Defining Normal

It happens sometimes that people get sidetracked into the swamp of defining what 'sanity' is, what ‘normal’ is. Usually they just leave the question hanging. If we are going to accurately monitor ourselves, however, we need a benchmark for sanity. We need to have some way to know when we have gone off the rails, when it is time to curb our behavior. We can’t decide what to do about psychosis, if we don’t know we are psychotic! The real question is, what does sanity feel like to YOU?

A lot depends on the age at which we became mentally ill. Obviously, if disease struck you at age 26, you have some kind of memory of what ‘sanity’ felt like, however you may define sanity. The world felt different. Perceptions were different. You can remember. You can compare. But what about those of us who started early? Some of us have never experienced adult ‘sanity’. We were kids, and then we were insane. No ‘before’ picture to measure by. Some of us were even insane as kids. What do you do then? How can you tell that things have gone further south than usual?

Well, if you’re lucky, at some point your medications will stabilize you – even if only for a little while – and that can become your measure of what adult normal feels like. I had to wait until I was 34, myself. But once I knew, I had a reliable way of telling when I had got too far from the beaten path. We have to pay attention to our bodies as well as our minds. There are certain sensations I associate with mental illness – a sort of tight, closed-in feeling, as if only my mind exists and my body is locked in a box, and I literally CANNOT notice what is around me, or change the topic my brain is stuck on, no matter how hard I try. I feel overwhelmed, over-stimulated, a little panicked, a little trapped. I cannot listen – the words inside me must be spewed out. I cannot calm down – there is a firestorm in my head that often turns into a very real physical headache. I certainly am not breathing very deeply. The irritation and tightness that accompany this are clues that I am losing it, and should go lie down.

If you observe yourself for a while, you will learn your own cues.

If your meds have never graced you with adult ‘normal’, it is trickier. You have to judge by lesser or greater, with no absolute benchmark. And you have to depend a lot on the reactions of other people. If everybody around you is concerned or hostile or telling you to stop or shut up, chances are real good you’ve crossed the line. You might want to set up a verbal or visual signal with someone you trust, a simple phrase like, “Honey, you don’t seem like your usual self today.” Something simple and inoffensive that will not set you off all by itself. And you will have to surround yourself with people that you trust.

This can be tricky, too. It is to easy for those who are not sick to label anything they do not like or understand as ‘insanity.’  Holding dissenting opinions is not insanity. Having an unusual idea is not insanity. Insanity is operating from a non-standard reality, and not knowing you are doing so. That doesn’t happen every day, for most of us. We need intimates who allow us to be our disparate selves, and this can be a challenge. New Year's Resolution: surround yourself with people you can trust.

It is difficult to be mentally ill partly because of the way it messes with our fundamental belief that we are right. A person with a mental disorder has to be ready to concede, at any given moment, that they may be wrong about virtually anything, even the smells wafting into their nostrils! The least we can do for ourselves is make sure those around us can be trusted to have a sense of what is our illness, and what is simple idiosyncrasy on our part.

There are individuals like that out there. Go and find them, and happy hunting.

Deborah Fruchey

Deborah's new book, Is There Room For Me, Too? 12 Steps & 12 Strategies for Coping with Mental Illness, is now available on Amazon.com, Kindle Editions, and Apple's iBookstore. See the above link for an introductory video.

Top Ten Tips for Surviving the Hoidays

Everywhere we go at this time of year, people are insisting that we be happy, have good cheer, and enjoy the holidays. For the mentally ill, this can be a problem. Some of us become more depressed than usual. Some of us come apart due to the stress. Some of us, living poverty-stricken or isolated lives, will feel more alone and broke than ever. It’s not easy to give neat presents on the fixed income of Disability, or the pittance of SSI.

Holiday blues can happen to anybody, but for the mentally ill, who live so close to their emotions and the negative critics inside their heads, it can be enough to bring on a whole slew of symptoms we’d rather do without. So here are some of the tricks I’ve learned to make it through. Apply as needed.

1. You do not have to break the bank buying presents. Try out a flea market or thrift shop for gifts. The chief thing a gift is supposed to do is show someone you thought about them. If you buy thoughtfully, fitting gift to personality, you can come out on top without a lot of bucks. Remind yourself that it is retailers who have made Christmas into a shoppers feeding frenzy; the season, whatever your religion, is actually not about gifts but connecting to loved ones at this dark time of year and showing them we care. (In January, you can start setting aside a small amount every month so you won’t be caught flatfooted by the next ‘season of giving’.)

2. Or you can make things, write things, hand-paint cards – use whatever creativity you have to manufacture your own gifts. I know a woman who buys ugly bead necklaces at flea markets, takes them apart, and then puts together her own stunning necklaces in much better combinations, choosing the best colors for the individual she’s giving to. She has an eye, and people love her personal jewelry gifts. The money investment is tiny. Besides, it is illegal in most parts of the world to criticize a handcrafted gift made with obvious care. ; )

3. Stay out of the malls and stores. Mass crowds at Christmas can get absolutely rabid, growling and elbowing and making for long lines and grouchy sales clerks. If your sanity is fragile at the best of times, you do NOT need to be in places like this. (The parking alone is enough to give me spontaneous attacks of rage).

