Tag: Neurofibromatosis Type 2
When Doubts and Dollar-signs Muffle Daydreams
I have the conflict between concept and cynic playing out in my head. It/s an empty daydream at the moment that inspires this contrast “♪ and probably will be for life♫”.
In recent months, I’ve thought to start a fundraising campaign tied to the rare genetic disease I suffer from, Neurofibromatosis Type 2, you can find reads about my plight with that here on Johnny Fonts. I tried to fundraise in 2016 at Raw Charge and had it fail with no network support from fellow hockey blogs or SB Nation. Or many readers for that matter. “Deke The Deuce” didn’, it died.
That was straight finance. My passing thought this time is purchase-of-music through a charity album.
A charity album of songs provided by independent musical artists the mainstream doesn’t know for a widely unknown disease? Oh, that has #FAIL all over it!!… or does it?
It’s just a thought. I have no clue on costs, artists who would agree to partcipate (tough I know performers I’d approach about this), or even the ideal medical institution researching NF2 specifically. I just know it’s a path creative and challenging. Especially for someone in the state I’m in.
I want to save others and fight the suffering, that’s grounds to seek charity… Can I achieve via rythem, harmony and goodwill? One can dream…
Consistant music in lyrics and genre, album art, costs, living with that black hole… The promo challenge to sell any music to make any mone… The list of challenges is intimidating, as is the doubts…
So is life with NF2.
I wrote these words 25+ years ago and they seem fitting here:
[…] And so, the damned strides on
“Destitute”, circa Oct. 1996
Fear in his eye, courage in his heart […]
It’s a daydream, and I may very well try it…
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.
Read MoreTen years gone; the life and times of a late-deaf adult
1997.
As I said in October, I had graduated from High School that year, forgotten in a huge senior class at East Lake High. There was one quality I had, though, that stuck out which people may remember me by — my hearing was shit.
After graduating in June of that year – with about 25 percent or less of my original hearing, I basically did nothing. I was reached out to by no one and didn’t attempt it much myself because I was the wall-flower… I couldn’t hold a conversation with thanks to not being able to understand what people were saying (even with the help of a hearing aid). And at age 18? Who’s going to put up with that?
I sank into depression and my health deteriorated. This hearing situation had already led to my decision not to attend Flagler College in St. Augustine (where I had been accepted the previous spring) and now I was isolated and alone in a world I couldn’t take part in. My balance became somewhat less dependable than tuning into MTV and seeing a music video playing. I wobbled and swayed all over the place and depended on leaning where and when I could, onto stable and solid things… Anything to keep me upright.
that’s little ole’ me, circa November 1997
It was sometime in October of that year that I had an MRI performed on my head, and in a matter of days had a doctor tell me flat out that I could go to bed one night and not wake up the next morning. A 7 centimeter tumor effecting blood flow and cramping the brain will do that to you. Acoustic Neuroma is the scientific term to describe this, but the truth is it was the end of one life and the beginning of another…
It’s been ten years – not by choice, not by design, but by inevitability – that I’ve been deaf. Ten years since the natural hearing world escaped me and I was plunged into a more difficult version of society where one attempts to fit in while feeling like an outcast. Sure, I use a variation of the cochlear implant now (and have been for six years) and am doing quite well with it but I still haven’t turned a corner to make conversation easy to understand and take part in with strangers. I miss that the most…
It also doesn’t begin to describe the immediate aftermath aftermath — being trapped between worlds: A deaf person in a hearing world, a hearing person in a deaf world where those around me refuse to adjust and demand my adjustment to them. Or being thrust into the paranoia filled bigotry of the deaf community where the hearing (or late deaf) were not welcome unless their commitment to the deaf life was total and utter.
Of course the flip side of this is that it got me involved on the Internet, which led to a job, which led to my web design talents, which led to a certain legal threat and a lot of pluses and minuses along the way.
10 years gone, and I’m still standing.
10 years gone, I’m still left wanting.
