Fine Young Fauves

I'm now up and running with my new treatment protocol, vestibular therapy. Indeed, I'm going against much of it right now by sitting in a non-ergonomic manner and keying this… apparently my neck has more than a minor role in the whole dizziness/balance mess. And as others have attacked my ears with jets of water, my eyes with blindness goggles and hectic little red lights, I now have another crowd who are going after my neck with a vengeance. 

My first visit out there to see my new BFF Vince in Wadsworth, they (Vince and one of many assistants) put me through the paces to see just how piss-poor I am at balancing. Turns out I can stand with my feet heel to toe and my arms folded, eyes closed, for something like a whopping 5-6 seconds before toppling over sideways. I think this is pretty bad. (Try it yourself and see how you do, but do it next to a bed or something in case you fall.) Also, they kept making me sit in a chair and turn my head extremely far to the right. Then they had me wrap a hand towel around my shoulders like a cape, and use one end of it to pull my chin and cheek even more insanely far to the right. Never the left! They were very stern on this point. I also got yelled at one time for bending my head way forward, as all the far-right stuff was making my neck sore. They pretty much screamed and dove at me to make me stop. 

They gave me a series of exercises to do at home twice a day– the towels, ten times, a thing where you roll up the same towel and put it under your neck while you down and tuck your chin in way too far, repeatedly; ankle exercises with a giant rubber band; and walking up and down the hall, heel to toe, while touching my finger to the wall. Right now I only do that one forwards, with my eyes open, and it makes me very dizzy. But when I get good at it, I'm supposed to add doing it backwards, and then I guess the PhD level is doing it forwards and backwards with your eyes closed. I'm a long way from there. lord knows. Now after a couple visits, they discovered this little spot behind my right ear that if rubbed will make me dizzy. So– you guessed it– I'm supposed to rub it! I think sometimes they missed the memo that I really, really don't LIKE being dizzy. 

Among the strange neck things they have done is taping it. I mean, just applying medical tape to my neck, following the neck muscles down the front to my collar bone and then horizontally all down the back of my neck from my hairline to my collar. When I first asked for an explanation, the young lady taping me said (erroneously) it was diagnostic– to see if it would make me dizzy. I was supposed to wear it for 24 hours (please note: it was not flattering nor comfortable). I thought, all in all, it would be easier and take less time if we focussed on the things that do NOT make me dizzy, rather than those that do. But I didn't make a fuss. I wore the stupid tape, which felt unpleasant in many ways, the rest of that evening and all the next day. It did make me dizzy, and seemed like a lot to deal with on top of normal life (which makes me dizzy). 

The day after that, I went in to see them again, and they seemed depressed and hurt that I did not like the tape. Vince said, "Well, let's give it another try. Maybe it will help– you've got to give it a chance!" I of course am game for whatever may help, but this really puzzled me. I asked another young lady, a new one taping my neck, what the deal was with it. She explained, "Well, there are a lot of [unintelligible]s in your neck, and we've found that if you stimulate the [unintelligible]s, sometimes it helps RELIEVE your dizziness. It gives your neck a better sense of where you are in space" 

I said, "What is that WORD that everyone keeps saying?" It really was driving me crazy. Something receptors?

She said, "Proprioceptors … they are in all your joints and they help you orient yourself in space. Your neck is full of them, so the tape helps them stay grounded in space, and often can help you balance."

Okay…  I submitted to the tape again, and this time… well. I noticed towards the end of the day a strange sense of security provided by the tape. It felt comforting somehow. I'm not sure if it was all a placebo effect, but I did sort of grow fond of it. Still, when my 24 hours were up I peeled it right off. And this time, unfortunately, I had a bad reaction to it– to the glue or the tape I don't know. But in any case my neck got some big puffy hives on it, and those turned into blisters which then burst. I got the creepy crawlies all over my back and head and had to take a benadryl to make it stop. Now I look like a vampire has bitten me… oh well! So lovely! I'm seeing an allergist in a couple weeks and I'll mention it. Soon I will be just one walking ball of afflictions. 

Anyway, after making me stand on wobbling boards and twist my neck all over the place and making me ill with these horrible shoe-like things that have rocker bottoms, they decided to really attack my neck big time. No more pussy-footing around. They covered it with goo and slapped on these little fabric pads attached to ominous-looking wires. Then they wrapped the whole mess in a huge freezing cold neck brace type thing. Once I was laying down like this, the lady began to turn a knob that caused my neck to be repeatedly and persistently electrocuted. She said, "We want it strong but not painful." I allowed that it was strong but not painful, although really it was just inside the line. She put a washcloth over my eyes and said, "Just pretend you're at the spa." And we chuckled about that. I had plenty of time to think it over, as I had to lie there having my neck simultaneously frozen and electrocuted for a full 20 minutes. 

Afterwards I had to sit still for a while to get the dizziness under control in order to drive home. I have heard from my peeps in the Dizzy Lounge that vestibular therapy makes you feels worse before it makes you feel better, but that it's really very worth doing. So I'm hanging in there. I'm doing all my homework and trying to get an A. The next two weeks, though, the schedule is nearly impossible– the kids have crazy schedules at school as they phase in to their new classes (we started today and all went well), all the babysitters I had over the summer are back in school, and of course there's the schedule of the therapy place itself, which is packed. So between it all I may not get back to the spa until after Labor Day. Vince is prepared for that. Although it stands to reason that not going as much as I'm supposed to be going will drag the whole thing out longer. 

I do like the idea of, okay, my inner ear is injured and will take time to heal. But meanwhile there are other parts of the balancing process that we can actually improve, thus making my overall experience of balance and dizziness less of a major problem. Is it working? Maybe. Now and then I have a moment where I expect to be dizzy– like walking up a slope in the yard last night at sunset– and I find myself thinking, "hey.. I'm NOT dizzy!" Then it passes. But, still, this is a step in the right direction, it really is. 

Elias dropped a major rock on his toe this morning.

