I’ve changed my mind…

I’ve changed my mind.

I don’t have dementia any more.

It’s really liberating.

I no longer feel like I belong to a disability group.

A group of 850,000 people with mental illness for whom there’s no hope.

I decided this morning when I woke up.

I have brain disease. Not dementia.

Just like I have heart disease, and bone disease, and vascular disease, and kidney disease…

I have brain disease.

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Little tiny parts of it are being enveloped, strangled, and killed off, and gradually these are growing and coalescing into larger areas which are meant to control functions that are normally automatic.

I’m no longer demented. I’m not suffering. I’m just living and dying.

As is everyone.

From the moment we are born, or even before, things in our infinitely complex bodies go wrong. And some people die in infancy or childhood, some as young adults, some in their fifties.

Most of us get past seventy. But we’re all not as we once were.

It’s life. And death. Of tissues, cells, muscles, bones, organs, and brains.

And for the most part we recognise and accept the age related physical diseasing of our bodies. We know we will get old, we will creak and stiffen. There will be things we can no longer do.

I wish I could still climb steep hills and mountains, and I harbour a belief that one day I will do so again. But I accept, reluctantly, that my heart and arteries are diseased and at the moment I can’t get enough oxygen into my muscles to carry me up there.

I still walk miles on the flat with Lupin. And enjoy it.

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What, then, is it that makes our view of dementia different? Why is there this cultural, deep seated revulsion at the thought of developing the symptoms known as dementia?

I think I have cracked it.

It’s because we don’t want to lose our minds.

We don’t mind losing a finger, or limping, or taking tablets for diabetes. But if you can’t communicate, speak your mind, and think, who are you?

And we have deep seated cultural, but largely unconscious, fears and prejudices about people who are different from who we think we are.

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I am no different, and I struggle with my unconscious bias and prejudice which I suddenly see spring up from time to time.

Why does mental illness get much less funding per person than physical illness?

Why in the recent past were people with mental illness locked away out of sight?

Why do we squirm and look the other way when a person talks loudly and randomly on a bus or train and doesn’t follow the social norms?

We don’t like it because we’re frightened and because they’re different from us. And we think thank God it’s not me and turn away.

So, let’s think about brain disease.

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Physical damage to the brain, that gradually slows and then prevents bits from functioning as they should.

It’s no different from arthritis.

We just think it is different because we see it differently and we are frightened.

If we lose our brain we lose our mind.

And if we lose our mind, who the hell are we?

As I said last time, if I lose my memories and reference points, my map of me, because I can no longer access it, who am I?

It’s frightening.

But to understand that it is just disease of the brain, not madness, helps me to approach it more calmly.

And it would help us all to accept that we’re all diseased and we all live on withm our diseases.

As best we can.

As we choose to live our lives.

No more demented suffering. No more struggling. No more death sentences.

Just being alive and living as best we can.

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Let’s welcome our differences.

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Or, at the very least, ignore them.

9 thoughts on “I’ve changed my mind…

  1. Pingback: “I’ve changed my mind” by George Rook | Creating life with words: Inspiration, love and truth

  2. Thank you, George, for sharing your thoughts. There is great power that comes from accepting your brain disease and at the same time knowing that even with a brain disease you are still your essential self. In our 19 years’ of experience of caring for people living with a form of dementia; right until you die you will have changing degrees of capacity, knowing, understanding and memory. Its useful for us to think of dementia as a form of disability because I like the thinking “how in our support and care can we compensate for, accommodate or work around this reduced capacity? How can we make it easier for the person?. I like Professor Cameron Camp’s questioning ‘where are the disability ramps for people with a dementia?’ Kate Lambert, CEO, Daughterly Care, Sydney, Australia

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    • Thank you Kate. My concern about disability as a label is that it is a disabling label. And, where does a slight flaw become a disability? Who doesn’t have a physical flaw? We’re all different, and some differences are more marked and visible than others. So I prefer to avoid the label. Everyone should be able to and welcomed to enjoy active participation in their communities. Regardless of labels. Cheers

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      • Yes, I see that point of view too George and appreciate the logic. I believe people with a form of dementia are more often than not underestimated by their families and by society generally which I guess is what happens when you have Prescribed Disengagement (Swaffer). And yes, we are all different, all perfect and at the same time, we all flawed in our own unique beautiful way. I really enjoyed your blog.

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  3. George, I love your awesome spirit and can feel the energizing joy of your positive nature. How empowering! I am going to share this with my parents, both of whom are living with dementia and Alzheimer’s. I know it will strike a chord deep within them, and I thank you for this eloquent gift to us all. With many of us predicted to have some form of dementia, we can all benefit from your approach. Rock on!

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