Antiepileptic Drug Suspected of Causing Psychosis

http://m.brain.oxfordjournals.org/content/early/2016/08/07/brain.aww196

There has been much discussion in the bipolar blogging community regarding the pros and cons of different medications in our treatment regimens.  We wonder whether our symptoms are caused by our brains…or maybe, and this terrifies me…from the drugs we take to pacify our unruly grey matter.

The debate has largely focused on the role of antipsychotics.  Many people find their bipolar symptoms are not controlled by certain drugs: but when they try to discontinue, their symptoms rebound, or they even develop symptoms they didn’t have before, like auditory or other sensory hallucinations, tremors, and so on.

I had been skeptical of the extreme descriptions I’ve been reading, of people literally crippled by psychotic symptoms after even a very slow wean from certain drugs.  After all, how could antipsychotics CAUSE psychosis…could it be, thought I, that these people were simply experiencing a resurgence of their own “native” psychosis upon withdrawal of the “anti”?

This study, which focuses on psychosis caused by, or by withdrawing from, certain antiepileptic drugs, has literally changed my mind.  I’m now thinking about the way the brain is able to change the way it functions in its environment.  We bathe it in a substance; it learns to use and depend upon that substance for everyday function.

Sometimes, in the presence of a substance that is supposed to do one thing, our brain rebels and does something else.

This might explain why a person with temporal lobe epilepsy, as represented in the article, given a certain antiepileptic drug, might go ahead and have sensory hallucinations. 

I’m not going to stop taking my lamotrigine (an antiepileptic), because it really does help me feel better.  But this article did give me pause, since I also have temporal lobe epilepsy that causes sensory hallucinations.

Jeekers crow, I sure don’t want to have my days and nights haunted by the smell of baked goods burning in the oven, which is my main sensory hallucination.  It’s damned hard to sleep when your brain is tugging at you yelling “Get up, asshole, and take those cinnamon buns out of the oven before they’re ruined and the house burns down!”  Never mind that I don’t eat baked goods and don’t even have a house, much less an oven.  Stupid brain just goes on and on. 

Combine that with the constant intrusive music that isn’t there, and the bouts of disabling paranoia…I’ll take my chances with my  L&L cocktail (lithium and lamotrigine).

Just not that other stuff, which you will find in the linked article.  I encourage you to read it for yourself, and please do comment here!  I have some private thoughts, which I’m sure will spill over into the comments somewhere.  But I want to hear what all y’all are thinking about these critical issues of what we are putting into our nervous systems.

Tired Puppy

image

We had a big day today and both of us are beat.  However, if you look at the above photo you will see two squiggly lines.  The red one on the right points to Atina’s “squirrel.”  She has to have it in order to sleep.

The blue line on the left points to my foot.  She is using it for a pillow.  This means that I cannot move, or else I will wake up Sleeping Beauty and then what would happen?

What I want to know is why I get all excited about some new Bipolar management strategy that’s working, and immediately get rid of one of my drugs.  I do that frequently, and frequently pay the price.

For instance, I just started Clonidine for my blood pressure, and it has the side effect of relaxation.  I was getting over-sedated from the benzos I take plus the Clonidine, so I decided to start weaning on the benzos because I hate them anyway.

So after a couple of nights of half doses, last night I skipped the lorazepam entirely.

All well and good, I fell asleep just fine.  But it turns out the Clonidine has a very short duration of action, so I found myself irritability awake and looking for someone to kill at 4:30 in the morning.  Well, the only person I found at that time of the a.m. was me, so I lay in bed till it got light, and then I remembered that someone did me the favor of stealing all my camp furniture yesterday.  Kill!  Kill!!  But I had to wait till the office opened, so I guzzled coffee and planned my angle of attack.

It didn’t work any better than the last time I got robbed in that particular campground, which unfortunately has many advantages, which is why I stay there a lot. 

Last time, someone stole my one good pair of chinos and six pairs of blue Smartwool socks, only a couple of years old.  Fuck, fuck, fuck.  That was the find of a lifetime, Smartwool socks in the most lovely shade of blue.  I guess somebody else thought that too.

I told the incredibly rude cunt bitch fuckhead office person about it, and she just sneered at me, so I asked to see the manager, who was very nice and promised to look into it for me but I doubt she will.

I don’t know why, but the office staff all treat me like I have leprosy even though I’ve been paying to stay there intermittently since February.  I stay there when it’s really cold so I can plug in my little electric heater instead of using the propane furnace, which makes these unholy clicking noises all night.  I don’t think I do anything weirder than any of the other weird campers.  I don’t even allow myself to go around having a running conversation with myself like I normally do.  I think they’re all afraid of my dog, who wouldn’t even bite them unless they threatened me, which is one of the reasons I have her.  The other reason is that she’s sweet, sweet, sweet.  Maybe I’m creepy without knowing it.  Oh well, I’m paying them, and all they have to do is take my money, so I get to be myself.  But I miss my camp furniture and socks.

Tonight I’m in a way over my head expensive and chic campground that is far too near Sedona, which is why.  That’s OK though, because tomorrow I’m off to the Mogollon Rim.  I’ll explain more about that later.  I can’t look down to write anymore tonight.  My neck is killing me. 

How Stigma Compromises My Medical Care

I don’t know what to do.

I can bet that most of you will say, “Just be yourself, Laura.  Fuck ’em if they can’t relate to you as the awesome human being you are.”

Well, yeah.  I appreciate that.

However.

I have this service dog, see, and she’s neither little nor cute.  Well, she’s cute to me, but a 75 pound Belgian Malinois is automatically not cute to most people, especially the uptight assholes that tend to go into “the medical field” these days.  Even my therapist does not think she’s cute.  Even when Atina climbed into her lap and gave her kisses, because she could see that the dear lady was clearly in distress, it did not help.  My poor therapist could do nothing except beg me to get the monster off of her, which I did, and Atina reluctantly obeyed but was still of the opinion that the lady needed her attention.

On the flip side, if Atina perceives that someone is potentially a threat to me, she stations herself sideways in front of me, giving the unsafe party the hard-eye, which is dog language for “come over here and make my day.”