Last night Ben managed to catch a garter snake, and we had him in a cage (the snake, not Ben). We were looking around for things to feed him. It's been really dry so worms were hard to come by. I found one fat slug, and then I started to try to find crickets. One major place to score crickets is under these big flat rocks we have on the terrace. I lifted one up, and wow– tons of big robust crickets! I caught one, set the rock down, and turned my back to put the cricket in with his new friend the snake. While I was doing this, Elias chose to try the same move. Except he was not strong enough to hold the rock for long. Apparently it slipped out of his hands and landed right on his left big toe (he was barefoot). He screamed instantly, and just from his tone I knew it was not a normal boo-boo.

I snatched him up and rushed him into the triage unit in the downstairs bathroom. Blood was gushing out. I put it under running water and determined immediately that it was beyond the scope of Spiderman band-aids. I told Isaac to get his shoes on, STAT, found my wallet and my phone. I needed many hands to do this while also gently cradling the patient and keeping his foot wrapped in a bloody onesie. 

The new wonderful emergency room, the construction of which I've been eagerly watching for months, opened on August 1st! That means that instead of driving 25 minutes into Akron to the big, old, crowded yucky one downtown, I can now drive five minutes to the sparkling, new empty one with a pediatric unit on site. So happy!  And now, during all the years to come of raising these… slightly accident-prone boys… I have this resource at my fingertips!

Can you imagine? The doctor who saw us today was the same one who helped Elias when he drank the Benadryl a while back. When he came in, I said, "Oh! Dr. Gupta! We've met. This is the little guy who drank the Benadryl." And he said, "Oh, hi Elias. " Old pals! He examined the situation and ordered x-rays, while another lady came in with some Tylenol with Codeine and two popsicles. Soon Elias was glassy eyed, not crying, and watching Word World on PBS kids. The x-ray process was not all that fun. Elias just couldn't accept that the huge monster looming over him was merely a camera. But it was not broken. That's the main thing. 

So they just cleaned it off and wrapped it in a huge amount of gauze. He's supposed to stay off it for at least 24 hours and then soak it twice a day until it's all healed up. He'll need a Band-aid on it until it doesn't hurt anymore. The whole thing will be some months to lose the nail and gain the new one, and I expect he'll be hobbled by it for a few days.

Poor little lamb. He's conked, with his huge blue foot on a pillow. Oh well! At least we were saved from having a dull, normal day of recuperation after my trip!  

I got my MRI results yesterday. My results are…. drum roll…. "normal study." This means that I don't have a brain tumor, or aneurism, or some other ungodly thing in there that I didn't know about. What I have is a normal brain (pretty much) and normal internal auditory canals. I'm glad and relieved that I don't have something yet worse (e.g., brain cancer) than what I think I have at the moment. However, I found myself slightly … deflated… disappointed that there isn't more information. Like, for instance, an answer as to exactly WHY am I so dizzy? Especially after the ordeal with the contrast. I had hoped that they would actually be able to see something like, hey, there's a lesion on your balance nerve, or there IS too much fluid in your semi-circular canals, or yeah, your labyrinth is all messed up. Something, something that would confirm or deny the theories before us. But no. When I spoke on the phone with the nurse, I was poised with my pen to write a whole bunch of notes. "It's normal study," she said. I wrote that down and waited. Nothing. "That's it." So I explained my view, and she seemed sort of miffed. "Well, are you still having vertigo now?" she asked. Sort of like, we saw you a week ago, aren't you better yet? And I said, "Yes, I had to take antivert this morning." She asked whether I went to my new vestibular therapist (yes), whether I stopped the dyazide (yes), and when my follow-up appt is with Dr. White. (Three months away, in November.) So, finally she said she would talk to the dr some more and call me. But clearly this threw her off her game. "Normal study," she felt, was enough.

I'm back and more or less in one piece after what may have been the briefest and most intense, physically and emotionally demanding trip I've ever taken.

First off, the weeks leading up to it were intense. Will I go? Can I go? How can I go? Will I have a vertigo attack that day? Will I fly? Can I fly? Will Ben drive me? Where will we stay? How can we do this? And so on and so forth, with lots of it's on, no it's off. I can, no I can't. Back and forth up to the very last minute. I was all primed to fly on Friday when our babysitter bagged out, which meant that I couldn't fly after all, because there would be no one to take care of the kids while I was on a plane and Ben was in a conference. So at that point, I waved the white flag, said I give up. I can't go. It's one barrier too many. I'm too sick. I'm too scared. And I just can't get the fucking thing to work.

However, Ben, who was on the emotional roller coaster with me, persuaded me to try one more angle. Change my flight and fly on Saturday. He convinced me that if I didn't go I would regret it, feel paralyzed by my condition, feel horribly left out, and not get the support and connection I need with my old friends who are also struggling with the guilt and grief of having a friend kill himself. I DID need to go. That much is true. That's why I kept trying to go against all logic. I needed to go. I needed to meet everyone on the steps of Low Library at 5:00 on Sunday August 16th. So I went.

I arranged for wheelchairs at all possible points, in case I was incapacitated by dizziness at that particular moment. My prime number one fear was getting off the plane in New York. I couldn't estimate how the flight itself would affect me, and the idea of being too ill to stand, with people swarming around me, all by myself, carrying a bag, was really quite terrifying. I figured that at least if I had a wheelchair I could make it to a cab. And once in a cab, i could make it to Ben's sister Kate's house. And once there, I could collapse.  

I was doing all right when Ben dropped me off at the airport. The security lady in Akron (I shouldn't reveal this) let me through with 3.5 oz of deodorant, when the limit was 3.4. (Likely I could make a bomb out of the extra .10 oz!) No one cared about my — hello– metal cane! I got through security without getting too dizzy, but then I had to stand on this loathesome jetway for some eternity, in the heat, being jiggled, such that when I got to my seat I was kind of ill. When I noticed that I couldn't bear the little curtain wafting in the breeze in front of me, I decided that I was in no shape to be in plane about to take off. But I was prepared: I snapped off a tiny fragment of my powerful antivert pill (I can only take half if I want to remain conscious), and popped in my air-pressure regulating ear plugs. (My peeps in the Dizzy Lounge told me to do this.) And it was fine. I listened to a podcast. The flight is only one hour. The weather was fine, no bumps. I landed and walked off the plane under my own power, waved off the lady with the wheelchair. The cab ride to Kate's house was also amazingly routine. I felt a little weird, being on drugs and all, but it was okay.

