Here at my house, we’re in self-quarantine mode. A week ago Saturday, my husband drove up into the mountains to fetch home our son for Spring Break. The next day, Sunday, late in the afternoon, two days AFTER colleges let out for vacation, the Colorado Health Department put out an alert stating that all those in several mountain towns, including our son’s, should NOT LEAVE and, if they had, they should isolate themselves for fourteen days.
Monday I called the Health Department (and was on hold so long that the battery on one of our handsets gave out) and was told, yes, we all had to stay at home for the fortnight. (Just for the record, the woman with whom I spoke was kind and sensible. She answered all my questions and never rushed me to get off the phone.) So the warning came too late for us, and we’re mostly here at home. My husband and son, as recommended, are getting out for solitary walks and bike rides, both of them careful to stay six feet away from anyone else. My M.E. keeps me closer to home, but we are fortunate enough to have our own backyard and a park across the street.
So far, none of us is showing any signs of the virus, but I suspect it’s only a matter of time before at least one of us comes down with it. I confess the prospect of having a tube put down my throat to breathe for me scares me tremendously. Worse is the idea of someone for whom I care being taken away someplace where I can’t ladle chicken soup down her or his throat.
We’d been having groceries delivered, but now the demand is so high for both delivery and curbside pick up that we haven’t been able to schedule a time to obtain food. We’ll be able to hold out until Saturday when, presumably, we’ll be able to shop for ourselves again.
A lot has been written about the perils of isolation, and I feel some of that. Jenny Lawson wrote
I am a natural introvert so I’ve been training for this for my whole life, but don’t let anyone tell you that this is easy for hermits. Personally, I’m feeling very grateful that Victor and I already work from home and Hailey has been in correspondence high school so this shouldn’t really feel very different for us but honestly it really is and it’s very easy for me to fall back into my agoraphobic tendencies and spiral into a depression or let my anxiety spin me out so remember to take care of yourself and others mentally during this time.
I’m another introvert, but just knowing that I can’t go places I need or want to go (I’m missing physical therapy and doctors’ appointments, and do you know how long it’s been since I’ve been to the book store? It’s been over three weeks now, people. I expect to get the literary DTs any moment and start talking to large, pink Elizabeth Bennets, Violas, Bagginses, and Peter Grants) makes me feel trapped. I’m finding that sheltering in place isn’t helping my anxiety and depression either.
But for now, what’s harder is the lack of isolation. I’m used to spending most of my time by myself, but now there are these two big guys in my space ALL THE TIME. They act like they live here. The nerve! The gall!
To make matters worse, our house has paper-thin walls and air ducts that carry sound beautifully. So while it’s possible to close a door and not be seen, there is no aural privacy, no way to have a bit of a cry, throw a minor tantrum, conduct a confidential conversation, or indulge in some maniacal laughter without being overheard.
While I could use a few hours of isolation, that’s probably about all I could take. Ultimately, I’m happier with my family here at home, where I am irrationally believing that I’ll be able to ward off this virus with my well-honed Evil Eye. Please don’t disillusion me.
In my last post, I wrote that my mother’s story became mine, and that is true. But it is not mine alone, not by a long shot, and I am beyond grateful for that, for having family with whom to navigate this odyssey. However, I do not have permission to share their parts in this story. I have not even asked for it because I am not ready for the suggestions and censorship that would inevitably ensue. So I’ll restrict this posting mostly to what pertains to my mother and myself.
In early February — on the first of February — my mother fell ill and wound up in the ICU. The expectation was that she had only days left to live. She told me later that she had gone to the hospital thinking, hoping she’d die there.
However, my mother came from tough pioneer stock and her body held on despite her intentions to die. The doctors put a tube through her back, between her ribs, and into the lung that had been filling with fluid for longer than anyone could guess. Until this procedure, my mother had endured all the poking and prodding, imaging and invasiveness without complaint. But the drainage tube was painful, painful enough that one night it gave her dreadful nightmares of confinement and torture. She thrashed around and dislodged the tube and her IV and woke bloody and wracked. We had no idea then that the pain would never go away.
After almost two weeks in hospital, we took Mom home. Different doctors gave us divergent prognoses: two weeks, a few months, a year. We struggled to make plans. Was it time for hospice? A nursing facility? Could we handle what to come ourselves?
