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The Truth

Reprinted from PN/Paraplegia News September 2014

I’ve discovered the truth: Everyone ages.

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Twenty years ago I took a job as a research writer at a major spinal-cord injury (SCI) rehab center.

My job was to translate research on SCI and aging into language accessible and understandable to the average consumer. At the time, I was 48 and nearly six years into my adventure on wheels.

I spent my days pouring over medical journal articles and raw research findings, focusing on the multitude of maladies likely to befall and bedevil aging wheelers: osteoporosis, bladder cancer, respiratory failure, chronic skin breakdowns, aching shoulders and others.

When my eyes glazed over or my head began swimming, I’d seek out physical therapists, nurses or shrinks to quiz about what these afflictions might look like in everyday life.

When I needed a dose of genuine reality I would call wheelers who were my age, but had already spent decades disabled.

Knowing Too Much

I watched and witnessed how research findings played out in their lives as their level of function declined and stamina waned. I shuddered as I witnessed those with SCI relinquishing manual chairs for power, undergoing rotator cuff surgery or yet another skin flap.

Several were forced to hire regular attendant care. Less than three weeks after writing a pamphlet on bladder cancer, I armchair-diagnosed a friend who had been my first SCI mentor. Within a year, I knew far more than I needed to, certainly too much for my own good or peace of mind.

Back then, I bristled whenever an able-bodied health care professional tossed out the old adage “everybody ages.”

How dare they trivialize the terminally unique experience of SCI with those of the rest of humanity or imply that the average able-bodied person’s aging experience might, in many ways, be similar to mine or my brothers’ and sisters’ of the wheel.

Over time, that indignation got weaker. When grant funding to study SCI and aging disappeared, my job did as well and with it went the daily bombardment of bad news.

Quality of Life

As I got deeper into life on wheels and more comfortable with it, I began to focus more on possibilities rather than potential pitfalls.

I got back into camping, rafting and gardening. I bought a handcycle and rode regularly. I did contract and freelance writing, scored a grant, traveled and wrote a book.

And through it all I watched friends and family, both able and disabled, age and die. Some did so with quiet dignity. Others not so much. Some went down with a bang, others with a whimper.

Some clung to life by their fingernails, refusing to accept the inevitability of this mortal coil, grasping for the possibility of hope when there was none. None of it was very pretty. All of it was quite instructive.

I still smile when I think of a phone call from Tom two weeks before his death asking me for the name of a vendor who took wheelers skydiving.

I cringe at the thought of David imploring his doctor for some clinical trial to treat the cancer that had destroyed his esophagus, and made a feeding tube, hospice and palliative care necessities.

And I will always remember Barry telling me several days before passing, “There’s just no quality of life left.”

The Tires are Bald

Seven years ago, I lost a sister to cancer.

She was as old as I am now. Her plot at the cemetery is up a short rise from the road and it being February in northern Ohio, the day was cold and a bit snowy.

As I began wheeling up the rise I felt someone pushing me. It was my brother, who had come from New York and was hobbled at the time by an extremely cranky back. I leaned back and told him he needed to take care of his back. He leaned forward and sheepishly said, “I need something to hold onto.”

Since then I’ve lost another sister and several more friends, both able and disabled. I look at my friends and see them moving seemingly in slow motion.

My remaining two sisters, my brother, a brother-and sister-in-law were here for a few days last month for a family reunion. In years past, these events were filled with art fairs, garden tours, gallery hopping, sporting events and more.

This year, we spent an inordinate amount of time on the patio, simply visiting and relaxing. The tires are bald and the tanks are close to empty. I bristle no more.

I’ve discovered the truth: Everyone ages.

 

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