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.

Depression Is A Drag

I don’t know if anyone else has noticed, but I haven’t been posting with the clock-like regulatory of previous days/years.  I just haven’t felt like it.  I haven’t felt like anything.

I’ve been inhabited by the demon Depression.  It’s sucked the life out of me.  I have no interest in anything at all.

If it weren’t for my dog I’d certainly be dead by now.  Sometimes I get frustrated by that.  It’s not like this is some passing cloud.  I’ve felt this way since childhood, with a few manic episodes thrown in so I could get something done and piss off everyone in my environment in the process.

I’ve ruined two childhoods (my own and my child’s), decimated two marriages, gained and lost more than one profession, and now slog through each day putting one foot in front of the other.  Just taking up space on the planet.  

I used to volunteer, feeding people less fortunate than I.  It made me feel good to be of service. Now that my skeleton has betrayed me, I can barely lift my coffee cup, let alone sling hash.  

I think about doing some kind of phone hotline thing, like a suicide prevention line.  Stupid.  How can I help someone else who’s in crisis, when I myself dream of going to Belgium, where euthanasia for intractable mental pain is legal?

I isolate myself.  Depression is not something to chat about.

“Good morning, how are you?”

“Fuck off.  I’m depressed.”

Or how about this one:

“How are we today?”

“We feel like shit.  How about y’all?”

“Oh, is it depressed?  Don’t wallow in it!  Put on a happy face!  The sun will come out soon.”

And other well-meaning drivel.  

“Oh, my (sister, friend, whatever) got depressed after her sixth baby, and they said it was a chemical imbalance, and she took, what’s the name of that stuff that begins with a “P,” for a whole week, and it was like magic!  You really ought to try that stuff.”

Yeah.  Thanks.

Really, the suggestions make me insane.

“Why don’t you go get some more of those magnetic brain treatments?”  –Mom

Because I get them in Canada.  My brain would freeze to the pavement right now.  If I’m still alive in the spring, I’ll brave the headache and get some more TMS.  

(Yes, I know it’s available in the U.S.  A very low-voltage wimpy version that barely surpasses placebo.  Thanks for the suggestion.)

“Why don’t you get one of those SAD lights?”–I forget whose helpful suggestion this was.

I’m in Arizona.  The light here is so bright it hurts my eyes even through sunglasses.  Do you really think a SAD light is going to help?  I have one, somewhere in one of my three storage buildings, each of which contains the relics of past lives.

The first one is 10 x 20 ft.  It contains my life from 1972 or so through 2002.  My own art, millions of family photos, my medical books (now obsolete), my general library (molded), tons of relics, memorabilia, horse stuff, VHS tapes, who the fuck knows.

Then there is the 10 x 10 foot unit with my life from Israel in it: plastic tubs full of gorgeous clothes that I used to wear every day, but in the casual States would look absurd everywhere except perhaps NYC; boxes of more books, religious; more art; and assorted personal effects.

Now there’s a new one, since my mother had all my stuff from my father’s former studio, where I lived until 3/4/15, boxed up and deposited in a brand new storage unit, so she could rent the studio out.  This one has my very personal effects in it, such as my Israeli I.D. documents, my jewelry, stuff I really wasn’t prepared to have dumped unceremoniously into boxes and carted away.

Clearly this is a thorn in my side, but it’s not the cause of my depression.

I have my family to thank for that.

My mother’s mother was in and out of the hospital because of depression, her entire life.  She suffered hundreds of ECT treatments.  Many of these were given at home.  My mother and her sister were tasked with holding their mother down while she convulsed.

My father’s father was paralyzed with depression.  Like me, he tried to outrun it a few times.  His doctor recommended he move to Florida, for the sunshine.  He did better there, except when he was overtaken by bouts of paranoia that precipitated episodes of going on the lam.  He would move my grandmother and himself from one seedy Jewish residential hotel to another, keeping ahead of some imaginary threat.  Eventually my grandmother would manage to put in a call to my father, and he would fly to Miami and somehow catch up with the fugitives.  Getting Grandpa to open the door and let him in was another matter.

There are suicides on both sides of the family.  It’s quite a genetic load.  

No one told me any of this until I was sitting in my bare room during my first hospitalization, trying to make sense out of this enormously intimate and awkward conversation, painfully aware of the fact that I had a roommate who was trying to be respectful of my non-existent privacy.  My father came to visit me just once.  He was too “shook up” seeing me in that condition.  My mother, who is always up for drama no matter what the cause, came every day, for the first two days.  After that it ceased to be exciting.  She is easily bored.

