Abstract

In this creative nonfiction essay, the author discusses "care time" as the liminal place between crip time and abled time. They discuss how their role as a care partner to a spouse with a disability has changed their own relationship to time, to community, to life, and to love.


As a care partner, I am a human alarm clock. My husband Gary has advanced Young Onset Parkinson's Disease and the cognitive changes associated with Parkinson's make it hard for him to remember to take the very meds that ensure his functioning. We've tried apps. We've tried alarms. But the only system we've found that reliably works for long periods of time is me: me texting or calling or reminding him in person to take his medications four times each day. The need to be his med alarm marks the rhythm of my day. No matter what else I'm doing—talking with students, sitting in meetings, eating with a friend—I reach for my phone at 8:00 am and 12:00 pm to remind Gary to take his meds. "Did you take meds yet?" is one of the first things out of my mouth when I come home at 5:00 pm, and one of my last thoughts of the day at 10:00 pm.

My role as an alarm clock is not the only way in which my relationship to time has changed since becoming a care partner. I live in care time now: a liminal place that shifts location between crip time and abled time in a complex, unpredictable dance.

I've only recently been introduced to the concept of crip time to describe the ways people with disabilities experience time and the world. Anne McDonald says:

I live life in slow motion. The world I live in is one where my thoughts are as quick as anyone's, my movements are weak and erratic, and my talk is slower than a snail in quicksand. I have cerebral palsy, I can't walk or talk, I use an alphabet board, and I communicate at the rate of 450 words an hour compared to your 150 words in a minute - twenty times as slow. A slow world would be my heaven. I am forced to live in your world, a fast hard one. If slow rays flew from me I would be able to live in this world. I need to speed up, or you need to slow down.

More recently, Ellen Samuels' (2017) piece "Six Ways of Looking at Crip Time" looks at other descriptions of crip time, including crip time as 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." She also discusses crip time as grief time, a never-ending process of grieving each new symptom and mourning lost potential.

In reading both these pieces, I had moments of instant recognition and a desire to think more about how my experiences with time are different as a care partner. As a care partner, I feel simultaneously part of the disability community and an outsider. At times, I am wholly aware of my abled otherness. I don't live fully within crip time. Yet, I no longer live in abled time, either. I live in care time, located betwixt and between.

I want to be very clear: in this piece, I do not speak for Gary. His experiences with disability and with time are his own, and he has not chosen to share them here, though he supports my authorship of this piece and its content. I also do not wish my voice to speak over any others in the disability community. My goal in writing this piece is to explain how being a care partner has changed my conception of time, because I believe these changes can bring clarity to our understandings of both crip time and abled time. Care partners straddle both worlds, as they can be able-bodied, yet they are part of the disability community. My theorizing of care time is meant to help those of us in the disability community—both people with disabilities and care partners—understand one another and act in solidarity.

Living in care time means I move between the worlds of crip time and abled time. When I'm at work, my world is linear, goal-focused, and easily delineated. I'm expected to be at specific places at precise times with organized tasks and thought patterns. I stand in the abled time zone where we craft strategic plans, syllabi, and assessment goals as if it's possible to be that prescriptive. No one really knows what the future holds, but in abled time, we pretend we do. And yet, I am highly aware that, for me, this abled time zone is precarious and may transform into crip time at any moment. I may need to leave work. I may need to take a doctor's phone call. I may lose my professional focus because of an upswell in care partnering. Care time means living with this constant uncertainty and becoming adept at "code-switching" between the time zones, the crip and the abled.

My movement through abled society has become a half-step off. I recognize continual moments of ableism around me and I also notice others who live in care time and crip time. I see my kin. I recognize them. Sometimes I am incredibly jealous of those who seem to move through life with the fluid grace of the fortunate. Walking through a bookstore the other day, I felt a sudden flash of hatred for everyone I saw, everyone who seemed untouched by grief or exhaustion. When someone complains about a small thing—perhaps their husband doesn't unload the dishwasher—sometimes I fight my urge to scream in their face. I remind myself: this is not the Olympics. There is not just one gold medal winner. I don't know their stories.

