Model: Sarah Kirwan
Multiple sclerosis & superior semicircular canal dehiscence
Eye Level Communications, LLC, founder & CEO
In June 2010, I stepped off a plane in Los Angeles with a painfully full left ear, muffled hearing, throbbing eyes, vertigo, and a migraine. I also got off that plane with no idea I would straddle the line between a nondisabled and disabled identity for the rest of my life.
It took eight months for my multiple sclerosis (MS) diagnosis and almost 10 years for my superior semicircular canal dehiscence (SSCD) diagnosis, which was misdiagnosed as bipolar disorder and schizophrenia.
MS and SSCD share symptoms, but only one could be definitively connected to SSCD: autophony or hearing my internal organs moving and functioning more loudly than the sounds of the external world. This, combined with every other symptom I was experiencing, reduced my life to one of survival and scarcity. It almost sent me over the side of a bridge as I wrestled with suicidal thoughts and ideations I’d never experienced.
In the past 13 years, I’ve had 42 MRIs, given myself more than 3,409 injections of an MS disease-modifying therapy, and undergone multiple surgeries, including life-altering ear and brain surgery to alleviate 70% of my autophony symptoms.
My mind has been pillaged. My body has been ravaged. And yet, I am here as a testament to my journey – peaceful and strong, with a sense of gratitude one can only understand by living through it.
Photographer: Mackensie Rana