So often at conferences, events and even on social media….we’re speaking, in the main, to the converted…..those who get it. That’s why I’m very selective as to which events I attend now. I want to speak to people who havn’t heard it all before and who may be hearing it for the first time. That’s also one reason for writing my book.
My article published in the New York Times (I don’t think I’ll ever get fed up of saying that sentence) produced many kind comments. I only read a few as I know full well that I should never read comments, but the one that saddened me most was:
“I am a little suspicious when someone writes a book about their dementia and continues to work. I just wonder if her condition really constitutes dementia.”
You think you’re finally getting there, finally changing perceptions, and then along comes a sentence like that which shows how much is still to be done.
I actually felt sorry for the person. I’d hate to comment on something which I knew so little about. That person must have thought they knew lots to make such a comment…..that’s what saddens me most.
I often worry about reblogging about the same subject but one new reader might be seeing it for the first time but I’ve learnt how unimportant that is and many from the past might make another appearance.
In the grand scheme of things we’ve only reached a small percentage of the population so there is still a long long way to go.
The more people are diagnosed early, the more they can adjust and adapt before the later stages arrived. Four years ago, when I was diagnosed. I had days when I felt dementia free because that is the how it is. Some playmates, on those days, comments how they think the clinicians have got it wrong, only for some days later dementia slaps them in the face and announces its presence loud and clear.
For me the number of dementia free days have become less and less as the years have gone by and now it’s with me all the time, dementia free days a distant memory – that’s been my progression ……but my typing has allowed me to keep my intellect in tact and I’ll cling on to that for as long as I can. And that’s what people fail to understand. We’re not stripped of all capacity from the point of diagnosis. Some decline quicker than others for various reasons.
That’s why I believe it must be so hard for those supporters to hear about us surviving each day as we do when their loved ones have declined quickly. It doesn’t make sense to them because their experience is very different.
We have a complex brain disease, our experiences are individual. Image the brain as a string of fairy lights. Each fairy light representing a different function of the brain. Some lights flicker on and off – dementia affecting our ability to do something one day and then we’re able to the next. But when the light fail altogether that’s when dementia has won and has taken that ability away for good. But different fairy lights flicker and fail for each of us. That’s why I can type and other can’t; that’s why they still cook and I can’t; that’s why they still feel hunger and I don’t.
Our experiences are different.
Finally, going back to the article in the New York Times….. the image they had accompanying the article looked suspiciously like a man – why a man when a woman was writing the article……but then me thinks that’s a whole new topic in itself…….
You can hear me speaking a shortened version of this blog on Dementia Diaries – a wonderful resource where many people with dementia are able to use their voice to be heard….