To mark Cystic Fibrosis Awareness Week, I chatted to The War Cry about being a Christian and living with CF.
Believing in God changes everything. Without him, cystic fibrosis is an unlucky mistake or a cruel twist of fate – it’s a death sentence… With him, I see it as part of a loving plan for my life and a reason to look forward to eternal life.
You can find the rest of the interview here.
I’m in the April edition Woman Alive magazine talking about living life as a Christian with CF.
“My life is filled with mundane tasks and bodily brokenness, and it’s easy to think that there is nothing of value here. But, as one of my favourite quotes says, ‘God comes to us disguised as our life’ [Paula D’Arcy] and that transforms everything. God is here making himself known to me in the long hours of physiotherapy, the tears of pain and confusion, and the dark nights of the soul which can seem unending.
“The fact that God is here doesn’t take away the reality of the mundane, the brokenness or the darkness, but it means that they are places I can know God and that fact brings beauty, loveliness and hope to them.”
Read the rest here.
A ray of evening sunlight and lovely flowers make for a peaceful still life. Not so peaceful is the noise of the neighbours’ TV coming through the wall. They like action films. I do not.
I’ve lost a decent proportion of my hearing due to antibiotics and I will probably continue to lose more and more. The idea that I could go deaf scares me. My days are filled with listening to things because I’m not well enough to do much else. I ask God over and over to spare my hearing. And then…. I hear the noise from next door and get annoyed about it.
It shouldn’t surprise me that I forget my blessings so easily. But I do. Again and again. Perhaps it will be easier to remember if I say it out loud. Here goes: I am grateful for the noise coming through my walls. It tells me that I can still hear things, that I have the joy and responsibility of having neighbours, that I am blessed enough to live in a house, and that I have the luxury of so much quiet that I notice when there is noise.
Thank you, Lord, for your good gifts, even though I am slow to recognise them as such.
It’s a back-in-pyjamas-by-5pm, body yelling at me to just stop trying to do the next thing kind of day. I’m not often very good at listening to my body (though I’m excellent at telling other people to listen to theirs!). I always want to keep doing things because in my mind, doing things = being useful.
It’s one of the hardest lessons God is teaching me through CF: His view of useful and worthwhile is different to my own. He’s given me a body that needs a lot of rest and can’t do a lot of ‘normal’ things and yet all His promises count for me as well. I’m tempted to think that I can be worthwhile despite my weakness, yet He tells me I can be worthwhile even in my weakest moments. How? Because His power is made perfect in weakness.
It’s more obvious to me than most – I can’t live life by myself. I mean, half the time I can’t even get my own jeans off at the end of the day. Being weak makes me see my need. And when I see my need, He is there to fill it. Father, Saviour, Breath-giver. Comforter. Protector. Burden-bearer. .
Today I feel small.
That’s not just a reference to my vertically challenged frame (4′ 11″, because I know you’re wondering!) but a feeling that comes from deep down within me. I know my life is a small one. I often have days where I’m on my own until David gets back in the evening. I’m not particularly active on social media. I can count on one hand the number of people who know me very well. I know all that every day, but some days the knowing and the feeling come together almost tangibly and I marvel at the magnitude of ants.
Right now I sit here curled up in my armchair with blankets around me. My rising temperature warns me that in yet another round of Ruth vs Bacteria, my body is losing. My weakness is obvious and painful. I can’t even win against an organism I can’t even see.
And yet a glance up from my armchair reassures me. God’s got his paintbrush out and the sky is a plethora of colours. Orange! Pink! Purple! Grey! Not even a pentachromat could tell you all the colours. The God who streaks the sky with colour also makes Himself known in smaller ways; a still, small voice, a dove. The God who is greater than my mind can begin to fathom cares about smaller things; the sparrows, the flowers, the hairs on our heads.
Small doesn’t equal bad.
Small doesn’t equal useless.
Small is a privileged place to be.
Small is a wonderful thing to feel.
Small sees myself in an accurate light and helps me see God as more mighty, more glorious, more loving.
Today I feel small and for that I am grateful.
Underneath us, O how easy;
We have not to mount on high,
But to sink into His fullness,
And in trustful weakness lie.
And we find our humbling failures
Save us from the strength that harms.
We may fail, but underneath us
Are the everlasting arms.
