My name is Danaë. A handful of years ago I received a traumatic brain injury via a concussion, it changed my life in a variety of ways.
Migraines, dizziness, nausea, trouble concentrating and remembering; I was overloaded with all the hospital stays and doctors appointments. I tried countless treatments and endured a myriad of tests, yet we had nothing to show for it. Most doctors dismissed it as Post Concussive Syndrome, but something felt off. It wasn’t just the TBI, I could feel it. Then one day I passed out, and the pieces started to fall into place.
One day in January of 2019, I was diagnosed with a form of Dysautonomia called Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (POTS). Dysautonomia is a dysfunction of the autonomic nervous system. That’s the system that controls the subconsious things your body does. Breathing, heart rate, blood pressure, even digestion. Anything that falls under “your body does it for you” can be affected. Some people, like me, have intestional dysmotility or parlysis. Most have problems with high heart rates when changing potitions, thats the tachycardia in POTS.
Before the switch was thrown and my life track rerouted, I used to be in colour and winterguard. I still love it dearly with my whole heart. But a brain injury and a disorder that causes you to pass out doesn’t quite mix with tossing 6 foot metal poles in the air on a football field all afternoon. Luckily I can watch Clash of the Corps on Amazon Prime when I need a DCI fix.
The same day I was diagnosed with POTS, I was hit with two other diagnoses. My life was rerouted yet again. I was diagnosed with a connective tissue disorder called Hypermobile Ehlers-Danlos Syndrome and an autoimmune condition called Mast Cell Activation Syndrome. These two conditions in addition to my POTS have drastically altered my life. I am disabled, I can’t work, I finished high school only after six years of struggling. These disorders come with hospital stays, specialists visits, central lines, feeding tubes, mountains of medications, and various forms of treatmnets. But they also come with community.
Zebras, as those with rare disorders are called, will always find one another. They’ll reach out and offer a hand to those newly diagnosed. They’ll put together physical and online meetups so we can discuss our symptoms, rant about ableism, and just talk about life. They’ll be there at 3 am when you’re in too much pain to sleep but need a friend to just be there with you. I am glad, in a way that I was diagnosed when I was. As a young adult whose life was kind of up in the air, finding my dazzle (thats what a group of zebras is called), helped me find my place in the world.
If you are interested about my life, conditions, my activism, or if my story rings a little too true for you, feel free to give me a shout. And if you find my ramblings interesting…like, subscribe, and share!