An Update of Sorts

An Update of Sorts

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I had a fibro flare (or something) the week before Thanksgiving. Then on the Tuesday before Thanksgiving, I fell. I smacked the back of my head on the hardwood floor in the bedroom and landed rather spectacularly on my left elbow.

Then on the Friday after Thanksgiving I had a mild fever and was achy all over. Today, I have a sore throat, plugged ears, a runny and sneezy nose, and continued aches in addition to my usual chronic pain.

I’m grumpy, but Boomer seems to feel sorry for me and has taken to snuggling me more than usual.

***

While my parents were here for the holiday, my mom helped by shopping for and assembling our pre-lit Christmas tree. We also have fake candles in our front windows, and snowmen on top of our upright piano. It’s a cozy time to feel sick, at least. There’s more decorating that could be done, but will only happen if I’m feeling up to it. Fingers crossed.

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!

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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.

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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:

#NotMyPresident
#Normalization

and if you can stomach it:

#Trump
#AltRight

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!

No One Deserves an America Like This

No One Deserves an America Like This

The following text was originally posted on my Facebook page. It sets the backdrop for an upcoming series of posts I have planned on activism, and so I republish it here to give you some context on who I am as a political being living in the United States post-Election 2016.


DISCLAIMER: This post is for those interested in my thoughts. If you don’t care about my opinion, please just keep scrolling.

ALSO: This is not an invitation for internet-style debate. If you agree with me, by all means comment! If you disagree with me and can do so while simultaneously owning that your analysis is your analysis and not the only analysis, please comment!

As you may have recently been made aware, my blocking finger works on a hair trigger. My house, my rules. My uterus, my rules. My Facebook page, my rules. 

One of the things that makes me furious about the aftermath of Election 2016 is the argument lobbed at me (always unsolicited, of course) that American voters—specifically those of us who voted for Hillary—got what we deserved, because Bernie.

Arguments in this category are not one-dimensional. You’ve got your “evil Hillary!”, your “corrupt DNC ergo evil Hillary”, your “fuck the two-party system”, and so on. (Plus all the possible permutations. You know, on that rare occasion someone using the internet realizes that the system that led to Hillary’s nomination is hella complex and a root cause can’t actually be boiled down to one thing.)

Me? I don’t outright dismiss any of these arguments. I find some of them ring much truer than others. But going down that path is to venture a little too far from my thesis, which is:

None of us—particularly those of us who voted for Hillary, but even those who voted Trump—deserve Trump as president.

He is a horrible human being, and he spent his campaign pitting white males against literally everyone else. Not everyone fell for it, of course. But some did. Others didn’t even have to fall—they were right there waiting for the man to free them from the “shackles of political correctness” or, put another way, provide them salvation from any obligation to follow the Golden Rule.

Trump inexplicably picked up votes from some he didn’t even try to woo, too–namely white women.

(What the ever-lovin’-fuck, you guys? I’d ask y’all to help me understand what that demographic was thinking, but I don’t think my heart’s ready yet.)

You probably already know I wasn’t alive for Nixon’s campaign. But I’d read about his Southern Strategy, seen the oft-referenced First Civil Right campaign ad of 1968, noticed a pattern in Trump’s rhetoric, and thought to myself, “Shiiiiiit. We won’t do that again, right?”

Plus, people were making legit comparisons between Trump’s surge in popularity and the rise of Hitler for chrissakes.

If you’re interested in getting a snapshot of where I stand politically, I was 98% in agreement with Bernie on policy and 97% with Hillary according to ISideWith.com. I voted Bernie in the Illinois primary, and was disappointed he didn’t get the nod. But I was not devastated that Hillary did. So, fuck yes I was excited a woman had a shot at the presidency. But, fuck no, I wasn’t merely voting against Y-chromosomes.

Anyway, on Tuesday morning, November 8, I was excited about a Hillary win. Not because I thought she was perfect but because I thought she was way more than qualified for the job, she had pulled off some pretty impressive wins for the underdogs in her 30 years of public service, and she would be the most likely to help and protect underrepresented groups in America. I fall into two of Donald’s “other” categories: woman and disabled. People I love fiercely fall into virtually all of the “other” categories I don’t.

