Passionart has a new project for this year, focusing on the theme of ‘Belonging’:
We are using the theme of BELONGING as a way to consider a number of issues related to social justice. (I.e. diversity, gender, poverty, mental health, homelessness, refugees and many more) Working alongside graphic word artist Micah Purnell we aim to generate some creative responses for the project that can be used to grow a city wide conversation around the theme of Belonging. To begin our research we would like to invite a number of people from a variety of backgrounds and contexts to tell us what belonging means to them.
I wanted to write a piece for this, and my piece starts:
Over the past few years, one of the places that I have felt that I am able to truly belong is online, on my blog, and on social media. It’s a space in which my voice has found expression, a space in which I feel free to be seen, acknowledged and accepted as myself. Read the whole article.
This piece was written at a similar time to my Lent reflection for Radio 4, so there a couple of minor overlaps, but very much a piece on its own.
This evening, my Lent Talk for BBC Radio 4 has been broadcast. The script I read from was as follows:
I’m just posting a picture onto my Instagram feed, and as I have done several times over the past year or so, tagged it with #waitingroomfeet. As you might guess, this is a picture of my feet, in a waiting room – typically a hospital waiting room. In most of the waiting rooms that I’m in, I know that the majority of other people in this room have been affected by cancer, as I have, and I don’t want to breach their privacy in unwittingly capturing them on camera. I don’t know their individual stories or their prognoses, although I suspect they share many of my hopes and fears as we wait to see the surgeon, the oncologist, the radiologist, or any of the other myriad (of) specialists attempting to control the cancer that is seeking to take over our bodies.
Diagnosed with breast cancer in August 2017, and again with metastatic spinal cancer in January 2019, I am at once bored by the tedium of constant appointments, and a myriad of side-effects from the treatment – few of which really warrant complaints on their own. I am exhausted from the constant uncertainty of being involved in ‘the cancer journey’ – although I’d describe it more as a treadmill, and you’re not sure when the speed is going to ramp itself up! Another metaphor that occurs frequently, is that I feel as if I’ve been caught in the surf, as the waves pull backwards and forwards, and just as I thought I might be able to get onto the beach, along comes more bad news, and drags me back into the treatment maelstrom.
My mission on earth may not be as significant as Jesus’, but I see parallels with the Garden of Gethsemane in this cancer ‘journey’, especially as news of each diagnosis sinks in, and I want to rage against the cancer and all that it seems to threaten to take from me. As the gospel of Luke puts it, Jesus prayed to God: “Father, if you are willing, please take this cup of suffering away from me. Yet I want your will to be done, not mine.” Some wonder if Jesus, as God, knew what was to come for him and therefore it ‘was easy’. Fully human, however, in his incarnation, he surely knew that he was to face not only physical torture, but spiritual and emotional challenges as he was separated from God.
I remember back to waiting for the first appointment at the hospital, when I nervously sat down, unsure what was happening, but thinking that I was too young, and with the reassurances from the GP that 90% of the time it’s “just a cyst, but we should check anyway”. I now know that in 2016, nearly 5000 women under 45, as I am, were diagnosed with breast cancer, and the Younger Breast Cancer Network I’m in on Facebook has over 3,000 members, with around 350 of us in the ‘inoperable/secondaries’ subgroup. I left the hospital several hours later, having undergone a physical examination, mammogram, and an ultrasound, with the words “suspicious looking cells” ringing in my ears. Confirmed the following week, I had my first experience of the significance of ‘the chairs’ (it doesn’t take three people to sit down to give you good news), and started to become familiar with what cancer patients know as “scanxiety”: the uncertainty that comes with waiting for scan results, and what that might mean for your life. As Gillian Straine writes in Cancer: A Pilgrim Companion, we have entered the ‘wilderness of cancer’ and ‘there is no security in home, or work, or routine, because cancer threatens it all’.
In an endorsement for Gillian’s book, Jenny Baker (author of Run For Your Life: How One Woman Ran Circles Around Breast Cancer) describes the sense of being thrown into a new world, with unknown rules, and no map to find your way through. As cancer patients, however, we have to get up to speed quickly, because treatment happens fast. At many stages throughout my cancer ‘experience’ I have felt unsettled, exhausted, and restless as the exact nature of the tumour is tested, examined and diagnosed, to determine the right treatment. Younger women typically have more aggressive cancers, so everything gets thrown at it: I was in surgery for a mastectomy three weeks after diagnosis, to be followed by 18 weeks of chemotherapy (with accompanying nausea), and 3 weeks of radiotherapy (with accompanying fatigue).
With the most recent diagnosis, I took comfort from Jesus’ experience. I took time to grieve and struggle with what was happening in my body, but eventually my mind surfaces, prepared to face the difficulties ahead. Both diagnoses have, in some ways, come as a form of relief, because at least ‘we have a plan’. Clearly I would much rather not have cancer, nor have to deal with the uncertainty of what may be coming with each new treatment. Even the oncologists can’t predict exactly how each individual will respond to the treatments. As I sign consent forms, with the first potential side effect often listed as death, I am actually often following a well-trodden path. The standard phrase I heard before I started my treatment for primary cancer, was something along the lines of ‘the treatment is rubbish, but it’s doable’, involving the physical trauma of the knife, toxic chemotherapy drugs, and potential radiation burns… and will my veins allow a cannula to be inserted? Choosing to have a mastectomy felt very easy, choosing whether to try and preserve my hair with the cold cap felt like a ridiculously big emotional decision, affecting a visible marker of my identity!
