by Jill Wolfson
The real mystery to me is why we’re born, why we die, and why we do what we do in between. As far as I can tell, nobody has answers for that.
People. That’s the real final frontier.
After that, Tyler found himself looking up random words on Amanda’s computer and printing out what he found. Something would pop into his head, and he wanted – needed – to find out if she had anything to say on the subject.
Under the word God:
Sometimes I feel like I’m the only one who sees real life – and everyone else is just a programmed pod person. But the next minute, I wonder what’s wrong with me. Why is everyone else happy? Why do I feel like I’m missing something really, really important, like a personal text message from God?
Under crying:
I wonder if Tyler remembers the time I had poison oak so bad I thought I would die. I had it everywhere, on my scalp, between my toes, even you know where. Tyler heard me crying in the middle of the night and stayed up with me watching 101 Dalmatians. The movie was his idea. Dogs with spots, me with spots. I’ll never forget that.
Under earth:
People say to try and live every day like it’s your last one on earth. But how do you do that when there’s homework? You get in big trouble if you blow it off. But I bet no one dies saying, “If I could live my life all over again, I’d do more homework.”
Under life:
Today, I tried to be aware of every moment of my life. Everyone thought I was acting really weird. Tyler asked what the hell I was staring at. It was impossible to take it all in. I thought I would explode.
Tyler had assumed that he had known everything about his sister, who she was, why she did what she did, the usual stuff that brothers know about their annoying little sisters. Now he wasn’t sure. Who was this person who grappled with the same kind of questions that went through his own head? It was as if there were all these different girls bouncing around inside of her, up and laughing one minute, down and crying the next.
Who was she?
Did he want to know this person better?
If he knew her better, would he like her?
If he liked her, then what? What then?
If he knew her and if he liked her, something else might happen. He might love her.
And if you love someone and they aren’t there anymore and there’s no way to get them back, you miss them. You can’t help it. You really, really miss them.
And he wouldn’t just miss the Amanda who was fourteen and frozen in time. He would miss the Amanda who was seventeen and eighteen and twenty-five and thirty. He would miss the sister he was supposed to have his whole life, who would share his memories and know him in the way that nobody else did.
It takes a lot of courage to love something that death can touch – that death has already touched.
Tyler shuddered with the full understanding of what that sentence really meant. He was getting to know his sister, getting to love her, starting to miss her. That might lead to more than his heart could bear.
TWENTY-THREE
I GOT AN INFECTION and then another infection. None of them were life-threatening, but they kept me in the hospital. More tests and more IV drips and another round of tests. It seemed like I was never going to get to go home. That was the bad news. But with the bad came the good. On one of those hospital-bound days, I experienced two momentous events.
The first: Milo Nutley officially introduced me to his parents, a major step forward in our relationship. A thousand TV shows, movies and dating websites can’t be wrong. Meeting the parents labels you as more than just friends. Mom likes to say that labels are for pickle jars, but I don’t think this is the kind of situation she has in mind. I think she was thrilled for me.
I had certainly seen the Nutley parents around the hospital before. Milo and his mom looked separated at birth, which of course they were. They had the same broad forehead and same gap between their front teeth. I’ve heard that a front-tooth gap signals a healthy sexual appetite, so why mess things up with braces? Milo obviously got his very masculine body type – long legs and broad shoulders – from his dad, but happily not the middle-age paunch flopping over his belt.
I knew that his parents weren’t divorced and had never even been married to other people. That made them as boring as two old, tired dogs to Milo. To me, however, they were objects of fascination. Pretty much every adult of my acquaintance – serial daters like Beth and the other single moms in our apartment building – had cycled through every possible variation of coupledom. I could fill a wall with diagrams of arrows and circles of Mom’s romantic entanglements. As a result, Mom, who’s an optimist in every other area of life, frequently said bitter, uncomplimentary things about the institution of marriage. That’s why they call it an institution. A prison is an institution, too!
A person of my age and with my nondating experience shouldn’t have to hear negative stuff like that all the time. A person should get to experience the other side once in a while. So whenever I spotted the Nutleys in the hallway, I studied them extra hard. I noticed whenever a quick touch or glance passed between them. I basked in their presence, and not just because Milo was the wonderful fruit of their loins. They possessed a secret I wanted. They knew how a man and a woman can remain uncheating and in love and keep their marriage alive, even when one of them has an unsexy belly paunch and the other should definitely add highlights to her lackluster hair.
I considered Milo’s folks to be part of a rare, select group, akin to ospreys, pigeons, certain apes, termites, beavers, bald eagles, red-tailed hawks and sand cranes, all of which, according to the Internet, mate for life and give me hope.
I had spent many happy moments envisioning my first official introduction to the Parents. Perhaps it would be in a fancy restaurant, Milo and me in our best clothes, our new healthy organs pumping and beating and secreting behind perfectly healed scars. I imagined ordering something definitely not recommended by the American Heart Association.
