But what counted was how you behaved while death let you live, and how you met death when life released you.
— Edith Pearlman
It’s hard to imagine anything more personal than our relationship to death, yet few of us give it more than a passing thought. I’ve mourned those I’ve lost, but until recently I’d scarcely considered what death itself means to me, how I wish to approach mine, or what legacy I’d like to leave.
I was eighteen years old when my father died. Everything was handled by my mother and other family members. I remember his cremation service, the coffin retreating behind the velour curtain, but my contribution was limited to choosing a few words to go on the order of service. (“How sad the song.”) My mother died in 2018 at the age of ninety-eight. I played no part in the funeral arrangements, the sale of her house, or the execution of her will despite being a named executor and beneficiary. I was content, relieved even, to leave it to others. It means, though, that I’ve reached my sixties with little experience of what it means to die, or how to handle the practical side of a loved one’s death.
I’m in decent health, physically and mentally. I don’t feel my end is approaching any time soon but it’s increasingly difficult to ignore the fact that my years, months, and days are not unnumbered. Fran is the same age as me. She has an advance directive (living will) and has given thought to what final arrangements she’d want for herself. The closest I’ve come to end of life planning is helping her navigate the legal side of trusts, wills, and powers of attorney on behalf of her parents, both of whom are still alive. It’s been fascinating, eye-opening — and overwhelming. I don’t have a will, an advance directive, or anything approaching an end of life plan. I’ve no idea what I want to happen to “all my stuff” once I’m no longer around to deal with it. I know I should make arrangements but there’s always seemed too much to think about, plan, and decide.
Death Education
All this changed a month or so ago during a call with Fran. She’d attended a Die Well event run by Leona Oceania of Die Well Death Education (DWDE). Fran was incredibly impressed by Leona’s knowledge and approach to the subject. As is clear from her bio, Leona is a passionate advocate for end of life education. She’s a certified home funeral guide, a death educator, an end of life doula, a hospice volunteer, and a member of the National End-of-Life Doula Alliance (NEDA).
As Fran and I talked, I realised how important a topic it is, not just generally but to me personally. I told Fran I wanted to explore it in a blog post, or even a series of posts. I’d thought of doing this in the past, but I’d always felt too overwhelmed to know where to start. I suddenly saw a way forward. If I felt overwhelmed and unsure, surely others did too. It was the perfect place to begin this journey. I didn’t have to figure it all out first. That realisation led me to write this piece you’re reading. Consider it an introduction or jumping off point. If you’ve thought about end of life planning but didn’t know where to start, this is for you.
There’s a great deal of information on the DWDE website, which I highly recommend checking out. Some topics and suggestions were familiar to me, others completely new. The content is intended for an American audience but the principles apply no matter where you live (and die). I need to work through it all, but one subject in particular caught my interest, legacy work.
Legacy Work
On the DWDE website, Leona describes legacy work as “perhaps one of the greatest gifts you can provide to your friends, family, and loved ones. To share your stories, advice, knowledge, thoughts, and feelings is something only you can provide, and it is an immeasurable gift.”
Whether or not we plan for it in advance, two things are certain. We will die, and we will be mourned by those who knew and loved us. Few of us give thought to directing and informing the conversation about us once we’ve passed. That’s what legacy work is about. It’s about helping our friends and loved ones ground their grief in something more tangible — more us — than their feelings and memories.
I’m reminded of artist Lizzie Rowe, whose stunning painting Dysphoria hangs in the Laing Art Gallery here in Newcastle. Researching for a blog post commemorating a visit earlier this year, I found a video by two of the late artist’s friends in which they discussed her life and work. It seems to me that visual artists have a head start in the legacy game. They leave behind tangible works which, one way or another, capture and evoke their life, interests, and nature. The same is arguably true of writers, in which case this blog and our books will form part of my legacy. My inner life is captured in personal diaries spanning more than five decades. What happens to them after my death is a different matter, and something I’ve yet to reach any decision about.
Mentioning our blog reminds me of another important aspect of legacy work. Digital legacy (or digital assets) is a broad term which encompasses everything a person owns and uses in the digital realm. It includes digital photos and videos, e-mail accounts, social media accounts and posts, blogs, websites, web hosting and domain names, and the technology and services required to maintain and access them. For someone like me who lives so much online, this is a big deal. It’s something I really do need to give thought to.