This is why I have a Service Dog:

I have a perfect storm of Asperger Syndrome, PTSD, and Bipolar illness.  My judgement about people is shot to hell.  I lost it on April 22, 1970, the very first Earth Day, when I was drugged, dragged into a dark basement, and brutally robbed of my virginity.  That, and the prolonged months and years of running from one frying pan into another fire, robbed me of my ability to read people’s intentions.  I think it’s because I simply dissociate every time I have to interact with other people.  So now that I’m on the far side of sixty and no longer give a shit, I’ve stopped making myself do painful things, and aside from the inconveniences of not having friends, family, or a partner when I have a medical emergency, I feel much better.

Have you noticed that sometimes your fridge, washing machine, microwave, computer, and automobile all crash at the same time?  So now you have to get a ride to the Big Box store, to the bank to get quarters for the laundromat, and a ride back and forth to the laundromat, to the convenience store for ice until the new fridge comes, and while you’re on the phone with Tech Support your phone is giving your ear a second degree burn and probably giving you brain cancer as well….

This is what I call a Wear Cycle.  When everything wears out at once.  It generally falls out when you’re between jobs, or just before those gift-giving occasions, or your wedding.

So as some of you are aware, I am in the throes of a Wear Cycle of the most annoying sort.  My body is falling apart.  I thought it just needed a tune-up and maybe a brake job, but it turns out to be the transmission, the universal joints, the head gasket; and every time they fix one thing, another one turns up bad.

The result is a seemingly endless procession of doctors, PAs, Nurse Practitioners, lab techs, snotty Front Office People, sadistic MRI techs who put me in Positions Of Stress for upwards of twenty minutes while further damaging my hearing with the various hammerings and clangings of that infernal magnetic tube, being told that I need surgery for this, surgery for that, and they all worry about my blood pressure.  Surely not!

You must understand that my relationship with The Medical Field is a mine field.  The minute I leave my van in the parking lot of the doctors’ building, the hospital, the lab, I dissociate.  I am terrified.

But you’re a doctor, you say.  How could you not be comfortable in this oh-so-familiar milieu?

That’s just it.  I’m all too familiar with it.  I know exactly what goes on behind the scenes, and it disgusted me while I was in it, and it terrifies me now.

Because I am…one of those patients.

You know, the aging female with so many complaints it throws your schedule off, and she’s slight dotty, and might be amusing if you weren’t running so far behind, and of course–of course, she has to be a doctor, at least she says she is, and she does know the lingo…and she has Medicare and doesn’t seem to have a job, so she must be disabled, but for what?  She’s not saying, and if you ask, she’ll say something vague.

I know this, because I’ve been on their side of the white coat.

So imagine what the reaction would be if they walked into the exam room and there I was with my Service Wolf Dog.

The entire visit would revolve around whether the person who Works In The Medical Field was comfortable with the Doggess, and whether she thought they were Safe.

And of course she would pick up on my instant dissociation because I dissociate whenever I run into One Of Those People, because of the abuse I suffered when I was working In The Medical Field, and the abuse I have suffered as a patient dependent upon these people’s power.

And the shame of being disabled, which is, according to the ancient tenets of The Medical Field, weak; and even worse, crazy.

I just rediscovered a former mentor who was hugely influential to me when I was a medical student.  She was my supervisor in the Public Health Clinic.  We became good friends, and she helped me crystallize my medical practice world view, which is based on compassion and empowerment of the patient to take charge of her own health and well-being.

It turns out that this amazing woman had a terrible crisis, which lead to a suicide attempt.

Rather than supporting her and helping her to rebuild her life, the medical establishment brought criminal charges against her for lowering the esteem of the medical profession in the eyes of the public.

They drove her out of the profession.  It didn’t matter to them that this heinous act might push her over that very precipice she had dragged herself back from.

It didn’t matter that they were persecuting one of the finest physicians on the face of the earth, for the crime of being human.

All that mattered was that she had “failed” to complete her suicide.  If she had died, she would have been another tragic physician suicide; but since she managed to survive, she was pronounced a disgrace to the profession.

Fortunately she is a strong and resourceful woman.  She cleaned houses in order to feed her children.  She struggled her way back onto her feet, and reinvented herself.  Blessed be.

So I know very well what the result would be, even if the Doggess didn’t bite the Assistant (you hardly ever get to see The Doctor anymore):  “Did you get a load of that lady with the dog?  What a crock!”

Yes, fuck ’em.  They’ve no right, legally or otherwise, to prevent me from having my dog with me.  She’s Durable Medical Equipment, just like a wheelchair.

The only thing is…being mentally ill automatically discredits anything I say.  I’ve tried it both ways.  And unfortunately, whenever I’m honest and disclose that I have DSM diagnoses, I get my case dismissed.  No contest.  No service.  Goodbye, and put some ice on that.  It will feel better in seven to ten days.  No need for follow-up.

In awful contrast, when I have withheld my diagnoses, it’s all sympathy and MRIs.

Hell, I even got a few tramadol tablets for my torn shoulder, when I begged the doctor because my left wrist is in a brace awaiting surgery and my right shoulder is so painful that I can’t even get out of bed without fainting if I forget and try to push myself up with my right arm.  (How do I get out of bed?  By wriggling on my tummy until my feet touch the floor.)

You think she would have given me that prescription for thirty, no refills, if she knew that I’m bipolar?

Nope.  Bipolar people are categorically drug seekers.  Even though I asked for tramadol and not Percocet.  Drug seeker, no way.

I’m stuck.

I’m terrified of those places, and I need my dog.  But the presence of my dog would set off such alarms in the mind of The Medical Field Person that my actual medical issues would be eclipsed by Prejudice.  Stigma.

If I showed up in an electric wheelchair, they would be all ears.

But a crazy person with a dog?

Cook County Jail Mental Health Center

In the United States, “budget cuts” have eliminated most of the community mental health services that up until the mid 1990’s served a vast number of uninsured, unemployed, homeless, drug and/or alcohol dependent, and otherwise disenfranchised people.

