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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Into the wild....
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 Papa museum, and the waterfront in the city, and these are both excellent for anyone in a chair to successfully navigate. Also, I tried the police college in Porirua where there is an ornamental lake with a 2km walkway round it – likewise excellent to use. Staglands was a challenge. Getting into the actual park was alarmingly boisterous and features a long 30 degree gravel-covered slope that if it were not for my wife standing in front of me, I would have careened head-long into a duck pond. Once down on the ‘flat’ surface I negotiated the attractions that were within easy reach as going a bit further into the park appeared as bad as getting into the place.
My wife and son went on tractor rides and explored further around us and I chatted to the very friendly manager and some visitors to the park who maybe thought i was an attraction too (???) Also the bird-life in the park seemed to find me alluring and I made friends with an australian cape barren goose (google it) who followed me round like a Labrador.
I would recommend anyone visiting Staglands in a chair, to also use a ‘freewheel’ attachment as ALL the paths are covered in loose gravel and a wheelchair just doesn’t quite handle it on its own. Also the smartdrive unit just doesn’t work on loose gravel – at all. When we left, we had to ask a stout and enthusiastic visitor to push me back up the hill as even if I’d got out of the chair, it would have been very difficult for me and my wife who pushed me… I will buy a Freewheel attachment later this year… – https://www.gofreewheel.com –
Later next week we will explore Zeelandia park – https://www.visitzealandia.com – which says that it is VERY disabled friendly, so I look forward to that.
When we got back to our car, the first thing that we noticed was that the lights were still on.. and of course it wouldn’t start so a call was made to AA (automobile association) who sent out someone who took about 70min to get out there as the place is seriously off the beaten track. All the while that we waited for AA to arrive, we watched the sun slowly start to disappear over the mountains and the cold start to creep up to us and we imagined having to spend the night in our small Toyota overnight……with NO CELL SIGNAL. Horror. Horror. Horror.
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…