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I get stuck




I've been writing about the warrior.

Here I'm writing about the hurt.

Maybe they're not so far apart.






I get stuck. I know I’m stuck when I notice I’ve lost the ability to reflect and the curiosity to know what’s happening. I get busy pretending to myself and everyone else that I’m strong, capable and unbeatable. See the last few weeks.

A time comes when there’s a crack in the wall, and I’ve found it today. Enough maybe, for a plant to grow, or to let the light in. Enough to write, enough to find out what’s really happening.


A bit of space has appeared where I want to write it, make it, share it.


Today I’ve watered the veg, transplanted some seedlings, pulled up some weeds, done the washing, bought a paper on a fast walk, read my book and cooked. And I’ve noticed how much the right side of my head hurts.


There’s the chink. I’ve been going for the strong warrior for weeks. I’ve been to Paris. I’ve started a possible new dementia group. I’ve braved taking round flyers about the group without letting myself know I’m scared. There’s been some difficult responses which I’ve taken in and tried to forget, or understand.

Here we are. I’m doing so very well. I have dementia, but I’m going to go down supporting others, so that it will be obvious to everyone that I’m doing so very well. I’m going to educate people about dementia and about living consciously, curiously with dementia. Heavy irony.

My head hurts. I have a migraine-type reaction to the dementia patches that make me able to do the things I do very well. I talked to ‘my’ neurologist yesterday. In the matter-of-fact pragmatic way I appreciate so much, he talked me through what might happen next and how we can deal with it. I felt seen and held and supported, and I’ve stopped pretending for a while.


My uncle was my dentist when I was at school. He said he had a brave girls book, and my name would go in it if I coped with whatever he was going to do to my teeth. Without any fuss. I wanted to be in that book, so I coped. And I didn’t wonder why I never saw the book, why he never showed me my name in it. For years as an adult I dreaded every check-up, avoided them if I could, until I learned to tell a dentist I was scared. I needed to know what was happening, as it happened, and then I could be more than coping. And the dentist did just as I asked, and it was okay.

Today I know I’m scared and hurting. I’m staying slow, and here I am, writing. Knowing some people might judge what I’m saying, or try saying something to cheer me up. But I need to say it hurts, and it’s scary, and I need others to know, if they can. It’s scary in here, with dementia. And I know this might not be what some people might want to hear, and that’s okay. I don’t have to be in the brave girls book, or the brave old demented womens’ book.


Then with any luck I’ll be able to pick up what’s left and go on. I’ll be unstuck, vulnerable, and I’ll do it all anyway.


Written 10.6.23.



150 views16 comments

16 Yorum


Misafir
03 Tem 2023

Thank you, Maxine, for saying it how it is, for you. And yes, it is scary.

So glad that it sounds like you have a really good neurologist (as in , good at communicating) to talk things through with & think about the future and how to handle it.

Such a postcode lottery - keep on keeping on, Maxine.

From your demented friend, Julie

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Misafir
14 Haz 2023

This is a brilliant blog

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Maxine Linnell
Maxine Linnell
15 Haz 2023
Şu kişiye cevap veriliyor:

Thank you - I'm always nervous about posting something, but I'm glad it's working for you.

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Ellen Stewart
Ellen Stewart
13 Haz 2023

So much love to you Maxine. Feeling the fear & still facing it is the definition of bravery. Full of admiration but also feeling your hurt. Thank you for writing xxxx

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Nell Nelson
Nell Nelson
13 Haz 2023

Thank you for writing this. I love it.

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Maxine Linnell
Maxine Linnell
15 Haz 2023
Şu kişiye cevap veriliyor:

Thanks Nell.

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Misafir
13 Haz 2023

Such beautifully written honesty. I love you for sitting with your fears and uncertainty. Big hug. Sue xx

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Maxine Linnell
Maxine Linnell
15 Haz 2023
Şu kişiye cevap veriliyor:

Thank you - the fears seem to lessen in power when they're attended to. And then they go into the background again and there's room for what's here...that's how it feels, anyway. I'm not sure which Sue you are!

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