New York Times: Please Cover the Other 99% of Infertility Patients

The New York Times wrote yet another article marginalizing those who are going through infertility. This, I am sure, will be a surprise to no one.

In this column for the Style section, Jenny Anderson points out, once again for the cheap seats in the back, that infuriating and factually irresponsible previous New York Times article about the “rise” in patients terminating one twin. The article had absolutely no evidence that this procedure was actually on the rise, but certainly insinuated that it was a trend.

For me, the most maddening part of the article was this quote:

Discussion about the genetics and ethics of managing multiples is on the rise. The Times recently explored the fascinating and complex issue of reductions — reducing triplets to twins or twins to a single baby — in this Sunday Magazine piece, which I could not put down. Studies like this reinvigorate the debate and reveal how fast technology is evolving.

You mean: discussion at YOUR paper about the genetics and ethics of managing multiples is on the rise. You know what’s NOT on the rise? Discussion in your paper about why INFERTILITY is on the rise, among women of ALL age groups and incomes and ethnicities.

I understand that the Style section tries to appeal to New Yorkers of the highest income brackets: they appeal to the top 1% (to borrow Occupy terminology) and assume that the rest of us yokels will be aspirational enough to read their coverage too. Fine. So why do many articles about infertility appear in the style section? Infertility is a disease.

Luckily, we have Redbook to balance out this crappy coverage. I really have to give Redbook lots of props for bravery for being the first publication (that I know of) to partner with Resolve and give a voice to the 7.3 million of Americans suffering with infertility. And the coverage was both factual and anecdotal and relatable.

If you haven’t bought this month’s Redbook already (and you really, really should), here are some highlights:

Indeed in a survey of couples having difficulty conceieving, conducted by the pharmaceutical company Merck, 61% of respondents hid their infertility from family and friends. Nearly half didn’t even tell their mothers.

This really surprised me. I had no idea so many people didn’t even tell their mothers!

Only seven states require insurers to cover at least part of infertility treatment. “It’s still beyond the means of most Americans,” says Alice Domar, Ph.D, executive director for the Domar Center for Mind/Body Health at Boston IVF. “We need to create a lot of noise to get more coverage.”

Word.

And, to answer the many, many comments on each article about infertility generated by each New York Times article about “just adopting”:

Why don’t you adopt? “It’s a wonderful option, but there’s a presumption that it should fall on the shoulders of infertile women,” says Keiko Zoll, 29, of Salem, MA. “When people ask, ‘Why don’t you adopt?’ I’m like, ‘Why don’t you?”

Keiko, you rule!

One last point to The New York Times: there are hundreds and hundreds of stories in the naked “cities” of the OBGyns’ offices you could cover. Instead of a millionairess going through her fifth egg donation at age fifty, you could write about about the “average experience”, which is usually filled with incredible heartache, loss and sometimes triumph. All you have to do is go here.

For my full documentation of The New York Times‘ articles on infertility, go here.

Tuesday Time Warp: Resolution

Each week, the lovely and talented Kathy hosts Tuesday Time Warps. Today’s Time Warp topic is resolution. The past post I chose was about searching for resolution in my 38th year: whether we would pursue a third child. Now I am almost 39 and am no closer to resolution than I was before.

My only serious option, were we to try for a third, is to heavily invest in Assisted Reproduction Technology, a branch of medicine which barely got me pregnant when I was 34, and my head ART chief noted that my ovaries were about as high functioning a machine as the Chevy Corvair. I can only imagine that my ovaries now are on a Ford Pinto performance trajectory at this point. Ping. KAPOW! (Top Secret, anyone? Anyone?)

This is all silly conjecture, except I feel after my last miscarriage that a child seems to be missing. I never thought I’d have three children. I’d be lucky with one, and now look at Ms. Greedy Guts with two children wanting three. With all of the environmental problems and economic chaos and lack of large financial funds and the high cost of living and the state of the world. You want three kids? I imagine all this is going through someone’s head. Not to mention all my infertility friends who are struggling with just wanting one. I feel so callous and unfeeling and uncaring to really pursue anything. So we haven’t. We’ve made, as Kathy puts it, a “soft no” decision.

