I was afraid.
Each time I experienced gastrointestinal changes, I tried not to worry.
Secretly, I did.
Even when I tried to get this worry down on paper, I failed to finish two consecutive sentences. One sentence if I allowed my interior monologue to perform a James Joyce oration without punctuation.
However, that was not me. I usually didn’t let chaos overwhelm me. My path of life had on regular intervals been paved with pandemonium, so I was well-used to it.
Lost my only sibling.
Lost my stepdad.
Lost my granny, cousin and uncle.
Diagnosed with a neurodegenerative illness.
Diagnosed with a hospital acquired superbug.
All in the space of 3 years.
If my first name was Anarchy, everyone would believe it to be the perfect name.
“Strength does not come from physical capacity.
It comes from an indomitable will.”
Within Gandhi’s description of strength, was some fear also, and within that fear, there was indignity. A hospital-acquired superbug wasn’t meant to be mine. I wasn’t an elderly person, I certainly didn’t live in unclean housing and I hardly ever used antibiotics.
Perhaps pessimism, unhappiness and disaster would have fitted in that same paragraph. Only, I unequivocally and unconditionally refused to be ill. Clostridium Difficile indeed wasn’t mine to get, or to give in to, so I fought my way back. I am not now, never have been and will never be one to give up without at least trying five different ways to solve a riddle.
I wasn’t ready to go. I had lived enough for two lives, but I wanted a third.
“You have power over your mind – not outside events.
Realize this, and you will find strength.”
I found the above text in one of my old notebooks, and was struck at how I felt back then. I was 35 and realized that I had more years in front of me than were behind me. True, I have gone through a few physical hiccups since the superbug, but looking back, I sailed through them without as much as a break in the waves.
I’m 41 now, and somewhere down the line my attitude gradually changed. I’m still not ready to go. Some of the pains MS has saddled me up with – facial pain or trigeminal neuralgia – has willingly sent some people to their death. I, however, will not make my mum childless because of my inability to deal with physical pain.
People are the only creatures who are so preoccupied with dying, death, wakes and funerals. I rather refer to it as “passing over”. Where to? I have absolutely no idea, and nor do I need to, I just know it’s the next stage in life, and it’s not like Dante’s Inferno. Hell (excuse the pun), even if it was pitch dark down there, and it turns out to be one vast, timeless space of nothingness, I’d be happy. It makes living that much better. And happier.
Whenever I used to talk with one of my friends about sorting out life-insurance and writing wills, she said, “But isn’t it a bit morbid if you want to get life insurance to pay for your own funeral?” Sure, of course it’s morbid, the only way to get out of it is by being immortal, but sadly, I belong to a different breed of human beings.
“In the depth of winter,
I finally learned that within me there lay an invincible summer.”
“There is no end.
There is no beginning.
There is only the passion of life.”
Willeke is a disability awareness advocate and originator of Ireland, Multiple Sclerosis & Me. She actively writes for other people’s blogs as well as for the MS Society of Ireland blog, and in doing so, raise awareness about life with multiple sclerosis at home and abroad. Learn more about her here and connect with her on Twitter, Facebook and Google+.
© 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.