I will not regret the future

To avoid living in the present, which is fraught with fear to the point of frantic dissociation, I am employing a technique known as visioning (which is basically a hallucination based on wishful thinking) to imagine a brave and hopeful future for myself after I've survived my personal version of freefall. My role model for this visioning process is Tom Hanks. No, I don't mean Forest Gump, although the temptation of saying eff it all and running across the midwestern plains has a certain appeal. No, the Tom Hanks character I am going to emulate is whatever the guy's name was in Castaway.

If you saw the movie, you remember he started out as a somewhat chunky normal guy. Then the plane crashed and he ended up castaway on a deserted island. He had to perform his own oral surgery. I don't plan to emulate that part. The memorable moment is what happens between the moment he conjures fire and the cut to the god-like creature he morphed into after a few years of surviving on fish and coconuts. 

I don't plan to start eating fish or coconuts. However, I do plan to morph into a god-like creature. God-dess. Whatever. Something other than what I am now. 

I can use my time on the road as an opportunity to reinvent myself. I can be someone different. Like, really different. You might not even recognize me in two years, that's how different I could be. Minus the plane crash (or in my case, I hope, the car crash that always seems imminent), I'm envisioning myself as the svelte survivor I will be if we fastforward a couple years. 

I will be thin. I will be smarter, somehow (not sure how that would happen, but I can hope). I will be able to get up from a chair without grimacing or grunting. My nose hairs will magically recede (but not back to my legs). I will be able to eat what normal people eat without getting sick, fat, or poor. Lactose intolerance will cease to be my nemesis. My cataracts will fade, my heart will settle into a steady rhythm, my bones will firm up, and this freight train in my head will roar off into the sunset, taking the typewriter tinnitus with it, never to be seen or heard again. I might even start to wear something other than black pajamas. Hey, as long as we're dreaming.

I don't expect all this to happen without my participation. First, of course, I will join a gym, because that is what people who want to reinvent themselves do. I might even go once in a while. Next, I will become a master of butane stove cuisine. I expect to be limited somewhat by lack of refrigeration, but if the planets align properly, I'll be able to get another power station to run my tiny portable camping fridge, currently languishing in my storage unit. There's nothing like powdered eggs cooked on a skillet in the frigid morning air. Nothing like it. I'm not sure what I will do about the hair migration problem. Even goddesses are allowed to shave their upper lips once in a while, right? I'm pretty sure. 

The only hitch in my vision might be the three caped and hooded horseriders of my personal apocalypse: my health, my teeth, and my car. These three dudes siphoned a lot of money out of my bank account the past couple years. Copays and a colonoscopy, crowns and root canals, and new tires and front end work all ganged up to just about kill me. I don't expect these nasty dudes to back off entirely, but maybe if I figure out what sacrifices to perform to placate their supervisor, I might make it through another year without running out of cash. I can hope. I am totally future tripping these days, because that is where hope is. The past is out of reach. The present is far too uncertain and painful. So what else is there? I'm running forward, not looking back.

At the end of the world, might as well be nice

In spite of the general and specific terrors of living with other humans, for some reason, I have been enjoying my interactions with people. I think it has something to do with the what-the-heck feeling I've been having at the prospect of my life imploding. I can afford to be magnimous. After all it might be my last chance to live my mantra, which last time I checked was to be loving and kind to others. Opportunities to practice abound.

Last week I bought a slab of foam rubber for my car camping bed. It took about an hour on three freeways to find the foam rubber place way out on the west side of Phoenix. Blogbots, we aren't in Scottsdale anymore! I always feel more at home when there is a pawn shop on every corner. My poor white trash roots showing, probably. Anyway, I pulled into the wayback parking lot of a big square concrete building and went in the tiny door next to the big garage door. It was clear by the looks on the faces of the workers that they didn't see many customers like me. Nevertheless the young woman behind the glass pane spoke enough English to understand my request for the firmest foam they had. She showed me a foot-square sample of 4 inch foam, almost hard as a rock. 

"That's the stuff," I said. 

