It’s crazy how paralyzing a depressed mood can be, isn’t it? Technically it’s just a crappy
state of mind—and here it is pinning you to the bed, with a few cement blocks thrown on top just for fun. You have to get mechanical. Some practical robotic part of you has to step in start calling shots and you have to let it, or you’ll spoil like a banana in your bed. Nobody likes a spoiled banana. I’m going to get out of bed and let out the dog. I’m going to make a cup of coffee and watch the cream creep around the cup. I’m going to feed the dog and give him water and when I pet him at the door I’ll say something possibly sarcastic out loud like “Monty, your owner might be insane.” Then he’ll wag his tail as though I just told him we’re going to Disney World and it’s made purely of tennis balls that throw themselves automatically. Or maybe he’ll think ‘Jesus, my owner really is insane.’ But already, it’s dissipating. Just seeing his tale wag, it stirs something happy in me and moving becomes a little easier. Get back in bed, put the heat pack on your feet, take the morning dose of those 25 pills and let the blood and serotonin pump and swirl and bring you back to life.
And now here you are. I don’t know why I’m writing about rotting human fruit, there are so many other worthwhile things I could be writing about or I could be doing despite feeling like a bucket of a-holes. But I guess I can’t handle being on hold with Walgreens anymore, and I also find it interesting that physical movement actually does help fade those thoughts on repeat: the ones that usually aren’t very positive in nature. Movement or change of scene seems to change the channel in your brain somehow, and now the sun is coming in through the windows and you’re sipping coffee and your sentient self starts thinking You know, it’s probably all going to be fine and you’re kind of freaking out over nothing. Duh. Of course it will be OK. I mean, it’s going to hurt, but hurting never killed you before. Let yourself cry, feel the pain—you’re well aware now that it’s all part of the deal. But remember too the ammo you carry; the knowledge of painful times you’ve survived before, where everything was crashing down, things were in pieces, but life went on somehow. It reassembled. It kept going, just like you will today, and tomorrow, and the day after that. None of this is permanent. Just do what’s in front of you. Do the dishes while you have energy. Save the little frogs who can’t get out of the pool. Draw or play guitar or write a letter. Done and done. It’s going to be OK. Don’t listen to Taylor Swift right now. Or maybe ever. Just kidding Tay Tay. But for real what’s with that new song?
Days like these, where just moving is hard, and it’s not (completely) because I’m sick but because I’m just sad, it makes me think of all the people who have this disease and literally can’t move. They are bedridden, and every morning is waking up to the reality that they can’t just walk it off or change the channel in their brain by changing up their environment or going for a hike. They can’t listen to music they find therapeutic because this disease lives in the brain too—It cuts off sensory pleasure. I have sound sensitivity, I have some days where I don’t get out of bed because I’m heavy and weak and dizzy yada yada, days where the light from the windows is painful and all I want to do is sleep, praying that the next day will be better. Sometimes it is and sometimes it isn’t. But having met the people I have, and learning about those who suffer with severe MECFS, literally living in dark bedrooms—meanwhile people, actual doctors, are still under the impression that gentle exercise will fix this, that cognitive behavioral therapy will most likely help it…It’s discouraging. It makes me mad for them, and I’m not even dealing with a fraction of the suffering that they are. I know that getting mad won’t do anything, except make me physically worse actually, so I just have to do what I can to help fix this thing. It can feel overwhelming when I try to gauge the whole deal and all of the things we have to correct and change, meanwhile I can hardly do my stupid dishes. But I remember: one thing at a time, one project, one idea, one moment. Don’t get ahead of yourself—you don’t even have the energy to do that. I can thank for the disease for that!
I never wrote about it, probably because I didn’t want to jinx it, and also because it’s an extremely vulnerable thing to me, but I fell in love this summer. Like every time I’ve fallen in love, it’s been out of nowhere, fast, consuming, and… a gift. Things are kind of up in the air right now, which is never, you know, the most fun place to be. But I guess if it’s over, there’s really nothing to lose in writing about it now. It’s just hard, either way. Even loving someone like hell, this disease makes every part of it harder. Every breakup I’ve had since getting sick has had a whole hell of a lot to do with the fact that I am often a human wasteland and it’s probably not very fun watching someone be sick all the time. Especially when there’s nothing you can do. You can’t fix it. I don’t know how to be sick and date someone. I don’t really know how to do any of this.
The thing is, I think people assume we’re expecting more than we are. There is something you can do. I think this is where so much of our approach and ideas around being sick go wrong. It’s true you can’t fix the disease. It’s true there will be some very tough days. I don’t expect a dude to swoop in and save me. I don’t think it’s supposed to work that way anyway. The thing to do is just to be there. To make your concern and encouragement known when things are crashing like an airplane. It’s just like people’s awkward reaction to the bereaved who nervously admit “Oh I wouldn’t even know what to say,” when in comes to being around someone after they’ve suffered a loss. I’ve written it here before but I”ll write it over and over, There is nothing to say. You can’t fix many problems in the world, and it’s such a human flaw to think that if we can’t fix it we have no role to play.
I get it, it’s really uncomfortable when somebody dies. Trust me, I would know. Nobody likes a crying woman or knows what to say to a crying man, but crying is just what you do, man. It’s the natural way to deal with things. But we get all fidgety about it, we want it to stop. Let the people cry! There, that’s my protest of the day.
Sometimes being sick, on really bad days, I cry. It’s not helpful in the least, and it probably doesn’t make a lot of sense. I don’t even know what I’m saying at times. But when I’m crashing, my mind just feels like it’s melting. And often I’m alone, and the thought always likes to come in and play a starring role in my mind that “You’re gonna die here dude, all alone. Bummer.” Thank you brain, that is really helpful right now. Maybe you could tell me about the worlds water shortage and then also show me some pictures of my friends on vacation. It’s not a true thought in the least, I never seem to die. Hah. And a crash will not kill me. I’m just mentally and emotionally wobbly when my body starts going down sometimes, and there’s not a lot to do. Often if I just sit and breathe and hear something reassuring, like “It’s going to be OK. Take it easy. This will pass.” …The most basic lines ever, I’ll usually be back to my normal crazy self in no time. But it’s difficult to convey what you need sometimes. I can only imagine how hard it is from the outside and I can’t pretend that dating me and my whole….situation…is easy. But what can you do but give it a go. Sometimes it works and sometimes it doesn’t. The important thing always to remember, is it will be OK. And sometimes I just have to repeat that phrase to myself so I remember it and I get a hold of all the useless thoughts floating around up there, like “You’re gonna die man!!!!” No brain, I’m not gonna die. I’m gonna be OK.
In the meantime, things can become really hard. They can suck a whole lot. But then it stops sucking, and you keep your eyes open and you keep truckin and life will surprise you. I’ve learned over the long haul: nothing in the last 6 years has been a plan of mine or the result of careful design on my part. I just have to stay open to the possibility of good things, and truthfully, they always seem to find a way in.
If you’re having a rough…whatever, hang in there. It happens. But it doesn’t stay.
Health, Happiness, Bananas