Recovery

It’s been over a year and a half since my last posting. Back when I combed the Internet for fellow sickies’ thoughts, I’d come across archeological remains of blogs that the author seemed to have abandoned mid-thought, and I’d always wonder what had happened. Did the writer get so sick and dispirited that she faded away from everything? Or did she get wildly healthy, and never want to revisit her sick days again? I’d imagine that most people who heal from ME/CFS naturally drift away from the Internet haunts that sick people use, and so voices of those successfully recovering are vastly underrepresented. According to Blogger Stats, at least a few people still wander into my blog every day, and I don’t want to be a mystery. I’m the second type; over the past year and a half, I’ve recovered a great deal of my health. 

I want to write an entry to counterbalance all the sad stories in the small world of the ME/CFS Internet community, even if I can’t fully explain how I’ve gotten better. An old friend came into my life, through this blog in fact, who had been severely ill (Lyme and complications, ME) since he was 12, and had slowly put himself back together over a few years of uncompromising hard work. He showed me how much energy I had been wasting, physically, emotionally, and spiritually, and how to begin taking responsibility for it. Through example, love, and some good-hearted yelling, he showed me a number of alternatives, and also introduced some practices into my life (martial arts, exercise, sex, communication, even some kinds of video games) that have proven invaluable to getting into a life- and growth-oriented stream of things. 

A hike last winter in Vancouver, BC

I still have to be extremely careful with myself, and work hard every day to not fall back into old patterns that lead to illness. Most of my life is structured around recovery, and I suspect it always will be. Still, I can exercise for an hour almost every day, I went to school last semester and am preparing now for a job teaching English as a second language, I take walks, climb trees, cook, see friends, play Dance Dance Revolution, run errands, and other such miraculous things that I thought would never be part of my life again.  I weigh 25 more pounds than I used to, and I’m off all the many medications I used to take for insomnia, inflammation, depression, and anxiety. 

If this seems maddeningly vague, I understand; I haven’t really been able to articulate the details of how I got better even to my closest friends and family. I understand more than I can explain, and I don’t understand it all. Nevertheless, it happened, and if nothing else it proves that recovery is possible.

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.

FEELINGS

The Lost Art of Orthorexia

Speaking of all this food, my friend Marina pointed out that I have comics on the subject that are topical again. I’d totally forgotten about them, and my old comic blog, but I think it’s time to give them another airing.

I have great fondness for these drawings. I made them almost 5 years ago, as I was settling into Philly, and getting over the worst of my food-anxiety through cathartic cartooning. Sometimes you encounter something you made in the past with a disturbing bolt of recognition, and all you can think is, "Yup, that's what it was like, all right. That's me."

About the time I finished these, I ran across an old acquaintance in the New York Times. It's always strange when that happens, particularly when two unrelated people you know are mentioned in the same article. One was a boutique nutritionist I had been to in Massachusetts, and the other was Dr. Steven Bratman, the father of my long-lost childhood best friend, Claire. As a naturopathic doctor in the late 80s, Steven was always a hippie on the cutting edge, and now he was getting famous for naming a brand-new post-millennial eating disorder: “Orthorexia,” the unhealthy obsession with eating only pure and healthy foods.

What is the deal with eating disorders and irony? The wealthiest countries are the ones who starve themselves, the most put-together perfectionists vomit all over themselves, and the single-minded pursuit of physical health destroys your physical health, through that tricky back door of your brain. I got really excited that the guy who mowed mazes into his yard and directed an epic first-grade production of “The Wizard of Oz" in his living room had now identified an eating disorder I'd struggled with for years. I thought about contacting him and showing him how I'd illustrated his disease, but I never did. He probably would've liked to hear from me, but it was one of those plans whose moment passes, and the next health problem distracts you from.

