Leaving the System – Is it for you?

Most likely, what I am saying is relevant more to US readers more than it is relevant to readers outside the US, however, I think readers anywhere may find value in reading about my experience.  Or maybe not.

I can’t assume what your reasons are for considering leaving the System, but first of all, allow me to clarify that I am speaking of the Mental Health System and not Western medicine on a whole. There are some who make a full exit from Western practices and only see alternative healers.  This was something I seriously considered.  However, I decided against the idea.  I won’t get into the whole debate right now or any kind of discussion of the faults of Western medicine.  We all know there are many. The world is a flawed, shaky place.

I have heard the argument that if you stay healthy, you won’t need healers at all.  I don’t buy it.  Show me a perfect body.  Show me a bike tire that never goes flat. Be realistic, folks.  We break easily.  They say we humans are quite biodegradable.  That’s why many of us get buried when we die.

But I decided to can mental health care entirely, that is, all types of psychiatric care and anything that resembles traditional mental health counseling with a professional caregiver.  I won’t go to “group therapy” and I shun most types of “support groups.”  If the leader is a “mental health professional” and that person is not a participant in the group, I will surely not participate.  I also choose not to attend “12-step” meetings or any type of meeting in which it is assumed that the participants are mentally defective and are there for the purpose of improving upon themselves.  I choose not to attend “relaxation” meetings where it is assumed that the participants are flawed because they are “anxious.”

I stay away from many types of self-help groups that assume helplessness, but I enjoy educational classes that empower and strengthen. There’s a marked difference between a writing class, cooking class, knitting circle, or public speaking class  and a “support group” where people the object is to make each other “feel better” but there’s no end product, such as a crafts sale, public reading, or tasty meal with leftovers at the end.  I enjoy learning new skills if they have practical use or attending interesting lectures or going to museums or entertainment or humor to have a good laugh or to gather together to celebrate or pray or honor or mourn or eat or walk or run or party or drink coffee or have a doggy meeting or just hang out.

All these things sound like so much more fun than “mental health” activities.  Where have I been all these years?  I was stuck in programs and halfway houses, in therapists’ offices, and locked up in hospitals.  What a world. This, sadly, was the center of my life and I choose to make this no longer be the case.

Nano and blogging for me this year, 2013

I dropped out of Nano, but now, I’m beginning to wonder.  I’ve done so much blogging that I wonder what the word count total is between my nano project and all the blogging I did afterward, all total!  Does it come close to 50,000, or am I way off base? That plus the stray comments here and there that I’ve left on various miscellaneous sites here and there, my all-self-important opinion cuz I am the Center of the Universe, which I can’t say too loudly cuz I’ll be accused of PARANOIA, but that doesn’t add up to that much more in terms of word count anyway.

Oh, I am so, so important. I only say that because I hate being ignored.

I’m too lazy to count up my words right now.  Only curious.  What the heck.

Rewriting myself

How you use words is vital.  Are you ready to rewrite yourself?

Who has called you “mentally ill”? Think about it.  Think about what it means to be ill and well.

When we were young, we’d get a sore throat.  First, just a scratch, then our throats would hurt more and more.  We’d begin to feel tired and unusually warm.  Finally, maybe we’d tell our mom or dad, “I think I feel sick.  I don’t feel up to going to school today.”

Some kids didn’t say a word and they’d try to go to school anyway.  Maybe something fun was happening at school that day, or more likely, they felt pressure over homework or sports.  Sometimes, a teacher or coach would notice the kid looked sick and would send the kid to the nurse. The kid would end up going home with a note.

That was what “sick” meant in my day.  You couldn’t do things you usually could do, and you spent a lot of time in bed and not in school.  I liked the “not in school” part and I liked that I got to spend time in my room alone.  If you were sniffly and your sore throat didn’t go away and your fever wouldn’t stop, someone eventually dragged you off for a throat culture, which came out positive or negative, and depending, you’d end up on penicillin.  What was good about a positive throat culture was that it guaranteed more private room time. Or that’s how I saw it.  More private writing time for me.  Sleeping felt good.  It sure beat school with all the mean kids and teachers.

So what is “mentally ill”?  It’s something different, isn’t it?  You can’t measure it with any thermometer, especially not those cheap plastic ones they now insist we buy. Not even that old-fashioned accurate glass one you secretly stowed away and you hope never breaks (I won’t tattle on you) will EVER detect mental illness. So if your kid has mental illness, how will you know it?  How will you be able to properly measure it and make a decision to your kid home from school?

