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I dealt with most of the shock and grief, at the beginning, by being angry. As time passed, and I realised I wasn't going back to my old life any time soon, I also realised that I couldn't just be Angry All The Time , and that I missed the range of emotions I used to feel just as much as the things I used to do, and places I used to go.

It's been such a long road gradually moving from one set of emotions - well, one emotion, really - to another, and a lot of that anger came back to me with the pandemic. I was told that I was one of the acceptable casualties, who could be lost without society noticing. This was a different anger, though, a motivating one instead of a stagnating one. I met (online, mostly) so many people who knew exactly how I felt, and the anger became healing and restorative.

I still grieve my old job (even after 27 years), the loss of friends who got fed up of the effort required in order to spend time with me, and I *really* miss spontaneity! Going out of the flat now requires planning with near-military precision. But I can also see now the experiences and knowledge which would never have been part of my life if I had not collapsed on Thursday, September 13, 1997. I think the fact that I still remember the date everything changed may be a hint to myself that, even though I've come a long way, I still have a way to go...

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That’s such a good point about holding in one emotional state and I think there is occasional external expectation we stay in a particular state about our illness.

It really is an on going process xxx

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Oh, definitely. It takes a while to learn how to deal with this!

Do you follow Lucy Webster? She published a great post today about holding out for the kind of friendships you *need*, not just being grateful for any friends you get, no matter how ableist they prove to be xxx

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I do! Love her work, I’ll go read it x

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My claim to fame is that she interviewed me for the Guardian, about how disabled people, at higher risk from Covid, were facing the end of lockdown.

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Oh wow! That’s so cool…link?

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Sep 21Liked by Emma Stubbs

Wow, where to begin? As usual, Emma is profound, specifically herself and at the same time touches on some universal truths about mourning the loss of self in chronic illness. She is our chronicler , our troubadour of this aspect of the human condition that is rarely discussed. If she is a new Emma, maybe we with chronic illness are almost a new sort of human. Anyhow …. Get this woman a TED talk. (I’m serious!)

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Hahaha! Thank you 😘

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Oh Dear Emma - you are so good at writing this all down properly in a grown (groan..) up way it put all my teeny screaming obscenities to shame...But the pain of it all comes tearing off the page/screen whatever. Death of identity - slipping from being a competant (ish) interesting (ish)...little by little ..

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Ha, thank you as always Nick xx I don’t you’ll stop being interesting! 😘

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I have a chronic illness, which became worse recently. I had conveniently ignored the reality of my condition and pretended I could manage. I was actually practising pretending to myself, and I think I'd done a pretty good job of doing that. But at the same time that I experienced a flare of my condition, I also encountered my unacknowledged grief about a failed project...a dream I had that I was sure would turn out differently than it has, and that I needed to face the reality of the situation and stop pretending it was all going to work out. Unexpectedly, that was a huge relief, and I was able to drop the project and reconnect to my playful, experimental nature - presumably because I had nothing more to lose...

I feel the grief over giving up on my dream allowed me to grieve the loss of my health, my identity and my father's death three years ago. I've cried, but I haven't grieved. Now that there's a very large ball of grief bundled up together, I can finally meet it and hold it.

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It’s fascinating how illness forces us to tackle ourselves, our identity and external factors. Meeting grief seems to be the beginning of accepting the fact that our worlds have changed, don’t you think? Such a strangely relieving time xx love to you

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Sep 27Liked by Emma Stubbs

My experience has been different. I don't feel like a different person. I am still Eric; in my mind I haven't changed. I grieve the loss of certain things, like my ability to speak loudly and clearly, But I am still able to do so much. I am still working, and traveling, and living my life as well as I can. God is still on His throne, and He still loves me. And if His plan was for me to have Parkinson's disease, then I can accept that and do my best to live out His plan and purpose for me.

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