A lot of questions; answers completely optional

I have heard it in a dozen different ways but it all boils down to “What did you do?”, “Why are you sick?”, “When are you going to get better?” and most important “What are going to do about ‘it’?” (It being the aspect of being ill that, if I could figure out, would somehow be in my control).

There is this slippery line between illness and disability; which also seems to occur between personal responsibility and adapting. No matter what people say, no one, including me, can accept that things “just happen.” Most of our religion, our society, our interactions and the way we can tell good people from bad people is based on what happens to people, how they act and how much they are AT FAULT.

So what did happen to me? I get asked it almost every time I leave the house. To ask, “What happened?” means that something did happen, that something perhaps is still happening. You can’t say, “I got the flu” without three people telling you a) you should have gotten a flu shot, b) they never get sick and c) most people don’t wash their hands as much as they should. A few days ago I asked a home care worker about her union and pointed out that she should be covered for a disability pension. She replied, “I don’t care about that, why would I?” Then realizing that she was the same age as me said, “Well, I’m sure you didn’t care about it before.”

No, I didn’t. I thought I had 30-35 years of teaching university and doing research. Ten years to pay off any debts and save enough for a condo then a nice life of travel and saving. I spent my life “investing in my future” as we are told only the wisest of us will do; I spent my time and money investing in getting credentials and training that no one currently cares about. They don’t care because it is in THIS body, and while Stephen Hawking may have a university research position, I don’t know exactly how he made the short list to the interview (I can’t with the ones I apply to); he certainly didn’t have a good CV/Resume.

And how am I “fighting” for my health? We in the west think that with enough money and philosophies to rip off, there is an instant answer to everything. That cancer responds to negative thoughts; that if I’m not centered or have a list or a plan then I’m not “fighting.” What’s to fight? As egocentric as I am/was, I never thought my heart beat because I ordered it; and now that the part of my brain that gives it orders seems to be shorting out, what am I supposed to do? Yell at it?

I am coming up on my 11th straight month of deterioration. And I have a sort of stability; or rather the ordinary is creeping back in to steal time away; dental problems, computer problems, family stuff. And while it leaves me limp like seaweed after high tide, since no one sees me, what does it matter?

How can I be insulted much by people who question if there is something I have done or some reason I am sick when I question it myself? I’m not disabled as much as broken or breaking. And I’m sure that if anyone deserves what is happening to me, it IS me. I certainly never treated my body the respect it deserved; I was anorexic, self harming, and generally used my body like a disposable toy. Well, when I labor to expand my lungs, or listen as my heart struggles erratically on; it certainly has a lot more of my attention now. I’m not a saint; I don’t think I’ve done anything particularly horrid, I try to live by a set of rules that respect all humans and their right to make personal decisions. But then again, this condition isn’t something I would want anyone else to have to experience. So I guess if I had to choose between me and someone else, it might as well be me.

My home care professionals, health professionals, doctors and people in health care tell me, when they are scared, that they don’t see conditions like this, not all in one person, sometimes not at all; it is just something they’ve read about in a book. Things that might happen someplace far away, like children starving in Africa.

Do I think I have offended God? Well, the thought crossed my mind but the real reason I stay away from Christians is that I honestly think God likes me; that I’m sort of a favorite. I mean, if the bible is your anecdotal evidence, painful, unexplainable conditions, which slowly waste away a person’s strength, dignity and hope are how you tell God has taken a personal interest in you.

No matter how much I do, or how much it hurts, I think (those times I am not hallucinating in pain) that I should have done more; that I need to do more. It’s odd being backlogged with your own illness. If I could just get a remission, a stabilizing, then maybe I could make sense of something, anything. I know that even this mental state, after days and days of extreme pain and fatigue is something others have gone through. I wonder where they are? Aren’t they supposed to be here selling me a book on the 10 things I have to repeat to myself in the mirror to cure myself?

I don’t know what to do now. I’d like to be able to go outside again. I’d like to be strong enough to shower again. I’d like to know what I am supposed to be doing or thinking? What I do think about is having margarita’s with friends; talking, laughing, not worrying about my oxygen levels or my core temp. Hell, I’d like to have friends who would go out to margarita’s with me, since I can’t get any of the home care workers to commit.

There is some sort of belief between the cracks that I should have a life that is MEANINGFUL. That I still have choices, and I know very well that soon, maybe within months or a year or two I will have almost no choices at all. So what choices do I make; what narrow path out there will give me peace or joy or some sort of emotional or physical solution?

Last night, pulled to the floor, on oxygen, I couldn’t expand one of my lungs. To describe the pain, all I can say is that I would have willingly….eagerly cut into the spaces between my ribs with a scalpel if I thought I could have, not ended, but just eased that pain. But I couldn’t cut anything because I couldn’t move; barely conscious, paralyzed, with part of one hand to make tapping and signs. Later, when I was conscious and had control over one hand and arm, I wrote for the carer: ‘The pain?’ She nodded that she understood what pain I was talking about. ‘My future?’ Was this going to be my life in six months, or nine or eighteen? She didn’t know but she didn’t think so.

It isn’t just a question of suicide or thinking morbidly or the worst. You simply can’t experience pain like that and not NEED to know if that is what you are going to be facing more and more often.

Of course there is the post dissection. Did I try to move too much that day? The previous day? Did I stay up too late? Did I not go on oxygen soon enough? Did I talk too much? How, the question begs, did I bring this upon myself?

Certain illnesses don’t make very good storytelling. There is no build-up to a climax, there is no resolution, indeed, it is hard to tell when and where in the plot you are at all or even who the good people and the bad people are. Is it a horror story or a fairy tale? An adventure story? What is the theme? I think in the US and Canada the theme is “Don’t get sick.” I’m just not sure how I go about doing that, right here, right now. Some weird spammer guy keeps sending me long rants which start with “You may have been evil/preditory in your last life and this disability is how they are punishing you.” Well, at least now I know right? (hooray for comment moderation!)