Beware of the thief!

In between trying to set up a new laptop today and resting enough before another batch of daily tasks comes my way, I came across an email about MS and the question what MS has stolen from us.

In her blog post, Nicole Lemelle says “Multiple Sclerosis robs us of our outside roles and independence. Which most times amounts to our identities”.

So where do I begin? Do I even want to answer this?  Will it lead to feelings I thought half forgotten?

While I know a lot of those questions and feelings are just sawdust in my head, just like Nicole, I often feel stigmatized also, as if somehow people know that my brain is ill just by looking at me. I see eyes staring deep in my soul, eyes telling me that I refused to listen to my own body when it was screaming for respite, unable to go on another ten steps. As if I am to blame for being diagnosed with MS. Guilt is nearly always present in some form or another, even when I cannot begin to understand where it all went wrong.

“Whatever condition we are in, we must always do what we want to do, and if
we want to go on a journey, then we must do so and not worry about
our condition, even if it’s the worst possible condition, because,
if it is, we’re finished anyway, whether we go on the journey or not,
and it’s better to die having made the journey
we’re been longing for than to be stifled by our longing.”
  Thomas Bernhard, Concrete

True, I do often have dark rings of fatigue resting under my eyes, but I did not ask them to be there. Because of those black rings, I am also the spitting image of my grandfather, and I sometimes resemble a Halloween caricature. In fact, I have been told I resemble a zombie by children in my neighbourhood. Being stared at should feel natural at this stage, yet it still throws me. My idea of ‘being normal’ has therefore been robbed, and I can hardly remember what ‘being normal’ feels like.

Eight and a half years after diagnosis, and nearly 9 years to the day of first experiencing severe symptoms, I still have the same aches and pains, still adding hardship to my life. They now vary in strength due to medical relief, but they always serve as a reminder that, despite the pain, that I cannot and will not leave the house looking so ill others would suggest immediate hospitalisation. Being proud definitely runs in the family.

Not always though is pride a thing to cheer about in the eyes of others. It is something close friends and family members have tried to take away from me. I lost credibility with those I considered friends for life, because it was their belief that I could not possibly be that ill when I refused to go outside dressed in track suits and runners and instead felt like dressing up (minus the high heels and make up, but business style all the way).

Being robbed of credibility hurts. And perhaps it always will.

“My illness has taught me something about the nature of humanity,
love, brotherhood and relationships that I never understood,
and probably never would have. So, from that standpoint,
there is some truth and good in everything.”

Lee Atwater

Many times over I had to say “Want to exchange bodies for a few weeks so you can feel, sense, despair, hope, fight and be in absolute distress from chronic pain, severe fatigue and whatnot?”

Many times over, I received an answer in the form of shrugged shoulders and a change in subjects. Suddenly people thought it was best not to step too cozily in my shoes anymore and in fact, to just not say how well I looked and that surely I was getting better.

Getting better… is there such a thing in a degenerative, progressive illness like multiple sclerosis? No. There is only stagnation, remission. No getting better. No brain lesions disappearing from the newest quack vitamin supposed to ‘cure’ MS. In that regard, MS has robbed me from daring to look any further than tomorrow and the day after that.

MS is indeed an identity thief, one that slowly steals the best parts of your life. It is up to yourself to replace those bits with equal parts, interests, faculties and if remotely possible, to add a totally new attitude towards your illness. MS may rob you of your dignity, future, people and your joy for life, but you can never let it destroy your pride.

As time goes on, I have come to regard having MS as living an adventurous life. Every day has a different reason for starting, every night another chance to say that I did something I did not set out to do that morning. I may have forgotten what feeling healthy or normal really feels like, but my body is now the cornerstone of new, better journeys.

© 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.

7 Comments

  1. mickcgorman says:

    I tried to describe how I am not me anymore in a blog post a few months ago! It is hard to put into words but the loss of self is very real. It also gets on my last nerve when people keep telling me how well I look or tell me about the vitamin that their friend or sister or granny takes that will cure MS!
    I am planning on claiming my life back soon, I just need my wife to return from America because I am scared to go, very far alone. :-D

    Like

  2. “MS is indeed an identity thief, one that slowly steals the best parts of your life.” A few years ago on a messageboard far far away, I saw somebody point out the truth about MS, or at least my MS. MS has forced me to stop doing somethings I once loved. Twenty years of soccer are but a distant memory. Mowing the lawn in the summer as a way to just get away from the world for a bit is no longer remotely enjoyable. Going through the day confident there will be no tracks in my underwear is just a memory too. Many things are but a memory of how I once defined myself when I looked in the mirror. Maybe MS will strip me of all the roles I once played. What will be left? I will, pure and unadorned by all the roles of “doing” I once played. I will still be there, sometimes with humor, sometimes with scorn, but hopefully most often with love for all those whom I hold dear to me.

    Which is the real me? The one who works, drives here and there and everywhere, studies what I can find, helps raise medically fragile kids, and writes as time permits is no more “me” than what could be left after MS has cleaned my mental house scouring “me” of all the active roles I once played.

    Like

    • Billie says:

      Thank you for posting such an honest reply. I truly value it when people open up about their feelings about life with MS.

      Never an easy day, always facing up to new challenges and having to adjust to yourself day after day… Like you say, some days it will be with humour, others with scorn. The most important thing though is that you face each day as it comes, that you don’t give up and that you enjoy the love of your family and your love for them. What more can we all hope for if it wasn’t for that?

      Like

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