Friday, 16 May 2014

A Dream Postponed

To my dear IndyCar Family, this is a post I hoped I would never have to write & have tried everything I possibly can this past week to avoid. But as much as I hate to admit it, I am so sorry that I'm not going to make it over the pond to the Indy500 this year as I'd very much hoped to do.

In spite of my best efforts the complications I've suffered since my surgery have taken too heavy a toll. Talking with my surgeon this week it's become obvious that flying would present a serious risk to my health and that risk would not be fair on me, my family or you.

I am utterly gutted right now & am unashamed to admit I've shed many tears too. I was so desperate to experience this spectacular event in person with many of the wonderful friends I've made here.

However, as devastated as I am feeling at the moment, this blow has just made me all the more determined to get to Indy next year. This dream is merely on hold not over, that I can assure you!

Plus around the same time as Indy next year I will also be celebrating a rather significant birthday too - what better way to celebrate than at the Indy500?

I will of course still be as involved as possible in this year's race, watching & tweeting from across the pond. But it will also be very bittersweet not being there. I hope all my friends able to attend will have an extra special time for me & take lots of photos too please!

I really am so saddened & sorry that I won't get to see you all & share the Indy with you this year, but I promise that we'll make up for it in May 2015.

I'll write a proper blog over the weekend explaining more about my leg etc. But for now I can only apologise again for not being able to come over. I try so hard not to let my condition stop me or hold me back & I truly hate it when I have to accept that I can't do things but sometimes common sense has to win over my stubborn, bloody mindedness. Those times always makes me more determined to make it happen eventually though - and I will make this dream happen, I promise you that!

Enjoy this year's Indy500 my friends & thank you so much for all your support, encouragement & friendship, it helps me so much more than I can say.

Take care, 
Johanna x 

Wednesday, 5 June 2013

Because I'm Worth It?

