Me and my friend and collaborator Eliana Yoneda joke in zooms that everything is deathwork. We bring most things in our lives back to deathwork, without effort really, it almost seems farcical its so easy. My personal deathwork is filled with the daily work of how to be when I die, how to do the things I would like to do before I die, how to heal and love before I die. Then there is the deathwork I do for others, which often overlaps with my personal deathwork (hint: that’s one of the reasons I do it). But also the deathwork I do for others has been something I couldn’t have imagined before I actually started doing it. I write here to memorialize some of what I have been sitting with in doing the work in the past year. I write here to share it with you.
Deathwork as Imagination
A big part of my work for the clients that are the caretakers/family/loved ones of the dying, is to be a steady source of imagination for them. Often times, caretaking in this country is thankless, unpaid, and unseen work, caretakers of the dying are overwhelmed, overworked, and often femme people who are caretaking for other people (besides the dying) in their lives. Also I don’t mean to misstate: I’ve done enough caregiving, to know the act of caregiving is of many calibers more complex and fulfilling than a lot of other types of work one could do. Caregiving, when it’s supported, seen, valued, and acknowledged, can be some of the most purposeful moments of a person’s life. A deathworker can do so much good by providing this support.
And often times imagination requires spaciousness. And the kind of time and effort required in end-of-life care can sap a human of their innate ability and desire to freely imagine.
What caretaking can actually mean varies. I have seen loved ones truly be interested in not just caring for the health of the dying person’s body and disease management, but in also trying to support the end-of-life wishes of their loved ones. But in order to do this, the caretaker may have years (a lifetime even) of relational and emotional history with a dying person that may make even hearing the words of the dying person a challenge. We can help in this.
Another challenge to giving the dying their last wishes is our own lived experiences. Depending on how our own lives have gone and what we have been given access to according to our lived experiences, gender, immigration status, race, disability status, economic realities, etc… we may not be able to imagine the solutions required to give our loved ones the things they ask for. Even if those things to others, are seemingly simple and completely possible. Systemic harms over a lifetime can limit our imaginations, but that can be undone.
This is where the role of the deathworker can be so beautiful. We can help our clients imagine those solutions when often our clients are overwhelmed with grief and logistical day-to-day management of keeping their own lives afloat while managing the tasks of the dying. These solutions we help to imagine for our clients can create ripple effects beyond just their effect on the dying person. They can also affect the caretaker’s own ability to imagine a different future for themselves.1 This is some of the magic of deathwork.
Helping our clients imagine futures for the dying2 has surprised me in how beautiful and creative it is. It fulfills because in order to truly be available to do that work, I myself have to have as open an imagination as possible. I must be as unblocked as I can be. I don’t imagine well from a place of fear, comparison, or seeing myself as anything other than supremely possible and whole. So in this way I must constantly do the work of healing myself.
Birthdays as Deathwork
I recently celebrated a birthday. I oscillate on my birthdays, between decadently doing exactly what I want (often absolutely nothing but lounging around with 0-2 people I can easily go to whatever last-minute spot that tickles my fancy OR actually attempting to gather around loved ones even though the days and moments leading up to it can bring my often introvert heart deep anxiety. I chose the latter this year and am so glad I did.
I want to share the hilarity of my birthday planning anxiety with some conversation.
Me to C: “I am experiencing some level of anxiety about the picnic later today.”
C to me: “I want to just note how odd-sounding that actual sentence sounds to me. You are having anxiety about a picnic.”
I chose what I thought would be the chillest way to gather, but of course there’s always some level of planning involved when you are gathering people to a location drop on a google map in a park, and kids, dogs, food, blankets and drinks must be brought in.
