by David Rakoff
A friend asks if I’ve “picked out” my prosthetic yet, as though I’d have my choice of titanium-plated cyborgiana at my disposal, like some amputee Second Life World of Warcraft character. Another friend, upon hearing my news, utters an unedited, “Oh my God, that’s so depressing!” Over supper, I am asked by another, “So if it goes to the lungs, is it all over?” Regrettably very possibly, I reply, and when I go on to mention as how they no longer give much radiation for Hodgkin’s, he says, “Well, you got twenty-five years out of it,” as if the radiation was a defenseless washing machine I was maligning, and what did I expect, really?
But here’s the point I want to make about the stuff people say. Unless someone looks you in the eye and hisses, “You fucking asshole, I can’t wait until you die of this,” people are really trying their best. Just like being happy and sad, you will find yourself on both sides of the equation many times over your lifetime, either saying or hearing the wrong thing. Let’s all give each other a pass, shall we?
I go to a production of Our Town. The play about the inhabitants of Grover’s Corners at the turn of the century is moving in its simplicity. With the exception of maybe a bowl of string beans, all the props are mimed. The costumes are minimal and not period in any way. In the last act, Emily, now dead, begs to return for just one more day among the living. Her wish granted, she leaves her grave—a folding chair—and pulls aside a curtain, and behind it, there is Life! A fully decorated set of her childhood home’s kitchen, with frost on the windows and a sink with a pump that works and her mother, young again and now in 1900s dress making breakfast on an actual stove. Such sound and activity, it is almost too much joy, too much physical presence for both Emily and us. And then, the director David Cromer’s brilliant coup: the smell of the bacon that is really cooking slowly reaches us all in the audience. That great, domestic olfactory “Yes!” (except for the pigs, for whom it’s a “no” about as definitive as they come), and I want it all: I want the bacon and all it entails, I want my arm, but even more than that, I want the years. I cry. It is my Susan Hayward moment.
My mother calls with potentially good news. The most recent MRI might have shown that the arm doesn’t need to be taken. Keep your powder dry, I think. I continue to do most things one-handed. Returning too soon to the world of ambidexterity would show ingratitude for my gifts. It would be tantamount to stepping on the loaf of bread to protect my pretty shoes.
I meet the surgeon, Carol Morris. An elegant and calming presence, she’s like a cross between Sigourney Weaver and Michelle Obama. When she finally says, “I don’t see a need for amputation,” I burst into tears. It seems I’m racking up the Susan Hayward moments.
And so: five weeks of radiation to sterilize and cauterize the remaining tumor, and then surgery, the hope being that they can get it all this time. They will, however, have to sever some nerves to get it out. I won’t be able to use my triceps. If I lift my arm over my shoulder, it will flop back down onto my head. Again, I welcome the thought of years of being smacked in the face by my own left hand.
The first week of radiation is almost euphoric. Such an exciting task ahead of me. It’s the scene where the teacher comes to the small village. The children, sleek-limbed and beautiful, in pressed white shirts, stand in formation in front of the one-room school that will also serve as the teacher’s new home. They sing a song of welcome and all seems absolutely right and bursting with promise.
To wit: the rosy sunrises that greet me each morning as I walk out at 6:45 to get the bus on First Avenue. And then, as we reach Thirty-seventh Street, to our right the East River and the big sky above it opens up in an expanse of newest day. And how lucky that, here it is, February, and not really so cold as all that, and the handy Purell dispensers everywhere in the hospital that dribble out palmfuls of the disinfectant with an automatic salivary whir, just by putting your hand under them, will keep me healthy and antiseptic. Plus, free graham crackers on every floor. Everyone in the hospital is so unbelievably kind that just going is therapeutic in and of itself. I start to regret what I’ve done with my life, seriously calculating whether, if I manage to beat this, I could make a change and enter one of the helping professions. I sound like the narrator of Bleak House, a female of such treacly aspect that, as I vaguely remember, she almost cries out with delight when she contracts smallpox. Oh, what marvelous life lessons she’ll learn, what a curative to the venality and sin that were surely festering just behind her unmarred visage. So what if there is an interval most every morning when the wide plate of the radiation machine positions itself directly in front of my face—like some curious and possibly hungry predator, studying me dispassionately as its scrim of lead rods reassemble themselves, leaving a gap that resembles California through which the radiation will pass and penetrate my neck—and my heart starts to beat like a panicked bird in a rapidly heating cage. And who cares if that leads my thoughts to turn yet again to my lungs, invaded, Jackson Pollocked with cancer like a spatter pattern in a crime scene. Just listen to the Billie Holiday CD I brought in, recite the Elizabeth Bishop: In your next letter I wish you’d say / where you are going and what you are doing … Get through it.
