Adapting to Chronic Illness

I'm at a Vermont country inn for a few days of family holiday. Today a freezing drizzle deterred us from cross country skiing or snowshoeing, and I sat by the fireplace with Oliver Sacks's most recent book - The Mind's Eye. The book is a collection of Sacks's distinctive stories about people who have experienced neurological disasters. Sacks uses the stories to probe how the mind functions and how we frail but resilient humans adapt to dramatically altered circumstances such as losing the ability to speak, read, or recognize objects.

Pat, an active, sociable woman, suffered a massive stroke in her sixties that left her paralysed on the right side and unable to speak. Sacks describes how over the course of several years Pat learned to express herself by way of gestures and use of a list of words she could point at to name a topic or make a request:

Every so often, Dana [Pat's daughter] related, her mother would make a gesture that seemed to say, "My God, what happened? What is this? Why am I in this room?" as if the raw horror of her stroke hit her once again. But Pat was aware that she had, in a sense, been very lucky, even though half of her body remained paralysed. She was lucky that her brain damage, though extensive, did not undermine her force of mind or personality...

Pat's story, and others, reminded me how patients of my own had adapted to psychiatric ailments that, in the current state of the art, we couldn't cure. (I've disguised the vignettes.)

John had schizophrenia, but luckily not with any deterioration of underlying intelligence or other mental functions. When his symptoms acted up he channeled voices. To him the experience was real, but he knew that walking down the street conversing with hallucinatory companions struck people as odd. Since he liked to be out and about, he carried a cell phone, to look like others chattering with presumably non-hallucinatory conversational partners.

I was impressed with John's practicality, and passed on his technique to others.

Janet, in her forties, also suffered from schizophrenia. She was tormented by the conviction that she spoke in her sleep, accusing herself of deviant sexual acts. Her husband assured her that she slept soundly and said nothing, but she didn't believe him. She insisted on keeping all the windows closed so that passers by wouldn't hear her self accusations and think badly of her.

Closed windows made the house stuffy in the summer. This made for conflict with her thirteen year old son Alex. He persisted in opening his window and Janet persisted in blowing her top.

We held a family meeting. I said to Alex - "you know your mother has beliefs she can't shake that make her feel the windows have to stay shut." Janet nodded in agreement. "But if you're too hot in your room and sneak your window open, she'll understand and won't get too mad in the future." I was sure that Janet, who loved Alex and who had a sense of realism alongside her delusions, would agree. She did.

It was as if Janet lived on two planes. On one, her delusions were in charge. On the other, she could accept Alex's need to open his window. I was never sure whether that meant that at some level she saw her delusions as "unreal," or if, as a loving mother, she was willing to risk condemnation from her neighbors for the sake of her son.

I'd asked a patient who came from France what a French psychiatrist would say at the end of an appointment to a patient struggling to stay well. First she mentioned "continuez sur le bon chemin" ("continue on the same good path"). Then she cited, as more helpful to her, the single word - "courage." That rang true.

Clinicians who care for people with chronic conditions need to be skilled at rehabilitation as well as their own specialty. We need to respect and support our patients' capacity for courage.

Another of Sacks's patients made the point well: "The problems never went away, but I became cleverer at solving them!"