Care time means carefully calculating my hours of sick time at work. Even with FMLA, sick time and vacation time only stretch so far. Gary is no longer able to work and many days he does not feel safe driving a car. Over the past two years, we've had times of heightened medical needs—not just for Gary, but also for one of our children—and multiple, weekly doctor's appointments. A litany of stressful questions runs through my head: How many appointments do we need to go to this week? If I work through lunch, how many hours will I need to take off? Can I make that appointment first thing in the morning or at the day's end, so I can shave 30 minutes off the sick time I need to record? Can I bump that appointment to next week, because we've been to two doctors already and I have work deadlines? This constant calculating adds to the stress of care time, even though I'm one of the lucky ones. I work at a job where I do have a lot of flexibility and I can adjust my schedule. I work at a job where I get sick time—even family sick time—and where they've given me no grief or trouble about my FMLA.

Gary was diagnosed about seven years ago at the age of 30. When I talk about this for the first time with people, I always add, "Just like Michael J. Fox, but without the millions of dollars." We laugh and it's meant to be funny, but it's a brand of gallows humor, because I'm also deadly serious. If we had those millions of dollars, maybe I wouldn't worry about the tension between work and care. Maybe we could afford world class treatments, in-home physical therapy, a driver to take Gary to doctor's appointments, a housekeeper, a lawn service. Things that would help him feel as well as possible for as long as possible. Things that would help me, too, and remove the need to carefully count sick hours. I count sick hours like Gary counts his spoons (Miserandino).

I have tremendous privilege as a highly-educated middle-class white cis-woman with a fairly flexible job. If I struggle to balance work and medical needs, how do people in low wage, hourly jobs possibly cope? How is life in care time affected by socioeconomic class, education, and race? Yet at the same time, I think some aspects of care time do not vary with financial privilege. In particular, living in care time requires a willingness to drop out of abled time at any moment. That uncertainty is ever-present, regardless of identity factors.

Care time means I spend hours advocating for Gary's health. He was in the hospital last summer for an unrelated accident and surgery. We checked into the ER around 8 pm and he wasn't released until 2 pm the next day. Even with my constant reminders to the nursing team, the doctors didn't authorize and dispense his Parkinson's medications until noon on day two. Luckily, I'd brought all our meds from home and continued to make sure he took meds without their approval; otherwise, he would have been completely nonfunctional. Our medical systems do not work adequately without pervasive, persistent advocacy for patients. I've spent hours filling out paperwork, tracking medications, talking to doctors about new symptoms, and researching medical articles and studies, hoping for new information. Gary advocates for himself, too, but he has advanced Parkinson's Disease. We've have moments when he's not cognitively able to ask the right questions, remember symptoms, or talk to the doctors. Again, I recognize how my privilege benefits me during these medical interactions and I wonder how my experiences might change if I had a different intersectional identity.

Care time, like crip time, means every plan I make has an unspoken asterisk after it, because every plan is subject to cancellation. Care time means unpredictability, even when I'm immersed in abled time that demands authority. I've cancelled travel to three conferences in the last three years, because Gary had periods of extremely severe symptoms. We've both changed plans with friends and family more times than we could count.

Gary and I have three children, a tween and two young teens. We work to keep things as predictable and reliable as possible for them, even while we all live with the ever-changing demands of Parkinson's. I feel this struggle for balance acutely. At the moments when Gary feels worst, he's also least able to navigate other people's needs—not because he doesn't want to, but because his energy must be focused on basic tasks and managing his own pain. I spring into care partner overdrive. During times he feels better, our balance shifts again. We never really know which days will be good and which will be bad, so this dynamic continually changes without seeming rhyme or reason. All five of us, including the kids, shift our behaviors accordingly. Gary and I are open and honest with the kids about his symptoms and disease, but we stick to the realm of the factual and avoid speculation about the future. We don't want to burden them with all the what-ifs. I know being the child of a parent with Parkinson's can sometimes be really hard. Being the child of a care partner can also be hard. When my anxiety about Gary's health rises, my kids act as barometers and instantly reflect my stress, each in their own way. As a spouse and a parent, my worst times occur when I can't figure out how to meet Gary's needs and the kids' needs at the same time—not to mention my own needs. The kids and I don't live in crip time, but we visit there often.

Care time means no time. I work a full-time job in academic administration and I'm also an author of speculative fiction and middle-grade nonfiction. On good days, Gary engages in his own creative work, writing and designing board games. Our three children need time and attention and rides to activities. We have a house that does sometimes need to be cleaned. We have meals to make and dishes to do. There's never enough time. Gary struggles with guilt that he can't do more physical labor around the house. I struggle with trying to do too much. This is where some of the millions of dollars would come in handy, and yet I recognize we have so much more than many.

