Mental Illness and Relativity

As I mentioned a few posts ago, at the beginning of December I started a new medication, and it worked. It worked better than I dreamed it would, and it’s continued to work. I still have bad days, usually when the weather is icky. I’m not sure science will ever unlock the mystery of the relationship between weather and health; I’m not sure scientists give it as much credit as it deserves. However, my good days increasingly outnumber the bad ones.

This is new and strange. Perhaps the strangest thing is how much time I suddenly seem to have.

Mental illness is a time sink. I could fall into social media or casual games for hours and hours on end, and then when I lifted my head to see the sun setting wonder what happened to the day. I’d remember when I was younger, even as recently as ten years ago, accomplishing so much in a day. Getting up and not taking hours to move beyond drinking coffee and checking my notifications. Putting on clothes and going downtown, going for a walk, working in the garden, doing the daily maintenance on my home, cooking elaborate meals. Depression and anxiety, the two main manifestations of my mental illness, have limited me by limiting my time. Dragging myself out of the Internet and putting down my phone has often seemed a Sisyphean task, the effort only gaining me minutes of clear space before those twin rocks forced me back on line.

I have had a love/hate relationship with those rocks. They are smooth, presenting no challenges other than their existence. They have kept me safe from interacting with things I’m not ready to face. I think many mental illnesses still exist, evolutionarily speaking, because they DO keep people safe and keep the broken parts from grinding together; it’s just when they take over and become chronic illnesses rather than temporary traits that they become more problematic. On the other hand, I sometimes (frequently) have remembered times of being more functional and wondered, “Is this it? Is this as good as it gets? Is this my life now?” Living with an uncontrolled mental illness is brutal and unforgiving; there’s always a reason why it’s your own fault. There are always other people, more functional and successful people, with whom to compare yourself, so the things lacking in your life stand out in sharp contrast. It’s easy to forget that every day you survive is a victory.

With my mental illnesses in relative check, I have so much more time. The time starts right away, first thing in the morning. I sleep better. I don’t have to take a sedative every night just to find my way to dreams. I go to bed and get up at times more “normal” for me. I need less sleep, too–still a solid eight hours, but not nine or ten or more. I can even function for a day on six or so, as I did last week when I had jury duty, which is another task that would have been impossible for me even to face before. It doesn’t take me two hours to get up off the couch and wash my face. Where I used to see the sun set and wonder what had happened to the day, now I’m functioning before noon most days. It still instills me with a sense of wonder, but now I’m wondering what to do with all this time, rather than wondering where it all went. In the past little while, I’ve crocheted a hat for a friend, started work on a sweater for the same friend’s tortoise (so they can match), cooked more, cleaned more, picked up yoga again (until I injured my ankle, at least), even gotten a start on a couple writing projects. The last two have remained difficult, as are any dedicated creative endeavors; contacting my heart causes me pain that brings everything to a screeching halt. Last night I even went with my husband to an open mic he wanted to play at. I looked forward to it all day. I put on makeup! And I had a reasonable time, experiencing some feelings of annoyance and alienation, but not nearly the feelings I would have just a short time ago, when I’d have been ready to leave an event five minutes after walking in the door–if I went in the first place.

All these things may seem small to a person who hasn’t struggled as I’ve struggled the past 10+ years, but to me they’re huge. And people (my therapist, my med manager) have told me in the past that losing time was an aspect of my illness, but I really didn’t get it until now, when that time is spread gloriously before me. Depression sapped my will and my motivation to do anything at all. I couldn’t even see how dirty my house got until six months had passed since the last time I’d mopped the floor and I made myself do it because I simply couldn’t stand it anymore. Everything became a matter of “which is worse: doing or not doing? How much can I stand?” Anxiety crippled me with a sense of dread at the prospect of engaging with life on any level at all. Much better to fend it off with games, with chit-chat, with Netflix, with anything I could use to numb the fear.

I don’t fool myself that all this is gone now. As I said, I still have bad days, and those days are BAD. Perhaps the worst thing about them is slipping back into self blame and recrimination, all the unproductive ways of thinking that, though I’ve worked forty years to loosen their grip, still take hold of me at those times. That I’m irredeemably bad and awful, that I have no value, that I’m weak and lazy and all the rest. That life is grey and dreary and will continue to be so until the day I mercifully die. Those days, I simply have to grit my teeth and bear it, try not to listen to the messages, and do what I need to do to get through. I have no illusions that I could survive in a capitalist institution like a “normal” job, or that routine “work” wouldn’t send me back into the spiral of suicidal ideation. A warning sign is that even saying those things sounds to me like making excuses for laziness, and right now my brain is berating me for wanting “special treatment” and “wanting to be taken care of instead of carrying my own weight.” Those are the signs of my sickness, and I think I may never be altogether free of them.

But right now, there is time. In the words of T. S. Eliot, “Time for you and time for me; time yet for a hundred indecisions, and for a hundred visions and revisions before the taking of toast and tea.”* And those indecisions, visions, and revisions, don’t scare me to death. And that’s good.

I believe this is how Einstein explained relativity: “A minute looking at a pretty girl goes my in the blink of an eye, but a minute sitting on a hot stove lasts a lifetime.” For me, a day consumed by anxiety and depression passes in an instant, and a day without their weight expands with infinite possibility.

I much prefer the latter.

