I just had a thought that I really needed to type out. I’ve been in this high state of emotional conflict lately where I feel trapped between showing who I am and owning it, and shying away from it out of fear of how I could be perceived. Specifically regarding EDS. EDS has affected me my entire life. But I always put my head down and stayed quiet through the pain. I took the proper medications and did the right physical therapy, but I hated talking about it and cringed at the term “chronic illness.” How could I possibly be ill if I am competing at national levels in the pool? How could I be both tough and acknowledge this illness at the same time? I always felt that having EDS was something that should be only mentioned if absolutely necessary. Kept on the down low. A secret.
With the exponential increase of intensity in training I have experienced since coming to college, my body gave me no choice but to start listening to it and speaking up for myself if I wanted to continue to have success in the pool. The first couple months of my freshman year consisted of constant flareups that I just could not avoid talking about if I wanted to remain the athlete I always was. That “toughness” I carried with me every day had to show up differently, in the sense that I had no choice but to be brave and vulnerable (ew, who wants to be vulnerable?). I began talking to my athletic trainer and my coaches, and finding resources online that helped me understand how my journey might have to look different from the rest of my teammates if I wanted to continue growing as an athlete. Over the past year I have started to learn so much more about my condition and found platforms online that have made me feel so seen and so understood. I started becoming more open to the idea of taking ownership over my condition. Being confronted by these flare ups forced me to start listening to my body and gain more confidence in myself as a zebra (EDS patient). I spent so much time searching for social media accounts run by people just like me, and felt an overwhelming sense of relief and comfort in the fact that I am not alone, most certainly not any less tough for having a chronic illness, and more importantly, for speaking up about it. These accounts inspired me to want to do the same for others (the ultimate purpose of this section of my blog). But this new confidence still came with internal conflict that I am currently struggling to shake. This might sound hypocritical, but as an athlete with EDS, part of me still felt insecure once I started to post more about my experiences. I still find myself retreating back into my younger self who feels like admitting what I go through makes me viewed as weak or self-pitying. So despite everything I just said about my newfound confidence, I still wonder: does posting about my struggles make me look like I feel sorry for myself? Because that is absolutely NOT the goal. And I know deep down that I could not be further from weak. And I am so sorry if you thought I might have an answer to this conflict but I don’t. But as a music fanatic, I did have a thought that comforted me. I thought about how music artists who write and sing about depression and other mental health struggles might be seen as being “woe is me” for being open about the battles they fight. Taylor Swift, the queen of breakup songs (and so much more but that’s not the point), uses her voice to express her heartbreak through music. And though some may see these artists as self-pitying or just outright negative, they are truly doing God’s work for the people who relate. At the end of the day, having someone to relate to can be a game-changer, a life-saver, or simply just a sense of comfort that you are not alone. And that is my goal here. On this blog, social media, and in the world in general.
Okay, I need to go to sleep. Time to dream of a world where zebras don’t everfeel like they have to paint over their stripes!
Posting poetry is scary. But it is also something I have always dreamt of sharing. Poetry is art. The words are the paint, the pen is my brush, and this section of my blog will serve as the gallery. I hope you enjoy :).
This first poem is about the contradictory expectations placed on children growing up and trying to maintain the ‘good kid’ persona.
