Something More

microblog_mondays

A friend posted about the latest study making the rounds regarding miscarriage/loss and the impacts on those who experience it.  Basically, the study showed that in both the short and long term, women who experienced loss had fairly high rates of post-traumatic stress, anxiety, and depression.  I’ll admit that I myself, while very much appreciating the fact that the study (finally) validates my own experiences, rather side-eyed the amount of surprise the researchers expressed at how high the numbers came out.  Clearly, they haven’t spent much time around people going through infertility/ectopic/miscarriage/loss, because this seemed pretty obvious to me.

My friend, however, noted that the article talks about how the researchers “hope the findings will encourage women to speak more openly about miscarriage and ectopic pregnancy and help others understand the impact of early pregnancy loss on women.”  I checked it out a little further, and the article states: “Having a greater appreciation of the results hopefully with enable friends, colleagues, employers, and family members to better support women and their partners going through a pregnancy loss.”  As my friend noted, there’s very little about better helping women connect with mental health care or how the medical care of these conditions might change.

Peer support is a marvelous thing.  Openness is a marvelous thing.  I mean, I’m here, blogging about miscarriage and infertility as are a lot of others.  I have no trouble talking about my own miscarriages in real life.  Peer support and community and blogs got me through some of the darkest moments of this thing.  Peer support and speaking out and awareness matters.

But it’s not the only thing that’s necessary here.

When I was pregnant with M, I almost lost my mind through the first trimester.  Unfortunately, that’s not hyperbole.  I was anxious beyond all possible belief and struggling through panic attacks regularly.  I had intrusive flashbacks to my first pregnancy – a missed miscarriage – that left me in a terrible place.  Add in a subchorionic hematoma that also left me bleeding/spotting semi-regularly, which caused a great deal of concern thanks to my third pregnancy, and I was a total wreck.

I’m incredibly fortunate because my OB, who knew my history, had me to come in weekly through the first trimester to check for a heart beat until I could pick it up on my home doppler, then feel movement.  I do not think I could have coped and functioned otherwise, because that’s how extreme the anxiety had gotten.  I also had access to mental health/therapy, which helped at other times.  Peer support is wonderful, but I needed access to professionals and a different plan of care than the current standard.  I had it, but I’m also pretty certain I’m an exception, not the rule.

To this day, I still get an absolute pit of fear in my stomach when people announce pregnancies, separate from any sadness/jealousy left over from the infertility because I know how much can go wrong.  I breathe a sigh of relief when people pass 13, 24, 28, 32, 34 weeks’ gestation.  Ultrasound pictures, among other triggers, can still send me into flashbacks and intrusive thoughts/memories or occasionally outright panic attacks.  Part of me hates to acknowledge that despite the fact that I’ve had some good outcomes, I still struggle (yep, therapy – among other things – are a part of my life currently).

What I’m saying is, how does the medical system need to change to adjust for this study (and I say this as someone who has a career in healthcare, so this is not an abstract question for me)?  How do we connect people better with mental health professionals?  Do we need to see more follow-up appointments?  Better screening tools?

How can we encourage women to speak out about their experiences without making it a mandate, another “to do” for people already in pain?

I sincerely hope that this study is a call for new goals/initiatives/treatment plans, well beyond what currently exists, not only awareness.

This post is a part of Microblog Mondays.  If you want to read more or participate, head over to Stirrup Queens!  Thanks to Mel for originating and hosting. 

Meditating on Faith and Doubt

When I miscarried the first time, it was in the liturgical season of Advent and Christmas. At first, the ritual lighting of the advent candle each week carried special meaning, seeming to correspond beautifully with where I was in my journey. The first week the candle symbolizes hope, as I began to hope that we might have a child at last. Then preparation as Arthur and I saw the heartbeat for the first time and began to prepare our lives to welcome a baby. Finally, the third week was the candle of joy. Arthur and I had seen the heartbeat on the ultrasound for the second time, and our hearts were practically bursting with joy and thankfulness.

The next day I found out that my pregnancy was over.

I couldn’t even face going to church on the fourth and final Sunday of Advent and facing the grotesque mockery the Christmas season and promise had become for me. Hope? Joy? A virgin conceiving, a barren woman giving birth in her old age? No, not for me. Still empty. Still barren.

