Not my face!

162974080234952360_x4ok1y8s_fSomeone once said “Babe, you may have MS, but you’re still sexy. Never forget that.”

Shortly after my diagnosis, my then-boyfriend uttered those very words. He must have seen me look at myself in a critical manner one too many times since returning home from a two-week stint in hospital, wondering if ‘MS’ really was written on my face.

Even though I don’t usually give in to superficial words like this – after all, beauty is literally a fast-moving downward spiral – and with my own alternative fashion sense, hearing this was just what I needed to hear. His words became a quick-fix mantra to pick myself up when I needed a boost. The relationship didn’t stand the test of time, but sometimes I still say those lines to myself.

Of course, I would have preferred hearing “Babe, you may have MS, but you’re sexy,” with the word “still” omitted, but you can’t be too picky. Either way, my mind responded effectively, shouting “Bada bing, bada boom!” to itself.

Bada bing, bada boom indeed.

Confidence back!

Although now reduced in effectiveness, every so often those words still ring in my ears. There are better words out there someone with a chronic illness wants to hear, but sometimes you just want to find solace wherever you can find it first. The flimsy fact that Mister Ex was the spitting image of Liev Schreiber (of Ray Donovan fame), absolutely helped also.

In a world of selfies and size zero clothing, a negative body image can weigh heavily on healthy people, never mind disabled people. Being chronically ill with a neurodegenerative illness in itself often makes you feel less desirable, ugly or non-appreciated for who you are. Newly diagnosed people with MS immediately think about possibly ending up in a wheelchair, so body image issues require a whole new level of acceptance.

While growing up, I was more like an ugly duckling who knew all too well that beauty is limited to time and space. In addition, it only runs skin deep and definitely doesn’t reveal true worth. In 2005, I was happy with my big blue eyes, clothes size and height, but I never had Top Model aspirations. But oh dear… my body surely stepped into the limelight five weeks before my definite multiple sclerosis diagnosis.

I just knew I was ill. My previous GP kept on misdiagnosing trigeminal neuralgia as “severe ear infections” for 5 months, and I had been in and out of work, not getting anywhere save from feeling more ill as time went on.

After 5 months, I needed to become proactive if I wanted to know what made me so tired I could hardly walk from the couch to the fridge, and in so much pain I wanted to die. Eventually I made a drastic move on my way to work, so I checked myself into hospital via Accidents & Emergency, bypassing my old GP and whichever department he was thinking of sending me to next. I was hell-bent on finding out what was wrong with me, and if the mountain didn’t want to come to me, I would go get that mountain myself (I do love a bit of anarchy every now and then).

After three days of tests that would put Einstein to shame, it hit me right there and then. I ogled the mirror after a  consultant, accompanied by a battalion of medical students, asked me to stick out my tongue. “With pleasure” I thought, “it’s not every day a doctor asks me to do so.” Afterwards, he asked his students “look at her face, intently look at her face.”

One of them replied “Left side.”

What?!

What did they know that I didn’t about my cheeks?

Left side, what is wrong with my left side? First my tongue, now my face.

I thought, “Don’t you dare touch my face, mister, I need to talk, I need to do lots more of it the next few years because I have big plans! Talking, yelling even!”

As soon as the army of doctors left, I ran to the bathroom to watch my face, to look for “that left side.”

The chill I felt that moment still makes me shiver today. There was a clear difference in tissue and muscle texture, my left cheek thinner, not even enough tissue to squeeze between my thumb and index finger. When I put both hands on each cheek, tears welled up because there was an absolute difference in the amount of skin, muscles and whatever that should’ve been there. Why the hell did I never seen or felt this before?!

I was sick.

My face had changed and I never even noticed. In that moment, my body image was altered.

Something was eating away the left side of my face, so I had to reclaim that lost part of my body. Suddenly the body I had been comfortable with for a very long time, took centre stage.

