A stunning account of the onset of a form of neuromyelitis optica spectrum disorder, a rare autoimmune disorder that can cause sudden blindness and paralysis.
Broadcast producer Potter developed her illness after a bout of flu that left her feeling strange. The weirdness turned terrifying as her visual world shrank to a brown haze and then total blackness while her extremities developed a spreading numbness and her feet turned ice-cold. In the span of a couple days, she was hospitalized (H69 is the beginning of her insurance ID) and subject to multiple tests, but the doctors could find nothing wrong with her eyes. The problem was damage to the optic nerve and the spinal cord by her immune system. Treatment included injections of steroids and cleansing her blood of the destructive antibodies. Doctors assured her that she would recover, albeit slowly. Here, Potter’s personality as a go-getter, a fighter, a creative producer, and a meditator comes into play, as she delivers well-written daily recordings of her fears and frustrations caused by her total dependence on others. As promised, however, there was progress, and that story is fascinating. First, Potter began to see vertical lines and edges but only in black and white and in two dimensions; colors were the last to appear, with, in her case, some odd crossing over with the sense of touch. Though she left the hospital after two weeks, it was another year before she was back to reasonable mobility—and she still suffered from somewhat hazy vision. Potter used this time to ask scientists to explain vision but also to develop an idea for a science fair exhibit in which participants are wired to record their brain waves and have them translated into color patterns and musical sounds.
Patient narratives are a growing genre, and not all end happily. Potter’s has that positive aspect as well as illustrating one woman’s way of coping with a disease that touches on universal fears: blindness and paralysis.