Where once these people in need of services were able to access a minimal level of care including evaluations for mental illness, medications, group and individual therapy, social work support for helping them get Medicaid, job training and placement, substance abuse treatment, and connection with community support services such as AA and NA, now all of these services have largely been shut down. 

Now, without access to mental health services, people who were formerly able to access care are left on their own.  What happens to them?

Homelessness, drug addiction, crime related to survival on the street with mental illness.

Who assumes their care?

Well, that depends on which prison they end up in, if they don’t die at the hands of “law enforcement,” other individuals, suicide, overdose, freezing to death, or other hazards of street life.

If they’re fortunate enough to live in Chicago, where Mayor Rahm Emanuel in his “wisdom” shut down six of the city’s twelve community mental health centers, they go to Cook County Jail.

Please take the time to watch and **share** the video below, which documents the unique program for mentally ill inmates initiated by Cook County Jail, which now serves as Chicago’s main “Mental Health Center.”

So Long, Pluto

By one of those curious twists of the state of time, space, and matter, it seemed good in my eyes on Thursday night to seek the reliable shelter of a State Park, in which to interrupt my trajectory while hurtling across the awe-inspiring hugeness of the State of Texas.
_________________________

A Texan went to visit Ireland.

He saw an Irish farmer out working in his potato field, got out of his rented Cadillac and approached the fellow, and hollered:

(Texas accent): Say, pal, is this your land?

The Irishman cuts the engine on his ancient tractor, removes his battered hat, scratches his balding red head, mops his pate with his tatty handkerchief, jams his hat back on.

(Irish accent, with pride):  Sure and it is, Mester.  Been in my family for a hunnerd years. (Beams, gap-toothed, at the Texan, who is now standing in the dirt road in his cowboy boots, dove-grey Western suit, string tie, rocking with his thumbs hooked over his tooled leather belt with its garish silver buckle.  Door of Cadillac stands open.)

Texan:  Why, that’s mighty fine, mighty fine.  How much land have you got, if you don’t mind my askin’ ? (Chews a toothpick)

Irishman, with pride:  No, I don’t mind a wee bit, sence you’re askin’.  You see that tree stump off there in the distance?  Why, our land goes all the way from that stump, back aways past the house and farmyard, barns, horse pasture, to that stoon fence, ye can just barely see it from here.  (Scratches head again.)

Texan:  I declare.  That’s a right purty leetle piece.  You know, Farmer, back in Texas where’n Ah come from, Ah kin git in mah truck an drahve from sunrise to sunset, and Ah will still be drahvin’ on mah own land.  (Air of superior self-satisfaction)

Irishman: (Shaking head sadly)  Ach!  I had a truck like that meself, once.
__________________________________

The twist of fate is made curious by a happenstance: the first Texas State Park I spied on my map happened to be full, but the sweet and adorable Mescalero Apache ranger at the park office told me that there was plenty of room at the next park down the road, which happened to be right down the road again from the famed McDonald Observatory, home of the second biggest and most scientifically unique telescope in the world.  Yowie zowie, I love space stuff!  And my knowledge base is terrible, so I got all hot and sweaty at the thought of increasing it in such a majestic way.

I scuttled down the ranchy road, reaching the park just about closing time.  Picked myself out a choice spot and settled in, nervous about the javelinas (pecaries, a nasty species of wild pig that stinks and had it in for dogs) and wild boars, that can tusk up a dog or small human faster than you can say “Old Yeller.”  We have seen a lot of their poop, fresh, in our campsite, and if they only come sniffing around of a night, that’s fine, as long as they respect the rules.

The next day I mounted Old Jenny and climbed up the twisty road to the Observatory.  They were having a program on Sun Spots, but since I regularly check the Solar Weather I wasn’t so interested in that.  I wanted Deep Space.  Wormholes, Dark Energy, you know, cool space stuff.  I wanted to see the giant telescopes, but the next available date is a couple of weeks from now and I don’t plan to be here then.  Plus it costs $115, which would be money well spent, but that’s a week’s worth of camping money, so.

But they have “Star Parties,” interpretive viewings of the heavens both aided by normal size telescopes, and with the naked eye, so that one comes away with greatly augmented knowledge of celestial bodies and visible galaxies and nebulae (one, beside the Milky Way: the Orion Nebula.  I was hoping to get a glimpse of the Horsehead Nebula, but you need a higher power telescope for that).

The McDonald Observatory is located on top of a mountain situated above the Sonoran Desert, and is one of the darkest places in the world (at night, and not a cave).  Thus, I was tremendously exited at the prospect of guided stargazing in that spectacular location.  I bought a ticket for $15 and returned to my campsite to do a bit of dog hair mitigation and await the appointed hour.

We got there early (“we,” unless otherwise noted, means my dog and I) and cooled our heels till show time.

Big tour buses pulled up.  I noted them, then blocked them out of my consciousness.

With the approach of show time, I took Atina out for a potty break and put her in the van, ignoring her rueful expression.  It’s tough being a dog.

When I entered the lobby my heart went splat on the floor, then went into a run of sinus tachycardia.  Panic attack. 

Hundreds of lovely young people wearing Texas Tech and University of Texas and Texas A&M sweatshirts milled and shouted in the lobby.

I bailed into the gift shop, which was geared toward children, with book after book after book on the constellations…fer krissake, how many books on the constellations do they need?

I perused the wall charts, the glow in the dark universes that I stuck on my erstwhile son’s ceiling, to give him something to do while he wasn’t sleeping….and noticed something odd.

There were only eight planets.

That is wrong.  There are nine.  Everyone knows there are nine planets!

Then I remembered: Pluto has been decommissioned as a planet, because it is made of frozen water and no rocks.  You have to be made of rocks to be a planet.

It’s not fair.  Other planets are made of weird shit, so why, after all this time, could they not make Pluto at least an HONORARY planet?

I bought a placemat of the Periodic Table, which has picked up a number of new elements since the last time I studied it, and bolted for my van.

The rest of the evening was devoted to doctoring my crushing panic attack.

It wasn’t merely the prospect of standing in loud lines with droves of college students.

It was the sudden realization that I, too, have been decommissioned, like Pluto, and for the same reason: lack of a solid core. 

