Friday, October 20, 2006


This post is for me: it's all the wallowing I am allowing myself for this, my 12-year Sick-a-versary. This year, I’ve decided that the only wallowing I can allow is in writing.

So I’ve gone back over all the stuff I’ve written, or read, about being sick over the past 12 years. It’s a lot of stuff, I’ll tell you. Mounds. So, in “honor” of my 12th sickaversary, I’m going to give you some snippets, little glimpses into my life, and what it’s been like during this long, hard, battle. Mostly so people won’t be worried about me, I’ll warn you that these aren’t always easy to read (even for me), and that I don’t necessarily still feel the same way about certain things as I did when I wrote them. But they were how I was feeling at that particular moment in time, and some of these things I haven’t even shared with those closest to me. (Gotta love the anonymity of the blogosphere for spilling-your-guts purposes.)

Today is my 12th sick-aversary

It is 12 years, exactly, since I was well.

On the 20th of October, 1994, I was decorating the homecoming float with my friends, then I taught my dance class (5 yr-olds) and got them ready for a halloween party.

On the 21st, I was so sick that, when I fell out of bed, I could neither call for help or get up on my own. I couldn't even roll over.

Over the course of 12 years, I have had a lot to say on this subject, and so have many others. So here it is:

I can’t express my pain in a way that seems reasonable. If I say it is screaming, that doesn’t seem loud enough. If I say it is nagging, that doesn’t seem overwhelming enough. If I say it is constant, that makes it seem as if I could get used to it (and, sadly, at some point you do). Ache isn’t a big enough word; pain isn’t easily definable. I can’t explain the depth of this pain: how it swallows everything else. Everything I know about myself, everything I know about the world, and everything I think to be true. It becomes all I know, all I can feel, all I can ever remember feeling.” October 2004

“People talk about their chronic pain as if ratting on the other partner in an unhappy, toxic marriage. They fall out with their pain, they have screaming fights with it, they make up again. Or they try to run away with some attractive little analgesic. But pain has their cell-phone number and won’t let them escape. Living with chronic pain can be a grinding form of intimacy.” (Marni Jackson, Pain: the 5th Vital Sign, 2002, p 95)

“My body has become this traitor, this thing I can’t even recognize. I hate it… and it is me… what does that say? How does a person live in a body that they don’t understand and hate so much?” 10-3-04

“My tests were all negative; nothing could explain my illness except chronic fatigue syndrome. I called my parents. “I have good news and I have bad news,” I said. “And it’s the same news.” (Anne Ursu: You’ve Never been tired like this: Glamour Magazine, June 2005)

“I have had people – close to me and close enough – tell me that I am lazy, weak, depressed, not trying. I have been told more than once to “just start moving” or to “just keep it up till I feel better.” On my worst emotional days, I feel the guilt of being unable to do so, the fear that I am not really trying, the shame that I just keep failing.” 1/14/05

“There’s so much suffering, and so much of it is emotional and mental. You feel incredible guilt, you feel like you are the only one who has this. It’s the opposite of hysteria, which is supposedly caused by all the openness, all the media attention that makes everybody believe they have these things. This is the opposite, where you believe you came up with this on your own, you invented it. These drugs should be working, so you’re unresponsive. The alternative medicine should be working, so you’re not thinking positively enough or working hard enough.” (Paula Kamen, Head Case,, 10/05)

“I have thought about dying more than once – in a nonchalant sort of way that is terrifying. “If that bus hits me, I won’t really mind. At least it wouldn’t be this.” At my worst, my most painful, I prayed that a bus would drive through my room: jump the curb, onto the sidewalk, through the yard, crash straight through the wall into my bed. No one else is hurt, and I am hurt no more.” Sept 27, 2004

It was the easy way out. No more trying to keep pace with others. No more pretending everything is ok. No more mind over matter. No more irrational fears. Better yet, no more rational ones. … After thinking through all my options for the past few weeks, I had come to the conclusion that I would not take the easy way out. … Dying sound fine, just for a little while at least, to get some relief – but suicide was too drastic. After all, the desire for self-destruction and the desire of wanting pain to end can be two different things.” (Paula Kamen, All in My Head; p257-260)

“In my fervor to not make my illness the center of everyone’s lives, it has erased it from them completely. Oh, they know that I am sore. They know that I am tired. But they don’t know what it is like to be me… what every day is like. What every failure is like. What every minute of waiting does to a person. Oh, every now and then they will ask, they will say “so, what’s new?” But really, all they want to know is that I am still trying, that I haven’t given up. That they won’t have to deal with me, like this, forever. They ask only because they are supposed to: and this is partly my fault, for having no progress to report is both daunting and discouraging and there are only so many times you want to give the same bad news.” February 2006

“I know what it is to be ill in the bosom of your family… Unless you want to behave like an abominable egotist, you have to avoid giving expression to your pain so as not to upset those around you. ….Our pain is always new to us, but becomes quite familiar to those around us. It soon wears out its welcome, even for those who love us the most. Compassion loses its edge.” (P76, Daudet, In the Land of Pain)

“Anybody who’s ever really been sick knows that the tolerance level for illness is low. Once the get-well roses begin to wilt, everything changes. Compassion and caretaking turn into burdens and vulnerability becomes weakness.” (Writing the Wrongs of Identity, Meri Nana-Ama Danquah; p176)

“I’m sick of reading about dying, injured, paralyzed, horribly ill people and hearing “And s/he never complained. Not once.” Or “she died with a smile on her face.” What kind of crap is this? What kind of people are these people?
How can anyone (Not just a sick person, but any person), live a life and not complain?

