Friday, July 26, 2013

My Slowly Recalcifying Exoskeleton

Consider the hermit crab

I've been trying to think of how to characterize the last few months of my life. They've been weird. They've been fun. They’ve been made up of things more readily identifiable as "life" than the past two and half years have been. I've been hanging out with friends sometimes, taking a fiction class, and (in the kind of revolution that monuments are built to and parades celebrate the anniversary of) I’ve been having a sex life again. The Internet age is very kind to the modern invalid; I still haven't left my house for any of this. I've been feeling a little better, but not much. It's more of a shift of perspective than physical health. 

It's been an interesting few months. Going from complete hermit to just mostly a hermit is a bumpy process. I'm glad my era of isolation is ending, but I must admit it’s been great in lots of ways. Inwardness has been necessary, and actually sort of productive. There's a lot to be said for completely losing your perspective by not looking through anyone else's eyes for a while. I couldn’t have reached the kind of acceptance I have if there were lots of healthy people around to compare myself to.

Healthy people. Doing their stupid healthy-people activities, thinking their healthy-thoughts and making their healthy-assumptions, having their healthy-people problems that I always imagine I'd trade them for, but probably wouldn't. Living among them, I either wore myself out trying to keep up or felt horribly deprived when I needed to rest. I've had my incredibly supportive family and my good long-distance friends these past years, but I’ve been isolated enough to forget about the standards of the healthy world for a while. Sometimes it almost feels like I'm not even sick; I'm just another Kansas weirdo, living the life of a privileged, artsy eccentric.

Of course, when I did open my life back up to the healthy world again, jealousy came back. I was surprised. I thought the God-cursing, fist-shaking-at-sky, impotent-rage-and-despair thing wasn’t my style anymore. But confronted with evidence that most people can do things like take walks and support themselves financially, my life seemed shabby again. It took a while to readjust, but I did. Again. I'm guessing that I'm going to have to readjust many times in the process of getting better.

The other great thing about isolation, particularly when you have a mysterious illness, is that you don't have to deal with people's stupid ideas about it. It takes a lot of mental energy to protect yourself from the misconceptions about CFS: the "CFS is a mental illness" school of thought, the "get a job you lazy fuck" school of thought. The, um, "I read your blog and all I could think was, ‘This girl just needs to get laid!’" school of thought (not entirely untrue, to be fair here, although sadly sex has yet to solve all my problems).

In the last two years, I've been able to insulate myself in a sort of conceptual nest, feathered only with ideas I find useful and healing, which I badly needed to do. In the beginning entries of this blog, I see myself struggling a lot with the internalized distrust people have for those with chronic fatigue syndrome. Invisible illnesses make people uncomfortable. We remind them of things they don't want to think about, like how fragile bodies are, and how arbitrary and illogical so much of life is. Basically, we’re all going to die someday! What a bummer! No wonder it's easier to think that illnesses are just massive character flaws.

It’s jarring to be confronted with the great "What do people think of me?!?" question again. It's an anxiety that accompanies almost everything anyone does, but due solely to the lack of people around, I haven't had to deal with it for a while. Being a hermit is GREAT in this regard, but it turns out that only interacting with people I love for two years induces quite a bit of naïveté, too. Now that I’m starting to hang out with people again, I tend to treat everyone as if they understand me perfectly and care about me a lot. I've often felt over the past few months like I'm walking around like a crustacean without an exoskeleton, exuding an almost irresponsible amount of earnestness, acting like interacting with another human being is the most exciting thing that’s happened to me in years, because it pretty much is. I enthusiastically tell people way-too-personal things, then cringe in retrospect and want to hide under a coral shelf. My claws are all floppy and my heart is hanging out for anybody to poke with a fork and dip in butter if they want to.

This excess of vulnerability is probably another inevitable part of the unhermiting process. People need defenses. We need reasonable amounts of vulnerability, too, or at least that's what I hear. It's a balance I’m out of practice with. I like solitude a lot and I wouldn't give it up even if I could; what I really want is all the benefits of how truly myself I am when I'm alone, AND all the new energy and ideas and experiences I get from other people. One benefit of CFS, and it's a major one, is that I simply don't have the energy to care as much what people think of me anymore. I still do care, of course, way too much, but it's becoming obvious how exhausting and inefficient that is, and I'm going to have to give it up if I'm going to do this non-recluse thing. Which I do want to do, because people are fun. I'm growing my exoskeleton back. Then I'm going to find a slightly bigger shell, haul it up on the beach, and interact the fuck out of the rest of the world.


  1. I love your exoskeleton analogy! I admire anyone brave enough to expose their guts and heart and be their true selves without a protective shell. Like what you're doing with your blog! Sounds like your experiences with shell-less communication is the healthy way, and it's the rest of the world that is maladjusted. :)

  2. Thanks, AJ! Although I think the conclusion I've reached is that some amount of shell is important, both for myself and others. I feel better when I'm not uncontrollably hemorrhaging earnestness, and it seems somewhat irresponsible to make other people deal with my floppy, buttery heart unless they explicitly chose to. I guess the best thing would be some kind of shield you can raise and lower at will, or a selectively permeable forcefield. I'm working on the perfect analogy. :)

  3. Maybe a bubble, one that automatically thickens or lessens in transparency based on the matching level of authenticity of the person on the other side? Hmmmm. It's funny, I was talking to my life coach about the need for protection when interacting with others, a few days before I read your post. (She brought up the bubble analogy.) I'm still searching for ways to find balance in this area, so when you come up with some more insights, I'm game to listen! :))

  4. Nice to see you back again, really enjoy your blog posts. Funnily enough I have just written a post myself that is in some ways connected to your ideas about people's assumptions.

    It is true that being out in the world is difficult, and jealousy-inducing, and solitude can often be seductive. It is not easy to achieve the right balance.

  5. Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam