Review: Rokitansky by Alice Darwin

This book. All the feels. The only non-textbook I've highlighted and marked up. The first book in a long time that took me a journal entry and a day and a half to mentally and emotionally process before I could talk about it. I have the same condition as the main characters (Rokitansky, also known as MRKH), and reading this book made me grateful for all the support I've had regarding my syndrome and yet angry that any woman has to suffer the emotional and physical trauma of infertility and resulting shitty relationships.

Rokitanksy by Alice Darwin captures the ups and downs of MRKH so well, I definitely recommend this to anyone and everyone who'll read it. My only advice is to make sure you have tissues nearby, especially for the twist at the end! I had this for 4 years and I was finally able to get through it, even though I had to take a break every 20 pages or so to breathe and remind myself that I'm okay! I wonder if it took me 4 years to get around to reading this because I needed to be in an emotionally strong enough place in my life to be able to handle the roller coaster of emotions.

Darwin does an amazing job of portraying the emotions of an MRKH diagnosis at every stage of life, even when it seems like the older woman isn't affected anymore. She's at a stage in her life where it doesn't bother her much anymore - the diagnosis is hardly even mentioned until the end.

Moira is trying to navigate college life and figuring out who she is as a person, while fighting an internal battle of constant reminders of what she doesn't have since she's living with female roommates. She throws herself into a shopping addiction instead of dealing with the problem head on because she feels so ashamed of who she is and can't bring herself to share her experience with others. She has internalized her mothers feelings towards the condition, and believes that she can't make the decision for herself of who she can and cannot tell.

Tori yearns to be a mother at any cost. She wishes the cost of her dreams was only financial, and not also the price of her marriage. She wishes she and her husband Harry could go back to what life was like before they hired a surrogate. Harry wants their journey to parenthood to end because he sees how it is destroying her - the beautiful woman he once fell in love with has been taken over by a stranger, a brokenhearted woman he does not recognize and does not know how to help. Yet, somehow they figure out to communicate again and come to a decision with which they could both be happy about. 

Mrs. Brown is tired. So very tired of everything, of life. She misses seeing Mr. Brown more often, and hopes that something will give and they'll be able to spend more time together. Rokitansky is not mentioned in her story line until the every end of the book, which makes me wonder if she's come to terms with the condition and is "okay with it."

It is the last chapter when we understand why Rokitansky was at the forefront of Moira and Tori's stories, but not with Mrs. Brown. It is a twist that I saw coming roughly 3/4 of the way through, but wasn't entirely sure how it would play out.

Darwin shows us the heartbreak, anger, confusion, strength, love, perseverance, and courage that are synonymous with Rokitanksy, and any infertility diagnosis. Out of pain, comes beauty. Out of the ashes, a phoenix rises.

Five More Books About Infertility

On April 29, 2017, I wrote about a selection of books about living with infertility and published it during National Infertility Awareness Week. I had wanted to include more books and chose not to at the time because I was feeling emotionally burned out from the topic. It's an emotionally draining subject in of itself, and even more so because I was so strongly surrounded by it for a week, even though it was because of my own doing. Now that quite a bit of time has passed and I've been able to process my emotions and come back to this topic feeling refreshed, I'd like to share another list of books covering infertility.

The Feeder

Collection of Poetry by Jennifer Jackson Berry
Paperback, 96 pages
Published Nov. 2016 by YesYes Books

Recommended to me by a friend with primary infertility who also writes book reviews. The Feeder is a book of poetry that one Goodreads reviewer describes as "refreshing," and another as "brave."

Timons Esais left this in his review on Goodreads: "There is also some joy in here, but the collection as a whole brings one word to mind: brave. All poets risk self-esteem when publishing, all poets risk exposure, and it is very common for confessional poets (in these days of confessional poetry) to armor themselves against the risk by being defiant in their voice, being in-your-face, being I-can-say-this-and-you-can't-you-turd. Berry seems not to do that, at all. Here, too, she refuses to resolve. She asks, "How did I fall today?" and leaves us with that."


