Shame

While I’m waiting for this case of flu to blow over, I may as well write something.

I had a dreadful experience in the Land of Cleve, which I will write about as soon as I get un-triggered enough to be capable of writing more than ba-ba-baaaa-baba-baaaaa…see what I mean?

And the root of it all is shame.

Shame that after surviving a childhood of violence, confusion, loneliness, and fear, surviving rape, prostitution, homelessness, and fear, pulling it together and getting successful in art, music, and medicine, shame that after all those shooting star successful years, I’m still broken, more broken even than before.

Shame that at the age of 63 I am homeless.

Don’t think for a moment that my fancy camper van and my (to quote my dear mother) “fat disability check” means I am not homeless.

“Don’t say homeless, say house-free,” sage advice from just another such as me.

Don’t believe it.

I know what it’s like to have a home.  I’ve had them, from time to time.  They just don’t stick.

I can’t stay anywhere, because she will find me.  She will drag me out from under the bed where I am hiding…so I have to move.  I have to run.

I can’t stay anywhere, because he will hit on me, he will sell me to his friends while I am knocked out on Angel Dust that he put in my joint…I can’t stay here, because the cops will find me.  You don’t have to be pretty for the cops to like to play with you but it helps, sometimes in a good way and sometimes not…

Such a shame, she’s got all these degrees and doesn’t use them, just sits on her ass all day….

Shame can drive you to despair, makes you want to disappear, but where?

If I were well, I’d go back to work

Settle down

Volunteer

Publish my books

Find some friends

Get a life

If I were well, there’s a lot I could do.

Now it has to be good enough just to deal with the stares.

Yes, it’s that bad.  I try to fix myself up so I don’t look so crazy as all that, but lately (I think it’s the limp now, from the sciatica, it’s killing me) I’m noticing…maybe I should buy some new clothes.  I hate throwing out perfectly good clothes.  OK, they have holes, and when you live outside, you’re bound to get dirty.  

Maybe I should cut my hair.  Even when I braid it, it ends up all wispy and wild.

Maybe I should….

I hope this doesn’t last too much longer.  

Red Flag Warning

image

Here on the shores of Lake Michigan, at a state park right on the dunes, all is peaceful after a line of thunderstorms whipped the lake into a froth of foamy breakers.

image

As each five-foot wave recedes, it takes with it a hiss of sand that whisperes: “Riptide, Riptide….” that terrible current that will suck the sand from under your feet, sweep you up and before you know it, you’re bobbing around beyond the surf line, wondering how you got there.

A red flag with a “No Swimming” symbol on it cracks in the wind at the top of the flagpole.  Parents watch their children playing in the undertow, arms folded, chatting.  I bite my tongue, wanting to run and shake them and point to the red flag. 

The past few weeks have been frightening.  I’ve been swimming through the cloudy seas of dissociation since….well, ever since I turned my back on the beautiful West, where I feel grounded and relaxed.  That’s been a while.  Since the end of June, I think.  I remember it was beastly hot in Northern Arizona.  I came through Colorado, a lovely cool break, and headed for Michigan, where I picked up my new rig and camped in Michigan’s Upper Peninsula before schlepping all the way to North Carolina to get it registered there.

It was on my way back, via West Virginia and Virginia, that I realized I could only drive a couple of hours a day before becoming completely exhausted and having to stop for the night before mid-afternoon.

This is crazy.  I’m one of those fanatics that likes to see if I can break my own long distance driving records (that is, if I really want to get somewhere rather than noodling along enjoying the scenery).  I wanted to get back to the West, to high altitude, to the beautiful mountains and forests of conifers with their resinous fragrance.

I’ve been having bouts of exhaustion that come and go, for years now.  But this was beyond anything I have ever experienced.  I felt as if I were struggling with all my might just to hold on in the same place, as if some force were dragging me down.  The stifling humid heat.  That has something to do with it.  Any heat, anything warmer than 80°F, totally wears me out.  Add humidity, and I’m body slammed.  Can’t move.

I’ve been having spells of extreme muscle weakness, muscle wasting despite living outdoors…hard to do.  Muscles going into spasm, cramping up, having to stop whatever I’m doing to wait for the cramp to ease up.  My life.

I decided to make a stop at the Cleveland Clinic, to check this out

Like most medical encounters, this one involved several hours in the MRI scanner, many tubes of blood, referrals on to other departments, and I think by the time I get finished it will already be winter.

Since I had a few days in between appointments, I came up to Michigan to enjoy the late summer peace and quiet of the State Parks.
………………………….

I remember another day, in 1992.  A bright blue day on the island of Maui.  My Pediatric Trauma conference had happily chosen the beautiful town of Lahaina as our meeting place.  The conference venue itself turned out to be a sprawling 1960’s vintage resort with a golf course, etc., beach frontage, etc., and it cost a bloody fortune.  I booked a room in a Colonial era inn, graciously furnished, with a crystal clear swimming pool lined with handmade ceramic tiles–and at half the price of the awful resort. I was an habitual swimmer back then: I put in an hour every morning before getting my son up and off to school.  Thank God.

In those days I did not know I was bipolar.  All I knew was that I always felt restless and jittery, and was often depressed and sometimes suicidal.  I managed all of this-not very well-by exercising to the point of exhaustion every day, often swimming, running, weightlifting, and dancing in the course of 24 hours.  Sleep was an infrequent visitor.

So I swam in the beautiful pool in Lahaina, and took my spare suit to my conference meetings in my backpack, to swim in the resort pool at the lunch break.

Our Big Social Event for that meeting was to be a Real Hawaiian Luau (groan).  I was disappointed in the organizers’ cultural insensitivity (tourist attraction: Hawaiians!).  Maybe it was that I had just completed my Master’s Degree in Cultural Anthropology a few years earlier.  But it was the big networking opportunity of the year: attendance essential.

