We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient advocate who describes herself as a “battle-clever dystonia damsel.”
My dance with dystonia, a rare neurological movement disorder, has been a mangled cha-cha-cha with a wayward partner. Seems I keep taking steps forward then back — ever shifting my center of gravity — while engaging in a never-ending battle over who assumes the lead. In terms of mechanics, think of dystonia as a travesty of muscular timing orchestrated by the brain and executed by body parts moving off tempo. Imagine trying to master a new dance routine and your feet fly over the dance floor in scattered disarray. That’s dystonia.
Life took its unexpected turn when I was 8 and various body parts began to assert minds of their own. First my right arm insisted on straying off course when I wrote. Then the chaos spread to my left leg. In a creeping progression that eventually stabilized, a degree of unrest extended to all my limbs. Articulatory challenges gradually manifested. While dystonia is a game changer, over the years it’s become my second skin. I find it hard to recall time before dystonia.
When I was diagnosed in the 1970s, patients and their families exhibited far greater reluctance to broadcast their health conditions, especially when a disorder struck early in life. Disability was all too absent from the landscape, especially living in a small suburban town. We’d yet to witness the proliferation of the Internet let alone a grid of online media breaking down barriers and opening up lines of communication.
I didn’t encounter a soul with dystonia until my mid 20s. Often, I felt apart and alone. It was a challenge viewing my condition with any kind of perspective. How I wished there was someone out there who understood.
How far we’ve progressed over 40+ years. Accessing health information is as easy as a trip to Google to enter a superhighway, rife with two-way traffic. Significantly, information flows from patients as well as to them. Abundant resources have ushered in an era of patient empowerment where the scientific community no longer holds a monopoly on medical explanation. In this era of cyber-connection, patients have stepped forward to educate themselves, chronicle their stories and support one another. Health activism burgeons across the Web. Online support networks abound, even for a rare condition like dystonia.
Launching my own dystonia blog (Chronicles of a Dystonia Muse) seemed a rash step until I found myself amid a veritable revolution of personal sites and health communities steering disability and chronic illness into the light.
As for me, it’s the same cha-cha-cha – stepping forward, then back. But in this age of openness, I’ve moved on to a better place deep inside myself, traveling untold miles along the road to self-acceptance. The fellow patients I encounter serve as an unending reminder that I’m not alone in my health struggles and lend me critical perspective. I may not move like everyone else but at my core I’m just like everyone else.
Pamela Sloate is a health activist who is involved in an array of awareness efforts. She moderates a patient support group, advocates for the dystonia community, and advances fundraising. She holds degrees from Brown University and NYU School of Law, and her career spans law, marketing and non-profit administration. Her blog is Chronicles Of A Dystonia Muse.
Photo by Dominic Alves