Can You Stand It…

…because I don’t know if I can. And I’m not even talking about tomorrow’s election, though I’m not sure I can stand that either. Whatever the outcome, the world will be significantly different on Wednesday than it is today, and I’m not especially upbeat about any of the possible shapes it could take. I don’t know that I’d be able to accept what it would say about this country and the way that power is exercised over it if McCain is somehow elected. But if Obama is elected, I’ll still have grave worries. Not about him, what his election will be a culmination of, or what it will mean to so many; but about the anger that will be sown and left to ferment in dark but significant corners of society (just look at the comments on that last link to get a sense of the fear in the face of this change). Yes, the Republican party would likely disintegrate, which might be amusing to someone more jaded than me, but the fragments that remain will be so much more dangerous, not because of their power, but because their vitriol will be untethered from and thus unmitigated by any participation in mainstream civil discourse. Perhaps the candidate who has been most inspiring for his unerring non-violent, non-aggressive response in the face of constant and focused anger can continue to absorb and reconcile the mass of contradictions sown by his predecessors, but there has to be limit, doesn’t there?

No, what I can’t stand any more of is the the ongoing failure of my ear’s healing to resolve itself one way or another. Either heal or fail to heal, but make up your capricious, feeble mind! The progress of two weeks ago, though not lost, seems to have lost nearly all of it’s momentum. Five weeks ago, having recovered from the most recent fungal infection, the tissue was about seventy-five percent healed. Over the next three weeks, it reached ninety percent healed where, two weeks later, it basically remains. There was a bit more tissue growth, but not at anything like the rate it had grown over the previous three weeks. What to do at this point isn’t clear. What changed over the last two weeks is that I’ve been using Crazy Sam’s Good Time Magic Powder® less often and my chiropractor, in the course of fixing my back and neck, has moved my jaw around a bit. My inclination was thus to go back to using the powder more often and have the chiropractor not touch my jaw anymore. The ear doctor’s initial recommendation was that we should stop the powder and just let the ear heal. His concern is that continued use of the powder (which includes a steroid, an antibiotic, and an anti-fungal agent) will cause me to develop a resistance. I suggested that leaving the tissue unprotected wouldn’t seem to lead to progress in the healing and would eventually result in an infection that would have to be treated with something. On the other hand, if we use the powder more often for a short time, maybe the momentum we had a few weeks ago will return and the healing will be done soon and I won’t have to put anything, resistance causing or not, in my ear anymore. After some thought he agreed, and suggested that I go back to using the powder daily, and I’ll return next Wednesday to see where we stand.

This leaves me in a very uncomfortable situation. Yet again I have to make these decisions for myself. I have to balance my ear doctor’s experience with the 999,999 out of 1,000,000 cases that he’s seen where everything he’s done has worked against my experience with the 1 out of 1 case that I’ve seen where it hasn’t. Obviously it would be foolish of me to ignore or discount anything that he says, but on the other hand, there have been a few cases where I’ve been right and he hasn’t. Add to that the fact that I also have to coordinate the treatments of different doctors who won’t really work together, but whose efforts will each the other’s, and once again I find myself in the unsought but increasingly common position of being fully responsible for what happens. This is reality, but that doesn’t make me happy about it. I’m left fretting about whether or not tomorrow will the right cross coup de grâce that this evening’s left uppercut has set me up for. And I’ve sought comfort in what I can: Dinosaur Jr.; clonazepam; and, at Emily’s suggestion, puppies. How are you getting through the next couple of days?

Halfway Home

This evening, after a three week wait that became less and less excruciating as I noticed my ear and jaw less and less, I saw my ear doctor. His hip is healing, but he’s frustrated with how long it’s taking. He’s pretty active, and he’s going crazy not being able to walk yet. But he was skittering around on a rolling chair, and didn’t even need a nurse to hand things to him, though there was a nurse standing in the room just in case. I sympathized with his situation, and he guessed that I would understand his frustration. I do. As I’ve adjusted my activities to ensure that the ear would have the best chance of healing, there have been ancillary problems.

