My eyelashes are mascara-less stumps and I’ve been commando in the same stained, hot pink sweats for 36 hours, but I don’t care. It’s 2011, and my mom and I are at my grandmother’s house in Michigan hoping for some rest after a hellish year spent cycling through chemo, radiation, and surgeries.
Set on a quarter mile cul-de-sac, the condos are built into a gentle slope where the elated cries of grandchildren echo as they race across the shared backyard. Beyond the lawn, families and fishermen float down the shallow river in inner tubes or boats beneath the canopy of ancient oaks and elms that line the riverbed. This year, the river is so shallow that the children step into the centers of their inner tubes to carry their portable yachts to avoid rocky butt scrapes, the water lapping around their ankles. I want to puke.
At gramma’s, I don’t try to keep up appearances. I forgo foundation, scarves to hide my bald head, and the pretense that undergoing chemo, radiation, and a stem cell transplant was some kind of backwards blessing. I think I’m safe from the usual painful judgments about how a cancer survivor should behave. I’m not.
In my boyfriend’s dreary basement apartment, I’d spent weeks wrapped in a blanket in front of the television, only moving when I needed to go to the bathroom to vomit. I haven’t mustered the energy to visit with even my best friends, because the effort to choose a non-itchy outfit and then follow conversation is too exhausting.
At a lunch date with several other cancer survivors, now close friends and confidantes, I sobbed into my Thai chicken pizza as I tried to explain my frustration that I wasn’t feeling better—Carina was back to normal three months after her transplant—and the insistence of ‘healthy people’ that, to survive, I need to be more positive.
The vehemence with which people insist that “positivity is the best medicine” when they catch wind of my misery—not difficult to sniff out since I’ve got one major silent-but-deadly depression cloud following me—makes me want to explode. “Chemo is the best medicine, motherfuckers!” I should shout but I don’t have the energy. The haters are making me doubt the data that says high stress-levels, chronic depression, PTSD, and other traumatic life events are statistically unrelated to developing cancer.
I am relieved for the distance from D.C., but disappointed that even my grandmother’s home, a place that usually elicits an internal sigh of relief and quiet joy as I gorge on peanut-butter-slathered English muffins while watching the birds breakfast on the feeders beyond the breakfast nook windows, is shrouded with the same gloom that has crept over everything like a moldy film. The thoughts—that I am undeserving of the outpouring of love and support from friends and family, the hundreds of thousands of dollars in medical care, or even the surviving this cellular cluster fuck—won’t stop.
My relatives are obviously disappointed too. I think that they expected me to exude the upbeat attitude of the survivors on television commercials, donning pink ribbons and walking marathons, declaring a new lease on life. Cancer patients are expected to be poster children of a movement, meant to reassure the masses that this plague, and even imminent death, can be overcome with positive affirmations and attitude adjustments. We are a society that believes in control, to the point of delusion. We are a nation founded on the idea that any obstacles can be surmounted and dreams reached through hard work and self-control. I am the unpleasant face of cancer. I am not accepting pain and loss gracefully. I am a disappointment.
Our family friend, who I call Uncle Ron, arrives unannounced to gawk at cancer’s wreckage and to gather intel he assures me he’ll keep secret from the little old biddies at assisted living. I trust him as much as I’d trust Edward Snowden. He’s hoping for a glimpse of a gray-skinned and starving husk of a twenty-nine year old but besides that my scalp and face look Brazilian bikini waxed, I appear the same.
“How are you?” he asks.
“Good.” I shrug. I’ve decided to try not to give him what he wants.
“How are you feeling?”
“Not great,” I say.
He takes the opening to lecture me on the importance of optimism, encouraging me to be grateful for the life God gave me.
I start crying.
His eyes well up too. He smiles and keeps repeating, “Choose positivity. Choose happiness,” before pulling me in for a hug. Did everyone really believe the depression was choice? Did they believe I’d given myself cancer too? Did I give it to myself?
Of course, one of my worst fears was that the positivity pushers were right. I was sick because I couldn’t keep a shit-eating grin on my face throughout an adolescence fraught with familial drama and long depressive episodes, or because, while I lived in New Zealand, I secretly sobbed for six weeks when I should have been hitchhiking to the ski slopes or hiking fern-lined trails, or because of the many mornings when my heart raced, dreading my looming day ahead teaching at Brooklyn high school. Maybe these numerous blue periods all added up to cancer.
Uncle Ron didn’t seem to consider the year-plus of chemotherapy—so dangerous that the oncologists administered it through plastic tubing surgically forced through my veins; a treatment that filled my mouth, labia, and anus with sores that bled and left me barren—might also have affected my hormones and brain chemistry, not to mention destroyed my faith that somehow I would live forever. He thought I was depressed by choice.
In his memoir about a depressive episode he suffered, William Styron writes of others’ attitudes towards depression, “[S]uch incomprehension has usually been due not to a failure of sympathy but to the basic inability of healthy people to imagine a form of torment so alien to everyday experience.” My Uncle Ron could not imagine the depth of my suffering. He saw my depression, so deep that I could barely bring myself to engage in small talk or string words into coherent sentences, as a sort of adolescent foot stomping, an excuse to feel sorry for myself. He was sure that with a little cajoling, I could pull myself up by the boot straps and become the vivacious niece who relayed stories about hopping on the back of an English ex-pat’s motorbike in a Thai island jungle without hesitation.
Ron was also motivated by fear. Many people want to believe that cancer can be overcome with enough willpower and exuberant positive affirmations. The notion that we can control cancer by dieting—cutting gluten, dairy, GMOs, and alcohol from our diets or binging on kale juice, green tea, and soy—has trickled into Facebook feeds and taken over targeted ad space. We feel more in control of our lives if we believe sick people got that way by making bad choices. This hopeful but woefully misguided belief that if the cancer patient eats like a Paleolithic person or ignores her fears, she will ‘beat the odds,’ denies patients the freedom to mourn the loss of her old self—because cancer almost always kills a more fearless version of ourselves.
The truth is we don’t know why this shit happens. In an interview with The Guardian, Siddhartha Mukherjee, author of the ‘cancer memoir’ The Emperor of All Maladies, says, “In a spiritual sense, a positive attitude may help you get through chemotherapy and surgery and radiation and what have you. But a positive mental attitude does not cure cancer—any more than a negative mental attitude causes cancer.” We need to stop blaming cancer patients and start supporting their emotional needs. We can’t stop time. We can’t control most of life’s plot twists. We can embrace the unexpected, and give a patient a shoulder to cry on so that she can face her disease with genuine hope and realistic expectations.
Lauren Sczudlo is a teacher, burgeoning author, and nap enthusiast. She is writing a memoir that examines her priorities as twenty-something year old before the cancer diagnosis – falling in love, screwing up, crying about screwing up, and pleasing other people – and after – falling in love with her life. She lives in Washington, DC with her boyfriend and two cats, Nico and Cricket. Follow her on commentary crayZCricket.kinja.com.
[Image by Jim Cooke]