“When your fear touches someone’s pain, it becomes pity, when your love touches someone’s pain, it become compassion.” ― Stephen Levine
Five years ago I tried to start writing a book, which came out as little essays, which I turned into blog posts and which I now, with some modifications, have reassembled as a book. Like grief, it wasn’t a straight path.
As we enter Pregnancy Loss and Infant Death Awareness month, I am very pleased to announce the release of that book, At a Loss: Finding Your Way After Miscarriage, Stillbirth or Infant Death. I hope it is useful to you or someone you know. Below is the link to Amazon, where it is available as a paperback and e-book. It is also available through other online retailers.
“The human species thinks in metaphors and learns through stories.”
Mary Catherine Bateson
“Have you watched that show?” “The character had a miscarriage and her whole family reacted like it mattered.”
“There was an article in the paper about someone who had a similar type of loss as mine– I’m glad that the topic is getting some attention.”
“Reading that book was powerful— her story was different from mine but I had the same feelings she did.”
My friend John is a movie buff. During a conversation a few months ago, he encouraged me to see Roma on the biggest screen possible because the location and style of filming are so stunning. Although it was playing in a nearby theater, I watched it instead on my laptop, reminding myself as I started that I could slam the screen down at any time.
The part I was worried about getting through was the frank depiction of a stillbirth, first pointed out to me in an email from a past leader of neonatal loss groups. She had loved the film but also wanted to give people a trigger warning about the content. I believe that such warnings can be very helpful in minimizing or avoiding trauma through re-exposure and can also just give information that guides us in deciding what we are up for viewing. I’ve found it useful at times to know something about what’s in a film and to make a decision about whether I want to watch it at all and, if so, when and under what circumstances.
Of course, most of life doesn’t come with warning labels. We may feel great pain watching a commercial, driving past a hospital or hearing someone being called our baby’s name. Our movements through the world are going to take us into difficult feelings, despite our best efforts. It makes sense for us to take care of ourselves as well as we can, including protecting ourselves when we have the ability and need to do so.
I’m pretty sure that I wouldn’t have wanted to see Roma in the early months, maybe years, after my losses. I remember being cautious about what I saw and how strong my reactions were when I went outside my comfort zone. I also recall when members of the pregnancy loss group that I led spoke about how affected they were when watching the kid movies Finding Nemo and Up because of their themes of loss. Even the stories that are designed for children may not feel safe enough.
In considering Roma though, I felt pulled toward both the story and a scene with a version of baby loss that so many people were viewing. I wanted to know if I would see some reflection of myself or maybe of others I’ve known. I wanted to see if there would be meaning for me or if I would just need to pull away.
I didn’t end up slamming down my computer screen or fast forwarding through the stillbirth scene. I couldn’t even look away, although I somehow don’t think I saw everything. It was gut wrenching, heartbreaking, and I can see why some in the loss community wanted to be given a heads up about what was coming or for the scene to be different. I’m also glad I saw it.
I certainly felt a lot of emotion watching Roma, just as I have when watching other movies or shows involving a pregnancy or infant loss. But after the repeated holding of my breath and crying throughout the very long scene in question and then sitting through the rest of the movie, I felt strangely calm. For me, seeing a realistic depiction of loss from the outside made something inside me feel a bit more revealed and settled.
It strikes me that, similar to warning labels, life doesn’t always come with healing labels either. I’ve had people tell me about TV shows, movies, articles, books and other information floating around in the world that resonated with them emotionally and provided some relief from feeling isolated in their experience. Sometimes stories give us hope, deeper understanding or connection with another. They may give us some of the solace that we seek.
This is absolutely not a recommendation for anyone to expose themselves to provocative and upsetting material, only acknowledging that between people and even within the course of an individual life, what is distressing or helpful may vary. It is also an invitation to consider that since so many images and stories are offered to us on a daily basis, we might want to bring awareness to the types of information on baby loss that’s out there and see if any of it is right for us.
When others take on the subject of perinatal loss, whether in popular culture, clinical material and, in some cases, politics or news, it invites us to glance at our memories. It can be another way to look at and maybe integrate our loss into our lives a bit more as we see it from yet another place in time or point of view. Grief is a long road, with lots of opportunities to see part of our inner experience mirrored and distilled.