I remember thinking at the time that my mood was more suited for the somber season of Lent. I was wrong. Lent is, yes, a sober season for the church in which the mortality, frailty, and failings of humankind are examined. It is, however, also a season of reflection, of service, of discipline. The problem is, reflection doesn’t work out so well when the last thing you want to do is examine closely just exactly how pissed off you are with God. Discipline is all but impossible when you are struggling to achieve merely functional.

The second ectopic miscarriage happened shortly after Easter, which, given the focus of resurrection and new life around that particular church holiday just seemed cruel.

Without getting into great detail – of the sort that would require not one, but several posts – faith has never come easily to me. As a teenager and young adult, I tried really hard to fit myself into what would be termed a typical ‘evangelical’ Christian framework. This turned out to be a huge mistake. The fact is, I’m a feminist, LGBTQ rights supporter who grew up in an interfaith household, taught to respect religions other than Christianity with two parents in STEM fields and a strong belief that science and religion are not incompatible. To say I didn’t fit in would be a bit of an understatement, but I tried, ignoring or attempting to cut off the bits and pieces that didn’t fit. It was, predictably, a disaster.

As I grew into myself as an adult and began to shed the evangelicalism, I went through a few years of what I’d now term a kind of agnosticism. Oh, sure, I went to church. I said my prayers. It was strange. I couldn’t connect to any of it, but I couldn’t bring myself to leave either.

Little by little, though, my faith grew in a different way than I’d ever imagined. It was as though I’d uprooted a huge flowerbed that I’d carefully tended and nurtured, then bleakly stared through the seasons at its emptiness only to finally walk outside one day and find a bunch of wildflowers blooming in a different corner of the yard. It definitely wasn’t the faith I’d cultivated through high school and much of college, but it was there.

This discovery, however, has not left me immune to periods of uncertainty and doubt, and infertility with its attendant wreckage tends to trigger some of these times. I’ve found myself in the midst of another lately.

Trying to read something super devotional in the middle of one of these moments, is, strangely enough, generally counterproductive for me. So I usually fall back on the quiet, repetitive, memorized prayers I’ve known my whole life. The repetition is soothing, and gradually the mindlessness becomes mindful as I find myself calmed by the familiarity, able to be fully present in the prayer. Sometimes I work on icons while saying my prayers, the brushstrokes each a prayer, the physical motion bringing my mind into place.

This time, even that wasn’t working for me.

Instead of trying to speak, I finally pulled out a poor, bronze copy that I picked up at a yard sale of Michaelangelo’s Pieta. If you aren’t familiar with the work, it’s a marble sculpture of Mary cradling Christ’s body after the crucifixion. I first saw a picture of it when I was a teenager studying art and I’ve loved it ever since. There is something beautiful, sad, and evocative about it that has spoken to me for years.

I sat, staring at the statue for a while, not really thinking, just looking. In the sculpture, of course, one can read all kinds of greater, metaphysical meanings, but at that moment, what it depicted to me was simply a mother grieving. A woman cradling her beloved child, holding a grown man’s body as tenderly and gently as she did when he was an infant. A woman who knew what it meant to suffer terrible loss.

That was something I could relate to.

It doesn’t mean that I’ve got the answers. It doesn’t mean that I’m okay or fixed or healed. It does mean that for a moment, the mists that surround and sometimes shroud faith for me pulled back and I could see just a flicker of light somewhere in the distance. And for today, that’s enough.

Why I Write

“I’m tired of feeling sad,” I announced to Arthur this past weekend. “I just want to have more good days than bad days. It’s disconcerting. I mean, I’m doing all those things I’m ‘supposed’ to be doing. But I’m still really not in a good place. When does the ‘at peace’ and ‘feeling better’ part of this whole thing start?”

Right now, the answer to that question always seems to be: “Maybe tomorrow?”

So I do what it is I usually do to try to figure life out, which is to sit down at the computer and start working on whatever piece of writing I’ve got in progress. Normally, I’ll write pretty disjointedly for awhile, then go back and cull out the few good sentences from several paragraphs or even pages of dreck, and start writing again. That’s typically when I get interested or inspired and words start to flow. Edit again and then I can move on to picking out the finer technical issues, such as my propensity for using way too many commas.

