The Council Of Dads Part 5

.12.

USE YOUR WORDS

LONG BEFORE I I HAD CANCER HAD CANCER, I had a secret game I played with myself involving my kids. It was a memory exercise. A way of cheating time. Basically it was an errand into the impossible: I tried to guess what they would remember.

We would be biking through the dunes, or planting flowers in the backyard, or dripping turrets onto sand castles, and they would be having the perfect reaction. They would be happy, or ignited by a new idea, or simply free of the gossamer of complications that ensnares childhood. And I would say to myself: This is the moment they will always remember. This is the experience that will mark this age forever. This is the moment they will always remember. This is the experience that will mark this age forever.

When I got sick, this game took on new urgency. Friends tried to comfort me: "Don't worry. Your children are so young, your illness will become a distant memory for them. After all, how many memories do you have from when you were three?" These comments were anything but comforting: If my children remembered little from these years, that meant, if I died, they would remember little of me.

Even more unnerving, now that I had trouble walking, we were restricted in the types of memories we could build. Left without legs, I fell back on their one true pa.s.sion. I turned to words.

One day a few months into my treatment, I invited Tybee and Eden into my bed. "How about a reading party?" I said. They squealed and returned with armfuls of their favorite books: Angelina Ballerina Angelina Ballerina, The Jellybeans and the Big Dance The Jellybeans and the Big Dance, Thesaurus Rex Thesaurus Rex. For an hour we were a dad's fantasy of a living library-all giggles, dramatic accents, concerned expressions, and throaty cheers. These weren't books as babysitters. These were books as bridges.

Somewhere in the middle, I closed a book and announced, "Girls, I want to tell you something." My voice got all drippy and earnest. "If you always read books, you'll always be happy." They nodded, repeated what I'd said, then returned to their books.

Suddenly that feeling came over me: This is it, This is it, I thought. I thought. This is the phrase they'll never forget. This is the one story they'll tell their first boyfriends when they're lying on the quadrangle and recounting their life stories. This is the phrase they'll never forget. This is the one story they'll tell their first boyfriends when they're lying on the quadrangle and recounting their life stories.

I started choking up. A day with cancer is a day with tears. But playtime was coming to an end, so I managed to wrangle their attention once more. "Thank you for Daddy time," I said. "And remember..."

I looked at them, hoping they would repeat my line. I wanted them to tell me we had been communicating. I wanted them to rea.s.sure me they'd always remember who I was.

"If you always read books...," I said, and it was Tybee who answered. "You'll always be smart."

Well, yes!

I laughed out loud.

WE WERE OVERWHELMED FIRST-TIME parents in the early hours after the girls were born. The initial days were a swirl of blockaded milk ducts, nonlatching mouths, and landfills of diapers. The biggest challenge we faced was not the lack of sleep or backlogged belches but the Olympian gymnastics of breast-feeding two newborns simultaneously. Linda could either feed them serially, which meant she was back on virtual bed rest, or use the "double football," in which she clasped a baby under each arm like an overeager running back. Neither worked very well. The upshot was we starved one and dropped the other in the first week. Our doctor was growing concerned about our f.e.c.klessness. parents in the early hours after the girls were born. The initial days were a swirl of blockaded milk ducts, nonlatching mouths, and landfills of diapers. The biggest challenge we faced was not the lack of sleep or backlogged belches but the Olympian gymnastics of breast-feeding two newborns simultaneously. Linda could either feed them serially, which meant she was back on virtual bed rest, or use the "double football," in which she clasped a baby under each arm like an overeager running back. Neither worked very well. The upshot was we starved one and dropped the other in the first week. Our doctor was growing concerned about our f.e.c.klessness.

Eventually we settled into an awkward pose, in which a feeding involved three adults. Linda provided the mise en place; mise en place; one adult held up one baby, and someone else held up the other. We kept an elaborate spreadsheet chronicling who had eaten what, drank how much supplement, peed what amount, and p.o.o.ped what volume. Some weeks into this routine, I was recounting this tale of survival to a table of friends and mentioned how hard we had been working to breast-feed our daughters. one adult held up one baby, and someone else held up the other. We kept an elaborate spreadsheet chronicling who had eaten what, drank how much supplement, peed what amount, and p.o.o.ped what volume. Some weeks into this routine, I was recounting this tale of survival to a table of friends and mentioned how hard we had been working to breast-feed our daughters. "We??" "We??" a mom friend sternly corrected. "You mean a mom friend sternly corrected. "You mean she she!!!"

