[This piece was first drafted in 2009.]
Today while the blossoms still cling to the vine,
I'll taste your strawberry, I'll drink your sweet wine,
a million tomorrows shall all pass away
ere I forget the joys that are mine today.
Randy Sparks, 1964
Most days I make a list of some sort or another. Today I left the short one in my head. I'm clear and rested and a quick reference back won't be any challenge. Other days if I don't get it down into a notepad I don't stand a chance of remembering any of it.
There are seven cluttered around me on my desk right now like old friends. Names and numbers, dates, abbreviated chicken scratch in five different styles of caregiver handwriting. They're dead leaves fallen from above, through the ceiling and all around me in varying degrees of lifeless decline, various stages of death throws, a mixture of news and history and some hopes for the future. My lists are documents verifying my existence, living proof that I was here and had some things I tried to do.
I look in front of me and read. Some of them feel like demands, others invitations. I wonder: Have people always made lists? Was there a time at which people only did as many things as they could remember they had to do -- and no more?
So, give me a list, because sometimes it's as though there's been a flood and I'm hurled swiftly down an engorged river, twirled among the whitecaps, scraped on jagged stones beneath the surface. There's a place back there along the shoreline where I' m quite sure I am supposed to be but there's no way back. That is, unless I keep track through gasps and gurglings, eyes strained bloodshot to the corners reaching out for landmarks -- remember that squirrel, I think I saw a white house with blue shutters, there's a hollowed out oak, a boulder like a buffalo hump, keep track, keep track, so we can find our way back.
In quieter times, self-possessed, when I'm feeling free, jotting things down feels more like the finest craftsmanship. Before there is a list there's an open page, a naked canvas. I'm in my blessed workshop with fresh pliable lumber, the latest tools of the trade and countless hours to spare till I sand it smooth and hold it up with pride. Yes, I'm going to make a list and when I'm done I'll do these many things that I've set down and the world will be a much better place because of it.
* * *
Of course, it should matter very much what we take time to list, how we set the course for daily navigation. But what if, instead of pay bills, get groceries -- milk, cheese, bread, lunch meat, birthday card for Grandma, oil change 2 p.m.... our lists read something like:
-- Today your heart will beat 100, 800 times... so be grateful, take it easy
-- Before you go to bed tonight your dog will have lived a week...the government will have spent $60 million on "defense"...
You know, stuff like that...
In fact, one year I got excited around New Year's and I decided to commit myself to making a list of things I was absolutely sure were worth memorizing. I encouraged parishioners to create a "Let There Be" list, empowering them to activate their cocreative potential, to unwrap the gift of Christmas. They came, after all, each Sunday to start over and I wanted to hand them an open canvas with brushes and limitless colors. I wanted them to leave splattered with life or covered by sticky notes about how to give themselves back to the Craftsman, the hungry world.
I just came across an old note from that season...
-- Remember... how many children die each day from hunger related disease? How much of the world's wealth is owned and controlled by the US? How many tons of food are wasted each day in our country?
You know, stuff like that...
* * *
Sometime close to the end of the school year my mother would register me and remind me that it was time for camp in just a few weeks. I'd wait for the mail to come. They'd send me my list: sleeping bag, flashlight, sunscreen, bug spray, towels and wash cloths, battery charger, urinal, emergency phone numbers and so on... I'd read it carefully at the kitchen table. I'd jot notes of extra things I wanted to bring for sure: silly string, comic books, bubble gum cigarettes and the fake barf I bought at the novelty store -- it looked just like real. I'd also make a mental note to call big Mike and see if he could get his brother to hide a Playboy in his suitcase for us.
I'd sit at the table and stare at the words and I'd smell the horses in the barn, hear the voice of my first attendant Karen from years before. She held me safe in the saddle, I held on to the coarse black hairs of the Buckskins main and was a cowboy.
Soon the boys and I would be waiting up all night for kissing raids, we'd fly over the blacktop chasing whiffle balls into floor hockey nets, tell our young-Buck attendants "Go man, go... "... crashing into other wheelchairs if we were lucky. We'd swap dirty jokes, smoke cigarettes and launch macaroni across the mess hall.
The list was a letter from heaven in my hands and I was being invited back.
From there I'd float over to the top drawer of the desk in our front room, take out the phone directory they printed each year with all my friends circled on it: big Mike, Danny and Steve and Perkins, my favorite caregivers, the ones who could drive us around to concerts and take us overnight between camp experiences. That list of names and numbers was a link to a life I got to live for seven days once a year... with just a few glimmerings throughout the year to keep us hungry. It was dog-eared with bold black and red ink underlining, like a preacher's private Bible with accumulated holiness from use.
