January 14, 2019T
his one moment now plays on a loop in my mind: I’m dripping sweat, walking off the court with my dad, who sits on the wooden bleachers and gives me a quick low five.
I am 12 years old in the memory. And I am also 15, and 19, and 23 and 34.
My mind has created an amalgamation of this interaction, which happened thousands of times across 25 years. Three decades of father-daughter low fives compressed into a single loop, dense and potent, an emotional black hole threatening to implode my heart.
When I was growing up in Schenectady, New York, my dad and I used to play pickup in the rec center at Union College. We’d also play at the JCC off Balltown Road, Hillside Elementary, Van Antwerp Middle School, and a dozen other gyms in the area. My dad had played Division I at Colgate University, then professionally overseas in France, and I followed suit — first at Colorado, then in Ireland — so you can imagine we were an effective duo. You can also imagine how many pickup games we won over the years, how many quick low fives we shared walking to the water fountain between games.Three decades of father-daughter low fives compressed into a single loop.
We haven’t played together in three years, but just this morning we exchanged another low five. He was in his chair in the living room of our house in Schenectady, his breathing machine next to him. I said good morning and held out my palm. I watched him slowly lift his forearm and force his hand to slap mine. When I’m home, we low-five numerous times a day. And each time, I try to black out the current surroundings — my parents’ living room, the small side table next to his chair — and force them to melt away. I imagine I’m stepping off the court with him and we’ve just won a game. Each time, I try to remember what that felt like: playing hoops with my dad, this wonderful thing we did together.
In those moments, my superpower is time travel. I steal something essential from the past, wrench it into the present.
Impossible though, the holding on.
Courtesy of Kate Fagan
My dad doesn’t know this is what I picture — our life together playing hoops — each time our hands meet. Well, he does now, because he will read this essay. And he’ll be particularly upset at this next sentence — as am I. As are my mom and sister.
My dad has ALS.
It’s not just the existence of ALS he’s upset about; it’s also the fact that now I’ve written it down. As if the words themselves, not the malfunctioning of his motor neurons, are to blame.
This kind of reverence for spoken ideas isn’t unusual. Many of us believe we can speak things into existence. We think that if we say our hopes aloud, the universe might just conspire to help us. And so, conversely, we worry that if we name our gravest fear, the thing we desperately hope isn’t true … well, what will the universe do with that energy? (Nothing good, my dad imagines.)
Or, more to the point: What if there is a 0.1% chance my dad doesn’t have ALS, the slightest sliver of daylight? And what if my writing that previous sentence has jarred the universe and cemented his fate?
This is nonsense. And also, it’s not. Then again, I recognize that it’s completely delusional. (But still, it’s not.)
For my dad, this aversion to naming ALS — I think it’s more than respecting cosmic forces. It’s also about what he pictures when someone says those three letters. And what he pictures — a body immobile, a life reliant — is not how he pictures himself. When I think about what my dad “has” the list is long: a great sense of humor, a relentless work ethic, a fantastic outside jumper.
Just the other day he said to me and my mom: “You remember me as a doer, right?”
Fuck you, ALS.
This is the guy who kept a journal of every workout he ever did, who rated each book he read over the last two decades (John Adams biography: three stars; Seabiscuit: five stars), who in 2005 bought an air conditioner in Albany, and then drove down to New York City and installed it simply because my sister had called and said she was miserable, melting inside her shoebox apartment. (There was a heat wave.)
My dad’s also always been superstitious. During NFL games, if the Giants are playing well during the first half, we stay in the same spots for the second. He would wear the same rubber band around his wrist for months if the stock market — he’s a financial advisor — started trending up after he’d first snapped it on. Whenever someone predicts smooth sailing, a traffic-free ride, he cuts in: Stop, you’ll jinx it!
One example of his superstitious nature now crushes me: He hates the basketball hoop he installed in our driveway three years ago. He was 59 years old. (Not young, but not old.) His symptoms started right after the hoop’s installation. So now he sees the rim — sophisticated with its glass backboard, the nicest he’d ever bought — as evidence of his hubris. He had tempted the gods.