Answer #1: Not everything is measurable with scientific tools.
Answer #2: Not everything that’s human is within the spectrum of “illness” and “wellness.”  Therefore, not all human experience needs a medical “diagnosis.”
Answer #3: When making decisions about the direction of the lives of our children, we should include them in the decision-making, depending on their willingness to take responsibility for themselves.  As elders, we can only hope our children’s maturity and wisdom increases with time.

You may be surprised to hear me admit to Answer #4: Not everything can be expressed in words.

I can’t speak for others.  I had heard of “mental illness” when I was growing up in the 1960’s and 1970’s, but I thought it was for young Frankenstein monsters and their new, adopted brains and for runaway kids or for unlucky kids who accidentally took very bad drugs at teenage parties and then afterward, no matter what anyone did, the very bad drugs wouldn’t come out of their bodies.  I knew there were kids who were rumored to be “screwed up,” but if I asked around and investigated, I’d eventually find out the kid had been in a tragic car accident or had a very bad sports injury that didn’t heal properly.  I spoke with a girl who took many pills.  I asked her why she did this and she said her head hurt all the time and no one believed her, so she took pills to make the pain go away.  She said the pills made her stomach hurt.  I asked her what the pills were.  She said it was a new thing called Tylenol.  she said she found it in her parents’ bathroom but there was more at the corner drugstore.

These memories I have from my school of these kids represented the typical ones thought of as “screwed up.”  These kids, I believe, eventually were sent to “shrinks.”  That’s the last I heard and I have no idea how their lives ended up.

There were the drinkers and party-goers.  These were popular kids and this drinking activity, even if done to excess and even if occasion breaking of the law was done all in good fun and even if a car was involved, unless a kid died of course, this was all considered “normal” and the kids ended up “successful,” got married and made loads of money.  Our class presidents and various popular offices up and down the lines, over the years, drank quite a bit, and this was “acceptable.”  Kids like this went to college after public school as pre-meds and such, partied their way through college and then became a rich doctors, accountants, business people, and proper law-abiding citizens that we all admire.  Can we measure this, please?  Numbers?  Diagnosis?  How many “friends”……

Oh, the road not taken……

Anyway, no “shrink” sitting in some office today believes I came from such a town. Who knows what they think! The shrinks assume I am hard of hearing, that my vocabulary is severely limited, and surely, I am incapable of remembering my hometown at all, so what does it matter? They take one look at me and assume I’m a dimwit. Great diagnosis.

I must be a mass of confused emotion.  Mania.  Tourettes for sure.  What’s that one where you deliberately pull pieces of hair out?  It begins with T.  That’s one I don’t want cuz I happen to value my hair.  I need a disease that causes me to pull my boobs out and hopefully they stay out and don’t pop back in. That would be handy so I wouldn’t have to put on a bra every day.

Maybe shrinks need to get “obsessively staying on a permanent vacation break” disorder. Every single one of them.  How about putting them all on a leper island?  We need to put thick walls around the island with secure locks on those gates to keep the shrinks locked in.  Let’s protect our society!  Homeland Security at its finest!

Maybe I have “Silly Blogger All Alone on Thanksgiving with Nothing Better to Do Disorder.”

It all depends on nomenclature.  What you choose to call it. So around age 23, and surely, by 24, I had adopted the term, “Mental Illness.”  This was my new identity.  I threw it around like Halloween candy.

I didn’t have mental illness, but what I’d found in fact was a new bunch of folks to hang out with and the new bunch of folks seemed cool and accepting enough.  I have no clue what was REALLY going on with anyone there. Cuz under all the layers was a history I never, ever heard. It all got buried.  Therapized and translated into MEDICAL and PSYCHIATRIC terminology that wasn’t our true life experience.  These professionals translated it and gave us a new vocabulary. We then adopted this vocabulary.

It’s essential to retrain ourselves to stop using their language if we want to ever think for ourselves again.  No, I don’t agree with some of these “programs” that insist that “medical terminology” and all “clinical language” is TABOO.  No way. I do agree that we need to redefine ourselves AS WE ARE, NOT AS WE HAVE BEEN DIAGNOSED BY SOMEONE ELSE.

YOU ARE NOT A DIAGNOSIS.  Are we clear on this?

Do you believe rumors about a person, or do you believe what you see based on your own five senses when you meet the person face-to-face?

The diagnosis is the rumor.  You are who you are face-to-face.

From now on, I don’t suffer from Binge Eating Disorder.  Before I entered therapy, I had never heard the word “binge.”  Nor had I heard of “eating disorders,” and you bet I had no imaginary “Ed,” either, and no fairy godfather Voice of Ed ever talked to me! I’ve tried and tried to hear this “Ed,” and the therapists insisted that I talk to this imaginary “Ed,” but really, I would rather talk to God and tell God to please take the therapists off my hands.

