Many of you who’ve been following me for a while know this but new people might not: My father has stage 4 terminal Melanoma (skin cancer). He was diagnosed in early July, 2021, after he finally—stubborn ass that he is—went to the doctor following my mother’s incessant urging, after (get this) a bad, ruthless cough he’d had for an entire year. Yes. A year. You heard me right, people. (Where do you think I get all my stubbornness and natural skepticism?)
Quick backstory. From 2019 to 2021 I lived in New York City. That’s right: I was there during the Pandemic, during lockdowns and everything. It was complete anarchy. In March, 2020 I was unfortunately living in what turned out to be a violent, wild West part of east Harlem. I wrote about that here. (And I wrote an entire book about the experience, a “fictional memoir” called Two Years in New York.)
My plan had been to stay at least five years, very possibly ten. But in May, 2021, my then 16-year-old niece, who’d been severely depressed for multiple complex and non-complex reasons, tried to kill herself by plowing her father’s car at 90 mph into a palm tree near LA in the middle of the night. She was found unconscious on the road. They helicoptered her to Children’s Hospital in Hollywood. Less than a week later I was on a plane to LAX. I stayed with my sister and brother-in-law and saw my niece frequently.
At that point my plan had been to remain in California for the summer and return to my tiny shoebox shotgun 3rd floor walkup in Lenox Hill (I’d broken my lease in Harlem and moved) sometime in August and to carry on with my literary life as a writer in New York City. (How romantic it all was.) Due to Covid, I hadn’t been to California in 18 months, the longest I’d ever been away from the state in my life. I missed it then almost as much as I missed a woman’s touch, missed the idea of running my cold palm along a woman’s warm, smooth skin. I hadn’t been with anyone for over a year.
But then something happened. In July, about a month or so into my stay, my father, who’d had a bad lingering cough and looked like he’d lost about 15 pounds to me, had to sit down during a game of tennis. This was rare for him. At 75, the man was still physically active, still working part-time, still walking their dogs every morning at 7am, still planning trips abroad with my mother.
Once a professor and then a computer scientist, he and I still clashed ideologically and intellectually like two sharks vying for the same prey. Arguing about politics and intellectual ideas had always been the oil that had operated the machinery that was our tense, complicated father/son bond.
He came home from that tennis game exhausted and out of it. Finally, my mother and I pressured him into seeing the doctor. And what do you know: Cancer. Stage 4. My paternal grandfather had also died of skin cancer, though a different type, and he’d made it to 86.
I stayed with my parents, in their new house in Santa Barbara which I hadn’t seen until arriving in town in June; since 1991 we’d lived in Ojai, where I grew up, 90 miles northeast of Los Angeles but, partially due to the raging and more frequent fires and the bottlenecking and minimal options of fleeing Ojai when said fires occurred, and especially after the 2017 Thomas Fire, they moved to Santa Barbara in 2020, right in the middle of the worst phase of Covid. They moved into a small, gorgeous house on a short, narrow road up a hill in an area called The Riviera with a gorgeous view of the city below and the ocean.
By September I’d let go of my Manhattan apartment; my landlord had been kind enough to let me out of the lease which I’d just resigned (for a year) less than two months prior. I didn’t even go back to the city; friends cleared out my place and shipped all my stuff (I had very little, mostly crates of books), and I hired cleaners to finish the job. By October I was living in my own small studio in Santa Barbra, ten minutes north of my folks.
My parents have the exact same birthday, only my father is five years older. October 8th. On this day, 2021, my father suddenly developed symptoms which we soon harshly discovered were Myasthenia Gravis, a rare neuromuscular disease which weakens the muscles over time. The symptoms include drooping eyes, bad eyesight, drooling, slurred, undecipherable speech, and the inability to swallow. Things went from bad to worse. Nearly choking, we had to rush him to the ER. He had to get a peg-tube surgically inserted into his stomach and be fed via liquid food.
Then we found out, via an MRI, that he had cancer in his brain.
Let’s just say it got complicated. From July 2021 to February, 2022 was the absolute worst, including ER visits, choking scares, hospital stays, constant doctor visits, rehab, worsening symptoms, brain surgery, chemo, radiation, you name it. Exhausting doesn’t describe it. Not even close. Spiritually anarchistic. Downright soul-annihilating. Brutal. My mom and I both lost weight. The stress was profound.
Caretaking became a fulltime job. I knew not one person in SB. Loneliness was like a pin prick constantly in the background. I craved sex like a poor man craves food. I missed New York. I missed my old life. I missed normalcy. Everyone around me, it seemed, was traveling and having fun. I was stuck in the first ring of Dante’s Inferno. How had this happened? I’d gone from romantic NYC writer to unlikely caretaker for a father I loved but did not understand, in a town I did not like or want to be in.