4. If you do have some money, or an accommodating charge account, a good bet is buying from offbeat catalogs. If you sign up for just one, they will propagate and you will have dozens to choose from next year. Some of the best buys can come from organizations such as SERV, which gathers fair-trade items that are handmade and relatively inexpensive, from needy economies all over the world. The advantages here are staying out of the stores (see above), finding unique items that nobody else in your family has seen, and if you can afford it, even having them gift-wrapped and mailed straight from the merchant to your family members. All of this adds up to a very low-stress holiday season. The downside: these catalogue items tend to be not-so- cheap, and you will get nailed on the shipping. Also, you must order early enough for on-time delivery.

5. Consider buying your tree, if you need one, the night before Christmas. If the local tree lot is trying to get rid of the last stragglers, they might give you a hell of a deal. These won’t be the shapeliest or best trees, but if you’ve collected enough ornaments or have bushy garlands, it may not matter. Or consider a mini-sized, tabletop tree, which will be in a low price range. Lots of people make trimming the tree on Christmas eve part of their yearly ritual, even opening their presents the night before, and wouldn’t have it any other way.

6. Spend time with your friends. If everybody is busy, or far away, spend time with them on the phone. This is especially important if you don’t have family any more. It is supposed to be a season of love, and if you have had some contact with everyone you love, you will not feel so deprived.

7. Be sure you take in plenty of music that makes you feel good. That does not always mean Christmas music – some of us abominate carols – and it doesn’t always even mean cheerful music. Maybe melancholy classical pieces give you a sense of order in the world. Music does not have to cost a lot. You can pick up any number of old vinyl records and cassette tapes for pennies on the dollar. Music is one of the best and easiest mood-altering substances known to mankind.

8. Establish special rituals for the season, so you can feel festive even if you are alone and sick. Drinking hot chocolate, for instance; decorating the house if you like that; taping up any Christmas cards you receive into a tree-shape on the back of a door. Or have a festival of old holiday movies that you borrow for free from the library. Read The Night Before Christmas out loud to yourself (by a fire if possible).  These are things that will help you feel connected to the mood, or just make you feel it is a special time. (Conversely, if you do not celebrate Christmas, some special non-Christmas rituals will help buttress you against skepticism, disgust, or too much of a left-out feeling).

9. Make sure you have plenty of all your medicines. This is not the time to run out and start spiraling down. Don’t wind up spending Christmas or New Year’s in the hospital. Add extra therapy visits if things are tough. If you can stay connected to even one person who listens to and accepts your icky, non-festive feelings, you will probably be able to squeak through. 

10. Remember that Christmas is ultimately a man-made made holiday, one that the Catholic Church frankly appropriated and reframed to help increase conversion rates. Even if you believe in the story of Christ's birth, historians are pretty sure he was not born on Christmas day proper. This holiday is not ordained by God - there is nothing you have to accomplish and no reason to feel you have not "measured up" if you do things differently from the mainstream. You can choose to celebrate, or you can choose to retreat into your own quiet space. There is nothing wrong with that.

And if you get tired of all that insistence that you should be having a joyous time, remember that at least 50% of the people who are telling you that are faking it, even to themselves. You have plenty of company.

Compared to What?

Self-esteem is a perennial problem for the mentally ill. We have to live our lives at a different pace from the mainstream, with generally scaled-down goals, and sometimes it is impossible not to feel “less than.”  In addition, it’s my sneaking suspicion that we just have to spend more time than most people with the critical voice in our heads, and it’s a louder, more insistent voice. Especially if we are surrounded by “normies”, we can wind up feeling inadequate, to say the least.

It is a truism to say, “you shouldn’t  compare  yourself to others,” and it’s silly. People are going to compare. They are supposed to compare! This is how the human mind works! The brain takes any image or concept, scans through the memory banks to find something similar, and says, “Ah, this is like such-and-such, only bigger or smaller or more colorful.” It lists the differences. That’s how it operates. That is why a good teacher will go at a new concept from several angles and maybe with a couple of stories or similes, looking for the ‘hook’ to previous ideas which will allow students to process something new.

The thing we need to understand is that we are no longer measurable by the old rules.  By definition, we are not part of the mainstream.

We are dealing with tremendous extra pressures and challenges they could not conceive. We are carrying a heavier load, every day. We are going to perform differently. So we will do a lot better if we compare ourselves to our peers, or just to our own levels of functioning. (And anyway, let’s be real – is that mainstream, with its frenzied ideas of materialism and power trips, so totally sane and admirable that we want to copy it?)

Here’s an example. I sometimes pick at myself for taking so much medicine every night. It’s uncool. It’s like being an elderly woman, or an invalid. Then I remind myself that over the years I have cut down on my meds by about half.  I am actually getting better. Another self-critical issue for me is work and earnings. I used to feel bad that I could only work 15 hours a week. Then my doctor told me that at my level of severity, 90% of people could not hold a job – any job – for more than 6 months. I had been working at the library about 5 years by then. Instantly, that 15 hours looked better. And as for money, it takes a lot of skill to live on the miniature amounts you get from the government. It takes a lot of skill even to get them. Can you congratulate yourself on making that work? I’ll bet most of your salaried friends could not do it.

