New Page 1

THE LABEL IS ONLY PART
OF WHO WE ARE
Journal of Healing – June 28, 2006

By Mary Koch

I smiled and greeted an acquaintance as our paths crossed by the post office last week. She gave me a puzzled look, warily returned my smile and hurried on her way.

She didn’t recognize me, I realized. It was odd; usually this woman goes out of her way to talk with my husband and me. Later it dawned on me why she didn’t know who I was. I’d been alone. She recognizes me only when I’m pushing John’s wheelchair.

I wasn’t insulted, but it made me wonder: Has my husband’s wheelchair become my most recognizable feature?

Last night I had a jumbled dream about John, his wheelchairs and various other pieces of equipment he uses. I’m not adept at dream interpretation, but it may have been addressing my mixed feelings about adaptive equipment. I’m eternally grateful for all of it, but there’s always that deeper sadness because we need it.

Wheelchairs are like labels. They can be useful, but they do not define us. Labels like “disabled,” “caregiver,” or “elderly,” may describe a facet of our character or life, but they cannot capture the whole of us.

* * *

SOME TIME ago it finally dawned on me that caregiving is something I do; it is not who I am. That realization lifted an enormous burden. I hadn’t been able to see beyond the boundaries of caregiving, and I’d been buying into all the dismal statistics.

Compared to the general population, caregivers are more likely to have health issues of their own, less likely to have medical insurance, more likely to have financial problems, and less likely to enjoy a normal lifespan. We have been studied, it seems, to death.

Last week Reuters Health reported on a study that warned caregivers’ teeth may be at risk. Caregivers have four times the normal plaque levels and more than double the risk of gingivitis. The researchers concluded that caregiving is stressful, and people under stress don’t take good care of their teeth. As I was reading the article, I ran my tongue over my freshly polished teeth, relieved that I’d visited the dentist the week before.

When you hear the word “caregiver,” often the next word you hear is “burnout.” Suzanne Mintz, co-founder and president of the National Family Caregivers Association, wrote in the spring issue of the NFCA newsletter:

“I have very little patience these days. I anger quickly, and as I tip my husband Steven forward in his wheelchair to help him get into a more comfortable position, I find myself shoving more than tipping . . . “ She was describing burnout and went on to explain how she handled it.

A Seattle Times columnist writing about a gathering of caregivers began by quoting one of them:

“’I want to run away every day,’ the woman said without shame. Everyone in the pews understood. For they are caregivers too . . .”

* * *

ALL OF THESE are very real problems that need to be addressed by family members, neighbors and friends, and especially by changing public policies.

More important, we caregivers – and that’s about 19 percent of the total adult population – cannot afford to define ourselves by the statistics. Just because we’re more likely to have problems doesn’t mean it’s inevitable, especially when we’re willing to ask for help.

Just think about it: Nineteen percent of our population is so motivated to care for loved ones, they will do so at great personal loss. That’s a heap of care.

Caregivers can be defined, not by a label, but by a love so broad and deep, it is beyond what any statistic can measure.

Return to Home Page