Saturday, May 12, 2007







May 12th is CFIDS/ME Awareness Day & FM Awareness Day: if you've spent any amount of time here, I'd say you're at least semi-aware of what all those things are. If not, you can get some facts here - CFIDS Fact Sheet; FM Facts. Also, I may not have explained that CFIDS is called ME in many non-US parts of the world. It stands for Myalgic Encephalomyelitis, and you can read more about that here. (Also, there's some controversy about whether CFIDS and ME are the same thing, and about changing the name of CFIDS to something else, but I don't want to talk about that right now. I'm just putting it out there, in case you're interested.)


Last year's Awareness Day post had a lot of pictures - t-shirts (available at Cafepress.com) that said something significant about CFIDS or FM. This year's post has been harder to write: Coming so close on the heels of Blogging Against Disabilism Day, I don't want to repeat too much of what I've just said, but it's been difficult to figure out what exactly I [i]do[/i] want to say.

So here's what I think I'm going to do. I'm going to put a couple of quotes up, mine and others, and other than that, I'm going to devote this post to saying thanks.

Thanks for all the understanding, compassion, and welcoming I have felt here in this online world.
Thanks for taking the time to listen, to ask questions, to try to understand.
Thanks for sticking around through all the "flaring, flaring, God this is so boring, but I'm still flaring" posts.
Thanks for thinking twice about whatever preconceptions you may have had about CFIDS & Fibromyalgia, or people with disabilities.

Thanks for being so supportive & caring & thoughtful: Isolation is a very serious issue, particularly with diseases like mine, where I can go (and have gone) months without seeing anyone except my family and my doctor.

This blog, when I started it, was just a shot in the dark... the hope that there would be people out there who would hear me. I cannot fully express how grateful I am that I have found just that.

So... with all my heart... Thanks.

"But the illness that took over my life... actually erased some patients' fingerprints.... It sanded down the whorls of identity. It made us perfect thieves and perfect victims. Perfect to ignore, easy to blame. Digit by digit, person by person, the erasure deindividuated the very hands that symbolized our humanity, our vote in freedom. But the fingerprints hold a paradox. The smooth fingertips - they seem to tell so much. They seem to indicate, that nothing is there. But what is bes is what they cannot tell. They remind of of what has been taken away. ... CFIDS, an illness that seems - like a criminal suspect - to erase its own evidence." Peggy Munson, Person with CFIDS (PWC)

"This illness is not the result of some personal defect. I am certainly not enjoying myself here. I might be stuck in my house, but I will not be silent and I will not be ashamed and I will not be ignored. I will talk about why I am stuck here and keep talking until something gets me out. Jennifer Robinson, PWC

"Chronic illness means never being able to say, "This is for sure ..."-- Ricky Buchanan, PWC

"I am just drained. I am tired of having to fight every day, and tired of not knowing what to fight. Tired of trying to accomplish something, and having yet another day pass to find I’ve accomplished nothing more than making it through the day. Tired of having to justify my self, my thoughts, my actions, my non-actions, my illness, my good days, my bad days, my life. To anyone – including myself. I am just so weary of even having to think about myself and my health, and all of the things that are wrong with my body, my spirit, my life, and having no idea how to fix any of it. I am just so sick of having every little minute be full of pain and grief and anger and hurt and fear and exhaustion, that I don’t know how I’ll make it to the next minute. I am tired of wanting to cry. I am tired of crying. I am tired of being angry at myself for needing to cry, and just of everything. I just want a rest. A break. And I don’t know how to find it." NTE, PWC

"...love that word effortless ... I want to be effortless someday, do something, anything, effortlessly..." -- Jodi Bassett, PWC

“I remember the night I lay on my bed and weakly turned tear-filled eyes to my husband who lay beside me. “I’m going to die,” I said, “and they aren’t going to know what is wrong with me.” Eva Marie Everson, PWC

"A suspicious public, continually trying to prove myself, and inner battles with self-doubt: an exhausting mix, even for a healthy body! But that is not all... add the fact that the government - our government, the one we pay taxes to, the one that is to serve and protect us - is at best guilty of negliegence and at worst guilty of purposeful betrayal. They denied my illness existed for years and then, with chilling premeditation,
illegally misspent funds for medical research that could have helped to give me back my life - years ago. Years ago! ... Like the major struggle of my life was a nonissue." June Stein, PWC

"The thing I hate most about being sick is that it's like a roller coaster in the dark. Some days I will feel real good and think that everything isn't so bad, but then right after that something really bad will happen and I feel like maybe I'll never get well."-- Ross Moran (aged 14), PWC

"No Alcatraz is as inescapable as one’s own debilitated body.” Peggy Munson, PWC


“While I was lying there, I began to believe that we had struck the deer back in 1987, that he had come through the windshield and killed me, and that this was Hell.” Laura Hillenbrand, PWC

"Please be prepared to love and accept your child in whatever diminished state he is in, and try to give him reasons to love his life as it is now. This is not a disease you can push through, or conquer by sheer willpower, those things in fact make you worse. So please, don't push him to act well. Just love him and care for him, and be glad that he doesn't have something that will take him from you. Everyone should read this again, and think about each phrase. Then substitute the word another word for the word 'child'. Try 'wife', 'husband', 'SO', 'spouse', 'friend', 'lover', or whatever fits. How about adding 'yourself'. That is often the hardest."-- alt.meds.cfs

"I hate how people who knew us when we were well can't stand to be around us because it makes *them* feel vulnerable and mortal."-- Krasota, PWC

"There will be times when you want to scream and rant and tear your hair out at the unfairness of this damn disease, and there'll be moments where you'll see something beautiful in life and simply be glad to be alive." -- Margie Heinrich, PWC

2 comments:

Ruth said...

Thank you for all your participation online - in BADD and your support of others living with disabilities and illness. It's remarkable how much we can give to each other in this online world - what we can teach and how our words have an impact. It's crucial for all of us to remind each other that our " selves" our personhood are /is not diminished by physical and other limitations as some in society believe; that we are friends, mothers, daughters, sons, fathers, grandparents, aunts, uncles - and our value and worth as human beings should not and must not be measured on a scale that judges us by what we can not do and not by who we are - as human beings. I see courage in these quotes, resilience and strength. When will we learn as a society that a human being does not have to earn worth or produce to be equal? Human beings just have to be.

Ricky said...

I am glad that my quote spoke to you... but I wish that none of us ever had to feel like this!

*hugs* *hugs*
r
[Please excuse mistakes/brevity, typed via on-screen keyboard due to disability]