Life & Times of an MS Sufferer….. By Roger Deuxmont · March 31, 2019 Life & Times of an MS Sufferer….. These pages are dedicated to the following people, my father Leslie 1911-1980, my father was an indirect casualty of the smoking lobby, succumbing to the effects of lung cancer at the age of 69. He died as a result of Emphysema effectively “drowning” in his own phlegm. Maree Frances POMPEY 1944-1980, a dear sister-in-law taken early in life; Peter Francis HUNTER 1948-1987 -lost at sea; overboard off the Fiordland coast. (West coast, South Island) I have lost numerous friends and acquaintances through death from either accident or, since my return to Auckland, from succumbing to various afflictions, MS being one of them. A very good friend of mine, Rosemary Jane GIBSON 1964-1992, who suffered from MS and had done since she was 20. Her initial attack occurred in Sydney and it wasn’t long before she had to return to NZ where she lived at the Laura Fergusson Home until her death at age 28. Vicki Madden was a brave little battler who completed a BA (Bachelor of Arts) degree at Auckland University and was a ball of energy right up to her death in 1987. A little about me- The First 50-years (yikes!!! doesn’t time fly when you’re having fun!! 1952-1957 I was born in a tiny settlement called Paerata (pa/e/rata) on January 19th, 1952. Like most of my siblings, my birth was at home. My first “crib” was, as my mother recounts the story, a drawer (in a chest of drawers). Following my birth my mother, a hard working woman (one of my mothers forefathers was a JOHN BIDDLE, born in 1615 at Wotton-under-edge, Gloucestshire, England. (John was a founder of the English Unitarian Church) – John died in London on Sept. 22, 1662; mother of eleven other children (little Roberta died when she contracted influenza in 1944), went straight back to work. This was in addition to whatever else she was involved in. Paerata was a town centered on the local milk and butter factory. Paerata used to take its milk from the areas’ farmers (delivered by milk tanker daily) and either pasteurize it for local consumption and/or turn it into butter (I think caseine comes first?) My earliest recollections of life, or from what I can remember, came from when the family lived at Helvetia, a tiny settlement located on the fringes of Paerata. My first recollection is of a big house, probably the one we lived in, and a barbed wire fence. Oouch, you got it, I remember trying to negotiate my way through this fence when the inevitable happened, the first of many accidents…Later, I lived and was brought up in Pukekohe. We lived at 66 East Street, a quaint little weatherboard 3-bedroom (painted white with a red-brick tiled roof) house set on a quarter acre section. This being the first house our family had owned out-right, ever, so I remember we were oh so proud. Apart from a temporary shift to Penrose, in Auckland the majority of my life up till now had been in Pukekohe. My early-schooling was completed at Pukekohe Primary which, at the time, served primer’s one to four and Standards’ 1 to 6 after which I went on to secondary school, years 9-11. I was given the chance to go to Wellington, which I did, and lived with my sister Peti and her husband Neil Rogers. Peti, Neil and their three children lived in Porirua. While Neil, a former jet pilot with the Royal New Zealand Air Force, worked in the Public Service, Peti had been involved raising the children and also with quite a few community projects. It was through Neil & Peti that I actually got my first job. This was with the Department of Civil Aviation as a clerical assistant. After a period of time I was appointed to a clerical cadetship and spent the next three years learning the “ins and outs” of various departments and differing forms of office work. In 1970 I secured a position with NZNAC as a Flight Recording Clerk which was my first taste of shift work. I left NAC and went and worked for Claude Neon Lights (NZ) Ltd., While my job description was accounts & payroll clerk, I found myself doing anything and everything. This job lasted until 1973 after which I went to Wormald Vigilant working on alarm installation, both fire and security. In 1975 I underwent an appendectomy and following a term of rehabilitation, I returned to work doing among other things quotations, some selling and also putting some previously learned skills to work, I draughted some drawings for various projects that I had also done initial quotations for. I departed Wormald Vigilant in 1977. 