I do, on the other hand, suffer from an inherited set of traits that lead to periodic polyphagia, that and my varying desperate strategies with this oddity.  If anything went wrong that you could call “disorder,” it was the disorderly fashion that the World of Mental Health and its totalitarian personnel and structures dealt with me over the next three and a half decades.

The sad consequence was the split in my immediate family following my dad’s death.  No, I didn’t do anything wrong.  I didn’t sin.  I didn’t do anything morally bad that caused the split or say anything or omit anything. But I feel that if I hadn’t been immersed in the System, that is, the Mental Health System, this split wouldn’t have occurred.  No way do I blame any kind of “illness.”  I didn’t have one as I define it.  The System decided I have one and what was this but a rumor, their definition, someone else’s opinion.  I guess most of my family made up their minds based on rumor alone.

Today, Thanksgiving, this saddens me.

I had a great day, though.  Puzzle and I hung out.  I wrote this piece.  I realized that much time has passed and I am moving further and further away from the System.  As this happens, I am regaining my ability to write.

Gradually, I am shedding my old ways, and adopting new ways.  It’s amazing that now that I no longer have to cope with pressure from “therapists,” hounding me about my eating, I no longer feel the need to go running to the scale to “check” my weight to make sure I still have a meager amount of “control” left.  I’m thrilled that I can make my own food choices without someone grilling me all the time about what I eat, or forcing me to make some grueling confession once or twice a week.  Sure, I mess up plenty, and would love some advice, but the freedom sure has been worth it.   I am far less panicky over my weight than I ever was.

Slowly, I am making new connections and reconnecting relationships that lay dormant while I was far too immersed in “therapy,” not my fault, but thankfully, a few friends realized this and stuck around patiently.  I am grateful for their persistence.  I am amazed that while some, true, have turned their backs, many others have stuck around and see what happened for what it is and nothing more.  They know that in time, I’ll be okay.

As for those that turned their backs, it’s sad.  Many simply didn’t know me “before,” or they think that I was always the “Angry Julie” I’ve turned into over the past two years or so, not realizing that it was only a due to psychiatric abuse (abuse from therapists, etc) and not some weird personality fluke of mine or moral problem or even starvation.

I’m actually getting better.  Not only trying to figure out how to rebuild my life, but I’ve already started rebuilding it.  This excites me immensely.  You have to start somehow. You put down one brick.  Then another.  Eventually, I’ll have a built myself a enough stepping stones to reach the mainland.  They say no man is an island, and if I keep at it, I won’t have to be alone anymore.

 

Calls from political candidates and their appeal to the lonely or socially-isolated voter

Hi again.  I am bursting with writing ideas I want to share with you all on this Thanksgiving Day.  I promise I won’t bore you with a gratitude list unless it’s something completely different from what everyone else is putting up there. As you know, or you may not, there’s no big table here, no kiddies, no turkey, no mom and pop, no football afterward, no family arguments, no family to argue with.  So I’m quite happy NOT to be boring you today with any tales of the usual Thanksgiving nuisance.   I’ve been spared that for about 10 years now.

I want to mention briefly that for a while my local online paper, which the locals do read I suppose, stopped sending me emails and I have no clue why.  Then, the e-mails just as mysteriously resumed.  I was out of touch with local politics for a while and I don’t own a TV.  By coincidence, the gap coincided with our local election.

It’s difficult for me to relate to many issues here in town that families with kids face, cuz I’ve never had any.  I can’t relate to people who have lots of money and want even more money.  I see both sides of the fence sometimes, but mostly, it makes want to cry when low-income people and people without jobs, adequate housing, and healthcare are disregarded.  I see the stigmatization of the poor as a growing problem here as there is so much emphasis on beautifying our town.

So one evening, I got a personal phone call.  This caller saying her “brother-in-law” was one of the candidates.

My Google Voice spams the recorded calls from the autodialers, which I appreciate.  I can look back in my phone records, but I believe this call was indeed from Watertown, or at least appeared to be.

So this lady told me all about her brother-in-law.  You guys know how lonely I am.  We’d been on the phone about 45 seconds, maybe less, when I said, “I’m so touched that you called me personally.  No one bothers with me anymore.’  I told her about my political concerns.  She said, “I’ll tell him right away.”

Was she really his sister-in-law, or some hired person?  If she was hired, she was a good faker.  She was a nice person, too, and seemed to know what I was talking about when I mentioned certain local issues.  Not only that, she touched my heart that night.  But I feel taken advantage of.

