Thirty-three years ago this weekend, January 10, 1987, was my bar mitzvah. According to Jewish religion law, when a boy is 13 years old, he becomes accountable for his actions and becomes a bar mitzvah. Before the child reaches bar mitzvah age, parents hold the responsibility for his actions. After this age, Jewish boys have all the responsibility and obligation for Jewish ritual law, tradition, and ethics, and are able to participate in all areas of Jewish community life.
Essentially it’s a Jewish boy becoming a man … and getting lifted into the air in his chair while songs like Hava Nagilia and Wang Chung play. (What? Nobody has heard Wang Chung at a bar mitzvah?)
What few people knew was that by then I was well aware of how long I was supposed to live.
I remember the videographer asking me what I wanted to do when I grew up. I told him I wanted to play for the Atlanta Hawks. (Actually looking at the team now, which owns the worst record in the NBA, I may have had a shot!) Truth be told though, I wasn’t sure I would grow up at all and that question, which had been asked by more adults than I can remember, haunted me those days. At that time, I thought I would die soon because of cystic fibrosis.
It consumed me actually. Was this the last celebration I would have in my life outside of maybe a birthday or two? Would I graduate high school? Graduate college? Get married? Have kids?
Well, I don’t have to tell you that I was blessed to celebrate all these special occasions. To this day, I keep the small figurine from my actual bar mitzvah in my home. If you walked in my office, you wouldn’t notice it.
Yet, I can’t help but notice it most days. When I look at it, memory of my fears at that time come back, but I don’t consume myself as much these days with life or death. I look at it now more as feeling fortunate for being here and realizing why it’s so important to keep working to see the other celebrations in my life.
We in the Jewish community consider bar mitzvah as a passage into manhood but the truth was I had already matured beyond my years. I was dealing with the struggles of life and death and here I was just entering puberty.
As I celebrate this year specifically with being on a new breakthrough drug, I pray that I continue to see every day as a true celebration—even if it’s unaccompanied by Wang Chung.
Live your dreams and love your life.
Andy
The loss of an older sibling from the same disease definitely pre-conditions is to the acceptance of death. Before acceptance though, comes fear and anxiety. With every admissions, the thought of “is this my time” one of the hardest things a kid ever has to go through. We have been the chosen ones though, I truly believe we have a purpose. The message you deliver to CF’ers, young and “old” is truly Inspiring, Andy!
I was touched by your word and your honesty. Your courage in the face of adversity is heroic. Everyone, in the course of life, has a moment where they rise above adversity or fall under its grasp. That moment solidifies the person you will be in the future.
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