Paging Dr. Van Winkle

When was the last time you woke up and realized you’d been a drugged zombie for 17 years?

That happened to me.  This month: May, 2017, I went through what is, I hope, my last withdrawal from psychiatric drugs.  (I remain on lithium, which is killing my kidneys slowly, but I need it, at least for now.)

And now I’m me again.  But who the hell is “me,” and what am I supposed to do?  Having been disabled by my various chronic conditions, multiplied by the even more profound disability of the drugs that were supposed to help me function, yet enveloped me in such a cloud of grey fuzz that I was insulated from both my environment and myself, I awake to find a gulf spread out between myself now and myself in the past, with no way to possibly bridge it.  17 years.

If it had not been for the drugs themselves doing what drugs do (side effects and adverse reactions), I’d still be moving about in a sea of brain fuzz.  I had no notion of stopping them on my own.  The opposite!  I was convinced that it was only those drugs that prevented me from the inevitability of suicide.  But even before I began getting serious side effects that contraindicated the antipsychotics and antiepileptics, I had started to sow the seeds for what would serendipitously become the replacement for not just one, but seven, psychoactive drugs, plus a prescription antiinflammatory.

I started taking cannabinoids as pain medicine.  Following a protocol hybridized from several in use, I began a scheduled dosage of cannabidiol (CBD), along with microdoses of THC.   I started this in the fall of 2016, and the pain relief has been superior to anything else, with minimal negative side effects and a whole load of positive ones.

When my antipsychotics began to cause extreme muscle twitching and movement disorder, I thought for sure I was doomed, because I really had benefited from their help.   The combination of brain without quetiapine and brain in withdrawal from same really did haul me to the brink.  And that was before I ever thought of cannabis.

Fortunately I had plenty of benzos to blunt the crash, but I’ve always been very careful not to get hooked on the benzos….and actually didn’t, despite being on them nightly since 1989.  More about benzos shortly.

The next to go was my darling lamotrigine.  Now, modern neuroscience tells us that bipolar disorder shares features with seizure disorders: there is a type of “kindling” that begins as a misfiring somewhere in the brain, which can then spread to other parts and finally, if that process is not interrupted somehow, involves the entire brain, causing an acute episode.  Medication and other treatments can stop this from happening, or at least blunt the reaction (note: CBD is shaping up to be a very effective antiseizure medicine, as proven in study after study).  Since antiepileptics help in bipolar disorder, that adds weight to the hypothesis that bipolar shares features with epilepsy.  Clearly, I did not want to stop my lamotrigine; but I developed the most feared side effect: toxic epidermal necrolysis.  This causes the layers of one’s skin and mucous membranes to separate and slough off, like a second degree burn.  It is incredibly painful and can be life threatening.  Fortunately mine didn’t get that far, but it was terrifying.  Bye-bye, lamotrigine!

I waited for the backlash after quitting lamotrigine, but none came.  By that time I was slamming the CBD every four hours, for a nasty episode of spine arthritis pain.  Either I had suddenly stopped needing antiseizure meds, or…wait….I was taking them–just a different one, for which my body has actual receptors: CBD, which activates CB1 receptors in the brain.

The winter wore on, and I found it necessary to have my injured left wrist operated on for the 4th time.  Even though that’s not a huge surgery, there would be pain afterwards, and if I hoped to receive any opioid pain medication, the benzos might have to go.  I decided to taper over six weeks, which is very rapid for benzodiazepines.  These drugs, which have helped me and many others immensely, are very hard to get off of.  Our bodies love what they do.

I was also taking Zolpidem, a sleeping pill that works on similar receptors to benzos.  In effect, I was taking two different benzos!  That had to stop.  And if that weren’t enough, I had a third benzo that I took when my PTSD broke through: clonazepam.  Three different types of benzodiazepines.

It wasn’t as hard as I expected.  The CBD stepped right in behind the benzos, and now that’s what I use.  The benzos didn’t make me stop having PTSD.  They helped me sleep and function a bit better in everyday life.  CBD does that too, and I feel like I’ve walked out of a wall of fog.

