It could have been easy.

My mum once told me that anything worth having would never come easy. She was right. She was always right.

It would have been easy to escape it. Run away. Quietly move on. Silently drift away, enter a new world. I could have immersed myself in a different world. A world that isn’t as close to my heart as this one. I could have had a job, not a passion.

I could have spoken about my job like it was just that, a job. A nine to five. There could have been it and me. Two separate entities. Two uninvolved things.

I chose not to. I chose to have a passion. I chose not to let go of that passion. I chose to have a career that was woven into every fibre of my being. I swallowed hard and made an instinctual choice. A tough one. No hesitation. No pregnant pause. I took the road that would inevitably be filled with questions and statements that will make my heart drop. The road I chose might sometimes be dark. It will sometimes be lonely. I might be scared. I might even feel broken at times and lose sight of why.

But as my mum once said anything worth having won’t come easy. A career in Cystic Fibrosis isn’t a job, it is part of who I am at my core.

 

 

-Christina.

The Eulogy.

Dear mum,

 

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,

Always,

 

Christina.

Dear Dublin…

Dear Dublin,

It’s been a while. I never thought I’d write what I am about to write but I guess life is funny like that. I left your bustling, cold, wet streets on a typical October evening and thought I’d never look back. I thought I’d never miss the electric atmosphere, the loud, muffled laughter from a music filled pub or the weird and wonderful strangers who made the streets their own. There was a time when I didn’t like you. There was time when I didn’t understand you. There was a time when you chewed me up and spat me out. Left me lying on the streets, lost and heart-broken. You were there for it all. You were there when I was scared, wandering through the streets in the early hours. You were there for the melt-downs and the storms. You were there to witness the mean boys and shaping adventures. You were also there when I stood on the lawns of Trinity College as Summer was approaching. You were there for my first kiss with a boy that later stole my heart. You were there for the laughter. You were there for the eight gallons of Bewleys hot chocolate and the O’Connell kiosk donuts. You were there for the unbreakable bonds of friendship that were formed. You were there for the moment my roommate turned into my best-friend.You were there for my drunken rendition of Ed Sheeran on Leeson’s street and my deep, meaningful conversations with taxi drivers.

What I didn’t realise at the time is that you healed me. When I first met you I was broken. I was looking for a new beginning and you gave me just that. You were fast-paced and wild and I needed that. I let life get in the way of that precious relationship we were forming and I blamed it partially on you. Then, abruptly, unannounced I upped and left. No note, no explanation, no love lost. Until some months later when I craved you. I needed you. I needed your street musicians, your eccentric people, the diverse accents that populate your hub and your heart.

I didn’t appreciate you. I took you for granted. I let life cheapen my opinion of you. I see that now. I’m sorry. I’ll be back. Right now I am in a new city. It isn’t the same. It has yet to beguile me. It has yet to enchant me. Thank you. For all of it. I needed it.

 

Always,

 

Christina.

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Ten things you need to know about CF hospital stays. 

1. Nobody brings you flowers.

Did you know that flowers harbour a dangerous bacteria so most CF wards won’t allow fresh flowers because of this. 

2. Sometimes you schedule your stays. 

You can usually tell when you will need to be admitted next (roughly) and so you plan around that. Planning to get IV antibiotics in mid-December so you can be out by Christmas isn’t uncommon. However, sometimes that two week stay you had planned somehow turned into four weeks, ten bad straight to DVD movies and two mental breakdowns. Standard stay. 

3. You often prefer cake to grapes. 

However said you should bring a hospitalised patient grapes has obviously never met a CF orient who is actively trying to pile on the pounds. 

4. Visiting hours don’t apply. 

When you have had most of your major life experiences in a hospital room the rules about visiting hours generally don’t apply. Family members always crash on a mattress by the bed especially when things are rough. 

5. You interpret your blood results faster than the doctor on-call. 

Me: ‘What is my CRP? 900? That is pretty good for me. Don’t worry.’ 

Worried looking doctor: ‘That seems very high.’

