Lost and Found Connections, Paris and St. Paul, 2001
Day-to-day events and lives often seem isolated. In February and March of 2001, Thomas Paine, my wife’s new job with Northwest Airlines, our families’ genes and histories, e-coli bacteria, 17th century prostitutes, cuisine of the Seychelles Islands, a left carotid artery, socialized medicine, Louis XIV, a B-17 bomber’s lay-over in Labrador, madness, Chinese hamster ovaries, gunpowder, a gangster, wool berets and Captain Nemo's Nautilus, all came together during a trip like no other. Truth is stranger than fiction, more frightening than nightmares and so much more rewarding than a lottery.
Part 1 Two Hours in Paris
We could each turn around in the space beside our bed, but not if holding suitcases. Northwest Airlines' first class reclining seats had more wiggle room than Hotel Claude Bernard's second floor room on Rue des Ecoles on Paris’ Left Bank.
I shot some black and white photos of the street scene and neighboring buildings while Karen washed up and unpacked. My first time in Europe, a free flight thanks to Karen's new airline job, this was an unscripted long weekend escape.
Paris had not been a romantic, historical nor cultural icon for me. Yet looking out the window, even with gray skies, I liked the prospect. Buildings on a human scale four stories, maybe six. Not a Gap nor a McDonalds in sight. Wrought iron balconies, fenestrations on roof edges showed more craft than design.
I was beginning to recall some 30-year-old high school French. And thought back on Amabile LeDuc an ancestor who may have come across the QuebecVermont border under a load of hay in the early 19th century. Our forebears might have been in Paris two hundred years ago . . . . There seemed a chance that this would be something more than a brief escape from Minnesota's cold February.
While Karen unpacked her bag, I angled a few more photos through the window, framing other buildings through balcony rails.
"Shall we go see the Musee Cluny and find something to eat?" It was one or two p.m. "Sure."
Karen stood at the head of the bed and counted out franc notes we had gotten from a cash machine at Charles DeGaulle Airport an hour earlier. I checked my pockets and returned the camera to its case.
Francs dropped from Karen's right hand her eyes followed their fall and registered surprise. "What are you doing?" I asked. A second later she collapsed. I grabbed her and eased her onto the bed. "What's going on?" Dead weight. Had she passed out? Too long in transit? Overtired?
But her eyes were open and she responded with slurred nonsense. "Are you all right?" Her eyes were now strangely uncommunicative no surprise, no fear, no pain. Her breathing was steady. Her skin was not clammy.
Some kind of fainting spell, I told myself. "Are you all right?" More slurred blahduhblahs. I shifted her to lengthwise on the bed. "Do you want something to drink?" No answer.
Minutes passed, no change. "You're freaking me out! I am going to call a doctor."
"Bonjour, this is room 207, we need a doctor!" Front desk responded: "You need a doctor?" "Yes, right away! Thank you."
As minute piled on top of minute and Karen's responses diminished, the thought "stroke" surfaced. "Can you move your hand?" "OK. Now the right one." Nothing.
Stroke?
"This is room 207, is a doctor coming?" "Oui, I am calling now." "Forget the doctor, call an ambulance." "An ambulance?" "Oui!"
More time passes. "Karen, I am going to the front desk, I'll be right back."
The darkhaired clerk had a phone book on the desk and was calling number after number after number. He had written down and crossed off a long list already.
"Hurry, please, I'm really afraid!"
I hurried back upstairs.
No change. I pulled out the 25yearold paperback French/English dictionary. "Stroke: Coup de sang." Coup = a blow, sang = blood?
Still more time. "Hang in there Karen, I love you!"
I rushed back down the enclosed narrow spiral stairs. Still more calls. Two employees now stood at the desk with worried looks on their faces. "Je pense un coup de sang." (I think a stroke.) "I want to bring her down here."
I ran back up the stairs. The tiny elevator barely held two people standing upright; it would not work for this. I halfdragged, halfcarried Karen on my back to the head of the stairs. A second staff member squeezed past me and grabbed her legs. Awkwardly and with a few bumps, losing a shoe, we brought her to the small foyer and sprawled her into an easy chair facing the front door. Guests looked on curiously and went on their way.
Phone calls, still more phone calls. "A hospital! We have to get her to a hospital! Coup de sang, understand?"
"Oui." "Do you have a car that you can drive her? It has been 40 minutes!" "Non, no car."
"OK, let's get a taxi!" I ran outside to the street and signaled a taxi over: "Un minute, s'il vous plait." We hauled Karen out to the taxi, but the driver backed off and said: "Non!" I heard the hotel man say something like: "Elle morte . . .” To my fear-filled ears: "She'll die." The driver pulled the door shut and sped off.
More and more minutes bleed by until finally a crew in white coverall-uniforms and the legend ASAMU” arrived with emergency medical equipment. A 30 year old woman began her examination of Karen. I said: "coup de sang" and answered her lightly accented questions in English: what had happened, Karen’s prior medical condition, medications, etc. She listened with a stethoscope and hooked up an oxygen mask. She looked into Karen's eyes and sought her response to questions. Conscious, but less so now, it was evident that she had lost control over the whole right side of her body. More and more and more time passed.
The doctor pulled out a cell phone and said: "I think your wife has had a stroke. I will call now to find a hospital to take her."
Find a hospital! "Can't you just take her to an emergency room?" "No, we must find a neurologist who will agree to care for her."
Ohhh, gawd . . . more delay! More time!
A return call, "Oui, oui."
The doctor wrote out: “Service de Professeur Rancurel, Hopital PitieSalpetriere.” "It is a very good hospital. A taxi will help you find it." "Wait! Can't I go with you?" "Non." And the uniformed men placed her on a folding gurney, wheeled her out the door into the rear of a small ambulance.
Left behind, I locked the hotel room, grabbed my wallet and the fallen francs and hailed a taxi. At least he knew the name “Pitie-Salpetriere” when I showed him the slip of paper written out by the doctor. “Combiens de temps?” “Dix minutes. How long? Ten minutes. A lifetime.
I learned later that in a medical emergency in Paris we should have immediately called the SAMU (Service d'Aide Médicale Urgente), tel. #: 15. In France "ambulance" apparently means non-emergency medical transport, it does not mean “911.”
Coup de Sang
Mumbo jumbo fumbled francs open eyes and all these questions with no answers.
Bent back bumping down curved narrow hotel stairs, into the street and back.
Was it just one hour of anguish til life and love and past and present and future were
whisked away by uniforms, gloves and confusion?
Then I ran alone through grey and unknown streets
Alone through Louis’ ancient gates
Alone round Babinski’s new block of science
Alone through Hopital Salpetriere
In search of now,
In search of future,
The unbearable,
The unimaginable,
The unknowable.
Part 2 Destination
The cab dropped me at the hospital’s central entrance where I waited in line to speak to a staff person. She did not know where to find Pr. Rancurel but another person knew where the neurology unit was. Oral directions in French took me outside and down one street. Is this the building? No. There are so few signs. Block after block of buildings.
There was almost no one outside on the drizzly afternoon. A man exited a building, looked at my slip of paper from the hotel and redirected me further down the street and then to turn left down the hill, and another left, or was it a right? Near the Pavilion Babinski? Whatever. . . . I was off, halfwalking, halfrunning, trying not to think the worst.
There, Babinski Pavilion . . . neurology . . . the Babinski reflex occurs when someone lightly scratches the bottom of your foot. It's the newest building in sight, bright shiny grey, not yet finished, largely deserted. I entered the laboratory area and got more directions . . . almost there.
