222

Ugh…this hits me where I live right now…..for the past, oh, about three months now, I’ve been holed up, even when traveling…..unable to leave my quarters because I can’t deal with the inner and the outer at the same time.

Depression Comix

depcom.222.col.400px

View original post

And Now For A New Idea

Faithful Readers, I have a new idea I’d like to run by you.

After my last two posts, I don’t doubt that you are saying, Oh no, what kind of awful plan has she got now???

It’s not what you might be thinking.

I’m thinking I might get an RV and have it a bit modified for people with upper body disabilities…and go RV’ing around the country till I can’t do it any more.

I hate where I’m living.  The RV I would get will have a full bathroom, which I don’t have now.  It will have a full kitchen, which I don’t have now.  It will limit the amount of JUNK I can collect….I am a professional junk collector.

I want to go exploring in my favorite part of America: the Wild and beautiful West.  Maybe even find some way to volunteer at the National Parks, so I can camp there for free!  I can’t do trail duty any more, but I can answer phones…or “woman” the Information Desk and give out maps…I’m sure the National Park Service has volunteer gigs for disabled people!

Like I have said before, I don’t intend to let this disease get me like it got my dad…but neither do I want to just sit around this dratted uncomfortable place until I freeze in mid-air like Dad did!

If I can find a way to make the rest of my life fun and fulfilling, that will mean a lot.  Yes, Dad’s life was amazing right up to the point where his disease took over his life and he couldn’t do his magical art anymore.  Then he spent five miserable years dependent on others.  That’s when my life will go bye-bye.  Not doing that, if I can help it at all.

Dad lost his life–although his body stayed painfully alive–when he was 85.  My disease is progressing about 20 years earlier than his.  And my disease is in my neck, which his never was…and thus it threatens my whole body with the spectre of quadriplegia.  Not on the menu, if I can possibly help it.

When I think about cancer, I don’t think “chemo and radiation can help you live another (fill in the blank) months, years.  I am not interested in living with poisons and burnings.  Yes, I know that many of you are Cancer Survivors, and I totally applaud your courage.

However, I do not have the drive to live that others may have.  I welcome death.  I’ve had some amazing victories in my life, for which I am intensely grateful.  But now I am faced with two terminal diseases (Bipolar and Spinal Stenosis), and my chief aim is to enjoy the life that is left to me, and to go peacefully when the time comes….please God, let me know when the time is right so I don’t miss it and end up in a nursing home for years.

So.  I told you I wasn’t going to write about THAT, but it’s on my mind, so there you have it.

An RV would provide me with comfort, mobility, and FUN!  I’m getting revved about it.

What do y’all think about that idea?

The Tipping Point: So Long, Able Body

It’s not here yet.  I’m not there yet.  But it’s getting closer.  I have to stay alert, lest it overtake me like it did to Dad, and leave me too crippled to decide my own fate.

That’s what happened to Dad.  It happened over a period of years.  I could see it because I lived far away, and when came to visit every 3 or 4 months, I could see the changes.  But one day, or so it seems, he was frozen in thin air.  His body had just frozen.  He could walk, for a while, with a cane.  His hands would not cooperate enough to operate a wheelchair, so he shuffled it around using his feet.  It was good exercise, I thought.

He tried to keep writing–he was a wonderful man of letters–but his pinched nerves refused to work his hands.  It cost his soul a lot, not to be able to write his memoirs.  (No, he wouldn’t do all the alternative things to physical writing.)

Then one day his legs stopped working.  I think he had a stroke.  He had lots of them, and caused him to have difficulty speaking, kind of like Moses, only different.

These few words about Dad serve as a preface for what I am about to tell you.

I have been having excruciating pain in my neck, due to arthritic vertebrae.  The holes in your spine where your nerves branch off your spinal cord and end up moving everything and feeling pain and whatnot–those holes that belong to me are getting calcium deposits on them, which is squishing and poking into the nerves in my neck.  Plus, the spinal canal (you know, the canal your spinal cord runs in–helpful, ain’t I) in my neck is getting narrowed, squishing the spinal cord itself.  I guess that’s why my arms ache and tingle all the time.

