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 2nd 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 20th,
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
