Of Spoons, and the Measuring Thereof

May 21, 2012 at 1:46 pm (Uncategorized)

“You must be feeling so much better,” people tell me—with obvious relief—when they hear I made it to China, that I’m making it to weekly meetings of the afterschool creative writing program I started, that I’ve posted a blog entry. I know they offer these positive pronouncements with the best of intentions. They like me, and want me to be healthier.

It’s true that I’ve pushed myself in the past few months to travel more, write more, and show up in the world a little more—while in the throes of a sarcoidosis flare-up and worsening neurological symptoms.

It’s equally true, however, that I have not been feeling better. On most days since January, I’ve had intense vertigo, debilitating headaches, episodic visions loss, crippling fatigue, and joint pain. In the past couple of weeks, the sarcoidosis has apparently moved to a new part of my brain, and is causing me to have grainy vision that makes me clumsy and nauseous. I don’t usually tell this to the solicitous people who want to celebrate my better health. It’s not like I want to be a perpetual downer.

A careful reader—and one not accustomed to the topsy-turvy illogic of Chronic Town—might wonder how it’s possible to do more while feeling sicker. It’s actually rather simple. After eight years of living with a chronic and serious illness—after three major surgeries, two implanted medical devices, three years of chemotherapy, a million dollars of medical bills, more MRIs, CT scans, pulmonary function tests, tilt-table tests, EKGs, and echocardiograms than I can remember, a baker’s dozen of hospitalizations, a hundred pounds gained on high doses of prednisone, and more days spent in bed than out of it—I’ve changed how I think about my sarcoidosis. In some ways, it was inevitable. You can’t share your life with a voracious disease for nearly a decade and not be changed. It’s like taking up with a bad boyfriend who doesn’t have your best interests at heart—and who somehow got the keys to your apartment and your immune system.

I’ve started trying to manage my sarcoidosis. This has, to a certain extent, required me to accept the disease. I’m not saying that I’ve given up the fight. I dutifully show up every month for my infusions of Rituxan and Remicade. I’ve accepted four “bombs” of 1,000 mg. of IV prednisone since the New Year. I am making yet another pilgrimage to the sarcoidosis Guru in Cincinnati next month, just to be sure I’m getting the latest treatment. I swallow capsules of fish oil and ginger by the handful. I try and think positively and envision myself healthy.

But I have stopped trying to live each day as though I’m healthy. Does that sound defeatist? For years, I fought against conceding an inch of my life to sarcoidosis. For years, I tried to live as I did before I got sick. For years, I dragged myself to the gym every day. I hosted elaborate dinner parties. I cleaned the house. I had impressive work goals. But this constant battle to preserve my life ended up eroding it a little more every day. I became more tired—and a lot sicker. I cycled between bouts of aggressive functionality and weeks in the hospital.

Then, a couple of years ago, someone emailed me a copy of “The Spoon Theory” by Christine Miserandino. I know this phrase gets thrown around a lot, but it’s true for me here: it literally changed my life. This brilliant essay replays a conversation between Miserandino, who has lupus, and her healthy friend. In trying to explain how the disease limits her life, Miserandino hit upon the idea of “spoons” as a metaphor. Each task, no matter how small—from taking a shower, to standing on a train, to making breakfast—requires a “spoon” of energy. Healthy, young people—the woman I once was, and the one I kept flogging myself into trying to keep being— have a nearly unlimited supply of spoons. But those of us with chronic illnesses have only a few spoons a day. We sometimes have to decide whether we’re going to be able to pick up a kid from school or make dinner, do a load of laundry or go grocery shopping, go to China or be able to work for the following month. As Miserandino puts it, “the difference in being sick and healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”

It took a while for Miserandino’s wisdom to sink in. I absolutely hated the idea of having to apportion my life. Talk of spoons reminded me too much of one of my favorite poems, T.S. Eliot’s “The Love Song of J. Alfred Prufrock.” Did I really want to mirror Eliot’s wishy-washy, paralyzed narrator and proclaim, “I have measured out my life in coffee spoons?” I mean, the guy can barely summon the courage to eat a peach. I didn’t want to give up peach eating, much less unmeasured living.

But after yet another hospitalization, after which I lost three months to dire illness, something clicked inside me. It was time to try something new. And, ironically, in my post-spoon-measuring life, I have ended up being able to do a lot more—or, at least, a lot more of the living that is important to me: traveling, writing, teaching writing, spending time with my family.

