When I first moved to Chicago with my limited skill set and education, I got a job painting houses. One of the two bosses, I found out later, had been diagnosed with ALS, or Lou Gehrig‘s disease. He received his diagnosis at just about the same time that I was hired, and I remember noticing a curled hand and some slurred speech.
His name was Ben Byer, he was very active in the Chicago theater scene (I saw him play Elvis at the Steppenwolf Theater once), and he fought hard to the end, even making a documentary about his illness called Indestructible. I’ve known quite a few people who have died, and it always seems to effect me in a different, unpredictable way each time. I was especially struck by the cruelty of ALS, a disease that destroys the physical body while the mind remains sharp and intact throughout.
This is a story that I am particularly proud of, and, for what it’s worth, would like to dedicate it to Ben Byer and to all of those whose lives are touched by ALS. Thanks to Dan at Cellstories for running it.
Stepping out into the parking lot, the sunlight is blinding. The radio said that today’s is the warmest temperature on record for this date in May. I imagine a version of myself – more youthful, less aware – driving home with the windows down, blasting the first Weezer album through shitty factory speakers, singing along at the top of my lungs. Young Self gets home, calls up everyone he knows, and hosts an impromptu early summer barbecue. Real Self is struggling to get the car keys out of the front pocket of his jeans, his hand curled and non-responsive, the keys falling to the dusty pavement below. Real Self kicks the fender, slurs a curseword, and looks around humiliated before retrieving the keys with his good hand. He drives home and calls no one.
Which isn’t to say that I don’t sit home on the couch for hours, cell phone flipped open, almost calling every person I know. I do this. I sit there and sit there, first in the low, warm late afternoon sun, later in the cool purples and blues of twilight, and finally in the sad and lonely light of my phone. I almost call, but don’t know what to say, and each time think that maybe I can fix this, maybe this isn’t forever, maybe they can’t tell. And each time I almost get up to get my laptop, almost check every medical site I can think of, and each time hear the doctor say no known cure at this time, only stopgap measures.
The doctor was so nice, too. It would have been so much easier if he had been an asshole, or if he’d had bad breath. But he was warm, empathetic, and smelled like antibacterial soap, which is comforting, in its way. His eyes were deep pools of sorrow and apology, and I stared into them as he delivered the news, looking as though he were taking from me a boarding pass for a plane he knew would crash.
Back at home, my bladder can hold no more. On the way to the bathroom I wonder how long it will be until I’m no longer able to perform such a simple task. I return, grab the laptop, and find my way to lougehrig.com. There is a picture of The Iron Horse smiling back at me. Dumb motherfucker obviously had no idea what was in store for him when this picture was taken. And then, even though it’s his disease that I’ve contracted, I somehow wind up feeling guilty: I’ve always been a baseball fan, but never knew that Gehrig was Number 4. Feeling now somewhat connected to the man, this seems like vital information. I watch his farewell speech over and over, struck by the hyperbole of terms like “bad break” and “luckiest man on the face of the earth.” I feel sick.
I stare off and eventually focus on the ceiling fan above me. I allow my eyes to follow the blades as they spin, and then to get lost in them, and for a moment I’m tricked into thinking that the motion has reversed, but then everything comes back into focus and it’s a trick I can’t sustain. I do this again and again, losing myself in the illusion, waiting and watching as the laws of physics are suspended and righted, lost and found.
I want a knife or a laser or a time machine, something to extract the reality of the moment somehow, to make it unreal. It definitely feels unreal. I want to lay on the floor and open my mouth, vomiting out all of the sickness until there is no trace left. I want to be eight again, playing baseball with my friends in the vacant lot across the street from my house, the sun casting long shadows across our improvised home plate. I want to go back and live inside that moment forever, fully appreciating it as I do.
I want to run, physically sprinting through the darkened streets of my neighborhood, and begin to pace around, looking for my running shoes, my keys. When I finally find my keys, I decide the running idea is stupid and that I should just drive and drive and drive, maybe north to the Iron Range and Canada and the frozen Arctic Circle, maybe south to Mexico, but somewhere, anywhere else, to a place where none of this is happening.
Something in my brain clicks and I realize that I might be having a panic attack, veins awash with adrenaline and the sound of my pounding heart fills the chambers of my skull. I know this is unhealthy, remembering the time in college I punched through a dorm wall and had to pay a fine. I stop and breathe, my head between my knees, and finally, weak and ashamed, collapse onto the couch.
On TV there is a movie starring a man who is not George Burns, but should have been. He has been told that he has seven days to live, and must choose how best to spend them. It’s a movie I remember seeing some long ago Saturday afternoon in my dad’s basement as a kid. Not-George-Burns is in the capitals of Europe, the beaches of South America. He is with family, at the fourth birthday of a grandson. He is skydiving. He is not, this man that should be George Burns, concerning himself with the relative merits of taking massive amounts of antioxidants versus acupuncture and/or stem cell transplants as safeguards against the rapid degeneration of his body. Instead, this very forgettable actor is all smiles, checking off items on a list with smug satisfaction. I drink a lot of whiskey while I watch, stepping outside of myself as I do. I wonder how loss of physical control due to intoxication compares with the death of motor neurons that control voluntary movement. I wish my mind would shut the fuck up. I fall asleep before the movie ends.
My friend Brandon calls about an hour later. For a brief moment, I forget everything. Then, without thinking, I lay it all on the table.
“I’m dying, Brandon.”
“Yeah, we all are. Hey, those Twins tickets you got, were those for the sixteenth or seventeenth? I can’t remember and I need to put in for the time off work.”
