Who's Afraid of Angela Rasmussen?

Once upon a time, scientists explained their findings and opinions in peer-reviewed journals or in carefully worded lectures delivered at scientific meetings. Now science moves at  internet speed and Twitter has taken the place of learned societies as a favored forum.  In the white hot propaganda war over the origin of SARS-CoV-2, scientists on opposing sides of the lab-leak versus nature debate have taken to Twitter like penguins in search of lunch in Antarctica's waters. There they heave nasty adjectives at their opponents with all the subtlety and care of the late Rush Limbaugh. Recently, a virologist named Angela Rasmussen (who claims over 200,000 Twitter followers), formerly of Columbia University's Mailman School of Public Health, and now with the University of Saskatchewan's Vaccine and Infectious Disease Organization, threw certain adjectives at me. I had been a guest on a Canadaland podcast explaining the findings of my new book, On the Origin of the Deadliest Pandemic in 100 Years, to Jesse Brown. Ms. Rasmussen, who, since the pandemic began, has turned into a one-woman defender of globalized virological science on as many TV shows, newscasts, magazines, and newspapers as are willing to quote her (see her cv), got herself invited to the Canadaland podcast to denounce my book and her version of the main theory it propounds.  

I  don't normally fuss over critiques of my published work. Journalists who throw stones are used to stones being thrown back and a good critique improves the work.  I also try to live by a line made famous by champion boxer John L. Sullivan when some drunken twerp challenged him in a bar: "If you hit me," said Sullivan, "and I hear about it...."On the Origin of the Deadliest Pandemic in 100 Years exposes undeclared competing interests, cover-ups by China's officialdom, the manipulation of Canada's National Microbiology Laboratory by China's civilian/military virological establishment, and that labs outside the reach of US regulation have been doing dangerous gain-of-function experiments with USAID and NIH money given to them via a New York charity. The book follows the money and it names names. It shows that science done in authoritarian regimes cannot be trusted and why. So I expected pushback and I welcome it. 

Nevertheless, I must respond to Ms. Rasmussen. She makes too many untruthful claims to ignore. While Ms. Rasmussen is entitled to dump on my book if she's read it, her critique on the Canadaland podcast made it clear she hadn't. Though I wrote to Jesse Brown, as did my publisher, asking him to attach my rebuttal of her false assertions to her podcast episode, Canadaland decided not to "re-litigate" the matter. Thus, this blogpost.

I listened with amazement as Ms. Rasmussen began by accusing me of publishing a book  that is "riddled with error starting with the title." Why was the title in error? Ms. Rasmussen insisted that HIV/AIDS is the deadliest pandemic in 100 years, not SARS-CoV-2/COVID-19. While it is true that HIV/AIDS has killed about 35 million people over fifty years, Ms. Rasmussen must know that the WHO--which is the international body charged with declaring pandemics---did not declare HIV/AIDS to be one. Killing 35 million over fifty years is bad, but killing at minimum 6 million people around the world (while infecting hundreds of millions) in 18 months is the worst pandemic in 100 years.   

Ms. Rasmussen then asserted that my publisher failed to fact check the book as evidenced by the title. In fact my publisher had four fact checkers go over it from the cover to the acknowledgements--400 pages with over 400 end notes drawn mainly from scientific publications but also from interviews with virologists--  starting with the title.

Ms. Rasmussen insisted that if only I'd bothered to interview virologists, I would have been set straight on a number of points, including the function of a genetic sequence conserved in all coronaviruses known as the RdRp ( which stands for the RNA dependent RNA polymerase). That's when it became quite clear that she had not bothered to read the book but was responding to what she thought I said in the interview I'd given Jesse Brown. If she had read the book, she would have known how many virologists I tried to interview, and who among them finally agreed to speak with me. One who did consent to be interviewed, virologist Linfa Wang, is a close associate of Shi Zhengli, the so-called Bat Woman of China. It is Shi Zhengli's lab that has become a focus for those arguing that a leak from a lab may have caused the pandemic. I interviewed others as well, but in particular a Canadian government virologist, Basil Arif, who ,since 1998, has worked on the journal Shi edits, Virologica Sinica, which is  published by the Wuhan Institute of Virology. Arif has also done  important papers with Zhihong Hu, the former director of the WIV and the former boss of  Shi Zhengli. Arif has been going annually to the Wuhan Institute of Virology for more than twenty years, which cannot be said of Ms. Rasmussen who admits she doesn't know Shi Zhengli, but knows "friends" of hers, and that she is "honest." Unfortunately, as my book shows, that claim is also far from true.

When Brown asked Rasmussen why, if my book is riddled with errors, the well-known science writer and editor, Nicholas Wade, had praised it, she replied that Nicholas Wade should be ignored on the grounds that a book he wrote in 2014  defines him as a racist. (Racist is a word she hurls around fairly frequently, along with the epithet grifter.) Wade's views on the subject of intelligence, the subject of his book, are beside the point. The article he wrote in the Bulletin of Atomic Scientists-- describing, among other things, his concern about how leading scientists tried to label as conspiracy theorists all who raised the possibility that SARS-CoV-2 leaked from a lab--finally made it possible for leading major media in the US to publicly consider the question.  Instead of speaking to Wade's points, she used a vile name to try to write him off.

Similarly, she mis-characterized what I wrote about the unusual five year relationship between the National Microbiology Laboratory in Winnipeg and the leading military/civilian virologists in China, including George F. Gao and Major General Chen Wei of the Peoples' Liberation Army.

She also insisted that I believe the genome sequence known as RaTG13 is the viral ancestor of SARS-CoV-2. In fact, the book makes clear that I believe RaTG13 is a red herring and a symptom of the many things we have not been told about work done in Shi Zhengli's lab. While until recently RaTG13 was the closest published viral sequence to SARS-CoV-2, it is fairly distant and does not have the furin cleavage site which makes SARS-CoV-2 so efficient at causing infection. (We now know that Shi Zhengli, Linfa Wang, and American colleagues Ralph Baric and Peter Daszak sought $14 million from DARPA in 2018 to, among other things, insert furin cleavage sites into SARs-related coronaviruses isolated by Shi's lab. They didn't get that grant, but we don't know if Shi Zhengli got grant money elsewhere and did the planned experiments herself.) My book makes clear that I like best a quite different origin theory proposed by plant virologist Jonathan Latham and his partner,  Allison Wilson. They sought to explain why SARS-COV-2 appeared to be so well-adapted to human beings from the start of the pandemic. If it originated in a bat or jumped to humans through an intermediate animal, why were there so few mutations in the first few months of its circulation? This adaptation to humans from the start was pointed to by Alina Chan and colleagues who compared it to SARS's rapid mutation in the first quarter of its circulation. Chan's work was only published as a pre-print (and poohpoohed as such by Rasmussen) but many other scientists in peer-reviewed papers pointed to the same issue, including one paper published in the journal Cell and commented on by Rasmussen herself. 

