Fruitful Fertility Post

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Today is Pregnancy and Infant Loss Remembrance Day. A day to remember all the children who ‘might have been’ and honor the pain of the mothers and fathers who lost dreams.

I had the honor and opportunity to share my story with Fruitful Fertility in order to help raise awareness about recurrent pregnancy loss. Fruitful Fertility is a 1:1 mentoring service for women dealing with infertility. They match women with mentors who’ve had similar experiences. The post below was originally published on their blog.

If, after reading this, you’d like to show your support to women and families who have lost pregnancies, my organization (RPLA) has created four different “selfie signs” for people to post on social media. They can be found here: www.rplassociation.org/connect. Please tag @rplassociation in your post.

“Sometimes I forget that I have been pregnant.  I think about my fertility experience in terms of my losses, not my pregnancies.  But I have been pregnant for a combined total of 45 weeks – that’s more than full term.  I’ve had nausea and night-sweats and sore boobs and exhaustion.  I’ve seen two heartbeats.  I have been pregnant.  Six times.  But I’ve never made it through a first trimester. 

For a time, the process of trying to get and stay pregnant stole my identity.  It affected my job performance and impacted my personal relationships.  It invaded my body and my mind.  It was a single note played so loudly and consistently that it muted all the other chords of my life.

My memory too, is littered with otherwise wonderful events remembered through the lens of my losses.  The moments themselves weren’t bad; I was with friends, or family, or on vacation, or at fun events.  But it’s as if there’s a scratch on the lens blocking certain shapes and distorting certain angles.  They are all slightly marred. 

It has been 18 months since my last miscarriage, and while the pain is not fresh, there are plenty of days I still grieve.  Anniversaries of losses can be hard, so can intended due dates, so can places or activities associated with the losses.  Mothers’ Day can be particularly challenging.  Receiving birth announcements and baby shower invitations can trigger sadness.  These are normal feelings, yet I suffer most of them in solitude and silence.  That’s why I appreciate the many stories shared during October Infant and Pregnancy Loss Awareness Month; they remind me that I’m not alone.  

My experience, the repeated cycle of conceiving and losing pregnancies, is called “recurrent pregnancy loss.”  It is a condition that impacts 1-2% of couples (10-15% of the infertility community), and while there is much known about it, still roughly half the cases remain medically “unexplained.”

I am one of these women.  The unlucky amongst the unlucky.  I don’t know why I can’t carry a pregnancy to term.  I’m not sure I will ever know. 

It has taken me a long time to accept this truth.  For years, I was desperate for a reason.  I wanted a game plan – something I could do differently in future to ensure a different outcome, because lacking a medical explanation for my losses, I often blamed myself. 

After every pregnancy I meticulously retraced my actions, mentally flogging myself for misbehaviors: I should have ordered decaf; I shouldn’t have taken that hike; I should have switched to glass water bottles instead of plastic.  I felt responsible for the outcome of my pregnancies.  Childbearing was something my body was built to do, and my inability to procreate made me feel like something essential was amiss.  I felt broken and I felt culpable. 

Time, intense therapy, and the knowledge that I tried everything helped lessen my guilt.  On my journey to motherhood, I saw multiple reproductive specialists, had several surgeries, took hormones, steroids, blood thinners, vitamins, and supplements.  I prescreened embryos and did two rounds of IVF.  I tried acupuncture and experimental medications.  I scoured the internet for information about healthy pregnancies and modified my diet and lifestyle accordingly – intermittently cutting out dairy, gluten, coffee, and sugar.  I did yoga and tried meditation.  I prayed desperately.  But nothing worked.  At this point, even my doctor supports me pursuing alternative paths to parenthood.   

I have the utmost respect for every healthcare professional I’ve seen these past years.  They have been intelligent and compassionate and have employed every tool at their disposal to try and keep me pregnant, but medicine has no more answers for me.  The facts are that:

∙       30% of infertility cases are unexplained

∙       50% of recurrent pregnancy loss cases are unexplained

∙       60% of stillbirths are unexplained

This is why my husband and I decided to start Recurrent Pregnancy Loss Association (RPLA) – a nonprofit organization dedicated to funding research into the causes of and treatments for recurrent miscarriage.

This year, more than ever, we have witnessed how quickly the scientific and medical communities can become galvanized to find solutions to challenging health problems.  It’s not a question of capability, it’s an issue of funding and focus.  Through RPLA our hope is that by convening the patient and scientific communities we can help other couples accelerate their journey to parenthood.  My husband and I may not get the answers we hope for, but perhaps we can prevent others from walking this path behind us. 

So this October, if you’re ready, if you’re able, in addition to celebrating stories of strength and healing, in addition to remembering our losses and honoring our pain, let’s also come together with the purpose to find solutions and advocate for answers.”

I’m Sorry, But I Can’t Be There For You Right Now

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October is Pregnancy and Infant Loss Awareness Month.  This means there are a lot of pregnancy loss facts circling the internet and a lot of women sharing personal stories of miscarriage and stillbirth on social media.  The stories are often heartbreaking. But the sharing of them is wonderful.  As more women talk about their experience, the stigma around miscarriage lessens. As the general public becomes more aware of the burden of pregnancy loss, better support systems can be put in place for families.  I am inspired by and grateful for every person who is engaging in the conversation this month.  And sometimes it is also too much for me. 

I consider myself to be in a stable phase of my fertility journey.  I am not actively trying to get pregnant, which has removed some of the psychological pressure I was putting on myself and reduced my emotional frenzy.  I have been seeing a therapist for almost two years to work through my shame and grief.  As a result, I have created enough space to allow me to hear other people’s pain with compassion, and participate in infertility and miscarriage communities and conversations.  That’s why I started this blog; I was finally ready and able to participate. 

