Controlled Fall Conversations: Chapter 6 “Shake-A-Leg”

“Push to the tennis courts and back across the grass,” Sue Hammond, wearing a baseball hat backwards, shorts and t-shirt, told our wheelchair mobility group. Craig, the fit, PT grad student intern, borrowed a chair and led what quickly became a race. Matt Malley, whose curly hair and mustache creeping on his upper lip made him look like a redheaded version of David Crosby, followed Craig. He and Sue would do a choreographed dance with matching spins and synchronized wheelies for the Open House. His buddy Craig watched everyone pass with a that look of, “Oh we’re going to race.” Round-bellied Danny Heumann, the best ping pong and tennis player, yelled, “It’s a miracle!!!” in his New York Jewish accent, reminding me of summer camp kids I’d known. Big John Pugh, a black guy with biceps the size of my head, twenty years older than the rest of us, drawled authoritatively, “No parking on the interstate,” at someone stopped in front of him. Carwile Leroy, from Charleston, South Carolina balanced his long legs and big feet over the grass. He would become my best friend.

I wheelied after Craig and Matt not wanting to catch my front wheels and end up flying off my chair Superman-style, though closing on the return leg, I shot myself over backwards, landing on the grass to Matt’s honking laugh. I righted my chair before the brown brick four-story building, previously a convent, with weeds poked through tennis court cracks. I felt a sense of home at this holistic center, where Rolfing, Feldenkrais, Massage, Dance and Body Movement formed the heart of treatment, complemented by traditional therapies. Sitting, back to my chair, I reached behind me to the bend from seat to footrest and lifted myself back in, a newly-mastered move I couldn’t have imagined a day earlier. I was back in the race.

At weight training Paul Lonzak looked like a cross between a cop and a power lifter with a small, dark mustache and arms that couldn’t rest at his side. After my ten-minute baseline test on “The Arm Ergometer,” a hand pedaled stationary bike, he noted distance and felt for my pulse. “What are your goals for the summer?”

My stick arms poked out of a white, extra-large, cotton t-shirt, the fabric bunching around my withered frame and para belly. I answered, “I don’t care what you do to me. I just want to get better.”

He raised his eyes from his notes, laughed and said, “You have no idea what I can do to you.”

“I don’t care. I just want to get better.”

He took my pulse again to gauge recovery and said, “Well, that’s a starting point.” I didn’t mention that I felt a bit sick, but Paul took me at my word that summer. Lying on the bench press I asked, “How many more?” Watching the bar move smoothly he said, “Two more,” which I did, maintaining consistent form. He said, “Two more.” I pushed hard feeling a bit of pride as I straightened my arms on the last one. “Two more.” I lowered the bar and pushed. It stalled two inches above my chest. Paul extended just his index fingers under the bar to help. “Keep pushing.” The bar moved. I straightened my arms, locking my elbows, done. “Two more. Resist. Slowly,” he said. I resisted, expecting the bar to pin me to the bench, then bounced it off my chest pushing hard to maintain momentum. It stalled again. “Keep it moving,” Paul said, two fingers below the bar. I exhaled hard through pursed lips. “Stay strong,” Paul said. My arms burned with numb pain.

“Two more.”

“I can’t do more.” 135lbs of iron swayed above me.

“I’ll help.”

My arms buckled more than bent. “Slowly.”

“This is the best I have.” Paul helped only enough to keep the bar moving. Tears streamed into my hair, itching as they went. When I finally locked out, Paul pulled the bar onto the rack and cackled, “You told me I could do whatever I wanted,” as I hugged myself hoping somehow to stem the pain. “That was really good,” he said turning serious.

Another time he made me climb the white, knotted rope from the floor to the pull-up bar at the top of the power rack, at least seven feet above the ground for the hour-long session. Wide grip and narrow grip pull-ups, chin ups, negatives, where I lowered as slowly as I could and he helped me back to the top before encouraging me, “Slowly, slowly” until exhaustion mingled with fear that I’d fall directly to mat.

