Kiss My Astrocytoma

Kiss My Astrocytoma

I had a phone visit with my palliative care PRN this morning. Long story short I’m going to take a short course of prednisone during CZT training to make sure I can do the thing. Because it’s only a week’s worth of generic ‘roids at a low dose, my Rx only costs about $4.

Which brings me to the whole “Medicare can negotiate drug prices” part of the Inflation Reduction Act. I’ve read in a few places that it will benefit seniors specifically, but I’m not sure if disabled people on Medicare are just casually being erased from the headlines again, or if I’m still extra screwed. I’m trying to find an answer.

This is just one reason why I’m still engaged politically when I should be “focusing on getting better.” My shingles vaccines, which I’ve mentioned before, cost $200 EACH, for example, and I’m not allowed to make enough money for our household to survive or they’ll cut my disability income completely and we’ll have even less than not enough.

Maybe if the “safety net” wasn’t an all or nothing proposition?

Bottom line, if anyone out there wants me to shut up about it already (and, yes, people do sometimes say it out loud) they can kiss my astrocytoma.

I’m relieved it’s only $4 for this prescription. The antibiotic ointment my oncologist prescribed a couple of weeks ago cost $35. Not exactly in the budget, and I prefer to put my creativity into Zentangling—not wondering how to afford medicine.

I know these posts aren’t fun for people to read. They are much less fun to write. But no one is going to do it for me. This is as boot-strappy as it gets for the girl who grew up in the most polluted county in Indiana. (In case someone tries to blame my cellphone usage for my brain cancer again instead of spending equal time wondering if our environmental regulations are too lax.)

I know, I know. Blaming me is so much easier.

Whatsoever a Country Soweth

Whatsoever a Country Soweth

“For whatsoever a country soweth, that shall it also reap.” —Emily Suess, paraphrasing Galations 6:7 and lifting it out of context to make a rhetorical point

Last night someone on CounterSocial said we should do our best to write about the FBI raid of Mar-a-Lago without being sardonic or sarcastic so that posterity might know how people felt about current events long after said events are no longer current.

Damn that’s a really big ask—to edit the snark I mean—but I do think there’s value in the exercise. So here goes nothing.

I was in bed watching some art videos on gesture and composition when Dan came into the room to tell me that the FBI executed a warrant and Trump was shitting proverbial bricks while crying about his safe.

Members of the GOP judiciary were wondering what the world had come to if warrants could be issued to search the homes of old, white men.

And Marjorie Taylor Green was confessing nothing would get her to stop calling the people sporting antisemitic sweatshirts and literally killing people and smearing poop on the walls of the Capitol on January 6th—all in the hopes of installing the literal loser of an election—Antifa.

“Really?” I cackled, somewhat inappropriately. “That’s awesome.”

A while later, my sister-in-law texted to see if we’d heard the news. We had a good laugh at Trump’s expense, and then I wondered aloud what kind of dirt Trump had on people for them to still be defending and financially supporting a man who, as one internet stranger so eloquently put it, “commits a felony as frequently as he takes a shit.”

These sentiments might seem to be steeped in overt, politically motivated schadenfreude. Especially when taken in light of my conservative contemporaries’ proclivity for projection. But I assure anyone reading this long after I’m dead that I only see Democrats as beacons when compared to the moral debauchery of the Trump Crime Syndicate, more colloquially known as the modern GOP.

If you need to juxtapose me with my historical context for clearer understanding, dear scholars of the future, know I loathe the two-party system. Know I loathe the Electoral College. Know I loathe the false binary of everything, but especially political discourse. But also know I do not loathe Democrats and Republicans equally.

Republicans wanted Trump after all.

Yes, someone is always eager to point to Liz Cheney or Adam Kinzinger and say to me “not all Republicans.” To which I say:

Trump was known to be the most corrupt, inept, and outwardly racist and misogynistic choice from a field of at least 10 candidates. He was chosen by Republicans to be the presidential nominee—the figurehead of the party and what it stood for—because of his ability to exploit anger and fear, not in spite of it.

