I’m Disabled. My Life’s Complicated. That’s Okay.
Navigating my disabilities and the expectations of people who knew me before my diagnosis
I sat inside a sterile white hospital office and recounted my progress since my last doctor’s appointment. A woman whom I love more than anything sat across from me. We’ll call her Azucar. My curandera, Dr. Sam, a neurologist I’ve known for more than a decade now, sat quietly at her desk, her back slightly curved as she leaned forward. She’d only break her posture to scribble a few details, and then she’d return to her stance as her black hair brushed beside her shoulders. The same strands of graying hair sat unevenly spaced, with only a few newcomers to accompany them; they’d been that way for years.
Dr. Sam asked me about “that thing” I did with computers — I moderated Game Informer Online — and I told her it was going well. New tools since our transition to Disqus made the comments section a helluva lot easier to manage; trolls couldn’t game the system, like a particularly notorious one had for several years.
Physically, I still felt the pangs from failures before; progress I’d made with my physical therapist at UNC slowly became undone due to ableist assumptions about my experience. Well over a year after being discharged, I still felt angry about my healing being cut short.
Azucar’s voice interrupted my thoughts. “Maybe [the physical therapist] saw that you were ready now and didn’t need anything else,” she said. Her tone was empathetic but yet again a reminder of how little she understood the situation. The PT literally claimed that my disability was merely in my head, simply “anxiety-related.” Dismissal of a Meniere’s episode led to me cutting a tremendous gash into my foot when I lost balance while using my walker. Azucar tried to care for me and knew that I still experienced severe episodes.
“She was probably limited in what she was able to do and had done all she could,” Dr. Sam replied, and her answer was closer to the truth without having access to all of the information I’d shared with my primary care doctor. My curandera was one of the few docs I’d had in my life who never devalued my experience. Others I knew were not as fortunate. Besides, when it came to extended health…