tākiri

...So I have multiple sclerosis.

I am not going to go into the why/wherefore/what entailing my affliction with ms, it is enough to know that after I was diagnosed in 2014, I approached having ms pretty much as a kind of obstacle course complete with various challenges that were all highly manageable and that shouldn't provide my life with more than a kind of irritating speed bump.

Hmmmm…in retrospect I misjudged that part a tiny tad…

The reality was that it threw the lives of myself and those of my dear long-suffering wife and young son, upside-down and inside-out. The effects of having this disease are far-reaching and the consequences are often quite hard-core.

I could go on and on about life affected by ms and all that this entails but lets talk rather about work.

For all of my adult working life I had a long and varied career in theatre and events principally as a technician to start with, then evolving into a lighting designer and finally as a branch manager and project manager. Both my parents had long careers in theatre and I have cousins who are musicians, poets and playwrights, and a brother who is a ballet lighting designer. It never ever crossed my mind that there would ever come a time when I couldn't work in this field and I always planned ahead when possible making sure I had the newest technology that would give me an edge over others in CAD design or show planning or lighting design. This way of life took me to 76 countries over 20 years and I became quite blasé about working in Monte Carlo or onboard a brand-new cruise ship.

I never gave any other possible eventuality much thought at all…

That all changed somewhat quickly when I realised that I was no longer able to move about very easily at all, in fact there were times when I actually couldn't walk and that is a quite big problem if you want to work in events or theatre…..but no biggie! Just ‘change jobs’ thats gotta be easy right? whats hard about that? Well, its pretty hard normally when you decide to ‘change jobs’ and nigh-on impossible when you are disabled and uh….did I mention that I am also 50? Yeah that little detail might have some influence too…

Well then fast-forward a few years and I now have a folder on my computer containing over 100 ‘thank you for applying but although you are qualified for the advertised position we found someone more qualified…..’ letters. Even got flown to Auckland for an interview. Even though I applied for everything available and relevant to me, the results were all the same. Nothing. I DID find some contract work, but nothing ever came about that was long-term.

Oh, by the way. While it is illegal in NZ to be gender-specific in a job description, a position requirement for someone with a ‘bubbly’ personality for some reason does not translate into a balding 50 year-old guy with a walker, although I am more than capable of being very bubbly and even bursting into song after a bottle of pinot noir.

So what to do then?

When I was younger (like 25 years younger) and living in Cape Town, I entertained myself making ear-rings and bangles made from ‘curiously designed’ beads bought in a quaint arts shop around the corner from me. Friends saw these creations and before long I was making and selling them to friends, flea-markets and art galleries for a small profit and on a regular basis. Then life intervened and I went and lived in a casino resort far far far from anything remotely artistic…and that was the end of that chapter.

Until I came across the very same beads again.

This time online.