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Living with a life-limiting illness

Ruth van den Broek was diagnosed with the degenerative disease cystic fibrosis (CF) as a baby and grew up knowing she would not live to a ripe old age. Now in the ‘twilight years’ of her late twenties, she tells Sharon Barnard why she is able to look to the future with hope

When breathing is hard work, every step, every ordinary activity becomes a massive challenge for people with CF.

“Getting washed and dressed always feels like a mountain to climb. Even talking can get me out of breath,” explains 29-year-old Ruth, who needs to conserve what limited energy she has for the daily round of physiotherapy, breathing treatments and medication that help her to manage the condition.

Then there are the emotional and practical challenges of this degenerative disease on her life with David, her husband of six years whom she met for the first time as a two-year-old at the church where her father was a pastor.

“Recently I’ve been spending more time as a hospital inpatient (almost four of the last five months) and that is incredibly hard to deal with for David and myself.”

As a child, Ruth was home educated to limit her exposure to infections and as a result was “extremely well” growing up and able to do ballet, attend Brownies and take part in church activities with her two sisters. But when she reached the age of 15 her lung function rapidly declined, and at 16 the reality of CF hit home when she was told that she probably had two to five years to live.

“Of course it was difficult, mostly seeing my parents’ reaction to the news, but my main response was excitement for the new life after death and the knowledge that I would meet Jesus sooner than I had thought. As it happens, God’s plan has been to extend my life and he has shown himself to me in ways that 16-year-old Ruth couldn’t possibly have conceived. It’s been harder than I imagined life could be, but I still aim to cling on to the childlike faith that is excited to meet Jesus in whatever ways he has for me.”

Ruth loves writing and blogs about her life, revealing the ups and downs and how she has learnt to see “beauty in the mundane, loveliness in the broken and hope in the darkness” as she puts it.

“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.”

As a “fiercely independent” person, it’s no surprise to Ruth that God in his wisdom chose for her a life of obvious, increasing dependence and need. “There is no way for me to pretend that I can make it on my own when I need help getting my jeans off at the end of the day! Being so inescapably needy helps me to run to God and seek his comfort and strength.

“I love 2 Corinthians 4:7–12 where Paul talks about us being like jars of clay. We are fragile beings … but it is often in our weakness that we see reality most clearly – we simply don’t have the resources to make it through on our own and we need God.

“Paul then goes on in verse 17 to say how the trials of this life are light and momentary compared to the weight of glory to come. I find that wonderfully helpful, as it doesn’t diminish the difficulty of my suffering but helps me to realise that if something this hard is comparably easy, then the glory to come must be unfathomably wonderful.”

What would she say to encourage others who are struggling in some way, or like her may be living with a life-limiting illness?

“Firstly, that it’s OK to be sad and find things difficult. We like to fix people and make them happy again. But life isn’t like that. The Bible gives us plenty of examples – David cries out in the Psalms, Paul begs for his ‘thorn in the flesh’ to be taken away, even Jesus asks if there is another way.

“Secondly: keep heart, he is faithful and he knows what it is to suffer. Underneath you are the everlasting arms (Deuteronomy 33:27) and he will keep you safe.”

Bright sadness

An entry from Ruth’s blog, One little drop

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 1 March 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.

Read more at https://ruthvdb.co.uk

What is CF?

It is an inherited disease caused by a faulty gene. This gene controls the movement of salt and water in and out of your cells, so the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food.

Half of all people who died with CF last year were under the age of 31.

There are more than 10,400 people living with CF in the UK and the population is growing every year.
People with CF often look perfectly healthy. But it’s a lifelong challenge involving a vast daily intake of drugs, time-consuming physiotherapy and isolation from others with the condition. It places a huge burden on those around them and the condition can critically escalate at any moment.

Half of people with CF alive today are expected to live into their 40s, thanks to earlier diagnosis and ongoing developments in care and treatments.

Info from Cystic Fibrosis Trust, the only UK-wide charity dedicated to fighting for a life unlimited for everyone affected by cystic fibrosis. Visit www.cysticfibrosis.org.uk

 

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