Thursday, August 21, 2014

open letter to emily rapp

Dear Emily,

When I was going through some dark times a few years ago, I read a couple of your essays about slowly losing your son Ronan to Tay-Sachs online. At the time, when I was grieving the loss of much-wanted, miscarried twins, I devoured your writing greedily and gratefully. My experience was one part catharsis, one part relief that It could always be worse. I couldn’t hear such statements from my caring but baffled friends who didn’t get why something as common as a miscarriage should flatten my identity and shatter my sense of safety in the world. But I could hear it from someone who was living out everyone’s worst nightmare.

When I picked up your book in Vroman’s last weekend, I paused. Would reading it—as I’d wanted to since it came out—be indulging a kind of grief porn? It could always be worse. Would it ward off the evil spirits I still feared surrounded my fate, or would it invite them in?

Since my 2011 miscarriage, I’ve had the time and opportunity to ask nearly all of the questions you ask in The Still Point of the Turning World, which I’m now halfway through. Since 2011, things did get worse, then worse again, then better; at times I have squirmed under the world’s At least I’m not her gaze, and I’ve wanted to shake them, or the imagined them, and explain that my life isn’t better or worse than theirs so much as it is better and worse.

The questions: What is luck? What is quality of life? What is life? Is defeating death the ultimate accomplishment? (Spoiler alert: no.) What is time? What is meaning? What is probability?

Redhead and book.
One of the many passages I marked is the one where you write about having rare red hair, a rare birth defect, a rare eye problem, a relatively rare (benign) heart irregularity and a child with a rare disease caused by even rarer origins (not Ashkenazi Jewish genes but Moroccan ones you didn’t even know you had).

I’ve grappled with a fear that I’m a chronic ten-percenter. About ten percent of the population is queer. About ten percent is left-handed. I’m both. I got breast cancer at 35 because of a rare gene mutation (BRCA-2, which is also common among Ashkenazi Jews, but came to me via my shiksa mom, not my half-Jewish dad, whom I can only blame for my big nose and curly hair). The twins I lost were identical, my doctor murmuring, One in a thousand. I survived—am surviving, am trying every day to survive, am trying to make my survival mean something, and knocking hard on wood always—because I am lucky (whatever luck is). But I have, by the most optimistic estimates, a ten percent chance of recurrence. If I’m always in the ten percent, what does this mean for me?

Love is for everyone.
Of course, we are both smart, educated, middle class white Americans born to loving parents, which makes us both lucky, if prone to self-destructive ambition when paired with our freakishness. (And I can’t help but note that when you are in the depths of despair, you turn to Thomas Mann and I turn to My Strange Addiction and other TLC fare. So I aspire even as I read about your most confounding moments, which led you to shun a certain kind of aspiration.) I find kinship in how you exile the American (human?) obsession with the future. I know that you know—as I know, sporadically, in my better moments—that God and love and joy are not to be found in plans and ambitions and writing fellowships, even though I doubt either of us will ever be totally content with just watching beautiful sunsets.

I read your book this week as I waited for the results of my every-four-months cancer blood test. I held it with me in the waiting room to remind me of this, the most important passage I’ve encountered so far:

Ronan helped teach me a lesson I had long been resisting: this world belongs to everyone. We all have a place in it, no matter how long we live and no matter what we look like, how we move or don’t move, how we exist. What matters is that we lived.

I needed to know that if I got bumped into the terminal category, if I couldn’t look forward to adopting a child let alone watching one grow up, the world was still for me. I had no idea how I might manage to face my friends with babies—whom I can face now only with great effort—my friends with lifetimes to write that book, build that house, visit that country. But in this alternate stage 4 universe, I could, thanks to you and a shitload of therapy and more informal philosophical counseling, imagine living with dying.

I’ve always been self-aware and empathic, which are good qualities for a writer, but which have had the side effect of making me overly aware of my “place.” As a kid, I knew which popular kids I shouldn’t even try to talk to and which I might make into at least casual say-hi-in-the-hallway friends. I knew the adult rhetoric that no one was better than anyone else, but I also knew, as all kids do, that it was bullshit.

Except that it’s not. The world is for everyone. This has environmental and socio-political implications that we should pay attention to.

