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Rebellion, Part 2



 

I took Lulu to a salon the day after she cut her hair. We didn’t speak much in the car. I was tense and had a lot on my mind.

“What happened?” the hairdresser asked.

“She cut it,” I explained. I had nothing to hide. “Is there anything you can do to make it look better while it grows out?”

“Wow—you did a real job on yourself, honey,” the woman said to Lulu, eyeing her curiously. “What made you do this?”

“Oh, it was an act of adolescent self-destruction aimed primarily at my mother,” I thought Lulu might say. She certainly had the vocabulary and the psychological self-awareness to do so.

But instead, Lulu said in a pleasant voice, “I was trying to layer it. But I really messed up.”

Later, back home, I said, “Lulu, you know that Mommy loves you, and everything I do, I do for you, for your future.”

My own voice sounded artificial to me, and Lulu must have thought so too, because her response was, “That’s great,” in a flat, apathetic tone.

Jed’s fiftieth birthday came up. I organized a huge surprise party, inviting old friends from his childhood and every part of his life. I asked everyone to bring a funny story about Jed. Weeks in advance, I asked Sophia and Lulu each to write her own toast.

“It can’t just be tossed off,” I ordered. “It has to be meaningful. And it can’t be clichéd.”

Sophia got right on it. As usual, she didn’t consult me or ask my advice on a single word. By contrast, Lulu said, “I don’t want to give a toast.”

“You have to give a toast,” I replied.

“No one my age gives toasts,” Lulu said.

“That’s because they’re from bad families,” I retorted.

“Do you know how crazy you sound?” Lulu asked. “They’re not from ‘bad’ families. What’s a ‘bad’ family?”

“Lulu, you are so ungrateful. When I was your age, I worked nonstop. I built a tree house for my sisters because my father asked me to. I obeyed everything he said, and that’s why I know how to use a chainsaw. I also built a hummingbird house. I was a newspaper carrier for the El Cerrito Journal and had to wear a huge fifty-pound pouch over my head stuffed with papers and walk five miles. And look at you—you’ve been given every opportunity, every privilege. You’ve never had to wear imitation Adidas with four stripes instead of three. And you can’t even do this one tiny thing for Daddy. It’s disgusting.”

“I don’t want to give a toast,” was Lulu’s response.

I pulled out the big guns. I threatened everything I could think of. I bribed her. I tried to inspire her. I tried to shame her. I offered to help her write it. I jacked up the stakes and gave her an ultimatum, knowing it was a pivotal battle.

When the party came, Sophia delivered a minimasterpiece. At sixteen, standing 5’ 8” in her heels, she had become a stunning girl with a sly wit. In her toast, she captured her father perfectly, gently poking fun but ultimately lionizing him. Afterward, my friend Alexis came up to me. “Sophia is just unbelievable.”

I nodded. “She gave a great toast.”

“Absolutely . . . but that’s not what I meant,” said Alexis. “I don’t know if people really get Sophia. She’s totally her own person. Yet she always manages to do your family proud. And that Lulu is just adorable.”

I hadn’t found Lulu adorable at all. During Sophia’s toast, Lulu stood next to her sister, smiling affably. But she had written nothing, and she refused to say a single word.

I had lost. It was the first time. Through all the turbulence and warfare in our household, I’d never lost before, at least not on something important.

This act of defiance and disrespect infuriated me. My anger simmered for a while, then I unleashed my full wrath. “You’ve dishonored this family—and yourself,” I said to Lulu. “You’re going to have to live with your mistake for the rest of your life.”

Lulu snapped back, “You’re a show-off. It’s all about you. You already have one daughter who does everything you want. Why do you need me?”

There was now a wall between us. In the old days, we’d fight ferociously but always make up. We’d end up snuggling in her bed or mine, hugging each other, giggling as we imitated ourselves arguing. I’d say things totally inappropriate for a parent, like “I’m going to be dead soon” or “I can’t believe you love me so much it hurts.” And Lulu would say, “Mommy! You are so weird!” but smile despite herself. Now Lulu stopped coming to my room at night. She directed her anger at not just me but also Jed and Sophia, and spent more and more time holed up in her room.

Don’t think I didn’t try to win Lulu back. When I wasn’t furious or fighting with her, I’d do everything I could. Once I said, “Hey Lulu! Let’s change our lives and do something totally different and fun—let’s have a garage sale.” And we did (net earnings $241.35), and it was fun, but it didn’t change our lives. Another time, I suggested she try a lesson on the electric violin. She did, and liked it, but when I tried to book a second lesson, she told me it was stupid and to stop. Before long we’d be at it again, locked in hostility.

On the other hand, for two people who were constantly at each other’s throats, Lulu and I spent a lot of time together, although I wouldn’t exactly call it quality time. This was our usual weekend drill: Saturday: 1 hour drive (at 8:00 A.M.) to Norwalk, CT 3 hour orchestra practice 1 hour drive back to New Haven Homework 1-2 hours violin practice 1 hour fun family activity (optional) Sunday: 1-2 hours violin practice 2 hour drive to New York City 1 hour lesson with Miss Tanaka 2 hour drive back to New Haven Homework

In retrospect, it was pretty miserable. But there was a flip side that made it all worthwhile. The thing is, Lulu hated the violin—except when she loved it. Lulu once said to me, “When I play Bach, I feel like I’m time traveling; I could be in the eighteenth century.” She told me that she loved how music transcended history. At one of Miss Tanaka’s biannual recitals, I remember Lulu mesmerizing the audience with Mendelssohn’s Violin Concerto. Afterward, Miss Tanaka said to me, “Lulu’s different from the others. She really feels the music and understands it.You can tell she loves the violin.”

Part of me felt as if we had pulled the wool over Miss Tanaka’s eyes. But another part of me was filled with inspiration and new resolve.

Lulu’s Bat Mitzvah approached. Even though I’m not Jewish and the Bat Mitzvah was Jed’s terrain, Lulu and I went to battle here too. I wanted her to play the violin at her Bat Mitzvah. I had in mind Joseph Achron’s “Hebrew Melody,” a beautiful, prayerful piece that Lulu’s old friend Lexie had told us about. Jed approved; Lulu didn’t.

“Play violin? At my Bat Mitzvah? That’s ridiculous! I refuse,” Lulu said, incredulous. “It’s completely inappropriate. Do you even know what Bat Mitzvah means? It’s not a recital.” Then she added, “I just want to have a big party, and get lots of presents.”

This was said to provoke and enrage me. Lulu had heard me railing for years against spoiled rich kids whose parents spend millions of dollars on their Bat Mitzvah parties, cotillions, or sweet sixteen’s. The truth is that Lulu has a strong Jewish identity. Unlike Sophia (or for that matter, Jed), Lulu had always insisted on observing Passover rules and fasting on Yom Kippur. For her, even more than for Sophia, the Bat Mitzvah was an important event in her life, and she threw herself with a passion into learning her Hebrew Torah and haphtarah portions.

I wouldn’t take the bait. “If you don’t play the violin,” I said calmly, “then Daddy and I won’t throw you a party. We can just have a small ceremony—it’s the ritual that’s important, after all.”

“You have no right!” Lulu said furiously. “That’s so unfair. You didn’t make Sophia play the piano at her Bat Mitzvah.”

“It’s good for you to do something that Sophia didn’t,” I said.

“You’re not even Jewish,” Lulu retorted. “You don’t know what you’re talking about. This has nothing to do with you.”

Six weeks before the date, I sent out Lulu’s invitations. But I warned her, “If you don’t play the ‘Hebrew Melody,’ I’ll cancel the party.”

“You can’t do that,” Lulu said scornfully.

“Why don’t you try me, Lulu?” I dared her. “See if I’ll do it or not.”

I honestly didn’t know who’d win this one. It was a high-risk maneuver too, because I didn’t have an exit strategy if I lost.

 

Katrin

 

The news about Katrin’s cancer was unbearable for my parents. Two of the strongest people I know, they simply crumpled in grief. My mother cried all the time and wouldn’t leave her house or respond to calls from friends. She wouldn’t even talk to Sophia and Lulu on the phone. My father kept calling me, his voice anguished, asking me—over and over—if there was any hope.

For treatment, Katrin chose the DanaFarber/Harvard Cancer Center in Boston. We’d learned that it was one of the best bone marrow transplant facilities in the country.

Harvard was also where Katrin and her husband, Or, had studied and trained, and she still knew people there.

Everything happened so fast. Just three days after getting her diagnosis, Katrin and Or locked up their house at Stanford and moved their entire household to Boston (Katrin refused even to consider leaving her children behind in California with their grandparents). With the help of our friends Jordan and Alexis, we found them a house to rent in Boston, a school for Jake, and day care for Ella.

Katrin’s leukemia was so aggressive that the doctors at Dana-Farber told her she had to go straight to a bone marrow transplant. No other route offered any chance of survival. But for the transplant to be possible, Katrin had to overcome two huge hurdles. First, she had to undergo intensive chemotherapy and pray that her leukemia would go into remission. Second, if it did, she had to get lucky and find a donor match. For each of these hurdles, the chances of success weren’t great. For both to succeed, the odds were terrifying. And even if all that worked out, the chances of surviving the bone marrow transplant were even worse.

Katrin had two days in Boston before she checked into the hospital. I was there when she said good-bye to her children. She’d insisted on doing the laundry—two loads—and she’d laid out Jake’s clothes for the next day. I watched in paralyzed incredulity as she carefully folded her son’s shirts and smoothed her daughter’s bibs and onesies. “I love doing laundry,” she said to me. Before she left the house, she gave me all her jewelry for safekeeping. “In case I don’t make it back,” she said.

