Tag Archives: serious illness

The Great Loneliness

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Churchill called it the Black Dog

Churchill called it the Black Dog

The great loneliness fell upon me without warning.

True it was Saturday night, the loneliest night of the week, according to Sammy Cahn. True I had just watched Piper’s boyfriend break up with her on the phone, after dissing many of her fellow inmates on NPR and telling her who actually turned her in. True Jamie Fraser,s cousin, Simon, had just died of a musket wound, but Jamie had gone to the British lines under a flag of truce to bid him goodbye in Gaelic. Still it was very sad. I hadn’t spoken to another human being all day. I had phoned but everyone was out. The sky had been heavily overcast when I opened the curtains at 8:30, there was ten minutes of sunshine around noon, but at 3 p.m., I closed them against the gloom.

I shut off the iPad and An Echo in the Bone. I disappeared the TV and sat down on the couch. Winter loomed, months of lost light and cold, days of being shut in by ice and snow. I didn’t even get to my impending mortality before one of the women upstairs broke down, crying “it’s not funny”. I got up to get a glass of water and dropped one of my favourite glasses onto a pyrex bake dish soaking in the sink, smashing it into seven sharp pieces. As I put the wrapped shards into the garbage, the other upstairs resident drove away.

Right, you can feel the great loneliness even if you have a spouse. I knew that. I had felt that lonely before my husband left.

You can feel it in the midst of your family. When I first found myself suddenly on Pine Mountain, I would sit in bed with the curtains open, watching the steep wooded slope, the moon waning above. I was longing for home and the familiar, my no-view first floor flat. If I had known that the family emergency would keep me on the mountain for five months… I didn’t and I fell asleep before the loneliness got well established.

Usually, the year end holidays keep it at bay at least until mid January. You can armour yourself against it even then. I can usually con myself that winter is manageable until a month later, at which time I begin to snivel and consider throwing myself down in a tantrum, but unobserved tantrums are over-rated.

This particular bout of great loneliness follows upon the great good fellowship of family achievement. Four of us together handled a serious illness and a traumatic change in an elder’s life. Elder even than me, which is very elder indeed. In the last five weeks, we broke through to a relaxed and healing companionship. We were going to live after all.

Then I had to come home. Not only did I need to come home. They needed me to. Marriages go better without mother and elders need to feel self-sufficient.

My brother rushed from Brussels to help me make the transition from sunlight and altitude to gloom and sea level. He took one look at me, declared I was not destroyed by my ordeal as he expected. He didn’t actually have to save my life this time. If I had gone to Brussels, as I did last Christmas, I would have been his chief concern, feted by his many friends and his family. Here he has to be shared. This weekend is someone else’s turn.

I used to think I could fight the great loneliness by sheer willpower, by talk therapy, journaling, acupuncture and long walks, identify the aberrant mental attitude and contradict it. Stick up post-its with affirmations on the bathroom mirror. It was exhausting. Now I take psychotropic drugs.

But it’s a long game. I am old enough to know just how long.

Sure, I need to feel needed, as Orange is the New Black has just assured me and for the present, I am not. I wasn’t needed for years, but I’m glad I persisted until I was. Lives depended on it. So here I am again, under-needed and sulking about it.

In fact, old bodies need to rest at this time of year, so home needs to turn into a cave for long sleeps. It is a time to turn away from the outer darkness to the light within.

Having said that I see that the moon is full.

full moonmtn

 

Going Home: leaving the Centre of the World

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mountain 3Air Canada has generously allowed me to change the return date of my $1700 ticket for an additional $210 and I am returning to Toronto -in the comfort of the economy class cabin- on Monday. (As constant readers know, serious illness here in California kept me five months instead of two weeks.) The ticket was bought two hours before I flew down, ergo the high price. Yes, I paid for insurance, which refused to pay out because I knew there was an emergency when I left, and extra for luggage. I intend to thwart the airline of an additional $75 for a second bag by mailing my summer clothes.

Having dealt with that business, I have moved on to emotional impact.

First of all, I have to leave paradise, what I called Shangri-La in May posts, when I first visited and which I later called the Centre of the World, as the Chumash tribe does.

I have talked about the 3 year long drought, bears prowling the village, wildfire on the mountain and early snow. There is potential for large animals on the winding mountain roads as well as ice. There are signs that say,, “Expect to use chains at any time”, amusing enough when the temperature is 100 degrees F. but in  dead earnest. I haven’t mentioned that our ultra-friendly village sits in a valley shaped by the San Andreas Fault.

