‘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.

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.

It has been a while.

Dear mum,

 

Sorry I haven’t written in a while, life kind of got in the way. I’ve been thinking about you even more than usual lately. I have wanted to write but knowing you will never write back destroys me.

Remember when you said ‘when you know, you know’? I thought it was just one of those meaningless statements. The ones people bandy around along with other, over-used clichés. I thought it was just one of those things older people say to younger people.

A few weeks ago, it clicked. When you know, mum, you know. A year ago I told you I didn’t know and you told me that was my answer. I didn’t fully appreciate what that actually meant. Or perhaps I just wasn’t ready to appreciate the gravity of your words. I always knew. You knew before I knew. How did you do that? How did you always know? Is that a gift that comes with time? Is it a mother thing? Is it just an Alison thing?

You were right. I sat on the edge of my bed sobbing as he packed up his things and left. All I wanted to do was run to you. I wanted you to work your mother magic and fix it. I wanted to see your face and know, no matter how bad it hurt, you would be there for me, with me. I lay in my big bed that night and begged you to tell me what to do. You didn’t answer. I was low. I gave it a few days and waited for the storm to pass. I imagined what you might say had you been here. You would have told me that it would get easier. I would have rolled my eyes and disagreed. But, once again you were right. Every day got a little brighter and the puzzle pieces started to slot together. He wasn’t mine. He was the one I wanted to want, so damn bad. He reminded me of you in some ways. His gentle nature and warm embrace.

Are all of those clichés true?

One last question, why is the right thing so damn hard?

 

P.S I spilled coffee on your favourite pink coat, the one you always told me to take off when I am drinking something. Sometimes, I hate when you are right.

 

Your best friend,

Always,

 

Christina.

 

Memorial, memories and denial.

It has been 7 months.

Actually, I am not even sure if that is exact as I can’t bring myself to do a count. We have yet to produce an official memorial card. Everyone is always asking if they can get one and every time I have to tell them that I actually haven’t made it yet. The first question I get is ‘why?’ The answer is always the same ‘I have been too busy with work’.

Total crap. I could have made it anytime but I can’t. I just can’t. The prospect of looking through all of those photos, videos, letters and poems makes my heart sink. It is a feeling that takes over. Once you let it in, it drowns you and I have only just learned to swim again. If I let it in even a little the flashbacks flood my mind, taking up all the space. I go right back to that day, that awful, horrific day. The day I lost my best-friend. The worst day of my life (apart from the day I got that weird fringe that made me look like a young, German boy). It shoves out all the light and fills me with darkness.

I haven’t made her memorial card yet because I simply cannot bear to. Making it makes is just too real and I am not there yet. I am not ready to admit that this is forever. I am not ready to give up the fantasy of her returning and embracing me like she had just had a long hospital stay.

I hope one day I can open the photo albums with peace in my heart. I hope I can re-read her old text messages and recall the best and the worst memories. However, that day is not today. I don’t know when that day will be. Maybe tomorrow, maybe never. You don’t go through a trauma like that and emerge from the rubble totally fine. It takes time. It takes lots of things, things I don’t have yet.

 

For now, I will take it in bite sizes. Little bits here and there. Let the acceptance creep in. Let the grief creep in. Trickle in, bit by bit, drop by drop.

– Christina.  

 

“When a stargirl cries, she sheds not tears but light.”

― Jerry Spinelli, Stargirl

Surviving the tsunami.

Here’s the thing about grief it hits you in waves. These waves are small and gentle sometimes. You can dispel them easily. Just motioning your body through them and watching them quietly break up and turn to foam. Other times they are tidal and you just stand on the shore watching this giant wave coming towards you. You should run. You should scream. You should do something, anything. Sometimes you do. But, sometimes you don’t. Sometimes you do nothing. Not because you don’t want to but because you can’t. You are paralysed by the mere sight of this huge, intimidating body of water gradually coming straight for you. Slow at first and in the blink of an eye. You just swallow hard and feel what you are feeling. That changes with each wave. Sometimes you just feel sad and empty. Sometimes you feel defeated. Sometimes you feel angry. Sometimes you feel nothing, which is often worse than the anger or melancholy.

