John is a neurofibromatosis type 2 sufferer and this has led to various circumstances and anecdotes in life including surgery. He’s also a late-deaf adult who has sound by way of an implanted device. Living experiences are also in some of the blog posts.
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 update from a blind blogger
You cannot correct severe cornea scarring with regular, commercial eye rewetting drops. To push this as a remedy amounts to inaction. Especially when the patient is on file w3ith the medical organization with their condition, and the patient has been using rewetting drops regularly for decades.
Basically, without saying shit, I’ve been told my eye condition is either a risk or untreatable; enjoy what )little_ you can see while you can. And we’ll see you in three months!
Why tje lack of new posts? I’m in hell.
I need to post this update specifically because of frustrations that are dominating me.
It ain’t much to say: Blindness and physical issues limiting my typing ability have stunted and stopped this blogger. And it sucks. NG2 sucks.
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?
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 More
It’s not very clear how to recycle Cochlear sound processor technology
I want to recycle Cochlear sound processor technology as well as accessories and Cochlear doesn’t lay out how to do that. And that’s bad. Read More
Suffering an unsound situation – Epilogue: Sunrise
It’s odd when a song takes a new dimension in your life and you sob while listening to it.
I’ll admit, I’ve been locked on to The Beatles and their 1969 classic audio impairment suffered by chance mid-summer.
Mr. George Harrison, who penned “Here Comes the Sun”, was inspired by way of coming out of a (repeated) boardroom blandness (the downside of Apple Corps LTD for the members of the Beatles) and seeing London delighted in the sunshine of spring. In my case, the silence is a night that lasted far far too long.
In some ways, this moment of my life is a learning experience as the technology difference between the Nucleus Freedom and the Nucleus 6 (which I was upgraded to) is profound. Many similarities are there, too… especially the root of it all: Sound.
It’s the dawning of a new day in my life, yet it’s a resumption of what I’ve known naturally and artificially through my existence. I don’t want to be without it again. It stands in its existence as a verification of who you are, where you are, who others are and the textures of life. Sound has that dimension. It’s not as if those who embrace deafness can’t find these through visual means and other senses. I’m just not one who embraces the silence nor found a direction in life as a late-deaf adult.
Where things go from here, I don’t know. That’s life, though, isn’t it? This is the dawn of the resumption of an aspect of life that makes me elated and optimistic at what the next day holds and where it will take me.
This Labor Day Weekend, in memory of Jerry Lewis, let’s fight MD
My reaction to the news of comedic legend Jerry Lewis’ passing two weeks ago was to urge friend son Facebook to make a donation to the Muscular Dystrophy Association, the organization Jerry work for with his annual Jerry Lewis MDA Labor Day Telethon which aired from Sunday night of Labor Day weekend until Monday evening on Labor Day.
It’s short notice and I would imagine more people are having a weekend than on the web reading blog entries from someone like me (“Who the hell is this guy?” ). But I think we, the American public, should act this weekend for Jerry and for those stricken with Muscular Dystrophy.
I posted this on my personal Facebook account, aimed at friends. I post it here:
I’m not playing on this, ladies and gents: Starting tomorrow around 7 or 8 PM EDT (or was it 9? I forget) we may want to make donations to the Muscular Dystrophy Association (and press the idea until Monday night with friends and others we have contact with).
It’s in honor and memory of Jerry Lewis.
The idea of a time-to-do-the-deed is simply there for viral sake. As was already noted, the annual rite that was the MDA telethon’s hours of broadcast was from Sunday night until Monday evening.
It’s in honor of Mr. Lewis, ladies and gentlemen. It is out of sympathy and support of those battling MD. The time is not exactly prime for an effort like this, as the damage and suffering in Houston caused by Hurricane Harvey has already drawn generosity from America and the world…
Just consider the donation. the battle with MD goes on with or without national focus. It’s just going to be a dimmer battle without Lewis at the helm.
The MDA donation page can be found here.
Suffering an unsound situation
A little piece of electronics fell a distance that was just over five feet. 60 inches of travel, making contact with a wooden floor. It wasn’t a heard action. It wasn’t an outright noticed incident either. It had fallen from behind the ear of this author as he sat on the edge of his bed and made preparations for use of the device itself.
And the only action derived from noticing the fall and reclaiming the object has been silence.
I went stone deaf in 1997 after a necessary operation to reduce/remove an acoustic neuroma; an inter-cranial benign tumor from my head. That tumor had already played a part in me losing hearing in both my ears during the previous four years. The surgery, for the sake of having a life, had to happen though. When the operation occurred in December ’97, I was also implanted with what is known as the Auditory Brainstem Implant, a variation of the Cochlear Implant – a device that brings the hearing world to those who are implanted with it and who use an external sound processor to enable it. For a deaf person to adopt this technology is a chore – to learn a new dimension of life. For a late-deaf adult? It’s a miraculous resumption of a realm of living.
