Invisible
If I am sitting when you meet me, you may not see it. Walking into my second story apartment you will be simultaneously overwhelmed by the brightly colored paintings, books, music & movies, all drowned out by my loud and infectious laugh. I exude vitality and as you make your way through there are framed photographs from the mountains I have climbed, oceans I have dived, deserts I have hiked and endless churches and museums that I have visited.
After a few minutes you might notice that my breathing has become more labored, the sweat is pooling on my brow and my alert posture has started to slump into the couch. I am no long what I used to be and can no longer maintain the vivid presence I used to constantly inhabit. I cannot walk, stand or sit straight for more than ten minutes before I begin to collapse. Or when I do it is despite the pain that is coming on and that will stay with me for days, or sometimes weeks.
You might be embarrassed as we are both confronted by my frailty, so at odds with the large frame that once was legendary for its strength and endurance. As you search for another place to look you might at last take in my shiny red cane, the breathing machine, the regiment of pill bottles and the overflowing folder of medical bills and benefit explanations that are waiting to be filed.
I was an artist, a musician, an actress, a dancer, an academic, an administrator, a muscular therapist, and an unignorable force of nature. With all of these gifts and experiences, when asked my profession now, all I can say is 'disabled.' It's not a question of what I can or cannot do, but of what it takes for me to do it. I have the use of all of my limbs and senses, but now that I have chronic fatigue syndrome and fibromyalgia any focused use of one or more of my faculties causes me fatigue and pain that is by many accounts comparable to what one experiences with cancer.
My cells don't make enough energy and my neurons communicate too much pain. We don't know how these illnesses happen and so we who suffer with them are not given the respectable status of a chronic disease. We have syndromes, a constellation of symptoms and conditions that may last for months, if you're lucky, or decades, if you're not. There is no test that will tell us how likely we are to improve or how likely we are to get sick again if we do. So we have to live our lives balanced between a grim acceptance that we may need to plan never to work again and an impossible optimism that today will be a good day.
There is no pride in chronic fatigue, because you quickly learn what overextending yourself will cost. I am currently in a two week flare up of shooting pain in my lower back, hips and legs and aching in all of my joints, staying in bed all day and running a constant low-grade fever. These two weeks of heightened illness and misery were caused by standing for 15 minutes, w/ my cane, when there were no more chairs left, sitting for an hour and walking up and down one flight of stairs.
Harder still than the ongoing failures of my form to function is the sluggish weight through which my mind now operates. Once used to reading dozens of books per year, most days I cannot maintain focus enough to read One full article. And if you find some eloquence in these words that you think belies the gravity of my condition. This post was for Invisible Illness Week, September 14th-20th, 2009.
After a few minutes you might notice that my breathing has become more labored, the sweat is pooling on my brow and my alert posture has started to slump into the couch. I am no long what I used to be and can no longer maintain the vivid presence I used to constantly inhabit. I cannot walk, stand or sit straight for more than ten minutes before I begin to collapse. Or when I do it is despite the pain that is coming on and that will stay with me for days, or sometimes weeks.
You might be embarrassed as we are both confronted by my frailty, so at odds with the large frame that once was legendary for its strength and endurance. As you search for another place to look you might at last take in my shiny red cane, the breathing machine, the regiment of pill bottles and the overflowing folder of medical bills and benefit explanations that are waiting to be filed.
I was an artist, a musician, an actress, a dancer, an academic, an administrator, a muscular therapist, and an unignorable force of nature. With all of these gifts and experiences, when asked my profession now, all I can say is 'disabled.' It's not a question of what I can or cannot do, but of what it takes for me to do it. I have the use of all of my limbs and senses, but now that I have chronic fatigue syndrome and fibromyalgia any focused use of one or more of my faculties causes me fatigue and pain that is by many accounts comparable to what one experiences with cancer.
My cells don't make enough energy and my neurons communicate too much pain. We don't know how these illnesses happen and so we who suffer with them are not given the respectable status of a chronic disease. We have syndromes, a constellation of symptoms and conditions that may last for months, if you're lucky, or decades, if you're not. There is no test that will tell us how likely we are to improve or how likely we are to get sick again if we do. So we have to live our lives balanced between a grim acceptance that we may need to plan never to work again and an impossible optimism that today will be a good day.
There is no pride in chronic fatigue, because you quickly learn what overextending yourself will cost. I am currently in a two week flare up of shooting pain in my lower back, hips and legs and aching in all of my joints, staying in bed all day and running a constant low-grade fever. These two weeks of heightened illness and misery were caused by standing for 15 minutes, w/ my cane, when there were no more chairs left, sitting for an hour and walking up and down one flight of stairs.
Harder still than the ongoing failures of my form to function is the sluggish weight through which my mind now operates. Once used to reading dozens of books per year, most days I cannot maintain focus enough to read One full article. And if you find some eloquence in these words that you think belies the gravity of my condition. This post was for Invisible Illness Week, September 14th-20th, 2009.