As a society, it seems that we’re showing more interest in going to these places than we did in the past. We see miscarriage, stillbirth and other types of neonatal loss shown as an impactful and real life event in our more recent television (This is Us), movies (Return to Zero, Don’t Talk About the Baby), and memoirs that give us first person reports (The Rules Do Not Apply by Ariel Levy and Poor Your Soul by Mira Pticin). On the road more irreverently traveled, occasionally someone tells their story with humor firmly intertwined with the pain as with Monica Murphy Lemoine’s Knocked Up, Knocked Down.
Some books on pregnancy and infant loss have been clinical, and they explain and speak to a relevant part of the journey, often including instructive and meaningful case examples that may speak to us. Coming from a different angle, articles on the racial disparities of perinatal outcomes have been informing us that African-American women experience miscarriage, stillbirth, preterm birth and infant death at a significantly higher rate than white women in our country. These pieces sound an alarm about our need to better understand medical and social factors that contribute to these tragedies. For many people, the articles may resonate with their own medical past and emotional pain.
Some writing on baby loss includes poetry, which may feel appropriate and useful for describing some of the “beyondness” of something bigger and more awful than our daily range of experience. In a time where we may feel at a loss for words, this type of writing may provide comfort and way to describe and more fully understand our experience of baby loss.
The proliferation of blogs has also included significant contributions as well. Writers in this medium offer individual versions of miscarriage, stillbirth, loss due to prenatal diagnosis and infant death, often with an unvarnished presentation of the shorter and longer term experience of living after these losses. In addition to the many individual blogs, Still Standing is a site devoted to writings about child (and perinatal) loss and the overlapping topic of infertility. The site Modern Loss has a section just for miscarriage and stillbirth. In our time of the “Me Too” movement and social media, it seems fitting that we have more immediate and overt ways of stating what previously was often kept hidden or minimized. One way or another, our stories are coming out.
This week I finished reading The Snow Child by Eowyn Ivey, a novel that is and isn’t about pregnancy loss. Like certain moments in watching something on a screen or hearing a conversation, it moved something in me related to grief. It’s set in a rural Alaskan landscape of the 1920s, a world far removed from mine. The story seemed full of cycles, and reminded me of how many times in our lives, voluntarily and by accident, we turn toward and away from memories and feelings about our loss. Ivey’s description of bereavement in harsh and beautiful circumstances was quite vivid, and I think it will stay with me for a long time.
“A miscarriage is lonely, painful, and demoralising almost on a cellular level.” Michelle Obama, Becoming
The remarkable and accomplished former first lady’s candid statements about her personal loss are welcomed by many of us who have had the common, and often emotionally devastating, experience of miscarriage. By including this part of her life in her new book, Ms. Obama has helped to continue to push open the door to this national discussion about how we are affected by perinatal loss and what can help.
In an attempt to add a bit to this conversation, I’m attaching the following excerpt from my book At a Loss: Living and Growing After Miscarriage, Stillbirth and Infant Death. I think the technical term for my book at this moment might actually be manuscript, but it is complete and I’m working to find the right publisher. I’d like to also take this opportunity to extend a big thanks to everyone for your support of this project– your words and faith in the book have meant a lot to me.
I don’t need a cloak to become invisible. —J. K. Rowling, Harry Potter and the Sorcerer’s Stone
“We had a family gathering, and no one mentioned the baby.”
“It’s been weeks since anyone checked in with me to see how I’m doing.”
“I told my friend I was having a hard day, and she said she couldn’t understand why I was still so upset.”
When I was in my early twenties, one of my best friends lost her second child. She was at full term with a baby boy and found out just before delivery that he had passed away. I had recently moved from the Midwest to California and learned all of this from a distance. As the details came in, I was sad, horrified, and uncomfortably helpless. I was also, unfortunately, too naïve to really understand or empathize.
As a young, single woman who had no experience with pregnancy or parenting, I could only try to imagine what my friend was going through. It seemed surreal, like something that would happen to people I didn’t know. My heart ached for her, and I repeatedly made brief, awkward attempts to express my sympathy over the phone.
As I heard that my friend had named her son, visited his grave daily, and spent much of her day crying, I felt sympathetic—and then, within weeks, a bit uncomfortable and even judgmental. When the weeks turned into months, I continued to reach out with periodic, strained attempts at conversation, while my internal judgments grew louder. It seemed strange to me that she would grieve so intensely for someone who (I believed) had never truly been in the world. She didn’t really know him, right? She already had one living child and certainly could expect to have more. Could she be making too much of her loss? Was she somehow making it worse? Might she be committing the crime (as we Midwesterners tend to see it) of being raw and open about intense feelings?
