Frankenstein legs, I call them, these long, slender appendages once a treasured asset, now stiff and unpredictable.
Hunchbacked is my stance thanks to weakened back muscles.
Cruella de Vil has nothing on me, my formerly auburn waves salt and pepper with a shock of white at the front.
And when I speak there is hesitation and frustration as the words combat confusion and fog to find expression.
I think back to a time, post divorce, when I was fit and thin and full of energy. I remember how men held doors open for me, and women smiled easily. I looked and felt like I could do anything, and life was limitless.
Today, having forgotten to bring along my walker, I stumbled through the mall, relying on rails and walls for support. People moved out of my way in large, sweeping arcs, disdain on their faces. Did they think I was drunk? Crazed, perhaps? I tried to smile through my discomfort, no doubt more grimace than welcome. I’ve become a freak.
“I hate to go out in public,” my friend who is battling cancer told me yesterday. “I am afraid of what people will say to me.”
It is obvious that she is unwell – her head wrapped in a scarf to cover hair loss, her body emaciated from brutal treatments and accompanying nausea. My illness is not that apparent – invisible they call it. Some even think it’s ‘made up’, although a recent news report indicates that over 1/2 a million people in Canada have been diagnosed with ME/CFS. Some days, I even look normal. No one would guess.
Everything changed for me in 2014. Almost overnight, I lost my ability to work and care for my home. Vitality gone, each day became a challenge just to eat and dress myself. Some days the most I could manage was brushing my teeth. Two years I spent primarily in bed. Trips to the doctor would wipe me out for weeks.
Slowly, imperceptibly, I improved. I could sit up longer. I could tolerate t.v. Visits from friends didn’t tire me as much. I started to go out. Now that we are living in smaller quarters, I can do a bit of housework, and some days, even cook. Today I went to the mall for the first time in years.
One might argue that I should be proud of myself, that I have made progress and I’m doing well, but for some reason, the reality of my situation was less horrific when I was sicker. I am by no means cured, but I am better, and it seems the more that I can do, the more I am aware of what I can’t do and the vastness between me and the hale seems even greater – if that makes any sense.
I caught my image in a mirror today and what I saw shocked me – a monster was looking back.
Yesterday, I wrote about needs and relationship, and mentioned that my therapist suggests my greatest need is for others to see my awesomeness and not my disease. I feel that now more than ever. I need to be able to see myself as more than ME, and it will require the help of others.
If you know someone who is suffering, from visible or invisible illness, please remind them of their awesomeness. Do it for me. Help us feel human again.
Writer, avid reader, former educator, and proud grandmother, currently experiencing life through the lens of ME/CFS. Words are, and always have been, a lifeline. Some of the best adventures, I'm discovering, take place in the imagination.