Why I love advocacy (and you should too!)

Stretched out hands reaching for each other

Did your life ever feel like it needed reclassification?

I can see you raising your eyebrows, but please stick with me.

Perhaps a few bits and bobs inside yours needed to be sorted like you would sort the books in your living room?

When MS derails your life a little to left or more firmly to the right, you can always center things again. You add a few events in one category while giving a little bit more space in another. Or, you can even move it to another room, permanently.

That’s where my life needs reclassification.

It simply needs a little more zing, oomph or pizzazz.

It hasn’t been an easy time.

But, on the other side of the spectrum, it hasn’t really been truly depressing.

It just was…

Nah.

Just.

Nah.

Disappointing, the kind that feels as if the rug was pulled from under your feet five times over if you really want to press for an answer. And peculiar in a non-facetious kinda way.

To add to this, for the last three days the skin on my upper body has found an enemy in my clothes.

Add a fever for about a week.

Facial pain.

Eye pain.

An absurd level of fatigue.

Oh, and a massive dose of cursing things that abuse my state of play.

Is it an exacerbation?

God, I hate that word.

It belongs in consultant rooms and hospital wards. Not my head.

Or, call it a relapse instead?

Nope.

That word makes people think you’ve fallen off the alcohol-wagon when yours truly never drinks alcohol, to begin with.

A flare-up?

Mmm… maybe.

Today, I just want to call it an unbelievable pain in the ass because it makes me feel in need of a huge cuddle and hot chocolate milk. And Ben & Jerry’s ice cream.

Excuse the bad lingo. It’s an unbelievable pain in the proverbial backside of an otherwise very stubborn animal called Donkey.

The chocolate milk still stands. As does the ice cream.

Preferably delivered by my favourite person.

So, I’m just going to let it all out here.

I will try to keep it from turning into a Joycean-type stream-of-consciousness.

Unlike Episode 18 in James Joyce’s Ulysses, mine will have punctuation, though.

So.

Let me start over.

With more positivity.

The Irish rugby team won the 6 Nations championship on Saturday!

With one game to play.

Against England. In London. On Saint Patrick’s Day.

You get the idea. It’ll be big, very BIG. I’ll have tension headache two days in advance.

On a more serious but equally happy note, I was notified that my blog will be featured on an American health website that publishes very nice MS content.

More news to follow.

Still blushing and mighty ecstatic, because I needed such a lift.

I honestly and truly did.

You see, I write and I talk, so this makes me the non-neophyte communications director of my own life. But, every so often – approximately three times a year – I have my 5 seconds of feeling sorry for myself.

In that very brief space of time, I need to realign thoughts, dreams and the future.

Homer Simpson would say, “Not easy when your brain is kinda slow on the uptake.”

No matter when you were diagnosed – last week or 13 years ago – there might be moments when you feel like screaming at the top of your lungs when symptoms take a little too long to disappear, or because people are just getting on your nerves.

No pun intended, dear central nervous system.

Or, you hope that someone will hear your silence, who will listen for forgotten and unspoken words, or hear those that are deliberately left unsaid.

In my case, there are times where I pray that some will understand how deafening my silence needs to be right now.

Facial pain sometimes arrives with trepidation. Will I or won’t I say something when I need to keep quiet? How will it arrive on the other side?

That was me a few weeks ago.

MS seemed to get in the way of, well… just me.

Image Let's Join the MS Movement

But, change came from a very unlikely angle.

Parkland, Florida.

School shootings are a very foreign thing in Europe. We just cannot understand why you can buy military guns three years before you’re allowed to buy a beer.

This was different. Glued to CNN, I tried to grasp the enormity as I watched the news develop. When the first interviews went live immediately after the shooting, you could sense that through the fear and the tears, the impact of this tragedy would evolve into something more.

Kids aged 13 to 18 spoke up. With dignity, eloquence, strength, and honour.

They woke up the US.

They woke up the rest of the world.

And, they woke me up.

Brought me to tears, in fact, not just angered by the many missed hints that could have prevented the event, but also in amazement and inspiration for the gravitas portrayed by children.

I was reminded of the importance of being part of the solution instead of the problem in our respective countries. By focusing and facing issues head-on when policymakers refuse to take notice, people can lay bare the many hoops that allow discrimination to take place. It’s therefore in everybody’s best interest to drive for solutions-oriented discussions and to not give in until reform is written in law.

Humbled by their words and strength, teenage children who looked into the barrel of a gun told me it was time to take up my own advocacy role again, to put my stamp on social justice no matter how small that stamp may be.

Sadly, though, I’ve seen a reduction in the number of advocacy events in Ireland and abroad.

It breaks my heart because I miss it dearly.

The truth?

Last year, I was either chasing hospital appointmentsstudying or too caught up in foreign politics and too little in local issues.

My bad.

The happiest years since being diagnosed have been those while advocating because I feel strongly about societal problems that revolve around socio-medical issues of people with disabilities. There are thousands of people who want to be heardyet are waiting for a willing, listening ear. Chasing social justice issues has always suited me and has always been part of my psyche.

live for attending meetings, conferences and writing assignments because every aspect of them change me for the better. The past few years have therefore been excellent. Stopping altogether would be heartbreaking, and cause more hurt than I could endure right now.

You see, I receive the best of both worlds when actively involved in societal issues. Despite having an outgoing nature and loving people, I’m often happiest when I’m alone while researching issues, writing about them, looking forward to new events and thinking of what else needs and can be fixed.

Perhaps you can label me as being ‘selectively-social’ instead of being ‘antisocial.’

Nah…

Just call it introverting while wanting to change the world not only for those with MS but those with other kinds of disabilityrelated issues also.

Funnily enough, writing this post has caused my thoughts to fall into their rightful place again, no matter how whimsical and unconventional they must have seemed.


© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2018. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited.

 

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Writer of irelandms.com | Top 10 Blog of 2018, by Everyday Health | Top 50 Blog on the Web 2017 | Ireland Blog Award Finalist 2014, 2015, 2017 | Contributor to MS Ireland community blog | Contributor to Living Like You, a Novartis sponsored MS blog |

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