You First

Once upon a time, or maybe 2 years ago, I got mad about something and wrote a post called Mean Streak. I felt kind of bad about it, hence the name and tone of the piece. I really wanted to call the post YOU FIRST. The current political climate in America has erased any guilt I feel about thinking YOU FIRST in response to the stupid argument: “we are all going to die someday”.

For those in the TL;DR class–what I was mad about 2 years ago was some damn social media comments on Angelina Jolie choosing preventative mastectomy due to her BRCA+ status. Some jerk went on a tangent about how we (Americans? society?) waste too much money on life-extending medical procedures, whether they be preventative exercises like Jolie’s, or those in the end stages of cancer, taking whatever medications they can, price be damned, to have a few extra weeks with their kids. He argued that we all die, and it was irresponsible (or something) to leave the family with a mound of medical debt. The “we’re all gonna die sometime” is a particularly callous point of logic when you are the one closer to death, believe me. Because, yeah, it is true, we indeed ARE all going to die at some point. Where things get tricky are the who and the when and the how.

For most of 2017 the repeal and replace debate has dragged on, zombie bills keep rising up. Those of us who’ve benefited from the Patient Protection and Affordable Care Act live on tenterhooks. In my activism role, I have been haunting the dark areas of the internet–political Twitter–and have often been enraged and sickened. Actually, I kind of stay that way. I remember being so upset when Kennedy was on Fox News and used the “we’re all going to die someday” argument, embellishing it with things like liberals don’t have a direct line to heaven, so there is no way any of us can know exactly when we will die. Her conclusion being that activists should settle down about whatever zombie repeal bill was in the news that day.

Note–most people know by now, but if not, yes, Kennedy was that annoying MTV VJ back in the 90s, hosted “Alternative Nation”. I did not like her back then, and I absolutely loathe her now.

Oh Kennedy, instead of being on MTV, you should’ve taken some classes in math or stats & probabilities or something. Granted, I avoided those classes too. But having cancer, I’m a little more aware of how it all works. For me, it is so, so simple. If I cannot afford health insurance, I will skip all my annual visits–oncologist, gynecologist, and even the GP. If cancer comes back, it will not be found. If it gets to the point I notice it, and it is found, I will not get treatment. See, that’s the advantage of having cancer a few years ago–I know how much every little thing costs. So I will die. Now, maybe I only have a 20-30% chance of recurrence, that isn’t too bad. Except guess what? I’ve been in those low probability categories before: my chance of getting cancer was not 1 in 8 (that’s lifetime risk), it was 1 in 233 (age 39); only 20% of us are HER2+, mammograms are only 80% effective–guess who got a false negative? So yeah, I’m not a fan of probability.

Sure there are many “ifs” in my line of thinking. So I can’t just jump to a slogan of “repealing ACA will kill me!” No, I don’t know this for sure. I just know the probability of repeal being a factor in my death is higher than that of Kennedy’s probability, or anyone else making that stupid “we’re all gonna die sometime” argument. See what I mean? Understand why I get angry about it?

Kennedy made this comment earlier this year, in the summer. I just shut it away because I was SO angry, and because, as my fellow resisters know, there are just too many things happening all the time now. I literally cannot pay attention to every little thing. But the memory of it came roaring back listening to Mike Pesca’s podcast “The Gist” last week. He was interviewing one of my favorite health policy reporters, Sarah Kliff, and they were discussing if slogans or arguments that cutting CSRs, Medicaid, and Medicare would really cause actual deaths. Kliff, being smart and journalist-like, cited studies proving yes indeed, a line, however long, can be drawn from lack of health insurance to death outcomes. Like my own example, there a number of “ifs” in that line. But, like I said, I had some improbable things happen to me, and it ended in cancer, and it sucked. I realize Pesca was just pointing out that hyperbole-style slogans are not exactly accurate, there is a great deal of explaining that has to go with it. He isn’t wrong; I’ve always had problems with breast cancer awareness slogans. Easy, tweetable things like “a mammogram saved my life” or “early detection saves lives” are debatable. Don’t get me started on the “feel your boobies” shit. But I see how they work. Easy, short messages succeed–along with cute merch, of course. So I engage in hyperbole–in spite of hating it–my own self now. Yeah, stopping CRSs, repeal without replace, that stuff will kill me (quite likely, see I have to include a disclaimer at least here, just can’t go full hyperbole).

So is it any wonder, now that I embrace overwrought slogans and bitchy quips, that when someone uses the pithy “we all gotta die sometime”, that I snap back with “yes we do, but you first!”? And, no, I don’t feel bad about it all. Two years ago, I did feel bad. I know it isn’t a nice sentiment. But the crass times we live in, with the lack of civility, have cured me of caring much if I sound downright mean. I remember crying on November 9, 2016. I was sobbing on the phone, explaining to my mother that I felt that this country was telling me it did not care if I died, because so many people voted in a Congress committed to repeal. She thought I was making a leap. But given the amount of “we all die sometime” sentiment I see expressed around the repeal debates, no I was not making a leap.