There is a HUGE community of infertility and miscarriage bloggers.  There are more than a few published memoirs on infertility and pregnancy loss, and a growing number of podcasts.  There are whole companies dedicated to supporting women trying to build their families.  But for the first four years of my fertility journey, I didn’t know any of it existed, and I didn’t want to. I don’t think I would have even read my own blog four years ago.  A woman who had lost six pregnancies and still had no baby, who talked at length about disappointment and grief… it would have been too overwhelming. 

It is incredible and brave when women share their story.  We should celebrate those women. But it is equally important to recognize the women who don’t share because it is either too hard or their pain is too fresh.

John Legend and Chrissy Teigen shared some of their most vulnerable moments with the world last week.  It was devastating and powerful; and some women couldn’t hear it, or care.  Not because they don’t think it’s sad, but because it requires all their energy to care for themselves.  Sometimes you only have the strength to carry your own experience.  Sometimes you have nothing left to hold other people’s emotions.  And that’s ok. We are all in different places and phases.

I recently read a story of a women who had 13 miscarriages; and then she had a baby.  Reading this brought up several distinct thoughts for me: (1) Joy. Yay, good for her! (2) Jealousy. Dammit, why did it work out for her but not me?!  (3) Befuddlement. How had she endured 13 losses? I was emotionally shattered from six. (4) Self-doubt. Was I just weak? Should have tried harder? 

Even after my self-work and supposed emotional “stability,” rather than be inspired by her story, I was hopeless, self-critical, jealous, and defensive.   I would love to get to a point where I can hear stories like this without such messy feelings, but it will take more time and work.  I am still healing. 

Some women derive strength from miscarriage and infertility stories.  Engaging with others gives them hope, normalizes their feelings, and makes them feel less alone.  But there also women like me who – while wanting all those things – can’t always safely let others into that tender place. 

Hearing other people’s stories about infant and pregnancy loss can be triggering.  It’s ok.  You don’t have to engage – with either your pregnant friends, or your bereaved ones.  You are allowed to take the time and space you need to heal.  It doesn’t mean you don’t understand that other women are hurting.  It doesn’t mean you lack perspective, are weak minded, or cold hearted.  It just means healing is hard. October is still for you.  I’m sorry for your loss and pray you will find support and peace as and how you need it.

PCOS Awareness Month

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September is PCOS Awareness Month, so I want to take the opportunity to do a little PCOS PSA.  (Although, I’ve never approached a post in this way before, so feel free to let me know if it’s useful.)

PCOS stands for “polycystic ovary syndrome” or “polycystic ovarian syndrome.”  It is: a common health problem caused by an imbalance of reproductive hormones. The hormonal imbalance creates problems in the ovaries. With PCOS, the egg may not develop as it should or it may not be released during ovulation as it should be.(www.womenshealth.gov)

PCOS impacts 1 in 10 women and is the leading cause of infertility.

Understanding and awareness of PCOS has increased dramatically in recent years, and the PCOS Challenge, an international nonprofit, has done a great job educating women about the disease and advocating for support and research.

This is important because I think historically doctors had a very specific idea of how a PCOS patient would present.  In fact, when I was first told I might have PCOS, I distinctly remember one doctor/friend (luckily a non-ob/gyn), telling me that I couldn’t have PCOS because I wasn’t overweight and didn’t have a beard.

There are several things upsetting about this comment, not the least of which is that I am actually incredibly sensitive about my level of facial hair!  More importantly, it paints a very narrow picture of PCOS, when in actuality the syndrome can manifest quite differently from woman to woman.  The name itself is even somewhat misleading because not every woman with PCOS will have polycystic ovaries.  Instead, there are a number of PCOS symptoms any one of which may or may not be expressed in a PCOS patient.  This is why many women with PCOS are improperly diagnosed or undiagnosed (according to PCOS Challenge).  

The first time a doctor suggested I might have PCOS was in 2012 when I didn’t get my period for 6 months after going off birth control.  I don’t even think she ran blood tests, she just said PCOS was something we “may want to investigate” if my cycle didn’t return.  Of course, this passing remark sent me down the internet rabbit hole.  Dr. Google convinced me I did indeed have PCOS, and a plethora of online gurus promised to cure me if I would only cut EVERYTHING out of my diet, exercise daily, and learn to be more mindful.  (Please note my heavy cynicism here…)

That said, paranoid about insulin resistance (commonly associated with PCOS) and the risk of diabetes, I did start jogging more often and became slightly more conscious about my diet.  Smart moves regardless of whether I had PCOS.  And related or not, my periods did return to a regular – if slightly extended – cycle.  I didn’t think any more about it until I went through my first infertility work up. 

During an ultrasound, my care team noted the characteristic “string of pearls” around my ovaries indicating that multiple follicles were developing at the same time (another common characteristic of PCOS).  But while I had polycystic appearing ovaries, my hormone levels were within range, so I did not meet the strict clinical criteria for a definitive diagnosis.  I was also not obviously insulin resistant.  My blood sugar was normal, albeit on the upper end of the normal range. 

Still I was given metformin (a drug that helps control blood sugar), told to limit my carbs, and try to lose 5% of my body weight.  It was one of many times when diagnostics revealed nothing conclusive, but I was treated anyway… just in case… just because we all wanted to feel like we were doing something. 

