by Floyd Skloot
As I began working my way through nine Verne novels, and watching movie versions that wildly distorted four of them, I came to appreciate Verne’s great gift for portraying mixed motives. He was a master of the paradoxical pull between loneliness and companionship, risk and security, the ties of home and the freedom of travel, capturing these tensions in moments of great resonance: Captain Nemo, sealing himself off from the world but treasuring the company of his small crew, shattered by their deaths and ritually honoring each with a sacred burial on the sea floor; Phileas Fogg risking his wager to rescue Passepartout, who had been captured by Indians after risking his life to save Fogg; the castaways of The Mysterious Island yearning for rescue even as they love the life created together on their island. At the end of that wonderful novel, the rescued group of survivors sets up a colony in Iowa so they can continue living the life apart together.
I also came to appreciate the ways in which Verne, on occasion, did cast the spell I had been looking for when reading fiction. In The Mysterious Island particularly, in much of Journey to the Center of the Earth and 20,000 Leagues Under the Sea, and occasionally in Around the World in 80 Days, I found myself drawn back each time I put down the book, found myself immersed. I was unaware of the writer or the writing, maintaining imaginative connection to the characters and their story, marveling at the revelations of character and scene.
At the same time I was reading Verne, Beverly was painting a twelve-by-sixteen picture called Latourell Creek in Fall. It now hangs where we most often sit to read together. Inspired by our visit to Latourell Falls, and informed by the photographs Beverly had taken while we were there, her painting is an impressionistic response, full of broken forms, shifting patterns, and vivid autumn colors that suggest both the energy and fleeting light within the scene. Exciting, exotic, a remote landscape, it also conveys a feeling of calm in the presence of such force, and a deep familiarity with the hidden underlying geological structures. It captures the place, but also captures Beverly’s response to it. I easily lose myself in it, as I lose myself in reading Verne, and it reminds me of the impetus to begin reading Jules Verne at age sixty, my desire for a fresh appreciation of something I had been missing, the marvel of original storytelling.
Part Three
A SPINNING WORLD
* * *
The ear that hears wind chatter in cedar
woods listens also to the earth curve
beneath your feet. It holds you in place
as you move through a spinning world.
Floyd Skloot,
from “Balance”
8
* * *
THE SIDE EFFECT OF SIDE EFFECTS
On August 8, 1990, I had “a neurological event.” I know it was August 8 because the only thing I was able to say for several hours was How could it be August 8? I know it was 1990 because I was about to participate in the clinical field trial of a new drug that might be able to treat the viral illness I’d contracted twenty months earlier, targeting my brain and leaving me so neurologically shredded I was judged totally disabled by the Social Security Administration and my skeptical insurance company. To qualify for inclusion in the drug trial, I had to have a spinal tap. It didn’t matter that I had one a year earlier for diagnostic purposes. Results of medical research have to be standardized, and each subject in the drug trial had to undergo procedures analyzed by the same lab in the same way at the same time.
Either the tap, itself a breach of cerebrospinal integrity, or a leak of spinal fluid from the site where the tap occurred, or the resulting dehydration despite all the water I dutifully drank, or a further worsening of neurological damage caused by a reactivation of the virus we were hoping to counteract or of my immune system after the introduction of a needle into my body, or some other unknown trigger had caused me to wake up on the morning of August 8, 1990, unable to figure out where I was in time or space, what was happening, or what I could do to make sense of it. Apparently, I found the morning newspaper and saw the date. Then I called my former wife, said how could it be August 8? over and over, in response to each comment or question, hung up, and went back to bed until the doorbell rang. I opened the door, naked, and greeted the woman—our new realtor, who lived down the street and had been called to help by my former wife—by saying how could it be August 8? She looked at my eyes, her gaze never drifting, told me to get dressed, and waited on the porch.
I woke up on a gurney in the emergency room at Oregon Health Sciences University, not far from where I’d had the spinal tap. My daughter was there, was not, was. My doctor came in, wiggled the IV line rehydrating my system, nodded as he spoke. It was not a stroke. It was not a tumor. It was a neurological event. These things happen. Not his fault. I will be all right. I nodded back. Of course of course. A horse is a horse of course of course. I will be all right. What, exactly, does he mean by all right? When? I can’t go home until I can pee.
I was in the hospital, so I was no longer lost in space. My daughter looked the same age I remembered her being before, a month shy of eighteen, so I was no longer lost in time. Or not too lost. Because I still had no idea how it could be August 8. Temporal uncertainty: another way of saying where I was. Temporal lobe: another way of saying where my brain lesions were. Temporal bone: another way of saying where my skull was about to explode.
Just over eight months later, the drug trial was suspended. No one got better. A lot of us, including me, got worse. But for the time being, I still had hope, had faith, that some drug or procedure or therapy might fix me.
I took a prescription drug that left me absolutely convinced a gust of wind was the reincarnation of Vladimir Nabokov. He was chasing butterflies through a meadow that didn’t exist in the woods behind our house. The odd thing was that he moved in waltz time when the music I heard was definitely samba.
