LifeSearch (a life insurance company) have posted the results of a new study that they have done, into how prepared people are in managing their digital assets/social media after death, and found that a large number of users want their data cleared automatically on death, whilst others want to hold onto e.g. e-books/music, and photographs for the benefit of others post death:
Currently, when a person passes away, loved ones face substantial paperwork to deactivate social profiles and mail accounts. Processes differ between sites and providers, but can include having to provide death certificates, sharing copies of ID, filling in forms and giving extensive information about the deceased – and some will only work with immediate family.
What happens to our digital data when we die? A survey found 24% of us want it to just disappear, but @drbexl says – as the first generation to have to grapple with this – it’s better we clearly set out what we want in each case. Listen: https://t.co/yUm0YWvYjU / @UCBMedia
*apologies to the UCB team and any listeners for the bings – my work email was up in webmail, and I thought that the noise of me closing it would be worse than what I hoped was just one email bing!
We looked at the story from a professional angle, how do we encourage people to think about how to use social/digital media well, and that includes thinking about what happens to them when we die (whether that be expected or not), and I mentioned that I’d been thinking about my funeral, and have started thinking about my digital assets, though I have some work to do in that area (I’m thinking a digital file that I give access to specific people for).
I only meant to start this book, but I finished it in one sitting. A really lively book, with much humour and insight into the life of a woman (younger than me) writing near the end of her time. Following hard on reading Rachael Bland’s book, there’s a challenge to live well, to enjoy the ordinary, but also that terminal cancer does not make one a brave, inspirational saint.
I enjoyed this (YA) book – it could probably highlight earlier on (rather than in the notes at the end) that it’s dealing with a fictional disease – but I enjoyed it as a concept in a rather dystopian kind of way … and in dealing with cancer which can make you feel rather cut off from ‘normal life’ recognised some aspects of that. Kind of book I needed when my body wouldn’t go to sleep after an operation!
This was a really resonant book for me to read at the moment, also preparing for Stage IV cancer treatment, and considering the impact on my life/faith, etc. Apparently I made 65 highlights on this book… and I think I’ve made them public… one of them was about friends coming round with armfuls of Kale (lol!)
Also useful more widely for tackling the prosperity gospel, and encouraging to see that overall identity not lost to cancer!
I always find Lesley P’s books very readable. They often deal with quite dark topics, this one majors on female friendships and recovering from a nightmare childhood, amongst which there are heartwarming moments, laughs, and questions of how do you move on from those difficult times.
I’ve read a number of books related to concentration camps recently, and visited both Auschwitz and Mauthausen, both mentioned in this book. This book was recommended in another book with enough power to seek this one out – including the hook that as a ballet dancer, she was forced to dance for Mengele (and held her mother’s words that others can take everything but your mind from you).
One of the powerful things about this book is that Eger, as she weaves in her own experiences with those of her clients when she trained as a psychologist after the war, is that whilst she talks about becoming a thriver, rather than just a survivor, she doesn’t pretend that this is easy, or that this will happen overnight, or that you’ll no longer be affected by the trauma.
Eger also talks powerfully about there being no hierarchy of suffering – comparison may lead to us minimising/discounting our own suffering – but rather than saying that our suffering is less significant than someone else’s, we should think ‘If she can do it, then so can I’. Even those who moan about the smaller things in life (e.g. wrong colour car) are really thinking of something bigger that they are unable to express.
As someone who is heavily reliant upon the NHS for cancer treatment, Clarke gives an excellent insight into the turmoil in the NHS… something I’ve seen: watching overworked nurses trying to give us their best care, and meaning that we don’t want to be ‘difficult’ means some things can get missed.
I enjoyed reading this – unsurprisingly as Clarke used to be a journalist (and I also enjoy her tweets), and nicely wove together stories of medical procedures that she’d been involved in, and tied them to a sense of how this impacted how she got engaged in the Junior Doctors strike – ending up the face of some of it, the issues caused by the underfunding of the NHS, and how her own life and family have been affected by the NHS as medics and as patients.
I woke up early this morning (unusual) and sketched out the idea for this blog post, noting that Rachael Bland’s last tweet had struck a chord (and not just with me).
In the words of the legendary Frank S – I’m afraid the time has come my friends. And suddenly. I’m told I’ve only got days. It’s very surreal. Thank you so much for all the support I’ve received. Debs and lozz will continue with the #youmebigc podcast. Au revoir my friends. ?? pic.twitter.com/DhMurbqMJz
By the time I’ve come to edit and post, Rachael has sadly died:
Our beautiful, courageous Rachael died peacefully this morning surrounded by her close family. We are crushed but she would want me to thank everyone who took an interest in her story or sent messages of support. You’ll never know how much they meant to her. Steve and Freddie xxx pic.twitter.com/soq7YHvF9u
I felt like I’d got to know Rachael through the fabulous #YouMeBigC podcast on BBC Radio 5, which is currently in it’s second series… it was already doing well, but yesterday got to the number one spot:
We did it @GIRLSTOLELONDON@bowelbabe@MikeHolt12. #YouMeBigC is #1 and I promise you @Rachael_Hodges is very happy about it. While we’re at it, I’m doing my best to read as many of your messages to her as I can. Can’t tell you how much comfort they’re bringing us all. Thank you.
