Wilderness Interface Zone

This is the first installment of a three-part series.  It’s about experiences my family and I had on and around Earth Day two months ago.  Sorry it’s so late–writing it took a while.  Readers be warned: not only do the posts run long but they get hot under the collar as I tell stories about events–some recent, some recently recalled to mind–that affected me deeply.  I hope readers can endure while I get some things off my chest.  But if you’d rather go visit a cheerier blog today and for the next few days, I won’t hold it against you.

Many readers know I have a severely disabled daughter.  A virus crossed the placenta when I was pregnant with her and destroyed about a third of her brain. Doctors said it found her brain stem especially cozy digs.  Like bad renters, when the virus particles moved out, they left behind a trashed interior space and my daughter at extreme risk.  In a last guffaw, fate—or destiny—pricked me into labor on the evening of April 21.  She was born in the early morning hours of Earth Day, 1992.

This past Earth Day “M” turned eighteen.  She receives Social Security benefits, so her eighteenth birthday triggered an intense round of filling out forms with the same information we’ve provided every year.  This year Social Security required a doctor’s say-so that her degree of disability still rendered her incapable of gainful employment.  The regional SS headquarters, located in Durango, Colorado, automatically scheduled an appointment at a doctor’s office in Grand Junction, Colorado, a five-hour round trip.  My husband Mark negotiated, winning permission to take her to a local doctor here in SE Utah on the day before her Earth Day birthday.  All that was needed was a doctor’s (re)confirmation of M’s status as permanently disabled, a conclusion easily reached upon the slightest inspection of her frail person, distinguished by severe microcephaly accompanied by stunted growth, scoliosis, bouts of clonus (the rapid contraction and release of muscles that characterizes cerebral palsy), and other obvious problems arising from a “severe insult to the brain.”

Taking M anywhere in the car poses challenges, so on Monday we began preparing for the Wednesday appointment. We bathed her—always a difficult project because of her cerebral palsy.  We collected the necessary paraphernalia.  We planned and mentally braced ourselves for the six-mile drive to the clinic.  When the time for the appointment arrived, I asked M if she wanted to go for a ride in the car.  She shrieked in delight.  Her body went rigid with excitement, triggering a round of clonus.

Mark carried her to the car.  With much awkward shifting and rearranging we buckled her into the car seat.  I climbed in back with her to help keep her calm.  When the car moved she startled repeatedly and went rigid, splaying her arms as if she felt she were falling.  I laid my arm across her chest. “It’s okay, I’ve got you,” I said.  She relaxed a bit and smiled.

At the doctor’s office, we were led into a tiny exam room that barely fit, Mark carrying M.  I noticed the arm M pressed up against Mark’s chest turning blue from its circulation being cut off.  “Let me hold her,” I said. “Her arm’s turning purple.”  Mark handed her to me and the nurse helped me settle myself into a chair.

The doctor entered and began asking questions.  At the sound of his voice, M, already anxious, went rigid, setting off several powerful waves of clonus.  Under those conditions she becomes stronger than I am.  I was forced to stand up.  Despite her frailty and small size I could barely hold her.  Could she speak, the doctor asked, could we communicate with her, so on and so forth.  Was she on a feeding tube?

“No,” I said. “I feed her by hand three times a day.”

My arms ached from strain and burned from the lactic acid buildup caused by trying to hold a wildly spasming child.  I handed her off to Mark.

“Has she ever aspirated stuff and developed pneumonia?” the doctor asked.

“No.  She has an excellent choke reflex.”

“If she ever does develop pneumonia,” he said, “have you thought about what you’d want in the way of intubation …”

“Intubation?” I asked, perplexed.

“ … intubation and respiration and …”

I realized what he was saying.  “You’re talking about end-life care,” I said.

“Yes.”

* * *

The grammatical structure we call the question is sui generis in human language, not only for its inbuilt invitation to engage and respond but also for its sexy qualities as an all-terrain vehicle for uncertainty and seeking.  Lively inquiry is right up there with metaphor for its boundary-crossing fluidity—for how it transports us.  Like a good metaphor, a good question can be a provocateur of consciousness.  It can elicit a wide range of responses—in a single person.  It opens matters up.  A good question can get us across.

