There’s a Clamp Around My Throat

Literally and figuratively

As I’ve referenced countless times in this sacred space, I have either an Essential Tremor or Dystonia. Regardless of the diagnosis (my neurologist floated the Dystonia label for the first time at my last visit), my voice doesn’t work. And, it seems to be getting worse.

We were in the Rocky Mountains last week and the altitude seemed to have an additional adverse effect which I’m hoping will abate. It was as if I were gasping for breath - storing up enough fuel to push out each thought that I had carefully constructed in advance, practically counting the number of syllables and always assessing whether I would be able to deliver the goods. Sometimes I deemed it just not worth the effort.

This whole internal assessment and negotiation has me really concerned. So many feelings circling. I am a social creature by nature and keeping quiet - because it’s physically too hard to speak, I don’t want to inconvenience the recipient, or hear ‘what?’ repeatedly - is increasing in frequency.

There is definitely embarrassment and shame around my disability which, I know, only makes it worse. When in the Centennial State, we had lunch with two of my favorite people in the world and I was super excited to see them. For the most part, I sat quietly. These two people know me really well. These two people have spent countless hours Zooming with me. These people lovingly accept me just as I am yet I found myself strategically posing short questions, silently encouraging the three others at the table to carry on the conversation.

Walking and talking at the same time do not work for me. The physical exertion and the fact that I am side by side vs. across from my walking partner makes it close to impossible to generate speech and be understood. Yesterday, one of my absolute besties and I met to walk a new section of the East River Esplanade that had recently opened. It was hot, I was overdressed, and I was so embarrassed (and yes frustrated) that I could not do such a simple thing - carry on a conversation.

We stopped at a new Instagram-worthy frozen Greek yogurt shop and I so hoped that the lack of movement and the cold substance would somehow loosen my throat, enabling me to get a few words out as we enjoyed our treats while sitting in a shaded playground. Not so much.

Many days after an exercise class at our gym, I take to the sauna with another wonderful friend. We perch ourselves side by side on the upper tier and chat (unless there are other women in the chamber with us in which case we respect their desire for quiet with a side of heat). Without it ever being discussed, we turn toward each other when I speak - easing the work for both of us.

Even fun activities like playing Mah Jongg (total beginner!) are stressful. I find myself apologizing almost every time I croak out a ‘three dot’, ‘four bam’, or ‘seven crak’. Happily, on the very few occasions where I am blessed with great tiles and a shit ton of great luck and can proclaim, ‘Mah Jongg’, my shame is momentarily displaced with unadulterated glee.

The telephone is my arch nemesis. I have to talk myself into calling a customer service rep and, for those that know me, this is a not infrequent occurrence. If I have the wherewithal, I will start by announcing that my voice does not work well and suggest that if they cannot understand me that they should ask me to repeat myself.

This pre boarding announcement uses up a lot of my oxygen and there’s no bag that’s going to magically drop down from above. Providing my email address is akin to climbing Mt. Kilimanjaro. It never goes smoothly and, with each request for me to repeat myself, my stress, anxiety and shame skyrocket. Getting that $4.99 refund becomes far less important.

Mind you to the best of my knowledge, to a person, not a single human being has ever rejected me or looked at me with disgust because of my voice. Intellectually I know that people are not my friends because they pity me. Yet part of me - a young part - is suspect. It gets even more interesting when I put this very visible flaw into the rubric of performative perfection. My early (til age 65 or so) belief system was that you had to be perfect to be seen, heard, loved - to be enough.

When I was working with an IFS practitioner, we explored the idea that my voice, or rather lack thereof, might in fact have a psychological component. The clamp cleverly prevented me from giving voice to my needs and expressing my truth; in essence, keeping me safe.

There is no question that there is a physiological misfire between my brain and vocal cords as evidenced by the imagery captured by the camera they shoved up my nose and down my throat. I am not a candidate for Deep Brain Stimulation surgery (relieved). My neurologist prescribed a Parkinson’s drug that has been used for decades in the hope that it might dampen some of the vocal tremor not to mention hand shakes. The pill bottle has been sitting in my nightstand drawer. Unopened.

I’m open to and secretly counting on the fact that the ‘clamp’ or ‘French Coffee Press’ as I not so lovingly called my affliction might in fact experience some relief if I were able to uncork some seemingly very stuck toxic energy. I’m doing my research and making plans via email.