Submerged

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.
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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.

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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.

A Glimpse of What Was

Our basement is finally being rebuilt after our recent plumbing catastrophe. Today was, as our contractor gleefully informed me via email, “Jackhammer Day!” I was instructed to be gone from 9-5.

I picked up the twins from pre-school and took them to The Cheesecake Factory to kill some time. There wasn’t much parking, so we walked quite a distance to reach the restaurant.

It was raining, and we all had on our galoshes and raincoats, and we were all merry in spite of the grey of the day. I held each child’s hand, as there was some traffic. We rushed towards several puddles together and splashed in each one, laughing each time. I had listened to an interview with Temple Grandin in the car and she noted an urge lately for people to “prettify life.” Which I think is probably true, given the beautiful photos I’m drawn to on Pinterest. Sometimes though, a moment doesn’t need prettifying. It’s movie-ready, primed for a greatest moment montage of your life. I imagine I would remember this puddle moment if “my life flashes before me again” like it did during the world’s sketchiest take-off.

Aside: When many planes don’t fly into an airport because of “too many issues” (cough*Innsbruck*cough) and you hate flying, please oh please take a train from a nearby city. Before departure from Innsbruck, our pilot quite calmly stated that due to the fact that physics dictated our plane must be as light as possible to clear the Alps with the current wind-shear, they would be loading off all of our luggage onto another plane. That made me extremely nervous. Then we hit so much turbulance on take-off that the engines actually whined then rattled (like in Indiana Jones and the Temple of Doom when all the engines died) on my side of the plane. Darcy looked earnestly at me and said: “You know, I really love you.” Which he NEVER says. And then I was watching my life in fast-forward: I saw quick glimpses of my childhood backyard, my beloved metal slide, our Christmas Trees, holding my brother after he was born, a report card with straight As, my parent’s faces when I graduated college, holding the key to the first car I ever bought myself, the moment I met Darcy, and his face when he was on his knee asking me to marry him, the Eiffel Tower glistening in the background. All that in a few seconds.

And because life never lets one forget, as we were still frolicking in the last puddle, I suddenly stopped cold. My spine tingled with dread and then I spotted them. A young couple was walking towards us, she was wiping away tears and they were clinging to one another as if they were drowning in the heaviest gravity. The very gravitational force they were inhabiting was not the same as the one the children and I were in just yards away. And I just knew: she had had a miscarriage. I tried to quiet down the rowdiness of the kids, to respect the heavy sorrow, so weighty it could anchor a battleship, that had so thoroughly pervaded the whole parking lot. As children are wont to do, they ignored me. I nodded to the couple, and while they didn’t even seem to see me, the woman turned as she walked and shot my daughter a glance so full of sadness, envy, disappointment and anger I was visibly shaken.

Tears formed in my eyes, and I was transported back to those awful days immediately following my losses. Part of me wanted to follow her and say: “Have hope: I went through what you did and these children were fought for with all the power I could muster.” But I know I can’t predict her journey. There are so many ways her life could play out and all the paths could be fulfilling to her. I wouldn’t be of comfort in any case. There was nothing I could do.

All I could do was hope that tonight she is writing about her experience, maybe even telling about the salt in the wound of seeing scampering happy kids. And somewhere, whether it is on a forum, Twitter, or a blog, I really hope she is being comforted by those many kind souls in our community who band behind one another during these awful moments.

I wish her to know she is not alone. I too, was once there, in that gravitational force of doom. I will always have my hand out for her and you all.

I was once drowning in grey while all around me, people created the memories that will flash before their eyes before they die.

Remembrance

Today is National Pregnancy and Infant Loss Remembrance Day.

I only know what it is like to lose a pregnancy. I’ve lost two.

The only evidence of a child who was much wanted and lost. RIP Babies Jaffe, 3/12/2006 and 3/6/2010.

How to put into words what it’s like to lose a pregnancy? It laid waste to my world. Twice.

In February of 2010, I found out Darcy and I had conceived a child on our own.