But as Mom says, life has this way of stomping its big foot onto the spine of the best-laid romantic plans. My introduction to the Parents took place right before the Pediatric Transplant Family Support Group in the all-purpose room on the fourth floor of Children’s Hospital. No pâté, but there were carrot sticks and low-fat bran muffins. Mom was there. So were Wendy (who had already been sent home and was back for this special event) and her parents and the hospital social worker, plus a half dozen or so transplant wannabes. Some of the kids resembled me, with the telltale bushy eyebrows and chipmunk cheeks of the newly transplanted.
Before the support group got officially started, all the kids hung around self-consciously. Milo looked particularly awkward sitting by himself in a wheelchair on the other side of the room. Standing near him, his parents were engrossed in conversation with Wendy’s mom and dad. I did notice with disappointment that at one point, Mr Nutley’s eyes wandered around the room and did a double-take when they landed on Mom, who looked especially gorgeous compared to all the pasty skin, bloated features and stringy, dull hair in the room. I think Mrs Nutley noticed, too. Without even pausing in the conversation, she pulled her husband closer, flashed her gap-toothed smile, and said something that made him look at her in appreciation.
Note to self: Don’t sock your true love in the gut just because he gawks at a gorgeous stranger across a crowded room.
My eyes turned instinctively to Milo. I was just in time to catch him on the verge of having a similar moment with another girl in the room, the one with the new pancreas and the real cleavage. Somehow, she had done something fashionable with her hospital gown. She was batting her eyelashes so hard I thought she’d sprain the lids. Shameless. But I couldn’t really blame her. Milo did happen to be the cutest boy in the room. Not that there was much competition. The only one who came even close had a funny-shaped, pointed head, which wouldn’t have been a problem except that he had no hair due to some medical procedure that I prayed I would never have to have.
“Hey,” I said.
“Hey,” Milo said back.
“Carrot?”
“Sure.”
I handed it to him. “Ever been to one of these things before?”
“Support group? Yeah. Sixty minutes of probing into how you feel. Sixty minutes of pressure to share. Sixty minutes of listening to everyone else share. It sucks.”
“Totally.”
“I’m only here because the social worker says attendance demonstrates compliance, and that’s important if a liver match turns up. I need to prove I have a positive attitude because of my, um, previous transplant screw-up.”
“Well, a positive attitude never killed anyone.”
“What’s that supposed to mean?”
“Not really sure. My mom says it about once a day.”
“I hate these meetings, especially when someone in the group starts to cry.”
I pointed across the room to the girl with cleavage. “She looks like a crier. Definitely.”
“When someone cries, there’s all this pressure to say the right thing. And then, inevitably, the group hug. First sign of a tear, and everyone is all over the crier.” Milo winced. “Please don’t let anyone cry today.”
And that’s when it happened, the introduction. I must give credit and a big thanks to Wendy for being her obnoxious, spoiled self. She realized that she had spent a whole three minutes without her parents’ full attention focused only on her needs. I could have hugged her (but I didn’t) when she started whining and nagging. Mrs Nutley gave one of those weak smiles of sympathy and understanding that moms give each other. Wendy’s dad shook hands with Mr Nutley before picking up his daughter and heading over to the snack table.
The Nutleys now had only one place to turn. To Milo and me. I smiled at them. They smiled at me. I waited, my weight shifting from foot to foot. Mrs Nutley touched her son’s shoulder.
“Milo, why don’t you introduce us?”
And just as though Milo always did exactly what his parents asked of him, just as if he personally thought this was the best idea in the world, he said, “Mom, Dad, this is Dani.”
That was the first momentous event of the day. The second?
I held my own heart.
But hold on. Before I put hand to heart, there was the Pediatric Transplant Family Support Group meeting.
I didn’t admit this to Milo, but I actually enjoy listening to people reveal their innermost feelings. I think most people do, or there wouldn’t be so many soap opera addicts in the world. I also didn’t mind the idea of talking about myself, as long as it stayed within the bounds of good taste. I had no intention of going into detail about post-transplant diarrhea. Some things are best kept to yourself.
We sat in a large circle, each kid flanked by one or two parents. The social worker, a man named Paul with the pointy ears of an elf, got things going by welcoming us in a very peppy way. We went around the circle and introduced ourselves quickly: name, age, body part, pre- or post-op. Parents tended to be more long-winded.
For example, there was Mother of David Who’s Waiting for Lungs and Is So Incredibly Brave. There was Grateful Dad of Carrie Who Got a New Heart Three Months Ago and He’s So Blessed to Have Her Home Again and Wants to Thank Every Nurse, Social Worker and Doctor Who Crossed Their Path During This Long, Grueling Ordeal.
After getting the basics on each other, social worker Paul set out the ground rules of sharing, of which there were surprisingly many, such as No offering unsolicited medical advice and Use “I” statements and What is said in this room stays in this room. He held up something that he called a “talking stick” and acted like it had mystical powers of the American Indian sort. It was only one of those cheap back scratchers you buy as a souvenir in Chinatown.
“Whoever has the stick gets to talk uninterrupted,” he explained. “Any questions about the rules and procedure?” Silence. “No? Good. So who wants to get us started?”