Today I drove the hour-and-a-half to see a nurse practitioner at the spine clinic where I get things that so far have not helped, like an injection of steroid stuff into my neck (that was fun) to medicines that allow me to sleep for three days at a time between doses.  Who needs pain meds when you’re fucking asleep?

For the past month or so my neck has been killing me to the point where bending over to pick up something on the floor gives me a jolt of pain, 8-9, sometimes 10 on a 1 to 10 pain scale.  It’s all I can do to hurry over to the bed and pack myself in pillows so I can’t move.  After a while the pain lets up, but not all the way–enough so I can get up and take some acetaminophen.  I don’t do opiates like Percocet, because they make me itch.  Every once in a while if nothing is helping–immobilization, hot packs, arnica oil, CBD oil–I’ll take one of my carefully hoarded Tramadol, a semi-synthetic opiate that relieves my pain just down to the barely tolerable level without making me dizzy or itchy.

So I saw the nurse practitioner at the spine clinic, and unlike the actual doctor of the clinic, the nurse practitioner had some very good and practical suggestions, like physical therapy with massage and electrostimulation, and a hardshell neck brace for when I have to do anything.

Since she seemed to know what she is doing, I asked her point-blank: what is the natural history of my disease?  Us medical people call the usual course of an illness to be its “natural history.”  I like that, because I have always loved Nature, and have been an avid Naturist–no. no, I mean Naturalist–all of my life.  So I asked her about the natural history of my disease, and she said “Not good.”

“What do you mean, “not good”?

Well there was a point where surgery–

“Surgery?  What, they take a Dremmel (an all-purpose engraving and grinding tool) and ream out the foramina (holes where the nerves pass though)?”

Yes, in fact.

“How good is the surgery?  What’s the success rate?”

She shakes her head.  Not good at all, she says.  About like lower back surgery…….which stinks.

But, she says, you might consider it when your hands get too numb to work.

My whole body, including my mind and soul, was numb as I walked out to the parking lot.  “When,” she had said.  Not if.  When.  I kind of thought that’s what’s in store.  My left arm, the one where the nerves are more severely damaged, “goes to sleep” quite a lot, and it aches and tingles pretty much all of the time.  It’s definitely progressing.

And then we come to my right shoulder.  The end of my collarbone that attaches to another bone in the shoulder is so gnarly with arthritis that my last steroid shot not only did nothing, but the difficulty of getting the needle into the joint (because the joint is almost closed up) has made the whole thing worse.  I have constant pain and limited mobility, and probably will end up having the end of that bone sawed off, which is supposed to restore mobility.

I have firmly and completely decided that I am not, God willing, going to let myself go the route my father went, completely dependent on others for years.  And unlike Dad, I don’t even have anyone to care for me should I be suddenly a body with arms that don’t work.  I would be in a nursing home until I died.

I’m watching very carefully for that tipping point, the one between independence and dependence, and praying it doesn’t sneak up on me.

As one of my Physical Medicine professors used to say–he was in a wheelchair due to MS–everyone is TAB–Temporarily Able Bodied.  And so it is, with me, anyway.

I used to love to swing an axe and split wood all day long, or take on an unruly horse, change a tire on my 3/4 ton Dodge Cummins Diesel truck…no more of that for me.  I had to trade the truck in for an easy-to-drive car.  My hands only hold out for so long at the keyboard before they seize up and I have to stop.  I can’t play my banjo anymore.

This is me playing my 1897 Fairbanks & Coles fretless banjo in 2005:

 

Life is getting less and less attractive to this formerly physically active person.  I spend virtually all of my time in my recliner, which is the only place my body doesn’t scream at me.  Hell, my place has not been vacuumed for over a year, because I can’t look down or look up or lift anything over two pounds.

It’s getting closer.  I have to be careful not to miss the tipping point.

 

The Agony Of Pregnancy Loss

This is going to be another heavy hitter, Dear Readers.  Please consider whether this is good for you to read before proceeding.  It contains graphic descriptions of a miscarriage, surgery, and references to abortion.

I’ve given myself away, but then this is not fiction.