They sure know who’s lonely in Watertown.

The beginning of my exit from the Mental Health System

Today is November 28, 2013.  It’s not the beginning of this journey, but today marks the beginning of my recognition that my exit from the mental health system is intended to be permanent and my intention is to leave in completely.  I intend to shed my “mental patient” history entirely from my medical record. It was only today that I discovered, quite by accident, a way to do this.  I have decided to start this blog and share my journey as it unfolds as a way to assist others in doing the same, if they find themselves stuck in the similar situation that I was in myself.

I am in a state in the USA that is establishing “managed care” for those of us that have both Medicare and Medicaid simultaneously.  It’s well known that holders of both these insurances are doomed to the worst care imaginable, never mind the stigma of “permanently disabled.”  We are assumed to be severely ill, incapable of managing our affairs, and the government apparently is so concerned that we won’t stay on our poison pills or keep our slavery appointments (not that you’d blame us) that here in my state, they have established a managed care system as bait, telling us “incapables” that the care will surely be improved.

Sounds like “supervision,” doesn’t it?  When I first heard that the government had dreamed this up, I thought, “Wow, they really want to make sure we behave.”  I thought this was going to be a nightmare.  No way would I enroll in this managed care option!

However, I suddenly realized that I can play their game just fine.  We are so forgetful, after all, such “poor historians,” they say, and we “lack insight” anyway.   All that ECT wiped out the memory of over 50 hospitalizations and I’d say over 50 drugs they gave me.  I don’t remember any of that.  Funny, I do remember my college education well enough, but never mind that.  The docs sure forget their education and surely, their morals very fast as soon as the first payoffs from Big Pharma come rolling in.

It is my intention to use this system to its full advantage.  It’s late right now and I’d like to explain my plans more fully some other time.  It’s actually past midnight and I need to get to bed.  But I’ve given you some intro.  I’ll write some background information, too, so you’ll see where I’ve come from as well, and you can see if any of this is at all helpful.

Note as of May 2014: As I stated, I wrote this at the end of November.  I made so, so many “plans” to erase my mental records and the plan I made then was one of the many that fell through. I made more after that. Nothing worked until now….

Some kooks in Boston

I can’t recall which stop it was on the Orange Line I was at a week or so ago.  It wasn’t a bad night to go out, so I figured I’d linger around and observe the humans.  People everywhere with cell phones, in groups, schmoozing in and around each other, some already beginning on their first drinks of this Saturday night.  You know how I am.  I watched to see what would happen.

So I saw this dude and I felt so sorry for him.  Guess it takes one to know one, as they say.  I knew right away: must be Tardive Dyskinesia.  What’s worse, he had some stick-like thing in his hand, waving the darned thing.  I kept saying to myself that he seemed to have so little control over what his extremities did that he’d better be careful with the stick. Considering he had that “mental patient look,” he was likely to get locked up, waving the stick around in a way that would cause a stir.

I felt so sorry for him.  I myself narrowly escaped TD.  I am lucky that I stopped the antipsychotics when I did.  Most my age are not so fortunate.  This guy, let me tell you, had it all over his body, both arms waving this way and that, and his entire torso joined in, too, swaying around.  People were watching him, staring, in fact, following his movements intensely.  I told myself, “Watch out, Buddy, you’re gonna get nabbed.”

But he kept going.  A crowd gathered. Not only that, a bunch more kooks came.  I said to myself, “Did some mental hospital let everyone out on pass?” Of course, I was joking to myself.  Maybe they were just dudes from some local bar, already high as kites. They looked wicked stoned or strung out, though, on something I sure never took.

So these people were singing at the top of their lungs.  Eeks!  Bunch of them.  Standing up and singing.  I figured you gotta be rather drunk to dare to do something like that in public.  I told myself these dudes will be arrested if they keep up the ruckus.  They kept up their singing for a very long time.  I was surprised at the attention they got.

Some street musicians joined in the fun, but I said to myself, “These street musicians must feel embarrassed associating with a bunch of mental patients and drunks.  We have such fine street musicians here in Boston, and I think they should stay away from these loser types, lest it ruin their reputation.”

You wouldn’t believe the nonsense stuff the singers were singing, too.  I figure you gotta have some kind of OCD to repeat the same lines over and over like that.  Who else would do that?  Isn’t that what the disorder is called?  Or is it Tourettes if it’s done out loud? But if it’s in a group, is it a “shared delusion?”

Then, of course, I had to consider myself.  I was sitting.  I and my companions were seated in a row in the audience, and when the performance was over, everyone gave the conductor, the entire opera cast, chorus and orchestra a hearty, warm, and vigorous standing ovation.