The discovery was so specifically wonderful: I loved being a mother so, so, so much. I was thrilled. But I was scared. I knew how easily pregnancy could be snatched away from me: I’d had a miscarriage in 2006 before the twins were born. A “chemical pregnancy,” whatever that is.

It didn’t feel like a chemical pregnancy to me. It felt like the very ruin of my life, the ruin of hope, success, my very lifeblood. We visited Rhodes shortly after, and I was struck by the stark, crumbling, ancient city battlements. They looked like how my soul felt.

The best moment of that trip was when I discovered beautiful flowers blossoming in the cracks of the ancient, war-torn, forlorn walls of that citadel. Somehow, joy finds a way. A way to survive.

I remember. I remember our lost children. I remember the blossoming of the love we both had for the world, for the future. I remember how much I loved Darcy: how much I wanted our love to endure. I remember hope.

I remember, because if I don’t, no one else will. I remember, because I want to tell you all, the 1 in 4, you are NOT alone. We all remember. I remember, because these brave women have inspired me to remember.

I remember, because love is never wasted. It will endure. I will love those children for as long as I am here, on this earth.

I love them. And I always will.

Is Miscarriage Finally Becoming Less Taboo?

Ann Romney gave an interview two days ago talking about the fact that she has had several miscarriages. She described the impact of one in her forties in this clip here:

Ann Romney Talks About Her Miscarriage

It’s moving and sad. I am very, very glad to see that she has chosen to talk about this topic and the devastation it causes families, regardless of my political affiliation. This was brave of her and I’m happy she did it.

Unfortunately, the coverage of this clip has attracted negative headlines: “TMI?” says the Associated Press. “Oversharing?” asks The Washington Post. Worse, there is mention that this “oversharing” is a cynical attempt to win over women. I don’t think these articles are very different than this reprehensible MacLean’s piece.

Obviously, the Republican party’s stance on infertility in general and personhood in particular scares the heck out of me. But I am going to put that aside a minute to ask a question: Do you think that maybe the taboo on talking about miscarriage is lifting?

There is another development that I find cheering, and that is the the rise of this project, which has quickly gained public support and the endorsement of Nigella Lawson and Jools Oliver. (Wife of Jamie Oliver.)

We are overjoyed to announce a new Saying Goodbye Ambassador – NIGELLA LAWSON – So proud to welcome you onto Team SG -www.sayinggoodbye.org

— Team@SG (@SayingGoodbyeUK) August 10, 2012

@SayingGoodbyeUK proud to b ambassador for this vital&amazing cause so important to support Team SG well done gang x

— Jools oliver (@Jools_oliver_) August 30, 2012

What’s unique about Saying Goodbye is that they offer non-denominational services for anyone who has lost a child at any gestational age. In a way, it reminds me of the Japanese cultural of Mizuko.

I spoke with the leader of Saying Goodbye via Twitter today and she said that they will be launching their service internationally and in America soon.

I’ve had two miscarriages, one a “chemical pregnancy” (I HATE THAT TERM) during an IVF cycle and one from a spontaneous pregnancy in 2010 at 8 weeks. Both were devastating. To hear from Ann Romney, Nigella Lawson and Jools Oliver that I am not alone in very public ways is comforting to me, I must admit. And I hope that this is the beginning of a cultural acceptance of talking about loss.

Do you think it is?

The Devastation of Pregnancy Loss: A Profile of Courtney Cheng

All photos copyrighted by Bodega Bliss

On January 24, 2010, Courtney Cheng started a blog to document her pregnancy to friends and family members who lived across the country. The first post on the nascent blog, which she titled Bodega Bliss after the idyllic Northern California hamlet where she had met, married her husband and settled down in, was called “Just What the Internet Needs” and announced her new hobby: she would be a mommy blogger. The post was self-deprecating and full of the usual sentiments a mother-to-be would feel: hope, fear, excitement and joy.

“I’m feeling all kinds of emotions. A little scared for how much our life is going to change, excited to go on this journey only given to women, I’m even looking forward to watching my body change (I say this now still looking exactly the same way I did a month ago). And I’m hoping you’ll be there with me during the whole thing.”