Kenneth Doka coined the phrase “disenfranchised grief” to refer to the pain of certain types of losses that are commonly unrecognized or minimized by society. These include losses that society views negatively, such as loss of a loved one through suicide, and those that are somehow hidden, such as a miscarriage.
Another type of perinatal loss that happens to some of us are terminations due to a prenatal diagnosis, such as a chromosomal abnormality that is incompatible with life or seriously threatens the quality of life. These losses are often experienced as a disenfranchised grief. Abortion—even when it may not feel like a choice—is a loss that many in our circle may view negatively. It may lead those of us in this situation to not even tell friends or family about our pregnancy or how and why it ended.
Support from family, friends, and even strangers is one of the ways we humans get through grief. When you have to grieve without these expressions of care and concern, you may feel the added burden of isolation on top of the loss. If other people don’t validate your strong feelings, you may feel ashamed of them. You are, in a sense, grieving without permission and without the recognition that your loss warrants a full experience of mourning.
Sometimes the expression of care isn’t missing; it’s inauthentic or inept. This, too, can add to your pain and suffering. To my knowledge, no one has ever felt helped by hearing (or sensing from their friend’s unspoken communication) that she is overreacting to the loss of her baby. Grief is not a disease, it’s not a choice, and it’s certainly not something we can be talked out of.
In those moments when people just aren’t there for you, or when they minimize your pain, it can help to know that it may be because they just don’t understand your grief experience. It can also help to know that awareness of baby loss is growing and that whether or not you have met them yet, there are people on your planet who understand why you are feeling the way you are feeling.
Your loss is understandably devastating, and it may be taking up much of your energy. You are having your own experience of grief, and you don’t have to spend extra energy worrying that you are doing it right in the eyes of others. As Joanne Cacciatore writes in Bearing the Unbearable, “…if grief is a disease, so too must be love.”
“Taking steps is easy/Standing still is hard” Regina Spektor, You’ve Got Time
“Just for a moment, let’s be still.” The Head and the Heart, Let’s Be Still
In the first couple of weeks after I lost my baby, I wrote some poems. Prior to that time, I hadn’t written poetry since high school and never voluntarily. It was not and is not “my thing”.
One of my poems was basically a fantasy about how I could have “fought back” against the events at the hospital after getting the news that something was going wrong with my pregnancy. In my reimagined version, instead of cooperating with the medical monitoring to determine that my baby had no heartbeat, having labor induced and allowing myself to be escorted through the labor and delivery process, I instead overturned the equipment, picked up a rock and then used it to shatter the scene.
Looking back over 14 years later, I can read a lot into that poem. But the visceral memory and accompanying word that stands out for me today is vulnerable. I remember lying in the hospital bed feeling emotionally and physically exposed to the elements. It was this state that preceded and led to those thoughts about fighting back. I remember sensing that I had no defenses, no power and had no ability to do anything of consequence.
Baby loss puts us in a state of vulnerability. Not the kind of vulnerability where we may choose to take a risk in the service of personal growth. More like the ground shaking beneath your feet, house spinning in the tornado, canoe going over the waterfall version of vulnerable. It’s involuntary and overwhelming.
When we are in such a place, we are beyond protecting ourselves in the usual and customary manner. The walls are down throughout the castle and the bad thing can find us. It may be loss, hurt, trauma or all of the above.
After losing a baby, we may (consistently or episodically) have a strong impulse to do something. We may have a strong desire to undo our loss, however unrealistic that may be. We might feel a need to take the advanced placement course in grief so we can do it faster and better and get back to the life we were expecting. We may have an impulse to make a quick decision to begin trying again for another baby. Or maybe we feel compelled to return to work as soon as possible in order to bury ourselves in something other than the pain and fear that is our grief.
It is perfectly understandable that at such a time, we may feel a need to take action and we may need distractions.
We may also at times need something much quieter to help us heal ourselves.
If you’ve ever taken a yoga class, you probably remember the final pose called Savasana or “the corpse” pose. After whatever style and duration of practice–complete with conscious breathing, seeing the world from different physical perspectives and stretching with varying intensity– we are instructed to lie down on our backs with eyes closed, limbs loose, palms up and to release any remaining tension in the body.
