The Chronic Malcontent wobbles into nomad life

My younger brother used to be able to shoot down house flies with rubber bands. That takes some real skill. I don't have that skill. I resort to a spray bottle of alcohol. That used to work well on the house flies in Portland, even the great big ones. 

Here in the Southern Arizona desert, flies are hardy, tough little addicts. Alcohol just excites them. At least that is the way it looks to me. It's possible they are being replaced at the rate I shoot them down, like mercernary infantry who don't care if they live or die. It's possible the carpet is littered with carcasses, and I'll find them at some date long into the future when I do a deep clean on this little caravan. I hung a sheer curtain over the open doorway. It's folded over at the top, and multiple species of flies have congregated at the top of the fold. How they got in there I have no idea. What they are doing there is less of a mystery. I assume they skitter back and forth at the top of the fold because they are seeking the exit. Aren't we all.

Speaking of exit-seeking, I had my first appointment with the physical therapy suggested by the neurologist. We got off to a rocky start—I had failed to notice that one of the three pages I was supposed to fill out had more information on the back (in my defense, the other two pages were blank on the back, and I hadn't eaten anything since evening the day before, fearing she might be putting me through some shenanigans that would motivate me to barf.) Anyway, I think my OCD desire to finish filling out the form mollified her somewhat. She could tell I was a good student.

I was with her for almost two hours. I answered her questions as best I could. She did tests on my vestibular system (obviously not trusting the neurologist's diagnosis), and I'm glad she did her own tests, because as it turned out, she reached a different conclusion. Or rather, she reached no conclusion.

Finally we sat down in opposite chairs. She tapped my knee. "You don't have BPPV," she said. "Your eyes are steady. No nystagmus."

"Okay," I said.

"And I don't think you have vestibular migraines, either," she continued. "Vestibular migraines come like an attack, triggered by something, like food or bright lights. You don't have attacks."

"No, mine is more like waves," I agreed. "Every minute or so, with the ear crackling. Like a downed powerline in my head."

"In my eighteen years of therapy practice, I've never seen anyone like you."

"Oh," I said, feeling both special and bereft. 

"I can't treat you for BPPV," she said. "However, I have one more test I'd like to do, if you will come back one or two more times."

I nodded, picturing my calendar, which had two PT appointments per week for the next month. 

When I mentioned the schedule, she sighed. "The scheduler that day was new. Somewhat overzealous." Then she tapped my knee again. "I don't think you are crazy." 

"Uh . . . "

"You aren't making this up. This is a real thing."

"It is to me."

"Besides the vestibular paroxysmia, there's one other possibility. You might have Triple PD." 

Having read all the literature, real and fake, I knew that PPPD is a catch-all diagnosis that practitioners use when a patient has had a vestibular trauma and can't seem to shake it off. Over time, the patient develops anxiety, fearing the onset of the next attack, and the anxiety seems to keep the vestibular system constantly on edge, leading to chronic imbalance. 

"That is treated with antidepressants," I said. I was thinking to myself, I don't have anxiety, but some of the medications the neurologist mentioned were both antidepressants and epilepsy treatments. Maybe something could be negotiated.

"I agree with you, it makes sense to try the antiseizure drugs to see if they work on the paroxysmia. It's too bad this neurologist is new," she added (news to me). "It's so hard to get other doctors to read reports sometimes."

I'm guessing my future self is going to have to do battle with the neurologist, or maybe try to find a second neurologist who might be open to prescribing antiseizure meds. However, it helps to think the PT might be in my corner. We can hope.

Meanwhile, I'm out on BLM land in a place called Red Rock. The saguaros are incredible. The flies I've already described. The wind knocked over my solar panel, my little outdoor table, and a half-gallon of water, and now it's trying to pry off the blue tarp I bungeed to my car to block the blazing sun. From the inside, it looks like I'm inside an aquarium, except for the incessant flapping noise. I was hoping the wind would die down so I could leave the tarp up all night, but I don't think I can sleep with that going on, so wish me luck, I'm going out to battle the flies, the wind, and the tarp. 

