I live in Wellington NZ and have ms, which means I basically have a walking disability (amongst other things..) BUT it doesn’t mean that life has ended it just means starting over again. This is my journey and my family's too, and all the adventures we experience along the way!
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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 for creating a social-enterprise are still there (albeit refined), but what I hadn't counted on at all, was what the blog would do for me.
At first, it was fairly monotonous and a bit of a drag trying to come up with something to write about but after about a month or so I suddenly found that I was looking forward to writing and what WAS now a drag was coming up with interesting snippets concerning the jewellery………. Writing about my own circumstances and condition has become easier and easier.
It is cathartic and therapeutic to say the least!
The practical reason for switching platforms is better control over the blog and to seperate tākiri the jewellery from my own ms journey, the 2 are intertwined but will be both better served by being without the demands of each other..
A few years back I read another blog written by ANOTHER ms sufferer who was explaining how ms offered them the chance of rebirth and all the benefits that came with having ms. I didn't finish the page as I began to spew venom at the author…….At the time I felt like ordering an air-strike on this person……..not walking properly is somehow a benefit????? GET REAL!!
now I understand what they were trying to put across..
Having this disease DOES offer an unexpected albeit somewhat perverted ‘rebirth’ opportunity although I still have trouble with using ‘benefit’ within the context of having ms. It is a very bumpy ride and one that I had hoped I wouldn't have to go through but here we are. I have to constantly relearn how to do the simplest of tasks (how many cups and plates have I actually chipped??) and also how to approach all sorts of organisations for various means of support. My family and I have had to reinvent how to have a life as a family and that on its own is something that I will go into in-depth in another post as it is not well covered at all by health-care professionals and it is an area that affects us as ms sufferers very very deeply and deserves some depth. I say this as while we as a family were experiencing great darkness in our relationships there were few resources available to help and very very few people actually understood what it all entailed. Life goes on.
"A luta continua, vitória é certa" (The struggle continues, but victory is a certainty.....)
So its been quite a while since last I wrote anything and that hasn't been because I haven't wanted too, its been because I am dead tired by the weekend after a week of work.
In August this year, more out of a whim than anything else, I decided to talk to a large (and very prestigious) national arts company here in Wellington and see if they would take pity on poh' little me, my being disabled and all that, and to my shock and horror, they offered me a real job. The first 'real' one in 4 years.
The job entails me running the volunteers for the organisation (the "Friends") and maintaining and developing the philanthropy that is part and parcel of a 1000+ membership database. I am kept very busy administering the organisation and attending to the various - and many - vagaries that come with the position.
Having MS was the real kicker. It is like a shadow hanging over my every move. Although I have become very adept at its management …
I have been very quiet for a few weeks as things have gotten hectically busy recently. After A LOT of searching and many trials and tribulations, I landed a great job - 25 hours a week and utilizing my knowledge and experience in the performing arts sector. I am not saying where or what it is exactly but it doesn't pay badly, I am a manager and the other people I work with are really great and very supportive. Sometimes good things happen too…. I also went for my yearly appointment with the Neurologist. There was a new intern this year and he proceeded to examine me and ask how things were. Well, great actually considering that the medical profession has not come up with ANY treatment plan for me ever. To my shock and horror he said that I am eligible for a trial run of Ocrelizumab,shock as I did not think that I would be eligible and horror as the drug (which is not yet available in NZ) will cost - wait for it - $NZ67 000.00 for a single 6-month transfusion. I decided that as I canno…
Recently another ms sufferer (is there please a better noun to describe us??) posted a quotation on fb that made me sit-up and do an instant double take. It wasn't about winning or being nice to cats or saving whales or remembering people with cancer, it was this: Because if I tell the story, I control the version.Because if I tell the story, I can make you laugh, and I would rather have you laugh at me than feel sorry for me.Because if I tell the story, it doesn't hurt as much.Because if I tell the story, I can get on with it.” ― Nora Ephron, Heartburn Yes I have been battling for ages to say something coming even remotely close to this in its very apt and complete insightfulness. I admit with utter shame that I did not know who Nora Ephron was before reading this quote but now I have read some small amount of what she authored and I am utterly taken by the prodigious talent that this person had, (yes had - as she is now dead from complications arising from leukaemia). But I re…