Name of opera: Four Saints in Three ActsLibretto: Gertrude Stein
Composer: Virgil Thompson
BMOP, Jordan Hall, Boston, MA
November 16, 2013.

How to write while exhausted (these instructions especially applicable for those of you with MFA in Creative Writing degrees, and anyone else that dares to write)

In case you were wondering how I got so funny lately, it’s cuz I write while half asleep.  There are those writers who have mastered writing late at night or writing in the early hours, but me, I’m tired all the time, any ole time of day no matter when it is. However, I deal with it.

That’s part of life.  It’s part of having kidneys that don’t work too well.  It’s more or less a given that if your kidneys don’t do their proper job, your blood isn’t going to be good quality.  There’s not much that can be done about that except to get used to it.

Trust me, the anemia thing and being tired all the time is the least of my worries and I cope fine with it.  If YOU have a problem coping with it, go to hell.  I dealt with far worse while doped up on very bad drugs during much of my life.  I’m thinking of my late 20’s.  I could barely write a sentence.  I couldn’t walk properly.  My hands and gait were unsteady.  I couldn’t get out of bed in the morning due to dopiness on the drugs, and I was too sluggish to walk the dog.

Think about it: in my late 20’s, all I wanted to do was to smoke cigarettes and watch TV.  Now, I am motivated to help others and to change the world.  I have big dreams.  I am determined to get out of the hellhole I’m in.  I’m functioning far better now than I was then.  Sure I bitch and moan, but I’m so darned persistent.

So here are a few tips:

1) If you are exhausted, write while lying down.  Didn’t we do this as children?  Sure we did.  It was considered a girly thing, to write in our diaries every night by the light of a night light.  My parents gave up begging me not to use the night light to see by.  They’d tried to convince me that I’d go blind if I kept doing that. I’m not blind yet.  So at least those of us sneaky ones that did this as kids far past bedtime already have the Writing While Lying Down skill.

Nowadays, we are blessed with terrific Writing While Lying Down technology to assist us writers.  We have Dictaphones, text-to-speech software, word complete, various detachable keyboards you can use (instead of having your laptop turn you into a furnace), and all sorts of pens and pencils that will write even while upside-down.  You can put on a headset and speak into it.  There are various tablets and all kinds of tables you can put on your bed or sofa.

2) Now that you are nice and cozy in bed, have your dog curl up right on top of you while you write.  This will surely enhance your writing, depending on the size of your dog and whether or not little Fido starts to snore. If he does, kick him off.  Time to start a new chapter.  Or maybe tell him, “Aw, baby, I didn’t mean it, let’s cuddle and take a snooze.”

3) Don’t sit for long periods.  If I do that, my legs start to swell up.  So from now on, everything you write is going to be in these short, sweet little packages that deliver a punch.

4) As you start to fall asleep while writing, lose track of what you are writing about and change the subject, totally confusing your readers, then leave them hanging and don’t wrap up what you were saying.  Call it quits and go to bed.  End with some stupid joke that only insiders get.  Make excuses for your behavior.  After all, you’re tired.  Everyone should understand.

Don’t reveal you’ve ever taken an antipsychotic

If you want to start a new life, and erase your “psych” diagnosis from your history, don’t tell anyone you ever took an antipsychotic, even the janitor.  Word gets around.  You wouldn’t believe how much people can’t keep their mouths shut.  Besides, you don’t know what fancy cell phone that janitor has, and next thing you know, he’s gonna whip that thing out, and say, “Hmm, Zyprexa, huh?  Let me go look that one up.”  Next thing you know, all his janitor buddies are yapping to all the other janitor buddies, and the whole town decides you’re a dangerous lunatic who is plotting a shootout in the movie theater tonight.

Also, please don’t admit you ever took an antidepressant either.  I wouldn’t try lying and saying it was prescribed for back pain cuz I doubt that will work.  Trust me, if it shows up on your “medical history,” you will be assumed to “lack insight” and nothing you say about anything you experience will be believed.  Ever again.  Forever.

That’s right.  If you ever, ever took any of these meds, and you ever, ever had “psych” on your record, you are considered a dope when it comes to self-reporting.  Everything you say will be doubted.  So you tell them you have a headache.  It’s normal for most healthcare practitioners to try to get a sense of how bad anyone’s headache is, but if you have “psych” on your record, chances are, if you say, “I have a headache,” you won’t even be heard.