I’m living in silence right now and I’m in hell.
I 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.
That was then, this is Sound
A Spectra-22 speech processor is a bulky piece of hardware, that’s all I can describe it as after eight years of toting one around.
For those who are unaware (and the general web-cosmos out there), I’m deaf. Stone deaf. I lost my hearing by way of genetic disorder requiring surgery at the age of 18. I was implanted with a version of Cochlear’s Nucleus-22 processor (known as the ABI) but didn’t go through with having it “turned on” (so to speak) until October of 2001.
…and if I knew how well I would hear with this implanted device, I would have gone through with it much sooner.
The thing is, with the implanted device, you have had to wear body-worn equipment to make it work. Stuff on your person. And for eight years, I’ve been wearing what essentially is a obsolete piece of equipment. The Spectra-22 was originally state-of-the-art in about 1989 – give or take a few years. While the entire concept of a late-deaf person hearing again is fantastic, technology sometimes does limit as much as it enables. Like in my case. Read More
Cane and Able
Before and after a major back operation in 2003, I had been using a walker due to the fact my balance and my gait were so far out of wack that I needed to lean on something or I couldn’t remain upright… Or I just couldn’t get from point A to point B.
In May or 2004 — about six months after surgery — I switched from walking with a walker to walking with a cane. I quickly adjusted to life with another assistant device always clutched in my hand. I had just finished up with physical therapy, and I had been hoping I’d be past the need for anything to help me out.
So now it’s August 2008… Just days away from an anniversary of another major operation. Instead of marking the occasion with downer stories and worries and what not, I made a little choice during the day on Friday that’s effected my entire weekend and maybe my day-to-day life from now on.
I haven’t used my cane.
I own a pair of folding canes — one for the yard, the other for general use. I also have a solid wood one. All of them are scattered around the house, but out in obvious places as just-in-case reminders. The thing is, I haven’t needed them. I haven’t wanted them. I haven’t sought them. After 4 years of using them, I’m long overdue to take a liberating step without assistance. And that’s what I’ve done. Neighborhood walks, shopping walks, etc. It’s been a challenge but also a boost to my own self confidence in my physical ability.
It’s a small thing, really… And if i were sitting there reading this blog post, I’d be bummed out at the topic in the first place. But this isn’t supposed to be a post about tearing down as so much building up. A long overdue buildup. We’ll see how long this lasts.
So I’ve had my artificial means of hearing hooked up and running for more than six years now… I don’t brag about it much or talk about it much because every time I get confident in something audio-wise, I then get into a social situation and end up getting sent back to feeling outside the hearing world again because I can’t understand the conversation.
Of course, I can revel in the fact that I can enjoy music again. I have been able to for some time as I think it’s been a tool for me to adapt back to the hearing world in one way or another. Sort of like a personal configuration utility for my brain — I remember how certain songs sound or certain tones I should be listening for — a cymbil crash perhaps, maybe the backign orchestra section jumping in during the refrain to “Hey Jude” — and press myself to hear these things. I use it as a gauge to see how well I am doing.
That took on a new dynamic last month as I had two cords, termed as Personal Audio Cables – sent to me by Cochlear Corp. These two wires — for personal media players or hi fi stereos/TV’s/computers — let me connect my body-worn speech processor directly to the aforementioned objects so I hear the tones or the music directly instead of trying to sort things out through a set of speakers.
But lets dispense with the technical crap. I got these things in January and I unpackaged one of the cables. I connected it to my PC speakers and then turned on iTunes… pulled up a song and started to play…
You seen the Matrix?
That scene where Neo gets combat training information uploaded to his head by Tank? It was kind of like that.
“Hey, I think Mikey likes it. Want some more?”
Now, nothing beats hearing and feeling music coming through the air and through the speakers. Nothing beats listening to smething in surround sound (for example) where you feel the sound waves and it adds to the effect of whatever you are listening to.
That aspect is lacking. But the aspect of having music beamed directly to my head? I’ll take it any day of the week. It’s been so awesome that I bought an iPod Nano and am experimenting with music I’ve never listened to before – which I wouldn’t try much when I was relying on the speakers alone.
Ten years gone; the life and times of a late-deaf adult
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.
One time of year I always love is when I have to depart from the sunny and just-too-damn-humid climate of Tampa Bay and wind my way to the original sprawl-town-USA locale of Los Angeles — which has actually started to go back to the concept of rail transportation and it makes getting around a snap compared to Cars-only-screw-pedestrians Tampa Bay. The trip takes place in the fall as part of my annual checkup and ABI tuning at the House Ear Institute near downtown LA.