The next morning I headed to my friend Colin's house, where I got to spend time with my old Vassar friends. Colin and his Iman-like beautiful wife Donna have stunning little dumpling baby called Inigo (like Indigo, without the D), who is by far the fattest most toothless and grinning little pumpkin you'd ever want to meet. My old friend Amy was also there, with her little beautiful toddler Sebastian. Upon greeting me, she said, "I should warn you that my child is likely to tell you to 'go away' or possibly even 'go away down the drain!'" I said, "Well, if my child were here he'd probably tell you 'I'm gonna punch you in the face!' or call you "You dummy'" (Indeed, Elias is on a role with these remarks, and won't stop staying this to everyone and thing 24/7. "I'm gonna punch that house in that face!" "I'm gonna punch that mosquito in the face!" ad nauseum.) Donna touched and flattered me no end, by telling me that she's read my entire blog!! All six years of it!! "I laughed and I cried!" she said. Really, this is the best review I've ever had and will probably ever have in my life. She has to be my most devoted fan. I think it runs to 300-400 pages by now!  And retention? She knew my new doctor's name.

Anyway, we had a lovely afternoon hanging out and talking and catching up after not having seen each other for a year or so. However, as the time to go to Columbia approached, I began to feel dizzy. When my friend Laura arrived (meeting me to take a cab up to Columbia together), I had to take another half an antivert. This took a while to kick in. I realized that I had been talking, interacting, in a visually stimulating world for hours on end with no break, and that it was coming up to time to go and I was too dizzy. I went into the bedroom and tried to calm down. However, I was not calm. I was panicked. I tried to slow my breathing. But the pictures, damn them, started moving slowly across the yellow walls. The dresser knobs began to vibrate, then dance. The bed rocked side to side. And all the while I was thinking, NO. Just NO. Don't do this now. I need to be on the steps of Low Library at 5:00 and it's now 4:15 and I have come this far and I can't let this happen. The internal struggle of "I must get there after coming all this way." vs. "I can't tolerate a still quiet room… how can I ride all the way from the East Village to the Upper West Side in a yellow cab?" was agonizing. 

But I think the antivert took hold at that point. I got myself sitting up. Soon I managed to walk into the other room, where my concerned friends were all waiting for me. Shortly I burst into tears and had a brief nervous break-down. Part of it, I think, was the Andrew thing itself. Why did Andrew kill himself? How come he had to die? All that was washing over me intensely at the same time as the dread of lying on the pavement in the middle of New York was also quite intense. 

My friend Laura talked me down. "What's the worst that could happen?" she asked. "That I would throw up in the cab," I replied. "Okay, let's plan for that." Colin and Donna bustled around, getting me big ziplock bags, Kleenex, and baby wipes. Thus armored, Laura and I proceeded out into the bright, sweltering, busy city. Laura delicately implied– with the utmost tact and gentleness– that it was inconsiderate to lose hold of myself like that, and so I made sure not to anymore– even though the cab we got was surely the worst in New York. I mean, they all drive like maniacs, that's a given. But this one, and in my condition, was clearly especially bad. The swerving! The lurching! The slamming on of brakes! After one especially chilling near miss, Laura began to badger the driver. She made him drink water. She kept her eye on him the whole rest of the drive. I couldn't see this from where I was sitting, thank god, but later she told me that he was literally punching himself in the face!! to stay awake. I asked whether he was drunk, and she said that he looked to have stayed up all night drinking and was now just exhausted. 

So. On that note, I arrived there– there at Columbia. So lovely there. I could walk,  although sturdily braced on Laura's slim arm. We found our friends up on the plaza area in front of Dodge Hall– where some 15 years ago we all spent many, many happy, sad, frustrating, rewarding, challenging hours analyzing each other's writing. People kept showing up, hugging, exclaiming over each other. The roster: Laura, Helene, me, Jerome, Jim Gould, Andrew's old girlfriend Sara, Read & Jennie and their 9ish son Lake, Jim S., and Jodi. Trying to get 10 MFAs to make a plan in an interesting process, but shortly we made our way to an Ethiopian restaurant about ten blocks down. I had a big studly escort in Jim Gould, who carried my bag for me and let me hold on to his arm as we made our way across the plaza. After walking for ten feet on Amsterdam, a slight downhill grade, I could see that it was impossible, and Jim got us a cab. He insisted on paying, claiming that the slope was driving him crazy too…

After we got settled at the restaurant, people started bringing out whatever they brought to share.  I brought something to read about suicide that Andrew had actually sent me, which was utterly depressing, but perhaps clarifying. Helene read a beautiful, surprisingly happy, passage from one of Andrew's favorite books, Sophie's Choice. Jim passed around all sorts of old snapshots of various parties and get togethers back in the day. We all looked so young! In so many pictures, Andrew was beaming and giving the thumbs up. One picture showed him and some others on a roof  top at Columbia, where they were not supposed to be. (Looking down they could see the tiny security team running towards the building!) The mood went quickly from uproarious to desperately sad. Several of us were crying when the food came. At other times, I think our noise level was probably overwhelming the whole place. A vasectomy story made me laugh until my sides literally hurt. There was sort of the eerie feeling of not knowing what to do, what should we DO to somehow mark this event. No one knew. But we all had an overwhelming instinct to at least be together. Be with others who are also as upset and also don't know what to do to cope with the fact that this has happened. It was balm. I'm so glad I made there, against all odds.

I had to sneak another half an antivert to get through the evening. Seems a half pill takes the vertigo edge off for three hours, then I need another half to keep going. But I managed. If I sat still, I didn't even notice I was dizzy. After 36 hours of no nursing, my breasts were of granite. It was exceedingly hot weather. Coming out on to the sloped sidewalk at night, making it into another cab, was all trying. But I had help, and once I had accomplished the main goal, I felt better.