As it turned out, PCOS was not the villain in my fertility story. While PCOS is known to be related to infertility, its link to miscarriage is still medically debatable.  However, it may still have a role to play in my long-term health.  Here are some scary facts (source):

  • Women with PCOS constitute the largest group of women at risk for developing cardiovascular disease and type 2 diabetes.
  • Some studies have shown women with PCOS to be at three times higher risk for endometrial cancer and may also be at increased risk for ovarian and breast cancer.
  • Some studies have shown due to symptoms of anxiety and depression, suicide attempts are up to seven times more common in women with PCOS than other women.

If you think you may have PCOS, please talk to your doctor.

If you are looking for supportive resources, here are a few I’ve found.  This is certainly not exhaustive.

  • PCOS Challenge a non-profit advocacy and patient support organization
  • “PCOS for Dummies” (link) good for the basics
  • “PCOS Diet for the Newly Diagnosed” (link) I have enjoyed many of recipes in this book, so much so that it survived my “tidying up” purge
  • “8 Steps to Reverse Your PCOS” (link) I liked how this book was structured, and the detail it went into around tests and results, but it definitely takes a naturopathic and integrated medicine approach which you should be aware of before reading

There is a booming online community of women with PCOS. If you have this diagnosis, please know that you are not alone. It can feel frightening and demoralizing to learn you have a chronic health condition that must be managed. But there are people and resources that can help, and we each have strength more than we know. And after all, RBG said, “So often in life, things that you regard as an impediment turn out to be great, good fortune.”

All the good things and the bad things that may be…

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It is impossible to fully address the topic of infertility without talking about sex.  But if I have sometimes been ashamed to discuss my fertility challenges, I have been absolutely loath to bring up its impact on my sex life.  Sharing this aspect of myself feels like inviting spectators into my bedroom to examine the sheets.  Yet it cannot be ignored.  Miscarriage and infertility had a material impact on my sex life. I don’t believe I’m unique in this experience, and I also believe that one of the most effective ways to heal from it is to talk about it.  So, here we go, let’s talk about sex.

There are many reasons to engage in sex.  Some people chase pleasure, some like to experiment, others seek out fantasy – a way to escape themselves.  Mostly, I crave closeness.  I’m a hopeless romantic.  It’s why I read poetry, watch sappy movies, and listen to love songs.  I want the butterflies.  I pursue passion.

I remember the exact moment I realized I was in love with my husband.  I was on the Bryan Center walkway on Duke’s campus headed back to my dorm room when the feeling washed over me – a spark started in my heart and sent tingling waves of emotion through my nervous system and I knew. 

Falling in love was easy when I was 19.  Peering over the precipice of adulthood, I knew it was not a trip I wanted to take alone.  Every conversation and every interaction I had with my husband felt vital to my future.  Intimacy was as essential as breathing.  I wanted to blend into him until we were of one mind and one body, or as Kahlil Gibran says, “to melt and be like a running brook that sings its melody to the night.” 

With time and maturity I disentangled from him and became my own individual within our relationship, and the focus of sex changed from conjoinment to connection.  That’s why it felt exciting and appropriate to embark on a journey of family planning.  It gave our love a purpose – the opportunity to create something.  And when we got pregnant, I felt like our love transmuted into something sacred inside of me.  That is, until my body betrayed me.

Miscarriage was traumatizing.  There was the physical pain – obviously – but there was also the psychological feeling that my body had been violated and that I was no longer in control of my person.  The resulting impact on my relationship was significant.  Good sex and true intimacy require vulnerability.  In order to give your body to another person, you must first let go of it yourself.  Yet after my losses, I was unable to do so.  Love and desire felt unsafe; instead of creating life, they’d invited death.  I was afraid that sex could only ever bring me to a place of sadness and pain. Compounded on that, there was one year in the middle of our losses when we couldn’t get pregnant at all.  Twelve months of trying and tracking and testing; and every month the waiting, the hoping, and ultimately, the disappointment. 

Miscarriage was hard on our marriage because we didn’t know how to talk about it, and we pulled away from each other instead of grieving together.  But our year of failed conception was something different entirely.  Disappointment dominated rather than feelings of sadness.  Sadness was exhausting and overpowering; but it was accessible.  Sadness could invite others to hold it.  Disappointment was harder to share; it was personal and bitter and brutal. 

Overt time, fear and failure defiled my sexuality.  Sex went from being an act of intimacy to a dreaded chore.  “Planned intercourse” around my ovulation felt prescribed and transactional instead of spontaneous and special – even the term was emotionless and clinical.  What should have been languorous and fun became efficient and goal oriented.  My husband struggled to understand how I could suddenly perform when I was ovulating, but otherwise needed to be in the mood. I struggled to comprehend why he could be in the mood anytime except when there was pressure on him to perform.  Many fights ensued.  Multiple nights were spent crying in separate rooms.  Then, of course, we moved on to IVF and no longer needed to have sex at all in order to get pregnant…

This was not how I had pictured my life or my relationship. We loved each other very much, but I think it’s important to admit that staying married was not a foregone conclusion. Infertility can break a relationship. A dysfunctional sex life can shatter intimacy. Some couples don’t survive this. My husband and I have been married for 11 years.  For half of those we’ve been trying to start a family.  Concerted effort and couples therapy enabled us to pull our sex life back from the brink and unshackle it from the weight of procreation, but we are still working to find the way back to one another.

There are moments when I feel hopeless in our efforts; times when I yearn to recover the innocence and abandon I felt when I was 19, though I know it is impossible. But in these moments, I’m reminded of one of the bible passages sung at our wedding: Song of Solomon chapter 8 verse 6, “Many waters cannot quench love, neither can floods drown it. For love is as strong as death.”  