What if you had a lump in your breast?  Good luck.  If you have “psych” on your record, you might have to make a lot of noise.  You might be told, “You are only trying to get attention.”  Once, I was incarcerated in a mental hospital, and while I was in the shower I found a lump in my breast. I was young and I had no clue what a lump really felt like or how to self-exam.  All I knew was that maybe I should ask.  But first, I went to another woman patient and asked her what to do.  She said if it were her, she’d go to staff and not take chances.  So I did, even though I was afraid of being belittled or accused of “trying to get attention.”

They told me, “You are only trying to get out of the hospital.  You want an opportunity to go get a mammogram so you can escape.”  What was I supposed to say to that?

This was back in the 1990’s.  If I recall correctly, it was a private hospital and they had my mom drive me to a breast ultrasound place and back.  No, the little mental patient didn’t escape.  She was a good girl with her mommy.  My mom and the breast ultrasound people were condescending to me, knowing I came from the mental hospital.  Never mind they were dealing with a sensitive part of my body.  My mom was always putting me down in front of people in these waiting rooms, saying snide comments that embarrassed me.  I was glad to get the ultrasound over with and felt like such a fool by the time it was all over, never mind that they said the lump was “nothing.”

Well, that was one experience.  Another time I was outpatient, doing okay, and found a lump, this was in 2008, or maybe 2007.  I was in grad school at the time.  I kept the lump secret for a while and told myself I didn’t want anyone knowing.  I was convinced I had breast cancer and that I didn’t want to go through breast cancer treatment, and that I’d keep it secret and just let myself die.  I told myself I’d be very, very brave and not tell anyone and just slip away.

Oh, goodness, what romantic ideas we all have about life and death.  Death is messy.  I know now that you can’t get away with disappearing.  People tend to notice and get pissed.  Or let’s put it this way, YOU notice when your friends start to hate that you are dying, and they even get hostile and rude.  There’s nothing romantic about death, and it’s ugly.

So I told my therapist, finally, that I had a lump.  My T was in her glory cuz she was kinda big on this sort of thing, getting people to mammograms was her deal, I guess.  She got me hooked up with the mammo people at the hospital where she was connected.  I hated going and I felt married to those people. I hated the stink of the mammo machine.  I also hated the insulting remarks about my weight that they made every time I went there.  Finally, they made me go in for so many unnecessary tests, and they were about to operate for no medical reason.  A mammo tech told me, “I don’t think you should have to go through unnecessary surgery just cuz they can’t find a lump that isn’t even there to begin with.  This is illogical.”  She snapped a few photos and proved them wrong.  I walked out of there and told myself I’d narrowly escaped a big, unnecessary hassle.

I then made the mistake of telling my brother how smart this mammo tech was, and all he did was to insult me nonstop and tell me how stupid I was to allow extra x-rays to be taken.  I can’t win, and I hate it when people insult me and tell me how stupid I am.  I promised myself I would never, ever tell my brother my business again.  I was sick of the insults.

However…I have had so few medical problems in my life and I am lucky.  Of course, when I broke my tooth in 2010, I was totally not believed and told it was “all in my head.”  Now this is because I was a mental patient.  I broke my tooth while binge eating.  I had this newfangled therapist that I thought was oh so great.  Of course, this was the abuser, but I didn’t realize this.  All the abusers I thought were oh so great, the best therapists when I first met them, they were God.  So I had her cell number, and I phoned her and told her I broke a tooth.  Never mind that I broke it in a binge.

When your tooth cracks while you are biting down on something, you feel it.  You even hear it.  It goes crack like the snap of a bolt of thunder.  I knew it was broken and it hurt, too.  It hurt afterward to bite down on anything.  But guess what?  My therapist sent me to a psych ER.  Yep, she wanted me to get evaluated, she said, for a psych ward, and I blindly followed her advice.

So wouldn’t you know it, she sent me to one of the worst ER’s in Boston. We have the absolute crap places here, our city has bad ones and you’d think Mass General would have this ritzy palace, but no, it’s a hellhole.  Patients sleeping in hallways and crying on these bench-like chairs, all of us sitting in this germy room for hours with no one around except a few security drinking coffee at a desk.  Patients shaking and crying who were withdrawing from bad drugs, drunks coming in pissing in their pants, guys off the street, homeless people with nowhere to go, women looking for shelter from their husbands, runaways, and people who had been “sectioned.”  We were nothing but dirt to the staff, and they didn’t care. Most of us didn’t get “placed” that night, so we slept on cots not in the ER beds, but in the hallway while staff and visitors shuffled past us to tend to the “more important” heart patients and people who had had accidents and other patients that were far more worthy of their time.

