The Cure for PTSD Terror: you’re soaking in it

This post may trigger PTSD sufferers.

In our search for mental health care, we once sat in a Kern County, California, mental health clinic listening to a psychologist exclaim that our patient could not have PTSD because she had never served in the army.

In fact she had been conscripted at birth as all the rest of the family had, and our sergeant major was a bat-shit crazy man, known initially as daddy and later as grandfather. His sadist attacks were so traumatizing that we dared not reveal them even had we been able to remember. So it was that the patient had been repeatedly taken back to that house of torture by her mother, the author of this blog.

(To be fair, mother could not recall that her own life had almost ended when the b-s crazy man raped her as a child. And she has spent the last 30 years since b-s crazy man died and she did remember, in profound guilt and grief. But enough of personal angst.)

Suffice to say Dad could have given the North Koreans or even the CIA lessons in torture or a 2.0 course in mind control. He himself had rather an unpleasant death, which I describe at the end of my e-memoir, Never Tell, recovered memories of a daughter of the Temple Mater. joycehowe.com

That’s the back story as to why the patient developed suicidal impulses and then intractable insomnia. For most of her life, she was able to repress the trauma, going so far as to contend that the rest of us experienced it, but she didn’t. This was lucky, because by then we had put in years of dealing with it, worn out therapists and come to realize that terrifying as it is, the past is dead and gone.

As, by the way, were quite a few people outside the family, who encountered our very own psychopath. And, no, a million dollar police investigation, involving three police forces couldn’t prove that.

How to deal with such insomnia? Even the strongest drugs couldn’t put her to sleep for long. In one 5 day hospital stay, five other drugs were tried. The fifth one precipitated a heart attack. So we cast about for other methods.

Finally last April, I concluded she couldn’t sleep because she was afraid to dream.

At one point, she fled to Toronto and her loving mother’s arms. I would sit at her bedside until she fell asleep, sometimes for 90 minutes. It is a moving experience to sit in the dark beside someone you love as she does her best to sleep. Going to sleep for her isn’t easy, but it is easier than staying asleep. I wasn’t up to being there at 4 a.m. when she usually comes wide awake. Or 3 am or 2 am. Sometimes she doesn’t sleep at all, just lies in a semi-conscious state, which surprisingly can generate bad dreams.

While I was studying the NICABM (National Institute for the Clinical Application of Behavioral Medicine) Treating Trauma Master Series , I came across the idea that therapists don’t do their clients any favours by trying to make them feel safe. That is a technique that Grandad and hosts of his fellow abusers use. Trying to make the trauma survivor relax is an immediate trigger – they want to run a mile.

Our patient came at the idea from a totally different angle. She watched a terrifying movie, went to bed late and slept like a baby.

We reached the conclusion that, instead of avoiding fear, she (we in fact) had to soak in it – like that Palmolive dish detergent commercial years ago where the woman is in the nail salon -“You’re soaking in it”. https://www.youtube.com/watch?v=_bEkq7JCbik

We are in the research phase. Our patient has spent the last several months reading about psychopathic serial killers and watching shows like The Mindhunters. The Mindhunters interview serial murders in prison in order to understand them. Patient reports that the single scariest scene so far was one in which the woman on the mindhunter team was at home in her apartment at night wearing only a long  man’s shirts and pouring herself a glass of wine at the kitchen counter. She was at the left of the shot. The right side showed the rest of the kitchen and hall, an empty floor. An absolutely terrifying space. Into which something could suddenly come. I myself found the next scene where she goes down to the building’s laundry – still dressed only in the shirt – and while the washer starts, hears a cat meowing outside the open basement window and decides to feed it her leftover tuna. I will not divulge what eventually comes through that window.

Who says recovering from PTSD can’t be fun?

I’ve always hated Hallowe’en and horror shows, but now I begin to see their value. We can’t evade our terror. It may be buried, but it’s there, so we might as well face it, embrace it as far as possible. We don’t need to defy it. We can acknowledge it and even say this is what made me who I am. We can say, ‘I have been to the edge of death more than once, but I can still permit myself to sleep’. At least six hours most nights.

And of course, we can refuse to put ourselves in real life situations with people that scare us.