This morning, at LaGuardia very early, I waved away my last wheelchair. I remembered that my new vestibular therapist Vince told me that the people who heal the fastest are the ones who get out there and use their balance systems. The ones who take longer are fearful and sit on the couch. It's like a muscle that has to be rebuilt. Following this logic, it was a good and healthy thing for my recovery to go there and, however imperfectly, struggle through it. Empowering. I will not be trapped by this condition. It was exceedingly hard, there's no doubt. But so worth it. 

The last few days have been a blur of medical facilities, babysitter finding, insurance wrangling, and boy-struggling. I'm pretty tired by all of it. But that has been the theme of the whole summer hasn't it? I think I work 20 hours a week on managing my vestibular disorder. Now that it's seeming more and more like an ear infection gone wrong, it's hard to imagine how much trouble it has been. But so it goes! The options are few.

On Wednesday, after clearing the idea with insurance, I called up the new vestibular therapist that Dr. White at the Clinic specifically wanted me to see. They had an appt at 3:15 that very day, which I wanted to take. Babysitting!! It makes everything so much harder. I called around a bit and amazingly, lucked out. I got my very favorite babysitter over here. And also, just in luck, she agreed to come the following morning so that I could keep my MRI appt., despite the fact that my already-scheduled babysitter was down with a sore throat. 

So I drove out to the unfamiliar world of Wadsworth, OH, where this new therapist works. It was a big bustling place, full of people on tables, odd-looking gear, people slowly walking around or in various stages of physical rehab. I knew I had come to the right place right off, when the lady who came to the waiting room called my name: she came all the way over to me and asked me, "Are you spinning right now? Can you walk on your own?" This small consideration seems lost on just about everyone who works with balance and dizziness! I've been dusted by so many brisk nurses who just call my name and take off at high speed, while I struggle along behind. 

I went into the little room and met my new vestibular therapist, Vince, who I already adore. He sat down and began to ask me strange questions, such as  have I sprained my ankle? I said, "You mean, ever in my life? Yeah, I really tore this one up about fifteen years ago." It seemed surprising to imagine that this was relevant, but he said, "That's probably part of the problem right now." He explained that your balance centers are, of course your ears, but also your ankles and your neck. After examining me all over and having me stand on foam (!! horrid!!) and testing my strength and seeing how far I could turn my head this way and that, he graded my parts: ears, D; ankle, B; neck, C-. So our balance therapy (going to be twice a week for now, with lots of homework!) is going to center on ankle strengthening, neck flexibility, as well as obvious balance exercises.

Huh. This seems to me to be a much more thorough and comprehensive approach. Also, here's the best part– salt!! He asked about my blood pressure, which I said was normal to slightly low in general. He said that some of my dizziness upon standing up was probably low blood pressure dizziness, and that my two months of low salt diet and diuretics had probably made that a lot worse! I told him about my extreme low blood pressure experience– a few eeks ago I was taking double diuretics and being extremely careful about the salt, almost no salt, because I was so dizzy for days on end and desperate to make it stop. Well, the dizziness didn't let up, but I got such low blood pressure that it was almost dangerous– I was ice cold and weak, pinned to the couch. I was by myself and actually got scared lying there, such that I got up to consult with Dr. Google, and while up decided to hell with it and ate some salty leftover restaurant food of Ben's. That made it all better! Then at Pawleys I ate lots and lots of salt… yum. And didn't seem any more or less dizzy than I had before. In fact the salt test at Pawleys was part of my move to another specialist– it just wasn't correlating with salt at all. What was triggering my dizziness seemed to be all about the physical environment, slopes, darkness, uneven pavement, that type of thing.

Anyway– Vince says that I should eat salt. In fact, he says that I should eat EXTRA salt! He says I should keep V-8 juice on hand for moments of standing up dizziness. He says low blood pressure dizziness is something they deal with all the time.  He also said that he suspects that it's all just a virus that attacked my inner ear and left a lot of damage in its wake… he sees that all the time. About the idea that I would have three months of upper respiratory infections, including a severe ear infection that actually ruptured, and THEN in a totally unrelated event, just by chance, get Meniere's disease right afterwards, he said, "I don't think you'd be likely to have that kind of luck." Exactly. 

So yesterday I had the big MRI. I switched it out from another closed MRI that was scheduled today, because I wanted an open one. I didn't want to be in a drawer for an hour unable to move. I'm not claustrophobic under normal circumstances, but that is not normal. I had asked for an open MRI in the first place at my old ENT, and was told that for this body part (brain and internal auditory canals) you couldn't do it open for some reason. This seemed odd to me so I checked with Dr. White on Monday. She said, "Sure you can do the open MRI out at Hillcrest. It's 'ambient', with soft lights and music." I went in for it yesterday early in the morning.

It was very ambient. The lights in the room were soft blue, and a scene of mountains was projected on the walls. I got into the large hulking machine, wearing my special hospital outfit. The lady put ear plugs in my ears, and big earphones over the ear plugs, and slid me into the thing. It was a lot nicer than being in a drawer, because out of the corners of my eyes I could see a little bit of space around the edges. I was effectively under it rather than in it. Soft music played and I was soothed by the gentle roar of ocean sounds. However, the calming effect of this ambiance was disrupted when the jack hammers started right above me. Then it sounded like a bull dozer was idling and revving its engine alternately. Then the beautiful music started again. Indeed, I had to stifle a giggle at the idea that this was their way of relaxing me. However, what happened next was not at all humorous.

The lady came in, saying it was time for my contrast. SHe pulled just one of my arms out of the machine, and I explained to her where my best vein is. She found the vein right away, and the needle stick was no big deal. However after a few minutes of contrast running into my arm, something started to hurt. She said, "Oops, I'm gonna take that out. It just popped." Apparently the contrast needle had slipped out of my vein, but was still in my arm for a short time, and the contrast had gotten loose into my tissue. At that moment, a searing pain started to go up and down my arm.  "I'm not going to lie to you, when it gets into the tissue it really burns." She elevated my arm and began rubbing it and indeed, I think she was trying to squeeze the contrast back out of the puncture…! The pain quickly became totally excruciating, such that I was unable to keep my feet still. It felt like battery acid on the loose in my arm. I started crying. The lady was quite flustered and got me a cold pack. SHe kept saying, "is it feeling better? Is it letting up?" She clearly felt just awful that this had happened. I really didn't want to upset her, but the pain was over the top! After a little while, the shooting, tingling sort of thing did let up a bit. I agreed to let her finished the last pictures, and just got out of there. 

