Tanya Marlow is another Mudroom and SheLoves contributor, and she writes bracingly about suffering, theology, and faith. She’s also bedridden most of the time. I’m grateful for her voice, and her experience, because she’s both honest about how sucky her disease is, and also fiercely wise about what God teaches her through it. She makes me braver to admit my own weakness, instead of trying to pretend it’s not there. I’m so honored to have her here today.
So you suffer from myalgic encephalomyelitis (ME). Can explain a bit about the disease?
Even as recently as 2006, I was a runner, notching up five miles runs, three times a week. Now I can only walk a few metres per day. I was formerly a busy Christian minister, but now I am housebound, only able to leave the house once a fortnight or so, in a wheelchair, for a couple of hours. I’m in bed about 21 hours a day.
This was all the fault of M.E. – Myalgic Encephalomyelitis, an autoimmune neurological illness. It’s like having a faulty phone battery that loses its charge quickly and never fully recharges. Exercise and over-exertion, rather than strengthening the system, as it does for most people, weakens the body further. M.E. is a multi-system disease, and for me the symptoms include pain, sensitivity to noise and light, inability to regulate my temperature, weak immune system, neuro-cognitive impairments, tachycardia, breathlessness, fatigue, extreme muscle weakness, mobility problems, dizziness and vertigo.
A note on the name – M.E. is not well known in the US because in the 1980s a group of scientists decided to rename the illness ‘Chronic Fatigue Syndrome’ and redefine the illness to make ongoing fatigue the central symptom. Unfortunately, this had the result of trivialising the illness (‘you have CFS? I think I have that – I feel tired all the time too’) so most patients prefer the original name that Dr Melvin Ramsay came up with, Myalgic (painful) Encephalomyelitis (inflammation of the brain and nerves). More recently the IOM have suggested a new name: Systemic Exertion Intolerance Disease (SEID), so others may know it as that, too.
You wrote a post about needing to be carried sometimes—your husband had to carry you up and down your stairs, and people have had to lift you up in church, very literally. What has the practice of being physically weakened done to your faith—for better or for worse?
In 2010, I gave birth to a much-loved baby boy. Unfortunately, the exertion of labour worsened my M.E., and I awoke the next day with a new baby and a new disability. Overnight, I had become housebound.
During the last five years, I’ve discovered that all the ways I formerly connected with God—intellectual study and Bible teaching, communal worship, Bible studies with friends—disappeared. Formerly, I had taught apologetics—finding intellectually rigorous answers to questions like the existence of suffering. Now, I was no longer talking about the issue of suffering, I was eating it.
There is a much-beloved narrative in Christian circles that if you undergo suffering, you have a heightened sense of the presence of God. I did not find this to be the case. For a long time, there was a wilderness while I fought to keep my head above water physically and spiritually. Blogging helped me scratch out a still-forming theology, and the blogosphere gave me a sense of community and connection with other Christians. I found other, longer paths back to God—things like liturgy; quieter Christian music; the books of Job and Ruth; other Christians’ stories.
My book, Coming Back to God When You Feel Empty, is an intertwining of my story with the biblical book of Ruth, because it was one of those paths that led me back to God. I wrote it for others who were feeling empty after a period of suffering, and questioning where God was. I found I was drawn to the bitter and confused character of Naomi, and found in the text the fingerprints of God upon her life – and mine.
What are we missing of God, of the world, or of our selves when we’ve not experienced or avoid confronting physical suffering?
What are we missing of God? That it is a gift to know a suffering God; one who has known what it is to be in physical pain, struggling to breathe; a God who was wept. There is no other worldview or religion that honours suffering in this way.
What are we missing of ourselves and the world? That we are bodies, as well as minds. We are all made of dust. It is tempting, especially if we are rich westerners, to tell ourselves the story that Hollywood tells us: that we are beautiful, young, and immortal, and we can do anything we want. This is not true. We are all limited, in various ways, because we are not God. Disability heightens this awareness, but it is true for everyone.
What gifts has ME given you? (And if this is too much of a “wrap it up in a pretty bow so we all feel comfortable” question, feel free to be really honest about how it’s not a gift.)
Other disabled people who I greatly respect embrace their disability as part of their identity, and would not exchange it for their former life, because of the things they’ve learnt through it. But I always get a little nervous at these kinds of questions, because if I had a choice, I’d happily exchange the gifts of M.E. to be able to play in the park with my son. Suffering is suffering, and it’s hard, and it’s not a gift in itself.
But, you’re right to say there are gifts that have come with it. One has been the ability to fight perfectionism, tooth and nail. I can’t do most of the things I want, so I need to say no to a whole bunch of things. Before I had severe M.E., I was always very bad at listening to my body, resting, and saying no to others’ requests and listening to my body. Now I’m only medium-bad at those things. That’s a big change, and it’s M.E. that has forced me to prioritise in this way.
Another gift is a renewed appreciation of the natural world. I only leave the house occasionally, so I feast on the sights, sounds and smells when I do. Another is creativity, and finding myself able to write. Getting to know an international cohort of talented friends (such as your very good self) through blogging has been an immense privilege, and I would never have discovered these people if I weren’t housebound.
You started an advocacy organization to address the deep cuts in disability payments in Britain that the now ruling party was proposing before the election. But you told me you had to quit because it swallowed you up. That sounds very familiar to me. What does it mean when we’re led to start something and led to quit it? What the hell is God doing with that?
Ha! Good question. I asked myself that very question several times…I would love to be the messiah of disability rights in Britain, but I’m not, and it’s good for me to remember that. We don’t have to save the world in order to make a difference. I spoke, and I got others to speak. I intended to speak for longer, and louder—and so I was disappointed when my health prevented me. Ecclesiastes says there is a time to speak, and a time to be silent. I always imagine that we’re in charge of deciding when to speak, and when to be silent, but sometimes those things are decided for us.
Whenever I’m feeling the sense of shame of not achieving as much as I would have liked, I remind myself that if something is worth doing, it is worth doing badly. Change often comes through lots of people doing small things imperfectly.
Tanya Marlow was in Christian ministry for a decade and a lecturer in Biblical Theology, until she got sick, and became a writer. Her worst habits include laughing at her own jokes and singing songs without knowing the lyrics. She writes honestly at Thorns and Gold on the Bible, suffering and the messy edges of life. She is the author of Coming Back to God When You Feel Empty, which you can get for free here.
Image credit: Alia with my modifications