When you take time every day to be online, it’s a big wide world! I find it amazing to be in touch with you now. I have a love-hate relationship with social media. I love its window on friends, family, and a community of people with rich interests. Its 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?

Today most of us get news on social media, eight out of ten people use Facebook, and often spend at least half a day a week there. I’ve learned about developments at all stages of friends’ lives on Facebook and Twitter.

The time we invest is a kind of devotion. In fact what we do online becomes an account of our life, as Nancy Westaway recounts as she ‘re-reads traces’ of her husband, in her article Modern Grief. Through my blogs I’ve got a heap of content out there. Will anyone go after it when I’m gone?

The online love project is generous

In this post I’m thinking of screen time in a way some would scorn. As a kind of love project.

Online modes of communication are embedded in contemporary life, so much so that they now change our way of going on a health journey and into death. The online experience I’ve observed, for carers and people who are sick, 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 shared 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.”

If social media spawns extraordinary generosity, doesn’t it have amazing potential as a love project? You may have followed 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 is another venture that jolted viewers into reviewing their intentions in relationship and making the most of life.

Time, expression and 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 knows that death is imminent. The world is at home, largely in one room, or 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. 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 can offer a welcome distraction. A carer’s focus is on the intimacy of caring, doing their very best for the one they love. 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.

Equally there’s purpose online for the person who is sick. The posts she shares are positive and nurture hope. She shares about gardening, urban futures and socially just ventures. She takes up the question of purpose in one post. It’s about 91-year old Morrie, who’s been bedridden in a home in Michigan for some years, and is fulfilled by crocheting beanies for homeless people.

Then she’s asked on Facebook about random seedlings coming up in a pot where old tea was thrown down as mulch. What will the tiny seedlings in the photo turn into? Are they aniseedlings? Oh it’s a love project when perhaps for the last time, she may give garden advice.

Social media love project

In touch

If you desperately want to know what’s going on with your friend you can check into Facebook or Twitter. Oh there she is at a party she briefly attended.  She’s still enjoying food.

If you have to be away in Thailand and feel a terribly long way away, you can keep a vigil with the one you love on Facebook. I was amazed to hear how this felt when a friend described her experience. She knew without doubt that the end had come through watching the timing of posts.
Through everyday communications, writing and commentary, the online space is bringing us in touch over death, softening the taboo. Check out this Paul Bisceglio in the Atlantic, four-years old now but still rich and relevant. There’s so much content that can help us approach our own and our family and friends’ end of life more openly. Truly a love project.

Closing social media accounts

There are countless enduring memorials on Facebook. To end a social media account is huge. No wonder so few people act on the simple instructions about how to do it. To close an account is to wrap up images and statements that make up an identity and contribution, of a certain world of connectedness.
You may have had this experience. You search your friend’s name. All those events that shaped your mutual lives, the important causes, the projects and qualities are nowhere to be found online. All that content has gone.
What’s your experience of social media at end of life? I’d love to hear your stories. I know being online not a love project everyone would choose, and when I find out that my days are numbered I may well give screens away. In fact if there’s one thing I’d like you to take away from this post, it’s to respect others’ wishes when it comes to end of life.