I arrived at the conference center’s private mile of beach a couple of hours before the luau was to begin.  I wanted to savor some solitary beachcombing while the other attendees were out with their golf and tennis.

Red flags whipped and snapped in the stiff breeze that churned the tall breakers into foam as they thundered onto the beach.  There was a storm in the South Pacific, but here in Hawaii the sky was a dark blue crystal dome.

I mostly grew up by the sea in New England, where the people and the waters can get downright crusty.  I took a look at the waves and decided that swimming was out of the question; so I shifted my shell collecting mission to the highest tide mark, a span of dried and decaying sea-leavings far up the beach.

The sun hung low over the western horizon, glaring straight into my eyes.  I put on my brand new $100 Bollé shades…my first expensive purchase “just for me” since landing the new job.  Ah, they fit perfectly.  Now to find the ultimate cowrie shell!

A cloud covered the sun.

A very sudden cloud!  Perhaps the storm…I looked up from my shelling.

I just had time to grab a breath and clap my hands over my brand new sunglasses when the wave, towering at least three times my height, crashed down on me.

Years of martial arts training saved my life then.  My body instinctively became liquid.  I went with the wave, flowing with it.  I knew if I fought, it would break me.  The wave had the force of the whole Pacific Ocean behind it.  I made like the seaweed that flows and floats and survives.

I tucked into a ball.  The sea bounced me across its floor.  I still hung on to those glasses.  If I was going to die, it would be with my new shades on!

At last, an eternity later, I bobbed up to the surface and gulped air.  I looked around in astonishment: I had come up behind the surf line, out where the boats were moored.

The swells were huge.  It felt as if I were floating up the sides of mountains, sliding into valleys.

Worse, so were the giant catamarans that took people on whale watching tours…hundreds of people at a time.  They bucked like gigantic steeds against their mooring ropes, their bows rising, enormous pontoons clear of the water, then crashing again as the rollers went by…

All around me, these juggernauts strained at their ropes, sending sheets of water over me with each crash so that it seemed every moment I was blinded again.

I finally drew a bead on the shore and struck out for it, body surfing whenever I could to conserve energy.  I swam up the back side of the waves and surfed down the front, over and over and over…why did the shore seem no closer than before?

The tide was going out, is why.  And it was taking me with it.

I swam harder, finally got to where I could touch bottom, and ran like hell for the beach.  But just as I reached knee high, my legs were sucked out from under me, and the sky clouded over once more…I grabbed a breath, and my glasses, and crash….I collapsed, rolled into a ball, bounced across the sea floor, and came up, an eternity later, right between the pontoons of a sea-going catamaran…about to crash right over my head!  I dived, and the shock of the boat crashing into the trough of the wave sent me rolling again, but this time to my advantage, as I was a few waves closer to the beach.  I started again, strong but pacing myself, knowing that I could get free of this rip current by swimming parallel to the beach…if only I knew how wide the current was!  It could be miles wide.  And I couldn’t afford to get caught in the shallows where the waves breaking would break me too…

I reached the beach and dragged myself through the sucking sand.  There it is!  The beach!  I was there.

Then the sun went out again…

This happened five times.  I lost hope of actually living through this thing.  The sea had a bead on my life, but I refused to go down without fighting to the last.

After the fifth wave, I caught a good one in to shore.  I rode it as far as the knee deep mark, hit the sand running and ran right up the beach to the hotel sidewalk and kept running until I hit the pool, where I floated on the calm water and washed the sand out of my hair, my boobs, my butt crack…my teeth…

I wondered that I was still alive.  Or if I was still alive.  Maybe I only thought I was alive, like those ghosts you hear of that don’t know they’re dead yet…why would I have been alive?

And I still had my expensive sunglasses.  Maybe that’s what saved me: I was damned if the sea was going to get my Bollés!

My waterproof geeky Casio calculator watch said it was time to go to the luau.  I dragged myself out of the pool and threw on shorts and Hawaiian shirt from my rental car.

By this time I was feeling it.

But if you’re a Pediatric Trauma specialist, you ain’t allowed to feel.  So you just open that gate and walk into that courtyard with the kitschy tiki lights and the very decent Hawaiian band and the luscious brown dancers with the coconut shells over their boobs….you eat the poi and the pig…doing battle with the sea is hungry work.

Red Flag Warning

image

Here on the shores of Lake Michigan, at a state park right on the dunes, all is peaceful after a line of thunderstorms whipped the lake into a froth of foamy breakers.

image

As each five-foot wave recedea, it takes with it a hiss of sand that whisperes: “Riptide, Riptide….” that terrible current that will suck the sand from under your feet, sweep you up and before you know it, you’re bobbing around beyond the surf line, wondering how you got there.

A red flag with a “No Swimming” symbol on it cracks in the wind at the top of the flagpole.  Parents watch their children playing in the undertow, arms folded, chatting.  I bite my tongue, wanting to run and shake them and point to the red flag. 

The past few weeks have been frightening.  I’ve been swimming through the cloudy seas of dissociation since….well, ever since I turned my back on the beautiful West, where I feel grounded and relaxed.  That’s been a while.  Since the end of June, I think.  I remember it was beastly hot in Northern Arizona.  I came through Colorado, a lovely cool break, and headed for Michigan, where I picked up my new rig and camped in Michigan’s Upper Peninsula before schlepping all the way to North Carolina to get it registered there.

It was on my way back, via West Virginia and Virginia, that I realized I could only drive a couple of hours a day before becoming completely exhausted and having to stop for the night before mid-afternoon.

This is crazy.  I’m one of those fanatics that likes to see if I can break my own long distance driving records (that is, if I really want to get somewhere rather than noodling along enjoying the scenery).  I wanted to get back to the West, to high altitude, to the beautiful mountains and forests of conifers with their resinous fragrance.