And it remains eminently manageable, even as it gets harder to run to the bus stop in the morning. That scene of school-in-the-village perfection is starting to show some cracks as the weeks go on. A perplexing rustling in the thatch of my roof. When I ask one of my students about it, he says the local word for cockroach, and then places his thumb and forefinger an uncomfortably long distance apart to indicate the size of the critters. Oh well, no bother yet. Ever gaily forward, slather on the greasy moisturizer to protect your radiated skin, realize that no one can really give you the assurance that you will beat this thing, no matter how many times you ask them. Pay no mind to the older brother of one of your students who starts to show up every day and stands at the back of the classroom wearing army fatigues and holding a machine gun.
It is something of a comfort not to feel like one is twisting in the wind alone. Julie Norem’s age of discontent seems to have dawned. Most everyone I know is having trouble, some fuzziness that blurs the borders between the micro and the macro, momentarily conflating their own personal problems and the global economic meltdown. It seems to all of us that the center is not holding anywhere, everything is prone to breakdown, entropy, the world feels lethally friable. The best-laid plans, one’s most fastidious contingency strategies have revealed themselves in the cold light of day to be laughably inadequate, no match for the happenstance that seems of late only to promise death, mayhem, poverty, flood. And here you are, having spent all that time protecting your home from the oncoming elements only to find that it has been shored up with crackers.
I might be the cutest patient on the floor, a dubious honor on a cancer ward. Not so the results of my surgery, which are an unambiguous gold medal. Dr. Morris was able to peel the entire tumor away. It went better than even she had hoped. I will have use of my triceps, and as for the margins, “They’re clean but close,” she says. Cancer is pass-fail. I’ll take it.
I stay four days in the hospital, two of which are challenged by my (generally very good, paid for out of pocket) insurance company, their official reasoning being that I could hobble to the toilet and take my pain meds by mouth, as if I was some robust malingerer or had checked myself in for a boob job. We appeal. We win. But may I briefly say … what the fuck? I paid my hefty premiums, even as I ran out of money due to my unproductive year-plus of pain, plus hospital bills. But I am lucky in my background and prospects, my connections that allow me to marshal, at a moment’s notice, three oncologists to save my arm, or another dear friend who is an attorney to challenge the insurance company. All of it means that I remained essentially affluent despite a near-zero bank balance. How are people supposed to manage? How did elected officials have the balls to even try to spin their wrong-side-of-history bullshit as being in our interests? Or moral? It is the duty of society to take care of its ind
ividuals, plain and simple. We will never be healthier than our sickest member.
In Trader Joe’s, not two hours post-discharge from the hospital, in a coincidence to make even the most melodramatic fiction-workshop hack throw up his hands and say “Oh, come on!,” I walk by a guy with no left arm or shoulder. I swear it. Everything but a sandwich board saying “There but for the grace of God …” From my safe vantage, I can say, he doesn’t look half bad.
I am still in pain, two months later. A chatty e-mail takes it out of my arm and exhausts me. I am unproductive, which embarrasses me. At a birthday party, a nice young woman in a Marimekko-ish dress tells me about her book proposal and her project sounds so smart and erudite that I can only hear it as an indictment of myself and my sloth. Only the next morning do I remember that this is what I felt two decades prior when I moved back to New York post-treatment, having been out of the slipstream for eighteen months and feeling hopelessly behind the curve. I would be out delivering a package—one of the necessary humiliations of assistant-hood in the book trade—and would see acquaintances from college up ahead and start announcing from a distance of twenty feet away to people I barely knew and shouldn’t have cared about, “I’m not a messenger!”
