‘When did she tell you?’

“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.

-Christina.

Dear Stranger.

 

 

Dear Stranger,

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.

 

Always,

 

Christina.

My womb but not my choice.

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.

 

-Christina.

A letter to 2015 me.

Dear 2015 me,

 

Remember the dodgy haircut and bad break up of 2011? Well, 2016 is like that but with an earthquake and tsunami as well. You see, 2016 is the year that almost kills you. It is the year that will hurt you so much that you will want to die. You will want to give up. You’ll think ‘how can I hurt this bad and still have a beating heart?’ There will be days in which you will dance on the edge, flirt with the idea of throwing in the towel. 2016 is your test. I don’t even know where to start. Don’t freak out but that thing that you have been pushing to the back of your mind has happened. I mean the doctors said it would. Your counsellor said it would. Your dad said it would, heck you even said it would (even though we both know you thought it was just a myth or something) well it has happened. She’s gone. But before you freak out, somehow you are still breathing. Your dad will be fine, you will be fine, eventually. You both teeter but you come back. You take some time off from the research but you go back and damn, it is hard. You will flinch every time you hear the words ‘Cystic Fibrosis’. Your heart drops when you have to hear about ‘mortality’ or ‘end-stage disease’ but you normally keep it together. You don’t really ever stop feeling the pain or the confusion but with each passing day you get a little bit of yourself back, the forgotten bits.

Remember that other thing you were constantly torn over? Well, you made a big decision about that too. The difference is, this one feels right, even though it hurts. He knew it all along and you did too. Don’t give that one a second thought, it was a fun and beautiful chapter that naturally came to an end. You will move on without even realising it. You will blink and suddenly be drunk on champagne laughing in a way you never thought you were capable of. 

You might get a few more questionable haircuts and be a bit insufferable for a while but you sort of find your centre again. Who knew you were such a badass? You certainly didn’t. Your birthday is a little ropey but that’s okay. You pull it together like you always do. So, brace yourself, the storm is coming and it’s a bad one. Just hang in there until the rain stops and the winds settle. Don’t forget to breathe. One breath at a time.

 

Good luck.

– Christina.

 

Rubble and ruins.

I hadn’t been there since the incident. I had heard about the wreckage. I heard tales of what was left. The whispers suggested fragments and shards but nothing more. They were wrong. It was more than that. It was destroyed but still beautiful. A new kind of beautiful like a historic, abandoned site. It was a unique piece of art now.

The ceilings seemed higher now and the doorways grander. Everything was bigger and emptier. For a second it seemed like someone else’s house. Maybe I was on a movie set, wandering aimlessly, observing the aftermath of someone else’s fictional tragedy. Or maybe it was just a nightmare. A vivid, surreal nightmare from which I have yet to wake.

The photos were faded, damaged from the storm, the faces not totally visible. The ornaments and frames were scattered everywhere as though they had been intentionally thrown. I stood there, in the hallway, our hallway and I felt as though I had been punched in the stomach. With every new piece of damage I noticed the noisy flashbacks flooded my mind.  Me, her, him, the life we once had. So vibrant and intense, full of fervour and colour. Now, the walls grey, moulded and damp. The building, was void of colour and passion. That’s all it was now, a building. A rotting, unstable building.

I only became aware of the insufferable temperature when the biting, winter wind passed through as though there weren’t any walls at all. The hair on my arms stood, alarmed and the frosty air hit my lungs in a way that shocked me. That was the heart-wrenching moment that assured me this was not a nightmare. It was more than that. How could reality be so lifeless? How could someone with a beating heart feel so little? The air was heavy with sadness, my sadness, hers and his. The sadness of broken hearts, broken promises, broken faith and broken people.

There was a silence. A deafening, horrific silence. The kind of silence that heightens your other senses, torments them, taunts them. The kind of silence you never want to experience. The kind of silence that might only last seconds but feels like hours. Was this it? Am I done now? Are we done now? Is there more? Will I ever see in colour again?

My ear-splitting thoughts were interrupted. My heart skipped a beat. I swore I was the only one there. I was alone, I was sure of it. I gasped as though I had been holding my breath. I was choking now, choking on the oxygen that was now filling my lungs. Panting heavily my tears began clouding my vision but it was louder than me. Louder than the wreckage. The gentle music took over. The light melody in the distance was carried by the harsh winds. What was it? Who was it? I was sure I was alone. I was sure that silence would kill me but now I can’t even remember it. My hands were shaking, my body warming as though the shock was fading. It was a tune that sounded familiar. Perhaps I had heard a similar tune before, or perhaps it was the exact song that haunted my daydreams and fantasies.

-Christina.

Professionalism is hard sometimes.

‘Pathology’.

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.

‘Infection’.

It enlightens me in ways others will never be privy to. It makes me more well-rounded.

‘Exacerbation’.

I can help educate others into the ins and outs of living with Cystic Fibrosis. What it looks like. What it feels like.

‘Compliance’.

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.

-Christina.