A cough. A nose blow. Silence, except for Wendy, who for insane reasons understood only by a spoiled eight-year-old, burst out singing “Doe, a deer, a female deer” from The Sound of Music. Her parents, who obviously found every annoying thing she did to be charming, didn’t shush her or anything. Then she opened a shoe box and dumped lots of papers onto the floor.
“Get-well cards from all my friends!” She rummaged around and waved a sheet of paper in the air. “This one’s from Amelia. ‘Dear Wendy, Teacher says you got a new kidney. We’re studying about kidneys. I bet you can pee real good now. Pisssssssssssssssssssssss.’ And this one is from my best friend Rachel and has a picture of a kidney bean that’s going la-la-la-la-la-la. And this one from my other best friend Rachel is really funny. There’s a superhero Kidney Girl and she’s—”
It’s a good thing social worker Paul broke in. “Well, thanks for sharing, Wendy. That put a lot of upbeat, positive energy in the room. Anyone want to share on that topic? Christine!”
He walked across the circle and handed the back scratcher to the flirt with the new pancreas. She lowered her eyes and sighed deeply, pressing the stick to her chest, which was rising and falling as if she had just won some great honor and was trying to convince us that she was not only a genius, but modest as well.
“Faith,” she said, and after a two-beat dramatic pause, added, “has carried me through the hard times.”
“Faith in what?” the boy with the funny-shaped head asked.
“Why, Henry, faith in God, of course.”
“Faith,” the social worker repeated. “Does anyone else here have faith in anything?”
“Myself!” Henry blurted out, but then cringed because he realized he had broken rule number six and waited for Christine to hand him the stick. “Myself,” he said again, this time without the spontaneity.
The stick went around the circle. Two more people in a row said “God” and three kids said “my parents” and one mother said “my son’s will to live” and Wendy’s father said “my daughter’s spunky courage.”
My mom said “karma,” which needed to be explained because there were actually some people in the room who had never heard of it. Where have they been? Mom got all tongue-twisted trying to explain because karma is complex in an Eastern way of thinking and most of the people in the room clearly had Western minds. Mr Nutley jumped in and helped out by summing up, “Karma is, basically, what goes around comes around.” Mom smiled at Mr Nutley, and he smiled back, and Mrs Nutley moved closer to her husband.
After the fifth time someone said “God,” Milo grew so squirmy I knew there’d be no holding him back. Before the woman next to him could say the us in Jesus, he grabbed the stick from her. “Hundreds of years of medical research. That’s what I have faith in.”
“Point well made, Milo,” the social worker said.
“And antirejection medication.”
“Many, many things to give us faith for the future.”
“And know what else? Know what I need to have faith in? Right now, I need to have faith that some healthy person is about to die suddenly. Like this!” Milo snapped his fingers. “Someone who didn’t have time to get used to the idea of dying, like we have. Someone who thought they had all the time in the world. I’m praying for that person’s death.”
“That’s a terrible thing to pray for!” Christine said.
“It sounds like you feel guilty, Milo. Guilt’s not an unusual feeling under these circumstances,” the social worker said. “Does anyone else have these feelings? Guilt isn’t—”
Milo tossed the back scratcher into the center of the circle. Clang on the floor and instantly claimed by Henry’s father. “I’m gonna hang a left here, folks, and move on to a different topic. I am sick to death of the endless medical insurance hassles.” Other parents mumbled in agreement.
“Henry, did you have something to say?” the social worker asked.
“Dating. That’s my problem. No one – I mean no one – wants to be my girlfriend. They’re afraid I’m gonna croak in the middle of a date.”
“Pills,” said one of the mothers. “How do you make sure your teenager takes all his pills?”
“I do hate the pills,” the boy next to her confirmed.
“Me too,” Carrie with a new heart said, and her father told her to not even think about not taking them, and she came back with “Don’t tell me what to do. It’s my body!”
“Golly, people! There are so many blessings. Don’t be so negative. We have so much to be thankful for,” Christine insisted.
A boy with post-transplant face bloat came back at her. His voice had a mushed, pained quality. “Golly gee, easy for you to talk, Ned Flanders. You didn’t turn into a whale after your transplant. Or get mouth sores.” He stuck out his tongue, which explained why he talked so weird.
“Yeah, Christine. And you didn’t get cancer from the antirejection medication and then need chemo,” Henry added. His hand tried to smooth back hair that wasn’t there. “Being bald doesn’t help with the dating situation.”
“At least you got your transplant,” the girl across from him snapped. “I might never get a kidney.”
Christine again. “Think positive. Think of the great college admissions essay we’ll all have. A transplant beats community service hands down.”
Wendy screamed that she wanted to go home.
Clearly, things had gotten out of hand. A definite chill settled over the support group, which made what happened next a welcome relief, at first anyway. Milo laughed. Loud. This was unusual because he typically had more of an ironic, twisted-half-smirk sense of humor. The laugh started in his belly and burst out of his nostrils in a wet way that made Christine say, “Gross.”
“Laughter, the best medicine,” the social worker said. “Care to share what’s so amusing, Milo?”
