#7: Quarterly, May '24
A quarterly note on how GriefSick is going
I’m Emily, she/her, chronically ill (primarily with ME/CFS), chronic illness advocate,
grief-tender, regenerative organisational designer, coach and writer. Read about my journey in this interview, and about GriefSick in Edition #1.
I write a quarterly note about how GriefSick is going. You can read the last one here.
Noticing / learning / questioning
I moved cities mid-March and had a bad virus mid-April which I’m still recovering from. I’m also working on several other side projects that have summer launches. Consequently, GriefSick has been on the backburner for the past few months
I mean, I have done stuff (see below). I guess what I mean by “backburner” is that I’ve been enquiring into grief much more widely than chronic illness over the past few months. I’m currently very interested in the role grief work plays in culture, inspired by my grief tending teacher Sophy Banks’ powerful Healthy Human Culture work, where grief tending is a “return path” for cultures that are out of balance. In what ways is grief medicine? How are grief and liberation bound together?
I have so much lived experience and knowledge about chronic illness, and I’m less conversant with grief. I think that’s why I’m feeling called to think widely and deeply about it. A craftsperson must know their material inside out. I am getting to know grief as a material, and myself as facilitator or vessel for working with grief, working at this time of systemic collapse
I’ve been facilitating for 15 years but I’ve never focused on it as a skill. I’ve learned completely by doing, absorbing methods and ways of being from the talented people I’ve worked alongside. I hadn’t so much as read a book about facilitation until this year. But it’s what I love to do, the part of my skillset that feels most like home, something I realised during my grief tending training last October (grief tending is a facilitation practice, among other things). I’m stepping into the next phase of my facilitation work, feeling more confident to bring more of myself, with trauma-informed practice, somatic, seasonal and ritual elements, and exploring learning edges, like conflict transformation and leading groups in song
I feel self-recrimination about not doing my own GriefSick writing. I am paralysed by the “taste gap”: “your taste is good enough that you can tell that what you’re making is kind of a disappointment to you”. I have a
self-aggrandasingsublime vision of what my GriefSick writing could be and I will only disappoint myself when I actually sit down to type. Apparently, I’d rather not write at all. How can I get out of my own way? Any advice or recommendations for writing coaches/ programmes gratefully received (I rather like the look of Foster).
Doing
Publishing a interview: “A womb is not just for creating children”. Covering endometriosis, chronic pain, medical racism and grief. We talked about some seldom articulated chronic illness griefs: how lifestyle change creates loss, particularly around friendships. And the grief of losing pain, or losing symptoms, as counter-intuitive as that may sound. I’m grateful to Jodie for tenderly sharing her story with GriefSick. I appreciated her perspective on her body and her womb as someone who has endometriosis and doesn’t want children (a rarely shared view)
Publishing an interview: “Take up that space”. I’m so inspired by Fyn’s courage and vulnerability in asking their friends to create a ritual for them, and in allowing themselves to be cared for in such a deep way. I can’t help but wonder what might shift for me if I tried something similar, and how different our relationships would be if we normalised this kind of collective witnessing. Fyn and I also talked about: the importance of community in expressing chronic illness grief; the relationship between grief and isolation in chronic illness; how hard it is to ask for and receive care as a chronically ill person; the role that queerness plays in enabling communities of deep care
Interviewing another person for GriefSick chronicles
Since my shoutout in the previous Quarterly about starting a GriefSick podcast, an amazing producer got in touch with me and we’re exploring a collaboration. The concept has become much clearer to me, and I have a rad list of potential guests, exciting! As always, we’re proceeding slowly and loopingly in crip time
Chats about grief with some amazing folks: Gwyneth Jones, Felicia Macdonald, Rosie Kalashyan, Katarzyna Borowczak and attending grief tending practitioner meetups
I’m continuing to weave grief work into my coaching. I’ve just started coaching five employees of an organisation that’s closing down and including grief-inspired elements to support this transition. From next week, I’ll be supporting the staff of an organisation that is grappling with what “eldership” means, which I suspect will have endings/ grief work woven through it
Going to grief circles for Palestine and joining Exeter’s Palestine Solidarity Campaign, which holds regular grief vigils. I haven’t made it to any yet, as they’re all in person, and that’s tricky with my energy issues. This beautiful recent video of a Palestinian hymn sung outside a library in Oxford that I know well brings my grief for Palestine right to the surface. I hope I can join an in-person vigil in Exeter soon. Our grief and our liberation is all connected.