I should add, the above is what happens when the writing goes well. When it doesn’t, I’ve been known to close the document and start fresh. Sometimes I come back to my old drafts when I need inspiration, when a subject becomes relevant again, or when I’m ready to face a situation that was simply too much at the time. Sometimes they just wind up buried in my drafts folder for perpetuity.

Right now, writing, along with everything else in life, is not coming particularly easily to me. I’ve started at least six different drafts of completely separate posts, closed them, tried to pull out the good bits, and then deleted everything.

Until the other day when I started writing something entirely unrelated and instead found myself writing this:

I’ve had so many wishes and daydreams. My favorite was one that consisted of me sitting with a strawberry blonde toddler with childish wispy curls, in that sort of slightly sleepy state before bed with a board book of The Runaway Bunny. If you’re not familiar with the story, it begins with a baby bunny who announces his intention to run away from home to his mother. The little bunny says he’ll turn into various things, such as a boat. The mother bunny tells the little one that she’ll turn into a wind to blow him back in the direction of home, and so on and so forth.

I loved that book as a child because it always said: I love you so much I would do anything to bring you home safely. With everything Arthur and I have gone through to bring home a baby, it had a special resonance and the idea of reading it, with that child in my arms, was one of the best things I could imagine.

It was the book I bought when I found out I was pregnant the first time. I would pull it out and read it periodically throughout the pregnancy, hoping I could somehow bring this baby home, that I would transform myself into anything to do so. When I miscarried, I couldn’t look at the book. I couldn’t do what that mother bunny had done for her little rabbit. I could not turn myself into a wind or anything else to bring my baby home.

For weeks, I’ve been trying to write about how okay I am, how much I’m healing up because I’d rather deny the reality. Because I am desperately tired of being sad. But I’m nowhere close to that point.

In the end, this is why I write: it keeps me honest.

It helps me to get through yet another day of sadness, and even if peace and acceptance aren’t in the cards today, the writing helps me to see their shadowy outlines somewhere in the future.

Maybe tomorrow.

Mirror Images

“Man, I ain’t changed, but I know I ain’t the same…”– Jakob Dylan

Around our apartment, Arthur and I have a lot of photos scattered here and there, with a fair number clustered in our den on the bookshelves. They generally span the sixteen years we’ve been together. There’s a prom photo here, one from our college graduation there, and of course, our wedding. There are also photos at friends’ weddings or family events. In most of them, I’m smiling, long curly hair hanging down, staring out of the frames.

If you were somehow standing in the den, looking at these photos, and then turned to look at the woman sitting at the desk, you’d probably notice some changes. The long hair is gone. Even only around one to two inches long, however, it’s still curly and dark as ever. There’s a large tattoo on my right back shoulder, a motif of cherry blossoms and lines from a favorite Longfellow poem. The once clear skin has been ravaged by PCOS and hormone induced acne since we started trying to conceive. There’s a wrinkle between my eyebrows that definitely wasn’t there before. I’m still tall at almost five foot ten inches, and my weight varies, but remains in roughly the same range.

When I was 28, I cut off just over two feet of my hair. I’d worn it the same way since I was in high school, and ten years later, I had discovered the odd phenomenon of being slightly startled by my reflection in the mirror. The woman who stared back at me wasn’t the image I had of myself in my head, but the changes were so subtle that I’d almost miss them until I’d catch some sort of unanticipated glimpse and think, who is this woman? So I bowed to the fact that I was, in fact, changing. I remember staring at my reflection after the stylist finished and feeling a distinct sense of satisfaction. Finally, I had stepped into and fully embodied this person I had been catching in the mirror for months.

Slowly figuring out who I would be if I am never to become Mother, Mommy, Mama, has had that similar sense of unreality, of surprise, of discovering that I don’t fit the dimensions I always imagined myself in. It’s not until we started realizing that something we took for granted may not come to life outside of our own thoughts that I found all the sticky handprints of small children over so many decisions. There are Cheerios gathering dust in the corners, an illicit doodle on one of the walls when I examine how we chose where to live, jobs, hours, even the cars we drive.

It’s almost, at times, more bewildering than it is painful as the enormity of just how much we invested in the idea that we would have children if we wanted them starts to settle in. Certainly, we’ve spent the past two years engulfed in the all-consuming wave first of trying to conceive, then testing, then treatments, but even years prior to that, we were making decisions with our seemingly-far-off-someday-maybe children vaguely hovering around the periphery.