Regarding the heart of the treatment, Med Student Carwile often said, “This touchy feely stuff drives me crazy. There’s absolutely no scientific evidence to support it,” but every time Rolfer Deborah Hope, whose wild red hair, mystical blue eyes and layers of wispy clothing could have cast her on Bewitched said, “Breathe into this spot on your back,” I breathed into it with everything I had. Medicine didn’t have a solution for me, so I had to seek answers from each experience. I had to believe, stay in the fight and say yes—not let the string of growth and opportunity break. The old me would have agreed with Carwile, but I needed to find my power somewhere I’d never had the guts to look.

I heard Shake-A-Leg founder Harry Horgan’s clomp, grunt, swish, clomp, swing-through-gait before I saw him. He looked like a Kennedy with curly blond hair and a face meant to sail into the wind. Harry didn’t move fast, but he was upright, a model for the rest of us. When he and his wife Susie went to a restaurant or the movies he walked. In their wedding photos, he stood for the ceremony. Harry’s assistant Marilyn had taken John Pugh and me to get measured for our braces the first day, but they wouldn’t be ready for a while.

“I need to walk,” I said to Craig. I had walked on my knees between lowered parallel bars, but I said, “I need to be upright. What if we strap those pillow polo mallets to my legs?”

“That might work. Let me check with Sue,” They talked in a corner.

“So, I hear you want to walk and you think those mallets can splint your legs?”

“I think it’s worth a try.”

“Okay, but I’m going to be in front. Craig will be behind. We’re going to make sure this is safe.” With ace bandages and athletic tape they strapped my legs out straight, drawing a crowd of onlookers.

“Okay, you ready?” Sue asked, “To stand, grab the bars and push yourself up.”

I stood and the mallets bent, resulting in a semi-squat, making my job more difficult. I shifted my weight left, lifting my right shoulder and hip to swing my foot, which stuck to the floor.

“Try again,” Sue said, spotting by the handholds of the six-inch wide PT belt. I lifted hard and my foot trembled.

“Try the left leg,” Sue said. I reversed the process and my left leg swung in a step. A murmur rose from the crowd. Sue assisted my right foot and I stepped again with my left. By the end of the seven-foot parallel bars sweat dripped from my face and my arms shook.

“I’m done,” I said, sitting. The crowd clapped.

“That was really impressive. You had some movement that will grow when your braces arrive, but that’s the last time. We don’t want you to get hurt.” When my braces finally arrived, they looked like the ones the kid on my kindergarten bus had worn—leather straps, steel bars and a plastic foot mold.

Sue said, “First we need to straighten the braces so that this little metal sleeve locks the knee.” I extended my leg as far as I could with my arms and struggled against my leg muscles.

I said, “My legs just don’t want to stretch out.” Sue helped. She said, “The hardest part is getting upright. You’re going to start with your crutches out to the side, move your weight forward, push with the crutches and as you move up bring them closer to you until you’re standing.”

I said, “It’s going to be hard,” feeling like I couldn’t even lean forward onto what I’d always known as Jerry’s Kids crutches.

“We’re right here,” Sue said. She and Craig assumed the ready position.

“Here I go,” I said, trying and ending up slumped in my chair. “Well that didn’t work. I was worried that I’d go straight onto my nose.”

“We’re here. There’s no way that you’ll end up on your nose.”

“Okay, right. Here we go.” I pushed, feeling as though I had fallen into a trashcan bum first, and now was trying to pull myself out of with my legs above me. Sue helped. “Move the crutches closer to you.” I stood. Sue held the belt and I shifted constantly looking for balance.

“Let’s get you in between the parallel bars,” Sue said, “They don’t move like your crutches so you can concentrate on walking. You can do the swing through the way Harry does or move one leg at a time. At your level the swing through would be easier.”

“Well, let’s see how I do,” I said, “I want to walk one leg at a time.”

“We’re here to help you do whatever you want.”

Craig added, “You’ve been walking one leg at a time on your knees all summer. I don’t see any reason why you can’t do it.”

The parallel bars anchored me, making balance much easier. My right foot moved, but not in a complete step. Since I couldn’t feel, I only knew by watching.

“There you go,” said Sue, “That’s great. See if you can swing your foot all the way through.” I struggled again to swing my foot another 8-10 inches, but only made about four.

