Thrilled to be a part of this video for RESOLVE’s Advocacy Day 2015. It’s such important work, and I hope you’ll consider attending.
So, right. I had a hysterectomy. My uterus, fallopian tubes, cervix and my right ovary were removed during surgery. And while I will always identify as infertile, and always always align with the infertility community, I feel that I am not infertile anymore. I am sterile.
(Sounds really fucking harsh, right? Well. It is.)
Right before they wheel you into the OR for surgery, a nurse brings over some papers to sign. A final round of consent forms. I have found consent forms to be overwhelmingly traumatic throughout my years as a patient, but this one takes the cake. This is a New York State form that states that I need to acknowledge that by having a hysterectomy I will never be able to conceive, gestate, or birth a child. In simple, legal, unavoidable language. Please sign here.
There is no infertility treatment for that shit. Game over.
The finality of it is much starker than I thought it would be, much harder to feel through or accept. Obviously before I decided to have the surgery I knew that I had no plans, no desire, and frankly no real ability to try to have a biological child. Between the endo and the adeno, it’s just not going to happen without a heroic effort and thousands of dollars and multiple procedures. I have a beautiful daughter, and we feel our family is complete. Yet, I have found myself soothing myself with thoughts that “we could get a couple eggs out of my one good ovary and then use a surrogate. If we really wanted to.” Of course, that seems fucking insane and I can’t even describe the ways in which I don’t want to do that.
But, I think it points to the loss of hope. The loss of “maybe.” The loss of options. The loss of being the one with the surprise pregnancy that does miraculously happen to some infertiles. The loss of that little tiny dream that flickers in the heart of every infertile who has a pee stick hidden in the back of bathroom cabinet, just in case.
This is different.
This morning there was a slightly different crowd in my yoga class. Mostly young moms. (Are we still young? I’m calling us young.) Mostly people I know, or I’ve at least seen in class before. And, one new woman, who looked even younger than the young moms. And, a little perkier. You might even say she was… glowing. I eyed her suspiciously.
We got to the point of the class, at the beginning, when the teacher asks if anyone has an injury that needs to be accommodated. It’s a very relaxed atmosphere in this class, and things can get chatty quickly. Well, the glowing woman shared with us that she’s newly pregnant. Very newly. Like, we’re the only people besides her husband and her mom who know.
I immediately and instinctively went into child’s pose.
(Yes, all of these pictures are of me. *Snort.*)
Other people? Well, other people cheered. And, clapped. And, congratulated. And, asked her how far along she is. And, how is she feeling. And, this is what you need to watch out for in yoga as your body grows and changes. And, then throughout the class, it would come up as the instructor - quite rightly - would show her a modification or tell her something that would help her practice later on in the pregnancy.
Despite being in a wonderful mood that morning, I was thrown - thrown - into a grief cycle, that lasted the ninety minutes of the class. (Quite efficient, actually. Years of practice are paying off, no?) There’s really nothing like a pregnancy announcement to challenge your attempts to zen out.
Denial (and isolation): If I just stay here in child’s pose, I will be safe and everything will be fine. Is everyone else clapping? OMG. Everyone is clapping. OMG.
Anger: I’m going to throw this fucking block at her. She looks a little wobbly in that ardha chandrasana… Sob. (I have to go to the bathroom now. To cry.)
Bargaining: Well, if she can get pregnant and I can’t, I can do this back bend way better than she can. I CAN DO THIS FUCKING BACK BEND. Oh, she can do this back bend, too? Ouch. I think I hurt myself.
Depression: I can’t believe she can do this back bend, too. And, she’s pregnant. And, I don’t have a uterus. I have nothing. I am broken. Waaaahhhhhh….. sob. (This time crying on my mat through vinyasas.)
Acceptance: Our fingers touched during savasana. I didn’t swat her.