I had also had a handful of short DM chats, and listened to her chat with another friend, Kate Bottley – covering death, faith and all sorts. Knowing that quite a few people have found it hard to see stories about Rachael in their timeline (as it is something they don’t want to think about – too close to home), I loved this quote, referring to the fact that the podcast had changed the conversation round cancer:
Above all, Bland reminded me how social media can still be a huge force for good. She had found personal comfort from people sharing their cancer stories, so she continued to share hers. Her treatments, her days out with her husband and young son – and her race to write a memoir for him – were all documented with purpose and beauty. Guardian
If we get the funding from Macmillan, I hope that we can continue expanding that conversation, and highlighting the strengths and weaknesses of social media as a space for people affected by cancer.
Just to give a sense of how much Rachael affected people’s lives see:
And here her podcast pal Deborah James talk about how it’s possible for one person to make a difference (see also her article):
“She leaves a wonderful legacy”#YouMeBigC’s @bowelbabe pays tribute to her friend and co-presenter @Rachael_Hodges, and says we need to “celebrate her life and continue the work she started”.
With an awareness that treatment options were running out (both triple negative and metastatic cancer are things that need much more research), the first podcast of the second series was focused on the topic of ‘death‘, and the focus was that we need to accept that death is a natural part of life (it’s the only sure thing for all of us), and stop using euphemisms, etc…. and you’ll see her colleagues avoiding ‘passing on’ and saying ‘she’s died’.
One of the things that has kept me going through treatment, aside from the huge amounts of support – digital, practical, prayerful, was having listening to a Greenbelt talk by my friend Andrew Graystone, about his own experience of prostate cancer, and one of his opening lines was ‘I’m going to die as many times as the rest of you, just once’. We’ve had conversations before about the fact that everything is talked about in 5 or 10 year survival terms, which makes you assume that that’s the best that you’re going to get – so it’s been lovely to hear from people who are 30+ years on, and from another friend that they rarely see people in the palliative care home, because it’s ‘rare’ for people to die from breast cancer these days… though that rarity includes people like Rachael – and is 11,500 women per year. The 5/10 year survival rates are basically tied to research targets – no one wants to fund hugely long-term studies!
When I attended ‘A Space for Sharing‘, we talked about the fact that those of us with cancer are much more aware of death – it has come so much closer. There are some who really struggle with the social media spaces and forums, because you see the best and the worst of everything – including when people die. As the Chief Macmillan Nurse said, however, once you are in ‘the cancer world’, you are in a circle of people where the likelihood of death is higher, and this has always been the case – whether in physical support groups, or now online support groups.
Within Facebook groups, there are spaces made to remember those who have died, a couple that have affected me particularly include:
Mhairi Fleming, a friend of my cousin’s, who gave great support online, and introduced me to YBCN, posted this video about her expectations about death (from a faith perspective). She was diagnosed with secondaries about a month after I was diagnosed with primary breast cancer, and her funeral was held on the day I had my first chemotherapy (benefit was being able to see the love poured out for her via Facebook, and also people sharing things that had struck them at the funeral).
With death in mind, it certainly makes you think about how you live, and not making life about ‘waiting for retirement’. I waver between ‘I really want to be a Professor, and I want to be one sooner rather than later’, and ‘there are more important things in life than work, so don’t lose the rest of life’ – this is not something particularly new to me obviously… but there’s a new intensity to it. There’s a certain amount of peace about the hope I have for when I die, but it’s very human to hope that that won’t be for some time!
Really fascinating piece and a good reminder as to what are the important things in life – as expressed by those on their deathbed to their nurses.
1) Living a life true to yourself
2) Not working so hard
3) Having courage to express true feelings
4) Stayed in touch with friends:
It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.
5) I wish I’d let myself be happier.
When I trained as a coach, one of the exercises that we focused on was getting people to write the eulogy that they hope might be given for them when they die (death is about the only certainty in this life, right?), and then work out how to make life fit with that. I’ve been making various steps backwards and forwards in this recently, and wonder whether the amount of time I’ve spent decluttering has helped (it’s certainly helped clear my brain – I know that the things I still own I use or value in some way, rather than ‘just in case’) … or whether I could have used that time out with friends…
LifeSearch (a life insurance company) have posted the results of a new study that they have done, into how prepared people are in managing their digital assets/social media after death, and found that a large number of users want their data cleared automatically on death, whilst others want to hold onto e.g. e-books/music, and photographs for the benefit of others post death:
