Welcome To My Little World!
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A Summary Of My Life
With Spina Bifida
I was born in a small place in Dallas, Texas on Ross Avenue called
Sparks Clinic with Spina Bifida. As everyone knows there was very little
known about it way back then (or even now).
When I was about 15 days old my mother was told that I would never
walk or talk and probably not be anything much more than a vegetable if
I even lived. My grandfather would not accept the doctors diagnosis that I
would die in a few days and there was nothing that they could do. He
searched all over Dallas until he found a Neurosurgeon that was willing to
try and operate. He said it was a no win situation because if nothing was
done I would die anyway! I was operated on when I was 6 weeks old. The
results of the surgery were not exactly successful, but "promising" as
quoted by the neurosurgeons.
My life expectancy was very short. So much for the word "promising." It
is logical to think that while growing up I would be monitored, x-rayed,
poked, prodded, tested and given years of physical therapy, but let's not
forget this was a very long time ago. So little was known about what to do,
let alone anything so organized as regular check ups and Physical Therapy!
What was done was by my Mother and Grandparents. I learned
co-ordination with my feet tied to the tricycle pedals so I could rotate
them. I was very late walking (with the aid of braces) and grew at what
was considered a "fair rate." My brain fluid (hydrocephalus) then and
always has tested borderline abnormal. I have some brain damage (which I
have always used quite jokingly as an excuse for doing anything even
remotely dumb) but it is in the part of my brain that has nothing to do with
I started to school and had many problems but went on to finish. I got
married and had four children along with working a job off and on. I feel that
I lived as "normal" a life as was possible up until about 1989. At this time
a lot of things began to change. I had always had a bad weakness in my
left leg and back all along and had fallen a lot all my life but at this time
it got a lot worse. I was beginning to fall more and more frequently. I also
had terrible pain in my back when trying to stand. I fell once and broke
some ribs and my sternum. I really very seriously hurt myself many other
times so I knew that I had to do something about it. Parkland Hospital
was considered the best. So there, after extensive and very complicated
tests, I was told by a neurosurgeon that I had the most severe type of
Spina Bifida called "Myelomungocele" plus all the discs in my spine had
slipped over fifty percent and my spinal cord was tethered. All these
slipped discs were pressing on a lot of the nerves in my body and
paralyzing me. The Dr. said it was found to be degenerative and with age
it would probably get worse. There was a surgery that could be done to
detach my spinal cord where it is tethered but I didn't like the odds,
so I told them I would take my chances as I was. They prescribed a
cane to help keep me from falling and an anti-inflammatory drug for
the pain and sent me on my way.
Needless to say, the doctor was right and it did get a lot worse. In 3/96, I
fell and broke my arm so bad it had to be surgically repaired. The pins the
surgeon tried to use wouldn't hold because I had osteoporosis so he had to
use wire instead. This left my arm in bad shape as to the range of motion.
About ten months later after extensive therapy on my arm, back and legs,
I began to get very depressed and asked my orthopedic doctor about it. I
was given a prescription for anti-depressants but they seemed to make me
so sleepy that I could hardly function. After a few weeks of this I began to
get worse and my husband was unable to wake me one morning. He called
an ambulance and took me to emergency where they put me in ICU. I laid
there in a coma for five days. The doctors were checking everything but my
whole system had shut down. Just about the time the doctors told my
family that they had done all they could, a test came back showing that I
had no thyroid hormone in my system. It had completely quit working.
They gave me the needed hormones through an IV which had never been
done before with the high dosage that I needed. I came out of the coma
the next day very confused but most definitely alive. So I know that only
by the grace of God am I still here.
My depression didn't magically disappear, though. I was put back on
medication and it seems to be slowly helping. I could go on and on and
back and forth with my story but space is limited.
My first husband and I broke up after 20 years but we still talk by phone
about once or twice a month. He has always been very good to me. We
share four grown children and eight grandchildren that are a real
blessing to me.
I am now alternating between a four pronged cane and a wheelchair
I have to see the Doctor every six weeks to three months to check my
thyroid level and keep my medication regulated. This lack of thyroid has
now also been linked to damage done from the Spina Bifida. And my
depression has been linked with thyroid problems so sometimes I seem
to be in a vicious circle that I just can't get out of. I feel that all of this
has happened to me for a purpose. God has chosen to keep me alive for
some reason and although I may never know what that reason is, I try
to do my best and treat everyone as I would like to be treated myself.
I don't get out much but I have many wonderful friends to talk with
every day on the internet. I'm a movieholic and I read a lot. I also love
to write so I am studying now to better myself for that. I've even began
to put some of my finished work on the net. I've found that trying to stay
busy is the best way to go. With the help of a wonderful husband, a very
loving family and all my cyber friends I manage to do quite well and lead
a happy life. Oh I can't say that everything is great all the time. I have
good days and then I have bad days. I feel the best way to wrap up my
story is to say that doctors can be wrong, even now today, as well as way
back then. A lot of it depends on you. Your personality and attitude can
mean a lot but most of all you need a strong will to live the precious life
that God has given you. The thing that has brought me through all of this
is my faith in God and my great sense of humor. I don't want to ever lose
either one of those because they have carried me through so much for such
a long time.
I have often wondered if there was anyone who is over 50 years
old as I am, alive with Spina Bifida. If you are, or have read this article
and have some questions to ask or just have something to say please feel
free to send me an email.
" By Wynelle Clevenger AKA Big D1999©"