Thierry Sagnier's Blog, page 20
June 24, 2016
Dépaysement.
The French word, dépaysement, has no English translation. I know; I’ve looked in a number of French-English dictionary and online sites. It’s not homesickness, which translates literally as mal du pays, and neither is it a garden variety of loneliness or solitude or, as the app on my phone tells me, a change of scenery. No. Dépaysement’s closest meaning may be what Wolfe referred to when he wrote You Can’t Go Home Again yet did not quite manage to describe adequately.
My mother, after we came to the States, used the word often when confronted with the sudden realization that things were not quite right, that a given situation she faced in this new and very strange land was just beyond her understanding, and that though she might handle it passably well, whatever she essayed would not be entirely correct. Her American acquaintances, she knew, would smile because they always smiled at the little French woman with the horrible accent. But deep down, she feared, they would also judge. Le dépaysement, then, was the realization that no matter what, and no matter how long one stayed in a country not of one’s birth, there would always be a hint of not meshing properly, of knowing the rules but not fully understanding why they existed, when they should be applied, and to whom.
Dépaysement is wearing a shirt that’s too tight with a pair of trousers in need of a belt. It is brown shoes and blue pants; a suit and white athletic socks. Most people might not notice, but many will. Dépaysement, simply put, is not fitting in properly; it is a disorientation just big enough to make you lose your way.
I came to the US as a kid. I spoke five words of English and was, as far as I can remember, the only foreign-born child in my class. This was not dépaysement as there was nothing subtle about it. I got beat up some because kids from other countries were not popular. I learned the language as a matter of survival, and I managed to ape others’ behaviors to fit in rather clumsily. I never got the subtleties, but became used to that. I tried hard as hell to be popular and never quite succeeded. Dépaysement. The mid-60s to mid-70s were great, since these were the times when one was not supposed to fit in. That decade was also ideal whenever I returned to France. Most of my native country truly loved everything American then, and being Franco-American was the apotheosis of cool; one could do no wrong, no matter how out-of-synch one might be.
But that period, both here and overseas, ended amid the rout in Vietnam and the emergence in the Western world of a new form of all-encompassing capitalism largely empty of humanity or goodness. France, the country I left as a child, became another nation altogether. The streets and names and topography remained the same, but the soul of the culture changed radically, espousing the same values found in Texas or Delaware or Indiana and buying into the same shortcomings. I remember feeling dépaysementas I sat at a café in Paris near the Parc Monceau in the neighborhood where I’d been raised. And lately, I’ve been hit with massive waves of dépaysement right here in my adopted home.
Nowadays I often feel my comprehension of an event is just short of complete, or that though I might get the gist of a conversation, the minor points will elude me. More and more I’m confounded by the behaviors of others, by reactions that appear overblown or not entirely appropriate to the mildest provocation. Increasingly, I just don’t quite getit. I am told things have changed and are now a certain way that they were not before, and I fear a look of confusion settles on my face. This frustrates my friends and acquaintances, I know.
But I am not reaching my dotage.
It is dépaysement.
I am becoming my mother.
I complained that I had no shoes until I met a man who had no hat.
June 23, 2016
But...
Mixed results on the last cancer tests I underwent a few hours ago… The doctor was pleased that my bladder was free of tumors. He smiled, congratulated me, and then added, “But there’s something else going on.”
Ah crap. Goodness and bonté. What is it? We don’t know. Bad cells showed up in the last batch of tests. It’s impossible to pinpoint where they might originate, and I promised Arielle I would not do any medical research on Web MD (I did that earlier this week and was left pretty discouraged. Apparently bladder cancer is on the upswing and survival rates are not looking good after several surgeries. I was apparently resistant to the BCG chemo—not a good sign, etc.)
So the merriment was attenuated.
My experience is that four years ago it took my HMO almost five months to originally diagnose my cancer. I was given various opinions and fed various antibiotics until my General Practitioner saw something that gave her pause. She sent me to a urologist who took another half-month before he scheduled and performed the first of many cystoscopies. In a rare twist, it turned out this particular doctor had himself recently been diagnosed with a form of cancer, and when I asked what was wrong with me, he steadfastly refused to use the C Word, until asked point blank, “Is it cancer?”
He nodded. It was.
All this to say I’m a bit unhappy with today’s results, only because I know it might take months to get this new whatever-it-is situation examined. I am very, very tired of all this, the blood and urine tests, the scans, the cystoscopies and surgeries and chemo and sleeplessness and sadness and silly drama that seem attendant. I am weary of making demands on my friends and feeling less-than. Additionally, on two occasions in the last few years, tests have come back false-positive and engendered more anxiety. This is not cause for celebration. I—and others—have noticed that my mood spirals down around test-time and that I’ve been known to become less than rational.
Still and all, there’s some relief. One cancer down, at least for three months, and I’ll deal with whatever is coming as best I can.
Like the tee shirt says, Cancer Sucks. Now it’s time to write about cheerier stuff.
I complained that I had no shoes until I met a man who had no hat.
June 19, 2016
Fear
Fear defeats more people than any other one thing in the world. Ralph Waldo Emerson
My fears are strongest in the morning, and they arise when I do. I know while I’ve been sleeping, they’ve been exercising, doing push-ups and crunches in the basement, gathering force and potency in the predawn hours. I often wonder if the insomnia I’m currently dealing with may have taken root because of them. If I don’t close my eyes, I won’t wake up fearful. At any rate, when I sleep, by the time I’m back among the conscious, the fears are flexing their massive biceps and taken on unfair proportions.
They run the gamut. Financial insecurity; Alzheimer’s, cancer, automotive breakdowns and air conditioning failures. Age, loneliness, diseases I have never heard about, fear of failure at what I’ve been doing for a long, long time now—writing—and the belief that no matter what I put together, I will not be published or recognized or worse, paid. Fear that I will lose my home through lack of income, that I will not be playing the lottery the very week I would have won it. Fear that the people I love will move away or vanish as many have already; fear of life and of death and of whatever lies in between.