My arm hurt all day, and I felt totally exhausted after all that. I had both boys all afternoon and it was a marathon.

Now my fear is that she didn't get enough dye into my body, and they didn't get the picture they needed. My other fear is that i have a brain tumor.  My hope is that they will actually be able to see the damage to my balance nerve, confirm the diagnosis, and determine the scope of the problem. All this will be known today sometime… 

Yesterday I went to the Cleveland Clinic to see this new doctor, a wonderful woman who I think can make my life much, much better. She's the Head of the Vestibular and Balance Disorders department within the Head and Neck Institute. In short, she's made it her life's work to figure out why people like me can't balance. She has at her fingertips this vast department, with scores of audiologists, neurologists, vestibular testing facilities, and more I can't even fathom, to help her in this effort. In short, I got to someone who can take the whole "evaluate and treat" concept to the next level. 

My appt was at 9 a.m., and with all the Cleveland traffic, that meant I needed to leave her at about 7:30 and do battle with rush hour. I made it into the Clinic about 8:30, and I got into the little room to talk to the nurse at about 8:45. I mention the times because this turned into a grueling all-day affair. When I met the great woman herself, much like a favorite aunt I had never known about, one of the first things she said was "I'm not sure it's Meniere's." I said, "Great! I don't want to have Meniere's." She asked why I had not had an MRI yet, and seemed to think that my ENT's logic of waiting for months on end to see how my sinuses were going to clear or not clear was totally lame. She ordered an MRI for Thursday, an open, "ambient" one with soft lights and music. We'll see about that later.

I had figured that I would meet her, talk about the situation, and then she would schedule an array of tests for another day. But she asked whether I had "a little time" to stay and do some testing, and I replied that, for her, I had time for whatever she needed to do. It turned out that "a little time" meant six hours in a house of horrors especially designed for tormenting dizzy people. 

First stop, a hearing test, which I aced! My hearing has healed up since June, when I had my first and worst vertigo attack which included dramatic hearing loss in my left ear. Second stop, darkness goggles and being thrown sideways and backwards on a little bed. I had some familiarity with this from my previous run-ins with this sort test. They do this to provoke dizziness and watch your involuntary eye movements. But I had none outside of the normal range. Also, that was quite brief and Dr. White administered it herself. "I'm not seeing it," she said. "Wait here." Apparently this meant that I had failed to show her something on the easy test, and thus had to go to the hard ones.

I noticed some ominous looking harnesses attached to the wall, and this thing, sort of like a three-sided phone booth, with mountains and sky painted on the walls and a special-looking metal foot pad to stand on. I thought, "Wow, that looks awful. The poor slobs who have to do that!" Somehow it didn't occur to me that I would soon be in it. Honestly it made me a little dizzy just to LOOK at it. The horizon was all jaggedy and the colors were too bright.

Soon, this other lady came in, Angie, the Vestibular Technician. She would take care of my testing today. She said that we would be together for two hours or so, and I called Ben with that update.  He was home with the kids, expecting to go into work for the afternoon, which gradually became impossible as the day wore on. She very cheerfully asked me to stand up and get into this harness. "It goes on like a vest," she explained, holding out something that a guy over in Iraq would likely wear. She buckled me into it and then attached big straps coming from above to these big clasps on my shoulders. "This is just so you don't fall," she explained. "Also I'm right here behind you." 

Thus secured, the test began. "See that little cloud in front of you? That is your new best friend. Just keep your eyes on the cloud." I stood there, gazing at this ugly, shapeless little cloud in front of me, as the horrible orange and blue mountainscape around me began to move. The pad under my feet recorded how I distributed my weight in response. Then the pad itself began to move. Then I had to try it with my eyes closed. Then the pad suddenly tilted forward so that I almost fell. And so on, and so forth until Angie felt she had tortured me enough. She helped me out of it and on to this little bed, where I sat trying to collect my inner ear into some semblance of functioning. I was very pleased that I didn't fall and didn't vomit. "How'd I do?" I asked. "I can't tell you the results," she said. "I just collect the data. Let's just say I got a lot of good information."

Next stop: the revolving chair. Now seriously, if you say the words "revolving chair" to someone with a dizziness and balance problem, those words sound like the worst possible ones in the entire language. "um… okay…?" I replied, and docilely allowed myself to be led to the next room. There I found a round booth, with an astronaut-type chair in it. The chair had lots of straps and a Christopher-Reeve-type head securing thing. Oh lord… that did not look promising. So she got me into the chair, and buckled lots of buckles, securing my waist and shoulders. Then she put this big headgear on my head with two cameras above my eyes and little clear disks on stalks below my eyes to reflect the images up to the cameras. Then, pitch darkness with a little red dot to look at. The most active little dot in the world, as it turned out. The damn thing just went all over the place, sliding here and there, disappearing and reappearing. It would pop up someplace and then vanish, and I had to keep my eyes in that exact spot without blinking. Trust me, this is hard. But then the chair started to spin, slowly at first, switch directions, spin again. It never spun all that fast, but seeing as I can't cope with still objects, this was not any fun at all. Worse yet, though, was the part where the chair sat still. Gray and white lines were projected on the walls all around me, and they spun. THAT was horrible. Or maybe the worst part was when she cheerfully said, "I call this one 'the washing machine'!" Right, true to its name it agitated me rapidly from side to side.

Eventually it was over. She unbuckled me but had me sit in the chair for a long time. As I sat still and tried to regain some shred of equilibrium, ANgie and I chatted. Kind of a long and awkward chat. We were waiting for the next room to become available. Since they were shoehorning me in, I didn't complain about that. But by this time I was terribly hungry, stomach growling, and thirsty. I got Angie to bring me some graham crackers and apple juice, which took the edge off. Probably best to not have a full stomach, I figured! But being light-headed due to starvation wasn't helping either.

