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?

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.

Bad Mother

So.

I talked to The Entitled Brat, I mean my son, today.

It came out that what he wants is A Real Mother, one that he can visit and smell cookies baking as he steps onto the welcoming front porch.  A place where he could always find me, from which I would never move.

He doesn’t want his mother to be a nomad, forever wandering about in her camper enjoying Nature, meeting other interesting nomads-by-choice, writing and photographing and living the rest of her life doing what makes her happy.

No.

He wants his mother to do what makes HIM happy.

And he’s willing to make life unpleasant for his mother, should she make the mistake of taking up an invitation to spend a holiday with him (and get thrown out, because her presence irks him).

He does not regret throwing me out at Thanksgiving.  The opposite: “he needed his space.”

Lovely readers, I have done everything in my power to help this 30 year old child have a happy life.

He doesn’t see it that way.

What he sees is that I moved him around too much, and holds that against me.

We did move three times. And for someone on the Autistic Spectrum that can be traumatic.  His father moved once, across town, when he was a child, and still can’t get over it.

You know, there are only so many times I can apologize for the way my life has gone and the way it has affected him.  And then, On The Spectrum (which he fiercely denies) or not, he’s got to take the reins and determine his own destiny.

Even if he does have…

A bad mother

I Feel Like A Jerk

Have you ever felt like a jerk?  Huh?  Have you?  Sure?  Noooo, not really!

Well, I do.  I feel like a total jerk.  It’s one of the manifestations of my complete and total discomfort with Who I Am.

Yes, and it’s part of the problem with being an Aspie.  Yes, I know I haven’t written about being an Aspie before.  That’s because I didn’t have a “formal diagnosis,” just a lingering suspicion buoyed up by results of countless online quizzes.

I have confronted my psychologist about this a number of times, and she has hemmed and hawed about it, and said things like, “Haven’t we been over this ground before” and “You know you are, so why do you need a formal diagnosis?”

DAMMIT, I NEED THE FORMAL DIAGNOSIS SO THAT WHEN I TOTALLY FUCK UP AND MISINTERPRET SOMEONE’S INTENTIONS, I CAN LOOK AT MYSELF AND INSTEAD OF FEELING LIKE A TOTAL JERK, I CAN SHRUG AND SAY, “I’M AN ASPIE, AND ASPIES OFTEN MISINTERPRET PEOPLE’S MEANING, THAT’S ALL.”

She doesn’t get it.  She is so awfully, awfully neurotypical, it’s starting to get on my nerves.

One of several reasons I feel like a jerk at this moment is that I have already actually been a jerk twice that I know of, just this week, and it’s only Wednesday; and I suspect that one of the jerkees might have outed me to another person whose esteem I value, thus spreading the jerkness high and low.

And still I hear Dr. What’s-Her-Name saying, a bit irritably, “You’ve got plenty of diagnoses already.  What do you want with another one?”

I want a reason for why I misunderstand people all the time, for why I’m so naive, for why I get taken in by people with ill intentions all the time, for why I never, ever, for one moment have felt like I belong on this planet.  THAT’S what I want.

I want this diagnosis to be formalized so that when I do some stupid thing for an Aspie reason, I can just go ahead and say to myself, “Well, there you go, being an Aspie again, you couldn’t have seen that one coming but please try not to do that one again.”

She can’t fathom why in the world having a diagnosis of Autistic Spectrum Disorder, NOS would be such a comfort to me.  I have tried to get her to understand:

VALIDATION, VALIDATION, VALIDATION.  Did I say it loud enough? 

No, probably not, because I can’t tell if she’s being sarcastic and saying yes, of course, I know you’re an Aspie, so why are we even having this conversation?  Or conversely, no, I don’t think you’re an Aspie, so why are you harping on this?

Ugh.  I don’t know why I have to fight for a formal diagnosis of the SINGLE MOST IMPORTANT ASPECT OF MY SELF-NESS of all.

Yes, I am bipolar, have ADD, PTSD, LMNOP alphabet soup…But the one thing that has given me my triumphs and caused the most pain is Asperger’s Syndrome.