But in the waiting room at City of Hope yesterday, I clutched your book and repeated to myself that The world is for me.

My tests were clear. I have that feeling of relief and clean-slated-ness that is the unique territory of the anxious and doom-shadowed. Because I’m lucky. Because I have insurance and good doctors and the ability to take care of myself. But the world is for me not because I have but because I am, for however long I am.



Saturday, August 16, 2014

historical reconstructions

1. is gratitude porn a genre?

The other day while driving home, listening to Fresh Air, I decided that The Knick was my new favorite show. Dave Davies was interviewing the creators and a medical historian who’d served as a consultant on the show. I can’t imagine that there are a lot of job openings in the field of medical historian, but I kind of want to be one. If my other career as the person who names nail polish colors doesn’t work out.

Medical theater.
Apparently the show is set in one of my favorite eras (New York at the turn of the last century, a.k.a. Newsies times) and centers on one of my favorite topics (the weird, dark, earnest trial and error that needed to happen so that I could live to get fake nipples—more on that in a minute).

The creators pointed out that the surgeons of the time were seen as gods because they were the main reason people were starting to live past their mid-forties. As gods, they were allowed to poke and prod patients in front of a theater full of colleagues. The patients just sat their naked, vulnerable and grateful.

A lot of them probably ended up dying anyway.

To say that I am grateful to be living in the time/place/social class that I do—even though I suspect that in another hundred years, we’ll be re-growing lost limbs/boobs from stem cells and not messing around with anything so unrefined as surgery—is an understatement. I can’t even fully wrap my head around it.

A long time ago I saw a cartoon of a man walking down the street; behind him, a piano had just crashed into the sidewalk. The caption said Thursday the 12th.

I feel like I lived through Thursday the 12th, and sometimes I just glance back at the piano and say, Huh, so that happened. Weird. Other times I feel the sidewalk shake, the breeze whisk past my ears. And I worry that Friday the 13th is just around the corner.

Yes, I'm chicken.
This morning I read Emily Nussbaum’s review of The Knick in The New Yorker, and I discovered it wasn’t my favorite show after all. She’s my favorite reviewer, and I knew that all the things that bugged her—clunky characterization and Dr. Quinn smugness—would bug me too. Which is not to say I wouldn’t totally watch it if I had Cinemax. But for now I’ll stick with my favorite medical-history comedy podcast, Sawbones. If you listen to just one medical-history comedy podcast this year….

2. nip/tuck/zap

Yesterday I had my final (knockonwood) reconstructive surgery. Now, somewhere beneath the gauze pasties taped to my chest, I have nipples—or “nipples”—made from the skin of my inner thighs. Sexy, huh? At first my plastic surgeon, Dr. L, had said he didn’t do nipples on radiated skin, since he’d had a couple of cases go terribly wrong. (For the record, he was able to fix them up nicely.)

I was annoyed that I only found this out after nixing my real ones, but by that point, I knew how to mourn body parts quickly and I took it in stride.

At my spring visit, Dr. L started talking about nipples just as casually as before; it seemed that he’d gotten past his own PTSD about the procedure and decided to make nipple decisions on a case-by-case basis. He thought I was relatively low-risk for healing problems, so I decided to go for it.

He greeted me and AK yesterday with big hugs, and he won my dad’s heart when he commented on his Route 66 sweatshirt: “Aren’t we on Route 66 right now? Part of it ran right down Duarte Road, didn’t it?”

My dad, who can be surprisingly tactful for someone who is probably On The Spectrum, refrained from launching into a story about his most recent cross-country Route 66 trek. Or maybe he was just busy with his more obsessive obsession, i.e., my health.

Later, as Dr. L sketched on my body with purple sharpie, he pointed to one of the black dots my radiologist had tattooed on me (again, with an attitude of: Oh, nothing, just putting a permanent mark on your body; patient objectification has survived into the 21st century).

“We can remove this, you know,” Dr. L said. “We have a [insert name of fancy laser tattoo removal machine here].”

“Oh yeah? That’s good to know. I actually work at place that has a tattoo removal machine, because we work with former gang members. Sometimes I think about going downstairs and getting myself zapped.” I didn’t add that the dots have kind of grown on me, as battle scars. Maybe that’s why some of the homies are reluctant to remove theirs as well.