*From “The Love Song of J. Alfred Prufrock,” 1917

Reality Quicksand

A little while before Yule, my mental health medication provider suggested I try a new (new to me, that is; it’s actually quite old) medication for my anxiety.

Pause. I probably need to explain that my anxiety isn’t “normal.” It’s rare I experience invasive thoughts; though they can be a factor, they’re more likely to figure in my depressive episodes. Instead of that, or obsessing over perceived mistakes and subtext, I tend more toward a somatic experience of utter terror with no apparent connection to anything happening around me. My heart races, I feel sick at my stomach, I clench my jaw and fists, I feel driven to hide and make myself small, all without having any idea why and without anything having happened to trigger such a response. (This led my previous psychiatrist to scoff and tell me “You can’t be anxious without being anxious about something!”) The overall tension prevents me from sleeping; until recently I had to take a high dose of Temazepam every night to be able to sleep at all.

My med manager thought that this phenomenon was more a manifestation of my bipolar disorder taking the form of a mixed state where the manic side of things manifested as irritability and anxiety than of anxiety per se, and that it accentuated the symptoms of my CPTSD. The medication she suggested is indicated for controlling bipolar mania. Being rather at the end of my rope, and being all too aware that taking sleeping pills every night is not a good practice, I said, “What the hell; let’s give it a shot.” Since I’m notoriously resistant to drug treatment, neither of us expected much from the small dose she started me on.

However, the new med worked better than I had imagined. Within a couple doses, I had given up the sleeping pill except on especially stressful days, and by the time a couple of weeks passed, I felt more “myself” than I had in years. I started a new writing project. I committed to doing my physical therapy, even adding some extra yoga and Pilates to my morning routine. I pulled out my guitar and figured out the chord progression to a song I wanted to learn. None of it occasioned the overwhelming feelings of personal peril I’d come to expect.

Then I got sick, and I was seriously ill for almost three weeks. Still, when I started to recover, I went back to the activities I’d remembered I enjoyed. For a while. After a few days, the anxiety returned to torment me. But this time, I wasn’t sure if I’d become tolerant of the new medication, or if it was something else.

Today I’m fairly sure it’s something else. I’m equally sure that something else won’t respond to medication.

Yesterday, for the first time since starting the new med, I woke up and did not want to get out of bed. Everything seemed too hard. My life seemed overwhelming and bleak. All day I was barely functional, and today isn’t much better.

This may seem like a tangent, but it’s not: I follow a certain astrologer on social media, one who specializes in reading the planets and stars as they relate to my sign, Scorpio. This young woman is exceptionally gifted. I can honestly say I haven’t ever run across a better. (If you’re interested in this kind of thing, check out @ScorpioMystique on Twitter and Instagram. I think she has another account where she reads for other signs, but I can’t bring the handle to mind right now.) Yesterday, her horoscope mentioned the Full Moon energy and all its benefits, but added, “If you woke up feeling exhausted and emotionally drained…” and went on to mention several reasons this might be, notably having an unbalanced relationship between your professional life and your home life. I commented that I did, in fact, wake up emotionally drained and exhausted, but the balance question didn’t resonate. She answered, “What about your relationship with yourself? Maybe you need to focus more on self care.”

Ouch. That hit home. Self care is a difficult area for me. I never know what it is.

Today’s horoscope advises to “write down a list of your most pressing dreams and goals…what feels right for you.”

Great. I’m not so good at that, either.

After I started recovering from the Great Plague of 2016-17, when I brought my mind back around to what I wanted for myself and how to achieve it, well. That’s when the increased anxiety hit. And I know why. It’s because for nearly twenty years, I was programmed to believe my goals and what I wanted for my life were selfish and wrong. A lot of people in my circle will understand this. It seems to be part of The American Way. So practicing self-care, even when I know in my head it’s good and the right thing to do, is a horrible struggle against voices telling me I am bad and wrong. On top of that, because I’m fat and because I have a history of eating disorders (or maybe it’s brain chemistry in part, IDK), I have a tendency to A) never believe anything I do in terms of my physical being is enough and B) go overboard until I damage myself or burn out. And all of it spirals around and around in my brain until it literally incapacitates me and I have to curl up in a ball on the couch and cry.

Twenty-plus years of near constant gaslighting has turned my reality to quicksand: dangerous to navigate and prone to sucking me under to drown. And though my Buddhist college promoted being “grounded in quicksand” as a positive development, I can’t think they had any experience with the actuality, because it sucks. (I’m sure they meant it as a metaphor for non-attachment, but be real.)

Days when I’m on a more or less even keel, it isn’t so bad. The problem is, the more positive things I do for myself, the louder the negative voice get and the less steady I become. I go from getting up, having coffee and farting around on the Internet a bit, and doing my morning PT+ routine without much hassle to this:

Me: I’m not feeling so great today. Maybe self care looks like taking it easy.

Inner Voice: You can’t do that. If you skip PT ONE TIME, you’ll NEVER go back to it.

Me: Physical activity brings up a lot of shit for me and I don’t know if I can cope today.

Inner Voice: That’s because you’re a LAZY PIECE OF SHIT. You have to prove you’re NOT a LAZY PIECE OF SHIT by doing MORE PT!

Me: This conversation is really hurting me.

Inner Voice: You DESERVE to be hurt! You DESERVE to be punished! Excessive exercise is the only way of redeeming yourself!

Me: Don’t I deserve some comfort?

