Night on the Rack

Sleep is supposed to be restorative, or so we are taught.

Last night proved anything but.  I lost count of the awakenings occasioned by the loud complaints of various joints and their wounds. 

At 0230 I arose and rummaged through my bandage box, half asleep but unable to finish the job because of the excruciating hypersensitivity of the skin overlying the destruction in my wrist.  It feels like a remake of the RSD from 30 years ago…can that be?  I don’t know, but it is so stupidly sensitive that the mere touch of my well-padded wrist brace feels like liquid fire.  That’s what RSD feels like.

In between excursions to the bathroom and to the bandage box for a piece of biogel to put over my wrist bone, my night was spent in my mind’s idea of a torture chamber.

The scene:  I am conscious that I have been brought to this torture chamber to be “interrogated.”  I have no idea why.  The torturer is probing my mind for vulnerabilities.  At the same time, I am probing my mind for strengths and strategies for survival of what looks to be a prolonged ordeal.  I have no facts to give up, no-one to betray except my own autonomy.  

For that’s what’s at stake, isn’t it?  That’s the thing we, or I for one, most fear losing: autonomy, self-determination.  Aside from mobility and self-expression, that’s what I stand to lose from prolonged torture.

He is sizing me up.  He’s making pleasantries.  I play along, playing for time.  I know he knows that’s what I’m doing.  “Just doing his job,” that’s all.  I ask about his family.  He laughs.  

He wants to know which kind of pain I fear most.  What??  Does he think I’m actually going to answer that…correctly?  Surely, if I say “burning,” he’s going to burn me?!  But wait, if I say “burning,” he’ll know that I’m trying to deflect…no. I’ll say “all kinds.”  I fear all kinds of pain!

He laughs again.

Maybe, he muses, what we need to do, in order to properly sort this, is to try…a sampler.  That way we can explore a variety of stimuli, to see what works best for you.  Pain is such an individual thing, you know…

I’m awake again.  The sky is growing faintly pale.  I decide to get up and enjoy the coolth of the dawn morning.  It’s going to be another blazing day in Paradise.

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?

I Got Carded!

And the good news is, I got carded for the first time in 32 years.

The State of Arizona, otherwise notable for refusing Daylight Savings Time, and for the Grand Canyon, and Tombstone, and Prescott, all splendid ideas–has seen fit to award me my Medical Marijuana card even though I’m not **yet** an official resident.

I think they took pity upon my sorry ass.

And they knew I needed it, because I am in a world of hurt.

My appointment with the Hand Surgeon arrived today.  I got to wait two hours, then saw his PA, who had filthy fingernails.

I find that utterly repulsive.  A health care practitioner MUST have clean fingernails.  Hell, I’m sure Doc Holliday had clean fingernails, even though he was a drunk, a gambler, and a sometime outlaw.

I even clean my own fingernails before I go to a doctor appointment.  When I was in practice, I not only cleaned them every morning before heading to the office, but also used a white nail pencil (which I have not seen in stores for years) under the tips, to clean them further and make them shine.

The PA was not in my life for long, however, as she took immediate note of the way I flinched and yelled “Ouch!” when she pressed on the place where it hurts.  I made it easy for her by showing her the place.

She left the room and returned with the actual hand surgeon, a very nice young man.  He extended his hand, I rose from my chair and shook it, we introduced ourselves by our first names, and he complimented my last hand surgeon on his fine handiwork and inquired how it was done.

“Pins,” I told him.  “He pinned the hell out of those little bones and told me never to move my wrist again.”

He laughed.  But that is true. 

Of course the surgeon had to manipulate my wrist some, just to get his own idea of what is fucked up wrong, so hours later the bitch is still throbbing.

Predictably, he ordered an MRI.  As a bonus, we’re going to have an arthrogram with our MRI.  Half an hour prior to the scan, he will inject some contrast material into my wrist joint, and the MRI will show where the stuff goes.  This will clarify what is ruptured.  I think I know.  I’d make a bet with my doc, but I think we’re both on the same team.

So, after getting all the paperwork done I walked out to the parking lot, stuffing down a scream, and let the Biggess Doggess out to pee.

Aha, there is my phone!  I knew I left it somewhere.

Three messages from the spine institute in Denver (thank you, friend who suggested this!).  Two of their spine surgeons have reviewed the imaging studies I sent them, and both are of the opinion that I need “decompression and fusion at two levels (of my neck)”, just the same as the spine surgeon here in Flagstaff. 

I guess I will be having a busy spring.

It’s hard to do this kind of shit all by myself.  I wish I had the money for hotel rooms and private duty nurses.  I don’t, so there will be some sort of arrangement with hospital security so I can stay in my van in the hospital parking lot for the hand surgery.  The spine surgery recovery will have to be in some rehab facility, ick.  And poor Atina will have her first boarding experience.  Ever since I’ve had her, she’s been with me every single night, even after her own major surgeries.  It will seem really strange not to have her with me, but since I won’t be able to care for her, I guess that’s how it has to be.

It was getting late by this time, so I drove back to the campground, still suppressing screams.  It upsets Atina terribly when I scream.  So I rubbed her head and ears all the way back, driving with my solidly braced up bad hand.  One thing about having a lot of orthopedic injuries, you get pretty good at bracing and splinting, and at driving with one hand.

Back at the old campground, I rummaged in my stash bag and found a strain of legal (I have my card, remember) cannabis called Blueberry Trinity, which I imagine might be named for the “Trinity” nuclear fission experiments.  Whatever.  I inhaled its vapors, then set to work on a few shots of whiskey.  No, not the best coping mechanisms.  Fuck a bunch of coping mechanisms.  I needed oblivion.

The phone rang.

It was my old boyfriend and now for 18 years telephone friend Dick!  That’s not his actual name, but I know he won’t mind.  I spilled my guts to him, which was just what I needed.  He must have got “the vibe” that I needed help!  We talked all the way through his dinner.  His wife put up with it gracefully.  She is a graceful person, and I’m very glad they have each other.

Now the intoxicants have pretty much worn off.  It’s time for Atina and I to take our pills and go to sleep.  She’s lying up against me, upside down.  I’m intermittently rubbing her tummy.  Guess I’d better take her out for the last pee of the day, and call it a night.

Realization

This sudden and alarming loss of strength and control of my limbs, and even unsteady gait, combined with extreme discomfort in my neck and sometimes lower back, has me wondering what the next step might truly be.

I devoted all of today in researching what I have, and to my great surprise I emerged from the rabbit hole with a rabbit.

The rabbit has a name: Ehlos-Danlos syndrome, or EDS.  I arrived at this by filling out some standard forms that rheumatologists utilize, and found myself right in there amongst ’em.

This explains the extreme paper thin skin that tears if you use any kind of tape, Tegaderm, anything.  It tears off in sheets, splitting just at the level where the pain nerves are, and the wounds take weeks to months to heal, leaving horrid scars.  I have several scars from blood draw needle sticks that make me look like an effin junkie.