Be Respectful; be polite; break the silence by Elle Noecker
Be respectful; be polite; be quiet; raise your hand when you wish to speak; ask permission to use the restroom; stand in line, single file; don’t laugh too loud; make sure to show some enthusiasm; don’t smile too much– this is serious; would you please look happy for once?; respect your superiors; respect your peers; don’t talk while I talk, that’s disrespectful; don’t talk so much, that’s annoying; why are you so quiet?; “I wish your daughter would contribute her ideas more in class;” incorrect; give your classmates a chance; Be respectful; be polite; be quiet; be friendly; be social; make friends– a lot; take people under your wing; get along with everyone; be a friend to everyone; Okay, but where are my friends? Pick a partner for this project; Oh no. Please no; Make sure all group members contribute equally; Don’t do too much; Don’t do too little; Don’t take up space; I wish you would be more assertive; Be respectful; be polite; be quiet; Speak up, I can’t hear you; please don’t talk over me; just tough it out; the world is unforgiving; learn it the hard way; why didn’t you ask for help?; don’t hesitate to reach out; But you never respond?; Why didn’t you tell me sooner?; YOU NEVER REPLY; you’re so mature for your age; you’re an adult, it’s time to act like one; Be respectful; be polite; be quiet; You’re so humble; Have more confidence; stick up for yourself; stick up for others; hey, don’t be rude; learn to take a joke; be yourself; they might not like that; don’t care what others think; make sure to impress everyone; Wear what you want!; not that; do what makes you happy; maybe this isn’t for you; prioritize yourself; be selfless; if you say “no”, you will hurt their feelings; you need to learn to set boundaries; Be respectful; be polite; be quiet; always be honest; you should have kept that to yourself; if you stay true to your values, the right people will find you; Where is everyone?; think before you speak; you’re overthinking this; take a well deserved break; you should have been more productive; alone time is important; you’re so anti-social; make good choices!; learn to live a little; Repeat steps until–; until what? I lose my mind!?
Happy EDS/HSD awareness month to all zebras out there!
Here is an overview of my story to raise awareness about EDS and help fellow zebras feel less alone <3.
A horse and a zebra in one photo! One of my first of many childhood hobbies was horseback riding.
Close your eyes and imagine the sound of hoofbeats galloping along Earth’s surface. Thump, thump, thump. Now allow your mind to paint a picture of what creature is creating these rhythmic drum beats reverberating through your brain. What animal do you see? I don’t even need to ask. You definitely see a horse. Probably something along the lines of a majestic stallion with a shiny chocolate-colored coat and a black mane trailing behind in the wind. Bold of you to just go ahead and assume it’s a horse. What if the hoofbeats are instead, those of a zebra?
2006
Mini me as Minnie Mouse!
Baby’s first UTI!
The doctor informs my parents of their infant daughter’s first urinary tract infection. Unknowingly, the beginning of what would become a recurring problem. I am basically a newborn. And the cause of these chronic infections is a mystery.
2010
One of my first days of kindergarten!
I am in my kindergarten classroom, sitting in front of a red, kidney bean-shaped table sticky and stained with purple Elmer’s glue and graphite. We are practicing writing our names. I pick up my pencil by placing it between my thumb bent backwards and my four remaining fingers stacked on top of one another. I smell my teacher’s coffee breath as she peers over my shoulder in examination–invading my personal space bubble. “Elle, sweetheart, that’s not how you hold a pencil,” she gently instructs me, manipulating my fingers around the yellow Ticonderoga. Once she is satisfied with my pencil-holding technique, she moves on to evaluate the student beside me, declaring that this particular student has a “beautiful” grip on the wooden stick. Feeling as though the pencil could drop from my hand at any given moment, I attempt to print the letters E-L-L-E as neatly as I can on the lined paper below with my newfound pencil grasp. After excessive effort and attention to detail…it looks awful. Nothing more than scribbles on a page. Making sure my teacher isn’t watching, I retreat back to my original, instinctive pencil hold and try again. This time, my name turns out perfect.
2014
One of my many ‘party tricks’ (a split without any practice or stretching beforehand).
“Do it again!”
“Everyone, look at Elle!”
My third-grade classmates crowd my desk as I perform for them like a circus act, per their request. But I don’t mind too much. I find their fascination funny. Though I don’t necessarily love having forty-two eyes focused on me, even at eight years old, I take pride in being unique.
“Okay, okay. One more time!” I comply as I hold my hands behind my back and twist my arms up like a soft, doughy pretzel over my head. My classmates gawk at me in disbelief as they try to replicate my movements with utter failure to do so. I laugh. I have a superpower.
