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Living faith-full community in the face of trauma. Explore how digital community exposes a God who calls us to campaign, collaborate, and care.
There are many reasons why we have arrived at this session today. Support Bex - enable her participation in a long day. If JCD is honest, this was key to the idea behind this session…enabling Bex’s voice to be heard in a place where she is most at home, among her people, and recognising that she is still a leader in this field – no matter what diagnoses impact on life. Slightly voyeuristic – some of us are here because we have seen some of Bex’s work, or else have had our own experiences of trauma, and we want to see a live specimen! - how do we start talking about cancer and illness and pain in a way which doesn’t alienate the diagnosed in favour of our own interest. Slightly nervously and with careful trepidation - Because this is about us, our mum our sister out dad our brother, our friend, our lover, our neighbours. – This subject is close to home because it is about us. It is about our lives.
The body of Christ…
We want to help start and shape a conversation which take the physical presence and the online presence hand in hand.
Significantly, we wanted to embody the story of cancer, and how it impacts faith development and the Church. Much charity-based story telling has been based on absence. It’s gut wrenching and sad and powerful, but almost always tells the account of someone who becomes absent in their story through illness or death. Thankfully this is changing and …
Our key intention, and headline for you to take away, is that The Body of Christ has cancer – and that those living a day to day life with this reality have a story to tell. People are not to be hidden away, their story in hiding until their memory is eulogised. Each of us have a life to live, and for many of us, cancer will be part of that story. But in our digitally rich world we need to find ways to help people embody their story in the everyday; both on and offline.
https://www.bbc.co.uk/iplayer/episode/m0009n4r/strictly-come-dancing-series-17-week-5 Will Bayley/Strictly (2.5 mins)
*Excuse the slightly echoey sound, couldn’t find on YouTube, so had to screencapture from iPlayer
BIBLE: When it comes to community, the Christian Community often turns to Acts 2:42-47 to describe what community (or koinonia) should look like.
Bex and I are going to have a conversation about some of these themes, shaping Bex’s story alongside accounts and experiences from Rachael Bland, Simon Thomas, The Big C Podcast, and The Cancer Patient Instagram.
DEATH: V42 – teaching is about life and death: ‘42 They devoted themselves to the apostles’ teaching and to fellowship, to the breaking of bread and to prayer. ‘ FGICF – Wounded and fully present (p100) How do we talk about death well? The reality of Stage 4 – mental gymnastic of not knowing if I’m going to live for 3 months, 3 years or 30years
(Living authentically as before (not being ‘just’ cancer) – esp living with Metastatic (not knowing if have 3 months, 3 years or 30 years to live – but knowing that death is a certainty) … living with that )
Grief and loss – how online communities help/perpetuate these cycles (noting social shaping of technology, but also technology gives some shape to options)
Have also planned some of funeral - https://drbexl.co.uk/2019/06/30/life-cancer-planning-a-funeral/. - sorting out powers of attorney, etc. (not tempting fate)…
Tried to share ‘the reality’ of cancer – not a ’pretty pretty insta version’…
LIFE: V43 – what does life to the full look like (Or If Only Jesus had Kale…) ‘43 Everyone was filled with awe at the many wonders and signs performed by the apostles.' Crock science about what brings life. Can Kale cure cancer? Humour No magic
Rox has regularly been sending these via FB messenger over the past 2+ years. She’s now hoping to turn them into a book…
VULNERABILITY V44 – holding everything in common - 44 All the believers were together and had everything in common.
FGICF – Honour the stories (p47) If the Body of Christ has cancer, the Kingdom of God has chemotherapy (and how does that affect what we do, and how we do it…) – all hold the story Brene Brown on being wholehearted and authentic (link to authentic self work online) Online NHS campaigning #waitingroomfeet RING THEORY
#WaitingRoomFeet (demonstrate amount of time spent/solidarity/privacy)
SAFE PLACES V45 – meet the need ‘45 They sold property and possessions to give to anyone who had need. ‘ Online community as safe place Cancer community – the club no one wants to join Surveillance as positive
*Looks different for different people – and at different times in the (cancer or equiv) ‘experience’ - current research project in planning… Blogs - partly to save explaining self (listening to what person wants/needs) *Trust – online – in sharing – need to trust – lot of work by admins to make safe space…
A MESSAGE TO THE CHRISTIAN CHURCH V46 – met together for worship ‘46 Every day they continued to meet together in the temple courts. They broke bread in their homes and ate together with glad and sincere hearts, ‘ FGICF – Fear when worship is difficult (p75) Where is God for the wider family [Thomas and Bland – husbands have a stronger faith] What are the struggles to engage in church worship? What does discipleship look like in the online sphere What not to say to someone (bingo sheet)
*but also be aware wish would say something rather than fear saying the wrong thing
What does it mean to be ‘the church’ online? *Physically immune system too low to attend in person (balance between wanting independence/feeling lonely - but only gives 24/7 company) –also note that I’m quite outgoing, but didn’t feel fully settled in a church before diagnosis so really hard to go – 4-6 times in 2 years, and 2 of those ended in tears (don’t feel safe)
Listen to what people need – include them, offer help (don’t be offended if not taken up, keep asking)…
Sometimes it’s conversation, sometimes it’s delivering (useful – or fun) things, sometimes taking some food (remembering some food banned/taste buds go weird), giving a lift, sometimes it’s talking through difficult things, sometimes there are fundraising campaigns… *going beyond thoughts and prayers, valuable as those are…
Photo by Joanna Kosinska on Unsplash (writing, post things) Photo by Isaac Mehegan on Unsplash (car ride – even if unfamiliar) Photo by Eaters Collective on Unsplash (food)
“Digital wellbeing considers the impact of technologies and digital services on people’s mental, physical and emotional health. We can view this from an individual perspective in personal, learning or work contexts. This means understanding and identifying the positive and negative impacts of engaging with digital activities and being aware of ways to manage and control these to improve wellbeing. We can also view digital wellbeing from a broader societal or organisational perspective where service providers need to recognise and take responsibility for ensuring that digital systems, services or content are well managed, supported, accessible and equitable. They also need to empower and build capability in their staff, service users and partners to engage with these in a way that supports and or improves their wellbeing.”
