Winter 1986-1987

Part Two of my three-part series on Sudden Onset ME. Onward through the spooky terrain of myalgic encephalomyelitis...

Copyright 2026 Hillary Johnson. All Rights Reserved.

I remained in bed for the next several months, a period notable in part for the wholesale lack of medical care available to me. It might have been the fourteenth century.

Once, I managed to see a well-regarded infectious disease specialist in upscale Encino, CA. George carried me piggyback-style from the parking lot to the front desk of the clinic. First, he needed to pull me from the car to a standing position. My leg muscles were so useless then I might as well have been paralyzed.

The doctor spent two hours with me, prodding, measuring, asking questions, drawing blood, X-raying me.

“It’s striking,” he finally said. “I’ve been seeing thirty to forty people a month in the last year with the symptoms you have.

“I have a friend at CDC,” he continued. “He was my frat brother in college. He recently went to Nevada to investigate an outbreak of this.”

“Hmm…” I responded, trying to follow. Two years later, I would interview the doctor’s old frat brother at the CDC. He was Jon Kaplan, the shaggy-haired government epidemiologist who would tell me that the internal medicine specialists who identified the Incline Village, NV outbreak were “quacks” and “publicity seekers,” and their patients—people he refused to interview or examine—were “Not normal Americans.” There had been “collusion” to an extent he had never before seen, he added, between the doctors and those who claimed to have an illness.

The Encino doctor provided a wheelchair for me after realizing that I could not walk. When a nurse wheeled me to the waiting room, George’s face was red, his head in his hands. He had been crying.

“I thought they had taken you to the hospital,” he said, having recognized by then a need for medical intervention.

In parting, the doctor had told me to call him in six months if I wasn’t better. He predicted I would recover in two years, a prognosis that inspired a fleeting desire to commit suicide. I called him two months later on a day I thought I might be dying.

The doctor listened to me for a minute or two, then interrupted.

“Miss Johnson, I have sick people in my waiting room. I don’t have time for this,” he said, his voice rising. “Don’t call me again.”

I think his frat brother, Jon Kaplan, must have let the doctor know about CDC’s verdict on the disease by then. People were reading about it in the newspaper, according to the agency’s epidemiologists, and “wanted to have it.” Agency wags posted at least one fake letter from a sufferer on a cork bulletin board for their colleagues’ amusement. It began, “Dear Sirs, I am sick,” followed by a paragraph-long list of sedatives, amphetamines, and vitamins. “They only work when I take them,” the dismayed patient wrote, signing his name, “I. Am Zappoed.” His address, “Worn Out, California.”

Okay—it’s kind of funny.

Unfortunately, the sole alternative for a real person in my condition by then was a matrix of self-styled healers, false prophets and medical grifters. They constituted a subculture mobilized to exploit sufferers of another hopeless-seeming disease, AIDS. They were moving fast to service this new and equally desperate population whose ranks I had joined. Their cures were seaweed and brown rice, garlic and aloe, deep breathing and good thoughts. “Victim blaming” was at the core of their enterprise. Tap three times on your thymus gland every morning, situated somewhere behind your breastbone, and repeat the words, “I love myself deeply and truly just the way I am,” and if you don’t recover, you obviously want to be sick.

After eight or nine months, magazine editors quit calling. I knew they suspected my problem was more volitional than real, but I never found the words to explain my dilemma in a succinct, credible-sounding fashion. The details sounded hyperbolic and likely, to some, like whining. The disease lacked provenance, gravity and a plausible name; it had all the credibility of a rape victim.

Unhelpfully, editors at newsweeklies were assigning cartoonists to illustrate stories making fun of it; Johnny Carson cracked jokes about it on his late night monologue; dean of the Infectious Diseases Division at Stanford, Tom Merigan, went on ABC television to explain, “People need an explanation for their anxiety.” He winked at the camera while delivering his homily.

In addition to the gaiety humming along the media channels, there was something more profound. I was beginning to realize how nearly impossible it is for people in their chronological prime to comprehend an illness that proceeds into infinity without either recovery or death. Anything in between tends to raise questions about the temperament and character of the sufferer, not her putative disease.

***

I slept round the clock. Days and nights were indistinguishable. When awake, I often sobbed for long stretches. Understandable, possibly, except that amid the sobs, I frequently burst into uncontrollable laughter—howling, screaming laughter. I tried to explain it to myself. My predicament was utterly absurd, was it not? Everywhere I looked, I saw hilarity. Me, laid out like a corpse on a sofa, unable to walk or even to stand in the shower, unable to wash my own hair because I could not raise my arms above my shoulders. The handsome, actor boyfriend, reduced to washing my hair! It was high comedy! Unsurpassed! Insanely funny! Except that, inevitably and quite suddenly, I would begin weeping again with body-wracking sobs.

Maybe you can imagine the effect these episodes had on the boyfriend. Once, he moved to kiss me, and I was suddenly overwhelmed with that sense of situational comedy, warped though it was. A prince kissing a frog, I remember thinking. My obsessive daily work outs, precision haircuts from my guy on E. 57th Street had long ceased and body dysmorphia was setting in. I turned away from him, laughing until I could not breathe.

Mostly, in my memories of that era, I am sitting alone on the sofa, either crying or laughing but always gasping for breath from the exertion of either, an explosive, painful pressure in my head. George is mostly not present, having taken refuge from the lunacy in another room.

I did not know what ‘Pseudobulbar Affect’ was until very recent years when I saw the phenomenon described in a public service announcement on prime-time television. “Sudden and inappropriate laughing or crying episodes,” is how it is described in lay terms. Patients with dementia, ALS, and traumatic brain injuries may experience pseudobulbar affect. According to a 2025 paper on the condition,

“Pseudobulbar affect (PBA) is a well-recognised and troublesome clinical phenomenon in a range of neuroinflammatory, neurovascular and neurodegenerative conditions. It is often under-recognised in the community, frequently mistaken for psychiatric manifestations, appropriate pharmacological treatment is often delayed…Despite its considerable quality of life implications and the challenges associated with its effective management, it is notoriously understudied.”

Today, drug companies advertise on television their concoctions that promise to alleviate pseudobulbar affect. In the world that was my reality in 1987, pseudobulbar affect was an odd blip, a curio in a museum filled with curios. I’ve been free of it for decades. I suppose I don’t need to add for this readership that in forty years, I’ve yet to see a single television ad for a drug to treat my far more serious brain injury, myalgic encephalomyelitis, or a public service announcement to inform people about its existence though it afflicts millions.