I don’t know whether this is normal or not and I don’t remember harboring such qualms a few years ago. I speak with people who exude serenity and have no uncertainties about what may—or may not—come to them. They believe their Higher Power somehow is aware of their every twitch and desire and will come through for them, not matter what. I have no such confidence. My largely faceless higher power is too busy laying environmental waste to the Sudan or loosing floods in Pakistan to pay much attention to me. Or at least, that’s the way it seems.
Call it a step back from faith. I’ve always believed that faith is not leaping from A to B, it’s leaping from A without knowing what you are leaping to, and lately I’ve been unwilling to commit myself to such a jump. I don’t see the safety net below and don’t trust the rescue squad to get there in time.
Buddhists believe that the whole secret of existence is to have no fear. Judith Lief, a noted Buddhist teacher, writes, “The essential cause of our suffering and anxiety is ignorance of the nature of reality, and craving and clinging to something illusory. That is referred to as ego, and the gasoline in the vehicle of ego is fear. Ego thrives on fear, so unless we figure out the problem of fear, we will never understand or embody any sense of egolessness or selflessness… part of the undercurrent of fear is the fear of being found out, of being exposed as a big fat phony who is creating a solid illusion out of thin air.”
Hm. Maybe. Certainly a basic fear is having my insecurities, my shortcomings and character defects exposed. If I am seen in what I’m afraid is my true light, I am probably not being viewed as I would like to be.
Another teacher, John Daido Loori, writes, “Fear arises the moment you ask yourself, what is this all about? Inevitably, it has nothing to do with right now. It has to do with the future, but the future doesn’t exist. It hasn’t happened yet. The past doesn’t exist. It has already happened. The only thing you’ve got is what’s right here, right now. And coming home to the moment makes all the difference in the world in how you deal with fear.”
That makes sense too, in both a simplistic and horrifically complex way. Of course I am what I am now, but isn’t that only the present tense of what I was? And how can I not be concerned about the future! It looms; it threatens. It’s scary.
What I would like it to become is illustrated in a story told by Sylvia Boorstein: “A fierce and terrifying band of samurai was riding through the countryside, bringing fear and harm wherever they went. As they were approaching one particular town, all the monks in the town’s monastery fled, except for the abbot. When the band of warriors entered the monastery, they found the abbot sitting at the front of the shrine room in perfect posture. The fierce leader took out his sword and said, “Don’t you know who I am? Don’t you know that I’m the sort of person who could run you through with my sword without batting an eye?” The Zen master responded, “And I, sir, am the sort of man who could be run through by a sword without batting an eye.”
Um. I may not have such equanimity, but perhaps this is something to which I could aspire.
The one good thing in all this is, I’m pretty sure most of the fears are temporary. Over a lifetime, in spite of some wretched events, I’ve had far more good things happen to me than bad ones, and there’s no reason to think the trend will stop now. There’s a lesson here somewhere but I’m damned if I know how to apply it to the anxieties that come with the morning.
I complained that I had no shoes until I met a man who had no hat.
June 12, 2016
Touching the Thereafter
My parents died decades ago. They were good people who’d both fought in the Big One, and when they came to America, the country was still a land of welcome, wonders and innovations. They were the classic immigrants who left Europe behind, abandoned the sooty streets and grey buildings of Paris to find a yellow clapboard house in the Maryland suburbs, with a yard and a driveway and an outbuilding for the garden tools and mower that my mother—being a city girl—did not know how to use until she was shown.
They spent a bit more than 25 years here, became citizens who voted and appreciated what the land had to offer, and then when my father retired, they returned to France with what I think was a sigh of relief. Not that there was anything wrong with the States—there wasn’t—but they were French to the core and wanted to be in Paris where, as newlyweds, they were improbable radio stars, the main characters of the GI John et Janine show, where Janine saved the day and GI John, a not overly bright American soldier, basked in the love of his wily French wife.
We all anticipate our parents’ death, but when it comes and make orphans of us, it’s never quite what we expect. My mother died in 1992 at the American Hospital in Paris where some 46 years earlier, she’d given birth to me. My father died in the States four years later. He never fully got over his wife’s passing.
I always thought somehow one or both would send me a sign from Over There, but they never have. In fact, their total silence is almost disturbing. Almost everyone I know who has lost parents has told me that at one time or another, they felt the parents’ presence nearby, reassuring in moments of sadness, loss or stress. Some have said the presence was almost physical; they were touched or kissed or hugged by long-gone mothers and fathers, and were never quite the same afterwards. Call it a spiritual experience or a miraculous moment if you believe in such.
In my family, though, there was hardly ever any touching. In fact, Arielle asked me last night about that and I had to admit that while alive, my parents almost never had any sort of physical contact with me, so I suppose it’s not surprising that there would not be posthumous touching either. I am discovering that this lack of bodily interaction has stayed with me. Now, much older, I miss it. There’s a hole where the warmth of someone’s touch should be and it’s an impossible vacuum to fill.
When I was first diagnosed with cancer, I was certain one or the other would come to advise and reassure. After all, they both went through it too—my mother died from hers, my father recovered from his—and they must have had words of wisdom ready to go.
My father was stoical about his diagnosis when he was in his early 50s. He had weathered a war and I always had the impression he felt ready to go at any time, and would do so without regret. Indeed, he might even welcome the departure. My mom panicked over his cancer but bore her own with amazing courage. She was playing bridge with her cronies up to the end, never letting on that she was in frightful pain. In fact, I’m not sure she ever told my father the full extent of her illness, or that she’d been diagnosed with liver cancer, a killing version of the disease. Though she knew her death was impending, for good or for ill she opted stay silent almost until the end.
It saddens me there’s been nothing, not a word or touch or breath from my parents, not even the intimation that there may be something out there. I guess that 25 years ago when I spread my mother’s ashes on the green grasses of the Père Lachaise cemetery in Paris, and followed the same ritual for my father a few years later, well, that was it. Whoever and whatever they were was subsumed by the greater universe. Whatever individualities existed simply ceased to be.