Along the way I got rid of the gabapentin (prescribed for neuropathic pain: THC works much better), and the celecoxib, which is supposed to be for pain/inflammation, but CBD/THC combinations work worlds better and cost much less.

Yes, medical marijuana is costing me much less than the copays for my prescription drugs, which at one point were close to $500 a month– with Medicare!  My oils, tinctures, and herbs are now costing me less than $200/mo.  Soon I hope to grow my own, which will cost even less and I’ll be able to grow organically.  I’ve substituted one botanical for eight pharmaceuticals.  Hmm, no wonder Big Pharma is all about patenting those cannabinoid analog drugs and suppressing the medical marijuana movement!

I feel like someone who has been sucked up by a vacuum and plopped down somewhere entirely different.  I can see where I was at the beginning, and I see where I am now; but the ground I have traveled is invisible.  It is a chasm.  I am no longer who I was then, and no longer who I was along the journey.

Fine, you say.  Congratulations!  But it’s not so simple.

You see, I became disabled from working at any job whatsoever on 4/4/2000.  Since that day I have maintained my medical license and all its requirements.  I tried to go back to work a couple of years after my breakdown, only to find that the system has quirks in it that do not include doctors with bipolar disorder.  I was trapped being sick.

I did do a few miscellaneous things with my time, but between my physical illness and my brain and its special disabling brain-drugs, I was trapped into being a sick person.

I have always felt that the brain part was the limiting part, since people manage to continue to work with all manner of disabilities, up to the point where the body simply puts on the brakes– like, for instance, the years I have spent on the toilet.  Or the years without use of my hands, due to joints falling apart and needing surgery.  Or the vexing problem of not being able to look up, down, left, or right, due to neck arthritis.

With my head out of the fog, I’m looking into the future.  It looks awfully scary.  I used to not care about the future, because I was certain of dying from one thing or another before I got there.  Now I’m not so sure, given the salutary response to cannabinoid therapy, that I won’t have a shot at another decade or so.

Problem is, I won’t be able to afford to live.  I have private disability insurance that will (if they don’t find a way to screw me out of it) continue till age 65, which is another year and a half.  After that, it’s Social Security, if there still is such a thing by then.  And although I’ve saved aggressively, I don’t have enough to even remotely get by.  And, lamentably, I don’t think I will be magically all better by then.  My skeleton will still be a wreck, and my guts will likely still be a-bleedin’.  I won’t be able to work at Wal-Mart, unless they have a back office with a bathroom.  

It’s a great grief to look back over that 17 year chasm, back to myself doing my doctor thing, the life I loved.  Now I’m just an aging sick person, soon to be an aged sick person living in poverty.  This was not what I requisitioned.  I did not work three jobs to put myself through The University of Chicago, to end up as one of the underhoused/homeless seniors I meet on the road.  I did not work my way through medical school and graduate school so that I could live the rest of my life disabled.  I did not work 120+ hours/week for three years of residency, only to become a patient myself, with nothing to show for my passion.

It’s tempting to throw in the towel, seeing what a colossal waste my life has turned out to be.  But not yet: I have time.  There’s always death waiting.  I want to see what’s out there, at least until my next surgery.  A joint replacement, and I don’t mean that kind of joint!

At least maybe then I’ll be able to play my banjo.  That really was the last straw with the “god” thing: taking away my hands.  If that very god looked upon me as I played, clinging to that banjo for very life during the hard times–since the moment I first picked up a banjo at age 19, it has been my comfort, my solace, and my joy where there was none before.  And my prayer, my meditation, my chant.  So if then there was some god watching as I played, and it decided to afflict my hands and take my one direct line to joy away, then I say….shame!  For tormenting the tormented.  

At least if I get a new wrist and can make it work, then I can sit and play and people will throw money.  I’ll be grateful.

