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.

***

emily
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.

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?

Power to the Patient

Power to the Patient

Last month marked the second anniversary of my fibromyalgia diagnosis. And even though the ICD code has been following me around for a while, I’m still having a hard time pinning down what that means for me, exactly.

I haven’t yet developed an elevator pitch for talking about my fibromyalgia because it’s just too damn complicated to sum up. The next best thing, it seems, is to just blog about whatever I need to put “out there” whenever I’m able and inspired.

Writing about my condition and my day-to-day happenings helps me sort out my own thoughts and feelings while giving me an opportunity to honestly answer a question I get asked all the time.

How are you doing?

Though the words that come out of my mouth might say otherwise, the reality is that I am never OK. There’s always a caveat. This is where I get to talk about the caveats.

Blogging has other advantages too. It lets me vent about what’s wrong while giving my husband a break from the sometimes hourly updates about what hurts and what is and isn’t working right. (Why is no one ever as excited as we are to have a good poop?)

It serves as a sort of patient log, helping me identify patterns and theorize about the cause of my flares. And sometimes it helps me accept that there is no pattern or discernible cause, that my condition just is.

My blog connects me to a large support group of other Spoonies and fibromyalgia patients, giving us opportunities to discuss what helps. Because, let’s face it, chronic patients are perpetual targets for anyone with a pill, a book, or a scented candle to sell. We have to look out for each other.

And it’s that “looking out for each other” thing that really motivates me to write candidly about my experiences. (Yes, even about medical marijuana and IBS.) Don’t get me wrong, this blog is for me, first and foremost. But I also want it to help other patients find ways to talk with their friends, family, doctors, and coworkers about stuff that’s next to impossible to put into words.

I want these conversations to meaningfully change our healthcare system, change the way we view and accommodate disabilities, and improve the lives of every patient with chronic illness.

Because laughter is cool and all, but empowerment is the best medicine.


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

Prompt 1: What drives you to write about your health? What do you want other Health Activists to know about your condition and your activism?

Pin It on Pinterest