Tag: nf2
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…
An Open Letter Request to the Tampa Bay Lightning
Please note: note: My apologies for poor spelling and grammar. While I have a reputation for typos, copy-editing with ighly limited vision is a challenge.
To the relevant Department and Personnel og the Tampa Bay Lightning Franchise:
Sirs and Madams, to the relevant Department and Personnel og the Tampa Bay Lightning Franchise:
Sirs and Madams, I have a large request., I state this as a man no longer relevant in coverage of the franchise and it is arguable if I ever did.I was not a press-box resident, nor an employee of a major media entity, though my writings did help found SB Nation’s Raw Chargw which I also ran from March 2009 until October 2016.
This isn’t about me, yet I am an example of the plight I request the franchise’s charitable involvement in.
Sirs and Madams, I suffer from a genetic disease that effects a sliver of a fraction of the population of the United States and the globe. My request is simple (but much more complex than this writing can show): For the Lightning franchise to help research Neurofibromatosis Type 2.
Neurofibromatosis Type 2, or NF2 for short, is not cancer. Its effects are disabling in mobility impairment and robbing patients of hearing by way of Acoustical Neuromas.. In simplicity, nerves grow tumors in highly sensitive areas of the body (brain, spine), leading to impairment or death.
My request is made with youth and future generations in mind. Finding weapons in this battle — or one hell of a netminder to stop this opposition’s charge (how are you, Andrei Vasilevskiy?) – is a necessity. Help from the high is as well, sus this open letter to you.
My one situation is irrelevant, but the same if a smidgen of insight – I’m lucky to be alive at this point in my life. Blind, naturally deaf, loss of sensation/coordination in my hand and mobility-impaired… But still here and gladly. Others eith NF2 were not so fortunate to last until middle age (and I nearky was in that group).
I’m certain that a research arm can be established with USF Health, but I also would not be shocked to hear of a more genetralized research body already out there and charitably funded by the Lightning. While that is to be applauded, a generalized researching project spends more time on medical issues that hit a wide number of people. This is why NF2 is a backburner medical issue: As I already said, NF2 effects only a sliver of a fractionn of the population. Stopping calamities hitting many tajke priority over dilligent work to aid the few.
I’m asking the Lightning organization to make an exception.If a high class pro sports franchise won’t give to fight such a niche malignance, who will?
Thank you,
John “Johnny Fonts” Fontana
P.s. For the sake of sayi g, I kegan blogging about the Lightning in February 2004 while I recovered from a pair of spinal-tumor operations. There was only a scant wreb presence of Lightning fans online with most fan web pages being inactibe since the late 1990s.
Blindness and failing hand prevent me from contributing my voice to the sports world. I miss hockey Iblogging. I miss the Lightning.
A final note: My apologies for poor spelling and grammar. While I have a reputation for typos, copy-editing with limited vision is a challenge.
P.s. For the sake of sayi g, I kegan blogging about the Lightning in February 2004 while I recovered from a pair of spinal-tumor operations. There was only a scant wreb presence of Lightning fans online with most fan web pages being inactive since the late 1990s.
Blindness and failing hand prevent me from contributing my voice to the sports world. I miss hockey Iblogging. I miss the Lightning.
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 MoreI never heard it but I knew the unknown
You ever come across something totally foreign to you and yet you distinguish it? You know of things even if you have never physically interacted with them? I’m not talking about watching commercials for amusement parks or other famous locales and then going to them. I mean something more personal and yet something more physically removed than having seen or heard whispers about an item and then having it thrust on you by chance. Read More
The road to recovery becomes the highway to…where?
I’m choked up upon reflection this afternoon. I just had physical therapy formally end. Therapy that was assigned to me after the shit hit the fan in December 2016. It’s also exactly one week after I met the surgeon who saved my life on Dec. 6th, my opportunity to express my gratitude to the exact man who is a direct and true hero for my life.