Are there actually people who never feel tired, or sad, or just plain, done? I don’t know those people. And I don’t think I want to know them. And I damn sure ain’t one of them.
Being me is HARD: Living is HARD. Living with a chronic illness that no one understands, no one cares enough about to research; no one wonders what it’s like to live like this, to be like this, to have all this pain all the time, this brain that doesn’t function, this body that argues with you over every little thing. How do you never have a complaint?
Real life is messy. It’s painful and complicated and confusing and frustrating and scary (and joyous and wonderful and sometimes almost perfect) and to keep all of that inside of you would only make it more so.
If I couldn’t write.
If Mom didn’t listen to me vent.
If Shannon wasn’t still an ear I can pour my soul directly into.
If all of these outlets were missing, I would be missing. I can promise you that.
If I had tried to make it through the past 10 years without complaining, all alone with my worries and concerns and upsets, then I wouldn’t have made it.
And there should be no need to keep it all to myself.
People who are sick shouldn’t feel compelled to think they’ve got to hide all their weak spots just because they’re sick.”

“Today, when alternative therapies are available in every mall in the country, the ill person is blamed not only for getting ill, but if the therapies fail, he is also blamed for not getting better (“he gave up too soon,” “he didn’t want to get well”).” (Susan Greehalgh, Under the Medical Gaze; 2001; p49)

“What kind of person wishes they were in a coma? Wakes up from a dream that they were in a coma and is actively disappointed? What does that say about where I am, who I am? I’ll tell you what I think: I think about how a coma, in the way TV or books portrays it, is a chance for your body to recuperate. A chance for your body to go back on its reserves and heal whatever is bothering it. To revive from something that you can’t deal with in any other way. So to dream about that chance – to sleep away all the time it’s taking for me to heal, all these false starts and relapses and horribly long periods of nothingness, of waiting. Well, that seems reasonable to me. Seems right. I wish that I could just sleep through it all, that one day, I’d just wake up, refreshed & feeling alive. Envying a coma… what kind of position is that to be in?” 1999

“The prisoner imagines freedom to be more wonderful than it is. The patient imagines good health to be a source of ineffable pleasure – which it isn’t. All that we lack is a sense of the divine.” (Daudet, In the land of Pain , p44)

“I am sick of playing guinea pig, but really, what other choices do I have? To ‘live’ like this forever? I don’t think so. But the more things I try that don’t work, the harder it is to believe that there is something out there that does… that will.”

“Until then, I’m tired. Exhausted. No reserves, no power left: plug me back in/charge my batteries tired. Not just physically, but mentally too. Tired of having to make do. Tired of waiting around. Tired of trying my hardest, putting all my effort into my every day and having no one see it. Tired of seeing the same four walls; hearing the same six songs; talking to the same five people. I’m tired of feeling sorry for myself. Tired of searching for answers that seem impossibly hidden, maybe even lost forever.”

“People who think dying is the worst thing, don’t know a thing about life.” Sue Kidd, Secret Life of Bees, p2)

I just want it all to stop. I just want to be NORMAL. Just want to be able to live and feel and think about ordinary things. To not worry about tallying up today’s allotment of pain, or tomorrow’s allotment of pain pills. Or tallying today’s energy while worrying about the lack of stores left for tomorrow. It isn’t fair, and I hate it. I hate sitting here typing all this, feeling like the biggest whiner. Like someone who just can’t “get over it” already. But I’m not over it. I don’t know how to be over it. I don’t know how to get past this, if my body won’t let me.
I’m tired of having to decide. What’s right and what’s wrong. For myself, for my body. Which doctor to listen to, which ones to ignore. Which pills to try, which ones to stop taking. Which therapies are worth the time and effort and energy, and which ones aren’t. I just don’t know. And I don’t want to have to decide anymore.
I’m tired of having to suck it up. Of having to not cry. Of pretending that I am happy with my life the way it has turned out to be. Of not having the control I should have over my life. I’m tired of having to make nice to people just because I have no other place to go. I’m tired of biting my tongue about important things because I can’t make anybody mad, because I need them to help me. I’m just tired of it all. I’m so damn frustrated and angry and sick to death of the whole thing. It makes me want to cry. It makes me want to throw up. It makes me want to break something into a hundred tiny little pieces.”
October 3, 2004

“When the shrink talked about how the disease would affect my personality, I talked about how my personality would affect the disease. I didn’t understand why nobody… I kept thinking, ‘I am me! I am still me!’” (Elizabeth Berg, We are all Welcome Here, p97, 2006)

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That's it: The end of Wallow-Fest 2006.

We now return to our regularly scheduled programming.


Maya's Granny said...

I am nowhere near your level of pain nor length of problem, so I only understand a little bit. I am in my third year of not enough sleep and constant back pain and not enough energy. I hate it. I hate throwing away vegies that went bad because I didn't have the energy to cook dinner and ate toast with cheese one more time. I'm tired of piles of things on tables that I haven't the energy to sort out and put away. I'm tired of depending on others to do things I can't do for myself, and so even though I am paying them, feeling beholden and not wanting to complain when they don't get around to ironing the outfit I want to wear.

It has to be so much worse for you. Know that you are in my thoughts and heart.

Never That Easy said...

Maya's Granny -

Thanks so much for thinking of me: I hate knowing that you're suffering too. Where's a magic wand when you need it?

Anonymous said...

I found your blog because I got deoderant in my eye this evening. But I read further to find that you are suffering greatly. I cannot say I understand the agony you are in, but I pray you have a hope for the future to hold onto. If no one else wants to listen to you, you can contact me. I will pray that you can find answers and healing from this disease. I have a friend who thinks she has it.