My medical school had an agreement with a VA (Veterans Administration) hospital, where third- and fourth-year medical students could rotate through and get some up-close-and-personal experience being on the front lines.  Rather than standing on a stool (if you were short like me) holding retractors in the operating room, we were taught to actually operate.

And in the medical wing, we learned by doing, and by working closely with the attending physician.  This was much better than standing at the back of a crowd of students, interns, and residents on ward rounds in the private hospital.

I had lots of harrowing adventures at the VA.  I loved it.  Everything was edgy and often dicey.  The patients were high morbidity.  The doctors were all foreign medical graduates, some of whom were the best docs I’ve ever worked with, and some of whom…well, I sure wouldn’t want them working on me.  You just never knew, from day to day, what you would end up in the middle of.

I loved surgery.  Part of that was Dr. Duy, a brilliant Vietnamese surgeon who taught me how to tie one-handed knots down in a hole (in those days, gall bladder surgery was done through an open incision, and you were literally working in a hole up to your wrist).  He taught me how to amputate a gangrenous leg–we had to do that a lot because of the diabetic veterans who were “drinking men” and didn’t take care of themselves.  (That was one of the intake questions:  “Are you a drinking man?”  It was crucial to know, because if he was, if deprived of his alcohol he might go into DT’s and die on us.  For “drinking men,” part of the admission orders were two beers or two shots of rye whiskey per day, more if indicated.)

I dreaded operating with Dr. Chung, a Korean doc who didn’t speak much English and was a clumsy brute compared to Dr. Duy. He did a lot of abdominal surgeries looking for metastatic cancer.  In those days the way you did that was by opening somebody up from top to bottom, and taking biopsies from all the major organs, to send to Pathology.  Then you would stand around in the freezing OR, hugging yourself and jumping up and down until the frozen section came back.  After that you either did or did not take out more stuff, and finally you closed the abdomen and took an x-ray to make sure you hadn’t left anything in there.

My job was to close the abdomen.  There weren’t surgical staples back then, or any of a million conveniences we have now–just a bunch of different sizes of suture material, either dissolving or non-dissolving.

Dr. Chung would walk away, stripping off his gloves, and I knew that I was going to close.  It was no easy task for a small person, especially if the patient was large, pulling the wound together and tying the knots, with nobody to put their finger on it to keep it from slipping.  Yes, it was that simple.

Dr. Chung used to tell me to hurry up and just to make sure I did, he would tell the anesthesiologist to wake the patient up while I was still working!

The reason I’ve gone into all this is: One day I walked into the operating suite and smelled the distinctive odor of halothane gas.  That is what we used in those days as the anesthetic.  I’m sure some or even most of you have smelled that smell.  There is nothing like it.  It triggers my PTSD just thinking about it.

I walked into the OR and asked the scrub nurse, who was scurrying around setting up for the next case, what the deal was with the gas.

“Oh, the anesthesia machine is leaking,” she said in mid-scurry.  “We have a requisition in.”

Uh-oh.  That meant it might get fixed today, or next week, or next month…

So we operated with the doors open.  I tell you, we were all half-anesthetized.  I hope those patients did all right, because I don’t remember a thing.  I spent two weeks half-gassed to death, and then my rotation ended and I could breathe again.

But not the baby I was carrying.  I was married, and this was my first planned pregnancy.  I was 16 weeks along, and I loved the little flutter in my tummy with all my heart.

Then one day, at the end of my surgery rotation, the fluttering stopped.  The bleeding began.

I called my OB doc.  He put me on strict bed rest.  I was torn between being panicked at the prospect of losing my baby, and being panicked because my own OB rotation was supposed to start in a few days.  But the bleeding got heavier, and finally waves of pain had me curled into the fetal position, panting.  Then something warm and wet came out in a gush of blood.

I sat up and looked.  It was a little alien, wrapped in its delicate capsule.  All of it was there.  I could see the tiny limbs, and the beginnings of a face….I wrapped it up in plastic wrap and took it to my OB.  I don’t know what they did with it.

