If I had named the beast I would have called it Dezreen.
Then as I scaled the sidewalks of First Hill, ambulances and scrubs and wheelchairs in orbit around me, I could have said, to no one in particular, that I was there because of Dezreen—a single entity on which to fix my fear as I revolved into one of the dozen steel and glass buildings where I would spend much of the year.
Without a name it felt like a thousand different things. Without a name it felt like madness.
The real Dezreen was not a beast at all, but a woman. A warm, delightful woman who in December 2006 abruptly sat up in bed at her home in Auburn. “My head is killing me,” she told her husband. He brought the 26-year-old, just over eight months pregnant, a children’s Tylenol.
Dezreen swallowed the low-grade painkiller and ran to the bathroom—and retched the pill and everything else she’d consumed that night.
She described the headache as the worst of her life and was soon in an ambulance bound for Harborview Medical Center, where a CT scan revealed a subarachnoid hemorrhage. A neurosurgeon would later call the four-millimeter blood clot a “berry aneurysm,” which on an angiogram looked like a fleshy fruit bursting from the arterial branches at the base of Dezreen’s brain. In an attempt to save her life, the surgeon removed part of her skull and sealed the aneurysm off from the rest of her veins with a titanium clip.
Six weeks later I would check myself into an ER just a few blocks away. I’d had what my general practitioner believed was an ear infection, which felt like a knife to the back of the head. But I knew better.
Assigned to write a story for this magazine about three medical survivors, I had interviewed an Iraq war vet whose leg had been blown off by an RPG; a man whose scalp had been ripped from his skull by a grizzly in Glacier National Park; and Dezreen, a native of Jamaica, who, a hospital spokesperson informed me, miraculously survived both brain surgery and an emergency Caesarean section within the span of a few hours.
I met Dezreen in her Harborview room. She wore a pink jumpsuit. A soft white skullcap covered her surgery scar. Her husband was there and so was their new baby girl. The bleached, sterile odor of hospitals was masked by the sweet, damp smell of the newborn and an oversize suitcase that disgorged a whopping pile of clothes, baby blankets, and the domestic detritus that comes with living in a hospital for two weeks. In a creole accent, Dezreen told her story. Her husband nodded and added details. The aneurysm had nothing to do with the pregnancy or Dezreen’s health. Though there may have been unknown genetic factors, the aneurysm was random—the way a lightning strike is random.
Dr. Laligam Sekhar, her neurosurgeon, confirmed the diagnosis. When I interviewed him six days later he told me that had Dezreen ignored the symptoms she would have been dead within a week. He casually described to me her symptoms, common to all aneurysms: severe headache, nausea, disorientation, stiffness in the neck.
As he spoke I felt my throat tighten. I’d had a headache for weeks. My neck, come to think of it, was often stiff.
Late in the afternoon on January 23, 2007, midconversation with a coworker, I stood up from my desk. “I’m sorry, I have to go.” I rushed out onto Western Avenue, cracked open my flip phone and called Rochelle, my girlfriend of three years. “Meet me at Swedish.” What? “The emergency room. I think I’m having a stroke.”
The ER doc on duty, a burly guy with blue eyes and blond bangs that fell over his forehead like a surfer’s, ordered an EKG and a blood test. He shined a mini flashlight into my pupils. On the intake form I had written that I felt dizzy and had a stiff neck. He could find no cause for these symptoms, but prescribed me medication for dizziness, and Rochelle and I went home.
That could have been the end of my brush with hospitals. Instead I became a regular on the First Hill medical circuit. By year’s end I had my own ear, nose, and throat guy, my own gastroenterologist, my own dermatologist, and my own urologist.
How do you feel right now? Stop and think. Does your back hurt? You can search “back pain” online and find that it could be the result of kidney disease, ovarian cysts, testicular cancer, an aneurysm, or a cancerous tumor.
And that weird mark on your hand? Was that even there yesterday? Google it and find that—who knows?—could be basal cell carcinoma, squamous cell carcinoma, or melanoma.
“Almost any symptom you can think of, if you’re not careful, will send you on a path online that will lead you to a serious illness,” says Dr. Stacy Shaw Welch, a psychologist at the Anxiety and Stress Reduction Center of Seattle, where, in addition to panic disorders and obsessive--compulsive disorders, she treats what the American Psychiatric Association’s fifth and latest edition of Diagnostic and Statistical Manual of Mental Disorders (or DSM-5) calls “illness anxiety.” (Earlier editions called it “hypochondriasis.”)
The DSM-5 estimates that between four million and 31 million Americans experience some form of illness anxiety, which it defines as “a preoccupation with having or acquiring a serious, undiagnosed medical illness.”
The causes are complex and vary from person to person, says Welch, but a search engine query often triggers it. Googling symptoms, she says, isn’t uncommon, or even necessarily bad. But you have to understand that the algorithms of search engines favor cancer over carpal tunnel. You have to know what you’re getting into.
