Embrace Yourself

Language is a wonderful thing. It has raised us up to the pinnacle of the animal kingdom and has come hand in hand with our intelligence. It gives voice to our thoughts and allows us to externalise our memory and to give our ideas and memories a life beyond our bodies and our mortality. It also shapes our thoughts and actions.

Today I wish to give you an idea. An idea that I hope may shape your thoughts and actions, and give hope to a better world.

I believe that today, when the means for communication are greater than they ever it has been in our history, we take less effort and less responsibility for what we “say” than did a “caveman” in explain how he banged two rocks together to make fire to another proto-human.

Consider these examples of language that are referring to dementia.

• A Tsunami of Dementia.
• A growing tidal wave of disease.
• A silent killer.
• Defeat Dementia, and my favourite
• Fight Dementia!

This list could go one for hours (much like my presentations, if left unrestrained), and I would really like to elaborate on the thought I wish to share.

It comes in two parts. The first is that we must “Fight” dementia or “combat the disease”. I am older enough to have witnessed (Live on the news – not first hand) both the Vietnam War and Neil Armstrong Walking on the moon, and young enough to have avoided conscription. I have a strong spiritual connection with the protest era and consider myself a pacifist. One thing I have learnt in my life is that war resolves nothing, it serves only to diminish us all and to take some lyrics from that era

“I said, war, good god, now, what is it good for?
Absolutely, nothing
Say it again, war, what is it good for?
Absolutely, nothing, listen to me
War, it ain’t nothing but a heart breaker
War, friend only to the undertaker, war”

(I challenge you to find the writers and performers of this and to not be moved by any of the performances if it)

It serves nothing but death. Fighting doesn’t result in a gain, just mutual loss. All conflicts use propaganda, and demonise the enemy to degrade them to less than ourselves, to a status of “sub-human”. Now back to dementia. We need to understand Dementia before we can do anything effectively to diminish its impact.

Using such hyperbole in relation to dementia or describing dementia is a dis-service to us all, and an abuse of language, that if used in the stone age may have kept us in caves for millennia more.

Yesterday I attended a conference on Dementia and one thing was obvious, a huge amount of money and a great deal of effort has been thrown at a pharmaceutical “cure” with zero return. Some people are happy with this because they are doing “something”, but they don’t have dementia. What was also obvious was a consensus of opinion that we know very little about dementia. We are getting better at understanding what the pathology of the diseases look like and how they progress, but know next to nothing about the causes. Risk factors are being identified and indeed there is much we could do to diminish our exposure to risk, but not to treat those of us lucky enough to already have dementia.

What causes dementia?

I do not, nor would be able too, understand on a biochemical level understand the processes that lead to our pathology. But one thing is clear to me, and that is simple, Dementias causes are rarely external or the direct result of a deliberate act on our part. To put it simply, the disease is not caused by such things as the bight of were-mosquito or “bug”, nor is it likely caused by us undertaking risky behaviour. It comes through a failure of our biology. This is not to say that we may not soon understand actions that could prevent or mediate this biological systems failure, but today we do not, but at best have “informed” guesses.

This failure is our own, but not our fault and definitely not of our choosing. If we wish to fight dementia, then we are in effect fighting ourselves. The result of this approach has been to further marginalise us.

Now here is the radical idea. We need not to fight dementia, but to embrace it!

I say this for many reasons.

Firstly, if we collectively acknowledge our disease, it will help break down stigmas. Indeed, this is the first step we need to do as individuals in coping with the disease and if others can acknowledge that we have dementia, then it is a major step in helping us. This will help to keep us functioning closer to the way we were, and for longer. It will help lead to a more considered and open approach to both research and treatment.

Secondly, if the causes of dementia are our own internal biochemical failures, then we are literally fighting against ourselves. All we achieve by this, is lowering our own self-worth and slipping closer to our own demise.

Lastly I wish add another radical idea. Dementia can be good for us! (At least not all bad!)Personally I have found many beneficial things to come from my dementia. Some directly from the disease, and some a “social by-product” of the disease.

These beneficial thing include the freedom and liberation I have from the realisation I have a terminal disease. Now I talk with death on a daily basis. We converse as equals. I have acknowledge his ultimate claim and he no longer holds my fear against me. We talk with mutual respect. Indeed he has given me a gift. I know that beyond my death, part of my body will continue, no longer animate but still able to contribute to our collective understanding of dementia. In my death I will be able contribute research.

(I also ask you to donate your brain to research – they generally don’t collect until you are finished using it)

My unravelling neurones have also feed a lifetime of emotion. I have never felt such powerful emotions. You may know joy and you may know sorrow, but I have never experienced such a powerful feeling of joy and sorrow combined, as I do now when I experience meaningful music. It is liberating.

Dementia has given me a Cause, it has given me meaning, it has given me motivation, and indirectly it has given me means. I have acknowledged it will take my life but I see no reason why we all shouldn’t embrace it.

My point is simple,

Embrace Dementia.

Strive to understand its causes and its effects. Don’t fear Dementia. Do not fear or shun us. We are not dementia, but merely its messenger.

I would like to conclude with few words from Joni Mitchel’s 1970 composition “Woodstock”

“We are stardust
Billion year old carbon
We are golden
Caught in the devil’s bargain
And we’ve got to get ourselves
back to the garden”