Lately, since I moved in with my girlfriend in Lompoc six-ish weeks ago, I’ve been visiting my parents in Santa Barbara twice a week, on Wednesdays and Fridays. These are the two days each week I drive the 50 minutes south to walk/house-sit for my dog clients. Usually by the time I end up at my folks’, in the later afternoon, I am exhausted from being out in the hot sun pulling and tugging large dogs, and driving around town from client to client.
My most recent visit to see my folks was yesterday. My father is not doing well. It’s amazing how much his body has been through the past 18 months. Despite the second brain tumor, and the cancer in his lungs, he is still here, 77 years old, ancient-seeming, red-faced and hunched.
He’s been on an oral chemo regiment for the past few months: Five days on, three weeks off; rinse, repeat. The chemo has not been fun for him. Last time there was a weeks-long delayed lag wherein after taking the meds he started vomiting badly, and also had diarrhea, foggy-brain, and almost totalizing exhaustion. Believe it or not, the man—God bless him—is still working. (Remotely, of course, on his computer, and only 10-15 hours per week at best.) Work is everything for him. This work-ethic is a generational phenomenon, more or less. Gen X has some of its residue, my [Millennial] generation almost none, and Gen Z certainly is in the negative numbers in this respect. (Broadly-speaking, I mean.)
Besides the chemo he recently did 15 radiation treatments in 15 days, bam boom bam, just like that, machine-gun fire-like. But it’s the chemo, really, that has whipped his spirit.
The scary thing is this: Some of his Myasthenia Gravis (MG) symptoms are returning. A little context/backstory. Dad was diagnosed with Stage 4 Melanoma in July, 2021. I’d been on my first California visit in 18 months, from Manhattan. I never returned to New York. Anyway: By October, three months post-diagnosis, and literally on he and my mother’s five-years-apart-but-on-the-same-day birthday, October 8th, he stopped being able to swallow. Symptoms had begun weeks before this: Droopy eyes; slightly slurred speech; less than perfect swallowing; bad coughing.
The oncologist had warned us ahead of the immunotherapy treatments, of which there were two, one of which had been band-new when we began treatment in September, 2021. There was a very minor possibility, the oncologist had stipulated, of getting some grotesque kind of side effect, MG being one potential. He assured us again that this was very, very unlikely.
Well, my father turned out to be one of the Unlucky Few. He got a nasty, severe case of MG. It’s an autoimmune, neuromuscular disorder wherein your muscles slowly weaken throughout the body; eventually, if unchecked, it often weakens the muscles, including breathing ability, to the point of non-function. At this juncture it’s called Myasthenia Crisis. Most people become intubated at this point and usually die.
My father developed bad MG. He was hospitalized several times. Several ER trips occurred. He nearly choked many times. (I literally saved his life once when he almost choked on an ice cube.) At its zenith he was nearly blind; he could not swallow at all (we had to get a peg-tube surgically inserted into his stomach so he could eat); his speech was unintelligible and had to be written down.
Around February, 2022, the condition thankfully started improving, and by April he was more or less “back to normal,” though still with terminal cancer, of course. Whack-a-mole, people.
So anyway: Here we are, in mid-March of 2023, a year and eight months post-diagnosis, and after everything he’s been through, he’s now exhibiting early MG symptoms again. Nothing crazy yet. Droopy eyes. Less swallowing. (He is still physically eating by mouth though, so far, but less so.) His speech sounds higher than normal and is a little off-kilter.
I’m scared for him. The whole thing is hard. My mom carries a mix of anger (at him for having had his bad cough for a year and not going to the doctor, which could have prevented this late stage of cancer to begin with; these were supposed to be their “Twilight Years” together, full of lovely Santa Barbara views, love and travel); depression; fear; loneliness; deep empathy; incredible sadness. I feel for her. She’s losing the man she’s been with for almost half a century. They were married in their twenties in the 1970s, for Christ Sakes.
The worst thing that could happen is for Dad to suffer at the brutal, ruthless hands of MG yet again before being shoved off into The Shadow Land of death. He seems to be slipping in that direction. Life, my friends, is not fair. Perhaps he won’t slide all the way into it quite yet. We’ll see. I hope and pray.
Either way, yesterday the three of us—my parents and I—sat in the living room and discussed the cold, clinical topic of finances after my father passes. It was not a pleasant conversation. We discussed getting a financial advisor. All my life my father has handled the money for he and my mother; their assets; IRA accounts; pensions; taxes; etc. But he is slipping from our grasp. He won’t be in this role for too much longer. Six months? A year? Who knows. I’ve been wondering this and fearing this for the past 1.8 years, honestly. He’s lasted longer than I expected.
