"When my dream life changed when I was diagnosed with multiple sclerosis, it took some time for me to realise that I was not the disease: I was still me. "
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I was around thirteen years old when I became aware of Ireland. The shocking news reports from Northern Ireland contrasted with the picture books of stunning images of the Irish landscape – never before had I seen such disparity.
I was hooked. I knew then that one day Ireland would become my home.
When I eventually moved there, life was like a dream. For two years, I spent most weekends and holidays travelling around the island of Ireland, seeing what I had seen in books and on TV with my own eyes.
I went to rugby matches, took up the odd behaviour of hugging telephone poles I mistook for trees and chased imaginary sheep and cattle in the middle of nowhere. I spent my life with my nose in books and was now following literary trails in the footsteps of James Joyce and William Butler Yeats.
I was living my bucket list every single day.
My life was split into “Before I moved to Ireland” and “After I moved to Ireland”.
Everything changed
Just then, MS showed up.
It did not come as silently as it comes to others. It crashed into me like a lightning bolt in a storm.
It brought with it trigeminal neuralgia, which would make me yelp mid-sentence due to the stabbing pain it caused in my left ear, eye and surrounding areas.
That was just the beginning. New symptoms – just as sticky and unwilling to leave – kept coming.
Now, my life was split into new categories: “Before MS” and “With MS”. It felt as if I had jinxed myself somehow by emigrating and living my best life.
Gone was the happy-go-lucky girl who never said no to adventure and experience whenever, wherever.
Gone were the cinema weekends of binge-watching three films a day.
Gone was the Incident Lifecycle Coordinator who could juggle many jobs at once.
Slowly, I saw myself change into someone who wasn’t me.
It took me a decade of dreaming before I moved to Ireland. I was held back by my fear that something bad might happen. Had I taken on too much by working, travelling and studying at the same time? Had Ireland turned against me?
I found myself in an existential crisis.
I started falling asleep in the cinema. I cancelled summer trips because it was too warm. I couldn’t eat or write without feeling tremors in my hands.
Finally I noticed that friends began organising activities without me.
The changes were visible
In the year following my diagnosis, I would often frantically run to the mirror to inspect my face. My consultant told me while I was in hospital that I had markedly visible facial changes and that that, together with my MRI results, indicated a high probability of MS.
I had reached my lowest point. I yelled, cursed, and felt like dying for a second, hoping to feel normal again when I was brought back to life.
I had already been through the wars: two surgeries in nine months. I wanted my old body back. I felt tainted, and just not good enough anymore. Everything in my life had changed.
Looking in the mirror, I wondered when – or if – the old me would ever return.
I am a perfectionist and always carry a certain amount of fear of rejection. MS tripled that fear whenever I had to tell people my newly gained tagline: “Handle with care, just diagnosed with MS”.
Not only did I fear rejection from others; I feared rejection by myself. If I ever wanted to live life to the fullest again, I would have to begin with nurturing and being kind to myself. Each day, I had to refill myself with affirmations, telling myself: “I am still me, the core of who and what I am is still the same”.
Getting on with life
My dream took me to Ireland, and fourteen years post-diagnosis, I am still here. Life has changed. The last time I was able to go hill walking or rock climbing was before my diagnosis. I had to stop binge-watching films the year after. I exchanged those activities with catching up with friends over coffee or writing and studying whenever my symptoms allow.
Through the process I have learned it is OK not to be OK and that I would be OK, no matter what.
Like one of my favourite André Camus quote says: “In the depth of winter, I finally learned that within me lay an invincible summer”.
NPS-IE-NP-00200 February 2021