Life can be unkind and hard when young lives are taken from us much too early.
A few years ago, three friends of mine passed away, each within a few weeks or months of each other.
All three had MS. All three had additional medical difficulties.
All three were much too young.
There is now uneasiness among our group of friends whether MS should be labelled as a terminal illness or not. Even though we never assign such finality to the term ‘chronic’, the media often does.
As an autoimmune illness, multiple sclerosis exposes your fragility because of an impaired immune system, as the body attacks itself. Infections of any kind have to be avoided as they can trigger relapses and lead to more worrying times.
Sadly, that was how my worst secondary illness started, and how I suddenly was too close for comfort.
I was too near my funeral.
It scared me in more ways than you can imagine.
What is mortality to me?
Mortality is when living creatures stop being around and start being a long, painful memory or just a flicker of a thought in the back of your mind.
We all deal with death at some point in our lives, and I felt I had experienced more than enough of coffins and graveyards in my time. I was quickly reminded of how easy it gets to arrive on the eternal hunting fields, however.
In between November 2007 and March 2008, I was on a path I desperately wanted to avoid after gradually deteriorating from an as yet to be named contagion.
Being confronted with my memories of slipping away is something I have been trying to avoid for years. Eventually, writing about it was a catharsis, as I finally found the strength to face up to how quickly and so out of the blue life, life can be taken away.
The odd time its emotions still bang into my conscious mind though, because it had such a significant impact on my life.
Nevertheless, with my 30ish daily pills and daily injection, I try to maintain a reasonably good handle on my illness by using all sorts of tricks and ways of fighting off infections. But if or when Clostridium Difficile enters your system, you’re at the mercy of its violence.
I was under the impression that mortality only affected the old.
I was and still am physically weak, but I never thought that death was ‘me’.
Anyone but me.
For about four to five months, I saw my GP and the emergency room quite regularly because nobody knew what was going on inside me. It went from gallstones to perhaps a return of my endometriosis, and from a lousy ulcer to having a liver issue.
In fact, it was none of these things.
Around zero hours, I started having excruciating pain in my abdomen and called work to say I would not be going back – again.
Whatever was brewing inside me, it kept on growing. It had purged anything fluid out of my body and I was unable to eat. I felt run down all the time, my thoughts fought to stay positive, and I tried to keep on working.
In between being absent because of my severe MS fatigue, agonising facial and eye pain, and abdominal pain, planned events all went down the drain.
It was the year my brother -my only sibling- passed away. The gut-wrenching pain prevented me from seeing my niece and nephew that Christmas, and there was absolutely nothing I could do about it.
Eventually, the abdominal pain became so violent that sitting down had turned impossible. Something serious was going on.
Once again, I was admitted to hospital.
At first, doctors could not find what was wrong. It went from bad to worse, and from worse to not being able to speak up anymore.
A few days later, however, I was rushed into an operating room for emergency surgery to see what was ravaging my abdomen.
Four doctors tried getting a drip into my veins. When I woke up in recovery, one of the nurses pointed to my age, as I was “so young for an illness like this.”
The head of surgery walked in and told me I was quite ill, and since C. Diff
I had no clue what C. Diff was, so a quick Google search shocked me when I read: “Hospital-acquired superbug – more harmful than MRSA; elderly people and those with impaired immune systems…”
I was indeed much too young to have been this violently ill; in fact, why did I even have this at all? The clue “impaired immune system” said everything. I received aggressive treatment in the form of bags of intravenous antibiotics (Metronidazole) a few times each day.
When I was finally allowed to return home and back to work three weeks later, I felt alive and mentally present. Having looked at my graveside, I suddenly knew what life was all about.
I seemed so much more aware of life around me as if it was a brand new lease on life.
I felt alive.
In fact, I was alive.
The superbug that had been staring into my eyes for months seemed long gone. In its wake, it left me wondering. I went through an abyss, one that could resemble Dante’s nine circles of hell. That bottom of that abyss had been the morning before the rush into surgery.
My mum, obviously worried, called asking why I hadn’t been in touch yet. I told her nurses were looking after me during our phone call, and that I’d ring her back later.
But, I didn’t call her during the next 8 hours as I couldn’t face dealing with anyone anymore. I was too ill. And too far gone with absolutely no energy left at all.
Only later I realised that that specific phone call could have been the last time I might have talked to my mum. I had no strength left to speak, though, because I could not keep food in and the pain of the superbug was killing me.
The abyss was seeing myself slip, 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 one year. Losing my brother was hard enough.
I had no other choice; if only I could stay alive.
My survival system worked well so I survived, and with a zest for life. I now have to stick to a rigid care plan. Because new contamination with C-diff is possible, and therefore the risk of death. It’s a small price to pay if I can stay alive and superbug-free.
I am what I create, so I fight. And I stand up taller than ever before.
Every cloud has a silver lining, and what remains is love for family and friends that genuinely mean well. That is where beauty lies, and where it will continue.
Having stood halfway my own six feet under, it’s not where I belong anytime soon.
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2012. 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 Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.