“And still she can offer only her body as proof:
The way it moves a little slower every day. And the cells, ticking away. A
crow pecking at a sweater. The last hour waiting patiently on a tray for her
somewhere in the future. The spoon slipping quietly into the beautiful soup.”
—Laura Kasischke, “Near Misses”
If I wanted to, I could call the Sioux Falls coroner’s office and ask why I never received the results of the toxicology screen performed on tissue samples taken from my father. It’s been six years, and I should have gotten them by now. This urge to know flares then remits, like my autoimmune disease. I’ll badly want to learn the truth about the end of his life, and soon after, I’ll feel it would be compassionless to dredge up his records. I’ll wonder what I could have done to keep him alive, arrive at nothing, stop wondering.
I do want to know whether my father, if he had lived, would have taken care of me when I got sick, even though I failed to take care of him. Like his addiction, my disease can’t be cured. In cases like these, the sufferer often hopes the parts of his or her body or brain that are malfunctioning will become invisible. Except everyone blamed my father for his addiction. Against his wishes they kept bringing it out into the sun like a cringing, light-sick creature. Me, too. Me, especially. Whereas the narrative surrounding systemic lupus, the diagnosis I received when I was twenty-four, is one of blamelessness. The slogan of the Lupus Foundation of America reads, Help Us Solve the Cruel Mystery. In its logo, the “P” in Lupus is a question mark—as in, LU?US. This makes it seem like I’m a victim of alien abduction rather than someone whose immune system destroys healthy tissues. The thing that is meant to take care of me is the thing that is trying to kill me.
Three months after my father died, my blood clotted for the first time.
My parents met at Brighton Hospital in 1982. My mother was twenty-five and my father thirty. Not the first time at rehab for either of them, nor the last.
Let’s say it was spring. Outside the windows of my mother’s room, the buds on the magnolia tree in the courtyard had burst open into waxy flowers, mouths agape. My mother, detoxing, called for help. The chemicals in her body had mixed chaotically, and her mind was frantic.
My father, walking down the hallway, was the only one who seemed to hear her cry out. He stopped, listened to the voice, the bright fluorescence of the hallway lights beaming down at him. Maybe he hesitated, or maybe he walked right in. He found my mother with her short blond hair (Dorothy Hamill hair) all sweaty and plastered to the pillow.
He asked what was wrong. She said the room was filling with Ping-Pong balls.
The room was empty, antiseptic, the shiny brown-white color of an old hospital. My father said, “Let me help you,” and he mimed shoveling the Ping-Pong balls from the room—into the hallway, out of the closed window.
Even if I shouldn’t, even if I know better, the thought of young people doing drugs seems beautiful to me. Even though my mother was sweaty and sick, in my mind she seems glamorous, and my father, who’d been in rehab longer and was doing better than my mother, seems heroic. They fell in love, and this makes me swell with hope, as though the rest of the story hasn’t already happened. I want to reach back in time and fiddle with the ticking clock on the wall above my mother’s bed, springing the coils loose so time will stop and they’ll stay there forever.
In August of 2010, my sister and I rowed far out on Lake Huron in a canoe with our father’s ashes in a poplar box in the bottom of the boat. Sandy water sloshed around our feet. We’d chosen the wrong type of container for scattering—this box, it turned out, was for display—so we sat in the rocking boat and removed the base of the box with a screwdriver, the big Michigan clouds bandaging the sky above us.
Scattering was what our dad wanted. The summer before, prophetic, he’d stood on the porch of our family’s summer cottage—the one that had belonged to his father and would soon belong in part to us—and said he wanted his ashes here. He gestured vaguely, his coffee mug in his other hand. That trip was the last time I would see him alive.
Emily and I lifted from the box the bag of fine gray ash and overturned it, not knowing what to say as we did, not knowing how to extend the moment into something special. We didn’t mean to be unfeeling. The water was choppy that day, and the waves threatened to dump all three of us into the lake. It was our last day in Michigan; we couldn’t put it off any longer. Soon my sister would go to Boston, and I would return to California, where I lived with my boyfriend and a roommate, and where none of my family was.
I didn’t touch his ashes. Should I have?
