How I learnt to define and navigate my multiple sclerosis mindset

In for four, hold for four, out for four, hold for four - and repeat.  

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It’s New Year’s Eve, and I’m looking around the Eye Casualty waiting room, everything doubled,  overlapping, every object casting a shadow of itself. A repeating image that reflected the same way I was  feeling in that moment - a shadow of myself. All I could think about was meditating. Something that, in  that moment, might spare my mind from falling deeper into the Optic Neuritis despair. At this point, it’s  one of many tools at my disposal. One of many coping mechanisms that, combined, contribute to something like a wheelhouse of resilience, that accumulate to a mindset. 

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The most commonly asked question I get is “what’s the best / worst advice any one has ever given you?”.  I really struggle to answer this because I don’t remember the worst advice, although I’m sure I’ve received  plenty over the years, or perhaps better put, I choose not to remember it. It’s not something I typically  reserve storage space for. As for ‘the best’, it has often come unusual sources and for the most part has  not been directly related to MS at all. The pattern I have found, however, is that this often exceptional  advice typically related to a someone else’s personal challenge, lifetime struggle, or their physical  endeavour. Something requiring resilience. A mindset. 

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My diagnosis story

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In January 2013 I was diagnosed with Relapsing Remitting Multiple Sclerosis, and it is my mindset that  has carried through my darkest moments, including multiple relapses, and helped me reach my highest  highs. At the time, I didn’t know anyone who had MS, nor had I ever heard of it, so in my naivety, and with my young ambitious 22-year-old mind, I just decided rather than to listen to the advice I was receiving, which was often laboured by fear and despair, that this challenge would in fact become an opportunity. I  didn’t understand what was happening to me beyond the fact that I was being presented with a challenge,  and I wanted to prove myself up to the task. Whatever that meant. 

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I was numb down my left side for weeks after the diagnosis, and little did I know this was the first relapse of many. I would go on to lay in darkness while my eyes adjusted to sharp pains and blurry patches. I would somehow need to navigate myself through the indescribable adrenaline and anxiety of multiple 5 day high steroid treatments. As much as I had doctors and family and friends and partners advising me what was best, only I truly knew what was going on inside my body and inside my head. And the latter wasn’t ever easy. 

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I tried connecting with others in the MS community at the time and, to be honest, I found it all incredibly  overwhelming. It was a very different time, even just 10 years ago, and even though I’d earned my way in to this ‘club’ by default, I still didn’t feel like I fit in. It was so challenging to navigate my way through connecting with others with MS being the introvert that I am, so I turned inwards.  

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Around that same time I became infatuated with the ‘athlete mindset’, a form of mental preparedness that some of the world’s greatest sporting stars often refer to in moments of great adversity. The word ‘resilience’ was always referenced, and the combination of not only physical strength but the power of the mind. I listened to Arnold Swarzennegger talk about sculpting body parts like they are a lump of clay; I  listened to Ronda Rousey talk about her determination for come back after come back; I listened to Ali talk about perseverance and the stillness of the mind. I read books by Brene Brown, Rohnda Byrne, James Fray (yes really, I even empathised with addicts and the motions of rehab, relapses and remission). I built a popular psychology book collection worthy of a local library. Finally, I had found my people, my  ‘advisors’ as such. They lived in the pages of the books I read, in the scripts of the movies I watched or there in plain sight in the quotes I plastered on my walls from the podcasts I’d listened to. All of them, masters of the mind. 

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Making meditation my thing

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One summer I attended a ‘self help’ festival centring around wellness and the mind body connection. I was keenly sat on one of the long benches in the Book Club tent listening to a talk by The Breath Guy on the importance of breathing and awareness around your breath. Totally consumed, I decided this was the  next thing I needed to sign up to. It didn’t require human interaction and meant I could once again turn inwards and rely solely on myself. A strength I felt I already possessed. I approached him afterwards and  he explained that his father also had MS, and was doing quite well. He had been on medication and since  taking up breath work and meditation, he was able to come off his medication. (Now that’s a detail I clung  on to and took little too literally which is a story for another time) His parting words were a simple  invitation, but an open door nonetheless: “You should try meditation”. Something I’d already heard described as ‘a benchpress for the mind’.  

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I’d never explored meditation before, but I could recall a yoga class I had attended with my mum once  where the instructor had told me to ‘smile to the right side of my brain’. The idea had us both in fits of  laughter at the time, but after a bit of athlete mindset application, I’d grown to love training and the discipline required to strengthen my body when it was such a challenge in the grip of relapse, and the persistent practice had required lots of right-side-brain-smiling. The idea of failing and going again,  practicing softness and self compassion, and focussing solely on the movements in each moment were  somewhat meditative. Solitary, focussed, present. The beginnings of a mindset. 

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Conscious breathwork, combined with an inner dialogue of Will Smith’s voice repeating Confucius (“He who says he can, and he who says he can’t, are both usually right”) have carried me through many a tough moment. After 10 years of relapses and periods of remission, this tool has contributed to my self confidence in being to connect with others within the MS community, in person. 

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The beauty of a multiple sclerosis mindset

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Now, I’m not saying this is going to rid you of your MS (that would be bad advice), but what I will say from  experience is that practicing meditation, learning to sit with myself and my breath for just a moment most  days, has built up a muscle of resilience within that allows me to reach for stillness and peace in moments of chaos and distress. Like right now, sitting in a hospital Eye Causal waiting room on New Year’s Eve, not  knowing whether I’m ever going to see straight again.  

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The next time you have a moment to yourself, or you find yourself in a tough situation, lost in your mind,  just remember:  

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In for four, hold for four, out for four, hold for four - and repeat.