You suddenly understand that there is no separation or distinction between the notes, the spaces between the notes, and the people playing the notes and the people listening to the notes and the church and the street and the city and the earth. Maybe even the universe. You understand in this very brief period of time that Bach’s intimate portrayal of the death of Jesus is one way to become connected to the universe. And you hold on to this for the rest of the concert. As you silently leave the stage after the concert, you look at the other musicians, wondering if they, too, understood or sensed what happened. It is art and it is love, communicated through the soul of Johann Sebastian Bach.
Donna
I STEPPED INTO the elevator, and my jaw dropped. Donna Summer, diminutive, stood in the corner. She quickly looked upward and gazed at the nothingness of the ceiling. Where else could she look? Starstruck, I gawked. I relished the time in the slow lift (and of course all sense of time was absurdly distorted now, as if in a dry-ice disco dream) just to be in her presence and resurrect the lyrics to “MacArthur Park” in my music-memory. “Someone left the cake out in the rain” thrilled and confounded me (and everyone else) when I first heard the song. Who would be so careless? And why, pray tell, did the cake take so long to bake? Then there was that missing recipe. Metaphor was lost to me in the late 1970s. But now, in spring of 2000, I felt proud that finally—sadly wiser, certainly older—I understood Donna’s song.
The words were on the tip of my tongue: “Oh, Donna…you’ll never know how…” But no; I held it back. Out of respect. The gawking was enough. The fifth floor came, the doors opened, and as she exited, with a red scarf whipping behind her, she looked back at me and smiled. How I loved Donna Summer and her endless last dance.
I continued to the seventh floor of Roosevelt Hospital. Stepping inside the well-lit yet cozy room, I plopped down and presented my arm, elbow down, vein side up. The nice male nurse strapped it tightly onto the arm of the recliner with thick tape. After he tapped the area a few times with his fingers, the vein at the crease of my elbow conveniently popped up.
“Are you ready?”
“Yup: let ’er rip.”
“Okay, here goes. Hold still, Marcia. Don’t…you…move…”
I squeezed my eyes shut and held my breath. Not that doing those two things would help. This was my third injection, and I knew the drill; still, I didn’t want to look or breathe. It was important that I not move an inch while I endured the excruciating sixty seconds it took for him to inject ruby-red Adriamycin into my vein. You can’t slow-drip the drug, because it is so caustic it’ll breach the vein and burn out surrounding tissue immediately. That’s why they call it the Big Red Push. And then there was my heart, any heart, which can’t take more than six doses in a given lifetime.
Almost six months to the day after Jinx slammed the phone down, I was diagnosed with invasive breast cancer. And the reason Donna Summer was staring at the ceiling was most likely not because she wanted to avoid a conversation with an adoring fan but because I was bald. Most people can’t look at bald women. I discovered that three weeks previously, when my hair began to fall out during the intermission of a concert. I finished the concert semi-bald. That’s when I began to notice uncomfortable, averted glances.
I squirmed in the recliner, trying not to pant.
“Are you okay?”
“No. Give me the bucket. Fast.”
Charles, the nurse, while still proceeding with the injection, quickly leaned down, picked up the small bucket, and slid it under my chin. I waited, but nothing came up. I supposed that was a good thing, because I had to get to a rehearsal in an hour.
“False alarm, Charles.”
I began to sweat, and tears came to my eyes. I couldn’t get through these damned injections without whimpering.
“Okay, we’re almost done now. Just a few more drops…”
Charles pulled out the syringe, unstrapped my arm, and walked away. I wept like a baby.
Perhaps cancer had been growing inside me as far back as forty years earlier, burrowing deep into my right breast. I imagined those hideous cells hiding behind my nipple, waiting to multiply from the days I ran giggling behind the mosquito trucks in Pittsfield, Massachusetts, inhaling the fairy dust of DDT in the 1960s of my childhood. The arrival of the truck, at about 7:00 p.m., when mosquitoes are at their most ferocious, was something to look forward to—like going for an ice cream cone. Both activities broke the heat of the day. I ran in my pajamas so I could slip directly into bed while the cooling, killer mist continued to chill my body.
