Thursday, August 21, 2014


This is a different kind of blog in the middle of the week, but I hope it reaches the caregivers and the associations dealing with this debilitating disease and they take heed.


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 for a rewarding reading experience.    





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