I don’t want to be a cliché. People that get a “second chance” at life are supposed to tell everyone else how much they should appreciate life. The roses smell sweeter. The sunsets are more vibrant. Blab blab blab ba. The thing is, a lot of days, it is true. There are days when it mystifies me that marching bands aren’t walking down the street every day followed by fireworks every evening because I’m still here. (How is that for self-involved!?!) I mean it in the sense that there are so many reasons why I shouldn’t still be here. The cliché annoys me because it assumes no one really appreciates living until they nearly die. That isn’t me. I appreciate living enough that I fought like hell to still be here. I may be broke. I may not have a lot of the things in life you’re supposed to have at, ummm….middle age….but I do have a strong sense of purpose. I’ve spent most of my life not assuming I’m going to live forever, and I know I’m not the only one. So, I’m not going to lecture anyone ab...
Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life