At the funeral home I hadn’t wanted to touch him either. My uncle had clasped his shoulder, and my sister had put her hand on his hand. It was just the three of us, there to claim him and fill out paperwork before they lit the furnace. Eventually, when they’d stepped back and it was just me standing next to him, I touched one finger to his arm. It’s not that I didn’t want to be near him. It’s that he’d been dead for days and I knew he would be cold and rigid. And he was.
On the way out of the viewing room, I caught sight of a linerless wastebasket. In the bottom was a small spray of crumpled tissues from a previous viewing of a different person. I wanted to scoop them up and press them all to my chest—the bandwidth of my self-control was a little too low—just to feel togetherness with the other people who were grieving that day. But that would have been a strange thing to do, and my uncle and sister had already reached the door, and the perfumed smell of the funeral parlor buzzed around my nose, and the hot blowing wind of the Sioux Falls summer waited to push us toward the hundreds of things that needed to be done. So I dropped my own tissue into the wastebasket and left.
They would get married, the two young people from rehab who would become my parents, though when Emily and I cleaned out our father’s apartment, we found a journal—a project from a later stint in rehab—in which he’d written that they probably wouldn’t have gotten married if not for the baby.
My sister and I looked at each other, mouths open. We did math in our heads. It wasn’t Emily, this baby he was talking about—the months didn’t align correctly. Our mom had had a miscarriage, we knew, but we couldn’t recall when.
Whatever the reason, they wed. They had two children. For many years they shared prosperity, if not happiness, but beneath the suburban calm was dependency on substance. Now I’m dependent, too. I take palmfuls of pharmaceuticals to keep the illness away. For a while I couldn’t swallow pills without thinking of my dad. Pills had been his thing.
The blood clots that knocked me off my feet three months after my dad died baffled my doctor, the fatherly director of the student health center at UC Davis, where I was in graduate school. Dr. Kendall* was short and round and kind, his hair was thinning, and he always seemed to be at the SHC no matter the time of day.
“You’re young for clots,” he said.
I’d driven a lot that summer, I explained. To Sioux Falls and back. To Portland and back. To Michigan and back. Dr. Kendall was skeptical but eventually accepted the road trips as reason enough; long hours in the car can make the blood pool and clot. I would have to take blood thinners for at least six months, he explained, to break up the clots that dotted the deep veins in my left leg.
“There’s one test here that was slightly elevated,” he said, scrolling through the pages of lab results on his computer. But his voice trailed off. It was a test that measures autoimmune activity linked to blood clots, but I was twenty-three and had never had any health problems, so we both let the information get absorbed into the walls.
I fidgeted on the exam table; paper crinkled beneath me. I’d spent the previous day in the ER; my leg had swollen to twice its size, and though I’d ignored it for a week, thinking I’d just pulled a muscle, I knew when it turned blue something had to be done. I was chastised by the ER doctors. If a clot in my leg had broken off and traveled to my lungs, I probably would have died.
For a year I would focus on therapy for my blood clots, as well as my weight. Student health centers are used to girls coming in who are too thin. I was five foot six and 110 pounds. My protein levels were very low. I would see a dietician. I’d get fixed up.
At the end of my visit with Dr. Kendall, a nurse came in to show me how to inject the blood thinners into my stomach. I stuck the needle in and froze, my thumb hovering over the plunger. What had I done to myself?
“Plunge,” she prompted. “Plunge, plunge, plunge, plunge.”
Growing up, I would find canisters of Vicodin and other pills hidden around the house. I remember turning them over in my hands, never opening them, and then I’d carefully return them to their places (garment bags in the closet, behind books on the shelves, far back in the cupboard under the sink) and not say anything to my mother because I worried constantly that my parents would divorce. If I was perspicacious about anything as a child, it was that my parents would end up apart.
Every so often my dad would disappear to rehab. Our mother would say he was out of town. Once he had a heart attack in Florida, where he’d gone on business, and so my mother disappeared, too, to be with him.
