Op-Ed: Rare Disease Day: How my conditions shaped me to be a community storyteller

What do you want to be when you grow up? I bet you’ve asked and answered that question more times than you can count. Did you grow up to be what you wanted? I hope, like me, you became everything you thought you’d never be.

I became a storyteller. I am who I am because of my rare diseases and conditions, and the unpredictability that chronic illness comes with. I am everything I never thought I would be, and it’s all for the better.

Unconventional body

In my youth, (I say this as if I am not in my early 20s), prior to disease completely booting me from the driver’s seat of my life, I wanted to be an art teacher. As the daughter, niece and relative of numerous educators, I wanted to shape young minds. I wanted to be that figure that you think of when you think of your favorite teacher. Go ahead, think of that educator. Yeah, I wanted to be them.

As middle school snuck around, I was plagued with waking up every morning to my throat being swollen shut and my lips double their normal size.

Choosing life’s path

I went from a straight-A, All-American-elite-club-volleyball-player, two-instrument musician, and member of every school club and extracurricular activity kind of student, to a frequent flyer at Ascension All Saints’ Emergency Department. Ask the security guard, I should have been given my own parking space there. I’d be lying if I said I wasn’t also on a first-name basis with the South Shore Fire Department as well.

I became everything I thought I never would be: I became disabled.

I missed 50% of my junior year in high school. And senior year? Let’s just say my body had senioritis.

I still wasn’t who I thought I’d be when I’d grow up.

At this point in my life, I was encouraged to drop out of school by a neurologist, because he didn’t see a point in me pursuing an education. He didn’t understand why I’d continue attending school, let alone how I could even do so when I was actively dying and/or trying not to die.

I did it, twice

“Nevertheless, she persisted,” is the phrase that I wrote on my graduation cap. I did it. I came in 10th in my class and I didn’t cut corners. I did the work. From the waiting rooms of the Mayo Clinic, hospital beds in emergency rooms stretched across southeastern Wisconsin, and in between nebulizer treatments, injections, therapies, appointments, infusions, meltdowns, and more. I did it.

I still wasn’t who I thought I would be, but I was pushing on.

Next stop, college. While most kids dreamed of college parties and waking up in college dorms, I just hoped to wake up, breathing.

Continuing on, I often thought about who and what I’d be when I’d grow up.

Onto college

After high school, I became a Redhawk. I never thought I would attend a college located nearly in my backyard. I never thought I would, but I did. And I’m so glad I did. Thank you, Gateway Technical College.

An intern

During my time learning what professional communicators learn how to do, I was an intern at the Racine County Eye (RCE). Landing this role was a collaborative effort between community agencies and disability resources. I have no idea what it’s like to be a “normal” person at a “normal-grown-up-type job,” but the local news world was a whole lot different than being a camp counselor or caregiver.

It was nothing like what I thought I would be when I grew up.

I finished my degree in three years. Sometimes I still struggle with the fact that they say it’s a two-year degree. No, it’s an Associate’s Degree, and three years is pretty good for someone who could barely stand upright in college. “They don’t put a timestamp on your diploma, Emma,” I would tell myself. “Not too shabby for a young, willing mind like mine, with an unruly, less-than-physically-functioning body.”

Joining the team

Throughout my schooling and growing up, my disability never took a break. It took no days off and it forced me to learn to be who I’ve become.

I like to say I’m part-time on paper giving my full-time effort. Because for me, as someone who is disabled and collecting Social Security, this is my full-time.

It’s been just over three years and I am still typing away, reporting the local happenings, and even making bi-weekly debuts on TMJ4 News at 4, which my grandma thinks is the best thing to happen since sliced bread.

I’m still not grown up and I think about one thing very often, because you know, at 23 years old, you land one job and you think you’re grown up, right? Did I grow up to be what I thought I would be?

No, I didn’t. And I’m still growing.

My rare diseases and some not-so-rare conditions dictated that path for me.

All of those diagnoses, plus 77 documented allergies, determined that I was:

• a listener
• an advocate
• a voice
• an outlet
• and a storyteller.

My rare diseases taught me about communication. It kick-started my blogging hobby. It engrained the importance of photos, timestamps, and other tools I use every day now as a writer.

I’m not your typical 9-to-5 business professional: pencil skirt-wearing accomplished graduate of some prestigious journalism school.

My rare diseases have engulfed my life. In doing so, I became everything I never thought I would be. I’m also not the standard image of a journalist, but because of my rare disease, I have a unique lens. In light of my darkness, I found purpose. I found a reason for writing. I became a vessel for others to see things they may not have seen, and in a light that they may not have been able to see before.

“It takes a village” is a quote that runs through my mind every time I make it through a flare. The Racine community stood by my side as rare diseases shaped my life. It’s the community that kept me going, and it continues to do so even now.

Now, I have the honor to be a storyteller in the community, for the community. I have the opportunity to share your stories, because you stood by me as my story was being written. It was this community that empowered me to share my story, and now I get to connect with others to do the same for them.

Rare Disease Day resources