(Dominik, at prom)
On May 14, 2013 at 3:46 P.M, my 22-year old brother was diagnosed with terminal cancer. The single cataclysmic moment that makes all time before it irrelevant. The kind of shit that almost makes you wish God was real.
It was something called Renal Medullary Carcinoma, (RMC) an extremely rare mastectic cancer found in young black males with the sickle cell trait.
He’d inherented a genetic mutation for the disease, most likely from someone on my grandmother’s side. The only symptom he’d complained about–back pain–turned out to be a massive tumor in his kidney that had already metastasized. The doctor gave him a prognosis: four months to live, maybe five.
Cancer would fling us into an interminable rabbit hole for the next six months. A surreal haze of highways on which we’d travel, two hours every week, to Ann Arbor and back just for treatment. A maze of hospitals with endless white corridors and sickly fluorescent light; of sleeping in waiting rooms and living out of vending machines.
We would know the nurses by name; become familiar with the sound of their shoes on linoleum floors and the perpetual smell of antiseptic and rubber gloves. We would sit in the offices of stern-faced doctors who constantly reminded us that it was “aggressive” and “incurable”, that–no, the tumors have not responded to treatment, but can I prescribe something for the symptoms? My brother was essentially a chart of diagnostic mysteries. A guinea pig in paper gowns. A host of procedures , a series of laboratory tests and vital signs and MRIs and CT scans and EKGs, and X-rays and always, always bad news.
Chemos were long. He was tired all of the time and if he wasn’t tired, he was depressed so it didn’t matter. He spent his days tethered to the living room sofa, sleeping through sadness and watching made-for-TV movies in the dark. Sometimes he’d read the bible, and other times he’d just lie there, writhing with agony, muttering “shits” and “fucks” under his breath. He always wanted to be alone.
He developed a peculiar walk; his arms would lock at the elbows, sticking out behind him and his back would hunch over like he was afraid that if he stood up straight he’d break. Like the cancer had contorted his body, twisting his limbs in ways too exhausting to unravel.
His life revolved around the medication. Pills were to be taken religiously–almost ritualistically–like clockwork in proper doses with proper specifications. Orange bottles invaded our coffee table, all lined up in neat little rows with labels we’d memorized and tablets we discerned without looking. Every pill had a side effect and every side effect had a cure for that side effect.
He got skinny. Very skinny. At about 6’0″ tall he’d whittled down to somewhere around 108 lbs, which meant that you could see the vertebraes in his back almost well enough to count them. His shorts hung around his pelvic bones where his hips used to be and his biceps were small enough to fit a hand around. Sometimes he’d stand up and my breath would catch in my throat and I’d have to advert my eyes. Sometimes his head looked too big for his body.
Even his voice changed. Something monotone and alien. I tried to talk only when he needed talking to. Eventually we’d stop talking altogether.
That summer my brother became a Sick Person. Someone who wore masks in public when mere contact with people was a threat to his health. Someone whose balding head and gaunt face prompted stares or looks of pity. Someone people stopped me —in supermarkets or post offices or bathrooms– to ask about in hushed tones. Someone you tip-toed around with awkward exchanges or Get Well Soon cards. Someone watching life vicariously from a hospital bed. Someone completely eclipsed by his disease.
My mom wasn’t the mom anymore, and I wasn’t the older sister. She was the full-time nurse, responsible for day-to-day care, and I was some kind of patient advocate, spending hours on the phone or the internet, researching medical centers that promised a “cure”.
We were both racing around frantically in Strong Black Woman mode, trying to play superheroes, exhausted and terrified, convinced we could single-handedly keep him alive.
This is why the cultural conceptualization of life with cancer is grossly misleading.
It becomes a “journey”, some stylized montage of personal growth and spiritual revelations to cross off your bucket list.
When in reality, dying of cancer is really just matter-of-fact. Made tragic only by its complete lack of melodramatic glamour. It is lonely. No one comes to visit like they should and you become very aware that the world will continue to rotate just perfectly fine without you.
Or cancer is a celebration of survivorship. Romanticized ideas of “strength” and “courage” that rely on tenets of individual triumph. Where those who live become “survivors” and those who don’t, simply did not fight hard enough.
We call it a “battle”, but once you see it up close it is clearly an act of subjugation. You are really no match for it. It’s malignancy extends beyond the body, and disseminates into the rest of your life. Your family, your friends, your romantic relationships, your wallet, your sense of self, your spirit. It’s dominance is eminent. You submit to it, it makes you it’s bitch. You’re the thing it merely toys with in its passtime, and kills once it is bored.
The last time I saw my brother wasn’t especially dramatic. I was lying in bed, watching him in the hallway as he left for chemo that morning. He was wearing an orange sweatshirt.
That afternoon my mother called to tell me the cancer had spread; his lungs had filled with fluid and his organs were shutting down by the day. She said my brother hadn’t even cried when they told him, just sat there with a strange look on his face.