Never mind how the up-and-comers are doing. How are your colleagues doing? Go to a support group and see what is realistically going on for the people there. Maybe you are well off because you are the only one who sleeps through the whole night. Maybe you are on top of your paperwork, or have a more reasonable social life or romantic relationship than half the people in the circle. But you won’t know that until you look at others like you. At least read about them, if there are no groups nearby. You don’t need to reach the upper limits of human achievement! You just have to do okay on one or two items that matter today.

Take time out from your self-flagellation to tot up your small achievements. Anything can count, from taking your medicine more regularly to getting out of bed during a depression. Little things are important. I do not have to be Tolstoy. You do not have to be Steve Jobs. Just pat your bruised self on the back for the things you did right today. You deserve the appreciation.

Deborah Fruchey

You can get her book, Is There Room for Me, Too? 12 Steps &12 Strategies to Coping with Mentally Illness, at Amazon.com, Createspace.com, Kindle Editions, Apple's iBookstore, and Lulu.com. Those last three sources will download a free chapter or two to you!

Grateful

            There’s never been a better time to be insane.

            No, I am not kidding. In 2010, I can live a life indistinguishable from that of the average American. I have a husband, and if I wish to, I can have children. I can go to college, and if I wish to work, and am able to, I am protected by the Americans with Disabilities Act. I do not need to fear being hospitalized against my will, or even being forced to take medicine, unless I am actively dangerous to myself or someone else. And my pills protect me from the worst of my symptoms 90% of the time.              

            And now, because of what President Obama has done, I can even get insurance, for the first time since I was diagnosed in 1985.

            It is a really, really good time to be one of us. Any other time in history, it would have been unspeakably harder.

            In the old days, they would just stone you on the streets during the day and lock you outside the village gates at night, to starve or be eaten.

            In the slightly-less-old days, You could be chained, tortured by water ‘therapies’ that could involve near drowning or smashing you with a wall of water the equivalent of  firehose force till you were compliant. There were numerous other hideous treatments, which I gather worked in that they left people cowed and silent, or dazed and half dead. Your jailers could also bring parties of rich young gentlemen and ladies in for a fee, to view you for amusement, like a zoo. ‘Bedlam’ – Bethlehem Hospital – was famous for this.

            But that was a long time ago, right? Wait, there’s more. In the 1940’s, a science called Eugenics justified Hitler in gassing the mentally unstable residents of a facility called Hadamar. This was long before Auschwitz – we were his early experiments. Think Eugenics was just for Nazis? Wrong again. There were laws passed in the United States, and upheld by the Supreme Court as recently as 1927, that forbad the mentally ill to marry each other and caused 60,000 Americans to be forcibly sterilized so they could not pass on their ‘weakness’.

            As recently as 38 years ago, when I was in my teens and already ill, there were no medicines that could have helped me. None. I would have lived in the hell of my extreme moods and depression and psychosis and nobody could have done a thing except made up theories as to what in my childhood had caused it. I don’t think, frankly, that I would have lived long. They could have warehoused me. They could, in time, have put me on Thorazine, that dreadful drug that sedates patients so much that they walk like zombies, with a Frankenstein automation. And you don’t want to know how easy it used to be to put people away for life.

            We are fabulously lucky to have our disorders at a time when so much can be done to alleviate them. Incredibly lucky just to know that they are medical disorders, no more than that, which we can explain and be treated for. So even though there is stigma, even though I have symptoms, even though I will never be able to work a 40 hour week again, I am tremendously lucky and grateful today.

            I can drive like anybody else, with my husband who accepts me exactly as I am, to see my family, who may think I am a little weird but know that they have no reason to fear me or jail me or hide me or sterilize me. And we will have a good day, eating all the food we are so lucky to have, in the country we are so lucky to live in.

            There are many reasons to be thankful – so many! And I am sure my family will be concentrating on them. But my deepest gratitude goes to simple things: that my medicines allow me the use of my own mind, 90% of the time. And that those medicines were invented and sold before it was too late for me.

            Stigma? Side effects? Bah humbug. The worst is definitely over.

Deborah Fruchey
Is There Room for Me, Too? 12 Steps and 12 Strategies for Coping with Mental Illness,
 is available on Amazon.com, Creatspace.com, Lulu.com, and many other online sources; it is also published as an ebook on Kindle Editions and in Apple's iBookstore.

Like a Real Person

This weekend just past, I got to attend a writer’s conference. It was a rare opportunity for me, and I have my agents – Elizabeth Pomada & Michael Larsen -  to thank for giving me a guest pass to something I could not otherwise afford. It was a great chance to find out new things, and I was profoundly grateful to be invited. I learned scads of important things.

Any person with a mental illness will recognize that it was also an amazing challenge. How was I to pass myself off as a normal person for two days straight? There were some real difficulties involved, starting with getting through my morning depression in record time so I could be functional and in San Francisco at 8:30 in the morning. Then, the trick was to stay at least apparently functional from 8:30 till the last class at 5 p.m., and still handle the 2-hour commute, plus not bite off my husband’s head when I got home. Kind of a tall order.

