small meaningful things

Susanna Clarke’s chronic illness

Someone reviewed Piranesi on my rss feed, and it led me to this Paris Review write up on Susanna Clarke, whom you may know as the authour of Jonathan Strange & Mr Norrell. I didn’t know Clark was chronically ill:

For the past fifteen years, she has suffered from an elusive, debilitating illness—seemingly, a vengeful return of the malady that had briefly afflicted her in Bilbao. She has been given various diagnoses, including Lyme disease, Epstein-Barr virus, and chronic fatigue syndrome. Her most constant symptom has been overwhelming exhaustion, joined at times by migraines, brain fog, and photosensitivity, as well as by nausea, for which she now takes medication daily. At times, she said, bright sunshine has felt “like an oppression, a weight leaning on me”; she often retreats to a darkened room. In the late two-thousands, when her illness was at its worst, she was unable to get out of bed, experiencing depression, social anxiety, and agoraphobia.

Her husband remarked,

“Susanna is somebody who had to learn how to be ill”—that is, how to conserve her energy and accept her limits.

…which is something I deeply relate to. I think it took me years to learn how to be ill and work within its boundaries. It is difficult to accept that an illness is going to be chronic when I was so used to pushing the limits of my body for so many years. All those late nights and junk food.

Clarke told me that several things contributed to the eventual improvement in her condition, making “Piranesi” possible. At a private hospital in Hemel Hempstead, she received such alternative treatments as food supplements, an all-organic diet, and a version of homeopathy. She told me, “You’ll see people saying, ‘Oh, you shouldn’t go off on these alternative-medicine treatments. You should stick to proper science.’ ” But such critics failed to grasp that “nobody was doing the science—it was only the alternative people who were offering anything at all.” She went on, “It wasn’t like I had a choice. It was either that or nothing.”

Like Clarke, the only thing that worked for me was traditional chinese medicine and some fringe health stuff written by people who are not doctors. Doctors don’t treat patients seriously unless it is something that can turn up obviously on a medical test. For years people have been saying chronic illnesses like chronic fatigue, Myalgic Encephalomyelitis, even migraines are imagined. Now they are finally getting some attention because of long covid, which some people still insist doesn’t exist.

I think it is hopeful for me to know that people like Clarke can still somehow finish a book despite her illness (one of my other favourite examples is Charles Darwin, who wrote The Origin of the Species while chronically ill).