Mom seemed frail beyond belief, almost skeletal, nearly translucent. She had no appetite, no energy for eating. She kept the thermostat at 78º F; in the middle of a bitingly cold Winter, I wore tank tops and shorts and, if the neighbours hadn’t such a clear view through the family room window, I probably would have worn even less.
When the cold drove the cardinals to gather near the patio, my mother perked up. She and my dad, dead these dozen years, kept binoculars by the glass door in the kitchen to watch the birds, and we got them out to watch the red creatures flit through the bushes. (The neighbours never did anything interesting enough to warrant spying, so there was no Rear Window-ing.) My husband, back after a few weeks home, bought some bird seed for the small feeder — an up-side-down stone turtle dish — and the cardinals came and ate, one pecking at the turtle’s up-turned belly as its mate kept watch. (It was all rather Promethean, but I didn’t mention that.) Eventually, the cardinals nested in the bushes lining the patio and in the hedge by the back bedrooms abutting it. It was hard to get a true count, but there were five or six nesting couples. My mother was delighted.
In years past, turtle doves had nested in a flower pot by the kitchen door. This year they flew in, but didn’t stay. I did what I could to coax them back with bird seed and by transplanting some soft ground cover into the pot, but they would only stop by to visit rather to set up house-keeping. They had always been so calm, so trusting, so unfazed by Mom’s comings and going, that she had found their confidence enchanting, and was disappointed that they abandoned her this Spring. I still haven’t forgiven them.
As the rains poured down, as the thunder welled and the lightning flared, Mom grew stronger. I cooked real meals, and she ate just enough to gain some energy. Eating wore her out, though, and she would head to bed to sleep for a while after dinner, always re-appearing just as I finished cleaning the kitchen.
In the hospital, Mom had been put on oxygen and, once home, tubes tethered her to tanks, but the oxygen sharpened her mind marvelously. The forgetfulness we had attributed to age, we now realized had been induced by how little oxygen had been making its way form her lungs to her brain. Nevertheless, Mom would still ditch her tubes to smoke in the greenhouse, sitting there in peace, looking at the yard, the birds, the sunset, and Hamlet’s undiscovered country drawing near. She ate more; the thermostat started to edge down. But the pain from the drainage tube persisted and increased. Meds took off the rim of the pain, but never made Mom comfortable. When others were around, Mom would pull together and push aside the pain, but it would come roaring back and she inevitably paid for her efforts later, panting panting panting from the pain. Despite the on-going agony, Mom was kind and grateful, though being so was patently a Herculean labour.
As Spring came on, the pink-bud bloomed. Bright buds of mauve and purple lined the branches; bright green leaves unfolded; bright cardinals and subfusc wrens perched on the limbs. We enlisted a home health nursing service, but time and again they could not apprehend what Mom needed. They came with pre-conceived beliefs that physical and occupational therapies would strengthen Mom when all they did was wear her out and exacerbate her pain. When we asked for guidance to help with Mom’s anguish over not being able to work, we were told to have do whatever made her happy, but it was being useful, feeling she had a purpose, running the family business that made her feel content.
When we had to make the shift to hospice, the doctor and nurses promised that they would see to it that Mom wouldn’t suffer, but her pain and sense of uselessness were equally anguishing. She felt betrayed by every effort to keep her alive; she wanted the hospice folks to speed her on her way, but state laws forbad such relief. “They promised,” she kept saying. “They promised I wouldn’t suffer, and this is suffering.”
Sitting in the kitchen, looking out at the yard, Mom found herself longing for more colour. I planted such flowers as I could find at the nursery and scattered seeds to bring more blooms later. The rains coaxed out more leaves, more flowers, more growth as my mother flagged and diminished. I intended to go back when there would be more plants available, but Mom started to decline and it was hard for me to leave the house for long.
Mom had some good days, too. My kids flew in and out to visit to see her a few times, bringing life and youth and more love into the house, and reminding Mom that she had helped shape the next generation, that part of her would live on in these quick, bright things. When the end became clearly in sight, Mom rallied a few times to tie up loose ends and legal matters. She wrote in her computer journal, committing to the machine stories of her own mother, philosophical thoughts, unresolved sorrows. She and I had time to talk, to argue politics and discuss Shakespeare. We said “I love you” a dozen times a day.
She’d say, “I hope you’ll miss me.”
I’d say, “I’ll miss you like mad.”