One childhood memory the good doctor probably doesn't know about: Claire and I were both raised in strictly health-conscious households, where sugar was a rare and special event. Therefore, sugar was all we wanted. Whenever we were given sweets, by strangers or on "treat nights” by our parents, we would squirrel them away in our rooms. I used to draw maps to where the candy was hidden on sticky notes, then hide the maps in my closet. My discipline was military; I never ate the candy. Every few months, when we'd stockpiled enough, I would sneak it out in a basket covered with My Little Ponies, and Claire and I would have a wild sugar-orgy of a slumber party. It was probably the most disgusting form of sugar we could ingest: rock-hard gummy bears, graying chocolate, stale Halloween candy and sugar cubes and Easter decorations. I don't remember the copious vomiting, but when I saw Claire for the last time, when we were teenagers, she assured me that copious vomiting was an integral part of the experience. I remember these mostly as really fun nights.

Here are the comics:

Cults and Ex-Boyfriends

I asked my friend Holly, who is also my Rolfer, to give me an objective, big-picture assessment of some joint pain I've been having. She's a smart healer, and she's known me a long time, and I was hoping to get from her the kind of macro-information that is almost impossible to get from specialists. For instance, how many times do you have to go to a chiropractor before you can confirm she is a charlatan? If the joints in your left leg have hurt mysteriously for two years, is it reasonable to expect anything to help, at all, ever? If both moving and not moving my leg hurts, what should I do?

I wasn't asking about chronic fatigue syndrome, which is just a given at this point. I was asking about pain specific enough to have a cause, although like everything else I've ever experienced in my body, the cause is mysterious. Instead of answering, she started talking about something that I never want to hear about in the context of healing again: a special diet. She thought that digestive system health was the big picture, and kept going on about intestinal flora, body ecology, the breakdown of carbohydrates, fermentation, leaky guts, etc.

So, she’s one of those people. I tried to conceal my disappointment, though I didn't do a very good job. I asked her if she knew that nutrition was a cult. She politely disagreed. I asked her if she knew that the vast majority of reasonably healthy people eat reasonably normal food, and she said that healthy people can do a lot of things that sick people can't. Okay, I'll give her that, but did she know that people on special diets are just hippie prima donnas who love having the most inconvenient diets possible, are intellectual cowards who can't accept that their bodies can't be absolutely controlled by food, are adults playing pretend and taking meaningless action just to be doing something, are neurotic obsessive-compulsives grateful for something to focus on besides their real problems, are crazy fucking food-perverts who get off in an almost sexual way on depriving themselves, like some sick fucking medieval self-flagellating purity-obsessed barefoot ascetic nun? Did she know this? Huh? Because it's true. Then I started crying.

The truth is, I hate special diets, and I hate the people who are on special diets, for the only reason that I can ever seriously hate anything: I used to believe in it. In the first six years of being ill, I think I tried every hippie diet in every hippie diet book I could find. I guess the several-years-of-panicked-fruitless-health-regimens is just a stage every chronically ill person goes through. I have some very bad memories of the allergen-free diet in Portland, the anti-Candida diet in Massachusetts, and the paleo diet in Philadelphia, before I finally gave up. I started eating normal-person food, and I started to feel like a normal person.

The only thing I ever got out of this healing was stress, dangerous weight loss, and the feelings mentioned above. At different points, I fell in with people who had similar “healing diets”/fake allergies/eating disorders/food fetishes, and we encouraged each other. I think I spent more time thinking about, talking about, fermenting, soaking, growing, buying, cooking, and planning food than any person in a non-hunter gatherer society should ever have to do. The enjoyment of food, of course, had an inverse relationship to how much time I spent obsessing. I sort of hated the actual eating of the food. It made me nervous and resentful. There were so many ways to get it wrong.

I've done this a lot in my life. I don't just believe in things, I become a true believer.  There is a streak of religious fanaticism in me that can attach itself to almost anything. I'm not looking for something that might be a positive force in my life, something to try it out and see. I'm looking for ultimate salvation.  When I come across concepts or practices or regimens that seem to offer it, I swallow them without chewing and take them to their furthest extreme. And then, when they inevitably fail, I repudiate them completely.