From a physical point of view, the corpse pose seems to be one of extreme vulnerability. We choose to temporarily make ourselves immobile and blind while stretched out on the ground among other people. Our hands are empty and open. And rather than being vigilant about the whole thing, we are instructed to relax. It’s a seemingly simple exercise that can go deep. Some say it is a time to let the mind and body process what has happened in the session. Some say it is a time to focus on nothing and meditate without the distraction of movement. I’ve heard more than one teacher call it the hardest pose.
Richard Rosen, in the online version of Yoga Journal (Aug 2007), states that “in corpse pose, we symbolically ‘die’ to our old ways of thinking and doing”. He also advises us to “Remember the words of the great sage Abhinavagupta: ‘Abandon nothing. Take up nothing. Rest, abide in yourself, just as you are.’”
After my loss, I was not so much into the idea of abiding in myself. I wanted to resist what had happened. Failing that, I wanted to do something to rush through the awful looking season of grief in front of me. I’ve seen this look and impulse now in so many faces– the one that says “I need to get out of this feeling- NOW.”
Following a drastic injury to our lives, we may experience the need to fight back with all we have. Not taking action may feel weak, and exacerbate a sense of vulnerability. If grief is going to be a long journey, we may feel like we should hurry up and get on with it. But despite the rush to feel something else, there might be reasons to take a moment to slow down or be still.
After having our heart broken we usually aren’t ready to be in the fast lane for anything. It’s hard to heal when we’re always in motion. And grief is known to be a generally exhausting time in which we need fewer responsibilities and more support. We need time to rest and time to consider how to tend to ourselves in our lives without our babies. We also need to practice bearing our feelings, not just avoid them. What may seem like a time of extended vulnerability may actually be a time of gathering strength.
So whether we see it as a time to practice getting stronger, a meditation or just taking a knee in respect for the part of us that is gone, we may need to find a way to pause and be with ourselves for a bit. We may even need to lie down and let the ground hold us as we practice just being. We may need to have times where we see former parts of ourselves die just a little and witness the passing before considering the next part of life.
“Family isn’t something that’s supposed to be static, or set. People marry in, divorce out. They’re born, they die. It’s always evolving, turning into something else.” Sarah Dessen, Lock and Key
“You can kiss your family and friends good-bye and put miles between you, but at the same time you carry them with you in your heart, your mind, your stomach, because you do not just live in a world but a world lives in you.” Frederick Buechner
Pregnancy’s ineluctably relational nature means that once it begins, it can never be completely negated… In any case, in any outcome, there is a relationship the woman has to do something with– mourn it, celebrate it, try to forget it, dismiss it, accept its loss. Daphne de Marneffe, Maternal Desire: On Children Love and the Inner Life
Family trees are overrated. That’s my opinion about the traditional ones anyway– the kind that kids are asked to do in school and the ones touted on ancestry websites. I get that they can be useful for teaching us something about where we come from and some of the characters in our family history. I understand that the information may be rather poignant or interesting (e.g. my first relative to enter this country was a stowaway on a ship– I love to travel on the cheap– any meaningful connection there?). But when the background of our clan is drawn up in terms of births, deaths, marriage and divorce only, it seems to me to be a skeleton– with some bones missing– view of a family. There’s just a whole lot that remains unseen.
Maybe you were raised by your Aunt Fanny or your grandparents. Maybe your parents forgot to get married or divorced. Or maybe your parents couldn’t get married or you were conceived with the help of what psychologist Dianne Ehrensaft terms a “birth other” (donor or surrogate) or have more or less than two parents who are raised you. The authorities who track the comings and goings of our lives are likely to miss such details. The lines running between our hearts and those we love may be very different than what shows up on a traditional family tree.
Historically and today, a baby loss may not be noted in a family record. Depending on whether the loss was during or after pregnancy, whether a birth or death certificate was made and who all was told, it may be an off the books experience. The fact that it may go undeclared and unwritten matches the ambiguous quality that can be a part of baby loss.
Not every pregnancy loss is seen as a loss of a person and it doesn’t need to be. We each have an individual understanding of our loss and may hold it as more of a loss of a dream or a version of one’s future. Even infant loss, depending on cultural and individual differences, may be viewed as something less than would the loss of another family member.
But even when the occurrence is documented minimally or not at all, a baby loss still shakes the family tree.
Perinatal loss is often felt as a family crisis at multiple levels. When a baby is expected or recently arrived, new tendrils of feelings come out of family members. The feelings may be simply love or something more complicated, but a course is charted for a relationship and its accompanying emotions.