Delusions had me thinking I really was dead in the immediate aftermath of emergency brain surgery. Logic, reality and time have made me wonder just how the hell I survived. Knowing my condition, the infamous genetic disorder NF2, and my medical neglect in recent years (lack of MRIs and communication with my doctors), it just mounted things against me.
Unfortunately, I have other things against me now that logic and reality sway before me in a mocking sense all the time. Lack of social interaction, lack of romance, lack of work, little productivity, empty dreaming of achievement…
Last time I dealt with these morale haphazards was the winter of 2003-04. John J. Fonts Esq., the formal version of my cutesy nickname, was once again recovering from necessary surgery. This time, the catastrophe looming without surgery or with a screw-up during the cut-cut was paralysis. That was defeated, say thank you and praise the maker. What got me away from that maize of morale post-op was web design, sports and being a pioneer of the NHL blogosphere with the birth of the Tampa Bay Lightning blog Boltsmag.com. Boltsmag has turned into Raw Charge on SB Nation; you can find my old posts through the archives. It may not be an easy feat though. The site’s birthday is February 13th. Next week.
That was then though, this is now. And even then, the site did not financially show accomplishment to me (meaning ads, which I hate, did not pay me back or something). It did give me something to focus on in my unique voice as a writer, but it (and Raw Charge) were not much of a rewarding time investment.
Creativity and writing may still be where I go from here; I’ve been working on a potential book of poetry. It would be stuff I’ve written for the past 20+ years. I’ve also toyed around with lyrical verse and trying to get music made to turn it into song. I don’t know how to have a legit career as a lyricist but that would be an adventure worth taking for this man of rhyme and reason.
I’ve survived, yet I’m lost. I’m happy to be here but I’m in a foul spot of ugh, hold the pickle. What comes next may be nothing, it may be grand, and it may be a fulfilling whisper that makes me feel accomplished. Whatever the answer is, it is still in the process of becoming.
Regarding surgery and the menace that is NF2
There’s another aspect to talk about regarding life and where things for me stand at three weeks after I had an emergency brain operation which I talked about last week. What I focused on squarely during that write-up was post-op and the world I was involved in as I tried to grasp reality again. Just for the sake of throwing out the key words: Delusions, mental lapses, reincarnation.
Yeah, but what about before all that, what about pre-op?
While I have no recollection of Tuesday, December 6th and the events that led to surgery, I can remember life leading up to this incident just fine. And in the days before December 6th, it did come up where I thought of grander concepts and my medical condition in general. And I didn’t want anything to do with a process of medicine.
Let’s take a step back here and start with my condition: A rare neurological disorder called Neurofibromatosis Type 2. I’m deaf by way of it. I’ve had a few operations to remove tumors in my back and head. I know all the fun and games of the hospital (…which further makes me pissed off at the “ICU” I dealt with earlier in December, which was nothing of the sort, but I digress). At 37 years old, the concept of NF2 treatment is what pre-op was about. My thoughts leading to Tuesday, December 6th were a shrug and a rude hand gesture or two toward NF2. While the menace was and is part of my life, I wanted to live my life firstly and forget about the medical condition. I wanted to be and not get lost in MRIs or neurological clinic visits and such. It’s those aspects that dominated thoughts of pre-op: The fact I was overdue to have a scan or see a neurologist just for shits and giggles.
Being is what life is about; most of us toil through what our world offers. That’s what I wanted; not to get distracted by what could happen if I don’t, but to foil away against what was happening with life. NF2 can go fuck itself, and if it was going to kill me then oh well, too bad, so sad.
Yeah, and then we move to today and where I am at the moment and I’m ready for war. Like I said in the write-up the other day, I was dead post-op. Knowing that (or experiencing that) riles me up inside. I had to experience this shit and you’re still a genetic menace in my body? Fuck you. Fuck you, dearly [Editor note: f-bombs are fun sometimes and fitting]
I’ll have an MRI in the next six months, I’m sure, and will likely see one neurologist or another just to have a social sphere and good times… All because tomorrow is dictated by what the disease brings to the table. I’ll still foil and toil away at life as it matters, but this genetic condition ain’t playing well with me and I sure as shit don’t want to be nice in return.