I can’t begin to describe the grief.  I think losing this pregnancy unleashed all the grieving I hadn’t been able to do for the abortion I had suffered 13 years before.  I was overcome, and could do nothing but sob for two weeks.  Then I picked myself up, put on my whites and went to my OB-GYN rotation.

I knocked gingerly on the attending’s office door.  She was the daughter of an OB with whom I had done a rotation as a 3rd year student, and we mutually hated each other.  The daughter was worse than her father.

“Yes, come in,” she said to my knock.  I entered.  She did not offer me a chair.  In fact, she did not even look up from her charting.

“I heard what happened.  It won’t affect your grade,” was all she said.  Then, awkwardly waiting for some other utterance, I perceived that there wasn’t going to be any, so I left her office.

I was met by a nurse in scrubs, who said “Come with me.”  I followed her into a room where a woman was lying on a table, her feet up in stirrups, a stainless steel bucket on the floor between her legs, and what looked like a large suction hose…..

“Go ahead, sit down,” commanded a senior student.  “You’re going to do this one.”  I looked from the apparatus at the bottom of the table to the ashen face of the Hispanic woman at the top…

“Is this what I think it is?” I whispered.  The senior student nodded.  I threw up in the bucket and ran out.  I ran all the way home and collapsed on the bed, hysterical.  My husband came home and found me that way.  It was the only time I ever saw him in a fury.  I know that he went to the dean, because on another occasion when I was stuck holding retractors for the OB father and daughter combo (I had to repeat OB after that episode), they skewered me about my husband going to the dean.

All these years later, I just can’t, in my wildest nightmares, imagine expecting a woman who had just lost a wanted pregnancy, to go on abortion detail.  I know there are many things more cruel than that in this world, but for me, at that moment, I would rather have suffered a horrible death than to perform an abortion.

All the while I was thinking of that woman.  I found out her history, why she was there to get an abortion: she was a Mexican migrant worker, she already had six children, and her husband had threatened to punch her in the stomach if she didn’t abort, because six children was enough for him.  Birth control pills were beyond her reach financially, and her husband refused to use condoms.  So it was she who bore the consequences.

I firmly believe in a woman’s right to control over her own body.  If that includes abortion, who am I to judge?  When Rebecca, who was childless at the time, said “Give me children or I will die!”  Isaac replied, “Am I instead of G-d, that I can give life?  Go and pray!”  I too feel that way:  Am I instead of G-d, who gives life and brings death?  I am just a mortal human, trying to feel my way as best I can.

As it says in Ethics of the Fathers (a Jewish text), “Judge not, lest you also be judged.”

Compassion, Not Judgement, For Girls Like Me

I have been unwillingly sucked into a Facebook conversation with the wife of an old and dear friend.  She loudly condemns abortion, and calls everyone who has had one a “murderer.”

In that case, I guess I am a murderer in her eyes.

At age 16 I was drugged, dragged into a dark, damp basement, and brutally raped.  Then the same rapist started “sharing” me with his friends.  I finally escaped, onto the streets, where I traded my body for food, shelter, and sometimes a five dollar bill.  I was in a state of dissociation that has followed me down the years–45 years, to be exact–as of this coming April 22.

This righteous lady crows that she was also raped, and managed to have her baby, with the help of my friend.

Lucky lady.  I had no friends at the time, nor anywhere to turn.  I was homeless, and knew that my baby would be taken from me by the state if I had her.  I’m sure it was a “her.”

So I took the only path that I could see, and I had an abortion.

It was horrible.  It turned out to be on the the last day of the third month.  It traumatized everyone, including the doctor who did it.  On my follow-up visit to the hospital, he accused me of “having sex irresponsibly and then getting rid of it.”

I could not reply to him.  His judgmental attitude triggered feelings of my mother’s constant judgment and criticism, and it rendered me speechless.  I took his verbal thrashing and went away feeling like a kicked dog, along with the terrible sadness of pregnancy loss.  I had already felt the little flutter of life, I knew I had killed my baby, and I was being castigated for taking the only path open to me.

A few days postoperatively my breasts swelled up and started leaking fluid.  I made a panicked call to the medical resident who had performed the abortion.

“You’re lactating,” he said coldly.  “Buy a tight bra.”

