Hard Times in Geezerville

Tim GilmerWhen I am alone, I am not truly alone. I have come to believe that there is a spiritual dimension, whether we believe that God is real or not. When things get really difficult and somehow, we emerge OK, we often look back and “see” that something or someone “happened” to us when we most needed it.

It’s easy to think this when the river is high, and all is well. But what happens when the river runs dry in a crisis? Is it better to conclude that our faith in the previous season of good fortune was not real? Or do we stick with thinking we are not alone and there will be a beneficial resolution in our coming days? If we choose the latter, it will at times seem difficult, not possible, yet we persevere. And that is where the resolution declares itself, in our choosing to persevere. It may feel like pain from muscles aching from way too much exercise, but the effort we put into keeping hope alive strengthens those perseverance muscles, which eventually strengthen our character.

When I wax philosophical like this in my writing, it makes me question my “credentials,” my right to speak as if I am some kind of wise guru. Clearly, I am not. Everything I say originates from others more learned and wiser than I. But those of us who must deal with chronic paralysis and other disabling conditions have our own brand of wisdom — hard-earned, borne of daily struggles that may not even be visible to others. We need to speak out in ways that teach others we are worthy and deserve respect.

This attitude, worldview — whatever we call it — is indispensable, especially in the midst of a health crisis. In my previous blog, I wrote of my current medical battle, my urgent trip to an ER, or any ER. After being turned away from two hospital emergency treatment centers that were already over-capacity, I was admitted to the third and operated on within a few hours. Now as I write this, after six days of continuous strong antibiotic IV doses in the hospital, I am home again with my family, having escaped being sent to a skilled nursing facility for weeks or months, and my feelings of gratefulness are welling up, like a spring of life-giving waters replenishing itself.

And so, begins another trial of forced downtime in my hospital bed with who knows how many weeks ahead of wound packing and dressing changes done by … whom? Trained wound care nurses with degrees, certificates, and years of experience? No, my daily care is now mostly in the hands of my 73-year-old wife and 37-year-old daughter, both with busy lives and limited time, yet once again, they answer the call. They know that “skilled nursing” can be an oxymoron for those of us with complicated daily situations stemming from paralysis that is poorly understood by SNF nurses who are inexperienced in SCI care, directed by doctors similarly unprepared who have never set foot in our homes or rolled an inch in our wheelchairs.

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My family caregivers are equipped with high school degrees, plentiful practical experience, and love. Both have done this before, and more often than not, they do as well as or better than home health nurses who show up for, at best, 4 hours per week. My personal care team shoulders the remaining 164 hours.

How could I possibly feel anything but grateful? 

Don’t get me wrong. Emergency doctors and nurses and home care nurses are critically needed and much appreciated. But the real everyday burden often falls on our uncompensated loved ones. Is this the best our health care system can do when those of us with significant disabilities are supposed to be protected and supported by 50 years of civil rights laws whose purpose includes the promise of equal health care?

About the Author - Tim Gilmer

Tim Gilmer graduated from UCLA in the late-1960’s, added an M.A. from the Southern Oregon University in 1977, taught writing classes in Portland for 12 years, then embarked on a writing career. After becoming an Oregon Literary Fellow, he went on to join New Mobility magazine in 2000 and edited the magazine for 18 years.

Tim Gilmer

The opinions expressed in these blogs are the author's own and do not necessarily reflect the views of the Christopher & Dana Reeve Foundation.