Across the street, through an archway a five-story neurology center; third floor, finally the service de Pr. Rancurel. There is no information desk, limited signage. On a third floor door, I saw the name and barged into an office with my stammered French. It was Doctor Rancurel himself with his secretary. Affronted at my interruption, he directed me down the hall to find someone who had heard of Madame Covington.
Finally.
She is at a lab having tests; I must get her registered so they can get a bar code for her tests and her file. A bar code! Where? Back near where I started. So back down the stairs, through archways and the clouds and drizzle and into a quiet registration office in an old stone building.
I hurry back and authorize Dr. Sophie Crozier to administer tPA, a clot busting drug, which should be given no more than three hours after the onset of a stroke. I've read about tPA - a new wonder drug. "Yes, go ahead." Has it been three hours? Maybe more.....
Karen lies in a critical care room with three other seriously ill patients. She is hooked up with tubes and is not responsive. Sedated? The tPA is fed into the tube, but we won't know for hours whether it makes any difference. Death? Life? Now? Forever?
Pt. 3 L'Hopital de la Pitie Salpetriere
L’Hopital Pitie Salpetriere is in the not-so-glamorous 13th arrondissement of Paris, a couple of kilometers from the tourist and student dominated area near Notre Dame and the Sorbonne where Karen and I had reserved our hotel room. Situated on Boulevard de l’Hopital, the massive collection of buildings spreads out over 32 hectares or 80 acres. It borders Gare d'Austerlitz, one of Paris' main train stations and is a few blocks from the Seine. In 18th century paintings of Paris at the Carnavalet Museum of the History of Paris, the dome of the hospital's Chapelle St. Louis is visible. In those renderings, the hospital grounds extended to the River Seine, but now the station and tracks cut it off.
In the late 1600s, Louis XIV, the Sun King, shut down a gunpowder factory located here. The king's armament makers used salt peter (sal petriere) to make gunpowder, with industrial accidents making for tragic consequences for neighbors. Grandson of a Medici, 1/4 French, crowned when still a child of four, a man of grand ambitions, Louis expanded colonies around the world and engaged in a lifelong series of intrigues and wars with and against his Spanish, English, German and lowcountry neighbors.
In 1656 the King began the Hopital Generalle, a system of public hospitals and social care institutions, and at Salpetriere, an almshouse to "care" for poor women. The goal, according to the King’s decree of April 27, 1656, was “to put an end to beggary and idleness, as being the source of all disorder . . . and (create a place where) all the poor would be gathered on clean premises, so as to be tended to, be educated and be given an occupation.” It later expanded to take in the insane, vagabonds, and female criminals of all kinds.
When the Duc de La Rochefoucauld visited some years later:
Everything is in a state of neglect to a degree as inconceivable as it is distressing. All categories of madness are confounded; chainedup mad women (and there are many of them) are united with peaceful ones. The latter have to put up permanently with the horrific spectacle of the contortions and fury of their enraged inmates, which they accompany with perpetual screams, and never enjoy a moment of rest. . . . Here there is no gentleness, no consolation, no remedy.
The women-only population of Salpetriere at the time may have been as high as 10,000 out of a total Paris population of 400,000. http://www.paris.org/Kiosque/sep98/la.salpetriere.htm
Salpetriere’s long narrow buildings were designed by the finest architects of the day: Le Vau (designer of the Louvre, Versailles, and Vincennes), Le Muet, and Liberal Bruant. These are constructed of yellow brown limestone and named after patrons, including Mazarin, the King's Italian-born and much-hated minister of finance. The first chaplain at the Hopital was the most famous churchman of the 17th century, later canonized as Saint Vincent De Paul.
Many of the buildings from the late 1600's are still in use at Salpetriere. One long building was in the middle of a rebuilding project that would maintain the exterior features while modernizing the interior. Three and four stories tall, these buildings have narrow rooms on each side of a long central hall, with huge windows in each room. Three hundred years ago, sunlight was the prime source of illumination . . . Picture a nurse comforting a victim of consumption in the morning light and Vincent de Paul, saying last rites and drawing shades closed in the early evening.
An old single story building, "Petit Loges" (small lodges), runs the length of the rear of the neurology clinic. Iron and wood benches are anchored outside a long line of closely-spaced doors under a veranda overhang. Louis' gendarmes and press gangs brought beggars, prostitutes, vagrants, drunks and other female “criminals” to Petit Loges. The ironwork on the benches was constructed so that the prisoners could be chained to the bench outside to partake in fresh air and sunshine. Petit Loges was later the site of a massacre by a revolutionary mob in 1793 that indulged itself in drink rather than liberation. https://upload.wikimedia.org/wikipedia/commons/7/73/Les_Petites_Loges_-_h%C3%B4pital_de_la_Salp%C3%AAtri%C3%A8re.jpg.
At the turn of the 17th and in the 18th century, these women, orphans and others were offered the “choice” of emigration to Quebec or the Indies or Louisiana, where they became brides for the soldiers, trappers and traders in Nouvelle France. Were some of our ancestors, among them, Les Filles de Roi? A novelized life of one very early ancestor, Antoine Leduc, reports that to be the case
The Chapelle de St. Louis was constructed in the early days of l'Hopital. Liberal Bruant, the architect of Les Invalides, the monumental building constructed for Louis’ disabled war veterans, was given the commission for this chapel in 1669. It is named for the Louis XIV’s sainted ancestor, St. Louis. Cruciform and constructed of the same limestone blocks as other buildings; its main feature is a massive central dome and four naves that originally segregated women, boys, girls and men into separate worship spaces.
The Chapelle was abandoned in the 19th century; in the late 1960's volunteers began a rehabilitation program that is still far from complete. Roof repairs and restoration of several stained glass windows are witness to the slow progress of volunteer hand labor rather than institutional support. Two of the four naves are now used for services and performances.
A string trio played a free concert of music by Kodaly and Beethoven the day before I left Paris. I sat on a simple wooden folding chair among an audience of fifty and took in the sweet sounds and their soft echoes off the cold stone walls. Upon our return to St. Paul, our friends and family sent a sizeable donation for the Les Amis de la Chapelle, a group that is working for restoration and public use of the Chapelle. We inquired about how we might through a donation give honor and thanks to the hospital staff and found the concept a foreign one there. I arrived at this idea and I hope that regular sight of the Chapelle might remind the staff of l’Hopital of our immense appreciation for their expert work.
In the 19th century, two French physicians, Pinel and Charcot, began scientific investigation of the brain and founded the studies of neurology and psychiatry on the grounds of Salpetriere. Common wisdom among both physicians and lay people had been that people with epilepsy were inhabited by devils. What worse demons infected the “mad?” Pinel freed from bondage those who responded to his enlightened treatment and began keeping records of their treatment. Under his humane leadership, in just two years the annual death rate of inmates declined from 60% to 10%. A 15-foot statue of Pinel, "amis des alienes" or friend of madmen, greeted me when I walked up to Salpetriere’s great stone gate house each day. At the time I misapprehended “alienes” - thought he welcomed me, a foreign visitor. Well, he and others welcomed me, mad or alien.
A plaque near the entrance to the neurology clinic pays a tribute to Charcot. The plaque’s reproduction painting shows Dr. Charcot lecturing to doctors while holding a young woman he believed to be suffering from "hysteroepilepsy." The only people in the painting who show any personal concern for the woman, rather than cold curiosity, are the female nurse and Dr. Babinski. The original hangs in the Vienna office of Sigmund Freud - who studied at Salpetriere under Charcot. Http://www.uaf.edu/english/faculty/reilly/NCHCproject/Charcot.htm
Charcot is today particularly remembered by students of heredity, hypnotism and hysteria. One unfortunate outcome of his studies in a Salpetriere ward that mixed people with epilepsy and those with mental illness was that those with mentally illness learned that they would get staff attention if they imitated the seizures of those with epilepsy.