Feets of Dexterity

As I watch this astonishing circus act–one woman’s virtuosic dance with one fabulously flexible body, four limbs, twenty digits, and five juggling balls–several feelings cycle through me.

The first, of course, is wonderment and admiration.  What pure joyful dedication!  You have to see this.

The second is sadness, for myself and everyone else who once knew the joy of a body that did pretty much whatever we needed or wanted it to do for us, but are now struggling to come to terms with some kind of wreck.

The third is fear.  I fear for this circus performer.  Ten, twenty, thirty years from now, what will her life be like?  Will her joints and muscles and nerves continue to serve her faithfully?  Or will she, too, face the late consequences of connective tissue that behaves like a new rubber band in youth….and an old worn-out rubber band in middle age and beyond?

Will she sail into her old age like Martha Graham, the dancer and choreographer who performed her final ballet at age 75?  I hope so, for that is the dream of every dancer, every artist whose body is the medium for not only the expression of life, but the medium for experiencing life itself.

Martha Graham wrote about what happened when she retired from the stage in her memoir, Blood Memory:

It wasn’t until years after I had relinquished a ballet that I could bear to watch someone else dance it. I believe in never looking back, never indulging in nostalgia, or reminiscing. Yet how can you avoid it when you look on stage and see a dancer made up to look as you did thirty years ago, dancing a ballet you created with someone you were then deeply in love with, your husband? I think that is a circle of hell Dante omitted.

[When I stopped dancing] I had lost my will to live. I stayed home alone, ate very little, and drank too much and brooded. My face was ruined, and people say I looked odd, which I agreed with. Finally my system just gave in. I was in the hospital for a long time, much of it in a coma.

Peace Be With You

image

A Warrior Woman has left this world.

She slew her Dragon.

Let us celebrate her life.
Let us celebrate her release from its tortures.
Let us celebrate her beauty.
Let us celebrate her release from prison.

“I hope my death is peaceful,
And I hope never to return.”
–Frida Kalho

Ogallala Afternoon

You might be wondering where, or what, Ogallala is. 

Ogallala is a smallish city in Nebraska, USA.  It’s named for the Ogallala band of Lakota (Sioux) Indians, who once roamed freely in the Plains, but like all Native Americans were rounded up and planted on reservations during the Westward expansion of white Americans.  Ogallala, Nebraska, is now a corn town.

I’ve been on the road or off the grid now for weeks.  Lots of thoughts, some jotted down, some evaporated, and some that maddeningly recirculate, playing themselves over and over until they are drowned out by the urge to drag my malfunctioning brain out of its bone box and fry it on the sizzling pavement of I-80.

In particular: the thoughts that forced me to bivouac early in bucolic Ogallala, as I was pelting down the blazing Interstate, trying to get to Michigan to meet a deadline.

I am haunted by the spectre of losing my son.  I believe I have lost him.  I believe I never had him.

This adult child of mine has never been happy with much, for long, particularly if it had anything to do with me.

He was miserable as a baby, except when eating or preparing food.  He learned to cook by watching over my shoulder from his vantage point in the backpack.  Since he screamed for whatever chunk of time he was put down, hours at a time, and I mean hours and hours, of necessity for my health and his life, I put him in the backpack and wore him.  If he screamed in the backpack, I put him to bed (clean, dry, and fed, of course) and turned on the vacuum cleaner and put in ear plugs and turned up the stereo and went outside and walked around in the yard and wished I still smoked, until his father came home. 

“Clap hands, clap hands
Till Daddy comes home
Daddy has money and Mommy has none…”

But his father objected to being handed a screaming baby even before he was properly through the door.  In retrospect I don’t blame him. 

As a pediatrician, having a “difficult child” proved helpful.  It increased my Compassion Quotient.

I’m sure you’ve heard of awful cases where someone shook the baby, or threw it, or did some other act of violence because the baby wouldn’t stop crying.  Most of us recoil in horror from these news items, and frequently judge the mother harshly.  How could she?  How could she?