Speaking of which, I would fail terribly at being a junkie, because my veins have become fragile, like my skin.  IVs last minutes, if the nurse can even find a likely looking vein.

“That one is blocked from a previous disaster,”  I remark, and move my arm so that she’s not tempted to, “Well, that doesn’t matter, what YOU say.  Just watch me!”  Uh, no.

“That one has a valve in it (which makes them either clot or blow up)….”  “Tsk!” She runs her finger along the vein, watching it collapse and fill again.  OK, score one for the annoying patient!

“That one rolls terribly,” I observe.  “It’s good to hold it in two places so it won’t try to get away from you:-D” humor is always good, yes?

She snorts, throws down her nitrile gloves, and stomps off muttering about sending someone else in, this is over her head.  Well done.

Then there are the veins themselves.  I do not know how, first of all, how vascular access could be accomplished, for purposes of surgery.  And I am not at all sure of the wisdom of pushing and pulling at structures like the arteries in my spinal column, or even my jugular vein and carotid artery.  I don’t want a stroke from a leaky artery or a blood clot from a stressed out vein. 

So that leaves the question: am I even a surgical candidate?  And if not, what can be done to keep me walking and talking and writing on this touchscreen with one finger?

As I was wrestling with my nightgown it occurred to me:

My goal is to learn my deepest essence.  I like who I have turned out to be, with some notable exceptions. 

And I’d like to devote time to really listening deeply, and having understanding of the spirit that was injected into this crumbling body.

If I can understand that, it will help me to manage the coming events, whatever they turn out to be.

Two is too many

It seems that I have been putting off writing this post until I can’t anymore.

The reason I have procrastinated so long is…well, there are two reasons: fear, and pain.

I came to Flagstaff several weeks ago in search of a hand surgeon.  I took a nasty fall over a log, as some of you might remember, and after waiting a suitable number of days to make sure it wasn’t just sprained, sought care at an orthopedic urgent care facility. 

There I met a young, arrogant, and completely disagreeable orthopedist, who humiliated me in numerous ways until his assistant hipped him to the fact that he and I share a first name, to wit: “Doctor.”  Then he became all cozy and collegial, remarking on the skill of the last hand surgeon’s handiwork, as we gazed at my Xray together.  I was musing how overexposed the film was.  He was burbling away.  I had dissociated long since and have no idea what he said after that.

But I picked up the hand surgeon’s card on my way out, and spied the spine surgeon’s as well.

The chirpy receptionist volunteered to make me some appointments if I needed them, right there on the spot, so I took her up on it.

Let’s see, hand surgeon, since that came first.  And my poor arthritic shoulders were killing me, especially after the recent acrobatic stunts.  I’d have an appointment with the non-interventionist arthritis doctor, please. 

And then there is my spine, bane of my existence since 1985.  A couple of lumbar discs ruptured back then.  In 1987, emergency surgery for a ruptured disc in my neck.  Oh, and that rupture occurred on the first night of my internship.  I drew call my first night, of course.  “Black Cloud.” 

Over the three years of my residency I would go on to rupture at least five discs.  The spine surgeons threatened me with putting metal rods on both sides of my spine.  I demurred, and opted for a custom molded hard plastic exoskeleton type of thing that extended from armpits to groin, to be worn 23 3/4 hours per day.  Fifteen minutes to shower, then back into the Plastic Maiden.

In the intervening 30 years, my spine has had its moments of freedom from having to drag me into its consciousness.  Curiously enough, my best years were when I had horses and rode daily.  The gentle rocking motion kept my spine well oiled, and the occasional eruption of a bucking episode provided any needed adjustments.

Then I got Rolfed by the former Captain of the Venezuelan Olympic Women’s Luge Team.  She was gigantic.  She was good.  It was excruciating.

My back didn’t dare go out if it meant going back to Alejandra.

After I returned from Israel to be with my father in his last years, my neck began to bother me enough so that I went to see a Physiatrist.

For those who are unfamiliar, a Physiatrist is an M.D. or D.O. who is trained in evaluating and treating musculoskeletal disorders non-surgically, with things like hydrotherapy and massage.  Sound good?

Actually, I did not choose this person specifically because she would be the most likely to send me to a Turkish Bath; it was simply a matter of Cut vs. Not-Cut.

Dr. Not-Cut did not send me to the Turkish Bath, nor even to Physical Therapy, but packed me off to her partner who does one thing exclusively: epidural injections.

Now, while I’ve had many a needle inserted into my spine at the lumbar region, I have never permitted such an intrusion into my neck, for the simple reason that it’s easy enough to prick a blood vessel by mistake, which can be problematic in the lumbar, but catastrophic in the cervical, because there is simply no room for anything like a blood clot in the spinal canal of the neck.

I went for it, purely because I couldn’t look down to tie my shoes for the pain.  My head felt like it was going to fall off at any moment, and at times I felt like beheading myself just to get it over with.

The procedure was terrifying.  It was painful.  It didn’t work.

Fast forward through several medication trials and much condescension on the part of Dr. Non, and at last I had an appointment with her Nurse Practitioner, who wisely prescribed a muscle relaxant, voila.  And a special hardshell collar to keep my head from falling off.  A wise and practical woman…And she even snuck me a small Rx for some tramadol, miracle!

And until the tumble over the log incident, that’s been keeping my neck pain down to a barely noticeable hum. 

Post-log-jam, things started kicking notches up the Pain Scale until I was hovering in the 8 range and started using my beastly hard surgical collar again.  This thing provides a tiny bit of traction, and it gets rid of the feeling that my head is falling off, but it digs cruelly into my flesh and is no fun.

I did not wear the collar to my appointment with the Instant Ortho Clinic. 

Two things you must never do, if you go to any kind of emergency services place:  do not wear a cervical collar, and never never never reveal that you have a mental illness; otherwise you will be instantaneously branded as a drug seeker, and no one will ever listen to you or even notice the bone sticking out of your leg at a crazy angle. 

And there is a third one, I have discovered, to my dismay:

Don’t be elderly.  You won’t count.

Time passes, and I get my turn with the Arizona Spine Specialist Dude, very highly Ivy League Specialty Boarded And Fellowshipped, all very nice to know.  Confidence.

He seemed like a nice chap for a surgeon.  Asked me why I was there, seemed to listen, actually examined me and discovered, dismal dismal discovery…I have lost virtually all muscle strength in my left arm.  I have no reflexes at all in my right arm, and abnormal ones in my left.  This must be why it takes me two hands to get my coffee cup up to my face.

It is no longer an issue of mere pain management.  It is an issue of preserving what function remains to me.

I need surgery.

The MRI could have looked worse.  It also could have looked better.  What is clear, is that the degenerative disease is crunching my spine like Pac Man.

