Wilderness Interface Zone

In part three, the mental illness storyline continues, but the mystery of the cause of Mark’s troubles comes somewhat to light. I muse upon the idea that when misfortune besets you, others watching from a distance sometimes suppose you must have done something to deserve it. Just when I think everything’s on the upswing, my daughter springs yet another disturbing surprise.  I return to the story of my canyon trip on Thanksgiving Day. Parts of this segment are unpolished–apologies for that. You can find part one of this series here and part two here.

I spent the rest of that night struggling to keep my head and to work up plans to get Mark the help he needed, even if he refused it.  The next morning, while he still slept, I rose early and scrambled to discover our options, making some phone calls.  The PCP wanted me to bring Mark to the emergency room for a CT scan in case he’d suffered another stroke.  A stroke could account for such a radical change in his behavior.  With as many CCMs in his brain and brain stem as he has, the possibility that yet another malformed vein had ruptured or begun seeping was significant.

But a phone conversation with the manager of the local clinic sparked sudden insight that rang jackpot bells.  I told her that I’d only ever seen Mark behave like this when he’d begun a new medication.  “Has he started a new medication?” she asked.  “No,” I said, but her question prompted a few facts to drop into place. “But a month and a half ago the dosage of one of his old ones was doubled,” I said, realization dawning. I’d forgotten about the dosage increase.  A cardiologist Mark had visited had increased the previously prescribed dose of a drug that Mark seemed able to tolerate. I thought that might well be the cause of his latest personality bump, but I needed to talk him into meeting with his PCP to find out for certain.  I told the clinic manager I would try to get him to come in as soon as I could manage it.

I happened to be walking by the bedroom when he shuffled out.  I paused to appraise his condition.  His aspect was completely different; he looked like himself rather than a paranoid king. There was pain and confusion in his eyes when he looked at me, but I saw with relief that he looked at me, not at a heartless Jezebel. His first words, in familiar voice and much changed from the night before: “I’m sorry, honey. You don’t deserve this.”

“We both know this isn’t about what we deserve,” I said.  We’d talked about this: Nothing either of us had done during our lives separately or together could account for the outrageous degrees of hardship we’d faced since shortly after marrying.  The idea that we had “earned” our flamboyant state of affairs by doing this or that or by not doing this or that was meaningless, as were platitudes like, “God never gives you more than you can bear.”  If indeed God was authoring our unlikely story, he had certainly provided us more plot twists than many people would find believable let alone bearable. For whatever reason, the cosmos has gotten into the habit of dealing us ridiculously rough blows. If we went by the popular “you get what’s coming to you” model of justice active in many cultures, only a pair of heinous criminals could have behaved badly enough to come to such punishing conjuncture. But both of us are actually pretty nice people, if I do say so myself.  No–something else was at work in our lives, something we’re still seeking words for.  But “just desserts”?  Huh-uh.

In Christian scripture, Jesus devoted himself to upending this take on “fairness” rooted in the eye-for-an-eye economy born generations ago as the Law of Moses.  Its narrative continued to be used to shore up legal and religious justification for judging, shunning or killing the “not us” (folk not of the tribe) and, within the tribe, women, animals, and–when reasons seemed especially compelling–men, including Jesus himself.  Jesus brought to bear the entire rhetorical force of his Sermon on the Mount, including The Lord’s Prayer and The Golden Rule, against the Law of Moses, intent on breaking the stranglehold that this entrenched narrative had exerted for generations on a people he loved.  It had stopped their development and held their concepts of human relationship to the transactional thrift of tribal bargaining: “You watch my back, I’ll watch yours.” It prescribed retribution for all perceived wrongs, from those done you by others to those you did yourself and for which animals would be sacrificed in your stead. It enabled thinking that if something unpleasant happened to someone–especially someone you didn’t like or that you perceived as not serving the social or religious code the way you did–then he must have done something to deserve it, and God has had his way with him.

Master, who did sin, this man or his parents, that he was born blind?

