FAP Syndrome Is Devouring My Friend Alive
Patrick Martel
I am choosing too liberal, or maybe too literal, an interpretation of my writing assignment, which was to write a “witness piece about where I see the Church alive.” I take the word ‘witness’ to mean, “write about what you have witnessed, something you’ve seen.” “The Church” is harder for me to define. It is something more than big, old, beautiful buildings—but it is certainly what we go to those buildings every week in desperate search of, carrying with us a hefty weight large as a church’s cornerstone, the crushing responsibility that I, and you, almost certainly have to be, to become, part of the object of that search for others. The short answer is, I feel the weight of the church-stone most acutely when I see people dying.
Let me disclaim my un-cheerful opening: Apart from the Church, the human story begins in happy and blissful ignorance, becomes complicated with an ostensible enlightenment and ultimately, ends in despair, death, and decomposition. The Church flips that narrative on its head, beginning in tragedy with the fall, beginning with death, but ending with a joyful victory, a narrow escape. So hang with me through a brief stint of some things that are unpleasant, even gruesome, and I think that together, we can find our way to somewhere really worth being.
I was in Philly a few years ago visiting some friends, when I read on a prayer-chain email that Joe was in the hospital, dealing with some complicated medical issues that doctors were having trouble identifying and treating, and he needed our prayers. These kinds of chain emails in my community have roughly the same effect as when someone in a movie coughs; it means they will likely be dead within two scenes. I texted Joe, and I’m not sure exactly what I said—I guess it doesn’t matter much. I probably asked what was going on, and how he was doing.
Joe is the kid that grew up a block and a half from me, right up around the corner, in a white house with a long, sloped driveway up the side that we could sled down when it snowed. He was kind of a unique guy—had a penchant for the violent kinds of games, with plastic guns, cowboy-style revolvers, bows and arrows, superheroes, knights, army guys, cops and robbers. He had a strong sense of justice, though he seemed to always share a sympathetic connection with the “bad guys”—the robbers, the fugitives of the law. He got into trouble a lot, challenged authority, argued back at his parents in a way that always left me in scandalized silence, inching backwards, wanting to disappear into the woodwork. His justice was a matter of perspective; if you knew the villain well enough, you might even be tempted to join his cause. I loved Joe. We were brothers in arms, when our arms were small.
His left arm was smaller than the other, his ulna bowed, and he had to have surgery to put a metal rod in it—I think to hold it straight while it grew, and another surgery to remove the rod. I asked questions, intrepidly, about his malfunctioning anatomy, with the shamelessness you’d expect of a child. He was double jointed, and I always enjoined him to show other kids how he could bend his thumb back almost to his protuberant elbow, like he was my own little private freak show. And he was glad to do it—it was like a superpower, more than a defect. When he had a cast on, he could only hold a hockey stick in one hand, but he was a year older than most of us, and taller, and was still hard to cover. He was in my grade for a few years because he was held back. He had a speech impediment that made it hard for my sisters to understand him over the phone, so they would hand me the phone and just say, “It’s Joey.”
I was surprised and relieved when he texted me back, for several reasons. We had kept in touch irregularly over the past 20 or so years. I had visited him a handful of times—once while he was in the service, stationed in Oahu, right before he was sent to Iraq. Most recently, I’d seen him after he returned back home to PA. We picked up his three kids from their mother’s house and took them to McDonald’s. But I hadn’t seen him and maybe hadn’t even messaged him since then. And when you fall out of touch with an old friend, you never know which ones will develop that kind of grudge that says things like, “you don’t text me for eight years, and now you want to act like we’re BFFs?” “I never knew you. Depart from me.”
He texted me back, and seemed weirdly coolheaded considering the medical-grade chaos that was enveloping him. We went back and forth a bit, and then I told him I was driving back to Maryland tomorrow, and could stop in York on the way and bring some lunch, if he wanted a visitor. He said sure.