I ended up at McLean.  So I suppose a few days later finally I got someone to listen to me about my tooth.  Finally someone said, “We’ll get a doctor to look at it.”  I heard they took people to dentists, but in order to get that done, you had to have lots of money and hire a nurse to accompany you and babysit you while you went to the dentist.  That sounded like baloney to me anyway.  This was 2011, not the day of Girl, Interrupted.

After a few days, the doc came.  So this doctor took a flashlight and shined it into my mouth for less than a second and said, “I think your tooth is fine.  You only think it hurts.  You are anxious.”  The staff encouraged me to take antipsychotics whenever I complained that my tooth hurt after that. I was in the hospital for three weeks.

When I got out, I found that taking the antipsychotic pills was sure not fixing my broken tooth.  In fact, McLean had done nothing for my broken tooth and had given me a new anticonvulsant drug that made me wobbly when I walked.  This was supposedly to stabilize my mood.  I told my outside doc that the drug, called Trileptal, was causing ataxia. Ataxia is one of the most common complaints that patients have about Trileptal.  Problem is, patients aren’t told what ataxia is, though they see it on the list of side effects.  This is what causes the “swaying” effect from it, when you sway back and forth while you are standing as if you are on a boat.  I had no clue.  The staff didn’t know what ataxia was, either.  The inpatient doc would ask, “Are you getting side effects from it?” The staff always told me the “around and around” feeling I had was “mental confusion,” or “psychosis” and no one put two and two together.

So when I told Dr. P that the Trileptal was causing ataxia, she said (get this) “You have always been wobbly from antipsychotics and you MUST stay on the Trileptal, otherwise you will become UNSTABLE.”  Now, what a scare tactic, and lots of sense that made! I should have told her the Trileptal didn’t fix my tooth very well and didn’t stabilize my tooth and I needed an oral surgeon far more than I needed her pills that were clearly making me FALL OVER!   I didn’t need more broken teeth.

Guess that line she gave me that day is even funnier now than it was the day she said it in her office.  I think it’s the damn funniest thing she ever said to me.

Conclusion: After you get off these psych meds, don’t tell a soul you were ever on them unless you want to get completely discredited.

Subsidized housing

When I applied to subsidized housing in 1992 it seemed like a no-brainer at the time.  It took only a year to get in.  I can’t even recall which month it was that I moved into the apartment I had on the top floor in my other building, a few blocks from here.  I lived there until 2008.

This is Section 667 Housing.  It’s state-run.  Many people have never heard of Section 667, but my town isn’t the only town that has it, there are other towns as well.  It’s not the same as Section 8, which is a voucher program, and federally run.

The building I was in was half federal and half state, from what I recall, but I don’t think the federal half was Section 8.  Honestly, I don’t know too much about it or the technicalities.  I don’t even want to think about the old place.

Think about it: I was 33 years old when I moved in with a bunch of old people.  Not only that, but I was a very young 33, that is, I sure didn’t look my age at all.  I was a kid who’d go buy cigarettes for her boyfriend and get carded if the store owner had any doubts. My interests sure weren’t bingo all day long, going to casinos, learning about how to care for diabetes, watching television, grandchildren, and all the other boring things those neighbors did.  Oh, they also had exercise classes which consisted of lifting your leg and then lowering it.  I liked to go out jogging or riding my bike, no, not a stationary bike, but my old ten-speed.

But for me, moving to subsidized housing sure had nothing to do with age. It was economically the thing to do.  I could have moved to “family housing,” but the wait was seven years.  Financially, I couldn’t wait seven years. That and the “parents” problem that I couldn’t exactly explain over the phone to these housing people.

See, when I got my first apartment in January 1987 in Watertown, I was rather desperate.  I had to get something.  I was stuck in a lockup joint and my parents were pressuring me and the docs, too, were getting on my case.

One day, we were in a family meeting.  All of these people that is, the nurses, the docs, my parents, they were all demanding that I go live in a halfway house.  I told them absolutely no way was I ever going to set foot in one of those places again, with the uncaring, unfeeling staff I couldn’t even talk to, no privacy, and fellow residents I couldn’t even relate to and had nothing in common with.  I said I loved my dog, Hoofy, and I wanted to be with Hoofy and care for him as it was always meant to be.  I would have it no other way.  Finally, I convinced them.

They had another grueling meeting and my parents were saying, “Why not have a roommate?”  This was because they wanted to save money.  But I reminded them of the last roommates I’d had in Vermont and my decision that roommates aren’t for me. The two that kept the place spotless (which was nice) but never said a word to me the whole time they lived there. Then the one after that who tried nonstop to convert me to her religion. Again, I told them I valued my privacy and I would find a place.  I began to look.

