It's been two full weeks now since this strange vertigo/deafness episode started, and in some ways it feels like it's only been a day or two, but in other ways, it's like I never had any balance or hearing to begin with.
I don't do "sick" very well. Sure, I follow orders, drink lots of fluids, take the medications as prescribed, rest a lot, eat reasonably well and all that stuff, but inside, there is always that part of me that says "Cut it out. Go to work. There ain't nothing wrong with you." And sometimes it's really hard not to listen to that part and not to just push my way through it and fake like everything's fine. Until I move....
When I move, I realize that I can't work because I can't even walk. My sense of balance is so out of whack that to cross the room often requires leaning on every wall or piece of furniture around and hoping that I don't wind up face down on the floor. And to top it off, the whole exercise leaves me disoriented and trying to figure out why I crossed the room in the first place.
Then there's the medication. Frightfully, I'm pretty stable right now. I'm down to 40mg of prednisone daily (from the 60 I started with), and I'm somewhat accustomed to bring moody, with feelings bordering on rage making a sudden segue into melancholy or bliss. Ok.... not so much bliss, really. I'm not able to sleep, except for when it's all I can do, and I've formed real opinions on stuff that is utterly meaningless. (For example, pubic hair is there for a reason and shaving it off is self mutilation, or that all American politics is a lie) but the biggest thing I guess is this whole morality thing.
Realizing that the healthiest years of my live are most likely in my past, and I spent the vast majority of those years punishing my body, conducting a little science experiment to determine which organ would fail first. The liver and lungs were at the top of the competition with the heart always in a close third.
But now it's different. I'm in my mid-forties, my body is in decline, and I'm left to wonder what this all means in the big picture, and of course, in the back of all that comes the dreaded missed opportunities and wasted potential that are never far away when I decide to start really feeling sorry for myself.
But one thing has changed. I've made a major decision about my past. Once this episode is over, my karmic balance is reset to zero. Old wrongs I've done are no longer of any consequence and I shall no longer carry the guilt for my part in those situations. Surely, I shall carry the lessons, but the emotional baggage must go. On the same token, any resentments I may harbor against others for their actions must now be rendered void. This will take some work on my part, but it's time to forgive myself and others and get a fresh start so as to be truly free from the dead weight of my own personal history books.
Well, it's after 3am and I'm still wide awake, blogging away on my phone just because, well... just because. In about 30 hours the next phase of this journey will begin, as they double dip me into the MRI machine (one standard, one with contrast) to find out what, if anything, is in my head. From there, the choices may be few and simple or many and complex. Who knows? All I know is that I've got a day, and I can do anything I want with that day........
What I'd like is a massage, a bath in a tub that fits my body, and a nap, but I doubt that's gonna happen just yet... :/
On the front of the feeling of not feeling so well, there's really nothing new to report. I still can't hear out of my right ear, still can't sit up for more than a few minutes at a time, and certainly can't be trusted to walk much further than across the room.
Yesterday (that woulda been Monday, the third day of November, 2014 AD), I had all intentions of going to work for half a day or so. Alas, that didn't quite work out. I got up and got dressed but couldn't make it to the front door before I was weaving and wobbling all over the place. So, my dreams of going to work were pretty much shot. Now, that brings up the point that I'm now out of sick time at work and will be soon out of vacation and personal days as well, which will mean that money will be hard to come by, and that scares the holy bloody living hell out of me, but I can't afford to let that bother me right now, because quite honestly, I've got to worry more about getting myself better above all else. So I'm just going to take all the steps necessary to get my body better and work with my employer to use the company sick bank and then go to the state, if necessary, to make sure that I can get some form of short-term disability. It's just that all this stuff is frightening, and I don't like to be frightened by life. I only want to be frightened on my own terms, but then again, who doesn't?
The day progressed, and I continued to feel pretty sorry for myself. I had a hard time getting up and moving around, the medications were particularly hard on me, and I was struggling to make it through the day. My mind was racing, my body was abuzz from the medication, and I was just really sad. It all culminated when the wife and I went out for a few minutes and she turned on the CD player in the car. In the deck was a Jerry Garcia Band bootleg from 1980 or so that opened with "I Second that Emotion", and as the band launched into the song, the crowd went wild, Garcia's opening guitar licks wrapped around the audience and began their ascent into musical bliss. As the music swelled, it hit me like a gut punch that I could not hear a single note in my right ear. Nothing. Not a beat, not a bassline, not a guitar note, not a cheer from the crowd, nothing.