The healthy privileged in this country can glibly state the obvious, factual point that we all die at some point. But because of their health privilege, their employer-paid insurance plan, their likelihood of dying sooner rather than later is less than mine, less than that of my friends.

If it is so easy for these people to say “we all die sometime”, disregarding how it sounds to those who’ve gone into medical debt for every life-extending treatment they can, disregarding how it sounds to those of us about to lose health insurance, then I have no problem answering, “yes, but you first.”

I want to live. Don’t underestimate how much my will to live will make me fight you and your stupid, flip arguments.

Dear 115th US Congress, Please Stop It

Seriously. JUST. STOP. IT.

Do NOT attempt to keep repealing The Patient Protection and Affordable Care Act. Yes I used the real name, to remind us all what it was meant to do, even though, yes, it failed on some counts (more on that in a minute). I will NOT use the nickname everyone uses derisively, although I am forever grateful to that president.

I am tired. I am tired of living on tenterhooks. I am tired of my phone buzzing with various news alerts, and the constant notifications of tweets by Andy Slavitt, Sarah Kliff, and others fighting the good fight, explaining what the hell is happening, how it will impact regular and poor Americans like me. I’m tired of worrying ALL OF THE TIME.

I know, I know. I could turn off phone notifications. I don’t have to wade into Twitter, to be so involved. For starters, I am utterly dependent on ACA remaining the “law of the land” and I do not have the luxury of tuning out. I worry when the notifications are NOT happening too. I have to remain involved and engaged, to do whatever I can, no matter how small. It is frustrating I cannot do more—I would’ve been in Annapolis or D.C. today for Lives on the Line, but I have to work. That’s the breaks you are poor, you are a member of the gig economy and you have to hustle all the time. I just want to slap people who tell me to “turn it off” for a bit. I always notice the people who say that to me can afford health insurance, can afford my services, can afford to go on vacation.

And frankly I am proud to be involved even the little bit I can. I get up every morning and search the news and tweets. And it is horrible. Then I write the tweets for my local Indivisible group. I want to do this; NEED to do it. Because I’d be reading that stuff anyway—might as well use it, make a small contribution.

Since November I have not had one night of sleep in which I did not keep my mouth so clenched I did not wake up with a headache. The past few months have been alarmingly like the two weeks in early 2014, when the new imaging center I used thought I had a recurrence. That wait for the MRI, then the wait for the results–agony. I could barely function. The only thing different now is I’ve learned how to function a little bit.

But I am always in a shitty mood.

There was a tiny bit of reprieve early Friday morning, when 3 Senators voted no. And nearly 48 hours later yet another, a new proposal is being floated to once again repeal the ACA. On top of that, as I write this, the wanna-be Dictator is threatening to de-stabilize the insurance market. Does anyone even understand they are playing with our lives?

THIS. IS. NOT. A. GAME. You all are threatening my life. And I don’t just mean “life”—why is death always the metric. I mean how I die, with a roof over my head because debt hasn’t rendered me homeless.

I’ve written on this blog a little bit about heart disease—readers will know my family has a history of heart disease. My maternal grandmother was diagnosed with breast cancer (left untreated) while she was dying of heart disease. This was one of the reasons I was so blindsided by my own diagnosis. I get frustrated that women’s heart disease awareness movements “use” breast cancer to prove that heart disease is the bigger killer. But right now, I’m thinking this stress will give me a heart attack, maybe I should worry about cancer less? Will I survive a heart attack? What with all the heart damage Herceptin gave me?

The constant stress this administration causes me might kill me, and I’m not being hyperbolic, I HATE hyperbole (though I’ve had to use it lately). Maybe that is the plan—then I guess I won’t care if the ACA gets repealed.

And to be clear, it is this constant living in limbo that I’m speaking of here right now. I’m not even going to touch on the other stuff happening that is giving me worry—the threats to freedom of the press, the clear direction to authoritarianism that we are taking, my very real fear that the American democratic experiment is ending.

So I beg this Congress, stop it. Be the deliberative body you are supposed to be. Who do you serve, WHY do you serve? It isn’t supposed to be about “winning at all costs”, it’s supposed to be about serving us, The People. When so many people are telling you they will hurt—LISTEN TO US.

Yes, I know the ACA hurt many people. So figure out a way to fix it. I cannot believe I am advocating for, or defending insurance companies—the people I fight with on behalf of a provider (as a medical biller). There is a great deal of work to do, so stop with the shit-proposals. Find the way. You are supposed to be smart.

So please, Members of Congress, hear my plea. I want to live. I’ve lived through cancer, I know how much it costs (yep, even before the ACA it was too expensive—Obama didn’t cause that, greed did, read some literature about this). If my cancer comes back, especially metastatic, I’d like to live as long as I can, at least comfortably. I’d like to NOT bankrupt my family. Everyone threatened about government death panels back when the ACA was being written, remember that? Do you even understand that YOU have become the death panel now?

Stop it. Please. I need a break.