I remember once when he took my sister and me to the library. I think I was twelve or thirteen. My sister, fifteen, had her learner’s permit, and my father directed her to squeeze into a spot that looked too small for the car. She did. We entered the library just as the man we’d parked next to was exiting. He complained that he couldn’t open his door. Instead of moving the car, or ignoring him, my dad snapped: he began yelling and swearing, and my sister and I slunk away, trying to separate ourselves from the scene. With a little distance, I could see how my father looked: his thin hair was wild, his face ashen, but the worst thing was that he wore sweatpants and the drugs had made him a little incontinent, so that there was a small wet spot blooming on his leg that I hadn’t noticed before. The man looked him up and down with disgust. He crawled into his car from the passenger side and drove away.
I was the one who’d asked for the library, but now I didn’t want to go inside with him—I wanted to protect him from further stares and judgment. In a quick burst I said that I didn’t need the book I was looking for, that I’d forgotten that I was going to borrow it from a friend instead. We could just go home.
My father worked in advertising. When his company finally fired him—for being stoned, for showing up at noon and leaving at three, for having drugs delivered to the office—he couldn’t believe it. I remember his shock when he came home that night. He got another job quickly—he was well liked in the Detroit ad world, and he did great work when he was sober—but lost it just as quickly when he fell asleep in a meeting, drool trickling down his chin.
I write all this not to make him into the caricature of an addict, nor to focus on the embarrassment of addiction, but to find the reasons I grew to dislike him. I changed from the child who’d been protective of him and his secrets to the teenager who resented him. It dismayed me that he had no control of his body; at dinner the fork would miss his mouth. I blamed him for his problems. I thought it was his fault he couldn’t fix them. My mother was sober, after all, and hadn’t she been the one who was worse off when they met?
I responded to my father’s illness with meanness, and the memory of my meanness was what later made me think I deserved to be sick. When my body turned on itself, I became convinced it was something I needed to go through in order to be forgiven.
I can see now how it could work the other way, too: perhaps he didn’t protect me the way a father should. My immune system doesn’t, either. Maybe I’m trying to find connections between my father’s death and my illness where there are none.
I followed Dr. Kendall’s instructions. I told my family about the clots over the phone, tried to shrug them off as bad luck. I shared details selectively. I’d always been a responsible person, and my family believed me when I said I was recovering. I took the blood thinners; I gained a little weight. I was given attention from doctors and friends for being sick, and the attention was nice because I was lonely. I wanted to believe that people would still want to be around me.
They did—because even if I was miserable I was also cheerful. This was a tactic I used—as my parents had before me—to divert attention from my illness. The truth was I began to feel worse as the school year went on. I was tired and weak and anemic. But I made it a mission to have everyone think I was well, since even though I enjoyed the attention, I felt I wasn’t worthy of it.
I had chronic eye infections that year. Every few weeks, one or both of my eyes burned red, discharged pus, and stung for a few days. I went through a few courses of antibiotics, but eventually I just started hiding them. Wearing sunglasses whenever I could or simply keeping my head down. Now I know the eye infections weren’t really cases of conjunctivitis but rather the result of my immune system overreacting to normal skin bacteria. I felt ashamed to look in the mirror.
I was teaching a discussion section for a Shakespeare class and was anxious that my students—who were already skeptical of me—thought I was on drugs. I still had a limp from my blood clots (I’d done some damage to my leg by waiting so long to go to the hospital), and each class period saw me hobbling back and forth as I wrote on the chalkboard. Eyes red. Very thin. With clothes that didn’t fit anymore.
At home I would swing in the hammock my roommate and I had tied between two lemon trees, the bright yellow orbs sunning themselves above me. I talked to my father in an attempt to release my guilt, but he never answered, and the guilt grew.
A rainy spring saw a visit from my mother, who looked at me like she knew I wasn’t healthy. But I distracted her with activities: we drove to Point Reyes to the verdant cliffs and watched the sneaker waves engulf the shore. I made a show of eating. And maybe we were fooling each other: she has multiple sclerosis, which was beginning to stir after a long remission. I let her go back to Michigan alone, and she let me stay in California.
I graduated with a master’s degree. Dr. Kendall took me off blood thinners. I was cured, he said. I was briefly relieved to have the yoke of illness removed, but I didn’t actually feel any better; I felt unhealthy in a very fundamental way, a way I couldn’t describe.