Surgery, mental state…. All the fun and games of an emergency operation
Where I am sitting tonight is two-weeks after an emergency brain operation that came out of nowhere. And in reflection, two weeks ago upon regaining a conscious state post-op, I was dead, due to be reincarnated. I didn’t know about surgery, I just knew that I was waiting to be picked up by someone else and move forward into a new life with them as a partner.
I keep reflecting and can just assure you very much I have no recollection of Tuesday, December 6th [author’s note: I got dates wrong for the week this went down; my situation began on Monday, December 5; memory is weak if not nil on that date as well]. One piece of news I found out was that I was ambulanced to Tampa General Hospital, and that memory actually surfaces (but not clearly). Truly, though, things did not clarify at all until I was in a supposed ICU area on Wednesday that was to be the centerpiece for reincarnation. As someone who has had many a surgery in the past and knows Intensive Care Units, this wasn’t one. This felt like the dorm at a college, minus the social interaction. This wasn’t a high-end facility either, it was a waiting area with TV promo video.
Folks, does that seem random? It’s delusional, and that’s where I was for most of that week. It’s how far gone I was. Oh, and Wednesday I found out that I had died in a car accident with my parents. That’s what I remember. I’d find out I had nails in my head and such and didn’t know the extent of my injuries (or what really happened). I just was gone and in a process of becoming again.
I write this random stuff down and it sounds crazy. That’s how far gone I was post-op.
It wasn’t until Saturday, December 10, that I knew I was alive (and the reincarnation thing was a delusion). I had moved to a show-area on the Tampa General Hospital 4th floor and things had taken a more life-defined theme. Things were happening and everything was go-go-go, not the ultra laid-back, no-interaction crap of the days before. I wasn’t lost. At the same time, I still didn’t get what had happened to me. It wouldn’t be until later that weekend where I got told directly by family and friends about what I had gone through.
Does any of this make sense? It shouldn’t. It just shows that John J. Fonts Esq. was in a very odd place the week of December 6, 2016. Where he is now is recovering from surgery. Mentally, I’m spot on and ambling forward as I should, with physical ailments holding me back mightily (a fight to deal with). Two weeks ago? I don’t know how it started, and in general I ambled through crazy until reality reintroduced itself to me and I got back to the land of the living.
Ten 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.
Downed
T minus a day and a matter of hours.
I ranted to a few people today about how I am right now and I really came to the clear realization I don’t like focusing on myself. I mean, I’ve been called selfish when I’m being a pain in the ass but I’m high strung with certain things — picky-choosy. That’s not being selfish. Being selfish is doling out one’s life over and over again and making yourself the subject of items. I don’t like to do that when I have bad news to share, I’d rather share the positives and we all know things aren’t exactly positive for me right now. Then again, i can share my negatives when I know I’m truly SHARING with someone and it isn’t just a casual relationship.
I also need something to prop me up, I guess, emotionally. Fluff my ego and all that. Friends have wanted to help me out if they can but there’s not much one can do to help. Some have said “I wish I could take away your problems” — that’s likewise. Others can just agree that things suck right now and get brash on the fact I’m down… While others ignore it, maybe it’ll go away?
A venerable cornucopia of reactions to a NF2 patient who’s about to have an operation on his spine.
In other news, I forgot to tell you all that Lou got back to me with lesson four and….
Loved it!
Oh, yeah, I still need to work on things. For all of my reviewing of the story (previously published on this site, “Thank god for Arthur” and my editing down of the story, it still had a few flaws, but it really came out good. I need to be more clear with italics (I tried a technique some authors use with italicizing personal thoughts, which was a no no),and get more comfortable with dialogue (I’m actually comfortable with it, it’s grammar around dialogue and quotes that I need to work on) but all in all…
“Mavelous, dahling!”
Any requests to see the finished product?
