The Still Point Of The Turning World (11 page)

12

A
t the end of March I traveled to Boston to attend the National Tay-Sachs and Allied Disorders Association family conference, where I met other children like Ronan and other mothers in my situation. I stayed with friends I’d known for fifteen years. In the mornings I woke to the sound of Weber’s three-year-old daughter, Violet, knocking on my door. In the afternoons I held the hands of kids with Tay-Sachs, Sandhoff, Canavan and other terminal diseases. I missed Ronan and longed to hold him. On the way to the airport after the conference ended, I told my friend Kate that it was almost impossible to imagine feeling this way forever, this ache. She put one arm around me and drove with one hand.

After a brief scare over the lack of a ticket at Logan, and a very nice woman who finally fixed the problem for exactly $967 less than she was supposed to, I was waiting at the gate when a woman began crying hysterically and screaming, saying
You can’t do this to me again. You’re ruining my life. Oh my God, I can’t believe this.
I literally thought somebody had died. As it turned out, the woman had been told she needed to check her luggage because the overhead bins were full, but the last time she’d flown the airline had ruined her laptop. I had zero sympathy for her as she boarded the plane in a teary huff. I watched her sit down in the row in front of me, still squalling, still hysterical, and thought about offering her a Xanax or perhaps the weekend schedule for the Tay-Sachs family conference: symptom management, secretion control, choosing an end-of-life plan, memorials, support groups for grieving parents at different stages of a terminal disease.

The man sitting next to me pointed at the back of her seat and mouthed, “Freak.” I nodded. The woman sitting next to her had a gentler response. She asked the woman if she was okay, handed her a tissue, and then the real story came out. For years the crying woman had been homeless, jobless, and her computer, her laptop, the one thing that had allowed her some freedom, some ability to look for jobs, had been ruined when she flew home for a family funeral with money a friend had given her as a gift. The man next to me was still chuckling, but I was not. I was no longer in the mood for his jeers or my complicity in them moments before. I thought about what people might say about Ronan at the later stages, some of the names they might call him, the way I had used the word “retarded” in the past; the way people regard difference, including mine—staring at me when I wore shorts, letting their jaws drop at public pools when I took the leg off, the great anxiety about the body during any sexual encounter. The great “reveal” of showing another person
I am not what you thought; I am this.
And I thought,
No, she’s not a freak; she’s someone’s
child, and beyond that she’s a person.

Four hours later and the air on the jetway was like heavy cake. Texas. The Dallas airport again, desperately trying to be like Heathrow: same font used for the signs, same glossy stores lining the terminals, arrows directing you to the “toilets” instead of the restrooms. Through the windows of the aboveground Skylink train whisking between terminals, the lights of the city dripped in the thick sky. I sat near the front of the train as if it were a carnival ride, and I thought about all the sick kids I’d met during the weekend in Boston, where I’d held so many tiny hands.

In Santa Fe one morning I was becoming irritated by the loud group of retirees sitting next to me at the coffee shop when one of the men stood up and said, “Okay, it’s chemo day for me, so I’ll see you later!” and strolled away. We know so little about people’s lives, about what they go through. At least at the family conference, where we’d huddled together and tried to figure out how to manage and eventually eliminate all these terrible insane diseases, everything was out in the open—all the misery, gallows humor, joy, fear, dread. As one mother said, “People talk about living each day as if it were your last, but that’s a completely exhausting way to live.” This desire to pack the days full of meaning and memory was another kind of ambition: there was always something more you could say, do, become, always a reach for the “what next?” Sitting with Ronan on the couch I often thought
,
How can I make this moment more precious?
and then I’d realize with a sense of panic that no additional meaning needed to be sought or found. This was all there was.
But still,
I would think,
What if I can’t remember the way his hands feel, his hair. What if I forget how he smells? The sound of his laugh? The shape of his two front teeth?
Time was both too contracted and forever seeming. (From Pablo Neruda:
“I don’t have enough time to celebrate your hair.”
)

There are many horrible things about living with a terminally ill child, but the hardest is the way in which our parenting approach approximates an old archetypal story but without the redemptive ending: when your child is dying and there is no treatment or cure, it feels as though you are sending him or her out into the wilderness, only there is no returning from this particular exile. Nobody is passed over. Nobody is freed. The faces of those children and their parents were brave and beautiful because they were singular faces, unique. The parents knew their children’s bodies and needs on every level; they learned to read the subtlest cues; they found moments, even in the later stages of the disease, when elements of the child’s personality burst through.

