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.
It enlightens me in ways others will never be privy to. It makes me more well-rounded.
I can help educate others into the ins and outs of living with Cystic Fibrosis. What it looks like. What it feels like.
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.
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,
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.
“When a stargirl cries, she sheds not tears but light.”
― Jerry Spinelli, Stargirl
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.
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 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,
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?
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?