20.3.09

Reflections on Mary Alice's Situation

Mary is doing well—now part-way into her second 24-hours of antibiotics. She eats, sleeps, dirties diapers, spits up. Everything is normal. Everything—except for the wires strung up to her chest to measure heart and respiration, and the IV in one foot, and the red diode on her other foot that registers her blood-oxygen levels. It doesn’t take long—a few hours really—to completely lose track of time and any external reality. The small room—full, with Shannon and I, Mary and her bed, a couch, a chair, a small shelve, and the monitoring station—quickly becomes a reality unto itself.

For a moment, I glimpse the lives of people cornered by debilitating or chronic conditions. A man can be 36 or 96—it doesn’t matter. Close him off from external stimuli, from any sense of whether it’s a cool or hot day, whether there is sun or rain, wind or calm; from news as to the financial crisis, the wars in Iraq or Afghanistan; from family, from friends, from the common duties of laundry and dishes, uncut grass and cars in need of inspection renewal—cut him off from these and suddenly life slows down to a crawl. I find myself reacting only to the buzz of this monitor or the alarm on that one. Instead of staring at television, I watch the sometimes-regular, sometimes-irregular waves of EKG, respiration, and blood-oxidation.

What do you talk about in such conditions? Visitors usually want the same information—how is Mary. The reports grow more similar, more monotone—and eventually become little more than a summary recounting hard facts: the fever broke no report from the blood culture still waiting to see what the urinalyses shows nothepetitusormeningitisanotherbloodsampletomorrowtotestCRP. And with the report completed—there is nothing else to ask, to say. Maybe a prayer and an offer for help. Then the momentary stimulation of something external is gone and the monitors become the center of attention. This is the self-centering reality of older men and women in hospice or long-term care. In such an emptiness of time and space, only the past becomes real—only the past remains a place to fly away to. I know why old people long for the past. I understand that, and grow thankful for the present.

Then there is the all-consuming aspects of the treatment. Playing with Zeke last night, I found myself completely disengaged from what we were doing. I began thinking about Mary, about the IV and the antibiotics, and her absence, and her monitor. I let myself pretend to be present with Zeke when, in reality, I wasn't. I understand now some little bit of how hard it is to fight the consumption—to continue to engage other children or a spouse, friends, or chores; when your mind constantly defaults back to the small room—that self-imposed prison of the soul. I understand that, and am thankful for places outside the hospital.

Then there is the gut-wrenching fear of realizing—after all the fighting to put it out of your mind—that you forgot. I’m not just talking about for a moment, a moment when I can concentrate without thinking about Mary at the hospital. No! I mean completely forgetting. To find myself cleaning out the garage and thinking about supper, stopping to break up a disagreement between the boys, and wonder where Shannon is—wonder, like I didn’t know she was at the hospital with my daughter. It hits me. I can’t breathe for a moment. I forgot. I have a daughter.

I understand now why so many of the pods—that’s what they call the individual rooms that the NICU babies are in—are vacant of parents or grandparents. In some rooms, people are in and out. But in one of the rooms, I haven’t seen a single visitor. Only the nurses care for the child, and the volunteer “cuddler” (e.g. retired people who walk around waiting to hear a cry, so they can rush in and offer comfort). We’ve been here, what, 36 hours—while some of these babies have been months in transition from very serious conditions to these more stable situations. After 36 hours, I’m tired of the hospital, and scrubs, and new nurses introducing themselves to us every 8 hours. What must it be like after a week? A month?

Maybe after a month, you are used to being self-centered, on the one hand, and all consumed, on the other, and forgetful, on the third. No—none of these babies have three hands. But some can’t breathe without “forced air.” Others need perpetual IV drips. Others have their eyes still covered, and are under a heating lamp. And this is in the south wing—the “stable wing.” In the north wing, where they first admitted Mary, the babies lie as close together as the various machines and bulk of the incubators will allow. Their conditions are much worse. Some will be delivered from there and move here, and from here go on to a full and healthy life. But there are others—God knows—that will not. I understand that, and I'm thankful for the grace of healthy children.

I’m thankful—that Mary is responding to the medicine. Thankful that, by all accounts, she should be coming home next Tuesday. I’m thankful that she isn’t more serious. But I’m also thankful for these tastes—of what life becomes like for parents and spouses and individuals who are stuck in these perpetual care situations. I’m thankful to see, for a moment, the world through their eyes. This is not the way life is supposed to be. There is nothing normal in these situations.

I would not have chosen this, but I have sipped the sorrow that must be the perpetual drink for so many people in this life. And for that too, God, I am thankful.

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