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.

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 …

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       Touched (cont.)   … Since my diagnosis at age thirteen, when we first noticed a slight limp and protruding shoulder blades, I'd spent most of my years ignoring my body. I pushed myself to work and play as hard as everyone else. I wanted to deny the disease that would cause a slow wasting away of the muscles throughout my body. By my mid-thirties, my right arm was thin as a matchstick and could barely hold a dinner plate. A trip to the supermarket used up my stamina for the day. Stairs were becoming harder to climb. My body was shrinking away. I moved to San Francisco, the mecca of alternative therapies, in the hopes that my dying muscles might come to life again.   "I can scare away animals with my eyes," Mike says as he moves my toes in circle formations. My ankles don't flex as easily as they used to. I swallow hard and try to relax. "There are these bees around my house, and if I take all my angry energy and focus it at them, they fly away. It works with people, too."   His anger, he tells me, is the only thing that keeps him going. He should have died from that poisonous spider bite he got three years ago. He shouldn’t have survived the bike spill that broke his collarbone. He should be paralyzed from the disintegrating discs in his spine that cause him constant pain.    "I don't believe in God," Mike says as I turn onto my stomach. "There's no way there's a God. There's so much suffering by so many people." As I stretch out my legs, my fingertips brush against a hollow crevice formerly occupied by muscle in the backs of my thighs.   The night before, I'd been seriously praying. The kind of prayer where I actually speak out loud. The "Oh God, I can't handle this anymore, I don't know what to do, please help me!" kind of prayer. My body was so sore I thought this disease would finally knock me down. I'd been going to the pool and eating leafy greens as my holistic doctor had recommended, but still fatigue enveloped me. Fear gripped me so tightly that I could barely breathe. Should I exercise more, exercise less, speed up, slow down, get more bodywork, get less bodywork, stop the vitamins or take more?   At 10:00 the next morning, Mike called me.   "Hey, Karen," he said. I hadn't spoken with him since our last appointment eight months earlier, but he didn't find it necessary to identify himself. "I'm in town doing massages and somebody just canceled. I got a gut feeling I should call you. If you come over right now, I'll give you a session."  I know Mike is a little out there, but he's been a thread in my life — one of those people who emerges every once in a while, like a flare in a pitch-black night. He can meet me at my deepest points of despair and help me find the wisdom there.  "Feel that?" Mike says as he presses on the knot in the middle of my back. "That’s the place that holds your breath. If you open that up, you'll release a lot of emotion."  Mike understands pieces of me in the same way I understand pieces of him. His breath is caught in the same place of tightness. He talks about his own fear and sadness as if it were mine.   "Take it easy on the exercise," he says. "Eat lots of ice cream, and have some fun. You're going to be fine." I laugh and feel a heaviness lift from my body. I trust his words. Today, his wild eyes don't overwhelm me.   I get off the table, get dressed and meet Mike in the hallway. I open my wallet.  "No," Mike says, shaking his head. "Let's keep this clean."  I want to burst into tears. Mike is poorer than I am, and he won't take my money. He reaches out and hugs me.   "It's really hard to be understood by ‘normal' people," he whispers into my ear. "I know you understand me." I wrap my arms around him and touch his broken spine.

