A Space for Poetry, Chronic Illness & Pain, and All Things 'Musible'——-"A word is dead when it is said, some say. I say it just begins to live that day."- Emily Dickinson
It’s another one of those solitude soaked nights again; where my pillow becomes heavy with pain like pollen, floating from space to space and joint to joint–aimlessly the night buzzes in the stillness.
Softly, I remove the Summer-light lavender comforter from my burdened body, thinking (but really praying) that the two pounds will loosen the weight of the day, the days I’ve spent carrying around such a burden of illness in my gypsy bones.
They are always stunned, confused. I have always been a fairy with clipped wings. Hour-by-hour tracing steps to see how I could’ve done something better, leaving trails of pixie dust in my wake, across the eyes of my believers, but for some reason never enough for me.
I should’ve married Peter Pan, sewn my glitter into the threads of his shadow while we forever traveled to and from our Neverland, never landing on times past or reverie. But, I spent too much time on Captain Hook with his clock–my inner child–counting down the wasted away years he planned to steal.
He played the parts of savior and captor together all too well, the Captain. Smiling his crocodile smile through waters deep, and had jaws of death and jagged life just the same.
But around here, there is no luxury of retrospection, only present tense or future flux. It seems as though space remains incomprehensible to many, but when all you have is ‘the state between’, you tend to notice the nuisance of change.
I wish five years ago before my RA diagnosis, I would have been more aware of my ‘state between’–would have recognized the flutter of my fairy wings and the pulsing of my gypsy heart. In previous years I would spend too much time pondering the could have beens, would haves, should haves if I only might haves!
These days, even during nights like these while I’m stuck in the ‘state between’ and hot tempestuous pain, I sit in the present, stay thankful for tomorrow, and allow my gypsy heart to perambulate without concern.
As pixie dust slowly begins to soften my steps, my journey–I remember the song of my heart– my purpose of channeling pain into purpose into passion. Then, sharing my passion with you đ
Today has been a pretty very difficult today. One of those days where you’d like to never move from the couch, or bed, or chair, but you have absolutely no choice because you have doctors appointments and life. Yep–that day.
One of the most uncomfortable symptoms of my RA is pleurisy which is basically when the pleura–membrane with a layer of tissue that lines the inner chest cavity and a layer of tissue that surrounds the lungs gets inflamed–and has severe sharp/shooting pains. I know, really basic, right? All that is important to know is BREATHING=PAIN! I was given one of those Peak Flow Meters a few months ago when I had my first severe case of pleurisy that sent me to the ER.
It is supposed to help keep my lungs open, make deep breathing easier, and allow me too track my progress with breathing when I am having long flare ups. Ugh! When I have to take this thing out, I almost immediately break down and crack open my little steroid tic tacs every time! But, I attempt to take my steroids as little as possible since it has so many longterm side effects.
My pleurisy has been so bad though, that I couldn’t even do my nails today! That’s right: I have Memorial Day toes and tips on! It is so terrible. For those of you who follow me on Instagram and Snapchat, you know that I am constantly changing my nail designs and nail shapes. I absolutely love doing my nails, it’s very relaxing to me. I think I enjoy doing most creative activities because they allow me to utilize my brain in different nonrestrictive ways.
My first attempt at doing a French Fade/Baby Boomer!
This is precisely why working in a corporate setting has never uhh been my ‘thing’. I feel like I am suffocating and that my time should and could be better spent doing a million other things than literally anything else going on on my desk, let alone in the office. The only thing that I found remotely exciting was the office gossip, and even that got too much too fast. I had my own stuff going on, I didn’t have time for all of those people coming to my desk stressing me out because her baby’s father wanted to have their baby around his new girlfriend, or because Jose caught his boyfriend cheating with Jose’s Uber driver that he thought he was going on a date with after he met him on Tinder…or the 45 year-old alcoholic coming into work cussing out the entire management staff, throwing papers in his face and telling him he needs to do the work himself if he can’t keep his mouth out of her business…and then she gets suspended for two weeks, but comes into work the next day, stands by my desk where I give her the eye and she sits down leaving a whiff of alcohol that I don’t know is Listerine or 80 proof. I do not have the time. Besides, I now have dedicated time and teaspoons of energy to give to my writing and music.I do miss working outside of the home though; just being able to see different faces, absorb fresh air and sun. Yet, for such a long time, being unwell has made me unable to work, both physically and mentally. It has just been in the last month or so that I’ve felt like, ‘Hey! I may be able to start doing this again!’ Most people don’t know that I have been working since the age of 13 (actually prior to that because my family has a business and you better believe I was contributing my share of help! But now, I want to focus on my writing and music–funny, how life works out that way I think.Â
So, my post is shorter and later today because I spent most of my afternoon getting yet another chest X-ray to check the condition of my lungs and heart (pleurisy and pericarditis–which I have had a couple of times before as well). Last night I was awake and in terrible pain (PAINSOMNIA!) until about 3:00AM, and in those moments, I spend time writing, editing, and submitting poetry. I want to share this piece with you which I have submitted for publication in various journals. It was under revision and I wrote this while awake at 4:00AM during a PAINSOMNIA! event, too. Please, I am open to your comments, to your questions.
If you also have a piece of writing that you’ve writing during a time of ‘PAINSOMNIA!’ do feel free to post it in comments below, or send mean e-mail so that I may post it here at a later time! Here is my poem again below!
CosmopolitanMuse 