Digital life and death, a love project

In 2022 we need digital technologies for our lives, and for our end of life journeys. The last two years and subsequent pandemic conditions have shown this. When I wrote the post Digital life and death, a love project in 2017 it wasn’t so clear. When I wrote for Innovageing in 2018 on tech’s role in aged care  it was about nascent practice in the field.

Now, there’s never been more content to can help us approach our own and our family and friends’ end of life more openly. Truly a love project.

Since 2017 Instagram has become a popular platform for content on death, rituals and grieving. Imogen Carn and Sally Douglas’ podcast and Instagram Good Mourning for example. Angela Kotis’ Unwilling Widow. Their style is supportive and authentic. They show up consistently for their followers.

Seeing Amiel Courtin-Wilson’s documentary Man on Earth in 2022’s MIFF led me to revisit the 2017 post and 2018 article. Man on Earth is an account of a man being himself in the time before his assisted death. There are a number of compelling themes such as the different attitudes of family members; values relating to a well-lived life; the nature of contentment. And I was most fascinated by the role of tech in the subject’s life. His phone. FaceTime. Alexa. We are interwoven with tech right into our last days.

The 2017 post update

I’m a digital citizen. I love social media's window on friends, family, and a community of people with rich interests. It's window on all of you: colleagues, activists, clients and parents of kids. And I go up and down with the whole online thing, I sometimes wonder, is this something I’d just drop if my days were numbered?

The investment many of us make in social media is a kind of devotion. What we do online becomes an account of our life. Nancy Westaway speaks of re-reading traces in Reading My Dead Husband’s Emails, how my husband’s digital ghosts helped me mourn.

I think of my own content. Will anyone go after it when I’m gone? Possibly. Possibly not. 

Digital journey - updates and encouragement to the end

Online communication is embedded in contemporary life, and it changes both the way people go on their health journey and into death, and the experience of those who survive the person who has died. For carers and people who are sick, the online experience often contradicts the view that it’s a shallow way to be engaging with life. 

I’m thinking of one friend who shared the ups and downs of chemo on a private Facebook group in a revealing and thoughtful way. I’m thinking of ex Premier Anna Bligh’s description of friends’ and colleagues texts when she took the step of putting aside her professional politician demeanour and sharing her cancer diagnosis. “Our phones filled with words like ‘heart’ and ‘prayer’ and ‘thoughts’ and ‘care’. We began to feel as if people were wrapping their arms around us.”

Social media can spawn extraordinary generosity, whether in terms of material gifts or vital encouragement. In my book Death, a love project I highlight the story of 36-year old Kristian Anderson, a sound engineer who needed an expensive treatment. When his need was put out to the music world, audio engineers and musicians around Australia donated over $5,000 in a week. The vast majority of them had never met him before. Kristian’s YouTube posted to his wife Rachel on her 35th birthday went viral. It was a venture that jolted viewers into reviewing their intentions in relationship and making the most of life.

Time, expression, purpose

The idea that being on social media is a waste of time doesn’t stack up when you think of how people who are ill or facing death make use of the online sphere. Time’s quite different for a person who’s dealing with illness or, like Robert in Man on Earth knows that death is imminent. The world is at home, largely in one room, perhaps in a hospital ward. As energy subsides, the circle of face-to-face closeness draws in to family and close friends. Doing things takes effort.

Online communication is perfect for these conditions. FaceTime is intimate. Texts and social media messages are brief. They’re mundane in the best possible way. It’s a means of being in touch without getting too tired. It’s a way of learning what others are up to. 

As a visitor you feel so much better sending a text than calling. It’s like sending a text to someone you know may be up at after 11pm without having to wake anyone.

Social media posting can be purposeful. When a friend posted from the hospital bedside last year I could see how much she enjoyed engaging with social issues, sharing posts about Indigenous rights, Mum’s for Refugees, homelessness, Free West Papua. She had a chance to express an important aspect of her life.

When Glenda who many have got to know through Death, a love project was ill she shared posts that were positive and nurtured hope - about gardening, urban futures and socially just ventures. 

One time a friend on Facebook asked her about random seedlings coming up in a pot where old herb tea had been thrown down as mulch. What would the tiny seedlings in the photo turn into? Could they be aniseedlings? It’s a love project when perhaps for the last time, Glenda could give garden advice.

In touch in an everyday way

Through everyday communications, writing and commentary, the online space is bringing us in touch over death, softening the taboo. Paul Bisceglio wrote about social media’s role in opening a broader conversation on death in the Atlantic, in 2017 after being affected by a popular US radio host’s Twitter feed during his mother’s end of life journey. The article remains rich and relevant. 

Closing social media accounts

There are countless enduring memorials on Facebook. Often people simply do not act on instructions on how to close accounts.

To close an account is a relief for some, who don’t want to stumble across their loved one’s online presence. For others it is very sad that this presence goes and they lose access to images and statements that make up an identity and contribution, of a certain world of connectedness.

Be sensitive in closing accounts. Let followers know. Allow a grace period. Put yourself in the shoes of someone searching their friend’s name perhaps to look at an activity they shared. Suddenly ... nowhere to be found online. The qualities and characteristics and events that shaped mutual lives and projects. All that content gone.

What are your thoughts on this topic? I’d love to hear your stories.