See also https://115journals.com/2013/10/18/the-cure-for-pain/

 

 

 

 

 

 

 

Dark: a personal response to the Netflix series

screenshot from Dark

It has taken great self-control not to watch both seasons and all 18 episodes of Dark for a third time. First, I watched the dubbed version. (Avoid that.) Then I watched the original German version with English subtitles. Altogether a much better experience. It took me over two weeks and given my advancing years, I held out against wasting time by perennially repeating this experience.

“Time is always with us. Time sees everything”

(Yes, you can. Go to options and opt for the original German as the language and English subtitles. Don’t have options, you’ll have something like it, the same place where you can opt for closed captions. Never did that? You have a whole new world of experience to discover. You will even be able to understand The Wire afterwards.)

Initially, I couldn’t understand Dark’s complexity. (Face it, kid, ultimately you couldn’t understand it either.) It starts with the disappearance of a child in 2019. Well, no, it starts with the suicide of a 43-year-old man in 2019.

Four different families find themselves in tumult: the Kahnwalds, the Nielsons, the Dopplers and the Tiedemans. But wait, another child disappeared 33 years before in 1986. From the same family – the Nielsons. Policeman Egon was so ineffectual at solving the mystery that Ulrich Nielson, brother of the disappeared boy, has become a policeman in order to do better. Now his son is missing.

The town of Windem is set in the midst of a great evergreen forest, but rising from its centre, far from the red tile roofs of the tidy houses, is one of Germany’s first nuclear generators. Snugged up to the guarded perimeter of the plant is a cave, which all the children are warned against, so, of course, it is a child magnet.

Windem, we are told repeatedly is a town of secrets. Initially, these secrets seem to be adulterous, but then again they could be ecological or incestuous.

Why is there a door in the cave that is welded shut? What does Sic mundi creatus est mean? And, whoops, why has another and another person vanished? Who is the man dressed like a priest, lurking near the cave and chatting with children? Why does the body of a boy dressed in 1980’s clothes and dead only 16 hours suddenly appear? What is this book that keeps surfacing – Eine Reise durch die Zeit – A Journey Through Time? Could there be such a thing as time travel? Could the question be not ‘Where is Mikkel?’ but ‘When is Mikel’?

Is Charlotte Doppler, Winden’s police chief, the key to these mysteries?

Then we find ourselves back in 1986, same town, same school, same nuclear plant, same people, just younger.

So you have home work. Get well into this series because I need to keep writing about it and there will be spoilers.

 

 

Grieving for Blake: a ghostly affair

Persistent readers know that I have been documenting the demise of my ex-husband Blake here at 115journals. I’ve told of his remarkable 8-year survival with stage 4 prostate cancer, and lately his decline as he began to lose his grip on his perch. He passed away last Monday.

We have been divorced for forty years. We were married for only nineteen. We had two children, who are themselves middle-aged now. To protect their interests, I agreed to act as his executor. I knew it was a bad idea, but I wasn’t aware that I would be chief mourner and ghost-whisperer as well.

When it comes to Kubler-Ross’s  seven stages of grief, I’m a rapid cycler.

Saturday, I set up a little altar in the loving spirit of letting him go, or to be precise, getting him to go. He had turned up in Georgia’s bedroom at 5:20 a.m. in his hospital gown, trailing his blue hospital blanket, confused but vividly Blake. A few days later, Georgia’s daughter jumped off the floor and screamed as something brushed past her in a doorway. Admonitions to go to the light, to go find Leyla, his second wife, fell on deaf protoplasm, as did a final plea to go find his pet Sheba Inu.

In my place, his presence was more diffuse and business-like. He has left me to file several years of income tax, as well as deal with Alice, his resident gold-digger. On Saturday, that seemed charmingly chivalrous, so I set up an auxiliary shrine on the dining room table. As a Taoist, I keep a family shrine with pictures of my people, past and present, Kwan Yin, the Mother, Buddha and candles. I put a picture of 23-year-old Blake in his graduation gown, his obit, a book of Rumi poetry, a dozen tea-coloured roses, incense, Kwan Yin, Buddha and lit bees wax candles. It was the Saturday after his passing, the day we would have had his funeral if he hadn’t opted out of such ritual. I read him Tennyson:

Sunset and evening star
and one clear call for me
May there be no moaning of the bar
When I put out to sea.

Then I got on with my own taxes.

