When I was four, I got a bad case of croup that worried my mother enough for her to call my father. In the immediate aftermath of the previous year’s gun incident (which is how I’ve thought of it since, as if it were something I’d watched on an episode of The Mod Squad), Mom had avoided Dad as much as possible, but in the intervening year, my parents had reached a détente.
Dad was sober the night I came down with the croup, and as he sat on my bed holding me in his arms while my mother called the doctor, he teased me about the bizarre cough—a cross between a dog’s bark and a horse’s neigh—that was unlike any sound that should be coming out of a little girl.
“Is that a hyena?” he teased, eyes wide with mock horror. I started to laugh, but that triggered another bout of coughing. He put his palm against my chest and soothed me. Something had clearly alarmed him—perhaps the lingering rattle in my chest—because he picked me up and carried me to the kitchen, where my mother stood talking on the phone.
I ended up staying in the hospital for four days, lying in a bed draped with an oxygen tent (which I thought was very cool). The experience couldn’t have been that bad—I wasn’t frightened and I felt taken care of—because the worst thing I remember was the cough medicine they forced me to take, a thick, corrosive-looking chartreuse syrup with a flavor so vile I can still taste it.
I had my first asthma attack a few months later.
The experience of waking up in the early-morning darkness struggling to breathe was both disorienting and frightening. At only five years old I didn’t know how to make sense of the unfamiliar sensation of not being able to breathe. When I had croup, the cough had woken me up—this was quieter and felt dangerous. The frightening unknown propelled me out of bed to my mother. Her room was adjacent to mine, and as I reached for the sleeve of her nightgown, I was wholly unaware of the implications of what I was setting in motion.
“Mom,” I said, my voice barely above a whisper. She was a heavy sleeper, probably because of the depression she’d been experiencing at least since Dad left. My words failed to wake her, so with great effort, I tugged on her sleeve again.
“Mom,” I repeated as she blinked her eyes open, “I can’t breathe.” I didn’t know what was supposed to happen next, so when she said, “OK, get in,” I did as I was told. I walked the long way around to the other side of her bed, slightly hunched over, as she reached across and drew down the comforter.
Her bed was high off the ground. By the time I’d climbed up next to her and pulled the comforter over my legs, she’d already turned on her side, her back to me. I don’t know if she was asleep, but her breathing was even, unlike mine.
The comforter pressed heavily against me as I struggled to sit upright, instinctively knowing that this would take some pressure off my lungs. I couldn’t sleep because the effort to breathe took all my focus. The entire universe collapsed down to the space between my breaths. The sum total of me became the struggle to breathe.
My mother’s room was much larger than mine and occupied the southeast corner of the apartment. The bed was set far back from the windows, so the view of South Jamaica was slightly truncated compared to mine, creating a dark, lonely space, which she’d partially filled with an armchair, a small round table her father had assembled out of three pieces of intersecting plywood, and a floor lamp that, on those rare occasions it was lit, gave off a melancholy glow. Between the distance from the windows and my line of sight, I couldn’t see the moon, which, on the nights it was visible, kept me company when I was in my own bed. It felt lonelier. I missed the light, but not being able to see the moon also meant I had no way to keep track of time.
The sun rose, the clock struck seven. My mother woke to find that I hadn’t moved and my breathing, ragged and shallow, had worsened, coming in protracted intervals. Every single muscle in my body was tensed with the effort of inhaling, my lips thin and blue from oxygen deprivation. She got dressed while I sat on the edge of the bed and waited, my fists pressed into the mattress to reduce the pressure of gravity.
Queens General Hospital was a five-minute drive north along 164th Street, but that was not our destination. Mom passed right by it and drove for another fifteen minutes until we got to Booth Memorial Hospital, the Salvation Army hospital where she volunteered for the Women’s Auxiliary and my grandfather was on the board. For years, I thought we had to go to Booth, not realizing that the emergency room at Queens was a perfectly good option—and it would have saved me the extra fifteen minutes on the edge of suffocation.
This visit to the hospital was different from the first one. I received a shot of epinephrine, and then another when the first failed to break through. And then another. When my condition failed to improve after an hour or two, the doctor ordered an IV with a fluid drip of prednisone. The needle, sliding into my small vein, hurt in a new way, but I barely noticed. My progress was so slow, the doctors decided I needed to be admitted.
They wheeled me to the children’s ward and put me in a room with four beds, two of which were already occupied. Dim lights at the head of each bed were lit, and the flare of the fluorescents flooded in from the hallway, along with the occasional screams of the other patients. One of my roommates was asleep, but the other kept up a steady moan, whether from pain or homesickness I didn’t know. A nurse came in every hour or so to take my vital signs, but I wouldn’t have been able to sleep anyway—I was exhausted but also shaky and wired; the epinephrine had speeded up my heart rate and saddled me with a massive headache. My heart pounded hard against my chest. Many hours passed before I felt any significant relief. In order to find out if my lungs were drawing enough oxygen as well as exhaling enough carbon dioxide, the doctor had to take arterial-blood-gas measurements from an artery in my wrist, introducing me to an entirely new class of pain.
