To begin, I am the girl with multiple, less common complexities. I take 60+ pills a day and vape more than your folks did in pubs before the smoking ban. I inject just for kicks (jokes, I’m diabetic). At night, I am fed through a tube in my stomach and antibiotics are not just a crash course of amoxicillin but rather an intravenous cocktail of aggressive antimicrobial drugs via a method often used in cancer patients.
For most people at least, breathing is an effortless bodily function. It is not effortless for me and it gets increasingly difficult as I age.
To give an idea of my character, my dad said something about me once, that I’d go to “the opening of an envelope”. It wasn’t too long after that conversation with him that I found myself destined for Japan with probably less than a hundred quid in my bank account and a heavily bleeding pair of lungs. I was in A&E (again) with less than twelve hours to go until my flight. Typically, they admitted me and the doctor couldn’t see me anyway. I politely told the junior to inform my consultant that unless he too was boarding a plane to Tokyo (in at that point 9 hours), I would see him on my next visit. He said my consultant phoned and said to let me go as I knew myself best. And he was right, I did know. I managed fine and enjoyed my trip.
Of course, I didn’t know at the time of booking my ticket that a tonne of crap was going to try and prevent me from going, and it wasn’t the first and it wouldn’t be the last time. But I didn’t let it because being honest, after I piss and moan for a bit, forcing the chips up when they’re down is the only way I know how.
Fast forward and rewind to two weeks ago, I struggled to last 20 minutes on a treadmill at gentle pace without incline and last week I climbed a mountain, both literally and figuratively. That’s a small milestone for me in terms of my health as it was ten times harder for me than the twenty-two others that trudged on like mighty Trojans ahead.
“A light walk” said Alan referring to the mountain we were about to hike on the last event of the year after spending the morning on surfboards in the Atlantic Sea (I sat that one out as I couldn’t risk getting my port wet and infecting it). Yeah right. It was not a light walk (it was a trap!). I did not find this to be a simple task and I would not have had any satisfaction if it were. It was a contest of my determination and will and more than anything, that is how and why I made it to the top. But instead of my lungs being a daily limiting factor, they are the motivator in what keeps me going.
Exercise is a key part of being fit and healthy. It is an endorphin release with greater power than any drug when the heart gets pumping and improves oxygenation and overall lifespan to those who make it a regular habit. It is fair to say that exercise is as important if not more so than having a good breakfast in the morning, but I remember the days where it was totally discouraged for people like me with cystic fibrosis. In my years of secondary school, I was instructed to sit on the balcony during P.E classes while I watched my peers actively participate.
Having a chronic primary lung disease, I’m not exactly blessed with mounts of energy. I’ve been through a lot in my life and I am constantly learning and growing, through friendships I’ve made and decisions I’ve taken on my own when the odds were stacked against me.
Before the final event dawned which was a weekend in a holiday village in Castlegregory, I was admitted to hospital as my usual luck would have it when I have plans that I’m looking forward to. I felt hard-done by as my whole life has been one thing after another passing me by and now it was happening again, but I put the work in and upped my game in those few days to get out of there, and I did, barely. It meant I had to take half a hospital home with me to equip me for a further two weeks while I finished the course of IVs, but I was happy to do that and lucky to be given that option at all which meant a lot to me as I still had a chance of going on the trip. I was fortunate in that a new antibiotic accounted for my ‘bounce back’ quicker than I’m used to. I don’t know if that’s coincidence or evidence that everything happens for a reason but for the sake of looking on the brighter side I’ll go with the latter. I didn’t think in a million years I’d drag an IV with me through the Kerry mountains. I didn’t even know I could take breaths that deep and feel as good as I did when I drew them.
Before September 2016 I had never been surfing, I had never worn combats or held a paintball gun, I had never walked through caves with a light on my head and if you asked me had I been go-carting, I’d have said “No, and I don’t do bumpers either. I’m too easily injured”. I thought “but I can’t swim”, “I don’t know how to surf?” or “I can’t do this” and “what if” that. But it never mattered, it’s not that kind of club and I figured that pretty fast. I couldn’t always lift my feet onto the ground so easily, there were days when I had to be carried and lifted into the car to go somewhere so the year has been a remarkable hindsight of reflection and achievement. For every second thought I had, someone in the club was there to push me on and tell me that I could do it. I knew, but I am certain now that I can and will do anything I set my mind to.
As human beings it is our natural instinct to be afraid of the unknown and it’s easy to be put off something when you are afraid. But what I realised is that it’s not about who can fly their kite the highest, it’s about participation and involvement and making new and lasting connections that you can carry through for life.
You don’t have to try to be anybody. We are all different and what I love about the OC so much is that it embraces that diversity and unifies it. We have international students from all around the world who get to see the best of our beautiful country and take memories and stories with them to their foreign homes when they leave. We have students like myself with disabilities and students that just come to be a part of something and feel comfortable in their own skin. They can do that in the club, it’s like a hidden personality emerges, and it’s a great feeling to recognise that kind of growth.
Being in the club has helped me to identify my own strengths and weaknesses and want to build them up. In doing so, I have met the other version of myself. The fearless, the stubborn, the never-gonna-see-me-quit’ er, and last week confirmed that for me on a personal level.
Over the years of its running. the club has raised more than €13’000 for DEBRA Ireland, a charity which aids and supports people with a devastating skin condition called Epidermolysis Bullosa (EB) where the skin is painfully fragile to the touch and easily breakable. It is rare and genetic and effects roughly 1 in 18’000 babies born in Ireland.
I didn’t know what EB was ‘til I heard we were donating the profits of our T-shirts to DEBRA. I educated myself and quickly became aware of the heartbreak it causes children and their families. People have always been generous to give to Cystic Fibrosis Ireland, and in some way or another, here and there, I have been awarded by that. I am not a ‘sufferer’ as I refuse to ever succumb to that description of my body’s endurance but I do know how it feels to suffer and I know how helpless and lonely and restrictive it can be. It is nice to be able to give something back and make a difference in somebody else’ s life, and it’s important to me to feel like I have contributed in some way to the ease of somebody, somewhere, in their battle.
The OC have selflessly been doing this for fifteen years no matter how much or how little was to be made and I think that really puts it’s purpose into perspective.
Every year the club recruits ‘new blood’, which is how I ended up being so involved. Only for the OC I couldn’t say that I’ve loved my first year of college as it gave me the opportunities to meet new people. I’m glad I signed up at that day and went to the new blood meeting where I became an addition to the OC council. From there on is where my adventures with the gang kicked off and I would encourage students to go to the next meeting in September. I never had a dull day, whether it was a day for sign-up, getting texts out or ordering T-shirts, there was always something to do and we worked as a team to get it done. I would really love to see some more Irish students avail of what the OC has to offer.
Membership costs a fiver and events are generally held on weekends at the beginning or end of every month. The events focus in a lot on water activities but involve a range of pursuits throughout the year to suit everyone! Fine, hearty rolls from Ivan’s and bottles of water, biscuits and crisps are provided on all events and bus transport is included. Emails and text messages are sent out well in advance and notices are put on all social media accounts. Visit the Facebook page for all the latest updates.
And if you haven’t heard of us, keep an eye out!