Sunday, March 19, 2006

The Dying Days

Healer of my soul
Heal me at even
Heal me at morning
Heal me at noon
Healer of my soul

Keeper of my soul
On rough course faring
Help and safeguard my means this night
Keeper of my soul
(John Michael Talbot)

There was an episode of the X-Files -- one of the later ones -- where the villain was this guy who would kill his victim by sucking the life out of them. He'd open his mouth and you could see this gaseous form, the person's spirit I presume, slowly come out through of the mouth of the victim and then suddenly they'd collapse dead.

That's what having CFIDS is like.

Yeah, I never die, though there are days when it feels like I will -- the Dying Days. Like someone is sucking the life out of me just like that guy from the X-Files. Like someone missed something somewhere and now I'm going to slip away.

It has happened. Casey Fero of Wisconsin, who had been diagnosed with CFIDS, died in his sleep last summer. The autopsy showed that he died of heart failure from a long-standing infection of unknown etiology. When I take into account that the high blood-pressure problem I started having last spring disappeared once I started taking doxycycline (an antibiotic), there are moments when I'm good and truly afraid.

The last few days have been the Dying Days. I tell myself I'm being incredibly hypochondriacal, which is the last thing I should be with an illness like this. But what if my fear of seeming hypochondriachal is keeping me from expressing to the doctor just how seriously ill I am?

Nightime feels particularly frightening. Normally when I have the Dying Days, I tell myself that yeah, I've felt it before. And I woke up the next morning. And I'll wake up tomorrow morning. And then I go to sleep. But every since this last fall after the experience with the doxycycline and the story about Casey, that no longer works to allay my fears.

Last night I found myself afraid to close my eyes. Insisting that nothing is going to suck my spirit out of me. Thinking of that old prayer: now I lay me down to sleep, I pray the Lord my soul to keep. And if I die before I wake, I pray the Lord my soul to take. Then I thought about a lot of the Orthodox morning prayers from St. Basil and other early Church Fathers in which there is some sort of thanksgiving for living through the night. Superstition may have played a part in that, but I think it also reflects what living was like before EKGs and MRIs and sophisticated lab tests. You never really knew if you had something that might kill you.

Again, sorta what it's like having CFIDS.

There are no blood tests to tell you if you have it or not. There's not a machine they can hook you up to that says there's something wrong with your heart (or is there?) or your brain (well, fMRIs do show that we process pain differently). We just have all these little signs here and there saying something is not quite right. And, of course, living on the inside of it you sure as hell know something is wrong.

I find that all I can do is simply acknowledge that I have no control over this situation. That worrying will not change whether I'm dying or not. I simply surrender my need to know. Focus on each moment I have right now, though at times even that is frustrating because, well, it's hard to live life to the fullest when you're laying flat in bed. But then, usually the assumption there is in doing stuff and while I suppose I need to work on the being -- whatever that may mean.

And maybe I should make sure my mom has A.'s email and phone number in the U.K.