I planned each chapter meticulously. Every plot and goal carefully detailed and dictated. It would be a masterpiece, a best-seller. It couldn’t possibly fail, not with this level of attention to detail. There was only one part of the narrative I couldn’t control. One detail I couldn’t write into the climax. The great loss that was my mother would be a bitter, unexpected tragedy, so everything else had to perfect, to allow for this huge demise. I would finish my PhD exactly as planned, on time. It would be a portfolio of meaningful, scientific, impactful work. I would find a job with equal meaning, making a difference, fixing things to make up for the one thing I couldn’t fix. I would always strive for more. Pushing myself to be better, stronger, more determined. I would marry at a reasonable age to a reasonable man, a man with good morals, a man my mother would approve of. I was ready for all of it. I was almost ready to publish when you disrupted my entire plan. I didn’t write you into my story. I didn’t have room for you. Every character had already been accounted for. I didn’t think there was room for you. What I didn’t realise at the time was, you weren’t a character I would write-in last minute. You, you were the entire story, the entire plot. Now, the story I didn’t write or plan for is the only one I care about and you and I are the main characters. And now, none of the other details, storylines or plots are planned. The only thing we can count on, is us, You and I. For the first time in my entire life I am unsure of everything, everything but you.
I tell him all about you. I laugh at your attempts to set me up with a Starbucks barista who really just wanted to take our order and never see us again. I cry at your pain. It is all mine. Your moments of pure joy, were my moments of pure joy. Your pain cut through us both like a sharp knife. I tell him so I won’t forget. I tell him because one of the saddest things in the world, to me, is the fact you will never meet him and he will never meet you. He would make you laugh. He does that self-deprecating, underdog thing you would have rooted for. He would have admired you in every way because you are the literal meaning of the words ‘strength’ and ‘determination’. You would have debated and playfully argued. He would have feared you. And loved you. I tell him about your past. I tell him about your journey. I tell him about your final destination but I tell that story with tears strolling down my face and onto his.
I tell him because with each passing day you get further from me.
I tell him because I am scared.
More than anything I am petrified that one day I will wake up and I will forget how you would sip your tea.
I tell him because you were mine and now he is too.
It started on a hazy summer night. Two incredibly broken people and one bottle of champagne. Nobody else understood. We danced beneath the moonlight and everyone else melted away, we were the only ones left. We celebrated our flaws and embraced each other’s broken pieces. Turned out that my missing pieces almost fitted yours. Where had you been this whole time? I had no idea this dark utopia existed until you came into my life. You were that music that penetrated the vacuum. We moved fast. Trauma does that to you. It binds you. It bonds you. It’s kind of a permanent thing. We danced in that same moonlight until your mind started to wander elsewhere. Suddenly our safe haven wasn’t enough. It was too safe. You craved the broken, the wild, the untamed, the unconventional. All I ever wanted was a peaceful existence. Not you though, you craved the noise, the lights, the entire world outside ours. The same world that never understood you, was now pulling you further and further from me. Why? You wanted me because I defied your expectations. You celebrated my loud voice and brash opinions, remember? The same opinions that you are now trying to shape, the same voice you are now trying to silence. Where did I lose you? Were you ever mine? Was it just circumstance? Was it just a bottle of champagne and pure chance? Was any of it real?
I wanted the man that danced on the edge with me, the one who was raw and authentic and totally flawed. I don’t recognise you now. You are bored. You seek a new trauma, a new life-changing event, a new partner in crime. I am finding it harder and harder to listen to your remarks and critiques. Remember when you craved my flaws, creating poetry out of each one, letting them melt into us? My flaws are now the butt of your jokes, your tired, over-used jokes. You perform to this non-existent audience. We used to be on that stage together but there isn’t room for me anymore. You take my trauma and turn it into funny anecdotes and droll party pieces. When did that happen? I’ve heard a lot about love and this isn’t it.
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.
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.
Sometimes you just have to feel the pain.
Being raised by a woman with a chronic illness, you learn to be resilient. You learn to recover. When you are broken or defeated you quickly gather yourself, pick up the pieces and make a new plan. It’s how you survive. It’s how you make it through the day. I rarely let myself just hurt. Why? The obvious answer is because it is soul destroying. It takes you to the darkest pits of your mind. The places you almost never visit. The places the light doesn’t reach. The places you fear you may never get out of. Today, I stopped. I stopped recovering. I stopped trying to bounce back from the darkness. I lay down in her favourite room and I just breathed. My breath was heavy. It took mere seconds of letting my guard down to see her. I am six years old and she is chasing around the park. I’m wearing that big, red coat that you love. The air is crisp and has that fresh Autumn scent. Everything is brown and orange and the air is laden with Halloween anticipation. I’m screaming and giggling as I run away from you. You chase after me with a sparkle that your eyes only ever had in those younger years. Your skin is perfect porcelain in the cold air, just like it was until the very last day. I’m so happy I could burst.
Where did that all go?
Sometimes you just have to feel what you really feel because holding it back all the time is exhausting. If I just lie here, my eyes shut tight, my body perfectly still then at least I will have you here with me. If I just keep my eyes shut then you will never disappear. Don’t go because the second I open my eyes I have to gp back into survival mode.
Survival mode might be killing me.
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