From Chicken Soup for the Volunteer's Soul

If I Can Move I Can Win

Pick battles big enough to matter, small enough to win.

Jonathan Kozol

As retreat leader for the staff of St.Vincent’s Hospital in Indianapolis, we participated in a wonderful day-long workshop entitled, Creating Healing Communities. In the afterglow of the closing banquet, two nuns asked me to join them later that evening. After working all day, completing a four-course meal and sitting through after-dinner speeches and awards, I wasn’t enthusiastic at all—but it’s hard to say no to nuns.

Sitting knees to chest in their tiny car, I arrived at New Hope, a separate hospital-affiliated facility for the profoundly impaired. Sister Francine motioned for me to enter the sprawling 140-bed building from a side door so she could help a resident who managed to get his wheelchair stuck in a soft shoulder along the edge of the sidewalk.

“How ya doing, Eddie?” she called.

Eddie spoke slowly. “Reeeal goooood, Sister.”

Francine rolled him inside. As we continued down the hall she told me that Eddie was the third sibling in his family to suffer from Friedreich’s ataxia. This disease of the nervous system reveals itself in late childhood, causing paralysis and affecting speech. About a decade earlier, before state-of-the-art genetic identification and testing, it was impossible to tell in advance who would get this disease. Eddie’s three siblings, ranging in age from their early twenties to mid-thirties, all lived at New Hope.

As we walked down the hall, Sister Francine stopped to hold and address each person we passed. She greeted a severely retarded, hydrocephalic young woman who blew in Sister Francine’s hair. Francine blew back. The patient held me and blew on me. I blew back, too. Next, Francine said hello to a young man who was profoundly impaired following a motorcycle accident. Nearby, a former rock musician silently moving his lips while tapping his head rhythmically, as if to an imagined tune, was the next recipient of Sister’s salutation.

Sister Francine saw me shake my head, although I thought it was done imperceptibly. She said, “Whenever I go away, even for just a day, I see changes in them. Oh, they might be microscopic compared to the changes you see in ordinary people. When I see how they fight to keep moving, compared to the ease with which I do things, I feel as if I’ve accomplished nothing in comparison.” She continued our conversation as we slowly made our way down the long hallway. “I look at what I start with and where I am. Then I look at them and how they’ve learned and moved, and it makes me humble.”

I thought, She sees with eyes of joy, and I look in horror and sadness.

“Come meet the Hoosier of the Year,” Sister said enthusiastically, introducing me to John, a thirty-two-year-old man with cerebral palsy. John had severely limited functional use of his body, and he couldn’t walk or speak clearly. He had required the use of a wheelchair since the age of five. Seated in the wheelchair next to him was Susan, his wife of two years, who also had cerebral palsy. Every resident in the New Hope facility, their families and the entire St. Vincent’s community attended their wedding ceremony.

The governor named John Hoosier of the Year for his contributions to the Muscular Dystrophy Association (MDA). After his closest friend at New Hope died of the disease, John decided to raise money for the organization. He inspired people to pledge pennies, nickels and dimes for every mile that he could “run.”

John ran those miles the only way he knew how—backwards, in his wheelchair. Having regular rhythmic control of only his left foot, he moved inches at a time, pushing his wheelchair backward with his toes. He pushed himself through the streets of Indianapolis for hundreds of miles, raising more than thirty-six hundred dollars toward research into muscular dystrophy.

John may not be able to speak very well, but he does have the ability to move his finger across a custom-built alphabet board that attaches to his wheelchair like a tray. As I sat on his bed watching him briskly move one finger with amazing dexterity, he swiftly pointed to each letter that comprised the words he wanted to communicate.

He told me that one day, while he was out on the road, away from New Hope, without the message board on his racing chair, he met some people who thought he was running away. John became frantic because they wanted him to return to the home, but gesticulating uncontrollably in his desperate attempts to speak, he only frightened them even more. In the two years it had taken him to raise the money for MDA, that was the only time he failed to complete his mileage for the day.

As I continued to watch John form new words, his expression became suddenly serious as he said, “I . . . have . . . cancer.”

I glanced over at Sister Francine. She nodded her head.

“Yes, it’s true, Carl. A month ago John was diagnosed as having Hodgkin’s disease.”

Well aware of the magnitude of his diagnosis, I sat in disbelief. How much does a person have to deal with in one lifetime?

John kept moving, but his biological limitations ambushed him once again. He would not be defeated. He intended to keep moving, through this new leg of his journey. Pointing to his arm to show me the site where they administered his chemotherapy, he laughed and said, “My crew cut is only partly from the barber.”

“Are you going to complete this race, John?” I asked.

With his rapid-fire forefinger he smiled and responded emphatically, “If I can move, I can win!”

Carl Hammerschlag, M.D.

[EDITORS’ NOTE: For information on the Muscular Dystrophy Association—USA, contact 3300 E. Sunrise Drive, Tucson, AZ 85718; 800-572-1717; Web site: www.mdausa.org.]

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