What I got into was a binge.
On March 29, 2007, two months after the ER visit, I sat in front of Dr. Mien-Chi Chen, an otolaryngologist—ear, nose, throat doc—at the Polyclinic. In his report of the visit Dr. Chen wrote, “This is a pleasant 33-year-old gentleman who self-referred for consultation regarding persistent left greater than right posterior neck pain.” (“Sore neck” on Google is the key to a house
of horrors: aneurysm, heart attack, neck cancer.)
He suggested a nasal endoscopy, which meant a long, skinny cable shoved up my nostril. He sprayed my nose with a local anesthetic, and I looked over at Rochelle sitting in a chair by the door. She took an exaggerated inhale and a slow exhale, signifying that’s what I should do too. Breathe.
A camera at the end of the cable up my nose streamed video to a monitor, which I could see out the corner of my eye. It looked to me like the inside of a sarlacc, the man-eating pit monster in Return of the Jedi. I imagined Chen unearthing a tumor the shape of Boba Fett’s helmet and telling me the end was nigh. He found nothing. But concerned with my neck pain, he sent me to a radiologist.
Oh, radiologists. I appreciated them the most. They didn’t fret over my potential diagnosis. They were just there to take and interpret pictures, and did so in a cool, calm way that put me at ease.
I’d strip down to my underwear and socks and slip on a backless hospital gown. The technician might joke about how pale my legs looked against my black socks and tell me to lie down on, say, the bed of the MRI machine. They gave me the same instructions Rochelle had, but for a different reason. “Inhale and hold it,” they’d say just before they captured an image. “Now exhale.”
In these moments I was almost at peace. I’d listen to the whir of the MRI machine that enveloped my body, and to the flat, inflectionless instructions of the technicians, and know there was nothing for me to do but lie still and let the tech gods seek out the source of my impending demise.
The doctors were different. They made the intense eye contact of the adequately concerned. They paused before dispensing the truth, as if the truth were something they suspected I didn’t really want.
During consultations I would distract myself with unrelated details. I’d sit in front of my gastroenterologist and focus on his tie or the way his thick, graying hair made his face look tiny, or the three-year-old issue of Wine Spectator flipped open on the exam room counter.
That same specialist became the source of my most invasive procedure.
I had gone to him because I’d developed trouble swallowing. (I’d Googled it: stroke, multiple sclerosis, esophageal cancer.) And because I’d also complained of constipation (Parkinson’s disease, colon cancer), he suggested he conduct an endoscopy and colonoscopy at the same time.
I didn’t eat for 24 hours before the procedure and drank the obligatory saline solution that was essentially a diarrhea-inducing enema. The next morning I reported to Dr. Tiny Face’s office, weak and hungry. I was sedated but conscious for the endoscopy, for which the doctor and a nurse forced a camera-wielding pipe down my throat. I choked and gagged and the nurse kept placing a warm hand on my shoulder. Then they put me to sleep and the doc probed the ultimate sarlacc.
I was awake for the ride home but I don’t remember it. Rochelle must have had to fold me into the front seat of our beatup green Saab. I awoke from a long nap later that night. My throat felt raw and it hurt to swallow. I’d read that if an endoscopy goes bad it can tear your esophagus and you can bleed internally, sometimes to death. Tiny Face should have known better than to tell me I could call him for any reason. I dialed his office, which patched me to his home phone. It was 11pm. He talked me down.
On my LEFT arm I found my doomsday asteroid, my hammer of god—a BB-size lump.
The next day: no sore throat, just as there were no significant findings during the endoscopy and colonoscopy.
I suspected at this point that it was all likely in my head, and that my reading material wasn’t helping. In addition to WebMD and similar sites, at some point I read a story by Marjorie Williams in Vanity Fair. It detailed her battle with cancer, chemo, and fear of death.
The piece was published posthumously, and Williams, who had found a tiny lump near her stomach while talking on the telephone, spoke to her readers from beyond the grave: “Would you notice if you had a sudden lump? Would you be sensible enough to do something about it? How would your mind react? For all of us, those wonderings have a luxuriantly melodramatic quality. Because surely that isn’t really how it works; you don’t just stumble onto the fact that you have a lethal cancer while you’re gabbing on the phone like a teenager.”
Her questions sent my fingers all over my body. On my left arm I found my doomsday asteroid, my hammer of god—a BB-size lump. A dermatologist agreed it was troubling. During an office visit on August 8, 2007, he used a tiny cylinder to slurp up the mass. I didn’t hear anything but I imagined if I listened closely enough it would sound like one of those pneumatic tubes that suck your bank deposit off to some unseen room to be counted.
A week later my caller ID lit up. It was the Polyclinic. Inhale. I picked up the phone. The mass was benign. Exhale.
