Suffering is optional

Whilst I have not been publishing each day on my original blog since Christmas Eve, and won’t for the rest of the year, I realised, thanks to an electronic reminder, that I have not published anything here for December.

The goal for this blog when I first set it up in September this year was to post at least once a month on Living beyond dementia™, and so, here goes for the last week of December 2015! Most of all, I want my last blog on this site to be about one of my biggest wishes of all, and one that I truly believe can and will change the experience of suffering from dementia, to one of Living beyond dementia™, for so many more.

There are many ups and downs of living beyond dementia, and as always, the best and the worst of ourselves, and others can surface, especially when the many myths and misperceptions of how one should or should not be living with dementia, or as many still prefer to think, only dying and suffering from it, as is the pathway many insist is the only possible way forward after a diagnosis.  Mostly, it is the media and family care partners or supporters who watch us change (not fade away), and who insist we are all sufferers, as that is what happens to them as they watch us change and die, or is what helps them sell their ‘news’. Many who also tell us we have no right to ask for language that is respectful, meaning respectful on our terms and our experience, not their terms or experience.

There are even a few people with dementia who argue for their right to publicly label themselves (and therefore all of us) sufferers, and yes, of course, that must be ok, as we all have the right to express the moments when we suffer. But labelling ‘us’ publicly in this way, is unhelpful, for the many of us trying to live with and beyond, not only die from dementia. It ensures the majority of the experiences of others diagnosed with a dementia, starts from the notion there is only suffering ahead, rather than from the real possibility there is life, and even a good life to live after a diagnosis. It colours the experience negatively for us all.

The Prescribed Disengagement®™ handed out to us all, no matter what age we are when diagnosed is unhelpful, and I also believe to be unethical. It ensures those of us with dementia head down the road of suffering or sufferer and turns many into victims. It also ensures others see us as sufferers and victims.

In an article I read this week in the New York Times, The Real Victims of Victimhood by Arthur C. Brooks, it says:

“’Victimhood culture’ has now been identified as a widening phenomenon by mainstream sociologists. And it is impossible to miss the obvious examples all around us.”

Later on he says:

“Victims and their advocates always rely on free speech and open dialogue to articulate unpopular truths. They rely on free speech to assert their right to speak. Victimhood culture, by contrast, generally seeks to restrict expression in order to protect the sensibilities of its advocates. Victimhood claims the right to say who is and is not allowed to speak.“

In light of this article, it would, I feel, be reasonable to suggest as I have done previously of my belief that the suffering pushed onto us and the taking over by care partners demands we become victims, and then that many of us take on the learned helplessness role, the same thing that happens to small children when we do too much for them. By constantly declaring we are all sufferers, it virtually ensures we become victims and further disables us, thereby encouraging us to take on learned helpless, and become much more demanding of others to ‘care for us’.

It is the voice of others, loudly declaring and arguing that we are all sufferers, and who seem most intent on trying to advocate for us rather than allowing us to speak for ourselves, and accepting that our experience may in fact, be different to theirs, who are doing us more harm than good as our advocates. In doing so, they support victimhood and further disable us; as if the symptoms of dementia are not enough to learn to live with.

So in closing my year of blogging on all of my sites, I will end with this poem A Christmas wish,  written and published a few days  ago on my other blog. As I feel it is so very important to all of us wanting to live beyond dementia, it is the best message I can leave you with…

Yes, I am suffering…
but only some of the time
not every moment of every day

And, importantly…
not always from dementia
more often from the language of dementia

The symptoms of dementia
do not consume me
one hundred percent of the time

Only some moments
of some days
and definitely not all days

So why then must others
with and without dementia
exacerbate the suffering and stigma

By labelling me
a sufferer
ALL of the time?

Please do not label me a sufferer
This is my one and only
Christmas wish.