That weekend his heart stopped during a routine procedure and he was sustained on life support. A week later, on November 4th, 2013, he died in the hospital.
The funeral wasn’t the funeral I would’ve pictured. It was short, and I mostly stared at my shoes, ignoring the perfunctory sermons on “God’s will” . I cried once, toward the end, when it dawned on me that his actual corpse was in that actual box and he was actually gone. and then it all sort of runs together.
The race and class realities that contoured my brother’s illness were not at all lost on me.
I find myself angry at the erasure of his experiences through media that continues to focus on white middle-class youth. Brittany Maynard, 29, dominated recent coverage and became the “face” of the Right to Life movement when she chose to end her life after being diagnosed with terminal brain cancer. Stephen Sutton, 19, (terminal bowel cancer) raised more than 1million dollars after posting his 46-item bucket list to Facebook. Talia Castellano, 14, (lukemia) became a YouTube sensation known for her beauty tutorials and daily vlogs. She garnered over 1million subscribers, appeared on the Ellen Degenerous show, was featured in Cover Girl ads, and has her own non-profit.
But when you are poor and black you are not fascinating enough to the white gaze to warrant that kind of sympathy. You won’t gain the notoriety that immortalizes your suffering. You don’t inspire social awareness or material generosity. You don’t get to be the hero. You die quietly, and no one even notices.
In terms of class, I’m forced to accept that he couldn’t travel to private facilities for (alternative) RMC treatments because our insurance didn’t cover it.
He didn’t always eat the “vegan-non processed-macrobiotic” diet recommended to boost his immune system, because we couldn’t afford to shop at Whole Foods.
His life insurance policy lapsed after my mom was laid off, and after he was diagnosed no company would touch him. We scraped together what we could to pay for his funereal, but with no insurance money, we were left with his bills. Traffic tickets or debt collectors that continued to harass us, even after we’d sent the death certificate.
Most of all, we now shared the financial responsibilities of caring for his daughter Jordynn, who was just three months old when he died.
I wish I could’ve embodied the type of debilitating sadness only middle-class white women can afford. To be Carrie Bradshaw in Sex and the City after Big left her at the alter; taking to the bed for days, whisking off to some exotic island just to clear my head, sipping cosmos with the girls.
Or maybe that my mom could’ve fallen apart like Mellie in Scandal,drinking at noon, forgetting to shower. Sprawled out beneath her sons grave in Uggs and an old bath robe.
But bills needed to be paid, affairs had to be put in order.
My brother thought of himself as a Real Nigga. He’d bought into the sorts of caricatures of black hyper masculinity that made death by disease less desirable. If it were up to him, I think he would’ve rather been murdered in a drive by shooting ,or killed at the hands of state sanctioned violence. To go out with swagger and street credibility.
In his last few months, he was oddly materialistic; buying cars and big screen TVs and flashing money around strangers. He was disrespectful, taking his anger out on our mother and constantly picking fights with me. It was as if, the more power he lost to cancer, he more he sought to compensate elsewhere.
He had to conceptualize his demise in a way that lacked dignity or reverence, a victimhood that seemed almost feminine, that no amount of macho posturing could change.
And I could see him, struggling to reconcile his Tupac-esque delusions of martyrdom with the tangible realities of The End. To admit his greatest threat was not, in fact, all the very real and systematic dangers a young black boy anticipates, but rather something inanimate, which had hijacked his body without warning.
(Dominik and I at ages 9 and 10)
Nowadays I still ask the proverbial Why Me questions. I’ve long stopped believing in a God but I look for answers elsewhere. In the mathematical probability of all the biological, sociological, and individual happenstance needed to produce a disease for which less than 400 people have ever had.
I contemplate chaos theory; questioning the infinitesimal factors that could’ve led to these events, and which, if any, may have produced different outcomes. If the medical research had been more progressive would we have known enough to take preventive measures? If RMC were a white disease how much more tangible would those measures be? Did his smoking habit trigger his genetic predisposition or was it inevitable? If so, would a healthy lifestyle had prolonged the onset? Would that have even been possible given our income? How many of these circumstances could’ve prevented his death? Would any?
The incessant what-ifs still plague me. The reality and hypothesis always running parallel, like a cinematic split-screen in my head.
My expert ability to compartmentalize leaves people to assume that I’m handling it all fairly well. That I’m “resilient”, the type of girl who slays her demons and walks away unscathed. And while it’s true that they have not yet killed me, I haven’t exactly survived:
I live in constant states of irrational fear. Running to the doctors for the slightest bump which I am always convinced is some fatal illness. Or pacing my house at night, checking and double checking the locks, pre-dialing my phone to 9-11 just in case. The certainty that something catastrophic is always looming. That I should be ready this time around.
My perpetual stress has stopped my menstrual periods.
I am periodically suicidal, depressed, and withdrawn.
I suffer from survivors guilt. I stress eat. I don’t leave my house enough.