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 …


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       A Visit From Leslie (cont.)   …  It was just like the days when we used to hang out in her basement apartment with the brick fireplace. She’d have her butt pressed against the wall with her stringy legs perpendicular to the ceiling as she worked out the tightness in her hamstrings. I was on the other side of the room stretched across her gold fleece blanket trying to touch my fingers to my toes. Alanis Morissette’s  Jagged Little Pill  played from the stereo above our heads. Even though we both had our eyes closed and we were doing our own thing, we were aware of each other’s presence.  We had a way of doing that. Even after Leslie moved to Maui, we were somehow connected. I would think of her and she would call ten minutes later. Sometimes when I telephoned her, she’d answer, “Hi Karen. I knew you were going to call.”  She said this so matter-of-factly it made me believe in another dimension.   I remember one evening during my visit to Maui when I sat in a turquoise folding chair outside of the shop where Leslie worked. With only five minutes until closing, I started to pull the sarong wheels inside the store so we could head over to Charlie’s for a burger.     “Wait a minute,” she said. Her head cocked to the side as if she were listening to a coyote howling in the distance. “I’m not going to close just yet. I’m about to make a lot of money.” And, sure enough, within minutes a woman sauntered into the store and bought $200 worth of merchandise.   *****  I’d been hoping Leslie would visit me ever since the day she died. She didn’t include my name in her suicide note, but I knew I was special to her. I was the first close friend she made since getting sober, and she was the first close friend I made since moving to San Francisco. We had that immediate connection that makes you think you’ve done this before.  Every once in a while, I’ld lie on my bed in the darkness and whisper my prayers to Leslie – as if she was now one step closer to God. Maybe if she put a good word in for me I could get that cute apartment near Ocean Beach or date that musician I met at the Bazaar Cafe. I tried to imagine what it’s like to be dead. Was Leslie a spirit floating around with wings? Did she know she was dead? Was she in big trouble for taking that bottle of pills? Sometimes I’d ask Leslie to come visit me or show me a sign that she was still around.    “Okay,” I’d whisper to the sky, “I really want to hear from you. Just don’t hover over my bed or float through my kitchen or do something that will scare the hell out of me!” I’d wait a few seconds, spook myself, and then say out loud, “Never mind.”   *****  I’d sort of forgotten about Leslie lately. She was like a great novel I read that was now gathering dust on the bottom shelf. Sometimes I still talked to her when I was driving alone and occasionally I scribbled her name in the sand, but mostly I figured she was okay up there and I needed to get on with my life. So I was kind of surprised to hear from her last Thursday.    She arrived slowly, subtly, as light as a mosquito on my arm. I felt her sit on the bed beside me. She didn’t say a word. She just looked on like a mother watching a sleeping child. My thoughts raced, forming a silent conversation with themselves and the presence that was around me.    “What’s it like up there?” I asked. “How are you doing? I miss you. Are you okay?” She just looked on, smiling without using her face. Then my mind thought it should try for a free psychic reading:  “Hey, am I going to get married? Should I move? What about this writing thing?” Her invisible voice washed over me.    “Ssshhhh,” she silently whispered, somehow stroking my forehead. “Sssshhhh.” My brain lurched forward: “But what about...”    “Ssssssshhhhhh,” she whispered again.      And then I stopped asking. I slowed down to the moment that was happening and I let myself feel. Something opened up inside my chest, like a cloud of lavender incense calming a room. My heart experienced what Viktor Frankl describes in  Man’s Search for Meaning  – love. It was like that huge, white light that accompanies a UFO in science fiction movies, only there was no light. It was more of a feeling. The chattering voices in my head went silent. I lay there floating in a sea of bliss, feeling nothing but the openness of my heart and the intense purity of this divine love.   One of the authors I read after Leslie’s death said love is the one thing that never dies. Love survives time and dimension and death and birth. This always sounded nice and I wanted it to be true. But not until last Thursday did I know for sure.

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 …

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       A Good Sport (cont.)   … The last time I rode a bicycle, my thighs hurt so badly after three blocks that I had to get off the bike and wobble home. I haven’t tried again. Some days my right arm can barely hold the weight of a dinner plate, so I’ve given up trying to bowl or play pool.    After several incidents of tripping over invisible bumps on the sidewalk and losing my balance while practically standing still, I started to redefine my persona. I buried the part of myself that was once able to throw a Frisbee the length of a football field. I became an observer, not a jock. I read books; I didn’t play soccer. I meditated and stretched. I made myself forget the beauty of a tennis ball hitting the center of my racquet and sailing over the net.   But when a certain hunky outdoorsman named Matt came into my life, I was reminded of forgotten parts of myself. When he gave me the tour of his house, I was mesmerized by the weathered punching bag that hung from his basement ceiling. He handed me a pair of boxing gloves and left me alone with the bag and my fears. And I beat the crap out of that thing. I stopped every few seconds, afraid I might pull all the muscles in my back or wake up the next day too tired to walk. But as the rage and determination and sadness and joy all poured out, I kept on punching. My face flushed and my body grew moist with sweat. My breath became labored. It felt like coming home. The next day I ached a bit, but it was that exquisite soreness that follows a satisfying workout.   Last week, I had dinner at my friend Felicia’s house, when her friend Sam said, “I swam in the Bay today. I’m training for the Alcatraz swim.”  “I biked for thirteen miles and then ran four miles around Golden Gate Park,” Felicia bantered back. “That’s longer than the triathlon I’m doing next month.”  “Oh, yeah?” I piped up. “Well I climbed a ladder today. I was helping Matt work on his boat and I had to climb a ladder to get up there.”    That confidence was still with me the day I shut the door to Matt’s house, accidentally locking his house keys inside. My apologies couldn’t make a spare set appear. His neighbors were out of town; his car keys and cell phone were trapped in the back bedroom.    We walked around the house like burglars staking out a property. The bathroom window was open a crack. My fingers tingled with anticipation.  “Let me climb in the window,” I said without hesitation. I knew I could fit through the open window. I just didn’t know how I’d do it.    Then, that lost tomboy inner-child of mine grabbed a black plastic bucket, threw it on the ground upside down, and stepped on top of it while leaning on Matt’s shoulder. I maneuvered my left leg through the open window and straddled the sill sideways.   “Now what are you going to do?” Matt asked as I dangled three feet above his blue-tiled floor.   “I may not be strong, but I’m flexible,” I said as I gripped his hand. “I can do this.”  My thigh scraped against the ridges of the sill as I slowly slid down the inside wall. My left foot landed squarely on the gleaming tile. I felt the grace of a perfect ballet stretch, the passion of an all-out karate kick, the delight of my ten-year-old self jumping down from our crabapple tree.  There may come a day when I will not be able to get up a ladder or slide across a window frame, but today I can. And as I massage the tender rainbow-colored bruise on my inner right thigh, I know it is the mark of an athlete.     