I was mostly OK with it until I read this post by Chickenpig. Chickenpig is brave enough to not waffle: she feels in her heart that she has more children waiting for her. I admire her certainty.

Where does this lead me? I’m not sure.

Where are you on your journey? Are you “done”? Struggling to have one? In an ideal world where fertility was not an issue, how many children would you want?

Not-Penny’s Baby Shower

How do I explain how powerful Elphaba, my friend from the North, is? Let me start with an anecdote: recently it was announced that 75% of Ontarians support In-Vitro fertilization funding. I mentioned this to Darcy and told him: It’s because of Elphaba.

Elphaba’s hilarious, imaginative tart posts detailing the misery of infertility via, uh, untraditional methods (like her essay about the heartbreaking realization that the Vampire Sims she was controlling on her laptop were more fertile than her) were immediately a game changer in the world of infertility blogs, catapaulting her to blogger fame. Once she became pregnant, a situation she handled with utmost tact and thoughtfulness, she turned warrior. A stupid Facebook game was created to raise awareness for breast cancer by advocating that members announce pregnancy cravings (even when they were not pregnant). This “game” was incredibly hurtful to the many, many 1 in 8 couples going through infertility who had to scroll through these cruel announcements. Elphaba’s response was scathing and sane: “Pretending You’re Pregnant Isn’t Cute”. That post got 190 comments and was seen 11,000 times! So now you see why I think there is an Elphaba Effect in Canada. I think she captures hearts and changes minds.

That post allowed me to come out as an infertile myself in the post I’m most proud of, leading to the other Elphaba Effect: she often transforms meek, quiet citizens into warrior princesses, ready to take on Facebook Memes or critique really, really bad television movies about scary baby snatching plots.

Elphaba will be having a daughter, which seems incredibly fitting: I can only imagine the kind of shenanigans of social justice Elphie 2 will pursue, but if she’s not the feistiest baby girl in Canada, I’ll eat my Resolve shirt.

I will be giving to Elphie two things: the first is my own feisty daughter’s favorite dress. There are magical qualities associated with this dress. Yes, it’s cute and stylish and feminine without being foofy. But this dress commands respect, charisma and feistiness. I can’t imagine anyone except my daughter or Elphie’s daughter wearing it. Secondly, in case Elphie thinks this is weird, I will also be sending a gift certificate to Baby Gap, from whence this magical garment came from.

Finally, Elphaba, I am so thrilled and happy that we are all at this point with you: that I have “met” you, that you have taught me the value of standing up for what I believe in, that you are on that magical verge of becoming a mother. I know you will be an incredible mom, and I can’t wait to follow your journey into motherhood.

Fighting Wasps With Rubber Swatters

I often feel like I’m not living up to high enough standards as a mother. I get through each day, sometimes just barely making it to bedtime or Darcy’s nightly arrival. If he’s not traveling, which is increasingly the case.

But today I had a rare win, a victory when I knew I was being exactly the mother I needed to be. This victory was surprisingly literal.

Let me back up. Darcy allowed me a pretty much free day: I slept in and took a walk by myself. I took a bath. And finally finished “Schuyler’s Monster”, a book I’d been wanting to read since it came out in 2008 with lots of bloggy and print fanfare.

“Schuyler’s Monster”, written by Rob Rummel-Hudson, is an excruciatingly honest memoir of a father’s quest to first understand why his spunky, happy daughter Schuyler could not talk, the way he copes (sometimes poorly) with the eventual devastating diagnosis and the triumphant way he becomes a great advocate for her. It’s an ongoing story you can read about on his blog.

I really connected with his memoir mostly because he calls a spade a spade and refuses to sentimentalize his story. An excruciating “monster”, as he puts it, has always commanded part of his daughter’s brain and he explains how powerless he is to fight it and expel it.

“Special needs parents are fools, every one of us. We tilt at windmills and charge into battle with the monster, rubber swords drawn.”

I am lucky to have neurotypical children, but something in the memoir felt deeply familiar yet aspirational. The sense of failure that Rob expresses at being a parent, the fierce loyalty to his daughter, the continual championing against school administrators and teachers which eventually led to her being able to communicate is compelling and admirable. He’s an incredible parent, someone to look to in awe, but also someone human. I needed to hear from someone like this.

