Posted by George Shaw on Apr 10, 2018
Lukas Kostka spoke at the Friends of FSH Annual Auction in January 2018. Below is the text of that presentation.
Hi, I’m Lukas and I am currently a second year at Washington State University in the Landscape Architecture program; in the hopes of one day becoming a zoo designer and fixing up all the bad zoos out there. But tonight I am here to tell my story of dealing with FSH. I’m well aware that many of us have been affected by this disease in one way or another, whether you have it yourself or just know someone with it. And I’m also aware that there are many other disabilities out there that result in similar limitations. But for those of who don’t have any of these limitations, see, you may think you know what it feels like, but I don’t know you know that for sure. What I am sure of however, well at least I am fairly certain, is that we were all little at one point in our lives, and we all had that learning experience of being put in time out.
The way I see it is like this: Remember that one moment when you were out on the playground with all of your friends? Just having a blast, full freedom and everything, and then before you knew it that freedom was taken away? Then you found yourself sitting in the corner and you had to watch and listen as all your friends got to play without you? And weather you were guilty of the punishment or not, you still felt very undeserving of it? That’s what FSH feels like to me. See when I was a kid, I was really active, physically fit, I was the most active kid I knew. I was always climbing trees, swinging from them as well, running around. Doing everything all the other kids could do but literally all the time and as much as I possibly could. In middle school I got into weight lifting and sports; with a gold medal for my first wrestling match and second place in regional pole vaulting, I was very much on top of my game. Then in my freshman year of high school, my physical actions and muscle growth began to seemingly get harder. Then this continued to get worse for me as time passed. Now I can’t even lift my arms over my head or muster the strength for a single push up.
In reality I degraded over time, but looking back at it, it feels like it happened all at once. During my junior year in high school I was diagnosed. That was when I got put in time out. Ever since then, I have had to sit in the corner and watch as all the other kids get to play, while I can do nothing about it. Sometimes, a kid will run up to me and ask me why I’m in time out. I always tell them the same story; I don’t know why I’m here or what I did to deserve it. But I can tell you one thing- all the stuff I can’t do anymore, that’s being allowed to play with all of you guys. Then as usual they say that they are sorry to hear it and they carry on their way.
Now, I not only tell this story in a metaphor of a time out because it’s somewhat relatable, but because the one thing I know about time out is, as much of an eternity as it feels like, it doesn’t last forever. And tonight we are all here to help those kids get back out on the playground with everybody else. Thank you for coming and thank you for listening to me.