What if I read this at a NAMI meeting?

I was actually asked to speak at a NAMI meeting recently.  I couldn’t do it because I had a class.  It would have been a scream to read this essay at one of their meetings.


6/9/2006


 


PC: “CONSUMERS”


 


 


I can’t help but conclude that the person who invented the term “consumers” was some do-gooder parent who couldn’t stand hearing their kid being called a “mental patient.”  No, it wasn’t the kid who minded being labeled a mental patient, but the parents who, in their shame, had to invent another word for what we really are.


 


Think: “Consumer” means nothing.  It means Consumer Price Index or Consumer Reports.  A consumer protected by Ralph Nader.  A consumer buys a car, a computer, carpeting, or coffee.


 


Do we call cancer patients “consumers”?  Certainly not.  Consumers of what?  Cancer care services?  Chemo?


 


Who really does the buying here?  The drug companies market to doctors, not to patients.  For the most part, we have little choice regarding services; we use what’s covered on our insurance. 


 


Okay, “consumer” implies one who discerns, makes decisions regarding acquiring something.  A consumer needs or wants something and chooses what to buy, where to buy it, and by what means.  A new TV.  Gloves.  Chocolate.


 


We aren’t even the ones doing the buying.  We take whatever insurance we can get, from the workplace or from the state or federal governments.  Very few patients choose their health care plan; it is decided for them, which means we are not consumers but recipients of health care plans and health care in general.


 


Some do-gooder parent (or patient in denial) wanted to emphasize the pick-and-choose aspect of mental health care, implying that patients are discerning and proactive.  But do we really need to be called “consumers” to prove this?


 


Truthfully, mental patients, as a subset of patients in general, are the least able to make choices about their care.  The looming of “involuntary treatment,” “locked ward,” and “privileges” drive my point home here.  Why should we cover up the fact that it is the lack of choices is what defines us?   Pink paper.  Section 12.  Restraints.


 


There was only one time that I was allowed to make a choice about my care.  Due to the unreliability of Medicaid cabs, I had to stop seeing my therapist Dr. Barbara Rosenn, a fine psychologist who helped me immensely.  I was given a choice: Dr. Elsa Ronningstam or another therapist whose name I forget.  On Barbara’s recommendation, I chose Dr. Ronningstam, one of the biggest treatment mistakes I’ve ever made.


 


What choices the term “consumer” does not imply are the most important choices a person with a mental illness ever has to make: the choice to seek treatment, the choice to cooperate with treatment, the choice to be willing to heal.  The meaning of the term “consumer” doesn’t include this willingness.  “Patient,” on the other hand, specifies a person who is a recipient of medical care.  “Mental patient” is a person receiving mental health care.  Not all mentally ill people are patients; many do not enter treatment, sadly.  But people who recognize their illnesses generally are those in treatment or seeking treatment, those that should be proud to be mental patients, those proud enough to shove away the hands of those that pat our heads, beam with token pride, and call us their little “consumers.”  God help us.


 


 

Sage City Saga Revisited

Here’s another piece from the “old blog” that I truly enjoyed writing:


6/16/2006


 


SAGE CITY SAGA


 


 


It was once common for a mentally ill person to lose all his or her friends upon becoming ill.  Back when I got sick (1980) it was almost universal.  It became a sad joke among us when we realized we would have to earn a new set of friends and that these people would most likely be from inside the mental health system.  Even those that I thought were friends for life didn’t stick around after my first hospitalization.  Many patients agreed that social discrimination was worse than job or education discrepancies.  Having experienced all of these, I would have to agree.


 


I once played in an orchestra called the Sage City Symphony, in North Bennington, Vermont, conducted by Louis Calabro.  I began with the orchestra in 1978 when I first moved to Vermont; Lou personally invited me to participate.  The orchestra was made up of community residents, Bennington College faculty, and students at the college, and we rehearsed in an elementary school in North Bennington.  Because I had studied music at a previous college and my main instrument was trumpet, I was given a special welcome; they needed trumpet players and now they had one.  I played first trumpet, the lead part.  There were three trumpets altogether.