Infertility and miscarriage washed over us like a flood, breaking our levees and soaking us in sorrow. But our love hasn’t been drown; so we rebuild. Brick by brick we are reconstructing our palace of emotional and physical connectedness.  Although our relationship has changed, once again “we’ll celebrate, we’ll sing, we’ll make great music.” (Song of Solomon 1:4)

Fertility is a (half)Marathon

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When I’m being melodramatic, I like to say that my sister saved my life.  In actuality, I think she saved my sanity.  I’m quite certain I would have gone into a deep depression after my second miscarriage had it not been for my sister. 

My second loss was a psychological turning point for me.  My first loss, while devastating, was possible to rationalize.  It was common, a likely genetic aberration, no cause for concern.  The second loss, however, seemed ominous.  Our experience no longer felt ordinary.  It felt wrong.  

My sister was living in LA at the time with her husband and my nephew, who had just turned one.  We were in Chicago.  Wisely, in October, about a month after the loss, my husband forced me cross-country for a weekend of emotional fortification, family and fall festivities. 

We did, in fact, carve pumpkins – really awesome ones that were shaped and painted to look like Elmo and Cookie Monster.  I believe they melted in the LA heat long before Halloween.  More importantly, the visit launched me into a physical and mental endeavor that ferried me through my pain. 

In an effort to lose her baby weight, my sister had decided to train for a half marathon.  During my visit, she dragged me along on one of her training runs.  It was only three miles, but I barely made it.  I remember being an entire block behind as she finished the run, yet she patiently waited for me as I hobbled the last length.  I was impressed, inspired and just low enough to allow her to convince me I should train with her for the full race. 

Let me be very, very clear that I am NOT a runner and never imagined I would run 13.1 miles.  At the start, I’m not even sure I believed I would make it to the end. The longest I’d ever run up until that point was a 10k Turkey Trot, and I distinctly remember hearing a spectator say, “oh, this must be the walking group” as I jogged slowly by.   But somewhere in the middle of the training, the race shifted from something I was doing solely to support my sister to a goal I HAD to achieve at a point in my life when I really needed a win. 

I know some of my readers are runners, and to you it may seem like I’m overhyping the experience, but for me the struggle was real.  We all have something (or many things) in life we wish we could achieve but believe we’re incapable of.  Our “big goal.”  Our albatross.  We want to run a marathon (or an iron man), write a novel, own a home, find true love, start a business, or… grow a family. 

My miscarriages made me feel like a failure.  I felt impatient for a family and completely out of control.  But running 13.1 miles was a goal big enough to counterbalance the weight of my grief.  It gave me back a sense of accomplishment and reminded me I had unknown strengths and faculties.

The training hurt my body.  I honestly almost ran in a shirt that read “everything hurts and I’m dying” because that’s how I felt a lot.  But the lesson I learned was that big achievements don’t come easy and that I shouldn’t expect them to.  Accomplishing something big takes time.  I am not a patient person.  Like Veruca Salt, I want everything now.  But that is not the way running works.  It is slow progress.   I have such an appreciation for the time it took to train, because it made me recognize that I can do big things, they just won’t happen all at once.  The important thing is to keep moving forward and making incremental progress – one foot in front of the other.

For months, my sister and I trained alone together from separate parts of the country.  We mapped our runs and shared our routes.  We encouraged one another and held each other accountable, and in February of 2016 we finished the race.  I was overwhelmingly proud of myself.  I finally understood that “a done something is better than a perfect nothing.”  Up until then, I had often let fear of failure or judgement stop me from doing things.  My perfectionism was debilitating and often lead to shame and unnecessary guilt.  But I never expected to break any records with the half-marathon.  I wasn’t trying to be perfect; I was just trying to finish.  Sometimes, the bravest and most perfect thing we can do is to begin and then begin again.   

My fertility journey reminds me a lot of my training for the half marathon.  It has been an imperfect mess.  It has been physically and emotionally taxing.  It has required commitment and perseverance.  It has seemed never ending.  But the goal is clear, and in the end, all I can do is run my own race. 

Et tu, Brute?

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Hello again.  It’s been several weeks since I posted.  There are some very simple explanations for this, as well as reasons which are harder to articulate. 

My July was spent with family.  First in Chicago, visiting my mom, my sister, my niece and nephews, both my grandparents, and some extended family; then driving cross-country to Seattle with my dad.  In our current socio-political environment personal travel is viewed with a lot of judgement.  While I definitely fall into a less rigid segment of quarantiners, it was a tough decision choosing to go home.  I wondered constantly if I was being irresponsible or putting lives and loved ones at risk.  In the end, my family agreed to let our love trump our fear.  So, after months of nothing but pictures, phone calls, and FaceTime, I finally got to give hugs, share meals, and spend time with those people who fill up my soul and remind me who I am and where I come from. 

I celebrated my nephew’s 6th birthday, painted his face to look like a fox, and shared his cake, littered with fun-fetti and complete with blue icing.  I sat with my mom on the first anniversary of my Grammie’s passing.  I read the Sunday lesson with my Papa and ate dinner with my Nana.  I comforted my dad after he put his cat to sleep and stayed up until the wee hours of the morning talking with my sister.  I was THERE. I was PRESENT.  I was HOME.

