A Balancing Act: How Women with a Hidden Disability Perform Femininity — Page 3:
11 Now looking back on it, she felt thankful she hadn’t reacted in emotion sharing with this insensitive coworker such a private aspect of her life. After years of doctors in long white coats peering over spectacles with clipboards in hand, transition questions from physical to emotional, concluding with a possible diagnosis of Depression and Somatization of symptoms, she had nearly given in to believing that it must be all in her head. Mary had gone years without the security of a label, despite countless blood draws, strength tests, and muscle biopsies. When the diagnosis finally came, it was bittersweet. Mi-to-chon-dri-al My-o-path-y. The doctor sounded it out with a glint of pride as if coming up with a stickler for a spelling bee.
12 Mitochondrial Myopathy! A form of Muscular Dystrophy. These words on a piece of paper, in black and white, were proof that it was not all in her head. She felt like shouting from rooftops, “I have a name.” Her teachings in Judaism engrained in her the concept of Yahweh—if you can name it you own it. This is why the Jewish people tried to get God to give them His name. If they knew His name, they could control Him. And that’s why God responded, “No, my name is Yahweh, I am who I am.” Mary felt like because she could name her condition, she could own it and exert a little more control over it.
13 Gradually, however, control was slipping through her fingertips. Her move to the southwestern desert coincided with her body revealing her diagnosis more and more frequently without her permission. When it began affecting her work relationships, Mary sought out a new neurologist for answers. Armed with a thick file of paperwork, Mary explained, “It’s getting worse. I am slurring my speech, and I’ve never had such severe muscle cramping like I’ve had in the past year. My legs go numb all the way up to the thigh, every other day. I have to crawl around my apartment.”
14 Looking at her barely covered by a paper-thin cloth, the doctor said matter-of-factly, “Well,” looking down at the chart to find her name, “Mary. At least you’re not in a wheelchair.”
15 A breeze was picking up and Mary pulled her sweater closer, shuddering with exasperation at this memory. The chorus of howling coyotes rose with the darkness. But at least they had each other, Mary thought with jealousy. Last week, Mary had mustered up the courage to seek out the monthly support group run by the Muscular Dystrophy Association. She had felt excited, desperate even, for the possibility of meeting someone whom she can relate to, whom she can learn from, whom she can confide in and conspire with.