Digressions&Impressions

Covid Diaries: Covid Induced Migraine

It's time for another Covid Diaries update. (For my official "covid diaries," see here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here;  here; here, here; here; and here, and here).

 

It's been about a month since my last covid update. Unfortunately, the news is that it's been challenging. The last update coincided with the end of teaching and my return to London. And I figured that I would take ten days off, get back into a swimming routine, and then start working on some small projects before I would return to major research.

 

As you may recall I also saw the NHS long covid clinic neurologist, who diagnosed me with covid induced migraine. I have to admit that I was a bit surprised by her diagnosis because I thought my headaches were only triggered by social interactions beyond thirty minutes and i didn't have any other major characteristics of migraine. (In fact, the interactions first induce a weird fatigue and not always a headache.) On the other hand, she was optimistic I would continue to improve because on the whole I keep improving slowly.

 

But as it happened, my family left for a US trip and I was alone for a week without any social interactions at all (except very small talk at the swimming pool, supermarkt, and British Library). In their absence, I lost two days to debilitating headaches while they were away. Looking back over the month I have clocked six days of headaches--and my current best guess is that bad sleep and social interactions are possible triggers. I do find that days when I swim well and am well rested it's less likely to happen.

 

What's annoying about this is that in some respects the pattern of long covid has been that every two to three months the major symptoms shift. And this time is no different. Luckily on the non headache days I can swim, and do my reading and writing. But my social life is very limited, although my spouse has said I am in much better general mood than last year (which she takes as evidence that I am suffering much less). I still can't enjoy terraces, and even joint hiking. (There is a weird issue that walking and talking/coordinating with another while walking totally floors me--same with biking. It's as if cognitive load is too much.)

 

Unfortunately, the migraine meds I received have contraindications with pre-existing conditions/meds, so it's been a bit challenging to find the palliatives when the headaches hit. I know lots of people who manage migraines with varying degrees of success, so in a strange way I feel less alone with my condition. (It has made me wonder about the medical pathway from post-viral infection to migraine.)

 

Anyway, thanks to Federica Russo and Jean Wagemans, we finished one paper, and thanks to Nick Cowen we finished another. (Both under review.) And I wrote a book review. And then a week ago I did start my Foucault project, and while I lost one day through headaches, I have a nice writing rhythm and folks are even recognizing me again in the British Library. And I am really excited about the project--which started as a kind of therapy last year, but now feels like it might become a very neat book. I am lucky I have a work related passion that can be done in relative solitude for long chunks of time.

 

Before I left Amsterdam my occupational physician thought it was a good idea if I can figure out a research leave this Fall. So now I am in touch with various places which might sponsor a visit (you know who you are and I am very grateful for your help), so that I can take an unpaid leave. Hopefully I can sort something out that ticks various boxes and not be away from home too long.

 

That is it, I feel very grateful I have such supportive family, and the kind of job that is relatively secure and also so flexible now that teaching is done. I am still hoping that in six months i can attend workshops again and enjoy going out on dates with my better half, but I also thought that six months ago. So now I am mostly taking one day at a time.

Tremain on The Inductive Risks of Bioethics, Pt 1. (And *In the Shadow of Justice*, pt 4)

My argument is that the academic discipline of bioethics relies on an epistemology of domination and is an institutionalized vehicle for the biopolitics of our time, that is, bioethics is a technology of government that provides intellectual resources designed to facilitate the “strengthening” (read: fitness) of a certain population and the elimination of others. I submit, furthermore, that the implicit and explicit governmental tenor of bioethical inquiries and discussions contributes substantially to the hostile environment that disabled philosophers confront in philosophy.--Shelley L. Tremain (2017) Foucault and Feminist Philosophy of Disability (University of Michigan), 160-161.

As the quoted passage suggests, Tremain diagnoses two kinds of inductive risks from the way bioethics is practiced: (i) it is eugenic in character: it promotes the "elimination" of populations with characteristics thought undesirable; (ii) it creates a hostile work environment for disabled philosophers within professional philosophy. Today's post is focused on (i). For on her view, it is constitutive of bioethics to "posit conceptions of the normal from which the possibility and probability of deviations are measured and classified in order to prevent and control their actualization." (169) Within the discipline, the normal is taken to be an objective feature of reality (often understood as something statistical or species functional), and the deviations -- in particular below the norm -- are treated as objective defects or harms (or costly). Following Foucault, Tremain treats the disciplinary articulation of this conceptualization a step in what she calls 'normalization.'

For the articulation of these conceptualizations and their understanding as objective (social) facts constitute a field of inquiry and creates a discursive power with normative authority in the university, the hospital, and in wider society. More subtly, Tremain argues that normalization shapes, by various looping effects (Hacking's terminology) the self-conception of ordinary agents in society and the possibilities available to them as they make, what they take to be, autonomous choices. Such normalization becomes eugenic once it becomes constitutive of (autonomous) reproductive choices by individual would-be-parents and by social (and sometimes legally mandated) technologies of risk-management and prevention to facilitate the creation of populations without characteristics thought abnormal (defective, costly, or not conducive to full participation/cooperation in society, etc.).

Before I offer some critical reflections on Tremain's position, I want to note two things: first, I agree with Tremain that until quite recently contemporary bioethics (both in its Rawlsian and Utilitarian guise) is eugenic in character and that it has badly theorized -- mostly by ignoring -- the inductive risk of its own activity. In fact, while it councils 'do-no-harm' to medicine and patient autonomy, it has been long reluctant to explore the possible harm that is the possible effect of social and institutional uptake of normative theorizing. For most of my adult life, analytic applied ethicists simply disparage those disciplines (Critical X) where inductive risk is taken seriously (recall my criticism of Heath). In so far as it is agreed that normative theory has possible bad social effects that's never due to the theory itself, but only due to bad people or bad social implementation. The character of the foreseeable uptake of a theory is not treated as a legitimate (professional) evaluative feature of the theory.

Second, and only a partial aside, while Tremain uses a Foucauldian framework (and linguistic register) to analyze these features, it converges with the decidedly non-Foucauldian treatment of the development of applied ethics offered by Katherine Forrester's In the Shadow of Justice: Postwar Liberalism and the Remaking of Political Philosophy (recall here; here; and here). In particular, I want to highlight a structural feature of applied ethics, the significance of which only became clear to me while reading Tremain. Forrester notes that:

Applied ethics soon also encompassed medicine, law, and business. But the fact that moral thinking about war, with all its extremities and appeals to necessity, was one of the first test cases for applied ethics had a wider impact on the development of moral and political philosophy. Its focus on dramatic and extra ordinary moral choices was soon imported into other realms of inquiry. Crucially, it was imported back into the realm of domestic politics, which was turned into a case of its own: public morality.--Forrester In the Shadow of Justice, pp. 74-75 (emphasis added)

Appeals to the necessity of choosing function as a mechanism to prevent the development of questions about the proper form of thought and its institutional embeddedness. The focus on existential social choice facilitates the rise of casuistry without thinking through what the structure of the demand for casuistry does to the supply of ethical theory (as the worth having). (An analogous problem shows up in normative decision theory.) To simplify greatly, we saw the after-effects of this in the most recent pandemic: bioethicists were primed to discuss the rationing of medical care and the justification of vaccine requirements, but had little guidance to offer on how to think about the integration of many different kinds of fast moving (and sometimes still immature) sciences and the complex trade-offs of major social policies.  

