Hey! I am a composer and radio presenter- I have a progressive illness and also endometriosis and adenomyosis, which I've written a lot about. My life got horribly crushed during the Pandemic and am just starting to find my way again. I'm a very silly person and also love a laugh! I have a post coming out about my blue badge and the issues around it on Monday if you're interested. Sorry if this is more info than you were looking for 😂
Aw thanks for sharing - the pandemic crushed so many of us in so many ways. I'd love to read that post, I've only used mine a few times. I would also like to hear about what you do for your grief ceremony when you do it :)
I have been thinking about a grief cememory too, my friend said they wrote something on rice paper and gifted it to the river as a way of letting go. Or maybe they burnt a piece of paper, I'm not sure, but we did have a little chat about how to process grief. I'll have a little think and dig up that conversation. I don't think I'd be able to organise (too likely to fall asleep at random to stick to a particular time) but maybe there is a ritual that could be accessible to us all at home. For me, writing about all this has been helping me process my grief.
Okay I've thought of a way to have a 'Crip Ceremony of Grief' as Jamie Hale suggested. I was reading Katherine May's Wintering and she was writing about celebrating the summer solstice - the transition between the days getting longer to the days getting shorter feels like a really appropriate moment for me to grieve the fullness of life we no longer have access to and accept the life we have now. It's 21st June here in the northern hemisphere, but take your time or choose a different date if it doesn't resonate with you.
I was thinking of getting some rice paper and writing on it in something safe for the environment (oak gall ink?? /jk) and putting it in a river, but I've already done my tesco delivery for the week and I can't get to the river in my wheelchair even if someone takes me. A piece of paper might be more accessible. I don't really want to start a fire in my something-coated metal plant pot so I was thinking of writing something on a piece of paper in pencil and ripping it up to put into my compost bin. I like the idea of my written dreams feeding my dreams of a growing a vegetable garden.
My friend also suggested throwing a 'funeral' for their past self.
Let me know if any of those ideas resonate and if you plan to ceremonially mark your grief. Thanks to Jamie for the idea
Really, really timely piece for me as I am in a big wave of crip grief myself and published a rather fiery piece on it last week. This is what I (and my therapist) call complex grief; grief that we don't get the luxury of neatly resolving because of the different losses we continually face, even (and often) if we are already in the middle of attempting to navigate a different loss. A very, very real reality of the progressively disabled life. Not the only reality, but one all the same. Thanks for writing this. <3
Thank you so much - I’ll go and look for your piece, and I hope that you can ride this wave in a way that lets the grief be with and nourish you as well as being an unresolvable piece of pain
Thank you for writing this piece and sharing with us all so candidly. This grief is so intense and just when I feel like I've gotten a hold over it a new unexpected waves takes over. As hard as acknowledging that this grief is life long, it is also such a breath of fresh air to hear someone talking about it so honestly and remembering its not a person failure for not being able to "get over it" by now. Thank you for sharing <3
It’s something that we’re expected either to feel unremittingly or to get over straight away, rather than being able to have it as a part of us and a part of our experience
Exactly. And they somehow make you feel like a failure or a "bad disabled person" or some BS for experiencing that grief, a grief that those that judge can never begin to understand
Hi Jamie. I’m right there with you with this. I think it’s so important for us to be able to talk honestly about our grief. It’s human and the grief of a progressive illness is unique and unrelenting. I could go on, but I’m going into a session. I’m glad you wrote this. You’re not alone with it. Let’s keep the conversation going.
Thank you. It’s so hard to talk about without feeling like we’re leaning into a tragedy model, or playing into the idea that disabled lives are terrible - but actually refusing to talk because we feared leaning into something ends up shutting us down instead
I think a ceremony is a wonderful idea – I would definitely attend something like that 🌱
I posted some suggestions in my comment above!
Thank you so much- the solstice is *such* a good idea. I am going to do this. I've subscribed to you and am saying hello :))
Aw yay so glad it resonated and would love to hear about what you do. Thanks for subscribing, hello back!
