How To Fall Down
On how illness can shape you but doesn’t have to define you
Time slows when the lights are fluorescent and the days are punctuated by the rounds of the medical staff.
I wake up before the sun. There’s only the nurse’s aide, smiling at me, talking about her night, all while I’m slack-jawed and amiably semi-conscious. She takes my blood pressure and sticks a thermometer in my mouth. The pulse ox is slipped onto one finger while blood is pushed from another calloused, unwilling, unwanting fingertip. I hear the different machines beeping at different times and it wakes me for good. Beep, beep. The vitals are taken. The numbers are jotted down onto a chart. It will eventually join a file thick with pages chronicling a history most medical personnel couldn’t imagine. I groan and roll over.
The nurse comes to administer pills and supplements for lupus and my genetic mutation and my missing thyroid. She helpfully injects me in the stomach with synthetic insulin, pinch-hitting for a pancreas that refuses to make its own anymore. I watch her change the IV drip, hang a bag of antibiotics on the pole. She waits until it drips into my veins to her satisfaction. I taste the saline flush in the back of my mouth. I don’t know the body enough to know how this works; I only know the taste is nice, perhaps queuing me up for a push of IV painkillers. This doesn’t come, though. I’m not in pain enough for that. I could push it and ask for some, and sometimes I do, but I don’t need their analgesic qualities. What I want is the drugs’ ability to crush time into a cube, something I can pocket and look at later — maybe weeks from now — when I’m home and finally awake.
I wait for breakfast. I wait for the nurse to correct my insulin dose. I doze off. I wake up to people touching my body. Half asleep, I give one word answers to medical questions that require paragraphs of explanation.
After lunch, I find out that had I not been bored and curious enough to come in, I might have died.
I keep thinking of Jim Henson and his pneumonia, how he thought it was a cold until it was not just a cold, how he went to the hospital for pneumonia but it was too late. Untreated, once it hits your blood, you die. That’s how pneumonia kills people. You drown in fluid and your body is poisoned by the infection and you die and there’s a memorial service where Kermit the Frog sings “The Rainbow Connection.”
That could have been me. Maybe minus the frog.
At dinner I push food around my plate and wait for the Xanax to put me to sleep. I obsess over why I’m here. I feel mostly fine but the blood cultures show I’m so sick I might have to be here for three weeks. I’m bored without the Fentanyl that clouds my days and turns my usual hospital time into a justified drug binge.
They discharge me after ten days. I don’t feel any better or worse, except I’m delirious with sleep deprivation. I arrive home on a Thursday and, bolstered by steroids and six-hour doses of IV antibiotics administered by my nurse mother, I don’t sleep. When I do doze off, it’s in short stints: ten minutes of release followed by fifteen straight hours of staring at my phone, unable to understand logic, unable to process the dozens of articles I scan. I’m on prednisone, so I’m angry and craving food every hour. My younger brother tells me that I tried to get in the car to go buy candy. I don’t remember this. I don’t remember fighting him for the keys.
One sleepless morning, I leave the house while my parents are asleep. It has snowed all night and I want to take some pictures for Instagram, to prove I’m still alive. I walk down the path, intending to make my way across the street to the lake, to catch the magic of light rising over snow.
Instead, I slip. My head smacks back against the pavement so hard that I finally understand what it means to see stars. I’m paralyzed and I worry it’s permanent. I do not scream. I lie there, the pain filling my head like boiling water trying to escape through my eyeballs. I debate calling my dad. But I think about how he’ll find me, his nearly 30-year-old daughter flat on the pavement at dawn, and I decide it’s too much for either of us to bear.
Six months earlier, in July, I lost my ability to walk. It began, appropriately, with hard falls.
First, I tripped on my way up the stairs and thought I was just being clumsy. Two hours later, I fell three steps when my knees suddenly gave out on me, mid-step. I weakened. I could walk from the car to the doctor’s office but I couldn’t walk from the waiting room to the exam room. At the neurologist’s office, I had to hold onto my mother. The doctor admitted me to the neurological floor of the hospital twelve hours later, thinking it was some sort of terrible, degenerative neurological disease.
I had recently survived a systemic crisis in the ICU in UCLA and now I was back home on the Jersey Shore, recovering, improving. I was supposed to concentrate on walking forward and eventually, back onto that plane to graduate school and a new city.
But instead, now I was meeting the neurologist in the ER for a spinal tap. I spent four days in inpatient care. I got all the drugs I wanted. When they scanned my spinal cord and brain, they didn’t find nothing, but it wasn’t anything conclusive.
At first, I was relieved. Then confused. But mostly I was stoned. So very stoned. I began to understand people who shoot up. The way the morphine floated through my veins, that first couple seconds of feeling — they were the greatest of my life. I felt the total absence of physical pain, something I rarely knew as a lupus sufferer with a wrecked body. I didn’t need half as much morphine as they gave me and still I asked for more.
And then they moved me to an inpatient rehab center. I was the youngest patient by decades; a distinction I’m used to. The IV meds stopped and the withdrawal started strong and fast. Headaches, listlessness, depression so acute I could barely swallow without first considering if maybe I should just die first.
I spent three hours a day in physical and occupational therapy, trying to relearn how to lift my hands over my head and how to use the toilet by myself — first, how to do it, and then how to impress the staff enough that they’d clear me medically to go to the bathroom by myself. Before that clearance, though, even peeing required getting the help of a nurse or an aide by pushing the call button. And I had to pee often. My 87-year-old roommate Margo generally didn’t appreciate it.