I flew to Boston to visit my sister. To celebrate my graduation, we went to a rooftop restaurant in the North End with white tablecloths and candles and pepper grinders brought to our plates by smiling waiters. The reflections of city lights glimmered on the Boston Inner Harbor in the distance, like melted stars. I couldn’t eat the lobster ravioli in front of me though it looked like the most perfect meal I’d ever seen.
“I don’t know why I’m so full,” I said with a smile, but I’d never been hungry in the first place.
“It’s okay,” Emily said, though the restaurant plans had been special to her, and her eyes searched to find a clear indication of what was wrong with me.
The same would happen with the grilled cheese we made the next day, the Pad Thai we ordered for dinner. When I walked around the city, my joints ached and my energy fled from me after the first few steps. I couldn’t keep up with the healthy young woman I’d been the last time I’d seen my sister. That woman didn’t exist anymore.
On the plane ride home, I couldn’t breathe well. I sucked in oxygen but each breath seemed to escape my body somewhere between my mouth and my lungs. I didn’t say a thing to anyone; I pretended to sleep as the flight attendant stalked the aisles with the drink cart and the sun dipped below the plane outside the window. I didn’t know how anemic I was, though a few weeks later, in the hospital, my hematocrit (the percentage of a person’s blood comprised of red blood cells) would be measured at less than 20 percent. A healthy range for adult women is around 40 to 45 percent. The air in planes is thinner, and as it was I didn’t have enough red blood cells to carry oxygen to my organs; each breath felt as thin as tissue.
I sobbed when I got in the car outside baggage claim, where my boyfriend, Frank, was waiting to pick me up. “I thought I was going to die,” I said, but the next day I began to convince him I was all right. I lied to everyone because I’d alienated my father when he was sick, and I was afraid the same would happen to me. I lied because I worried that I deserved to be alienated but that everyone would treat me with kindness instead.
Frank had travel plans that summer; he worked in production and was booked on shoots in Los Angeles. I didn’t want to keep him from going.
When I was sixteen, my father was arrested for driving under the influence. The cop who arrested him was the same one who’d given me my driver’s test just a few weeks earlier. He remembered our name and address and asked my father how I was doing as he took him to the station. This deeply embarrassed my mother, who’d been in the car while I took the test.
My dad bailed himself out. I’m not sure where he went for the next few days, but I didn’t see him. My mother was so angry she threw away his bed (they’d slept separately for most of their marriage), and eventually he turned up, but by that point my mother was already filing for divorce. At the time, I thought they might not have divorced if not for the arrest, but I see now how he’d been backing her into a corner for years. Her sobriety and strength had kept the family together, but she couldn’t hold us up any longer.
He went to a fancy rehab in Minnesota, the one where movie stars go. His father paid for it. I sometimes try to remember what I envisioned, at sixteen, my future relationship with my father would look like. Perhaps I thought there would be no consequences if I amputated the idea of any kind of future at all. My father’s rehab counselor suggested that he ask for his family to write him letters. I didn’t hold back. I told him I never wanted to see him again. I probably said other things, too, but for my own sake I’ve forgotten them.
I imagine him reading my letter in rehab. Whenever I picture him at Hazelden, I see emptiness: no other addicts except for him, alone, wandering dark corridors with milky puddles of light spaced equally apart on the brown-flecked tile floors. I must’ve made him cry, an idea that’s hard to live with. He told my mother he burned my letter.
I would see him again, but not very many times. I wish I’d known, at sixteen, how to protect my future from my own verdicts.
He lived in Minneapolis for a while and then moved to Sioux Falls, where he would work in advertising until the recession started and he would again lose his job. I’d go to college, and slowly, a few years after my letter, we’d start to talk, but we didn’t talk much, and I’m not sure that we ever really got to know each other again. I don’t know if he ever stopped using. When we cleaned out his apartment, we found records of a car accident and another arrest, another short stint in jail.
My immune system was attacking my red blood cells, my joints, my heart, my lungs. My colon was inflamed. When my leg swelled again, I went to the ER, and the next day I showed up at the student health center, new hospital records in hand, and waited on the exam table for Dr. Kendall. I’d already graduated, but because my student health insurance extended through the summer, I was allowed to use the SHC still. I was without a diagnosis, without a job, and soon to be without health insurance.
