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I was really only diagnosed with having a rare disease, the first time, because of a pretty bad hospital experience.
My walking had been getting progressively worse, over a few years, mostly down to foreshortened / ‘tethered’ Achilles tendons. Simply put while the rest of me was growing at one speed my tendons either stopped growing, or became tangled up. Either way I was forced to walk on my toes, getting progressively higher and higher, as time went on.
Physiotherapy was tried, as was corrective shoes and splints, but nothing worked. My tendons were simply too short/tight to be fixed by anything short of surgery. So in late June I went into Musgrave Park Hospital, in Northern Ireland, where a top-class orthopaedic surgeon repaired my tendons … one part lengthening, one part additional material.
I woke up a few days later in ICU so don’t actually recall what happened personally; my mother does, unfortunately. It wasn’t a great experience as I reacted badly – very badly – to the anaesthetic and, due to malignant hyperpyrexia, pretty much died a little. Now, in most works of fiction, that would be enough to put a protagonist through, wouldn’t it?
Well, unfortunately for me, this was my real life and not a story.
I spent a few weeks in heavy plaster, both legs from the toes all the way up to above the knees. After that I had the heavy plaster casts removed and slightly lighter casts put on – again, both legs, up to the knees. Finally I had a fibre glass type cast put on (yes, both legs, up to the knees) but this time they had little plastic/rubber things on the bottom so that I could walk on them.
Only, I couldn’t.
Keep in mind that for about 6-8 weeks I had been in a hospital bed, ankles/legs still recovering from pretty major surgery, and with casts on that were very heavy. I hadn’t been mobile in the slightest so it came as a bit of a shock – for me, my family and the medical staff – to find out that I couldn’t move my legs.
I could feel my legs, though the sensation was muted, but I couldn’t lift them, move them or bear weight on them. Now, obviously, this was a few years ago now (24 ish) so all the details aren’t exactly clear but there doesn’t seem to have been too much of a worry at that point. I’d been in hospital for a couple of months, bed-ridden for the first two weeks, then in a wheel-chair thereafter … I’d even been allowed home for a weekend, at some point – this is very well remembered as I had to have a lot of help doing anything and my mum, bless her, pulled both legs out of bed at the same time and the weight of them propelled the rest of me out of bed, head over heesl, to the floor. I’d love to say that we laughed but, we didn’t; SHE did. For quite a long time as I recall!
Anyway it was only when the plaster casts were finally taken off that the extent of the trouble became obvious. My legs were obviously always going to be weak. They’d been constrained in one position for a long time. The fact that I still couldn’t make them move – the fact that my sensation was still negligible – and, most importantly, the fact that automatic reflexes (to pain and stimulus) didn’t do much at all suddenly brought home the fact that I couldn’t move. I couldn’t walk. My legs simply wouldn’t work at all.
Now this was rather worrying (that may sound like an understatement but bear in mind I’m British, with a military background, and you’ll see that ‘stiff upper lip’ is a well known medical condition too ) and for a longish time I went through a LOT of testing and other medical stuff:
– I was fitted for plastic splints – full and half leg ones – that I would end up wearing for many, many months.
– I had nerve conduction tests, MRIs, x-rays, lumbar punctures and other things that I don’t recall.
– I was put through a really intensive regime of physiotherapy, hydrotherapy and rehabilitation.
– I was taught how to use a wheelchair and integrated into a community of other users – spinal injuries, amputates, etc. I actually have a trophy, somewhere, for winning a wheelchair-bowling tournament.
Over time I managed to get some limited movement and control back in my legs and was then transferred to different walking frames – starting with a contraption that I was strapped into from my chest down which basically supported all of me, then a full body walking frame, then a zimmer frame, etc.
Eventually I managed to take a few steps around the ward on my own, just on crutches. This was December 18th and a week later, December 24th a war of words took place between myself, my family and the medical staff and I was discharged – over six months after I had first gone in for a ‘routine’ operation.
Unfortunately, as we found out, nothing is ever routine when a rare disease is involved. My genetic quirks meant that I reacted badly to the anaesthetic and, ultimately, my muscles didn’t recover from it, the reaction itself, or the surgery, the way that they should have.
