When Breath Isn't Enough by Amy Kenny

Essays for a Guaranteed Income

This week, I am publishing a series of essays on Guaranteed Income and the ways it would change five people’s lives. Today, an essay from Amy Kenny, edited by Meg Pillow.

Amy Kenny is a disabled scholar and a Shakespeare Lecturer who hates Hamlet. Kenny serves on the Mayor’s Diversity, Equity, and Inclusion Taskforce in California, coordinates support for people experiencing homelessness in her neighborhood, and is currently co-launching Jubilee Homes OC, a permeant supportive housing initiative in her local community. Her forthcoming book, My Body is Not a Prayer Request: Disability Justice in the Church debuts with Brazos in summer 2022.

“Will you come hold my hand while I die?” said the email from Sharon, as if she was inviting me to dinner and not her death. Outside, it was a warm afternoon in May, but inside, my chest froze so tight I had to remind myself to breathe. 

When I first met Sharon at the park on a chilly December afternoon three years earlier, she was sifting through a box of bras that someone donated for folks experiencing homelessness. Violet lace, black t-shirt, and padded scarlet options that made her raise her eyebrows as she lifted each one out of the box. 

“Oooh, too fancy!” she would say to anyone who would listen. Who has this many extra bras?  I wondered as we made self-conscious small talk over intimates.  Each bra she drew from the box made the pretense of politeness that governs conversations with people you just met dwindle.  By the time we were to the bottom of the box of bras, we were fast friends, two spoonies who laughed instead of languished.  

Sharon and I initially bonded over our shared medical trauma, a common pastime among chronically ill and disabled folks.  We both knew what it was like for doctors to dismiss you, for your pain to not be real to the white coats, so dying in a hospital girdled by traces of trauma would not offer a peaceful transition.  Sharon wanted to die surrounded by people who knew her as more than a medical case file and in the comfort of her own home.  A home she had lived in for less than a year with mismatched, donated furniture and too many traces of the tastes of previous tenants.  A home she only qualified for because she was less than 6 months away from death.  It turns out that for this pediatric nurse who called her Nissan Maxima home after medical bankruptcy came knocking, lung cancer was the only key to unlocking housing.  

Sharon’s “doesn’t make sense, but just go with it” vibe became the hallmark of our time with our friends who lived at the park. There’s that one time some random woman at the laundromat donated $10 after noticing we were there with unhoused folks the first Sunday of every month.  You would have thought it had Benjamin’s face on it, the delight it brought our friends. 

“Wow people just give you folks money,” one of them teased us for weeks to come. There’s that other time we pushed a truck—yes, an F150—for half a mile so one of our friends wouldn’t get towed again since he couldn’t afford a $60 parking ticket. Every unexpected expense is an emergency when you don’t have the luxury of not sweating the small stuff.  Or that other time we met one of our friends in an abandoned parking lot to give them gas so they could work the next morning at the warehouse, payday still another week away, but bills looming. Life among our friends experiencing homelessness is a string of wild and weighty stories that we just show up for, even when it doesn’t fully make sense.  

So Sharon’s email asking me to hold her hand while she dies wasn’t exactly unexpected— I had come to expect the unexpected in my years hanging out at the park—but it still wrung my lungs out like a sponge. Breathe, I told myself, reading the details of her date with death, aware of the irony of my lungs tightening up at this request from my friend with lung cancer. I emailed back and said I would hold her hand, but in the end, it wouldn’t matter. Death killed her plans. 

Less than three weeks later, she was rushed to the hospital with difficulty breathing. As much as they rush someone who is terminal, anyway. The hospice nurse called me from the medical transport, advising me to “make arrangements.” It was near the beginning of the COVID closures when hospitals were on lockdown. The beds were full, but the hallways were empty. Sharon was heavily sedated, but I was the one who felt like I was wading through heavy water.  

She didn’t say anything, not in words anyway. But her eyes told me she heard my voice, and her knowing smirk reassured me that she was still in there somewhere behind the machine helping her breathe. I held my phone to her ear for her brother to say goodbye. Me, the secretary to his grief.  Hovering next to death, I felt the gravity of knowing this would be the last time I would see her. I wanted to make sure I said all the right things that she needed to hear on her final journey.  

