All about my walk for VHL in memory of my brother Andy
I am a 39 year old (for a few more weeks!) vicar in Leicester. My brother Andy Lees died in 2013 aged 38 just three months after my father. They both suffered from Von Hippel Lindau syndrome, a genetic form of cancer. This May I am walking Hadrian's Wall to raise money for VHL UK/Ireland.
Tonight we went for a wonderful meal out on Mount Washington with fantastic views over the city of Pittsburgh. The restaurant was a superb fish grotto with windows all round so we could enjoy the views while we ate and listened to some great jazz.
Back home the Vicarage walls are currently resounding to the melody from Abba’s ‘Thank you for the music’ along with Verdi’s ‘Anvil Chorus’. My youngest daughter Hilary is practising for her Grade 2 Trumpet and in the process giving us all earworms that we can’t escape even in our sleep!
The Anvil Chorus is a great piece of music though (not that Abba isn’t!) and comes from an opera called ‘Il Trovatore’ meaning ‘The Troubadour’. Troubadours came up in conversation this morning as someone was talking about the work of consultants to churches.
Just as troubadours pick up songs from the places they visit and sing them in new places, so consultants have the task of collecting and sharing stories of what is going on in other places.
Today on the conference we’ve been thinking a lot about racial segregation and I’ve been massively challenged to face up to and address my own bias and assumptions as a middle-class middle-aged white man. I need to listen more carefully to the troubadours in my community who can sing me the songs of other places and tell the stories of people who are not like me.
Then I need to take more seriously the call to be a troubadour and sing those songs to others so that they too can hear the voices we don’t often hear. As I am being led to give more thought here to the kind of research I might like to do at some point in the hopefully not too distant future, helping the church to hear the voices of those in the pews and in our communities feels like a good and fruitful thing to try to do. And in doing so, new ideas might emerge and together maybe we can begin to create some new harmonies from the different melodies.
Now that would be an earworm I wouldn’t complain about!
I have a hole in my socks but no needle or thread to darn them!
I don’t know if I’ve worn through my socks because I’ve been doing a lot more walking here in Pittsburgh than I expected. It’s been said many times before by visitors to the United States but everything here just seems so big! The streets are wider, the houses are bigger and the buildings are taller. A few blocks seems like miles to walk.
But it’s not all bad. Flying into Pittsburgh I was struck by the huge number of trees I could see across the city. They were everywhere between the houses and other buildings making it a much greener place than I would have expected of an industrial city. At times it looked like the trees were fighting with the houses for space and more often than not the natural world was winning.
After a full day of presentations and discussions it was good to head downtown this evening to find food and fresh air. A walk along the river revealed more trees along the riverbank even right in the centre of the city, contrasting with the great steel bridges, one of which proudly sported an award for ‘Most Beautiful Bridge 1928’!
I am still processing all the things I am learning and discovering as I listen to the experiences of church leaders encouraging fresh pioneering models of church in Pittsburgh and other parts of America, as well as in South Africa and Europe. One of the most interesting definitions for mission that I have heard was quoted in a presentation this morning. It comes from Craig Nessan who writes that God’s mission through Christ and the Church is to ‘mend the torn fabric of creation.’
It’s a wonderful image to play with, an image of healing and reconciliation. The Church is called to engage with what God is doing in the world, to see where the fabric of creation is torn and to do what we can to mend it, to work in partnership with the ‘other’ whether that be the created world or other human beings from a different faith or background. I have also been struck today by painful stories of racial division and prejudice which continue to blight so many communities.
Sometimes taking on this mission might mean repairing breaches within the local congregation or community, sometimes it might mean being prepared to work with those who are different from us in creating something new that will allow us all to flourish.
In this disposable age, I suspect I will just throw my socks away and buy new ones but that’s not an option when it comes to creation. The tears in the fabric of our world need repairing and that requires both needle and thread, not to mention a whole lot of skill and patience.
This song by MercyMe was the one I chose for us to come in to at Andy’s funeral. It’s a song I came across at a funeral I did some years back for a wonderful and dearly loved man at the church where I was a curate. Here are some of the lyrics. Hopefully you can see why I chose it …
You’re in a better place, I’ve heard a thousand times
And at least a thousand times I’ve rejoiced for you
But the reason why I’m broken, the reason why I cry
Is how long must I wait to be with you
I close my eyes and I see your face
If home’s where my heart is then I’m out of place
Lord, won’t you give me strength to make it through somehow
I’ve never been more homesick than now
Help me Lord cause I don’t understand your ways
The reason why I wonder if I’ll ever know
But, even if you showed me, the hurt would be the same
Cause I’m still here so far away from home
I close my eyes and I see your face
If home’s where my heart is then I’m out of place
Lord, won’t you give me strength to make it through somehow
I’ve never been more homesick than now
I’m not feeling especially homesick here in Pittsburgh as I’ve been very busy, although speaking to the family on FaceTime earlier this afternoon did leave me feeling a little sad. But I have been thinking about home because the theme of the conference is ‘God in the Neighbourhood’. We were asked to think about where our home is.
