My Body Was Failing. I Started to Prepare for Death.
Afflicted with Crohn’s disease, the author lay in a hospital bed while waiting for help that seemed further away every day.
In May 2015, I started to prepare for death. My life insurance to my niece, Zoe. My dog to Mom. My clothes to my big sister, Kaetlyn, for first dibs, then donated. My furniture and books to my boyfriend, Jimmy. Would it be uncouth to write my own obituary? I read about what would happen to my body if I died in the hospital: I’d be transferred to the morgue while my family decided what to do with my refrigerated corpse. Could my organs be donated, or were they too damaged from sickness and medication? Should I bequeath my pathetic body to science? I liked the idea of being buried in that body farm in Texas, where students could study my decomposition.
I’d been fighting an arduous Crohn’s disease flare up combined with a recurrent bacterial infection of Clostridium dificile, or C. diff, since February, and had been an in-patient at Brooklyn Methodist Hospital since March. Crohn’s, an incurable form of inflammatory bowel disease (IBD) that I was diagnosed with in 2012, tricks my immune system into thinking my digestive system is an invader and needs to be violently dispelled from my body. It causes, among other symptoms, inflammation and ulceration from mouth to anus, diarrhea, vomiting, bleeding, fissures, fistulas, intestinal blockages, perforations, scar tissue, malnutrition, anemia, and joint pain.
C. diff is a spore-forming bacteria that’s extremely contagious and hard to treat (dificile quite literally means difficult). Common in hospitals, nursing homes, and other health-care centers where antibiotic use is high and compromised immune systems are common, C. diff releases toxins that attack the lining of the large intestine. It causes aggressive, foul-smelling diarrhea, an increased white blood cell count, dehydration, fever, and abdominal bloating. If it isn’t treated properly, C. diff can kill you. It infects about 500,000 people every year in the United States and kills 30,000—a historically high number, thanks in part to increasing antibiotic resistance. In an IBD gut, riddled with inflammation, ulceration, and scar tissue (perfect places for the bacteria to hide and multiply), the chance of death increases dramatically.
As weeks at Methodist passed, I became too weak to walk. My nurses encouraged me to at least shuffle around the room, but I kept falling down. They wrote “FALL RISK” on my dry-erase board. The chance of blood clots goes up when you’re bedridden, so I got anticoagulant shots and was hooked up to a compression device that wrapped around my skinny legs, squeezing them over and over again like two giant blood pressure cuffs. Nutrition and fluids came intravenously. Potassium and other electrolytes burned like salt in a wound as they traveled up my forearms. Nurses put wide pads, identical to the ones you use to train a puppy, under my butt when I stopped being able to make it to the bathroom. Sometimes, I’d drift off and wake up in my own mess, quick to apologize to the nurses who cleaned me up. “Honey, it’s my job,” they’d say with a reassuring smile and a pat on the hand. On their next round, they’d bring me ginger candies and giant cups of fresh crushed ice, trying to make me feel better for being a twenty-six-year-old woman who shit the bed.
I’d had C. diff once before, during the spring of 2013. After failing round after round of antibiotics, doctors at Weill Cornell in Manhattan performed a fecal microbiota transplant (FMT), where the healthy stool from a donor (Zoe, nine years old at the time) was mixed with saline and transplanted via colonoscopy into my diseased large intestine. The flora from the healthy stool populated my gut with diverse bacteria, overtook the nasty C. diff bacteria, and rebalanced my microbiota. Forty-eight hours after the FMT, I felt markedly better and continued to improve over the coming months.
But things were different in 2015 than they were in 2013 when I had C. diff the first time. The FDA was regulating fecal transplants more carefully, and many doctors who’d performed them previously halted the procedure or stopped altogether. Under 2015’s FDA guidelines, most FMTs could be performed only in a clinical trial setting. My gastroenterologist called several doctors who all said the same thing: “We aren’t doing transplants right now.” No one wanted to step on the FDA’s toes. Professionally, I understood the fear of going up against a powerful government agency. But I was dying. I was twenty-six years old and I was dying, and no one wanted to ruffle feathers to help me not die. That was the deepest loneliness I’ve ever known.
