Milestones, Millstones

Well, so I haven't been to sleep yet.5:30 a.m., My son is graduating today at 1 p.m. after a 15 year slog through the swamps of special ed with only shreds of his self-esteem left. My daughter and I went to my mother's this afternoon so my sister could go to the grocery store - they moved a hospital bed in last night and my mother is now practically immobile, on morphine, confused, in and out of consciousness. She is disintegrating and turning into dust in front of our eyes. Her eyes light up when my daughter comes. She tells her how much she likes her boyfriend over and over - she forgets she said it - and tonight she told her how pretty she is and that she wants her to know how much she loves her. My mother is not a sentimental woman. We all cried.

And all of that is swirling around my head, making my skull ache and my foot jiggle and my mind dream dreams of death, my mother's, my own, my husband's (but I can't go there), my kids, even my 4 dogs. The terrible uncertainly of when these utter certainties will occur ... 

For my sister, it is normal that a daughter takes care of her mother unto death. It's what is done. I could never do that, even if I had a close sunny devoted relationship with my mother - which I don't. So that makes me, what. Selfish. My sister doesn't lay this on me - I draw my own conclusions. It is true, I am a very selfish person, because I am so vulnerable to being hurt. I am "unstable" and I have to safeguard my equilibrium and shelter myself from turbulence. I hate that about myself, but there it is. I'm a de facto narcissist. If I don't wrap myself up in myself I would just bleed through my skin when you touch me, and crumble. Now I am thinking, well, I'm just going to crumble now. This is maybe what real life is all about. Crumbling, Disintegrating. Turning to dust.
 

"What Do You Do?" I Don't Anymore.

Carolyn Hax had a discussion in her online advice column about how to answer the "What do you do" question when you are a stay-at-home mom. It got lots of comments. I weighed in with mine as both a stay- at-home mom and a person with a disabling mental illness.

My comment, revised:

You guys, you think you have it bad in the conversation department as a SAHM? Try being a permanently but invisibly disabled former SAHM! I dreaded the what-do-you-do question just like you do while I was a SAHM, because it truly did immediately and obviously reduce me to the status of dryer lint in the interrogator's eyes. They'd often follow it up with "When are you going back to work?" 

** Oh!! I just had an "I shoulda said" moment! "Oh, I'm not going back to work. I'm transitioning into a SAHG position when my kids reproduce." **

But now that I'm a former SAHM, I yearn for the good ole days when I at least had that true if disreputable  description to offer. As a disabled person who really doesn't do much work-wise or interest-wise despite having plenty of time on my hands - except for running a Facebook community page and dabbling as a blogger, which don't mean shit to the professionally inclined since they're strictly volunteer - I usually just go blank. Tensely, anxiously blank.

What should I say?
 
"I'm disabled?"
"I have a terrible mental illness?" 

"I used to be a SAHM? (Or that latest brainstorm: "I'm in training for a SAHG position?"
"Who are you again?"
"I read a lot?"
"I brood?"
"They just let me out on probation for knifing someone who asked me that question?"
"WTF?" 
 "WTFlyingF?"

I like the answer someone I read about always gave to the question "What do you do?" 
"For money you mean?" she answered.

Do you catch yourself thinking .......

Do you catch yourself thinking that somebody with bipolar who is really successful at something must not REALLY be bipolar? 

It's funny, but then again, not so much.

I don't like admitting to it, but I think this sometimes. From pure envy. Goddamn. Look what she did! I always wanted to do that! My bipolar has stood in the way of my doing it. So if she did it, she couldn't REALLY be bipolar. Right? Wait a minute  .....

If I had cancer myself, I wouldn't think a person with cancer who was in remission, or managing to live well with the disease, must not REALLY have cancer!

But with bipolar - it makes me feel like shit when someone else accomplishes something. Because, deep down, I still think I'm doing this to myself. I'm making myself bipolar. It's my fault. I could "overcome" it if I tried hard enough.

Bullshit. Bullshit, brain!

The Worst Thing About a Bipolar Mother

"You are officially a bad son. I give up."

I sent this message to my 24 year old son on Facebook after trying repeatedly to get his help with something and never getting an answer.

I was joking, being offhandedly "ironic" in the same way my mother-in-law threatens to "cut you out of the will" if you cross her. My other kids would have laughed it off, but my son exploded. He messaged me back furiously when he read it the next morning -- a long series of increasingly angry outbursts. He thought I meant it, and his reaction was volcanic. It spurted out of him like blood he was coughing up.

He was the child I was closest to.

It stopped me in my tracks. It was like a blow to the head and the heart at once. The worst of it was, it sounded as final as a door slamming shut so hard it shattered.

In my usual way, I freaked out, went to my crazy place and stumbled outside, where it was 13 degrees with snow on the ground, in my slippers and flimsy sweater. Then I paced the neighborhood sobbing and talking to myself. I couldn't think even one thought straight.

