A good friend is visiting, a friend who has a potentially terminal cancer – which is also a potentially survivable cancer. This is a friend who has helped raise my kids, and helped care for my ailing mother. And she needed to talk about death, frankly, explicitly, and very few people in her life are able to talk about it with her without becoming distressed and uncomfortable.
So, if you read this blog – you know I have written a fair amount about death and bereavement. My mother died of cancer a few months ago after a long period of dependency and disability, and before that my grandmother-in-law died (she was very old, almost 102 and we had taken care of her for a long long time) A few years earlier, on the same weekend while I was at Disney World my father (a fall/ head injury secondary to narcotics dependency) and one of my two oldest and best friends (AIDS), both died. My father-in-law passed away (after a seven year cancer process) – about thirteen years ago: I know this because it was in the middle of the adoption of our first child, and we paused the adoption process for our mourning and bereavement. And a few years before that – just after I became a social worker – I lost my my “best” friend from high school & college (AIDS).
Other than that: My mother-in-law died (cancer) a few months before I met my husband and his family in fresh bereavement. I’ve lost all my grandparents and their peers by now of course – And I lost many mentors and teachers and my step-father as a result of the AIDS crisis.
And I’ve had many clients die, and clients who come to my office to talk about deaths that have transformed their lives – deaths that annihilated their former ways of being and forced them, unwillingly and forevermore into a new world. And clients who talk or fantasize about their own deaths, their fear of death, or their terminal – or potentially terminal diagnosis. And those who cannot talk about it. I’ve also sat with people – in and out of my office – as they have talked about terminating their own lives– sometimes as part of a conversation about terminal illness and “death with dignity” and sometimes because they were in the throws of a pernicious, torturous depression and contemplating suicide.
And I’ve had too too many clients in the throws of perfectly healthy bereavement processes come to my office simply because no one around them had any willingness or ability to sit and talk and listen about death.
This isn’t just my job, to be able to talk about death. It is everyone’s work. If not yet, soon. If not soon, eventually. We will need to find the words and the capacity to listen and to face our fears for those we love. And for our own sakes.
But believe me most won’t do it until they are forced to. And they will do anything they can to get away from it, using every tactic in the book: denial, avoidance, minimization, magical thinking, victim-blaming, death-denying “power of postive thinking” and sometimes even aggression and just plain rudeness when all else fails.
I’ve watched this phenomenon throughout my mother’s dying – people in stunned silence when I would name what process we were all immersed in. I see it in the face of some (not all) of my new neighbors when they ask how my recent move went – and I tell them bluntly and directly it was actually crazy traumatizing because my mother began dying in the middle of it all.
I watched people I was generally friendly with – who knew what was happening to us, kind people, “normal” people, refuse to name or acknowledge or ask about or incorporate the reality they knew was upon us.
I felt the extraordinary relief when my mother’s hospice workers arrived who knew how to talk this talk. Explicitly. Without beating around bushes.
It is not a hard language to learn, it really isn’t. You just have to be brave and take a deep breath. To refuse to let fear drive you to abandon those you care about.
You just have to say: “I’m glad treatment is going well and I’m sending you all positive thoughts – but if you ever feel frightened I can always listen”
“I’m with you, and right behind you no matter what lies ahead – either way I’m sticking right by you”
“You never need to worry about burdening me – I don’t need to be protected”
“Lets get together and shoot the shit! And if you ever need to talk about the harder parts of all this – my ear is always open”
I don’t love the boilerplate: “Oh, I’m so sorry” – although of course I have used it myself – because I have experienced deaths that I was not sorry about at all. Not one bit. And even when I am sad, the statement makes me feel like an object of pity. Pity offered instead of actual support.
Bereavement and dying processes can be a relief, a liberation, temper tantrum, a trauma, a terror as well as – or instead of – a sorrow. There is no one size fits all response to death. Your experience with death is not mine, and mine is not anyone else’s.
And if you ask “So how are you doing?” with furrowed brows, be prepared to actually listen without requiring that those who are contending with death, in one form or another, confine themselves to your preconceived notions about how they are supposed to feel.
I have a wish that more people could be brave for each other when death emerges on the scene. It is not a conversation that anyone wants to have – but if we fail to have it, we abandon those in our community who are (or might be) dying, in their hour of greatest need. It is so much worse to have to hide it, to press it out of polite conversation, to have it silenced and shushed. To be isolated in it for the lack of anyone willing or able to talk frankly and openly.