 


During my second year with Sage City Symphony, I composed a five-movement suite for orchestra called Tara’s Dream.  After many rehearsals, the orchestra could play the piece, and the performance was fairly well done.  Both the audience and the orchestra itself gave me a rousing standing ovation after the piece was finished, and several people gave me flowers right up there on stage. 


 


That year and the year that followed were perhaps the peak of my experience with Sage City Symphony; from then on, everything went downhill.  I was too ill to continue with my studies at the college, so I moved in with my parents near Boston for about nine months, and then returned to Vermont.  I moved into a half-duplex near the school where the rehearsals were held.  I had gained a few pounds, wore thrift store clothes and make-up.  I was assigned third trumpet, not first as I had played in the past.  It was about the same time that I’d been seeing that therapist Pete Collier, whom I mentioned in my last entry.  The concert for which we were rehearsing was to be held a few weeks before Christmas, 1982. 


 


One of the pieces we rehearsed I was already familiar with: Charles Ives’ Variations on “America”.  I had played a symphony band arrangement of the piece several times with high school and college groups.  Variations on America wasn’t my favorite piece, but it did inspire me to write a short piece called Variations on “Pomp and Circumstance” to celebrate my high school graduation.


 


The passage in question involves the three trumpet parts at the end of one of the middle variations, which ends with only the three trumpets and percussion.  The third trumpet plays on the downbeat while first and second play on the upbeat.  Boom (rest) (rest) boom (rest) (rest) boom-chick! the “chick” being the first and second trumpets.


 


Because it’s a well-known passage, every trumpet player who has played this piece is familiar with the discrepancy.  Apparently Lou Calabro wasn’t, though he had the score in front of him while he conducted.  Again and again he had us play those last few measures, yelling all the while, “Julie, it’s on the offbeat, the offbeat!  What is the matter with you?”  I was playing what was written in my part, and I knew I was right.


 


Discrimination against people with mental illnesses takes on many forms.  At www.schizophrenia.com we sometimes discuss discrimination on the job and in school.  With the advent of the Americans with Disabilities Act, discrimination has diminished significantly, but when it comes to disability resulting from mental illness we have a long way to go.  Lou Calabro was discriminating against me in the most cruel and blatant fashion that I could have imagined.


 


Over and over he had us play those few measures.  I held my ground and continued to play on the downbeat.  Lou slammed his baton on his music stand.  One of the cellists excused herself and tiptoed off to the ladies’ room.


 


Finally, I handed my part to Susie, the first trumpeter, and she said to Lou meekly, “She’s right, Lou, she’s actually right.”


 


I know what I should have done.  I should have marched up to Lou and told him myself: “Look, see?  You are not blind.  Look right here in the score.  The third trumpet plays on the downbeat, while first and second play on the upbeat.  See?  See?”  I would have pointed to the exact spot on the score.  I knew it was there.  Boom, boom, boom-chick!  I should have said, “Lou, I know you’ve lost all respect for me because I have a mental illness, but having an illness doesn’t mean I’m suddenly stupid, or that I’ve lost all the musical knowledge I had before.  Boom, boom, boom-chick!  See?  You only doubt me because I’m sick!  Admit it!  If I had the flu, would you doubt my musical ability?  If I broke my leg, would that mean I could no longer distinguish an upbeat from a downbeat?  Is this kind of illness much different?”


 


I never truly made a comeback in the musical world.  You hear about people, talented people, leaving the field for a while to recuperate, and then creating a sensation upon their return.  It was not that way with me.  When I returned to school in 1998, I concentrated on the written word.  It hurt too much to play music.


 


On the night of the concert, I wore a skirt two sizes too big for me, a sweater with holes in it, and carelessly applied make-up.  My hair was greasy and uncombed.  My sleeves barely covered the razor cuts on my arms.  I decided to drive to the school so I could get home quickly after the performance.  This was it.  I would show them I knew the difference between an upbeat and a downbeat.  I was not stupid.