 

On August seventeenth I stood on the shore and I could see that huge tidal wave in the distance. Far away. I saw it. I heard it. On my uncle’s forty-fifth birthday I saw the tidal wave. It stayed in the distance for some time. It slowly got closer, edging closer to the shore with every passing thought. He would have been forty-five. He would have been almost middle-aged. He would have been here. He should have been here. He could have been here. Instead I was left with my Facebook feed flooded with images. Images that demonstrated his strength, his courage, his sheer determination. Standing there, oxygen on, fists raised like Rocky, a coy smile on his face. Walking, so soon after transplant. He almost made. He was so close. Then much like that tidal wave, in the blink of an eye a tsunami came and took everything. We were all so shocked we stood there, bleary eyed and wet. Dripping, cold, confused. We didn’t get it then. We get it now. What is soul-destroying about Cystic Fibrosis is that the scene after the tsunami, it happens more than once except eventually you aren’t surprised anymore. You are just heart-broken. Just when you think you literally can’t physically hurt anymore you do. You try to breathe but there is a heavy weight on your chest. You are panting but you never really catch your breath. You are just trying to stay above the water and for a long time that is enough, until it isn’t anymore, just like my mum and uncle, there is only so long you can make it that way.

So today, on my uncle’s birthday I think of them both. Laughing, running, screaming, joking, being silly. I think of them toasting. I think of them being truly happy and truly alive. I think of them living, a thing I could never picture when they were actually here.

Happy birthday Maurcie. I hope you are blowing out candles somewhere and getting to stare into my mum’s beautiful eyes and seeing her truly happy.- Christina.

 

 

 

 

 

 

ECFS 2016.

The hope. The optimism. The positivity. The enthusiasm. They were infectious. They were palpable. Everyone I spoke to spoke with genuine sanguinity and buoyancy. It has been an intense few years for Cystic Fibrosis. It has been a part climax to years of tireless research and pain-staking investigation. The European Cystic Fibrosis Society conference 2016 reflected the sunny few years CF has had. You could feel it. You could see it. You were part of it. That was the atmosphere I experienced and I loved it.

I was constantly taking notes and learning as I went along. I filled a whole notebook just from attending symposiums on microbiology and pathophysiology. However, the places I learned the most included coffee shops, lobbies and even foyers. This is where I part-took in conversations in which experts enlightened me and educated me. I learned about social policy, law, the cost of research and the importance of public participation. Many of which I had not considered important for my work. How wrong I was. Aside from learning about the benefits of probiotics and the survival mechanisms of pseudomonas aeruginosa I learned a vast amount about how in the dark I was regarding non-microbiology issues. I had been so blinded by the science for so many years that I was failing to understand so many other issues surrounding Cystic Fibrosis. I spoke to members from the various CF charities around the world and talked about the greatest issues they faced as an organisation. I spoke to consultants and nurses about patient care and the struggles they face each day. I learned about the ethical struggles of designing research. I learned more than I ever anticipated and from people I had never even considered learning from. Now, I realise in order to be a well-rounded, informed researcher you need to consider everything, not just your own research. You need to be educated, you need to link in with other people and most importantly, you need to know what the patients need.

I felt a little more informed with each passing day. As someone who recently lost her best-friend to the disease the conference was both incredibly heart-warming and also tinged with sadness. I heart people speak with great excitement about the constantly evolving CFTR-modulating drugs that are changing the lives of so many and yet I couldn’t help but think ‘why didn’t she get to experience all of this?’ I was both over-whelmed with happiness for the many suffering out there whose lives were changing for the better and also almost jealous. I was envious of their hope because in some respects I had lost some of mine. However, in other ways, I found new hope and the conference ignited that optimism that had been harder to find lately.

As, the incredible Snezana Bojcin, who won ‘Patient advocate of the year’ award at the conference said ‘we are the heart and the lungs of the same machine’. 


 

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.