I think there comes a point in time, don't you, where your idea of a person becomes fixed. And from that moment on the person will be thought of, remembered and seen only in relation to that single moment. Oh, that moment, that idea, is made up of the hundreds of thousands of moments that led up to it. But once it is fixed. It is very difficult to get unstuck.
I sometimes run into people from my long ago past. It's rare, but I do. I find sometimes, when in conversation, that I find it hard to be heard 'now' instead of being heard 'then.' Even though it is clearly 'now' and our relationship was clearly 'then'. My words are taken and forced to fit into the idea of Dave that was formed at some point in the past. It's like I want them to understand that past and present are as different as suggestion and declaration.
Oddly I thought of all this while driving down to Plymouth when we first arrived in England. I thought of it again driving through Wales. And even again while driving through the Peak District in Yorkshire. Everywhere I looked I was seeing astonishing beauty. Really. Astonishing. Beauty. But in the cars that flew around us, eyes of drivers seeing only destination, I wondered at the tragedy. I wondered when the stopped seeing what was a round them. I wonder if they too, at a certain time in their relationship with the landscape, they got an idea of it - and then never needed to see it again. Noticing not the changes in season, the changes in the colour and shape of the land. Seeing only what was there once, now in the present in a distracted sort of way.
This got me thinking of a man with Down Syndrome I met a couple weeks before leaving. He was a really quite remarkable man. A man of accomplishment, a man of humour, a man with a lusty temperament. But when we met, he and I, with his parents, to discuss something of some serous importance, it was suddenly like they couldn't see him, now, they only saw him, then. At some point in the past their idea of him got fixed. Stuck. And now no matter what he said they kept interpreting his words into their idea of him in the past. They even mentioned this! The notions he'd had. The dreams he had for himself as a child. He tried to hold his accomplishments, real accomplishments up for them to see. But they saw them, not as accomplishments but as toys he'd played with and managed to not break. It was so hard.
I saw Joe the other day. Not Joe of then. Not the idea of Joe. But Joe. He was locking the door of the Dairy and we were about to head to Shrewsbury. And I saw him again. I have worked hard, and I believe that Joe has too, to have my 'idea' of Joe become constantly loose, constantly unstuck, he his to interesting a man to simply end up as scenery unseen. I don't want to be that to him.
It must be hard for parents of kids with disabilities who live in a world where the idea of disability is stuck. Where people walk by me in a mall and see, not me, not even a version of me, but, instead, their version of what disability is and what it means. We all live in that world. A world with the idea of disability stuck somewhere between tragedy and pity. I believe this is why newly disabled people struggle so much with the enormity of change - not the change from walking to rolling but the change in setting. I AM STILL THE SAME PERSON ... one might scream but - while you may be just that, you are now a different idea. The idea is stuck. You are now the tree they drive past not seeing.
I wanted in that meeting for them, the mom and dad, to see him now. The NOW is so incredible. I don't know what the then was, I don't know what the moment was when their idea of their son got stuck. I don't know when they stopped seeing the scenery. But I hope, one day, like a day when the clouds part and people who've driven the same way for years say, 'My gosh, its so beautiful,' and realise again where they are and the beauty of their surroundings. I hope that one day, the clouds will part in their minds and they can see their son anew, afresh, and set a new, a brighter, and more hopeful, idea of him in their hearts.
I'm not stuck yet, but I think I might print this out and make myself read it once in awhile in case I am tempted ... :-)
The timing of this post is wonderful. It's something I have been struggling with lately. I hope you don't mind but I'm going to share this post with others because I think it's something that everyone needs to be mindful of. We so often get stuck thinking one way about people and it's nice to have a reminder once in a while that we need to forget preconceived ideas and look at the here and now.
I agree with Tamara, this is something that I need to re-read once in a while so that I am not stuck. I love what you said about Joe being too interesting a man to be thought about in that way. I have to remember this about my spouse too.
While reading about the parents though I did have a thought about what gets parents to that place where they are stuck in the ways that they think of their child. And I wonder what kind of things these parents have had to fight for, for their son. Often parents have had to fight for the very life of this child, have had to reel from the rejection of close family members, have had to fight for their child to have access to and belong in the ordinary things that we all take for granted like neighbourhood school or Boy Scouts. I think sometimes there is a trauma to the parents and that results in overprotection. It is scary to really see how vicious others can be to this child whose vulnerability becomes so terribly apparent. I wonder if that is how parents get stuck. I don't know how you get over that enough to see the beauty of what your child has become but you are so right Dave - you do have to, or you are stuck and so is the child. At some point you have to trust in the strength and resilience of that person.
Just had a similar conversation about this very issue yesterday. And not just as parents but as a "support group" getting stuck in the same literature of milestones and commonalities. We are not our diagnosis. We are so much more.
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