A lot of people live near their loved ones and have been able to do this all along despite the pandemic.  I don’t, and it has unquestionably affected my mental health.  My family feeds my spirit in a way that no one else can.  When I am with my niece and nephews, I feel grounded in the current moment and can think of nothing else.  When I spend time with my sister, I feel seen in a way that even my husband cannot achieve.  My mom gives the best hugs in the world – I could live inside her hugs.  My dad and I share such similar energy and dispositions that we could as easily talk for hours as sit in comfortable silence.  There were moments at home when I felt so overcome with emotion, I thought I might burst, as if the love I felt was too much for my body to hold inside.  And leaving broke my heart.  I will not endure 6 months away again. 

The night before my departure, as I was putting my oldest nephew to sleep, he asked why he gets to see his grandparents so frequently, but not me.  I explained that his grandparents live close by, while I live far away and have to take a plane to see him.  I said because of Covid, people have not been able to take planes as frequently as the they used to.  Then he told me a week of visiting was not long enough, and we both cried, and I was filled with rage and frustration at this virus for its continued disruption of my life, as well as a deep, deep sadness for everything it has taken from me.

My trip home is the simple explanation for why I haven’t posted.  I simply didn’t want to take time away from my family to write.  Here’s the more difficult one: this week was supposed to be the embryo transfer into our surrogate, or gestational carrier (GC).  But like so many of my family building plans, things have not proceeded according to schedule.   For health reasons of her own, last week our GC had to pull out of the agreement.  The only good news is that the embryo itself had not been thawed and remains safe and frozen here in Seattle.

So much of what I’ve blogged about until this point is in the past, so I’ve had time to process my feelings.  I’ve been able to look at my reactions with distance and compassion and find words or metaphors to describe the experiences.  But my surrogacy journey is happening now.  My mind is occupied with it, and it’s not always easy to determine how I feel about it.  Excited and hopeful?  Yes.  But also detached and cautious.   And now, sad, and disappointed.

With recurrent miscarriage, you learn to mistrust hope and temper excitement.  There are many steps between deciding to use a gestational carrier and an eventual delivery, so I’d been careful not to let my enthusiasm go too far.  I didn’t want to be disappointed again.  However, my attempts at emotional preservation were completely futile.  Despite my better judgement, I was getting excited.  Surrogacy didn’t rely on my misbehaving uterus – already the odds seemed in my favor.  So, in equal parts pragmatism and optimism, I drove a car full of hand-me-down baby supplies back from Chicago with my dad.  I talked openly and freely about the surrogacy process, our GC, and our transfer.  I even pre-wrote a blog post about the transfer (this one, which I obviously edited…) As hard as it was to engage in a process which I’m inherently separate from, I was hopeful it would all work out. 

And yet, when my fertility clinic called me to let me know the transfer was cancelled, my first thought was, “Of course it is. Why would I have expected anything else?”  I nearly started laughing. 

Then I got overwhelmingly angry.  Not at my GC, who was dealing with her diagnosis, but with God, and Fate, and the Universe in general.  “Seriously,” I thought, “am I just not supposed to be a mother?!”

That said, this loss – and it is a loss – feels different from my miscarriages.  Although there was nothing I could have done differently during my pregnancies, I still felt guilty and culpable after every loss.  I don’t with this.  Our cancelled transfer is plain old bad luck.  I am not responsible.  Interestingly, to my husband, the differences we not so pronounced.  He felt equally upset about our own losses, as the loss of this opportunity. He reminded me that there is a great deal of space between being “fine” and being “devastated” and that I still needed to practice self-compassion and self-care. 

So, after the news the last week I did the following:  First, I made myself a pan of brownies and ate it all myself.  Second, I repainted my bathroom cabinets.  Whenever I experience loss and feel out of control, I develop an urgent need (compulsion?) to make forward progress in another area of my life.  This time it was home remodeling.  Third, I binged on some TV and movie favorites – re-watched Fleabag and made repeat viewings of Call Me By Your Name.  Lastly, I drank Champagne.  I had been saving the bubbles to toast a successful transfer on Thursday.  Instead, I toasted myself, my husband, our marriage, and our continued perseverance.  We haven’t found our pot of gold at the end of the rainbow yet, but we’re still looking for it.

My Third Miscarriage

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Note: 35 is the age after which your pregnancies are automatically considered “high risk”

I don’t spend a lot of time thinking of or talking about my third miscarriage.  There were so many things going on in my life at that point that the loss was gobbled up by other events.  But while the miscarriage itself isn’t crystalized in my memory; it represents a turning point in my life and my infertility journey.  It irrevocably fractured my resolve and changed the nature of my grief. 

My first job after university was as a Teach for America corps member in Houston.  During my first-year, one of my students came to class with a kitten inside her jacket.  It happened that I was leaving early that day, so I took the kitten with me intent on giving it back to her once I spoke to her parents and confirmed they were alright with her keeping the animal.  However, destiny determined she should be mine.  I named her Pepper and she was my first fur baby – a tiny, tenacious, grey ball of fluff.   She liked me best of all the humans, and there were times I might have chosen her over humans in my life.  She was one of my comforts during sadness.  

After our second loss, we tried to get pregnant again for a year with no success (more on that in a later post), so we made the decision to see a specialist.  The same doctor had been independently recommended to me from two friends, which I took as a sign, so it was her with whom I made my first appointment.  However, I have learned after the fact that we started the medical phase of our journey rather atypically. 

The doctor we saw was quietly intelligent, active in research and education, but specialized in reproductive immunology – a field not well accepted withing reproductive medicine where most doctors focus on reproductive endocrinology.  That our immune system plays a role in fertility and pregnancy is well recognized; however, evidence that immune therapies improve pregnancy outcomes is mixed.  Thus, usually patients arrive at reproductive immunology when all traditional treatments have failed them, not as a first stop. 

