Perspectives

I 've taken down the last post, containing the very explicit photos of Joe and his various bits and bobs of treatment stuff. I hadn't really thought about much more than how I feel about it all, and what I can do to get the family through it. And, of course, to include friends and family so they could know what's going on. I hadn't thought how others might feel about it all.

And that's how I came to take down the post. At first I thought that it was censorship: that I was not allowed to show pictures. But it wasn't that. After all, there have been plenty of photos and some of them have been a laugh.

Then I thought it was shame. We can't be ashamed of how Joe looks, I thought. We should be proud. Maybe I was being proud in putting the photos up. It's not exactly something to be proud of. OK then, at least not ashamed. But it's not that either. We don't hide his shiny head when we go out. We don't lower our voices to a whisper to say the L word.

And it wasn't disgust either. The only time I feel anything approaching that is when I see photos of Joe fit and well. Lou has one of him and Jack at the start of treatment, and he looks healthy and handsome. And it's true, he was. But most of the time I see him as he is and I don't think anything of it, and he is healthy and handsome (no, seriously, he feels that way to me) except when I see what he was like before and then I just feel a bit melancholy. Anyway, he's obviously going to turn out handsome: heredity is a powerful force.

It turned out that it's pain. It just hurts Sue to look at him in pain or somehow disfigured and uncomfortable. To experience his mood swings and to think that this could be him. And the photos remind her of that. And maybe, in a small way, there is a little mumbo-jumbo: the more people who see him like this, the more like this he somehow is.

I hadn't thought about how other people feel about Joe's illness. I thought they fell into two camps: the ones who look after him, (which include me and who therefore, by my own limited emotional logic, all feel the same as I do), and the ones who want to know how he is and are sympathetic and concerned and interested. But it's much more complicated, because all those people who I thought felt just like me, well, they don't necessarily.

Yes, I know, Welcome to the world. And Duh, obviously. etc

It just wasn't obvious to me. It was a bit of a surprise. I just thought about how I felt and what I wanted to do. I think it's the teacher in me trying to teach everyone about it all.