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.

My aching back

You'd think I'd be used to change by now, after sixty-six years on the planet. Nope. Still not used to it. Still cranky when things change. Is it masochistic that I keep putting myself into situations that produce massive change? Maybe it's not masochistic. Maybe it's courageous. Did you ever think of that?

Speaking of cranky, I have a bone to pick with Microsoft. They had this nice little program called Picture Manager, really great for editing my drawings. Along with good old Paint, I can take my crummy illustrations drawn on lined journal paper and erase the blue lines, tidy them up, reduce the gray, and deepen the midtones. A few iterations ago, Microsoft stopped offering Picture Manager as part of Office. I have happily used Picture Manager for years on my old desktop but I don't have it on my laptop. 

Picture Manager came installed with MS Office 2010, which is what my desktop system was running, up until yesterday when the graphics card fizzled from dust, decay, cat hair, and old age. In fact, pretty much what has happened to me the past fifteen years just happened to my desktop computer system. Kaput. 

I'm grieving today for my desktop system. I'm also really grateful to the computer gods who kept the graphics card running long enough to finish a massive editing job with a serious deadline. I finished the job at 1:00 a.m. last night, went to bed, and woke up to a dead computer. Talk about miraculous timing. Bummer, my computer is dead, but hallelujah, it picked the right moment to die. Maybe there is a god.

I went to Dr. Google, who has all the explanations for everything, including the answer to the question What are these weird splotches on my arms and legs? and discovered that 2010 Sharepoint has Picture Manager, and I can download it for free. The kind people on the internet showed me what to do, and it worked, and now I have Picture Manager on my laptop. Yay. My laptop is to my desktop as the tortoise is to the hare, so it took quite a while to download (yes, yes, I agree, take my first born), install, customize just for Picture Manager, search for the folders with pictures in them, and then find the image I wanted to use. You can see I didn't get all the blue lines out, but I never do. Now that my desktop system is gunnysack, my printer/scanner will no longer work either. That means no more scanning of my drawings. Now I must use my smartphone to photograph my drawings. No more easy peasy. Everything creativity related now is slower, harder, and grimmer.

Change. You'd think after all this time.

Speaking of aching backs, car camping! When E called it a shakedown cruise, truer words never spilled over the epiglottis. My bed platform was sturdy but hard as only a plastic shelf with a one-inch camping pad and a pile of fleece blankets can be. That is to say, many long moments of wondering, what weird kind of frozen hell is this? Sleeping in a minivan in the middle of a freezing desert? I win the Amana Freezer for insane choices. I was saved by technology in the form of a dinky powerbank, my new boyfriend, Jackery, a 240 watt battery that powered my 70 watt heating pad that kept my feet warm during the night. I would not have made it without that heating pad. I would have been crying long before dawn. 

As it was, dawn was a long time coming. Do you know how dark and cold the desert gets when the sun goes down in the winter? Yeah, you probably do. You probably do your research before you go camping and wisely decide not to camp in the desert during the winter. Not me. I have to learn it all the long dark stupid cold hard way. Darkness comes fast and goes away reluctantly. Those three nights seemed to last forever, with a little bit of daylight in between. A watched sunrise never rises, isn't that how it goes? Something like that. You would make sure you have proper lighting in your car after dark, wouldn't you, you expert camper you. So you could do something productive, like, I don't know, blow on your freezing fingers or something.

I was shaken up good and proper on this shakedown cruise, and now I know I can survive in my car if I have to. I hope I don't have to live a long time in my car, but now I know I can do it. I can sleep (fitfully), cook, eat, bathe (sort of), poop in a bucket (an experience you should not miss for yourself), and stay warm (more or less, with my Jackery) in my car. And it requires much less paraphernalia than I thought. It was strange to wake up, fix coffee, and wonder, where the hell am I? And keep on drinking my coffee.

I understand the difference between low desert and high desert, but I guess I have to experience the difference in order to really get it, if you know what I mean. I whined last week about elevation. I kept trying to pay attention to my head during my road trip around Southern Arizona and into California. My head wasn't perfectly balanced in the low desert, but it went crazy when I got back to the high desert. That should tell me something. 

Okay, enough palaver. My head is reeling, my ear is crackling. That means we are expecting snow flurries tomorrow. 
 

Elevation is not the same as transcendence

Who knew elevation matters? Maybe you know all about elevation and air pressure. I'm a slow science learner. The experts tell me air pressure decreases the closer one gets to sea level. I associate low air pressure with S.A.D., clouds, wind, and rain. In most places I've been (which isn't all that many), air pressure drops when crappy weather moves in, which is why I prefer not to stay in places with crappy weather (like Portland). So should I head to sea level or not?

I don't understand the mechanics of vestibular disturbance. When the air pressure decreases, subjectively my inner ears sometimes feel more stable. However, when clouds roll in and rain starts pouring, my emotional health tumbles. (I think probably Hawaii is the place for me, but where would I park my home on wheels?) 

