Saved by the Bell

Deny, Delay, Depose

When I was 21, I found a lump in my breast. I was in the shower doing a self-check like I’d done many times before, when I felt this tiny, pearl-shaped mass. It rolled around underneath my fingertips. My maternal grandmother - my Nanny - died of breast cancer. I knew I had to be vigilant, and even more so because my mother would never get a mammogram, even though I begged her. Even though all my doctors would ask about my mother’s medical history after they learned about my Nanny. They still do.

Some years, when my mother would ask what I wanted for my birthday or Christmas, I’d say I wanted her to get a mammogram. She’d sigh and get annoyed. “Breast cancer is not going to be the thing that gets me,” she’d say with absolute confidence. Sometimes she’d hang up on me.

I know she was overcome by fear. When I had lunch with her a few days later and told her I’d found this tiny pearl-shaped lump, her eyes got big and she went pale. And my mother, who was proper in public (and at home, too - she never let me see her naked even when I was little and it was just the two of us in the apartment), asked me to show her where it was, right there at the table. She reached over and I put her index and middle fingertips on it, over my t-shirt. She could feel it rolling around and she stopped eating. I’d never seen my mother scared like that, and it scared me even more than the lump. She went to the pay phone in the restaurant and called her doctor. I went in that afternoon, and was scheduled for surgery two days later.

The doctor told me she was going to be exceedingly careful in case I ever wanted to breastfeed. She said the scar would be so thin and small, eventually it would fade to almost nothing, and she was right. I’ll cut to the chase and tell you the little pearl-shaped mass was benign. Other than learning I was sensitive to anesthesia - it took me hours to wake up - and having a couple of weeks where my breast was really tender, it was just this thing that had happened. Life went on. My mother still refused to get a mammogram.

Five years later when I found another tiny mass in the other breast, I tried to remind myself that the last time it had been benign. Surely this time would be the same. But it’s a terrifying thing, and there’s no way around that. It pulls into focus how much you don’t want to die - and at twenty-six I was aware I’d barely begun to live, to really know myself. Those days between finding something like that - and getting it out of your body where it can be tested - are excruciating.

I went back to the same surgeon. She scheduled me quickly. Told me the scar would fade just like the first one, and she’d be careful to protect my ability to breastfeed one day, just in case. My mother said it would be like last time, and like last time, she didn’t come with me to the hospital. It was too scary for her, I guess, and my mother was someone who avoided the scary things until they came for her directly. So I went to the surgery alone, because my boyfriend at the time was an asshole, and my best friend was away.

My local chapter of Breastfeeders Anonymous.

The second surgery was not like the first. They put me under, and because it was in my medical record that I was sensitive to anesthesia, they gave me a little less. I counted back from one hundred, I think the last number I said out loud was ninety-seven. At some point - I don’t know how much time had passed - I became aware of incredible pressure in my chest. A pulling feeling that was not right, like someone was trying to pull the actual life-force out of my body. I was colder than I’d ever been, and immobilized - my arms and legs were strapped down. I could hear music playing, Fleetwood Mac, Songbird. I could see this blue-green color swimming in front of my face - a sheet between my face, and whatever was happening to my body.

I could hear my doctor talking casually to the nurse, something about weekend plans. I realized - slowly, through a fog - the surgery was still happening, and I was awake. More awake than I should have been. It’s not that it hurt - it was just intense pressure and pulling - but it felt deeply, horribly wrong. Like I had woken up on the other side of the veil, or like I’d been buried alive and needed to pound on the coffin so someone would hear.

I became afraid that it might begin to hurt and I wouldn’t be able to do anything.

I tried to speak, I tried to say I’m awake, I can feel what you’re doing, but I could not find the words. Wherever language lives - the part that controls your ability to form and utter words (a place called Broca’s area if you like to know these things) - that part of my brain was unavailable to me. I focused as hard as I could, and some kind of sound came out. If the sound had matched the effort, it would have been a roar, but it came out like a whimper. I heard the nurse murmur, and my doctor say something in response, and then I was gone again.

Next thing I knew, I woke up alone in a bed and someone was sobbing. I heard the sounds before I realized it was me. A nurse pulled back the curtains and told me I was okay. She had kind eyes and a soothing voice. She put her hand on my forehead in a way that felt motherly, and I desperately wished my mother was there - that I had the kind of mother who would not have been anywhere but there. She kept talking to me, telling me all was well, and that sobbing was a normal reaction to anesthesia. She patted my hand, she said, you’re all right, baby girl, and I believed her. After a few minutes she brought a straw to my lips and told me to sip a little water. She sat with me for a while asking me simple questions - if I’d always lived in New York, where I’d gone to school, if I had any pets. The fog started to clear.

