I was seven years old when I woke up with what my parent’s thought was
a bad skin rash. They first brought me to my regular doctor and he
instructed my parents to have me take two hot baths a day and to put some
ointment on the rash. After two weeks of hot baths, both my doctor and
parents knew that it was something more then a rash. Thus begins the
countless doctor visits and hospital stays. I think I remember ever doctor
visit and hospital stay and how my Mom and Dad tried to turn them into a
“special outing”. I think they did I good job because I don’t remember the
doctor’s appointments as being a negative experience, more as something I
just had to do. I will always love them for all that they did, although, I
wish that I didn’t have to put them through it. It must be extremely
painful to be a parent and watch their child develop a disease and to be
unable to do anything about it (sorry Mom and Dad).
As the years progressed, so did my scleroderma. By the time I was in
seventh grade, eighty percent of my right side was scarred. My leg/shin
bone and hand where affected the worst. My face was never affected,
however the top of my head on the right side has a large sunken spot. When
I had hair it wasn’t visible but know that I am bald it is there for the
whole world to see (oh well). Over the years I never let scleroderma
prevent me from doing stuff. I was lucky to be surrounded by a family
(especially my sister) and friends who didn’t treat me any different then
anyone else. My parents, family and friends always encouraged me to do
whatever the other kids where doing and that I was no different then them.
So I did. I always played baseball, football, biked or did what every
“normal” kid was doing.
The one battle that scleroderma has won is that I don’t wear shorts. My
right leg is considerably smaller then my left (about 3 ½ inches just in
length not to mention diameter). Over the years I have backed out of going
to a number of pool parties and other summer outings where wearing long
pants is not accepted. I do think at times how much different my life
would be without scleroderma. How great it would be to have two legs the
same size, wearing shorts and normal shoes. Like so many other letters
that I have read, I have also at times wished to amputate my leg and have
it replaced with a fake leg. I feel that more people accept a guy with a
fake leg then with a disfigured leg. Then I think about it and I realize
that I have a fully function leg, sure it is smaller but I can run, jump
and do anything with it that I want. I can feel cold and warmth against it
and I scream just like everyone when I stub my toe in the middle of night
getting a drink of water. I don’t swim or wear shorts because of my
personal preference but not that I can’t. So why would I want a fake leg.
Growing up I always wondered if I would get married. I always thought that
if I met a woman who’s leg looked like mine would I date her (I never was
really sure of the answer). If I wasn’t sure if I could then why would
someone what to date me much less marry me. Well, it happened I married a
wonderful, beautiful, loving woman. She never gave my leg a second look.
The first time she saw my leg she made me feel like I have two identical
legs. They say love is blind but I think she take it to a new level. She
is always trying to get me to wear shorts and she even convinces me to go
swimming with her. I was so nervous the first time we went to a pool that
everyone was looking at me. In a matter of minutes she had me in the pool
and immediately I felt like I had two identical legs (one of the top 5
greatest moments of my life).
We have been married for over four years (6 years since the first time in
the pool) and in that time we have gone to more pools then I had in my
whole lifetime up to that point. She has also blessed me by giving birth
to two beautiful baby boys, one is three years old and the other is four
months.
I have been very fortunate, I am not sure if it is because scleroderma
entered my life at such a young age that I really don’t how to live life
without it. Or if it is because I have been blessed with loving family and
friends that have made me feel special regardless of what I have. It’s
probably a little combination of both wrapped up in a blessing from God.
Today I am 36 years old and I am enjoying life. I said early that
scleroderma has won one battle with me but I know that I am winning the
war. I even decided to start taking swimming lessons so that I can be the
one that teaches my sons how to swim.
Remain strong and remember that life is a gift and that we are all faced
with different challenges. It is up to us to take the time to smell the
flowers on road and if there isn’t any flowers take the time to plant them
and watch them grow.
Roger - rdivito@sbcglobal.net
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