Around that time I also received a call from my general practitioner. During one of my many scans, technicians had spotted a foreign shape on my liver, he said. I went in for an ultrasound, which confirmed the scan’s findings. The radiologist wanted to wait a few weeks and see if the spot on the liver was growing. That meant a month or more of worry. Again, for no reason: The spot hadn’t grown and was determined benign.
I was exhausted. So was Rochelle. I looked up from WebMD long enough to realize our lives had changed. Before the whole thing started we had talked of getting married. I never wanted to bring it up anymore. She didn’t seem to either. She was tired of the constant state of worry in the house. And the bills were piling up. My health insurance provider couldn’t keep up. The ER visit alone cost me hundreds of dollars, and all those scans, they don’t come cheap.
By the time my next symptom surfaced—pain in the groin, which I diagnosed as testicular cancer—I was over it. I underwent the tests, including an ultrasound (nothing), but I knew I had to change.
I wasn’t alone. Microsoft funded a study around that time on cyberchondria. The researchers estimated that 2 percent of all online searches are related to health, and that query results give the impression that lethal diagnoses are astronomically more prevalent than they actually are. (A search for “headache,” for instance, led to “brain tumor” as frequently as “caffeine withdrawal,” despite the minute incidence rate of brain tumors relative to missing a morning coffee break.)
I weaned myself off looking up every symptom. If the notion of calling a doctor popped into my head, I’d turn off my phone. It wasn’t abrupt, but by the end of 2008, I was, for the most part, done seeing doctors.
It was too late for Rochelle. There were other problems, but my anxiety hadn’t helped. We lived together another few months before she moved out.
In June 2013, I visited Dr. Welch, the anxiety specialist, in her eighth-floor office. Patients in the lobby pecked at their smartphones, never looking up until their clinician walked into the room. The two would make eye contact and wordlessly disappear down a hallway to discuss the client’s eating disorder, obsessive-compulsive behavior, or illness anxiety.
In her office, Welch sat in front of a window overlooking Fifth Avenue. Purple blouse, purple Band-Aid on her index finger. The Red Lion Hotel logo across the street seemed to float next to her head. Red Vines and animal crackers, presumably for her adolescent clients, sat on the coffee table to her left.
I am going to die. You are, too. But I know I don’t want to die the death of a thousand stethoscopes.
I told her my story, about Dezreen, my obsessive Googling, the many, many doctor visits, and about Rochelle. I asked if she thought what I had was illness anxiety. I expected her to pause before answering. I had seen so many doctors pause before dispensing the truth. Welch just said, simply, “Yes.”
She confessed that she was surprised that I had seemingly rid myself of the problem. She sometimes consults clients for months before anything is close to resolved. But the solution is often very similar to mine: Stop the behavior. In my case that behavior was constant online research.
I asked her what she thought might have caused my anxiety. There was no way of knowing without more info, more evaluation, but she said it can often be a fear of the inevitable. I think she’s right.
I thought I was dying because I was. We all are. At 33 my hair was beginning to thin, my muscles softening. Hangovers lingered longer than they once had. I was, I think, confronting my own mortality for the first time in a significant way. I was anxious about where I was in my career. I was anxious about not having children, about not feeling ready to ask Rochelle to marry me.
I still get scared. I’ll feel a pain in my back and worry. But I’ll resist the urge to search the Internet or to make an immediate doctor’s appointment. I am going to die. You are too. But I know I don’t want to die the death of a thousand stethoscopes.
It also helps if I don’t dwell on the time I spent in hospitals, though I do still travel back to that year occasionally, to a day right in the middle of the whole hypochondriacal shitstorm.
It was July. My birthday. Rochelle woke me up early, like 5am early. I had no idea what she had planned. We drove up I-5 to Anacortes and boarded the ferry bound for Friday Harbor. I still didn’t know what we were doing until we walked into the office of a whale watching service.
We boarded the Western Prince II with two-dozen other passengers. The 46-foot, twin-engine boat sped along the Strait of Juan de Fuca, bobbing to the current. Before we spotted a single creature, I felt both exhilarated and calm. I was 34, had a few stories about to be published in a major national magazine, and was out on the water with the woman I loved. I had to concede, too, that my body, it felt good. I was healthy, and in that moment I knew it.
The Western Prince II’s captain tracked down an orca pod, maybe five black-and-white bodies, slick and big as Saabs. We all rushed to the starboard side, cameras at the ready. It was cold, and everyone, including complete strangers, huddled together. I was so close to Rochelle I could feel her heartbeat, the rise of her shoulders as she inhaled the crisp ocean breeze.
The whales weren’t shy either. They crested just yards from the vessel and plunged back into the sea. Up and down. Each time they surfaced, we could hear the air escape their blowholes. An ancient sound. The air came in. The air came out. And it would until their dying breath.
Published: August 2013