Galli's Survival

San Diego — Last December Todd Galli made a list he entitled "Things I Want to Accomplish in My Life." Dissatisfied with how that sounded, he started again with "Things I Will Accomplish in My Life." At the top of the list Galli wrote, "Be a father," followed by "Get married," followed by "Learn to pilot a plane," followed by a great many other things. The list was the sort any young man about to graduate from college, contemplating his future, might compose.

"It's kind of hard for me to get dates, so the first two things on the list were necessarily the most difficult," Galli says.

But getting dates is not the first difficulty Galli has confronted. When he was three years old he fell down and couldn't get up. The muscles in his legs went into spasm. By the time he was five, Galli was a national poster child for the Muscular Dystrophy Association. Of the 40 diseases labeled muscular dystrophy, Galli has its most aggressive and lethal form, Duchenne muscular dystrophy (DMD), an inherited disorder, at present untreatable, which causes gradual atrophy of muscle tissue throughout the body. Found almost exclusively in males, DMD first weakens the muscles of the pelvis, upper arms, and upper legs. As DMD progresses, other muscles, like those involved in breathing, cease to function.

"But it's my heart, the heart muscle," Galli says, "that will kill me."

Not many boys with DMD survive into their 20s. Galli is, in his words, "living in the red zone." Since he was ten, Galli has made his way toward the red zone in a series of wheelchairs. His Carlsbad parents tried hard, he says, to treat him like any other boy. He was expected to attend school just like his sister and two brothers. He went to elementary, junior, and senior high school in North County. He managed several of his high school's sports teams. He was surrounded by friends who didn't seem to notice that he was in a wheelchair.

"I remember once when I was in high school, managing the football team, and I started having trouble breathing. My lungs needed to be suctioned out. And these two big, macho football players came over and suctioned out my lungs as if it were no big thing, as if it were the most natural thing for them to do. These two big strong guys. The sort of guys you don't normally think of as being particularly gentle or caring."

DMD's damage to the diaphragm results in frequent respiratory infections. After a severe bout of pneumonia in 1995, Galli's lungs ceased to function, and, after deliberating for four days, he opted for a tracheostomy and ventilator. He has nearly died three times, and so the ventilator, clicking and sighing on the back of his wheelchair, is an inconvenience he takes in stride. He cannot cough, however, and so his lungs must be suctioned as often as 20 times a day. The procedure is performed by any of the four nurses who care for him around the clock.

DMD, nurses, the wheelchair were such constant presences in his life that for a long while Galli wasn't much interested in hanging out with other disabled people.

"I suppose people in wheelchairs reminded me of myself, and I didn't want to be reminded of myself. That image of not being able to move. When I was in high school, if I saw someone else who was in a wheelchair, I wouldn't make any effort to go up to them or talk to them or make friends with them. My mother wanted me to go to all these muscular dystrophy events, but I never wanted to go. I guess I didn't accept myself. That took time. It was a matter of maturity."

Part of Galli's maturation took place at the Christian Club at his high school. Raised a Mormon, he'd drifted away from the church by the time he was 12. At Valley High's Christian Club, he felt a sense of belonging he had not felt elsewhere, and it was through the club that he began attending First Presbyterian Church of Oceanside, where he remains an active member.

"My faith has definitely strengthened me. There was a time when I was in the hospital for two weeks. I couldn't talk. I could only just lay there. And outside my window was this tree that I'd stare at. The tree reminded me of several verses in the 14th chapter of Job. 'There is always hope for a tree: when felled, it can start its life again; its shoots continue to sprout. Its roots may have grown old in the earth, its stump rotting in the ground, but let it scent the water, and it buds and puts out branches like a plant newly set.' Those verses gave me strength.

"Church has helped focus my faith. I do a devotion every day. I pray four to five times a day. I won't work on Sunday, not even homework. That was sort of rough when I had finals, but somehow I managed to do it."

Like the obstinate tree in Job, Galli asserted himself in the world. He graduated from high school and went on to complete a degree in kinesiology, the study of human movement, at San Diego State University. As graduation approached, he began to formulate his future. After he made his list in December, Galli spoke with Brian McCann, a friend he's known since elementary school. McCann now lives in Oregon, where he studies business. Galli told McCann that one of the things he planned to accomplish was climbing a mountain. McCann told Galli he wanted to help.

In addition to the equipment and provisions an able-bodied person would require for such a trip, Galli will need a special wheelchair, four nurses, a doctor, two pack animals, and, for his ventilator and suction device, 20 large batteries. Galli and McCann have already found one nurse interested in the project and a mechanical engineer who's eager to design the wheelchair. To secure the money and other volunteers for the climb, the two young men have established a nonprofit organization, Man on the Mountain. On Galli's behalf, Kelly's Print Shop in Carlsbad has produced, free of charge, a slick Man on the Mountain brochure.

"The day I went to pick up the brochure," Galli says, "there was a woman at the shop who kept staring at me. Finally, she came up to me and asked where I got the tray that fits onto the front of my wheelchair. We started talking, and I told her that I planned to be the first person on a ventilator to climb a mountain. She told me that she had a 17-year-old son who'd been paralyzed in a surfing accident. She said he never wanted to leave the house, never wanted to see anyone. She asked me if I'd come and talk to him, to encourage him. I told her I'd be happy to. I gave her my phone number. But she never called. I know so many disabled people who just give up."

Galli plans to climb a portion of the Sierra Nevada range in mid-July. Because of his ventilator, he probably won't be able to ascend beyond seven or eight thousand feet. A few months ago while McCann and Galli were searching for a potential site for their climb, they drove through Sonora, California, not far from Yosemite.

"We came up over a hill and before us was this enormous valley. It was one of the most beautiful things I've ever seen in my life. Trees as far as you could see, all the way to the horizon. I could have stared at it for days. The entire valley was filled with green, and I was filled with this incredible sense of peace.

"I hope to find that feeling again at the summit of my climb. Looking out, seeing green forever. All that nature. Everything's right. Everything's as it should be. Everything's perfect and peaceful. Not a care in the world."