Latham and Wilson argue that SARS-COV-2, or its direct ancestor, became well-adapted to humans in the lungs of six miners back in 2012. They had been hired to clear bat feces out of a copper mine in Yunnan, China. They got terribly sick with a SARS-like pneumonia. Three died. Samples of serum from them, taken over the course of several months, were sent to Shi Zhengli  at the Wuhan Institute of Virology because she was by then expert in SARS-like coronaviruses. Shi only admitted she had those samples after a Masters thesis and PhD thesis describing the miners' illnesses, treatments, and where their samples were sent, were discovered by members of a group of curious volunteers called DRASTIC. Shi Zhengli has still not published anything about what she found in those samples but has confirmed that they remain in her lab and that she revisited those samples "recently." Latham and Wilson argue that studying those samples would have given Shi a ringside seat  as a bat virus evolved in real time into something that could easily infect humans. When challenged by Jesse Brown on that point, Ms. Rasmussen said Latham and Wilson are plant virologists, so their argument holds no water. In fact, their argument had already been supported by a study done in the UK  and published in a medical journal in February. Doctors there took a series of samples of the virus over several months from a man infected with SARS-CoV-2. These samples were sequenced and showed in real time how the virus adapted through mutation to evade the different treatments tried.

Toward the end of the podcast, Brown asked Rasmussen if she knew why W. Ian Lipkin-- one of the coauthors of an early paper published in Nature Medicine that claimed a lab leak to be highly unlikely-- had changed his mind and wanted a proper investigation of that possibility.  Over most of 2020, that Nature Medicine paper was pointed to again and again as the refutation of any who dared to say a lab leak might have been possible. That paper served the propaganda interests of China, but also the interests of the American institutions that had funded Shi Zhengli's work--USAID, the NIH/NIAID--through EcoHealth Alliance, also a major funder of Lipkin's work at Columbia's Mailman School. Most of the paper's coauthors, including Lipkin, failed to acknowledge any competing interests, such as their relationships with those funders and with China. Ms. Rasmussen told Brown that though she used to work for Lipkin  (until 2020),, she did not know why he'd changed his mind. Yet Lipkin had been widely quoted on that subject. He said information had emerged about very dangerous gain-of -function experiments done by Shi Zhengli and her colleagues in low security labs. This is "unsafe." Even if Ms. Rasmussen did not read those articles, if she'd read my book she would have known exactly why Lipkin changed his mind.

Ms. Rasmussen may be a terrific virologist but critiquing a book she did not read is a dubious scientific practice. She might want to reconsider as well her strong support of global cooperation among scientists without regard to the conditions under which some scientists work. In particular, she should rethink whether we can rely on science done by colleagues working in authoritarian regimes. Early in the pandemic, China's officials made clear to its scientists that they must get official permission to publish anything on SARS-CoV-2, or else, and that getting that permission would depend upon whether an article fit the propaganda interests of the government of China. Scientists in the West need to take care to avoid being dragged into China's propaganda machinery, which is extensive. The Propaganda Department of China regards scientific publishing as part of its purview and reports directly to the highest leadership.

Ms. Rasmussen's appearance on the Canadaland podcast was clearly useful to China.  CGTN-- the China Global Television Network-- took note of it and published on its website an  article that bears this false title: "Virologist refutes Dewar's theories....'"  

Virtual Book Launch for On the Origin of the Deadliest Pandemic in 100 Years: An Investigation

Please join me for the virtual launch of my new book, On the Origin of the Deadliest Pandemic in 100 Years: An Investigation. Dan Wells, founder of Biblioasis, my publisher, has asked the wonderful novelist, non fiction author, and former Harrowsmith Editor, Wayne Grady to interview me. While the book has garnered interest from the CBC, the Globe and Mail, and the Toronto Star, there is a lot to discuss that newspaper articles and national news reports cannot convey which might be of interest to anyone getting ready to cast a vote in the federal election. The format permits us to take questions from any who have them.

The interview will be live-streamed starting at 6 p.m. on Wednesday, September 15, 2021. You can view the live stream and participate on Facebook or YouTube.

Hope to see you there.

Elaine

My new book: On the Origin of the Deadliest Pandemic in 100 Years: An Investigation

On the Origin of the Deadliest Pandemic in 100 Years: An Investigation is the title of my new book. It is the product of more than a year's hard digging into the origin of the SARS-CoV-2 virus. It will be out by the end of August in Canada, the first week in September in the US. 

It is without doubt the hardest book I've ever written. Doing an investigation during a pandemic required me to reinvent the tactics I used when I started in journalism in the early 1970s. My first job for Maclean's Magazine was to research a story on the planned Montreal Olympics for a writer who had strong opinions about why it shouldn't go forward, but no facts to back them up. To do that project, I rarely left the periodical section of the University of Toronto's Robarts Library because what I found there about past Olympics --all had involved financial boondoggles-- was great support for the writer's argument. ("You found this in the library? In the newspapers? In magazines? Really?") To do this one, I rarely left the house, working instead on two computers and a smart phone which provided instantaneous access to a tsunami of information. In the beginning, when we were locked down, no one was allowed to leave their home for any reason other than to buy food (and toilet paper) or for a medical emergency. Even if I'd ignored those rules, it wouldn't have got me anywhere. Most of the researchers I wanted to interview don't live in Canada and weren't in their labs anyway.  The borders were shut. Most government officials were working from home. Parliament was closed. So I was forced to develop my own imperfect version of the method of inquiry once wielded like a broadsword by the legendary US journalist I.F. Stone. His most important scoops came from careful reading of public documents and deft use of the Freedom of Information Act.   

I read everything I could find in learned journals, in pre-print literature and on academics' blogs about the nature of SARS-CoV-2, its relationship to other coronaviruses, its chemistry, its evolutionary history, the very unusual structure of its genome and its near perfect adaptation to human beings from the very start of the pandemic. I scoured the worldwide daily press, dived down many internet rabbit holes, made too many access to information applications. Most knowledgeable researchers, to my surprise, didn't answer my emails. That was a first: usually scientists want to discuss their work with journalists. It helps them climb the tenure ladder to get their ideas circulating in the broader community. More astonishing was the lengths to which civil servants went to protect themselves and their political masters from embarrassment by means of improper redactions and outright refusals to comply with the access to information law. As I figured out who I had to talk to, if they responded (a few did) I  interviewed them by means of email and telephone. But it was mainly through their published works that I came to know then. What I learned about the way globalized virological science has been practiced over the past twenty years surprised and enraged me. Certain names kept coming up: Shi Zhengli, Linfa Wang, Peter Daszak, Ralph S. Baric, Kristian Andersen, Zhihong Hu, Xianguo Qiu, Keding Cheng, Chen Wei, E.C. Holmes, George Gao. 

