As the hill snow was relentless, so were medical interventions early this year. After seeing my local GP, there was notification that I had a moderate inguinal hernia. Whether this was due to rolling snowmen in the park or performing acrobatics with the kids, I elected to have it repaired. A happy time followed as I remember convalescing on the sofa and watching trees blowing in the breeze.
As spring turned to summer and with my convalescence now complete, I returned to “business as usual“. I enjoyed taking a bath each morning before work as this seemed to settle the spacticity in my legs, whilst dousing the uncomfortable burning sensations in my fingers and toes. Elaine remembers, ‘You kept waking up in the middle of the night- like 1am – and thought it was morning. You would get up and start running a bath, then go back to bed and sleep. I sometimes heard it and woke you up and we stopped the tap, but one night I slept though it and it flooded the kitchen downstairs.’ From what I remember, a lick of paint to the ceiling and a mop to the floor was all that was required to restore some semblance of normality!
As I had suffered two relapses in 18 months during 2010/2011, I qualified for disease modifying therapy. So to Salford Royal where, after skimming through the fact sheet, I decided on the least-worst option. That was Copaxone and I was issued with an injector ‘pen’ and a box of syringes. I was instructed to inject into excess fatty tissue. Luckily, I was starting with love handles, so this was no problem. I do recall showing off my new device to my family, but instead of locating fatty tissue as I was directed, punctured the back my arm which was not flabby but still quite muscly from running. As my muscle twitched and cramped, I remember writhing around the floor in agony.
In July, I felt ‘in control’ of my condition and was upbeat. Here is my message to a friend whose mum had recently been diagnosed with MS. This now reads more like a letter to Father Christmas with child like naivety. I have left the typos uncorrected for illustration.
“She will get fatigue as part of the condition. Add to this potentially being up in the night to use the toilet (another thing!) so you need to address this part of your life. I only work 4 days in the office and one from home these days. I find this helpful. Some people also claim to benefit from a monthly vit B12 injection. I have this although havn’t benefited noticably.
“I have to accept that I will be a bit off balance (I do balance exercises), a bit tired and my vision is not great. I definitely do not consider myself to be ‘disabled’ though and tend to stay away from support groups and newsletters etc. I know that everyone’s different though.
“Remember that the aging process is a form of function degradation – MS just takes you on a slightly different tangent! A cure won’t be too far away, probably through stem cell treatment. You don’t have to be defined by the condition, you just have to take care of yourself a bit better (I reckon MS sufferers will be amonst the healthiest pensioners!). Remember that it’s not a terminal condition, just a few life tweaks are needed to live with it!”
I continued at Mamas & Papas where I started with a lunchtime walk, firstly on my own, then with friends – just a short one in the semi-rural surroundings. This would mostly be problem free although there was one walk down the nearby canal when I came to a grinding halt due to fatigue one hot summer day. This caused my boss’ eyebrows to raise when I eventually staggered back to my desk.
The eye hospital continued to write and I dutifully attended their appointments for a while. My biggest fear was that my symptoms would worsen, that my diagnosis was more serious than first thought. I was ‘testing’ myself – I remember straining to read car number plates in a moving car – with only my cloudy left eye uncovered. This was a pointless and rather dangerous exercise.
Disinhibited behaviours are ‘actions which occur when people don’t follow the usual social rules’ according to Wikipedia. I would learn later that such behaviour can be derived from damage to the frontal lobes of the brain, those areas affected by progressive MS. Inappropriate behaviour did start to show up at work. This made me popular with my colleagues although less so with my line manager, who saw my lack of boundaries, rightly, as a threat to the productivity of his team. My friends made ‘appropriate’ and ‘inappropriate’ flags – waved for my offbeat utterances!
There are some events that remain encapsulated in your memory banks – events that hold some significance. For me, it was Manchester City winning the Premier League title that year. That stoppage time winner, “Aguerroooo!!” I also remember that my symptoms surfaced, as I jumped around Elaine’s mum’s front room. For the first time, I felt a strange lack of tension in the muscles of my left leg. As I jumped, those muscles remained soft and started to twitch and tremble.
Elaine and I holidayed in Egypt. It was intensely hot – 50 degrees – and I struggled. I noted at the time, “I went to lie in the sun for a while and I went a little funny. Anyway 10 lengths later I was A-OK and embarked on the shuttle boat down to the Winter Palace”. I later learned that I had heat-sensitive MS.
Soon after, we went to Aberdeen with Elaine’s family – her mum Natty plus Gill and Steve Wilcock and their kids. Natty was scattering the ashes of her husband David, who sadly passed away in 2010. We travelled by minibus, on loan from Steve’s work – Greater Manchester Police. It was a long journey and on reaching our destination, I insisted on going for my ‘traditional’ swim in the sea. Elaine and the girls looked on in distraction.
