I do not Agree to the proposition that I am Worthless

I have a lot to say about this, but my brain refuses to work at this moment, except to comment that if mental health care sucks hind tit in America, what must the situation be like in less “developed” nations?

Art by Rob Goldstein

To: Supervisor Shirlee Zane
Supervisor District 3
Sonoma, CA

Dear Supervisor Zane,

Thank you for considering  my story for your listening session to hear public comment about parity and mental healthcare.

And, thank you for your advocacy for people with serious life threatening mental illnesses.

For many of us the Behavioral Health System simply does not work.

To some of us it looks as if it does not want to.

In 2009, I was diagnosed with a severe dissociative disorder.

I see a psychotherapist twice a week and I realize that this is an achievement and yet I want to state that this should be the norm.

The idea that I should be grateful for receiving the only treatment that is known to work for this illness is absurd and places me in a beggarly role.

My problem is that my illness now requires a more intensive structure…

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My Magic Wand

When I was in active Pediatrics practice, anxious parents used to ask me all the time, “When will this get better?  Will it get worse?  Can you make it go away?”  This, usually in reference to some unpleasant chronic condition like asthma or psoriasis.  My answer to them was always the same:

My Magic Wand is in the shop with my Crystal Ball.”

This usually provoked a crestfallen look.  But I do not lie, I do not dissemble.  I tell the truth even when it is not what anyone wants to hear:

“Your child has leukemia.”

“Your child has meningitis (because you staunchly refused to give him the vaccination against that--but I would never say that.  They will either figure it out or not, but I will not increase the suffering of an already stricken parent.)”

“Although we did everything in our power, we were not able to save your child.”  That was the worst, the one I dreaded the most.  Where there is life, there is hope, is a true statement.  There are conditions which are dangerous, which are usually fatal, but where there is life, there is hope.

But the outcome, in the end, is not in my hands and I cannot foresee the future: my magic wand is in the shop with my crystal ball.

And now that I am the patient, I juggle these things.  Some things about my diseases can be predicted, and some can’t.  I think sometimes the most distressing part of having a disease is the uncertainty of how it will turn out.

Take Ebola, for instance.  The media has whipped the fear-and-paranoia quotient to the moon.  People are starting to fear each other on the streets.  There is talk of people wearing masks in public places, even though it has been proven that in order to pass the virus via the respiratory route, like a sneeze or a cough, someone would have to be so sick that they would be on life support anyway, not likely to be in the subway station or the mall.

Will the virus take hold in other nations, or will it peter out the way Bird Flu did, the way the previous Ebola outbreak did?

Sorry folks, my magic wand is in the shop with my crystal ball.

I am fortunate to live in two countries where one is relatively free to chose one’s own doctors, for many things, anyway, if one’s health plan permits.  If I don’t like my doctor, I simply fire them and get another one.

Very fortunately, my shrink in America, whom I have been in a cordial therapeutic relationship with on and off since 2001, is a funny, pragmatic man, who is just as likely to say “I don’t know” as he is to say “Hello, how are you?”  –which he says in a jovial yet businesslike manner, because he REALLY wants to know how you are.

Thirty minutes later I leave his office both confident and perplexed, which is the way he means for me to feel.  I am not sure our plan of treatment will work.  Neither is he.  His magic wand is in the shop with his crystal ball.

He must be in cahoots with my therapist, whose office is just the other side of his wall.  I give her a hard time, saying, “I could do your job right now.  Right now!  All I would have to do is rotate the following exclamations:  “Really?  No!  You HAVE to be kidding. [silence]”  She did not quite find that funny, but I did and that’s what’s important, especially if your DSM diagnosis was changed, without your permission, from Asperger Syndrome to Autistic Spectrum Disorder NOS.

But in reality she is a really good therapist, because she does indeed give me both space and support, and cognitive feedback, which I truly appreciate.

She DOES have a magic wand in her office, but it’s one of those fake ones, you know what I mean, with some kind of thick fluid and glitter than flutters down through it when you upend it.  But crystal ball, no, she leaves that part up to me.