This is not to say that I like being parsimonious with my life. I don’t like engaging in the kind of thinking that has saved me: “If I use a spoon talking on the phone, I probably won’t be able to write a blog entry lately.” But I do like being able to write that blog entry. And sometimes I really do want to prioritize that phone conversation. Recognizing the cost of an action is part of growing up and growing into our lives, whether we’re in Chronic Town or not. We want it all. Perhaps this is why we chafe against our limitations. I hated that the China trip took up all my spoons for several weeks after it. Yet hating that I can’t have it all, all the time, doesn’t change this reality. This is my life now. It entails some planning, some measuring, some calculation, some letting go. As my old friend Eliot put it, “In a minute there is time/ For decisions and revisions which a minute will reverse.”

Do you have to think about the cost of an action? Do you have to measure out your life? What do you have to give up, in order to do something important?

6 Comments

  1. Barbara Barnes said,

    Rebecca,, sounds rather stressful over there in your abode. Crapola. I am glad you are getting choices even though they come by spoonfuls now. I parcel out my me time over time with others. Sometimes I don’t sink “into me” during my me time because I’m too busy lashing out and doing junk tv or reading or screen surfing. Mostly I have to give up over thinking things in order to do or enjoy what is important. Bet that doesn’t EVER happen to you..lol. Loving you much… Barb

    • Rebecca Stanfel said,

      Howdy, Barb. Sorry for the lag in writing back to you. It has indeed been on the stressful side around here. I took a break from even trying to write for the past couple of weeks. It’s been tough on the health front, with lots of new vision problems. I needed some time to wallow and to not keep trying so darn hard. With my vision so challenging, junk tv and Internet hasn’t been an option, unfortunately. But I’ve indulged in lots AND LOTS of non-highbrow audio books. I listened to 24 hours of Gillian Flynn’s new mystery in less than 3 days. Oh, and podcasts. Not sure how I would have survived without Rachel Maddow. I was going to get down on myself for needing to check out like this, but I’ve realized that an appropriate amount of wallowing is another way of managing a difficult period of health problems.

      I’d love to hear your comments on my new post.

      Happy summer vacation.

      rebecca

  2. nan said,

    Beautifully done R – this one is getting passed around – Nan

    • Rebecca Stanfel said,

      Thanks, Nancy,

      Yes, please do pass it around. I hope I can help people understand what it’s like to live with limited resources. “The Spoon Theory” has been such a powerful tool for me. I’ve emailed it to friends and family in the hope they will understand how different my life has become–from theirs and from what mine used to be. A phone conversation, a trip to the grocery store, hosting a play date aren’t “little” addenda to my day. One of these could be all of my day. I need their help. I need them not to keep asking, because it is hard to keep saying “No.” With Jay and Andrew, though, spoons have become our lingua illness. “Is that how you want to use your day’s spoons?” Jay asks, as I volunteer to cook dinner, or plot a major cleaning project. Usually, my answer is no. I’d rather spend my spoons on writing or something fun.

      It means a lot that you read my blog and take the time to comment. I hope you are feeling well.

      xo
      rebecca

  3. Ellen Gregory said,

    Yikes, not sure how to respond, because I have none of the obstacles you do, but, since you asked, I think the spoon theory can be applied to how much of what I call my ‘second career’ I can focus on. I started out this year trying to do everything every day – write novel, write blogs, engage on social media, read and comment on blogs…. Only to realise that I have a limited number of ‘spoons’ to spend on such activities after work. So now I try to be happy if I get two of those things done well each day. Hugs XO

    • Rebecca Stanfel said,

      Hi Ellen,

      Please excuse my long delay in getting back to you. I’m so glad this entry resonated with you. I’ve written here before that we all live in Chronic Town–not that everyone has a chronic illness, but that we are all trying to live as fully as we can in bodies that don’t always behave as we want, in lives we don’t get to control, in routines that we didn’t choose, and with resources more limited than we’d sometimes like. So it makes a total sense that “The Spoon Theory” applies to making a writing life. It’s hard to scrounge up the time and the energy. I also struggled with this before I got sick. It’s cool that there are these amazing new ways to connect ourselves and our writing to the whole world (our acquaintance is a great example) with blogs, Twitter, Facebook, WANA, Triberr… But I also am overwhelmed and worry that I’ll lose my writing time to the marketing and self-promotion we’re also supposed to be doing. So maybe the “Spoon Theory” could be a useful tool in reigning in the non-writing end of tasks. You know, “If I only have 45 minutes of time today, do I want to use that spoon on surfing?”

      Given the limitations on writing time, it makes your taking the time to read and comment here extra special. Thank you!

      Write on,
      rebecca

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