Everything Conceivable: How Assisted Reproduction is Changing Men, Women and the World

by Liza Mundy
Genres: Nonfiction, Science, Feminism
Available in hardcover, paperback, and Kindle
432 pages, published 2007-2008 by Knopf

Liza Mundy is an award-winning journalist who wrote Michelle Obama's biography, Code Girls, and The Richer Sex.

In Everything Conceivable, per Goodreads she, "captures the human narratives, as well as the science, behind the controversial, multibillion-dollar fertility industry, and examines how this huge social experiment is transforming our most basic relationships and even our destiny as a species.

Skyrocketing infertility rates and dizzying technological advances are revolutionizing American families and changing the way we think about parenthood, childbirth, and life itself. Using in-depth reporting and riveting anecdotal material from doctors, families, surrogates, sperm and egg donors, infertile men and women, single and gay and lesbian parents, and children conceived through technology, Mundy explores the impact of assisted reproduction on individuals as well as the ethical issues raised and the potentially vast social consequences. The unforgettable personal stories in Everything Conceivable run the gamut from joyous to tragic; all of them raise questions we dare not ignore."

Embryo Culture: Making Babies in the 21st Century

Non-fiction book by Beth Kohl
Available in hardcover, 288 pages
Published 2007 by Farrar Straus Giroux

This book was also recommended to me by a friend who went through IVF and surrogacy. Since I have not read the book myself, I am sharing the description from Goodreads with you:

"Injections + Appointments + Egg Retrieval + Embryo Transfer = Resources (Energy x Time x Emotion)" That's the equation that was projected onto the screen when Beth Kohl and her husband first showed up at the in vitro fertilization (IVF) clinic. "Good evening," the program's psychologist told the gathered infertile couples. "Before you begin your treatment, you should know that this program is emotionally and psychologically stressful."

And how. In this marvelously unconventional account of her struggles to bear children, Kohl leads the reader on an oh-so-up-close tour of fertilization in America, and the ways in which science and miracle, technology and faith, converge to create life in the twentyfirst century. Along the way, Kohl wrestles with a new world of medical ethics: Should she "selectively reduce" the number of embryos successfully implanted in the womb in order to prevent a potentially complicated pregnancy? How much genetic testing of fertilized eggs is too much? What is she supposed to do with the seven embryos left over from the IVF process? When Andrew Solomon wrote "The Noonday Demon," he opened the world of depression to readers as no writer had done before. And when Stephen L. Carter wrote "Reflections of an Affirmative Action Baby," many readers were forced to completely rethink race and prejudice. Kohl's spirited and rich exploration of "embryo culture" will completely revise how we see modern motherhood.

In-Vitro Fertilization: The A.R.T. of Making Babies

Non-fiction
by Geoffrey Sher, Jean Stoess, Virginia Marraige Davis
Available in paperback, hardcover, and ebook formats
222 pages, published 1998 by Facts on File

Another book recommended by several friends who went through IVF or are considering the process so I am recommending it to you.

As Goodreads states, "In Vitro Fertilization is a comprehensive guide to this increasingly common and successful practice for the 3.3 million couples in the United States seeking alternative means of conception. It discusses everything you need to know about IVF, including how to find and choose the best in vitro programs, what to expect as you go through the process, and what your chances are of achieving a successful pregnancy. The book is designed to prepare couples for the complex and emotional process of IVF, and it has been specially updated to cover the latest developments in the field. No one considering IVF should overlook this indispensable reference."

Sing You Home

Fiction by Jodi Picoult
Available in paperback, hardcover, audio, and ebook formats
496 pages, published in 2011 by Atria/Emily Bestler Books

The only book of the list I've personally read, I highly recommend this one, especially for book club discussions. Written by one of my favorite authors (I literally have a whole shelf dedicated to her books!), Sing You Home follows the ups and downs of a marriage tormented by miscarriage after miscarriage.

