Get set for independence

Dear Debriefers, 

I sat in my wheelchair in the long, grey hallway of the rehabilitation hospital. Louis, another patient, rolled up to me. He was leaving the hospital today and placed a black stuffed cat in my lap. “It’s Mr. Lazypants Fluffybottoms The Second”.

I placed Mr. Lazypants in the bag behind my wheelchair. Like Louis, I too was supposed to leave the rehabilitation hospital soon. Unlike Louis, I had yet to achieve the goal scrawled on the whiteboard opposite my bed: Be able to stand.

Despite being a token of friendship, the name of Louis’s cat riddled me with self-blame. Lazy was the taboo of rehab, and the label that followed me every time I failed to achieve my therapy goals. It was their explanation of why I couldn’t do things.

Yet, hard work would hardly restore my body to health in the United States’ for-profit healthcare system. Success meant steady progress toward needing less help, maintaining a positive attitude, and dismissal of my body’s limitations.

Independence was the supposed goal, and the hospital would justify withdrawing their costly care by pretending I had achieved it. 

About this edition

Welcome to new subscribers! This is the first Debrief newsletter going out to more than 4,000 readers.

We can publish these original essays because of generous support from readers. With thanks to Cara, Eirin, Trinh and Tilting the Lens for new contributions.

Rachel Litchman is an artist and writer in Madison, Wisconsin, USA.

Writing on the Wall

I stared into the list of words scattered in bold white typeface across the blue walls of the therapy gym: positivity, ambition, independence, goals, ability.

It was my first week in rehab. Despite what the walls professed, I was weak as fuck, negative as hell, and unable to walk or stand without assistance. 

“Ready?” My therapist asked. She sat on a stool in front of me between a set of parallel bars.

“Ready,” I said. I took a deep breath.

I grabbed onto the bars and hoisted myself onto my feet. Standing, my heart rate picked up. My head throbbed. I felt dizzy and nauseous.

“Little deer legs,” my therapist remarked. My spastic leg muscles trembled. I fell back into my wheelchair.

“You can bounce back”

At twenty-five, I was the youngest patient in the rehabilitation hospital. While I struggled to stand, I watched older patients walk across the gym. I was confused that I could not do the same.

My care team echoed this sentiment, insisting that I had an advantage. “You’re young,” a nurse told me one night while I lied in bed. “You can bounce back.”  She alarmed my bed, so I could not leave it. “Not like those hundred-year-old patients who will never get better.” 

Her disdain for the sick and elderly was an attitude all too common in the American healthcare system. And she was wrong about me, too. For years, despite all my attempts at therapy, my health has only gotten worse.

Terms and Conditions

Progressive disability and a slow, stepwise loss of physical function has forced me into a constant state of loss and adaptation.

Disabled community and support circles have helped me to adapt. They taught me I should not feel shame in using mobility aids or needing help from others. Interdependence, they called it, a term I first learned from activist and writer, Mia Mingus.

Even so, I could not accept the terms of this hospital, which severely limited my autonomy. I depended on staff for basic necessities, like the right to go outside or go to the bathroom. In rehab, interdependence isn’t a negotiation, it’s an imposition. 

I was trapped in my bed or chair by a hospital ranking system. Tags, colored red, yellow, white, or green labeled how much supervision I required with personal care tasks and whether or not I could get out of bed without triggering alarms.

Even when I received a white tag and graduated from bed alarms, I still needed permission to roll to a fenced in courtyard. But hospital staff did not need permission to intrude on my boundaries. 

Forced intimacy

One day, I was changing into my daytime clothes and took off my shirt when a nursing assistant flung open the door.

“One moment.” I said hurriedly. I bent over to cover my bare chest. “I’m just trying to put on my clothes,” 

“Did you order almond milk?”

“Yes, but I’m putting on my clothes. One moment please.” The nursing assistant did not leave. She walked into my room and put the almond milk on my bedside table. 

“Ok,” she said, “Well I’ll just put it here.” 

My body felt electric with anxiety, shame, and panic. It is that violating, ants on my skin kind of feeling. Leave. Go away. 

This is something, too, I learned to name from Mia Mingus: forced intimacy, the expectation that disabled people strip down and accept vulnerability to survive. The assumption that if we need help then it does not require our consent.

Yet this nurse’s transgression into my room was hardly the worst offense. Nursing staff touched vulnerable parts of my body, and sometimes talked about them in painful ways. I endured over half a dozen straight catheterizations. Once I was left stranded on the commode for nearly an hour as I waited for help transferring back to bed.

In these moments, dependent and exposed, laden with shame, the only thing I wanted was independence. I imagined independence as building a wall around myself, a protective forcefield. If needing help meant being neglected, invaded, and hurt, then I never wanted to need help again.