This time Dr. Kendall referred me to a specialist. “I treat horses,” he said. “You’re a zebra with a few extra spots.”
“All right,” I said, though I was sad.
I spent a lot of time in bed. I returned to my blood thinners, plunged the heparin shots into my stomach, each syringe falling into my at-home sharps container with a satisfying clatter. I went to my appointment with the specialist at the UC Davis Medical Center.
On the sprawling campus, lacy bushes of lavender line the walkways. Meticulously kept lawns lead to the towering eight-hundred-bed hospital facility, with ambulatory care buildings at its feet like obedient children. I sat outside before my appointment. I watched the Medevac hover over the hospital, dipping toward the landing pad, blades spinning furiously.
Though I could make no sense of my own symptoms, Dr. Walsh had already come to a conclusion based on the tests he’d ordered. He explained that lupus was a disease I might have inherited, or it might have been triggered by environmental factors. He explained that no one really knows where lupus comes from. I remember him concluding this way: “You have a perfect storm of autoimmune factors. Your immune system has turned on itself and has decided to attack healthy tissue. Maybe these drugs will help, or maybe not. There are different ones to try. We’ll just have to see.”
My immune system had made a decision. It was as though my body had gone to court, with me as the defendant. I thought having an answer would be a relief, but the diagnosis didn’t do anything to dispel the belief that I wouldn’t be sick if my father hadn’t died.
He prescribed an anti-malarial drug, though I didn’t have malaria.
He prescribed an anti-rejection drug, though I hadn’t had an organ transplant.
He prescribed a chemotherapy drug, though I didn’t have cancer.
These drugs were meant to treat things I didn’t have, and yet by some alchemy, they were meant to treat me. He told me to keep taking blood thinners. Prednisone, the rescue steroid, would be waiting in the wings, but Dr. Walsh wanted to hold off as long as possible because he didn’t like giving it to young people. It would ruin my bones and make my face look fat. It could make me crazy. It could blind me. The list of the horrible things it could do to me went on and on. It would also, of course, save me from lupus, but at a price.
At home, with my new cocktail of drugs, my health deteriorated. I stayed sequestered away in my half of the tiny duplex where I lived, growing too sick to go anywhere. I told one friend the truth in an email, and I believe I chose this person precisely because I didn’t know him well, so the stakes were low. Now I feel guilty to have burdened him with that information, but at the time, his response matched my own lighthearted account of the “perfect storm” inside my body. “Hopefully,” he wrote, “it’s a tempest in a teapot.”
I weighed 110 pounds on the day I saw Dr. Walsh. I weighed myself three days later and found I’d dropped to 104 pounds. The chemotherapy drug had made me sick, but I still didn’t know where that much weight had gone; it had simply disappeared like fog burning off.
A fig tree bore fruit in the backyard and plump tufts of clover sprouted from the grass. I left the back window open so my cat could jump in and out, but I stayed inside, the front shades drawn, because I was embarrassed to be home all the time while the rest of the world worked and socialized. I tried to write but my hands were too swollen to type or clasp a pen.
A month before he died, my father had e-mailed me and said he was lonely, and I didn’t respond. Eventually, the week of his death, I left a message on his answering machine, but that was for my benefit; I wanted to ask him a question about a story I was writing. When I reached his apartment in Sioux Falls to clean up everything, the light was still blinking, the message having never been played. I listened to my own voice, which sounded fake to me, and then I deleted the message. I was very aware of how he’d died as I lay alone in my duplex, too tired to clean up, watching movies, not sleeping, my chest hurting, my breath short, my nightstand crowded with prescription bottles. I hadn’t told him I’d been unwell.
In the ambulance that took me to the UC Davis hospital, I wondered if my father would have come to visit me. He died, perhaps not knowing if I’d forgiven him. I was the sick one now, and I didn’t know if he’d forgiven me. If loneliness had been a factor in his death, and I’d been a factor in his loneliness, then the line connecting me to his dying was clear and damning.