Being sick and low on energy, I was hoping to have four years of holding Hillary accountable and making some sort of progress. However, instead I have to go full-on activist to make sure America doesn’t collectively lose more ground in human rights. You can’t reasonably deny the subway harassment, the swastikas spray painted on dugouts, children telling other children they have to “go home” now. And you have to take seriously every political promise to curtail women’s reproductive rights, revoke marriage equality, deport our neighbors, and on and on.

BECAUSE THEY ARE COUNTING ON YOU NOT TO. THEY DON’T NEED YOUR BLESSING. THEY NEED YOUR APATHY.

Bottom line: No one deserves an America like that. Especially not anyone who voted at every opportunity to prevent it.

Emily Suess, Troublemaker Extraordinaire

Emily Suess, Troublemaker Extraordinaire

I didn’t live with my parents for my senior year of high school. My dad changed jobs during some kind of personnel restructuring or something at his employer, and my parents moved to a different state. Being filled with love and mercy, my folks opted not to rip me from my hometown and instead worked it out that I would live with family friends to finish my last year of high school.

Thanks to time and brain fog, a lot of my life between 1997 and 1998 is blurry. An acquaintance or classmate might come to mind, but I will probably only recall a face and first name while straining for a last name or another important detail. Said detail will simply burrow deeper into the recesses of my mind until I’m angry and frustrated at my inability to recall stuff I thought would be accessible for my whole life (or at least another 30 years).

One thing I do remember from this era of my life, however, is a tiny bit of a conversation between my mother and her best friend, the woman who let me stay with her. Being church friends, the conversation had major religious themes. This woman said to my mother, “…and then it hit me. ‘Ye have not because ye ask not.'”

***

The fall after my graduation, I enrolled at the University of Evansville as a physical therapy major. And, much to everyone’s surprise, I dropped out of college a couple of weeks after I started. (And by “dropped out” I mean I just quit attending classes.) I was miserable and not really sure why until the Dixie Chicks’ “Wide Open Spaces” started playing pretty much everywhere. I felt that shit in my soul.

I struggled with some guilt for a while, until I realized that quitting was the first time I’d done anything for myself. I felt I’d let others down; I did not, however, feel I’d let myself down.

Too bad I wasn’t able to express that at the time, but hindsight amirite?

I was squirming on the inside, trying not to be a total flake while acknowledging that things were different now. I was different.

***

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Emily dressed as a school secretary.

Fast forward to 2006, another memory I recall, but this one in vivid detail.

I was 26 and working at a public elementary school in an economically depressed area of Indianapolis. The students were hungry and edgy, the parents were pissy, and one teacher in particular had a perpetual burr up her butt.

On the preceding day, one of Mrs. W’s students had missed class and didn’t get his report card. She was going to leave it in the office to be picked up, and she wondered in my direction if it should be put in a sealed envelope.

“Yeah, that’s probably best,” I replied while trying to enter a new registrant in the system, answering the phone, and fixing a small redheaded girl’s broken glasses for the sixth time that day.

After a few moments I looked up to find Mrs. W still standing in front of me. Lips pursed, left hand out, right hand on her hip. With the phone receiver wedged between my head and my shoulder, I did my best to shrug my confusion.

“The envelope.” She didn’t even bother to mouth it silently as I spoke with a parent on the other end of the line.

I glared, put the kid’s glasses down, and rolled my chair back to where the manila envelopes were lying on the counter. She could have easily taken five steps to get one her goddamned self, but she didn’t. The phone cord just barely reached. I rolled back and put the envelope in her hand, but instead of a thank you I got a smirk and an eye roll.

I screamed all the way up I-465 and across Crawfordsville Road on my way home.

“WHY DIDN’T YOU FUCKING ASK, YOU MISERABLE SLUG?”

