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 Shunamite Woman and The Rejection of Suffering

I often get replies and emails from people telling me how fortunate I am to have a life rife with unfortunate events.  I usually trash these well-meaning yet invasive, even brazen, suggestions that my suffering is in fact a blessing.

First I would say that compared to most of the suffering people I know and interact with, mine is petty, and I know it.  But it’s MY suffering, and I will not abrogate my right to express how I feel about it.

I would like to draw your attention to an illustration in the Bible that shows us that even the strong can suffer greatly, although they might not show it to everyone.  There are many such illustrations in Scripture, but this one has always caught my attention: the story of the prophet Elisha (student of Elijah) and the Shunamite woman (Shunam is a place-name): Kings II 4:11-37

True to a common theme in the Bible, the Shunamite woman was childless, and the Man of God (Elisha) caused her to conceive and bear a son.  The son grew and went to the fields with his father, and suddenly cried out “My head, my head!”  And fell down senseless, and his father’s attendant carried him to his mother.  His mother held him on her lap until he died, and then she carried his body to the attic room where Elisha was accustomed to stay, and she laid him on Elisha’s bed.

Then she took a donkey and rode up to the cave of Elijah in Carmel (I have been there and it is on the side of a cliff, no small feat to arrive there).  She called out Elisha and said, “Why did you give me a child if it was just going to be taken from me?”  And she threw her arms around his knees and vowed that she would not let go until Elisha came with her.

Which he did, and found the dead boy lying on his bed.  First Elisha told his servant Gehazi to lay Elisha’s staff across the child’s face, but nothing happened, so Elisha stretched himself out on top of the boy and blew into his mouth.  Nothing happened, so he walked around the house, first one way, then the other, and then repeated the mouth-to-mouth until the boy sneezed seven times and sat up.  Elisha said, “Pick up your son!”  So she fell at his feet in gratitude, after which she “picked up her son and left.” 4:37

This story illustrates that suffering does not always show on the outside.  Elisha knew that the Shunamite woman suffered because she had no child; and when her child died and she went to Elisha, she said, “Did I ever ask for a child?  Did you give me a child just to mock me?”

“What, is this some cruel joke you have played on me?”  says the Shunamite woman.   Elisha had nothing to say to that, so he had to come with her.

This is all very mysterious, and full of implied questions and gaps in logic.  The answers to the many questions raised here are addressed in the Gemara, the huge library of Jewish commentary and law.  One set of the books of the Gemara take up entire walls.

The Gemara is full of stories like the one about the woman whose child dies on Friday afternoon (the Sabbath begins at sundown on Friday nights).  Not wanting to destroy her husband’s joy in the Sabbath, she waited to tell him about their son’s death until after the Sabbath, all the while acting as if there was nothing wrong.

I heard of a great scholar in my neighborhood whose wife died on Friday afternoon, and when the Sabbath came in he rejoiced, ate and drank and sang like usual, until the end of the Sabbath, at which time he sat down on a low stool and mourned bitterly.  This he did for the Shivah week, the week after her death, and the following Friday (for Shabbat is not counted in the seven days of Shivah) he got up from his stool, bathed and changed his clothes (part of the intense mourning of the Shivah week is that we don’t do these things), and rejoiced in the Shabbat when it came in.

There is a book put out by the Breslov brand of Hassidim called the “Garden of Emunah.” emunah meaning “faith.”  Since the Breslov sect’s founder, Rebbi Nachman of Breslov, taught (in the 17th century C.E.) that we must never despair, his followers often interpret that to mean “always be happy, never be sad, and depression is a depraved state of mind.”  This book, “The Garden of Emunah,” is filled with anecdotes about horrible things happening to children, and awful illnesses happening to mothers of 12, and the theme is that they all took it as a blessing from God that they got to suffer in these ways.

I am not that holy.

If that’s what it takes to get to….wherever…..it’s like, OK God, these humans are telling me that You don’t give me anything I can’t bear.

Um, let me let you in on a secret.

You made me, right?  And You made the shoulders that are supposed to bear my burden.