I finally cried. I finally let myself wail openly for the loss of my hearing. I let myself bawl like an infant for a good 30 seconds or so. This hurts. Not in a physical pain way, but in a deep way that I can only barely begin to describe. I'm a musician. I'm an ethnomusicologist. I'm passionate about music in ways that most folks don't understand. Now, I'm sitting here spinning, in fear that I may never hear music the same way ever again. That scares the hell out of me. I know that there are other folks who have gone through this, and it's their experience, their strength, and their hope that is getting me through this right now.
But the facts is this.... I'm at a crossroads. I'm in my mid-forties. I'm in the midst of a serious health crisis that I don't even understand yet. I can either give up and surrender to the self-pity and allow myself to be sucked deeper into the vortex of misery or I can keep fighting.
I've gone through a ton of stuff in my life and I've somehow managed to come out of it all so far. This ain't gonna be no different. The uncertainty is terrifying, but what the hell. It's a new adventure and may lead to new opportunities to discover previously unknown degrees of happiness and fulfillment in life.
So I will allow myself the occasional lapses into self-pity, but I will not let it control me and I will not allow it to define me.
So really, all I want right now is a solid full body massage, scalp down, followed by a streaming hot bath in a tub that would actually hold my body comfortably, followed by a brief nap, from which I would awaken to enjoy a light snack of fruit and cheese, and a bottle of Pellegrino mineral water. But I'd settle for the massage.
Basically what I'm saying is that I need pampering. I need my body thoroughly relaxed, my mind set at ease, and my spirit in a place and space where deep healing can occur. After all of that, the same ritual would be repeated again on occasion, just to recharge my batteries.
That's where I'm really at right now. Not really feeling sorry for myself, although I'm a bit saddened by the situation in which I find myself. Now, I'm looking at what I can do to make things better for me daily.
Today's vertigo was less intense and frequent which seems to indicate that the prednisone is working, our that I'm just getting used to the prednisone.
But that's just stuff that I'm thinking. I'll gladly accept massages, baths, etc, but what I've really got to come to accept the elephant in the room..... "What if I never gain back my hearing?" Then the tailspin resumes.
Serious illness is a total head trip. Accepting that something is wrong, having to wait for tests and results, accepting the ramifications of the conclusions.
But it's late, and I think I can sleep, so I should. Serious illness will have to wait till tomorrow.
Peace and love.
-r
There are two schools of thought on which days are more difficult. According to human being Robert Hunter, "The first days are the hardest days", while Thomas Earl Petty contends that "The waiting is the hardest part" I'm kinda at a split on which one I believe right now. The first days were rough, don't get me wrong, but the whole waiting thing, well, that ain't no picnic either. So here's where we stand....
In our last episode, I left my primary care doctor's office with 2 prescriptions. One for Prednisone, and one for some antibiotic. In the days that followed, I missed more 3 days of work, watched some of the absolute worst horror films ever made (nothing quite like Troll 2, but some stuff that got pretty close. Check out Zombie Ass: The Toilet of the Dead sometime if you don't believe me. Also during this period, I tried my best to continue with life as usual. Rested, drank plenty of liquids, blah blah blah, and on Saturday night (September 25 for those of you keeping track at home), we performed a gig. During said gig, I was stumbling around like a drunkard, using a cane to help me stabilize my every-so-large body and it sort of twisted and went in whatever direction it best saw fit. A truly graceful sight to say the least. As we set up to play, I realized that the only was I would be able to hear my guitar would be to crank the house volume up to about 11 and scare everyone out of the joint. So, instead, I opted to go with my gut and play, even though my guitar was inaudible to me. We did a pretty solid show (although the trainwreck that was 'Theme to an Imaginary Western' should be erased from our collective memories as promptly as possible), and to my surprise, the recordings sounded very nice. There were only a couple of moments in the second set where it sounded like I was trying to sing one song and play another. So score one for having faith that other people are telling you the truth about what they're hearing.