1977-1978 I made the move from Wellington to Te Anau in 1977, purchasing a 1962 Morris two and a half ton truck and after packing all my family’s possessions on board I caught the Cook Strait Ferry from Wellington to Picton. The rest of my family, my wife Pamela (Irish origins), my two children; Kiri (3) and Peti (7-months) flew down ahead of me.. On board the truck, with me, I had 6 of my wifes beloved pot- plants, my dog and our cat. On arrival in Picton about 10pm, we (myself and the animals) set off, stopping for a “moe” (sleep) in Kaikoura, (the name, Kaikoura, translated from maori into english means literally, Kai(food)koura(crayfish)), wonders of wonders crayfish, a natural seafood delicacy, can be fished from the coast abounding Kaikoura, however I had to purchase this tasty morsel from a roadside vendor. My cat ran away in Kaikoura, I suspect he had devious thoughts on his mind. He reappeared just prior to our departure, I think he realised my calling was getting more and more urgent, not to put a fine point on it more and more strident, but fortunately he turned up just in time! Anyway, we arrived in Christchurch in the afternoon of the following day and I booked into a motel for what I deemed was a well deserved sleep. Cat and Dog were left to their own devices, Dog tied to the tow ball on the truck and Cat in the cage I had purchased especially for the trip. I still have this cage 21 years later. Prior to leaving them for the night I ensured they had been adequately fed and watered with a supply of water in case they were thirsty. The following day saw us make the trip down the Canterbury Plains to Timaru and then on to Twizel. I stopped for a break in my journey at Maree and Bill (Billymana) Pompeys’ place. Maree, my wife’s sister bless her soul, has since departed us dying in December,1980. Bill at last contact was resident in Cromwell and I have since lost contact with their children. Jenny (Jennys child is named after her sister Alana and was born in 1988) and Alana Woodford now live in Wellington; Jenny and Alana’s birth father (Alan) was tragically killed in a motoring accident in the early seventies. Bill Pompey therefore became their foster father following his marriage to Maree in 1972. Maree and Bill had three children, Lisa, Mana and Monique. Following a short stay in Twizel it was on the road again, this time through the rugged Otago Central, an old gold prospecting area of the South Island. After the long, and at times, dry trip I made “landfall” at Oamaru and then the short hop over to our in-laws, Pam’s sister and brother-in-law, at Waimate. Stuart and Val Cameron have two beautiful children, one to which I am the Godfather. Er, well mind you this was in 1977 and I have lost contact with Vanessa and Michael so they could very well have married and have families of their own. Anyway, I stayed with Val and Stuart for a couple of days during which time I went out with Stuart to pick up and deliver some stock to the abattoirs. Stuart was driving for a general carrier at the time in addition to working his farmlet. After an overnight stay, or two, I then set off on my penultimate trip to Queenstown where I stayed a night with my sister Roberta and her family. My eldest daughter, Kiri, would in later years live and work in Queenstown, for the local FM Radio station. My younger daughter Peti also lived and worked in Queenstown for a period. She was involved in “bungy” jumping working for “A.J.Hacketts (Scream Rides)”. I had noticed the sudden change in temperature, from warmer climes to sub-zero temperatures. This I had been warned of but unfortunately it would take a couple of stiff frosts to “wake me up” to the change which at first had been quite subtle but which would become my, and the family’s home for the next ten years. During the following months I tried my hand at, among other things, bulldozing which at one time almost came to a disastrous end. I remember one day clearing a blockage in a river on the outskirts of Te Anau, (at the time I was working for a general contractor by the name of Chris Carran) following an extended period of rainfall. It was raining the proverbial “cats and dogs” and had been for quite a few days. My “bully” began to disappear down a hole in the river and rather than have this happen,instead of bailing out I managed to maneuver my machine back to the bank. I think that that was one of the things that has reinforced my belief in a God. Chris was a “hard” man, he lived and worked hard and had put me on a 11-ton CASE bulldozer. I would transport this machine (on a 22-wheel IHC ACCO 2150 low-loader, 22tons all up) around the Fiordland area, up as far as the world renown Homer Tunnel, on the way to the equally world renown tourist resort, Milford Sound. Later I worked for a man by the name of Ken Harris driving a big Massey Ferguson tandem-wheel tractor, contract ploughing in the Fiordland area. This part of my life was definitely unforgettable. 