For the next two months, I couldn’t pass a mirror without quickly looking if the rest of my face was still there. Nine years later, my left cheek is still thinner than my right cheek, but I’m not worried anymore about the ‘squeeziness’ of my cheeks.

My then-boyfriend beat me to it with a few words that worked like magic. And every so often, those words still help me feel comfortable in my altered state.

© WVE and Ireland, MS and Me, 2011-2014. 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 WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

11 Comments

  1. I don’t have MS … at least not to my knowledge but I do seem to have just about everything else. I don’t feel attractive anymore. I barely feel female — fake breast, no nipples, covered with scars. Naked I look like … I don’t even know what to call it. Illness, surgery, missing pieces (literally and figuratively) make it hard to feel attractive much less sexy. I wish there was a cure for the side effects of illness.

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  2. socialbridge says:

    Billie, this is one of the most breath-holding posts I’ve ever read. Brilliant and I agree that words can have huge impact ~ especially those that echo positively and which were spoken with love.

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  3. Self talk seems to be the part of MS with which I have the hardest time. I played soccer for 20 years before MS. When I have days where it is hard to move or my muscles lock up, I look in the mirror and see all I no longer am. It takes a lot of discipline to look past all we no longer are to the strength of who we are. The strength was always there, but it just shone a bit differently. Thus far my key has been learning to appreciate the new light underneath the haggard face staring back at me in the mirror.

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    • Billie says:

      It’s not easy to do Geof, believe me, I know all too well how getting past thoughts like that can be a battle in itself. Like you say, focusing on it in a different way is what is best. I always say that each negative has a positive also. I made a promise to myself that, if I wanted my life to be what I wanted it to be, I needed to step up and not let things bring me down. Sure, I can sit here crying all day, every day, but that wouldn’t help anyone, including myself. In the end, I’m here to make people happy :D

      Liked by 1 person

  4. Sarah Lomas says:

    Omg I have to look at my face now! You articulated my feelings towards my own body so well. My right leg has lost muscle mass and for someone who ran and did weight training it blew me away when I first noticed it. Time, therapy and reading shared feelings helps too .

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  5. Hi Billie, you are an inspiration for other sufferers of MS. My elder brother had it for many years and he too never, ever complained to me or to mum and dad.I guess his wife took the brunt of it though and he put on a different face for us. Luckily, he did have a wonderful sense of humour and was the life and soul of any family gathering.

    You are doing the best thing by remaining as positive as you can and I applaud that. You are so right that beauty is limited to time. Good looks fade with age but when someone has a beautiful soul it’s there for all time and even outlives death in the memory of those around them. I know this because my brother had a beautiful soul. I’m sure you do too.

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    • Billie says:

      Carole, thank you so, so much for your very kind comment. I’m humbled and feel honoured that you find some inspiration here.

      I’m sorry to hear your brother had MS also, but fair play to him for putting on a brave face. Humour is so important in life and it makes the day easier to get through. I sense your brother stayed positive come what may also, and I’m glad to read he was the life and soul of any family gathering.

      Like you say, we do what we can by remaining as positive as possible. Sometimes it’s as if people expect ill people to be boring or unable to laugh every single day, or be unhappy because of our predicament. Life is simply too short to be negative.

      Again, I am truly humbled by your words and can only extend the very same to you and your brother for both being strong and staying positive. Thank you so much for following my blog. Sometimes you meet people online that can touch the very deepest of your heart, and by your comment and strength, you surely have.

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  6. Helen Lear says:

    I walk awkwardly and have a bloated face from the steroids I take for my condition. Its quite different to the person I used to see and it’s hard isn’t it?
    A very honest post, thank you.

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    • Billie says:

      Thanks Helen. Yes, it’s hard sometimes. Used to be on steroids myself but stopped taking them because my weight ballooned big time. Hope you’re keeping well otherwise? Take care!

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      • Helen Lear says:

        I’m doing well thank you, days are variable, but I’m learning to ride a bike and I’ve only been walking again for 2 and a half months so life is brilliant!
        Take care and I hope to read more from you soon.

        Like

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