In our last bitter conversation, my son made it clear that I am not the mother he wanted…or, in his opinion, needed.  He needed stability.  He needed a rock core, not just some object made of frozen gasses.

Pluto and I are no longer welcome in his universe.

Well.

Since I have cried all the way across the enormous state of Texas, I have very clean eyes.  It seems that tears do not simply run out.  The body just keeps making more.

And since my decommission I have had plenty of time to reflect on the universe of mistakes I have made in my life.  Mistake after mistake after mistake.

And all boiling down to what?

Well, at least I have money, for a couple more years, to pay my expenses.  That’s a plus.

See, me and Pluto just keep going around and around and around, but the end is interincluded in the beginning, so there is no getting off this particular merry-go-round.

So me and Pluto and Atina will go ’round until it all winds down and it’s time to bail out.  That’s what happens to stars before we blow up and become Something Else.

So Long, Pluto

By one of those curious twists of the state of time, space, and matter, it seemed good in my eyes on Thursday night to seek the reliable shelter of a State Park, in which to interrupt my trajectory while hurtling across the awe-inspiring hugeness of the State of Texas.
__________________________________

A Texan went to visit Ireland.

He saw an Irish farmer out working in his potato field, got out of his rented Cadillac and approached the fellow, and hollered:

(Texas accent): Say, pal, is this your land?

The Irishman cuts the engine on his ancient tractor, removes his battered hat, scratches his balding red head, mops his pate with his tatty handkerchief, jams his hat back on.

(Irish accent, with pride):  Sure and it is, Mester.  Been in my family for a hunnerd years. (Beams, gap-toothed, at the Texan, who is now standing in the dirt road in his cowboy boots, dove-grey Western suit, string tie, rocking with his thumbs hooked over his tooled leather belt with its garish silver buckle.  Door of Cadillac stands open.)

Texan:  Why, that’s mighty fine, mighty fine.  How much land have you got, if you don’t mind my askin’ ? (Chews a toothpick)

Irishman, with pride:  No, I don’t mind a wee bit, sence you’re askin’.  You see that tree stump off there in the distance?  Why, our land goes all the way from that stump, back aways past the house and farmyard, barns, horse pasture, to that stoon fence, ye can just barely see it from here.  (Scratches head again.)

Texan:  I declare.  That’s a right purty leetle piece.  You know, Farmer, back in Texas where’n Ah come from, Ah kin git in mah truck an drahve from sunrise to sunset, and Ah will still be drahvin’ on mah own land.  (Air of superior self-satisfaction)

Irishman: (Shaking head sadly)  Ach!  I had a truck like that meself, once.
__________________________________

The twist of fate is made curious by a happenstance: the first Texas State Park I spied on my map happened to be full, but the sweet and adorable Mescalero Apache ranger at the park office told me that there was plenty of room at the next park down the road, which happened to be right down the road again from the famed McDonald Observatory, home of the second biggest and most scientifically unique telescope in the world.  Yowie zowie, I love space stuff!  And my knowledge base is terrible, so I got all hot and sweaty at the thought of increasing it in such a majestic way.

I scuttled down the ranchy road, reaching the park just about closing time.  Picked myself out a choice spot and settled in, nervous about the javelinas (pecaries, a nasty species of wild pig that stinks and had it in for dogs) and wild boars, that can tusk up a dog or small human faster than you can say “Old Yeller.”  We have seen a lot of their poop, fresh, in our campsite, and if they only come sniffing around of a night, that’s fine, as long as they respect the rules.

The next day I mounted Old Jenny and climbed up the twisty road to the Observatory.  They were having a program on Sun Spots, but since I regularly check the Solar Weather I wasn’t so interested in that.  I wanted Deep Space.  Wormholes, Dark Energy, you know, cool space stuff.  I wanted to see the giant telescopes, but the next available date is a couple of weeks from now and I don’t plan to be here then.  Plus it costs $115, which would be money well spent, but that’s a week’s worth of camping money, so.

But they have “Star Parties,” interpretive viewings of the heavens both aided by normal size telescopes, and with the naked eye, so that one comes away with greatly augmented knowledge of celestial bodies and visible galaxies and nebulae (one, beside the Milky Way: the Orion Nebula.  I was hoping to get a glimpse of the Horsehead Nebula, but you need a higher power telescope for that).

The McDonald Observatory is located on top of a mountain situated above the Sonoran Desert, and is one of the darkest places in the world (at night, and not a cave).  Thus, I was tremendously exited at the prospect of guided stargazing in that spectacular location.  I bought a ticket for $15 and returned to my campsite to do a bit of dog hair mitigation and await the appointed hour.

We got there early (“we,” unless otherwise noted, means my dog and I) and cooled our heels till show time.

Big tour buses pulled up.  I noted them, then blocked them out of my consciousness.

With the approach of show time, I took Atina out for a potty break and put her in the van, ignoring her rueful expression.  It’s tough being a dog.

When I entered the lobby my heart went splat on the floor, then went into a run of sinus tachycardia.  Panic attack. 

Hundreds of lovely young people wearing Texas Tech and University of Texas and Texas A&M sweatshirts milled and shouted in the lobby.

I bailed into the gift shop, which was geared toward children, with book after book after book on the constellations…fer krissake, how many books on the constellations do they need?

I perused the wall charts, the glow in the dark universes that I stuck on my erstwhile son’s ceiling, to give him something to do while he wasn’t sleeping….and noticed something odd.

There were only eight planets.

That is wrong.  There are nine.  Everyone knows there are nine planets!

Then I remembered: Pluto has been decommissioned as a planet, because it is made of frozen water and no rocks.  You have to be made of rocks to be a planet.

It’s not fair.  Other planets are made of weird shit, so why, after all this time, could they not make Pluto at least an HONORARY planet?

I bought a placemat of the Periodic Table, which has picked up a number of new elements since the last time I studied it, and bolted for my van.

The rest of the evening was devoted to doctoring my crushing panic attack.

It wasn’t merely the prospect of standing in loud lines with droves of college students.

It was the sudden realization that I, too, have been decommissioned, like Pluto, and for the same reason: lack of a solid core. 