The latest is my back. Because I’ve avoided any exercise that would cause me to sweat, which for me is anything more active than an elevator ride, my body simply isn’t as strong as normal, and for the last week, my back has been in various states of disarray. After three chiropractor visits in less than a week, it seems to be mending, but it had been pretty well mended Saturday, until an ill advised stretch before getting into bed undid it like a flimsy, ancient clock. (Oddly, at almost the same moment, the cable box in the bedroom, with a DVR holding years of programming my wife meant to watch at some point, gave up the ghost.) On the other hand, the TMJ disorder that had been plaguing me, and complicating my efforts to determine by feel what has actually been happening in my ear, seems to be resolved. The chiropractor said my neck was quite a mess, likely from the TMJ disorder and possibly because I’ve been turning my head to favor the ear that works better. She put everything there and down to my hips back where it belongs, and the muscles of my back are slowly reconciling themselves to this new arrangement. I hope it will hold this time. In any case, the shift of focus away from my jaw to my back has caused me to worry less about my ear.

The good news is that everything I’ve put my body through seems finally to have been justified. Over the last three weeks, there has been real progress on the healing of my ear. The tissue left to heal has gone from about a quarter of the grafted tissue down to about a tenth. The doctor would even like me to stop using Crazy Sam’s Good Time Magic Powder®, which, though it protects the ear from all manner of infection and spurs healing, irritates the already healed tissue. As he put it, I’ll have to make that leap at some point. I told him that scared me, and that I’d be willing to do it only if he would see me again in a week to make sure everything is still okay. Otherwise, I could easily imagine myself falling prey to my anxiety at the slightest unexpected sensation in the region of my ear. He understood and agreed. Unfortunately, the best we could actually do given his schedule was an appointment almost two weeks from today, which includes two intervening weekends. I’ll just have to tough it out, and I can use the powder occasionally if something doesn’t feel quite right in the ear. But given that I’ve gotten more than halfway to a fully tissued ear canal from where I was three weeks ago, things might be in pretty good shape in another two weeks.

Once the tissue has fully grown in, I will no longer be susceptible to infections, and I should be able to resume normal activities. It’s not clear to me what this will mean for my hearing, which is something I haven’t given much thought to. It seems to be improving slowly, but there’s still a constant ringing in the ear, and there are frequencies at which I have very little if any hearing. And even in those frequencies where I can hear, things sound a little far off. As I’ve said before, if this as good as my hearing gets, I’ll be satisfied. The doctor said today that he didn’t think my hearing would ever return to normal, but he did seem to think it would improve some. He declined to get any more specific, and doesn’t want to do any hearing tests until after the tissue has finished healing. On the whole, I feel awfully fortunate.

It’s Better Than an Infection?

I just saw my ear doctor for the first time since his accident. He looked fine, which I found heartening. He didn’t get up from his rolling chair as he would normally, and he had a nurse to hand him things, but other than that, he showed no ill effects of his broken hip or subsequent surgery. Fourteen months into this process, I’m doing less well.

First and foremost, there’s no infection of any kind in my ear. But there’s also no real progress on that last quarter of the tissue becoming proper skin. He kept mixing his message. He would say that it looks great, but then he’d say that we’ve gotten to this point before. He would say that for anyone else, he would just let this be and it would heal, but then he’d say that for me, he just doesn’t know. He refused to say how much longer I could expect this to take, but he did say that the coming cooler, drier weather should work in my favor.

For now, it’s keep the ear dry and puff Crazy Sam’s Good Time Magic Powder® in my ear every other day, and check back in with the doctor in three weeks. I know it would be ridiculous to compare this increasingly endless seeming situation to being waterboarded, but I worry about the robustness of my nascent emotional health.

Sam the Pharmacist

I saw the other neurotologist this afternoon, another one with whom I’m very impressed, and told her the long saga of my ear. She listened, she asked questions, and at several points she correctly guessed what was coming next. The whole case–what my doctor had done, what should have happened, and what unfortunately happened instead–seemed to make perfect sense to her, which put me at ease. I explained that this was just supposed to be a check-in to make sure that the anti-fungal treatment had been successful, to see how much, if any, damage had been done to the previously healed tissue by the fungal infection, and to decide what I should do while I was away for the next couple of weeks. She asked where I was going, and then took a few minutes to tell me about her, her sister’s, and their families’ first visit to Provincetown, from which she’d just returned. She really loved it there, which laid to rest any lingering questions I might have had about her.

