I read somewhere recently that every time you remember an event, you aren’t recalling the actual event. Instead, you are recalling the last time you remembered it. That killed me. Does that mean every time I think of you, I am just thinking of the last time I recalled a memory of you? There is something so removed, so aloof, so unnatural about that. I want to believe that each time I think of you, I think of you exactly as you are, as you were, just you.
People tiptoe around you now. Not everyone, just most people. They act like we should pretend we have forgotten because it is easier than recalling you and your death. I hate it. I want to remember you, daily. You were and still are the biggest influence in my life and that hasn’t changed just because you aren’t here. I want people to ask about you. I want them to the fun, beautiful, bright memories of you that we all share. I want them to acknowledge you. There is no elephant in the room. You are gone. Your influence, however, will never be gone, not for me.
You might just be my favourite and most inspiring subject.
I guess I have been dealing with the fact that you haven’t met him and that you never will. That is a real shame. He has that annoyingly brutal honest bluntness that you had. He also has that absurdly self-deprecating humour that you adored. He’s not what I expected but he is exactly what I think everyone wants in another human. He has your tenderness. You would like him. I think, in time, you would love him. I don’t even know why I am bothering to detail all of this to you. You see it all now. You’ve seen him, seen us.
To quote you ‘I miss ya kid’.
Love and love again,
“When did your mum tell you she had CF?”
I’m not sure she ever did or, perhaps, she constantly did, it is hard to differentiate these two things. From the moment I could walk, before I even uttered a sensical word I knew not to touch her medicines or equipment. She told me they were important for her health but dangerous for mine. She would sort through her tablets, explaining what each one was for. That stayed the same most of my life. She would explain that she had to be admitted to hospital sometimes because she is “different to other mothers” she has “CF” and that means “sometimes she is sick and she has to let the doctors take care of her” and this was enough for me. It was enough to me until I was 6 or 7 and my uncle, who also had CF had just received brand new lungs. He was so sick just before the transplant, unlike my mum who was running around after me and swimming every week.
She thought this would be his big break. His freedom. His life. We all did. We rooted for him. A few weeks later he died.
I couldn’t understand any of it. “How could he die? The operation was supposed to make him better? How could this happen?” It was during this period I started to think: “If he died, could my mum die too?” She explained that he was much more ill than she is but there is a serious probability that one day, she too will be that ill. Initially, I was so shocked I couldn’t ask anymore questions, despite my parents best attempts to openly talk about. Eventually, I just stopped believing it. She was too strong, too healthy, too stubborn to ever be that ill.
There were moments that made these words echo in my ear like a cruel joke. Moments when I saw her slip through my fingers and barely just make it back.
Eventually, as more of our friends and family got more and more ill and passed away I realised that maybe it didn’t matter how strong or stubborn or lucky she was.
Those dark thoughts were part of normal daily life and learning to compartmentalise at times was important and often necessary.
It came slow at first. The fog. For some time it was just misty, it was light, we could still see. Sometimes we strained her eyes and sometimes our vision was blurred because of it. We could still see though. Eventually the fog got heavier. It got heavier so slowly that we didn’t notice for a while. It was slow at first. Eventually it was so thick and heavy that we didn’t notice until we were choking. Until we were coughing and hacking. We noticed when we couldn’t breathe. But, by then it was too late mum. It came slowly at first. It was manageable. However in the blink of an eye this fog was out of our control. It was heavier and denser than we could have ever anticipated. We should have seen it coming. Now that I think back, I think you saw it coming mum. You tried to tell me but I was convinced the fog would lift because, it always did. It came slow at first then all at once.
There are some things I want you to know. You have taught me more about love and life than I could have ever anticipated. Losing you has been like losing a huge part of myself. I don’t know if I will ever get that part back. I don’t even know if I ever even want that part back. That part is yours now. Let it go with you, be yours, rest in your soul. Your name, your voice, your soft hands, your silly grin, your warm, open eyes are etched into the fibres that make up my every being. I will never be able to shake them. They are components of my make-up and for that I want to thank you.