That’s strange to me. I’m not religious but I’d like to think something—other than the fading memories of us that are held by others—remains after our death. And maybe it does and I simply haven’t been privy to it. Whatever. I suppose if they’re up there and want to reach, Maman and Papa know where I am better than I know where they are. And even after many years, I would welcome their touch, no matter how slight or fleeting it might be.
I complained that I had no shoes until I met a man who had no hat.
They spent a bit more than 25 years here, became citizens who voted and appreciated what the land had to offer, and then when my father retired, they returned to France with what I think was a sigh of relief. Not that there was anything wrong with the States—there wasn’t—but they were French to the core and wanted to be in Paris where, as newlyweds, they were improbable radio stars, the main characters of the GI John et Janine show, where Janine saved the day and GI John, a not overly bright American soldier, basked in the love of his wily French wife.
We all anticipate our parents’ death, but when it comes and make orphans of us, it’s never quite what we expect. My mother died in 1992 at the American Hospital in Paris where some 46 years earlier, she’d given birth to me. My father died in the States four years later. He never fully got over his wife’s passing.
I always thought somehow one or both would send me a sign from Over There, but they never have. In fact, their total silence is almost disturbing. Almost everyone I know who has lost parents has told me that at one time or another, they felt the parents’ presence nearby, reassuring in moments of sadness, loss or stress. Some have said the presence was almost physical; they were touched or kissed or hugged by long-gone mothers and fathers, and were never quite the same afterwards. Call it a spiritual experience or a miraculous moment if you believe in such.
In my family, though, there was hardly ever any touching. In fact, Arielle asked me last night about that and I had to admit that while alive, my parents almost never had any sort of physical contact with me, so I suppose it’s not surprising that there would not be posthumous touching either. I am discovering that this lack of bodily interaction has stayed with me. Now, much older, I miss it. There’s a hole where the warmth of someone’s touch should be and it’s an impossible vacuum to fill.
When I was first diagnosed with cancer, I was certain one or the other would come to advise and reassure. After all, they both went through it too—my mother died from hers, my father recovered from his—and they must have had words of wisdom ready to go.
My father was stoical about his diagnosis when he was in his early 50s. He had weathered a war and I always had the impression he felt ready to go at any time, and would do so without regret. Indeed, he might even welcome the departure. My mom panicked over his cancer but bore her own with amazing courage. She was playing bridge with her cronies up to the end, never letting on that she was in frightful pain. In fact, I’m not sure she ever told my father the full extent of her illness, or that she’d been diagnosed with liver cancer, a killing version of the disease. Though she knew her death was impending, for good or for ill she opted stay silent almost until the end.
It saddens me there’s been nothing, not a word or touch or breath from my parents, not even the intimation that there may be something out there. I guess that 25 years ago when I spread my mother’s ashes on the green grasses of the Père Lachaise cemetery in Paris, and followed the same ritual for my father a few years later, well, that was it. Whoever and whatever they were was subsumed by the greater universe. Whatever individualities existed simply ceased to be.
That’s strange to me. I’m not religious but I’d like to think something—other than the fading memories of us that are held by others—remains after our death. And maybe it does and I simply haven’t been privy to it. Whatever. I suppose if they’re up there and want to reach, Maman and Papa know where I am better than I know where they are. And even after many years, I would welcome their touch, no matter how slight or fleeting it might be.
I complained that I had no shoes until I met a man who had no hat.
June 10, 2016
Secret Blog
I’ve been blogging for years. According to stats maintained by the various blog sites, I’ve been read close to 200,000 times, which if it were anything other than blogs would be pretty neat. Really popular blogs pull in millions of readers, though, so my success is at best modest.
Part of the issue is that I’m a generalist in a specialized age. I have friends who write tech blogs for which they actually get paid. I think at my best I may have managed to flog a couple of my books upon unsuspecting readers, but blog-writing has been a labor of love. And that’s fine; I love writing about my parents, my childhood in Paris, and what it was like first coming to America. I’ve chronicled my cancer issues with a lot less joy and will keep doing so, I think, though I’ll admit that I fear this particular subject is getting boring. How many times can I write about surgery and chemo and the attending side-effects? I’ve done a lot of writing on writing. I’ve written about friends and people I’ve met in coffee shops, and the really important folks in my life, those I love and occasionally ache for, those who make me stop and think and reconsider antiquated notions. I’ve done stuff on relationships created and relationship betrayed, on the maintenance of a goldfish pond, band gigs, the Olympics, the Tour de France, the benefits and shortcomings of living alone (great when you’re young, not so great as you get older), cleaning house, building furniture, and the care and maintenance of pedal steel guitars.
I’ve done some unhappy blogs too. I’m prone to SAD and sun-downing, and the holidays can reduce me to tears, although I don’t really know why. I’ve written pieces on the subtle differences between solitude and loneliness and, at times, have received wonderful comments from people I’ve never met but who apparently read me regularly. I’ve written about that strange feeling I get when attending a crowded event by myself—a parade, most recently, or a museum, when being in surrounded by hordes of people is often more isolated than sitting in my basement in front of a screen.
I’m a firm believed that some people talk to their shrinks, but writers write. I fact, those very words are above my desk, and writing blogs has at times been an enormous source of emotional relief.
But more and more I’m finding there are issues I never dare write about. There are things I’m embarrassed by, or simply fear to share with readers. Aging, intimacy or the lack thereof, deep-seated fears, pain and dying, the angst associated with selling my home and finding a new place to go, that feeling of failure that is growing more pervasive daily. More and more, such themes are occupying far too much space in my mind and I don’t know what to do with them. They demand honesty in the telling, rather than the veiled references I’ve been using when skirting a sensitive subject.
So I think what I am going to do is write a secret, totally anonymous blog.
No doubt this is a form of literary cowardice. Hiding behind anonymity often is, since it implies I may have the courage to state opinions, but not to be identified as the holder of these opinions. Or that I am ashamed of harboring and showing particularly feelings I’ve decided are unmanly.
I’m apparently not the only one with a desire for anonymity. A brief internet search brings up a long of list of websites put up by people who want to share with no name or address. Some are tremendously sad, true calls for help that, I fear, go unanswered. Others are statements of fear, desire, and frustrations. Others still are odd and oddly affecting. “I don’t like Harry Potter,” reads one, and I wonder what prompted a person to post such a deep, dark secret.