Now, let me return to Tremain's analysis; it is important to recognize that normalization (mediated by various social and governmental practices) produces "people with certain kinds of subjectivities, that is, these practices have constituted subjects whose actions are governed through the exercise of their own capacity to choose in accordance with the norm(al)." (190) And while the structure of Tremain's argument is akin to an ideology critique, she recognizes that there is no sense in which she can claim that these subjects have "been duped by the ideological forces of some distant and overarching external power," nor is she in a position (as she admits) to claim "these subjects make morally bad personal decisions." (190) 

Tremain is a very clear writer, and she puts her assumptions and commitments transparently on the table: she is a nominalist, a historicist, and a relativist. And she makes clear that the problem with ("epistemological and ontological assumptions" embedded in) disciplinary practices that are invested in normalization is that "the potentially detrimental effects for disabled people" is ignored. (192; this is also true of embryo research.) Part of these detrimental effects are the widespread uptake of the thought that the disabled have "diminished lives" and so nudge (and legally facilitate) abortion, infanticide, and euthanasia of them. (200)*

I hinted above that I would offer a criticism. The problem is that acknowledging, even internalizing detrimental effects in a (bioethical) theory is neither necessary nor sufficient to undermine such a theory. Again, I draw on Forrester and the implication of appealing to necessity. It is characteristic of applied ethics to use "abstract, personal, and interpersonal modes of justification to explore the most concrete of existential questions of life, death, and killing— questions that continued to remain at the core of applied ethics." (82) To put the point starkly: the 'heroisms' of applied ethics is precisely its willingness to face up to the existential nature of its questions.** That something is eugenic and has harmful externalities is certainly something that -- once pointed out -- has to be faced, but with theoretical equanimity. 

I'll put the dilemma facing Tremain and her partisans as follows: because she is unwilling to develop a normative theory of her own that can meet contemporary applied ethics on its own terms (I almost wrote 'ethical battlefield' there), merely stating and naming, even unmasking, an inductive risk is not sufficient to change a disciplinary practice. If anything, once it is domesticated as inductive risk her insights can feed into other technologies of biopower. (So she may well rightly object to this whole post.) And because such domestication is always a live risk, Tremain is probably prudential in avoiding the development of a normative theory of her own. But as her own analysis shows, society will confer authority on normative theory (and as Forrester shows it will create all kinds of rewards for those who develop it 'best'), so avoiding the contamination of normative theory seems to consign oneself to political and professional wilderness. But that conclusion would be victim blaming, and to understand that we need to look more closely at (ii), the marginalization of disabled philosophers in the profession. To be continued.

 

Covid Diaries: Highs and Lows

It's time for another Covid Diaries update. (For my official "covid diaries," see here; here; here; here; here; here; here;  here;  here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here;  here; here, here; here; and here). It's been a complex few weeks for me.

 

I want to start with a tremendous high. Last Tuesday I taught the last session of my intro lecture course to an overflowing auditorium. (I have over 600 students, and all the lectures are recorded and available with a thirty second delay.) At the end of my lecture I tagged on a few minutes of quasi-impromptu remarks. I thanked them from the heart for their encouragement and kindness during the semester; that they respected my boundaries and were unfailingly kind about my invisible/cognitive disability. This generated a tremendous applause. And I joined in the cheer, applauding them.

 

I then added a few remarks on the significance of political theory and the course, and closed with a kind of blessing wishing them wisdom (etc.) What happened next was surreal (like in a Hollywood movie you don't believe); I received a standing ovation. Eventually I joked -- which is what I do when I feel uncomfortable, I guess -- that I would hand out signatures at the end of class. That got the applause to stop. But I was mobbed by students who gave me flowers, thank you cards, chocolates, drawings, and -- never make this joke again -- a long line of kidz who wanted signatures. This lasted an hour! (Students had applauded after each lecture, so I knew there was appreciation.) During all of this, I knew I was going well beyond my cognitive limits and that I would have to deal with headaches and nausea. I walked home, got soup, and tried to sleep.

 

The next morning I woke up with a headache (the worst of the 7 weeks of lecturing), and decided to take it easy. I watched the end of the lecture on video a few times enjoying the moments again, and checking my memory of the event. By the end of the afternoon I was much improved, and could enjoy early Spring.

 

I also received news from HR that I won my battle with them about back-pay for holiday-pay that they had deducted in virtue of my disability. After consulting the union and jurisprudence, I had pointed out to them that according to European jurisprudence that holiday is a human right and that you can't lose it even if disabled or sick. (I learned from the union, that they generally obtain the pay out on behalf of people who are let go in virtue of their disability at the end of the contract. But that people like me who might return to work often end up losing a few days of holiday pay.) HR granted that they have no right to withhold it over 2021 (especially because they had already agreed to pay out in 2022!).

 

Later that week, I had a meeting with my department chair that I initiated. Under Dutch disability rules, in a few months my occupational physician, an outside expert, the department, and myself have to decide about my future. It's pretty clear now that I won't recover fully in the next two months The department has been very supportive (I have a few minor kvetches), but in all the communication to me it's always been about hoping for full recovery. So, I wanted to know how the department views a future with me if I don't fully recover. The meeting was encouraging and constructive. The real key for the department will be whether I can return to non-lecture format teaching or not. There is a lot more to say about this meeting, but I felt reassured that there won't be an effort to push me out.

 

After that, I decided to return to London. But not before my sister taught me some meditation tricks, and my mom  delivered some fantastic chocolate cookies.

 

Over the week-end I arrived in London exhausted. And the first 72hrs were both joyous and challenging catching up with the family after nearly 8 weeks away (with just one week-end visit). I had non-stop headaches and nausea for a few days. And I am reminded of my limits after two months of near self-isolation. Basically my symptoms are under control unless I interact socially with others for more than twenty-five minutes. 

 

Today, I had a meeting with the neurologist in the NHS long covid center at UCLH. She was a very kind and thoughtful physician. (I also learned that I was initially slotted to be seen by her in October -- she remembered my dossier -- but because they got overwhelmed with emergency care, I got pushed back. ) After taking my history and doing some cognitive testing, and discussing the situation with me, she decided to treat my symptoms like a kind of migraine. (A big contrast to My Dutch neurologist.) Her hope is to get the headaches under control first, and that I will get better and better in social environments over time. (She was also happy to hear that I had no teaching for four months.) I ran a number of the Dutch occupational therapy treatments by her, and that was instructive, too. She didn't promise miracles, but assured me that people with my symptoms do recover even after a year plus. Also, it's so nice to have a neurologist that takes my covid problems seriously. (Yes, I am pissed off at my Dutch neurologist.)

 

Tomorrow, my students take their final exam, so I am hoping that this time next week, I can close the door on course related stuff for the academic year. (It's astonishing  how many logistical and other curve balls come your way when class size is this huge.) I have returned to my daily swim, and next week I return to my research. I also look forward to my regular blogging. I am still withdrawing from conferences and other events, but I am growing hopeful I can return to these later in the year.

Long Covid Diaries: On Victim Blaming

This past week, I started two new treatments: on the advice of the UCLH long haul clinic (in London), I started a nightly round of Famotidine. It's mostly used to treat acid indigestion (and related ailments). And when my Dutch pharmacist dispensed to me, she started to explain its use to that end. She was surprised I was prescribed it to treat my long covid. (For my official "covid diaries," see here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here;  here; here, here; and here). My Dutch GP, who is kept abreast of my treatment plans at UCLH long haul clinic by me thanks to a wonderful patient centered app the UCLH hospital used, commented that she thought the evidence was rather thin for the effectiveness of Famotidine in long haul. Since I had presumably looked at the very same studies as she had, I had to agree. When the physician at UCLH had suggested Famotidine to me, she said they were doing new trials -- I had been excluded from these because of a too recent booster -- and claimed they were finding that Famotidine was improving cognitive functioning by 20% or so. While a part of me was supremely curious about the measurement of that number, at over fourteen months of illness, I took a modest amount of hope over no hope of improvement. The underlying idea was that my immune system was generating some kind of inflammation.  I wondered whether the anti-histamine of Famotidine might help control the effects of my chronic sinusitis. 