I didn’t care what town it was in.  All I wanted was to get the hell out of the hospital and away from my parents, but at the same time, on my income, I knew it would have to be “supplemented” from…er…”dad.”  And I’d have to make up a few stories to this new landlord about some kind of employment.  All mental patients did that in the 1980’s.  Plus, I had to find a place that would take Hoofy.

Yes, I found a place, and luckily, my parents didn’t insist on embarrassing me by coming with me and “inspecting” the place.  At the age of 29, I sure would not have wanted my parents along with me while I signed a lease.  My mom would have said something condescending to make me feel like I was in kindergarten.

It was at night that the realtor, or real estate person (not that I know the difference) showed me the place.   She claimed the electricity was turned off at the time, whether that was true or not, I have no clue.  Yeah, I got ripped off, but not too badly. It could have been far worse.  The main ripoff was regarding parking.  The lease agreement was deceptive about that. My parents made a big deal over how stupid I’d been to get ripped off and that I should have been more careful, but I ended up stopping driving anyway and I gave my car to my mom.  So they got a car out of it.

The heat in the apartment was excellent.  You couldn’t adjust it, but it was so nice and warm. Warm enough all winter long. I never had to run a space heater and I was never shivering under blankets.  No worries there, and I didn’t pay a cent for heat or hot water and from what I recall, electricity was also included.  The landlord was absentee for the most part and the neighbors were extremely friendly without being nosy.  No one “dropped by” uninvited, but if I ever had a question or concern, I knew I could ask any of them.

As I said, there was the “parents” problem.  When I moved in, the realtor, or the landlord, can’t recall which, insisted that my dad cosign the lease due to my questionable income.  I think this is standard practice and understandable since I said that my dad was going to help me out until this “job” that I was vaguely referring to came through. It was embarrassing, but many young people have to deal with that embarrassing “cosign” thing.

However, the “parents money” thing was grueling.  I was dying to get out of the obligation.  Let me explain.  So I didn’t really have enough money to pay the rent, and not long after I moved in, the landlord raised it, but he never raised it again the entire time I lived there.  That, too, raising the rent like that, was a ripoff thing, but considering everything, I rather lucked out with this apartment, despite all my parents’ put-downs.  But my dad had a way of being grueling about money.

He’d demand to know every single cent I spent.  I hated the privacy problems I was running into.  So I’d go out to coffee with someone and the cup of coffee was a dollar.  I’d have to write that down for my dad, and where I spent that dollar, how much I’d tipped, who this friend was, and then he’d grill me on where I’d met the friend, on and on.  Control, control, control. Every cent controlled.  I began to realize that financial independence meant all kinds of freedom from my dad’s nonstop questioning and it also meant privacy and having a life of my own.  When I applied to subsidized housing, how was I to explain this to the housing people?  Of course, I didn’t.

They said, “How can you afford to live in your current apartment on your income?”

I finally told them my dad was helping me out.  They told me if he had the money, then obviously he was supporting me and I didn’t need subsidized housing.  I told them his finances were not their concern, and he could no longer afford to assist me.  I was quite firm.  And my dad was pressuring me, too, that he couldn’t afford to give me much more money.

It meant freedom to me to move into the fifth floor apartment in 1993, even though I didn’t belong with elderly people at age 33.  I felt sad to leave my other apartment at the more central location on the bus line.  The new building was remote and inconveniently located.

What I never realized until I’d been in elderly/handicapped housing for a while was the stigma of living there.  You get badly discriminated against when people know you live there. They turn up their noses at you.  Townspeople think it’s a nursing home.  Even the pharmacy thought I lived in a nursing home!  I was insulted and embarrassed.

Especially when I moved to this building, which is more elderly and the units are not specifically “handicapped,” the stigma is worse.  You would not believe this, but families literally dump “grandma” here.  The object is to leave “grandma” here so they don’t have to pay her bills.  It so heartbreaking.  I mean, it’s great for “grandma,” too, the financial independence, but the being dumped part and the “final resting place” feel of living here definitely sucks.

I see a lot of sad, lonely, elderly people and I want to cry.  They all go downstairs for this “community meal” and this is supposed to be “elder services.”  They’ve got their walkers and their oxygen tanks, and they watch me whip out past them with Puzzle every day, me and Puzzle, rain or shine.

These old people aren’t like me.  I can’t relate.  Never did, really.  I’m still in my 50’s.  I want this stigma off my back.

I have an application in for another housing in Boston.  It isn’t “elderly,” it’s “mixed,” and so there will be all ages, that is, young and old together.  I was assured of this when I applied.  Today was Puzzle’s birthday and I promised her that by her next birthday, we’ll be out of here.