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Living Through the Unknown (Spoiler, unknown is all it’s ever been)

I’ve been sitting with thoughts lately that have nearly overwhelmed me. It’s about history and the stories we tell about it, and life and living it. It’s about how we act in the present, when we’re going through something.

I keep waiting for someone to show me how to deal with this season of unknowing — how this presidential election will unfold; how this pandemic will proceed; how we will recover from both, individually and societally — but no one is offering up a path forward. 

So I spent some time with my own thoughts, asking myself what I know about living through the unknown.

I thought about an 8-year-old girl named Sylvana, sitting on a boat from Italy to this country, bouncing her blanket-wrapped infant brother on her lap, her mother heart-broken to have left her own mother behind. Her father I imagine with a bit of confidence as this wasn’t his first trip. Their possessions were loaded in trunks. They were going from love and familiarity and lack to possibility and unknown. They were going through hope and fear. They couldn’t have known that all the money they would go on to earn as the years unfolded, money they would scrimp to save and send back to the bank in Italy would dissolve. Her mother couldn’t have known she would never see her mother again. They couldn’t have known that another World War would erupt.

I thought about a young Irish-American man who years later proposed to that young Italian-American woman, whose name had been changed to Sylvia. He then left for war, sailing that same ocean in the opposite direction. He went to fight evil with his life. He was going from love and familiarity and possibility to the unknown. He went through hope and fear. But he was going into war. Bloody, evil, necessary, unknowable war. He was sailing away, duty bound, and hopeful, so hopeful he would return and fulfill his proposal. They couldn’t have known that he would in fact return, and marry her, and with her raise 4 children and many grandchildren. 

The fact that I sit here now, granddaughter to these two brave, hopeful souls, secure in my freedoms and our bloodline, having lived a life of privilege founded on those hopes realized, makes it all seem like a foregone conclusion, a tale told out.

But it was the going forward, going through, that made anything else that has happened possible. 

When my grandmother as a homemaker saved every scrap of fabric, every bone for soup, when she canned the tomatoes, pickled the peppers, and saved the pennies, she was saving for the unknown. For she had known poverty, and she had known uncertainty. And having a cellar pantry and dollars and coins in a coffee can meant some security. 

And I sit here now, wishing so desperately that I could ask her how to endure the uncertainty, where to put my hopes and energy. But Covid-19 has her locked safely away in a memory-care facility, and I cannot reach her, by plane or by phone. 

Tuesday, tomorrow as of this writing, is Election Day, the outcomes of which we cannot yet know. And by “outcomes,” we must mean not only who will be elected but also how will the electorate react. A peaceful transfer of power, and a peaceful acceptance of the results, are not to be taken for granted. 

Whenever I’m facing a hard thing, I try to find the familiar in it, something, however tangential, to let me say, “I’ve done this before.” I’ve faced the unfamiliar: going off to college, moving to New York, moving cross country for my love, waaaaaaiting for him to propose, expecting our first child. Nah. Those weren’t scary, those were exciting! That was life unfolding. Like opening a present — I may not have know what was inside the box, but I knew it was going to be something that could be contained in a box. 

I do have one real-life example of being in the unknown. We’re on the other side of that tale, so I can tell it now, then see what we can learn from it.

Summer 2019, our little boy was two and a bit. He seemed a little ill, there was diarrhea for many days. I realized too many days. And when his typical high-energy and loving “game for anything,” “happy to be here” personality started to dim, I took him to the pediatrician. They weren’t too concerned. A few days later when he seemed even less himself, and a bit yellow in the eyes, and hadn’t done his morning pee until 11 am, the pediatrician said to go straight to the emergency room.  

That was an afternoon that led into an evening that led into a night of not knowing (and the first of many screenings of Frozen). Of a pediatric emergency room physician with pointy green glasses saying, “We don’t have all the information, and I’m not an expert in this, but it doesn’t look good.” I let her words wash over me. Ketosis. Cytokines. Kidney failure. Dialysis. Blood transfusion. And in a lowered voice with eyes locked on mine to make sure I was listening, she uttered, “Cancer is in the differential diagnosis.” I told her I understand the words, but I didn’t understand. Could we go through this again and take notes? She said quite flatly, no.