In the evening, I sat down to finish watching The Girl on the Train on Netflix. I had read the book some time ago, and, although I had forgotten it mostly, I knew I hated all three neurotic women and especially the drunken protagonist, who just wouldn’t let up on her ex’s new wife and may have killed her neighbour. About an hour later, my mood had swung from loving a farewell to dear Blake, to get back here: I’ll kill you myself. For my lovely Blake was every bit as good at gas-lighting as Tom, the husband in the story. We – ex-wife, daughter and step-daughter – had compared notes at dinner one February night when the family had travelled from near and far to say goodbye to papa. And he wasn’t beyond blackening each of our names to the others. Then, of course, there was the question of Alice, his latest triumph, 45-years younger, who wouldn’t let us in to see him without a hissy fit, and who had been helping him work his way through the home equity line of credit at a good fast clip.

I repurposed the altar in the name of love and told Blake to get lost.

So here I am, middle of the night, suddenly awake and sobbing with grief. I knew him longer than anyone still extant. I may have loved him best. I certainly hated him best.

He’s gone. I can’t call him up to lament about one ‘child’ or the other. I can’t depend on his caring as much as me. And no, I can’t tell Blake – whatever – anymore.

He believed death was the absolute end. There was nothing after.

In that case, settle down, Boy.

 

Blake on his Sad Height #2

And you, my father, there on your sad height
Curse, bless me now with your fierce tears, I pray
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Dylan Thomas

Here I continue the story of my ex-husband Blake’s fall off his perch. See 115journals.com for previous episodes.

Alice just called. Should Blake have blood thinner shots?

I am known as the Alice whisperer now. Like Blake, I am old enough to be her grand parent, so what the hey. The younger members of the family are more familiar with being the target of Alice’s angry shouts to get out of her house and leave Blake alone. That would actually be Blake’s house of course. But that chapter’s over and done with.

After Alice broke Blake out of Toronto Western Hospital, things went downhill on the home nursing front. Mercifully, I was left out of the loop at 1 a.m. when, once again medics trundled Blake down the narrow stairs from his third floor bedroom, and took him to Mount Sinai Hospital.

Alice just called again now. The doctor says Blake’s hemoglobin is so low, blood thinner may cause a bleed. So no.

Yet another day of sitting beside his bed and talking to the palliative care resident, the palliative care doctor, the nurse, the pharmacist, the social worker, the resident internist, not to mention the diaper changing crew and the meal shleppers. Hard enough to answer questions without Alice asking complicated meds questions of the social worker or hospice questions of the pharmacist. Always Blake was consulted on decisions. Did he want to continue treatment with Zolodex. No, he didn’t. Two interviews later, by a different expert, well, yes, why not. He’d been taking it all along after all.

Daniel and I are silently shrieking, “Stop. Stop. It’s over.” Alice is buying even the smallest unit of survival time.

The Zytiga costs $4,600 a month, but all Blake has to pay is $600 for one last bottle before the drug insurance runs out. I have no luck contradicting that decision. Alice has POA. (Yes, I had to look it up – power of attorney.) She gets to make decisions.

Alice takes it hard when the resident explains that a hospice makes the patient comfortable, but does not treat the underlying disease. By the end of the day, news arrives that Blake will be moved to the hospice unit of Sally Ann’s Toronto Grace in the morning. He is there now and that is where Alice has been calling from.

It took me the usual 2 hours to get back out of the city. I was so shattered, I took a short cut which turned into a long, long cut. At home, I showered, brushed teeth, gargled and made plans to burn my clothes. Then I fell into the unconsciousness of sleep at 6 p.m. Spending a day trying to keep Alice from messing things up and countering her rude cracks at the staff has that effect.

But Blake!

He is completely changed. He doesn’t care who helps him sort out Mr. Peepee and the handheld urinal. I say, “Good boy” and he’s satisfied. He snoozes and wakes up to ask questions. “David’s Savings Time?” “Air bubble?” Some I can’t decipher. “I need to borrow a lot of money,” he announces. “Why?” “To solve this problem.” We skip the obvious. The problem will be solved soon enough. “You just got your pension cheques,” I say. “I’ve paid your property tax,” says Alice, “and you still have $80,000 free in your line of credit.” But he has actually read the family’s mind. We thought we would need to pay for private hospice care. “I can hear phones ringing and somebody saying, ‘I’ll transfer your call’.” The nursing station is far enough away that I certainly can’t. I feel sorry for the young man in the next bed who is recovering from orthopedic surgery. How hard this must be to overhear.

