No Man, Woman or Mutant Is An Island

On Sunday I was subjected to the cruel actions of a so called friend who has done little more than leech from me physically, emotionally and financially for the past 8 years. The situation is difficult and complex sadly, but that is beside the point. Because amidst my hurt and  anger I saw true friendship and support in action too - from people I have never even met. This got me thinking about friendship in general and made me realise just how much I'd lacked, missed and needed it.

 

As a young child I made friends easily, having a large group of pals, mainly boys as I was quite the tomboy, that I spent time with. Sadly as I progressed into senior (high) school away from many of my friends, it was a different story. It doesn't pay to be different in school and I most certainly was. Much smaller and younger looking than my peers, I felt very vulnerable, especially as I was going through the trauma of a seriously ill parent and coping with what we realise now were the beginnings of my own health problems too. Plus I was far more interested in doing calculus than calculating who I'd done, if you follow my drift. All in all it's safe to say the latter years of my schooling weren't exactly fun or filled with lasting friendships...

 

Thankfully though I had my saving grace, my horses. And if I'm honest the more time I spent with humans over the coming years the more I grew to love my equine friends! I seem to be a magnet for people who take advantage of my kindness and generosity, using me, bleeding me dry then tossing me aside when I'm no longer useful.

 

There was the stable girl from a well to do family who regularly 'forgot' her riding lesson payments, bus fare and food yet never once paid me back. The hotshot business woman so needy she'd spend hours on the phone complaining about the life she'd chosen for herself in London, her high paid job and even her family but who hung up on me the one time I tried confiding in her. Then we have the Aussie who used me to get a cheap tour of England, landing on my family for a month despite knowing we'd just buried my grandfather, my Dad was ill and I was in the middle of being diagnosed. Regardless of our obvious struggles, she still expected us to ferry her all over the UK. She broke half the house and ate us out of the other half....yet still insisted she'd come over to 'help us'.

 

And that's before I even get to the real nut job. Shortly after I was diagnosed I joined an online support group for people with similar types of conditions, just to try and feel less alone. Sadly whilst I did get support from most members, I also attracted the attention of a young Canadian women who proceeded to 'medically stalk' me. She would take details of issues I was having and had confided to the group about then use them to convince her doctors to give her drugs, appointments and tests galore. A genuine Munchhausen Syndrome using my medical history to gain her prize all whilst I was fighting being wrongly labelled a hypochondriac.

 

Her merciless, emotionally exhausting campaign drove me very close to a nervous break down. As a result I withdrew into myself, becoming very insular and isolated, not allowing myself to trust anyone after being hurt and used so much.  I hated being like that as I'd always been such a trusting, open hearted person, treating people as I'd hope they would treat me too. I hated that the selfish, cruel actions of a few people had changed my entire outlook and attitude to everyone.

 

Yet as the title of this blog suggests, no man is an island and I slowly learnt that I couldn't keep hiding away or coping alone. I was very reluctant to join Twitter at first, vowing I wouldn't leave myself open to be abused again. Yet I became strangely drawn to it, a little voice inside telling me 'Go on, you know you want to'. I missed talking to people who shared my passions in life. I missed contact with people outside of my family and tiny inner sanctum of trusted confidants.  

 

I guess if I'm honest I actually have my old motor-racing friend, Dan Wheldon to thank for me joining Twitter. It was my need to reach out to others feeling his loss that made me take that leap of faith. Being able to take strength from his amazing sister Holly, share the sorrow, shock and pain of his death but also remember the good times helped me grieve for a still much missed friend.

 

Yet in grieving one old friends loss I unwittingly opened up my world, my eyes and my heart to a whole host of new friends too. I've 'met' people from all over the globe who share my eclectic passions from horses to motorsport via music and wildlife. From my wonderful Twitter Sisters who encourage and support me in my goal to get back in the saddle, to my fabulous Glitter Pants crew whom I often spend all night talking IndyCar with! The various wlidlife groups that share my joy in nature, the talented musicians who enrich my life and the hugely inspiring KartForce guys desperate to get me back in a kart. Taking the plunge into Twitter has given me access to some amazing people in all walks of life, all over the world and reminded me what it's like to just be accepted, embraced and loved for who you are - not what you do, who you know or what you can give.

 

That fact was truly brought home to me on Sunday with the overwhelming and incredibly humbling response I received to a casual remark about the actions of a 'friend'. Your protective, angered yet supportive reactions made me feel whole, loved and worth more than this. A feeling I haven't had for a very long time, for many different reasons I may explain more about one day.

 

So this blog post is dedicated to you, my friends. To thank you for your support, your encouragement, your time, your acceptance, your understanding and above all else your friendship. Because you have truly shown me what that means. It's not about how many times we've met or even spoken on the phone, heck I don't even know where most of you live...and I don't need to. All I need to know is that you're there for me and that you know I'm there for you. That is what friendship is - unconditional, constant and a two way path.

 

A friend said recently, 'Twitter friends are the nicest people you'll never meet' and while I agree completely, I very much hope I can change that with at least some of you some day. But until we do meet, please know that I value your friendships deeply and I will always be here for you too.