I’d been seeing him for a few days, ever since I started taking the drug, but I could usually convince myself he was nothing but a trick of light. Not now, though, not anymore. Because just above the crest of the hill, and just out of Nabokov’s reach, a pair of Spring Azure butterflies danced on air as they sang Reel 2 Real’s 1994 hit “I Like to Move It” with Russian accents.
When at my doctor’s suggestion we adjusted the dosage, I really missed Nabokov for a few days. He’d seemed uncharacteristically happy there in the woods, wandering through morning mist with his net raised, looking more like an elk than a man. A ghost. I think it was the sense of being disembodied that drew me to him, made me feel we were in the moment together. Both of us in a realm beyond the corporeal. Being outside my body seemed like a good thing then.
I took a prescription drug that speckled my skin like rust on a hollyhock. I was away from home at the time, in Baltimore, and it was August, over a hundred degrees, heavy with humidity, so I thought the rash was prickly heat.
The problem with that diagnosis was that the rash didn’t resemble prickly heat’s red millet seed eruptions, was not particularly prickly, and covered nearly my whole body. So then I thought it was shingles, since I’d caught the chicken pox a year earlier, the last time I was in Baltimore, and maybe now it had reactivated as shingles. Happens. The problem with that diagnosis was that the rash didn’t resemble shingles’ crusty blisters, or hurt much.
The rash didn’t come off when I showered, or after I slept, or when I forced myself not to look at it for three hours straight, or when I took a walk, or when I drank red wine. I needed a diagnosis. Which I got when I called my dermatologist and she asked if I’d started a new drug recently. The rash went away when I stopped taking the new drug. At which point the doctor who had prescribed it suggested that I start taking it again because how could we know for sure that the drug made me break out in the rash. No.
I took a drug that made me faint when I peed in the middle of the night. Another made me pee vivid shades of saffron, coral, and cantaloupe. And another made me feel like I was at the halfway point of a hundred-meter dash and another made me so anxious I
had to take another drug to calm down. None of these drugs were meant to cure the thing that was really wrong with me, the neurological damage. Something like that, I came to understand, doesn’t get cured. The acute phase runs its course and leaves behind its aftermath. Aftermaths were what I was working on. Pain, sleep disturbance, neurotransmission problems, failures of mitochondrial energy production.
I took a drug that made me stink. I smelled so foul that people recoiled when I entered a room. My arrival at a friend’s office knocked another visitor back into the chair she’d just risen from. At the meat counter in Safeway, shoppers nearby would frown and reject the packages they were looking at, convinced of spoilage. My odor was an intense combination of garlic, sweaty socks, burnt plant matter, and organic rot. Later, Beverly referred to it as Eau de Stinky. I couldn’t smell it myself. I’d been warned, I could see its impact, but my stench was only an abstraction to me. I just felt thirsty all the time, and the taste in my mouth was like Skookum oysters about a week beyond their sell-by date. There’s a significant difference between hearing that a drug has the side effects of bad breath and body odor and seeing those effects overwhelm any space I entered.
I was taking this drug as an experiment. It had been used successfully on horses with sore muscles. It had been used successfully on humans in the United States for a disease I didn’t have, interstitial cystitis. In the later half of the twentieth century, it had been used successfully in the Soviet Union for rheumatic diseases, which I also didn’t have. It reduced abdominal adhesions in rats, neither of which were my problems.
Patients with pain rubbed it on the areas that hurt. For certain diseases, patients drank it. For other diseases, patients received intravenous infusions. It was administered to me, over the course of three months, by all means available. I drank it daily, rubbed it here and there three times a day or more if pain persisted, and once a week I went into the doctor’s tiny office, located below ground in one of the oldest buildings on the medical school campus, to receive intravenous infusions and report any developments since my last visit.
I became a walking side effect: headaches from the infusions that were worse than the ones I took the drug to remedy, skin irritation wherever I applied the stuff, deepened exhaustion, dizziness that exacerbated the existing balance problems for which I already used a cane, nausea.
I’m still surprised that I survived. That Beverly survived.
Then I had the dream, after more than fifteen years of being sick: I dreamed that I was asleep dreaming that I was sick. Since I’ve been sick so long, I’m used to dreaming about being sick. The stalk of rotting celery, rooted deep within my body and growing out of my mouth. The slowing, stumbling walk that leads me into a vast crevasse through which I fall, twirling like an oak leaf and turning from green to red to gold as I near the bottom. The mirror in which I stare at my reflection without recognition. But now I was dreaming that I was dreaming that I was sick, a new turn in the labyrinth. Or rather, a new distancing, a dreamland effort that, at first, I understood to be saying oh please, let it all have been a dream. Since being sick so long is itself like a dream, this dream was a dream of a dream-reality twice removed. What’s happened to me didn’t really happen, or is only happening on another plane, or only to my body and not to me. It will vanish as soon as I wake up.