I’ve stayed the last few years north of the Mid Wilshire center, not quite Hollywood, not Downtown, not Wilshire and not that great a hotel but it worked in it’s simplicity. This time around, I pampered myself and stayed downtown at the Westin Bonaventure. I haven’t stayed at a hotel that nice before and a three star rating from certain online travel companies seems cruel. At any rate, the location is extremely centralized — blocks away from subway access, shopping, Union Station (Flyaway is a blessed thing) and what not. It was a bargain compared to my normal hotel – so I paid a few extra bucks to stay there.
What I didn’t take into account was being out of shape in my post-op condition. I also didn’t take into account my unfamiliarity with the building would lead to blood, pain, and embarrassment.
2400 miles from home without anyone to hang out with – I go stumbling around the Galleria in the first few floors of the hotel and try to find a skybridge to other buildings and there shopping offerings.
Cuz what else are you going to do when you’re bored and have a little cash to spend besides shop?
So I find this exit to a skybridge — whoo hoo! — and start walking down a long corridor with skylights. I ignorantly think I am on the skybridge itself (the Bonaventure has several and ALL are uncovered) when in fact I am walking beneath the pool deck/patio of the building.
So I come to the end of that hall and find a pair of double doors saying thank-you, leaving-the-hotel, blah-blah-blah…. I can see a flight of stairs down and a flight of stairs up a short distance in front of me. I swing those doors open and walk a few steps — never observing the two steps down immediately in front of me.
I tumble and smash my face into a concrete-ornamental-edging at the side of the wall. I wither and moan in pain. I’m shaking, I’m bleeding, I think I’ve broken my nose.
2400 miles from home, no family in the greater Los Angeles area… The gimp-with-a-limp has worked himself ineptly into a fine mess.
I try my best to collect myself. Standing up — no, more like staggering to my feet. I get my bearing and see those stairs I missed, I also see the blood all over my hands and mutter a whiny “Oh shit” in response to this. I stagger up those steps back to those doors I mentioned… I find them locked from the outside. Imagine that.
Looking back, it feels like an eternity trying to decide what to do — go upstairs to who-knows-where or down to street level? I chose the former as to the latter and I find the pool deck of the hotel. I’m too shook up to really know if anyone who I passed spoke to me or even acknowledged me as I walked back to the hotel with blood flowing from my nose.
The fallout of all this is me walking bloodily to the lobby and asking for help, and the hotel springing to action to take car eof one of their customers. I appreciate the hell out of that but I’m stille mbarassed by being there while a convention was gathering and people checking in and out and what not. Of course, hotel security took care of that by getting me behind closed doors and takign care of me…
Probably the most anecdotal happening in LA in my time visiting the City of Angels on my lonesome. This would only have been better with company
A month later
So it’s exactly a month since surgery-eve and I’m doing ok physically… Aches and pains still but I’ll manage. Not wanting to go out in public much due to my eyes not being tip top, nor my hearing, or my hair for that matter. I’ll live though.
There are some things starting to get to me though. I guess I was spoiled rotten during my hospital stay and my recovery and now I feel like I’m socially in a black hole. Limited reach outs from friends, limited shout outs and more, and less.
There’s also a lack of focus I am experiencing right now that un-nerves me. For the past 2 weeks I’ve been spot on with focus. On the ball. I see something that needs to be done, I do it. If someone else has something that needs to be done and isn’t sure of steps, I consult. I consult when not requested (and not in a rude way, it coincides needed productivity for a dormant product). I was all over the friggin’ place. AND I was hitting the ball out of the park on this shit! It was incredible, it was a rush…
…It was temporary?
I’m procrastinating more right now — with incoming emails, with to-do projects and what not — than I have at any time since I went to the hospital. There’s just this… social dread? I dunno… Part of me wants to get it done, knows I gotta get it done, knows I NEED to get it done.
The other part of me wants to chill out and surf the web and wait for someone to distract me. The people I want to distract me get credence while the people I don’t drive me back to work.
How about that? “Test your worth to John! Send him an IM during anti-social/anti-productivity hour and if he drops you for a project, you know your value!”
Newest skill test at the state fair, ya’ll. :-p
Oh, one other thing that is getting to me lately… Why can’t I enjoy movies any more? I feel a horrid pain when I watch Superman Returns (who hasn’t?) due to Bryan Singer’s epic scoping of the film and lack-of-editing to make Superman seem more likable. I saw The Two Towers before surgery and thought it (again) a disaster of editing proportions. That’s what I am seeing everywhere — edit, voice-over, edit, edit, chop, dissolve, blah, blah, blah… And these aren’t action sequences where I see them (most of the time)! Is it just heightened perception or should I burn my DVD Collection, get rid of my cable box and renounce Speilburg?
do not hate, ren-o-vate!
The only thing that blows harder than being stuck in one location while recovering from a major operation is being stuck in one location while recovering from a major operation AND that location being under renovation.
