written by
lucinda koza

I’m Not There

Narrative 3 min read , September 25, 2021

by Lucinda Koza

credit goes to original artist. video created by lucinda koza using the 2 images.

I’ve been mumbling for months. I’m not sure exactly when it started but I know it intensified once my dad moved in with us.

It’s gotten to be so bad that even my dad, who has aphasia, has started to say “I can’t hear you” and “I don’t know what you’re saying” and the frustration of the two of us not being able to communicate at all has reduced me to daily piles of prolonged sobs to which my father reacts by walking away, returning to his room.

The loss of ability to speak/be understood felt like an extension of the brain fog, confusion and amnesia I also feel, and my father’s inhuman reactions to my displays of emotion made me feel somehow as if I was the one with dementia and Parkinson’s. I was the one losing my faculties, while also making people feel uncomfortable by my behavior. This had all been an episode of The Twilight Zone, and the body snatchers had almost claimed their second victim.

I’d also suddenly found myself desperately out of breath all of the time. Walking up the stairs, once I reached the top, I was gasping for air and felt as if I might faint. First, I thought, I have gotten outrageously out of shape while working from home and not going out during the COVID-19 Pandemic. It felt absolutely ridiculous, but at the same time, I thought I had greatly underestimated the whole thing. Then, I thought I HAD COVID-19. Trouble breathing is a major symptom. Well, I’d been vaccinated, and, no. Then I investigated medication. Allergies. Anxiety.

Then I found the answer. It went hand-in-hand with the mumbling...I was holding my breath. All of the time. So I was always out of breath. The mumbling? Well, I didn’t have enough breath to use my full voice. But the reason for all of it was, I didn’t want to take up space. I was trying to make myself small. I was trying to pretend that I wasn’t really there. I wasn’t allowing myself to really be there. Because once I did, the horror of it all became real, and I was really there. I had to speak with full voice. I also had to take responsibility for what happened when I did.

The first time I connected my breath with my full voice after I figured this out, it sounded like the vocal equivalent of an infant on rollerskates -- or someone just screaming weepily about how they were really sad. I felt so sad for myself. Once you’ve mistreated yourself, there’s a special kind of protective sadness you feel -- maybe it’s about the 12-year-old or 6-year-old version of yourself. Maybe it’s connecting with that visceral knowledge that you are your number one protector, and you would never in your life let someone else stop breathing because they are subconsciously trying to actually not exist. Knowing you let yourself do it is a rough, rough road to walk down.

To be honest, I’m not sure where it leaves me.

I do know that I let whatever cocktail of people and circumstances this is take from me my breath and without my breath I have NO strength I have NO body and I have NO voice and I have NO Lucinda.

There’s something, an action, a verb, a word -- there’s a plan, there’s a quickening, give me liberty or give me death, one thing I can tell you is you got to be free.

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