Author Archives for Willeke

About Willeke

Quirky, tenacious, and neurologically compromised expat in Ireland writing about life with multiple sclerosis.

Eyes of sorrow

Image blue eyeWith World MS Day 2015 now gone for another 365 days, I shared a few words yesterday about one of the things I hardly ever talk about in regards to my own MS: the day I woke  up without sight in my left eye, and the subsequent fear of permanently losing my eyesight.

We use our eyes to learn, navigate, assess and appreciate. They help our brain understand our environment and sometimes, as peculiar as it sounds, we use them to listen. Continue reading

#strongerthanms with MS Ireland

World MS Day image 2015“So, how’s the book?”

I don’t lack ambition to keep on writing, but I have an over-abundance of low energy levels, so I must ask people to use their patience… patiently when dealing with me.

Like all cowards, the illness I write about lurks in the dark within my central nervous system, and it sometimes rises to the surface in unflattering ways. My body does a good job in concealing it for now, but every so often I worry about it rising to the surface and staying there… permanently. Continue reading

World MS Day 2015 Around the World

MS Day 2015For the second year in a row, Access is the main topic of World MS Day.For a quick look at what Accessibility meant to me in 2014, please click here.

Access means a lot of things, so do volunteer in if you want to help others achieve every day issues. Don’t forget to tag your events with #strongerthanMS and @WorldMSDay.

Access

Our campaign theme for 2015 is access: access to diagnosis, treatment and support; access to buildings, travel and leisure facilities; and access to education, training and employment.

What does access mean?

When we talk about equality of access for people with MS we mean access to a social, political and economic life. Equality of access doesn’t just mean physical access to buildings, but access to the same tools, services and facilities that people who do not have MS enjoy.

Why access?

The barriers to access faced by people with MS vary depending on where they are and what their symptoms are. We would like to reflect this variety by sharing different people’s experiences of access barriers around the world. We hope this will help people understand the complex nature of MS and help unite the global MS movement.

Examples of access issues

  • Facilities
    There’s only one MRI scanner in your country and it’s a 10 hour drive away.
  • Treatment
    A treatment is available for your condition but it’s too expensive.
  • Medicine
    The medicine you need isn’t available in your country, even though it is in other places.
  • Social life
    When you meet new people it’s hard to decide how to tell them about your MS.
  • Family life
    You worry that your partner will leave you when your MS symptoms become less manageable.
  • Jobs
    You want to work but your boss doesn’t understand MS or how to help you.
  • Relationships
    Because of your MS you worry about finding a partner who will understand you.
  • Public transport
    The buses in your area don’t have ramps or spaces for wheelchairs.
  • Children
    You worry that your children will lose out on opportunities because they’re caring for you.
  • Work
    Disability legislation in your country doesn’t include MS.
  • Understanding
    Your children don’t understand why some days you can’t run around the park with them.
  • Buildings
    Your have to go up a flight of stairs to see your local doctor and there’s no lift.
  • Information
    You’ve been diagnosed with MS but you have no information about treatment or support in your own language.
  • Specialist doctors
    There’s a shortage of neurologists in your area, you have to wait six months to see one.
  • Getting around
    There are days when you can’t walk without help, but your government doesn’t give walking aids away and you can’t afford to buy one.
  • Education
    You want to go to college but you don’t think you can work while you study to support yourself.

For updates on what is happening around the world, please click here.​___________________________________________________________________________________________________

The love revolution

hopeVox populi:
Turnout: 1,949,725
Yes: 1,201,607
No: 734,300
62.1% vs 37.9%

Today, Ireland turned a corner by becoming the first country in the world to approve gay marriage by popular vote. A corner a lot of people have been struggling with for decades. A fear that many were afraid of voicing, afraid of a Catholic Church still instilling that famous Irish guilt in many.

Religion has always been a tough subject in Ireland as  it continuously interfered in issues it had no clue about at all. Contraception was illegal until 1980, and it was illegal for single people to buy a condom until 1992. There was a constitutional ban on divorce until 1995 (and can still take +5 years to be finalised), and homosexuality was a criminal offense until the 1990s. While the Catholic Church itself harbours and moves around paedophile priests without punishing them, and nuns chastised pregnant girls and women in its Magdalen Laundries, it continued punishing its flock for having ‘impure thoughts’. Continue reading

Hope cures old wounds

10505565_271992656337777_3335423019850516985_n‘Hypochondria? It’s the only disease I haven’t met yet.’ One of the better jokes I can actually remember, as I simply don’t do long ones.

