Living with ME, a chronic disease, ended up leading Mark to question his faith and then leave it. This is his journey.
Take yourself back to the mid-nineties, if you’re able to. We’re in a British Christian evangelical youth meeting, in a long white canvas tent on an agricultural showground a few miles North of the historic Cathedral city of Lincoln in the East of England. It smells of trampled grass and teen sweat. A sweet soaring guitar effect fills the air: ear candy to a couple of hundred entranced young people on a spiritual high. The sound will become a signature of the English Christian indie-pop band Delirious and be copied by worship guitarists the world over for decades. There’s something about that sound that engages the senses and unlocks the mystical.
We’re not here to talk about sweaty young people in bootcut jeans, Doc Martens, and logo-laden T-shirts though. In this tent, there’s a 15-year-old me, wasted muscles making me a bit overweight, and with ginger curtains, kneeling on a rough rope-woven floor with grass blades poking through the gaps.
I’m there in the metaphorical but vision-inducing river. Both cracked and dry but wet to the knees as the song ‘Find Me in the River’ somehow contradicts and makes perfect sense all at once.
This transcendent moment leads me to hear the voice of God.
Not some dulcet grandfatherly tones, gently sounding in my ear, but something more akin to my own thoughts. My own thoughts and yet so powerfully Other.
The Other told me that I’d be healed from ME (CFS), the condition that had ravaged the last five years of my life, meaning I’d missed most of my schooling, lost all my school friendships (because how many 90s adolescent boys would stay in contact with their friend who’s never at school?) and kept me as a hermit in the farmhouse where I grew up. Someone had prayed for healing over me earlier in the evening, like I’d been prayed for before so many times in the past. I’d always believed I’d be healed. This time, the Other said that I’d recover over the period of a year or two.
This was my healing testimony. This was the anchor of my faith for years to come. So many Bible verses and promises. God was to repay the years the locusts had eaten. I was to soar on wings like eagles. I was running and not growing weary because I trusted in God (or so Isaiah 40 told me). I even wrote to the band Delirious (who had gone on to sell millions of records) many years later and discovered that some years after that, my healing testimony was included in the book about the band by the lead singer.
At age 19, I went to Canada to a church-based Bible college/ministry training school. At 20, I got married. At 24, I went to university and got a first-class degree. At 27, I was a social worker and father. At 34, I was asked to voluntarily head up the worship team at church and took the responsibility seriously. At 36, twenty or so years after that night in the tent, all my luck ran out.
After a bout of flu in the autumn of 2017 my body cracked. I’d been pushing hard at life, working full time, condensing hours to collect my kids from school one day a week, supporting my wife while she completed a degree in a year, dealing with challenging divisive issues in the worship team and being given more responsibilities at work. I was walking more during work hours to get to meetings and trying to keep fit by going swimming in the late evening slot at the local pool. One cold January morning in 2018, I visited a foster carer to complete a supervision. Over the 90 minutes that I was there, I felt like I was coming down with something. ‘Please not now!’ I thought, ‘I have too much to do, payments to process!’ The visit was close to my home so I went back for my lunch break but found myself climbing into bed.
That was the end of a ten-year career.
ME (myalgic encephalomyelitis or chronic fatigue syndrome—CFS) is characterized by extreme fatigue, or post-exertional neuroimmune exhaustion—a pathological inability to produce sufficient energy on demand. Suddenly, I had very little energy to make food, look after the kids or even wash myself. I could just about walk across the road to buy a pizza to put in the oven for tea.
This felt like ME. I didn’t want to entertain the thought that it might be, but I didn’t have the flu or a cold, just the intense exhaustion, aching and sensitivity to light and sound. Over the following weeks, my condition deteriorated and new symptoms surfaced: pins and needles, numb hands and legs, my fingers going wrinkly after being in water for just a few seconds. I saw a neurologist privately and later had an MRI scan. I latched on to one of the better GPs at our surgery and even took up the offer of free counseling from my employers to make it look like I was doing something to help myself, even though I knew I was biding my time until all other options had been discounted and I could persuade my GP to finally give me an ME diagnosis and put me out of my misery.