So first things first, I must apologise for not having updated my blog for such a long time, the past few weeks have been rather hectic to be honest. I will endeavour to catch up over the next few days but please bear with me.
On that note I will begin by going back three weeks to my visit to the new genetics clinic, an appt that had me more than a little stressed beforehand for several reasons...
When I was first diagnosed there were only a handful of specialist doctors dotted around the country who treat the kind of condition I have. The nearest to me was a Professor working in a hospital across Yorkshire. This would entail a 140 mile round journey for me but was my only option as most doctors I saw couldn't even spell the basic conditions I had a mutation of - which doesn't exactly fill you with confidence!
Although this Professor was an eminent expert on connective tissue disorders and has been published in journals all over the world, by the time I saw him he was rapidly nearing retirement. Sadly this meant that I never really got the best care I could have from him, as he was very obviously 'working his ticket'. On one occasion I travelled down at the crack of dawn in horrible weather then sat for 2 hours before being seen, yet this Prof didn't even lift his eyes from his desk other than to pick his break time snack when the tea lady rather rudely interrupted my consultation!
Thankfully the one good thing I did get from Prof was access to some fantastic Orthopaedic surgeons down in the same hospital group who, over the past 7-8 years, have done their utmost to keep putting me back together. I can't put into words the gratitude I have for these guys as without them I would undoubtedly be wheelchair bound and very possibly even totally housebound. I literally owe them my life.
Anyway, a few years ago I travelled down for my routine appt with Prof, where he was supposed to monitor and help me manage my condition, but had done little of the sort for several years. On this occasion however, I was taken in to see a young, general doctor who calmly informed me that Prof had retired and wasn't being replaced as the entire unit had been closed! I was then also informed that I would be referred back to a 'local specialist' and from that moment on was dropped into a very deep, dark hole called limbo.
In time I received an appt to see this new doctor, who was still based over an hours drive away. On the day in question we'd had some of our worst snow fall in years which caused havoc on the roads. We battled through and arrived only 20 minutes late, which was something of a miracle given the conditions. However, despite the majority of his patients having cancelled, I was still left until the end of the clinic before being seen, by which time it was 12noon.
When I was finally ushered into his room, this so called specialist was utterly clueless, very arrogant and had absolutely no expertise in my type of condition whatsoever - stating that he was just 'interested' and we could 'learn together'. He didn't even examine me because it would take up to much of his lunch break and bluntly told me that he would have just cancelled the appt in these conditions (I'd waited 6 months for it already). He then proceeded to suggest I do the very physiotherapy that I'd actually been doing since before he was born and prescribed medications that I'd already told him I was allergic to. Needless to say, I wasn't impressed and didn't go back!
However I still needed someone to help me manage my overall condition, treating the bigger picture not just the broken parts so to speak. So I started asking my GP for help getting referred to a doctor who actually understood these conditions and could help me. Unfortunately the number of such people had reduced even further and when I pushed for help in finding a new specialist, I was told in no uncertain terms that it was down to me and 'not his job'.
The frustration at not having anyone help me merged with fear of not having anyone monitoring and managing a condition that could cause my major arteries and organs to rupture at any time. Nobody I spoke to seemed to understand why I was so concerned and wanted help. My GP even blurted straight out that I wasn't worth the cost of referral as it's not like they can fix me! I sat feeling shell shocked that my own doctor had basically just told me I wasn't worth helping. He genuinely couldn't see what I would gain. He couldn't grasp the idea of support, peace of mind, reassurance and having someone with real knowledge to turn to when things go wrong. All he could see was the pounds, schillings and pence.
I felt completely worthless. I felt empty. I felt lost.
Late last year I was sent to see yet another useless, general rheumatologist who had no clue about my condition. He then compounded matters by lying to me, writing a parcel of lies in my notes and cementing the general 'worthless' opinion people had of me. I cried with sheer anger and frustration when I saw what he had done...and cried even more when I was forced to see him again. This time he proceeded to dismiss my condition and try to label me with something he hadn't even tested me properly for. All so he could throw pills at me & suggest I needed therapy! When I challenged him he got very rude and arrogant to the point where I actually walked out of his office.
Doing so didn't make him change his views but did shock him into doing something, as  he finally referred me to a new diagnostic genetic clinic. Sadly this wasn't what I'd been asking for as my pleas for help with long term care/management fell on deaf ears and he sent me to a clinic that just diagnoses not treats. Again I felt deflated and lost...but eventually decided I had nothing left to lose in attending the clinic.
And so three weeks ago I made yet another 2 hour journey to yet another hospital where I sat for an hour laying bare my medical and family history yet again. Thankfully the consultant and genetic counsellor I saw were both lovely, really listening, putting aside other doctors pre-judgements and taking on board my situation and struggles. The upshot being that they too feel it's impossible to pigeon hole me into one particular type of condition and strongly suspect I have a unique mutation. The difference is, they've taken skin biopsies to genetically analyse on several different levels. The results could take 4-6 months but I'm interested to see what they find.
However, as interesting and helpful as this appt was, I am still very much in limbo with regard to support and management of my condition. The frustrating part is, there's a clinic in London that provides a multi-level care for conditions similar to mine, with specialists in all the areas affected working together to give a 'big picture' approach to managing these illnesses. Sounds perfect doesn't it? Only problem is, it's not available on the NHS...only to private, paying customers. Regardless of whether I can afford this or not, I find it utterly despicable that people with debilitating, disabling and potentially lethal conditions who are reaching the point of desperation with their lack of care are being denied help because they're not rich enough. It is tantamount to playing God.
I apologise for this post being so long and for ranting, but I find it so depressing that people can be broken down to cost effectiveness and profit margins. Health care should be about doctors doing the very best they can to help their patients survive and thrive regardless. Every doctor takes the Hippocratic oath when they qualify, part of which states 'First do no harm'.... Surely putting money before humanity can serve to do nothing but harm?
There is something so inherently wrong here it frustrates, angers and scares me. But you know what, I will overcome this. I will fight and I will find a way to thrive, because that is what I do and quite frankly I am too damned stubborn to give them the satisfaction of making me feel as worthless as they suggest I am. My illness has taken an awful lot away from me already so I won't let the medical profession take what's left.
As a very dear friend of mine taught me: 'I am Perfect, Whole, Complete, Strong, Powerful, Loving, Harmonious and Happy!
Johanna H x