I’m not sure how long I can keep this up.  I don’t want to traumatize my son and my ancient mother.  Even more, I don’t want to leave my Biggess Doggess to suffer who knows what kind of fate.  She’s got failing kidneys and other health issues, despite being a young lass of 2 10/12.  I can’t bear the thought of someone not taking care of her.

I guess I’m not ready to die yet.  I still have what to live for, even if it’s not a love for life itself.  Even if I have outlived most of my purpose.  I wonder what will happen.

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.

Lost

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

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

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

What I received tore my heart into even smaller shreds.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I think I know.

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

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

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

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

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

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

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

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

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

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

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

Now I am lost in a sea of pain.

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

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.

 

 

Phantom Limb Pain

There’s a crazy phenomenon that sometimes happens when a person loses a limb. The nervous system thinks the limb is still there, so that the person continues to have the sensation of having it.  I mean, to the point of the former owner freaking out because they want to put on a sock because the foot is cold, but the foot persists in not being present.  This is called a Phantom Limb.

But since the limb has really been amputated, the limb also feels the pain of that, and of the injury or disease that lead to the amputation.  This can become a terrible situation if the limb doesn’t get used to being amputated and settle down.  How can you relieve the pain of something that doesn’t exist?

I just realized that I am suffering from Phantom Limb Pain.

Some of my readers know that I am caring for my beautiful Belgian Malinois, Atina, who is dying of kidney disease.  She is now 19 months old, and starting to slow way down.  I’m enjoying her delightful self for now, and I will take care of her until it is time for her to go.

I just received the final pathology report.  It is terrible.

For those who don’t toss around medical terminology on a daily basis, let me give you your word of the day:  nephron.

A nephron is the basic operating unit of the kidney.  It has three parts, which all have different essential tasks in maintaining the balance of fluids and electrolytes (like sodium and potassium) in our bodies.  In addition, special cells called podocytes keep our serum proteins from leaking out.  These are the parts of the kidney that maintain fluid and electrolyte homeostasis, in a delicate and incredibly intelligent system of checks and balances.  Any disturbance of kidney function can lead to a disruption in the system, depending upon which area of the kidney is damaged.  And that can lead to illness and death.

Atina’s biopsy shows that 90% of her nephrons are fetal, which means that kidney development was arrested before three weeks of life.  The pathologist writes that this could be due to disease or toxins being transmitted to the pup through the mom’s milk.  The remaining 10% of normal nephrons are becoming ballooned out of shape from having to process all that pee by themselves, and their podocytes are starting to detach, which is why her urine is full of protein.  Soon those few functioning nephrons will die, and then Atina will die.

I stopped by the vet’s yesterday for another reason, and just for kicks had Atina stand on the scale.  She’s gained three more pounds…of fluid.

When I first got her, she weighed 55 pounds of skin and bones.  She looked like a sick cow.  With treatment and lots of love, she put on ten pounds and was looking and acting like a normal, healthy, happy, bratty adolescent Malinois.  I started her in Service Dog training and she was doing great.  I had this spark of hope…

Then she started looking weird and puffy.  Despite treatment, her blood pressure was sky high (another kidney function thing), and she went back to drinking gallon after gallon of water, and peeing like a waterfall many times a day, and even needing to go out at night sometimes.  And her weight keeps creeping up, and her appetite keeps slowing down…

I’m glad she’s with me, and that I’ve had the honor to be her very own human and caregiver, friend and mutual aid society.  We are passionately in love.  She’s asleep now, but if she knew that I am crying she would rush to my bed and throw herself on top of me, causing various injuries.  Since I know that they are love bites, scratches, and bruises, I take them in the spirit in which they were inflicted.  And once her initial exuberance settles down, she cuddles and kisses and lets me cry in her fur.

Aside from the love injuries, I have been injured in many ways since becoming Atina’s personal angel.

I needed a service dog to guide me through the next ten or so years of my life.  Instead I got a very sweet invalid dog, with whom I fell in love, from whom I will be parted very soon.

This beautiful sick girl of mine cost me $12,000 up front, and more than $10,000 in medical expenses so far.  I have used up most of my financial and emotional resources, and at the end of the day, I won’t have a dog, and I won’t have the money, and since even now I keep myself alive by force of will, Atina’s death may sever the thread I’m hanging on.

Everyone says, “Sue the bitch (who sold you the dog)!”  Easier said than done.

Yesterday I had a telephone consultation with an attorney from the State Bar Association’s referral service.  He listened to the “short version,” told me he had no experience with cases like this but would be happy to litigate it, outlined the essential steps, reminded me that his hourly fee is $210 (a bargain, actually), that the case would cost a minimum of $20,000 to litigate, that we would surely win, that the first thing he needs to do is to examine the purchase contact and look at some other things, and that in order to do so he needs a $5,000 retainer.

