Why be Quiet?

Maxine Linnell talks with Charlotte about her new blog: mapping her experience of dementia.

Charlotte Gann: A recent poem-entry on your blog ends with the words ‘Why be quiet?’ I love that phrase/question. Perhaps we could start this Conversation with you talking a bit about why you’ve set up this blog?

Maxine Linnell: I was diagnosed with early Alzheimer’s last September. We don’t talk about dementia enough. There’s so much fear about it, and the fear doesn’t help. Maybe dementia is next to dying as a taboo subject. That makes it hard to deal with. Writing comes naturally for me, and the blog form opens up possibilities. A blog can last as long as it lasts, and can change and develop over time. The posts can range from poems to journal to information and images. The odd rant too.

Most of all, visitors can leave comments. Maybe conversations will develop, maybe this could be a shared space. It feels right for this time, and for what I’m experiencing. An experiment, a small adventure.

CG: I love that term, ‘small adventure’ – the combination of those two concepts! And yes, I can see why the blog form seems right: changing and developing, the variety of entries, and the opening up of conversation. A vehicle to talk about something we don’t – dementia – from your own lived experience, as it unfolds.

This seems pioneering, to me. You’re mapping territory?

Perhaps we can’t do a lot, necessarily, each one of us, but peg out our tent on the side of a snowy mountain. Say ‘Here I am’; invite others to reply ‘Hello’, or ‘I’m here too’… Isn’t that really something? (Why be quiet?)

You’re bringing your own awareness to your own experience, and I know awareness is really important to you – has been, through life – as a practice? That, and crafting – as a writer, poet, editor?

ML: I like the idea of pegging out a tent on a snowy mountain. It’s good to wave at passers-by, maybe talk for a while. I don’t know if anyone else has done this with poems, but other people with dementia have blogs. Since I started looking online, I found some amazing people who’ve had dementia for twelve, fifteen years and are still out there doing stuff. They give me a lot of hope.

Yes, awareness is pretty central. I don’t know how else to be now, but I do take breaks, watch TV, play games, grow veg, spend time with friends and family. Awareness seems to be a way through. I learned through Buddhists, absorbed Buddhist psychology and practised as a Buddhist psychotherapist for nearly thirty years.

Writing is a practice that helps me stay aware, guides me through. I learned to be quiet as a child, and writing is my way to reflect, work through, find meanings. But I write to be read. I like to make the writing clear and simple – it helps me to simplify the thinking too. My father was a stickler for spelling and punctuation, I share that with him.

So dementia is partly a drift into non-awareness, and there are gaps in awareness sometimes now. I won’t always be able to articulate it all. I’m looking to support myself as that process happens, plan and establish rhythms and strategies to make it all possible.

CG: I like the fact you’ve looked and found inspiring others ahead of you on the path. And that awareness itself is your ‘way through’.

Also, the quiet reflection – conversation with yourself – of your writing process too. (I also had a father who wrote and spelt and punctuated. I shared that with mine, too.) And yes, to be clear and simple in our writing.

I guess ‘awareness’, among other things, means developing a trust in our own perceptions? (The kind of practice we develop on retreat, and suchlike.) The ability to watch whatever’s happening around and in you, having a self who can attend, including watching the discomfort.

ML: You put that so well – I like the idea of being a ‘kind witness’ to it all.

CG: I loved the piece you posted recently called ‘What if? (Part one)’. It describes a painful and disorientating journey into dementia for someone who perhaps isn’t able to trust their own awareness, so leans heavily into others to notice things for them? Shame also rears its cruel head, and all the noisy, painful emotions that crowd our views: ‘the difficulties with the people you love, and their reactions to you’.

With awareness, perhaps you can more easily watch the ‘drift’ come and go? Notice changes. (I also loved that word ‘Losts’ you coined as a title for one poem on the blog…).

While we’re talking I’m picturing the blog itself as a changing landscape – you’re filling in the details as you go? You couldn’t do this so easily with a fixed, published object like a book.

ML: Yes, I have no idea what this landscape will be like. There’s the medical map, of course, and I’ve made decisions about what I’d like for the future. I don’t know how far or how long I’ll be able to keep the awareness. A close friend and poet, Kate Ruse, died two years ago with dementia. The experience of being alongside her helped me to know what I wanted for myself. But that’s nothing like going through it from the inside. I’m going to find out for myself now.

