We Die Too

 

Let's put aside all arguments about whether or not there is a clear statistical relationship between mental illness and violence for a moment. Doesn't it bother anybody besides me that no one gives a damn about the mental health care "system" until they need someone to blame for a tragedy? Then we all start talking about how to strengthen the rules on involuntary detention and commitment, how to identify "dangerous" mentally ill people and do something or other with them, how to increase "access" to mental health treatment (which often does not exist) and somehow restrict access to guns by scary and dangerous mentally ill folks whose futures we have foreseen to feature acts of violence against others and/or, secondarily, themselves.

We die too.

I live in the state of Virginia. After the Virginia Tech massacre in 2007, in which 32 people died and 17 were injured, Virginia pumped $38 million into the mental health care system, a relatively large boost but not massive. Seven years later that's all drained away and things have returned to how they were before that tragedy. Until now. New bills will ramp the funding back up and try to "fix" the broken mental health system. Why? Because two months ago a prominent state senator, Creigh Deeds, was stabbed by his son, who then killed himself.

We die too.

This incident is tragic. Mr. Deeds is a fine man, who has now lost a son as well as suffered an injury. Today he acknowledged publicly that "the system failed" his son. He is right. And in response, bills to change and fund the mental health care system are on the table again. A large portion of them address the specific procedures, programs and legal restrictions that resulted in Mr. Deeds' son being released after two hours because he was not deemed a danger to himself. Those aspects of the mental health care system are some of many that are "broken." But there are others.

And we die too because of them.

Those failings and inadequacies of the system kill many more people than the ones in high profile tragedies. Mentally ill people do kill, as do people without mental illnesses. But mentally ill people themselves also die in droves -- by suicide, by illness-related disease, because of homelessness and victimization resulting from their illnesses, because of family dysfunction their illnesses contribute to -- and many of those lethal conditions are directly caused by a lack of basic mental health care.

Those are tragedies too.

Mentally ill people are dying by the thousands everyday but no one pays attention because they have not injured or hurt anyone else. Suicide killed 35,000 people in 2007. We are dying too, on a very large scale.

And that is tragic too.

Yes, we should increase funding for the mental health system. We should make access simple and immediate, we should give special attention to anyone showing signs of violence -- we should do all of the things Virginia is talking about doing, but we should do it not just in the name of the victims of high-profile shootings and assaults. We should do it in the name of the mentally ill who suffer greatly from their illnesses every day and seldom become violent. Yet violence is done to them every day by their illnesses, silently and invisibly. Their minds, their hearts and often their lives fall victim to painful and incurable illness.

We die too. And those deaths are tragedies. They are tragedies too.

Sign My Petition to Stop the Horrific Abuse of Prisoners in SC

http://petitions.moveon.org/sign/stop-the-abuse-of-mentally.fb43?source=c.fb&r_by=2290506

Here's the story:

http://thinkprogress.org/justice/2014/01/08/3137621/incarcerated-death-mentally-abused-neglected-humiliated-south-carolinas-prisons/

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.

Speaking Up

We should all speak up about stigma as far as we're able and whenever we find it. It's a matter of self-respect as well as social change.

Some people challenge the idea that there even IS stigma surrounding mental illness; I can only assume those people have no mental illness, have never known anyone with mental illness, or will only open one eye and "look on the bright side."

Stigma is on the dark side. With stigma, the old slogan is so true: "If you are not part of the solution, you are part of the problem."

End of speech.

"May Be the Last Time, Children, I Don't Know"

I spent this whole day in the hospital with my mother, who we thought might have had a stroke. She didn't; she has instead something minor called Bell's Palsy. My daughter took her to her more-important-than-the-Second-Coming hair salon appt. this morning, and because her mouth drooped on one side and "felt funny" I made my daughter call an ambulance. (Being loaded into an ambulance in the parking lot of the Hair Cuttery pissed her off more than any stroke ever could.)

So: all day in the ER, the first doctor. saying she would be admitted for evaluation, the second (the neurologist whom I swear modeled herself on Lillith, Frazier's wife, down to the black hair and scowl) saying it was Bell's Palsy, an inflammation of a facial nerve that would clear up fairly soon, then spitting out a string of increasingly detailed and reality-divorced instructions and contingencies including patching her eye if her eyelid wouldn't close. (Excuse me, doctor, but the affected eye, is the only one of just the two she has that actually sees). At the end of her spiel I asked her if what she had just told me would be given to me in written form because I would never recall it, and she looked at me as if a particle of dirt had just spoken, and enigmatically replied "I should hope so."

So then after shouting myself hoarse repeating the medical questions and explanations put to her, and answering the same damn questions and pointless ramblings and random observations (reiterated practically rhythmically) from HER, we finally took my mostly deaf, more than half blind mother home, got her Rx, left her in front of the TV and (in my case) sprinted to the car muttering loudly to myself, expletives predominating. We drove home, my home.

(No, she doesn't live alone. My sister, no one understands how, lives with her but is away for a few days.)

You just don't know, gentle reader. You just don't know. It's a special hell reserved for those of us with "difficult" mothers, the kind that are "funny," "charming," "with-it" "spunky" and what-have-you when considered in a stranger's gaze for less than 5 minutes -- but morph into something altogether different, more intolerable and sanity-challenging when allowed to spend more than say 30 minutes alone with one of her own children.

Yeah, we're all probably going to hell for feeling it, thinking it, showing it and saying it -- especially saying it on a global social media platform! -- but the truth will out. And damn it, she'll probably join us down there.
If you've got one of these mothers, god bless you. I hope you will find a quiet unpopulated wooded area to scream your bloody lungs out unperturbed now and then.

When I did get home, my CD of the Blind Boys of Alabama had come in the mail. The last song had me yelling and crying along. Any day could be the last time, and that's both bitter and sweet.

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.