I finally calmed down (after crying for two solid days) - and read his messages again. They were full of rage, but anguish too. He not only took what I said literally, but did so right off the bat. That was the part that knocked me flat: he wasn't sure I loved him.

And now it seemed that I'd missed my chance to prove it to him -- that acute love that started the moment he came out of me, 10 lbs strong and bawling, and never faltered. It sounded like he'd washed his hands of me and walked away for good.

"You can't unsay it," he wrote.

I despaired.

But he called the next night. What? We weren't estranged? I was terrified. What if I said another careless thing? Could I handle his anger? I don't do anger well. But I answered the phone.

Instead of anger I heard a lot of pain. When I asked him if he had closed the door on me, he said "no" in a small voice, "I never meant that." Then he started crying. I don't remember hearing him cry since he was a baby. He was always watchful and shy, trepidatious of new people, but an incredibly avid learner always moving on to the next level, the harder thing, in a hurry to grow up. But now he was crying the way men do, as if they can push it back down their throats if they try hard enough, but of course they can't.

"Do you know," he said, "the hardest thing about growing up with you for my mother?"

I braced myself. There must have been many.

From the beginning, he said, he knew that he couldn't show his emotions or they would hurt me. I would fall apart. I would cry. I would get angry. I would act like his feelings were all about me. And he was trapped, he said, in our house. There was nowhere to go to get away from it. So he learned to not feel. He learned how to hold it all in because if he didn't there would be chaos. To make himself safe he had to take control because I had none.

"But it wasn't your fault! I have bipolar! Anything can make me fall apart, you know that! We've talked about this! It wasn't you!" It was my turn to be anguished.

"It's not about that now, Mom; guilt's not the problem," he said, "I've moved on from that. The problem is I got so good at burying my feelings it's become a habit, and I can't break it."

My son couldn't get close to anyone, I was thinking, because I'd failed him a long, long time ago, even though I tried my best not to. But no, wait. This isn't about me now.

"I thought I'd gotten better at it though," he said, still crying, "I thought I was making progress," still in that small sad voice.

But when my offhand message came through, the dam broke. All the rage he'd suppressed for years came flooding back. And when he called today and I tearfully asked if he was walking away from me, it brought back his fear of hurting me, and all the pain I'd caused by making him -- just a child! -- both the reason and the cure for my sadness, anger, sudden joy, and terror of being abandoned.

He couldn't find intimacy because an old and useless habit held him back.

We talked about all this for a while. I tried not to crumble, or yield to the spreading shock I felt at what had happened between us - so suddenly, so sickeningly. I tried to push it all down in my mind and focus on remaining present to him in the conversation, because if I couldn't do that it would mean I was still the same woman we were talking about, the selfish one who couldn't hear her own child cry without thinking how much it hurt her to hear it.

But as I sat there, I began to notice that several years were settling into my bones. I was a much older person than three days ago. Now if I looked in the mirror, I'd see this new version of me as a mother - this ugly one, who psychologically abused her child; this self-deceiving one, who managed to overcome all her best intentions, fervid self-awareness and desperation to do no harm, and still give her son the gift that keeps on giving: mommy issues.

Soon our conversation winded down. He seemed to feel better for talking about it - for finally letting out all those feelings he’d locked away from me, and then from himself. I hoped the insight he'd had into me as mother resolved things enough that he could move past them. Young people have enough future ahead of them that they can put something in the past and it will stay there.

Once I put the phone down, I didn't feel shocked or panicked anymore. I felt sad, and I knew this sadness would be with me for a very long time. But I also felt something new. The past was different now because I saw it more clearly. But I could live with this new version of me, selfish and blind to her own manipulations as she was. I forgave her. She had bipolar disorder, but she did all she could to love her children, keep them safe, and enable them to grow into good and happy people with many joyful memories. And they had.

I still had bipolar disorder - it’s lifelong - but with treatment, distance and self-examination, I was not that needy mother anymore.

All those years that settled into me as I talked to my son were enough to teach me what we all must learn to do if we are to survive. When we hurt those we love, we accept what we've done, ask for forgiveness, make amends, and then forgive ourselves.

The past had just changed forever, and miraculously I survived.

Do You Really Want to Know Your Future?

A discussion is going on among my Facebook page's members about whether bipolar disorder is a "progressive" illness. Does it usually worsen over time despite medications, therapies, lifestyle changes, social support and all the other ways we've been told or believe will help? Is it possible to cut the number, frequency and severity of episodes? And if it is, could this eliminate or ameliorate the damage done to our brains' anatomy, neuronal function and cognitive skills?

Virtually all sources agree that UNTREATED bipolar disorder will worsen over time. And once a brain has had a manic or depressive episode, it becomes many times more likely to have another one. Left untreated, this process ("kindling") accelerates: more and more episodes, worse in severity, oftentimes rapid cycling and mixed states.The brain structure and neuronal function change.