A Russian’s report on the Charcot's 1888 lectures showed him to be most callous in his treatment of patients and numbered staff and patients at Salpetriere at around 6000. www.joanspicci.com/kovalevskaia/svk__article__la_salpetrie.htm Later, under pressure from Dr. Babinski and others, Charcot separated the mentally ill from those with true seizures, began talk therapy and saw a subsidence of the induced epilepsy. Among Charcot’s students at Salpetriere were William James, Georges Edouard Gilles de la Tourette (18551909), whose studies of nervous system tics started our understanding of the syndrome bearing his name, and Alfred Binet, a pioneer in attempts to test for intelligence (the Stanford-Binet IQ test.)
The hospital has kept its public mission through four centuries. In modern times, it merged with L’Hopital Pitie, another historic public institution. The Hopital now totals about two thousand hospital beds and employs eight thousand people in seventy "services" or clinics.
The 1960's era Paul Castaigne neurology building's Salle Roussy (Roussy wing) where Karen was treated is strictly utilitarian. The walls had not been painted for some time; almost all of the beds are adjusted manually with cranks and levers. Beds are close together and privacy is limited. Down one floor and in another wing of the same building, another clinic has more modern decor and furnishings. But the central landings and wide stairwells share a shabby ambiance punctuated by battered couches and chairs clustered around seldomemptied ashtrays. Patients, visitors, staff and an occasional homeless person hang out there and smoke or buy drinks and food from the ground floor vending machines.
Part 4 Coup De Sang Stroke
Coup de sang “a blow to the blood." The carotid artery is a main vessel that runs through the neck and bathes the brain with oxygen rich blood pumped up from the lungs. On February 8, 2001, a dissection or split developed in the lining of Karen's left carotid artery. A clot or perhaps a tiny piece of artery was swept upwards until the artery narrowed and stopped further travel. There the clot lodged and blocked the flow to a portion of the left side of the middle cerebrum. Brain cells immediately began to die; the dying brain cells created chemical reactions that further damaged surrounding brain cells. In stroke circles there is a saying: “time is brain.”
In CT scans and MRIs taken that afternoon and in subsequent days, the damaged area in Karen’s brain is easily visible to even an untrained eye. Dr. Michael Obadia confirmed: "It is a very big stroke."
The loss of oxygen to that portion of the left side of Karen's brain killed the brain’s control over the whole of the right side of her body. There was not the slightest movement of toes, ankle, leg, fingers, hand, elbow or arm. Her right lip drooped downwards. Right side mouth muscles no longer had nerves wired to an active portion of the brain. Yet, there was no loss of sensation.
When speech returned, we heard slurring and a rough, halting and slow cadence. Later we found a trace of transitory apraxia loss or mixing up of words: "give me my gate" instead of "give me my cane." "Buy a note taker” rather than "buy a notebook." Cognition was affected. But her attitude and spirit were and are better than could be dreamed of - life continued with humor, acceptance, determination and not yet even three hours of depression. Was there some simultaneous beneficial impact on an emotional center in the brain?
Karen did not have classic stroke etiology no high blood pressure and for decades, no smoking nor birth control pills. She had had no chiropractic neck manipulation or any injury. While some theorize a connection between strokes and long flights in airline coach seats where passengers cannot move their legs, we flew in first class luxury. The "coach stroke" idea hypothesizes that blood clots form in the immobile legs, move up to the heart or head and cause strokes. Not this stroke.
Some studies see hints of links between autoimmune and connective tissue disorders and carotid dissection strokes. Karen, one sister and their mother have had autoimmune related health problems. Her father had an aortic dissection, a split in the artery feeding the heart, perhaps another genetic link?
Unlike other types of stroke, once the carotid dissection is healed, this disaster is not likely to recur.
Part 5 Making Dread Contact
There is a pay phone in the stairwell. I bought a phone card at the Babinski newsstand. (Simply insert in slot and dial number no PIN number punching in these modern French phones.) Did I first leave a message for Deborah at work, our friend who was staying with Matthew and Sara? I must have, because I first reached Karen's sister Luanne and Deborah called her and was patched in as I started to tell Luanne what had happened.
“Karen had a severe stroke and is in intensive care here.”
Luanne: "Oh no! I can't take any more of this . . .”
Their Dad had passed away just a month before. But Luanne pulled back and I told them what I knew. "There is no prognosis now. No, we don't know why."
I asked them to let the rest of the family know of this calamity, to contact our offices and to tell them why there would be some delay in our return.
Deborah arranged to collect Matthew, a high school freshman, and Sara, a senior, at home at the end of the school day. Sara thought she was in real trouble, but did not have any idea why. Had she mistreated her brother? Was it about the car?
Deborah explained that their Mom had had a stroke and what it was. I can only imagine that terrible scene.
I later had my first telephone call with them a heartache and fear-filled experience. I could only tell them to hope for the best and that I would give Karen their love.
There was nothing I could do that night I sat with Karen well past visiting hours and watched the workings of the critical care unit. Karen was still as were the other three patients. One older gray man looked, well, almost dead. And he died a day or two later. Karen, except for her stillness, the IV tubes and hospital surroundings, looked healthy. Yet I did not ask. I feared the answer. Would she live or die?
I must have taken the subway back to the hotel. I lay down alone. I tried to sleep. I thought the unthinkable. “What would life be without Karen?” "What if I had called sooner?” “Could I have gotten her to the hospital 20 or 40 minutes sooner?"
I cried out in anguish.
Did I sleep before my parents called at 3:00 a.m.? Probably not. They could do little more than send their sympathies and prayers.
Sleep at last, only to wake with a start and look at the watch. Already eight a.m. I showered quickly and wolfed down the hotel's included petit dejeuner. Off to the subway and then through the grounds of Salpetriere to Karen's bedside.
Part 6 Assessment and Treatment
Roughly a quarter of people with a stroke, “brain attack” or cerebral vascular accidents recover with no lasting effects. Almost a quarter die within three months. Half survive with some disability.
Was it this first day that Karen was out for more tests? And later then when her doctor and I worked to assess her capacities? I think so. She fought hard to answer the simplest questions: "What is your daughter's name?" "Sssarwa....." She understands! She answers!
"Can you see from both eyes?" A nodded yes. But Dr. Crozier was unsure until she covered one eye and then the other. Sometimes a stroke will leave a person with the impression of sight in both eyes but in truth, only one. "It’s OK both are working."
As the first days passed, every sound, every word, every phrase was pushed out with a visible physical struggle.
She repeated something again and again with growing frustration. We could not understand. She then motioned for a pencil and paper and wrote: "Je voudrais brosser mes dentes." She wrote in French that she wanted to brush her teeth!
She struggled these first days to communicate her computer passwords to me so that coworkers could submit a report that was due to her supervisor. These wonders told me that her mind was going to be all right. Karen remembered to remind the kids of dental appointments and to cancel an appointment with her hair dresser - telling me those phone numbers from memory.
But many language connections needed rebuilding. She wrote on Feb. 10: "I have cane use then in the rest into the renunt is the rest suchiscas ys the is the"
On the 11th: "Another do the watch time the?"
On the 12th: "speelch therappasts", "should about the tix is gone by" "pills thyroid more in the more in the extra".
