Just over three years ago I was filling in application forms for my Blue Badge. It wasn’t the most pleasant of processes and I thought to myself, ‘At least I won’t have to do this again.’ I was pretty unwell and it seemed very unlikely that I would outlive my Blue Badge.
A few weeks ago my Badge was about to expire and so I sat down and filled out the forms for the second time.
And last month I celebrated the 10th anniversary of the day I was told that I’d probably live for another two to five years.
I’ll be honest, there have been several (OK, many) times throughout the last few years where I’ve thought that it would just be easier if I popped off (and it probably would have been). But here I am, 26 years old, with 22% lung function, able to live most of my life without extra oxygen and continually surpassing what I’m ‘meant’ to be able to do.
That, my friends, is called grace. God continues to be faithful and loving (despite how infrequently His plans for my life match up with my own!)
I am grateful indeed.
It’s been 4 years now. I think I’m meant to say that it’s all flown by so fast and I’ve loved every second. But you know that’s not the truth. In many ways these last 4 years have felt so long. I look back at our wedding pictures and it amuses me to see two very young people. I know that we are still young – at 25 and 26 years old we’re hardly ancients. But things are different now. We are older. I’m a lot more tired! We’ve read books and learned together. We’ve changed our minds on various topics and sometimes changed them back again. We’ve lived through better and worse, richer and poorer, sickness and health and we love and cherish so much more because of the journey.
I love learning with you. But I don’t have any easy answers. In fact, often times I have no answers at all. You know that. You’ve asked the questions and heard my silence. For me, learning that there aren’t very many easy answers was one of the hardest things about the last 4 years. It’s taken me years (and I’m still not too good at it) to start understanding that the silence and the ‘I don’t know’s are themselves valuable. We’ve sat in hospital rooms together in silence not knowing what to say or why this is happening again and yet some of those moments are among the most precious memories. In the silence and in the emptiness we have been filled. We’ve been poured out but God has never left us empty.
In my experience, the rain never quite stops. Sometimes it comes in tumultuous downpours and the sting upon sting of hundreds of raindrops hurling themselves at you feels like insult upon insult and just as you think that you can’t stand it any longer, the raindrops become tiny and the pitter patter of the shrunken droplets on your skin feels refreshing and almost comical. In that moment, don’t forget to look up because it’s then that you see the rainbow. That’s something you’ve taught me. You dear, oft-unrealistic optimist. ‘Hey Ruth, look at the rainbow! There’s always a rainbow.’ And you’re right. There is always a rainbow. There is always a promise of God. Creator God, Sustainer God, Redeemer God, Eternal God. Always a plan. Always a promise. Always a rainbow.
In these ways and in many others, you have been a beautiful picture of Christ’s love for his church. Your love for your broken bride is astonishing and wonderful. You are kind, gentle, giving, loving, godly, strong and your jokes are hilariously awful.
I never thought we’d be celebrating our 4th wedding anniversary. And yet, here we are. Praise God!
I love you, David.
In recent months I’ve read a fair number of blog posts extolling the beauty in ordinary moments. I’ve written a few posts in the last couple of years along those lines myself. But I’ve been finding that, in my own life, ordinary moments often don’t feel special and sometimes I struggle to find loveliness in the mundane goings on of life.
Cystic Fibrosis is not a lovely disease (what disease is?!). My daily physiotherapy is distinctly unlovely as I have to clear out whatever mucus there is in my lungs. My posture exercises are to stop me from becoming even more of a hunchback than I am already. And you should see my purple face after a violent coughing fit! Those are not moments to pin on my Pinterest board. No filter is going to make those into Instagrammable pictures.