And it was misery. I’d already lost six or seven years of my life to ME when I was young. I knew that young people are more likely to recover and that very few adults ever do. What scared me most was looking at a future where I couldn’t be the dad or husband I wanted to be. My sick pay was running out and we had some big decisions to make as a family.
We made the decision to sell our house and move back from the Midlands to my parent’s farm in the North East of England, living in a large caravan (trailer) for a year before moving into the main farmhouse next to my parents who live in a barn conversion. My wife had to oversee so much of the move while I felt disempowered in my inability to help. My health declined further to the point that some days I was unable to walk more than a few paces at a time and on my worst days I would find myself lying on the floor on the way to the toilet as my legs just gave way.
ME is really prevalent in society (around 250,000 people in the UK alone), yet so little has been progressed in terms of funding for research or any hope of a treatment. Certain parts of the medical field have been happy to keep ME within the field of psychology and psychiatry, when enough work has already been done to identify biological markers for the condition. Recommended treatment has been Graded Exercise (keep extending the amount of activity you can do each day, whether your body likes it or not—the absolute worst thing someone with ME can do) or Cognitive Behavioral Therapy (think yourself better). Both these “treatments” have now been discredited and are no longer recommended as ME treatments.
My ME played a significant part in my faith deconstruction. I had already been asking a lot of questions of my faith on specific issues. I realized that I had become a progressive Christian some time before I became ill. I had long since discarded any notion that it was a sin to be gay as a Christian and I was starting to feel uncomfortable heading up the worship team in a church that was not affirming (blessing LGBTQIA relationships). Maybe my cognitive dissonance (that is, conflicting views and attitudes in my mind) was becoming untenable.
After I became ill, I had to ask some heavy and very uncomfortable questions. The one at the top of my list was, “Why would God allow me to become ill with the condition he healed me from twenty years ago?” Then so many questions erupted. What about original sin? What about atonement? What about blood sacrifice? What about the biblical flood? What about the resurrection? I think the biggest question I had was about theodicy, or, the problem of evil and suffering: what explains all the suffering in light of an all-loving, -powerful, and -knowing God?
I wasn’t angry at God per se. Because I still held God as “sovereign” or above reproach, but why would God allow so much suffering if he could choose to stop it? How could God be onmibenevolent (all-loving) while allowing gratuitous suffering? I mean, God could heal me at any moment. So why hasn’t he?
Many Christians live in hope of that healing. Yet I found that, in my head, my feelings were that if God could heal me at any moment, it meant that God was actively choosing not to heal me. I was listening to a podcast where the issue of healing was discussed and someone used the analogy of pulling their young child away from a busy road. If my own 11-year-old son was walking towards a busy road, I would physically pull him away. Or if he was suffering with an illness, I would do everything in my power to relieve that suffering. I was a child of God—I had given so much of my life to God—and yet God seemed indifferent to my suffering when I believed he was powerful.
Again, my thought process was rational and process-driven. I could no longer accept the idea that this was to teach me something. If God is a god of pure love, why aren’t more people healed? And if people are healed, why does it happen in such a scattergun fashion without any significant evidence? Why has an amputee’s arm or leg never grown back? A random approach by God to answering prayer seemed almost cruel and indifferent. Perhaps God allows suffering because he gave us free will and that suffering is a natural response to sin in the world, like there’s some sort of invisible sin-field in the sky that is preventing God’s good healing power getting through? Or maybe it’s the devil.
Well, the age-old question of free will reared its head and led me down another rabbit trail. Being a social worker, my view on psychology was nuanced and having spent ten years working with foster carers of children who had experienced significant harm, I knew how much early childhood experiences can hinder a young person’s ability to function as they would want. What really causes us to think the thoughts we do? What directs our actions? What makes us want what we want? Is it some cosmic battle between good and evil or is it really just chemicals in our brain, which are impacted by the weather, our early life experiences, and individual circumstances?