She figured out the price for the size that will fit my bed platform. I was thrilled. It was a fraction of what I would have spent ordering online. Plus, I got to see the inside of a foam factory while I waited for them to cut my little piece of foam. I stood at the edge of the waiting area (no customers allowed past this line) and perused the big open space with the same delight I might have eyeballed a lovely waterfall or the cliff dwellings of Montezuma Castle.

Foam was stacked to the ceiling in places. A couple of really young women in tight jeans wrapped huge sofa cushions in plastic and stacked them in a pile near the loading door. Two men were running slabs of foam through a giant metal contraption. One of those slabs probably turned into my mattress, but it was too far across the factory for me to see. 

After about ten minutes, a short Latino man approached carrying what was obviously my specially cut mattress. 

"You want wrap plastic?" he said. I could tell he was hoping I would say no, and I did. No plastic for me, I like my slab of foam commando. I thanked him, grinning like an idiot. He probably thought I was mental. I took my new mattress out into the sunshine and loaded into the back of my car on top of the scrap wood I have to return to my storage unit this week. The van configuration is almost complete. 

So now I have two foam mattresses, one firm and dense, the other twenty year old mush that never was particularly firm, even when it was the new cushion for my home-built couch at the Love Shack in Portland. It's lost its mojo, after twenty years, if it ever had any. I'm sitting on it right now, actually. It's not an ideal typing situation, according to my arthritic hip, but it's not terrible to sleep on, even though I've violated it with my bread knife a few times, carving it in stages into something that could travel with me to Tucson. 

More interactions. Today I was at the store picking up a prescription for one of the drugs that makes it possible for my heart to refrain from murdering me. I smiled at the pharmacist and got a mildly pleasant response. I let shoppers with their carts go ahead of me and got smiles in return. I smiled at the cashier at the self-service register and she gave me a wide, gap-toothed grin and told me to have a nice day. 

I got in my car, ignoring the check engine light (my nemesis reappeared yesterday on my drive from Phoenix to Tucson). As I was maneuvering toward the exit, I saw a little car with a flat tire. An elderly woman was at the wheel. I pulled around and rolled my window down. 

"I have a flat tire!" she said.

"I see that!" I said. "Do you have someone coming to help you?" I tried to imagine me parking my car and attempting to help her change a flat tire. Right. I've changed, what, like one flat tire in my life? That was not recently, as you can imagine. 

"I'm calling Triple A," she nodded, letting me off the hook. "I have a car full of frozen food!"

"Oh, no!" I commiserated, adding some appropriate hand gestures to express my sorrow at her plight. 

We smiled at each other. I wished her luck. I pulled my car around in a circle and headed out of the parking lot, feeling like I'd connected with another human, even though I was completely useless as a potential solution to her problem. I offered her empathy rather than actual help, but sometimes just knowing someone cares enough to check and express compassion can be enough to help us show up with courage. She was in no danger. I just hope Triple A didn't keep her waiting too long.

What if I approached all my interactions with a caring heart? Good Samaritans don't always survive their altruism, sadly. But what is the point of living if we are always circling the wagons to keep ourselves safe? Total safety is an illusion. 

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.

Surreality on the fourteenth floor

What was I saying last week about suffering being optional? Oh, brother. I stand corrected. Suffering is mandatory. It's the human condition. If it's not an atmospheric firehose, it's a check engine light. If it's not prunes for breakfast because cheese has ripped you a new one, it's dementia welcoming you to hell. Check your expectations at the door, get in, fasten your seatbelt, and keep your head and arms inside the ride at all times, if you can.

I whined about cold dark nights in the desert, but you don't know cold and dark until you've seen your college friend and former business partner being eaten alive by the worst form of dementia labeled by modern medicine. How come we can get stains out of clothes with a spritz from a spray bottle but we can't clean out the crap that infiltrates our neurons and causes us to lose our personhood? It's unfair, wah wah, but then again, what's unfair for the human is a triumphant heyday for the virus or bacteria or whatever the hell it is eating up my friend's brain in great big noisy gulps. 