Care time means I ricochet between feeling the typical stressors of middle-age and feeling the pressures most people feel in their elderhood. At the times I'm most fully immersed in crip time, I'm also most aware of my abled otherness and my liminal position. When Gary's mobility is very compromised, sometimes his fingers can't handle buttons and I help undress him. Sometimes he has a bad fall and I help him stand and try to get him to a chair. Sometimes he needs help to get out of a chair. Sometimes he talks quietly and mumbles, so I interpret for him. Sometimes what he says doesn't make sense, but I can almost always make some sense of it. Sometimes he can't remember things. Sometimes he can't remember a lot of things. Sometimes Parkinson's feels like a cruel time machine, where these unwanted issues of old age are thrust upon both of us in our prime. As someone who exists in care time, I step into the outskirts of crip time with Gary, but I still cannot imagine his own lived experience at these times. I cannot speak for him. I can witness, I can support, I can advocate. I can love.

Care time means I fear time might be running out. What's Gary's prognosis? What does this new symptom mean? How long will we have together? When Gary was first diagnosed, we heard a lot of "Young Onset progresses more slowly," "Gary will probably be able to work another ten years," "There's lots of research coming down the pipeline and he's young enough to benefit from all of it." Four years later, he went on disability. His disease has progressed rapidly. He has advanced Parkinson's at the age of 37. His "brittle" brain chemistry means he's experienced horrible drug side effects from some things they've tried—we're talking really horrible, like drug-induced psychosis including hallucinations and complete disorientation in time/space. He's experienced periods of deep depression and apathy. He's had moments where he can't leave the house due to anxiety. He has cognitive changes with memory and executive functioning. If things are progressing this quickly, what's next? Where will we be in five years? Hell, in one year?

And yet, in the midst of this anxiety about the future, care time means focusing on the now. Gary and I agree on the need to endure the bad moments and seize the good. Those of us who move in crip time and care time know the world can change with one sentence from the doctor's mouth. There are days my anxiety is overwhelming, but I've also learned how to let go of the illusion of control. I've experienced freedom in releasing worries about the future. At the same time, though, focusing on the now sometimes feels like pressure: How can I waste one precious moment when he's feeling well, given my knowledge that tomorrow might be an awful day? But how can I stand the pressure of making the good times so good without allowing myself time to grieve or just be a human in a crappy mood? The stress of those questions is ever-present in care time.

Care time means I need to spend time taking care of myself. I struggle to get the balance right. I know this is a marathon and not a sprint, so I need to do things that help me feel better, that give me support. Things I want to do, things I love. Yet I see the needs of Gary and the kids better than my own. Also? I'm frankly able to survive and stay healthy with fewer of my needs met, so there are many times my needs should be the ones pushed to the back burner. When people continually tell me to focus on myself, they mean well, but the lived reality is that my needs can't come first. That's not what being a parent means. That's not what living in care time means. I do as much self-care as I can. I schedule massages, I go to yoga, and I play board games with family and friends. I read and I write every day. I try not to let the ebb and flow of Gary's symptoms dictate my entire mood. It's hard. I'm in therapy. I'm on my own antidepressants. I can personally vouch for truth in the research that shows care partners experience high rates of depression and anxiety, feelings of isolation and hopelessness—perhaps this is one way my life in care time moves into the crip time zone, as I experience some level of my own disability. We're partners and natural allies, those of us who live in crip time and care time. We need to understand each other and appreciate our lived realities so our community grows stronger.

I wouldn't go back in time and make other choices. No matter how difficult some days may be, I choose to live in care time. That's one huge way in which care time differs from crip time. Care time is an active choice. I want neither pity nor admiration for my choice—both of those responses make me angry, frankly, because I feel lucky to share this path with Gary. He's the best partner I can imagine having. I realize we stumble through darkness, trudging in muddy puddles and across jagged rocks. But the moments of sunlight, the bright unexpected flower by the side of the path? Those seem brighter. To love in the midst of hardship is a gift. Our kids learn empathy and compassion, understanding and flexibility. They learn love isn't about the perfect. Love is an active, daily choice.

I choose love. I choose to live in care time.

I hope adding the concept of care time to crip time can help the abled community understand the disability community. And I hope these words speak to other care partners so we can have more dialogue about our changing relationships to time and community.

Works Cited

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Copyright (c) 2018 Sarah E. Stevens

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