In our last bitter conversation, my son made it clear that I am not the mother he wanted…or, in his opinion, needed.  He needed stability.  He needed a rock core, not just some object made of frozen gasses.

Pluto and I are no longer welcome in his universe.

Well.

Since I have cried all the way across the enormous state of Texas, I have very clean eyes.  It seems that tears do not simply run out.  The body just keeps making more.

And since my decommission I have had plenty of time to reflect on the universe of mistakes I have made in my life.  Mistake after mistake after mistake.

And all boiling down to what?

Well, at least I have money, for a couple more years, to pay my expenses.  That’s a plus.

See, me and Pluto just keep going around and around and around, but the end is interincluded in the beginning, so there is no getting off this particular merry-go-round.

So me and Pluto and Atina will go ’round until it all winds down and it’s time to bail out.  That’s what happens to stars before we blow up and become Something Else.

Lost

After my 30 year old son threw me out the day after Thanksgiving, I sat with the pain until after Christmas.  I thought the pain would fade, but it only intensified.  It was eating me up from the inside out.  I thought we had a good relationship, and then this.

So I wrote him a letter, asking what I had done to cause him to do this thing.

A couple of weeks went by.  He was kind enough to send me a note saying that he wanted to take time to sit down and write me a well-thought out letter.  I waited eagerly, hoping for a positive answer.

What I received tore my heart into even smaller shreds.

He detailed grudges that he held from childhood, that I thought had been addressed during the two years of intensive family therapy at the therapeutic boarding school I sent him to as an alternative to jail after he got arrested when he was 16.  I guess that wore off.

More grudges for things I had done unintentionally, that I did not know had bothered him, or even knew anything about.

Worst of all, he disapproves of my current lifestyle, my past lifestyle, and I got the impression (or maybe her wrote it) that he believes I am irresponsible, and worries that I will run out of money (possible, since I have given so much of it to him, in one way or another).

I waited another few weeks, went through the letter with my therapist, discussed the triggers…

Being thrown out by my own son would be bad enough.  For krissake, I wasn’t drunk or abusive or anything that would merit being shown the door.  But since my mother used to do that all the time when I came to visit her, hoping once again that I would find her transformed into the Mommy that I never had, the trigger was like a hammer brought down on my head.

And his letter, so full of judgement and criticism, triggered my childhood of constant criticism by both parents.  How can I relax if I never know whether what I’m doing will be accepted or considered wrong?  How can I trust him ever again, since he holds grudges even for things I didn’t know were wrong, in his eyes?

And who the hell does he think he is, to judge his mother?  I have never abused him: the opposite.  I have struggled ever since he was born to find ways of helping him to be happy.

As one of my first boyfriend’s Irish mother said to him when he criticized her, “Don’t you judge me!  I wiped your shitty ass!”

I wrote my son another letter, explaining that we are different people with different values, and just because someone is different doesn’t mean they’re a bad person (you’d think someone would know this by the time they’re 30, but I guess not).

I also reiterated how much his behavior had hurt me, and how my current financial situation is largely due to the more than $200,000 that ate up my retirement fund, plus having to borrow another $75,000 from my parents, who amazingly mortgaged their paid-for home to save his life.  He has never thanked any of us, nor offered to pay us back even a fraction.  I have never mentioned the money thing to him before, not wanting to lay a guilt trip on him.  But since he brought it up, and since he is behaving like an entitled brat, I let him in on the secret.

I have not heard back from him yet, and I wonder how he will take these harsh realities.

I also told him something of my health issues, both physical and mental, and that since I have no one to care for me and I refuse to go into a nursing home, at some point this life will end, either naturally or, if the pain is too severe, by assistance.

I feel that I have lost him.  This too is triggering, as I had the same feeling when he was a lying, stealing, addicted teenager, running with others of the same ilk, in and out of every kind of rehab, even a stint of involuntary hospitalization that turned out to be a nightmare.

He managed to either fake his way through the programs or get himself thrown out by fighting or otherwise flagrantly breaking the rules. 

Finally his stepmother threw him out, and he ended up in a homeless shelter, where he broke the rules and I don’t remember what happened after that because I was having my own catatonic breakdown and two hospitalizations.

During those times I felt like I had lost my son, but he was still alive, which was worse than having lost him by death in some ways.

If he had died, at least I could have grieved him and kept the good memories.  But losing him alive was unremitting torture, as it is today.

Why, all of a sudden, have I become a villain?

I think I know.

Now that he’s become known in the scientific world, he’s emulating his famous scientist dad.  He’s dressing like his dad, even talking like him.

I’m sure people ask him what his mother does, and he doesn’t know what to say.

He’s not proud of me; in fact, he’s embarrassed, because I am disabled by mental illness, I don’t work, and I don’t even have a home.

He writes that he wants me to settle down and have a real bed for him to sleep in when he visits.

Funny about that: when I did have a real home with a real guest bed, he never visited.  Of course, my real home was in Israel, and although I offered to pay his fare countless times, he always had an excuse why he couldn’t come.  But he was happy to go to Hawaii with his dad.

I told my mother, who is not the greatest role model; nevertheless I told her, and she said, “Let him go.  He’s never been a part of our family anyway.” 

That hurt me even more, and made me wish I hadn’t said anything.

Thirty years ago today, I was great with this child.  I have a photo of myself in profile, naked and glistening with oil like a wrestler.  I am very short.  I looked like I had swallowed a giant watermelon.  I was so happy.

Now, I wonder whether having him was the right thing.  He has never been happy.  He screamed constantly for years.  He started seeing a child psychologist when he was three.  My ex-husband started sleeping with him when I started my internship, because otherwise he just screamed all night.  This child drove a wedge between my former husband and I.  I’ve observed, during my 20 years practicing pediatrics, that a sick child will either cement or destroy a marriage, depending on the health of that marriage to begin with.  I consider the child to be a symptom of family dysfunction.

Usually divorce will help the stricken child; in our case, that was not to be.

Anger, and more anger, has been this child’s life.  I thought he had developed coping skills and self awareness.  I was so proud.

Now I am lost in a sea of pain.

If I had known then what I know now, I believe I would not have conceived him.