 


On the occasions that you think you’re on top of things. You are often the biggest fool of all.  Lou Calabro was a fool, and I was going to prove it to the world, but I, too, was a fool….


 


The temperature was in the single digits that night, and the roads were thick with ice.  My old Saab sputtered around the school and toward the parking lot for the performance.  I shifted gears and rounded the corner.  And then I saw before me an empty parking lot.


 


The concert had taken place the night before.  I had missed it.  I came on the wrong night.


 


After I was discharged from the hospital, I did not return to Sage City Symphony.  I was done.  Finished.  Ruined.  No mention was made of my absence that night.  There was no need.  Someone sent me flowers and then I never heard from her again. 


 


I threw the flowers away.  I threw everything away.  I made friends with people I met in hospitals, but most of the relationships didn’t last.  I gave up driving.  I gave up cigarettes.  And eventually, I pulled my life together, and I’m able to see my experience with Sage City Symphony for what it was: discrimination, plain and simple.  I don’t regret not showing up for the concert; it seemed a fitting end to the story.  What I do regret is that I didn’t speak up for myself.


 


Lou died several years later of lung cancer.  The orchestra staged a performance in his memory.  I didn’t attend.


 

More on Beings and The Thing: MInd Torture

Here’s the piece I came up with in June, posted in the old blog, that describes some of the tortures the Beings come up with:


6/13/2006


 


MIND TORTURE


 


As early as twelve years of age, I recognized Mind Torture.  At the time I described it as, “All the little men in my head fighting against each other.”


 


That description wasn’t far off from the Mind Torture I experience today.  Imagine your head fighting against itself.  Imagine your brain in such turmoil that it becomes inflamed enough for your skull to crack.  Your mind seeps through the cracks and is exposed to raw air, and recoils as if having touched a sliver of glass.  The incision stings.  You are allergic to yourself and cannot escape; you are imprisoned along with all your selves in a leaky space suit; in a short while, the oxygen will be gone, and it is in this moment that you are suspended, waiting, burning, hating.

Beings and The Thing

Many people have asked me to write about the Beings and The Thing.  I am only now beginning to be able to write about them effectively.  This video illustrates what it can be like living with Evil Beings:

Click here 

The Thing was worse.

Sometimes I try to write about The Thing and the Evil Beings try to interfere.  It can get very complicated.

Now I really feel like God

http://local.live.com/?v=2&style=h&lvl=10&sp=adr.100%20Warren%20St.%20Watertown%2002472

The large, two-section, four and five story building in the middle is mine.   My apartment (from which I am writing to you now) is in the right, five story section, the “B” side.  If you listen closely–yes, put your ear very, very close to your computer monitor–you can hear QB sighing in his sleep.

God

10/21/2006


 



GOD


 



I’ve been sitting here at the library for two hours staring at a blank document and–nothing.  My intention was to write a follow-up to the past two entries.  There are many possibilities but maybe I wanted to talk about God for a little while.


 


I often doubt that there is a god.  God is that doubt.  God is the contradiction.  God is the love marbled into my self-hatred.


 


If I’m tail-chasing, God is not the tail; rather, God is the never-catching Verb.


 


I prick my thumb with a pen nub.  God laughs.


 


My hands and I are trickling along a spiral.  I’m slinking toward God, God that stings like fresh lavender.


 


Flush with pink, I slide a finger over the threshold.  God wipes it away.  Again, I present to God a fleshy finger, a second offering.  God denies it.


 


God denies me everything: honesty, faith, hope, love.  God thrusts the curtain shut, and in a flash there is nothing but darkness, blood, vermin.


 


In the darkness, I do not have a tail to chase.  I only have the tiny, soft hairs on God’s skin, oh rapture–


 


On the verge, God’s agony smashes mine, and a third offering brings God to a roar.


 


 

More….When will I ever learn????

10/20/2006


 


WHEN, OH WHEN WILL I EVER LEARN?


