Again please, from the top this time....

I spent most of my working-life pre-ms, in live entertainment and events and the working hours were very abnormal, so now in-spite of ms, or perhaps because of it I still find myself getting up after everyone has gone to bed and staying up until 4 or 5 in the morning (not every night…) So, at 01:30 I am listening to John Coltrane and Miles Davis in the headphones while I write this and the icy rain is persistently lashing the quiet street outside… So, you may have noticed that this is a new blog-platform and a new format to my blogs. When I started out blogging, it was 100% due to an idea from Suburban co-working here in Wellington, who were mentoring me at the time. I was their student and the whole mentoring-thing was a brand new idea, a bit of an experiment too. The idea behind the blogging was in order to help sell my range of jewellery - tākiri  - and get moving my idea for creating a social-enterprise involving other disabled people. Well the jewellery and momentum fo...

Recently northern Australia got hammered by cyclone Debbie (what a ridiculously innocuous name for a bloody cyclone!) and when the remnants of that cyclone hit over here it produced some pretty severe damage and flooding. So when they announced recently that ANOTHER cyclone (cyclone Cook) was on its way, the entire country battened down the hatches and braced itself for imminent destruction. I tied down the barbecue and loose-stuff in the garden, plus got out torches/candles/duct-tape and checked the emergency supplies of water. Also I charged up my golf-cart and made sure that phones were likewise fully charged. By 19:00 last night my wife was home from work after having stocked up at the local supermarket on emergency supplies and we were locked down and waited….and waited.  Well this morning there is a bit of a wind and the sun keeps breaking through the clouds that scud about at high altitude but the expected torrential downpour never materialised not did the trees all sta...

I forgot to mention the swimming episode in my last blog. 3 days ago the 3 of us went to our local pool at around 09:00 in the morning. I went with my walker as the distance is around 500m to the entrance of the pool and I figured that it would be good for me to put some effort into getting there despite there being easier options available. After 20m of listening to me swear and curse, my wife suggested that she fetch my wheelchair or a helicopter. But I in the interests of a stiff-upper-lip and BACKBONE (whatever THAT is) insisted on persevering with the walker. So eventually we all made it to the pool where I discovered that if I had bought my golf-cart I could have driven right up to the edge of the water quite easily. Next time then. After 3 hours of really good fun with my wife and 7 year-old son in a heated pool (my son annoyingly does the Australian-crawl really well) we left. The result for me was pretty awesome – greatly increased feeling in both feet and legs, arms well...

Yesterday, my wife, son and I drove 50 something km up the scenic Akatarawa valley where there was nooooo cell-phone signal and the bush closed in on the 15km long single-lane twisty twisty road. But at the end of this road in an almost Alpine-like setting was Staglands –  http://www.staglands.co.nz Staglands is a privately owned park/nature reserve that is so very pretty and generally so ‘nice’ that the admirer quickly runs out of positive adjectives with which to describe the place. I got bored saying how awesome the view of green green bush was, and very tired of constantly and very unnecessarily bringing to everyones attention the pristine unpolluted aspect of the park and the bountiful friendliness of the people working there.  I took my wheelchair and smartdrive along too as I have become very enthusiastic about trying out the various attractions that our fair city holds-up as ‘disabled-friendly’. Previously I visited our exceptional national museum called the Te Pa...

Recently northern Australia got hammered by cyclone Debbie (what a ridiculously innocuous name for a bloody cyclone!) and when the remnants of that cyclone hit over here it produced some pretty severe damage and flooding. So when they announced recently that ANOTHER cyclone (cyclone Cook) was on its way, the entire country battened down the hatches and braced itself for imminent destruction. I tied down the barbecue and loose-stuff in the garden, plus got out torches/candles/duct-tape and checked the emergency supplies of water. Also I charged up my golf-cart and made sure that phones were likewise fully charged. By 19:00 last night my wife was home from work after having stocked up at the local supermarket on emergency supplies and we were locked down and waited….and waited.  Well this morning there is a bit of a wind and the sun keeps breaking through the streaky clouds that scud about at high altitude but the expected torrential downpour never materialised not did the trees...

The past few years since being diagnosed with MS have been the most disruptive and abominable of my entire life. But not only has this disease screwed entirely with my life alone, but also with the lives of my wife and son. When I compare them both prior to 2013 to what and how they are now, it is humbling to see how much they both have adapted to, accepted and incorporated my situation, THEIR situations and me – into their daily lives. Also my stellar wife (who shall remain nameless in this blog…) has had to cope with dealing with a possibly irreparably sick spouse, moving to a new country, and coping – encountering – overcoming and BEATING much opposition and negativity to her in the workplace, as she got the burden of being the main bread winner unceremoniously chucked at her to wear. I look at them lately with great great admiration as they both are very different (in a very positive way) to what they were a few years back… Someone asked me recently how I was doing and I laugh...