Inner Voice: Comfort is for LOSERS! How will you ever achieve anything if you concern yourself too much with being comfortable?

And on and on, until the warning that if I skip one day I’ll never accomplish anything again becomes a self-fulfilling prophecy as I try to shut out that awful voice and protect myself. It’s a fight I can’t win. Being gentle with myself and taking things slow, at the pace I need to be able to continue, becomes a sign of what a terrible failure I am. Everything I like is dangerous and tainted, because I can’t do it just a little; I have to do it until I’m exhausted and in pain.

Sometimes it goes the other direction. I get a creative tickle and think, “Huh, maybe I’d like to pull out my flute or my guitar.” And the awful voice says, “Yeah, you better. You realize it’s been five years since you played any music? What the hell is wrong with you? Some musician you are. How dare you pretend you are one!!” Same with writing, or physical activity, or anything I want to engage in in a positive way. It all gets weaponized against me.

Trying to describe this process makes my brain feel like it’s about to implode, by the way. And I don’t know what to do about it. I have no control. If I “give in” to the awful voice, things I love (or even like, or vaguely want to do) become punishments, and doing them reinforces the idea that I need to be punished. If I resist, I feel worse and worse as the voice gets louder and louder, until it encompasses every single thing about my day. Hungry? If I eat, I’m an evil glutton. Tired? If I sleep, I’m a lazy shit. The most human activities are transformed into crimes against nature, proving I have no right to exist at all.

Up until now, the only way I’ve found to get out of the cycle is to back off everything until my mood changes on its own. One day, if I hold out long enough, I’ll hit an upswing. Then I can start all over again. But this means I can never actually achieve anything, because I’m always taking two steps back for every step forward.

There are things I want out of my life. There always have been. I want to write again. I want to be in better physical shape. I want to look different than I do. At the risk of sounding less body-positive than I believe I am, I do want to shed some weight–not because society tells me that’s the only way I’ll ever have value, but because I don’t like the way my body feels at this weight. I want to get back to playing music, singing, growing a garden. And all those things…it’s like the only way I can protect them is not to do them at all, because if I admit to wanting them the awful voice will find a way to turn them against me. Turn every pleasure into pain.

I have no sword to cut this Gordian knot. I already know “just pushing through” is futile. I’ve tried that strategy over and over for going on thirty years and it doesn’t work.

Reality sucks me down like quicksand, and I drown.

Fractured Mirror

My husband is the front man for a popular local Blues band. The other day as he was preparing for the latest gig, singing under his breath to make sure the songs on the set list lined up, I said, “I have this fantasy, one day I’ll come to one of your gigs all done up, in spiky high heels, a new hair-do and makeup, and a shiny dress, and strut.”

I don’t get to many of my husband’s gigs, you see.  The place his band plays most often is ninety miles away, and he has to be there for set up and sound check at four o’clock for an eight-thirty show. With the show going to eleven-thirty, tear down, and the drive coming and going, he’s gone nearly twelve hours for every three-hour gig. Since we only have one car, I couldn’t arrive later or leave earlier. Twelve hours is a bit much for me to be hanging around with no place to decompress.

He said, “I’d like to see you strut up to the stage, pull me down, and start dancing with me.”

“The problem is,” I said, “that whenever I try stuff like that it never works. It doesn’t feel the way I want it to feel. I don’t get the reaction I expect, or I get no reaction at all.” I paused. “Of course, people say you should do things for yourself and not in hopes of some reaction.”

I was thinking about this conversation this morning as I did my physical therapy. About how things never turn out quite the way I want or expect them to. And it occurred to me: other people’s reactions, or lack thereof, aren’t exactly what puts me off from dressing up and showing off. It’s the fact that those reactions don’t line up with what I feel inside. That is, I don’t get the confirmation I’d like of my interior reality. The times in the past when I have tried to strut my stuff, I generally feel pretty good about it. If I don’t feel beautiful, or hot, or confident, I can’t make the effort in the first place. But inevitably, because I’m fat (i.e., I don’t match socially accepted beauty standards), or I don’t have the “right” clothes, or some reason I don’t know, people with whom I come into contact don’t react the way they would to a beautiful, hot, confident person. At best, they don’t react as if anything is different or special about me at all. At worst, they treat me as an object of derision, “Look at that pitiful fat woman who thinks she’s all that!”

It’s like looking in a funhouse mirror that, instead of showing me the beautiful, powerful woman I feel myself to be–the one I know myself to be, when I’m thinking properly–shows me a monster, or a Cubist painting with fifteen eyes and ears where the mouth should be. Or nothing at all.

broken-mirror

I’ve also experienced the opposite kind of distortion: times when I’ve gone out dancing just for me, not meaning to impress anyone or leave a mark, are invariably the times when some random, skanky dude starts hitting on me. It’s always the skanky dudes, never the ones you might feel reciprocal interest in. Or maybe all guys are skanky when you’re just trying to have a good time for yourself.

Both circumstances make it extremely hard to trust my perception of reality, and both have led me to armor myself when appearing in public. Worse, they’ve led me to pull farther and farther inside my shell because I can’t anticipate with any confidence what’s going to happen when I step outside. Sometimes weeks pass without my leaving the house. When I do leave, I’m always on the alert, always evaluating: what’s happening here? Is this person going to make some comment I’ll have to respond to? If they do, will it be one I’m prepared for, or something out of the blue? Can I go about my business in peace? Or do I have to be ready for something weird that hasn’t entered into my plans?