Syndrome.  Not disorder, although it has served me up plenty of disorder.  Yep, we even talked all about the various types of miseries Asperger’s has got me into.

But really, I feel like a jerk, and I don’t even want to explain why.

The Power of Unconditional Love

Listen, I don’t pretend to be a perfect practitioner of unconditional love. I wish I was. My loved ones would have had such better lives, had I had any notion of what unconditional love could do.

For example, on July 20 I bought a skinny, sick, fearful dog, for a ridiculous sum of money. I was in a terrifically needy state, having lost my beloved dog Aress to a freak accident. I looked into this pitiful sick doggie’s soft brown eyes, paid the sum, and took her home.

It was clear that she had never been in a real house before. OK, I don’t really live in a “real house,” since I make my home in a fancy van. But it is undeniably a home, and it was clear that she had never been in one. She lived in a kennel outdoors, was taken out to train, and put back in her kennel. From her lamentable condition, it was also clear that nobody had ever paid much attention to her.

In the six or so weeks that I’ve had her, she’s become a sleek, happy pup who loves almost everybody except people she deems untrustworthy. This is her job, and she does it well. She’s affectionate to the point of occasional annoyance, since there are things that must be done (according to me), like writing, doing chores, paying bills…but to Atina, these are annoyances to her, for damn the torpedoes, the play must go on!

An old buddy of mine stopped by to camp for a few days (hi, pal, in case you’re reading this!). I showed him the picture of Atina when I first got her. You could count her ribs and all her vertebrae, and the bones of her pelvis stood out like a sick cow’s. Her coat was dull and ratty: so much so that I had her tested for mange.

My friend asked me how I had managed to rehabilitate her into the sleek, happy girl she is today. I shrugged.

“Love,” he said quietly. I nodded, tears stinging.

Although he gets furious when I bring up the topic and vigorously denies it, my son is a very high functioning autistic. He learned to speak before the age of one, and before that, he developed his own version of sign language. By 19 months he could count to 19, and by three he could tell you the names of every dinosaur known to man, where they had been discovered, and what they did, their diets, their habitats, and what era they lived in. By four he had taught himself to read and do basic arithmetic via “Reader Rabbit” and “Math Blaster” on our desktop Mac.

On the other hand, he hated anything to do with other children, refused to participate in preschool, and whenever possible isolated himself in corners, absorbed in a book or playing with his plastic dinosaurs or action figures. At three, he was already seeing a child psychologist. We managed to get through private kindergarten in five-minute segments. If he cooperated and sat in the circle with the rest of the children for five minutes, he got to go to his corner and be alone for fifteen minutes. Later in the year he discovered the school office and became enamored with the laminating machine, so he became more motivated to sit for five minutes so that he could run to the office and laminate for fifteen.

First grade was a bust, as far as the teacher was concerned. We enrolled him in a progressive Quaker school: small class size, emphasis on art and music, compassionate teachers–what could be better? Nothing, I guess. Literally nothing. My son staidly refused to cooperate with anything whatsoever. His teacher, a caring and earnest young man, could not get him to do anything. He retreated to a corner and refused to come out. Somehow he managed to ace all the tests, though. But he would not come out of his corner, nor would he speak a word. The teacher called me on a weekly basis.

“He refuses to participate. What shall I do?”

I was busy, harried, frustrated and sleep deprived, so my stock answer was, “You’re his teacher. YOU find a way.”

This did not work.

Finally I had a brainstorm: “Make him the class scribe. Give him a tape recorder, and have him sit just outside the class circle and record everything. This way he’ll feel like he’s got an important job and is not simply one of the (muggles, but that word had not yet been coined by Rowling).”

It worked. We managed to make it through first grade without any further conflict.

In later years, I experienced what happened when I tried to force my son into anxiety-producing behaviors using negative consequences. He either withdrew, or else he simply sat down on the floor and crossed his arms, earning him the nickname “Sitting Bull”. When he got older, he became threatening and intimidating. I was not about to knuckle under, so I upped the ante, and so did he. Soon a full-blown war was in progress.