“Sometimes you just have to ask”

I wanted to stand and walk so I could go home. But my apartment had twenty stairs. I couldn’t climb them in my current condition. Nor could I afford more accessible housing with my little income.

Additionally, the hospital, and my health insurance, mandated that I stay no longer than two weeks maximum. 

I worried that I would become homeless upon discharge. My physical therapist responded “But there’s the ADA [Americans with Disabilities Act]. Your landlord has to accommodate you.”

“No, he doesn’t,” I said.

My therapist wasn’t the only one who shared this naïve outlook. “Sometimes you just have to ask, and people will be willing to work around the system for you,” my rehab physician affirmed when he visited my room later that day.

I’ve worked for six years in various non-profits, four of those years with local and federal governments on homelessness and affordable housing. I know landlords and housing authorities do not care about polite asking or urgent need. Yet my expertise did not matter in the hospital, where I was first and foremost a patient, and stigma around disability and my young age rendered me inexperienced, untrustworthy.

I hated being gaslit. And I hated my clinicians’ insistence that desperation and a positive attitude would change rigid rules and housing regulations. Their unrealistic optimism echoed the ableist sentiment that disabled people can obtain special privileges—work around the system—merely because they are pitied.

My case manager entered my room later that afternoon with a smug look on her face. She handed me a piece of paper. “I found affordable housing for you that’s wheelchair accessible,” she said. 

I looked at the paper in shock. The vacancy list was dated October 2022. It was August 2024. A knot formed in my stomach. After she left the room, I burst into angry tears.

Mindfulness and gratitude

My clinicians sensed my negative resolve and banished me to a mindfulness, meditation, and gratitude group. These were a list of nouns, in the current context, more intolerable for me than standing up.

Our first step toward achieving them was an exercise called “penguins”, because of the way we flapped our arms. We sat in a circle: me, a man with a “Do Not Resuscitate” bracelet, and a woman who hadn’t been able to stop vomiting. We extended our arms toward the ceiling, and then down toward our wheels. 

A young child stared and pointed at us through the glass door.

“List one thing you are grateful for,” the therapist encouraged.

Irritated, I said, “At least I have the use of my arms.” It wasn’t that I couldn’t feel gratitude; it was their singular focus on it – and their subsequent minimization of my very real problems – that left a sour taste in my mouth.

When my clinicians insisted positive thinking and hard work meant I could achieve my goals — intrinsic qualities that should be under my control — it made me feel responsible for my failure.

And in this context, gratitude felt like a diversion tactic. I resented being sent to the group. I resented prescribed optimism over real problem-solving. Positivity, ambition, independence – these things, as disabled activist and ancestor Stella Young would say, weren’t going to turn my stairs into a ramp.

Glimmers of personhood

One evening, I snuck outside into the fenced-in courtyard. To my surprise, Louis and his caregiver came out to join me. We talked about what brought us to the hospital, how we wanted to get back to the activities we loved, and our concerns about nursing staff.

“My nurse today came in so frantically trying to give me all these laxatives – and I was just like – ok, I’m good, thanks, you can hold off,” I told Louis.

“Is she the one that came in like a dust cloud?” he asked.

“With the blonde hair that’s all messed up?”

“Yeah – always dropping things all over the place, looking agitated.”

“Oh my God yes we’re talking about the same one. I was so on edge every time she came into my room.” We laughed. I wondered if she was taking psychoactive drugs.

These were the times that I felt glimmers of personhood: with other patients, united by our shared sense of powerlessness, frustration, and astonishment over the changes in our bodies. Some of us were rebellious, maybe as a way to reclaim control and dignity.

Our relationships were brought about by extraordinary circumstances. Beyond our new level of disablement, I felt, perhaps judgmentally, that we shared little in common. I respected the others, yes, but also envied them.

“I was fixing the wood fence in my yard, when I tripped and busted my hip,” Louis told me. “But I swear, those doctors were waiting around for something like this to happen. Put me back together and probably went out for a beer afterward.”

“That’s hard,” I said. But I did not tell him it had been years since I’d been able to do any kind of manual labor. Or that my arrival in rehab hadn’t been because of an accident I could potentially recover from, but because I kept progressively losing pieces of myself faster than I could process. And now I wasn’t sure if I could get any of them back.

Deservingness for Care

Unlike Louis with his busted hip and many of the other patients in rehab with well-defined clinical problems, I was brought to the hospital by a collection of symptoms. I had a chronic illness but no diagnosis for my deteriorated condition.