After a few days, I started sneaking to the bathroom — or as sneaky as one can be in a wheelchair. But even with the modified toilet and its extra arms and extensions, it was so, so hard. It felt like the most physically exhausting thing I’d ever done on my own. I wasn’t some couch potato. I played basketball. I ran competitively. (I’d even run so hard I’d thrown up.) Suddenly, using the toilet was a terrible new struggle.
The gym downstairs was depressing, full of resistance bands and two-pound dumbbells, but there my relative youth shined. My personality came back; I stopped sleeping through activities and social worker interviews and got to work recovering. I Instagrammed it and would think about the surreal juxtaposition of my friends’ pictures of trips to the Hamptons next to those of my summer spent at a rehab hospital on the Jersey Shore. It was hard to accept at the time.
But I was surviving. My pregnant sister brought my two-year-old niece Sadie to see me every few days. Sadie decorated my corner of the room with the stuff my sister let her pick out from the dollar store. A Hawaiian luau dancer hung above my bed and heart-stamped duct tape coated my computer and wheelchair.
I got back to feeling. Feeling in my extremities returned but also feelings in my brain. Patched up with pain pills and Xanax, it started to light up.
I set simple goals and I met them.
And then I tried to put on my shorts by myself and fell out of bed.
A report was written and a fall risk bracelet was slapped on my wrist. But when I walked around the gym, all the old people cheered. We — the therapists and I — decided to try the stairs. I fell. Another report was written. I hid my tears but my red face told the truth. My favorite physical therapist let me sit on the steps, like an inconsolable child, while I gathered all the literal and metaphorical strength in the world to get up only to sit back down again. We would not try again for a few days.
Ten days in, I got a guest pass to leave for a few hours to go home and see some family from out of state whom I only saw once a year. I had a travel wheelchair for the occasion.
That morning, I had an excellent session with Stacy, my favorite physical therapist. By that point, I’d made friends with all of the young staff but Stacy and I had an instant connection — and now I was harboring a bit of a crush on her. I showed off, faking a Rockette kick, making everyone laugh. I was feeling taller than I was, stronger than I was, so we decided to take a stroll using my walker. My mom and Stacy stood beside me, teasing me about the rats nest my curly hair had become and chatting about my planned release in a few days. In between them, I joked and walked like I hadn’t just worked my ass off to be doing this. But on our way to the elevator, I fell mid-sentence.
A few trainers ran out of the gym and into the hallway. I cried. I knew they would revoke my day pass to cover themselves in case I got hurt while off-campus. Falling is a big deal in the hospital, an instant liability for insurance purposes. Nurses, therapists, and aides are constantly reminded of how dangerous falls can be to those who are already weak. And here, in a rehab hospital full of decrepit bones and dentures, my falls were all the more humiliating. I’d been labeled a safety risk and had extra help but still, I knew Stacy would be forced to defend herself. But there was nothing anyone could have done. I was supposed to be better and leaving to see my godson on a day pass.
I was mostly limp as the trainers and aides, the ones who’d just been clapping my back and calling me Bergin, lifted me into my wheelchair and wheeled me upstairs to my room. I could barely look at them as I said thank you. My mom sat with me as the social workers and doctors came to my room and refused to sign off for the day pass I was promised, the pass I’d been working so hard for.
My mom begged me not to sign out of the hospital strongly AMA: against medical advice. But I was over it.
“Fuck this,” I told my social worker. “I’m leaving. I’ll get an Uber to pick me up to see my family. I can’t be here another minute.”
To her credit, my mom supported me. I was going to be discharged three days later anyway, Medicare having declared itself done with me and my costly hospitalizations.
My therapists came upstairs as they heard; one pleaded with me to stay, but Stacy just hugged me goodbye and told me to visit. I tried to make jokes but my voice was dead, tired, over it, the last straw drawn. This was not the triumphant exit I’d planned. This was not the goodbye I’d envisioned.
I let my parents help me into the car and I slipped away.
I spent all of August and September strengthening my muscles. I fell many more times. On driveways and in patches of gravel and once on the sand, alone, the beach chair banging against my chest as people turned to look at me. I got used to the patches of black and blue all over my body. My legs would give out with a precision that knocked me flat on my back. At the time, I’d compared it to being hit from behind the knees with a cane or slipping on black ice.
The ice I’m lying on now though is not black. It’s just slick and I’m so tired. I’ve been in bed for nearly six weeks barely sleeping.
The sense of paralysis fades and I struggle to sit up. I rub my head. The sky finally opens up in front of me, the sun like the yolk in the eggs my parents have been forcing me to eat. I stand up and cross the sidewalk with my hand out to steady me.
I mourn the last year of my life, nearly all of it consumed by illness.
My life was not fitting into the trajectory I had dreamed about. In fact, it felt more and more like it was flying further and further away from anything that made sense. Parts of me broke off, parts of me hardened.
But parts of me opened up too.
Two weeks after I got home from rehab, I came out to my parents. And as I grappled with this long hinted-at, long thought-about discovery, I got stronger. I flourished in work and a new relationship. I traveled to Iceland and England and Turkey. I felt good.
Still, it was all short-lived. It ended when I landed back in New York, fresh from eight days abroad. Exhausted, I was naturally open to two strains of bacteria that invaded my bloodstream. My temperature spiked and I was back in the hospital, leading down the path that ends with me struggling up the walkway to my parents’ house and back into bed.
I thought about the last year. I’d seen my first niece take her first breath; I walked through mosques in Istanbul three months after rehab. I had experience, and love, and heartbreak. It was painful and, yeah, it was beautiful.
No one noticed me slipping into the house at dawn. The room I thought was going to be temporary six months ago was lit with the colors of the day. I got underneath my flannel sheets. I was here, and for now, that was enough.
Kelly Bergin is based in Asbury Park, New Jersey.
