Uneven aging: Navigating disabilities

I live with a partner who became disabled in middle age, as have friends and neighbours.

Le Duc is hearing-impaired. He says this is a particularly difficult disability, because people (including me) grow frustrated easily and sometimes imply he's tuning out of a conversation on purpose. He can't tolerate loud restaurants or raucous parties. Movies must have subtitles, and theatre or concerts are out, even from the first row. Though he wears high-tech hearing aids, they only help so much.

As we age, it's likely one partner will be afflicted by either the standard-issue disabilities like impaired hearing or vision, but also less-visible problems, such as mental health issues.

One day you notice something's not the same, or there may be a gradual accumulation of events that suggest symptoms. (Sometimes the afflicted person raises the matter; that's courageous.)

When you broach the topic, the first thing you'll notice is denial. No, I can see fine, I'm just tired. I don't need a hand, the bus is lurching. My mother says I've always been forgetful. The healthier partner must take the first step of tough love: a calm observation of facts. And if the afflicted partner wonders, Where is this going? that recitation of evidence can sound like the first step to relationship breakdown.

When a couple has adult children, they can help by providing more evidence, but, and I can't stress this enough, the evidence must be coupled with the reassurance that there are supportive devices and accommodations. If not, such stark and disruptive loss is too much to bear.  For Le Duc, we knew what would help—hearing aids—and eventually he accepted them.

There are assists for all disabilities, but they rarely return full function. So, after denial comes grieving for the time when the partner didn't need anything—and both partners grieve. The grief of the afflicted partner is especially keen: the awareness that she is always going to have a pacemaker, that she needs medication or therapy (perhaps not covered by insurance), or that this might be as good as it gets, sends even the most resilient person into a spin.

In some cases, disability results from an acute illness. Rachel survived late-stage cancer, but has lingering effects from treatment. For a year after she was cleared, she felt flat and disembodied.  When people told her how lucky she was, she agreed politely but didn't share their elation. Only friends who had lived though similar ordeals knew that getting your life back does not mean you get the same life back.

What do you do, when you have a partner who was hale and is now halt, who was vital and is now brought low? What if you were cheerfully planning adventures that must now be postponed? It's facile to say, Well, you deal with it.

The able partner is now in a metaphoric sack race, tied to the disabled partner, becoming his or her ears, eyes or limbs, as best we can.

When disability happens after years together, we enter the situation handicapped ourselves, lulled by decades of a beloved bounding out of bed, portaging a canoe, or singing all twenty verses of an obscure English folk ballad. Now we must redistribute daily chores, make sure assistance is discreetly available, and create a social life that evokes enjoyment rather than frustration. We decline some invitations, and participate with enthusiasm in those that suit Le Duc's needs; I sometimes go alone.

Parents of disabled children have immeasurable wisdom to offer; they've been at it longer, figuring out how to make the best life possible for the child they love. And if they have any energy left, they are busy advocating for better care, more resources, for research to cure these conditions.

These parents say one thing repeatedly: give the person credit for managing rather than remembering the way things were. The disabled partner is bound to be blue sometimes, so the other has to stay reasonably centred herself. As the mother of a 37 year old quadraplegic told me recently, "I tell her, the best 'assistive device' she has is between her ears." 

Her remark reminded me of Betty, a work colleague who got around in a wheelchair. A group of girlfriends would take her drinking after work on Fridays; we found a pub with good, wide doors on the bathroom stalls. One evening, toward the end of our enthusiastic Happy Hour par-tay, we hit the loo before heading out. We got her jeans down and were easing her onto the toilet, but dropped her at the crucial moment. Betty whooped as we wiped our shoes. "You guys", she said, "are in way worse shape than I am!"

The door swung open and a strange woman looked at us, helpless with laughter, and said, "Having fun, ladies?"

We were.