My Birthday is a Big Deal…
I would bet almost everyone looks forward to a birthday. When we are small it’s the party and attention. Well, I know some who still throw parties well past childhood so maybe my last statement wasn’t completely accurate. Anyhow, most people look forward to their birthday every year.
Not me…
When I was young, birthdays were anything but magical. Type 1 diabetes in the 90’s wasn’t as easy as it is now. I didn’t eat the cake. I couldn’t just play with the kids at the party. I was born with congenital myotonic dystrophy. To top it all off, I had to share my parties with my brother EVERY YEAR! I have dreaded my birthday for the better part of 34 years.
Fast forward… but first peddle back…
I had a 25% chance of making it to my second birthday. The longer I am alive the lesser of a chance I have of making it to the next “level" of life. I turned 34 last week. On the outside, it wasn’t extraordinary. The day was simply a day. It came with a few phone calls or a visit from my favorite humans. On the inside it was miraculous. I, me, the girl who joins only 19 other humans in my country with infant onset of this disease lived another whole year. I did it! I may add I live independently. When I say independent, I mean 100% on my own. That is a huge deal too.
So what?…
It may not sound amazing or miraculous and it is. Let me tell you why. This disease when someone has it from birth attacks the brain first. I wasn’t supposed to talk, tie my shoes or walk IF I managed to make it that far. I was supposed to be mentally handicapped. Jokes on them. I’m a freaking genius borderline insane, but genius. Lol. My life has been a hamster wheel of braces, organ failures, mobility failures, ridicule and sickness. It still is, but now I’m older. I am what my provider calls a pegasus-unicorn. I was never meant to graduate high school or college. I was told I would die before that. After that, the doctors didnt know what to do with me. Honestly, none of them do. This disease has little research, zero treatment, and no cure. My medical team and I are in uncharted waters. I can hold down only 4 foods, when I walk or put weight on my body, my bones break. Every muscle in my body is spastic and sometimes that will break bones. I never stop moving. My hair falls out until I’m bald. My heart will beat at 20bpm or 200bpm. Every day is a guess as to the symptoms I will deal with. Oh the best part, I also have epilepsy.
My uncharted waters and beyond…
With this now known you can imagine I spend most of my life in survival mode. This past birthday I was thinking about how long I’ve spent in survival mode (34 years exactly). Now, I’m staring down the hill of end of life decisions as this body starves itself. That’s harsh. It’s okay though. I can’t stop it. I can’t stop death, but I can stop surviving and start living. I have so many things I’ve wanted to do, and planned to do in retirement. I don’t have time for retirement. I only have now. So I’m going to live and not survive. If I never see 35, I hope the summer of 34 makes memories that last a lifetime.
My birthday was always a big deal, I just didn’t know it.