We all have our battle scars.
“Like a Homeboy kind of deal?” Dr. L said.

I always get a little surge of pride when people know Homeboy, same as I did among the smaller group that knew P&W. I’ve never been very materialistic, but I’m a total nonprofit brand-prestige whore. It’s what I have instead of a 401k.

When I told Dr. L I worked there, he asked if I knew his friend Joe, a fellow plastic surgeon who was one of the volunteer tattoo removal docs. Just as Homeboy dispels myths about gang members, I hope it dispels a few myths about plastic surgeons too. They’re not just Nip/Tuck types getting rich off Beverly Hills housewives’ insecurities. Dr. L’s specialty is reconstructive breast surgery, and his friend Joe donates his time to making homies hire-able.

I walked out of there a few hours later with bloody boob bandages and purple bruises like butterflies on my hips, from where he’d suctioned fat to round out my wonky, radiated right boob. I was excited to spend the rest of my day off sleeping, binge-watching Mad Men with AK and eating sushi. There’s nothing like free lipo and really nice fake boobs to make you want to take better care of your body. It’s dumb that I feel a need to make myself “worthy” of Dr. L’s good work, but there you go. For now, taking care of my body means doing nothing much at all, and I seem to be pretty good at that.

Saturday, August 09, 2014

after a while you switch to low fat

1. friend(s) vibe

There’s an episode of Friends where Chandler breaks up with someone—maybe Janice, maybe not for the first time?—and drowns his sorrows with Monica and Rachel. They teach him feminine heartbreak rituals, handing him a tub of chocolate ice cream and a spoon.

“This doesn’t taste very good,” he says.

Monica shrugs, resigned: “After a while you switch to low fat.”

The low fat nineties.
I remember the first date—or date-type thing—I went on after B and I broke up, with an androgynous Ivy League hipster screenwriter I’d met on MySpace. She was witty and sarcastic but nice, and had a great asymmetrical haircut. Her mom had died young. Her dad’s family was among the rich white people who fled Cuba after the revolution, which gave her an intriguing air of both privilege and oppression. When, after two ambiguous date-type things, I confessed that I liked her, she called me up and told me she’d gotten more of a “friend vibe” from me.

It would have been a nobler gesture if she hadn’t already told me a story about a friend of hers rebuffing a girl using the exact same phrase.

Still raw and sad about B, I took the day off work to lick my wounds.

I was thinking about this today, because I encountered some heartbreak this week—big heartbreak—and I was feeling really mad at myself for only working forty hours, only working out once and not working on my novel at all.

Arguably, I should cut myself some slack. But when heartbreak becomes a lifestyle, you have to switch to low fat.

2. harmony

Here’s what happened—I’m going to keep it general, partly because I’m not 100 percent sure it’s over, and that’s part of my confusion. We had a really promising contact from a birthmom. Not our first, as regular Bread and Bread readers know, but our most promising and consistent. We felt like we really clicked with Harmony, as I’ll call her. We talked or texted or video chatted with her almost every day starting Fourth of July weekend. There were some ups and downs in her family life and with her physical and emotional health, and each time, my stomach clenched with anxiety, which gave way to sadness as I delved into self-protective, preemptive mourning.

Which might be what I’m doing now. Or not. I’m kind of surprised by my utter confusion. Usually I’m so quick to fill in the gaps in what I know with my own hopes and fears; I want to call this progress, but then again, maybe I’m just out of my element.

Each time the situation seemed shaky, I tried to do what I learned during the time AK and I were having problems: I went through the motions of patience, even when I didn’t feel patient inside. I reiterated to Harmony that we were there for her, because it was true. (Is true?) I tried to remember that she had an interior life that was completely different from my own. Like AK, she always resurfaced.

She was honest and a good communicator, and if she had those qualities, I felt like we could handle whatever came our way.

She said she wanted to match with us (the adoption equivalent of getting engaged). So we were the adoption equivalent of engaged to be engaged.

She liked it. She talked about putting a ring on it.
But then last week, just when things seemed more encouraging than ever, she became less communicative. And there were some questions about her honesty, and whether it was the legitimate, mild dishonesty of a woman whose plate was piled high with ambivalence and drama and choices and hormones, or the more serious dishonesty of someone taking advantage of an opportunity for attention.

