Although I wrote the following post and updated it a good while ago, the subject sometimes finds its way back into my mind and reveals itself as something “ugly”. After all, what can be uglier than death, than feeling yourself slip into darkness?
If that was not ugly enough, thoughts about the actions of certain people would make it feel even worse, as if you were just imagining things and what was happening was ‘not that bad’. Having seen what ‘in extremis’ is like, what dwindling closer and closer to my six feet under feels like… it is something that made me realise what life is really all about.
So here we go… mor(t)ality…
Last year I heard the news that a friend of mine – who also has MS – passed away. A few weeks later another friend with MS died, and a few months later another one. Life can be unkind and hard, especially when young lives are taken from us much too early.
I hope my friends can now rest in peace, free from their daily aches and pains. Although MS is not a terminal illness, and it is not a direct killer, it does make you quite vulnerable because of your impaired immune system. And that is where the problems start, and how I was suddenly too close for comfort, too near my own funeral.
Mortality is when living things stop being around and start being a long, painful memory or just a flicker of a in the back of your mind. Mortality we all have to deal with it at some point in our lives, and between November 2007 and March 2008, it almost seemed my time had come. I only talked about it with my mum up until 2012 because I didn’t and still don’t want to scare people with bad MS stories.
Because my friends passed away in such a short period of time, I was confronted with my own memories of slipping away. Writing about it was a catharsis: I finally found the strength to confront my own mortality and found a place for it in my life. The odd time it still grasps me though, it still makes me feel angry and like a failure because surely I should be able to maintain a reasonably good handle on my illness.
I was under the impression that mortality only affected the old.
Having multiple sclerosis and a few other conditions, I was and still am physically weak but I never thought that mortality was me.
Anyone but me.
For about four to five months I saw my and the emergency room quite regularly because nobody knew what was going on inside me, but not the MS-kind-of-ill. It was diagnosed as a stomach bug, gallstones or just stress.
But, whatever was brewing inside me kept on harassing me and I was gradually getting worse. With feeling run over by a truck and train at the same time, my thoughts also fought to stay positive, to keep on working.
Eventually, in March 2008 I was so ill I knew that something serious was going on, so I went to the hospital once again.
Four days later I was rushed into an operating room for nurses that I was getting worse as time went on. Four surgery doctors tried getting a drip into my veins, so I had two doctors on each side of me prodding and pocking my arms. I fell into a slumber and when I woke up outside the operating room, a nurse said “And she’s so young, too young for anyone with this illness” to take a look inside me as I told
Result: Clostridium Difficile, otherwise known as or C. Difficile. The head of surgery came in and told me that I was quite ill but that the medical staff would look after me. I was put in an isolation room because I had to avoid contact with other people.
My first thought was “Sure, at least I will be able to sleep if I’m alone in a room!” But I had no clue what C. Diff was, so I looked it up on my mobile phone’s web search. Shock and horror went through me when I read “superbug more harmful than MRSA; elderly people and those with impaired immune systems…”
I was indeed much too young to have this illness, in fact, I should not have this illness at all, but the clue “impaired immune system” said everything.
As always, the nurses were quite friendly and they served aggressive treatment in the form of big bags of intravenous antibiotics (Metronidazole) for a good few days. When I was finally allowed to return to work three weeks later, I felt so alive and so awake. Having looked at my graveside, I suddenly knew what life was all about. I seemed so much more aware as if I had been given a brand new brain and a new lease of life.
The superbug that had been staring in my eyes for weeks and months seemed long gone, but it left me wondering about life and those I love and cherish. I had been dragged in too deep, and the abyss had been the morning before the rush into surgery.
My mum called asking why I hadn’t called her yet myself. I told her the nurses were busy looking after me and that I’d call her back when they were finished. But I didn’t until later in the day and although I absolutely hate lies and liars, I couldn’t face dealing with anyone at that moment, I was too ill and too far gone.
Only later I realized that that phone call could have been the last time ever I might have talked to my mum. I had no strength left to speak because I could not keep food in and the pain of the superbug was literally killing me. The abyss was feeling so empty but I didn’t want to die, and I wasn’t going to die one year after my only sibling passed away. I wasn’t going to make my mum childless in the space of 2 years. I was not going to give in, yet it was hard to want to stay alive that day but I had to.
And so we arrive at amorality. , or rather Two people in my environment didn’t believe I had a superbug and that I could be this ill. Knowing that hurt more than a hundred knives going through my body all at once.
My body was pushed to its limits yet people had the nerve to doubt what happened to me. They thought I was lying because after all, their idea of what my illness was or should be like was always correct and I was “obviously wrong” and/or I was “acting up”
(They must have received a medical degree in secret because they were not healthcare workers, so I still wonder where their nerve to judge me on very complex neurology and immunology issues stem from)
I didn’t lie back then and I’m still not lying about it because there was and still is nothing to gain by telling lies like this; I had/have enough on my mind without having to spin lies about something as serious as this. Besides, I have a nice piece of paperwork that tells is just like it is: C. Difficile.
Loud and clear.
Anyone daring to judge anyone on such a serious illness says more about the person than it does about me, n’est-ce pas?
Knowing what is moral is, or should be, part of people’s upbringing. It should teach people how to differentiate between what’s right and what’s wrong after all that’s why we have a conscience located somewhere in our brain.
Amorality is when personal conduct shows disbelief or indifference towards or principles. Not believing a friend who is seriously ill shows an absolute lack of insight, friendship and morals; and when such disbelief is added, good friendships are damaged.
Finding beauty, or a sense of hope, in this case, is still a work in progress. Some days I cry because, after everything my illness has thrown at me, I never thought indifference, egoism, lack of insight and ‘me, me, me’ attitudes hurt more than my MS symptoms. I am the creator of my own destiny and I refuse to be made a victim, no matter how close, how good and how long my friendships were.
So I battle on. And I stand up taller than those who ever disbelieved me.
I had to find beauty and hope again if I wanted to prevail. I had to because my love for life is too big, and I will not give up on that. Every cloud has a silver lining, and what remains is love for family and friends that truly mean well. That is where beauty lies, and where it will remain.
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2013.