Is this the meds, or me talking?

The patient in bed 23. 

That’s me. Sort of. That was me in my most recent hospital trip where I spent a week waiting to get minimal answers, and they only came from a tall welsh man named Doctor Parratt, and with a name like that how can you not expect him to spout out logic. Confused? That can happen when you only take a glance at the inner workings of my life. So how about we start with some facts! I love facts. And lists. So let’s do both.

• ·       I’m 18
• ·       Female
• ·       Live at home with my mum and one of my sisters
• ·       I’ve lived in the same amount of countries as there have been Sherlock seasons
• ·       I bet the number of Sherlock episodes in terms of how many houses I’ve lived in. Only by 4
• ·       I’ve broken my arm twice
• ·       Had a total of 8 stitches in my whole life
• ·       But the winner would have to be the 20 staples I had in the back of my neck after brain surgery.

That didn’t really help did it? I guess the point I’m trying to make is that my life can be pretty crazy at the best of times. I mean, who has brain surgery 6 months before they sit their HSC exams? But that’s what I had to do, because I have a chiari 1 malformation. Maybe I should start with diagnoses? That might help.  So let’s flashback to when I was an awkward 14 year old and still looked like a boy!

By June 2010 I had been doing platform and springboard diving for 18 months and was loving it. For 5 years prior to starting I did competitive trampolining, so I took to the board with the same amount of joy. But, like so many who do similar sports, injury is inevitable. When my back had gone beyond the point of manageable I went to the physio and he sent me for an MRI where the radiographer saw I had two cysts in my T-spine and so did extra scans of my brain where they found a 9mm herniation of my brain out of my skull. Long story short, I wasn’t symptomatic so the ass of a neurologist told me that it was no big deal and to just get on with life. So I did. And then two years later, after a country change and an earthquake, it became something more than a quirk. The symptoms I was experiencing were daily headaches, bouts of numbness and pins and needles in my legs, and it got to a point where I couldn’t get out of bed for days at a time. The thing with chiari is that it’s unique to each individual. The problem is, your brain is literally coming out of the base of your skull, and can reduce the flow of fluid to your spinal cord, which just brings a whole lot of problems to the table. Anyways, after seeing a neurosurgeon we decided surgery was the best course of action in the hopes to eliminate my symptoms, or at least prevent them getting worse. And with me being young, fit, and relatively healthy, my outcomes were looking good. So I had the surgery on the 18^th of April 2013. The two weeks leading up to it were spent with the first week at diving nationals, and then squeezing two weeks’ worth of school exams, into one. So I didn’t have time to freak out and over analyse. But surgery went by, and I slowly got back to diving. School was tough, I’d tire easily, and the guys in the back of my math class never made it any easier with the noise. Honestly, how hard is it to stay quiet for an hour? Eventually the HSC exams came and went and I passed school, which I’m not sure how I managed. But with the new year approaching, I decided to take the following year off to get back to normal, and have an easy year in comparison to the 10 prior.

So that’s a broad over view of my chiari history. And I guess, one of the main reasons I’m putting this up tonight is I’ve had a bad two days. My headache has been constant and sat at a solid 6.5 on the pain scale they make you take when in hospital, and I also read an article which had a very good point. It stated that one of the main reasons we love John Greens story The Fault in Our Stars, is because it’s just that; a story. There’s an end that we can live with, sure it may not be too happy, but it’s an end nonetheless. Don’t get me wrong, I love the book and I saw the movie opening night, but it’s just a story, and once people read it, they go back to their lives. Okay, they may think about it every once in a while, but they aren’t living it. 

For a long time I stood by the fact that yes, I had a chronic illness, but I wasn’t chronically ill. That opinion has changed in recent months when I realised that I can’t do things a normal 18 year old can do. I don’t go out partying or clubbing at night because I physically can’t. And sure, I don’t have cancer like our leading lady, but I have chiari, and it takes more out of me than I'd like to admit. This isn’t a cry for attention, this is me, putting my thoughts out there, and trying to find a way to live with the cards I’ve been dealt, because more often than not, I feel like I have a losing hand. But I wouldn’t have it any other way. While chiari takes a lot out of me, it’s also given me more than I could ask for. I’ve learnt to love every good second that I get given; I’ve learnt not to dwell on the little things, because there are more important things to worry about. And yes, there are times where crying is to painful, but I appreciate my life, the good and the bad, so much more as a chronically ill young person, than I would ever as a regular teenager. 

Being sick is the ultimate oxymoron. It makes you strong while you’re weak. It gives you knowledge about life as it eats away at your own. It teaches you how to fight for your life while it’s out of your control, and maybe one day I won’t think of myself as chronically ill, but I hope I never lose that fight and all the things it’s taught me. Who knows, this may just be the pain meds talking, and I may regret this is in the morning, but I hope at least one person has read this till the end so they understand that everyone has got their own cards to deal with. And while my hand has put me at the bottom of the leader board, I know that someday soon, I’ll get a couple of aces that’ll give me a chance at winning this game.