Sunday, March 29, 2009

And Now, the Present

Note: This fifth installment in the story of my illness breaks the chronological narrative to give a glimpse of the present. Links to the previous posts can be found in the sidebar.

I am lying in bed. The late afternoon pours in the window to my left. Pulling shades during the day seems, somehow, a bad thing to do. Even if I must cover my eyes with a sock or shirt sleeve to make an illusion of dark close around my face, I like to know light still fills the room.

Thus and so. Assorted odd habits prop up my confined life. At night, I sleep with my head at the head of the bed and my feet at the foot of the bed. Come day, I lie with my head at the foot of the bed and my feet at the head of the bed. Voila! The one bed is two places and I half as confined.

I am doing today what I used to do every day—lying in bed mostly, watching the sensations in my body. Yesterday I spent about an hour and a half on the computer. Half-hour intervals with rest between. I had some hand pain at the end of the day, really not bad. I felt decent. But I woke in the night, the flesh of my shoulders and arms smarting and stinging.

Nurses ask me to rate my pain on a scale of 1 to 10, then receive with surprise the low numbers I give. I try to explain. I know how bad pain can be. It is an act of obeisance, of respect, of holy fear. I have not forgotten. I must save some numbers; I might need them.

I would rather not play this game at all, but I do. I say, “Today my pain is a 3,” and they say, “Oh, that’s not so bad.” The one-dimensional question yields a one-dimensional answer which yields a global conclusion. In a way it isn’t, often, so bad—in that one dimension. I can often keep my pain level down. At a cost. That is another dimension.

If training for a marathon gives you #7 pain—well, you may have to give up marathons to bring the pain down to 3. That is the cost. If most minor functional activities give #7 pain—well, you may have to spend your days doing nothing. Number 3 pain bought at the cost of marathons. Number 3 pain bought at the cost of most activity. Pay up! A second dimension.

Days like today have become less common. But I’ve lately been feeling on the verge of a major setback. Pain comes more easily, leaves less easily. Some days, like today, I revert to older limits. Larry, could you move that pillow for me? Larry, could you put these pill bottles in the cabinet?

The pain today feels emphatic, a warning. So I’ve been lying here in bed—thinking. Mostly about a question from a friend who recently read my blog. When he knew me at seventeen I ran and swam, windsurfed and danced. Yet I describe myself as having been sick since childhood? Counting from the first total collapse, as I usually do, I’ve been sick for 16 years. Counting from when the trouble began, it has been at least 32. Surprise at this is common. “But Priscilla,” another friend says, “you were so active.”

Yes, I was active. The trouble was hidden. But my journals record how bad I felt. And I was trying hard to feel better. My journals record that too. Standing and sitting were difficult; moving helped. “You were compensating,” my dad says. Yes, I was compensating.

So I was a very busy, moving-around kind of person. Not to mention just plain willfully persistent. Slowly the trouble grew, then quickly and fitfully. I lost more and more, recovered less and less. Until the pain started. That was 9 years ago. Then the pain stopped me. There has not been much moving since.


Pain has me awake early again. I look at the dark. I speculate about origins and causes. I lie in bed thinking of the number 5 and the number 6.

This is 5 pain, I decide. Five all over—very different, I think, from 5 in one place, just the left hip or the right elbow. My pain is usually structure-specific and triggered by use: I typed two paragraphs, now my hands burn. I tried a new little exercise, now my lower back aches. This pain is something else, familiar but uncommon. Blurry. Vaporous. It permeates my muscles, tendons, and connective tissue. Everything is exquisitely tender. Coverage—another dimension.

“Let it be. Let it be,” say mother Mary and brother Paul.

Lines of early light, blurred by my myopia, reveal the borders of the window shades.
Mind-numbing, this pain. I ride the diminishment in my mental acuity. I levitate. Just a little. Just enough.

When I stand to walk to the bathroom a deep ache rises from my feet to my hips. Back in bed, I hear a car outside. The refrigerator wakes and whirrs. My lower abdomen begins to ache, too, sharp, particular, insistent.

What next little brain, bestirred and becalmed?

I think of how decadent my lifestyle has slowly grown. Many weeks I am upright much of my days, taking care of small tasks at my desk, indulging my whims on the computer, even getting myself snacks and occasionally a meal. I have long conversations; I take very short talks. I can watch videos now, make my bed, gesticulate with abandon. And oh what heady freedom the Web promises and sometimes delivers.

How will I manage if I lose these gains? Have I already lost the skill of stillness? Of being?

The pressure and ache in my abdomen and, now, my pelvis waxes with the light. Correlation, not causation. I can just distinguish the joists in my ceiling from the white board between them.

Years ago I dreamed I was under water. I was afraid. How was I going to breathe? Then I tried it. I dreamed this again and again, and every time—to my recurrent astonishment—I could breathe under water.

Last night, I swam in my sleep. My crawl-stroke was good. And—to my amazement—I didn’t need to lift my head for air. As before, I could breathe under water.

This, just before waking. Never mind that I couldn’t swim very far. Never mind that I started to lose my sight and black out. Never mind. I could breathe under water. I could still breathe under water.

I’m tired. Must be nearly 5:30 now. The pain in my abdomen has eased. The refrigerator is quiet. No cars on the road. Later, weeks from now, when I’m revising this piece and preparing to post it on my blog, I will worry about whether or not my breathing under water is as good as it used to be. I will worry that in the dream, I was losing sight and consciousness because I don’t quite have the trick any more of getting air from water. Later.

Right now, I think I’ll see if I can slip back to sleep. I really don’t need to be up for a couple more hours.


  1. "I know how bad pain can be. It is an act of obeisance, of respect, of holy fear. I have not forgotten. I must save some numbers; I might need them."
    Thanks for this post. I can't empathize with the pain. But I do know the disconnect. "Are you sure?" people will ask, about whether I remembered to turn off the stove, or whether I believe there's a God. I usually realize right away that my emphatic "No" is not the same in their ear as it was in my mouth. It's not the "I'm not sure" that interchanges with "Hell, beats me." It's the "I'm not sure" of "I'm not sure of ANYTHING." Sure? Yes. But not SURE sure. It's your obeisance, respect, holy fear.

  2. I gotta concur with that high-school friend of yours... I never suspected you had any kind of disorder. You hid it very well, that took a lot of courage.

  3. Thank you for sharing your experience. You write beautifully.

  4. Oh, hell. I wish I could do something.


  5. Thank you all.

    Oh Dale, you do.

  6. I've been trying to think of what to say in response to this post. So many things. But today all I can squeeze out is: I can relate.

  7. Dear Priscilla, I'm so sorry you are sick. I wonder whether an MBSR course focused on dealing with chronic pain/disability could help. I also wonder whether (ie a functional medicine doctor's approach) might have something to offer (with probiotics, detoxifying diet, etc) given that a lactose-free diet helped you a bit. I hope if you are still nestled in bed regularly that you have a pet who keeps you company. Thank Goodness with the health challenges you are facing that you are blessed with a loving committed marriage and the creative gift of self-expression. May your spirit continue to grow beautifully.


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