"No Reason To Get Excited"
In the morning at home, I’m upstairs medicating. I take a lot of pills, upwards of thirty per day, and each pill does its job, bringing my shaking and tingling, fatigue and pain more-or-less under control, but only cannabis stops the shaking and tingling and fatigue and pain, most of all the pain. I start every morning with THC and medicate as needed throughout the day. I don’t need much, not enough to get high, just enough to get still. I blow smoke, or consume an edible, and stop short of a buzz. Truly, Mary Jane is a medical savant. After five minutes with her, I stop shaking.
I’m at the bong when I hear the piano downstairs. That would be either Tyler or Charlene. Both take weekly piano lessons at a storefront music shop next to a T-Mobile. They get it as an option in their homeschool curriculum. They practice every other afternoon, and when the spirit moves them, like now. The piano is a century-old upright, my grandmother’s, which we inherited, or, had handed down to us is probably more like it, when my sister said she could no longer find space for it in her three-car garage and was going to “get rid of it.” The sounds the piano makes are much as you might expect from a 100-year-old wooden box which has spent its life sitting in one distinct living room, always pampered, never abused, and rarely used. Music from an Antique Age.
Downstairs, the playing is ultra-slow. I try to pick out the melody. It’s familiar but I haven’t heard it played in our house before, meaning over and over and over&over&over. A delicate sound rising from below. A child’s slow and careful touch. Then I hear it, a Chopin etude. I can’t remember which one, there are so many, but it is the unassailable sound of Chopin, the piano’s Keats, slowed waaay down, played accurately. I imagine Tyler at the keyboard. The juxtaposition of his rough-&-ready baseball world with this precise, ¼ speed rendering of a slow tempo etude suddenly wells up in me, overwhelms me. I must grip my jaw to keep from yawping with gladness & grief.
My neurologist tells me such moments of incapacitating emotion or heart-stabbing pathos are common among those of us who daily walk with the demon PD. Such a powerful catharsis. How can it be the symptom of a disease? Throughout my adult life, I’ve tried to feel more emotion, open up more, respond more to art & people, and love. Now, almost daily, I am overcome by emotion. It’s too much. I pull a handkerchief from my back pocket and wipe my eyes, put on sunglasses, go downstairs and discover it is not Tyler but Charlene playing Chopin. Char doesn’t talk a lot, though she is quick, perceptive and smart. She makes herself clear in other ways, with her art, her music, her dancing, her helpful, caring ways. Oh, Charlene, how beauteous is thy pianism!
There’s this drug I take each day, Amantadine, six easy-to-swallow yellow submarines, two at a time, 7a-11p. Designed to prevent the A-virus flu, Amantadine was at first a bust. It had too many holes in its flu catcher and could not prevent you from catching other types of flu, the B-virus, for instance. What’s the difference? It won’t matter to you when you are caught in its grip – A or B – when every muscle aches, every movement is an effort, every nerve of your skin cries out in scorched agony, kinda like an Off day with PD.
Before this alleged flu killer went the way of countless failed experiments before it, researchers discovered Amantadine was far better at stopping tremor, especially for those tremorers whose tremors are caused by PD.
Soon, doctors began prescribing the drug for people like me. My assessment of Amantadine is that it’s fine. It calms the tremor in my left leg and arm enough for me to sleep two or three hours.
But Amantadine soon reveals its complicated core. I must take more and more yellow submarines to calm the subsurface tremor. The more Amantadine I take, the more I am visited by hallucinations. Hallucinations? That’s crazy talk. You see, these are not the screaming-meany hallucinations you see in horror films. They are benign hallucinations, fleeting, such as noticing a person on the periphery of my vision, maybe even someone I know, and looking and seeing no one there. Once, entering our bedroom in the dark, I told Jen I distinctly saw four little people tied together at the waist by a rope, walking toward the closet. She said she didn’t see anything. The tallest of the four, in front, a young man, came up to about my knees.
“Yer s-s-sure you can’t see’m?”
She looked again (bless her heart).
“No, of course you can’t, they’re only in my eyes.” I laughed in revelation.
Each day I try to strike a balance with Amantadine, but some days it comes down to a choice between shaking or tripping.
Char and I are about to set out on a bike ride around our cul-de-sac neighborhood. A bonding op. I have not been on a bike in a while, months, no, years, but that doesn’t mean I cannot bike with Char. Used to be, I didn’t just ride a bike, I wore it.
Suddenly, Charlene needs a helmet adjustment. She gets off her bike (pink with white trim) and runs back inside the house to Mom.
It feels good to grip the handlebars of my old city bike. I had it refurbished recently, figuring, if the bike is in working condition, I’ll ride it, but never got around to it so it has sat in our garage in fine shape but with no one to ride it. We go way back. In my mid-thirties, I performed death-defying commutes up and down the misty morning streets on this same blue bike. I was agile, strong & flexible. I loved to stand on the peddles and cruise downhill with the wind rippling my hair, fearlessly riding through heavy traffic, confident even the worst road circumstances could not touch me. I was too quick for cars.