I’ve been having bouts of exhaustion that come and go, for years now.  But this was beyond anything I have ever experienced.  I felt as if I were struggling with all my might just to hold on in the same place, as if some force were dragging me down.  The stifling humid heat.  That has something to do with it.  Any heat, anything warmer than 80°F, totally wears me out.  Add humidity, and I’m body slammed.  Can’t move.

I’ve been having spells of extreme muscle weakness, muscle wasting despite living outdoors…hard to do.  Muscles going into spasm, cramping up, having to stop whatever I’m doing to wait for the cramp to ease up.  My life.

I decided to make a stop at the Cleveland Clinic, to check this out

Like most medical encounters, this one involved several hours in the MRI scanner, many tubes of blood, referrals on to other departments, and I think by the time I get finished it will already be winter.

Since I had a few days in between appointments, I came up to Michigan to enjoy the late summer peace and quiet of the State Parks.
………………………….

I remember another day, in 1992.  A bright blue day on Maui.  My Pediatric Trauma conference had happily chosen the beautiful town of Lahaina as our meeting place.  The conference venue itself turned out to be a 1960’s vintage resort with a golf course, etc., beach frontage, etc., and cost a fortune.  For much less, I booked a room in a Colonial era inn, graciously furnished, with a crystal clear swimming pool lined with handmade ceramic tiles.  I was an habitual swimmer then: I put in an hour every morning before getting my son up and off to school. 

In those days I did not know I was bipolar.  All I knew was that I always felt restless and jittery, and was often depressed and sometimes suicidal.  I managed all of this-not very well-by exercising to the point of exhaustion every day, often swimming, running, weightlifting, and dancing in the course of 24 hours.  Sleep was an infrequent visitor.

So I swam in the beautiful pool in Lahaina, and took my spare suit to my conference meetings in my backpack, to swim at the lunch break.

Our Big Social Event for that meeting was to be a Real Hawaiian Luau (groan).  I was disappointed in the organizers’ cultural insensitivity (tourist attraction: Hawaiians!).  Maybe it was that I had just completed my Master’s Degree in Cultural Anthropology a few years earlier.  But it was the big networking opportunity of the year, so attend I must.

I arrived at the conference center’s beach a couple of hours before the luau was to begin.  I wanted to savor some beach time alone while the other attendees were out with their golf and tennis.

Red flags whipped and snapped in the stiff breeze that whipped the tall breakers into foam as they thundered onto the beach.  There was a storm in the Pacific somewhere to the south, although here in Hawaii the sky was a dark blue crystal dome.

I mostly grew up by the sea in New England, where the people and the waters can get downright crusty.  I took a look at the waves and decided that swimming was out of the question; so I shifted my shell collecting mission to the highest tide mark, a span of dried and decaying sea-leavings far up the beach.

The sun hung low over the western horizon, glaring straight into my eyes.  I put on my brand new $100 Bollé shades…my first expensive purchase “just for me” since landing the new job.  Ah, they fit perfectly.  Now to find the ultimate cowrie shell!

A cloud covered the sun.

A very sudden cloud!  Perhaps the storm…I looked up from my shelling.

I just had time to grab a breath and clap my hands over my brand new sunglasses when the wave, towering at least three times my height, crashed down on me.

Years of martial arts training saved my life then.  My body instinctively became liquid.  I went with the wave, flowing with it.  I knew if I fought, it would break me.  The wave had the force of the whole Pacific Ocean behind it; I made like the seaweed that flows and floats and survives.

I tucked into a ball.  The sea bounced me across its floor.  I still hung on to those glasses.  If I was going to die, it would be with my new shades on!

At last, an eternity later, I bobbed up to the surface and gulped air.  I looked around in astonishment: I had come up behind the surf line, out where the boats were moored.

The swells were huge.  It felt as if I were floating up the sides of mountains, sliding into valleys.

Worse, so were the giant catamarans that took people on whale watching tours…hundreds of people at a time.  They bucked like gigantic steeds against their mooring ropes, their bows rising, enormous pontoons clear of the water, then crashing again as the rollers went by…

All around me, these juggernauts strained at their ropes, sending sheets of water over me with each crash so that it seemed every moment I was blinded again.

I finally drew a bead on the shore and struck out for it, body surfing whenever I could to conserve energy.  I swam up the back side of the waves and surfed down the front, over and over and over…why did the shore seem no closer than before?

The tide was going out, is why.  And it was taking me with it.

I swam harder, finally got to where I could touch bottom, and ran like hell for the beach.  But just as I reached knee high, my legs were sucked out from under me, and the sky clouded over once more…I grabbed a breath, my glasses, and crash….I collapsed, rolled into a ball, bounced across the sea floor, and came up, an eternity later, right between the pontoons of a sea-going catamaran…about to crash right over my head!  I dived, and the shock of the boat crashing into the trough of the wave sent me rolling again, but this time to my advantage, as I was a few waves closer to the beach.  I started again, strong but pacing myself, knowing that I could get free of this rip current by swimming parallel to the beach…if only I knew how wide the current was!  It could be miles wide.  And I couldn’t afford to get caught in the shallows where the waves breaking would break me too…

I reached the beach and dragged myself through the sucking sand.  There it is!  The beach!  I was there.

Then the sun went out again…

This happened five times.  I lost hope of actually living through this thing.  The sea had a bead on my life, but I refused to go down without fighting to the last.

After the fifth wave, I caught a good one in to shore.  I rode it as far as the knee deep mark, hit the sand running and ran right up the beach to the hotel sidewalk and kept running until I hit the pool, where I floated on the calm water and washed the sand out of my hair, my boobs, my butt crack…my teeth…

I wondered that I was still alive.  Or if I was still alive.  Maybe I only thought I was alive, like those ghosts you hear of that don’t know they’re dead yet…why would I have been alive?

And I still had my expensive sunglasses.  Maybe that’s what saved me: I was damned if the sea was going to get my Bollés!