Outside my home, I’m never entirely sure what’s real or what’s going on. And I’m sure at least a portion of this is due to my having CPTSD, which got exponentially worse after my three years trying to front a band where one of the members had untreated Narcissistic Personality Disorder (in my opinion, which I think is valid. I had a lot of experience with this person upon which to base my armchair diagnosis). Going farther back, my entire childhood was spent among people who never let me have a feeling or experience of my own, but twisted my every expression to be about themselves.

I don’t know what to do about this, or even if there is anything I can do. Pushing forward in spite of what others might think hasn’t worked. I’ve only succeeded in becoming more uncomfortable and insecure, and the effort is more trouble than it’s worth. When you can’t see your reflection properly, why look in a mirror at all? Letting go of expectation from others and only doing things for myself is…well, I never held much with that advice. Once, when I was struggling with writer’s block because I despaired of ever being published, a therapist told me, “Don’t write to be published! Just write for yourself!” I told her, “Plants don’t live to be watered, but if they aren’t watered, they die just the same.” I think the whole idea of doing things only for oneself can only be valid if you already have a secure starting point. It completely dismisses the fact that human beings are social animals what want and need input from others to thrive. And without expectation of some response, why bother doing anything at all? Some people might have an undamaged core propulsion system, but I don’t.

Basically, right now this fractured mirror epiphany is an idea I need to meditate on and talk to my therapist about. But I wanted to write a little about it, so I didn’t forget I had the epiphany in the first place.

Thoughts for a New Year

When I was a little girl, I watched Olga Korbut compete in gymnastics at the Munich Olympics on TV. She was skilled and strong and beautiful, and I wanted to be her. I told my parents I wanted to take gymnastics lessons. They said,

“If your gym teacher says you’re good at gymnastics maybe we’ll consider paying for lessons.”

My heart sank. I already knew it would never happen. Two years previously I’d changed schools, and along with the new environment, I’d gone from loving gym class to positively dreading it. I wasn’t part of the “in” clique. The other girls bullied me mercilessly. Especially in the locker room, where they stole my clothes and threw them into the showers, then laughed at my body when I went to retrieve them. The gym teacher, a grey-haired woman made of steel and leather, looked the other way because I wasn’t a promising student. On the hockey field I was slow, big, clumsy. When we did the gymnastics unit in late winter, the uneven bars terrified me and I excelled in “uncool” areas like balance beam. Since the coach spent all her time with the girls on the bars, she’d never see the one place I did well.

No gymnastics lessons for me.

This kind of thing was par for the course in my family–at least, for me it was. Being so much younger than my siblings, especially my sisters, I never got a good picture of their early lives. If I wanted to do something, gaining the support of my parents, especially monetary support, meant providing proof I was already good at it, either in the form of a teacher’s recommendation, or in dedication unusual for a young child. And maybe this isn’t unusual. Just this morning, we ran into a friend at the doctor’s office who spoke of his daughter’s love of music. “If she keeps up, we’ll buy her a full-sized instrument in a couple of years,” he said. Knowing his family, however, I can’t help but think they supported their daughter in other ways before now. As a child, it seemed to me my parents were always throwing me into the deep end of the pool to see if I sank or swam (except when it came to actual swimming. There, my dad took care to see I knew how). If I swam, good; I’d earned the right to whatever I wanted to do. If not, too bad. I must not have wanted it very much in the first place.

Over forty years have passed since I watched Olga Korbut, and I still have trouble doing things simply because they bring me pleasure. I always seek the justification: Have I proven the right to engage in this activity by being incredibly skilled at it? By flying without a net far beyond the time any sane person would have sought one out or put one in place? Am I good? Really good; good enough to deserve to do what I love? A lot of the time I’m not even certain what it is that I DO love. It seems to me there are many activities I might enjoy, did I not have this need to be exceptional at them all the time. Hiking, camping, skiing, all kinds of physical things. In the realm of the physical, it isn’t just my early training holding me back; it’s the fact that, my body size being what it is, I feel I have to prove that all large people can succeed in being physical. That’s not to mention the whole other aspect of large people moving: that a large person moving must necessarily be trying to become less large. I know I would enjoy music more if I could sing for the sheer joy of it or pick up my flute without feeling I have to plunge straight into Bach’s Fourth Brandenburg Concerto or the Gravel Walk at top speed.

Because of all those things, I rarely engage in activities I suspect I might like, or have liked in the past. So I get more and more rusty at them until, far from being skilled, I’m quite terrible at them. And that’s more than reason not to do them some more. When I do engage, most often I feel none of the pleasure I hoped for, only grim effort. That’s almost worse. Doing anything at all becomes more trouble than it’s worth.

Worth. That concept again. The idea that what comes out of me doesn’t measure up to the investment.

In the coming year. I mean to focus on things I like more. I want to find the place where I can still like them, the place where I don’t have to prove anything to anyone. I want to have more fun. I want to remember that, in spite of struggle, not EVERYTHING is a struggle. Play is a good thing. Joy is a good thing. Not all activities have to “pan out” or “measure up” or “become” anything other than what they are in a single, brief moment. When I lose track of this fact, my life becomes one of unending struggle and brutality. Keeping track is hard. I’m often afraid if I don’t do the hard parts of life, no one will, and if I unclench my mind so that all the details I’ve arranged there have space to breathe and rattle around, then some will escape. Then, I think, no one will save me.

