For a degenerative disease, optimism is the best medicine

He doesn't remember the first time he was walking and his legs gave out, just that he fell more and more often the older he grew. He doesn't remember when the shortened tendons in his legs began to prevent him from walking flat on his feet, forcing him to lope awkwardly on his tiptoes. He can't remember the exact day that he could no longer get around without a wheelchair.

Pablo flips through his sketchbook. He said art is his best subject and he got an A+ last semester. Photo by Lauren Orsini.But one thing Pablo Eusebio does know is that his future is bright.

The 16-year-old spends a lot of time thinking about the future. His self-concocted nickname is “Mr. Day,” because he constantly finds himself daydreaming about things he wants to do tomorrow or a year from now. 

First up? Definitely college. He's still trying to choose between Syracuse University and University of Maryland, depending on which college's sports team he likes better. Later will come the singing or rapping career, which he already trains for each day after school at the Boys and Girls club, where he makes rap videos with his friends. But Pablo's greatest dream is to make the world a better place for sick people. He's thinking about his aunt, who died last year of breast cancer after she couldn't afford the treatment. 

“I want to help people who are really sick,” he said. “Not just with MD [Muscular Dystrophy] like me, but really sick.” He does not count himself among those people.

The medical community disagrees with him. Pablo was born with Duchenne's Muscular Dystrophy, an illness caused by a genetic anomaly. It's 100 percent fatal.

The disease began to affect Pablo when he was 6, weakening his legs and pelvis and paralyzing him from the waist down by adolescence. MD has already started to move upward in his body, curling his fingers inward and limiting the mobility of his arms. In the final stages of the disease, which usually begins in the late teens, Pablo's heart and lungs will become too weak to sustain him. Rarely do victims survive past their early 20s. 

Pablo chooses not to think about it. He says he doesn't like stuff putting him down. He doesn't worry about what he can no longer do, even as the list of things he can still do continues to grow shorter. No, "Mr. Day" spends his time dreaming about what's still in store for him.

“I keep looking forward to the future,” he said.

He is fully confident that a cure for MD will be developed in his lifetime. He talks excitedly about how Obama put $9 billion towards stem cell research. While he doesn't follow politics, this alone makes him a fan of Obama.

“They're already trying an experimental medicine on the ones who walk still,” he says. “If it works, they'll make it available for everyone.”

Until a cure is developed, Pablo is continually surrounded with signs of his own mortality. Showing off his room, Pablo all but ignores my curiosity about his hospital bed and manual wheelchair, instead directing my attention towards his prized Xbox and Nikes.

“If you look over here it looks just like a normal room,” he said.

Every morning his mother, Gisella Soriano, helps him to stretch out his arms and legs in the hospital bed before he gets into his wheelchair. The cheery orange walls of the family's apartment are uniformly scraped around 4 inches above the floor, scuffed from the wheels. Even so, Soriano said that the family chose this apartment because it was the most wheelchair-accessible location they could find. She hunted for a year before finding the first floor Anacostia apartment the family calls home. The family, originally from the Dominican Republic, is moving again soon and she cringes to think of the search that will ensue.

Until then, Pablo navigates the city in his wheelchair. Because he doesn't have his driver's license yet, his commute to his most frequented haunts — school, his mentor's house and the Boys and Girls Club — consists of wheelchair-accessible Metro trains, buses and ramps. Pablo doesn't recall experiencing much prejudice due to his disabilities while traveling. On the contrary, he says people are especially nice.

“There's always somebody who will get upset. But when I get on [or off the bus], somebody will say, 'Don't be rushing, he's got to take his time,' ” he said.

Seated at his kitchen table, Pablo watches TV. His wheelchair is too large to fit in the living area. Photo by Lauren Orsini.Pablo's mentor, 24-year-old Ed Martin, echoes this statement. When the two visit restaurants together, Pablo gets the VIP treatment.

“The best service I've ever gotten was with him,” said Martin. “We'll go to a packed burger place and all of a sudden, people give up their seats and the staff is super accommodating. People see this young person confined to a wheelchair and something happens where they want to be helpful.”

Martin notes that no matter how good the service, Pablo takes it in stride. He doesn't act like he's treated any differently. He knows Pablo is an outgoing, confident kid, but he guesses the nonchalance comes from people treating him well very often, a side effect of being in a wheelchair.

When Martin signed up for Mentors Inc., he had no idea the mentee he was assigned to would be handicapped until the first time the two met. Martin was nervous. He didn't have any friends or relatives with disabilities. A baseball and football fan, he had listed active sports on his Mentors Inc. application and had planned on playing them with Pablo. Now what were they going to do together?

“I was worried, but after I started talking to him and getting to know his likes and dislikes, I knew off the bat that this would be much easier than I expected,” he said. “This should have been a challenge for me, but Pablo didn't make it that way.”

Added Martin, “He's just a normal kid who happened to be in a wheelchair.”

It turned out Pablo likes sports as much as Martin, and the two even have the same favorite baseball team, the Red Sox. While Pablo can't play baseball, he and Martin love to talk about it, watch it on TV and play sports video games together.

Martin describes their relationship right now as less of a mentor/mentee one and more of a friendship since he gets as much from Pablo as Pablo does from him.

“I'm supposed to be the mentor but sometimes I get strength from him," Martin said. "During a rough day, I think of the challenges he faces. If something in my life goes wrong, it's minor next to things he goes through on a daily basis. I look up to Pablo. Our respect is very much mutual.”

However, Pablo doesn't consider his lot to be more difficult than most. Growing up in Southeast Washington, D.C., he worries more about being mugged than about being made fun of for his disability. Being in a wheelchair, he said, hasn't stopped him from receiving the “same looks people give everyone else around here.” He feels more at home in Martin's Ballston neighborhood.

More than anything else, Pablo's steady stream of girlfriends reminds him how little his illness matters. A self-proclaimed “ladies' man,” he has had six girlfriends and says his current goal is to date an older woman. His strategy for dating is: Go with the flow. When a girl picks on him more than other guys or spends more time talking to him, he knows it's a good time to ask her out.

“Girls don't look at who you are on the outside, just the inside,” he said. “They care about who you are, not what you aren't.”

When he takes photos, Pablo makes sure to angle the wheelchair out of the image. He doesn't see it as a part of himself. Photo by Pablo Eusebio.It's a reflection of how Pablo sees himself. He doesn't consider the wheelchair to be an extension of his body but merely an accessory. When he takes photos of himself, he takes care to angle them so the wheelchair isn't visible in the photo.

After all, to Pablo, the chair is just a temporary thing. He doesn't believe he'll be sick forever. He watches TV shows like “America's Best Dance Crew” and plays video games like Madden as if he's filling out a checklist of things he wants to do when he gets out of his wheelchair. Though the odds are against science finding a cure in his lifetime, he remains positive.     

“I won't need my wheelchair when I'm an adult. I'll be walking by then,” he said. “Progress to a cure advances more every year.”

For a teenage boy who takes three steroids and a heart failure preventative every morning, this optimism is far from naive.  It's a survival mechanism, keeping the disease from overwhelming him at a faster rate. Already, he has more movement in his arms and hands than most MD sufferers his age. As he sits on the sidelines at the local skatepark where his friends play, Pablo takes out his sketchbook. Here, "Mr. Day" scribbles quotes and poems, dreaming of the things to come.