Next day I recited his order off my phone to the server at Subway, “footlong tuna melt, provolone, onions…” when a text from him popped up. “Excuse the greys,” he said. “It’s the chemo.” A second later, another text: “Also some of my teeth dissolved.” I told him not to worry about it, probably in some clumsily dismissive language, trying to play it off, act casual, like I see people with dissolving teeth every day. I realized he was warning me about his current appearance, and apologizing for it in advance.
When I finally found him, in his hospital room, I almost didn’t recognize him. He’d lost seventy pounds, and looked up at me through sunken eyes, gaunt, pale; he was glad to see me, but ashamed—and so was I. “Dude, what’s up,” he greeted me, holding out the bones of his right hand, “you see what I mean? The FAPS eats calcium right off your teeth. They tried some chemo, but it just turned my beard grey.” It wasn’t much of a beard, patchy scutch of tow. I could still hear his old lisp, masked by a new lisp his chiseled down teeth were causing. And beneath that, I could still hear him; my old friend Joe, smug and crass, the same as he’d always been. We caught up on the last few years while we ate sandwiches that I don’t recall having any taste or flavor. There wasn’t room for much small talk, but we tried our best—he matter-of-factly described the ways he’d been either let down or betrayed by the VA, his doctors, his ex-wife, his parents, his own body. What I found remarkable was that even in his descriptions of what, in some cases, sounded to be legitimately harrowing betrayals, that he didn’t seem to hold any semblance of a serious grudge against anyone; that any of them—his ex, his mom or dad—could walk into that hospital room right then, and after maybe a single snide remark, he’d welcome them gladly into the room, thank them for visiting, and share Subway with them just the same as me. I felt that he had such a loose hold on his grudges because of a deep self-awareness of the various ways in which he had cause to share in the blame, had participated in, and maybe even actively brought about some measure of the “unfairness” that had befallen him. All his cynical remarks had an asterisk of partial personal guilt along with them.
He told me what the doctors had been able to gather, that his diagnosis wasn’t actually the mystery, but the treatment that had been the confounding factor. They discovered a few months ago that he had FAP syndrome,1 a genetic problem and prodromal cause of many of the medical woes of his youth. His body had the unfortunate proclivity to develop desmoid tumors, especially ones that attack the digestive organs, and it’s appetite for calcium can cause bony growths and dental abnormalities. This had led to a surgery he’d had months before, to open a hole in his side from which some inchoate form of fecal matter could be drained manually—a hole he pulled aside his flimsy hospital gown to show me, with a drainage tube taped over his loose skin, which clung miserably to his nearly visible femur. I could have counted his bones. He told me a tumor had eaten a hole in his small intestine, and another had a chokehold on his kidneys—hence the installation of this manual drain.
It was the surgery that had put him in the hospital. One of the features of FAP is its hydralike bent towards metastasis; to operate on one tumor is to cause three more to grow. Those months ago, they had solved one problem, but had woken a sleeping split-tongued devil inside him. And now, this kid I used to chase around the neighborhood, jumping fences, climbing onto the tops of the garages, was bed-ridden, sitting up under the assistive power of Dilaudid, taking the last few bites of a tuna melt, while the first few had already begun to dribble out a wound in his side.
We had a nice visit, I thought, under the circumstances, and I drove the hour and fifteen or so home in silence, as the unanswered questions multiplied in me. I wondered if he was dying, but I hadn’t exactly asked him—why hadn’t I? He said the doctors had refused to operate on him, because they would be more likely to multiply the problem. But this wasn’t sustainable—and clearly his body was falling apart. If he isn’t healing, isn’t there only one other direction? Would I have scared him by asking? Would it seem to suggest to him that I thought he looked like hell? Would I have affirmed his fear, his self-consciousness, his insecurity, which he had confessed to me before the visit? Would it have counted me in with the betrayers? Or would it have been a comfort to him, if I had had the strength to mirror his matter-of-factness about all this, to acknowledge the reality, and thereby maybe even allow me to help him through it, help him get his affairs together and plan for that set of potentialities that may exist now just a few streets over from him?