Yeah, yeah, I’ve heard the part about how You have wide shoulders, and all I have to do is give my burdens over to You, let go and let God, etc., but let me tell You, Boss, how long to I have to throw myself on the ground and cry out to You before something gives?  Am I a cruel joke, that you’ve created me and now you play with me like a cat plays with a toy?

Elisha, Elisha, where are you?  They say that Elijah the Prophet can appear anytime, disguised as anyone, especially a beggar.  I am certainly a beggar, but I am no Elijah.

I climbed up the cliff path to his cave in Carmel, and I inserted myself into a niche in the deepest part of the cave, and I prayed, and I went into another world.  I lost track of time, and almost missed my ride.  Four years later, I received a healing from something physical, Hallelu-Yah.

I have given up praying for my mental illness to be taken away.  I think of King David and King Saul, both of whom were mentally ill until their deaths.  Saul lost his kingship because of a manic act of disobedience to God.  David’s cycles of elation and crashing depression are clearly written in the Psalms.  Samuel I also illustrates the craziness of both Saul and David, as elaborated in the link above.

So to all you bearers of Sweetness-And-Light, please enjoy your easy lives and don’t envy those whose burdens appear to be heavier than yours.  As a physically disabled friend of mine says, “You are all Temporarily Able-bodied.”

I would add, “You are all Temporarily Sane.”

Here There Be Monsters

When I was a little girl, the space underneath my bed was rotten with monsters.

I had to take a running start to make the three-foot leap into bed, so that a scaly hand or tentacle would not snake out and snag me, dragging me into the dark waiting maw, where they would all fight over my little body, tearing it to shreds, and that would be the end of me.

Now I’m finding that that leap is impossible; it’s futile; the waiting monsters are licking their chops.

My dad is declining rapidly.  He’s been hallucinating, confusing familiar sights and sounds with threatening nebulous images.  Well, he IS an artist, and my favorite show of his was called “Fantasies and Daydreams.”  And now his imagination creeps up on him from behind, casting veils of illusion over his senses.  He dozes, and sudden terrors trigger his fight-or-flight response: he flails with hands and feet, and today twice pitched forward, and would have launched himself out of his wheelchair face-first on the floor, had I not been right there to lay a reassuring hand on his shoulder and tell him it’s OK, nothing is going to harm him.  He wakes from these fits, thank God, when someone intervenes.

The hospice nurse brought up the possibility of giving him a small dose of Haldol, a major tranquilizer and antipsychotic, but my mother voted it down.  She’s worked with the elderly for most of her life, and seen Haldol used as a way of drugging “problem residents” in nursing homes, so that they cease to be a trouble to the nurses.  I’ve tried to explain that the idea here is not to drug him into a zombie, but to relieve him of horrible experiences that are eroding the little quality of life he has left by transforming the music he loves into threatening voices, and the beautiful forest where they live, which has always been an inspiration to him, into a hall of shifting and changing faces, leering with evil eyes and gaping mouths.

I think she will reconsider the Haldol shortly, if for no other reason than to relieve herself of the exhaustion of constant vigilance.

Last week he even got out of his hospital bed somehow, in the middle of the night, and must have wriggled across the floor–he can no longer walk, and he can’t control his arms and legs enough to crawl–and ended up wedged between the sofa and a chair.  The only reason my mom found him at six in the morning is that the upstairs bathroom was being worked on and she had to go downstairs to use that one.  And she heard him moaning, and there he was on the floor.

The drill now is that when he ends up on the floor, we call Hospice and they decide whether to send over a nurse, or to call the First Responders to look him over and get him back into bed.  That is what happened in this case, and my mom said they were very rough and literally dropped him on the bed, didn’t bother to get him pulled up onto the head of the bed but left him with his feet hanging over the foot of the bed.  Mom tried to shift him up, but couldn’t do it, so there he lay until the morning attendant arrived.  Dad was so worn out by the whole process that he was unable to even sit propped up that whole day, and besides, he had hit his head again and was really “out of it.”

In the past, when those scenarios occurred, we would call the ambulance and he would be taken to the hospital, and we would spend an anxious and exhausting eight hours waiting for the CT scan and all that to be done, and he would either be discharged home or admitted for observation.  Now that we’re on Hospice, we don’t go to the hospital any more.  We’ve all agreed that we are at the end of Dad’s life, and the aim is to make him as comfortable as possible as we wait for the end.

