Facing it Head On (& burning it down)

Throughout the years of infertility treatments, I never once read a book about the topic. No interest whatsoever. I didn’t want to read some bullshit “it only takes one egg” or “do these yoga poses and your eggs will magically reappear in your ovaries” inspirational publications, and I didn’t want to read a book by someone who got their happy ending when I didn’t know if I’d ever get mine, particularly since I knew that there were altogether too many publications of success stories and very few that revolved around the MAJORITY of women who undergo treatment and do not end up giving birth to a child.

Last week I packed up the last of our “kid stuff” into boxes – the books, the baby clothes and supplies, the handmade shell mobile, everything. If we get selected by a birth mother, then we will be like kids on Christmas morning, wildly opening our box of goodies, but until then, our focus has to be on each other. Our love, our life as it stands today, as two.

So I decided to be brave and, after reading a few articles by Miriam Zoll, got a used copy of her memoir, Cracked Open, and within 48 hours I had reached the end of the book and had read portions out loud to my husband at least nine times. Now that hasn’t happened for a long time.

You see, Miriam Zoll came into the infertility game around the same time as I did, went through multiple rounds of IVF, had a miscarriage at 9 weeks, and then onto donor egg IVF twice. All fails. Ultimately she and her husband ended up going through domestic adoption (sound familiar), and moving from the city to the country. While it’s not like looking into a mirror, it’s definitely one of those things that, based on her story and sense of humor, she and I could easily knock back a few cocktails, and yeah like a fangirl I totally want to hug her.

On Miscarriage

If a miscarriage has a sound, it is the deadening reverberation of a very heavy iron gate closing forever. On one side of the gate there is the life cycle, bright sunshine, flowing waterfalls, and the regeneration of plants, animals and humans. On the other side lie death and the universe and all of its black holes leading into the vast nothingness of billions of galaxies that exist beyond the tiny one that we occupy.”

On Marilyn Monroe

Since (Monroe’s) death, America’s mythmakers have linked her suicidal decline to her diminishing status as a sex symbol, her broken love life, and her addiction to pills. Rarely has anyone discussed she was over losing those babies and her chance to become a mother. Any woman who loses her ability to safely harbor new life – whether at seven weeks, six months, or thirty years – feels that loss with varying degrees of intensity until the day she dies. One might compare it to the universe losing its gravitational pull: suddenly everything spins out of control and planets and stars smash into each other. There is complete chaos and disorder, and life never quite reassembles again into that recognizable system of order.”

On the Addictive Nature of IVF Cycling

“We had in fact spent approximately 2,000 days trying, and here I was going right back for more. The donor’s faces were like heroin now. The fertility treatments were like the needle. Our fixation with having a baby had turned into an addiction. But the truth was, I didn’t feel desperate at that moment. That wasn’t the right word. I felt something else, something I couldn’t pinpoint. Part of what I felt was fear. Fear that I hadn’t tried hard enough or willed it enough.”

“When the science first failed us, we raged at the world and ourselves, and then sank into a deeper kind of denial, once laced with a dash of bargaining to ward off the impending depression that loomed like a dark thunderhead. This is the phrase that earns the global fertility industry its multi-billion-dollar annual income. I call it the Let’s-Just-Do-One-More-Cycle Phase. It lasts the longest and can bankrupt many couples in all sorts of ways unless they have the mental clarity and emotional wherewithal to push the eject button.”

On Grief After Repeat IVF Failure and Contemplating Ending the Journey

“Over the past year, I had allowed my old way of operating to completely slip away like a dead body sliding over the edge of a ship into dark deep waters. I became, in a sense, immobile. Not out of grief…I was too numb to feel grief. I was immobile because I was at a great crossroads. Biology was not dictating the course of my life as I had hoped it would. Ironically for the first time in my life I had actually wanted my identity to be defined by my female biology…Infertility had defined and shaped our lives and identities for five years. In a sense, it had given us a purpose and a goal I supposed I wasn’t ready to let go of that goal just yet, still wasn’t able to truly accept the fact that my body would not produce a child with my eggs or with someone else’s.”

On PTSD After Ending Fertility Treatments

“Having now stopped treatments completely, we were still slogging our way through the endless swamplands of “anger,” “depression,” and “acceptance.” We both wondered how long it would take for us tor each the acceptance phase and how many other couples were going through the same hard times.”

During waking hours, I was engaged in a constant, conscious exercise of weighting the good with the bad, of striking a balance. I was filled with hate and love, joy and dread, fear and adventure – all at the same tie. Finding equilibrium in the midst of this series of frenzied emotions was not easy…Anxiety spread over me like a silk shawl and nestled into the crevices of my brain. I so desperately wanted to feel that limitless optimism I used to feel but I kept slipping back again and again into the dismal abyss…it seemed I couldn’t reach acceptance until I burned through this blinding rage.”

On Waiting for a Birth Mother to Select Us While Grieving Multiple IVF Failures

The cynicism we harbored toward the fertility industry unfortunately spilled over into the world of adoption. We couldn’t help it. Neither Michael nor I actually believed a real live baby would ever end up in our arms; the whole concept was now as abstract to us as a Disney cartoon…Adopting a baby was a gamble and a risk, just as fertility treatments had been…It was a new deck of cards but still the same smell of a high-risk gamble was in the air, still the raw open wounds that come with being sucker punched so many times you couldn’t stand up anymore.”

Our quest for fertility had driven us further and further away from familiar surroundings. We now stood at a place where we had not stood before. Having nowhere else to place our feet, we had no choice but to jump and see where we might land.”