After the show, I waddled out to the car with the equipment and went home to spend the rest of Saturday night and all of Sunday trying to get myself ready to go back to work on Monday (September 27). So I made it to work on Monday. I drove myself there. Quite possibly the stupidest and most dangerous decision I've made since I decided to stop using drugs and alcohol. In all honesty, I had absolutely no business behind the wheel of a car. My vertigo had gotten significantly worse, my hearing remained gone, and had I collided with another vehicle or another human during my little "I'm a man. I can do this." pride bullshit trip, my story would have taken a far darker turn. Fortunately for all of us, the Universe did not have a car crash in the cards for me that day, and I made it to work safely. I was able to get some stuff done, and it was pretty cool to be productive again. But after lunch, I fell apart. My vertigo got so bad that I could hardly stand at all. My boss drove my home in my car and had one of our co-workers follow him so he could get back to the office. Not exactly my proudest moment.
The following day, it was time to take my last Prednisone and I called my family doctor and said "Okay doc, nothing has changed, and in fact, things have gotten worse. What should I do?" He referred me to a specialist, but I heard some bad things about that doctor and decided to go with the husband of one of my wife's clients.
He was able to see me the following day (Wednesday), and he performed the examination. He also performed the full hearing test (which I'll get to in a minute). During the exam, he explained that it appeared that I suffered a major insult to the region inside of my right ear. While the ear bones were all perfectly intact and there was no damage to the eardrum, There was something just beyond there that was placing pressure on the nerve that controls hearing and the nerve that controls balance. I"m not a doctor and I'm way too lazy to look up the names for all of this. He also informed me that the issue could be either viral or auto-immune in nature. More would be revealed upon further testing. I'm still waiting for the MRI to be approved by the insurance company (y'all know how much fun THAT can be). But back to the hearing test. I'm pleased to report that in my left ear, I have outstanding hearing. It's actually better than what it is in most folks my age. So I was all happy. The hearing in my right ear, however, is completely gone. Nothing. Not a bump or a squiggle to indicate that any noise other than that produced by Beep's cousin is being heard.
So now I'm in waiting mode. I can't really go back to work full time because I'm not able to drive, and I don't know how long I'd be able to work. I'm thinking about trying again on Monday just to see how I handle it. Because the facts are that I ain't gonna be getting paid for not going to work much longer. I've used up all my sick days and am cutting into what little vacation and personal/floating holiday time I've got left. My bank account is not amused with the possible ramifications.
But while I wait, I have the joy of being on a high dose of Prednisone. I"m taking 60mg per day for the next 3 days, then tapering down over the following two weeks. So, I'm up all night writing nonsense on the internet, feeling self-conscious, afraid that my friends and co-workers will all tell me to get lost, and all the wonderful things that our minds and bodies do when we're in such a state. And of course, the joy of learning how to turn your head to face the speaker when someone speaks because really... I'm deaf right now, and I gotta learn to live with it for the time being..
It looks like the possible causes for this are an Acoustic Neuroma, an autoimmune issue, or a virus of some sort. The good news is that none of these are potentially life-threatening and all of them can be treated. The bad news is that some long-term hearing loss may result, and the vertigo may take a good while to subside....
I was considering re-titling this blog again, but to what end? It's not as if suddenly people will be rushing off to read the rantings of one man sitting behind a keyboard taking pounds of ideas, notions, feelings, and a few facts and blending them into a single literary goulash. For what? What would we call it this time? Occasional Examinations of a Life Somewhat Lived?The Public Secret Diary of a Bore? Or should I be hip, as I have been with the blog's current title, and draw my new name from popular culture, a song lyric perhaps. Perhaps New Eyes should be replaced with New Complaint. Both were taken from lyrics written by fellas with a couple of things in common with me... Caucasian, guitar players, song builders, dump takers, who have been known to make the occasional fool of themselves and often found their intentions misunderstood.. Other than that, there ain't a whole lot else that sets us together. One of 'ems dead and the other one is on his own planet that just happens to coexist with ours. Funny how that works. But whatever. This isn't about those guys. This is about me. Yeah! Remember me? The guy who started writing all of this stuff about his C-Diff scare last year? I'm that guy, the same guy who, miraculously, only suffers from Ulcerative Colitis, which is now reasonably well regulated.with some dietary adjustments and GI-specific anti-inflammatory medication.
No, today ain't about that. It's not about my guts at all. It's in my head this time. That same stupid old head that talked stupid old me into so many stupid decisions over the stupid old years is back, and this time, it's got a brand new problem. Forget the life-long struggles with mental illness (labels like depressive, bi-polar, manic-depressive, schizophrenic, chronic incurable blah blah blah were once bandied about and perhaps they fit the guy who wore them, but that's not even on the table for a potential topic of conversation anymore), no, this is new and different. Check it out!
