John McCain has brain cancer.
That’s a shock to his family, his colleagues, and the millions who know McCain to be a principled man who has long served his country with honor and dedication.
For those who have known this particular type of cancer ― glioblastoma ― McCain’s diagnosis is more than a shock. It’s a death sentence of unknowable duration. I write from experience. My father was a long-term glioblastoma survivor.
Until he wasn’t.
My dad was diagnosed at 58 and lived nine more years. On the morning of December 5, 2005, my father was his usual gregarious self. By that afternoon, affected by brain swelling and a tumor, the person I knew left, and never came back. My father lived as long as he did, changed in almost every way, through a combination of luck and responsiveness to treatment. He also lived until February 2015 because he had a loving caretaker in my mother.
And he lived for another reason. He had privileged access to the best health care. He had the funds to travel across the country for consultation with the doctors at the Preston Robert Tisch Brain Tumor Center at Duke University. He could afford to live on his 401k and disability payments.
For a disease that has a median survival rate, per the New York Times, of only 12-to-18 months and that claims about 75 percent of patients within 3-to-5 years, nine years is an astounding time to survive. Yet the question of what it means to “survive” glioblastoma—for months or years—is a question worth reflecting upon.
“We loved my father until the end, but the end took its extended toll upon all of us.”
My father’s near decade as a brain cancer patient was not a battle. As I wrote in his eulogy, “it was not a war he had to fight. He was not a soldier against the invading armies of disease. Cancer is a fact. That is all it ever can be.”
The onset of illness is often the time for magical thinking ― I cried as the amazing Dr. Henry Friedman at Duke called to tell me that “he could help” ― but we must not forget the facts of the body.
We must not forget in all our talk of “beating cancer” that the body is fragile. We must not forget that the body and its needs determine everything we do. We must not forget that what we think of ourselves and how we construct our identity are directly impacted by the condition of our bodies. We must not forget that brain surgery, chemotherapy, and radiation fundamentally change our bodies.
The change is different for everyone, of course. For my father, what we call “thinking” quickly degraded so that a man with a Masters Degree in United States History could barely follow the plot of a network television drama. His condition could sometimes prove hysterical, as with his aphasic moments, such as the time he told me he was “laughing your ass off.” My ass. It was a slip but an apt one. His ability to direct his life had long since departed.
As I would lift him from the bathroom floor at 3 a.m. after a fall, or as he told me he loved me often (as he never did before his illness), or as I watched his eyes slit toward their final closure in the minutes before his undignified death in a rehabilitation facility, I would consider what survival means. We loved my father until the end, but the end took its extended toll upon all of us.
Glioblastoma is unlikely to end any differently for John McCain than it did for my father, or Ted Kennedy (who shared the same doctors as my dad at Duke). In McCain’s case, we certainly expect to find someone like Mitch McConnell commenting that “[McCain] has never shied from a fight.” After all, it’s comforting to think that McCain will “beat” cancer and come back. Stronger. The fight against all forms of otherness is a fundamental American narrative, and as such, it fits nicely atop the way we think about cancer as a “fight” and, in particular, as a disease that must be beaten.
I wouldn’t trade the extra years with my father for anything, but it is a nostalgic mistake to think “survival” means the same thing for everyone. It is a worse mistake to think “survival” is unrelated to relative wealth and access to resources, or, even with those resources, that “survival” is even universally desirable.
At the same time that Donald Trump and segments of our government look to strip from or reduce health care for millions of Americans, we rightly mourn this news about a man in the government whose health is also about to be stripped away.
But cancer doesn’t care if you are for or against Obamacare. Cancer doesn’t care if you favor single payer or not. Cancer doesn’t care if you repeal now, and replace later. Cancer, though, may well care, if only for an unspecified period...if you can access proper care, medicine, and money.
Please don’t misunderstand. I hope that ever-improved treatment can change a glioblastoma diagnosis from an inevitable end to a possible sustain. I hope that John McCain’s disease leaves his body and mind as functional as possible, for as long as possible. And I don’t wish what my family went through, or what my father suffered, on anyone.
I also hope that Mitch McConnell and others might realize that one of the reasons McCain can “fight” so hard to “survive” is because—like my father—he has access to quality health care. Then, I hope we might be ready to talk about what it means to be called a glioblastoma survivor.
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Davis Schneiderman is a writer and Associate Dean of the Faculty and Director of the Center for Chicago Programs at Lake Forest College. He has written extensively for HuffPost and other venues about his father’s brain cancer. He is currently working on a performance piece about the 1968 Chicago Democratic Convention for a September performance in Paris, as well as sound design for Hard-Core Corn, Kelly Haramis’ one-woman show at the upcoming Chicago Fringe Festival.