I mean, I’ve been home about 3 weeks so I really shouldn’t be bitching but having my bathroom totally demolished (tub removed, tile removed, vanity removed, mirror and medicine cabinet removed, etc, etc) makes things just a LITTLE hectic. I also feel bad for my younger brother who is doing all the work — kicking ass and taking names of course, but it’s a lot of work.
The new tub is in place now, that’s nice. When I can actually bathe again and use the facilities in peace will be even better. Maybe by the end of the month? **Shrug**
So where was I?
Oh, yeah… Dwelling on inevitability. Surgery. All that joyous stuff that makes life grand for me. August 7th, 2007 was an extremely surreal experience in that my focus had to be elsewhere instead of impending doom and gloom (thank you Oren Koules, Jim Sherrin and Doug Maclean). Surreal may be a strong word for it. A grand, welcome distraction might be a better phrasing. Having a friend come over to spend some time with me and further distract me only aided to things.
The next day was no better – wanting to deal with that story and yet lying in a hospital gurney most of the day while waiting an angiogram: the pre-operative procedure as bad as I dreaded (but with a great staff of physicians trying to deal with my issues and some medical breakthroughs since my last angiogram that kept me from being bed ridden).
You know, I feel like I’m being shallow in the details but at the same time — there weren’t many meaty details before I was trucked off to the ninth floor at Tampa General Hospital where I stayed overnight before surgery. Besides pain issues with thanks to the angiogram, everything went swimmingly.
And how can I properly term my stay at TGH besides saying I was surrounded by good omens and positive energy? Days previous to surgery, I’d gotten a religious card sent to me with the only Patron Saint I identify with. It’s sorta grim but after I learned about him (and wrote about a poem where I invoked him) I didn’t see it as an ill omen as-so-much familiarity. I can deal with familiarity.
When I got to the ninth floor, who greets me warmly but an old friend from High School who works as an Registered Nurse on the floor? It was good mojo to see her, realize who she was and have come right up to me and say hi.
Another thing that was positive and yet drenched with negativity was a nurse I had overnight who I couldn’t understand due to her accent. She was warm, pleasant and tried her best to overcome things and I found myself mad that I had gotten frustrated with her.
A week to go
It didn’t hit me until yesterday. July’s over and my operation is scheduled for August 9th… That’s next week.
So much I don’t want to do, so much I want to avoid, so much I want to be irresponsible about… and no time for it.
unwell and unfair
It’s not bad enough that I’m going under the knife in a sensitive procedure early next month… I gotta have an angiogram the day before the operation to boot.
First off, the description of an angiogram doesn’t make it sound so horrible — they’re checking the blood flow in arteries to make sure there is no blockage and such… I’ve had one before and the procedure itself was no biggie.
Yeah, and then the pain killers wore off.
That procedure was exactly 11 years ago on the 16th or so. I wasn’t just bedridden in the hospital after but also an enormous among of discomfort as well.
“Discomfort” being insurmountable pain in my leg and abdomen. Being told not to move didn’t help things.
Maybe angiograms have improved in 11 years time and post procedure discomfort level is much less than I experienced in 1996… That’s about the only hope I can grab on to with this. An Angiogram the day before an operation on my noggin’… I guess Karma’s biting me in the ass (again) for whatever wrongs I have committed in my life, cuz all I have is dread now for August 8th and beyond.
It’s been a while since I was concerned about my health. It’s also been quite a while since I’ve overcome the last obstacle on my path of life. That being said, next week before I interview for a job, I’m supposed to talk to a doctor again and what the focus is on, is something that is affecting me and my day-to-day feelings.
Something’s got to be done in the near future and at the same time – the consequences if something goes wrong are immense.
About a year ago I was in real bad shape…
I can’t convey how bad it was – I thought i was going to spend the rest of my life in a wheelchair. I thought I wasn’t goign to be able to physically perform with someone, I thought i wasn’t going to be able to go out and aout and more and would be at the mercey of someone who cared for me – or didn’t really but felt a responsibility.
At one point… exactly a year ago within the last few days — I got that wheelchair I worried aobut and my mom got upset… Telling me that if I get in one, I’m never getting out. Why would she say that? Basically it’s something that you see with elderly people who give up or who have their lives fall apart. Why try any more? It’s not like they will recover that well.
Meanwhile things continued to go down, get worse for me… It came to the point where physically trying was redundant because my body would fail onn me, int eh attempt.
Now it’s been a week since I got back from LA and it hits home every day when I think about how much things have changed in the past year. I didn’t give up, I didn’t stop fighting… I didn’t stop sticking my neck out either (but that’s a different story). The difference si night and day. Where I was doing physical rehab to try to keep some strength, now I am trying to use that strength I’ve regained to live my life agian.
Now if only I wasn’t stuck in the suburbs… but again, that’s a different story.
Summer Colds Suck
Sore throat, head that feels like bricks, itchy eyes and a nose that leads me to sneeze over and over again….