My luck-of-the-draw genes might have also been the culprits, but there was no family history of breast cancer. What did it matter? Cancer is cancer, and I set about taking the disease in hand, demolishing it with surgery, six pushes of red chemotherapy, and then topping it all off with forty consecutive skin-blistering doses of radiation.
I did have compassionate friends, including a few special ones who came to my aid during my diagnosis and treatment; also the dear musicians with whom I’d spent many years playing my heart out. My own tribe of oboists gathered around, made calls, and ensured that I was covered in case I was suddenly too ill for rehearsals or concerts. But I rarely missed a concert or even a beat—literally.
Receiving attention and care was not easy for me. I was surprised and bewildered at first because I assumed that, for the most part, I was not well liked. This perception took hold and festered under my skin well before my years at Mannes. I was certain that I was not worthy of true friendship. Indeed, I wasn’t entirely sure what friendship looked like and was wary—suspicious, even—of anyone who would want to be my friend at all.
This utter self-disregard was not glaring or outwardly gleaned by others. A good little actress (I’d successfully hidden so much of my life over the years), I presented as a lively, darkly funny, gutter-mouthed, punctual, always prepared, and somewhat outspoken member of the music community. But underneath, I felt dead certain that my well-deserved self-loathing was a catastrophic reality visible for all to see and believe.
When your parents don’t speak to you for years at a time, it’s hard not to conclude that there must be a valid reason. I was unessential, dispensable, not worth the trouble—not worth even one fight. Wouldn’t everyone else see me that way, too? That was rational reasoning. My calculating and compartmentalizing mind easily projected my own assumptions onto men, friends, and anyone I met.
But there existed a smoking gun right in my back pocket, and it was loaded with a golden bullet: cancer. I actually saw my cancer diagnosis as fortuitous. Further logic led me to bank on the distinct possibility that my family might come to my aid, just as my parents had come to Jinx’s aid when she was diagnosed less than a year before. After all, Jinx had also been considered a colossal pain in the ass. I was finally in the correct state of health to now warrant their attention. Cancer. Happy days.
With my reasoning solidified, I’d made a plan. A few days after my diagnosis, while I completed testing for the upcoming surgery, I’d dispatched notes to my parents and Jinx. That’s what my mother had taught me—any important information should be written in lovely cursive script on a pretty note card and should arrive through the post. I still lived by her rules of comportment. I heard nothing but was still hopeful. Then, two weeks later, while recovering from the operation, I received a Hallmark card in response to one of the notes and ultimately nothing in response to the other. No calls, no urgent footsteps at my door. Silence, again, when I needed a crashing Mahler symphony.
Across the room, Charles sat beside his next victim, preparing to administer the red poison. I blew my nose, wiped my eyes, and thought again about my red-scarfed disco diva. My day was jammed to the gills, so I jumped up, grabbed my oboe, ran to a 10:00–1:00 rehearsal, then played a Broadway show at 2:00 p.m. As I was traveling home on the subway at 5:00 p.m., my stomach felt as if it were inside out, raked raw. The nausea usually held off until the evening after a morning injection, but today
it had been a crafty little demon. Just when I thought I’d gotten the “sick schedule” down, my system decided to change course. The second act of the show had been tough to get through.
When I finally arrived home I experienced a brand-new depth of beyond terrible. It wasn’t just the nausea but also the skin-crawling reality that I was being pumped with poison. The sensation defies words until you’ve felt it. Balloons are balloons. Snowflakes are snowflakes. Red is red. And chemo is chemo. I let the door slam behind me as all the pages in my “childhood journal of firsts” nestled together inside my nude skull.
