Fallen: A Trauma, a Marriage, and the Transformative Power of Music (12 page)

Eli was here today and you squeezed his hand too. You’d be proud of him. He’s scared but he’s holding strong. Maybe too strong. He doesn’t know how to feel sad. Not being sad, I think in his mind, is somehow a testament to your strength. He’s angry, though. Your mom has taken some pictures of you and he would like to smash the camera. He’d like to punch the next nurse who pokes or prods you. He’d like to pull out the tubes and knock over the machines and pick you up and carry you to the ferry. Stomp his feet and say, Enough, now! Make this stop! Let’s go home!

You expressed anxiety about the right side of your face, rubbing it. You said—squeezed—that it didn’t hurt but you were worried. You said the trach hurts, but when I explained we needed to put it in to remove the intubation tubes, you raised my hand to your lips and kissed it.

It is a miracle to me, that kiss.

THIS IS A
day of such great relief. Even though long stretches of silence remain, there is something so present in Simon’s gestures. His right hand, eloquent and loving, reaches up to my face or rubs my back when I stretch in a way that tells him it is sore. I feel today that he is here with me, really here, really him.

Late in the afternoon I join our gathered friends in Sassafras. Hungry for the first time in over a week, I cut large slices of rugged cheddar—sweet and salty, smooth and granular—and pass it around.

LORNA’S EXPERIENCE OF
the tracheostomy day is different from the one I share with Emily. Simon is being taken into surgery when she and Marc arrive in the morning, and she is horrified.

“Why is a trach necessary? He was taking long, slow breaths yesterday,” she says. “I told him, ‘If you take long, slow breaths, they will take the tubes out.’ I told him that and he did. He was responding. He was taking long, slow breaths.”

I outline what the trauma doctor explained the night before, but Lorna won’t—can’t—hear it.

“He was breathing on his own,” she insists. “I would never have okayed it. They could give him an oxygen mask if he needed help breathing. Hospitals perform trachs the way they do
C
-sections. Most of the time it’s not even necessary.”

I too am horrified. I had thought that Lorna and Marc would be pleased with this progression. I wonder if part of her reaction is due to shock that Simon has returned to surgery yet again and her inability to control that event. Maybe she would feel differently if she had been involved in the decision. In hindsight, I probably should have called last night before signing consent, and consulted her and Marc. But then again, given her reaction, I am also relieved that the decision wasn’t up for debate.

Later, when she sits with Simon, he touches the trach tube with his right hand, his face sad and questioning, and she feels as if she has betrayed the promise she made yesterday that the tubes would come out if he continued to breathe slowly and steadily. A nurse comes in to wash Simon’s head and hair. Lorna watches, horrified, as the nurse proceeds to scrub vigorously, moving Simon’s still swollen head up and down. After unending days and nights of focused attention on keeping his head as still as possible, it is shocking. Traumatized, Lorna returns to Sassafras, where Emily, Marc, and I sit with Jay Johnson, the drummer for the Precious Littles.

“That bitch,” she says, breathing fast and shaking visibly. “She was moving his head like this.” Her hands jerk up and down. “He’s on spine precaution! How can she not know he’s on
C
-spine precaution?”

I don’t know what to say. The
ICU
staff have been so exacting and attentive to every beat, breath, chemical shift, or electrical pulse in Simon’s body that it is hard to believe a staff member would treat him so carelessly. There is only now, this very day, a small bloom of hope opening in my heart that maybe, with their careful ministrations, they have actually saved his life. Yet Lorna’s rage is undeniable.

“I just want him to wake up and get all those tubes out. Have a cup of coffee,” she continues. “Coffee would help. He always needs coffee to wake up.”

Again, none of us know how to respond. Marc puts his arm around her shoulder and she leans into him. Jay tells us that over twenty-five years ago, after a serious accident on his bike, he was in that very same
ICU
and then was transferred to the spine ward.

“The hardest part,” he says, “was having other people take care of your body.”

“I don’t think he even recognizes me,” Lorna says. She pulls out of Marc’s embrace and puts her hands to her face, weeping. “I don’t think he even knows who I am.”