In the end, my frustration was with the grief cycle, and not the glowing young woman beside me. I was wishing I could be free of this grief, of the triggers, and having to face these feelings again and again. (How very yogi of me, right?) Wouldn’t it be nice if we could leave this pain behind us? Let these triggers pass us by? It’s been so hard to face it all again, and since the hysterectomy it’s been much, much harder.
It’s safe to say that I was the only one in the room who’d had a hysterectomy. It’s a very weird thing to be a non-menstruating, uterus-free, thirty-four year old. I don’t really know where I fit in a room full of women right now. I’m not in menopause. I’m not menopause-age. And, I’m certainly not going to be making or birthing any babies. Obviously. So, where does that leave me? Is there a box to check for whatever this is? What would that box even say?
I joked earlier that at least I’m more efficient at working through these triggers, after years of practice. But, I think there’s something very real to that. I know these feelings well. I am engaged with my process and my grief. I know that I will be triggered again. And, again. I don’t know if I will ever be able to avoid this grief cycle, honestly. But, I am thankful that I was in a safe space and understood what was happening to me, today.
It’s been a long time since I’ve blogged about my health and my surgery and everything that’s going on. There’s this one thing that I’m having a hard time with, so I’m just going to say it, real quick.
I had a hysterectomy.
Ok, I said it. Is this post done yet? Yes? Ok, good.
(More later. Promise. Muah.)
I find it profound, significant, moving, startling, comforting, beautiful and heart breaking that on Rosh Hashanah, the Jewish New Year, Jews all over the world read Samuel, Chapter 1 from haftarah (aka the Tanach, aka the Bible). This is the story of Hannah, a barren woman, who cries to G-d for a child.
 There was a certain man of Ramatha'im-zo'phim of the hill country of E'phraim, whose name was Elka'nah the son of Jero'ham, son of Eli'hu, son of Tohu, son of Zuph, an E'phraimite.
 He had two wives; the name of the one was Hannah, and the name of the other Penin'nah. And Penin'nah had children, but Hannah had no children.
 Now this man used to go up year by year from his city to worship and to sacrifice to the LORD of hosts at Shiloh, where the two sons of Eli, Hophni and Phin'ehas, were priests of the LORD.
 On the day when Elka'nah sacrificed, he would give portions to Penin'nah his wife and to all her sons and daughters;
 and, although he loved Hannah, he would give Hannah only one portion, because the LORD had closed her womb.
 And her rival used to provoke her sorely, to irritate her, because the LORD had closed her womb.
 So it went on year by year; as often as she went up to the house of the LORD, she used to provoke her. Therefore Hannah wept and would not eat.
 And Elka'nah, her husband, said to her, “Hannah, why do you weep? And why do you not eat? And why is your heart sad? Am I not more to you than ten sons?"
 After they had eaten and drunk in Shiloh, Hannah rose. Now Eli the priest was sitting on the seat beside the doorpost of the temple of the LORD.
 She was deeply distressed and prayed to the LORD, and wept bitterly.
 And she vowed a vow and said, "O LORD of hosts, if thou wilt indeed look on the affliction of thy maidservant, and remember me, and not forget thy maidservant, but wilt give to thy maidservant a son, then I will give him to the LORD all the days of his life, and no razor shall touch his head."
 As she continued praying before the LORD, Eli observed her mouth.
 Hannah was speaking in her heart; only her lips moved, and her voice was not heard; therefore Eli took her to be a drunken woman.
 And Eli said to her, "How long will you be drunken? Put away your wine from you."
 But Hannah answered, "No, my lord, I am a woman sorely troubled; I have drunk neither wine nor strong drink, but I have been pouring out my soul before the LORD.
 Do not regard your maidservant as a base woman, for all along I have been speaking out of my great anxiety and vexation."
 Then Eli answered, "Go in peace, and the God of Israel grant your petition which you have made to him."
 And she said, "Let your maidservant find favor in your eyes.” Then the woman went her way and ate, and her countenance was no longer sad.
