Wrestling with Disability.

My plans keep getting put on hold as I haven't been out of my house since last Saturday. Not really, I mean I've rambled around the courtyard and down the patio, been to the garage, I even managed to mount the lowers on the Ural a few nights ago in prep for an intended trip to SJ to deliver some books for Kyle D to his brother Ian. Never made it. I have either been wracked with pain or asleep. I was supposed to meet up with Ian on Wed, then Thur, then Friday... all fell through, basically stood him up 2 out of 3 times because I was unconscious the first and last time.

What drives me crazy about this is there was a time when if I said I was going to be someplace, I got their 15 minutes early every damned time. I haven't quite grown accustomed to the idea that I can now commit to something and then twenty minutes before leaving my body will crash and I'll be out for the count.

You'd think this would be something I'd be used to. I spent a year in bed when I was 19 or 20. I spent last year in bed. I have lost the use of my legs (twice in the past for about a week each time). I've crashed physically more times than I can count. Even still... I find this whole experience incredibly frustrating.

How does one grow accustomed to the idea, to the realization that they are disabled? How does someone who is 26 reconcile the fact that this just might be as good as it gets? That the best years of my life may have been 6 years ago? How do I keep myself from growing bitter?

From an early age we are taught that we should grow up, get a full education, get a job, get a house, get a wife, have some kids, and as men - support them. That isn't necessarily exactly how I was raised, but Society no matter how progressive we might be, it is none the less engrained into us. To not do so reeks of failure, of personal failure. No matter how much I tell myself that I haven't failed, that this isn't my fault. Had things been different I probably wouldn't have a wife, but I'd have a job, and I'd have my own place.

So I wrestle with this. I continue to wrestle with it as I watch my friends moving forward in all these different directions and I find myself at home relying heavily both on my mother and the state to take care of me. When I am feeling good I feel like I am somehow cheating the system, and when I feel like I do right now I wonder what the hell I did in my last life to deserve this?

This isn't self pity, don't mistake it as such. I live very well, I am better off than a lot of people - disabled or not. I have support from family, friends, and doctors. I have my motorcycle, I have a roof over my head, food to eat, clothes, and I'm not dying. This just my vocalizing some of the thoughts of someone who is 26 who is faced with disabling syndromes and a debilitating disorder.

I tagged everyone in this, because right now I feel like standing on a soap box, because I'm not alone in this, there are a ton of people in my situation, and I think that it goes unthought of by a lot of people - god knows I didn't used to think about it. I'll probably regret tagging everyone in an hour because I don't like to make these sort of thoughts public, but I figure it never hurts if it makes a few extra people think about those less fortunate for a couple minutes - not me specifically.

My point I guess to end this, is if you can get out of bed every day, if you can move around without pain, if you can work, if you are capable of being independent - just take a moment every so often to appreciate it and realize how lucky you are.