I handled the first hurdle – the early morning – by going to bed at 8 p.m. the night before with my clothes and everything else all laid out ready. Then I woke – more or less – at 5 a.m. and allowed myself the usual two hours of fardling and fumbling around and whining in my journal about how hard waking up is. Lots of coffee.  Plenty of time for mistakes and false starts and changes of mind. The trick here was to automate as much as possible, so I used BART (the local commute train) instead of trying to drive to the City myself, arriving frazzled, and trying to find parking. That would have finished me before I began! After I arrived downtown, I took a taxi, something I rarely do,  from the station to the Kearney street Hilton. Another thing that works is to arrive early and scope out the territory, so you don’t get overwhelmed by rush and impressions and information. By the time the conference started, I knew where all the session rooms and the bathrooms were, had found the coffee shop downstairs, and had spent a peaceful half hour in a cushy leather chair at a secluded nook behind the stairs.

Surviving the conference itself was something else. For seven straight hours there was one class after another, with a speaker shoehorned in at lunch. This meant a constant barrage of sights, sounds, information, and faking normal in public for hour after hour. I don’t know about your condition; but I am easily overwhelmed by too much stimulation. This was way up there on my stress-o-meter. A year or two ago, I had tried to attend a conference like this. The first day I had caved a couple hours early and run home. The second day I couldn’t go at all. I had to stay home, in bed, with the curtains shut, and sleep it off. It was completely exhausting, and I didn’t acquit myself well.

This year I got through both days. The secret was frequent breaks. Every couple hours, I would go downstairs and sit in that quiet lobby corner with my favorite iced latte and a good book, and just completely shut the whole thing off for twenty minutes. Luckily the sessions were short, and I had time between each workshop – but I would have done the same thing even if it meant missing a session here and there.  I expect those breaks between sessions were meant for schmoozing, but that was beyond me. I could retreat to a dark quiet space, or go crazy. That was the choice.  In fact, the first day I skipped the paid-for lunch altogether and slunk off to the café downstairs, which was nearly deserted. I missed lunch with my agents, but I had a blessed hour of speaking to no one and taking in no sort of information or stimulation. Did I offend my agents? I don’t know. I doubt it. They’re busy and important. I don’t think it mattered to them much either way. And at the end of the conference, I skipped the final hour and sat where I could see the bright sky outside, hear street noises just faintly, and recover my equilibrium before I started the two-hour trek home. There was an entire celebratory dinner that I missed that evening. It would have been fun, but it would also have been way too much. I don’t know about you, but when I have pushed myself too far, I start doing and saying things that make people unhappy I’m around.

So now you know my recipe for those normal-world activities: take a time out whenever you can. It just doesn’t pay to pretend you can handle things when you can’t. Take time to be quiet somewhere, take a pill if you have to, check out of the action, and check in with yourself. This strategy works on the job too. That’s how I got through twelve years of part time work in public libraries: long quiet lie-downs in the lounge. Did people think I was weird? Or lazy? Yeah, probably. But it would have been worse for everybody if I had faked it till I came unglued and had a psychotic episode right there at the customer counter.

There’s a good reason “modified breaks” and “flexible hours” are listed as  ‘reasonable job accommodation’ for people with mental illnesses. Check out this and other information at http://askjan.org/media/Psychiatric.html.

By the way, I may take a number of days to debrief and get back to my version of 'normal'. The first day, that included sleeping till 1:30 in the afternoon. And you know what? That's perfectly OK. I don't claim to run as smoothly as every other car on the road.Those of us with psychiatric disorders are definitely high maintenance. The point is to stay ON the road, however slowly you have to drive - and don't smash into the other drivers. If you can do that, you've won.


Deborah's book on coping with mental illness, Is There Room For Me, Too?, is available on Amazon.com, Barnesandnoble.com, Createspace.com, on Kindle editions, and at the Apple iBookstore.

Photograph of Pain

(Note: This is actually a story rather than a blog, which appeared on Redroom on October 8. I hope you find it relevant and interesting)

In this photograph you can't tell what's the matter. The woman is crying, but she's crying in a beautiful garden with jasmine trailing down the column behind her. You can just see a hummingbird, if you look carefully at that top right shadow.  The woman is well dressed, the sky is blue, and it appears this is a pleasant Spring or Summer day. She is comfortably seated on a redwood chair, and the man leaning over her shoulder looks both concerned about her and attractive. In the background is a spacious white house. On the table are lovely fruits - melons and canteloupe and grapes cut up in wooden bowls, with a pitcher of water nearby; and you just know that pitcher is cold and the water tastes of squeezed lemon.

If you are cold, if you are hungry, if you are homeless or lonely, you will have no sympathy for this woman. Surely, you think, if I could be surrounded by love and abundance, I would not be sitting with puffy red eyes and a mound of wadded Kleenex in front of me.

And in truth, the woman is grateful. She knows how lucky she is. She knows she has everything others strive for all their lives and do not get. She knows it would all be worse if she were alone, if she were dirty and cold, if no one cared. Nevertheless she is in pain, and when you are in pain, you can't think of much else.
Pain is the greatest single feature in any landscape. It is like a mountain of burning granite, so large you cannot see around it or even up to the top, and so hot you cannot escape its radiating presence even if you turn your back. Pain is a mountain that has no path, no matter how many times you have climbed it. Pain is the place you must go alone, even if you are surrounded by friends.

 Maybe you had a good reason for climbing the pain mountain. Maybe it was logical and imperative and inspired. But no matter how much you believe in your quest, the further up the mountain the less sense it will make. As the air grows broiling and unbreathable, you will wonder why you came. Before you reach the peak of pain, you might realize that it was not worth it; nothing could be worse than the ice pick in your heart, the fire of the rocks on the bare flesh of your feet. Reaching the top is pointless, but you are so deep in atmospheric suffering that turning around to go down will be just as bad. The only real way out is to die here. Some people do.