I admit it, I am a junkie. A total, dyed-in-wool junkie…
I want my walker fix, I need my assistive walker fix! If I don’t have my fix, I go crazy! I have a difficult time doing routine things like, well, walking! I need to lean! I want to lean! I want your support walker! UGH!
Seriously though, folks, being a gimp as my medical posts have so often referenced, I’ve been using a walker since last August and I’m starting to get peeved I am still dependent on it. Oh no, it’s not because I physically can’t walk without it any more… It’s that… Well, I can’t LET myself walk without it. It becomes so difficult!
I looked around the Internet and I couldn’t find anything on the psychological dependence patients build towards assistive devices in case they are using them for a long time. I’ve been confident that exists for a very long time after seeing plenty of elderly people, after surgery, insist on continuing to use assistive devices that they no longer need. It’s easier that way. I have to agree with them but at the same time — I’m a 24 year old and walking around as a gimp without something to lean on kills my social life.
Friend: “So, you wanna hang out?”
Me: “Sure, just make sure you drop me off curb side because the pavement is cracked in front of the building. Also help me get to my seat — screw chivalry! — I look like a fool pushing this aluminum walking thing around.”
Fun stuff :rolleyes
SO I gotta try to kick the habit. Be that by upgrading to a cane and making it Swing or by just getting rid of the walker and forcing myself to walk without it. Easier said than don, either way.
Somethings wrong with my old man…
Not only does Dad have a bad back, but something else is up with his arms… He’s at the hospital right now.
I’m pissed and concerned all a the same time.
Pushing the Limits
Rehabbing is fun.
No I am not some muscle bound guy – anyone who knows me knows that isn’t the case… Yet I have been having a hell of a lot of fun working out and trying to get back into shape. I’m impressing everyone who sees me with how I am doing because of how BAD I was doing just a few months ago…
Of course, in case you didn’t see it (and there are plenty who didn’t) you don’t know just how bad I was doing and how incapacitated I was. I’m chaffing at the bit now because I am thisclose to getting out of this oppressive life and DOING something again. Work? Travel? Either or appeals to me.
Walk like a Man
Now John is stumbling around the house a bit — sans a walker.
For the first time in a very long time I am trying to make some headway around the house without a metal walker clutched in my hands… It’s difficult because I am still leaning against things and still walking with stiff legs for some reason or another but its a hell of a lot better than being certain that I would be trapped as a gimp for a long long time.
Further evidence that I am progressing — going shopping and not using a rinky dink electric cart to buzz around the store on Tuesday. That was fab.
Oh, the life of a walker-bound sports fan…
Last night me, Michelle, her brother Geoff and one of Geoff’s friends attend the Lightning vs. Devils game at Times Palace. The game itself was a bore for the most part but the company was real good.
What sucked was getting to and from the arena.
I haven’t walked through a cityscape with this walker and my first experience with that was last night – it’s tough folks. It’s even tougher getting into an arena without knowing the access points for cripples and gimps… No offense intended towards the disabled.
And leaving the building? Don’t get me started…
Haven’t said very much about me lately and where I stand on a lot of issues — well, not politics and such but me me me…
Selfish? Maybe — this is my web site however so…
Lets see — I did say I felt like a Nowhere Man yesterday and that is indeed the truth to things — maybe that’s feeling sorry for myself as I try to rehab but it feels like the truth. I got nothing going on, no idea where I am going to, etc…
Meanwhile, what’s going on with my writing? I’ll tell you exactly what is going on — nothing. Sadly at that. I can’t get the get-go to write, and I can’t finalize stories. I still have two assignments to do for the Long Ridge Writers Group and I can’t quite do them :sad
I am supposed to start outpatient therapy next week which is certainly a plus – it’ll get me out of the house 3 times a week and help me attain my goal of getting my ass back into shape… The only problem is, when I get back to being a mobile being, I still have both physical and mental obstacles to overcome… And social, can’t forget social…
Setting a goal
I’ve got 28 days before my next appointment (well, practically 27 now but that’s besides the point).
I’m trying to set a goal for myself for that one. I want to walk, unassisted, into the doctor’s office. That’s a tall order for me as I am sitting here right now — but it is something I can accomplish. I’m sure of it.
Time will tell.
Balance of Power
So it’s been almost six months since I started to heavily use a walker to get around the house and through day to day life because my balance had been fudged up. I still heavily use a walker but there is a light – distant at best, but a light ever still – at the end of the long, dark tunnel.
I’ve been starting to stand from a sitting position without having to clutch onto things… I’ve been able to keep standing up, after I’ve been up and around with the walker, without having to keep grasping onto the walker. I’ve been able to do stuff at counters without leaning up against those counters in order to keep my balance…
Yes, there’s a light… the question is how long it will be before I get a full blast of sun on my face instead of just this distant, wayward light?
