And basically I didn’t give a shit.
Less than half a year before I’d watched a patient of mine killed on the six o’clock news. That event had shaken me to my core.
I knew that my reaction to his death—emotional withdrawal mostly, my downhill slide lubricated with too much ETOH—was upsetting the equilibrium in my marriage. Controlling my decline felt beyond me. The timing wasn’t ideal. My wife’s MS, always a worry, was in a precarious phase. She and I each needed caretaking. Neither of us was in great shape to give it.
That’s why I was way too weary to quarrel about remodeling with a friend I adored. The design of the waiting room wasn’t likely to climb high on my ladder-of-life concerns. Dental? Psychological? Didn’t matter.
I drew a solitary line in the sand at Diane’s request for piped-in yoga music. She didn’t call it yoga music; she’d said something about needing the sound of humility in the space. I knew what kinds of tunes she wanted. She was talking Enya.
Uh-uh.
She didn’t argue when I vetoed the background drones. Her silence didn’t indicate abdication. She planned to wait me out. If I was serious about wanting to keep Enya at bay I would need to be vigilant.
I doubted that I had the energy to keep my flanks defended.
Diane knew me well. Well enough to know that about me.
TWO
I WAS slow, but I got there.
Holy shit, he’s covered in blood.
The pink hue and the slimy red worms of coagulating plasma that were streaking through the water in the fountain had befuddled me at first—naïvely, I didn’t immediately consider either sign to be alarming. My initial, fleeting impression was that Diane had introduced yet another new design concept into our waiting-room ambience and I was too far out of the current consciousness loop to recognize it for what it was.
Only seconds before I opened the door and spotted the fouled fountain I’d been walking down the hall from my office to retrieve my next appointment, a young man named Kol Cruz whom I’d seen only twice before. As I turned my attention from the perplexing fountain and its pink water I spotted Kol sitting on one of Diane’s new chairs opposite the water feature. Despite the profusion of blood—the glimmering mess covered his hands, arms, and face as well as the front of his shirt, his fleece vest, and his trousers from the knees up—he seemed reasonably serene.
The waiting room was having the effect that Diane so cherished—for Kol her design intervention seemed to be having an anxiolytic impact equivalent to high-dose beta-blockers or IV Valium.
“I tried to wash up,” Kol said without looking at me. Although he sometimes glanced toward my face, his gaze never settled higher than my mouth.
On closer examination, the rosy mess on his delicate hands and arms did appear to be diluted. I was still thinking I don’t need this, but I was also reflexively preparing to try to do something useful, even—well—therapeutic.
I reminded myself of a lesson from my distant internship training in a psychiatric ER: The single most important thing to do during an emergency is to take one’s own pulse. After that? In the current circumstances I had no idea. I didn’t know whether Kol needed a seventy-two-hour hold, an ambulance, stitches, or a big roll of Brawny.
“Are you still bleeding?”
“No,” he said.
Okay. “Is that…your blood?” The alternative was worrisome.
“Yes.”
I was somewhat mollified. I put on a serious, concerned expression and said, “Kol? Are you all right? Don’t you think you need to…maybe see a doctor? That’s a lot of blood.”
He said, “You are a doctor, Dr. Gregory.”
Kol had me there.
THREE
I HAD misread the early clues.
Over the first couple of days of the previous week the musical soundtrack that accompanied the bustling early-evening family time in our house had traveled from the familiar territory of the White Stripes, Oasis, and Neko Case to a surprising but far from disquieting pause at the second and third U2 albums. After Bono’s extended cameo the musical selections moved back in time to Joni Mitchell, the young Van Morrison, Dusty Springfield, the Doors, Don McLean, and then on a particularly wacky turn, to Leonard Cohen—Leonard Cohen?—before settling for a couple of evenings on a repetitive set of Erik Satie interspersed with some alluring tracks from Tord Gustavsen.
Other artists made brief appearances. Patsy Cline and Johnny Cash each got two-song auditions in advance of dinner one day, and a Keith Jarrett piano improvisation lasted all of five minutes late the next afternoon while Lauren was deveining shrimp for stir-fry. John Coltrane didn’t even get to finish introducing a haunting little melody before he was banished into the digital ether as I was loading the dishwasher after supper.
Although I recognized that changes were occurring in the score that accompanied our lives’ pulse—Leonard Cohen’s laments as counterpoint to the delight of my daughter’s bath time was a contrast that was hard to ignore—I was too intent on trying to force the data into the confines of my experience to see it for what it really was.
Since her previous birthday my wife, Lauren, had become the family DJ. Why? She had a new iPod. Although I was the gift-giver, I didn’t share her enthusiasm for the device; I had only recently started feeling comfortable with CDs.
Lauren moved into the digital world without me. Her wireless network humming, she’d curl up with her laptop in our bed in the evening and download songs and develop playlists in the quiet hours after Grace was in bed. All that was left for her to do was to stick the iPod into a slot in front of a pair of speakers and we would have music coursing through the house.
The tracks she plucked from her iPod’s inventory hinted at her moods. The better she was feeling—pick a category: about life, about her health, about work, about her husband—the more contemporary and upbeat was the music she chose. The more troubled or reflective she was feeling—increasingly common moods those days—the more oldies and ballads and jazz and classical reflections tended to accompany our family routines.
I used the music as a barometer—if I knew the aural pressure variants, I liked to delude myself into believing I could forecast which way the winds were blowing.
Maritally, it had been an inclement winter. It was looking like an inclement spring.
When the tunes were downers those days I considered myself to blame.
I tried to decipher the meaning of Lauren’s recent playlists and their melancholic homage to whatever part of the past they represented. Even if I ignored Patsy Cline, Johnny Cash, Keith Jarrett, and John Coltrane I remained mystified by the Morrisons—Jim and Van—and Leonard Cohen. I was completely confounded trying to fit the loop of Satie and Gustavsen into any category. Upbeat they were not.
I feared something was up, maybe something more than her growing intolerance for an increasingly distant husband who stayed up nights alone drinking vodka.
“How are things at work?” I’d asked. “You feeling okay?”
Her answers told me nothing. I waited with trepidation. I was coveting routine those days, holding on to it with the kind of denial that a nine-year-old uses to keep bedtime at bay as he grips the last light of a summer evening.
That night in bed Lauren mumbled something into the still air. Her breathing had been regular and shallow, her body so tranquil below the thick comforter that I suspected she was vocalizing unintentional color commentary on the progression of a dream. But I hadn’t understood her words, if words they were, and I decided not to risk waking her by intruding with a vocalized “What?”
Then she sighed. I opened my eyes. People don’t often sigh in their dreams.
“Music hurts,” she said ten seconds later as part of a rushed exhale.
The was-my-wife-awake-or-was-she-asleep conundrum wasn’t totally resolved. “Music hurts” was a vague enough pronouncement that I couldn’t fit it into either level of consciousness. The earlier sigh
remained unexplained.
I was beat up. I was tired physically and in just about every other way. I flirted with pretending she hadn’t spoken. I wanted to close my eyes and pray for sleep that wouldn’t come. But when she sighed a second time I asked, “You awake?”
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-of-the-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 pain-killers, 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 shunning 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 females 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 ha
nd. 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.
Dry Ice Page 2