Just getting up and going to work by Phil Jones

My first memories of my younger brother Graham were bringing him and my mother home from the maternity clinic in August 1957. John Evans the Sunday school Superintendent and local shop owner, who had one of the few cars in the community, met us at the clinic and drove the two miles to our little cottage in Hawarden, Flintshire.
I was six years old and I carried Graham on my knee in a white shawl, I sort of looked after and looked out for him from then on as we were growing up.
Phil 2 Three brothers grew up together in a loving family home, we were an active, outdoor and sporting family and as I went on to play football in the local leagues Graham would come with me, that is until a new leisure centre was built down the road which included a full size ice rink, Graham suddenly disappeared into the world of ice hockey, training started at ten o’clock in the evening, and every evening, and he travelled all over the country, playing for the county and also achieving international call ups.
He left school to work in the nuclear industry, married, emigrated to Canada to work and play hockey and on returning to Wales a few years later had two children of his own.
Eventually Graham started to watch his son play football in the local leagues and his daughter compete in county and Welsh gymnastic events.
Phil 3All was well until one day, at 40 years of age, running after a football that had gone out of play he stopped and thought to himself ‘ I don’t think I will ever run properly again’
After many tests and sleepless nights the symptoms, effects and consequences of multiple sclerosis were well known and much discussed in the Jones household.
Graham and his wife Barbara were soon to discover that Primary Progressive MS just gets worse and worse with no periods of remission. Barbara was soon to discover that becoming a carer was not a career or lifestyle choice, and it wasn’t much fun either.
One of their early decisions was to do every thing they could to give their young children as normal a life as possible and for Graham, who had a strong work ethic, this meant doing all the things that dads do including carrying on with his job, seventeen years later he is still doing it.
‘It’ being a job as a systems design engineer in a competitive market place. Graham had moved from a secure position in the nuclear industry to self employed status, firstly with Unilever research and then for the last 17 years in the petro chemical industry working for a company who are the world’s only manufacturer of lead additives for specialist fuels.

Phil 4Nothing really remarkable so far? one of 100,000 sufferers of MS in the UK.
So its bed time Graham, you can’t stand, you can’t walk, you can’t take off your shoes, socks, and clothes. Well actually you can’t do pretty much anything at all.
So its Graham’s bed time Barbara, oh! in about 45 minutes so let’s get started right now, swing out the stair lift at the bottom of the stairs, move the cumbersome hoist out from the corner of the dining room, find the straps and body harness and using the hoist lift Graham from his chair and using all of your strength push the hoist with Graham into the hall and lower him onto the stair lift.
Power up the stair lift and off we go to the top floor, making sure you walk up first and are ready to manoeuver Graham onto the small wheelchair situated at the top and into the bedroom. Using the hoist in the bedroom, the one with the track in the ceiling, lift Graham from the chair and track the hoist into the bathroom. Undressed and bathroom stuff, that’s not as straightforward as it sounds, and then back into bedroom via the roof mounted hoist, carefully negotiating the contraption so that Graham is in bed, not just in bed but lying comfortably because he isn’t really able to move himself once lying down. ‘This isn’t what we planned our life out to be’ says Barbara. All the equipment around the house wasn’t how they wanted their home on the outskirts of Chester to look like either.
Before you know it, time to get up, same procedure in reverse, eventually Graham is downstairs eating the breakfast that Barbara prepared as well as the getting up, getting dressed and down the stairs stuff. Now he is sitting in his motorised wheelchair. Oh did I mention that he only has the use of one hand after slipping in work on washing liquid that had spilled out of a two-litre bottle that had been used to keep a bathroom door open. Health and safety at work, aye it’s got merit I suppose, especially if you use crutches to get around.
Until the accident at work Graham could just about get around using his crutches, but a broken shoulder and collar bone, followed by the insertion of a metal plate quite a long period of recovery and muscle wastage put paid to that.
At 0800, almost two hours after getting up, the doorbell rings and the driver of a converted taxi says ‘Hi Graham’ same routine five mornings a week and sometimes Saturday if there is an emergency call out from work. Graham drives his motorised chair out of the house, up the ramp and into the back of the taxi, a manoeuver that Lewis Hamilton would be proud of.
Off they go on the fifteen mile journey to the Merseyside chemical works, Oh lets not forget about Barbara, young wife and mother one day with her whole life ahead of her, the next and for the future, a carer. Barbara’s own day hasn’t started yet.
It’s Carers week in Dumfries and Galloway starting 8th June, might be worth calling in to get an insight, probably be quite surprised how good it would be for us to become a Carer Positive Employer.
Phil 1Back to Graham, he is at the factory gate, reverses out of the taxi and down the steep ramp backwards, abseiling would hold no fears for him, no mean feat for anybody, and like the rest of the guys once in the plant he is just one of the boys, well not quite, he is the only senior systems engineer they have, responsible for the flow control systems that blend all of the different chemical compounds in the various batches.
I did mention that he could only use one hand didn’t I, ‘how many do you need to operate a keyboard’ he says.

