Archdeacon Jane reflects on the complex and sometimes challenging relationship we have with our bodies.
I’ve been thinking about writing this for months and have been avoiding it because it deals with some really personal stuff. I want to share it because it might raise awareness of something really important, but I feel very vulnerable as I write because it’s personal. It strikes me that we often hide away when it come to talking about our bodies and what's happening with them. I'm not sure that we should. I want to stress that – I’m writing as myself, not representing anyone else or claiming that I have any experience or insight other that my own. So here goes….
Since the end of January I’ve been working on a new relationship – with myself! Let me explain. My surgery went well, a large tumour was removed from my colon, and to aid the healing of the re-section, the surgeon made the decision to create a stoma. It’s called an ileostomy and it involves bringing part of my small intestine to the surface of my stomach. This means that my digestion ends in a small bag that I wear externally and does not go into my large intestine at all. I change the bag every day, have to empty it around 5 times a day and live in fear that it might leak or fall off (rare but distressing when it happens). I was told by my stoma nurse that lots of people find that naming their stoma helps them accept it. The fictional bear created by AA Milne is a popular choice (I’ll leave you to figure that one out). I’ve named mine ‘Poppy’, because she’s popping out from my tummy and occasionally makes little ‘popping’ noises!
I was surprised to learn that around 200,000 people in the UK have a stoma, either an ileostomy or a colostomy, and for a variety of reasons. It can be following surgery for bowel cancer, due to severe endometritis, Crone’s disease or ulcerative colitis or maybe following accident or trauma to the bowel. For many people it’s life-changing in a really positive way, enabling them to be pain-free for the first time in many years. For others it’s really difficult to live with and a big adjustment.
It also took me by surprise that having a stoma is classed as a disability under the Equality Act 2010. The Act defines disability as having a ‘physical or mental impairment that has a substantial and long-term negative effect on a person's ability to do normal daily activities’. A stoma is classed as a ‘hidden disability’, as you wouldn’t know by looking at me that I have one. The stress of taking long journeys or worrying about getting stuck in a traffic jam, how I’ll manage social events, going out for a meal with friends, being hyper-aware of where the toilet is or even whether there is a toilet, how it might affect my working day etc. are all suddenly things I need to consider.
Classing a stoma as a disability means that there is protection and help and a responsibility on employers to make reasonable adjustments – all really good. However, I’ll admit that I’ve struggled with the idea of considering myself as having a disability. I may be fortunate enough to have the stoma reversed in time and so my hidden disability may also be temporary, while for so many their disability is permanent and life-long. I also find that I feel guilty ‘owning’ that delineation, as what I’m dealing with seems, to me personally, relatively minor compared to other people with disabilities.
Having a stoma has led to me learning a great deal more about the human digestive system. Having your insides working on the outside makes you a lot more aware of things that are normally hidden away. Lots about this is incredible and leaves me in awe at the design, complexity and beauty of our bodies. Yet, it has been challenging and has made me ask questions of myself and my understanding of my body. There have been moments of sadness, hilarity, surprise and frustration. Along with my cancer diagnosis, it’s also reminded me again that our bodies are not perfect, they do change over time, things go wrong, they can fail us and cause us pain and problems.
Wondering where to go with all this, I encounter Easter and, in my mind’s eye, see the risen Jesus standing before me. He holds out his hands, wounded and bleeding. I see the slash in his side, where the spear pierced him. I lower my eyes and there are his feet, bearing the ragged holes from the cruel nails. My contemplation of my own wounded and scarred body is intimately bound up in the pains and wounds that Jesus bore for me. His resurrection body, through which I am saved, bears the marks of what his earthly life did to him. In resurrection, those scars do not disappear, the wounds are still there. We are invited, like Thomas, to reach out and touch them and then to believe.
Paul in his letters refers to his own ‘thorn in the flesh’, a reminder for him not to boast, a reminder of his humanity and of God’s bountiful grace, "My grace is sufficient for you, for my power is made perfect in weakness." (2 Corinthians 12:9). Reading Paul also reminds me of how amazing it is that our bodies, in all their failings and with all their differences and peculiarities, are ‘temples of the Holy Spirit’, acceptable and made holy through Jesus’ incarnation. Paul writes; “Do you not know that your body is a temple of the Holy Spirit, who is in you, whom you have received from God? You are not your own; you were bought at a price. Therefore honour God with your body” (1 Corinthians 6:19-20).
This is for everyone who believes in Jesus, we are all blessed by the same Spirit and are dignified by it. Jesus, likening himself to the gate of the sheepfold, the protective good shepherd and the one whose recognisable and familiar voice calls to us, says; ‘The thief comes only to steal and kill and destroy. I came that they may have life, and have it abundantly.’ (John 10:10)
There are no caveats, no exceptions, no limits. Jesus knew, lived with and understood people in all their variety and diversity. He knew our bodies, embarrassing and holy, sleek and damaged, wonderfully and fearfully made. The thieves that steal and destroy that life are many and various – self-doubt, injustice, exclusion, shame, embarrassment, discrimination, frustration – the list goes on. Our abundant life comes from the indwelling of the Holy Spirit in us, from our unity and from the love that we have for God and for one another.
As I wait for Pentecost, I’m praying for the Holy Spirit to fall afresh on all of us. To once again enliven and empower us. To bring us together in unity and understanding, acceptance and compassion. To embolden us to share what we know of the love of Jesus, and the freedom and fullness of life that he died to secure for us. To open our lives to the amazing power and possibility of God’s working, removing guilt and shame, making us open and honest with one another. I’m praying for God’s blessing on each of you as together we seek to share that blessing with those who don't know it yet, one life at a time.