Lorna’s anguish reminds me once again of Joan Didion. When her daughter, Quintana, was recovering from a serious bleed in the brain, she too wanted to refuse the tracheostomy procedure. She writes:

In fact I had no idea why I so resisted the trach.

I think now that my resistance came from the same fund of superstition from which I had been drawing on since John died. If she did not have the trach she could be fine in the morning, ready to eat, talk, go home. If she did not have the trach we could be on a plane by the weekend. Even if they did not want her to fly, I could take her with me to the Beverly Wilshire, we could have our nails done, sit by the pool...

If she did not have the trach.

This was demented, but so was I.

I THINK LORNA
is a little demented, but that is understandable. Being Simon’s mother is different from being his wife. Simon and I wrote our own eclectic marriage vows, but, essentially, we echoed the standard marital contract: to love and care for one another in sickness and in health. This, then, is my chosen role, my primary focus: to love and care. As a mother, the central directive, however impossible, is to protect your child. And that is impossible now. Lorna cannot, no matter how much she fiercely wills it, protect Simon from the reality he is about to wake to.

SIMON’S RIGHT HAND
talks to my body. He reaches for the spot behind my ear where for years he has drawn tiny half-moons late at night to help me fall asleep. He reaches for the exact cranky spot in my back, the place where he has smoothed Traumeel countless times into feverish muscle. He reaches even for the curve of my rump, demurely drawing away if a nurse enters the room. His fingers feather over the tops of his legs, tapping his hip bones and then, more insistently, over the top of his thighs, asking a question about the silence in his body that I cannot yet answer for him. But he is here with me, all of him, embodied in his active right hand.

THE PINEAL GLAND
is small, reddish-brown, and pinecone-shaped and is attached to the roof of the third ventricle. It secretes melatonin, a hormone that helps regulate the body’s biological clock by setting our sleep and wake cycles. It is this small, unassuming gland, centrally located in the ventricular system, that René Descartes claimed as the soul’s conduit to the body, the dividing line in his mind–body dichotomy. Swaying in a sea of cerebrospinal fluid, the small movements of the pineal gland—according to Descartes—regulate the flow of animal spirits back and forth from the transcendent, immaterial world of the mind to the mechanical and mortal structure of the brain.

Although Descartes’ theory of the pineal gland as gatekeeper between parallel states was largely discredited in his own time, his division of mind and body has exerted a long and troubling influence on Western society. For those of us, bookish by nature, whose inner fantastical world is vast and varied and who experience a sensation that our inner world runs concurrent to the day-to-day operations of the larger, outside, physical world, often with only occasional points of intersection, it is no great leap to imagine the impetus that propelled Descartes to differentiate between these two (often competing) realities. Still, as a young undergraduate, I, like my peers, rejected Descartes and his brand of dualism, with an ardor and forcefulness usually reserved for the villains and villainous acts of history. But now, sitting beside Simon, I find myself wondering if the mind, the so-called ghost in the machine, is truly a more ephemeral and transitory entity than I could have ever previously imagined. Where does the brain end and the mind begin? Is it possible, I wonder, that the mind, or a portion of the mind, can exist outside the brain’s bowl of curds?

I ask this question because I believe that in my interactions with Simon’s right hand, I am connecting with his mind. When I want to communicate with him, my first instinct is, predictably, to look into his eyes, but for the most part they remain closed. When they do open, they are unfocused and project only a mute panic: his right eye is swollen in a thin squint while his left eye bulges, neither working in concert with the other. It seems he is unable to move his mouth in the shape of words. Perhaps he is also unable to find them or think them. But his right hand? His right hand knows what it’s talking about.

WHEN EMILY SITS
beside Simon at night, she sings. Most often, she sings Taj Mahal’s “You’re Gonna Need Somebody on Your Bond” and the Beatles’ “Blackbird.” Occasionally she sings an a cappella lullaby, “Golden Cradle,” from an Emmylou Harris Christmas album Simon loved to hate, complaining outrageously anytime his sister played it over the holidays.

Tonight, her singing of “Blackbird” is interrupted when the beeps on the monitor indicate that Simon’s heart rate is escalating. He starts pumping his right hand in a gesture she interprets as meaning terrible pain. She calls a nurse, and a dose of morphine is administered. As Simon’s heart rate decreases, she tells him she is going to sing him “Golden Cradle” in the hopes that it will be soothing and will help him sleep. But if it bothers him, he should raise his hand and she will stop.

