107. The Rush to Forget. Dr. Shane Neilson. Cambridge, Ontario, Canada. 08/18/24

Join us as we transcend time and space to talk with Dr. Shane Neilson in Cambridge, Ontario.  Shane discusses 3 books. His memoir, Saving: A Doctor's Struggle to Help His Children, a contributor and editor for, The Covid Journals: Health Care Workers Write the Pandemic, and a poem anthology with Roxanna Bennett, The Suspect We.  Shane also plays two of the hottest games in the pandemy! Submission to the Covid Journals in the Form of a Pandemy Question and Poem Title in the Form of a Pandemy Question!

Submissions to The Covid Journals in the Form of a Pandemy Question:

How did we demonstrate FIGHT OR FLIGHT during the pandemy? (Shane Neilson)

How did we do FACING THE UNKNOWN? (Apprehensive, Overwhelmed, and Helplessness by Shan Wang)

How did BONGO GUY IN LOCKDOWN come out of the pandemy?  (Chrisptpher Blake)

WHAT WAS MISSING during the pandemy? (Margaret Nowaczyk)

Is there An UNCONVENTIONAL CONCLUSION to the pandemy? (Arundhati Dhara and Sarah Fraser)

The Suspect We - Poem Title in the Form of a Pandemy Question:

How did the pandemy impact Disabled Love?

Was there a Redefinition of the Miracle during the pandemy?

Special thanks to Nardwuar the Human Serviette for inspiring both games. 

Thanks for joining us as we unite humanity through stories of hope, connection, and community in the face of the global pandemy. We are all in this together, and we’re glad you’re here together with us. Thanks for taking a moment to like and subscribe and follow the Pandemy Show on social media (Twitter, Insta, FB, and TikTok). Thanks to Giant Value for letting us know everything is going to be alright, Pieper for the art work, and Becky Nethery for copywriting and website design.