A concise list of things that I currently hate: healing diets, alternative medicine, acupuncture, veganism, radical politics and the young white people yelling about them, Portland, Oregon, anarchist punks, Buddhism, spiritual communities, Vipassana meditation. There's a lot more than this, of course, but these are the things that fill me with a seething, city-destroying rage, or at least a smug sense of superiority. It's an overcompensation for the betrayal and embarassment I feel, since I believed in these things so wholeheartedly, and they failed to save me. I'm ashamed that I was ever so credulous and naïve, and so willing to abdicate responsibility and install a program to run my life. It also reminds me of the pain I was in that made me desperately seek salvation in the first place.

When I told Holly about my List of Hates, she said it reminded her of a list of ex-boyfriends who I think damaged me in some way, and whom I'm still mad at. I think it's an apt analogy. These were some very unhealthy relationships. The romances between me and my ideologies burned brightly and died fast. Now we can't be in the same room together without causing a scene. It's embarrassing for everyone.

I want to stop hating these things. They don't deserve it. Everything I hate is mostly good. Some of the things that I hate are laughably wonderful, like acoustic guitar. I miss that! Think about everything I'm shutting myself off from by hating so much. What's more, it's not just the –isms that I hate, in practical application it's also the –ists, who definitely don't deserve it. They are usually good people whose only crime is reminding me of myself. I don't want to hate my past self. I don’t want imagine myself in the future, hating my present self. Maybe all this hate is unnecessary.

So, I might change my diet. It's not unreasonable to suppose that what you eat has an impact on your life in some way. Maybe I'll do it and see how I feel, and treat it as a thing that I'm trying, not the ultimate transcendental truth of what it means to be a human being that will save me forever. Knowing that I can make a cult out of anything, I really value my skepticism these days, especially about the things that seem to be working. I have a strong distrust of almost everything that is making me happy lately, and that's just fine. Let present happiness be tentative and ever-shifting, not solid unbreakable ideals that don't actually exist. If nothing else, it will mean less to hate later.

My Big Night Out

Two related things happened recently. I turned 30, and I went out at night for the first time in two years. It's taken me a while to write about it, because it's taking me a while to recover. I've been taking the time in bed, as usual, to have thoughts about it.

I should say first that yes, it is objectively wonderful that I could leave my house, sit upright in a chair, and hang out in public for over two hours. Back when I was only half-sick, I used to read blogs where people wrote rapturously about their once-yearly nights out, and I couldn't imagine a life like that. I thought if I ever got that bad, I'd want to die. Now that I've crossed that divide, and I know that life with this kind of illness is indeed possible, I am genuinely grateful that I was able to go out on my 30th birthday. I'm 30 years old, and I definitely don't want to die.

I am increasingly able to will myself into a few hours of health, and I choose these hours carefully. Spending my 30th birthday alone and in bed was too disheartening to be an option. My family wanted to take me out somewhere, and I was determined to let them.  I did nothing for days, in preparation. We went to Teller’s, a restaurant I chose because of architecture. It's in a building downtown that used to be an Art Deco bank, the kind of place I could imagine classy gangsters robbing. It has impressive pillars and a three-story ceiling. In a life as claustrophobic as mine, high ceilings mean a lot. I spent much of the night craning my neck up to stare at the great expanse of air and space above me, like a rube encountering a skyscraper. The light was pink and dim, making the artsy waitstaff look even more attractive than usual.

The isolation of illness makes doing normal things, like eating a meal in a restaurant, seem bizarre and surreal. Look at all these people! Strangers! More people than I've seen together in a long time! Many more people fit in a restaurant than in a doctor's waiting room, or my mom' s house. They all look so well-groomed and upwardly mobile. They all seem so natural, eating and talking, like they do it every day. Walking like it's no big deal. They probably have "jobs" and stuff. Some of them are on "dates." It's like looking through the glass at an aquarium.