Whatever. It’s worth a try.
I complained that I had no shoes until I met a man who had no hat.
June 5, 2016
Scam
It’s four-thirty in the morning and I am responding to a Facebook scam because it’s a dreary Sunday and I have no better thing to do. No, that’s not true, there are a hundred things I could and should be doing, but I’m tired and listless but I can't sleep, and I'm sort of blue so this seems like a good option to pass the time. Better, at least, than binge- watching Dexter, which I may do later anyway.
I’m not sure if the person messaging befriended me or vice versa. I suspect the former, since I have a relatively few FB friends and my texting on that site is pretty much limited to one person. Regardless, the FB friend who sent me the “Hello, how are you?” message appears to be an all-American girl with a toothy smile who’s in… wait. Ghana? Ghana, West Africa?
I’ve been to Ghana. It’s a lovely place with fabulous people. I really liked it there. I spent a few weeks in-country and can attest that there are relatively few Ghanaians who look like all-American girls.
She tells me she is actually from Miami but four years ago her father died and her mother decided to move to Tamale, Ghana, and open a grocery store. Her English appears awkward; she says “Ok” a lot.
I’m willing to admit a certain attraction to relocating from Florida to West Africa. Within seconds, I get a text asking about my marital status. Do I have kids? A pretty wife perhaps? Do I smoke, drink, or take drugs? How old am I and what do I do? And how are my lovely friends?
For her part, my Ghanaian correspondent is very brief in her answers to my queries. When I ask what she does, she tells me she is five feet seven and athletic, unmarried, 31, no kids.
“But what do you do?” I ask.
“I am five feet seven and athletic, unmarried, 31, no kids.”
Alrightee then.
A couple of months ago I received a somewhat similar series of texts from a woman in France who claimed to be a good friend of Nicholas, my older nephew. Nicholas, I am very proud to say, is the French ambassador to Toronto, so imagine my surprise when Nicholas’ friend sent me a scantily clad photo of herself and asked if I had a video camera.
Hmmm.
Back in 2000, it was Nigerian princes, Chadian ladies who had somehow been bequeathed fortunes, and wives of Christian missionaries in Laos who needed my help getting large sums of money out of the country.
One time, I thought there might be a good newspaper or magazine article to be written, so a scammer from Senegal and I exchanged emails for a about a week during which I was queried about bank account numbers and what I would do if I suddenly received $12.5 million with no strings attached.
My writer was patient. When I finally emailed and said I knew what the con was, I got a response from my offended pen pal and potential business partner. “You are not a very nice man,” he said, using many exclamation points. That may have been true.
Three years ago I thought I might make some extra money giving French language lessons, and I announced my intentions on Craig’s List. The next day, I received a note from a man who wanted to sign up his 18-year-old daughter for a month’s worth of daily lessons. He sent a photo of a pretty all-American girl with a nice smile . I quoted him a price so advantageous, the man said, that he wanted to contract immediately for two months of lessons. Could he have my address? He would send me a bank draft and we would attend to details later.
Sure enough, within forty-eight hours, in the mail was a check for $6000 made out to me on a James Madison University account. Then I received a flurry of emails with convoluted instructions. My man had lost his wallet and credit cards. His daughter was distressed by the prospect of losing the lessons she'd so been looking forward to. Would I, could I deposit the check immediately and, if I didn’t mind, use part of the funds to open a bank account she could access for living expenses while she was taking lessons?
So, okay, I am not financially savvy. I am fully aware of this. Too often my idea of a good business deal is to buy high and sell low. But still… My suspicions were further aroused when the check-sender, having heard of my excellent (he actually used the word superlative) reputation as a teacher of French, offered to up the ante. There’d be another check in the mail, this one for $8000. It arrived two days later. Now here’s a fact: I speak French fluently and I’m a pretty good instructor, but $14,000 for French lessons is excessive.
A little research clarified the scam. I would deposit the check. My bank would then immediately credit this to my account and wait for reimbursement from the James Madison bank. I would draw on my new-found assets. The James Madison check would bounce in a week or two. By that time, the 18-year-old daughter would have exhausted her living expense funds and I’d be tagged by my bank for reimbursement.
This type of rip-off happened twice more, once when I was selling a rather expensive Italian car online, and another time when I listed two fairly expensive Erté lithographs on eBay.
Oy. I think I’m safer not dealing with online propositions. And anyway, Dexter is calling.
I complained that I had no shoes until I met a man who had no hat.
May 19, 2016
The Last of the Chemo?
Tuesday was, hopefully, the next-to-last chemo session for a while, and, if I am very, very lucky, perhaps ever. This reminds me that a long time ago, someone told me my body is just a vehicle that gets me from point A to point B—or maybe I read that in some New Age book. Nevertheless, it’s an image I can live with, and, pushing the analogy a bit, I can recognize that the minute I drove my vehicle off the new body lot, it began to depreciate. We basically start aging from the moment we’re born, and a goodly part of our existence as functioning humans is spent keeping decay at bay. In fact, it strikes me that it’s a wonder most of us survive to any age.
I look back over the past few years and, aside from cancer, these were without really major illnesses—Bell’s palsy (WTF?), shingles, a bout with sciatica that sent me twice to the emergency room, allergies and infections; a few weeks of flu and a back that acts up three or four times a decade. There’s been stupid stuff too, including a Weed-Whacker incident that led to a scratched retina, and another gardening event involving a dozen-or-so mud dauber stings. I had a motorcycle accident many years ago when I hit an eight-point stag, and when I was still drinking, I fell off a roof while playing Frisbee. Surgical procedures prior to the cancer included a hernia, a deviated septum and a shoulder fixed with arthroscopic procedures.
On Tuesday, speaking with the doctor, I was told that, after the many surgeries, I am now slightly below the cusp of the 50 percent survival rate. Could be better, could be worse, and I can still get hit by a bus tomorrow.
