“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.
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.
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?
Months ago when my mother and I toyed with the idea of starting a blog I thought it would be more technical than this. I thought the posts would be more informative and less emotional. I imagined it would be our way of informing the world what Cystic Fibrosis is. It would our way of educating people on the condition. Somewhere, very quickly along the line that went out the window. I no longer care much to tell people about the technical, medical side of it. You can Google the disease. There are numerous websites that dictate the scientific details. Tons of them. There aren’t very many that delve into the emotional side of it. Not many dwell on how it feels for everyone? How does it feel to know you could die? How does it really feel to know your mother could be taken from you when it isn’t her God damn time yet? Nobody told me about that stuff. I didn’t have a blog I could read growing up. Nobody told me how they felt. Now, I want to tell people how it feels, for everyone.
I almost wish I had read my own blog as a teenager, or as a pre-teen. I could read about the highs and lows. I could smile with relief that Cystic Fibrosis didn’t make me lose my mind, or my mother, yet. I could prepare for the rough times ahead. I could just know. I could know that somewhere, out there someone has felt what I feel. Someone has experienced the unique heartbreak I am feeling. I could would feel a sense of comradery. Growing up, I didn’t know any other kids with CF parents. None of my peers could relate. I went to a very small secondary school. I think someone’s dad had cancer, once and that was it. It was a little isolated. I didn’t have the community and support network I have now.
If you are out there, reading this and you can relate to my situation in some way, cool. Take a deep breath kid because it is alright. I know it sucks. I know it makes you angry and sad and a whole list of widely diverse emotions but just know it isn’t always this way. You work with the madness and soon it becomes normal. Your new normal. You forget that you are unique because, well, you aren’t that unique when you know the right people. Hang in there kid, you probably have more life experience than most thirty year olds. Own it. You got this. Don’t let anyone tell you otherwise. It is going to be okay, even if it isn’t. Now, quit reading a stupid blogpost and go live. Go eat an ice-cream and count the blessings you do have.
Latest TV3 Ireland AM interview: http://www.tv3.ie/3player/show/184/97433/1/Ireland-AM
This week I was invited to Ireland AM on TV3 (Irish television channel for you non-Irish folk) to chat about our blog. This entire experience got me thinking about how much I have changed, as a person over these last few years. I can’t imagine being so open, authentic and real about the challenges associated with my mum’s condition a few years ago. Now, however I don’t know how else to tackle the topic. We all have challenges in our lives. We all have hardship. We all hurt and you know what? That is okay. You can still be strong. You can still be admired and you can still be tough. Being vulnerable and open shows strength. The entire televised experience left me feeling close to myself. Close to who I am and all that I represent.
I don’t want this post to be boring and condescending. I don’t want to go into extreme detail about how naked and how freeing it felt to be real with thousands of people watching. Instead I want to urge you. You, right now, reading this to go live today to the fullest. Live loud and proud. Be you. Don’t hold back. Go tell the man/woman you love that you love them. Don’t waste another second holding back. Chase your dreams. Go after them and grab them. Hunt them down. Don’t give up. You are you and you know what? You are kind of amazing.
I have to stop writing now. The sun is shining and I am grateful to be alive. I have to go live. I have to go hug my mother and kiss her beautiful face. I have to thank my father for being the unsung hero that he is. I have to call the man I love and profess that I could not live without him. I have to run through the grass with my dogs and let them lick my face. I have to laugh at something stupid and smile until my face hurts.
“Count your age by friends, not years. Count your life by smiles, not tears.”
― John Lennon
A link to the interview. http://www.tv3.ie/3player/show/184/97433/1/Ireland-AM