I hope this post can be a small note of understanding for my kind-hearted Christian friends and a small word of comfort for my brothers and sisters who experience the disabling reality of chronic physical or mental illness.
It’s very hard to explain the depths you reach when your whole life gets reshaped by a new catalogue of limits. When I was diagnosed with Lupus, I hadn’t even heard the term before. A friend of mine said Hugh Laurie mentions it in the medical drama ‘House,’ but thought it was made up to explain symptoms that had no explanation. However, it proved all too real when I was quickly thrown into a world that I hadn’t welcomed or even had time to warm up to. Absolutely everything changed. The pain was consistent, deeply exhausting, and complicated. I grieved the life I’d prepared for as my entire reality was shaken to the core, throwing everything out of place and leaving me in a landscape of loss.
Because I was a good Christian girl, I joined the chorus of faith surrounding me and proclaimed an imminent, miraculous healing at every meeting. I stood at the front, drowned myself in prayers, and worshipped with waving hands that were begging for attention from a far-away God. For some, healing does come, and those who receive it can continue life as they were, thankful to be over a hideous bump in the road. That didn’t happen for me; instead, I continued to dig further and deeper into the questions of living, looking for God’s heart beyond the few very small boxes I expected to find him in.
Lupus had become my new and very complicated life companion, and while I was busy adjusting, I failed to notice a steady isolation engulfing the space inside of me that was once filled with heart-warming community. My church was as desperate for healing as I was. But we had unknowingly used the miracles of God to disguise our fear-filled compulsions to control the uncontrollable. We didn’t call it control, we called it faith.
At times all I wanted was a confirmation from the outside that my existence was more than the title of my diagnosis. That, actually, my simple living was a profound contribution to an unfolding reality that was far bigger than the short days of my life, be they easy or hard. Instead, the fear inside of me latched onto the fears of others, causing the whole community to reduce God’s affection to mere mechanisms in order to make him move. We proclaimed and claimed, we worshipped and waited, we declared verses and statements of faith. We searched high and low for roots and wounds and sin. We sought and measured revival power by how much of the bad we could overturn, rather than recognizing the goodness of God hiding in what we called ugly and evil. I gradually grew tired and lost sight of God’s simple smile, unconditional love, and the real heart of living.
I have never felt so split in two as I did during those years when the face of Amy faded away into the grey, and Lupus took centre stage in my life. I was still in there somewhere, but just barely. With so much good in their hearts, people would talk to Lupus more than they would me, and I began to weep less about the physical pain and more about feeling reduced to a faceless project.
I truly know that it was the love of my neighbours that led them to want to fight for me, and for that I will be forever humbled and thankful. Even along our mistaken routes, God still travels our crooked paths with kindness, and not all is lost. I have simply come to realise that God isn’t as small as we have made him to be. We create little boxes for the divine, and typically we don’t trust that love exists outside of the stuffy space inside those boxes. Where mystery should reign, we’ve drawn neat lines and erroneous conclusions.
The approval of God isn’t measured by the comfort of our lives, and he isn’t reaching for that goal the same way we do. To only see our salvation in a problem fixed is all too heavy a burden in the midst of the often uncontrollable experience of being human.
We must let go of the small boxes and find courage to own the whole story of our lives. We should indeed ask for healing, but not because it’s the only place God is and the only way he moves. If we make that the story, we will constrict those who are suffering to a lifeless place. But if we can believe in his persistent friendship in the difficulty as well as the ease, we will experience resurrection from death on the inside, though our limbs still limp and our wounds still bleed.
My hope is that those of us with chronic physical and mental illness will find a peaceful life beyond the claustrophobic closeness of suffering. That we will break wide open when we quit believing that our trials are blocking love’s full expression and embrace a new perspective on God’s love found nowhere else.
Equally, I pray for my dearly loved Christian community that we would be conscious that our passion for healing can sometimes burden the wounded with our need to fix their pain. May we recognise our own anxiety in these delicate mysteries and not overwhelm each other with religious survival mechanisms. May we soften and listen and leave enough space to discover together that we’ve not hit a dead end. Let’s remind our broken brothers and sisters that they aren’t the title of their trials. May we make space for them to respond to their lives in honesty and simply admire the magnificence of beauty in a life that continues to curl and twist and grow around the obstacles, reaching for the light. For this is indeed still the gospel.
If names can be seedbeds of destiny then Amy-Louisa’s is certainly apt. Amy = love / Louisa = warrior. Her battle to let the healing and redemptive power of love permeate and belong in all things is the consistent passion of her life. She seeks the extra in the ordinary, finding adventure and spontaneity in the everyday; running the car to empty and seeing how far she’ll get, leaving the house with a toddler and no snacks, picnics in the pouring rain. Her list of loves is long; films with beautiful scenery, fleece blankets, cooking, windows and log burners, travelling beyond home comforts. She spends the small amount of peaceful time she has reflecting upon the complex relationships between the physicality and spirituality of humanity, not underestimating the importance of either.