I have had two appointments with the Spine Surgery People.  The first was with the actual surgeon, whom I liked, who treated me respectfully and did a good job of hitting the diagnostic nail on its head.

The second appointment was with the Physician’s Assistant.  I have no confidence in Physician’s Assistants, for the simple reason that in my opinion, there is some difference between the education of, for instance, my new Spine Surgeon, who had (after his Bachelor’s Degree) 4 years of medical school, 5 years of residency, 3 years of spine fellowship, and assorted certificates; whereas, a Physician’s Assistant has a grand total of 26 months of post-college training: the equivalent of a Master’s Degree, very nice, but not enough to develop much clinical experience.

So, with some trepidation, I met with the PA to go over my MRI results.  How could a person with so little training interpret advanced imaging and recommend treatment?

I was relieved to find out that she is, in fact, operating as the surgeon’s assistant and not as an independent entity, as so often happens today.

She had been thoroughly briefed by the surgeon on the MRI results, conveyed them to me, and explained the recommended treatment: spinal fusion at two levels.  She explained how this was done, and showed me an example of the titanium plate that would be installed, to stabilize things.

Any questions?

Uh, well, yes…what would happen if I opted to do nothing?

Well, of course, your disease would progress and those nerves would continue to lose function….

Oh.  Yes.  Definitely.  I see.

Any questions?  She gives me the crisp smile that is the equivalent of shooting one’s cuffs to glance at one’s watch.

Not at this moment, I tell her, but I’m sure I will have.

All right then, just call and let me know what you want to do.

We rise, shake collegial hands…

Several days later I realize I remember absolutely nothing about the visit.  Except the part about Surgery, and Fusing Vertebrae, and Possible Side Effects Including Quadriplegia…shit.

I called and left a message for the PA.  Two days later, she returned my call.

Yes, what was it?  Very snappish.  It’s five o’clock, poor thing must be hungry and tired…shit, there I go again making excuses for other people’s bad behavior. 

It’s that I have some questions about the surgery.

–I explained that in the office.  We place a tube down your windpipe, pull your windpipe and food tube to one side, and…(what is going on here?  She has my chart in front of her.  Why is she using the sixth grade description garbage?)

Yes, thank you, you did explain that part.  What I want to know is where, exactly, you place the titanium plate.

Exasperated sigh.  Again, with feeling:

–I told you, we move your windpipe and food tube…

Cheezes K. Reist, woman.  I want to know whether the plate is placed LATERALLY or IN THE MIDLINE???

–Midline.

Good.  How long will I be in the rehabilitation hospital postop?

–That depends on you.  She drops the phone.  Oh sorry.

How long until I am able to drive?

–That depends entirely on you.

What does that mean, exactly, please?

–That means however long you are on pain medication.  Could be two weeks, could be six weeks, depends on you.  Each patient is different.

Ah, now I have some useful information: they give you pain medicine postop!  What a good idea.

It really was like pulling teeth.  Look, if someone is going to do violent things to my neck bones, I want to know the details.  All of them.  Not the sixth grade version: for better or worse, I am a physician, and I need DETAILS.

So now I am spooked, very spooked, by the fact that the surgeon’s right hand woman is sidestepping badly.  It’s bad enough that I have to make a decision of this magnitude, without this person giving me the power trip.

I know I need the surgery.  I’ve investigated the surgeon and he comes up kosher. 

But what about this other person on his team, who seems to have enough power vested in her that she could cause me to suffer?

It happens that there is a branch of the Mayo Clinic in Phoenix, several hours from here.  I think I’ll mosey over there and see what it’s like.  I don’t believe there will be huge changes in my condition in the near term…I hope.  Maybe they have some other, brighter ideas.

And then…there is the first appointment with the Hand Surgeon to look forward to, in a week or so.  Something is very wrong with my wrist, because of the fall.  Very wrong. 

I wish I could get someone to order the MRI of my wrist BEFORE I see the Hand Surgeon, to save time.  I think I’ll call his office tomorrow and ask.  Can’t hurt.

I have waves of feelings of futility.  What is all this for?  The wrist, yes, that’s an injury and must be repaired, if possible.  But what about the spine?  I watched my father’s spine degenerate until finally he was literally a helpless bag of bones.

I must ask this surgeon, whose opinion I respect: what am I looking forward to?  How long will it be until another unstable section of my spine needs to be fused, and another, and another?  How much of this can the body endure?  Am I really buying time with this?  What sort of quality time?  How long till the wheelchair and the nursing home?  I need to know.  I will make another appointment.

There’s something I need to tell you.

I’ve been procrastinating, but I must gather courage and do it.

I haven’t wanted to blog about it because it makes me feel defeated, bad, and like a lousy person. I am afraid that my readers will hate me.

I thought about making up some kind of fairytale story to cover it up, and I almost got to believing it myself. I have a lot of grief about it, and I have a lot of grief about a lot of other things, and there’s only so much grief a person can have before you start wanting to make some things disappear from the grief radar.

But it’s no good. I have to face the fact: Noga is dead.

She died just before Memorial Day.

She didn’t get sick, or get run over by a car.

I had her euthanized, and here is why:

I adopted Noga at age 8 months. She was the “ugly duckling” from a show litter, and had been cast aside and ignored, kept crated most of the time. She was not potty trained or socialized at all. She was a happy little girl, but also had a deep anger and resentment toward anything she didn’t like, and she expressed it in a particularly unpleasant way.

If, for instance, I left her in the car on a perfectly cool day in order to run into the grocery or the drug store, when I came back there would be a pile of poop and a puddle of pee on my seat.

I thought this was fear, so even though I gave her a stern lecture about it, I forgave it and went about desensitizing her by going places in the car that ended up in walks in the park, or other pleasant things. Little did I know that I was conditioning her to expect something special for her every time we got in the car!

Eventually she got so that she didn’t make a bathroom out of my car every time I left her, but as soon as I got back to the car I had to kiss and cuddle her and make a big deal of how good she was, which I was happy to do, but if for some reason I was in a hurry and had to make it a quick one, she would sulk in the back seat and ignore me for the rest of the day.

I posted about this on the Lhasa Apso group board, and the answer I got from one of the world-class show breeders was:

“Apsos are a self-serving lot.”

I nodded, shrugged, and went on.

Over five years she became my little buddy, and accompanied me through my dad’s dying, and during his last weeks she was the only one who could make him laugh. When he died, I had to physically remove her from his body. When she loved, she loved fiercely, and that was the root of the problem.

The tears are pouring down my face now, and it’s hard to type.

As most of you know, after my father’s death I bought a small RV, just a conversion van, really, and Noga and I hit the road.

She didn’t like it. She really, really didn’t like it.