I really thought I had the whole dream/reality thing worked out. That I wasn’t about to wake up and find it all had been just a nightmarish Twilight Zone episode. That I’d long ago accepted the facts of my illness and reconciled the obvious truth that my body and mind are connected. But then there was this dream, which seemed to suggest that some part of my mind still clung to the notion that this was all a chimera, the illness was something that would go away if perhaps I only changed my state of consciousness.
Was the dream some kind of cockamamie affirmation, showing that my true self was unaffected by the illness or by all the rippling fallout of treatments I’d tried? I already knew there were places inside me that none of this touched, that illness didn’t reach. But that didn’t mean my life-in-the-body was spared its actual pain, its compromised neurological operations, its many failures of function. There are multiple levels of reality at work in all this. The dream, I came to believe, was a metaphor for the selves I was trying to bring together, the one who was limited by his disabilities and the one—the master dreamer—who was imagining how to operate, how to slip out of the dream, despite the dreamland scenario in which he’d found himself. I was now well along the path of repossessing my body, even with its ongoing symptoms, rather than yielding it to the cascading rush of drugs and procedures.
I knew I wasn’t going to be cured, I knew I was going to have to live with the aftermath of the viral attack, I knew I had to balance symptoms against the side effects of treatments for those symptoms, blah blah blah. It was all about side effects. Even my symptoms, I think, are essentially side effects of having survived the 1988 viral attack. I had to find the point where having control over symptoms tipped against losing control to side effects, and make choices. That, for me, became the imperative, the central treatment issue.
Without consciously choosing to, I’d been moving steadily away from traditional medical approaches and was using more alternative approaches. I underwent a five-day Ayurvedic detoxification program involving brisk rubdowns and enemas and herbalized steam inhalations and hot oil drips and music, all of which left me unchanged except that I needed to wear a diaper for a few days. I had—and still have—regular acupuncture, deep massage, homeopathic remedies, naturopathic remedies, chiropractic and osteopathic adjustments, all of which bring temporary relief. And minimal side effects.
In the dream’s aftermath, convinced that the real side effect of all the side effects I’d endured was choosing to reclaim my body, I decided to learn ballroom dance. My dermatologist was getting married in late summer, her invitation had said there would be dancing, and I was going to try. Beverly and I bought two videos and I struggled to convert what I saw on the screen, where teachers would say, “Start with your right foot,” but start with the foot that was to my left as I watched. Then I’d see our reflections in the living room window and be doubly confused. The rise and fall of a waltz made me lose balance, as did twirling in the western swing, but Beverly figured out that I’d remain stable as long as her hand remained in contact with me somewhere and my eyes remained locked on hers.
At the wedding reception, of course, the band played nothing but rock. This affirmed my deep post-illness belief that it was impossible to prepare for reality. We walked onto the dance floor, which was so crowded that even if I lost my balance I wouldn’t fall. We put on the sunglasses that had been placed near every guest’s plate so we would get into the spirit of Blues Brothers cool, or so we’d feel anonymous if we made fools of ourselves. And we danced, the only ones on the floor doing western swing to the rock music. It hurt and I stumbled, unable to see where my feet were going, but gradually the other dancers made room for us and I never let go of Beverly. Though I may have been in a world of my own, others were there with me and I knew I wasn’t dreaming.
9
* * *
REVERTIGO
I can’t find my hazelwood cane. It’s not in the downstairs closet by our front door, where I was sure I’d stashed it two and a half years ago. It isn’t in the car, where it had remained during all the months I needed it, nor in my office closet upstairs, the final resting place for stuff I can’t part with. I bend and lean to reach behind a box of books by the closet wall, in case the cane has fallen back there. It hasn’t, but now I have, hitting my head against the edge of a shelf, cutting the skin, raising an instant bump.
I fall because the world is awhirl. For the last three hours, since I woke up at 6:15, I’ve been overwhelmed by vertigo. Absolutely no warning signs. I got out of bed and the room was spinning. I lurched to the bathroom and back, grabbing at walls and doorframes for support against the swaying and swirling all around me. I had
to kneel on the floor to put on my shirt, and I stumbled when I rose. I could barely make it downstairs for breakfast, holding onto the banister, concentrating on each step, and was too nauseous to eat anyway. All solid objects seemed like optical illusions, veering out of place as I approached or touched them. Trying to keep my head still, moving only my eyes, I could feel my back and shoulders tightening up, forming a shell.
At 8:30 I phoned my doctor’s triage nurse, who found a 9:45 slot for me on the schedule. Now Beverly is ready to drive us there, but I can’t find my cane and am not sure how far I can walk without falling. It’s got to be here someplace. The cane had been too important to me for too long. I’d never get rid of it.
From December 1988, when the viral attack targeted my brain, until the late spring of 2004, I couldn’t walk without a cane. Through those fifteen years, the process of achieving balance and stability—slow as it was—progressed more steadily and seemed more likely to succeed than the process of managing my damaged memory systems or powers of cognition. Even now I’ll sometimes stagger when I think, or hobble and blunder when I speak. So getting free of the cane had felt like a huge victory for me.