Max plummets into alcoholism, yet somehow is able to heal again after his failed marriage with Zoe. A newfound unexpected romance brews for Zoe, with the opportunity for a baby. This scenario could include Max if he's willing, but he balks at the prospect, clouded by his religious beliefs and the financial costs.

Poem: Strength and Unity: MRKH Warrior Strong

Grief has its own unique way of isolating us into a cruel, dark world we don't always know how to come back from. It is in these moments we struggle the most, yet draw the most inspiration. A good friend of mine, Meredith Brookes, recently passed away after a brief illness on Sept. 22. The last conversation we had was on Sept. 20th, 2 days before she passed. We had finally narrowed down a date about 10 days later to finally get together - the first time since she moved closer to me this summer. That conversation made the news of her unexpected passing that much harder to process. And then, I heard on Oct. 2nd, the day after we had planned to do something that she was gone...making me feel guilty I hadn't reached out to her sooner and more often.

Yet, I know she was watching over me somehow, leading me to write this poem about our friendship, and her commitment to the MRKH community.

Strength and Unity: MRKH Warrior Strong

All through the years, I'd yearned for a connection like ours.
I hoped that one day I wouldn't be alone in this battle.
I waited, patiently, for you, my friend.
And yet, here we are...

You've come and gone.
We had a bond, so strong.
Stronger through the mutual struggles, forged into
MRKH Warrior Strong.

My heart, and your heart spoke so eloquently
Our souls knew the same language.
You will always be my soul sister.
My MRKH Warrior Sister.

I didn't have to explain myself to you.
You somehow knew, without a doubt,
just what to say to make me laugh.
You knew, yet without knowing, that your sarcasm
and morbid humor would make everything better in it's own way.
You knew, in the way that only a fellow MRKH Warrior could know.

And like the phoenix, our sisters and I will rise together
from this grief, we'll build a stronger foundation.
We will rise together to discover our newfound life without you.
We will forge ahead into the unknown,
amidst the ashes left behind.
We will rise in the face of adversity
in honor of your image, and with your strength.

We will rise together as one, in unity...
MRKH WARRIOR STRONG.

Infertility: You Are Enough

A little back story...

Earlier this month I went to a writers workshop in Middlebury, Vermont as part of the Burlington Writers Workshop that I am a member of. I had submitted a poem to be critiqued, about softball, and I plan to submit it to some literary journals for publication.

The feedback I got was amazing and I am ever grateful for the group of people in that group because they are raw and mindful of the importance of constructive feedback. Normally we have two people who have their pieces "workshopped" and critiqued but this particular evening it was just me so we spent the first hour or so going over my piece. I was "in the box," which means I could not say anything while the other group rest of the group was discussing my piece. I came out of the box when they were done, loving the feedback and have a lot to work with to tweak the poem.

Next, we worked on a prompt - we were to write about something you wish somebody had told you. The member who gave the prompt has been leading writing workshops or writing groups for probably 20-25 years if not more. He said that my poem had inspired him to bring this prompt to this group that night because the theme of the poem was something that was obviously to him something that I had wish I had been told when I was playing softball when I was a kid, but were things that I have learned over the years on my own.

The prompt inspired me to write about what I wish I had known about my infertility diagnosis.

I wish I knew it was a possibility. I wish during sex-ed that infertility was mentioned as something that happens. I wish that sex-ed, specifically around puberty and periods, was not taught in such a way that it is assumed that people would all develop the same way, and that all women would start their period by a certain age or have the same flow as each other every 28 days. As we all know by adulthood, that is just not the case and I wish that was pointed out during sex-ed or told to me by my parents or somebody. As it turns out, I learned all of this the hard way when I hadn't started my period before I was 15. I went through all kinds of tests to figure out why and I ended up being diagnosed with MRKH, a form of primary infertility.

