The One Thing You Must Never Forget to Do: contradicting despair

The Talmud tells us, You are not obligated/ to complete the work/but neither are you free/to abandon it.

The poet Rumi tells us, There is one thing in the world you must never forget to do.

Aunt Mae told me, Joycey don’t take it so to heart. She said there were millions of people of goodwill and they were all working hard. Then she cackled her uproarious laughter, she who could see the future and pronounce, “It ain’t much.” no matter the disaster. But then she said the same about death itself.

So now I near the end of my time here in the California mountains with Patient # 1 and Patient #2. https://115journals.com/2018/12/04/what-the-candle-said-caring-and-melting/ Both declare they are well and self-sufficient. One is certainly on her way there, but the other is probably on a down-bound train. No matter, I have my marching orders.

As I prepare to take up my own life again, I am doing what Mae said not to. Taking it all to heart. Taking myself too seriously. Midnight, i.e. 3 a.m., January 1, 2019, found me sleepless and full of grief and self-loathing. What did I have to show for my effort and expense? The feedback had not been encouraging. And I was as tired as an 82-year-old awake on top of a dark mountain in the bleak mid winter.

I know that the wise drag their wisdom up out of the darkness. I have watched my dear Patient #1 do this literally, coming back from unconsciousness many times, one a particularly long and perilous journey. I have done so myself. And, my elderly friend, Patient #2, is facing it daily, as age limits her senses and her scope of activity.

I have written about my grandmother in her old age wondering why she was still here. https://115journals.com/2018/12/27/when-i-get-older-the-hundred-year-old-man-who-climbed-out/ For two months, I have not had cause to question that. I was here to help. I always knew I had to stay alive in case of contingency. I’m not sure how many more contingencies I have left in me, but then I could have sworn I didn’t have the wherewithal for this one either.

My life on the 14th floor in a Toronto suburb feels distant and unreal, the desk in front the floor to ceiling window, a writer’s desk, the walls vivid with my sister’s paintings, the bedroom, curtained and warm where books wait to be read, the little kitchen where alchemy occurs. The silence.

All those shortened lines of energy, the physical bonds that are so present here will have to stretch across a continent. Technology makes it easier.

At first, I will have to catch up on all those appointments I cancelled in October and go gathering and hunting to fill the fridge. I’ll have to relearn how to sleep in a light-filled city. For a while, I will have to be Patient #3. She needs my help.

                     

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When I Get Older-: the hundred year old man who climbed out…

It was 1967 and like all good Canadians, my husband and I had set out to show our 100- year-old country to our young children. We were on our way back from the east coast when we stopped at my grandparents’ farm is Quebec. The next afternoon, we got a call on the party line: could my 33-yr-old husband go up to my great aunt’s farm to help get the last load of hay in before the threatening storm broke. He set off, eager to give himself a workout after days of driving.

While we were eating supper a few hours later, he burst through the door from the woodshed. “You’d never believe it,” he cried. “There was an 88-yr-old woman driving the tractor. A 78-yr-old woman up on the hay wagon and a 71-yr-old man pitching the hay up.”

We turned to stare in incomprehension. Yes, and …

That was my grandmother’s sister, Eva, driving, not an actual tractor, but an very old stripped down Ford pickup, my other grandmother’s sister, Betsy, building the load and her husband, Ralph, pitching up. They hayed every year. Evidently, an outsider regarded such work as beyond the elderly.

I never worried about having to work hard when I got old. I never expected to get old. I almost exited when I was two weeks old, and again when I was starting school at six. That was only the beginning of my almost ends. Then, suddenly, I woke up one day to discover that I was almost as old as Aunt Eva, the tractor driver. The young husband, no longer mine, was even closer to Eva’s age. What’s more I found myself in the unlikely role of caregiver to a 90-yr-old friend. When she handed me a beat-up copy of Jonas Jonasson’s novel, The Hundred Year Old Man Who Climbed out the Window and Disappeared, she said, “I couldn’t get into it.”

The hundred-year-old man is Allan Karlson, a Swede – the novel is translated – who was born in 1905.

My grandmother, Eva’s sister, was born in 1900, and much to her chagrin, she lived to be 96. For at least 20 years, she went about wondering out loud why she was still here. I found this alarming, but I couldn’t convey to her how she was the center of the world for me, and, I suspected for all the other grandchildren she was so fond of enumerating. Not having her would be like not having the earth’s axis.

