When disabled folks talk about crip time, sometimes we just mean that we're late all the time—maybe because we need more sleep than nondisabled people, maybe because the accessible gate in the train station was locked. But other times, when we talk about crip time, we mean something more beautiful and forgiving. We mean, as my friend Margaret Price explains, we live our lives with a "flexible approach to normative time frames" like work schedules, deadlines, or even just waking and sleeping. My friend Alison Kafer says that "rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds." I have embraced this beautiful notion for many years, living within the embrace of a crip time that lets me define my own "normal."

And yet recently I have found myself thinking about the less appealing aspects of crip time, that are harder to see as liberatory, more challenging to find a way to celebrate. Now in my forties, as I reflect on my life, these other ways of looking at crip time have been pressing deeply, leaving their mark.

I keep returning in my mind to a moment in a doctor's office in the summer of 1995. I was twenty-three years old and had recently entered the world of disabling illness, had crossed some invisible and excruciating threshold from being someone with health problems to being a problem, apparently insolvable. I had come to this doctor, a psychiatrist, after many months and many doctors, searching for a diagnosis to explain my constant pain, weight loss, wavering legs, and thumping heart. Like the others, this doctor didn't have an answer. What he did offer, though, was remarkable compassion and a willingness to listen.

What I keep coming back to is this one thing he said to me. "You've lost so many things already in your life: your parents, your health, your independence. You have a level of loss we would usually expect to see in someone in their seventies."

Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings. Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get. The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, and the terminal, of relapses and stages. But we who occupy the bodies of crip time know that we are never linear, and we rage silently—or not so silently—at the calm straightforwardness of those who live in the sheltered space of normative time.

I swim in the warm water therapy pool at my gym, usually accompanied by men and women in their sixties and seventies and eighties. They give me sideways glances, sometimes hostile, sometimes curious: Why are you here in our space? Why aren't you in the regular pool with the other young-looking, healthy-looking swimmers turning in neat laps back and forth? I smile at them, I answer their questions politely, but here's something I rarely admit:

I hate them.

I hate them when, after demanding my bodily narrative, they give me their own: how they've finally had to give up cross-country skiing at age 62, how frustrating it is they can't go hiking any more. I hate them for their decades of proper health, for their unconscious privilege, for the fact that only in older age are they contending with not being able to hike, or bike, or knit, or whatever it is they're talking about as they move in their little companionable knots around the pool. I know that I'm being unfair. I know that I know nothing about their lives, what they may have lost. So I keep my rage inside.

I keep my grief inside.

Crip time is grief time. It is a time of loss, and of the crushing undertow that accompanies loss. I lost my mother when I was twenty and she was fifty-two, to a cancer that she had lived with for fifteen years. But those numbers don't say anything about the way the days slowed and swelled unbearably around her death, or how the years piled up afterward, always too much, never enough. When I fell ill just two years later, both doctors and relatives wanted to believe it was the result of my stored-up grief, my refusal to stop mourning my mother and move on with my life. Freud wrote in "Mourning and Melancholia" that "normal mourning" resolves on its own and needs no intervention. Only melancholia is a true illness, mourning without end, without resolution. The bodymind refuses to let go of the lost object, and deforms itself in the process.

But I was able to let go of my mother, earnestly as I miss her. What I have found much harder to let go is the memory of my healthier self. With each new symptom, each new impairment, I grieve again for the lost time, the lost years that are now not yet to come. This is not to say that I wish for a cure—not exactly. I wish to be both myself and not-myself, a state of paradoxical longing that I think every person with chronic pain occupies at some point or another. I wish for time to split and allow two paths for my life and that I could move back and forth between them at will.

In Arranging Grief: Sacred Time and the Body in Nineteenth-Century America, Dana Luciano traces how grief time emerged with modernity as a temporal and affective state juxtaposed to progressive, mechanical time. She writes that "grief was aligned with a sensibility that sought to provide time with a 'human' dimension, one that would be collective rather than productive, repetitive rather than linear, reflective rather than forward-moving." This sounds very much like the notion of crip time that Alison and Margaret were talking about. But disability scholars like Alison, Margaret, and I tend to celebrate this idea of crip time, to relish its non-linear flexibility, to explore its power and its possibility. What would it mean for us also to do what queer scholar Heather Love calls "feeling backward"? For us to hold on to that celebration, that new way of being, and yet also allow ourselves to feel the pain of crip time, its melancholy, its brokenness?

For crip time is broken time. It requires us to break in our bodies and minds to new rhythms, new patterns of thinking and feeling and moving through the world. It forces us to take breaks, even when we don't want to, even when we want to keep going, to move ahead. It insists that we listen to our bodyminds so closely, so attentively, in a culture that tells us to divide the two and push the body away from us while also pushing it beyond its limits. Crip time means listening to the broken languages of our bodies, translating them, honoring their words.

