Today I come to you with an important message to listen to yourself and your body and no one else because if there’s one thing in this world you are an expert on it’s your own body. I know that sounds trite, maybe even vaguely like the beginning of some sort of self-help manual, but for us spoonies (those with limited health and energy) we can be the most stubborn bunch out there to really internalize this. And it’s for good reason – most of us don’t look sick so we get constant messages from society that we shouldn’t act it either. You’re not really sick. As if we need to show up some day with a missing limb or some other proof. It’s to society’s benefit to do this. We make healthy and able individuals uncomfortable. They don’t want to ever be like us so they frequently deny our existence all together and it’s not just the society at large. My big ugly mental scars come from the medical establishment itself – because those of us who don’t have something wrong that can be easily diagnosed are often left in the surf. Instead of just saying, “Well, I don’t know what’s up but maybe someone else can figure you out” it seems like the knee-jerk reaction of most doctors is to insinuate that it’s in our head. This goes especially for women. Worse for teenage girls which is what I was when I first started having issues. Teenage girls after all are completely irrational creatures, 100% unpredictable. They’re swimming in hormones and feelings and ack! Who wants to deal with that? In the old days we were called hysterical. These days no one says that word because it’s sexist as shit. So instead they’re replaced it with something shiny and sciencey sounding. Psychosomatic. “She suffers from a psychosomatic disorder,” they say with one raised eyebrow.
And no matter how much I wanted to punch each and every one of them I instead winced and took it all onto myself. Maybe they were right. I mean how many people does it take to tell you something before you believe them? One? Two? Thirty? It becomes a slippery slope.
When I was doing well I told myself all was good and always will be and when I was doing poorly I repeatedly wondered if I didn’t previously feel like shit because I was depressed or mental. Maybe I like to be shacked up in a house I hate? Maybe there was some innate failure in me that prevented me from living a normal adult life? I mean that happens sometimes, doesn’t it? People just get stuck…
So let me tell you how my November went. I woke up at the beginning of it like I was waking from a year long torpor. It’d been a HARD year. Things had gotten wildly out of control. Little things like a pile of dirty dishes had become big things like “where are all these flies coming from?!” And everything was squalid. This was not how I wanted to be living and yet there it was that little voice in my head… well you do hate cleaning… Why yes, I do but not to that degree. Being irritated with clutter and not wanted to shuffle through this week’s mail is a lot different then letting your place get so disgusting that it becomes paralyzing just to look at it. But still. Maybe I am depressed and just let it go…
But for some reason a bit of the brain fog had lifted. I was able to sleep a little better. And somehow this kicked off a little burst of energy. So I got up. I refused to look at the big picture, instead I just gave myself little challenges. And I would get up for ten or twenty minutes and do one small task. Then I would take a break, sometimes a break that lasted for hours, and I would get up and do another small task. By the time I got into the routine of this I felt like I could accomplish anything and that I always could. I must have been choosing not to before. Right?
And so with Thanksgiving coming up I was in a final scurry to get everyone done. I was so filled with anxiety about it all I stopped sleeping. With four hours under my belt I got up on Thanksgiving day at 6AM and started cooking and one last push of cleaning. This place looked and smelled great! My floors were shiny! And I could see them! And the aroma from the oven was just gorgeous. I was proud of all I’d accomplished but I was so tired that I had to keep standing just to stay awake which in turn just left me more tired. By the time company came around I was unable to stand straight or keep my eyes open. I had a good time but my body had pretty much shut down. I was unable to eat anything I cooked. My stomach was on strike – which is not an unusual response to me not getting enough sleep.
When my company left I more or less blacked out – fell into a sleep so deep there were no dreams, no nothing, just pure unconsciousness. I woke two hours later with my bladder so full it was practically bursting and my body on fire. I could feel EVERY muscle and they were all screaming. I had JUST enough energy to get to the bathroom and flop back into bed where I couldn’t really move. Most people do not work themselves to the point of absolute exhaustion when your muscles go from normal, to weak, to absolutely refusing to function, so it’s hard to imagine. But there I was in a sorry state and you know the most fucked up part of it all? My overriding anxiety kept me awake for hours like this before I fell asleep again.
It’s been a wake-up call – this whole experience has shown me that no I am not living in a normal functional body and just being lazy, dysfunctional, or depressed. If I am depressed at all it’s because of my body not working in the first place! And so here I am with my mind more alert than it’s been in a long long time – I am racing to get everything I can done creatively. I’m writing, I’m drawing comics, I’m creating art – all because I don’t know how long it’s going to last this time. And I keep my eye on the future as I am hopeful. I am trying to use what little energy I have shedding the pounds I put on just sitting around for a year. I am hoping to work myself up to a point I can start leaving the house again for little excursions beyond just the grocery shopping and appointments I have been attending. I ache to travel again – to go see little glimpses of this beautiful world. I want to go to museums and galleries to surround myself with art, I want to continue learning weird little historical narratives, I want to pick up my photography again… and I still hope some of this, any of it, may someday open the door to a brighter and more secure future for me because part of this intense desire to experience everything is the profound fear of missing out – because I know in my life security is just an illusion. Whatever I have today could easily be gone tomorrow. And as life gets harder and not easier I want to grasp at the straws of happiness while I still can. Still includes accepting myself for who I am – a bright mind in a shattered body.
**All photos in this post have been taken by myself Theophanes Avery of various scenes in my life.