I don’t want to focus too much on the hard parts here. I know it’s a form of self-sabotage. There’s always an excuse not to do enjoyable or potentially enjoyable things. It would take too much effort I’d better spend elsewhere, I think, or How can I go swimming when I haven’t mopped the kitchen in a couple months, or But we have so many bills! As if sitting home and worrying about the bills will get them paid.

I want to nurture the enjoyment as I would a seedling, in hopes it will grow and flourish. I don’t know if it will work. But then, I’m trying to get away from the idea of only doing what I’m sure will work.

A final word: If you have kids, don’t make your support of their interests conditional. It’s crushing, and the damaging effects last a long, long time. Kids are smarter than people want to believe, and they know when your support is half-hearted or insincere. Put too many conditions on it, and they’re likely to conclude, as I did, that pursuing their interests is too much trouble and requires jumping through too many hoops. When I worked with autistic adults, one thing we tried to abide by as staff was never making primary reinforcement (Food, shelter, love) conditional on behavioral change. I think joy is just as much as primary reinforcer as any, and should be shared without strings attached.

 

What I Can’t Forgive

CW: Infertility, discussion of weight loss and eating disorders

If you’ve been around the fat activist or body positivity communities, you may have heard the axiom “What gets diagnosed in thin people gets prescribed for fat people.” What this means is the medical establishment often encourages fat people to engage in behaviors that would be seen as warning signs in thin people, or overlooks symptoms in fat people that would have them sending thin people to specialists, because ANYTHING is better than being fat, amirite?

For a person born female or assigned female at birth–by this I mean a person in possession of a uterus and ovaries and all those childbearing parts–a BIG warning sign is the cessation of menstrual periods before the age of normal menopause, which, in the United States, is 48-54 years. It often occurs in women with eating disorders, both because of weight loss and the tendency to engage in excessive exercise. Generally speaking, it takes a loss of 10% of body weight to cause amenorrhea.

Let’s look at those numbers. Say a woman who weighs 125 lbs loses 10% of her body weight, or 12.5 lbs. This leaves her weighing 112.5 lbs. If she’s 5’6″, which is an average height in the US, her BMI would be 18. (Personally I despise the BMI as a rating of anything, but it’s what the medical establishment uses, so.) Hey, that’s underweight! Better address that.

Now let’s apply the same reasoning to another 5’6″ tall woman who weighs 200 lbs. She loses 10% of her body weight, or 20 lbs, bringing her weight to 180. Her BMI is now 29. Guess what? She’s still overweight. It doesn’t matter how she lost the weight, or whether she engages in ritualistic eating patterns, or if her periods have stopped. No one will even ask about that. She has to lose over 60 more lbs (achieve a weight of 115 or less) before she hits underweight. I personally know people who started out average, who’ve been hospitalized for an eating disorder at that weight. But if you start out fat, you’ll be congratulated. If you live.

I started menstruating at twelve, and I stopped at fourteen. For five and a half years. My eating disorder hadn’t yet kicked into full force when it happened; I think I’d dropped from 145 lbs to 130. Perfectly within the normal range for a 5’7″ adolescent, despite the way my pediatrician “tsked” over my being “tubby.” No one commented on it. I was just as glad, frankly. Issues of sex and reproduction and sticky fluids disgusted my mother, who left it to the sixth grade film strip to explain matters. When I needed sanitary supplies, I took them from her box of Kotex in the hall closet without mentioning it to anyone. She didn’t hit menopause until after my cycles stopped, so that was convenient. I doubt my dad ever thought about it, despite being the one who did all the shopping for our family. Maybe he believed I got my own supplies somehow. How he thought I achieved this, having no money of my own, I have no idea. My pediatrician complimented me on “slimming down;” later, when I got a bit too thin for his liking, he sent me home with cases of liquid nutritional supplements. They piled up in the pantry, untouched.

Common wisdom is that your cycles are supposed to start again once you gain weight. Mine didn’t. It took a therapist’s intervention and several courses of Provera before that happened.

The reason I rehearse all this old, old information is this: the exact same thing happened the last time I turned my will toward losing a bunch of weight. I was bigger than I’d ever been (though not as big as I am now), and I hated it. More, I hated myself for it. I tried to talk to my then-psychiatrist; I wanted him to understand why it was so difficult and loaded a topic. Despite knowing I’d almost died of anorexia, he just said, “Well, you know how to lose weight. Eat less and be more active. If you really care about your weight, you need to do what’s necessary, not whine about it.”

Deep breath. Can I just take a moment to say how despicable it is for anyone in mental health to use the words “If you really care…?”

Anyway. It took a while, but I decided he probably knew best–he was the doctor, after all. Maybe I was just whining because I was lazy. So, I joined Weight Watchers and boosted my activity. A lot. It worked for a long while. I lost so much weight in the first few weeks that clothes I had just bought fell off of me. And my periods stopped. Again.

That was almost exactly ten years ago; I was forty-four. And while that’s not an unreasonable age to hit menopause, it isn’t quite normal, nor is it normal for women in my genetic line. My mom had cycles well into her fifties, and one of my sisters had her last child at forty-one. I asked my psychiatrist if one of my medications could have caused it; he said no. I asked my primary; she said it was probably perimenopause and my periods would probably be irregular for a number of years, blah, blah, blah, the usual stuff. Which didn’t make any sense to me; they didn’t get irregular, they simply stopped. But no one related it to my weight loss, which, incidentally, they praised. I didn’t bring it up because I was proud of it, and I didn’t want to hear that for some inexplicable reason my body reacts to the slightest weight loss by becoming infertile, which I suspected, and had since I was a teenager. There was still the matter of believing I’d have children some day, despite my age and my mental health issues.