Now, I don’t believe in accepting bad behavior, not even from a “special” child. But there are ways, and then there are ways.

My moment of epiphany dawned upon reading Karen Pryor’s amazing book, Don’t Shoot the Dog. Pryor was the head porpoise and Killer Whale trainer at Sea World for many years. Now, you can’t make a large sea mammal do anything it doesn’t want to do. You have to make doing the desired behavior so attractive, that said mammal would rather do it than just swim around and play, like porpoises like to do. You have to make it fun to do what you want them to do.

Pryor’s book, as its title implies, carries this philosophy over to dog training. At the time her book was published, most dog training was based on negative reinforcement: You don’t do what I want, you get your neck jerked, you get yelled at, you might even get hit with a rolled-up newspaper for doing your business where you’re not supposed to.

Pryor applied what she had learned as a sea-mammal trainer to dog training. Thus, lucky dogs found out that doing the desired behavior resulted in treats and praise, while negative behaviors got them…nothing. Ignored. Exactly what a social mammal desperately does not want.

Of course, psychology students already knew this from getting rats to do things that humans had a hard time with, by simply having a tasty treat at the end of the maze. But applying methods that worked with “lower life forms” to humans? How insulting. Humans ought to just know that what they were doing was good or bad. Adam and Eve, right? Tree of knowledge of Good and Evil, and stuff like that.

The Behaviorist School of Psychology, pioneered by B.F. Skinner, showed that positive behaviors rewarded with positive reinforcement produced more positive behaviors, while negative reinforcement inhibited negative behaviors. A third strategy was called “extinguishment.” You do what I want, you get left alone to do what you want. You don’t do what I want…nothing. The behavior “extinguishes,” for want of reaction. In many cases this worked better than negative consequences such as electric shocks. (N.B.: a rumor somehow began that Skinner experimented on his own child by placing her in a “sensory deprivation” cage. This is not true.)

Pryor capitalized on Skinner’s Behaviorist School of psychology and its “behavior shaping” model in her sea mammal training program. She then morphed it over to dog training…and concluded her book with a chapter on shaping the behavior of humans.

I can’t say that I ever mastered behavior shaping, either in dogs or in humans, but I have tried to incorporate it, when I remember.

What I’ve learned through the years, though, is to assimilate and practice the art of “Love the person, even if you hate the behavior.”

I have always loved my son, completely and passionately, even when I was dodging head-butts when bear-hugging him through an autistic melt-down, or once again leaving a cart full of groceries in the checkout line when all those people were just too much for him, or agonizing through the time he was in and out of countless outpatient and inpatient addiction programs as a teenager, or sitting up nights worrying when his stepmother threw him out and he lived in a drug house, on the street, in a homeless shelter, in a psychiatric ward zombied out on legal drugs.

Finally he got arrested, and this was my chance to save his life. I called the judge, whom I knew from my work with the court system (yes, this was taking advantage of my position), and begged him to remand my son to long-term inpatient care. The judge reprimanded me for calling him, but honored my request.

After a long period of searching, we found the perfect place. The students were held to a strict policy of personal accountability. Positive behaviors were rewarded with increased privileges; breaches of the rules resulted in suspension of free time, which was instead spent writing a paper examining the undesirable behavior, why the kid did it, what the internal meaning of the behavior was, and why this was counterproductive to the kid’s development as a productive, independent, successful individual. The student then presented the paper to a mentor, who helped process the ideas and helped the kid internalize them. There was still a consequence in terms of loss of privileges for a finite period, and a defined way to regain the lost privileges.

In this way the teens learned that self-determined productive behaviors resulted in more freedoms. In addition to these interventions, the kids had daily group therapy, thrice-weekly individual therapy, a staff mentor who was always available for processing issues, family therapy monthly, and many other interventions. It turned many lives around. It gave my son tools that he is still using, ten years later.

For me, it reinforced that the power of unconditional love moves mountains and saves lives.

Amen.

