Living Under 5000 Feet of Sandstone

Posted on October 13, 2005 in Moods Travel - Conferences

At the weekend DBSA conference, I met a woman who suffered from ataxia. Ataxia is medicalese for “clumsiness”, an illness where you begin to lose control of your muscles. The National Ataxia Foundation identifies two different types: hereditary and sporadic. In the latter, the disease appears spontaneously, without any family history. The woman who I met suffered from this variety.

She squirmed behind a stainless steel walker, then chose a place in the back of the room. Sometimes a young African American man accompanied her, not as an attendant, but as a friend and an equal in bipolar disease. Her hands shook and flipped backwards as she gestured. Her legs wobbled. Within the wobbling was a fine shaking that covered her whole body. When she talked, her tongue lolled in the way of her words. Think of a woman as a river, meandering and sometimes dashing forwards as a rapid. She was 42 years old.

Doctors knew nothing about what caused her neurological breakdown. I have a local friend who also suffers from the illness. “I wish they would just give it a name,” she told me once. “I wish it was MS. But they don’t know. The doctors don’t know. They just tell me that it is the result of a series of small strokes.”

The woman I met in Fort Worth reported similar prognostications from her doctor. All she knew was that she grew steadily worse as she grew older. “I wish I had paid more attention to the symptoms when they first appeared. I didn’t do anything until I couldn’t hide it from my friends and family.”

She is on lithium, a drug that can spawn mild ataxia. For example, my hands shakes almost constantly. I’ve tripped on the stairs more than a few times.

No one knew if the lithium caused her condition. She was reluctant to go off it because, like many of us, she climbed the invisible ladder of mania and kept going. Lithium dammed the eroding force of mania. This woman did not want to go back there.

Having bipolar disorder is bad enough: having another neurological disease on top of the bipolar makes you feel like a fossil bed squeezed under 5000 feet of Navajo Sandstone.