See you next week.

Not quite brain dead

The neurologist was everything I'd expected but not quite what I had hoped for. I knew I was setting myself up for disappointment. How could I not? I've been waiting since October for this appointment. It's no big surprise I built up some expectations during these long months of wondering if this person would (a) diagnose my vestibular malady accurately, (b) have a remedy, and (c) give it to me without lollygagging. 

I showed up with my stack of paperwork, hoping I'd followed all the directions properly: no food for at least four hours prior to the appointment, no coffee, no opioids. Ha. I paid my copays, stomach growling, and waited until I was called. 

Before I was allowed into the neurologist's inner sanctum, I had to endure an hour of vestibular tests similar to the ones I had at the October ENT visits but more violent. A perky young woman with long flat blonde hair briskly outfitted me with heavy goggles that were supposed to measure my eye movements. I sat on the edge of the exam table and held on as she grabbed my head in both hands and proceeded to jerk my head up and down, side to side, hard and fast. 

The purpose of this uncomfortable test (which cost me $100 because insurance doesn't cover it) was to see how much my eyes jiggled around as she upset the crystals in my ear canals. After a while, I felt like my neck was snapping, but I didn't come close to barfing. They keep trying, but I've been living on a boat (in my head) for years. I don't get seasick anymore. Plus, my stomach was empty. 

After a long tedious session, she freed me from the goggles. As I tried to regain eyelid function, she looked at the computer monitor showing a close-up of my half-open eyes, caught in a moment of misery, and said, "I saw a few small anomalies."

I waited for her to elaborate. She did not. She sent me back to wait in the hall for the main event, my session with the neurologist. At last I was ushered into a messy office dominated by a big wooden L-shaped desk. I sat in one of the two visitor chairs. She asked me to describe my experience, and when I did, she interrupted every few words with staccato questions. "What does that mean? When did that start? Can you be more precise?"

I tried my best. At one point, I felt myself choking up. Finally, someone was listening to me! I mean, someone who wasn't one of my long-suffering friends. I said, "I told myself I would not cry."

She said, "Go ahead and cry. People often do. Do you have a recent audiology test?"

"You have all my records," I said. "They were scanned a few weeks ago."

She glanced at the stack of paper on her desk. "I never look at them."

I opened the envelope of originals I had brought with me, thinking I bought a cheap Walmart printer just to print out all these records for you, can I kill you now? Lucky for her, my hands were busy searching through the stack of paper. It took a while, possibly because I was having caffeine withdrawals, but I finally located the two hearing tests and handed them over. 

"I'll have my assistant make copies of these," she said. "Follow me."

She had me walk up and down a narrow hallway in various postures: one foot in front of the other, like I was being tested for a DUI. Same thing, eyes closed. Stand on one foot, then the other, then again, with eyes closed. Sometimes I fell to the right, sometimes to the left. Each time, I caught myself against the wall, feeling like a clumsy idiot and wondering if I was passing or failing. 

"Let's go into the exam room."

I followed her tall chunky figure, grudgingly admiring her colorful swirly dress. I don't remember her footwear but I am sure she wore flats. She moved way too quickly and quietly to be wearing heels. Her movements indicated she'd seen a long procession of patients before me. Like, years and years of patients, all no doubt weeping and barfing as they fumbled through her tests. Not a motion was wasted. 

She sat me on the exam table. Then, oh no. More goggles! More head grabbing and jerking and shaking, plus lots of other tests involving eye tracking. And some of the basics. Moving fast, she tested my reflexes, looked in my ears, and listened to my heart. I saw her do a double-take. "Do you know you have an irregular heartbeat?"

I explained what I could about my wimpy case of aortic stenosis.

"I'm going to call your cardiologist. Okay? Now for the hyperventilation test," she said. "Breathe in and out of your mouth, fast, for forty seconds." My neck was starting to wilt with the weight of the goggles, but I held onto the table and gamely started panting like an old dog on a hot day. Pretty soon I was feeling lighter than air, but I kept at it, thinking if I pass out, let's see if she will catch me before I crack my head on the edge of the table. If I survive, I might get rich. "Don't worry, I'm watching the clock," she said at one point. I didn't believe her. My throat started feeling raw. I coughed but kept panting. A memory surfaced of hyperventilating with friends. How old was I? Old enough to know better. 

