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Saturday, March 28, 2009

Tough Question (part 3)

The years passed slowly. JD and I were together through it
all. There was no manual, no guide book, to tell me how to
succeed as a deaf-blind and physically challenge mother. I
had to figure it out on my own. If one thing didn't work, I
tried something else. It was true trial and error. JD and
I were a great team. We made up the rules as we went
There's more to this story than what you see here. That's
a blog for another day. In short, my husband was not
supportive. He was both physically and emotional abusive to
me. He kept me under his control, isolated from others and
my family. I was a prisoner to his dark moods, never
knowing what would happen next. JD was there to see it all.
How horrible it must be for a small child to see his mother
abused. I stayed in this marriage for years, in fear of
losing my son. I never imagined a judge would give a
deaf-blind mother custody of a young child. I needed JD
in order to survive. So I stayed and did my best to care
for JD.
When JD was five years old, there came a day in which I
finally woke up to reality. This environment was too
traumatic for JD. I had to get him out. It might mean
losing him, but I had to try for his sake. Thus, begins the
present chapter of my life.
JD and I moved to another state to live with my parents. I
went to court for my divorce and a nasty custody battle. A
mother's true love will always triumph. Deaf-blind or not,
I won custody of JD. Our lives are happy and free now. We
are still together. We are still a wonderful team. But now
there is no fear, no pain or suffering.
Once settled in my new home, I became a patient at one of
the nation's top medical centers. They went over all my
medical records, took a long case-history, and ordered some
new tests. They immediately threw out the diagnosis of
GBS. My new doctors didn't know what I had, but they were
certain it wasn't GBS. My symptoms were not really
consistent with GBS. It was time to start over in finding a
proper diagnosis.
I've had numerous genetic tests over the years. We've
ruled out syndrome after disease after illness. If it even
partially seems to fit, I've been tested for it. So far
everything has come back negative.
From my case file and family history, the doctors have
concluded that Charles and I have the same genetic problem.
Whatever it is, it has effected our bodies in different
ways. I was more severely effected. This explains why
Charles had normal hearing and only slight neuropathy of his
The doctors now believe that I have a Mitochondrial
Cytopathy. This is basically a metabolic disorder on the
cellular level. Cells can't get enough energy so they steal
it from other parts of the body. This results in sensory
and nerve damage.
It's still a general and presumed diagnosis. I have no
proof yet. We haven't been able to narrow it down to a
specific disease or syndrome.
I'm not done yet. I will keep fighting until I have a
positive diagnosis. I need to know what caused this. It
won't change my life but it could help JD. I need to know
what I have before I can have him tested for it.
So there it is. That's my sad story. Pathetic, though it
might be, it's my life and I have to live it. We can only
try to do the best with what we have.
Now I ask you... How do you sum this up in a couple of
sentences? How did I become deaf-blind? It's a tough
question, for sure.
In the end, it doesn't matter. "How did you become
deaf-blind?" It's not important. The real question is,
"what did you do after you became deaf-blind?"
Did you give up? Did you succumb to your fears? Did you
hide away in your home as life passes you by?
Or are you fighting? Are you out there trying to make a
life for yourself? Are you improving and learning to cope?
They are still tough question. Keep reading my blog and I
think you'll figure out my answers.

1 comment:

  1. Dot Bug - thank you very much for being willing to share your experiences via this blog. I appreciate the opportunity to learn more about living with sensory disabilities.