I told Sharon how much she was loved. I told her how we’d take care of her wishes, right down to the detailed list of who got her beat up recliner (Ava) and the janky space heater she overused (Uzi).  I didn’t know what would happen after her death, but I knew Sharon. I knew how practical and resourceful she was, how she’d saved up to die so her postmortem wishes weren’t a burden to anyone, most of all me. I knew that she wanted her life to be useful to people above all else.  And so I told her that we would take care of it all, and that her life would be useful, since that’s what I knew she’d need to hear. At the time I thought I was saying it for her.  I now realize it was mainly for me.  She squeezed my hand. Belabored and trembling, as though the last ounces of life were transferred with that squeeze. Guess she got to hold my hand while dying after all.  It just wasn’t how she’d imagined. 

The next time I went to the hospital was to collect her belongings. Some personal papers, her worn out crocs, and a donated fuchsia T-shirt that still smelled like the green soap she got at the 99-cent store. That was all that was left of her life. That, and a long list of logistics to do after someone dies. She had $17 and a raggedy recliner to her name.  

Despite having little, Sharon left behind moments of humor and happiness. The biggest hit at the giveaway of her stuff would turn out to be a 12-pack of single-ply, a lottery ticket in those early days of COVID. I can still hear the excitement of Elena, one of our newly-housed veterans, like a kid on Christmas morning, who spoke in a pitch reserved for dogs and dolphins: “Look at this!” she squealed from the linoleum bathroom, the clank of her cane beating to the melody of her joy. “TP! 12 whole rolls!” Laughter erupted at the silliness of it all. How ecstatic we were to find something to wipe our butts with after our friend had just died. The pure joy that even toilet paper can bring when every expense is expensive. 

The cheapest cremation package was $720, including the death certificate and a fog grey plastic urn that the mortician stressed was temporary. “A steal,” he’d said when Sharon and I met there one clammy Tuesday afternoon at dusk. It costs a lot to live when you are poor, but it also costs a lot to die. 

It wasn’t until the Saturday after Sharon’s death when cleaning out her house that I found the envelope. It wasn’t with her old nurse’s badge, or by the photographs of her late mother, or even with the stack of pink bills on her foldaway table she got from Salvation Army. It was stuffed in the bottom of her underwear drawer, where no one else would think to look. But she knew I would find it; ours was a friendship forged over intimates, and not just the bras at the park. There is a unique bond that spoonies have that the rest of the world doesn’t fully understand. Nothing is off limits when you finally know someone who speaks the language of your disabled body.  

The envelope bulged with small bills she’d set aside from her SSI check each month. It wasn’t much, but she started saving what she could to pay for her final home even when she didn’t have one of her own.  

I sat down on the recliner marked for Ava (literally, Sharon stuck a post-it on it so no one would take it for themselves), and I counted out the cash. I let my mind wander back to the time I gave her a pixie cut right after she started chemo. She didn’t want the uncertainty of waiting for it to fall out in clumps, so we got out the scissors and some courage one Sunday afternoon.

 “Make me look like Jamie Lee Curtis,” she’d said, relishing the makeover moment. It wasn’t so much that she cared about how she looked or even that she wanted to be pampered; she just wanted to take charge of her own life. The haircut was a mechanism for feeling in control, a control that is lost when you are at the mercy of someone else’s donations to survive.  

That’s exactly what Sharon did with her expenses, skipping meals to make ends meet, sweating it out without air conditioning in the California summer so she could afford to be cremated.  Choosing between her funeral and food when ends couldn’t stretch far enough. She didn’t want to be a burden. She didn’t want to cost anyone, she told me one breezy afternoon at her favorite park, despite my assurances to the contrary. Sharon was thrifty and thoughtful to her final breath, but she shouldn’t have had to be.  

We had her service at that park; not the one where she used to live, but the one with the lake where the ducks paddle their worries away and steal bread from unsuspecting toddlers waddling too close to the water. We read her beloved Ralph Waldo Emerson poem while nibbling on her favorite heath cookies. She loved the birds, the grassy nook, the bold squirrels frolicking as they snatched scraps before scampering away. She would sit and watch them on days she felt hopeless, she told me once. It helped her feel like there was room to breathe.  

It has been over a year since we scattered Sharon in the water. Some days I am still haunted when I visit the park. I think of how she brought so much life into the world as a pediatric nurse, and later, at the park with our friends who are currently unhoused. I think about how she deserved better, how even a couple hundred extra bucks each month would have given her the freedom not to make dire decisions worthy of an apocalyptic novel (food or funeral). I think of how it would have allowed her to exhale after holding her breath for so long. I think about how many other Sharons there are who live in the park, and I feel hopeless.

And then I catch a glimpse of a duck, squawking and shuffling, and I remember how much Sharon liked it here. And just for a moment, I feel like I can breathe.