“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.
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.
I sat on the old park bench with my two incredibly lazy dogs and people-watched. I saw you run around, laughing, smiling with your adorable son. I’m guessing he is around four. Both of you, in hysterics over your game of peek-a-boo. It made me laugh. It is one of those perfect sights that makes a young woman like me think of herself as a mother one day. It also made me think that you must need boundless energy to keep up with your giggling little munchkin. As soon as he caught sight of my little balls of white fur he ran straight over, you, a few footsteps behind, trying to keep up. He insisted on hugging both of them and asked me if they were twins. Then as I was responding to his many questions he coughed, abruptly and intensely. You were unfazed and apologised insisting he isn’t contagious.
He has “Cystic Fibrosis” we both stated in unison. We spoke about Orkambi and research and you told me about how you encourage as much physical activity as possible. You were so optimistic and enthusiastic, it was contagious. You made me think of how different life is now for people being born with Cystic Fibrosis. A far cry from my mum’s birth and odds in the seventies. You brought me back to a place I hadn’t been in a while. I am in this constant battle of emotions. I am torn between feeling resentful that my mum never lived to avail of the numerous treatment options out there today and also incredibly grateful that so many others lead such different lives and will have different fates. Most days, I focus on the positive. The endless emerging therapies and the stepping stones leading to an eventual cure. Some days, every so often though, I wallow. I wallow in that dark place where those options didn’t exist. Where the light at the end of the tunnel got further and further away from us and every passing day our hope diminished. You know what though? That’s okay. Grief is a complex thing.
Thank you, kind stranger, for the reminder that now, there is so much light. So much hope. Even in my dark spaces, people like you interrupt my solitude with your bright lights and music. I hope your son has a life filled with light.
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 for being my best friend, my role-model and my inspiration.
I love you.
-Your favourite child by default,
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.
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?
- 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.
- 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?
- 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?
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!
My mother was one of those painfully optimistic, glass half full kinda people. She could lose a limb and a minute later would immediately comment on how she has three others. I tried to channel that for years. I succeeded for many actually. A few weeks ago as my colleagues were discussing Christmas and I felt bitter. The kind of bitterness you can feel churning in your stomach. It is a disgusting feeling, one my mother would never approve of. You see, on Christmas day last year my gorgeous mother lost her battle to Cystic Fibrosis and on that day I vowed to forget Christmas. My mother loved Christmas cheer. She loved being inside under a fluffy blanket as the frost covered the road outside, she loved the hot drinks while she read her favourite book and the twinkling of the Christmas lights late at night. I loved all of those things too. She loved the streets of NYC on Christmas eve and battling her way through Macy’s to get to the toy section.
Last night I sat down with my dogs and a mug of tea from my mum’s favourite mug. Outside the moonlight hit the frost to create this glittery sheen. The beauty of it hit me hard. What am I doing? I love Christmas. She loved Christmas. Do I want to become one of those people who spends their life avoiding something beautiful because it hurt me once before? That is like vowing never to love again once you have had your heart broken. I don’t want to be that person and my mum would never be that person. Someone told me recently it takes nothing to forgive and forget but it takes constant effort to feel bitter every day. That resonated with me. I don’t want to feel bitter about Christmas. I want to laugh, I want to enjoy, I want to experience like my mum would want me to. I want to stick out my tongue in Time’s Square to catch snowflakes. I want to (badly) sing along to cheery Christmas tunes. I want to be what she was. I want her ridiculous optimism. I want her. That’s not going to happen so this is the next best thing. Because, the thing about my mum was. She suffered. Damn, she really suffered, but you know what? She might just have been the happiest person I had ever known. She was warm and fuzzy. She was a warm hug. She was a shelter in the pouring rain. She was home.
I want that.
One day, I want someone to say that I was the painfully optimistic, happy lunatic they admired.
For now, maybe I will hang those Christmas stockings. All three of them.
‘ It’s too cold outside for angels to fly’.