I found myself reading book after book, trying to make sense of some of these issues. I watched endless YouTube videos and listened to hours and hours of podcasts. In the first year of my illness, I had the cognitive ability to read. However, after that, I struggled to read hefty tomes. I even read Crime and Punishment by Dostoyevsky to gain more insight into the challenging issue of morality. What started to become apparent was that whenever I watched a YouTube video debate between a Christian and an atheist, I frequently found myself siding with the atheist over many arguments. This wasn’t about me trying to find reasons not to believe because I felt that God had abandoned me. I was looking for reasons to believe. The trouble was, I found that many seemingly reasonable answers I had accepted in the past had become appalling to me.
I started to read Tim Keller’s book on suffering (The Reason for God: Belief in an Age of Skepticism) and yet only managed the first chapter or so before he stated that, as the bible says, everything happens as part of God’s plan. He cited the 2004 boxing day Tsunami that killed multitudes of people across Asia and beyond: Seemingly God had a reason for all those thousands of people dying in a disaster that an all-powerful God could have prevented.
Once one starts to apply faith to justify something truly horrific, it seemed to me that one’s credibility vanishes.
I continued to come back to the theme of free will. A Christian view would be that God has given everyone free will, which is why there is human suffering. Most human suffering is a result, somewhere along the line, of humanity’s fallen nature and a corollary of being able to choose freely.
Something that I had not considered before was the idea that for God to answer prayer, he needs to violate free will on a regular basis in multiple people so that he can provide the answer that a praying Christian has requested. That parking space that has been prayed for? How does God actually provide a space for you? This would involve a hugely complex arrangement of timing and meddling with someone else’s free will to ensure that they decide to go home at exactly the right time in order for you to get their space before someone else grabs it. While providing a parking space in the Western world for us, there are children starving in countries like Haiti and Yemen.
I became increasingly of the view that we have far less free will than we would like to think we have, but not because God is acting as a puppeteer. As humans, we’re constantly impacted and influenced by outside forces. Just consider the subtle power of advertising, especially in this age of social media and personalization.
Every moment, our bodies and minds are responding to stimuli. One symptom of my illness that developed after a number of months were physical tremors that are often triggered by pain. These tremors can be in my legs or arms, hands or head, even in my jaw. Sometimes they’re gentle. At other times they’re violent and can leave me breathless and my head spinning. I’ve learned to live with them. However, living with a body that I can no longer control made me think even more about free will and how I don’t have free will to bend my body to my own will. I didn’t have a choice as to whether these tremors would take over my body and neither did I have a choice about what I believed. I wanted to believe, but the more valid questions I asked, the less I was able to.
This matter of faith or belief rose to the surface again and again. Why do church leaders and seasoned Christians encourage doubters not to read “certain” books? If those books which assert a rational and scientific process in the hunt for truth are to be avoided, then what does it say about the underpinning of faith? Now, I’m not equipped to delve into an academic appraisal of science vs religion, but I do want to have good reasons for believing something to be true or false.
What does it mean to believe something? If faith is the evidence of things unseen, what does this mean? How can we find any path to truth when the foundations of that truth are grounded in mystery? I started to learn about the concept of epistemology; that is, the theory of knowledge and how we know what we know. I had an urge to know how we know things. What methods were used to make conclusions on important matters?
I started to realize that much of what I thought I knew in relation to the Bible may not necessarily be accurate, or very hard to establish based on the historical record. I remember completing an “Alpha Course” in my teens. This is a weekly course on the basics of evangelical Christianity which is open to everyone. Of the confirming evidence given, I remember being told that there was far more evidence for Jesus than there was for Julius Caesar. I have since discovered that this is patently not true. We have many documents written by Caesar’s own hand, we know for sure that he crossed the Rubicon on the 10th January 49 BCE and we have coins with his image on. The reality is, there is very little historical extra-biblical evidence for the life and death of Jesus in the first 60-80 years after his death. Those first few decades after his death are like a mobile phone dead spot. There’s no way of knowing what happened then and the gospel accounts of Jesus’ life were written many years after events by people who were not eyewitnesses, with the names Matthew, Mark, Luke and John being added centuries later.
