Thursday, September 12, 2013

Is it time to stop being Superman?

Have any of you seen Superman II? The movie had me thinking at my therapy session today.

The conflict within me

Since my 25th birthday more than 15 years ago, I have been dead set on finding a cure for cystic fibrosis. It was that day I began writing "Alive at 25" and everything in my life dropped to number two on the priority list. Since then, I've written 3 books, run 13 softball tournaments, made 50 plus speeches and created a music video for cystic fibrosis. Don't get me wrong. I love doing things for the cause but I think somewhere along the way I became defined by CF and I have no idea who I am anymore. In the midst of those 15 years, I managed to find my soulmate, have 2 beautiful children and keep my health in good shape for CF standards. Still I have forgotten who I am. I don't know why people like me. Is it because of who I am? Or is it because of what I do? I have some great friends but I wonder if they really know the true me. I wonder if I know the true me.

For those of you who remember Superman II, there is a scene where Clark Kent (Kal-el) talks to his mother (Lara) and tells her that he doesn't want to be Superman anymore. He just wants to be Clark Kent. He wants things simpler. He doesn't want everyone depending on him to save the world. I think I feel the same way. I don't know that I want to be the Superman of finding a cure for CF right now. Maybe I just want to be me. I think I need a break when Wish for Wendy and the new CF video are over. Maybe I need that Clark Kent time on my hands. I need my friends to hang out with me at a party not just at a charity event. I need to be at a ballgame talking about my family rather than how much money we raised.

This is who I thought I wanted to be all of my life and especially the last 15 years

For 15 years, I have given my heart and soul for the cause. I love doing it, but I think somewhere along the way I lost touch with who I am or what I wanted for me in life. There is no doubt that I am defined by this disease. In many ways, that's great. I've been able to do things that most people have not been able to do...throw out a first pitch at a Braves game, run with the Olympic Torch and speak all over the world to large audiences. Still, I wonder what it's like on an October or November day not to panic about the weather for Wish for Wendy. I wonder what it's like not wearing a shirt and tie and talking to hundreds of people. I wonder what it's like not thinking about a terminal disease every minute of every day.

I find myself finishing Wish for Wendy meetings or closing out speeches to rotary groups and wanting to go home, talk about nothing CF-related and snuggle with my wife and kids. I want normalcy...a normalcy I take full responsibility for ridding myself of 15 years ago.

I am not saying I'm Tom Cruise or Derek Jeter. I'm definitely not saying I'm a celebrity or I'm better than anyone else. I want you to understand that right away. I just mean that in the world of cystic fibrosis I have become somewhat of a role model and I'm not sure I want that anymore. There was a time that nothing meant more to me. Right now, nothing means more to me than my wife and kids. Maybe that's just part of growing old.

Cystic fibrosis can't compete with this

I get e-mails just about every day from people talking to me about cystic fibrosis whether it's the CF Foundation or someone who is affected by the disease. It's great to feel like I'm helping but still it's tough constantly thinking about a terminal disease with a median life expectancy in the late thirties especially when I have it and I'm 40. It really makes me respect Michael J. Fox and the late Christopher Reeve. It makes me wonder if they ever needed a break.

I had a lot of family come into town to celebrate my 40th birthday and while that was great, it made me realize what a big deal it was that I made it to 40. I remember Rusty Sneiderman telling me that I was going to make it to 40 and how excited he was. Rusty died at 36. He was my friend and my cheerleader. My therapist thinks I have survivor's guilt and maybe that's part of it. I don't know. I think a lot about death lately. I think a lot about what would have happened if I hadn't made the fight against CF such a huge part of my life. Would I have found Andrea? Would I have Ethan and Avery? Would I have issues with depression? Would I have succumbed to CF?

I wonder what people would think about the real me. Here are some things you may not know since I speak to large groups and throw 600-person softball tournaments. I am an introvert. I'm terrible in a crowd. I like to be by myself. I want people to like me. I doubt they really do. I'm terrible with conflict. I appreciate when people say that I look so healthy but it embarrasses me at the same time. I try to avoid any discussion regarding health or my charity work when it comes to hanging out with friends. It's not that I'm ashamed of it. It's just that I'm constantly reminded of it. I'm modest to a fault. I hate hearing about the things I've done because even if someone else is saying it, I feel like I'm somehow bragging.

That reminds me of a story I rarely talk about. I don't tell many people. When I was 10 or 11, I was getting really good at tennis and therefore getting a big head. My grandmother Ethel Lipman (who would die the following year) was watching me play at Wild Dunes against this kid named Perry. Here's what I remember about Perry. He was exactly one day younger than me and resided in Detroit. That day, I was crushing Perry. He had no chance. I think it was like 7 games to none. It was then that I grabbed a racquetball glove that was my father's from my tennis bag. I did it at match point to show off. I won the point and was just smiling. "My grandmother was going to be so impressed," I thought. The opposite happened. A woman who some who knew her called her the nicest person on earth scolded me for showing off. She told me that showing off like that did not impress anyone and I should apologize to Perry. I don't even remember if I did but I remember her words. I remember the humiliation I felt. I have diverted cockiness like the plague since then. I still think about Perry every year on my birthday. I have tried to look him up but it's hard to find someone in Detroit, Michigan with the first name Perry when all you have is a birth date and no last name. Maybe it's best I never call him to apologize. I'd say the odds of him remembering this moment in time are astronomical. I only wanted to tell you that story so you know something about me. Modesty is one of my attributes as well as one of my downfalls.

After Wish for Wendy, I'm going to hang up the cape, take a break from CF for a while and see what else there is in this world. I don't know if I'll come back and be "The Superman of CF again." But who knows? Clark Kent decided Superman was who he wanted to be.

Maybe I will too.


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