I am annoyed to be at the doctor on a Saturday, positive the MRI will show nothing, resigned to feeling lousy the same way I have been for what? Five years? Ten? For those who are paying attention, today is a key date — marking the first coronavirus death in the United States, which happened in my home county. Me, I’m not paying attention.
I have other things to worry about. My digestion is bad, I am exhausted, depressed, I have to devise elaborate systems to remember appointments and to-do lists. I’ve grown remote from my friends. Weight has piled on — 65 pounds in a year. I exercise till my knees give out and then stop. I am diagnosed with adult ADHD, then with Hashimoto’s Disease. Oh, perimenopause, too. Surely that is why my thinking is so foggy.
When I start having difficulty with my balance and seeing sparkly, headachy pinwheels, my general practitioner (the wizard diagnostician and all-around good egg Dr. Myint) says it’s most likely an ocular migraine, but let’s have a look, why don’t we?
It is not an ocular migraine. It is a meningioma, surrounded by a worrisome amount of edema, herniated and pressing on my right frontal lobe. The unnervingly young emergency room doc tells my husband, “Don’t let her go home.” Otherwise, he warns, “When she comes back she’ll come in here dead.”
“Did you have any … personality changes?” asks my neurologist at UW Medical Center. I’m a little surprised to see how vigorously my husband is nodding. “Eventually you’d have had a seizure,” he says. “It could have been three months, it could have been three weeks.” A seizure, he says, would’ve killed me.
Still, if you’re going to have a brain tumor, a meningioma is the one to pick. It’s a tumor of the membranes that surround the brain, slow growing and almost always benign. My prognosis is good.
Also good: having brain surgery at the very beginning of a pandemic, not when it’s in full swing.
March 1, 2020
Instead of shaving my head, my dashing UW surgeon puts my hair in tiny braids to keep it out of the way. He performs more than 400 of these procedures a year. They call him “the skull guy,” which sounds metal AF, as are the “30 to 50” staples left on my noggin afterward. The exact number is lost in the urgency of trying to save my life.
I’m in surgery for eight hours. At least that’s how long it takes before I get to the ICU. They’ve given me something to ensure I don’t remember any of what happens in the OR.
Meanwhile, a second COVID-19 patient dies, this one at the Life Care Center facility in Kirkland, less than eight miles away.
We all know how that story ends.
March 3, 2020
Post-surgery, I call my daughter “uncle” and ask for my dog. I tell all my Facebook friends that I had a hemangioma (a strawberry birthmark) on my brain. The coronavirus is the last thing on my mind, which is cartwheeling from idea to idea at dizzying speed. We meet with the physical therapist, the neurologists, the nurse practitioner. They want to release me. The average hospital stay for a craniotomy is three to seven days, says Google. But they want to let me go the day after they cut open my skull.
I’m delighted to be discharged (can anyone sleep in a hospital?), but let’s be honest, I can barely get to the bathroom on my own. Once home, we realize that the hospital is a dangerous place for me to be. Experts estimate new coronavirus cases in our region are doubling every six days. I’m on massive doses of Decadron, a powerful corticosteroid that makes me immunosuppressed. I’m also taking up a bed.
I emerge from the hospital to a different world. UW is now screening patients before they go inside. We’re not in official lockdown yet, but the streets are eerily quiet. My head pulses. Everything feels weird and wrong, and I don’t know whether it’s because I’ve just had gloved hands inside my skull or because everything is in fact weird and wrong.
Over the next 30 days, time slows to a crawl.
March 23, 2020
I develop steroid-induced psychosis — self-diagnosed on the internet, like everything these days. It’s hard to get a doctor on the phone. I wake up screaming from dreams of eldritch night-monsters chasing me through a landscape pocked with small, shifting holes. During the day I’m cheery, the words tumbling over each other in my eagerness to talk, talk, please let me talk?
I have delusions of being able to solve the problem of the Democratic primary and feel I have found the secret to parenting teens, which tells you just how far down the rabbit hole I’ve gone. I can’t follow TV sitcoms because my own thoughts move too fast.
March is the longest year of my life.
March is the longest year of everyone’s lives, as it turns out. Gov. Jay Inslee issues a stay-at-home order for Washington state, closing nonessential businesses and prohibiting social gatherings of any kind. For a while, it actually feels like my city is sitting at home, healing with me. #WeGotThisSeattle!
And yet: What will happen if I develop complications? Will I be left to fend for myself? Is our health care system about to break down?