Let me make myself clear. I wholeheartedly approve and applaud the attitude behind the ‘ordinary is beautiful’ movement. I’m a card carrying member of that community. There is nothing inherently wrong with blog posts, Instagram accounts and Pinterest boards filled with gorgeous images of simple things and descriptions of ordinary moments. But personally I find that those beautifully arranged vignettes and eloquent word pictures can make me forget something very important: Ordinary is allowed to be just ordinary. Yet in my pursuit to celebrate the ordinary, I sometimes fall into the trap of not actually celebrating the ordinary but celebrating the edited version of ordinary that I’m comfortable with sharing on Facebook.
The beauty in the mundane is very real. I can vouch for that. It’s found in accepting a calling that won’t make you wealthy or famous. It’s found in being genuinely thankful for your day’s food, whether it looks good through a camera lens or not. It’s found in knowing that there is a God who has planned your life such that where you are right now (be it awake in the middle of the night, clearing up after your children yet again, in a hospital room, all alone somewhere etc) is the absolute, number one, best place for you to be. But when I feel inadequate because ‘her’ mundane seems so much more beautiful than mine, I’ve missed the point of it all.
It’s a simple task to love the lovely but maybe your ordinary seems just a bit too, well, ordinary. That’s ok. Put down the camera and stop looking for the short term, little picture beauty. You might have to look at this ordinary moment in a long term, big picture way. You might not see the beauty until you look back from the New Creation. That’s ok. Sometimes we have to learn to let the ordinary be ordinary.
For most of my life I didn’t think I’d see a day of marriage let alone two years of it. It’s funny how wrong a person can be.
I was never into the idea of being in love but that goes to show how little I know about real love. Love is not about the moments that will move an audience to tears on a big screen. It’s not about the pre-packaged hearts and flowers. After all, the greatest act of love was a poor man dying on a cross.
This year, more than any before, I’ve seen the beauty of love that persists even in difficult and dark places.
The port, the PEG and having oxygen have been different challenges than we had before and yet David’s love for me has seen past those.
I can do less and less and simple things tire me faster but David has adapted to that. Instead of the active things he would like to do, he chooses a film or something that I can easily do. As he put it, ‘It’s ok because though I’d like to do something more active, I want to do what you can do.’
I’ve been blessed with a man who not only loves me but wakes up every day and chooses me. Jesus said that to find your life, you need to lose it. David’s choosing to love me is a giving up and a losing of his earthly life. My health affects so many things for us both. I was given CF but David chose it. And as we lose our lives, as we go through life with so few of the things by which people measure success, we find life in places we never knew it existed.
This year we’ve been able to count CF among our blessings. This year we’ve learned that God really does work through people who are weak. This year we’ve fitted our God-given roles that little bit better. This year we’ve grown-up in ways we didn’t even realise we could.
Our third year starts today and we trust and pray that, over the next 365 days, our marriage and our lives will yell ‘Jesus is King!’ louder than ever.
I love you, David.
My attitude to Cystic Fibrosis has changed a great deal over the past few years. It’s been influenced by the questions that people have asked me, the way I’ve seen others behave, the assumptions that people make about disabled people and through my deeper understanding of the gospel.
I used to think of CF as an evil, external thing. But I don’t think that’s helpful anymore.
I need to be able to see it as a result of the fall.
But I also need to see it as a gift that was chosen for me before time began and was given to me by the Father who knows how to give good gifts to his children.
I need to see it as one of the main shapers of my life.
I need to see who I might have been without it.
I need to see how it has helped to change David for the better.
I need to see the eternal perspective it has helped us live with.
I need to see the people we’ve been able to meet and chat to because of it.
I need to see the lessons in patience and trust and many, many other things.
I need to see how many times CF has forced us to our knees in prayer.
I need to be able to thank God for CF and mean it.
Of course, CF and its implications often make me and my family very sad. That’s ok. CF is not going to be in the New Creation. It’s a result of sin. But it is a very real part of me and who I am today. And having had it in this world, it will affect who I am in the next.
I think it is so important that I don’t see CF as this thing that my doctors and I are fighting. That image takes away all of the good things. It changes me from a suffering person, helpless and needy before my God, to a person who, empowered by modern medicine and my own strength, can make it through illness.
