balancing, act

I like Matthew Perry. Not, as many people of my generation might, because of his role on Friends, but rather because of his guest spots on The West Wing followed by his starring role in the sadly short-lived Studio 60 on the Sunset Strip. (If you love musical theater and good comedy, look up their second episode, The Cold Open. I still smile when I think of the number that is the namesake of the episode, the one they are working to the whole time. But maybe it's just me. Likely, even.) So it is not entirely surprising that even though I usually try to watch what I can in DVR delay so that I can fast forward all the commercials, I stopped and watched the ones NBC kept running for Perry's new show, Go On. The show premiers tonight, but the pilot episode has been sitting On Demand since Olympics, when they started running the relentless promotion.

Do I sound like the TV Guide up there? Sorry... I think I got that all out of my system now. So let's get on with the main event-- the show and what we think of it. Well, what I think of it for now. Though I am hoping that (provided my description doesn't make you want to destroy the TV rather than watch the show, which I hope it does not) you watch it at some point and chime in. Or vote early, vote often-- comment before you watch, comment after you watch. Heck, comment instead of watching.

Why, you ask, am I darkening your screen with a post about a TV show? For one, the main character, Perry's character, is grieving. We learn in the very first scene that his wife is dead and that he shows up back at work way before anyone is expecting him to be there. Shortly after that, he is told to get his loudly protesting self to group therapy. Grief sitcom, then? Why, yes, and I am not telling you this to forewarn you from ever going near the thing. Because when I began watching the pilot, I rather expected to end up disappointed if not outright hating the thing. What I got instead is a heaping bowl of recognition, with a side order of wait, are they going THERE? And yes, yes they did. As suggested by one of the promos you might or might not have seen, Perry's character really does stage a March Madness style head to head Pain Olympics tournament. No, really! What's even crazier, for me? It works.

If you know anything at all about the grieving me, you know that I hate Pain Olympics with a passion. In fact, I caught myself playing Reverse Pain Olympics. In the four plus years since I wrote that post, in this particular area of my world view, nothing changed. I still hate Pain Olympics, and I still think that nobody but each individual grieving person is allowed to say to themselves that it could have been worse. So how is it possible that given this world view, I am on board with the Go On's treatment of the subject?

I think that in a strange and completely unexpected way for me, what they do is actually affirming, not dismissive of each person's pain. First of all, they all agree. They all sign up, and they all accept the rules. Second, there seems to be an underlying and thick layer of good will. Those who fall in the earlier rounds are shown getting into the cheering on of their group mates. Even in "losing" a face-off, there can be recognition of the depth of pain. The character who is so distraught over the death of her partner that she can't pull out salient details to tell the story in brief to fit in the amount of time allotted is told that she is losing the bout "on technicality." That seems validating. And? they manage to do that without completely dismissing the dead pet character who "wins" on that selfsame technicality.

What was really profound to me, what sang to me with piercing clarity of a single string going on after all the rest of the instruments have faded, what I appreciated both as honest depiction and as a fearless move by the show's creators, were the brief vignettes of the characters in their own spaces, on their own time. I dare you to remain composed through the whole sequence, especially when they show us where the Pain Olympics winner's crown comes to rest. And may I remind you now that this is supposedly a half hour sitcom?  

So if, against my every intuition, this works on a sitcom, does it mean I just changed my mind about Pain Olympics in general? Does it mean I am about to offer sign ups for the blog cage tournament of doom? Hell, NO! What I now think is that the show creators have managed to find one of a fairly small set of circumstances where something like this might work. Which is why, I suppose, they are getting the big bucks.  I think that it works partially because the characters have suffered different losses, not all of them losses of people, and not even all of them losses of another being. As such, when they are showing off their wounds, they are presenting the general outlines of the wound, not measuring, if you will, the depth and circumference of the wound. In contrast, it seems to me that doing a thing like this in a community of people whose wounds are all the same general shape is a very bad idea. Mostly because comparing details of losses where the relationship between the lost and the bereaved is the same takes us perilously close to deciding whose lost loved one mattered more. And that is still something I can't abide.

