Under the Pillow

December 2, 2007 at 12:15 pm (Uncategorized)

I’m not sure how many words I’ll manage today. I’d like to tell you the detailed story of my past couple of weeks. There were hospital days when I was in so much pain I measured time not by the big clock across the room but by the morphine pump next to my bed. Every ten minutes I could press the magic button and get two minutes of sweet relief, before mentally pacing out eight more minutes until I could press the button again. There was the parade of doctors, rustling into my hospital room, with their starched white coats fluttering behind them like royal capes. I would uncurl myself from my fetal position and remove the pillow I had put over my head to block out any ray of light and try to make sense of their theory of the day: meningitis, West Nile virus, neurosarcoidosis. Some day I’ll tell you about the doctor who insisted on turning on the brightest of the overhead fluorescent lights and then chided me as if I were a toddler for my condition.

Five days in the hospital, kept sane by morphine and my husband Jay’s cool, dry hand in mine. I had to stop myself from thinking too much about Andrew, my almost four-year-old son, who was at home with my parents. I felt his absence viscerally, as I knew he did mine from his life. Someday I’ll tell you the whole story—of oscillating between self-pity as viscous and impenetrable as super glue, and thankfulness for the love and care I received from all angles. My parents dropped their lives and dashed to their car and drove to us on icy roads; Jay was grey from worry; friends phoned and tried to visit (I guess that pillow over the head thing can seem antisocial).

I want to tell you this whole story not so that I can return to the morass of self-pity but because it’s important to speak it. Under my pillow in the hospital, I missed writing—not because I want to see my name in print, or get a book contract, or get paid for my latest magazine article. Through the haze of pain and narcotics, I realized that right now, this disease, this god-awful, goddamned sarcoidosis is my story, and it’s the story of thousands of other people stricken with other god-awful, goddamned diseases (well-known or obscure). I’ve hinted before of my guilt at writing so publicly about something as deeply private as the dysfunction of nearly every organ system in my body. Under the pillow at the hospital, I realized this inherited squeamishness is nonsense.

At home now, I’m practically an invalid. I can use the bathroom on my own, and I can struggle into the shower every couple of days. What I can’t do is care for my son, read a book, and, until today, write a word. I’ll pay for this session with my beloved letters, though. Already my stomach is roiling and the room is spinning. Talking on the phone for more than a few minutes exhausts me. When I crawl downstairs (remember, I still have my cast on), the rooms look unfamiliar. Andrew seems to have grown an inch every day. He and Jay have developed routines and rituals in which I have no part. I’m too tired to force my way into them. I crawl back upstairs and wait for the room to stop careening around me. In bed, things stop spinning enough for my worries to emerge. The doctors have increased my immune-suppressing drugs enough that they recommended we pull Andrew out of pre-school. He is simply bringing home too many germs for my weakened immune system to battle. We need to find a good nanny. We need to help him understand that this change in his life is not his fault. Somehow I want to help him not hate me for laying in bed, pillow over my eyes, the antithesis of what a mother should be.

What the hell is wrong with me? A trip to Billings (which involved light-blocking eye-shades, a pillow, noise-reducing headphones, and a shitload of oxycontin) to see a renowned neurologist confirmed what my local (and wonderful) rheumatologist already theorized. The sarcoidosis has likely inflamed a cranial nerve (the neurologist had a lot of other details about this nerve and the brain stem and interfacing with other nerves; I still had a shitload of oxycontin in my system and have left the minutiae to Jay). Apparently inflammation of cranial-facial nerves isn’t all too uncommon with sarcoidosis, since sarcoidosis is, after all, an inflammatory disease. It’s inflamed nearly everything else in my body: my heart, my joints, my lymph nodes, my liver, my spleen. Why not move on to the brain and its delicate wiring? Once the nerve acted up, I started getting really bad headaches, so I disobeyed my doctors and took ibuprofen. This kicked off my apparently non-uncommon (not uncommon, that is, assuming you have an auto-immune disease and are receiving anti-TNF drugs) case of drug-induced aseptic meningitis. However, for the first two days of my admission, the hospital doctors were convinced I simply had a really bad headache, so they persisted in administering IV versions of the ibuprofen I took at home, which prolonged the meningitis.

Hope for me right now is in reducing the nerve inflammation. If I can do this, the piercing pain in my head, along with the vertigo and nausea, should improve. So should the numbness on the left-side of my face. The doctors ramped up my Remicade to knock out the sarcoidosis behind the inflammation. Then I must take handfuls of Neurontin daily. The Neurontin is supposed to block nerve pain. So far, it’s just made me extra stoned feeling, though I am typing today, so perhaps progress is ahead.

I have pledged to myself not to live day at a time, not hour at a time, but minute to minute. It’s the only way I can manage my swelling anxiety at the thought of living without books, without being able to write and concentrate. Will the room ever be still? The light continues to bother my head, so I spend much of the day under the pillows, feeling the pulse of pain in my head and its echo in my heart. Having decided my stories are worth telling—that the story of my sickness is valuable—will this disease rob me of my ability to do so? It has taken so much from me already. Please let it not take reading and thinking and writing. Please.

But these thoughts lead nowhere. It’s time for me to return to my pillow.


  1. Angela said,

    Thank you for continuing to write and for sharing. Everything else I start to write sounds pretentious or contrived. Just, thanks.

  2. Paul said,


    Thinking of you – hang tight


  3. barb said,

    i am writing in a whisper in a sofltly lit room sending you soothing soothing sweet care. you are held in prayer, your family is held in prayer. impermanence rules the world and this will shift for you. meanwhile a sweet thought for you from les miserables:

    There is a castle on a cloud,
    I like to go there in my sleep.
    Aren’t anyfloors for me to sweep,
    Not in my castle on a cloud.

    There is a room thats full of toys,
    There a hundred boys and girls.
    Nobody shouts or talks to loud,
    Not in my castle on a cloud.

    There is a lady all in white,
    Holds me and sings a lulaby.
    She nice to see and she’s soft to touch
    She says, Cosett, i love you very much.

    I know a place where no-one’s lost,
    I know a place where no-one cries.
    Crying at all is not allowed,
    Not in my castle on a cloud.

    (we could allow crying…if its quiet…)

  4. rachelcreative said,

    Thank you so much for sharing. Warm wishes to you and your family.

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