Karen's angled printing on early postcards to family showed love and the struggles she faced:
Dear Asas ("Aras" is a nickname, jw): I hope you're doing OK now! But it can be hard to talk to me and gett the gabled gook! Jay and I both of you with this kitty (on the postcard, jw) especially the special folds of her unique colors! Love, Karen
Acute treatment for stroke changed about five years ago with the beginning of the use of clot-dissolving drug, tPA (tissue plasminogen activator.) TPA is a genetically engineered copy of a natural human protein. The amount produced in the human body is minute. Genetically engineered tPA is made by introducing the human gene that codes for tPA production into Chinese hamster ovary cells. These cells are "programmed" to produce large quantities of the drug. The tPA can dissolve clots around the heart or in the brain and restore blood flow. Side effects include a risk of hemorrhage. We know about tPA because my brother Philip, a chemical engineer, worked to convert bioreactors that had brewed tPA into bioreactors that now brew interferon, after his client lost a patent lawsuit.
Karen's injection came toward the end of the optimal threehour window and evidently made no difference. Had it come sooner, would it have changed anything by allowing blood to again flow into the damaged portion of the brain? We can't know.
Dr. Obadia pulled films that first or second night and showed me the damage. The scans showed the little defect in the left carotid, and the squiggly progress of both left and right arteries up into the brain. On the left side, a branch of the middle cerebral artery suddenly ended and a spot darkened a large area where loss of blood and oxygen killed a portion of Karen’s brain.
These scans and subsequent films of CT scans, EEGs, MRIs, and Doppler/ultrasound studies came back to St. Paul in a big envelope. Our friend Dick, who had run nuclear medicine technology in local hospitals for twenty years, looked at them with a neurologist at Regions Hospital. They marveled at the sharp detail achieved: "They must have some techniques we don't know yet!"
Karen's treatment may be a part of a study of these special techniques diffusion weighted MRI and MR angiography in combination with thrombolysis (clot-busting with tPA.) We read an abstract of a presentation by Dr. Crozier and her team at the 7th International Symposium on Thrombolysis and Acute Stroke Therapy, Lyons, France, May, 2002. www.thrombolysisacutestroketherapy.org/abstract/ The middle cerebral arteries were at least partially reopened after use of tPA in 25 of the 41 patients studied during this period that included Karen’s treatment. But not Karen's artery.
Karen was hooked up with intravenous drips: glucose, vitamins, blood pressure controls, heparin (a blood thinner to reduce further clot formation), Prozac, pain relievers and a sedative. These were aimed mainly at making sure that no further damage was done, allowing the damaged artery to heal. Once the brain is damaged like that, however, there is no medical intervention that can repair the loss.
Philip’s stroke-related biomedical expertise extends beyond tPA. Treatment in Minnesota includes "Botox.” This wonder drug starts as a fermentation of ecoli bacteria and ends up as a much diluted strain of the deadly botulism toxin. Philip worked in designing the process for manufacture of Botox. In six months the 25-gallon stainless steel cooker would make the owner enough product for two years of the world's needs, or so they thought. They were wrong, as plastic surgeons are now using the stuff to smooth out rich ladies' frown lines and crows' feet to reap great profits and minuscule increases in beauty.
Botox injections costing six thousand dollars every other month (circa 2010) are used to relax the contractures of Karen's hand and shoulder muscles. Paralysis prevents normal movements but the muscles contract with lack of use and cause pain and hence further decreases the movement in her fingers, hand, arm and shoulder. Botox works by blocking nerve endings that receive and react to a chemical neurotransmitter that cause the muscles to contract. Too much Botox will, presumably, like the botulism it is, paralyze one’s lungs or heart.
Part 7 - More Important than Money: Relationships
What goes around comes around, not as karma or anything “other worldly.” But when we work hard, build relationships and have committed friends and family, great things can happen.
For many years, I have believed that there is no heaven nor hell, except what reality we leave behind for our children. But now, I know heaven and hell are also the everyday consequences of what we make of our lives. There is no St. Peter nor a Lucifer at any of the gates we pass through in life - the gate keepers are each of us . . . and all of us. Karen and I must have opened a few doors for others because so many were opened for us in those four weeks.
Deborah, who had planned a weekend at our home with Sara and Matthew, settled in with our kids for the long haul. Gus, her new puppy, found a home with his neighbors.
Karen's best friends Emily and Deborah sparred over who would get on the next plane to Paris. Because the kids were used to spending time with Deborah and her home is a mile from ours, Deborah lost out. Emily arrived at Salpetriere by cab on day three of our ordeal. She came so quickly that Karen's colleagues at NWA had no time to arrange free transport but Emily's travel agent friend in NYC found a bargain fare for her. NWA later arranged for free transport from the Bay Area to France and back for my brother. Karen’s co-workers of just eight months later donated thousands of dollars of their sick pay to her.
Emily and I shared a hotel room, long walks, Notre Dame, The Cluny Museum of the Middle Ages, meals, laughter, The Louvre and hours at Karen's bedside. Emily bought and applied perfume and nail polish and instructed me on my “personal care” duties for when she left. We shopped for goodies to give Karen from the Cluny Museum’s gift shop.
We also bought a selection of woolen berets for the whole family from a street vendor on Blvd. St. Michel. A year later in Minnesota, my colleague Roger was battling a brain tumor. A sizeable surgical scar and Roger's new-found sense of modesty needed protection from the elements and others' stares. An impulse at the office one day - Voila! My beret covered his head and the scar. The beret’s jaunty angle bespoke devil-may-care fashion insensibility rather than medical crisis. Later that spring, after a wind blew away the first beret and none were to be found in Minnesota’s stores, Emily donated one of hers. Cathy, his wife, tells me that Roger was able to venture out more often in those last months of his life because he had this simple woolen cap.
A coworker, Jack, connected me to his partner's niece, Nora. Nora lives in Paris with her family. I called her and she gave me the name of her family doctor, Francis Slattery, an Irishman with 30 years of practice in Paris. She also turned up a lead on an apartment that an acquaintance rented out. I was invited to their home but never had a chance to take up all these offers of kindness.
I called Dr. Slattery his receptionist was expecting my call and he picked up right away. I explained what I understood of Karen's situation. He assured me that Salpetriere's neurology center was the program of choice not only in Paris but throughout Europe. When Princess Diana crashed in Paris, the SAMU crew brought her to Salpetriere. I was reassured that we had good communication with the medical staff at Salpetriere.
Karen's cousin has a friend living in Paris and working as a translator of French and English
medical documents! A skill we never had to take advantage of and a connection we never had time to follow through on.
My coworker, Mike and I had talked just before leaving about the coincidence of his brother's visit to Paris on the same weekend as ours. A rheumatologist, Dr. Persellin received a message from Mike and called me on the second night. He listened to my summary of Karen's condition and treatment, reassured me that they were doing the right things and offered to come to visit.
The U.S. consulate assigns two staff members to assist with emergencies like these. They faxed lists of English speaking medical personnel and internet cafes in Paris. There is the “American Hospital” in Paris, but consulate staff told me that it was unlikely that the English would be better there and it is a general hospital without a specialty in neurology.
Karen's sister Luanne employed a recent graduate of Bethel College. His friends, Joe and Holly, were working in Paris as missionaries. A call to them resulted in many kind words and an offer to use their internet connection for email communications. For the first week, Joe dropped by my hotel each day with yellow printouts of email messages from friends, families and coworkers and then sent back messages that I typed out on the laptop he lent to me. Joe visited Karen in the hospital but we never saw the mysterious Holly.
Carol Ann, my cousin, has a brother-in-law who moved to Paris 20 years ago, married and has worked there ever since. Like his brother, Chip, Dennis is 6'4" and easily recognized when he walked onto the ward. At his first visit, we discovered that he and I were reading the same book! Dennis accompanied me on walks and at meals. We discussed Paris, Shakespeare, Jesse Ventura, George Bush, family, the Boundary Waters Wilderness Area, work, medicine and more.