After I got home, I had to continue taking oral steroids plus theophylline, a long-acting drug that helped reduce the tightness in my chest by relaxing the bronchial muscles. It also stripped all of the potassium out of my body. Finally back in my bed and able to sleep uninterrupted—without crying roommates or a nurse taking my temperature, pulse, and blood pressure seemingly every time I was about to nod off—I woke up in the middle of the night with charley horses so intense I thought my calves were going to explode. My doctors then prescribed a liquid potassium supplement that tasted so awful, nothing I mixed with it could mask the taste. The cramps almost seemed a reasonable alternative.
The next time I woke up with that awful weight on my chest, I went to my mother as quickly as possible. After tugging her awake, I whispered, “Mom, I think I need to go to the hospital.” All I needed to do was ask, I thought. But asking changed nothing.
“OK, get in,” she said, still half-asleep.
The sky too dark for hope, the sleepless wait commenced. I exhaled as slowly as I could—although it was less an exhalation than a dread-filled surrender. Because what would happen next? I was beginning to understand that there was no guarantee I would be able to refill my lungs. The hours of waiting became one long seamless struggle to engage in the function most basic to sustaining life while every other aspect of what it means to be human was fractured and then obliterated. This moment, in the interstice between exhaling and inhaling, stretched into an eternity that was a cold, black emptiness accompanied by the sound of life bleeding out of me.
The sun rose; the clock struck seven.
Next time, I tried another tack, a declarative statement with no qualifications: “Mom, I need to go to the hospital.”
“OK, get in.”
Five or six hours later, my muscles tight with the labor of breathing, lips blue from oxygen deprivation, the sun rose; the clock struck seven.
By the time I was six, I’d been to the hospital—and admitted—at least four or five times. Almost every experience I had during the first year or two after I started having asthma attacks introduced a new, unexpected, and unavoidable pain—sometimes specific and acute, sometimes more diffuse. Making it all the more difficult was the unfamiliar sensation of being pinned down. I had always moved so easily through the world, like liquid, unburdened.
Asthma almost always strikes at 1:00 or 2:00 A.M., when we’re supine and when, during sleep, our airways narrow, increasing airflow resistance. It also didn’t help that I was severely allergic to our cat, who often slept next to me. I’d learned through all those visits to the emergency room that serious asthma attacks, in the days before the rescue inhaler was invented, had to be treated immediately.
Sometimes it wouldn’t be until the evening of the second or third day that my breathing improved enough for me to feel less afraid of suffocating, and for that blood-gas needle to become the next thing I dreaded most. I usually got released from the hospital after four or five days, depending on how bad things had gotten—how close the call. By then my breathing was fine, but my body was battered. The intensity of the effort to breathe combined with the quantity and strength of the drugs exhausted me.
When the doctor discharged me, my lungs were clear, but I hadn’t slept or eaten properly in days and I wanted to go home right away. Instead, after picking me up from my room and packing up my stuff, Mom took me to another wing of the hospital, where the Women’s Auxiliary had its headquarters. She told me she needed to pick up some paperwork on the way to the car, but instead, she stopped in every office and at every desk to talk to whoever was there.
“Mary’s just getting out of the hospital again.”
“Oh, no. Linda!”
I stayed by her side, quiet, trying to stand upright, but leaning against the wall when there was one nearby. I didn’t want to be rude, but I also didn’t have the energy to engage. She got her attention, she got her sympathy. And that was the point.
I learned to adjust my expectations. I became expert at waiting, a study of patience in extremis. I waited past endurance; I waited long after agony set in. Maybe if it gets bad enough—if she sees how bad it is—she’ll take me to the hospital right away. When it got to the point that inhaling felt like trying to draw air through a narrow, partially obstructed straw, I swung my legs slowly over the edge of my bed. It took much longer to get to my mother’s room now. I shuffled my feet, hunched over like an old woman, stopping at intervals, my palms pressed against my thighs in an effort to relieve the tension on my upper back. When I reached her bedside, I didn’t have the ability to speak. I tapped her on the shoulder and waited for her to open her eyes. When she did, I stood there, bent over, my shoulders pulled forward, barely able to keep my head up, and waited. She took one look at me.
“OK, get in.”
The seed of the knowledge had been planted: the worst way to be alone is to be alone in the presence of the one person who is supposed to love you most, protect you most, but who decides instead to turn her back on you and fall asleep. I sat up against the pillows, every muscle tensed with effort. I could not move, but there was no stillness. Next to me, she slept, her breathing shallow, steady, and rhythmic. It was the loneliest sound.