I have been married for forty-five years to the same woman, the last sixteen as a T-10/12 paralytic. I just got back from the hospital a few days back, another seven days of life wasted because of cellulitis in my left leg. It’s not the first time I spent New Year’s Eve in a hospital bed and not the first time my wife Ann spent New Year’s Eve alone. You can file this irksome but non- life-threatening episode under the title, “Drip-Drip Costs of Paralysis.”
The greatest damage may come from these drips, not the big, scary scrapes with death or further debilitation. Personally, in the last sixteen years I have had precious few brushes with brute mortality. Only one, really – a pulmonary embolism many years back which my cardiologist eloquently described as “one or two clots from eating it.” My “battle with paralysis” is mostly small skirmishes -- wounds, fevers, chills, weakness, exhaustion, infections, operations for infections -- the cycles of periodic illness most of us paralytics endure.
What doesn’t kill you will make you stronger – this is poppycock. What doesn’t kill you doesn’t kill you – that’s all.
So, home from this last hospital stay, I said something both stupid and revealing to my wife. I insinuated in passing that because I was in the hospital and out of her hair, she must have had a lot more free time to herself. She was instantly insulted. I had struck a deep nerve. At first I didn’t get it – “What did I say?” – until I realized that I had just dismissed the drip-drip reality of her own existence. Trips back and forth to the hospital. Covering every base in my absence. And, most importantly, the relentless worry about what could happen next and feeling helpless to prevent it.
What a self-centered idiot, I thought. Can someone like me get so caught up in his own petty pains and discomforts that he has no sense of how his ever-precarious state wears on others? It has less to do with “Please get this” and “Please help me with that” than with the slow, often subliminal emotional wear and tear of being around someone living on the edge of health.
I know a lot has been written about caregivers and how their own needs and frustrations get lost in the throes of someone else’s chronic condition. Aware of this tendency to think that me and my problems were the center of everyone else’s universe, I began the habitual practice, within days of being paralyzed, of saying “thank you” to any slight gesture on anyone’s part to lend me aid and comfort. I’ve never wanted even the most pedestrian act done for my benefit – like holding an elevator door or my wife rearranging my legs in the middle of the night to avoid a pressure sore – to go unnoticed. The only thing worse than a grumpy crip is an ungrateful grumpy crip.
The “thank you’s” now come out of me like one of those wretched street urchins in a Dickens’ novel. “Oh, thank you, good sire, for your kindness toward a lowly orphan like me, can I have the pleasure of licking the dirt off the boot of a fine gen’l’m’n like yourself, guv’nor…”
But the profuse thank-you’s aren’t enough for the people around you who care most and do a thousand tasks a day on your behalf. They don’t want to hear another knee-jerk “thanks.” They probably want to be acknowledged as someone other than a giver of care, like, you know, being a receiver of care, too. Wrench yourself out of the self-preoccupation that goes with almost disability – often taking the form of withdrawing inside yourself – and see how much care you can hand out. Start with doing every damn thing you can without asking for help. Count the times in a given day when you do ask for help – from a glass of water to the yogurt on the high shelf at the store – and reduce that count by half. Go through a day when you don’t ask anyone for any help of any kind. I know that everyone can’t do this, but it’s something to shoot for. Liberation from your own neediness.
Soon after I insulted my wife like that, we decided she should take a winter trip to Wisconsin to ski, skate, and see old friends alone. The pat explanation for this was I was still a little wobbly from my last hospital stay to travel. The real explanation is that she needed a vacation from me. Hell, I need a vacation from me. At least one of us gets a break. And I get to watch a lot of “Sports Center”. Not a bad deal, right, guv’nor?
© 2013 Allen Rucker |
Purchase Allen's book:
The Best Seat in the House:
How I Woke Up One Tuesday and Was Paralyzed for Life