Her last really good day came when the neighbours came over with their grown son, his wife, four kids, and a huge, fluffy puppy. My mother, who loved animals,* especially dogs, was enthralled. She sat on the floor with the kids and the dogs and radiated warmth and happiness from the presence of the pup and the knowledge that, over the decades, her life had become so intertwined with these kind and generous people.
In the end, I think it was the pain more than the cancer that overcame her. Even the morphine she had been taking did little to ease the pain. Everything revolved around the regime of pain medications we kept hoping would bring some relief; eventually, because she was too thin for a morphine drip IV, we were giving her pills or liquid morphine every hour around the clock. I snatched occasional, twenty-minute naps and lost all sense of time. The mid-Spring days grew longer and brighter; my mother’s season diminished and faded.
And then, on 12 May, 2019, my mother died.
And I miss her like mad.
* I always said that I never worried about my getting lost in a forest because I knew all the woodland creatures would flock to her and lead her to the nearest house of hospitable dwarves.
I am back. I have been away because, for several months, I was living someone else’s story. And the story was not mine to tell.1
When I left, it was Winter. In the cold days of February, I thought about other topics about which I might write. There were the cardinals that came close to the houses to glean some of the ambient heat, the reds of the males flashing against the greys of the sky and the clouds, the orange beaks of the females, warmer and more welcome than the sparking males. The flock’s calls and clicks that sounded like notes from a wooden xylophone were equally bright — glowing coals of sound, equally cacophony and symphony. I could have written about the way they came close, but not too close, never venturing onto the patio, never coming under the shelter of the roof, but rather perching on the branches of the pink-bud tree that almost — almost — stretches its limbs under the overhang that shelters the patio.
I thought about telling how, years ago, the pink-bud tree on the patio became diseased and had to be cut down. There was debate about whether the unobstructed view or the shade of a tree was preferable. While we waited for the stump to decompose, new saplings twined up from the base of the old tree and flourished. After some years, it was decided that the new trees weren’t growing right, and the trio of trees were cut down. This time, stump killer was applied to prevent new growth. It didn’t work. The new shoots became a proper tree. And now that tree shelters cardinals in the cold and spills out pink and purple buds in Spring.
I thought about writing about the rain. The grey skies cast down unusually generous rains and soon there were thunderstorms with their rumbles and explosions and lightning shows. I stood on the patio, under the overhang, watching the wildness, catching pieces of lightning with the camera on my phone.
And I thought about trying to articulate the strangeness of watching the heart of one season slide into the respiration of the next in a place that was not home, in a span of time that unspooled yet held still, of seeing Winter’s snows become Spring rains that greened the grass and persuaded the trees to cast on shawls of light green, then coats of darker verdancy. The mock pears shone white with their blossoms;
the cardinals paired off and set up housekeeping in the hedge by the patio and the tall bushes by the back bedrooms. The cardinals and wood doves came for the bird seed I put out; I began feuding with squirrels and keeping an eye out for rats.
I considered describing how I went to the tree nursery and brought home blooming plants in vivid hues and stuffed them into pots along the patio.
I cast seeds wantonly into the pots and planters, along the back fence, in front of the house. The continuing rains washed the seeds into the soil and set the seeds to growing.
I thought about writing about how time morphed into strange shapes and lost meaning and days were the same day and different days and it stopped mattering and time escaped altogether.
I “wrote” in my head, but got nothing on paper, nothing entered onto the computer nor on line. I was too enfolded in other matters, in another’s life, to write anything down.
1. Jenny Lawson blogged about this dilemma too, telling readers of her blog back in January, “I’ve struggled with what to say because I don’t know what to say. I am an open book and I write everything, but this isn’t just my story and I want to respect that,“ and “Turns out it’s really hard to write about emotional things and even harder when they involve someone you love whose privacy you want to protect.”
Here is a relic of my childhood: Mazel and Schlimazel, or The Milk of a Lioness by Isaac Bashevis Singer. Singer tells us a story of two spirits, Mazel (good luck) and Schlimazel (bad luck) and the wager they make one day after Mazel has been boasting how happy he makes people and that everyone loves him, but no one loves Schlimazel. (And I have to say, even though Mazel is basically a good character, he is pretty obnoxious right at the start. But he quickly gets better.) Schlimazel gets understandably riled. He claims that whatever Mazel can do in a year, he, Schlimazel, can undo in a second. And the bet is on.