In response to my very kind Dutch GP, I pointed out that the referral she had just written at behest of my occupational physician to start treatment with a 'neuro-psychologist' specializing in long covid, was for a treatment that had no known clinical efficacy for long covid. For, I was under the impression I was being referred for cognitive behavior therapy (CBT). My view was this was unlikely to help my particular symptoms, but I decided it was worth a try since (i) it might benefit me in other ways, and (ii) it was a good idea to be a cooperative patient of my occupational physician (who so far had been a reliable ally). After my intake meeting with the 'neuro-psychologist' a few weeks ago, I was a bit puzzled because she warned me that my treatment might last for one or two years; I always assumed CBT was favored by society because it was relatively brief (and so cheap). But this past week, I realized that CBT would be a minor part of my treatment--one might call it a façade for insurance purposes, but to do so would get someone in trouble. 

The underlying idea of Dutch occupational physicians is that long covid is primarily the effect of a stress system that is out of control. And this, in turn, is an effect of pre-existing conditions or life-style of those hit by long covid. (Since the Dutch university system is chronically underfunded and burn out a systemic problem in it, we should be hit by massive wave of long covid!) So, it's best tackled by a range of low key interventions like teaching patients how to medidate (via an app offered for free by a Dutch medical insurance company) and to re-acclimatize the brain to filtering out various noises. While undoubtedly earnestly felt by those who propagate it -- and a nice cover for complete unwillingness to research long covid by Dutch medical researchers --, it often comes across as victim blaming. (I first learned about it from a fellow long hauler, a high school friend, who is one of the most successful people in the Dutch art scene now, who was not amused.) My neuro-psychologist makes a great show not to blame me -- in fact she repeatedly praises me for life-style changes made during the first year of the pandemic --, but points out my problem is the effect of the accumulated stress of many years showing. I have decided that the best thing about learning mindfulness is to be steeled against this kind of talk, and that after all the British won WWI with a terrible theory of airplane flight (go read David Bloor's classic).

Anyway, my treatment is fairly straightforward: I have to meditate three times a day. One of these times should be after a ten minute period in which I try to work/read with some kind of noise or music in the background. This is to start getting my brain used to filtering out noises. In addition, I am not allowed to wear my noise canceling head-sets while walking about town. (We compromised that before my three remaining lectures I can do it.) I am also trying to reduce cortisol production, so I should avoid exercise that leaves me drained. (Luckily my kind of mellow lap swimming is permitted.) At my own initiative -- surely successful entrepreneurism improves well-being --, I have started to drink black teas, especially Lapsang Souchong, which has the best name and odor in Tea-land. Daily, I thank the heavens that my sense of smell is fine.

In reflecting on existing sources of stress, it occurred to me that that the possibility of an accidental nuclear war and, more prosaically, my uncertainty over my job future might not be trivial. But after meditating on it, I was also reminded of the hard work I had to put in to get some medical reimbursements -- the blood tests I discussed in my last covid diary still hasn't been paid yet --  and to get my university to pay up in various ways. At some point someone in HR decided that given European jurisprudence, the university was required to pay my vacation days in full. (Since I went on partial disability, they had been paying me in pro-rated fashion.) But unaccountably they decided they only had to do so in 2022 and not in 2021. Some correspondence with my chair and various people in HR ensued. I decided to consult my union and read up on the European and Dutch jurisprudence. Somewhat fascinatingly, vacation is treated as a human right in European labor law now, and so employers have to pay out vacation days in full. The union lawyer told me that Dutch jurisprudence had been settled on this quite a while now, and that their practice is to demand full pay-out once an employee can't continue in their job. I wrote a fine letter to HR, and eventually my chair informed that my asking for reasons had apparently caused a change in policy. (I should expect some modest back-pay in a month or two.)

Because I strictly control how many bureaucratic battles I fight per week, I have left the insurance claim for next week. I also have another bone to pick with the university because they refused to commit to paying any balance between what my insurer will cover for the neuro-psychologist and what she will charge. (They cover 100%, but that's 100% of the rate they want to cover.) I was surprised the university was unwilling to do so because the money involved would be modest, and we often pay for all kinds of coaching, mediation, and training (including stress management). And since the neuro-psychologist was prescribed by their own occupational physician, I thought my case would be strong. But I decided to wait with a new letter to HR until it's clear to me how much extra money we're talking about.

That's a let of set-up for the main business of this 'diary.' I have taught ten sessions now of my huge lecture course. I still have trouble falling asleep and sleeping after the lecture, but out of ten sessions, I have had real headaches only four times the next day. Most of the weirdness in my head is gone by the next afternoon. Since all restrictions have been lifted, the auditorium is now filled with students. They kindly wear masks on my behalf on the first three rows, and they send me super sweet messages of encouraged and gratitude. In turn, I adore performing my act for them, and while a part of me is horrified that I have become a figure of entertainment, I soak up the applause after each lecture. I'll be curious to see the evals, but I think it's probably the best cycle of the lecture course I have taught; because I don't try to entertain myself (and so avoid most of the improv shtick that confuses students), I follow the outline of my slides carefully--I have never received so much recurring feedback on how clear I am. If I wrote a private diary, I would have had an entry by now on how I became an analytic philosopher through long covid. Anyway, the good news is I am clearly much better than a few months ago, and I can imagine teaching more even with my current limitations.

I decided to go to London last week-end and visit my family who I had not seen for a month. Nobody had told my teenage son (who is decidedly taller than his mom now and only an inch smaller than I am), and the surprise and joy on his face when I opened the door was followed by a fantastic bear hug. While it was a sweet visit, I  learned that I am still fairly easily drained by non-stop interactions. By 'drained,' I mean I get my characteristic head-fatigue (from the nose up) and the start of a headache. So, I withdrew a few times into the bedroom and simply laid on the bed.  That helped.  At night I slept deeply and calmly alongside my better half.

Yesterday, I started the experiment with ten minutes of concentration alongside background noise. I went to my favorite espresso bar, and decided to read a book outside. Next to me was a guy talking loudly through his earbuds while I was trying to read a paper I was supposed to referee. I have to admit the guy's talk drove me batty. I lasted about eight minutes, and the nausea only dissipated after a half hour amble in the part. Even there the city's noises are never distant. With my noise canceling headsets therapeutically left at home, I already miss the quiet.

On Irresponsible Science Journalism: No, those studies do not show that a market in Wuhan was the source of the Coronavirus

International scientists on Saturday released two major studies which one participant said made it “extraordinarily clear” a market in Wuhan, China was the source of the coronavirus which fueled the Covid-19 pandemic – and not a Chinese government laboratory, a theory championed in the US by rightwing campaigners, columnists and politicians.

The question of where Covid-19 came from and how it spread has proved divisive...

In August last year, a US intelligence review of the issue proved inconclusive.

The New York Times first reported the new studies, which it said had not been published in any journal.--"Coronavirus came from Wuhan market and not Chinese lab, twin studies say"--The Guardian, 26 February, 2022. 

For those who may read my blog for the first time, I am not a rightwing campaigner.  I have been a critic of former President Trump since 2015. I am also not a virologist or epidemiologist, however, I am a philosopher of science and my original interest in the field is evidential arguments. I will suggest below that the claims in The Guardian and in The New York Times are examples of irresponsible and sloppy science journalism. Before I get to explaining why I think that, here is a flavor of The New York Times reporting:

The studies, which together span 150 pages, are a significant salvo in the debate over the beginnings of a pandemic that has killed nearly six million people across the world. The question of whether the outbreak began with a spillover from wildlife sold at the market, a leak from a Wuhan virology lab or some other event has given rise to pitched debates over how best to stop the next pandemic.