She lived within the same ten square miles her entire life. She never traveled farther away than 500 hundred miles. She had five children, three of them were born after me, her first grandchild, and two of these were twins. When she was already a grandmother, she had three babies. Diapers had to be washed then. She had no electricity, a tin tub with a wash board and only a clothes line for drying. Or – when she got desperate – she hung the damned things over the wood stove.

Allan Karlson, the Jonasson’s hero, who lived to be 100, had a much more exciting life. At the age of 10, he went to work in a nitroglycerine factory and taught himself to be an explosives expert. So much so, that he ended up helping out, in a strictly informal if significant way, at Las Alamos. He had already met General Franco in the Spanish Civil War before he met Harry Truman on the day President Roosevelt died. He went on to meet Churchill, de Gaulle, LBJ, Stalin, among other heads of state, and to intervene, however inadvertently, at crucial points in history. He learned many languages, spent long periods in various prison camps, walked across the Himalayas and blew things up just to be helpful. In short, he had the fabulous adventures that only a character in a satire can have. On the last page – spoiler alert – he finally overcomes the forced castration he suffered in his 20s.

The Hundred Year Old Man Who... is the work of a vivid and quirky imagination but it also contains insight: “The following spring he would be seventy-eight, and Allan realized that he had gotten old against all odds and without having thought about it.”

Exactly.

Meanwhile, my ninety-year-old friend has had her car keys confiscated. I’m pretty sure she had been driving for awhile with no idea of which dial was the speedometer. She is not happy to have her independence curtailed. Me neither. Everyday, I find myself driving her wherever her whim takes us. My dear friend with her sparkling blue eyes and her ready wit has to have me identify friends we meet in our forays, and all our conversations are conducted at the top of my lungs. Don’t talk about hearing aids, please. They are tiny, the batteries are impossible to change and they have feedback. She dreads the loss of her short term memory. Too late.

My once young husband has run through every treatment for his stage 4 cancer in the last ten years, and reports that he is unaccountably tired. He speculates that he may have to give up flying to Miami for Caribbean cruises or at least stop zip-lining in ports of call.

I have never been robust (see exit above). Unlike my friend and my ex-husband, I have spent my life not feeling up to par. I have numerous vertical and horizontal scars. I have to eat carefully, exercise carefully and rest half of every day. Yet here I am, completely unfit for the task, but still pitching hay.

What the Candle Said: caring and melting

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.

 

 

 

 

Thanks Giving in Buffalo Wallow

Of course, I’m not really in Buffalo Wallow, which must be somewhere in flatland. I’m up here on a pine mountain in the ancient land of the Chumash, who regarded it as the center of the world. Apparently, a Chumash trickster spirit, Coyote, or whatever he calls himself has been toying with us, so my gratitude this day is a little skewed.

I am grateful that Ikea’s designated delivery company finally delivered the bed. I bought it on Oct 23 by phone while I was still in Canada. I was told the first delivery date possible on this remote mountain in California was Nov. 8. This remote mountain is 40 minutes up the I-5 from the Ikea distribution center in El Tejon. While I slept on a mattress on the floor, my bed sped past me down the I-5 and came to rest in a warehouse south of Los Angeles, where it sat in a tight roll and disassembled pieces. Meanwhile my 82-year-pld body lay in a tight roll trying not to disassemble in agony. I missed the delivery date – they had been phoning my Canadian landline, but I am grateful that they delivered it on Veterans Day. I am also grateful that my daughter’s good-man-good assembled it with only minimum  damage to his body. So he says. I try to believe him.

It is 10 days later, my body is beginning to unwind.

Meanwhile, Mr Coyote’s trick involved a whole raft of medical specialists – general surgeons, radiologists, ear, nose and throat fellows, urologists, neurosurgeons, pain specialists, and a raft of CT scans, x-rays, MRIs, blood tests, cell cultures and biopsies. The diagnosis was kidney cancer, then metastatic kidney cancer, then benign tumor and early stage kidney cancer, then two benign tumors, one kidney, with a dissenting vote from the radiologist, who’s still got his money on the big C.

Update: a neurosurgeon has removed one tumor and it seems as though years of sciatic pain and months of insomnia have been cured. So thank you, Dr. Liker and all those friendly nurses at Henry Mayo.

Next stop, the urologist.

 

 

 

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”

 

Mother on Broomstick Coming into Los Angeles

Air Canada 791 leaves Toronto at 8 a.m. On a Tuesday, it is usually quiet. Today, the third cabin, with its excellent access to emergency exits, is all but empty. I have 32 H, J and K to myself. A little more sleep. I got up at 3:30 a.m.

