Juggling in Handcuffs

My Brain Surgery Diary

(November 1998 to February 2001)

© 2001 David Scott Marley

---

Oh, yucko, don't want to read about that.

Hey, it's fine by me if you don't want to read this. I'm really not trying to ram this stuff down anybody's throat. It's just going to help me to get it down, and maybe it'll be of interest or even help to others who are either concerned about what I'm going through or are going down a similar path themselves.

Let me say by way of disclaimer, right off the bat, that I have no particular knowledge of anything here. I'm just a guy writing about his own experiences. This is how things look to me, but I'm not a doctor. I've read enough to know that every surgery is different. Every medical experience, really.

Also, I am constitutionally incapable of keeping up a diary. I've tried it several times over the past few decades, and I tend to forget for a while after a few weeks. This is going to contain great big gaps, I can guarantee that right now. There will be one for the hospital stay, of course, but there will also be some later on, and they might just be because I didn't feel like writing here for a while, or had other things to do. So don't assume that if I haven't posted here in a while I've necessarily suffered something awful.

So. Where am I today.

12 November 1998

Yesterday about 1 p.m. my doctor at Kaiser called. He told me that my head X-ray has revealed a small benign tumor. Say what? This was a shock, to say the least. He was talking at first about immediate surgery but admitted he didn't know much about brain surgery, which is not his field of expertise. (Hey, if it were, I wouldn't be seeing him yet, right?)

There wasn't any immediate surgery, as it happens, and it's just as well, as it would show that the tumor wasn't really so benign. Hospital beds and appointments for operations are not to be had at a snap of the fingers, even when a doctor requests them, unless a life is at stake. And this is not so urgent that it justifies pushing others out of line.

But I did have a meeting this morning with a neurologist in Redwood City. I learned that what I have is called an acoustic neuroma. A tumor growing out of an acoustic nerve.

Today I did some Internet surfing and found out that acoustic neuromas are almost invariably benign. Good! However, every surgery is different. You have to take what you read on the Internet with a certain perspective because the majority of people who have routine, complication-free surgery never bother to tell their stories on the Internet or join support groups. Some people report complicated recoveries of six months or a year; some never get all their powers back. But this is not a random sampling either.

There's lots of information on the Internet about acoustic neuromas. Neuromae?

I'll probably be in the hospital for under a week. Again every surgery is different and I've read about people who have been in the hospital for as long as three months. Those are the exceptions and I don't yet know how much weight to give them. Not that it matters: what am I going to do, not have surgery because of this? There are questions about methods, but basically I'm going to have to go through with this one way or another. There isn't a decent alternative.

It sounds like a typical recovery period, once you get home, can be from a couple months to a year. Again, I don't yet know what my odds are, and I suspect that's all moot anyway. I will be dealing with the reality of my own situation, regardless of what the odds say. If I'm better or worse than average, what will the theoretical average matter? Do I stay in bed longer if I get better faster than the average? Do I push myself to do what I can't manage because I was supposed to be recovered by now?

There is sort of an alternative to surgery, radiation treatment, but from what I've read it doesn't seem very effective for acoustic neuromas.

I work at home so I can afford to take it pretty easy. If I can edit and write in bed and then get across the hall to sit up and type my work at the computer, I'll do fine even if I'm weak for a while. There won't be a lot of money coming in for a while. I'll soon be filing for bankruptcy and disability to make things as easy as possible on me.

The big choice I'm likely to be faced with is the method of surgery. Going in behind the ear gives the best chance of preserving the hearing but gives a greater chance of damage to the facial nerves. Going in through the ear destroys all hearing out of that ear but maximizes the chance of avoiding facial nerve damage. This is maybe not going to be as difficult a choice as it appears to be, because from what I have read the hearing that is already lost is unlikely to be regained. I have no hearing in my right ear at present. None. It's not pleasant to think about the fact that I'm unlikely ever to hear out of my right ear again, not when I had assumed day before yesterday that this was caused by some virus and my hearing would come back after it was over. So going in through the ear seems the optimal alternative. Goodbye to half of my hearing.

Anyway, this is all just information from the Internet and I'll know more after I talk to the neurosurgeon who is going to be doing the operation, which will be sometime next week most likely. (Apparently there are actually two people to be involved, a neurosurgeon and a head and neck specialist.)

Some medical history: It's a damn good thing this is a benign tumor because it seems to have been around for a long time. I first had some dizziness a year and a half ago. This was complicated by coming down with the flu about a month after. The symptoms of this flu, which I was not alone in complaining of, were headaches and dizziness. So I'd assumed this was all just the flu for a long time. Heck, maybe it was all the flu. And the flu took a long time to get over. I had the vicious thing for about six weeks, which was quite typical. Then I had my wisdom teeth out. I have since been warned that no one in his right mind has all four wisdom teeth out at once, at least not after adulthood, but I knew no better and that's what I did. And that led to a relapse of the flu for another six weeks. I had some severe eyestrain and headaches this summer because I was pushing myself to finish some projects, and ended up not wanting to get out of bed for two weeks. Since then I have slowly been getting better, but I have not recovered. And then this last week has been a step backward, a return of the dizziness a week ago, and a bad headache on Monday.

I have an MRI examination scheduled for Monday afternoon. From what I have read it takes a couple of days to get the results on that. I don't know if it will take less time than that, from this not being a routine exam but a prep for surgery. Maybe they'll want to see the results right away and not wait in line for them. I don't know. I have read that the MRI is not painful but involves lying still in a plastic tube for 3/4 of an hour while the sound of jackhammers goes off near your head. What fun. I have read that I will be given earplugs. Maybe I should bring my own in case they're stronger.

13 November 1998

There may well not be much to report until after we see how the surgery goes. The hearing business may be more complicated than I realized. I knew that things were better in the mornings. Recently, for example, I got up in the middle of the night to stagger to the bathroom and I noticed that my eyesight was pretty good without my new glasses. (I've had some growing double vision and new glasses to correct it.) I'm a lot better if I've been laying down for a couple of hours but I get tired quickly by being on my feet for a few hours.

So this morning I noticed that I could hear about as normal out of my right ear. My hearing in my right ear has always been weaker than my left, but there it was. Yesterday with the neurosurgeon I couldn't hear a thing out of the right ear. This morning I snapped my fingers by my right ear and things sounded fine.

Dave says that the odds of avoiding both damage to the facial nerve and hearing loss are very good in both cases, so that the surgeons might as well enter behind the ear and we'll all hope for the best. I haven't seen the odds myself and in any case we don't know much until we talk to the neurosurgeon. (I seem to keep saying that. I hate this waiting.) If the risk is 1% vs. 10%, that's one thing. If the risk is like .4% vs. .5% or something, that's a whole different matter. But we don't know what the MRI will show or what the surgeon will say. Maybe the tumor will be awkwardly situated. Maybe it won't. The odds of a trouble-free surgery seem pretty good, like better than 99%, but the MRI might well show something that increases or decreases that.

I hate this waiting. I'm trying to work normally (I've picked up some freelance work to help pay the rent) but I'm really wishing we could skip straight to the part that is making me nervous.

Later: I've noticed how often we get asked a conventional "How are you doing today?" or the like. I have to stop myself now and remind myself that these folks most likely do not want to hear about my upcoming brain surgery. But that's what's obsessing me, obviously. I'm trying not to dwell on it. I find myself thinking about little details that wouldn't occur to you otherwise. It isn't the thought of somebody poking around in my brain with a scalpel that obsesses me. It's whether I ought to just have my whole head shaved when the time comes for surgery. Like I'm going to want to wash my hair for the next month. I may just have it all shaved off. Sheesh, I'm really going to look like Frankenstein's monster for a while. And which books should I bring to get me through the ICU after the surgery. Note to myself: Bring earplugs. I've read it's noisy with all those machines and I might be there a few days. I'm a light sleeper.

I've lined up a few rides to Redwood City and I have a few friends lined up to visit or take me on errands during the recovery. This may turn out to be, among other things, a great lesson in how to depend on other people and not be such a damn loner all the time. I mentioned this to Dave and he said something like "Yes! Yes! Your feeling so much like you don't want to be a burden on anyone drives me crazy sometimes!" I guess this is one of those times when it's okay to be a burden. Or at any rate I don't see how I'm going to get to Redwood City by myself. I feel guilty about needing a ride to Redwood City but at the same time I know it's just part of the human condition to need to depend on others here and there.