I'm a big believer in the right to die. In fact, I plan to have "Do Not Resuscitate" tattooed on my chest before too long and my will has a clause forbidding caretakers from taking extraordinary steps to lengthen my life. I am a proponent of a dignified exit with no interest in spending whatever I may have accumulated during a lifetime on hospital and medical care.
To me, insisting on life while striding through the gates of death is the ultimate silliness. We don't like to talk about death and dying and we don't want to face the fact that our health care system is a money-syphoning sham. As one physician put it, "No one wants to talk about what we really need: a good kick in the ass and rationing care for our terminal patients."
S.K. Jindal, a physician and author for the Indian Journal Of Medical Ethics, writes, "Technological advances in the last few decades have made us believe death is an unnatural event and that life can be prolonged at will. This has resulted in the adoption of life-supporting measures, which are sometimes antagonistic to the very dignity of life. Death is an inevitable conclusion of life. The dignity of death therefore is as important as that of life.”
I totally agree. I will not have an everyday life that involves tubes draining liquids or solids from my body. My oldest sister, who more than a decade ago died from bladder cancer and preferred life at all costs, was in constant pain and a shell of her former beautiful self by the time she passed away. I don’t want that.
This, hopefully, is mindless conjecture. The surgeries and chemotherapies may indeed make everything all right again, but bladder cancer, as it turns out, has a nasty habit of coming back time after time, and each recurrence lowers the survival rate.
After all, if we are not given a choice of when to be born, shouldn't we be given the choice of when to leave? And when is the right time to retire the vehicle that is our body?
All this being said, I have no intention of leaving anytime soon. Something happened within on Tuesday that have been striving—and failing—to fully understand. An internal switch was tripped. I remain scared and concerned, but I plan to do my best to not let this nasty disease control me anymore.
And then, early this morning, I received messages from friends with a link to a New York Times story headlined ‘FDA Approves an Immunotherapy Drug for Bladder Cancer.’ I read about Tecentriq from Roche, a drug that shows such promise the FDA approved it four months ahead of schedule. A similar drug was used on Jimmy Carter, and at 90, he went into remission and is now cancer free.
Patients are effusive about the drug’s efficacy! It shrinks tumors, and in some cases the cancer completely disappears.
I read with mounting excitement. I’m going to have to call my doctor! And why didn’t he mention this new treatment when we spoke?
Halfway through the story, I understand.
Tecentriq will cost $12,500 a month, and you have to take it for almost two years.
Ah jeez.
I’d better get that bestseller published soon.
I look back over the past few years and, aside from cancer, these were without really major illnesses—Bell’s palsy (WTF?), shingles, a bout with sciatica that sent me twice to the emergency room, allergies and infections; a few weeks of flu and a back that acts up three or four times a decade. There’s been stupid stuff too, including a Weed-Whacker incident that led to a scratched retina, and another gardening event involving a dozen-or-so mud dauber stings. I had a motorcycle accident many years ago when I hit an eight-point stag, and when I was still drinking, I fell off a roof while playing Frisbee. Surgical procedures prior to the cancer included a hernia, a deviated septum and a shoulder fixed with arthroscopic procedures.
On Tuesday, speaking with the doctor, I was told that, after the many surgeries, I am now slightly below the cusp of the 50 percent survival rate. Could be better, could be worse, and I can still get hit by a bus tomorrow.
I'm a big believer in the right to die. In fact, I plan to have "Do Not Resuscitate" tattooed on my chest before too long and my will has a clause forbidding caretakers from taking extraordinary steps to lengthen my life. I am a proponent of a dignified exit with no interest in spending whatever I may have accumulated during a lifetime on hospital and medical care.
To me, insisting on life while striding through the gates of death is the ultimate silliness. We don't like to talk about death and dying and we don't want to face the fact that our health care system is a money-syphoning sham. As one physician put it, "No one wants to talk about what we really need: a good kick in the ass and rationing care for our terminal patients."
S.K. Jindal, a physician and author for the Indian Journal Of Medical Ethics, writes, "Technological advances in the last few decades have made us believe death is an unnatural event and that life can be prolonged at will. This has resulted in the adoption of life-supporting measures, which are sometimes antagonistic to the very dignity of life. Death is an inevitable conclusion of life. The dignity of death therefore is as important as that of life.”
I totally agree. I will not have an everyday life that involves tubes draining liquids or solids from my body. My oldest sister, who more than a decade ago died from bladder cancer and preferred life at all costs, was in constant pain and a shell of her former beautiful self by the time she passed away. I don’t want that.
This, hopefully, is mindless conjecture. The surgeries and chemotherapies may indeed make everything all right again, but bladder cancer, as it turns out, has a nasty habit of coming back time after time, and each recurrence lowers the survival rate.
After all, if we are not given a choice of when to be born, shouldn't we be given the choice of when to leave? And when is the right time to retire the vehicle that is our body?
All this being said, I have no intention of leaving anytime soon. Something happened within on Tuesday that have been striving—and failing—to fully understand. An internal switch was tripped. I remain scared and concerned, but I plan to do my best to not let this nasty disease control me anymore.
And then, early this morning, I received messages from friends with a link to a New York Times story headlined ‘FDA Approves an Immunotherapy Drug for Bladder Cancer.’ I read about Tecentriq from Roche, a drug that shows such promise the FDA approved it four months ahead of schedule. A similar drug was used on Jimmy Carter, and at 90, he went into remission and is now cancer free.
Patients are effusive about the drug’s efficacy! It shrinks tumors, and in some cases the cancer completely disappears.
I read with mounting excitement. I’m going to have to call my doctor! And why didn’t he mention this new treatment when we spoke?
Halfway through the story, I understand.
Tecentriq will cost $12,500 a month, and you have to take it for almost two years.
Ah jeez.
I’d better get that bestseller published soon.
May 10, 2016
Penultimate
There is a New Nurse today, a shortish middle-aged woman wearing grey scrubs who does not seem to be happy dispensing chemo. I ask where Maggy, the regular nurse is, and the woman shrugs. “She didn’t like it here, it’s not very exciting. She transferred to surgery.”