The other reason why I think it works on the show, is that the "tournament" takes place within a defined period of time, in a small real-life community. In other words, it happens in defined space within a defined period of time. Live people interacting, in competitive spirit, yes, but also with compassion and humor and understanding, with other live people, most of whom they have known for some time. This is not something that is easy to ensure happening on the internet. People wonder by, reading the posts they stumble on. When we as readers react to an entry on a blog, something written in a particular time and influenced by particular events and emotions, perhaps even in response to particular events, for us what is said is very immediate, right now. But the person who said it may have changed their mind, may have even changed some as a person, and certainly may simply not be in a headspace to "go there," to engage the topic again. Which, if the post in question is of the Pain Olympics variety, might just leave a late comer reader feeling belittled in their loss instead of supported in good humor.

So I am still a firm "no" on unleashing Pain Olympics into the wild, but a cautious "yes, for now" on the new show. I hope, for their sake and for ours (because wouldn't it be nice to have a popular culture education on grief?) that they can sustain the tight-rope balancing act of being authentic and entertaining at the same time. And I really hope the weird guy's alone vignette doesn't mean he's a bereaved father. Not because we don't need to be represented, and not because bad things don't happen to weird people, but because if I had my druthers, I'd wish for us to be represented by someone painfully "normal" and average.

So what do you think? Have you seen the show? Will you? Are there other popular culture representations of grief in general or perinatal bereavement in particular that you find either particularly authentic or particularly offensively cartoonish?

lachrymatory

photo by Jenny Downing.

If I collected my tears in lachrymatory, placed them on dark wooden shelves, I would have a museum to missing you. Maybe no one would visit, but I would. Bottles of my weeping would line the walls, sun streaming through the windows. Fancy blown glass filled with oceans of grief, the tear bottles would refract the light, make prisms on the walls. Small beautiful points of your lack of being all around me, in every color except black, reminding me where you are not.

I quote the Bible to defend my mania. "You have noted my grief; store my tears in your flask. Are they not recorded in your book?"* David asks it of God on my behalf. Grief is sacred and should be hunted and gathered from all the dusty corners of you. Work it out of your muscles, squeeze it out of your eyes, dissect each event to find it, then catch the grief tears in delicate bottles with pewter stoppers. The Ancient Romans collected tears in jars, buried them with the dead. The Victorians poured them on the graves after their grief period ended. But I covet the tears I shed for you. Grief opened my flood gates.

Before you died, I only cried in anger. Those tears were more bitter than salty and I hated the weakness it revealed about me. When I was a girl, my father mocked crying. Even when I was very tiny, he would stand in front of me, and pretend to cry. "WAH WAH WAH. I'm so sad." He would laugh. Shamed, I would hide my face in terrible humiliation until I couldn't cry anymore. 

After you died, I could not control my tears. I dreamed about oceans and seas and salt water lakes. I searched for you in the water. One minute, I was holding you, and then I somehow let go. I could not find you in the waves. I'd flail my arms and search the blackness below me. You were gone. I lost you. (This was a nightmare.) I lost you again. I felt the drowning overcome me too, and woke in a panic, knowing it was my tears covering my face. I cried at night, and in the morning again. I cried all day. I cried at all emotion--sadness and joy in equal measures.

I appreciated that gift you gave me--the gift of crying. Now, I can cry when it is appropriate. I celebrate it, pour my tears out and let people see them. It is why I make the tears into art and history, a monument to my humanity, because without tears, I felt less than human.

The tears transmute sadness into adoration, emptiness into substance, absence into a being. It is the alchemy of grief. The hole that formed in the center of me when you died was the physical manifestation of absence. The hole itself became liquid, and flowed out of me, like blood. Tears are the blood of a soul wound. Keening is the physical work of missing and love. I put the curved bottle to my eyes, allow the tears to run into it. I wear the lachrymatory around my neck on a long black ribbon, to catch the sorrow that might overcome me in the market.

There is a point when you are supposed to pour the tears out, Daughter. Soak them into the grave, so you can taste my missing and know that it has the same flavor as love. But you are daughter-ash, and besides, tears are all I have of you.

Tears and ash and the memory of not being able to cry.