 They rose early in the morning and worshiped before the LORD; then they went back to their house at Ramah. And Elka'nah knew Hannah his wife, and the LORD remembered her;
 and in due time Hannah conceived and bore a son, and she called his name Samuel, for she said, “I have asked him of the LORD."
 And the man Elka'nah and all his house went up to offer to the LORD the yearly sacrifice, and to pay his vow.
 But Hannah did not go up, for she said to her husband, "As soon as the child is weaned, I will bring him, that he may appear in the presence of the LORD, and abide there for ever."
 Elka'nah her husband said to her, "Do what seems best to you, wait until you have weaned him; only, may the LORD establish his word.” So the woman remained and nursed her son, until she weaned him.
 And when she had weaned him, she took him up with her, along with a three-year-old bull, an ephah of flour, and a skin of wine; and she brought him to the house of the LORD at Shiloh; and the child was young.
 Then they slew the bull, and they brought the child to Eli.
 And she said, “Oh, my lord! As you live, my lord, I am the woman who was standing here in your presence, praying to the LORD.
 For this child I prayed; and the LORD has granted me my petition which I made to him.
 Therefore I have lent him to the LORD; as long as he lives, he is lent to the LORD.”
And they worshiped the LORD there.
Happy New Year, friends. I wish for you all, only the sweetest things in life.
I’m not going to wear clothes that hurt my body, anymore.
Some of you might be thinking “Why on earth would you wear clothes that hurt in the first place?” It’s a great question. Because, fashion and stuff. That’s why. I don’t want to get into it. I think we all know what’s going on here.
Pencil skirts. Skinny (no stretch) jeans. Shoes. Bras. Underwear. If you’re a person who wears typical “lady clothes,” chances are you know that clothes are generally not made with real bodies that move and breath in mind. Throw a chronic pain condition on top of (let’s be honest) cheaply-made trendy clothes, and getting through the day without feeling pinched, pulled, and smooshed is basically impossible.
I’ve just survived fairly major abdominal surgery, and I’ve this whole new body now. In some ways, it still feels a bit battered and worn, and in some ways it feels fresh and new. My new body definitely requires a new set of clothes. New undies, shoes, pants, leggings, sweaters, tops, shoes. An entire wardrobe that doesn’t hurt me. Yes, maybe I’m wearing sweatpants in public sometimes. But, I’m also gratefully embracing the slouchy, comfy trends with soft fabrics, warm sweaters, and comfortable waist bands. I’m taking my “radical” (in quotes, because it’s ridiculous that I just now, at the age of 34, have come to this) new approach to dressing to heart. And body.
This week I saw an endometriosis excision surgeon for the first time. This appointment was a long time in the making for a lot of complicated, emotional reasons. I have been having increasingly debilitating and frustrating symptoms over the past two years (since IVF), including pain, fatigue and inflammation. I am finally in a place where I can kind-of, sort-of face the next step. Surgery.
It’s been really easy to ignore surgery. To ignore the problem. To ignore endo. After the shit show of infertility and IVF, I really couldn’t handle facing another medical drama. I’m still healing from that experience and I still feel triggers that are very intense. I really believe I have medical PTSD from everything that happened. Ignoring it has been my coping mechanism of choice, and it’s been pretty damn effective. Except for the daily pain, but, you know,
Thankfully, I’ve made some baby steps towards accepting that I have this disease and that I can seek help to address it. I’m back in therapy, and we’ve been working on making this a priority. I sought out an endo support group (IRL), and went to a meeting. I’ve connected with other #endosisters online. As always hearing other peoples stories has taught me so much and helped me take these steps.
I’ve learned that I’m one of many women who has endo, but is terrified that it’s not really real. That it’s all in her head, like the doctors have told us for so many years. My first symptoms presented themselves with my first menses, at age 11. Today I’m 33 and I am just now seeing a specialist for my disease. I am just now having it medically confirmed that I have endometriosis. In the meantime I have seen dozens of doctors for dozens of endo symptoms, and not one of them has really helped me. Many have dismissed me, misdiagnosed me, or made me feel crazy. I mean, that’s fucked up. But that’s for another post.