Reading
THE GRIEF WE DON'T OFTEN TALK ABOUT by
. “How do we even begin to grieve for lost dreams?”For People With Chronic Illness, Grief Is a Frequent Companion (this is paywalled, I’m including it because it’s so unusual to see chronic illness grief covered at all, let alone by a mainstream publication)
The Geography Of Sorrow: Francis Weller On Navigating Our Losses. I was lucky enough to train in grief tending with Francis and his brilliant team last year. This is a beautiful introduction to his work
Somehow the loss keeps happening: An exploration of time, felt as a pulse, rather than a period by
A keening ceremony: Finding the doorway into a shared experience of grief and love by
‘Despite appearances, I finally realise I am not able-bodied’: novelist Daisy Lafarge on her hypermobility disorder. “… Breaking the cycle of chronic self-doubt dislodges a backlog of grief: not only for the years in which I had less pain and more mobility, but also for the able-bodied future that I believed would be mine. I grieve my diagnosis, at the same time as feeling relieved by it”. Great to see a piece on Ehlers Danlos Syndrome in a mainstream publication
“Don’t let illness define you,” they say. But this could be problematic by
. Being told by abled people not to let my illness define me is one of the more rage-inducing experiences of chronic illness (when you have to track and think about your energy + 15 other symptoms every 20 minutes or so for the past eight years and most likely forever… believe me, you don’t have much choice). This sticker is a treasured possession of mine!Journal of an Ordinary Grief by Palestinian poet, Mahmoud Darwish, published in 1973 (but could have been written yesterday). More than anything else, his work is helping me to appreciate the deep intertwining of land and the Palestininan people, and the grief at that severed connection due to Israeli occupation
A World Without Palestinians: “Our collective grief is a portal through which all our people are violently pushed into a future, not only of displacement and unbelonging, but a future where we alone resist our full eradication”
Coming up
Apprenticing to grief
I will be support-facilitating at the Apprenticing to grief journey in Norfolk in July. I participated in the journey myself in October last year, it’s a special experience: “An immersive journey for people wanting to deepen their relationship with grief, and strengthen their capacity to hold grief spaces for others. We explore common stages on the journey of grief, different views of grief, and traditions about how to welcome it; exploring facilitation, questions of safety and ethics in holding grief spaces, and the relationship between grief, trauma and the wider systems of harm and times of disruption we are living in and impacted by.”
There’s a few spaces places left. If you feel curious about or called to grief work in any way, do take a look.
Fill in this short form if you’d like to be interviewed for GriefSick or collaborate in another way.
Email me at emily@emrosebaz.com if you’d like to commission me to write for your publication, speak at your event, invite me on your podcast or send me some feedback.
I suspect that GriefSick is not for everyone, all of the time. There have been points in the past eight years of my illness where I could not have engaged with this newsletter. Maybe that’s where you are now, and if so, I encourage you to protect yourself by not subscribing.
GriefSick is free. But if you enjoyed this post, please consider contributing to the Ko-Fi. 100% of KoFi payments go towards compensating GriefSick guest writers and illustrators.
Thank you for this work. I am enjoying learning about all of this and am tapping into my own very real and sometimes entirely overwhelming grief. ME/CFS. Re: the gap between the sublime vision and your capacity, and also, maybe a sense of not being on top of it (re: having things lined up to be posted as writing has fallen behind): what came to mind for me is that maybe this baby grows outside of you. Like, maybe this calls for the imperfect to be birthed and that the excellence grows out of that. The good thing about rough edges, too, is they can invite a kind of mutual openness with the person reading and the person having written. Just what occurred to me from over here
Thank you for this. Not only am I still in the thicket of grief from my husband passing away at the beginning of Coved, but it occurs to me that I have a ritual structure that helps me deal with chronic grief over a life not lived. In AA we meet with others who have chronic alcoholism and most likely other mental illness diagnosises. Fundamentally we support each other in our life long grief at dealing with such a debilitating illness. If you are interested in talking, I am game. Next month I will have 23 years without drinking. Still can't believe it.