It’s devastating to see the man to whom I have compared all other men, and found them all wanting, wasting away before my eyes.  I know I’m not the only one to have this experience; and compared to many others, his deterioration is blessedly mild.  He is not in some hospital hooked up to machines.  He is in pain, but it’s controllable, and he’s able to sleep most of the time, day or night.  He still recognizes me, and we still have our “le’chaims” every afternoon.

Today was different, somehow.  I think he was exhausted by the hallucinations and terrors.  He had trouble holding his little whiskey cup, one he had made himself (we always have our whiskey out of these cups), and the liquid didn’t always make it exactly into his mouth.  The right side of his mouth droops from a stroke he had early on in this process, and his food and drink often make their way down the resulting crease into his beard.  My little dog Noga loves to clean his face, if the opportunity arises and no one intervenes–just the way she loves babies, because they usually wear most of their meals on their faces and hands.

Mom has been sick for months.  She’s been very short of breath, breathing at a rate of around 30 breaths per minute.  Normal is 12-14 for an adult.  I’ve been hounding her for months to go get a chest x-ray and pulmonary function testing.  Finally she started wheezing badly and her girlfriends began to make comments, so that propelled her to make an appointment with the “doctor.”  I put that word in quotes because the person who wears this particular MD is, in my experience, completely incompetent.

True to form, the “doctor” ignored the fact that my mother told her (at least, she SAID she told her) that this has been going on for months and months, and possibly over a year; that she has lost weight, and has trouble sleeping because of shortness of breath.  She even has to stop halfway up one flight of stairs to catch her breath.

So she did get an x-ray, results to follow, but was denied the pulmonary function testing that I feel is mandatory under these conditions.  Instead she came home with a prescription for an antibiotic and a course of steroids.

The steroids will make her feel better regardless of the cause of the chest issues, but will not address the underlying pathology.  And it will increase her baseline irritability and labile behavior–not good.

In medicine we have this thing called “differential diagnosis.”  It’s a way of sifting through all the things an illness could possibly be, first casting a wide net and then crossing things off the list as they are ruled out, either by the process of logic or by test results, and hopefully a combination of these, along with a dose of clinical know-how, and the faculty of observation.

So in the years that I have been observing the evolution of this process, I have whittled the possibilities down to two:

1. Cancer

2. Cancer

3. Restrictive lung disease

I’ve ruled out COPD (Chronic Obstructive Pulmonary Disease) because that is always accompanied by cough, usually productive of sputum, which she does not have.

She did smoke in the past, approximately 40 pack-years (the number of years smoking times the number of packs per day), but quit about 40 years ago, so smoking-related lung cancer is unlikely.  However, there are lung cancers that have nothing to do with smoking, or are made more likely by a person having been a smoker in the past.  I know the common wisdom is that after a person has stopped smoking for a certain number of years, their risk of cancer is as if they had never smoked, but I have never believed that, having seen otherwise in clinical practice.

Restrictive lung disease happens when, for some reason, the lungs become stiff and cannot move oxygen into the blood.  The late Ralph Nelson, MD, a brilliant physician who devoted himself to medical illustration, dubbed people with restrictive lung disease “Pink Puffers” because they manage to make up for the stiffness of their lungs by breathing faster: therefore they don’t turn blue the way people with other lung diseases do.  My mother is a classic Pink Puffer.

But restrictive lung disease can result from certain cancers that infiltrate the walls of the lung tissue, making the lungs stiff, necessitating an increase in the respiratory rate, and hugely increasing the work of breathing.

I’m feeling sorry for my mom, even though I don’t love her.  I hate to see anyone, any creature, suffer.  I suspect that the process of definitive diagnosis will be a long and unpleasant one.  Believe me, if I were still in medical practice, she’d have her diagnostic workup done, not yesterday, but a year ago.  And then….what would happen to them?  I can’t even take care of my dad alone, due to my own health issues, let alone the two of them.

Tonight I feel as if I’m looking right down the throat of the monster that takes lucky people with two living parents and makes them suddenly into orphans.