A memoir excerpt by Joan Marcus
When it’s 1991 and you walk into an emergency room in Tucson with a racing heart, everyone thinks you’re on coke. “We aren’t the police,” they say, hoping you’ll fess up. They believe they’re being wise and supportive, the nurse and the other nurse, and the cool young orderly with the silver ear cuff that they send in when the nurses can’t get me to admit anything. He pulls up a chair by my bed in triage and leans his forearms on his thighs to prove he’s my chum. “It’s okay,” he says, smiling his encouragement. “You can tell me anything. I’m not the police.”
Now the heart monitor reads 136, 148, 155, because he’s making things so much worse. “Jesus,” I think. “These people really have no idea what could be wrong with me!” Every time someone here mentions narcotics, my already clattering heart amps way up. Apparently there is no reasonable explanation for a young woman, slim and healthy-looking, to have a heart like mine.
It started this afternoon as I finished a plate of cheese and crackers. I’ve been eating a lot of that lately—tubs of port wine cheese and big blocks of store-brand cheddar—because my boyfriend is back east tending to his dying mother and I’m too lazy to cook for myself. I pushed the plate aside and went into my office looking for a file. That’s when I felt it: my heart chugging way too fast, for no reason at all. “I’m thinking maybe it’s the cheese,” I told the guy who took my call at the student health center.
“I’m sure it’s not the cheese,” he said, a little impatient. I didn’t think it was his job to make that assessment, but I didn’t say anything. My heart rocked in my throat, my temples, pounded against my fingers when I pressed them to my neck. “Do you want an appointment?” he asked.
“Forget it,” I said. “It’ll pass.” I hung up and went to sit on the couch.
By the time I changed my mind and asked my neighbor for a ride, the health center had closed. Now here I am at University Hospital, where the cool orderly gives me a good-natured shrug when I tell him I’ve had nothing stronger than mint tea today. He glances at the monitor, the climbing numbers. I suppose the fact that my heart accelerates whenever someone mentions drugs seems like proof that I’m keeping something from them. Well—there’s not much I can do about that. My heart is a willful little sprite, bouncing along pell-mell while I lie here perfectly still so the IV in the back of my hand won’t hurt. If I knew how to make my heart behave, I wouldn’t be here.
Soon a nurse draws blood to check my hormone levels. “Could be a thyroid tumor,” she says, which really gets my heart pumping, a rocket in my chest, slamming me.
“Will I get to see a cardiologist?” I manage.
“He’s doing his rounds right now,” she says. “Let’s see what the blood test reveals.”
The test comes back negative, thank God. Thank you thank you, I say in my head. For a while there I was pretty sure I had thyroid cancer because it was the only viable explanation anyone had given me, and also because that’s the kind of thing I’m convinced would happen to me in my mid-twenties, something bad and weird and out-of-the-blue. I already lost my mother four years ago to a muscle-wasting disease that left her paralyzed and drooling. Not being terminally ill myself feels like a damned miracle.
“You know,” the nurse says, “most insurance won’t pay for a drug screening.”
Anxiety has muddled me—it takes me a moment to realize that she’s still trying to pry a confession. All I can think is that no one here knows what’s wrong with me and on top of that I’m too poor to be sick. My heart slams in my neck, my arms, my whole body shakes.
“How much does it cost?” I ask.
A shrug. “Can’t say. Could be a hundred or more.”
“I can’t afford that! Look, I’ve told you the truth.”
She gives my leg a comforting pat. “Maybe insurance will pay after all.”
The next time I see her she’s all business, clearly worried I’ll resist her instructions. “We need a urine sample,” she says, her words clipped. She hands me the plastic cup and sends me into the bathroom with my saline IV trailing behind. It feels as though I don’t have a choice, that if I don’t let them do their expensive screening, they won’t give me any help at all. What I don’t realize yet is that there’s nothing they can do for me anyway. The cardiologist drifts by at five or six in the morning, hours after that drug test comes back clean. “Your blood pressure is fine no matter how high your heart goes,” he says. “I know the tachycardia feels strange, but it isn’t hurting you. You may as well go home.”
No one calls this a panic attack until I phone Roger back east to let him know what’s going on and he mentions it to his brother, who shrugs and says, “You left and she had a panic attack. I’m sure she’s fine.” When Roger tells me this, trying to reassure me I guess, I am beyond insulted. Why would I panic because my boyfriend left? We haven’t even been together two years—I spent most of my life getting by just fine without him. Anyway, he’s back soon enough, his mother fading but still alive, and the tachycardia doesn’t stop. It’s better now that I’ve left the ER, but rears up at odd moments—when I’m driving to school or fixing a can of soup. A doctor at student health puts me on beta blockers that make my skull feel like it’s packed with cotton. I ditch them and start looking for alternative cures—massage and chiropractic adjustments and dietary changes. Someone tells me that the tyramine in cheese can indeed speed up your pulse, so I lay off the cheddar. That seems to help, but then one night I’m in the theater watching Geena Davis and Susan Sarandon tear across the desert raising plumes of red dust, a dozen police cruisers in hot pursuit, and I’m speeding hard again, my heart a hammer that won’t ease off even after we’ve left the theater.
