January 11, 2013 at 1:35 PM (Uncategorized)

So, it’s been twenty years today since my spouse passed away…and I’ve been trying to think about what to talk about…no worries folks this isn’t going to be some grief stricken rant.  Done those.

A good friend of ours said that a large part of our marriage was about sacrifice, and he’s right in a way given how we struggled through Cerebral Palsy and Hemophilia and AIDS and cancer….and tried to back each other up…emphasis on ‘tried’ because we were dragged into that role and therefore imperfect at it.

But there were a couple of other important things our marriage was about…one that I pushed for and one that he exemplified.

His was joy.  Joy in the sense of ‘joie de vivre,’ just running around finding things to be enthusiastic about and jumping in with both feet.  It was the clear unsullied interest of someone young.

I’m a brooder and a worrier and my corner of the world always has darker colors to it, so he was a good balance to me in that sense.  I needed somebody to drag me out of the house, put me in the car and just go somewhere, to clear the cobwebs of problems out of my head.

It’s also almost always a good project to learn someone else’s hobbies. He had plenty, so I learned some of them.  Maybe a hobby you didn’t think much of when you first heard about it.

[for example: “Indoor Soccer?”  “What in the hell is THAT?”]

But when you decide that it will be more bearable if you actually know what’s going on, and take the trouble to learn…there are parts of it that can be fun…and doing something together should be something both bring a good mood to…pouting about it pulls you apart instead.  So I saw something he was joyful over and tried joining in.

As for my contribution:

Even before I re-met him, high school and college were one long list of people I would fall for…and who would push me away.

“I like you…but not in that way.”  Variations on that theme.   One guy even said, “When I first saw you I was repulsed, but you’re actually kind of cool.”  Charming.  People with disabilities aren’t generally viewed as datable. (Although I think ‘Push Girls’ might be on the way to changing that.’)  I made a lot of great friends, but I knew I deserved a relationship.    That was far far back in my head…but definitely in there.

When I got involved with him, we had a great connection, and if anything came out of that at all it’s that:  Pursuing intimacy is for the different, too.

My friends might dispute this, but honestly there was something else important going on about that quest for intimacy, not just our hormones on overload…

I had been given messages by society that I would never have such a thing, but his situation would prove to be worse.

Except for his mom and sisters, people became afraid to touch him, to be near him.  Mentally they would stand with him while physically their body language was screaming that they wanted to be anywhere but next to him.  Do anything but shake his hand.  Give him a kind word, but not a hug.

I made a conscious decision that he was not going to be someone that was never touched.  Never held.  I remember kissing him goodbye in the hospital once, on his forehead, that happened to be sweating, and watching his best friend visibly draw back in fear at what I had done.

It’s ok if intimacy is a goal to strive for.  Everyone’s life has several dimensions.  Why should one automatically be excluded because a body or method of movement is different?

I live for the day when those  with disabilities, get dates have relationships, get married — with relatively little social exclusion or drama and NO ONE says anything disparaging about it.  We’ve made progress in twenty years, and so I have hope.

Joy, intimacy,hope, and unfortunately, sacrifice.

If that’s what our life together was here for, then well, that ain’t all bad.


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