This was my opening blog post from February 12, 2012. I thought it might be helpful to keep it as a permanent page.
“I came because by being physically present at Occupy Wall Street, I could increase, however marginally, the likelihood that more people would look in my direction.” – Jason Fitzgerald
If you paid any attention to the news in the last quarter of 2011, you know about the Occupy movement. Occupy Wall Street. Occupy Oakland. Occupy Philly. The verb “occupy” has been plastered on everything from headlines to posters to funny t-shirts. The movement continues to evolve, but Occupy has your attention and you know what it is. Occupy is a brand.
I am part of the 99% but I do not agree with all of the aims and tactics of the Occupy Wall Street movement. I am not an anarchist. I do not believe that horizontal decision-making is an effective structure for society. I do not think that capitalism must be eliminated in order to achieve economic justice. So why am I appropriating Occupy for this blog when I am not part of the movement itself? And why am I applying the word “occupy” to CFS?
The word “occupy” has many meanings, and in its weakest sense it means “to be situated in.” I have occupied CFS for more than 17 years, residing within the confinements of space, time, and function imposed upon me by the illness since October 6, 1994. I am situated within a world created and perpetuated by CFS, and so I occupy this space in the weakest definition of that word.
Occupy also means, “To employ, busy, engage (a person or the mind, attention, etc.)” Obviously, CFS engages my attention because I have to live with it every minute of every day. But I want CFS to engage your mind, too. I am starting this blog, and speaking out with my real name, because I am weary of the shadows. CFS is called an “invisible” illness, and out of sight is out of mind. Some patients are reluctant, for a multitude of reasons, to admit to having CFS or to sign their names to what they say online. No more. Not me. I will speak honestly about my CFS experience – the politics, the medicine, the research, the suffering, and the lessons. I am doing this to engage your attention, to occupy your mind.
The primary definition of the word occupy in the Oxford English Dictionary is: “To take possession of, take for one’s own use, seize,” and that is my mission. CFS took possession of my body on October 6, 1994. But now, I am taking CFS for my own use. I am seizing this illness by the throat and shaking secrets out of its pockets like pennies falling on a sidewalk. I will share those secrets with you here, and I invite you to Occupy CFS with me by sharing your perspective and experience.
Some will wonder why I would spend energy to write a blog, especially when my energy is so limited. To paraphrase the opening quote from Jason Fitzgerald, I am here in the hope that I can increase, however marginally, the likelihood that more people will look in the direction of CFS.