On Today’s Culture of Infertility

“While other generations shared legendary cultural moments like Woodstock and Burning Man, a growing number of my generation were bound through our experiences with reproductive technology. Everyone in that room had endured multiple cycles, some more than others. Collectively, we had spent millions of dollars and wasted decades of our lives trying to make babies in laboratories.”

Our Worst Discovery – the lie of DEIVF

Lots of head nodding as I read this book, but the devastation came in for me when she shared what she had learned through both formal and informal research about donor egg IVF. When I realized that all three fertility doctors/clinics LIED to me about our odds with donor egg IVF, my heart shattered all over again, in a way I still cannot quite properly describe.

You see, it’s standard for articles and fertility clinic websites to tell you that if you go over to donor egg IVF, your odds of becoming a mother skyrocket, with most touting ~60% success rates for one embryo and ~80-90% success rates if you transfer two embryos (whereas with traditional IVF, clinics usually publish success rates anywhere from 5-25%). They love to say that because you’re no longer using your own eggs, YOUR AGE IS NOT A FACTOR. Turns out this is a big fat fucking lie. Zoll spoke with a fertility researcher, who gave her the real deal on donor egg IVF for women in their 40’s.

“”Most clinics don’t tell you that you don’t stand a chance,” she said.”

We learned that the donor egg industry was earning $38M annually and growing by 6-8% each year. A 2007 New York Times article reported that out of 15,175 donor egg cycles performed every year in the US, 5,449 – roughly only one-third, resulted in live births. Our clinic optimistically shared with us their belief that woman in her forties had a 50-52% higher chance of conceiving using eggs donated by a woman younger than thirty. To average laypeople like us, these sound like great odds.”

Neither Northwest Fertility nor the first ob/gyn NOR the second opinion at Oregon Reproductive worded it even in that easily-misinterpreted way. Dr. Stoelk, who happily took over $30,000, depleting our savings account, actually WROTE DOWN in our initial consult the success rates being 60% for one embryo and 80% for two embryos. So when I blew through 9 embryos and lost our baby at 9 weeks (with no D&C to assess the fetus and find out what happened, something I didn’t know was fairly commonplace until months later) and he didn’t express any interest in finding out what the problem might be, my suspicion began to increase and eventually my anxiety and depression manifested physically, first as a herniated disc that one year later has not fully healed (still can’t do even a basic sun salutation, lift anything heavy or be on my feet for more than a couple hours without intense pain) then as a spontaneously torn retina that even the eye surgeon could not explain, merely referring to it as “idiopathic”, and finally into PTSD.

Most women in their forties have only a 1-2% chance of conceiving with their own eggs – which means donor eggs may increase their chances by only 2-5%…this misleading and mismatched bit of information made Michael and me wonder once again about how the industry and its clinics calculated its numbers and how we as consumers were supposed to decipher an interpret them.

If I had known this going into it, we could have saved ourselves two and a half years of brutal heartache. We could have adopted a child through the foster care system back in 2015 (who had considered our application “a red flag” because we were honest about trying to get pregnant and start a family in multiple ways). Coulda, woulda, shoulda. Nothing we can do now, but the fury at so much time and money wasted, so much depression and anxiety and weight gain and time in hospitals for back injuries and eye surgery (not free either), so much stuff that was so incredibly…preventable.

I’m on fucking fire, y’all.

Oh, she got both feet on the ground
And she’s burning it down
Oh, she got her head in the clouds
And she’s not backing down

 

 

 

 

  One thought on “Facing it Head On (& burning it down)

  1. November 16, 2017 at 1:57 pm

    A friend of mine just conceived at the age of 46. They gave up on the idea of ever having a baby after years of unsuccessful fertility treatments. Eventually, the child was conceived naturally.
    Life moves in mysterious ways. Don’t ever give up.

    Like

    • November 16, 2017 at 2:48 pm

      Your comment is so incredibly insensitive and inappropriate. Do a little reading about what not to say to infertile people and maybe you’ll understand why saying this kind of crap is completely uncalled for. You have no idea what you’re talking about.

      Liked by 4 people

  2. November 16, 2017 at 2:51 pm

    My heart breaks for you as I read this. It breaks for all of the women who have been lied to like you were lied to. It’s bullshit, and I’m so sorry you have been treated this way. (((hugs)))

    Liked by 2 people

  3. November 25, 2017 at 6:52 pm

    I came across your blog in the ‘motherhood’ tag on WP, and have very little knowledge about fertility treatments. But I hope you will write a book about your experience and can be an honest voice in the sea of money-hungry industrialists who will lie straight into the eyes of a woman with a baby in the sparkle of them. Zoll is a great writer. I had never heard of her today before you shared her passages, so thank you. I don’t know what else to say. In another post I read of yours you didn’t understand why people didn’t leave comments, and I get it (just wrote a post about it myself) but sometimes there are no words for empathizing with someone’s hurt or anger. What if a reader comments and says ‘the wrong thing’ out of ignorance, not malice? So people will just keep a respectful quiet.

    Like

    • November 25, 2017 at 7:06 pm

      Thank you for your comment…all someone has to say, if they don’t know what to say, is “I support you”. Occasionally people do post ignorant and/or insensitive comments that, if they’d just taken the time to think about how it could be interpreted (especially by someone experiencing great pain, like multiple failed infertility treatments, like I’ve written about for years), could have been avoided. I understand that sometimes there are no words but looking at the numbers, when 99% of those who comment are the same 7 or 8 folks out of 1,000+ followers, you’ve got to wonder if most folks are even reading, ya know?

      Like

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