What the World Gets Wrong About My Quadriplegic Husband and Me

They imagine I’m his “caretaker,” a loaded word, veritably stuffed with presumption.

“How do you bear it? That must be devastating,” a colleague said, pausing over his chicken salad sandwich. I’d mentioned that my husband was a quadriplegic—always a risky choice. That is, if I want lunch to be short.

With a familiar tightness in my chest and an intake of breath that felt sore, even my throat protesting at having to exercise the same tired muscle to answer the same tired question: “It’s not. We do just fine.” He lived alone long before I met him, I wanted to say, and He’s a theatre professor, and lots of things that I knew would only sound defensive.

The lunchroom was too noisy, anyway, to explain further. My coworker read my near silence as an admission (of what, I’m never sure: sexlessness? Solitude? Nights spent gripping a bottle of gin?), and said, earnest, “I’m so sorry you have to go through that every day. I can’t even imagine.”

I watched the nightmare in his eyes retreat, replaced by a glaze of pity, a softness that I suppose he felt was earned by my hard life. “It’s honestly no big deal,” I tried again. Too late. The glaze had acquired a sheen.

The politics of disclosure are tricky, and once again I felt I’d done my partner a disservice, however slight. Though my coworker likely no longer thinks of me, he might think of my husband occasionally: Perhaps he watches a Lifetime movie after the kids have gone to bed, or Me Before You with his teenager who read the book. (They’re all mostly the same, very little of it good.)

His ex-coworker’s husband, now part of his mind map’s constellation of wheelchair users and those who love them, might drift by as a data point, confirming his hypothesis about the pity afforded them—all because I didn’t work hard enough to convince him otherwise. I didn’t tell him about the day my husband and I met to study together for grad school exams at ten a.m. and coffee turned to whiskey turned to singing in a round as he drove me home, or his first gift to me after two weeks of dating. Jumping eased my anxiety, I’d told him. He showed up to my door the next week with an indoor trampoline.

We all have collections of stills in our minds, people we gather as representatives of groups we don’t fully understand: a fervent doll-collecting aunt, the neighbor’s boyfriend who had that rare disorder. They, along with predictable images in the media, form image clusters that make up prototypes, patterns from which we will only deviate if we’re radically convinced. Now that I’ve disclosed his quadriplegia to yet another stranger, added his image to the stack in my coworker’s internal card catalog, my husband is no longer afforded idiosyncrasies or individual traits—someone who writes me love letters and teaches improv and is very Virgo about our towel situation, and who, unlike me, is quiet and unassuming in grad seminars. As we parted, I wondered: Would my colleague go home, now, and express gratitude to his wife, “Thank God we’re not them” the subtext?

*

Despite the presumptuousness of my colleague’s words I knew something of what he assumed, because it’s what many assume: I must be up nights, washing the last of the dishes alone, filled with longing that my husband’s spinal cord will awake from its tragic slumber. Or maybe they imagine I’m his “caretaker,” a loaded word, veritably stuffed with presumption. It assumes unidirectionality.

The truth? I haven’t cooked one meal this month (too many deadlines), he usually stays up with the baby (I’m a morning person), and he’s spent far more time serving as my lay psychiatrist and priest-behind-confessional-screen (atheists need them too) than I’ve spent on any of his medical care. He sings me to sleep. I am usually a nervous wreck about everything except his paralysis. Unlike my symptoms of anxiety and depression, his disability is a constant, the only thing that isn’t a what-if. I am not good with what-ifs.

I’ve been grateful for the current dialogue about emotional labor and its gendered way of overburdening, though I’ve regarded it somewhat sheepishly, embarrassed to chime in. I don’t remember appointments, I’m the household member voted Most Likely to Leave Out the Dishes Indefinitely, and I certainly don’t make the bulk of the phone calls. Still, being the ostensibly able-bodied partner to a physically disabled person comes with its fair share of emotional labor.

Emotional labor, in many cases, involves the management of feelings, both your own and others’—and the spectre of the wheelchair evokes many. At restaurants, hostesses’ eyes fly open, anxious, before they whisper to each other—where are they supposed to go?—and folks trapping us in the wheelchair van by parking in a loading zone look sheepish at best or, sometimes, defiant: What’s so special about you? 

It comes in the form of tensed shoulders and questions, everyday tasks turned into interpersonal obstacle courses: Is the usher going to know where to seat us? Will we be turned away? Will the doctor actually speak to him, or will she look over his head and into my eyes instead? It’s watching someone else be hurt and disappointed—not by an internal source, like my depression, but by others, by buildings, even—over and over again, and being powerless to do anything about it, to unwind the tension that coils in someone’s back when they are expected, day after day, to prove they are not a burden.

It’s your own sadness, your own needs, all being retroactively attributed to something from which he has recovered every way but physically—which is the only way that matters in the cultural narrative you’re expected to play out.

It’s keeping the strained smile on your face when, after your partner plans an anniversary dinner at a restaurant that advertises itself as accessible, you find out that “accessible” means that some people get helped up the steps to the only entrance. The manager offers to have a busboy carry him. “My chair weighs three hundred pounds,” he says, incredulous. The manager shrugs, as if to say, So? What did you expect?

He’s now supposed to spend tonight apologizing for taking up space, and you are supposed to pretend you don’t notice. He defends himself well, as always, but his shoulders slump and his eyes shine with hurt, even over cocktails elsewhere after you leave. You want to scream at someone, or at least write a strongly worded letter, but there is no one to write to.

It’s being afraid; not of a disability itself, but of everyone else’s fear and discomfort, which is displaced onto you as the assumed caregiver. Don’t look at me like that, I want to say to the pitier. Just build a damn ramp.

*

As for me, the chair is inextricable from lived reality, impossible to untangle from the web of our shared life. I can’t divorce it from memories of care I have taken rather than given, of reciprocity: Rides on his wheelchair put our daughter to sleep, and when I was pregnant, I rode on his lap to work. During a depressive episode or a panic attack, I’ve heard the whirr of wheels (footsteps, really) in the hallway and felt my breathing slow; he was home. This is not part of the wheelchair story strangers and Hollywood and breathless romances want to tell.

I wrote a story about my depression and PTSD against the backdrop of a ghost town in a desert we’d visited and shared it with a creative writing workshop. I included one line about his paralysis. “Is his body supposed to be the desert?” one of the other students asked. “Because it’s empty now, since the injury?” Another says, “It’s a ghost town. Is he the real ghost?”

Being in love with a quadriplegic is something like loving a ghost, but not in the way people might think: He is at once invisible and, if seen, there is just one thing about him that most people seem to notice. A story with a ghost in it is a ghost story first and foremost, not a story about sports or romance or a family conflict. Similarly, the wheelchair, that eternal evoker of public feelings—fear, pity, inspiration—functions as the axis of every narrative we can construct, around which everything else turns. Even though you don’t want it to, the wheelchair becomes the protagonist, the antagonist, and everything in between.

*

When I lie awake at night, the honest-to-god truth is that I don’t fantasize about miracle cures and redemption songs. I dream of ramps. Ramps leading up to showers and houses and waterfalls, to haunted hayrides and carriages and job interviews and Capitol Hill. And level ground that fulfills its rhetorical purpose by keeping everyone on the same plane. In my dreams, words become divorced from their meanings; “rustic” and “quaint” become extricable from “tiny” and “crowded” and “winding,” and “exclusive” no longer means a narrow stairway down to an underground speakeasy. Restaurant hostesses and flight attendants are not afraid. Doctors listen.

In my dreams, I don’t watch him walk. I watch him stop being hurt.