Last night around 11 p.m. a strange thing happened. I had a five minute respite. It took me a couple minutes to realize what was happening, so I missed enjoying the entire five minutes. Five minutes of not being off balance, of not hearing the crackling in my Eustachian Tube. It was a surprising phenomenon, to be set free. I felt normal. I couldn't believe it. I had to test it, of course. I bent over. I moved around. My head behaved normally, that is to say, I was not dizzy or off balance, and my crackling ear was silent.

Ah, blessed silence. 

I could hardly believe it was while it was happening, and I knew it wouldn't last, because why would it suddenly resolve after all this time? I hadn't done anything to warrant a miracle. That would definitely be evidence of god, and I'm not going there. Thus I was not surprised or disappointed when a few minutes later, as soon as I went to bed (which means getting horizontal), the pressure and noise were back, my old nemesis, the recurrent chronic oscillating freight train in my head. 

Oscillating is a new word I found to describe the intermittent recurring pattern of this chronic affliction. There is a thing called persistent oscillating vertigo. It is associated with mal de debarquement syndrome, which is a vestibular malady some people get after traveling by plane or boat. I don't have that, because I haven't traveled for years except by car, but apparently it's possible to have POV without having traveled, so maybe I've diagnosed myself. Kudos to me. According to Dr. Google, ETD and MDD are both rare and poorly understood disorders that ENTs would rather ignore. Which is probably why my ENTs proposed solution was to poke a hole in my eardrum. 

The remedies for almost all the vestibular maladies are the same. Drugs, therapy, and vestibular rehabilitation. For now, I'm choosing to soldier through on my own, doing my best to ignore the whole annoying mess.

You might say, well, Carol, you clearly aren't ignoring it, because you write about it every damn week in this stupid blog. Well, you would be right. I complain here in this blog because I'm not taking drugs, getting therapy, or doing physical rehab. I think if I were doing any or all of those things, I might be a happier (but poorer) person and therefore less inclined to complain here (about vestibular issues, there's always more to whine about). 

Speaking of complaining, the road trip to Quartzite has been delayed a day due to inclement weather. The storms destroying California are moving into Arizona, bringing high winds, rain, and chilly temps. I'll get there eventually. I have to find out for myself what it looks and feels like in other places. Quartzite is about 1,000 feet lower in elevation than Tucson, so it is possible my head will be happier there. I doubt it. I don't want to assume anything. However, the five minutes of respite I had last night gives me reason to hope.

One way out

As I walked along the bike path next to the Rillito River this afternoon, dodging bicyclists and enjoying the winter sun baking the back of my neck, a bicyclist rode by and said, "I saw a prairie dog." He could have been talking on the phone using invisible Blue Tooth earbuds, but I assumed he was talking to me, so I said, "Prairie dog?" He was long gone but I looked around to see if I could spot something poking its head up out of a hole in the ground. The dry riverbed was wide, full of sand and scrubby trees, probably good habitat for a critter who burrows, at least until monsoon floods sweep it into the next county. 

Not five minutes later, another bicyclist rode by me and asked, "Did you see the pigs?" She sped on by before I could ask, "Do you mean javelinas?" I assumed she wasn't from around here, maybe a newbie to Tucson, unlike me, the almost two-year resident to whom javelinas are as common as possums. Ho-hum. A couple days ago, I saw a dead one on the side of the road as I was driving by. If you see one dead javelina, you'll probably see more. They travel in squadrons. After the bicyclist had gone by, I thought, there is a possibility the woman was talking about pigs on the phone with someone in Nebraska, not addressing me at all. 

I always make everything about me.

Speaking about making everything about me, yesterday was the second anniversary of the death of my maternal parental unit. The whole day had a bit of a gray tinge to it. I try not to think of her last hours. I try to remember her from before 2016, but it's as if I'm conjuring two different people. Before she moved into the retirement home, she was strong, independent, and opinionated. Dementia was chipping at her brain, though, and soon the foundation of her independence crumbled. Now the mother I remember is the one I moved into the care home at the end of October 2020, the one I saw every evening after dinner, the one I bundled up in fleece so we could sit outside six feet apart, the one I tried to keep alive even though we were both trapped with only one way out.

I went to the care home every evening, thinking to myself, someday I won't be doing this, also thinking, god, I hope I don't have to do this for the rest of my life. 

And then it was done, and now I'm here, and I need to be someplace else, but I don't know where yet.

I used to welcome the new year, but not anymore. Tomorrow is the third anniversary of the death of my beloved cat Eddie. That day scrapes a hole in my heart every time I think of it. I guess I should be thankful Mom and Eddie didn't die the same year. That would have been the end of me.

No wonder my heart stutters. No wonder I can't get my balance.