After a year and a half, I am a connoisseur of unpleasant physical sensation. All the subtleties of my pain and its gradations become quite clear. Sometimes its onset is stealthy but definitive, like having one’s boat gently ease up onto a sandbar with a gentle, granular squeak and there you are, stuck. I take something, and after a while, close to an hour as I sit there in my run-aground vessel, the water level gradually rises until my skiff is lifted and I am afloat once more.
At other times, the pain comes on like the various instruments of a jazz combo in the wee small hours. The surgical site starts the riff with a slow but steady rhythm—cymbals caressed with brushes—joined shortly thereafter by the piano pulsations of my thumb and forefinger, the old standbys who began it all. Finally things get into full swing with the lead melody of the triceps, a forceful trumpet. Once the song has begun in earnest and I’ve sat through a few choruses, I head to the pill bottle to take one (vainly wishing I could follow the implicit advice of Dave Brubeck and actually take five). My analgesics of choice are Percocet and OxyContin, the latter apparently the stuff the kids in middle America are ruining their lives over, albeit by crushing it up and snorting it. In the absence of discomfort, and taken so heedlessly, it must be wonderful, but all it really does is take me from negative five to zero, and that’s enough. Perhaps these OxyContin kids are young positive psychologists in the making, staking out their right to go from zero to positive five.
Despite this Inuit-fifty-words-for-snow taxonomy of pain’s manifold forms, I cannot fashion a dwelling from frozen blocks of it, or cunningly use a thinly falling curtain of it to conceal my form while hunting seal. The most I can glean from it is a siren call to seek pharmaceutical attention, and I got that message a while back.
I have been asked a few times if I’ve learned anything. It’s not a chastising question, the way one might interrogate a tearful four-year-old after releasing him from his time-out in the corner, and I don’t know that I have the answer. This isn’t my first time at the rodeo. I’ve already faced mortality and my body’s rather startling lack of allegiance once before, but was I perhaps in need of some cosmic corrective of my venal ways? Did I need to be rendered more thankful, less cavalier, less glib, maybe? Again, I’ve tried to be all of those things, although whether I’ve been successful is not for me to say.
After a lot of urging myself and others to regard terrible outcomes unflinchingly, to really think on such matters and championing those among us who cannot help but do so, it turns out that, with the wolf just outside my open windows—closer at hand than I really feared he would ever get to me at this age, with his hot breath bothering the curtains—I’d rather not dwell on it, which is kind of funny, if you think about it.
As for the fear that has marked a lot of this, it is bereft of larger lessons. Other than the reflexive survival instincts it triggers, avoiding being something else’s dinner, it seems completely useless. I don’t mean that as a macho preamble to the phrase “so I choose not to feel it and just go on as if I didn’t.” I mean that fear lays waste to one’s best reserves. It foments rot in my stores of grain, eats away at my timbers. If I dwell on the possibility that I might be dead by forty-seven, I can’t really find a useful therefore in that. Therefore I will train for the marathon, confess the long-unspoken torch carried for X, etc. I once joked that if I knew the world would end in one day, I’d probably just break into a bakery and eat all the éclairs I wanted. But true fear—which, luck of the draw, doesn’t ambush me as much as it might or as much as I’d thought it would—just leaves me frozen; amotivated and stunned. Dinner, in an evolutionary word.
I have scans at the three-month mark. My lungs remain unchanged, thank goodness. As for the surgical site, they see a lot of changes, but are fairly comfortable in deeming it postoperative inflammation. Fairly comfortable. They will watch it closely and send me for an MRI in another three months, and another scan three months thereafter. And so begins my life for the next five to ten years, if I’m lucky. There is just a baseline uncertainty that will need to be lived with. I finally understand what Julie Norem meant when she told me that one could be simultaneously anxious and happy. The assurances are momentary, at best half comforting, like being told “That’s not a man in your room. It’s just your clothes draped over the back of a chair casting a shadow, see? However, there is actually an insane, knife-wielding murderer loose in the neighborhood. G’night.”
Everybody’s got something. In the end, what choice does one really have but to understand that truth, to really take it in, and then shop for groceries, get a haircut, do one’s work; get on with the business of one’s life.
That’s the hope, anyway.