This woman's mountain is insanity, and the ice pick works its way into her brain without reason or warning. She has no idea why she is climbing this mountain. She knows that if she lives to return, no one will be surprised or congratulate her. After all, everybody has to climb the mountain sometime. They assume she will not die up there. She never has before. They assume it cannot be that hard. They assume there must be a good reason. they don't under stand that insanity doesn't have to have a reason.

They do not have this particular mountain in their home country.

The woman takes a pill and starts climbing slowly down the mountain. She will not arrive at the farther side. She will not be further along on her path. She sees the man waiting for her. She hears him say, ‘I love you.' She is dimly aware of the garden at the bottom and the warm bed with the clean sheets.  She will be back where she started. She will be free of the pain. If she just hangs on a little longer.

But it will only be a rest stop. She will have to climb this mountain again, maybe tomorrow. It will happen all over and nothing will change. And she cannot bring home the truth she found at the top – that this is not worth it, that it doesn’t matter. It never matters, the beauty of the country where you suffer. She will come down with the truth in her pocket and show it to no one. Because she promised him. She promised she would always come down.

(Don't forget that Deborah's book about coping with mental illness of all kinds is now available on Amazon.com. If you speak a language other than English, try buying it as an ebook from Kindle, which is able to translate for you.)

Mood Disorders 101

One of the best things you can learn, as a person with a major psychiatric condition, is not to believe everything your brain tells you. And if you have a mood disorder, that goes double for your feelings.

Of course, it is the job of our medications to help our bodies react more realistically to life events, or at least trim off some of the excess. When we have all our chemical ducks in order, a more natural reaction follows.  But despite scary press, pills do not magically alter all our moods. So we have to learn, over time, to take our feelings with a grain of salt.

What I've found is that I will always have plenty of emotion, lots of big reactions, usually more than is appropriate. The anger will always be outsize, often a storm in a teacup that I marvel at later. There will always be more depression than there is good news. There will always be more fear than courage. The thing I hae learned is that emotion doesn't always have a reason. My emotions are bigger than my circumstances. Sometimes they have nothing to do with my circumstances at all. The trick is to know this going in and compensate.

Before I understood this, I was a tremendous drama queen, always the center of a hurricane. People often accused me of trying to get attention,  of 'acting dramatic'. I wasn't. I was reacting exactly as I felt. I just didn't know that my reactions were of jumbo dimensions, and always would be. Now I know, and don't cause The Scene From Hell in public places...mostly.

Here is my experience: If some happening triggers an enormous rush of feeling in me, almost more than I can hold, and it seems I must explode with it this instant: BE SUSPICIOUS. It is probably a chemical surge, and if I act directly on it I will cause havoc and regret it later. This is particularly true if the feeling is anger. If we start yelling without thinking - and of course, this is true of everybody - we could say the one thing that will end that relationship or that job (or that party), pronto. And later, when that wave of chemicals has receded, we'll be saying, "My God, did I really do that? How could I?"

We have to live with the consequences if we give in to instant emotions. And I have learned the hard way that, as a woman with a mood disorder, almost all my 'immediate' responses are inappropriate.  Some psychiatric conditions turn this inward, using the emotions against the bearer, and some die of it. Others, often bipolar like me, turn it outward, and do damage to lives.

That's why I've made it my policy to let the emotions sweep through me like a tidal wave, and then let them recede, before I open my big mouth. The best move, for the moment, is nothing. Later, if there's a real issue buried at the heart of that tidal wave, I'll be able to think it out and deal with it fairly. Perspective is crucial. I've learned to say, "I'm too upset to discuss this. Let's talk later." I've learned to say, "I'm feeling really weird. I think I'll go be alone for awhile."

The next thing to do is to get rid of all that emotion. We all know by now that repressing emotions isn't wise. (I'm just  saying it isn't wise to point them at anybody, either - including at yourself!) Emotions not handled and released are explosive and corrosive. What I am finally learning, bit by bit, is to release them as physical energy. Emotions are energy, and the energy must go somewhere, do something. It must actualize. If you don't want it to poison your interactions with yourself and those you love, you get it out of you via your body. Talking or journaling quite often isn't enough.  Destroy something, if you need to. I knew a woman once who bought cheap plates from Goodwill and then shattered them against the back fence. Or you can pound on something with a hammer. Actually, a heavy home project can be a good answer. Clean the garage. Scrub something. Rearrange furniture. Something that will take long enough to wear you out. A lot of times, the answer can be a big crying jag. A serious bout of weeping empties us out, so we can rest and come back to sanity. It's no accident people often fall asleep after they've sobbed. (And I personally don't think it's an accident that men, who often will not cry, have a higher suicide rate.) Or scream into a pillow, and pound it with your fists.

You get the point. Get that ball of energy out of your body. Anything we can do without hurting or frightening someone, or trashing valuable property, is valid.

After that energy is gone, we can deal with the problem, whatever it is, in a more rational manner. I don't know about you, but I don't want to be known as 'full of sound and fury, signifying nothing'. I want to say one or two quiet words at the right time, words that count - and be listened to.