 



Like hell practice makes perfect!  I haven’t learned a goddamn thing after all these years of being a mental case!  I still want to do things my way, never listening to anyone else, always the risk-taker, always the fool.  Here is the lesson, encapsulated:


 


IF doctor says, “Take your medicine.” THEN take your medicine.


IF doctor says, “Take an extra pill.” THEN take an extra pill.


IF doctor says, “IF you’re having symptoms, THEN take an extra pill.”


AND you are having symptoms (such as paranoia or racing thoughts or voices)


THEN you sure as hell better take extra Thorazine!


 


But me?  Naw.  Did I think I was above all that?  Did I think I could overcome my problems without the extra Thorazine?  I wasn’t very creative with my excuses this time: “It makes me sleepy.”  “I don’t like taking it.”  “I forgot to take it.”  “I didn’t have any water to take it with.”  My friend Joshua looked at me–even the dog looked at me, shook his head, and sighed.


 


How about, “Thorazine’s an ugly color.”  “It tastes like hog piss.”  “I’m allergic to the yellow dye in it.”  “I can’t stand the artificial sweetener in the coating.”  “Spell-check won’t accept it.”


 


But no, I went along my self-deluded way, trying to deal with Evil bare-fisted.  Evil almost beat me down, my dog was trying to dig me out of the Pit of Hell (nipped me a few times in the process) and then swoop! along comes Dr. P little miss deus ex machina who I see for all of 20 minutes once every three weeks or so; she pops a little Thorazine gem into my mouth that melts and the sky opens up and GOD HERSELF speaks to me, saying,


 


“Julie, take the fucking Thorazine.”


 


“Y-y-y-yes–”  I suddenly realized I was topless.


 


“Julie, take the fucking Thorazine.”  It was Dr. B, his face puffed out about five times the size it should be.   


 


“What the–okay, okay, I’ll take it.  Just leave me alone.  I said I’ll take it.  Okay?”


 


“Julie, take the fucking Thorazine.”


 


How I landed in Dr. R’s office I still haven’t a clue, but my shirt was back on.  The clock read noon, and correspondingly, church bells outside on Bow Street chimed the hour.  Dr. R closed her appointment book.  “Then I’ll see you Tuesday,” she said.


 


“Yes, and I won’t forget to take extra if I need it,” I said.


 


“Keep up the good work.”


 


“I’ll give him a nice petting for you.”


 


Popping pills isn’t as bad as psychosis.  It gets tiring at times.  Still, I wish I’d stuck a pin in Dr. B’s inflated head when I’d had the chance.

Dog knows best

10/19/2006


 


WHY, OH WHY DIDN’T I LISTEN TO MY DOG?


 



Why did I listen to the Beings instead? 


 


QB told me, in every doggie way he could, that I needed to take my PRN (meaning, “as needed”) medication, Thorazine 100 mgs.  First, he bit me.  That should have been enough of a message.  I took a PRN and he bit me again, meaning that I needed more.  I didn’t follow through.  QB became as aggressive as he’s ever been, barking at one thing after another, attacking tree trunks and telephone poles, and of course, me.  He threatened to kill the janitor guy in our building even though he wasn’t vacuuming or picking up trash–QB wanted to kill him simply because he existed.


 


The Beings ran rampant, and depression took hold.  I stumbled through each day sleepily following the commands and non-commands of the Beings.  Yes, it’s true, I could easily enough have taken one or two Thorazine tablets to eradicate the Beings, but I didn’t.  First, the Beings erased the idea of taking Thorazine from my mind.  Second, they erased the idea entirely from existence.  The verb “to swallow” and the noun “Thorazine” could not coexist in the same sentence. 


 


QB did what he could, biting me a total of four times, and nipping several more times.  My friend Joshua, who has correctly interpreted QB’s strange signals more often than not, urged me to take a PRN, but the Beings erased Joshua’s words before they got from my ears to my brain. 