I pray that I would get better but my job is absolutely not to spend my life fighting to keep my earthly body alive as long as possible. It is to spend my life in a way that shapes and beautifies my eternal soul. Of course, my body is important. David and I do make decisions that mean a longer life and more suffering. It’s against the gospel message just to give up. But the longer I live, the more I am convinced that an aggressive attitude to our illnesses and diseases is not a faithful one. When I am aggressive towards the tool in the hand of the Master Craftsman, then I miss His ultimate vision, I forget the necessity of every blow and I also fail to see the kindness in His eyes.
Living with a disease is not easy. I’ll be the first to admit that. But being able to focus on the life-changing work that God is doing rather than on the body-destroying decay that disease brings is vital.
If I see CF as an enemy, that attitude is not only likely to stifle my thankfulness but also to turn me away from the gospel path of rejoicing in weakness. I want to spend my life learning ever more that strength truly is found in weakness and that, thanks to God and His use of CF, I get stronger every day in the ways that really matter.
I find lots of different things hard. But one hard thing that keeps coming back, time and time again, is the hard thing of beauty.
The other day a nurse came into my hospital room, saw our wedding picture which I had on the wall and commented on how different I looked. It was a throwaway comment. But it’s one that I went into the bathroom and cried about. It’s one that I just can’t get out of my mind. Because it’s true. On our wedding day I did look different. CF didn’t affect me in the same ways as it does now. One month after our wedding I picked up MRSA, got a lot more ill and things have changed hugely since then. I’ve been on antibiotics which yellow my teeth, I’ve moved from osteopenia to osteoporosis, when I’m on IVs my hair starts to fall out, my skin gets dry and more translucent, my back hunches over more and more, a reaction to an anti-sickness tablet had far-reaching effects and the list goes on. And then I have the PEG, the port and oxygen tubes which are all external reminders.
I look in the mirror and see Cystic Fibrosis. I see the difference from my peers. I see who I used to be and the changes that make me who I am now. And it hurts so much. So many small things, stripped away. Making me ever weaker and realising all the more my need for a God who sustains and strengthens in different ways.
God is an artist. He sculpts and creates us. But I’ve come to realise that God is an artist who specialises in mosaics. Beautiful things made out of broken pieces. The breaking is hard but slowly, piece by piece, we are refashioned into something more interesting, more faithful and more beautiful.
I certainly feel that way. I’ve been broken many times and in many ways. But as each hard thing, like a rock, breaks down yet another part of me that I thought was good or pretty or useful, I see God picking up the pieces, reshaping them and rebuilding me.
I struggle to learn this lesson. Every now and then I hear a comment or glance in the mirror and all the sad, ugly feelings come rushing back. But this is just another step in the upside-down Gospel journey. What seems like weakness, is built up into strength. What seems like failure, is success far greater than this world can imagine. And what looks like ugliness, is transformed into beauty.
That’s the truth. And even the truth itself is beautiful.
Sometimes life doesn’t make sense.
My relationship with God right now is a crazy one. In easier days, I come to Him composed and with my well worded prayers. But in days like these, I come crying and questioning. It’s raw and it’s real. And actually it’s just hard. It’s hard to understand and it’s hard to be glad that God’s picked us out for these particular tough times.
Picture book Christianity is easy.
When life is good it’s easy to be grateful for the lovely things you have. Of course it is.
But it’s when something hard comes that your grateful muscles really have to be used. At first, because you haven’t used them much before, it hurts. It hurts like crazy. How can you truly be grateful for something so hard? But the more you use them, the stronger they get. It doesn’t make things hurt any less. It doesn’t mean that hard things are suddenly a breeze. But your grateful muscles become a powerful part of your weaponry. And the grateful prayers that seemed so hard at the beginning come more naturally now.
When things go wrong and are rubbish and hard and sad, I’m quicker now to say thanks. Thanks for the hard things. Thanks for the closeness to you that they bring. Thanks for trusting me with hard things and growing me through them.