I'm happy to announce that my new book on coping with mental illness is finally out. You can purchase Is There Room For Me, Too? at Amazon.com, on Apple's iBookstore, on Kindle, and also direct from the publisher, CreateSpace.com, at https://www.createspace.com/3433715. For the rest of September, CreateSpace will give you a 10% discount if you use the code 36Y6UQ9U.

The Outer Limits

Once we have a psychiatric diagnosis, and we have admitted to ourselves that life is going to be different, one of the most valuable things we can do is learn what our new limitations are. As with any serious chronic illness, there will be things to avoid and things we cannot safely do anymore.

First, there is the delicate task of finding out exactly what medicines we need, in exactly what combinations and dosages. This can take years to get just right, and also has to be periodically adjusted. Meanwhile, there are other things we have to figure out.

Can we work? And if so, at what jobs and for how many days a week, how many hours? I knew right away that I couldn't sustain a 40+ hour work week any more. I'd been keeping it up only by means of alcohol, lots of it, daily. So that had to go. It turned out eventually that 19 hours a week was my new maximum, and these could not be 8 hour days. One doctor finally told me, "I don't want you working more than 5 hours at a time. You can tell 'em I said so." This was an enormous help. Most of us have to figure it out the hard way.

The rest depends on careful self-observation.

A key area is pacing. I believe many people with special chemistry could benefit greatly from simply slowing down. The breakneck pace of modern life is stressful, in case you hadn't noticed. Rushing all the time is stressful. Running from one activity to another without a pause is stressful. I soon learned that if I wanted to keep going without coming unglued, I needed at least a small break between activities to breathe and get grounded again.

And I found the sheer number of tasks I would tackle in one day had to come down. Two appointments in a day was enough. Three was pushing it. Four was major symptom time. You of course will have to find out what your own numbers are. But my experience is that the to-do list should be relatively short and basic. Stick to what really matters. Your sanity is more important than any chore on earth.

I learned most of my limitations by 20-20 hindsight, so to speak. After I had calmed down from a nasty episode, maybe the next day, I'd look at it with detachment and ask, What happened here? What was the sequence before I came to pieces? Who was I with? What was I doing? When did it start to feel bad? What was going on then? What would have helped at that point? Over time, certain patterns emerged. I found that for me, too much external stimulation is a trigger: too much traffic, too much noise, too many people, too many new impressions without a chance to absorb them, too much light and heat. Yes, even weather can be a factor. Many people are aware of Seasonal Affective Disorder in winter, but have you thought of the effects of high temperatures? They can do strange things to your brain, something to be aware of this summer. There is a good reason homicide rates rise during heat waves! And it's a little known fact that mental hospitalization rates also rise in the summer months.

Observe yourself, next time things go wrong in your head. Go over it later. What was the last time you felt OK? What was the point when you lost it? Were there any clues that your mind or behavior was going South? How did your body feel? What was going on with your stomach, with your neck? What were the emotions? If you keep observing this way, you may eventually come up with a list of 'triggers': situations or sensations to avoid. Too much hunger or too little sleep, for instance. You may turn out to have a sort of expiry date for efficiency, like my five hour limit. Gradually, you will have a picture of what you can and cannot reasonably tolerate.

The real beauty of this is that you can then learn to head off many attacks at the pass. Maybe not all of them, but quite a few. You can learn to say, "This doesn't feel good, I'm stopping now." Or, "I've had enough. I need to go home." You can say, for example, "No, I won't take that ten-hour bus tour with twenty strangers - that would be way too much!"

Gradually you will find that you have fewer scenes and bad patches. You will hurt fewer people, embarrass yourself in public less often, and just generally feel better about yourself. You have learned to have a modicum of control over what happens to you. It is possible to pre-empt that monkey in our brains, and live in relative peace.

What's it like?

 My friends tell me I have been conspicuous in the blogosphere by my absence. My apologies to everyone, but for two months I was very busy being Bipolar. About all I had to say was, "Owww!" and "Leave me alone."

Which leads to the touchy question: what's it like to be mentally ill? I doubt there's a perfect or universal answer, but I've thought of a useful metaphor.

If one is only asking about Bipolar Disorder, I would say it's like having premenstrual syndrome all the time. I realize that leaves the fellas in the dark, but it's the best I can do, and quite accurate.

On the larger scale of any mental illness, though: what's it like?

I'd say it's like having a baby screaming in the next room. Forever.

What do I mean by that? Well, for instance it means you are always a little distracted from what's happening in this room. The distraction can range from tiny to total. In my own life, it means I miss a lot of very obvious things that anyone else can see. I feel like that mythical member of the Argonaut crew - what was his name again? - who could see things miles away and years into the future, but was always running into stuff that was right in front of him. I have taught myself a laser-like focus so as to ignore that screaming baby, and anything outside that cone of attention is just lost. I have managed not to notice that people are saying hello to me, that a tree across the street has been brought down and cut up by huge machines that sat there and growled all day, and that the house next door was having its front completely remodeled and projected about ten feet further into their yard. Yes, really.

The screaming baby also makes social interactions difficult. You miss obvious social cues. You can hear the baby as loudly as you can hear the person talking to you - or louder, in which case you may give some very disjointed answers. The screaming in the other room can make you upset even when there's every reason to be happy - in this room. You can make stupid mistakes over the simplest things. Because you are always under an extra pressure the people around you don't have, tiny things stress you out much more easily. To people around you, it looks like you're overreacting. They can't hear the baby.