The book is both a detection narrative and an exposition of the political and scientific context for the worst public health disaster since the great flu epidemic of 1918/19. It points fingers. It names names. It describes the way in which the government of China, from the very beginning, withheld vital information and promoted false-by-omission scientific narratives in order to deflect blame even as it permitted the virus to spread. China's relentless PR campaign began at the end of December, 2019 even as the first mention of a nasty pneumonia circulating in Wuhan found its way to social media sites and from there to the West. China was helped in its efforts by the WHO, whose job is to protect the world from such disasters, and even more shockingly by some of the world's best scientific journals, our leading coronavirus experts and the US institutions which fund their work. All were more anxious to protect their interests than to pursue the truth. The book describes in detail how China used the globalization of biological science as cover for dual-use research that could not be done at home, reaching into the most secure laboratory in Canada for the study of the most dangerous pathogens  (Ebola, Marburg, Nipah). China's top military/civilian scientists (there is no boundary between them) used it as if it were their very own lab for years. 

More than 4 million people are known to have died from SARS-CoV-2 since December, 2019. That number is at least twice as high if suspected, but not certified, COVID deaths in India are factored in. It will continue to grow as the virus wends its way throughout the mostly un-vaccinated developing world, mutating as it goes, stumbling on ever more clever means to infect humans and the susceptible animals that live near us. These deaths are not and will not be the result of an unavoidable accident of nature: they are and will be the product of the very best human minds.

As the 4th wave begins, it's time to hold some of those humans to account.

Stay tuned.

Part IV: Reflections on the Second Wave: A Feminist Journalist Remembers Herself

The Third Wave took the Second Wave discourse on power and gave it a hard twist. Third Wave activists looked askance at the institutional power that had been gathered by Second Wave feminists as they built shelters, rape crisis centers, abortion clinics, legal aid clinics to serve women suffering in a misogynist world. Third Wave feminists insisted on the handover of this sort of power acquired by "women of white skinned privilege," as many Second Wave feminists came to be called, to women of colour. This notion of "white skinned privilege" struck me as plain bizarre when I first heard the phrase used at a women's conference financed by the Government of Canada. I thought it was a truly weird form of inverse racism, a divisive idea at odds with the feminist ideal of a sisterhood that includes all women regardless of class, race, or religious inclinations. I could not see how applying preference and deference by race would help anyone. Aside from the fact that the whole concept of race has no scientific validity--just appalling social power-- I also could not see how this "white skinned privilege" applied to me. I am Jewish, and for a large part of the last century, Jews were considered a race apart, not white at all.  (As we have learned recently, white supremacists still insist that Jews are a race apart and shall not "replace them".) I didn't feel privileged, I felt as if I'd earned my way.

And yet: I had clearly acquired privilege, like so many of my peers all of whom were "white." The friends I grew up with had acquired professional credentials or gone to graduate schools and carved out careers for themselves with significant hope of achievement and recognition. Yes, we all had stories to tell about the jerks at the office who thought our bodies were theirs to manhandle. Yes, we could regale each other with hard truths about the boss who refused to pay to us what was being paid to a man doing the same job on the grounds that the man was married. As if marital status mattered a damn to the work done. Yes, we all experienced making an argument in a meeting that wasn't heard or acknowledged until a man repeated it-- as if it was his idea. Yes, we had all experienced a sense of encroaching danger when walking by a man on any urban street at night. But I was also one of Maryon Kantaroff's ambitious women, born lucky into a middle class family that educated me, with a mother pleased to see me use my talents, and all women did not have that experience. The magazine that most allowed me to invent myself as a writer, City Woman, aimed its ads at women like us. I was not seen as a woman of colour when I went out in the world, so: I wasn't routinely followed to make sure I wasn't shoplifting as I walked through a supermarket or a clothing store; I wasn't selected for arrest if I participated in a demonstration because of the tilt of my eyes of the nap in my hair; I wasn't stopped and asked to show my driver's license and ownership while driving because of how I looked.

As barriers fell, and we climbed up, my friends and I, getting closer and closer to those who exercised real power, closer and closer to achieving our ambitions, it was easy to forget that we were leaving sisters behind. Nothing better illustrates where our ambitions took us--took me--than what happened when Judy Chicago's Dinner Party came to Toronto.

The Dinner Party is a fascinating visual argument about how women artists' works were ignored by the male art world even as their talents were taken advantage of. It was shown at various galleries across North America in the late 1970s, and Chicago published an art book to go with it. Leading male art critics pissed all over the Dinner Party. The New York Times' critic called it vulgar. But museum goers loved it and turned it into a major gallery money maker. Fifty thousand people went to see it when it came to Toronto's Art Gallery of Ontario.

Branching Out reviewed the book. Broadside reviewed the show. Both found considerable fault. In her "scathing" review of the book, entitled "Vaginal Hype," author Cathy Hobart declared she had spent four days visiting Chicago's studio which she accused Chicago of running like a sweatshop. In Broadside, Susan Crean critiqued the show on the grounds that a fee was charged, that the iconography was too obscure and the artists referenced too unknown to mean anything to anyone unless they paid for the guide, and that "nine of the 13 guests on the third side of the triangular table are American and all but Sacajawca and Sojourner Truth are white, middle class artists and social reformers." The point, said Crean, is that "Chicago's politics are not particularly radical. Her visualization of feminism, rhetoric aside, fits right in with the trendy notions of 'liberated' upper class matrons."