“Lactating.”  I had to look that one up.  “Producing milk.”  Oh no.  More grief, fueled by the physical evidence of no baby.  And I bled profusely, because of the lateness of the abortion.  Money for pads there was none, so I relied on rags ripped from cloth things I found in the dumpsters, that I washed by hand without soap, because there was usually no soap in the public restrooms where I washed my hair in cold water, and rinsed out my underwear when they got too stiff to be comfortable.

“Tight bra?”  I didn’t have money for a 25 cent hamburger, let alone any kind of bra.  So I leaked and ached for a couple of weeks till it went away.

Oh God, those were horrible times.  And yet, they were nothing compared to the abuse that drove me from the parental “home.”

Sure, I could have gone to one of the “homes for unwed mothers.”  One or two of my classmates had suddenly disappeared, only to return several months later, depressed and bereft, stigmatized and avoided.  Our mothers strictly forbade us to socialize with them.  One of them whom I knew well suicided.  I could not bring myself to go that route.

Yes, I had an abortion.  I don’t regret it.  I’m sad about it, always will be, and wonder what would have happened if I had had my baby.  She would have been almost 45 now–what would she be doing?  She would not have had much of an upbringing, if I had kept her the way this lady did.  I had no resources myself.

Nowadays there are many options for girls who get pregnant: open adoptions, where the girl can participate in her child’s life, and in the adoptive parents’ lives, almost like another child in their family.  There is foster care, which can help a girl grow up while her baby is in a safe place (usually!).  There are many programs that support pregnant teens with educational and job skills while they complete their pregnancy, so that they can support themselves and their baby and not be dependent on their own families or the state for sustenance.  And of course there are the many grandparents–more grandparents than birth parents are willing to help their grandchildren through an accidental pregnancy and with helping to raise the child, for multiple reasons.

So I ask, don’t judge me for the decision I made as a child.  What I need is compassion.  Even if you are vehemently against abortion for your own reasons, and would never have an abortion in your own life–please be kind to those who are in desperate straits, and choose abortion because that is the only avenue they can see at the time.

I Understand You’re Right

Some people just want to be understood.

Some people just want to be right!

What’s not to understand?  If you’re right, you’re right.  Right?

I’ve been scratching my head a bit lately, wondering why it is that for some people, it is crucial to Be Right.  Doesn’t matter about what…..they’ve just…got…to…be…RIGHT!

Take, for instance, the computer geek that I recently dated for, like, 90 milliseconds.  He wrote me a whole email about the fact that I was mistaken about the date my antique Mac was released.  Whew.  I am so glad that I didn’t go around for the rest of my effing life with that misconception.  But he was right.  He.  Was.  RIGHT!  And I told him so.  I am wrong, and you are right.  And he was happy, and satisfied, and had a nice warm feeling in his belly.  Good-bye.

And then there was my weekly aggravating conversation (if one could call it such) with one of the people who call me every Friday, in honor of the Sabbath; his name shall not be mentioned, so instead I will call him Bob.

Now, Bob is a very good person.   A bit selfish, yes: always complaining that he gives more than he gets, always picking apart every woman who comes his way and then moaning about how God isn’t sending him his wife…but the thing that sticks in my craw is that the man Must.  Be. Right.

It hit me today, as I meandered about the kitchen with the speakerphone on, making myself breakfast at 2:30 in the afternoon.  He kept on saying, “But you don’t understand!  Yackity, yackity, yackity, yack….”  (It does not matter what we were talking about, because Bob will only ever argue about it anyway….)

“So,” I mumble, in between bites of egg……

“You’re mumbling!  I can’t understand you!”

“Yes, I know I’m mumbling.  I’m trying to eat my breakfast.”

“Oh, yes, breakfast.  I ate breakfast too, this morning.”  I am so happy that Bob had a good breakfast.  It leaves me in tears.

He is in a much earlier time zone, relative to mine.  I considered mentioning that it was 2:30 in the afternoon here, just for interest, but tossed that out, as it probably would not have drawn any interest on Bob’s part; and it would rob me of precious seconds in which to eat my egg while it was warm.