MIA at the Stonegauge
Saturday was an interesting and annoying experience for me. Two days after the festivities of Christmas and instead of continuing the Christmas cheer, I was doubled over, moaning and whailing… First at home, then at Tampa General Hospital’s Emergency Room.
THat’s right, Johnny got a part on ER :tongue
Seriously, I spent most of Saturday at TGH waiting to go into the ER and then even more time wwaiting to have the doctor tell me exactly what I already knew — that I had some gut problems and that it was causing some pain.
…Not that the fucker perscribed me anything for it. :mad
I’ve been struggling personallly with this physical stuff the last few days – thus no entries. I don’t think any ofmy readers would mind that…
Six years of Silence
You know, I was going to brush off this anniversary as another one that was a major milestone but also something I could forget because my day-to-day is busy enough without having to nit-pick at the past.
But it’s an interesting anniversary none the less — one that goes from silent to booming in 4 years and applies only when I’m lazy now.
I went deaf 6 years ago to the day.
I had an acoustical neuroma (egad, did I spell that right or wrong for the umpteenth time?) removed out in Los Angeles at St. Vincent’s Medical Center by doctor Derald Brackman and company… I woke up – not sure when, can’t recall what I was told in the past – with the only sounds in my head a constant tenninus and my own voice when I spoke. Of course, I hadn’t been able to hear much before that, as I had been constantly losing hearing in both ears since 12 or 13, but six years ago — my world went totally silent.
I can’t remember all the details – I checked in the night before to the hospital. I didn’t shave my head, like I should have done, and that resulted in a gnarly haircut… I do recall me quipping about the Big One hitting during the operation (“what happens then?” I asked those who were prepping me) and I can recall the immediate aftermath of surgery – being chained to a bed and being asked to touch my nose with my restrained hands.
Of course there is more to it – my life now with sound and the Auditory Brainstem Implant has beaten deafness. There are anecdotes from when I went deaf and the immediate aftermath to regaining my hearing in 2001 with the ABI… And of course me aborting setting up the ABI in March 1998 and delaying having sound back to begin with… but alas, that is for another time because my computer is in need of help.
After a week
So it’s been seven days since I was discharged from the Hospital. It’s funny I posted about “falling off the internet” last night because I haven’t heard from a lot of people I contacted about being under the weather / in the hospital again. Hmmphf, figures right? Find out who your true friends are…
Blash, tha twas mean spirited but at the same time, it does hold some water.
At any rate, how am I progressing? Am I doing better? Yes. In some lights. I am showing a lot of strength and a lot of other functions that were failing before the operation. On another side of things, my balance seems a little more screwed up. i don’t have the confidence to do certain easy-activities because I feel like I will fall or something like that. Gotta work on it.
Long road in front of me — a long road indeed but I am happy to be journeying down it once again instead of sitting around, feeling like I am in a car always stuck in Neutral.
Back in Black – the Dodger Boy returns to the Scene of the Crime
Thank you, thank you… Please hold the applause… Please… I’m not worthy, I’m not worthy I’m….
Oh, the hell with it… Who’s clapping anyway? Little Miss Avoidance? Miss I-hooked-up-and-don’t-have-the-nerve-to-say-anything-to-
you-because-my-ties-to-you-are-nil-while-I-am-with-another? Oh yeah, maybe some of my friends who knew how fucked my situation was going into November 26th and know just what the outcome has been might be the ones clapping.
I beat the fucking odds.
I exorcised the fucking demon.
I had my miracle and God slapped me on the back and told me with a good natured grin, “You fell for it, you shit. Now get back in the game.”
I’m home.I can walk, I can talk, and I can type into this fucking blog my rants and raves and all my bullshit once again. I’m ANGRY, I’m HUNGRY, I’m in need of a some venting here and there but this is a GOOD angry, this is a DAMNED good angry. This is an angry I don’t know who the hell would be able to identify with and I don’t know who would even try.
You see, over the summer things got grim. There was this blackness hanging over my life. Everyone around me knew about it, I dreaded it, I loathed it, I was desperate for escape from it. That blackness was all the grim possibilities of my future if things didn’t get corrected.
I went under the knife in August, still in grim shape – still loathing, still scared, still sad, and what happened was I didn’t get shit fixed. Instead of going out and getting my problems washed away – I had more doubts exposed, more bad thoughts brought to the forefront, the dread conquered me and it grew every day from early September till those last weeks of November.
My friends supported me. Those who strung me along wanted to be done with me for there own personal good, others just met me and left me because I had this doubt and this negativity around me. Indeed there was too much negativity around me. There may STILL be negativity around me in the next few weeks as I face adversity and have to come back physically (and emotionall) from what I just went through.
For the record? Fuck negativity.
For the record? Fuck adversity.
