Time slows considerably when the days are aimless and the lights fluorescent, the only activity punctuated by the rounds of the medical team. I wake up and the sun is not out, not yet; there is only the nurse’s aide, smiling at me, talking about her night, all while I am slack-jawed, barely conscious or amiable after only a couple hours of sleep. She takes my blood pressure and sticks a thermometer in my mouth. The pulse ox is slipped onto a finger while blood is pushed from another callous, unwilling, unwanting fingertip. The machines beep at different times, a cacophony of sound and stimulation that wakes me for good. Beep, beep. The vitals are taken, the numbers are jotted down.
The nurse comes to administer pills and insulin. To change the IV drip. To hang a bang of antibiotics on the pole and watch it drip, satisfyingly, into my veins. 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 satisfying, perhaps queuing me up for a push of IV painkillers. This does not come, though. I am not in pain enough for that; I could push it, ask, and sometimes I do, but I don’t need them. What I want is their ability to crush this time into a cube, something I could pocket and look at later, weeks later, when I was home and finally awake.
I wait for breakfast, I wait for the nurse to come correct my insulin dose, I doze off. I wake up to people touching my body; to me, half asleep, giving one word answers to medical questions that require paragraphs of explanations. This helps nobody. My infections are serious and deadly and it is only luck that has saved me. After lunch they tell me this. At dinner I push food around my plate and wait for the Xanax to put me to sleep.
After ten days I am released. I feel no different from when I was admitted except I am delirious with sleep deprivation, so actually, everything feels different. I arrive home on a Thursday and bolstered by steroids and the six-hour IV antibiotics, my sleep does not come. It arrives in short bursts; a ten minute silence is followed by fifteen straight hours of staring at my phone, not understanding logic, unable to process the dozens of articles I am reading. My younger brother tells me, days later, that I tried to drive off to get candy; I don’t remember this, or fighting him for the keys, or telling him I thought I was going to fall down the steps and die.
One sleepless morning, I leave the house while my parents sleep. I pull on snow pants and boots and the magic of light rising over snow crystallizes before me. Hello, earth. I walk down the path, intending to make my way across the street and to the lake that lies there but instead I slip. I fall, hard. My head smacks back against the pavement and I see constellations in my vision. FUCK. I do not scream or rise in anger. I lie there, the headache quickly filling my head, the pain like boiling hot water aching to escape through my eyeballs. I debate calling my dad. I understand he will find me out here, prone, his nearly 30 year old daughter flat on the pavement, and I decide the image of that might be too much for him to bear.
No, I realize. It’s too much for me to bear.
Six months prior, I lost my ability to walk. It had began with falling hard, like this. First up. Then down. I was weakened. I could walk. Then I could not. I held onto my mother and the wall at the neurologist’s office. He admitted me twelve hours later, thinking it was a degenerative neurological disease.
I had just survived a systemic crisis in the ICU in UCLA; now I was home, recovering, improving, across the country. I was supposed to be walking forward and then back, eventually, onto that plane, to graduate school and a new city.
Instead I spent four days inpatient. This time I got all the drugs I wanted. They scanned my spinal cord and brain and did not find nothing, but did not find enough to conclusively agree on one diagnosis. I was relieved, then confused, but mostly stoned. I was so stoned. I understood IV drug users. The way the morphine floated into my veins, the first couple seconds of feeling, were the greatest of my life. An absence of the physical pain usually delivered by lupus and a wrecked body. I didn’t need half as much as I got and yet I kept asking for more.
They moved me to an inpatient rehab center where nobody was dying, but nobody was young. I was the youngest patient by miles; a distinction I’m used to but thought I was running out of holding. On the inside, the IV pain meds stopped and so the withdrawal came in, strong and swift. The headaches, the lifelessness, the depression so acute I could barely swallow without first considering if hey, maybe I should die first.
On the inside, I spent three hours a day in therapy, trying to relearn how to lift my hands over my head. How to use the toilet by myself; first how to actually do it, and then how to gain enough points with the staff that I was cleared, medically, to take myself to the bathroom. This was the greatest injustice (besides the food). I had to pee, often, but this required the help of a nurse or an aide, and it required pushing the call button, which woke my 87 year old roommate, Margo, and generally annoyed everyone. It was so banal, the most banal of banalities, and yet it caused such a fuss. I couldn’t believe the melee, and it happened every time. After a few days, I started sneaking off, as surreptitiously as one can be in a wheelchair, to the bathroom. But even with the modified toilet, the extra arms and extensions, it was so, so hard. It felt like the most physically exhausting thing I’d ever done on my own, and I wasn’t a stranger to athleticism. I had run races and played long games of basketball. I’d thrown up from running. But this exhausted me like nothing else.
