Air Conditioning

July 24, 2007 at 2:59 pm (Uncategorized)

Last week I got some lousy medical news. I have diabetes. And my sarcoidosis is flaring, despite increased doses of both prednisone and Remicade. It didn’t sink in at first. I felt absolutely numb after meeting with my doctor and having her show me how to use the glucometer to measure my blood sugar and listening to her explain the difference between good carbohydrates and bad carbohydrates and the value of exercise in controlling blood sugar levels. I felt like I was watching myself from above. Or like I was observing someone else’s medical drama. “Oh, this is interesting,” I thought, as I stared down at the scene involving me, my doctor, lancets, squeezing my blood onto what looked like a matchstick, talk of heart problems, and the doctor’s old-fashioned pep talk delivered with requisite eye contact: “Just because things are bad now doesn’t mean they’ll stay bad, Rebecca. We’ve hit a stumbling block, but things very well could improve soon.”

I drove home in the hundred degree heat, lay on my bed while the box fan circulated hot air over me, and didn’t think. About anything. My husband Jay called from a business trip. “Do you need me to come home?” he asked. “I can cancel the meeting and drive back” “I’m fine,” I said. “Really, nothing has changed.” I cooked my three year old son, Andrew, his current favorite meal of baked chicken strips, potato pancakes with applesauce, and slices of raw bell pepper, carrots, and tomatoes. We watched part of Chitty Chitty Bang Bang. And then we went to bed in the basement because our bedrooms were too hot to breathe in, much less sleep.

The numb feeling didn’t leave—after Jay came home, after the heat continued to pummel our small, mountain city, after forest fires thirty miles away made breathing the air like inhaling camp fire smoke, after I got used to pricking my finger before and after every meal. I didn’t feel sad. I didn’t feel upset by the news that I was now a diabetic, along with having sarcoidosis in multiple organs. Whatever sadness I wasn’t experiencing, I made up for in anger and snappishness. Jay, as usual, took the brunt of it. Andrew got the second wave. Everything—except my recent health news—bothered me. The clutter in the kitchen bothered me; the tone of voice Andrew used bothered me; the fact we don’t have air conditioning bothered me (and, I decided, was Jay’s fault); having to get out bed in the morning bothered me.

If it wasn’t for my parents, I think I would still be stuck in this heat-hazed bubble of numbness and anger. Maybe my mom heard something in my voice over the telephone, or maybe she just had the good sense to realize that a person with a chronic pulmonary disease shouldn’t be breathing campfire smoke all day and a person with a chronic inflammatory disease shouldn’t be living in a ninety degree house. She ordered me to a hotel. And then she ordered me to stay there until she and my Dad arrived two days later with a portable air conditioner for our bedroom. They had found the last such unit in the state, drove four hours to our house, and installed it. I sit now in my sixty-six degree bedroom. There are no smoke fumes. I can breathe.

I don’t feel numb anymore. I feel sad and scared. Even though I’ve been residing in chronic town for three years, I have always paradoxically prided myself on being healthy. I used to be super-fit; I used to be an athlete; I used to take care of myself. But in the blessedly cool spaces my parents gave us (first in the hotel and then in my own room), I realized that I’m not healthy right now. I gained a ton of weight on the prednisone, and, along with the extra pounds, I picked up an entitled attitude toward food and eating. Because I had sarcoidosis and had to take such crummy drugs, I figured I could eat all the pasta I wanted and that dessert was my due. I stopped making exercise a priority because my joints hurt all the time. I stopped pushing myself to work out every day because I didn’t feel like it, and, gosh darn it, since I’ve had to do so many other things I don’t feel like—ingest chemotherapy, take medications that balloon me, worry about keeling over from heart failure, have various organs biopsied, and so forth—then I wouldn’t add painful workouts to the list.

With the numbness gone, I have a sense of resolve. I have changed the way I eat. But I still have a long way to go. I am relearning how to eat healthily. I am riding my stationary bike for forty minutes a day. I am compulsively checking my blood sugar. And now that I am paying attention to eating, I am amazed at how much junk I was shoveling into my mouth without even thinking. It’s humbling that I, the former super-star bicycle rider and twenty-mile hiker, am having to learn how to eat and exercise all over again. I feel like I’m practicing walking, or breathing.

I’m not sure my parents know that they brought us much more than an air conditioner. They gave me a space to accept that I have to make changes. They reminded me that I am not alone with my disease—or myself. They provided a room where I can write and think and exercise. They helped me stop being numb in the heat. And ready to try walking again.

1 Comment

  1. Lori said,

    I never seem to have any words of my own, but I hope you like this (thinking of you):

    Modified from:”Starfish” by Eleanor Lerma

    And then life suggests that you remember the
    years you ran around, the years you developed
    a shocking lifestyle, advocated careless abandon,
    owned a chilly heart. …….And then life lets
    you go home to think about all this. Which you
    do, for quite a long time.
    Later, you wake up beside your old love…..
    This is life’s way of letting you know that
    you are lucky. (It won’t give you smart or brave,
    so you’ll have to settle for lucky.)
    So life lets you have [an air conditioner]…..And
    then life sends you back to bed, to dreamland,
    while outside, the starfish drift through the channel,
    with smiles on their starry faces as they head
    out to deep water, to the far and boundless sea.

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