Summarizing my life with Neurofibromatosis Type 2

I had someone approach me to write my story to aid in lobbying Congress for research funding Neurofibromatosis (and Neurofibromatosis Type Two) research. The idea piqued my interest because, hey, I’m a writer! I’ve been doing it for so long and have a unique voice in saying things. I knew I couldn’t write a huge piece or an autobiography, but I thought it’d still be an opportunity…

Yeah, well, I had to work in a plea for funding in it, and I couldn’t have more than a page for my story. I could work in issues I’ve dealt with and family plights, but just a page!

I can’t write a story about what I deal with while having the genetic disease NF2 in only a page. Oh, I could summarize things in a bulleted list… but that doesn’t make a true case to politicians to actually give a care.

There’s also that aspect – politicians of the United States of America at the moment – that works against truly trying to coerce federal support toward researching a rare medical disease. After all, there’s a faction that thinks a physical wall is a necessity for national security, and that $5.7 billion is a worthy investment. That doesn’t touch on others who push for federal “aid” for multi-billion dollar conglomerate corporations who need no such help in order to profit.

Yeah, my story, as a short summary and plea for cash, would mean shit to that element of political America. Preventing a disease that affects about one in every 25,000 human beings on the planet is not something that these people are going to be sold on when it comes to listing ailments and hindrances in a few words.

Yet here I’ve written 300 and haven’t said a thing about my story. If a Congressional representative or the United States Senator ever reads these words is not something I expect. Nor do I expect to sell them or readers from the general populous on contributing to the NF Network and helping fund research and support for Neurofibromatosis/Neurofibromatosis Type 2 patients, but whatever. Here’s my story.

Insecurity isn’t a symptom of NF2, but at the same time, it always has been for me with thanks to having to wear thick, thick glasses and having odd, unsightly bumps appearing on me for some unknown reason as a child. It also made me a target of my peers – you know it commonly as a nerd being picked on by standard, regular guys who were taught by both the media and peers to do just that, treat the smaller fellow as lesser than themselves. I don’t know if anyone would give a damn about that aspect of life before knowing you have a rare disease that would further limit and impair you, but it was very much an aspect of my life that shouldn’t be looked away from.

To start losing your hearing suddenly in 8th grade as I did doesn’t bring support unless you’re around that generous sort that you see in movies or read about in fiction novels. Having hearing issues pop up just makes you a laughable complication for others who are at that odd time of adolescence too. I didn’t just start losing hearing in one ear but had gone completely deaf in my left ear while sound was fading in my right. All of this was caused by a benign tumorous growth on an inter-cranial nerve in my head. The fact needs to be known now that tumor growth on nerves is what basically is NF2.

I got diagnosed with NF2 at the start of high school and was given a hearing aid to deal with my hearing situation. It didn’t pave over my insecurity, or improve my vision, or make other people less judgmental. Ain’t teen years grand?

I’ve had multiple operations in my life on my spine, on my abdomen, on my hands, and on or near my brain, to reduce or remove tumorous masses. These operations have resulted in total deafness, a loss of gait and the ability to walk without physical aid. Inter-cranial tumor removal further impaired my vision and caused eye dryness which has brought with it corneal abrasions over time. That amounts to being deaf and blind. Now mix in loss of sensation with thanks to other tumors stifling nerves from working properly and it amounts to three basic senses the disease has worked against.

And yet, from things I have heard and seen over the years regarding NF2 and others with the disease, I’m lucky. I’m lucky I’m not wheelchair bound, I’m fortunate that I haven’t been unable to use physically implanted devices to bring back a degree of hearing (but not the greatest understanding of speech). I sure am lucky I’ve lived 39 years as of this writing without being killed by a tumor growing in a sensitive location (but, hey, it got close to that mortal feat when I was 37).

I’m unemployed. It’s not that I’m unable to hold a job or contribute to a professional environment… It’s just my limitations impair me and society itself looks the other way and follows the standards of employment that keep people like me on the outs. I’m not able to drive either, so going out and about is only achieved in the standard of a dependent. And with thanks to my visual impairment and mobility issues, that’s a growing dependence level of living.

None of what I’ve written here goes deeply into an anecdote about life or the plights of surgery and the nitty gritty of dealing with the medical industry. It doesn’t touch on the issues my family members have had to live with while enduring my issues (or anger and emotion we’ve had that’s been born through frustration). This doesn’t mention the missing social aspect of romance from my personal life, where I can be faulted as well as others judgments toward me and my health. What it does, however, is give you an idea of what NF2 can do to a person. Vaguely, yes, but it still tells you what the disease can do.

Now the question is, do you want others to have to live with this? Do you want children to be born with the disease and for it to be allowed to develop in full and impair them too? If the medical society can find a way to prevent or stop the development of NF2 in a person, wouldn’t that be so much grander for a person so they could actually participate in society as people? Oh, this is where blind capitalists scoff and think that type of rationale hurts the medical industry because it stops profit-driven aspects that are dealing with medical issues. Yes, there are people out there (…Congressman) who think the industry is the key and not so much the individual who needs to be cared for within it. By industry, I don’t mean the medical field and the quality of health care as-so-much the need, the want, and the ability to fulfill at-cost for a person (which leads to payment and profit, making the medical field a big business).

I’m a member of society who is closer to what Gene Roddenberry imagined society as in his Star Trek than the savage-capitalism, profit-before-people ideology that’s gotten too much of a push. Society aiding society and people working with each other to achieve is what comes off the grandest. It also comes off as the most foreign in the current state of America.

Nothing I say here goes into detail about the primary version of Neurofibromatosis. I’ll point you to Wikipedia to see more on that one. If you want to know more of the dirty details about Neurofibromatosis Type 2, venture over to NF2.is. If, by some chance, my words sell you on chipping in to aid combating NF2, consider donating to the NF Network.

While I know there are many with limitations and health impairments in American society and around the world, I just know what I have to deal with (and the limited populous also impaired by NF2) should not be ignored or looked past.

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