 


Sleep became not only necessary, but a desirable I hated, as was eating.  I slept about 11 hours a night and frequently added a two-hour nap when I could in the afternoon.  I dragged through each day ready for bed as soon as I woke up in the morning, ready to eat as soon as I put my fork down at the end of a meal, if I had a meal at all; most of the time I ate a half gallon of ice cream in one sitting, once or twice a day.  I held the jug in my lap and dug into the soft ice cream with a large spoon, over and over while the Beings cheered me on. 


 


By Tuesday (two days ago) I was ready to die.  I figured that if I were dead, the Beings wouldn’t be able to torture me anymore.  As I trudged down Lexington Street for the zillionth time, I prayed that I would disintegrate and be absorbed into the sidewalk.  Later, as I sat at the computer, I imagined myself dying and becoming a tuft of grass.  Beings can’t destroy grass; nothing can destroy it, I thought, and then a Microsoft Calendar reminder popped up to remind me that I had an appointment with Dr. P the next day, Wednesday, which was yesterday, at 9am.


 


How Dr. P, my psychiatrist, manages to knock sense into me when no one else can is beyond me.  Maybe it’s her clipped, self-assured manner.  Or maybe it’s because she’s got the M.D. after her name.  I briefly told her my situation, as best as I could, while she scurried among my records, then she looked up at me, nibbled on the cap of her blue Bic pen, and said, “Julie, I really think you need to take some of that extra PRN Thorazine.”


 


Knee-jerk response: “It makes me sleepy.”


 


Dr. P scribbled in her notes for a minute.  When she wears skirts, I can’t help but glance at her legs, which are incredibly muscular.  Whatever she does at the gym I’m sure would put me to shame, and the awe and distraction I feel is intensified when her arms, too, are bare. 


 


I quickly looked down at my feet.  She said, “You know it’s better to be sleepy than to have symptoms.”


 


“QB has bitten me so far four times.”


 


Dr. P removed her reading glasses with a twist of her hand.  I could see a piece of her hair caught in the frames.  “Well, then, there you have it.” 


 


I took both PRN’s yesterday, and felt a hell of a lot better by evening.  I decided to look over some papers for graduate school.  The Beings were furious at this, but already I had my weaponry against them!  This morning I awoke and felt as though I had another chance at life. 


 


Why didn’t I listen to my dog in the first place?  For 13 days, the Beings tortured me.  Those were 13 days I could have spent writing, 13 days I could have been happy, 13 days I lived my life the old way, the way I lived when my medications were not right.  QB’s bites were not lacerations; there will be no scars, there were only small breaks in the skin to remind me: Don’t go back there, not even for a visit.


 


 

Prozac Puppy

waiting for walk

10/14/2006

PROZAC PUPPY

Here at my little hideaway at the library, I am seated near the “dog” books again, and I happened to pick up one on dog behavior treatment. I leafed through the last chapter, which included drug treatment, and I noted with amusement that the author had listed many of the psychotropic medications that I had taken in the past, almost as if he’d copied the list from the Physician’s Desk Reference. Then the author presented the list again, pared down to only the drugs used for dogs, Prozac among them.

QB started taking Prozac on Tuesday. His aggressiveness has gone a step too far. He bit me three times within two weeks while we were out on walks. I didn’t do anything. I just happened to be in the middle, while he barked at the offending object–twice other dogs, once a guy carrying tires (yes, the kind you put on cars)–and he became overstimulated, snarling and carrying on, and bit me. Dr. Marder, his behavior specialist, said this was no accident. QB did not want to be dominated at that moment. Also, QB has shown unusual hostility toward children, and frankly, I’m scared. I’m scared of what QB might do to someone–some stranger in the wrong place at the wrong time.

Dr. Marder told me that the only significant side effect of Prozac was decreased appetite. QB is taking 10 mgs daily, quite a dose for a 29-pound dog! The capsules are sea green and cost about a dollar apiece. I sneak the medication into his kibble breakfast and add Iams Savory Sauce, in the flavor of the week–this week is bacon–along with his vitamins. I’m guessing he likes his Prozac because it gets eaten fairly early in the meal.

Prozac isn’t the only med QB takes. He also gets Benadryl at night, which he takes with a gob of peanut butter. No, the Benadryl isn’t for allergies–it’s to make sure he sleeps at night.