At every opportunity, Jesus flipped this social code prescribing negative reciprocity on its back, or else doubled it over on itself, turning it toward the good.  “Ye have heard that it hath been said, An eye for an eye, and a tooth for a tooth: But I say unto you, That ye resist not evil: but whosoever shall smite thee on thy right cheek, turn to him the other also.” “And forgive us our debts, as we forgive our debtors.” And the wry, “Whatsoever ye would that men should do to you, do ye even to them”–an invocation of the Law of Moses meant to disarm the violent, dark side of the “an eye for an eye, tooth for a tooth” law of reciprocity set down for Israel in Leviticus.  Jesus’ bottom line on God’s own distribution of good: “… for he maketh his sun to rise on the evil and on the good, and sendeth rain on the just and on the unjust.”  In other words, you can’t appraise the uprightness of another person’s soul based by whether good circumstances or bad befalls him. To Jesus’ thinking, the time had come for the children of Israel to grow up.

The negative-reciprocity model inherent in “you get what you have coming to you” was not unique to the Jews. Jewels of The Golden Rule shine in many cultures as teachers have tried to spark the imaginations of their people and open up their rigid narrative stances with words that, if the mind yielded to them, could clear ways to better prospects.  “Tsekung asked, ‘Is there one word that can serve as a principle for life?’ Confucius replied, ‘It is the word shu–reciprocity.  Do not do to others what you do not want them to do to you (Analects).’” “Comparing oneself to others in such terms as ‘just as I am so are they, just as they are so am I,’ he should neither kill nor cause others to kill” (Sutta Nipata). “One going to take a stick to pinch a baby bird should first try it on himself to feel how it hurts” (Yoruba proverb).

Centuries and centuries of such teachings have not yet completely replaced the miserly and still common practice of accounting for others’ misfortunes by assigning them debts of trespass, either by way of public rhetoric or in the secret, self-sedating whisperings of the fearful heart: “He got what he had coming to him.  _________ has served him his just desserts.” (Fill in the blank with the name of the CEO of whatever transactional power structure you’d like.)  A contemporary, ostensibly equitable saying, “There but for the grace of God go I,” seems to acknowledge that another person’s misfortune could have happened to anybody, including the words’ speaker.  But the phrase “but for the grace of God” suggests that, through his grace, God has deflected what without grace would be deserved, or at least, not prevented.  A natural question that arises, then, is, Why would God’s grace intercede in one case but not the other?  Thus what seems on the surface to be an expression of empathy and an acknowledgement that misfortune may befall anybody actually separates those who receive God’s grace from those who don’t.  Better to leave out the “but for the grace of God” and say, “There go I.”  Better still: Where possible, turn in your footsteps and actually, truly, go with the Other, even into inhospitable, unexplored countries of the mind.

To his sorrow, Mark remembered everything he’d said and done the two days prior.  More importantly, he agreed that he needed to see a doctor.  That afternoon, I drove him to the ER at San Juan Hospital in Monticello.  He talked non-stop the entire, twenty-plus minute drive, expressing fears he was coming unhinged.  I said, just once, “I think it’s the meds, dear.” His psychological symptoms weren’t the only clues; he showed physiological ones, too.  He’d been severely congested, suffering a constant flow of mucus and saliva that made him cough and choke whenever he lay down. An inexplicable flow of involuntary tears ran from his eyes.  Our PCP did some research and discovered that at the higher doses that the cardiologist had prescribed, one of Mark’s meds becomes “non-specific” for some users, resulting in the drug targeting other major organs beyond the intended ones, including the heart and brain.  One reported side effects of the drug at those higher dosages was noted as a personality change.  The PCP told us that the heightened production of body fluids was the result of the burden the drug had placed on Mark’s adrenal system.

The PCP remarked that he’d never before seen anyone successfully “talk down” a person from the heights of what he called paranoid delusions and convince him or her to come in for help. I wasn’t sure that’s what I did; I might simply have accompanied Mark through the end of a manic phase and kept the process rolling when he came out of it. While the drama had been stressful and frightening, looking back, I see it as the destruction of a familiar home–settled ways of thinking–and, in its wake, the opening of a frontier with a “come hither” vista.  Exciting, after all. We pray for protection against such disturbing circumstances, or when we’re in them, we pray for delivery from them, calling them evil.  We amass wealth and power in an attempt to ward off destroying angels of every ilk. When I went down those stairs, I felt frightened and full of dread, afraid of the worst–whatever that might have been.  When I came back up, I was tired but awakened to yet another layer to life beyond what I’d seen from my previous standpoint until that older way of thinking buckled under the weight of another world breaking through what I’d thought to be a stable sky. That new view was  stunning, though I’d barely begun taking it in.