Don’t Make Any Noise And You Won’t Get Hurt

My policy on this blog is not to post trigger warnings; in this case, I make an exception.

If you are a survivor of sexual violence, think carefully about reading this post.  It contains graphic images of sexual predation, and could be triggering to anyone who has suffered sexual violence.  Please be careful.

Some of the following is included in my upcoming memoir, A Runaway Life, and in my novel-in-progress, The Beanbag Chair.  I’m sharing it with you here because I know that for every survivor of sexual violence who seeks treatment, there are untold numbers who don’t, and who live with the horror, shame, and destruction of the integrity of the self and the soul that sexual violence begets.

My first personal encounter with a Male-factor–as we used to call them during my tenure as expert examiner on child sexual abuse cases for a State District Attorney’s Office in a Northeastern state in America–was at age sixteen.

Earth Day, April 22, 1970.

I knew nothing about sex beyond veiled inferences gleaned from “Lady Chatterly’s Lover,” swiped from my parents’ library and read over and over, to try to figure out what all that language was referring to.  I had seen the heifers in heat mounting each other in the pasture next door, but had no idea what they were trying to accomplish.  I had no frame of reference.

I was sixteen.  My interests were Latin, natural science, poetry, music, and art.  At sixteen I was permitted to date, but the boys in the country backwater school I attended were either brutish dolts or eggheads like myself who tended to stay at home trying to teach themselves Greek.

My mother continued her perennial assault on my self-image via an uninterrupted stream of verbal, psychological, and sometimes physical abuse.  My depressions grew blacker, my desire for relief by any means more intense, until finally I despaired of ever finding truth in living, and debated within myself whether this life was actual reality, or perhaps was a construct by some demonic mind for whom I was a toy.

An older man I met in the burger joint where I worked on the weekends admired my legs and asked me for a date.  I was flattered.  Someone thought I was attractive.  I got my mother’s permission–she was thrilled–and I went with him.

The details of that date have been published elsewhere.

“Don’t make any noise and you won’t get hurt.”

I woke up to those words, still muzzy from the drug he had slipped me.  In the dark basement, his hand clamped over my mouth, my back squashed painfully into the cold concrete floor covered with moldy carpeting…..and the searing pain jolting through my body until at last he tore through, not through my hymen, but to the side of it, so that for many years I had not one but two openings there.  (At last in my 40’s I had the courage to take at least some of my body back, and had that part surgically removed.  Later I had a second surgery to try to repair the damage to the muscle between my vagina and my rectum, but that has mostly failed.)

After he finished with me, he bundled me back into his car and let me out in the dirt circle that stood in for my parents’ driveway, my blood soaking through my new spring coat.

That was my initiation into the cold, dark terrorism that is rape.  My virgin sex, shredded beyond repair.

I ran away from “home,” hoping to find relief, but ended up homeless, being raped when I asked for bread, for shelter, for medical care.

I look at the few pictures of myself from that time.  I was so young.  I looked thirteen at the most.  I had no figure, even though my mother’s pet name for me was “fat-ass.”  The eyes looking out of the delicate triangular face were hollow and haunted.

Fast forward two years, and I was living with a kind and honest couple who had taken an interest in helping me pull myself out of the life on the street.

The Viet Nam war was still raging, and I was a dedicated anti-war activist, a still-passionate Peacenik who believed that Good could triumph over Evil if only The People would shout it out loud enough.

Young Mr. Doctor-To-Be frequently managed to take time out from his medical studies at Boston University to help organize rallies.  We were Peace Rally Comrades, nothing more.

That time, I had incapacitating menstrual cramps in the midst of a rally on Boston Common.  The rally had such a huge turn-out that the riot cops were exercising their batons.  I was fainting and nauseous.  Mr. Not Yet Doctor fanned my sweaty face with his poster and proposed that we go to his apartment, where he had some medicine that would relieve my cramps.  Even though I had recently come off the streets, I did not doubt his intentions.  Have I told you that I’m Autistic?  I’m Autistic.  I can’t read intentions.