Regardless, she took us through the standard infertility workup – a battery of blood tests and physical examinations – as well has her own investigative protocol, and diagnosed me with a myriad of clinical and sub-clinical conditions that potentially contributed to our infertility and losses.  Then she started me on a LOT of medicine.  I began taking four different prescriptions, multiple supplements, and daily injections. 

Ever the over achiever, I adhered to her regimen to the extreme. She told me to limit my carbs, so I stopped eating refined sugar all together. She explained we were trying to reduce my inflammation levels, so I cut out dairy and gluten and began taking turmeric and milk thistle and other things that Dr. Google proclaimed to be anti-inflammatory. I proactively stopped consuming caffeine. I began a daily yoga regimen. I viewed my body as a problem that could be solved. I was convinced that being the perfect patient would result in a perfect pregnancy. And after one surgery and six months of treatments with her we were finally ready to do our first “natural cycle.” (I still find it hilarious that what we were doing was considered “natural.” We were told to have sex at a prescribed time after taking prescribed medications – there was nothing “natural” about it.)

Our prescribed time happened to be while my husband was supposed to be out of town. We were in the process of moving from Chicago to Seattle, and he had planned a two-week, cross-country road trip before starting his new job. We could have waited another month to try, but during fertility treatments, a month feels like an eternity. Every day it felt like I was closer and closer to the 35-year-old cliff when I would become medically “high-risk,” all my eggs would dry up, and I would never be a mother. So, much to my husband’s disappointment, I forced him to truncate his trip and bring me along. I’m pretty sure we got pregnant in a hotel somewhere in North Dakota. I didn’t care. I could manage his displeasure. It would all be worth it when we had our child. The positive pregnancy test only served to reinforce my conviction.

A month later, two things brought from my high horse to my knees:

  1. My mom called to tell me that Pepper had stopped eating.  (We had left our cats with my mom while we stayed in corporate housing and looked for a permanent place in Seattle).
  2. I started spotting. 

I flew back to Chicago on a Monday afternoon to see my doctor and the vet. 

The week commenced hopefully.  I reduced my blood thinners and stopped spotting.  Pepper showed no signs of infection and her liver panel came back clean.  But in the days that followed she still wouldn’t eat.  The vet treated her empirically with antibiotics while I hand fed her baby food and pumpkin puree, but nothing helped.  On top of that, my Thursday blood test indicated a probable miscarriage.  I told my husband he needed to fly back as well. 

On Friday, I had an appointment with our doctor which he attended.  The ultrasound confirmed a miscarriage.  On Saturday, Pepper lost the use of her hind legs, and we took her to an emergency vet where she was put to sleep. 

I can’t think of these two events separately because they are so intertwined.  Nor can I say which hurt worse because all I felt was deep aching and emptiness.  In the days that followed I remember regularly rubbing my chest in a misguided effort to massage the pain in my heart.

I completely broke.  I had done everything my doctor told me to the letter, but the outcome was the same.  Moreover, I felt horribly responsible for Pepper’s death.  I berated myself for not having recognized her reduced appetite, for not taking her to the vet early enough, and for not giving her enough attention over her final few weeks.  I felt I had failed her and failed myself.

It’s hard to tell which feelings and which reactions resulted from which loss.  But the result was a complete abandonment of rationality and self-control.  I went from conscientiously dieting in order to control my blood sugar and inflammation to what I can only describe as rage eating.  I aggressively binged.  I ate chocolate and sugar and cheese and salt.  I ate to the point where I felt sick and then kept eating.  I felt so betrayed by my body, so angry at God, and so exhausted from months of self-discipline, that I took back control forcibly, if unhealthily.  I was a rubber band stretched too far, and I snapped back.

I also obsessed over my cat.  I wrote lists of things I loved about her, made slide shows of her pictures, and had her image printed on a large pillow.  I think I did some of these things because I found it easier to grieve the loss of Pepper than my pregnancy.  She had lived, after all.   I could do all the “normal” activities.  I could memorialize her remains.  I could talk about my memories.  I could transition from having her to not having her.  I have never been able to do that with my miscarriages although many women do.  Some women have memorials for their lost pregnancies, or paint pictures of their “angel babies,” or save ultrasound images, or purchase baby shoes and teddy bears to help formalize the loss and move on from it.  Those actions never felt authentic to me, and maybe that’s why I struggled so much.  Pain is like poison; we need to suck it out of the wound, or it will fester. 

I wish I could go back in time and give myself a hug.  The sentiments in the above paragraphs are meant to represent how I felt at the time. But I think it’s vitally important for me (and my readers) to recognize some of my false narratives: 

  • I was single-minded in my efforts to get pregnant to the detriment of my marriage, mental health, and personal schedules. My priorities were clear, but my life was unbalanced.
  • I tried to overcome infertility by rigorously controlling everything I put into my body, but it simply does not work that way.
  • I felt weak for failing to maintain my self-control after the miscarriage; but sugary, fatty foods release dopamine, which is a brain chemical that makes us feel better. I was deeply sad and just trying to feel better.
  • I thought I was responsible for Pepper’s death (who most likely died of lymphoma), when there was nothing I could have done to prevent her from getting sick. And even if I had known of the cancer earlier, I’m not certain treatment would have been the right option.
  • I disenfranchised my own grief, by minimizing it and refusing to memorialize my pregnancy losses. But in doing so, unintentionally prolonged my recovery.