Charlene, her pink helmet snugly in place, returns and straddles her bike.
“Ready?” I ask.
“Ready,” says Char.
I push off and no sooner am I upright on the bike, without warning, I list to the right and go down, too fast even to break my fall with my hand, head to the pavement, helpless. I lay there, trying to feel where’s the damage. My right leg hurts. My foot is entangled in the spokes of the wheel. Front wheel or back? I’m not sure. My head feels ok. I don’t think I’ve broken anything.
But fall off a bike?! Impossible. I’ve never fallen. Thank goodness, or thank good preparedness, for the helmet. My sunglasses lay shattered on the sidewalk. What a frightful, awful fall! Charlene rushes to my rescue.
Jump ahead thirty-six hours, late at night, I get out of bed, head for the bathroom across the hall and drop unconscious at the top of the stairs. Only Charlene, the lightest sleeper in the house, hears me. She steps into the hall as I am climbing to my hands and knees. She whispers, “Dad? Are you okay, Dad?”
Who is this man who used to be Charlene’s father? Have I scared the dear girl away? These past few months, I’ve lost grasp of her attention. I fear I may have become slightly strange to her. Why not? She’s seen me fall off a bike. She’s seen me climb off the floor a foot away from tumbling downstairs. She’s seen me one chemically-disfigured night shouting throughout the house, embittered, weeping uncontrollably, my system critically depleted of Dopamine.
There’s this other drug I take, Pramipexole, two pills four times a day, including bedtime. It works well to scat away the crawly feeling typically called restless leg syndrome. I’ve had restless legs all my conscious life. As a boy, I found shaking them violently in bed, slamming each calf on the mattress, bouncing it and slinging it upward, helped me go to sleep.
PD is no childhood discomfort. When I am out of Pramipexole, and it has happened, I feel as though up and down my left leg and arm tiny sacs are bursting beneath the skin, and out of each sac come hundreds of infinitesimal insects scampering in all directions. You cannot reach them with your fingernails. No lotion heals. No diversion diverts you from their intolerable hypoesthesia. Once, I ran out of Pramipexole from Friday afternoon until Monday morning when the pharmacy opened. I did not sleep more than a total of twenty minutes the entire time.
We are in a hotel banquet room, Jen and I, for some event put on by her work. Inside is chaos. People in large gelatinous groups quiver like bee hives, moving in every direction. I lower my head to get close to Jen’s ear and whisper, “There’s too much con-conclusion, confusion, there’s too much confusion. I c-c-can’t get no –”
“Are you having difficulty?” she asks, knowing the answer could be yes, for sometimes PD does make me suffer, or, not suffer, it makes me deal with its symptoms, or, not so much merely deal with PD, I am challenged by the condition. I will not give it the respect of naming it, but call it only by initials, a temporary designation, something that will eventually be gone, someday, passed, forgotten. And more, PD also stands for other things, like Police Department and Public Defender, Program Director and Public Domain, Peritoneal Dialysis and Pupillary Distance, all commonly accepted as PD. I have accepted PD’s challenge. PD could not have picked a worthier challenger, imho. I expect to beat PD, to stop its progression in the coming months and years, arrest it and throw it into the prison I build out of exercise, diet, and all good healthy actions. I expect to kick PD’s butt each day, hour by hour, dose by dose. Twenty minutes ago, on the drive here, I popped the last quarter of a Dobe Cube in my mouth. Already I can feel it join the good fight. Yes, I will beat it, beat it senseless, beat that which has never been beaten, beat it to a filthy death.
I say to Jen, “I can’t git no retire, recoil, no, no, relief. I can’t get no relief.” My attempt to Dylanize the moment collapses beneath the weight of the confounding condition. I was hoping for a laugh.
“Let’s see if we can get you some relief.” Jen stands fetchingly on her tiptoes. Her eyes sweep the banquet hall. “Over there. That looks like there might be something.”
Something turns out to be an open bar. We find two places at a table. Jen has her first glass of wine of the evening; I my sparkling water with lemon slice. While she has networking to do on the banquet room floor, I plan to stay seated. Us PDers often appear to be drunk as we walk, wobbly but upright. One may be fully alert and intellectually engaged in conversation, but the body may not care, refuses to take part in anything so elitist as thinking, and jerks you to the floor. I may be sober as a dentist, but I may topple as a drunk.
Household automotive needs require Tyler and I be dropped off at the ball park an hour prior to the scheduled arrival of Ty’s team. We decide to get Tyler started warming up and toss the ball until the team begins to show.
It’s Dad’s idea, this average father-son baseball toss, out beyond the right field fence, next to the school, where we’ll be able to see when the first orange-black-&-white O’s uniforms begin to appear on the field or in the dugout, and our catch is going well, both ballplayers, one past, one future, throwing accurately, catching most everything.
Tyler has improved with the glove. He’s throwing harder, too. I’m trying not to look through daddy glasses, I do understand what I’m looking at, and I observe right about now after twenty or more tosses, back & forth, there’s no doubt, it shows, Tyler is getting better.
