I read somewhere recently that every time you remember an event, you aren’t recalling the actual event. Instead, you are recalling the last time you remembered it. That killed me. Does that mean every time I think of you, I am just thinking of the last time I recalled a memory of you? There is something so removed, so aloof, so unnatural about that. I want to believe that each time I think of you, I think of you exactly as you are, as you were, just you.
People tiptoe around you now. Not everyone, just most people. They act like we should pretend we have forgotten because it is easier than recalling you and your death. I hate it. I want to remember you, daily. You were and still are the biggest influence in my life and that hasn’t changed just because you aren’t here. I want people to ask about you. I want them to the fun, beautiful, bright memories of you that we all share. I want them to acknowledge you. There is no elephant in the room. You are gone. Your influence, however, will never be gone, not for me.
You might just be my favourite and most inspiring subject.
I guess I have been dealing with the fact that you haven’t met him and that you never will. That is a real shame. He has that annoyingly brutal honest bluntness that you had. He also has that absurdly self-deprecating humour that you adored. He’s not what I expected but he is exactly what I think everyone wants in another human. He has your tenderness. You would like him. I think, in time, you would love him. I don’t even know why I am bothering to detail all of this to you. You see it all now. You’ve seen him, seen us.
To quote you ‘I miss ya kid’.
Love and love again,
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.
Throughout my entire life my mother and I have had massively different diets. Having Cystic Fibrosis means she needs a hefty, daily calorie intake. Her typical day-to-day diet includes things like chocolate, crisps, sweets and a lot of snacking. My diet is a far cry from this indulgence. This has always frustrated me growing up. She would often be eating the things I was discouraged from eating. As a child, I had no concept of our dietary differences and would often be angry that she could over-indulge on the things that were ‘treats’ for me. I am pretty sure she was a secret snacker but I have no solid evidence for this accusation.
Now, it takes a lot of will-power and self-control to not follow her lead on the sugar front. Our house is always full of fructose-laden treats and her meals have always been saltier, fattier and sadly, yummier than mine. The fridge is stacked with chocolate bars, mince for burgers and steaks. The cupboards are filled with crisps, pretzels, marshmallows and sugary cereal. I have to remind myself of how important it is I keep my own health in check as I wade through the calorific temptations to get my morning porridge. My dad and I have low-fat or sugar-free versions of everything. The entire kitchen is split in two practically.
I have yet to go grocery shopping and not be heavily judged by the cashier for my fifteen packets of chocolate bars and biscuits. I have been asked more than once if I was having a party. Sometimes it is easier to just say yes. However, you do run the risk of getting into a deep, tangled web of lies with the friendly employee.
‘Yes, I could not be more excited about the tenth birthday party of my step-god son’s friend’s brother’.
Recent TV3 Ireland AM interview: http://www.tv3.ie/3player/show/184/97433/1/Ireland-AM
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