“The secret of life, though, is to fall seven times and get up eight times”
Paulo Coelho, The Alchemist
When Dr Simon Nightingale, the now retired neurologist at Shrewsbury Hospital told me on that sultry July day in 2009 that the results of the MRI scan had confirmed that I had multiple sclerosis my first reaction – believe it or not – was relief.
I’ve read since that often people who are given news of sad, chronic or even terminal illness react with a strange euphoria. For me it was relief because I had started to work myself into an anxious frenzy, convincing myself that it was a brain tumour that was causing the loss of use in my left leg, the numbness and pain in my lower back, the wavering loss of eyesight in my left eye.
MS is a nasty, pernicious beast. It creeps up, takes a silent grip and then turns the screw month-on-month, year-on-year. Looking back, I had been showing early signs of the illness two years before the diagnosis, but the chronic tiredness, cold and numb feeling in both feet I had dismissed as stress and possibly early warning signs of the peri-menopause. At the time my working life was particularly tough. I had just been appointed as director of the Hive in 2007. My new role had certainly not been greeted with universal approval and I was dealing with a divided staff team, those who were extremely positive and supportive and then the few who were decidedly hostile and negative. I suppose I can only describe those few years as a sportsperson might: extremely bruising and energy sapping.
Processing the news of the diagnosis was alien territory for me emotionally. Even my GP had expressed her surprise at the conclusion of the exhaustive tests, the visits to doctors, specialists, the scans, the needles, the constant questions and enquiry into every small bodily function. I had never displayed any signs or what is known as an ‘episode’ or anything that might have led toward a clue for the eventual diagnosis of multiple sclerosis. The professionals were equally as perplexed as I was. Meanwhile I was trying to keep my head above the choppy waters at work and managing my children who were 16 and 13 at the time and aware that I had not been functioning very well at all for over two years at home. We had moved to Shrewsbury in 2006 – someone somewhere had decided to have a good laugh at my expense I later mused. A 3-storey town house- perfect for someone about to be diagnosed with multiple sclerosis!
I had been a healthy person for 47 years – bar minor niggles – so it is hard to imagine ever leaving a doctor or a hospital without thinking ‘I will get better soon’. The trajectory of chronic long-term illness in the real world is that ‘this is only going to get a whole lot worse’. It is however hard to predict. You will constantly hear people afflicted with such illness to say that some days are ok and other days are really very bad. I was confused by this mish-mash of thoughts to begin with but as time has worn on that summation of (MS anyway) is very accurate indeed.
Dr Nightingale was a delightful man who I fell hopelessly in love with in the 45 minutes we spent discussing what I could or might expect in the years to come. His voice would melt marshmallows and he had that presence, the consummate ease of a man entirely comfortable in his own skin. Confident without a whiff of arrogance, a very attractive man indeed. I have never forgotten his prediction for me was that ‘the trek to Kilimanjaro would be unlikely, but the Shropshire hills was always possible’. He had a reassuring twinkle in his eye and oozed charisma. There are very few men with such star quality. I imagine being in a room with Barack Obama would reduce me to a simpering imbecile. Some men have just got that something special…
I have often been asked how I felt in the minutes after I left the consultant’s room. I can honestly say I didn’t shout or cry or yell ‘why me?’ (an all too familiar bleat in these times of self-absorbed indulgence). I did feel however that I would have enjoyed a long lunch with Dr Nightingale- he had already told me about his love for music and his recent visit to the Montreal Jazz Festival…we could’ve chatted for hours in a bijou café by the river, with Stan Getz softly crooning ‘The Girl from Ipanema’ in the background while eating a grilled halloumi panini, with a light Greek salad, sipping a chilled sauvignon…divine thoughts…aaah the daydreaming…
And then I woke up… MS be damned!
The days that followed involved being prescribed a mega dose of steroids to slow down the inflammation that was causing havoc in my immune system. I stayed at home and took advantage of not being able to sleep for three days around the clock and read the Girl with the Dragon Tattoo trilogy. It’s odd how we can remember the small details that sit alongside such enormous life-changing events.