Much later, an acupuncturist told me it probably was the weight loss rather than my age that caused my cycles to stop just then. She may have been saying that to make me feel better, I don’t know. I do know the main reason I stopped “watching my weight” and “let myself” get fat again was that I hoped desperately that, by some magic, it would restore my fertility. It didn’t. The lack of ANY other menopausal symptoms let me hope for a long time, but I’m coming to the place where I think I have to accept that I blew it; I missed my chance for children of my own. It’s hard. I’ve swallowed a lot of bad stuff in my life, but this one…I just can’t seem to get it down. And people suggest adoption (too expensive) or fostering (no space for a person older than three, and I have doubts that we’d pass muster as a foster family), or working with Partners or some other volunteer group, and none of that is what I want. Humility aside, my husband and I are intelligent and educated and self-aware, and I wanted to keep that genetic code in the pool. Too many stupid people breed. I really think that, so sue me.

I can’t forgive my doctors of ten years past for blowing me off. For giving me the easy answers, whether or not they were true (I found out later that Depakote, the mood stabilizer I took at the time and that I’m taking now, has been known to cause PCOS and infertility. I stopped taking it for a long time because of that). For not saying, “Hey, you have a history of anorexia and you’ve lost over 10% of your body weight. Maybe there’s something in that.” I can’t forgive the medical establishment for privileging a specific body size and type over actual health, to the point where the health concerns of those outside that type are routinely ignored. Even at my lowest weight recently, I was still “overweight” by a few points. So obviously there could have been no connection between my early amenorrhea and my weight loss.

But most of all, I can’t forgive myself. As much as I repeat to myself I was in a bad state and in no condition to challenge those with perceived power over me, I can’t forgive myself for not doing it. I can’t forgive myself for not pointing out the correlation between my weight loss and the cessation of my cycles, for not bringing up the similarity to my previous experience. Maybe it wouldn’t have made a difference. At least I would have tried. The thought haunts me, the same way it haunts me how readily I crumpled after two miscarriages when I know women who’ve had three, five, ten, and gone on to have healthy children. Even women in their late forties. As I would have been, had I spoken up.

And sure, there would have been obstacles. Maybe a lot of them. There still would have been my mental health and the financial burden to address, the need to talk my husband around; I might not have been capable of those things. Some people think it’s “selfish” for older parents to have children; there would have been that judgment to face, along with all the judgments parents face. That’s if I even managed to carry a pregnancy to term, no telling what more failures would have done to me. I thought at the time I couldn’t face another miscarriage. Now I see that as cowardice.

Aslan, the godlike Lion in C. S. Lewis’s Narnia books, always tells the human characters, “You can never know what might have been.” My imagination amply provides me with “might have beens” every day, and none of them seem worse than where I am right now. I’d give everything I have for one more chance.

I think this grief and blame and regret will follow me the rest of my days.

 

 

What If?

A week ago, I had my first physical therapy appointment. I can’t remember if I’ve mentioned it before, but for the last few years I’ve experienced a grinding pain in my right ankle joint when I walk more than a few blocks, as well as moderate to severe back pain when I’m on my feet for any length of time. Once again, because of my background in dance, I know what causes these things. Some of my family, myself included, have a congenital misalignment of the hip joint that causes all kinds of messed up things–knees that turn in and rotated calf muscles and the like. You can see it in pictures going back for years; my dad had it. It causes a person’s feet to pronate (flatten), which, in turn, makes the outer ankle joint grind. The back pain is because I’ve been sedentary so long my abdominal and core muscles have atrophied, so I hyper extend my pelvis. Simple.

Anyway, I asked my doctor for a physical therapy referral, which she was happy to provide. Even when I know what’s going on and what to do about it, I have some idea that those things will be easier if someone else tells me to do them. And it’s often true. When I was more bought in to societal messages about weight and health and all that, it was easier for me to pursue a “healthier” lifestyle. Now I’ve shed a lot of those beliefs, most of the time I simply don’t care whether I’m healthy or not.

The appointment went about as I expected. I didn’t get a lot of new information. My feet are strong enough, but my joints and tendons are looser than “normal,” so, when I gained a lot of weight and lost muscle, they gave way. The PT recommended orthotics, prescribed some mild exercises, and told me to come back in ten days.

While he was writing up my plan (such as it was), I had a thought: “What if taking care of my health is my job right now?” What if it’s what I need to do for myself, whether or not I care or feel interested and motivated? Just because taking care of one’s health to the best of one’s ability is a sensible and objectively good thing to do? Leaving aside complications of the way the Western medical industry is constructed and its tendency to cling to a priori assumptions about what constitutes health, as well as the myth that you can judge someone’s health by looking at them, isn’t that a uniquely human thing to do?