Blake is listening when the best news of the day comes. His prognosis is down from 6 months to 3, and that is why he got a hospice bed.

I rub his feet. I touch his forehead. I do not allow myself to grieve. I can do that once I get out onto the Queen E. where the freeway traffic thins and all the way up Erin Mills.

Once I got rested, I felt how sacred it was. He looks like one of those elongated saints beside a Gothic Cathedral door. He has lost all his angry edge that made the last six weeks so hard. There is nothing left of the womanizing misogynist that wrecked lives. The essential Blake is there, just shining through.

 

Comedy is Easy. Dying is Hard.

We were bird people as a family. Too many allergies for furry creatures. There were usually two budgies in a large cage, with names like Pip and Midjbill. And God help the unlucky child who pulled off the cover to find that one of these beauties had fallen off its perch.

As constant readers know, my ex-husband Blake is about to fall off his perch. https://115journals.com/2019/01/26/go-gentle-or-rage-two-ways-of-saying-g

https://115journals.com/2019/02/08/place-your-phone-in-your-shoe-and-move-forward/

https://115journals.com/2019/02/23/blake-there-on-his-sad-height/

He has had an ample allotment of borrowed time. He was diagnosed with stage 4 cancer nearly nine years ago, at the same time as his much younger second wife, and has outlived her by eight. Now that time is running out.

I know about living on borrowed time. I am mostly grateful to have had so much of it myself. Mostly, I am grateful, but possibly, like him, I will not consider it ample when the time comes.

Meanwhile, I have a bit part in Blake’s last great adventure. The experience veers between tragedy and farce. There are heart-rending moments, followed by down-the-rabbit-hole moments, involving, for example, shoe phones.

Stories of families gathering before or in the wake of a patriarch’s death have a common theme. Revelation. Family #1 meets family #2 and all is revealed.

We did that on such a brutal winter night that we were the only people in Milestone’s dining room. All three children were beautiful and bright, mine considerably older than the step-daughter and daughter-in-law. Once they got going, trading stories, I had to put my hand up to get a word in. Blake had changed settings, but not much else. “He did that to you too?” was a common refrain.

Since we were all now having to beg permission from his latest live-in lady to visit him we had started out a little testy. Since we had also spent a week trying to clean up the squalor of their home, we were seriously aggrieved. We didn’t want him to spend his last days like that. On the other hand, we didn’t like being screamed at to leave now, nor to contend with Blake’s desperate cries that we didn’t understand.

At least, I concluded from the family revelations that Blake had risked his step-daughter’s life less often than ours as he sailed Sirocco, the red hulled Northern 39. And anyway, we were willing participants in those cross-lake races through 20-ft waves. Or willing to risk our lives for Blake’s approval at any rate.

For a week, a kind of peace descended as Blake’s grandsons sat with him in his third floor sort of clean room.

Then they were gone. Our son Daniel and I found ourselves beside Blake’s hospital bed with his companion Alice, trying to understand proposed treatment and to inject logic into choices. Pretty much to no avail. Blake intended to go back up to his third floor. It would not be possible to equip it with a hospital bed because of the same narrow stairs that had prevented the paramedics from stretchering him down. He had had to walk down with 10/10 pain. But once his hydro-morphone dose was right, he would go back there and if he chose to, he would drive his car. This last decision led to hard feelings. Daniel and I did not agree that persons on opiates with a weakened back bone should drive.

As a result, Blake and Alice slipped out of the hospital last Saturday and ubered home. (Sans driver’s license, which the doctor had had withdrawn.) She watched him climb back up to his eerie. She reckoned he could have a few more weeks there in the company of his cats, warming his creamed soup up in his microwave and snacking on smoothies from his little fridge.

Until. Until the pain got up to 10 again on Sunday and what should she do. And he wouldn’t get off his wet bed so she could change the sheets. And he was cursing the doctors for not getting the pain meds right.

And I was saying, “Call 911!”

I was trying to shop for groceries. It was the second time in 10 days that I had tried to buy groceries while Alice shouted in my ear buds that she couldn’t handle things.