Then my doctor was there and she told me they’d found a second tumor under the first, so the surgery had taken longer than expected and they’d had to give me more anesthesia. I told her I’d woken up at some point, and she said that wasn’t possible. I said I’d felt pressure and a pulling in my chest, unlike anything I’d ever felt before. I’d been freezing and strapped down. I’d tried to speak, to tell her I was awake. I’d heard her talking, and I’d heard Songbird playing on the radio. I knew I’d heard it, I loved that song even then.

That’s when she looked shocked and scared, and I felt confused. I just wanted some comfort, or reassurance. Some sense that people wake up on the operating table sometimes, and it’s awful, but it’s also okay. But she didn’t do that. She said she had to go check on another patient and hurried out the door. I think she was worried I was going to sue, but that thought never crossed my mind.

The tumors from that surgery were also benign, but I’ve had nightmares ever since. Not often, but also not infrequently. Dreams where something horrible is happening and I’m trying to speak - to yell stop! or no! or help me! - but no sound will come out. It’s one of the worst feelings I know, even from the depths of sleep. Most of the time when it happens, I break through the fog and wake up screaming.

I share this with you, of course, because last week Anthem Blue Cross Blue Shield announced they were reversing a policy that would have gone into effect in February. They had planned to limit reimbursements for anesthesia during surgery, which is a fancy way of saying they were going to cover the cost of anesthesia for a certain amount of time, and after that, if you didn’t want to gain consciousness whilst under the knife - well, friend, that would be on you. The cost of not feeling scalpels inside your body, not feeling some part of you open and exposed in a way that is terrifying and also, somehow, the loneliest thing I’ve ever felt - while there’s fuckall you can do about it - would be on your dime.

This is the stuff of nightmares, literally. Really generous of them to put the old ix-nay on that plan. Was it a sudden wave of compassion that overcame them, or could it have been a certain UnitedHealthcare CEO shot dead in the street? The better question: Where are we in this country that such an unethical, unfathomable idea ever saw the light of day?

Hundreds of thousands of Americans are driven into bankruptcy because of medical debt every year, and 20-27% of people with private insurance deal with denied claims regularly. The majority of Americans with private insurance report difficulty understanding what will be covered, and what will be their responsibility. How is it that we live in the United States, we pay taxes, we work our asses off, and we cannot count on the very basic things in return?

Universal healthcare has gotten a bad name in this country, but who gave Universal healthcare a bad name? Who paid for the ad campaign to turn Americans against their own best interests? As ever, follow the money. Who benefits from privatized healthcare? That’s really all you need to know. Once you understand that part, the rest of it is easy.

Healthcare in America is a business, it’s run by corporations, and they do not care about you, or me, or our parents or children or friends. They don’t care about people living on the fringes of society at all. They care about their CEOs and board members, their shareholders and stock options. You and your cancer? Tough shit, they’ll cover what they want depending on the plan you can afford, whether you have a PPO or HMO, what your deductible is, and what your maximum out-of-pocket costs are.

Your child’s asthma? Your mother’s diabetes? Prior to the Affordable Care Act - which is another name for Obamacare, the situation was even worse. People could be denied coverage for pre-existing conditions, and one in two Americans has a pre-existing condition of some kind or another. Even with the ACA, good luck not going bankrupt if you have a medical crisis. And the incoming president? He doesn’t like the ACA because he’s a petty little man who wants to undo anything Obama did. He’s had years to come up with something better, and all he has are “concepts of a plan” and a team of billionaires he’s tapped for his new administration.

This is not sane, it is not humane, it is not the way a developed country or any country should treat its people. It is not normal, no matter how much it’s been normalized. We are broken here, we have lost the thread. Conversations about a single-payer healthcare system are shut down. People start telling you how long you’ll wait for a specialist, much better to do things the way we’re doing them. This way people can have their precious freedom to die a horrible death.

America, the “beacon of hope” for the world, is the only developed country without universal health care for its citizens. The Commonwealth Fund, an independent research group, just compared healthcare systems in Australia, Canada, France, Germany, the Netherlands, New Zealand, Sweden, Switzerland, the United Kingdom, and the United States. If you have any doubt about how bad things are, please note we are the best at being the worst. We ranked lowest in all areas but one. Here is a chart from the report if you don’t want to click on the link:

This is embarrassing.