Cheng, then 29, posted a photo of herself and her “bump” at 6 weeks, a positive pregnancy test and a list of her symptoms. (Tears after hearing Tegan and Sarah’s “Where Does the Good Go?” and feeling tired.) There were a few tussles with her insurance coverage: she was denied basic health services because of an abnormal pap smear she had received 6 years ago. Then her husband, Tim Cheng, posted his own whimsical take on the thrill both parents-to-be were experiencing on February 7, 2010:

“My gal is pregnant and loves random names like Sophielillla Jackson and such. No not really, my favorite name so far is Finn. We are stoked. We have a walk-in closet that Court thinks might do as a room for the kid. That’s great, we will stick the child in there with the jackets, it will be warm. I like how she’s always giving updates on what is developing inside. She’s doing yoga which is great, I’m proud of Mommy. We’ll keep you updated on when Sooophillilla or Napoleon is born. Or plain Jim.”

This innocent and carefree post was followed by an excruciating untitled one seven days later, on Valentine’s Day of all things. This haunting entry, untitled as if the subject matter was too awful to deserve to be named, describes in terrible and honest detail the physical and mental anguish Courtney felt as she miscarried her first child:

“When I had woke up that morning I had my hands on my belly and had mentioned to Tim that I could feel my pulse in my uterus. I thought it was just the blood going to my baby helping it grow, but I realize now that’s not why the blood was rushing there. Tim was here with me when I passed the tissue our baby. I can’t tell you what that felt like. In between my shaking and sobs, I wanted it all to be a nightmare. This wasn’t how I was supposed to be having our baby, this wasn’t supposed to be happening.”

The next few months of her blog, Courtney alternated between apologizing to her readers that she was so sad and promising them she would feel better and describing how the loss effected her in stark outlines:

Even when I’m covering up the sad like today, I still just want to be pregnant. I want to be having that baby that I’m not having any more and is buried beneath a tree. It’s just not fair.

Courtney had not expected her optimistically named blog to turn into something else altogether: a diary of what it was like to go through a miscarriage. There was a little good news sprinkled in those first six months of writing: Courtney had finally gotten full-fledged health benefits through her employer, a non-profit agency. She had been forced to go to a clinic populated mostly with meth addicts because of her lack of benefits before, so she was hopeful about seeing a real OB-GYN in a real practice.

On July 21, Courtney told her readers a shocking secret: she had been pregnant but hadn’t told anyone because she was afraid. Unfortunately, her fears were proved correct:

Without going into specifics, the baby most likely died somewhere around 6 1/2 weeks. I did see a heartbeat at one point, but it didn’t calm my fears of what ultimately turned out to be true. They did a D & C as soon as we found out; I was 9 weeks, 4 days.

If the first miscarriage had burst the bubble of Bodega Bliss Courtney the newlywed had felt, the second one was scary and disturbing on another level: something might be wrong with her body. She pressed her OB-GYN for testing and answers. The costs of the testing were not cheap and as a middle-class couple, those tests were an expense they were at a disadvantage to pay:

“One of the 12 vials of blood they’re testing has the description of “MTHFR” on the estimated price list for the tests. HA! And in case you were wondering what that MTHFR costs, it’s $390.00. Out of $2,721.75 for all of them. MTHFR!”

In addition, the D & C Courtney never wanted to have cost $15,628.16, and she was responsible for paying 25% of that fee.

The financial expense and personal tragedy were weighing heavily on Courtney at this point. She was constantly seeing pregnant women at the local grocery store. One small ray of hope: her OBGYN had found that the MTHFR test had come back positive, and while she was not a fertility expert and Courtney and her husband were without the funds to see a fertility expert, she said she would check with one and find out what this positive result meant.

A major problem for Courtney is that so little is really known about the condition she was most likely suffering from: Recurrent Pregnancy Loss (RPL). According to Reproductive Biology Associates, the definition of RPL “is two to three consecutive spontaneous abortions (miscarriages) before 20 weeks gestation. Sporadic Abortion: A single pregnancy loss is a common event occurring in 10-20% of all human pregnancies. Approximately 1-5% pregnant women have a diagnosis of RPL (40,000 – 200,000 U.S. couples/year).”