So single-handed Graham has worked full time in a technically demanding environment on a self-employed basis, paid off his mortgage, put his kids through further education and into employment, topped up his own professional qualifications at night class, held down a top job for 17 years despite crippling MS and is the most positive and courageous person I know. I think I might just be quite proud of him.
Oh and how did this story start? ‘Just getting up and going to work’
Well that’s nothing at all, unless you’re the Carer of course.

Phil Jones is Chairman of the Board at NHS Dumfries and Galloway. 

11 thoughts on “Just getting up and going to work by Phil Jones

  1. Great blog! A terrific insight into the reality of being a ‘carer’, as well as the power of an inspiring individual to deal with ‘disability” (as it might rather glibly be referred to) head on.
    A great way to get us ‘up and of to work’!
    Thank you Phil

  2. Phil, thanks for sharing this story, it is genuinely inspiring and a really good way to help people see the reality of a caring situation…and the power of individuals to overcome adversity

  3. Excellent story to share Phil, really puts a lot of things into perspective. Only an hour ago I was moaning about the kids taking too long getting dressed and holding me back from getting into work!!!! Thank you

  4. Thank you for sharing this inspirational example of determination and strength. It’s a reminder that we should never ever take people or things for granted.

  5. Sad and inspirational story. In the hospital situation we often say to patients ” who is with you today?” and the answer is “the carer”, a person who we just take for granted and goes unrecognised. We all have a lot to be grateful for and as we don’t know what the future may bring us, every day should be valued, even if it is just to get up and go to work.

  6. An inspirational and humbling story. Your brother and his wife sound a remarkable couple.
    An inspirational and humbling story. Your brother and his wife sound a remarkable couple. Thank you for sharing.

  7. Phil, The first (and sadly as it turned out the only) time we ever talked was after Choir one evening in the pub in Loreburne Street. I wittered on at length about how I struggled with Transverse Myelitis (a sister to MS) and you told me about your brother. It stuck me then as it does now what amazing person Graham is. I won’t say inspirational cause it takes more than that to get me through a day – but more “there’s someone out there that knows how it feels.” Thank you. S.

  8. I am honoured to know the family and my overwhelming memory of them all is their determination to keep everything as “normal” as they are able. But most of all is their humour and happiness as a wonderful family unit is to be admired. Love you all. Sue K

  9. Thank you Graham Jones for allowing your brother to share you and your family’s story. An old colleague of mine used to say that whatever is going on in your personal/home/work life you will generally always feel better for getting up and getting on with life whether that’s work, home, caring etc and hearing your story simply reinforces that for me. Best wishes to you all.

  10. A moving story of how people find the inner strength to rise above it when their world is turned upside down. I work with physical disability, mainly MS under 65. Learning to live with MS, coping with diagnosis, the symptoms and effects on family life is one of courage. The changles for the carer and cared for are daily, but your brother and his family remain united, honest and positive and will continue to re-invent themselves whilst retaining a sense of humour. Best Wishes and thank you for the story.

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