She looked into my ear and confirmed that the anti-fungal treatment had been successful and that no damage had been done to the previously healed tissue. I seem to be back where I was three or four weeks ago, with that same twenty-five percent of the tissue still to finish growing in correctly. As for what to do for the next couple of weeks, she’s suggesting a new approach. She stressed that up until this point, she would have proceeded exactly as my doctor had, but that having reached this point, she would try a powder that’s only made by a single pharmacist, named Sam, in California. It includes an antibiotic agent, an anti-fungal agent, and one other agent that I can’t recall, all of which will prevent any sort of infection, along with a steroid to speed the healing of the tissue. This is likely to be more effective in dark moist places, like an ear canal beset with eczema, because it’s dry. It certainly sounded like the right approach, and I wondered why it’s not normally the first course of treatment. Her office faxed the prescription to Sam, with my cell phone number and instructions to have the powder and associated paraphernalia delivered to the inn where we’ll be staying on Thursday.

A couple of hours later, back in my office, my cell phone rang from a number I didn’t recognize, but I decided to answer anyway: “Hi, this is Sam. Did you order the powder?” My doctor’s office prescribed it for me, yes. “Do you know why she prescribed it?” I think so. “It’s because you have what’s called a weeping ear, right?” Yes, apparently so. “And you’ve been taking drops, and it hasn’t gotten better.” Well, somewhat better, b… “You’re so lucky that you have a doctor that even knows about this treatment. There a so few doctors that do. This will fix everything.”

I couldn’t tell if I was speaking to Tony Robbins, Matthew Lesko, or Charles Manson, but he was telling me what I wanted to hear. I’ve never had a conversation with a pharmacist that’s gone beyond confirming my address and insurance information and assuring them that yes, they are eye drops, but my doctor really does mean for me to put them in my ear. I wasn’t sure I was comfortable with the enthusiasm, and I was starting to get an inkling of why maybe this isn’t normally the first course of treatment. He confirmed the shipping address and took my credit card information, and told me to call them at their toll free number when I receive the powder. I’m to ask for Sam, Rose, or Steve, who will explain to me how to “puff” the powder into my ear twice a day for a month. I looked back at the original prescription, which the doctor’s assistant had given to me after faxing it to Sam, and it does indeed read “puff as BID.”

I Didn’t Expect That

This morning, as I was finishing up The Great Treatise on the Stages of the Path to Enlightenment, my ear doctor’s office called. I had a tentative follow up appointment scheduled for tomorrow evening, before we go away, and there was the possibility that it would have to be moved around the doctor’s surgery schedule, which still wasn’t set last Thursday. I assumed that’s what the call was about, though I was surprised they would call on a holiday. The call was indeed to reschedule tomorrow’s appointment, but not because of surgery that the doctor would or wouldn’t be performing tomorrow. Rather it was because of surgery being performed on the doctor himself today. He broke his hip.

I had a hard time absorbing the news. He’s a youngish man, a few years older than me, so it just didn’t make sense that he would break his hip. His office manager didn’t say how it happened and I didn’t ask. But she said that there were a few patients he wanted to be sure were seen to until he can get back to the office. She was going to arrange for me to see another neurotologist tomorrow instead. I just need to call her back in the morning and find out when.

Again I find myself deeply moved by how well others take care of me. I felt that before I got a chance to feel how frightening it is that someone I’ve come to rely on so strongly isn’t invulnerable. I’m still a little unnerved, but mostly I’m just worried about him. I hope he’s as well taken care of as he’s taken care of me. He hopes to be back in his office about the time I get back from vacation, though he’ll be on crutches for four to six weeks, which shouldn’t prevent him from working. If it had been his arms or hands, I imagine that would have been catastrophic for him. Those hands are magic. I hope everything goes as planned for him, and that he’s as good a patient as he is a doctor.

Um, Okay….