Finally, she stopped me, took off the goggles, and pointed to the computer monitor. "Your eyes are steady as a rock. You don't have vestibular paroxysmia."

"Really."

"I think you have BPPV in a hard-to-treat ear canal, which is why the Epley never worked well for you. And I think you have vestibular migraines. I want you to get some bloodwork. We have a lab here, if that is convenient."

I could hardly feel my feet as I staggered to the wing that held the lab. My brain was sizzling. I put my name on the sign-up list outside the door, and then saw the sign: out to lunch, back at 1:30. I looked at my phone. Barely past 12:30. Argh. I stood there debating. All I wanted was coffee and food, but who wants to go through all that fasting again? I decided to wait. It was only an hour. Surely I'd reached my misery quota for the day. I found a chair in the mostly empty waiting room outside the lab and the pain management clinic, spread out my stuff, and proceeded to feel sorry for myself.

Eventually the phlebotemist returned. She poked me in a vein and drew many vials of blood. I lost count after eight. I was feeling pretty crappy at that point. Now I get why they have those adult-sized high chairs with the padded bar across the front. Just as I was thinking, bye bye, she yanked out the needle, gave me some water, and sent me on my way.

So there you have it. Apparently the tests do not lie, even when the diagnoses don't match my list of symptoms (although some studies have suggested about 60% of the hyperventilation tests are wrong). Of course, it is possible I have more than one illness. I'm willing to consider the BPPV diagnosis. I think the vestibular migraine diagnosis is misguided. I still think I have a case of vestibular paroxysmia. My symptoms fit, and the MRA shows that it is possible. 

Meanwhile, I have a referral to a vestibular physical therapist and yet another migraine diet handout. 

I'm going to try, I'm really going to try. I'll go to the PT. I'll let them twirl and bend me. I'll do the eye exercises. I'll eat twigs but no more nuts. No raisins, no citrus, no onions, no tomatoes. And in a few months, if I don't feel better, I will go back and beg for one of the drugs I saw on her list of medications, several of which were antiseizure medications often prescribed for vestibular paroxysmia. We'll see who wins in the end.

I feel a road trip coming on

The end of a year inspires me to look past the daily grind of living to the broader panorama of my life. Maybe you could say I'm looking under the hood to see if my engine needs an overhaul. It's barely eight o'clock in the evening here in Tucson, and already I hear fireworks in the distance. Sometimes people like to set off rockets in the wash behind the trailer. If we're really lucky somebody will set something on fire (preferably not this trailer), and the sirens will inspire a coyote chorus. Nothing says you live in the stupid cold desert like hearing a bunch of howling coyotes. 

The drawing you see here is from 1997, when I was in freefall between Los Angeles and Portland. I was trying to look on the bright side. What did I know about being homeless? Clearly nothing, judging by the insipid enthusiasm on my face (yes, that is a self-portrait, and yes, I used to have hair in those days). I was just as prone to magical thinking then as I am now, but my yearnings these days are tempered by cynicism borne of aging. It's hard to conjure much enthusiasm for adventure (or fireworks) when one is worn out from the trials of being alive. 

Oh, woe is me, I'm alive. What a tragedy. 

Being alive beats the alternative, but it's hard sometimes. The air pressure ebbs and flows, which means my vestibular system is swamped at least once per minute. The noise in my right ear is deafening. My neck aches from valiantly trying to hold my head straight, to keep my sightlines steady. When my eyes are closed, I lean to the right, so I try not to close my eyes when I am standing up. Walking in the dark is difficult. Dangerous, probably, but when you gotta go, you gotta go. I don't think this vestibular paroxysmia malady is getting worse, but it's not getting any better. I am waiting impatiently for my visit to the neurologist in February. Maybe she'll have some answers about this downed powerline in my head. It's just as possible she will tell me to quit whining and send me home. 