After the latest heart scan, I'm ignoring my heart, even when it swoops and pounds. I don't want to fret about it anymore. I'm not imminently dying so what else is there to do but pretend like it isn't happening? Works for me. As far as the balance problem goes, the remedies seem to be the same, no matter the diagnosis. Do I have BPPV, PPPD, MD, VM, or something else? Who knows, who cares (not the ENT, that's for sure). The usual treatments are changes in diet (for migraines), medications (for migraines, seizures, depression, and anxiety), vestibular rehabilitation therapy (to retrain the brain, eyes, and ears), and cognitive behavioral therapy (for depression and anxiety).

Adjusting my diet seems to have no effect on my disequilibrium, unless I eat processed food, which gives me migraines but doesn't affect the vertigo. As for the second option, I'm not willing to add to my meds list, period. I already feel like a drug addict. Third option: Am I depressed? I don't think so. Am I anxious? Sort of, but not to the point of panic attacks. I think anyone contemplating moving everything without knowing their destination would be entitled to feel some anxiety. As for therapy, I'm always happy to dump my problems on someone who gets paid to listen to them, but it seems like a lot of work, and I don't think it would be all that productive. What would they tell me? It's okay to feel anxious, your life is a mess? Thanks, I already knew that. The only option worth pursuing in my inexpert but essential opinion is vestibular rehabilitation. I might try to get a referral but each session with a vestibular therapist will cost me, so I'll probably stick with Dr. Google. You can bet I've been reviewing all the videos I can find, and there are thousands. 

Meanwhile, I didn't think I was much of a gambler, but maybe I was wrong. I'm putting all my money on location, location, location. I recognize that packing up and heading west might not produce the desired outcome. What I mean is, doing a geographical might not make my spinning head feel better. What is Plan B? Thanks for asking. I have some ideas, but for now, let's stay out of the wreckage of the future. 

Making it visible

 

Happy new year, Blogbots. I've had this drawing ready to go since 2016. How are you doing so far on your resolutions for the new year? Great, glad to hear it. Me neither. I don't see the point. I don't know if I will get out of bed tomorrow. 

My computer has been warning me all day of sleet and rain, starting and stopping. Sleet! It's chilly here in Tucson, but not that chilly. Now the widget is cautioning me about wind. Heavy rain moved in, taking my head down with it. The sound of rain on the metal awnings at the Trailer de Tesserae is alternately soothing and unsettling. Rain here is rare enough that when it happens, it comes as a shock.

I grew up in rain, probably was born while it was raining (3 a.m. on a mid-October morning in Portland, Oregon), so rain is not a stranger to me. For some reason, though, I missed out on the downy feathers and webbed feet. I got S.A.D. and a desire to head for drier climes. 

I did not factor in this stupid inner ear problem. When the clouds roll in and the air pressure drops, I know the washing machine in my head is going to go full-spin cycle. 

I'm tired of having an invisible disability. Nobody knows I'm suffering unless I complain. From the outside, I look pretty normal, not counting the occasional nystagmus and faltering gait. The noise in my ear is not audible to anyone else, including the ENT, which is why her suggested remedies were for me to stop drinking coffee and allow her to poke a hole in my eardrum. I said no to both suggestions. 

To get the sympathy I seek, I've been working on a facial expression I can use when the symptoms take over my head. This is so you will know I'm suffering. I'm dabbling with a gritted-teeth, squint-eyed sort of look. If I do it right, every 45 to 90 seconds, a look will come over my face. I'll hold it for 10 or 15 seconds and then relax when the ear crackling subsides. I guess I could just wear a sign around my neck. One side would say malfunction in progress, please stand by. The other side would say, talk now and make it snappy.

It probably won't work. Anyone who sees me with that expression will just assume I'm passing gas. That means to avoid social humiliation, I will still have to explain that the model freight train in my inner ear has just roared into the station. It's on a track. It just keeps going in circles, pulling in every 45 to 90 seconds, hissing for 10 to 15 seconds, and then pulling out again, whoo whoo, round and round and round. 

I've trained myself to ignore the hissing and rattling in my ear, mostly. However, it's like those parents you see sometimes in the grocery store checkout line, ignoring their child as the child yells repeatedly and increasingly loudly that they must have candy now. The parent can hold a long conversation with another person while tuning out their child's moans and pleas. The child knows there is a risk in keeping up the demands. Sooner or later, the tone of the child's voice will penetrate the carefully constructed dam protecting the parent's tenuous internal calm. When the dam is breached, all that pent-up fury comes boiling out. It's not a happy sight to see a parental meltdown in a public place. Those things are best left to the privacy of the home, which is how my mother handled it.

This malady is a slow-drip faucet from hell, wearing a hole in my skull. Every now and then, the carefully constructed barrier protecting me from awareness of this incessant ear rattling and pounding vertigo breaks down. That is when I'd like to shove a pencil in my ear while driving my car off a cliff. 

Speaking of driving my car off a cliff, road trip! Coming soon.