When a baby dies, everything changes. After excitement, planning and attachment, there is a space. There may be very traumatic memories and almost certainly very sad ones. There is hurt and shadow hanging over at least some of the family members. There may be a name that will rarely be said, family pictures that will have someone missing and ongoing relationships that will not develop.
All the hopes and dreams of one part of the family story are altered. The identities of mother, grandmother, uncle, etc are questioned or shifted as family members consider how a place will or will not be held for the baby in the family history. The ambiguity of a relationship starting and not continuing in a tangible manner may lead people to minimize the experience, but that won’t make it a non-event. The loss to the family at large of a baby may be a confusing experience to articulate, but that doesn’t diminish the reverberations.
One consequence of a baby loss might be the test of our family member’s emotional responses in time of crisis. We often have years or decades between big moments of birth and death, coming and going, beginnings and endings in a family. Baby loss may trigger a sense of fast forwarding through these types of experiences. We attach and change, grieve and stumble, show up for each other or don’t.
As with any loss in the family, we also run the experiment of testing out whether our mourning can be done while we stay connected to life and to each other. We find out if we can be open to joy again as we still grieve. Expecting and losing a baby makes us trot our heart quickly through its paces of the highs and lows of love.
At the end of it all, as the old bumper sticker tells us, love is what makes a family. All of this family drama may include family of various descriptions. The VIP list in your heart and star placement on your family tree can always include a list of less than traditional players. It could include the teacher who changed your life, your AA sponsor or your best friend.
Your family tree may also proudly feature someone you never met. It may include someone who changed you both physically and emotionally and taught you about attachment, priorities and loss. It may be the person whose presence made you both a mother and a bereaved person. It may be someone you never held, but who you will always hold close.
“I don’t even know what I would have wanted someone to say. Not: It will be better. Not: You don’t think you’ll live through this, but you will. Maybe: Tomorrow you will spontaneously combust. Tomorrow, finally, your misery will turn to wax and heat and you will burn and melt till nothing is left in your chair but a greasy, childless smudge. That might have comforted me.” Elizabeth McCracken, An Exact Replica of a Figment of My Imagination
I went through one of those trap door rabbit holes in cyber space the other day and ended up reading about the Temple at Burning Man. Burning Man, of course, is the yearly art festival in the Nevada desert that is famous for a number of things, including the practice of setting fire to many of the art pieces. My only experience at Burning Man was in 2014. There were a million bits of wonder and feeling that came up for me in my time there. It’s quite an event. Look at pictures from any year and you’ll get an idea of what I’m talking about.
A participant may see a giant Golden Dragon with beautiful people on board partying at sunrise, flying zoetrope monkeys powered by drumming and a Barbie Death Camp. In this gift economy, someone may offer to write the theme song for your life or make a sundae on your tongue. You may get stuck in a sandstorm which leaves you stranded and disoriented and when it clears, a stranger may come along and offer you the best grilled cheese sandwich you’ve ever had– it’s kind of like that. And, because someone else is bound to tell you if I don’t, I should say that there are a fair amount of nude people. Also, it’s hot, really hot. Did I mention that it takes place in a desert?
Since 2000, one of the traditions at Burning Man has been the construction of a temple. Various architects, the most well-known being David Best, have designed a different wooden creation every year. Like may things at Burning Man, it is done on a grand scale. The physical construction begins off site months before the event and continues on site in the weeks leading up to the festival. Built to last only a brief time in an intense environment, every year the temple seems to be an extremely well thought out, intricate and gorgeous structure.
During the festival, the Temple is a gathering place of memory and reflection. People bring pictures, personal belongings, and letters. Pens and markers are available for writing on the wood. It gets filled up with the space between the living and the dead. It is a place of feeling and remembrance and is often packed with people walking, sitting, and lying down inside the walls. During the week of the festival, it feels like an inviolate and solemn place. And on the last night of the event, it burns.
Like other burns, it is done at a specific time, after it is emptied out and sealed up, with tens of thousands watching from a safe distance, feeling whatever they are going to feel. People talk about it as a release, a spiritual catharsis. It’s whatever you need it to be.
The McCracken quote above is from a book written about her experience of having a stillborn son. This passage made me think about Burning Man and the Temple. At first I wondered what about being told that you will be melted down could be comforting. After baby loss, isn’t a person already so hurt and distressed that losing more of themselves is what they fear most?