Hey! I am a composer and radio presenter- I have a progressive illness and also endometriosis and adenomyosis, which I've written a lot about. My life got horribly crushed during the Pandemic and am just starting to find my way again. I'm a very silly person and also love a laugh! I have a post coming out about my blue badge and the issues around it on Monday if you're interested. Sorry if this is more info than you were looking for 😂
Aw thanks for sharing - the pandemic crushed so many of us in so many ways. I'd love to read that post, I've only used mine a few times. I would also like to hear about what you do for your grief ceremony when you do it :)
❤❤ I related a lot to the griefs you shared.
I have been thinking about a grief cememory too, my friend said they wrote something on rice paper and gifted it to the river as a way of letting go. Or maybe they burnt a piece of paper, I'm not sure, but we did have a little chat about how to process grief. I'll have a little think and dig up that conversation. I don't think I'd be able to organise (too likely to fall asleep at random to stick to a particular time) but maybe there is a ritual that could be accessible to us all at home. For me, writing about all this has been helping me process my grief.
Those sound like really lovely ritual elements
Okay I've thought of a way to have a 'Crip Ceremony of Grief' as Jamie Hale suggested. I was reading Katherine May's Wintering and she was writing about celebrating the summer solstice - the transition between the days getting longer to the days getting shorter feels like a really appropriate moment for me to grieve the fullness of life we no longer have access to and accept the life we have now. It's 21st June here in the northern hemisphere, but take your time or choose a different date if it doesn't resonate with you.
I was thinking of getting some rice paper and writing on it in something safe for the environment (oak gall ink?? /jk) and putting it in a river, but I've already done my tesco delivery for the week and I can't get to the river in my wheelchair even if someone takes me. A piece of paper might be more accessible. I don't really want to start a fire in my something-coated metal plant pot so I was thinking of writing something on a piece of paper in pencil and ripping it up to put into my compost bin. I like the idea of my written dreams feeding my dreams of a growing a vegetable garden.
My friend also suggested throwing a 'funeral' for their past self.
Let me know if any of those ideas resonate and if you plan to ceremonially mark your grief. Thanks to Jamie for the idea
Really, really timely piece for me as I am in a big wave of crip grief myself and published a rather fiery piece on it last week. This is what I (and my therapist) call complex grief; grief that we don't get the luxury of neatly resolving because of the different losses we continually face, even (and often) if we are already in the middle of attempting to navigate a different loss. A very, very real reality of the progressively disabled life. Not the only reality, but one all the same. Thanks for writing this. <3
Thank you so much - I’ll go and look for your piece, and I hope that you can ride this wave in a way that lets the grief be with and nourish you as well as being an unresolvable piece of pain
Thank you for reading it! I know what you mean about this kind of complex grief, and I’ll look for your post also
Thank you for writing this piece and sharing with us all so candidly. This grief is so intense and just when I feel like I've gotten a hold over it a new unexpected waves takes over. As hard as acknowledging that this grief is life long, it is also such a breath of fresh air to hear someone talking about it so honestly and remembering its not a person failure for not being able to "get over it" by now. Thank you for sharing <3
It’s something that we’re expected either to feel unremittingly or to get over straight away, rather than being able to have it as a part of us and a part of our experience
Exactly. And they somehow make you feel like a failure or a "bad disabled person" or some BS for experiencing that grief, a grief that those that judge can never begin to understand
Hi Jamie. I’m right there with you with this. I think it’s so important for us to be able to talk honestly about our grief. It’s human and the grief of a progressive illness is unique and unrelenting. I could go on, but I’m going into a session. I’m glad you wrote this. You’re not alone with it. Let’s keep the conversation going.
Thank you. It’s so hard to talk about without feeling like we’re leaning into a tragedy model, or playing into the idea that disabled lives are terrible - but actually refusing to talk because we feared leaning into something ends up shutting us down instead