Someone out there might be able to appreciate a soggy square of moralistic toilet paper among a bowl full of pearl-clutching turds, but it ain’t me, babe.

I don’t know if that qualifies as snark, but it’s not meant to be. I want future scholars of American history to understand how abhorrent I find political conservatism. In 100 years I want them to smell the inhumanity of the dumpster fire that stacked the courts, rolled back voting rights, and told us the only way to stop mass shootings was to make sure angry, radicalized assassins had an easy time procuring multi-round guns and plenty of ammunition.

For me, each glimpse of Trump’s legacy burning is satisfying on multiple levels. It’s not just watching an arrogant asshole get what’s coming to him. It’s also witnessing a depraved, wholly self-interested political party scatter when the lights are turned on.

Our glee is a confession. An inappropriate but entirely natural response. A way of acknowledging the truth that fascism didn’t tighten its grip on this democracy because we accidentally let The Bad Guy’s wife redesign the Rose Garden, but because too many people planted hate and fear instead of carefully tending social justice.

For whatsoever a country soweth, that shall it also reap.

Tom Hanks is Just So Meh Right Now

Tom Hanks is Just So Meh Right Now

I’ve been joking for a while that no one would pick me for their Zombie Apocalypse Team. Except maybe as the friend you sacrifice to slow down the horde that’s chasing you.

That sentiment, along with the post-election fallout, and this week’s episode of The Walking Dead all led to one insane nightmare earlier in the week. As concrete rubble rained down on me and a stranger, she began crying. I grabbed her arm and said, “We’re not dead yet.” But it felt like maybe death wasn’t too far off.

That’s about the point I woke up from the dream to my pulse pounding in my ears. While waiting for my body’s overly sensitive stress response to chill out,  I started thinking about what contingencies I should be planning for come January 21, 2017.


Then this morning I read that Tom Hanks wants us all to calm down and my eyes rolled so far back in my head, you guys.

Some people would tell you you’re overreacting if you drive around with a spare tire in your trunk. I’m guessing those people ride in limos and taxis and always fly first class.

Yeah, being calm under fire is helpful. However, when Hanks says, “We are going to be all right. America has been in worse places than we are at right now,” and “We who are a week into wondering what the hell just happened will continue to move forward,” I wish someone would tell him to sit the fuck down.

Just because his rich, privileged ass has always walked away unscathed doesn’t mean the rest of the nation can expect the same. He might move forward; others might have to take a few steps back to put their hijabs back on. To mourn their loved ones. To protect their children. To find a safe place to live.

Intentional or not, he’s made a public call for complacency. I wish he’d requested our diligence instead.

Emily’s Recommended Resources for Activists

Emily’s Recommended Resources for Activists

This list could be longer, but I’ve had a rough day with work and the stupid fibro. I’ve tried to hit on resources from different areas to serve as your launchpad. Please contact me or comment with resources you’d like me to consider adding to the list!

rules for radicals.png
Rules for Radicals by Saul Alinsky

This is one of the first books on activism I read. (Yikes! It’s been about a decade ago now that I’m doing the math.) Part of the joy of reading it for me was knowing how much this Saul Alinsky guy was and is hated by people you might collectively call The Man.

Tiptoe through the one-star Amazon reviews, and you’ll get a taste of what I mean:

“The book is chilling as it describes how to undermine government and take it over for the benefit of a splinter group. Read it for understanding, but don’t take it as good advice.”

I suppose it is “chilling” if you’re comfortable with the status quo and terrified that the powerless might become the slightest bit empowered. It’s downright terrifying if you believe equal rights for all means fewer rights for you.

True story: I was once told that Alinsky was a “horrible communist tool of Satan.”

“Oh”? I said to the fifty-something white guy at Borders, “You’ve read it then?”

“Of course not,” he spat.

This book has been around a while. So if you’re looking for a step-by-step, it’s probably a little outdated. However, it’ll get your brain working in creative ways and show you how disruption gets attention.

Southern Poverty Law Center

Bookmark this website.

