Last night I heard the news that a friend of mine – who also has MS – passed away… hence the “mortality” subject line. Life can be unkind and hard, especially when young lives are taken from us much too early. I hope my friend can now rest in peace, free from daily aches and pains. Sweet dreams sweet pea…

Mortality is when a living being is susceptible to death, or is mortal. It’s when people and animals stop being around and start being a memory or just a flicker of a thought 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 took me out much too early also. I only used to talk about it with my mum because I didn’t/don’t want to scare people. But since my friend’s passing, I’ve been confronted with my own memories of it and it still scares me because I had no idea how close to my own 6 feet under I would get. Perhaps writing about it will be a catharsis: finally being able to talk about it openly and even better: finding a place for my mortality in my life.

I was under the impression that mortality only affected the old. I was and still am physically weak but I never thought that mortality was me. Anyone but me despite carrying an incurable illness in my brain. And everything else that comes with it…

For about 5 months I would see my GP and the emergency room quite regularly because nobody knew what was going on inside me. About 5-6 months before dragging myself into the emergency room once again I started feeling ill, but not the MS-kind-of-ill. It was diagnosed as a stomach bug, gallstones or just stress. In and out of emergency a few times and always sent home again, but it just kept on harassing me by gradually getting worse.

What more do I have to do to show you I am sick?

Eventually, in March 2008 I was so ill I knew that something serious was going on, so I went to hospital once again. Four days later I was rushed into an operating room for emergency surgery to take a look inside me as I told nurses that I was getting worse as time went on. Four surgery doctors tried getting a drip into my veins (they have the tendency to disappear when doctors, nurses and needles get closer), so I had two doctors at each side of me prodding and poking my arms… I fell into a slumber and when I woke up outside the operating room, I heard a nurse say “and she’s so young, never seen someone so young with this illness”

Result: Clostridium Difficile, otherwise known as C. Diff 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, no snoring of other patients during the night!” 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 morality, or rather amorality. Two people in my environment didn’t believe I had a superbug and that I was that ill, and 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 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 moral or ethical standards 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 the friends that truly mean well. That is where beauty lies, and where it will remain.

© 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.

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  1. Pingback: Ebola in Ireland? | Ireland, Multiple Sclerosis & Me

    • Billie says:

      Thank you Jackie for reading my post and thanks for your kind comment! Writing does seem to help much more than I thought it ever would and nah… life goes on doesn’t it and what seems bad one day seems much less later in life. I’m glad I learned I valuable lessons following the C. Diff and that’s what counts! :)

  2. Legend says:

    I have been battling C.Diff for 9 months now, it has been hell. I finally get over the C.Diff to have all of these neurological symptoms pop up. I feel like I am going crazy, and thankfully I will finally see a neurologist Tuesday as my doctor thinks the neurological symptoms are signs of MS. The doctors have told me all along that they feel I must have some sort of auto-immune disorder preventing my body from thwarting the C.Diff like most ‘normal/healthy’ people. First they said Chron’s, Ulcerative Colitis, or something like that, but now they think MS. There are days I feel like I’m dying from the inside… I know what you went through, and thanks for sharing for those of us looking for some ‘sanity’ while the doctors try and sort it all out! I’ve started blogging my symptoms so I will have some kind of record to take to the doctor with me.

    • Billie says:

      I hope you heal soon and that your neuro will tell you what ails you. It’s quite difficult going on when you don’t know what is going on so I hope that some day you will get the correct medication to help you out. Let me know how you get on OK. I’ll follow your blog from now on because we can all learn from each other :))

      Emergency room doctors told me at first that I had gallstones yet I hadn’t or stomach bugs and a lot more but I knew it was more than that. It indeed feels like you’re dying from the inside out, I felt like my gut was being eaten alive and I lost a lot of weight of not being able to keep my food in.

      The issue is that not everyone believes someone so young can have MRSA, or C. Diff because young people “are not supposed to have serious illnesses like this”. But add an immune illness to it and it changes everything. I was in shock when I found out about what C. Diff was… adding people to it who don’t believe you and you lose part of a reason to want to stay alive. At least that’s how I felt at the time, now that I finally talked about it so openly, I realize that real friends don’t treat you like this. On the contrary, if it were one of my friends who had this, I’d tell them to “take my hand, my arm or whatever you can grab and we’ll beat this together” instead of going around my back checking with hospital staff if what I had was real. In the end, C. Diff was eye-opening in a lot of different ways.

      I also hope you won’t have to deal with issues like this, I can only imagine what you’re going through so take care!

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