 

Just please don't ever come and eat everything in my fridge in one sitting!

 

Johanna x

Fear Must Never Win

I have absolutely no intention of ever making this blog political or even overly topical. But like any sane, rational, feeling human being I am deeply shocked, sickened and saddened by the horrendous events at the end of the Boston Marathon on Monday. My heart, thoughts and prayers continue to go out to everyone involved and affected by this dreadful atrocity.

It is simply impossible to comprehend why anyone would do such horrendous things. What goes on in the mind of someone to make them think killing and maiming innocent spectators at a race is the right way to approach their perceived problems or grievances? We can barely come to terms with such evil let alone understand it.

Yet in the midst of such tragedy and loss we must not let our anger and fear blind us, or more importantly, change us. Despite how it may feel right now, this is not a cruel, evil world we live in. It's a beautiful world with beautiful people that is merely tarnished by the ugliness of a few. This is a world where one sick twisted mind can plant bombs to kill innocent people but also where hundreds of selfless, caring souls will run towards danger to help others.

We must remember that the ugliness in the world is outnumbered by the beauty and kindness. And it will continue to do so as long as we refuse to give that ugliness room to grow. As difficult as it is anger must not fester in our own hearts and we must not let fear control or change us, for then we give those who aim to terrorise us the very power and control they crave. The moment we are paralysed by fear and change the way we live, we have let terror win.

On September 11th 2001, I was sat waiting to visit my local library and excitedly looking forward to my longed for trip to Australia the following month. To pass the time I flicked on the TV and saw a skyscraper with smoke billowing from it's sides. Assuming it was an afternoon disaster movie I flicked over to the next channel, only to be met with the very same image. Confused and disorientated I noticed and read the news feeds scrolling across the screen and the horrendous realisation that this wasn't a movie felt like a violent kick to the chest. Sinking to my knees and shaking, I joined the rest of the world watching in horror as the unthinkable unfolded before our eyes.

Amidst the shock, grief and worry, over the coming weeks I faced difficult decisions regarding the holiday I'd been day dreaming about that very afternoon. The issue of Could I and Should I still travel weighing heavily on an already laden down heart. Could I find the courage to board that plane barely three weeks after 9/11? And more importantly in my mind, Should I even contemplate going, in the light of such tragedy and sorrow? Would it be disrespectful to focus on my own need for a holiday after so many people had died?

It took an awful lot of soul searching before I found my answers, but I slowly realised that I actually owed it to those people to get on that flight, to follow my heart and do what they couldn't any longer - live. Climbing on to that plane was far from easy to do, but as I sat there thinking of each lost life I knew I'd done the right thing. This was my tribute to them, my way of honouring them and my way of sticking a big proverbial finger up to terrorism by showing I won't be governed or crippled by fear.

Four years later I sat in front of my TV once again, this time watching in horror as my own capital city was ripped apart by yet more devastating, cowardly acts of terrorism. Joining far too many in the soul achingly desperate task of finding if loved ones are safe. The strange mixture of relief and guilt on hearing their voices, knowing so many people never got that longed for call. The stomach churning  realisation that a matter of moments before the blasts someone you love deeply was walking through tube stations that were now merely piles of rubble. That a matter of minutes had been the difference between life and death.

The terror wrought on London that day was meant to cripple us with fear, but yet again love and courage were stronger. The stories of sheer strength, bravery and heroism by people from every walk of life now stand head and shoulders above the names, faces and memories of the cowards who did this. My own love and need to be with the people I care about hugely over- rode any fear I felt as I travelled down to be with them days later. Now 8 years on I actually visit London and even use the tube far more than I did before 7/7. Because instead of dividing us the fear has united us and that is the only way we can fight this - united in the courage to continue.

We hear about the war on terror on a regular basis and it often feels so distant, so removed from us. Yet everyday we can play a vital role in that battle too, by not giving in to terror. By not allowing ourselves to be dictated to or manipulated by fear, by showing that far from dividing us, horrendous events like Boston actually unite us. By showing that the very worst actions of human nature can bring out the very best in humanity.

We owe it to the people who have lost their lives doing what they loved, or just going about their daily lives, to keep living and loving our precious lives to the fullest - overcoming fear and outnumbering the ugliness. Indeed we owe that much to ourselves.

Courage is never to let your actions be influenced by your fears. ~ Arthur Koestler

Rock And A Hard Place

I must firstly apologise for taking so long to write this update. I hope that after reading it though you will understand why the past few days have been rather overwhelming and I needed time to gather my thoughts and emotions before writing. Thank you so much for your patience and also the amazing support so generously given on Tuesday and beyond. I am incredibly moved and very humbled by it.

 

So as you know on Tuesday I faced an important appt with one of my orthopaedic surgeons regarding whether anything could be done for my now severely damaged and unstable left leg. What you may not know though is that I've actually waited a year for this appointment. Hence why I found myself cursing my 5am alarm call and battling through a still snow laden Yorkshire for 2 hours to reach this long awaited 'silly-o'clock' appointment slot.