I wake up often, in the middle of the night, shaken with vivid memories that offset anxiety attacks.
Sometimes I can’t sleep, sometimes I sleep too much.
There are days that I forget he’s died; instinctively turning to tell him a joke or ask a question, like my life is still on autopilot and no one bothered to turn it off.
I’m still bitter and resentful all of the fucking time.
And I am okay with that. In the expectation of Strong Black Womanhood I can unequivocally admit that I don’t have my shit together. I can revel in it. I can create some semblance of self-care that is selfishly, shamelessly mine.
I haven’t done any of the cliche things you’re supposed to do after you lose someone.
I haven’t been to his grave site because I find it morbid and not particularly helpful.
I won’t go to a therapist because I’m not yet convinced that I can find help which isn’t bundled with religious metaphysics or fix-it-yourself bootstrapism.
I don’t talk about him, (not even with my mother) because I know it is likely to ruin my day. Maybe even my week.
I did get a tattoo–his name in Scriptina font on the nape of my neck–but I was gong to get one anyway and it just seemed like the logical time.
But maybe that’s normal. The first year back from hell is really just protocol anyway. It’s about crawling out of psychological atrophy and shaking out your muscles and relearning how to be normal. It’s approaching everything with caution, inspecting the emotional damage by the square inch, because to feel it all at once might actually destroy what’s left of you.
Everyone always makes you think grief is relatively temporary. The thing for which you must stop your life and tackle head-first before the healing can begin. Though I’ve found that grief and healing are not mutually exclusive, but happen simultaneously. Two interchangeable states of transcendence that ebb and flow and intersect and overlap all of the time. I’m healing even when I am grieving, and even when I’m thinking about something else, I am thinking about him. And I don’t exactly know whether either starts or stops, and if it even matters.
Because there is a pain there. A tumor sized, flesh-eating pain which occupies my body, so tangible I sometimes wonder if it bulges through my skin.
But there are also grateful moments.
Afternoons with my beautiful and happy niece where she will every so often remind me of him–cock her head to the side just so, and smile his chubby-cheeked smile–that makes things easier. Even though I know she’s growing up without him, even though he’s missing everything.
There are conversations with my boyfriend, whose love fills me in places I can’t yet reach. A man who’s fathomed my darkest of thoughts and crouched with me in the darkest of corners.
There is my mom, my best friend, with whom I am continuously in awe. Who somehow manages to love fiercely through her greatest heartbreak. Still howls with laughter and plans for the future and inspires peoples lives with remarkable kindness.
Though there is a quiet tension between us. A strain of a family trying to hold itself up with just two legs where there had always been three. One that wobbles and tilts, threatening to fall now that one of them is missing.
There are times she still shuffles from her bedroom, fallen to pieces, wearing his sweatshirt. And I wipe her face and make her laugh, knowing it will never be enough.
Atheist Sam Harris gave a recent talk about the ways in which the fear of death and a lack of fulfillment could be soothed through a commitment to conscious experience. He said:
If you’re constantly ruminating about what you just did or what you should’ve done or what you would’ve done if only you had the chance, you’re going to miss your life..part of us always knows that we’re just a Drs visit away, a phone call away from being starkly reminded with the fact of our own mortality….[some of] you must know how uncanny it is to be thrown out of the normal course of your life just to be given the full time job of not dying, or caring for someone who is….the one thing people tend to realize in moments like this is that they wasted alot of time when life was normal,…they cared about the wrong things, they regret what they cared about…don’t you know there’s going to come a day when you’ll be sick or someone close to you will die, and you’ll look back on the kinds of things that captured your attention and you’ll [think] ‘what was I doing?’
This of course, struck me as incredibly poignant and yet so ironic that I almost laughed.
Because I am now forced to map my life into Befores and Afters. The chronological crossroads for which they diverge now marked by my brother’s death. I get nostalgic for the part Before; the former versions of myself who would’ve been a little happier, would’ve taken less for granted if they’d only known better–but I try not to dwell.
I mostly take Harris’ advice, figuring out how to be present in my life as best I can. Meditating and doing yoga and listening to good music and trying to keep things in perspective. Sometimes I struggle to find the balance between impulse and control. I am either carpe diem, overindulging in the moment, feeling everything with the rawest of nerves. Or I am a rigid perfectionist, obsessed with accomplishment, terrified that time is running out.
I do not necessarily want to move on now.
“Moving on” seems semantically flawed. Too flimsy or fickle a phrase for the worst thing that has ever happened to you. It implies an ability to somehow exist outside the context of your circumstances; which is impossible. The sum of your experiences modifies your personhood. It marks you, and you carry it always.
My brother doesn’t need to mean anything in particular.
I won’t poeticize his eulogy to make it seem more tragic, or offer his death as a “teachable moment.” Perhaps in my own futile search for “closure”, I need to contextualize his life. To that prove that he was here, and that he mattered. I only want to tell his story because I know that no one else will. And as someone who loved him, I owe him at least that.