The idea of writing of a book solely about my experiences in Ireland gradually changed into a book about Ireland and MS, but the physical writing took a bit of a step backwards. There is a huge ambition to finish it, but after two busy months, I have an over-abundance of low energy levels. Writing so, is currently on a holiday, although I do expect my fingers will be dripping ink soon enough.
It’s funny how life can take so many unexpected twists and turns. It’s even funnier when you realise that time really does move on, how it shows its kindness on relationships of any nature. Ireland, being a matriarchal country, is absolute proof of this. Having the right people in your life cannot be stressed enough, and especially so if you live with a chronic, degenerative illness. If Ireland taught me anything in the last 12.5 years, it’s that people, no matter who they are, can be your rock in whichever situation you find yourself in.
Like all cowards, the illness I write about lurks in the dark within my central nervous system, and sometimes rises to the surface in somewhat unflattering ways. My body does a good job in concealing it for now, but every so often I worry about it rushing to the surface and staying there… permanently.
Just a few days ago, I wanted to get my grocery shopping out of the way as quickly as possible. Totally out of the blue, however, a very loud bang sounded in my local shopping centre. In a matter of nanoseconds, I yelped, grabbed the left side of my face and thought, ‘Oh no, not again!’
Trigeminal neuralgia literally slapped me in the face once more. Intense facial pain is one of those MS symptoms that is still unknown to many, and very misunderstood also. Your face feels like it is being hammered by a surface drilling power tool, on and off. Since that day, it’s been difficult trying to get rid of the returning stabs of pain, and once again I’m in hiding.
Not surprisingly so, it blackens moods when it arrives, and brightens faces when it leaves. It feels like being chained to a constant shapeshifting entity that understands no reason aside of its own. My body should show who I am, not who I’m not. Not yelping after hearing loud, sudden noises, strong lights, brushing teeth and speaking.
There is no single theory that gives us an inkling why we live with that unequal and accidental guest. We have no Albert Einstein or Stephen Hawking to concoct more lasting theories. The laws of nature are few, and they are even fewer in the world of MS. So, yes, life with MS is complexity in all its forms, and finding the theory of why MS even exists will someday be an enormous achievement.
Nonetheless, I find near-beauty in its complexity, honour in its demise- if and when it comes, and inspiration in our most difficult days. The “Why me?” theory may be incomplete for now, but the friendships, relationships, experiences and love I found because of it, will last. And that’s how I feel about MS Ireland also. The society and everyone I met through them feels like my extended family, and a family away from home.
Last year, I met a group of fellow writers through the society. In my mind, we were almost 100% alike and we all wanted the same thing: raise awareness and show the daily struggles of life with MS. A small group, but one with large and bright outlooks on life. Since then, I feel my life has taken off in a way I never imagined.
And the book I am writing? Yes, they will feature also.
If or when you need MS Ireland's help, do reach out on 1850 233 233, via email on info@ms-society.ie, Facebook, Twitter as together, we really are stronger than MS.
For Ava, Diana, Olga, Karen, Joan, Lucina, Trevis, Declan, Aoife, Niamh, Helen, Emma and the many others that have crossed my path the last 1.5 years.
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