Patient support groups helped me find care.

Posted July 14, 2021

1st image is a hybrid contemporary and Renaissance-style portrait, a woman with a calm dignified expression regarding the viewer, wearing a crisp white neoprene dress and a cervical collar evoking a European ruff. The background, clouds and blue sky. In her hands, a little toy brain in an astronaut helmet.

I was diagnosed with hypermobile EDS (hEDS) in January 2018. In October 2019, I started experiencing debilitating fatigue and neurological symptoms. Over the course of the next year, parallel to the pandemic, I went from being able to walk ten miles, to five miles, to one mile, to a quarter of a mile before I had to stop and lie down to relieve the pressure in my neck and head.

At the end of every day and after moderate activity, my neck muscles would get tired, and then I could feel gravity pressing something into my brainstem. My eyesight dimmed, my thoughts got sluggish, moving my legs felt like operating a marionette. I misjudged distances and bumped into doorframes. Liquids swallowed often went down the wrong pipe and had to be coughed up. Sometimes I lost my voice without warning and got it back minutes later, like a radio signal.

I learned the hard way to concentrate fully on holding things in my hands-on account of how frequently I dropped and spilled things. I got motion sickness from any movement, including rolling over in bed. Bending forward brought on instant headaches. Scary migraines landed me in the E.R. twice, feeling like part of my brain was swelling. I carried ID, health insurance, and medical alert cards with me at all times, worried that I might keel over away from home. My decline was erratic; good days made me question reality and hesitate to tell my friends how I was doing.

I can’t imagine a better torture method for a choreographer, rock climber, and former distance runner than getting punished for movement, even slow-walking or gently swaying to music or bending to tie my shoes. The life I wanted was dying in front of me. I gave away a bunch of sports and dance books, clothes, and equipment because it was painful to see them in the house.

In spite of all this, I was never totally lost. I had guidance from The Ehlers Danlos Society website, Jennifer Brea’s CCI + tethered cord series, and the EDS management manual Disjointed. I stand on the shoulders of everyone who shares advice in Facebook patient groups. This wealth of resources helped me seek the best care. It took one year and seven months to go from suspicion to diagnosis to surgery, and I know I’m lucky. Others have to struggle a lot longer.

In May I flew from Oregon to Maryland to have neurosurgery to treat craniocervical instability (CCI) and atlantoaxial instability (AAI). Now I’m eight weeks post-op from decompression and 0-C2 cervical fusion. My body is beginning to adjust to the titanium implant as part of my spine instead of a foreign object. Negative symptoms are fading. I’m getting stronger and stronger. At week six, I walked a mile. At week eight, I walked three miles. My muscles are sore all over, but my energy hasn’t crashed. Movement hasn’t brought on a brainstem-squeezing brown-out. I must be out of danger because I feel safe to cry about it.

Pride is beginning to edge out the hate I feel for what I’ve been through. My artist friend opened up their photo studio right when I felt recovered enough to sit for portraits. It was the perfect moment to try to frame my experience as visible, beautiful, and dignified, after feeling the opposite for so long.

Photo by Hannah Concannon (Instagram @dressupbox).

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