New kit gave me a real insight into living with MS
During MS AwarenessWeek, which runs until Sunday, charity the MS Society is shining a spotlight on the reality of life with the condition. To that end, MS Society Scotland threw down the gauntlet to specialist features writer Niki Tennant by asking her to trial a kit – created by a woman who’s supported by the charity – that would let her experience what it’s like living with MS.
For mum-of-two Amy Newton, it simply wasn’t enough to attempt to describe to her family what it’s like to live with lifelong incurable neurological condition, multiple sclerosis (MS).
Words alone couldn’t do justice when explaining her round-the-clock challenges to medical students who will become the doctors of tomorrow, and to whom people like Amy will turn for some blessed relief from their symptoms.
Although, as Amy explained, everyone’s MS is peculiar to them, she experiences the most typical symptoms, which include problems with vision, limb movement, sensation and balance.
She’s also had to teach herself to tolerate the constant pain, which easily surpasses that of childbirth – by a long shot.
Her children, Chrissy and Ruaridh, were aged only eight and six when, 12 years ago, she was diagnosed with MS after experiencing numbness in one side of her face, extreme tiredness and an inexplicable, uncharacteristic tendency to become highly emotional and
NIKI TENNANT
dissolve into tears. Fearing how her visual impairment might progress, she asked husband Peter, whom she describes as “an exceptional carer,” to paint their home in bright hues and plant flowers in the garden for fear she’d lose the ability to see colours.
When the left side of her face drooped like it had melted, it terrified her kids, making her son wail and run to his room.
She had to find a way of explaining to her own children, and to their friends, why she was “walking funny.”
Amy needed them to understand that she wasn’t drunk. And she had to make them appreciate that there was a reason why she could no longer do many of the fun things she once did.
That’s why, after her diagnosis at the age of just 34, she set about creating a kit that would let other people, especially carers, experience what it is like to live with MS.
The kit began with Amy explaining to her children the ‘spoon theory’ – a metaphor describing the amount of physical and/or mental energy that a person has available for daily activities and tasks, and how it can become limited.
The theory was coined by writer and blogger Christine Miserandino in 2003 as a way to express to a friend over lunch how it felt to have lupus.
Giving her friend a handful of spoons, she described each of them as units of energy to be spent performing everyday actions, representing how chronic illness forced her to plan out days and actions in advance so as to not run out of energy.
The metaphor has since been used to describe a wide range of disabilities, mental health issues, forms of marginalisation, and other factors that might place an extra and often unseen burden on people living with them.
The spoon theory helped Amy’s children grasp why on some days, their mum didn’t have enough spoons left of an evening to both cook dinner and take them to the park. Something had to give.
With that came the evolution of Amy’s MS kit – a collection of rudimentary items that simulate the exhausting weight of carrying limbs that feel like they’ve been filled with concrete.
The kit was trialled by Amy’s children, their classmates, her husband and carer Peter, medical students at the University of St Andrews, and board members of charity, the MS Society.
To coincide with the current MS Awareness Week, Amy and the charity sought for the first time for it to be experienced by a journalist – and I was privileged to be invited to take up the challenge.
I met Amy and the MS Society’s press and PR officer Suz Elvey in a busy cafe in St Andrews, close to Amy’s home in the
village of Dairsie in Fife. Amy unzipped an overhead locker-sized suitcase from which she lifted a dozen wooden spoons, and patiently explained Miserandino’s theory, demonstrating how she has expended so many units of energy through everyday mundane tasks that by mid-afternoon, she’s left with no ‘spoons.’
Then, she produced the gardening gloves, the heavy training weights for both arms and legs, and the goggles. I was about to step into Amy’s shoes as someone living with MS.
She strapped the weighted bands to my wrists and ankles as she gave me instructions for the seemingly simple task she wanted me to complete: I was to read the menu, make my selection and walk to the cafe’s counter to place my own order and that of my companions, while paying with a bank card from Amy’s wallet.
