Tonight I realized how much I miss my pepere. I also realized how much of a hero he was to me. For those who may not know, my pepere and all of his siblings had a rare disease called Pseudoxanthoma Elasticum
. It caused them all (except for one) to go blind young, lose the elasticity in their skin, develop weak hearts (which caused him and two of his brothers to die around 60 from heart failure) and other problems. My pepere was declared legally blind right around the same age as I am now.
In spite of being blind, he was fiercely independent and very capable. He could still make a bed on which you could bounce a quarter. He did all of his own chores. He worked part time at the hospital and knew his way around it just fine.
In spite of all his medical hardships he could still laugh and never once to my knowledge bemoaned the fact he was so afflicted. To him it was just life and he went on living it, doing what he needed to do to get by. One of my fondest memories of our times together was when I visited with a whoopie cushion. I got him (and I'm sure he knew what I was up to even if he couldn't see) and he just cracked up and went with the joke and we had a wonderful time with it.
I remember when I was younger (and even into my teens and early adulthood) practicing walking around and doing things with my eyes closed just trying to imagine what it must be like for him to function blind. It was never easy to do, which only made me appreciate his ability to function blind so much more. There was often the fear that I could end up in the same predicament (because we didn't really fully understand PXE) and I just couldn't fathom how I would be able to live nearly as well or as independently as he did.
My pepere was in the Air Force. He really didn't talk about it, though he kept a model of a B-29 Superfortress
in his bedroom. He served in the Korean War as a Senior Air Operations Specialist on a B-29 with the 24th Bomb Squadron, 6th Bombardment Wing out of Walker Air Force Base
in Roswell, New Mexico. I remember him saying something about Okinawa but I can't find any information about it in his military record that I requested from the National Archive when I was in high school.
When I was real little, he and my gram (who lived across the hall from him and helped him with his medications) used to record me with him or her on her tape recorder. I actually have the tape recorder in storage still to this day. I have one tape of me and my pepere that he recorded about 30 years ago, only a couple of years this photo was taken, if that long.
I never noted that this photo is a wallet-sized photo that my pepere used to carry in his wallet. When he passed away, it was given to me to keep as a memento.
Tonight I decided I really needed to capture the tape in digital format in the hopes of preserving it longer. It's filled with fantastic stories of my pepere having a basket full of snakes breathing fire and having a fire truck. It is insanely cute. I miss my pepere dearly. We were very close and I had been in the habit of spending almost every afternoon of the last year of his life with him afterschool. Even with all of my confusion over who I was and what I was feeling, I was overjoyed to spend so much time with him. I hope I never forget him.
My sister Cat really didn't know pepere. He died when she was only four years old. I was thirteen at the time. Jess was nine. I wonder if Jess remembers him. I know Cat has said she doesn't really remember him.
I'll post the mp3 of pepere and me when I get into Plymouth tomorrow. It's really big and would take far too long to upload here from home.