On attitudes

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.

The School of Pain

I used to go to a bright school
Where Youth and Frolic taught in turn;
But idle scholar that I was,
I liked to play, I would not learn;
So the Great Teacher did ordain
That I should try the School of Pain.
One of the infant class I am
With little, easy lessons, set
In a great book; the higher class
Have harder ones than I, and yet
I find mine hard, and can’t restrain
My tears while studying thus with Pain.
There are two Teachers in the school,
One has a gentle voice and low,
And smiles upon her scholars, as
She softly passes to and fro.
Her name is Love; tis very plain
She shuns the sharper teacher, Pain.
Or so I sometimes think; and then,
At other times, they meet and kiss,
And look so strangely like, that I
Am puzzled to tell how it is,
Or whence the change which makes it vain
To guess if it be Love or Pain.
They tell me if I study well,
And learn my lessons, I shall be
Moved upward to that higher class
Where dear Love teaches constantly;
And I work hard, in hopes to gain
Reward, and get away from Pain.
Yet Pain is sometimes kind, and helps
Me on when I am very dull;
I thank him often in my heart;
But Love is far more beautiful;
Under her tender, gentle reign
I must learn faster than of Pain.
So I will do my very best,
Nor chide the clock, nor call it slow
That when the Teacher calls me up
To see if I am fit to go,
I may to Love’s high class attain,
And bid a sweet good-bye to Pain.
~ Susan Coolidge
When I was little, I used to love the What Katy Did books where the above poem can be found. As with so many things, I’ve wanted to adapt it slightly so that it becomes more grace filled than reward based but there’s still a whole host of things that have been helpful to me and that I’m grateful for.
I love metaphors. I love pictures. I love different ways of understanding reality. And I love the idea of a School of Pain and Love. Because life is about learning. And I just can’t stop learning, even if I wanted to. The Great Teacher is everywhere. His lessons are all around. I can learn in the quietness and stillness of a sleepless night. I can learn in the hustle and bustle of a tube train. I can learn in the laughter and joy on my nephew’s face. And I can even learn in Hospital Room 16.
And that’s where I’ve been. On my own little intensive course. The Teacher sent me off. Away from the comfort of my home and my husband and into a new environment with new and harder lessons. I know I haven’t learned the lessons that He has for me. But I’ve made a start. My handwriting’s still messy. I still can’t walk in a straight line. And you should see the way I mispronounce words. But over the course of 16 days in Room 16, I’ve begun learning lessons that last.
I’ve learned that a hospital room doesn’t have to be a place of spiritual barrenness. I’ve struggled with that in the past. They are some of the places that I’ve felt most alone. But it isn’t good for people to be alone. And so God showed himself to me in Room 16 and I knew I was truly loved. I’m not a very emotional person, the emotional capacity of a teaspoon is the way my family often describe it. But I cried more than once because I knew that my Father was with me right there in Room 16. 
I’ve learned to give thanks for small blessings. They’re always there, these small blessings. Even if they come in the form of having an IV line in my left arm instead of my right. Or being able to bless people in little ways – nurses like to be smiled at, cleaners like to be chatted to, catering staff like to be thanked.
I’ve learned the power of prayer. I had an inbox full of emails from people saying that they were praying. Some of the things we were praying for got answered with a no. But the power of prayer isn’t just about getting a yes. It’s about being able to ask in the first place. It’s about the joining of hearts and minds asking that God’s will be done. It’s about the encouragement that knowing people are praying can bring. And it’s about the privilege of talking to the King.
I’ve learned to say thank you. My thank you prayers are often hollow. But I thanked God for the suffering and meant it. I’m learning the joy that comes with saying, ‘Your will be done.’ Joy can be found in the strangest and hardest of places. But it’s worth it. 
I’m not perfect. Far from it. So far from it that God sent me to Room 16. I’m grumpy. I’m ungrateful. My refrain is often, ‘It’s not fair.’ I’m short-sighted. Don’t be fooled into thinking anything else. God is love. And I’m the loved. Wonderful, crazy love.
I need to keep learning these lessons. I know I have many intensive courses in my future. It may not be Room 16 but it’ll be somewhere. And right here, right now that scares me. But the lessons I began to learn in Room 16 are true. They are hard. They are big. But they are the lessons that my God has for me. And I’m here, with tears in my eyes and a smile on my face, learning them.

It gets harder…

It’s always a sign that things aren’t going well when the baby steps you take get even harder. Foetus steps isn’t a phrase and there’s a good reason for that! Marathons get harder and feel longer when you slow up.

Things took a turn for the worse in our house recently. It was pretty grim. It ended with a GP’s visit, a hospital appointment and a hospital bed. We found out a couple of days ago that if we hadn’t gone through the GP and had a hospital appointment, I would have been put onto a 5 week long waiting list. God never ceases to amaze.

And yet it makes me so ashamed that when God was sorting out my not having to wait for 5 weeks, I was complaining. ‘God, why am I so ill? What is this? Can’t we just have a year of marriage when things go smoothly? Ok, 3 months? Even better, just take CF away, Lord. I don’t want it. It’s not fair, surely you can see that.’ I’m called to trust in the small things and so often I’m blind and so often I’m ungrateful.