And now I knew their stories, their desperately human stories that are the worst kind of sad, but in some moments, absolutely laugh-out-loud funny: one little girl with Tay-Sachs who, until the end of her life, always had a grumble for the most problematic family member; another little boy who used to laugh at inappropriate moments and make everyone else laugh, too, and when they hadn’t expected it. What these parents did—what Rick and I did—was as sacred as it was misunderstood, and very often ignored.

There was something profound and liberating about naming the unspeakable, giving it voice, letting it live in a room, stretch its legs, burp, be obnoxious. I could sit in a support group and talk about “growing into a diagnosis” and possible approaches to pulmonary care. I could discuss studies proving that when people can no longer eat, when their bodies shut down, there occurs an incredible physical euphoria that is the opposite of pain or discomfort. And then someone would tell a joke. And then someone would tell the story about the final days with his or her child, and the importance of hospice care and night nursing. He might erupt into tears or she might speak carefully in a stoic, controlled voice. Sitting in circles, loving their kids, suctioning lungs or feeding or rocking or comforting, all of those people were children once, they were or still are somebody’s child and then they were parents in a terrible situation and they were fierce. Their children had the most powerful claim on them. And all of them had a claim on me.

This is it: having a terminally ill child has, in many ways, ruined my life because Ronan will die. But talking with these parents helped me strategize about how I might survive his death; with these moms and dads I discussed practical considerations (doctors, care options, alternative treatments) as well as all the impractical considerations (how to be strong and hopeful in the face of hopelessness): the steep learning curve of all I’d need to learn. More than anything else, however, each face in that circle, infant or adult or otherwise, taught me that learning how to live with death—that final wilderness from which none of us returns—was also about learning how to
live
.

13

God resolved at the outset that He wanted every human to participate in the afterlife. But the plans weren’t thought out to completion, and immediately He began to run up against some confusion about age. How old should each person be in the afterlife? Should this grandmother exist here at her death, or should she be allowed to live as a young woman, recognizable to her first lover but not to her granddaughter?

—David Eagleman, “Prism,” in
Sum: Tales of the Afterlives

A
fter I returned from the conference in Boston, I woke up and held my son for a long, long time. I’d missed him terribly for those three days. Sitting on the couch, Ronan and I flipped through his art cards from Dr. Janet—black-and-white sketches of a panda, a ring-tailed lemur, an anteater, a penguin—as I composed a long-overdue list of thank-you notes that needed to be written for his many birthday gifts. His spasticity had worsened, his hands springing together when he was on his back as if he were holding magnets in his palms or moving under water. When I thought about the effort it took for him to reach out and turn the pages of a soft book, I wanted to squeeze him and never let him go. But I let him grunt and reach because it was what he wanted to do. Even a dying baby can have ambitions of a kind, and I allowed him his.

Sometimes it felt possible to exist in those seemingly impossible dualities, in those moments I found myself making desperate wishes that my son could be healed. I would give anything, do anything, to make him better, to make him well. I would give my life—anyone’s life, actually—and found myself wishing that I could negotiate some kind of trade.

What would healing look like for Ronan? Was it already taking place in some way that extended beyond the powers of imagination and simple if ardent belief? What does it mean to “be well”? Our culture offers myriad suggestions for being “healthy,” but the accompanying images (for the most part) are ones we always see: thin, young, lacking a visible disability, white. Does being healthy mean looking like a buff, blond cheerleader? How is wellness different from health? Who decides what healing is? What does it mean to be whole?

I thought about Michael W. Smith, a singer songwriter popular among the evangelical Christian group to which, in junior high, I briefly belonged. I had just moved to a small town in Nebraska where all the girls had grown up together. I was friendless, needy, hopelessly nerdy, and therefore easily roped into attending weekly prayer meetings and writing daily journal entries about “how Jesus works every day in my life.” Unfortunately, my entries, made faithfully, were not well received.

Our leader, a youth pastor named Jeremy, was a bespectacled, balding man in his early thirties who preached to his captive audience of fourteen-year-old girls teetering on the edge of puberty about why it was important to abstain from sex “until one is married,” and why
The Simpsons
was an evil television show to be avoided no matter what, “even if it makes one look uncool.” In one of our “private growth meetings,” a description that still makes no sense to me (what were we expected to grow out of or into?), which consisted of Jeremy’s asking me questions about my faith (“Do you notice our Lord and Savior moving in your heart each and every day, and do you thank him?”) and my responding with what I thought were the appropriate answers (“yes” and “yes”), he flipped through my journal and sighed. “They’re not supposed to be stories, Emily. They’re supposed to be prayers. There’s a difference.” Oh.