Thankfully, I never did violence to my perpetually screaming baby.  I took him to the doctor every week, sometimes more.  My pediatrician patiently explained that he had “colic” (rubbish! colic is what they say when they don’t know why the baby cries) and that it would go away when he grew up (it hasn’t).

I remember even at the time, walking around the back yard in the middle of the night, thinking how grateful I was that I had the emotional resources not to simply throw him into somebody else’s trash bin.  Later on, when I turned into the Director of several Pediatric Emergency Departments, I would draw upon that experience when the babies of other, less resourceful parents came in with grievous injuries or worse.  As much as I hurt for those babies, I hurt for the parent who loved their child, yet in an instant of just-too-much-over-the-top screaming, snapped, and hurt their own flesh and blood.

Apart from myself, I think no one pities a parent who has hurt, or even killed, their child, in a moment of unpremeditated rage.  In fact, I don’t even think it’s rage.  I think it’s more simply end of the rope, no more self control, just shut up!  Type of thing.

Maybe they didn’t have a back yard, vacuum cleaner, stereo, teeth to grind, nerves of steel.  Maybe they didn’t have those resources.

I was grateful for mine.

Looking back, I’m also grateful that it wasn’t just me.  Who couldn’t pacify this child, I mean.  I feel vindicated.

When I went back to work and school after five months at home, I left the backpack with the babysitter, who muttered something about knowing how to take care of spoiled babies.

When I picked him up at the end of the day, she had that backpack on!  She muttered something about weaning him off it by the end of the week.

She wore it, and him, for about two more years.  Then we moved.

As far as I can tell, that’s when our troubles first began.

This person to whom I gave birth and did not kill, resents me with a passion.  I resent my own mother, for far different reasons, yet I have compassion for her because I am a hated mother.  I will not tell her I love her, because I don’t.  I don’t confide in her, because whatever I say can and will be used against me.

I have tried to be a good listener to my son.  I know I have been, because he has always come to me with his troubles, and I have felt a bit of guilty pleasure in listening: guilty for being pleased that he came to me in his time of trouble, wishing he didn’t have the troubles that brought him to me, yet pleased that he felt comfortable in coming to me for help.

I did my best to help him to become self-sufficient, since that, in my experience, is the best gift one can give a child, second only to unconditional love.

When he got into trouble, I let him flounder a good long while before I bailed him out.  And I didn’t just let him off the hook.  I got him out of mortal danger, and after that, he had a lot of meaningful work to do. 

I feel now as though I’m explaining, justifying, trying to talk myself into believing that I wasn’t a horrible harpy mother like mine was.  I’m picking through my brain, finding reasons to believe I did OK.

But more often, I’m picking through my brain, finding every little particle of doubt, possibility of abusive behavior, coldness, emotional distance, unavailability, what?

What happened?  Or, more probably, what didn’t happen?

Through the decade of his twenties, it seemed we got along fine.  Then came last Thanksgiving.  I got gobsmacked, blindsided. 

He invited me for dinner.  No one else, just me.  I thought that was strange, suggested we invite somebody else, or go to someone else’s dinner.  No, he didn’t want to.

And he didn’t want help cooking, because he gets impatient with someone else in the kitchen.  So I sat on the couch and smoked his weed. 

He presented the meal.  It looked lovely.  He asked me to take a picture of him with his beautiful dishes all arranged on the table.  I did.

After dinner I went out and slept in my camper in his parking lot.  The next morning I came in and showered while he went to work for a while.  When he returned, he made it clear he expected me to leave: immediately.

There was the old threatening feeling I knew so well, the feeling of dark clouds, anger, intimidation, that he had used to get his way as a young adolescent.  I hadn’t seen that in twenty years. 

I didn’t want to leave just then.  I was nursing a migraine, was exhausted from the many hour drive to his place, and I didn’t want to be bullied.  I wanted to curl up on the couch and drink coffee and smoke weed and watch cartoons in my pajamas.  But it was, after all, his place.  Not mine.

He showed me the door. 

“I really need my space back, Mom,” was how he put it, and opened the door for me, so I could go through it.