City Woman also ran a story on Judy Chicago and The Dinner Party, written by Natalie Veiner Freeman who helped bring the show to the Art Gallery of Ontario. Veiner Freeman definitely fit anyone's idea of "upper class." She was from a wealthy family and was the spouse of Senator Jack Austin, then a member of Pierre Trudeau's cabinet and inner circle. The night before the show opened in Toronto, Veiner Freeman organized a dinner party to celebrate it. It was held in an empty house rented for the occasion with a marquee attached. Judy Chicago was her honoured guest. So was Prime Minister Pierre Trudeau who arrived in a limo with Sylvia Tyson as his date. Maurice Strong, the founder of PetroCanada among so many other achievements, came too, and read contracts all night. Other guests included Adrienne Clarkson and her partner, author John Ralston Saul, who had worked with Strong at PetroCanada; Margaret Atwood and her partner, author Graeme Gibson; the Editor of City Woman and her then beau; my husband (ordered to keep his mouth zippered as Trudeau knew him all too well from his days on W-5), and me. We all got a private preview of The Dinner Party with Judy Chicago explaining it to us, just us, no line-up, no crowds. As we walked around her three tables, the Prime Minister and Sylvia Tyson went first with Chicago, followed by Adrienne Clarkson, then a national television star who, in twenty years, would be the first woman of colour appointed Governor General, and Margaret Atwood, already Margaret Atwood though The Handmaid's Tale had not yet emerged from that fertile brain. The two of them walked side by side, they'd been friends for years. The rest of us fell in behind, our positions in the line emblematic of the gradations of social power. Back at the house, Veiner Freeman's dinner tables had been set up like those of The Dinner Party. There were a few small plaster sculptures of black jockeys in livery set out at the door and near the tables, the kind seen on front lawns in the deep South, as if to suggest we were in some southern ante-bellum mansion.

I learned something that night-- that feminists and journalists must never get cosy with the powerful. It makes us forget where we've come from, it makes us susceptible to inappropriate demands, it makes us blind even to our own interests.

It was exclusion from this sort of power that made women of colour demand that white middle class feminists step back from the organizations they'd founded, and hand them over. It was exclusion from government grants in favour of immigrant and black women which made the collective that published Broadside hand the magazine over at the end of 1989. As Masters explained at the time:

"The government's supposed commitment to funding 'doubly disadvantaged' groups (Black women, immigrant women, visible minority women--though clearly not lesbian women) is a reflection of a social movement affecting all feminist groups in Canada. The most crucial aspect of feminism in the past few years has been the efforts to incorporate anti- racist perspectives into feminist practice and analysis. White women have been forced to deal with the issues raised, forced to face the fact that it may no longer be the role of White women to frame the debate and direct the struggle. With the growth of global feminism in the past decade, White feminists are no longer the majority if they ever were."

It was not, Masters continued, that women of colour did not share the issues Broadside covered (which she lists as violence against women, pornography, and, oddly, nuclear arms), it was that Broadside's White lesbian collective had a lopsided view of things, given its makeup, even though it had tried to be anti-racist. The collective, she said, had negotiated with the Black Women's Collective to send their own offering, Our Lives, to Broadside's subscribers instead of giving them their money back. Broadside was therefore folding, but not feminism, Masters insisted.

In this Masters was also wrong: Second Wave feminism, in particular its ideal of sisterhood, was folding. And that too had been signaled in major media first.

At the end of 1988, writer Marlene Nourbese Philip, a woman of colour, picketed as racist an international PEN Congress attended by writers from all over the world. Author June Callwood, one of Toronto's leading White feminists, was then president of the Canadian PEN chapter and had organized that event. On her way home after it was over, the sight of Nourbese Philip with her sign made Callwood so mad she told her to fuck off. The story made the Globe and Mail. Callwood quit the paper, where she was "un-fireable," to save it from the problem of her presence. Three years later, Callwood was again pushed to resign from the board of Nellie's, a feminist women's shelter she'd helped found, not long after Prime Minister Mulroney named Callwood to a blue ribbon panel to convince Canadians to vote in favour of the Charlottetown Accord in a national constitutional referendum. NAC, then led by Judy Rebick, a Trotskyite who had worked on behalf of Morgenthaler when he was criminally charged for performing abortions, and then as an NDP activist, was opposed to the Accord. A group of Black women, some also NDP activitsts, moved in on Nellie's, getting themselves appointed to its egalitarian staff and board. At one memorable board meeting one of them called Callwood a racist and out the door she went again. I wrote a long story about the who, what, where, and why, for Toronto Life. While it was hard to get the women involved to talk to me ( mainstream press after all) I eventually found that the motive behind Callwood's ejection was that her absence made it easier to take control of Nellie's, attractive due to its institutional power (not to mention $600,000 squirreled away in its bank account through curious means.) For putting this story in print, Toronto Life was picketed, scaring the crap out of the woman running reception. Judy Rebick wrote a letter of complaint to the Editor. Failing to mention that she had known me for twenty-five years, that we had lived in that commune together for some of those years, she referred to my work as the worst example of yellow journalism she'd ever seen in the mainstream press. 

So much for sisterhood.

Field Notes from a Medicare Disaster: Sixteen

The day he came home is a blur. Yet I have one strong recollection--like an overhead shot taken from a room above Providence's main door-- of me standing outside at the curb in the brisk morning air as they loaded him on a gurney into a medical transport van. There is a bright red jacket in this image yet I am not certain whether he wore it or I did. This obliteration of boundaries happens all the time when one has been part of a couple for more than 50 years. His body becomes yours, his memories are events that happened to you, and vice versa. I think I was elated but maybe that emotion was his. It's more in keeping with his nature. It's more likely I was anxious.

They bumped him in a transfer chair up the front steps to the house and into the front hall. They also brought home his wheelchair while I brought the metal walker I'd purchased for him at Providence in our car. They helped him get to the stairlift and he rode it up to the second floor. It was hard for him to get settled on its chair, hard to put his feet in the right place on the fold down platform, hard to learn how to use the controller that sends the chair up or down, hard to change the chair's orientation, to make the seat-belt work. It was even harder to remember how to turn the damn thing on after we inadvertently turned it off. With each mistake, I panicked. What if I couldn't get the stairlift going again? He'd be stranded. I probably phoned the company that installed it five times over the next three days. Yet the stairlift worked well, it was me who kept screwing up. And the bathroom was fine too, all the handholds were exactly where they needed to be, there was plenty of room for a big man using a walker.

He'd been away for two and a half months. In the US, if he'd been ill in hospital that long without sufficient insurance we'd be bankrupt. Give thanks for where you had the good sense to be born, I wanted to shout. Dad, you were right but also wrong.

 My guy seemed pleased to be home.

The first night, I didn't sleep much, listening in case he needed help. And he did.

The next morning, the first of a series of personal support workers arrived at about 8 in the morning, sent by the Local Integrated Health Network's contracted supplier of home care. A worker was supposed to come every morning for the next week to help get him up and dressed. He was entitled to one hour of care (which in real time as opposed to care time is no more than 45 minutes because 15 minutes of each hour is travel time). During that week, my guy would also be assessed by senior coordinators who would determine his actual allotment of publicly-funded care and the duration of same. It didn't matter what some doctor or hospital physiotherapist had to say about his needs, the LIHN makes its own decisions. He was in no condition to be left alone in the house, yet in that first schedule no time was allotted for me to go out for simple things like groceries.

