MC Spoo
30Mar/090

End of the Road – Yep…

So this is the end of a medical road embarked on in October... 2 separate doctors, 2 CAT scans, 1 month total spent wondering if I have brain tumors, and 6 months wondering if I can ever really wear my left hearing aid again...

The answer is... No.

There's just too much damage to my left auditory nerve for any currently accepted methods of medical conveyance to allow me to hear without the accompanying massive tinnitus onslaught. I can hear out of my left ear, it's just the damage is so severe that it kind of rattles the shocks in my brain till I tip over and throw up.

The plus side: I'll never have to buy a PAIR of hearing aids again (much cheaper). I also know, for the first time in my life WHY I AM DEAF.

It's called Nerve Deafness. It's the first time since I was fit with hearing aids in first grade that someone, ANYONE has said "you have nerve deafness". I KNOW NOW. I suspected before, but now I've got a doctor who's pretty much "99% sure" it's nerve deafness. I am no longer a medical enigma. I am now one of tens of thousands of people in the US who suffer from Nerve Deafness.  Sure, it sucks, but at least NOW I KNOW.

I suppose I'll now sit around with the rest of the folks like me and hope and pray someone tests the stem cells to see if they can repair auditory nerve damage... and I can hope and pray that this happens in my life time, when it matters...

and I can hope and pray that my right ear doesn't go too, because if it does... then I'm no longer hard of hearing: I'm completely DEAF... where does one go to learn sign language at 37 years old?

Filed under: Deaf No Comments
24Mar/090

Mixed Blessings, pt 2

So I had the shot done. It hurt a bit, but not really so bad... <cross fingers, hope I don't wake up tomorrow in complete pain>

In any case, I have to have a hearing test next week. If there's no change, then we assume the shot does nothing... and that's it. 

Last night I had a weird dream, where a dream-made location struck me as deja vu in a lucid dreaming state. In the dream, I realized that this place was familiar... yet I'd never been there before, so it's a place that was made in my dreams some indeterminate time before. Ever had that happen?

We drove down a highway, and I thought to myself "this looks like San Fransisco". I haven't been there since 1999... but it looks that way. Then I realized it was just a set. Behind it was a desert, and we drove off road between a split in the highway. In the center of this split was a large lake in the middle of a desert. A long legged dog walked in front of me, then went to the water... and nodded at me to get over there with him. So I began walking to the dog and...

My damn alarm clock went off and shook me wide the heck awake.  All day I've been thinking: What was the dog going to show me in the lake in the desert?

Filed under: Creativity, Deaf No Comments
10Mar/090

Mixed Blessings

So today was a day of mixed blessings. Let me summarize:

2 Weeks ago, my ENT informed me that their research as to why I was suffering massive tinnitus had reached a point where they had 2 basic diagnosises: Either the auditory nerve/neural pathway from my ear to my brain was fried OR I had tumors. I was scheduled for a CAT scan a week after that.

I had the CAT scan last week on my brain (fast, painless procedure, really) and then had to wait another week. The last week has sucked SO bad... I've buried myself in work and haven't had a day completely away from work in over 2 weeks. I've tried to keep my mind as occupied as possible so I wouldn't have to think about the chance that I had tumors in my brain.

My mind just doesn't allow me to ignore slight chances. They're still chances. Sure, it might be mathematically infinite, but it's still a chance. I wouldn't play that chance on a roulette table, but this is my life here, not some funky ball bouncing around a spinning top.

So while I'm sitting there running a delightful DDR event last Saturday, I'm thinking "what if I have tumors, and start to lose coordination and can't do this anymore? What if I lose my mental edge and can't keep up with this anymore? What if I can't help make Battle of the Books even better this year?"... What if I can't watch while my brother and his wife raise my nephew to be a fine young man?

I guess I'm my own worst enemy sometimes. The end result is: there's nothing between my ears... except a nice, large brain. So no tumors. Yay me.

That's the mixed blessing. As stupid as it seems, if they found tumors, it would be the first time in my life a Doctor gave me a solid diagnosis on WHY I AM DEAF. I'm 37 years old, and no one has ever said "This is why you're deaf". I've spent 37 years in this little niche of mine, a medical marvel with unexplained loss of hearing... and now I'm even more so. Not because I'm older, but because I'm now functionally deaf in my left ear. I cannot wear my left hearing aid. I no longer have "stereo sound" in the slightest. I'm an AM radio with tinny speakers.

I'm in danger of losing the hearing in my right ear if I get exposed to loud sounds.  I probably can't attend a rock concert ever again, which means I may never get to watch my brother play in a band... of even to see my friend Chris's band play, which I really want to do. I have to rethink have a cymbal at Battle of the Books to signify the round ending... because I might ruin my hearing. Because at any moment, I may be exposed to a sound that could render me completely deaf, which is a world that I've never existed inside of for 37 years.

For 37 years I've existed in my own little world, where I'm trapped between a deaf society, and a hearing society. Where I'm trained to exist in that hearing society, perusing the art of lip reading and processing the wee bit of sound I was lucky enough to receive. Do I have a head start on the deaf people? Or will I be lost in their/my world... because I don't speak the language? because no one ever tried to teach me the language? Am I too old to learn the language?

Do you ever realize how lucky you are to have senses? To perceive the world? To realize there's beauty in sound... and visual... in flavor... in touch... even in smell?

There's also essentially no chance Cochlear Implants would help me because the nerve is shot. If the nerve is shot, then the Cochlear Implant does nothing for me. Installing the Cochlear implant would probably INCREASE the tinnitus issue.I'm also beyond masking devices because they don't make masking devices for people as deaf as me...

It was suggested to me back in, I think it was 1992, that I get Cochlear Implants by a team of Doctors who announced in forbidding voices "How long have you been... <dramatic pause> this deaf?" Duh... since I was 6? I wonder... if I had accepted that diagnosis, and allowed the implants, would I be better off today? Did I make a mistake? if only...

Isn't it so completely, utterly, almost hilarious in a really messed up way that a man who's essentially deaf has completely lost the ability to understand SILENCE as anything but a vague concept? Lil' back story to that... Check out my script, Deaf Boy... it includes a scene where I point out the first time I experienced tinnitus... it's equally ironic that shortly after I finished that script, this issue became MUCH worse than described in the screen play...

I don't even think I'm sad... or even happy at this moment. I'm just trying to relate, if only for my own historical purposes, how utterly confusing all of this feels coming out of that Dr office... that I entered stiff with some weird kind of stoic fear... expecting the worst... and coming out with nothing more than more of the same:

I'm sorry Mr. McEvoy, there's nothing we can do for you... a roaring, unending refrain when it comes to the subject of my deafness...

Oh yeah, as I was leaving, the Doctor's grabbed me to say "come back next week". They want to stick a giant needle in my left ear and inject me with the stuff that got Alex Rodriguez, Mark McGwire and Barry Bonds  in trouble.

Shit... I'll never be a pro now.

Filed under: Deaf No Comments