Since before I can remember I have always been aware that I was different. Things that seemed normal to me I soon realised were not normal for other kids. At primary school me and my sisters would be called up in the middle of the canteen to get our enzymes (tablets we need to take with food), my Mum would line us all up on her double bed to do physiotherapy at night, we took days off school to visit the hospital in Belfast to get our lung function checked.
Even though this awareness sometimes made me feel uneasy and upset me, I rarely believed that having Cystic Fibrosis would stop me from living the life I wanted to live. And it hasn’t for the most part. When I tell people what my daily routine includes (or should include, I’m a bit naughty sometimes) or about the disease I was born with, I can see the pity in their faces. This doesn’t bother me because it’s all I’ve ever known.
I was diagnosed with CF when I was a few months old. My parents were in their twenties and understandably terrified by the diagnosis, not having heard of the disease before. Thankfully there was no Google back then because I’m sure that would have led to full blown hysteria and they somehow managed to get on with it.
I have always been one of the lucky ones. After the diagnosis and once they had my medication stabilised, I thrived like any normal baby. In fact, I was an absolute tubster or a ‘barrel’ as my Mum lovingly recalls. Children with CF often struggle to put on weight because their body isn’t equipped to absorb nutrients effectively but thankfully that has never been an issue for me.
My two sisters followed soon after I did and they too were diagnosed with CF. Having three girls with CF is extremely rare as parents who are carriers of the CF gene only have a 1 in 4 chance of having a child born with CF. Not exactly a gift to be grateful for but again, they managed to get on with it.
We had a very normal childhood despite the odds that were stacked against us. When I was born, the life expectancy was around 15 yet my sisters and I never had to endure any serious hospital admissions when we were young which was very lucky. We took part in everything; all the Sports Days, school trips, holidays, without any trouble at all.
I was 11 when I was first hospitalised and 13 when I contracted Pseudomonas. I’m almost positive that I contracted it while in hospital because patients had a common room where we could all socialise and I suppose feel a little more normal. This is shocking to think back on now because cross-infection is regimental in hospitals these days!
The hospital admissions became quite commonplace during my teens but yet I didn’t fear CF, just the needle that was used to thread the IV line up my arm that administered the antibiotics. Hospital was a time to get spoiled, avoid schoolwork and binge watch TV shows.
It wasn’t until my sister Amy was diagnosed with CF related liver disease that I understood how CF could take something from us, the family that managed to do so well for so long. Amy was the middle girl, the dark eyed and dark haired beauty that was the gentlest of the three. She was a year and a half younger than me and we clashed constantly over the years, like chalk and cheese in so many ways.
Amy was 11 when she started showing symptoms of liver disease which were horrendously scary to witness and I can’t imagine the fear she must have experienced. To be honest, it’s very difficult to think about how she must have felt because it riddles me with guilt and sheer despair.
She managed to battle liver disease for 9 years. Suffered countless surgeries and procedures to manage the varicose veins in her oesophagus that were continuing to bleed. Flying back and forth from Birmingham and seeing doctor after doctor. As if life as a teenager wasn’t hard enough, Amy had a whole mountain of crap to deal with more than anyone I know.
And then we lost her on a rainy Friday morning in November 2010. She was 20 years old.
Our family has never been the same since and we have not tried to get on with it. We have felt it all. Our loss has consumed us and defined us forever. I miss her every day and I am still baffled by how the grief can come and go in uncontrollable waves. The emotion I feel the most is probably guilt. I think this is normal. Or I hope that it is.
Since her death I have graduated from University, watched lemurs dance between trees in Madagascar, saw a rainbow rise over Uluru, followed cheetah prints on safari in Africa, walked through the jungle around Angkor Wat, rode horses through Cuban tobacco fields. I have refused to let CF define or hinder my life.
In many ways, not letting CF define me has improved the quality of my health. I strongly believe that the mind has so much control of the physical body and that if you put your efforts in to living an active, happy, fulfilling life then your body reacts to that. I am however also lucky that I have a strong body that has been able to withstand a lot of medication and countless infections.
I contracted a nasty bug called cepacia when I was 20, the bug that no CF patient wants to get for it is extremely resistant to most antibiotics. The bug resulted in me not being able to come in to close contact with my sisters for years. I wasn’t allowed to hug Amy until they knew that she would be passing away.
My youngest sister Shannon has since contracted cepacia more than likely from myself because after losing Amy we needed each other more than ever. She was 17 when Amy passed away and dealt with a lot more than a typical teenager had to like Amy. Her bravery still astounds me.
I’m 27 now with lung function that sits at around 78%. I was hospitalised in June for the first time in 3 and a half years. I am incredibly lucky. Right now my life is good, I go the gym 2/3 times a week, I go walking with my friend every week, I try to be as active as I can but not just because I know it helps my health but also because being outside and amongst the world makes me happy.
The future can be a scary thing but yet I don’t know another person my age who isn’t afraid of what the future holds. None of us knows what’s around the corner in life so we have to enjoy what’s happening right now. Look around us and figure out if we’re living the life we want to live and if not, then knowing we have every power to change it. I know this because I’ve had a 27 year headstart.