Anticipated moments of truth often turn out not to be quite so clear cut. I saw the ear doctor this afternoon as a follow up to Monday’s appointment. It took him a while to clean out enough of the purple ink (gentian violet I’m told) to see what’s going on in my ear. And what’s going on is that the tissue is healing as it should from this latest sort of infection. After this course of medication, my ear should be back to where it was three weeks ago, but from there, who knows what will happen. I’ll see him again on Tuesday, but in the short term, I can still go away on the vacation that I now need even more than I did a few days ago.

But I still don’t completely understand what’s happening. I tend to think of myself as a pretty bright guy. I pay careful attention to everything the doctor says, I try to ask insightful questions, and he answers them thoughtfully and in detail, but every time I think something is catastrophic, it seems that it’s not. And every time I think things are okay, it seems that they’re not. I told him that the ear felt better on Tuesday, but that yesterday, it itched in the ear canal and that the outer ear was turning red again. He said that the ear turning red didn’t have anything to do with the infection (a statement supported by the fact the ear is now red, even though the infection is gone), though he wasn’t sure what was causing it. That was unnerving because it was only due to the redness that I decided to see him Monday. Had I ignored that, I’d be in pretty bad shape at this point. I’m having a really hard time trusting my instincts, but I don’t what else to look to between doctor visits. My sanity’s more than a little frayed.

I even mentioned my idea of giving up on the ear altogether to the doctor. He frowned a little and explained that that wasn’t really an option. At this point, he’s just trying to get the tissue to heal without infection. That’s independent of any attempt to restore the hearing. Giving up, at least in a passive sense, would just be allowing infection to spread. There is a more active version of giving up that might be available, but that would mean yet another surgery and another healing process. It may come to be justified, but not yet. It certainly wouldn’t get me out to Provincetown and taking pictures any sooner or more reliably. And so I’ll go on.

The Waiting

Sometime this afternoon, once my ear doctor has completed his day’s surgeries, I find out what’s next for my ear after Monday’s setback. For a day or two after Monday’s visit, the ear felt better, but yesterday evening, it started to feel like it did before Monday’s visit. Today, it doesn’t feel that bad, and, of course, not being able to see into the ear, I have no idea what’s actually happening in there. Is the fungus running riot again? Is my ear just slowly and determinedly continuing its Sisyphean project of growing tissue, irritated but making progress after the resolution of this latest disruption? I have no idea, and I’ve pretty much lost all ability to judge for myself. So I wait in a somewhat paralyzed state of anxiety, slightly moderated by low doses of clonazepam.

But in the swirling of worry and speculation, I keep returning to one insight. For thirteen months, the hearing in this ear has been reduced and further disrupted by a pretty constant ringing. Except for the couple of weeks after the first surgery, when I had to adjust to my altered sensory capacity (more on that later perhaps–it’s actually an interesting story I haven’t put all in one place yet), I haven’t suffered in any meaningful way from that reduced hearing. I am, however, suffering more and more from the attempts to restore it. At what point does that effort become counter-productive. How many vacations am I willing to have cancelled, shortened, or undermined? How many periods of despondency am I willing to endure? How much surgery, cauterization, and other pain? How long am I willing to forgo exercise because the ear can’t tolerate perspiration?

The doctor won’t be pleased with this line of questioning. He has been patient, but incredibly determined that this be fixed. He seems to be pretty driven to heal. I would guess that’s why he decided to be a doctor in the first place, and I’m sure that’s a significant part of what makes him so good at it. But for me, there’s an important context for this healing. Fixing the hearing in this ear cannot become more important than the hearing itself is, and I don’t know how important the hearing itself is. I’m beginning to suspect that it’s not important enough to warrant what may be necessary to restore it, particularly given what seems to be the decreasing likelihood of the success of those efforts. I keep thinking of my wife, who hasn’t had sight in one of her eyes for more than forty years now. If asked what she would want to change about her life now, I doubt that restoring sight in that eye would appear on that list, or if it did, it wouldn’t be very near the top.

EPIC FAIL!

