Better Is A Relative Expression

“How are you?” my friend asked me the other morning – an innocuous enough question, if the recipient is not suffering from chronic illness. Apart from the odd text here and there, I hadn’t talked to this friend for months, so I answered a pat: “Better.” I had really called her because I knew she […]

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Lessons From Ballroom Dancing

Early on in our relationship, Ric and I signed up for ballroom dancing classes. It was a small class for beginners, so we thought it might be a good fit; both of us loved to dance. “I’m not very good at letting someone else take the lead,”  I confessed on the first night. “In dancing, […]

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Cars and Faith

Assuming my faculties have regained some semblance of functioning, I will drive again.  I don’t anticipate the first run will be without incidence – traffic is known to snarl, and accidents are a regular occurrence – but I have faith in my ability to respond appropriately. I’m reminded of my first car and that one […]

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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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Wide Turns Ahead

When illness struck our household it knocked over our bucket list, spilling much of the content into the drain.  We were like bystanders at a train wreck: watching our lives spiral out of control, desperately trying to sift through the rubble to find signs of survival. Depression, anger, and grief were just some of the […]

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Out, Damn Guilt, Out

“You’re the only help I have right now, Mom!  I just feel like I’m not a priority for you.” “When you spend all your energy on the kids, I feel as if there is never any left over for me.  I just get the dregs.” “It would be really nice if you could spend some […]

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In the Game of Life, I’m a Fumbler

I think there is something wrong with my internal compass.  Seriously. It’s like every time I set out to do something, I end up in a totally different direction.  Is it just me? When I was twenty-one, for example, I bought a one-way ticket to England where I planned to live, work, and study Shakespearean […]

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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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An Argument for Wholistic Healthcare

A week after my husband completed thirty-five rounds of radiation for Stage III Prostate cancer, and a year to the date that I learned surgery to remove cancerous tissues from my breast was successful, Ric fell down a flight of steps rupturing his quad tendon.  Ten weeks after surgery, he would fall again, causing further […]

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Measured by Costco

Living with ME/CFS is often a matter of trial and error – the line between what the body is capable of and overexertion is never quite definable, except in the aftermath. Yesterday, I accompanied my daughter to Costco, which was teeming with cars and people.  We found a parking spot close to the entrance, and […]

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