My question was reluctant. My words weren't generous. A rote performance of concern was the best I could do.
I don't need this.
My mantra those days.
Om.
"Yes," she said. Although her reply was whispered, it shouted "defeat" as clearly as a white flag on a stick and a throaty yell of "I surrender, sir."
I considered waiting for her to go on, but I said, " 'Music hurts'? Did I hear that right?"My impulse was to add, "If that's the case, Leonard Cohen must be excruciating." Instead I rolled closer to her onto the chilled cotton that marked the middle-ofthe-night no-man's land in our bed. My hand found her warm, smooth abdomen, the tip of my pinky sinking into the shallows of her navel.
"Remember the brain mud? When we left Diane's party?"
"Sure." I thwarted a deep sigh of my own.
No, no.
Please, no.
For at least a year Lauren and I had been discussing having a second child. Despite her looming biological finish line I was more eager than she to get on with it. Her health was the stated reason for her reticence. She wanted to be sure she was stable for the stresses of pregnancy and infancy. Brain mud meant that she wasn't stable enough.
A fortnight or so before, Lauren and I had been at a birthday party at Diane and her husband Raoul's foothills home up Lee Hill Road above North Boulder. Raoul was a handsome, rich, charming Catalan-born tech entrepreneur. The celebration was for his
anys
. Long before the party started to ebb Lauren searched me out on the deck where I was sitting in front of a roaring fire pit trapped in a protracted discussion with a business associate of Raoul's who was inexplicably fascinated with the delivery of the Internet over the electrical grid. Lauren put her lips close to my ear and asked if I would mind leaving the festivities early.
"What's up?" I said. Still whispering, she admitted she was beginning to feel foggy and that her thinking was sluggish—a condition she'd long ago labeled "brain mud." We had come to consider the onset of brain mud a warning sign of an imminent multiple sclerosis event, either a fresh exacerbation of her disease, or, if we were lucky, merely an irritation of an existing lesion. A fresh exacerbation meant a new symptom, which could be a crisis. An irritation would usually mean a temporary rerun of an old, unpleasant episode.
I excused myself at the precise moment my companion was getting into the meat of his argument about the money that could be made by people with vision. I didn't exit the conversation reluctantly—those days I counted myself among the blind masses.
On the way home I checked with Lauren about a chronic problem that had only recently waned—deep pain that crept up her legs from the soles of her feet, sometimes reaching all the way to her hips. The pain had been worsening gradually over a period of years. During the previous eighteen months it had become insistent enough that it was one of her major daily challenges.
The agony had caused her to go on and off narcotic painkillers, but Vicodin and Percocet had proven less than effective palliatives. Even when they helped she despised the sedation that came along for the ride. Any discussions we'd been having about having a second child became a casualty of her chronic pain and her reliance on narcotics. We hadn't talked about conception in months.
Cannabis provided her with some relief, but she had reached a decision that she didn't want our daughter to associate her mother with the telltale aroma of weed, and she had given up using it. I remained ambivalent about her decision.
When coupled together, U.S. law and Colorado law regarding cannabis form legal quicksand. For registered users with a prescription, marijuana is legal in the state of Colorado. Federal statutes allow no such exception; marijuana is an illegal drug under U.S. law. Lauren had chosen not to sign up for a state authorization card as a registered marijuana user—she feared the professional consequences if the system's anonymity failed and the news leaked out.
Although I respected Lauren's concerns about Grace, I was also aware that by choosing to forgo cannabis Lauren was shun ning something efficacious. And where MS symptom-abatement was concerned not too many things were efficacious.
More selfishly I found that the time we spent together on the high deck of our house in the evenings after Grace was in bed—Lauren toking on her bong, the gurgling water floating with fresh-cut lemon flutes—were nice moments. As the cannabis did its thing and her symptoms abated we often had our softest interlude of the day.