My family doc in Israel is a one-of-a-kind gem.  He listens to me; he is open-minded yet erudite, and he most certainly owns neither magic wand nor crystal ball, and if he did he would have to lock them away from his kids.

Now.  I want you to know that luck played very little part in my finding my Medical Knights and Ladies.  I fired many a therapist, and several psychiatrists, before I happened upon the ones I have.

The position of Primary Care Physician in America is still open.

My psychiatrist in Israel, bless his heart, had a severe psychotic episode and had to be hospitalized, and I don’t think he’s practicing anymore.  I hope not.

Far be it from me to be anti a mentally ill psychiatrist; my shrink here has Major Depressive Disorder, and he knows how it hurts.

But my Israeli shrink started showing signs of paranoid psychosis while I was in his office, which was in a basement room with no windows and you had to be buzzed both in AND out.  Oh dear.  Nothing short of Magic Wand was going to help him, poor man.  He was kind enough to renew my prescriptions for three months, giving me time to find out there wasn’t anyone else on my health plan who speaks English.

All of this is to say:  We just don’t know.  We don’t know what will happen to us in the next moment, let alone days, weeks, months, or years.

I was in a traffic jam going up a steep hill on a two-lane road once.  When traffic finally got moving it became clear that a huge tree, its roots sodden with the torrential Monsoon rains, had fallen atop a Jeep, crushing both it and its occupant.  She died instantly.

After watching my father wither slowly away over years, months, weeks, days, and moments, it was hammered home to me: I don’t have a crystal ball, and I certainly don’t have a magic wand.  But I want that lady’s tree-falling-on-vehicle sudden death.  I don’t want to fade slowly into more and more and more pain, up till the very last breath.  If only I could have that crystal ball, to see my death, and that magic wand to change it, if it isn’t one I can live with.

Breast Cancer Behind Bars by Sue Allen

This post opened my eyes and my heart to a horror that I didn’t know existed, and that no one should ever have to endure. Please reblog!

Ruth Jacobs

Guest post by Sue Allen

Photo credit: USAG Vicenza, Flickr Photo credit: USAG Vicenza, Flickr

It’s October, Breast Cancer Awareness Month. The world is pink. We race for the cure. We stand up to cancer. We support our loved ones battling or surviving the disease, but there is one population we never mention: women with breast cancer behind bars.

Imagine the feel of shackles on your ankles. Hard, cold steel does just what it’s supposed to do. It cuts into your ankles and restricts your movements to baby steps. Even when you are very careful, you wind up with blisters or ankles rubbed raw. The weight alone drags you down.

Now imagine handcuffs. They too are designed to restrict and they can chaff and cut, especially if the guard who cuffs you is having a bad day. His bad day becomes yours.

It’s two o’clock in the morning and the halls of the jail are…

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One thing you don’t know about me (yet)

Dearest Readers, every once in a while I get gifted with an Award.  These usually require one to do a series of tasks which, to be perfectly honest, I am not capable of doing.  Generally I thank the bestower of the Award and tell her I can’t do it, but sometimes I get ashamed and don’t say anything, which of course makes me feel even more ashamed.  Sigh.

There is a bright side: most of these awards require that you disclose 10 or so things about yourself that nobody in the Blogosphere could know.  Really?  I thought everybody knew everybody else quite intimately, after a few years of blogging together.  What a wonderful community we have!  But OK, I will concede that there are things that not everybody knows about ME.

For instance, I bet nobody knows I’ve had four (4) rabies shots.  Yep, I have, and I got them because I was attacked by a crazy dog while taking a stroll through a tiny village, while I was sojourning in India.  The nasty thing took a 3 cm x 6 cm chunk out of my right thigh.  It turned out to be a good thing it was my right thigh, as will be explained later.

Upon returning from my rambles I cleaned the wound thoroughly and picked up the phone.  I had had the good fortune to pick a retreat very near to the Louis Pasteur Institute, where they do research on rabies and how to prevent people from reliably dying of it.  Did you know that over 30,000, that’s thirty thousand, people  in India die of rabies every year?