A youngish blonde woman (to me that could be mid 40s) with a black, long-haired boa sits in front of me. A young couple with a new baby and a toddler, behind me. The baby begins to cry and the toddler joins shriekingly in.

Okay.

I can do this.

Been a mother. Been a grandmother. Been a great aunt. Am a great, great aunt. Am a great grandmother. I’m not one of those! You know who you are – complaining to the steward and changing seats.

Or maybe not.

Earbuds. What will drown out those excruciating high notes? Let’s see Bruce Springsteen? The Stones? Glass’s Kundun? Gould’s Goldberg Concerto? Various Artists: a Special Christmas?  WHAAAAAT? Ok. Nicola Benedetti: Tchaikovsky’s Violin Concerto.

I fall asleep, head full of symphonic music and wake, drooling and head lolling. To peace. The kids are asleep.

So, let’s get comfy. Put up all the arm rests, undo the seat belt, lie down, with purse as pillow and cover legs with a purloined blanket.

Two hours to go.

I wake as I woke once at Camping Krioneri on the Gulf of Corinth to the braying of a donkey. I lie contemplating this latest upgrade to the Boeing 787-9.

Listen, I can deal with this. I’ll just sink back into delicious unconsciousness where I don’t remember the pain and trouble waiting down there in Lotus Land – the on-going battle with the American health care system as it strives to diagnose a rare disease in someone I love and since it bankrupted them long ago, figure out how to provide treatment ASAP.

But no. The new arrival has the loudest laugh known to sound engineers. She’s in an excellent mood. So funny that my silent blonde neighbor laughs ever more loudly. The new arrival does physical humor  too, standing and twerking, then demonstrating the proper way to seat oneself for dressage. Or so I imagine. The seat back threatens to land on my head.

I sit up. I bring Nicola back up on the device -set to Airplane mode, of course.

What in heaven’s name is this laughing woman  taking? Something more than our recently legal Canadian marijuana surely.

But, at least for now, it’s only that dreadful boxed white wine they serve up here. She asks the male attendant at the beverage cart if the female attendant is his work wife. He pretends to blush. She invites him to her daughter’s wedding in Palm Springs. A hundred guests are coming.

In fact, I saw the bride schlepping a head high white garment bag, looking grim as brides do.

I remember that. Happy days. My girl’s wedding was in Vegas. The bride wasn’t grim until the city turned off the water to our rental house as she was getting ready. It was the last day of 2008, an auspicious time to get married.

Fortunately, I do not remember that someone from Texas brought in one of the first cases of H1N1 and we all spent January bedridden with flu.

Packed in that enormous bag of memory, 8 decades worth, I find a toddler sorting out a cupboard, every pan on the tiny kitchen floor, shrieking in joy at her newborn brother while she throws the newly folded pile of cloth diapers everywhere, a preteen glancing up as she realizes he has outgrown her, a mother in a skimpy nightgown nursing a baby on a floor futon in Venice Beach. Seventy flights like this, most of them on AC 791. Never crashed once. Be there soon, Baby.

Coming into Los Anglees/ Bringing in a couple of keys/Don’t touch my bag if you pease/Mr Customs Man

 

Good Eggs: John, Burt and Me

Blake, on his perch

It was a medium white Omega 3 egg with a best by date of August 26/18. When I cracked it open on Sept. 7th, it had an enlarged air pocket, characteristic of an older egg, but it smelled fine. I made pancakes with it.

Dear Divine Pancake Maker, please consider I may still be useful, if only for hard boiling and decoration.

I’m seriously concerned. John McCain and Burt Reynolds have been called home in the past few days and we were all born in the same year, 1936. It’s usually tough being 82, but right now it feels downright perilous. Hands up if you are 82 and feel that way.

My good friend/ex-husband, Blake, who has had stage 4 cancer for eight years, is generally well and aiming to match Roberta McCain, John McCain’s mother, and live to be 106. I have no such ambition. Yes, I want to go home sooner than that, just not yet.

Another friend, whom I used as model for Clara in my mystery Hour of the Hawk  https://www.joycehowe.com has reached the august age of 89. She lives alone in her own house and some chores are getting to be too much for her. (She is still an excellent sleuth of course.) Fortunately, she has a handy daughter-in-law who is happy to pitch in.