On the way home from the party Lauren assured me that the pain wasn't worse. We stayed vigilant over the next few days, steeling ourselves for the inevitable caustic punch line to the brain mud—for her vision to deteriorate, for her equilibrium to evaporate, for some muscle to lose its tone or its strength or to begin to spasm, or for her bladder to stop emptying on command, or . . .
The list of possible consequences was endless. With MS, wherever there was a CNS pathway there was a potential symptom. But nothing emerged. No new symptoms. No reruns of old symptoms.
Or so I thought. I'd never considered that the new symptom would be the infiltration of some nefarious music-killing poison into her ears.
"Music hurts," she repeated. "It irritates. It's like . . . rubbing a burn. Or touching a blister. Or having an eyelash in my eye. It's just so . . . unpleasant."
Oh.
The recent cornucopia that she'd selected from the iPod suddenly made more sense. "All week long you've been looking for songs that—"
"Don't hurt," she said.
"Find any?"
"
Ground
isn't too bad."
Ground
was the Tord Gustavsen Trio album. "And Satie's not awful. But it all hurts. Loud, soft. Jazz, rock. Vocal, instrumental, country. Everything. Even the Wiggles," she said, laughing a laugh that made me want to cry. The Wiggles had caused us pain for more months than either of us could count, but the pain of the Wiggles in the hands of a child was merely the pain of endless repetition.
"Anything harder to listen to than the others?"
I heard her swallow. "Dusty Springfield. And Don McLean."
Ballads?
I thought.
Odd.
I lost a moment trying to imagine what it felt like—for music to hurt, especially music as comfortable as Dusty Springfield and Don McLean. I couldn't get there. I also realized what I had missed as Lauren had left unconscious clues during the week. The most sobering hint?
The melancholy lyrics of Don McLean's "American Pie."
Bad news on the doorstep, indeed.
"Any other new symptoms? Fatigue? Dizziness?" The conversation was easier in the dark. For both of us. Talking about her illness was something we had never done well. Since the previous autumn we'd done even worse. I kept telling myself that history and love would guide us through it.
"Same as always."
"The pain in your legs?"
"It's okay. Whatever I'm doing . . . is working."
"What are you doing?"
"Nothing. Some stretching."
She wasn't convincing. Lauren was one of the few adult fe- males I knew in Boulder who—despite a brief flirtation—didn't at least dabble in yoga. I would have bet good money she couldn't tell Iyengar from Bikram from Ashtanga.
"Really?" I asked. "You haven't gone back to Percocet?"
"No."
I wanted it to be true. Some good news would be welcome. "It's just whatever's going on with your ears? Did you talk to your neurologist?"
After a poignant pause she said, "No. And it's not my ears; it's my brain."
I knew that. I did wonder about the edge in her tone, but gave her the benefit of the doubt and risked another question. "Will you talk to him?"
I felt her abdominal muscles stiffen below my hand. She said, "Maybe."
There was a time in our marriage when I would have chosen that instant to press her. I might even have gone through the motions of trying to insist. Maybe I was older and wiser. I was definitely more weary. Fighting would have required energy I didn't have.
"I'm so sorry," I said. A better spouse would have known better words. I once knew better words. But those days I wasn't a better spouse. The path of least resistance was to provide compassion. Comfort if I could. "Is there anything I can do?"
She didn't even bother to tell me no. She asked, "Can this disease really take away music?" Her voice was hollow, disbelieving. But not disbelieving at all. "Can it?"
She wasn't waiting for me to answer. Hers was the most rhetorical of questions. We both knew that her disease could take away anything.
"Maybe it will pass. Most of these things do."
My words were the literal truth. But the phrase also served as a palliative to the uncertainty of MS. "Maybe it will pass" was the artificial levitation of hope we inflated to counterbalance the gravity of looming sclerotic despair.
Much of the time the illusion worked.
I heard that sigh from her again. For the second time she said, "Yes." To my ears, the word still shouted "defeat." If the room hadn't been so dark, I probably could've spotted that flapping white flag.