But I have also talked about the clear mostly silent skies , blue by day and unbelievably star-filled by night. There are no street lights and there is an ordinance against light pollution. Trees, mostly pine, climb the 8500 ft. peak of Mt. Pinos as well as the lesser slopes of the San Emigdio Mountain range and their breathing purifies the air. Here at 5500 ft. the aspens and poplars are florescent yellow now. The house in the pines is under a steep slope above a pond. House and pond are darkening by 4:45.

When snow fell on Hallowe’en, flocks of birds came down from the mountains. One morning there were many Brown Thrasers and others looking for food on the ground. The Stellers Jays, which amused me in May, flit back and forth between the trees, entertaining Clara and me when we drink our morning tea on the deck of my other, hillside  home. Woodpeckers search for grubs, head down on a pine tree. One jay likes to land on the deck rail and stare at the open door as if waiting for breakfast. But feeding a bird is inviting a bear. A hawk sat in a tall tree at the house in the pines this morning. Yesterday, the family golfer saw an immature condor. His first clue that it was an enormous bird was the slowness of its wings.

There is a horse trail that runs 3 miles down to an immense pine, over 20 ft around and 600 to 1000 years old. There are many other hiking trails. The Chumash Wilderness is accessible only by an ancient trail, which the firefighters had to use to get to the fire and crush out the spots the helicoptered water didn’t hit.

Our patient can do the 6 1/2 mile hike to the big tree. I cannot.

There are other amazing things about this place, for example, I can leave here in my fur-hooded jacket in near freezing temperatures and drive to Bakersfield where it is 90 degrees -altitude and an hour’s driving – north.

Not a bad place to find yourself marooned!

Then I will be leaving behind the close companionship that developed in the family as we struggled with a potentially fatal illness. At first we were united by grief and fear and general angst and now by joy that we have found a way to manage the disease. Our patient no longer needs constant care, even though she is still recovering.

Then there is the actual arrival home to deal with, walking in the door of my home. I confess I am afraid of that. I am told that since no one has lived there for 5 months, the dust will be only a light film not the greasier stuff that cooking and shedding skin cells produces. I did ask my sister to make my bed. I leapt out of it on June 4th when I got the phone call and started booking my ticket and throwing stuff into a suitcase. It’s as if I feel that the place is going to reprimand me for neglecting it.

I visualize it, the pictures on the walls, most of them painted by friends, except for the large photograph of the Seine by night, the Fiestaware cups on the sideboard, the bright rugs, the big rocking chair, so I will be familiar with it.

I have made about 55 trips to Southern California, two of them for several month’s stay and I always find the adjustment back to a long distance relationship with my family here difficult for a few days, not to mention adapting to Toronto, a colder place in every sense of the word.

This time, however, I will be taking back a different self, one more confident in support that transcends earthly connections, comforting as they have proved to be. I have the beauty and peace of this place securely memorized. I will have the memory of sitting alone, tearing a baguette for croutons, and suddenly feeling that I really was at the centre of life, at the centre of what Greek legend calls Eros.

 

 

Evidence of Things Unseen

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Now faith is the substance of things hoped for, the evidence of things unseen,
Hebrews 11.1

Here in the mountains of Kern County, California, we have been struggling with serious illness since the first of June. Finally, we have found the right doctors, got the right diagnosis and medication that works. What still doesn’t work is the bureaucracy that is paying for the treatment.

To skip even one dose of the several medications is to court disaster and yet again and again we turn up at the small pharmacy -the only one less than an hour away- to discover that we are over the monthly limit of 5 prescriptions, that we have used too many pills of that kind this month (doctor had changed dosage), that we can’t get one or another for five days, until we get a TAR, until we get a PA, unless we phone in the day before, never mind that we have been calling for 4 days prior. On the latest occasion it was the last reason.

Okay, confession time, I lost it. I leaned over the counter and explained as quietly as I was able, the possible dire consequences, the least of these was hospitalization. I was assured that the pharmacy had our best interests at heart, blah, blah,blah. That they just didn’t carry that medication and it would be ordered in only if we phoned the day before. Too much smiling from the other side of the counter. Too much eye shadow come to that.

“Consider it ordered,” I said.

The patient had fled to the car. I was so upset, I couldn’t actually see.

“Here are the other prescriptions,” said the Cheryl the clerk. “That will be $137.”