Before The Road, when we were living in my father’s studio, she had me all to herself. In fact, she was my only diversion from the constant blackness of my father’s terminal illness and my mother’s terminal abuse of my poor helpless Dad, which I was powerless to stop because not one single person in Adult Services would believe that my “angel” mother, who was a Geriatric Social Worker and had actually trained most of them, could be capable of such a thing, and they all knew about my mental illness, so poor Dad suffered until he went into the nursing home and was finally protected.

And Noga came everywhere with me, and was a big hit with everyone in the nursing home. She especially loved the people with Alzheimer’s, and became the unofficial Therapy Dog of the dementia unit.

But on the other hand, she bit people.

Specifically, she bit anyone who tried to approach me, or my dad—the Hospice nurses, for instance. We thought she was being protective, and since she was only 12 pounds everyone thought it was cute. I made sure to grab her up when anyone came, and most of the time was successful. Occasionally she did get somebody, but we were in Appalachia and people there are used to dogs that bite. Dogs bite, right?

For some reason, she liked to attack children. I had a heck of a time walking her in places where children might run by, or run up and try to pet her; so I made a point of taking her places where it was only she and I. That was how she liked it. But if a child happened to come by, she would lunge at them and I had to be vigilant with the leash, to jerk her back before those sharp little teeth made contact.

Back to The Road.

At first it was OK because she got to sit next to me while I drove, and of course she was my Service Dog so we went everywhere together.

But then something terrible happened. I used my newly found mobility to go and visit dear friends whom I had not seen in many years.

Of course, Noga came too—why wouldn’t she?

But I’ve left out one piece. Rewind five years.

After I brought her home for the first time, she jumped up on my bed and peed and pooped right on it.

Of course I was horrified, especially since it was a furnished house that I was renting from one of my parents’ friends. The quilt was a fine antique. I was in a total state of panic. I assumed that the reason she had done it was simply that she was not potty trained, and disoriented to boot; so I quickly cleaned up the mess, had the quilt professionally cleaned, and put my own linens on the bed.

Then I thought, well, I’ve trained a few dogs, so what should I do? Naturally, the way we potty train puppies is with a crate. We put them in the crate, take them outside every few hours, and praise them to the skies when they do their business where we want them to. Then it’s playtime, and tired puppies go back in the crate for a nap.

But since Noga was used to using her crate for a bathroom, she obliged me by going pee in the yard, but she saved her poop for her crate.

So every day I had not only old towels to clean up and wash, but also a filthy dog.

Then I had a brainstorm: put “potty pads” in the crate and leave the door open. Sure enough, she used her crate for a bathroom. Then I moved the potty pads to a spot near the front door, and took the crate away. Yup, she continued to use the potty pads. Life was good.

Then my son came to visit. I made up his bed, he threw his duffle in the corner, and we sat up talking till late at night as usual. Of course he made much of Noga, and she adored him immediately. He is a dog magnet.

Finally we dragged ourselves off to our respective beds, but—

“Um, Mom?”

I opened my door to find him standing in the doorway of his room. On his pillow was a neat little present: A pile of dog shit. And to make it extra nice, she’d peed on his quilt, too!

I was furious. I grabbed her by the scruff and held her over what she’d done, screaming “No! No! No!” My son fled the room, convulsed with laughter. It was too bizarre.

OK, in this case, jealousy. But using excrement as a tool for expressing displeasure? No, impossible. She’s a dog, for heaven’s sake. A cat might do that, but a dog? It did not make any sense.

If I described every similar instance, every defilement of the bed of a friend who came to visit, or in whose home I was a guest, it would fill so many feet of blog space that you’d get bored and click away, if you haven’t already.

I spent $400 on a phone consultation with an animal behaviorist at University of Tennessee. She chalked it up to a behavioral issue due to a traumatic puppyhood, and gave me some suggestions that didn’t work. The only thing that did work was my undivided attention, which she got most of the time anyway because of my reclusive nature and the state of total isolation that I lived in.

I knew it wasn’t doggy IBS or anything like that, because she flew to Israel and back with me three times, 14 hours each way, sitting on my lap, and never had an accident. And of course there were the innumerable vet visits, racking up thousands on lab tests that showed nothing.

And so it was, that one morning, after I had made the drive to Rochester, NY, to visit a couple who have literally been parents to me when my mother sent me out of her life, I woke up in my van and smelled something. My covers were wet. There was a pile of shit at the foot of my bed, and my dear little dog had rolled in it.

She watched as I opened my eyes. She wagged her tail. I screamed “Nooooooo!!!!!” and she wagged it some more.

I jumped out of bed, dressed, wadded up my bedding and stuffed it into a garbage bag, with the dog shut up in the tiny bathroom so she couldn’t smear her shit-covered fur all over the place.

Before I washed her off under the hose, I took a sample to take to the vet. Maybe she had eaten something bad, maybe her monthly worm medicine didn’t work, maybe I had forgotten to give it to her.

Nope, perfectly normal poop. The vet looked grim and silent.

“What do you think it is?” I didn’t tell him about her long history of pooping on people’s beds.

“Dunno, maybe she’s stressed or something. Come back if it happens again.”

It happened again, that very night. I am sorry to say I lost my temper and hit her, then felt horrible. She didn’t seem to mind. She looked at me and wagged her tail. I guess any attention is good attention to some people.

That night I tied her up in the aisle of the van. In the morning I had to bag up the carpet runner and throw it in the trash, because she had shat all up and down it and rolled in it too. All I could do was cry and wash the dog again.

The next night I put her in the bathroom, which has a molded plastic floor, and lined it with potty pads (did I mention I had lined the entire van with potty pads, but she scratched them aside so she could get to the floor?) thinking perhaps that would at least make cleanup easier, but this time, instead of shitting, she went to work attempting to chew her way out, so that now I have something to remember her by—a totally trashed, formerly brand-new bathroom door. Got me again.

In the meantime, my friend’s husband caught her twice sneaking up the stairs, trying to get to their bed. Oh. My. God. My friend has a poop phobia, and vomits if she even smells it! And Noga snarled at him when he intercepted her. Who would have imagined???

Then I got a call that my aunt, who is 93, had been moved to New Jersey from Florida to live by her daughter (my cousin, I guess you could say), and her daughter needed to go to Florida to close up her mother’s house. That meant Auntie would be alone. I volunteered to Auntie-sit, so off I went to New Jersey, with one or two stops at Laundromats along the way.

Hell had descended upon me. My beloved little angel had turned on me, and it seemed there was nothing I could do about it.

My cousin made arrangements for me to stay at a campground very near the nursing home, so I could visit my aunt two or three times a day. It was a normal campground, full of kids running around and riding bikes. Noga bit two of them, not badly, but she bit them. Fortunately nothing came of it, except that I had to walk her in the nasty woods behind the campground.  I got two ticks.

I continued making daily trips to the campground Laundromat. This was getting very expensive, as well as being just, I can’t say it any other way, hell on earth.