And so I am here to tell you what I wish I knew when I was younger. I want to tell you that you are enough. You are everything that you are supposed to be in this life. Despite your so-called flaws, despite your inability to do what the female body is supposedly supposed to do, you are enough. You are one hundred percent who you are supposed to be. This struggle, this infertility struggle that you are going through is making you stronger, it is making you more compassionate, and it is a test you will pass.

You are not alone. Your infertility journey, by society's standards, makes you feel like you're alone, like you're living in isolation and nobody else knows what you're experiencing. I am here to tell you that while not everybody's experiences are the same, there are people who empathize and understand what you're going through without you having to explain it to them. You are more than your infertility journey because it is only one piece of the pie, it is only one fraction of your life and who you are as a person.

You are everything you are meant to be in this life.
You are loved.
You are not alone.
You are enough.

This video, titled Not Alone, sums it all up. It's produced by American Greetings as part of their "Give Meaning" to relationships campaign. It's what convinced me to share my answer to the writing prompt with you.

Seven Books About Living with Infertility and Beyond

As a bibliophile, book reviewer, and now a self-outed MRKH Warrior, I am compelled to share with you a few books about infertility. I have not read all of these books, only started the first two about MRKH, both of which I have read multiple reviews and synopses. Those I have not read are about infertility in general and are accompanied by other reviewers accounts and/or descriptions.

Look for these today at your local bookstore because April 29 is Independent Bookstore Day. What if they don't have it, you ask. Answer: ask the owner to order you a copy and carry the book to help spread awareness about infertility. But what if they refuse, you say. Answer: Ask again. No? Not comfortable asking? Okay fine, these are also available on Amazon unless otherwise noted.

I or My Partner Just Received An Infertility Diagnosis. Now What?

Take a deep breath. Repeat after me: I Am Not Alone.

Say it again. I Am Not Alone.

But I feel so alone. So ashamed, so isolated, and so heartbroken. My/my partner's identity as a man or a woman is in crisis. I feel like nobody understands. Nobody is listening.

I know. We've all been there and still feel this way sometimes. Did you say we? Yes.

We're all over the place. Some of us are no longer in hiding, and we want to support those who still are, while still protecting your privacy.

Some of these resources are MRKH and women specific because that what I know. If you don't find what you're looking for here, you can use these ideas to seek them out.

How Infertility Has Taught Me to Listen

Infertility is a blessing in disguise because it has taught me to listen. I know, it sounds crazy that infertility can be a blessing in disguise when it's an emotional struggle. It sounds even more crazy since the emotional affects are not visible to others, even to those in our inner circle, making it that much more of a struggle. Because it's not visible, it doesn't look like we have anything to be upset about and we occasionally get told that to our faces. This attitude towards our "invisible" struggle has taught me that it's not a good idea to judge a book by its cover so to speak, even though that is human nature. It's taught me that not everything is as it appears, and so I do my best to listen.

Things Your Infertile Friend Wishes You Knew

So your friend just told you she has some form of infertility. This is a moment in your friendship where it's time to listen to her and support her. She may or may not have told you specifics of her situation. It doesn't matter. What matters is that she told you because she trusts you. She may have also been so overwhelmed about telling you, for fear of your reaction, that she didn't think to tell you some of the things she wishes you knew all along, and hopes you will remember. Perhaps you were overwhelmed by the news to ask what you could do to be there for her as a friend.

This is where the list below may come in handy. While it's not comprehensive, it's a list of some things I wish my friends and family knew, and what my MRKH Sisters wish their networks knew. MRKH is a form of primary infertility I talked about in an earlier post that affects only women and mainly affects the reproductive system. In sum, according to Genetics Home Reference, "this condition causes the vagina and uterus to be underdeveloped or absent. Affected women usually do not have menstrual periods due to the absent uterus," though I'd like to point out that many still ovulate due to the presence of ovaries (we get the PMS without the period, yay! *sarcasm*)

Listen to Understand (Infertility), Not to Reply

For several months I've been planning this idea in my head that I would write this well researched blog post about infertility to kick off my participation in RESOLVE's National Infertility Awareness Week. Infertility is an emotionally raw diagnosis. I realized that the research wasn't getting done because I just wasn't ready to dive deep into a topic that is so sensitive already without the added stress of research. I subconsciously realized that dealing with infertility and combing through tons of information and writing a well-researched blog post was too much for me to handle.

