I’m not sure if that’s how I should start this letter.
It’s not like I’m writing to Sandra who lives in Australia (disclaimer – just a hypothetical Sandra, I don’t happen to know anyone called Sandra) I’m writing to a disease, it’s weird as it’s not like you can write back to me.
Where do I begin? You have been a part of my life since I was a foetus. A little while after I was born, you gave my parents so many questions to answer. For example, why I was drinking so much milk and not putting on any weight. Surely drinking nine bottles of milk a night was going to add a bit of chub on me?! I wish you could have given them a heads up to reveal what was really wrong with me. But you didn’t, well, how can you, you’re completely invisible. You do all your damage and play fun and games on the inside. Something which my parents did not expect to happen to their newborn and only daughter. You derailed their lives after the sweat test, you just had to make my sweat bloody salty didn’t you?! You changed their worlds forever, not just theirs, my family’s too. You gave them a daughter, a granddaughter, a niece and a cousin who may not live past eighteen years old, how very deceiving and evil of you. And rude.
It was only when I was four years old that I discovered I was different from the other kids in the classroom. Taking Creon before I ate anything while my friends didn’t have to was a massive giveaway. You had me puzzled for a little while, I thought everyone had to do the same as I did. All of a sudden, I felt like an alien. Though thankfully, my classmates were understanding and never asked me the dodgy question “What are those things you’re putting in your mouth?!”. That would have been an awkward moment. They just accepted me for who I was. We still played ‘House’ on the yard at lunchtime.
I cannot begin to fathom why you chose my body to home in and chose my life to destruct. Did you think my lungs would be a good home for that disgusting, sticky phlegm? Did my pancreas do something so wrong for you to make it stop working? Did you feel like me and my body needed to be punished in some way? Well, you only have the answers, it’s a shame you can’t tell me over a cuppa.
I believe wholeheartedly in the phrase – “You were given this life because you’re strong enough to live it”. Maybe you thought that too. Maybe you thought that I was strong and brave enough to battle you everyday. Maybe you thought I could cope with all the countless hospital appointments, the vast enormities of medication, the painful pricks of needles of all varieties, the fighting for my breathe, the limitless amounts of sticky phlegm being coughed up from my weak lungs, the tiredness and nausea from IV antibiotics, being constantly worried of what my future will bring and managing you on a daily basis.
I wish that you would give me a break. Allow me a day off from the medication regime, a day off from the lacklustre physiotherapy, a day off from coughing up phlegm into a pot and just being worried about what you have in store for me next. Allow me to feel what it’s like to live normally. That’s it though isn’t it – I can only wish for that. You and I can’t make that happen.
One victory I do have over you is that I defied you and the doctors from all those years ago and I’ve lived past my eighteenth birthday. I’m 27 now and I’ve never felt better. Because of you, I’ve grown an inner strength which I never thought I had within me, I’ve stood up to you numerous times and I don’t want to let you beat me. Ever.
Ok, I know a day will come when you will decide that my lungs need to retire, you’ll make me struggle to breathe, you’ll make me lose weight even though I’m eating KFC’s like there’s no tomorrow, you’ll give me a multitude of problems which I won’t be able to manage.
I’m not looking forward to the day of when I’m wondering if there will be a tomorrow or not. I’m not ready for that day yet. I can’t face it yet. Even though that day draws ever closer, I know there’s things I still want to do and I need time to do it. I hope you can give me that time. Please.
I’m sorry if I’m coming across as a moany cow, but you needed to be told. I hope you read this and take to heart of how you’ve treated me over the years. I hope you reflect on your misgivings and bad behaviour towards myself and so many others with Cystic Fibrosis.
Not only have you given me this horrible illness, you’ve given other wonderful people this god awful disease and I’ve lost friends because of you too. It’s not fair. It’s not right. Yep, I’m going for the guilt trip here.
Ok, let’s be fair here. You have allowed me to talk and meet some wonderful and inspirational people online through Twitter, Facebook and Instagram. You did make sure that I didn’t feel alone in this. So I kind of have to thank you for that. But you’re still a b*****d. I’m sorry if you are taken aback by that, but let’s be frank, I’m not the only person who thinks this.
Let’s end off this letter. Do your worst. I’ll be waiting, I’ll fight you with every little fibre of strength you’ve already given me. I always said I will never let you define me, I certainly won’t let you beat me yet. Remember, you gave me this life because I was strong enough to live it.
Yours Sincerely (or faithfully, I always get them mixed up)