I took another poop sample to a local vet. No parasites, pathogens, nothing. He was very sympathetic, and sent me to another vet who specialized in behavioral problems. He listened to me carefully and here is what he said:

“You know, there are two main classifications of behavioral problems in dogs. There are neuroses, like separation anxiety, that we can treat with medications and behavior modification. Then there are personality disorders, which in the case of dogs, are inborn disorders of the brain. We can try medications (listed them off) if you want…”

I mentioned that I had been giving her Ativan, in case of anxiety, but even though it did make her groggy it did not stop the shitting behavior.

“I thought not. What she is doing is expressing her displeasure. She is punishing you.” I nodded. I knew that. I just had not allowed myself to believe it, because she was my little angel and that just could not be true!

“You have choices. You can try medicating her. Or you can live with it.”

At this point I’m shaking, tears and snot are streaming down my face. Noga is strangely quiet. It’s as if she can understand what we’re talking about.

“I can’t live like this anymore!” I blubbered. “What about finding her a new home?”

He shook his head. No, she would just do the same thing, and then maybe she would end up in some shelter, and she’s adorable so someone would immediately adopt her, and eventually she would end up being abused, maybe sooner than later…I was shaking by this time. I knew where he was going.

“So the only good choice for her is to put her to sleep?”

“Well, it depends how long you can tolerate this. As I said, we can try medication, but frankly I do not believe that it will work.”

I searched inside my heart. I could not live this way. I had already been literally swimming in dog excrement for a month, with no end in sight. I handed her over to the vet tech and stumbled to the front desk, paid the bill, and blinded with tears climbed into my van and fell onto the bare bed, stripped for the thirtieth time, and laid there crying until it was time to go visit my aunt.

“Where’s Noga?! I thought you were going to bring her today!”

My aunt and I have always been close. She’s been much more of a mother to me than my own mother ever was. I blubbered out the whole story.

“Oh Baby, I’m so sorry. I had no idea. Well, you did the right thing. She would have had a miserable life, and she certainly made your life miserable. You’ll both be better off this way.”

I got the same feedback from other friends who knew what was going on. My son was really devastated, though he tried to hide it, but he knew how long I’d been trying to help Noga get over whatever this was, because I loved her so dearly.

And now she’s gone, and I have another dog, because I must have a dog to let me know what’s real and what’s not.

But there will never be another little sweet thing like Noga, even though things got so bad that it had to end.

Narcissism and Slavery

As the festival of Passover approaches, it’s a tradition among some of us, Jews and non-Jews alike, to start thinking about the Passover story as an allegorical reference to how we limit ourselves, and how we can use our inner resources to liberate ourselves.  We think about our Inner Pharaoh, and what we need to do to get free of him.

The Hebrew word for Egypt is “Mitzrayim.”  The word can be broken down into its roots: “Mi” = “from,” “tzr” or “tzar”=narrow place, tight squeeze, trouble, “yim”=masculine plural ending.  So you could say that our own personal Mitzrayim is the narrow, tight places in which we find ourselves.  Our challenge during the spring season of new growth and opening is to do just that: to split the Red Sea, to walk through scary tight places in order to remember who we are, and to grow past our narrow-minded presuppositions, to give birth to our newly liberated selves.

The other day at the nursing home my mother commanded (not asked–commanded) me to appear before her, at her house, at seven PM.  She refused to give me any details, just “be there.”  So I showed up at 7:30, since I had something to do prior and she had not asked me if that was a convenient time.  Did it give me pleasure to know that she would be annoyed?  Perhaps, yet I also know that annoying her will eventually come back to haunt me.  Sometimes it’s worth it.

I got there, and she is sitting in Dad’s recliner, which instantly puts me on guard.  There is this thing in Jewish culture where a person’s chair is part of their personal sacred space, and intentionally sitting in someone else’s place is considered an act of disrespect.  So I am on guard anyway, and this just confirms that I better stay there.

As I perched on the arm of the couch, not wanting to sit in HER place (and besides, it gives me the creeps), she pronounced clearly and with authority:  “I am NOT asking your permission.”  

“OK,” I said, waiting for the other shoe to drop.

Then she tells me in great detail of her plans to bring Dad home from the nursing home, how she and I will care for him with the help of whatever aides she can find; that she’s located a couple of them and they only charge $14 an hour, and besides, we would only need them for showering….on and on.  Apparently she has not taken into consideration that it takes two young strong people to get him from the bed to the wheelchair, to the toilet, to diaper and dress him…and he’s been discharged from Physical Therapy because he’s not made progress….and his meals are now put through a blender so that he doesn’t choke, which had been one of my big concerns even before the nursing home.

And She Who Must Be Obeyed is NOT asking my permission.  That means I don’t even have to bother voicing my concerns, because they’ve already been summarily dismissed.

I decide that I don’t have to have a “dog in that fight,” as they say here in the mountains.  I keep my mouth shut.  Poor Dad will be the one who suffers, and I hate that, but since “my permission” has not been asked, I won’t ask a lot of permission to be out of the country when I need to be.

And I’ll need to be, because that scenario is so excruciatingly painful to me that I will have to give myself a lot of space, knowing that injuring myself in order to try to further Mom’s follies is not going to help Dad, in the long run.

A few days later, I am told that “we” are taking Dad to the dentist.  The aides at the nursing home will help us get him in the car.  Who will get him out?  Oh, they have a wheelchair at the dentist.  She already checked that out, Stupid.  

I don’t like this.  I’m just getting over an episode of seriously-bad-back caused by catching Dad as he was on his way to the pavement, after taking him to another appointment.  Mom had, in her trademark style, strode around to the driver’s seat, leaving me to somehow get Dad into the back seat.  He collapsed, and I was holding him up calling for help, when one of the familiar Viet Nam Veteran street people came and helped me get him into the car.  I gave him all the cash I had, and I wish there had been more.  But it was too late for my back.

So I told her my back won’t take it, and she sneers at me and says that hers will.

There is a county transport service that has wheelchair accessible vans.  I told this to my mother, who immediately denied it.  Then she called about it, and wonder of wonders!  Of course it was her idea now; but at least.

“You will be there at 12:30 to meet the van.  You will ride in the van with Dad to the dentist.  His appointment is at one.  My appointment is at two.  So you have to ride in the van with Dad.  DON’T BE LATE!!!”

OK.  I will be there at 12:30, and I will go into the appointment, because Dad has been hallucinating lately and I worry about the dentist’s chair and all the noises, and his trouble swallowing, and the fact that he will not be able to hold the little saliva sucker thing that you now have to hold yourself.

Isn’t it funny how it really is the straw that breaks the camel’s back?  Here’s mine (my latest, anyway):

Friday afternoon, my mother shows up at my door with my mail.  She knows I don’t want her picking up my mail (we don’t have mail delivery here, so we have to go to the post office for it), but she had some excuse this time.