The question upset and terrified me. Trying to explain to my husband reduced me to incoherent tears. In the first place, something about ongoing and seemingly never-ending processes instills me with existential and primal horror. I have no idea why this is. A common selling point of a lot of fad diets and weight loss systems is the phrase, “Not a diet, but a lifestyle change!” Maybe there’s a connection there; I hate that rhetoric because I question the value of the lifestyle it promotes, or I view a “lifestyle change” as… I honestly do not know. When I think about it, I think of the final challenge in Indiana Jones and the Last Crusade, where Indy comes to the precipitous edge of what looks like an abyss between himself and his goal. Remembering the clue about faith, he steps into what seems like thin air; the camera angle shifts to reveal a narrow stone bridge across the gap, its stones so close in color and shape to those of the abyss walls as to provide perfect camouflage. Indy, of course, scatters dust before him to make his path clear, and reaches the Grail. For me, that invisible bridge never ends and no Grail exists. I walk on air forever and ever, only faith keeping me aloft.

Or maybe I’m more like a cartoon character, who can walk off the edge of the cliff, unencumbered by the laws of gravity until they look down.

Whatever the source, as I said, the idea of going on forever and never reaching a destination is intensely awful to me, so awful I had to walk away from this post for an entire day after writing the previous paragraph. No rest, no home, no ability to stop or sit down. Isn’t that the theme of some enduring folktales, like the Wandering Dutchman? Don’t some believe the traveling people were cursed?

Another reason the idea of “working on my health” upsets me is it brings up the eternal question, “What then?” What if I do become healthier? What if I regain the stamina I’ve lost, build muscle, stop having back pain, find a way to regulate my weird hunger issues and all that? Do I even care about that? No one has any obligation to “be healthy” on anyone’s terms, especially not anyone else’s. Do I really think it will improve my life to go through all this? And then to have to keep repeating the same patterns over and over until I die (because you can’t just do any of this stuff once and be done; I learned that in the six years I sat on my ass)? The honest answer is I don’t. I think having a few minimal comforts in my life and not being surrounded by overtly abusive people is as good as it gets.

That kind of leads to the third reason this “what if?” question upsets me: It hurts. It leads into thoughts I don’t want to explore and emotions I don’t want to feel. You wouldn’t think 20 reps of a simple exercise on each leg and 2 minutes of another for each foot twice a day would be so difficult, but it’s emotionally excruciating for me to keep them up. I forget. I procrastinate. I make excuses. ANYTHING to avoid doing them.

I think of myself as an open book, but the truth is, I’ve spent the last 15+ years in stasis, like a person in a Science Fiction novel with an incurable disease, who gets frozen until technology catches up. The stasis wasn’t perfect. I lost weight and gained it. I aged. I didn’t look my age, and maybe I still don’t, but lately I’ve noticed wrinkles beneath my eyes in the mornings, creases above my upper lip. It kept me from dying, though. So far. Now I’m out of stasis, gods know why, because there doesn’t seem to be any cure yet. And things that happened (or didn’t) while I was in stasis still affected me. I’m angry, but I don’t know how to be angry, so I’m just in pain. I want to go back into my box. I want it to stop.

When I was young, my one goal was survival. Sometimes I lost track of that, notably when I was anorexic. Not coincidentally, I think, this was when I lost the ability to care much about anything, but when I “recovered” enough not to need hospitalization, my goal was the same: survive until I could get out of an intolerable situation and be my true self. The older I get, the less sure I am of what my true self is, or if it even exists. I have a consistent feeling the life I have is not the one I was supposed to have, though I’m unable to articulate what “the one I was supposed to have” looks like. I’ve never been career-minded. I’ve never had much ambition. Maybe this is because I lack the capacity to believe that anything I do matters in a real sense. It’s all filling time. People tell me having written seven novels is an achievement; I think I only did it because otherwise I’d have sat on the couch and stared at the walls. It was possible, and preferable to facing the emptiness at my core.

A few days ago, I remarked to my husband that we’ve lived in our house twenty-one years. That wasn’t supposed to happen. I never imagined we’d be here so long. I thought we’d have a couple kids, find a bigger place, do the things the rest of our nominal peer group in town did. I wanted those things, more than I realized at the time. They’re out of the question now, and nothing replaces them. I blame myself; how did I let that happen? It’s impossible to pursue dreams, or even have them, when your very existence depends on forbearance.

This blog post has no tidy ending. It’s all questions, and taking one step after another. Going on and never arriving. Some people do it by choice. For me it’s an unceasing nightmare.

How Did I Come to This?

theoden-1

“Where now the horse and the rider? Where is the horn that was blowing?
Where is the helm and the hauberk, and the bright hair flowing?
Where is the hand on the harpstring, and the red fire glowing?
Where is the spring and the harvest and the tall corn growing?
They have passed like rain on the mountain, like a wind in the meadow;
The days have gone down in the West behind the hills into shadow.
Who shall gather the smoke of the dead wood burning,
Or behold the flowing years from the Sea returning?”

J.R.R. Tolkien, “Lament for the Rohirrim,” The Two Towers, Book I

The Two Towers was always my favorite book of Tolkien’s epic trilogy, and to me, the most powerful part of Peter Jackson’s film adaptation was Theoden’s (Bernard Hill) recital of the above lines as his steward arms him before the Battle of the Hornburg. (In the embedded video clip, the speech starts about a minute in.)