But what about TREATED bipolar disorder? The impression most popular sources give is that if intercepted early and controlled with medication, bipolar does not have to be progressive or degenerative. Things will start looking up, they say.

But, as you know if you have this disorder, even started early the treatment is hit and miss. It works sometimes, others not, and there's a seemingly lifelong pursuit of the right medication cocktail. Does that kind of treatment -- the real world kind, what people actually get -- interrupt or stop the natural progression of the disease?

The literature is not clear. Some say the process can be halted; treatment will give us an outcome close to "normal." Personally, I have my doubts. It's an established fact that people with mental illnesses die an average of 25 years earlier than people without one. More is going on than just lack of treatment or lack of supports (or lack of housing, money and jobs). The 25 year life expectancy gap gets more disturbing the more you look into it, because it turns out that it is true even after controlling for suicide, co-occurring disorders and lack of health care (and those other "lacks" I mentioned). Mental illness itself seems to make you die earlier. You are more likely to die of cardiovascular disease or diabetes if you also have bipolar.Why remains a mystery.

People on my page, called Bipolar Over 30, talk a lot about how our bipolar disorder seems to be getting worse as we get older. Treated early and steadily or not, we still tend to have more and more episodes over time, and/or they are more severe and disabling, and/or we have permanent cognitive deficits and collateral problems that make life very difficult. We find ourselves more and more disabled by it even if we had and continue to get the best treatment. BUT NOT ALL OF US DO. There is wide variation among individuals.

What do you think about this? If you are middle aged, has this happened to you? Do you see a lighter or a darker future ahead for you?

I tend to believe the research that says bipolar worsens over time and so does our ability to function day to day, for "anecdotal" reasons: I see it in myself and others I've talked to. I think popular sources that say otherwise are whitewashing things, being "positive" in hopes of motivating people -- perhaps mercifully but not honestly, and perhaps not very helpfully in the long run.

But how should you handle this information if it's true? Does it rob you of hope and motivation to continue? What does it mean for your outlook, expectations, planning, -- and for your family or caretakers? Does it profit anyone to receive this information, earlier or later in their lives? Would you want to know in advance if your bipolar disorder will probably be a degenerative brain disease just like M.S. or Parkinson's, albeit with the same uncertainty about any individual's outcome? 

Personally, I want to know. But, knowing, I will live out the rest of my time on earth as if I didn't.

Stress Muscles

I'm beginning to see that it's not really such a good idea to remove practically all consistent stressors from your life when you're bipolar (if you are incredibly fortunate enough to do that). Your brainbody (just invented that word) recalibrates to the new baseline level of stress and freaks out when you exceed it, just like it does when your baseline is high and you exceed that. In other words, it takes much less to overwhelm you.

I'm thinking what I need is to exercise my stress muscles. Raise my baseline level of stress so it isn't so low I'm barely functional. I lowered my baseline drastically two years ago when I had a severe episode and landed in the hospital. Afterward, I couldn't get through half a day alone just doing nothing. Yes, being alone in my house doing nothing was too stressful for me. Now, I can handle that, and some more stressful things as well, but not nearly as much as before I had the episode. Many of the stressors I eliminated when I was sick I still avoid. I'm afraid I'll freak out again and end up back in the hospital (or sitting alone in my house too stressed to get dressed).

But I need to start exercising my stress muscles again. Take on some more stressors, a little at a time. Stop hiding out in the house. Try a new  experience: ride the subway to a new station, drive 95 (with a companion just in case), take an adult education class again. Stop handing off stressful tasks to others or leaving them undone. Don't depend on my family for so many things. I'll just tone my stress muscles, but not overdo it and tear one so I'm back to (safe but fragile) square one.

I'm thinking I'll have to tackle these one at a time. One at a time....Then maybe one more. ... Then see if another...And so on. 

Reps, it's all about reps.

I Sleep Funny. Get Over It.

I have bipolar disorder. More and more researchers are coming to understand that bipolar disorder is a circadian rhythm disorder. Anyone who is or knows or has heard about a person with bipolar disorder probably has noticed they sleep funny. Too long, too little. Either all day or all night. Can't get to sleep, can't wake up. Nightmares, sleep paralysis, sleep hangovers.....

So for my whole life since I started elementary school, I have not been able to go to sleep until the wee hours: one, two, three a.m. I'd just lay down and stare at the ceiling and usually get scared, so my Dad (who also was a sleep freak) would let me get up and watch TV with him till it went off the air (yeah, back before cable).

I had to make sure I got to school on time myself as I got older (because my mother was too afraid of me to stay on wake up duty -- I was known to throw a punch, threaten murder -- it was not pleasant), so I forced myself to get out of bed somehow -- there were tricks I can't remember  now-- having showered and shampooed the previous night and sometimes dressed for school too. I usually squeezed in the door with a minute or two to spare .... or not. I found a homeroom teacher who often couldn't get there on time either, so we bonded. We lied for each other.

