Not Gonna Panic (Part 1)

Something happened to me, physically, in the wake of holding my dead daughter, Roxy. I felt it happen that day, walking from the room where she was born back to our private hospital room where our family waited, wailing. See, one of the perks of having your baby die is that you get your own private room for a few days. They mark the door with a purple flower, which I assume is to warn nurses not to be cheery and congratulatory. I have wanted to stomp the life out of every purple flower since.

Where was I? Oh yes, the hallway walk. It may have been 20 feet, but in my memory it’s 3 football fields. I remember every zombie step, knowing that there was more horror fighting to get into me than could fit, so my veins felt crowded and noisy with electric, terrible blood. A time-release panic valve was installing itself, and I could feel it. A panic payment plan was set up inside of me. I think I know now, 5 plus years later, that I will not live long enough to pay the debt.

I fell through that day without completely dying of it, but I was different. Not just emotionally. Not just psychologically. I was different, physically. I started having panic attacks within the week. I assumed I was having heart attacks. I was certain I was dying. I went to the ER. I went to the clinic. I went through a battery of tests, wore a heart monitor for a month, etc. “No,” the doctor said, “your heart is fine. It may be post traumatic stress.” I’ve been on anti-anxiety meds for half a decade now. The panic attacks are fewer, but they still come. They can be triggered by adrenaline of any kind (roller coasters, sick kids, playing basketball, etc.) I’m a lifer, most likely. This song is about having one of these attacks. It is the self-talk. It is the darting, random thoughts as I try to keep it together long enough to escape my place of work before I collapse.

Whatever is wrong with you goes all the way
Through your awful last name in the dark
I wonder where that dog will run to?
I wonder how long that dog will run?
You can keep your hand to your chest
You can worship by the elevator, leaving
Calm down
Beating beating beating beating
A mannequin in a dress, an overpass
I hope I never get used to losing you
The sound of a car on a bridge
And the things you can’t take back
No matter how long you live
Calm down
Beating beating beating beating
I’m not gonna panic
I’m not gonna panic
I’m not gonna panic

Since your loss, does anxiety overwhelm you? How do you handle it?

perspective

I am so honored to be welcoming Erica from I Lost a World as a guest writer today. Erica's son Teddy was diagnosed with a congenital diaphragmatic hernia in utero. He was born August 15, 2008, and gone the next day. Erica has shared her beautiful writing and perspective at Glow before, and we are so glad she is back. --Angie

Perspective.

I hate it, I really do.

Something bad happens, something that would rock another person to their foundations, and my response, so often now, is the trite-sounding, “Well, at least no one is dead.” What a cliché.

And I mean it. I really do look at the world this way, and I think that the common perception is that this is a gift, to have your life events bar set so low, to be able to find comfort in a baseline of the people you love being alive. People, the people I think about as regular people, watch sad movies in order to glimpse this perspective for a few minutes, a couple of hours. They talk about remembering and recognizing their priorities.

I am jealous because I used to do that, too. Before I met this tiny little person, so alive and vital and perfect except for a small hole in his diaphragm that meant his lungs couldn’t develop. Before we tried everything we could think of to save him and before we saw that it hadn’t been enough. Before I held him in my arms and watched him try and fail to breathe.

And now, for the rest of my life, I have been cursed with this perspective.

photo by kalyan02.

My favorite Terry Pratchett quote, from his book The Truth, is this:

“There are, it has been said, two types of people in the world. There are those who, when presented with a glass that is exactly half-full, say: this glass is half full. And then there are those who say: this glass is half-empty. The world BELONGS, however, to those who can look at the glass and say: EXCUSE ME? THIS is my glass? I don't THINK so. MY glass was full! AND it was a bigger glass!”

I often wish I were better at living that way, at demanding more from others and from myself, at being the fearlessly squeaky wheel. Sometimes I fantasize about being braver and insisting on getting my share. But one of the things that can happen when your baby dies – your baby, that entire world’s worth of love and possibility – is that you go quiet. You try to fly under the radar of luck or fate or God or the devil or the Universe. You hold what you love extra tightly and wish you could borrow Harry Potter’s invisibility cloak as you worry about the next disaster, that other shoe, the next “character building” experience, that next test of faith or fortitude. I find it hard to squeak, even when I should.

A curse, I tell you.

And yet, not entirely. I wouldn’t have given up any of my time with Teddy, not even if it meant I could get rid of this perspective. Ever since Teddy’s death, I’ve been longing for my old stories – stories of home and safety and knowing my place in the world. I enjoyed living those stories, and my new stories are still uncomfortable and frightening. But I know that when I am afraid to look through the lenses of my new perspective, my stories are stale and trite and unsatisfying. Which is worse, somehow, than uncomfortable or frightening.