What I can handle is telling you my own infertility story and reasons behind participating in this year's National Infertility Awareness Week. And writing from the heart is less likely to make me cry. I hope. So grab your favorite beverage, maybe some tissues, snuggle up on the couch, and listen up because what I've written here to share with you is emotionally raw and important.

Surrogacy in Kansas

A few weeks ago an interesting piece of news came out of Kansas. The Republican Senator, Mary Pilcher-Cook, has proposed Senate Bill 302 which would make it illegal to use or be a surrogate mother, also known as a gestational carrier. A Washington Post article reads, "If passed, it would make all agreements, whether oral or in writing, with surrogate mothers null and void. Anyone involved in hiring, or working as, a surrogate could be charged with a misdemeanor, punishable with up to a $10,000 fine and a year in the county jail."

To read the full article, please visit the Washington Post website. Another article on a different website mentions how the Senator did live sonograms in front of legislators - read that article here.

Below is a letter written to the Senator in response to this proposed bill. I'm sharing this letter by Kristy Zieman with her permision:

To Whom it May Concern,

I would like to share my concerns regarding the proposed bill SB 302 which would ban surrogate pregnancy in the state of Kansas. My name is Kristy Zieman and I was born with Mayer-Rokitansky-Kuster-Hauser (MRKH) Syndrome. This syndrome, in its simplest description means that I was born without a uterus; I was however born with my ovaries which are fully functioning and ovulating eggs. I was diagnosed when I was 14 years old and I am now 34 years old. This syndrome is extremely hard to accept and cope with as it completely affects one’s psyche on what it means to be a “normal” woman.

Most people, especially women, blindly believe that it is a woman’s natural born right to have children. In living with MRKH, you have to live with the fact that you will never be able to become pregnant and carry your own child. This is beyond heartbreaking in a way that I cannot explain to you, and am sure only those who cannot have children will ever fully understand. MRKH shattered my self-worth as a woman, at least until I fully understood what my options actually were. My ability to cope with my syndrome was in part due to the fact that my specialist explained to me that I should not give up my dream of having a biological child because it was still an option for me through the use of surrogacy.

Since I was born with my ovaries that do ovulate eggs, it would be possible for me to have my eggs retrieved. Through in vitro fertilization, an embryo made of my eggs and my husband’s sperm could be implanted into a Surrogate. Words will never express what this type of hope gave to my life as a young woman trying to cope with the world of infertility that was thrown at me. Nature may have taken away from me my ability to carry a child, but science gives me the opportunity to have another woman carry that child for me; I can still have a biological child if I choose to.

Please think on the following when reviewing bill SB 302… What right does anyone have to take my ability to have a biological child away? I was dealt a hard hand but found acceptance of it because of the possibilities science gives me. Now I’m being told that against all of the odds I have overcome to live with MRKH, it may be illegal for me to have a biological child if I want to. This notion is unacceptable and appalling. I have devoted my adult life to the study of science and medicine. I am an upstanding and law abiding citizen of the state of Kansas; I pay my taxes, I hold a full-time job, and so does my husband. I am in no way a drain on society, but a contributor to society. I am a Professor at Butler Community College of Human Anatomy & Physiology and Microbiology for Nursing/Pre-Med students. I devote myself to teaching future healthcare givers of this state, which I would say is an asset to our state. I am the type of person that is going to be unjustly hurt and affected if bill SB 302 passes.