We’ve spoken four times since then.  They haven’t been pleasant times.  When I ask what happened, what changed, I get a tirade about how I dragged him around when he was a kid, how I wasn’t available emotionally or physically, and I apologize.  And he is angry, and doesn’t want to hear how I feel. 

And I get all confused.  Here is my son, angry at me.  I didn’t kill him when he was an angry, inconsolable baby.  Why isn’t he grateful?  Isn’t he happy that he’s now a successful adult, with a promising career, lots of nice friends, no lack of women friends, enough money for his needs?

My own mother used to tell me I was “shit,” burn me with match heads, just to see me cry.  Then she’d laugh and tell me I should grow a thicker skin.  And she wonders why I avoid her.

I tried my best to be another kind of mother, the mother I would have chosen if I could have had my choice.

I guess it doesn’t work that way.

Shifting Sands

There are many definitions to “function.”

Most days I find myself checking inside, feeling how I feel right now, and reminding myself that this is how I do “function,” at this moment in time.

Maybe in five minutes I’ll function some other way, but that is something I can neither predict nor control.

My goals are slimmer, tighter. I will take a walk. I will play with my dog. I will give a go at reading this book, and if it won’t read, I’ll put it down and try another time, or not. I will be happy if I remember to give both my dog and I our pills. I will consider it a triumph if I don’t get angry. These are things I now call “functioning.”

I used to go to work every night and save lives.

“Bye folks, I’m off to save lives,” I would say to my family. And I did. Save lives. Just not theirs. And not mine.

After the crash, it has been as much as I can manage to live from day to day. I don’t know why I do it, since there’s not much I can contribute any more.

Maybe I’m finished with the “contributing” part. Who knows.

At this point I just have to be sure I stay far away from the tongue cluckers. I’m too fucking old and busted up to let myself feel bad just because I did the best I could, continue to do the best I can, but now the definitions have all changed.

It’s taken me a long time to get this, to see it clearly. There’s a grieving process, mourning who you were and what you loved doing and how it defined you, both in your eyes and in the eyes of those who knew you then. It’s like giving birth to a stranger. Who the hell is this person in the mirror?

I guess that’s our job now…getting used to who we are, the shifting sands.

The broken shards.

I give the filthy homeless people money.

Critics disdain: why do you give those filthy people money? They’re just going to go buy booze with it.

That’s not my business, what they do with it. If booze is what they need to get from one day to the next, am I God to say that I know better than they do?

Tomorrow, that may be me standing there with a sign out. Or you.

Who knows, that filthy smelly person might be Elijah the Prophet. He’s said to take the form of a down-and-out person, the kind you wouldn’t let in if he came to your door begging.

How do you know this person’s personal tragedy?.

There but for the grace of God go I.
Truthfully.

The longer I live in this tiny camper, the closer I get to myself. It’s not comfortable. Not the camper, and not myself. I can’t avoid the truth: in many people’s eyes I am a failure. They can’t boast about their “daughter/mother/cousin/niece the doctor.”

No, don’t. Don’t say I’m still a doctor, because I’m not.

I’m just me.

That’s all.

Just me, and if that ain’t good enough for ’em, fuck ’em.

The Carrot and the Stick

My life hangs by a frayed thread.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Disaster.  Thrown away, street life, homeless shelter.

Mother now disabled by mental illness, bankrupt.

Son needs help, NOW!

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

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

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

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

But.

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

This year, something different.

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

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

No, he said.  Everyone already has a place.

I wondered.

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

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

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

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

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

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

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

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

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

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

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

I guess I’d better go now.

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

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

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

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

Oh, OK, I understand.

Beggar at the door, no place for you here.

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

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

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

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

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

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

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

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

Love you, honey….

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

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

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

There goes my carrot.

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

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

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

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

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

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

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

When she goes, I go too.

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

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

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

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

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

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

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

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

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

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

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

 

 

Happy Birthday, Dad

You would have been 91 years old today.

