The day of your diagnosis will more than likely be burned on your brain, no matter how long ago it was.
Later, the day you realise that the word MS didn’t even cross your lips in the last 24 hours, is worth an ovation.
Eventually, the day you exchange worry for hope and defeat for independence from your chronic illness is worth a week-long celebration.
This sounds easy to achieve if you’re living with mild relapsing/remitting MS, where you have defined periods of reduced disease activity. On the other hand, if you live with progressive MS, I can only imagine that hope can sometimes seem like a distant ray of sunshine that will be gone the next time you blink your eyes. It would be wrong to forget or marginalise anyone’s experiences, so, especially when hope is a verb used by everyone with MS.
To hope, you need to set realistic expectations. Accept MS as is, and build up hope from thereon in.
To hope, you need motivation, determination and the purpose to stop self-defeating yourself. Some people find hope among their family and friends, in travelling, books or in religion, or simply in their own management of their illness and knowing that at least today, they want to live, and live well.
To hope is to be convinced that life with MS is worth living. It is knowing that despite being stuck at home or in a wheelchair every day, it does not stop you from looking forward to a new day, with new challenges while acknowledging past mistakes.
The many hospital visits, medication, mobility aids, etc. are not proof that you are different from others; they are proof that today, you use those tools to create a better tomorrow. And in that empowering moment, the erosion of negativity in your life stops, and hope is found.
From a personal point of view, I saw hope smashed on several occasions throughout my life. Each time it happened, it required having to grasp it by its tail and by gob, pray to never let go again.
Two and a half years after moving to Ireland for example, I was still full of hope of finding a nice Irish lad with red cheeks to settle down somewhere on the west coast. After a few months of peculiar symptoms that seemed like science fiction, my consultant at Beaumont Hospital, said, “You have MS.” Hope, dreams and the reverie about that nice Irish lad smashed into a seemingly impregnable brick wall.
On hearing those three words, hope had all but gone.
I soon realised, though, that pain is fierce, but so is hope. No matter how sick I was or how much I wanted to curl up and never leave my bed again, people cannot survive without feeling hopeful. I owed it to myself to hit the reset button to try to make something new from what was left of my life.
Oddly enough, I found hope and therefore strength where I least expected it, namely in advocating, and how can I forget, in my mum’s brilliant cups of coffee and continuous jokes. I didn’t meet an Irish lad with red cheeks, but I feel happier than I used to be before being diagnosed with MS.
In the end, feeling hopeful has a silver lining as well; it is always a new opportunity to make things better and it can be achieved by so many different things, actions and people. An Irish television-mammy recently said, “You can’t have courage unless you are afraid” and I wholeheartedly agree.
So, get your happy on, and let’s be fiercely hopeful together because if you have hope, you have everything.
If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter
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