Home. I still hope such a place exists. I plan to continue my quest. I could give up, surrender to Tucson, admit defeat, tell myself it doesn't matter if I live in a place that doesn't feel right to me. I could just suck it up, along with my physical maladies. But with the housing situation the way it is, I can't afford even the roach-ridden gun-infested sleazebag apartment I rented the first year I came here. My options have dwindled, and I don't think it's my fault. Rents have gone up all over the nation, and low-income seniors are being hit hard. I feel it. It hurts.

I was forty years old when I left Los Angeles to move back to Portland. I had parents then. I had a long-distance relationship that quickly fizzled and morphed into another quasi-committed relationship. In other words, I had multiple safety nets, the lowest and most moldy of which would have been my parents' basement. I never really worried about being homeless. It was kind of a cool bohemian dream, to be a vagabond. The nomad vanlife wasn't a thing yet (because YouTube hadn't been invented yet), although people did travel and live in motorhomes. I remember thinking it would be cool to live in a living room on wheels. I had a vision of selling paintings of mountains and waterfalls from the back window of my peddler's art wagon. My partner at the time was equally enamored of the possibilities of the nomad lifestyle, probably because he hoped to fly under his ex-wife's radar, maybe avoid paying taxes, skip out on child support, that sort of thing. Me, I just wanted freedom. 

Speaking of freedom, I'm headed out to Quartzsite in a week to hang out with the vanlifers, nomads, RVers, and schoolies. It will be crowded. I will not be alone. I will not be lonely. I will find kindred spirits. Or I will enjoy my solitude—just one small minivan among many travelers—cook food on my butane stove, and catch up on my sleep. I'm not sure what the internet situation will be. I don't really care. 

After that desert rendezvous ends, I'm planning on visiting my demented friend in Los Angeles. She's in a place now for nutty seniors. I complain a lot about my cognitive abilities (and I'm sure I'm dropping typos in my blogposts like my mother used to drop used tissues from every pocket), but I can still think and make decisions. Not great ones, sometimes, but I have autonomy. My poor friend has lost her ability to think, just like my mother did over the last few years of her life. But my friend is not even seventy. My heart is broken. 

Well, whose isn't, these days? If you haven't had some heartbreak in the past year, lucky you. I hope 2024 is better for all of us, no matter what kind of year we had. For those of us who struggle, I offer the familiar maxim, so 1970s but still true: not all who wander are lost. 

Your turn will come

I'd like to focus on the victory of the week, whch was that I figured out how to format an epub book that passed muster with IngramSpark—but all I can do is obsess over an ingrown hair on my upper lip. Dermotillomania strikes again. When I'm cold, skin imperfections are magnets for my roaming fingers. Every hangnail is an invitation to pull hard. My cuticles are bloody meat. It's a wonder I haven't died of flesh-eating strep. Does that sound familiar? Sorry if I repeat myself.

There's nothing new in my brain. The ruts are deep. I rehash the same tired complaints week to week, month to month. Usually people are kind enough to ignore the fact that I repeat myself. I'd like to apologize but actually I feel a bit smug. They don't yet know the frustration that awaits them when they reach for a memory and come up empty. Meanwhile, I keep picking at my lip, rubbing that hair the wrong way. 

I am regressing to my cultural mean. That is to say, like a narrow-minded person with trash roots, I'm circling the wagons on my willingness to be open-minded. I don't want to stress my brain cells with new things. The idea of learning for learning's sake sailed out the window when I got laid off from my teaching job in 2013. I have no more curiosity. This is partly why mastering the epub was such a victory. I use the word mastering hoping nobody will actually ask me to explain what I did to succeed. I went in circles for several days, punching holes in html and css with little knowledge and a lot of desperation. I kept telling myself failure is not an option, but of course failure is always an option. One day it will be the only option. I just hope it doesn't hurt much.

Meanwhile, it's the little things. Like hairs sprouting on my upper lip. 