My darling son who is all of 7-and-a-half, bought home from school a ‘bug’ the effects of which he got over in a day or two but which absolutely flattened me. It served to remind me that ms is a disease that affects your immune system and when the immune system is attacked your body goes berserk.  In the space of a few hours I became unable to walk upright, or sleep or see straight. It took a good week before I reset back to ‘normal’ again. I follow this guy Nick –  http://www.masteringmountains.org/about-nick/  – with great interest. He is about as close to a hero as you could get for me, and really serves to illustrate what can be achieved with enough determination, hard work and self-belief. I now live in a two storey house, and before I moved here was quite daunted by the thought of having to go up and down stairs. It was hell initially, and I would plan my day around only going up and down stairs once a day. But after 3 months….wow…now it barely bothers me at a...

Last week my 7 year-old son returned to school along with thousand’s of other children across NZ. He went back on Thursday morning and by Friday afternoon was already on another holiday as we in NZ celebrate Waitangi Day on Monday the 6th of February. So everyone in the country had a long weekend… I feel the need to talk about politics. All through the U.S election my wife would say how she feared that Donald T would be elected and I would go naaaah…….. because it just didn’t strike me as something that an informed and intelligent electorate would subject us all to. They cant possibly be THAT stupid can they? Well I was wrong. Generally I am not too engaged by the political goings-on in other countries, as it is all part of the ebb and flow of life in whichever particular country that may be happening in and does not unduly impact myself, my family or my community. However, with what happened recently in the U.S.A. It does. The U.S for all its myriad of failings occupies an enor...

I had a discussion with a parastatal/crown entity last week that left me feeling buoyant and more focused regarding the direction that tākiri should go towards. I also got co-opted into a focus group dealing with disabled peoples employment issues that sounds quite exciting too, so after my first meeting on the 15th of Feb I will report back on all that that entails and promises….. All throughout my long career and association with the performing arts industry, I never gave much thought to future changes in career path as I loved working in the performing arts and events industry and very naively thought that it would continue ad-infinitum. Now that I can no longer be part of that industry, and having to relearn half-forgotten skills and learn some new skills in order to make a living and have some purpose, I am facing the same quandary that I guess many other people face much earlier in their productive lives – I don’t like (most of) the work I do! Don’t get me wrong, I LOVE tāki...

Before moving to New Zealand we lived for 3 years in Qatar in the Middle East. The average annual temperature is around 35℃ and it can go up as high as 50℃. It rains so rarely in Qatar that when it does rain it becomes such an event that it supersedes everything else happening at the moment, it doesn’t rain torrentially (like the Indian monsoon) but splutters apologetically creating streaks in the dust on windows and on cars, but never heavy enough to wash them clean, so rain is more of a nuisance. You don’t notice the heat really (unless you are a construction worker) as you journey from well-chilled homes to freezing cars to equally cold work or shopping malls. When you do go outside away from AC the heat is utterly indescribable. When I up-sold the idea of moving to New Zealand (my paternal homeland) to my sceptical wife. I told her of becoming very sunburnt and of long days of heat looking at the balmy south pacific….. The day after we arrived here from Doha (in the middle of th...

In a another life-time that now seems a million years in the past, i used to be a lighting designer for shows and live events. So when I started out recently with tākiri and the taking of photos for what it produces I was very blasé about taking photos etc because i knew EVERYTHING about anything remotely technical involving cameras/lighting/colour temperature etc etc…well i don’t actually, in fact my photographic ability hovers between utterly atrocious and absurdly mediocre. It has taken me almost 3 months to finally produce a single photograph of the jewellery that is (a) in focus, and (b) brightly lit. Up until last week, all my attempts at photography resulted in pictures that seemed to be shot on a dark night at the back of a dark cave during a hurricane. I had tried using my wife’s canon DSLR, but as I am a nerd at heart had happily pushed all the buttons repeatedly until even my wife needed the manual to reset the thing as I had reduced a half-decent camera to being only ...

The holiday season has almost finished, and I survived…. I managed everything that was thrown at me over the last 2 weeks, from looking after three  7 year-old children on school holidays, to entertaining people to buying presents (online) to going to the beach. It wasnt a roaring success but we all got through it… Having ms means having to cope with fluctuating functional abilities on an almost daily basis. I was getting about quite ‘fine’ until I went to the beach and somewhere along the way for whatever reason, my mobility rapidly got MUCH worse in an amazingly short space of time. Also for an unexplained reason my lower back went out compounding my already tottering movements. Anyhow. The band plays on. Fast forward to today and I managed to submit an assignment to Openpoly technic which was becoming overdue, and also managed to take some more half-decent photos of the latest jewellery – the results of which are below… If anyone fancies any pieces please let me know at...