Before making this appointment I talked to my husband and my therapist and my tweeps about my fear that the doctor would laugh at me and tell me there’s nothing wrong and that I don’t need surgery. I learned that I’m not the only one to have had that fear. Thankfully, though, she didn’t. Not even close. She listened to my story. Walked through my medical history. Asked questions and passed tissues across the desk. Then, after a four minute physical exam, she said “You definitely have endo. I can feel it.”
Life. Effing. Changing.
Since that moment I’ve felt waves of numbness, anger, and relief. I’m am so overwhelmed by everything that the doctor told me, all of the surgery prep, and just the fact that there will be surgery. (I’m a “surg-in.” A surgery virgin.) One of my stress responses has been just shutting down. I stared out the window a lot yesterday, and hid in my bedroom.
I am angry in a way I can’t really describe over having this diagnosis so late in life. After this disease has cause so much destruction in my life. It’s perfectly devastating to think about. This month is the five year anniversary of when we started to TTC. What if I’d been referred to an endo specialist then? What if I’d had the surgery then and had proper medical treatment for fertility, instead of the dx of “unexplained infertility”? What if my doctors didn’t say “everything looks pretty normal. You’re young. Your cycles are regular.” What if I hadn’t gone through all of that hell? What the fucking if.
And, finally, I am relieved to have a dx. To have a doctor. To have validation. And to have a plan. Even if the plan kinda makes me want to puke right now.
This is going to be a long road. There is no cure for endometriosis. But I feel a tiny sliver of hope among all the panic. I’ll take it.
It was pretty simple, really: In times of high pressure or stress, my style was to allow myself to shut down any talk of the offending situation; to just put it out of my mind and think about other things. I’ve gotten quite good at it, in fact. This might be well and good (some will likely disagree that it is ever good, but let’s leave that aside) were I on my own, dealing with something that I could ignore and my life would remain more or less fine. But, of course, I am married: I have committed myself to my wife and so our problems are OUR problems, and if I choose to shut down, I’m essentially leaving her out in the cold while I bask in my compartmentalized comfort. Of course, I did shut down, I did ignore, I did put aside for later. And that lead to a none-too-pleasant cycle of resentment and even more avoidance and so on: Don’t Wash, Don’t Rinse, Repeat.
At a certain point, Jen — who, mind you, is a huge booster for therapy — thought that enough was enough and that if we were going to start addressing the big issues I mentioned above — the ones that were staring us in the face as we worked on treatments — we were going to have to get our asses on a couch in front of a professional listener.
COUPLES THERAPY IS NOT ALL ABOUT YOU: LISTEN. You and your partner should be there for the good of the couple, and both of you deserve to be heard in full by the other, but also have the responsibility to listen to the other. Listen as well as you speak, reserving judgment while the other person is speaking. (You’ll hear them differently.)
I’ve never written for PAIL before, and I’m not even actively blogging right now. But, this month’s topic - birth stories - had me up at 5am this morning, thinking thinking thinking. I read a few of the birth story posts from adoptive moms, and all I can think right now is “I feel differently.” I also think this is a timely topic, given that November is also National Adoption Month. So, here we go. I’m blogging.
We have a birth story. Did I give birth with my body? Clearly, no. And that is something that every adoptive mom feels differently about, and something that will definitely color the way we see our birth stories. I remain relieved that my body was removed from our family building. It’s a complicated relationship that I have with my body, one that will continue to evolve throughout my life, and one that will likely never include birth. I grieved that loss - which I mostly focused on sharing the birth with my husband, rather than what it meant for me as a woman. Of course, it stings at times. Sure, sometimes I feel left out. Sometimes I feel different. But, when I think about our birth story and it doesn’t feel “less” to me.
