#6: Quarterly, March '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.

The generative chaos of the GriefSick creation phase last summer (see video below). Art supplies, book and zine inspo, herbal tea allies, candles and just out of shot, a bar of chocolate

Noticing / learning / questioning

• The next time I launch a content brand, I will create three months’ of content ready to deploy so there isn’t a massive gap post-launch. You live and learn

• I haven’t been making space for my own GriefSick writing. I have enough material for several books and it all feels so deep, complex and interconnected, that when I try to write a short essay, it feels impossible to write about one thing without writing about all the other things. Okay, and I have deep-seated writing neuroses that I should probably take to a professional of some kind

• If I’m being charitable towards myself, while I haven’t been writing the kind of essays I imagined for this publication, I have been doing stuff (see below). Mainly, I’ve been building GriefSick’s scaffolding or infrastructure: a trauma-informed collaboration process, building relationships with collaborators and training in grief training

• I thought publishing interviews would be easy (naive). They require a lot of work, with about 15-steps in the process from initial conversation through to publication (see more here)

• I need to be cogniscent of vicarious trauma from working with other people’s stories. The way I’ve been coping with this is to titrate it, working on the interviews in short bursts over many weeks, to give my nervous system breaks

• Having completed three interviews now, I’m struck by how often interviewees say some variation of: “It’s hard to describe, I don’t have the words for this”. There are some really specific, unique chronic illness griefs that we’re teasing out in those conversations, griefs that I’ve never seen expressed anywhere before. It’s unfamiliar terrain; we don’t have the language for it. My hope is that, one day, someone will fund good quality research into chronic illness grief and a taxonomy and shared language will start to emerge. If you’re a funder reading this, please know there are talented researchers ready to do this work

• I’m glad I included the audio in Madelleine’s interview. I didn’t intend to because I don’t have the capacity or ability to edit audio and I thought it would be too rough to include the whole thing. Okay, and I felt self-conscious. You, the listener, will hear my fumbling questions! I will lose the mirage of precision and fluency that writing creates! I dislike my voice! But then I remembered that longform writing isn’t inclusive for a lot of people with ME (and many people with divergent brains). With interviewee consent, I plan to include the audio, or at least parts of it, in every interview post.

• The audio version and written version of Madelleine’s interview are tonally different. The written version is flatter, mostly in the register of “melancholy”. Whereas in the audio, although Madelleine and I are saying the same words as in the written version, there’s many more tonal shades: black comedy, self-deprecation, lightness, charm. Madelleine has a wonderfully dry sense of humour and I’m regretful that this isn’t conveyed in a transcript-style interview. Perhaps the solution is to craft “profile”-style interviews, where the interviewer gives context and colour to the conversation. Typically, though, this style is more aimed at creating a sense of who this person is, rather than delving deep into a particular topic, as GriefSick aims to do. A form to experiment with?

• Noticing this tonal difference between written and audio gives me fresh energy to think about a GriefSick podcast. I have a clear concept in mind, but I’d want a co-host, who, like me, would probably have to do it for free, and a producer, who would need to be paid. Please get in touch if you’re interested in co-hosting and/ or know how to get podcasts funded!

• I find that being interviewed (see below) helps me articulate my thoughts and I’d love to do more of it

• I had five people working on writing guest posts for GriefSick, but they haven’t (yet) worked out. I think this is the inevitable result of people who are fitting writing around busy lives and/or chronic illness flares, plus the casual nature of GriefSick. I’m honouring these existing agreements, but I’m removing the guest post option for future collaborators, as it doesn’t seem to be a wise place to focus my energies.

• Three content “strands” for GriefSick have now cohered: interviews, updates (like this one) and my own essays. This feels enough for now.

• GriefSick has a grand total of three posts on Instragram now, mostly led by Fran and Laura. I’ve surrendered to the fact that I can’t make GriefSick into anything on social media until I find a way to either fund my time to do it, or pay a social media manager for maybe half a day per week. It’s a shame; I believe this is important, transformational work, and I want people to find it.