By May, I weighed 90 pounds. My skin appeared alien gray and hung from my bones like a saggy, deflated balloon. I relied on someone else for everything: sitting up, putting rubber-bottomed socks on, going to the bathroom, washing up in my room’s tiny shower. My body didn’t feel like my own. IVs got harder and harder to insert due to all the blown veins. Bruises covered my arms in spindly purple and green fireworks next to sore, scabby rashes from all the weeks of medical tape. My veins became so difficult to find that they had to use a machine called a Vein Viewer on my arms, legs, and neck to locate deeper locations less likely to blow up. I left IVs in longer than I should have for fear of not finding another useable spot. My blood pressure was 70/50 on a good day, and some days it wouldn’t register at all. The hospital’s endocrinologist suspected my adrenal glands were failing; they weren’t, I was just sick in lots of other ways. “Were there times you thought I might die?” I asked Mom. “Absolutely,” she said.
I knew that I couldn’t stay hooked up to IV antibiotics forever but that stopping would free the infection to run rampant. Antibiotics were like a finger in the dam—they tamped things down but weren’t a long-term solution. Plus, the IBD flare, which carved my lower colon and rectum with ulceration, couldn’t be treated safely until the C. diff infection was gone—treatment for IBD required suppressing my immune system, the opposite of what I needed to fight C. diff. Getting better required a fecal transplant first and foremost, but I still couldn’t access one.
The only thing that kept me from leaping from a window was the fuzzy euphoria of IV painkillers. Dilaudid, or hydromorphone, is an opioid analgesic that’s used for severe pain, like chronic and cancer-related pain. It’s chemically similar to morphine but much stronger, earning it the nickname “hospital heroin.” During the first few weeks I was admitted, a nurse injected me with 3 milligrams of Dilaudid every four hours (a delivery called IV push); later, the pain management team switched to a pump for more even and controllable relief. Every thirty minutes I pressed a button to dispense the medication into my forearm. Click.
Upon injection, it created a heavy, exploding sensation from the center of my chest outward, like strong hands shoving me backward against the bed. Prickly warmth wove its way through my limbs and up my neck and scalp, followed by a sleepy brain fog that made everything pleasant and dreamlike. Though it didn’t always control the pain (gastrointestinal pain is notoriously difficult to manage), it made me care less about it. Time passed faster and my anxiety dissipated. I was floating somewhere outside the hospital room in a pink, opiate cloud, and that was juuuuuust fine. If I slipped into death, at least I wouldn’t mind.
Dilaudid has a long list of potential side effects, including sleep disturbances and hallucinations. Though the medication made me tired, I never really slept. Opiates disrupt the deeper levels of sleep, including REM, so I wasn’t getting any restorative rest. I was somewhere between awake and asleep for weeks at a time. I blame this for Dad, who’d been dead for almost seven years by then, showing up in my hospital room.
Dad died on December 9, 2008. He was fifty-six years old. The coroner thought he’d been dead a few days longer, but that’s the day the cops found him. He died on the toilet. For a long time, if I told people he was dead at all, I said he died on the bathroom floor. Like that was somehow more dignified. We cremated him. There was no memorial. The month after he died, I wrote this in my journal:
You died December 9th, 2008. Kaetlyn called the police after we couldn’t get a hold of you. I knew you were gone when she called me back and all she said was, “Are you home?” I knew then. I was on the sidewalk in the cold when she told me. Her phone rang and it said your name, but when she answered it was not you. It was the coroner.
You were gone.
The world changed in that moment.
The next day, Mom picked me up and took me home. The world looked different. It kept going on without me. And you.
Kaetlyn and I went to the funeral home where your body was. They told us cremation was a good idea, which means you looked awful. We had to tell them the obituary version of your life.
I think that is all I can handle for now.
You broke my heart.
I love you. Please come back to me.
In his apartment, there was a meditation mat on the floor and a wooden Buddha statue on the windowsill; an unbuckled wristwatch lay beside the mat. Harold Budd and Brian Eno’s The Pearl, the same album he played me as a colicky baby, was in the CD player beside his bed. Google searches on his computer included stuff like “LIVER FAILURE BLOATING,” “LIVER REGENERATION POSSIBLE,” and “WHAT HAPPENS TO BODY DURING CREMATION?” He didn’t want to die. In an email several months before his death, he wrote to me: “I will, in all likelihood, live to be 90. When I’m very old, I’d like you and your sister to put me in a rowboat at sunset and push me out to sea.”
