I sit here writing this article as a 41 year old healthy fit man who owns his own successful Project and Sales Management Business servicing the Construction Industry. I have a lovely wife of 3.5years. We own our own home. I have travelled, lived and worked all around the world, we have a great network of friends, we live in a wonderful part of the best country in the world. The sun is out and there a cool winter nip in the air to remind us that is still July and I am looking forward to a good gym session tonight. All in all life is pretty good.
Oops sorry I forgot to mention that I have this rare disease called MPS6 . However, in my defence the MPS always has played and always will play second or third fiddle to everything else I have done so it certainly doesn’t warrant a mention amongst the other narratives in the above paragraph.
I can’t deny the fact that having MPS6 has blended and moulded its way into making the man that I am today. And like everyone else who does have this disease I probably spent a little too much time that is normal or necessary as a child in the company of doctors, and I was never going to be lining up for the marathon or 100metres final at the Olympics, But I have never let it or used it as an excuse to not do the so many other things that make up the majority of who I am today, and dam well nor should any of you.
As I look back over the last 41 years I guess I was lucky in a way in that I was born in the pre internet and MPS knowledge days. They say ignorance is bliss and what you don’t know won’t hurt you, and in my case this was defiantly the case. No one knew what MPS was when I was growing up, and we didn’t have Google to scare the hell out of us with its living room DIY medical diagnosis (or mis-diagnosis) capabilities, so as a family we just dam well got on with life and played the cards that were dealt us.
I was also lucky enough to be bought up in rural New Zealand on a dairy farm. It was the 70’s & 80’s, our play ground was the healthy outdoors. We were sent out outside to find our own fun and learn from our knocks and bumps, not wrapped up in the cotton wool protective mentality promoted by the politically correct brigade that kids seemed to be subject to these days.
Don’t get me wrong, my parents certainly didn’t bury their heads in the sand and pretend that I wasn’t different to my siblings or peers, it was obvious that there was something wrong. I remember being poked and prodded and tested for all sorts of weird and wonderful things. Some of the diagnoses that my parents were given were early on it was Cerebral Palsy, then latter Morquio Syndrome, however my parents ( and myself) were never given a definitive diagnoses. Mum & Dad both confirm that although this did bug them they did not let it consume them. I personally think this non-diagnoses was a blessing as I was allowed and encouraged to have normal sort of childhood, and just got on with it.
I do remember the doctors repeatedly telling me not to participate in sports as it would damage my bones and was too dangerous. However I learnt young not to believe everything that comes out of a doctors mouth, and having the hidden trait that has developed in adulthood of “not liking been told what to do” I ignored these various so called experts’ advice, and played amongst other things rugby, hockey, badminton, tennis, touch rugby & cricket at various stages of my childhood, teenage years and adult life. Due to my condition I was never going reach great heights of sporting achievements but that did not stop me from participating nor my parents or friends stopping me. To this day I like to remain as fit as I can and am regular gym goer, social tennis player, and in the summer still walk 3-5km each day as exercise.
Both my ears have been the recipients of approximately 20 grommets each with the last ones put in while I was in my mid 20’s. My ear nose & throat specialist always said that I would grow out of needing them one day, I just don’t think he thought it would take that long. I got to the stage where I could almost self-diagnoses my ear aches and request another grommet be put in As a child I had my adenoids out twice and tonsils out once. But other than that that was the only real medical treatment I had as I was growing up. Obviously ERT was not on the horizon then, and in any case no one knew what I had anyway. Ignorance is bliss!
I completed secondary school and went straight into the workforce in the Bank of New Zealand as a 17 year old. It was about a year after this that my parents received a 1 page letter from the Paediatrician that we had been dealing with introducing a 1 page letter from Adelaide Children’s Hospital diagnosing MPS6. . Myself & my parents cannot recall if they actually showed me these letters or not. But as I look at them now it if quite hilarious at how little information is in these. I attach these letters to illustrate my point. Needless to say this diagnosis did not change my life or the way I was living it one little bit.
Once I hit my early twenties I did what most Antipodeons do and headed off to the UK for my OE with friends. I was away for just over two years before coming home and then actually spending 18months in Melbourne before finally heading back to NZ. I was doing all of this prior to even knowing what MPS6 was. Essentially I just got on with life. As I moved through my twenties I did have lots of time of pain. My hips were a constant source of pain and trouble, and I developed a terrible limp, which rendered me to get tired and was guilty of taking this frustration out on friends at times. I also become quite self-conscious of my limp and pain. However I do strongly believe in the power of mind over matter in dealing these issues, and continued to live life as any normal young adult would and do everything my peers were doing.
It wasn’t until the first study done in Adelaide in 2002 that I received proper notification of my diagnoses, at which stage I was 31 years old, and hence a normal adult living a normal adult life in Wellington. This is when the condition was explained to me in more detail and was given some actual real literature to read. Although this information was useful in understanding the condition, it did not have any true affect in the way I continue to live my life. Granted my condition is not to the severity as some others, but I do often wonder how much my childhood and the values of just get on with it that were engrained into me, and my stubbornness of mind over matter have contributed to this. Up to that point MPS hadn’t controlled my life, so why should it start now.
I participated in the Feb 2002 and was complimented as to how fit I was and how that did reflect in my test results and state of health. Later that year I had both my hips replaced, and was told by the surgeon after the operation that they had worn down so much he was amazed I could still walk. Once again though I did not know anything else, a little bit of pain was not going to stop me.
Now at the age of 41 I have learned to embrace the condition and use it to my advantage in the business world. Yes we look different but that is to our advantage as people remember us. This is especially relevant in a sales and or networking environment. We are more than just a boring business card or another name that people forget. We look different and hence we leave a permanent picture in their mind that will be remembered when they think or need our services etc. It is all about the power of our minds and how we can use our unique condition ( tools of trade) to better ourselves.
Don’t let MPS define you or control you, let it enhance you.