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.
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 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.