Here is a not-funny comic strip (thanks to the phenomenal

Aubrey Hirsch

) that will give you a good idea of what it’s like in the states if you happen to live somewhere else.

In December of 2021, when it became clear that my mother’s time was very short (she’d been battling ALS, a disease that came out of nowhere and caused her to suffer in ways that are painful for me to remember and impossible to forget), we wanted to get her home for one last Christmas. She’d been in the ICU for a month, surrounded by people who were in various stages of dying, many of them with Covid. Some of those people had Medicare, some did not. My mother did, but when it came time to try to get her home because all hope was lost, I filled out 29 pages of paperwork to switch her into the hospice network.

Even with that coverage, and with people at home to care for her, she had reached a point where we needed skilled nurses. We needed hospice care workers to monitor the bipap machine, her feeding tube, her catheter. She would have needed 24-hour care. Even with insurance, you’re lucky to get help three days a week, for five hours each day. And if your loved one suddenly can’t get enough oxygen even with a bipap machine, and you can’t bear to watch them suffocate to death - and who the fuck can bear that - you’re going to want someone there who knows what to do. Who can administer enough morphine to keep them calm as the body they’ve lived in forever can no longer sustain them.

As the life they knew slips away. As the body that brought you into this world becomes nothing more than a body, lifeless. Hands you’d know anywhere. Giant brown eyes that will never look at you again, not in anger, not in love. A chest you sob on even though there is no one there anymore to hold onto.

The cost of in-home twenty-four-hour hospice care in New York City is five thousand dollars a week out-of-pocket. As it turned out, my mother didn’t make it home for Christmas, but I can’t tell you how much it sucks that I spent any time at all in those last days filling out hours-worth of paperwork, and feeling sick with worry about how we were going to care for her. Or how truly awful it was to get calls from her insurance carrier for weeks and months after her death, asking if there was an estate to take care of the thousands of dollars of out-of-pocket care she received in the hospital. I was grieving in a way I find hard to describe, and simultaneously getting calls from people whose job it was to suck every last penny they could from my family. And this is not even an egregious story.

When I was a child I read Edgar Allen Poe’s Premature Burial. I shouldn’t have read it, I was too young and it worried me for a long time. You don’t need to read about the number of people who were buried alive in Victorian times when you’re eight years old. Poe was obsessed with what he called “the ghastly extremes of agony” and one of the themes in many of his stories is the effect of terror on the human mind. Waking up in the family vault when you aren’t dead, realizing no one can hear you, and while you might not be dead yet, you will be soon.

Nevermore. Photo by Denys Hrychak on Unsplash

Or waking up inside a country that does not value your life, or the life of the people you love, realizing you are wildly unsafe. Especially if you’re sick, or dealing with chronic illness, or worrying whether someone you love more than anything is going to be okay. If you’re poor in this country you’re screwed. The last thing you should have to consider when you’re not well, is whether to pay for your life-saving medications or your electric bill. Whether you can afford to drive three hours one way to see an OB/GYN, and three hours back, because there’s only one doctor in your whole district, and she serves 18,000 women and girls - the way it is in rural parts of Missouri (thanks

Jess Piper

). That means losing a day of work, and maybe you can’t afford to lose a day of work because you’re barely able to feed your family. Just hope you don’t have cervical cancer, I guess.

In Victorian times, there was a practice of putting bells inside coffins - they were called “safety coffins” - in case a person was accidentally buried alive. This is where the expression “saved by the bell” originated. We really need to find the language to break through and wake up from this nightmare so we don’t fully embody the roles we’ve been assigned - pawns in a system designed to make billionaires more billions. Screaming at each other, filling our bellies with rage-bait and spewing vitriol, instead of teaming up to ring all the fucking bells, together.

If we want to be saved, we have to save ourselves.

If you’d like to meet me in real time to talk about the state of healthcare in this country, but also the lack of compassion, kindness, ethics, morals and common decency, generally - I’ll be here 12/13/24 at 11:15am PST, or you can wait for the Come As You Are podcast version which goes out Saturdays. If you’d like to meet me in Croatia in June, I’d love that so much. And I always get excited to meet you in the comments, y’all are the best. Sending love xx