We have a birth story. Is it just like the ones I hear at play group every week? Again, no. But, when I tell our birth story, the room is silent, mouths hang open slightly, and careful but earnest questions are asked. Mothers are amazed. Because, it is an amazing story. So far I haven’t had a single “you’re not a real woman because you never gave birth” reaction. People have been genuinely open, kind, curious, and caring in accepting our story. (Thank Moses, because I’m pretty sure I would destroy anyone who wasn’t.)
We have a birth story. And one of the things I love about it is that my husband and I experienced it all together - in the (almost) exact same way. WE got the call. WE threw our clothes into suitcases and got a rental car. WE took a long drive to the hospital. WE made a pit stop to pick up our birth mother gift. WE waited together in the waiting room for nurses to take us to our baby. I’ve found that not giving birth, not recovering physically, and not breast feeding have freed us in ways we never expected to co-parent on equal footing. It’s been an awesome revelation, and I am grateful for it.
We have a birth story. Here it is, in brief. We were matched four days before our daughter was born. We had only a car seat, a Pack and Play, and a bag of hand-me-down clothes. We were fucking terrified. We were not there for the birth - that was not in the birth plan. We met our daughter an hour and a half after she was born, and have been with her ever since. Her birth mother requested that we have a room at the hospital and that the baby room with us. It was an incredible gift and I will forever be grateful for that time. Have I mourned the loss of those first 90 minutes with her? Yes. Do I wish I was there for the birth? I still don’t know. My dominant feeling here is that the birth was not my time; that was for her birth mother. That was her time, her experience. I accept and appreciate and respect that she kept it for herself. I know that my husband wanted to be present at the birth. I wonder if he still mourns that loss?
We have a birth story. And, I don’t mean to make it sound like it was all easy and fun and perfect. It wasn’t. I’ve never been more terrified in my life. We parented for four days before the termination papers were signed. I was floored by the love I felt for my daughter’s birth family. I still cannot describe the range and depth of emotions I experienced those first moments, days, months. And, I think this makes me more of a mom than I realized at the time. I wouldn’t change anything.
We all have a birth story. Being “different” is never easy. But, I know I am far from alone as a mom-who-didn’t-give-birth. Thanks to Twitter and the blog community, I know many other women who didn’t birth their children. I know their stories and honored them and lived them and remember them. I also have wonderful friends in the LGBT community who are mothers who didn’t birth their children. We are different, but we are not alone.
Has the manner of her birth affected how I parent? (I’m interpreting this as a question about being an adoptive mom who did not give birth, versus a biological mom who gave birth.) Yes and no. Fundamentally, I’m still me, and so much about my parenting is instinctual. I can’t imagine doing things differently. At the same time, everything is different than the dream world I had imagined for myself. Without experiencing infertility and adoption, I cannot imagine that I would be a stay-at-home-mom right now. That was never in “the plan.” It’s been a gift and a challenge, as it’s not something that feels natural to me, but is something I appreciate beyond words. Did I practice attachment parenting (something many adoptive parents explore)? Not after I read that Dr. Sears thought I should tape a tube to my breast through which to feed my adopted daughter who will never experience the glory of real breast-feeding (I threw the book across the room upon reading this and never opened it again.) We don’t co-sleep, we do baby-wear, we didn’t let people feed her the first few months (it freaked her out), we did let people hold her. These decisions were personal and instinctual to us, and how we understood our daughter’s needs. I’ve never tied them directly to the fact that we adopted, though it would be impossible to deny that it’s affected who we are and how we do things.
Finally, I’m sad to see that there are no birth-mother birth stories listed here. I know that’s not the point of PAIL, as it’s a parenting group, but even in the posts I did read, and thinking of my own daughter’s birth, I have no idea how the birth mothers feel about their birth. Did it go the way they envisioned? Did their birth plan help them through? What would they do differently next time (if they were planning to parent, or not)? I still don’t know how my daughter’s birth mother feels about the birth; I haven’t heard her birth story. I hope some day I will.
