Concert of Hope was started in 2013 to support Huntington's Disease research. Beneficiaries include the HDSA and HDFI organizations. Concert of Hope is a local effort to help find a cure for a disease that affects so many people in the world.
Why I do, What I'm Trying to do
So today is my birthday. I remember back when that was a huge deal to me. I vividly remember one birthday when I was 12. Being a comic book geek and a movie fan, even at age 12, my friends and I stood in line to see Batman the day it opened. I'm talking about the Tim Burton/Michael Keaton Batman, not the Adam West one (I'm old, but not that old). Anyway, I remember feeling completely optimistic, knowing that the movie was going to be amazing and that the rest of my life was going to be so much better as I got older.
Well, I won't say I was completely wrong. The movie WAS amazing--but a lot has happened since then that sometimes makes me with I could go back in time to tell my teenage self some things.
That was really before I knew anything about money, and the fact that you apparently need it to get what you want and to survive. I didn't know about the pressures of a quota at work...I didn't know what stress the people you love can put on you to do what they think you should do. I was basically a punk kid living for myself.
That was also before I learned too much about sickness, death, and my own mortality. I had watched my grandmother slip away slowly to cancer a few years earlier, but that was my only experience with losing someone who meant the world to me.
Fast forward a few years, and I start to notice things about my father. He becomes increasingly violent toward my mom...his movements become a lot "stranger", and he's not formulating thoughts the way he used to.
I don't remember how I found out, how I learned the phrase 'Huntington's Disease', but I know it took many years off dad's life--oh, and since he had it, I have a 50% chance of developing it.
Since that realization, birthdays haven't meant as much to me as they once did. Now, when June 24th rolls around...it's like a clock continuing to click down to THE END. I know that everyone dies but my dad left a lot of things undone, a lot of discussions unhad, a lot of things unmoved. As I get older, even though I haven't been gene tested and have no idea which side of the 50/50 I fall on, I get more convinced that my life, especially, is short. My dad never spent much, if any, time with oldest son, Alex. My dad obviously has never met my sister's kids Jayden and Bryson and Brooklyn...and he never met Jonah and Carolina, either. He missed out. These are all great kids that fill the world with hope, love, and silliness (ask Carrie to tell you a knock knock joke sometime).
Right now, Jonah and Carrie are running around like fools in the living room. Jonah has a dollhouse (a MANLY doll house), and Carrie has BennieMinnie and is watching Dora. I want to be around when they get married (when Carrie's 50--she can't date til she's 35), I want to be around to see them graduate college--after 2 years in the NFL, for Jonah. I want to spoil my grandkids and send them home hopped up on ice cream like my mom does for my kids.
With every passing year, I realize I have screwed up a lot of things in my life. I have ruined relationships that should have been life long...I have followed my feelings when it made no sense to do so. I have made questionable decisions that have cost me more than I ever care to talk about.
The first thing I am going to do is make sure that the kids and Jill know that I love them--every day. I can be the biggest, most cynical jerk in the world. I am tired of being a half-empty type of guy. I need to be more decisive...more than a spectator in my own life.
Still with me? Good. Obviously, the important things here are the HD discussions. I'm now 38 and I know that dad was showing more and more signs that something was wrong at this point in his life. I'm not going to lie, it scares the hell out of me. A lot. I pray daily that God will somehow spare me the pain and slow, crippling death march that is HD, but then I feel guilty for all those people who will develop it. I still haven't been gene tested, mainly because I don't know how I would react either way.
Awhile ago, I was thinking of a way that I could help people in my situation while I could. The best thing I could come up with was putting on a concert to raise awareness and hopefully money for the fight against Huntington's Disease. So, that's what I'm attempting to do. For me, it's very very personal. I know that most of you don't know what HD is or how HD can affect people. You're lucky in that regard. So I'm asking you to consider donating to the HDFI Benefit concert (or at the very least, buying a ticket). Every day, there are strides being made in the fight against this horrific disease, but the fight needs your help. Stand with me and together we may be part of the last generation that is affected by HD.