I sat on the old park bench with my two incredibly lazy dogs and people-watched. I saw you run around, laughing, smiling with your adorable son. I’m guessing he is around four. Both of you, in hysterics over your game of peek-a-boo. It made me laugh. It is one of those perfect sights that makes a young woman like me think of herself as a mother one day. It also made me think that you must need boundless energy to keep up with your giggling little munchkin. As soon as he caught sight of my little balls of white fur he ran straight over, you, a few footsteps behind, trying to keep up. He insisted on hugging both of them and asked me if they were twins. Then as I was responding to his many questions he coughed, abruptly and intensely. You were unfazed and apologised insisting he isn’t contagious.
He has “Cystic Fibrosis” we both stated in unison. We spoke about Orkambi and research and you told me about how you encourage as much physical activity as possible. You were so optimistic and enthusiastic, it was contagious. You made me think of how different life is now for people being born with Cystic Fibrosis. A far cry from my mum’s birth and odds in the seventies. You brought me back to a place I hadn’t been in a while. I am in this constant battle of emotions. I am torn between feeling resentful that my mum never lived to avail of the numerous treatment options out there today and also incredibly grateful that so many others lead such different lives and will have different fates. Most days, I focus on the positive. The endless emerging therapies and the stepping stones leading to an eventual cure. Some days, every so often though, I wallow. I wallow in that dark place where those options didn’t exist. Where the light at the end of the tunnel got further and further away from us and every passing day our hope diminished. You know what though? That’s okay. Grief is a complex thing.
Thank you, kind stranger, for the reminder that now, there is so much light. So much hope. Even in my dark spaces, people like you interrupt my solitude with your bright lights and music. I hope your son has a life filled with light.
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.
My PhD has officially started. I am nervous. I am excited. I am totally petrified. Over the next three years I will research the Cystic Fibrosis lung microbiome. Three years from now (fingers crossed) I will leave Queens University Belfast much more informed about the subject that has captivated me since the beginning of my Science degree. I will study, in detail, the disease that plaguges my brave mother everyday. The disease that she fights, battles and sometimes even conquers.
I never really thought about the fact that I might have a unique insight into the research. A rare perspective as I get to see the condition and its many implications everyday.
I am eager to get started and throw myself into it. My entire academic life has lead up to this point. The time is now. This is not a dress rehearsal.
‘Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning’. –Albert Einstein
My mother’s condition has influenced every part of my life, which I hate to admit. I don’t know why I hate saying that out loud but I do, I hate it. I hate myself for letting that happen but it did and now I am grateful. It was because of my mother’s condition that I developed a keen interest in science, medicine and pharmacy growing up. I was the little kid in the white lab coat setting up my test-tubes and bandaging up my teddy when the other kids were…well whatever the other kids did. I would diagnose my dolls with collapsed lungs and prescribe them a course of IV antibiotics if I saw fit. This was my play time. This was my life. This continued well into my teens when my interest became more serious and persistent. After secondary school I decided to study Science at third level. I didn’t really have a reason why, it just intrigued and to be honest, at that point, anything in the scientific or medical field probably would have interested me. I enjoyed my studies, I had fun learning and growing as a scientist but no area of science or research ever jumped out at me. I had been studying Microbiology for two years and there was no area I felt passionate about. This was rare amongst my impressive peers who were mumbling about some disease or protein I had never even heard of. I felt like the odd one out, I didn’t fit. Maybe science wasn’t for me? I like it but I don’t have any specific aspirations.
This all changed when I had the opportunity to work at a Cystic Fibrosis research lab. I would be studying and researching a subject I am well acquainted with. Actually, I believe my stint in the CF lab was the making of me as a scientist. I was now immersed in clinical papers about something I was passionate and serious about. I could finally see science beyond some facts and figures. Now I saw the human side of it. Now I knew that my research meant something to a real person, to real people. They affected a real family. Real people with real feelings whose entire life revolve around this condition I am researching, weirdly enough, I was one of those people. This was the day I stopped hating Cystic Fibrosis and decided to work with it.
After completing my degree I decided to pursue a research PhD in Cystic Fibrosis. I can’t ever see myself being as compassionate or dedicated to anything else. I want to make a difference. I want to make an impact. I want to reassure my young self that even though everything seems unfair and bleak, it won’t always be that way, there is someone out there working for a change.
‘If there is no struggle, there is no progress’. -Frederick Douglass
**You can follow me on twitter to follow my mum and I’s journey @Christina1Kenny**