Mazel seeks out the poorest hut in a poor village and finds Tam, a young man beset by bad luck. And here’s where I start to love Mazel. He sits down next to Tam in his shack with toadstools growing from the walls and gets to know Tam. Even though Tam isn’t really aware of him, Mazel asks Tam questions about himself and while Tam talks — to himself, he thinks, but really prompted by Mazel — Mazel pays attention. Mazel and Schlimazel is a children’s book, a short story — a fairy tale, really — but at this moment in the story the words and illustration depict a moment of genuine companionship.
From here, of course, Tam’s life promptly improves. His luck changes. He is brought to the attention of the king and the princess.
After a good bath and a change of clothes, Tam quickly rises from the court smithy to the court proper.
And while Mazel helps every step of the way, the story makes it clear that Tam is doing the work. Mazel’s presence might have prompted the king to give the young man a job, but Tam labors to do well. And Singer reminds us that “When the humble achieve success, they often become haughty and forget those among whom they grew up. But Tam always found time to help the peasants and the poor.” Tam’s kindness is all his own and not a veneer imposed by Mazel. Tam’s rise becomes a joint effort. Mazel provides opportunities and Tam earns the next chance that Mazel makes possible. Mazel and Tam build on another’s efforts. That’s teamwork, people.
Tam and Nesika, as we would expect in a heteronormative story such as this one, are in love. The king (who never gets a name and has class issues), much as he likes and values Tam, continues to hold onto hope that Nesika will find a prince she can tolerate sufficiently to marry. Nesika (and here is another aspect of the story I love), however, is no mere passive prize. In fact, when we first meet her, she has been driving her father up the wall for refusing suitors for eminently sensible reasons. One laughed too much, another would only discuss fox-hunting, a third beat his dog. The latest suitor (number seven) Nesika rejects “because his boots were foolish.”
“‘How can boots be foolish?” her father asked.
“‘If the feet are foolish, the boots are foolish,’ Nesika replied.
“‘How can feet be foolish?’ her father insisted.
“‘If the head is foolish, the feet are foolish!’ Nesika retorted.”
Nesika is one smart cookie.
But, naturally, a day comes when an impossible task must be accomplished. Tam volunteers to get the necessary milk of a lioness, and the king is so touched he says that when Tam returns, he may marry Nesika.
So off Tam goes, Mazel riding unseen on his own horse right behind him. A lioness with cubs is conveniently hanging around right outside the city, and Tam, thanks to Mazel, strolls right up, milks her, and pops back on his horse. (There is an amusing moment, one that I find a little poignant, when Tam and Mazel leave, in which the lioness comes out of her luck-induced haze and realizes what was done to her and is terribly embarrassed and angry. I don’t blame her for feeling pretty violated.)
Tam returns with the bottle of milk and presents it to the king just as the year is over. Schlimazel steps up and, in the single second that he’d said he would require, causes Tam to mis-speak a single word and the whole house of cards that Mazel and Tam had built so carefully over the course of the preceding year comes crashing down and Tam is sentenced to hang.
And this moment in the narrative is the one that has been on my mind lately. If you want to know how the story ends, you’ll have to read it yourself, which you should do anyway, because it’s a really good story.
The Personal and the Political
This pivotal moment in Mazel and Schlimazel has come back to me often as I have been struggling with both personal and political issues about speech (and yeah, yeah — I know: the personal is the political, but bear with me. I offer my distinction as point on a continuum, not as a dichotomy).
We have all seen, over and over, the harm done by words carelessly or viciously deployed, seen the way these words are making our cultural landscape into something twisted and bleak. Tam’s verbal mis-step and the consequences of a words rose to mind last month when Judge Reed O’Connor of the Federal District Court in Fort Worth declared the entire Affordable Healthcare Act (ACA) to be unconstitutional. With a word (well, OK, a set of words, but ones that amounted to No), Judge O’Connor may have swept aside all the good that the ACA has wrought: coverage for young people through their parents, the slowly stabilizing cost of insurance, coverage for those of us (and we are legion) who have pre-existing conditions. The ACA is far from perfect; we need a Congress willing to pitch in and work together in good faith to argue and compromise and give a damn about the citizens of this country for that to happen.
The rescission of the ACA might not condemn any to hang, but it will cause deaths — slower deaths from illness, injury, despair and poverty from exorbitant medical costs rather than from the rope, but deaths nevertheless. The word of one man can take away essential care from so many — our friends, our families, our neighbors, ourselves — care that can save lives, save minds, and save souls.