The phone machine blinked red. But first to the bathroom, then to the kitchen to munch on a few crackers, then to my studio to drop my oboe gear down, then to my reed desk to look at what I’d made the night before. Picking up the reeds one by one, I scrutinized my handiwork as the blinks in the next room nagged at me, pulsing out their backbeat. I wondered who was on the other side of those blinks.
Tired and sick, I decided to forget about practicing and just organize and mentally review my music for the next day’s concert. Busying myself with this mundane task took all of ten minutes, but the night ahead loomed large and endless, like the unreachable horizon across a vast sea. My life was full of music, yet I felt empty—with the accelerator pressed to the floor, the engine revving high, but the gear in neutral.
Drawing a hot bath, I sat in the tub until I felt the chill of tepid water, which usually made me dive under my bedcovers and fall asleep instantly. Not tonight—the blinks, now red screaming beacons, lit up the darkened living room. I still had those blinks to negotiate.
After I’d toweled off, I settled on the sofa. My cotton nightgown was badly wrinkled from a starchy flop sweat the night before, and I smoothed it down, trying to tamp the creases out with the palm of my hand. An urge to vomit was close, and I was panting, trying to stave it off, so I threw a blanket over my legs and curled into a fetal position. Perhaps a bit of TV would distract me. No: it all looked ugly and too crisp—loud and meaningless. I clicked it off with a rough gesture and threw the remote to the end of the sofa. It landed on my toe, and I let out a weak yelp.
Finally I was ready to listen. I reached over my head, felt for the top of the machine without looking, found the right button, and pressed down.
“Marcia, do you want a ride this weekend? I can pick you up at the usual place at twelve noon on Saturday. Just let me know tomorrow.”
“Hey, Marcia, can you play Beast again tomorrow night? I’m still not feeling well enough. Call me in the morning.”
“Miss Butler, your dry cleaning has been sitting here for three weeks. Please, come pick it up.”
The machine was dark, silent, with the wrong words by the wrong people still jammed inside the plastic box. I lay on the sofa, shivering and perhaps feverish, praying for drowsiness to take me down. Instead the steroids my doctor had prescribed to hold back the nausea (they weren’t working) forced me into the graveyard shift: staying awake to think about the right words from the right people.
That steroid-addled night, as I began to feel achy, with a strange and ugly urgency in my chest, I made long lists of all the words I wanted to hear and lined them up, complete with perfectly inflected intonation. The words might falter at first or, alternatively, come out as run-on sentences. But I’d straighten them out and realign them so they would resemble the melody of a perfect Schubert song. I pushed the lists of potential words through my chemo-fogged brain sieve and tried to make them fewer and easier to say. Those spare, culled-down words, spoken by the right people, just might cure my cancer.
Waking with a start a few hours later, I glanced at the clock: 4:00 a.m. At that moment, panting as if a released kinetic energy were in flailing free fall, I felt my rational brain shut down like a citywide blackout. But light was not necessary—or even wanted—because my dark inner gut, that brilliant secondary brain center, had taken over. My belly ached and glowed with a stark and luminous reckoning. I had finally pinpointed what I’d always deeply known, and it took the terrible nadir of a chemotherapy night to clear out any remnant of deluded optimism. I was an awful person—truly bad to the core. That was the reason. There was just no other explanation possible. They’d never call. They’d never come.
Still lying on the sofa, I propped myself up and took a good look around. The door to my studio was ajar, and I noticed my oboe resting on the desk. Cane shavings littered the floor. Music volumes sat stacked on a bookshelf. A metronome, a sharpening stone, dozens of reed knives, boxes of French tube cane, and all the detritus of the life of an oboe player—the contents of that room represented everything that had somehow kept me alive or simply sane. Or so I’d thought. I ruefully shook my head in disgust for deluding myself with useless feelings like hoping and wanting; for thinking that words could somehow help me. And for the first time in my life, with my fresh evaluation of who and what I really was, I even questioned the power of music.