The city is divided into regions each served by a single contracted supplier of public home care--they employ RNs, practical nurses, physiotherapists, occupational therapists, personal support workers. They are supervised by the district LIHN's care coordinators. You'd better get on well with them unless you have sufficient funds to hire private care. (The cost of private help is about $100 for a minimum of four hours. Personal service workers do not get paid $25 an hour, though they clearly deserve it. Their cut of the private take is just a tad higher than minimum wage.) I'd had a few run ins with the care coordinators of the home care supplier in my mother's district. There were many, many failures to arrive on time, and failures to assist her private caregiver as required by their own determination of her needs. I'd become used to dealing with that sort of trouble: I had learned to keep asking for the supervisor, and then the supervisor of the supervisor, going all the way up the food chain until I got to the CEO. This is not easy. Staff members don't want to attract the attention of the CEO when a complaint is involved. Yet CEO's of organizations delivering publicly funded home care generally like to keep their clients happy, and are determined to prevent them from running to the LIHN or the Ministry of Health to complain. Journalists are good at getting through the bureaucratic spread-the-responsibility-so-no-one has-to-fix-anything evasive maneuvers that result. So it's those not so good at raising a ruckus who suffer when things go wrong. As they did, and right from the start.

The LIHN's assessment personnel had been to see my guy after his previous hospitalizations, had ordered physiotherapy for a few weeks after the last concussion.  They had been notified by Providence to reopen his files and had made appointments with me to come to see him again. I remembered the occupational therapist very well, a cheerful, bright woman very determined to work the system as hard as possible to get her clients as much help as possible. The LIHN's overall care coordinator was not so cheerful, more soulful, but very able and equally determined to help as best she could. The level of help we would get would depend on their professional judgement leavened by the available budget, a budget which has barely moved over the last ten years in spite of a 40% growth in demand for help in the last five years. That budget had already been stretched to the break point by late spring because 2017/2018 was a bad flu season. Did he need physio? I thought that was obvious. At Providence they thought it was obvious too. Our doctor asked for it.  Yet the LIHN could refuse it. Did he need a specially measured walker, a specially designed wheelchair? Did he need a wheelchair at all? The wheelchair became a matter of  contention. If he was able to walk a little and wasn't sitting in it all day, why did he need one specially designed to fit his body? The need to use it outside didn't matter. He could have an ordinary wheelchair for that. The one he'd been sent home with was really expensive.

In my area, public home care is provided by a non profit affiliated with a downtown teaching hospital. In the daily forty-five minute period actually allotted to him, the personal support worker assigned to him by that organization was expected to help him get out of bed, get to the bathroom and to the shower bench where he would wash, shave, and dress, then help him get to wherever he was having his breakfast. They were also tasked to make the bed, carry down the dirty laundry or any garbage.  I only repeat what their orders said: I know because I was given a copy.

But that's not what happened.

The first morning a tiny woman knocked on the door. She was late yet actually on time, as is explained on the non profit's voice message system when you call in to find out where the hell your worker is. On time means 15 minutes on either side of the appointed hour.  I had to give her a short lecture on my guy's condition, because she knew nothing about him when she arrived, and to explain what she could expect given his unnamed disorder, how to use the new shower without getting soaked herself, where his clothes were, and his shaving equipment. She had arrived without plastic shoe protectors so I had to tell her to take her shoes off to use the shower. She didn't like that. She looked at my guy with something akin to fear. She said she did not shave people: she said she was not allowed to. So after I showered him, with her looking on, I shaved him too. She helped him get dressed, took a poor stab at the bed-making which I decided then and there I would do myself, left the laundry and the garbage disposal to me, and went on to her next client. I got on the phone and explained to the supplier's care coordinator that we were going to need a man or woman big enough to help my guy, that the small woman they had sent had quite obviously been afraid, and perhaps did not have the necessary skills to deal with a big man with movement issues on a damp floor.

The young care coordinator, a woman who spoke extremely quickly on her voice mail message, as if seriously pressed for time yet also sad and tired, said there weren't many men available, that would be a problem.

I explained that they'd have to dig up someone big enough somewhere, or there would be an accident. I explained I had ended up doing most of the showering. And the shaving.

The next day, they sent a man.  Again, I had to explain my guy's condition, had to explain about his slow movements, had to make sure the worker learned how to use the shower without getting soaked himself. This worker also said he was not allowed to shave anyone. So I did it. And I made the bed, and took down the laundry, and the garbage, and brought up the breakfast.

The next day again someone new arrived--a woman. Once again, I had to train her in my guy's issues, to make sure he got safely into the shower, to make sure she learned how to use it without getting soaked. Again, this person said she was not allowed to shave him. So I did it.

By the fourth day I was beginning to wonder why they sent anyone at all since I was either doing the work or supervising it.  While they stood behind him watching him struggle to the bathroom, I was making the bed, fishing out his clothes, then running to the shower whenever the worker called for help. Which was frequent.

On the fifth day, no one came. When I called in, I was told the worker, yet another new one, was going to be late, very late, more than an hour late. I told the care coordinator to tell that worker not to bother, I wasn't going to leave him lying in bed that long. That was the morning I discovered that I could do everything that needed doing, including showering him myself and that he preferred that I do it. And why wouldn't he? Four mornings in a row he'd had to stand stark naked in front of total strangers as they washed him. My guy is not shy. But many people are. (If it had been me, I would have said I don't care how dangerous it is I'm going to shower myself, you wait outside.) There was no time for him to get to know these people, unlike at Providence where the same small group of nurses helped him every day. I wondered: how upset would a person with Alzheimer's or some other form of dementia become when faced every day with strangers yanking them out of bed and pulling their clothes off?

And yet, looked at from the worker's point of view, they had more to complain about. Every new client was a steep learning curve. The fact that they managed to address each person's needs at all was a testament to their adaptability.  Almost all were new immigrants, most with very different styles of life in their former countries. In this job, they were poorly paid members of the precariat. They were under constant stress to get on to the next client waiting in the queue.  They had to arrive on time, leave on time, get to the next household on time and a lot of them did it for 10 hours a day, six days a week, if their employer asked them to. This would be barely manageable even if all the clients were mobile and didn't hold them up. One slow poke would blow the whole schedule. Toronto traffic is so bad that getting from one point to another on time is more than difficult. In small communities up north, the geographic range covered by personal service workers can be very large. My guy is a terrible challenge to this system. A movement disorder means he can be extremely slow getting from bed to shower and out again. Rushing will end in disaster. Forty-five minutes is not time enough to get it all done. If my guy was having a slow morning, and he has plenty of slow mornings, though they tried to conceal it most workers became agitated, keeping careful eye on their watches, which bothered him. Being a nice guy, he tried to send them on their way early, even if they weren't done.

