Don't think about the bears

The book I didn't expect to write is growing. This blog is part of the growth, and I'm grateful to the people who support it, friends but not only friends. Charlotte Gann is alongside me in the project. I don't know how it will begin, or where it will end. I don't even know what it will be, but it seems to be some kind of memoir. There are already lots of words. Charlotte has stored them away because of my crazy non-filing system. I often write them early in the morning, before the day takes over. I'll post some of them here. I hope you enjoy them and I'd love to hear from you in the comments. The photo is by Alan Wilson..

'Try to pose for yourself this task: not to think of a polar bear, and you will see that the cursed thing will come to mind every minute.'

From Fyodor Dostoevsky's 1863 story of his travels in Western Europe.

Kittisaro, a Buddhist teacher, is a friend who I worked with when I was teaching about psychotherapy in South Africa in 2001. He described the polar bears another way. I’ll try to bring back how he talked about it, though I can’t do it his way.

When I attend to everything that’s happening in my mind, thoughts come and go, there’s a whole world of images and words and sensations and feelings coming in and leaving. They’re all around me. I might call them negative or positive, I might prefer some of them or feel neutral.

If I decide that I mustn’t let myself think about one thing - say about polar bears, say about dementia, say about loss, say about dying, it’s like shutting the door on one aspect of that whole world of thoughts. What happens as I make that decision? The door gets bigger. I add more to what’s behind the door and shut it, firmly.  The door opens, again and again. Those polar bears are everywhere. I push them through the door, and I put out a hand to keep the door shut. That door is bulging. It’s bursting to open.

As he speaks, Kittisaro pushes the imaginary door to keep it closed. He has to push it harder and harder. The push starts with his hand, but then it has to be his arm, his shoulder. His whole body leans into the push. His whole energy is dedicated to keeping that door closed. His body begins to hurt.

Everything else is shut out: that world, that experience.  There’s only the door, and everything that’s been shut away behind that door. Or is it really shut away? Which side of that door are we on now?

At one level, thinking positive helps. It’s a mantra that’s spread across our culture. Just think positive. Don’t think negative. Positive must be inside the door, that’s all that’s allowed inside the door. No polar bears in here.

In traumatic stress, something’s happened that’s threatened our sense of who we are, that seems as if we could die. I've been there, not so much now. We’ve had to shut that door very hard, so hard that the door is locked, barricaded. We’ve got our back to the door, and every muscle, every moment is dedicated to keeping it shut. Our whole psyche banishes the memory, our world shrinks back. That works to some extent. That helps us survive. But the thoughts come back, as flashbacks, triggers, body memories. The door leaks, the walls around the door begin to crack. Life becomes harder and harder to live. Positive thoughts won’t arrive when we call them. All we can do is strain to try to keep the others away. We're exhausted, our muscles ache, we can’t sleep, we have to keep that door shut. It’s essential. Everything is at stake. Trauma is a heightened version of the polar bears’ invasion. Trauma needs skilled and special ways to unravel that barricade, slowly and safely.

'You have dementia. It could be worse. You could have cancer. You could have motor neurone disease. You could be in a war zone. Don’t think about it. The sun’s shining, there are so many blessings, think of everyone who loves you, think of the happy years. I’ve got to go now.'

Behind the door

Whenever dementia is presented, whoever’s presenting it, dementia is already behind the door. Our culture has already shut it away.  We don’t talk about dementia, or we’ll put off talking about it for as long as possible. We’ll say dementia isn’t there:  everyone forgets words, everyone forgets what they’ve gone upstairs for. Then when we have to talk about dementia, we have ways to talk about it. Dementia is dying, again and again and again. Here’s a pile of leaflets to tell you about dementia. Dementia is the worst that could happen. Dementia is worse than dying. Let’s talk about something else, anything else. Except dementia.

Cancer used to be behind that door. Cancer was the worst. People died, people still die. Then things changed. We began to see people living well with cancer, surviving for years, having their lives back. Lots more is still needed, more research, more understanding, more awareness, about cancer, about much more.

Dementia is hidden away. Dementia is behind the door. Dementia is behind doors we lock,  and we sometimes literally lock people with dementia in. Dementia prods at what being human is. Dementia demands something special from us, something risky.

This could sound over-dramatic. Maybe it is. But the more we try not to think about those polar bears, here they are. They’re in the garden, they’re in the park, they’re in the care home we walk past every day, they’re in our living room.

Some people go beyond this, but it's here

We’re so afraid of dementia that we banish people living with dementia. Those of us who are living with dementia are an embarrassment, people don’t know how to talk to us, they don’t know what to say, so they keep away. I’m here to write about dementia, to talk about dementia, because dementia is unspeakable. I’m repeating the word, because dementia is the polar bear that comes back again and again, that cursed polar bear we try to banish from our thoughts.

Some of us living with dementia sit in the pub with our friends, and nobody talks to us because they don’t know how. I know someone this happens to regularly, and it hurts him, again and again. He loved going to the pub, loves his friends. Now he doesn’t want to go to the pub. It’s too noisy, there’s too many people, it’s exhausting and there’s no escape. If somebody talked with him; if somebody recognised how difficult this experience is for him, and understood why he sits in a corner, staring into his drink, sidelined, wishing he was at home, they might discover something. They might suggest a quiet place two or three friends could meet up with him. They might give him space to talk, speak a bit more slowly, include him, be led by him. They could encourage him talk about what’s happening, what matters to him.

We’re an inconvenience. We remind people of something we’d all rather keep behind that door. There are interesting ways of looking at how all this has come about - the book American Dementia has some fascinating and chilling ways of looking at how that came about.

No blame, no accusations

Nobody specific is to blame, no individual. This isn’t about blame, about pointing the finger. As people live longer, there’s more dementia. But there have been people working for years to change the way dementia is seen, to understand dementia. I’m involved in an international group called Re-imagining Dementia. There’s the Dementia Empowerment and Engagement Project, because people living with dementia are disempowered and unheard; we become disengaged, we are cut off. People living with dementia are writing and talking about their experience, particularly Wendy Mitchell, but others too. There are people who try to work in what’s called a person-centred way, to see past dementia but not to ignore it. But dementia is still demonised, still locked away.

The World Health Organisation has recognised dementia as a disability, and in principle the UK recognises that, like many other countries. But we don't seem to take it on board. We don’t talk about dementia rights, we don’t enshrine dementia in a set of lawful codes of behaviour. We try to get rid of dementia, its inconvenience, its costs. We limit our support, we focus on an elusive cure rather than caring, connecting, supporting.

Making a change

Every time any one of us speaks in a different way, listens in a different way, we make a change; for the individual we’re talking to or with, for the others around us, and gradually for the wider community. We can all change what’s happening. But we need that change to be lived out through support and training, and in many other ways, if dementia is going to be a part of who we all are, something to add to who we are, something that can help us all to grow and change, something where suffering can be reduced and lives transformed. We have to open ourselves, not only to dementia, but to much more.

If we open the door, the polar bears will take their place at the table. They won’t be cursed, they’ll be beautiful and powerful and fascinating. We’ll all be enriched.