Earlier this year, I was lucky enough to find myself in Italy after my first hospital admission of 2016. A little part of me even feels sad that I say first in full confidence that I knew there would be more than one because every year since I was 9 has followed the same general pattern. The opportunity arose and like a bee to honey, I went straight for it.
Cystic fibrosis or ‘CF’ for short, is many medical terms. But more than anything, it’s getting on that plane and going on that trip if you think you can, with or against medical advice. It’s focusing on NOW, putting all your eggs in one basket “just in case” and hoping either way that you have enough days to chase them one by one. CF is growing up before your time or never growing up at all. You know this from early childhood and right through adolescence but it doesn’t resonate until that first gruelling hospital stay. I don’t mean the one your parents remember when you were four, I mean the one when you were 13 and wondered how you would respond to your friends curious questions after you returned from 2 weeks of having not been in school. I recall one of my granddad’s great sayings (he had many) “If you don’t have what you like, get to like what you have!”. I really did want that motto to work for me and so I tried that for a while. I tried to like missing winter tests and awkward biology experiments where the rest of the class would partner up and I would look around wishing the day would be over and the ground would swallow me. I let on that I was fine with my exemption from P.E because I was fragile, but of course I was not. I didn’t like sitting on the balcony upstairs doing homework whilst everyone my age was fit and having fun. I was a teenager with all the paranoid and self conscious thoughts of a regular teenager except I was living a very irregular teenage life. Orkambi now could mean kids don’t have to go through this anymore. It could allow them their teenage years, their days of mischief! The ones I was robbed of and can’t get back.