I discovered that a great many of Paul’s letters, which were the first documents we have written within New Testament Christianity, were actually forgeries and only about 7 are confirmed to have been written by Paul. I also learned that there was a rich trend of forging letters in the names of disciples and early apostles in order to give letters more gravitas. So amongst all this noise, how can we have trust that the Bible we “know” today can be trusted when even those who decided on its contents had blazing arguments in heated meetings when trying to come to the conclusion as to what to include and what to leave out? If current-day politicians and world leaders spin reality and control news agendas, regularly broadcasting lies about events, how can we trust people 2000 years ago not to have placed their own spin on events to suit their own ends?
In a vain attempt to hold on to my faith, I thought perhaps I could be a mystic Christian…that I could hold space in the mystery and find a form of universal truth. Yet the niggling doubts kept coming. I could no longer accept the notion of original sin. That is, the concept that everyone is born sinful in a train of messy sin going back through time all the way to the first people, whom God created. When both my children were born, I could not look at them and think that they were sinful because of other people’s choices. I wasn’t even sure I believed in sin as a concept anymore when I could see how much children are shaped by their early experiences.
Time went on and my health continued to decline.
One significant point in the process was when my mum’s second cousin visited. She is one of those people whom I only see every few years. She came over to our caravan and we talked for hours. She spoke about nihilism and how her view was that, when we die, we just stop. This idea had always seemed very bleak to me, but how she talked about it, and in regard to the death of a loved one, she carried a real sense of peace.
Yet, non-Christians weren’t supposed to be at peace with things. I had always believed that only Jesus brought real peace, and that goes beyond understanding. Yet, here, I was faced with someone who had in the past had a Christian faith, but was doing ok without any God belief system at all. When you really open yourself up to really listen to someone and meet them where they’re at, with no imbalance of objective truth from one party, it can be an awakening experience.
Shortly after that long conversation I started to feel that my worldview was shifting and it made life uncomfortable at times. When you realize that the belief system that you’ve held so dear throughout your whole life isn’t making any sense to you any more, it’s easy to totally lose the plot at times. I was rather grumpy but couldn’t see it in myself. I was becoming cynical and didn’t like that this was who I was becoming, yet it was like I was carrying around a big void inside. I couldn’t not believe. That was too much to even contemplate. Yet, what if it wasn’t true?
How do we have integrity in our identity and core being if we carry on trying to believe when our minds cannot accept the belief system? For some months, I allowed the doubts to subside and continued to console myself with a universal Christ mandate. Everyone goes to heaven, or at worst is annihilated. I couldn’t consider the worship of a God who was less moral than myself—a God who set up a system that sends people to eternal conscious torment, just for not being able to believe something from a very long time ago.
Again, I was trying to choose to believe that there was a loving God somewhere within the messy and twisted “history” of the Gospel story. But then, if you discard the hell narrative, why do you need to be “saved”?
I increasingly felt that the progressive Christian approach didn’t carry integrity. I had previously convinced myself that the Bible could be read in a way that condoned same-sex relationships. And I understand that many LGBTQIA folk choose to read the Bible this way.
For me, though, the Gospel is divisive and hard line. It doesn’t claim to be anything else. The god figure demands total commitment to the cause. He said he came to cause division, denied a man permission to bury his father, and adhered to all the laws and stories of the Old Testament. As part of the godhead, Jesus was there when the god of the Old Testament apparently committed mass genocide by wiping out all but eight of the human race. Children, babies, old and young drowned in a horrific slaughter that was intentional. This capricious, angry, and jealous god was one and the same as the meek and mild Jesus who talked about the poor more than any other topic. The man-god who encouraged children to come to him is the same god who sent bears to maul 42 children because they insulted a prophet’s baldness many years before.
Unless he didn’t. Unless, maybe, they’re just stories and they were never meant to be read as fundamental truths.
One of my best friends who I met along the ME journey is an American secular Jew. We try to talk most weeks when our health allows. We find ourselves fascinated by early Bible history and how we see these stories from different perspectives. I’ve learned so much from him about how Jewish and Christian interpretations of Old Testament stories differ. To many Jews, the nature and factual validity of stories matter less than the process of discussion itself.