Today the twins and I went outside to eat a snack on our patio. It was a gorgeous autumnal day full of bucolic sights and sounds of scarlet and tan leaves slowly falling to the bluestone. We have had a wasp problem on the patio which has not let us enjoy our lovely space. Today I was determined I would provide my children with a wasp-free space: I would protect their enjoyment of the day from an attack of yellow jackets. I got a rubber guitar, a fly swatter I was amused by and purchased in Memphis (it has something to do with Elvis, as most touristy knickknacks from Memphis are wont to do) and manned my space. We had five free minutes before the wasps made a wasp-line to my daughter. I went into battle with that rubber swatter and free of curses and bad words of any kind dilligently chased that yellow jacket until I vanquished it from the bluestone. I swatted three more away before the multitude descended and we retreated.

But not before my kids had enjoyed 10 minutes of an excellent fall day.

I have never been prouder of my skills as a mother.

Because parenting is so subtle and mysterious and confrontational and mind-numbing. Clear-cut victories are rare. And fleeting.

I think all parents chase various monsters with rubber swords. The vast majority of us are incredibly fortunate that our monsters are small, relatively (hopefully) easy to slay. Our monsters are not of the Tyrannosaurus Rex size, like Schuyler’s. And yet, Robert and his wife show us how to deal with them directly, honestly, with insight and most of all with passionate love for their beautiful daughter, who lives her life in laughter and, because of her parents’ persistence, with words.

Rashomon: The Ill-Fated Blogger Sleepover

I am proud of this unintended blog hop of sorts, which gives three different perspectives of the same event. Not only are the posts a testament to how strong the bonds of friendship can be, but I believe there’s some insight here about how everyone’s history plays into their engagement with friends.

I have always been fascinated by the idea of a one-time event told from more than one point of view. I always try so hard to put myself in others’ shoes. And often fail. But my experiences with infertility and loss taught me many things and one of them is: you never understand what someone is going through until you are truly in their head. And no one can ever be in anyone’s head unless a blogger or writer is willing to be bold enough to put you there.

Here are the facts:

- Bodega Bliss, Stumbling Gracefully and I became great, real-life friends. We met through Stirrup Queens‘ ICLW (probably in December/January of this year: none of us are exactly sure of the date)
- Although we don’t live in the general vicinity, we live close enough to meet up in coordinated, concerted efforts
- None of us meet as often as we’d like because of logistical challenges
- Stumbling Gracefully, upon realizing that her partner Mi.Vida and my husband Darcy would BOTH be out of town the same weekend coordinated a sleepover at my house with Bodega, myself and herself so we could have some quality time all together
- Darcy came back earlier than expected

If you are not familiar with “Rashomon effect”, here is what you need to know. The famed Japanese director Akira Kurosawa wrote and directed “Rashomon” in 1950, and the movie tells the story of a crime in four different stories, based on what each character or victim saw and felt. According to Wikipedia: “The stories are mutually contradictory and not even the final version can be seen as unmotivated by factors of ego and face.”

Here is my perception of the event:

I have been burned by friends in the past and have a hard time trusting friendships in general. I had placed a lot of stock in this sleepover: my husband travels frequently and works many hours, I’m a stay-at-home mom of young twins and I don’t get out much. I had cleaned the house within an inch of its life, dealt with Darcy’s early arrival, talked him into making dinner and bathed the twins and dressed them really cute. Then I dealt with Darcy’s freakout about a late birthday the twins had to go to, no time to cook and a failure to be able to make dinner. I assured him we could order pizza. I could not wait for my girl time to begin!

Until:

I've been ready to leave the house for 30 minutes but I can't because icant find my wallet and keys. Seriously!?—
Esperanza Grace (@StumblingGrace) October 15, 2011

As I was trying not to freak out because Darcy had not gotten back from the grocery store (this was before we realized dinner was not going to be possible), I got a text from Esperanza:

“I can’t come. I can’t find my wallet. I’ve been looking for almost 45 mins. It’s nowhere.”

You know how people talk about their hearts sinking? Mine literally did. I was breathless for about a minute, just utterly and ridiculously disappointed by her text.

I immediately emailed Bodega, to make sure she could still come. Luckily, she could. It’s hard to say exactly how much I needed to see her.