That doesn’t mean I’m not confused. I often can’t see the point of the hard things for ages, some I still have no idea why we were given them.
But faith is full of upside down things. It’s confidence in what we hope for. It’s assurance of what we don’t see. And I think that it’s also gratefulness for things that don’t make immediate sense.
Like all of my muscles, my grateful ones are very weak. But God’s been giving them a good workout recently. David and I have both felt the burn of trying to be grateful even when we just can’t see why. We’ve failed many many times but the Lord is forgiving and our training continues.
Sometimes life doesn’t make sense. But our God takes the confusion and the pain and uses them to make us stronger. Now that’s something to be grateful for.
I long to change the world. I want to be that person who does something large and wonderful and because of that thing, life is better for many people. I hear stories of heroes and want to be like them. I feel inadequate because my world is so small and my influence so tiny.
But greatness isn’t just found on the battlefield or in the charity hospital or in the giving of millions of pounds. Greatness is found in living rooms across the world. It’s found in the prayerfulness of the old lady. It’s found in the perseverance of the chronically ill. It’s found in the joyfulness of the weary parent.
We make a huge error by assuming, by teaching, by living the lie that greatness is only found in fame and recognition. Greatness is found in the smallest of places, in the weakest of people, in the lowest roles. Greatness is found in service. Greatness is found in prayer. Greatness is found in our Lord Jesus. His is the ultimate story of small places, weak people and low roles. And yet, on that Friday evening, on a cross that represented shame and poverty, Greatness made itself known.
I long to change the world. And I can. Here in my tiny flat, my prayers change the world, my love for my husband changes the world, my faith changes the world. It may seem insignificant but our God never looks down on the small things, instead He loves to see them.
Our God calls us to greatness, right here, right now. Let’s start small.
When running a bath makes me wonder if I have enough energy to get in it.
When taking something out of the freezer makes me need an half hour rest.
When I work hard to eat enough to keep me going and I just can’t keep it down.
When I watch my oxygen saturations drop and my heart rate rise.
When I phone the hospital in defeat and ask for an appointment as soon as possible.
Then I truly know that my life is not in my hands.
Again, I realise that I have no resources of my own to fall back upon.
Here is weakness.
Today I have nothing but my God.
I love to help. I love to be the one that people come to when there’s a problem. I love the idea of cooking meals for people, driving people places, looking after their children and other great things.
I don’t love to be helped. I’m a very independent person. Doing things alone means a lot to me. I love being in control and getting things done.
Which means that the last year has been very difficult for me. Gradually I’ve found myself in the position of someone who needs to be helped. The help-ee, you might say. Family and friends bring us the odd meal and take me shopping, help clean our house and drive me places. It’s pretty hard. I always found it easy to be the helper but this new role is one that doesn’t fit me. It’s like putting on a new dress and realising that it’s too short and the sleeves are in the wrong place. It just looks stupid on me. I’m not the help-ee. This isn’t who I am. It ruins my own view of myself.
It takes a certain sort of grace to be helped. It requires a tearing down of pride. At times, I just can’t bear it. It feels as if everything is being taken away from me right down to my ability to cook and clean in my own home. After all, I should be able to do things for myself, right? Wrong.
I think I’m learning the real meaning of ‘The Lord gives and the Lord takes away.’ Sometimes I’m tempted to have a chat with the Almighty and set him straight: ‘You know, Lord, I’d much rather be able to do things for myself. I’ll trade back again. You can have your grace back and I’ll have my little independent world in order again. Thanks.’
But in my sane moments, the ones where I’m looking to my Lord, I realise that in the taking away itself there is a new giving. God never leaves you with nothing. That’s not His nature. When He takes something away he replaces it with something new and something better. Just like you’d expect from a ever-loving, gift-giving, cup-overflower like our God.
And so, my job is to pray, ‘Lord, thanks for the taking, thanks for the giving. And for now, give me ever more grace to be helped.’