Life’s a game and I am back on the playing board. I thought I was just going to be a piece on the side that didn’t get used because life has a way of taking you out of the game. Fuck that. Fuck the idea that I should worry, or I should hurt, or I should doubt I will find something I ma deserving of — be it in love, life, business or whatever. Fuck it all — I WANT IT ALL. I’m going to get it all, and God is going to be on my side as long as I don’t hurt, maim or kill to accomplish that.
I want the challenge. The blackness is gone. The looming sense of dread is gone. I want the challenge of life again. My first is getting my ass back in shape, the next is … well, the next piece I haven’t thought of yet because there are many pieces. It’s also dependent on the first piece of it all.
I posted a “Missing” picture” a few months ago on this very blog… Posting some of my former pictures and asking “Have you seen this boy?” in a mock tribute to Robert Patrick in Terminator 2…. I’ll tell you right now – the cocky and optimistic son of a bitch who founded this site, who got the Beatles balls in an uproar, who’s pissed off the locals with his liberal talk, who’s upset the government with his public votes of incompetence, who’s gone through more pain and hardship than most will experience in their lives — that fucker is me and that fucker is back in charge of the life of John Fontana.
Maybe it’s the drugs talking? Maybe I wake up tomorrow from my bed and try to figure out what is my purpose in life again?
Yeah? Well, what if I wake up tomorrow and I just say “Lets go” and do what I need to do – it’d be the same thing but with a better attitude. I need to accomplish things on my own — Lets go, I gotta get it done. I don’t need to procrastinate, I don’t need to avoid, I don’t need to pussy foot and hide from the problem.
I’m back, ladies and gentlemen….. Time will tell the tale just WTF is in store but I am back. Let it roll, let the sun shine in and all that jazz…
I feel odd tonight. Very much alone even though I’ve heard from friends – some of them – and had gotten in touch with Andy (my younger brother) who I don’t get to talk to as much since he moved out of the house…
Something’s missing… Maybe it’s just because I’ve been through this shit twice before in the last year and there was something that came up each time and it didn’t come up at the same time…
I don’t know what to say and I don’t know to stay silent. There is no joy in silence – that much I have learned. There is joy in laughter but there is no joy when the laughter is held back because the ache is too apparent. There are no smiles when the grim is hanging over you and there are only so many things you can do before you go slowly insane with worry and fear.
So, John Fontana, Neurofibrometosis Type 2 sufferer, will be going of the air again for the second time in only a few months. The Stonegauge falling silent may or may not happen – tht depends on certain people who I have entrusted this page to.
Why do I want the page to go on — even if it’s mundane stuff being reported about people’s private lives? Because the point of the Stonegauge, since I was originally broken hearted in March of this year, was to stay drunk on writing in a way to escape the day to day… Finding words sometimes were the only way to get through… I would like tha carried on even if I am not here. I know that isn’t the easiest thing to do, nor is it something desired by those who have done it in the past, but it’s there to do and I am hoping it goes on….
The operation is scheduled for 7:30 AM… It’s supposed to last six hours…. I might be under anesthesia, but these will likely be the longest 6 hours of my life — defining just who I am going to be and what life I will lead for the remainder of my mortal existence…
There is stuff I want to say in closing but alas, they are really empty statements and not true words…. There is a lot of emptiness around… Emptiness that is caused by things out of my hands — beyond my control. Shit happens and all of that…. Who’s to say that’s not true? Decisions that you make – so yourself alone.
Take care, all. A happy and joyous Thanksgiving to those who find this site – and best wishes for the Holidays.
Appointment from hell
So I needed a fresh MRI… that’s ok, that’s fine… 20 minutes, maybe a half hour in all… in and out, that’s what I figured when I heard about it yesterday.
Need to be prepared for tomorrow… Need my doctor fully prepared too… Give him everything he needs, no questions…
So I show up at a MRI clinic in south Tampa today which I had never been to. I showed up sometime before 10 AM with the intention of just going in and getting my shit done and going out. I figured there might be some delays because I was a last minute entry into the schedule – but I can deal with that, right? No biggie…
The biggie was everything after that. Waiting around, I get put off, put around, sidetracked, sideways. i have to strip down for the MRI and then have to sit around, freezing my ass off in 70 degrees, waiting to find out that the MRI unit is too powerful for me and it would be easier to get a copy of my OLD MRI Films from my normal clinic.
Just ook them 2 hours of bitching, paging, running around and other shit in order to figure this out. I’m pissed off at the clinic, I’m pissed off at the Cochlear corp (who happen to make my dandy ABI hearing device), I’m just pissed off in general – this is no way you want to be lead into surgery… “Eh, we won’t have things set for you, son. Sucks to be you. Hope your doctor is a miracle worker because he won’t have fresh shizit to help him through surgery.”
SO i have hours left of this life, if this is a life. I was talking to a friend last night and came to the realization I have been at this crossroads before – that was when I lost my hearing though. It was a lot different and a lot the same — going back to square one, entirely. Having to learn how to deal with life all over again from a new perspective…
….That is, if things don’t work out. And honestly – I don’t know how they will work out. Right now I think I need a miracle….