That morning, I was tempted to tell the LIHN to forget sending workers, we'll manage ourselves. Yet I didn't. After only a week of being on call 24 hours a day, I knew I would buckle under the strain without help. Not only was I doing most of the work of caring for him, I was doing all the meals, the clean ups, the laundry, helping with his business, doing my own.  And somehow I had to get out of the house to get food.

So I kept my mouth shut.

The two senior care coordinators came separately to see him. They had both assessed my guy before. They were amazed that his parkinsonian syndrome diagnosis had been chucked out, that he was no longer on any medication, that without the Sinamet he was actually improving. This never happens to my clients, cried the occupational therapist, this is thrilling!  The other coordinator was so happy to see him doing better without medication that she promised to speak to the lead physiotherapist and beg him to send help. But she also warned me. She said: you know the people they'll send are fresh out of school and won't have much experience with neurodegenerative disorders, but I'll try to get it done. And she did. She also ordered 10 hours a week of care for the next five months, including three hours on Friday afternoons so I could do grocery shopping. But none of that dealt with the real problem, the never-ending turnover of workers, the daily need to train a new person.

The film crew arrived and shot their film ( he performed almost as well as he used to when he was an on-camera public affairs TV reporter/director years ago). By then, the junior care coordinator had sent in a new personal support worker each day for eight straight days. After the film crew went home, I got on the phone and raised hell.






I know what you're thinking: how dare you complain about a publicly funded system that cares for a person in hospital, and then, after the patient is sent home, provides trained people with real skills to come to the door to make sure that patient is properly washed, dressed, fed and any wounds attended to. It is a testament to this society's determination to take care of everybody that we have such a system at all.

But even the most well-meaning systems can break down, especially when starved of funds year after year, as the home care system has been.  And because it is starved, people who might have managed well at home if they'd been attended to sufficiently, end up back in an acute care hospital or in longterm care both of which cost a hell of a lot more. The home care system was invented to take the pressure off both, not to be part of a revolving door problem in which sick people are sent home from hospital too early and either end up right back on a ward, or permanently warehoused in long term care places so understaffed that someone like Wettlaufer can go undetected for years.

When I picked up the phone to complain, it wasn't just about helping him, it was about saving me. I had finally understood that if this pace kept up, and I got sick from overwork and lack of sleep, we would be in a disastrous situation.

I forced myself up the hierarchy of the home care provider, starting with the junior care coordinator who got the brunt of my rage, a blast sufficient to make her cry which made me ashamed. I was passed to a supervisor, and from there to another, and with each handover I kept saying: are you the CEO? No? That's who I must speak with. Finally I got a call back from a young man. He asked what I was calling about. I said: are you the CEO? No, he said, he was the CEO's assistant. I want to speak to the CEO not to you, I said. I need to speak to the person responsible for this system. I am a journalist and this experience has been so bad that I am going to have to write about it.

Lo and behold--the CEO herself called me back the next day.

After I explained what we'd been dealing with---eight straight days of new faces, eight straight days of me training each caregiver, eight days of no phone calls when the caregiver was going to be late, but with me having to call in to find out if someone was coming, eight days of carrying down the laundry, the garbage, making the bed, supervising the showering and doing the shaving-- I said I had had enough. I said this was a completely incompetent way to manage a home care system and I wasn't going to stand for it. And I was going to write about it.

She apologized. She told me stories of what happened when her own mother needed care, how she herself, for many years an RN, had been helpless to get the help she knew her mother needed. She sent me documents demonstrating plateaued funding in the face of the growth of demand, lobbyist papers arguing for more investment in home care, as opposed to hospital care. One pointed out that there might be a strike of personal care workers in Ontario this fall-- because personal support workers are getting unionized and a first collective agreement is being negotiated. Inevitably, and appropriately, labour costs were going to go up.

She promised that her organization would try to do better, starting with a meeting of  coordinators at our house. An RN would come along with them.

When they arrived, they trooped up to my guy's office.  At first they were defensive as I told them what had been going on. They weren't happy to hear it. When I told them I didn't blame them, I just wanted to know how it could be fixed, they promised changes would be made, that my guy would be assigned the same workers who would be instructed to call when they were going to be late or early, who would be instructed to provide the services required.  He would not have to face strangers every morning anymore, and I would not need to instruct on a daily basis.

I said fine, but I'm still going to write about this.

I could see they were actually pleased by that. Why? Because they don't like being unable to deliver, they don't like having to say no to the provision of care they believe will prevent their clients from relapsing,  they don't like having to ration what they know is essential. They wanted someone on the outside to shake the politicians' cages, to get things moving, to raise Cain, to get more money from the public purse spent where it's really needed, not wasted on some shiny atrium with a shiny donor plaque on a shiny new hospital filled to the brim with patients but chronically understaffed. The medical system is a human endeavor.  Machines are well and good, but without sufficient humans to manage and deliver care, they are useless.The people who provide care deserve to be properly paid and to work reasonable hours. They should not have to struggle through terrible schedules in order to make a living.

In the end, I found myself thinking the only reason this system works at all is because of the determination of the individual caregivers who try to make a go of it no matter what.

Unfortunately, and yet predictably (my Dad did predict it and he was not alone) no matter what is what we've got.

Field Notes from a Medicare Disaster: Fourteen

As the days and weeks went by, my guy made slow-- achingly slow-- progress. Context is everything:  he'd arrived at Providence unable to even turn himself in his bed, so it was great progress when he got to his feet in the gym (okay, yes there were two physios on either side of him, and he was holding on to a walker with white knuckles, but still).  It was also progress when, with the aid of what is called a saskapole, he was able to pull himself on and off his bed and into and out of a wheelchair using his own muscle power instead of the Hoyer (something he began to do not long after they stopped the laxatives he didn't need and the blood pressure drug that made him dizzy). When the saskapole was first put up in his room, at his insistence, but against the better judgement of his physiotherapist, he got cocky and tried to use it without a helper: he ended up sliding to the ground like a talent-free pole dancer while his roommate pressed the help button.