My friend Tom's dad is a doctor in Minnesota and has medical colleagues in Paris who, as it developed, we did not need, and a friend who lives in Paris and knows all the Parisian doctors who might be unknown to Dr. White. Tom provided me great help by passing along via email his recollection of critical French dialect: "Jambon = ham; fromage = cheese!"
A colleague, Jerry, has a brother in Denver. His goddaughter, Anne, is a lawyer who worked at a firm in Paris and rented an apartment in a 17th century building on Rue de l'Odeon near St. Germain des Pres on the Rive Gauche (Left Bank.)
Anne and Mark were leaving for a quick trip to the U.S. and turned their apartment over to me. They left their keys and good wishes with me, a virtual stranger. They shared their hospitality with me (and later my brother) for another week upon their return. Anne and Mark were dedicated Georgetown graduates who volunteered with the University to build its European alumni association. They spent tense hours negotiating arrangements for an alumni event featuring the President of the University. Anne’s Parisian contacts included a friend who would arrange an unforgettable reception at Versailles - if only the penny-wise and pound-foolish alumni office would cooperate!
After Emily's departure, my brother Philip took advantage of the assistance offered by Karen's colleagues at NWA and flew to Paris from San Francisco. We stayed at first on Rue de l'Odeon and then back at Hotel DeVillas on the corner of Rue de l’Hopital and Rue St. Marcel, just across the street from Salpetriere. Philip, like Emily, kept me company those days and nights during hours when visitors were not welcome at the hospital.
People with no associations except shared humanity also enriched our lives and deepened our experiences. American prejudices against the supposedly “haughty” French are wholly undeserved.
Emily and I found a brilliantly colored restaurant, Coco de Mer, a few blocks away at # 34 Blvd. St. Marcel, where we enjoyed a wonderful meal inspired by food of the Seychelles Islands. (The Seychelles, 115 tiny islands in the Indian Ocean north west of Madagascar, are barely above sea level and may soon be lost due to the melt of polar ice caps.)
Some weeks into her hospital stay, I offered to bring Karen lunch from Coco de Mer. I walked over to order food to go and explained that it was for my wife who was in the hospital. The owner apologized that they did not have any takeout containers, could I come back another time? They would be sure to get some. "Of course, could I pick something up at 6:00 p.m. tonight?" "Of course, what would you like?" I ordered the red snapper, shrimp and mango salad, rice and delectable side dishes that Emily and I had enjoyed so much on our visit.
I returned at 6:00 p.m. and Coco de Mer's door was locked. Duh! Paris’ restaurants reopen for dinner at 7:30 p.m.! But my rattling roused the staff. They let me in and then finished cooking the fish to achieve an optimal crisp and hot but tender inside before packing it and the side dishes in their new take out containers. The meal was a wonderful contrast to Karen's bland and unappetizing hospital fare. I later learned that Coco de Mer had a take-out restaurant only a few blocks from there, but that evening they were happy to oblige this special request!
One day Emily and I sat on the subway across from a 60 year old woman wearing a red ribbon on her coat. She asked in French if we were Americans; we answered "Oui" and explained in French that Karen was at Salpetriere after a stroke. Emily asked what her ribbon was for. The woman's son had died of AIDS at Salpetriere not long ago. We exchanged condolences and best wishes; she got off at the next stop.
Part 8: Dependencies and Partnerships
Professor Gerald Rancurel headed a cerebrovascular emergency practice and taught a multinational team of doctors in training. His place at the top of a hierarchy was evident from the entourage who spread out in his wake as he made rounds. He commented or instructed quietly but authoritatively as his staff updated him on each patient's condition. http://www.publihelp.fr/conference/confrancurel.html
His No. 2 is Dr. Sophie Crozier, a neurologist in her thirties who directed Karen's daily treatment and stood at Rancurel’s shoulder during rounds. She spoke better English than we spoke French and communicated Karen's diagnosis and treatment plan to us and Karen's doctor in St. Paul. The third person on the team was Dr. Michael Obadia, the tall dark haired fellow who displayed the brain scan films for me early in the stay.
Most of the work in any hospital is done by nurses, orderlies and nurses’ aides. In the course of a month, their personalities and roles were revealed. The single person who never tried to speak English to us was the head nurse. Herve directed staff and visitors showing no patience for anyone Emily called him "The General.” Someone has to be in charge of the minute-by-minute operations of a critical care facility; there is no doubt that here it was he. He seemed always to be on the floor, despite the law setting a thirty-five-hour workweek in France.
Medical personnel in France, like most workers there, are organized in labor unions. However, shortages mean that the hospital staff is not able to take advantage of legislation limiting labor to 35 hours per week. During our stay, there were job actions against the state health agency that runs the hospital. Dennis Neuenkirchen pointed out that medical staff would work their regular hours and go to their labor demonstrations or other activities in "off" hours.
The nurses’ aides and orderlies assisted and entertained. On day two or three, Karen was suddenly scheduled for some tests. It felt bad to be left behind, not knowing what was happening. The young orderly must have read my face: "Do you want to come?" I grabbed an end of the rolling bed and we headed down the hall, squeezed into the elevator, rode it to the basement and then twisted through tunnels to the Babinski building. I stopped at the door to the room with the CT or MRI equipment and waited for the tests to be completed. This small gesture was so important at that moment.
Karen was so pleased when another aide, Claudia, offered to wash her hair. Karen was totally confined to bed not sitting up nor even rolling onto one side on her own, but a plastic basin and plenty of towels behind the head allowed a good shampoo. We learned that they were scheduled to do this only every third day, so I took over the shampoo work most days. Toward the end of the stay, another aide, Marie Pierre, told of her surprise at how often Karen wanted her hair washed in France, she said, they shampoo only once a week or so, in her home region only once a month!
Marie Pierre's English was limited but we talked of home. Minnesota and the upper Midwest she’d heard of, because she loved the David Lynch movie The Straight Story. It is the true story of an 80-year-old Iowan whose loss of driving privileges did not stop him from visiting family in Wisconsin. He just hopped on his lawn tractor and drove there! Wiley Harker, a suave 80 year old part-time actor and substitute secretary in my office had a small part in this movie!
About ten days into what turned out to be a one month stay, Karen was moved from intensive care to a lower level care bed down the hall. Physical and speech therapy began. Physical therapy was done by Mdme. Lawrence, at this stage just manipulation of Karen's right arm and leg. The speech therapist, Peggy Gatignol, found English language materials for Karen to work with. An early assessment included Karen reading a paragraph and then being tested for comprehension a few minutes later. She did fine another relief since medical scans could not give us any clue concerning cognitive impairments from the stroke.
Emily had also brought books from the U.S., including a small collection of poetry. I read most of this to Karen, but with encouragement Karen would read a six or ten line poem or parts of another. Speech was still exhausted her. In the London Times we read an excerpt from La Prisonniere by Oukfir and Fitoussi. It is the story of a female member of a Moroccan royal family who is imprisoned for treason and fights to live, raise a family and escape.
I also had with me my usual random selection of murder mystery novels, but this time rather than speeding through a book every day or two, I read aloud to her. Ruth Rendell's Kissing the Gunner’s Daughter: sumptuous descriptions of upper class British households and gory details of death. In The Remorseful Day we discovered the ultimate proof of Inspector Morse's humanity. Because each word registers when reading aloud, I came to better appreciate the authors' descriptions of the English countryside and cities and the characters populating them.
We ourselves encountered some other “real characters” at Salpetriere. Midway through our stay a muscular young man with a shaved and bandaged head and tattoos came onto the ward, accompanied at all times by a police officer. He was a prisoner with a cerebral-vascular problem and an attitude that came through without any translation. Karen shared the intensive care room and later another room with younger woman who was often very agitated. We learned later that she was suffering the consequences of excessive drug use, a significant cause of stroke.