Much of the thinking for this piece was done on World Cancer Day (4 February each year). Under two years ago I knew very little about cancer, and didn’t realise how many people are ‘living with and beyond’ cancer. At present some estimate that 1 in every 2 will get cancer at some point in their life, although as Susan Sontag wrote in Illness as Metaphor, in the 19th century, tuberculosis held the same fear that cancer now does, until it became totally curable. New treatments are constantly being developed: one of mine was only made available four months ago. A recent ‘You, Me and the Big C’ podcast focused on ‘hope’, and the new treatments being developed, and I thank God for those medical staff with skill, expertise persistence, and vision. Whilst medical staff are wary about us spending too much time with ‘Dr Google’, or becoming panicked by statistics, media representations do not always help. Headlines may be improving, but are often accompanied by images of bald and frail people looking close to death in a hospital bed. Those representations are part of what I have sought to challenge by sharing my cancer experience via blogs and social media, which also enables me to keep friends and family informed, and to ask for practical help – and that reminds me, that like the grace I believe we experience from Jesus – I have accepted time, gifts, and support from others at a level that I can never help to repay, though I hope to be able to pay (some of) it forward. Through my work, I have always encouraged people to share the realities of their life, mixing vulnerability with wisdom, employing hashtags such as #InstaImperfect. For public online conversations, I can now hashtag my shares with #BusyLivingWithMets or #WhatCancerLooksLike.
Cancer treatment requires a huge amount of flexibility, the body can react in unexpected ways, and the machinery can break down. As Gillian Straine writes, cancer is a journey defined by ‘loss, uncertainty, and fear’: our life shrinks to focus upon healing the body, handing it over to the experts. Despite following Tanya Marlow and her work on God and suffering, we don’t fully understand the difficulties until we undergo them. On social media, I’m able to join private conversations with others, some of whom are ahead and able to give advice; others who are alongside with whom I can share experiences, and others coming behind whom I can help. Within these groups I know that I’ve found a tribe of people who understand, and this helps manage worries about what is concerning, and what is seen as ‘normal’. Whilst such camaraderie is powerful and encouraging, the obvious drawback of being in such groups is encapsulated in the fact that on the day of my first chemo, it was the funeral of one of my new friends. The uncertainty of whether the cancer might return or progress, can make it challenging to watch others experiencing this! There is space, however, for the very black sense of humour that many cancer patients develop!
As we see, cancer impacts our identity, both individually and communally. When I was first diagnosed with cancer, I felt that I was a strong, independent woman. I was right in the middle of planning for a new term of teaching at Manchester Metropolitan University, I had public speaking engagements in planning, and all of this had to go on the shelf. Suddenly I was no longer ‘Bex’, with the name ‘Rebecca Lewis’ called out in waiting rooms. For me, the knowledge that Jesus is alongside us, offering hope in the darkest of places, can at times feel very academic, at other times gives hope. Last year, reading Day by Day with God, the author Rev Dr Sara Batts suggested reading the Psalms of lament, including Psalm 22, where ‘My God, my God, why have you forsaken me?’ echoes the abandonment that Jesus felt. I am very aware of the prayers of others, as it can be difficult at times to pray on my own behalf. When Jesus went to pray in the Garden of Gethsemane, he felt alone, abandoned and vulnerable. His disciples, and our friends, don’t always know what to do for the best! Cancer can feel very lonely, especially when your immune system is compromised, and friends who have contracted viruses are unable to make their promised visits.
Psychologist Peter Harvey, in ‘After the Treatment Finishes’ talks about learning to live when the treatment has made you feel worse than the cancer itself. As my counsellor said, ‘you couldn’t plan for cancer, yet here you are’. Cancer has affected my fertility (I was put through the menopause in eight weeks), my finances (although I’ve kept my main job, I waver between making the most of living, and preparing in case my health deteriorates), and my friendships (some positively, some negatively – noting I would rather people said the wrong thing to me, than nothing at all). For my faith, some days it feels stronger, holding on in the face of uncertainty and doubt, other times I struggle with very human fears and frustrations: I’m learning to work within the limitations of my body, and a restless lack of control over life has evidenced itself in ‘nesting’: decluttering and decorating my house.
Seeing a sign on Manchester Town 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.
I have long described myself on social media as a ‘life explorer’, and I have in many ways been given another chance at life, to think about what I value, and how I want to make a difference in the world. I am re-learning to find ‘joy in the ordinary’, taking it one day, and one appointment at a time, recognising that although I am forever changed by my cancer, I am not defined by it.
Parapharasing a line from the Gospel of Matthew: ‘Tomorrow is never promised. Do not worry’.