I’ve been driving my father’s 2018 Nissan all-electric Leaf. The car is still titled to him. Just six months back he talked about one day soon driving again. Now he says we need to transfer the title to me. He gave away his camping and backpacking gear last year; for decades he and I backpacked in the mountains of Ojai, 90 miles northeast of Los Angeles, where I was born and raised. Next it’s the finances. They let me know I’ll be getting more inheritance than my sister. We were previously 50/50. But she’s been completely in denial, selfish and absent for this entire 1.8-year-long Hero’s Journey. I feel mixed about their choice. But ultimately it is their choice.
Sitting with them yesterday early evening was hard in many ways. It was an unusual evening. Usually I stop by for an hour and a half or so and then head back to Lompoc and Britney. This time I stayed with them for several hours. We had dinner and watched the latest episode of Bill Maher. It was like “old times” seven months ago and before, pre-Britney and when I still lived ten minutes away in Santa Barbara. It was nice, of course. But it was also painful to have that discussion. (Necessary as it was.) There was also that old, odd, strained tension between my father and me.
While my mom made us dinner in the kitchen across the house, Dad and I, in near darkness by then, the sparkling gold lights of downtown Santa Barbara shimmering out the living room’s floor-to-ceiling windows, sat in silence. My father was once a professor of chemistry and math, first at a college and then at an all-boys prep school. He’s a classic politically-moderate Baby Boomer. Born in 1945 in New Jersey, he’s 37 years my senior. And the two generations—Millennials and Boomers—could not be further stretched apart. Intelligent and arrogant, sophisticated yet uncultured, well-read but not a traveler, my father has always been a man I could not understand. We love each other unconditionally. But we’ve never understood one another. He’s always treated me as a sort of hyperbolic cultural anarchist, an intense weirdo artist, and to some degree a semi-smart idiot. I’ve always seen him as wildly intelligent, intimidatingly confident, weak as a man and father, and hopelessly myopic.
After I got sober from alcoholism in 2010 I made amends to many people, my parents included. We have mended our bridges. We’re good. And yet, I still feel like the man is such a mystery. I still have so much I’d like, in theory, to say to him. Questions I’d love to ask him. Yearnings I’d love to have explained. But I don’t know how to do this. He doesn’t either. And so we sat there in the darkness, not talking. A few times I repeated questions I’d already asked: About his new MG symptoms; about what his doctor said; about his next MRI or lung scan; about the book he and my mother are listening to together. We briefly discussed my girlfriend; our cats; their dogs; politics. There’s nothing wrong with discussing these things but they’re all superficial; skin-deep. The man is dying. Who frankly gives a fuck about the basics. Let’s get real. For the first time in our shared lives let’s tell the truth; the honest, deep, real, gritty, righteous truth.
But I know this won’t happen. This isn’t how my father operates. He’s a man of classical stoicism. Silence. Averted eyes. Crossed legs, knee over knee. His existence circles around clinical distance and detachment; mine is the precise opposite. I live for realism; depth; vulnerability; I wear my sensitive heart on my sleeve.
And so finally I let go; I allowed the darkness and the silence to gracefully swallow us up.
*
On the 50-minute drive home along U.S. Highway 101 and then Highway 1—the road empty, trying to listen to my Michael Shelden George Orwell biography—I suddenly felt several rushes of emotion pulse through my whole body. Through my soul, perhaps, as if a hand were gripping my heart like a vice. It reminded me of seeing my ex-girlfriend eight months after she’d left me, at the Berkeley Marina, in September, 2018, how I sat on a rock by the water after she left and sighed, the wind rushing through, saying to myself, Goodbye. That deep, raw sadness. That impending grief. That sensation of the ultimate letting go. The release of pain into the self, into the void, into the Netherlands of the torturous and inevitable human condition.
I turned the volume off on the audiobook. The road was empty before me, the white lines and rumble-strips on either side, the thick yellow lines with the black center between. I felt tears brewing but I didn’t cry. Not for any reason, I just didn’t want to. Not right then. Later, I told myself.
I thought, Goodbye, Dad. Even though he’s still here. He’s not gone yet. But he will be soon enough. These are the layers, the levels of grief. Letting go. Saying goodbye. Accepting the temporary reality of existence. Looking into the yawning jaws of death and saying “okay.” Releasing the illusion of control. Here it is: The ineradicable, inexhaustible Truth. Life ends.
I'm sorry you're all in this situation. All I can say is strength to you.
This says as much about you as a man as it does about your Dad and of course the unfairness of life. Keep your lamps trimmed and burning.....this is so full of depth, love while of course resonating pain. I see more clearly your theme of incompatibility but intellect easily surmounts that artful thematic boundary. Keep r goin'......