Everyone told me that losing someone was hard and I thought I understood but I really didn’t. In fact, I had no idea until it happened. Until we lost our sight because of that fog. Now I know. It felt like someone had punched me as hard as they could in the stomach. It felt like I would never breathe normally again. Then, after the pain I just felt empty. You would have hated to see my zombie-like state and I knew it. It was this detail that forced me to push through and shake off the heaviness in my heart. For you, I continue. For you, I survive. For you, I will learn to love the world again. I promise. Just not today. I need more time.
I am not done with Cystic Fibrosis yet. It has met it’s match in me. I will do everything I can to take on that fight you lost.
Oh and thank you, I owe you more than I can put into words.
Your best friend,
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
Throughout my entire life my mother and I have had massively different diets. Having Cystic Fibrosis means she needs a hefty, daily calorie intake. Her typical day-to-day diet includes things like chocolate, crisps, sweets and a lot of snacking. My diet is a far cry from this indulgence. This has always frustrated me growing up. She would often be eating the things I was discouraged from eating. As a child, I had no concept of our dietary differences and would often be angry that she could over-indulge on the things that were ‘treats’ for me. I am pretty sure she was a secret snacker but I have no solid evidence for this accusation.
Now, it takes a lot of will-power and self-control to not follow her lead on the sugar front. Our house is always full of fructose-laden treats and her meals have always been saltier, fattier and sadly, yummier than mine. The fridge is stacked with chocolate bars, mince for burgers and steaks. The cupboards are filled with crisps, pretzels, marshmallows and sugary cereal. I have to remind myself of how important it is I keep my own health in check as I wade through the calorific temptations to get my morning porridge. My dad and I have low-fat or sugar-free versions of everything. The entire kitchen is split in two practically.
I have yet to go grocery shopping and not be heavily judged by the cashier for my fifteen packets of chocolate bars and biscuits. I have been asked more than once if I was having a party. Sometimes it is easier to just say yes. However, you do run the risk of getting into a deep, tangled web of lies with the friendly employee.
‘Yes, I could not be more excited about the tenth birthday party of my step-god son’s friend’s brother’.
Recent TV3 Ireland AM interview: http://www.tv3.ie/3player/show/184/97433/1/Ireland-AM
Who am I? What am I made of? Am I who I think I am? Am I plagued by deep, subconscious guilt that makes me the health-freak I am? Am I cautious and responsible because my mother was cursed with a terminal illness? Or was I always meant to be this way? If I had a sick mother would I still check my breasts regularly for lumps and turn down a shot of tequila when offered? Am I the real me? I don’t know. I have always been careful about my health. Grateful that I have been blessed in my life. Blessed with a body full of energy and lacking in pain. I have been lucky, I have been blessed. Watching my mother suffer has added to this. I would never smoke and taint my perfect pink lungs because that just seems silly? Why would I ruin something that is so perfect? I don’t go on regular alcohol binges because I have a healthy liver and why would I jeopardise that? I often wonder why I am so much more conscious of my health than my peers who are happily buying 2 for 1 shots of vodka. I want to believe that I am just ahead of my time and aware that health is a gift, regardless of my mother’s state of health but I know this is impossible. I want to believe that without her I would still be responsible with my body. I know, however this is not true.
I am careful because I have lost so many friends to the disease that cripples my mother. I am careful because it is rude not to be. I am careful because to not be careful would be to throw away fresh vegetables when there are millions starving in the world. I am careful because I would never forgive myself if I wasn’t. I am horrendously plagued by guilt if I take my body’s health for granted. Every alcohol fuelled night in my youth led to serious guilt the next day. Every time I skip the gym to watch an episode of Grey’s Anatomy leaves me guilty and annoyed with myself. I should not feel this way but I know what a precious, rare gift that good health is. It is not as common as you think, at least not in my family. Good health should be cherished but some people don’t realise that until it’s gone. I don’t want to be that way or maybe I just can’t be that way.
For now I will ponder the inner workings of my young, naïve mind and continue to strive for a life in which I appreciate what I have. A life in which I wake up each day excited that I can breathe, delighted that I don’t feel pain and grateful for it all.
“You’ll know her more by your questions than by her answers. Keep looking at her long enough. One day you might see someone you know.”
― Jerry Spinelli, Stargirl
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