“When you look at all of the evidence together, it’s an extraordinarily clear picture that the pandemic started at the Huanan market,” said Michael Worobey, an evolutionary biologist at the University of Arizona and a co-author of both new studies.

Several independent scientists said that the studies, which have not yet been published in a scientific journal, presented a compelling and rigorous new analysis of available data. "New Research Points to Wuhan Market as Pandemic Origin" The New York Time, updated 27 February, 2022

One of the papers with the suggestive title "The Huanan market was the epicenter of SARS-CoV-2 emergence," is the main source of the claims reported by the The Guardian and The New York Times that I will argue are examples of irresponsible and sloppy science journalism. The paper, which I downloaded on February 27, and that I will be discussing can be found here. I heard about the paper through a tweet by Marion Koopmans shared by my colleague John Grin (since unshared after learning of my concerns below). Dr. Koopmans is a leading virologist and public health scientist in the Netherlands. Professor John Grin and I both work in a political science department; he is a former physicist, who works in public policy on issues related to transition economy. I consider both high quality sources of science related material. And so when I decided to read the paper, I assumed I would be convinced by the findings.

Michael Worobey (the lead author of the paper) and his colleagues have dome some impressive modeling and statistical analysis to argue that the source of the spread of the pandemic is probably to be found in the Wuhan market. The paper has, however, a peculiar step, which deserves some scrutiny, and which weakens the claims by the media that this article rules out a lab leak.

As is clear from the suggestive title of the paper and the media reporting I have quoted above, the political significance of this paper is it that it is presented as ruling out that the virus leaked out of the lab of the Wuhan CDC. Since outside access to it has been denied (here is the Guardian's reporting; here's the New York Times), this has generated concerns over a cover up.

What the media reporting fails to remark is that this possibility is addressed in only one sentence shown in a picture below.* 

So, naturally, I was curious to see what source (9) is. It's the Chinese CDC! (See the other picture.)

Now, clearly the authors of the report treat the Chinese CDC as a reliable source, and they may well have good reasons to do so. Both papers rely heavily on data from it, it seems.

But, if the point is to rule out a lab leak (and, hence, a cover up), this line of reasoning will not do at all. For, rather than testing whether the data they do rely on can distinguish empirically between the evidence for the Wuhan market and against a lab leak, the paper rules out a lab leak by fiat on the authority of those whose impartiality is questioned by critics of China. So this paper does not settle the matter at all.

Notice that I am not claiming this is poor science. The paper uses what it calls "spatial analyses" to "show that the earliest known COVID-19 cases diagnosed in December 2019 were geographically distributed near to, and centered on, this market." And this it undeniably does compellingly and with interesting techniques. And so the paper may well be published after proper peer review.

But in the media Michael Worobey's paper is presented as settling the politically salient issue (lab leak vs market). And his own comments seem to contribute to this perception in the context in which they are presented. I assume he consented to this because in my experience science journalists tend to be careful with their scientific sources in checking how they are presented. Yet, for the purposes of the controversy (lab leak vs market), the underlying logic of the paper  is something like this, "given that we assume on authority of an interested party that the lab cannot be the origin, we will study how data on the initial spread relates to the Wuhan market." 

I really hope I have missed something and that I am wrong about this because I do not want to contribute to the undermining of trust in science reporting of quality media. But even leaving aside the part of the story that has made it a central issue in our contemporary culture wars, there are many public health reasons to get clear on what the source of the original problem is. And it is a mistake to consider and irresponsible to claim that it is settled based on these studies. 

 

Even in a Welfare State Being Sick Is Expensive and Trying to get Care draining (Covid Diaries)

In January 2021 (recall), after I tested positive for covid-19 in London, I contacted my GP in Amsterdam. She was gracious in acknowledging that her initial diagnosis (stress) of my symptoms was mistaken. (For my official "covid diaries," see here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here;  here; here, and here). On the phone she urged me to get a blood-test to establish some base-lines for my disease (amongst other reasons). Because I was not part of the NHS (yet), I found a private provider who came to my home. Much to my amazement there were numerous providers of blood tests in London who cater to the very large ex-pat community. Within 24hrs, in the middle of a lockdown and stories of long lines of ambulances waiting to deliver urgent care patients, I had my test results and a hefty bill. I paid the bill. After consulting with my travel and health insurance companies, I decided to submit (via a nice app) to my Dutch medical insurance. The insurance company specializes in medical care workers (since my better half is a surgeon), and I have always been very happy with them. When a few weeks later, I checked on its status, I noticed it was declined. I contact the insurance company which informed me that I needed a proper referral from my GP. 

I contacted my Dutch GP -- where the practice was, of course, also groaning under Covid restrictions and added volume of care --, and explained the situation. Thankfully my GP had good notes, and it was agreed to provide with a referral for the insurance company. I was then introduced to the secured email system they use to communicate sensitive information to patients, and I was reminded that I could use the (less secure) web portal for communications with the GPs while I was in London. In the year since, I have become very familiar with the quirks of both software systems (but about that some other time), but they have also made life much much easier (especially as my brain fog developed).* So, a few weeks after submitting the initial declaration, I resubmitted it. 

I think most regular readers realize that my family lives in London, whereas I work and have a place in Amsterdam. (I eventually joined the family GP in London, and so entered the NHS system.) In fact, I bought my 1BR in the Fall of 2019. This was, in fact, the first bit of property that I owned in my life. And as 2020 developed, travel between London and Amsterdam became increasingly cumbersome. And just before it became nearly impossible, my Chair suggested I head to London as we were transitioning to remote teaching. (Subsequently, I negotiated a teaching leave during the Fall because I accumulated a lot of extra hours.) So, for most of 2020 and 2021, the final book boxes remained unemptied in my living room. That Fall (2020), because I didn't have a home office space, and the British Library was closed, I subscribed to one of those office companies so that I could get some research done and have a quiet please for contact with my colleagues and PhDs.

Okay, back to that insurance claim. Early last year I forgot about it because I had more important things on my mind: like not burning down the house accidentally while making lunch, figuring out how to coordinate the exams for a massive lecture course from my sick-bed in another country, and, say, my inability to walk more than fifteen minutes with my family. But 300€ is a lot of money even in good times, so eventually I remembered, especially when, under ordinary social security rules my salary started to be cut after nine months of illness (at the start of October 2021). This amounted to a 15% salary cut. Not huge, but noticeable in a two-household single family with a school-going kid. At that point, I took a sober look at my expenses, and made some non-trivial cuts: I gave up my US phone-number (after thirty years or so), paused my habit of collecting antique books, didn't renew a whole bunch of subscriptions to learned journals and magazines, and stopped my habit of ordering out when alone and took up cooking again (at which time I was less likely to burn down the house). During the early phase of my illness I also eventually remembered to halt my office subscription. None of these decisions felt like hardship, and whatever stress I had about my illness, I am blessed that I am not especially worried about my financial future. 

So, in the Fall of 2021 I contacted my insurance company which suddenly became much harder to reach due to their service agents working from home, the heavy volume increase in claims (by folk like me), and, I assume, increased sick leave (some of this information comes from the message they repeatedly provide you with while whiting for an agent). And because I was not feeling so well during this period, I invariably gave up after waiting after endless periods on hold.  I return to the claim below.

Now, the insurance claim is not the only such extra expense I have encountered. And I will spare you the many examples. Unlike in the American system where these kind of things can be catastrophic, the extra expenses per occasion amount to 10-20€ at a time. In the Dutch context this is primarily due to the fact that many individual, specialist care providers in the Dutch system are opting out of direct contracts with insurance companies, so that they can charge slightly higher rates. (The rates have a mandated ceiling to them, but they like to charge near the ceiling.) And at the urging of my occupational physician I have tried out some of these care providers (some of which providing highly experimental care). In most cases, I have simply swallowed the cost, but I have also tried to get my university to pay for some of the additional costs (the margin between what my insurer will pay and the amount I will pay), and much to my frustration the university declined to do so (even though the care is being undertaken at the urging of the occupational physician). Don't get me wrong I don't feel arm-twisted by the occupational physician; I am happy she is on the look-out for care that might help.

