Since late summer there had been hushed whispers about Lou Gehrig’s disease in my house. No one told me anything directly and I did not particularly care to know what the talk was all about since I figured it did not affect me. Lou Gehrig. Lou Gehrig’s disease. Just another name. Just another disease. Just another celebrity who is being remembered for something, only because he was a celebrity. No one remembers the names of the other thousands who have died from the same condition. I paid no attention to the person or the disease. I was fourteen and too busy for these kinds of distractions. I was too busy trying to persuade my parents into getting me the latest cell phone. I was too busy making virtual friends on Facebook. I was too busy trying to impress my friends how cool of a kid I was. I was too busy in my own world.
Till it hit home! I remember sitting at the dining table with my family for Thanksgiving dinner. My uncle, who I adored, was sitting right across from me. He was his usual jovial self but there was something different about him that day. Once in a while he would slur his words and when someone asked him about it he explained it away as being possibly from a lingering cold he had been having. I did not pay much attention to it.

What happened over the next few months was something beyond my imagination. No one could have prepared me for that. My uncle’s body gradually started getting weaker and weaker. Things moved so fast that I felt like I was looking at a different person every day. This man who prided himself on being faster than the wind and who could outrun all his nephews and nieces was barely able to walk. My uncle, who I thought, threw a football faster and with more precision than Tom Brady could hardly lift the ball now. The man who would argue endlessly and never concede a point easily would now hardly speak and not because he didn't want to but because he couldn't. His vocal cords had become so weak that they refused to even make a grunting sound. My uncle who would never ask for help now needed help in everything, from feeding to clothing and from getting up to going to the bathroom. Ultimately, even eating failed him. His food went from meat and bread to puree and ultimately to baby food and even that he had an impossible time swallowing. His doctors advised putting a feeding tube in him. He refused. “I don’t want to live a life like that” his actions would speak. And then on a chilly April morning he died. He was 46 and had been sick only for a few months.

My reaction to his disease went through several phases. Initially I was angry at him for not being the friend and playmate I had always relied upon him to be. “Why won’t he play with me anymore?” I would ask my mom and when she tried to explain things to me, I was not ready to listen. I missed him taking me to the ice-cream store. I missed seeing movies with him and most of all I missed talking to him. As his condition got worse, I stopped going to his house. I must have thought that if I didn't see it, it didn't exist. “I think he is always looking for you” my brother told me and continued “when I go to his house he always looks past me as if expecting you to follow me.” I started visiting him again but it was hard on me. His death was even harder on me.

I felt sad and lonely. But most of all I felt helpless. Helpless that I could not do anything for my uncle. I felt dejected that I would never again see the man I loved so much and who meant so much to me. “Life goes on” I would hear my relatives say. But life would never go on for me the way it had been before. My mother tried to cheer me up but nothing seemed to help. That was till my mother persuaded me to go on a walk with her. That walk turned out to be a walk for children with autism. That day I interacted with children who needed special attention. I played with these kids, helped them with small chores and read to them at the end of the walk. I thrived in this atmosphere. At the end of the day what the person in charge of the walk said has stayed with me forever. ‘Invest in the human family. Invest in people. Build a little community of those you love and who love you’, he said quoting from a book by Mitch Albom. The chains of helplessness that were shackling me started to break. I started volunteering, I walked for the ALS society. I became a camp counselor for a summer camp organized by the Center for Autism Connections. I got involved in helping people who needed a little help. Things I would probably have never done before now seemed too important to ignore—simple things like helping an old lady cross the street or explaining a math problem to a friend.
Lou Gehrig. Lou Gehrig’s disease. My uncle. People with ALS. No longer strangers. No longer am I too busy for them. They are part of my fiber, my being, my family. A 16 year old can only do so much but a 16 year old has a lifetime ahead of him to ‘invest in the human family!’