Before Emily can finish singing the opening line of this sweet, tender song, Simon’s hand shoots up, the timing so perfect Emily knows he is poking fun at her and her love of Emmylou. It is the first time Simon’s right hand has directly communicated with her, and, fittingly, it is a joke.

She laughs out loud. And doesn’t sing any more Emmylou.

AT NIGHT, SITTING
beside Simon, I often find myself thinking about Jill Bolte Taylor’s
TED
talk, the one Simon and I watched just before his fall, the one where she held aloft a disembodied brain. In my memory the image of the brain takes on a distinctly animal-like quality: Jill might have been holding in her hands a rare and genius tree sloth or some variety of dynamic, long-tailed hedgehog, a much-loved but only partially domesticated and ultimately unknowable beast. I remind myself that her words, her story, illustrated an important point: the brain, that unknowable beast, with its origami folds and wrinkles, its faster-than-thought tracts and vast neural network, is resilient.

But as the child of a social worker and through my work as an advocate for adults with disabilities, I have plenty of firsthand knowledge that some brain injuries are profound and long-lasting. “Profound and long-lasting”—Dr. Griesdale’s exact words. I know what that means. I have met, worked with, and cared for people with profound and long-lasting disabilities. In my life the closest I come to religion is my belief that a society is only good and strong insofar as it recognizes the worth, the inherent humanity, of its most vulnerable members. But facing this new reality, the possibility that Simon will wake up to a life with a profound and long-lasting brain injury, I am filled with a boundless horror and grief, emotions that are complicated by the snaking sense of shame I feel at experiencing them: Drooling Simon. Damaged Simon. Dumb Simon. Through all my years of advocacy work, it seems I have never really understood what is now a simple, basic, disgraceful fact: the significant reduction of a meaningful level of consciousness is a fate worse than death.

I push these thoughts away, over and over again, and return to the image of Jill Bolte Taylor’s resilient and mysterious beast, and it acts as a kind of mental balm. I buy her book and, as I have done throughout my life when the problems of the world are too big to tackle, I start to read. As any unrepentant lifelong reader knows, good books are journeys, quests, vacations from the everyday, where, if we are lucky, we will discover as many interesting questions as answers. It is true: sitting beside Simon’s bedside, I am oversaturated with questions right now, most of them too big and scary and amorphous to say out loud, but reading
My Stroke of Insight
helps—if not with finding answers, at least to give some of the questions a shape and form.

What is thought? Can it be located anatomically, in a specific structure of the brain or elsewhere in the body? Does it leave a physical trail in the tissues of the brain? Can thought be dissected? Deconstructed? Rebuilt? Can it be healed? Can Simon’s thoughts heal? These aren’t new questions; they have been around in one form or another since the Incan priests first sharpened obsidian flints in preparation for a trepanation ceremony. And the answers, throughout history, have depended greatly on where and when and who was asking.

During the Enlightenment, beginning roughly in the latter half of the seventeenth century and culminating at the end of the eighteenth as the French Revolution ebbed and flowed in the bloody streets of Paris, the twin values of information and communication reigned supreme. The publication of Newton’s
Principia,
in 1687, marked a profound shift in thinking—the whole natural world, humans included, was subject to his laws of motion. Both telescope and microscope were invented, dramatically widening the depth and breadth of the universe. The popularization of the printing press was responsible for an unprecedented circulation of culture across all levels of society. Bach, Handel, Haydn, and Mozart became the chamber music rock ’n’ roll stars of their day due to the patronage of a growing bourgeoisie who were willing to pay to have music moved from the courts of kings into their own domestic spaces. Denis Diderot’s monumental
Encyclopédie
aimed to change common modes of thought by compiling all the world’s knowledge in a single compendium that could be disseminated to the general public and future generations. Benjamin Franklin signed the
U.S.
Declaration of Independence and continued to indulge in the eccentric habit of flying a kite during lightning storms. Mary Shelley’s Gothic monster, brought to life by a volt of electricity at the dawn of the nineteenth century, was the anxious bastard child of Dr. Frankenstein’s Enlightenment ideas and ideals.