A blog seems so right. There’s no goal, there’s no shape, no planned story. The blog can adapt as I change, and I’ve no idea when or how that will happen. Everything really is work in progress. And maybe recording this adventure can offer something to other people. I’ve heard from a number of people who’ve read it, many who wouldn’t usually read poems.

People with dementia are sometimes treated as not having a voice. I want to do what little I can to change the assumptions, because they’re sometimes self-fulfilling. If people interrupt and speak for you, it’s easy to feel you can’t speak. I had to learn to speak out throughout my life, and I know what not being heard is like. It hurts, and it hurts now when I get defined by the dementia.

CG: I really hear this. The hurt around not being heard. And how, since you got your diagnosis, people at times overlook you and see only your diagnosis? I know you were rattled recently when you wanted simply to say something from yourself, and someone else took that as you asking for help. (This is what I understand as ‘caretaking’ – as opposed to caregiving – and yes, isn’t it so disabling.)

I anyway hate the way ‘airtime’ is allocated in our Western world. Anyone who’s ‘different’ is deemed threatening, I guess; and people with dementia are among those ‘we’ would rather not hear from, in order not to confront our own fears? And you were alongside your friend Kate as she journeyed through dementia, and that brought you insight, but it’s very different, living the experience in and for yourself… 

It’s generous and brave to share this journey. It’s also part of who you are – have been since childhood – to speak out? As a writer? (I know it’s been galvanising to me, the impulse to share my ‘information’ while I’m still here; not be silenced by ‘the group norms’, as I sometimes think of our collective impulses.)

And I like the campaigning or activist aspect of your undertaking. To refuse to be silenced, or pushed into the shadows. 

Is there also something rich about giving yourself this ‘room’ to write in? I discover something palpably rich and real in that, when I give myself the same. (It’s what I’ve been doing this last week; and others have even joined me in it!)  

Perhaps the blog itself is like a room or set of rooms – an extension – a place you go to explore this whole experience and subject?

ML: I love cabins, so I can imagine the blog as a cabin in the woods! There is something rich about it, yes. A thought comes and I follow it around – maybe there’s something here which is worth writing about. Or a word arrives, an image, something I hear or see, and although it’s perfect as it is, I can unfold it by writing and let it emerge. That’s how poems arrive for me, and that’s where the work of them begins. I love that process of sifting and clarifying.

I’ve felt silenced and silenced myself. There’s a pattern of trying to adapt and fit in, then eventually feeling overwhelmed and speaking out – or flouncing out. In the end I can’t stay silent. That’s not always comfortable, for me or others.

I feel a bit scared when I publish a post – the usual doubts flood in. Fear and self-doubt feel important at a certain stage, so long as they don’t take over. They help me to measure if I’m being real, if something matters, and if it’s worth the time other people might take to read it. Is this writing anything beyond a personal experience – does it speak to something bigger? Does it sound, resonate? Does it touch something deeper?

The richness of a blog is also that people are telling me what they think, so I can learn from that. I hope I’ll never stop learning.

CG: Oh yes, this sounds familiar to me: much of it! And that interrogation of my poems before ‘releasing’ them; the fine line between that constructively critical process – which I find deeply stimulating and satisfying – and self-judgement and silencing.

I’ve been thinking a lot about compassion lately. And really feeling that truth of its needing to start with the self? Once I manage that, and allow a space for me to breathe, compassion for others flows naturally – and yes, learning. And I’ve noticed that having a writing ‘room’ (not literal, although maybe that too) is the biggest factor for me in being able to ‘breathe’: i.e., I think, make meaning, find resonances: the essence that matters to me, in particular (and later I’ll discover, maybe some others). Give myself that acknowledgment, rather than being swept along by other (and others’) currents – especially as a sensitive person.

I feel I’ve needed to ‘burst out’ with some of the poems I’ve written – say the things I couldn’t find a place or space to say when I was younger, or elsewhere. Maybe this makes me a ‘weirdo’! (whatever that is). Or maybe it makes us human?

ML: Yes, I saw the Dalai Lama in Cardiff years ago, and he asked people who loved themselves to raise their hands. Three or four did, out of a few hundred. He was shocked. Lots of work there. I’ve often felt so different, that nobody ‘gets’ me. I worked very hard at trying to be like other people, whatever that meant. It’s much better now I ‘get’ myself a bit more! And I think I can let other people be more of who they are, too. Some of the time. 

CG: Indeed… I’ve loved having this conversation, Maxine, thank you.

ML: I’ve loved it too.