I surrender, sir.
Me, too.
I thought.
Me, too.
FOUR
I WAS ruminating when Lauren mumbled into the dark that music hurt.
I was in the midst of an extended phase where I didn't often see sleep before the bars emptied in the city below our home. I knew what was going on—if I had the courage to look in the mirror, I would have seen a cloud racing to catch me from behind. I'd lived for over two decades believing that I could outrun it before it consumed me.
My refusal to look had long been evidence of hubris and of fear. The hours I spent after midnight longing for sleep meant that my hubris was in hospice care. It was dying.
My fear wasn't.
I'm a clinical psychologist. As part of my job I learn other people's secrets. I know secrets about drugs, and sex, and crime, and infidelity. I know secrets about money—who spends it, who hoards it, who steals it, who borrows it, and where it's stashed. I know work secrets, big-business secrets, old family secrets, boring secrets, and the occasional fascinating secret. I even know secrets about secrets. Most of the secrets are much less interesting than the person guarding the information suspects.
I've learned by listening to the nuances of many confidences that the power of a secret is generated not only by the nature of what's hidden, but also by the potential charge that is kept at bay by the act of segregating its existence.
When someone moves information from the category of "private" to the category of "secret" the knowledge takes on the kind of potential energy that is locked inside atoms and contained within huge concrete and steel domes. Infinite energy. Destructive energy. Because of that potential force the truth that is locked away takes on a connotation greater than simply "hidden."
Revelation of something private might mean embarrassment. Revelation of something secret would mean blame. Or guilt. Or worse, shame.
But my own lifetime living with secrets had taught me that many of us had greater fears about our secrets, fears that did not diminish, but grew exponentially over time.
The first oversized fear was that revelation would mean loss of control.
The second big fear was that the act of having chosen to keep a secret from a loved one would become more potent than whatever knowledge was hidden. We choose secrecy at one point in our lives—presumably it makes sense to us at the time—and we protect the secrecy through the phases that follow. Do the facts truly remain dangerous later on? Worthy of all the subterfuge? Or does the existence of the secrecy become the real danger requiring protection?
Often my job as therapist was simply to help my patients move the explosive information back to where it belonged—to shuffle it from the radioactive territory of secret to the safer land of private, or to the supposedly inert land of disclosed.
Sometimes that work is as simple as it sounds. More often it is not. Secrets feel more powerful than they are. Once we create them we become the wizard in our personal Oz, and we guard the secrets with all the resources and all the artifice of our mythical kingdom. We willfully slaughter Toto before he gets anywhere near the curtain.
I don't treasure the secrets I learn from patients, and can't remember a time that I felt an advantage from knowing one. Often quite the opposite. My professional career is littered with bruises I endured and bruises I caused by safeguarding patients' trusts. But the work mandates that I keep secrets. Most of them get relegated to the kind of mental storage where I stash more mundane information I might need to pull out on a moment's notice—patients' grandchildren's names, or the states or towns where a client lived as a toddler or a teenager.
Rarely did the facts of a patient's life stay in my conscious mind in the hours and days after a therapy session, circulating through my brain like oxygen-deprived blood being pumped back to my lungs. Almost never did a patient's secrets resonate later in a way that interfered with my sleep, or cause me to ruminate on my own rotting truths.
But that night as I lay awake—the night that Lauren admitted that the music hurt—I was reviewing one particular patient's secrets. I was thinking about the patient whom I had watched die on the evening news. The patient whose death remained available on video feed only a click or two away on the Web.
In none of the news reports was my name, Alan Gregory, mentioned. Even if it had been, I could never admit that the man had been my patient; I could never tell anyone his many secrets. Although he'd shared them with me, they were not mine to reveal. He was important to me because his death and the existence of his secrets never failed to remind me that I had my own secrets, and that mine remained very much alive.