Ellen Painter Dollar
I was eight or nine years old, heading to my mom’s car after school. My friends, identical twins Jen and Liz, were walking alongside my wheelchair. I was recovering from one of my frequent surgeries to insert metal rods in my bones, made fragile by a rare genetic disorder.
Glancing at Liz and Jen walking on the grass as I wheeled myself on the sidewalk, I was suddenly overcome—stunned, baffled—by this thought: My friends are walking. They can go wherever they want, supported only by their own bones and muscles, hands free to carry book bags or wave at friends, keeping balance and momentum without thought or effort.
My friends’ ability to move through space with such ease struck me as miraculous, nearly impossible. I felt the same way I feel watching a movie pilot fly a helicopter through a storm, or an Olympic gymnast do a perfect balance beam routine. Logically, I understand that what these people are doing is possible, even something I could theoretically do myself. But what they are doing is so far removed from my capabilities and experience that it borders on magic.
Years later, I did eventually learn to walk supported only by my own muscles and bones (well, and those metal rods too). One day in eighth grade, I went to school using my crutches, then put them in my locker and never used them again. I soon switched from full-length leg braces to knee-high plastic supports, then gave those up too, shortly after graduating from college.
Keeping my balance and momentum would always require some thought and effort. Long walks would always leave me stiff and sore. But for about 25 years, from my teens through my late thirties, I walked with strength and independence.
I even began taking walking for granted. I forgot the magic and the miracle.
Now I am again someone who considers this most basic way of moving through the world with baffled wonder—and with grief. Because it’s one thing to observe others doing something with habitual facility that I’ve never done, and another thing entirely to remember that once, I could do this thing too. And now I can’t.
**
There was something cruel about this Ash Wednesday dawning gray and cold (snow showers, a sniffling sick kid on the couch, the forecast predicting temps below zero for the coming weekend) in a year when Easter will arrive especially early, on March 27.
During Lent, we look our failings in the face. We confess our sins, lament our weaknesses and griefs. We may go without certain pleasures or take on new disciplines. We do these things because we believe transformation—of ourselves, our communities, our world—is possible.
But when an early Easter will likely also dawn gray and cold, snow still on the ground and kids still sniffling, when our colorful Easter clothes will be hidden under damp wool and dingy down jackets, when the earth’s transformation from winter to spring will appear only tentatively, obscured, then what of our transformation?
Perhaps an early Easter is a truer reflection of how resurrection usually manifests—not as a perfect spring day when we revel in sunlight on bare skin, not as an empty tomb and the heart-stopping realization that the one we thought was dead is right here, speaking our name. More commonly, resurrection is faltering and barely noticeable—a slightly higher slant of light, a whiff of damp soil carried on a chill wind, a patch of grass at the yard’s edge where the snow has begun to melt.
I am desperate these days for transformation, for obvious and spectacular change in body, mind, and spirit. Especially body. But tenuous and equivocal transformation may be the best I can get.
**
When my oldest daughter Leah was a baby, we walked everywhere. With Leah in her stroller, we’d walk to the dry cleaners, drug store, library, or pediatrician. If we had nowhere in particular to go, we’d walk the neighborhood, turning down unfamiliar streets and picking out favorite houses—solid and comforting colonials, sweet bungalows with wide front porches. When Leah was sick and woke extra early, we’d go out walking, greeting neighbors turning on their sprinklers or grabbing their newspapers. We walked so much that our neighbor kids called me “the walking lady.”
That I, with my history of three dozen broken bones, crutches, leg braces, and wheelchairs, would be known as the “walking lady” was a spectacular transformation. All that walking wasn’t exactly easy; I was grateful for the stroller’s support, and would stretch when we returned home to keep my muscles and joints from seizing up. But walking was my default solution for structuring long days with a toddler, a near-daily ritual.
I can’t walk any more, not like that anyway. Not every day, not for blocks and miles, even with the walking stick (I refuse to call it a cane) that I always use now when I’m out of the house, and sometimes when I’m in it. Things hurt in a way they didn’t back then; my knees have no more cartilage and old injuries flare up. I’ve lost stamina, balance and strength.
I look at family photos or videos from years ago, in disbelief that I was ever that young or that thin, that my children’s hands were ever that tiny and their voices that high. Mixed up with the particular brand of parental grief spurred by growing children—unavoidable, necessary, tempered by the presence of those same children here and now, with hands that play the piano and make art and type text messages, voices that sing and snarl and ask for lots and lots of rides—is my grief over losing the person I was when they were little. Not just the person who was 10 pounds lighter with an unlined face, but the person who could walk and walk and walk.