Come to think of it, so am I. I feel none of the usual stiffness in my shoulder as we throw the old brown bumpy baseball, the same ball they use in Little League with raised stitches. I sling it to Tyler with extra zip.
Could it still be possible I might reclaim this small act from my past, this nugget of my divine youth? Throwing and catching a baseball. Tyler throws one beyond my reach, the ball skips past and I turn to go after it and in an instant I am falling forward, jerking and descending without control. It happens so quickly there’s nothing I can do to stop it or shield myself from the blow. It was the same on the bike, except this time there’s no helmet. I land on the bone between my left ear and eye, my high upper cheek. This time, there are no thick sunglasses, I’m wearing wire-rims. It’s a terrible hit. I’m lying on my face. I spit up a tablespoon of pale green fluid onto the asphalt. I feel something bad has happened, but I can’t tell what. Taking a mental inventory, I arrive at the conclusion that I’ve hit my head. Tyler is the first to reach me. “Are you all right, Dad?”
“Yah, Imallright, I allright. Don’t worry, Tyler, don’t worry.” I get my hands under my body. My right hand is painful, but it works fine to lift me up. Skin pain only, apparently, and so it vanishes when I think how bad can a pain in my hand be in the face of what may have happened to my face, or head?
Sure, Dad’s fine. It takes half-a-minute, but I climb to my knees and then to my feet, squeezing out every remaining drop of adrenaline left in me.
Ok, I’m standing. Now what? I look at Tyler, irritated with myself, and softly, as calmly as possible, I ask him, “S’ther any blood?”
“There’s ah, there’s –”
I see my right hand is scraped and smeared red. I feel moisture on the left side of my face.
Now, there’s a woman standing in front of me. She is a short woman. I’m hardly standing upright, but I tower over her. And she is a young woman, I think, or not, I’m not sure. She’s asking a question, she’s asking me, she’s asking if I need help.
I straighten up and say, “Yesssplease,” as if she is the hotel concierge and I have a key crisis. She guides me across a grassy patch. Where’s Tyler? He’s right there beside me, looking like a Baltimore Oriole on game day. We go into a classroom. Once inside, I look at the woman’s eyes and try to gauge the level of her alarm. Alarm enough.
At a glance, I see it’s an elementary classroom. She hands me a handful of packages the size of Checkers squares. She says they are moist towelettes. I have no idea what she’s talking about. She says I can use these to clean off my face. What? She puts her hand on my shoulder and leads me to a coat closet about the width of my waist. A mirror is hung on the inside door.
Now I understand. I try to tear open one of the towelette packages but cannot. My fingers won’t do that kind of fine work. She takes it from me and tears it open. Finally, I look at myself in the mirror. My face looks bloody and scraped. It hurts. My right hand has pits of rock embedded in the skin, bloody and bloody painful. For reasons I can’t explain, I say to her, “I have Parkinson’s. I just fell,” as if this is my excuse. She asks if there is anyone who could come and help me. I tell her my wife will be here any minute. I know it is more like forty-five minutes, game time, but I say it anyway.
The upper left side of my face is a mess! I dab at it with the moist towelette. The teacher has moved over to Tyler and is talking calmly with him about Little League. I hear her say, “You two look exactly alike.” Out of nowhere, pain erupts in my left thigh, as if lanced. “What is *that*?!”
I yell. It feels like my femur has snapped in two, as if I know what that feels like, though I’ve become better lately at imagining such things. I lunge for a table to prop myself up.
“Can I call your wife for you?!”
“Notanks. No. Thanks. She’ll be here a-a-any minute.”
It’s a cramp, I tell myself. That’s all, a cramp. You’ve had cramps.
Remember running wind sprints after baseball practice? I stand up again, before teacher can call 9-11. I limp to the mirror. I sop up what blood I can with the towelette until it is soaked. Now I feel renewing clarity and tear open a band-aid and put it on my face. One band-aid doesn’t cover much.
I shake the teacher’s hand with my left hand and thank her with my most sincere voice, without looking her in the eyes. These days I’ve no idea how sincere my voice sounds. PD slowly erases nuances in the voice. It does the same to facial expressions. Tyler and I step out of the classroom and immediately see a few O’s uniforms in the distance, teammates gathering along the left field line, limbering up.
“Ok, big guy, g’luck.”
“Ok, Dad.” Off he runs toward his baseball game, my son.
DJ Bartel is the author of two books of fiction, the award-winning collection of stories Voyeurs, and the novel High’d Up. DJ’s work has been published by Harper’s, Hustler, Time-Life, Doubleday, Windsor Review, and many publications in NY, L.A., D.C., and abroad in Moscow and Paris. Bartel served as co-commentator for the ABCNews.com coverage of Princess Diana’s royal funeral. DJ taught writing for more than a decade at The Johns Hopkins University and the University of Pittsburgh and was called “a great teacher” in The New York Review of Books.