He half-carried me to his apartment.  I remember a dark stairwell, and being “helped” up the stairs.  I remember the small white bedroom with its unremarkable furnishings.  I remember being told to take off my panties and lie down.  I remember wondering why that was necessary, but he must certainly know because he was the Almost-Doctor.

I remember his voice as he hissed in my ear:

“Don’t make any noise and you won’t get hurt.”

He took something out of his shirt pocket: a penlight, such as all doctors have in their pockets.  I thought he was going to look at me with it, and froze.

He raped me with it, and as he did, he masturbated, and when he was finished he told me to go.

I climbed down from his bed, numb and bleeding, fumbled my way down the dark stairway and into the bright-white sunlight, dazed, blood running into my sandals, squish, squish.

I was in a part of Boston I had never seen before.  I managed to get home somehow, my long skirts hiding the blood.

Fast forward three years and many events less dramatic than those.

Irish flute master classes with a famous and now dead Irish flute master.  (NOT James Galway, thanks to G-d.  And NOT Cathal McConnell.)

One day he refused my payment for my lesson.  I thought that was odd, but did not understand the implications.  I Am Autistic.

He got his tween coat, and off we went to the Custom House Tap, where we played duets for Black-And-Tans until we were both solidly drunk.  He invited himself to my place for tea.  We had not even got off the sidewalk when it started.  This part I cannot write, for it is too triggering for me even to remember.  But I didn’t run away.  I was like a rabbit transfixed by the hard gaze of the wolf.  I went along.  I let him into my apartment.  It got worse.  Then it got horrible.  Then he left me, gagging and bleeding, and I never heard anything more from him.  Several years ago I went about trying to find his whereabouts.  No purpose in mind; I just wanted to know.

The obituary said he had drowned while taking a swim off his private dock in Martha’s Vineyard.  The pit of my stomach was cold: just as cold as that night that he rammed himself down my throat until I lost consciousness, waking choking on my own blood and his disgusting fluids.

Why do I wonder that it’s so hard to trust?  Why do I feel as if around every corner there is something huge waiting for me, a muddy black smudge beckoning, threatening to take me over and obliterate me again and again and again?

Why do I feel a terror of closed spaces, a dread of not being able to escape?  Why must I always have my back to a wall, facing the door, and know every escape route?

Why, when I think of being imprisoned, does the panic rise in my throat, and thoughts of suicide race through my head?

“Don’t make any noise and you won’t get hurt.”

 

 

The Honesty Tax Again

Ladies and Gentlemen, gentle readers: I adjure you to tread softly when you review books on any site where books are reviewed.

As most of you know, I am autistic.  I have little to no ability to soft-pedal, and no ability whatsoever to suck up to people, whether they are potential customers for something I might be selling on eBay, or whether they have written a book that has drawn accolades from well-known reviewers.

And so it was that, having bought a book from an online bookseller, having read that book, and having been asked by the bookseller to review it, I did so.

The book didn’t float my boat.  In my opinion, it lacked a good deal.  My review was much more reserved than my full-on opinion, but in the interest of giving the author a break and not putting potential readers off, I went easy.

It seems that my review wounded the author’s feelings, and he sent me a letter.  This surprised me.

I have never considered myself an important writer, and certainly not an important reviewer.

The letter I received from the author of said book made me wonder if I had morphed overnight into some lauded writer, whose “C+” review might actually mean something.

It accused me of everything from sullying the author’s reputation, to negatively affecting his income, to damaging his health.

Good grief!  The next thing, I fear, will be a letter from said author’s attorney, or worse yet, a summons of some kind.

Grief, grief, grief.

The reason I am sitting here in this barn–yes, I do mean barn, literally, not figuratively–is that fourteen years ago, I opened a registered letter.  It informed me that I was being sued for half a million dollars, and that I was summoned to a hearing in a far-away state.  I barely had the means to put beans on top of rice, not to mention traveling!

