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Grit and glory: living with an incurable illness

More than 10,400 people in the UK live with the genetic condition cystic fibrosis. It is caused by a faulty gene that 1 in 25 people carry, usually without knowing. This week (18–24 June) is Cystic Fibrosis Awareness Week and Ruth Van Den Broek tells Sarah Olowofoyeku about her experience of living with the life-threatening disease

I have prayed to God to let me die

AT the age of 29, Ruth van den Broek has already lived far longer than anyone expected. She was born with cystic fibrosis and, as a teenager, her condition took a significant turn for the worse.

‘When I was 15, my lung function declined over the course of a year and at 16 I was told that I had two to five years left to live,’ she says. ‘That year was an abrupt end to my childhood. ‘Death became close and a regular topic of thought and conversation. But my main response was delight because it meant I would see Jesus soon.’

Thirteen years on, however, Ruth’s relationship with death has changed.

‘I’ve defied one life expectancy prediction after another, so death is no longer a straightforward ending,’ she says. ‘Death in its more gradual forms is seen in the loss of my career, in the children that my husband and I will never have, and in the weakening of my body.’

The effects of Ruth’s illness weren’t always so obvious. ‘As a child, my life with cystic fibrosis wasn’t too dissimilar from the life of a healthy child,’ she says. ‘I was aware that I was different, but it didn’t bother me.’ Ruth was homeschooled, which made it easier to stay away from flu and chest infections, which could have been serious for her. People with cystic fibrosis experience a build-up of thick mucus in the lungs, which causes chronic infections. But Ruth’s lung function was high, which meant she could take part in extracurricular activities with other children and she enjoyed her childhood.

‘Back then my treatments were relatively simple,’ she recalls. ‘I had to do physiotherapy twice a day to remove the mucus from my lungs, take supplementary pancreatic enzymes when I ate or drank anything with fat in it, as well as various vitamins and oral antibiotics to prevent infections.’

Today, her situation looks different. ‘On an average day, I spend two to three hours in the morning doing physiotherapy, nebulising antibiotics and taking other medications,’ she explains. ‘During the course of the day I will take more regular medications – around 50 tablets – then do another hour of physiotherapy and I will also need to rest a lot in between it all. How I rest depends on how well I am. On a good day, I can read, listen to podcasts, watch films or TV programmes and enjoy thinking. On a bad day, rest means lying on the sofa concentrating on taking my next breath.’

In addition to medications and physiotherapy, Ruth has to give a lot of thought to the food she eats. Most people with cystic fibrosis do not absorb and digest their food easily because the small channels that carry the digestive juices from the pancreas to the intestine get clogged with thick, sticky mucus. Taking enzyme pills helps to digest the food. People with cystic fibrosis also need to have 20 to 50 per cent more calories each day than those without. ‘To maintain my weight, my daily target is 2,500 calories. I spend a lot of my day eating food or thinking about what I need to eat next. I find it difficult. A lifetime of having to eat when I don’t want to has meant that food very rarely holds any appeal for me. The food related parts of my day are hard and often unpleasant. ‘When my husband is back in the evening, we eat together before an early night so I get enough sleep to start the next day’s challenges again.’

As is the case with many people living with a chronic illness, Ruth’s cystic fibrosis takes its toll – not only on her, but also on the people closest to her. ‘The most obvious impact is on my husband, David, because having an unwell wife is no easy thing,’ she says. ‘He is up before I am, and my medicines and a drink are waiting for me when I wake up. He does most of the housework and cooking, as well as working full-time. And that’s just the physical side. ‘David has had to get used to the idea of outliving his young wife, which is a rather extraordinary thing to have to do.’

Because of hospital stays, the couple are not able to make short-term plans. But not knowing what Ruth’s health will be like in a few months means that they cannot make any long-term plans either. Ruth’s parents and siblings also feel the effects of Ruth’s illness. They had to adjust their lives while she was growing up. She says: ‘I think it’s been particularly hard on my sisters. My older sister Sarah had to grow up faster than she might otherwise have had to do. When I would go into hospital, my parents would often be with me while Sarah and my younger sister Esther would have to stay with friends or family.

‘Also, I got more attention from people outside the family because I was the one who was unwell. Growing up in the shadow of my cystic fibrosis was hard. My parents have had to cope with all the physical and emotional challenges that come with looking after an ill child.

‘But,’ she adds, ‘there have been ways in which cystic fibrosis has had a positive impact. It has brought us closer as a family. We’ve become used to hospital rooms, which have been the setting for tears of sadness and of laughter. We have become used to talking about death and dying and have a greater awareness of how precious life is.’ While Ruth knows that life is precious, she still goes through difficult periods where she wonders what the meaning of it all is. She often struggles with what she calls ‘the obvious smallness of my life’. And much of her average day is spent just trying to keep herself alive. She explains: ‘It can be difficult to believe that there’s anything useful or worthwhile in my life.

‘I have often wanted to give up. In difficult moments, I have prayed to God to just let me die.’ But ultimately it is Ruth’s belief in the existence of a God who hears her, cares for her and has a plan for her life that helps her to live with cystic fibrosis.

‘Believing in God changes everything. Without him, cystic fibrosis is an unlucky mistake or a cruel twist of fate – it’s a death sentence,’ she says. ‘With him, I see it as part of a loving plan for my life and a reason to look forward to eternal life.’

It is in the context of a relationship with God that Ruth is able to have an understanding of the worth of her life while still feeling the frustrations of living with a chronic illness. She admits that she has ‘definitely been angry with God for choosing me to have cystic fibrosis’. She continues: ‘When I see my peers enjoying good health, pursuing careers, having babies and doing the things that they want to do, I’ve felt that life is deeply unfair.

‘But I’ve learnt that the best thing to do with my anger is to express it to God. In any relationship, unexpressed anger can lead to bitterness and the best thing to do is to talk about it. My relationship with God is no different.’ Prayer is something that Ruth believes changes her, rather than changing God, or her situation. ‘When I bring my anger to God, I begin to see the world in the way that he does,’ she says.

‘My belief helps me to know that my illness isn’t the biggest thing. I’m often struck by the words of Jesus as he hung on the cross. Even in his agony, he cares for those closest to him, forgives those who have wronged him and puts the plan of salvation above his own personal comfort.’

For Ruth, her Christian faith is a reminder that her life is part of a bigger plan, one which gives her life ‘meaning and purpose’. She quotes a verse in the Bible which says that ‘all things work together for the good of those who love God’, and adds that ‘life without that promise would be bleak, and life with an illness even more so’.

She concludes: ‘God is a loving Father who sees the bigger picture in ways that I can’t. Through this illness, all my family and I have learnt more about him and seen him work in gritty and glorious ways.’

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