Later, I heard them say, “We need to transfer you to another hospital, by ambulance, and we’re sending you to Stanford.” And I pictured having a sick child, a really sick child. I pictured being a “cancer mom.” I wondered if my child were dying. I tried to imagine making Stanford work for our sick toddler while his older sister’s preschool and our support system were in San Francisco. And I stopped it. I just stopped it. I felt my feet on the floor, I smelled my son’s hair. I didn’t latch on to the words “doesn’t look good” and “cancer.” I highlighted in the transcript in my mind: “We don’t have all the information, and I’m not an expert in this.”

I asked, “Why would we go to Stanford, when there’s a world-class children’s hospital here in the city?” Their response was that they don’t have a relationship with that hospital. Snap — the sound of the thread breaking. Because this hospital’s relationships didn’t matter to us. We had to have the presence of mind to advocate for our family, and this insensitive doctor and this hospital’s “relationships” were meaningless to us. 

My husband took our preschooler home and tucked her in bed, and I rode in that ambulance, not an hour’s drive south, but just across town. We were admitted to the pediatric ICU. And we got as comfortable as we could with the not knowing. Not knowing what was wrong in his precious body, or how they would fix it, or if they could. Got comfortable with taking notes and dwelling only in the known, not in fear of the worst.

Things we knew:
The IV was hydrating him.
The catheter was draining urine.
His kidneys, though damaged, were working.

The team of pediatric nephrologists, kidney specialists, the actual experts in this, looked at the information and instead of jumping to terrifying, nebulous way stations, started to line up the numbers and the symptoms and propose a likely diagnosis: HUS, hemolytic uremic syndrome (hemolytic means breaking the blood; uremic means kidneys). Toxins trick the body into attacking things it shouldn’t, triggering an inflammation response, activating platelets, which block blood flow to the kidneys and shear the red blood cells as they go by. Since red blood cells are in constant state of breaking down, hemoglobin is not getting where he needs it, which could risk other major issues, such as his brain being under-fed oxygen. And HUS could be a chronic condition requiring management through dialysis and potentially kidney transplants, or in acute condition triggered by a specific strain of E. coli bacteria. (Please forgive any inaccuracies.)

I started to wonder about our blood types, and if we might be a match and if a small child could take a kidney donation from a grown woman. And I stopped the thought spiral. We weren’t there.

The nephrologist ordered a blood transfusion, which can help with the fallen hemoglobin levels. The risks are infection and allergic reaction. Those risks can be controlled and managed. Did she have my okay? Of course she did. The transfusion began at 3:40 am.

That transfusion strengthened him. He got through that first night without the need for dialysis. And the second, and the third. And the doctors became confident in the diagnosis. And by the end of those 8 days in the hospital, it was confirmed that HUS was brought on by E. coli 0157. His kidneys would heal. He would recover and this whole episode would be in the past. He should just avoid steak tartare and be sure to sanitize his hands at the petting zoo. We can manage this. 

What does any of this mean? Why would I share my most vulnerable moment as a mother and as a human? What wisdom can I articulate, looking back through my grandmother’s experience and my own?

Back to today. To the presidential election and the pandemic. We are well served to deal in the known. I will tap into the same wisdom that kept me sane and my family safe. My feet are on the floor, and my children, now three and a half and five and a half, their heads still smell like heaven to me. 

The pandemic. We have workable solutions to childcare and the kids’ education. Our housing and finances are secure. I miss my family terribly. I don’t know when I’ll see my mother, and I can’t know if I’ll ever see my grandmother again. That thought torments me when I let it. It’s high time to start thinking creatively about making it happen, safely, and likely with sacrifices. And through all the other sacrifices and inconveniences, we can manage this.

The election. I’ve written postcards to my home state of Pennsylvania, helped friends and family with their plans to vote, and I planned to work the polls, but alas a stupid gum surgery means I can’t talk without wincing, let alone work a 14-hour shift. So I had to admit I wasn’t up for that. I’ve done what I can; I’m showing up. Votes will be cast and counted. There will be a winner. People will react. The only thing we have any control over is how WE ourselves react.

I think it comes down to this — you can’t tell the story when you’re in the middle of living it. You can’t see the arc and the meaning. You can’t pack it up in a box. There is no beginning, middle, and end; it’s all middle. The present is for living, with eyes, heart, and mind open. It’s for asking, what do I know now? Who do I love? What is real? What can I do with what I have?

It’s election eve. It’s time to stop writing, editing, and perseverating. It’s time to pick up the kids. It’s time to settle in for a bit of unknowing, until we know. 

I’m glad you’re here, and I’m glad you’re you.

If this resonated with you, I’d love to hear from you. You can always drop into my DMs on Instagram, where I try to respond within a day.

—Erika

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