At school Perkins asked me if I got my camp stuff yet. We were talking in resource room before going off to class still curious about why they called him Jim at camp and not Jamie like the rest of us did every day at Edison elementary. He seemed to enjoy having a different name in a different place. I went by Smit, rarely Randy, never Randall.
Jamie Perkins was a dark-haired round faced friend and fixture of my life from the third grade to senior year of high school. Consummate Chicago sports specialist, Sox fan (rough enough against me to refine my Cubs commitment), classic rocker and radio junkie. Jamie and I were inseparable. We picked each other for teams all the time in gym class, our teacher would split us up as team captain's just to piss us off. For about two years Jamie had a faster wheelchair but we survived the strain it put on our friendship. He would always wait up for me.
He wore leg braces that stayed on all day despite using his chair for most of it. His mother put them on him each day so that he could be stood up like a statue, it helped folks transfer him from place to place. In the therapy room or in study hall they would walk him around carefully like Frankenstein and let him stand in place. God forbid a gust of wind! I thought to myself nearly every time I saw him stand. The braces locked at each knee with a latch that stuck out and wore holes into his jeans around the knees. I'm pretty sure Jamie started that whole ripped jeans trend. If he ever nailed you with a knee during hockey it hurt like a son of a bitch.
I was growing up in a Christian home with church routines and no thought of a world without God, sin, Jesus, hymns, grace, heaven or any of the rest. In contrast, Jamie seemed never to have bothered with any of that. His take on life was refreshingly straightforward and honest. There was no strange mystery behind what it was we experienced. He repeated aloud a lot of what he heard from his father as he worked in the garage on Saturday afternoons. I tended to quote my mother's wisdom or at least that much which I could glean from overhearing her conversations on the phone with my grandmother, but that's another story.
To me, Jamie's observations, though often glum, seemed sharp and truthful. We'd be talking on the bus about the bad news our driver insisted on listening to each day. Chicago area bad news never seemed to disappoint. Radio news raised listing to an art form, painting a world down to the darkest detail with incredible precision and conciseness. Today: a gang shooting, a rape and some aldermen taking bribes. That kind of stuff.
Nearly every time we heard a report together on the bus Jamie would offer a few minutes of commentary afterward. There was then usually some back-and-forth and then he'd offer an edict as though self-consciously aware that he was closing the topic with a few words of uncommon insight. I can still remember his face. Empathically, definitively, authoritatively, he'd shake his head and speak the words and I couldn't help but nod in agreement: "People are Assholes."
* * *
I'm at the table feeling fresh having slept in and Sophie's feeding me. Each bite is a gift, I'm full of gratitude and savoring. We've been talking about the sacramental significance of food... remembering, breath by breath and drink by drink and meal by meal... God gives, and so we live.
We go with no television or radio as usual. Just the quiet of the sun-filled backroom. I eat and I wonder "What is it about her that makes her such an incredibly consistent cook? I could eat this breakfast every day." We speak and don't speak in perfect rhythm, I enjoy the dance of another morning together and I'm also sniffling along the way.
The Dimetapp is gone and I'm feeling freshly resurrected from my recent illness. And so I look to her eyes and then to the yard and I chew and I swallow. I'm halfway through a sentence about a squirrel on a limb who's watching me when I stop and I sputter and cough in mid-sniff. Cough, cough, no food in the lungs please. I draw one deep breath and blast an explosive NO to the small potato chunk tiptoeing ever so slightly near the boundary of my trachea. I cough and clear my throat and I stare at the surface of the dining room table.
It's awkward, scary. I seize up, I am thrown.
Suddenly the surface of the table has become the gym floor at Lakeview Junior High School in Darien Illinois where Jamie and I shared 3-8 grade. We're much older now and it's a Thursday evening and we are sitting together just outside the crease in front of the goal reconnecting after not having seen each other for several years.
The short talk is a tragic gasp. We're insistent on our sports, we're together to play and so when I ask "Hey, how are things going?" I'm ready for something short and manageable. Jamie's voice is glum, he's in his old dour tone resigning himself to the truth and I can feel him reaching. As he speaks the tension is palpable. He wants to play and keep things light and just talk. Our summer camp years are far behind us now and he seems aware of every layer that time and distance have placed between us and he doesn't just want to list what's not right with his life. Still as he talks I'm aware that he's desperate for me to be with him where he's at.
"Yeah so... my doctor wants me to get a feeding tube" he says. "Cause when I'm eating I'm coughing on my food. I'm not really choking but stuffs going into my lungs. So I don't know what the hell to do. It sucks!"
"It's bull shit!" I say. Fucking bull, man.
"I can't eat without coughing... but you know me. I mean, Jesus, I love to eat..."