In confronting those ways we’ve made our lives around the idea of having children, I’ve been startled again to find those subtle changes, the difference between who I was then and who I am now. Even if the next IVF works, even if we have a child or children, I can’t go back to being that woman I was before treatment and diagnosis.

So instead, I sort of tiptoe around myself, taking nothing for granted. I taste foods and ask myself if I’m eating it out of habit or if I still really enjoy the flavor. I look at relationships and how they have changed, if they still are a part of who I am now, not merely nostalgic. I think about what kind of schooling I would pursue if we have no children, how children would affect that decision. How the pieces of our marriage fit together.  Do I still like the same books?

Who is this woman? This time, there are no dramatic changes to make, no long hair to cut off to somehow make me more comfortable with this person I’ve become. Just time, slowly moving forward, discovering who she – I – is.

Follow Up Appointment

A week ago today, Arthur and I had our post-cycle follow up with the RE. As is my usual when I have an RE appointment, I had, over the past month or so, compiled a list of questions I wanted to ask. I jotted the questions down as I’d think of them, and by the time the end of May rolled around, I had a solid list. We faxed them to the clinic to place with my paperwork for the appointment.

What I did not include on that list was probably far more telling than what I did include: I opted, for the most part, to leave out the intense emotional struggle about my experiences with fertility treatments. As far as I was concerned, this was more of an issue for a therapist than an RE. I’m sure some of it bled through in the phrasing of the questions, but I mostly dismissed the whole thing as too messy and time consuming to delve into.

Walking in the door of the RE clinic was harder than I expected. It’s one of those typical medical office waiting rooms, although a little nicer than most with olive green upholstery and slightly “arty” tables sporting silk flower arrangements. It doesn’t seem like the kind of place that should provoke a deep emotional response, but it’s the very nondescript quality juxtaposed with some of my worst memories that makes it almost more weirdly upsetting. I kept up a nervous stream of chatter with Arthur as we sat and mentally placed a Frida Kahlo painting on the soothing colored wall that seemed more appropriate to my situation.

By the time we were taken back to the office and Dr. E came in to talk to us, I could physically feel the anxiety welling up. I stared at the stylized designs on my cardigan sleeves, arms tightly crossed over my chest. Relax, I kept telling myself. I unbent enough to shake Dr. E’s hand and to put what I was trying to pass off as an attentive, calm expression on my face.

That lasted for all of about 30 seconds. We got to discussing my ectopic, and Dr. E pointed out that I was fortunate, that I hadn’t had to have a blood transfusion, hadn’t needed surgery, and that I’d made it out as smoothly as it was possible. This, incidentally, is not an untrue statement and I could tell that he hadn’t made it in an insensitive or dismissive way, more simply as a statement of fact. It didn’t matter at that moment. I had had it.

“Yeah, yeah,” I interrupted, finally unable to master the caustic combination of anger, grief and anxiety chewing through me, “I know. I know I’m ‘lucky’. I get that. It could always be worse.” I felt the tears start to well up, spill over, and paused. “I can’t believe I’m having to deal with this bullsh*t disease that’s not even real.”

The fact is, even as much as I try to tell myself that infertility is a very legitimate health problem and that PCOS is definitely a disease, there is a part of me that struggles to believe that. There is always some part of me that thinks, but I could have cancer. Or kidney failure. Or a debilitating autoimmune disease. I feel guilty for feeling so awful and for not soldiering on with a brave face. This was first time, however, that I’d stated it so baldly in front of a doctor.

I was staring at the desk when I said all of this, unable to even look Dr. E in the face. There was a pause. Then Dr. E closed the folder with my questions in it, and simply said something to the effect that we could talk about the details of another IVF cycle on a different day. “These aren’t really what you’re concerned about, are they?” he asked me gently, gesturing to the folder.

Part of me, the part that wanted to leave the office with some threadbare shreds of my dignity intact wanted to say these questions are what I’m concerned about, answer those and we’ll be on our way, but I couldn’t. “No,” I admitted, “they’re not. I can’t believe this has happened to me. It all sounded when I came here just over a year ago like it was going to be so much more simple than this. When the ectopic happened, all of a sudden I’ve started to have to face the fact that this isn’t a ‘when’ any longer. It’s an ‘if’, and that’s really hard for me. I mean, I’ve known since I got diagnosed that it was an ‘if’, but there was so much to try and Dr. D was so positive. Now I have to face that I may never have a successful pregnancy.”