Another problem with RPL is what might happen next: “49% of women with two consecutive losses and no live-born children will have a loss in their next pregnancy, whereas 29% of women with two losses and at least one live-born child will have a loss in their next pregnancy.”

All was not hopeless, though: “Approximately 70% of couples experiencing RPL will have a liveborn child without medical therapy. Most of these patients will be under 35 years old.”

Courtney was only 30 years old. If she rolled the dice, she had a pretty good chance luck would be on her side. But the two losses in less than a year were weighing heavily on her.

“But some days are still really bad, the kind where all I want to do is curl up into a ball and let the tears fall. I want to cry for the unfairness of it all, for the social awkwardness and for being forced to give up my babies. I guess it could be the weather; this rain makes it easy to want to stay in bed and not face the world, to hide from anything or anyone out there that would remind me of what I lost. Maybe it’s why I don’t seem to want to go out any more. I’ve been perfectly content staying in every weekend for months now.”

Her blog was now what she would have never imagined it would be: a blog about recurrent miscarriage. But she was finding solace from the writing of others, like Kate Inglis from Sweet/Salty. And she met women in her area through blog exchanges. Her blog picked up a steady following of readers who were drawn to her excellent, spare writing and her story: her ordinary yet extraordinary experience with loss. Those readers were either going through ALI pain of their own or recovering from ALI trauma in the past. And she put into words what many of them couldn’t say or wouldn’t say.

She began Eastern medicine treatment, which was also expensive, but less expensive than the thousands of dollars she would have to pay for fertility treatments and consultations. She took folic acid, multivitamins, ate healthfully, exercised, didn’t drink.

Finally in May she found out she was pregnant for a fourth time. (She had also had a “chemical pregnancy” earlier.) She shared the news selectively and did not post about it. In fact, her readers didn’t find out about it until June 29th in a post chillingly called “Four”.

Four. I’ve lost four babies. That number is daunting. That number changes everything. At three, there was still a chance, my percentages were still pretty great. But four? At four they’re not so good. At four I have to start thinking that this might not happen for us. At four I have to start imagining alternatives – alternatives I never wanted to face.

To read Courtney’s blog from start to now is to understand, in words cherry-picked from a uniquely understanding heart, how the human spirit can endure so much in the quest for its heart’s desire. And how, sometimes, the heart just can’t take any more misery and tragedy. Sometimes, the orchestra music doesn’t swell, the happy ending we’ve grown to expect and want and desire, from Hollywood, from friends on Facebook, from classic literature thousands of years old don’t arrive. Our own endings get delayed somehow, or sometimes they arrive in a different form. Sometimes they don’t arrive at all. This period of suffering we in the ALI community go through changes us, probably forever. Loss is a tribal tattoo written secretly across the souls of those who undergo it. Most of us are quiet, but we will see in another’s eyes a signal of that tattoo we each carry.

The difference is, Courtney lays that tattoo bare for everyone to see, whether they are in the tribe or not.

Courtney’s story is in the middle: she’s in fact still paying the medical bills from her last D & C in June and more tests a reproductive endocrinologist did in August. The large community of bloggers who have rallied around her want more than anything for her Hollywood ending to arrive. But Courtney, with her unique voice and wisdom, says this:

If I really think about it, though, I do know one hope for 2012: find some freaking happiness. And not in the form of a baby. In the form of I’m-going-to-sleep-now-because-I-can’t-wait-to-wake-up-to-my-life kind of way….not the I-don’t-want-to-go-to-sleep-because-that-means-I-have-to-wake-up-again way of the past. Because that way is getting old. That way is so 2011.

And if Courtney’s words don’t reflect the triumph of the human soul, I don’t know what does.

UPDATE: I am thrilled to report that in October of 2012, Courtney Cheng gave birth to a healthy, beautiful baby girl.