Kaetlyn and I found other evidence that he’d been sick: used tissues strewn about, a heating pad on the sofa, vomit and feces dried to the carpet as though he couldn’t make it to the bathroom in time. No one tells you that when you’re poor, you have to clean it up yourself when someone dies. Even your own dad. Kaetlyn and I attempted the cleanup, but seeing Dad’s bodily fluids on the floor like that short-circuited our brains. We didn’t talk about it and we couldn’t fathom going back inside his apartment. Mom and our stepdad took over for us, bagging up Dad’s clothes and books. They hired some cheap cleaners to do the rest—vomit and blood are just that when you don’t know who they came from.
A month or so before his death, at Kaetlyn’s prompting upon seeing how yellow his skin and eyes had gotten, in addition to his shoddy memory and tendency to repeat things, Dad went to the hospital. He was admitted for liver failure. The doctors told him his liver was 90 percent shot and that he needed a transplant. There was no hope of getting one, though, as alcoholics aren’t high on the list. Without a job, Dad didn’t have health insurance, so he was afraid of the cost. Plus, he loathed doctors and hospitals. He checked out after a few days. (Sometime after he died, we were notified that the hospital had forgiven his bill. It was dated before his death.) “I almost bit the big one!” he told me on the phone on December 2, the last time I spoke to him. He was scared and swearing a life of sobriety. I sat in my living room on the north side of Chicago, eating ramen noodles, glad that he was out of the hospital but skeptical he’d stay sober. “Well, T.J., I’m rambling,” he said. “I’ll let you go. I love you.” From young childhood, anxiety told me that if I was afraid of it—if I turned fear over and over in my mind until I was sick with worry—that I’d be eventually ready for that thing, whatever it was. But I worried about Dad dying for years and I still wasn’t prepared to lose him.
When Dad died, I didn’t feel his presence or get any messages from beyond like I’d hoped for. But I did see him in a recurring dream: I was in a giant old house running down a staircase with an intricate wood banister. The wall next to the stairs was lined with windows, and I saw Dad’s gold Mazda Protégé pull up outside. I rushed to him, screaming, “Where have you been?!” But when I got close, I saw that his eyes—the irises, the whites, everything—were black. That’s when I’d wake up.
But in the hospital, high on Dilaudid, my mind had difficulty separating dream from reality. It was nighttime when Dad appeared in my room. The lights were off, though it wasn’t dark—the hallway fluorescents shone in constellations through the door, and I kept the TV on for light and comforting background noise. I was in a hazy half-sleep. Dad wore an off-white, short-sleeved shirt, with embroidered brown suns and tortoiseshell buttons. His baseball cap was faded gray with a colorful figure in the center. He stood to the left of my door, calmly, as though he’d always been there. I thought I was dreaming at first—and maybe I was—but my eyes were open. I sat up in bed to look at him. Dad stayed still, his mouth turning upward into a warm smile. His eyes were more blue and clear than they’d been in real life.
Neither of us said anything, but something was communicated: He knew I was very sick. I wasn’t going to die just yet, but if I did, it was nothing to be afraid of. He would be right here if anything happened. Then, I blinked, and he wasn’t there anymore. I was so sick, so exhausted, and on so much medication that I thought little of it (all I jotted in my hospital notebook was, “Saw Dad tonight”) until several months after I’d been discharged. Perhaps it was my brain conjuring a protective mechanism, or the months of Dilaudid and lack of sleep catching up to me. As a journalist it’s my job to be skeptical and find a reasonable explanation for phenomena. Maybe “ghosts” are whatever we need them to be, and I needed comfort. Maybe ghosts are just grief. Whatever it was, seeing Dad made me less afraid, both in the moment and now, as I face an uncertain future with a disease that can’t be cured.
I think of his image in that moment often, happy, in the sun-covered shirt. A version that didn’t get to exist on this plane. A best version of him.
“I’ll be right here.”
Excerpted from WHAT DOESN'T KILL YOU: A Life with Chronic Illness - Lessons from a Body in Revolt by Tessa Miller. Published by Henry Holt and Company. Copyright © 2021 by Tessa Delheimer-Miller
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