We once had a long discussion about the book of Job, a character whom God allows an accuser (Satan perhaps) to torture. This story is often used to explore themes of suffering and seeks to help us think about God’s nature. God proclaims his unquestionable, unfathomable might. However, the story doesn’t really resolve itself. After Job loses his wife and children in this cosmic wager, God restores favor to him by giving him a new wife and children without any acknowledgment of the grief and trauma that he has experienced. I once heard someone preach that Job was a real character. The book however was never meant to be read as a literalistic and historic narrative but is rather a fascinating example of how storytelling is embedded in Jewish culture.
With all of these newfound ideas swirling around in my head, and following 18 months of chronic illness and faith crisis, I knew I was nearing the end of my Christian road.
This eventuality was never something I wanted but I knew I needed to say goodbye to my former self for now. I read a book called Four Disturbing Questions with One Simple Answer by Tim Sledge, a former leader of a large church in the US who has left the faith. I had intended to read this book previously but knew that the time had to be right.
It ending up being the book that finally broke the hold and I knew I had to make a decision. I couldn’t provide good enough answers to those questions. I finished the book and said to myself, “I guess I’m no longer a Christian then.”
With this realization, I thought that the ground would swallow me up instantly. But, instead, nothing but a wave of peace and relief washed over me.
This wasn’t what I expected.
An existence without Christ was meant to be a hopeless, joyless…lifeless affair. I’d already lost my life to an angry chronic illness, which had made my legs look like pins from lack of use, a condition that had stolen much of my joy (although I’ve never felt depressed, just low). It had become an existence in which all hope had seeped away from me. When I switched off my Kindle and looked at the ceiling that day, much to my surprise, I simply felt relief.
Now, I felt a weird joy. Now, I felt strangely hopeful.
Chronic illness like this is, I feel, a unique thorn in the side of Christianity’s ability to boast about healing. There’s less of a chance of having a person on stage throwing away crutches. You can’t know someone has been healed until years later and a healing is hard to put down to God’s intervention.
As with any suffering, such illness does seriously leave a believer questioning why. Within the faith system, so often the search for an answer can result in the believer placing responsibility on themselves. Could it be a sin they haven’t repented for? Or are they just a worse sinner than those God appears to favor with money and health? Everything happens for a reason, after all, right?
Perhaps they haven’t forgiven someone, or God is testing them. If it was a test for me, then I clearly failed. Or if it is presently a test, then I am failing knowing I did everything to hold on. And when the holding on fails, it’s the believer’s fault for not trying hard enough. The blame is always on the believer, whether others state it or not.
I now have a philosophy that shit happens, and good things happen. And that these things that happen are part of what makes life tangible. I don’t have to have a grand worldview anymore, I’m ok with not knowing things—I can live with uncertainty. I can take moments to practice mindfulness and appreciate the small and beautiful things in life. I can be grateful without having to be grateful to someone. I can become friends with somebody else without having to have an agenda involving trying to save them. I get to decide what I think about matters of morality and justice, aware that my own life privileges may still shape my thinking. I can apply humanism to my interactions and wish the best for people without an invisible divide along faith grounds. And the little things: I can swear if I want. Fuck.
I still live with the physical grinding exhaustion of ME, but I no longer have to experience the spiritually grinding exhaustion that comes from wrestling with an invisible God. This wasn’t a cop out, it was self-preservation.
As for my teenage healing? What do I make of that now? I think music and belief are both very powerful things. I had a strong belief that I would be healed and I think certain music engages our brains and brings us to altered states of consciousness, leading to dopamine flooding our system. Reading Michael Shermer’s The Believing Brain: From Spiritual Faiths to Political Convictions How We Construct Beliefs and Reinforce Them as Truths was important for me in understanding how our brains work in relation to belief and neuroscience. Did I have the free will to choose anything other than belief then and do I have the free will to choose to believe now? Who knows? But I’m ok with staring into the void with the beginnings of a smile on my face.