Living Small

May 20, 2010 at 12:08 am (Uncategorized)

Yesterday I went with Andrew to our back-to-back piano lessons to practice for the next recital. The day before, I popped into my office and worked on my book for two hours. When I came home that evening, I felt like stretching my legs, so Jay, Andrew, and I went for a short hike up the hill behind our house. I was a little sore on our family walk because the day before, I had put on my rollerblades for the first time in over a decade and given Andrew his first in-line skating lesson. And the day before that, I had worked on my book for a solid eight hours.

It sounds like a normal life, doesn’t it?

I’ve been feeling better for the past couple of weeks. I’m not sure if my improved health is due to starting new drugs (Rituxin and Cellcept), stopping a difficult drug (Cytoxan), or proper planetary alignment. I’m a little nervous that, by proclaiming I’m feeling better, I’ll somehow jinx myself and return to 24-hour vertigo, a throbbing head, and bruising fatigue.

I cannot describe how thrilling it is to return to aspects of my “old” life—the activities I took for granted before I became seriously and chronically ill with sarcoidosis. Before I got deported to Chronic Town, I could get preoccupied with “big” questions: was I fulfilling my potential as a writer? Was I happy? How many children should I bring into the world? When should we move overseas again? Once it became clear that the sarcoidosis I was diagnosed with in 2004 was going to make having more babies or moving to Cambodia impossible for the foreseeable future, I deeply mourned the passing of these dreams. I didn’t want to believe that I would never again deliver a baby or stand on the other side of the world, but I did have to release myself from these dreams for the time being. Otherwise I would remain mired in loss.

Although I still feel a twinge when I hear about someone moving to Pemba or Qiqhar or when I meet a mother of four boys, it is nothing compared to my sadness at losing control of my life’s “small” details. Before landing in Chronic Town, I didn’t think of working on a short magazine piece, giving Andrew a bath, cooking dinner, folding laundry, or walking around my neighborhood as accomplishments. However—after two years of disabling neurological problems and almost equally disabling side effects from the chemo to treat the neurosarcoidosis—I understand that there’s nothing “small” about caring for myself, my child, and my husband.

This change in focus—almost like turning around the long lens of a telescope—is the most profound lesson chronic illness has taught me. Once, I gazed at the horizon and longed for the unseen continents behind it. During all the days I spent in bed, too dizzy and disoriented to join my small family for dinner, I began to twist the telescope around. Instead of seeing the fuzzy shape of far-off lands, the lens magnified the world around me. Rather than squint my eyes to catch a glimpse of some vague writing project, I’d try to put words onto the page in front of me. Instead of moping about the babies I can’t have, I try to concentrate on the beautiful child who shares my life. Although it would be nice to some day visit Pemba, I’m right now more interested in exploring the trails around Helena. It’s been two years since I’ve walked into the pine trees and felt the spring sun on my back.

Before I went to Chronic Town, I didn’t understand how gigantic the “small stuff” can be. A cup of scalding hot Earl Grey tea; talking to my friend Amy on the phone; watching pancake batter bubble on the skillet; buying new shoes; writing a whole chapter of my book; meeting Jan for coffee; talking about writing with Martha; watching three episodes of Medium in a row with Jay; making Andrew practice piano; sharing lunch with Molly; finding just the right present for my mother and forgetting to mail it; sweeping clean the wood floors of the kitchen. Once the neurosarcoidosis lashed out, I lost so many of these “small” delights so quickly. I could have lost them forever.

I am tempted to dive back into my “normal” life—full speed ahead. However, it is wiser if I pace myself. I still have some sarcoidosis symptoms and I don’t have the stamina to go through a full day without a couple of rests. I don’t want to over-exert myself and cause a relapse, as I’ve done in the past. Also, I don’t want to lose the intense pleasure and gratitude that comes with each cup of tea and page of writing.

If I am miraculously returned to good health, I don’t want to forget the truths I’ve discovered in Chronic Town. Just because something is close at hand or familiar doesn’t mean that it is commonplace or insignificant. Although the wonders I am re-experiencing are small, they are mighty.

4 Comments

  1. Nancy said,

    My heart is smiling. N

  2. SharonMV said,

    So glad you got these precious small things back in your life. It gives me joy for you and hope for myself.

    Sharon

  3. Barb said,

    I love the description of looking through big end of the lens… and that is so true. Easy does it and glad glad glad you are getting this Spring, in oh so many ways.

  4. Amy Pridemore said,

    I rejoice for your small yet mighty wonders! As I am learning, joy is joy, wether it comes from touching my toes for the first time in months or scaling a mountain. Miss you, love you, seeya soon!
    Amy

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