I’ve felt a good deal in common with Theoden of late. Trying to put myself back together after leading a largely ineffective life for so many years, I often echo his question: “How did it come to this?” Yesterday, I had some vague idea of engaging with my physical world. In the deepest parts of a depressive episode, I lose the ability to act on my environment in a meaningful way. I can see the cat hair piling up in corners and the grime in the bathroom sink, and I have some idea these are unwelcome. But the effort of doing something to change them, to clean the sink or sweep the floor, requires some investment I don’t have. I know my environment is filthy, possibly disgusting, and I know I wouldn’t want anyone to see how I live, but I don’t care. No one besides my husband is going to see it, and even if I tidied up, things would get dirty again anyway, sooner or later. Why bother to begin?

Whether this latest dip is starting to let up or whether I simply let things go too long, the mess has been getting to me more and more over the last few days. So I did tidy up a bit yesterday. I didn’t tackle the bathroom, as I meant to, but I swept and dusted the living room. It took me an hour, and by the end of it, I was exhausted and in pain. Once again, I asked myself, “How did I come to this?” I was a dance major in college. A walk of three or five miles was nothing to me. How did I allow myself to get in such terrible shape that an hour of light cleaning had me in tears?

Still shot from "The Two Towers"
Still shot from “The Two Towers”

Tolkien adamantly denied that his works were allegories for anything, but readers always find meaning that authors never intended. Part of the poignancy of that arming speech, for me, is that Theoden knows the answer to his own question. He listened to the voice of depression, in the guise of his adviser Grima Wormtongue, and it turned him old. He left the work of ruling to others. When Rohan was meant to be the Western shield against enemies bent on invading Gondor, he refused those who would keep the old treaties any aid, although it cost him his only son. He drew into a small world where his depression ruled and hope was futile. And it resulted in the last stand at the Hornburg, and arming children for war. How did you come to it, Theoden? You did it. You did it to yourself.

And so did I.

I’m not implying that I could in any way have fought off my mental illness by force of will. I spent many years saying “This too shall pass” on bad days and getting through as well as possible. When “getting through” became impossible, I got help–or as much as I could. I do have a tendency to consider low level depression normal, so it takes my being in a bad state, indeed, for me to look outside for answers. And a lot of the help I got was barely better than the alternative. I don’t hate or blame myself for my depression, most of the time.

I think I could have responded to my circumstances better, maybe. Some of what I did, I did for good reasons. I gave up “dieting” because I truly believe it’s more hurtful than helpful. I renounced excessive exercise in the name of weight loss for much the same reason. The trouble is, as I’ve mentioned elsewhere, I stopped moving at all. Like Theoden, I drew inward. My world contracted to the size of my house. It was comforting, and besides, why challenge myself to walk downtown to the post office if my husband is willing to pick up the mail, or to join him on weekly shopping trips if he’s willing to do them alone? Many “self improvement” systems, good and bad, make much of getting out of one’s comfort zone. This is hard for me, I admit. I’ve had little comfort in my life; choosing to do uncomfortable things is not high on my list of priorities.

So now my legs and back hurt if I’m on my feet for any length of time, I have asthma and no stamina, and there is no Gandalf coming to fight my demons for me and restore me to health. Medication and therapy will only do so much to banish my personal Wormtongue. The rest is on me.

Because of my background in dance, I know what to do. My back hurts because my abdominal and core muscles have atrophied for lack of use. My legs hurt for much the same reason. I’ve lost most of my flexibility, which I once prized. A combination of yoga and Pilates would go a long way to remedying these things, as would getting out of the house and simply walking around the block a few times a week. I know doing these things would help, not only with the pain and the muscle atrophy, but with my constant hunger. The problem is doing them. I’ve always found my motivation in self-hate and bullying myself into doing what I didn’t want to. These even made up a great deal of my life as a dancer: “Look how fat you are even moving as much as you do! You can’t ever stop or you’ll be disgusting! No wonder your boyfriend wants to hook up with other women!” I’ve managed to avoid going back to that mindset so far, but I’m terrified it’ll return the moment I start moving. Moving, you see, wakes up the damaged child inside me (and, by the way, I feel extremely silly using those terms), and starts it crying. All it wants is to be left alone and let to sleep and feel no pain. I’m not sure it can feel anything but pain, and that terrifies me. I don’t want to re-experience that every day of my life; it’s horrible. How does one integrate something like that? Of course, beating myself up, telling that damaged child to suck it up and stop whining because that’s getting us nowhere, doesn’t help, either.

How do I deal with this? What do I do? My former therapist used to tell me, “Baby steps,” but baby steps are abhorrent to me. I’m made of all or nothing, highs and lows. Why bother taking a step so small you can’t see you’ve gone anywhere? Why bother with a small step if even that causes inner weeping? If I sit on the couch on my ass, my back doesn’t hurt either. My current bad health distresses me, but in a distant way. On another level, it doesn’t matter to me at all. It’s as if, perhaps, the shrieks of that damaged child are so loud and demanding I have no attention for anything else. I suppose parents feel something similar when a colicky infant won’t stop screaming for days on end and all they want is for it to SHUT THE FUCK UP! I don’t know any way to silence my internal screaming other than to remain still and small. The damaged child inside me controls my whole life.

When last I saw my doctor, I got a referral to physical therapy. My first appointment is tomorrow. I’m toying with the idea of doing Pilates again. Both these things terrify me. If I can’t find some internal meaning and positive motivation, they’ll go the same way as everything in my life: I’ll do them for a while, maybe even a long while, and then give up.

How did I come to this? The real question is “How do I get out and never come back?” I haven’t got a clue.

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