This little bout of illness has done two things, taken me into two phases.
The first is the realisation that life will never again be easy. I used to think it was. But I’m older now, a tiny bit wiser. And I know. I know when things aren’t going well. I know when life gets harder.
The second is the realisation that life will never be as wonderful as what’s coming. I watch people having babies and it hurts. Look at the King, Ruth. Look at his Glorious Kingdom. That’s where you’re going. Now go and have fun playing with the baby. I watch people playing sports and having fun and it hurts. Look at the King, Ruth. Look at his Glorious Kingdom. That’s where you’re going. Now go and have fun being a cheerleader. I watch people advancing in careers and it hurts. Look at the King, Ruth. Look at his Glorious Kingdom. That’s where you’re going. Now go and have fun listening to people’s stories and encouraging them.

There’s a reason we’re told that God does all things for our good. It’s because it’s true. And in tiny ways I’m being allowed to see this truth. Come and look through the cracks in life with me. Light seems brightest when it’s shining through a small crack. Walk into its glare and you’re dazzled. Better yet, sit down in the ray and bask in the warmth and light of our Father’s choices for us.

There’s a lot I can’t do. I can’t run, some days walking is hard. But I will outrun my illness. For now I can run metaphorically into the arms of my Saviour. I look forward to the day when I will physically run into Glory taking deep gulps of breath. And maybe even yell ‘Hooray!’ at the same time.

6 months.

New world, new people, new purposes. A lot changed six months ago as we said ‘I will.’ 2 little words changed us, changed our lives, changed our identities. And it’s a lot to get to grips with. Six months in, I still haven’t got it. Maybe it’s because I’m a slow learner, I’ll be the first to admit that. Maybe it’s because these changes are hard. Or maybe it’s because these changes never really stop still, never give you a minute to get used to them.

There have been hard changes. I always knew that would happen. I sat in a hospital room with a wall between me and my husband. A wall of physical pain and emotional pain with the question Why? written all over it in capital letters. I watched relationships change and knew that I’d never be able to get the old ones back. I had my daily schedule interrupted, my habits questioned and my property shared. Petty, perhaps, but still harder than you might think.

But I’ve tasted goodness in new ways. God pronounced his creation to be very good. And so do I. This thing works. We’re still babies. We can’t colour in the lines. We can’t look after ourselves. We can’t even walk without falling over. But we’re growing. We’ll never get there, whatever ‘there’ might be, but we’re noticing the growing and that counts. I believe in God’s grace now more than ever. I understand Jesus’s death now more than ever. I feel the Spirit working now more than ever. In just six months.

It’s funny how you think you know what’s coming and yet what actually comes is so different and so much more glorious than you thought. It’s funny how small our minds are. I’ve been given a glimpse of something more and something greater. I’m living this bride thing in a more tangible way than I was. And the beauty of it scares me. How can I do this? This bright, beautiful, wonderful, pure thing? And yet the very one who asks me to be his bride helps me to become his bride. I see love lived out in front of me and it helps me become lovely. I see purity lived out in front of me and it helps me become pure. I see strength and kindness and laughter and weeping and prayer and in those things I am changed.

It is a new world. I have a new calling. I’m to be a new person. I have a new person to die for and a new one to live for. I’m to breath a new breath of life and live it out. Here I am.

Thank you, David.
I love you.

Renewing my mind, tiny bit by tiny bit.

Count your blessings. It’s a phrase and an idea that’s been around for a long time. It’s associated with Christians or with so called old-fashioned values. I guess that puts rather a stigma on it but in reality it’s one of the best things a person can do.
I recently started reading a book called One Thousand Gifts. I’m not very far through it yet but it’s autobiographical in tone and in it the author has just started a list of one thousand things she’s thankful for. One thousand gifts. Most of them are so simple. But in reading the book I’ve found myself noticing more things as gifts. And by noticing, I’m crediting someone. I’m being thankful for those gifts.

I’ve been having trouble with the internet connection to my laptop but yesterday and today it has worked perfectly. I often take these sorts of things for granted by actually speedy internet connection is a gift.
As is the smell of my new scented candle.
And the look of the room after I’ve just tidied it.
The crumbly, tasty crust of the freshly baked bread I bought today.
The centimetre my amaryllis has grown in the last two days.
The gentle ticking of the clock in the corner.
The stars shining brightly in the dark sky.
The smell and shine of furniture polish.
The worn leather binding on my copy of Jane Eyre.
The ping of my phone as I receive a text.

See, I’ve done it. It’s very easy. It’s just takes a little time to think and a desire to be thankful and you have a whole new way of looking at the world. I like my world this way. I pronounce it to be good. Because this way, the good outweighs the bad and you notice it. If I just stick to noticing the big things then it doesn’t feel so happy. I don’t like the big, scary things of illness and not having a job and not knowing where my life’s going to go and feeling scared. But if there’s a hundred, a thousand, a million little good things in between the big bad ones, I want to start noticing them. Because I like to live in a world that is good. A world that is blessed. A world that is given to me. A world created by a God who loves His children.

So, Ruth, this is what you need to do. Take notice. And give thanks. For every tiny bit.