35 Comments

Thank you, Emily, for holding these conversations with Madelleine. The part that particularly resonated with me was how many, many people - well-meaning or otherwise - try to compare anything they’re going through or have gone through to the very unique experience of living a fraction of your former life and living it largely in isolation. Very few people can really understand what this does to a person. Thank you for putting that out there.

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I’m so glad that part resonated 🌸❤️

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Yes I agree, it’s very, very difficult to conceive of this, and I think also, terrifying for people to consider — comparing it to something else might make it feel safer and more manageable (which sadly then invalidates the experience for us)

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I’m struck by Madelleine’s persistence in her creative practice. There’s a courage in her commitment to keep going even if it takes longer, more effort and pain. I’m not trying to silver lining ME, just acknowledging her work to maintain this part of herself despite the challenges.

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Thank you for seeing that, it means a lot 🌸❤️

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Completely, Madelleine is *deeply* courageous and tenacious. Our conversation really made me think about how important it is to keep hold of these creative/ spiritual parts of ourselves — with ME it can be so tempting to cut them out and spend energy on the more functional aspects of living.

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thank you both for this, wish I had the energy/brain capacity to comment more, but it's a shitty PEM day

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Thank you for your kind words, I'm sorry it's a shitty PEM day, sending you love xx

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Shitty PEM days are sooo shitty! Hoping for better days 💕🥰

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In emoji form, I feel shitty PEM days = 🫠💩😖

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What generosity from you both. Emily, for holding space for this conversation with such care and bringing into it your lived experience, and Madelleine, sharing her world and lived experience with such invitation and openness as the very act exhausts. I found reading this deeply moving, while also offering me a window into my own experiences with chronic health issues with more tenderness and perspective.

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Thanks so much, Anna-Marie, your kind words mean a lot. I'm glad it resonated and gave different perspectives on your experience too. What we all hope for with our writing/ creative work!

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Thank you so much 🌸 I’m so glad it resonated and gave you new perspectives — that gives me so much purpose and meaning.

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I'm still working through the interview (it's hitting hard) but if you are able, please tell Madelleine that I am grieving her situation with her. Thank her for sharing this, and tell her I won't forget her story.

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Thanks Mia, so glad you're reading it slowly and taking care of yourself. I will let Madelleine know xxx

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Thank you so much, Mia 🌸❤️

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Madelleine I love your questions to yourself about grief, that was a real wow moment for me!

I think being heard, or listening and making people feel heard, is a skill so many people don’t have. I’m trying constantly to change my vocabulary to make sure people feel seen and heard, but I feel like I have work.

Wow you’re in a crazy situation! I don’t know how it sits with you being told you’re so good at adapting, but you are. Honestly I’m in awe of your self awareness, the knowledge of your limits and your problem solving as your life dramatically changed.

Emily some cracking questions here. I feel like you’ve really brought out some very interesting aspects of grief. Thank you to you both 💚

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Thanks for your lovely feedback, Sheila, I echo everything you say about Madelleines wisdom 💕 I love the sound of your enquiry into how you can better listen, how beautiful.

Since training as a coach, I have realised how much of deep listening is, of course, saying less and being more curious about the person’s experience (rather than whatever I’m most interested in talking about). So for me, it’s less about the words I say, but when I don’t talk. And when I do, how I stay curious to another person’s world.

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I agree! I know I feel most heard when people, in the right moment, are respectfully curious. I do sometimes find curiosity can feel intrusive or personal or ill timed, but on the whole it’s nice to have people interested.

I think your sentence in this interview before the question was impactful for me, you’d heard, summarised what Madelleine had shard and empathised in a short phrase. Curiosity is great, but the being heard is something else. If it’s shown the person is listening before they ask the next question, it’s another level.

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Oh yes I see what you mean, sometimes it is super helpful to play back what the other person said!

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It is and you’re doing it well, I would like to learn to do what you’ve done.

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I can recommend training as a coach!

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Ooo I’ll add it to my list if potential next jobs (as I am wanting a career change).

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Thank you so much, Sheila! And thank you for being a witness 🌸❤️

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Sending lots of love 💕💕💕

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This was amazing! Very insightful and powerful - Madelleine you rock 💖💜💗

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Thanks lovely, your opinion means a lot to me! Madelleine does indeed rock 🤘🏻

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Aawe you’re so sweet! Thank you ❤️🌸

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I came across this artist whose work touches on her experience of disability and it connected to this conversation for me https://open.substack.com/pub/thejealouscurator/p/art-delivery-021724?r=1yd5l&utm_medium=ios&utm_campaign=post

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Thanks for sharing, Katie, love this!

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So grateful to you both for putting words around this and sharing. So much that I didn't know and had never imagined - I'm blown away by your tenacity, resilience and deep, deep, hard earned wisdom Madelline, look forward to hearing the album ❤️

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Thank you so much for your kind words 🌸

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Thanks so much for your lovely feedback, Laura. I heartily agree with you about Madelleine's qualities, they shine through the conversation xx

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