And this kind of sudden reversal is not affecting health care only. We are seeing the accelerated destruction of the environment, of foreign relations, of civility, of children’s lives — brought on by ill-chosen words and inexcusable silences. We are seeing years of work and progress undone in moments.
My memory of Tam’s reversal and the degradation of political discourse and practice also connected with me in a more personal way. The personal aspect again has to do with health, my health. Several years ago, I was on high doses of Prednisone for some months. The drug messed with my mood and memory; I recall very little of those months, nothing of what was happening in my son’s life, fragmented scraps of my daughter’s college graduation. For most of that time, I had to sequester myself because I never knew what was going to come out of my mouth. I felt terribly isolated from the people who were important to me and from myself. (Let us give thanks for good therapists.) I usually call my mother a few times a week. It was unsettling to go for more than three months without talking to her.
While I still don’t remember the months I was on the Prednisone, most of my memory is back. The deficit remaining lies in my ability to retrieve my words. I often struggle to get the word I want, the word I can feel in my mind, to come out my mouth. Instead, I hear myself say something that starts with the same letter but is otherwise completely unrelated or a word that has some relation to the word I know is in my head. The link might be somewhat similar in meaning to or the complete opposite of the word I want, but there will some kind of connection that makes sense to me. The result is that, often, I, like Tam, spout out the wrong word at important moments. So far, as far as I know at least, no one has died, though I often feel terribly awkward. No one warned me how drastically the drug was likely to affect me, and no one told me that the effects might be lasting. (Again, my situation is not strictly analogous to Tam’s. No one has tried to put an actual noose around my throat. It just feels like that.)
I have been living with aphasia ever since.
Aphasia. A beautiful name for the implosion of the bridge that connected me to the rest of the world.
That’s how Meghan Beaudry describes the bewildering, frightening experience of losing her words. Amy Roost, author, host of the podcast Fury, multi-talented and -accomplished wonder woman (Check out her web site. Go ahead. I’ll wait) sent me a link to Beaudry’s article, “A Brain Infection Destroyed My Marriage, But Made Me a Writer.”* Beaudry’s aphasia was inflicted by cerebritis, not medication, but like her, I had to “claw back” (exactly the phrase I hold in my mind) my ability to find my words. It’s still a struggle, almost eight years later. And her relationship to language is much like my own. Beaudry “balked at learning to navigate a new computer or phone, but cherished language, treating my words like pets and people: each with their own personalities and preferences….” Losing my words was like being unmoored. snatching at frayed threads instead of have a solid rope to secure me to my life.
Again like Beaudry, I continue to replenish my word hoard, but it is frustrating for me and for those with whom I try to communicate to wait around while I fish for words, needing the right ones with the right shades of meaning for my verbal palette. Poor Tam had a single moment of mis-speaking and was condemned for it. I live with the fear of condemnation, of being judged inadequate or unintelligent, of having people impatiently fill in my pauses and thereby let me know that I am taking up too much of their time.
Returning to the more overtly political, I wonder how many of those who claim to govern for us understand the power of their words, they way they are creating a world of flourishing hatred, selfishness, vituperation, viewed through a lens so narrow that no light seems to get through. I think most of them are aware; I suspect few of them care. Tam (though he didn’t know it) had the excuse of being momentarily beset by some really bad luck; others of us have conditions that make it difficult to find the words we need. But Tam and most of us struggling with impediments work to correct our errors, though we may not always succeed. I don’t think many of our politicians and lawmakers can say the same.
I’m not much of a fashion maven, but I suspect that if we check the footwear of many —too many — of the people in power, we will see that they are wearing dangerously foolish boots.
*Beaudry’s story is headed by a photo of a snail slinking along the page of a book. It’s an apt image: finding words now can be a slow process, one that doesn’t necessarily stay on track, though at least it’s not usually slimy.
OK, OK: I’ll tell you how the story ends, but not how it is resolved, so you still have to read the book. Tam avoids hanging, he and Nesika get married, and Tam and Mazel remain friends (even if Tam doesn’t know it). And here’s another great aspect of the story: when the king dies a timely, totally non-suspicious death, it is Nesika who ascends the throne. Tam happily inhabits his role as consort, providing advice to Nesika when she requests it. But it is Nesika who rules the kingdom.