“Good, good.  I’m glad you ate breakfast, Bob.  May it be in good health.”  I took a bite of toast.

“What’s…that…crunching noise?”  He said accusingly, with no small hint of suspicion.

“A time bomb.  I’ve affixed it to your ear, and in ten seconds…”  Sigh.  No, I did not say that.

I changed the subject to one that I know is dear to his heart: the Splitting of the Sea.  Like in the Bible, right, when the Sea split to let the Children of Jacob through, and afterward it drowned all of Pharaoh’s armies?  We like to argue, um, talk about that one. There are jillions of ways it can apply in one’s life.  I like to pull that out when we talk, because I know it’s one he can go on about forever and I can get my breakfast eaten and the paper plate thrown away–I am not yet well enough to face dishes–without my having to say a word.

In my constant quest for learning something by which to earn a living, I came upon a sage who taught me that there are two broad categories of human beings:

–people whose only wish is to be understood;

–and people whose only wish is to be right.

It hit me like a ton of bricks today, while listening to him on the speakerphone whining,

“But you don’t understand!  You don’t understand!   It’s not like this, it’s like that!

“You’re right,” I said, having finally understood.  “You’re right!

“What?”  He said, sounding a bit lost.

“I said, you’re right!  You are absolutely right!”

By this time, I don’t think either of us remembered exactly what it was that he was right about, but it seemed to give him immense satisfaction to know that I knew that he was right.  There was a satisfied silence on his end of the phone.  Then I knew I was understood, which is, to me, the object of life: to be understood.

He understood that I understood that he…is…RIGHT!

“Well,” I lied, “Gotta have both my hands now, to do the dishes!”

“OK, I gotta go too!”  He sounded so happy, it gave my heart wings.  To fly away.  I hung up, feeling light and happy.  Now I understand.

Next week, I hope Bob will still remember that he’s right, and not need me to remind him.

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

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

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

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

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

Earth Day, April 22, 1970.

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

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

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

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

The details of that date have been published elsewhere.

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

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

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

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

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

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

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

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

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

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

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

I remember his voice as he hissed in my ear:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Go And Rub My Head

…And let the hurt things out.

That’s what woke me this morning:

….You know without a doubt

Go and rub my head

And let the hurt things out

The kernel of a song.  My third “good one.”  That’s how they come, in my dreams.  They wake me up, I write them down.

This one came in a gush of tears.  I grabbed my voice recorder and whispered the snatch of song along with its tune and arrangement (they all come as a fairly complete stubbed-in piece to be completed while awake), collapsed back into bed and hours later I am still crying.

Last night I was up till I couldn’t stand it any more, IM’ing with a friend back in Jerusalem.  His wife died not long ago, he’s still young, he’s got a bunch of kids…..he’s so, so lonely…..he just wants someone in his bed to keep him company and drive away the chill grey of the dawn.  Will I come back and just be his friend and warm him?  Oh, he knows I’m old and sick (he’s young enough that I am old!), but we are such good friends and…….

I know, I know….don’t worry, I am not offended.  You know that I can’t do this for you….Yes, I know.

I have acted this role for so many, many people over the years.

I have been the Temple Prostitute, the Holy Woman who heals through the balm of Sacred Sex.

How many souls seared with the pain of loss, loneliness, lost-ness, have I soothed and set back on their way, smiling and breathing, with a word of thanks and freedom in their step?

I am glad for them.  I am grateful that I have been given a role in their healing.  I watch them go, and I don’t let them see.  Don’t look back, for I am naught but a pillar of salt tears.

What about me, I ask my Creator.  What about me?  Do I get a reward here, ever?  Or do I die alone, knowing that I have helped….is that my reward?

I’m sure that my reward will come, but not in the form that I would dearly love to have.  I haven’t merited that.  Not this time around.

I am of the lineage of Dina (Deena), daughter of Leah, the thirteenth child born of the loins of Yaakov (Jacob).  I will tell you more about her in my next post, G-d willing.

But for now, this soiled dove must tuck her head under her wing and weather the cold alone.