For the next 2 hours, I fielded phone calls -Alice, Daniel, Julia, our California daughter, Georgia, my sister – all of them several times, each call interrupting another. Texts dinging in as we talked. Daniel was about to go over to Blake’s home and call 911 himself when the palliative care nurse arrived at the house. The last I heard, Blake was allowed 2 more short term hydro-morphone when necessary. He hadn’t taken them. He was sitting up, his pain was 0, and the bed was only a little damp under the clean sheets.

The comic who says, “Dying is easy. Comedy is hard.” hasn’t died recently.

 

 

 

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Go Gentle or Rage: two ways of saying good night

And you, my father, there on that sad height
Curse, bless me now with your fierce tears, I pray
Do not go gentle into that good night
Rage, rage against the dying of the light.

Dylan Thomas

Many people visit this blog –115journals.com – for one reason to get some help understanding Eleanor Catton’s enigmatic novel, The Luminairies. Ms. Catton has not expressed an opinion on my interpretation, and if she decided to do so now, I would probably not get it, just as I can no longer answer questions about the book itself. https://115journals.com/2018/09/08/what-i-once-knew-anglo-saxon-algebra-and-the-luminaries/

Others of the 300 followers catch more recent posts in their Reader or by email. Some have become familiar with my family and its ups and downs. The cast of characters include my sister Georgia here in the western suburb of Toronto and her tribe of children, my Brussels’ brother, my California daughter – she of the differential diagnosis, https://115journals.com/2018/11/08/all-is-well-differential-diagnosis/ and, of course, Blake, my ex-husband. https://115journals.com/2018/09/07/good-eggs-john-burt-and-me/

The bottom line is that Blake’s losing his grip on his perch.

Blake still perching

Returning from my recent sojourn in the Kern County Mountains of Southern California, I found him mostly confined to his third floor bedroom in downtown Toronto. It had come on him suddenly, he confided. He hadn’t had time to see to things, do that Swedish death-cleaning thing, for example.

It’s a religion to me, constantly weeding my possessions, my unworn clothes, books I no longer read, geegaws that never see the light of day, papers. I spent a morning shredding as I tried to get oriented back into my life here in Mississauga.

Blake mentioned this because he is going to leave me, his executor, to deal with a house crammed full of stuff.

I refrained from pointing out that he had had stage 4 cancer since 2010. On the other hand, he had been sailing and cruising and zip-lining through jungles and zooming down water slides until this last summer. And he has always expressed the desire to live forever. He has that optimistic turn of mind.

It appalls me. But then I have grown old in spite of that. https://115journals.com/2018/12/27/when-i-get-older-the-hundred-year-old-man-who-climbed-out/

Turns out, he’s been so busy and then so suddenly sick that he now needs a small army of relatives to clear enough space and clean enough space for him to enjoy what’s left of his time on his perch. The troops are rallying. Just don’t suggest cleaning crews. It’s more piecemeal and personal. “What is this pile?” is the current question. Could be important. Could be wash.

Then there’s the pup, a sheba inu. “Say goodbye to her,” Blake advised, implying she might be gone next time.. I thought to myself, “I said hello and  got no sign of life.” I bent down to bid the pup farewell.

Today we got the vacuum working and took up the worst of the animal hair and the autumn leaves and pet food around the bedroom. (Yes, there is a balcony.) We changed the sheets. Do many people store their sheets in tightly wound balls in linen cupboards?

Our son Daniel has pledged to install a grab rail over the tub/shower and hand rails on the steep, narrow stairs.

Our daughter and our younger grandson plan to fly out of LAX as soon as his expedited passport comes through.

Blake’s step-daughter beat us all by getting there last week and pledges to carry her weight.

Blake is very grateful to me and happy when my brother Facetimes from Belgium, but he is grumpy with his companion. He was only moderately pleased when the U.S shutdown ended today. He would be happy if only he could outlive Trump’s reign, which he sees as a threat to the world order established by the Second War, his war, the war he was refugee-ed out of at the age of 5, without parents.

In our 25 years together we were intellectual snobs. Orphaned and outsiders, we said, “Living well was the best revenge.” Then after Europe and the energy crisis, “Eating well is the best revenge.” In the 40 years since we parted, our paths diverged apparently.