We moved to High Crompton in 2008. The area, according to Wikipedia, ‘comprises residential housing, but also contains Crompton House Church of England School, St Mary’s church and its accompanying primary school of the same name. The area also boasts a public park with Green Flag status, appropriately named High Crompton Park’. I thought that this was a nice area to bring up the children so I bought an attractive stone terrace house which backed onto the park, faced the primary school with the secondary school around the corner.
As a responsible member of the community, a parent of children who attended the primary school and with aspirations of their place at the well regarded secondary, I dutifully attended the Church every Sunday. Disclaimer: sometimes I managed to skip half the service. The children attended Sunday School across the road and if I timed it right, I could join the line of children filing into Church at the halfway point. After approaching the altar I would receive a blessing. This rouse worked well for a while but as heads began to turn, I started to attend the full service.
Some time later when I was called into Father Alan’s vicarage to receive the girls’ accrued ‘church attendance points’, he acknowledged my Buddhist faith. I thought that he may have caught me meditating at the back but unknowing to me, one of the girls had mentioned that I burned incense in the house. As I had seen him ‘enjoying’ the Beer Walk the previous year, perhaps we had a quiet understanding!
As the kids and I attended the church in various permutations, Elaine typically welcomed us back to the house with jacket potatoes for lunch. Some time in midsummer was no exception as Elaine recalls, “I was outside with the girls and talking to our neighbour, you were inside the house and the potatoes were in the oven. You then came out and locked the door behind you with the keys still inside. As the upstairs window was open, you borrowed some ladders and climbed through. Noone know you had MS and that you were wobbly on your feet but I wasn’t happy about it.”
In September I became a Mitra (which is a Sanskrit word for friend). It means deepening your friendship with the Triratna Buddhist Community and making a formal commitment to practising Buddhism in a simple, public ceremony.
My Mum, Dad and Elaine came to support me as my friend Paul remembers “I was trying to convince my wife that there was nothing weird about my Buddhist friends and she agreed to come to the ceremony. Jay is a bit extreme and kept hugging me which would have seemed a bit unusual to Carol! But she saw you and Elaine as ‘normal’”- normality is what I craved! I remember my dad giving me a rare hug whilst my mum wrote in a card “I know that the Old Testament is askew but these are the most appropriate words we can find from our experience” and quoted ‘Love’ from Corinthians 13:4-8, adding ”This bookmark was Grandma Flair’s; no better person – for me – to hold high and close”. They gave me their prose poetry book The Prophet by Kahil Gilbram – “I hope within a Buddhist framework you can give your own interpretation to He, Him and His.”
I took the opportunity of reaching out to Antony whilst researching this book. I asked about his recollections of our Mitra ceremony and he replied in typical esoteric fashion, “When the iron bird flies and horses run on wheels the Dharma will come to the land of the red faces.’ In the words of his hero John Martyn, my response is “Go easy!”
Elaine, Antony and I went on retreat, again to Castleton and I remember reading “How to be Sick” together with him. The book is dubbed as “A Buddhist-inspired guide for the chronically ill and their caregivers” and requires some intense introspection. A lighter moment did arrive, as Elaine and I were spotted kissing whilst out walking, by a bemused order member!
The Decree Absolute for my divorce was issued on 26th October and soon after that, the kids, Elaine and I chased the bright lights and rain soaked sky of Blackpool. I was keen to make an honest woman of Elaine and as we sat with the girls in squelchy wet shoes in the foyer of the tower ballroom, Elaine said “not now honey“ as she sussed out my impromptu plan. A more suitable venue for my proposal was found at the Wine Press on Hollingworth Lake a few days later. There was a single rose and a favourable response.
In mid November, Elaine and I hired the function room at the local cricket club. A questionable karaoke was courted and meat and potato pie warmed for our ‘New Starty Party’. Elaine shuffled uncomfortably as I insisted on duetting with her to Dean Martin’s ‘How do you like your eggs in the morning’ in front of the captive crowd. They were suitably polite apart from my old friend JT, who congratulated me on my courage and conviction – if not my perfect voice! I would learn the meaning of emotional integration later in my Buddhist studies and this remains the point in my life where I was most ‘unintegrated’. I effectively presented a different ‘version’ of myself to my disperate and unconnected assembled groups. I found the experience quite exhausting!
Elaine’s sister Gill very generously paid for us to go to the Lake District as she was in receipt of some inheritance. I remember an opulent Jacuzzi in our room. Less comfortable was a walk in Newby Bridge where I my legs wouldn’t comply with a short walk. So we followed the road around the side of the lake back to the car.
Just like at the start of the year, I begrudgingly struggled with my surroundings. Earlier in the chapter I mused that normality is what I strived for. However, the incident with the ladder, my swim in the sea and my letter to a friend, tells me that this was the year of sticking two fingers up to MS. Becoming superhuman, defying the odds. “I have MS but it wasn’t going to have me”. And other such bullshit.