How do I describe cognitive impairment caused by M.E. to someone who doesn't have it? When it strikes I can't process language. Sentences don't stick, memory malfunctions. I hear the words coming out of someone's mouth, but they don't land in my mind. The words just glide around in my brain and I lose track of the sentences, the thread of the conversation. And worse than that I lose vocabulary, simple words. Last July the fog had descended while I was on a mentor telephone call with three of my Write To The Finish classmates and my teachers Sean Murphy and Tania Casselle. I was trying to tell Sean and Tania which week in August I would be in Taos, New Mexico for a silent writing retreat lead by Natalie Goldberg. I was trying to set up a plan so that my husband and I could meet them for coffee or dinner the week after the retreat. We were on the call for over an hour and I was tired. I could feel myself heading toward a me/cfs crash. I couldn't come up with the word airplane, so I stumbled around and said, "you know, that thing that you fly on to get somewhere." I laughed because Sean knows brain fog too; he's been living with me/cfs for twenty some odd years. He and Tania understood; thank God.
Imagine a writer suddenly unable to use the tools of her craft. When I was first diagnosed with this disorder, I panicked. I thought I'd lost my mind forever, that I'd never be able to finish my book, that I'd never pen another poem, that my life as a writer was over. On bad days when I'm in a crash and foggy, I can't follow a tv show, I can't follow a scene in a book I'm reading, I can't follow conversations, nor can I find the most basic words.
I can catch a glimpse of what those who suffer from dementia must feel like, what stroke survivors must go through. It reminds me of the book I read years back titled My Stroke of Insight by Jill Bolt Taylor, a writer who suffered a massive stroke and was by profession a brain anatomist. I remember reading her memoir before what I now call "the great crash of 2009." I admired her courage; how she had to begin at zero: moving from infant-hood back to adult-hood with the aid of a team therapists and her beloved mother.
I remember also not long ago, watching a documentary about Ram Dass, the author of Be Here Now, who also suffered a stroke and now lives in Hawaii. In one scene in the film, he's sitting in a room with his speech therapist; he tells her that many times he knows the word he wants, but he can't access it, that it's almost like he can see the image of the word in a closet. She coaches him, teaching him to hold up his hand, a way to signal to his listeners to wait, to not finish his sentences for him, to not fill in the blanks. He's retraining his brain--firing up new pathways. And as I watched him struggle that day while being filmed, I understood the frustration.
My husband's ninety-three year old mother suffers from dementia. When I first met her in her apartment on Thanksgiving day in 2010, she asked me to please forgive her, that she'd grown stupid in her old age. I smiled at her and said, "You're not stupid--you just forget things. I forget things too, so I guess we'll be stupid together." She liked that and warmed up to me immediately. The good news is that if I rest, the fog lifts just like it does on those chilly mornings when the sunrise finally burns it off and cautious drivers can see the roads and landscape ahead of them. And so I wait patiently, knowing that eventually the words will slowly, faintly appear inside that foggy landscape of my mind, and gradually once again I will be clear.