Darcy returned laden with grocery bags. I told him about Esperanza, someone he adores and admires. “Yeah, she just didn’t want to come,” he replied. “She’s probably just too tired from hanging out with other people. She’s like xxx and xxx.” (Examples of flakey friends from the past.) I could tell that his own heart had sunk. Esperanza is a London friend. Darcy and I had incredible friends as a couple when we lived in London, and have not had friendships like that until Esperanza and Mi.Vida. We never had to put on a fabulous show for our London friends, or pretend to be fun or happy or engage in boring small talk or politely disagree about politics. We could be ourselves: debate, talk obsessively about sports (Darcy), philosophize about celebrities (me), laugh really noisily and generally act like idiots.

Luckily, Bodega is also a London friend. She entertained Darcy with tales of blogs she liked, food and baking. We all had a great time joking and talking really loudly. I thank the heavens each day that I made friends like this. I never would have found them without blogging.

Anyway, as the tweets and texts flew, I realized that Darcy was wrong about Esperanza. She deeply wanted to be with us. She had NOT flaked out. In fact, his theory could not be less the case.

When you only get to see your fiends once every few months missing it really hurts. Also, being a dumbshit and losing your wallet sucks ass.—
Esperanza Grace (@StumblingGrace) October 16, 2011

Then, she posted this. Please read it. Because I think all the times someone flaked on me, probably something like this was in the background. I also feel when someone bails on me, it’s a matter of bigger/better. Like, someone had a better time with someone more important than me. A social climber dumps me to hang out with a richer fish, a mom friend dumps me because I’m too…something. I have been so detached from people because of fear. My fear of rejection is huge.

So I hope maybe this story from three perspectives might help. Please don’t close your mind and heart to someone. Anyone. You probably don’t know what’s in their heart and in their mind.

For Bodega Bliss’s view of the failed sleepover
For Esperanza’s view of the failed sleepover

Time Warp Tuesday: “Climb Every Mountain”

I am way late to this week’s Time Warp Tuesday. It’s been a crazy week, and also the only post in which I’ve quoted lyrics was that darn Glee post, AGAIN! Sheesh! I just can’t get away from that particular essay. There’s probably a reason for that.

But then I had a few minutes to myself and realized that I often post YouTube clips of songs that are inspiring me in some way. And I remembered this post, about climbing mountains metaphorically and physically. Again with the mountains! I suppose I write about Glee and mountains a lot.

I note in this post that I loved the song “Climb Every Mountain” from Sound of Music when I was young. If I really remember watching that movie, which we used to do every Thanksgiving weekend, that is a false memory. My favorite real song was “I am Sixteen Going on Seventeen”. In actuality, it was my parents who always insisted on turning up the volume when Mother Superior began her song of chasing your dream. I always remember my dad saying that the actress who played her possessed a singular gift for vocalizing. But I wonder now if that beautiful lyric and melody combination was more effecting to them than I realized. That it probably spoke to them, deeply.

While most movies and songs focus on new love, young love, betrayals, love lost and coming of age stories, there is not a lot of material for the “middle”. Most of life is “middle”: enduring losses, working exhausting and mind-numbing jobs (if we’re lucky enough to keep them), raising children (if we are lucky enough to have them), going through serious trials like financial crunches, and just the tedious monotony of our incredibly demanding lives, whether it be getting up at 5:45 AM to begin our days of driving, working, meetings, children’s activities and the exhaustion we feel when we climb into bed at 11:30 to sleep five hours to begin it all again.

“Climb Every Mountain” speaks to the middle. The wise mother superior, who has probably seen it all (except Nazis, but alas, that comes later), advises the novice nun to:

Climb every mountain,
Ford every stream,
Follow every rainbow,
‘Till you find your dream.

A dream that will need
All the love you can give,
Every day of your life
For as long as you live.

See, what no one told me is that after you achieve the dream you climb the mountain EVERY DAY. I am incredibly fortunate to have achieved my dream of having a wonderful family. But my dream of having a family does NEED all the love I can give, every day of my life for as long as I live.

And so an important, ignored phase in the circle of life is given words in this song. And I am grateful for them, because I so often need help navigating “the middle”.