I will play this game forever, said that raised hoop.
Oh, we’ll see about that, replied the gods.
Courtesy of Kate Fagan
The idea that he might now look at a basketball hoop with regret feels so inside out. But the truth is, I also hate that hoop. I eye it with suspicion, as if it’s a Trojan horse. My dad brought it into our world, in pursuit of more games, more connection, more low fives. Instead, when we weren’t looking, it released its plague.
How fucking ridiculous does all that sound? About as outlandish as the idea of ALS sounded when the first doctor diagnosed it three years ago. (The chance that someone will get ALS is 0.1%.) And about as ridiculous as getting a disease in which, for some reason — doctors don’t fully understand yet —your muscles gradually shut down in an insidious and relentless spread.
I know we shouldn’t blame the hoop. But we need something to blame. (Grief being the mystery that it is.) So we’ve chosen an inanimate object that, until this point, has represented the very best of life. It’s the ultimate betrayal. Over the years, we’ve shown basketball hoops — so many of them, all over the country — nothing but love: pouring in our time, dreams and made jumpers.
I can’t even tell you how many made jumpers! Ask around, if you must. My dad is one of the best shooters I’ve ever seen. He is smooth off the catch, over either shoulder, off the dribble. He used to give me nuggets of advice. The one that really stuck with me, that I thought about each time I played, was this: Always make your last dribble before you pull up to shoot the hardest. Really pound the ball into the floor, so it bounces right into your shooting pocket and you’re not left reaching for it.
When I stopped playing hoops all the time, I would still think about that piece of advice and try to apply it in other contexts. Make your last dribble your hardest. Don’t leave yourself reaching back, hoping everything works out — make sure you’ve created the proper momentum for your next move.
University of Colorado; Courtesy of Kate FaganNot surprisingly, it was while playing hoops that my dad noticed the first symptoms. He was dropping passes that came to his left hand.
The first I heard him mention ALS was when he was reassuring me that he didn’t have it. He called me while driving home from his doctor, who had taken an MRI of his neck and found spinal compression, thus accounting for the symptoms in his left arm. A good thing, this spinal compression, this impending neck surgery, my dad explained, because an alternative explanation the doctor had floated was ALS.
Holy shit, what?
I was standing outside a post office, pacing, as he told me this. The idea that he almost had ALS, but didn’t, chilled me. When I was a kid, my dad played in a league with a young guy who was diagnosed with ALS. One night a year later, my dad and I and several of his teammates collected him so he could watch a game. From then on, whenever I read or heard about ALS, my mind flashed to an image: My dad and his teammates struggling to maneuver their friend’s wheelchair up the stairs and into the gym.
The neck surgery fixed nothing. The symptoms continued in his left arm, and the doctor changed his mind. He told my mom and dad it was a disease “in the ALS family” (in which none are good, by the way). The first few months, my dad kept playing hoops, even as function in his left arm continued to deteriorate, and I’d anxiously await his call to find out how he’d played, placing too much value on his effectiveness — as if a good night on the court might mean that the doctors were wrong.Obviously, if you’re dominating the local pickup game, you don’t have ALS.
Obviously, if you’re dominating the local pickup game, you don’t have ALS.
Plus, doctors can be wrong. Our healthcare system is a mess. At 0.1%, the probability that his symptoms were being caused by something other than ALS still seemed likely: Lyme disease, a pinched nerve, some other undiagnosed ailment.
Now, a couple of times a week, I drive past that post office and picture myself pacing outside and I wonder if the future had already been decided by then, or if the outcome was still malleable. I wonder if I could have said or done something to create a wrinkle in the universe.
Before my dad’s ALS diagnosis, I didn’t understand Reddit sleuths. How could a group of Reddit users, using the power of crowdsourcing, believe they could solve crimes that even FBI agents couldn’t?
