My Story

I’ve always wanted to write about my life, but was never sure of who would want to read it. So, I guess, the only thing I can do is begin to share my story.

I am the 2^nd born of Norma and Robert Silverstein. My mother had 2 boys from a previous marriage, so I would be her first girl! My Mom was excited to have me…the first girl born on her side of the family….the first Granddaughter, the first Niece…it was exciting!

I was 2 weeks late in coming. On December 20^th, 1979, I entered the world. My parents were anticipating a good, healthy baby girl. Well, much to their surprise, when I did emerge, it was quickly obvious there was something drastically wrong. The Dr’s rushed me out of the room…with shouts of my Mom following them, ‘What’s wrong with my baby?’ Where are you taking her?’ Until that moment, when I was formally introduced to the world, there had been no signs that anything at all was wrong with me.

I had no strength in all of the extremities of my body. I couldn’t lift my little arm up off my bed. My feet were both extremely clubbed…my heals were facing the ceiling, in fact. My left hip was displaced and was missing a part of the ball and socket joint. You could see some malformation in my wrists and fingers. My tongue had not grown properly and was halfway down the back of my throat, making it nearly impossible to eat.

My parents were devastated, but had nothing in them, but Fight! They took me to Dr after Dr after Dr and they were always told the same story…’Just put her in a wheelchair, she’ll never be able to walk.’ My parents wouldn’t and couldn’t accept that as my fate….to be so helpless for the rest of my life.

They didn’t give up on looking for and finding me a Dr that was, at least, willing to give me a chance. Finally they found one…Dr. Ogden was his name. He had great hopes and dreams for me…he wanted to do everything he could to give me the best life possible. He agreed to do a major surgery on my left hip…he had to place the ball where it should have been and hoped that the socket would, naturally, grow around it.

When I was 5 years old, I took my first steps! I may have started a little late, but I was determined, now more than ever, that I was going to be ‘just like everyone else’.

I would have to say that the most difficulty was had when I started going to school. Back then, children could be so mean. They didn’t understand why I was different or why I walked the way I did…so they made fun of me every chance they got. I came home from school crying almost every day. I couldn’t understand what I had done to deserve this kind of treatment, especially when, in my family, I was just as ‘normal’ as my brothers. I think the worst part was that, although I may be physically challenged in everything I do, my brain was and has never been affected. I thought just like everyone else, felt like everyone else…but it was hard to get that message across when people just gawked at my physical state. People were often scared or felt uncomfortable asking me about my disability. I was always more than willing to explain what I knew about my physical state and would try to help those around me understand what my life was like.

I was diagnosed as having Arthrogryposis Multiplex Congenita. For reasons unknown, my movement, when I was in my Mother’s womb, was restricted, thus keeping my body from growing properly.

There are many forms of Arthrogryposis. Each person that has it is different in how they’re affected. Some are able to walk, as I am, but some will never be able to walk without the assistance of properly fitted canes and crutches. Some will never be able to walk.

The Dr’s tell me that I have an extreme case of Arthrgryposis. It affects me every day of my life. Simple things sometimes seem to be the most challenging. The whole left side of my body – arms, legs, fingers, etc – are weaker than my right side. I call my left hand my ‘helper hand’. I’m not able to grip anything with it and, if I want to move my left leg, I have to somehow swing it or move it with my right arm.

My life is extremely challenging and there are many things that I will never be able to do because my body just won’t allow me to. But I don’t let that stop me! I am determined to live my life to its fullest! Sure, I have my bad days every now and then, who doesn’t? But I get back up, brush myself off, and try, try again.

Currently I have my own apt that I rent in Burlington, Ontario. I own a little Honda Civic that gets me around everywhere and enables me to get my grocery shopping done, and gets me to wherever else I may need to go. I love meeting new people, I love sharing my achievements and my struggles to help others have a sense that they are more capable than, sometimes, they give themselves credit for.

