Living with an incurable disease
A start with a bad omen
A couple of days after my birth I was diagnosed with Cystic Fibrosis, a genetic disease that most critically affects the lungs. The doctors gave me a life expectancy of about 20 years. With that diagnosis the odds seemed to be against me already at the outset of my life. There were doubts, if I would ever be able to live independently and without being in need of assistance and medical treatment, whether I was ever going to be able to graduate. Chances were slim that I could live a healthy, normal life. The list of „well, maybe you won’t be able to…“ by far outnumbered the list of „sure, you can“.
… I am 30 years old, happily married to a wonderful man and I live and experience a remarkably interesting and fulfilling life. I am amazed at the list of things I have been able to do so far, a lot of them regarded as being “impossible”.
However, I have no doubt that my life could have taken a totally different turn…
Into my parents’ seemingly unending sadness, words of hope were spoken. When I was around one and a half years old, a friend of Mom told her about Jesus Christ and that He is the only one who knows every person‘s future.
The turning point
Soon after that, my parents accepted Jesus as their Saviour (i.e. they invited Him into their heart with a simple prayer and decided to follow Him, and therefore had peace with God). What retrospectively sounds simple, became a turning point, not only for my parents, but also for us as a whole family.
As I grew up, I learned about Jesus and wanted to be a child of the living God. I too, invited Him into my heart. By that a whole new perspective was opened to me: Jesus took away my fear of death and my future. He gave – and has given me since – hope and confidence in His good plans for me. Indeed, He traded hopelessness with exceeding joy.
Quarreling with God
Yet, my life with this disease has not always been smooth and easy. Although I had been blessed with a relatively unproblematic course of disease during my childhood and as a young adult, there were times, I severely doubted God and quarrelled with my fate; – especially in more challenging phases or when bad results were shown for my lung function. Or when I was fed up with the whole sickness stuff.
For the past two years, my health condition has started to decline. My lung capacity dropped drastically from 90% to 60%, then even below 60%. Many antibiotic treatments followed. Many heart desires and dreams are yet to be fulfilled.
Everyone experiencing hardships knows, that mere religious verbiage and kindly meant advise don’t help at all. But it’s because of this hope and peace I’m recording my story here on mystory.me, a hope and peace that transcend my understanding and are not at all self-made.
I have realized that it is always in these dark moments, when Jesus seems to be closest to me. I pour my heart out to Him, casting my sorrow, frustration, despair, anger on him. It is amazing how fitting and specific his answers are in these moments. These encounters with Him are powerful and have become the source of my life. I am deeply grateful that Jesus has become my purpose, my closest friend and the Light in my darkness.
The story is not over yet… and asks to be continued! For God promises: ",I know the plans I have for you,' declares the Lord, ,plans to prosper you and not to harm you, plans to give you hope and a future.'" (Bible, book of Jeremiah, chapter 29, verse 11)
I encourage you to get in touch with Jesus, no matter what situation you are in. He says: „Just call me when you are in trouble. I will help you!“ (Bible, book of Psalms, chapter 50, verse 15).
Are you affected by cystic fibrosis or know someone who is? Or have you been touched by my story? I'd be happy to hear from you.