Six months in hospital, with a period of time wondering if you will ever walk again and getting used to using a wheel chair, is definitely not routine. However, getting OUT of the wheelchair and, eventually, making a full recovery, is also not routine. The majority of people who end up in a chair spend the rest – or the majority – of their lives in it so I realise how lucky I was, and am.
It took about 9 months, or a year, to actually get back to normal after leaving hospital. Obviously I still had to contend with the fact that my legs, and body, were extremely weak – I couldn’t walk far or do too much at all without having a rest. I suffered from appalling cramps and pain for a long time (still do, actually) and because I had spent years toe walking I had to learn how to walk again as no part of my body, posture or balance was used to walking properly.
It was a very difficult time and I was told to expect a long and challenging recovery, with compromises and changes needing to be made. One of these, I was told, was that I wouldn’t be doing anything too strenuous for a while and definitely wouldn’t be doing anything ‘dangerous’ or potentially damaging.
So, of course, I took up martial arts the moment that I had the stamina, and balance, to do so.
Thankfully my instructor – while being an ex army guy, from the Midlands of England, and a bit of a hard man – was also someone who never expected anyone to do anything more than they were capable of doing. That isn’t to say that he never pushed people – or me – to their limits. Oh my God but he did that, time after time, but he also realised that – at the start, at least – that I had physical limits. He worked with me, on those, for many, many, years. I will always complain about the hard times, about the nights I came home from class exhausted, or covered in bruises, or with clumps of hair missing from my head (wrapped around his fingers, normally) but I will always look back and be so – SO – grateful for the lessons he taught me.
Not just about martial arts but – as anyone that has really studied them will understand – about life in general as, to do the former well you have to let it envelop the latter.
I spent every possible moment, for about four years, training, studying and exercising. My whole life, at that time, was kung fu, my academic studies, and my social life – in that order. The fact that the majority of my friends were in the kung fu class wasn’t an accident either. It was, you see, my life.
It was also the thing that taught me the one lesson that is a blessing and a curse; the way that I have to live my life, thanks to the rare disease.
I have to work twice as hard to be half as good as everyone else.
That used to really, really annoy me. Anything that requires anything remotely physical can be challenging for me – not impossible, not beyond achieving, just difficult. I look at other people – now and back then – and see how easy things are for them – things that they take for granted. Things that I have to work at, to push past discomfort to do, that will take something out of me and leave me weak, tired and sore the next day (or hour).
I used to train four or five days a week, every week, in kung fu just so that I could keep up with the people who were training one night (90 minutes) a week. Mentally I was better than them, I was picking things up faster than most of them, but physically I wasn’t half as good as them.
But I sure worked twice as hard.
I had to.
Nowadays that lesson – working twice as hard to be half as good – is still with me in everything that I do. The mental – and physical – dedication required to study martial arts, for example, over an extended period, has helped me with every aspect of my life. I never look at anything that I am required to do and think that I can’t do it – I simply accept that it will be harder.
And do it anyway.
Twice as hard to be half as good is how it started and, to be honest, how it still is sometimes. Rare diseases – limitations – physical differences – however don’t always mean that you aren’t as good as others; sure, you may not be as physical fit, or strong, but that isn’t the same as being as good as.
I started kung fu twenty three years ago, mostly because I was being stubborn and wanted to prove the doctors (and possibly my own fearful mind) wrong. I worked more than twice as hard to stay half as good as my peers for a while and then, guess what, something happened:
I was working twice as hard but becoming better and better – not stronger, or fitter – but better. Twenty three years ago I started kung fu and, now, I still teach classes twice a week and hold four black belts.
Everything that came before led to everything that I do, and am, now. Just because I have a rare disease or two doesn’t mean that every part of my life is predicated by, or affected by, it. Just because I have to work twice as hard doesn’t mean that it is difficult, or not enjoyable, all of the time.
I could be dead; I could be in a wheelchair; I could be so much worse than I actually am but I am none of those things.
I am simply me; and that is because that is what I have fought to be.
I won’t ever stop doing that.
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@rarediseaseday #raredisease #rduk