“That’s still good,” Sue said, “On the next, try to really lift your hip.”

I lifted harder and my foot swung, though it still fell short of a complete step.

“See that’s better.”

“Better, but not quite there.” I lifted my hip hard and halved the distance to the complete step. “Closer,” I said. “One more time,” and I lifted finishing my first step with four tries. “Let’s see how the left side works.” My left foot swung completely through.

“There you go,” said Sue, maintaining her hold of the PT belt.

“Now I have to make the right foot work the same way.” I lifted hard and swung my foot half way there. “Why do I have such a hard time with the right side?”

“It could be anything. It could be that you’re just stronger on the left side. It could be that you have a bit of scoliosis. It could just be that it will take time.” I lifted hard and made the full distance. One trip to the end of the parallel bars felt like a set of bench press with Lonzak.

I lowered myself slowly. Contact with the chair sprung the locks and my knees bent. My chest heaved like I hadn’t breathed the whole time. “How are we going to do this? This is supposed to be my last PT session of the program, but I need to learn how to walk.”

“Don’t worry,” Sue said, “I’ll be here. I’m happy to make the time.”

“I will too,” Craig said.

“Thank you,” I said, “I came here to be upright fifty percent of the time. I need to learn enough so that I can continue on my own. I really appreciate your help.”

Then Bernie Telsey and Bobby Lupone from Manhattan Class Company, an Off-Off-Broadway Theater, showed up to put on a play. Rumor was that Bernie had been Danny on the Partridge Family. He denied it, but we were skeptical, even though it wasn’t true. He would become one of the biggest casting agents in the world. Bobby, a Juilliard trained dancer carried himself fully erect. He’d been the original lead on Chorus Line. Bernie wore shorts, a t-shirt, suit vest and a scarf. Bobby wore shorts with socks. His white legs contrasted with the black sneakers. They took over, saying things like “Fab.” I still vibrated from walking when Bernie approached me at lunch, “Do you want to audition for the play?”

“I’m an athlete. I don’t really do that kind of thing. Plus, I came here to walk. I need all the time I can get.”

“We can make it work so that you can do both. What would it hurt to do both?”

“I’ll audition, but I’m not good at this kind of stuff.”

By the time I made it to the little room off PT I’d decided to have fun. Bernie, Bobby, Harry and Susie Horgan and a professional actress named Gillian were there.

“Take a moment to look through these short monologues and then we’ll have you read them to us,” Bobby said. One guy felt free when he hopped into his airplane, an alcoholic lamented the life he’d led, plus about five others. I let myself play, thinking it could be fun to be an alcoholic on stage.

“That’s great,” Bobby said.

I left and took the elevator up one level for my Feldenkrais session. Just as we started there was a knock on the door.

“Could we get you to read again?” It was a woman working with Bernie and Bobby. I looked at Laura. “You should go,” she said.

“Is there something more that I need to do?” I asked Bernie.

“Yes. We would like you to read a scene with Gillian,” who stood to shake my hand. Shoulder length red hair framed her friendly, attractive face.

“It’s nice to meet you,” she said, “We’ll just go back and forth on this scene. Take a quick look at it and we’ll start.”

I read it a couple of times, “I think I’m ready,” I said. I’d be Perry. Gillian would be my girlfriend. I’d had a spinal cord injury and I wasn’t very happy about it. She was visiting me in the hospital.

“I’ll read from here,” Gillian said, “You face me. Don’t pay attention to the rest of this group.”

“Okay.”

She started in a bright cheery voice, “Hello hansome, how are you doing today? Do you feel any better?”

“No, I really don’t and I don’t really care. You know that you don’t have to visit me just because I’m in this god forsaken place.”

“I’m not visiting you because I have to. I’m visiting you because I want to.”

“Well, you really don’t have to. I don’t want to be your obligation.”

The scene continued in a similar vein. We finished and I looked at Bernie and Bobby.

“That was great,” Bernie said and ambled toward me, “I liked how you really made her feel uncomfortable. Can I get you to give her just a glimmer of hope?”

“I can try,” I said and we did it again.

