Monday, January 4, 2010

"Tis true my form is something odd..."


I often hesitate to admit that I have Neurofibromatosis-Type-One (NF-1) because people's attitudes towards me having it have caused great emotional pain that has often been harder to live with than any pain caused by a neurofibroma. Meanwhile, it is important for me to mention the condition because not only has it shaped my art-work, but I owe the community of those diagnosed with NF-1 as well as NF-2, any awareness that can be raised. Joseph Merrick, the man associated with Elephant Man's Disease (often confused with NF) used to sign his letters with this poem by Isaac Watts:

"Tis true my form is something odd,
But blaming me is blaming God.
Could I create myself anew,
I would not fail in pleasing you.
If I could reach from pole to pole,
Or grasp the ocean with a span,
it would be measured by the soul,
The mind's the standard of the man."

Admittedly, my case of NF is nothing, nothing, nothing compared to Mr. Merrick's, but the emotional pain, brought on by my reaction to other people's remarks, has evoked a very similar response, especially as a child.
With NF-1, a consequence is a minimum of six cafe-au-lait spots. The size of the spots are from 1/4 inch (5mm) in children and 3/4" (15mm) in adults to several inches in diameter or larger. As a child these spots came about before the age of two, but as I went through elementary school they became a source of shame. Once, I filled the family bathtub with very hot water, then poured in an entire can of Hill's Brothers Coffee into it; hoping to take a coffee-bath to stain my skin to match my spots. I had put water proof band-aids around every spot on my body in an effort to match them to what I hoped would be my coffee stained skin. It was not until I saw the coffee grounds at the bottom of the tub that I realized I should have used instant coffee --if I wanted to color the water-- so, the following day, I tried to do it with a jar of Taster's Choice Instant Coffee. These experiments were not appreciated by my parents, but that as they say, is another story. The presence of multiple neurofibromas (skin bumps) is an important diagnostic sign of NF. The number of these varies widely among affected individuals from only a few to thousands. (I have thousands.)

"Skin neurofibromas may develop on the face or exposed areas of the arms or legs. Growths can also occur around the nipple (periareolar neurofibromas) which can be distressing. While disfigurement, and fear of disfigurement, are often major concerns for those with NF-1, not everyone reacts the same way to complications that affect appearance." 

These growths are comprised of cells that surround the nerves. They may occur anywhere in the body where there is a nerve. On the skin they appear as bumps. Often they begin to appear at adolescence, such as the case was with me, and because this can be a particularly trying time under 'normal' circumstances, the growths popping up all over me during this time of my life, made me isolate myself, due to the ridicule and teasing of classmates. Ridicule and teasing seem like small consequences now, but, at the time, the emotional (and often physical) pain was severe and frightening; especially since nobody in my family had this condition and very little was known about it then.

When I was born, the fact that I had NF was a bit of a mystery as the belief was that this condition was strictly brought on by heredity and was one that did not skip generations. In those days it was called von-Recklinghausen's disease and no person on either side of my family had or knew anything about this condition. This fact caused extreme tension in the family resulting in arguments brought on by folks trying to place the blame on someone.

It was not until the late 1990's that I was told that new research studies discovered that the  first generation NF-1 could be the result of the mutation of Chromosome #17,  and this was information that I learned by chance. I had been working at Hunter College in New York City where I took the black and white photograph, at the top of this post, for a brochure cover that I designed for them.

The staff, teachers, and students at Hunter College's International English Language Institute talked openly about me having what they thought was a form of Elephant Man's Disease despite my insisting this was not the case. Still others prodded me to try skin products to remove my bumps that they perceived to be a case of bad acne, and some folks insisted that because of the bumps I had a form of HIV. None of this was the case but the mystery of how I happened to have NF-1 remained — even after traveling out of state to see a genetic specialist. Then finally, on a sunny autumn day while walking home from the gym, a woman chased me up Columbus Avenue (an upper-west-side street in Manhattan), and grabbed my arm, saying, "You have NF-1, don't you?

I was aghast and she could see it immediately for she apologized, saying that her young daughter had just been diagnosed with NF and that up until the time she saw me walking up the street, she thought her daughter would be destined to a life of isolation and not a carefree one like I appeared to have. She went on to say that I must be so pleased to know about Chromosome #17 and how it had now been identified as the chromosome which when mutated caused NF. These were Pre-Internet days and I did not know this, nor did my general practitioner.

My case is mild and while some folks with NF-1 can have a tumor on their optic nerve, thankfully that has not been the case for me. In my case with NF-1, I have thousands of neurofibromas all over my body and when they become too painful (they are wrapped around nerve endings) I have them removed. They can grow back once removed, and when they do, they may become larger. Additionally, depending on the size and location of the neurofibroma being removed, recovery can take a few months, so I don't opt for surgical removal unless the pain from the growth is severe.

As with other folks who have NF-1, the consequences have impacted my ability to be considered for decent employment and there have been many awkward social implications throughout my life in terms of prejudice from those who fear disfigurement. Links to information relating to what I've said about Neurofibtromatosis as well as other pertinent information an be found at the end of this post. I may elaborate on NF-1 as my blog evolves, but  for now I will say, having NF-1, has resulted in strengthening my powers of observation and developing a sensitivity towards others which I'm told is reflected in my writing, photography, and volunteerism.

For further reading, see:

2 comments:

  1. What a beautful post. I hate to know that you've been hurt because of the cruelty other people can show. What drives us--humans-- to use the disadvantage (or what we see as the disadvantage of another) as a tool for mockery is beyond me.

    Know that you can find comfort through the soilidarity of freinds.

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  2. Thanks for your kind words, Ali. I have "shopped" a book (that I've written) on some of the consequences of NF to various agents. I have written my book in a way, that it will hopefully raise awareness for anyone who has been subjected to cruelty as a result of their "disadvantage" - no matter what that disadvantage may be.

    Meanwhile, I have many friends and a beautiful garden, so sometimes I wonder how I could have ever taken human cruelty to heart.

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