But after considering McCracken’s words, I wonder if she is saying simply that it would take a dramatic, destroying image to resonate with what she felt inside. Maybe she was responding to the knowledge that her pain wasn’t a brief illness that she would temporarily dip in and out of, but rather a loss that would take much more of her than that. Maybe only a gutted, burnt out metaphor was a match for what she felt and the place she would be coming from to face whatever was next. Maybe what she could identify with most was the idea of burning through every feeling and being taken down to almost nothing.
I wouldn’t confuse this with hopelessness. A forest cleared by fire will have a next stage of growth. A person who hurts to his or her core will still eventually let in new bits of life. And every year a desolate playa in Nevada turns into a giant, vibrant city.
The time I went to Burning Man, the temple was filled with pictures, handwritten letters, pieces of cloth, at least one pine cone and some stuffed animals. Robin Williams had just died, and there were several areas with his picture and notes to and about him. There were goodbyes written on the walls to every kind of loved one. There were memorials to pets. There were pictures of moms, dads, grandparents and the kind of friends that are family.
There were small items meant for newborns. There were photographs of and names of babies, notes to and about the ones who didn’t make it into this world as well as infants who were no longer living.
On the last night, I pedaled to the temple burn at sunset along with others on foot or on bike–past the ashes from another burn, then a metal octopus, a miniature log cabin on wheels, a big group of people in sailor suits, a line of giant teapots strung together and some people sitting inside a neon star.
When I saw the temple burn, the first change I noticed was a soft orange glow inside, then flames outside. The smoke moved softly and adamantly in one direction. The moon looked tiny. Everything seemed to slow while a small corner of the desert burned down into something else.
“It was the best of times, it was the worst of times…” Charles Dickens, A Tale of Two Cities
“I’m sorry, Gemma. But we can’t live in the light all of the time. You have to take whatever light you can hold into the dark with you.” Libba Bray, A Great and Terrible Beauty
Last weekend I stayed at an off the grid hot springs establishment where the bathrooms were labeled “yin” and “yang”. I’m used to figuring out that I’m supposed to head for doors marked “Damas” or “Cowgirls” etc., but this was a nice spin on the concept. It turns out that sometimes a trip to the toilet in a beautiful and quirky location is a good opportunity to consider the relationship between the opposing sides of life.
Wikipedia gives us this: In Chinese philosophy yin and yang (also yin-yang or yin yang, yīnyáng “dark—bright”) describes how opposite or contrary forces are actually complementary, interconnected, and interdependent in the natural world, and how they give rise to each other as they interrelate to one another. Sometimes people talk about the two sides as male and female, fire and water, passive and active, moon and sun, etc. The symbol has, in the form of a dot, a little bit of the opposite color, reminding us that each side contains a bit of the other element.
The experience of expecting or having a baby and then losing that baby tends to give us a dizzying trip to both the light and dark side of life. It’s often a steep drop from one extreme to the other: joy-sadness, expecting-disbelief, hopeful-hopeless, assured-anxious, expansive-contracted, connecting-detaching, full-empty, beginning-ending. Certainly none of these feelings are unique to baby loss. But babies tend to bring out our strongest and most tender feelings, and the abrupt and dramatic shift related to attaching to them and losing them is particularly stunning.
The outlier moments in our life, those that are bigger– whether bright or dark– demand notice. They take our energy and attention and become landmarks in our memory. The two halves of the spinning, messy embrace we see in Yin and Yang symbol remind me of times when I have felt the opposing sides of my own life experience.
I have a memory of being five months pregnant on an Easter Sunday. I was lying on a lounge chair in the backyard of my then home feeling the sunshine on my skin and the movements of my baby inside me. At that moment everything felt connected and right.
I have memories of being in the hospital a couple of weeks later and feeling that I was losing more than I could handle. People mentioned how beautiful the weather was outside and I remember thinking that they must be living on another planet. I wondered if anything could feel OK again.
At the time, the two experiences seemed worlds apart. As I think about this now, it seems clear that it was two sides of me loving and losing someone dear to me. The memories now are held as interrelated and coexist as important part of my life.
When we are in a great place, it can help to remember a little about the other side and appreciate our time away from it. When in a tough place, it can help to remember the light of past and future, and that it’s as real as anything else. If we are in pain, it’s our time to breathe through the experience until we find another feeling. If we are in the best of times, it’s time to breathe it in, noticing the hell out of it because we will need some in reserve pretty soon.