At that time, gentle readers, I had just lost my job; my child was desperately ill;  and I was already spiraling into the depths of a depression that was resistant to every antidepressant on the market, because it was a Bipolar Depression, which behaves differently from Major Depressive Disorder.  Antidepressants just make things worse.  The specter of ECT loomed on my horizon.  I fought it off with brooms, and cans and cans of Raid™.

That Registered Letter was the straw that catalyzed my first hospitalization.  But that did nothing to avert the rumble of the approaching juggernaut of the pending lawsuit.  Stomp, stomp, stomp, like a bad Japanese movie.  Only this was no movie.

All of the lawyers I contacted said the suit was a frivolous attempt by the plaintiff to gouge money out of hundreds of caregivers, and that I would certainly be exonerated, and could then file a countersuit for damages.The only thing was, the lawyers wanted a retainer of $25,000-$35,000 up front.  And I was penniless.

So I did the only thing I could do: I went bankrupt.  The few things of value I still had to my name went away in one horror-struck day.

I will never forget seeing the repossessors come and haul away the little car that I had used for work and house calls.  My big horse trailer went too.  Anything else of value was carried off in due time.  I was left sitting in a mostly empty single-wide trailer, on land that was thankfully untouchable by the vultures that swirled around my head.

Now that I am in fact homeless, I feel more at ease, because I don’t have anything to steal.  I don’t even have a reputation to feed and care for.  I am Just Me.

I no longer accept registered letters.  If it’s a check from Publisher’s Clearing House for a million dollars, I imagine they might call.  Or maybe not.  What does it matter?

At this point, my energy reserves are at their nadir.  I have just spent nearly four years helping my father to die, in great pain and suffering for both of us.  I’m happy that his suffering is over; and I must say that it is a great relief, as I feel very sure that he is in a good place and out of pain.  But it’s taken an enormous toll on my own resistance to diseases, physical and psychological.

The aforementioned author’s thinly veiled threatening letter has set off a cascade of paranoid thoughts: what would I do if he decided to sue me for….for….um, for honestly reviewing his book?  What has the world come to?

What would I do?

I am weary.  I don’t know how much more I can take.  There are times when I long to go up on some high mountaintop with a fifth of good single-malt, and drink it until I become numb, and let the bitter cold of the night take me Home.

And then I think: how well do I know the evils of this world!  But–what if there really is an Afterlife?  What if there really is a God, who gave us laws?  What if suicide is seen as murder, in that Other World?  Meh.  I just want This World to be over.

I am sick and tired of paying the Honesty Tax.

I wanna go Home.

 

My Magic Wand

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

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

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

“Your child has leukemia.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Whole Social Media Thing

To begin with, I can’t see sh*t.  That is because I got new glasses about a month ago, with the usual promise that “I will get used to them.”  Having worn glasses for 53 years, I do have some experience with that phenomenon.  These are wrong, and I’ve been round and round with the eye people about them, so until I get that straightened out (probably by forfeiting the $385 they cost me and going elsewhere), I have about a centimeter of lens in my left eye that I can actually see out of.  So if I make typos (horrors!) here, please forgive Little Miss Picky because she is mostly blind at the moment.

Social media: WordPress.  Facebook.  Twitter.  Google Hangouts.  Google Plus.  Or is it Google+?  I don’t care.  For some reason it infuriates me.  Perhaps it’s the feeling of chaos that overcomes me when I know for sure that I have no control whatsoever regarding what little groups, or big, or medium groups I get included in.  I’ve tried posting on Google+ that I don’t want to be included in it.  Of course that generated discussion, good-byes, and affirmations that people would respect my wishes.

Not.  I keep getting family photos, adorable pictures of the new baby sister, etc., all on Google+.  I don’t respond to any of it, so the way I know it was heaved in my general direction via Google+ is when I get an irate, or disappointed, or whatever negative emotional reaction, in my actual email inbox.

Other people try to send me stuff (or register their displeasure at my non-response to Google+) via Facebook.  I look at Facebook, oh, maybe once every two or three months, except when there is a war and then everyone in my country uses it to communicate so I am on several times a day.

Quiet returns, I’m no longer there.