3. debbie downer and angry annie

Wednesday night, AK and I walked to the York and drank old fashioneds and discussed the maddening nature of the adoption process.

“I’m mourning how, for a little while, I didn’t worry about growing apart from all our friends with kids,” I said. “I mean, I love them anyway, but it was nice to not have that feeling of working myself up to enjoying their family-ness. It was nice to, like, see it as a point of connection instead of distance.”

“I know, me too,” said AK, who sees all things through the friendship lens.

There were ways we didn’t see eye-to-eye too, and we know this is our task as a couple: to respect those differences and love each other anyway. No small task for a sensitive, two-lady couple—enmeshment is practically written in our stars.

Last night we went to a Spoon concert at Hollywood Forever, which was the perfect medicine. I loved lying on the grass next to a mausoleum looking up at the black palm trees against the gray sky, as Spoon played its upbeat but urgent and achy songs. I was melancholy, half removed from the world, thinking of the dead.

There is no spoon. Wait, yes there is!
AK, on the other hand, was irritable—annoyed at honking drivers and the woman who scanned our tickets and herself for not immediately handing her the proper things to scan.

“I’m kind of angry tonight, aren’t I?” she observed. “And you’re probably kind of sad.”

There was a time when I would have seen her irritations as shallow and mean, and she would have seen my sadness as Debbie Downer-ish and standing in the way of enjoying life. Now we know better, even if it doesn’t always help in the moment. Now, unfortunately or fortunately, we have practice.

4. the emotional gay olympics

Okay, flashback to Thursday, the day I set aside for myself to wallow. That day I didn’t put in much work after my doctor’s appointment (more about nipple reconstruction soon—because this blog covers all of life’s joys), and I ate a bowl and a half of cereal for dinner and a chocolate bar and a half later, but not more than that because HARM REDUCTION/after a while you switch to low fat.

I wanted to go home and listen to the one podcast I am always in the mood for, Paul Gilmartin’s Mental Illness Happy Hour, while making fashion collages on Polyvore. That’s my go-to thing when I’m tired or mildly depressed. When I’m super depressed, I can only watch absurd reality shows and dark documentaries on Netflix. Recently my friend Annette said that her go-to thing was astrology, and she’d placed a book by Theodor Adorno—a brainy theorist, not an astrologer, although maybe there’s not as much difference as brainy theorists would like to think—on her desk as a reminder to challenge herself.

Pour yourself some Prozac and pull up a stool.
If you’re still reading, I want to know: What is your go-to thing? I want to know that you have a thing that consumes more time than it should. I hope you feel mild shame, like I do, but we should both remember that as humans we just reach our capacity, earlier some days than others.

Anyway, that was my impulse Thursday night, but I knew it would be better for me to let off some steam with a real person, and the ever-generous Wendy invited me to her apartment for poolside drinks.

We studied our toenail polish in the aqua glow—because there is nothing lovelier than a still swimming pool at night—and discussed philosophy and psychology and babymama drama.

The obligatory summer photo.
“Open adoption is like constantly breaking up with someone you might not have dated in real life,” I said. “And when I land in this place, where I’m over-sharing all the time and crying at work and having all this drama in my life, I feel like people—I’m not sure who, so I really mean my superego—are saying, ‘Well, she must seek it out.’”

“I took this class on psychology and literature, and I mentioned the idea of the id, ego and superego,” Wendy recalled, “and the professor completely shushed me, like those ideas were so out of vogue.”

She thought of her dad, who volunteered with the dogs on death row at his local shelter and whispered in their ears that they were loved, but who wasn’t so great at expressing love with the humans in his life. It was just about the most heartbreaking story I’d ever heard—for all parties involved.

“So over-sharing is probably good,” Wendy concluded.

“I wish they—” (again the anonymous, judgmental “they”) “—could know that I’m not a mess because I’m a mess but because this is varsity-level emotional shit. To put yourself out there over and over, to enter a stranger’s life when both you and she are in this really vulnerable place, and to try to plan a child’s life and make this kind of arranged marriage. And then when it goes bad, to do it all over again, and put your best foot forward again. That’s like the emotional Olympics!”