Phantom Limb Pain.

Before I became a disabled person, back in the days when I went to work every evening, relished in healing the sick, lame, and halt, and also in bringing home the bacon and frying it in the pan: if someone needed a legal spanking I had only to pick up the phone, and if my own attorney couldn’t do it, he knew someone who could.  Retainer fees?  Not a problem.  Not a question.  Not required!  Don’t even offer!  They knew I was good for it, and besides, they might need my expert witness services one day…or their kid might need to be sewed up on a Sunday… But now all I have to offer is

Phantom Limb Pain

as I am cut off from myself, and I can’t get back what is gone

I can feel it, even see it, but it’s gone

And now I have to beg some abogado, please, please

If you think my case is so straight-forward, please take it on contingency, or reduced fees, or even pro bono

I have Phantom Limb Pain, don’t you see

I’m not what I once was
I find myself in reduced

circumstances

I am among the lame and halt now
As one day you yourself might be

As odd as that might seem

No one ever dreams it will be them
Believe me, Mr. Esquire, Sir, The Hon.,

no one ever

believes that it can get worse

But it can get worse

And then it can turn into

Phantom Limb Pain

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!”

Too Sick For Surgery

Sigh.  More and more and more, for this huge brave soul that enlivens the body of my sweet Atina.

As if everything else wasn’t enough, she’s begun having signs of pancreatic failure: ravenous appetite, horrendous huge nauseating stinking greasy poops that look like, if you measured them, about the same volume as what she took in.

I know these signs well, having dealt with something similar myself over the course of several years.  Rapid weight loss and malnourishment are the predictable results.

So I took her to the hospital, with the plan of explaining all this to her surgeon, and my extreme hesitation to perform surgery based on my concerns of her inability to absorb nutrients merely for her maintenance needs, let alone the 200% of basic needs that the body requires for healing after major surgery.

But as fortune would have it, her internal medicine resident showed up to check in with us prior to surgery; and after a good deal of putting our heads together about it, decided to call off the surgery (whew!) and do an impromptu clinic visit instead.

A good thing on many levels.

Atina’s blood pressure was higher than it was two weeks ago, which is bad news about her kidney function.  A bunch of blood was drawn again, basic kidney function tests plus a battery of pancreatic function tests that get sent out to somewhere.

I have been kicking and screaming about just going ahead and starting pancreatic enzymes after drawing the test.  I don’t see why she should be left to lose even more of her body by pooping it out, for the sake of academic “correctness.”  I’m thinking about this.

She did get a prescription for a medicine that will control bacterial overgrowth in the intestine, and I know from my own experience that that alone will help reduce stool volume.  But it doesn’t do a damn thing to assist nutrient absorption.

Believe me, I will not let this thing rest for long.  A couple days, maybe.  We have a recheck appointment on Friday, and might make it that long, but if I see things deteriorating even a hair’s breadth between now and then I am going to make a LOT of noise.

All of this is adding up to autoimmune disease, in my own medical mind.  A lousy prognosis.  One lousy prognosis on top of another.

I’m looking for silver linings here.

One is that my sweet Atina has become very cuddly and snuggly–leaving my arms and legs covered with gaudy blotches, since I bleed at the slightest contact with tooth or claw; and my sweet Atina is all teeth and claws, like any healthy adolescent.

Unfortunately, the very fact that she is being so clingy is a sign that she is not feeling well.  Most healthy adolescents are busy testing limits, and snuggling with Mom is the last thing on their minds.

But I treasure these moments of puppy love, and only say “OUCH!” when badly bitten, or if flailing paws with claws come way too close to my eye.

And then there is Colorado.

There is no endpoint in sight yet, so Colorado it is, and will be, until then next thing happens.  Fact is, I like Colorado a lot.  You can find pretty much any kind of terrain you can imagine here.  There are a lot of natural and man-made geologic features that are unique and breathtaking.  The flowers, the wildlife, canyons, mountains, rivers, glaciers, everything.

I guess I’ll go ahead and put in to become a resident, since I seem to live here.  I did want to winter in Arizona, mostly because mixing winter with an RV can get complicated.  But I’ve learned a lot of other stuff, so I can learn that too, if the rest of me holds up.

I like the idea that if I need some botanical medicine to treat my nerve pain, I can just waltz into the dispensary of my choice and buy some.  I don’t use that much, but in the surrounding states if you don’t have a medical card from that state, possessing ANY amount of the Herb will get you busted.  I don’t think I could deal with getting busted, so I’ll stay legal.

And wait. 

I’ve been entrusted with the love and care of this beautiful soul, so I will let her be my guide, and my guardian.  Ours is a bond of perfect faith.  How many of us ever find that in life?

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An afternoon snooze...