Art and Infertility

Long ago, when Darcy and I were innocent and carefree and full of confidence and hope and planning our perfect wedding, we went on a trip. This is when we lived in London and RyanAir offered incredible deals: we booked a flight to Forli, a quick drive to Tuscany, for $25 a person!

We stayed in a total and complete dump of a rental in the middle of a vineyard which sounds romantic and cool but mostly involved broken-down plumbing and 10 mile drives to grocery stores.

The best day of our trip involved a drive to San Gimignano, a beautiful hilltop town with medieval skyscrapers. It was a stunning and unique city and we wandered into an art gallery. Darcy comes from a family of art collectors and one of his relatives had told us they would gift us with a painting of our choosing.

I don’t know much about art. I know what I like. Darcy and I fell in love with a painting at this gallery, by an artist named Rita Pedulla. The gallery owners didn’t tell us much about her, except that she was 35, had just had her first baby and was newly interested in women and fertility. Um…

I was so incredibly clueless at the time. While I had had intuitions that I was not super fertile, I had not spent much thought on getting pregnant.

And so, we bought this painting.

Oh, the irony.

Eventually we moved back to the states and moved into a new home. We were so excited to hang the painting in our bedroom. We thought it would inspire us and bless us. Oh, how wrong wrong we were.

During our housewarming party, a kindly friend noted the painting and said in a whisper: “It won’t be long now.”

Three years later we moved. Turns out I am as suspicious as a baseball player on an unholy streak. Once we moved into our city apartment, I banished the painting into Josh’s tiny office. It looked weird in there. But I wanted it nowhere near us and our procreation efforts. It mocked me. The painting of a round and fecund woman, glorying in her own ripeness. Oh, how I HATED it. But we had paid good money for this large piece of canvas. I had deeply loved it. I remember the lunch where we giddily consumed truffle risotto and delicious bread and discussed buying a piece of art worth more than one month’s rent! How indulgent it had seemed. How young, naive we were.

Once the twins were born, I didn’t feel so mad at the painting. My stomach had swelled. I had been that round. The painting did not fill me with longing and envy anymore. We put the painting in a place of honor, in our living room. It had endured the pain, the exclusion, the sadness of our loss of innocence, our joy at conceiving.

Then: I got pregnant naturally and miscarried. I was soured once again on the painting. But I kept it in our living room, this time.

We are changing our living room and putting our TV where the painting now hangs. There is nowhere else for it to go except our bedroom. I would rather eat dirt than hang it in there. Why?

Tonight I looked at it deeply for the first time in years. I noticed that the fertile woman has a platter in front of her and the piece of fruit on it appears to be a pomegranate. That’s quite odd.

Who knows what the artist’s true story is? Maybe she went through years of infertility and rejoiced in her sudden plumpness. Perhaps she chose the pomegranate very, very carefully. Perhaps she placed that piece of fruit very deliberately on that platter, as a symbol of hope, joy and enduring belief in faith that we can somehow achieve our vision of becoming a mother, no matter how motherhood is achieved. Maybe the painting is a metaphorical vision of women before they conceive or adopt.

That’s what I am going to choose to believe. Because art is ultimately a reflection of what both the artist intends and what the viewer interprets. I choose to believe, today, the hopeful version of the fecund woman because it makes me happy.

Has your battle with infertility made you suspicious?

Time Warp Tuesday: My Favorite Post, Ever

I’m trying to break out of a funk. I can’t think of a better way to do so than participating in the lovely and talented Kathy’s Tuesday Time Warp.

Today’s challenge is to choose your favorite post, EVER. I have a few favorites. (My Glee/Middle essay came immediately to mind, then I realized that I chose a post about Glee last week. Um, I didn’t think I was a Gleek, but clearly I am!) But today I wanted to highlight something a little more upbeat and inspirational.

A few weeks ago, Lori published the results of a blogging survey, and the results were quite surprising. One of the standout findings was that many bloggers reported they received the most comments on posts which they wrote quickly. That’s certainly true for me. I lavished hours and hours writing, polishing and editing this post. It’s not quite as subtle as I planned in my head, but I love the idea of rediscovering that childlike enthusiasm for adventure I used to possess.

