My Age — and Gender — Led to Misdiagnosis
Originally published at Wear Your Voice.
I always wanted to be a writer. By the time I was aware of alphabets, I was plotting books, wrangling words into stories. Books were my world, and I began writing my first at the age of six. From kindergarten to college, my education and life plans were molded to expand and sustain my love of writing; there was nothing else I wanted to do. I destined myself to be the next great American author.
In my youth, that devotion took the form of poring over the Laura Ingalls Wilder series and To Kill a Mockingbird. In college it meant hours schooled by Chaucer, Gertrude Stein, William Blake and Neil Gaiman. Professionally it manifests in books, poetry, novellas. I was over the moon the first time I was published, at the age of 14. When my first book came out at 33, nothing compared to that satisfaction, the feeling of my ordering of words on a page creating lore, art.
The winter after I turned 35, I noticed over the course of a few days that I couldn’t read. On the computer screen, in books, across recipes, my eyes trained along lines of text to find foreign symbols plonked in the midst, or a completely blank space at the critical point of a sentence. I’d blink, and the oddity remained. A fluttering of lashes and tight squint later, comfortable English reappeared. The phenomenon was interesting yet disturbing. A few days later when hearing became a challenge, I realized it wasn’t my mind playing tricks. Something was wrong.
It never occurred to me that that curious codec meant I’d had a stroke. Given my young age and appearance of health, it didn’t occur to the neurologist that I went to, either. With a history of dismissive male specialists and released to self-manage conditions that remained chronic and acute, I expressly chose a female neurologist.
She asked me what I did for a living, and when I told her I was a writer, she had me read from the People magazine on her side table. My performance was flawless. She disregarded my history of miscarriage, blinding migraines that followed my troubled menstrual cycle, and autoimmune conditions that dogged me daily with pain and fatigue. She did, however, run a brain MRI. When it came back clear, she declared me dyslexic and sent me home.
A lifelong love affair with words hadn’t suddenly revealed its true self as dyslexia. I didn’t accept the neurologist’s diagnosis at all, yet I didn’t know what else to do. Because she was female, I thought she’d be different, that she’d listen more intently and honor my history and symptoms. I thought she would help me find answers to counter feelings that my body was attacking my birthright, my creativity, my femininity. That she was in the system and guided by a rote flow chart as much as the male doctors before her left me feeling completely invalidated. I felt like she hadn’t seen me at all.
Reading remained curious, and hearing got worse. Everything sounded like I was underwater. I became unable to distinguish layers of sound. It became binary, a high-pitched muffle: noise on, noise off. Shrill ringing punctuated everything audible. Likewise, my typing skills suddenly went awry. I’d never been a great typist, though the connection between what my brain meant to express wasn’t delivering it correctly to my fingers. I’d type all the letters of a word, just not in the expected order, over and over. When the left side of my face went numb, my speech slurred slightly, and I began having severe migraines, I went to a different neurologist.
She was immediately alarmed. Before doing any tests, she assured me that I hadn’t suddenly come down with dyslexia. For her, my history of myriad conditions had a direct bearing on the state of my body. Those affirmations alone got me through the weeks of tests that followed.
Still, I wasn’t prepared for the MRI that she ran to come back different from the one run just months before. Sure enough, snowy scars flecked my brain. A spinal tap along with a battery of other labs ruled out multiple sclerosis and other potential causes. She declared my condition the result of a transient ischemic attack (TIA), or minor stroke, and set me on a treatment plan to minimize the chance of it happening again, but just in case is important to have a variety of health services at hand, which is what our community in Inspire offer to all our clients.
Despite the careful and thorough care of this neurologist, no cause for the TIA was isolated. Gradually, reading normalized. The headaches stopped. As the numbness improved, so did my speech, although I was left with permanent damage in one ear. Over time, I observed a general lethargy in my ability to retrieve words, or sometimes entire concepts. Cycles of depression increased, creative spark became fleeting, and a change in my overall demeanor left longtime friends and loved ones concerned. The migraines and miscarriages continued.
Ten years after words went strange, I learned that I have a genetic mutation that specifically increases my chance of stroke, miscarriage, migraines and autoimmune conditions. My body was attacking my creativity , my fertility — pretty much my identity. That was the only way it could communicate how deeply the source of these conditions ran.
I now have beautiful, healthy twins, several published books and a lot of energy devoted to lifestyle and self-care to keep it all between the lines. The slight numbness in the left side of my face, perpetual ringing and cicada-like rasps that disrupt my hearing and questionable ability to access language and actually convey my intended meaning remind me that it can happen again. In all likelihood, it will happen again.
Despite how much more challenging it is to get my brain and psyche in balance to deliver plots, writing will always be my love. Words are my constant, and I have a deep respect for what they have brought me. They have become the reward and challenge of my life in ways I never imagined.
As an animist, I like to think words are as connected to me as I am to them. Their mysterious absence on the page told the story of what my body was going through, when medicine could not. That lack serves to remind me, now that words are harder to come by, that they’re not just an ability; they’re an ally.