Last October, I read about a friend’s cancer prognosis in the New York Times:
When I had my first surgery six years ago, the medical team was hopeful. It looked as if I was going to make it for a few years. Then a year ago, I had another surgery. When Brian was sitting with my neuro-oncologist, he asked about my future. Dr. Friedman said, “She’ll probably have another three years.”
Brian’s face began to melt. It was a mistake to ask. Now he knew and I knew, and there was no way to put it away.
The article—a guest column for Motherlode, written by Alison Piepmeier—was entitled “What Does my Brain Tumor Mean for my Life as a Mother?” Alison’s daughter Maybelle is seven. Like my younger daughter, Laura, Maybelle has Down syndrome. That’s how Alison and I met, albeit at a distance: I’d written a memoir about Laura and asked Alison to review it on her blog, Every Little Thing. Alison called my book “a memoir that doesn’t enrage me,” the best review the book has ever gotten, and in time we became friends. She lives in South Carolina, and I live in Oregon, but we’ve gotten to visit at conferences, usually over fried or deep-fried food. At the American Studies Association meeting, in D.C., it was burgers at Five Guys. Last June, at the Society for Disability Studies meeting in Atlanta, it was Gladys Knight’s Signature Chicken and Waffles. I drank beer. Alison stuck with Sprite, because of the chemo. Blogging about the conference day, she reported that I had been promoted to “non-romantic boyfriend”: “Hello, George. Welcome to stepping into a more important role in my life.” (“Alison is all out there,” my wife noted.)
Alison is a feminist, a professor, a Star Wars geek. She is an activist comfortable with a megaphone. Though she once wrote an article for The Charleston City Paper entitled “The Benefits of Being a Bitch,” she’s also one of the warmest people I’ve ever met, able to talk to people across the political spectrum, curious about alternate views, even to the point of dissecting, cataloguing, and reflecting on the nearly five hundred comments — many of them hostile — that followed her 2013 Motherlode column entitled “Outlawing Abortion Won’t Help Children with Down Syndrome.” I asked how she managed it, and she shrugged, saying, more or less, that she just detached herself and treated the project as research.
I didn’t know Alison’s prognosis before I read the Times piece. I knew about the tumor, and I knew she was undergoing chemo again. The news was better than I’d feared, worse than I’d hoped.
I shared Alison’s column on my news feed, where an essayist I know commented, “Straight to the bottom of my gut. This is so raw and aching and wonderfully written.” It being Facebook, Alison replied. Alison, Alyssa; Alyssa, Alison. I was glad for the brief exchange: my disability studies friends and my nonfiction friends rarely interact. But it was strange, too, a disembodied conversation about the body, real feelings in virtual terrain. The terra infirma of the Internet, where place dissolves, and a whisper can be heard everywhere at once; where you talk to everyone first, and then to someone. Where you begin with mortal things and end in pleasantries.
Alison’s essay is raw and aching and wonderfully written. It’s also different from most of what she’s written. Its voice is familiar — the energy, the need to connect —but it’s sober and spare. As if, facing a predicted fact, she had concentrated everything she is, her activism, scholarship, personality, love for her daughter, fears for the future, into a precise, bright focus. I imagine an acetylene voice before a vast iron wall. The wall is not death, which we all face, nor the understanding that we face it, which we all have, but the weight given to that understanding. It is knowledge made dense by prediction.
Alison is a scholar, with two books to her name. But despite the dry overtones of that word, scholarship for her seems less a cubicle in a library than a room full of books in a house, something inseparable from daily life. Narrating her experience, as a parent and patient; writing about how disability is represented; interviewing women who’ve received a diagnosis of Down syndrome during pregnancy; blogging about a conference, a visit home to Tennessee; writing for the Charleston City Paper; all seem to be part of the same effort. They are acts of communication motivated by a deep wish for justice and fairness, and an almost-physical understanding of the idea of interdependence, the way different lives, able and disabled, are woven together.