As an aside, you may wonder why I bother with the Dutch health care system, if I am now part of the NHS (where nearly everything is free except for some modest co-payments for prescription drugs). The simple answer is that the wait-periods for non-urgent care -- and long haul is not considered urgent -- is really extraordinarily long in the NHS. (There is a lot of quiet suffering in the UK!) Obviously, this is partially the effect of switching resources and people to treat urgent Covid-19 care, but it is also function of structural underfunding of NHS, and the way its referral procedures and prescriptions function. It's quite amazing really that a few weeks delay in the Dutch lead to modest apology, and it would be treated as a miracle of efficiency in the NHS. (In a nearby possible world, I would do comparative health care spending research by now.) So, I keep my Dutch GP informed of my treatment and consultations with the long haul clinic at UCLH, and she helps coordinate my Dutch care. So, I try to get the best of both worlds, but it is exhausting to get care for myself.  (I will ignore in this post the many things that make it infuriating including the fact that many Dutch specialists treat long covid as a life style burn out or as primarily a lung disease.)

Last week, I needed to call my insurer again to figure out reimbursement on a new health care provider and in particular how to make the insurance codes match on her bills to me and my claim submissions. The wait was short, and I got a wonderful agent on the phone. And after we solved that problem (it would cost me, I guess, 10-20€/visit), I decided to ask her about the blood test claim of January 2021. Thanks to the app, it was easy to hunt down all the information in her system, and after, putting me on hold, and looking through the claims, she admitted it was unclear to her why I was not paid out. But she couldn't make the decision, the claims department had to do it. And then she informed that she did not get priority with the claims department, but that she would also be put on hold and that the wait would be long. Would it be okay if she called me back next week? I noted and wrote down her name, and happily agreed to these terms. I also noticed I had gone well beyond the 30 minutes I can handle phone-conversations. And so went to bed to give my head a rest.

Fast forward to the present. I just got off the phone with another kind insurance agent who had no record of my conversation ever happening last week. He never doubted that it did happen. He and I went through the case again, and he agreed with his colleague's evaluation that it was odd I was not paid yet, but formally this was a decision of the claims department. This time, I asked if he could send me an email or a letter that we had had this conversation. He agreed. And he also suggested that the company would only contact me if they declined to pay. If the claims people sign off, I would get the usual notice on my app, and the money. I happily agreed to those terms. When we hung up I noticed the conversation I had lasted 27 minutes and 5 seconds. It was time to make another espresso.

Now, to reiterate, none of this is catastrophic American style. I don't have the risk of collecting agency breathing down my neck, eviction, etc. But it has given me a glimpse of the ordinary struggles that poor people with chronic diseases have even in reasonably well functioning welfare states. (And, of course, Dutch recent history -- google 'toeslagenaffaire' or 'Dutch childcare benefits scandal' -- suggests it does not work so well for poor people who have a migration background.) Expenses accumulate in open-ended fashion just as the source of income is reduced. It eats up energy to keep track of these, and to try to get claims paid out. This is alongside the emotionally draining aspect of trying to get oneself (or loved ones) the care they need, and navigating complex bureaucratic systems and the not infrequent passive aggressiveness of overworked care workers who may not be able to help you at all. (The ones that clearly think they may be able to help you tend to be much nicer!) As a male professor, I have a lot of social capital, and I have non-trivial number of connections in medicine. My rule of thumb is, if the whole process is difficult for me, it must be agonizing for folk with much fewer social and financial resources.

So, if your underlying disease makes it difficult for you to concentrate and have modestly long conversations, trying to get care (while partially working and being a dad/husband/son/brother/uncle, etc.) actually undermines one's heath and sanity. And it's a peculiar social fact that when your expenses increase due to need, your income gets cut. Meanwhile, that blood test remains un-reimbursed.

 

Covid Diaries (2022)

I have had an eventful two weeks, and so it's time for another entry covid diary. (For my official "covid diaries," see here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; and here). Before I get to the events: the really good news is that my symptoms are under control if and only if I avoid most social contact, avoid contexts with background noise, avoid multi-tasking, go to bed between nine and nine-thirty, and turn off all electronics a half hour before I go to bed. When I don't avoid these I am likely to have what I call head fatigue (which is a leaden feeling from the nose upward). I also spent most of January swimming daily, and during it and the hour after, I would almost feel completely normal.

The bad news is, of course, all this means I lead a very socially isolated existence. I spent too little time with my family. Have stopped hanging with friends, and am excused from work related meetings. For example, one shocking discovery has been that walking together silently is, in fact, also a form of multitasking. As an aside, when you have long covid, minor physical ailments have an outsized impact on well being because they disrupt sleeping patterns and physical exercise. Last Summer, a swimmer's ear threw me back. During the last few weeks, I have struggled with modest but persistent daily pain -- a pinched nerve in my back--  which made it difficult to sit and sleep (luckily I didn't notice it while walking and swimming). Luckily, that's not really bothersome anymore. So much for the status quo before my teaching started (this past Tuesday).

Monday last week I had an appointment at the Long Covid clinic at UCLH. My physician was new to me and a lung specialist. Despite a long delay and lunch time, she took her time to check my past case history with me and to hear about how things were going. She was the first physician I have spoken to who said that my particular symptoms are not unusual. One of her patients, a young mom, is even more noise sensitive than I am and basically can only see her baby a few minutes a day. My physician insisted I should remain hopeful despite the fact that I don't belong to the group of patients that recover after three and nine months. As long as I keep improving, a full recovery is likely in her experience. 

Because of my booster shot, I was not enrolled in various trials they are running. But they are running a trial with Famoridine (an anti-histamine medicine), which has shown improvement in patients that are struggling with cognitive symptoms during long covid. And suggested I try it, too. (I return to that below.) Because there have been quite a few stories about blood-clotting, she also suggested a much wider range of blood tests than ever before.

I walked over to the blood-testing site down the hall. It was a total zoo: people yelling and cheating. There was a number system to queue, but people also could be slotted in with pre-existing appoints. After 45 minutes, I realized that at the rate they were going it would last a couple of hours before it was my turn, and the fighting and anger was not being blocked out with my noise-canceling headphones. I knew I could safely leave the queue to get lunch, but I really didn't want to return to this wild menagerie. Corona lockdowns have really changed national character because I have never seen a queue behavior like this in England. Some asking around landed me with a kind receptionist, and I booked an appointment at the blood bank first thing next morning. The next day, the nurse told me that this kind of behavior is now a daily occurrence at any time of the day. And I suspect that before long the queues will be even longer because of an absence of workers who will put up with this crap. (She also told me that my absence had been noted the day before because apparently some of my blood had been marked for research which surprised me.)

Later that day I went to my GP because I suddenly realized that there was a risk my Famoridine would not be filled before I would leave town. I spent a few days trying to charm the office managers of the practice, and trying to contact a person at UCLH. But eventually I got a text massage from one of the GPs (unknown to me) that if the hospital had wanted me to start the meds at once, they would have given me a script. Now I had to wait for their letter to the GP, and then the GP could write me a prescription. I learned this way, that in the NHS it matters quite a bit which budget pays for your medicine (and hospitals have little budge for non-urgent patient care meds). Lesson learned for next time.

