Life is hard but full of love at this small center run by the families of Nepalese boys with Duchenne muscular dystrophy
“I have a degree in biochemistry, and no experience in physiotherapy.” I kept reminding myself of this fact as Suse, a volunteer from Germany, and I first walked into the Duchenne Muscular Dystrophy (DMD) Centre for Boys in Bhaktapur, Nepal.
Suse and I had both traveled to Nepal to volunteer with an organization called Projects Abroad and had been placed in the same Nepali host family. But due to the roadblocks enforced by the Maoists during a political strike against the prime minister, we had been moved from our original volunteer assignments to one within walking distance of our host family.
So it was that — after squeezing through a narrow ally off the main, loosely-bricked streets of Bhaktapur, just past the faded “Max’s Fried Mo Mo” sign — we found ourselves staring at the one-room shack of the DMD Centre.
The DMD Centre was founded by a delightfully jolly Nepali named Himaleshower Mool — Himal for short, which in Nepali means “mountain.” The name serves him well: Himal is the backbone and the heart of the DMD Centre. His inspiration comes from having two sons with DMD. Himal has a pleasant, toothy smile and graying hair trimmed close to his round head, and he limps as he walks around in old athletic flip flops. His demeanor is quiet, but he exudes a sense of determination and resolve that stems from a deep love of his sons. It is a typical characteristic of the Nepali to have such intense loyalty and devotion to their family.
Many years ago, when Himal’s now 19- and 20 year-old sons were first diagnosed with muscular dystrophy, he realized that the cost of much-needed physiotherapy treatment was far too great to cover by himself. There were no clinics nearby, and house calls were quite expensive. Figuring that there were other families in a similar predicament, Himal began searching them out and proposed they set up their own mini DMD community around his apartment-style accommodation in Bhaktapur, pooling their money to pay for a physiotherapist to make regular calls to the Centre for their boys.
The DMD Centre stands next to the several-story brick building in which most of the families reside. The Centre is a simple structure with a bed for stretching, two basketball hoops, light inflatable balls, plastic bowling pins and toys, and a fair-sized TV with a Wii (for when the power is on). Paintings by the boys, photographs from various outings and posters of Spiderman (their hero) cover the painted walls. There is one wall of rainbow-colored handprints with names written sloppily in black paint beneath each, indicating its respective owner. The wall was painted about a year ago and I counted seven handprints, two more handprints than boys currently at the Centre.
During the first couple of weeks of our volunteer stint, Suse and I fell into the routine quite easily. In the morning, we would take several hours to stretch the boys individually. Suse is a trained physiotherapist and gave me instructions so that I could help her and soon I was able to perform the whole routine myself.
I was told the regular physiotherapist came six days a week, and not on holidays, but many days in my time spent at the Centre, he did not show up. He was absent completely during the political strike, and Suse and I were the only ones there to provide any therapy for the boys for several weeks. When he was there, his movements with the boys seemed abrupt and rough. I am no physiotherapist, but his therapy seemed painful and the boys’ facial expressions confirmed this.
But when we asked the boys about his treatment, they did not seem bothered by it. Even with his seemingly forceful therapy, I think the boys knew they were better off with him than without.
Volunteers (mostly provided by Projects Abroad) like Suse and I were cycled through the Centre for weeks or months at a time to provide additional physiotherapy (if we were so trained) or general care for the boys.
In the afternoon we would play with the boys and invent new bowling and floor hockey games. It only took three days before they were comfortable with us.
They began yelling my name constantly (“Keeeeseeey”), and they’d joke around and smile and we all would whistle a lot together (songs like “Jingle Bells”) because it helped build their stomach muscles. They are really beautiful kids.
Ranging in age from 12-21, the boys all are absolutely incredible.
For example, consider Suraj, Anish and Rohit. They are filled with such life and energy. Rarely do they have bad days. Rarely could I not steal a smile out of one of them.
Little Anish is only 12 and he smiles constantly. He has the longest lashes and the most beautiful brown eyes. His face steals the hearts of volunteers instantly. He is originally from Gorkha, a small town six hours or so from Kathmandu. His family moved to Bhaktapur several years ago so that he and his brother, who also had MD, could get proper treatment from a daily physiotherapist. They live in a 10-by-6-foot makeshift room where a bed takes up over half of the space, with a tiny kitchen and an old, dusty computer in the corner on the floor for Anish to play games.
