Learning to be sick

The secret of learning to be sick is this:

Illness doesn’t make you less of what you were.

You are still you.

(Tony Snow)

© WVE and Ireland, MS and Me, 2011-2013. 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 WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

James Joyce, Bloomsday and onions

James Joyce, one of the controversial omission...

James Joyce, one of the controversial omissions of the Literature Prize (Photo credit: Wikipedia)

Last Saturday Ireland celebrated Bloomsday, a day that stands out each year because of the many faces Irish people, foreign residents and visitors alike give it.

For those unknown to what Bloomsday is, Leopold Bloom is the main character in James Joyce’s Ulysses. The story is set in and around Dublin on June 16th, 1904. In 1954 Bloomsday became what it is today and Leopold Bloom and Joyce got their just rewards: a day named after them and a day to showcase the wonderful artistry of Joyce.

I’ve always admired Irish authors; they seem to have a fantastic sense of imagination and they have the gift of putting this into words, much like the Greeks did with their myths. My love for them is old, very old and combined with my love for literature and books; Bloomsday 2012 in the National Library of Ireland was going to be big.

And it truly was as I was reminded of why I love Ireland so much (after all, one of the reasons I wanted to live in Ireland was because of my love for its literature). Senator David Norris, once a Trinity College lecturer and a member of Seanad Éireann, has been credited with being “almost single-handedly responsible for rehabilitating James Joyce in once disapproving Irish eyes”. David Norris holds a degree of M.A. in English Literature and Language in Trinity College and was elected a Foundation Scholar in that subject before achieving a 1st Class Moderatorship. On Bloomsday 2012 he gave an amazing talk on James Joyce in the National Library of Ireland, something I will remember for many years to come. Continue reading

A man’s illness

A man’s illness is his private territory and,

no matter how much he loves you and how close you are,

you stay an outsider.

You are healthy.

(Lauren Bacall)

© WVE and Ireland, MS and Me, 2011-2013. 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 WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

World MS Day 2012

Tomorrow is World MS Day, highlighting the need for more research, better medication and spreading awareness of what MS is and what it does to people who have it.

I often think that MS is a “lonely” illness. Because a lot of symptoms are misunderstood and/or not taken seriously by people who don’t have multiple sclerosis, MSers have to educate people in their environment about it. That doesn’t always go easily, and it often takes months if not years before some people finally realize that MS is a serious condition…

“Lonely” because very often people around you simply do not know what it feels like to have maddening eye pains, or extreme fatigue. This is not because those people are not ranked high on the IQ ladder, but because some symptoms are difficult to explain and rarely felt by people around you. Continue reading

World MS Day 2012

Tomorrow is World MS Day, highlighting the need for more research, better medication and spreading awareness of what MS is and what it does to people who have it.

I often think that MS is a “lonely” illness. Because a lot of symptoms are misunderstood and/or not taken seriously by people who don’t have multiple sclerosis, MSers have to educate people in their environment about it. That doesn’t always go easily, and it often takes months if not years before some people finally realize that MS is a serious condition…

“Lonely” because very often people around you simply do not know what it feels like to have maddening eye pains, or extreme fatigue. This is not because those people are not ranked high on the IQ ladder, but because some symptoms are difficult to explain and rarely felt by people around you. Continue reading

Gilenya in Ireland, part 2

It’s been a tumultuous week. I had my neurological checkup in one of Dublin’s biggest hospitals. It created ripples of emotions, questions and very few answers and as expected, Copaxone will remain my disease modifying drug (DMD) for the next while. Off I went so re-adjusting my hopes.

My neurologist has studied at one of the best Irish universities as well as Harvard, so she knows a thing or two about MS. I tend to think of myself as “an expert-patient of myself” because I know how this or that symptom feels, while my neurologist knows the place of the neurons, myelin sheets and where the damage really is in my brain. In short, she’s the expert, and my love-hate relationship with Copaxone will last a bit longer than expected. Continue reading

World MS Day 2012: Letter to my newly diagnosed self

Two years ago, the organisation of World MS Day, asked us to write a letter to our newly diagnoses self, no matter how long ago we were diagnosed: “If asked to write a letter to yourself today, to be read on the day you were first diagnosed, what would you say? Would you tell yourself to slow down and take stock? Or tell yourself to dive head first into living?”

Dear me,

“You have mild MS…”

“Mild” is good, “mild” means that I can keep on working, “mild” means that I will be able to live with it.

“It is just “mild” so nothing is wrong with me…”

I remember every single minute of today, of my diagnosis. What was said; done; not acknowledged.

I was told I would have to change my lifestyle. I think these words are even worse than hearing I have mild MS. I don’t want to change my lifestyle, and besides, how do you change your lifestyle?

How, when all this started?

Denial is setting in because I don’t want this illness inside me, I want to live, to travel, to study, to work.

To work. Will I tell my employer?

Will I tell my colleagues, friends, family?

Denial somehow turning into joy because I am not imaging the symptoms I have, because the consultant in hospital thought I was “just-another-Monday-morning-I-don’t-want-to-go-to-work-today” case when I checked myself in hospital just weeks before my diagnosis. Joy because it is not a tumour. Joy because I want to live, because I need to live.

So here I am now. An illness that cannot be cured, and I am told to change my lifestyle. I am not going to because this is my life, and I want to live. And I will. I will work, and enjoy life, every single second of it. Because this life is only just beginning.

“You look after yourself girl…”

I am, and I will, no matter how far this illness will take me.

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2014. 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.

World MS Day 2012: Letter to my newly diagnosed self

Two years ago, the organisation of World MS Day, asked us to write a letter to our newly diagnoses self, no matter how long ago we were diagnosed: “If asked to write a letter to yourself today, to be read on the day you were first diagnosed, what would you say? Would you tell yourself to slow down and take stock? Or tell yourself to dive head first into living?”

Dear me,

“You have mild MS…”

“Mild” is good, “mild” means that I can keep on working, “mild” means that I will be able to live with it.

“It is just “mild” so nothing is wrong with me…”

I remember every single minute of today, of my diagnosis. What was said; done; not acknowledged.

I was told I would have to change my lifestyle. I think these words are even worse than hearing I have mild MS. I don’t want to change my lifestyle, and besides, how do you change your lifestyle?

How, when all this started?

Denial is setting in because I don’t want this illness inside me, I want to live, to travel, to study, to work.

To work. Will I tell my employer?

Will I tell my colleagues, friends, family?

Denial somehow turning into joy because I am not imaging the symptoms I have because the consultant in hospital thought I was “just-another-Monday-morning-I-don’t-want-to-go-to-work-today” case when I checked myself in hospital just weeks before my diagnosis. Joy because it is not a tumour. Joy because I want to live, because I need to live.

So here I am now. An illness that cannot be cured, and I am told to change my lifestyle. I am not going to because this is my life, and I want to live. And I will. I will work, and enjoy life, every single second of it. Because this life is only just beginning.

“You look after yourself, girl…”

I am, and I will, no matter how far this illness will take me.

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2014. 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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