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.


Anonymous said...

Hmm, I guess it's not just me. It's hard to know how many symptoms from the laundry list I should tell my doctor about. You just don't know what might be "important" and what might be "complaining." We wouldn't want to be labelled as a "frequent attender" would we?

And I've thought more than once about making up a file with all the things my dad would need to know to tidy up my earthly affairs.

I actually had a wonderful dream once where I died and realized that we don't vanish, we continue to exist. By all accounts (psychics and whatnot) it is much better on the other side (provided one has the right disposition and few expectations). Obviously, though, getting there can be traumatic to our animal selves, whose prime directive is physical survival. It's fitting that the almost last words of the Liturgy of the Hours every night is "God grant us a restful night and a peaceful death."

Today (in the Roman rite) is the Feast of St. Joseph, who is, among other things, the Patron of Peaceful Death. Bit of a coincidence, eh? ;)

Susan Rose Francois, CSJP said...

Prayers across the river are coming to you this morning, Michelle.

Let me know if you're up to our visit tomorrow.

Take care.

Serenity Everton said...


I wish I could do something to help you!

I've always been uncomfortable with the prayer you quoted where we pray about dying in our sleep with our children. I didn't even like to say it as a child. We say this version of that prayer at nighttime with our little girl:

Now I lay me down to sleep, I pray the Lord my soul to keep. May angels watch me through the night, and keep me in their blessed sight.

I've also seen it ending with:

May angels watch me through the night and hold me close all through the night.



Michelle said...

So hear ya, Sylvia. I remember my therapist once asking if I had mentioned some fairly benign symptom to my doctor and I was like, "are you kidding? I just focus on the top 3 or 4 most debilitating!"

However, I do have an appointment with the doctor next week and that little issue with my blood pressure going down when I started taking antibiotics is going to be on the list. ;)

Yeah, as I thought about dying more, I realized that I wasn't so much afraid of the dying itself. There's the fear of the sadness of those I'd leave behind, but even more so I was afraid of what I haven't done in my life. And then realized that really reflected my need for approval based on what I've accomplished -- which is crap, of course. But it's a very hard thought pattern to let go of. However, if I ever do get better, I think it will be in large part to surrenduring that equating accomplishment with love.

Michelle said...

Thanks, Susan! It was so great to meet and chat. Hope we get to do that more before you head off to NJ in September. :)

Michelle said...

Yeah, sparkle, it can be a pretty frightening prayer. I like you're version. I know I've been praying to my guardian angel at night. I've also been thinking of this song by Bob Bennet, a Contemporary Christian Music artist, called "Angels Around Your Bed" which sort of reminds me of A. a bit.

Many blessings to you also!!

Sue Jackson said...

Hi, Michelle -

I came across your blog today, just surfing through blogs of other people with CFIDS. My 11-year old son and I have it, too, and your description of Dying Days really touched me. We are very fortunate not to have too many days that are quite that bad, and I hope you get through this rough spot quickly. Thanks for writing; I'll be back!


Michelle said...

Thanks, Sue! I'm glad it resonated with you. And thanks for your kind wishes.

Elizabet said...

Just now read this post with increasing interest!
Can't imagine what you are going through but hope this next bit helps a little-
I had an operaton about 5 years ago that was serious. Most operations are I suppose, but this was to remove my womb, and some nasty growths- anyway after the operation the attending doctors had trouble making me breath after the anaesthetic- i saw everything they did and could actually hear them calling to me- i was stood outside of my body at the bottom of the trolley watching everythng that happened- this went on for about 10 minutes ( I later found out)but my point is that I have never felt to warm, so secure as I felt during that time. I was dead for a while but the feelings that engulfed me during that time are so wonderful that I cannot even attempt to describe them. Obviously I reluctantly did breath but was really annoyed that I had to!
Having written this I feel really stupid now but hope it helps anyway!

Michelle said...

Oh, don't feel stupid at all! I'm really glad you felt comfortable sharing that experience with me.

As I mentioned in my response to Sylvia's comment above, I think my fear of dying is more related to what I think I should have accomplished in my life rather than what may or may not await on the other side. More a sense that I'm not ready to go because there is so much I want and should do. Which really reflects a certain level of hubris on my part that I need to let go of.

Again, thanks for stopping by and sharing!

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