Distraught? Pause

Yesterday, I was ready to give up – on everything.  I was convinced that my husband’s distraction meant he didn’t love me and that our marriage was coming to an end.  I  panicked to think that we are planning to leave home and I will be cut off from family.  I convinced myself that I […]

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What Does It Take To Belong?

We roll into our new neighbourhood cautiously guided by an old-timer, who after we finally manage to maneuver into our RV site, introduces himself as Graham. “Been here since the park first opened,”  he beams and then proceeds to point to each of the other trailers and run down who’s who:  “The ones behind you […]

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Inaccessible

Spas are meant to be luxurious: relaxation sublime.   My daughter planned on it when she booked us into a top-rated facility for a morning of pampering. My daughter doesn’t have mobility issues.  It wasn’t her inner bitch that threatened to spoil the day. Should have known there’d be a problem by the absence of handicapped […]

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Horizontal Champion

Sleeping in was a sin in my father’s eyes.  Even as a teenager, no matter how late we’d been out the night before, if we weren’t up with the sun, Dad would treat us to an icy face wash. The early bird catches the worm! Laziness was not tolerated either.  If we were ever caught […]

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Time To Press Reset

Even when illness is chronic there is a tendency to look for signs and hope of healing.  It catches me every time : the false hope that I may have turned a corner. Undeniably, there is progress.  Last night I was able to bathe alone without worry of falling or passing out.  Last year, I […]

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A Bad Day

ME/CFS is a mean mistress, whose sole purpose is to keep me down.  She is a dominatrix thriving on my submission, wielding her whip with heartlessness, and when she tires of the lashes – has me wincing in pain – she tosses the whip in my direction, tauntingly daring me to defend myself, knowing full well that […]

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Inner Children Need Care Too

“Pay attention to your inner child,” my therapist advised me when I first got sick. It seems that fear causes emotional regression and any needs suppressed over the years come barreling forward in irrational outbursts.  Hard to deny that one from where I’m sitting. I’ve been dreaming about children lately – children in my care – […]

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Disability’s Rage

I am not always in possession of my own faculties and the resulting anger lashes out, mostly at my husband, whom I hope recognizes it is seldom personal. I hate myself in these moments – not all of me – just the malfunctioning parts. It happens when I overexert myself.  Systemic Exertion Intolerance Disease is the new […]

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“Are You Brother and Sister?”

“Are you guys brother and sister?”  the question came from our soon-to-be five-year-old granddaughter.  Dropped off by her mother for an overnight stay, we had a day of cousins and uncles and aunts, and of course, Grandma and Grandpa. I brushed off her comment with a:  “No, we’re married”, but the innocent observation shook me. […]

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See It From Disability’s Side

If you’ve ever wondered what living with a disability feels like, imagine this:  Judgment is your constant companion.  Family, friends, and even total strangers will suddenly feel entitled to express opinions about your condition, lack of trying, mental attitude, the latest trends in healing, and so on.  You may be berated for using a handicap […]

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