So we talked. I cried. Arthur was awesome and was able to calmly bring up some of the stuff we’ve been discussing at home. Dr. E told us that he was glad we wanted to take some time off before even considering starting another IVF cycle. He mentioned that I probably needed to have some professional counseling at this point. I managed to bring up the question that I have struggled with for the past months about where to draw a line in treatment. “I know we could keep doing IVF for a long time,” I started.

“No,” he said, stopping me.

Dr. E explained that another fresh cycle was medically reasonable in my case if that was what we wanted. He stated, however, that IVF was a major procedure, he could see how much distress I was in, and it definitely wasn’t something he wanted us to do over and over again. He told us that the maximum number of fresh cycles he felt comfortable doing with us was three and even that number was highly dependent on our emotional state, our wants, and whether or not new information came into play that would affect the chance of success.

It was at once what I needed to hear and what I never wanted to hear: that while IVF is still an option now, we are approaching a point where IVF would no longer be a good way for us to build our family. However, I was glad that Dr. E did not try to minimize the impact of IVF on us or the limitations of medical science in treating infertility.

Arthur and I have talked a lot about where our limits are as far as treatment. At this time, we have tentatively decided to proceed with another fresh IVF cycle probably in late August or early September to give us some time to heal and think. If we’re not ready, that’s fine too. Even with this as our current plan, we still know that both of us need to start considering what life looks like beyond fertility treatments because there are no guarantees.

The Shore

There is the grey, weak, watery light of the earliest morning against a cloudy sky that threatens rain. The sand is cool, damp, not yet warmed by sunlight.

The waves roll in, then retreat. No other sounds are audible other than the movement of the water, that moment of stillness as the wave crests and then the roar as it folds in on itself and rushes up the shore.

In the life I live in front of other people, I am fine. I get up each morning. I bathe, brush my teeth, arrange my hair. I laugh. I talk with people. I go to work. I’m a normal, functioning adult.

But when, inevitably, I find myself in the quiet spaces between the motions, I’m there on that lonely stretch of sand.

I’ve tried so many times in the last few weeks to put my grief into something tangible. The words are gone. The pencils and sketchbooks fall from my hands. What is there to say? Every action, every word tumbles into the void, never enough to fill it.

I remember going on a trip to New England in January during college and the professor taking us all out to the shore in Massachusetts, insisting that we go down and stand on the beach staring out into the wintery waves in silence. “Imagine,” he told us, “imagine that most of your life and many of the people you love are out across that ocean. Imagine that now you have to bury your dead and build an entirely new life in this place.”

Implied was the question: could you do it?

Some days, I don’t know.

There are times I want to race across the sand into the icy ocean and try to swim back to what I left on the other side. This is futile, of course. The ocean is vast, stormy, and it would be impossible for a lone woman tossed in the surf to make it more than a few miles, let alone to a safe harbor.

Occasionally, I’ll glance back at the land beyond the shore. Unknown terrain that I’m going to have to find a way to make home.

I’m not ready, though, to leave this place. The place where I am neither walking in the darkness nor fully in the light. The place where time has stopped still, the past and the future separated by a narrow strip of sand.

Counting the Cost

Back in January of 2013 when I was setting up my first RE appointment, I asked specifically for an appointment in March. This was to give both Arthur and myself some time to complete testing, take a vacation we’d already scheduled and paid for before we realized how serious the situation was, and to allow us to come to terms with the fact that we were now at a new level of intervention and care for infertility.

I also ordered some books to read during that time, one of which was Silent Sorority: A Barren Woman Gets Busy, Angry, Lost, and Found by Pamela Mahoney Tsigdinos. This might have seemed an odd choice for someone just starting their infertility journey, who hadn’t even had an IUI or an actual RE consult at that point. It’s also worth noting that the prognosis looked fairly bright, as the problem appeared to center mostly around lack of ovulation and at 30, I was fairly young. The theory went that if I could ovulate, I could probably conceive a successful pregnancy.