14 November 1998

Continuing to match offers to help with tasks I think I'm going to need done, especially rides to the doctor and the store. Dave is taking care of rides to Redwood City for himself. So I will probably have some visitors in the hospital, which is an unexpected pleasure. I wasn't expecting any until I got back home.

My brother, who is a paralegal, says that I should give Dave temporary power of attorney. This, he says, is a more powerful way to ensure him access to my bedside during my time in ICU. Telling the doctor about my same-sex partner is one thing, but if Dave has temporary power of attorney he has the legal right to see me in ICU which won't depend on somebody understanding about same-sex couples. This is 1998 but some people still don't understand, sad but true. My brother is proving a good source of this sort of stuff. And he wants to be of use and lives too far away to visit. Dave has talked to him.

My mother may be flying up. Or driving up. Or maybe both parents. I persuaded them not to visit me in the hospital, at least not for the first few days. What are they going to do? They can wring their hands at home or they can wring their hands in the hospital corridor. Obviously they won't be admitted to the operating room, and probably not to ICU either, which may be just as well anyway. I'm figuring I may be awfully weak right after the operation and I'm not really going to want to see anyone but Dave. Dave has seen me at my worst and won't mind if I just want to lie there for a while. I'd rather have my parents around during the recovery. Somebody with a car, yes! Somebody to run to the store! And the truth is that watching me recover is going to be kind of dull. They might as well make me lunch and help vacuum or wash clothes or something and then tour Golden Gate Park for the rest of the afternoon. It will be nice to have the help but mostly I suspect I will just want to lie there and sleep.

17 November 1998

Yesterday I went in for my MRI. That stands I think for Magnetic Resonance Imaging. They put you in a narrow metal tube and the sound of baby jackhammers goes on around your head. The whole thing takes between a half hour and an hour. They could take you out between each pair of scans, which last a few minutes each, but of course this is a good way to lengthen the time the whole thing takes and they would rather not do that. They only pulled me out once to inject something into my arm. Nothing about it is painful but it's disturbing. You're in a very tight space for a long time. It would be a lot easier if you could read or something, but of course you can't. Just you and your own thoughts in a little metal tube. And the injection left a bruise the size of a dime.

I am told a lot of people freak during the MRI scan. Well, it is unnerving. I closed my eyes and focused on my breathing the whole time but I took that kind of meditation for two and a half years in Greenwich Village and even ten years later drifting out like that is still pretty easy for me. But not everyone is going to be able to do that. It also made a difference that at least I knew what was going to happen well in advance. I'd read about MRIs on the Internet. If I'd just shown up without knowing what was going to happen and they gave me a minute of pep talk and then rolled me into this tight tube, I think I'd've been plenty more nervous than I was.

I did find myself at one point wondering what it would be like to be in that tube during a major earthquake. I decided that there are worse places to be than inside a metal tube, though. The building could just about collapse around me and I'd be untouched. But it would be scary and I can't fault those who freak.

Tomorrow I have my appointment with the surgeon in Redwood City. I gather I'll have a date for the surgery when I get done. I still hate the waiting. This morning when I was still lazing in bed, I got a phone call. My appointment had been moved to November 30. Oy. Then half an hour later I got another call. My appointment was back to tomorrow but at 11:45 a.m. instead of 3:00 p.m. Thank you, whoever is looking out for me, because I do HATE ALL THIS WAITING!

20 November 1998

The surgery is not until 10 December. I have an appointment to see the surgeon on the 7th. I don't know how I'm going to wait so long. Argh.

The surgery will be in the very early morning. I'm asked to be there at 6 a.m. So I suppose surgery will actually begin around 7 a.m.

I have spoken to the surgeon on the phone. It seems more likely than ever that I am going to lose all hearing in my right ear. This upset me quite a bit but my partner and my mother both said if this is the worst result of this all, we'll consider ourselves lucky. And of course they're right. It's still a blow, though. I knew it intellectually from reading it on the 'Net but that's not as vivid as when the surgeon says it to you himself.

I'm very spacey today. I take things day by day and how I feel one day has no bearing on how I'll feel the next. I am very lucky to be on the Kaiser program now and have them looking after me. Otherwise I'd be at the county hospital and I'm sure this would be a lot harder to get through. Today I'm just laying in bed and writing and feeling rather incoherent. Fortunately there's not a lot for me to deal with. I can afford to lay in bed and feel incoherent.

22 November 1998

The appointment with the surgeon a few days ago was a comedy of errors. (This happened before the previous entry but I didn't tell the story before, so I'll do it now.) Soon after we got in the car in San Francisco and started to drive to Redwood City, Dave realized that the MRI scans were still in the apartment. We were supposed to be carrying those along with us. So I called the hospital and asked them whether they'd rather have us on time without the scans or late with them. They told us that the scans were the most important thing. We got to Redwood City with the scans about 45 minutes late, and about five minutes too late to see the surgeon, but I did get some more information about what to expect and had another cardiogram while I was there, because they wanted to see that. I'd already had one in Oakland but what the heck, it only costs me five bucks and if it makes the surgeon happier it's a bargain. He's going to be poking around in my brain, I figure I'll buy him flowers if that's what makes him smile. I know the cardiogram won't show much -- nothing but the brain scans has shown anything unhealthy -- but what the hey.

I am off balance most of the time now. Yesterday was a very iffy day and I spent most of the day in bed, not from tiredness so much as from feeling off balance and not wanting to expend the effort needed to walk, even around the apartment. I feel better today, and sitting at the computer is just about effortless. Walking around still takes some effort but I feel like I could make it to the store or something if I had to. Though I'm just as happy to lie down and edit or read.

It's a good thing that my work can be done lying down or sitting. Still, if I had a nice comfy desk job somewhere I might feel less left to fend for myself all the time in this rough life. And if I had a company giving me some nice fat HMO package, this might have been diagnosed long ago.

But I also have to admit that this current mood of mine is mostly upon me becuase I'm feeling out of sorts; when I'm feeling better I think that I was born to live by my wits and not play it safe. And it doesn't sound like there are so many comfy desk jobs any more where Big Brother will take care of you in exchange for your soul. The last I heard, HMOs had gotten in the habit of canceling health insurance accounts for anyone they thought was going to cost them too much money -- in other words, after a health problem appeared. I've been reading about woman who have pregnancies with complications and their HMOs pull the plug on paying for it before the child is even born. I feel pretty lucky and keep my fingers crossed that something like that won't happen to me. Not that it should, there's not a previous diagnosis anywhere waiting to be found that would make the brain tumor a "previously existing condition". I didn't have an inkling until my tests at Kaiser. But there's always something to worry about I guess. I should just go lay down and read.

This surgery is a risk, though a small one, and I have to accept that and I don't think anything is going to protect me from that. But my muse is not ready to let me die yet and is doing what he can to keep that from happening. I've learned too much to be let go just when I'm getting really useful to him. The libretto for Serpentina is so good and flowed so easily from me that I feel I've made a real step forward as a writer here, and it would be a great shame not to stick around for a while and get to use that hard-won ability some more.

Later: I should add that the tumor is now known to be rather large, and the next few months have the potential of not being pretty. For one thing, I not only have one tumor, I have two, as there is a small cystic tumor as well. Fortunately it's as benign as the other but now they have two to remove. And I have hydrocephaly, which is a buildup of fluid in the brain cavity because it isn't draining as it should. Sometimes this is taken care of simply by the removal of the tumor that is causing it, but if it isn't, I'll have to go back for surgery a second time for them to install a tube to drain the fluid from my brain into some other body cavity such as my belly.

30 November 1998

I haven't written in a while but there's really not much to say. Just waiting for the surgery.

My "censor" seems to be quite a bit weakened. Whatever you want to call that part of the mind that tells you to keep that thought to yourself or work over the spelling of that word. I'm noticing that I don't spot misspellings as automatically as usual. Usually they stick out like a sore thumb to me and I can't help but notice them. Now I have to think more about it. [Much later: I went back and proofread this after I'd recovered, which is why you're not seeing so many typos.] I also find myself saying what's on my mind more, without thinking twice about it. My partner, though, says that he's noticed it too and this is an improvement. He says I keep my feelings to myself too much and he's tired of guessing at them anyway. So I guess there's nothing to worry about yet on that count. Still, it makes editing harder when you have to really think about what used to hit you without any effort.