Postscript

After I wrote my previous blog entry, I let my service dog Atina out to pee and putter around.

Then I felt the scream building up.

Every once in a while, the pressure inside builds and builds, and the only way I can let it out is to scream.  A lot of screams, until my throat is sore, my head is pounding, and I’m too exhausted to scream any more.

But I can’t scream when Atina is with me, in the van.  She already gets concerned when I laugh, because she thinks I’m crying and tries to cover me with her body, which is her way of comforting me.  I like it.

And if I’m in fact crying, she licks away my tears while suffocating me.  She weighs 71 pounds.

So when she was outside, the screams overcame me like a boiling kettle, again, again, again, I couldn’t stop.

Then I heard her barking and scratching frantically at the door.  I stopped screaming and opened the door.

She rushed in and threw herself on me, almost knocking me down.  We clung to each other and she gave little worried yips, stood up and licked my face, and I had to go lie down with her for a while and cuddle till we both felt better and calmed down.

It was a beautiful day, so I figured the best thing we could do was to go for a walk.  As I closed the door of the van, I looked for the scratch marks.

They were right by the door handle.  She had been trying to get the door open, to get to me!

What a precious carrot.

 

The Carrot and the Stick

My life hangs by a frayed thread.

I am a donkey who lives by the carrot and the stick.

The carrot hangs in front of me, just out of reach.  This gives me a reason to keep reaching.  It is valuable, because it means that someone else’s life depends on mine.

I had two carrots; now I only have one.  That one is my dog, Atina.  She cannot live without me, for she is sick and depends on my care to stay alive.

Actually some other benefactor could care for her, but I love her, and she gives me the only joy I have now.  So she is my carrot.

Then there is the stick that follows me, threatening to whack me if I don’t keep trudging along under my load.

The stick is the fear that there might actually be an afterlife, reincarnation, some consequence for taking my death into my own hands.

My life has always hung by this thread, and I have clung to the thread as a mountain climber clings to the fixed ropes, the lifelines that prevent the fall into the unknown, or rather, the certainty of death.

Before the doctor rescued me by cutting me out of my mother’s hostile womb, my tiny organism was flooded by the amphetamines she took to keep from gaining weight while pregnant.

My organism did not tolerate her labor.  My heart began to fail from lack of oxygen.  No doubt my attachment to her womb, my lifeline, was marginal because of the drug that caused constriction of the blood vessels.

I was “small for dates,” four pounds, and struggling to breath, so they took me away and stuck me in an incubator with plenty of oxygen.

My lungs were bad, I suffered withdrawal from the amphetamines, I was unstable, and in those days no one was allowed to touch a fragile newborn except for feeding and changing, so I sucked my thumb and watched the white forms padding on silent feet through the dim space that surrounded my plastic bubble.  This I remember clearly.

Childhood was searing pain, alien to everything, clothes tearing at my skin, terror of my mother, clinging to my father who always had somewhere to go or something to do, only my animals for companionship and love.

Teenage hopelessness, violent rape, runaway, street life, rape, rape, rape, pregnancy, abortion, alone, alone, alone.

Finally mentors, self esteem, push push push degree degree degree, marriage, baby, fell off the balance beam, paralyzing depression, no support, head of my class, medical honor society, residency, depression, mania, no support, ruptured discs, surgery, body jacket, divorce.

Son’s father refused to see him “because it was too emotionally hard” on father.  Really?  Your son cries for you every night and day.  How can you sleep at night?  How can you look at yourself in the mirror and say, “My emotional pain is more important than my five year old son’s”?

We went on, my son and I.  Life was rough, life was rocky.  He was angry, I was numb, except for the pain always there.  Work, the drug.  Work hard, work long, work better.  A nanny in place of a father.  Angry boy, angry boy.  Can you blame him?

Angrier angrier angrier.  Treatment treatment treatment.  Drugs, legal and not.  Go and live with father finally, maybe that will help.  Bribe father to take the boy.  Father likes money, I have plenty.  Used to.

Disaster.  Thrown away, street life, homeless shelter.

Mother now disabled by mental illness, bankrupt.

Son needs help, NOW!

Therapeutic boarding school, but how to pay?  Father and his family refuse to help.  I borrow money from my parents.  They get it by mortgaging their home, to save their grandson.

I leave my career behind, to help my son, no turning back after too much time away.  I am disabled, that’s who I am, new identity.  But I helped my son to save himself, so that’s who I am now, what, a sacrifice?  No, just a disabled person.  It would have happened anyway, in my downward spiral.

Now he is a big shot, finishing his Ph.D., and his father and his father’s family have taken him back, so proud.

His first scientific paper published in the world’s premiere scientific journal.  I am so proud.

But.

We “do” Thanksgiving together, he and I, and every year has been a blast.

This year, something different.

He invites me to his apartment.  Just the two of us.  Why?

Don’t you want to invite some friends who don’t have somewhere to go?  You remember, when you were a kid, we always had students over who couldn’t go home, or were Chinese, or for some reason would be alone.

No, he said.  Everyone already has a place.

I wondered.

The night before Thanksgiving I was invited, with great pomp and circumstance, to go out with he and his friends to a bar.  I was thrilled to be included.

But when I arrived, a five hour drive from where I stay, I had a migraine and felt sick, and just wanted to smoke some flower and curl up in my van with Atina, my dog.  I would feel better tomorrow.

So I said, you guys go ahead, I’m going to sleep off this migraine.

OK, he says, eager and relieved.  And ran out the door.  I’ll leave it unlocked he says, in case you need anything.

Morning late, I feel better, he’s hung over.  Coffee, cartoons on the big screen, I’m content.  He starts cooking.  Always happy when he’s cooking!

Dinner: a roast duck, fried rice, greens, cranberry sauce.

Not much to say, and it’s getting weird.  I feel a void, ghosts at the table, who are they and why don’t they come out and play?

So the pipe goes back and forth, and he is drinking more beer and more beer.  I go to bed early, he goes out with friends.  I wonder ?

Friday morning, coffee, and I am served a spoonful of leftover rice.  He gives himself a plate, not a lot, but a plate. ?