After an uncomfortable moment standing at the door, I decide to show her dinner in progress.  I always cook them a kosher meal for Friday Nights, and I bring it wherever they happen to be.  Nowadays I’m bringing it to the nursing home.  So I thought I would show her the kosher chicken rolling around in the kosher rotisserie, the pans of veggies, the potatoes…..oh, I do it all the time!

“See, Mommy, see what I did?  It’s for YOU, Mommy!  I picked these flowers for YOU!  I cooked this food for YOU!  Aren’t you happy with me now?  Won’t this make you love me and stop saying those horrible things to me?”  Says the little girl Laura, tears brimming but not falling, for that would make her laugh: “You need to grow a thicker skin.”

My kitchen is very tiny.  Very tiny indeed.  In fact, with my mother in it, I found I suddenly could not breathe.

“Let’s move into a bigger space.  I’m feeling claustrophobic,” I said.

Her little malevolent eyes glitter.

“Claustrophobic, eh?  What DON’T you have?  I think you’re a hypochondriac.

“Hypochondriac?” I repeat, shocked.

“Yes, hypochondriac.” She says emphatically.

I see her to the door, slam it, and collapse in a heap of raging tears.  As soon as her car leaves the driveway I start screaming.  I beg G-d’s forgiveness as I curse my mother, bringing down all of Hell’s fires on her head, into her belly, wishing her as painful a death as she engineered for her own mother…..and then I stop suddenly, realizing what has happened, that I have absorbed the poison from the wicked Queen’s apple, and if I continue in this manner I will, G-d forbid, become my own hateful mother.  My own personal Pharaoh.

So I have been praying for some enlightenment, some clarity, some “how-to” that will get me through this piece of time surrounding my father’s death.  My very own Mitzrayim: stuck in the narrows, whichever way I turn.  Face-to-face with Pharaoh, a smirk and a sneer and a twisting of the guts.

Here is some really good advice on learning to open one’s mouth from The Invisible Scar, a blog dedicated to healing for Adult Children of Narcisists (ACON).

But I am not ready to deal with the backlash that always comes with opening my mouth.  I am mortally afraid that if my mother escalates (a certainty) or lays hands on me (a distinct possibility), that I might “lose it” and do something violent, G-d forbid.

So I am keeping my mouth tightly closed, which I know is part of the Narcissist’s Weapon Arsenal.  I don’t want to emulate her, I don’t want to BE her–and I know that’s a danger here.  But right now I can’t deal with another knife wound.  Figuratively, that is.

Tomorrow, at the one o’clock meeting (DON’T BE LATE), my dad’s fate will be decided: does he stay in the nursing home until he dies, or do we bring him home to die, however long that takes ( he estimates two years, and I believe him).  Although I have been told I do not have a voice in this decision, I damn well do, and I will use it.  I plan to make my case very clearly that there is no way that he could possibly get the care he needs at home.

Feeding, changing his diaper and his bed three or four times a day, dressing him, getting him showered, all without any assistance from him, because he is so debilitated……these things cannot be done by an angry 87 year old harpy, and aside from feeding him, my arthritic body barely allows me to hold his head up to drink from a cup.

My voice says NO.  We CANNOT bring Dad home.  I WILL NOT see his last days sullied by that screaming harpy cursing him for being an old, debilitated man.  I will make that clear, in an unemotional, measured way: that is MY way, MY voice, because my voice has been crushed since I came out of the incubator at one month of age.

I did make contact with a regional Veterans’ Administration representative–my Dad is a WWII combat veteran–who is doing his best to get funding to pay for either nursing home or home care.  She, my mother, had been telling me with that “you stupid idiot, you should know better” tone of voice, that the VA would never give them money.   Well, guess what: they will be getting around $2000/month in Veterans’ Benefits–“For Dad and me,” she emphasized, as if I would want a single cent from them!  And of course she takes credit for the VA angle.  But at least it will take the financial incentive to take him home off–otherwise she would have to “spend down” her own money before Medicaid would pick up the nursing home tab.

Speaking of money, before Dad had his last fall, the one that landed him in the nursing home, I had been caring for him two days a week, plus making dinner for them (my own money, and let me tell you, kosher meat is not cheap) on Friday nights.  The county Social Services worker told my mom that there was money available to pay me for my work as a caregiver.  My mother turned it down on the grounds that a child should not be paid for taking care of a parent.  Thank G-d I have money to live on now, but I am furiously saving for the day that that source of funds dries up, when I turn 65, in 4 1/2 years.  That money would have come in right handy, to stash away for the desperate times that will follow the cessation of my private disability funds.

It is a terrible thing to say, but I am looking forward to the day that I am free from this elephant sitting on my heart.  I know what that will mean.  He is not yet ready to go; he needs to rectify some issues inside himself.  I don’t want to rush that.  But one thing I have learned in my chaotic life is patience.  I once heard that the best way to victory over an abusive parent is to outlive them.  I don’t know if I will outlive my mother, but in a way my death preceding hers would also be a victory.  I just don’t want to see her sneering face on the “other side.”

And since I have a feeling that that would be a very effective form of Hell, I had better be careful not to “become my enemy.”

Somehow I must do the work necessary to face down my Inner Pharaoh and in doing so, lose the fear that has kept me in slavery for 60 1/2 years.

And Here Goes The Other One…What Will I Do?

As my regular readers know, life with my mom has always been far from pleasant.

And now….Dementia Case #2.

I had suspected it, even before I left Jerusalem in 2011 (January 11, 2011, to be exact) to come to the US and help with my dad.  Fears out of proportion, throwing screaming fits in public and not just in private, arguing with the carpenter about whether or not she had paid his bill (she hadn’t).  He even came to me and asked if I had noticed anything wrong with my mom.  He’s been working for us for years, and never saw anything like that.

Interesting how dementia brings out a person’s true character traits.  Take my dad: soft, sweet, gentle, kind.  Very occasionally grumpy or moody, but who isn’t?

My mom, on the other hand, is selfish, angry, suspicious, and nasty.  And she lies.  In fact, she likes to say, “a little white lie won’t hurt.”

The hell it won’t!

But one or two of you might know her personally, and you will say, “Oh, but she is just the sweetest person!  How can you say such things about her?  It must be YOUR misperception.”

The hell I say!

That’s the way people with Narcissistic Personality Disorder operate.  They bask in public accolades, while conducting a Reign of Terror at home.  But the abused ones are in a pickle, because if we try to get help from anyone who knows her, they will shout, “How can you say such a thing about your lovely mother, who is such a gift to the community, such an angel, has dried so many tears and started so many non-profit charities!?”

So in general we just shut up and take it, and marry someone equally dysfunctional.

That’s the way I grew up.  And my dad was terrified of her and hopelessly in love with her, both at once.

Think “Mommie Dearest.”

No, she never dragged me out of bed to scrub the bathroom floor, but plenty went on, and I won’t elaborate here, because today I got the confirmation of a growing suspicion: she’s got dementia.

