hey, I'm four. What do big medical words mean to me?
Two words I heard stuck with me to this day. The problem was I had a skin disease called scleroderma which affected my immune system. Scleroderma, most people today don't know what it means. Why should I be forced to learn the terror of the word as a toddler? There is no known cause of scleroderma which triggered the other word which would be engraved in my brain for all eternity. Incurable. I was four years old. I was just beginning to realize what happened around me and this hit me in the face. Four years old and now I would never be able to remember my life when I was just a normal little girl.
I was treated with a medicine which came in pills or shots. My parents decided I take the pills since neither wanted to give their youngest daughter a shot. Even though the pills were small I couldn't swallow them easily. A few months after the pain that would become my life began, my parents were becoming angry. Whenever I would swallow a pill, I would puke it up seconds later. They yelled at me, thinking I was forcing myself to throw up. It must have been interesting, seeing a four-year-old girl yelling back at her parents saying it wasn't her fault. I didn't even know it was possible for someone to make themselves throw up.
The fights continued until we saw one of my doctors, since I now had three. He said it truly wasn't my fault. My parents stopped yelling at me. But those few months still cling to me. Whenever I would take my pills I would drink orange soda with them. Ten years later, the sight of orange soda still makes me sick. Since I wasn't able to keep the pills down I would have to take the shot. My mother learned how to give me my shot. I hated it but it was the only way. Once a week, every week, I would sit on my dad's lap and my mother would stick the needle in me. So it continued for a few years.
After a visit with my doctor I was amazed. He said it might be the last time I ever saw him. I think I was about seven here. After about three years of pain I might finally be able to have a normal life? I couldn't believe it, it was too good to be true. Sadly, as it turns out, it was. A few months later my leg had turned a purplish color. A sign that the scleroderma was active. My mother called my doctor and got a appointment as soon as possible. She confirmed what my family had figured, it was back. I was put back on the shots.
This continued. Once a week, a shot to the leg. Once a month, two vials of blood drawn from my arm to confirm my organs are okay. Day after day. Week after week. Year after year. This was my life. As long as I wore pants no one knew with the exceptions of my close friends. It continued for a long time. From the time my hopes of a normal life were dashed in 1st grade up until 7th grade. So many things happened that year, I didn't need my scleroderma suddenly deciding to become more of a pain. But it did.
My friend's father had died and another had dangerously low confidence. I had a hard enough time dealing with their problems I didn't need any more. But the universe must really not like me. I developed arthritis in my joints. Sometimes I couldn't even walk. When my parents told my doctors about this they gave me pain killers. Pills. I still can't take pills. It came in liquid form also but I couldn't even smell that stuff. I chose to deal with the pain.
By this time I was in middle school where once again only my close friends knew about my scleroderma. But something happened. In gym, 7th graders were required to change clothes. When I told my mother this, she got me my one of my sister's old shirts and shorts. Shorts, a piece of clothing I had avoided for years. The first day of gym I had so many people staring at me. It drove me insane. Ignore it, I thought, I just want to be normal. They wouldn't ignore it. One asked me why my leg was smaller than the other. A side effect of scleroderma was loss of all fat in my leg. I quickly said I had a skin condition and walked away as if nothing happened. Ignorance truly is bliss.
This year was terrible. The summer before that school year my hopes of a normal life were dashed once again. It hurt so much more this time. Rather than seven I was twelve so the pain cut so much deeper. I hoped so much but it came back. I can remember seeing my doctor smiling at me, saying he hoped I would never have to see him again. Months later, I was back in his office.
I couldn't take all this. My friends were slowly becoming better but that year had left me so worn down. Worry and anguish filled that year. I couldn't take a whole summer of mainly my family. I had four sisters but only lived with two. One of them was okay but the other…she can be demonic. When we fought I was no better. Around ten years of this pain had left me bitter and rude. I did have times where I was happy, but if I'm left alone too long with my sister it could turn ugly. So I found a way of escape, summer camp.
For years my doctors had been trying to get me to go to a camp for kids with skin condition, arthritis, or anything. I never wanted to go but after that year I really needed to get away. I flew half way across the country to Minnesota, to Camp Discovery. I was blown away. I stared at the other kids around me. When I caught the eye of a girl with no hair I subconsciously touched my own. I turned around to see a girl who's hands were stuck together. Oh man, I thought, and all this time I've been complaining about a few needles?
When I got home I looked on the web site to find some of the former campers had died. There are two types of scleroderma. One was lethal, the other was not. I had the non-lethal kind. As I read that I froze. I dodge the world's biggest bullet? I thought. Then I remembered something my sister had told me years ago. Her friend's mom had died from scleroderma. Considering it was a rare disease it was actually common in my hometown. I was secretly glad when we moved, if only a town over.
I could walk, talk, use my hands, I have my hair and my life. Why did I act that way all these years? I'm so incredibly lucky. Although sometimes I wish I hadn't, I had given up. I accept the fact that it's pretty much certain that I will always have scleroderma and will never be able to remember life without it. It could be so much worse I hardly even care.
That doesn't mean I don't mutter curses under my breath in foreign languages when I walk while my arthritis is acting up. My life could be better, but it could be so much worse. I may never have my health but I have my life. Not everyone does. These past two years have changed me so much. I'm still in contact with some of my friends from camp and I can't wait until this summer when I see them again. I hope everyone I met last year is there again.
I have my life and for that I'm grateful. Not everyone is that lucky. But there's always those whose lives are so bad they don't want it. As one of my friends has said, "Life is a Gift". She even wrote a poem about it. I've written a few poems but I don't truly care for them. Stories can be fun to write and in some cases, like this, they help me. I'm not sure why. Stories can take awhile and there's always writer's block or losing interest in a story. I prefer quotes. I've written a few but the only one really kept my attention. "Live life for those who can't." Some can't live their lives, others simply won't. I can and I will.
I may have been incurable at four years old but it gave me an insight. I appreciate my life so much more than I would have thought. It could be worse. I just wish everyone else knew that. No matter how bad something seems, remember, it could always be worse. I wouldn't suggest saying it couldn't be, the universe might just think it has to prove you wrong.
Email: [email protected]
Story edited 11-12-07 JTD
Story posted 01-09-08 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
Linear Scleroderma Stories
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Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.