Thankfully, that never happens. Seattleites believe in science. We’re good at this. Heck, social distancing is practically our way of life. News reports say the restrictions are working, we are flattening the curve.
My own pain pales in comparison with what others are going through. I know this but also I don’t know it? This is the biggest cultural crisis in my lifetime and it’s strangely abstract. All I’m being asked to do is sit on my comfortable couch with my springer spaniel and watch Schitt’s Creek. Everyone’s having nightmares. I am not alone.
My world telescopes down to my city, my neighborhood, my plum-colored house. My head hurts, but I start to heal. I discover that if I lie absolutely still on a sunny spring day, fat little wrens chase each other through the trees a few feet from my head. Forsythia blooms. My neighbors sing “Will the Circle Be Unbroken” together in the street, until even that seems too risky and we just wave from our steps. Kids bike in looping circles on our newly traffic-less street, being sure to stay at least 6 feet apart. Around and around.
April 24, 2020
I wake up and tell my husband, “I feel weird.” I spike a fever. My first thought, of course, is COVID-19, and I immediately arrange for a test in the Polyclinic Northgate parking lot. The perks of living in Washington state! “Further up,” the nurses urge as I shiver in the back seat and attempt to jam the swab as far up my nose as possible.
Around the country, protesters are gathering to demonstrate against lockdowns and other COVID-19 restrictions. On my Facebook feed, friends begin to express their exasperation with Inslee’s extended shutdown of the state. Has the curve been flattened? Or is just because we’re all still inside?
The clinic expedites my test and calls me the next morning to tell me I’m negative. What’s the rate of false negatives? 10%? 30%? I find differing answers online. Meanwhile, my fever continues to climb. I call the Polyclinic, I call UW Neurosurgery. Both tell me to call back on Monday. Something’s not right. When I hit 103 degrees, we go to the emergency room at UW.
Once there, the docs immediately treat me as a COVID patient, negative test be damned. Only one person is allowed in my room at a time, and they have to wear the full clown suit, mask, visor, plasticky blue disposable gown, and call for someone to help them “Doff!” when they need to come out. They send my husband home. Things get very dark.
When my second COVID test comes back negative, I watch bands of neurologists flutter around me, observing what comes out when they squeeze my head wound. It’s not pretty. My head is a giant ball of blinding pain.
I’m admitted and scheduled for a “clean out” surgery the next day. Already dehydrated and tortured by thirst, I wait for more urgent cases to be operated on before they have the capacity for mine. When nurses finally give me a bolus of saline, I watch it drip and hallucinate margaritas.
No one is allowed to visit me during this five-day stay. Not ever, not anyone. At night, panic seizes me, my chest tightens, my throat thickens. I’m certain I’m dying. I vomit, I alternate between chills and sweats, the inside of my skull makes strange ticking noises like an alarm clock, or a time bomb. It’s like the worst flu I’ve ever had — and I’m having it in the middle of a zombie apocalypse movie.
April 29, 2020
The infectious disease team arrives to announce it’s just ordinary Staphylococcus aureus, lodged deep inside the bones of my skull, but thankfully not in my brain. They install a PICC line, a catheter inserted into a large central vein so I can shoot up IV antibiotics at home. That’s right. Time to go home!
But something in the national mood has shifted while I’ve been gone. Indifference to the health of others is being cast as “freedom.” Disregarding social distancing makes people “warriors.” Increasingly, those who are vulnerable to the virus are seen as “only” those who are already sick, or old, or immune suppressed. The implication is clear. I’m not a “real” person, given my taxed system, and people are getting tired of protecting me by staying home. Survival of the fittest, right?
Even here in liberal Seattle, a writer of my acquaintance coyly describes her 80% gratitude, 20% rage at Inslee’s extension of the stay-at-home order. When I suggest manicures can wait, she writes a loving paean to the softness and shininess of her hair after it has been freshly cut. My own hair, when I touch it, is still stiff with gore.
May 8, 2020
This isn’t over. This isn’t even beginning to be over. The King County public health department reports that the transmission rate has stopped falling, and may be rising once again. Inslee has released his four-stage plan for reopening local businesses. I’ve started to hear the conchlike hum of the highway once again from my bedroom window. My stomach clenches with dread.
“In six months you’ll be back to where you were before the tumor got so big,” my neurologist predicted after my first surgery. Of course, I won’t. I can’t concentrate long enough to read. I already feel smaller, softer, more easily hurt. My scalp is cinched with stitches, my protective carapace is gone. I won’t ever be who I used to be. Neither will my city, my fair Seattle. We’re becoming something new together.