Dear Irish government…

An open letter to the people with all the power…

 

I was looking for the right words to describe what it has been like to watch you all play God with something that you know very little about. I thought the words would be ‘angry’ or ‘exasperated’ but really, what I feel is frustrated and heart-broken. Aside from all of the hard evidence of Orkambi’s physiological effect, it has so much more to offer. You see for you, Orkambi is an annoyance that is costing you a lot of money (much like the solid-gold pensions of Brian Cowen and Bertie Ahern) but for so many people: mothers, fathers, brothers, husbands, children, the drug offers hope. If someone had offered me a drug that would improve my mother’s quality of life by even 5% I would give a limb to ensure she got it. We are talking about the future of many children and adults alike. A drug that could make their day-to-day life easier. Can you put a price on that? You don’t have to sit at the bedside of your struggling child this Christmas eve, watching them fight for breath. I can never explain just how soul-destroying it is to watch someone you love fade away like that. Don’t let any more CF patients fade away. It took years for organisations like Cystic Fibrosis Ireland fighting tooth and nail for basic facilities, basic healthcare needs and they did it. Don’t make us struggle for another five years before you see the light.

 

Regards,

 

A concerned citizen ashamed of her government and a heartbroken twenty-something who misses her mum.

 

I can’t hate Christmas.

My mother was one of those painfully optimistic, glass half full kinda people. She could lose a limb and a minute later would immediately comment on how she has three others. I tried to channel that for years. I succeeded for many actually. A few weeks ago as my colleagues were discussing Christmas and I felt bitter. The kind of bitterness you can feel churning in your stomach. It is a disgusting feeling, one my mother would never approve of. You see, on Christmas day last year my gorgeous mother lost her battle to Cystic Fibrosis and on that day I vowed to forget Christmas. My mother loved Christmas cheer. She loved being inside under a fluffy blanket as the frost covered the road outside, she loved the hot drinks while she read her favourite book and the twinkling of the Christmas lights late at night. I loved all of those things too. She loved the streets of NYC on Christmas eve and battling her way through Macy’s to get to the toy section.

Last night I sat down with my dogs and a mug of tea from my mum’s favourite mug. Outside the moonlight hit the frost to create this glittery sheen. The beauty of it hit me hard. What am I doing? I love Christmas. She loved Christmas. Do I want to become one of those people who spends their life avoiding something beautiful because it hurt me once before? That is like vowing never to love again once you have had your heart broken. I don’t want to be that person and my mum would never be that person. Someone told me recently it takes nothing to forgive and forget but it takes constant effort to feel bitter every day. That resonated with me. I don’t want to feel bitter about Christmas. I want to laugh, I want to enjoy, I want to experience like my mum would want me to. I want to stick out my tongue in Time’s Square to catch snowflakes. I want to (badly) sing along to cheery Christmas tunes. I want to be what she was. I want her ridiculous optimism. I want her. That’s not going to happen so this is the next best thing. Because, the thing about my mum was. She suffered. Damn, she really suffered, but you know what? She might just have been the happiest person I had ever known. She was warm and fuzzy. She was a warm hug. She was a shelter in the pouring rain. She was home.

 

I want that.

One day, I want someone to say that I was the painfully optimistic, happy lunatic they admired.

For now, maybe I will hang those Christmas stockings. All three of them.

 

‘ It’s too cold outside for angels to fly’.

 

 

-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.