Finding Freedom In the Confinement of Chronic Fatigue Syndrome
When you have a lifelong illness which physically and mentally restricts you, your world tends to become very small, in every possible way that you can imagine. And for me, chronic fatigue syndrome shrank my world quite rapidly.
I could have perceived my surroundings and ailments as a lifelong jail sentence, hiding in a dark corner with a journal for the rest of my life, burning it as I go along for fear that somebody might find it. Instead, I chose to create something that someone would find.
I write with a comedic tone as I observe the little things in my life that make me laugh. I started a blog so I could hopefully make others laugh about little things and point to the ridiculous within the human experience. I do all of this from a very small physical space and try to be as entertaining as I can possibly be. It’s my way of finding my freedom within confinement.
The short film below, “DFK6498,” was made by Cameron Duncan. He was a young man who had cancer and he made this movie a couple of months before he died. He was the inspiration for “Into the West,” a song featured at the end of the movie the “Lord of the Rings: The Return of the King.” In addition to the jail metaphor, Duncan poignantly illustrated for the viewer his concept of freedom within confinement.
Freedom and confinement look different for all of us. In the short time I have been a blogger, I have seen remarkable examples of creative freedom from the chronically ill and from those who have been affected by a loved one who is seriously ill. Examples include people who write books, other bloggers, sketch artists, painters, photographers, tattooists, clothing designers, vloggers, makeup artists, songbirds, composers, and more.
I often think to myself, “What kind of person would I be now had I never been ill? Would I be as creative? As funny? As empathetic and caring?”
“To suffer binds you to something higher than yourself
Higher than your own will
Takes you from the world to find what lies beyond it
We are not only to endure patiently the troubles we are sent,
We are to regard them as gifts.
As gifts more precious
Than the happiness we wish for ourselves.”— from the movie “Knight of Cups”
It is my assertion that those of us who are confined physically and/or mentally have the unique capacity to creatively interpret the world in a way that those with complete freedom are unable to. The way we express those interpretations can be and are precious gifts to others.
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I am what I call a “professional pillow presser.” I have no diagnosis other than “chronically fatigued.” I am a writer and a blogger who has not yet learned to adult. I bring with me insane humor and storytelling into the lives of people with chronic illness, specifically those who have not received a diagnosis.
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