The previous paragraph understates, of course, the powerlessness and energy consuming effort to get care. When I first got covid, when I was in London, I joined my family's GP practice. My London GP had then just (partially) recovered from her long haul. And she was empathic and pro-active. She left -- very clearly annoyed at how her peers had treated her -- and now I am a number in the (very large) GP practice. That same week I was in the practice with my son, and I was on my best behavior to see him get excellent care. 

Because of the hip problems, I didn't feel especially well rested on Tuesday ahead of my lecture first class. (There were also other sources of anxiety unrelated to me that I am skipping.) It's a required, first year, undergraduate-lecture-course with 640 students. Under our corona rules, we're teaching in hybrid format. Class numbers are capped at 75 with a sign in system. When I went to the service desk I was told the hand-held microphone was broken. I felt my heart sink, and I nudged the desk agent to call our service team to try to fix it anyway. When I went to the auditorium, the previous lecturer was running over time. I decided to stand quietly back in the room, but making sure I was in his line of vision. I couldn't believe it that he decided to tag on another ten minutes leaving my crew very little to get me all set up. (We record lectures which is distinct system from the zoom link up we use to broadcast the lectures live.) I had to control my nerves not to give him an earful.

Once the auditorium starts filling up, I immediately realized there were a lot more than 75 students. Tim (who runs our canvas pages in the department) counted 150. I decided I didn't have the energy to try to throw half out. But I did aggressively police masking in the front rows (and banning food or drink for them). Most students were excellent about this, and the ones who protested I offered a spot in the balcony. I told the students about my long haul and warned them  that I might struggle with Q&As, and probably the quality of my jokes would suffer.

Much to my amazement the sound technician showed up as I was introducing my TAs, Wais and Tomás, and Tim, and he fixed the hand-held microphones. So, while I started the lecture ten minutes late, this was a great energy boost. The next ninety minutes were a gigantic adrenaline rush. I even fielded questions during break and after. (About which below.) While I talked slower than I ordinarily would -- I had to cut a few slides near the end --, I thought it went well. I received a resounding applause, and while I usually make fun of that, this time I soaked it up. I had to apologize to the lecturer after me, explaining that I had a late start due to our colleague before me.

As a rule I don't share student stories. But the encounter with one of them after class was so memorable I'll repeat a stylized version of it to protect the identities involved. An excited student who shows up with an entourage tells me it was great, but would like to share a reservation about the syllabus. I say, 'please I welcome suggestions.' It becomes clear the student objects to me putting The Communist Manifesto on the syllabus. I say (a bit worried about where this is heading), 'why is that?' The student explains it will give the other students 'the wrong idea about Marx; it's not theoretical enough. It's too popular.' We go back and forth a bit about different genres. Eventually I ask, 'what would you suggest? Excerpts from the Grundrisse?'

'That would be good or Engels' Dialectics of Nature,' the student responds (and saying the title in English) before explaining to me how important Engels is. I ask the student if s/he read Engels in English, which elicits an apologetic affirmative answer. As I start to feel the exhaustion of the day flowing into me, I say 'look if I were to teach the Grundrisse or the Dialectics of Nature, I would have to teach Hegel first, no?' The student agrees, and castigates me for not having Hegel on the syllabus:)

 

I walked home through town, and with a delicious lentil soup I savor the day on the side of a canal. It takes me a few hours to fall asleep. I know I am apprehensive about how I would feel the next day. I am disappointed when I wake up with a headache around five thirty. And I know I won't be able to fall back a sleep. The headache stays with me for most of the day, but it's not as bad as last Fall. There is no nausea or dizziness. I chill doing nothing. During the afternoon I have to go to the hospital to pick up some sleep testing gear. I walk back through the drizzle along a largely unused canal (Noordhollandsch Kanaal), which nowadays turns out to provide cooling for the hospital.  I realize that I am getting blister on one of my toes. Before taking the ferry back into city (see picture below) I break my low carb diet and treat myself to divine French fries with mayo and curry. 

 

The testing gear is too advanced for me, and after futzing around with them fruitlessly I decide to go to bed without them. I sleep better than the night before, but not great; I wake up fatigued but without a headache. I return to the hospital  next morning, and am informed I am not alone in struggling with the stuff. (Later that day, I learned that the test failed unsurprisingly; I will have to return for more invasive set up that they will apply in the hospital.) 

 

By the time I am back at the university, I wonder if I'll be able to complete the lecture. And whether they have to share tapes of me again later in the semester while I am sick in bed. In my vulnerability I  decide to put on a tie (which I always have available in case I have to show up in academic robes for a thesis defense in my office).  As I walk into the auditorium, the previous lecturer (a different one from the dude that annoyed me in Tuesday) is wrapping up.

 

This time there are even more students in the hall. I am a bit more ambivalent about this lecture. The student questions were phenomenal -- always a great sign --, but the ending is a bit messy. I have to skip a few slides on material I think important, and I notice no applause.  As I walk home, and I notice that the weather suddenly has improved. It's warmer and I exhale. I take pictures and grab my lentil soup. I still have trouble falling asleep. I wake up around 4am. I know a headache is lurking, but I fall back asleep. When I awake it's after 7 and I have have slept almost nine hours. I wouldn't call myself well rested -- I'll chill today --, but there is no headache. And while I will be very cautious the next few weeks, for the first time I think I may get some of my life back.

 

On Rammstein, MRIs and Being Real (long covid Diaries)

A month ago we went on a family holiday on a deserted island in the Indian ocean with a very tiny, quiet resort on it with huts overlooking the ocean. It was very quiet, and my family spent their time sailing and snorkeling. While I love swimming, I didn't feel ready to try my luck with an ocean. So, twice a day I went to the hut with a treadmill and started to do a gentle interval training. It was painful, but I enjoyed it. The rest of the day I would read and live-tweet some of my chapter summaries of books. Only at dinner would I notice any symptoms of covid with the minor buzz of other guests in the background and dinner conversation exhausting me. I would fall asleep early not bothered by the heat, and sleep long restful hours.

I was reminded of a book, The World Beyond Your Head: On Becoming an Individual in an Age of Distraction, by my graduate school dog-park buddy (and basketball competitor), Matthew Crawford  (whose Shopcraft as Soulcraft was a genuine bestseller and briefly a cultural icon), in which he points out that in our age the very rich pay for quiet (as can be noticed in their airport lounges). Most of the few other guests at the resort were very bourgeois Suisse couples (bankers, insurance, etc.), sporty and pleased with the lack of noise while they enjoyed the ocean (and presumably each other). It was truly restful, and it was also delightful to be around my spouse and son while both were mellow. 

When I returned from the holiday, I went back to lap-swimming in the pool down the hill. And I quietly started to muse that if it weren't for my fatigue  after social interactions I had turned the corner on covid. (For my official "covid diaries," see here; here; here; here; here; here; here; here; here; here; here;  here;  here;  here;  here; here;  here; here;  here; here; here; here; here; here; and here). Two weeks ago I went to Amsterdam for a MRI and a visit to my occupational therapist. The occupational therapist insisted that I try to to discipline myself and avoid social interactions for more than 25-30 minutes (including with my family). Of course, I had to experiment occasionally with longer interactions, but I should really try (now using her words) not to deplete energy. She recognized that returning to teaching in February would mean I would violate her instructions, but since I claimed I 'gain energy' from my undergraduates, and these were fairly unidirectional lecture courses (I promised her to make few jokes and leave less room for questions from the lecture hall), she resigned herself to it.

Now I know many academics really dislike social interactions, and I am myself known to be irritable, impatient, and unpleasant on occasion. And there is no doubt that I can be incredibly happy writing hours on end. But in general I love the social aspect of doing philosophy together, and hanging in cafe's and talking. And I love spending time with the undergraduates discussing the material and learning from their insights. And I love gossip. And after a few years of pandemic I really just want to watch crowds enjoying life. 

