Tag Archives: Infertility

Take THAT, Mainstream Media!

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Have you read Mel’s takedown of The New York Times and their obit of the late, great Dr. Edwards? It’s pretty bad-ass.

The Grey Lady’s coverage of all things infertility is strangely skewed, as we know.

The good news? We don’t have to take it anymore.

Recently, there has been a very welcome influx of books and articles doing their best to demystify infertility and adoption.

Books:

Lori’s book, called The Open-Hearted Way to Open Adoption. came out last week. I’ll be participating in a book tour later this month but here’s a quick preview: this book deserves to be a classic in the parenting genre. Pragmatic and philosophical, it’s a roadmap and a how-to guide in one great book.

Leah’s book Single Infertile Female: Adventures in Love, Life, and Infertility came out this week. I will be reading on the plane to Berlin this week. Here’s the description:

“First comes love, then comes marriage, then comes a baby in the baby carriage.” That’s how the story goes, right? We all grow up hearing the same fairy tales, and imagining the same futures. But what happens when the future you have always pictured for yourself is ripped away before you ever even get the chance to pursue it?

Pretty gripping right? Leah’s book has been burning up the Amazon charts, and I can’t wait to read it.

In the works: Kathy mentioned on my Too Many Fish to Fry Facebook page that she is working on a memoir about her experience with neonatal loss and secondary infertility. This is much-needed because there is so little out there for those going through secondary infertility. (See the discussion on my FB page for the unique challenges facing those going through secondary infertility over there…)

Non-Infertility Books by Infertility Writers:

Measure of Love, from Melissa Ford. I’m also going to be reading this on the plane to Berlin. I loved her first book Life From Scratch (think Jane Austen for the 21st Century) and this is its sequel.

Minotaur, from April Cross. April just published this book, the first in a proposed series featuring heroine Pricilla Sharp. It sounds intriguing.

Articles:

Did y’all know Keiko is now writing for Disney Baby? She’s been writing about women who have gone through infertility, too, like The Maybe Babies, whose baby was just born after years of heartbreak. Keiko + Disney = a huge win for us.

The Ricki Lake Show blog featured this post by David Vienna about dealing with infertility, which was touching and moving.

And the Boston Globe had a much more fitting obit for Dr. Edwards.

Web:

Kymberli has launched a new site called JUMP! 1000+ Reasons to be Happy! just in time for National Infertility Awareness Week. In fact, my son is one of the “jumpers” featured. I tell the story of how a Slip ‘N Slide created joy for both my son and myself and helped heal my heart after my battle with infertility. There’s lots more stories there too and it’s a really cool project.

And speaking of healing, PAIL just hosted a “Healing Week” which addresses how those parenting after infertility deal with the scars of the past.

Pamela and Keiko participated in a RESOLVE New England project called “A Conversation on Life Beyond” children, which tackled life childfree/childless after infertility.

I’m sure this is just the tip of the iceberg: please feel free to add anything I have missed below, and I’ll be happy to add it to this list.

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Filed under Infertility, Parenting After IF

Faces of ALI: The Unique Hell of Secondary Infertility

Esperanza

One of the known media narratives, illustrated here (and in the subsequent interview by Terry Gross on NPR) is that, well, men and women getting old causes infertility. There’s a bit of a “blame the victim” mentality here: men and women should forget about societal norms and careers and graduate school and get their family planning on YOUNG.

Esperanza’s story is the real world example of what happens when a well-educated woman in a circle of other well-educated professionals values having a family above all else. And what happens when infertility happens to young people, anyway?

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A Born Mother

Esperanza’s life has been shaped by two major factors. The first is her love of children. From a young age, Esperanza knew she wanted to be a mother. She loved everything about babies and children, and she was a natural around them. She was the girl who would rather babysit than hang out with friends. All of her after-school jobs were childcare related.

“When I was little I wasn’t all that into Prince Charming. I didn’t really think much about whether I would eventually find the perfect guy. When I fantasized about the future it was children I saw. I assumed I’d have them with someone I loved but I didn’t think much about what that person might be like. I just really didn’t contemplate marriage all that much.”

The second factor is the reproductive history of her mother.

“My little sister died when she was two months old (I was two). She was born very sick and never left the hospital…

After that my mother lost three pregnancies – each at five months. All boys. I’ve visited my sister’s grave often. I don’t know where those babies were laid to rest.”

Esperanza was a girl who wanted more than anything to become a mother, yet she knew how hard this goal might be for her to achieve.

***

The Prom Queen

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Although Esperanza was a high-achieving student, eventually admitted to one of our country’s best universities and was also, literally, a prom queen, she felt different from her other friends and schoolmates who had other dreams. Dreams of exciting careers, romance, love and adventure.

