picking up where we left off …
It’s been several weeks since the last entry. Initially because there was so little change, and then because writing about my hearing situation seemed less important than other things going on: Wendy had some surgery, I had to focus on a final push to finish up revisions of Economic Engine and get it ready for a September performance.
About a week ago I started taking a diuretic, on the possibility that my hearing problem might be some form of Meniere’s syndrome, which is supposed to respond to this kind of therapy. I”m not sure how long this is supposed to go on, but I’m not particularly hopeful that it will be effective. As I look at the diagnostic indicators for Meniere’s, they include sudden onset and a “roaring” tinnitus (both of which I have, if “roaring” describes my white noise generator). However, the defining indicators seem to be vertigo and the fact that the hearing loss comes and goes – neither of which describe my situation. Anyway, I will see the ENT doc later this week and try to figure out where we go from here.
Where we are now is pretty much unchanged. Very little, if anything, gets in my left ear. Though there are occasional moments of sensing a sonic “presence” on my left, and a slight sense of “stereo-ness.” But mostly there’s just a sense of aural emptiness on my left. And the white noise, which is constant through everything. Listening to music, participating in conversation, walking down the street, there’s always a constant white noise from the left, always louder than anything in the environment.
When I’m writing, the white noise is still there, but I seem to be able to focus beyond it and hear things internally. Thank goodness! But when I stop, I immediately become aware that the white noise has been there all along.
Was at a family reunion in Missouri this past weekend, and had a couple of strange moments of self-awareness concerning my hearing. One was how my daughter and all the cousins of her generation referred to me and Wendy as her “deaf parents,” humorously and lovingly, but a reminder that I am not going to avoid various artifacts of infirmity as I age. Despite the fact that I can still run 3 miles and have lots of energy, there are unavoidable negative consequences of continuing to stay alive. Though thankfully, none negative enough to cancel the positive aspects of staying alive.
The other funny situation was getting a call on my cell, with someone looking to talk to my son-in-law, Josh. I had the phone up to my good ear, said to Josh “It’s for you,” and I thought he said “I’m not here.” What he said was “I’m right here.” When I started telling the person on the line that Josh couldn’t talk, he looked really confused, then we straightened it all out and I gave him the phone. What I realized is that when I’ve got the phone on my good ear, I really can’t hear anything else clearly. So telling me what to say while I’m on the phone doesn’t work. I’ve got to take the phone away from my good ear in order to let the external sound in. Can’t do the 2-ear multi-task anymore.
Another good one was when I accompanied Wendy to the surgeon’s in the follow-up visit after her surgery. There were some drains which had been left in the wound, and he was to remove the drains during the visit. Wendy was wearing one of my brightly colored Hawaiian shirts. When the doc came in, I heard him say: “better take off that fancy shirt and put on a gown. I’m likely to make a mess when I remove your brains.” Sitting in the corner, I repeated back what I’d heard, and we all cracked up. Once we’d stopped laughing he assured me that he was going to remove her drains, not her brains. I was quite relieved.
where I am is where I’m likely to be …
It’s been a while. Mostly because I don’t want to deal with what I have to say. Also (perhaps to avoid thinking about my hearing problems) I’ve been giving every available moment of the last week to revisions of The Economic Engine, which is finally about done and ready for a NYC premiere either this Fall or next Spring. … In any case …
Last Tuesday, July 1, I went to the see the ENT doctor who had been fairly hopeful when we last spoke on the phone. Tuesday she looked at the test results from the audiologist the week before. She basically said there was not really anything to do. Like the audiologist, she said that a hearing aid would just amplify the garbage I now hear very softly in my left ear. That’s the kazoos, which are attenuated by about 70dB. Which means that when you speak into my left ear it sounds like you’re playing a kazoo over in New Jersey. And what would be the use of hearing everything translated to a kazoo, but loud?
She also went through the various surgical possibilities: the BAHA, which is a titanium plug that gets implanted in your skull, then uses the bone to transmit sound to the good ear. Or the cochlear implant, which I wrote about in the last post. She had an interesting take on the cochlear implant, though.
When I described the various stories people had told me about their own hearing loss or a friend’s hearing loss, and how they’d been resolved either with hearing aids or through surgical intervention, she said “I wish any of these were the case for you.” The situation seems to be that my middle ear works just fine, but my inner ear doesn’t. This means that either the cochlea doesn’t work or the auditory nerve doesn’t work. What the cochlea does is take the tiny movements transmitted by the middle ear and translate them into electrical impulses which are transmitted by the nerve to the brain. But she says there’s no way to tell whether the problem is in the cochlea or the nerve. If the problem is in the cochlea, then a cochlear implant might help, even though there could be a big cognitive conflict between my good acoustic hearing in my right ear and the electronic hearing supplied by the implant to my left ear. However, if the problem is in the nerve the implant wouldn’t do squat. Other than to definitively destroy any vestigial hope of recovery in the left ear.
The doctor did suggest a kind of last ditch effort of going through a treatment of diuretic drugs. This would be on the off chance that what I’ve got is Ménière Disease. Of course, the problem is that I don’t have any of the classic symptoms of Ménière Disease other than the hearing loss and tinitus. The usual symptoms include variation in the hearing loss over time (i.e., the hearing returns after the loss, then goes away again, then comest back again, etc.), and vertigo. I haven’t had any significant variation in my condition for about a month and a half, and I haven’t had any vertigo. If I go on the diuretics, side effects include peeing all the time, disturbing tingling in your hands and feet, and impotence.
After my experience with the Prednisone and steroid shots-in-the-ear, I’m less than enthusiastic about jumping into another round of drugs with nasty side effects. She gave me the prescription, but I haven’t had it filled. I’m going to talk with my regular doctor first, and give myself a little time to think about this. Doesn’t seem like things are changing, and I did do all the initial treatments as quickly as possible, and they don’t seem to have done anything.
So where I’m at now is probably where I’m going to be. That’s the bottom line. I will still explore acupuncture and any kind of alternative solutions, but it seems to me that the medical reaction is that no one knows what’s wrong or what to do about it. It’s a drag. It’s bad news. But it’s not the end of the world. I’m not dying. I’m not totally deaf. I’m able to do just about everything I’ve always done except hear stereo, and parse dense sounds in loud rooms. And, of course, I’ve got to turn my head a lot to hear things on the left, or I have to ask you to move around to my right side if we’re going to walk and talk.
The professional things … mixing live sound in concerts, doing stereo mixes for CD … I can ask other people to help me with. In those situations I know enough of what I want to be able to describe it. And I have plenty of people I can trust to realize it for me. In the realm of quotidian interaction with the world, I don’t think I’m a lot worse off than many other people with different kinds of hearing problems. It makes me realize how lucky I was to have such good hearing for 60 years. But if things stay as they are now, I can still get along just fine with what I need to do each day. I say “what?” a lot more than I used to. But that’s something I can live with, and something the people in my life will have to get used to. What?
