Once on a trip to Vermont, my friend and I pulled off the road and into a rest stop. Rest stops in Vermont redefine that concept. I walked over to the map posted on the wall and there was a marker that carried a personal message. You Are Here!
The day wore on in silence and solitude. The only distractions were the images and ideas that played across my brain's white screen of blankness. I imagined a life where I was just as sick but one in which I belonged to a family. I dreamt I had two children. These fantasies and dreams were seemingly involuntary but were destructive nonetheless.
Thugs are worse than bullies - thugs insist on things going their way and you can't always stare them down or walk away. The other problem with the Thug in my life is that I never know when or how he will choose to show his power.
The strategies and techniques I've used to manage chronic disease have changed through the years. When fears begin to overwhelm me, I listen to those Suites transcribed for the Double Bass, recorded by the extraordinary artist Edgar Meyer. Dance, especially ballet, also transports me. . .
We are a good people, compassionate, often forgiving and embracing. Yet we are a country once turned upon itself, North against South. Somehow we came back together. The road back to a unified nation wasn't easy, and the remnants still linger, but the war did not result in two countries with border patrols.
I considered how ubiquitous our “satisfaction guaranteed” consumer culture was, and took it another step. Is that what we expect in life as well? Do we tend to equate contentment with boredom or psychological paralysis? I don’t know the answers to these questions but they plague me during the holiday season. This year was no exception.
I watched the silken grains of sand as they slipped from the top to the bottom of the cylindrical glass vials. Then I turned them over and began again. As I waited for the one-minute, three-minute, or hour of sand shift from top to bottom, it did not cross my mind the time it represented was lost forever.
Faces have preoccupied me for a specific reason -- steroid treatments for chronic illness. I have taken steroids from pre-adolescence. Steroids always alter the shape of your face. I wore dramatic hats with large brims during the worst years. Even if you're feeling your real face has been "lost" to steroids, celebrate your existence this holiday season.
Confronted recently by a sudden flare of disease, author Alida Brill was also faced with something else she had not expected. Read more about how to choose friendships that heal not wound. And reflections about why those with chronic conditions do not need to apologize or disappear.
I find it hard to let go of pieces of presumed wisdom I learned as a child, even if they're only phrases or adages. A friend of mine confesses he frequently hears his mother's admonitions--and she has been deceased for years.
Chronic disease is an intruder in many of our lives. I have had an inflammatory autoimmune disease since childhood. Sometimes people ask me how I've managed to live with it. But then, there are the other comments--the ones that press my impatience button: what I call The Toxic Ten!