As the editor for DAI, this week I am posting a blog written by Richard Taylor PhD, insightful as always, and full of honesty, bravery and wisdom. I personally have been a subscriber to his newsletter, which has not been written so regularly since he was diagnosed with throat cancer over 18 months ago, and I know I have missed his writings. I suspect he has missed his writings! Thank you for sharing yourself with us again Richard.
Hello, within the past couple of weeks I have stumbled across a new pocket of clarity of thought residing somewhere between my ears. I don’t know where it came from, I don’t know how long it will be here, but I do now realize I can’t think things through, I just sit down and start up my old selectric typewriter and I type. Formerly, I mulled over ideas, tested them against what I knew, researched my conclusions. Now I just sort of put a clean sheet of paper into the machine and start thinking out loud.
It feels sooooooooooooo good, to have some of my mojo back. Maybe it’s the new vitamin B-12 shots at work, maybe, maybe, maybe. I am trying to enjoy it, use it while the door remains open. I am now writing lots and lots, responding to other’s writings lots and lots. Most times I am eventually clear in my message/thoughts/position. Sometimes I realize I am not.
Along with a new found spontaneous focus/attention has come an ongoing nagging awareness that everyone does not share my sense of urgency in addressing the absurd/counterproductive/dehumanizing/neglectful manner through which the world is responding to the fact that half the world is now much older than the other half. And with that fact comes a divide in priorities, spending, political conversations, and from my point a view a very troublesome divide in how we treat/respect/appreciate/understand the respective other half of the population. Technology does not seem to have helped pull us together. Governments, mostly still populated by one half of the population, but increasingly elected by the other half, seem to respond to divide by dividing us more, and more and more.
But, as usual I digress/wander/repeat myself/reveal myself.
The sense of urgency inherent in realizing the dehumanizing stigmas that are currently being promoted by the very organizations who goals should be to re-humanize dementia has been refocused on how quickly can we find a cure, not how quickly can we improve the lives of folks living with the symptoms of dementia. Great minds, great government’s, great universities, great NGOs, giant drug companies who all are driven by their own needs to survive and holds lots of conferences in nice places and make speeches about going to war to defeat dementia – each and mostly all of these forces have aligned with each other to raise more money and support to “cure” dementia (actually Alzheimer’s to use their word). This wrong is wrong in oh so many ways, I can’t count them.
But back to yours truly and the reason I write this. I need to take some time away from the chase, away from the darkness, away from the dark forces. I need it for myself to fully enjoy these moments of clarity. I need it to make the semi annual readjustment to the fact that my own sense of urgency is not shared by many, many others. That is not to say we don’t agree of goals, it’s just the objectives/the strategic planning/the time lines/the willingness to invest more/to readjust priorities/to balance between thinking globally and acting locally/the devil that resides in the details of living life to its fullest and its best – these details need to be addressed, now. We need less “think tanks/groups/pieces” and more action plans. We need more evidence and reasoning, and less visioning.
Yes, awareness is spreading even as the darkness is promoted. Self advocacy seems to reside in the hearts, minds, feelings, and utterances of more and more of us living with the symptoms of dementia.
Yes, on the whole the world and some individuals are better off now than they were five years ago (speaking of folks living with dementia).
Yes there are pockets/moments/places/people/and more and more mostly smaller organizations who understand us, get “it.” In the long view of things, in the long run, things are still mostly slowing down in the wrong direction and/or speeding up in the right direction. It is fitful progress subject to lots of changes and pressures. For myself I am convinced there is not enough progress to make much, if any difference in my life. Perhaps in the lifetimes, the demetia times of my grand children – but it is only a perhaps. The current steps in the right direction are matched almost exactly by stronger (if fewer) steps in the wrong direction.
To say, to feel, to act like there is no need to hurry, no need to keep building pressure, resisting the forces of resistance is ill advised. We can quickly lose our gains with one set of election results, with one distracting international event, with a thousand other distractions and priorities. We shouldn’t have to compete, but we do.
I’m taking a month off/away/observing/writing/hanging on – preparing for what will probably be my last hurrahs come Fall and next Winter.
Thanks for wandering around with me and this posting. Back soon – with more.
Copyright: Dementia Alliance International and Richard Taylor PhD
Editor: Kate Swaffer