My waterproof geeky Casio calculator watch said it was time to go to the luau.  I dragged myself out of the pool and threw on shorts and Hawaiian shirt from my rental car.

By this time I was feeling it.

But if you’re a Pediatric Trauma specialist, you ain’t allowed to feel.  So you just open that gate and walk into that courtyard with the kitschy tiki lights and the very decent Hawaiian band and the luscious brown dancers with the coconut shells over their boobs….you eat the poi and the pig…doing battle with the sea is hungry work.

New Black Box Warnings: FDA

I have a hell of a toothache.  A couple of months ago I broke a tooth, and went to a franchise-type dentist who took emergency cases.  One of the down sides of being a professional vagrant is I don’t have a regular dentist. 

For a little over $1000 I walked out with a new crown and instructions to call if I had any problems.

I did have a problem, before I even left the office.

I felt that I should have had a root canal before the crown went on.  I know my teeth.  They are ornery, pesky things.  They operate in strict accordance with Murphy’s Law:  anything that can go wrong, will go wrong. 

The dentist assured me that the nerve looked fine, and he hated to mess up a basically healthy tooth.

A couple days later, the thing started hurting like a sonovabitch.  I called the dentist, who immediately assumed I was a drug seeker and blew me off, saying that it might take a few weeks to settle down.

It hasn’t.  In fact, it’s getting worse.  Now I have to look for a dentist who will…but wait, it’s Labor Day Weekend!  No dentist till next week, when I have to run up to Michigan to get some warrantee work done on the old brand new RV.  Maybe I’ll find a dentist there, with a lot of luck.

So, in order to buy some time and have at least a few hours out of misery, I took two of my hoarded tramadol tabs.  Now I have maybe 20 left.

Then I opened my email, to find a bulletin regarding a new FDA policy, intended to protect ourselves from ourselves:  black box warnings on both opioids and benzodiazepines, warning that they must not…Black Box MUST NOT…be taken together, because of the potential of respiratory depression leading to death.

A Black Box warning is the strongest labeling there is.  This means that in a time when even being prescribed pain medicine is becoming a remote possibility, those of us who take benzos for anxiety disorders and/or movement disorders, seizure disorders, or insomnia, will have an even more difficult time obtaining effective pain management.  Doctors who prescribe both meds at the same time will open themselves up for censure and lawsuits.  Pharmacists are being given increasing power to simply refuse to fill prescriptions.  They don’t have to, and if the FDA issues black box warnings, they are fully within their rights to refuse to fill prescription A if the patient is known to be taking prescription B.  In fact, if they do fill it and the patient has an adverse effect, the pharmacist is liable, can lose their license, and can be sued.

This is of direct concern to me.  My neurosychiatrist, who unfortunately has retired due to failed back surgery, hammered out a drug cocktail during the course of our 12 year clinical relationship, that effectively treats my bipolar, PTSD, and social phobia.  It includes 3 types of benzos.  All at once.

It also helps with the muscle spasms that cripple me day and night.

Now I fear that when my prescriptions run low, I won’t be able to find anyone to prescribe these lifesaving medicines because they are “too much.”

Worse, the degeneration of my spine is getting to a critical point.  One of the bones in my neck is rotating in such a way that it is pressing against my spinal cord.  I’m going to need surgery soon.  Major surgery, to fuse three of my cervical vertebrae and lift them up off the nerves they’re pressing on.

I won’t describe the surgery, because it makes me sick even to think about it.  I’ll just say that it involves lots of chopping up bone and remodeling.  Very, very painful stuff.

So…in today’s anti-pain med climate, what’ll it be?  Black Box Warning ahead!  Do I get to continue my benzo regimen so I can maintain a semblance of normalcy, and not be a hypervigilant mess, or do I get a modicum of pain relief after having this spinal carpentry fest?  Do I have any say in this matter?

Last time I had spine surgery, I got sent home with zero pain meds.  None.  And that was in 1987!

Why on earth did this happen?

Because I happened to joke to the pre-op nurse who was taking down my then very short med list (one med!) that I took Xanax for the three days before my periods, and that I was addicted to not having PMS.  She wrote down that I was addicted to Xanax!  It was recorded in my chart that I had admitted to being a drug addict.  So when I called the hospital to ask for some kind of postoperative pain relief, the neurosurgery intern scolded me about being a drug addict seeking drugs.  No pain meds.  And that was a relatively minor procedure, compared to the one I’m facing.

I really don’t know what to do.  Sometimes I wish I’d just die in my sleep, so I wouldn’t have to face this surgery and the prospect of being helpless, in agony, without the possibility of comfort.

Already This Morning

I woke up with a shart.

Not exactly woke up with, but soon after.

…In the middle of the first cup of coffee I’ve had in days.

Lying in bed, dallying with my 35 year old, much loved, many times broken and repaired porcelain coffee cup, made special for me by my dear departed daddy-o, sipping strong Cafe Bustelo made in my simple Melita single cup red plastic drip cone.  Very strong.

It began the way most farts begin.  But it didn’t stop there.

Fortunate that I had my favorite lounge pants on, and that they are black, and that I have a handy clothes pole in my rig where they now hang, dripping dry after a wash-out in the bathroom sink.

I am disappointed.  This morning bulges with plans unfulfilled.  It was to be the second in a series of unparalleled good days. 

Yesterday, I wasted about two weeks worth of energy that I didn’t have, but took a mortgage on my future and went ahead with something wasteful in every way.

I have held off writing about this whole balagan (Hebrew for “wretched mess”) with the cardiologist, simply because it’s too boring to think about, and certainly too boring to write about.  I’m feeling sleepy.

B’kitsur (in short): I have been experiencing episodes of inflammation in my veins, on and off for a year.  Since I must have the torn cartilage in my left wrist surgically repaired, it is now relevant to discover whether this vein issue presents any additional surgical risk.  I was sent to a cardiologist who supposedly specializes in veins, to find out.