So it could be panic after all. Not because Roger left. Maybe because his mother is dying from a lump in her breast that she discovered while her husband was getting ready for knee surgery, so she ignored it until it was too late. I remember the first time I ever spoke with Roger, how he prepared his tequila shot, holding his lime with those long fingers, and told me about his mother’s cancer, and I thought, okay, here’s a guy who could understand me. Is it weird that his suffering made him that much more attractive? Now here I am going through that grief with him, hearing about how his mother’s bones are so frail she broke her rib just by rolling over in bed. This shouldn’t be about me—my partner needs me right now. But shit. It’s always about me.
Eventually the tachycardia resolves itself, with one exception. For years and years afterwards—ten years, twenty, going on twenty-five years now—any time I visit the doctor my heart rate notches up past 130. This happens even if I’m there for something minor like a prescription refill. It’s the antiseptic smell that does it, the lurid posters of mouth sores and skin malignancies. Or it isn’t. Maybe the details don’t matter. The waiting room can be crowded or empty, bright with plants and gossip mags or bare and low-lit with drab furniture. Either way I’m in all kinds of hell the second I walk through the door.
“What I want is for medical appointments to feel like running by the library,” I say. “Just one more chore I’m taking care of.” A counselor at County Mental Health is doing my intake, tapping notes on an old Dell PC and nodding agreeably. They handle a lot of involuntary cases here, people with criminal records compounding their addictions and vice versa. I imagine I’m one of her more pleasant cases today, a middle-aged woman who came here willingly and seems sincere about wanting help.
“That’s a great goal,” she assures me. A moment ago, she asked whether therapists’ offices gave me the same kind of anxiety. Every mental health provider wants to know that, and the answer is always no. I do have a bad habit of cutting my treatment short the second I start feeling better, but I can’t say therapy itself ever worries me. No one takes my blood or checks my body for lumps. What are they going to tell me about myself that I don’t already know?
Panic attacks feel god-awful, and sedatives don’t do much for me—the attacks are that bad—so I avoid the doctor as much as possible. I manage a yearly physical maybe once every four years, a mammogram about as often. If something really frightens me, like the age spot on my back that I thought was melanoma, I drag myself to the GP muttering please please the whole way. Otherwise I stay away. I haven’t seen an actual OBGYN since the day I gave birth to my youngest sixteen years ago.
Believe me—I know how bad this is. “I might have made a tactical error in not going to a physician for twenty years,” said Warren Zevon on the Late Show with David Letterman in 2002, shortly after his diagnosis of terminal pleural mesothelioma. “It was one of those phobias that really didn’t pay off.”
Sweet Warren, with his round glasses and acerbic wit, who released Life’ll Kill Ya two years before his diagnosis. As though writing about mortality were a reasonable stand-in for self-care.
I’m at County today because of the palpitations. When you’re fifty-one and have health insurance and your heart starts hiccupping, you go get a cardiac workup if you’ve got any sense at all. I fancy myself a woman with sense. I did see a nurse practitioner a couple of weeks ago, but it didn’t go well. I was in full panic mode, with a racing heart and sky-high blood pressure. The N.P. hooked me up and made sure I wasn’t having a coronary. Then she ordered a blood workup, an echocardiogram, a 24-hour holter device to monitor my heart.
I haven’t been back since. Didn’t show up for my blood draw; blew off both those heart tests. I’m not unconcerned—it’s all I think about—but I can’t let myself panic like that again. I dodge doctors but obsess over my health, hyper-focused on every little blip and tic in my system. It’s a poisonous blend with the power to make me miserable for weeks or months. Maybe one day it will kill me.
At least I’m trying to find a good therapist.
“Looks like this runs in the family,” the intake counselor murmurs, scanning my chart.
She means anxiety, not avoiding doctors. “You could say that,” I nod.
