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Unexpected Gifts

A road map of moments which defined my journey with MS by Alison Potts.

I am not the way I used to be.  MS has changed me. Of that, there is no doubt.

For that, I am thankful and somewhat in awe.  The personal story I am telling here is not one about putting a positive spin on something or making the best of what is going on.  It’s about piecing together what might have seemed insignificant or even unwelcome comments, ideas and circumstances and finding a whole new experience than the one to which I might so easily have been limited.

Almost of all of those things that have most helped me, most sustained me, most encouraged me and set me on the best path with my MS happened in moments.  I could have overlooked them, yet something about them called a part of my attention. I believe that part is the part of me which looks out for me and my healing and thriving.  As I have gone through life and observed and recorded and researched, I find that this part seems to exist in all humans and that when it draws us into a moment – of conversation, for instance, or intuition – we are right to notice and to follow.

I have had several watershed moments on my journey with MS, one that began 25 years ago when as a young woman I was finally diagnosed after experiencing years of symptoms.

These moments have become landmarks on a map charting my life through increasingly generous and life affirming spaces, inside of me and out.

Each of them has been a launch-pad for some part of me that knows how to adapt, be creative and find new opportunity.  This is a part of me that sorely needed help as when I was younger, I had a tendency to be rigid, especially towards myself.

I have even given them labels, each of these defining moments, such is the potency of what they instilled in me. Without MS, I may not have met these moments in the same way – I may not have used them to update the way I was responding to myself and to life. I may not have had such motivation to follow up their call in me to create new ways of being, and take up the invitation of significant turning points they initiated in my wellness journey.

I remember who I was before MS and I reflect on who I have been with MS and though I honour exactly where I was on my path at every stage, I thank myself daily that I have been able to expand beyond each “story” arising, rather than limiting myself to the moment of crisis which presented it.

I have kept all these moments the way I used, as a child, to keep my cherished collection of shells, gathered from seaside holidays, in a box that I that I kept on a bedroom shelf and opened during those moments when land-locked and homesick-for-the-ocean, I wanted to feel again the freedom of that sea-scape alive in my body. Those shells were little pieces of magic and now that I live in Australia near some of the most beautiful beaches in the world, I can see how the moments we keep alive in us can create our future happiness.

Those defining moments in my MS journey that I deeply remember, became part of a collection of wisdom and nourishment that has lived on inside me and been the anchors and guides that have 

Feet on a beach

 

No 1:  The Diagnosis Moment

One of the most profound memories of my life is of sitting in the office of a neurologist at The Manchester Royal Infirmary in the UK, hearing that I had MS, and not being afraid.  I had, in that moment, what you might call a spiritual epiphany and it came as pure feeling the way something you “just know” comes with no words, no argument, no need for evidence.  I felt tranquil, serene and deeply safe. The feeling was wordless but it spoke to an “I’ve got this” statement and an “I am looked after. I felt something bigger and stronger than the moment itself, move powerfully inside me and show me it was there. I felt relieved. I also seemed to hear a voice that already knew my future saying, “Alison, this is your path. There is opportunity in this.”  I walked back to the station to go home with my eyes so blurry from the eye drops I could not read any of the road signs, and yet within me I felt in touch with something I could not see, but could deeply trust. I saw the truth that was not yet visible. Twenty-five years later, I am a business owner, living my passion sharing work that has evolved as a direct and inseparable part of my having MS.

alison

2. The We-Cannot-Help-You-Moment

I remember at the next meeting with my neurologist, waiting to hear the action points going forward and being told, essentially, there were none.  There was no treatment, no cure and no understanding still – despite plenteous research – on what my illness was. There was no Google to connect and inform me. “Enjoy your health while you have it” said the consultant, “And come back when you notice a new symptom.”  If there was ever an invitation to do-your-own thing, I haven’t experienced a more generous one! I found that parts of me that perhaps had not felt so encouraged before – my independence, my rebellious nature, my idealism, my free-spiritedness, my ability to think-outside-the-box, my stubbornness and my ardent protection of my own free-thinking rose up determinedly to take the test. I began to love those parts of me that were once unsure of how they could operate in the world with abundant its rules, protocols and systems. Now there were no rules or systems to be governed, it was completely up to me.  Scary but also comforting at the same time. Learning to work closely with myself, my own nature and needs -has been the best path I could have chosen and one I remain on to this date.

walking away

 

3.  The Moment I Was Given One Special Book

Within days of my being diagnosed, my mother sent me Judy Graham’s book “Multiple Sclerosis: the Self-Help Guide To Managing MS Naturally.” As I was at the time, Judy was a BBC producer – and someone who had managed her MS naturally for years, had a child, maintained a career and been an excellent advocate for robust research into the efficacy of natural approaches to treating MS, with a strong emphasis on diet.  Her book was the only source of information I used. I owe her so much.