My theory is that my mind is so tired that lighter functions like that are just exhausted and therefore the barriers are down. I started to decline a bit immediately after the diagnosis, which indicates to me that this isn't a physical change suddenly happening to me but a mental one. As if my body were saying, okay, now that you know what's wrong and that someone else is going to work on it, I'm resting until needed. I feel like I've been keeping things together by sheer force of will for a terribly long time, so my body wanting to relax is probably just to be expected. It'll be soon enough to be pulling my strength together for the recovery, I'm sure.

8 December 1998

Surgery is in two days. Yesterday was the meeting with the neurosurgeon, Dr. Nutik. I feel very comfortable being operated on by him. He spoke about the risks of this surgery. There isn't a decent alternative to the surgery so to a large extent all I can do is go ahead and hope for the best. If I don't have the surgery I'm dooming myself to invalidism the rest of my life, and unpleasant death in a very few years, maybe in a delirium if I'm lucky. So what am I going to do, say no to the surgery? Still, it's not a sure thing, and I suppose he has to make that clear. There is a small but real chance that I will go happily to sleep in a couple of days and never wake up again. There is even a more awful chance, Dr. Nutik says, that this surgery could make matters worse and I could wake up with vastly reduced mental powers. There's no point in dwelling on it but I won't pretend the possibility doesn't exist either.

Fortunately the chance of any of this is remote.

A more realistic and upsetting probability is that the tumor, he says, is "unusually large" and is messing with more of my brain than I knew. I am very likely to wake up with temporary total paralysis. Fortunately this will only last a day and fortunately I'll be so doped up on painkillers (morphine even, I have been told) that I'll hardly notice much. But not a comforting possibility to look forward to. The part of the brain that deals with movement and coordination could well be so irritated that it just doesn't want to work for a day, I guess. If it happens, I know I'll spend that first day fearing it will be permanent. It just about never is, but I hope that I can remember that and have faith in that knowledge. Or that the drugs are so strong that I don't much care. Just keep a smile on my face and you can do what you want to my brain. Ouch.

The possibility that half my face may be paralyzed for six months or so is quite a bit greater than I'd realized. I may well wake up unable to blink with my right eye and need to learn how to keep it moist. None of this is so awful that I can't see my way through it, and none of this is worse than what I am going through or have recently known, but still, the next six months might very well not be pretty.

9 December 1998

The last entry before surgery, which is first thing tomorrow morning. Wish me luck.

16 December 1998

Just to let you know I'm back home from the hospital and all things considered in pretty good shape. More later.

Later:

The day of the surgery itself is the roughest on all who care about you, of course, but it's the easiest time for you. Jennifer drove Dave and me to the hospital. We were asked to get there by 6 a.m. and in fact we got there a half hour early but then we waited a lot. They showed us to a room, and I changed into a hospital gown and got into bed. Around 8:30, a nurse came and said she was going to give me something to relax me a little. That's the last thing I remember, not even the shot itself. Dave later said it put me out at once. (I suspected afterward that the shot was really meant to knock me out and that "relax" was a white lie, but then I found out later that it really is meant just to relax you, and that most people stay awake until they're in the operating room and the anaesthesia starts.)

The next thing I remember is coming out of some kind of pleasant dream (don't remember what) into chaos. Bells, buzzes, beeps, chatter. I was still in bed, only now I was in another room, in one of a whole line of beds. I knew I had to be dreaming still because a clock hung in front of me and it said 7:00 which didn't make any sense; the surgery was not going to take anywhere near that long. And nurses were fussing back and forth looking into my eyes with flashlights and taking my blood pressure and chattering among themselves about their favorite ways of making tamales. (Yep, tamales. I remember that part vividly.)

But it wasn't a dream and Dave later told me the surgery took eight hours from ten to six. An hour in the recovery room is about right.

Finally someone decided it was time for me to leave the recovery room, and a man wheeled me to my room on the sixth floor. I had thought I would be in ICU for two or three days and then in a regular hospital room; as it happens I was in something a bit less extreme than ICU and never left it until I went home. (Later: It's called the craniotomy ward.)

I felt great. I couldn't believe how well I felt. I had just had brain surgery and I felt absolutely terrific, other than my speech being thick and overall feeling a bit weak. But I think that must have been because all the anaesthesia hadn't yet worn off or something, because in a few hours my head felt badly swollen and I had a bad headache.

I had been told in advance that very strong painkillers were available so that there was no reason I should be in pain at any time. It didn't quite work out that way. My first night nurse's attitude seemed to suggest that there was a painkiller shortage and that I needed to be rationed out as little as would get me by. Tip to anyone who goes through this: If you slightly exaggerate how much pain you're really feeling, that'll cancel out your nurse's inclination to scrimp a little.

I had a terrible headache by ten or so. My first two doses of painkiller that night did nothing that I could tell, though of course it's also possible that they did a lot and things would have been much much worse without them. The night nurse said encouraging things like "This isn't going to kill you, you know." Gee, thanks.

Finally my third dose of painkiller at around three in the morning started to have some noticeable effect and I could think again.

What I'd read had suggested that the usual course was to try to get brain surgery patients up and around starting on the second day after surgery. At Kaiser, though, it's the policy to try to get patients up and around the first day after surgery. "Sure he'll get sick," Dr. Nutik said casually to my nurse, "He's going to get sick sooner or later no matter what. Better it happens today." He told me that the dizziness was part of the process of healing, and that I should go with it, even encourage it. Turning my head side to side, he said, would get me dizzy, but it's the patients who get themselves good and dizzy who soonest learn to overcome the dizziness.

So. My head hurt every time I moved it, and I couldn't sit up in bed, and the nurses were lecturing me on how much I needed to get out of bed and sit up in a chair. A nurse would come by to ask me if I was ready to get out of bed and I thought, I can't even sit up by myself, so how can I get out of bed with only her to support me? I'll fall to the ground at once. So I'd say no, I can't do it yet. And twenty minutes later another nurse would come by and ask the same thing. Finally around 11 a.m. I reluctantly told a nurse that I'd try if she would help me, and in a moment she'd summoned four nurses and one big burly man to surround me and help me out of bed. I think if I'd realized there would be that kind of help to keep me from falling, I wouldn't have refused for so long. I put my arms around the neck of the burly fellow and he lifted me up onto my feet -- my legs were ready to give way as soon as I put the least weight on them, so I was clinging for my life at that point -- and he lowered me into the chair.

Right away they asked me if I wanted to go back to bed. But sitting in the chair wasn't bad, it was just the getting there that had been so hard. Dr. Nutik had said I should do things like turn my head side to side and make myself dizzy, so I did. Finally after about three hours of stuff like that I had made myself so dizzy that I called for help to go back to bed.

There was a lot of miscommunication between me and the nurses. By far, most of the nurses I had were women with foreign accents. "Are you no shaded?" asked one. "What?" I said. "Are you no shaded?" she repeated. She just kept asking the question over and over again, getting increasingly testy about my lack of an answer. Finally, though, it dawned on me that she was asking me if I was nauseated. And of course my own speech was thick. (Now I seem to be speaking more clearly than I was in the hospital, or at least others tell me that. My speech won't be back to normal for four or six months, most likely.) So we were having trouble getting things across to each other. I'm afraid I get angry and panicky when I feel helpless, and I could feel myself getting that way sometimes. I couldn't get up or feed myself or anything without somebody else's help, and here I am having trouble asking for what I need. If I didn't make the nurse understand what I was asking for, I had no way of getting it for myself, and that frightened me.

The first night after surgery I found it impossible to swallow anything, even my own spit. My nutrition and liquids came via an IV drip. But by the next day I could swallow a little. I had thought from my reading they were going to wean me onto clear liquids first, but at the end of the first day after surgery they actually gave me some soft, solid foods. Spaghetti and sauce, some soft cooked vegetables. The nurse that night even cut up the spaghetti for me to make it easier to eat it, like you might do for a baby you were feeding. My coordination was so bad I could barely get some food to stay on my fork, and when I tried to get it to my mouth, much of it dripped down my chin. I felt like an infant drooling his baby food, like someone should have been spoonfeeding me, saying "And here's one for grandma!" I was so discouraged and had so little appetite that I only had a few bites and then laid back to get some sleep.