End of Life Planning and Mental Health
End of life planning is an important and healthy thing to do, but it’s not without potential issues. Talking with family and loved ones about what we want to happen when we die can be difficult for those we’ll leave behind. It’s a social taboo which deserves to be challenged — this is part of the reason Fran and I are so keen to address it publically — but it’s naive to pretend the taboo doesn’t exist or that everyone will be happy to enter the conversation with us.
It’s not simply that we’re unused to talking about end of life. In certain circumstances, it’s taken as a warning signal. Making preparations for death such as putting our affairs in order or gifting things to others is a red flag for suicidal thinking. It’s a valid concern and needs to be taken seriously, but that doesn’t mean someone living with mental health issues should be discouraged or prevented from end of life plannning. Every life is worthy of legacy. Nor is it something only to be set aside until old age, whatever that means. Death can find us at any age. I recently attended a one hundredth birthday. I’m unlikely to reach that milestone but can reasonably anticipate another two decades. Then again, I lost a dear friend to illness at the age of fourty-three. Another at fourty-seven. It’s never too soon to think about these things.
Legacy and mental health came to light in a recent conversation with my friend and fellow blogger Aimee Wilson. She mentioned a passage from High Tide Low Tide which discusses how stigma can be protective in certain circumstances.
The stigma surrounding mental illness is unhelpful and dangerous to the extent it makes people less likely to seek help, or speak to someone about what they are going through. Yet paradoxically, it can be protective to some degree. As Fran sees it, the taint of suicide would follow her even in death. She would be remembered not for her successes — her career, her books, her caring relationships, or the courage she has displayed through decades of illness — but as a failure. Whether or not she survived, she would always be “Fran Houston, that woman who tried to kill herself.” As much as she despises it, the shame of suicide helps to keep her away from the edge.
Aimee told me she’s found this insight personally helpful. It’s a reminder of how potent the wisdom we leave behind can be. Our book will be part of our legacy, and it’s something Fran and I want to preserve and protect.
First Steps and Next Steps
I’ve scarcely taken the first steps on this journey but I want to share a few of those steps, partly to hold myself accountable to following through on them.
My Wishes
One of the first things I did was to create an account at My Wishes. This is a free online service which guides you through creating and maintaining a number of key end of life documents including a will, funeral wishes, advance care plan, digital asset list, and bucket list. As I’ve previously discussed, bucket lists aren’t really my thing, but I can see they could be useful for others who are taking stock of their lives and what they still want to achieve.
Obituaries
Fran and I have discussed writing our own obituaries. This feels like a good place to start and might help inform other choices and decisions. There are a number of online resources to guide you through the process including exercises and templates.
Death Cafes
Fran recently attended a Death Cafe session led by Leona and intends to do so regularly. I hadn’t heard of death cafes but it’s a global movement with sessions held all over the world. According to the Death Cafe website, “at a Death Cafe people drink tea, eat cake and discuss death. Our aim is to increase awareness of death to help people make the most of their (finite) lives.” In Leona’s words:
A Death Cafe is a group-guided open conversation about death. (With cake!) There is no agenda, objectives, or themes. A facilitator is present to keep the conversation going (rarely necessary), answer questions, and correct misinformation. It is a discussion group rather than grief support or counseling.
Over 19,000 sessions have been held in ninety-two countries since they began in 2011. Fran found the session interesting and informative. So far I’ve not found any in person Death Cafes in my local area but virtual sessions exist so I may well give those a try.
Education
Aimee told me of a distance learning course she took a few years ago on end of life care including hospice care. I’d like to explore this and other courses to expand my knowledge and awareness.
Keeping the Conversation Going
I’ve started opening conversations about end of life planning with friends and family and will continue to do so.
Letting Go of the Balloon
I don’t usually discuss the titles or images I choose for my blog posts but this one warrants a mention. I didn’t want anything religious, trite, or obvious for such an important article. When I saw Roland Deason’s photograph at Unsplash I knew my search was over. Holding the string of my balloon is how Fran once described my role in her life and that of other trusted friends. The image and title express how it will feel at end of life — whichever of us lets go first.
They also remind me of a gathering I attended some years ago for a beloved friend who died way too young (whatever that means). We shared precious memories, planted a tree, and blew bubbles into the air. It was a simple and beautiful act of collective tribute and remembrance.
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