I must learn to be kinder to myself. We must all learn to be kinder to ourselves. There’s a Garfunkel and Oates song I find absolutely hysterical called 29/31 in which the same woman sings about her life perspective from two years apart. The 29-year-old is filled with hope for her future, while the 31-year-old thinks her life is over. The rosy view of the 29-year old is how I felt when we first started trying to conceive, while the fatalistic view of the 31-year-old is absolutely how I felt each passing month of fertility treatments. But I wish the song had an epilogue. Because the 31-year-old woman’s perspective will shift again, and again, and again. So, while it’s laughable how much our world view can change in such a short time, it’s also critical to remember this current view will not last.

Why Doesn’t She Just…?

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This week I’ve been thinking a lot about personal choice.  Specifically, the incongruousness between emotions and principles that cause us to make unexpected choices.  

Many of us spend far too much time in our head worrying about the future – imagining all the possible situations we might find ourselves in and how we would respond.  This gives us the illusion of control.  We feel prepared.  There’s a quote by French philosopher Michel de Montaigne which has always hit me close to home: My life has been full of terrible misfortunes, most of which never happened.

Still, we ruminate on potential catastrophes.  We judge other people’s behavior. How could she stay with her cheating husband? Why didn’t he do more to manage his son’s addiction? How could she terminate her pregnancy? Why don’t they just adopt? It seems so simple in our heads.  If those were our circumstances, we know exactly how we’d behave.  We would never put up with that.  We would never allow this to happen.  We are sure.

But in my experience, when faced with a challenging situation, even one I’d previously imagined, the choices I ended up making were unanticipated.  The moment was never quite as I pictured it.  At the point of choosing, my feelings conflicted with my ideologies in ways I didn’t consider.  It was harder than I thought.  And I surprised myself.

There have been three major decisions I’ve made so far on my journey to motherhood that I would not have expected.  The first was our decision to keep trying rather than adopt.  Before my losses, adoption seemed like such an easy solution.  “They can’t have kids?  No problem, they can adopt.” There were kids without parents, and parents without kids <boom> family.  

If we had pursued adoption, I would probably by a parent by now.  But my husband only wants one kid (he thinks… we’ll see…) and it proved harder than I thought to let go of my desire to have my own baby.  I wanted to carry my child.  I wanted to feel her kick inside my belly.  Even though I know pregnancy is not parenthood, it was an experience I craved.  So, I continued to try, possibly past the point of sanity, certainly past the point I assumed I would. 

The second was our decision about what to do with our unused embryos – our “frosties” as they are sometimes called.  There are four common options: (1) destroy them; (2) donate them to other couples; (3) donate them to science, or; (4) do a “compassionate transfer” where they transfer the embryo to you at a point in your cycle when implantation would be unlikely.  Our clinic doesn’t offer option four, but I wouldn’t have chosen it anyway.  To me it seems like an intentional miscarriage and I’ve had quite enough of that. 

When first faced with this decision, I had an immediate and visceral reaction against the idea of donating our embryos to other couples.  Again, I was surprised.  It felt selfish not to donate them; I understood and empathized with other couples suffering infertility and wanted to do anything I could to help them try to conceive.  But emotionally, I couldn’t imagine another couple raising “my child” when I couldn’t.  If my embryos grew into humans, I needed to know them.

The third decision that surprised me was our choice to pursue surrogacy.  The first time I remember hearing about gestational surrogacy was when Sarah Jessica Parker and Matthew Broderick used a gestational carrier to have their twins.  Candidly, I remember thinking, “Fantastic, now rich people don’t even have to get fat to have kids.” Oh, how terribly ignorant I was.  What sweet, sweet lies I told myself.  I wondered why people went to such trouble to have their own children.  I mean, why didn’t they just adopt? Ha!

Then my husband and I found ourselves at 36, with six failed pregnancies, five remaining frosties (3 male, 2 female), and a misbehaving uterus.  Our options were to keep trying ourselves, choose to live without children, adopt, or use a gestational carrier. We chose surrogacy.

Sometimes I feel ashamed that we chose not to adopt.  I’m clearly defective – it’s not as if my DNA is going to benefit the gene pool.  But part of what excites me about parenthood is the continuation of my family tree.  I want to see myself and my husband combined into a tiny human.  I want to identify traits that have been passed down from our parents and grandparents. And that’s okay.  Would I make a different choice if we didn’t have the embryos?  Probably.

That’s why it’s dangerous to judge others’ choices or rigidly adhere to our expectations for the future – because context matters when we make decisions.  Even the bible tells us this:  For we know in part and we prophesy in part… When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became an adult, I put the ways of childhood behind me.  Our perspectives and priorities change as we age and as our life events evolve. There’s another quote in the bible: Judge not, or you too will be judged. 

Men Are From Mars

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With Father’s Day this weekend, I wanted to take the opportunity to talk about my other half.  The partner to my Misbehaving Uterus: the Sad Sack, the Bad Balls, the Naughty Nuts (thanks, KK for your clever naming, I wouldn’t have gotten here on my own!)

The male experience of miscarriage is so often overlooked.  It’s always the woman’s account that’s reported on in the news.  It’s the woman who receives the majority of our concern and all of our postpartum care.  There are plenty of reasons for this, not the least of which is a societal expectation that men should be stoic and unemotive, but the reality is that men grieve too, it just looks different. 

In the immediate aftermath of my losses my husband, like me, was deeply sad.  We held each other.  We cried.  But while I continued to wallow for days following each loss, he was able to recover his equilibrium, and so assumed the role of my caretaker.  He cooked our meals.  He brought me tea and water.  He let me watch whatever I wanted on Netflix without any complaints. I sense that he did this, in part, because being useful and of service allowed him to focus his attention away from his darker, sadder emotions. 

