Life According to Arman: Living with Duchenne Muscular Dystrophy
Like most teenage boys, Arman Noorani enjoys playing video games. He counts “Battlefield 3” and “Borderlands 2” among his favorites. He even has his own YouTube channel, “armann539”, where he posts video commentaries of himself playing the games. But for Noorani, video games are not just a form of mindless entertainment.
“I can escape from reality,” Noorani said. “I can be good at something.”
The freshman has Duchenne muscular dystrophy, a genetic disease that leads to progressive muscle weakness. The disease is caused by a mutation in the dystrophin gene, which is responsible for making the proteins found in the body’s muscles.
Duchenne is the most common fatal genetic disorder in children; the average life expectancy for those living with the disease is between 18 and 25 years. Noorani is 14.
While most high school students have not even begun to consider the inevitable, Noorani has had little choice. He has to face the uncomfortable truth of his disease: he may not have much longer to live.
“You can say a friendship that lasts a year is theoretically, for me, like three years,” Noorani said.
Though Noorani is mature and, at times, very blunt when discussing his disease, he has not always been this way. Since his diagnosis at age 6, Noorani has struggled with both the physical and emotional pain of living with an incurable disease.
Noorani was halfway through kindergarten when he received his diagnosis. Throughout his preschool years, he had been slow at walking, prompting some of his peers to push him down and call him a “slow poke.”
After meeting a doctor who recognized his symptoms as possible signs of Duchenne, Noorani’s parents took him in for a muscle biopsy test. The samples of Noorani’s muscle tissue were found to be abnormal, and Noorani became one of the roughly 20,000 boys worldwide diagnosed each year with Duchenne. Because the mutation that causes the disease is carried on the X chromosome, boys most commonly inherit the disease.
At the time of his diagnosis, Noorani did not grasp the severity of his condition and would not understand the reality of his disease until he was much older.
“For the longest time, I thought it would only affect my legs and I would live as long as everyone else,” Noorani said. “I thought nothing else would be impaired. I thought my legs would get better.”By middle school, however, Noorani could barely walk or run. Fellow students didn’t understand what was wrong with him.
Freshman Nate Fisher, a friend of Noorani, remembers meeting him on the first day of middle school. Fisher recalls running to get in line for pizza at lunch and wondering why Noorani stayed behind.
“Just having met him I was like, ‘Come on Arman, we gotta run to get a good spot in line!’ and after he refused, I assumed that he was just lazy,” Fisher said. “It wasn’t until mid-sixth grade that I knew about his disease.”
In the middle of sixth grade, Noorani became confined to the wheelchair that he uses today.
Adjusting to life in a wheelchair was not easy for Noorani. At school, he drew many stares and students didn’t know how to interact with their disabled peer.
“In sixth grade, the kids in my grade were very scared and they weren’t very considerate,” Noorani said. Though he had become good friends with Fisher, building other friendships was especially hard for him. “I tried making friends, but they couldn’t ignore the wheelchair,” Noorani said.
This ostracization was just the beginning of Noorani’s rocky middle school years. In seventh grade, he realized the harsh reality of his disease.
Noorani had been assigned a science project in which he had to research a genetic disease. Naturally, he chose to complete his project on Duchenne.
“I did research on my condition—not on Wikipedia because you can’t always trust Wikipedia—on some government websites,” Noorani said.
As he read more online articles, he realized that his condition was much worse than he had previously thought.
“I learned that my disease was extremely severe and how it could affect your brain development,” Noorani said. “I learned how it would kill you between 18 and 25, and that was scary for me.”
Noorani’s father, Ajmal, recalls his son’s research.
“The teacher asked us if it was okay [if he researched Duchenne] and we said, ‘Yeah, he knows all about it,’” Ajmal Noorani said. “But the reality is, it’s one thing to be told by our doctors or our parents; each of us tend to gloss over it. But when he went online to several websites, he saw it in black and white.”
While trying to wrap his head around his prognosis, Noorani had to deal with the social anxieties of middle school. He remembers seventh grade as a “tough time” where “everything was going wrong.” That year his girlfriend cheated on him, he fought with his teachers and parents and he started to get in trouble at school. These factors, Noorani said, led to “an emotional blowup.”
He imagined killing himself as a way to end both the physical and emotional pain he was going through. He began cutting his wrists, slapping himself with sharp rulers and attempting to suffocate himself.
“Going to school and being socially awkward and having to deal with social situations that weren’t going well…I just saw that the quality of life wasn’t good, and I felt alone,” Noorani said.
After an incident in which he kept hitting himself, Noorani was hospitalized for depression. He was supposed to stay in the hospital for three days but ended up staying for seven. Noorani is still scarred from his stay there.
“It was a traumatizing experience because a lot of people in there were really messed up,” Noorani said. “There were a lot of anorexic and bulimic girls in there who I befriended, and when I got out I had a small phase where I didn’t want to eat.”
Noorani’s depression lessened after being released from the hospital, allowing him to finish seventh grade and graduate from middle school.Though some of Noorani’s emotional wounds from middle school have healed, he arrived this year at Tam facing a host of physical problems. Because respiratory function is controlled by the diaphragm muscle, Noorani has begun to experience lung problems as his muscles become weaker. What poses the biggest challenge for Noorani, however, is fatigue. Simply getting out of bed and preparing for school is exhausting for Noorani, who wakes up at 6:30 every morning to ensure that he will arrive on time.
When Noorani finally does reach school he tends to feel “washed out” and some days struggles to participate in class because he does not even have the strength to hold a pencil.
Considering the toll school takes on Noorani’s body, one has to ask the question: what keeps him motivated, day after day?