Without an official diagnosis, I worried my clinicians saw me as a fraud and doubted my deservingness for treatment. My case manager validated my sense of invalidity. A week into my stay, she came into my room again.

“Your insurance won’t cover your stay in rehab,” she told me. “Everything is out of pocket.”

Further, she agreed with my insurance that I no longer needed to be there. I had proven that I could transfer, propel my wheelchair, and toilet on my own. My hard work had backfired.

“Do you have any questions?” she asked.

“What about my housing? I have stairs. I can’t walk.”

She deflected my concern. “I mean, you don’t have coverage here anymore. You can go home tomorrow.”

I clenched my jaw. I’d faced this callousness many times before—at the root of my value, my deservingness for care, my indispensability, the grace and kindness extended toward me—dollar signs, my ability to pay.

This kind of thinking came from the very people who had told me that if I asked nicely enough, other systems would take pity on me and provide what I needed. Oh, the irony.

I stared at my case manager silently until she left the room. “No more questions,” I said under my breath.

Dear disabled ancestors—Lois Curtis, Carrie Ann Lucas, Bill Peace, Judy Heumann—may you give me your blessings, your curses, your rage.  Their lives, and deaths (some at the hands of the same callous system) served as a reminder that I was not alone. 

Not only could the case manager have affirmed that I still deserved to receive care, but I found out later that the hospital had a financial assistance policy that could have entirely wiped my bills. When I emailed the assistance policy to my case manager after my hospital stay, she admitted I didn’t have to pay a cent.

Negative thinking

The day before discharge, we played team Jenga for my final group therapy session.

A new patient to the ward lamented the function she’d lost after an accident. She didn’t feel like she could find any positives in what had happened.

“We’re all kind of in a shitty situation,” I said, pulling out a block from my team’s unsteady tower. I was giving my fellow patients, including Louis, a masterclass on negative thinking.  

“It’s ok to be negative sometimes.” My affirmation triggered a stir of agreement among the group.

“We’ve all got one thing in common,” someone else said.

“We’re all due for our 2 pm pain meds.”

“We’re all stuck here.” The other patients nodded. For the first time I left group therapy feeling validated.

The real fraud

Because I still could not walk, my physical therapist had declared I would go home scooting on my ass up the stairs. She said it made her feel relieved after I’d proven, on a small flight of rehab steps, I could do it.

I did not like the plan. It was exhausting and strained my shoulders. I had no way to easily get back down the stairs to retrieve groceries, mail, or let people in to help me.

Despite how hard I’d tried, no amount of hard work had actually made standing or walking out of the hospital possible. The real fraud wasn’t me pretending to be ill, but the hospital pretending I was well enough to go home.

“Get set for independence” 

“I feel sick,” I said. The evening before I left the hospital, shivers, muscle aches, and shortness of breath wracked my weak body. In the morning, I begged for a COVID test. It came back positive.

“They’re still discharging me,” I texted my friends. Panic swelled in my chest.

Hours before discharge, the pharmacist visited my room and gave me a prescription for the anti-viral, Paxlovid. He overlooked its potentially fatal interaction with my heart medication.

My rehab doctor gave me a shirt and a certificate. Get Set for Independence, they read. The loudspeakers announced my departure: “Attention. Please join us in the lobby to bid farewell to our newest rehab grad from room one twenty-two.”

I rolled toward the front doors feeling feverish, fatigued, and more disabled than when I had arrived. I felt a confused, bitter, and lonely sense of fear and sadness. I did not know what lay ahead.

I struck the gong at the entryway signaling my independence. Around me, a crowd of medical providers burst into loud applause.

Still Rolling,

Rachel

Postscript: I didn’t know it then, but, too weak to drag myself up my flight of twenty stairs, I would spend the next three weeks homeless, bouncing between a friend’s apartment and a cheap hotel.

Outro

Further reading on the Debrief:

• Forgotten, Rachel's piece on being trapped in her apartment after rehab
• Fractured, fighting, fixed, Peter's experience of hospitals and rehab in the UK

More from Rachel: find Rachel's writing and illustrations on her website, support her work on Patreon or follow on instagram.

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Acknowledgements

Many thanks to Peter for willing to be vulnerable with me to help me dive deeper into my own rehab experiences, and for editing this piece. It is truly a privilege to work with you. 

Thank you to readers and organizations whose support of the Debrief makes this publication possible.

Thank you to my friend Bri who knew I was going to write or draw about this experience one day and – unprompted – toured the rehab facility to take pictures and supply me reference photos, which helped me with the illustration.

“Louis” is a pseudonym and a combination of two patients I met in rehab, with identifying details changed to protect confidentiality. Thank you to Louis and all the other patients I met in rehab for making my stay slightly more bearable.