Disorders, Depression, Silence, and Renewal
--
A personal essay on overcoming disability and returning to purpose.
My cane’s rubber tip made a dull thud as it made contact with the cold, white floor, catching my weight as I walked down the hospital corridor. The bright red skull-shaped cane topper that I carved myself felt smooth in my hand as it swung back and forth.
This memory from January 2022 filled my mind as my 2023 started out much the same. The circumstances were much different, though. Last January, I walked slowly with a cane into a testing lab to get an echocardiogram to see if the genetic disorder I had been diagnosed with in 2021 had damaged my heart. This year, I’m feeling healthy and productive, at least so far, even as I visited a sleep lab to determine if I have sleep apnea.
2022 was rough for me health-wise. My genetic disorder, hypermobile Ehlers-Danlos Syndrome (hEDS), started snowballing in 2011. Snowballing is a euphemism for new issues caused by hEDS making themselves known while old problems worsen at an ever-increasing rate. I say “issues” instead of “symptoms” because the effects of hEDS often present as discrete diagnoses. It’s hard to say if any one problem is caused by a connective tissue disorder like hEDS.
Before 2011, the issues were disparate in both time and body systems. Every few years, I would have to have an organ removed (gall bladder, appendix, tonsils) or suffer a weird injury like having the lunate bone in my wrist come loose after a bicycle accident.
I mark 2011 as the year the snowball started rolling downhill because that is the year I dislocated my sacrum . . . again. The sacrum is the triangular part of the pelvis that sits between the illia and attaches to the spine. My sacrum tends to twist out of place, causing great pain and making walking hard. After 2011, I would dislocate my sacrum again and again for more and more benign reasons. Once, the acceleration of an elevator caused those bones to slip out of place.
Since 2011, I have been diagnosed with 37 different issues. Doctors have told me that I have everything from simple symptoms of hEDS, like thin skin and atrophic scarring, to full-blown disorders caused by connective tissue problems like Cervicocranial Syndrome (where the cervical vertebrae slide around pinching…