My perspective has changed and this has changed me. I see death around corners and feel ghosts in summer breezes and when bad things happen, I say, “At least we’re alive,” and mean it even though I will never be able to say “things work out for the best” again. I can say “I’ll miss you forever, Teddy,” instead, and “I’ll want you back forever,” too.  I can craft different stories from that place – a bleak place but an honest and sometimes strangely beautiful one.

How have your perspective and stories changed? Do you think that your life is different because you are afraid to draw attention to yourself by demanding more? Do you see your changed perspective as a gift or a curse, or both? How so?

This time, again

Those five weeks between when we found out he was sick and when he died exist outside of time.  They accordion out behind me as one infinitely long moment and then compress back to simply Before George and After George, the contents reduced to the width of a single piece of paper.  I alternate between being surrounded by memories, smells, tastes which bring me back to those weeks and real disbelief that The Horrible Thing actually happened at all.  

The more time that passes the more I seem to have difficulty grasping the core of what his death has really meant.  I tell myself that I can't regret what happened in the past because my present is filled with love for my daughter, who in a very honest sense only exists because her brother doesn't.  I fortify myself against the reality of his death rationalization by rationalization.   I am a master at trying to soften the edges of his death.

Then March comes around the corner, always unexpectedly, to knock the breath out of me.  The ether of emotions that normally fog my brain crystalize and it is all suddenly so simple again.  I gave birth to a baby in the cold sterility of a surgical suite.  I held his small sick and dying body, kissed his head, whispering to him I loved him and that I wished he could stay.  Then I simply waited for his tired heart to stop its battle to keep beating.  In March I can distill all the regrets and justifications and apologetics that I conjure up during the other eleven months of the year into a simple elixer of love and heartbreak.  

I am a mother to two children.  One who lives and thrives: a marvel in front of my eyes.  The other dead and gone: a shadow in the periphery of my vision.  But for a few weeks in March, when the world around me is waking up from its wintry slumber, that shadow feels a bit more substantive.  Almost as if I can reach out and hold him again, kiss his head, whisper him I love him, and that I wish he could have stayed.  

 

Do you rationalize the death of your baby to ease your pain?  When the anniversary of the death of your child approaches does it change your perspective on the past or make you feel closer to the one you lost?  How do you feel (or think you will feel) about milestones or anniversaries?  Are they intensely personal events or do you feel the need to share those important dates with people in your life?

circle time

It occurred to me later, like days later, that in that room we were the newbies. Going into the week of A's sixth anniversary on the Jewish calendar, and ten days short of the same date by Gregorian calendar, we were the newbies. Or, perhaps, in that room we were all veterans, and it didn't matter when exactly each of us started. Only it did, a little.

The woman who planned and organized the whole thing, that day she was ten years and a day on from the day her nine year old died in his sleep. To the right of her-- a woman whose 13 year old died close to 50 years ago. Two brain tumors in the room, a few cancers, three babies, a rocket, and a seven year old who ran onto the ice to try to save a dog. He didn't have boots. That was 40 plus years ago.

A Gathering to Remember, it was called. Our two rabbis and our cantor, he of the literally award-winning voice, closed the circle that otherwise contained bereaved parents, grandparents, and a sister. Each of us had the opportunity to speak in turn, though some chose to let their spouse do all the talking (like, ahem, a certain male of the species residing in my own house).

Because we sat down to the left of the organizer, we ended up being the last to speak. Which, I think, turned out to be a blessing of a sort. I wanted to be there, to sit in the room with these people, most of whom I didn't know before that day. But I didn't prepare anything specific to say, and I didn't bring anything ahead of time. I didn't even know what I would say beyond the crystallized truth of our existence-- my son died, I love him, I miss him, and somehow my crazy busy full and overflowing life is not complete without him. Ten seconds max. Had my turn been early on, that's probably all I would've had to say. Because, you know? As is, I spent most of the time listening. Parents and grandparents, 10 years out, 11, 50, 50 again, 15, 40-ish.

Before we started, a younger woman came up to one of the rabbis, saying she was just here to support "her," and that she'd sit in the corner. Oh, no, please sit with us, said the rabbi, my rabbi, who came to my hospital room and officiated at the funeral. "Her" turned out to be her mother, and the mother of that seven year old boy who ran onto the ice without his winter boots. When it came her turn to speak, the mother struggled, cried, pulled out the picture, and struggled some more. The daughter offered to speak in her stead, from a sibling's perspective, but the mother pushed through, and got her story out, disjointed in pieces, but she did it. The daughter got to speak too, showing us a scar that is her very own tangible reminder that her brother was actually here, and reminiscing about a family trip chock full of good memories that they got to take before her brother died.

Would I ever forget the date my son died? The day he was born? I'd think that I could never forget the date if I still had the mind to remember A at all (or, you know, anyone else-- my grandmother's dementia taunts me from afar as a pretty terrible way to go). But this boy's mother forgot. She said it happened in January. December, the daughter gently corrected. And yet she fought to be the one to tell his story. And yet, listening to her talk about it, that slip-up seemed so very minor. In fact, except for seeing an old woman in front of me, except for her telling us how long ago this all happened, from her voice, from the urgency in it, from the burning love and yearning, you'd think it just happened a year or two back.