Gradually, he began to take over more of his own care, shaving himself, washing himself in the shower, achievements proudly reported by his nurses (he put on his socks today!) who were great cheerleaders. But there was no hiding where everyone at Providence thought he would get to in the long run: the occupational therapist wanted us to order a wheelchair designed just for him because that was his future. What else to expect with the diagnosis of a neurodegenerative disease?  There could only be regression. He would never be as able as he'd been before he got the flu when he'd climbed up and down the stairs several times a day, and did it more easily than walking. They wanted to teach him how to "walk" in a wheelchair using his heels and legs to pull himself along, rather than his arms. The lead physiotherapist had a theory that relying on his strong upper body was a mistake, that he should work hard to rebuild his legs. And this turned out to be the correct strategy, as you will see, though the results would surprise her. I measured the door openings at home to make sure the bathroom reno would permit a wheelchair or commode chair to roll in and out and ordered two stair-lifts, one to an outside door, one to the second floor, because, so far as the physiotherapist and the occupational therapist were concerned, there was no way in hell he'd be able to climb or descend our stairs again. It was suggested that we might need a saskapole by the bed and in the bathroom too.

In other words, as a friend of mine who died young from a medical error used to say: situation bleak.

And yet: as I ran around doing the things that needed doing I refused to dwell on bleak. The fact is I didn't really believe the diagnosis and so I didn't really believe the prognosis either. But truth is more than facts. The truth is I could not get my head around the notion that he would not improve. And neither could he. We have both spent our lives doggedly working at difficult problems until we conquered them or failed with honor. The belief in the inevitability of progress through hard work is a habit of mind rooted deep in both our childhoods. ("Just put your head down and bull your way through," my Dad used to say. "If at first you don't succeed, try, try and try again," his Mom used to say.) We could not just shake off our belief in that belief. and besides; he was improving daily, if only in tiny increments. There were good days and bad. First he had a good day followed by a bad. Then he had two good days followed by a bad. We thought he could do stairs again, that he would do stairs again if they would just let him try. But they didn't want him to try, not without big people standing by. We didn't see the virtue of building the legs and letting the arms go to rack and ruin: we asked if he could do weights. No, they didn't want him doing that either.

We were directed instead to practice using the wheelchair, and later, getting in and out of a stairlift.  Providence has a small stairlift set up on a short staircase in a big room on the basement level of the main building. He practiced getting out of the wheelchair, using a walker, and then getting himself on and off the stairlift. It went well. He smiled and waved like the Queen as he sailed up and down again.

One day, the wheelchair people brought in a snazzy one for him to try, much lighter than the generic wheelchair he'd been using, with cushioning designed specifically for him. I had to learn how to disassemble and reassemble it in order to get it in and out of a car. But at least I could lift it. Standard wheelchairs are very heavy. The company that would actually supply it, with a government subsidy of 85% of its cost if the Local Health Integration Network officials approved (not a forgone conclusion as I would discover), is also a listed supplier of other needs like handholds to screw into door frames, like commode chairs that can roll right into and out of a shower, like a saskapole. Each for a price. A hefty price. The wheelchair, even with the subsidy, had a really hefty price. People who have no money do the same thing with these devices that they do with prescriptions for medications they cannot afford: they don't order them. The medical aid business is growing almost as fast as funeral homes what with baby boomers learning first hand that aging is not for the faint of heart and that death, unlike taxes, actually is inevitable. (Taxes, as the rich know, can be avoided by means of incorporated shell companies in tax havens where the sun always shines.)

About two and a half weeks after he was admitted to Providence, the social worker on his floor made an appointment to discuss his discharge date. They wanted him out by the 23rd of March, one month after he was admitted. That discharge date had been on the weekly schedule set out on his bedside table as soon as he arrived, long before anyone knew what his rate of recovery might be. Apparently, they intended to stick to it come hell or high water. I explained that the bathroom reno might take more time, and he couldn't come home if he had no bathroom. Similarly, we had to wait for the stairlift which had not yet arrived from Britain. Also, I told her I wasn't sure how I was going to manage even with the finished bathroom and a stairlift. He needed help with everything from getting to the bathroom to dressing to getting to bed. While I could screw handholds to door frames so he could haul himself where he needed to go, there were no young nursing students available at our house to lend a hand when needed. I work, I explained. I cannot be a full-time nurse.

I wasn't to worry about that, she said, help would be made available through the Local Integrated Health Network. But not for more than 45 minutes a day if my mother's experience was any guide, I said. I  begged for at least another week past the original discharge date. I had no idea that begging was not necessary: I could have simply refused that date and refused any transfer to another facility, and they would have had to accommodate us, as the story below makes clear. I explained to the social worker that a film crew was coming to shoot a film on him at the end of the month, so would it okay if they shot it at Providence ?

They had never had such a request before, permission had to be sought, she said. The care coordinator seemed particularly pleased at the prospect.

In the meantime, roommate John was going home on weekends, although his blood pressure was being driven up by stress at home. We heard all about the problems of his life, just as he heard all about ours. One day I arrived to find his wife very upset. She was an admirable woman in many ways, not least because her fingernails were always perfect in spite of the hard work she did all day. She wore her hair in a ponytail and dressed in oversized sweatshirts as if in her own mind she was still a lithe teenager hanging out with friends after class. She was feisty. She was kind. She was smart. She was running herself into the ground trying to take care of everything and everyone she cared about. She said John was going to be moved to another room down the hall, a three bed room. He was unhappy about it. I was unhappy to hear it. He and my guy had each other's backs, for one thing. Our families enjoyed each other's company for another.

Why? I asked

A man with insurance entitling him to a two bed room is getting this bed, said his wife.

But we don't have insurance either, I said.

A rebellious/defeated look flashed across her face. It said, without words, that the haves are always treated better than the have-nots in our everyone-is-equal medicare system, and that she and John are have-nots. When John got back from physio he said that if he didn't like the new room, he'd just go home and not come back.

A few nights after John moved, my guy was awakened by a bedlam of grown men bellowing at each other.  Apparently John had come in late and turned on his bed light which disturbed the man in the bed next to him, a man who had been in that bed for no less than two years, a man who steadfastly refused to be discharged from Providence and gave new meaning to the word difficult. When I stuck my head in to see how John was doing the next day I found him in a dark and crowded space. He said he was doing fine. I said I'd heard he'd been in a fight. He grinned and said he liked a fight. Not good for the blood pressure, I said. Yeah sure, he said. Did I know the long wait for help between 4 and 11 p.m. was happening again? He couldn't understand why. The fix was so simple and wouldn't cost Providence a nickle. They just needed to bring on a second shift of nursing students between 4 and 11. Nursing students must do rotations in hospitals as part of their course work. There were more than enough students to go around.

Brilliant, I said, I'll go and suggest it to the care coordinator.

So I hunted down the care coordinator and gave her John's suggestion.

Great minds think alike, she said, we've just started to move on that. Would you like to be on a community advisory committee?

I don't live in this community, I said, and besides, it was John's idea. Why don't you invite him?

Her blank face made it clear she had no interest in John at all. I'll think about that, she said.

She may have thought, but so far as I know, she did not invite.