Sometimes you have to leave the room altogether to go take care of that baby, to try and soothe it.

Here's the problem. Nobody really knows why the baby is screaming. That makes it hard to give it what it wants.

You can feed it drugs, either legal or illegal. That may stop it or at least get it to pipe down for a while. Then again, it may not. You can drown it out by really wild or dramatic living. Or you can develop some ear-plug activities that temporarily mute it for you. My ear plugs are reading, writing, music, and frozen yogurt (sex often works, but that's not guaranteed). Some people use TV, or shopping, or sleeping. There are any number of minor addictions that can serve.

But it's only temporary. Because you have to stop reading, or running, or knitting, or the drug wears off, and you can hear the baby screaming again. Like I said, we don't know what's wrong. We can't fix it. And it doesn't matter much if you love your baby or not, or whether your doctor is good, or whether you get therapy or live in an upscale neighborhood. It's not about this room where everybody is partying; it about the dark inner room where the baby is, a baby you don't remember ever wanting or birthing. It is just there, and it is your responsibility.

And sometimes that baby screams so loudly that EVERYONE can hear it, and it totally ruins their party. Well? What are you supposed to do about that? Smother it? If the baby dies, you die.

So if you are one of the lucky ones who has no baby screaming in their mind, next time a PASC friend of yours does something weird or rude or totally unacceptable, perhaps you can consider their burden, not just your own.


I would be interested to hear from PASC people what they think of this metaphor. If you have another metaphor you use to help explain your condition, I'd love to hear it. I'll add it to the collection.

Deborah


[PASC = Prone to Altered states of Consciousness]

The New Deal in Medicine

In 1984, I paid my health insurance bill a tad late one month. Things were tight. But I'd had the same insurance company since I'd been a baby riding on my parents' policy. I didn't think twice about it.

Two weeks later, a letter came informing me that my payment was not just late - I was terminated. And since I had recently been diagnosed as bipolar (by their doctors!), my 'application' was being denied due to my 'pre-existing condition'. I didn't think it was fair, but I was 26 and healthy, and I thought I'd just apply somewhere else. I didn't know then what mental illness would cost me. I didn't know I'd ever be eligible again. And, darn it, I hadn't had the foresight to get married before I went crazy! I might have been able to sneak in on a husband's policy. Or not...

Ah, I see some of you know this story.

Three weeks ago, that injustice was at least technically righted. The new Health Reform Law requires that people with 'pre-existing' (is having the wrong genes pre-existent enough?) conditions such as mental illness will be able to buy insurance as part of a national high-risk pool - starting in September, I believe. By 2014, we cannot be denied coverage, period. This is a huge win for us, though I could wish the culmination came sooner. It no longer matters to me personally, since I am on MediCare. But before that happened, I had gone years without insurance. I know what it's like when you don't dare go to the hospital.  I can't think of anything Washington has done that made me this happy for a long, long time. It's nice to know that my government is capable, at least once per century, of being humane.

There are some other benefits that folks with special chemistry will appreciate. If you have MediCare Part D as part of a Disability package, you will as usual receive coverage for the first $2,700 in pill bills, then be liable for the next $4,000 before government help kicks in again - the infamous 'doughnut hole' - BUT this year you will get a $250 rebate check. It's not much, but it'll help. After 2011, Part D participants will receive a 50% discount on all those brand names your insurer doesn't like to cover. In psychiatric research, it's often the newest breakthrough drugs that we need - the expensive ones that have no generics. So that 50% discount could make the difference in getting the help you need a decade before the patent expires.

Another great boon will be the end of lifetime caps. This is effective immediately. No one can tell us now that we can't check into the hospital again because we've been as loony as we're allowed to be for one lifetime. But annual caps can still be set, so I don't know how that's going to work.

What is not entirely clear is the issue of mental health parity. Obama's administration is solidly behind enforcing the 1996 Wellstone-Domenici Parity bill, for what it's worth. That bill provides that as of January 1, group health plans of more than 50 people, IF they offer mental health benefits as well as medical-surgical benefits, and IF you are employed full time, must offer them on an equal basis. In other words, no more of this "you can see a therapist 10 times a year" stuff (unless they are also limiting you to 10 medical visits!).

Up until now, such group plans were available mostly through employers. Most PASC patients who are seriously ill aren't employed, at least not full time. Hopefully the new high-risk pool will be considered such a ''group plan",  even if it's not an employer. But that remains to be seen.

The other great eventual benefit is the government subsidies which will help buy health insurance, once that's legally required in 2014. So many of the PASC live near or below the poverty level. The law provides subsidy help for up to 400% of the poverty level, which currently stands at about $10,000 a year. This sounds adequate.

Right now, your best bet is to keep an eye on the Health & Human Services Department. They are required to set up & maintain a website which will supply information about these kind of health insurance options. They should be one of the first to tell us how to apply for the high-risk pools. It's not up yet, but hey, it's only been 3 weeks!

None of this is likely to improve the shortage of psychiatrists and psychologists who actually ACCEPT MediCare and MediCaid. And nothing yet guarantees that such professionals will accept the insurance of the high-risk pool.