Downstairs, away from my bathroom, in the depressing gym full of resistance bands and 2 pound hand weights, my relative youth shone. My personality came back; I stopped sleeping through activities and social worker interviews and got to actual work recovering. I Instagrammed it and I thought I grasped the surreality of my friends’ trips to the Hamptons and my summer at the Jersey Shore inpatient rehab hospital. I didn’t, then. I was merely surviving, with my pregnant sister shipping my nearly 3 year old niece to come see me every few days. Sadie decorated my corner of the room with stuff my sister let her pick out from the dollar store. A Hawaiian luau dancer hung above my band and heart stamped duct tape coated my computer and wheelchair.
I got back to feeling; feeling in my extremities returned, feelings in my brain, patched over by pain pills and Xanax, lit up again. 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. A fall risk bracelet, slapped on my wrist. I walked around the gym a week in and all the old people cheered. The therapists became friends. We 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 to sit back down again. We would not try again for a few days.
One day, ten days in, I had a guest pass to leave for a few hours to go home and see family from out of state. Family I only saw once a year. It was arranged for me to do therapy in the morning with my mother, a nurse, there, and then drive home with her for a few hours. I had a travel wheelchair and help ready. That morning, I had an excellent session with the favorite physical therapist that I now had a schoolgirl crush on. I was showing off, making everyone laugh, feeling taller than I was, stronger than I was. The morning was just about finished when we decided to take a walk using my walker. My mom and my crushed-on PT stood beside me, chatting about my release in a few days time as I joked in the middle and strolled as if I hadn’t just worked my ass off to do so. We were headed for the elevator when I fell, mid-sentence, as quick as thunder.
A few trainers ran out of the gym and into the hallway. I could not stop crying. I knew they would revoke my day pass. I knew this would get Stacy in trouble and I’d already gotten everyone in trouble with all of my stupid falls. Stupid, stupid falls. I lay there limp as they guided me back into my wheelchair and back upstairs into my room. The social workers came. And the doctors who wouldn’t sign off on my leaving for one hour, two hours, three. I cursed and cried and raged. My mom begged me not to do the thing that I did which was to sign out of the inpatient hospital abruptly and strongly AMA: against medical advice.
To her credit, she supported me. I was to be discharged three days later anyway, Medicare having declared itself tired of me and my costly hospitalizations. They would not cover more inpatient care and so I had to leave after the weekend. What difference did it really make, I thought. 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 planned. This was not the goodbye I’d envisioned. With my Rocky moment dead and buried, I let my parents help me into the car and I slip away.
And now it was winter again. I had spent all of August and September strengthening my muscles. I fell, so many times. On driveways and in patches of gravel and on the sand, alone, beach chair banging against my chest as the others on the beach looked at me. I grew accustomed to the patches of my body turned black and blue. My legs gave out with force and precision, knocking 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 was laying on was not black. It was just slick and I was just tired. I’d been in bed for nearly six weeks now and nothing was as strong as it was. I had no idea if I was as bad as I had been right before I lost it all, and I was terrified it was going to happen again.
Haltingly, I sat up and rubbed my head. The sky finally broke open in front of me, like the yolk in the eggs my parents had been forcing me to eat. I wasn’t hungry or happy or sad. I just wanted to take a nice picture of the sunrise. I got to my feet and traversed the sidewalk with my hand out, as if to steady me.
I mourned the last year of my life, nearly all of it consumed to 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. Parts of me broke off, parts of me hardened, parts of me opened more to love and to who I was. Two weeks after I got home from rehab, I came out as bisexual to my parents. And as I grappled with this long-hinted at, long-thought about discovery, I strengthened. I flourished in work and a new relationship. And yet it was all short-lived, all terminal. It ended as I landed back in New York, fresh from 8 days abroad, exhausted, bone-tired, and invariably open to the two bacteria that invaded my bloodstream, that spiked the fevers, that caused the hospitalization, that led to the insomnia, that ended here with me, struggling to walk up the path, back into bed.
Had I really lost another year? Were these years that I kept referring to as lost really lost? No, I thought. They contained great beauty and triumph. 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 and literature. It was all so painful and beautiful.
I slipped into the house unnoticed at dawn. My room, thought to be temporary six months ago, lit with the colors of the day, now fully realized. I fell onto my old flannel sheets and finally fell asleep.