Besides a fear of getting bad grades and being declared a truant, Noorani is driven by something else.
“This is a bit embarrassing, but usually at some point in time I have a crush on someone, so it’s a motivation,” he said.
He also enjoys attending school-organized events including Link Crew’s advisory meetings and Freshman Friday events.
“You have to fill up your day with activities so you don’t dwell on the sad things,” Noorani said. “What I like to do is play video games, make phone calls, tell family that I love them, talk to friends even if I can’t hang out with them and tell them how much I love them.
“A good day for me is when I have plenty of people to engage and have fun with,” he said.
On days when Noorani feels unmotivated to do his schoolwork, he is pushed by Tam’s paraeducator Michael Fowler.
“I don’t know what I would do without him,” Noorani said. “He keeps me motivated, he takes notes for me when I’m not even there. He motivates me to go to class, he motivates me to get out of the nurse’s office and get my a** back to class. I know he’s always going to be there for me, so I have to be there for him.”
Fowler, who is new to Tam this year, says he motivates Noorani by reminding him of his goals.
“I’m his advocate at school,” Fowler said. “I just encourage him. I’m positive with him. At the beginning of the school year he told me he didn’t want to miss a day of school.”
Sometimes, however, even Fowler can’t motivate Noorani. On days when he finds himself feeling lonely, Noorani will leave school early.
Since his friends often eat off campus, Noorani spends most lunches sitting alone beneath the stairs of Upper Keyser or riding his motorized wheelchair around campus.
“One issue I’ve been struggling with this year is that I have no one to talk to during lunch,” Noorani said. “I text my friends, but they’re usually busy. I feel lonely and the motivation to go to school is gone.”
Hoping to lessen the social isolation he faces and inform fellow students about his condition, Noorani approached his Social Issues teacher, Tim Morgan, with an idea to give a presentation to his class about Duchenne. Morgan embraced the idea, allowing Noorani to present to both his own class and social studies teacher Jennifer Dolan’s Peer Resource class.
“The reason I wanted to do this presentation is so that people won’t be scared to approach me or feel awkward around me,” Noorani said. “I want people to be open to more connections so then we can see what we have in common and work from there.”
During his presentation, titled “Livin La Vida Slowca,” Noorani discussed both the physical and emotional challenges that he faces on a daily basis as a result of his condition. Noorani made it clear that students could ask him “anything” because he “is not easily offended.” By the end of the 90-minute presentation many students felt inspired by Noorani’s story, including one student who raised his hand to share his own story about being bullied due to a disability.
The student said that listening to Noorani’s story was “a real inspiration” and made him realize “that you have it way worse than me.” In response, Noorani told the student not to compare disabilities because “as long as you’re going through something, it’s equally as bad.”
Dealing with the challenges of his condition, Noorani has realized that “you can’t feel sorry for yourself.” He tries to keep his own life in perspective.
“Appreciate all that you have because there are always some that are more disadvantaged than you,” Noorani said. “Be grateful and think of what you have. I do that every day.”
Noorani’s peers admire this outlook. Many of Noorani’s friends know that they can always go to him when they want to talk or get advice about a problem.
“Arman is caring and understanding,” Fisher said. “That combination sums up his actions towards his close friends. Honestly, Arman has a lot of problems, but from these life experiences he can give you thorough advice and understanding of your own problems. Usually when you go to a friend with a problem, they’ll give you answers like, ‘Yeah, bro, that sucks.’ But with Arman, it’s like, ‘I’m so sorry, Nate. That’s really not fair that she did that.’”
Another friend, freshman Tucker Swartz, has confided in Noorani since they first met in seventh grade.
“Arman is one of my best friends—scratch that—my best friend,” Swartz said. “He is always there for you and if you need to talk to him he will never talk smack about you to gain attention.”
Recently, Noorani’s friends have been helping him create and complete a bucket list.
“My friend is dying,” Swartz said. “I should help him do whatever he wants — anything before he dies.”
In early October, with the help of his friends, Noorani created a Facebook page called “Arman’s Bucket List,” where people can suggest ideas for it.
“We want everyone to know that they’re invited to join the group and they’re free to come to the events if they would like,” Noorani said.
One item on the bucket list is getting more subscribers to his YouTube channel. Noorani hopes to get at least 1,000 subscribers in order to start a partnership with YouTube, which would allow him to receive money from the site. He plans to donate any money he receives to the Muscular Dystrophy Association, a non-profit that funds muscular dystrophy research and provides health care to patients.
“If we hit 1,000 subscribers we could possibly get $1,000,” Noorani said. “All they need to do is look up ‘armann539.’ I’m almost begging people to subscribe, not because I want to get rich, but because I want to save children with this condition.”
The bucket list efforts reflect a philosophy that Noorani’s father tries to emphasize to his son.
“My point has always been it’s not how long you live, but what you do with the time that you have… If you want your life to feel longer, then what you do is create memories every day or every week,” Ajmal Noorani said. “You do something unique or extraordinary, whether it is for yourself, like going paragliding, or whether you do something that helps others.”
In addition to his philanthropic efforts, Noorani hopes to cross other items—modifying his wheelchair a la MTV’s “Pimp My Ride” and taking an RV trip across the country with his friends—off his bucket list.
Though Noorani admits that he still has what he calls the “major thoughts” he had in middle school, he has come to realize that his disease is out of anyone’s control.
“You have to keep trying even though some days are going to be very, very hard,” Noorani said. “You’re going to want to cry some days, you’re going to want to quit. There are going to be people that get in your way, but you just have to keep trying. I have to find motivation because if I lasted this far, I haven’t gone this far to give up.” ♦