Yes, surgery is undoubtedly more exciting. Maggy is young, recently married, and used to work in the emergency room of a major suburban hospital. I’m not surprised she’s gone but will miss her. I’ve known her quite a while, almost three years, I think, and she’s always been smiling and talkative. Her chattiness was a welcome distraction.
This is the penultimate chemo session. There’s one next week and, unless the doctor orders more, this should be it for a while. My surgeon will take a look in four or five weeks to see if I’m cancer-free and if I am, there will be three months before my next cystoscopy.
The lead-up to this session hasn’t been pleasant. I’ve been sad for the last couple of weeks, an irrational teary tristesse that has no real rhyme or reason. I’ve tried to identify its sources, and found a thousand causes, none of them offering relief.
The New Nurse takes my blood pressure. It’s astronomical. “High,” she says. I nod. Definitely high.
She asks, “First time?”
I shake my head. “Um, no. Forty-fifth. Maybe forty-sixth.”
She says, “Hm, that’s a lot.”
I agree.
She suits up. She dons gloves, a disposable paper gown, and a clear plastic visor. She is frowning and says, “I hate working with this stuff.”
I ask her why. She’s tucking her hair into one of those shower cap things. “Can’t get this stuff on you. It’s caustic to the skin.”
I tell her about earlier treatments I had that used BCG, a solution based on tubercular sheep cells.
“That stuff is even worse,” the New Nurse says. “When I first dispensed it, I had to wear a face mask along with all the other protective gear. You could do some serious harm breathing it in.”
I wonder at the wisdom of being pumped full of these chemicals. But then, I’ve learned chemotherapy is essentially hunting fruit flies with an elephant gun. The idea is to kill off the cancer cells still hiding after surgery, and make potential colonists realize this is not a good place to set up housekeeping. The downside is that a lot of healthy cells perish too.
She injects me with the required dosage of mytomycin. Normally it burns but today it’s painless. I frown, and the New Nurse asks, “Are you okay?”
I tell her I’m used to this stuff burning like hellfire and she smiles for the first time. “Hey,” she says, “I’m good. I’ve been doing this for years. Half of your discomfort comes from how smoothly the mytomycin is delivered.”
I didn’t know that.
“You’re probably going to get the standard after-effects later today, but hopefully they won’t be too bad.”
This is good news and, it turns out, it’s true. By two o’clock all I feel is a vague warmth and lethargy. No nausea, headache or dizziness.
Hallelujah.
One more treatment next week and with luck, I’ll be done.
Yes, surgery is undoubtedly more exciting. Maggy is young, recently married, and used to work in the emergency room of a major suburban hospital. I’m not surprised she’s gone but will miss her. I’ve known her quite a while, almost three years, I think, and she’s always been smiling and talkative. Her chattiness was a welcome distraction.
This is the penultimate chemo session. There’s one next week and, unless the doctor orders more, this should be it for a while. My surgeon will take a look in four or five weeks to see if I’m cancer-free and if I am, there will be three months before my next cystoscopy.
The lead-up to this session hasn’t been pleasant. I’ve been sad for the last couple of weeks, an irrational teary tristesse that has no real rhyme or reason. I’ve tried to identify its sources, and found a thousand causes, none of them offering relief.
The New Nurse takes my blood pressure. It’s astronomical. “High,” she says. I nod. Definitely high.
She asks, “First time?”
I shake my head. “Um, no. Forty-fifth. Maybe forty-sixth.”
She says, “Hm, that’s a lot.”
I agree.
She suits up. She dons gloves, a disposable paper gown, and a clear plastic visor. She is frowning and says, “I hate working with this stuff.”
I ask her why. She’s tucking her hair into one of those shower cap things. “Can’t get this stuff on you. It’s caustic to the skin.”
I tell her about earlier treatments I had that used BCG, a solution based on tubercular sheep cells.
“That stuff is even worse,” the New Nurse says. “When I first dispensed it, I had to wear a face mask along with all the other protective gear. You could do some serious harm breathing it in.”
I wonder at the wisdom of being pumped full of these chemicals. But then, I’ve learned chemotherapy is essentially hunting fruit flies with an elephant gun. The idea is to kill off the cancer cells still hiding after surgery, and make potential colonists realize this is not a good place to set up housekeeping. The downside is that a lot of healthy cells perish too.
She injects me with the required dosage of mytomycin. Normally it burns but today it’s painless. I frown, and the New Nurse asks, “Are you okay?”
I tell her I’m used to this stuff burning like hellfire and she smiles for the first time. “Hey,” she says, “I’m good. I’ve been doing this for years. Half of your discomfort comes from how smoothly the mytomycin is delivered.”
I didn’t know that.
“You’re probably going to get the standard after-effects later today, but hopefully they won’t be too bad.”
This is good news and, it turns out, it’s true. By two o’clock all I feel is a vague warmth and lethargy. No nausea, headache or dizziness.
Hallelujah.
One more treatment next week and with luck, I’ll be done.
May 8, 2016
Living Alone
I live alone—with a cat—in a small suburban house some miles from Washington, DC, where I spent many years. My home was built in the early 60s to meet the needs of returning Korean War veterans, and there are thousand such Monopoly structures dotting the Virginia landscape. Many have vanished because they were on one-third acre lots, which is precisely the size needed for the mini-mansions that were all the rage in the 90s.
I like my house, and over a decade-and-a-half I've fashioned it to meet my needs. I knocked down walls, tiled, repainted, added skylights and, in the words of a local real estate agent, pretty much made the place unsellable. There's a large bedroom upstairs converted from three smaller ones, a guest room in the basement, a study since I work from home, a room to play and record music, a yard with a small goldfish pond, a garage for the Avanti, too much lawn and just enough trees. I plant trees for people I have loved who have passed away, and my yard is now graced with an eclectic collection of corkscrew willow, bamboo, butterfly bushes and crepe myrtles. Each year I nibble away at the lawn by adding a redbud, a mimosa, or a lilac.