Something dark and heavy began metastasizing within me, an encounter with the thing that rattles always just beneath the floorboards; I was ashamed. It was my shame, not his, that had preempted that conversation, my body that was weak, my constitution compromised. I have hidden myself so effectively, for so long, behind brown, gelled hair, carefully selected J. Crew-and-Vans attire, my things, my car, all my aesthetic frippery. I even kept my conversations similarly gated, kept the same tropes cycling through, and only preapproved topics adorning my daily interactions and buttressing my day with comfort and predictability. I had my shame so expertly buried and disguised that I had forgotten it was there at all—until I realized how disabled I had become even by a conversation about the most obvious human facts. What the Lord had prescribed to Moses regarding the Passover meal had become prophetically manifest in me, ringing out like a verdict on my pathetic offering; I had my loins thoroughly girded, and shoes on my feet: I had eaten in haste.
I was overwhelmed by the time I returned to my townhouse in Baltimore and scrawled out a poem. I remember putting down the first line, the title, like it was some horrid thing that I had been holding in my hands on that trip home, from which I needed to disencumber myself. I had the same fluids, was made of the same mixture of blood and chyme roiling together just under a thin layer of sinew and skin, and it would pour itself out the second it discovered any orifice of escape. I took a notepad and penned:
“FAP Syndrome is devouring my friend alive”
Joe somehow evaded death then, escaped the hospital, and returned to his kids. When I found out he was back in the hospital again just recently, the hydra having struck again, I dug out the poem, and now I hold it out to share it with you, like a bitter drink. I don’t know that there is a punchline here, or a neat moral to be extracted from this anecdote, an exposition and an exploration of some of the grotesque vulnerabilities we all have, the public and the private, the physical and the spiritual, juxtaposed in plain view. The life of the Church is one that is lived in constant meditation on the Cross, that is, on the nakedness of the “Son of Man,” on the wounds of his hands and feet. The Church lives so long as it can keep one hand, like Thomas, in the gruesome, gaping wound in his side.
What does it mean to “believe in Jesus”? What does it mean to “accept Christ as your Lord and Savior”? What is in that assent that is asked of us, that Christ is the truth, the way, the life? My grim insight began with a realization of how uncomfortable the truth actually made me. Makes me. Even to the level of universal bodily function, and certainly bodily dysfunction. Alas, I am perhaps even more ashamed of my shame itself. As I write these final sentences, I am ashamed that they are about myself, and not Joe. It is our condition and our lot to bear this metastasizing shame, and our attempts to unshoulder ourselves from it—to act cool, to deny it, to replace it with a pretend pride—makes us only the more grotesque. But to hold one hand out to the wounds of another, even if that means exposing a worse wound in oneself—this is simply to acknowledge what is most fundamentally true of each of us; to not let revulsion, of the other or of yourself, keep you back; to “approach, as a child”—even a wounded, brutalized, dying, covered-in-sin, hard-to-look-at, Christ.
If we could approach Him, then there would be no one that we could not approach, with delight even, like children in the yard, saying candidly, “Are you dying? Me too…” and then go, as brothers-in-arms, out into the neighborhood together, jump fences, climb on top of garages, and play superheroes together, for as long as we are allowed.
FAP Syndrome is devouring my friend alive
He drips out of drainage tubes
And his chin excretes chemo-greyed wisp, he said.
He lisped before his teeth dissolved.
But I heard in his lisp a want to see me
Without being seen.
Not even my hand can keep from this childish prodding.
I have been told this compulsion is from my own death-shame, intimated in plucked whites, and in my every private urination.
I search for the words that hang on the swinging bridge
between countries of excitable and cynic,
To bring with these sandwiches
To my dying friend;
I want a faith that’s a shelf from which I would neither throw myself expecting flight,
Nor lie in despair, thinking it the floor;
Here I will be naked and wonder-filled.
Here is where my ashes can take wind.
Patrick Martel is a Catholic educator and musician working in the Baltimore area.
Familial adenomatous polyposis syndrome