 

I was understandably anxious and on edge about the appt already, but the early morning journey in precarious conditions only added to those tensions. Thankfully I was blessed with a wonderful driver, who not only safely negotiated the snowy roads but also kept my mind occupied with great conversation the entire journey. As I'm unable to drive right now I'm incredibly grateful to the fantastic Patient Transport drivers who make it possible for people like myself to reach appointments and treatments that would otherwise be unavailable. I know that without them I personally would not have been able to receive the specialised care I've required over the past 10 years.

 

Thanks to my driver I arrived at the hospital in a slightly calmer state than I'd expected, which is just as well as it transpired. As my body guard (my wonderful Mum) and I entered the clinic I could tell straight away something wasn't right, but was sent round for x-rays before I could confirm my suspicions. On returning from my umpty-millionth dose of radiation however (I swear I glow in the dark!) all became clear. As I'd suspected the surgeon I'd waited a year to see wasn't even there.

 

Obviously disappointed, confused and upset about this error I was ushered in to see what turned out to be my specialist's none the less very qualified 'under-study'. In fairness he was very nice and very apologetic about the mistake, equally annoyed that we couldn't discuss my complex situation together with Mr H. To add insult to injury they didn't even have my medical notes, which complicated the situation even further! I have to say though that I have huge respect for this man as he was calm, professional and talked with me as an equal about my situation, making me feel less like I'd made a wasted journey.

 

We addressed the fact that my situation is very complex, given that my knee is already beyond repair and my ankle now has progressing, complicated damage and instability - dislocating every way possible at every opportunity possible! The big question is what, if anything can we do about it. We talked about the problems and possibilities and it appears right now that I have these three options:

 

1. Do nothing and remain using my bionic leg. This would be the ideal solution of course but sadly my leg is deteriorating so rapidly it has become evident that doing nothing isn't a viable option any more. Plus although the bionic brace helps stabilise my leg it also presents problems of its own, as it doesn't stop the pain, can't be worn 24-7, damages my fragile skin and puts strain on my spine.  

 

2. Major surgery to fuse my lower leg. This would entail a brutal 4 hour operation to, as the doctor put it, kebab all the bones in my foot and ankle with metal rods, then put a huge metal rod through my heel and up my leg. This would permanently stabilise my ankle of course, but it's such a huge surgery there are massive risks and complications even without factoring in the major issues my condition adds too. Also this has never been done on someone with such a damaged leg before either and it's highly suspected it would have catastrophic consequences for my already  stuffed up knee joint - rather defeating the object. This surgery has a 12-18 month rehab period in normal circumstances too, so we can likely double that even if things went well.

 

3. Above knee amputation. This is of course the most extreme option, yet sadly at present also seems the most viable. Although this too carries lots of problems and risks, as nobody can say whether my fragile skin would heal well enough to take a prosthetic leg or whether the rest of my body, especially my other leg, would be strong enough to take the strain an artificial limb creates.

 

In short none of the limited options I have are ideal, leaving both me and my doctors very confused and frustrated. Even my specialist who is one of the foremost foot/ankle surgeons in the country is perplexed, as my situation is so complex and unique. Nobody has ever had to deal with the combination of problems I'm presenting.

 

As such the plan of attack now is to get me in to see my actual specialist as soon as possible. In the meantime, they are going to contact top surgeons around the world to conference about my case and also hit the journals, researching new techniques and writing about my unusual situation in the hope it may challenge people to devise/suggest possible options. It seems I'm quite the enigma and going to make a fascinating journal/thesis subject - ah joy, fame at last!

 

Came home with more questions than answers and not quite sure how to feel to be honest. Having a huge mixture of emotions from anger and frustration at what's happening to astonishment at how intriguing a case I seem to have become and ultimately downright fear at where this will all lead in the end. Hence why it's taken a while to write this post. To some extent I'd mentally prepared myself for discussing the options and situation with my specialist, but the reality of having someone sitting in front of you talking about amputating your leg and the type of prosthetic you'd use is something you can't even begin to imagine or prepare for.

 

Right now I honestly don't know what is going to happen, just that my leg is getting worse and I'm thinking a lot more about what an amputation would be like. It all seems so real now, yet strangely still so far away too as I'm stuck in this strange limbo - waiting, wondering, hoping that there's someone out there who has an answer to these questions that we haven't heard yet.

 

Please forgive me for the rather flat tone of this blog as I struggle with the many emotions I've been left with. But also please know that, as always, I will pick myself up and find a way through whatever the future holds... and yes, I will get back in that saddle somehow too! 

 

Thank you again for the wonderful support, kindness and encouragement you've shown me, these past few weeks especially. I only wish I could live up to the courageous, inspiring person you think I am, as it is you that give me courage and inspiration, not the other way around.

 

Take care and have a lovely Easter weekend my friends. I intend to bury my head in some escapism TV, books and trips out if the weather permits and to eat a lot of chocolate too of course. Well it seems as good a plan as any I've heard this week - if not better! :-)

 

Johanna x

 

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