For the first 11 years of my life, I lived in at least seven different places in the UK. I’ve always found it hard to say where I come from. I spent the longest time in Leicestershire, that’s what I usually end up saying. But increasingly I have found myself happy to answer that I come from Leicester. That is my home at the moment (leaving aside discussion of my heavenly home for now!). And I do feel a long way from it here in the USA. However, it has been fascinating to discover so much that is common in the experiences of colleagues here from Denmark, Norway, South Africa and of course America itself. Many of our churches are experiencing the same trends and so sharing our responses to the changes we are seeing in the world is exciting and stimulating a lot of thinking for me.
The idea of ‘home’ is really important to us as human beings, and if we are feeling homesick, I believe it’s true if a little simplistic that ‘our hearts are restless until they find their rest in you’ as St Augustine said. It can be hard as itinerant clergy to minister to a congregation who have never lived anywhere else. Their sense of rootedness and place is stronger than we will ever know. And yet, as the world becomes an ever smaller place, that also means perhaps that we should be able to feel at home wherever we are in it.
In one of today’s presentations I learnt of the sociologist Hartmut Rosa who writes about our need for ‘resonance in a world of acceleration’. Where in our neighbourhoods can we help people to find resonance that might offer a cure for that feeling of loss and unease we sometimes call homesickness?
It’s been a long day. I’ve already been up for nearly 24 hours, having left home in a taxi at 3am! From there to the bus station to the airport and across the Atlantic to Philadelphia where thunderstorms have delayed all onward flights. So an anxious time of waiting once again …
But my anxiety is as nothing compared to that felt within the community at Finsbury Park and in muslim communities all over the country after last night’s terrible attack. My heart goes out to my own community in Evington and the many families I know through the local school who will be feeling increasingly threatened and unsettled by these events. We live in anxious times.
I haven’t been to the United States since I was 17 and haven’t flown much at all in the intervening years, certainly not long haul. So I admit today has been a nerve-racking experience. I wasn’t really expecting to have to strip off jacket, shoes, belt and empty pockets, to be swabbed because of my insulin pump and to be questioned a number of times about the purpose of my visit. I have felt under close scrutiny and that feeling has been added to by the numerous signs encouraging people to report suspicious behaviour, not unlike some of the wartime posters that led to increased suspicion between neighbours and a generally mistrusting atmosphere.
All of this makes for an interesting background to the conference I have come to take part in, looking at how the church can engage better with the local neighbourhood, seeking transformation and the common good. I felt prompted by some of the comments I have read from muslim friends to write to the trustees of my local mosque back home and offer them some reassurance of our continuing desire as Christians to work together for the wellbeing of all.
These may be anxious times, but time and again the Bible tells us not to be afraid. The way to dissipate the anxiety is not by giving way to fear and withdrawing more into our homogenous communities. Instead we need to be drawn by hope and love, to be reaching out in friendship to our neighbours to offer one another reassurance that we have more in common than what divides us. I love this CBBC video.
Children are wonderfully blind to the barriers we put up as adults, and it echoes one of my favourite quotes from Nadia Bolz-Weber: ‘every time we draw a line between us and others, Jesus is always on the other side.’
Father’s Day has been a bit weird since Dad died. I walk past the displays of Father’s Day merchandise each year and think I have no one to buy it for. I’m spoilt of course by my lovely daughters and for that I’m eternally grateful but it’s odd not to be giving as well as receiving.
This Father’s Day has been different as I was privileged to preach in my Dad’s church in Wisbech. It was a very moving experience and many people in that congregation too who knew my dad have given generously to VHL and followed my walk4andy.
After lunch with my stepmother and my dad’s brother and his wife we went to visit my dad’s grave in Newton where my dad’s dad is also buried as well as my dad’s dad’s dad and I think my dad’s dad’s dad’s dad!
It was boiling hot and so finding some shade was the number one priority but I was struck gazing at the gravestones by the passing of time and the knowledge that I am just one more dad in that whole sequence, a product of many fathers with all sorts of different approaches to fatherhood.
Largely because of the VHL, my dad wasn’t in a position to father me like I have my girls. Certainly after his first major op, he couldn’t take us out on trips or just muck about in the garden. I don’t blame him for that of course. He was still an inspiration in so many other ways and I knew he loved me. That, for me, is the most important gift a father can give – the knowledge that you are loved unconditionally…
I know he would have been very proud of me today standing in the pulpit at his own church, and I can even be pretty sure (since I’m told by my children I’ve inherited his terrible sense of humour!) that he at least would have chuckled at my joke about Jesus’ bowels being moved!!
Waiting is hard, but it is one experience that is shared by everyone who at some point has to have something done in hospital.
This week my wife was due to have an operation. Having waited for the appointment to come through (actually much sooner than we’d expected!), she then had to wait for the day to arrive, and finally sit in her very attractive nightgown and hospital pants waiting for the doctor to come and tell her when she would be going down to theatre.