“WHY DON’T YOU TRY ‘PLEASE’ AND ‘THANK YOU’?”

“I HOPE YOUR FIFTH GRADERS NAIL YOU WITH A POISONED BLOW DART TOMORROW!!!”

Where was I going with this story? Oh, yes. That was the day I decided I needed a college degree.

***

But not one in physical therapy. English would do nicely.

I needed money for college too, so I applied for a full-tuition scholarship at the same time I submitted my admission application to IUPUI. If I was selected for the Sam Masarachia program, I’d be required to maintain a certain GPA and participate in social organizing classes and events.

Okay, I thought, deal.

That’s when I found out I could write. The scholarship committee called me in for an interview, and a few of them (there were like 12 people grilling me!) mentioned the strength of my essay. I don’t remember much of what I wrote, except that my final line was something like, “If you don’t award me this scholarship, I will still get my degree—it’s just going to take me a lot longer.”

Well, they awarded me one of those Sam Masarachia scholarships, and over the next three years, I read Saul Alinsky. I interned at Jobs with Justice and Indiana Women Work. I marched with janitors in downtown Indy while white men in expensive coats came out of buildings and glowered at me and my comrades. We chanted “si se puede” and banged on five-gallon buckets and marched in circles with our signs.

I was fucking hooked. And I found out most shitty things stayed the same because people with power didn’t know they were problematic. (Okay, some of them knew and didn’t give a flying fig as long as no one challenged them.)

So when you mash up “ye have not, because ye ask not” and “yes, we can” you get an activist for life. And when that activist gets fibromyalgia and runs into dismissive doctors, a broken healthcare system, fibro-deniers, and ignorance…

…she says, “Fine. I know what I need to do.”


This post is part of the Health Activist Writers Month Challenge (#HAWMC). If you want to learn more about the 30-day writer’s challenge or sign up, you can do that here.

Prompt 7: Tell us how you chose to start advocating for your condition.

A Letter to Myself about the F-Word

A Letter to Myself about the F-Word

I had a big day today. I left the house this morning to record a radio interview. It wasn’t easy, but it was worth the extra effort to put on real pants and comb my hair and talk about what it’s like to be me—a Spoonie with fibromyalgia.

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A puffy-faced, make up-less (but smiling!) Emily at WILL Radio this morning.

I got home, did some stuff for work, attended my first virtual meeting of the day, and then had to embarrassingly drop out of my second work meeting to devote my full attention to being sick.

But I’m feeling slightly better now, so I wanted to see if I had it in me to bang out my post for today’s #HAWMC prompt.

Two things you should know:

  1. I dug up some angry, rage-fueled posts from a blog I deleted, and then I control-veed my way to re-publishing them here and here (under their original published-on dates.)
  2. Because they are so closely related to today’s prompt, you might want to read them too…or first…or something.

Here we go.

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Dear Emily,

The guy who’s about to diagnose you is a real prick. He’s going to drop the fibromyalgia bomb on you after a trigger point exam that leaves you reeling in pain. Then he’ll hand you a brochure printed by a drug company, and walk out of the room for a few minutes to do god-only-knows-what.

Girl, this is your red flag. Drop this doctor like a hot potato and never, ever look back.

If you don’t fire him, he’s going to write you a prescription for Cymbalta without telling you that the withdrawal symptoms will make you wish you were dead—you’ll be sick, dizzy, and riddled with anxiety for weeks after you quit taking it.

Trust me. Cymbalta’s just not going to help you, and you’ll never be sure if what happened to your body in those six months was a result of the drug’s side effects or simply it’s failure to keep your condition under control. Don’t take it. It’s expensive. It will take your nerves completely offline and everything will be numb. You will feel like the shell a brave woman used to live in.

You’ll find better doctors. They’ll be booked out for months, and you’ll wait in the exam room for a long time before they finally knock on the door and walk in. But they will try. And they will listen. And it will be worth the wait. They won’t really know how to help you, but you’ll be confident that they want you to feel better. You won’t be fighting your body and the healthcare system and your doctors.