But on the whole, this is the most encouraging news in 70 years - if you're not a Republican - so stay tuned to this Bat Channel and this Administration. (Hint: re-elect the representatives who did this for you. They put their jobs on the line. They stood behind us. Let's return the favor. )

Name-calling

I promised in my first blog to take a stab at what people with a psychiatric diagnosis ought to call themselves. (Obviously we cannot call ourselves 'people with a psychiatric diagnosis'. Can you say that ten times fast?) So here we go.

I have given a lot of thought to what we have in common. What I decided was that we are subject to altered states. What is an altered state? Simply put, it is a state in which one's reality strongly differs from the more or less agreed-upon reality that those around us tend to share (no, I am not going to define 'reality' for you. Uh-uh. Go find a dictionary).

For instance a person having a panic attack is in a state of unnatural terror which does not seem to have a logical trigger. A person having a flashback has literally moved to the past and is once again experiencing it. A person who believes that extra terrrestrials  are gunning for them is not living in the same kind of reality as most people around them. The thing about 'reality' is that most people in a family, culture, or group are share a mental and emotional landscape. An altered state is simply one where the facts and the rules (and maybe the sensations, sounds, etc) are different.

Are altered realities good or bad? I couldn't say. I personally find them bad for daily functioning but really good for writing poetry. Some people feel they receive unique spiritual gifts and abilities there. Altered states have existed all through history, and many cultures have legitimized and valued them. Some examples are visionaries, shamans, and saints. Often if an altered state is connected to religion it will be considered not only good but inspired. In our culture, altered states are now pathologized, which makes for stigma.

Yet altered states are quite common: they simply go unrecognized. If you've ever slept, or been drunk or stoned or high,  or meditated, or been hypnotized, you've been there. If you've ever suddenly heard that little voice that tells you where you've left your keys, that's one too, in a way. Many people who are not considered 'sick' have experienced serious depression or anxiety. The difference for those of us with a label is that we experience them randomly, involuntarily, and so strongly that they interfere with functioning in the 'standard' reality. And we can't turn these states off or control them without the help of powerful drugs. This is commonly called 'mental illness', which is a term I'll use from time to time, merely for convenience.

But I'd like to introduce a less pejorative, more inclusive term. It's a acronym: PASC, Prone to Altered States of Consciousness. Sometimes I also call it 'special chemistry'. I stole that from the 'special needs' people and it's a little ultra-PC for my taste. But it's a bit better than continually labeling us as 'sick', because that's not the whole story.

The problem is when varying realities collide. Chaos ensues. We all know what happens when political or religious realities collide at the dinner table. Some people will kill each other or start wars to establish their reality over others'. We've been seeing a lot of that internationally - Terrorism is a spectacularly nasty collision of realities.

The basic problem of the PASC, as I will call them, is how to survive when your head is in one reality and your body is in another. Sooner or later you come back to your body, and then there's hell to pay.
Learning how to survive that is the real topic of my blogs. That's what I intend to focus on.

Deborah

Pre-publication copies of my new book on coping with mental illness are now available for purchase at www.roomformetoo.info in pdf format.

Sane Expectations

This is the time of year when we anticipate, start dreaming of what we'd like the year to be. It's human nature to carry around expectations and hopes. Part of us is always mapping out the territory ahead, planning how to handle it or what we'll get from it.

When we find out we're mentally ill, all our expectations change in an instant. Will we lose our jobs, our spouses, our status, our self-respect? Will we have to be put away? Will we take pills for the rest of our lives? Will we slobber and wear a strait jacket? (All the images are bad. We're coming out of thousands of years of brutality and fear and ignorance). Maybe a minute ago we were vaguely afraid of 'the insane' - and now we're one of them! Nobody thinks, "Wow, Napoleon was insane too. How totally cool!"

Suddenly, we have to figure it all out over again. Suddenly, the biggest challenge is to have a calm, functioning, peaceful mind. And that turns the whole American paradigm upside down.

Is that a bad thing?

Imagine how this country would change if people did what made them feel sane and happy first...Instead of what would impress, or intimidate, or make more money, or please their families or stockholders. What if no one put up with relationships that 'made them feel crazy' any more? What if everybody earned only what they needed and spent the rest of their day doing something more interesting? What if everybody chose a career based on their deepest dream instead of the prevailing job market? What if we lived life slowly, with pauses to enjoy the scenery? (Which industries would collapse and which endure? Food for thought. I'd put my bet on the arts & entertainment.)

When you have a mental illness, chances of a high-pressure, big-money job drop pretty low. Suddenly it makes more sense to do what you care for, even if it 'doesn't pay' - since you can't make the big bucks anyway.  Our gift as psychiatric patients is to be lifted out of the 9 to 5 cage. Some people would give their eyeteeth and both arms and a few spare toes for that chance. Yeah, I know all about the dreariness of being in the margins with a low income. I've sung that song for a long time. But when was the last time we looked at the positives? Is it wrong to change the emphasis from achievement to quality of life?

So I've made a new type of resolution this year: in 2010, I'm going to enjoy the life I already have. After all, I'm not the first to notice it: the way much of America lives is utterly bats. 

Look at it this way: I'll have psychotic attacks, and they'll have heart attacks. Seems equitable to me. And I'll have peace of mind, when I have a mind at all.

Who knows, it might start a revolution.

Perhaps that's what society really ought to fear from the lunatic fringe.