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Not my image, but I stayed in the Drakensberg mountains while I was

on a four-week Buddhist solitary retreat in South Africa. The cabin I was in looked out over a valley like this.

So beautiful.

I met a shaman in South Africa when I was out there teaching for a few months. It was in about 1990, a difficult time. I was trying to process my feelings about my son Benn’s diagnosis of epilepsy. This was the first time I’d been able to feel my own way through it all. He was seventeen, and his life changed forever. The neurologist’s statement was flat, patronising, distant. He told Benn that he should do what he was told, not ask questions. But Benn was still fully himself, stil determined to live his life, make his art. And he did that.

Benn made changes, he adapted. But safety, whatever that means, was his second priority, not his first. Being kept in cotton wool would keep him safe, but it would suffocate him too. He knew life was uncertain. He helped me to face that, to accept, to let him be, to love and celebrate who he was.

I was so aware of the stigmas around epilepsy: how people’s faces changed when they knew, how some doors closed to him, how many assumptions were made about him from the label, and how many questions there were. Did he still live on his own? Was he on medication? How did he cope? How did I cope? What if it got worse?

He went off to universtiy as planned. I learned not to ask about it every time I talked to him - I needed to see past the epilepsy. Epilepsy was not who Benn was. He wasn’t ‘an epileptic’. He had epilepsy, with very occasional seizures.

There are parallels with dementia. And here’s another parallel. I’ve been talking with a loved friend who has serious visual problems. We talk about becoming a supplicant, a recipient. We talk about our different peer support groups - and we both find how good it is to be with other people in simllar places. We both laugh with those people, and we both feel so much better for their company. Not that we don’t love and laugh with other people, but there’s something special in those groups, so much we share.

With my dementia support groups, I’m not someone different, not someone with something scary ‘wrong’ with them. We talk about dementia, but we talk about so much else too. I’m not ‘worse than’, I’m ‘with them’. We’re ‘us.’

When I met the shaman in 1990, I told him what I was struggling with. I asked him how epilepsy was seen in South Africa. His reply shocked me, woke me up. Somehow I’d gone along with the assumptions, even though I thought I was avoiding them.  His reply was a gift which lives on with me, still nourishes what I do, now that I live with dementia.

‘Someone with epilepsy is seen as special here. They are listened to; they are known to have special powers, special insights, which can benefit everyone. They are respected. They are cared for when they need that.’

One day, could dementia be like this? ‘Someone with dementia is special. We are listened to. We are known to have special powers, special insights, which can benefit everyone. We are respected. We are cared for when we need that.’

These are special powers, of benefit to everyone; these are people who matter to their own community. They are respected, loved as they are.

Maybe there’ll be a time when we all understand that, and welcome it – when doors will be open to us, rather than slamming in our faces. When people will listen to our voices, instead of focussing on the words we lose, the pauses we need. And more, could that be true for every one of us?

How would that be?

Sounds good to me. Good for everyone.

34 views3 comments


I love this post, Maxine. Thank you so much for writing it.


7 days ago

Sounds good to me too Maxine. Thank you. X


Beautifully written, Maxine.

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