All the treasures and trivia from a lifetime are there, including inherited furniture, a ceramic flying pig—Pigasus, of course—that hangs from the ceiling, plants, many books and the assorted scrap and debris one amasses by living more than a half-century. Kids love the place; they strum the guitars and make clapping, whirring, or whooshing sounds with the collection of strange noise-makers; in the kitchen they ooh and ah over wind-up toys that are so old they have become new. They like the radio controlled spider in the living room, the Stuart Little sedan, and the antediluvian fossilized sharks' teeth.
Over the years, others have come to share my house for varying lengths of time but—and I have realized this only recently—the place has always remained my house, often despite my best efforts and intentions. Other folks' furniture supplanted mine briefly but departed when the guests did, save here and there for a surviving table and chairs, an old leather sofa, and a framed print in the downstairs bathroom.
I don't know anyone else who owns and lives alone in a house. My friend Anne did, but she died a few weeks ago and her house is already up for sale. There was an English professor in Richmond, but her place was an unbelievable sty. Mine is not. My situation means, basically, that the level of neatness or dishevelment, the number of dust bunnies, hairballs and tracked-in leaves and dirt, all are mine to control. I could (but wouldn't think of it) let the dishes accumulate in the sink, forego laundry, leave the grass untrimmed, and not collect the mail. Instead, I have developed a strange and unsettling fastidiousness, an old-mannish need for clean floors, for things in their places. I do laundry too often, vacuum the kitchen floor at least once a day, and pay my bills early. I don't yet fold my underwear but sense this may be coming.
My house and I have been the object of both envy and pity. “You live alone? What a shame! Don't you get lonely?” Yes, I do, quite often. Sundays are hard. There are times when cooking for one is cheerless. Or, “You can do what you want, when you want! You're so fortunate!” That too. I am, as Seinfeld would say, master of my domain, fortunate beyond words to have purchased when I did. I couldn't afford my house now.
The downside of owning a home, particularly in one of the richest areas of the country, is that it ends up becoming stupidly expensive, and that the expenses are constant. There is a steady stream of needs small and large, from a new heating system last fall to mulch in the spring. There are taxes, leaky toilets, clogged sinks, squirrels in the attic, and a twenty-year-old washing machine that is beginning to sound like a rock tumbler. And I am running out of money.
I’m not sure what the future will bring. I would like to hang on for as long as I can, hoping for a best-seller, a deal with HBO or Cinemax, though I will settle for selling a series to Spike. I don’t want to leave; I really don’t. As a long-dead Roman—maybe Cicero—once said, “What is more agreeable than one's home?”
I like my house, and over a decade-and-a-half I've fashioned it to meet my needs. I knocked down walls, tiled, repainted, added skylights and, in the words of a local real estate agent, pretty much made the place unsellable. There's a large bedroom upstairs converted from three smaller ones, a guest room in the basement, a study since I work from home, a room to play and record music, a yard with a small goldfish pond, a garage for the Avanti, too much lawn and just enough trees. I plant trees for people I have loved who have passed away, and my yard is now graced with an eclectic collection of corkscrew willow, bamboo, butterfly bushes and crepe myrtles. Each year I nibble away at the lawn by adding a redbud, a mimosa, or a lilac.
All the treasures and trivia from a lifetime are there, including inherited furniture, a ceramic flying pig—Pigasus, of course—that hangs from the ceiling, plants, many books and the assorted scrap and debris one amasses by living more than a half-century. Kids love the place; they strum the guitars and make clapping, whirring, or whooshing sounds with the collection of strange noise-makers; in the kitchen they ooh and ah over wind-up toys that are so old they have become new. They like the radio controlled spider in the living room, the Stuart Little sedan, and the antediluvian fossilized sharks' teeth.
Over the years, others have come to share my house for varying lengths of time but—and I have realized this only recently—the place has always remained my house, often despite my best efforts and intentions. Other folks' furniture supplanted mine briefly but departed when the guests did, save here and there for a surviving table and chairs, an old leather sofa, and a framed print in the downstairs bathroom.
I don't know anyone else who owns and lives alone in a house. My friend Anne did, but she died a few weeks ago and her house is already up for sale. There was an English professor in Richmond, but her place was an unbelievable sty. Mine is not. My situation means, basically, that the level of neatness or dishevelment, the number of dust bunnies, hairballs and tracked-in leaves and dirt, all are mine to control. I could (but wouldn't think of it) let the dishes accumulate in the sink, forego laundry, leave the grass untrimmed, and not collect the mail. Instead, I have developed a strange and unsettling fastidiousness, an old-mannish need for clean floors, for things in their places. I do laundry too often, vacuum the kitchen floor at least once a day, and pay my bills early. I don't yet fold my underwear but sense this may be coming.
My house and I have been the object of both envy and pity. “You live alone? What a shame! Don't you get lonely?” Yes, I do, quite often. Sundays are hard. There are times when cooking for one is cheerless. Or, “You can do what you want, when you want! You're so fortunate!” That too. I am, as Seinfeld would say, master of my domain, fortunate beyond words to have purchased when I did. I couldn't afford my house now.
The downside of owning a home, particularly in one of the richest areas of the country, is that it ends up becoming stupidly expensive, and that the expenses are constant. There is a steady stream of needs small and large, from a new heating system last fall to mulch in the spring. There are taxes, leaky toilets, clogged sinks, squirrels in the attic, and a twenty-year-old washing machine that is beginning to sound like a rock tumbler. And I am running out of money.
I’m not sure what the future will bring. I would like to hang on for as long as I can, hoping for a best-seller, a deal with HBO or Cinemax, though I will settle for selling a series to Spike. I don’t want to leave; I really don’t. As a long-dead Roman—maybe Cicero—once said, “What is more agreeable than one's home?”
May 6, 2016
Maman
I’ll say it out loud: I miss my mother.
Actually, I miss both parents. They’ve been gone a relatively long time, but there are still moments when their absence is palpable.
Sunday is Mothers’ Day, a celebration that can be traced to pagan times, when women mourned the fallen soldiers who were their sons, husbands and brothers. In the United States, President Woodrow Wilson decreed in 1914 that the second Sunday in May would be set aside to honor all mothers, and a commercial frenzy followed. The day now cannot be feted without cards, candy, flowers, and Sunday brunches, a full panoply of doubtful events punctuated by five-dollar sentiments from Hallmark.
