The words that changed my struggle with MS

I was diagnosed with MS in December 1995. I remember it vividly because it was a few days before Christmas. I was living in the North of England and there was snow on the ground.

The counter energy of disruption

I got my diagnosis on the same day we got our Christmas tree for that year. There was that visceral feeling of sweet anticipation you get at that time of year, especially when you were young, as I was.

I was in my twenties when anticipation is the main energy you live with; anticipation of discovery, of life unfolding, of everything ahead as clean as the blanket of virgin snow.

That’s a magical feeling. That’s when it really started to show its face, the counter-energy of disruption. The ground before me, which I’d thought of as clean and unspoiled, was already imprinted with random footprints and the griminess which usually only develops towards the end of things.

A major upheaval

MS is an illness which can stop you up short in the very middle of things, or indeed, before something has really begun. I was never someone who didn’t finish what they started.

I was never someone who gave up because it was hard. Growing up, I had often been called ‘infatiguable.’ Everything I dreamed, everything I’d planned and everything I’d worked for had been created upon the architecture of that being.

Everyone at that age wonders, to a degree, who they are and what they will become. This is an illness that can make you wonder if you will ever be yourself again and what a future – as the you that you have become – could possibly look like.

A strong and resourceful person, as the years unfolded, I found I could manage every symptom except for the one that runs as a theme through the lives of everyone with this and similar illnesses.

The bugbear that is chronic fatigue

Chronic fatigue. If you could roll exhaustion, frustration, loss of memory, concentration and ability to speak, collapse, disappointment, betrayal, despair and bereavement into one big ball, that is what chronic fatigue would look like. People with chronic fatigue become expert managers and jugglers.

I salute anyone dealing with this. You are super-human in what you achieve. People complain about life being busy with so many competing schedules and so many balls in the air; well you add that ball into the mix and see what you’ve got

. We are miraculous in what we achieve and in how far we are able to reach into ourselves to keep momentum in ours and others live against such fierce headwinds. On the outside I didn’t seem to lose much. I kept working, which was the most important thing to me, and I had great relationships. But what hung in the balance was the most significant thing in my life – my sense of “me”.

When we get to know ourselves, or think we do, we also start to define ourselves, maybe even only covertly, on the inside. My definitions had been around that architecture of strength, tirelessness, an endlessly bright and awake mind, and an ability to overcome.

A brilliant therapist

It became harder and harder to find myself without the guidance of those previous pathways I had made to map myself. Lost, I found a guide, in the form of a brilliant therapist. A brilliant therapist is one who listens.

A brilliant therapist is one who sees. A brilliant therapist is one, who in doing those things, illuminates what may have become obscured.

One day, I showed up for my appointment. As always, he 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. 

Just being me

And as they did, something in me woke up, like Sleeping Beauty kissed by a prince who knew she could, and the You that is Me was given permission to thrive. “You are tired, and you are you.” Not even but. And. “It’s Wednesday and you are you.” “It’s raining and you are you.” “There’s milk in the fridge and you are you.”

“There are seven billion people on the planet and you are you.” The mistake I had made – for which I forgive myself because when life changes so completely it can feel like an earthquake – the dust settles differently and we are never the same – was losing sight of my unshakable foundation.

My home. That architecture I had built my sense of self on was more of the flat pack furniture type – looks lovely and does the job but isn’t the same as something bespoke and lovingly handcrafted by an artisan cabinet-maker.

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. You may need to stop relating to yourself as someone who has unlimited time and energy.

Embrace the imperfections