When Does Life Become Unlivable? Thinking of Frida

Dearest Readers, rest your minds, I am not there yet.

Today is rainy and soggy.  The ground is thawing out in our Spring Thaw, which is a prelude to actual Mud Season.  I grew up mostly in New England where there is a time of year called Mud Season, generally starting the end of February and going on and off through March.  It’s a beastly time because everything from horses to tractors–not to mention cars and pickup trucks–gets bogged down in the mud.  You can’t get any “purchase” (traction) because under the foot-and-a-half of mud is the frost line from the winter, which will stay frozen even into May, as any New England gravedigger will tell you.

What this weather means for me is misery.  My hands hurt.  My hips hurt.  My neck is even now packed in pillows so I don’t forget and move it.  Et cetera, ad nauseam.  Oh and my asthma is suffocating me.  Go away, damn it, and let me just LIVE!!!

I saw my orthopedist this morning for another cortisone shot into my right shoulder.  Unlike last time, when the needle slid in so easily I didn’t even feel it, he had to do quite a bit of wudging around till he was able to get the needle into the joint.  It hurt.

I remarked on this, in a casual tone, like this:  “Fuck a duck, Doc, what the hell are trying to do to me???”

Actually I did not frame it in those terms, more because I know that all 6’5″ 300 lb of him are made of good nature and kindness–he and his saintly wife have, on top of their own eight children, adopted eight more, all of them older children who needed a good home.  Even if he wasn’t on the short list for sainthood I would still try to maintain a modicum of dignity and say something more like, “Sonofabitch, Doc, that hurts!”

He grinned and mentioned casually that I am certainly going to need that shoulder operated on at some point, as the joint is proliferating with calcium deposits that will need to be “scraped off” (oh, I don’t like the sound of that!) so they don’t tear up the muscles.

Here my vision goes blank and all I can see is my father lumbering along with his elbows stuck out to the sides like a chimpanzee, because both of his shoulders had frozen up….eventually becoming bone-on-bone.  He was literally stuck, couldn’t do anything with his hands–and he was a ceramic artist.  Hell on Earth.  And it didn’t stop there.  The arthritis ate his spine, just like it’s been slowly but surely eating mine since the 1980’s.

I had emergency surgery on my neck in 1987 for a ruptured disc that was pressing on my spinal cord.  Over the next 3 years I ruptured 4 more.  The spine surgeons proposed installing steel rods on either side of mine spine–no thanks!  I’m a dancer, a horse-and-dog trainer, a hiker, an aspiring Yogini.  A rigid spine does not suit my lifestyle.  So I spent 12 months in a Minerva Jacket, which is a hard plastic shell that the brace shop guy molded directly to my Stockinet encased torso, from just below the armpits to just above the groin, so that I could kind of sit.  It had Velcro fasteners in front.  I was to be encased in this walking tomb for 23 3/4 hours a day–with 15 minutes off to bathe.  I admit that I had to take the damn thing off at night.  Nobody could sleep with that thing cutting into your skin no matter how many layers of cast padding, etc., they fixed up for me to try to make it more comfortable.  I even coaxed the brace shop guy (“You have a perfect hourglass figure…!  He crooned, while I was immobilized in plaster yet again…stupid sod, I thought, only worse) into punching hundreds of 1 cm holes in the thing when it got to be summer and I was overheating in it.

Yah.  I spent that entire year standing up 120 hours a week–my work week–because the tension on my spine from sitting down sent the nerve pain all the way into my feet, and all the way into my hands.  But I soldiered on.  I refused to let the pain stop me.  I was young, and had the iron will that sustains my people.

Look, I follow a lot of people who have it much worse than I do.  Much, much worse.  And they keep right on living, kvetching now and then as is their right.

But I am staring into the face of a dilemma, which is:  I can’t work if I can’t look down.

Say what?

I can’t work if I can’t look down.  Not at my regular streams of income, at any rate.

I had to give up practicing regular medicine, not exclusively because of my brain, which wasn’t doing so well either but got right-side-up very quickly once I got the proper diagnosis and the proper meds, but mostly because my hands gave out due to whatever it is that is eating away at my connective tissue.