Also on the first day after surgery Dr. Nutik decided to remove a drain tube that he had installed. He'd told me before surgery that removing the tumor might not take care of my hydrocephaly, and the drain tube was there in case fluid still needed to drain over the first few days after surgery. But the day after surgery he said he was confident the surgery had taken care of that, and I wouldn't need the tube. (Dave later told me that after the surgery the day before, he'd come out of the operating room looking and sounding very smug and pleased with himself at what a good job he'd done with me.) He took off the bandages around my head and removed the tube (I don't know how, since it was all out of my range of vision). Then he told me he needed to seal it with a single stitch, and said there wasn't any point in anaesthetic because it would be one needle for me either way. I was frightened as he got ready to put in the suture, and steeled myself for the pain. But I guess the skull isn't a very sensitive place because I thought it felt no worse than getting a shot, and not one of the worst at that. So now I can brag that I once received a stitch without anaesthetic.

All through this, my blood pressure was very high and I was very tightly wound.

On the second day I would tense up every time I, say, moved my head, because I was anticipating the extreme pain -- and then I would realize after I did it that things didn't hurt as much as they had the day before. But I hadn't gotten any sleep for the second night in a row, and was very tired and very dizzy. I had even started having the sort of waking hallucinations you get sometimes from sleep deprivation. I'd be listening to a nurse and realize that the walls were crawling with ants or the doors were suddenly covered with graffiti.

I had brought earplugs because I'd heard it could be hard to sleep (and I'm a very light sleeper). But there was another issue, too. I had paralysis of the right side of the face, and as a result my right eye didn't close very tightly. (Still true now, in fact.) When I shut my eyes, light would leak in and make it hard to sleep. I asked for a towel to put over my eyes but it turned out the white towel was a perfect projection screen for the hallucinations. Later I asked Dave to see if he could find me a sleep mask and he brought one the next day.

What's more, whenever I forced myself to shut both eyes tightly to try and keep the light out, I immediately "saw" another hallucination; these were different every time, but they all were similar: some kind of image that was all dark brown, monochromatic -- for example, piles of what looked like coffee beans -- except for one little while spot, and the white spot would get bigger and bigger and closer and closer and it would be increasingly hard to keep my eyes closed that tightly. Finally I decided my mind was telling me it wanted the white screen for its own moving picture show. So I put the white towel over my eyes, let the light filter through, and just watched the hallucinations the rest of the night. I knew that this was not the same as sleep but maybe this was best, because at least it relaxed me and I felt somewhat refreshed the next morning. And I did the same thing the next night and that time I eventually feel asleep.

I remember one hallucination was thousands of Lonnie Prices wearing flowered hats, which gradually transformed into the field of flowering trees. Lots of weird stuff, very little that seemed to have any significance -- you know the way that sleeping dreams are often messages from your unconscious only filtered through symbols and metaphors and such? -- well, there was very little of that. It all seemed just random patterns, as senseless as looking through a kaleidoscope. The hallucinations just kept marching along, one transforming into the next. I felt like I was stepping back and watching passively while my mind flew on autopilot, as if I were in a fugue state.

They had removed my IV drip on the second day after the surgery because I was starting to eat solid foods, so I could get my nutrition that way now. That night a nurse came and took my blood pressure, which was 163. Twenty minutes later she came back and announced that she would have to put the IV drip back in me. My doctor had prescribed a particular medicine for me if my blood pressure went above 160., and that medicine could only be given via IV drip. I was pretty upset because those IV things really hurt going in and really hurt all over again going out and dammit if what she said about the medication was true then they sure shouldn't have taken the IV out in the first place.

So the nurse inserted an IV in a vein in the back of my left hand. Ow-ow-ow-ow-ow. But for some reason this didn't work. The needle had gone all the way through the vein or something. She said it was because my vein was too small, but sheesh, this was the same vein they took the IV out from this afternoon. So she pulled the needle out again. Ow-ow-ow-ow-ow. She said it would have to go in the vein on my right hand instead, and if that didn't work either, she would have to get someone to help her find someplace else to put it. What's more, she said, she still had to double-check the blood pressure, too.

Why?, I whimpered. If my blood pressure wasn't above 160 the second time, she replied, I wouldn't need the medication. Say what? Couldn't she check the blood pressure first, I asked timidly? That way she might not have to put in the IV at all. Oh, no, she replied. Even if my pressure wasn't over 160 she'd still have to put in an IV, because I might need it later. But I also might not, I pleaded.

Finally after a few back and forths she agreed with a weary sigh to my proposal. She took my blood pressure. It was 160 exactly. She was not happy about the defeat. "You can say goodbye to Belle now," she said to me, "but I'll be back before the end of my shift to check your pressure again. And if it's above 160, you'll have to get an IV." And sure enough she came back and checked my blood pressure a few hours later. And it was 145. Whew.

On the second day after surgery a physical therapist named Christina came by with a walker and got me started using that. The next day a doctor asked me if I'd taken any walks the previous day. "Three," I said, feeling kind of proud and hoping for a pat on the back. "Try to make it six today," he said blandly. "Really force yourself." I took seven. And spent almost the entire day either setting up at the edge of the bed, or sitting up in one of the room's two chairs, or walking. The difference of just a few days was overwhelming. The first day of surgery was a painful, interminable ordeal to be endured, but after that it soon became something that I could treat as an adventure to be pursued, a game that I was slowly winning, day by day. It became easier to forge ahead.

Yesterday morning they discharged me, and as my parents had no idea what to expect and because I live in an upstairs apartment, they had made reservations in two adjacent first-floor rooms in a hotel, mine with a handicapped bathroom. They were prepared for us to stay there for several days if it would help. I was skeptical about this and eager for the familiarity of home, but it turned out not a bad thing at all. Staying in a hotel feels to me like being pampered, so it was a lovely little vacation, a luxurious turnaround from the hospital I'd left that morning. And I got a hot shower there, which felt great. The showers in the hospital had all been lukewarm. The bathroom was wonderful, a great big room with a big shower that I could sit down in, but there were no towel racks next to the sink. Huh? I washed my hands and realized the towels were back across the room. Rather than go to the trouble of inching my way back across the room in my walker, I just wiped my hands on my pants.

(Later insertion: I should explain that until I could stand on my own, really the only way I could get clean was by sitting in the shower. A bathtub would have been too hard to step in or out of, and if I stood in the shower with my walker, I'd only have one hand to wash myself with while the other clutched the walker. One of the first things my father did when we got back home was buy me one of those inexpensive plastic patio chairs. In the mornings I would walk into the shower with my walker, and Dave would slide the chair in behind me so that I could ease myself into it. Sitting down, I could use both hands to wash, reach my lower legs and feet, pick up the soap when I dropped it, etc.)

My parents were pleased at how well I was doing so we checked out of the hotel room after one night. Now I'm back home today, and my father is staying with me while my mother has flown home. We'd all been led to think I was going to need a 24-hour watch for a while but things are nowhere near that bad.

Later: The tumor was 5 cm. Yikes. Back when it was thought to be 2.5 cm from the MRI, it was considered "large". I think I'm just as glad I didn't know exactly how large until after the surgery was over or I'd've been even more frightened and tense than I was. From what I've read, the size of the tumor doesn't make much difference in how easily the surgery may go, but of course the bigger the tumor the more brain it's displacing. Apparently a lot of the troubles here were caused not so much by the tumor itself, directly, as the hydrocephaly -- fluid on the brain -- that the tumor caused. (I think of it as the way your neighbor might re-landscape his back yard and put in a man-made hill and then when the next rain comes, all the water flows into your yard.) Dr. Nutik had told me before the surgery that he might need me to come back for a second surgery so that some kind of drainage tube could be put in that would allow fluid from the brain to drain into the stomach cavity or something. But now he thinks that's less likely. I'm going back in about six weeks for another MRI at which time I guess he'll see how things look.

