The Story Of How The American Health Care Act Kills Your Mother

I could get on here and talk about my own experience (again), but if today’s vote on the American Health Care Act affirmed anything for me, it’s that no one gives a fuck about how sick I am. I don’t even care anymore, and that’s what scares me the most. If I lose my insurance through the ACA — which permits me to work from home as a self-employed Writer™ _ I couldn’t go back into the traditional work force. Not that it’d matter if I had Real Insurance™ — because that’s gonna get gutted too. Actually, since I have several pre-existing conditions (the primary one, I was born with: congenital absence of a Y chromosome, i.e. I’m a fucking woman) I’d be out of luck no matter what.

But you don’t care about me, and you know what? I don’t blame you. Catch me on a day as bad as today and I’d be challenged to give a fuck about your problems, too. Empathy has been burnt out for a lot of people in the last year or so, and I recognize that. So, instead of talking about me, let’s talk about you. Or more specifically, the broader, unspecified, You™ — even more specifically, let’s talk about your mother.

You know those stomachaches she’s been getting on and off for the last six months or so? Or maybe it hasn’t been six months. Maybe they started over the holidays: she was complaining about it at Thanksgiving while you were standing next to her mashing potatoes, but you weren’t really paying attention. Then, at Christmas, she seemed a little more run down than usual but, you know, she’s getting old. Aren’t we all, right?! She said something about menopause, and you noped the fuck out of that conversation. You don’t need to hear about how she and your father haven’t had sex in two months because she’s in pain, or how sometime around Easter she started losing weight really fast because she’s so nauseated she can’t eat anything.

She did go to her doctor, but he told her it was probably stress. She might start an antidepressant. She has the script, they gave her one, but she hasn’t filled it yet because deep down she doesn’t think she’s depressed. She just feels sick, except it’s kind of vague. And she doesn’t really want to tell anyone, lest she worry them unnecessarily. It’s probably nothing.

Six months from now she’ll find out, too late, that it’s ovarian cancer. She should have known — that’s what her aunt had, but of course no one talked about it “back then.”

Apparently they don’t really talk about it enough now, either.

She’ll tell you the news when you breeze into town the night before Thanksgiving — too late to really help her with dinner preparations, but she lets you poor yourself glass of the good wine. You start crying almost immediately, yet she seems eerily calm about it.

See, she had a bunch of other stuff in her medical record — high cholesterol, for one. And she had ovarian cysts as a younger woman, not that she ever told you. She thought they got better after she had kids. Maybe they didn’t. Maybe she should have paid more attention. In any case, she can’t seem to get her insurance company to pay attention. She doesn’t want to have more tests or even see her doctor, because for a while there, the co-pays were getting “a little out of hand”, she thought.

Then it seemed like her insurance company was just denying everything her doctor wanted her to have. She tried to explain that to them, tried to say it wasn’t that she didn’t want to have the biopsy or the CT scan, she was just worried about the bill. Her doctor told her she was being “noncompliant” but she would have been wiling to comply if she thought she and your father could afford it. She’s supposed to be on these medications, but they aren’t covered. Her doctor doesn’t seem to understand the disconnect between the pharmacy and the insurance provider. He suggests that she just call the pharmaceutical company directly and ask about getting it through charity care or something.

Your father said they’d remortgage the house if they have to, but your mother said “Oh, no, no, no. We’ll figure something out.”

They haven’t yet.

She knows they need to be thinking about it, but she’s feeling very tired these days. She’s going to have to stop working soon — she’s been taking too many sick days. Maybe she could get short term disability. But this whole situation doesn’t exactly feel short term. She’d ask more questions, but she’s just so tired. And she hurts. She’s not sleeping well and she doesn’t have much of an appetite. When the timer on the oven goes off and she turns to tend to it, you can see how thin she’s gotten but you don’t say anything.

Later that night when you’re in your childhood bedroom trying to fall asleep you’ll hear your dad’s weird, honking crying from the hall bathroom.

She’s dead by Christmas, but the ground is already frozen so she can’t be interred until spring. At her funeral, you realize that she was so much more than Your Mother. First, she was a daughter. Your grandmother will die just after the New Year and everyone will whisper it was a broken heart that did it. She was the love of your father’s life, and even though it always made you feel awkward to consider it, now that she’s gone and he’s the broken half that’s left, you understand completely what it means that he loved her longer than you did.

She was the “beloved” older sister, the “cool” cousin, the “fun” aunt. You’ll also find out that 3 different women considered her their “best friend”, and more people than you’d ever met or known about at least considered her a “good friend” or a “shoulder to cry on.”

You realize midway through the service that several generations of her students are there, and the ones that are now in college revert back into runny-nosed first graders when they see you. She was the “favorite teacher”, “the best teacher”, “the only teacher who ever.” Her colleagues will tell you, with their tired, red-rimmed eyes, that she had been nominated for Teacher of the Year for the fifth time, that they’re going to put a bench with her name on it in the courtyard, that her picture is hanging in the office —

You leave rather abruptly, excusing yourself as you twist away from the conversation. You look for your dad and find him out back of the funeral home, by where they park the hearses. He’s bummed a cigarette off someone. You’ve never seen him smoke.

“She would rather have died than make us lose the house, or dip into the money we set aside for you,” he says, and his voice isn’t unkind. He’s not blaming you, or her. But you will only realize that later.

“Why the hell was she even thinking about money if she was so sick?” you sputter.

“If she was going to die, she didn’t want to bankrupt us. It was hard enough if she wasn’t able to work, but, you know. . .medical bills on top of that. It was a lot, kiddo. She was trying to protect us.”

“So, what, she martyred herself?”

“I know you’re upset and you don’t understand. All I can say is that I hope you never do understand. I think that was what she was trying to accomplish. She didn’t want to think that you’d ever be in that position. Where you couldn’t afford to be sick. Where a funeral was cheaper than another round of treatment, or a hospital stay,” he drops the cigarette on the ground, “She didn’t want be a burden on you, or me, or anyone. She didn’t want to be the reason we lost the house, or used up the money we had set aside for you. She didn’t want to have to go on the Facebook and ask people to donate money to us.”

“People would have. If they’d known –“

“She didn’t want it to be like that,” he says simply, “She worked hard all her life. She paid her dues. She just thought. . .I mean I guess we all thought that was enough, you know? To have rights. To have access to healthcare without losing your shirt.”

“She could have had my money, and I would have quit school and gotten a job to help you pay for –“

“She didn’t want that, it would have killed her faster to see you do it. She would have died hurting in a way that she, blessedly, didn’t have to. She didn’t want to die thinking that she’d screwed up your life, or made you responsible for her in some way.”

“She was my mother,” you squeak, and you’re crying now, “I loved her. I love her. I would have done anything. I didn’t know — she didn’t — I didn’t even know — “

Your father, who has never been all that good at hugs, wraps an arm around your shoulder. He smells like American Spirits and shoe polish, and that perpetual new carpet smell of a funeral parlor.

“She loved you more than anything. Like any parent, she just wanted to make sure you’d have a better life than she did,” he says, and it’s so quiet you hardly hear his words. But the weight of them, you feel.