* Psalm 56:8 translation from the Oxford Study Bible, Oxford University Press, 1992.

What did crying mean to you before your child or children's death? What does it mean now? Were you comfortable crying in front of others? Alone? How has grief changed your ability to express your emotions?

equations

This month's guest writer D. describes herself this way, "I fit into a unique niche that is becoming more prevalent; I knew my baby would die before she was born.  When I was twenty-three weeks pregnant, she was diagnosed with Trisomy 13 and we were told she may be stillborn or live minutes, hours, or the average of 2.5 days which is exactly what she gave us." D. blogs about raising her toddler daughter, grieving her second daughter, and the life that occurs in between at Still Playing School. Please welcome D. and join the conversation. --Angie

As we anticipated our second daughter's death and soon after we lost her, other parents would approach me with lowered eyes to start a conversation about loss by saying, "It's not anything like what you've been through, but we had an early miscarriage..."

My response before they can share the intimate and welcomed details about their child is to explain that there need not be any quantifiers.  This is your baby who you can't have with you each day.  It's a loss, a death, someone to grieve, whether you named, held, nursed your baby or not.

We learned when we were five months pregnant that Violet wouldn't live long after she was born, if she was born alive at all. Through the power of the internet, I found another mother 5,000 miles away whose beautiful daughter was also named Violet. Our Violets had the exact same rare chromosome abnormality diagnosis. Her Violet's middle name was also the same as my older daugther's first name. I got chills and emailed her.

While the coincidences that allowed me to reach out to her were uncanny, the differences were stark.  Her Violet had been still born.  They didn't learn of her diagnosis until after she was gone. Months later, when our Violet was born, she lived 2.5 days.

"I can't imagine knowing you were going to lose her," she sympathized.

"I can't imagine not knowing," I replied.

When we received Violet's diagnosis, we stopped the typical preparations, which was so unnatural.  My hormones urged me to buy diapers, set out the bassinet, and wash baby clothes as my belly swelled with her.  Yet we prepared for her arrival in other ways, meeting with funeral directors, gathering mementos to create, and planning with the palliative care team at our hospital.

We stopped decorating a nursery.

My friend returned to a ready and waiting home where her child would never sleep, to clothes she would never wear.  I cried when I saw the picture of her at her baby shower with pink clothes piled up beside her.

We hurt for own unique children, yet we mourned for each other as well and we felt those differences so deeply.

We might wonder if it is it better to have a fatal prenatal diagnosis or be caught off guard.

Is it more painful to lose a baby or a child at age 2, 5, 10?

Can we compare the shock of a car accident to the way your hope slowly trickles away as your child faces a terminal illness?

We can't create equations to compare the pain of losing a child.  There are no greater than or less than signs.  There are knowns and unknowns, but both have the same amount of pain attached to them.  The loss of a dream for your future, but also the loss of a very real person.

Did you know before your baby or babies were born that they may not live? Have you thought about whether you would have liked to know your child or children's fate if you didn't know, or not know, if you did? If you didn't know your child would die, would you have liked to know? Or if you knew, do you imagine whether it would have been easier not to know? Has the death of your child or children changed the way you will approach or have approached subsequent pregnancies in terms of prenatal testing? 

What They Say

Today's post isn't going to be lyrical or beautiful.  It's not going to uplift you or share a new perspective on the terrible tragedy of losing a baby.  And it also contains a fair bit of swearing so be forewarned.  

Today's post is about other people, the ones that have all their kids and don't know one single thing about how to talk to us, how to behave like a true friend, how to navigate in our dark depths and instead say incredibly stupid and insensitive things without using their heart or brain before opening their mouths.  So, let's start with my favorite:

"Well, everything happens for a reason."

What I want to say & do in reply:

Oh really?  It does?  So when I wind up my arm and clench it into a fist and punch that person directly in their disgusting, thoughtless mouth, I can just chalk it up to 'everything happening for a reason?'  What a relief!  I thought the Universe was just random, brutal and unforgiving, but here you are with your deep wisdom born of nothing, telling me I can do whatever the fuck I want because hey!  It all happens for a reason!  And the reason you are flat on your back from my knuckle sandwich is because you're an unthinking, insensitive ass.

