I am soon to acknowledge 18 years of living with the diagnosis of secondary progressive multiple sclerosis (SPMS). That is over half of my adult life.
I used to say MS changed everything. When I look at it, however, I’m not so sure of that. It may have done, but everything was going to change anyway. I’ll never give MS credit for any good that has come with the disease. But there is plenty of good in life in spite of it. In fact, I am quite happy with the way that my life is turning out.
Through the closing window…
Surely, if MS hadn’t closed so many opportunity windows in rapid succession, and threatened to shutter even more, I wouldn’t have crawled through the one which lead me to the desk where I’m writing now.
That desk is in front of a westerly facing window which looks out onto my front garden, to the stone walls and hedgerows outside our gate, and to the misty, western hills of County Kerry, Ireland.
…to life in rural Ireland
Living with MS in rural Ireland is not easy. There are financial burdens many of us with MS will know too well. We live an hour away from the nearest neurologist’s practice. There are no MS specialising centers in the country. The list of burdensome aspects of living here with MS is long, but it’s the opposing side of life’s ledger upon which I have learned to focus.
My wife and I chose to move to this part of the world from America over six years ago in order to, as we say, ‘live the dream while I can’. Living with MS has a way of scraping away the glossy bits of our plans and dreams, leaving us to examine what remains – the real joys in life. That’s why we shifted nine time zones to settle here.
It’s all about the living part
Where we live doesn’t make my MS any better. My symptoms continue, my disability advances, and my abilities falter as my disease progresses. But life is still good – perhaps even better – because we focus on the living part of living with multiple sclerosis. And it just seems a bit easier to do that here and now than it was there and then.
I don’t define my life as multiple sclerosis, but I’d be lying to myself and to others if I didn’t acknowledge that it has become a significant part of my living that life.
Celebrating this weekend
At the weekend, landmarks across the globe will bathe themselves in shamrock green. People around the world will celebrate the Welch-born, Roman Britain made patron saint of the Emerald Isle.
I, however, will look out that writing window and see the birds I feed on one of those stone walls.
If my legs allow, I’ll make my way down to the local and watch a traditional GAA football match. I’ll likely have a pint or two as well. But most importantly, I’ll get up and get on with living my life – MS in tow – because that’s the only way I know how anymore.
Wishing you and your family the best of health.
Trevis’ Award-Winning books, Chef Interrupted, and Dingle Dinners are in the shops now. Follow him on the Life With MS Facebook page, on Twitter and don’t forget to check out his website TrevisLGleason.com