Most of the time I feel empowered by my life experience as a researcher. I feel like it gives me an insight that others will never comprehend.
It enlightens me in ways others will never be privy to. It makes me more well-rounded.
I can help educate others into the ins and outs of living with Cystic Fibrosis. What it looks like. What it feels like.
However, on that random day my emotions take over. I can’t remember what professionalism looks like. I just sit there and nod. Inside, I’m dying. Normally, I can separate my own experiences from formal meetings, not today. Today I swallow hard and fight back the tears. I want to scream. I’m not sure why today is different from other days, I just know it is. I want them all to stop. Stop talking. Just stop. Every word wounds me. Every single word leaves a gaping, oozing wound. Nobody has noticed. They don’t notice I’m bleeding. They are oblivious to my pain as I sit there and nod in agreement. I sit there, silently bleeding. It’s only 9am and I am already empty. I have nothing left to give. Nothing can comfort me. It’s 9am and I am wishing it was 6pm. I’m wishing I could go home and cry. Go home and mourn. Go home and tell my dad I just can’t do it. Go home and grieve.
Then, suddenly I recall why I’m here at all. I recall her strength, her courage, her unwavering optimism and I suck it up.
Lab is calling, research waits for no-one.
The hope. The optimism. The positivity. The enthusiasm. They were infectious. They were palpable. Everyone I spoke to spoke with genuine sanguinity and buoyancy. It has been an intense few years for Cystic Fibrosis. It has been a part climax to years of tireless research and pain-staking investigation. The European Cystic Fibrosis Society conference 2016 reflected the sunny few years CF has had. You could feel it. You could see it. You were part of it. That was the atmosphere I experienced and I loved it.
I was constantly taking notes and learning as I went along. I filled a whole notebook just from attending symposiums on microbiology and pathophysiology. However, the places I learned the most included coffee shops, lobbies and even foyers. This is where I part-took in conversations in which experts enlightened me and educated me. I learned about social policy, law, the cost of research and the importance of public participation. Many of which I had not considered important for my work. How wrong I was. Aside from learning about the benefits of probiotics and the survival mechanisms of pseudomonas aeruginosa I learned a vast amount about how in the dark I was regarding non-microbiology issues. I had been so blinded by the science for so many years that I was failing to understand so many other issues surrounding Cystic Fibrosis. I spoke to members from the various CF charities around the world and talked about the greatest issues they faced as an organisation. I spoke to consultants and nurses about patient care and the struggles they face each day. I learned about the ethical struggles of designing research. I learned more than I ever anticipated and from people I had never even considered learning from. Now, I realise in order to be a well-rounded, informed researcher you need to consider everything, not just your own research. You need to be educated, you need to link in with other people and most importantly, you need to know what the patients need.
I felt a little more informed with each passing day. As someone who recently lost her best-friend to the disease the conference was both incredibly heart-warming and also tinged with sadness. I heart people speak with great excitement about the constantly evolving CFTR-modulating drugs that are changing the lives of so many and yet I couldn’t help but think ‘why didn’t she get to experience all of this?’ I was both over-whelmed with happiness for the many suffering out there whose lives were changing for the better and also almost jealous. I was envious of their hope because in some respects I had lost some of mine. However, in other ways, I found new hope and the conference ignited that optimism that had been harder to find lately.
As, the incredible Snezana Bojcin, who won ‘Patient advocate of the year’ award at the conference said ‘we are the heart and the lungs of the same machine’.
My mum once told me that anything worth having would never come easy. She was right. She was always right.
It would have been easy to escape it. Run away. Quietly move on. Silently drift away, enter a new world. I could have immersed myself in a different world. A world that isn’t as close to my heart as this one. I could have had a job, not a passion.
I could have spoken about my job like it was just that, a job. A nine to five. There could have been it and me. Two separate entities. Two uninvolved things.
I chose not to. I chose to have a passion. I chose not to let go of that passion. I chose to have a career that was woven into every fibre of my being. I swallowed hard and made an instinctual choice. A tough one. No hesitation. No pregnant pause. I took the road that would inevitably be filled with questions and statements that will make my heart drop. The road I chose might sometimes be dark. It will sometimes be lonely. I might be scared. I might even feel broken at times and lose sight of why.
But as my mum once said anything worth having won’t come easy. A career in Cystic Fibrosis isn’t a job, it is part of who I am at my core.