The She That Is Me  Dana Snyder-Grant, LICSW

It is July 1983. I live in Waltham, Massachusetts, and teach history at a private high school.

One night, I wake up and start walking towards the bathroom. I feel intense tingling sensations in my feet as I totter out of the bedroom. I worry that this is another exacerbation of multiple sclerosis, the illness that has startled me for the last two years. Or am I just groggy and out-of-it because it’s three a.m.?

I wobble back to bed but have trouble falling back to sleep. What is going on inside me? I obsess about my body.  I want to control it, but finally cry myself to sleep.

The next morning, my fears are confirmed. When I try to get out of bed, I can’t feel my feet on the floor at all. I don’t know where my body is in space. Close to nine o’clock, I call my neurologist and make an appointment. She will see me that afternoon and confirm that this is MS. I have lost my balance. I have lost my innocence.

That night, I cry myself to sleep again. I am terrified. Friends have brought me dinner and helped me to laugh, but still, when they leave, I am alone, in a body estranged.

The next day, I start to compensate. I hold on to furniture in my apartment, the first floor of a two-story house. I call the local chapter of the MS Society. Three hours later, Debra, the support services director, comes over to loan me a walker. It will help me balance and get around, if I’m willing to use it.

Debra’s visit and generosity warm me. As she leaves, I finally notice that outside my door, the sky is a cloudless blue. I want to get out of my house and not let my body imprison me. I step onto the porch and gingerly go down the stairs, grabbing the porch railing with one hand and dragging my walker with the other as it bumps down the seven steps. When I had looked for an apartment the previous year, it hadn’t occurred to me that I wouldn’t be able to navigate stairs.

I stand in my driveway and face the road with my walker in front of me. I discover that I am trembling. It is my self-image, not trust in my physical ability, that is shaken. I fear what others will think of me. What do I look like, holding on to this walker for balance? It disgusts me. Twenty-seven years old, I’m supposed to be in fine health. Aren’t people who use walkers either elderly or mentally retarded? I am dismayed to recognize my assumptions and prejudices. Young teens walk by my driveway and gaze at me,  or is it through me? Do they see me or the freak I believe I am? They laugh as they easily walk on. Don’t mistake me for a retard, I want to shout. Then I gulp with shame for such thoughts. An older couple walks by and also stares, but then they nod and smile, acknowledging my presence. Later, it occurs to me that they might understand, because they also know human frailty. They are not as afraid as I imagine the teenagers are, or as I am.

Slowly, I walk down my driveway to the road. Lift the walker and my foot, move them forward, place them down and step. Balance! If I ever get it back, I will cherish it.

I reach the sidewalk and take a left, aiming to go around the block. Slowly, I pass the Catholic church. Its stoic silence encourages me to pause. Then I continue to lift and step. I am getting the hang of this walking.

I see my reflection in a store window and stop suddenly. I am outside myself, looking in. Seeing myself so starkly, needing the walker, I feel pity. I don’t want to see this vulnerability.

I am back at my driveway, exhausted. I lift and step on the drive. When I get to the porch stairs, I look around but see no one. I sit down and push myself up the stairs, again dragging the walker with me. I stand, lift, and step through the door into the living room, and collapse on the couch.

That day, I begin a course of Prednisone. This is my third MS exacerbation in five months. In March, my legs felt heavy and stiff; I walked like a robot— gingerly, yet mechanically. In May, I lost my coordination; with my hands feeling huge and clumsy. I couldn’t tie my shoes or hold a pen. Those symptoms have remitted almost entirely, but I am overwhelmed by this constant onslaught. My loss of balance has uprooted my identity, the person who I believe I am.

I call my brother in New York. I cry and ask him what I did to bring on this exacerbation. I have turned my fear and anger at this illness against myself and into self-blame. Adam reminds me that the illness is not my fault; this flare-up is probably due to the position of the constellations in the sky. Skeptic that he is, his humor helps me to test my reality and to reconnect with some vital part of me. I am reminded that relationships sustain me.

The next week, my balance begins to return in more ways than one. I can move around my apartment with greater ease, although I still use the walker when I venture outdoors. Now, I smile at others on the street. I notice the trees and the birds, more than what strangers may perceive.

Towards the end of July, I visit Adam and his wife in upstate New York. The rest and relaxation and the support of loved ones soothe my body and soul. I start to let go of judgments of myself and my body. I talk and cry about my losses and fears. I begin to admire the cane that a carpenter-friend has made me. Over and over again, I’m learning what I can control and what I can’t.

I’ve begun to grieve. Running away from my grief that summer day with the walker estranged me from myself. I was fighting the MS, not learning new ways to respond to the illness. In my attempt to deny my own negative self-judgments, I imagined that others had those biases. I have to let go of my own and society’s prejudice in order to accept myself.

The next year, I decide to attend social work school. I want to help others deal with the loss and vulnerability that encompasses life. My studies and psychotherapy help me to understand myself. I read Stigma by Erving Goffman, the renowned sociologist, and see the interplay between my own self-image and society’s projections. I continue to grow up.

Twenty years later, I tell the story of how my prejudices dared to challenge my self-image. I skirted dangerously close to self-loathing on that summer day. When I walk past a store window now with my cane, the woman smiling back understands. I am no longer outside myself.  She is me.

This article was first published by the National Multiple Sclerosis Society in 2004. 

Dana Snyder-Grant, LICSW, is a writer and a psychotherapist, specializing in chronic illness and disability. She is a columnist for her local newspaper in Acton, Massachusetts, where she lives in a co-housing community with her husband and two cats. This essay is included in Ms. Snyder-Grant's new book, Just Like Life Only More So and Other Stories of Illness. The book  can be ordered at her web site:  www.justlikelifeonlymoreso.com . Her e-mail is danasg@newview.org: