A few weeks ago I wrote a post that I titled Everything is Not Okay. I wrote about my deep fears and anxieties about what is happening to me, and about death. I wrote about my kids and how this affects them. I wrote about the day-to-day struggles. I wrote about choking and laryngospasm episodes where I feel like I’m suffocating to death. Those moments of thinking “I’m really going to die right here at the dinner table in front of my children,” and the trauma that leaves on my psyche afterward. I got a lot off my chest, which was good, but I couldn’t bring myself to publish the post. It sits in my draft pile and it will maybe get deleted, or maybe just sit there unpublished like a private diary entry.
So no, everything is not ok. Even though when asked I always say “we’re ok,” “we’re fine.” In general I’m objectively not okay. I have a degenerative terminal disease. So no, everything is not okay. BUT. But.. But in this moment, I am okay. Okay enough to be here writing to all of you. Okay enough to share some things, and keep others to myself. Okay enough to smile at the birds outside my window.
My experience with the unpublished post made me realize I need to share more. Not everything- I want to keep my darkest most vulnerable stuff to myself. But I think if I explained some of the things I experience on a regular basis it would both inform others and help me feel less isolated. So stay tuned. I’m going to dedicate the next several posts to these topics.