Me: ‘Nah, I had the flu and my CRP was 1500 now that was high. This, not so much. Hey while you are there, what’s my white cell count?’

6. You know the nursing staff too well

You know the incredible nurses so well that you are bringing them back gifts from holiday and advising them on home decor. 

7. You know that Thursday is Canteen chicken pie day. 

8. You also know that chicken pie is the only edible canteen meal. 

9. You know all the other CF patients really well but only from afar or online because you can’t actually meet them in person or hang out because of cross-contamination. 

10. You aim to use your hospital time wisely. 

You think: ‘maybe I will read all of Jane Austen’s stuff now that I have the time’. By day two IVs are kicking your butt and you can’t stop feeling nauseous for long enough to do anything. 
-Ali. 

  

When your life has the same intensity level as a Grey’s Anatomy episode.

What’s the most dramatic thing that could happen to someone? Disaster? Near-fatal injury? Disease? Death?

That’s kind of the premise for many highly-charged, itense, television dramas, isn’t it? I mean there are other things in there, great love, dramatic romance, loss, huge, life-style changes but the general theme is the same: change and drama. Sometimes I think my life is a bit like that. What would my life be like if I didn’t have the turbulence of my other’s disease? What would my life be like if I didn’t have to recieve updates on her constantly changing condition and the next course of action? What would it be like if we didn’t have to leave our holiday days earlier to get her to a hospital? What would it be like if some of my days weren’t tainted with distraction and making sure the rest of my family is okay? Mentally and physically? What would it be like to just wake up, eat my breakfast and think about what nail colour I might wear today? Would I be bored? Would I just think that was normal? Would I think that an episode of Grey’s Anatomy is over-dramatic and unrealistic? Would I realise how important love is? Would I realise that life is this rare, precious thing that could be unexpectedly snatched from you at any second? Would I worry less? Would I worry more?

What if?

Right now my life is highly charged, it is hectic, it is dramatic but I am happy. I am grateful for all that I have. I am grateful for my life. I am grateful for all of it. Is that normal? I get on with it. I still laugh at jokes and watch far too much television. What is normal anyway?

-Christina.

You know how when you were a little kid and you believed in fairy tales, that fantasy of what your life would be, white dress, prince charming who would carry you away to a castle on a hill. You would lie in bed at

So I am a carrier, now what?

Finding out you are a carrier of a disease evokes lots of emotions. For me though, I have always known I carry the Cystic Fibrosis (CF) gene.

So what does this mean? It means that if I have children with another carrier, we could have a child afflicted with CF. What exactly does this mean for me? Should I ask my boyfriend to get tested now? Or should I wait until we one day decide to have children? What if he is also a carrier? Then what? Do we decide to avoid natural children altogether and think about adoption? Do we go down a more scientific route? What do we do? What is in the best interest of our future child? What is morally right? If we avoid natural children because we are both carriers is that morally corrupt? Or am I being silly and thinking about it all too hard? How do I feel about it all? I have no idea. I have no idea where to start or when to start. What if I one day have an unplanned pregnancy? What if that leads to a CF child? Does everyone have to think this hard about having children? Probably not.

Right now I have no idea if my boyfriend is a carrier or not and I think that is okay. I am only 22. I am not planning on getting married anytime soon or even having children so maybe I will let it play out organically. In short, I have no idea what I will do about this. I could give you a perfectly thought out plan about what I will do surrounding having children but that would be a lie because now I am clueless. I do know though, that if I was blessed with a child one day (CF or not) the child’s health status would not affect the love I would have for him/her.

For now, I think I’ll worry about what to have for dinner tonight. I think, being 22 warrants worries like that.

-Christina.

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My one and only.

A note from Spring of 1999.

That smile, in the morning makes me come alive.

She is so beautiful.

The tiny hands, feet, the laugh, the chat, the calling of my name makes me feel so special.

I love her more than my own life.

I watch from the window as she plays in the wind.

There is so much happiness in her smile.

I fight, every day because tomorrow will be special.

She will be there and my life will go on.

-Ali.

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