The ebb and flow of living with a chronic illness feels more chaotic than a grocery store around the holidays. Every day I wake up not sure what by body (or to elaborate on this metaphor, the entire grocery store) will have in stock, what will be expired, what is discounted and what is on special.
As I meander over my body accessing the aisles of my limbs and insides, I take stock in what hurts and what doesn't. The last trip I make before getting of out bed is the checkout counter, more obviously, my brain. My brain takes all this information in, sorts and categorizes, and then it decides what I can afford to do, and what has to go back on the shelf for another day when I have more physical currency.
Lately, everything except a few small items have gone back on the shelf and I walk out being able to carry my own groceries, but knowing that they are limited and won’t last me very long.
Sidebar: having a disability sucks when you go grocery shopping because food products weigh a lot and carrying and lugging and unloading and loading all that crap take a lot out of me.
Case in point: When I first put up my website I wanted to write and post once a week, but my brain has not been capable of organizing my thoughts in a way that makes much sense to me. I didn’t want to give up thinking on all this and pondering my thoughts aloud, so I took a break from the blog and participated in an Instagram challenge instead. The #ChronicallyInspiringChallenge was a once a day photo challenge that required me to post a photo and respond to a prompt about what my life is like, some related to my disability some not. It allowed me to stay connected to my brain and my words without requiring the same kind of focus that this type of writing does. Luckily, I learned a lot but that didn't diminish the fact that I struggled daily with my promise to post once a week on this blog.
The challenge illuminated how difficult my life is right now. It taught me that I like to present a positive and optimistic attitude, even though I do not actually feel positive or optimistic at present. The challenge showed how phony I feel at time… It showed me how easily I can preach hope and self acceptance but when I am really in the muck of a pain episode, I go to dark, scary places. I think things that I don’t like, nor will I admit here. Even just typing that sentence right there has me wracked with insecurity in my vulnerability. The challenge taught me that I am a complex being, one who feels hope and despair in the same day, maybe even in the same moment. I learned I can speak to that, out loud, and it doesn’t make me weak or less of an inspiration, or a “bad disabled person” or “cliché.” It makes me, me.
I also learned that my art/creative pursuits/Improv are suffering because of my disability and that makes me want to give it all up and drift away on a piece of driftwood into the sea and never return. My passion suffering in addition to my body's suffering, broke me this month. Completely. But in brokenness, I have the chance to put the pieces back together in a new way.
I think we all know that I want to create comedy and improvised art pieces for the rest of my life. But, I want to do it with all my faculties and brain power. I don’t want to be in a scene and realize that my head hurts, that I have to puke, or that my knee is throbbing, and have my body fiercely snatch me out of the reality on stage. Improv moments are fleeting, and if you lose focus, you might have lost an extremely important piece of information or chance to connect and create a fun and inspiring scene.
So I am angry today.
Damn. That felt good to say.
I am angry, I am angry, I am angry, I am angry. I am angry that I cannot be the kind of artist I want to be right now. I am PISSED. It is not.... fair.
BUT THEN >>>> Just when I am enjoying my rage, my inner eternal optimist chimes in. They sit on my shoulder like a BOOMING announcement of a new sale on red wine socked parmesan cheese at the gourmet counter, and tell me that I am lucky my body is forcing me to grow ACTIVELY while I participate on stage.
This body gifted to me by the celestial universe is giving me the gift of flexibility. I GET to live in a constant state of metamorphosis as an actor and as an improviser… as a human. I GET to struggle so that I can create solution. I GET to struggle so that I can create appreciation. I GET to struggle so that I can GROW. I GET to struggle so that I can fully celebrate my wins. I GET to struggle so that I can be authentic. I GET IT.... (eye roll).
I hope that I can let go of this anger. I want to use this moment as a teachable moment to allow life to happen at its own pace, and to adjust to it rather than force my will upon it. Just like any good improv scene, or talented improviser would say, each day I will make small choices, one choice at a time, one breath at a time to create a life WITH those around me.
Today I choose to see my anger and let it be. It is my truth. If I can allow it to exist and react authentically, I might actually make a new and beautiful discovery and level up in my journey to understanding how to live, because one day my store will close and I will want people to know that I did my best to keep it full of honest products: laughter, joy, tears, pain, determination, fatigue, depression, anxiety, love, passion, lightness and darkness, and hopefully full of sparklers, chocolate, and LOTS AND LOTS coffee.