Doing

• Publishing one interview (with

  Madelleine Müller
  ) and editing two more

• “Chronically ill people live in the territory of erosion” — a podcast interview about psychedelics, collective grief and surrender with the lovely Daniel Moore of Post Exertional Mayonnaise

• The brilliant

  Rachel Katz
  interviewed me (and other chronically ill folk) for an article in Vox about navigating chronic illness. I talked about grief, rage, community and witnessing in chronic illness — all of the reasons I started GriefSick. It’s an empathetic piece, with a lot of wisdom shared, bound together by Rachel’s beautiful writing

• I realised last November that I’m now the editor of a publication that deals with challenging topics (illness, grief) and that I have a responsibility to myself, to GriefSick and to others to design a collaboration process that’s trauma-informed. To that end, I wrote some guidelines for collaborating with GriefSick

• Fran made this gorgeous short video about the intuitive, emergent process of making GriefSick. I get emotional every time I see it; what a nourishing, creative summer that was

• I wrote about a few grief and illness related things in my personal newsletter,

  This Might Resonate

• I finished my Entering the Healing Ground: Grief Ritual Leadership Training with Francis Weller and I’m slowly reviewing and consolidating my learnings from it and the Grief Tending in Community course with Apprenticing to Grief from October 2023. Honestly, I think I will be integrating these rich, deep trainings for years

• I’m starting to practice grief tending, with some facilitation collaborations coming up. I’m weaving grief work into my coaching, for example, I’ve been coaching two employees of an organisation that’s closing down and including grief-inspired elements to support this transition

• I’m also weaving chronic illness into my organisational design practice: witness this talk about what we can learn from chronic illness-informed organising at the School of System Change’s Constellating Change series, Session 2: Structures and Rhythms last November. Read the transcript here. Tldr: Take inspiration from seasons and cycles and adopt “continuous handover” communication, underpinned by trust and radical acceptance.

  I think that chronic illness informed organizing could be regenerative organising, and I believe it could be the kind of organising that we need for a life sustaining society and a life sustaining planet.

Reading

• Moving Mountains by Louise Kenward. I devoured this anthology of chronically ill and disabled nature writing. It is rare to see my own relationship with the more-than-human world so thoughtfully represented

• Making kin with disability by

  Sophie Strand
  : “As we seek to imagine ways to become ecologically embodied and environmentally aware, let us not forget to ask the bodies that know best what it is to be an ecosystem. The disabled and sick bodies that know best what it may feel like to be a polluted river, a clear-cut forest, a pesticide-addled population of honeybees”

• Healing Justice Lineages by Cara Page and Erica Woodland. A critical read that places care back in the collective (a counter to the commodification of self-care), sharing the healing lineages of Black, Indigenous, People of Color, and Queer and Trans people in the US

• A Flat Place by Noreen Masud. Moving back and forth between Lahore and the UK’s flat places, an exploration of complex post-traumatic stress disorder, this is the saddest, most desolate memoir I have ever read, and one of the most beautiful

• Part 1 and Part 2 of

  Jane Ratcliffe
  ’s interview with the incredible
  Andrea Gibson
  , who is undergoing cancer treatment

• This gorgeous interview with Tracey Emin: “This work is a pouring out of my soul. Since I was ill, that’s become more and more important to me because we all have a time limit”

• Cooking in crip time by

  Hannah Turner
  in
  Vittles
  : “Crip time is broken time is grief time is sick time”

• Care is where the body lives by

  Raechel Anne Jolie
  : “Where is the body? It is wherever the chaos is”

• My Unraveling: “This is what disability advocates have said all along, not that it usually sinks in: The able and the disabled aren’t two different kinds of people but the same people at different times”

• A beautifully illustrated piece on Long Covid

• The Five Invitations: Discovering What Death Can Teach Us About Living Fully. A beautiful meditation from a Zen Buddhist hospice co-founder on how holding death close brings us greater aliveness

• Bayo Akomolafe on grief: “Since grief makes tender boundaries, might grieving help facilitate perceptual shifts that allow us to notice the world differently? Might a structured hesitation to jump into solution-ing, and a desire to stay with the troubling effectuate new capacities for engaging our most haunting crises?”

• Grief is meant to re-arrange us by

  Naila Francis
  “… grief is meant to re-arrange us. We cannot be touched by the harrowing hands of loss and remain who we are. We are called to inhabit new forms, new layers and to let others go. To relax our grip on control and trust what wants our attention in the unmooring. There is nothing stagnant about the energy of grief. Its feral nature, insistent clamor and chaotic movements are invitations to transform”.

Coming up

• Two more interviews, published in March and April

• Ideally, a piece of my own writing. As for when, I make no promises.

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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.

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