1978-1984 During a period of job hunting I was pondering moving up to Twizel and securing a job on the Power project, probably earthmoving but, as luck has it, I secured a position with New Zealand Electricity administration at the Manapouri Power Station. For the next two years I was employed as a “bitza” or jack-of-all-trades handling a payroll of approximately 50-60 staff, station accounts and general administration backup for the various divisions of the power station. If you can picture it, Manapouri power station consists of basically, seven (7) hydro-electric machines generating 580+megaW of power at 220kV. The difference is that the machine hall is located almost 600feet under-ground. Water is provided to the machines through vertical concrete/steel-lined penstocks, (I’ve actually been down a penstock on a routine “penstock inspection”, this was rather disconcerting knowing that there were thousands of tons of water above you but fortunately, safety being one of NZEs prime considerations,(this wall of water is kept at bay by “stop logs” or custome-made steel “plugs” installed at the headgates) and each machine is capable of producing 320,000hp, I think you’ll agree that’s a lot of horses. One of my duties was reading and recording earth movement at the power station and also at the two lake control centres. Once a month these readings were collated and sent to the New Zealand Geological Survey. I was also responsible for daily readings of weather, rainfall and temperature including lake levels. These were all graphed daily/weekly/annualy which assisted in forward planning. Like I said, about 1980 I saw a chance where I could change my “profession” so I applied for and was accepted for operator training. Like every job you have to start at the bottom and that’s what I did, literally. My first job was three-weeks of day-shift, five days a week as sought of an orientation period. Yep! you guessed it, 600 feet underground. Each shift saw us take the 180-second plunge into the bowels of the earth for the shift change-over. It didn’t really take that long to acustomize myself with the surroundings, I had already spent two years “above-ground”. The position entailed rostered shift work, 3 shifts (7 x afternoon shifts on 1 day off / 7 x day shifts on 2 days off / 7 mid-night (Graveyard) shifts on 4 days off) During my time underground I acted as backup to the shift Operating Assistant which came as a welcome change. Each time my shifts’ OA was on leave I would relieve up to his position later on becoming the Shift Operating Asst The shifts were rotated every 28-days. Each shift lasted 8 hours but when you added in the amount of travelling time (two & one half hours) per shift you weren’t left much time out of the day for other things. In fact, a lot of my friends in the USA, Canada and Europe would agree, when you work hours like that there isn’t a lot of time to do much else! Go to work in the dark, come home in the dark. Unfortunately, I also got into the habit of imbibing a little too much. The wicked juice of the day was either Speight (a wicked, wicked beer brewed in Dunedin by some vintners of dubious origin, dig, dig!!) or, when I felt a little patriotic, Lion Red or another nice drop Steinlager hailing from Hawke Bay.My sincere apologies if I happen to hurt any patriotic feelings. Although you may not have heard of the first two, the third is fairly well known internationally and I am sure that a lot of people who have flown NZs international airline will have tasted Steinlager. Anyway, I am beginning to ramble on so to get back to the original storyline and to cut a long story short, I was becoming one of Manapouri’s worse exports and I can say it now, an alcoholic. 1984 I’ll always remember the day it (Multiple Sclerosis) struck, from being a carefree, reasonably athletic person I was suddenly reduced to a blubbering “wreck”. I remember arriving home from work (we used to commute across Lake Manapouri by 2 x 52 foot V8 diesel motor launches; the Motor Vessel’s “Resolution” or the “Moturau” and the trek, which is only a one kilometer walk, turned into a laborious 1 to 2 hour trip home. This started the “what happened?” syndrome, not knowing what had occurred, I visited my Doctor in Te Anau, a Doctor Trevor Walker, the next day. He immediately had me admitted to Kew Hospital in Invercargill for tests. At first they had thought I’d suffered a common stroke. How far from the truth could this have been. Following 7 days of intensive investigative treatment, including a trip to Dunedin Hospital for x-rays and a new innovation (at the time) a CT (computer tomography)scan; (this has of cause being superseded by the MRI Scan) where my Neuro-surgeon” an excellent scottish gentleman of impeccable taste”, following consultation with colleagues diagnosed my condition as Multiple Sclerosis. I tell you, it felt as though a tone of bricks had been lifted from my shoulders. I had been fearing a diagnosis of cancer and although MS can be considered just as bad, at the time I didn’t think so…You must realize, as far as I was concerned, life for me had ceased when I was retired from full-time work. From what I had read, I put my life expectancy at five years. 