My mother died March 10, 1992, in Paris. She passed away of liver cancer at the American Hospital in Neuilly, the very place where she’d given me birth some four decades earlier. She was stalwart and, I learned later, never told her husband—my father—the true extent of her illness. When she died, his incipient Alzheimer’s took an immediate turn for the worse. He couldn’t believe she was gone. He searched their apartment on the Rue Lamartine and when he couldn’t find her, sought her in the streets, persuaded she had gone to the boulangerie, or the epicerie as she did almost daily.
My mother was an amazing and impossible woman. She drank in moderation but used far too many prescription drugs. I suspect she was prey to the panic attacks that occasionally lay me low, and I remember a rare moment when she displayed how terrified she was of being alone.
I was traveling on business and had managed a layover in Paris. When I got to their home, I discovered my father had left their apartment in the morning to do what he often did, wandering the streets of his favorite city in search of undiscovered nooks and crannies.
When he didn’t come home by lunchtime, my mother panicked and called the police. When he had not returned by three, she decided he was dead. The following hours were ones of desperation during which she resisted any attempt at logic or consolation. It was the only time I ever saw her fall apart.
When my father eventually came back in the later afternoon, having no idea of the drama he’d caused, my mother slapped him once hard, then fled to the bathroom and consumed enough Xanax to sleep for a full day. My father rubbed his cheek, asked me what had happened, and when he understood, attempted to console her. It didn’t work. She was asleep and unresponsive, which in turn panicked him. It was an odd, unsettling couple of days.
After my mom died, I bought a weeping willow tree and planted it in my back yard. It was small when I first dug a hole for it—less than six feet tall, a thin sapling almost leafless and scrawny. Over the years, it grew and towered over the rest of the landscape. It overlooked a small pond I had put in earlier, and provided shade. Birds built many nests. It became the favored haunt of a large woodpecker whose staccato tapping marked the hours of the day. The willow’s waterfall branches almost reached the ground. For years, my mom’s tree was the highlight of my back yard.
Then one day something happened. It was a windless day; I was in my living room and from the window saw the tree list, hesitate, and crash to the ground. The top of it fell within inches of my garage roof, and the trunk missed everything of importance—other trees, bushes, a bench, a small table and a couple of chairs.
Over the next few days I trimmed the tree’s branches but left the trunk where it lay; it bisected my back yard in an elegant sort of way. Years passed; the trunk slowly disintegrated and in 2009, I gathered what was left and in a small, personal ceremony, scattered bark and rotting wood beyond my back fence.
For a couple of years, the grass didn’t grow where the tree trunk had lain, but now all traces of the willow are gone save for a small mound where the tree stood. I planted perennials there that come out in June.
I miss my mom.
Actually, I miss both parents. They’ve been gone a relatively long time, but there are still moments when their absence is palpable.
Sunday is Mothers’ Day, a celebration that can be traced to pagan times, when women mourned the fallen soldiers who were their sons, husbands and brothers. In the United States, President Woodrow Wilson decreed in 1914 that the second Sunday in May would be set aside to honor all mothers, and a commercial frenzy followed. The day now cannot be feted without cards, candy, flowers, and Sunday brunches, a full panoply of doubtful events punctuated by five-dollar sentiments from Hallmark.
My mother died March 10, 1992, in Paris. She passed away of liver cancer at the American Hospital in Neuilly, the very place where she’d given me birth some four decades earlier. She was stalwart and, I learned later, never told her husband—my father—the true extent of her illness. When she died, his incipient Alzheimer’s took an immediate turn for the worse. He couldn’t believe she was gone. He searched their apartment on the Rue Lamartine and when he couldn’t find her, sought her in the streets, persuaded she had gone to the boulangerie, or the epicerie as she did almost daily.
My mother was an amazing and impossible woman. She drank in moderation but used far too many prescription drugs. I suspect she was prey to the panic attacks that occasionally lay me low, and I remember a rare moment when she displayed how terrified she was of being alone.
I was traveling on business and had managed a layover in Paris. When I got to their home, I discovered my father had left their apartment in the morning to do what he often did, wandering the streets of his favorite city in search of undiscovered nooks and crannies.
When he didn’t come home by lunchtime, my mother panicked and called the police. When he had not returned by three, she decided he was dead. The following hours were ones of desperation during which she resisted any attempt at logic or consolation. It was the only time I ever saw her fall apart.
When my father eventually came back in the later afternoon, having no idea of the drama he’d caused, my mother slapped him once hard, then fled to the bathroom and consumed enough Xanax to sleep for a full day. My father rubbed his cheek, asked me what had happened, and when he understood, attempted to console her. It didn’t work. She was asleep and unresponsive, which in turn panicked him. It was an odd, unsettling couple of days.
After my mom died, I bought a weeping willow tree and planted it in my back yard. It was small when I first dug a hole for it—less than six feet tall, a thin sapling almost leafless and scrawny. Over the years, it grew and towered over the rest of the landscape. It overlooked a small pond I had put in earlier, and provided shade. Birds built many nests. It became the favored haunt of a large woodpecker whose staccato tapping marked the hours of the day. The willow’s waterfall branches almost reached the ground. For years, my mom’s tree was the highlight of my back yard.
Then one day something happened. It was a windless day; I was in my living room and from the window saw the tree list, hesitate, and crash to the ground. The top of it fell within inches of my garage roof, and the trunk missed everything of importance—other trees, bushes, a bench, a small table and a couple of chairs.
Over the next few days I trimmed the tree’s branches but left the trunk where it lay; it bisected my back yard in an elegant sort of way. Years passed; the trunk slowly disintegrated and in 2009, I gathered what was left and in a small, personal ceremony, scattered bark and rotting wood beyond my back fence.
For a couple of years, the grass didn’t grow where the tree trunk had lain, but now all traces of the willow are gone save for a small mound where the tree stood. I planted perennials there that come out in June.
I miss my mom.
