Thursday June 15 2017 11:00 AM
This week in a blog about MS and Hope, Emma Rogan explores her understanding of the word ‘hope’ when it comes to living with MS.
“I hope so”. “Hopefully.” “I hope you’re feeling better soon”. I don’t like the word ‘hope’ as it has come to be used. It’s non-committal, unrepentantly bland and the perfect word to avoid dealing with an issue. I don’t think the condition ‘MS’ and the word ‘hope’ go together. Let me explain….
Being diagnosed with MS lead me down a path of research, adventure, heartache and self-discovery. From the first week when I walked my numb/pins and needled legs to Mullingar library to search for words about MS, HOPE, as I understood it, was far from my mind. I needed words of substance- the science, the experiences and strength of others, a reality to latch onto that would save me from the Overwhelm. I craved information on this mysterious disease for which there was no known cause, no cure and according to some health care professionals, nothing I could do about. Other people did what they thought was helpful, regaling me with stories of a magical juice that “cured Mary from *Roscommon in a few months for just 399.00 per month!” or the healer that “Swear to god, John was cured straight away. Shur (sic.) look at him!”. Their hope was grounded in magical thinking and the last thing I needed was magical thinking.
During my time in Westmeath I became close friends with a GAA dual play (football and hurling) Mickey Fagan. He had been diagnosed with MS early on in his sporting career. Mickey reinforced my distaste for the word ‘hope’; he was also of the mind that hope was a vague word that gave people an easy-to-access exit away from reality. I stopped using the word hope and all its derivatives in my every day speech.
MS was a thief that came in the night to steal, to pillage my sense of self and leave a disgusting smear on my life. In the early stages, I became anchored to certain beliefs of what it meant to have and live with MS. It was a dark, lonely space of distorted thinking. Those first few days, post-diagnosis, are remembered as a dizzy new reality. Those early weeks of learning a new language of myelin sheath, axons, oligodendrocytes and the months of insanity that lead on. Then, as I began to reconcile myself to living with a chronic illness, I started on a path of self-discovery and personal recovery.
In the early days after diagnosis, I thought it was living with MS that robbed me of my future and made me insecure about my life. But it was the denial of the other 99% of what makes me, ME, that distorted my perception. I was looking the wrong way through wonky glasses. Thanks to curiosity and the years of reading, researching, learning, educating myself and building a personal system for living, my perspective has changed.
I cannot change my diagnosis nor can I alter the days that have been lived. I wasn’t ever promised a life of ease. However, every day I get to make choices. I choose to go to bed early so my energy is topped up for the next day. I choose my way to work and when fatigue hits, I choose to listen to my body and rest. I choose kindness and to look for good things. I choose my behaviour in my relationships with others and myself. I choose my nourishment (body and soul), I choose my treatment, I choose a therapist to help me deal with my personal issues. I am kinder to others and to myself. I can now look at those early days stumbling around, I didn’t think I had any choices. Now, making choices restores my belief in myself and I can allow a way of life that brings me to what I thought impossible, a sense of peace. Dare I say that today I’m reconciled with ‘hope’ and open myself up to creative possibilities as I gain peace of mind and a life well-lived. I might even start including the word hope in my sentences again.