I was no good at prayer, it seemed, in written form or otherwise. The prayer circles, when we girls stood huddled together, swinging our arms and chanting—
Jesus, I just hope that you’ll just heal us and just please please please make us whole and free us from sin and make us pure. Oh, Jesus, please just take pity on us, we sinners, for all of our trespasses—
put me on the edge of giggles and I could not keep my eyes closed as instructed by our “leader,” a droopy-faced girl with bleached hair and a pair of shoes to match each of her neon-colored outfits. I felt vaguely embarrassed by these emotional outpourings. Couldn’t we just sit down and pray quietly like Lutherans? But no, these upstart Christians were not the demure churchgoers of my early childhood; they were
evangelicals,
a new word to me, and I wanted friends, no matter how they referred to themselves. So I wrote in the journal and I swung my arms and asked to be saved and earnestly scrunched up my face with the others. During this period I also attended Christian rock concerts, even though the melodies were horrendous and the lyrics even worse.

Michael W. sang a song about a girl called Emily, a schmaltzy, cloying song.
You’re an angel waiting for wing
s (meaningful pause),
Em-il-y.
During the song the girl sitting next to me (Ashley? Katie?) turned to me and said, “This song is about you, Emily.” Her eyes were shining.

“Uh, that’s my name,” I said, shifting in my bleacher seat.

She put her hand on my knee. Her white beaded “promise bracelet” that indicated her commitment to wait until marriage to have sex dug into my thigh. “Someday you’ll go to heaven and be healed, and then you won’t be crippled anymore.” I imagined myself as a celestial supermodel, all arms and heavily mascaraed eyes and flowing hair, strutting down some heavenly cloud-strewn catwalk. And then I really did laugh, so hard that it looked as if I were crying, and she put her arm around me and we rocked from side to side.

“I know, I know,” she cooed, and we swayed together for the rest of the song as she softly muttered, “Heal us, Jesus, help us Jesus, save us, Savior, please.”

Years later, I was still stumped. Did being healed mean being made to look “normal,” in the sense that I’d have my leg back and look a particular way? I found the image of myself equipped with two “real” legs, running around in heaven doing who knows what, patently ridiculous. Wasn’t heaven about transcendence? Wasn’t the physical body rendered useless or unnecessary because it was just a vessel for the soul inside, which was the thing that actually needed saving? This was how I’d been taught to interpret the biblical passage where Jesus appears at the empty tomb and instructs his grieving visitors not to worry. He was fine! His soul was up in heaven with the Father and he was beyond all bodily concerns, the horrors of the crucifixion already a dim memory. I imagined myself as a kind of holy phantom rushing around like wind in the clouds, my soul united with all the other souls that had gone to the right place, all of us bodiless and free. This was my picture of heaven as a child, and now I felt confused and wanted to talk about it.

I asked our youth director about this issue at one of our “growth” meetings. He blinked at me. “Heaven is the resurrection,” he stated firmly.

“With or without the body?” I asked, because I was ready to chuck mine. I could have debated this issue with my pastor father, but I was a teenager and therefore convinced that he knew absolutely nothing about anything.

“It’s a resurrection,” he repeated. “It means you’ll be perfect.”

“You mean normal?”

He blushed. “Yes, that’s right,” he said finally. He handed my journal back to me. “You’ll be perfectly normal. Now, isn’t that something to look forward to?” Resurrection=Perfection? Sure.

Flash forward sixteen years. I was a writer-in-residence at a college in rural Pennsylvania. On this particular autumn afternoon I was sitting in a living room with a group of divorcées ranging in age from thirty to sixty-five and learning to practice the healing art of Reiki, level one. Reiki is a system of energy healing that involves the laying on of hands at certain points (face, chest, shoulders, et cetera) on the patient’s body. The practitioner’s palms channel healing energy to the patient that, far from being prescriptive, has no predetermined end point but is meant simply to serve that person’s “highest good.” Several months before, I’d seen an ad for a Reiki healer in the local grocery store, figured I could use some healing and became instantly addicted. After weekly treatments I left my practitioner’s small house perched at the end of a gravel road feeling electric, euphoric and weirdly complete.

“I can feel your whole left leg,” my practitioner would say, and I believed her. “It gives off its own energy, even though it’s not there.”

“Like a phantom limb?” I asked.

She nodded. “Only without the pain attached. No throbbing or heat. Is it throbbing?” It was not. No wonder I felt so fantastic.

During our first training session, the Reiki master, a tall blond woman from upstate New York, was educating us about the Reiki notion of wholeness. “See this,” she said, pointing to the image of a torn leaf. Where the other half of the leaf had broken off she carefully drew a dotted line. “In Reiki, everything is whole, or at least holds the whole within itself. In other words, all of you are already perfect.” A few women started to cry.