1987-1996 In 1987 I was retired medically, as a consequence of multiple sclerosis attacks of this debilitating disease. I came to the conclusion that I would be better off in warmer climes and so, after my subsequent retirement “booze up” , I was on the road again… After saying my goodbyes to all and sundry, including a very tearful goodbye to my two sweet daughters… Staying with my good friends Roger & Linda Lavers) Roger was the local Baptist chaplin for the Te Anau area, he had also baptised me in a swimming pool mid-winter in Te Anau, bbrrrr… I tell you, I felt as if my “pjama pants” had been pulled up tight, the pain was excruciating… I had also arranged for disposal of most of my worldly possessions before my departure and a carrier picked up the rest of my gear the day before I left. With after-thought, I now know I should have left, or sold, all but what I wore. However, staying my last night in Te Anau at Roger and Linda’s I didn’t even look in my rear vision mirror as I departed Fiordland for what I thought would surely be my last time. My first stop was at Balfour, friends I had made during my life at Manapouri. They used to farm on the outskirts of Manapouri but sold up and bought a farm just out of Balfour. This is in central Otago, I’ve been in some cold places but if you can imagine sitting in a Chest Freezer at -100C, well that’s what it feels like. “They breed them tough in Central” used to be the saying, I can sympathize, or empathize whatever…I remember being snuggled up in bed, warm as toast, then receiving a gentle reminder that I needed a final “pit-stop” before it was curtains or “lights out”. After bidding goodbye to my good friends, I set off for Taieri Airport just outside of Dunedin. I didn’t have to wait long and then the Boeing 737 touched down and off the plane ambled, and I mean amble my younger brother. Peter had agreed to meet me in Dunedin and assist with the driving through to Auckland. Anyway, Peter offered to drive the entire distance (approx., 1000km) by himself. I was relieved when he offered I tell you, he only got that chance once. It was alright by me… Even though I haven’t even been south of Rotorua since arriving back in Auckland, after an absence of twenty one years, I’ve made two trips across the “ditch”, to Australia one time to be groomsman at my brother Taawhi Kerehonas’ marriage to Kathleen Cavey in 1995. Oh, life is good…… Things I Like: Living, breathing eating fine foods, listening to all types of music, members of the opposite sex, my children Things I Don’t Like: people-type “bores”, rain and cloudy days, the cold or the humidity…. I hope you have enjoyed accompanying me on my trip through 23 years of rediscovery. I hope you have enjoyed reading, as much as I have done writing, it. PART II – THE FINAL RECKONING Well, hello again folks; I said I’d be back again didn’t I? Being a man of my word, I will tell you in a nutshell that in mid-2004 I set myself a goal, “to-be-in-100%-full employment-by-the-end-of-the-year!”. Well, to cut things short; on the 27th November, 2007 I was again, for the second time in my working career, medically retired!! No, this time it was not because of my MS but because of niggling problem that I’d picked up with my spine! I’d actually had an accident in 2007 which I say was work-related, but which the powers that be say is a result of the aging process!! How particularly insulting is that, I think that this is ACC’s way of “trimming-fat-from-the-hog”, so to speak!! Anyway, I am again a man of “leisure”, applying for jobs that aren’t there!!:) Okidoki guys, it is now 2019 and here I am again, alive and well and still getting around the town on my own two legs, without the aid of my hideous wheelchair and enjoying life to the full. Today is saturday, 29th of March and tomorrow folks, marks another milestone in my checkered lifetime. I never ever thought that I’d still be here (touch-typing) at the right old age of sixty, let alone being able to communicate via the internet, ce/llphone or more lately of course, my trusty old Android. But here we are enjoying life to the full and looking forward to my next 67 years, stop laughing!!:)