This cardiologist did not seem at all interested in my veins or anything else.  Oh yes: he is interested in tests.  Every kind of test that is high tech and expensive, he is interested in.  I believe he might be a little bit interested in money, too.

Last week I endured three kinds of cardiac echo tests, performed by a male technologist whose pinky finger seemed to be using my bare left nipple as a place marker as he worked the echo probe on my heart; at least I hope that is what he was doing.  It hugely triggered my rape survivor PTSD, and I dissociated, leaving him alone with my left nipple.

The next part of the balagan was a stress echo, where they do a regular echocardiogram, then hook you up to a 12-lead EKG (they hook you up real good: instead of merely slapping the sticky EKG leads on, they first scrub you down with alcohol and then sandpaper your skin without asking first whether it’s OK or whether you have any skin conditions, then they stick the leads on your abraded skin without looking to see whether you’re already bleeding) and put you on a treadmill.  You take two or three steps at a normal pace, then suddenly and without warning, they turn up both the pace and the angle, so that you have to trot to keep up; and suddenly your legs feel like they’re going to fall right off and you tell them that; so instead of simply slowing the treadmill down, they stop it suddenly, so you DO fall down.  Then they drag you bodily onto the echo table and do the “post exercise” scan, which of course is invalid because your heart rate didn’t reach the target 85% of maximum.  Shit, I could have told them that.

Now, you must understand that this represents all of what I hate in modern medicine.  Not all.  That comes later.  Most.

Thing One:  This test should have been scuttled.  Medicare should never have been billed for an inadequate exam.  It’s like billing for a blood test where the quantity was not sufficient to test.  And yet it was billed.  Is this fraud, or merely bad practice?  I’m thinking.

Thing two:  When I saw the cardiologist in follow-up for this inadequate test, he never really questioned why I was unable to exercise, even though I have been complaining and complaining and complaining of exercise intolerance to anyone and EVERYONE, including himself. 

Instead of talking this through with me, he went ahead and ordered a NUCLEAR stress test.  NUCLEAR!

How effing much are they billing Medicare for that one?  Cheeziz K. Reist** on a bicycle, I can’t even imagine.  4K?  At least.  With whipped cream and a cherry on top.  No nuts, thank you, they get in my teeth.

The nuclear balagan began yesterday afternoon, following the first decent morning I’ve had in weeks.  The heat has killed my already overheated constitution.  My weight is plummeting, since anything heavier than clear liquids leads to hours of belly pain and retching.

So it stands to reason that on the first morning that I pop out of bed at 0630 feeling rested and ready to engage with the world, I must fast, because fast I must if I am to get this nuclear test behind me.

So I fritter the day away drinking sugary liquids so I won’t get any more hypoglycemic than I already am.  I check my pup into an air conditioned kennel at the vet for the afternoon, and check myself into the diagnostic cardiology lab again.

I am relieved to find that the tech with the heat-seeking pinky has been replaced with a robot who scores very high on the Spectrum, but behaves well and doesn’t give me any shit about using the special tape I brought to secure the IV: special tape that does not rip my skin off.  He gets the IV in on the first try, painlessly, in my only good vein.  I love him.

I’m injected with Technetium 99, the radioactive isotope that the gamma camera will read, to make pictures of my heart at rest.  I’m given my first Chinese Water Torture huge cup of water to gulp, which expands my circulating blood volume.  They want to get the isotope into my heart muscle and cardiac vessels.

The gamma camera scanner is claustrophobic and cold.  I dissociate.

Next thing is the injection through the IV of some stuff that dilates all of my blood vessels very suddenly.  It’s a good thing I’m lying down already, since my blood pressure plummets from 130/85 to 90/60, which is officially the territory of circulatory shock.  It felt very weird.  I decided not to dissociate for a bit, knowing that I could at any time.  I kind of dug feeling how it felt, the weirdness of it all.  I stayed present for it.

Now they wanted me to eat a high fat snack, to help open up my circulation and get things running.  Fortunately I had just such a thing in my backpack.  They did have snacks there, but all of them contained gluten.  That’s why I always bring my own food, anywhere and everywhere.  You can never tell.

After another giant cup of water and two radioactive trips to the bathroom, I went back into the scanner, this time with leads on.  The EKG would coordinate the camera to pick up on the various phases of contraction and relaxation of my heart. Cool.

So that’s done.  Very nice.  Except for the couple of PVC’s (Premature Ventricular Contractions) that I had, which are nonspecific and most likely benign, I am sure that this will be a normal study.

And I think I remember signing a “Medicare balance billing” agreement, which means that anything Medicare doesn’t pay for, I get to pay for. 

Worse, this whole balagan has snowballed from: why does this person have recurrent vein inflammation? into a whole high tech cardiac workup.

Medicine has got itself into a very sad situation. 

I’m crushed to see my formerly noble profession sink so low.

I remember babbling to the tech who did the vasodilating torture test (they swapped him out for the robot for this part), about how any doctor who knew her salt could do everything she needed with a stethoscope, an otoscope, ophthalmoscope, tuning fork, some straight pins, and a few basic lab tests, five working senses, and a working sixth sense.  Your basic Black Bag.

He said yeah, I know, right?  That’s what they do in the third world.

I’m like, yeah, right?  What are you gonna do when the grid goes down?

Meanwhile back at the low tech ranch, I’ve been forcing myself to stay inside my body when I’m out walking The Doggess.  It’s been worthwhile.

I notice that while I do get out of breath, the limiting factor is that after a few minutes both my thighs and my calves start to feel like wood.  If I don’t slow down or stop for a few minutes, my legs just absolutely stop me.  I just can’t go no further.  Nothing doing.

And so [n.b., one is never to begin a sentence with “and so”], what is your diagnosis, Doctor?  (Physician, heal thyself…if you can tell me who said that, you get a prize!) 

