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.
I tell him all about you. I laugh at your attempts to set me up with a Starbucks barista who really just wanted to take our order and never see us again. I cry at your pain. It is all mine. Your moments of pure joy, were my moments of pure joy. Your pain cut through us both like a sharp knife. I tell him so I won’t forget. I tell him because one of the saddest things in the world, to me, is the fact you will never meet him and he will never meet you. He would make you laugh. He does that self-deprecating, underdog thing you would have rooted for. He would have admired you in every way because you are the literal meaning of the words ‘strength’ and ‘determination’. You would have debated and playfully argued. He would have feared you. And loved you. I tell him about your past. I tell him about your journey. I tell him about your final destination but I tell that story with tears strolling down my face and onto his.
I tell him because with each passing day you get further from me.
I tell him because I am scared.
More than anything I am petrified that one day I will wake up and I will forget how you would sip your tea.
I tell him because you were mine and now he is too.
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.
In the wake of Donald Trump’s rise to power I have been forced to confront my own feelings on some things. Everywhere I go there is some mention of reproductive rights. Something, somewhere always acts as a trigger. Websites chiming in, celebrities tweeting their own personal beliefs, a statement T-shirt on a crowded college campus, news headlines, a friend absent-mindedly discussing his overt views over drinks on a Saturday night, blaring radio segments, magazine covers, trashy red-top papers with misleading headlines, it doesn’t cease. Everyone has an opinion and most are forcing theirs down my throat. I sat in a crowded room, each of them bickering casually over their own thoughts and feelings. I reached into my bag to get my phone and instead met some old tablets. My mum’s tablets. Then it occurred to me that I hadn’t used this bag since before my mum’s passing. I held them tightly in my hand and my breath became shallow. Must. Keep. It. Together. Just as Birdy’s voice began to wind down I was transported back.
I sat in the kitchen of their house. It hadn’t even been four months since I had faced my greatest challenge. They had two children, their first has CF, now in her thirties, fit and healthy. Their second was lucky enough not to receive two copies of the gene. They spoke of their experience with their first child. They had never even heard of the disease. They faced shock, sadness and a steep learning curve. They spoke about all of it in such a ‘matter of fact’ way, emotions of their distress clearly in the past. They then spoke of their second pregnancy. This was when the tone changed. They tell me it was then that they realised they were pregnant with a ‘decision, not a baby’. My heart sank. I felt sick. I felt the colour drain from my face. I was already upset but now I was just disgusted. Did they really just say that? I had no idea how to feel. I was outraged, horrified, hurt, bewildered and just outright irritated. How am I supposed to respond to that? I zoned out. I was too busy immersed in my own grief and misery to defend my personal opinion. Then, they stated in a rather aloof ad stolid way ‘you too Christina may be faced with such a decision, since you carry the gene’.
Please allow me to set the record straight: I will never be faced with such a decision. A child’s life is not a decision for me. It isn’t a choice or something I can play with. Any child of mine will be loved and cared for regardless of their health or their life expectancy. How dare you confront me with your ideals.
I understand everyone has a journey and I don’t understand that journey unless I have lived it myself but this is my opinion. Please don’t talk to about my future. I believe in being informed, prepared and educated on these things but I certainly don’t believe I have a say in any of it. I don’t want a choice, not in this scenario. Unless I explicitly ask for it, I don’t want your advice or thoughts.
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.