They Can’t Run to the ER

I am trying to build up the courage slowly

Thank you for your patience, and here is a little update from late last week about ‘dat.

If you have a prompt or a question or a truth you’d like me to tackle to add some texture here, pretty please drop below?

I read EVERY comment or word anyone is ever kind enough to share (both at @catchingbreaths, and DM, and email, etc)- but know that I am terrible at replying to Sub-friends a lot of the time and for that I’ll genuinely always be sorry.. Always guilty.

I never miss a word you drop and swear I don’t take them for granted- but sometimes I use them to fuel the Writing [almost) Everyday Promise here as best I can, despite the pain- even whilst failing at having the ‘pain tromp ability’ to write as often as I’d like to those I love.

But… a reply in a piece here is like a very long text response, perhaps?

Thank you for staying here… for catching your breath for a moment through the somewhat-dying-art of writing (and reading anything longer than a 2 sentence caption)… And for caring about the freelance weirdos of the world who sometimes need to survive, but who’s bodies sadly can’t yet fit into the 9 to 5.

xo

Hard truths:

Some people see blood every single time they go to the bathroom… and it becomes normal.

They can’t run to the ER. They can’t tell anyone about it or allow themselves to worry. They just lose blood… every single day… and that’s normal.

(Yes, if I finally got an ostomy this would stop. I am trying to build up the courage slowly. Right now, another surgery just seems too overwhelming and intrusive; The lowest on my totem pole. “Can’t be bothered”. If my spine wasn’t my spine, I’d probably have ability to care more.)

Some people have Cystic Fibrosis and cough all the time, and some (like me) find life altering improvement from experimental treatments like stem cell transplants. Others, from phage therapy or gene modulators.

But…

(There’s always a but)

We still are one cold away from a fresh infection.

We still know exactly what it feels like to not be able to take a full breath or to worry about laughing too much because then you’ll start coughing. (Soft flex but: I could basically write a 30-step guide on different ways to position finite muscles to avoid a coughing fit for a short period of time.)

We still watch our friends with same illness go down faster, or sooner, or suffer, or feel survivor’s guilt… and aren’t even sure if our quality of life deserves the title “surviving”.

Some people have sickness but don’t want you to know.

Some people have sickness but compartmentalize by mostly writing about it. (Hey. Sup?)

Some people have sickness but they aren’t the poster child for that illness - they have a variant of, or their symptoms are atypical, or they aren’t like the movie you saw that one time about that illness that made you an expert.

Some people aren’t like some of the people you think define all sickness.

They just have to survive in a mutant body that doesn’t fully fit with the other mutant bodies, but it doesn’t make their pain or symptoms or abnormal-normals any less real.

PS: Kindly consider booming a supportive Word Nerd if you’re able (every little bit counts and helps keep this ongoing memoir going, or… Share with you someone you like?