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.

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. 

The lure of the geographic

I grew up on a quiet shady middle class street lined with a mishmash of old farmsteads and ranch-style houses in the armpit of northeast Portland, the largest city in the state of Oregon, which is one of the states in the Pacific Northwest area of the United States of America, which is on the . . . where are we, again? I am trying to orient myself in time and space in order to determine if I have dementia. 

I no longer live on that quiet tree-lined street, and most of the trees are gone, but several of the families I grew up with are still there. My brother lives around the corner, so he keeps up with the latest news about our old neighbors. The news used to be, oh, hey, Fred had a great crop of corn this year, you want some? Lately the news is more like, wow, Bill just turned one hundred, and, did you hear, Dotty and George are moving into assisted living? 

Moving to assisted living would be a traumatic experience at any age, but especially if you have dementia. Dotty and George moved last week into a place just down the street from the retirement home where my mother used to live before we moved her to the care home. When I heard the news about Dotty and George, I thought, oh, that's sad, but now they will get the care they need. Well, the news today was when Dotty got home from the store, George had taken the car and disappeared. Some time later, the sheriffs found him at a Bimart in Damascus, which is south on the freeway from Portland some twenty miles. George got lost and couldn't find his way home.

I get it. I bet he was wondering, where's home? What is home now? Not my shabby chic ranch house on the modest street where I lived for so many years with all my wonderful neighbors and friends. No, now it's some weird cottage with people coming and going at all hours, regimented meal times, and food that comes out of an industrial-size can. Home? No thanks, not for me. 

If I had been George, I would have kept on driving. 

I worry about getting dementia. For quite a while, I pictured my dementia response as a stroll into the desert with a shovel. Wrapped in a fashionable linen coat-shroud ensemble, I would pick a spot with a view and soft sand, dig myself a narrow trench, and recline comfortably in it as the sun went down. A few shots of tequila and a handful of pills and I'd be sailing into the sunset. That seemed like a plan, if I could find some U of A student to sell me some fentanyl. Then I read some blogs about car camping and van life and learned about a concept known as pack-it-in-pack-it-out. Oh, man.

Apparently wet things don't compost in the desert! Argh. I'm a Willamette Valley girl, where people's skin grows moss and mold if they stop moving. I had no idea that when you leave organic litter behind in a desert campground, it doesn't compost. It desiccates. That means the moisture evaporates but the orange peels, French fries, apple cores, and bread crusts never disappear. The parched ground does not harbor the insects needed to turn organic waste into nice loamy compost. That means my dead body will linger on forever, like King Tut, until someone stumbles upon my peaceful overlook and discovers a gross mummy half-buried in sand clutching an empty bottle of tequila. Ick, you say? I agree. I would not want to leave that for someone to find. 

Hearing about George's story has resurrected some memories of my mother as she declined further into dementia. It's been over a year, but I don't think I'm over it yet. I wonder sometimes if I should seek professional help. Some of my friends are worried about me. I can imagine sitting across from some therapist in a Zoom room, trying to describe the past couple years. I can hear the young therapist saying, well, Carol, sounds like you have suffered some losses, but welcome to the club. You are not the only one suffering. Like, would that be helpful to hear? I don't think so. I say that to myself every day and it hasn't seemed to have improved my mental outlook. On the other hand, what if the therapist said, wow, Carol, you have really suffered some significant losses, it's amazing you are still able to function. If she said that, I would probably disintegrate into separate parts and completely cease to exist. I can't handle empathy, any more than I can handle gifts and hugs. I know. So self-centered. 

I am starting to realize that life after sixty-five for me looks like a process of coming to terms with my mortality and the mortality of others. For me, I don't weep. As my body betrays me, I muddle along from day to day with my usual grouchiness. However, I weep for other creatures near and far. I can't find the philosophical balance, that neutral spot where I can see suffering and not be devastated by it. I can't look at injustice and say, well, dictators will be dictators, let's all pray for their sorry-ass souls and keep on trucking. I can't accept that half the people in the U.S.A. would like the other half to die. Now I see that I was born and raised in a special place and time, in an oasis of peace and good health, insulated from reality. 

Getting in the car and driving until you get back home seems like a completely logical response. But if home no longer exists, where do you go?