I’ve been too caught up in the emotional tempest surrounding Dad’s plight to really pay attention to her acting-out.  I’ve been mightily pissed off because she threw a bunch of pottery items that my dad made (he’s a potter) behind the refrigerator.  Right.  And she somehow disposed of a beautiful porcelain vase that Dad and I collaborated on back in my painter days.  It just “disappeared.”  And like the little cups that ended up smashed behind the refrigerator, every inquiry about my vase gets an “I don’t know” with averted eyes and a little smirk.

She’s been on a gaslighting campaign regarding my memory, accusing me of forgetting things that she never told me, such as important appointments.  Gaslighting, if you don’t already know, is when someone tries to make you think you’re crazy by setting up situations that don’t really exist.  It’s a power trip, or it can be used as a coverup for someone’s own mistakes.

Last year I went to the trouble of having a complete cognitive workup–lasted two days and cost me $1200.  And it turns out that I do have one very specific hole in my memory: reconstruction of long and detailed stories–which is distressing for someone whose job used to be collecting and reconstructing long and detailed stories, as a physician.  But my long, medium, and short-term memories are perfect.  So it ain’t me, babe, as someone once wrote in a song.

So this whole business of Dad being in a nursing home has brought out some interesting (heh) and instructive situations.  On a couple of occasions she has asked me to bring something from the house, and when I bought it, she would scold me for bringing the wrong thing, citing my “terrible memory.”

Today, in fact, she called me from the nursing home, asking me to bring Dad’s slippers and a couple of packages of pull-up diapers.  When I reached their house, though, she was already home, having lunch.  The slippers were sitting on a chair.  I picked them up to put them in my backpack and she screamed with her mouth full, “No, not that!  Those are his Pads.”  “Pads” are the brand name of the slippers.

“Didn’t you put these out for me to take?  Did you mean a different pair of slippers?”

“You don’t know what you’re doing.  Go take your shower.”  The building I live in does not have a bathroom, in the usual sense of the word, and I was in fact planning to take a shower at their house before going to the nursing home.  So, cursing under my breath, I did.

I hoped that by the time I finished my toilette that she would be in a more reasonable mood, but no luck.  As soon as I landed downstairs she began screaming at me about my terrible memory, and shoved a bag of stuff in my general direction.  It contained a couple of packets of diapers, with the already mentioned slippers on top.

“Wait a minute, Mom,” I said, trying to control my temper and not doing a very good job.  “These are the same slippers that you said were the wrong ones.  These are the ones that were sitting on the chair, and I picked them up, and you said they weren’t the right ones!”

“No I didn’t!  I told you to get the Depends (diapers).  You don’t know what you’re talking about.  You can’t remember anything!”

At that point I put my coat on, gathered up my stuff and the package, and sailed out the door cursing, not so much under my breath, and not caring whether she heard or not.

When the blood stopped pounding in my ears, I realized that my suspicion is dead-on: she’s sliding into dementia.

Now what am I gonna do?

My dad is safe where he is, but she is a loose cannon and could do anything.  She’s already made some disastrous financial decisions that I am powerless to reverse, because at this point it would be very difficult to prove her incompetent.  That may change very quickly.  But what am I going to do in the meantime, having to interact with her on a daily basis because of my dad, having her living in a place that is now completely inappropriate for her, and having her seething anger aimed in my direction?    Granted, part of the anger is due to the grieving process for my dad.  But that does not excuse her leveling it at me.

I can’t go to the Social Services people, because they all know her in her “public face” and none of them would believe me if I tried to tell them what’s going on.  And of course if they approached her about it, she would tell them all about her mentally ill daughter with the “terrible memory.”  She even has a story about how my memory got so terrible: it was the Transcranial Magnetic Stimulation treatments that have saved my life over the years.  That’s her explanation for why I can’t remember anything.  And of course the Social Services people would shake their heads and cluck their tongues, because they KNOW her and they know she’s a competent person, a kind, sweet angel.

So what am I going to do?

Denial is a River in Egypt

Pam Tillis co-wrote the song that goes, “Just call me Cleopatra, everybody, ’cause I’m the Queen of Denial.”  If you want to see her video, which is just wall-to-wall packed with cultural stereotypes  (somewhat embarrassing) but pretty funny, look here.   It would give Edward Said, author of Orientalism, an epileptic fit.

When I was an undergraduate at the University of Chicago, I took a graduate-level seminar in Cultural Anthropology.  There, they liked to throw around words like “hermeneutics.”  When I asked what that meant, the professor grew red in the face and told me that if I didn’t know, then I shouldn’t be asking.  Hmm.  Kind of like my mother’s favorite retort when I’d ask her what I’d done to deserve punishment:  “If you don’t know, then I’M certainly not going to tell you!

I don’t believe they knew what the word “hermeneutics” meant (it’s the theory of text interpretation, especially Biblical or scholarly).  I found out, though, quite by accident.  We were supposed to read Orientalism and write a paper on it to discuss in seminar.  So I read the book.  I thought it was a pompous, reverse-racist take on the “Western” ideas in art, music, film, and literature supposedly misrepresenting the Arab world.  But I have a nasty habit of reading footnotes and actually reading the original sources.  It takes a bit longer, but you can discover amazing things: like, for example, that the primary sources cited in the footnotes say something quite different than the author, in this case Said, made them out to be.

I brought a stack of these primary sources (we had libraries full of real books back then) to show my “hermeneutics” professor what I had found.  But oh dear, it seems I had shot a sacred cow!  For the sin of debunking Said’s theory by means of his own references (not to mention proving that he had committed a crime by misrepresenting the references as supporting his theory, when in fact they often said exactly the opposite of what he said they did), I was hauled before a tribunal (hauled before a tribunal!  I am not kidding you).  I was only a nobody undergraduate, but they didn’t want this accidental discovery of mine to get out.  I had to withdraw my paper and promise never to mention it again, if I wanted to get my degree from that venerable wellspring of hermeneutics.

Last week I wrote about the deplorable scene that erupted when I came out to my parents that I had been forced to resort to prostitution when I ran away from them at the age of 16.  So far, neither of them has asked me why I ran away.   I take that back: my father did once, when he thought he was dying, and I couldn’t bring myself to tell him.  I have wondered ever since if I did the right thing or not.  I tell myself that I didn’t want to distress him when he was so ill, but I really think it’s fear.  In fact, I know it’s fear.

The result of my revelation was a major catastrophic scene, blaming me for depriving them of their only child, and therefore I deserved whatever I got.  Not surprisingly, I had a major meltdown as a result of all that, and a flareup of physical symptoms as well as some serious PTSD flashbacks, nightmares, what have you.

I got an ugly email from my mother the next day, accusing me of accusing her of putting me out on the street to work as a prostitute (huh?), and of committing the crime of saying such things in the presence of my father, a “sick old man.”

