Stronger: Three Stories of Living with Muscular Dystrophy

By Lauren Orsini

Unlike other common diseases, Muscular Dystrophy doesn’t have many spokesmen and women.

That’s because so few victims make it to adulthood. As a result, according to Parent Project Muscular Dystrophy, most people have never even heard of the disease.

Yet it is one of the 10 most common genetic diseases. It takes more than 100 different forms. It is frequently fatal, often by young adulthood. And there is no cure.

Every year in the U.S., 500 newborns are diagnosed with Muscular Dystrophy. As they come of age, they often find the ordinary experiences of growing up – school, friendships, dating, hobbies, college plans, hopes and dreams – compete with the realities of physical limitations and the knowledge their lives will likely be shortened by the illness. According to the D.C. Muscular Dystrophy Association, there are about 50 people in the tri-state area who live with the disease. Here are the stories of three of those young people.

Pablo’s story

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.

But one thing Pablo Eusebio does know is that his future is bright.

This 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 and Maryland, depending on which college’s sports team he likes better. Later comes 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 begin 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 getting 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 says excitedly that 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 me around his room, Pablo all but ignores my curiosity about his hospital bed and manual wheelchair, instead, directing my attention towards his prized X-Box and Nikes.

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

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 about four 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 one 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. Since 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.

When Pablo’s mentor, 24-year-old Ed 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 him 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 liked sports as much as Martin, and the two even had 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.

Pablo doesn’t consider his lot to be more difficult than most. Growing up in Southeast D.C., he worries more about being mugged than about being made fun of for his disability. Being in a wheelchair, he says, 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 in Arlington, Va..

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 this: 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.”

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 that takes three steroids and a heart failure preventative every morning, this optimism is far from naïve. 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.

Brandi’s story

“Pablo’s got a good attitude,” says Brandi Hawkins. “Better than mine.”

Though she’s only a year older than Pablo, Brandi towers over her friend. At 5-foot-6, the slim teenager is the average height for a woman – when she’s standing tall, not sitting in her wheelchair.

Brandi’s wheelchair is reserved for attending school and traveling long distances. When she gets home to the family’s Arlington apartment, she parks the chair by the front door and tiptoes from room to room, her tightened calf muscles forcing her to lope like a gazelle.

The 17-year-old has Nemaline Myopathy, a strain of Muscular Dystrophy that affects the respiratory system. It’s only mildly degenerative and has gotten only slightly worse since its onset during her infancy, so it’s unlikely to affect Brandi’s life expectancy. But the teenager doesn’t have much time to sit around and count her blessings when she’s dealing with a neuromuscular illness on top of the regular trials of being a teen.

“I’m comfortable with myself,” she says, amending her earlier statement about Pablo’s and her attitudes. “But I don’t like the fact that I have to go through all this stuff.” Her emphasis on the word “I” is palpable.

Brandi is wearing a teen girl uniform –navy blue Pink brand short shorts, hoop earrings, and a hot pink shirt that says “hear no evil, see no evil, date no evil.” Her tall, slim frame of just 96 lbs., thanks to weakened muscles, fits perfectly into our culture’s standards of beauty. She has considered modeling but thinks it might require more energy than she had to offer.

Instead, she fulfills her interest in beauty in another way: taking cosmetology classes at the local career center. She cuts hair off of mannequins’ heads, painstakingly applies make up to their plastic faces, and sometimes even practices on her friends.

“Nicole just let me do a two-layer hair cut and her eyebrows,” she says of one of her friends.

None of Brandi’s school friends are disabled. This isn’t odd at all for Brandi, but is a little frustrating when the other girls just want to walk around the mall all evening – something Brandi would have to bring her wheelchair in order to do.

We’re sitting in her room. Brandi’s décor reminds me of my own teenage sister’s room. The walls are adorned with flattened birthday balloons, hand-drawn signs from friends, and magazine pull-outs of rap stars, singers, and actresses. Several are of Rihanna, Brandi’s idol.

“She’s a strong woman. I want to be like her one day,” Brandi says, looking at the photo.

Behind the purple and pink Bratz-themed bed though is enough medical equipment to fill a hospital room. Brandi’s ventilator, the size of a nightstand, improves her breathing at night. Twice a day, she uses a nebulizer to remove mucus from her throat and clear her airways. Soon, she’ll need a special nebulizer to fit on the back of her wheelchair, or else risk getting a tracheotomy, a hole in her windpipe to provide a direct airway.

“There’s a girl at my school who had a ‘trach,’” she says. “I’ve never seem it though, because she always wears a scarf to hide it.”

Though there are other disabled students at her high school, Brandi worries about being labeled “the girl in the wheelchair.” Her junior year of high school was the first year she started feeling the strain of walking from class to class, and started using it at school.

“A lot of people were shocked. They didn’t even know something was wrong with me until this year,” she said.

Brandi guesses they probably thought it was a temporary thing when she came back after summer vacation in a chair, but as she continues to use it, she is concerned it is becoming part of her identity. Her friends say that when people ask about her, they ask how “the girl in the wheelchair” is doing. It’s painful for somebody who used to be known as “the loud and funny girl.”

“Boys don’t go for the girl in the wheelchair,” she says. “No one has ever told me they liked me yet.”

Even worse, she said she has to explain what she has to people. She doesn’t want them to think she’s faking an illness since she leaves her wheelchair to get lunch in the cafeteria with friends.

However, her mother, Vernadine Hawkins, offers her strength and self-confidence when Brandi falters about how to talk about her illness with others. Despite Brandi’s 3.5 grade-point-average and excellent test scores, she is nervous about attending college for this reason.

“It’s something you have to do,” Hawkins says to her daughter. “You have to do it to get more comfortable with yourself. People are curious and you want them to understand what’s going on.”

