*Sherman Alexie, National Book Award winning author of such books as “The Lone Ranger and Tonto Fistfight in Heaven” and “War Dances” wrote a brilliant, touching poem inspired by my recent post about my father’s impending death.
Click HERE to read Alexie’s poem.
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Let me take you through a typical hospital day for me and my mom. My mother’s house—I now call it ‘my mother’s house’ instead of my parents’ house—is ten minutes’ drive from Santa Barbara Cottage Hospital. We get up early—around 6am—and each stay in our own section of the two-story, 2,500 square-foot house. The house, which they moved into in the middle of the pandemic chaos of 2020, sits atop a hill in the prestigious, lovely Riviera. There’s a gorgeous view from their deck of the city below: Santa Barbara High School; the elementary school with its green trimmed football field; Highway 101 slashing like a knife across it all; the piers and boardwalk and beaches and of course the shimmering blue sea. Above it all the golden-yellow sun gleams down upon us like heroic Southern California kings.
By around 8am, plus or minus, we stagger down the steep stone steps to the short driveway. We get into my father’s 2018 black all-electric Leaf, my car now by default. When I arrived here in June, 2021, from Manhattan, I didn’t have a car; stupidly, not having known the future (aka Covid, Dad’s cancer) I had sold it. So now this was my car. Once, six months ago, Dad had told himself a fairly compelling (but probably not realistic, even then) story that he’d one day drive that car once more. He imagined, back then, that things might possibly, maybe, somehow go back to “normal.” That was six months—a decade—ago. Things have changed.
Enclosed in the Leaf, windows in front down just a few inches to let the cool air in, I backup, straighten out, and push us along their small, narrow road and then down the winding, sharp-turned road leading us eventually down to regular civilization, aka Milpas Avenue.
From there—the two of us usually silent—we weave down Anapamu until taking a right on either Garden or Bath, depending on my mood. Garden is probably faster, a bigger, speedier choice. Bath is slower, perhaps, but quieter and softer, more suburban than small city feel.
Either way, we eventually make it to Pueblo, the street Cottage is on. I have to pause at several cross streets, waiting for impatient cars to pass. And then we arrive at the parking garage across the street from the hospital. For the past year-and-a-half-plus—since fall 2021—my mom and I have had a rather intimate relationship, or connection might be the stronger word here, with Cottage. In that time Dad has ended up here, what, four, five times? Six? I’m not exactly sure. Sometimes he’s ended up in Cottage for two or three days; sometimes for over a week or longer. So far, as of April 13th, he’s been here ten days. He’ll stay at least through the weekend as well, given that he’s still on oxygen assistance (but down from 15% to 2% assistance, which is great) and given that the oncologist wants to start the immunotherapy treatments asap, likely on Monday, which he wants to do with my father still in the hospital.
His lung tumor is growing profoundly aggressively. We know, almost with total certainty, his Myasthenia Gravis symptoms will return with the treatment, and this will make his breathing a struggle once again. We’re playing a sinister, perhaps permanent game of Whack-a-Mole: Skip the immunotherapy and the tumor will eat him from the inside out, and fast; do the therapy and he might have to be intubated and never recover. We have to play the odds. We don’t have a choice. Not really.
My mom and I get out of the car and walk, either down the stairs if we’re up at the top of the parking garage (if it’s very full) or else down on the ground-level. We trudge across Pueblo to Cottage. Cottage is a massive, beautiful building, wide and deep and tall. A magnificent monument to medicine. There is a semi-circle driveway in the front entrance area and vans pick people up in wheelchairs. Young tall men who work for the hospital greet you with a smile, standing behind high podium-like desks outside. We snatch yellow or blue face masks—it’s like we’re in the depths of Covid again, 2020—and enter the building.
Each time we come, we have to walk to the front desk and register. Routine. Safety. Protocol. Over and over again, and they’re somehow always surprised to see us, as if it’s their very first time, despite the fact that we’ve seen these faces so many times we have them memorized, burned in our brains. We tell them who we’re here to see, give them our first and last names, they snap a digital photo of us, they ask us if we’ve been in the room before and if we know how to get there, we smile and nod and say yes, bored and semi-annoyed, and then they print the orange nametags and we stick them onto our shirts and move past the guards.
