Why Occupy?
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.
Many people do not know that I have CFS/ME. I don’t tell them because they would doubt me – especially having known my previously strong and healthy former-self. I cannot be bothered to spend vital energy explaining my illness to the doubters; therefore I don’t tell them about my illness. I just suffer in silence behind closed doors. I wish I were as brave as you, I really do x
It seems to me being an articulate, thoughtful woman who has this disorder like you, we’re often suspect because of our very ability to describe the thing that no one else can see. After all, some must wonder, how can an illness that allegedly limits the brain and body leave its victims with the power to identify it? I get the feeling from some people who don’t have CFS that my very commentary and explanation is proof I have the strength to slay the invisible opponent within. CFS is so baffling the only people who understand it either have it or work with patients who do have it (such as those in the medical field).
I tell people I have it freely because it’s part of my reality. If they can grasp it, great. If not, too bad for them. I understand dealing with skeptics is tiring, so I invest little effort if I read in their faces anything other than compassion. In a sense, CFS helps you discover who your true friends are.
I stumbled across this blog and am very happy I did. August will mark 4 years of being significantly ill with CFS. I can look back to a few years before and the tiny beginning of things to come. I too share openly about my illness. I need the few people in my life to understand. This illness is socially isolating enough as it is, I don’t want to drive people away who think I just can’t be bothered to take a phone call or have a visit. I share links and some of my own personal thoughts and feelings with my people (for lack of another word, you know how it can be
). I find facebook has been an invaluable way for me to stay connected when I need to stay home and keep things quiet. I’ve been pleasantly surprised by people. Not many have run in the other direction.
I firmly believe that knowledge is power and that having a voice makes me stronger. So the more I know about my illness and how it affects others makes it less scary, gives me the upper hand. Being able to talk about it freely, makes me stand up straighter. I have no secrets and certainly nothing to be ashamed about.
Welcome, Angie! I hope you will share your experiences here.
I’ve had CFS since 1995 with a wonderful – what I thought was healing – reprieve for about 7 years. I started getting sick again late ’09, gave myself a concussion in March 2010 and haven’t been well since. I also started a blog. For me it is solely to keep my sanity and to let others that come across it know that there are “normal” terrible feelings about being sick.
I cannot write or communicate as well as you all can as my brain is seriously suffering with the rest of me this time around. However, I am totally able to comprehend your encouragement and courage. (And some days I am back to being smart!)
I tell some people about my illness especially if I find myself unable to express myself clearly. I have isolated myself as well and can tell when my friends are sick of hearing about it.
I find myself excited to read more on your occupy site and again – thank you.
Thank YOU!
My beginning was 2005. My discovery of CFS 2010, all by self investigation from information on the web. Expect I have had a very similar path with medical providers, actually more of a roadblock to relief, support and true understanding. But just today I found comments on this site that have me screaming inside FINALLY!!! Others who live in my world (I send you all my support and care…You can’t get too much). I had to send this immediately to introduce myself and say I am so excited to share knowledge and helpful suggestions. I will add, I am currently 4 weeks from having my left kidney removed due to cancer, so no need to tell all of you I am just recovering from the flare of that…..wow. I am 62 year old formerly extremely active, employed, crazy busy lady, probably also a familiar description. Anxious to share…will be reading all I can here now! My best to you all, and lots of respect for all you endure!
Connie