Hie thee to the medical literature.  Ah, there ’tis!  What ill manner of bodily curse is’t?  Fie, Doctor!  Take it off me now!  What, cans’t?  Nay.

It is: Neural claudication.

“Claudication” happens when, for one reason or another, arteries experience spasms in response to increased oxygen demands, such as exercise or digestion.  When this affects the heart, we use the term angina.  When speaking of arteries downstream from the heart, such as the legs or abdominal arteries, we say claudication.

The most common cause of claudication is atherosclerosis, and the most common cause of atherosclerosis is smoking.  Second most common, diabetes. I don’t smoke and I’m not diabetic.

Move down one notch on the algorithm.

Next cause: neurogenic.  Degenerative Disc Disease, long-standing.  Yup, got that. Description.  Yup, got that.  What to do about it: um, let’s see.  Whole spine decompression and fixation?  Hmmm, let me think about that for a while.

In the meantime, I have my explanation for the most recent annoying symptom on the list: my right thigh goes into a cramp when driving in traffic, or anytime I can’t use the cruise control.  Claudication!  And it didn’t cost Medicare a thing!

Dammit, is there a doctor in the house?!

Getting back to the shart thing:

Last evening, having completed all of the cardiac testing I intend to have in this life, I collected my ebullient pup from the vet and returned to my tiny-but-it’s-got-a-plugin camping spot.  Had a few larfs with a kindred soul at the far end of the campground, went to bed with high hopes for today. Woke up feeling pretty good, made coffee and a gluten free muffin…whoops, the Crohn’s monster swooped in and snatched another day.  Oh well, let it go, let it go, let it go.  What’s the hurry?  Where’s the fire?

In my guts, is where the fire is.

**Dear R. Crumb, thank you for bringing Cheeses K. Reist into the world.  Cheeziz is his great-grand-nephew, seven times removed.

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?

Snoop Lion Opens Up About His Pimp Past | Rolling Stone

Yesterday I lolled about the lobby of a local medical marijuana dispensary for four or five hours, waiting my turn to see the Marijuana Doctors so I could apply for my card.

There was plenty of time to browse the paraphernalia in the glass cases all around.  I closely inspected everything, since there was nothing else to do.

I couldn’t help but notice the “Snoop Dogg” brand bongs and papers and stuff that I had no idea what it is because I’m, you know, old, and I come from a whole different pot culture.

So I got this really bad feeling when I saw all this S.D. branded stuff, because several years ago, when I was writing under a pseudonym about my years as a street kid, it came to my attention that there was this rapper, famous and rich, who was very out front about his background with the Crips (very violent bad street gang), and fulfilling his life’s dream to be a pimp.

Even if I hadn’t been obliged to use my body as currency for the purpose of having food and shelter, I would still find it nauseating that this “nigga,” as he calls himself, who has made himself a role model for young people of every race and background, actually went and built his little dream fantasy, which you can read all about in the Rolling Stone article in the link.

Have your barf bag ready.

This dude is SUCH BAD NEWS.  In so many ways.  What’s his appeal?  That he shoves everything that’s morally horrible in our faces like bags of shit?

He ought to know a bag of shit when he sees one….every time he looks in the mirror.

http://www.rollingstone.com/music/news/snoop-lion-opens-up-about-his-pimp-past-20130508

Jets Are Circling: War Trauma

Here I sit in my safe little corner of America.

But jets are circling overhead.

Why?

If I were back in Israel it would mean only one thing:  war.

Israel is a very tiny country, surrounded by hostile nations on all sides.

Our greatest love, as the Jewish People, is our Holy City, Jerusalem. 

Three times a day, in our regular prayers, and after eating bread, we pray:

“U’vanay Yerushalayim, ir ha’kodesh, bi’m-hayrah u’vyameynu, ahmein.”

And (please, God,) rebuild Jerusalem (and the Holy Temple that is the definition of Jerusalem,) the Holy City, quickly and in our days, amen.”

In times of threat, the Israel Air Force jets circle Jerusalem endlessly, protecting her from harm.  Jews, Christians, Muslims, all protected by the IAF.

No other air traffic flies over Jerusalem airspace.  If it does, it gets promptly escorted out by IAF jets.  Sometimes it’s an innocent mistake, but even a private plane owner (of whom there are very few) will find himself in big trouble for inadvertently flying over the Holy City.

The jets have left now but I’m still shaking.

I think of those unfortunate people who live in countries where jets overhead mean bombs and death.

During the 2009 war with Gaza, which is such a complicated situation that I can’t begin explaining it here, my windows were in just the right position to hear the mortars and missiles coming out of Gaza, and the bombs dropped on the tunnels and munitions dumps roaring, columns of smoke belching into the air as the cached explosives went up.

And I knew, each time, that innocent lives were being torn apart, killed, burned, limbs lost….And the jets circling, always circling, and the mortars going “whump…whump…”

One day I was sitting learning Torah in my yeshiva (house of Jewish learning, study hall), when the air raid siren went off.  We students did what we were trained to do: head for the nearest miklat, bomb shelter.

But when we got to the door of our yeshiva, we ran into a group of IDF soldiers.

“Where are you going?” They asked us.

“To the miklat!  What are you doing here?”

“We came to sit and learn.  That’s the best bomb shelter!”

So we all sat down to learn together.

But still, when the jets circle over overhead, my heart pounds, my mouth gets dry…

A Coupla Bummers and A Miracle

Well, it was Thanksgiving in America, again.

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

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

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

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

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

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

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

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

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

“Were you able to practice Islam in America?”

“Well, of course!”

“Then why did you move to Saudi Arabia?”

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

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

Oh yes. I was talking about Thanksgiving in America.

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

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

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

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

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

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

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

So that was Thursday.

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

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

“Why do you want to know?”

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

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

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

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

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

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

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

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

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

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

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

Date.

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

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

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

____________________________________________________

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

Now for the Miracle part.