2015
I loved every moment of my short-lived gymnastics career (though my back hurts just looking at this photo)
“I’ll be right here if you need me!” Mom assures me as she sets me free into the most exciting playground a little girl could imagine– gymnastics practice. I thrive here. I am a natural at this sport. We warm up as a team by stretching and I am the only one who can do a successful split on the first try. The other girls are jealous. They struggle to touch their toes.
Now it’s time to practice our backbends on the floor. The instructor watches us one by one and I am eager for it to be my moment. After an eternity of waiting my turn, I confidently step forward and fold backwards, planting my palms confidently on the ground. I walk my hands inward as far as I can go, and just barely miss touching my own heels from upside down. My lower back seemingly yelps at me in a sudden sharp pain, and my tiny wrists feel as though they could snap under the pressure of my body weight. I ignore this discomfort because my instructor is impressed; astonished even, as if she has never seen a flexible gymnast before. But behind my proud smile I begin to question: Am I a natural at this? Or am I just incredibly unnatural?
2015 (continued)
Mom hits send on a slightly mortifying email to my school teachers:
“Due to medical purposes, please allow Elle to use the restroom as often as needed.”
I am in elementary school. I still can’t control my own bladder.
January 2016:
My first violin lesson when I was 6
“This feels wrong,” I explain to my violin teacher as she tries tirelessly to get me to fix the way I hold my bow when I play. I get deja vu because suddenly I am back in my kindergarten classroom learning how to hold a pencil (and failing). She says I have a “death grip” on the instrument but the problem is, I can’t seem to hold on to it any other way without dropping it. The date of my first music festival is approaching, where I will be playing a solo to be evaluated and scored by a judge. “If you don’t fix your bow hold, the judges will take points off of your score” she threatens. She instructs me to “just relax” my hand– if only it were that simple. I try to hide my developing tears of frustration behind the music stand.
A few weeks later:
I definitely had a special talent for violin but faced constant criticism for tense technique when playing.
My heart is about to pound through my chest as I anxiously receive the paper with my score:
“Dear Elle,
Thanks for playing for me today! You have such a strong sound– it is lovely!
I would suggest working on your bow-hold, as you look rather tense.”
The bottom of the page shows that two points were deducted from my score for poor technique.
If it sounds so “lovely,” then why does it matter how it looks? I think to myself.
The following day arrives and I shamefully hand over the paper to my teacher. She peers over the rim of her glasses as if to say “I told you so.”
March 2016:
3:30pm, after school.
Tears.
Tears.
And more tears.
I cling to mom’s arm as she helps me stumble to the red couch in the living where I collapse and then proceed to drown in the salty tsunami pouring from my eyes. Mom crouches on the floor and gingerly removes the bandage wrapping from around both of my ankles to reveal a red, purple, and blue display of swelling on each.
“I can’t do it anymore” I utter through my heartbroken sobs. At only eight-years old, I declare the end of my own gymnastics career. A sport in which I thought I had a real future in.
Despite my devastation, I am not completely defeated. I still have swim. A sport I picked up at age three and never dropped because I easily excelled at it. A sport in which I knew deep down held a bright future for me (more so than gymnastics, let’s be honest). A sport that didn’t cause me pain–at least, nearly as much.
Late spring 2016:
Smiling through the pain and uncertainty, notebook in lap while waiting for the doctor during one of my first major joint flare-ups. (writing has always been an outlet for me).
Mom holds up her phone to my doctor, showing the photos she took of my ankles that day on the couch. It could not be more clear that something is wrong with the way my body responds to strenuous activity.
I can’t jump on the trampoline with the neighbor kids without my ankles blowing up like black and blue airbags.
I can’t run a 5k with my family without debilitating knee pain.
I can’t do the things I love most in life without suffering consequences from the body I live in.
“We have had some major bladder control and infection issues from the time we were born, is that right mom?” asks my pediatrician. Mom, perplexed at the seemingly unrelated question, nods her head.
“Your joint flexibility is easily a nine out of nine Beighton score–the highest measurable mobility in a human and you have chronic bladder problems. I think I know exactly what this is. You have Ehlers-Danlos Syndrome.”
