My body is built on a swamp.

Turns out, all healthy ecosystems require wetlands.

Hey, Friend.

May is Ehlers-Danlos Awareness Month, and I’m unmasking with intention. As an artist with the hypermobile subtype (hEDS) — and with a new platform for expression — I felt compelled to write about my experiences with this disease.

But I stalled. Analysis paralysis took over. Who is my intended audience? What if a hiring manager or studio owner reads this and doubts my abilities?

Then, I recalled advice from a recent professional development session. To paraphrase, if people can't see the benefit of my story, they aren't my audience. So here I am, setting aside the polished, professional mask to embrace a little vulnerability. Maybe it’ll resonate. Perhaps it’ll connect me to people who’ve been waiting to feel seen, too.

What I Want to Share Today.

hEDS is a genetic connective tissue disorder that affects joints, muscles, and organs. I say, "my body is built on a swamp" because there are abnormalities in my collagen, the protein that provides strength and elasticity to my body's tissues. In other words, my bones feel as if they are scaffolded on muddy waters.

Our community refers to each other as Zebras because, like the stripes of the animal, each of us has a unique expression of the disease. I love this imagery; however, I relate more to a swamp. My disease and I are not a singular species. We are an ecosystem.

My ecosystem includes joint and muscle issues, GI disease, and endometriosis (plus ten other conditions). I can share my experience with hEDS from several perspectives. I could share a few gruesome hospital stories, a deep dive into my conditions, or outline the diagnostic journey.

However, I don't want to talk about history. I want to talk about how I navigate the disease and how it informs my relationship with my career today.

If you read my last post, you’ll know I’m new to LA, but my heart (and dance company) is in Nashville. I’m in a “winter season” between projects, quietly listening to the dormant seeds, wondering which ideas will sprout.

So, in keeping with the theme, here’s another moment in time — a day in the life of someone who isn't well, but still has a lot to offer.

A Typical Wednesday

• Morning (9 a.m.) I wake up late most mornings. It takes about an hour to eat breakfast and see what mood my intestines are in. Today, I woke up at 7 a.m. for a school meeting, and my tummy is quiet. My knees hurt from ten minutes of ballet yesterday, but my shoulders haven’t popped out of place... yet.

  
  

• Mid-Morning Computer Time. I sit on the couch and write grant proposals, project plans, marketing materials, and spreadsheets if I’m feeling sassy. This is when I feel most confident, creative, and focused.

  
  

• Early Afternoon Movement Practice. I take a class or enjoy movement at home. I’m managing classes better now than when I first moved to LA. I’m decent, but the competition is fierce. I’m torn between proving myself and preventing injury. Yesterday, I expressed a low point with my husband: “These people are strong, tenacious, and unstoppable. Watching them, I feel my joints slide and my skin break." A somatic reminder of how swampy my body feels compared to other artists. I’m learning to regulate and advocate in the classroom again. Being a student is so much more complicated than being a teacher. Comparison is the death of creativity.

  
  

• Late Lunch. I eat as little and as late as I can to keep my stomach quiet, which is at odds with the demands of my physical training. I pop some ibuprofen while I’m at it. This food-to-activity ratio is improving. Presently.

  
  

• Afternoon School Pickup. I take a brisk walk to pick up my child. Once home, I cling to the railing and pull myself up the 18 steps to our apartment. I call this newer symptom "Flu Legs." I’m considering mobility devices for bad days.

  
  

• Evening. The rest of the day is a mix of childcare, computer tasks, errand-running, and quality TV. I want to make more friends.

  
  

• Nighttime. I take several medications. I've been experiencing fewer muscle spasms lately; I think my folate levels are back to normal. Falling asleep can be a challenge, but it happens eventually with the help of audiobooks.

  
  

Unmasking the Moments

Admittedly, I was sad when I started writing about my day. I look OK, but I don't feel OK. I always want to feel better, accomplish more, and prove to myself and others that I can handle it all. However, I feel a great sense of relief in sharing these moments.

This process of intentional unmasking doesn’t eliminate my symptoms, but it helps me tolerate the discomfort and shed some shame. Unmasking puts me in the moment, allowing me to accept the present and accommodate accordingly.

I don't have to feign perfection; I can make time to tend to the discomfort. I also don't have to turn my back on my career because it's sometimes at odds with my health.

But What About My Career?

Yes. I’m still thinking about future employers and collaborators who may read this journal entry. I'm new to this advocacy space, and part of being an advocate is being brave.

I'm listening to the MeSsy podcast with the brave Jamie-Lynn Sigler and Christina Applegate. Jamie-Lynn just told guest Conan O'Brien that she stopped pretending to be well because she wants employers to know she’s competent, despite and also because of her Multiple Sclerosis.

Talk about cosmic timing. Yes. People with disabilities have value in all workplace ecosystems, especially the arts.

It's EDS Awareness Month, so what do I want folks to know? I want to highlight the unique contributions I provide to my community of students, clients, collaborators, and coworkers.  I know my fellow Zebras carry these traits, too, and so much more. It's essential to remind ourselves that challenges often come with valuable gifts. Let's explore how.

How EDS Informs My Work

• A profound sensitivity. My body blesses me with little hints before major flares, and over time, I've become attuned to the quiet signals both in and out of body. Student or client, I sense a change in the wind before most. This quality lends itself to adaptive and inclusive practices, fostering deep trust within my community.

  
  

• Details. Details. Details. To maintain my physical health, I need to be disciplined in my approach to exercise. Good alignment isn't good enough; precision is essential to avoid injury. This level of intentionality is also evident in other aspects of my work. Every choreographed piece, class plan, and project is carefully outlined and thoroughly tested to ensure its success.

  
  

• When I commit, I commit 100%. I have decades of experience managing jobs that conflict with my health. Waking up at midnight to catch a four-hour flight, followed by an 18-hour production day, only to call in sick the next morning? I’m not doing that again. So when I say "yes," it is an informed commitment. My "yes" means that the outlined expectations align with my healthcare needs, creating a sustainable agreement.

  
  

• Boundless creative problem-solving. This disease rewrites plans constantly. A last-minute abdominal surgery leads to an innovative rigging plan, eliminating the need for manual lifting. I’ve learned to adapt to every curve. There’s always a Plan B, C, or D to a project. Oftentimes, these solutions are more creative than the original!

  
  

• You’re safe with me. EDS can make it impossible to hide a bad day. But guess what? We all have days like that. When moments get tough and you’re afraid to ask for help, you can ask me, and I'll be there for you.

A Necessary Swamp.

Some bodies are built on granite, steadfast and resistant to erosion. Some bodies are deeply rooted, allowing strong trunks to grow branches and reap the benefits of sunlight.

Mine is built on a swamp. It’s unstable and temperamental. It’s also an adaptable habitat that welcomes a variety of experiences.

Our delicate human condition requires all landscapes to thrive. We need each other for balance, perspective, and a change of scenery. We are all of value.

Anyway. I gotta think about dinner now. But first, a steamy salt shower for these knee caps.

With Care, Sarah

*Critical Note: I do not believe people with disabilities are less “valuable” when they can’t work. Everyone deserves to be cared for, supported, and celebrated by their community, regardless of their contributions to capitalism.

Special thanks to my fellow Zebra, Lindsay Graham, Esq., for expanding my swampy metaphor.