One aspect of having Friedreich’s ataxia (FA) that I don’t hear many people speak about is the profound effect emotions have on the body’s capabilities, specifically the body’s ability to speak well because of neurological changes due to FA. For people with FA, emotions seem to amplify everything, turning subtle shifts in mood into chaotic spurts of sound.
I wonder if my teenage years were an early indicator of my speech problems to come. My classmates often commented on my constant smile, my easy laughter. Thirty-four years later, I suspect my cheerful demeanor wasn’t just my way of masking my sorrow; it might have been the manifestation of neurological changes due to FA.
As I aged, the vocal challenges grew. Controlling the volume of my voice became an unpredictable game, (like Austin Powers in the first movie). I’d suddenly find myself shouting or making strange, involuntary facial expressions, responses that completely undermined my intended message.
I’ve had countless conversations with fellow people with FA who’ve said they’ve had to explain, “No, I’m not drunk, or unintelligent, I deeply relate”.
It’s Not Just Emotions, But A Highjacking of My Voice
Despite all this, it’s the way feelings hijack my speech that truly stands out. In moments of laughter, words become fragmented, lost in sharp gasps of air and awkward pauses. Trying to convey a funny story turns into a frustrating exercise of calming my body and mind. And arguments? They’re a minefield. Clarity evaporates, leaving me sounding like a neurotic, overly emotional woman, a stereotype I desperately want to avoid.
Years ago, I began to think that FA was contributing to the difficulty I experienced when trying to express myself. More and more, I noticed a correlation between my escalating emotions and my progression of neurological changes due to FA.
Once, after a discussion with my mother that ended with me sobbing and my mother saying, “You need to go talk to somebody”—as if I were too sensitive or even suicidal.
I was frustrated with myself for not sounding clearer and calmer, and wanted to explain everything to her again, with poise. But I found myself getting angry. I knew my response to her would come off much more frenzied than I wanted it to.
Finding Out Neurological Issues Due to FA Do Make Emotional Regulation Difficult
During my next visit, I asked my neurologist if FA made this regulation of my emotions more difficult. She agreed that it did because emotions have a lot to do with the nervous system. I felt relieved for not having imagined my inability to control my speech and tamper my reactions.
Feeling justified, and in hopes that explaining this would help my parents understand me better, I told them what the neurologist said and how I struggled with emotional regulation because of the neurological issues due to FA. They didn’t seem to take it seriously—which frustrated me more.
Later, my father called to tell me he was paying for a ceiling lift to be installed in my home.
Overwhelmed with gratitude, I cried “happy tears,” which quickly turned into a monsoon. He did not respond well to my expression of appreciation. Instead, he angrily scolded me for “overreacting.”
The Struggle of Coping with This
These experiences leave me feeling profoundly misunderstood. It’s as if my body is betraying me, reinforcing the very stereotypes I fight against, including the belief that women, and especially women with disabilities, are fragile and overly emotional. I am not that. I am a person whose emotions, like everyone else’s, are valid, but whose body expresses those emotions in ways that are often beyond control.
Living with FA means navigating a world where emotions are not only felt but also amplified, distorted, and sometimes completely hijacked. It’s a constant battle to maintain control, to communicate effectively, and to be seen as more than just a collection of symptoms.
Living with FA is a constant reminder that disability is more than what one can see; it’s a complex web, where physical, emotional, and neurological threads intertwine.
I hope this glimpse into my experience fosters greater understanding and compassion for those navigating similar challenges with neurological issues due to FA.
If you have a disability that affects your speech, what are your coping strategies?
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