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Illness is Loss: Encouragement Needed

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.

th-7I 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.

th-5Everything 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.

th-6Yesterday, 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.

 

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Categories: Chronic Illnes disability ME/CFS nonfiction

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V.J. Knutson

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.

11 replies

  1. You are indeed awesome. I love the way you keep your mind fed and are devoted to sharing your life even with limitiations. I’ve been using the Dynamic Neural Retraining System to calm my limbic system and have tons more energy! Last week I took a day trip, which I haven’t been able to do in 18 years. Please, please, please check out the results Annie Hopper, a fellow-Canadian, is getting for people like us (www.retrainingthebrain.com). There are additional testimonials on YouTube. I believe vibrant health is possible for both of us.

    Liked by 1 person

  2. Oops; hit enter too soon 😊 Anyway, either way, I really really hope sunnier skies are headed your way soon. People are jerks. They see what they want to see. They make assumptions because of their own flaws; their flaws are more insidious; theirs are ones of character. Their disdain is a reflection of themselves–not you. You are a beautiful soul in a body that won’t cooperate; they are tarnished and broken spirits who have been fortunate enough to have a shell that works…for now. Karma, the Golden Rule, nature, etc…all have a way of balancing the scales 💞💞💞

    Liked by 1 person

      1. Absolutely, dear one! It’s all perspective and yep, their junk is theirs; they don’t have a right to make it yours. It is indeed hard to remember some days. Some days are just hard in themselves 💐💐. I hope yours are better 🍀🌷

        Liked by 1 person

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