Whether it is a time of celebrating or grieving, thriving or enduring, I think there is something to gain in being aware of what lies on the other side of the line (and the dot that is a little bit on our side). We can appreciate knowing there are limits to whatever we are feeling now, knowing at some point the game of tag will continue and the other side will be “it”. Being aware that there is a finite time when we’re in the worst of our pain makes it bearable. And remembering that our time on the sweet side is temporary can help us savor it a bit more.
“The past is never dead. It’s not even past.” — William Faulkner, Requiem for a Nun
“She took a step and didn’t want to take any more, but she did.”— Markus Zusak, The Book Thief
“It’s neither kind nor effective to bitch-slap yourself into a better way of living.”— Your Exquisite Self-Care Inventory –101 Ways to Love Yourself More Deeply from Life After Tampons Blog by Jennifer Boykin
About a decade ago, there was a morning where I found myself eating breakfast in a hotel ballroom in another part of the country while a speaker (whose name I can’t remember) stood at the podium and talked about exquisite self care. The audience for the conference was a mix of people who had experienced perinatal loss and those whose work focused on perinatal bereavement. The woman doing the keynote that morning promoted the idea of exquisite self care as necessary for coping with grief and as well as for working with those who are grieving. She spoke about accepting and validating increased needs after a significant loss, and suggested creative and heartfelt ways to increase both practical and emotional support in one’s life.
I remember liking the word exquisite being used in this way– it added an element of relief to picture something of beauty, sensitivity and discrimination associated with what can feel like the belly crawling time of coping with acute grief. I understood her premise to be that individuals can cultivate self-compassion and enlist it, along with other types of efforts, to stay afloat in the world. It expanded my idea of the long hard slog people can have with the basics of eating, sleeping, safety and support after a loss. The word exquisite made me consider space and grace seeping into the herculean efforts of those who are in crisis and who are attempting to get through the next moment or hour.
Exquisite self care also seems appropriate for attending to another need after baby loss, one that goes beyond the usual understanding of basic practical and emotional requirements. It’s something less tangible and probably presents uniquely to each person. I’m talking about how we care for the bits of involuntary interior remodeling of the self that happen after we lose our babies.
This remodeling may be big or small, have short or long term aspects and, sort of like the Winchester Mystery House, it may be ongoing. For some of us, we may feel a permanent change in the internal landscape. My own experience has been feeling that something was dug out inside me as a result of my losses and that the space has undergone many shifts. Early on, it was more like a situation room. Everything inside vibrated with intense feelings while plans were made, scrapped, and made again to deal with the circumstances at hand.
Now I think it’s more a room of requirement, a la the one found in Harry Potter’s Hogwarts. It fits the needs I have for it at different times. Sometimes it is a place where I meet others to hear and feel their stories and sometimes it is a place for me to sit with my own memories. It is simultaneously a space and an addition. It is a part of me shaped by a painful and significant part of my history.
Exquisite self care sounds like an appropriate way to tend to such a place. Some things are forever removed from the interior self post loss and some things should never be removed. It is a place deserving of respectful tending, which means not overlooking it, fearing it or forcefully messing with it. We look after it by gently looking inward. Sometimes we may nod to the space, make a quick round with a dust rag or take a minute to notice the current furnishings. Maybe other times we pull up a chair and sit awhile because something leads us there and it’s a fine place to visit.
Either way, a bit of tenderness and awe would not be out of line here. We can show some deference for our selves shaped, but not taken down by grief. We can remember our dreams and our babies and respect that we loved them and ourselves enough to make room for them.
“I think about calling a friend sometimes, but I’m not sure anyone wants to spend time with me right now.”
“My coworkers look nervous when they ask me how I’m doing.”
“My family was really supportive at the beginning, but now they don’t even mention the baby and what happened.”
Humans are social creatures. We need each other. We mingle in all kinds of family and work groups and have developed complex interdependent systems to take care of each other when it comes to food, healthcare, entertainment, safety and emotional well-being. Just to get through a routine day, we usually require quite a bit of assistance from other people. We need them to drive the bus to work, sell us coffee and go for a walk with us at lunchtime to discuss the new Star Wars film. We depend on family, friends and professionals to help us stay upright and healthy in the world.
During pregnancy, and in anticipation of birth and the early time with a baby, we generally receive an even higher than normal amount of practical and emotional help from others. This often means more contact and attention from loved ones as well as the healthcare system of doctors, midwives, doulas, etc. People often meet us with high energy and open hearts during the exciting time of transitioning to becoming parents or extending a family.