Last stop, the worst one as it turned out, was the waterboarding room. There instead of pretending to drown you, they shoot water in your ears to make you the dizziest of all! Yes. This was the torture that reduced me to tears and had me hyperventilating while trying to count backwards from 70 by twos. The jets of scalding and freezing water, pumped into one ear and one temp at a time, apparently make the fluid in the inner ear change pressure and move suddenly. The result: the worst most gripping dizziness ever, combined with pitch darkness goggles. Even so, after I had survived what I thought was the utter limit of hell, Angie told me, "Looking at your numbers, I've had people in here with three times that level of intensity." What is the proper response to this, "did they live?" or "so I'm a wimp?" I don't know. I think I just gasped in horror at the idea. How?? 

Man, after all this I really felt that I needed to be carried out on a stretcher. Angie got me some ginger ale and after a long process of sitting up and gathering my shreds of remaining strength, she led me back to where I started. I sat in the little room, waiting in suspense for Dr. White to return and tell me what I have. Eventually I heard her outside the door, "She's very interesting… a very interesting case," I heard her saying. I was interesting! And yet, this is one situation where being ordinary is the advantage. One case where I would like to be, run-of-the-mill and … easy to treat. She came in with a young resident and said to me, "You're very interesting…." she began. "Something happened to your ear. I don't know what. But it's been damaged."

"So, it's an injury? Not Meniere's?"

"I'm not sure about the Meniere's. But I'm not ready to say it's Meniere's yet. To be Meniere's, I want you lying on the floor, spinning and vomiting for like six months."

To which I had to reply– "Oh, god, no… I do NOT want that!"

"But one attack with hearing loss does not make it Meniere's. It needs to go on and on. And I can fix that vertigo. [She can??] I think what happened here is that your ear was damaged and now it's healing. Your hearing is already back to normal. It's perfect. Your ability to balance will come back too, I think, with time and physical therapy. Also– " she laughed, "You're really bad at that!"

"I am?"

"Yes, that was your worst test of all. The others were all basically within normal limits. But you can't balance at all. I think your brain has decided to stop listening to your ear after all the LYING."

So… there has been a breech of trust between my balance nerve and my brain..  that's all…

"But what do you think happened to my inner ear?" I asked.

"I really don't know that. I can only measure how damaged it is. But one possibility is a virus. You know when you get a virus on your lip, you get a blister and it heals. When you get a virus on the labyrinth of your inner ear, it can strangle the nerve. It can damage the nerve such that it doesn't function anymore… but it can also heal."

Healing… what a wonderful concept. This is so much better — to think that what I have is akin to a broken leg, something finite. I don't even care if it's going to be six months of hardcore physical therapy. ("there will be LOTS of homework," she said.) I will happily go through that with the prospect that someday, some way, it will be normal again.

To say that I was exhausted after this, and starved, and limp, does not cover how miserable I was. And to top it off, I came out into a major hurricane. I mean, trees doubled over, lashing rain, power lines down, the whole bit. I had to sit in the car, which the wind was violently rocking, under a pelt of hail, for quite a while until it calmed down enough to drive. And then I had to navigate through a landscape littered with branches, with lakes of water at each intersection, and all the stop lights out. I sat on the interstate for half an hour at a complete stop– apparently we were waiting for standing water to drain.

By the time I finally stumbled into the house, it was 4:30. I could barely make it to the couch. But I was happy. I have a new diagnosis, one that I think it right, and one that I like much, much better.  

This is surely a premature milestone in my life. I'm wavering between being incredibly depressed that it has come to this, and being all (sing it) "I am strong… I am invincible… I am WOOOMAAAN!" I'm not going to let the fact that I can't balance on a level surface stop me from living a normal life! Right!!

Here's the cane I got:

Classic Design Folding Cane – Pansie Floral function popUpMedium(URL) { day = new Date(); id = day.getTime(); eval("page" + id + " = window.open(URL, '" + id + "', 'toolbar=0,scrollbars=0,location=0,status=0,menubar=0,resizable=1,width=685,height=550');"); }
	Quantity in Basket: None Item #: 5250pan Price: $29.00 Free Shipping* on orders over $60 No Sales Tax 6 Month Limited Warranty* Low Prices & 100% Satisfaction Guarantee Excellent Customer Service w/ Live Phone Support Comes with a complimentary high-quality 20 mm rubber tip Foldable and Adjustable Works well for travel or to easily pac

It to me says "James Bond"– the way it folds up and can leap out to my rescue as a surprise gadget I can carry in my shoulder bag. The pansies, okay, maybe a little more Miss Marple than James Bond. But if they in ANY small way soothe or cheer me during this ordeal, that's a win.

My very dear and supportive husband tells me to look at it that if I tore my ACL I would not be all weird about needing a cane. I would not feel, as I sort of do at this point, that I had just aged 30 years and suddenly become decrepit. So my inner ear is injured somehow, which remains to be seen exactly how. And like many injuries, while it's healing, a person needs extra support. I hope that it will make the world less terrifying, and that I will be able to go freely about with great confidence.  It will be here in a couple days, and then I'll tell you whether it works or not.

Yesterday I met with my vestibular therapist, the pragmatic and warm Gina. However, she ended up doing no therapy on me at all. No walking up and down horrible slanted things, no trying to look at eye charts while she shakes my head from side to side. She just interviewed me about how it's been going, and shortly concluded that she can't help me after all. This was disappointing, in that the vestibular therapy was the one thing I felt was actually going to work. She says that if I have Meniere's, it's not following the normal path, that my daily struggles are more like someone twenty years into it rather than two months. She's wondering what I may have in addition to Meniere's… a viral infection of the labyrinth? A brain tumor? Something else entirely? She said that this point I should probably go to the next level and see this highly, highly specialized otoneurologist– a neurologist who just works with inner ear problems. That he will have much more detailed tests than the normal ENT can do, and he WILL figure out (and one would hope, cure) whatever in the hell is wrong in there.