In his via dolorosa, Mark needed me with him, though he seemed to spurn me as unsuitable company. My uncertain but insistent presence affected the course of the journey.  Should we try to pray away such waking nightmares? Perhaps.  But if our prayers for protection are answered, what do we give up  in the bargain?  Whatever drug therapies or other treatments may be found for mental illness, sure progress rides on the depth of our willingness to join ourselves to persons squirming in the grasp of such powerful circumstances.  It isn’t just for the sake of the mind struggling to find balanced expression of its differences, but for the sake of those of us abiding in the cozy stability of our “normal,” chemically consistent, cerebral hemispheres.  If we label the experiences of the brain variable folk as “faulty wiring” or “meaningless suffering,” we may well be missing the invisible door in the wall of our own demarcated thinking that opens onto greater prospects for the human condition.  What prospects might those be?  I wouldn’t risk limiting them by saying.  Let’s just get through and see what our choices give rise to.

We stopped the medication and the most severe symptoms receded or softened, but only temporarily.  With this incident, it seemed that we’d passed a point from which there was no return. Over the next several months, Mark continued to present symptoms of rapid cycle, bi-polar behavior. None of these episodes reached the delusional heights of the July incident but each required my focused attention, often well into the early hours of the morning. At the end of August I started work at the local community college, now a branch of Utah State University.  I taught a freshman composition double class–three-fourths of which was made up of concurrent enrollment high school students (a new experience for me, and a mind-bending one).  Also, I began tutoring for a program on campus intended to increase the retention rate of its Native American students and help more of them reach graduation.  During this time, helping my husband navigate such choppy psychological seas reached nearly epic intensity. Nearly two decades earlier, when my special needs daughter was born with (unbeknownst to us) a quarter or more of her brain virus-ravaged and liquefied, I’d had to strip away cherished expectations, one by one, in order to fit through the barely visible opening between us and grope my way toward her in the netherworld where she’d been confined. My husband’s needs had begun running nearly as deeply.

He stabilized somewhat around the time of Sky’s death. I thought that maybe we’d passed through the worst and that I could relax a little.  But four days before the old dog died, my fourteen-year-old daughter–my last, big roll of the reproductive dice–collapsed suddenly in the kitchen.  Her thudding fall caused unwashed pots and pans stacked on the counter to rattle and silverware in drawers to jingle.  I crossed the rooms between us in seconds and found her lying on the linoleum, one arm outstretched in front of her, her legs folded back. She opened her eyes and blinked.  “What happened?” I cried.  “I don’t know,” she said as she sat up slowly.  My husband and son heard the commotion and converged on the kitchen.  We helped her up and led her out to the couch where we could sit her down and examine her.

That night Mark and I sat up ’til four in the morning talking, worrying that my daughter’s inexplicable collapse recalled some of his symptoms.  While not very much is known about the dozens of malformed blood vessels scattered throughout his brain and knotted into his brain stem, doctors informed him that he probably had a genetic form of the mutation and that his children had a fifty-fifty chance each of having inherited his condition.  I didn’t know if I’d be able to handle it if my daughter turned out to have CCMs, too.  Or my son. My special needs daughter–her brain had already experienced terrible destruction.  Overcome by fear and weariness, I said to Mark that night, “Every hope I had for my life is gone.” “Then we must find new things to hope for,” he said. We didn’t know whether or not our daughter’s losing consciousness signified an unwanted inheritance.  But the extravagance of our circumstances during nearly twenty-two years of marriage has conditioned us to expect extremes.

Then, of course, the old dog died.

So as I left the yard on Thanksgiving morning, seeking something in canyon–a glint of insight, maybe, or a meaningful, even if slight shift in perspective–I forced myself to walk past Sky in her winding sheet.  I touched her.  “Good-bye, old dog,” I said, patting her body.  The walk to the canyon felt unmanageable, an act of foolishness inviting further disaster.  Yet I pushed into the fear and made myself do it.  You never know.  Something bad could happen, but then something wondrous might happen, too.  This is the risk we run with every choice, including that routine decision to drive to the grocery store three miles up the road.

To read part four, go here.