I myself have a handy cleaning woman, daughter-in-law being neither handy nor happy.

You see Divine Pancake Maker, I’m valuable for snark alone. (Oh, you don’t do snark!)

So here we are, we 82-year-olds who remember the Second World War, who were taught to read by Dick and Jane, who had to do long division by hand and memorize hundreds of lines of poetry, some of which we can still recite. (This was important in case we got trapped for days deep in a coal mine.) Not all of you have been as lucky as me. My first car ride was in a Model A Ford. But most of you can remember when 5 wire coat hangers could hold your entire wardrobe. I hesitate to say we are a dying breed.

Imagine, you young’uns, what a miracle it is for us to fly across the continent in half a day, to share thoughts instantly with others and, not only, talk to them but see them as we talk – my brother going out the dutch door of his house to sit on the bench in Bois Fort (Brussels) to smoke.

Brother et moi on a bench in Bois Fort

Were you born in 1936 or do you love someone who was, please comment, say something to keep us 1936ers hanging on to our perch.

Blake still perching

Lead into Gold: contradiction to despair #10

I made it around the little lake as dusk fell. My old legs wanted to give in, but then a piano started up a familiar intro on shuffle. What was this song? I knew it would play me home – Van Morrison Philosopher’s Stone. (See end note)

Years before, recovering from major surgery, I sat in the Starbucks across from Culver City Studio in L.A., listening to this song. The Harry Potter movie of that name had just been released from Sony, just down Washington Blvd. I still hadn’t emerged from pain and weakness of the operation and, it must be said, the terror of a second cancer diagnosis.

Was it really possible to be an alchemist and turn this lead of suffering into gold, I wondered.

Morrison sings that even his best friends they don’t know that he’s searching for the philosopher’s stone. He’s out on the highway and the byways in the cold and snow, alone and relentlessly searching.

In the years that followed, I caught glimpses of that magical mineral, but foolish me, I had no idea that, when it came to lead,  I was ignorant – I knew nothing.

A decade later, I got a crash course. It involved emergency rooms, sudden trans-continental flights, first responders on multiple occasions, several hospitals, many, many doctors and pharmaceuticals, bureaucracy enough to break your heart, intense fear and terrible despair.

It’s a hard road/It’s a hard road, Daddyo/ When my job is turning lead into gold.

Then this week nearly six years later, we raised our heads at last. That the patient would survive the ongoing disease, we had known for a while, That the patient had relearned how to function in the everyday world despite catastrophic losses, we also knew, What we recently discovered is altogether more wonderful. The person we almost lost, through the agency of this enormous suffering, has become the person she always wanted to be.

Concise Oxford Dictionary: The philosopher’s stone – supreme object of alchemy, substance supposed to turn other metals to gold or silver

One of a series of contradictions to despair 115journals.com

 

 

 

Loose Lips: contradiction to despair #5

Despair like the mafia, my father and bullies in general demand silence. “You can’t do anything to stop me and if you do, I’ll kill you. Anyway, it’s your fault.” (See Never Tell, my memoir of childhood joycehowe.com) Convinced of the hopelessness of speaking, we fall silent.

Quite the opposite is true. Loose lips, where depression is concerned, sinks the ship of despair.

Talking is just a riff on union with the divine or connection, assuming a more earthly contact. A phone is a useful tool.

The listener needs no training, except in the art of silence and the odd encouraging remark – how do you feel about that. While it’s hard listening to an hour of weeping and absolute despair, -wine helps, or half an Atavan – it is rewarding because the speaker eventually runs down and may even say she feels better.

The depressed person is only required to voice her conviction that life is totally meaningless, unfair, unbearable and not to be endured, with specific examples drawn from the present at first and then from the dismal past.

There is one essential question: are you suicidal?, followed by what plan have you made? Once this is on the table, strategies can be developed. Such strategies do not involve, “You can’t do that!” They need to be practical and effective. Once a Salvation Army officer sat with me far into the night until I was too tired for self-harm.

In those days, I was too far gone for my immediate family, but suicide hotlines were there 24/7.

In less exigent circumstances, your best friend is your journal. “Dear Constance”, one of my creative writing students began each of her mandatory journal entries. I didn’t actually read these entries, although, as I recorded journal completed, I noted the salutation. I have a 6-ft-high bookcase filled with 159 journals, written between phone calls. After many years, I write less, call less and listen more.

Life’s a bitch. But hang on. Lean on me. Lean on you. Let’s make it through.