The day after surgery Dr. Nutik was looking me over and said "I think I'll want to attach that tongue to the nerves, too, in about six months." I was confused by the comment and it didn't dawn on me until hours later that this was a bit of a neurosurgeon's joke. (Later: Oops, no, it wasn't. He told me later that if the paralysis on the right side of the face doesn't go away, he can attach a nerve from the tongue to the facial nerve, to regain the facial movement. I have trouble envisioning how I might use my tongue to move my face, but hopefully it won't come to that.)

17 December 1998

Recovery is easier than I'd expected. I still get around with a walker but more confidently every day. Getting up and down the front steps hasn't been an obstacle as long as I have someone with me. When we eat out, I'm more self-conscious about my appearance than my eating habits, which no longer involve half the meal ending up spilling down my chin like baby food. I got the unshaved part of my hair buzzed today so that it matches the shaved part. At the hospital they'd shaved part of my beard away for the surgery, so that I had a full beard on the left and sort of a goatee on the right, but of course that grows back in a little bit and gets a little less noticeable every day. My eating is a little sloppy yet but not very noticeable.

Today while we were out shopping for some necessities, I found I'd lost my entire bottle of pain pills. I remembered putting it in my backpack before I left home, but it wasn't there. Were they in my coat and fell out? We checked the restaurant where we'd had lunch. No pills. We checked the barbershop. No pills. We drove back home. No pills. For the tenth time, I searched my backpack, feeling kind of stupid and helpless as I went through the same pocket I'd already searched nine times.

This time the pill bottle appeared. Boy did I feel dumb.

Yesterday Dave put on a new CD for me to hear and I realized for the first time that I don't have my full range of hearing in the left ear. Well, I've been warned that the hearing can take a while to settle down after surgery. (I had the idea that I could have my new hearing aid ready when I came home, but it turns out that you can't, because they can't tailor the aid to your needs until your hearing has stabilized.) I guess this is what they were talking about. Or anyway, I'll have to see if it seems to be slowly getting back over the next few days.

21 December 1998

I got my stitches out today. The doctor who did it just grabbed the suture with forceps, used that to pull it gently away from the skin, and then snipped it and pulled it out. I've never had stitches before this and I didn't realize it was that simple. Took about ten minutes.

I was given three medications when I left the hospital. One was my pain pills. I only have a few left, but today I tried taking two Tylenol instead of a pain pill and that worked great. I was nervous about reaching the end of my pills but now it looks like that's okay.

The other two are over-the-counter medications, both for my right eye. I can't use the muscles on the right side of my face -- have I written about this? This is a common side effect of this kind of surgery because the tumor grows from a place where the facial nerve comes very close to another nerve. You have two facial nerves, one for each side of your face. Sometimes they have to sever and reattach the facial nerve on one side to get the tumor out, and it can take six months or so for the nerve to heal to where you can control those muscles again. In my case, they didn't have to actually sever the nerve (though it got badly scraped at), so I'm hoping that means the control will come sooner than that. My partner says he can already see a tiny bit more expression in that half of my face every day.

Anyway, the eyes. I can close my right eye only by closing both eyes together; I can't close it by itself. And it doesn't close very tightly. When my eyes blink, my left eye operates as usual but my right eye doesn't close very far. So blinking doesn't trigger the tear duct in the right eye, and if I don't resort to other ways, my eye will dry out, which not only blurs your vision, but takes away your eye's protection from things like dust particles that might land in it. Ordinarily you don't even notice when a speck of dust lands in your eye, and it'll get flushed out by the eye's own irrigation process. But when the tears don't flow and your eye gets dry, even a speck of dust could scratch it.

I have an ointment called Lacri-Lube for night, which I drop into the eye and then cover with a, well, it's sort of a clear plastic eyepatch with a foam rubber gasket, held to your face by a piece of elastic that goes around your head, like that on a child's birthday party mask. It keeps the moisture in the eye from evaporating. And then during the day I carry a bottle of those eyedrops that are formulated to be like real tears. I use that every hour or so. They also gave me another version of that eyepatch which is designed to clip on the inside of my glasses. It doesn't stay against the face as tightly but it slows down the evaporation and lets me go longer before I use the drops again. The clip-on eyepatch looks weird enough, though, that I don't know how much I'll wear it when I go shopping or dining out or anything in public. I may just keep using the artifical tears every hour. But when I'm spending the day at home working in front of the computer, that will let me go longer before I use the drops again.

One of the signs of this tumor was that I'd started having double vision, at first when I was particularly tired or dizzy, then later all the time. It turns out the tumor was pushing against the optic nerves or something. When I woke up in the recovery room after the surgery and opened my eyes, the first thing I saw was a clock hanging on the opposite wall, and I thought I must still be dreaming because a) the clock said seven o'clock and there was no way it could really be seven, either a.m. or p.m., because surgery started in midmorning, and b) I could see the clock with no double vision. I'd gotten a new pair of glasses in August to help me deal with the double vision while we tried to figure out what was causing it, and they had helped a lot, but I wasn't wearing them now. As I slowly realized I was actually awake, it dawned on me that the double vision must actually be gone, too. And it still is. It's maybe the most amazing thing of all to me that the double vision should have been so instantly corrected by the surgery.

My vision isn't completely stable yet though, and there's no point in my getting yet another pair of new glasses until it is. The eyes go slightly in and out of alignment with each other, apparently because the optic nerves are flopping about in the hole where the tumor was, and the rest of the brain hasn't yet settled back into place to hold them in place. Or something like that. But the vision settling down more every day so hopefully in won't be too long before I can get a new pair. In the meantime I've gone back to the pair I had before all this double vision stuff.

3 January 1999

I went down to stay with my parents for a week and a half, leaving a few days before Christmas and returning the day before New Year's.

I'd been recovering so quickly I was wondering if I'd even need to bring the walker down with me, as I was probably taking the train back if I was walking well enough, and didn't want another bulky thing to lug back. I decided not to risk leaving it behind as I still felt like I needed it the morning we left. But sure enough, the very day after my father and I drove down there, I gave up the walker and switched to my cane, which I'd also brought down. And the next day I tried walking without the cane as well. I've been flying solo since. I still feel somewhat unsteady, but that still seems to be lessening. I've been warned that I might never be as perfect in my equilibrium as I once was; in particular I'd probably always be unsteady in the dark now, because with my right inner ear no longer functioning, my brain relies more heavily on visual cues to keep balance than it used to. And it may be that some slight unsteadiness stays with me forever. But it's still lessening a tiny bit each day, and already slight enough that I can walk around town like I used to.

In fact, the Tuesday before New Year's, my partner and I went to Disneyland, and we spent 13 hours there altogether. We avoided any rides that would jostle me, because I found that mildly headache-inducing, but we did a lot of gentler rides and sit-down shows. Curiously, we did some rides with a lot of spinning, like the Roger Rabbit ride, and those didn't make me particularly dizzy. Spinning was all right as long as the motion was smooth. It was the bumps and jolts that gave me a headache.

When my father was up here staying with me, he kept wanting to do things for me, taking my arm to steady me when I hadn't asked him to, or taking my walker from me and folding it up and putting it aside when I'd been trying to do it myself. I assured him that I wanted to do it myself, that the only way I was going to get better was by doing all this stuff myself, that struggling through it was the only way to re-teach my brain so that these tasks would get easier the next time. I repeated it (in a loving tone of voice, I hope) a few times during the first day or two, and made sure that he saw I wasn't hesitating to ask for help when I did need it, and he did at last believe me. Then I arrived at my parents' house and it was the same thing all over again with my mother for the first day or two. People with permanent disabilities of course deal with this day in and day out their whole lives, and I can see vividly why you could get real testy about it real quick.

My right eye, the one on the paralyzed side, seems now to be producing some small amount of moisture, because I find myself needing the artificial tears less often during the day, and a couple times I've even felt a teardrop go down the right side of my nose when I hadn't used the eyedrops in a while at all. Another tiny sign of progress there, I guess.