The last few weeks have been hard. Breathing is a struggle and uses enough of my mind to make it difficult to focus properly on anything else. My oxygen flow rate is higher and so the soundtrack to my days is the whistling and blowing of air into my nose. Silence is something I remember but no longer experience. But this isn’t the end. I found this artwork on eBay and love it. It captures my idea of bliss. Winter, the peace and stillness that comes with snow everywhere, walking with my favourite person and our goofy dog through the trees. That has never happened and probably won’t in this lifetime. But it makes me long for the next even more. Pain is not the end. Peace is coming.
Five years. Half a decade. To many people five years might seem just the start of a marriage. But when at the beginning you were expecting two years, five is a gloriously long time. Five is a cup-overflowing, ‘God, how come you love us THIS much’ time.
This year we bought a house. Another unexpected Yes.
‘Father, give us time.’ Yes!
‘Father, we need somewhere to live.’ Yes!
We are told that God is the Father who loves to give good gifts to His children. We see the sparkling, majestic goodness of God in the ‘Yes’s of the last five years. And we also see His goodness, His quiet, persistent, day-by-day kind of goodness, in the ‘No’s.
This past year has had its challenges. My health is far worse and more unstable than it has been before and the future can feel more scary than it has in previous years. As we enter our sixth year of marriage we know more about how little we know. But we know the basics in a deeper, truer, more delightful way. We know that God is all-Sovereign, all-loving, all-caring. We know that He has written our story for us and there is nothing better. And we know that after five years, through richer and poorer, through sickness and health, through better and worse, we love more profoundly and are loved more dearly than we would have ever thought.
I am so grateful to be living my life next to David. I am often astonished by how far his love goes and how tender that love is. I see his love in the glass of juice he brings me every morning without fail, in the tireless way he works to provide for me, in all the oxygen canister carrying that he does. I see his love in the frequent words ‘tell me what I can do for you’, in the exchanging of fun, exciting days out for yet another quiet day with TV and books because it’s all I can do, in the hand that holds mine when things are just too hard for words. It’s there in a thousand different ways. I know that his love makes no sense in the world’s eyes – why he would choose to love someone so small and so broken – and through him, I live the story of the Gospel every day.
I love you, David.
Yesterday marked five months of my being on oxygen all the time and I struggle with it every day. The discomfort, inconvenience and social implications are all hard to deal with, not to mention the various emotions that come with understanding what being on oxygen all the time actually means. It’s always hard to admit that my health has taken another significant step down and hard to accept and live happily at a new, restricted, painful normal. Since March 1st I’ve taken off the oxygen tubes for photos, tried not to look in mirrors and gone out far less because on some days even the points and questions of curious children are difficult to cope with.
Richard Rohr talks about living with a ‘bright sadness’ – the something inexplicable you see in people who live with suffering and yet have a deep joy at the same time. I love that phrase and it’s come to mind over and over in these past few months. Things are hard and sadness is a natural and legitimate response. But that’s not where it ends. I want to live that bright sadness and the first step is coming to terms with who I am now and learning to be grateful for that. So here I am, oxygen tubes and all. This is me and I’m working on being grateful for it.
For the past few years, I’ve been unwell over the Easter period. Because Cystic Fibrosis is degenerative, every year I experience death that little bit more. This year in particular I’ve found myself often straining for breath, muscles tense, oxygen levels lower than normal, exhausted, everything in me crying out that this is not how life is meant to be. These past weeks and months have been a season of dying, a season of emptying, a season of letting go. And I know there’s more to come.
When I go through difficult patches, sometimes I find it hard not to feel fed up and, quite frankly, a bit cheated. Self-pity parties are all too easy. Suffering is painful and unhealthy inward focus comes naturally. And so I’m sure that it’s no accident that I’m often ill over Easter. Good Friday comes around and Jesus’ suffering is impossible to ignore. It only takes half a second to be reminded that I don’t suffer alone, that my suffering is nothing compared to His, and that He suffered so that one day I won’t have to suffer any more.
On that Friday afternoon, Jesus gave his all.
He was lifted up on a cross so that I could be lifted out of the bog of my sin and become my Father’s daughter.
He cried out ‘My God, my God, why have you forsaken me?’ so that when I cry the same question, I can receive the answer, ‘I will never leave you or forsake you.’
He took His last strained breath so that when I take my last breath it won’t be the end of my life but a glorious beginning.
He died in darkness so that I can live in light, both now and forever.
One day this season of dying, of emptying and of letting go will culminate in the death of my body. But because of the events of Good Friday and Easter Sunday, I hear the ‘It is finished!’ cry of Jesus echoing through the ages and heralding the end of sin and suffering forever. What a Saviour!