Same deal in college, only worse because there was no set schedule. I flunked Geology AND BOWLING my first semester because they both took place before noon. Had they been later, I would only have flunked bowling.

I won't bore you...When I got a job, I arranged things so that I could work whenever I wanted to. (I had a long deadline but freedom to organize the work however I wanted and work from home almost all the time.) My hours slid later and later and my nervousness and embarrassment got greater and greater because I have "delayed phase sleep disorder" -- the fancy name for falling asleep later and later and waking up up later and later, until eventually you come full circle. My job was forgiving. So forgiving, they sent me copy to index while I was in the psychiatric ward. (Remember the thing at the back of the book that told you where things were? That was an index.)  Forgiving or just very dependent on my skill set; as my mother used to say -- to my befuddlement: "same difference."


A big hurdle for my husband and I in deciding whether to have kids was how to come up with work-arounds for my utter and incurable inability to sleep less than 10 hours at a time -- and to go to sleep before midnight. Which meant no mommy getting up to feed, clothe, dress and shove the kids out the door. Praise Jesus and my mate selection for this fact: My husband is a lark. He can not only get up early but survive on drastically less sleep than me for long periods of time, maybe forever. He did all the baby-tending while I was dead to the world. To my abiding shame, I couldn't even make teacher conferences, PTA projects or field days if the sun was still coming from the east.

I mean, I could have said "Yes, well, Mrs. Jones," (next door neighbor with child in one of my children's classes at elementary school) "I have delayed phase sleep disorder" but it would perhaps have made me a bit less welcome at block parties or mommy get-togethers, because it sounds so strange, vaguely scary, and just, well, suspect. I could also have said "I'm bipolar" but then suspicion would have turned to outright fear and thoughts of mass murder and god knows what. "I thought so! She was always strange! I wonder if she even supervises her kids at homel? My Jenny won't be spending time at her house anymore!" And Jenny was my daughter's best friend.

More often than not people who discovered my secret were kind of angry about it, like I was thumbing my nose at them, or claiming an unearned special privilege or just lazy and sticking to it. Everybody would like to sleep late, right? But they don't in order to be normal. I didn't know what to say.

I still don't! I still feel embarrassed if not ashamed when people find out and ask me about it. Some guy is doing drywall repair on our kitchen, and today he came at 9 a.m. and my husband was here to greet him. My husband stayed, working from home (yeah: if he couldn't do that, we'd be fucked) until 3 pm. when I rolled out of bed and came downstairs to the kitchen. I made coffee and pancakes and sat down to read the paper. My husband went to the office. The drywall guy kept giving me sideways glances, then finally sidled up to the subject of my "schedule." Ours sounded as "crazy" as he and his wife's, he said, carefully. Then: "Do you work at night?" "No" I said, feeling that nervousness climbing up my throat. "I'm just on a different schedule. I do work on the Internet overnight," I  lamely lied and he knew something was fishy. Now, this lie is somewhat hilarious, as the only "work" I do on the Internet is this blog, and a Facebook page for people with bipolar disorder. Plus lots of shopping, reading news, scrolling through tumblr blogs for cool pictures and photos. No paid labor of any kind. But what else could I say? "I have delayed phase sleep disorder?" "I have a circadian rhythm disorder?" I'm bipolar?" "I'm lazy and think I'm too good to sleep at night and be up in the day like you little people?" "It's none of your business?" "I prefer not to talk about it?" I've tried, let's see, 3 of those. They didn't help. The other 3 probably wouldn't either, I'd venture.

It's a medical problem, sure. (I discovered recently I have sleep apnea on top of this sleep disorder. But using the breathing machine seems to have zero impact on this delayed phase thing.) But nobody else sees it that way, at least not right off the bat, before being enlightened at length with lots of scientific data and diagnostic manuals or better yet, told that Celebrity X has it too! But you know I just really don't feel like educating them, arguing with them, justifying myself (in my own house too! to the drywall guy!) and well, screw celebrities. I'm not 5 anymore getting teased by my half brother and half sister about sleeping funny. But it sure feels like it. Like there's something wrong with me and it's obvious, and it's unacceptable, and it's my fault, and damn it, I have to answer for it.

Maybe I'll go with "I have a sleep disorder" next time. I hope they don't want to get into the nitty-gritty, because chances are it isn't the same one their wife's friend had. The nitty-gritty will involve bipolar disorder which is a mental illness which is always paired with senseless violence which means I'll be an outcast. They'll fear me. Or else they'll just be faintly puzzled, and wander off thinking, well, that lazy woman certainly went to great lengths to excuse her laziness. If she could work that hard on doing that, why didn't she just set her sights on getting up in the morning like everyone else? I mean, explaining like that is exhausting. Not enough to send me to bed early, but still: tiring as hell.

