By Rabbi Mark B. Greenspan
Beth Shalom Oceanside Jewish Center
Philip Bach passed away earlier this year at the age of 27. He suffered from a genetic condition called familial dysautonomia. FD, a genetic disorder, is described as follows: It affects the development and survival of certain nerve cells. It disturbs cells in the autonomic nervous system, which controls involuntary actions such as digestion, breathing, and production of tears, and the regulation of blood pressure and body temperature. It also affects the sensory nervous system, which controls activities related to the senses, such as taste and the perception of pain, heat, and cold.
This meant that Philip could not take for granted the things most of us assume are part of life: eating, breathing, a normal sense of pain and pleasure.
Members of my congregation remember Philip as the boy who sat in shul almost every Shabbat with his family for many years. It was hard not to notice him. He wore goggles to protect his eyes and sat leafing through a phone book he brought with him to shul. And he would often shout out responses to my sermon and make comments during services. Philip had an amazing memory and was a passionate follower of TV game shows. By his barmitzvah, he had undergone multiple surgeries. I don’t believe that Philip had a single day without pain and discomfort, though he never complained—this was the only life he knew.
On the face of it, most of us would say that Philip led a tragic life and that his family carried a heavy burden in caring for him. Yet Philip would often say that he was the “luckiest kid around” because he was so special. Philip had the unique ability to touch the lives of everyone he met, and people were inspired by the care his parents and siblings gave him. He also had a knack for making us laugh. Once you met Philip, you never forgot him. Philip was a young man when he passed away and yet he lived longer than most people with familial dysautonomia. Even in death, he lives on in our hearts and memories.
How does one measure a life? There is a story that is told about the violinist Isaac Perlman. The story is that in the midst of a concert, a string snapped on his violin. Rather than stopping to fix the violin, Perlman kept on playing, even more beautifully than before. At the end of the concert, the audience gave the musician a standing ovation. When they quieted down, Perlman is purported to have said: “You know, sometimes it is the artist’s task to find out how much music you can still make with what you still have left.” Apparently this anecdote is an urban legend. The lesson we learn from it, however, is not. Each of us has a symphony in our soul that we compose out of the life we live. We are all broken, and yet there is a great work to be written out of the life we have been given. Philip, at whose barmitzvah I officiated, will always be a part of my life and the lives of all who knew him.