A year after I sat in that psychiatrist's office, learning to recognize what I had lost, I was back on the path once again to health, or to what I wanted to believe would be health. I was practicing tai chi every day, learning how to move slowly and gracefully through the world, as part of a group all making the same movements, synchronized, flowing. I felt more at home in my body, with other people's bodies, than I ever had.

Then it all came apart. My tai chi instructor kept explaining to me how to align my hips, kept looking at me quizzically and saying, "I don't know what you're doing that's wrong." Then one day, at home, I reached up for a book on a shelf and felt my hip separate from my body, pain zinging down my leg which quickly turned numb. It happened in a flash, and it also lasted forever. It took me six long months in physical therapy to get back to where I could walk more than a few steps, and I was never again able to walk as far as I had before. Tai chi, which I loved deeply and which was supposed to fix me, broke me instead. It moved in one direction and my body moved in another.

And so, I moved backward instead of forward, not into a state of health, but further into the world of disability, the world I was now coming to understand as my own. I moved from being someone who kept getting sick, over and over, to someone who was sick, all the time, whose inner clock was attuned to my own physical state rather than the external routines of a society ordered around bodies that were not like mine.

Crip time is sick time. If you work a 9-5, 40-hour-a-week job, what is defined as full-time work in the United States, then (if you're lucky) you accumulate a certain number of sick days. There is always a strange arithmetic to this process: maybe for every eight hours you work, you accrue one sick hour. Or maybe one for every twenty work hours, or every forty. It's never a one-to-one ratio: you have to work hard to earn the time to be sick. The assumption, of course, is that we will not be too sick too often.

When I realized I could no longer physically sustain a 9-5 job, I feared for my future. I hadn't even worked long enough to be eligible for Social Security disability. The solution I came up with was to return to academic life, to go to graduate school and get my Ph.D. and maybe, if I was lucky enough, to become a professor. It was, and still is, the only way I could see to support myself in crip time.

Most of my time in graduate school was sick time: for the first two years especially, all I could do was drag myself to an occasional class and write the papers required for them. My life consisted of going to campus and to the grocery store and then returning home and doing schoolwork. I worked lying down as much as possible, in the days before lightweight laptops and wireless internet. I lay on the floor in my classrooms and stared at the scratched undersides of desks while my classmates talked.

And I loved it. I loved the rhythm of reading and writing and thinking and I realized that this time was also my time, even though it was hard, even though other people didn't get it, even though I was alone.

Crip time is writing time. I have been writing an essay about crip time, in crip time, for so many years now, I wonder if I will ever get it done. In it I quote from author Laura Hillenbrand about writing her best-seller Seabiscuit while gravely ill with chronic fatigue syndrome:

Because looking at the page made the room shimmy crazily around me, I could write only a paragraph or two a day. When I could no longer stand the spinning, I'd take a pillow into the yard and lie in the grass…. When I was too tired to sit at my desk, I set the laptop up on my bed. When I was too dizzy to read, I lay down and wrote with my eyes closed.

Hillenbrand's essay about her experience was published in The New Yorker, where it became for a brief time the touchstone for a certain segment of the educated public to apprehend this mystery illness and, by extension, the world of chronic illness. Her status as a best-selling author lent her story a kind of credibility many of us in the chronic illness community had been struggling for for years.

Hillenbrand was able to write her way into cultural validity, although she remained a physical invalid. I can't count the number of times people asked me, in the wake of her success, when I was going to write a bestseller. As if that would be the ultimate achievement, the perfect solution to my bodily failures, to write something that Oprah Winfrey might pick for her book club—even if, like Hillenbrand, I was too sick to actually make the talk show rounds.

If I were to write a best-seller, though, I think it would be about vampires. Zombies seem more in vogue these days, and I do often feel like a zombie—especially if I've had less than ten hours of sleep—but still, I think, vampires. Because crip time is vampire time. It's the time of late nights and unconscious days, of life schedules lived out of sync with the waking, quotidian world. It means that sometimes the body confines us like a coffin, the boundary between life and death blurred with no end in sight. Like Buffy's Angel and True Blood's Bill, we live out of time, watching others' lives continue like clockwork while we lurk in the shadows. And like them, we can look deceptively, painfully young even while we age, weary to our bones.

My own disabling condition, a genetic disease, means that the collagen in my body doesn't hold its shape. This is bad news for my joints and tendons, my heart and my gut—but great for my skin which remains soft and wrinkle-free into my forties, meaning I'm perpetually mistaken for being younger. One of the medical criteria for my condition is, literally, having skin "like velvet." In our youth-obsessed culture, vampiric agelessness is often seen as a good thing, and it does come with certain privileges. But I sometimes tire of not being taken seriously, of working my sick self into the ground to climb the tenure ladder while being perceived as a perpetual graduate student.

And on a deeper level, being a crip vampire spins me back into that whirlpool of time travel. I look 25, feel 85, and just want to live like the other 40-somethings I know. I want to be aligned, synchronous, part of the regular order of the world.

Like the leaves just now turning as the year spins toward its end, I want sometimes to be part of nature, to live within its time. But I don't. My life has turned another way.

I live in crip time, now.