Lady Macbeth In a Dorm Room

“Macbeth: How does your patient, doctor?

Doctor: Not so sick, my lord, as she is troubled with thick-coming fancies that keep her from rest.

Macbeth: Cure her of that! Canst thou not minister to a mind diseased, pluck from the memory a rooted sorrow, raze out the written troubles of the brain, and with some sweet oblivious antidote cleanse the stuffed bosom of that perilous stuff which weighs upon her heart?

Doctor: Therein the patient must minister to himself.”

~ William Shakespeare, Macbeth

I memorized this exchange between Macbeth and the doctor who is supposed to cure his wife, in college during the long months I spent locked in my dorm room, reading for my English classes. I only left to go to class (sometimes) and eat somewhere away from the other girls. (I never learned a single one's name.) My head was heavy and I was stunned. I'd fallen in love with my roommate the year before, and she'd dumped me. I was an experiment; when it was over, she returned to her boyfriend. I cried a lot. In fact I had tears on my face, new or dried, every day and night. I cried myself to sleep and dreamed about crying. I woke up crying. I slept all day and worked all night, crying, receding from the world. I was losing my bearings. 

One weekend, I determined to swallow a whole bottle of aspirin. I went to the bathroom after midnight and took about five. Waited, took another five. Waited a longer time, because they were sickening, and took another five. I had to stop there; more would not go down. Then I returned to my room, and nothing happened. I'd envisioned going to sleep and never waking up. But I did, the next day, slightly nauseous, still broken-hearted and teetering on the edge.

And I knew it. But my "counselor" didn't seem to; I trooped over to his office at "Psych Services" every week, where he asked about my thoughts and my grades. I never mentioned the aspirin or the constant tears. Then he sent me back to my dorm. There, I said less and less, but wrote a lot: either hysterical  gibberish and screeds to my ex-roommate, or insightful term papers turned in on time. Somehow I managed to keep my academic life viable, but everything else was sinking. I knew it was Depression; I'd been hospitalized for it in sixth grade, and I'd never forget what it felt like. Yet I couldn't do anything about it. I was paralyzed. That's the first rule of Depression: You cannot act to help yourself. And you cannot ask for help. Depression forbids it. I saw my counselor, I read, I wrote. I kept up the pretense of living.

But I felt like I needed something to get me through: words that spoke to me directly, but from a distance. Comforting words, but also sharp to cut to the heart of the matter like a honed scalpel. They would remind me that somebody else had felt like me, and someone else had understood. They'd throw me a rope in my sea of loneliness and anger, grief and fear.

I think I just went looking for them through the plays and sonnets in my green Norton Anthology of English Literature -- 1000-plus pages in tiny type on crinkle-thin paper. One day I came across this exchange between Macbeth and his wife's doctor, who was called in when Lady Macbeth'guilt had unhinged her. When I lit on it, my heart seized. It leapt off the page and punched me in the gut. Here was a rendering of exactly what was happening to me, 500 years later, in my cinder block room with walls so narrow a bed on one side and a desk on the other left 4 ft in between. It was a tomb.

The words were beautiful and vehement, sorrowful and angry. They were exquisite. So I took to repeating them to myself when I went to sleep, and I wrapped them around me when I returned "home" from whatever foray I had made into the "outside world." They gave me silent comfort, like running your tongue over your teeth. Pretty soon I knew them by heart. I kept them there, urging it to beat. 

Macbeth is enraged at the inadequacy of medicine to heal his wife's disordered mind. "Cure her of that!" he yells with all the urgency and outrage families feel when their loved one suffers -- and no one has an answer. He demands some "sweet oblivious antidote" that even he seems to know doesn't exist. Lady Macbeth, is plagued by "perilous stuff that weighs upon the heart" he laments, enraged -- and so was I. So are a lot of people, then and now. There are some drugs for it, but not the right ones; some other treatments that fumble and guess but fall short also. "Therein, the patient must minister to himself," the doctor finally says, throwing in the towel. As if we could. As if we weren't sick, seized by awful images and wanting to die. As if we weren't bound by Depression's first rule: You cannot help yourself. You cannot ask for help.

Not much has changed in 500 years. The outside world has changed tremendously, but the inside worlds of  people suffering "thick coming fancies that keep them from rest" are just as they always were. That could be cause for despair, but for me the written evidence of how nothing's changed was comforting. Words of course are not enough to "pluck from the memory a rooted sorrow" -- even furious and beautiful ones. The roots of such sorrows run too deep. But the words did describe me! Somehow they knew me and the "written troubles of my brain," and that was enough. They sustained me, kept me company, and in a strange way gave me hope. They got me through till I could finally leave my room.

It Only Takes One Remark

It's probably the thing I hate and fear most about having bipolar disorder combined with social anxiety and borderline personality. It upends my life. It pulls the rug out from under me. It hurtles me from place to place, from time to time, from person to person, from one trauma to another without warning. It makes me liable to lash out, to feel mortally wounded or ashamed, to confront, blame or otherwise alienate my loved ones and even myself.