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

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

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

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

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

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

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

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

_____________________________________________________

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

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

 

 

Tales From The Roadtrek #1

My favorite essayist, E.B. White, would often begin a story with a wandering tale about what he was doing at the moment of his writing: lying in bed sick, listening to the pigeons on the ledge of his New York apartment; lying in bed sick–even though he was a very active man when he was well, he was often sick, having a poor constitution–at his home in Maine, listening to the mourning doves in the tree outside his window, and so on.

I am one-and-a-half days into a two-day reservation at Hamlin Beach State Park, which is in New York State due north of Rochester, on Lake Ontario. I arrived near dark last night, having taken a bit of a tour through my old haunts here in this town of bitter sweetness. Here I did my hellish residency in Pediatrics, got divorced, got my first job as Director of a Pediatric Emergency Department on the merit of my performance as a model prisoner of the hospital known as The Gulag, where residents who were out of favor with the Powers that Were and Are Now In Their Graves–which is too bad, because I would like to give each and every one of them a piece of my mind for punishing me for being sick—were sent.

It was meant to be a punishment, and for some it was.

As for me—I was right at home.

The Gulag’s other moniker was the Knife and Gun Club. It sat right in the heart of violent gang land. Crips ‘n’ Bloods. Each with their own highly honed style of maiming and/or killing members of the opposing gang, if they could; and they did.

It felt just like Chicago to me. Many nights in my Upper Clark St. apartment, lovely and cheap, we would have to creep around on the floor lest we meet the fate of those who are struck by stray bullets during yet another gang war taking place in the park across the street.

I had been banished to the Gulag’s Emergency Department for seven months, so I simply moved in when the existing director bailed out. The Gulag was just my kind of place. I stayed and played for another two years.

The campground—we’re back to Hamlin Beach now—is at least a half-mile from the actual beach. That is just fine with me, because several weeks ago I camped at an absolutely dreadful campground on the Jersey Shore (New Jersey, not Jersey in England). The place had all of the unpleasantness of Eastern beaches, except the beach itself—for that, you had to drive twenty miles.

But no need. The campground featured plenty of coarse and painful sand that blew into everything, causing normally decent food to become dangerous to the teeth. Sand fleas, sand flies, fire ants, and, I discovered in a most unpleasant way, a medium-sized member of the spider clan that is perfectly camouflaged to look like the sand it dwells in. Well, not all of them dwell in the sand; some have moved into my camper, and now it is a game of “I squash you if I can catch you before you bite me, you little bastards.” I have no idea how to get rid of them without poisoning all of my tiny premises.

Anyhow. We return to New York State. The Lake Ontario beach is at least a half-mile from the campground, as I have already mentioned. Today I set out on foot, with my big sun hat and heavy multipurpose walking stick (the one my father, of blessed memory, cut from a rhododendron branch that had been climbed by a vine, causing the stick to be shaped in a mesmerizing spiral).

I found some pretty trails winding around toward the beach, only some of which were carpeted with poison ivy. The rest were nice dirt trails covered with pine needles. [After-note: did you know that eucalyptus oil is very effective at quelling the itch from poison ivy?  Good thing I happen to have some.]

After a delightful meander, I found myself on the strand of Lake Ontario. I mused on the fact that even though I left Rochester in 1992, Lake Ontario still lay sloshing in its glacier-carved bowl in the Earth’s crust, same as if I had never left. Fancy.

I watched the early evening swallows swooping and scree-ing together, something I have always loved to see. The gulls stood fat on the water line, gobbling the bounty of lake mussels–a bad creature imported on the hulls of the great ships that make their way from the Atlantic into the Great Lakes by way of the Saint Lawrence Seaway, which have wreaked havoc on the lakes’ ecology by way of competition for nutrients. But the gulls love them. I was struck by how many more of them—mussels, not gulls—there seemed to be, judging from the mess of them on the beach, than there were the last time I was here, so many years ago.

My eyes kept straying to the water, and every time they did, I felt the familiar nothingness come over me.   Actually I didn’t feel anything. Only in retrospect do I realize what must have happened.

The breeze picked up as the shadows lengthened, and as the chill ran down my spine I turned to walk back to the campground.

I walked and I walked and I walked, and at some point realized that I had become disoriented in the process of trail-meandering, and had wandered too far to either the East or the West, I wasn’t sure. So I kept on walking straight, figuring that since I was on the road that bisected the park, I was sure to come upon a sign eventually.

Only problem was, my legs were tuckering out. Nowadays when I walk too far my legs start feeling stiff and weird, and they hurt. Well, they were hurting, all right, and I really did not want to keep on, and was thinking of sitting down in the grass on the side of the road; but since it kept on getting dark, that did not seem like such a good idea. It is better to be lost in the daytime than at night, don’t you think?

Not one single vehicle came down that road the whole time I was dragging myself along, grateful for my walking stick, which was by now doing yeoman’s duty by way of holding me up. I prayed and prayed for a park ranger, but unlike taxis in Jerusalem, which arrive if one prays sincerely, no park ranger responded to The Call.

At last the answer to my real-time prayers came along in the form of a Border Patrol Officer in a Jeep. I flagged him down and told him that I was looking for the campground. He grinned and pointed–the entrance, which was only a quarter mile away, in the very direction in which I was hobbling, appeared out of nowhere. Perhaps he was a wizard or a saint, and he either conjured it or performed a miracle.

Or, perhaps, had I simply kept on, I would have arrived at it in a few more minutes of agony and confusion, but Heaven sent this uniformed angel to relieve my mind.

(Still, I would have taken that Jerusalem taxi. At least I wouldn’t have had to walk any more.)

I still had a mile or so to negotiate until I arrived at my campsite, so I continued to put one foot in front of the other, trying to ignore the mounting pain and stiffness, until I finally reached my little motorhome and collapsed on the bed. My legs felt as wooden as my walking stick, although not nearly as useful.

