I remember, so don’t act like I have forgotten.

Dear Mum,

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,

 

Teeny.

Dear Dad..

When I was nine years old you told me I could be an astronaut, in fact you told me I could be whatever I wanted. I now realise that was ridiculous since I was almost legally blind and got car sick.

That is when you planted the seeds. You were raising me not to settle. You encouraged all of my whimsy and ridiculously free-natured mannerisms. I didn’t realise it then but now, I understand. You told me never to accept what I find to be mediocre. Not in love, not with my passions, not with my friendships and especially not with my dreams. You made me laugh when I was sad or angry. You gave me my sense of humour. Now, after a day of lab work that has gone wrong I make a joke and we both laugh. I got this quality from you. When I am broken you help me find the missing pieces and you constantly tell me I could find them without you but I know that isn’t true. You push me when I am on the verge of quitting and you tell me to run when it isn’t worth fighting for. You never doubt me, even when the world is telling me I’m taking the wrong path, you trust me, blindly and totally. This is where I get my blind faith from.

Most importantly, you taught me what true love and mutual respect looks like. When I was growing up I always knew I wanted someone to love me the way you loved mum. It is because of you that I know what I deserve. It is because of you that I didn’t settle in love. I wanted the blissful existence you both had even when times were hard. I wanted someone who looked at me the way you looked at mum even until her final day. Others would say that love like this is fictional and unrealistic but having seen it first-hand I know I too can have that. You made me want someone that really would love me in sickness and in health. You know what? You knew that mum might not live until old age and you didn’t care. You watched her brother lose his battle with CF and you threw caution to the wind and followed your heart. I wanted that. You taught me that love doesn’t involve logic or science. Love doesn’t follow any rules or any perfect path. When everything in our lives was dictated by timelines, rules and regimes you showed me that this one thing wasn’t. None of it mattered. All that mattered was this indescribable thing you felt for her. For all of this, I am eternally grateful. You taught me endless lessons. You are the unsung hero of our story, did you know that? I really mean that. You held us all together when we were almost falling apart. When a mean boy hurt my feelings you drove to my university campus to take me home and when mum lost her damn good battle with CF you promised me everything would be okay eventually.

 

Thank you.

Thank you for being my best friend, my role-model and my inspiration.

I love you.

 

-Your favourite child by default,

Christina.

How to survive Christmas.

A warm and fuzzy guide to surviving the Christmas period after loss. All of my ridiculous tips and advice are to be taken with a giant pinch of salt- to the eyes.

 

  1. Gin

And a lot of it, just joking, mulled wine is a safer bet. This way you just look like you are getting in on the festive spirit and nobody can say anything but! Plus, mulled wine gives you that tingly, fuzzy feeling inside that warms your whole body. Nobody ever got violent on too much mulled wine. Fact. What could go wrong?

 

  1. Mince pies.

That’s right, if over-eating doesn’t make you forget the pain of Christmas then nothing will! If you don’t have crumbs all over your hideous Christmas jumper then you aren’t doing it right. Christmas wouldn’t be Christmas without a hefty dental bill and swearing at your scales.

 

  1. A healthy dose of denial.

So what you are going to want to do is take all your emotional baggage and put it into a little metaphorical box in your head. Once you’ve done this, go right ahead and pretend it doesn’t exist. This is what healthy people do, right?

 

  1. Outbursts of anger.

I mean, why go to hours of counselling when you can just randomly take all your pent-up issues out on those you love most?
 5. Honesty. 

Make sure to tell your family and friends repeatedly how shit the holiday season is. Don’t stop there though. Tell them how much you hate the Christmas tree, the music, the decorations, your hideous jumper, the food, your aunt Sally and her dog Scotty. Christmas is the time for honesty and what is more honest than sharing your blatant hatred for the holiday?

 

One last thing, remember, if you are suffering then everyone else should be too! So spread that misery!

 

 

-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.

 

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.

My name is not ‘victim’.

My name is Christina and I chose not to be a victim of circumstance.

A lot of crappy things have happened to me in my lifetime. Oh, have I mentioned that I am only twenty two? From a very young age I knew my mother would die young. She told me. She told me in a warm, fluffy way with an explanation that involved God and angels and the meaning of life. Regardless, it meant she would die. I knew at that moment that my entire life wouldn’t be like my best friend’s. It would be very different. I would be very different. What I didn’t know was just how much it would test me. How much it would try to break me. How much it would erode my charisma and chip away at my naturally sunny disposition. What I also didn’t know for many years was my greatest distress would come at the tender age of twenty two. Most of my friends were drinking away their feelings and agonising over which Calvin Harris song should be the theme tune to their evening and I was double checking Morphine doses and trying to hide the cracks. My Facebook statuses were still funny and I still smiled at people in the street. I looked fine. On a very superficial level I had convinced myself things were fine but they were so far from fine that I actually forgot what fine felt like. I hated when my parents or my doctor used words like ‘anxiety’ or ‘depression’ because I was fine. Sure, my stress levels were a little high but other than that I was FINE. I was ‘fine’ for a few years. After a while ‘fine’ became ‘okay’ and ‘okay’ became ‘coping’. These were the terms and words I put on my struggle. On my anguish. Silly. I know. While one of my best friends was going through major depression I told her not to be ashamed. Not to be afraid to say it aloud because depression was nothing to be ashamed of. It doesn’t make you weak. I meant it yet I couldn’t bear to let the advice resonate with myself. I am the person who is always fine. When mum is dying and dad has left work because he is struggling I am fine. When my best friend can’t bring herself to get out of bed in the morning, I am fine. When my neighbour is getting her breasts removed because she has cancer, I am fine.

 

I was not fine. I was broken. I was so broken that on the day of my greatest tragedy, losing my best friend and greatest inspiration, my mum, I wasn’t even anymore broken. I was maxed out. My heart had been broken already and her death just made sure that my broken heart was fractured even more. I could have let that be it. I could have given up. I could have stopped caring. I could have done a lot of things. I could have become a crazy cat lady in an old, stained jumper who hoarded old Argos catalogues. But I didn’t. I made a decision at a very young age not to be that person. Now, as I look back on my journey I have learned some things. It really is okay to not always be okay. Also, despite the stresses and turmoil, I have learned something beautiful and invaluable about life. I feel like in many ways I have won the lotto. I know something about life that very few people do. Those cheesy quotes about how short life is that people love displaying on their walls mean something to me. For me, it isn’t some upbeat statement. It is a fact. I have danced between the lines of life and death. I have seen how blurred they are. They are not merely one or the other. I once heard someone say ‘there are things worse than death’ and I thought ‘what a silly statement’. Now, at twenty two I understand that statement. I understand lots of things I wish I didn’t. I am grateful now though. As a wise man once told me, I have been given the gift of time. I am going to make use of it. I am not going to ignore those beautiful little things that enrich our existence. I am going to soak it up. Walk in the sunshine. I will not let my hardship victimise me. I aim to make something of myself. I want to be my own role model. I want to be a woman my mum would be proud of. My name is Christina and I am going to be somebody.

My name is Christina and my life has been difficult.

My name is Christina and my life has been beautiful and fulfilling in ways that most people will never understand.

My name is Christina, watch this space.

 

-Christina.


 

 

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.