Esperanza’s more down-to-earth dream was having a family of perhaps two or three children. She took a job that would support her goal. She chose to be a teacher because of the flexible hours and vacations. And she looked for a mate, someone who would also want to build a family. Someone kind and gentle and principled who would be a good father. But someone like that was hard to find within her circle of friends in their mid-twenties, who were more interested in partying and traveling and having a good time than settling down. She began to despair. It wasn’t until she was 25 that she met her very first boyfriend, a man she calls Mi.Vida. Mi.Vida was kind, loyal and he loved her. But Esperanza soon found that Mi.Vida was not ready to jump into the parenting waters as quickly as she was. She had to decide: should she wait it out? It had taken her so long to find someone. She decided to let Mi.Vida know her strong interest in having children, so he knew her goal early on. They stuck together and after two long years of conversations (and couples counseling), they decided to start building a family together. They were 28 years old when they went down to City Hall to cement their commitment.

Esperanza was worried when they started to Try To Conceive (TTC) because she had suffered from amenorrhea, which is the lack of regular periods, and this was yet another reason she wanted to start building her family as quickly as she could. To prepare her body, she began a strict regimen of traditional chinese medicine, yoga, whole foods and accupuncture three months before TTC. To Esperanza’s shock and surprise, she got pregnant within six months. But her surprise soon turned to sadness when she discovered her pregnancy was not viable: it was ectopic and life-threatening. She needed emergency medical measures performed. Grief quickly turned into panic as she remembered her mother’s horrible history.

What is an ectopic pregnancy?

It was a blow, to say the least.

It took time to recover from her physical and mental anguish. Making it worse was when she reached out to friends for support, she was rebuffed.

“The struggle to start a family is not something our society shares. We would, and do, share the start of our family with the world when the word struggle is not included; but when that word finds its way into the experience, suddenly we are shut down.”

Gearing up to try again took courage, but anyone who has ever met Esperanza knows she does not lack for that. Four months later, she was pregnant. Nine months after that, she gave birth to her daughter Isa.

She was the youngest mother she knew.

***

Oh, The Places You Won’t Go

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When you have children young within your circle of friends, it’s a more difficult transition. Your peers are out making careers happen, advancing by working crazy hours, networking at parties, building a savings account. Traveling, having adventures. Going to concerts.

Mi.Vida had a difficult time with the transition of being a young parent. Mi.Vida has a passion for indie music, and produces several important and influential music events in their urban area as a volunteer project, in addition to his important work for a non-profit. He didn’t want to give this hobby up: he had after all become a father younger than he would have cared to.

Esperanza thought it was important to give him space. She was settling into being a mother, too. It was a constant struggle to make ends meet. Neither of them were in a place in their careers where they had room to breathe financially. Esperanza longed to eventually become a SAHM. But the area where they live has the second highest cost of living in the country. They considered moving, but all of their immediate family lived in the area and provided help with childcare and invaluable love. It was a tough decision, but they decided to stay.

As Esperanza entered her thirties, she began to talk more about having a second child. The longer she waited, the more panicky she became.

“There is a part of me, the part I believe is driven by my biological imperative, that wants to have a baby right here and right now, come hell or high water. This voice oscillates between a loud shouting and a quiet whisper and is fairly persistant, though frequently drowned out by the day to day.”

But Mi.Vida was resistant. They went to couples counseling to speak about the difference between them. Mi.Vida was fine having one child, Esperanza was not. Slowly they worked towards closing that gap: compromises were made on both sides. Esperanza agreed with Mi.Vida that they would live in the city permanently (something she wasn’t keen on), and Mi.Vida agreed they would begin to try to conceive soon. Eventually, Mi.Vida expressed his own desire to have a second child:

“He mentioned how much he loves being a father, how he appreciates the challenges of parenthood even if they sometimes feel overwhelming; while he misses the lazy carefree existence of life without kids he also values all he accomplishes as a father. He says he loves the connection he has with Isa and looks forward to nurturing a similarly fulfilling relationship with another child. He also says, for all its nuanced complexities, that parenthood has brought us closer together and he wants to build our family knowing that we, as a couple, will grow too.”

They were ready to try again.

***

Hardcore TTC

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Esperanza quickly took control, using temperature charts to figure out when she was ovulating. She honestly described the not-fun methods of lovemaking and timed intercourse and the stress of having to time it all perfectly. The stress that it took on their relationship. And as each month passed, she began to worry. Why wasn’t this happening for them?

When nine failed cycles became ten, and ten became eleven, she realized that they would soon fall into that dreaded statistic: those who have failed to become pregnant after 12 months of trying. Those couples are advised, if they are under 35, to seek fertility testing. So after the 12th cycle, Esperanza made the appointments for the testing: an Hystosalpingogram for her to test whether both of her Fallopian tubes were open, blood tests to check her hormone levels of CD3, FSH and E2, and an appointment for Mi.Vida to check his sperm counts and motility. She felt pretty confused.