I said earlier in the week, you’re going to get to go home. You haven’t been home for a long time. No, he didn’t believe that. Dead was dead. “And you a physicist!” I said. “A physicist who believes that all this loving energy can be destroyed?” “Well,” he allowed, “it is an unbelievable miracle that the human race evolved out of nothing.” “I always thought that about our children,” I said. “They came out of nothing but love.”

They are still coming, fourth generation beings who will carry us into 2100.

What the Candle Said: caring and melting

I am reposting this a year later because I finally get it – a great liberating acceptance of what seemed like suffering and loss.

A candle as it diminishes
explains, Gathering more and more is not the way.
Burn, become light and heat and help. Melt.

Rumi (trans. Coleman Barks ‘Light over this Plain”

The candle gives good advice. Surely, such advice needs to be treated seriously, not ironically. Easy enough to post. Might even help somebody on her way. And there’s even a free candle picture to pretty things up.

But then – gaaaaaa – you find yourself screaming, “I’m melting! I’m melting!” like the Wicked Witch of the West doused with a bucket of water.

Age was melting me before I undertook this project. For the last four years, I have paid a younger woman to clean my apartment every two weeks, first Teresa and then Louisa. I could have been Teresa’s mother and Louisa’s grandmother, but these women brought not only their Portuguese cleaning skills – lots of vinegar and elbow grease – but also their warmth. They looked out for me.

Then I got the call. Invalid 1 was immobilized by pain and might or might not be mortally ill. What’s more Invalid 1 had assumed the care of Invalid 2 during the summer. Although she is in good health, Invalid 2 is even older than me and about to become a nonagenarian.

We’re short on available help as most families are these days. In my day, as we oldsters say, there were spare spinsters about the place, who would come and sleep in the single bed or on the couch and take on the nursing and housework. Not an unattached auntie to be found in our case, not even a biddable if somewhat challenged cousin. Moreover, we are scattered across the continent and those of us in healthcare are gainfully employed.

So I sallied forth. I flew out the next day (115journals.com/2018/10/24/mother-on-broomstick-celebrates-legal-weed/). Like many other mothers, I had already had practice answering such calls. I picture these mothers driving alone in cars, on planes, on charabancs, on buses and trains, sharing space with life stock when necessary, beating a path toward the need.

Invalid 1, my daughter, had been making the shorter trip to Invalid 2, her mother-in-law, daily, for several months and she had developed a real knack for it. She sort of sank into the whole experience. Patience wasn’t even required anymore. It took as long as it took, getting the house in order, checking the fridge for spoilage, making lunch, sitting and listening to the older woman, watching Dr, Phil at 3 o’clock.

Too bad this zen-like helper was now bedridden and had become the lump on the couch, as I affectionately called her.

For the first while, I saw my main task as taking care of her. Her mother-in-law, meanwhile drew on her own strength to manage better than we thought possible.

As time passed, my daughter’s diagnosis became clearer. (115journals.com/2018/11/08/all-is-well-differential-diagnosis/) and surgery got her on her feet. In little more than a week, she was back looking after Other Mom, while I watched in awe. And yes, she got what the candle was saying.

Me? I am melting. My share of the duties doesn’t seem onerous. I don’t even have to cook. Hubby does that. I do the wash and try to keep the place moderately clean. I go to appointments with her – she has to have a second surgery. I used to do all these jobs, work a full day and even give the occasional nod to my children. It’s humbling to take measure of my diminished ability.

The thing is, as soon as I arrived, even though she thought she had a dire diagnosis, she began to laugh. She was better just because I came.

And that is what love is after all. You give what you can. If there’s nothing left, you’re all the better for it.

All is Well: differential diagnosis

115journals.com/2018/10/06/all-is-well-another-contradiction-to-despair/

In the middle of October, I posted “All is Well”, another contradiction to despair. Events overtook me and I posted “Interval”, promising to post “All is Well: part 2”.

I will begin by explaining the difference between renal cell carcinoma and fat poor angiomyolipomas, so far as I understand it. The latter, also referred to as AMLs – not to be confused with Acute Myeloid Leukemia (that’s someone else’s nightmare) – are made up of blood, muscle and fat. Ours was spotted incidentally during an unrelated CT scan. It was a 4.1 cm. mass in the right kidney.