We have to learn, and re-learn, as a culture, how to be braver in the face of death. To stare down the primal existentialist dilemma for the sake of each other.
Death isn’t a failure. It isn’t shameful. And it isn’t impolite. It can be frightening but it is a moral imperative to be courageous for those we love and care for.
It isn’t “negative” to discuss death. It is healthy and self-regarding – especially when it is on the table as a potentially imminent event. We need to develop, as a culture and as individuals, a basic literacy about death, to learn death-talk, so that we don’t have to leave people alone in the hard process of preparing to say good bye.
The best sexual education curriculums teach people how to communicate about sex and sexuality. It is vulnerable, frightening, uncomfortable, exposing to talk about sex, yet – we generally understand that it is healthy and necessary to do so. We have no common curriculum to teach lay people about how to talk about death and dying.
We all need to practice forming the words in our mouths, and listening to threatening content. If you are reading this I encourage you to challenge yourself, challenge others. Initiate frank conversations with your parents, your partners, your children, your friends. Learn how to say the words, learn how to name the fears, learn how to move past the terrors – the fear won’t go away, but it needn’t control us. Practice telling others about losses you have survived or are negotiating. Ask others to practice listening. Let other people talk about their losses, their health or lack of it, their fears. Practice being braver so that those immersed in death and dying processes don’t have to protect you on top of all the other hard hard work on their plate.
It will probably always be necessary to have “experts” – hospice workers, thanatologists, chaplains, clergy, psychotherapists who will speak and listen into these conversations, but this work should not be reserved for experts. To live in authentic community with each other, we all need to speak this language.
It is one of the most pervasive manifestations of ableism – the way we refuse to face our discomfort and anxieties and subsequently abandon those who are facing down death and dying. It didn’t use to be this way. This didn’t used to be a professional specialization.
It is one of the shadow-aspects of psychotherapy as a profession: that as these conversations are relegated to the therapist’s office, everyone else gets to abdicate their responsibility to withstand these conversations for themselves. We allow our listening skills and capacity to lay undeveloped and atrophied. We’ve professionalized this conversation so that the rest of us don’t have to face down these anxieties for another’s sake:
“Let me give you my therapist’s card: You really should talk to someone about that.”
Why should people in healthy bereavements need to see psychotherapists at all? Only because no one else thinks it is their job to withstand those fears and listen.
I wish we were more willing to be disturbed for one another’s sake.
I used to be fascinated by mediums and their hokey TV shows, because – cold reading or not, con or no, they could talk openly and frankly about death – which I suspect was as relieving to their clientele as any “message from the beyond” that came forth.
And skeptics mock those who turn to psychics to seek comfort – but really how many spaces exist for those who are being transformed by death and dying ? Mediums, clergy, some psychotherapists, bereavement counselors – Almost everyone else wants to avoid the subject.
And too often the dying can’t even talk to their doctors about it, because doctors are afraid as well.
Such a cruel double bind.
When we don’t let fear control our response – we are rewarded with each other’s intimate company, with presence, with connection and with surprising joys and closeness.
Let’s practice. Let’s get to it. It is the one great universal – it is the single experience that we must all contend with and it has the power to connect us as nothing else can.
Let’s us all take it on as the normal work of life.
Ellie Conant, who I wrote this piece for, died on Jan 1st 2016.
It is a great happiness to me that this post was explicitly helpful to her – she shared it with friends and family to help them talk with her about the realities she faced.
(And I should also mention here, that she mocked me mercilessly when she uncovered my guilty secret: saved episodes of John Edwards and the Long Island Medium)
Part of our job as the survivor of a loved one is to integrate their life lessons, their core values and manifest them in the world. This is grief work.
In that spirit: I am attaching a request to this popular post:
Before her death, Ellie spent time thinking about her legacy, the causes and the people on this planet that she most wanted to support – projects that would serve as extension of her core values and passions. She decided that her memory would be most honored by caring for LGBTQ youth in Korea. With the help of Astraea Lesbian Foundation for Justice we are able to direct donations made in her memory toward a shelter in Korea for LGBTQ youth, as well as other projects.
Please help her extraordinary and nurturing spirit continue to work for change, compassion and liberation in this world.
Please share this post and follow this link to the Astraea donations page, and be sure to indicate that your donation is in memory of Ellie Conant.
Donations will be accepted through June, 2016–both the month of Ellie’s birth and the annual Pride celebration she loved so much. How fitting that we support her in spreading Pride into the world.