That all sounded like plain sailing – until she strapped the goggles around my head, completely distorting my vision. Instantly, I had the sensation of being in a kaleidoscope, with my surroundings becoming a patchwork of scattered jigsaw pieces whose images seemed somehow detached from the surrounding sounds.
The dizziness set my heart racing as the anxiety began to build at the prospect of walking no more than 16ft to the cafe’s counter.
In the gloves with their hard rubber tips, I drummed my fingers on the table in front of me. Able to detect a hard surface, I lacked sensation and couldn’t fathom if it was glass, wood or Formica.
Then came the menu. Experimenting with holding it at a distance, then placing it hard up against the goggles, I could decipher few words, and took a stab at the chances that options would include bottled, sparkling water.
My temples were already beginning to throb. With Amy’s wallet in my hand, I was on my feet, shuffling on weighted legs in the direction of the cashier.
Disorientated, tense and lacking balance, instinctively I reached out for Suz’s hand to steady me. But Amy objected. I had to see this through, just as she does every day of her life, unaided. As customers and staff moved around the bustling coffee shop, the risk of bumping into someone or something had me clenching my teeth in concentration.
Feeling detached from my surroundings, figures passed me by in what felt like accelerated film footage.
My shoulders and neck ached from the dense weight of my arms, and the sweat prickled on my brow as I pondered just how hard and far I’d fall.
Straining through saucer-wide eyes, the counter appeared to be in my reach and I approached it with hands outstretched, fumbling for the anchor of it.
After giving the server my order, I craned towards Amy’s wallet, willing my thickened fingers to offer up a clue as to what might be a bank card within its folds.
The cashier waited patiently while I struggled with useless fingers to grip a card enough to slide it out, hover it over the machine and make my payment.
The reassuring bleep of compliance from the card reader did not come. As the woman behind the till gently explained, I’d attempted to pay for bottled water, coffees and donuts with a bus pass.
Feeling the queue of customers building behind me, sensing they were staring at me and burning with embarrassment, I struck lucky with my second attempt at selecting a card before shuffling around and beginning the long, laborious and clumsy journey back to our table.
Unscrewing the top of my water bottle proved to be my next challenge, as did pouring it with blurred vision and desensitised hands without spilling.
Then, I was back up on my weighted feet and heading for the door for my final undertaking in a snapshot in the life of a person living with MS. I was to perform the perilous act of walking, unsupported, down the street.
Feeling totally adrift, vulnerable and exposed, I navigated the pavement with feet like lead, taking baby steps for fear of snapping my ankle on an undetected kerb.
The foggy outline of chattering students and tourists seemed to be charging towards me at speed, and the prospect of encountering an obstruction – a bench, a bin, a sandwich board – had me silently counting down from 10 in an effort to control my breathing.
A tight pain was running from my neck into my shoulder through tension and stress, and the burden of weight on my arms.
Were it not for the goggles on my face, I was conscious of how others would be viewing me – unsteady, swaying, stumbling and alone, just like a woman intoxicated by drink or drugs who’d seemingly lost control.
It felt like half a day, but in reality it was only 90 minutes during which I took up the mantle of someone with MS, someone like Amy Newton – but without the severe pain the condition inflicts.
When the goggles came off and I was freed from the weights on my limbs, it was liberating. Head spinning, I had to steady myself before gaining enough composure to express my gratitude to Amy for offering me the opportunity to experience at least some semblance of life in her world.
We parted company and I made my way through the centre of St Andrews, seeing through fresh eyes the loose paving stones, the outstretched dog leads and the freestanding cordons of outdoor bars and restaurants that stand in the way of people living with MS.
The afternoon I spent in the shoes of the remarkably upbeat and stoical Amy Newton was truly humbling. It’s an experience that will stay with me for a long time.
● During MS Awareness Week, MS Society Scotland’s wellbeing hub will host a ‘What is MS?’ webinar aimed at people who don’t live with MS to help them gain a greater understanding of the condition. See www. eventbrite.co.uk/e/what-isms-tickets-488986821747. To obtain a recording of the webinar, email livingwell@ mssociety.org.uk.