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 and days off school were taken to visit the hospital in Belfast to get our lung function checked.
Even though this awareness sometimes made me feel a little uneasy, 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 flash of pity in their faces. This doesn’t bother me because not only is it a natural reaction, 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!! They learned as much as they could and managed to get on with it despite the uphill struggle that lay before them.
And I was 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 me and tragically they too were diagnosed with CF. Having three children 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 much trouble at all.
I was 11 when I was first hospitalised and 13 when I contracted Pseudomonas, a common infection that a lot of CF patients eventually contract. 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 us 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.
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 things got much worse. She battled hard but on a rainy Friday morning in November 2010, we lost Amy. 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 decided to live as much as I could. I 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. But I am 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.
63 Comments
Alex Donnelly
6 years agoThank you Una, it feels good to talk about these things xx
Una McCrory
6 years agoBeautiful writing, pared back to the loving soul that you are. Very moving and humbling
Alex Donnelly
7 years agoThanks so much for taking the time to read it Helen and for the kind words. It was a very personal post to share but I'm so glad I did! x
Helen
7 years agoThis is such a powerful blog post, Alex. I'm so sorry for the loss of your sister. X
Alex Donnelly
8 years agoThanks so much for the lovely comment Tracy! Really glad you liked reading it :)
Tracy
8 years agoWhat an excellent piece of writing which broke my heart! I admire your honestly and your determination to have a fulfilling life xxx
Alex Donnelly
8 years agoThanks so much for giving this a read Donna, means a great deal that you enjoyed it! Very happy to have met you.
Donna Blythe
8 years agoAlex, I knew there was something special about you first time we met. I'm so pleased our paths crossed.
Cat McG
8 years agoAlex, im completely blown away by this. You have always been a true inspiration and I am incredibly lucky to have you as a friend. It is also a lovely tribute to Amy who we all miss and treasure such great memories of. Keep up with that determined mind and love for life, along with the equally inspirational Shannon. We could all learn something from your approach. Keep sharing your insights and experiences, i totally agree....a world famous author in the making. See you soon xxx
Alex Donnelly
8 years agoThanks so much for reading Orlaith and for such a lovely comment. I know, it's such a difficult thing to manage and I don't think a lot of people knew the extent of her symptoms, she was so so brave. Hope you're keeping well over in Scotland and thanks again :)
Orlaith Conlon
8 years agoVery inspirational story Alex. Your courage is truly outstanding. I work in gastroenterology and varicies are horrible especially for someone so young! I'm sure your sister would be very proud of you x
Alex Donnelly
8 years agoYou know just as well as I do Emma that life can be incredibly tough sometimes, it's good to talk about it though and share these things. Thanks so much for reading and the good luck! I'll make sure and keep posting :)
Emma Daly
8 years agoYou are such an inspiration to everyone Alex, an emotional blog to read.. Truly touched reading this and will continue to do so ????? good luck with your next venture I hope it will be one of many!! Xx
Alex Donnelly
8 years agoThanks so much for reading Kat! Lots of love xx
Kathryn Cheshire
8 years agoWhat an emotional blog, Alex, beautiful writing. Lots of love always xxx
Alex Donnelly
8 years agoThanks Rach! Can't wait to see you in a few days!! Xx
Rachel Gill
8 years agoAmazing read, love you for you x
Alex Donnelly
8 years agoThanks Ave! It was a bit scary but I can't get over how positive everyone has been, it's been so lovely! Cheers for reading too and so glad you liked it :)
Aoibheann Hughes
8 years agoBrilliant blog post Alex - you're really an ispiration. It takes guts in this wee country we live in to be open about your feelings, so it's very refreshing to read your blog. Please keep posting because I'll keep on reading!
Alex Donnelly
8 years agoThanks so much for reading Slipper!
Alex Donnelly
8 years agoThanks for reading Stewart, really lovely to see such positive feedback. Need to get down to see this new addition soon! Will get Moff to coordinate a wee visit soon :)
Alex Donnelly
8 years agoThanks so much for reading Tyrone! Hope you're well :)
Alex Donnelly
8 years agoThanks so much for reading Anne!
Alex Donnelly
8 years agoThanks Carl! I know I can't get over all these lovely comments - all so positive! Cheers for reading :)
Alex Donnelly
8 years agoAw Orlaith would ye quit! So happy you liked reading it though and thanks so much for sharing - so lovely xx
Alex Donnelly
8 years agoThanks so much Frances for the lovely comment - so many memories up in Lindseys Hill! I hope things are well with you and the family and would love to try and catch up sometime I'm home. Thanks again for reading!