*
Through all of this my older half-sister gave not one fuck. A little backstory. We are 13 years apart; she’s 53 to my 40 now. We share a mother but have different fathers. When my mom—fresh out of the psych ward, in 1968 (a whole other story you can read here)—married her first husband, they accidently had my half-sister. Mom and the guy divorced only a few years later, in their early twenties. I was born to a much more stable—but definitely not stable enough—32-year-old mother and another man, my father, who was 37. My father for all intents and purposes raised my half-sister. Yes, her own biological father was there, too. But really, starting when my sister was about ten, around 1980, my mother and my father were her parents. They were there for everything.
My sister and I have never been close. It’s the age gap, yes, but it’s much deeper than that. For one: My sister is by far one of the most walled-off human beings I’ve ever known. Bar none. You cannot go deep—or even just a little past the shallow end—with that woman. You just can’t. She is beyond protected. She’s built a castle around her heart and her mammoth ego protects it with hard, tall, steel skyscrapers covered in sharp pikes with blade-sharp spears. You ain’t getting in. Not even her husband: I asked him last year when he and I had some authentic talks after my niece’s suicide attempt.
She’s also an alcoholic and a depressive, two traits that by now you probably grasp are In The Family. (I am 12.5 years sober.) Though my sister, as far as I know, hasn’t had a drop of alcohol since May, 2021 (the crash), we all know what that means for people like me and her: Dry drunk.
The methods my sister uses for not facing reality are twofold: Talking incessantly about superficial things so she never has to engage in anything of depth; and, my favorite, and I suppose we might call it an American pastime: Denial.
Enter my father.
My sister has been absent from this whole scenario with my dad. Despite the fact that I was living 3,000 miles across the country from my folks, and she lived just one hour away from them, she couldn’t be bothered to see him, call him, inquire, etc. Nothing. Or, to be fair, almost nothing. Worse, the few times she and my brother-in-law and their kids did come over, and my father happened to look decent, she mocked us, kidding us lightly, saying things like, You guys acted like he was doing really badly. He looks fine!
This was the worst, nastiest kind of gaslighting. She was able to distance herself from it and pretend it wasn’t happening, and then make it seem like we were crazy. Thinking about the likely near-future death of the man who’d raised her as a father was just too inconvenient…and so she decided (if it was even conscious) that it simply wasn’t happening.
Throughout the past 1.9 year(s), months would go by and I wouldn’t hear a peep from my sister. Then she’d text suddenly when some holiday was coming up. Here and there she’d ask about my dad, but she always either didn’t respond to what I said, or downplayed the seriousness of it. When my niece—now doing fantastically well, on medication, doing therapy and a freshman at U.C. Davis—visited my folks and I at the house last year and dad once again looked decent, she reported this back to my sister and once again we were lightly mocked, my sister once more insisting that my father was totally fine. As if we were making it all up out of thin air. As if the whole thing were some fantasy, some drama we’d concocted out of whole cloth. As if I’d left my Dream City for fun. As if I were enduring the rancid, chaffing loneliness which seemed to drown out my sanity on a daily basis. As if running around all day picking up meds, carrying things up and down stairs, getting groceries, walking dogs, going to doctors’ appointments, etc etc etc as what we in fact wanted to be doing.
*
And this brings us to now. Early April, 2023. I made it to 40, first off, which, if you knew more about my past (especially my teens and twenties) you’d think was incredible. (And it is.) I’m engaged to be married to a beautiful, soulful, complex woman who I cherish beyond words. I no longer feel lonely. She and I live together an hour north of Santa Barbara. I visit my folks twice a week when I’m in town to walk dogs, which I do along with writing and editing.
My sister, of course, has mostly been silent and absent. We did Christmas down at her place. My father scrounged up all his strength and came with us but it nearly killed him; it took several days for him to recover. Once, my sister and brother-in-law came up and saw my dad in the hospital, and once they came to briefly visit them/us at the house for two hours. My sister didn’t even have the courage to hug my father, let alone ask him directly what his experience had been like.
Recently, she messaged me about doing Easter down at her place near LA. I told her Dad was in the ER again, and wasn’t doing well. The past month, really, hasn’t been good for my dad: Bad sleep; ruthless, wet coughing; low energy; Myasthenia Gravis symptoms returning; vomiting on and off; etc. Besides everything else he’s been through the past 18 months, he also started oral chemo a couple months ago. The vomiting and dizziness and brain fog has largely been a result of that. Good ole Chemo Brain.
But this was something different. His energy almost completely dissipated. The vicissitudes of terminal cancer are wild and many, as anyone who’s been through it or been a caretaker knows, but he was struggling to even get out of bed. The cough grew worse: Rougher, louder, wetter. And he wheezed when he even inhaled now.
Then he fell.
It happened in the bathroom, his bathroom, down the hall and around the corner from his room. My mother wants him to use the bathroom literally 10 feet from his room, but, being both highly stubborn (remember: This is the man who had a terrible wracking cough for a whole year and refused to see a doctor about it) and a creature of habit, he refused, continuing to walk the 100 feet down the hall and around the corner to the bathroom he liked.