Experiences with M have suggested that the brain is encoded to recognize the music and inflection of spoken queries.  Back when she began making her way out of to us past her cerebral cave-in, my questions to her were the first language she responded to vocally and consistently.  She didn’t understand my words, yet her badly injured brain registered that the musical phrasings with a rising lilt at the end that marks most uttered questions called for her reply.  She answered—reflexively?—with soft, affirmative hoots to nearly every question I asked, even ones asked within her hearing not directed to her. I found ways to build on those responses, eventually offering her choices and teaching her to make her preferences known. Now she displays an impressive array of affirmative answers.  The hoot endures, but when she’s feeling especially interested, she’ll speak, in a soft, breathy voice, a very lovely, very generous, “Yeah.”

Working with M’s answer tick has raised other questions.  Suppose an ability to recognize questions and a compelling urge to answer are indeed built into our brains.  Could this suggest that interrogatory language opens a door to our attention that we might find difficult to close at will?

Also, I found it intriguing that M’s default answer to any question was affirmative in tone.  Are we wired to say, “Yes,” perhaps as a basic reflexive confirmation of our listening presence? Possibly, many of us feel a strong impulse to answer, even when we don’t find the query per se very interesting.  Which might cast light upon why so many sales pitches open with questions, especially ones that amplify a listener’s natural “yes” response: “Do you want to save hundreds a year on your car insurance?”  “Would you like to help a kid stay off the street and out of trouble?” The question—particularly the spoken-aloud question, which travels on a strong current via the ear to a person’s consciousness—might just have a straight shot into the human mind, laying it wide open.

* * *

Our trip to the doctor was supposed to answer a simple yes or no question: Does M still qualify for Social Security benefits?  Somehow, that question had tipped over into one having no bearing on her eligibility for benefits.  It also queried conditions not in existence. Where had it come from?  My mind suddenly found itself teetering on a tightrope of responses, one of them rapidly focusing, very cold anger.

Distracted with trying to keep M arranged comfortably, my husband had missed this bit of conversation.  He started talking about something else.  “He’s talking about end-of-life care,” I explained, alerting him.  To the doctor, I said, “Naturally, we want to keep her alive as long as possible.”

The doctor pressed the issue a bit more and Mark took up the matter.  At that point, I lost focus on what either was saying.  I rubbed my arms to relieve the pain from holding M and sighed, “Gosh.”  The longer the discussion went on, the messier, the more painful, and the more precarious I knew it would become.  “We can’t make such a decision until the circumstances arise,” I said, ending it.  Mark asked the doctor a few more questions about meeting Social Security’s requirements.  We gathered M up and got her out of there, both Mark’s feelings and mine chafing rawer by the moment.

In the car, I wondered, “Why doesn’t anybody ever ask us the good questions?”

To explain what I mean by “the good questions,” allow me to reveal a fantasy I have, an imaginary conversation with a dream doctor.

Just like this real doctor, my fantasy doctor asks, “Is she on a feeding tube?”

I say, “No.  I feed her three times a day by hand.”

Rather than saying little to nothing about this important bit of information, my fantasy doctor says, “That’s rather unusual.  How does that work?”

Me: [da-da-da-da-da … explaining how it works]  “… Then when she was about three and a half, she lost her swallow reflex.  She came very close to having a tube implanted.  But I discovered a way to re-stimulate that reflex and got her swallowing on her own again.”

Looking really interested, the doctor asks, “How did you do that?”

Me: [da-da-da … explaining how I did it.]  “… At first, it took about two hours per meal to get enough into her.  Gradually, we worked out a routine and she started taking her formula at a faster rate.  Now we’re down to about half an hour per feeding.  Oh, plus the wheelchair rides I give her before and after each meal to prepare her mentally to eat and to aid her digestion.”

This very attentive doctor says, “You said, ‘formula.’  Is she on a completely liquid diet?”