And it lurks behind any corner.

On Sunday, I went to a potluck at the tiny church I'd started going to exactly one week before. My husband and daughter decided to come along. I avoid most social situations, and this was exactly the kind I fear the most: a small group of people who all know each other but not me. It sends my self-consciousness and fear of appearing odd or sick or pitiable skyrocketing. I don't know why I went really. I guess I just felt comfortable enough at the first service I attended to take the chance.

It was going pretty well. All three of us "fit in." I was pleased. I was relieved. I felt like part of the group.

My daughter sat next to me at a big table where everybody was eating. We were talking about their children whom they'd home-schooled together, and about plays they'd been to lately, the kind of ordinary interactions which weren't exactly ordinary for me, but I was handling it, even feeling pretty good.

Then my daughter made the remark.

She asked me (apart from the others, thank God) if I was going to have Thanksgiving at our house again this year. I said maybe, I hadn't thought about it, depended on what others wanted to do, etc.. But she had to pin me down. She insisted.

Considering it more closely, I said "Well, it stressed me out the last time but I got through it."

"No you didn't!" she said, eyebrows raised.

Flustered, I ventured "Oh, it wasn't that bad, was it? No one noticed. I pulled it off."

"You were flipping out!" she said. "It was obvious! You were a mess!"

No I hadn't! Had I? I cooked, I decorated a little, I put the food out, found seats for everyone, kept everyone's glass full. I didn't recall exchanging anything but pleasantries with anyone. People stayed around afterward, seemed comfortable enough. But none of that mattered as soon as she said it.

Because suddenly, I zoomed out. I was looking down at this dinner but also at last Thanksgiving, at other dinners, other occasions; other times I'd  had to be with others who weren't my immediate family. I looked down at all the times I had pretended I was not as stressed as I was, not as emotionally vulnerable as I was, not as self-conscious and judgmental of myself as I utterly was. And I looked down too at the times when I was not nervous at all, not stressed at all, times I felt totally "normal."

My brain started churning out poison: Everybody at that potluck dinner, just like last Thanksgiving's dinner and every other dinner or event I'd ever been present at,  probably saw me as strange and volatile, even if I felt perfectly fine at the time. They could see through me -- and into me, where the crazy parts were. They felt sorry for me, but didn't want to embarrass me by showing it. Maybe they were afraid of me. In fact, every stranger I'd ever come into contact with probably knew instantly that I was "different."

So every social "success" I thought I had -- like that Thanksgiving dinner I thought I'd pulled off -- was really a failure, a sham. People had just pretended they didn't notice me "flipping out." There was a giant secret all right, but I was not the one keeping it from them. They were keeping a secret from me: that they all knew I was "crazy."


I felt sick to my stomach, "punched in the gut" where all that poison was churning. I tried not to cry. I looked at my daughter.

"Really? Wow. I didn't know. That's embarrassing. Now I feel like shit."

Her face turned red. I said so.

"I'm embarrassed," she admitted. She knew she had hurt me. She didn't mean to.

Actually, I was worried I'd gone beyond being hurt to maybe losing control. I was afraid I just might "flip out" again, right there at the potluck dinner with a bunch of strangers whom I really wanted to find fellowship with. Self- hatred washed over me again like a stain, soiling every memory, every lovely moment, every triumph, every relationship I'd ever had. It got out of hand fast and bolted like a wild horse. It always did.

I was angry and disgusted. Angry at her for carelessly "hurting my feelings" when she knew it could derail me, and disgusted at myself for having such hair-trigger emotions. By now, at my age, after going through this since childhood, shouldn't I have "resolved" some of this mess? Shouldn't all the therapy and meds, and the love of my husband and family, have shown me at least a few ways of interrupting this process of self-recrimination, so that sometimes it wouldn't end in things like self-inflicted 3rd degree burns? For God's sake, STILL?

By the time we got home, my mind was rehashing my last hospitalization, a year and a half ago. It only lasted two weeks, but it felt like my whole life. It had all the elements of my worst nightmare, traumatic as traumatic gets, all my flashbacks brought to life.


So who did I lash out at, sitting at home so many months later, with all of it behind me? My husband! He let them admit me! He left me there when I begged him to get me out! He didn't demand they transfer me to another hospital with a doctor I knew and trusted. He even let them set the commitment process in motion, knowing that would be the final nail in the coffin of my self-respect, something I had never let happen in 40 years.


But we'd been over and over this. I'd forgiven him. He'd explained how stressed he was, that he didn't know what to do so he did what they told him to. I understood how sad he was, how powerless he felt. And to reassure me, we'd drawn up a psychiatric advance directive, so that I'd get the right treatment next time. (Please, don't let there be a next time.) Yet here we were again. Here I was opening old wounds that had healed over, reliving my worst memories and forcing my husband to relive them too.

