I'm a disabled artist with CFS/ME, a complex nuero-immune metabolic illness that causes me to be limited to my house and often my bed. Explore my life making art with CFS/ME through my blog and videos!
Sep 18, 2018 | Posted by Zeraph
Here is a question for you: Is your life small or large?
How do you know?
Is it possible to have a big life in a single, small room?
Or to lead a small life that is lived in many places?
Questions like these have become more pertinent to me lately. They surface when I am ensconced happily in my bed, writing, painting, designing or networking with other artists. They surface also when I am taking the comparatively hazardous journey outside, where the lights, sounds and unfamiliar vistas of the outdoors overwhelm me, sending my brain into a strobing cataclysm of sensory overwhelm.
They surface when I’m somewhere in between, too. When I’m in the living room of the house that I live in, a place I visit so infrequently that it seems like another country, taking a wheelchair ride to the shower or bath. At times like these, I may suddenly think, “My God—my world must seem to others so small—so sad!” But then that question bounces against a bigger and deeper feeling inside: “But my life doesn’t feel small or sad to me. Why is that?”
Perhaps I should explain a little about myself.
When I was twenty-five, I was enrolled in college at the University of Maine in Orono after concluding several years of traveling across the United States. I was studying to be an ecologist, I worked as a research assistant, and I was unhappy. At the time, I was engaged with a scientific field I no longer cared about in hopes of becoming someone I thought I ought to be—a proper scientist, not an artist who would never make much money. I wasn’t so much blossoming into adulthood as I was wilting. Life kept propelling me forward, rootless and unwilling, toward some future I could not conceive of and did not desire.
Perhaps that unhappiness was why I missed the first symptoms of my illness. Or perhaps it was simply because no one expects this to happen to them, this creeping and insidious sickness that hides in the shadows, barely seen, until it’s already made itself at home in your life.
However insensitive I was to the signs, I took notice when one day, after an ordinary afternoon of classes, I was too tired to walk across the campus lawn back to my car.
What would you do in such a situation? It certainly feels like an emergency, but you cannot call 911. You need help, but no one will understand.
I had no diagnosis yet to explain my symptoms. I had no idea what was happening to me.
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