Regardless, from a relationship standpoint, these times fostered closeness and connection.  We were experiencing acute grief, but we were together, and we were relying on each other.  I was being cared for, as I needed; and he was given a purpose, as he needed.  In the months following our losses, those feelings of unity and shared experience were harder to maintain. 

It was easier for my husband to return to his “everyday life” than it was for me.  He was able to supplant his pain with a fervor and focus on work which I couldn’t muster.  Books will tell you that men recover more quickly from the pain of miscarriage.  I think this is because for men, the loss is strictly emotional.  Miscarriage happens inside a woman’s body, so the physical pain on top of the emotional pain, the feeling of violation and personal failure is impossible for a man to understand.  My pain endured, while my husband seemed to recover.  As a result, I began to emotionally pull away.  I felt abandoned and alone in my sadness. 

Simultaneously, my husband began shielding himself as well.  He felt guilty in his recovery. Aware that I was still grieving; he didn’t ask for what he needed because he didn’t want to overburden me.  And on those occasions when he did reach out with need, I was unable to meet him because my tank was already empty.  It was an extremely challenging time for our marriage.  We each felt so vulnerable that neither of us was able to ask for what we needed to feel close again.  We were both still hurting, it just looked different.   

I asked my husband if Father’s Day was met with the same jealousy and sorrow as Mother’s Day is for me, but he said no.  Yes, he wants to be a father.  Yes, he sometimes has moments of envy.  But the harder part for him has been watching me go through miscarriages and treatments.  He said it was like watching me be repeatedly abused without having the ability to stop it. 

The definition of “paternal” is showing kindness and care associated with a father; being protective, vigilant, or concerned.  Paternalism is also the mores for great men in American society.   My husband is certainly not representative of all men, but infertility challenged his male convention.  My miscarriages made him feel powerless and impotent when he longed to be virile and strong.

Through couples’ therapy and continuous work on communication, we’ve been able to take down some of the walls that miscarriage created.  We understand one another better, though our work is not done.  And despite our challenges and the different ways we grieved, I would not have survived pregnancy loss without him.  So, to my husband, and to all the would-be-fathers this weekend, thank you.  Father’s Day may eventually be yours too, but the craft of the father does not necessarily require children. Thank you for your attentiveness, your security, and your care on this journey. 

Striving for Empathy

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It’s hard not to be overwhelmed by the current state of our nation.  I’ve been trying to process my own feelings all week. I do not consider myself an appropriate authority to discuss race relations, and I didn’t start this blog to discuss current events.  But I can talk about grief.  I understand grief.  And I think that George Floyd’s death and the resulting protests are emblematic of the profound grief being experienced by many Americans. 

We tend to think of grief as a five-step linear process: denial, anger, bargaining, depression, acceptance.  That was the original grief model described in the 1960’s by Swiss psychiatrist Kubler-Ross after working with multiple terminally ill patients.  However, as our understanding of loss has evolved, new models have been introduced.  The most helpful I’ve seen is the “kaleidoscope of grief” which lists eight common feelings/thoughts that come and go in no particular order in the months following a loss.  These eight feelings are: 

  • Deep sadness, because you find the situation unacceptable, but can’t change it
  • Loneliness and longing for what you have lost
  • Trying to escape the pain by doing anything for relief
  • Getting on with your life and putting the past behind you
  • Accepting the situation and feeling like you will be alright
  • Questioning your sanity and seeking reassurance
  • Trying to make sense of the loss by blaming yourself (guilt) or someone else (anger)
  • Shock and denial in order to protect yourself from the impact of the loss

Since early March the world has been adjusting to a new social reality.  Hundreds of thousands of families have lost loved ones; and those of us who have not, have still dealt with the loss of our “before lives.”  We lost our sense of control and safety.  We’ve been isolated from loved ones and missed important life events.  We’ve lost jobs and incomes.  And we’re losing hope that things will ever be the same again. 

For me, and maybe for many of you, it’s easy for me to diagnose many of my quarantine actions using this kaleidoscope of grief.  I’ve been very lonely and missing my family; I’ve tried to escape through hours of Netflix; I’ve sought reassurance from many people that my quarantine actions were “appropriate”; I’ve blamed elected officials; and I’ve tried to downplay the virus and ignore its impact.  Because I can see my own behaviors through the lens of loss, I can also find the compassion for my fellow Americans who are reacting differently.  Our world has changed, and we each walk our own path to acceptance.

It has been harder for me, and maybe for some of my readers, to find the same compassion for the rioters.  Like many white Americans, I was deeply saddened by George Floyd’s death and understood the protests.  But I could not rationalize the violence until it was framed for me in the context of grief.

I assume many of my readers have experienced or know someone who experienced pregnancy loss or infertility.  If so, you understand the waves of emotions that crash over you after each failed pregnancy or each unsuccessful cycle of trying to conceive.  You understand the immense frustration that builds watching other people – no more deserving than you – build a family when you can’t.  You understand the utter desperation from feeling like you’re doing everything right but are unable to achieve your goals.  You understand the anger and rage that follows the insensitive, ignorant comments from people who have no experience with your pain.  There are times when you want to lie in bed all day and cry.  There are times when you want to run around screaming at the top of your lungs.  And there are times when you want people to see you – really see you – and recognize the depth of your agony, even if they can’t do anything about it.

But we move past infertility.  Even though our feelings of loss may never completely go away, in one way or another we all stop trying to conceive.  But you don’t ever stop being black.  So, I can understand how the recurrent experience of injustice and inequity would sometimes become too much to bear.  I imagine it must be the ultimate loss to realize that the system doesn’t work in your favor.  In that situation, I might get angry and want to break shit too.