One small innocent remark about a long forgotten dinner had that much power over me.

My mind is deeply grooved with painful memories, awful depressions, intense self-consciousness, loneliness, self-hatred, anger and fear. The grooves for pain are deeper than those for pleasure and love; I don't know why. My mind can't seem to get past its wounds. It can't heal. However much love and happiness grows over them, the old hurts will still open at a touch. My mind can't talk to itself and pull itself back from the brink. Once it's triggered, my mind can run away with me as fast as a bullet and ruin my life.

So that's what I hate and fear most about bipolar disorder combined with social anxiety and borderline personality disorder. At any moment, in any place, for any reason and sometimes for no reason, some unexpected tiny blip on the radar could be the missile that explodes in my face and sends me to hell. I know hell: I'd rather be dead than there.

Suicidal because my daughter said I'd seemed stressed a year ago? Welcome to my world.

Happy Halloween From "The Dangerous Mentally Ill"!

Well, hello there! I am a member of that infamous tribe, "the dangerous mentally ill." The one politicians have been beating the drums about so often and so menacingly lately, leading up to the election. My heart skips a beat too when it booms out of my television. I'm a little scared, just like you. They sound pretty fucking alarming, "the dangerous mentally ill." 

Apparently they are buying guns in bulk, which they will use to kill senselessly, but that other politician has done nothing to stop them! He wouldn't even vote for criminal background checks to disqualify "the dangerous mentally ill" (who aren't technically criminals but hey, might as well be, right?) from owning guns! (And yes, there are so many guns in this country, it'd be easy for those mentally ill to get their dangerous little hands on them anyway. But, don't interrupt! We're trying to terrify the electorate here.) 

The phrase doesn't refer to a subgroup of "the mentally ill" anymore -- to that small group who are "dangerous" despite, um, never having posed a danger to anyone. (Let's see...They're dangerous because in hindsight, some killer or other was probably mentally ill, and someone should have noticed he was dangerous before he ever became dangerous, so that he wouldn't become dangerous....Wait, is that logical? .... Oh, logic doesn't matter? All rightey then.) Now it means everybody: All "the mentally ill" are "the dangerous mentally ill." They've all morphed into monsters overnight! That's how sneaky and insidious they are! Round them up: anyone you see going to a psychiatrist's office, or filling a prescription for one of those drugs they take, or talking to himself in public (but be sure he's not wearing earphones first). They're all coming to get us. We must be vigilant! 

But [SPOILER ALERT] guess what? They're just bogeymen. And like all good bogeymen, they're trotted out to scare and distract people -- so that politicians can do what they've always done: get themselves elected no matter what, by demonizing no matter who, so they can do nothing whatsoever about the things that are truly dangerous: unemployment, poverty, hunger, the disappearance of the middle class, climate disaster, lack of health care, women losing their rights to their own bodies...and, well, we could go on for quite a while. But it's easier to throw a sheet over thousands of human beings and yell BOO!! They're "the dangerous mentally ill!" Scared yet?

Bipolar Parents

Don't forget that all other parents fail their children in some ways, many without even considering it or feeling guilty for it. We will fail ours in some ways too. But having this disorder can make us better parents, not worse.

We know we'll make mistakes -- we have a mental illness! That's always on our minds (pun intended). In fact, we're so aware of it and so afraid of doing harm that we do everything in our power to avoid making mistakes, to minimize them, correct them, compensate for them, and give our children a normal life -- which means an imperfect one, touched by sorrow and loss and confusion like everyone else's life.

But we love hard. We love abundantly. We are devoted, knowing how lucky we are to have those children, given our brokenness. Like a knotty bent-limbed tree, we grow around the breaks and reach high. Our brokenness is only more obvious than other people's, not more dangerous. 

If our children grow into adults with bipolar disorder, as some will, the same will be true of them. They will know how important simple, vigilant love is, because it protected them and allowed them to grow into the complicated people they are. They will know that all parents are flawed but the good ones just love hard. They'll do their best. Just like us.

Sometimes I forget that joy is not mania, and sadness is not necessarily depression. In other words, sometimes I forget that I am a human being.

Spiral Out, Keep Going

                                                                               

 

(image from wasteofsociety tumblr blog)

I loved this image on sight.

Bipolar disorder is a circular disease. In one of the earliest clinical descriptions of it, French doctor Jean Pierre Falret published an article in 1851 on a condition he called "la folie circulaire" -- circular insanity.

The description rings true: endless cycles -- regular or irregular -- and the helpless sensation of "going in circles," carried along on a senseless merry-go-round. But what speaks to me about the image of a nautilus shell's spiral whorls is that it suggests the possibility of a direction for all this centrifugal motion. It recasts the circle as a spiral.