What I say instead:

I disagree.  There could never be a good reason for my son dying.  What you are saying is very offensive to me, and I would appreciate it if you would keep those sentiments to yourself.  I know you're just trying to help, but it's not and you aren't and please, please stop. (or else, see above, I say with my eyes)

"Whatever doesn't kill you makes you stronger."

What I want to say:

Hmmm, let's see, no.  Not true.  Some things that don't kill you make you weak and fragile and bitter and sad.  Some things, like losing your child before they had a chance to make a breath or live a day, make you hollow and desolate and open your eyes to how bad life can get.  The strength I relied upon to live through that terrible experience came from who I was before he died.  His death did nothing but rip the naivety and innocence from my soul and lay the world bare in all its brutal viciousness.

What I say instead:

My son dying didn't make me stronger.  It made me nearly dead myself, and I'm not stronger for his death. I would have been made stronger by getting to be his father. What you are saying is painfully insensitive.  Please stop.

"At least you're young, you can have another."

What I want to say:

Wonderful!  Thank you so much for being a fucking idiot.  Because as you know all kids are replaceable. One breaks or dies, just go out and pick up another one.  How about this?  How about I take one of your four kids and raise it as mine?  After all, you've got plenty!  Spare one for someone who misplaced theirs when they fucking died.  How about it?  Since you're such a dumbass you will probably raise awful children anyway.

What I say instead:

Nothing.  I say nothing to those people.  I just look at them for a moment, shake my head and walk away.

"God works in mysterious ways."

What I want to say:

Fuck you.  Get out of my house.

What I say instead:

That's the stupidest thing I've ever heard.  If this is God's mysterious way of teaching me some kind of lesson, He/She/It can go fuck themselves.

"Is he your first?"

What I want to say:

Why do you want to know?  Or are you just asking things without thinking about it?  Do you really want to know about my first, about how he died?  About how we are still devastated by his absence?  About all our hopes for him and us dashed against the black shards of death?  Or are you just some blissfully ignorant stranger who can't keep their mouth shut and don't really give one fuck about us at all?  Ah, I thought so.

What I say instead:

