Being a Bloke of a Certain Age

Every one of us with AS knows how tough life can be. Every one of us must live with AS – even when asleep – even when having good days. And each of use, male and female, will have our own individual demons to struggle with. Or, maybe not so unique at all.

I’ve been thinking a lot lately about how, as a 50s child, as a male 50s child, I have always been taught not to make a fuss. To hide pain and discomfort. To be ashamed of weakness. I’m sure this is not exclusive to males. I am sure there are plenty of females who struggle with the same thing. But back when I was a kid, boys had to be one way and girls had to be another. Each gender had its own burdens. Mine was to ‘button it’, ‘grow up’, ‘be a man’. If I did cry or become frustrated or upset, I was called a sissy, or a big girl’s blouse, and any other number of phrases designed to emasculate me.

And because I was raised never to make a fuss or show signs of weakness, it’s hard to ask for help now without feeling like a failure. Talking about AS – other than on here with you good people – always makes me feel like I am being self-indulgent. There’s a constant nagging voice in my head which repeats: Don’t make a fuss. Don’t make a fuss. Don’t make a fuss.

And so I question myself. Maybe the pain I’m feeling isn’t as bad as the pain others are feeling. And maybe it’s just that I am weak and so I feel pain more than someone else might. Maybe it’s best I button it, after all. That’s the manly thing to do, isn’t it?

I went for a coffee with my mate last week and he asked how I was doing? And I did the usual and said I was doing fine. But then I started to explain how I didn’t always feel fine, and I rarely feel completely fine, nor do I feel completely comfortable. And there was this voice in my head shouting, he doesn’t really want to hear this stuff. He’s being polite. And so, rather than off-load, I trail off. Change the subject.

And because I feel like I’ve always got to step up, I do things that I shouldn’t. I insist on doing them. I avoid inconveniencing people, at all costs. For example, I am embarrassed if I can’t lift things which I shouldn’t be lifting. So, I lift them anyway. And then I pay for it. It hurts but I say it doesn’t. Some days I really hate my AS. And some days I really hate me. Not so much as I’d do something silly. But enough to rattle my confidence, lower my self-esteem, shift me from a happy place inside my head to a not-so happy place.

As luck would have it, I’ve always bounced back. So far anyway. But as I am getting older and my body gets weaker and I seem to struggle that little bit more, I do wonder where it will all end. I am afraid of that. I am afraid of where I might wind up. But whatever happens, I’ll give it my best shot. Writing these things down and sharing them helps immensely. So, if you’ve made it this far, thank you.

Oh, and just so’s I don’t end on a downer. I’m feeling great today. Optimistic. Upbeat. In good spirits. I hope you are too.