“Interdependence” is a key idea in disability studies, a useful alternative to the fiction that we are all “independent” or “dependent,” makers or takers. Like a lot of theoretical terms in the field, it’s dry-sounding and visceral at once. In Alison’s essay, interdependence appears in a visceral image — Maybelle, fingering Alison’s plastic port, into which chemo is dispensed — and as a set of unanswerable questions:
How can I take care of her when I may be so exhausted that I won’t be able to pick her up from school? How will I feel when Brian and Maybelle are having dinner and I’m asleep? She can be difficult to understand: Who will listen to her, follow her communication, be able to share it with others? Will other people see Down syndrome as simply part of who Maybelle is? And see her needs? Can I work hard enough that I can keep every possibility open for her — even if I’m not here to fight for her?
Can I do enough? What is enough? What should I be wishing for, now?
For parents of school-aged children with disabilities, questions like these are real but in the background, a distant surf. I think that for Alison, they look more like a giant wave rearing up. We can count on our families and friends to love our children, to take them as they are, to understand that what others call “abnormality” is their way of being human. But we cannot count on that perception in the world. We want the world to be that good, and it’s getting better, but it isn’t yet, not by a long shot. In the long term, we try to improve the world, and in the short term, we rely on the people we know, a network of friends near and far.
Having a child with a disability is potentially isolating. Paradoxically, my own network of friends has become broader, deeper, and richer, because of the child at its center — or, more precisely, because of the reaction that child catalyzes, the impulse to reach out, to bear witness. Since the chromosomal nondisjunction with which Down syndrome begins is distributed evenly across human groups, it tends to create distributed communities, defined less by place, religion, or political affiliation than by a common conviction of value, a sense that the child in the center matters, that the child won’t be a child for long, that the adult she will become deserves the same sense of belonging, the same kind of community, she has helped to create.
In my own distributed community, I cherish a few friends, like Alison, from whom I’ve learned a great deal: like-minded people thinking about people with unlike minds, about the place of intellectual disability in our intellect-obsessed culture. Writers, trying to do some good, wondering how much good writing can do.
In October, the neuro-oncologist’s guess was three years. But on March 30th, Alison wrote,
The brain tumor is growing. Fast. For months, since September, the chemo was working. The tumor had stabilized. It was great! And now, in March, everything has changed.
The blog post is titled “Changing my body would help and terrified me.” (Alison’s tumor has affected her language; she’s written about this movingly, and has deliberately left “errors” in.) In the same post, she wrote that she might try the OpTune, a kind of electrical skullcap.
That involves all my hair being cut off and my entire head getting covered with electricity. Hello, writing folks! If my writing gets into gear, I am going to write about this. Best friends? You are some of my writing team.
She wondered what it might be like — “No kidding -I’ll be living with Maybelle while I’m covered in electric blopps” — and, on April 18th, she posted a picture of herself wearing the OpTune:
I sit here, four wires attached to the backpack attached to me. My neck is starting to get sore because I don’t want to have to shift these wires around.
Just stay here, pack of electronic cables. I want to ignore, just for a time, what this means.
On May 1st, Alison wrote, in a post entitled “Marriage!”:
In my life these days, I never know exactly what’s going to happen. I’m beginning a list — the joy list — and Brian clearly belongs there. Here we are: we’re both here and in love.
Soon afterward, I emailed Alison to ask her permission to write this essay. She wrote back right away, giving consent: “Any thing you’d like is fair game—I tend to be public anyway. You are more than welcome to do this.” But she also wrote that, though we’d emailed about co-authoring an essay, “at this point I’m going to give you a hug and tell you that we won’t be writing together . . . I know I told you that I have such a short amount of time. I want writing to be a joy from you!”
A week ago, on June 16th, Alison wrote,
I’m dying. That’s confirmed. That’s the bottom line for today’s post.
She recounts a visit to Duke University Medical Center. She notes the acceleration of her symptoms, the brief history of treatment, her ineligibility for clinical trials. She then explains, in short, categorical paragraphs:
I will have more time to think this through over the coming weeks. This is what I know:
I will have no more appointments at Duke. These amazing, kind people can’t do anything more for me.
I will spend my remaining time with the people I love.
It is about time for Maybelle to learn how to ride a real bicycle. I’d like to see that happen this summer.
From now on, I am eating anything I damned well please.
Grief is a black hole, a gravity well, but it’s a category error to grieve for loved ones who are here — to dwell on absence, ignoring the warmth and light of the burning present. I’ve learned a lot from my friend. I’m still learning.
Avidly is honored to publish this tribute to Alison Piepmeier
Images courtesy of Alison Piepmeier