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[ Tuesday, May 17, 2005 ]

 

the small joys of life

While waiting for the BART train to come last week, I noticed a young man with Downs Syndrome also standing impatiently at the station. When the train arrived, he ended up sitting across from a young woman who was talking on her cell phone. Concerned, he asked her if she was ok, evidently mistaking her sniffles and cold for tears. She smiled, thanked him, and said that she was.

Day in and out, people on BART travel in silence. They always look tired or simply withdrawn. Most of the younger people have ipods perpetually plugged into their ears. No one wants to talk to each other. They may stare at you every now and then, simply because they are bored, but when you look back at them, they look away. You know that just as you are, they are probably counting the numerous things they have to get done that day; or if it's the end of the day, they're exhausted and dreaming about their soft beds.

But that young man with Downs Syndrome, in his innocence, momentarily broke the silence rule and actually asked how another human being was doing. It was such a simple thing, yet it touched my heart. When he exited the train at his stop, I wondered how often he travels by BART and I hoped that he would make it home safely.

I thought about my fellow student, Ben, who a few months ago had spoken to our Medical Ethics class about his chronic illness. He suffers from cerebral palsy, a condition as a result of a shortage of oxygen to the brain at birth. He uses a wheelchair to move around and is lucky enough to have a few attendants help him. His condition leaves him without the ability to control some of his upper body movements, and it takes him many jerks of his head and jaw to take deep breaths and sound out a few words. It is not easy to understand what he is trying to communicate. Watching him struggle to speak to the class, I remember thinking about the simple blessing of speech and about how we use our tongues so loosely, sometimes with negative consequences. I tried to imagine what it would be like to have to weigh each word one said, and to have to struggle as much as he was to be understood. I wondered how it must feel to have a brain speeding away while having to wait to speak at such a slow pace to communicate those thoughts. Writing would not have been a means to communicate faster, either, since his inability to control his upper body movements left his arms flailing around him.

And yet, he continued to be optimistic and enthusiastic. I admired his courage in interacting with people and attempting to speak, regardless of how difficult it is for them to understand what he was trying to communicate. It was encouraging to know that despite the ignorance he must have faced on a daily basis, he was optimistic and willing to address that ignorance as long as people were sincere in wanting to understand. He recounted a humorous incident of how people would often nod along pretending to understand when he was speaking, although he knew they didn't really understand what he was saying, so he would often play with their minds. The whole class erupted in laughter. It showed that he understood that they care about communicating with him, but it was difficult for them to follow his conversations. It made it that much easier for any of us to approach him with questions, not worrying that he would take offense if we were unable to understand what he was saying. I thought a lot about how he said that he felt blessed because there were others who have a much harder life than he does. Subhan Allah. Now that's called shukr.

While walking up Telegraph Ave. one day, I was delighted to spot Ben wheeling himself to campus, his wavy, blonde hair blowing around him. Then I observed with shock that some young homeless men were grimacing and laughing at Ben in attempts to provoke him. I was so angry, but I did not know what to do. I was afraid that if I yelled at them, it would embarrass Ben because it would draw more attention to the situation. I knew that it wouldn't make a difference to the homeless men, either, because I see them do that sort of thing to everyone when they walk by. I could only imagine how many times Ben must have had to go through that in a day. Instead, I caught up to Ben and introduced myself, and we talked about the beautiful weather and classes. I was amazed at his high spirits despite what had just occurred. It made me realize how strong he has to be.

One of the last assignments in my Medical Ethics class was to write a letter to a speaker, giving that person feedback about the presentation. I had already decided to write to Ben while he was sitting onstage, struggling to tell his personal story to our class.

He's my new hero.

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