"No," I insisted, staking a flag for forgotten dads, "I mean we!!"

Then I relayed my martyr's tale of kneeling outside the pa.s.senger's door of our station wagon during a recent outing, thundershowers pummeling my back, as I lifted one of my daughters like a burnt offering to G.o.d so she could suckle on Linda's nipple. "The first time one of my girls says she hates her father," I announced, "I'm going to re-create this pose!"

(For the record, none of the other moms was impressed.) Once we figured out how to keep the girls alive, we could finally think about their development. And from the beginning, we were nervous about words. The most common question we were asked as parents of twins was, "Do they have their own language?" Twin talk, or idioglossia, is a condition in which twins develop a private language incomprehensible to outsiders. The princ.i.p.al explanation, we were told, is that children learn to speak by mimicking those around them, and twins spend more time staring at each other than at their parents. Also, grown-ups rarely speak to twins face-to-face, more often addressing them as a pair.

Enunciation became our obsession. Phonics was our focus. Forget stage parents: We were diphthong parents. And whether it was genetics or overcompensation, the process worked. Our girls talked before they walked; they knew their ABCs by a year; by eighteen months they were losing themselves in menus and catalogs; and by two and a half they were reciting Dr. Seuss in the accent of Mary Poppins. "Use your words," we begged when they threw tantrums, but more often we pleaded for the opposite. "Stop talking and go to sleep!" Idioglossia who? Our girls loved to talk.

Except when others were around. When the doorbell rang, our nonstop chatterers suddenly turned into ardent mimes. To circ.u.mvent their shyness, we devised a list of questions for them to grill every visitor: When is your birthday? What did you have for breakfast? What is your favorite place? Eventually they added a question of their own-What is your favorite Disney princess?-and that's when we knew it was time for another game.

We called it "Reporters." Killing time one day in an airport, I sent the girls to far-flung corners to count the number of seats, ascertain the color of a sign, or ask a jetlagged pa.s.senger where she lived. Each girl was charged with announcing her name and giving a report on her findings.

But the most effective tool we found for building meaning through words was a game I played every night as a child: Bad & Good. Dinner was sacred in my house. My siblings and I were encouraged to do our own activities in the afternoons, but 6:00 P.M. P.M. dinner was untouchable. Every night we followed the same routine. A designated moderator would go around the table and ask each person, "What happened bad to you today?" My parents offered bads, too, and the effect was to show their vulnerabilities in a sort of real-time tutorial in coping with disappointments. The one hard-and-fast decree: "You can't knock someone else's bad." dinner was untouchable. Every night we followed the same routine. A designated moderator would go around the table and ask each person, "What happened bad to you today?" My parents offered bads, too, and the effect was to show their vulnerabilities in a sort of real-time tutorial in coping with disappointments. The one hard-and-fast decree: "You can't knock someone else's bad."

The next round of questions was upbeat. "What happened good to you today?" The value of ending with positives was lost on none of us, but the game has an irresistible structure and intimacy.

When Linda and I initiated Bad & Good with the girls, they didn't grasp the rules at first. They would repeat our our bads-"I didn't get enough sleep"-or mimic each other's-"Mine is the same as hers." But in time they grew more confident in expressing their feelings: "My sister stole my tiara" or "Mommy stayed with us all day!" The game became a way to chart their individuation. It also helped show that difficult conversations can be had with people of all ages, often with conflicting points of view-as long as you learn not to knock them. bads-"I didn't get enough sleep"-or mimic each other's-"Mine is the same as hers." But in time they grew more confident in expressing their feelings: "My sister stole my tiara" or "Mommy stayed with us all day!" The game became a way to chart their individuation. It also helped show that difficult conversations can be had with people of all ages, often with conflicting points of view-as long as you learn not to knock them.

THIS MADE IT ALL the more surprising when we didn't follow our own advice. the more surprising when we didn't follow our own advice.

As I acc.u.mulated more rounds of chemotherapy through the fall, my body began to deteriorate. I shed weight like tears; my immune system grew weaker; my eyebrows and eyelashes tumbled with the leaves. More disturbing, I was hospitalized repeatedly. These five-day confinements would come on suddenly. In the morning I would be uncomfortable, but fine; by the afternoon my fever would spike to 103.5, and I was forced to hurry to Urgent Care. My white and red blood counts would flat-line, leaving me vulnerable to colds, flus, pneumonias, and most of the other contagions preschoolers routinely bring home. I caught every one. We bought facial masks in bulk.