Rather than engage with her and start a war, I rolled over like my dog does when she thinks she has done something bad, in appeasement, so I won’t scold her for peeing on the carpet.  I wrote her back and said I was sorry that she had perceived such things, that I never intended that she should perceive such things, and that I certainly never intended that she should perceive that I had accused her of such things.

Indeed, I did not roll over so far as to say that I was sorry if I hurt her or sorry to deprive her of her only child, etc., because those are delusions.  I am in no way sorry for crimes I did not commit.  I am in no way sorry that I read Said’s primary sources and exposed him as a liar, and I am in no way sorry that I came out and told my parents that I was forced to prostitute myself when I ran away from them.

Here’s what I am sorry for: I’m sorry that I don’t have the courage to tell them why I left.  I’m sorry that I don’t have the courage to face my mother and tell her that her screaming and her name-calling and her gaslighting and her growling “I can’t stand you” time and time again, drove me to the brink of suicide and I had to get out of there.  I’m sorry that I can’t tell her that for those reasons and more, I preferred to live on the street and get raped again and again.  At least that was an honest danger.

But everyone loves her.  Just today someone came to visit and was gushing about how sweet she is.  I had to get out of there.  Yes, I know that’s the way people with Narcissistic Personality Disorder operate.  They are just so sweet, such pillars of the community, such advocates for the underdog–on the outside.  But on the inside of the book, there’s a rat stinking.  A living lie that never gets past the door, and nobody is reading the footnotes.

And so, the day after the messy tribunal,  and after the non-apologetic apology, I was expecting the cold shoulder, the “silent treatment” as she likes to call it.  That’s what I can usually expect after an outburst of honesty. But wonder of wonders, she was just as cheerful and chipper as can be!  We can’t afford to actually deal with this, because I’m needed to help care for my dad, who is indeed a “sick old man.”  And it seems that we can’t afford the possible consequences of driving me away again with insults and gaslighting.  So I was spared the usual aftermath of a moment of honesty.  I can’t say it’s not a relief.  But I’m still spooky, waiting for the other shoe to fall.

So for now there is a lull in the action.  I’m debating whether to dive back into anonymity with this blog.  I’m terrified that sooner or later, she or one of her friends will find it and out me.  I mean, I’ve already outed myself, but I’m starting to regret it, because of the possible consequences.  I’m trying real hard to stay in the footnotes and not be afraid of the tribunal.  But I don’t know if I can hold out with this fear and tension much longer, because she hasn’t read the references, and wouldn’t believe them if she did.

On the other hand, what’s the price of living in fear?

Tears and Fears and Feeling Proud (thanks, Joni)

“Tears and fears and feeling proud

To say I love you, right out loud…”

Clouds, Joni Mitchell

As much as this song has been the soundtrack to my life, so much more now.  My father is failing, day by day.  His mind is eaten full of holes by dementia.  I see the desperation in my mother’s face and for once, I feel pity for her.  And I am frightened by her own lapses, forgetfulness that goes beyond the simple effects of stress and depression that accompany her own slow motion loss.  I wonder for myself, how will I navigate this mine field alone?  There is no choice.  Certainly when the time comes when both of them are completely disabled, I will be able to enlist others from the community.  There is hospice here.  My mother started it, over twenty years ago, because there wasn’t any.  Now it will be ironic to be making use of that service.

 

No one ever thinks that they will be disabled, let alone old and disabled.  So few people make plans for that “in case.”  And yet, as one of my medical school professors put it, those of us who are still walking around with all our limbs intact are only “temporarily able bodied.”  TABs, he called us, from his wheelchair.

 

One day, coming in the door from his day as a medical student, he tripped over the door sill and fell down.  The next day he fell down again.  He kept on falling until he went to see a neurologist and was diagnosed with Multiple Sclerosis.  He was a second year medical student.   He was 28 years old.

 

He did not quit med school, but kept on going, at first with crutches, then in a wheelchair.  He did his residency in Rehabilitation Medicine.  So when the newly paralyzed, the new amputee, the new stroke patient became frustrated and wanted to say, “But you don’t know what it’s like….!”, they had to shut their mouths and get on with their therapy, for there was Dr. Mitchell in his wheelchair, looking at them and saying nothing, for nothing needed to be said.

 

My father was an exercise freak, in his day; in fact, he still is.  Until he was 83 years old (he just turned 88), he rose every morning at six and did a half hour of cardio exercise and half an hour of weight lifting.  And then he would start his day of throwing around 100 pound sacks of clay and glaze materials, always busy doing something radically physical when not seated at his potter’s wheel turning out exquisite works of ceramic art.

 

Everything he used, he made himself, from small hand tools right down to the potter’s wheels themselves, up to the huge walk-in kilns.  If he needed something made of metal, he welded it.  If he needed something electrical, he wired it.  I grew up that way, too.  He taught me to take lack as a challenge to create.  If I wanted to make a lamp out of a piece of driftwood, I went down to the hardware store, got the pieces that would make a lamp, figured out how to splice wires (they are color coded, it’s not hard), and made a lamp.  I never knew that you “couldn’t” do anything.  It was a matter of not knowing how yet.

 

So to see my father now, standing precariously balanced on his feet, with his arms completely tangled in a sweater that he couldn’t figure out how to put on: well, I can’t even express my feelings of grief and loss and sadness for him as well as for me, because he has lost the man that he built from scratch, and he is cruelly aware of it.

 

He tries hard to be philosophical.  He has always been a philosopher.  He acknowledges that there is no point in fighting it–and then he resolves to do battle with it, and he does, for a moment…then he falls asleep, or becomes disoriented, or gets distracted; and it seems that he has lost yet another rung in the ladder that only ever seems to go down, anymore.

 

But I am proud of him, nonetheless, for trying.  He does get on his exercise bicycle every few days, and there he pedals for a few minutes, and sleeps for a few minutes, and goes back to pedaling.  I made him a seat belt out of a luggage strap, because one time he fell asleep on his bike and fell off and hit his head again, and was tangled up in the pedals and arm rests besides, and my mother had a time getting him out (I wasn’t there).  So now he is very careful to put on his seat belt, because if my mother catches him without it she will give him hell, and he will do almost anything to avoid that.

 

I admit that I am afraid that I too could end up like that.  And even though my mother does give him a hard time, she is there for him.  For me, it will be different.  I have little hope of having a partner, anymore.  So I would be in some kind of “home,” as they say euphemistically.  I don’t relish that idea.  It makes me think about premature endings.  Even worse, it makes me think of being helpless and at the mercy of strangers.  I try to envision Dr. Mitchell looking at my self pity with quiet amusement; then I think about the wife that he comes home to every night and the effect vaporizes.

 

I wish I had a better ending for this post.  I love to end my pieces with something snappy, but tonight, nothing comes up.  I will have to take yet another lesson from my father and when in doubt, just keep putting one foot in front of the other.