SO she gave me a name of the oto-neuro-guru in the area, and sure enough he's not covered by our insurance. However, they did say that if I get a written referral from my in-network ENT, and there is no other otoneurologist in the network, they might consider treating paying for it. (Otherwise it's $4,000 deductible, which honestly if it would really cure me I think we would cough up.) Tomorrow I see my ENT again and will work on this, diplomatically trying to get him to agree that this is where we should go from here. Gina encourages me that Dr. Mooney is not arrogant and will be fine with my moving on to the next level. At the very least I think I should get an MRI at this point. I have this nagging worry that I have a brain tumor that's causing all this. 

Meanwhile, I'm home full-time with two rambunctious boys. Three weeks to go until school starts, and lots of long days in between. Elias kicked off the day by throwing a flashlight, getting a time-out; throwing a piece of train track, getting a time out; and then throwing a rock at me, and getting a time out! With yelling! And that was only in the first fifteen minutes, before I had even one sip of my tea. He's devoted himself to destroying the house methodically, room by room, all day. Yesterday he crushed crackers all over the kitchen, which I had to clean up. Isaac forgot to turn off the faucet and walked away, such that the bathroom sink over flowed and water actually started to rain down through the floor into the basement. I had to clean that up. Lena dog seems to be having some sort of emotional or medical problem– she peed on Elias's bed! She peed on the floor in the kitchen, and I had to clean THAT and THAT up! Basically I struggled all day to maintain some semblance of order, and still, when Ben came home it was a pretty chaotic scene. And yet, I can't fathom going someplace like the zoo to tire out the little monkeys. I will be dizzy in minutes… 

When the cane arrives will it be easier to get them out of the house? And generally to function?

I hope so! 

We just got back yesterday from our sojourn to the wonderful south. I'm getting so fond of the whole region, and it's not just the grits and sweet tea. The Inn where we stay has become a second home to us– we stay in the same room, and the same people are there usually also the same week each year. So we just walk in and say hi y'all! Give everyone kisses, take our bags upstairs by ourselves, and begin vacationing. The kids pick up where they left off last year– it's amazingly all girls except Isaac, but he handles it well.

This year the big question was how much or little I could do with the vertigo hanging over me all the time. I had a very bad week the week before we went down… dizzy so often and so badly! I decided to take another round of prednisone to see if it would take the edge off, and it did. But it's just a stop-gap– I can't go around taking that all the time. We stopped for a day in Greensboro to see our wonderful friends the Ortizes, whose little boy Nicolas is Isaac's BFF. While there I ran into lots of trouble with dizziness. My friend Claudia and I attempted to walk the little kids (Stella and Elias) to a nearby playground, but I was overcome by the slope of the road. I just could not deal with it! It was also brutally hot and the kids both fell asleep, so it was no problem to bag the whole idea, but still. Later that evening I stepped out of the car at a restaurant, and immediately could not cope with the slope of the parking lot. I had to cling to the wall, and spent the rest of the evening clinging to people or groping for them in the unsteady tilting world.

This experience depressed me a great deal. Also in a couple weeks I need to got to NYC by myself because my good friend Andrew King committed suicide in May and so a group of my old writing buddies are getting together at Columbia to have some sort of gathering– wake, mini-reunion– to mark his passing. But as we were driving from Greensboro, NC, to Pawleys Island, SC, I sat in the car crying and feeling pathetic most of the time. Why do I have to have this condition? Why did my friend take his own life? Why are these two bad things converging? And how the hell am I going to get through a flight, and then from a plane, through LaGuardia, all the way to someone's house by myself?? This helplessness was overwhelmingly sad there for a while. I called people to ask for help, changed where I'm staying to a more vertigo-friendly location, and then cried extensively each time I got off the phone. I finally comforted myself that if I can't go, so be it. It remains to be seen how this works out. But I can tell you that the latest upsetting development is that I've been shopping for folding canes. That whole issue warrants an entry to itself, but I'm not happy about it! 

In any case, I had no idea how it would work to be in a place so non-vertigo-friendly as the beach. The first day I made a tour with Ben helping me, and learned that I could walk on firm sand a little bit, but not go near the water whatsoever. I could sit on a bench, but not a rocking chair. An hammock?? No way. I could not come down to the water's edge and make a sand castle, but I could sit under an umbrella in a chair and read. And since this is something I really love doing, it was very pleasant to be able to do that. I read 400 pages of Henry James, Portrait of a Lady, and found it very engrossing and wonderful. I hope that now home I can polish off the last 200 pp and see how it all comes out. Also, we had an ocean front room, so when I did need to lie down, which I did need to do sort of a lot, I could still see and hear the ocean. So that was all very nice.

One extreme low point was a trip we made to the aquarium in Charleston. Ironically, I was the one who wanted to take the kids there– it was almost like it was a plan that I had in mind before I got Meniere's disease, and then I forgot that it would not be possible for me now. In a word, it was hell. I can't describe how hellish it was. It began with a long, long ramp I had to walk up, and the ramp was flooded with packs of 80 kids in matching t-shirts. I barely made it through that ordeal (I just can't DO slopes or inclines at all!), when I got to the inside of the place and found– you guessed it– a huge tank full of fish. Being dizzy near moving creatures was not fun in the first place. I sat on a bench for a while while the kids looked around, but then it was time to move on. The next problem was an escalator. I got through that, already pretty dizzy from the ramp, and then came into another problem– a dark, cavelike environment with a faux-stone uneven floor, sloped and bumpy, more tanks of fish all around, and so on and so on. ALso it was maze-like and so crowded and there was no possible means for escape. Ben walked me from place to place and parked me on benches, while the kids constantly tried to get me to come and see things, which I could not in any way look at. I got worse and worse until I was sitting there, concentrating on my breathing, trying to stare only at stationary things (few and far between, and always the moving fish in my peripheral vision), formulating plan B: do we drag the kids out of here or do I try to get back to the car by myself? Or do I try to get some docent type person to walk me out?  It occurred to me that in a pinch I could vomit into a plastic bag I brought for soiled diapers.