I was musing about this when I arrived early at my MRI. Much to my amazement I was allowed to go thirty minutes ahead of schedule. After the MRI I had a minor panic attack that the nurse who administered it never asked me for my name (just my weight) and whether my wedding band was made of pure gold. I haven't heard the results yet, but I wouldn't be surprised if my results were mixed up with those of the lovely old man who was scanned after me.

The brain scan was pure horror. I have done them before, and I have never been too bothered by the claustrophobic set-up or the noise. (I had a MRI done of my lungs when I was first diagnosed with covid.) The claustrophobia still didn't bother me--I just closed my eyes. But even with ear-plugs and noise-canceling headphones, a brain scan is the way to kill off all the long haulers. Imagine your head exploding, and then adding TNT, while listening to Rammstein. It only lasted thirty minutes or so. But the variety and intensity of the noise stayed with me for a whole week. I was bedridden, insomniac, and with a weird nausea/headache. And while I am much better this week (more about that below), the optimism of a few weeks ago  eliminated. The bitter irony is that I had arm-twisted my neurologist to put me in the scan. (I am back to swimming my laps daily.)

On Monday I had an important telephone meeting with an occupational health agency expert. According to the law, after one year this expert evaluates my dossier in light of a formal report of my occupational physician, documentation sent by me, and an employer's report. While I have another year on disability funded by my employer, this is the first moment a process that can lead to termination or a new career can be initiated. So, it's not just a routine conversation. I don't think I reveal any state secrets when I disclose that my Chair had not submitted her report. This told me that my department wasn't yet at the point where they would use my partial disability to get rid of my position and salary.

As an aside, but not irrelevant, luckily, the evals of my Fall course were stellar: students felt they had to work hard and were challenged, but they adored the course. (I did say I love my undergraduates, and it is returned.)* The only sign in the evals that my students noticed anything of my covid is that one complained that my jokes were real downers (usually people praise my jokes).

The conversation with the occupational expert got off on the wrong foot when I misunderstood her intention in her trying to get me to understand that based on my CV I was probably overstretched before I got covid. I thought she was insinuating that my covid was mostly a burn-out. My reaction was not wholly surprising because too many Dutch medical types have tried to push this line on me this past year. And I reminded her that while everyone in Dutch academy was overworked (because of structural lack of funding), I was in no mood for another physician trying to convince me that my situation would just heal itself if I took a step back. But we quickly clarified that what she was trying to say was that I should not expect to return to my former level of activity in my job. I assured her that there was no risk of that. I don't expect to get any research done while teaching, and for the moment I am withdrawing from all speaking engagements. 

The rest of the meeting was anticlimactic. She said she trusted my occupational physician that I was likely to have a full recovery. And that as long as my department and I stayed within the guidelines of the occupational physician we should aim to keep me in my position. We would re-evaluate in four months. Later that day I received a lovely email from the Chair of my department that echoed these sentiments.

As I turned to preparing my syllabus for my enormous required, survey course -- 637 registered students -- I initiated a whirlwind of emails to settle logistics. Leaving aside pandemic uncertainty and the fact that we still have to do online testing, courses this size really and this prominent in the curriculum involve half a dozen stake-holders who all have their vision on what it should be. As the emails went back and forth, I mentally realized and accepted I would not get much scholarship done. It would be a prep week. 

Two nights ago I awoke in the middle of the night from a complex nightmare. As I laid in bed restless, I wondered whether my irritability over the burn-out trope was perhaps blinding me to the truth; maybe I couldn't handle the workflow at work? But as my mind drifted into anxiety and I reflected more on the dream, I was terrified over my future: what if each class lecture would incapacitate me for two days (like my Fall seminars)? What if I really could never have a real, long conversation with my kid again? What if I could never attend a workshop again? What if my wife becomes miserable because she has lost her partner in crime? And so on, and so on. 

I mentioned in some of posts at the end of last year that I understand myself as partially cognitively disabled. This limits my life, but it also puts enormous strains on others. My immediate colleagues have had to pick up some of the slack, and my family's life-style is hugely impacted. A lot of the changes can be folded into 'the pandemic', but some of the adjustments pertaining to me qua individual may well be structural for me, and my environment. If my class does incapacitate me I will have to think about a career switch. Not because my department will nudge me out, but because i shouldn't be in a job that makes be bedridden out of sight. And that is terrifying.

As regular readers know I have been influenced by (recall here; here; and here) Elizabeth Barnes' The Minority Body. And one lesson I took from it is that being alive just is living with constraints. The real political and psychological problem is that when you are disabled or impaired, our social environment is shaped for different bodies and agents.  The adjustment to the absence of once familiar affordances which have become out of reach is painful and tiring. Yesterday, Matt Strohl called my attention to a beautiful essay by Francey Russell in The Boston Review. In it, she quotes Sidney Poitier that “acting isn’t a game of ‘pretend.’ It’s an exercise in being real.” This made me see that each new role would be exhausting for actors. For me, being cognitively impaired is taking on a new role, and, if you allow me the inference, so an exercise in being real.  

Final Covid Diary Update of the Year: On Partial Cognitive Disability

I am taking my customary end of year blogging break, again. And I hope to return to near-daily blogging in January. 

I have enjoyed and appreciated all the well wishes, my dear readers. (For my "covid diaries," see here;  here; here; here; here; here;  here;  here;  here;  here;  here;  here;  here;  here;  here;  here;  here;  here; here; here; here; here; here; and here). It's a strange feature of my current disability that it is easier and more relaxing for me to write a blog post than to have a minor conversation in a café or restaurant. Social interactions are exhausting, and if there is ambient noise or more than one interlocuter, I am likely to have headaches and bad sleep (and a kind of 'soft'-brain fog--in which my thoughts slow down and my phenomenal experience is not as rich as it ordinarily would be). Unfortunately, the side-effect of such interactions is reduced time and energy for blogging, and other writing. (Basically I have been unable to do research while I taught my small Fall course.) 

My occupational therapist has convinced me to try to limit social interactions to no more than thirty minutes. And to plan plenty of rest between them. Her theory being that longer interactions just drain me of all energy. 'Energy' is the explanatory concept, the goal, and the ground of everything the occupational therapist says to me. (In Dutch, the occupational therapist is an 'ergo-therapist,' and in conversation with her, I have to prevent myself from using random passages from Aristotle's Ethics.) She basically compares my brain to a car battery that due to my current activity pattern is incapable of fully recharging and, so, fails to retrain itself post trauma. (She alternates comparing my brain to one that has suffered considerable trauma and one that is suffering from burn-out.)

As I have noted before (recall), the occupational therapist has induced a number of behavioral changes all of which amount to avoidance of multi-tasking, doing a better job of relaxing when I should be relaxing, and to give myself a chance to 'build up energy.' Luckily, I don't have to teach for about eight weeks, and I will also try to do more exercise along the way.

The most recent meeting with the occupational therapist annoyed me greatly. Basically, all the new exercises (and 'home-work') involve planning exercises. These are chapter 2 of the exercise-book I was given. It took me a while to figure out why I found it annoying. (The occupational therapist is a funny and empathic person.) But after some reflection, I realized it was because I felt I with my particular symptoms wasn't being treated, but rather I was a number being put through a pre-existing training program. Undoubtedly, the training program is useful, but while i have some cognitive impairments, inability to plan my life is not one of them.

As I said it took me a while to figure out my irritation. What triggered it was her considerable surprise that reading and writing is relaxing for me. Her surprise didn't bother, but the lack of adjustment of the training program does. In particular, she sent me a number of videos (which her patients appreciate greatly) even though I had explained to her earlier that zooms and videos are especially draining. Paying attention to another's reasoned argument or explication basically sets me back a day; whereas reading is a piece of cake.  