Ehlers-what?
Ehlers-Danlos Syndrome (EDS): a connective tissue disorder causing irregular hypermobility of the joints, commonly affecting the function of organs such as the bladder.
“Fortunately for you, swimming is the most perfect sport for someone with your condition. Because it is low impact and non-contact, you can continue swimming as long as you’re mindful about caring for your symptoms” my doctor adds.
The sense of validation that floods my heart is overwhelming. Finally, I have an answer. Finally, I feel as though someoneunderstands that I am not just a complainer because I say I am in pain. What I am, however, is an outgoing, athletic, ambitious young girl with an underlying health condition that no one besides myself can fully grasp the reality of.
I have always been a highly active childhood before and after my diagnosis. The hyper-mobility in my elbows was so obvious in my days as a dancer!Thankfully, this little swimmer could continue to do what she loved!
Present Life As a Zebra:
Since that day I was diagnosed in third grade, medications have occupied just as much space as books on my nightstand. I no longer jump on trampolines; I no longer run 5ks (or run at all for that matter); I avoid late nights so my body can recover from the previous day; I have fought for accommodations in the classroom to assist me with my atrocious–but permanent– pencil hold; I have spent hours upon hours in waiting rooms and physical therapy just to have orthopedic doctors suggest I quit swimming for my shoulder health (I was only twelve at the time, nothing could make me quit), or get surgery to repair the broken down tissue in my knees–both options which turned out to be entirely unnecessary. And I have learned to embrace the quirks and characteristics that make me beautifully unique. The same quirks and characteristics that made my younger self believe I have a superpower (which turned out to be a chronic illness, but who’s to say they can’t be the same thing!)
Oh! I apologize. You’re probably still wondering how on Earth a zebra could possibly relate to flexibility and poor bladder control. Remember how I said my qualities make me “beautifully unique?” Well, that’s the idea. The zebra is the universal animal that represents EDS patients, as we can almost hide in plain sight–at a glance, looking like the common horses that surround us; but at a closer look, have attributes that make us stand out from the crowd; and well, just a little different from the rest.
My EDS journey is a book that continues to write itself every day. I am still learning how to manage my symptoms, still learning about the various types of the condition and experiences of other patients; and most significantly, still learning to advocate for myself and speak up for my medical needs–in other words, not shying away from showing my zebra stripes in a horse’s world. My symptoms stretch (no pun intended) far beyond a bendable body and brutal bladder. Every day I combat chronic fatigue, headaches, dizziness, sleep problems, muscle tension, and often a sense of isolation feeling like no one understands me–but how could I expect them to? Despite the daily battle with my own body, I try to view my circumstances as a gift, instead of focusing on the ways they restrict me. I firmly believe that my natural mobility has contributed to my success in the pool, giving me an edge on my less flexible, commonly constructed competitors.
My swimming career continues today as I compete collegiately for the University of Georgia at an athletic level that I once only reached in my wildest dreams. Though my childhood experience has not necessarily been typical, I truly would not choose to change it. I have learned to love who I am (for the most part–self love is a process). I find so much value in personal authenticity and proudly embrace my identity as the local contortionist who can’t go an hour without running to the restroom.
We all have attributes that make us unique. We all have superpowers. And if being a zebra has taught me anything, it’s that it doesn’t matter how you hold your pencil. What matters is how you write your story.
Achieving my childhood dreams while always prioritizing my well being (stabilizing knee-tape for prom is just a small example of the ways I have to look out for my body every day ;)).
Author Note:
As mentioned before, this life-memoir only represents a fraction of my EDS journey, capturing some of the most defining moments. Writing this post was the most personally liberating experience, being the first documentation of my life as a zebra outside of doctor’s notes and medical papers. For the first time, I felt a sense of true ownership over my stripes and a weight off my shoulders. Thank you for reading, I am so grateful. Stay tuned for more content!
Chronically Elle 