Conclusion: Note that digital has brought this conversation/community together
What would you add into this discussion? [Discuss in groups if time] It’s OK to just tell more stories
Open the ‘pastoral space’ *be aware that people in the audience may be facing own things - cancer – personally – or in the family…
Digital Theology: The Big C #PremDac19
Digital Theology: The Big
Rev Dr Joanne Cox-Darling
Dr Bex Lewis
• The body of Christ has cancer
• It’s messy and bloody.
• It’s about life and death and the duvet days in
• It’s full of community and life-givingness.
• It’s about stories shared over dinner tables, and
love letters whispered over deathbeds.
42 They devoted themselves to the apostles’ teaching and to fellowship, to the
breaking of bread and to prayer. 43 Everyone was filled with awe at the many
wonders and signs performed by the apostles. 44 All the believers were together
and had everything in common. 45 They sold property and possessions to give to
anyone who had need. 46 Every day they continued to meet together in the temple
courts. They broke bread in their homes and ate together with glad and sincere
hearts, 47 praising God and enjoying the favour of all the people. And the Lord
added to their number daily those who were being saved.
‘Seeing a sign on ManchesterTown Hall saying that it reopens in
2024, I wonder if I’ll still be here to see it. At an event last year at the Christie, I chose
‘Unsettling’ as the one word to summarise my experience with cancer, with spinal
scans underway. Secondary cancer is often underfunded, so metastatic cancer offers
fears of a foreshortened life.Within our culture we’re not very good at engaging with
death. Andrew Graystone, who’s also been through cancer, said at Greenbelt Festival,
‘I am going to die as many times as the rest of you: once’. Kathryn Mannix’s recent
book With the end in mind, encourages us to think about death as the end of
uncertainty: if we know what we want our legacy to be, then we can get on with the
business of living with a purpose.’ Bex Lewis
Kindness can be silence,
Admitting tears and fears.
Let me be as I must be.
Ends are sometimes
• Kernels of hope
Are waiting -
Learning what might be,
Embracing what is.
#KALE Poems from @RoxNicholl
• Keep on keeping on.
Always look in the bright
Love conquers all.
Everyone has a cliché.
Keep your mealy words
And trite proverbs.
Let me feel this ...
Everything does not happen
for a reason.
‘I have found social media essential for my wellbeing through 2+ years of
treatment, including being able to share information ‘once’ via blogs/social
media (rather than having that cancer conversation over and over again),
and being able to access lots of useful information which there’s no time for
in medical consultations, or ‘just in time’ information when I’m wide awake
at 3am with some horrible side effect. There is also a lot of fun to be had with
a group who gets where you are coming for, and tells you about the extra
things you can access – from benefits to ‘Look Good Feel Better’.’ Bex Lewis
‘Theological values of “interdependence and openness to
others,” however, encourages sharing which enables users to
see some acts of surveillance “as a good and necessary act of
care.”Yngvesson (Lewis 2017c) notes that where surveillance is
used as a bridging mechanism, this creates a healthy
community, whilst when used in a demanding and exclusive
way, it becomes unhealthy.’
Lewis, Bex. 2018. Social Media, Peer Surveillance, Spiritual Formation, and Mission: PractisingChristian Faith
in a Surveilled Public Space. Surveillance & Society 16(4): 517-532.
A MESSAGE TO THE CHRISTIAN CHURCH
‘I really enjoyed reading this book on both a personal and
professional level - yes, it's not perfect (what is?) - and I
had a few quibbles with the sense that face-to-face is still
the ULTIMATE to aim for, but the author works with
young adults, researches faith and digital, and has Stage
IV cancer - so lots of helpful overlaps. Well written and
based within theology to illustrate that church has always
had a 'virtual' dimension, from Paul's letters to the early
church, and it's about understanding the strong and weak
ties that hold us together, and how digital can be critically
investigated.’ Bex Lewis, GoodReads