It doesn’t look like I’ll be in swimming in Provincetown next week. My ear started bothering me this morning. It felt itchy and warm, and even started to hurt in the ear canal. The ear itself, especially around the edges and the lobe, turned fairly bright red. So I got an immediate appointment with the ear doctor and headed up there. He looked in my ear and discovered a fair amount of fungus growing in the ear canal, a known potential side effect of extended use of antibiotic drops. He cleaned it all out and filled my ear with deep dark purple ink that will permanently stain all that it touches (so old pillowcases and sheets on the bed tonight) and presumably kill the fungus, and he gave me prescriptions for anti-fungal drops and still more antibiotic drops to follow up with. We’ll check in Thursday afternoon to see where things stand. If I respond well to the treatment and things have improved enough, I should be able to go on vacation, though there’ll be no swimming. If I don’t and they haven’t, there’s the real possibility that I’ll have to stay home for further treatment.

Right now, my focus is just on getting the healing process far enough along so that I can go on vacation. He couldn’t really tell me much about the longer term impact of this. The fungus apparently sends roots deep into the soft tissue that’s been having so much trouble healing, and where the fungus is removed, there will be holes and granulation tissue, which will have to heal all over again, a process with which we’ve had limited luck at best so far. He can’t yet say how extensive a problem this will be.

This is the first time I’m really ready to give up, whatever that means (what would I surrender, and to whom?). So far, it’s just me sitting here sobbing that I’m scared. I’ve had so much help and support from so many people, and it’s meant so much to me, and, perhaps bizarrely, I feel like I’ve let everyone down. I suppose in the most immediate sense, that comes from all of the people who’ve planned their vacations around being in Provincetown with me and my wife. But I’ll absorb it and get on with things–the catharsis of crying certainly helps. And I do have enough of a sense of perspective to understand that having a fairly luxurious vacation disrupted is hardly the worst thing that can happen to a person. Hell, our next door neighbor has just had her last attempt at cancer treatment fail, and now she’s dying. That is their suffering, and blessedly, mine is small by comparison.

I keep thinking of a Samuel Beckett quote from The Unnamable: “…I can’t go on, I’ll go on.” That is our bravery in the face of adversity, because what would not going on mean?

Ancillary Clean Up

I’ve started wearing my new mouthguard, and it’s making a big difference. I think it’s helping with the TMJ disorder, though I don’t know for sure, but much more obviously, it’s helping me to sleep. I’m not certain how to explain this, but my best guess is that I’ve apparently been holding my jaw clenched at night, which makes it more difficult for me to relax and sleep. With the mouthguard in, I have to put my lower jaw in an unfamiliar position, much further forward. At first, I thought this was going to be unpleasant, but before I got much of a chance to worry about it, I was asleep. And my jaw does feel a bit better, though there are so many things still going on in the area, it’s hard to know for sure. The ear itself still feels clogged, and sometimes it hurts. But the discomfort is lessening and becoming more localized. The hearing is still pretty limited and there’s still a pretty constant ringing in that ear. There also still seems to be some congestion on that side of my head, but it’s minor.

The last piece of the puzzle to try to solve is the eczema that has consistently disrupted the healing of the ear. The ear doctor has explained eczema as a systemic immunity problem that manifests locally. According to him, medicine is only able to treat those local manifestations where and when they occur–it’s unable to do anything about the broader systemic problem–and any success in treating it locally will be temporary (and, in the case of my ear, impossible because of everything else going on there at the moment). I brought this to my acupuncturist, and he suggested a naturopathic remedy of sulphur, which I started yesterday in incredibly tiny doses. It would be really nice if it worked, but I have trouble believing it will.

Jaw Is the New Ear

I saw my dentist this morning, and he confirmed the ear doctor’s suspicion that I’m suffering from TMJ disorder in the left joint of my jaw. It doesn’t seem to be a particularly severe case. He’s going to start by giving me a soft mouthguard to wear when I sleep, and if all goes well, that should provide relief within a week. If that doesn’t work, then we’ll switch to a hard biteplate. He took all of the necessary impressions this morning, and I’ll be able to pick up the mouthguard Thursday morning. And except for the jaw issues, my ear continues not to bother me, though I still can’t hear very well on that side. At this point, I don’t know what would be causing that. We can start to focus on that when I see the ear doctor again in a couple of weeks.