The Myth of Normal 61

a 120-word-per-minute typist, she now found her hands becoming rigid and clawlike, stiffening into near paralysis. Merely touching the keyboard was agony. When I first interviewed her in 2014, her physiognomy was grim, her face a rigid mask, her taut lips barely able to cover her teeth. She was unrecognizable to herself—and wholly incongruous with the person one encounters now, her smile quick and responsive. Within a few years of the onset of her disease, still in her early thirties, Mee Ok wanted only to end her life. Facing a death-sentence diagnosis, needing a wheelchair to mobilize, unable even to get out of bed without assistance, and anticipating that her torments would only intensify the longer she lived, she investigated the possibility of medically assisted suicide. “If I had been in a country where euthanasia was legalized, I would have fit all the criteria. The pain was unbelievable,” she told me. “There was no prognosis that really gave me a reason to stick around. I was losing my body so quickly, I knew that if I waited much longer, I was going to be trapped and I wouldn’t have even been able to push a button.” Today, in defiance of all conventional medical logic, Mee Ok— completely off all medications—walks, travels, and hikes independently. She is currently writing her memoir, albeit at the speed of fifty words per minute: relative to the shape she was in not long ago, a true victory. Scleroderma is among eighty or more related conditions dubbed autoimmune, each representing a virtual civil war inside the body. In effect, autoimmunity amounts to an assault by one’s immune system against the body it ought to defend. The particular form of the disease depends on which tissues or organs become the targets of this ruinous internal rebellion. If the nervous system is under fire, the result may show up as multiple sclerosis; if the gut, celiac disease or inflammatory bowel disease (IBD) such as Crohn’s or ulcerative colitis; if the joints and connective tissues, systemic lupus erythematosus (SLE) or rheumatoid arthritis (RA) or scleroderma; if the skin, psoriasis or autoimmune eczema; if the pancreas, type 1 diabetes; if the lungs, pulmonary fibrosis; if the brain, perhaps Alzheimer’s. In many of these conditions, several regions of the body are affected at once. Chronic fatigue syndrome—also known as myalgic encephalomyelitis (ME)—which affects