A year ago, Anish’s brother passed away at age 14 from respiratory problems. Anish is small, only skin and bones, and I tried to get him to whistle a lot to strengthen his diaphragm. But there’s only so much that can do. I wonder what Anish thinks about his older brother passing away. I wonder if he is scared. I wonder how he can smile so much.
By contrast, Rohit is a big, 16-year-old kid. Lifting his arms is nearly impossible and his back gives him constant pain, but he rarely complains. He liked to talk to me about pop culture (he loves Avril Lavigne), movies (anything but love stories) and soccer (his favorite player is David Beckham). He always would tell me the truth when the other boys were trying to give me a hard time or get away with something.
Suraj had the makings of a very mischievous and troublesome 16-year old kid. He was the strongest of the group, able to take his shoes on and off and inch himself out of his wheelchair onto the stretching bed. He almost always won when we would bowl with the plastic pins and lightweight balls. Suraj knows four languages, including Newari, Nepali, Hindi and a little English. He loves games and competition.
But not all the boys were cheerful. I have never seen such lifeless eyes as those of 19-year-old Sujan. He stared off expressionlessly at corners and cracks in the walls. He never made eye contact or spoke to me. It was as if he just wanted to be done with it all.
Being together for anywhere from two to seven years at the Centre, these boys have an incredibly tight bond. Their families have come from all over Bhaktapur and Nepal to bring them together at the DMD Centre. The Centre is run with love, a fact that is made apparent by the carefully and cheerfully painted walls.
The families put so much time and effort into making it a fun and happy environment for their boys. They also actively involve themselves in fundraising and networking within the MD community worldwide.
The boys paint with watercolors every afternoon to practice their fine motor movement, and their paintings are put on calendars that the Centre sells. A visiting nurse from Los Angeles, Lillian, donated money for decent canvases and more expensive oil paints and brushes so the boys’ work could have more value.
Now, a young aspiring artist comes in every afternoon for an hour and a half to help the boys with their oil paintings. He instructs them on techniques and helps them choose colors. Each boy produces a beautiful painting in three to four days, depending on their strength and patience.
The paintings are taken into Kathmandu to be sold and all the money goes to the Centre. It was nice to see that the Centre has pride in their boys and their cause and likes to be somewhat self sufficient.
The weeks flew by. One week, the Centre was closed while a new roof was erected to more adequately protect the boys from the monsoon season. In my final three weeks, I was the sole volunteer as Suse returned to the volunteer placement she’d had prior to the Maoist strike. I decided not to return to hospital where I had originally been placed. I just couldn’t leave the boys.
My experience at the DMD Centre was a much different volunteer experience than I thought I would have in Nepal. While I thought I would be spending time in a hospital, learning medical facts, terminology and procedures, and increasing my store of information and facts, I got something quite different. And I believe something more important.
It was hard for me to fully comprehend the meaning of being born white and in a Western society. I don’t know how many times I said while I was in Nepal, “I am so lucky."
I wonder if the boys at the Centre feel like the world is extremely unfair. If they do, most of them sure don’t show it. But then again, jealousy is a nonexistent emotion in Nepal. People take what they’ve got and don’t compare or complain, but just live. Still, I wonder what the boys at the Centre think of me, the girl who at the end of two months went back to her easy, upscale life.
Every day in Nepal, I felt relieved that someday I would go back to that comfortable life in Washington state. This feeling of relief was always immediately followed by a feeling of immense guilt. While I could escape the scene, I couldn’t evade the guilt.
But every day that I spent with these boys also taught me something, inspired me in some way, or changed the way I viewed my own life and fortune.
I cannot forget the boy’s laughter and the grace with which they carried out their lives. I can’t forget the inspiration I felt in their presence: the determination in Suraj’s face when he pulled himself out of his wheelchair and onto the stretching bed, the goofy playfulness of Rohit’s expressions when he asked me what I thought about a particular pop artist, and the happy innocence in Anish’s eyes when he would stop playing a game to just look at me and smile.
These images and emotions override any disabling feelings of guilt. Guilt doesn’t help. I find myself not feeling sorry for the boys and their families at the DMD Centre, but wanting to work to better their inspiring existence.
Kasey Hostetler, 24, of Richland, Wash., plans to begin work on a nursing degree in fall 2011. She was in Nepal from April through July 2010, through the volunteer organization Projects Abroad. Hostetler also volunteers at MDA events in the Northwest region. She can be contacted at firstname.lastname@example.org.