Wendy, who is a hearty agree-er, heartily agreed.

I thought about Homeboy’s Restorative Justice program, in which people who’ve committed violent crimes meet with the family members of violent crime victims. The perpetrators take responsibility for their actions while also linking those actions to the terrible things that were done to them. The family members forgive them as surrogates for the people who actually hurt or killed their loved ones.

“Okay,” I conceded, “maybe open adoption isn’t quite the emotional Olympics. But it’s at least the emotional Gay Olympics.”

5. spiritual direction from an angel who once considered slugging a pregnant woman

I declared yesterday Fresh Start Friday—because I always want to leave my sadness behind before I’m ready, and also, on a healthier level, because I realized I needed to put some plans in place to take care of myself over the next week or so. First, I decided to also make it Facebook-Free Friday (and if you saw this link on Facebook, it’s because it’s networked with Twitter, which for whatever reason doesn’t fill me with the same self-hatred) and stay away for a week.

I also decided to do a week-long Daniel Fast (but without the spiritual parts, because whatev), which AK and I tried for a few days earlier in the week. I like food rules and control, and this isn’t a very restrictive fast as fasts go—I mean, it’s not really a fast at all—and it actually makes me feel really healthy. The gist of it is: fruits, veggies, beans, eggs.

And, more important than either of those predictable measures, I walked into the office of Mary Ellen, Homeboy’s program director, and started crying.

I love Mary Ellen. Not coincidentally, she leads the Restorative Justice program. She’s in her late fifties and reminds me a little bit of my mom, in that she’s incredibly nurturing and wise while also being genuinely uncertain and self-deprecating. Twenty-one years ago, she adopted her daughter through open adoption, after almost adopting a little boy whose birthmom decided to keep him at the last minute.

“The whole time we were matched, I told her, ‘You can change your mind; you have to do what’s right for you,’” Mary Ellen told me once. “Then when she changed her mind, I kind of kicked myself. Why did I say that?” She laughed.

Yesterday, she talked about feeling mad at God when she was trying to get pregnant and wanting to slug a pregnant woman in an elevator.

M.E. on discovering gratitude: "Once I was hanging clothes and I thought, 'Dead people don't get to do this.'"
She also talked about brokenhearted-ness—which is such a physical thing that the term really makes sense—as a pathway to spiritual depth, to understanding paradox. The blankness I feel right now could be the space for something new to enter. The one consolation. Sometimes it’s not enough. Sometimes it’s everything; after all, isn’t the main reason I want to have children so that I can have some deeper understanding of human experience?* In that moment, in Mary Ellen’s office overlooking the Chinatown trestle, I physically felt my chest open. Things were not okay, but things were okay. This was love and letting go and God.

She talked about meditation in a way that made me not feel grouchy about trendy, platitude-y Eastern practices. She didn’t tell me we would get a baby, let alone Harmony’s, but she said, “This doesn’t feel over.” She said she would pray for us, and for Harmony, because whatever was up, it sounded like she could use some prayers.

6. turning off netflix as a heroic act

Today it feels a little more over. Today it was hard to get out of bed. I watched part of this super dark, super fascinating documentary called Cropsey, about a Staten Island urban legend that may have actually been true. It featured an abandoned children’s hospital, kidnapped disabled children, folklore and a borough that used to be viewed as a place to discard waste, from dead bodies to unwanted living ones. It was pretty much the creepiest story you could imagine, and completely riveting.

The filmmakers and the creepiest building ever.
I wondered if I was chronically depressed. At 10:30 I made myself turn it off, leave my messy house and walk to Highland CafĂ©, where I ended up sitting next to a sweet British family that resembled what ours what ours would have looked like if we’d matched with Harmony.

A different person might have seen it as a sign. Of what? I don’t believe in signs from God, but I believe that the human impulse toward meaning is God. Seeing this family almost hurt more than seeing yet another pregnant woman in her thirties, who are a dime a dozen. This story—or the story I imagined, because who really knows—could actually be our story, except it wasn’t. At the same time, I couldn’t do anything but adore them, as their laugh-lined mother hugged her little girls and responded to one of their English-accented questions, about how to spell “contemporary.”

*But also because I have a predictable, base desire for immortality and I want to buy tiny shoes.