Meet Our Neighbors Series: Mustafa Khamis

Memories of Sudan

It's one of those Maine fall days where the thermometer flutters around the freezing point. “It's a nice state. It’s just cold...I don’t really like the cold.” says Mustafa. We're at the Root Cellar office, at a table by a window. He's sitting in his electric wheelchair, bundled up in a winter coat and Charlotte Hornets’ NBA gear. Mustafa says he likes the Hornets’ teal and purple colors but confesses he's actually a massive Chicago Bulls fan. In retrospect, that was the first sign he was familiar with adversity (see: the Bulls’ record last year). We chat a bit about our shared interest in history and Vikings before delving into his story.

He recalls the scorching heat and sandstorms of Sudan. In the late 90s, as Sudan’s second civil war raged on in the country’s southern half, Mustafa’s family resided in the relatively safe city of Khartoum. The country’s capital and Mustafa’s birthplace, Khartoum was where he spent the first five years of his life.

Mustafa tells me he hasn’t always needed a wheelchair. He walked as a child, albeit slowly and not without frequent accidents. “When I was five, my mom noticed that I would fall a lot.” He tells me doctors “didn’t know what it was.”

His mysterious condition was one of several issues facing his family at that time. His mother had given birth, and the large bump on the baby’s lower back revealed that she had spina bifida, a spinal cord condition which would prevent her from walking. In the midst of these struggles, Mustafa’s mother made the choice to leave Sudan with her two children and join their father, who was working in Newark, New Jersey.

Immigrating

“That place was rough,” Mustafa says of the Newark neighborhood. “One time we were out somewhere and came back to the apartment and it was ransacked.” Possessions had been stolen and what was left was strewn across the floor. The police never found who was responsible.

The struggles of immigration followed the six-year-old Mustafa to school. Having only spoken Arabic as a child, he still clearly remembers his classmates laughing at his early attempts to speak English.

Dissatisfied with their life in Newark, Mustafa’s mother moved back to Sudan with her two children. However, the seriousness of her daughter’s spina bifida required the attention of American doctors. Within a year, the three were back in the U.S.

Relocating

Seeking safety and opportunity, Mustafa’s mother moved to Maine with her children while the father continued working in Newark. They spent months in a Portland shelter before finding an apartment. As they settled in, Mustafa made close friends with other children in elementary school.

Yet stability didn’t last long. It was discovered that Mustafa’s father had begun a relationship with another woman in Sudan. The impending divorce saw the father move back to Sudan while Mustafa, his sister, and mother remained in Maine. “So when was the last time you saw your dad?” I ask him.

“2007.”

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The Diagnosis

There’s a slow sadness in Mustafa’s voice as he thinks back to this episode. “When I was nine, I got diagnosed with muscular dystrophy. Duchenne’s muscular dystrophy.” It’s a progressive and ultimately terminal disease. His difficulty walking and frequent falls had found a tragic explanation. “It affects the muscles, like my legs. Like, I wouldn’t be able to get out of this chair.”

After the diagnosis, Mustafa was able to crawl around the house for a while. Soon after, he could only manage in a wheelchair. Eventually, the manual wheelchair became too difficult for his arms to maneuver and he opted for an electric one.

Mustafa is upfront about the emotional toll of his condition.“During high school, hearing about people getting their licenses...I had a really hard time with that. And I felt like people were judging me because I was in a wheelchair, and that they were looking at me different.”

These feelings still occasionally surface. “Sometimes, I really get depressed. Like, I ask God, ‘Why me?’” However, Mustafa tells me the shyness and depression he felt through much of high school has faded with the help of others.

The Power of Mentors

For all of his mental strength, Mustafa emphasizes just how vital the advice and support of others has been on his journey.

First and foremost, he credits his mother. She moved him and his sister out of shelters and bad neighborhoods, carried him up and down stairwells, and provided constant emotional support. “My mom, she means the world to me because she’s been there through all the bad times and good times.”

Mentors also came from outside the family. “What really helped me with my depression was talking with my [high school] counselor.” It was his counselor who pushed him to join Kindred Spirits, a group of boys from countries like Somalia and Sudan. Their parents’ reasons for immigrating to the U.S. often mirrored his own story. “Same thing [as me]. Everyone wants a better life for their kids.”

Through Kindred Spirits, he made friends and gained confidence, performing poems on stage and hosting their annual talent show. He also built confidence when an edtech at school encouraged him to say “yes” to a girl’s homecoming invitation. Mustafa tells me, “it was a great time.”

Looking to others for inspiration and guidance is a practice he feels more people should adopt. He tells me many of his friends lacked direction and “went the wrong way.” He has seen peers spend time in jail for using and selling drugs. “I was able to stay away because I had some good mentors, especially in high school. And my mom.”

Places like the Root Cellar—which he has regularly visited for around a decade—have offered him and his friends a supportive community and place to hang out. Mustafa is especially close with Sean Noe, the Children and Teen Ministry leader.

“Sean is a mentor,” Mustafa says, glancing across the room as Sean wraps up his afterschool homework-help session. “Everyday, I’m here at the Root Cellar—just to hang out with him and talk sports. Recently I’ve been cracking hairline jokes.” We look over at Sean, who is conspicuously wearing a baseball hat.

Mustafa’s story reminds us that life isn’t a solitary endeavor. For as much as his journey is a tale of mental fortitude in the face of extreme adversity, it’s also about the importance of community—teachers, counselors, parents, and friends— in facing life’s most difficult challenges.