WHEN BEING THERE IS WHAT COUNTS
If there's one thing worse than recuperating from major surgery, it's taking care of someone who's recuperating from major surgery. Not because you're a heartless cur but because you're helpless to alleviate the suffering.
Pain has been splashed across our consciousness in a million ways: pain as metaphor, pain as growth, pain as punishment. But the physical pain of an illness, the kind that erodes your immune system and warps your sense of future, is almost as excruciating to observe as it is to tolerate.
Effective pain management is a relatively recent phenomenon. We now know that some of the worst perpetrators of pain abuse have been surgeons, who thought their job was done after the blood dried. (Some still do.)
Worse, for too long they caused massive amounts of unnecessary suffering by undermedicating post-op patients out of fear that too much of the stuff would lead to drug addiction.
Nurses were the ones who saw firsthand the brutal effects of this disastrous approach. By the time a nurse reached a surgeon on the phone to get the dosage increased, the patient was already in agony.
Today, we know better. The cornerstone of pain management is built around the truth that you can't play catch-up with pain. You have to stay ahead of it, and doctors do so now by giving medication in doses that were inconceivable some decades ago.
I write this in part from the reporting I did on the subject in an earlier life with such internationally recognized pain specialists as Daniel Carr, then of the Massachusetts General Hospital, and Kathleen Foley of the Memorial Sloan-Kettering Cancer Center in New York.
I write this, too, because my great and good friend Barbara has had a rocky time after recent kidney surgery. She's a hurting puppy but should be fine. Yet I still find myself shocked to realize that her suffering is beyond my control.
Pain is part of a larger challenge of knowing and accepting your own limitations when taking care of someone. You can't excise pain any more than can you make nausea disappear. You can't induce sleep. Nor, for that matter, can you make someone eat if he's not hungry of drink if he's not thirsty. In fact, aside from performing household chores, rustling up grub ("What? You don't like my scrambled eggs?") and running interference on well-meaning callers, you aren't good for much except being there.
But that presence, I've been reminded lately, is large for all concerned. To sit with a sick person is both a gift and an art. Most of us are incapable of occupying a chair near someone in pain without squirming. It's not that we're out of practice. We never learned how to do it in the first place. We don't know how to do nothing well.
"The two greatest fears that sick people have, particularly those with cancer, is, first, that they'll have unnecessary suffering," said Jerome Groopman, a noted oncologist. "The second is that they'll be abandoned. So your presence, even for someone who is unaware of it, is absolutely key to eliminate that spiritual burden, that deep terror."
I recently spent time in a darkened half of a hospital room, separated from another poor soul by a curtain. A hospital room is a sort of Hippocratic holding cell, disorienting and scary.
It is no mystery why we avoid these places like the plague. Patients are in extremis and visitors are generally clueless how to behave.
I watched the day die outside the window. The glare of the hall lights intruded, as did the insistent white noise of an unanswered nurse call. Barbara was asleep, flying cockeyed on something. With time, you block out the ambient noise and locate a stillness within you, an internal rhythm of sorts. It holds until someone brings a tray of inedible food and breaks the spell. Hospitals are superb at breaking spells.
Back home, the requirements of daily life resurface. Pets need feeding, sheets need changing, food needs buying. Someone must keep track of medication.
I learned that taking care of world-class caregiver is trickier than it looks. Caregivers are lousy patients because they're used to helping everyone else and are constitutionally incapable of asking for help. So you anticipate and don't take no for an answer. You lose yourself in someone else. Most of all, though, you just be there.