Now I understand: Delusion feels better than impotence. The calmest I’ve felt about my dad’s condition over the last two years was while I was cross-referencing medical papers online. A medical breakthrough, just like a cold case, takes only a new set of eyes, a connection never before noticed. I have, at various moments, convinced myself I’ve found the cure for ALS. Or, at the very least, found some blog post containing insight that we might be able to use to delay the progression of the disease.
Have you heard of the celery juice craze? That sentence might seem like a hard right turn; it’s not. About six months ago, at the behest of the “Medical Medium,” thousands of people started juicing 16 ounces of celery — an entire bunch! — each morning with the promise of miraculous health benefits. Lately, in response to this new dieting obsession, doctors have begun chiming in. Sure, celery is good for you, they say. But no more than other vegetables, and certainly not as a magical elixir.The calmest I’ve felt about my dad’s condition over the last two years is while cross-referencing medical papers online.
This same guy, the Medical Medium, wrote an article on ALS. I can’t speak for how effective any of his other medical insights have been over the years, but when I think about his article on ALS, I want to throw my blender across the room. Here’s a quick sample: “If you’ve been given an ALS diagnosis, try your hardest to stay light hearted and not fall victim to the unproductive label medical research and medical science have placed on a variety of mystery symptoms. The neurological condition you are suffering from is not a death sentence and is something you are fully capable of healing from and moving past.”
(“Stay light hearted” — OMG; “You are fully capable of healing” — WTF.)
I actually kinda bought this shit for a minute. I thought: Maybe ALS is not, as doctors believe, a mysterious accumulation of proteins that erode the body’s ability to communicate with its muscles. Or maybe it is that, but the cause isn’t mysterious. ALS could be due, in part, to toxic metals in the body: cavity fillings, water pollution, synthetic joints, etc. And wouldn’t you know it — my dad has a metal hip!
So the Medical Medium had solved the case! The cause of my dad’s ALS was not our brand new basketball hoop, or speaking the diagnosis out loud. The cause was his surgically implanted hip!
Fear causes people (in this case: me) to become desperate. That desperation leads them (me again) to become less rigorous in their evaluation of medical advice. That’s what happens when a disease has a 100% fatality rate with no effective treatments. (The drug Riluzole may extend life by a few months.) When it comes to ALS, you are literally grasping at straws.
And, in our case, placing them in 12-ounce metal detox smoothies, blended with cilantro, spirulina and Atlantic dulse. None of the ingredients are harmful, but none are particularly helpful, either. And as much as all of us — that is, my family, and every family dealing with ALS — are clamoring for hope, the suggestion that a cup of liquefied wild blueberries could halt this disease’s steady progression is both reckless and cruel.
The smoothies, like the neck surgery before them, didn’t stop the progression of symptoms from my dad’s left arm to his right.
Courtesy of Kate Fagan
One afternoon last spring we took my niece and nephew to a local park in the Adirondacks. My dad was there, my mom, my sister, my brother-in-law. The playground is next to a basketball court and someone had left a basketball sitting in the grass.
I didn’t know my dad was already losing strength in his right shoulder — ALS tends to progress either clockwise or counterclockwise — and so I suggested we go shoot. The day was bright. He seemed reluctant, but eventually I convinced him and we walked over. I bounced him the ball and he corralled it with his right arm. He tried to lift the ball into his shooting pocket, but couldn’t quite do it. He tried to lift the ball toward the rim, but it fell short.
“I can’t do it,” he said. “I can’t shoot.”
(Fuck you, ALS.)
The sky was light blue and the air warm when we both realized he would never again shoot a basketball. I often think now of a story my dad once told me, about when he played professional hoops in Ajaccio, on the island of Corsica. The team camped in the mountains and went for long runs. I would like to time travel back to 1985 and watch my dad sprint up a hill.