My story makes for a neat little narrative that mental health professionals understand. A mother with crippling anxiety who met with an early death. Her daughter still processing that trauma thirty years later, with worry in her DNA, worry in her bones. Now the counselor tells me there’s a clear category for my neurosis in the new Diagnostic and Statistical Manual: Illness Anxiety Disorder, Avoidant Type. I appreciate the name—it’s hard to deal with a problem if you don’t have words for it. But naming something only goes so far. When a phobia grips you this hard, triggering the flight instinct that kicks your system into overdrive, amps circulation and raises blood glucose, wrecks the stomach and dilates the pupils and even gives you a low-grade fever, there’s just no easy way out.
“It’ll be a couple months before we can get you in to see a psychiatrist for a medication consult,” the counselor says.
Two months. Damn. I ditched my SNRI several years ago but I need it again. It doesn’t help with panic attacks, but it calms the noise in between those attacks. I absolutely cannot ask my physician to write me a prescription without going in for a visit— doctors just don’t do that kind of thing over the phone. So here we are.
“At least you can get started with therapy. Let’s get you set up with one of our social workers.” She pauses. “Also—I’m sorry about this—you’ll be receiving a call from our nurse practitioner soon to schedule a brief physical. That’s just part of our regular protocol.”
Oh. Oh hell no. There it is again, the gut twist, the galloping pulse. This time it triggers a hot flash, sweat gathering at the roots of my hair, in the crease of my neck. I mop my face with a tissue. “Is that absolutely necessary?” I ask.
The counselor watches me closely. “Well,” she says softly. “Maybe we can hold off on that for just a bit.”
I wasn’t always this way. A trip to the doctor meant nothing to me when I was little.
Dr. Shaw was my guy, a mild-looking man with a fawn-colored moustache and suit to match, humorless without being dour. He knocked my knees with his hammer and percussed my belly for the sound of my healthy liver, examined the knobs of my spine and squeezed pearls of blood from my fingers. Everything was always fine. Even when I spiked a fever or took on a wracking cough, nothing was ever really the matter. Shaw made his recommendations, which generally involved the use of over-the-counter syrups. In the end, time made all problems go away.
It was Mom who fretted through my illnesses. When a stomach bug hit, she’d sit on the edge of the tub making sounds of pity while I coughed up my dinner. I’d heave once and she’d tsk and sigh, twice and she’d groan, as though it would have been better—or even possible—to quit after the first retch. She brought me to the doctor for the least little thing—when my coughs lasted longer than a day; when I didn’t menstruate by age thirteen. Occasionally fear for me made her seem almost angry. When I suffered chronic nosebleeds the summer I was fifteen, she brought me to Shaw to have the vein cauterized, and a second time when the first attempt didn’t work. One morning a few days later, I stood up from breakfast and started streaming again, all over the yellow linoleum. “For God’s sake! Still?” Mom threw her hands in the air. “This is the last thing I need!”
“Sorry to inconvenience you,” I snarked. Christ, I thought, she isn’t the one with a permanent ice pack mashed to her face. It didn’t occur to me that she would have been frightened. Or that she knew things I didn’t—about clotting disorders and cancers, terrible unthinkable loss. To me nosebleeds meant nothing but inconvenience. And pain, of course. Shaw’s needle tipped in silver nitrate burned its way up my nose a third time before the bleeding stopped for good. Finally—one less thing for my mother to worry about.
She took pills for her nerves—little jewels, perfectly round. An exotic shade of blue, like the bells of a grape hyacinth. When I was five my brother toddled into her bedroom, unzipped her purse and dug around in there until he found the vial. Child-proof caps were invented the year he was born, but if that bottle had one, it didn’t stop him. He tipped it and poured out the pills. Maybe he put one in his mouth and spat it out, or maybe he didn’t even do that; either way my parents ran for the ipecac when they found him. I stood in the hall outside the bathroom, heard him choke and gag. “Can you see anything?” Mom asked. I imagined her peering into the toilet for a glimpse of blue. My brother was fine. But it was clear to me that my mother was taking a kind of beautiful poison.
She swallowed those pills every morning with her cup of instant Sanka. I knew their name: Stelazine. A private, family word, like a silly term for genitals or a dumb name for the cat. Or like all those Yiddish words my older relatives used, the ones you never heard on TV—chazzerei for junk; oyver-botl for old and senile. Stelazine was homely as toilet tissue, something your mom ran to the store to pick up but didn’t discuss much outside our apartment.
Years later, twenty-two and assisting at a school for special needs teens, I would attend an in-service medication training and learn that Stelazine is used to treat schizophrenia. At first I thought I’d misheard. I knew my mother wasn’t psychotic. She was just a worrier body and soul, the way other people were lawyers or farmers or Italians. Worry kept her cloistered in some pocket in her head, distracted, startling at the sound of a car backfiring, the scent of a struck match. “What’s that smell?” she’d snap, standing by the stove, nostrils flared. A smell meant ruptured gas lines, invisible pockets of poison. She had a nose like a bloodhound and could detect odors that the rest of us couldn’t, and her neural pathway from perceived odor to near panic was well worn.