Even now, hours later, if I try to move around much my feet go into painful scrunched-up spasms. One of these days I will get around to going to some doctor about this, if I can find one who is not a dimwit. if you are a fellow doctor who is not a dimwit, then a) this does not apply to you and b) please be in touch immediately.

Two Days Later

I think I must have had a bit of a hypomanic episode the morning I left Lake Ontario and headed straight south on Rt. 15 to pick up I-86 West. At 4:30 am my eyes popped open. I wasn’t sleepy.   Odd, even though I had passed out at 8:30 the previous night after the unplanned hike. My biological clock usually has me waking up between 8 and 9.

I have managed to wean myself off the dreaded Zolpidem (Ambien), and now instead of being forced to sleep for 12 hours at a stretch, my body seems to be tentatively investigating what her normal sleep pattern actually is. It’s delightful, really, to lie in bed with the lights off, listening to whatever is around me, whether it be tree frogs and whippoorwills, or semi trailer trucks roaring in and out of the truck stops I like to lay over in, like this one, two-thirds of the way toward the Western boarder of Indiana; and drift gently off to sleep, rather than literally passing out from drugs. Takes some getting used to, though.

Day before yesterday, I drove 400 miles, and enjoyed every bit of it. Blue skies, gorgeous mountains, farmland, Amish settlements, elaborate barns, simple houses.

Bivouacked at a truck stop, and was dismayed to find that unlike most of its kind, this Flying J did not have a special overnight parking section for RVs. Even the trucks were stacked up two to a space.

There were a few “regular car” spots over in a corner by the entrance of the truck lot. One space open there, better grab it. I pulled as far in as I possibly could, because my position was just beside one of the fuel lanes.

Yeah, OK, it sucked, but I was so tired from my hike and my long drive, I was grateful for the privilege of parking overnight without the dreaded 3 am knock on the door, lights flashing in the windows–fairly predictable if you park overnight just anywhere…so I’ll put up with a noisy, stinky truck stop where my sleep is unlikely to be rudely interrupted.

All evening I drifted in and out of sleep, frequently jarred awake by the ka-BAM, ka-BAM of the trucks running over a piece of broken pavement 5 feet from my van. I had to do some emergency self-NLP in order to abort the full-fledged panic attack I felt coming on.

Fortunately, the noise settled down and finally stopped at about 11. I learned something new about trucking: there are two kinds of drivers, the day ones and the night ones, and they change shifts at about 11 pm.

I marveled at the connection.

Before I had diagnoses and meds and sleep, I used to like to do my long distance driving at night, especially if the trip involved crossing deserts or long stretches of the Mysterious Midwest flatlands. One cornfield looks about the same as another to me, friends.

At night, the highways belong to the trucks. So many trucks come out at night: in places they’re bumper to bumper at 85 mph.

In a regular car that’s terrifying. It feels as if they don’t even see you–that they will just run right over you.

When I got my big Dodge truck and 33 foot horse trailer (with full living quarters) I got started with CB radio. Suddenly the highway exploded into a whole new dimension.

“Hey J.B. (J.B. Hunt is a trucking company), keep an eye on that four-wheeler (regular car) on your left lane. Looks like he wants to pass you.”

“Thanks, good buddy. You got anything good to listen to?”

“Wellll, just a couple o’ them Jeff Foxworthy tapes. He cracks me up!”

“Yeah buddy, he do! Hey, if I see you at the Flyin’ J you want to look through my tapes and see if you wanna trade for somethin’?”

“Sure thing, good buddy. Ten-four.”

“Ten-four.”

It never crossed my mind that there might be an entire subculture hidden from those of us who drive around oblivious in our four-wheelers. And then there is the overlay of a subculture of land-bound humans who sit up all night with their CB radios talking to the truckers. They have colorful “handles,” or nicknames, and each of them has a persona—and an agenda. Luckily, CB radios have lots of frequencies, some public and some that can be rendezvou’d upon by mutual agreement. Dialing my way up the channels in order to chat privately with a friend, I’ve also come across some highly illegal activities right there in traffic.

I did merit some special treatment from the truckers when I was pulling my horse-hauler. Since I always made sure to politely introduce myself, I was graciously received by the pack of whining 18 wheelers hurtling along around me.

“Hey, good buddy, OK if I slide in in front of you? I got to get off at this exit.”

“Ten-four, little lady, you go right on ahead.”

He flashes his lights when I’m far enough ahead to safely change lanes. I flash mine twice: Thank You.

I haven’t got a CB in this little rig yet. I feel kind of funny about it, being only 22 feet long, as opposed to the 120 foot length of your average tractor-trailer combo. I’m going to have to swallow my pride, though, especially if I keep on getting up while it’s still dark.

Today I felt like crap all day long. Maybe that’s because it rained so fucking hard yesterday that I had to bail out at the first truck stop I came to in Fort Wayne, Indiana. I had wanted to travel another couple hundred miles to an actual campground, get a really good shower—my rig has a tiny shower in it, but there’s nothing like standing under a stream of hot running water for as long as you want.

I saw a couple of little baby tornadoes forming in the clouds, and the barometric pressure was bouncing all over the place. What else could make one’s ears pop on solid flat land?  But I had the SiriusXM Radio pegged on Classic Vinyl, and if The Big One had dropped down out of the sky and swooped me up–well, I guess that would have changed my channel, all right.  But it didn’t, and here I am, still.

The only place I could find to park turned out to be right over a sewer drain, which was flooding a bit because of the rain, so I spent the night inhaling noxious fumes.

Maybe that’s why I feel like crap today.

Didn’t even make 200 miles. Didn’t even get out of fucking Indiana.

I’m on U.S. Highway 24, Westbound.  Flying J again.

Oh well. Isn’t that what this journey is all about?

Roll with the punches.

Enjoy Paradise.