He goes to lab to feed his cells, I shower and try to get this migraine to go away.  I’m hungry.  I take a bit more duck, rice, a bit of everything.  Thanksgiving leftovers are the best.  I wish son was here to share, but I’m hungry and my head is pounding, so I eat.

He returns from lab.  I tell him I’m sorry I couldn’t wait for him, I had to eat.  He looks angry.  I feel the old ominous storm clouds.  Why?

I guess I’d better go now.

But I feel like crap, I don’t want to drive.

He’s already holding the door open for me to go out.

Um, listen, I don’t feel so well, do you think I could hang out for a while longer?

Um, sorry Mom, I need my space, he says, with irony face.

Oh, OK, I understand.

Beggar at the door, no place for you here.

What did I do?  Did I eat too much?  Am I too burned out?

I’m not successful like his father, the famous scientist, or his father’s father, the famous whatever.

I’m just a mentally ill disabled person, a failure at life, an embarrassment.

I’m skinny, I look ill, my hair is grey and frizzy, my clothes hang loose, my dog is nervous…

Can I at least use your internet to find a place to camp?

Oh sure, Mom.  Come in.  But please leave Atina in the van.

I thought he liked dogs.  Maybe now that he’s got new clothes and new furniture, he’s afraid she will…

I find a place, guess this is it, he’s holding the door….

Love you, honey….

Love you too, Mom…mechanical doll voice.  Grim.

I drive off, numb.  Can’t feel yet, I have to get there, too much traffic.

Get there, hook up, walk dog, collapse, convulsed with grief.

There goes my carrot.

Now I know that my leaving won’t make much of a dent in his life.

I stay here for him, thinking my exit would destroy him, but not so.

He has his father now, and his father’s father, and he is their prestigious prodigal son.

In some way, relief, that cord is cut, that fixed line down.

The plan has been in place for some time, yet I have held my hand because of Carrot #1.  Now Carrot #1 has shown me the door, out of his life and into ?

Carrot #2 snuggles against me as I write.  Precious baby.  But she is sick.

She may last months, or a year or a few.

When she goes, I go too.

Will I be punished?  Will I have to come back and do it over till I get suffering “right”?  Or, to quote Lewis Carroll, do we just go “poof” like a candle, when we go?

Already I am losing the use of my body.  My shoulders are too full of arthritis to throw a ball.  My left hand no longer works well enough to play my music, which has carried me through so much suffering all my life.

Something has happened to my blood vessels.  They break and bleed under my skin so that I go around with blue lumps simply from the trauma of living.

My skin comes off in sheets if I brush up against anything harder than a pillow.  The wounds take months to heal and leave hideous scars.

The cancer that I had in the 90’s once again inhabits my innards.  I hope it grows faster this time.  No, I’m not going to treat it.  That would hasten my death, and I don’t want to leave my dog.

But some days I can’t move, my bloated belly pushes down like a rock.  Other days, not so bad.  Some days only liquids, others, soup and rice.

I had this one carrot that kept the juice of life running through my broken veins.  Now that carrot is gone, eaten up by some other entity, and the sick carrot and the stick remain.

The stick doesn’t frighten me.  I can’t do anything about the stick.

My sweet Atina will drag me along until her own candle gutters and goes out, and I will follow after, poof, and at least this life will be done with.

I can only hope that the cancer takes me before I have to take myself.

That way I don’t have to worry about the stick.

 

 

A Coupla Bummers and A Miracle

Well, it was Thanksgiving in America, again.

A friend of mine calls it Shabbos Hodu.  (“Shabbos” is the Eastern European version of the Hebrew word “Shabbat,” or Sabbath).  “Hodu” is the Hebrew word for both “turkey (the bird)” and the imperative form of one of the many words for “to thank.”  Thus, “Shabbos Hodu!”

In Orthodox Judaism there is no “Thanksgiving Day,” because we formally give thanks to God at least six times a day, and sometimes more often.

The three daily prayers, which take up to an hour each, contain 19 paragraphs of blessing.  Each of these blessings opens and closes with a verse of thanks.  There is a separate blessing expressing thanks in general, and when there is a quorum of ten people, a special very beautiful paragraph is sung that describes the praises of the Angels.  There is a verse in every prayer beseeching the Creator to rebuild Jerusalem, our Holy City.

The other three “Thank you’s” are contained in the Blessing After Meals, said after any meal containing more than a certain amount of bread (the exact amount is part of Jewish Law), and a shorter version that is said after eating any non-bread product containing one of the five varieties of grain that grow in the Land of Israel: wheat, spelt, rye, oats, barley.  The long version takes me 45 minutes to say, because I say each word with concentration on its meaning.  I learned this from my teachers.

In these prayers also, the rebuilding of Jerusalem figures large.  Both sets of prayers were codified while the Hebrews were in exile in Babylon, after the Babylonian conquest had razed Jerusalem.

However, I no longer live in a Jewish community, let alone Israel; and to tell you the truth, I’m not really practicing Orthodox Judaism these days.

It was so wonderful living in our little country, being able to practice my religion in an unfettered way.  We could wear our special religious items–you know, the ones we are prohibited from bringing to the Temple Mount–right in the street, in the buses, anywhere, without people screaming epithets and other unpleasantries.

I once had a conversation with a black woman from New Orleans who had converted to Islam, married a Lebanese man, and moved with him to Saudi Arabia.  I met her in India.  She wanted to know why we Jews had to have our own country, when we could be Jewish anywhere in the world.

I was so taken aback by this question that I had to sit and think for a minute.  At last I got hold of my senses and asked her,

“Were you able to practice Islam in America?”

“Well, of course!”

“Then why did you move to Saudi Arabia?”

“Oh, because it’s an Islamic country!  Saudi Arabia enforces strict Shari’a Law, so it is the purest Islam…”

For a moment, understanding dawned in her eyes, but it faded just as quickly.  I developed something that needed my urgent attention, and left my friend wondering what went wrong.

Oh yes. I was talking about Thanksgiving in America.

Since I’m in America for the foreseeable future, I am doing some things American style, like Thanksgiving Day and gifts for Hannukah (our Festival of Lights, coming up next week).  In Israel, Hannukah is a time for celebrating miracles.  Gifts are not really a central theme.  It’s all about the light. ( More on that next week.)  The American practice of giving gifts on Hannukah seems to have arisen in order to keep Jewish children from being bummed out because of Christmas.