For those of you who have never had to spend a day in the hospital, being forced to wait a gods age to talk to a doctor for a few minutes before being shuttled along to another doctor… I hope you never have to go through the Pre-Operation experience which I have so adequately have down.
I spent the majority of my day at Tampa General Hospital, hob knobbing in Harborside Plaza before being shuttled through the Pre-Op area of the main hospital… Where I got to re-read the bad news that I may be a paraplegic after my scheduled operation Wednesday.
Yes, that’s right folks. A guy who used to be able to walk being forced to use a wheelchair for the remainder of his days perchance… You don’t meet many of these people often… Normally when you find out someone has been forced into a wheelchair, you assume there was an accident.
At any rate, I’ve been down a good part of the day after reading some stuff my Doctor wrote about the gravity of the operation… It made em miss, it made me want, it made me hurt, it made me want to cry (and I know I did at times – just sobbing to myself when no one was looking). I could have used a shoulder to lean on…. but it would seem that between people’s choices and the course of fate, some doors you have to walk through all alone.
…which is, sadly, a very common experience for myself… Or at least that is how I feel about it.
I’ve got my friends, I’ve got my family but at the same time – I am missing something… *sigh*
Johnny and the 'roids
OK, so there is no chance I am competing in the Olympics next year.
Dr. Smith put me on Steroids earlier this week for preparation of the big day, Wednesday. He wanted me at my strongest for the operation and post-op and I can tell you right now I am better off than I have been with muscle strength than I have been in weeks. I’m up walking around a lot more and doing a lot more than I had been as my legs have been fading the past few weeks.
Of course, this means I am going to have more of a time building up muscle strength again after I am done with my prescription, because you always have a tougher time with muscles after steroid use… but for the mean time, I think I’ll live with it. Who knows, this could be a grim last visit to the land of legging-it-out. :sad
Oh Deer has a couple of meanings to it as the title to this entry…
At first, I’ll give you the literal interpertation – A deer rand through my neighborhood. NOw, for those of you out in the country or who have lived in the country or areas where woods are plentiful – deer sightings are more common. Personally, I haven’t seen a deer since I lived up on Long Island. I see deer signs near Booker Creek preserve here in North Pinellas, but never have I seen anything around Lake St. George that would suggest there would be this kind of wildlife around.
Gopher Tortises, sure… Aligators? Totally — Eric had one in his backyard once, as had many others in the neighborhood. Snakes? Plenty. But deer? Never. I’ve lived here 14 years and never has the possibility of a deer in the area seemed like a possibility.
Too much developement, too many people, not enough space to roam.
But my mom saw one run down our street. How the hell it got to Lake St. George, I don’t know. If it’ll survive until it’s trapped and moved to a safer location – I don’t know at all.
The other part of “Oh Deer” is the “Oh Dear” part. It’s been six weeks since I saw Doc Smith and I was at his office today. We spoke candidly towards each other — I told him I was fading and he told me that i would likely have a long recupperation in front of me after surgery — including a stay at a rehabilitation center.
It’s troubling. Un-nervving – pun not intended but recognized.
So next Wednesday, I am supposed to go under the knife – the day before Thanksgiving. I’m really sorta taken aback but at the same time, I recognize the fact I got to get this shit done — now. While u are eating your turkey or with your family, I’m going to be lying in a hospital bed.
…With no guarantee that I will take to my feet under my own power again.
Well, it looks like it will be WEDNESDAY for me when I finally deal with this leg thing once and for all.
That’s right, kiddies, I’m going under the knife again in 6 days (almost five now). I knew it was coming up, that is why i was whining and bellyaching a little more the past week. That’s why I was missing a little more over the last week.
6 Days – that was quite a shock when I heard that was one of the possible dates…
Yes, it was only one of the possible dates but I’m sitting here knowing I am fading with my leg strength, as I have been since I got out of the hospital in September… I’m having more problems and damnit – if I don’t try to fight this stuff, it’s going to get worse and worse until I’ll be forced into a worse spot than I am in now.
And folks, I’m in a bad spot now. My friends have known it, my family knows it. I’ve known it since I came to in the hospital in August after the last operation….
So what’s going to be the deal witht he Stonegauge over the time? Well, instead of putting a muffler on the site, the guest writers will come out of the woodwork again. Certain people still have their accounts but I’ve also talked to a couple of my good friends who will be trying to keep things running while I am out of action.
My buddy Keith from Calgary, Alberta; my FSU-attending, U of F loving bud-ette, Terra; my Nebraska Corn-husker friend, Melanie…
Fear the Posse, people, fear the Posse :evil
SO I got until Tuesday. WHo knows what the deal will be the next few days. I got to get my shit in order online and off… And figure out how I am going to live life Post-op…..