Step by Step (cont.)

… I purposefully pound my white canvas sneakers on top of each black-checkered stair, creating a thumping noise, as though I’m trying to squish a cockroach. I wear sneakers that are light because the weight of a heavy shoe feels like something more to carry, another burden for my muscles to absorb. My friend, Andrew, who also has muscular dystrophy, says that high-top sneakers help steady his walk. But the last time I saw him he was having trouble getting up the slope of a curb.

The slap of sole to cement makes me feel more grounded, more in touch with my lower limbs. Too often I float in my mind, far away from the prison of my body, far away from the tightness in my hip joints and the fatigue in my legs. Stomping my feet on the ground draws me down into my body and I feel strong and powerful and fierce.

I lift my thighs as high as they go, trying to bring them somewhere near my chest. I can barely lift them to my stomach. But still, I can lift them. I’m stronger than most of the people who attend my muscular dystrophy support groups. I remember the former firefighter who looked up at me from his wheelchair and said, “God, I wish I could move like you.”

The mental game begins: I will not touch the iron handrail. This would be to give in— to the disease, to my weakness. Soon my body would forget what it has been able to do. I cannot let it forget. My shoulders sway to the left, then to the right with each step, my upper body compensating for the weakness of my pelvis and gluteus medius. Before Dr. Schmidt diagnosed me, when I was 13, I didn’t know where the gluteus medius muscle was. He said muscular dystrophy is degenerative, that I should stay active but “don’t overdo it.” Every year I go to his office and he pushes against my arms and asks me to flex my ankles and walk on my toes. Then he marks numbers in my medical file and tells me to come back next year.

I will not grab the handrail. It’s right there, to my left. It would be so easy to reach out and touch its cold green metal. I could pull myself up a bit and steady my gait. But I need to practice balance for those times at the movies when there isn’t a handrail to support me—like when I went with my niece to one of those new stadium-style theaters.

I reach the platform between the second and third floors and rest at the doormat that says “Welcome.” I try to keep the momentum going, but fatigue has settled in. My body slows down, as though I’m walking through a fog of thick humidity. I remember heavy summer days when the heat felt like a child clinging to my legs. That sensation assaults me now, even though the air is cool. My thighs fill with lead. My right foot lands on its outer rim. Did I used to walk more flat-footed? Is this the first sign that my ankles are becoming weaker?

Only one more flight, I tell myself. The corridor is dark and winds to the right. I can do this. One, two, three, four . . . I count in my head to distract myself from the effort of my body. I don’t know when I started counting steps. Maybe four or five years ago when a stroll to the corner store became a series of calculated movements. One step in front of the other, heel, toe, heel, toe.

I reach Marie’s apartment. It smells of chili and garlic bread. Marie bounces toward me and throws open her arms. I am short of breath when she hugs me hello. I smile and lean into her shoulder.

“Hey, look! No hands!” This is what I used to scream to my brother when I could still ride a bicycle. Today I climbed Marie’s 26 stairs—and I didn’t touch the handrail.