A friend told me yesterday that the brain tumor that killed George Gershwin was also an acoustic neuroma. Great minds ail alike, I said to her. Gershwin and I were both 39 when we got our first symptoms, though in my case I had turned 40 by the time I was diagnosed and operated upon. [Later: Turns out this isn't true; it was a different kind of brain tumor that killed him. He collapsed and died fairly suddenly, just days after his first bad headaches, but with acoustic neuromas the symptoms begin mildly and only gradually worsen over a period of months or years.]

6 January 1999

Visited my optometrist today. I don't remember if I've mentioned this, but I had developed double vision this past summer, and investigating that was what really led me on the roundabout path to getting this correctly diagnosed at last. One of the first things I noticed after I woke up in the recovery room was that I wasn't seeing double, so the surgery corrected that right away.

We had trouble getting a prescription for the right eye because that's the eye on the paralyzed side, and the moisture often makes my vision blurry in that eye. My tear ducts are producing tears now, but I'm not blinking tightly enough with that eye still to spread the moisture all around the eyeball, so the drop just sits at the bottom of my eye until enough moisture has collected there to send a tear down the right side of my nose. So the right eye prescription might still have to be changed after my facial control comes back. Still, I need glasses even if the right lens ends up being replaced in a few months.

What was unexpectedly cool was that the optometrist says that, not only do I not need all the prisming (that is, correction for the double vision) I had in my current glasses, I need even less than I had in my pair before that one. In other words, I have less tendency toward double vision now than I had, say, five years ago before the tumor started messing with my eyes.

She also says there's a dry patch on my cornea, so I'll need to be even more diligent about keeping the eye moist. She gave me a sample of an eye lubricant called Celluvisc; it's said to last longer than the artificial tears I've been using. I tried it, liked it, and went and both a box of it at the drug store. [Later: I eventually settled on Tears Naturale II by Alcon as my favorite, but I carried about both and used the Celluvisc when I felt I could use a somewhat thicker drop.]

14 February 1999

I haven't added anything to this for a while, but there's really not too much to tell. Progress is steady, but much slower now. The first couple of weeks after the surgery, I could feel myself improving every day; now, I have to think back to where I was a week ago to sense the improvement.

Three main aftereffects of the surgery remain. One is that I'm still not as steady as I was before any of this started. But Dr. Nutik says I'll never be completely back to where I once was. As I understand it, my right ear no longer provides information to the brain about equilibrium, so my brain relies more heavily on information from my left ear and my vision. I'm now at the point where if I'm walking down the street looking straight ahead, I scarcely notice any difference from what used to be normal. If I turn my head and look to one side while I'm walking, I have a very slight feeling of unsteadiness, and when I turn my head back to the front I have a stronger feeling. I've noticed that this feeling is less if I turn my head more slowly. I've been deliberately not turning my head more slowly, though, in hopes that exposing my brain to these unsteadying situations will encourage it to learn how to deal with them. I have no idea if it matters, but what the heck.

I'd been told that I'd be less steady when I was tired and in the dark, but curiously, that hasn't been true so much lately. A few weeks ago I'd noticed that I was indeed less steady in the dark, and had to walk more slowly and concentrate more on what I was doing to get my feeling of balance. Now, though, I seem to do all right as long as there's any amount of light, however faint. If I get up now in the middle of the night, there's still the faint glow from the nearby street lamps and neon signs coming in between the slats of the window blinds, enough for me to make out faintly the outlines of my surroundings, and just that is enough for me to use that information to keep my balance.

The second aftereffect, of course, is the paralysis of the right side of my face. When I met with Dr. Nutik a week ago, he seemed a bit pessimistic about it going away; he said that the facial nerve on that side was thin and scraped by the time the surgery was done. But I'm more hopeful about that than he is, because so many people have told me that they can already see a tiny bit more animation in my face than a month or six weeks ago. I confess I can't see it myself when I look in the mirror. But Dave and others have said that they definitely see it, so I'm hopeful that this means that the nerve is indeed slowly healing.

The third aftereffect, and the most bothersome to me right now, is that I get occasional headaches. These are centered in the right rear part of my head, right where the surgery was. (My scalp is still a bit tender there, too.) The difficult part is that the headaches don't respond very well to painkillers. I can take an aspirin or an ibuprofen or a Tylenol and it's still 30 or 40 minutes, sometimes longer, before the ache lessens. A hot bath with a few drops of lavender or rosemary oil can help. (This is a good general help for headaches, by the way.) But sometimes all the aspirin and bath can do is reduce it to a dull, mild ache that still lasts half the day. When I compare this with a week or two ago, I can see that the headaches are gradually getting fewer and further apart; right now it's once or twice a week.

Actually, there might be a fourth effect, because I was very depressed for about two weeks -- last week of January, first week of February. And I've read where people who come through brain surgery and other critical health crises often get very depressed afterward. I don't know to what extent the surgery has to do with that; there are other factors in my life right now that I think contributed to that. Even apart from the brain surgery, I've taken some good hard blows in my life in the last year. And then there is the possibility looming of a fairly big break for me. Why would this get you depressed?, I can hear you ask in a scoffing tone of voice. Well, I've noticed in the past that this sort of thing tends to paralyze me emotionally. I'm afraid to get my hopes up for fear of being badly hurt and disappointed if the break doesn't materialize (and I have all too long a history of possible breaks not materializing), and yet I've learned that going on as if you couldn't care less can jinx a project, too. So I think that has a lot to do with my feeling so down. Maybe. When I find out for certain if this is going to happen, one way or the other, I'll feel emotionally freer, whichever way it comes out.

Anyway, I'm glad to say that I've roused myself. I have a lot to do, what with cleaning the apartment, and catching up with correspondence and friends, and sending more query letters to potential agents, and starting to make some inquiries about a new day job. (Because of the headaches, I'm leery about working full-time quite yet, but I might be working part-time soon, and I'm hoping that the way things are going, I'll be well enough to give myself to a full-time job around the end of the month.) And I have the libretto for the summer opera at Berkeley Opera to finish, and the vocal score to prepare. I try to go for a long walk every day, a few miles, and I'm starting to do some light exercise again. I'm gaining back some of the weight I lost during this long illness, though I hope I don't gain it all back as I was a little overweight before. But the first couple of weeks after surgery I was definitely looking underweight. For a while I was letting myself eat more rich food than I usually do, but I like the weight I'm at right now, so I'm back to eating healthy to try to maintain that.

14 June 1999

Since my last entry, the law of diminishing returns has become the law of the land. The paralysis in the right side of my face has not yet gone away, and change is so slow that I don't see any improvement from day to day or even week to week. But friends who see me after a month all tell me they can definitely see improvement. One friend told me that two or three months ago it was as if there was a line down the middle of my face dividing the half that moved from the half that didn't, but that now he could see the line had crept an inch or so to the right.

I've noticed my diction is improved over a few months ago. I sang in the Berkeley Opera chorus a couple months ago and I thought my diction was passable but still impaired; now I feel like the impairment is much less.

The headaches disappeared for about a month. Now they're back. I'm pretty sure that what's causing this is a combination of my head still being tender and sensitive around where the incision was, and all the pollen in the air this season. It's been a bad year for pollen, and the same days I wake up with bad headaches are the same days that others are reporting allergy problems. I battle them with ibuprofen and a cup of coffee and that works. I'm also taking antihistimines and that helps, too.

I was having some major mood swings for a while. One day I'd be in good spirits, and the next I'd be terribly depressed. Little things would go wrong and send me into despair. My computer would crash and I'd be in tears. I mentioned it to Dr. Seegers (my regular doctor) and he said that he wasn't surprised I was having the swings, given all I'd gone through, and that if they persisted he'd prescribe me some antidepressants. But as I seemed to be getting better, he'd just as soon not have me taking any drugs that affected my brain chemistry right now. Makes sense, I guess.

A doctor friend of mine told me he thought I was probably having "post-traumatic stress", which is apparently a common enough reaction. As I understand it, it has a lot to do with the fact that I was in crisis mode for several months. As with any chemically-induced high, when adrenaline stops flowing, you crash. And when the adrenaline has been flowing for months, when you crash, you crash hard.

And my possible Big Break did not materialize. That sent me into a black funk for a few weeks, too.

Anyway, I can watch myself now growing more steady and stable emotionally from week to week. And without going into details, I'll just mention that my sex drive had been swinging as wildly as my moods, but it too seems to be settling into more normal patterns.

I was overly optimistic to think I'd be back at full-time work months ago. I'm still not. In February I thought that if my recovery continued to progress at the rate it had been, I'd be over my headaches soon. Not so: In early April, I was still getting splitting headaches once or twice a week, and there was nothing to do but lie down until they went away. I didn't see any point in looking for a job when I'd be calling in sick a day or two each week, and the headaches seemed a pretty clear sign that I wasn't really well yet and needed more recovery time.

When the headaches finally stopped in late April, I figured I'd put off looking for work for just another two weeks, so that I could work full-time getting my libretto for The Tales of Hoffmann written, as I was close to finishing and was late with it. After the libretto was done, I started looking for work, but in mid-May the headaches started again. Now at least they respond to an ibuprofen and a cup of coffee. Still, I find myself thinking maybe it was just as well not to have had to rush back into full-time work. It's very nice to be able to take it easy in the mornings, as I wake up nearly half the time with a splitting headache. I'm still job hunting, I spend three or four hours a day at it, and I'm impatient to get the cashflow flowing again. But I'm trying to balance that impatience with some faith that if I haven't found something yet, maybe it's because in the Grand Cosmic Scheme of Things my recuperation is simply meant to go on a bit longer yet.

If I find my next job at the same time the damn pollen finally goes away, the timing will be ideal.

A couple of things have been very encouraging. For a while now, I've noticed that the hearing in my left ear is getting very sharp, sharper I think than when I had normal hearing in both ears. My doctor says this is common, that the good ear is compensating for the loss of hearing in the other.

And just this last month my equilibrium has improved to the point where I'm only very occasionally conscious of it being less than normal. Dr. Nutik, my neurosurgeon, has warned me that my equilibrium will never again be as good as it once was. But this past month it's gotten very close indeed. Earlier this year, for example, if I turned my head to one side while I continued walking (say, looking at a shop window as I passed without stopping), and then turned it back to the front, I would get a little dizzy and maybe stagger just a bit. I don't do that now. I hardly notice any trouble keeping my balance even in total darkness. This makes me very happy: the thought of spending the rest of my life a little bit dizzy was not encouraging.

And people continue to tell me how much more alert and present I am now than I was for just about all of 1998, or even as early as mid-1997. A friend of mine, who I only really started getting to know after the symptoms first started, told me last week that she felt like she was getting to know me now for the first time. Others have said similar things.

25 August 1999

It's been over two months since my last entry. The roller coaster ride continues, though the peaks and valleys slowly become less extreme as time passes.

On the plus side, about two months ago I began to see some very slow but visible improvement in the right side of my face. I'd been told that it takes about six months for the facial nerve to heal, and the progress seems to have started, sure enough, about six and a half months after the surgery.

Progress is very slow. Two months ago the right side of my facial visibly sagged; now it no longer sags, and when my face is at rest, there's no noticeable difference between the sides of the face. However, I still can't do much with the right side of my face. It's especially noticeable if I lift my eyebrows -- only the left one goes up -- or if I smile broadly -- only the left side of my mouth smiles. (A small smile, though, now just looks rakishly crooked.) And you can see little muscle movements in the right side of my face -- nothing major, just little movements when I smile or make faces. This is encouraging. I'm resigned to healing being a very slow process, but it's nice to be able to see it actually happening.

The headaches, however, continue. Sometimes I go for a week or more without any major headaches, and I think maybe this is the end of it. Then I have a week or so of splitting headaches every day.

The headaches get me down more than anything else. Sometimes they respond to drugs -- I've gotten into the habit of taking an antihistimine along with my ibuprofen whenever I'm fighting a headache, and that seems to help. If that doesn't work, sometimes a cup of coffee or two will help. But sometimes (like today) the headache doesn't go away, only dulls a bit, and there's nothing to do but live with it as best as I can. They aren't the worst headaches I've ever had, but they're no fun, and when I'm getting them every damn day, they are wearing.

The worst ones still seem to coincide more often than not with the days other people I know complain of headaches, so I continue to think it's likely some hypersensitivity to the pollen in the air.

My mood still swings a bit, though not as often or as violently as it was swinging a few months ago. I thank God daily for my partner Dave, who has stuck with me through so much already, and still is here to talk things out with when I'm feeling frustrated and down. It's a great help. One good thing coming out of all this awfulness is that our relationship is much stronger for having weathered this.

Another mood-enhancer was that The Tales of Hoffmann went quite well, and my libretto was very well-received. There were four reviews that I know about, and all four were raves. After the show closed, I felt rather lost for a while, but that's a familiar feeling to me -- it's the sadness that comes from seeing a project finishing up when I'm not yet clear on what the next one will be. But now my next writing projects are starting to identify themselves, and I've got a sense of direction again. For me, my moods are always linked to how well the writing is going, and for me there's no upper as potent as being wrapped up in a project that's going well. I've now got preliminary sketches for a new opera libretto, an English-language adaptation of a worthy but neglected 19th-century opera, and a new spoken play -- a satirical comedy. So even if one or two of these end up being tabled for the time being, I'm know I'll have something to work on in the coming months.

27 May 2000

Nine months since my last entry.

The healing continues, but very slowly. I have to look back where I was two or three months ago to see that I'm still improving. Friends who haven't seen me in a couple months always say that they definitely see the improvement in my face, but I see it every day and it's hard to tell that anything's changing. I can see that the movement is there more than it was a month or two ago, but from day to day and week to week it looks like nothing is changing. Which is discouraging.

But not out of the ordinary, apparently. I continue to learn more about this and read other people's stories, and I find that it's not unusual for the healing process to continue for up to two years. The way things are going, I expect in time to get full use of my facial muscles back -- in fact, a full recovery except that my equilibrium will never be quite what it was (but already it's quite good, I only even notice the small loss in equilibrium every once in a while), and of course I'll never get my hearing back in my right ear, barring some wonderful medical breakthrough in my lifetime.

There are several aftereffects of the surgery that still linger.

The hearing loss. That's permanent, of course, and I've adjusted quite well to it. Now and then I'm inconvenienced by the fact that I can't really tell what direction sounds are coming from, but not often. The most nerve-racking thing is hearing a siren and not being able to tell at once what direction it's coming from. If I'm walking down the street with Dave and we hear a siren, I just won't cross a street until I see where it's coming from. Dave just crosses the street, because he can hear the siren isn't coming this way, and then he wonders why I refuse to budge from the sidewalk. But mostly this has been much, much less of a problem than I thought it would be.

The right side of my face is still somewhat paralyzed. But it gets better, and it's not terribly noticeable any more. The muscle tone is back, at least, so nothing is actually sagging. There are now small movements around the eyebrow and checkbone when I smile or try to raise my eyebrows. I'm not horribly self-conscious about my looks any more. In fact, I emceed a Berkeley Opera concert a couple months ago and I'm told that from the audience, you couldn't tell there was anything unusual about my face at all. And it looks like all the muscle movement will come back in time.

The headaches. This is maybe the most frustrating part. Part of it is undoubtedly due to stress. I've been under horrible stress -- I was unable to work for many months after the surgery, and then in September, when I started looking for full-time work again, it took a very long time before I found something permanent to settle into. A few temporary jobs, one of which looked like it was going to become permanent and then didn't. A few false alarms -- one company told me I had been chosen for a position as senior copy editor ... then told me I needed to wait until the new editorial director had started ... then told me I needed to come in for another round of interviews ... then told me I had been chosen (!) ... then told me it would be another week before they would decide (!!) ... then told me I had been chosen (for the third time!!!) and the offer would be made the next day ... then the next day they told me that some higher-up had decided they weren't ready to start up the copy editing staff yet. I very much wanted that job -- it was a dot-com start-up, and paid well, and best of all the job was about two miles from my house, so the commute would be very easy -- a bus ride or a bike ride or a half hour's walk. But it turned out to be a big, big waste of my time. This was the most frustrating of the false alarms but not the only one by any means. Given the extraordinary demand for any kind of writing and editing talent in the dot-com world, I thought I'd have something in no time. So it was deeply frustrating that it took me so long to settle into a permanent position, and deeply stressful to be subsisting on such a tiny amount of money for so long.