So I called the Louis Pasteur Institute and told receptionist that I had been bitten by a crazy dog, and what should I do?  First the woman asked me if it was a street dog or a village dog.  Village dog.  Definitely has an owner?  Yes, definitely: she came out of her house and laughed at the dog biting me.  Definitely a village dog with an owner.  I can tell the quarantine officer exactly which dog it was.

We don’t do that, says the receptionist (probably a Nobel Prize winner, the place is terribly understaffed).  First of all, impossible to do, so many dogs.  Secondly, no money for that.  (She asks a few more questions about the bite, to determine the proper treatment.)

Well, she says, definitely you need the vaccine, but you do not need the immune globulin.

That was what I wanted to hear.  The immune globulin keeps the poison from spreading, but has to be injected at close intervals around the border of the wound.  They would have had to etherize me to get that done.

So all I needed was the four shots of vaccine.  I had a choice: I could either come down to the Institute and stand in a line for four or more hours to get the vaccine for free; or, if I had the means, I could go into any pharmacy and buy the vaccine.

I was shocked.  Pharmacies carrying rabies vaccine for home injection?  I kept on having to focus on the landscape around me and repeat the mantra “You’re in India!  You’re in India!”  Same in Israel:  “You’re in Israel!  You’re in Israel!”

Since I happened to be a patient in an Ayurvedic hospital, the cook was sent (don’t ask me why they sent the cook; this is India!) to the pharmacy carrying a good chunk of my rupees, and returned with four lovely sealed vials of the vaccine, chilled and not out of date.

As I went to give myself the first injection,  I yelled “OUCH” and realized what a good thing it was that the dog wound was on the right.

You see, I had broken my wrist the day before.  That’s right.  I broke my wrist on Saturday, and was bitten by a possibly rabid dog on Sunday, all while getting my health back at a lovely retreat in the Nilgiri hills in Tamil Nadu, South India.  That is another story, for another day.

It was much easier to soak and clean the bite wound with my left hand, than it would have been with my right, because of the location of the bite on my thigh.

But back to the rabies vaccine.

Since I couldn’t self-administer an injection with my right arm, which was broken, and my left hand is useless for anything that requires strength, because it is partially fused due to an argument with an Appaloosa horse (another time), I had to recruit someone else to do it for me.

The most logical “someone” was my Ayurvedic doctor.  I called upon him and he widened his eyes and said he’d never given an injection in his life.  What, says I, aren’t you a physician?  An Ayurvedic physician, he returns.  Ayurveda does not have anything to do with injections.

Well, says I, you are going to learn.

In my cottage I had all the necessary items: alcohol, vials, syringes (you can buy those in any pharmacy in India), cotton, plasters, orange.

Orange?  Yes, this is how we learn to give injections.  An orange has a somewhat similar feel to it, when you stick a needle in it, as human flesh.  How many of you (nurses and doctors excluded) knew that little tidbit?

After he mastered jabbing the orange, it came time to jab me.  His face went pale and he broke out in a sweat.

“Libi, I think I am going to faint.”  He always called me Libi because I use my Hebrew name, Liebe or Lieba, when I am not in the States.

“No you’re not,” I said firmly.  “Get ahold of yourself.  Drink some water.  And get this over with, please, Doctor-Ji.”

He took a couple of deep breaths and grabbed hold of the syringe, stuck it in my arm way too far (I hoped he would not hit bone), and squeezed the vaccine in.  Hmm, wonder if the vaccine will work that way.  Oh well, if I die of rabies then I won’t have to suffer in this life any more.  I thanked him and he apologized several million times before he left.  Such a sweet sweet soul.  I hope I see him again before too long.

So I had two more shots in India, and another upon return to Israel.  Blood tests showed that I am now immune to rabies.  So come on, all you rabid bats, raccoons, possums, coyotes, jackals, wolverines and wildebeests, let’s rumble!!!!!

No, I didn’t mean that, not really.