One patient about Karen's age was French woman of Moroccan descent. It became clear that care for her family and children was a grave concern for her, despite her apparent stroke. Another woman had come to Paris from Turkey for treatment. Her husband was a manager for DHL Express in Istanbul and invited Karen to use his cell phone to call St. Paul to talk with Matthew, Sara and Deborah. Some patients were sad, others confused and all had different levels of communication problems. We formed a small changing community of visiting family members and friends who assisted other patients in the room in daily tasks.
Part 9 Discovering Paris
I stayed two nights at our original hotel and then walked the main street alongside the hospital checking out hotels. I found Hotel DeVillas, a small, moderately priced place to be conveniently located and took a room there. I shared it with Emily when she arrived and then later with Philip. There are many brasseries and restaurants in the neighborhood where Emily and I took our breakfasts, dinners and an occasional late night bottle of wine, plate of bread and cheeses. In addition to Coco De Mer, the Seychelles specialists, we enjoyed Indian food at Restaurant Dip, Vietnamese, African and traditional French food - wonderful breads and tartes, and much too rich pates.
The only bad meal came one late evening when we ducked into a nearby place advertising Italian food. Mine I don't remember, but Emily's pasta sauce must surely have come from a can. We decided it was a just punishment for our excess earlier in the day we had brought a tarte framboise (raspberry tarte) into the hospital for Karen. It was delicious! And far too sumptuous for her system, as the tarte was regurgitated most vigorously. This caused some concern as violent gagging action was not a good thing for a healing carotid artery.
French hospital food is more "hospital" than "French." Bland is the dominant flavor, mysterious the typical meat. However, once a week Karen got croissants for breakfast and most evening meals included a satisfying soup served hot from a large pot on the trolley. One notable exception to the general run of culinary disappointments at Salpetriere was the vending machine coffee! Your francs bought, not a cup of Nestle’s instant, but true fresh-brewed café that was both hot and flavorful.
I eventually figured out the pay per minute internet system in the foyer of Hotel DeVillas and began my electronic correspondence from there. Later I shopped about and found an internet café near the University only 10 minutes’ walk away with much cheaper rates and English rather than French style keyboards.
I, and later Philip, were hosted for more than a week by Anne and Mark in their 17th Century Quartier Latin apartment on Rue de l'Odeon. Spacious, with high ceilings and tall windows, the building featured a paved central courtyard, underground wine cellars for each unit (which they used for bike storage) and a resident caretaker who kept a watch on comings and goings. At night, even taller windows and bright chandeliers on the second floor revealed a bourgeois home of higher class inhabitants. To enter the apartment building, an electronic combination push button lock unlatched the massive black wooden door. Crossing the courtyard and passing by a print shop's back door, we climbed a broad staircase with age-polished wood and a thickly woven red D'Aubuisson style runner carpet to the fourth floor. Moving out would not be easy, moving in a real chore. Some solve this problem by hiring a small crane to move furniture through windows from the street.
Across the street and more than 200 hundred years ago, lived the American revolutionary Thomas Paine. Down the block, Sylvia Beach's Shakespeare & Co. published James Joyce's Ulysses in 1922. At the end of the block is the Odeon Theatre, first built in 1782 for the comic theatre of France.
Behind the Theatre are the Palais and Jardin du Luxembourg. They are still named "Luxembourg" although the mother of Louis XIVth, a Medici, purchased the property from the royal family of Luxembourg in the 1600s and commissioned the Palace and its magnificent formal gardens. The French Senate now meets in the palace while tourists and Parisians enjoy the grounds and gardens.
Turning right upon exiting the apartment's courtyard, I walked past an antiquarian shop specializing in Verneiania books and things by and of Jules Verne. Prominently centered in the warmly lit window is a decades old 5 foot long scale model of Capt. Nemo's submarine, The Nautilus, which descended 20,000 Leagues Beneath the Sea. Two blocks closer to the Seine stands a brightly lit theatrical costume storefront with masks, lacy ruffled shirts and colors to dazzle a stage or party. In the opposite direction, a shop sells teapots but only Japanese teapots. Throughout the neighborhood are bookstores, brasseries, and bread shops. And bars. I learned that closing time is about 3:00 a.m. when I was awakened by revelers the first Friday/Saturday I stayed on Rue de l’Odeon.
After the first week, I walked most places in Paris. When staying in the apartment near St. Germain des Pres, I found the hike to the hospital took about 45 minutes depending on how meandering a route I took. It is time I will treasure forever.
My favorite paths took me past the Sorbonne and Pantheon into the Contrescarpe neighborhood with its homes, shops, restaurants, small hotels and its cobbled and winding streets like the Rue Mouffetard. One night, Philip and I dined at a traditional French spot in the neighborhood and feasted on wonderfully rich and tender bouef bourguignonne. We wandered about on the streets amongst other knots of diners. Suddenly we heard lively middle eastern music and peered into the front window of an establishment where patrons sat on cushions and shared tubes of smoke from hookahs! On another midnight stroll in Contrescarpe, I wandered into a basement level music shop and joined other shoppers looking for a bargain CD (Ray Charles!). Mornings, I saw shopkeepers washing off cobblestones and setting up sidewalk displays of fruits and vegetables in stacked arrangements passed with little change from generation to generation.
While I walked nearly everywhere, the train had brought Karen and I to the corner of St. Germain and St. Michel from the airport (and me back there to greet Philip) and I used subways for longer journeys. http://www.webscapades.com/france/paris/metro.htm One day I looked up to see a poster at the Odeon station decrying anti-immigrant bias in housing a fair housing bill board sponsored by the Ligue Internationalle Contre le Racisme et Antisematisme! A reminder of my own civil rights work in Minnesota.
The subway stop for Salpetriere was Gare d'Austerlitz. While exiting the station one day I noticed a small plaque on an out of the way wall. It read something like this: "It was from this spot in 1944, that thousands of France's Jewish men, women and children were put on trains to labor and death camps in Germany and Poland on the orders of the French government. Never forget."
I took out my camera to capture this message and this caught the attention of a Frenchman who looked to see what I was photographing. He read the plaque and told me he had passed by hundreds of times and never seen it. "Merci." he said with emotion in his voice. "N'oubliez pas." I responded. "Oui, n'oubliez pas." he promised. “Never forget.”
Another plaque at Gare D'Austerlitz honors dozens of Salpetriere's staff who were executed by the occupying Germans during WW II for their acts of resistance.
With all the walking I did between the St. Germain des Pres area and Salpetriere, inexplicably only on my next-to-last day in Paris when walking down past the School of Law at the Sorbonne did I look up to see La Tour Eiffel in the distance. I had glimpsed its lights at night through buildings near the Jardin du Luxembourg, but never looked up at the right time during the day to see the famous steel tower. Was my dad's only cousin Madeleine, a Smith College graduate who studied at the Sorbonne before the war, this oblivious?
Originally built as a temporary showpiece for the World Exposition, the Eiffel Tower is a signature landmark that overpowers even its huge image. I walked from l’Hopital to the Tower. I stood in line for the elevator, went to the top and with more than a little vertigo, looked out over the City. From there I could see Notre Dame settled comfortably in the Seine, La Chapelle de St. Louis at Salpetriere, Les Invalides, La Louvre, Sacre Coeur and much more in central Paris. Far out on the northwest horizon is La Defense a contrasting collection of urban skyscrapers.
