Care-Giving from a Wheel Chair Yields Perspective

Last month, my husband Ron found himself facing an even more interesting challenge than the ones he encounters every day, as a paraplegic who navigates through life from a motorized, six-wheel monstrosity known as a “power wheel chair.” His new challenge came the same day I was forced to grab one of his four-wheel walkers that had me scooting around the house from a sitting position, flying around the house backwards for the next few weeks—all because of an injury I self-diagnosed as “only a sprain.”  

After all, I'd had a similar injury on the other leg a few years back. When nothing showed on an x-ray, I'd turned to a chiropractor that time, just to speed things along. In short order, I'd been able to shed my cane.  

"Not nearly as bad as first time. Nor is being on wheels as terrible as you might think,” I say to friends, minimizing this interesting dilemma the two of us are managing to cope with fine as long as I don't try to venture out.

Getting better every day, with the initial pain gone, Ron and I are soon laughing at this new twist in our lives as we try to avoid running into one another. I still have a lot to do to take care of him. Yet, he's now having to push things around, waiting on me, or showing me how to do things to cope. Now, he can no longer park his chair wherever he wishes. He's got to make room for me and my vehicle. Oh, how frustrating it is when he doesn't remember to consider my needs! 

“Gender oppression, I tell you! Here I’m stuck, having to manually coax this much less sophisticated model into motion with my own muscle power wherever I go, while you get thru life with the ease of a joystick,” I tease. 

Then, after two weeks of no weight-bearing, I bound down the ramp from our front door one afternoon and suddenly find myself in agony again. 

"This one's a stress fracture, I suspect," the orthopedist said matter-of-fact-like, soon after I wheel into his office five weeks ago. "Quite typical for someone your age." 

How could life become suddenly so complicated? I ask, echoing my mother’s voice, frequently overheard from inside the hectic parsonage where I grew up in the 1950’s. To which my father frequently added a line borrowed from a popular TV sitcom of that day, The Life of Riley. “What a revoltin’ development this is!” Dad would declare, same as I still do today, even when facing a sudden change of events far more serious than this temporary one I choose to laugh about.”

“This isn’t the first time we’ve had to get creative,” Ron reminded me as soon as I gave him the doctor's verdict. I know immediately that he's referring to the most challenging time of our lives, three decades ago, when the two of us both lost our careers after we chose to stand up to collusion in a case involving the sexual abuse of minors and also sexual harassment of several of us who were the predator's colleagues. Of course, that was back in the pioneer days when the vast majority chose to look the other way, long before the #MeToo movement was ever thought of. 

“That’s the understatement of two centuries combined!” I reply, recalling other times in the past, when our present reality would have looked like a birthday party. 

This, too, will pass, leaving us somehow wiser for it all. Our vast experience has taught us so over decades, even as we sometimes tremble in the darkness. Without this attitude, occasionally laced with humor, it would be impossible to rejoice in the paradoxical truths that have come our way, as social activists confronting intense pain and evil we’ve discovered to be intertwined in institutions in the form of racism, gender oppression, disdain for progressive ideas we’ve stood for personally. Except for the amazingly resilient women and men who have dropped often into our lives, demonstrating the power of laughter even when surrounded constantly by dark clouds that mask the richness of universal truths, we would not have survived. 

Soon, thanks to friends, whose teen-age son insists on using crutches instead of the wheel chair recommended for him, I've got a wonderful set of wheels that even has flashing lights on the wheels!  I'm making my way around the kitchen, with Ron often having to do things for me. 

 After all, he's the one with the power that he accesses so easily with the joystick, I jokingly remind him. Except if I manage to confiscate it when Ron leaves his wheels parked somewhere. Can I ever get things done then!  Plus, I'm in awe at all I can pack around me in this little moving van that has enough power to destroy the entire house and anyone who gets in its way. 

The abuse of power is still a frequent topic of discussion for Ron and I--a topic we've each studied academically, in fact. Now, we take this illustration of the power chair vs. the manual and speak of it in light of all we're hearing on the nightly news with the horrific abuses being exposed by women, in this watershed moment. 

"You've been speeding and reversing when it's not necessary," I tell the expert driver in our household, as I experiment with different speeds. "Why don't they provide rear view mirrors for this contraption? No wonder you keep running into things!"  

My view has forever changed, extending to matters far beyond navigation around the house from this experience. Yet, at home, I see dirt and grime from the level of a four-year-old, but with the finicky expectations of a seasoned housekeeper. "How have you stood looking at all of this?" I ask Ron, as I begin tackling the nasty spots on the lower kitchen cabinets. "Or do you even see it?"

He shrugs. "Yes, I see it. Just figured you'd get to it eventually," he tells me. Glaring back, I hand him the rag after providing a demonstration for the task at hand.

Of course, as partners in advocacy, it works much the same way. I'm as likely to approach someone about moving an obstacle or barrier in a shop or office as Ron is. The heavy bathroom doors that have managed to go unnoticed by a building inspector or the lack of a lower writing surface or being forced to communicate with an invisible clergy are among our biggest pet peeves.  We're both constantly on the look-out because we know that, even if something doesn't annoy us terribly, the next person in a wheel chair may not be assertive enough to speak up. 

Gratefully, the wise counsel of my physician put me back on my feet three days ago, though I'll still rely on the chair for longer-distance navigation until I'm able to walk with ease. 

I'm not signing up for a second round in a wheel chair, believe me. Yet, this experience has not only increased my empathy. It's given me perspective, taught me what it feels like to be dependent on others. 

Above all, I've learned that I can adapt and find creative, alternate ways of accomplishing many things, same as my husband can.  As a result, a lot of things are going to change in this inter-dependent world of ours. 

Role reversals in care-giving aren't all bad. When it comes to getting healthier, for both the chronic sufferer and the care-giver, the sky can be the limit.


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For more insights on encounters with good and evil uses of power, check out Miller's latest release, Enlarging Boston's Spotlight: A Call for Courage, Integrity, and Institutional Transformation