January 30, 2008 at 5:10 pm (Uncategorized)

Hi all–

Jay again, with another brief update. Well, maybe it’s not so much of an update, as that seems to imply something new. What we have on our hands instead feels more like a holding pattern. Bec still feels really poorly and continues to have difficulty (and much nausea) reading and writing. She appreciates all of the care and concern you, her loyal readers, have and continue to express, and she looks forward to getting back to posting more regularly just as soon as she is able.

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They Call Me “Headache”

January 4, 2008 at 3:03 pm (Uncategorized)

Pain is mysterious. It’s also extremely difficult to understand, to think about, and even more so, to share my life with.

I know there are great wisdom traditions, millennia in the making, which have grappled with human suffering. I know that multitudes of people under a vast and timeless sky have drawn solace from the faith that the pains of their flesh have divine resonances. I also know that pain management is an emerging arena of medicine, that doctors are being pushed to take seriously not just the causes of disease, but its repercussions and syncopations of pain.

But none of this is what I want to write about today. Instead I want to give voice to the experience of my pain—not because I want cyberspace to feel sorry for me, or because I feel like there is something extra terrible in what I am enduring. I don’t need formulas for how to feel better. I simply want to understand my current reality. For me to do so, I need to turn to language, even when the very process of trammeling experience behind the little fences and courtyards of words is frustrating beyond belief.

Let me start by saying that today’s entry has been weeks in the making. Not only have I been in a lot of physical pain, but my brain has been affected by the latest flare-up of my disease. It’s been a tough patch for me. I am at my core a reader and a writer. Since my hospitalization over six weeks ago, words have made me physically sick. They dance and spin on the page or the screen when I try to look at them, making me dizzy and queasy. My solution has been to try to write in fifteen minute intervals every day. Sometimes what comes out is utterly garbled. I spend most of my quarter hours trying to make sense of what I typed the day before. I probably should have picked an easier topic with which to re-enter the blogosphere, but pain is where my heart, and more importantly, my head have been. So I appreciate your patience.

Like I said, the source of my pain is in my head. This pain has changed my life. It has left me unable to work, unable to care for my son, stuck in bed, literally holding my head for much of the day. But trying to describe it somehow makes my pain—and me—feel banal. Perhaps I am just confronting the familiar experience of a writer grappling with the limitations of language, but the word “headache” feels like it comes from another universe, a place neatly drawn and prettily colored by the manufacturers of Excedrin or Tylenol. The pain in my head simply can’t be related to this basic word. Yet I lack another.

My headache originates behind my left eye. It throbs in time with my heart, weirdly creating the sensation of pulsing death, not life, across my head. The pain spreads across my skull and down the left side of my face. My bones throb along to the headache’s rhythm. The headache is a constant. I’ve been quizzed by internists, hospitalists, neurologists, and rheumatologists—along with their fluttering entourages of nurses and assistants—to rate my pain on a scale of one to ten. Sometimes they even pull out a sheet of paper with ten handy faces in visages of various contortions ranging from mild discomfort to outright, teeth-baring agony. In the past six weeks, I haven’t dropped below a four on their scale. I often live in the eight-to-nine zone. When I’m involuntarily mimicking the higher chart faces, all I can do is wait. I try to wait with grace, sometimes successfully. I’ve learned some excellent deep-breathing exercises not too dissimilar from the ones I used for childbirth. I take narcotic pain medication. I’ve found that the best thing is to lie on my side, cover my head with pillows, and gently press my fingers into the spot where the pain starts. I feel the thrum of the headache work its way down my finger bone, into my wrist, my arm, before it is reabsorbed into the bigger beat of my body.

Sometimes the pain in my head obliterates thought. I just wait for the hours on the clock to revolve enough for me to take another pill or for the pull of the headache’s black hole to relent a little. But there are other times, on my side under the pillows, when thoughts flicker through. I suppose I should use these limited opportunities to make myself think positively. Usually, though, I wonder. What is this pain? And where am I in it?

I know this pain is certainly of me, emanating from my own flesh, emerging from the workings of my brain, my neurons and axons and dendrites. It is me—my body—that produces its own pain and offers it up for me to register, record, and experience. But my pain is also utterly Other, so distinctly itself that I can’t quite imagine that the fury in my head is actually being caused by something within me. It’s easier for me to envision my physical pain as another other entity – a feral animal crouched across the room from me, gazing at me hungrily, then sauntering over occasionally to sink its fangs into my temple, to probe the nerves behind my left eye, to leave a rank residue behind.

At least I have the benefit of having a diagnosis, of knowing what is causing my pain. There are thousands of other people living with chronic pain of unknown origin. For me, this is chronic, multi-systemic sarcoidosis in an acute phase. The acute part means, as best as I can understand, that the disease has, for the moment, grown bored with my heart and my lungs and manifested itself as neurosarcoidosis and osteosarcoidosis. (If you’d like to read more about neurosarcoidosis, I’d recommend the NIH site: http://www.ninds.nih.gov/disorders/neurosarcoidosis/neurosarcoidosis.htm.)

My doctors have determined that the sarcoidosis has not left its classic calling card of granulomatous lesions on the pinky-grey coils of my brain tissue itself, but has instead inflamed my cranial nerves—the wiring that emerges from my brain. The docs say that my cranial Nerve VIII is particularly affected. (What a prosaic system for landscaping the subterranean depths of our face and brain, like grafting a city grid system onto the mysteries of balance, reading, and smiling.) Nerve VIII (which you can also call your vestibulocochlear nerve or your auditory-vestibular nerve or your statoacoustic nerve if you are feeling extra spunky) controls balance and regulates movements. Hence, my intense vertigo, my feelings of the entire world magically spinning around me, and my periodic falling over.

I am falling over. Armed with a diagnosis and with the best poisons the medical world has cooked up to try to treat me, this pain knocks me over. Literally. I learn about numbered nerves. I make my husband learn about vestibular processes. And still I am falling over. Still, I return to this place and the question of how to live in it.

It is easier to think about my pain as an Other. In Orientalism, his brilliant treatise on the intellectual process of — and rationalization for — colonialism, philosopher Edward Said used this notion of turning another human being, indeed a whole hemisphere, into an Other. Said’s key insight (a commonplace now) is that by defining someone else as something else, we are in the process naming and defining ourselves. So, if the colonized is “savage,” I — the great namer — am “civilized.”

I do the same with my pain as the white-suited Victorian in nineteenth-century India did when confronted with a world so new and strange. I think to myself that surely, rightly, this continent of falling over cannot be a part of me. Perhaps if I name it (Nerve VIII is a good place to start). Perhaps if I swallow handfuls of pills with names like Lyrica that should grace symphonies not capsules. Perhaps if I am injected for hours with other drugs that are truly poisoning me. Perhaps if I envision the pain as an escaped zoo animal waiting across the room to kill me. Perhaps if I make myself think about philosophy books I read fifteen years ago. Perhaps I will find a way to make sense of this black hole in my head.

But I haven’t yet. All I know is that the pain is here. It is in me. I feel its pulse across my fingers. I feel it push me down — easily, casually, with a flick of two of its fingers I am on the floor. My husband Jay suggested I think of the pain as a new neighbor encroaching on my property lines. That metaphor, though close, doesn’t capture the true essence of the pain. Neighbors are further away. Then he said, “Maybe it’s like you have a colicky newborn living inside you. Demanding constant feedings and then throwing them up. Crying all night, for no reason.”

I cannot love this pain like a baby. But the pain has attached itself to me like one. I must live with it; I must live in it. How? And what if the baby never grows up? What if this never goes away?

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