Oh right, Skype.  F*ck Skype.  They send me all kinds of communications in I think Icelandish, by the look of it.  I don’t understand that language.  I do use Skype once or twice a year, but I sure as hell do not leave it open so that it can start ringing and disturb my train of thought.  Anyone who knows me well enough to Skype me knows my email address.  We can make an appointment.

Twitter.  Yeah, I’m sure it’s really useful, especially in times of war and natural disaster.  It’s just that, people, I am on the autistic spectrum and I just don’t care about most things.  I care about my family, my dog, my son especially, my ethnic group, the scary situation with the honeybees, the scary situation with the bats (another very important creature that most people don’t even know about), the bad things that are done to whales by our “Defense Department(s),” and other things I’m quite sure most other people don’t know about and might not care about even if they did know about them.  I do not give one shit or Shinola about my mother’s hellish cat.

So Twitter, unless there is a war or natural disaster that you want to keep up with, is just plain intrusive.  I finally figured out how to turn off audio notifications in my current flavor of Android (who the f*ck cares whether it’s “Ice Cream Soda” or “Strawberry Suppository”?).  They’re just trying to keep up with Apple’s infuriating system of naming their big operating systems after big cats.  Jeeezus K. Reist (thank you R. Crumb), not only do we have to figure out how to stop the effing Apple Store from taking over the whole damn computer, but in addition have to remember what CAT we’re running?  I HATE that.  “Hello, Applecare, there is black smoke coming out from under my keyboard.”  “Oh I’m sorry to hear that, are you running Leopard, Snow Leopard, or Abominable Snowman today?”  “There’s no such OS as Abominable Snowman.”  “Oh yes ma’am, you’re right, I was just fucking with your head.  Now how may I help you today?”  (I discreetly send reverse amplification to their dumb and dumber terminal, causing a chain reaction on their side that blows every circuit in their personal MacBook Pro Titanium, and also gives them a hell of a toothache.

So.  No, Twitter gives me a headache.  Use my email if you want to talk to me, OK?

There’s an email in my right sidebar.  You’re welcome and encouraged to use it!  And of course I fastidiously monitor and respond to comments on my blogs!  That’s where I really feel there is a personal connection.  It’s great for people on the Autistic Spectrum, because you can interact on a personal level without ever having to do air kisses, or hug people you don’t know, or try to avoid people crushing your arthritic hands in their “firm handshake,” or smelling their idea of perfume that makes you gag, or making eye contact for any reason.  Right.  It is a panacea for all of the threatening forms of social intercourse, while opening space for actual exchange of ideas and, yes, emotion, Dr. Spock.

In the meantime, well….there really isn’t any meantime, since you’ve already read all about it above!

Love yas all, peace…..

Daily Prompt: Verbal Ticks

Thank you, Ben Huberman.  I really needed a larf, and Huberman’s  Daily Prompt has got me rolling on the floor: “Verbal Ticks.”

Do you have a “verbal tick” you can’t get rid of?  Does it bury its head in your skin, suck your blood, and give you Lyme Disease, all the while chattering away like a demented dummy?

Ben, darling, I really am not dissing you.  It’s just that I’m a compulsive editor/proofreader with a cranked sense of humor.  I would have left you a comment in the “comments” section on your post, but there doesn’t seem to be one on the Daily Prompt, and if there is, I couldn’t find it.  My bad.

The word you wanted was tic.  A verbal tic is a vocalization, whether recognizable or not, that builds up inside the sufferer’s mind/body with increasing pressure until it exits, one way or another.  It’s a common feature of Tourette Syndrome.

I heard of a lawyer with Tourette’s whose main tic was verbal.  His brain compelled him to utter foul curses!  Most of the time he was able to blend them into a faked cough, but occasionally he had to exit the courtroom in order to drain himself of curses!  The judges all knew of his disability and made accommodations for his needs.

So now I’ve had my larf at the expense of our dear Ben, and it really is bedtime; but I will have to distract my mind, perhaps by watching Betty Boop cartoons, lest my dream be populated with chattering blood-sucking arthropods.