I arrived one morning to find the new roommate on John's former side of the room, a man in his early fifties. Call him Tom. He was sitting in a wheelchair beside his bed, staring at nothing. His TV was not turned on: it was broken and no one had come to fix it. He had no reading material. He had spectacular tats that run up and down both arms and across his chest, the kind seen on made members of the Russian Mafiya. As he was wearing basketball shorts and a sleeveless shirt they were on full display. I wanted to ask him about them and about his life in general but he'd had a stroke that was so bad he could not speak. He could barely swallow: the speech language pathology people kept bringing him jellied liquids instead of water to drink, though his lunch tray had had things on it that he shouldn't have had. When his meals came, he choked, and choked, and choked, sending me running down the hall repeatedly to find a nurse to clear his airway. As we would learn, he had been in this state for months, first at another rehab hospital, then at home. He'd spent most of the last year on a bed set up in the family room.

I didn't see any of his family for some days. I wondered, at first, if he had one.

Then his wife appeared one afternoon with his mother. Their problems made ours look small. First, they don't live in Toronto but in a smaller town east of the city. Tom's wife looked significantly older than her years. Short, spikey hair, makeup to hide exhausted eyes or at least to avert attention from them, a tad overweight, desk-bound overweight. As long as she was in the room she never stopped fussing over him: he hadn't shaved, hadn't had a shower, she determined these things asking him yes or no questions which he answered by affirmative or negative nods. She spoke in a loud voice, an irritated voice which I recognized because the same voice kept emerging from my own mouth whenever I came in and found my guy in bed, or his physio cancelled. She had found Tom in need of changing so she went charging down the hall looking for his nurse. I'd grown less angry about that sort of thing, mainly because it happened less frequently than when my guy was first admitted. But Tom was new to Providence and she'd been managing his care to her own high standard at home for almost a year in spite of the fact that she also had a full time job as an investigator. She'd had their family room wired with video cameras so she could check on him from her desk at work.

Her husband, she explained when she came back, had been an undercover cop for years, on a drugs and gangs beat, which is why he had those tats, and probably why he'd had the stroke, it was all those years of unbelievable stress, of living a lie every day and wondering when the people he was setting up to be arrested would figure that out and kill him.

His mother, a sweet woman with a June Cleaver face told me later, while Tom was off in the gym, that Tom had been athletic all his life, played every sport there is, and that after his stroke made it impossible for him to walk, let alone run, he'd just cried, and cried. You mean he felt defeated? I asked. I could see that some days he refused physio and just stared at the TV. Yet as the days went by, the physiotherapists helped him get better control of his body and the speech language pathologist taught him how to control his breathing so he could utter a few words.  Though his choking continued, the nurses taught him how to make it stop on his own.

As I watched his progress I began to think Providence was living up to its name.

 I arrived at Providence at 8:30 in the morning to take my guy to his appointment with the neurologist  at Michael Garron Hospital. His day nurse, a tiny woman who was fiercely attentive to her patients' needs, who did everything she could to make things go smoothly for them, had put him at the top of the shower list. Though I arrived early, he was ready to go.

I haven't said enough about the nurses at Providence, both male and female. There was a terrific male nurse who had been a doctor before he immigrated to Canada from Albania in order to better the lives of his children. He'd figured it was faster for him to get certified in Canada as an RN than to redo medical school and wait in line for a residency. So he had sacrificed himself, and yet he was not bitter. His children were doing very well at school, thank you. He made it his business to buck up the spirits of his patients whenever he could, especially the men who were so downhearted at the loss of their strength. When my guy pulled himself along in the wheelchair in the hall, he'd praise the smallest improvement. Then there was the tiny Philipina who had two children at home, but worked most days without stopping to sit down for lunch, worked until her skin took on a grey tinge from exhaustion, then went home and worked some more. And how about the woman from the Caribbean, tall, slim, who handled my guy without breaking a sweat, always with a kind word, always encouraging. And there were so many students who came, in their burgundy uniforms, from everywhere on earth, earnest young men from Pakistan, young women from Brazil, from Somalia, from Ethiopia, some wearing hijabs, some with their hair swinging free, all with that inner glow that comes from helping others, that comes from knowing you can. It's a noble calling, one of them said. I coudln't remember the last time anyone I knew used the word "noble" in conversation.

We went downstairs and out into the brisk morning air to wait for the wheelchair taxi which arrived exactly on time. The driver rolled him in his wheelchair through the van's back door, fastened his chair to the floor, and off we went.

The neurologist' s office was off a dark hall lined with patients filling all available chairs. The neurologist kept us waiting long past the appointment time, but I didn't worry because I had brought a Sinamet with me in case we had to wait past the time when he was supposed to take it.

The neurologist was a tall, lanky man in his middle forties. He made it clear right from the start that he would not be taking on my guy's case. I don't do Parkinson's, he said. But  perhaps we could tell him what had been going on?

We raced through the issues, explained that we'd had a problem with the neurologist assigned by St. Mike's, and gave him the whole story as quickly as we could.

Would you let me examine you, he asked.

That's why we're here, said my guy.

Carefully, slowly, he went through the same physical tests done by the neurological resident at St. Mike's which had produced a diagnosis of Parkinsonian syndrome.

"Well," he said. " I don't think it's Parkinson's or anything like it."

That's what the very first neurologist said, I said. He'd ruled it out. And the doctor at Providence said the same thing.  But if it isn't Parkinsonian syndrome, what is it?

"I have no idea," he said.

Well would you take me on, my guy asked. I like you.

No, he said.

Something made me wonder if he had tangled with our former neurologist, or had some fundamental disagreement with the way neurology is managed at St. Mike's

Would you care to comment on the fact that a resident made this diagnosis and the neurologist we were assigned is an epilepsy specialist?

No, he said.

Is this about medical politics? I asked.

I can't comment on that, he said.

Which was of course a non denial denial and in my world, the equivalent of a yes.

Well, what should we do? My guy asked.

I think we should do a test while you're at Providence with nurses and doctors to help you, where you're safe, he said.  I want to run an experiment.  Let's stop the Sinamet and see what happens. If you get worse, the original diagnosis might be correct.  If you don't, well....

You mean stop the pills right now?

That's right, he said.

Twenty four hours later I came to his room to find him sitting up in his chair with his ankle over his knee, the way he used to sit, but which he hadn't done for months and months. His voice was stronger, more his normal register. And there was something else, a brightness to him that I hadn't seen for a long time.

You're feeling better, I said.

Right, he said, with a grin.

When Daughter Number One came in she was astonished.

His voice, she said, the way he's sitting, the way he's talking, it's like Dad's back.

Exactly.