No, our first son died due to complications during birth.  Then I just look at them while they crumble into despair and I think to myself be careful what you ask people, they just might tell you the truth.

~~~~~~~~~~~~~~

What insane, awful and horrific things have people said to you when they learn that your child died?  Let's rage on this together with the only people that know the truth and feel a little better by getting it all out for once.

a girl on the train

I am going to tell you this story. I don't think I ever told it before.

 photo by .aditya.

This was a few years ago, and I was less than a year from Lucia's death, and I was pregnant again and coming home from a midwife appointment in the city. I was on the train. I was listening to Stereolab, holding onto a pole, staring out the window at graffiti and darkness passing underneath the city.

Then I saw her waiting for the train. I couldn't believe it. She walked onto the car, brushed past me. I smelled her without being weird. And she even smelled like I thought she would. She had dark hair and eyes like my husband. I couldn't stop staring at her. She was Lucia grown up. I mean, I thought Lucia could look like her. Then I guess I thought she was Lucia. She must have been twenty-two, or so. She looked athletic with wide shoulders. She wore orange and red, and carried a small purse crossed over her chest, nothing ostentatious. She checked her iPhone and listened to music and tapped her toes. She wore cool, sensible shoes. Clogs. Just like me. And a scarf around her neck.

I whispered Lucia's name, but she didn't budge. I turned away now and again for the sake of convention. But I situated myself so I could mostly stare at her while pretending to look through her, like she was a specter, which of course, she was. And when the train pulled into my stop, I stayed on. I stayed on the train to see her longer. To look at her face. Praying she would smile, or talk. She was my baby, but she didn't know it. I wanted to see the way her neck eased into her shoulder. It was a very adult part of the body, and Lucia was never adult.

My God. Lucia will never be an adult.

The fact hits me like I fell in front of the train instead of rode in it. Lucia will never kiss a boy. She will never go to college, or eat a peach or dance in a rainstorm. I will never run into her randomly on the train where we can ride home together. I sometimes forget the details of all she will miss in my missing. She will not wear sensible shoes on a Tuesday, or crazy heels on a dark New Year's Eve. She will not hate basketball, or love it, even. Lucia is missing everything too. This body, this youth, this sexiness, this life we lead when we are young and death is something conquered, not an inevitable destination. Lucia never left the station.

I have nothing left of her. A wisp of hair, and grief. If there was a tea to take away grief, I wouldn't drink it. It is all I have of her--grief. An astrologer said I ride the train through two worlds--the living and the dead. I will never fit in either place. It is my destiny, he said. By the alignment of the stars, and my birth time, and this life, he said, Remember,  you made this soul contract. You picked your suffering. To me, he said, it looks like you picked the express train to spiritual growth, which means this is going to be a hard life.

I want this grief, this dis-ease of the heart. The grief is love, I think. It is the aching part of love. It is the sad part of love. But it is still love. Grief ties me to her. Aching. Pain. Suffering. They are her calls to me, and in that way, the pain is sweet and beautiful. She is just a name now. To my children. They stopped asking me about her weight, and what age she would be. She is Lucy, the very sad story I told them one afternoon. She is a butterfly now, and maybe a ladybug. She is the dedication of a song, or a picture, but not a real girl. She doesn't ride the train, and listen to music. She doesn't wear her hair down. Not like the other sisters.

This ride home felt like a journey between two worlds. I am Orpheus, walking again with a lyre into the underworld, and it invigorates me. It is not unlike going into 8th Street station. It smells of piss and cigarette smoke. There is a darkness in me. One I finally see. If I embrace it, the astrologer says, I will be happier. Even way back then, before I knew about the darkness in me, I paid the conductor, and followed the girl that could have been my daughter. My Lucia is dead. Her ashes are lumpy (so is my soul.) I probably wouldn't recognize my little girl walking and talking like a twenty year old. After all, I never saw her live. But that girl on the train was her for twelve minutes. And I loved her like my baby. The girl gets off the train and runs down the stairs. I watch her disappear behind a wall. Lucia is dead again.

I cross the platform to the train going back to my home. It's only two stops. The car is empty. It is hard not to cry, so I don't fight it.

Have you ever seen a stranger who reminds you of your child? Is there any adult in your life that reminds you of what your child could have been? Who is it? Do you want to be close to them, or far away? What parts of your child's adulthood do you miss most? 

The Ambassador

I had that call again.

A friend of a friend. Someone’s brother. A former colleague.

I shake my fist at Jimmy Stewart, because every time my phone rings an angel gets its wings, but it doesn’t seem so uplifting when the angel is a dead baby and you don’t believe in angels anyway.

I hope you don’t mind me getting in touch, I just didn’t know what to do and I thought of you immediately…

It reminds me that I am a denizen of a bruised nation with a missing population. We stand invisibly united under a knitted, never-used flag.

We did not choose to come here. We cannot leave, cannot flee. Yet we are dispersed. Grieving refugees. Missing a home we hardly built, earth we barely touched.

Another family crosses our border and we do not bring them casseroles. Or, y’know, we may bring them a casserole, but really we’re giving them some kind of painfully extended metaphor for what the next weeks/ months/ years will be. There is no silver lining, so perhaps a free casserole is the best we can hope for.

I feel like I should stand on something and proclaim:

Friends, Mourners, Undiscovered Countrymen…

But no one here wants a rousing speech, or maybe you do. I don’t know. We do not speak a common language, or share common customs. We hold different politics, different faiths, different aesthetics. We are connected, but only nominally. In reality, babylost covers an extraordinary diversity of experience. There are so many ways for babies to die. It still shocks me.

The friend of a friend. Someone’s brother. The former colleague.

I do not know what they want. I barely know what I want, truthfully. I want to make some weak joke: …something something DIPLOMATIC IMMUNITY, am I right folks??!!

I am an undeserving emissary, chosen by default.

Yet I am your Ambassador.

And you are mine.

Have you encounterd a babylost ambassador? Someone who had walked the path before you and helped you navigate your grief? Who are they and what did they do that helped?