4. The Moment My Mother Told Me About Her Friend

One of the things my clients with MS and other medical conditions find most hard to manage is the amount of information flow and advice we are bombarded with daily, courtesy of the digital age. Of course, some of it is also a source of valuable support, but when your nervous system is already fatigued and overwhelmed, it can be an impossible task to sort what is individually appropriate to yourself from all the general chatter.  Everyone has an opinion. Everyone has an answer, it seems. There is only one of each of us and not all answers and opinions match our needs, lifestyles and unique nature, even if we share a general realm of symptoms. Instead of the internet, I had My Mother’s Friend.  My mother’s friend had lived with MS all her life and now, in her sixties, graciously offered her key advice. 

It came in three sentences:

  • Never let yourself get too tired.
  • Never let yourself get too hungry.
  • Never let yourself get too stressed.

Alison drinking from a mug

While not taking MS and its issues away, these three tenants nevertheless served as beacons for me as I continued to work, commute and live my life. Those things may seem small, but when dealing with such a sensitive and reactive nervous system as governed by MS, they can make a startling difference.

5.  The Moment I Told My Friend Stef

For many years, I told very few people I had MS. I was especially worried about telling people at work as in the ruthless and competitive world of media, it is hard enough to compete for contracts.  I did not want anyone to assume that because I had MS, I would not be able to deliver. This, as you can imagine, added extra stress to working life. 

In the beginning especially, I was dealing with a lot of new symptoms such as visual disturbances or challenges to balance, and I had to continue to be present in meetings and produce work, without letting on what was happening.

Deciding to let my amazing friend and former-colleague Stef know about my MS was the best decision.  She was such a support to me over the many years we worked in the same office, simply by being there, checking in on me and providing reassurance that someone was there for me.

My work was always praised, but my struggles were real. One of the things found hardest to manage was that quick fade, that sudden and total energy drain that gives no warning and takes no prisoners – we hit the wall that fast.  You can’t soldier on because there is no “on.” It becomes imperative to find a battery-recharge station.

Stef managed to source a rarely-used conference room where I could take a power nap when this came up and would keep a watchful eye for anyone who might want to use it, so she could come in and gently give me a head’s up.

It was our little secret and it removed a whole level of anxiety for me.

6. The Moment I Heard These Words

In a previous blog for OMS I wrote about the day I turned up for therapy and my therapist, as he always did, asked me how I was. “This time, I replied not only with my voice and words but from the utter despair of my whole being. I said, “I’m tired.” And he looked at me, he held my gaze with the steadiest conviction, and said: “You are tired. And you are you.”

What is the most important thing in your life? Something you never want to lose? Something you cannot truly live without? The most important, the most valuable and the most 'cherishable' thing in your life is You.

That is the reason you are here. And your one single job is to be yourself. That is all. Sometimes words can shift things. Words have life and they give life. I had heard so many words – gosh, how many words does a single person hear in a day alone, let alone a lifetime?  But these ones, I took inside me, and they began to live there. 

Previously, every time I referenced myself I referenced myself as a person, not with fatigue, but called Fatigue. And in doing so, as we always do when we box and label the parts of things, I abandoned all the things that remained true whether I was flat on my bed or up all night with the owls.

I am me. And once I remembered that, I found her. I found her beyond the things I achieved, beyond the things I thought, beyond the things I did and didn’t do. Life with MS changes things. We find we may need to stop relating to ourselves as someone who has unlimited time and energy.