Whaaaa?

Blindly, I undid the bag and began to read the labels. The whole point was that the patient couldn’t pay for meds. As one of the meds’ monitors, I know every med name and dosage. None of these were familiar.

“These are not ours,” I said, pointing to the patient’s name. In fact they were for the patient’s mother-in-law, but I was too annoyed to bother saying that.

Cheryl’s eyes bugged out. As I left, I could hear her saying, “I can’t believe I….”

Next day, after 4 p.m., I drove back down the winding mountain road, to pick up the prescriptions. Yes, one was made up, although the other less urgent one wasn’t. As I waited for it to be done, I stood at the check-out counter.

Cheryl leaned over and said,” I just want to say…. I couldn’t sleep last night. I didn’t know what to do. I felt so bad. Finally, I decided to pray..”

She went on almost in a whisper, quoting a Bible verse with apologies because she really didn’t have it quite right, but it had to do with God’s help when you hit the bottom.

I touched her hand to reassure her. “Of all the problems we have had here, that was the least,” I said. “But thank you for praying. I’m not much good at it, but others are also praying.”

“God hears all prayers,” she replied.

Cheryl is one of those fervent Christians that scare us a little with their right wing views. Our idea of God is much more indwelling, not an all-powerful father or a son that will save you if only you surrender and believe. Perhaps, all things are possible, but they start within our hearts, we think and when you are grappling with life and death, God’s idea of an ideal outcome may not coincide with yours.

That night as I began to fall asleep, I felt the earnest love Cheryl radiated comfort me and  smooth a path for loving support from beyond.

The nature of God and our different interpretations of it seemed irrelevant then. Trying to have faith in God, too daunting. Faith in love that is another matter, our family’s loving and unconditional support of the patient, my own 5 month sojourn far from home, our 24/7 commitment, the wonderful doctors we have finally found, even those drugs with their unpleasant side effects. These are born of love.

And the best prayers may be tears.

Family – a committee designed by a camel

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camelI saw a sign in a gift shop the other day, which read,”If he said he’d do it, he’ll do it. Don’t keep nagging him every six months.”

This summed up my relationship to my husband when I was married. It remains a bit of a problem even now. Yes, I can rely on my children’s father — eventually.

I’ve led a selfish life for years now. At least three. At 75, I stopped volunteering. For 10 years prior to that I headed the shipping committee for a charitable organization. We shipped books and t-shirts around the world, making a good deal of money for the club. My committee worked well; I left the other 4 alone to do their jobs. Trouble was the committee that managed the club didn’t extend the courtesy. I knew what we needed to cover orders, but I wasn’t allowed to order goods. That meant I ended up taking the flak when the club in Sydney or Warsaw didn’t get what they ordered. So I figured 10 years is enough and quit. As it turned out supplying instruction books wasn’t that important and trade died off. Recently, I got an email from the management asking if I could remember how many books we last had printed and by whom. I ventured that all relevant invoices had been filed. By me. Of course. But I had not committed that information to memory.

My trouble with committees is the only good ones are run by me.

As the mother of young children I ran the committee. My husband made decisions about gardening, the pool, the sailboat and the cars, but I made all the important ones. Mostly, things worked well, although my adult children seem to remember my style as autocratic. Well, what working mother’s isn’t? My son was once asked by a friend whether I denied him dessert if he didn’t eat his vegetables. He said, “No, she just threatened to kill me.” Nonsense. I never said that. He misinterpreted my look.

As they grew up, I had to back off the dirty look and bring my at-home leadership  style into line with the more laisez-faire one I used supervising the teachers who worked in my department. Vegetables were the least of my concerns. One of my teenagers was driving. They went off to an alternative school. It was the late 70’s – what drugs were they taking? Etc. But Blake and I soldiered on, trustfully in that laisez-faire way and nothing terrible happened.

Just when I had settled down to living for myself, I was suddenly drafted back to family duty.

How surprising! I had made it through the helpful grandmother stage, relatively unscathed. True I had to fly across the continent to do that, 2 or 3 times a year over a period of 25, but I read  bedtime stories and babysat and helped boys learn to swim and drove them to school and went camping with them. Now they were both adults. I was complacent. All future trips would be recreational.

Not. Illness struck and serious illness at that.

