On our last drive back from Los Angeles (from the ARM fundraising Gala), I recorded some silliness for fun and then, well, Jason thought I should post it here. We were very tired from the event and found it hard to stay awake on our 7 hour drive home. Some car karaoke, and random nothingness spilling from my mouth seemed to help us out. Didn't plan to post, but why not share?
The other day I was talking to a patient and she said now that she realizes that a cure could happen in our lifetime, she felt like she had her life back. Though I understand this feeling it also made me a little sad that they felt like their life was ever gone. I know sometimes it feels like it, but life is never gone.
Remember, every day your life has just begun. So cheesy...yea, but true. Sometimes I worry where my condition is going and as it progresses the reality hits more and more. However, I think my greatest fear of potentially being in a bedridden state is that I would lose my sense of humor, spirit, and motivation.
It is hard to imagine that if far in the future I were ever to become completely debilitated; not able to write, type, feed myself, that I could maintain a positive state of mind and a heart full of will. The body is one thing, but losing yourself is entirely different.
It is the losing myself, and not necessarily my physicality, that I fear the most. If I don't care about life then what good is my body?
It may seem like I am chasing after a cure, but that is not the entire picture. Because I know a cure is achievable, and in ten years when, and IF, I am further progressed or debilitated, I don't want to look back and say I didn't do anything to help myself or others. I am not a big fan of regret, which is why if I feel passionate or compelled about something, I do it. However, WITH that, cure or no cure I'm going to keep going...this is my hope. I don't want to forget to chase myself, remember to see the humor and get everything I can out of life... If that ever away that is when I would truly become debilitated.
I think I had recorded a few hours of my random stupid "jokes"and singing, if that is what you would call it, and managed to cut it down to 8 minutes. :D
*note, if it looks like I am being mean to Jason it is sarcasm and well, it is just OUR way. We like to poke fun at each other. It is mostly me doing the poking, though ;).