I raised my hand. “So healing could mean something unexpected. I mean, it wouldn’t necessarily look the way we think it should.” A small water fountain trickled in the corner of the room. Red and gold leaves fell past the window outside. I tried to imagine myself as an uncrippled angel, spiriting across the lawn.

The master nodded. “The idea isn’t about achieving wholeness, but about what the body of that person needs, and this wisdom is housed exclusively within the body itself.”

“What about curing things, such as ailments or pain, or what about cancer?” one woman asked.

Our master motioned one of the students over to the table and asked her to lie down. “Reiki energy doesn’t save people in the way we’ve come to understand it according to Western medical practices,” our teacher cautioned. “It simply helps the body do what it needs to do.” In the case of her father-in-law, who’d had stage 4 cancer, the healing energy allowed him to die peacefully in his home. “I treated him every day,” she said, “until the very end. Dying was what his body needed to do.”

“So it helps with hospice care?” one woman asked, her voice trembling. She had just been left by her husband of thirty-seven years for a twentysomething massage therapist and now her mother was dying. She was learning Reiki to try to ease her mother’s passage when all conventional methods of comfort had failed. The master hovered over the woman on the table, inhaled and placed her palms on her shoulders. “That’s exactly right,” she said. The woman who had asked the question began to weep quietly.

The Reiki method of healing trusts the body to give itself what it needs with the practitioner’s help, and the healing is directed to moment-by-moment experience, not to an end goal. There’s an instructive parallel here in terms of writing, which has the cathartic power of a therapeutic practice but lacks the ultimate goal of traditional therapy: wellness, emotional regulation. As I drove home from those Reiki treatments down the rain-soaked rural Pennsylvania roads, I felt calm, complete and content. Vibrant yet settled. A kind of healing, then, but not one that involved a dramatic physical transformation or the sudden adoption of a new body. A new leg did not miraculously sprout forth to help me start running heavenly marathons. It was much more complicated and interesting than that.

When I treated the woman whose mother was dying, I felt the change in energy as I worked on different parts of her body. Her forehead and shoulders were cool, but there was an unmistakable heat all around her heart. After the treatment she seemed relieved, and when she treated me, I also felt a great lift, a shift into a surprising but gentle equilibrium. Nothing was “fixed,” but the air felt qualitatively different. The room felt charged. Could these shifts be proved diagnostically, under a microscope or in a therapy session according to some other metrics? No, probably not. But was healing taking place? I thought so.

What did this mean for Ronan? I gave my son regular Reiki treatments and massages. He saw his acupuncturist at least once a month and a physical therapist each week. In April, Ronan saw a Japanese sensei. This renowned teacher of acupuncture treated both of us in a large sunlit room that reminded me of a church fellowship hall. Lying on tables organized in careful rows were people in various stages of partial undress. Above them, hovering, touching, laboring, were three or more acupuncturists taking pulses, touching feet, inserting needles and quietly consulting about the diagnosis in urgent whispers.

A crowd of people gathered around Ronan. He squawked, loving the attention (he inherited more than just the Tay-Sachs gene from me). Tiny tools that resembled metal toothpicks were used to stimulate points in his chubby knees and along his stomach and back. Ronan played with a colorful blue and gold pillow as the sensei scraped his meridians and diagnosed him: a weak spleen. But, he said, “he tells me he’s happy.” Ronan answered this pronouncement with a happy shriek. “Gee, gee, gee,” he chattered, making conversation.

When it came time for my treatment, three different pairs of hands massaged and needled and diagnosed. “She’s strong but fragile,” I heard someone say. “Here, work on this meridian.” When there was a change sensed in the body, the diagnosis changed and the strategy shifted. Each moment was taken individually. The end goal? To enable the body to do what it needed to do, whatever that might be, in that particular moment. In other words, no breaking free of the leg braces à la Forrest Gump, no miraculous healing of a disease that in turn suggested an open landscape free of pain, a future that was fixed and without struggle.

In both Reiki and acupuncture, there is no effort to make anyone “whole” or “better” in the way my friend at the Christian rock concert had understood it. My youth pastor led me to believe that my real life, my perfect life, would begin after my death, and that what I did on earth was merely a preparatory journey for that final transformation. I thought about the call and response during Easter Sunday services: “He is risen!” “He is risen indeed!” For Reiki masters and acupuncturists of many different lineages, the goal is comfort in the moment, now, here, in your body. The second approach, especially in light of my experience of parenting Ronan, made a lot more sense.