In The Beginning

So here I go then, my first post. I've started this blog primarily to chart my journey, overcoming the hurdles my disabilities create in order to chase and ultimately achieve my many dreams and goals, But in order to move forwards and understand the significance of this journey, first I need to look back and explain how I ended up on this path at all.

 

For as long as I can remember I've adored horses, in fact my very first time in the saddle was at 18 months old, on a beach donkey ride. The fact that the young donkey took off with me across the sands and when my horrified parents finally caught up with me I gleefully asked to do it again, rather set the tone for the next 20 odd years of my life!

 

I worked in several different yards from a riding school to an Arabian stud, but especially loved Eventing and Dressage. As I'm small and slightly build, I spent a lot of time backing and training young horses, often working with a horse right from it being born to advanced schooling. As I result I spent most of my time behind the scenes, preparing horses for other people and didn't compete as much as I'd have liked, but I thoroughly enjoyed my work and wouldn't have traded the magical bond I was able to build with 'my horses' for anything.

 

I was always a bit of daredevil on horseback to be honest, often riding bareback or being asked to try something new with novice horses. I suppose it tells you a lot that my favourite cross country jump was called the coffin! As most horsey people (especially Eventers!) will tell you, injuries are part and parcel of the job and we're usually pretty blase about them too. For example I once came off during a one-day event, landing heavily on my left arm but, ignoring the fact it hurt when I jumped, I finished the round coming third overall. It wasn't until I arrived home & told Mum my arm hurt that we noticed it was hanging loosely at my side. A trip to hospital soon confirmed I had in fact broken my shoulder blade. I was put in an immobiliser splint for 6 weeks & told to avoid riding for 3 months - two weeks later I was back in the saddle!

 

That was just the way things were though. So when I injured my left leg in late 1999 I simply popped my dislocated knee cap back in to place and kept working. I certainly had no idea it was going to turn my entire life upside down, leaving me disabled and taking away the career I adored. As far as I was concerned my future was mapped out, working with horses & aiming for my ultimate dream of riding at the Olympics.

 

But my knee just wouldn't get better and two failed surgeries later, I was left using crutches and have never walked unaided since. That injury was the catalyst for a devastating spiral of events that led to the rest of my body falling apart. In the space of a few months I'd gone from fit, healthy horse rider to a virtual cripple. My bizarre medical issues baffled doctors who proceeded to wrongly diagnose me with all sorts, including a cattle illness right at the height of the mad cow disease scandal! Sadly when they couldn't actually find what was wrong they arrogantly decided it was all in my head, so I spent 3 years not only battling my failing health but fighting to prove I wasn't a hypochondriac too. Eventually in 2005 I got a tentative diagnosis, but it took a trip to a research program in the US to get answers.

 

There I was given the sickening news that I have a rare, probably even unique genetic mutation that makes all the systems in my body very weak and fragile. It's complicated as it pretty much affects every part of my body including my skeletal, cardiac, neurological and vascular systems. As an example though it makes my bones break easily and my joints are so unstable they dislocate multiple times a day from simple movements, requiring painful relocation and splinting. Most worryingly though, my blood vessels, main arteries and internal organs can rupture spontaneously. In many ways it was good to finally have answers, but it was also utterly shell shocking to be told I had an incurable, untreatable, progressive condition that will leave me disabled and very likely kill me.

 

It felt like the life I knew had been shattered in to a million pieces, everything that made me who I am was suddenly gone. I faced this new future I didn't know or want, a stranger in my own life. I'd lost my dreams, my career, my independence, my very identity.

 

But gradually I have come to terms with my new existence, realising that although it's far from what I expected or wanted, this life is still incredibly precious and it's up to me to do what I can with it. This condition has taken a great deal from me and I have to accept there are things I will never be able to do, but it's also given me many things too and certainly hasn't stopped me living to the full. Through sheer determination and blood-mindedness I've created a new, different me and achieved things I could never have imagined. I've climbed mountains in New Zealand on my crutches, been snorkeling with manta rays on the Great Barrier Reef, attended motor races half way round the world. I've carved out a new career and even helped create, launch and promote a platinum selling album.

 

Of course there are days when I get down, when I get angry and sad, when I just need to shut myself away and mourn for the life I lost. But then I pick myself up and push forwards to make this life all it can be, for as long as I can. Nobody ever said life was going to be easy and the harder things are the more you appreciate the achievement at the end. People often tell me I'm brave, but I'm not, I'm just getting on with my life. We each have a choice in these situations, roll over, give up and feel sorry for yourself or get up and fight. 

No-one can tell me what my future holds as my condition doesn't even have a name, but I finally have some great surgeons who run a surgical conveyor belt trying to put me back together again. I have a lot of metal work as a result and use a specially designed bionic leg brace, leading to me being called the bionic woman at times! My left leg, where the original injury started, is now severely damaged and unstable, so I see my surgeon on Tuesday to find out if there is another last resort surgery that can save it or if the time has come to amputate. I'm obviously anxious about it, but I know now that I can and will cope with whatever happens - besides I'd save a fortune in socks!

 

Knowing what I do now about my condition, which remarkably has been there since I was born, it is a miracle I survived my crazy riding career and childhood! I often wonder if being diagnosed earlier would have made a difference to how severe it is now. But on the flip side if I'd known as a child, my parents would likely have wrapped me in cotton wool and I'd never have had the amazing experiences I did with my horses. And I wouldn't change that for the world.

 

I've been told I'll never ride again, but telling me that just makes me all the more determined to prove people wrong. There are a million and one reasons and risks why I shouldn't but the one reason why I should is stronger than them all and will get me back in that saddle again. Yes it's dangerous, but with the condition I have, everyday life is dangerous, and I'd rather die with a smile on my face riding a horse than sitting in a wheelchair making wicker baskets!

 

And so that's where this blog really begins... ready to chart my crazy but determined journey to get back on a horse and no doubt many other adventures along the way.

 

So hold tight as I love horse power of all kinds! ;-)

 

Johanna x