Alex Donnelly
8 years agoThanks so much for reading MJ! So nice to think you guys can read my ramblings half way across the world! Lots of love to you all, cuddles to Sitty and Taj xx
Alex Donnelly
8 years agoThanks Laura!xx
Alex Donnelly
8 years agoThank you so much for the lovely comment Helen - you were such a big part of our childhood and we were so lucky to have you. Thanks for reading!
Alex Donnelly
8 years agoThanks for reading Kate! And really appreciate you sharing as well, such positive feedback! xx
Alex Donnelly
8 years agoThanks Terri, we had a great childhood running about! Thanks for sharing as well :)
Ciaran Kelly
8 years agoAlex your an absolute legend. Keep the blogging going
Stewart
8 years agoThanks for sharing Alex, must have been very hard for you and your family but I admire your attitude to life. God bless
Tyrone
8 years agoBeautiful writing Alex - You have always been amazing! Take's alot of gut's to share such personal tragedy and thoughts. I really wish you all the best :) with love x Tyrone.
Anne Rutledge
8 years agoBeautifully written Alex and thank you for sharing. You are an inspiration.
Carl
8 years agoReally good read Alex, your blog is really interesting overall, great to see so many nice comments. Keep in touch, your cuz. C
Orlaith Cullen
8 years agoYour an amazing person Alex and an inspiration to all, thank you for sharing xx
Frances Donaghy
8 years agoAlex your story is an inspiration to all those suffering from cf. I have very fond memories of you growing up and so glad that you are embracing life the way we all should. Let everyone's motto be live for today and love the gift of life. Take care and next time you're in Armagh we'd love to see you.
M Arsenault
8 years agoWonderful piece Alex. Thank you for sharing your story, keep writing! Xxx big love from your Exmouth family :)
Laura
8 years agoLove it Alex good for you honey xxx
Helen McLaughlin
8 years agoYou are brilliant in every way Alex, an inspiration to so many. Being positive has always been an important part of your life, which hasn't been easy. Well done. Lovely to have shared many experiences with you Amy and Shannon over the years. Keep up the writing , an author in the making.
Kate Hughes
8 years agoSuch an amazing and inspiring blog Alex, well done u! Xx
Terri McAleer
8 years agoThis is such a touching read Alex, it brought back so many memories. CF has never got in the way of any of the craic we all had. I hope this reaches many xx
Alex Donnelly
8 years agoAch thanks so much for reading Nicola! xx
Nicola Hare
8 years agoAlex you're a true inspiration. You should be so proud of yourself! Lots of love xx
Alex Donnelly
8 years agoCheers Tangney! Hope you're keeping and thanks so much for reading! x
David Tangney
8 years agoLoved it Alex, so much admiration! All the best X
Alex Donnelly
8 years agoLove you too Helen! Thanks for reading xx
Alex Donnelly
8 years agoGrainne it makes me so happy that you enjoyed reading this! CF is a bumpy road but it has allowed me to see and appreciate life in ways so many others take for granted. Hope your husband is doing well, sending lots of love xx
Alex Donnelly
8 years agoAw thanks so much Sammy! Such a lovely comment :)
Alex Donnelly
8 years agoOf course I don't mind you sharing - so touched that you'd want to! xx
Alex Donnelly
8 years agoDon't think I'm too brave Keelin but it was a wee bit scary sharing this! Thanks for giving it a wee read :)
Alex Donnelly
8 years agoThanks for the lovely comment Kimberly :) would love a catch up with you girls soon xx
Helen
8 years agoI'm so proud of you,Alex.. love you xx Helen
Grainne
8 years agoHaving a husband with CF has made this an even more beautiful and inspirational story. Well done for sharing, wishing you continued good health and happiness for many years to come. Grainne x
Sammy
8 years agoAlex ur amazing I am reading this with tears in my eyes. Your positive outlook is outstanding and I really admire you for it. Your amazing ?
Ciara Rafferty
8 years agoAlex this was an amazing read.. Hope you don't mind me sharing it x
Keelin
8 years agoWell done Alex, you are so brave! ?
Kimberly
8 years agoSuch open and honest writing - amazing Alex. Your doing great xxx
Alex Donnelly
8 years agoThank you Rebecca :) so chuffed you like it x
Rebecca Leemon
8 years agoThis is amazing Alex, well done. So inspiring x
Alex Donnelly
8 years agoThanks so much for reading Caroline! It means a lot that friends can read this :)
Caroline Monaghan
8 years agoYou are amazing Alex?A real inspiration your parents and family must be so proud of you.