That’s something to hold on to on the dark days.

Don’t bother to go gluten free for eight weeks. It will seem like it’s helping, and then when you flare again your heart will break from the disappointment. And in the meantime you’ll eat sad, flavorless bread that molds unnaturally fast.

Go through all the tests—the hydrogen breath tests, the blood tests, the heart stress test, the x-rays, the ECG, the endoscopy. They’re all going to come back negative. You’ll be stuck with your crappy fibromyalgia diagnosis, but you’ll know your heart’s fine, you’ll know you don’t have food sensitivities, you’ll know you’re not suffering from RA, celiac disease, or cancer. Those are not bad things to be certain of.

Try the marijuana. It’s going to dehydrate you and turn up the dizzy dial like everything else does, but you will from time to time experience moments that are painless. You’ll sing random shit that makes Dan laugh, and the sound of him laughing will make you want to sing more random shit. You’ll love the world and everyone that’s in it. And sometimes you’ll fall into blissful sleep.

I know, I know. When you see what it takes to get your medical cannabis card, you’ll freak out and stress about the money before it’s even spent. You’ll wonder if it’s worth paying so much money for the privilege of fighting the State of Illinois’ unhelpful bureaucracy. But holy shit! Your friends will donate to a Go Fund Me campaign that pays for your card application and pays for an outreach group to help you cut past the red tape. You’ll be overwhelmed by the support.

When things get rough, you’ll remember that your parents helped you get a house without stairs. You’ll remember how your husband said, “Don’t ever hesitate to ask me for help.” You’ll remember how your friends and family encouraged you every time you were bold enough to share your story.

And you’ll go to bed with the hope that tomorrow will be better, and the assurance that if it’s not there we be people there to prop you up.

Love,
Your Future Self

It’s Funny Because It’s True

It’s Funny Because It’s True

For the record, this is funny. But damn if it doesn’t also just feel like someone’s punched me in the gut. How does it make you feel?

I would write more, but I’m flaring. (Yes, again.) And I was up way too late last night watching the Cubs win the World Series!


This post is part of the Health Activist Writers Month Challenge (#HAWMC).

Prompt 3: Find a quote that inspires you (either positively or negatively).

I Do What I Want

I Do What I Want

The first rule of blogging is there are no rules of blogging. At least not here. So I do what I want.

Even when I was younger and perfectly healthy, I had trouble sticking with my personal blogging commitments. A decade ago my grand idea of posting every day morphed into a reluctant acceptance that life is just too complicated.

Maybe just three times a week, I thought to myself.

And here I am ten years, five blogs, four jobs, and one chronic illness later finally accepting that all I can do is write when I’m feeling up to it. Hell, I might not even be able to complete this 30-day challenge.

I’m nowhere near as prolific as I used to be. In my twenties, I’d go from writing a term paper for my Organizing for Social Action class to drafting website content about funeral customs to writing a magazine article for nine-year-old kids to blogging about the funny, if inconsequential, things that happened to me.

Today I write for my 9 to 5, and then write a few blog posts a week—depending on how badly I need to access my “outlet” and how much energy I have left. I haven’t done any freelance work for well over a year, though God knows the extra income would be nice. And even at this modest pace I often feel like I’m stretching myself too thin, egging on my next flare.

The perfectionist inside me (the oblivious twenty-something that would read a post thirty or more times before hitting publish and want to just fucking die upon realizing a week after posting that she’d still missed a typo) hasn’t completely died. She spits and sputters to life occasionally.

I’m learning to embrace errors the same way I learned to embrace my shower chair and walking cane—slowly and stubbornly with lots of internal melodrama, until forced to admit there isn’t another way forward right now.

I guess overall my goal is to approach this blog as an act of self-care. That means no rules, no scheduled posts, no trying to drum up more traffic, and no feeling like a failure for posting a dud or going long stretches without writing.

I do what I want.


This post is part of the Health Activist Writers Month Challenge (#HAWMC).

Prompt 2: What’s the blogging process look like for you?

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