The small letters (I had to look twice to even notice them) snaking around the chambered shell spell out the words "spiral out, keep going." They urge me to just keep walking, hope in hand. I can't see it yet from inside the tight coil, but the circles get wider and wider, and they lead to a better place. One day I'll emerge from all the circling and cycling, the scary and confusing whirl of bipolar disorder, and find I've been climbing a spiral staircase, not spinning meaninglessly. I've gotten somewhere. There's air to breathe.

I'm in a spiral rather than a circle. Like the whorls of a nautilus shell, I'll trace an expanding pattern toward freedom.

I like it so much I've taken to repeating it to myself  -- usually when anxiety starts whispering in my ear. I resist it by reminding myself to "spiral out, keep going." When I'm losing hope, it's a gentle reminder not to. The rhythm of the words, repeated over and over, is like a work song or a martial cadence, a line of poetry or a prayer.

"Spiral out, keep going," and the image within the words, serves me as mantra, metaphor and incantation: a bipolar prayer.

Strange Things Psychiatrists Say

Question: What is the strangest thing a psychiatrist or therapist ever said or did to you?

                                                                            

I posed this question on a Facebook page I run for people with bipolar disorder.

These are some of the responses.

(If you’d like to add your story in the comments, please do!)

ONE

Psychiatrist: (he did this to everyone) would give a series of three words to repeat back to him, then discuss other things for 5 minutes before asking us to repeat the words back again. The three words were ALWAYS apple, chair, umbrella. I confirmed this with other patients in the hospital (the only place I really saw other patients) and as I recall we were developing an Apple, Chair Umbrella poem/performance art.

Therapist: I saw her for group and individual sessions for a while. After a solo session about my issues with my looks due to the fact that my mother was an exceptional beauty and she often corrected my looks, posture, carriage, etc., at the next group session, she, out of the blue, looked at me and said, "I just like looking at you, Amy. Is that okay?" And she invited others in the group to look at me and comment -- the group included men with sexual addiction! I still wonder what theory that rose from.

    Comment: that's just frickin' creepy.

    Response to comment: it was not long thereafter I declared myself cured. Which was not quite the right solution. But I left that particular practice and went to the community mental health clinic, which was actually better.

  
TWO

My first appointment with an actual psychiatrist went horribly. Even though I was self-harming and numbing myself with pills and was completely out of control he told me that I "just had a little depression" (whatever the hell that means) and to go to this particular pharmacy that I don't frequent (because it's so far from my home) and pick up this med I hadn't even heard of. Didn't discuss whether I wanted to be on it or not, just called the pharmacy and told the guy i'd be in.

I never went to pick it up (obviously) and a couple weeks later I was hospitalized where I was properly diagnosed Bipolar and put on proper meds.

I still want to smack that guy in the head.

     Comment: do you remember what the drug was? Maybe we all missed out on a miracle cure. :)


THREE

This one is embarrassing: told me to buy some sex toys. She also asked me where I got my lipstick, hair clips and shoes. And talked at great length about what was so amazing about Interview With the Vampire and Dexter. A real piece of work, that one.

FOUR

My eccentric one-of-a-kind psychiatrist of 28 years once gave me a "voodoo doll" she had sewn herself of black and red fabric with little black button eyes and a tuft of stiff hair sticking straight out. It came with a long hatpin to stick in the doll when you cast your curse. She made a lot of these and sold them at craft shows, so it wasn't THAT weird. But I later used the hatpin to self-harm, which understandably pissed her off considerably. :):


FIVE

Asked me if I was sure I was bipolar.


SIX

I have another one: A psychologist I saw about 5 times after I had to leave college (because of suicide attempt) stood up to hug me at my last session (weird enough), then kissed me (with tongue), then while still "hugging" me asked me to lay down on a bed he had in the office (!). I declined in terror. He said he just wanted to "comfort" me because I looked so sad. I didn't know if I'd get out of there without being raped. I managed to hide my terror and edge toward the door. Got away. I was 18, he was about 50-60.

    Comment: Geez. I'm traumatized for you just reading that. What goes through their heads? I'm glad you got away.

    Reply to comment: What went through his head was what went through his other head. LOL (Pardon me, I'm crude.) There was a showdown afterwards when I told my parents and the teacher who'd referred me and he denied everything. Then he conceded he'd given me a "grandfatherly" kiss. (Because doesn't your grandfather stick his tongue in your mouth?) Then he said I'd better stop spreading this story because it was hurting his professional reputation. Good. What a pervert.

SEVEN

Told me to change jobs and gave me employment advice. Moron.

EIGHT

Fell asleep.

NINE

Told me I needed to stay medicated like a zombie because I was a threat to society....I have never harmed myself nor anyone else, I have never been hospitalized, I am manic and become invincible in a very happy way, if anything more sexual, but I was a threat? Btw this was 20 yrs. ago: no kids at the time and fresh out of high school,  graduated! Dude was an asshole!

TEN

That he wasn't "impressed" with my story, this was at our first meeting.