I miss the person who carried a two-year-old in a body cast (Leah inherited my fragile bones) up and down the steps of our front porch and the staircase to our bedrooms and only bathroom. The person who loaded three children into the minivan and corralled them through the grocery store, then came home and carted heavy bags inside, unpacking them while fixing snacks and changing diapers and carrying the baby upstairs for his nap. I grieve the person who could do all that, who would crawl into bed tired and sore, but wake the next day ready—and able—to do it all again.
Actually, words like “miss” and even “grieve” are too small. I crave that person. I demand to get her back with a desperate, furious rage.
**
I begin this Lent aching, literally, for transformation, for reversal of both my infirmity and my distress. I long for healing. As long as my despair over losing the body I used to have—the person I used to be—burns bright and hot, I will allow it to propel me down whatever path might lead me toward whatever healing is possible.
Fed up with the hassle and stigma of relying on opioid medications to control my musculoskeletal pain, I’ve begun tapering my medication dosage. With the guidance of a psychologist who specializes in working with people with chronic medical issues, I’m making changes in diet, activity, and habits of mind and body. A physical therapist, also specializing in chronic pain, has started me on a daily exercise program to build muscle and stamina.
I want to be the “walking lady” again. I want to be strong and capable again, in whatever way that is possible given the changes to my skeleton that can’t be fixed.
I thought about naming any one of these efforts—the improved diet or the new exercise plan, the healthier habits of mind or the reliance on less medication—as my Lenten discipline. But I couldn’t choose one; they are all important and I find it’s best if I allow myself to focus on different ones on different days, depending on what my schedule demands and what hurts, or doesn’t, that day.
Besides, Ash Wednesday and Lent aren’t only about confession and repentance and change. They’re also about naming the reality of grief, loss, failure, and death, about simply recognizing how things are—that we are dust and to dust we will return. The Ash Wednesday liturgy in the Book of Common Prayer includes the responsive, repetitive Litany of Penitence. Vocabulary.com defines “litany” this way: “If you’ve got a whole slew of complaints to get off your chest or requests to make, you’ve got yourself a litany — a long, drawn-out list.”
Well, I’ve got a whole slew of complaints—a long list of ways I ache for transformation, in body, mind, and spirit. Right now, the best motivation I’ve got to engage in the work of transformation is to repeat my litany, the losses and injuries that have made the “walking lady” into someone who keeps a walking stick by my bed, because those first morning steps on stiff, painful legs can feel as impossible as walking without crutches and braces felt when I was in elementary school. I repeat my litany not to wallow in self-pity, but as a reminder of what I want to change.
What I want and need is a healing miracle, one that requires my complicity. I’m unlikely to get an obvious New Testament-style miracle—crooked, weak bones made straight and strong. But I want my healing miracle even if it’s as subdued as our too-early Easter is likely to be. My challenge now, and for the rest of my life, is to accept my limitations without succumbing to or exacerbating them through foolishness or sloth. I want to claw my way toward whatever healing is possible, while also recognizing the healing that I always and already have access to, because it abides alongside the pain and disability that are here to stay.
In a New Yorker piece on living with an autoimmune disorder, Meghan O’Rourke describes this “balancing act” of living with chronic illness. “The real coming to terms with [chronic illness] is recognizing that you are sick,” O’Rourke writes, “that the sickness will come and go, and that it is often not the kind of sick you can conquer….[that your illness is] something to deal with, but not something to fuss over. In order to become well, I would have to temper my own fanatical pursuit of wellness.” We are messed up, there are things we can do to be less messed up, but we can’t entirely clean up the mess no matter how much willpower and hard work and smarts we bring to it, and the sooner we accept the twin realities of our agency and our powerlessness, the better off we’ll be: This sounds an awful lot like Christianity.
**
An early Easter dawns gray and cold. The wind carries a fleeting scent of soil. Bits of green peek out from the dingy white landscape. I rise from bed to take my first steps of the day, on legs strong enough to carry me forward without my walking stick. The act of walking is magical, unbelievable, not because I can’t do it, but because I can.
Propelled by my stubborn and irate grief, my body irredeemably broken yet ever resilient, demanding God’s help, I get up and walk toward my Easter miracle.
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