“Change is good,” so they say.
I totally agree, in fact, I welcome change with open arms.
Afraid of new challenges? No, not me.
Change is good.
Hey, listen, change is great!
I emigrated, left my native country and started a new life in the country of my dreams and started a job in IT, a polar-opposite of my library job – and studies – in my native country. Do not tell me that I don’t like a challenge, so, because I do.
I do, but not when I’m sitting in very new surroundings, in a roasting hot 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 of information I so desperately needed 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 my neurologist say those very words like shattered glass falling to the floor.
No, I didn’t want to adapt to change. 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?
Mrs. H., I appreciate what you are telling me, but 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.
In my mind, I kept thinking, “What?! Like I don’t know what to get “better”, doctor! 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!”
((The fact that I couldn’t even get up the staircase of fatigue without crying or that my face kept trying to distance itself from my skull, was proof enough that I needed to listen, and listen very carefully to my Professor in Neurology))
Later that day, a forced dinner with friends because “You just heard the worst possible news and because 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 was in “denial” because I !!was hungry because I 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 on earth and when did they change into make-believe neurologists when I never asked them to be?
Why did the dynamics of our friendships change so suddenly?
Ha, I know better. I have the flamin’ illness! What the hell did they know about my new status as holder of a lifelong, incurable, degenerative and progressive disease? Stop treating me like an invalid!
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 afterward.
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.
I considered knowing which illness now lived inside my brain and spinal cord 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 counts.
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