With no strength in my thin neck tendons, my bald head dropped back, and the tears came, rolling down the sides of my cheeks. I silently sobbed with my mouth open in what must have been a ghoulish expression—an Edvard Munch scream, soundless. Willing myself to regain control, I choked the ache back and swallowed my misery. All I wanted to do was sleep or go numb. Either way, somehow, I went under.
At 6:00 a.m., the day was finally breaking. The sky outside my window had taken on a pink cast—the cusp of a red dawn. Birds were beginning to sing their wake-up song in spite of an anticipated downpour. My feet felt for the rug, and I dug my toes in. I leaned forward, gripped my head, rubbed my hands into the exposed, odd skull skin, and resolved to take a new course of action. I would personify with great precision the woman my mother, my father, and my sister believed me to be—a woman who couldn’t be loved, a woman not deserving of any words. But to do this I’d need to feel much less, care very little, and rid myself of all the red inside my body. I knew just how I’d do this: I’d slice up my heart, bleed it dry, then rip it to tiny shreds until it floated away with the storm that would come with the bright red morning. No one would ever enter my heart again. I’d lock it up in a dark, airless room where the music of words would not resonate within and the color red could not penetrate the walls. And I’d kill off my bloody red heart to do it.
Oh, Donna, let’s dance the last dance.
Black
Change is transformative but elusive, like a vague sensation traveling through your mind or body during a specific moment. You may notice that the earth has measurably slowed, or, conversely, the moment might feel like a fleeting gesture, an electrical spark that is quick and harsh but memorable. A shift into new territory, through a life event or a performance, is a far-off goal, never to be fully attained, because you never completely know yourself. It’s only through mighty, wearying struggle that you begin to discover a tiny piece of who you are. Where your guts truly reside. That path becomes crystal clear not in what you can do but in what simply cannot be done.
So you sense the universe spinning in black space, out of control, whipping back and forth with unchecked abandon. This energy moves closer to earth; its frenetic movement slows a bit and becomes regulated. It becomes the orbiting of the sun and the moon and the earth. The wind, sea, and tides take over, re-creating this undulation on the planet. The final point of contact is you. You start it all over again with what you create, and that creation is tossed back up, projected into the infinite universe. Who ultimately knows what happens to the sound of an oboe, or Kirsten’s voice, or Donna’s last dance, or the red of a dawning day?
Emily
WATER SLUICED DOWN my back. Turning around, I stuck my face directly in front of the sharp pinging beads of water. My nude skull was covered with soap. In spite of being bald, I continued with the futile routine of shampooing. I took a deep breath, held it in, and braced myself. Then I twisted the hot handle off, and the water went ice cold. It was torture. I imagined that a cold rinse at the end of my morning shower would ener
gize me after the previous night of terrible reckoning. I needed a distraction from my full-frontal sadness.
I stepped out of the shower, had a big shiver, and caught a glimpse of my dripping body in the mirror on the back of the bathroom door. With my nakedness reflected back at me, how could I not notice that even though I’d lost weight during my treatment, my face was puffy and my belly had developed a new, unattractive paunch? It might have been attributable to lack of exercise; I’d been a runner before the cancer diagnosis. But not now. The ongoing treatment had left me beyond exhausted, achingly sad and now disfigured.
The most disturbing feature I saw was my right breast. It was smaller and higher than the left. Size didn’t matter, but I didn’t particularly care for this lack of symmetry. Worse, the penguin-beak scar was still there. Over the years, that wound had faded to a wan dot, so that I’d have to search a bit to find its residue. But now the memento was sitting right next to a fresh scar, which brought it back to life and into stark relief.
As the cancer treatments plodded on, I looked forward to the day when my body might gather itself up, sprout hair on my head, and, I hoped, grow healthy cells. But for now, the disease forced me not only to face the painful realities of my family but also to look at myself—my actual body—and examine the collateral damage every single day. And the truly difficult part was the uncomfortable nexus of my cancer experience: how I saw myself as a woman, the need to finally acknowledge the iceberg I had been living inside of for most of my life, and the awareness of who had embedded me there.
The Skin Above My Knee Page 18