As it turned out, you left last year, three weeks short of your ninetieth birthday.  You couldn’t hang around for the chocolate cake; you had places to go.  You stuck it out as long as you could.  But anyone with a brain in their head could see that you were finished.

You were my hero.  I adored you, and I still adore you, and I always will adore you.  My tiny house on wheels is adorned with photos of you and your art.  It’s a rolling monument; you have no other, since you chose to be incinerated rather than buried…I always thought you’d make an ash of yourself….

I chuckle when I think of the horrible puns you managed to dig up on every possible occasion.  You and I would roar with laughter while Mom twisted up her face in disgust.  I wanted to punch her, but you either ignored her or said, “Aw, come on, don’t be such a fuddy-duddy.”

The week before you died, you complained of boredom, so I brought a book of short stories that I had given you many years ago.  I began to read my favorite, then realized with horror that it was a very black story about death!

I said, “Uh, Dad, do you mind some black humor?”

Through blue lips you croaked, “The blacker the better!”  And we had our last good chuckle.

You never laid a hand on me in anger, except for the one time you gave me a real over-the-knee spanking, at my mother’s insistence, for the crime of running away from her (again).  But your anger was not at me, but at her, and after the deed was done, you left me crying on my bed and closed the door.  I heard you tell her to do her own dirty-work.  Then my door opened and you came in to make sure I was all right.  You never touched me again, except for your bear-hugs and rides on your shoulders.  I loved it when we came to a doorway and you would shout “Low bridge!” so that I would know to fold myself around your bald head, and you would crouch down so I wouldn’t get bashed.

Your body betrayed you, but you squeezed the last drop of your strength to make your beautiful art.  It was only when your mind finally failed that you made your last body of beautiful work, walked out your studio door, and never returned.

You mourned your work, as I mourn mine.  Our conversations about that laid to rest your bitterness about my leaving practice, and my bitterness that you thought it was out of laziness rather than disability.  Once you had tasted the bile of being unable to do the work you loved, you apologized to me, and the sweetness of that apology erased my pain, although I grieved the fact that you had to live my experience in order to learn it.

After I left home, and my mother disowned me, you would sneak and visit me, wherever I happened to be, on pretense of work.  We reveled in our stolen fruit. 

Once when you came to dinner, I slipped on the kitchen floor and spilled the whole pot of home-made spaghetti sauce, full of sausages and mushrooms and wine, which you must have known had cost me a month’s worth of wages to buy.  You made your “tsk” sound and grabbed pot and spoon, and scraped that sauce right off my kitchen floor.

“You mean we’re going to eat that?”

“Damn right,” you grinned.  And we sure did, and chalked up another of our secret treasures.

And that time in Chicago, when you had dropped a machine on your hand and crushed it, and had it in a cast; and I had had a soccer injury, and was on crutches; and Chicago had had one of her epic snowstorms–we tottered around town, holding each other up, a couple of cripples, hilarious at every near-miss slip.

Oh, you taught me how to scare minnows from under their rocks and catch them in my hands, how to tuck a frying pan and some bacon and cornmeal in my creel in case one of us actually hooked a fish, and how to make a smokeless fire on which to cook it, if it came to that.

You taught me to chew tobacco (yuck), how to smoke a pipe of tobacco (blech), and how to get roaring drunk and laugh and talk philosophy till the wee hours (yum).

I could go on and on writing about the gifts you gave me, and someday I just might.  However, since I know you want me to save some for later, I’ll just sneak these in:

Honesty, integrity, genuineness, ingenuity, and never, ever to do anything just to “go with the crowd.”

And to live and love fiercely.

Your loving daughter,

Laura

PS I miss you

I’d Do Anything If Only

Atina!  Stop shredding your bed!  Atina!  You can’t have chocolate!  You’re a dog!  Chocolate is NOT good for doggies!  Atina!  Get that goddam wet ball out of my face!  Atina!  SHUT THE FUCK UP!!!

Sigh.