Sunday, 19 May 2013


I'm often asked what it's like coping with my condition and the consequences it has on my life. Obviously words like frustrating, painful and frightening come straight to mind but the emotions involved in having your world turned upside down by sudden, debilitating, incurable illness are far deeper and complex.
To be honest I think the best way to describe it is like a silent, unseen bereavement. That may sound rather extreme but when everything that defines who you are is suddenly, unexpectedly taken away, the person you were effectively dies in that moment. Yet nobody notices. Nobody grieves or mourns your passing. There's no acknowledgement of your loss. You're still here, so nobody notices that you feel empty and dead inside, little more than a shell of what used to be and what was yet to come. Nobody sees the light in your eyes go out as you watch one dream after another being yanked from your grasp.

All the familiar things in your life disappear. Even things that you took for granted, like walking up stairs, making a cup of tea, getting dressed or showered yourself or going out alone are suddenly major achievements or, worse still, utterly impossible. You go from being an independent person in your own right, to having your identity absorbed in to someone else's life. No longer in control of how, when or even if you can do things anymore.

Until it happens you can't begin to imagine what it feels like to have every last scrap of your independence and identity taken away. Everything that made you the person you are, gone forever. Leaving you lost in the body and life of a complete stranger, with a new, unexpected and unwanted life to build from scratch.

As a writer I don't normally do poetry but I wrote this a few years ago to express the emotions of living with my condition and it's many consequences on my life. I hope it gives you a little insight into the many life changing aspects of my condition but also my determination to overcome as much as I can & rebuild the best life possible for this 'me'.


When I look into the mirror, who is it that I see?
So many different faces are looking back at me.
There's the person that I used to be, so full of dreams, so free,
Not knowing what the future held or how different it would be.
The me who used to be healthy, the me who used to ride,
The me who lived at full speed, took all things in my stride.
That me now gone forever, the me that's lost for good
The me new friends would never guess, was ever flesh and blood.
There's the me that fought to stop my dreams from dying one by one,
Who strove to hold on to the past, who battled hard and strong.
The me who cried myself to sleep, trying to comprehend
How everything that defined me could come to such an end.
The me that hoped this would go away, that one day we could treat
The dreadful beast that hit me and knocked me off my feet.
That me who searched for answers from medics of every kind,
The one who fought so hard to prove, it's not 'all in my mind'.
The one who firstly was relieved, when diagnosis finally came,
But far from bringing answers, it just gave the beast a name.
The me who then had to come to terms, with disability and pain
Incurable, untreatable, I'd hear once again.
The me that baffles doctors now, who keeps them on their toes
With surgeries aplenty, to patch each part that goes.
Ruptures and subluxes, braces, pills and sticks
Are all a part of daily life, for the me they can not fix.
There's the me that finds it hard sometimes to face up to my fears,
Who struggles to get through those days without shedding any tears.
That me who simply has to shout, who has to scream and cry
When I don't know what scares me more, to live in pain or die.
And the me that people expect to see, the one who says 'I'm fine'
Who never shows quite how she feels, who doesn't whinge or whine
The one who's told 'You are so brave, a courageous inspiration'
Whilst holding all the pain inside, the anger and frustration.
There's the person that I'll never be, the one I dreamt of being
So many aspirations I've no longer hope of seeing.
Lastly there's a determined me, who'll always put up a fight
To make the best I can of life, chase dreams still in my sight.
So when I look into that mirror, who is it that I see?
Do I even recognise this person that meets me?
I'm all these people and much more, I'm everything they've made me
But most of all, I realise, I am the person I can yet be.

Johanna H x

Tuesday, 30 April 2013

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

Wednesday, 17 April 2013

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