If you have ever been even slightly strangled, the most gentle strangle, if you will, you will understand what I write about today. Its disorienting and steals your breathe and speech. Thinking is secondary. Apparently, unbeknownst to me until a few weeks ago, cervical dystonia is great at the strangle technique. It makes me want to rage for many reasons. First, none of my doctors have ever discussed breathing or speech issues with CD. Second, because its plain awful to experience. The irony, because rare diseases thrive in irony, is that it doesn’t happen when I exercise. Instead, it rears up when I speak. Being thwarted while expressing myself is maddening.
I had this realization when I landed in the ED for a pulmonary embolism check. I was breathless and had pain in my back. Thankfully no PE, but finding the culprit was CD trying to steal something else from me has brought a soul shaking NO from me.
I systematically began assessing where I was and wasn’t having deficiencies. It included singing loudly in the car (thank you Foo Fighters), talking on trail (uphill and down), HIIT, and various body positioning while speaking. My singing voice has changed and I lost pitch control. As I never had any future as a singer, this truth is only an annoyance. I have to think it’s more bothersome to those around me. The more my body is supported when I speak, the less the strangle. However, if I have ANY feelings (positive or negative) about the conversation, the strangle is more. Imagine being excited about catching up with someone you love and your body is just like, let me give you a wee strangle to celebrate. HIIT is just normal suffering. Same with running. But I cannot run and speak when going uphill due to the strangle, while downhill is fine. This will limit my trail gossiping with friends.
This is the hard part of living with a rare disease. So little is known about the natural history of it that as a patient, there is the underlying deep unease about what indignity will show up next. And when the surprise strangle appears, what evidence exists to fight back.
So far, my ideas are: more singing, voice training, speech pacing and going back to playing my high school saxophone. There is the option of Botox into the larynx muscles but that feels terrifying. If any of y’all have other ideas, please share. I’m open to crazy levels of creativity with this.
What I have learned living with CD, if I am systematic and focused with regaining function, I reach my goals. My body is capable of relearning how to move and building the necessary muscles are possible. I just need to pay in blood, sweat and tears. Bring. It. On.