Now you can follow my Infertility and Reproductive Rights page on Facebook, too! Doooo it!
“The fact is that, on average, New York women earn less money than men, are less likely to become a CEO, are twice as likely to be sexually harassed, and don’t have complete say over our reproductive health. The Women’s Equality Agenda will have a positive impact on New York’s four million women. Gov. Cuomo has just introduced the Women’s Equality Act!
It is urgent that you call or email your legislators now, even if you contacted them last week. Tell them to pass the Women’s Equality Act this session!
Send an email: http://www.ppaction.org/site/R?i=gjRdL5D5J8GuIFRTA_9CMA”
“Did you know that compensated gestational carrier arrangements in New York State are currently illegal? A bill in the New York Assembly and State Senate seeks to reverse this law and make compensated, gestational carrier arrangements legal in New York. This means New York residents who choose to use a gestational carrier (surrogate) to become parents and build their family can stay in New York to do it! RESOLVE: The National Infertility Association supports this legislation.
We need your help to get this bill passed. Your Assemblyperson and State Senator need to hear from you that this bill is important.”
Today, I was thrilled to join actress Elisabeth Rohm in a discussion about the challenges of infertility and IVF, and the devastating shock of learning that one won’t be able to conceive "the normal way.“ I love her message that women who know they want to parent should have conversations about fertility and family building with their ob/gyns on an annual basis. It’s not just about birth control, ladies! And, it’s never too early to bring fertility and conception up with your doctor. There are blood tests that can be done in any ob/gyn’s office that will help you learn about your body and your fertility.
I’m also pumped about her call to action through honesty. We all need to share our stories about struggling with infertility. It’s the only way to eliminate the shame, and break down stigmas surrounding our disease. Through sharing, we are educating and supporting other women in understanding the truth about having children.
I’ll be joining Elisabeth Rohm in a discussion about the struggles of undergoing IVF treatment to build a family. I’m thrilled to be join this conversation about how opening up about infertility can be empowering to oneself and other women.
Actress Elisabeth Rohm opens up about infertility in her new book, ‘Baby Steps: Having the Child I Always Wanted (Just Not as I Expected)’. We hear her emotional success story along with other moms who have struggled with getting pregnant.
So as you do this work today, how does it affect YOUR identity, your sense of balance? By stepping off the sidelines, you are taking a huge step towards finding your balance. You have converted yourselves from frustrated victims to activists, directing your biography. I hope many of you succeed in your quest to become parents. But as I’ve learned from speaking with so many people who have gone through treatment, regardless of whether they become parents or not, this experience, this disease, remains a part, but hopefully not all, of their identity. Bitterness? Anger? I’d be lying to tell you that it won’t exist. Your self esteem, however, will come from what you do with it.
“More than 100,000 foster children woke up this morning ready to join loving families. Far too many will go to sleep tonight still waiting. And yet, in 31 states, deserving LGBT families are blocked from providing these children with a caring home.
That is why Kirsten has sponsored the Every Child Deserves a Family Act of 2013 to ban discrimination against adoptive parents based on gender identity, marital status or sexual orientation. The bill would also prevent states from blocking the adoption of LGBT children.
By eliminating barriers for loving LGBT families, we can greatly reduce the number of children without a home of their own. Every child deserves the opportunity to join a caring family.”
Um, I love the internet. This website is so cool! It tells you about any legislation that’s been introduced and you can sign up for alerts on any legislation that you want to follow.
Obvs, I’m following HR958 (see link), which we’ll be lobbying for on Wednesday. And, once The Family Act is introduced (today or tomorrow!) I’ll be following that as well.
Over the weekend I was listening to The Moth on NPR while cooking up some delicious tacos, and found myself in tears over Darryl McDaniels’ (from RUN-DMC) story about learning he was adopted and discovering his “missing piece.” Worth a listen. (It’s segment 3 of the podcast.)