Last night was a total wreck.  For some reason Atina spent her night growling, woofing, and outright barking, at something that I could not see. 

We are in a well-lit campground, so if there was, like, a bear strolling around, or a bull moose, or a hedgehog, I’m certain I would see it. 

Maybe it was some perv hiding behind a tree, whacking off.  All night.  Sheesh.

On this premise, I chalked Half #1 of the night up to Virtuous Vigilance on the part of the Pup.  But when Night Half #2 rolled wearily around, I got cranky.  I shushed.  I gave orders.  I YELLED.  I cursed. 

As grey dawn faded into a grey rainy morning, I felt worse and worse.  If there’s one thing that kicks me right out of orbit, mentally and physically, it’s sleep deprivation.

And of course my baby still needed her walkies, and breakfast, and more walkies, and playtime…And I needed large quantities of thick coffee, and something to force into my queasy stomach so I could take my pills, and I needed to use the bathroom, and brush my teeth, and put on clothes…And Atina, none the worse for her own sleepless night (who knows, maybe 🐶 s only take 😸 naps anyway…), was red hot and rarin’ to go, while I was dragging serious ass.

I got to feeling cross and cheated and just plain ill-tempered, and then I thought about something that happened, and my mind changed.

Here is what happened.

1989. I was pulling a two-week stint in the Pediatric Intensive Care Unit–the PICU. 

My residency program was working us like slaves because we were down four warm bodies.  One, my sweet ward partner, died in a car crash.  One got meningitis from a kid she was treating.  One got hepatitis from her dear boyfriend when he got back from India.  And one was on a sort of permanent leave, because he had miscalculated a chemotherapy dose and the child died.

So the house staff were stretched much thinner than usual.  Instead of every third or fourth night call, we were on every-other or every-every night.

In the PICU we usually did every-other-night, actually 24 hours on, 24 off.  But since we were so badly strapped for staff, the PICU director came up with a brilliant plan:  he would live in the PICU for two weeks, and I would live in the PICU for the next two weeks, and then we’d switch off again for another month.  That way we’d both get to see our families, for the two weeks we’d be off.  And of course if things were slow, our families could come and visit us in the call room, which was an 8 x10 ft luxurious affair made of beige-painted cinderblock, with a tiny bedside table to hold up the phone, and a worn metal chair.  

When you switched off the overhead fluorescent lights, you were instantly plunged into darkness.  Fortunately, every doctor carries a penlight, so at least you could find the bed, if you ever got a chance to actually lie down.

Hypervigilance is a common symptom of PTSD.  Therefore, since half of my consciousness was always scanning the PICU for problems, I never really got to sleep. 

One night when we had a truly puzzling and terribly critical case on the unit, I lay staring into the velvety black of the call room.  Everything had been taken care of, rounds, orders, and the nurses were wonderful and right on top of things; so there was no reason not to catch a few winks.

But I was in the grip of free-floating anxiety, so I felt my way along the wall until I found the light switch, and lacing up my Rockports, I sidled out into the unit.

We’d received a case that day that came in via the ER.  It was a little three year old boy, who presented with a high fever and blueberry muffin looking rash.  I mean really, he looked like a blueberry muffin.  But unlike muffins, which are good, he was not good.  He was in very bad shape.  Septic shock of some kind.  Our usual tests could not detect the pathogen, or anything that could have caused his condition.  This was 1989, remember.  We’ve learned a lot since then.

We ran through every possible infectious disease that we knew about, and every form of toxic ingestion or exposure, and every possible cause of bleeding and organ failure, but nothing came out positive.

So we did the only thing we could do: we put the little guy on life support, gave him fluids and antibiotics and steroids, and prayed that with supportive care, his body would come through whatever it was, and heal itself.

This was not to be.

Even with maximal supportive care, his body deteriorated.  He had been unconscious when he came in, and never opened his eyes or gave any indication of awareness.  His kidneys stopped working, and fluid was backing up into his organs and tissues.  We tried our hardest to keep up with that too, but soon it was clear that this little boy was not going to make it.

