Ever since I discovered The Sun Magazine, I’ve wanted to be published in it. My dream became a reality in March 2020 when I wrote a piece for their Readers Write section on the given topic of Shortcuts:

IN THE SUMMER OF 1980 — one year before I graduated from high school and two years after I’d been diagnosed with muscular dystrophy — I had no summer job and no idea where my future would take me.

One day I was supposed to meet Ellen and Katie at the community pool. I grabbed my beach towel, slipped on my red Speedo and cutoff jeans, and headed out the door. Just shy of the cul-de-sac, I took the shortcut through a grove of trees, up the hill, across a field, and then down toward the sounds of the splashing and screaming, the smells of chlorine and Coppertone.

Even though my disease was barely visible, as I walked through the pool’s front gate I was sure every eye was scanning my body. Did they notice that hint of a limp? Were they whispering about how skinny I was?

Once I’d settled in, I had a good time. I could swim underwater nearly a pool length without taking a breath. I floated on my back. Sunshine and cute boys and ice cream filled the hours until I returned home.

Today I lie on my sofa, staring out the living-room window. My cane is in the corner. My muscles are withered. I need help walking. I’m too tired to go outside.

I close my eyes and revisit those summer days. I slip inside my young body as I walk barefoot across the spiky grass. The sun warms my tanned, toned arms. I zigzag through the trees. Together, my healthy self and I descend the hill into the water. We take the long way.

This essay is special to me because it was my first published piece. It appeared in The Plain Dealer Sunday Magazine in September 2001 with the attached image.

STEP BY STEP

There are 26 stairs leading up to my friend Marie’s apartment, where I have been invited to dinner. Marie is the best cook I know. She makes chili and rhubarb pie and chocolate chip cookies. But she lives on the top floor of her building.

I open Marie’s front gate, which is interlaced with the flowering white buds of a potato vine. I know that it is a potato vine only because I planted three of them in my front yard two years ago. One of them is dead, but the other two are thriving.

Eight steps across the gray cement entryway and I begin my ascent. The first time I visited Marie I thought I might have to drop the workshop she was hosting—there was too little parking and too many stairs. The sidewalk was slick with rain, and the climb to her front door felt like a trek up Mount Everest.

I start with my left foot, the stronger of my legs. My left calf is shapely and rounded, like a woman who has grown up climbing hills. My right calf has become withered and thin, blotches of sunken skin where muscle should be. My massage therapist says if I walk barefoot on the beach it will help build up those muscles. I hope he is right …

Touched

"I can feel the life force leaving me," Mike says as he massages my legs with his rough, careful hands. He doesn't use oil or lotion like the other massage therapists. Just his sticky, Marlboro-scented fingers. I lie in my underwear beneath a brown sheet. My bony shoulder blades and crooked spine press into the table, having long since lost their cushion of muscle. 

"We're getting older," Mike says, even though we're far from old. "Maybe that's why we're so afraid. We don't have the energy to fight like we used to."

Mike's eyes bulge like a bullfrog's. When I first knew him, I found them a bit frightening. His voice is raspy and deep. He has a dragon tattoo on his left biceps and a ponytail that curls down his back. I met him at the massage school, where he was training to be a therapist and I was getting treatment for muscular dystrophy. I always thought he was quirky, and he talks too much, but his massages are cheap …

A Visit From Leslie

Last Thursday, my friend Leslie came to visit. Never mind that she’s been dead for three years. I was lying on my moss-green bedspread staring at the roof of my eyelids some time around three o’clock in the afternoon when I felt a vague sense of familiarity. It was like a scent that you remember but you can’t quite recognize. I took a couple of deep breaths and let the exhales carry me deeper into the experience.

I didn’t know what it was at first. Maybe I was drifting into a dream. Maybe the Advil I took was making me spacey. But then it became subtly clear that Leslie had come to sit beside me.

I didn’t have to open my eyes to know it was Leslie. I didn’t see her or hear her …

A Good Sport

My inner right thigh has a five-inch black and blue mark on it. I’m thrilled. Not because I enjoy wincing in pain every time I sit down on a wooden chair or because I am fond of the purple hue of my skin, but because I did something to earn that bruise: I climbed in a bathroom window after locking the keys inside of the house.

This may not seem like a big deal to most people, but as someone who has muscular dystrophy, it is a gold medal in my personal Olympics.

Muscular dystrophy has taken away more than my muscle strength; it has taken away my confidence. I have been scared to try anything that requires a bit of athleticism. I am afraid of looking awkward, of falling down, of drawing unwanted attention to myself. Greater than my fear of getting hurt is my dread of discovering more things I can no longer do …

Regeneration

My left thigh is shrinking. I see a new hollow place where it used to be round and strong – or stronger. But the muscular dystrophy has sneaked in, shot through my body like an octopus’s black ink, and started its cruel attack. I panic every time this happens. Fear wraps around my diaphragm and shows me a slideshow of my worst-case scenarios.

I don’t ever feel the weakness approaching. I just look down at my body one day and see soft sunken skin, that of an old woman in a hospital bed with flabby flesh hanging from her bones. I know there is muscle loss all over my body in random spots, but I can’t see my own bony back or protruding shoulder blades unless I twist into convoluted positions and stare into my full-length mirror. But, as I sit in the bathtub, knees bent, head resting on an inflatable pillow, there is no ignoring that my left thigh now looks nearly half the size of my right …