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,
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.
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
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?
Cystic Fibrosis has good days and bad days. Today, my mum had a good day and we made the most of it. Disease can be rough. It can be tough on the entire family. Approaching everyday with love and compassion is how we make it work. However, even the good days are incredibly difficult and short lived.
Sometimes, it is all of the little moments that turn out to be big memories later in life.