Today is my 32nd birthday!!! It is interesting how my birthday has become a marker for remembering my life with Stargardt’s disease. I’ve had 22 birthdays since starting to lose my vision, and 21 since my diagnosis. My 21 and 22nd birthdays were markers of half of my life living with the disease, unknowingly and knowingly respectively. Those were difficult.
But, my hardest birthday was my 16th. Turning 16 is important in our culture, for one reason and one reason only, the driver’s license! Now, I personally had been looking forward to my Sweet Sixteen since I was 8 and my dad told me we were going to get a ’67 Mustang convertible and rebuild it for my first car. Sounds awesome, right? Well, that dream was dashed on a December day in 1996 when the diagnosis came in and I was told I would never drive. The dread of my 16th birthday started that day.
The real panic set in when I turned 15. By this time, I had come to accept my diagnosis, for real and we were seven months away from two of my best friends’ 16th birthdays. Since it was summer, I did get some of a reprieve, but when August came around car talk was full force. Not that I wasn’t happy for them, because I was, but it was a constant reminder of my loss. Every lunch break we were in the library with newspaper ads and Auto Trader books figuring out the perfect car. And I knew what the perfect car was, and I would never get it
Well, January came around and one girl got a Mustang—no not a cool vintage one, but it was great all the same—and the other a Honda hatchback. So, we survived the car purchases, and 5 months to go ‘til my day. And then it came, and guess what my mom had planned for our family to do? We were to go to an eighth-grade graduation party. So, I really liked the girl who the party was for. Our families had been friends for years and I wanted to celebrate with her, but not on my dreaded birthday. I wanted to be alone in my room listening to depressing music and feeling sorry for myself. Couldn’t we send a card and hang out the next day? Well, no, I had to go.
So, in my sour mood, we went. And low and behold, it was a surprise party for ME! Family, friends, pizza, and cake. There was even a DJ and hula-hoops. I don’t know why the hula-hoops, but they were fun! Did I forget about the car, no. Do I still want to drive, yes. But I did realize that I was loved for who I was and that my family and friends really understood how bad this day was going to be for me and that I needed a distraction. Not every story ends like this, but I’m glad this one did!
And I just realized that my 16th birthday was half my life ago—full circle.