“For the first time since I started building my family I have no idea what to expect. For the first time, I don’t have any expectation of getting pregnant. I haven’t counted out when I’d be due if I got pregnant during the next cycle. I haven’t wondered what I’ll do about maternity leave or taking a year off of my job. I haven’t made any possible plans in my head, I haven’t laid out any probable futures in my mind’s eye. In that place where all those dreams used live, there is only emptiness.”

She thought that the results would probably be normal. She suspected she might be faced with a diagnosis of unexplained infertility. After all, she had gotten pregnant twice in one year only a few years before. She thought the RE would give her a recommendation for a non-intrusive IUI cycle. Maybe a prescription of Clomid.

She was wrong. Dead wrong.

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Disaster

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The first result they got back was Esperanza’s HSG test. Both of her tubes were clear. Then she got back the blood test results. One of the results (the E2) was on the higher range of normal, and her RE advised her to get the AMH test, which is a more reliable predictor of ovarian reserve. (How many eggs a woman has.)

Meanwhile, Mi.Vida’s results came back and they were not normal. Almost all of his counts: numbers and motility, were low. More worryingly, traces of blood were found in his sample. He was advised to see a urologist.

Then came the deadliest blow: on a Friday morning on a cold January day, the RE called Esperanza to tell her the results of her AMH test. The number was shocking: .59. The RE told her she had the ovarian reserve that he would expect to find in a woman who was 42-45.

“He also said that while he can’t predict I’ll start menopause when I’m 40, it could mean that. This isn’t just about my desire to have another child, this has lasting health consequences.

When I google ‘AMH under 1’ I find a lot of stuff. All of it is depressing. Some of it is terrifying. Women who only retrieve one or two eggs during IVF. Young women – in their twenties – being advised to use donor eggs immediately and not even try with their own eggs.”

Esperanza is only 32 years old.

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What’s Next?

Esperanza and Mi.Vida will be seeing their RE this week. Their RE has recommended moving right on to IVF.

But IVF is beyond their means. Already financially exhausted by the struggle to be young parents, they are tapped out. They have had to explain to friends and family who have urged them to “just adopt” that adoption is twice the cost of IVF, at least.

What is IVF?

***

The Unique Hell of Secondary Infertility

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Secondary infertility is a unique kind of hell. Many who are going through infertility want one child so badly. You worry you will offend them with talk of your desire for a second child. You have a child already. Doesn’t it seem greedy you want more than one?

And yet in America, almost no one has one child. The average family has two children. So everywhere you go, you are surrounded by families with two kids. Announcements on Facebook of second children (or even third or fourth children) are everywhere you look. Grief is everywhere.

Of all the people I have profiled, Esperanza’s story has been both the easiest and the hardest to write. Esperanza is my best friend. I was also diagnosed with premature ovarian failure at age 32. I never thought the same thing would happen to her. It kills me that this is happening to her. She came to help me with my son’s birthday party back in November. While the rest of the parents and I chatted, Esperanza jumped in and played pirates and balloon swords and gave a merry chase while we looked on, exhausted.

My friend Roumi said: “She’s a mom, right? I hope so. She’s a born mother.”

And so she is.

To read more about the remarkable Esperanza’s journey, please go here.

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Filed under Faces of ALI, Infertility

Submerged

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Some blog posts provoke me, some make me think, some I remember for years, some make me laugh.

No post I’ve ever read since I started blogging in 2010 has ever gotten under my skin like “Submerged” has. I think it’s the single most powerful piece I have ever read about infertility.

PLEASE, go here and read this extraordinary essay. I will wait.

Esperanza alerted me to “Submerged” earlier today. We have both been marveling at its power. Obviously Tutti, the writer, is in a really sad and tough place, and expresses her story so eloquently and empathetically. But it’s more than that. Much, much more.

I think “Submerged” touches upon a universal truth that so rarely comes across. This truth is obvious but often obscured by the secrecy inherent in the disease and it is simply this: infertility is completely fucking tragic. It’s so tragic that the greatest romantic love might not be enough to withstand the heavy burden of loss and devastation that accompanies it. It’s so tragic that people so full of promise and life and beauty and love become invisible, caught beneath the surface of life.

Part of the power of “Submerged” certainly comes from the image of the author and her husband underneath the water. They look incandescent, not of this earth, timeless, eternal. It’s a haunting picture I will never forget.

I’m sure like great art, “Submerged” will mean different things to different people. Some will take away the metaphor of infertility being like you are underwater, suffocating, removed from life on the land. It reminds me of the great Hans Christian Andersen (not the Disney) story about The Little Mermaid, destined to watch her dreams and desires but always from a great distance, under water or at the surface.