But the most significant decision we made was not to tell the girls where I was going. To be fair, this had been mostly my decision. The girls didn't know what a hospital was, and I didn't want to concern them.

It was a huge mistake.

In early November I returned from a five-day stint on the twelfth floor at Memorial Sloan-Kettering Hospital and resumed my bedtime duties with the girls. In recent months I had been playing a game in which I asked each of them to say two things she wanted to hear in a story, and I would then weave them into a fairy tale. I liked this game because it was a high-wire act every night and taught me more about storytelling than any graduate seminar. The girls liked it because they got to partic.i.p.ate. Tybee usually insisted on something pink; Eden invariably requested two girls in dresses.

On my first night home from the hospital, I asked them what they wanted in their story. Tybee: "A pink frog and strawberry ice cream." Eden: "Two girls who don't have a family."

Uh-oh.

The next morning, after Eden erupted into a melt-down, I led her to the crying chair. "Why did you request two girls who don't have a family?" I asked. "Do you you have a family?" have a family?"

"Yes."

"Who?"

She pointed to me, then added, "Mommy and Tybee."

"Are you scared sometimes that you don't have a family?"

She nodded. "When you and Mommy go away from the house."

I almost didn't want to ask the next question. "Were you scared when Daddy went away this weekend?"

"I was very, very, very, very scared," Eden said. That's four very verys.

My heart sank. That afternoon we got a call from the teachers. "The girls are being a little clingy these days, is something going on around the house?" That night I introduced a new game. It was called: "Would you like to ask Daddy a question?"

Eden went first. I brought her into my office and carefully explained that Daddy went to the hospital during his trips away from home, and that the doctors took care of him there. Did she have any questions about the hospital?

"Where do you sleep?" she said. I explained that they have beds. "Does it hurt?" No.

When her turn came, Tybee was more probing. "What do they do with the red parts under your skin?" "How do they see inside you?" "When they stick a hole in you, how do they close you up?" And most important, "Where do you eat?" When I told her that the hospital has a restaurant, she became very animated. "Daddy, this conversation has gone on too long!" Then she sprinted out of the room. "Eden! Eden! Do you know what?! They have a restaurant at the hospital!"

As she left, I realized that my bungled attempts to protect them had yet again proved foolhardy. Worse, I had failed to remember the one admonition we had most often flung their way: Use your words. Sure enough, as soon as we described where I had been going, their anxieties disappeared.

And I was reminded of one of my favorite messages from the Bible, from the opening of Genesis. Before there is order, there is chaos. Before there is light, there is darkness. And what is the only force strong enough to overcome that disorder? What does G.o.d use to create the world?

He uses words.

.13.

CHRONICLES OF THE LOST YEAR

volume IV

December 1

Dear Friends and Family, Waves of wind, rain, and Arctic chill have pa.s.sed through Brooklyn in recent weeks and the leaves are finally off the giant maple tree that shades our tiny backyard. With the shortened days and vagaries of a brownstone's heating, we now face the paradox of winter: the branches are bare outside our windows but more light makes it into our home.

One morning recently I found myself making a series of lists. The first covered all the parts of my body that ached or pained or had something wrong with them. I got so overwhelmed I stopped counting at thirty. The second list mentioned all the times I had cried in the previous few weeks. This tally included a few pieces of b.u.mmer news, at least one occasion of self-pity, a bout of agony at the pain I was causing my family, and a tearful bit of antic.i.p.ation at receiving a friend's news that she was cancer-free after five years. The final list counted all the places I would rather have been that day. This list was rather long.

It was my birthday. I was in the hospital.

As feared, the last few months have been challenging. I pa.s.sed into the belly of the chemo colossus and experienced many of its most ferocious side effects. First, I got an ear infection, followed by pneumonia, and had to forgo several weeks of treatment. Then, twice in the span of three weeks I was hospitalized on five minutes' notice-once for elevated Methotrexate toxicity in my kidneys; the second when my white- and red-blood counts fell to near zero, and I had no effective immune system.

My doctors considered these developments routine and were not particularly alarmed, but they are evidence that the regimen, as promised, is taking its c.u.mulative toll and making my body weaker. Also, the physical and emotional challenges of spending four days in a hospital cancer ward all twisted up in IV cords and pumped up on steroids are considerable. At one point I wrote Linda: "It's so much worse than anyone will ever know."