Then I explain, “Yes, one my husband developed.  It uses high-quality ingredients, including cream-top, live culture yogurt.  She used to suffer severe reflux, often throwing up her last meal in frightening, middle-of-the-night episodes.  But the live culture yogurt put a stop to that.”

Doctor says, intrigued: “But why a liquid diet?”

Me, excitedly: “It pretty much eliminates the risk of her choking and aspirating solid food.  If she did that, she’d almost certainly have developed pneumonia by now, possibly more than once. I think the liquid diet also helps avoid other serious problems.”

Completely fascinated now, the doctor asks, “Back to the reflux—you were able to stop her reflux without the use of medications?  Just yogurt?”

Me: “Yes, it worked for us.  My husband thought about the problem and wondered if live culture yogurt might help.  He added the yogurt to her formula and the nightly vomiting episodes stopped immediately.  She still has occasional mild trouble, but nothing at all like those awful, middle-of-the-night episodes.”

And then the doctor says, animatedly: “Interesting!  Some of what you say could help other patients.  Would you mind if I ask more questions?”

Me, hungrily: “Please do.”

“Has she ever suffered seizures?”

“When she was a baby she seizured several times a day—petit mals.  But we found a way to control and then stop them …”

On and on.

The real life medical professionals we’ve encountered have not proven to be anywhere near as attractive as my fantasy doctor.   When the ophthalmologist pronounced her blind and I countered that she wasn’t, rather than ask me to present evidence, he said, angrily, “I’ve been doing this for a long time” and threatened me with home monitoring to “find out what’s really going on.” One of her primary therapists declared, “She has no interest in interacting with others” and dropped us from the physical therapy program, just as M was beginning to form a bond with her—her first outside-the-home relationship.  Medical techs and other interested parties told us firewall folklore that rationalized abandoning her in the wilderness of God’s will. Once, when Mark reported my observations of M’s behavior to one of her doctors, the doc confided to my husband, man-to-man, that “Mothers are the worst observers of their children’s conditions.”  Some of the questions we’ve been asked have been accusatory: “Are you keeping her from returning to her Father in Heaven?”  And now: “Have you considered what stance you might take in ending her life?”

None of these care providers wanted to stir one toe beyond whom they already were and what they thought they already knew to engage with her.  M, on the other hand, crossed great distances under nearly impossible conditions, bringing with her exhausting but inexhaustible gifts of insight and awakening.  Her circumstances provoke, frustrate, take my husband and me to the very edges of our known universes and then beyond.  Again and again she has opened up my thinking, drawing me past my own bounded awareness.  In turning to meet her, I’ve gotten past and over and over and over myself.

In other words, she is a great question.  She’s a brilliant question, of the sort that, asked of the right people, gives rise to the development of new vaccines, surgical procedures, and rehabilitative therapies.  She’s a poser that, confronting alert and interested minds, could draw back the curtain on the nature and development of human consciousness.  She is the adventure that that changes everything and that costs us our lives as we know it.

Before heading home we took her on a drive along the highway to give her a taste of speed.  As we approached sixty mph, I saw her focus turn inward to the sensations she experienced as her center of gravity tipped and rolled gently and shifted into turns with the movements of the vehicle.  She was interested and engaged.  Little smiles flickered across her face.  Through my arm spread across her chest, I felt her body relax more than it had at any other time during the outing.

“Do you like going for a car ride?” I asked, just to touch her with my voice and to feel her touch in response.

She hooted a soft “yes.”

So wonderful to see her at ease.  My body, on the other hand, bound up tighter as I brooded over the doctor’s question.  My arms and hands, stiff and strained from holding M during her spasms, shook uncontrollably, as if they’d absorbed her palsy.

We went home, unloaded M, and sorted and settled everything out.  I looked for Mark and found him sitting at his work desk.  “I want to scream,” I said, walking into his office.  He said something that I couldn’t hear. But he reached for me, and I understood that.  We met in an exhausted embrace, him weeping against my sweater, me crying into his hair.

To be continued …