I met my new MS specialist nurse at Shrewsbury Hospital, who was lovely and I was offered the opportunity to join or attend a support group. I’m not very good at this sort of thing I must admit. I always try to find the funny side of any potentially tricky or awkward situation I’m facing and start giggling like a naughty toddler. I’m sure it is a coping mechanism, but irritating as it is in serious moments where levity ought to be the first requirement, my quirky desire to laugh has helped me get through many bizarre life situations. Let me make it perfectly clear I do not deride anyone who seeks what can become a lifeline, the network of support from professionals. To be able to talk, to vent, to cry or whatever it takes to get through life’s brick bats and traumas is a crucial resource. I do it all the time, but my preferred route is through friends or family and I consider myself extremely fortunate to have the support network that affords me that indulgence of the occasional rant or ‘woe is me’ to whinge and wail at will.
I did shed a few tears in frustration and despair when a very kind woman called at my house to deliver a leaflet for the Shrewsbury branch of the MS Trust. I could never imagine a time when I would have embraced making gift boxes with unfettered joy or on another evening struggling through a fitness regime with a well-meaning instructor attempting to coax me to lift my leaden legs and to swirl them round in a clock-wise rotation…seriously. Perish the thought.
My table top and tree dancing days came to an abrupt halt in 2009. I do occasionally manage a few twiglet manoeuvres; this involves remaining firmly seated and swirling my arms aloft for as long as I can sustain my aching limbs adopting an uncomfortable and decidedly awol position entirely of their own.
The ‘introduction to MS’ group I did attend in the first few weeks after diagnosis was crushingly depressing and I quickly reached a decision that any similar support group was not for me. The woman leading the session I felt was patronising and needlessly pitying in her tone. At one point I felt the dreaded rise of a giggling fit bubbling up when she asked the chap at the front if she could borrow his stick to point out something on her ‘helpful hints to manage your symptoms’ board that she couldn’t quite reach…it was a scene straight out of Little Britain if you can remember the Andy & Lou sketches played with such comical insight by David Walliams and Matt Lucas.
There is no getting away from the stark reality of a life limiting disease – and MS truly does ‘steal life’ as one commentator aptly observed. I retired on ill health grounds from my role as director of the Hive in 2015. I struggled for 6 years to keep going, a form of denial in the first couple of years I suspect: refusing to accept that this sort of illness was going to stop me. I had truly underestimated how tough it is to maintain the level of work I had been so used to managing – pre MS. My colleagues were nothing short of amazing, supporting me while on quite a few occasions I couldn’t make words or sentences make sense; an irksome issue for one who has spent their life writing and talking and in the case of my last professional role, a critical feature of that job required analytical competence, the ability to write speedily and respond quickly. For the past 5 or 6 years I have not been able to walk more than 50 yards in one go (and certainly not without a walking aid). The concept of travelling prompts a fear in me now – such is my snail pace, compromised balance and the general posture of an ironing board – hence my reluctance to move far from home, I want to stay where I feel safe. It is easy to see how people with disabilities rarely venture far from their home. It can become all-consuming the sense of isolation and the loss of a once active and engaged life.
In many ways I have managed to reinvent myself, that isn’t to say there are days where I don’t feel incredibly bleak, if I let my mind wander dangerously into that ‘once in my life I could…’ but I consider myself fortunate; my friends and family are close, moving to a bungalow 5 years ago allowed my day to become more comfortable and manageable and I am undemanding in what I like to do, so I listen to hours and hours of radio 4, and enjoy the simple pleasure of Popmaster on Radio 2 in the morning. I have a lovely garden, two little dogs, a quiet office to tap away at a computer and grateful that I still have the use of my hands and that my eyes are still able to see and focus on the finer things of life. I have resisted the slippery slope of drifting into daytime TV as a permanent fix for immobility. There’s only so much Homes Under the Hammer a person can deal with before reaching for a blunt instrument to administer self-inflicted wounds…
I still resist the drugs – almost 10 years on from diagnosis – I stubbornly reject any MS medication, how long that can continue is debatable, but I have an inherent fear and loathing for ‘symptom management’ drugs – partly because I’m not convinced they offer any real respite without having an effect somewhere else and causing unwanted side damage to other parts of the body. My mother rattled with pills during the last few years of her life and whilst the medics might argue that these enabled her to live until the age of 78, I would counter that her quality of life was severely impaired by the cocktail of drugs she was pumping into her body on a daily basis.
Of course, we can never say never to future treatments and the unpredictability of the disease dictates that I can’t rule out further intervention. In the meantime, however, I will continue with the vitamins, the manuka honey and the largest dose of optimism I can buy. After all playtime and pinot…liquorice and laughter and to quote the great Mohammed Ali: ‘it isn’t the mountains ahead to climb that wear you out; it’s the pebble in your shoe’ just about sums it up….