Sitting at home some eleven days ago (that's October 21 for the lazy or the mathematically disinclined), working on homework for this math class I'm taking (it's never too late to get a college degree, you know... stay in school kids!), when I suddenly, and I mean SUDDENLY lose all hearing in my right ear. (Okay, so "all" shoulda probably gotten the all caps, italics, bold face treatment too, but whatever.) In the amount of time it take for a fly to figure out how to outmaneuver a flyswatter, I'm functionally deaf in one ear.
"Oh shit!" I think that's the first thing I said. Either that or "Hmmm. That's weird."I try the first thing I can think of... Let me thump around the ear and see if I can hear it. Nope. Not a sound. I overhear my wife and stepdaughter in the midst of a conversation in the next room. I can't hear what they're saying, but I can make out voices and I can tell the difference between the speakers by the tones and volume of their voices. So to further my experiment, I cover my right ear. I hear no different. Everything is as it was, so apparently my right ear isn't hearing much if anything. So I decided to isolate the right ear and find out exactly what it was hearing. So I covered my left ear, squished and contorted the earlobe all around an pushed it into the sound hole and all to make it as airtight as possible, and lo and behold, everything is gone. All sound has vanished from my world. I hear, for the first time in my entire life the sound of absolute complete total dead silence. I left it there for a minute, just to hear it, just to feel what it sounded like to not hear anything at all. Within a matter of seconds, though, my newfound perfect silence was interrupted by the sound of a tone which I can only describe as the cousin of a beep. It is similar to a beep, but it's not a beep. (For the record, I'm not talking about the beep of a car horn, I'm talking about the beep of hospital equipment. This sound somewhat resembles the second, and has no relation whatsoever to the first.) Therefore it's the cousin of a beep. I call this sound a beep's cousin because it certainly shares qualities with the beep, but it ain't the same at all. I unplugged my left ear and the conversation in the next room returned and beep's cousin remained. I don't have a lot of close friends, you know, the kind you talk to on a daily basis and go fishing with, or the kind you go watch a ball game with. I've got folks I know, and folks I care a lot for, but nobody to really call when something like that happens. What am I gonna say? "Hey man! You won't believe what happened! I can't hear shit outta my right ear!" Nah, just post a little something about it on Facebook maybe, then move along, assuming all will be back to normal the following day.
So I woke up the next morning hoping to find that something had changed. It had. Beep's cousin made himself most comfortable in my ear and brought along some his friends. There's the low hum, the cicada, and the random-ass weird sound that defies all explanation. But in addition to my newfound deafness and the arrival of Beep's cousin and company, Wednesday morning found me spinning around in all sorts of directions while the room and everything in it also span around in all sorts of directions. Walls melting, ground rising and falling in waves, all that good stuff that you'd expect from a poor attempt of using cinema to simulate the visuals of an LSD trip. Only this wasn't cinema. It was real life. My TV bowed to greet me as the walls behind it did a sort of clockwise semi-swirl dance that went into infinity but never actually completed one full rotation. As I closed my eyes and fell back onto the bed, unable to keep my balance, I noticed that the bed, too, had betrayed me, for as soon as I lay upon it, it began spinning. Turning ever so rapidly yet simultaneously slowly, tilting ever to the left, to the left, to the left, further and further, but never did I move. Never once did gravity intervene to remove me from this bed which was obviously performing somersaults in our bedroom. As I opened my eyes I saw that the bed was still indeed in its previously appointed location, and that all of the items on each of the shelves, the books, the musical instruments, the loose documents, the knick knacks and such, were all still exactly as they had been before. Their existence hadn't changed on iota. But my perception of their existence had been dramatically altered from the night before. And then I started to get scared...
*Remember the poor attempt of cinema to simulate LSD visuals I mentioned? I was referring to something like this. The video bears no similarity whatsoever to a real acid trip, but shares some common elements of vertigo.
But back to the story. I did the smart thing. I contacted my office and said I wouldn't be in that day, called my doctor and got in to see him that day. He took a look and said, "Well, you've got a little bit of liquid behind that ear, maybe that's all it is." So, he put me on a pack of prednisone and antibiotics and said, "Take this for a week." Let me know what happens......
......To be continued in Huh?? - Part 2: What Happens