 

7. The Moment I Brought New Life Into The World

Izzy

Sometimes we experiences small shifts in our awareness and sometimes giant leaps. The birth of my daughter Isabella Grace created a brand new world inside me. After a decade of experiencing my body more in its challenges, I suddenly got the biggest evidence of how miraculous my body really is.  It brought life into the world, and more than that, the greatest joy imaginable. I was overjoyed when I found I was pregnant and ecstatic when Izzy was born. My memories of her babyhood are memories of a depth of love and joy and meaning I had never known was possible. I was so thankful for her and this happiness that things that had seemed a worry or a struggle before, just seemed to fade into insignificance.  Her birth also brought me in touch with my connection to creativity and rebirthed the writer in me, which had taken a backseat to managing my life with MS. 
 

8. The “No One Understands!” Moment

I was invited to meet the new MS nurse at the hospital I attended in London. I didn’t really think I needed to go, but my neurologist was keen she met people. I needed to get to work afterwards so I was in my work clothes with full makeup. In the waiting room, I picked up a leaflet about fatigue and as I was reading, I felt a deep feeling of despair well up inside me like a heavy shadow. This was a depth of despair one that must have been building in me for years, through every moment of frustration, of loss, of struggle. When I was called into the nurse’s room, and she asked me how she could help, I burst into tears and found words pouring from me that I had not even known were there. Words about all I had wanted to achieve by now, but hadn’t.  Words about all the things I had lost. Finally I said “AND NO ONE UNDERSTANDS!” I hadn’t realised before how much I struggled with the invisible part of having an invisible illness. It was a watershed moment where it suddenly came to my attention that as a communicator and a person with MS, I was in a position to be a voice that could represent all people with invisible illnesses and in some small way, help more people to understand.  I went home and wrote this article for BBC Online. They published it, I sent it to every contact I had, and overnight I went from having only a few friends who were aware of my situation to there being no on in my life who didn’t know. At a local level, it birthed a new courage in me and brought so much affirmation and support into my life from so many sources. At a global level it generated widespread coverage  and I received multitudes of messages from grateful readers – those with MS and those who were caring for or in a relationship with people with MS.

Much of my journalism since has been dedicated to sharing awareness relating to physical and mental wellbeing.

8. The Moment Yoga Found Me

alison doing yoga        Alison teaching

There is an expression in modern yoga – “We don’t find yoga. Yoga finds us.”  That is exactly what happened to me. I cannot tell you what impulse first guided me to my first teacher Penny’s beautiful class in a small sunny room in South London, but from the moment I stepped on the mat, it was love.  

Yoga is not simply exercise – it is a tool for remembering and connecting with the magic of the breath in our bodies and with not simply physical movement, but all the movements of our lives.  When I first began classes, my muscle tone was poor and yet it was a relief just to be there on my mat feeling my body, just as it was. There is something very powerful in that, especially if our relationship with our bodies needs healing. As I connected to the practice over time, I grew stronger in ways I did not know I could. Yoga taught me there is always possibility of  developing more connection, more strength, more opening, more balance. In developed so much love for this heart-centred practice that I invested in teacher training and qualified as a yoga teacher in 2012.

9. The Moment I Decided To Live in Australia

alison on the beach

It really was a single moment. One moment I had been expecting to live in England, where we had a mortgage, jobs and a school, forever. The next I was asking my husband if he could look at job opportunities in Australia. Ever since an earlier visit to Queensland, I had felt a pull to be there, in a place where the sun produced generous, daily supplies of Vitamin D – where when it was too hot I could cool down in the pool and the ocean – where the land was spacious, the lifestyle easier and no one seemed in a hurry. I could also see what a gift it would be to my daughter to have the kind of life conducive to a care-free and healthy childhood that I believe Australian life offers. We moved ten years ago and it is here I trained in yoga and meditation and developed my own wellbeing and self-care platform and business.  

It was all meant-to-be and every watershed moment that appeared along the way, contributed to the path that brought me here because what each of  those moments served to do, was to open me up to more growth, more learning, more understanding and more connection to my intuition.

For every moment, I am grateful, and I feel them living inside me with every new road I meet on my journey.

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Tracey Gordon (not verified)

Such a beautiful and honest MS story. I work for the BBC and I’m writing an article which I’ll send to BBC Online about my MS. I am having a major relapse at the moment and on steroids at the moment. I have so much energy and they have lifted my brain fog and my words come pouring out. Your words have inspired me. Thank you! 😍