Daniel Miller
It was six days before her death. We didn’t know it would only be six days, but we knew that Sarah would not grace us with her presence for much longer. And yet the temptation is to describe the occasion as rather lovely and certainly fun. She had offered us each a glass of Prosecco, and had a small one on a warm summer’s day. But the real setting was this combination of Irish openness in speaking about death and an English love of black humour.
She is talking about what will happen to her corpse: “No reason why you can’t put me in the dining room. I’ll be very quiet. I’ll be good…he’s going to put me in a pair of pink silk pyjamas. I have never worn a pair of pink silk pyjamas in my entire life. Not too worried what shade it is.”
Listening now to those two hours of recorded conversation, the dominant sound is of constant banter and laughter, Sarah reporting the look on the face of that girl at the funeral parlour when she realised that the funeral Sarah was organising was for herself. Black humour gets us through life − and death.
Terminal care is almost entirely in one’s own home; people tend to come to the hospice only for brief periods to control pain, or regain some energy or take up various kinds of outpatient and activity sessions, such as counselling.
So, unless this is literally the deathbed scene, it is actually a time when you probably don’t want to see anyone at all. But when Sarah last went in, she had nine visitors on the first day. Fortunately, after that her ever-loving and highly sensitive husband put a stop to it. She had made a rather crucial mistake. She had posted on Facebook that she was going into the hospice so everyone immediately knew and this had caused the crush.
In every other respect, Facebook was a gift, a gift to Sarah and from Sarah, but then giving is what Sarah is all about. She was diagnosed with cancer 10 months previously, and this was confirmed as terminal four months before we met.
It’s clear in retrospect that much of her time has been spent trying to think of ways that this terminal prognosis could be turned into something of value to others. But she would never in a million years have predicted that the means to achieve this would be Facebook. In fact, up to that moment she had never been on Facebook.
It was the perspicacity of her son who had set up a Facebook account on the day of her diagnosis.
Quite quickly, she sensed how this new relationship with people outside could transform her relationship to what was happening to her inside. Facebook would be her extended voice teaching the world about something that they needed to hear and were reluctant to confront, which was the experience of cancer and dying. Sarah was as aware as anyone about the need for this, having spent more than 30 years as a nurse and having witnessed the ignorance, misconceptions and denials. So Facebook would give her a final purpose, a means to turn all this negativity into something positive.
Despite their protestations to the contrary, it often tends to be older women who take as ducks to Facebook’s water. This is social media, and in most families it’s the women who do the business when it comes to keeping the conversations going, the business of simply being social. It’s one of the comments the family often made about Sarah, well before Facebook.
Glue
She was the glue, the chain, the one who kept the extended and extensive family linked, beyond the weddings and the wakes. She knew what had happened to whom and she told the others; not gossip, just the kind of sharing that makes family something more present and real.
When trouble had come to one part of the family, she had been the person who had helped those children get through their parent’s divorce. So a new technology that could bring with it a network of people and enable them to feel closer just fell straight into her lap.
The story is there, scrolling through her Facebook account. It starts with a gradual build-up of people, though there were newcomers joining right up to her death. Lots of positive messages respond to the postings about her scans and chemotherapy:
“Sarah, what a joy to see your beautiful smile. All the Ryans on this side of the pond are holding every positive thought for you and sending them with wings of love.”
There was plenty of hope in that initial period. On the one hand, Facebook became an effective way to keep people appraised without having to tell them individually. Being a nurse, Sarah had no qualms about including the details.
But this is constantly interlaced with humour: “Tried on wigs at Selfridges post scan today, I looked a right Herbert − think I’ll go bald in next three weeks with as much dignity as I can muster; depends on the shape of my head.” Sarah was as good as her word; she went for the bald look. It wasn’t that this appealed to her in any way, she just felt wigs were still worse.
But, while the words help, they cannot heal, and the news gets worse until:
“I have been discharged by the surgeons and referred to the oncologists for palliative chemo, but have already decided to refuse. I want to claim my body back now and go with it. Sorry since the 9th Jan, my surgery, if I have acted out, but I am still in shock and hugely upset with the inoperable result. It’s a shock. If you were in my boots, how would you feel? Anyhow looking for a hotspot in Europe to go and relax and enjoy what’s left. xxx”
Even with this, one of the worst communications anyone could receive, there is always the sense that the pill must be sugared with humour in order to be swallowed. “Had holy communion but unfortunately my mobile phone went off with some rock song.”
What you experience on Facebook is her honesty about the steps and stages that have to be accepted, dragging you to a place you haven’t the slightest desire to reach but which keeps getting closer.
The appeal of Facebook lies in her insistence that dying is something to be open about. For her, the crucial point is that most people don’t have to confront these things and, without comparative experience, they are even more scared and anxious. She is sure there is a benefit to sharing her death and also her acceptance. Facebook gives her that presence, makes her gradual demise visible and so also meaningful.
Posts
Reading her posts and the responses, it becomes clear why for Sarah Facebook was nothing trivial, but as with the hospice itself, she felt that the period of her dying had enabled her to discover new things that were both profound and good. She tells us, “For me, what I write on Facebook comes from my inner thoughts, more like reading a book. Created in my head, it’s my feelings and thoughts at their purest. I may not have something to say every day . . . It’s through Facebook that a lot of these people have rolled back into our lives. It’s incredible.”
What Sarah and her husband realised is that over the years they had developed many good close friendships. But there had been a natural attrition as people moved or kids grew up. But in many cases the closeness remained, and some of those who were most effective in using Facebook to give support and show how much they cared were people they hadn’t actually been much in touch with recently.
So instead of friendship representing the transience of their current network, it was like all the best people from all those different pasts coming together to remind them of the whole 54 years that were now coming to an end but which had been so full, not least of people and love.
Sarah is very much aligned with the ethos of the hospice itself that dying is a stage of living. But is it going to be a stage that shrinks people down till they fade from sight? Or a final chance to expand oneself and the world? In precise accord with the hospice director, Sarah’s clear desire is to use Facebook to make more of life while she still can. It forms one part of her general attitude to this acknowledgement of dying itself as something which, like any stage of life, can either be lived to the fullest or wasted.