I can’t remember who we were waiting for.  His mother had died, I remember that.  It was just his father alone who took care of him.  We must have been waiting for someone else…to be there…when we took him off the vent.

As I turned the corner from my call room to the unit, I saw the boy’s father sitting on a hard chair, his knees up against the bed, stroking his little boy’s swollen hand and weeping, his shoulders heaving.

I laid my hand gently on his shoulder and said nothing, waiting.

“Yesterday,” the father sobbed, “He was running around making so much noise, I told him to shut up…Oh, if he would only make that much noise again!”

Back From The Dead, For Now Anyway

Atina lay on her bed painfully struggling to breathe for hours that felt like years.  I wrote the previous post during one of those years, and I thank every one of you who have sent me such sweet heartfelt thoughts.

Later in the afternoon she dragged herself up–still couldn’t get her hind end to cooperate–and between the two of us, we dragged her into my bed, and snuggled together.  Every once in a while she’d stretch her long neck around so she could clean up my face, and finally when she got some energy worked up, she tried to hold me down to wash me, as if I were her own puppy sniffling and snotting in the bed.

A couple more hours and she wanted to go out and pee, so we went out.  A naughty squirrel decided to tease her by getting way out on a tiny branch, and fell THUMP into the road!  It made such a cannon shot hitting the ground, I thought it must surely have killed itself, but it jumped right up and scampered up the next tree over.

I think this must be how you check for life signs in a Malinois.

image

“C’mon, Mom, just let me climb that tree, O.K.?  Just this once, huh?”

image

A Malinois isn’t dead until you can heave a squirrel at her and she doesn’t move.

But now she’s all worn out from her squirrel hunt, back in bed exhausted. 

If she’s still alive in the morning (no, I’m not joking here), I’ve decided to go ahead with the surgery.  The biopsy will give us the information we need to first of all know for sure what the problem is, and whether treatment can give her more quality of life (to spend cuddling with me, catching frisbees, and chasing naughty squirrels).

There’s a fair chance she won’t survive the surgery.  But her rapid decline over the last few weeks tells me that her quality of life is getting worse.  I love to snuggle with her, but she should be running me into the ground throwing frisbee, not the other way around. 

Wish us luck.

Losing My Buddy

Atina lies dying.  This morning she had a blast chasing her Kong.  Then she collapsed, exhausted from the effort of what was likely her last play session.

She spent the rest of the morning alternating between frenetic activity and exhausted collapse, with her head in my lap as I stroked her cool ears and told her it’s O.K., it’s O.K. to go.

Now she’s motionless on her bed.  Her breathing is irregular.  If she makes it till tomorrow I will be surprised.

Last night she got into bed with me–an unusual phenomenon–and we kissed and cuddled for hours, until I was exhausted and sent her to her own bed.  I woke at five.  She was sleeping in the driver’s seat of the van, same as always, same as Aress did when he was alive.

She jumped up when she saw that I was awake, same as always, and got in my way as I was trying to dress, just like she does every morning.  This morning I did not scold her, but snuggled her black head into my half-off pajamas.  I have known for a few days that it wouldn’t be long.

Yesterday I couldn’t believe, watching her fly after her frisbee, that her lab tests could possibly measure her life in days, maybe weeks, by miracles months.  Yes, her sides were heaving after just a few catches, but hey, she still had the want-to.

Today she’s been shitting her innards out.  The van smells vile.  I gave her a dose of Imodium, which has slowed things down enough so she can rest.  I’m cooking the rice with chicken broth, hopeful that she’ll rally; but to tell you the truth, I want her to die at home, not on the operating table surrounded by strangers.

Her surgery is scheduled for tomorrow.  If she’s still alive in the morning, I’ll cancel it.  They can look at her kidneys just as well at autopsy.

Yes, we will proceed with the autopsy.  I must stop the carnage in the place where I bought her.  I must save other dogs from being used as currency.  In that way, my beautiful girl will not have died in vain.