What the Heck are They Talking About: Neurological CFS: "I used to be able to think..."

A brain just like mine:

Whether the assault is by car accident or viral assault - the result is brain damage: sometimes permanent. There is substantial organic research in this area, as well as the role of infectious triggers on the central nervous system and immune system specifically. The biological role of entroviruses is also substantial and connected to biomedical research clearly connecting the neurological disorder of ME/CFS (ICD 10 G93.3) with these viral triggers.

Obstacles to further research: lack of funding, insurance politics and the repetition of unproven and tangential psychiatric speculation regarding the biopsychosocial role in "fatigue."

"He has suffered brain damage, caused by an undetermined virus that targeted his brain, but he clearly remembers his old way of thinking. He has written a book called In the Shadow of Memory, about the damage done to his brain and the process of rebuilding his life.

Skloot reads from In The Shadow of Memory: "I used to be able to think," the book begins. Now, his memory and abstract reasoning abilities are extremely diminished. He finds himself doing things like saying "blood tower" when he means "rush hour" or putting coffee beans in the carafe instead of the filter basket.

He continues reading, "Sometimes I see my brain as a scalded pudding, with fluky dark spots here and there through its dense layers, and small scoops missing. Sometimes I see it as an eviscerated old TV console, wires all disconnected and misconnected, tubes blown, dust in the crevices."

To make any sense at all, Skloot says he needs to avoid all distractions. During the interview, he has his eyes closed so he doesn't see the studio engineer, his wife, or his open book.

This need to limit outside stimuli is one of the reasons he moved from downtown Portland to the country -- he needed to be in a place where things are slow.

Skloot says his neurological condition is not all bad. It has given him a crash course in the essentials of life -- because he has no choice, he has learned to live in the moment and seek harmony, rather than mastery.

His writing process, too, has completely changed -- it took him over eight years to write the book -- but he finds he has become looser and more open to discovery, and, in many ways, he appreciates the slower pace of his life."

Floyd Skloot

Marit Haahr
The Infinite Mind: How We Think
Week of September 27, 2004

In previously published works, Floyd Skloot refers to his diagnosis of ME/CFS, however, in The Shadow of Memroy, he simply eliminated "fatigue aka the 'F' word" from the discussion. By simply reframing this neuroimmune disorder using more specific and biomedically accurate terms, gained a much wider audience garnering respect instead of curt dismissal.

See my post on using the "F" word.

What the Heck are They Talking About: Neurological CFS

"I used to be able to think..."

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