Now tell me in what world is that fair and acceptable? MRKH affects around 1 in 4500 women; what if your daughter or granddaughter was born with MRKH? Would you still be okay with a law that you voted for, telling them that although the ability is possible, they still can’t have a biological child because they would be fined and/or imprisoned for using a surrogate? Would you like productive members of society like myself moving out of the state of Kansas because of such a law? It is horrible that I have to actually write this letter in the first place. When this bill was proposed last week it made me feel worthless as a woman again for the first time in almost 20 years.

My name is Kristy Zieman, I am an MRKH Warrior, a voice for the voiceless, and I am the type of person that this bill will hurt. I do not deserve, nor does anyone, such a personal reproductive choice to be made for me by someone who has never met me, who has never lived a day in my shoes, and whom probably has their own biological children without having to struggle for it. I appreciate your time in reading my testimony, and hope that the rights of all women in Kansas that cannot carry their own children are heavily and fairly considered when voting.

Sincerely,

Kristy Zieman

Blog Author's Note: To learn more about MRKH, please visit www.mrkh.org and www.beautifulyoumrkh.org.

MRKH venting

Warning: Graphic Language

Some days are easier than others and today is one of those days where it's not. I just want to scream at the top of my lungs and tell everyone to just fuck off.

It's nothing personal, I'm just having a day where it's difficult to "deal with" the roller coaster I've been through.

Why? Because when I was 15 I was diagnosed with MRKH or Mayer Rokitansky Kuster Hauser syndrome. I was born without a uterus, or a cervix. So basically, I still ovulate but don't get an actual period. I still have my ovaries and fallopian tubes (all of which are normal, fortunately, some women with MRKH don't have that luxury) so I still ovulate monthly but don't actually bleed out.

Yes, yes, I know I'm lucky. But you're lucky for having the chance to get pregnant. You're lucky for having that opportunity. But if you really think about it - I'm not so lucky - I constantly get asked when my last period was and I have to say I don't get it, which warrants looks (from medical professionals mind you) that say "are you serious?" or "i didn't even know that was possible!" or the infamous one "you're so lucky!" Well, fuck you, for being so unprofessional and uneducated.

My gastroenterology PA actually heard about it when I was telling her my medical history. I was shocked, but then again she's in her late 20s or early 30s so she's young enough to have heard about it - or at least remember hearing about it in med school.

Then there's all the other complications that can go along with MRKH. I have a sub-condition called MURCS which stands for Mullerian Renal Cervicothoracic Somite abnormalities. In short, women can either have kidney abnormalities and/or bone/structural abnormalities associated with MRKH - all present at birth. Personally, I have congenital scoliosis and fortunately it has not caused any problems in of itself.

I also get a lot of symptoms of UTI's because of the way my anatomy is shaped - my gynecologist (God bless him, I don't know what I'm going to do when he retires or I have to move) told me that it'd normal for someone like me to have these symptoms because my anatomy is shaped differently. I don't know how it's different, just that it's different enough to cause some issues.

Then there are the (innocent) questions from women - "do you have an extra pad or tampon?" or the direct comments during conversations about pregnancy, giving birth, and child-rearing "just wait until you have kids, Laura, you'll get to experience all of this!"

How would you know that I'm planning on having kids?! Or that I even wanted to be listening to this type of conversation on my lunch break or on a night out? Most of the time, I tune it out or let it go but on days like today, I can't or won't. I listen to you bitch, moan and be the epitome of catty women, but when it comes to something like this, it's extremely difficult for me to just let it go.

I wanted kids. 4 to be exact. And now...I don't want kids at all because I'm so angry about it. Something I just cannot explain. You have to be an MRKHer to understand that.

I guess what I'm most angry at is that I didn't know that something like this was even possible. And with this whole health care reform going on - who knows if surrogacy will be covered at all. Or to be politically correct now it's "gestational carrier."

Please keep in mind that in the whole scheme of things all of this is just in the back of my mind. It doesn't bother me every second of every day. Like any human, I have my bad days and when I do, this thing surfaces even if it's not related. It's not personal, it just is what it is.