Rebecca’s Rule of Two

March 31, 2010 at 4:51 pm (Uncategorized)

I’ve been busy since my last post to Chronic Town. I wish I could report to you that my busyness is because I’ve been skiing every weekend, or writing bundles of book pages for my agent. Or that I jetted off to San Diego for a weekend of surf and sun. It’s not that I actually have the energy to do any these things right now. But it certainly would be nice to offer one of these “cooler” responses to the question I get asked all the time: “How are you, Rebecca? How is it going with that chemo?” Although I’m tempted sometimes to say, “What chemo? I’ve been off heli-skiing,” I don’t. Instead, I give my standard, honest response. “I’m hanging in there. I’m just taking it a day at a time.” There you have it.

When I say I’ve been busy, it has been with the events of everyday life. I spent an afternoon volunteering in Andrew’s kindergarten classroom to help the kids make stained glass. I watched Jay coach Andrew ‘s floor hockey team in a close game. We went out to lunch as a family. I made soup. Other prosaic–but nevertheless time-consuming–activities have included driving 90 miles to Missoula to see a doctor, practicing piano with Andrew and going to our lessons, and I’ve writing as often as I can to my good friend Amy in California.

Heli-skiing, I am not. Stained glass and floor hockey and dinner out are not the stuff of adventure living. But they are dear and precious to me–and plenty adventurous given my fragile health. I’ve written before about how the limitations that sarcoidosis has imposed on my life have made me appreciate the everyday routines of living all the more. I have found that I value simple activities much more after disease, hospitalizations, and months of bed rest made clear that I could lose everything. Before I got sick, I tended to judge my life by accomplishments. My unexpected pleasure of playing the piano wouldn’t have counted in this equation where all activities were measured for difficulty, prestige, distance. A family trip to Missoula wouldn’t matter, either. What an awful set of standards I would have inflicted on my son and husband.

I am far from well. But I am doing more and more. And I love the tasks that make me busy. I feel strong and accomplished when I’m able to make soup, or get out of the house with my family. I don’t have to shut off an internal nagging voice that is telling me I’m not really living if I’m not planning our next overseas trip–because that judgmental part of me is quieter. I feel close to Andrew and Jay; I feel connected to our friends near and far.

I continue to learn. Although my activities aren’t the stuff of high drama, they wear me out. For a woman who used to work 10-hour days and then make a multi-course meal for fun, it’s taken me a while to fully comprehend how exhausting it is for me to accomplish tasks like volunteering at the school. After years of “overdoing” it–and then having a sarcoidosis relapse or catching pneumonia or some such mess–I recognize what my limits are. I call it the “Rule of Two.” On a good day–which means a day during a week when I don’t chemo and when I haven’t had many “blind spells” or much vertigo–I can do two things before Andrew gets home from school. For instance, I can write for an hour (sometimes two when I’m lucky) and I can cook. Or, I can talk on the phone for twenty minutes and I can write. Or, I can meet a friend for lunch and cook. Usually, I can have dinner with my family, look over Andrew’s papers from school, help him with homework, and put him to bed on “my” nights in the schedule. I can sometimes flout my own “Rule of Two” and get away with it for a couple of days. Soon, though, I crash and need several days to rebuild.

Recognizing my own limitations and then following them sets up some hard choices. Because talking on the phone has been difficult for me since my first neurosarcoidosis episode in 2007, I can no longer keep up with my family and friends by phone. I also can’t except time with friends from my “Rule of Two.” Everything takes energy–even just talking with friends. I want to write everyday. But–with school art projects and all–I just couldn’t fit a blog entry into last week.

I just got chemo today. Chances are I’ll feel rather wretched for a spell. But I’ll try to write as much– and as often–as I can.

Be well. Be strong. Try and see the beauty in every small task.

1 Comment

  1. Zoe Ann said,

    Rebecca, I must disagree with you…I believe time spent with Kindergarteners during art is indeed adventurous. I have friends who would rather eat broken glass than expose themselves to the unpredictability of young people. I commend you. I so enjoyed meeting you and your wonderful family at the Seder Meal. From what little I saw of your family, I believe you may very well be blessed with plenty of adventure as you attempt to keep up with your son and all that daily life throws at you. Take care and thank you for allowing me to share the time with you and yours.

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