One of the guys in a group for spinal cord injuries I'm in passed away this afternoon after a battle for his life this past week. He had a blood clot that hit his lung and despite some serious great efforts just couldn't be reversed and he died. I'm so sad for his family.
This terrifies me on a very personal level too. I've had my own fight with blood clots and luckily won but it's something I have to watch for all the time. With decreased feeling in my legs, that's hard, along with less mobility which increases the chances. Its not just getting around that becomes the challenge when you have a spinal cord injury. Its not feeling well, figuring out why you don't feel well, what do I do about this... everything becomes such an emergency. A cold isn't just a cold any more. Now it's a chance to land you in the hospital for God knows how long because your body can't handle it. You have to always be on the watch for signs of a stroke... That's fun! When you're not injured, you take for granted how much your spinal cord does for you. You know it's important! But you just don't realize How important. For example... if your bladder becomes distended (full) and it sends a message to your brain. A normal spinal cord relays the message and you know you have to go to the bathroom as soon as you get a chance so you start planning for that action by looking for a bathroom or figuring when your break is, etc. With an injury the message gets broken up and the body panicks. Blood pressure goes up but heart rate can drop, body temp rises above injury site, muscles start to spasm, headache, and possible stroke... all because you have to go to the bathroom. Nothing is "normal" anymore. You have to plan your week to use energy in the right places and conserve in the right places just to be able to feed yourself or take a shower. A doctor's appointment becomes a 2 day event: 1 day for getting ready and the appointment and 1 day to recover from it.
I hear all the time how it must be nice to "Get to stay home". Yes it's wonderful to sit here and hurt non stop to the point you don't sleep, wonder if today you'll have a stroke or a seizure, maybe fall and break something again, will I be able to stay awake enough to eat today so I don't get sick, did I take my medicines... yes, its a fun life. I will gladly trade with anyone who would like to try it, even for a day, but you take the disability and all that goes with it too.
Very few people know what I go through on a daily basis. I hear how strong I am... No I'm not... I have no choice. What a great attitude I have... Wrong again... No one is around on the bad days and I stay quiet.
So tonight, I shed tears for Ory and his family and friends. His struggle is over and no longer does he have to live in fear and worry. I shed tears for myself and living in the middle of my struggle but most of all I shed tears for the lost of my former self that I still see in my dreams as she takes me dancing through the night from adventure to adventure where no one is afraid to love me for fear I might break. She's the one I miss the most in this reality I've been given.