Shortly after camp one year Jamie and I went to see STYX. Our friend Ken Brown picked us up and took us downtown and for those few hours in the smoky darkness of the concert hall we were serious rockers. I spent my whole allowance on the black T-shirt I bought. I wore it to school the next day like Jamie and all of our friends were sick with jealousy. That night after the concert we went back to Jamie's house and listened to REO Speedwagon and had pizza and Pepsi, almost so much that I was sick.
Jesus was there saying "Take and eat."
I remember us chowing together and watching how easily Jamie chewed. For every one piece I ate he seemed to have three or four.
Now we were in our late 20s. We'd already graduated high school some time ago. Life had moved us on to very different places. There had been college for me and girlfriends and falling in love with Jill and my marriage. There had been that one awkward bumping into Jamie while Jill and I were shopping at the mall. All of a sudden there he was, and so I introduced Jill.
As we talked about the wedding Jamie's face lit up and fell all at once. There in the middle of the shopping mall he wore a smile I was longing to trust. He told me how this was a sign that there was hope for all of "us" to find someone. I agreed and then we spent a few more minutes together promising to call and stay in touch and returned to our shopping. For the rest of the day I was nauseous and quiet telling Jill I was fine. I'd shared joyful news only to watch Jamie dissipate into the distance while I looked for a place to cry.
But at Lakeview again, before the game there was another chance. We were living close enough to remain connected to some floor hockey nights being put together by a local recreation center in town. Playing together with some of our old teammates brought back all of that life and vitality that we enjoyed through high school. Three years in a row we won the tournament feeling like we were gods among men. Now Jamie was on my team again. I was in the net and he was on defense like it always used to be and in about 60 seconds somebody was going to play the anthem on a boombox and we were going to get underway.
Never mind sissy time. Let's play the game assholes.
After Jamie spoke to me, there on the gym floor just outside the crease in front of the goal there was no time to unravel. At that age and in that place I was not available to myself or to Jamie. I was getting quiet and nauseous.
Feeding tubes are beautiful things in the eyes of some. I can imagine doctors with compassionate intentions and clean categories, cutting small hole after small hole into the abdomen's of precious persons. I can see them placing the tubes gently into stomach after stomach, making a way for life to flow on, providing for nourishment and sustenance.
A feeding tube taped in place with adhesive to the skin is ugly in the eyes of some. A death-patch, a sign to all and to the one who wears it on their soft cream stomach that something sweet and elemental to there being has disappeared. The plastic tube they tuck beneath their shirt is a reminder that they have eaten there last meal. Taste and see this, God damnit.
It is a reason for some to celebrate that such a basic need can still be met and that life can continue, to others it is a jolting stab into what is otherwise whole and tender, an open wound, a tragic choice to be alone in one's peculiar hunger with nothing ever to savor or swallow again.
I love to eat -- he said. And John Merrick said "I am not an animal." And how many others have had to name, have had to declare their most basic dignity? How many have coughed and cried out NO! into the face of distasteful circumstances -- "I want to taste the life so many live without thinking. I am human, Jesus let me be human!"
I want to make a list of these absurd declarations that nobody should ever have to make. I want back in my workshop until it is perfected. Let me live to write it down dark and bold and hold it high for Jamie, this list that every asshole everywhere in heaven and on earth should already know by heart.
* * *
The bonfire rages, warming us in the round at closing ceremonies. I see flames reflected back from chrome framed wheelchairs all around the circle. Campers in sweatshirts, attendant caregiver-volunteers, arms around shoulders, woodsmoke and bug spray, hugs alongside... we sway back and forth. Despite digging my heels deep into the sacred ground of Camp Ravenswood as early as Tuesday, Friday night, the saddest night of the holiest week in summer, is upon us again and we know the words by heart.
There is a communion of saints; camp director with her clipboard and whistle, the older arts and crafts girls I'd had crushes on all week, Jamie on my left, Steve on my right, and big Mike and Danny and the rest of the guys from our cabin. Moose, the activities director-muse, able to play any song you can name, closes his eyes and cradles the guitar as we all sing the words...
I can't be contented with yesterday's glories,
I can't live on promises winter to spring,
today is my moment and now is my story
I'll laugh and I'll cry and I'll sing.
Today while the blossoms still cling to the vine,
I'll taste your strawberry, I'll drink your sweet wine,
a million tomorrow's shall all pass away
ere I forget the joy that is mine today.
Today, I'm much too old for camp. Jamie and Steve are out of reach, I'm not certain about big Mike or Danny or the rest of the guys in the cabin. There's a prayer inside that wonders whether they received another letter from heaven. Whether they've been invited back for good. Could Camp be heaven without them? I've got questions like these and so many others. I wait for my letter, I'm making my list.
Powerful. Thanks Randy.
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