Except it's not. Sitting in the restaurant also felt perfectly normal, and the normalcy itself added to the weirdness. Two years isn't really that long, and in my mind, I've never really left the world of the healthy. I felt like I was doing an excellent impersonation of a normal human being. I ordered scallops and risotto like a pro, and made small talk like a returning champion. I ate a piece of chocolate cake and got an Oscar and standing ovation.

Relatively late in life, I've discovered a love of occasional light drinking. Everyone around me is very encouraging of this. What I especially love about it is that after half a glass, I feel my body, but I can ignore it. The "occasional" is key. Here I am on my big night out, next to my friend Jonathan, having ordered in my inexperience a sweet, girly cocktail that I had to convince my brother to drink for me. After that, I had a whole glass of white wine, by myself. I stopped drinking at 19, and in my 20s I was either too Buddhist or too afraid of illness to drink alcohol. So hanging out in bars is still novel and exciting. I failed at my first cocktail, but I will persevere. Jonathan offered to show me the bars in Lawrence that the college students don't know about. I was happy to be invited.

Jonathan is one of my few friends in town, and though we don't see each other often, he's been the only guest at several of my birthday parties. I think the awkwardness and the tradition appeal to both of us. He's been a father for most of his 20s, and we have a lot of conversations about how relative age is, and how our lives are constrained in ways that most of our peers’ lives aren't. Our 20s weren't what we expected them to be. I don't know what my expectations were exactly, but I know that this decade has defied them. Sometimes I think I tried to stay a teenager until I abruptly turned 90 years old at the age of 27.

I can be pretty ashamed of my Peter Pan syndrome, but it's also hard to pick a career and “go forward”or whatever it is you're supposed to be doing with your 20s when you're sick all the time. I kept thinking that in a few months I would get better, and be able to commit to something. I thought that for years. I fueled my personal economy on low-hour teaching jobs and grandparents dying. I moved to a lot of different cities, and spent what energy I had on friends and fun, which I considered desperate necessities. I guess I achieved what I set out to achieve; I made really good friends, and we had a lot of fun. Many of the friends are still around. It's easy to look back with regrets, and it's also easy to look back and see every decision you made as absolutely inevitable. I won't say my youth was entirely misspent.

I am much older and wiser now than I was two weeks ago, when I turned 30. Despite being generally glad to be rid of my 20s, many days of crying buffered each side of my birthday. A typical case of 2.5–wave feminism grappling with and losing to three decades of media conditioning. A tally of my material achievements over the last 30 years, coming up short. Unfavorable comparisons. Gravity. Loneliness. Etc.

But I don't feel bad about it anymore. Feeling feelings when you turn 30 is an inevitable stage one has to go through, if everyone older than me is to be believed. It's a chance to look back over my life and let go of everything that doesn't apply to me anymore, which is almost everything. I think about how I haven't done what I wanted to do yet, but I still have as much time as I can remember, and more. There are achievements I can tally if I must; they are mostly invisible, but they are real. I'm always dismissing the invisible, although it encompasses almost everything of value.

Also, unlike most people whose bodies decline as they age, mine is getting stronger. Like that guy, from the movie, based on the short story that F. Scott Fitzgerald apologized for writing: I'm aging backwards. I could go out to dinner a few weeks ago! If current trends continue, who knows what I will be capable of a year from now? Wondrous things, no doubt. There are also wondrous things that I can do now. 30 years old: Totally glad I'm not dead.

Upon Repulsion from Art, or, The Very Meaning of Life Itself

I wish I'd spent more time on this blog ranting about how much I love Michael Nobbs. He's a Welsh artist with Chronic Fatigue Syndrome, and he runs a website community about CFS and art. It's convenient, since CFS and art are basically all I think about. In a stunning feat of Jungian synchronicity, he and I are doing the same thing right now. We are doing absolutely nothing. We aren't making art, because we don't feel like it. I'm glad I have company in this, because it's terrifying. 

