‘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.

Are you getting my letters?

Dear Mum,

 

Is this letter three or four? I can’t bring myself to keep track because with each letter a huge chunk of time has passed. A chunk of time in which I haven’t seen your face or heard your voice. How crazy is that?

I’m angry today. It’s the kind of anger that’s tinged with sadness though so it isn’t very intense. I thought when you left this earth that all the uncertainty would go with you. Isn’t that naïve? You left and so did my opinion on almost everything. I’m stuck in this place I never thought I’d be. The fence. On all things. What am I doing, mum? If there was ever a time in which I desperately needed your guidance it is now. You left me and soon after, so did he. Now, I stand here, shocked like I’ve been in some tragic accident. Winded and bleeding. You see, at first I thought you threw me a lifeline. A loud, unhinged, fun, glittering lifeline. It was right there, handed right to me and I grabbed it with both hands. I was grateful, relieved, I was alive again. I could hear the music and see the blinding lights. I laughed until I cried again and remembered the concept of pleasure.

But then, suddenly, I saw the lights flicker and the music that I once enjoyed seemed brash and a little too loud. I hadn’t anticipated it. You see I thought that it was my life boat, I thought it was the glue that would piece it all back together. I thought, just maybe it was the solution. I realise now that was naïve. I always have been a romantic though, you know that. I wanted this to be it. My silver lining. Now, mum, I’m worried my silver lining will rain on me. I fear that this silver lining is capable of hurting me just as much as the rest of it. Maybe I’ve just been lucky until now. I just don’t know. Are you watching it all? Have you seen the entire thing? Have you seen the exciting beginning and the delicate and sweet climax? Have you seen the end? Is there one? Who am I mum? Is this really me? I pretend to have a hold on it all but it’s slipping away like sand through my fingers.

 

Yours always,

Forever,

 

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.

If I just..

Sometimes you just have to feel the pain.

Being raised by a woman with a chronic illness, you learn to be resilient. You learn to recover. When you are broken or defeated you quickly gather yourself, pick up the pieces and make a new plan. It’s how you survive. It’s how you make it through the day. I rarely let myself just hurt. Why? The obvious answer is because it is soul destroying. It takes you to the darkest pits of your mind. The places you almost never visit. The places the light doesn’t reach. The places you fear you may never get out of. Today, I stopped. I stopped recovering. I stopped trying to bounce back from the darkness. I lay down in her favourite room and I just breathed. My breath was heavy. It took mere seconds of letting my guard down to see her. I am six years old and she is chasing around the park. I’m wearing that big, red coat that you love. The air is crisp and has that fresh Autumn scent. Everything is brown and orange and the air is laden with Halloween anticipation. I’m screaming and giggling as I run away from you. You chase after me with a sparkle that your eyes only ever had in those younger years. Your skin is perfect porcelain in the cold air, just like it was until the very last day. I’m so happy I could burst.

Where did that all go?

Sometimes you just have to feel what you really feel because holding it back all the time is exhausting. If I just lie here, my eyes shut tight, my body perfectly still then at least I will have you here with me. If I just keep my eyes shut then you will never disappear. Don’t go because the second I open my eyes I have to gp back into survival mode.

 

Survival mode might be killing me.

 

– Christina.

A letter to my ex..

Dear BP,

 

I had my heart broken once. It was horrific. It was scarring. I thought I would never recover but I did. This time was different. This time I broke my own heart and maybe yours? You know all those clichéd break up lines? The ‘it’s not you, it’s me’ well I understand them now. You see, it really isn’t you. It was never anything you said or anything you did. It really wasn’t you. It was merely unfortunate circumstance. You and I were just two jigsaw pieces that looked very similar but just didn’t fit. It wasn’t anyone’s fault. Not mine. Not yours. The pieces just didn’t fit. They didn’t make a cohesive image, no matter how much we tried to make them fit and damn, we tried. We tried so hard, too hard. I see now that it shouldn’t be that difficult. My mum always said love is easy and I’m not sure it was easy enough for us. There was so much love and respect between us. Over those years we became best friends but that wasn’t enough. I want you to know now that I really wanted you to be the one. To be my one.

 

I went to R and M’s wedding this weekend. I thought of you as they delicately exchanged their vows. I thought of us and the life we had built together. The one I tore down faster than either of us ever anticipated. As I watched them, eyes glued to each other I realised something. They were all in. They did something we never could. You and I stood on the precipice at one point. We looked down at the scary, roaring ocean and instead of jumping together we just kind of danced around it. There was a time when we could have been just like them. We could have jumped P but we didn’t. Something always held us back. Was it fear? Or were we always vaguely aware it wouldn’t work? I have no idea. But there was a day when I stared into your blue eyes and I knew if I just jumped I could have everything but I took a cautious step back. For that, I am sorry.

 

I wanted it to be you. Just know that every man that comes after you will be endlessly compared to you. Your kind, gentle nature is my bench mark now. That day haunts me. The day when I saw the ferocious ocean beneath us and chose to stay on the cliff, looking down. I can never get that back and maybe that is for the best. Maybe not.

I hope you find a woman that makes you want to dive in, head first. I hope I get to hear about your sweet exchange of vows and be happy for you.

 

Talk soon,

Your friend,

 

 

Christina.