“That was great,” Bernie said. “What would you say to being the lead of the play?”

“Really? That’s not what I expected. That could be cool. As long as I can still walk, I’m in.”

They pushed the tables against the wall for rehearsals, which were both tutorials and initiation. Bobby assumed a Germanic accent as we did scenes in gibberish. I could only muster something that sounded like I was deaf. They made me try to convince Gillian to leave the room without speaking. As Gillian’s new daughter and husband, a private detective novelist, watched from a corner she entered my hospital room, sat on my lap and gave me a kiss hello. Suddenly there was another tongue in my mouth and I snapped my head back.

“What, what, what?” Bernie broke in his high-pitched Jewish director parody voice. “What’s going on here?”

“Sorry,” I said, looking at her husband, “I didn’t think it would be a real kiss.”

“What, can’t you act?” said the Jewish director, growing bigger.

“I can act. I just didn’t realize…”

The penultimate night Bobby pitted me against the rest of the cast in a competition to be the most convincing. Annie, Harry’s aunt and our dorm mistress judged because she loved everyone. We traded winning scenes until it was tied two to two with an ice cream to the winner, but no more play because the ending hadn’t been written. Bobby turned to me and said, “Finish the play.”

I knew to stay in the moment, letting the staring eyes give me inspiration. I said, “I’ve learned it. We’ve all learned it. We don’t know where life will go or what it will bring. Tragedy can bring great opportunities and gifts. Friendships, perspectives, new beginnings. Just do it. Just live. Just love. Just begin.”

“That’s it,” Bobby said, “That’s the ending.”

Annie turned her angelic face to me and said, “Winner,” only I couldn’t remember what I’d said, I never got that ice cream and I would have to stand to give my monologue, in front of an audience, without a spot.

Back at Eaglebrook, I’d decided I hated public speaking at the Winter Sports Banquet when I had attempted to present a gift to our speaker, but forgot everything I was supposed to say. Now, I peeked around the Portsmouth Middle School Auditorium curtain as five hundred people entered taunting myself, “What if you forget your lines? … What if I totally go up and sit there frozen in front of all those people?” The truth was that Bernie, Bobby and Gillian had prepared me so well I couldn’t fail. Acting replaced the feeling of being at the start of a ski race. I had to prove that nerves would bring me to greater heights.

The curtain rose and I felt embraced by the audience. Gillian sat on my lap and slipped her tongue into my mouth, our moment in front of five hundred people.

Finally, in the middle of the stage I locked my wheels, straightened one leg then the other, positioned my crutches slightly behind me and thought, “Be strong, slow and smooth.” Wearing a blue Club Midd t-shirt, khakis that threatened to slide off my now non-existent butt and white with black and red Asics running shoes I climbed from the trashcan’s bottom to teetering on the edge—then push…catch three times, rising and ratcheting the crutches closer to me. Any imbalance between left, right, forward, back could drop me to the ground. I stood. I stared into the audience. My parents hadn’t seen me upright in eight months and probably thought they never would. Then I delivered my monologue. Applause erupted. Gillian bowed last then swept her arm toward me. If I bowed, I would fall, so I dropped my head as far as I could then raised it to the audience, with a big smile at how far I’d come.

To finish my summer I raced my first 10k, borrowing the stainless steel racer that Craig had used on our weekly jaunts to the main road. Carwile borrowed a similar one. In sweatpants and t-shirts, we assembled behind the three-wheeled racers in tight lycra suits and aerodynamic helmets. Tom Foran won. I wouldn’t meet him until that winter. Chris Egan, Harry’s high school friend and the resident photographer stayed with Carwile while my father accompanied me. Runners swelled around us offering words of encouragement: fast ones, slow ones, fat ones, skinny ones, like a Dr Seuss book. We were last by the time we reached the bottom of the big hill. My father asked, “Do you want me to push?”

“No. I need to do this myself,” but struggled so slowly I’m sure it killed him not to help, finishing 6.2 miles in an hour and ten minutes, close to fifty minutes slower than Tom, the fastest wheelchair. Carwile and Chris followed a couple of minutes later. I’d never been so tired or at peace.