QB and I take our bedtime pills at the same time. The alarm on my watch goes off at 7:30 sharp to remind me to get his Benadryl ready, and to take my own bedtime meds. QB, however, is cleverer than that. He starts bugging me about his Benadryl at 7:25.

Is the use of Prozac for dogs “unnatural”? Is it “cruel”? Consider this: the majority of dogs that are brought to vets for euthanasia are not old or sick, but have behavior problems. Some communities require euthanasia for dogs that attack humans. I don’t want QB to be among these unfortunate pets. I want my dog to live a normal, happy life, and if Prozac enables him to do so, then so be it.

Bus

top_pic1

BUS

When I was eight years old, my mother decided one day that she was too busy to pick me up after my piano lessons; I would have to take the bus home. I had never been on a bus before, not even a school bus, let alone ridden one without the supervision of an adult. I was a very small child who wouldn’t easily be noticed, so my mother instructed me to wave a red handkerchief at the bus when it approached, to get the bus driver’s attention. That I know of even now, this isn’t a standard technique, but it sure beats jumping in front of the bus.

I admit I was scared. Very scared. The rush hour traffic on Mass Ave whizzed by so fast that I might as well have been on a major highway. Now and then when a car passed it splashed in a puddle and I was drenched with cold, salty water. I lost my mitten twice, the second time permanently. Snots dripped down toward my upper lip. I snorted them back up but they rolled back down the groove below my nostrils. It didn’t matter. I wiped my face with my sleeve; everything was wet, anyway. I began to cry. Finally, I saw the bus.

As it approached it seemed like a great animal, an elephant, maybe; it had a face. Or a clown. It smiled at me, or, rather, sneered. Looking carefully, I noticed the rubber part of one of the windshield wipers, in desperate effort to wipe sleet and salt from the giant windshield, had torn away from the metal part and was dangling like a man hanging from the gallows, swinging this way and that, and I held my handkerchief, my mother’s red handkerchief that was now hopelessly stained, and I waited for the bus to stop.

It didn’t.

I trudged back to my piano teacher’s house. I had failed. I had failed and Mom would yell at me and call me bad. It would take hours to walk home and as a small child I didn’t have the stamina. My only hope was that I could bum a ride home, or partway home, from another piano student’s parent. Other kids’ parents were so nice, it seemed. I was always amazed that Karen M could talk to her mother like she was her friend–well, like you and I are talking now. I didn’t think mothers were supposed to be approachable and kind. But Karen M wasn’t around to rescue me now.

My piano teacher got my mother on the phone and explained the situation. “You didn’t wave it hard enough,” my mother said to me. The crackle in her voice wasn’t from the phone connection. “You need to wave it high.” As she said the word “high,” her voice became squeaky and animated. The next bus was coming in an hour and I had to repeat the same routine over again.

I repeated the same routine over again with the same results.

“I’ve called the MBTA,” my mother said, “and complained. Oh, I gave them a piece of my mind. Passing by a little girl like that. A little girl in the cold. A little girl who could have been hit by a car. A little girl who shouldn’t have had to stand there twice because some stupid, incompetent bus driver wouldn’t pick her up! Who do they think I am, some irresponsible parent? No, I gave my little girl explicit instructions, and the hanky, the hanky–you didn’t get it stained, did you?”

Nowadays I consider myself a competent rider of the MBTA system. Armed with my TAP card (for persons with disabilities) I can go anywhere I want relatively cheaply. Last night I came home rather late on the #73 bus, which was crowded and rather unpleasant-smelling; a combination of booze-breath and garlic nauseated me. As the bus rumbled closer and closer to Waverley Square, the crowd thinned out, and I saw a tiny girl with pigtails, about eight years old, snuggled in a seat, holding her toys, apparently asleep, no parent in sight. I glanced around, incredulous. This little girl was riding alone?

At Waverley, she woke with a start. I could feel her panic as she swung around.

“Mommy–”

The girl’s face eased into a smile.