Kasey Hostetler - Medicine & Healthcare, Physiotherapy in Nepal
“I have a degree in biochemistry, and no experience in physical therapy.” I kept reminding myself this as Suse, a volunteer from Germany, and I first walked into the Duchenne Muscular Dystrophy (DMD) Center for boys in Bhaktapur, Nepal. Due to the roadblocks enforced by the Maoists during their political strike against the Prime Minister, we could no longer take the microbuses and had consequently been moved from our original volunteer assignments to one within walking distance from our host family. So there we were, and 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-roomed shack of the DMD Center.
The DMD Center was founded by a delightfully jolly Nepali named Himal, which in Nepali, means “mountain.” The name serves him right; he is the backbone, stability and heart of the DMD Center. His inspiration comes from having two sons himself that are both affected with the disease. Himal has a pleasant, toothy smile, graying dark hair trimmed close to his round head and walks around in old athletic flip flops with a consistent limp. His demeanor is quiet, but he exudes a sense of determination and resolve that stems from a deep love for his sons. It is a typical characteristic of a 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 the much-needed daily physical therapy 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 around 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 and pool their money to pay for a physical therapist to make daily calls to the center for their boys.
The DMD Center itself stands next to the several story brick building that most of the families reside in. The center is a simple structure with a bed for stretching, two basketball hoops, light inflatable balls, plastic bowling pins and toys along with a fair-sized TV with a Wii (for when the power is on). Paintings the boys have done, photographs from various outings and posters of Spiderman (their hero) cover the painted walls. There is wall of rainbow colored handprints and there are names written sloppily beneath each one in black paint to indicate its respective owner. The wall was painted about a year ago, and I count two more handprints than boys currently at the center.
During the first couple of weeks Suse and I fell into the routine at DMD quite easily. In the morning, Suse and I would take several hours to stretch the boys individually (she is a trained physical therapist and gave me instructions so that I could help her and soon I was able to perform the whole routine myself). In the afternoon we would play with the boys and invent new bowling and floor hockey games. It didn’t take us long to discover that the boys were absolutely incredible. It only took three days before they were comfortable with us. They began yelling my name constantly (“Keeeeseeey”), they’d joke around, smile and we all would whistle a lot together (songs like Jingle Bells) because it helped build their stomach muscles.
They were really beautiful kids and it was so sad to see their current states. Their ages ranged from 12-21 and some of them were very weak and had terrible contractions (I think this is the word Suse translated to English from German for me) in their hips, knees and ankles, to where they couldn’t hardly extend at those joints. Suse said they looked terrible compared to MD kids of the same age in her country, just because the treatment there was so poor.
The weeks flew by. One week, the center was closed while a new roof was erected to more adequately protect the boys from the looming start of the monsoon season. In my final three weeks, I was the sole volunteer at the centre as Suse returned to her placement prior to the Maoist strike. I decided not to return to hospital I had originally been placed in. I just couldn’t leave the boys.
My experience at DMD 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 while increasing my knowledge in terms of information and facts, I got something quite different. And I believe something more important.
To be born white and in a western society is something that is easier to say than to fully comprehend its meaning. I don’t know how many times I have said while I was there, “I am so lucky.” As if being born white and western wasn’t enough, I was also born healthy and relatively normal. I can’t say this for any of the boys at DMD.
Not only were they born into a world of poverty, they were born disabled. They can’t run around like other boys, some can’t even go to the bathroom by themselves. Just lifting a TV remote or itching their nose requires so much effort from both arms. For some of them, it is barely possible. I wonder what they think of other, healthy boys.
Being together for anywhere between 2-7 years at DMD, these boys have an incredibly tight bond. They are all in the same boat and their families have come together, moved from all over Bhaktapur and Nepal, to bring them together at the DMD center. The center is run with love, and that is very 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.
In my first week at DMD, I met a woman who stopped in briefly one afternoon to visit the boys. She was a nurse from LA. The boys painted with watercolors every afternoon to practice their fine motor movement and put the paintings produced on calendars that the centre sold to raise money. The nurse, Lillian was her name, donated enough money to buy the boys decent canvases and more expensive oil paints and brushes so that their 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 3 to 4 days, depending on their strength and patience. In November, the paintings will be taken into Kathmandu to be sold. All the money will go back to the center. It was nice to see that DMD doesn’t rely entirely on money just being given directly to them. They have pride in their boys and their cause and like to be somewhat self-sufficient.
Everyday that I spent with these boys taught me something, inspired me in some way, or changed the way I view my own life and fortune. Everyday, I walked away feeling relieved that someday I could go back to my easy and comfortable life in Washington state. This feeling of relief was immediately followed by a feeling of immense guilt. While I could escape the scene, I couldn’t evade the guilt. That is something I feel I will always have, no matter how much I try to help them.
But as much as the guilt burns, I cannot forget the boy’s laughter and the grace with which they carry out their lives. I can’t forget the inspiration I have felt in their presence: the determination in Suraj’s face, the goofy playfulness of Rohit’s expressions and the happy innocence in Anish’s eyes. These images and emotions override any disabling feelings of guilt, and I find myself not feeling sorry for them, as those feelings hardly help, but wanting to work to better their inspiring existence.