As each day passes with life with MS, it’s worth noting that quite often, there is still a large information gap to be filled on a medical, emotional, societal and political level. Like many other disease groups, the MS community wants to enhance “Life with…” once a year in a bid to give more insight in what people without MS may otherwise take for granted.
In the past, I’ve written about World MS Day on my blog, as well as on the Irish MS Society’s blog and on Novartis’s MS blog. As a person living with the illness day in, day out, highlighting it has become a moral obligation.
Over the past year, however, I’ve perhaps written less than I’d personally like, but still enough to get that bit of awareness out there. I’ve become more involved in policy making on the national Irish front because people with disabilities, in general, have seen many drastic budget cuts due to our eight-year-long recession. Now that we’re slowly climbing out of those dark days, the ruins left by our past two governments need to be raised again to improve the quality of life of people with MS.
Throughout May, countries around the world have campaigned for those who need some backup support and understanding by proving that nobody with MS should or can be left behind. This year’s theme – independence – is quite apt as global economies plummeted and people with disabilities and/or MS wondered if, for example, their employment or lack thereof would eat away at their independence.
In broader terms, independence is equal to freedom of many kinds. Nobody likes seeing that freedom taken away, so this year’s WMSD-theme also means that people are able to speak up about other ways in which they achieve and keep that independence.
Of course, independence consists of many layers subdivided into more layers, like being in control of your life; making informed decisions about your medical care; choosing activities, a routine to your days or simply, taking ownership of your life.
The benefits of being independent are legion. On a personal level, it boosts your self-confidence and reduces stress when done right. Economic freedom means you don’t have to rely on others and it can therefore make you feel accomplished. Independence also broadens your horizons and raises your self-esteem to where it should be. After all, we all deserve to be a bright, shining star.
Take, for example, my employment/independence story. Diagnosed 2.5 years after emigrating to Ireland, getting an MS-diagnosis was the last thing I ever thought would happen to me. After all, I was young, happy, working hard and enjoying life as much as possible.
During the following four years, my independence was slowly turning into another setback because I realised that yes, it was time to retire. It still took the better part of 18 months to accept that my neurologist, GP, occupational doctor and family and friends were right.
I was 36.5 years old – 16 years in my mind but 80 years old on a physical level – and there I was.
Too young. Too stupid. Too ignorant to what had been building up in my brain, optic nerves, and spinal cord.
But, I was only 36.5 years old – 16 years in my mind and 36.5 if I played my cards right by sticking to hospital appointments, pharmaceutical warfare, and proper dietary needs. Remaining independent was, and still is, utterly important.
Seeing that independence questioned, though, wasn’t easy. Anyone who emigrates needs a good dose of self-confidence as you cannot do so without being a bit of a rebel and seriously sure about where you want your life to go, so I was never short of independence. Or, like my late GP once said: “Willeke is so fiercely independent that, even if remotely possible, she would give herself CPR if her heart stopped beating.”
Thankfully, the Irish MS society was on hand to help me shape my ‘new’ future after retiring, and I will be forever grateful they were willing to selflessly help that quirky, foreign girl with the impossible-to-pronounce name. Whereas life as I once knew it would never be the same again, my future looked and still looks ever so brightly.
When asked if I would return to paid employment if a cure for MS or better symptom treatment was out there, on a financial level I would answer “Absolutely!” On a mental and emotional level, though, writing and advocacy are what I feel I need to do especially because I can do so according to my level of limitations at that given moment. I decide when enough is enough, and I do not have to listen to an employer preventing me from resting when I so badly need to during the day.
Consequently, independence is never a static moment or event. It’s continuously moving, shaking up days or weeks, and even longer periods of time. It’s a shape-shifting entity that you control, but also one that can be enhanced by other people’s input.
No matter what tags you assign to independence or in whichever form you live it, trying to be independent is worth fighting for. In the end, independence is a mind-thing and a right. Yes, it requires being assertive and having patience, but gaining or regaining independence is worth the wait.
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.