All of this is in the category, minor troubles relative to the sorrows of humankind. But since I have been sick for a year now, and the pattern has recurred with several other health care providers (go read the covid diaries), I am more attuned to it. Basically nobody knows what my underlying problem really is, and nobody is willing to spend public money to do the kind of invasive testing to figure it out. The testing itself is unlikely to produce conclusive evidence of what's wrong with me, and it is unlikely it will produce a suggestion of how to treat me. And since hospital visits actually set me back days on end, the medical system sensibly hopes my body will cure itself eventually rather than drag me in for lots of tests.

Since this gets repeated with most folk like me -- i.e., long haulers without clear lung and/or heart problems --, we're also disappearing from the system. Nobody is counting how many of us there are, and how much work is being lost. Basically, GPs and and occupational physicians keep track of their own patients, and they know I am not alone; and they share best practices in whatsapp groups. Often we read the same pre-prints when I come to them with experimental treatments. Interestingly enough, the London covid clinic prescribed me heavy dosage of melatonin, and then my UK GP refused to prescribe it except in very small dosage. (This is actually funny because in Holland melatonin is an over the counter drug, but my Dutch GP expressed surprise that this would work at all for long haul.)

My Dutch neurologist told me he rarely sees patients with long haul. (Meanwhile, the waiting list for the neurologist in the London long haul clinic is over a half year now.) Since in the Dutch system, the costs of the first two years of (partial) medical leave are born by the employer and employee (I have have a pay cut alongside my reduction in work hours and responsibilities). And that means that the government will only start noticing us in the Spring of 2022, when the first generation of long haulers will be pushed partially into social security. And since the employer is initially responsible for finding fitting work for the employee, the government will only notice those who are completely disabled or those working for very small companies. So, the numbers, if any, won't start adding up until later in 2022 and 2023. 

If I could handle social interactions, this would be the moment I would try to mobilize a Dutch patient group for long haulers. But the very idea of trying to fight the system, and to coordinate many despairing and angry patients, is not 'energy enhancing.' And so I hope that by planning well and conserving energy, I recover sufficiently so that I can keep a version of my job by the end of next year. The system, of course, finds my defeatist response very welcome.

I have come to describe myself as cognitively 'disabled' and 'impaired' (or 'handicapped'). I know that sounds final, and I don't believe it's final. But I have also noticed that 'sickness' doesn't convey my situation and what I need. I need others to accommodate themselves to my limits, and it means that I have to police these limits in a way that I am not used to at all. (It reminds me a bit of when I had to keep visitors away from my partner and son when he was new-born.) And I am also discerning that I have to police my own activities most. Obviously, this risks a spiral of social isolation; I am no fun to be around because I can't do much or engage in much. Yesterday, when I was in the office, I literally had to keep well-wishing and well-meaning colleagues from entering my office because I needed time to recover. And it is very difficult to be a partner and dad, when you have to do it in twenty-five minute installments.

The reason I use 'disability' is because when people encounter me they can't see anything wrong with me. And while I don't fit some of the stereotypes of cognitive disability either, at least with cognitive impairments, we're used to them not being wholly visible in one's countenance. (Sometimes people notice I am tired or green/gray.)

As I noted recently, I have also been diagnosed with partial hearing loss. This has nothing do with covid, it seems, and is potentially reversible. But it occurred to me that one reason why social interactions are so exhausting is that because of the hearing problems I have to work harder at hearing and processing what people say. (This is a good place for your favorite joke about ignoring what others say!) One day, I'll write a paper about intersectional disability.:)

In January, I'll do a post on how all of this has changed my approach to teaching. But I have gone on long enough, and I need some time away from the screen. It is the way.  

 

 

 

 

 

 

The Long Haul Glass is half full (knock on timber)

It's time for a long haul covid update again. (For my "covid diaries," see here; here; here; here; here;  here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; here; and here). It's a nicer one to write because, despite a gloomy ending, I do have a lot more positive news to report.

1. So a few weeks ago, I had my first meeting with an occupational therapist. I may have mentioned that I find her theories silly, but there is nothing wrong with her practical insights. She made me do five day of diaries (by thirty minute intervals), and I was shown that I multitask a lot. And that a lot of things count as multi-tasking which were not intuitively multitasking to me: like walking and talking, like walking and listening to music, cooking and listening to music, writing and listening to music, etc.

2. So, I have made a lot of relatively minor behavioral adjustments all in the spirit of reducing what I call soft multi-tasking. Including some adjustments designed to relax before going to sleep (e.g., turning off my phone 30 minutes before lights out; no watching of netflix/football (etc.) before I go to sleep, etc.). I sleep much better, especially if I manage to go to bed relatively early. (I still need melatonin, alas.)

3. To my amazement, my headaches, nausea, and most of my sudden bouts of fatigue have largely disappeared. (I'll get to the *MAJOR* exception below.) So, my quality of life has improved dramatically again because I am not really suffering much day to day. And in many ways I feel like I did near the end of July, when I was confident I would recover before long.

4. Some of my symptoms (dizziness, tinnitus, and ear problems) have been tackled by my (fantastic!) new ENT physician. These problems were all eliminated by her aggressive treatment. However, a hearing test on Thursday revealed that, in fact, I do have reduced hearing loss (something I had suspected all year), but in my right ear only. Extra testing revealed the problems are due to my eardrum and not any of the nerves or structures behind the eardrum. This is very good news because it suggests it's reversible and (presumably) unrelated to Covid. My ENT thinks it's due to my chronic sinusitis. (Something diagnosed about five or six years ago.) She has started me on a whole battery of tests to get to the bottom of the chronic sinusitis  and to try treat it (so hopefully I have better hearing and better quality of life to hope for). These tests will be completed by the end of January, so this will be a major subtext going forward.

5. My Dutch GP (the junior partner of my longstanding GP) has become pro-active in helping me navigate the health options in Dutch context. She has invested time and energy to research different options and has coached me in dealing with recalcitrant specialists, and answering my questions. It really helps to have her in my corner. It also helps that the practice has a very good patient dossier system that allows for low key interaction with the GPs.

6. With some holiday and a month of no teaching coming up, I am optimistic about recovering more. This optimism is also due to the fact that with my ears recovered I can return to my swimming exercise, which is physically and psychologically a major boost.

Okay so much for the good news.

 

There is still bad news:

1. Social interactions still destroy me; I quickly get fatigued, headaches, and irritability after even minor conversations.

2. Since I mostly avoid social interactions, teaching and hospital/physician visits are the major trigger of these problems. Often adrenaline takes me through the actual class or the visit but the aftermath is brutal (fatigue, headaches, etc.). My occupational therapist claims she can help me with this, and our next meeting is all about strategies for improving my social endurance. (I will just ignore her theories.) So, hopefully she is as successful with this as she is with my multi-tasking issues. 

3. All of this (1-2) has led my occupational physician to cut my teaching load (and my salary) for next semester again. (I agreed.) I am very sad not to teach my inaugural feminist philosophy class, but my large lecture course is shorter and easier for me (despite the gigantic enrollments--we're expecting over 600 students.) This will leave me more time to recover from teaching, and also to spend more time with my family.

4. Having said that, while the aftermath of social interaction is still brutal, it's also clear that I am recovering quicker than before. And that's clearly because now when I think I am relaxing, I am really doing a better job of actually relaxing.

5. I had to miss my son's 12th birthday. Because I am in no position to do quick return trips between London and Amsterdam. I shared in some of the fun through social media (which I also find taxing), and it's not the same thing.

7. I know a lot of you want to cheer me on (thank you), and kind of try to spin things positively on my behalf. Well, this week the glass is half full.

Happy Holidays!