I think maybe it’s better to not know you’ll never do something again. And so I wish we hadn’t gone to shoot hoops that day last spring. I was being greedy. I wanted more time on the court with my dad. More connection, more low fives.
Of course now, a year later, lamenting the loss of my dad’s ability to shoot a basketball feels indulgent. I should never have even cared about such a thing.
With ALS, you learn to gradually reevaluate your asks.
The ask three years ago: That the diagnosis be flawed and my dad would live a long and healthy life.
The ask two years ago: That the motor-neuron disease (we weren’t accepting ALS yet) stay only in his left arm for many years — maybe even decades.
The ask six months ago: That the disease (still not ALS, O.K.?) not affect my dad’s breathing.
The ask three months ago: That he continue being able to chew and swallow.
The ask a month ago: That his breathing remain strong enough to insert a feeding tube.
The ask last week: That his weakening voice not leave completely.
The ask this week, directly from him: That before I leave, I come over and let him see me.
That’s when he usually says: “I’m still in here, Katie; it’s still me in here.”
A few nights ago, I decided to make tea. After pouring hot water into the mug, I was returning the electric kettle to its holder when, somehow, the kettle slipped out of my hand and landed on my favorite item in the kitchen: an old dish in the shape of Corsica — a gift from my dad.
The plate broke into three pieces.
The only accurate way to describe what happened next — and who cares if it’s a cliché — is to say that I burst into tears. My wife was sitting on the couch just a few yards away. She popped up.
“Was that the Corsica plate?” she asked, already halfway to the kitchen.
I nodded dramatically. I remember this weird feeling taking over, as if I was performing sadness as much as I was actually sad. And in the next second, I remember wondering how common this feeling was — how much energy grieving people spend wondering how their grief is being interpreted by others? Wondering if they’re “doing it right,” or if it’s justified? Of course, my goal after the plate broke wasn’t to be dramatic; my body was just suddenly incapable of subtle movement. My eyes became big and wet; my head dropped; my shoulders sagged.
The plate had been broken for only a few seconds, but already I’d accepted and rejected the symbolism of its breaking multiple times. (No, the plate does not represent my dad. Well, it kind of feels like it does. A plate is not a person. But things do have energy …)
Eventually I wore myself down and accepted the symbolism — I let the breaking of the plate break me. And there, next to me, appeared my wife to piece me back together. She wrapped me in a hug.
“I’ll fix it,” she said.
“You can’t fix it,” I said.
“We’ll get superglue tomorrow and I’ll fix it,” she said. “You’ll see.”
Unsaid between us: But that’s not really what’s broken.
Courtesy of Kate Fagan
(She knew that, of course. But we must fix what we can — because we can. And so she fixed it. And now our Corsica plate is functional again, with seams of glue, and back in its original spot, to the left of the oven.)
When we were kids, my sister and I were playing indoors with a Nerf football when we inadvertently knocked over an item of my dad’s: a porcelain doll wearing a Colgate University basketball uniform. The doll landed on its head and broke into a hundred pieces.
Worried we had broken something important to him, the two of us spent the rest of the day rebuilding the doll’s head, piecing it together with superglue. When we finished, the head still had a few missing pieces. The doll looked like something out of a horror movie, but still my dad kept it. Not because he had ever really liked it (he hadn’t), but because he was so charmed by our teamwork and perseverance.
Since starting this essay, I’ve been thinking about how obsessed our culture is with scale. If a business or an idea exists only to improve some small corner of its community, then that business has not been ambitious enough. Think bigger, we are told. Think on a mass scale. Our businesses must reach both coasts (then stretch worldwide), and our ideas must be broadcast to millions, or we have aimed too low.
And so I’m aware this is the part of the essay where I’m supposed to stretch for universal themes — to scale my words for the masses. Now is when I should pivot to some larger takeaway. An encouragement for everyone to seize the day, for example, or to live in the moment.
But that’s not why I wrote this.
I wrote this so my dad would know how much I love him. And so he’d know that every low five we share reminds me of the thousands that came before.