This week concludes my final days at the DMD centre. I am very sad to say goodbye to the boys, but the excitement of trekking just around the corner takes some of that painful edge away.
My experience at DMD was a much different volunteer experience than I thought I would have. While I thought I would be spending time in a hospital, learning medical facts and terminology and procedures, 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’m here, “I am so lucky.” Not only was I born white and western, 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, they can’t even go to the bathroom by themselves. Just lifting a TV remote or itching their nose requires much effort from both arms. For some it is barely possible. I wonder what they think of other, healthy boys. I wonder if they experience jealousy when they see them walk down the streets on their own two legs. Or if they feel like the world is extremely unfair. If they do, most of them sure don’t show it at DMD. I wonder what they think of me, the privileged white girl who only has 2 months of time in her life to give to them before going back to her already easy and upscale life. Unlike them, I get to leave this place. But they will come to the DMD centre every day for the rest of their short lives.
Some of them seem to understand their situation and have checked out of life entirely. I have never seen such lifeless eyes as in a boy named Sujan. He stares off at corners and cracks in the walls, and his face is completely expressionless. He has never made eye contact with me. He has never spoken to me. To him, life is a terrible, arduous thing that is a complete pain and bore to get through everyday. I think he just wants to be done with it all at the age of 19.
Then there are boys like Suraj, Anish and Rohit. They are filled with such life and energy. Rarely do they have bad days. Rarely can 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 alone steals the hearts of volunteers instantly. He is originally from Gourka, a small town 6 or so hours away from Kathmandu. His mother, father and brother moved to Bhaktapur with him 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-foot 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 for Anish to play games on. A year ago, Anish’s brother passed away. He was just too weak to breathe and suffocated. His brother was 14, and Anish and him are apparently of identical body types; weak, small and only skin and bones. I fear Anish’s time is short. I try to get him to whistle a lot to strengthen his diaphragm. But there’s only so much that will do. I wonder what Anish thought of his older brother, in the same situation as him, passing away. I wonder if he knows he is headed down the same path. I wonder how he can smile so much.
Rohit is a big, 16-year old kid, but his muscles are weak. Lifting his arms at all is near impossible with all the dead weight he has. His arms almost permanently lay in his lap for this reason. His back is giving him constant pain, but he rarely complains. He likes to talk to me about pop culture (he loves Avril Lavigne), movies (anything but love stories) and football (his favorite player is David Beckham and he wants England to win the World Cup). He always has a goofy smile on his face and will tell me the truth when the other boys are trying to give me a hard time or get away with something.
Suraj would have been a very mischievious and troublesome 16-year old kid had he not been confined to a wheelchair. But he is the strongest of the group. He can take his shoes on and off and inch himself out of the wheelchair onto the stretching bed. He almost always wins when we bowl with plastic pins and lightweight balls. He knows four languages, including Newari, Nepali, Hindi and a little English. He loves games and competition.
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 centre. The centre is run with love, and that is very apparent by the carefully and cheerfully painted walls. The families put so much time an 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 who was traveling all around the valley making various stops at medical facilities, monasteries and private centers like DMD. The boys painted with watercolors every afternoon to practice their fine motor movement and put the painting produced on calendars, which the centre sold to raise money. The nurse, Lillian, 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. In October, the painting will be taken into Kathmandu to be sold. All the money will go back to the centre. It is 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’ve spent with these boys has taught me something, inspired me in some way, or changed the way I view my own life and fortune. Everyday, I walk away feeling relieved that someday I can go back to my easy and comfortable life back in Washington state. This feeling of relief is immediately followed by a feeling of immense guilt. Guilt that I can escape and they can’t. But that is what every day in Nepal brings.
Tomorrow morning, my friends Suse, Alex and myself head up to Pokara and begin trekking on Sunday. We will be out in the Himalayas for 10 days, so the blog will not be updated until my return. Until then, enjoy the World Cup!
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