So now you know the story of the rabies shots, and why I had them.  Perhaps I will tell you about how I broke my arm, the day before the dog bit me.  After the fact, I find it quite amusing, even though it has left me with some measure of disability.  But that’s for next time.

Tell Congress to Decriminalize Mental Illness

Please read, sign, and SHARE!!!! This is the direction we need to be traveling in: tell our government to STOP TREATING MENTALLY ILL PEOPLE IN CRISIS LIKE CRIMINALS! Every day we read in the news about somebody who is disoriented or in distress from a mental illness, being shot, beaten, Tazered, jailed….in fact, one of my recurring nightmares has to do with being arrested and thrown in jail without my service dog or my meds. What would I do? I would curl up in a little ball in the farthest corner I could find….and when I was found by the guards I would be screamed at, ridiculed, dragged out of my hiding place, roughed up, possibly beaten (because in jail, I have no rights or protections) and possibly die from the abuses, and if I didn’t die while in there I would most likely die soon after release. That’s what jailing a mentally ill person can do, and does do, on an unfortunately regular basis. So thank you to Rob for posting this, and please, friends, sign and pass it forward. Let me know if the link doesn’t work and I’ll fix it. –Laura

So That I Not Forget

A dear friend of mine who holds down a spot for me in Jerusalem gave me this advice today: write down your memories of your last years, months, days and hours with your dad, because these memories fade quickly, and you don’t want to lose them.

I moved from Jerusalem to my parents’ property in 2011, in order to ride herd on the situation with my dad.  He had had several bad falls already by then, and flying back and forth from Israel every time he got a concussion was eating up my savings and causing me way too much stress.  So I packed up and moved here.

Dad was still pretty lucid then, but showing signs of dementia, and his physical body was falling apart piece by piece because of the same degenerative joint disease and degenerative disc disease that he passed on to me (thanks, Dad).  It was getting so that he couldn’t do much for himself anymore, between the cognitive decline and the physical disability.

We have always had what I can only call a platonic love relationship; certainly a father-and-daughter love relationship, but something more–a collegiality, a mutual admiration, and a non-sexual transcendent enduring love free of any vestige of pettiness or jealousy.

In the years since I have been here, our relationship was forged even stronger thanks to my mother’s need to have time on her own, a healthy thing that provided my dad and I with ten or so uninterrupted hours every week to review the events of our lives and our life together, to share our meaningful and downright fun times, and our regrets at not having spent more time together.

We also had the blessed chance to talk about how we felt about each other, the feelings and the hurts and the wishes.

As he moved toward his death, we moved deeper into the dark side of his relationship with my mother, who has always had a short temper, no patience, and no particular respect for much of anything.  He had always kept her under control by means of fear–whenever she (or, rarely, I) got out of control he would seem to triple in size, and bear-like, roar his displeasure.  My mother was terrified of these “Hulk” episodes, and the fear of provoking one kept her screaming fits in check, most of the time.

But as he became incapable of terrorizing her, she pulled out all the stops and reveled in her newfound power over him.  I won’t go into detail, since this is an essay about him and not her, but I mention it only to say that he often poured out his anger and feelings of helplessness during our ten hours a week.

During his various stints in the nursing home in his last months, I sat with him many hours a day.  Often, we just held hands, since his brain was further damaged by head injuries sustained in various falls.  And until he lost the faculty of speech, in the last weeks, we processed things that we cherished, things we wished we had done while we had the chance, and things we had done or experienced that we wished hadn’t happened.

We held hands and kissed our dry pecks said “I love you” a million times.  I am so glad we did that.  It’s bitter-sweet now, and perhaps will always be, but at least I have the comfort of knowing that we did not hold back out of artificial formality.

Two nights before he died I was restless, could not sleep until four in the morning, when I fell into a dark slumber from which I awoke with a feeling of urgency.  I dressed quickly and drove to the nursing home.  He was lying in the “quiet room” where they put people who are about to die.