MS? Awkward, puzzling, easier said than done, and the type of illness that carries this tagline: “the illness is mine, but the tragedy theirs” when asked how the family feels about your condition. Buzzwords that don’t exactly calm down an overactive mind.

Any illness is unwelcome, that much we can agree on. MS can strike in so many different ways that your life at times resembles a war zone. When I entered the MS academy, I read the small print and knew it wouldn’t be a 365-day holiday. But, if one good thing has come from being diagnosed ten years ago, it’s the perception that no matter what happens, life goes on.

And boy, does it go on. Continue reading

Kick Ass Ireland

Sliabh Liag image

Sliabh Liag, County Donegal

Some days I sit still and think about how my life became a dream full-circle.

There’s William Butler Yeats, James Joyce and Brendan Behan.

Seamus Heaney, Jonathan Swift, Colm Tóibín and Samuel Beckett.

Patrick Kavanagh, George Bernard Shaw and Lady Augusta.

The Lake Isle of Innisfree, Land of Heart’s Desire and Yeats’s grave.

Dubliners, Ulysses and Bloomsday.

The mountains, lakes, Dublin, Sligo and the Shannon.

Brú na Boinne, Corcaigh, Beara, Daingean Uí Chúis, Zú Bhaile Átha Cliath, craic agus ceol.

Brian Ború, Michael Collins, Theobald Wolfe Tone and Daniel O’Connell.

Seven hundred years of cruelty, yet still able to endure hard times.

Writers, dancers, taps, tin whistles and uilleann pipes.

Books, almighty libraries and small bookshops selling secrets.

Friendships gained, lost and renewed.

New alliances forged in foothills and strengthened on mountain tops.

“You, the Irish” becoming “Us Irish”.

Utter dedication, loyalty, heartfelt passion and amazement.

Innate decency, long chats and fickle fiddlers, the smallest dance floors filled to the brim.

Haunting voices singing songs at night, softer voices talking about Irish history near the open fire.

Family falling for that Irish dream and character, its people and its truth.

Twelve and a half years of dreaming, believing, seeing and becoming.

Twelve and a half years and counting.

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About Willeke

Neurologically challenged by MS and personally by her will to succeed, Willeke is a disability awareness advocate seeking to improve neurological/MS services in Ireland. By highlighting difficult issues that come with such a diagnosis, she hopes her tenacity can bring some dignity to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.

©WVE and Ireland, Multiple Sclerosis & Me, 2011-2015. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is 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.

MRI scans, hope or defeat

MS images

A war zone. It sounded like a war zone. Sound effects of an AK47 gun amid MRI vibrations and banging noises usually taking place on construction sites. Tinnitus adding an overlay I can miss like never before.

Magnetic resonance imaging is a godsend to ill people. In regards to MS, it gives a clear view on what is physically going wrong inside the brain, spinal cord and optic nerves. Add some contrast fluid, and yours can lit up like a Christmas tree, just like mine did this morning. Or so I was told.

Sudden, loud sounds twitches my head involuntarily. The upstairs part of my body locked in a mask, I now realise how Leo felt when he played The Man in the Iron Mask. Continue reading

World MS Day 2015

WMSD2015

For more on World MS Day 2015, check these links:

Twitter – Tweet @WorldMSDay and/or use #strongerthanMS

Facebook – World Multiple Sclerosis (MS) Day

Instagram – worldmsday

YouTube – World MS Day

Pinterest – World MS Day

___________________________________________________________________________________________________

About Willeke

Neurologically challenged by MS and personally by her will to succeed, Willeke is a disability awareness advocate seeking to improve neurological/MS services in Ireland. By highlighting difficult issues that come with such a diagnosis, she hopes her tenacity can bring some dignity to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.

©WVE and Ireland, Multiple Sclerosis & Me, 2011-2015. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is 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.

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