We are having some unseasonal rain, and today I looked up at the hillside the pre-school is nestled into. My favorite neon green was not painted onto the hills: that particular hue takes many days of heavy downpour to achieve, but for a moment I remembered the color and the post. And I had a twinge of that special feeling of possibility and dreaminess. It was lovely.

The Past I Don’t Speak About Here, And Why

I really wish that I had found the ALI community when I was pursuing ART treatment and during the hell that was my life during infertility. It’s odd to be a blogger after the fact.

April has posted two incredible, brave posts about how infertility has made it very hard for her to connect with the outside world. I cannot express to you how courageous I think she is for talking about this.

I have bragged about how rad my twenties were. I had tons of confidence and everything went my way. Until it didn’t. I was diagnosed with a really strange medical condition at age 31, exactly a year after being married, right when Darcy and I had decided to try for a family. I haven’t talked about that here, and someday I will but not today. It lasted one year, almost exactly, but completely totaled my self-esteem, sense of adventure and belief that everything would always turn out my way. I had to go on disability leave. I went from being a vibrant workaholic winner to a shut-in. And I don’t use that word lightly. I did become a shut-in.

I decided to work full-time for our family’s home-based business, and I did that quite successfully. As soon as the medical condition lifted and I was cleared to start a family, I entered the world of trying for a baby with absolutely no confidence. Soon six months turned into one year with no results (not one BFP) and I knew. I was already alienated from most of my friends because of my medical problem from 2004 which had turned me into an invalid, and all I heard from them now was about their own pregnancies and BFPs and babies and shower invitations and christenings and brises. During that miserable year of 2005, 17 friends announced the birth of children.

People talk about women’s biological clocks ticking. Mine was a loud, metallic gong. Even worse, Darcy’s was the countdown from the James Bond movies: “4 months, 3 months, 2 months, 1 month AND COUNTING!!!” Strange how he, the one I had to convince to have children, suddenly had to have children YESTERDAY once the process began. But he’s a super successful perfectionist who drives everyone around him to do things no one thought possible.

2006 was a frantic, desperate nightmare of a year. I didn’t leave the house except to go to the infertility clinic. We decided our home was cursed and moved to an apartment in the city. 3 IUIs, nothing. All tests were good. (And we did them ALL). But I knew. June 2006: IVF #1. Disaster. One egg retrieved and I was diagnosed with premature ovarian failure. Then a miscarriage.

The news, more out of my power than any that I have received since to date, sent me into a spiral. I didn’t want to be anywhere I could feel out of control so I didn’t go anywhere. Darcy refused to accept the failure of my reproductive system. I was ready to exit the game, move onto egg donation or adoption. Those were options he was unable to accept. So we were stuck in a wary game of chicken.

I took a break from the infertility clinic and just worked, really hard. At home. At least I could make Darcy proud of the work I did there. It wasn’t enough. Every day I woke up knowing I was an enormous failure. Men can’t go to Carfax and check if their partner’s bodies are lemons before they marry them. I was a lemon.

Finally, we decided to try IVF again. No dice. And finally, one last time in Feb 2007.

IVF #3 worked but the pregnancy was fraught with risk, worry and bedrest. Once again, I was a shut-in. I went to one wedding and my own baby shower. Other than that I went to our local grocery store and my doctor and the hospital.

Then my beloved twins, the lights of my life, were born, healthy. I thought that would be my release from my home prison. I had finally triumphed over my crappy body! Life was good. I spoke to former co-workers, contacts. I could re-enter my old career, but the hours would be 80-90 a week and Darcy already worked more than those hours. His career offered a higher rate of return. So who would watch the kids? We don’t have family who would or could do childcare.

That was almost four years ago. I am still at home almost all of the time. For the most part, it’s everything I wanted. But then I’ll have a week from hell, like last week. And my body continues to be a lemon. I get tired too easily, get sick too often. I’m a bummer more often than not. At weak moments, I get sad I don’t globe trot, have a nanny, or write about my $175 (obviously non-existent) sea salt or see an awesome band in the lobby of my NYC hotel or live the “Dream”.

The truth is tragedies and hardships effect us in ways we would never know or could imagine they would. For me, they made me not want to leave the house. And I’m glad I realize that. Thank you, April, for helping me to “get” that. You are not alone. You are not alone, at all.