Photo illustration by Natalie Matthews-Ramo. Photos by Daan Stevens/Unsplash and Vasyl Dolmatov/iStock/Getty Images Plus.
My mom was on a ventilator the last week of her life. She died of lung cancer in the hospital where my brother and sister-in-law are doctors. Everything that could have been done was.
Recently, my brother has been working in the COVID unit, and his wife has been working in the emergency department in that same hospital. T.J. sends me goofy pictures in his mask and assures me he is being safe. But my brain says, If I lose him. If I lose her.
I know what working this unit must be doing to T.J. and Emily, to see people who look like Mom but without their families. I can’t stop thinking about Mom on a ventilator. I can take care of my kids, dog, cat, chickens. Meditate, do yoga, garden. But my brain won’t free me from this track. This is what the coronavirus means to me: my mother on a ventilator.
That’s how these people are dying, and people still don’t seem to understand what that death means. I did the FaceTime goodbye that families are doing right now. I was still in Spokane when the doctors decided that my mom needed to go on a ventilator, and there was no telling whether she would ever wake after. So, 30 minutes before the procedure, I FaceTimed my mom and I said goodbye to her. We cried I-love-you’s. I was lucky; she woke up. If she hadn’t, that goodbye would not have been enough.
Before flying to Madison to see her, I packed a black dress because my aunt Sue said: “Pack it so you don’t need it.” But we knew better. I brought Mom’s copy of her favorite book—Little Women—with the idea that I would read to her.
The amount of time Mom spent reading to me accounts for a substantial percentage of my life. I once found a reading log of hours of Beverly Cleary books in her neat, compact handwriting. I scanned the lines, “Henry and Ribsy, July 21, 1991, Ch. 2, 3, 4 & 5, 1.5 hours.” What if I could go back there, be that 5-year-old girl, but with the understanding that I would lose her? Snuggle closer and beg for one more chapter, and she would concede, like she always did. The next night we would have to reread the previous few pages; I had always fallen asleep.
Megan Rowe
But instead, I’ll read to my sons, snuggle closer, and when they ask for one more chapter, even though I’m dead tired, I will concede, like she always did. And I will read to them with the knowledge that one day they won’t have me anymore, but they’ll be able to say their mom spent her time reading to them. I asked for one more chapter; she said yes, of course.
When I got to the hospital, she wouldn’t let me read Little Women. It felt too “Mom is dying.” She refused the reversal of roles. She was my mom, I was her daughter. Reading was her job.
Mom was an unusual case of someone on a ventilator. Most patients spend the majority of their time sedated. Though Mom was on sedation drugs, she spent normal hours awake, and she wasn’t just awake. If we said something snarky, she’d give us the middle finger. She was armed with a whiteboard, and would determinedly scrawl sassy messages. She rolled her eyes too many times to count. The nurses and doctors loved her. But she kept returning to one thing. Her throat hurt so much. She wanted ice, which of course they could not give her. Since we were there, we were able to advocate for her.
Mom, on the whiteboard, at a family meeting, made the decision to go off the ventilator. The plan was for her to transition to high-flow oxygen, with the hopes that perhaps a Hail Mary treatment would be effective.
She kept returning to one thing. Her throat hurt so much. She wanted ice, which of course they could not give her.
Mom got her ice, and then some. She called it “the good ice,” the tiny balls. The nurses couldn’t keep up with the demand, and we took turns going to the machine. We cued “Ice Ice Baby” on the speaker we had set up in her room. Mom going off the ventilator meant there was little hope. But ice felt like a victory, and we danced like mad. We asked her if there was anything she wanted to eat. She wanted raspberry sorbet. T.J. and Emily’s best friend, Kelli, drove to countless grocery stores in a polar vortex to find Mom the raspberry sorbet. Mom destroyed almost the entire pint.
Needless to say, the last-ditch effort was unsuccessful. She shifted her plan to slowly decreasing the oxygenation until—well. I can’t finish that sentence. Mom decided how she would die so we wouldn’t have to decide ourselves, and she was fearless.
No one knew how quickly her time would go after that or how much she would be present. As it turned out, off the ventilator, we had a couple more days with her, and we had time to say things that needed saying. We’re a sarcastic bunch, but we had the time to ease into sincerity, to soften. To tell her over and over that she was the best mom, because she was.
Preposterous, but there was good in those days, there was love and laughter. We were all under one roof, in a hospital.
Later, a palliative doctor earnestly asked Mom if there was anything she wanted, and Mom retorted sarcastically, “A stuffed giraffe?” Giraffes were Mom’s favorite, and I bolted up, said I would be right back, and ran from the room. I had a memory from aimless wandering in the hospital gift shop. I bought the stuffed giraffe and returned to the room carrying it like it was a trophy. She loved the giraffe (partially because the care team had her on fentanyl), and named it Bernie because of its burnt-orange markings. We had our small victories, and she was able to cuddle Bernie under the crook of her arm when it was painful for us to touch her. He was so soft. Preposterous, but there was good in those days, there was love and laughter. We were all under one roof, in a hospital. We were a whole family for the last time, and all she asked was that we take care of one another.
The families of coronavirus victims don’t get those days. No goofy family stories. No middle fingers or sassy whiteboard messages. No “Ice Ice Baby.” No raspberry sorbet. No Bernie the giraffe. All of that, erased.
I guess what I’m trying to get across is that it wasn’t just that Mom died, but how: the wonderful moments, and the devastating pain. The people dying on ventilators right now don’t receive the former, and that is its own loss, its own grief. Nurses and doctors are doing their best to stay with their patients. I know that because I know two of them. But it’s still no substitute.
I’m not trying to suggest when or how our country, state, or city should open. I’m in no position to do so, and I would never pretend to be. I understand that this closure is creating all manners of suffering; that doesn’t leave my mind for a moment. And, full disclosure, as someone with a serious heart condition, I do have a horse in this race.
All I ask is for you to hold this in your head: my mom, and all of the people who are suffering as she did—only worse, because they are alone. Worse is overwhelming to imagine. People aren’t numbers or categories, not when they read you Beverly Cleary for 1.5 hours because you begged for one more chapter, and one more, and one more. And one more thing: read the next chapter. They’ll remember.
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