So I relied upon my acupuncture training.  Palpating meridians and slipping needles into the right places takes no strength at all.  But damn it, the last few treatments I’ve done, I swear I’ve squawked as much as my client!  I can’t look down without incurring an acute, unremitting ache that spreads into my shoulders and down my arms.  Nerve pain.

Writing.  I don’t sell much yet, but then I haven’t made much of an effort.  I get going with writing and at some point my hands seize up and won’t work at all.  I am experimenting with Dragon Dictate.  It is a pain in the arse, but many people swear by it (I swear at it, cliches be damned!).  I’m starting a proofreading and copyediting business.  That should be a good income stream, if I can market it successfully.  There must be a way to mark-up copy using Dragon or something, right?  At least I can get my computer at eye level.  God, I can’t stop thinking about Frida Kalho.

Money.  At the moment I’m fine.  I made one single good investment in my life, which sustains me now.  That stream of income goes away the moment I turn 65, if I make it that far.  I’m socking away as much as I can, but one little bit of extra expense can throw me seriously in the hole.  It’s unsustainable.  I have to find another way of supporting myself.

This is where the equations meet.  I cannot live as an impoverished cripple.  Please do not play the “Oh, no, you’re going to be just fine” game.  I get that enough from people I live around.

The truth is, I am not and will not be fine.  I have two progressive diseases, and if one doesn’t kill me, the other will make my life a living hell, just as it did to my father.

Dad didn’t want to live like that either, but he got taken by surprise.  It was as if he woke up one morning mostly paralyzed.  He was too bunged up to even take his own life!  So he lived another 5 years in unrelenting pain, totally dependent on the kindness (or unkindness, as the case often was) of others.

When we were alone he would ask me, “How much would it take?”  He was referring to his insulin: how much would it take, to take him out of his misery?  I could not, would not tell him.  He would smile sadly, saying “I know you can’t tell me.”  And we would change the subject.

Gentle readers, there will come a time when those two lines intersect: the downward spiral of my health and productivity, and the linear decline of my ability to sustain myself with food, shelter, medicines, and everything else one needs.

No.  I do not want to enter a nursing facility.  Neither do I want to be dependent on others, which is convenient because there ARE no others to be dependent upon.

I do not want to be locked into a crippled body the way my father was, until he died an excruciating death, screaming out his last hours on earth through blood-filled lungs.

I pray that I will know the right moment.  I pray even more that if there is a Deity, that he/she/it will take me out of this life before I have to make that tough decision.

Pray with me now, dear readers.

Pray that I get to dance at my son’s wedding.

Pray that I get to hold my first grandchild.

Pray that I get to have a sweet, gentle kiss of Death, and go Home before I have to make that tough decision.

Frida’s last diary entry, the night before her not-entirely-accidental death, went something like this:  “I hope my end is joyful, and I hope to God never to return.”

The Heartbreak of Dementia

I am such a mess these days. Suddenly the waves of grief roll over me. They knock me down and I feel like I am drowning in tears. I can’t even write, but it seems that other people are feeling the same, so I will pass their beautiful pieces on to you. I hope you’ll be patient with me while I try to keep my balance in these deep waters. Dad only left his body on October 2nd, 2014, so I need to cut myself some slack while these waves wash over me. Blessings to all of my wonderful readers, may you have the strength you need to navigate your own dark days, and may bright days light your way so you can find your way back.

Before Sundown

                                                 fotolia_37876666_handsyoungold1

by C.E.Robinson

This small woman grips the worn strap of a large black purse tucked at her side, and leans forward in the rocking chair.

Her gnarled fingers trace tiny rose petals in her skirt as if to find a path back to her life; the aging face of her daughter, her husband’s death, her 90th birthday party, her flower shop.

She sits in the same spot every day, near the entrance door, waiting for husband and daughter to take her home. The daily vigil stops when I call her name,

Ida Mae, let’s go back to your room and look at the photos of John and Olivia, and one we took last week with all the nursing staff at your ninetieth birthday party.

I visit often, hold her hand and tell her “back when I was a little girl” stories, she told me over the years. Triggering a…

View original post 153 more words