Neurofibromatosis
When I first started writing Michael’s book I had absolutely no idea
what his debilitating and disfiguring disease was called. I’d heard it
pronounced, but I couldn’t remember it or if I did, couldn’t have ever spelled
it.
Well, that wasn’t really what the book was about anyway. At least I
didn’t think so at the time. I wrote it to pay homage to a remarkable young man
who had lived his whole life at the mental age of four. The thirteen brain surgeries necessitated by
the onset of neurofibrometosis in the
first six months of his life had damaged an otherwise highly developed mental
capacity. Little glimpses showed themselves from time to time, leaving those
around him to scratch their heads in wonder.
I’ve known Michael since he was born. His father has been my good
friend for thirty years before that. So I think I’ve captured their
personalities pretty accurately. One of the things that surprised me though
when I narrated the book into audio form was the quiet influence Michael
radiated throughout his ever-growing circle of friends and caregivers.
Hindsight is always so much more revealing and it pointed up the wide
circle of friends and caregivers who influence and are influenced by people
like Michael. When I looked up the term neurofibromatosis on the Internet I was amazed to find the number of
societies and associations in existence. That speaks directly to the
significance of this disease.
Understandably, the story is fictional as are the names of the
protagonists. But that doesn’t detract from the underlying theme of care and
caring. I found the story to be hugely uplifting, leaving me enriched by its
experience.
So I wanted to reach out to the neurofibromatosis associations and societies wherever they might be
and encourage them to check out the book “Michael” at http://www.nemsi-books.com/?p=2033
for a rewarding reading experience.
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