When something goes wrong, however, the team of friends, family and professionals that was very well prepared for a living baby may not be as up to the task of coping with a loss. People may be awkward, show up at first and then back away pretty quickly or they may have trouble offering anything at all.
There are probably lots of reasons for this. We don’t expect the early end of a pregnancy or death of a baby and each person struggles with his or her own reactions to such events. We also live in a society that tends to minimize grief in general and baby loss in particular. There is discomfort and confusion about the significance of losing someone who was not really well known to the world. Those who were eager to help with a new life may not be ready to help with pain and emptiness. This can be challenging on both sides, meaning that it can be tough to both give and receive support after baby loss.
Challenges Related to Providing Support
Because of anxiety, mistaken assumptions or just feeling at a loss, it can be hard for those in a position to help after loss to do so effectively. Family and friends might wait for cues that they either don’t see or misread. Medical providers may also feel challenged in this situation. They are not always comfortable with the shift in focus from more routine pregnancy and baby care to the raw feelings and needs displayed by someone experiencing perinatal bereavement.
The discomfort from members of the potential support system is often relayed through unclear or unhelpful communication. “Let me know if you need anything” can feel like a pretty vague statement to someone. If “I should wait for her to bring it up” is used as a strategy, it may translate to a grieving person as indifference.
Euphemisms can also be less than helpful during this time. Euphemisms hide or distort direct meaning and in some situations can make information softer or easier to hear while still conveying something useful. When we read a sign that says “please do not throw feminine products in the toilet”, we understand the underlying message and that it’s not a concern about our pitching lipstick or Adele CDs into the loo. But when, after a heartbreaking loss, people speak to us about “letting go”, “moving on” or “closure”, what does that really mean? Implying that there will be an end to feelings about the permanent loss of a loved one can be confusing and painful to someone in the throes of grief. It might just make a person feel misunderstood or alone.
Challenges Related to Receiving Support
As far as making the effort to reach out for help or accepting support, that can be tough too. Most of us are horrified by the thought of being the neon lit person of the recent tragedy. It’s tough to be that person in the social circle, even as a temporary identity. It’s one of the many things you probably wish wasn’t happening right now.
Since the emotional and physical ramifications of baby loss are not often discussed, you may not feel socially entitled to being seen and treated as a bereaved person. People in your situation often have trouble letting others know their feelings or needs. Sometimes, as often happens with a miscarriage or termination due to a devastating medical diagnosis, they may not even let others know that it happened.
Increasing Your Support
Losing a baby means losing someone dear to you, often in an unexpected and traumatic manner. When this happens to you, it’s a high needs time. Maybe you want to talk and maybe you don’t, but you need something. Maybe it’s someone to help you deal with your insurance paperwork, walk your dog, take you to your appointments, bring you groceries or sit with you in silence. Maybe you don’t know what you need, but that doesn’t make you less needy. You’re hurting and it’s your time to lean on others a bit.
If someone is offering help, take him or her up on it. If it seems extra hard, start with something very small. If someone has to be told that you need them, consider doing so. Sometimes people appreciate the information and can step up when prompted. Many people are anxious and uncertain about how to be helpful or if their help is even welcome. Letting them know what you need may make them feel more comfortable as you’ve given them the option of directing their energy in a useful manner.
When your medical providers are not able to give you what you need at this time, consider giving them feedback and/or switching to someone else for your care. At a time when so much is out of your control, remember that you still have choices in this area. Because it can be so hard to process information at this time, and the information you have may be incomplete, you may also want more than one medical professional to help you understand what happened and what it may mean for your future.
If a friend or family in your support system is awkward or insensitive in their help-giving, consider trying to forgive them. Take a break from them if you need to, and try not to make any long term assumptions about the relationship. None of you are in the best place right now.
Maybe you will want to break ties or change your relationships with someone based on their current behavior, but it may be helpful to wait before assuming estrangement with a friend or family member. I recently found out that a decades long rift between two now deceased members of my family was caused by “something to do with pork chops”. It’s hard for me to believe that this fight and the feelings of upset needed to result in the extended separation and tension in the family. Although it can be very hard to forgive emotional injuries, whatever the cause, it may be worth it because it may help you feel better and more peaceful in the long run.
Ask those who are closest to you and who are the most competent to engage others further out in your support network. If no one is local, try using the phone or internet. If you really can’t find someone to help you in the moment, remind yourself that you deserve it anyway and keep looking. As Les Brown said, “Ask for help, not because you’re weak, but because you want to remain strong.”