Last week was one of the most surreal experiences I can remember. My friend's husband paid for me to stay in a guest room at the memory care facility. In some ways the guest room resembled a posh hotel room: a bathroom bigger than my studio apartment, with a huge shower; a fully functional kitchenette with a two-burner stove, dishes, and a full-size refrigerator for my full-size pizza; a queen size bed in front of a king-size flat screen TV; and a sitting room with a loveseat and a round wooden table with two chairs. The only things I lacked were a hook for my bathrobe and functional WiFi. Did I mention it was on the fourteenth floor? It was on the fourteenth floor. The floor-to-ceiling windows looked out over Westwood Village, and in the far distance, yes, I had a view of the Pacific Ocean, glittering in the sun. 

After each visit with my friend, I retreated to this sanctuary to cry, to moan, to berate God for turning my friend into someone I didn't know, and to beg God for mercy, that if this disease should infiltrate my brain that I be given the grace to accept it and the means to locate some fentanyl, stat. 

I've been back in Tucson for two days, and I'm still gobsmacked by the horror of what happens when we lose our capacity to think. 

There were some macabre moments of levity. She managed to tie her shoelaces to each other. Fortunately I fixed it before she stood up. On her birthday, she put a red plaid flannel shirt on inside out, so the chest pockets hung like flacid bags. It looked great on her rail-thin figure—I predict we'll all be wearing our flannel shirts inside out soon. My teariest chuckles came when her old-fashioned red bat phone rang and she answered the TV remote. The TV came on, and the phone kept ringing. 

Another time she tried to answer a flat long paintbox set. In her defense, it did resemble a really big cell phone. The phone kept ringing, so I picked up the telephone receiver and held it out to her. She started mumbling into it. I tried to take the paintbox out of her other hand, but she pulled it away and stood there with a "phone" at each ear, muttering word salad. My brilliant funny friend.

My friend is still in there somewhere—I can see it in the art she makes—but her personality has shattered. She knows something is very wrong, and she's frustrated and scared. She has a minder every morning until her husband comes to do the afternoon-evening shift. She often locks the minder out of her room, paranoid to the point of tears, complaining nobody there likes her. Almost every morning, she packs a bag, determined to escape the prison. In fact, she got out a couple times. The airtag in her purse led to her rescue. She keeps trying. The first day I was there, she'd packed all her shoes into a big yellow bag, along with a couple mismatched socks, two cashmere scarves, and a toothbrush. Whatever it takes. 

Maybe it's some weird kind of blessing that the slow-motion car crash my friend is experiencing is taking so long. The pace of the disease gives us time to accept it, to say goodbye slowly, to grieve in smaller doses that aren't as painful or shocking as they would be if she'd died in an actual car crash. If I had cancer, I would want time to say goodbye. The problem is, her body lives on while her brain is dying. She could live on for several more years before her brain forgets how to tell her throat to swallow. Is it better to be aware or unaware that you are disintegrating? 

This week I got the news that another friend, an older man I served on a nonprofit board with, has decided to have his doctor remove the medical device that keeps his heart going. He's chosen the day and time. Day after tomorrow, 10:00 a.m. ET. He's said his goodbyes. A few hours after they unplug him, he will die. He's running to meet death. How badass is that? The medical system is geared to help us survive at all costs. We compassionately euthanize our pets but we pull out all the stops to keep the hopelessly ill people alive a few months longer, even if they aren't considered "terminally" ill. It's so uncivilized to usher our decrepits off the mortal coil "before their time." 

It's all just random, a slurry of genes, lifestyle, income, and social connections that determine our lifespan. Unless we opt out. Ha. Take that, fate, God, or whatever the hell you are.

As the week went on, stopped trying to understand. I learned to respond to my demented friend with compassion and encouragement, even though I had no idea most of the time what she was saying. I looked for the nuggets of joy. She lit up at the sight of her birthday cake, and for a few moments, I caught a glimpse of the person I used to know. 

I was grateful she knew me. I hated to leave, and yet I could not leave fast enough. On the morning I checked out, I kissed her cheek, told her I could not take her with me (she had packed all her socks), and got someone to let me out the lockdown door into the elevator lobby. I took my broken, raging heart down to the parking structure, got into my musty car, and drove out of that tomb into the California sunshine. Will I see my friend again? Maybe in another year she won't know me. 

That's a problem for another day. 

Today, I live.