A few weeks ago, making art suddenly stopped being fun. In the midst of my newfound discipline of daily fiction writing, the joy evaporated completely. It wasn't just writing’s periodic spiral into neurotic, self-flagellating insecurity. That's no big deal. I'm well aware of my perfectionism, judgment, and lack of patience with myself. I'm getting better about that, and usually I don't care if I'm writing crap, because it's fun to make stuff up. This was something deeper and bigger and more disturbing. When you've come to rely on that mysterious feeling of creative satisfaction, what do you do when it goes away?

Artists are supposed to be intuitive, so what if your intuition says stop making art? Do you have to obey it? Please, God, say it isn't so. Please, Mysterious Intuitive Creative Force, don't make me stop. I hate stopping. All I ever do is stop. And now, just when I've found something that I like, something that gives me hope, something that makes me feel like less of a useless lump under the covers, the one thing that I can ACTUALLY DO, the one thing that brings ONE SMALL OUNCE OF MEANING to my STUPID INVALID LIFE, you want me to stop?!? You take away all joy from it, and send me back to bed. Fuck you, intuition. But you can’t say “fuck you” to your intuition. I stopped. 

So I’ve been thinking about my life, suddenly devoid of meaning because I now hate making art, and I’ve had some ideas about it. Creativity has always been a fetish for me. I've never been more than a dilettante, but creativity has always been what I care about the most. It's what I've demanded from myself, and what I've demanded from my friends, to be worth my time. I've had wondrous, important, beautiful moments of making art, as well as horrifying and despairing moments. I've been scared of it, and scared of my desire for it, and fear and desire have inflated it to monstrous proportions. It's become something it was never meant to be.

 I've always been desperately searching everywhere for The Thing to Do with My Life. I was so excited at this latest idea, that maybe I could find it in art. Wouldn't that be comforting, if I could just think of myself as an artist, and have that be my identity, my security, my meaning in life? CFS has taken away most of my abilities, and I'd like to say it has taught me to value myself because I am a human being, not because of what I can make or do. But instead of getting off the treadmill, I have readjusted to its smaller proportions.

It's an old formula, and I think it's almost always true. Take something you love, turn it into something you need, and it becomes something you hate. Especially since becoming housebound, I've been looking to art to give my life meaning. But it doesn't, and it can't. Art, as I make it, is tiny, tentative, embryonic, inexpert, bumbling, delicate, and new. It's like a little kid barely out of diapers, and I'm asking it to support my entire life. It can make me happy sometimes, but it can't give my life meaning. It can barely feed itself. It collapses under that kind of pressure.

If I want to be an artist, or a sane human being, I’m going to have to change my entire relationship with art. I'm going to have to stop making impossible demands of it. I think I could just let art be itself, with no greater meaning than being itself. How can I learn to enjoy the abilities I still have, like imagination, without gripping them so hard I choke them to death? How do I untangle my identity from what I can make and do? What does identity even mean, to the sick or the healthy?  I thought illness would make me wise, but I really don't know. I should probably stop trying to answer impossible existential questions about the meaning of life.

In conclusion, an existentialist manifesto about the meaning of life:

Art can't give your life meaning. Writing, music, painting, theater, and dance can't give your life meaning. Friends can't give your life meaning. Jobs can't give your life meaning. Being a daughter or a wife or husband or a parent can't give your life meaning. Political allegiance can't give your life meaning. Sex can't give your life meaning. Loving someone can't give your life meaning. Hating someone can't give your life meaning. Nothing can give your life meaning. It just has meaning. Meaning is just an inborn quality of life. What is that meaning? I don't know, I think it's just meaning. So stop trying so hard to find it, and stop freaking the fuck out.