Or and I drove Katrin to the hospital. While we were waiting to fill out forms, she kept joking around—“Get me a good wig, Amy. I’ve always wanted nice hair”—and apologizing for taking up so much of my time. When we finally got to her hospital room—on the other side of a curtain was a deathly-looking elderly woman who’d obviously been through some chemotherapy—the first thing Katrin did was put up pictures of her family. There was a close-up of Ella, one of Jake at age three, and one of the four of them beaming on a tennis court. Although she looked distracted now and then, Katrin seemed completely calm and deliberate.

By contrast, when two medical interns—one was Asian, the other Nigerian—came to introduce themselves to Katrin, I was overwhelmed with indignation and rage. It was as if they were playing doctor. They had no answers to any of our questions, they twice referred to the wrong kind of leukemia, and Katrin ended up having to explain to them the protocol they needed to follow that night. All I could think was, Students? My sister’s life is in the hands of medical students?

But Katrin’s reaction was totally different. “I can’t believe that the last time I was in this building, I was one of them,” she said thoughtfully after the interns left, just a hint of sadness in her voice. “Or and I had just met.”

The initial few weeks of chemo went smoothly. As we’d seen with Florence, the effects of chemo are cumulative, and in the first several days Katrin said she felt terrific—in fact, more energetic than she’d felt in months because they were giving her regular blood transfusions to counter her anemia. She spent her time writing scientific papers (one of which was published by Cell while she was in the hospital), supervising her lab at Stanford long-distance, and buying books, toys, and winter clothes for Jake and Ella over the Internet.

Even after Katrin started feeling the effects of the chemo, she never complained, not about the Hickman line inserted into her chest that carried chemical toxins straight from a drip to her major veins (“Not bad, but I still can’t look at it”); or the shivering fevers she’d suddenly get; or the hundreds of injections, pills, and needle pricks she had to endure. All the while, Katrin sent me funny emails that sometimes made me laugh aloud. “Yay!” she wrote once. “Starting to feel SICK. Chemo is working . . . all according to plan.” And another time: “I am looking forward to the phlebotomist visiting me this a.m. This is what I am reduced to.” The phlebotomist was the person who drew her blood and told her what her blood counts were. And: “Able to drink clear fluids again. Going to try chicken broth.Yum.”

I came to realize that when I didn’t hear back from Katrin—when she didn’t answer my calls or return my e-mails—she was either violently ill, swollen up with hives because of an allergic reaction to a platelet transfusion (something that happened regularly), or sedated with painkillers to blunt some horrible new affliction. Her updates, though, were always light-hearted. To my daily “How was last night?” e-mails, she’d respond, “You don’t want to know,” “Not too bad but not great at all,” or “Alas, another fever.”

I also realized something else: Katrin was determined to live for the sake of her children. Growing up, she’d always been the most focused of the four sisters, the one with the most concentration. Now she devoted every bit of her intellect and creativity to the task of battling her leukemia. Trained as a doctor, she was completely on top of her own disease, double-checking dosages, reviewing her cytogenetic reports, researching clinical trials on the Internet. She loved her doctors—she was medically sophisticated enough to appreciate their experience, acuity, and good judgment—and they loved her. So did all the nurses and young interns. Once, an M.D./Ph.D. student doing a rotation recognized her name—Dr. Katrin Chua of Stanford, author of two papers published in the prestigious scientific journal Nature!—and asked her in awe for some professional advice. Meanwhile, to stay in shape, Katrin forced herself to walk around for twenty minutes twice a day, wheeling around the IV stand she was hooked up to.

I was in Boston a lot during the fall and winter of 2008. Every weekend, our whole family would go up—sometimes we’d make the two-hour drive to Boston immediately after Lulu and I got back from our four-hour trip to Miss Tanaka. Katrin didn’t care at all about having visitors herself—and after the chemo killed off her immune system, visitors were discouraged—but she was worried about Jake and Ella, and it made her happy when we spent time with them. Sophia adored her baby cousin Ella, and Lulu and Jake were best friends. They had similar personalities and looked so much alike, people often thought they were siblings.

Of course, we were all holding our breath for one thing: to see whether Katrin made it into remission. On Day 20, they took the critical biopsy. Another week passed before we got the results. They weren’t good—not at all. Katrin had lost her hair, her skin was peeling, and she had every conceivable gastroenterological complication, but she was not in remission. Her doctor told her she’d need another round of chemo. “It’s not the end of the world,” he said, trying to sound upbeat. But we’d done our research, and we all knew that if the next round didn’t work, the odds of Katrin having a successful transplant were effectively zero. It was her last chance.

 




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