For that is how infertility felt (and still feels) to me. I guess as an infertile, I am like a mermaid. It’s not possible for me to walk on land and do things that come naturally to the mortals who are earthbound. Bargains needed to be made, lessons learned, relationships tested in the most severe of ways for me to achieve my one dream of happiness. Infertility is a curse. And worse, so often it is a silent curse, one that cannot be revealed to those around us. So those who suffer from it are doubly afflicted.

I wish that the mortals happily walking the land could read this story and comprehend its truth. For infertiles are so often at the mercy of fate, of sea witches.

And so often, no one knows.

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Filed under Blogging, Infertility

“The Air Fell Empty”

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“…there was nothing we could do, and the air fell empty as it had been before we came…”

Per Petterson, Curse the River of Time

The above quotation describes a failed political demonstration, one last gasp after years of similar demonstrations have made no impact. When I read this, my chest felt tight. I worry that the air will always be empty when it comes to education about infertility, loss and adoption.

I understand this post may upset some or even many but after two years of plugging along trying to make a difference, trying to use words (my weapons of choice) to convince, persuade, create empathy and aid political action along with many others, I feel like very little has changed. Small victories yes (several thanks to our own Athena Keiko Zoll): the PETA protest, the New Hampshire bill not passing, the Ricki Lake rebuttal, the positive education I think Bill and Guiliana Rancic have done. But for each small tick in the box, there are many New York Times (our newspaper of record) articles marginalizing the suffering and focusing solely on the sensationalistic issues. Despite my series, I haven’t seen one sympathetic profile of just a woman or man going through infertility and what that it is like in any mainstream publication. Instead, we read this.

As ALI bloggers, we preach to the choir, and it is of comfort that there are others out there suffering too who can lift us up.

Yet for every blogger seeking comfort, at least 3,000 of them on Mel’s blogroll, there are literally millions more suffering in silence. We all know the numbers. I was once one.

This is going to be controversial, but I have to say that it seems the national institutions that are supposed to be helping are somewhat aloof, or maybe they are tied down with their own problems. Maybe the traditional media is drowning them with stories they are constantly responding to, but I have to say that other than pleas to call my local congresspeople (which I faithfully complete) I don’t feel a lot of momentum from them. There’s no electrifying force behind them, like, for example, the grassroots movement that got President Obama elected. Why? So many of us are passionate about educating others. I think if we could be mobilized, maybe we’d have a chance.

I don’t want the air to be empty. But sadly, I worry it is.

Infertility, by most accounts, is only going to affect more people as time moves on. Why do so few people seem to care? Why are our cries deafened by the night? Do you think there is anything we can do?

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Filed under Infertility

How Can We Educate the Public About Infertility?

I was a guest on the Bitter Infertiles podcast on Sunday. Boy, I miss those girls!! This blog has become such a mishmash of fashion and infertility and even lifestyle posts. But it’s important for me to note that it started as an infertility blog, a personal diary detailing my own journey with loss and then became something else: an advocacy tool to try and publicize the real ALI stories out there: the ones no one hears about. The ones 1 in 8 are struggling with. Your friend, your sister-in-law, your colleague would tell you these stories if they could.

My experience with the Ricki Lake producers was really wonderful in the end: they publicized my blog post about Faces of ALI on their site via Twitter and so much traffic and wonderful emails and comments came in. There was no negativity. And it made me wonder: perhaps there needs to be a SHIFT in the way the story is told to the media.

It was quite clear at BlogHer that Martha Stewart, Katie Couric and even the Today show are increasingly looking to bloggers to tell the stories. Katie Couric actually asked us to pitch her stories about untold issues Americans are dealing with: Kathy Benson and I both tweeted about the ALI community.

I am a former PR person who dealt with product launches, political campaigns, controversial issues and even court cases. I was quite good at my job, actually.

But things have changed. I was listening to NPR this morning and there was an interesting debate about peer-based platforms and how they have grown. Silicon Valley has established a totally different way to run things: more bottom up, with engineers more in power and a less top heavy structure.

This was on top of another NPR story about a preponderance of evidence that statistics don’t change people’s minds: STORIES do.

It made me think: We need to tell our stories, sell them even, to media outlets who are open. And it seems like a lot of them are open.

Because here’s the thing: all of our stories are full of the human experience. Our stories display great hope and love and dramatic arcs. I feel like one story could occupy the gifts of some of our greatest storytellers. Our ordinary stories are not ordinary at all: they are extraordinary. I know that reading Faces of ALI changes viewpoints: that NPR story is right.

There was some talk about putting together a blogger platform (a peer-based platform, as it were) as a place for us to tell our stories and share them with others.

What do you think? Can we change the crappy narrative currently being told? How? What ideas do you have?

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Filed under Faces of ALI, Infertility