Then we walk down the long hallways, our shoes slipping on the smooth, polished white linoleum. Along the walls are windows on one side, showcasing outdoor tables and chairs, a few scattered employees and visitors sitting around lazily, and on the other side of the hallway there are dozens of blown-up-to-poster-size photos of the history of the hospital, and medical advertisements. Walking these halls forces me to remember seeing my teenage niece in Children’s Hospital in Hollywood, early June, 2021, after her nasty, brutal car crash, with my cousin, those same long hallways, the same squeaky linoleum floors. It makes me remember seeing her, her blue eyes and baby face, her good-natured smile and ringing laughter, the bed and large hospital room windows, rising buildings beyond, and she the whole time on suicide watch.
A right, a right and then a brief, quick left. There’s his room. We nod to the nurses behind their station, which is conveniently—and sometimes annoyingly, due to their loud laughter and gossipy noise—ten feet from my father’s room. We gown up: Due to his pneumonia and sepsis and parainfluenza and his lung tumor, we have to wear thin plastic blue trash-bag gowns, covering our torsos, our arms slipping through the thin blue plastic sleeves. And then wear masks. And also purple thin latex gloves. I always feel like I’m a doctor or a male nurse. Like I work there. Like I’m just observing my father, a sick old 77-year-old man on the cusp of expiration.
Until we walk in.
Then he’s there, amidst all the machinery and tubes sticking into and out of him, the tubes supplying oxygen sticking inside of his nostrils, his thin white gown, his yellow-socked feet sticking out from the beige hospital sheets. There, like my niece 18 months prior, with his blue eyes. With his stubby, unshaven face. The desk sits next to his bed, two containers for urine hanging from the attached bar. Closer to the door stands the computer monitor which the nurses check for medicines given, water and liquid food required, etc. Nurses come in and out while we sit and chat with dad. People walk in to clean out the trash and recycling. A little gray bin fills to absurdly overflowing with the torn-off blue trash bag overcoats we all have to wear. Plastic: What did they do in hospitals before plastic?
We’ve gotten to know most of the nurses. I like Shane the best: Mid-late 30s, I’d guess, buzzed head, short, strong, kind, very efficient. Sometimes we know how to use the liquid feeding tube better than the nurses do; we’ve become experts over the past year-and-a-half doing it at home. Occasionally we get lucky and catch the doctor, the “hospitalist,” the pulmonologist, etc. Rarely we catch the oncologist; usually he sneaks by very early and says hello to my father for a minute or two and then disappears into the mist of mystery again.
My mom and I grasp that we are part of something much bigger than we are: A system; a bureaucracy; the healthcare and medical and hospital world. Things are done under the surface; decisions are made without our awareness in many cases. Things just sort of “happen.” We have learned to advocate for ourselves, ask pertinent questions, make phone calls, go the extra mile, even “do our own research” as much as feasible, while of course in the end bending to the professional and expert suggestions of the doctors. Twice we’ve pushed the oncologist to make choices he didn’t want to make, and we were correct: Once, we complained about my father seeming “off” and “foggy-brained.” The oncologist dismissed it but we pushed him to sign off on another brain MRI. Sure enough, the tumor in his brain had been growing. Trust the experts…but don’t turn your brain off. That’s the lesson we learned.
Mom and I chat with Dad. Generally he is quiet, talking as little as possible. When my mom asks him important questions about things like, say, taxes, or financial information they’ve yet to fully discuss, he generally waves her off, not interested. This is extremely rare for my father. He’s always been the provider, an intense practical man. More on this side of my father, HERE.
But no more. My old man is weak. Tired. Profoundly exhausted. Spiritually exhausted. He’s been slowly disengaging more and more with people, places and things around him, growing closer to the light, to the Other Side than our side. Our side consists of paying property taxes and walking the dogs and my wedding plans and travel plans and my Substack, and my mom’s art lecture talks and dinner plans, etc; all the stuff of alive, warm-blooded, normal humans. But my father is not longer fully of that realm. He has not yet passed over to the other realm…he is simply caught somewhere in the middle. But closer to that other place.