I have just returned from recording for the BBC Radio 4 Lent Talks, with my episode to be broadcast 27th March 2019 at 8.45pm (when I will link to iPlayer, and post up my script – although note we changed a few words as we recorded).
I’m just posting a picture onto my Instagram feed, and as I have done several times over the past year or so, tagged it with #waitingroomfeet. As you might guess, this is a picture of my feet, in a waiting room – typically a hospital waiting room. In most of the waiting rooms that I’m in, I know that the majority of other people in this room have been affected by cancer, as I have, and I don’t want to breach their privacy in unwittingly capturing them on camera. I don’t know their individual stories or their prognoses, although I suspect they share many of my hopes and fears as we wait to see the surgeon, the oncologist, the radiologist, or any of the other myriad (of) specialists attempting to control the cancer that is seeking to take over our bodies.
The official introduction for the series is:
This year’s Lent Talks explore the theme of uncertainty through the stories of key figures in the Passion narrative. How do their trials relate to contemporary life? The six speakers reflect on these characters from a personal or professional perspective. Psychotherapist Mark Vernon argues that Doubting Thomas has much to teach us about the value of uncertainty in our lives, even though it is something we might instinctively try to avoid; psychologist Sandi Mann, explores the parallels between Peter’s denial of Jesus and the lies we tell each other every day; author Bex Lewis draws on Jesus’ Agony in the Garden of Gethsemane as she describes her experience of being diagnosed with cancer; retired High Court judge, Sir Paul Coleridge uses the example of Pontius Pilate to examine the moral conflict in the minds of those responsible for administering justice; theologian Candida Moss considers the questions surrounding Judas’ motives and what they say about the demonization of others and the complexity of betrayal; and finally, Alison Cope, whose son Joshua was stabbed to death, reflects on the grief of Mary standing at the foot of the cross.
Read full blog post about why I am not a fan of giving up social media for Lent, or regarding it as a ‘waste of time’, when it’s a strong tool for building relationships.
<edit – November 2018 – the blog post appears to have been taken down, so content reproduced here):
I wrote a piece for Christian Today last week, which reflected that according to OpenBible, social networking is the number one thing that people tweeted that they were giving up for Lent! For many, this reflects the negative perception of social media that persists: that it causes us to disconnect from those around us, and that we have become ‘slaves to machines’. Some feel that they are simply reflecting upon habits that have become ‘all-consuming’, but this assumes that time online is time wasted. Abandoning social media feels less helpful than adjusting and experimenting with our interaction with it: our mobile devices and social media are embedded parts of our everyday lives, and places that we connect with ‘real people’. It is right to question if we are using them healthily, but disconnecting entirely can make life poorer both for those who give it up, and those who connect with them online.
There are so many possibilities for the church to engage online, to see it as a space with real potential for connection, especially in seeking to equip members of the church to speak out with confidence about their own faith experiences. There are many aspects of the digital in which it is easy to experiment, to try things that are low cost financially and reputationally, and for which the rewards in community engagement, local and international, are potentially powerful. We live in a culture which has become obsessed with efficiency, with getting things right, with wringing the last economic drop out of every penny, without regard for other costs.
How can the church be a leading light within our society, if we are seen as irrelevant, refusing to engage with the latest technology? Can we lead by example, and show that we are not afraid to experiment, not afraid to fail? If we’re not in the digital spaces, the latest ‘public square’, then we can’t offer an ‘example’ to influence the wider world. We need to be part of people’s everyday conversations, and not just arriving when we have a message to ‘sell’. Sharing our everyday lives, in which stories of humour and vulnerability are particularly powerful, allows us to connect – including with journalists, who find spaces such as Twitter a useful hunting ground for stories, and to build up trusted relationships with potential contributors to stories.
A number of platforms have offered a range of ways to get involved in Lent, from the Big Read that I ran 2010-2014, in which we sought to break ecumenical boundaries by encouraging ‘bigger Bible conversations’, to the multi-award winning 40 Acts, to the email series I am reading via Brain Draper, to options to share a picture each day from The Bible Society, to listen to 40 voices from the Diocese of Canterbury, whilst there are Facebook book reading groups, support groups for those decluttering for 40 days, and all kinds of other opportunities, the large majority small groups who have self-organised.
The digital age has brought with it a desire for personalisation, and a recognition that one size does not fit all. Whilst being wary of commercialisation, the digital gives us the ability to encounter the richness of many great theological minds which we would have had no access to before, allowing challenges from those of us who are ‘everyday theologians’ with a hunger for connection, for spiritual development, and for theological knowledge, as we learn that God loves us as we are.
The digital allows us to read on the move, we can access the Bible in many translations for free, use apps to manage our prayers, can move beyond our geographical limitations, whilst also enriching our communities through the ‘hyper-local’. Social media often brings small glimpses of theology into our everyday lives, through the people we connect with, and the content we encounter. Much of that content has become increasingly visual, particularly on platforms such as Instagram and Snapchat, both incredibly popular with teenagers. We need to be present to participate in conversations, demonstrating that we have something to say about the smaller aspects of life, means that we can demonstrate the relevancy of a faithful life, and may even be asked to comment on our lives, our faith, and the organisations we represent.
