Thursday, September 27, 2007

Joe Jobs

I'm just a little afraid.

Right now I'm in a hotel in Ottawa all by myself. Joe is in the next room over but there is no adjoining door so it's just me here. Since I became disabled I have not ever been entirely on my own, not really at all. As such I've become, I realize as I sit here, a bit dependant on Joe's physical presence. Not that he does every little thing for me, or that I can't do things on my own, but just having him around makes me feel like ... if something happens, like I fall which I am prone to do, there's someone to call out to.

You know.

"I've fallen and I can't get up."

And though the bathroom is supposed to be accessible, the toilet is one that is grade school height and the bar is way above it. There is no side bar. We've agreed, no using the toilet unless I call him back over, the bathroom is a Dave-tragedy waiting to happen. But the bed is very small and the room was deemed to tiny for a roll-away cot, a Z-bed. So the conference people offered Joe his own room, I suggested that he take it. He's a bit to old for cots anyway.

All this time, two years, and Joe's presence kept me from realizing how much of my life, my independance and my sense of personal security my disability has taken. All this time I thought, so what, no big deal, I can manage just fine, thank you. And I was wrong. "We" can manage just fine but maybe, truthfully, "I" cannot.

This would be a depressing realization. But in fact, it's not. Over the years we've relied on one another in greater and lesser amounts. There are many things that Joe completely relies on me for ... they are that 'that's you're job' kind of things. This is a little different because I do what Joe does not want to do, not what he can't do. Here, it's abit more of the 'can't' situation.

But what's got me thinking here about how Joe has managed for two years to let his assistance really slip under the radar. His manner hasn't made me feel burdonsome, or like I should be constantly in his debt. He has provided support to me that has allowed me to continue on my path, to strive after my goals, to be the master of my own destiny. He has never for a moment, now that he has the power of assisting, misused that power. He has shown me that power need not always corrupt.

I will make it through the night, of course, if I fall I just have to crawl to the wall and bang on it. Or as Joe put it before he left a few minutes ago, "Knock three times on the wall if you want me, twice on the pipes if the answer is Joe, Now!"

Ha Ha

While I do not see Joe as my 'staff' or my 'carer', I do see in him the elements of what it takes to give support without taking leadership.

It's something I'm going to think more of, take more notice of, even talk to him about. There's a staff training in this, maybe even for me.


Anonymous said...

Hi Dave, I'm a lurker. Was sent to your site when you had a post about a downs syndrome child a few weeks back. My good friend has, I mean Had two 4 year old downs kids, but we lost one in May (cancer, cured, and an infection won out) anyhow.....
today I de-lurked because I have been "disabled" for the last two months with double knee surgery. And, Iused to date a gentleman with a disability too, who required care getting anywhere!
With him,I did not notice so much how hard it was to get here, there, and everywhere. We did have a few problems with hotels not being correct (like that one post you wrote before) but not so much. NOW, though, with me needing the bars, and the toilet high, ect.. I am finding alot of places SO NOT EQUIPPED with even those basics. I wonder do the people creating the spaces just NOT understand the need for the height (to be chair height so you can slide?) or that it be so high So I dont have to bend knees that wont? Its been a hard two months... getting better, but still.... I wish everyone understoood how hard it is, when even the simplest thing, like going to the potty, is VERY very painful and/or impossible.
I enojoy reading your perspectives.... thanks! And Im glad I got directed to you!

Anonymous said...

You and Joe are lucky to have had each other for so long

BenefitScroungingScum said...

I live alone. I'm single and I don't see my family because things broke down so badly..they refused to accept me as disabled, took the attitude that it was my condition, my problem, and nothing to do with them. When I am with friends who are supportive I realise why my life is so incredibly difficult most of the time.
You and Joe are so blessed to have the relationship you have, not because he acts as your carer, but because that kind of love long term is rare, we're all a little bit disabled when we're alone I think. BG x

Casdok said...

You both sound like a great team!

All 4 My Gals said...

I think this has a lot to do with love in the true sense, and the fact you happen to have a great man beside you...which I would expect no less FOR a great man like yourself.

I would like to think that my Joe and myself would be able to function as well if either of us were to ever become disabled in any way.

I would LOVE to think that that kind of respect and care could be developed with care givers who are being paid to help with people with disabilities, but I think you actually may be one of the few able to do that.

If you do come up with a staff training piece....please share it!


Elizabeth McClung said...

What a thoughful tribute to Joe you have written; thanks for that, becuase having a partner who cares for you; and does so without making you aware of it or throwing it back in your face is a gift, I think.

Linda and I have the knock system as well - which becomes problematic when the neighbor decides to nail up a picture.

Kei said...

Joe totally rocks.

Jacqui said...

Dave, I reckon Joe needs his own blog to help educate the carers. I often struggle with providing care - particularly personal care - in a way that is unintrusive to my son's own identity. It is a difficult subject that we often want to sweep under the carpet and ignore. Do you think one day you can tacke this subject for me?