When first diagnosed with Ehlers-Danlos Syndrome Hypermobile Type (hEDS) I was confused. Not only was I confused with my own identity and my place in this world, but I had just found out that the cause of my moderate to severe chronic joint pain and joint instability was a rare and under diagnosed connective tissue disorder. I had never even heard the name Ehlers-Danlos until one of my teachers (who was also the liaison of my Individual Education Plan or IEP) noticed my bulky knee braces and hypermobile elbows. Because of her observations, I was able to find a diagnosis after three years of misdiagnoses. The average rare disease patient is undiagnosed for nine years before an answer is found. Three years for me was a blessing, but what was sixteen-year-old me going to do with a new diagnosis? I desperately needed a creative outlet.
I was introduced to the world of spoken word poetry by a friend my freshman year of high school, however, it was not until the beginning of my junior year that I got a diagnosis. I then wrote my first poem about Ehlers-Danlos Syndrome for the Topsfield Fair slam, titled “Scrapped Stripes”. This family friendly awareness poem was based off the infamous phrase taught to medical students, “When hoofbeats are heard think horses, not zebras.” With a couple months of editing and hard work, “Scrapped Stripes” was able to be used at Louder Than a Bomb, a poetry competition which started in Chicago and is now nationwide. That poem was only the beginning of my disability activism through words.
Since then I have written poems about flare days (“Flare Day”), migraines (“Hurricane”), mental health (“Hacked Hell”, “Hazards of a Miner”, “Asylum of Cards”, “Love Notes in Lunch Boxes”), positivity in disability (“Fan Mail to Barbara Gordon”, “Cripple Swag”, “Acceptance Letter”) and even about healthcare (“Dear Senator Warren”, “Letters From America to Insurance”). With each poem I write comes the energy to create more poetry. It’s like harnessing creative juices as if they were water and using them for energy, or in this case, activism. Passion comes from life experiences and from the heart. I am currently putting together a chapbook titled The Anatomy of a Zebra which will showcase a great chunk of my poetic reservoir. For now, here are just a few examples of how I use my voice through performance poetry to advocate for physical and mental health.
Badum badum badadadum
When you hear hoofbeats, think horses, not zebras,
Horses are more common than zebras,
The science of the unknown is still science and zebras still exist, but most people have never seen a zebra in real life , so why should you believe Mulder and think otherwise?
It’s all you know.
So of course folks are going to think that zebras don’t exist,
But that would mean I don’t exist.
They’re calling me a unicorn,
an animal that was left off the ark for a reason:
Because they are lying hypochondriacs,
Always telling tall tales about their long list of symptoms that rotate daily, exaggerating fake maladies.
To them, a subtle tap is like a knife thrust
Insulting us zebras who ACTUALLY have those symptoms
Their horns continuously grow after each word they say like Pinocchio’s nose for each lie that leaves their loose lips
I AM NOT A HYPOCHONDRIAC
I may be rare but I am very real
I am screaming at doctors to look for zebras like us
But of course we get put out to pasture because horses are more common and we are mistaken for being klutzy thinned skinned unicorns: fictions.
I am screaming EHLERS-DANLOS SYNDROME, a disease where my collagen refuses to work properly
And you still assume that my collection of subluxations, bruises, and cuts are because my father abuses me until I am a black and blue rag doll with stitches coming undone when really I just tripped on the stairs at school
You still think that I am a hypochondriac because there is no possible way I have a chronic illness when I look just like you,
No way I can be ill because I am out living life and not hanging from a noose of wires, tubes, and monitors.
Yes I know that I am a contortionist in the Cirque Du Soleil
Acrobatics may seem like fun, but it hurts
Yes my skin is really a velvet canvas painted with brush strokes of bruises and scars
Yes my body is glazed with fatigue like a Christmas ham gone wrong.
And yes EDS is a real condition
I did not make that up.
Even if doctors need Google to understand it.
Wikipedia being the instruction manual for the cheap broken toy called me.
I wish that they could just understand that I am not a fraud but a human being who happens to have an invisible illness.
An illness that doesn’t define who I am, but teaches me how to be strong.
There will always be wolves cosplaying as sheep
And I will have to fight them off if I want to survive
Badum badum badadadum
Hey look mommy!
Wow, you’re right it is a zebra.
And that’s one bad ass mother flower fighter right there.
I am the epitome of everything beautiful
Awesome rushes through my veins
And I have never felt so radiant
The secret to this youthful glow?
Ehlers Danlos Syndrome
A chronic illness
A silent ticking time bomb is the key ingredient in the making of this sexy badass
I see you
I hear you
I know you’re jealous of my cripple swag and the way I walk the halls as if it was a cat walk
My cat walk
Because honey, I own this penguin waddle
I know you envy that I have in my possession the key to the elevator
So I can get to my classes fashionably late and in style
And teachers don’t care if I have a pass or not
With a wave of my key they nod with a smile
I am worth interrupting class for
Like Pavlov’s dogs you drool when you see me
Because my physique is the meat you’ve been craving to eat
Skin velvet soft to the touch
Beautiful almond eyes with a touch of blue sclera to accentuate my grayish blue irises
My double jointed skeleton sweeps you in like a siren catching its dinner
Knocking you unconscious with every snap, crackle, and pop
You only dream of surviving being in bed with me
My glasses and orthotics are fashion accessories
Complementing my trendy attitude
Don’t get me started on my perks
Preferential seating at every single concert
First class treatment
Wishes coming true by the rub of an oil lamp
The nurses know me on a first name basis
Because I am just that damn popular
So I dare you to call me worthless one more time
Tell me I am a burden
Because I am not
I am just a package too awesome for your dirty hands to handle.
My bone marrow is a sponge seeping with fire ants pinching my nerves in synchronization to my
Overworking muscles and tendons compensating for bones who slack off and leave the work for others to finish
The 9 to 5 agenda need not apply to them
Joints that are made of rice krispies
Just add milk to hear the snaps, crackles, and pops of pain and dislocations with each extension
The song of my people plays loud inside me
Swaddled in barbed wire
Steel spokes scraping my skin
It demands my full attention like a tyrant overruling my body
And to overthrow the government with focus would just be blasphemy
I just want to focus
Have my mind analyzing the board and
understanding the lecture
But only my eyes seem to want to engage
My brain choosing to inflate with oxygen like a balloon instead of listening just to be sucker punched repeatedly by small laughing children
Snickering at my inability to function
My head too heavy for its pedestal
Wanting to detach from its velcro mount so it can roll freely on the floor
Weights hanging off from my arms like ornaments on Christmas tree branches
Lighter ones on my shoulders leaving the heavy meaningful bulbs for the end of my fingers
My stomach braiding ropes to support my spine so it may be used as a punching pad for training MMA fighters
Claws clenching down on my ankles and thighs to keep my leg stable as a saw carves around the kneecaps
My flat footed foundation deemed weak,
Allowing for my garbage body to crush my toes
Yet you call me a lazy millennial for closing my eyes
I am not lazy
I am a worker bee
Going to school
Pushing through constraint seating
Playing with words
Playing with cameras
Taking care of my broken body
The day I stop working is the day I stop buzzing is the day I stop breathing is the day that I die
And though I can’t focus
I refuse to die
About the Author
Hana is a 19-year-old college student with Ehlers-Danlos Syndrome & Co who uses her passions of slam poetry, photography, videography, writing, and music as a platform for self advocacy and disability activism. She is a strong believer in removing negative stigmas of disability and spreading awareness. As a new member of The Unchargeables Twitter team, Hana is excited to get to know all the chargies and help make a difference in this world.