I guess I could share with you a typical day in the ‘Life of Shawna’. I get up in the late morning…I’m so not a morning person! I’ll usually have a meal replacement shake to get me started. Then it’s time to take my painkillers so that I am able to get into the shower and get washed. Since my left side is so weak, I really only use my right hand to wash my hair and the rest of my body. I’ve come to figure out different ways of doing most anything and everything. When I get out of the shower, I towel dry, and then lay down on my bed to brush through my hair. I find that if I’m laying down, it doesn’t take as much strength to brush my hair and my arm doesn’t tire too quickly. Once my hair is brushed, there comes the task of actually getting dressed. I feel like it’s a battle every day just to get my undergarments on, but I do it! Once I’ve gotten dressed, I try to decide what to do with my hair. Thank goodness it’s curly, so it doesn’t take a whole lot of work! But, if I want it to look exceptionally nice, I’ll lay back down on my bed and put some gel or smoothing crème in it. Once that’s all done, I go on with my day. Whether it be to just relax, if I’m in a lot of pain, or go out on the town in what I call my ‘Wheelie’! I just got this ‘Wheelie’ recently, a power wheelchair completely covered for me by the government! Although I am only 33 years old, I have already developed severe arthritis in my feet and ankles…mostly due to surgeries and lack of muscle control. In other words, I walk very hard on my feet because I can’t control the muscles in my legs….I can only manage to try and direct my body as to where I want it to go, but often that doesn’t happen either because a lot of my muscles are involuntary…they do what they want.

If I felt like that was enough for me to handle in a lifetime, more was to come my way! In my early 20’s, I was diagnosed with Borderline Personality Disorder. I was also told that I had been and currently do suffer from Depression, Anxiety, Obsessive Compulsive Disorder, and Post Traumatic Stress Disorder. There are many reasons for the cause of each and every one of these diagnoses. In my younger years, about 8 or 9 years of age, I found my own way of dealing with my rage and anger towards those that made fun of me and made my life harder. I had begun to self harm. To be honest, at the time I didn’t think that this was really such a bad way to handle my emotions. I didn’t know how to express how I was feeling, nor did I even understand it all. So, starting at that young age, I self harmed for most of my life. I think I knew that it was wrong, but, in my way of thinking, I wasn’t hurting anyone and it helped me feel better. It gave me a sense of control and a momentary escape from the pain I felt.

My self harm continued even after I moved out of my Parent’s house. I would hide in the bathroom or in my bedroom and do what I felt I needed to do to get by. Eventually, when living with a friend, she caught me self harming on a few occasions. She gave me an ultimatum…either I stop self harming and get the help I needed or I would have to move out. At this point, although I still didn’t understand the total effects of it all on those around me, I started to go for help. I learned quickly how my actions did affect those around me. It hurt them to see me do things to myself. I was able to look outside my little protective bubble and see things through another’s eyes.

I’m not at all proud of what I did, but, at that time in my life, I felt that it was my only way to cope. I have since been to a lot of Therapy, many groups, and have learned a great deal. I can’t say, if I’m being honest, that I don’t do this anymore, but I try my best not to. I have the coping skills now that I need to get through the hard times….I just have to remember to conscientiously use them. I do have set backs, but I fall, brush myself off, and try again.

I guess you might be wondering why I am writing about my life. My goal and dream in life is to help others! I want people to know that they can get through anything life throws at them. Yes, we all have our demons and difficulties, but there is always a way out that is positive and healthy! It has a lot to do with the way that we allow ourselves to see things….our outlook, our hopes, our dreams. We can accomplish anything we put our minds to! And with a positive support system, you can get through the hardest of times.

I lost my youngest brother to an accidental drug overdose when he was only 19 years of age. This absolutely devastated me! I felt that it was supposed to have been me that had gone in his place, as I was the one that, at the time, had wanted my life to be over. But, with the help of close family and friends, I came to realize that, yes, Aaron was gone, but I’m here. And I have a purpose!

I want to make a positive impact on the lives of those around me. Whether it be a close friend or a stranger that I meet on the street. I want to make a difference! I want people to know that life is always worth living for! That there is always something to look forward to!

Life is full of ups and downs, that’s for sure, but we can do this! We can make our own lives better and, by doing so, help others along our path! My hope is that, knowing the challenges I’ve faced, I can somehow help another through their own challenges.

Please let me know if you know of any way to get my story out there. I want to share my story with people. I want to help people! I want to have my own happiness, as well as, maybe add a little sunshine to those around me!

Shawna Rae Silverstein