After all this waiting, it was then very frustrating to be told that her operation had been cancelled and she would have to go home and wait some more for another date to come through! Argh!
But for people like Andy with VHL, this isn’t just a common experience, it’s normal life. Every day there seemed to be an appointment or procedure or something VHL-related that he had to attend. There were kidney-specialists and brain-specialists and eye-specialists, then there were the genetics specialists and, as he became more disabled, the occupational health teams and physiotherapists. There were speech therapists and district nurses, community health visitors and so it went on. If it was all added up, he must have spent days, weeks, even months of his life waiting in hospitals! An endless round of health-related appointments filled his diary and his life revolved around them, always waiting for the next one to come through.
None of us like to be kept waiting, but I remember at the end of my first day on the walk4andy having to wait for my lift back to Carlisle. It was a boiling hot day. My phone had died. The church in Burgh-by-Sands was locked and so I couldn’t fill my time with having a look around. Instead I took off my boots and sat on the wall in the shade. I probably sat there for the best part of an hour or more. It was liberating actually not being able to do anything and I was struck by the creeping feeling of contentment which had grown on me as I walked alone across the marshes. There was nothing I could do but wait.
I’m not very good at waiting but maybe I can learn. Andy always seemed quite relaxed about having a diary full of waiting time. Perhaps he learnt to live in those moments rather than always feeling that they were taking him away from something more important. Perhaps what I need to learn is that this moment, this time, is what matters, and we don’t have to wait to make the most of it.
‘In our own woundedness, we can become a source of life for others.’ The words of Henri Nouwen in his book ‘The Wounded Healer’.
In the aftermath of election night, amid the many voices trying to make sense of what has happened, I heard someone comment that the electorate would have been more forgiving of Theresa May if she had just admitted she made a mistake over the so-called ‘dementia tax’. Easier said than done. Few of us find it comes naturally to make ourselves vulnerable in that way, to be open about our mistakes, our failings, our wounds, especially when we are in a privileged position of power.
When I set off on my walk4andy, I had a number of goals. First and foremost I wanted to raise the profile of VHL and raise funds for research and support for families living with it. Second, I wanted to do something memorable in Andy’s memory, something I could point to and say ‘I did that for you, brother’. In doing so, I hoped that it would also help me work through my grief at losing both Andy and Dad so close together.
Thirdly, I wanted to give a kind of witness, a witness to my faith which has taken some battering in all this but is stronger than ever at the end of my journey. I also wanted to be a witness in the sense that I wanted to speak openly and honestly about my own struggles, in the hope that something of what I have been through might encourage or comfort others experiencing similar journeys.
Since I finished, I have been humbled by the number of people who have spoken to me and said that something in my blog had touched them or moved them or resonated for them or even helped them a little in their own walk with grief and God.
I know some people still regret the rise of the therapeutic age and the constant need to talk about our feelings but it really does help. The alternative is a myth that we are all just fine, thank you very much; the stiff upper lip that the English are renowned for. This creates a veneer of overcompetence hiding the real fear that many of us have that we are just one slip away from being found out – the ‘imposter phenomenon’.
It also generates a false belief that everything can be fixed. Even in church there have been times where I’ve felt forced to bounce up and down be jolly and happy and pretend that everything’s ok because Jesus loves us, when what I really want to say is more like ‘God, I feel crap right now, actually I’ve no idea if you’re even listening, I don’t understand why my life is such a mess, what have I done wrong and why don’t I feel happy like everybody else?’
I long to see a Christian community that can be honest about its weaknesses and failings, where you don’t have to be perfect to have a go at something, where those who appear very competent and confident can reveal their own woundedness to those who have been frightened to put their head above the parapet for fear of stepping on someone’s toes. This would be a community with space to grieve and cry and question as well as celebrate and praise and give thanks. After all, we find that whole range of emotions expressed in the psalms of the Bible.
Henri Nouwen writes, ‘A Christian community is a healing community not because wounds are cured and pains are alleviated, but because wounds and pains become openings or occasions for a new vision.’ It shouldn’t really be a surprise from a Christian point of view that the wounded make the best healers.
Andy knew all about wounds. He had plenty of them – staples, stitches, glue, all leaving their scars and bald patches. In the last few years of his life, Andy began to see how his suffering, his wounds, might be turned into a gift rather than a curse. (That’s not to say I believe for a moment that God wanted to cause him pain, any more than he wanted Jesus to die in agony on the cross, but I do believe that suffering and pain are never the end for God. They can be transformed by His grace into something new.)
In one of the last conversations I had with Andy he told me that he had begun thinking that maybe he had a calling to be a hospital chaplain, that maybe others might find hope and faith through him. From talking to people who knew him, I know that that was already happening, and, even as I share his story today, I’m sure that God is still at work through him, kindling hope and faith in a broken and wounded world.