I let it go. Brandon never really knew how to relate to anyone on much of an emotional level, and as a result, we were never really that close, but I think we both accept the friendship for what it is: we might go to a ballgame, get some drinks, help each other move, but it isn’t the kind of friendship either of us are expected to bring our feelings to. I have other people for that, and don’t lose a lot of sleep wondering whether or not Brandon does.
“The seventeenth. They were for the seventeenth.”
The idea of having tickets for something, standing plans of any kind, is strange. I’m still kind of lost in a whiskey fog, trying to follow Brandon’s story about a car accident, a spinout on 394 during the last snowstorm of the winter, but I still feel somehow as though I’ve already died, this afternoon, at the doctor’s office. The truth is, I’m still very much alive, very capable of going to a baseball game, and probably will, but after I hang up the phone I’m alone again with a treacherous body whose betrayal has already begun en masse. I want to be able to seriously consider suicide, and really do weigh the pros and cons of each method. In the end I can’t decide on one. I’m scared of what I might do in my state.
I get up and pace the apartment, unsure of where I’m going or for what purpose. I’m enraged, but quickly lose steam and make my way to my bed, where I sob and sob in a snotty, messy heap. I let loose, crying from somewhere deep within my chest, a place I haven’t accessed since my parents’ divorce. I was in the second grade. I cry until I can’t, and fall asleep, sideways and uncovered, just like in the old days, imagining again the disease leaving my body.
At some point I make my way under the blankets. Dawn creeps slowly and softly into my room not long after. It comes without fanfare or invitation and just sits, like a stranger watching me sleep. At a certain point it’s too much. I get up.
The sky is blue like a robin’s egg, or a flame, promising another unseasonably warm day. My mind races as I begin to plan, but it doesn’t take long for me to realize this will be my first day living with the knowledge that – in a very real and not very metaphysical way – I am dying.
The first thought something might be wrong I was at work at the group home, bouncing a dodgeball down a long hallway. The hallway smelled like Folgers and copy toner. I remember thinking that it was the hallway for stinky black powders, and began to sniff the air for dirt and gunpowder. Terry, one of my clients, shot the ball back at me with all of his considerable strength – Terry could never play an actual basketball game, but I’ve seen him sink ten three-pointers in a row before, it’s really something – and as I went to block it I found I couldn’t fully open my right hand. I’ve since learned to do this, though it takes time and the help of my left hand. That day, though, the ball struck my hand, jamming my ring finger, ricocheting into Betsy’s head. She was seated nearby in her wheelchair, and she began to wail. Betsy is sort of medically fragile, and so I still feel terrible for having her seated so near our game, and worse still for my inability to catch a stupid dodge ball.
That was the first day I wondered. After fawning over Betsy, apologizing more than was probably necessary (let’s be honest – she’s always wailing about something), I walked outside to schedule a doctor’s appointment.
It was one of these late spring snowstorms. Big, slow flakes that don’t mean any harm, don’t want to bother anyone, just want to bring a little quiet into the world. It was barely cold enough to snow, and I was fairly happy to be away from the noise of the group home. I got the clinic’s recorded message right away. As I waited on the line, I remembered hearing somewhere that Frank Capra had corn flakes painted white to mimic snow in It’s a Wonderful Life. I tried to imagine cornflakes falling out of the sky, and just couldn’t picture it. I remember wishing that I could fall into the illusion of black and white film.
Brandon and I managed to cop some pretty good seats for the Twins game. I had forgotten about this until today, but here we are, lower level, five rows back, right along the first base line. It’s the last season they’ll play in the Metrodome, the only ballpark I’ve ever seen a baseball game in. I remember my dad used to talk about the old Metropolitan Stadium, the Met, where the Mall of America is now. “That was real baseball,” he used to say, “this indoor shit is ridiculous.” I’m trying to explain this to Brandon, about how my dad was kind of a badass. I go into this whole thing about how the original home plate is supposed to be somewhere in the mall, but I’ve never been able to find it.
“Dude, are you drunk already? We just got here – that’s not your first beer?” I realize I’ve been slurring my speech; I have been all day. I’ve also been talking a lot, about anything, because whenever I stop, all I can think about is how bad off I am. And then – and I know this is terrible, I can’t help it – I lay it all out for Brandon, right there during batting practice while Justin Morneau fires rocket after rocket into the cheap seats. I’m yelling, and pretty soon I’m sobbing, and poor Brandon has no clue what to do. He just sits and stares into an empty beer cup that’s half-filled with spent sunflower seeds.
I get up and walk outside and sit on the steps of the Dome. There are people everywhere, which almost makes it easier to be by myself. Brandon, predictably, stays and watches the game. I sit and watch Twins fans walking back and forth, keeping my body as still as I can, not saying anything to anyone, just trying to feel it. I sit there for hours, feeling my mind working while my body does nothing. Occasionally I can hear the cheering crowd through the Dome’s fiberglass roof. I want to sit there for months, years, however long it takes. I don’t want to get up, to ever walk again, because I know there will come a time where that won’t work, where I will fall, where it will all fall down. It will be me in the group home, in hospice, in the ground. It’s all too much to take.
Across the street I see a homeless man I recognize as a downtown fixture. He’s been hanging around for as long as I can remember, charging passersby a fee to sign his trenchcoat. I assume this is how he supports his crack habit, though I’m not sure, and that’s probably not fair. I sit and see this man, quite convinced that he will still be here long after I’ve gone, still facing the reality of his situation in the most practical way he knows how. I wonder if either of us will get to see a game in the new stadium, imagining us drunk in the box seats at a Sox game, booing A. J. Pierzynski and high-fiving after a Joe Mauer homerun.