Not Knowing

Tending to Endings (nineteen)

It’s been strange these past couple months because while on one hand I have been reeling with everyone else with the rapid fire pace of Covid-19 and how it has dismantled much of everyday life, on the other hand, some of it feels familiar and like an extension of what started for me on November 6, 2018 when I took leave from my very busy job at a community college to go to Chicago to help my dad care for my mom.

Now that I have perspective on the arc of that story, I tend to forget that I saw my trip as fairly defined when I left Idaho for Chicago. Mom’s health was deteriorating due to Alzheimer’s, and she had painful wounds from radiation after her second bout with vulvar cancer. My dad and my sisters had taken her to specialists and the wounds still were not healing. She had even ended up at the emergency room. Also, my dad was recovering from hip replacement surgery.

My plan was to stay with my parents until they were both well enough to travel to their winter home in Maui, and then I’d help them get settled there and return home. I had a goal and twelve weeks of family medical leave if needed.

Just before I arrived, a doctor recommended a hyperbaric oxygen therapy for my mom that sometimes helps treat radiation wounds. I arrived just in time. My assignment involved waking up at 5:15 each morning and driving to the hospital and talking a woman with Alzheimer’s into sitting in a large metal tube for two hours. The therapy would take 20-30 sessions, depending.

My dad and I do well with goals, and we proceeded like we were training for a marathon. We marked each treatment on the calendar and sent each other high-five emojis from the hospital when Mom was safely in the chamber, the oxygen hissing into the capsule.

We overcame obstacles. An early snowstorm and icy roads closed the schools and kept all of the other patients and many hospital staff home one morning. But we made it, and waited for plows to free the chamber’s exhaust system from piles of snow so my mom could get her treatment. One morning my mom who was in pain didn’t want to get out of the tub, and my dad and I pleaded and bargained with her at the door until she finally said, “Fine, I know how important this is to the two of you.” And I helped her into her green scrubs while my dad brought the car around to the front of their condo building so we could make it just in the nick of time.

Weekend mornings we would stand over the calendar and calculate our progress. One day we saw were on target for making it to Maui before Christmas.

Only, my Mom’s pain wasn’t going away. Recently it had begun to seem worse. Her doctor prescribed stronger pain medication. Then, twenty-three treatments in and just after Thanksgiving, we took her to another specialist where we learned the cancer was back. My dad and I were deflated, defeated.

I’ve been thinking a lot about an essay I read recently by Elizabeth Outka published in the Paris Review about the literature of pandemics and particularly Kathrine Anne Porter’s, Pale Horse, Pale Rider, set during World War I and the influenza pandemic of 1918. The essay grapples with the questions of uncertainty the characters face in an ever changing situation. Outka writes,

The past is always another country, but the speed at which knowledge becomes outdated, naivete turns to realization, and basic truths change is dizzying during a pandemic. In “Pale Horse, Pale Rider,” Porter wove her own paradigm-altering experience into a broader meditation on the vertigo induced by such shifts…

One’s reality doesn’t simply shift in a pandemic; it becomes radically uncertain—indeed, uncertainty is the reality. The unpredictability of the COVID-19 virus and all we don’t know about it means we have no idea where we are in the story or even what story we are in. Is this the first wave of something even deadlier to come? Have we reached the top of the curve? What’s the scope of the tragedy? Is the economy the real story? What do we think we know now that may prove fatally wrong? The narrative of uncertainty causes many of us to turn to genre fiction and predictable movies (even if they are about disaster)—they allow us to pull down another story like a shade and sit in a place where we already know the ending. 

I don’t know if being a writer makes me more prone to wanting to figure out the whole story when I’m still in the middle, or whether it is just being human. Caregiving it seems is particularly prone to this state of not knowing. And my tendency in the middle of it all is to grasp at meaning, to try and see the whole picture, as though in figuring out the story, I will know how I will be able to stand it.

My mom’s story shifted many times over the next six months, and mine did too. I remember for a while after we had made it to Hawaii and my mom was on hospice care, there was a stretch of time when she was not sleeping well. She would wake up in the middle of the night and feel like she couldn’t get air. The nurse brought an oxygen machine and ordered anti-anxiety medication and Dad and I took turns staying up, walking around the condo with my mom holding her so she wouldn’t fall. None of it felt ok and we were low on sleep and we didn’t know if she would ever be able to rest again.

“It is not like a marathon,” I told my dad, “because in a marathon you always know what mile you are on.”

Caregiving is more like being in an open water ocean swim with no shore in sight. It is disorienting to not know how far you have to swim or how to pace yourself. You can’t even hope for the shore to come into view because when that happens, it also means, you will no longer have your mother.

One thing that helped me then and helps me now is admitting that my current job is not to try to figure out the whole story. It’s not, as my mind always initially tells me, to fix the catastrophe, whether it is a pandemic or cancer or Alzheimer’s. Maybe that should be obvious, but as soon as I am afraid for someone or something I love, old habits tend to rear their head.

Sometimes I think humility is the sleeper of superpowers. When I let go of the thing I cannot control and give into the reality of not knowing, I can ask the question: Ok, I guess my role here isn’t to fix or even to steer the whole global situation, so what is it?

Always I find something in front of me I can do with my particular skills and sphere of influence. Invariably, it feels too small for the conditions. Still, I can begin. Finding purpose buoys me, and I can swim.

I think now about my mom and I during one of those sleepless nights. It was 3:11 am when I awoke to the safety alarm and found her standing next to her bed, too agitated to sit much less sleep. She wasn’t having any of my reassurances. She wanted to go home (she was home). She wanted me to let her put on her shoes (we did, then undid). We leaned against each other, walking like two drunks around the condo, her balance gone due to dementia and me, groggy, and exhausted, but the more sober friend, holding her up.

I talked about the ocean and the moon. I rattled off stories from her childhood and hoped the medication would kick in. She asked me again and again to take her home. It was almost dawn when she was willing to sit on my bed and we talked about the house she grew up in, each adding details about the different rooms until finally, we slept.

That night, I was there for her to lean against. For that small thing.

More Resources:

Comfortable with Uncertainty, by Pema Chodran

Pale Horse, Pale Rider, Katherine Anne Porter

“How Pandemics Seep into Literature,” Elizabeth Outka, Paris Review, April 8, 2020.

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