Category Archives: Medical

Contribute to my Neurofibromatosis Network charity drive (via Facebook) and aid research into the genetic disease

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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 “Here Comes the Sun” as my intended first-song to listen to when sound was restored for me. It just seems so God damned fitting. The span of time between August 5th to October 24th seems comparable to an entire calendar season. One long, cold, lonely calendar season where this author was condemned to solitude by way of being shut out from the day-to-day goings on around him with thanks to 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.

 

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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.

 

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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.

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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. Continue reading

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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.

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The joys (sarcasm) of charitable fundraising for a rare disease (NF2)

Wednesday, February 10th marked my 12th anniversary as a hockey blogger.  That’s a pretty huge milestone as bloggers don’t usually last more than 3 years… let alone 12! Oh, Stonegauge is probably older than that – though I did not have many entries the past few years. To mark the occasion I brought up the genetic/neurological disorder I’ve been dealing with since I started, and started a charity drive called Deke the Deuce. The money is going to a Tampa Bay area based Neurofibromatosis Type II charity organization.

Big time blogger raising awareness and pulling in dollars to aid the fight against NF2! Cute name for the drive too!

Yeah, well, what I’ve learned in the past week-plus of the drive is that charity fundraising is tough even if you have a huge reach through social and general media.  You may have a wide number of readers or thsoe exposed to the drive by way of retweets and Facebook shares but if someone doesn’t connect to the cause, why would they hand over a nickel, let alone the amount of cash that would actually show up on the charity page?

I don’t know the best way to “update” the page. Anything I say is too personal and too thin an audience sees it. Yet I have to connect and personal is the only way to do it.  But telling people how you went deaf? What life can be like in deafness or even just hard of hearing?

The fact I’m also mostly pushing this at hockey fans hurts things too just because I’m not sure how to give it a broader appeal.

I plan on running thins through March 16… I don’t know if I’ll even reach $500, but the money raised is better than nothing. And I HAVE enlightened some people and introduced them to the disorder in general.

 

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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 and lost my hearing at 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. Continue reading

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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.

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Jacked In

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?”
“Hell Yes!”

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.

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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.

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Smashed

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.

Anarchy ensues.

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

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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?

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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**

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the fallout

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.

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