Did you know renal carcinomas can be diagnosed visually? So three weeks ago we got the bad news – kidney cancer. But wait a minute, the real target had been a 3.8 mass in the hip on the same side. Could be metastatic kidney cancer.

Honestly did not know I was capable of howling loud enough to alarm my neighbors.

But, stat, there was an MRI guided biopsy of the hip lump. Hip tumor not cancer. Rather a schwannoma, a tumor of the nerve sheath, in this case on the sciatic nerve and, in this case, benign.

Can there be kidney schwannomas ,we asked the Google gods. Possibly.

Let’s do another scan, stat of course, to see what is going on in adjacent organs – I imagine this one as High Def – and get a good look at the kidney interloper. Two days later, a voice mail message. Not cancer, but a fat-poor AML.

We had got used to the worst – every day terror, bleak future, all that good stuff. Hearing the no-cancer news, I had to put my head between my knees. One of us fell to cursing. The patient cried.

For three weeks, we had followed doctor’s instructions: prepare for the worst, maybe 17% survival in 5 years, gone in her early 60s. Then, when it was just kidney cancer, not metastatic we had a 96% chance. Now, we were back to 100%, or as close as you can be, given traffic on California freeways. We should have been happy, but we went around muttering, “It’s Tuesday, it must be cancer.” “It’s Thursday, it certainly isn’t.” “It’s Friday…”

We didn’t trust any doctor and certainly not a radiologist. The current one still wanted to call it cancer, despite a visible few fat cells. What we read, and we read everything, told us carcinomas had no fat. A radiologist in 2012 had reported that a tumor of 3.8 cm appeared on the left kidney. We ordered the CD record of it. Definitely, on the right. The radiologist had reverse-read the kidneys. If he had not, we would never have fallen for this funny little trick Nature sprang on us.

Lucky us. Lots of patients have discovered only after they’ve lost a kidney that they didn’t have cancer.

This morning, the urologist assured us that the offending growth will be biopsied when it is removed. When will that be? Well, first the main player, pain-wise, has to go. Simple to cut a schwannoma off a sciatic nerve, just don’t cut too close or -bingo- a different crisis here in Kern County. Recovery will take 2 days. When the patient feels better, she can call and get the kidney surgery date.

The issue of getting something to kill the pain is another whole drama. Governments make doctors’ lives hell when they prescribe opiate-type drugs. As far as I can see their draconian rules have not made a dint in the opioid crisis as yet. The neurosurgeon breezily suggested a pain clinic. Wait times for pain clinic appointments are at least 30 days. We live near an opioid addicted town, we might get lucky on a street corner. But, no, the urologist came through for the next 5 days. Not the same effective painkillers, not nearly as effective and rife with side effects. Weeping over the phone to the pain clinic got us an appointment in 5 days. And this is a temporary need, until surgery, for someone who can’t get up off the couch most days.

I am Canadian. We have the same struggles with diagnosis and waiting for surgery. I once waited for 7 weeks to have an intestinal carcinoid removed. I could eat only fluids or runny pureed veg. Great slimming diet. I was prescribed liquid morphine. But I absolutely never had to think about cost. Not true in California, even with Medicare.

This is a wonderful country, don’t get me wrong. Driving up the I-5 from the neurosurgeon’s, I remembered that, if California were a country, it would be the 5th largest economy in the world. But *#@! it, why doesn’t it take care of its people. My great nephew in Belgium had a 15 hour surgery on his brain, lived to tell the tale and got no bill.

Next up: insomnia of 10 months duration.

“All will be well and all will be well and all manner of things will be well”

 

Let It Be: contradiction to despair #9

Aslan, the Lion, turned up at crucial points in CS Lewis’s The Lion, the Witch and the Wardrobe books. Once He chased after Lucy, one of the child heroes, who was riding on a horse across a desert and nipped her bottom because she wasn’t getting the job done.

Today Aslan has been gnawing on my inards. Well, he’s sent other messages, which I’ve ignored. This one is not to be ignored. I have to change my ways.

One of the messages appeared on a tiny sand beach on Lake of Bays in Muskoka. I found it when I went to look for the puppy. He had been quiet too long. Any mother knows that is a danger sign. He is a sheep dog mostly beige with brown and tan and black markings and white legs. I found him in front of a Muskoka chair, dug well into the sand, sound asleep, almost invisible. He had dug the hole while he waited for his human, a 13-year-old girl, to come back on her kayak. She was taking too long and he had fallen asleep on his watch.