The dark ones don't last long. If I see one, I pluck it. I'm not afraid to go in after it. If the hair is white, I can't see it. That makes me crazy. As I sit here picking at my cuticles, I contemplate the nuclear option.

Yesterday I had to thread a needle. I threaded needles for many years in my former life as a garment maker. I can thread a needle by feel, which is lucky, because my eyes no longer work right. I can't see things far away, and I can't see things up close. That means I can't see the thread or the eye of the needle. Muscle memory is the only kind of memory I have left. What's more, lately my right eye has occasionally been blocked by what looks like a round thumbprint. You could call it a flower. I guess it's a thing that happens sometimes. Oh, it hasn't happened to you? Well, your turn will come. Meanwhile, if you want to talk to me, stand about twenty feet away. 

I try not to think much. Thinking is over-rated. I do as little as possible. I used to admire people with robust intellects, you know those smartasses who read lots of nonfiction books. Not anymore. I think they are wasting brain cells in the pursuit of something that can't be retained. Sort of like Arizona uses water. 

I peaked in my twenties. It's been downhill ever since. This is ironic, because I was emotionally stunted when I was in my twenties. All those brain cells with so much capacity, like a high-powered nuclear reactor generating power to illuminate and solve all problems, and all I could do was apply them toward chasing codependent relationships. Now, forty-plus years later, I have so much more emotional intelligence and no brainpower left to use it. The nuclear power plant has imploded into dust. My weary thoughts sit mumbling around a campfire, singing kumbaya and trying to remember how to make s'mores.

In fairness to me, my capacity to think has been reduced somewhat by the washing machine in my head. Being off balance saps my will to care about anything. I'm going to the ENT for a follow-up this week. Maybe she will be able to tell me what particular brand of inner ear washing machine I have. I'm skeptical. Last year it was "Vestibular Migraines." That brand works for some people, but me, I give it zero stars. This year, the new fad is "PPPD," which stands for persistent postural perceptural dizziness. It's the brand of the week. As vestibular specialists do more research, they come up with more brands of vestibular insanity. We'll see what the ENT has to say about PPPD. She might tell me I'm really insane, like, Carol, it's all in your head. Duh. Doctors tend to blame the patient when they are too embarrassed to admit they don't know what is going on. Who could blame them? All those years in medical school, right? It's gotta hurt.

Let's keep it simple. Instead of adding up my victories and defeats to arrive at my value as a going human concern, let's just give me an attaboy for managing to cross something off my daily to-do list. As I'm going to do after I upload this blogpost.  

 

Finding the thank-you-god ledges along the journey

My friend E told me about the Thank You God Ledge in Yosemite. I looked it up and saw photos. No thanks. It's a long narrow ledge almost 2,000 feet up the face of Half Dome. Just looking at the photos makes me want to cower in the closet. However, the concept of a ledge providentially placed when one needs a respite is useful for describing my double stint at Trailer Tesserae. That's one of the names for this mobile home I'm currently living in, in case you have forgotten. Art Trailer. Artmobile. Art Box. 

I've been in Arizona almost two years. April 24 will be the two-year anniversary. After a three day 1,500 mile help-me-god trip through the desert, I landed on the ledge of Trailer Tesserae. That was before it had that name. For three months, this mobile home was a safe spot from which to learn the neighborhood and find my next perch, which turned out to be the roach-infested Bat Cave. After a year in the Bat Cave, I landed back in the Trailer, to regroup, to reconsider, to plot my next move. The plotting is starting to take shape. Last week, I told you about the shakedown cruise I took with E, who showed me how to live in my car. Camp in my car, excuse me. Let me not get ahead of myself.

For my next help-me-god trip, scheduled for mid-April, I'm driving to California and then north to Oregon to meet my siblings at the end of the month. We plan to find a nice cozy beach somewhere near the confluence of the Columbia River and the Pacific Ocean where we can scatter Mom, who for two years has been peacefully resting in ash form in a cardboard box on my brother's shelf. Sorry if I've told you all this before. I'm sure your memory is much better than mine.