Also visible, in the Place de La Concorde, was another "temporary" landmark. For the millennial year celebrations, Paris permitted erection of continental Europe's tallest Ferris wheel. Three months past the turn of the millennium, the five story tall wheel stood its ground and continued to turn and turn and turn and earn its owner more and more and more francs. As the owner of the largest wheel on the continent, he also owned the only cranes large enough to take it down. Why stop a good thing just because the government wants you to?
In the Eiffel Tower’s stairwells, posters relate construction challenges and historical details, tell tales of war heroes' exploits and commemorate motocross motor bike races up and down the stairwells!
On the afternoon we left Minnesota for France, I had begged out of the end of a meeting explaining that I had to go to Paris. My colleague Jaime rushed up and said: "You have to get me a rubber cake pan! They're great!" "A what?" She scrawled a note: "rubber cake pan kitchen goods store Madeleine subway stop." "I'll be there only a couple days, probably won't have time!" "That's all right if you happen to get there." Well, there was time; Philip and I found the Madeleine stop, the shop, and the rubber cake pans. They are floppy heat resistant silicone, perhaps 1/10th inch thick and come in various shapes and sizes. I am told that they are particularly convenient for bakers of pineapple upside-down cakes.
Emily, Dennis, Philip and I walked along the left bank of the Seine from Salpetriere up to the area of Notre Dame several times. A seldom-visited sculpture park with a dozen modern stone and steel pieces sits just downstream of the Bercy Bridge. Walking further downstream, we encountered the bateaux mouches or the long boats that ply the river. A few have been made into comfy looking homes complete with lush gardens and others into restaurants. (Dennis lived in one in his early time in Paris.) Most are now tour boats. Homeless people cooked breakfast over fires under the Pont Sully, just upstream of Notre Dame. We came up to the great buttressed cathedral from below and viewed it away from the crowds before entering to marvel at the huge medieval construction and its magnificent stained glass.
In 2002, Paris' new mayor shut down the freeway on the right bank along the Seine and created beaches with tons of sand, beach umbrellas and kiosks for suntan lotion and cool drinks. It became a most popular attraction for natives and tourists and reduced traffic and air pollution in the City.
For a month, I spend one half day at the hospital and one half touring Paris and seeing: La Louvre, the Musees D'Orsay, Cluny, Rodin, Histoire de Paris (Carnavalet), Picasso’s erotic work at the Jeu de Palme, the modern art at the Pompideau Centre, the Mitterand Library, the old bordeaux wine depot, the UNESCO building, the shiny new and already shuttered American Centre by Frank Gehry, and many other famous and lesser known sights.
Other writers have described and told their stories better than I. Suffice it to say that I used to think that Hollywood and the like were the emperors of ostentation, but I see the 17th century upper classes in Europe have it all over them! Beauty and glory and gaudiness and godiness and everything in a never-ending parade of colors and forms.
Part Ten: Two Societies= Health Care Systems
When I registered Karen that first afternoon, I gave the staff a copy of our Health Partners HMO card and decided to think about costs later. When our departure neared, Anne helped me with the billing office. Madame Rosie Oille of the staff had charge of foreign accounts and explained that when Karen had checked out, we should stop by the office for a final bill. If convenient, they would accept a token payment at any time. In francs. Emily had cached some of Deborah's dollars in a money belt on her trip to Paris I had $500 of that remaining, exchanged it at a bank and paid the first installment.
The bill, for a week in intensive care, then three weeks in a highly specialized stroke unit, CT scans, MRIs, ultrasounds, EEGs, medications, bedding, food, aides, orderlies, rehabilitation therapists, nurses, lab techs, radiologists, neurologists, recordkeeping, tPA, medical transport to the airport, international phone calls, utilities, insurance, administration, and overhead totaled $21,000. Twenty one-thousand dollars! The Health Partners business office staff estimated that had this care been billed in the U.S., it would easily have run ten to twenty times the price: $200,000 to $400,000! According to the federal Agency for Healthcare Quality and Research, in the U.S., hospital-only charges (such as nursing care, laboratory analyses, diagnostic tests, medications, use of operating rooms and patient rooms, but not doctors’ charges) for an average stay of less than a week were nearly $20,000 for stroke patients (2010?).
Why is the bill for the most advanced stroke treatment in the world, in France, 10% that of similar or maybe not so advanced care in the U.S.? There are many reasons: single payer health care the French social security system picks up all but a small portion of French residents' health care costs. Nearly all employed people have supplemental insurance benefits that cover the rest. We can be sure that there is a significant direct government subsidy for this public hospital. Doctors make much less money in France than in the U.S. The emphasis in the hospital is on medicine not appearances and niceties witness the less than sparkling clinic walls and floors and the predominance of hand-operated adjustments in the hospital beds.
There are more medical staff, far fewer accountants in French medicine than in the U.S. I was told that the cost of care in the hospital clinic is calculated as follows: The estimated total cost of care for all patients for the year is divided by the number of patient days estimated for the unit. If the unit needs $5,100,000 in patient fees for its 20 beds, each bed is expected to generate $255,500 per year or about $700 per patient per day. Using this simple arithmetic, rather than complicated billing and accounting for every box of tissues, every dose of pain killer and every examination, makes their spending on administration and overhead a fraction of U.S. costs. Our cost-control system may be one of the causes for our ever-rising costs! At least in France, semi-socialized medicine leads to a rationing of extras but excellence in medical care and little cost to patients. A British newspaper survey, read when we were in Paris, rated France’s as the absolute best system of medical care in the world.
In the U.S. it would be second nature to try to shift the cost of this treatment from us to someone else - I did speculate with my new friend Anne about the ungodly time it took for the hotel staff to get us out of the hotel and into competent medical hands. What would we have done in the U.S.? Well, ask anyone one here who has suffered due to delayed treatment - they or their insurance company will likely be at a personal injury lawyer’s office, to try to send the bill to the hotel and its insurers. In France, however, the tort system is far less developed - and with socialized basic care for people with serious illness and disability - it just is not needed. If everyone shares in the cost of misfortune, and they and their families seek the same social benefit when needed, then it is neither humane nor efficient to engage in the cost-shifting litigation of the kind we resort to in the U.S. The cost of shifting the costs of tragedy is one more price we all pay, but don’t calculate, for living in our low tax, privatized nation.
We drove away in an ambulance from Salpetriere after getting medical care that would have cost quarter million dollars in the U.S., having paid $500. We received the final bill a few weeks later. With very little administrative trouble with Health Partners (nonprofit by Minnesota law), we got a check from the HMO payable to Karen in dollars. The HMO refused to deal with francs, Salpetriere to deal with dollars. Happily for us, the exchange rate moved favorably and the final wired payment to Salpetriere in francs cost us just a little less than the dollars sent to us by Health Partners! We are fortunate to have had both very comprehensive health care coverage through my employer and the most effective medical care in the world in a socially conscious nation.
Part 11: Historic Flights
After 20 days, we began to discuss returning to St. Paul. Dr. Crozier wanted to be certain that the carotid artery was healed and Karen fully stabilized. She consulted by telephone with Karen's physician, Dr. Martina Hartmark in St. Paul. A specialist nurse at Health Partners began the search to find a way home for us. Only during the final week in Paris did Karen get out of bed with help a few times and into a bedside chair, so some kind of bed was required. In retrospect, a seat in NWA's first class cabin would have been the best and a safe choice.
Health Partners contacted one of the few medical evacuation companies that operate worldwide. The company arranges the flights for medical personnel to travel with the patient. Sometimes, they arrange for an airline to remove coach seats and install a stretcher bed and curtain for the patient. At first it seemed that this would be the way home a flight from Paris to Amsterdam then home via NWA or KLM. But negotiations dragged on. A week passed. I was increasingly unhappy as more days dragged by after Dr. Crozier cleared Karen's departure it was time to go home, to family and to intensive rehabilitation.