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 …

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       Regeneration (cont.)    …  When I was diagnosed with FSH muscular dystrophy, I was introduced to the word “degenerative.” Every doctor I met told me this was the nature of the disease. Every muscular dystrophy brochure used the word. Even when my neurologist said enthusiastically, “You’re doing great. You’re degenerating at the speed of a glacier,” there was always the understanding that loss of muscle would take place; it was just a matter of how much or how little. I always knew that to some degree my future body would be weaker than the present one.  For most of my life I have hated my body. It has let me down, taken away my ability to play tennis, go for long walks in the woods, carry a heavy bag of groceries. My body is disappearing on me – so slowly and subtly that I have been lulled into trusting its veneer of strength. I sometimes forget it is filled with invaders ready to attack whenever they see a moment of weakness, whenever they carry out a battle plan I don’t understand.  Lately, though, something has shifted. I don’t despise my body. I no longer curse its awkward gait or look with disgust at my thin right arm. I don’t apologize for a physique that is less physically beautiful than it would have been without muscular dystrophy. Instead, I hate the disease. I hate the misguided group of cells or genetic imprint or chromosomal mishap that beats down my body. I hate that it lives with me. I tell it to leave.  I look at my thigh now and speak to it as if it were a child: “Oh, sweetie, I’m so sorry this is happening to you.” I pour vanilla-scented massage oil into my palms and tenderly touch the sunken places of my body, sending them all my warmth. I pet my thigh with the same soft gesture I use on Lucy, the fluffy black cat I adore. I gather all the memories of love I have stored inside – the way I ooze with affection when I spend time with my nieces, the way I feel looking into the eyes of a lover – and I pour them onto myself.   *****  A few years ago, I had abdominal surgery. I prepared for it by listening to a meditation CD. A kind woman’s voice led me through a series of relaxation techniques. I was guided through every part of my body, slowly softening the places from my head to my fingertips and toes. I imagined myself in my ideal place of relaxation – sometimes staring at the ocean, sometimes lying on a hammock looking up at a sky full of autumn leaves. I visualized my healing taking place.  This was easy to do when I prepared for surgery. I imagined my sweet, skilled surgeon smiling down at me as I lay asleep on the operating table. I imagined all the people praying for me to recover. I said goodbye to my ovary that was to be removed and I thanked it for all it had done for me. I imagined waking up easily from my anesthesia, feeling no pain.  I listened to this CD three times a day right up to the moment I was wheeled into surgery. And, as I had seen in my mind’s eye, everything went perfectly.  As I recovered at home, I watched in awe as my body began to heal. I had only associated my body with degeneration, but here it was mending. Initially, I was unable to lie down in bed or sit very long in a chair because of the pain. My stomach was bloated. My incisions were tender and pink. I needed two canes to walk across the room. But every morning I awoke amazed at how much better I felt than the previous day.  I continued to envision changes taking place in my body. I saw all my beautiful, wise cells going in to repair the damage like a parade of white-uniformed nurses caring for a patient. I felt each breath bring in fresh air, circulation, and comfort. And then I imagined the next stage of my health:  me full of energy sitting in a restaurant with my friends laughing and sharing food.  After a couple of months I was back to “normal.” I walked with my usual limp but without the canes. I could sleep in bed without wincing, and my stitches disappeared. But I keep playing that visualization CD.   *****  Now, I imagine regeneration because I’ve seen it can be done. Instead of surgery scenarios, I lie down in the afternoon, close my eyes, and watch as all my muscles get larger and stronger. They intertwine like fingers until they are thick and solid. I envision a large, metal strainer going down my body removing all the specks of dirty, black disease. Then, I picture myself walking easily on a path by the ocean. I am talking with a friend and not even paying attention to each step I take. Sometimes I turn around and walk backwards as we chat, or I skip like I did as a kid. It is so easy, so effortless I feel it in my roots, down to my core. And as the meditation ends, I wake up happy and rejuvenated.  I know my body has the ability to heal itself. I know my disease can be cured. I know this as surely as I know my body is deteriorating and there is nothing I can do. Somehow I hold the paradox, knowing that both of these things are true. I never say my hopeful words out loud because everyone knows that muscular dystrophy is degenerative. And yet, when I close my eyes, there is a place just as real where I am as fluid as I want to be. There is a place where I am whole.

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 …

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