“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.
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,
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’.
Is this letter three or four? I can’t bring myself to keep track because with each letter a huge chunk of time has passed. A chunk of time in which I haven’t seen your face or heard your voice. How crazy is that?
I’m angry today. It’s the kind of anger that’s tinged with sadness though so it isn’t very intense. I thought when you left this earth that all the uncertainty would go with you. Isn’t that naïve? You left and so did my opinion on almost everything. I’m stuck in this place I never thought I’d be. The fence. On all things. What am I doing, mum? If there was ever a time in which I desperately needed your guidance it is now. You left me and soon after, so did he. Now, I stand here, shocked like I’ve been in some tragic accident. Winded and bleeding. You see, at first I thought you threw me a lifeline. A loud, unhinged, fun, glittering lifeline. It was right there, handed right to me and I grabbed it with both hands. I was grateful, relieved, I was alive again. I could hear the music and see the blinding lights. I laughed until I cried again and remembered the concept of pleasure.
But then, suddenly, I saw the lights flicker and the music that I once enjoyed seemed brash and a little too loud. I hadn’t anticipated it. You see I thought that it was my life boat, I thought it was the glue that would piece it all back together. I thought, just maybe it was the solution. I realise now that was naïve. I always have been a romantic though, you know that. I wanted this to be it. My silver lining. Now, mum, I’m worried my silver lining will rain on me. I fear that this silver lining is capable of hurting me just as much as the rest of it. Maybe I’ve just been lucky until now. I just don’t know. Are you watching it all? Have you seen the entire thing? Have you seen the exciting beginning and the delicate and sweet climax? Have you seen the end? Is there one? Who am I mum? Is this really me? I pretend to have a hold on it all but it’s slipping away like sand through my fingers.
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,