Today I went out in my wheelchair and the bulbs were starting to come out and I thought to myself: “Elizabeth, it is spring, and you are alive.”
Yes, things could be better and yes, I seem to be missing one beat out of every 15 which feels like a horse is kicking you with oxygen depro but I cannot forget the basics. The book of proverbs (or Ecc.) says, “It is better to be a live dog, than a dead lion.” So also it is better to be a live Elizabeth on whatever medical support than it is to not see the bulbs coming up, or the crows hoping after me for treats (I think it was eyeballs they were hoping for – I was stopping an awful long time).
I made a promise to myself, that every season, be it summer, winter or fall, I would say to myself, “Elizabeth it is Summer 2008 and you are still alive!” You see, when my home care person for overnight we advised them that I was missing quite a few beats of my heart.
“Oh,” they asked, “So how do you fix that then…?”
Linda and I looked at each other. “Um…...think positive and hope I don’t die during the night.”
“Oh, I’ve had people die on me.” The worker assured me, “I’ve had them die.”
I told her, “You might not want to use that as your opener; how about, if you THINK I’m going to die, you call the ambulance.”
“Yeah, sure, sure, I can do that to.”
So, you see, on the bad hours and days, it is easy to think about the next heartbeat and miss the picture that, yeah, I made it, though pretty much based on no power of my own, to Spring 2008. I celebrate because I LIKE being alive. I do. And I should try to remember and celebrate that a bit more. Yeah, times suck, but I am still alive.
Today, from Recreation and Integration came the general meeting letter. This is the group which organizes activities for people with disabilities including severe disabilities like me, and how they too can do some form of recreation. The main speaker for their annual meeting is talking about a trek they took to the Base Camp at Everest. I showed it to my day worker and she thought that was pretty damn insulting. I thought it wasn’t very respectful to or representative of the majority of us who use the services of Rec. Integration. You know, those same people who plan activities for US and who seem to think that hearing about someone trekking to Everest is going to cheer us up. Even if the person has a disability, that would seem to fall under the extreme “plucky crip” category. And quite honestly, why would they give that talk (I wouldn't)? "Hey, I trekked to Everest but you can.......sit in a sailboat while someone else steers (the main activity of Rec. Integration)."
Oh well, I am alive and NOT freezing my butt off at Everest. Hooray! Plus, I have a NEW goal. I want to go to the 2009 Sakuracon! It is the Giant Manga three day event in Seattle, usually in early march. So, yeah, it is a WHOLE year away. That means a “Hooray Summer”, “Hooray Fall”, and “Hooray Winter” before, “Hooray, I am spending a special wheelchair wheelbarrow full of money at Sakuracon!”
Yes, did you notice that basically I am only going places to do with Japan, or Manga or spending money? Or sometimes all three is required to get me motivated to keep going? Hey, we use what we have.
6 hours ago