The Cognitive Load of Grief

Ember, my daughter, is in an urn on my desk.

I spent the hours following her death pleading for appropriate medical care in an emergency department, as I nearly bled to death from a postpartum hemorrhage.

Many people in my life will not say her name, or even acknowledge that she existed. She died when I was 6 months pregnant. I used to think that the ambiguous nature of this loss--the death of a child whom no one got to meet or hold--explained this. I now know that this likely would have been the reaction no matter how old she had been.

Our culture is not comfortable with grief. Instead, we expect grieving people to bear the full burden of their grief alone, without reminding anyone else that grief exists, colors everything, and is the fate that eventually awaits us all. This collective ignoring builds an unbearable mental load for those of us trapped under an avalanche of grief.

The prospect of losing a child, losing a pregnancy, after all of the milestones have been passed, after you've picked out a crib and named your baby and felt her move, is terrifying to everyone who has ever been pregnant, or who hopes to one day be. Bystanders want to find a reason this happened. Surely I must have done something. Maybe I have bad genes I should have known about? Perhaps there were toxins in my diet? Did I take any drugs while I was pregnant? Is it possible I didn't get adequate medical care? Maybe I should have seen a different provider?

The victim blaming began as soon as we learned she wouldn't survive--before she was even gone. People engage in this behavior from a place of fear. They want to believe we--all of us--have more control over our lives than we do.

I understand that. I also understand how much my need to defend myself as Ember's loving, responsible, careful mother added to my grief in those early days.

It didn't end there, though. After she was gone, the rush to erase her began in full. Numerous friends stopped talking to us altogether. They didn't know what to say, or didn't want to deal with it, or perhaps thought we did not have a right to fully grieve our child.

Others reassured us that, hey, at least we know we can get pregnant. As if one child could ever replace another.

Many referred to Ember as "it." Some of our closest friends never acknowledged the loss at all.

I bit my tongue, because that is the socially acceptable thing to do. I swallowed my grief, and it swallowed me, too. I have nightmares every night. I wake up gasping for air, unsure whether I'm alive or dead. Maybe this is the dream where I actually die of the hemorrhage. Or maybe this is the one where I finally figure out how to go back in time and have a baby who gets to live.

People ask me how I am doing. I tell them fine. Because of course I am not fine. How can I answer such a question? I cannot continually announce that I miss her more than feels bearable and that I feel my brain breaking in half every second of every day.

I, like all of us, get snarky emails from colleagues and from clients. "Is there any reason you...?"

I want to scream that I have to live the rest of my fucking life without my child so maybe they could learn to live the rest of theirs without sending snarky emails that do nothing but make lives worse.

I don't.

I meditate, and practice deep breathing, and respond nicely, and donate money to people who have it so much worse than me because I need to turn this grief into something of value to someone.

I tell people that my older daughter is strong and brave and tough because she is. I leave out the part about her waking up crying for her sister several times a week because that makes people uncomfortable

I tell people I have great support rather than telling them that my mom has dementia, has no idea what is going on, and that I would give up all four limbs if I could just talk to her and have her be with me through this for 5 minutes.

My daughter's death has, so far, cost us $26,000 in medical bills. Like so many others in a nation that chooses profit over human lives and quality medical care, I have had to pay for the pleasure of emergency room negligence and numerous second opinions reassuring me that, yes, her skull really is growing into her brain. I tell people I feel lucky I can afford it. I don't feel lucky.

These facts are unique to me, but the experience is not.

This is the mental load of grief.

It's continuing to act like the world has not ended when it has.

It's acting as if people's petty concerns matter to you.

It's protecting people from the fact that bad things can happen to you even if you are good.

It's reassuring others that you are ok even when you're not.

It's easing others' guilt about their shitty response to your pain.

It's telling people who checked out on you that, no no, it's really ok. You understand. It's hard for them, too.

My mom's parents died within two months of one another. It was devastating to her. When we got the call that her dad was in the emergency room, I tried to reassure her in my 12-year-old way: "He can't die, mom. You've already been through too much. That's how I know it will be ok." This couldn't happen to my mom. My good mom who deserved so much better.

But it did. She didn't even get to say goodbye. And I remember her putting her hand on my shoulder and saying, "Life beats us down. Hard. He's probably going to die and there is no fairness here. Everyone suffers." And then she paused, as if she was searching for some way to find meaning in it. "Remember that when you interact with everyone, forever."

There it was. The only meaning to be found in suffering: that it happens to us all. This is the thing I keep coming back to as I try to grapple with the profound isolation of grief.

Six months into the COVID pandemic, millions of people across the country are facing grief they never imagined: the grief of not getting to say goodbye to loved ones; of being alone during a pandemic; of hearing that many people think those with disabilities and pre-existing conditions don't matter.

I'd like to believe that we, as a society, will wrap our arms around these suffering people.

I know better. We won't.

We hate the maggots that decompose bodies and return them to the Earth. We never consider thanking them for returning all of us to the world, recycling us into something useful. It's not because these vital beings are bad. It's because they remind us of the fate that eventually awaits us all.

So too with grieving people. We hate them, shun them, fear them, for what they remind us of. Almost every grieving person can tell a story of silence, a tale of the people who disappeared after the funeral, or who never showed up in the first place. Some have lost loved ones over cruel words and cruel demands that they "get over it."

As if any of us ever truly gets over anything.

Anyone who is lucky enough to live a long life will eventually face immeasurable grief. We will all lose people we love. Those of us who are especially long-lived may lose everyone and everything. To live is to suffer. It is the only thing we are guaranteed.

Grieving people reminds us of our own vulnerability, our own inevitable suffering.

That's a vulnerability we would rather ignore. We do so by ignoring the grieving, by treating them as pariahs, by making their grief lonelier and worse.

Even in the rare moments where we deign to discuss grief, we talk about it as an inconvenience, as something to "get over." We tell people to move on. We treat grief as a series of stages --a linear process with a clear timeline.

The reality is that loss is something we integrate into our lives. We are all left permanently changed by loss and grief. That's one of the benefits; we show care for what we lost by allowing the loss to shape the way we live. We honor our grief by growing from the experience rather than suppressing it.

Six months into quarantine, we're all experiencing some form of trauma. So maybe now, we'll be forced to confront our vulnerability. Maybe that will help us see how connected we are.

Grief is hard, but the thing that makes it unbearable is the mental load--constant reassuring, and hiding

No matter how you feel in this crisis, no matter how it affects you, I'd like to encourage you to run toward grief. Embrace the grieving instead of shunning them. Accept your own vulnerability so you can help other people live with theirs.

In a world where people are dying alone, where funerals often do not happen, where there may be no final goodbyes, we can put an end to another tragedy: the tragedy of ignoring suffering because it makes us uncomfortable.

I used to love the idea of being "in mourning." Wearing black or a veil alerted everyone to the fact that a person was in a fragile state. It encouraged gentleness, kindness, compassion.

We shouldn't need that encouragement. We should be gentle with everyone. We are all in a fragile state, because to be human means to live in a fragile state. My pregnancy was healthy and perfect until it wasn't. So too with life.

You are going to die. So am I. We will all suffer. Ignoring the suffering of those currently facing that reality won't change that fact. So reach out. Embrace grief and make it less scary.