When it was all over, and I didn't vomit, we topped it off with a horrible scene in the gift shop– not only the kids screaming for toys, but Ben and I disagreeing about how much to spend. Really it was all just a slice of hell. I came away from the experience recognizing that this is why people with Meniere's disease get reclusive, even agoraphobic. You start checking things off the list. I can't go to aquariums. I can't go to farmer's markets. And then it just expands to, I can't go to public, crowded places, and then I can't go out at all, and then really it's BED that's the only safe place to be. And there you are.

I really don't want this to happen to me, which is why I'm thinking of getting a folding cane to just keep in my shoulder bag for emergencies.  Ben makes the case that if I had a torn ligament or something I would use a crutch and not feel bad about it, so why is this different? Lots of reasons…! but I hope that a cane would serve as a security blanket for times when I run into something in the environment that I can't cope with, get dizzy from it, and then at least can use that to balance until I can get back to safety!

I'm seeing my vestibular therapist tomorrow, and then the ENT on Thursday. I met a doctor at Pawleys who gave me the name of a guy at Ohio State who is researching Meniere's disease and so I plan to get in touch with that person too — maybe he has some ideas for me. Also I do think I will go up to the Cleveland Clinic for another opinion. And I'm having this big allergy work-up next week. So it goes… I am still in the weeds on this, that's certain. But maybe something better– some sort of solution– is just around the corner.

But on the other hand, there were fine clear mornings at Pawleys where I felt good enough to get up and go for a fitness walk, on a flat road along the marsh. I had nice evenings sitting on the dock and chatting with people. (As the sun went down, my dizziness came up and I had to get inside before the witching hour.) There were dramatic thunder storms that swept through, and on one occasion we had a full end-to-end rainbow over the ocean.

But now Elias has just hit me over the head with a pillow, and bumped my chair forcefully and otherwise is making me dizzy– dizzy and angry! I realize he's two and he has no idea what he's doing, but after a whack like that I now may be dizzy for three hours. Can I make it to Pilates this morning? Or will this turn into a bad day? I've given up on "one day at a time"– I have to do "one hour at a time." 

this is a nice short explanation of Meniere's disease:

http://www.youtube.com/watch?v=8-b91ughElY 

So here's the latest 411 on my favorite vestibular disorder.

Yesterday I went to this vestibular therapist– it's a sub-specialty of Physical Therapy that is focussed on balance and inner ear issues. I had hoped that she could work wonders with my daily dizziness, the positional vertigo piece of the puzzle that my ENT thought I had in addition to the Menieres. They call it BPPV, and it's about these little floating crystals in the fluid in your inner ear. If they get in the wrong place, you get horrible dizziness, but on the other hand they are apparently easy to put back.Several people have sent me stories of sudden and complete recovery from vertigo with a simple head manipulation. So, hey, I hoped!!

Anyway, it was not to be. The lady, my new BFF Gina, threw me around a bit, leaning me backwards suddenly with my head to one side, and things like that. Then she would gaze directly at my eyes to see if I had any of the nystagmus– involuntary eye movements that reveal your dizziness. However try as she might, she could not provoke my eyes to do that. Thus she could not determine any crystal in the wrong place and could not fix it.  "You do not have positional vertigo," she declared.

However, another test was more revealing. In this test, she had me look at an eye chart maybe 6 feet away. I could read almost the bottom line, better than 20/20 (it's my near vision that's gone to pot). Then while she had me looking at the eye chart, she shook my head violently from side to side and asked me to read a line, while she was shaking it. This was horrible!! And the line I could read was pretty huge. She counted afterwards and said that I had lost 8 lines of vision, and a normal person would have lost only 1 or 2.  Then I had to walk across a room, stop suddenly, pivot, walk while looking side to side and up and down, and all that sort of thing. She kept track of when I lost my balance the most.

Bottom line after all this, she said that I am "visually dependent." I'm using my eyes for balance because my inner ear is sucking ass. (That's the lay term for it.) This explains why I couldn't cope with the farmer's market (and was dizzy for two days after trying it)– The grass was mowed fairly evenly, but it hid contours. Thus my foot would land just slightly higher or lower than I anticipated based on what I saw. The result: dizziness. WHy dizziness? Well, the brain is getting all sorts of information– from the left ear comes wrong, distorted information. From the right ear, correct information. From the sensation of the ground under my feet, additional information. From eyes, the horizon, additional information. When something surprising happens, my brain quite easily gets overloaded, can't make sense of it, and I get real, real dizzy.

I asked her why stepping ankle deep into a calm lake was so horrible for me (total nausea and dizziness at once!)– well, she explained, you hide your feet from your eyes, you add shifting ground under your feet, you add buoyancy, and effectively you've immediately overloaded your brain. Why can't I tolerate darkness? "darkness is not your friend," she said. "You are visually dependent. You need your eyes for balance. Take away the key thing you rely on, and it's like sending a blind person into traffic." 

However, the good news about this is that she can actually help me with this. She can't help me with the Meniere's itself– she can't keep away vertigo attacks or make them milder or anything like that. But this visual thing is causing my every-day dizziness in between attacks, and it would surely be a help to at least make that part go away!

I have to basically train my brain to use a new organ for a new task. So I have this exercise I'm supposed to do three times a day: put a magazine or a piece of newsprint on the wall about arm's length away. Fix your gaze on one specific letter. Then turn your head, side to side, while keeping your gaze fixed on the letter. Go faster and faster until it starts to blur, or go double, or whatever. Shoot for 60 seconds in a row. I didn't do it yesterday, because I felt pretty rough all day after she had dizzied me up. And today, I've been dizzy and nauseated the whole time. I can't even fathom trying such thing while I'm already dizzy– and I don't think she'd want me to.

Tomorrow we leave for Pawleys Island SC. I'm trying to imagine what I will be able to do there now that swimming in the ocean and lying in hammocks and sitting in rocking chairs are all out of the question. But I can sit on the beach and read– I think I will be able to do this. The boys will be occupied. Ben will be there to chase them. Other kids will be there and lots of sand-water projects that can be so absorbing. Someone else will cook the meals and tidy up the room. They have laundry service. And so, all in all I hope it will be restful! 

I'm not looking forward to the drive tomorrow– why does West Virginia have to be so mountainous??– but I have drugs. I can take them if I want to just go to a dark inky pool far away and wake up when we get there.