Hawkins said that before the Americans with Disabilities Act of 1990, people like her daughter were forced to feel ashamed of their illnesses. Now, Brandi can be open about Nemaline Myopathy with other people without worrying about losing her rights. A drug addiction counselor and recovered drug addict herself, Hawkins may not know what it’s like to have a disability, but she knows plenty about helping people to open up and accept themselves.

Her mother’s support has shaped Brandi’s attitude when it comes to telling people about her illness. When she meets someone she knows she is going to become close friends with, she has a procedure:

“I’ll just be like, yeah, I have this disorder that weakens my muscles and we don’t know how serious it is but we know something’s wrong. You have to know this in order to be my friend.”

Still, Brandi says she feels most comfortable with her friends from MDA camp, India and Shantay, who both have strains of the illness.

“People say they understand what it’s like but they don’t because they’re not in my body. But they [India and Shantay] know what I have to go through.”

Despite her worries about high school, Brandi believes she may have a future there. Math is her best subject and she plans to get a teaching degree at college in order to teach 9^th grade math.

“I want to be the cool teacher that kids can joke around with,” she says.

She wants to be the loud, funny teacher, just like she wants to be known as the loud, funny girl. She won’t be “the girl in the wheelchair” anymore.

Michael’s story

When I ask Michael Jones about Brandi, he doesn’t break his silence, but he smiles. The tall 19-year-old doesn’t speak unless asked. When Michael does speak, his speech is thick and hard to discern, a symptom of his strain of Muscular Dystrophy – Spinalcerebellar Ataxia. As a result his mother, Gwen Jones, often acts as an interpreter.

“See that smile? He knows Brandi all right,” she says.

With both her father and uncle possessing different strains of Muscular Dystrophy, Jones is familiar with the illness. The disease is linked to the X-chromosome, so most of the women in her family are carriers. She knew her son would have a 50 percent chance of inheriting the family disease, but when she was getting pregnant, there was no test to determine it in advance. A few decades after Michael was born, she had two more children, both girls, who are now ages six and eight.

“God has a plan. He gave me girls for that reason. By the time they have children, there will be something to help them along,” she said.

She has high hopes for Michael, too. Growing up, her son’s life was complicated by a series of incorrect diagnoses. By pre-kindergarten, it was apparent that something was wrong when Michael had problems doing things like holding safety scissors or hopping on one foot. The first diagnosis was Charcot-Marie-Tooth disease, one of the most common genetically link neurological disorders. Symptoms include a lack of muscle in the feet and difficulty speaking, both of which Michael had.

But as he got older, these seemed to be the only symptoms he shared with other patients with this illness. At age 13, he was rediagnosed with Spinalcerebellar Ataxia – and ADHD. The latter diagnosis explained some of the symptoms that resembled those of the first diagnosis but weren’t. Michael transferred to a school for students with learning differences and began to improve in school.

Today, she lovingly boasts, Michael is becoming fully independent. He takes his seven medicines a day without prompting from his family. He helps with the laundry and the dishes. He attends Montgomery College part time, taking two classes, English and reading, which will prepare him to take 101-level courses in the fall. He’s held down a job for over a year working at the Mayer Youth Leadership Institute at Howard University. In this division of the D.C. Department of Employment Services, Michael participates in community service activities like collecting money for Haiti and heading a canned food drive. He has several close friends who he hangs out with on a regular basis.

Since his friends are people he met in school and also have learning differences, Michael doesn’t feel self-conscious about his illness. He and his friends don’t talk about what they have since they already know from school. Michael knows one of his friends has Asperger’s Syndrome, but the two have never brought it up once. He says sometimes people are surprised when they meet him and he walks awkwardly or is in his wheelchair, like when he started his job.

“Now the only thing they do differently is tell Michael to catch the bus to places instead of walk there. They want him to be independent too – when I called his boss, Mr. Nixon, about something, he said to hang up and have Mike call instead,” Jones said.

Michael’s job has allowed him to be financially independent when it comes to buying the things he wants. He estimates he makes about $100 every paycheck. He spends this on hats, video games, and especially, shoes. Michael prizes his shoe collection. While it consists mostly of Nikes, he just bought a new pair of white and navy-blue New Balances. He’s just started breaking them in with special insoles so they will accommodate his highly arched feet.

While his job, family and friends all make his life easier, Michael says that the most difficult thing in his life is a service that was actually designed to make things better for him – theMetroAccess Bus. Like Brandi, Michael is capable of walking in his own swinging gait, using his torso as a pendulum to ambulate his hips and legs, but uses his wheelchair for long distances like getting across campus to class. That means that when the bus picks him up, he needs to use the wheelchair lift.

Since he calls MetroAccess in the morning specifically stating that he is disabled, he and his mother are surprised that the wheelchair lift often is nonfunctioning.

“Sometimes it’s a lack of training on their part, and I can go over there and make it work for the guy,” says Jones. “But sometimes, it just won’t budge.”

Michael said that there have even been times where they’ve had to call another van to pick him up. Sometimes he’s late to class because of it. Jones said she’s complained to MetroAccess about the situation, but nothing has worked.

“When you’re going to pick up people in wheelchairs, this is one of the things you need to check before leaving the garage,” she said

Michael knows there is one event in the month where he doesn’t have to think about transportation. That’s when he meets with his group for teenagers with disabilities. Based in Baltimore, the group takes over a hotel for a weekend and provides activities that Michael doesn’t have to worry about whether he can do or not. It happens the first Friday of every month, so Michael just attended the one for April, where the group had their own casino night. He discovered that he has a knack for poker and blackjack.

He’s an example of how, with a support system, a disabled person can focus on learning new things instead of what he can’t do.