The first day

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“Change is good,” so they say.

I totally agree, in fact, I welcome change with open arms.

Afraid of new challenges? No, not me. Because change is good.

Hey, change is great.

I emigrated, left my native country and started a new life in the country of my dreams. Started a job opposite of what I studied for, and opposite of what I worked as in my native country. Do not tell me that I don’t like a challenge, because I do.

I do, but not when I’m sitting in very new surroundings, in a hospital waiting room of a well-known Irish neurologist. Little did I know that one day, she would become pivotal in my life’s quest for all things positive.

In fact, I wished I had her brain, her perfect brain full with information I so desperately need to function, to continue functioning.

Almost nine years ago, in those new surroundings, I didn’t want to adapt to what she said. “From now on you will have to change your lifestyle, like work.” I still hear her say those very words like shattered glass falling to the floor.

No, I didn’t want to adapt to change that day. Not this kind of change. Not what she was asking me to do.

Was it even asking? Or was my newly-acquired-best-buddy-in-neurology telling me what to do, instead of asking?

You simply cannot tell me what to do. I only moved to Ireland 2 years, 6 months, 12 days and about 23 hours ago. You cannot just ask me to change anything, let alone my lifestyle and my job!

So I have MS. Big deal. I know what I need to do, and that is not changing my lifestyle.

What?! Like I don’t know what to change. I am fine! Look, I am walking. I am talking. I can move my arms and legs up and down and I bet I can climb a ladder also. I am going back to work tomorrow and I am going to have a great time!

Later that day, a forced dinner with friends because “you just heard absolutely awful news and you are in denial.” (Yeah, right. I am so not in denial, I am fine, and I am  going to work tomorrow).

In all honesty, I just needed food because I was hungry and had not been eating properly in the days before the diagnosis. In the restaurant however, all I could hear was noise. Buzzing sounds. As if bees were living in my ears. Talk, talk, talk… talk.

Why did my friends make more hoopla about it than I did when I was silently dealing with things?

How and when did they suddenly change into make-believe neurologists when I never asked them to be?

Why did the dynamics of our friendships change so suddenly?

What the hell did they know about my new status as holder of a lifelong, incurable, degenerative and progressive illness? (Sure, others with MS in the hospital waiting room already told me about all those nice, shiny new medical words that would one day become my own vocabulary).

More buzzing.

More wondering.

More knowing.

More needing.

More wanting.

Less living?

Oddly so, when I went to bed later that day, I felt cheerful in a curious kind of way.

Rather happy, knowing that I was not joking about not being able to get up the staircase of fatigue after coming home from work.

Rather happy, knowing that I “was not a Monday morning case, refusing to go to work,” my hospital consultant told me afterwards.

Rather happy, knowing there’s actually a name attached to that funny feeling of floors moving up and down, to that awful, wretched facial pain also called trigeminal neuralgia, AKA “the suicide disease” because of the severity of the pain.

Knowing which illness now lived inside my brain and spinal cord, was half the battle won already.

Nine years later, I tell myself “Do not deny your diagnosis, but try to defy your verdict.”

True, I am now a bit slower when I walk and talk, and I need more time processing things inside my brain. I also gained a few pounds around the waist because of steroid treatment alongside all my other medication, but denial was short-lived, and I now have a new life.

It wasn’t what I had dreamed of, but it’s here to stay.

Making the most of it, is what now counts.

© WVE and Ireland, MS and Me, 2011-2014. Unauthorised 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.

5 Comments

    • Billie says:

      Thank you! Exactly so, it is hard for others also. MS is like a ripple in water, it spreads far out, even in places you didn’t expect it to go :D

      Like

  1. Pingback: Ten happy MS years | Ireland, Multiple Sclerosis & Me

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