By that time, I’d heard the media and people talk about IVF like it was no big deal, that if I really wanted to get pregnant, technology would make it possible. I wasn’t so convinced. I knew how much emotion I’d felt when I’d gotten the PCOS diagnosis, when I’d been referred to an RE, and I had a feeling that this wasn’t going to be so easy.   At the time, I had sort of started to blindly feel around the very outer edges of an idea sitting amidst the whole infertility mess.

I had this vague intuition that the worst outcome I could imagine didn’t end with Arthur and I never having a child. Don’t get me wrong: that idea certainly was, of course, distressing for two people just starting to navigate the treacherous currents of infertility, weighing treatments and whether or not we wanted to look into adoption. But I knew, deep down, there was something much worse.

It was this: we would never figure out a way to live beyond the damage infertility had wreaked in our lives. That we would lose ourselves, each other, and everything we’d worked to build in a never-ending quest to have a baby.

Then I entered treatment.

It’s strange the tricks that treatment can play on your mind. Even though I’d gone in with what I thought was a healthy set of boundaries, before I knew it, I’d taken the headlong plunge down the rabbit hole into a world of injections, IUI, IVF, and total desperation. It’s amazing how one treatment segues into the next, how the previously almost incomprehensible idea of doing IVF suddenly starts to look like the shining beacon of hope.

Magical thinking took over my brain entirely. I felt as though if I even considered the idea of doing all these treatments and ending up without a baby to show for it, my treatments would fail. I needed to be more positive. Not think about the other potential endings to the story. Because if I even thought about the possibility of a treatment not working, it wouldn’t work. Then I’d feel guilty if I did think about it, and when the next cycle failed, I’d find myself wondering if something I’d done had caused me not to become pregnant.

This, of course, is patently ridiculous, but desperation and fear do awful things to the mind. And honestly, if my thoughts are so powerful as to actually manipulate things like embryos or my ovaries in the physical world, I’d have done it already.

The December miscarriage changed everything.

There was nothing I could have done differently to make that pregnancy work. I had diligently taken my medications and religiously followed every restriction. Except for a few quiet moments of guilt spurred by the incredible sadness, I knew I had given everything I had to keep the pregnancy healthy. There was nothing I or medical science could have done to prevent the loss.

I recently went back and reread Silent Sorority. As I read Tsigdinos’ words describing why and how she came to the decision to leave treatment and live without a child, I knew this wasn’t as theoretical an idea as it had once been. When I had first read the book, I had a number of options for treatment in front of me. Now, having been through some of the most advanced treatments that medical science has to offer for infertility, it’s much more of a possibility that Arthur and I will walk away from this table with no lasting pregnancy or child to show for it.

I needed to know that there was a life – a good life, a life worth living – if I could never become a mother. That there existed a place where it would be okay to stop treatments, not be able to adopt, and move on. I am profoundly grateful to author Tsigdinos (and others as well) for stepping forward and demystifying what life looks like after an infertility journey without children.

For the first time in our entire infertility journey, we have no obvious forward path. We have plans to meet with Dr. E in June for a follow up, and hope that maybe he can answer some of the questions we have about our IVF failures. I think at this point, both Arthur and I have a sort of tentative plan to do one further fresh IVF if Dr. E doesn’t have some sort of new information that would give the whole thing a much lower chance of success than we were hoping. We occasionally talk about the idea of adopting, but right now, the idea of doing all we would have to do – moving, saving up, completing the mountains of paperwork, working through our grief in a meaningful way – is simply overwhelming.

Arthur and I sort of accepted that when I got the PCOS diagnosis, the question about having children was an ‘if’, but there were a lot of options that made it feel a bit more like ‘when’. Perhaps in so many ways, that is one of the greatest losses that comes with this latest miscarriage other than the loss of the pregnancy itself. Suddenly, the question really has changed – at least in my mind – to ‘if’.

We’re both starting to see far more clearly what it is that Tsigdinos articulates so well in Silent Sorority: that there is a place where you realize you simply have to stop in the quest to have a child. The cost is too high. It might be financial, it might be emotional, it might be your relationship, it might be other dreams you finally realize you can’t sacrifice for “maybe”. It might be all of the above, or it might be something specific to you alone.

I genuinely don’t know right now where that place is for us. Is it after another IVF?  Is it further down the road?  Is it if there are more physical issues discovered?  What kind of adoption options would we consider?  I suppose the next leg of the journey probably has something to do with figuring that out.