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.
Needs, it seems, are an important ingredient in any healthy relationship. I’ve been listening to 
“We attended a wedding this past weekend,” I say, processing aloud; ” and I had a lot of anxiety about being around other people. I was really irritated and quite short with my husband. While we were getting dressed, I asked that he help me decide on an outfit. He gave me the usual dismissive response – Wear what you feel most comfortable in – but I wouldn’t accept it. I told him: I want to wear something that will make you feel proud to be with me! I guess that is expressing a need?”
Father worked six days a week, and with the exception of Saturday, was gone from 7:30 am to 10:30 pm. Sundays were reserved for family day: usually church, visiting, and a formal dinner. He could be fun at times, but typically he was tyrannical – angry and critical – calling us idiots, useless, and expletives I won’t mention here. When Dad was home, more often than not, we ran for cover.
I wanted to be that kid, whose family rallied around when times were tough, and always ‘had my back’ (whatever that meant). Instead, I grew up in a household where attention was in short supply, and siblings were either jealous, fighting, or indifferent. Comparisons pitted us, one against the other, and the competition was on to see whose drama gleaned the greatest power. As the most “stable” offspring, I was a constant outsider.
History cannot be rewritten, but it can be re-examined.
My parent’s were not disappointed in me. In my own convoluted way, I made myself responsible for their well-being, and I translated their pain into personal guilt. What I failed to see through the lens of expectations was that we were all victims of a tragic situation, each struggling to pull through. Some of us thrived better than others.
Permanence is not a quality of harmony. Can’t understand why I should ever hope for such a thing, yet here I am disappointed again, disagreement having chipped away at momentary bliss.
We were in bed when he spoke it, and I rolled away from his words, conjuring all sorts of retorts (not spoken) in which he was the villain, and that I had been equally disgruntled by his daughter, and then; consumed by the impossibility of it – the never-ending rancour – I melted into depression.
The old way put me at the center of the family (even though I was fifth born), listening to and attempting to resolve every family issue: 
Perhaps none of us is meant to be an impenetrable force: the kind of force I aspired to in my youth.
