Girl, You Missing Out
Dinners after 7PM. Dinner Parties. Dinner in general.
Weekend trips for friends’ birthdays. Celebrations. Party nights.
Readings. Shows. Concerts
Classes. Meet ups. Projects. Workshops.
Beach trips. Park picnics. Gatherings.
Bars. Dancing. camping.
No. No. No. No. NO.
Missing out and chronic illness, for me, go hand in hand. Part of this is energy, not having it. But a larger slice of the missing out pie is my aversion to humiliation and germs and my fondness of cleanliness. Do you know what a bathroom in a bar or at a concert looks like? Do you want to get all intimate and cozy with that toilet and do anything other than hover over it to pee? Me neither. Ever seen the line for the bathroom at a house party? Want to be the one that everyone is whispering about taking so long and annoyedly wondering if they are ok? Me neither. Have you even seen a remotely sanitary bathroom in a park? Me neither.
I don’t have to continue right, you get the point. Ok, I’ll spell it out anyhow. I love you. I want to hang out with you and be free and dance my ass off and laugh and have any kind of bathroom be just dandy because I can pee almost anywhere. But this isn’t my life right now. Will it ever be? I don’t know. I’m tremendously lucky to have a nice home, because I spend a lot of time in it. I watch a lot of television and sometimes that’s fine and other times its sad. Sometimes I feel forgotten and strange and sometimes I am grateful for the quiet and hibernation.
Sometimes I push myself. Especially when it comes to work. For example…A few years ago I decided to be part of a short film challenge. Whenever I do any acting work, I always feel like I am holding my breath until I see what the bathroom situation is on set. For this day of shooting, it was not good. Tiny apartment, bathroom in the middle of all the action. 20 or so people. ANXIETY. Luckily, my bathroom PI skills are on point. We had previously had a meeting downstairs in the gym/rec room area of the building and I knew there was a bathroom down there. So I spent the entire 12 hour day jetting off when I wasn’t needed to go downstairs and use the bathroom. I didn’t tell anyone this. Who knows what they thought of my escape artist disappearing act, or if they thought anything at all. Unfortunately, this has been the case on more than one occasion. I’ve found many a secret bathroom on jobs, its a well honed skill and sometimes there isn’t a secret one, just the one in the middle of everything at which point I usually decide not to eat. I tend to leave jobs starving.
Living in and with and through chronic illness is so much more than the obtuse physical challenges. Yes, those are hard. But it is not the broad strokes of physical pain that fester. Its the side dishes. The loneliness. The weighing whether it is worth the anxiety and possible embarrassment to risk it and not miss out. The missing out. It’s the emotional dis-ease. The spiritual dis-ease. The yearning to laugh more, be more, do more and the pinch on your soul that barks at the invisible fences keeping you safe at home where you wont be zapped by the sometimes cruel, uneducated world and the humans that roam free in it. Those are the fissures that become abscesses. Those are the joy stealers.
If you are reading this and live in a healthy body, next time you just pee in a public bathroom, have a little dance party. If you have a chronic illness, I am with you. I see you. You may be isolated by illness but you are not alone.