Adjusting
Hazel was
there for all of us and her loss was, and is, felt for years in the family. Her
three young children stayed with us for a few years until her husband came home
from work and he married again.
So, here
we are again adjusting to a whole “new” normal.
By this
time, both my father and myself are doing pretty well. Dad has found a drug mix
that helped the pain and he was sitting up, but he would never work again.
Adjusting to the loss of their
mother was extremely difficult for my three cousins. And they had another set
of rules here, which I’m know now had to cause them pain, joy, sadness, and
fear. Deana and I were always close; we started kindergarten together, she came
over every Friday night after I developed Dystonia, and our families vacationed
together. David was close to my age and we were close too. Tim was so much
younger and really needed more. This is where Dad stepped in. He became Tim’s
best friend.
In the
fall of 1974, I had to switch schools. Mom thought maybe I could stay all day
at this school which I could, but it had a lunchroom in the basement. When I
think back on it, those concrete steps were extremely dangerous and I was
blessed to attend the school for three years and not fall and break a bone! Because
I went there, my cousins also went to that school.
I got to a point where I could
“run” the bases in baseball and guard my cousins in basketball. When I say run,
it was more like a stick figure fast walking.
Unfortunately,
as my walking improved, my mouth started to draw. It was like dystonia was
telling me, “I’m still here! You can try, but I will always win!”
I have a
speech problem due to my mouth drawing, and my eyes are affected as well. I
don’t blink enough. When I hear myself talk, I don’t recognize the voice. My
head voice is much clearer than what comes from my mouth. When I slow down, my
speech is a bit better, but not much. At least I can usually be understood,
usually is an iffy word here. My head pulls slightly to the right also. Rather
I am more comfortable with my head tilted to the right.
Allow me to describe myself
today. My left side is pretty well normal. My right foot sticks out and I drag
my right foot behind me. My right lower leg is bent and I am unsure where my
knee is exactly. I fall effortlessly at times. Other times, I can stand still
for some time. I can walk better than stand. My stomach pouches out because I
feel safer with my knees bent than straight. My arm is usually behind me. If it
is in front, it can attack me easier. Yes, I call my right hand it; it doesn’t
really belong to me. Occasionally I can trust it to do something or carry
something, but I don’t count on it. And then there is the neck and the voice. I
am not a pretty picture, that’s for certain!
But I am
still trying! I have determination and strength of will that allows me to face
each day with a positive attitude. Some would call me stubborn. But I will not
allow dystonia to define me.
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