Back in the cottage, I found a 6-year-old girl in a red sundress asleep on the couch, her thumb in her mouth. Too much sun.

Upstairs, I gazed out my bedroom window at the maple woods, rising to the ridge above the lake. Last evening, it had been lashed by heavy rain. I had cranked the window open to hear the rush and fall of the water. Surely, there is no greater pleasure than to be safe and dry with a good book during a summer storm.

There were 11 of us at the cottage, my sister, Georgia’s family, four generations. The oldest was 82, the youngest 4, teenagers, mother, grand parents and Georgia, great grandmother. I’m aunty. There are many delights to be had while playing aunty. Being bed-crashed by a 4-year-old who calls you “Poopyhead” with great glee, being overwhelmed by a full description of family ancestry by a solitary breakfast companion, sitting by a campfire with a man who loves to build one and took it upon himself to know when the fire ban was lifted (cf heavy rain).

It was a family, so there were also sulks, parental irritation, crying jags, defiance, sudden loud explosions of joy, differences of opinions and mild panic over wandering dogs. There was to Georgia’s delight much book reading and some discussion.

There were DVDs but no television. One cell phone and computer were called into play for work, but not for long. I made one phone call. Well, two if you count the one my phone made on its own as it charged up. It was 4 a.m. in Brussels, but there was my brother sitting up in bed.

Aslan is on my case because of the other call. If you going to call someone to help them out, and let yourself get drawn in, you are not doing the job.

Worry was the problem. Apprehension about a negative outcome. How effective is worry? Can it change outcomes?

I have conducted this experiment countless times in my long life, and I can reliably report that worrying has never altered any outcome in the smallest way. It has had considerable effect on the present, however, and not a good one.

The alternative is awful.

Letting go. “Let go and let God”, so speaketh the fridge magnet. Which is fine if you have a fridge magnet’s faith. “Let it be” as John Lennon’s mother Mary told him. (No points for knowing how that turned out.) “Whatever will be, will be,” as the old song says. “No doubt the universe is unfolding as it should.”

Just goes to show that I’m not in charge.

Isn’t that the point?

 

Joy: contradicting despair #1

Infant Joy

I have no name
I am but two days old.—
What shall I call thee?
I happy am
Joy is my name,—
Sweet joy befall thee!
Pretty joy!
Sweet joy but two days old,
Sweet joy I call thee;
Thou dost smile.
I sing the while
Sweet joy befall thee.
I have been reliably told that I spent the first months of my life crying inconsolably, and yet, I was called Joy. I was Joy for many years, unsuitable name though it was, until the people who called me that were gone, and I became Joyce. Even my children and grandchildren call me Joyce. I don’t complain. It is my baptized name after all, but I liked being called Joy. It reminded me that joy existed.
Just today, I got short video texted to my phone, which showed my 14-month-old great granddaughter rising to her feet, free-style with no support, and setting off to walk toward her joyful mother’s out-stretched arms, moving with sure speed toward laughter.
Joy is not contentment, nor even happiness. Dwelling in joy sounds challenging. Ancient Chinese medicine warned that excessive joy damages the heart. We are told that winning the lottery is a stressful experience, for example, and can lead to negative outcomes.
I have known only one person who came anywhere near dwelling in joy. That was my Aunt Mae. I didn’t see her often because I lived hundreds of miles away from her, but when I went back to visit my grandmother, I always walked to Mae’s tiny house under the mountain. The last time, I did so, I was with someone, my sister perhaps. As we neared the little porch, we could hear her singing. She had always had a dreadful voice and she was belting out, Jesus Loves Me at the top of it. It took a while for our knock to penetrate her ecstatic hymn. Then she threw open the door and cried out with such welcoming love that you would have thought Jesus himself had come to see her.
Mae had seen many dreadful things in her life and suffered poverty and abuse. I had watched her grieve enough to finish off most people, but now in her old age with legs like stove pipes and the agony of a declining body, she was joyful.
When I think of her, I can’t decide whether she was a saint or senile, an old fool, she would have called herself.
I propose to continue my contradiction by looking at ecstasy, contentment and happiness in future posts in order to set them against the deep and abiding depression that I share with several others in my life.