After it seemed that it was finally was arranged, on the next to last day plans changed. We would fly with a medical team in a Lear jet from Paris to Minnesota. The medevac company had located a plane and team in Norway and persuaded them to provide service at a discount price of $32,000 so they would not have to return to the U.S. empty of paying passengers. (Hourly flight costs, without medical services, ran about $1,500.) An ambulance drove us to Le Bourget, a smaller airport outside of Paris, where Minnesota’s Lucky Lindy, Charles Lindberg, had landed the first trans-Atlantic solo flight.
We drove up to a Lear Jet 36, Lear’s longest range model. The rear cabin is about thirteen feet long, four feet wide and four and one-half high. Everyone's luggage was crammed behind rear seats occupied by two nurses from Fairbanks, Alaska. Karen was strapped to a horizontal stretcher fastened to mounts on the door side and I took a narrow seat beside her. The third man of the flight crew had slightly more room at the front by Karen's feet. Its standard passenger load is 6 people. The pilot and copilot climbed into the front cabin and we were quickly off.
This aircraft sped along at nearly 450 miles an hour and more than 40,000 feet, faster and higher than many commercial air liners. We sped over England and the snow-covered highlands of Scotland on our way to a fueling stop in Iceland.
Our transport team had come to Norway from Alaska transporting a Special Olympian who had been there competing in cross-country skiing events. She developed seizure and behavior problems in Alaska it had taken six or eight staff to restrain her in the hospital. Medical evacuation was necessary but a bit scary for the two nurses who would have had to somehow deal with this woman’s fantastic upper body strength if she lost control in flight. But they enjoyed a smooth flight from Fairbanks to Oslo.
Brian McKay, an RN and EMT, had done this work for years but now worked mainly in a regional medical center in Alaska. I asked about his most challenging evacuation. It was removal of the oil executive who was stricken with some problem when in the area of the Golden Triangle of Myanmar, formerly Burma. Getting him out required a long four wheel drive journey through backcountry trails controlled by rebels and opium gangs. Paris to St. Paul a piece of cake!
We landed in Iceland for refueling of plane and crew. I joined the crew to walk through the international terminal, eat a cafeteria meal, make a duty free scots whiskey purchase and cobble together a snack for Karen, who of necessity remained prone in the plane.
From Iceland our route took us over the coast of Greenland the pilot banked to a 45-degree angle so we could look down on the subcontinent and ice bergs. Refueling took us next to Goose Bay, Labrador, a lonely northern aviation outpost that services non-passenger traffic in a warm and modern facility that offered "free" snacks, showers and internet service along with the $5000 in fuel.
In 1945, my father, took off from England in a B17 Flying Fortress bomber to return himself, the crew and plane to the U.S. After more than 30 bombing missions and several mercy flights, including one where prisoners he repatriated from Austria rushed off the plane to kiss the tarmac at Chartres, France, it was finally time for them to come home. At the end of W.W. II he flew from England to Iceland to Goose Bay, Labrador. And then to Bradley Airport in Hartford, Connecticut, where he walked away from the plane and never looked back.
In Goose Bay, our crew made arrangements to switch our arrival from the MSP international airport to the business airfield on the river flats across from downtown St. Paul. The third and final leg seemed the longest, flying endless miles over barren Canada. We finally swooped in quickly to the airport and answered "No!" when the customs officer stuck her head in the plane door and asked: "Anything to declare?"
We taxied over to the small terminal building where our family and friends had been waiting Sara, Matthew, Karen's mom, Genevieve, sisters Luanne and Nancy and their families, Emily and our good friend and caretaker, Deborah. Deborah could not believe the number of people who climbed out of the small plane like a dozen keystone kops getting out of a car! Karen cried from having been confined on “the rack” for ten hours or more and then cried for the joy of seeing family and friends. The welcoming party rushed out onto the tarmac and stuck their heads into the door to give greetings and hugs before Karen was transferred from the plane to an ambulance to a one mile ride to the Regions Hospital E.R..
Part 12 Still Reconnecting
Karen began occupational, physical and speech therapy right away and stayed at Regions Hospital in St. Paul for another month. OT is work with hands, arms, and shoulders. PT is work on walking, moving in and out of cars, chairs, beds. This work at Regions and later Abbott-NW’s Sister Kenny Institute and then Courage Center continued for more than a year. At Sister Kenny, Karen was hooked up to electrical leads that are connected into computers. One problem with stroke recovery is that it’s easy to say “What is the use?” when fingers barely move with even the greatest efforts. No stimulus, no rewards. So this treatment permits the barest movements to signal the cards to flip in a computer solitaire game - there is some small reward! Treatment also includes a few medications, Botox injections and regular acupuncture treatment. For several months, Genevieve, Karen=s mom, drove almost every day from her new home to ours to monitor and keep Karen company.
A year later Karen walked quite well, but with a stiff-legged gait. She could walk a half mile and if motivated and accompanied by someone whose arm she can hang onto, two miles. Her right ankle has very little movement, so rough ground easily trips her up. Stairs are obstacles because her right leg and ankle bend so little. A simple but expensive left-foot gas pedal mounted to the car floor and connected to a pivot and thence with the accelerator, a wheelie-knob and automatic wiper controls allows her to drive without trouble. We had a tandem bicycle purchased from another stroke survivor that Karen and I get out on a few times but she found it too dangerous and it was sold.
Karen’s right arm and hand recovered little. A south paw before, she is now wholly dependent on her left hand. There is limited movement from her right shoulder, a little at the elbow, slight in the wrist and barely perceptible in the fingers. Strangely, yawning causes significant involuntary movement of the right elbow!
When speaking, people understand Karen, though she speaks slowly and with a rough cadence, a symptom of Broca's aphasia. Some apraxia, or mix up of words, continues. Reading, calculation and problem solving are not as quick as they were before the stroke. She tires easily. Stress and frustration make speech and decision-making harder. Attitude and spirits remain amazingly high. Not able to work, Karen volunteered at the Wellstone for Senate campaign and now a couple hours a week for the Stroke Association, AFS (hosting foreign exchange students) and Community Health Charities.
The lost brain mass is not regenerated, but apparently new connections can be developed between the brain and the parts of the nervous system previously served by that part of the cerebrum. These internal connections are important but we have discovered that our human connections are just as critical to survival and recovery.
J. E. Wilkinson, December 2005 partial revision March 2025
balthazarw@gmail.com
A review of sorts from a neurologist who wrote about Charcot and his work in forensics.
Subject: Re: my encounters with Charcot
To: "james wilkinson"
From: Christopher_Goetz@rush.edu
Date: Fri, 18 Jun 2004 14:03:42 0500
Your account is filled with familiar images and names of places, doctors, and atmospheres I recognize. I have not had the tables turned on me as you and your wife experienced and suddenly plunged into the role of patient rather than doctor, but your account is a tender and hopeful tale.
From the Hotel Claude Bernard, very close to my apartment on Rue St. Jacques to the pavilions of the Salpetriere, I recognize the paths you took but not the sense of helplessness and distance from home you experienced. Being so familiar with your descriptions and being a neurologist, I followed every element of the journey, but learned afresh from you on the manner by which
a strong couple can turn a despairing challenge into a renewal. Thank you for sharing this essay and though Charcot showed a cool exterior, I am certain that his well-protected tender heart was moved as you and your wife rallied against the odds. If you have occasion to share the essay with
the French doctors, some known to me personally, I warn you that they will find it intensely open and American in its candor. Again thank you and I send my good wishes to both you and your wife.
Chris
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