As soon as daily hospital visits ended, it began to be clear that 3 people really can’t live in 950 sq. ft. with 1 bathroom. Then the family grew, exponentially for a while and then shrunk back down to 4. Mother-in-law had come to live in the mountain village too. So that is how we 2 mothers came to live at the Reality Hotel – see previous posts- and later in the house she bought.

I learned pretty darn quick that my habit of declaring absolute opinions didn’t go over well. There were serious medical decisions to be made and apparently, the principals had to be given equal voice. Apparently, I had to back off and take a lesson from Marshall McCluhan, “I don’t necessarily believe everything I say.”

Meanwhile my new best friend was my son-in-law’s mother, Clara, who has a style all her own. She packed up to move by first pulling everything out of closets, cupboards and drawers and only then did she begin to put things in boxes. We heard daily reports of the chaos. When the house deal finally closed 7 weeks later and things began to arrive, Clara unpacked in exactly the same way. She emptied box after box and sat things everywhere. At a modest estimate, she has 2000 decorative objects, and she can tell at which thrift shop she bought each one. My room was the only sanctuary, since all I had fitted in one 23 K. suitcase.

Organization is my middle name, so I had to keep a tight rein on myself. I let myself wash each piece of china and re-stack it in categories. When Clara put a couple of mugs in one cabinet, I allowed myself to put the rest in there -at least 60 of them. Gritting my teeth in impatience, I awaited further clues. The plates, the pans, the glassware and the pantry have now been allocated.

Meanwhile I have taken it upon myself to initiate floor care. The highlight of my day today. That laminate shines up really well. I know pathetic. But there’s still no television in the house and the night life here consists of Madd Bailey’s Bar, live music Fri to Sun. Food can be ordered up from Mommy’s Roadhouse.

Or you can sit on the porch and watch the moon rise over the mountain.

So much for growing rigid with age.

The title makes no sense unless you are familiar with the saying, “A camel is a horse designed by committee” and maybe not even then.

 

 

 

 

Never Let Me Go

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never let me goWhen I finished reading Kazuo Ishiguro’s novel Never Let Me Go, I sat still on the sofa and thought about it. I felt unbelievably moved. What is it really about? Is it about our inhumanity to each other? Certainly, there is that.

Set in an alternative 1990s Britain, Never Let Me Go depicts Hailsham, a boarding school where children are encouraged to be creative and are given frequent medical examinations. They don’t go home for holidays. Hailsham is their home. Are they orphans? Gradually, as they grow older we learn as they do that they have been cloned to become donors, organ donors.

The novel was short-listed for the Booker prize in 2005, but I steadfastly refused to read it  because I was too squeamish. Being stuck on a mountain made me less choosey and, having more or less enjoyed Ishiguro’s When We Were Orphans, I downloaded Never Let Me Go on my iPad mini. Whereas the stilted voice of the detective in When We Were Orphans irritated me, the humane voice of Kathy in Never Let Me Go drew me in immediately. Very soon I loved the three main characters, Kathy, Ruth and Tommy.

They are being raised outside of normal society so when they are released into it to live out their abbreviated lives, they can only guess at how it actually works. For much of the time, they are equally in the dark about the donation process. Mercifully, so is the reader, although we do eventually see Ruth and Tommy in recovery between donations. Kathy is their carer supporting them through the process. Four donations seem to be the limit, during or after which, donors complete. Kathy is about to finish her years as a carer and start being a donor. Is it possible that there really is a way to get a deferral if donors can prove they are in love?

The book had a cathartic effect on me. Like a Greek tragedy, it incited “pity and terror”. No doubt this had to do with the fact that I had spent much of the last few days sitting by a loved one with a serious illness – a very heart opening if fearful experience. A never-let-me-go experience.

At the same time, Peter L. Bernstein’s book about risk Against the Gods came to my attention. Bernstein contends that people are not so much risk averse as they are loss averse. He quotes Amos Tversky who says that “the human pleasure machine is much more sensitive to negative than to positive stimuli”. We can imagine a few things that would make us feel better, but “the number of things that would make you feel worse is unbounded.” And some losses we know we could never recover from.

Reviewing Never Let Me Go in the Guardian, M. John Harrison said that the novel “isn’t about cloning or being a clone”. I think he is right. The donors endure, fulfilling their role as it has been laid down for them. The novel is about life as we all experience it. Harrison ends his review: “It’s about why we don’t explode, why we don’t just wake up one day and go sobbing and crying down the street, kicking everything to pieces out of the raw, infuriating, completely personal sense of our lives never having been what they could have been.”