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ss triple helix - winter 2023,  life in the valley

life in the valley

James Lawton recounts his walk through the darkest valley as he waited for a liver a transplant.

Even though I walk through the darkest valley, I will fear no evil, for you are with me;
your rod and your staff, they comfort me.

Psalm 23:4

This is the verse a friend shared with me a short while before my second liver transplant assessment that led to me being added to the liver transplant waiting list. He's someone who has had more than his fair share of dark valleys and walked paths I'll never know or understand. If this was what he clung to, then it could be what I would cling to also.

To be honest, for the first 40 years of my life I would say that I 'occasionally walked through some slightly shaded areas'. Not so much valleys. Not too dark really in the grand scheme of things. Psalm 23 had always been more about finding that quiet, peaceful place to sit with Jesus when life was busy and I needed a breather. But in 2019, as good health suddenly gave way to liver cirrhosis, and 'might one day need a transplant' became 'will need a transplant', the green pastures began to fade, and it was time to face the valley.

waiting and trusting God

Darkness is an accurate picture of how I (and we) felt when I was first referred for transplant assessment. I was fatigued and already needing to take naps every day. It felt like I became yellower and yellower each day. Nothing felt sure or certain any more. The road ahead was completely unknown, completely invisible, absolutely petrifying. And what if there was no road ahead? What if our family of five became a family of four and the kids had to grow up without me? We were told by the transplant team that it was important to get our financial affairs in order. Bex and I made wills. My thirties had very much been a time of questioning what I believed, questioning who God was, and living with a mix of faith and doubt. As I contemplated my mortality, I had to fight the thought that maybe God was disappointed in my lack of faith. So maybe this was my time to go and then Bex would find a better Christian husband.

In church I've often heard people say things like 'I'm trusting God for your new job' or 'I'm trusting God that the next one will be Miss Right'. And, as someone living with a chronic illness in a charismatic church community, there's often 'I'm trusting God for your healing'. The problem I found with this is that God doesn't always do these things. And if God doesn't do the things that we're trusting him for, then does that make him untrustworthy? I decided that, for me, to trust God in the valley meant trusting in who he is and not what he would do. I chose to trust that he would be with me and that, whatever happened, he would use it for some good. I had to keep coming back to this, to keep trusting that God would make something beautiful out of this journey, wherever it led.

waiting with uncertainty

I was not added to the liver transplant wating list after my assessment in 2019. Just before the assessment, my bloods began to improve and continued to do so until they returned to near normal levels by the end of the year. I don't pretend to understand this. Some of my Christian friends will say that God stepped in and did a miracle. The doctor who carried out my ERCP would suggest that they had stretched something and that it could have helped clear things. Others I know with the same disease have said that this happens sometimes and often with no clear explanation. What I do know is that it meant that I was well from January 2020 until December 2021 - a period that covered the worst of the Covid pandemic. Knowing the impact that Covid had on the number of transplants carried out, I will always be thankful to God for my improved health during this time and mourn for those lost during those dark days. Living with uncertainty, though, was excruciating for us. When we found out I was not going on the list I breathed a huge sigh of relief, as a devastated Bex broke down in tears. In the darkness, how do you know if a change of direction is good or bad? How do you plan anything when everything can change overnight? How do you carry on making packed lunches, going to work, doing the school run, when your mind is distracted by blood tests and hospital appointments?

waiting for the call

On Christmas Eve 2021, I first noticed some fatigue creeping back in, and Bex spotted the slight yellowing of my skin and eyes. Blood tests confirmed my liver was struggling again and a second transplant assessment ended with me being added to the waiting list at the start of March 2022. Waiting was something I should have been well prepared for as I had oodles of experience of having to wait for a child to get their shoes on. Unsurprisingly, waiting for the call to go for transplant is a very different experience to that of dealing with the child who saw fit to file their shoe in the freezer! Every night, as I remembered not to put my phone on silent, I would wonder whether the call would come that night. I knew that that call was the only key that could unlock a brighter tomorrow, but there was a huge trepidation about having to walk through that door. After three months on the waiting list, I got my first call. It came in early June, just a few days after I had been admitted to hospital, with blood tests showing a rapid deterioration in my liver. A positive Covid test would thwart my chances of a transplant that day and, 18 days later, I would miss out again when the liver I had been offered was reassigned to a more urgent case.

It was my third call, early in July, when my transplant operation went ahead. If the first few months of waiting had been tough, the last month became more and more unbearable. I itched all over and couldn't help but scratch and scratch until I bled. My energy levels were so low I struggled to make it up the stairs. How long could my body keep going? Through the tears, I pleaded with God for the call to come. I don't know what it should look like to be full of faith as you see and feel yourself fading away but, for me, it was just about choosing each day to keep walking through that valley and putting my hand in the hand of the one I had trusted in as a boy all those years ago.

the other side of the valley

Without a doubt the hardest days were the week spent in ICU after my operation. Having tested positive for Covid again after the transplant, I could not have any visitors. My first real memory post-op was of not being allowed more than a few drops of water at a time, whilst also being given free rein to pump myself full of opioids. This seemed odd but I wasn't going to say anything for fear of losing my precious fentanyl button!

ICU was when my 'Liver on a Prayer' WhatsApp group came into its own. For many months this group of 100 or so friends, mostly Christian but some other religious and non-religious friends, had walked with me and prayed for me. Now I needed them to carry me. Sat alone in ICU on day one, I sent them a very faint voice message - 'Boom, I did it'. They celebrated with me! When my lazy kidneys refused to kick into gear, they prayed for me. When my bowels weren't opening, they prayed. When the laxatives then did far more than I could ever ask or imagine, they prayed. And when I sent a voice message sobbing and at the end of myself, they prayed. In practical ways and through prayer and just by being there and loving us, this group made the journey that bit easier for us. I'm sure I will continue to find frustrations with the church as an organisation, but I've seen the church as a body acting in love in an amazing way and will always treasure it.

I cannot begin to express how thankful I am to Jesus that he brought me out of the valley. I got to enjoy the new dawn I so desperately longed for. In the valley, I felt the shadow of death lurking. I felt blind in the darkness, scared, helpless, and devastated, knowing Bex and the kids had no choice but to walk the valley too. But from my weakest moments, I now have a deeper trust in God and gratitude for life, and I have faith that God will continue to bring good out of all we went through.

James Lawton is a software developer based in Oxford and married to Bex Lawton

1. Philippians 4:11
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