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?

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Let Go

May 14, 2012 at 12:44 pm (Uncategorized) (, , , , )

Last time I wrote about holding onto everything I can. Today, I’m going to tell you about letting go. If you want to survive in Chronic Town, you’ve got to be able to do both—at the same time.

When I was feeling a little better a few months ago, when it seemed my chronic sarcoidosis was easing up, I took on new responsibilities. For years, I focused on fighting the disease, showing up as often as I could in my son Andrew’s life, being as good a partner as I could to my husband Jay, and writing with whatever energy I had leftover. But I spent so many months stuck in bed, caught up each day in the daily dramas of pain and sickness. When I finally made it through months of getting a particularly nasty chemotherapy agent called Cytoxan every two weeks and with my illness seeming to be in retreat, I was ready to re-engage with the world. In fact, I was desperate to get involved with something outside my own body.

I started by volunteering in Andrew’s second-grade classroom. I felt like I had missed so much of my son’s life that finding ways a greater presence in his life than a lump lurking in the shadows of my bedroom (as I saw myself, unfairly Jay says) was my first priority. Within a couple of weeks, I went from helping his teacher with weekly spelling tests to leading an advanced reading group twice a week. I soaked up Andrew’s joy in having me there.

When a friend asked me to join the board of a local non-profit organization that supports education, I signed on with just a little hesitation. I would be responsible for co-chairing an enormous fundraiser. It was a pretty significant commitment. But I felt like I had been in stasis for too long. I needed to try to make up for all the time I had lost to sarcoidosis.

I next got the idea to start an after school creative writing club at Andrew’s school. I was feeling a little overwhelmed with all the work the non-profit was requiring on a daily basis. It was much more than I’d anticipated. But writing is my passion. Helping kids claim their voices through writing, empowering them to believe they have something important to say, and getting them comfortable with writing before they have to write term papers was worth a few more volunteer hours each week. And since Andrew would be part of the writing program, the new gig had the added bonus of providing more special time with my son.

Then my health began to fall apart in January. I kept trying to do everything, even when it caused me pain and made me sicker. It felt like if I could just hang in there, keep my grip and put one foot in front of the other, I could outlast the latest disease flare-up. If I let go, I would be saying “uncle” to the sarcoidosis. I would let Andrew down, let these worthy organizations down, let myself down. “Hang on, just hang on,” I told myself.

A couple of weeks ago, I had a moment of clarity. I had to let go. Showing up for board meetings in a cold sweat from the pain or beaten down from the latest treatment wasn’t the point. I was clutching too tightly. I wasn’t helping anyone—including myself—by gutting through these obligations. I talked to Jay and my friends to get their insights. I cried. I got mad. And finally, I resigned from the board. Even though I felt tremendously relieved afterwards, it’s still hard. I worry over my decision and pick at it. I also let go of the reading group. But I decided to hang onto the after-school writing program. School will be out in a few weeks. I can make it.

Living with a chronic illness often feels like walking a tightrope. It’s a balancing act—with constantly changing conditions. The width of the rope, the force of the wind, the slipperiness of the walk are always in flux. What worked yesterday won’t necessarily ferry you across safely today. As I inch my way forward, I am sometimes off-balance from the weight of my hopes and fears and my family’s needs.

I want so much to be fully alive in this life I have. However, there are times to just let go, to trust that I’ll fall not into thin air but onto a solid net.

What about you? Has letting go of something important been the right thing to do?

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Get a Grip. And Keep It.

May 9, 2012 at 12:49 pm (Uncategorized)

This is so hard. I am trying to hang onto what I can of a normal life while the chronic, auto-immune disease I’ve been fighting for over eight years lays claim to more of me.

It feels like I’ve done this a thousand times before. I lose ground to sarcoidosis when the disease flares up. I lose my ability to work, to read, and to drive. It feels like I lose a little more with each flare. I clutch at what I can, and try to cope with losing what I can’t keep a grip on with dignity and resilience. As mysteriously and capriciously as the flare started, it will ease. There is no pattern or rhythm to it. The disease takes over for as long as it wants, for as often as it wants. When it chooses to back off, I have a few weeks or, more rarely, a few months to rebuild my life. Cautiously at first, but then with resolution, I barge my way back into my old life. And then, without warning, the sarcoidosis roars back into my body. The cycle starts again.

I am in the worst part of the cycle—yet again. I can speculate about what rattled the disease’s chains, about what caused the sarcoidosis to break through the pharmaceutical padlocks and deadbolts I endure to keep it at bay. But my best guess at what caused this flare doesn’t really help me with the reality of it. And the reality feels pretty grim right now. The effects of the sarcoidosis in my nervous system are debilitating. I’ve had a nasty, often migraine-like headache, for the better part of the past three weeks. Along with the headache, like dour ladies-in-waiting accompanying a vicious queen, come vertigo, temporary episodes of vision loss, and—new to the royal family since last weekend—constant distortion of the vision in my left eye.

Since Saturday, everything I see with my left eye is cast with a grainy film, almost like the “snow” you’d see on televisions when stations used to go off the air late at night. I feel like I should be horrified at a new sign of the sarcoidosis’ encroachment, especially since it’s with something as fundamental as my eyesight. I’m sure a healthy dose of horrified is in me, but I can’t feel it just yet. It’s buried beneath mountains of exhaustion and garden-variety overwhelmed.

Along with the flare up of neurological problems, the disease has moved aggressively into the bones and soft tissue of my left foot. Sarcoidosis in your foot is less dramatic than sarcoidosis in your brain, but the new osteosarcoidosis is making it hard for me to rehab the bad ankle sprain I had in January.

I tell myself that I have been here before and that I’ve emerged from the worst part of the cycle to an easier place. But it doesn’t help to know I’ve been here before. Maybe to other people this grinding through from more sick to less sick to more sick is beginning to seem routinized. But it feels anything but routine to me. I have no faith that this too shall pass. Although the disease has backed off before, I have no guarantee that it will do so again. “What if this never ends?” is something I ask myself a lot, when I’m really hurting. What if the headache doesn’t loosen its grip? What if my vision doesn’t return? What if my bones fall apart? What if I can never drive again? What if I am a bedridden invalid for the rest of my son Andrew’s life? What if this is all that’s left for me?

My husband, Jay, zealously believes—or, at least, he tells me he does—that I will one day cycle out of disease into relative health and stay there, before getting better and better. He assures me that I will be well, that things are hard right now but they will get better. He doesn’t know how, just that they will.

When I’m two weeks into a bad headache and worried I’m going blind, I often want to crack open his bottomless optimism (along with his head) and make him see how ludicrous it is. Lucky for him, I happen to like his head. So I’ve decided to let him do all the hoping for both of us. I am putting all my energy into hanging on. I can’t trust there are better days ahead. But I can keep a grip on this one.

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