Before I start, I havnt written this because I’ve been criticised or because someone has had a go at me. I’m writing it as a thought process after a conversation with another playmate.
In a previous world, not many years ago, the world was silent of those with dementia; we were locked away in asylums, left to die. Now we’re speaking, out it can only be a good thing. People will deal and react to speaking out in different ways, but the important thing is the voice . Who the voice belongs to is irrelevant …….
How we choose to use our voice is irrelevant. Some excel at campaigning, some locally, some nationally, some internationally…..all irrelevant. No matter what we do, how big, how small, it’s all equally important.
When we speak out we inevitably become ‘known’, our faces known, our actions scrutinised, our diagnosis questioned. It’s really exhausting simply living with dementia, our self esteem is stripped away from us when we’re diagnosed. So sometimes the evil side of being known can make us question what we’re doing, can reverse the good we’re doing. That’s the last thing we need or want.
Our physical self may be in the limelight, but what we’re doing is so much more and the physical face is irrelevant. What we’re promoting is a way of living, a way of adapting, a way of surviving this bummer of a diagnosis. A collective voice becoming louder as more speak out.
To some it must be difficult to see the fine line we’re walking along. If we’ve given others confidence to speak out, if we’ve taught others to be open, we must congratulate ourselves, we must celebrate. We mustn’t compare ourselves with each other, we mustn’t compete with one another, we mustn’t criticise one another, others will do that for sure. Instead we must stand equally together and recognise everything we all achieve.
As with life and people in general, all will respond to this challenge differently. Some will seek out the limelight, and that’s fine, others will be shadows in the corners, and that’s fine too. The main thing is we’re talking. Our collective voices in whatever way we choose or whatever way our talents allow, are all relevant, all going some small way to changing the future.
That’s what keeps me going.