Still, I managed to pa.s.s through this unpleasantness and am excited to be nearing the end of the four-plus months of preoperative chemotherapy. My doctors are giving me several weeks off to regain my strength before the surgery, which is scheduled for late December. At the moment, Dr. Healey is planning a fairly innovative, sci-fi procedure. He will cut out the eight or so inches of my left femur that houses the primary tumor, then replace it with a t.i.tanium prosthesis. He will also remove the parts of my thigh muscle that have been corroded by the cancer.

A plastic surgeon, Dr. Bebak Mehrara, will then remove most of my left fibula, which we're told is an extraneous bone that doesn't need replacing. He'll graft the fibula to the healthy parts of my left femur, then screw it to the prosthesis. He'll then reconnect the fibula's blood vessels to those in my upper leg. The idea is to take the inorganic object-the t.i.tanium-and fuse it with an organic object-the fibula-to make the resulting construct as strong as possible. To give you an idea of how rare this is: Dr. Healey told us he has only done this procedure twice. But for what it's worth: One was on the special teams coach of the Jets, and as those in the New York area know, Gang Green's special teams have done quite well this year!

Following the surgery, I'll face several weeks of intensive, in-patient recuperation before being thrust almost immediately back into postoperative chemo, which should last another three months. At that point, with my body likely depleted and my mobility impaired, I'll begin physical therapy. As I've been referring to all this since July, I'm looking at The Lost Year.

So how are you holding up? I'm wobbly, at best. A few times in recent weeks, as I pa.s.sed through rocky moments, I've wondered whether there is some correlation between cellular weakness and emotional sensitivity. The feebler I get the more acutely I feel the pain, especially emotionally. When my mother-in-law called me one night in the hospital a few weeks back and told me she thought the girls were suffering in my absence, I put down the phone and bellowed into my hands. There's a reason a primal scream is called a primal scream. Some fears are primordial. I'm wobbly, at best. A few times in recent weeks, as I pa.s.sed through rocky moments, I've wondered whether there is some correlation between cellular weakness and emotional sensitivity. The feebler I get the more acutely I feel the pain, especially emotionally. When my mother-in-law called me one night in the hospital a few weeks back and told me she thought the girls were suffering in my absence, I put down the phone and bellowed into my hands. There's a reason a primal scream is called a primal scream. Some fears are primordial.

Still, for the most part, we continue to take the hits, adjust our sights, and alter our expectations. Linda, in particular, has felt squeezed at times by having a husband in a hospital room across the river and two three-year-olds at home. She canceled her trips abroad, held conference calls from her cell phone in the chemo clinic, and struggled with my sometimes stoic silence.

The issue of how much discomfort to share with her and others who are already overburdened by caring for me has been a puzzle. One night Linda lay down on our bed and announced I simply had to share more of my struggle with her. I told her I was only keeping quiet to protect her, but when she insisted, I unloaded my catalog of minor ailments and anxieties. She became so rattled she didn't sleep for two days. Stoicism does have its virtues.

But a few of the dates that meant the most to me this fall did occur during "up days" in my treatment. Foremost among these was Linda's annual fund-raising gala for Endeavor. The event, which raises money for Linda's pioneering work supporting high-impact entrepreneurs in emerging countries, is like having to plan a wedding that is plopped down in the middle of our lives every year: black tie, five hundred people, seating charts, sensitive egos, and high-stakes toasts.

To add to the pressure, I was hospitalized as late as seventy-two hours before the event. But at the last hour my bone marrow rallied, and, in one of the few benefits of having lost so much weight, I was able to tuck myself into my wedding tux at the weight for which it was originally tailored. I even ditched my crutches for the night and strutted through my responsibilities as Endeavor's First Man. As Linda radiantly spoke of her organization's amazing accomplishments this year, and as Endeavor's chairman, Edgar Bronfman Jr., paid tribute to her incredible hard work even during her personal struggle, I was hardly the only person raining tears in the room.

For all the joy of this event, some warning signs did emerge for future years-and I'm not referring to fund-raising. I'm referring to fas.h.i.+on. We have a category of marital accessory in our household that if I felt I had any standing at all as a relations.h.i.+p guru, I would recommend for all successful marriages, and that is: The Gala Dress, otherwise known as The Thing About Which I Don't Ask-Where It Came From, What It Looks Like, How Much It Cost.

