“A Girl Behind Dark Glasses” by Jessica Taylor-Bearman

A Girl Behind Dark Glasses Jessica Taylor-Bearman Being a teenager is difficult. It’s a lot more difficult when you’re suddenly saddled with a debilitating illness. For those of you who’ve seen Jennifer Brea’s award-winning documentary “Unrest,” “A Girl Behind Dark Glasses” is the story of Jess, the English ME sufferer featured in the film. It […]

Tripping Out: Writing About Altered Perceptions

I’m currently reading Jessica Taylor-Bearman’s A Girl Behind Dark Glasses, about her experience as a teenager with severe ME/CFS. I’m interested in her story not just because, as someone with a chronic illness, I’m interested in the stories of other people with chronic illnesses, but because, like most people in her situation, she has to try […]

Why Aren’t You Writing V: Overcoming Illness and Disability

Last time we talked about different writing tools you can use. This time we’re going to talk about something particularly close to my heart: writing when you’re dealing with some kind of physical infirmity. Even healthy people will experience physical and mental fatigue, eye strain, and neck/back/hand pain if they spend too much time writing, […]

“How To Be Sick” by Toni Bernhard

How To Be Sick: A Buddhist-Inspired Guide For the Chronically Ill and Their Caregivers Toni Bernhard Foreword by Sylvia Boorstein The problem for most Western approaches to dealing with a serious or chronic illness is that they are based, whether they know it or not, on the concepts of objective distance and physical and rational […]

“Warrior Patient” by Temple Williams

“Warrior Patient Rule No. 1: Choose to live. Take personal responsibility for getting better. It is not your doctor’s job. It is not God’s job. It is your job. God and your doctors might help. And they might not.” This is the first rule Temple Williams gives in his often humorous, and even more often […]

In Which I Contemplate Day-to-Day Activities When You Feel Like Hell

I thought I’d take a break from book reviewing to meditate a little more on an issue of all-consuming interest for me–namely, my mysterious illness that may or may not be CFS/ME, an obscure strain of Lyme disease, babesiosis…the possibilities are vast and confusing, and your run-of-the-mill MD is left in a muddled quandary when faced […]