The previous day, he hadn’t known me.  Even though I knew this would likely happen at some point, it hit me like a cannon ball in the gut.  I lost it.  Hot tears choked me, I fell off my feet into a wardrobe which came close to falling on me, and I didn’t care.  I slid to the floor sobbing.  My mother wanted me to get control of myself.  I ignored her.  After some time I sobbed myself out, and asked her to go get me a latte, which gave me some time to just look at my father, who was now asleep, and remind myself that it wouldn’t be long.

It wasn’t.

The following evening I packed up my “24 hour kit” with my jammies, toothbrush, meds, and what-all, drove to the nursing home, and took over the other bed in his room.  He had his eyes open, and they seemed to be clear and not hazed over like they had been the last few days.

“Hi Dad,” I said tenuously.  I didn’t know what I would do if he didn’t recognize me this time.

“Hi Laur,” he said weakly.  I breathed out.

“I love you, Dad,” I wept.

“I love you, too, Laur.  I really, really, really love you.”  He had hold of both my hands, and I stood there, physically hurting from the odd position but with heart full of love.  I stood there till his hands relaxed and his eyelids drooped, exhausted.  I extricated my hands and, taking only minimal meds so that I could wake at any sound, lay down on the spare hospital bed to rest.

His breathing became more difficult, and he began to cough.  The coughing was followed by the gurgle of fluid.  I called the hospice nurse, and she ordered a cocktail of morphine, atropine (to dry up secretions), and Ativan.  This helped a lot.  It was ordered for every two hours as needed, and we needed it.

I must have fallen asleep, because at 4 am I was awakened by a high-pitched, primal, animal scream.  I rushed to his bed and found him unconscious, breathing deeply for four or five breaths, followed by 25 seconds of no breathing at all.  Cheyne-Stokes respiration: the breathing pattern that precedes death.  I called the hospice nurse again.

She arrived fifteen minutes later.  Yes, she said: death was imminent.  It could be minutes, hours, even days–but it would be here soon.  I cried, but she did not offer a hug.

Half an hour later, his breathing pattern changed to a regular rhythm, but very rapid.  The nurse took his pulse oximetry: 78.  Normal is in the high 90’s.  We knew it wouldn’t be long.  I called my mother, and she appeared in record time.  She must have flown over the mountain roads.

The moment before he left, his face contorted as if making a huge effort.  It seemed to me as if he had to consciously make that leap into the unknown.  And two shuddering breaths later, he breathed his last.

“His spirit is already gone,” mused my mother, doubtless trying to placate me–knowing how strongly I feel about keeping the Jewish burial practices, and not desecrating the body by burning it–“no more suffering, my love, no more suffering,” addressed to the lifeless shell on the nursing home bed.

Yes, he did suffer, mightily.  And as always, he was my teacher, my guru, in teaching me how to suffer.  He taught me how to live, how to suffer, how to die.

Tzeitcha be’shalom, Dad.  Have a safe journey.

Blessed Is The Righteous Judge

Baruch Dayan ha’Emet.

His already cold white hand slithered through my soapy gloves like a live fish as I tried to wash the fingers: blue sausages strange to me, unlike the skillful fingers that twirled and carved and painted in an epoch now seeming so long ago.

“Those hands, those hands,” my mother murmured over my shoulder.  She had volunteered to wash his body, a last act of kindness, but gave up when she saw that he was really dead.

“His fingers are turning blue,” she observed, almost casually.  I wanted to back-hand her, but instead interlaced my fingers with the cold dead ones in order to wash his arm and chest.  Just a couple of days ago we had interlaced our warm fingers just so, when he first lost the ability to talk.

“Look, his chest has hardly any hair left on it,” chirped the grisly bird at my shoulder.

How long had it been since she looked at his once bear-like chest, black with thick curly hair?  Probably when he ceased to be a “man” to her, which she had had no compunctions about trumpeting in that booming voice of hers, at her famous dinner parties, with him sitting right there shrinking into himself, mortified, unable to defend himself.