I have this vague idea that along the way, my next perch (home) will manifest, and I will no longer be destination-less. I can hope. I found the Love Shack in Portland by driving and looking. Most of the great apartments are never advertised. One must troll the desirable neighborhoods looking for red handwritten for-rent signs. Miracles do happen. After successfully using a mechanic-in-a-can product last week to remedy my check engine light, I am now a believer. I just have to figure out in what general area I want to live, go there, and look for vacancies. Easy. I feel a tiny bit giddy, like a kid in an ice cream store. Do I want the Rocky Road or the Chocolate Chips Ahoy?

It's possible I'm deluding myself. Housing costs in California are far beyond my meager means. It's not likely I will have many options. Still, I'm not the boss of outcomes. It might seem exceedingly unlikely I will find affordable housing (I only need one place), but it's not impossible. I'm holding onto hope.

Meanwhile I've discovered mal de debarquement syndrome (MDDS), which is easily the most fun diagnosis I have entertained for my inner ear disturbances, just for the name alone. You have to say it with a French accent, to really get the most enjoyment from it. I give myself a new diagnosis weekly, just for the hell of it, because why not? The ENT took the easy way out by slapping vestibular migraines on my chart before she offered to poke a hole in my eardrum. I'm not saying I don't have vestibular migraines, but I also have symptoms that align with other vestibular maladies, of which there are many. While I'm thinking of it, riddle me this: How come there are so many vestibular illnesses identified and named but not studied and treated? Do researchers get paid by the name? Where's their incentive to actual find the cures? Just asking for a friend.

Another fun diagnosis I entertained last week was called persistent oscillating vertigo. I mean, what's not to love? It's chronic, it's energetic, and it's mysterious. Just the word oscillating itself conjures images of egg beaters inside my inner ears, whipping up an ocotonia omelet. Before that I was into another interesting diagnosis, known as Triple P D. PPPD. Persistent postural perceptual dizziness. That's a mouthful. It's elegantly all-encompassing. I like theories that really pull everything together. PPPD is like the theory of relativity for vestibular malfunctions. So fun.

I still don't understand the mechanisms that make my right ear crackle when the waves of whatever the hell this is roll through my head. It feels mechanical, but I have a hunch my ENT, whom I will visit in early March, will tell me it truly is all in my head and I should start seeing a therapist. And taking a benzodiazapine of some kind. Not going to happen, but thanks for the suggestion, Doc.

Guess what I've been doing in my spare moments? Since yesterday, I've been staring at a video of vertical black strips rolling slowly from right to left across a white computer screen. The instructions are simple. Make the image big, get close to the screen, stare into it, and slowly bend my head from right to left and back to center, six times per minute for five minutes. Do this eight times a day for five days, and relief is all but guaranteed. I feel as if I'm in an old episode of the Avengers and any minute now, Mrs. Peel and Mr. Steed will be swooping in through the skylight to rescue me from the Hypnosis Crime Syndicate, who seek to control humanity by altering our brain waves while we think we are watching reruns of Welcome Back, Kotter. 

When I say relief is guaranteed, that assumes I actually have MDDS, which is far from certain. I don't care. To cure myself with moving vertical stripes is free, painless, and kind of cool. I find my eyes crossing, like they do when you stare into one of those 3-D Magic Eye pictures trying to find the chipmunk in all the multicolored dots. Just when you think, man, this is totally bogus, there it is, the squirrel suddenly appears, so real you could almost pick him right off the page. After you let your eyes go back to normal, for the rest of the day you feel just the slightest bit high. 

These vertical stripes are sort of like that. Eventually my eyes cross and I can see into infinity below the edge of my screen. When I move my head to follow the instructions, the lines seem to slow and stop briefly before starting again, even though I know they maintain a steady pace for the entire video. This is evidence of how my brain is messing with my eyes, and vice versa. Throw in my inner ears, my Eustachian tube . . . and apparently my spinal column, too, and no wonder I'm on a wild ride. 

I'm so over it, but I guess it is not yet done with me. The adventure continues.