Over the last few years I have been asked over and over again how did you learn to do… I have decided to try to document some of the memories on how I learned to be the independent women that I am today. I don’t plan to account things in any particular order what ever comes to me that week will be the memory of the week. Some stories that I plan to talk about are: learning to drive a car, tying my shoes, learning to dress myself, washing my own hair and laundry. If there are somethings you have questions about please post me. I’m sure there are many tasks that are there that I do differently than others and I’m happy to share.
For the first 20 years of my life I knew of only three other people with TARs, I was told one boy was six months younger, the other boy was six months older and then there was the young man who was 18 years older than me. I have one memory of speaking with Andy, the young man, on the phone I remember him telling me that he drove a car and flew a plane. My parents had met him once at Shriner’s Hospital when I was only a few years old. The brief moments of connect that Andy had with my family and I had more impact then he may of ever known. First he gave my parents hope that I would become independent some day. He was also living proof that you could grow up with TARs and be healthy and happy. I also recently learned that his dressing sticks gave my parents the idea of creating my hook a.k.a. dress stick. Mine would develop into something much different but it gave me the independence that he had in his life. Our conversation on the phone made me realize that I was not alone in the world. Someone else was out there that understood what I was going through in my life. While in college I meet a woman with TARs for the first time and I learned that there was long arm TARs and short arm TARs. Unfortunately, our only common thread was TARs and did not become very close friends in the end.
A number of years later Shriner’s Hospital took me up on my offer that if there was anyway that I could help please call me. There was a family with a two-year old boy with short arm TARs and they wanted to talk with another with TARs or others who understood TARs a bit more than them. I told the hospital that I would be happy to talk with them please give them my number. I waited for their call. Our first call lasted hours. She had so many questions about how I had learned to do things, how my parent dealt with having a child with a disability, and what was my medical history was like. It was exciting to think that my own life experience could help this family in a real positive way. I realized later that I was the hope for this family that Andy had been for mine. We had a number of conversations after that and then we decided to meet.
Meeting young Michael was exciting and difficult all at the same time. When they all first arrived Michael was brought into my apartment and they ran back to car for a moment. I remember seeing him sitting there on the floor and for a brief moment my childhood flashed in front of my eyes I was sad for him because I knew what kinds of physical and emotional pain was yet to come. Quickly, every else was in the house and the fun began. I got to watch Michael do things in his own way which was amazing to watch. It gave me a peek into what my childhood may have been like from the other side. This new friendship gave me a new understanding to what my parent did for me and how hard it must have been for them. Over the last few years we have continued to be friends talking on the phone and visiting. Michael has had surgeries now that give him the hope of walking on his own some day.
The internet has been an amazing tools to interact with other people who have TARs. At this point in my life I have met, spoken to, and emailed many people with TARs and some of their family. My story is online and it has begun to give hope to more than one family. I have had the chance to met others and support them in their independence. That story is for another day.
Within the first year of my life I had small cross scars on my ankles I’ve been told that they were needed because of the cut down that was necessary. Cut down what that meant I still don’t know. What I do know is that was just the beginning of my scars. I have about ten scars on my legs and all of them are different shapes and sizes. They occurred to foster one common goal and that was for me to walk without the need for leg braces. As the years went by feelings about my scars would change. At times they were cool because I had better scars than all the boys. I was able to freak my older sister out by making her look at them when they were new. Then they were not so cool any more. I found myself hiding them from the world. My legs were bony, skinny, and scarred because of all of the surgeries. The interesting thing about my insecurities was that when I was made fun of it was usually about not having arms. Finally as I ended my teen years I shredded my insecurity of my legs and embraced the scars that gave me the strength to walk on my own. In my early twenties I was offered the chance to cover my scars through plastic surgery and I said no. These scars were a part of me and I was not hiding a piece of myself again.
About 2 and a half years ago I decided to make a mark on my body of my own choosing. I was about to get my first tattoo. Some people supported me, some did not and others did not understand why. The WHY was empowering. Throughout my childhood scars were left on my legs by others. Truly, I was never asked do you want the surgeries that will leave scars on your body but I never said no either. I wanted to walk and that was the only thought. This tattoo would be the first time that I requested a mark on my body of my own free will and had nothing to do with being able to walk for the first time in my life. It was my choice and that was powerful. This past weekend I received my second tattoo. It was still about my choice and it represented me taking back my body. The tattoo sits right next to one of the scars and now when you look at my leg you first see a mark that I choose and then the scar. interestingly, while getting the second tattoo the feel and the vibration of the needles reminded me of getting my casts removed as a child. That process was scary and sometimes painful. Now I have a new memory that was about choice that was not frightening or painful. It was EMPOWERING!
As a woman with a disability this chosen body transformation has been an amazing experience. Will I choose more tattoos in the future or will I again be scarred to continue my walking I do not know only time will tell.
Mangled, frail, delicate infant
Weak, poor, ignorant infant, I was NOT!
You did not have the power
to define my fate with Death
Cripple, feeble-minded, pitiful child
Unable, immobile, lame child, I was NOT!
I defied your prediction, then
I deny your position, now
Undetermined, incapable, paralyzed woman
Lessen, negative, powerless woman, I am NOT!
Fear forced your prediction of my Death
Fear created your insecurity
Fear does NOT rule me
Complete, strong, unbreakable infant
Bold, healthy, aware infant, I WAS!
I chose to prove you wrong
The power to live was mine
Whole, intelligent, witty, child
Able, mobile, bright child, I WAS!
I believed in myself
I knew success was coming
Determined, capable, secure woman
Brave, confident, powerful woman, I AM!
I fought against your fear
I fought against your insecurity
I chose LIFE when you would Not!
By Sheila Radziewicz ©