I concentrated on rinsing off the soap with clean wet washcloths, and tried to close his mouth, which had fallen open some weeks ago, making speech even more difficult for him; and now it seemed that it had stuck that way, and I couldn’t get it to stay shut.  I could not stand to let his gullet stand open to the public like that, so I called for some gauze and placed a carefully folded square behind his teeth.  It looked odd, but seemed better than the gaping maw.

The undertaker showed up before I had a chance to wash his face, and suddenly the hospice nurse became all business: a stark contrast to the all-compassion face she had on before he died.  Now it was just the routine, slide the limp item over from the hospital bed to the undertaker’s stretcher and strap it on.

His elbow was caught up in the strap, and pinched horribly; it hurt me to see that already he was treated like a piece of meat, only not so carefully, having no intrinsic value.  At the very least it was disrespectful.  I bounded forward and started to pull his arm out, and was intercepted by the undertaker, who did it for me but was visibly miffed.  Fuck him.

As they took him away the man in black explained to my mother that they would not be taking him “over the mountain” to Johnson City, the nearest crematorium, until they had assembled “a few” (to make it worth the trip, I suppose), so it would not be the next day or perhaps the next.  Jews are normally buried within 24 hours of death, but since he was to be cremated, what’s the difference?  All of our customs were going up in smoke anyway, so why not that one too?

My mother won that round.  It was what he wanted, it’s in his will, they are not Orthodox, he did not want to be eaten by worms/beetles/what-have-you, and We Believe In Cremation.

Jews don’t cremate.  We believe that the soul needs the body as a kind of GPS cache, so it knows where it came from, at least in the month after death after which it ascends to its Heavenly Home.

And we believe that a part of the soul remains with the body, and will return to Jerusalem when the Messiah comes.

Burning the body deprives the soul of its orientation.  It has no place to rest in those vital thirty days, and it can get lost in the vast spiritual realms.

Not only that, but our enemies shoved us into ovens by the millions.  Do we really want to commemorate that by burning our dead?

I explained to her all these things.  She waxed romantic telling me how they had dreamed of the places where they would spread their ashes.

Where?  I asked.

Oh, um, you know, all those places……

The animal graveyard down at the bottom of the garden where all the pets are buried?  I volunteered.

Oh yes!  She brightened.  And maybe plant a tree, and sprinkle his ashes on it….

Bullshit.

Culture is defined by rites-of-passage and by lifeways: food, weddings, and the rituals surrounding death.  Over and over in the Torah, we are commanded not to take on the customs of the surrounding nations.  We do not share their food, lest our children intermarry and take on the customs of foreigners.

Jews keep Kosher, have special wedding rituals, and have very specific funeral procedures.  None of these involve desecrating the body, living or dead.

For those of you whose culture prescribes or allows cremation, I do not write this to denigrate or offend you, for those are your customs and for you they are good.

For us, deviation from these customs means assimilation, and assimilation means the death of our living culture.

And in order to live properly, we must die and be properly buried.

Baruch Dayan ha’Emet.  Blessed Be The Righteous Judge.

Do Not Go Gentle

My father lies in the “quiet room” of the nursing home, where they bring residents who are expected to die shortly.  He is anything but quiet, crying out in voices I have never heard before, making macabre gruntings that recall hiccups but are not, waving his crippled arms–well, his right one anyway, since his left got paralyzed in the recent fall that accelerated his previously glacier-like move toward death–I am reminded constantly, mantra-like, of Dylan Thomas’ painful ode to his father’s dying.

Do not go gentle into that good night,

Old age should burn and rave at close of day:

Rage, rage against the dying of the light.

Though wise men at their end know dark is right,

Because their words had forked no lightning they

Do not go gentle into that good night.

Good men, the last wave by, crying how bright

Their frail deeds might have danced in a green bay,

Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,

And learn, too late, they grieved it on its way,

Do not go gentle into that good night.

Grave men, near death, who see with blinding sight

Blind eyes could blaze like meteors and be gay,

Rage, rage against the dying of the light.

And you, my father, there on the sad height,

Curse, bless me now with your fierce tears I pray,

Do not go gentle into that good night.

Rage, rage against the dying of the light.

–Dylan Thomas