My friend and teacher, Sean Murphy told me in a long and valuable email that chronic illness is a deep spiritual calling--that he has heard other people with Myalgic Encephalomyelitis also known as Systemic Exertion Intolerance Disease say it was the best thing to happen to them, and as a fellow me/seids patient, he didn't quite believe them. I wrote back and told him I didn't believe them either, and that, frankly, I was furious and still grieving that I'd been felled by this disease, cut down in the middle of my fifties by a wayward virus or biotoin. I was still in deep pain at the time I wrote him. Still angry and frustrated that after thirty years of careful attention to my hygiene around my students (who year after year would come to school sick), a possible virus/bio-toxin got me anyway.
Who knows where I picked it up. I read that it takes five to six weeks for mono (which is caused by a virus) to strike one down. Five or six weeks earlier, I'd been in Taos, New Mexico on a silent writing retreat. Did I contract it on the airplane? In the airport restroom? At the food market the day I arrived for the workshop? From the food at the retreat? From my roommate who has a child? It matters not at all.
One day while surfing online, I saw a photograph of a young woman who'd contracted a resistant strain of tuberculosis. The photo horrified me: she looked emaciated with tubes that snaked into her lungs. The article accompanying the photo explained that this resistant form of TB is running rampant in India where the population can get antibiotics easily. The article went on to state that resistant bacterial and viral diseases are becoming a global problem. They are rapidly spreading around the world because of the ease of travel.
It scared me and the thought of that made me want to huddle in my house and never go anywhere, but I can't live like that. I've stared down too many fears already--fighting my way out of semi-agoraphobia in the late 80's and early 90's after I was randomly attacked. I refuse to let fear rule my life.
My husband Bob emphasized that perhaps we couldn't travel the way I'd planned but that we could still see the world, just not as much--that we could still go to Paris, create a home base and just see fewer sights with down time for me in between. Slowly once again I came to realize that my life wasn't over, but I'd have to learn to live inside this illness. I might have to obtain equipment: a cane, a wheel chair, anything to help me navigate through the world as a disabled traveler. Chronic is chronic, but it isn't death.
All those years of training: meditating, slow walking, and writing practice by Natalie paid off. At my last retreat I told her (in a private moment,) she'd taught me well. She smiled and nodded. I'm fast by nature; learning how to live this way has been like being forced to learn how to walk on the ceiling; it's like having to transform from a gazelle into a slow rambling sea turtle.
How could I find the serenity I'd lost when I fell ill back in 2009? When I lost my career, my social life, my mobility? By adapting and staying in the present moment. Now, most days when the weather is good, I enjoy sitting in the backyard, under the patio ceiling fan, with my two dogs Petey and Penny Lane as company. Most days while my husband works, I find myself content to read, write, and sip tea. Slowly, day by day, I am learning to sit back, relax, and let the great world spin.