Since my son’s father is Christian, my son goes to him for Christmas.  For the past few years, my son and I have been “doing” Thanksgiving together.

While my father was alive, my son would come to my parents’ house and he and I would make a kosher turkey, and we would all get gorked on the usual T-day dishes.

Last year I was still in shock from my father’s death in early October, so my son and his then-girlfriend made a huge feast at his house.  People dropped by, roommates who had stayed in town for their own reasons cruised by and partook, we all smoked a lot of weed, and generally had a good time.  My mother was not invited, because she has made herself unwelcome by her delight in shaming me in front of my son.

This year my mother decided to fly to my cousins and have Thanksgiving with them.  I was not invited.  My cousins, who suck up to her for their own reasons, did not invite me either.  That being the case, I felt no pangs of guilt when I accepted my son’s invitation, party of one.

Then my mother decided to cancel her Thanksgiving plans, for her own reasons.  Since she knew my son had invited me (party of one), she got herself invited to one of her many friends, who has a big family, so my mom could feel really angry that her own family had not invited her.

For some reason my son did not invite anyone else to dinner.  His own reasons, I guess.  It was a little weird having just he and I, especially since he was in one of his dark moods, brooding and irritable.  I really wish he would start taking lithium again, but he angrily rejects the diagnosis of Bipolar Disorder that, in his opinion, was foisted upon him as a teenager.

So that was Thursday.

I slept in my camper van, in the parking lot of his apartment complex.  One of his neighbors, who had clearly been watching out for me, accosted me as I headed out to go to bed, demanding to know if I was visiting someone in the complex.  Surely he had seen me exiting my son’s door…

My nerves were already frazzled from dinner with my glowering son, so I fired back,

“Why do you want to know?”

“Because I think you’re just camping here.”  Whoa, let’s just get some holiday spirit of giving on here, hey?

I wanted to say to him, “Listen, Mr. Nice Guy, even if I was ‘just camping here,’ there’s a whole fucking empty parking lot because everyone has gone elsewhere for the holiday.  And what are you angry at, anyway?”

But I didn’t say that, because there’s always the possibility that a poor unhappy fucker like that will call the police, and I was already tired and tense enough.  So instead I said,

“Well, I am camping here.  This (pointing to my camper) is my bedroom.  I’m visiting ____ in Apartment _____.  Would you like him to come out and speak with you?”

As it turns out, this unfortunate fellow has seen my son, who is a weight lifter and quite muscular and buff.  So the sorry sucker subsided, and allowed as how that would not be necessary.  I also subsided, went into my spaceship and slept fitfully, as people constantly came and went, car lights and porch lights flashing.  My PTSD surrounding cops blazed like a tiger in the night.

Friday.  I woke up feeling like shit.  Depression.  Again. Still.

Went in and stood under my son’s excellent shower for half an hour while he went to work for a while.

When he came back, I said, “Listen, I’m feeling really disorganized brain-wise.  Do you mind if I hang out till tomorrow?”

The minute the words left my mouth I saw the twitch in his face that said, Oh No, Not That!

“Um…listen, Mom, to be honest, um, I really need my space.”

My heart hit the pavement.  Then I noticed the spiffy outfit.

Date.

Yeah, I was glad he was able to tell me no, but on the other hand I wished he had seen fit to be honest and say something more like, “Oh wow, Mom, I really wish you could, but since I thought you were leaving today, I made plans.”  That would have sent me off with a smile and a lighter heart.

“Oh, that’s OK,” I chirped, suddenly feeling like I’d been handed the bum rush.*

He graciously allowed me to stay long enough to use his internet to find a campground.  I found one pretty close by, said my goodbyes, and lit a shuck out of there.**

____________________________________________________

I called my mother today, just to see how she is doing, and I wish I had put money on the bet that I made with myself.  I would have won.  She barely spoke to me, and clearly had her victim act all planned out, in case I called.  I laughed.  Couldn’t help myself: it was all too predictable.

Now for the Miracle part.

My sweet Belgian Malinois, Atina, is most certainly an angel.

She sleeps in the right-hand third of my bed.  The left-hand third is reserved for all the computer-related shit that won’t fit anywhere else.

The only thing I had the energy to make for dinner was a cup of gluten-free microwave macaroni and cheese.  While I was mechanically going through the motions of making it, Atina was busy doing something in the bed.

She was pushing my duvet into a nest-like shape toward the pillow.  No, wait.  She was pushing it with her nose, straightening the edge up toward the pillow.  I thought, you cutie, you are making yourself a nest out of my duvet, and you know that’s my spot in the bed!  But I did not scold her.  My heart was brimming with love.  She pushed and pulled at my pillow, fluffing it and making it into a nice continuum with my duvet.  Aha, I thought, now I will see you plump yourself down in my spot!

But that’s not what she was about at all.

When she got my part of the bed all fixed up to her satisfaction, she plopped herself down–on her side of the bed!  She had made my bed up–for me!

I dropped what I was doing and hugged and kissed her for a long time.  By the way she reacted, she knew that I knew what she had done for me…she made a place for me to rest.  She did it with love and care.  As I write this, I am lying in the bed my dog prepared for me.  Her breathing is soft and even as she sleeps in her own third of the bed.

“Friends may come and friends may go, but your dog will always be glad to see you.”

_____________________________________________________

*”The bum rush”: A term dating from the Great Depression and possibly earlier, when many out-of-work men went “on the bum,” going from door to door begging for food, money, a place to sleep…if the man of the house took offense, the beggar would be chased off the place–“given the bum rush.”

**”To light a shuck” means “to leave in a hurry.”  It has its origin in the  Civil War, when dried corn shucks were used as fuses for light cannons and field artillery.  Once you “lit a shuck,” you had to run like hell because not only did the big guns recoil (and could run you over), but also sometimes the cannons would backfire, shooting cannon balls behind instead of in front of them.  The idiom is still in use in the Southern and Southwestern United States.  It is one of my favorites.