Once again I’d waited too long to go to the hospital. My resting heart rate galloped along at 150 beats per minute, my heart trying too hard to pump what few red blood cells I had through my body. Fluid had gathered around my heart and lungs, my lymph nodes were inflamed, my heart was enlarged, and I had blood clots in my leg. My weight had gone down to one hundred pounds. One doctor complained that my abdominal scans were too hard to read because I had no intra-abdominal fat. The doctors looked at me as though I might have questions for them, but I couldn’t think of any.
I didn’t sleep much in the hospital. I watched the progress of the blood transfusion: someone else’s blood dripping from the bag and traveling into the soft crater of my inner elbow. What kindness, to donate blood. There was morphine in an IV bag, too. All I had to do was tell the nurse when I wanted more.
My cubicle in the ICU had a nice view, but they were building a parking structure right outside. In a month or so, there wouldn’t be any view at all. There wasn’t much to do—I was hooked up to too many machines to walk around—so instead I listened. A man in the cubicle next to me had tried to kill himself by swallowing half his medicine cabinet. He’d been sedated, but when the doctors tried to bring him out of sedation to save what was left of his brain, he panicked and bit clear through his breathing tube. My heart broke for him. His ex-wife came one day and explained to the nurses that she wasn’t going to tell her children he was dying. They weren’t speaking to him, anyway.
Then my mother appeared. She spun the curtain back, her face frantic, but when she saw me she looked relieved. I was awake, I was talking. I think she’d imagined the worst. Coma, breathing tubes. She sat down in the chair by my bed. Outside a crane lifted a beam, swung it one way and another, and then left it suspended in midair.
“Your father came to me in a dream,” she said. “He asked what I was doing in Michigan while our daughter was in the hospital.”
She blinked tears from her eyes as she spoke. Behind her, the curtain fluttered vaguely in the air conditioning. The nurse had given her a smock and a mask to wear, because they were concerned I’d contracted a methicillin-resistant bacteria. She wore the mask for a minute but then tore it off.
“When I woke up, I smelled smoke from his Marlboros,” she said. “That’s how I know it was real.”
The image of my father smoking in heaven, asking my mother to take care of me, gave me peace.
Dr. Walsh relented; the other drugs hadn’t worked, and so it was time to put me on Prednisone. The next day I felt better, and though the drug would eventually make me osteoporotic, which recently caused three compression fractures in my spine, it pulled me back from a place where my body was getting too sick to recover. I left the ICU. A few days later, Dr. Walsh came to see me in my new room, followed by a group of medical students. He saw that I was up and walking. He turned to his students and spread his arms like someone welcoming a miracle. “Prednisone,” he said, his voice full of worship.
The last time I saw my father, my car was packed with all my things. I’d spent time at the family cottage on the lake to fill the gap between the end of my lease in Michigan and the start of my lease in California. The day before, we’d picked sixteen pounds of blueberries. The berries had fallen from the bushes in bunches at the lightest touch, and before we knew it we had more than we could eat.
My dad followed me as I carried my cat to the car and wedged his carrier between boxes. My dad looked concerned and said, “Can you see out the windows?”
“Sure,” I said, distracted by my cat’s howling.
The sky above us was a strong, unperturbed blue. The sun-soaked water shivered. Later that night, traveling through Iowa, I would encounter the worst storm I’d ever driven in, one that would have me fearing for my life, but for now the weather was fit for a lighthearted goodbye. The trip had been very nice, even if we’d been tentative around each other at first.
“Well,” my dad said. “The verdict is in. I like Frank.”
I smiled. “I like Frank, too.”
I returned to the lake recently. I paddled out in the canoe and dipped my hand in the water. Disease has altered my understanding of myself. My disease is me but not me. It works to make my body unknowable to me. Sometimes I think of my father as an addict, and other times as someone who had addictions. Sometimes I think of myself as having a disease, and sometimes as someone in remission.
As the waves rolled beneath my boat, I considered how much illness overwhelms. If my father were alive, I wouldn’t want to spend all our time talking about my disease, just as he wouldn’t want to spend it all talking about his addiction. We’d exist separately from these things. We’d occupy ourselves with more forgiving subjects. Television. Books. Wedding planning. I’m getting married next year.
If he were alive I imagine we’d be ready to be happy with each other, which is a nice thought.
A water bird banked and plunged, emerged with an empty beak, tried again.
*Names of doctors have been changed.