Oh, and that wasn't even the worst of it. In September we got evicted from our apartment -- the building was sold and the new owner wanted our unit. At the time we had to move, I had next to no money, and was still not recovered enough to be able to carry boxes down the stairs from our old apartment. I could climb up and down stairs by that time, or I could carry a box, but I couldn't do both at the same time (unless the box was small and light enough to carry with one hand, so that the other could hold the handrail). We had an odd assembly line going at one point: I would carry the heavy boxes from the apartment to the top of the stairs, another friend did nothing but climb up and down the stairs, bringing another box down with every circuit, and a third friend took them from the bottom of the stairs to the truck. It felt very silly, but that's the only way I could have assisted in my own move at all, and it didn't seem right that I shouldn't be helping as I could.

What's more, I had just started a new full-time (but, as it turned out, temporary) position with a very long commute. I am amazed that we managed the move at all -- we owe a huge debt of gratitude to many, many friends who gave and lent us money for the move-in costs, and who helped us pack and move all the boxes. As it was, it took us three weekends, and that whole time is now a big blur in my memory.

So the stress has been severe, and the headaches were severe. I have landed in a very nice job as copy editor for a dot-com -- it's the lowest editorial position I've held in over 15 years, and yet it's also easily the best paying. It doesn't entail a lot of personal responsibility but that suits me fine right now. I know I could probably be making more money in a more managerial position. Maybe in six months or a year I'll feel ready to move upward. There's such a shortage of editors in the dot-com world now that anyone with just a little dot-com experience is very desirable. We'll see. Right now this is a fine place for me to catch my breath and think things through and retrench.

Since I've been employed, by the way, the headaches have been much less severe. Not gone -- I still have at least one mild headache most days, either first thing in the morning or in midafternoon. But generally I take an acetaminophen and it goes away.

The final thing that's been afflicting me is on-and-off depression. The mood swings have been going on since the surgery, of course, but in the last five or six months it seems like the bouts of depression have been going on longer and with less time between them. I've felt more and more like the headaches and the money troubles and everything have increasingly isolated me from other people.

One thing that has been very discouraging is realizing that no one wants to hear that I'm not yet back to my old self. It's as if they want a quick happy ending to this story so much that they just don't hear anything they don't want to hear.

Friend: So how are you doing? All recovered from the surgery, I see!

Me: Well, no, my face isn't all back yet, and I still get very bad headaches now and then, like once a week.

Friend: That's great! So you're all better now!

After a while I just stopped talking about it with anyone. But when struggling with this stuff is your whole life, all day every day, and you feel like it's a taboo subject with everyone, you start to feel more and more disconnected from the rest of the world, like you're living in a slightly different plane of reality from everyone else, and the two planes are slowly becoming more and more out of synch with each other -- I've felt like I was becoming more and more a ghost in the world, walking through it with everyone only half seeing me, half not seeing me, and without my having much effect on anything. It was only a matter of time before the two planes broke apart altogether and I'd become completely invisible in everyone else's world, and perhaps everyone else would become completely invisible in mine.

There have also been a great many disappointments. The job hunt as I've said was hugely discouraging -- over and over again it looked like the hunt was over, and then I'd have to start again. And The Riot Grrrl on Mars was being considered for an off-Broadway production and then that didn't happen, the producer backed out of it. I found a composer who both was enthusiastic about setting my libretto for Serpentina and has a personal style that would be wonderfully right for it -- but he's been so busy with other (and better-paying) work that now I don't think he's ever going to get around to it, and so I'm back yet again to square one, looking for the right composer. Serpentina is maybe the best thing I've written, and it's frustrating not to see it moving forward.

All in all, it's just seemed for a long time as if any time I allowed myself to feel happy about anything, I would get kicked in the butt for it before long. I don't think this depression is primarily a result of the surgery, but in my more-fragile-than-usual physical and emotional state, I don't seem to be able to handle the ups and downs with the kind of equanimity and stamina I used to.

But I'm hoping this will improve. Having a good job and a good income again is already making a difference in things. Just being able to catch up on all the bills at once for a change is a great weight off my mind. Hopefully as I get my life more and more back under control, pay off some of the debts I've built up, buy some things I need and have had to do without for so long -- all that good stuff -- my sense of emotional equilibrium will continue to increase.

I sure hope so, anyway. This has been one hell of a long haul. I really need some time for life just to plod along with a normal daily routine for a while, you know?

20 February 2001

It's now two years and two months since the surgery. Here's the progress report.

On just about every front, the progress is still slow and still not over yet. Over two years, and I'm still seeing improvements! I mean, this is good, because there is still improvement to be made, but of course it's also frustrating because I thought this train was supposed to have arrived at its destination by now.

The headaches: Still happen now and then. I take an acetaminophen or two on maybe half of my days, but most of those are more as a prophylactic -- I can often sense that a headache is coming on, I get a hard-to-describe feeling of tension and uneasiness that I know from experience means "headache coming", but I also know that it's maybe 15 minutes away and if I take the pill right away it'll never actually settle. I worry sometimes that this may be partly neurotic habit or hypochondriasis, too, but hey, it's not like it was Valium or something.

I can see now, too, that the headaches are often related to two things: stress, and changes in the weather. Not all of my headaches are due to one or the other, but somehow my body now often responds to those with a headache, and it didn't before the illness.

Like everything else, I can see that this is still improving slowly if I compare it with where I was a couple months ago. Also, the headaches are much less frequent when I'm employed than when I'm job hunting -- no doubt because of that stress connection. Have I mentioned that I keep bouncing in and out of jobs? Welcome to the new economy: There are still lots of openings but the companies keep tanking. Between jobs the frequency of the headaches is rather higher. So we're talking a stress connection.

The face: Still slowly but steadily improving, and still not all back yet. After two years! However, things are close enough to normal now that you can't even tell there's anything wrong unless you know what to look for. The progress seems to be faster on the lower part of the face than the higher. My smile is now pretty close to symmetrical, just crooked enough to look a little rakish. The muscles around my right eye are still not as strong as the ones around the left, but it's not noticeable to anyone looking at me. They've been strong enough for some time that I'm blinking fairly normally, and while I still carry around my drops and use them now and then, it's a matter of once or twice a week -- a long way from once or twice an hour, which is how it was two years ago! My right eyebrow still doesn't go up, but when I make an expression with my brows it doesn't look paralyzed, it just looks like I'm raising only one eyebrow -- which I'd always wanted to do anyway. If you look very closely, you now can see tiny eyebrow muscles twitching -- they weren't doing that before.

So all in all nothing that's hard to deal with. And I still see slow improvement when I compare it with where I was a couple months ago, so hopefully that's going to continue. (As far as I know there's no reason why the eyebrow won't eventually come back as the rest of the face is -- it's just the damage to the one facial nerve that's causing the paralysis, so if the nerve is healing for the lower half of the face it must be healing for the upper half, too, no? I hope so anyway.)

The equilibrium: It's great, better than I had ever expected it would get. I'd been warned it would never be as good as it once was, and it's true that I do still get fleeting moments of slight unsteadiness -- but that's it, and it's never enough to be a problem. I've been driving again -- a little timidly at first, but I got re-used to it pretty quickly and soon was having no trouble at all, just like old times. I even drove Dave and me to Reno and back over Christmas weekend -- no problem.

So maybe my equilibrium will never be back to 100% of where it was, but heck, it's now somewhere around 99%. I can deal with that just fine.

The mood swings: I still get them sometimes, but they're a lot milder than before. Others have told me they've noticed a change in me, too, that I'm more confident and upbeat than I was for a long time after the operation.

All in all, I'd say I'm somewhere around 90% - 95% of normal, and it seems that I'm still creeping upward there.

• Juggling in Handcuffs
• About David Scott Marley
• Opera and operetta adaptations
• Features and interviews
• Other stuff
  • The Bible Tells Me So
  • Books and Plays That Changed My Life
  • Books and Plays That Didn't Change My Life but Which I Like Very Very Much Anyway
  • DuncanCam!
  • My Brain Surgery Diary
  • Small Talk: A Parlor Game
  • Small Talk: Preparing the Cards
  • Two Bibliographies

Scratchings

• Juggling in Handcuffs > 
• Other stuff > 
• My Brain Surgery Diary >