When our turn came, I ended up thanking the group and talking about how it turns out I needed to hear them all. Because my ten second summary, it's all true. But so is the perception many of us share that the outside world is rather impatient with and rather forgetful of grief. And sometimes I start to wonder whether my own gut feeling, that this grief is not something I will ever forget or get over, but something I slowly get better at living with, whether this way of looking at things is not right, whether we should, at some point, just be fine already. I am, though. I am fine. And yet, I am also grieving. And listening to everyone in the group, everyone who is a bit ahead of us, and everyone who is waaaay ahead, in the end that felt like a permission slip-- yes, grief is like that, and it is ok to sit with it, now and whenever. Grief is like this because love is like this, and in the end it is still very simple-- we love them, and they are dead.

I finished by talking about the quote I noticed in the new High Holidays prayer book our synagogue started using recently. It was embedded in one of the notes in the margin that are on virtually every page of this very new prayer book, and it hit me so much that I had to come back later with my phone and take a picture of it. I've had the quote on my phone ever since I did that in September, and that morning I pulled out the phone and scrolled through the gallery back to the quote.

It is used in the book to argue that a certain passage should not be seen as a request for restoration of what once was, but rather as a plea for resilience. The quote is from Elie Wiesel, who really does know from resilience. "God gave Adam a secret--" he says, "and that secret was not how to begin, but how to begin again."

Do you ever feel self-conscious about your grief or its expression? Have you found fellowship with others in a different kind of a grief boat? Those on a different timeline? Have you had unexpectedly validating or unexpectedly invalidating grief experiences?

Missing One

As strange as it may sound, I MISS the wincing sting I felt in the first couple of years after losing Roxy. A wincing that brought the end to so much of what I had been. It twisted my back and made me old. It made me permanently nervous. And yet, somehow, over 5 years out, I miss the immediacy of that pain.

Sometimes I search through my emails and my journals and my songs just to reunite with the horrifying disbelief of our loss. During those first couple of years, I couldn’t WAIT to escape it. I counted days away from Roxy’s death. Yet now, somehow, sometimes, I want to go back.

I recently went on an email spelunking mission, looking through my archives, searching “song” and “Roxy” and seeing what came up. I wanted to remember the songs that saved me or destroyed me in the aftermath of losing our daughter.  I came across this exchange I had with my good friend Faith about a song that hit me hard at the time, and it just washed me out to the Roxy Sea, an ocean of beautiful grief… and it is beautiful, my grief. It IS my Roxy. It’s all I got to keep.

I’m told “Missing One” by Bonnie Prince Billy was written about his father, but it sure hit home for me that night. Here is a portion of my exchange with Faith as well as the song itself.

KENNY: “…it’s been rough this month… just feeling the day come around the corner.  Last night I had practice in Indy and I was driving home and I was just flooded with it all… Roxy’s face and skin and the nightmare after they took her away from us and out of our room for good.  I was listening to the new Bonnie Prince Billy, but just lost in my own sadness, kind of allowing myself to go through it again (I rarely do that, but sometimes it just needs to be done)… suddenly this song comes on:  Missing One (god have you heard it?).

I know that missing you has just begun
There’s years to come
And trying to sleep tonight next to your kin
Is fully lovely as I’ve ever been
But I wouldn’t trade my life for someone’s millions
And I know you left for a reason
And the trees and flowers and creeks and rocks
Hold your face for every season
I know I will continue to try and please you
And even in some ways,
To try and be you
But also my fulfillment will be to do what I do
As you taught me to
I know that missing you has just begun
Love me family
And just sleep to all of us

I felt like it had sprung right from my sad heart right that moment, sung to Roxy.  The moon was a little more than half full but really lit up the whole sky.  I almost disappeared completely into it all.  I listened to the song over and over again.  I tried to invite the tears to come, but they wouldn’t.  I really wanted to feel that release.  still, it was magical, sad, and somehow important.”

FAITH: “Oh man. Those lyrics do seem sent straight to you… I haven’t heard the song, but being a Bonnie Prince Billy fan, I’m guessing it’s not up-tempo.

I can really imagine that scene – the highway, the song, the moon, the memories. It’s a beautiful image, heartbreaking as it is. I think Will Oldham should list his occupation on his tax form as “professional tearjerker.” The tears will return when they need to, my dear friend, preferably when you’re not driving.”

It seems, even under a year away that I felt too disconnected from my pain. It has been more than 5 years now, and the tears still haven’t fully come. Or maybe they spilled backwards into my brain and blood. Or maybe the missing has just begun.

Do you ever feel too far away from your grief? Do you try to keep it close? If so, how?