I've been quite proud of my hands-off att.i.tude over the years, but this year I realized I might have to change my policy. The girls were quite excited by all the effort put into Mommy's appearance and managed to get their own nails done, too, at the Das.h.i.+ng Diva up the street. They were even jazzed to see Daddy in his "tup-xedo." But as I was leaving for the event, they announced: "Next year we're going to get Gala Dresses, too!" Uh-oh. The Domino Theory is back-and this time it seems to be working.

The big picture. As you can see, cancer is not linear. Our lives rock unaccountably-and unpredictably-among moments of hards.h.i.+p, stress, joy, pride, laughter, and exhaustion. There is profundity to explore, but also laundry to do. Someone asked me recently whether the "up days" of chemo, following the "down days," suddenly seem beautiful and full of hope. Maybe, but I'm usually too busy unclogging the sink. As you can see, cancer is not linear. Our lives rock unaccountably-and unpredictably-among moments of hards.h.i.+p, stress, joy, pride, laughter, and exhaustion. There is profundity to explore, but also laundry to do. Someone asked me recently whether the "up days" of chemo, following the "down days," suddenly seem beautiful and full of hope. Maybe, but I'm usually too busy unclogging the sink.

In that regard, we are very grateful for the many hours, afternoons, and weekends that our families and friends have spent helping us endure, and enjoy, this time. A special thank-you to the Cla.s.s of 1983 at the Savannah Country Day School for taking time out of our reunion to send such robust best wishes. And our warmest embrace to all those who have sent nourishment, diversion, cards, and prayers. We have composed thank-you notes many times over in our heads. Please bear with our bad manners and know that we feel your support.

After five months, I have (mostly) accepted that I cannot antic.i.p.ate or design how I will feel on any given day. One of my mottoes has become: "No excuses. No apologies. No planning." If someone makes me a giant bowl of chicken soup with matzah b.a.l.l.s and I have a sudden craving for marinated artichokes and Milk Duds, I go with my craving. If someone flies in from Kazakhstan and cancels a lunch date with Mayor Bloomberg to come for a visit and I need a nap, I take the nap. I only wish selfishness was more fun!

As we head into the holiday season, the one list we know that is longer than ever is the one that contains all the things for which we are thankful. And if we've learned anything during this process, it's to take a moment to share that list with those who are on it. Recently I was speaking to a friend who had lost her father before her first birthday. The one thing she most missed from her father, she told me, was letters directly from him. My friend's older sister had received some, but she had not, because she was only a baby. My friend shared with me that every year she takes time to write a letter directly to each of her her children telling them how much she loves them. children telling them how much she loves them.

I can think of no better holiday wish from us to you. So in this season of anxiety and hope, may your home be filled with health, your lists with joy, and your letters with love.

And please, take a walk for me.

Love,

.14.

BEN

Tend Your Tadpoles

FOR AS LONG AS I can remember, I kept an inventory in my head. I never gave it a name. I never wrote it down. The list contained the names of people who would come to my side in the case of an emergency, no matter the circ.u.mstances, no questions asked. If I got into trouble, I would just call one of these people and he (or she) would hop on a plane, or bail me out, or write the check, or hold my hand. And every time I made the list one name was at its top. I can remember, I kept an inventory in my head. I never gave it a name. I never wrote it down. The list contained the names of people who would come to my side in the case of an emergency, no matter the circ.u.mstances, no questions asked. If I got into trouble, I would just call one of these people and he (or she) would hop on a plane, or bail me out, or write the check, or hold my hand. And every time I made the list one name was at its top.

He was the friend who was always there, back before the memories begin. He was the friend who lived around the corner, who sat next to me at lunch, who a.s.sured me that some girl really did like me. He was the friend who traded his (forbidden) Rice Krispies treat for my (boring) Milano cookie, who helped make that epic Hot Wheels track that looped, Evel Knievellike, down the stairs, around his mother's antique breakfront, and over the toilet. The thing really could have been in The Guinness Book of World Records The Guinness Book of World Records if the dog hadn't knocked it over. if the dog hadn't knocked it over.

He was the friend whose birthday I never forget and whose childhood phone number I still remember. Who always looks eight to me, no matter the pounds, the gray hair, or the teenagers of his own.

He's the friend I have nothing in common with except that we grew up together.

Yet sure enough, when I got sick, he was the friend I had to call. And in that way you're always connected to that friend, even when you can't explain it; he was the friend that on the weekend when I was at my lowest-my birthday in the hospital-he was also at his bottom. His high school sweetheart, his wife of twenty years, the mother of his two children, sat him down and announced, "I'm leaving you."

He was the friend who then didn't tell me for six months because he didn't want to worry me.