But it was oh so lovely and worth it. That’s why I do it. And the fact of gathering people I have learned is an actual act of my personal deathwork. Birthdays can be something of a living funeral or ritual to celebrate ourselves with our people while we are alive. They can be spaces where we hear the lovely things people have to say to us while we are living. They can be reminders of who we are when it’s sometimes hard to remember what we are even doing every day. It took me a while, but I’m glad I finally got to this realization of why birthdays have always mattered to me. It also matters that we show up to remind others of their importance to us. While they are with us.
Good relationships are work, make sure that work is Deathwork.
We all know relationships are work right? Even, perhaps especially the good ones? But recently I’ve been thinking if the terrible relationships are work, and the good ones are work, then how do we know if the work is worthwhile? How do we make sure the relationship is not toxic? My personal measuring stick is this one: If the work of my relationships aligns with my personal deathwork, then it is worthwhile.
Yeah, the work won’t always be good and worthwhile, I’m definitely not advocating dropping your boo when you have one fight over how you hand wash dishes differently because the conversation doesn’t feel deep enough. Just saying overall the personal/emotional/spiritual relationship work you engage in most of the time should perhaps be leading you to who you want to be when you die. And relationships, really are about that spiritual/emotional work sometimes, Whew… what a mirror to see ourselves through!
Deathwork is not Deathstagram
It’s probably just my Instagram, but when I log in: everyone is a deathstagrammer, death doulas are the hot new thing people want to talk about, and memes about deathwork abound.
I try to have very little judgment when it comes to social media because I do see real connections between humans forming, and actual conversations about death can happen through things like memes or “silly content” that we might easily disregard. Also funny content is fucking funny, not everything has to be serious or “purposeful”. We can just laugh because it feels good.
I started doing this work in its current form in 2019. The work looks a lot different than social media makes it out to be, which I think most death workers know but sometimes I wonder about everyone else. Death influencer content is different than being on 3-way with a palliative care doctor and your client so that your client feels a bit more empowered and can understand what is happening with their loved one, instead of perpetually confused by the unending medical jargon jammed in 15 minute slots that you have to beg for3.
I don’t think I’ve found a way to express on Instagram what it was like to help dress a dead person’s body when I was working with their family earlier this year. I haven’t yet expressed it because I’m not sure it even belongs there. It felt sacred, like a holy quiet bond between people in the same space at the same time. Something that could never quite happen again in the same way. Lately certain moments happen in my life that are so wildly beyond my preconceived expectations for my life, that I just need to sit with them for some time.
I now know from sitting with it, that it was a sacred and deep honor to be of service in this way, and in showing up, I confirmed a deep truth about my spirit and nature. I am in fact a deathworker.
Social media allows me to try on expressing the truest parts of myself without fear and often I’m met with love. However I have to constantly be aware of not losing myself in other peoples’ visions and disentangle that pesky personal validation - “like” button combo. I fail often. I don’t create for the algorithms however I’m open to the possibility that I’m affected by them and I’m not 31 years old4. So it’s always wild when people find me. I’m still often thrilled. I love that I can still often have real interactions with other humans I know on my social media feed. It’s small enough that I recognize people and my DM’s are not a hot mess. I can see you basically.
In my short years of being a deathworker, and my longer years of existing in my 45 glorious wondrous years on this planet and in my body, I know less than I knew in my youth and yet the following things feel true to me now :
Social media may be able to express many things, but it often cannot fully express the mysterious, imaginative, caregiving, spiritual work that deathwork is. That is also ok.
Deathwork must be done to know it.
All of your personal life experience can be brought to this work, because there is no one way to do it.
The work is truly in service of others. It may at times serve us, but it is not about us.
Art can exist in all of it, if we can imagine it.
Separately I believe our collective liberation comes from us all imagining loudly for others to witness and see hope. I know I been saved personally by other peoples’ wild and free imaginations myself.
who are still very much alive
I know these are systemic issues in American healthcare, but that doesn’t mean we deserve anything less than our full beautiful humanity in our deaths and in our lives.
In my completely bullshit research the average age of everyone on Instagram. I love your age and mine, this is more a comment about the algorithm.