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The Mystery Illness That Plagued This Writer For Years

0 2 years ago

On Saturday, November 4, 2006, I woke up semiparalyzed. My legs felt lead-plated; the signals instructing them to move seemed to get scrambled on the way down. It was as if someone had sloppily replaced my limbs with those of an elephant and connected only 10 percent of the nerves. My brain felt like an overripe peach, its juices threatening to seep from my eyeballs. Pain glowed out of my bones.

For seven long years, something hadn’t been right. On countless mornings, I’d wake up exhausted even after a full night’s sleep. When I exercised, my body reacted like an old nag, one that flattened its ears and bit when spurred. Early on, my doctor had gently asked about my stress levels. I burst into sobs: On top of my teaching job, I was building a straw-bale house outside Santa Fe with my own hands; in the meantime, I was living in a pair of ramshackle travel trailers with my husband, who was in the midst of a bipolar breakdown. “Sounds like you have good reason to be stressed!” my doctor declared. Days after the appointment, though, I found myself dragging my hand along a wall to steady myself, afraid I might pass out, and wondered, Could stress alone really do this?

I buckled down to reorganize my life, figuring my body would follow. I finished building the house. I accepted that no amount of love would stop my husband’s manic spending sprees or pull him from his suicidal gloom, and got divorced. I forced myself to have dinner with friends when all I wanted was to lie prostrate under my comforter. I rejoined a wilderness search-and-rescue team, remembering how, before I started building my house, I’d relished hiking through blizzards at 3 a.m. in search of some lost soul. I started a new relationship and volunteered for Big Brothers Big Sisters to channel my ardent maternal energy. I even went to graduate school, pursuing my dream of becoming a science writer.

But while all of that productivity lifted my mood, my physical endurance was shot. Life was a constant uphill slog. I had figured that time would take care of whatever was up with my body. But instead, time led me here: paralysis.

I had moved temporarily to Washington, D.C., for a science writing internship and knew almost no one, so I flew to San Francisco, where my new boyfriend lived and where I hoped I’d find top-notch medical care. I staggered into a neurologist’s office, panic-inducing possibilities reeling through my mind: Multiple sclerosis? Parkinson’s? Lou Gehrig’s disease? The doctor came back to the examining room, clipboard in hand, his expression indecipherable.

“There’s nothing neurologically wrong with you,” he pronounced flatly. “You have chronic fatigue syndrome.”

Fatigue? I thought. Did you fail to notice I’m fucking paralyzed?

I seemed to have molasses clogging my brain’s synapses, but I managed to mumble some questions about tests, treatments, other doctors. He was silent. Finally, I asked, “What if your wife were sick like this?” I studied his face for sympathy, or sheepishness, but it was blank.

Bizarrely, Google turned up only one chronic fatigue specialist in the entire Bay Area. I was wary when I arrived at his office and saw a flier touting the healing powers of acai juice, which he sold in wine bottles for $35 a pop. But I went ahead with the exam, after which he theorized that I had suffered a “cytokine storm,” an immune system freak-out that had inflamed my nervous system and triggered my paralysis. He recommended supplements—Siberian ginseng, acetyl-L-carnitine, R-lipoic acid, curcumin—and ordered tests to determine whether Lyme disease, thyroid issues, or liver problems had contributed to my chronic fatigue syndrome. I swallowed mountains of candy-colored pills, but they could have been actual candy for all the good they did. The tests showed minor abnormalities and low iron and B vitamin levels; interesting, but hardly an explanation. So I dug into the research literature myself.

Since childhood, science and math had been my source of safety, reliability, sanity. My mother was prone to unpredictable moods and stretches of self-imposed isolation. It never occurred to me that she might have a mental illness, even though she spent hours every day in bed playing solitaire. She could fly into a rage at the smallest infraction, furiously hitting me with a belt if I ate my Twinkies before I’d finished lunch. But we loved each other ferociously. I believed I’d been brought into the world to save her.

Science and math had provided a practical respite from that exhausting effort; among the most pleasurable hours of my life were those I spent one wonderful weekend powering through an entire year’s worth of Algebra 2 for a correspondence course, scrawling ellipses and parabolas on worksheets that piled up next to me. I started college at 14. After my mother died when I was 18, I earned a master’s in mathematics from MIT.

Now I pored over jargon-filled research, my brain sputtering as I gradually pieced together what was happening to me. Chronic fatigue syndrome (CFS) is also known as myalgic encephalomyelitis (ME/CFS), meaning “muscle pain and inflammation of the brain and spinal cord.” Apparently some trigger or combination of triggers—staggering levels of stress? an exposure to toxins?—had tilted my body into an altered state, causing ME/CFS.

Unfortunately, the research on ME/CFS sucked. The studies were small, and scientists hadn’t followed up on them, so I couldn’t be certain the findings were even true. Researchers were starved for funding: The National Institutes of Health spent only $5 million per year on ME/CFS research, though the condition affected at least a million Americans. The scientists’ grant proposals were routinely rejected, sometimes on the grounds that patients’ suffering was all in their heads.

Meanwhile, my body told a profoundly different story. One day not long after my visit to the neurologist, I felt myself grinding to a halt as I navigated the aisles of the grocery store. I’d started the day feeling unaccountably better than usual, but by the time I got to the parking lot, I could hardly lift my bags into the car. Later, in the middle of dinner, I could no longer hold up a spoon. That night it was as if my feet were lodged deep in mud; each step meant wrenching them from sludge. Mentally, I was lumbering, like I’d taken too much cold medication—I saw the world in slow-mo through a dense sheet of plate glass. On the way to the bathroom I froze, and my boyfriend had to carry me back to bed. Hypothesis: Overdoing it made things worse. Intensive rest made things better. I learned to stop everything the instant I thought, I’m a little tired.


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