She was convinced a pedophile lurked in the leaf-blown trolley underpass. She made the family take a two-day train ride to Florida because flying terrified her. She spent every fourth afternoon in her bedroom with the blinds closed, unable to face anyone or anything.
But she wasn’t schizophrenic. Right? This was 1987 and Prozac had only just hit the market; I didn’t even have a consumer’s rudimentary knowledge of mood-altering drugs. The school psychologist didn’t explain that anti-psychotics were sometimes used to treat anxiety. I couldn’t ask Mom—she’d passed away months ago. For a long while after that, I wondered if she’d been misdiagnosed.
I had no way of explaining why my mother took a powerful anti-psychotic for nearly twenty years. I wouldn’t hear Stelazine mentioned again for another decade, when I saw the film 12 Monkeys for the first time. Bruce Willis is James Cole, sent back in time to before a pandemic killed off 99% of the world’s population. He’s supposed to be collecting data, but time travel has messed with his head—he’s raving, violent, has to be sedated. “The medic gave him enough Stelazine to kill a horse,” the detective tells Cole’s psychiatrist. Cole is crouched in a cell, twisted and dull-eyed, a terrific string of drool hanging from his lower lip.
I sat in the theater and felt a jolt at the sound of her drug, that familiar word made uncanny in the dark space of the big screen. Faint light glinted on that rope of spittle, on the bloody mess of Cole’s cuffed hands. I wondered again what all those years on the wrong medication did to my mother’s body. I wondered what her doctors could possibly have been thinking, that Stelazine seemed like the right solution.
Soaking in It
I gestated in a soup of that drug. Hyperbole perhaps, but just barely. The effects of Stelazine on the developing fetus have yet to be studied, but we do know for sure that it crosses the placenta, and because the dangers are unknown, its use is only recommended during pregnancy if the benefits to the mother outweigh the risks to the fetus. Not only did my mom take Stelazine through all three trimesters, she nursed me for two years on the stuff. “You got a Masters Degree in breast feeding,” Dad liked to joke. “Your brother got a PhD.” Mom was proud of having nursed us for so long in the 1960s, when formula companies advertised aggressively and most Americans bought it. Today she’d be urged to forego the benefits of human milk in favor of not dosing her babies with psychotropic meds. There was Stelazine in my first food, this drug that changes brain chemistry, impacts neurotransmitters, whose possible side effects include drooling, tremors, twitching, rigid muscles, trouble swallowing, fainting, fever, confusion, seizures.
But, you know, I guess I was fine. Small for my age, and not particularly athletic, but I’ve never been one to confuse chronology with causality. I spoke early and often. With a father who doted on me and a mother who could barely let me out of her sight, I knew how important I was and I let the world hear it, yammering at anyone who would listen. When my little brother emerged from his own soup of drugs, I felt he was my very own baby and I bossed and mothered and kissed him often, giving him a stream of colds and a nasty case of chicken pox when he was one year old. He was otherwise healthy, plump and perfect, no skeletal anomalies, no truncated limbs or cleft palate. We were typical kids, Joanie and Bobby, one girl and one boy exactly three years apart, like in an ad for detergent or Shake’n Bake. Our mother stayed at home making sure we were well-fed and well-rested and that we took our liquid vitamins. Our father taught art history at a Catholic women’s college, coming home on the trolley car at night in his long coat and fedora, carrying his briefcase.
Mom had no interest in children before she found Stelazine. Dad wanted kids, lots of them, but Mom, un-medicated and miserable, wouldn’t hear of it. In ’62 after a number of false starts, she found her blue pill and had a change of heart. She would give my father children, but only if he took her to Europe first. That’s Dad’s version, that she basically strong-armed him into spending their life’s savings on a vacation. Honestly, who could blame her? She was thirty-seven, a formally-trained artist who’d never been further from Boston than Cape Cod. They went to London by Ocean Liner in ’63—Mom couldn’t bear to fly—then crossed the Channel to the continent. Mom could tell you every single thing they ate on that trip, the zuppa di pesce and salade niçoise and brioche and white peaches. She sketched the Duomo and the canals of Venice. Then they came home and conceived me on the first try.
You could say I owe my life to Stelazine. That drug gave me everything. A mother who actually wanted me, who didn’t neglect me or check into McLean for months at a time. I was given books and music lessons and a microscope. My teeth were straightened and I went to good schools. It was a better childhood than either of my parents had, because of Stelazine or in spite of it, I’ve never known which.