(cw: discussion of suicide)
I’ve been thinking lately about chronic illnesses and the “Spoon Theory”. Basically, the idea is that activities that healthy people factor into their days automatically - getting dressed, showering, going about their normal daily routines - can be costly enough to people with chronic illnesses that they may not have enough energy to do them all, or have very little left over - they have a much tighter “energy-budget” to work within. People with chronic illnesses have to be carefully aware of where they spend their energy, because they don’t have as much to spend.
This theory has always resonated with me, particularly when I’m in the midst of a particularly anxious and stressful period, or when depression rears its ugly head, like it’s been doing to me lately. A friend of mine recently wrote some thoughts down about healthy folks borrowing the “spoons as units of energy” terminology to discuss their busy personal lives, as if being tired after a really active day was the same thing as struggling with Fibromyalgia or Chronic Fatigue Syndrome or Multiple Sclerosis. She saw it as missing the point of the story, which is that it’s NOT like a normal person’s experience, since they always have a surfeit of energy above and beyond their regular routine, without an illness and/or chronic pain constantly syphoning energy off.
This perspective is one I hadn’t really thought of before, and I was pretty immediately worried that maybe my chronic issues “didn’t count,” since they’re mostly not physical. I was quickly reassured that this wasn’t the case when I asked her - I know some good and amazing people! The thing that struck me after I asked, though was this. This is my life, from here until the end. I can learn how to manage it, I can medicate it to take the tops of the peaks off of it, but this will always be normal, for me.
I’ll never get invited to a social thing and not have to pause and take stock of whether being in public will help or hinder my anxiety and mood levels. I’ll never be able to hear “you’re cured!” Waking up will always be a bit of a game of Russian roulette - do I feel like I deserve to breathe the air, today? Am I inundated in a malaise of dread, because something is about to go catastrophically wrong? Or do I get to be a “real girl” and have a normal day?
It’s funny, because the platitudes are full of phrases like “permanent solution to a temporary problem”, and “it won’t always feel this bad,” but that’s just it. It’s temporary this time, but it ALWAYS comes back. There’ll be good times, but there’ll be bad times, too. There’s no escape from the black hole that hides itself in the center of my rib-cage and sucks everything it can into a tiny pressure point of pain, leaving nothing outside it but a seeping vacancy. No way to avoid the looming specter of unspecified doom that lives in my heart and my hands, causing them all to run rampant without any particular reason. No matter how fast or far I run, there I am.
Chris Cornell died this week - he was a fixture in Seattle music history, and one thing I’ve learned about Seattle is they are serious about their local musicians. It seemed like everyone had something to say about Chris, about the grunge scene in the 90’s, about depression, anxiety, and suicide. All the usual lines came out. “If you’re feeling down, talk to me”, “It gets better”, “call <insert hotline here>”. It was SO hard not to just yell at everyone about how they only seemed to care when someone famous died. They mean well, and when I’m in a good place I can see that they’re trying to show that they care. Reminders of that are good. But times like right now, all I can hear is “we’re sad someone died, and we want you ALL to be inundated in the fact that suicide was the cause of death and we lost someone so very important to us so you’ll be sad with us.”
Also, the fact that Chris couldn’t do it is scary as fuck, honestly. He obviously had been dealing with some of the same issues I do, for a long time. He had money, he had resources, he had meds, he had a family that loved him. He was doing something that I truly hope he loved, into his 50s. He still didn’t make it. If someone with all the advantages can have things eat him from the inside out, what hope for us mere mortals? I can imagine EXACTLY how it feels to do something that is supposed to be energizing, finishing up, and thinking “Why does this feel so bad, if its something I’m supposed to love? What’s the point?” I’m sure there’s a lot of projecting there, but, well.
I’ve been dealing with new and exciting symptoms, lately, too. I’ve found that the tiny pains of yanking hair out is… I don’t even know how to describe it. Hurts-so-good, but not really. More like “here’s a tiny bit of destruction I can control, and maybe if I can do so, all the giant pieces of destruction outside myself will feel more controllable, too”. Any way you look at it, I’m missing large swathes of my eyebrows, which is challenging for all sorts of reasons. Ever had to deal with eyebrow stubble? Life is fucking weird. I kind of hate knowing that people can look at me and SEE how upset I’ve been, though. A friend suggested an eyebrow pencil to help fill in gaps, and I am not sure how to admit I’ve never bought a piece of makeup and don’t know what I would do with one, let alone how to pick one out.
The other thing that’s gotten worse and worse recently is that my ability to process and express language reliably and coherently seems to be falling more and more apart. The more important the thing I’m trying to express is, the harder it seems to be to put all my verbal ducks in a row. Arguing for a side on an important decision with my project-manager and the company CEO? Hope no one minds it takes three tries to get that initial sentence out! Even little things get mixed up, though. I about died with how difficult it was to order an Arnold Palmer and a cone of roasted nuts at the soccer game last weekend. I don’t even know what I was so twisted up about, either, I just was.
Today I called Red Dead Redemption 2 “Rockstar Cowboys”. A buddy looked at me and said “I think I understand more about how you think, now!” with a grin, and I couldn’t really disagree, but it’s gotten a lot more frustrating to be reaching for a word, or a phrase, and have nothing come out. My spelling has gone down the tubes, I’ve been making a lot of dyslexic mistakes that I mostly had been trained out of a long long time ago. At it’s heart my job is a three-way of logic, problem solving, and communication. When I can’t get my vocabulary to cooperate enough to ask questions, or critique someone’s approach to a problem, or explain something I wrote, it feels like I’m a failure.
So, you know, here’s a big 2-finger salute to my life for right now. I know it’ll get better soon, for awhile anyway. I know that sometimes you just gotta roll in the mud for awhile and curse the fact you fell into the metaphorical puddle right outside your front door… again.
🖕🏼 🖕🏼 ⛈🕳🐷