We often talk amongst ourselves, my mom and I, when my dad inevitably closes his eyes and sleeps a little, on and off. Nurses continue to come and go softly, a background noise. Sitting there, it often feels to me like I’m living in some strange, bizarre in-between land, neither here nor there. It reminds me of when the Covid lockdowns first came, in mid-March, 2020. I was living in a rough Wild West part of Harlem, in Manhattan. Everything felt dark and blurry, not quite fully real, as if we were all acting in some global, delusional movie. (Click HERE to read my book about my NYC Covid experience.) It felt like theatre, or like film, only no one knew where the film was going, or how it’d end. We do know this movie, with my father, though, and where it’s going and how it’ll end…just not exactly what it’ll precisely look like and exactly when it’ll end; a week, two weeks, a month, eight weeks?
We chat with Dad a bit more when he opens his eyes, big bright blue eyes, almost transparent, like his mother, my grandma who died at almost 95, in 2009. Back then I was a year shy of getting sober, and going to San Francisco State University for the first time, studying writing. I remember sitting on the trimmed green grass lawn that afternoon when my mom called and told me the news of my grandmother’s death. I remember the sun gleaming down on me while I sat on that cold trimmed grass, a chilly day in February. I was 26 years old.
Sometimes, we play a podcast that my dad enjoys, Yesterday, for example, we listened to Coleman Hughes’s interview with Neil DeGrasse Tyson. My father is a man of science, math, chemistry. He taught all three back in the day, in the 70s and 80s, both at a Ventura community college and at an all-boys Ojai prep high school. This was before he became a computer scientist. My father has two master’s degrees. He went to U.C. Berkeley, then Cal Tech, then UCSB. He is a wildly intelligent man.
After a few hours, we leave. I walk up to my father, lying in his hospital bed, and I grin at him, and I place my purple latex-gloved palm on his thin, bruised (from all the tubes and injections) arm and I hold it for a moment and I look deeply into his big blue eyes and I say, I love you, Dad. He looks back up at me and he says, soft, quiet, I love you, too, Michael.
Then my mom gently hugs and kisses her man of half a century, kisses him right on the lips, and we stand near the door finally, tearing our blue plastic trash bags off, stuffing them into the overflowing gray bin. Then we step outside and let the door to his room fall closed with a light clang. We wash our hands with antiseptic. We nod to the nurses at the station. They say goodbye. We adjust our facemasks. We walk to our right, halfway down a narrow hallway, and out a side door. Ahhhh; outside. Finally. At last. Fresh air. Sunshine. Freedom. A freedom my father doesn’t get to enjoy anymore.
We walk, silent, down Pueblo after exiting through the thick metal gate which shuts with a loud thundering clunk after us. We find the car. Get in. Turn around. Drive out past the kiosk, showing the guy our visitors’ badge. He lets us through. I take us down a block to Los Olivos so we can go “the back way” home, a la Alamo Padre Serra, with its glorious, stupendous, staggering views of Santa Barbara below. We don’t talk. The windows are down an inch or two letting in the cool rushing air. I know in that moment that we’re leaving my father, and that he’s leaving us. And that is all I need to know.
We wind back down, above the house still, until we arrive back at their little short road. My mother’s house. My mother’s. I park. We get out. We walk up the steep stone steps. Unlock the thick glass front door.
We enter.
the approach of death as you are meeting head on has its rewards as you take time to excavate appreciation of this life your own seemingly held in limbo, hostage yet (incompatibly?) oddly enough given its gruelling toll... empowering take care
Virtual hugs to you and your loved ones. Alas, we have a Russian saying that is very appropriate for the situation, "Trust, but check." You always have to make sure they don't neglect something that could lead to something worse. I've been there, and I've heard from others too. Thank you so much for recommending me! I appreciate you greatly!