Since this post is written in the context of Trump’s looming presidency, I want to call specific attention to the SPLCs invaluable efforts to track hate incidents and report on hate-related activity through their Hatewatch initiative.

Report your experiences and encourage others to do the same.


On a related note, much of mainstream media is being criticized for their reporting right now. Take Stephen Bannon, Trump’s pick for chief strategist and senior counselor as a prime example. CBS News described him as a “former Goldman Sachs executive.”

The SPLC reported the actual news in this story with their article “White Nationalists Rejoice at Trump’s Appointment of Breitbart’s Stephen Bannon.”

In addition to hate and extremism, the SPLC also fights for immigrants’ rights, criminal justice reform, children’s rights, economic justice, and LGBT rights.

Activist Hashtags on Twitter

Earlier this year, the Washington Post wrote about how hashtags have the power to change the way we talk about social issues. From #Ferguson to #BringBackOurGirls, social media has proven it’s a powerful resource for keeping the public informed and organizing rallies, protests, and other events. (It’s also a powerful tool for harassment and trolling, but I’m trying to stay positive.)

If you use Social Media to keep in touch, you can also use it to be engaged. (Of course, this advice comes with a couple of caveats: 1.) trolls are out there; retreat as often as necessary and 2.) be wary of false information that spreads like wildfire.)

Here are a few current hashtags you might want to keep your eye on right now:


and if you can stomach it:


I believe it’s important to be informed, so I include the latter two hashtags as possible ones to watch. If it’s too much, though, stay away. I don’t check them regularly, and I NEVER engage the obviously hateful accounts. I manage to stay relatively informed without being triggered. Your mileage may vary.

And of course, as news breaks, keep your eye on Twitter’s trending list. I invite you to follow me, your state and local representatives, and activist organizations you’re aware of. Through retweets and hashtags, you’ll be exposed to more ways you can get involved and you’ll also find reassurance that you are not the only one who wants to fight for justice.

Emily’s Introductory Rules for New Activists

Emily’s Introductory Rules for New Activists

This post is for my friend Angela.

The more I write about activism, the more you’ll understand how loosely I use the word “rules.” But here’s something to get us all started.

1. Embrace the Discomfort

Being an activist is not easy. It requires doing things outside your comfort zone, taking a stand against powerful oppressors and oppressive systems, getting the side eye from people you love and respect, and confronting ignorance, both willful and accidental.

When these things happen and you start to lose confidence in what you’re doing, when you start thinking maybe you’re being too pushy or too bold and you’re doing yourself and your cause a disservice—please realize these feelings are signs you’re doing it right. You’re pushing for change but still able to evaluate if what you’re doing is helpful or harmful. That’s the sweet spot.

2. Reject Absolute Binary Positions

People who insist that saying Black Lives Matter means you can’t respect white lives and love indigenous people are just wrong.

When I tell my mother “I love you” my husband doesn’t pitch a fit and divorce me because suddenly I no longer love him.

I think as activists we are already sensitive to absurdities like these. But false binaries come from within social movements and organizations too. In college, for example, a fellow activist theorized that our group should discount religious organizations because they harbor oppressors and encourage “othering.”

Your allies are everywhere, and finding them in unlikely places is exhilarating. However, when we accept oversimplified narratives about very complex issues, we decrease our chances of finding them.

3. Prep for Exhaustion

Before you really dig in, I want you to prepare for the inevitable exhaustion. Being an activist can be physically exhausting or mentally exhausting or emotionally exhausting or any combination of these.

Identify the things that make you feel good and help you recharge and be ready to run to them when you need them.

My first-tier aid is music. I have a couple of playlists—one called “Empowering” that includes Shakira’s “Try Everything” and P!nk’s “Fuckin’ Perfect.” Then I have another playlist called “Relax and Soothe” that includes songs like John Lennon’s “Imagine” and Carrie Newcomer’s “Leaves Don’t Drop (They Just Let Go).”

Humor is another great healer. I thank God for the John Olivers and Amy Poehlers and Dave Chappelles and Bill Hickses of the world whose work keeps us woke but laughing.

Okay, there’s a lot more to cover. Stay tuned!

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