“Well, the results aren’t what we were hoping…” my doctor said, closing the door behind her. “But the good news is this usually responds really well to treatment, and you won’t have to do chemo.”
We talked for a while longer, and then she offered up, “I mean, I’ve seen people with thyroid cancer all over their body live another 20 years.”
I think it was meant to be soothing, but I couldn’t help but feel like it wasn’t quite relevant to me. Not to mention, it contradicted her speculation just moments ago that my chance of recurrence after surgery would be very low.
Let me clarify that this is in no way a commentary on my doctor. She shepherded me through my treatment with what can only be described as enthusiasm and information. She offered me options in treatment, a referral to a fantastic surgeon, and a Kleenex if I needed it. The unwitting messenger.
But it is an exploration into the culture of healthcare and the unspoken truth that deathcare is a part of healthcare. That’s really why I’m here, telling you this.
For as much information as my doctor gave me about thyroid cancer, there was always something left out. The elephant in the room: death. Well, actually, if cancer is the elephant in the room, then death is like being hit with the scent of the elephant. We can all smell it, but no one names it. Out of politeness, I suppose. Or maybe denial, or helplessness.
No matter how “good” your prognosis is, mortality slaps you in the face, leaving an indelible mark. Or maybe it’s more accurate to say it slaps you in the heart. You can’t unsee it. Unfeel it. And as a 29-year-old cancer patient, I was in no way prepared to be a dying person.
Even with a “you’re likely to live to be an old lady” prognosis, it felt like a bubble I had been inhabiting my whole life burst. I was trying to wrap my head around the idea that I’d spent nearly three decades thinking that somehow it wouldn’t be me. It’s not an active thought, but more of a passive “othering”. Oh, that happens to other people. Now, I couldn’t reconcile why I never considered it could be me.
I was too busy being busy. Too busy working. Too busy distracting myself. Distracting myself from worrying about dying without consciously doing so. Dying is the unknown, the ultimate uncertainty. Oh boy, is cancer a crash course in getting comfy-cozy with uncertainty. Once the veil is lifted, you can’t unsee it.
I had spent many anxious years trying to avoid all things death and dying. But suddenly, I wondered why I hadn’t spent those years instead preparing for death. Not in an Eeyore kind of way, but in a practical way. Just as I followed my curiosity to learning Japanese or how to sew a dress, why should learning about death be any different?
Considering 100% of the population will die, it’s amazing how seemingly easy it is to go along in life thinking, “oh that’s for other people to do, not me.” On the upside, because everyone will die, that also means other people have had this realization before and have paved the way.
After my active treatment ended, I decided I wanted to leave behind my then-jobs of web design and professional home organizing. I wanted to become a life coach and signed up to become a Gallup Certified Strengths Coach. As I started to build my website, I figured I should probably have actual professional photos, rather than a one-off photo of me smiling over a plate of sushi. I booked a session with a local photographer and we got to chatting. I mentioned cancer, I think she brought up mortality, and I lit up. Someone who wanted to talk about real stuff! She told me that she just took a wonderful death doula training course with her now-friend Alua Arthur and that I should check it out.
A death doula! I hadn’t ever considered that. It felt ironic after recently declaring myself a life coach. And it would be another two years before I signed up for the training, but the seed was planted.
Deathcare is an enormous industry. Many people balk at the idea of calling it an industry, but that’s what it is: an ecosystem of support for dying humans, or currently healthy humans who acknowledge they too will die at some point. Many people have heard of hospice and palliative care, but far less know what they actually entail. Just a sliver of those people has likely heard of a death doula. Also known as an end-of-life midwife, death guide, or any number of other similar monikers, a death doula provides any non-medical end-of-life support.
Come to think of it, I had supported a home organizing client several years prior after her husband suddenly died. I spent my time with her helping file affidavits to American Airlines, backward-engineering his critical passwords, and otherwise supporting the family to pick the pieces up. In retrospect, that was my first death doula experience.
I couldn’t help but see where so many of those pieces could have been laid out ahead of time. It’s possible to ensure that all of those other pieces that land you in what I call “admin purgatory” are in fact handled beforehand, or lined up and ready to go. The preparation gives more time for grieving, one less burden to pile on. And, often critically, it can bring a sense of order to the ultimate unknown.
Death doulas provide all manner of services, from end-of-life planning to home funerals, from running errands for caretakers to creating a legacy project with a dying person and/or their family. Death doulas are there to be a support and help in nearly any way they can, just short of medical care. This is why a death doula is such a beautiful complement to a medical team. We don’t come in with an agenda; rather, we come ready to serve.
We are there to ensure care plans are clear to everyone involved, that the right paperwork has been given to the right people (looking at you, notarized advanced directives), that caregivers are fed and looked after themselves, and to be a point of contact amongst all of the care team. Every death doula has a different specialty and vibe, but one thing is consistent: we come in humble service. While we don’t claim to know any more about the great unknowns of dying, what we do know are ways to get prepared, questions to ask yourself and loved ones, and what you might expect when a death is near. Death doulas are slowly gaining recognition and popularity—as much popularity as anything death-related can gain.
Death doulas are not harbingers of doom and gloom, but rather an impartial third party who can encourage you to prioritize what matters to you in the life you have left, in your death, and how you would like affairs handled after your death.
In my work as a death doula, I am hoping to normalize end-of-life preparation. To invite the conversation of death back to the table so that we may learn from it, rather than run.
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