Transcript

0:25

Good day and welcome to the pandemic show stories of the pandemic for people living in the pandemic. No one is alone on the pen. Demi show Thanks for joining us. As we unite humanity through stories of hope, connection, and community in the face of the global pandemic, we are all in this together, and we're glad you're here together with us thanks for joining us as we transcend time and space to Cambridge, Ontario, Canada. Who are you? I'm Shane Nielsen. I'm glad to be here. Shane, thank you so much for joining us. And for the people of the pandemic, Shane is a accomplished poet, author, father, husband, medical doctor. And we're really lucky to have Shane here talking with us today. We're going to play two games. Shane is the editor of the COVID Journals, a collection of frontline healthcare workers, poems and thoughts around their experiences with COVID. And we're also going to play a poem titled in the form of a pandemic questions based on poems that Shane contributed to the Suspect We, an antho, anthology that he did in collaboration with Roxanna Bennett. Shane, so you're a medical doctor, and you also wrote, and released, a book during the pandemic, Saving, Saving, a memoir, and in it, you really are honest with people about your, journey with your own mental health. Your journey and struggles helping, your children Your son's epileptic, you share your journey. I've talked to people who found your book quite helpful and letting them know that they're not alone. And so many of us have had to deal with our own mental health during the pandemic. So to have a medical professional being honest about their own journey, it's really quite helpful to, to the rest of us who may be experiencing some challenges. To know that we're not alone. Yeah, we're all, we're all, I mean, as they say in the pandemic, right. We're all in this together. Some of us are in it together more than others. the pandemic affects everyone, but it affected us differently. People who had economic challenges. I can only imagine how much more challenging the pandemic was. Also people with health problems or families with children with health problems, I can only imagine how much more challenging. dealing with, your child having epilepsy could be during the pandemic. How did the pandemic impact your family unit? it basically was an exacerbation, in terms of my son, specifically, there were two kind of things. the first was, the inability for him to go to school, which, uh, provided him with a lot of stimulation and supports in that regular environment. And a lot of parents would, you know, attest to that difficulty, but the second part was, uh, because of the pandemic, a lot of the supports in the, in the evening were curtailed as well. So there was no escape. We were locked down like everybody else. It's just that the, the care needs that we. That we had, uh, in, that had inadequately met the need from before were, were withdrawn completely, making the impact, you know, that much more intense. I identify with that because I was bubbled with my mother, who was, and still is, going through a dementia journey, I was one of her caregivers and I was working remotely at her house. And it was tough because when we needed to get additional support in the house, it was hard to find people. There was like a labor shortage and we ended up having to use an agency at tremendous costs that was relying on foreign workers. And I can't thank all of them enough. For helping my family during the tumultuous times of the pandemic, but it was expensive and, and it was hard. It was hard to find. Support so I can really identify and I should have, I should have said this earlier, but I am recording this interview on the Upper Canada Treaty Territory on the traditional territory of the Haudenosaunee, Anishinaabe, and Chugankin people. And I found it was positive in the sense that we got to spend more time together, but it was also challenging because we were spending more time together. Your, your memoir, Saving, did you, where, and I mean, I've, I've reviewed it. It was, it was heavy, but I, I got a lot out of reviewing it. And basically what I took from it is that basically you realize with all the challenges you're facing, you need to rely on yourself. Like there's no personal Jesus that's going to get you through this. Although your personal Jesus might be supporting you. It's up to your own actions to get through troubled times. Yeah, that, I mean, the most obvious, uh, absolutely the most obvious, uh, savior, I think, that I kind of wanted, was, uh, the medical system to be caring and attentive and respectful, but I was seriously disabused of, of that prospect, throughout the course of my life with the, you know, with the occasional disabled mother. I should say with the occasional kind of oasis of care in certain individuals were extraordinary. And, you know, they were positive interactions, but for the most part it's been a hard road in the, uh, medical system for both me and my children. So that kind of help, uh, I would've loved it for it to be there, but it really kind of emphasized the fact the only way I was gonna, stay alive, was. By, getting myself in better alignment with the world, let's say, yeah. And once that happened, a lot of good things followed from that. And I was better able to weather those disappointments to abdications of care, uh, by the medical system. Because you did go through, you've been quite open about, uh, sharing your experiences with suicidal thoughts, and that was One of the big challenges that you went through with your mental health, and you address that in your book. Yeah, yeah, that's been, that's been the perennial difficulty for sure. And that's periodic. And during the pandemic, there was... God, really, really long time. I think in the that with the other lockdowns that happened at Christmastime or something. Something like, it's vague in my mind now. But there was a, there was a really long time there and I'm not gonna go into it with too much detail for, you know, trigger warning purposes. it was definitely a worrisome time for sure. That pandemic, you know, makes everything worse really. And, uh, it made. Those thoughts worse too. The isolation of the pandemic just affected everybody and nothing feeds depression and mental health challenges like isolation. And it's weird. We're in season four of the pandemic now, late August, 2023. And it's almost like. COVID doesn't exist, although it still is out there killing people, making people sick, there's new variants, but it's not something that we're seeing like in the first year or two of the pandemic where the numbers were up, doesn't seem like the hospitals are, are getting as overwhelmed as they had been with now the vaccines being out and You know, I've had COVID twice now. I still mask sometimes now, but I have been caught up in the hype of the great reopening. The Great Reopening, have you found that really positive? So a few thoughts there. the first thought I have is, um, the difficulty we have at this point, reconciling, some of the public health measures that were taken early on in the pandemic with subsequent kind of information that's come out around the efficacy of some of the public health practices that were recommended. So now that we've so called emerged into a great reopening and we're circulating about. And these things aren't even like the information around case numbers and how much COVID is circulating, that sort of thing. It's not really being publicized or it's not general awareness. One really wonders how, honest, public health authorities are being about that. So you got, you know, uh, distrust on the front end, distrust on the back end, what really is the truth. Second, the mask wearing is something I still do in certain instances for sure, just like you. whenever I'm encountering someone whom I know to be immunosuppressed, I'll always wear a mask. that tends to make them feel respected and much more comfortable. And there are A few people, in my life that, that I do that for. I'm always wearing a mask here in the clinic. actually, I figured I'd be authentic here, in the clinic, I'm always wearing a mask when I'm seeing patients because. First of all, I'm often meeting them for the first time, sometimes, and I don't know, uh, to the persons coming in that I don't know if they're immunosuppressed themselves, right? So, I'm still doing that all the time, uh, when forward facing seeing patients. but to, to kind of connect with your, your, your kind of, disorientation. You're like, well, this is good and I feel more socially connected, but geez, what's the cost of that? I know this is still circulating in the, in the kind of milieu and the public of our kind of, I'm assuming, perhaps oblivious navigation of social life. we're kind of back doing the things we used to do, but should we be and what's the safety of that? And what should we really should we be doing? there's this, uh, Historian, medical historian. His name is Howard Markle. He's American. And a number of years ago, he was, you know, he's a, he's a historian of pandemics, specifically, he said that the worst thing, the worst thing that happens after pandemics is that there's a rush to, and this is before COVID, that he wrote this, there's a rush to forget. the first thing that we want to do is forget. the worst thing that happens post pandemic is that, uh, we forget what it was like. We forget the terror and fear. We forget the cost. we forget the consequences and we want things to go back to the way they were. We want our peaceful, blissful obliviousness, And there's a cost to that too. I think that cost for people who are a bit more conscious of things, is to kind of be somewhat at odds or at least, at odds is probably too strong, but somewhat, uh, discomfited by this kind of semblance of a return to normal, but knowing that it doesn't. we're never going to go back to how things were. And just thinking about 2019, we had so many. Pandemics then environmental degradation, income inequality, structural racism, loneliness had become a pandemic. we live in cities where a lot of people feel so lonely and disconnected from others like there are consumeristic society. I think feeling disconnected from the land, all of these types of challenges. And now, mid pandemic, the uncertainty at the beginning of the pandemic, something I remember that fear around the uncertainty. Can you get it from? Can you get COVID from touching a door handle? Then we kind of learn more that it was more airborne in the first place. And we could wear masks and ventilation could be a support. But how much how much changes has there really been to ventilation? Like, we know that ventilation can help, minimize airborne transmission yet. I don't really feel that we've Change the building codes around ventilation or, or like updated the schools to make it safe for 30 plus kids and an educator in a classroom. I worry that we might not have learned, uh, and implemented what we've learned to, make the middle of the pandemic easier and the next pandemic we had the SARS pandemic. We have the HIV AIDS pandemic. Like there are pandemics out there. Now, the last big one, I think that we think referred to as the, the um, Spanish flu, which was global, but there's also Ebola and things like that kind of breaking out in different parts of the world. So we're going to have to go into this kind of pandemic world again, as we continue to develop the world and take away the wild places and living higher density. I really worry with the ventilation as an indicator that we might not have. internalize the negative externality of COVID by making our infrastructure safe, but it's complex. It's complex. I don't think the government could have ever have done enough. I think community and neighbors really came together. you were an editor on, an important book, the COVID journals. Can you just tell us how you got involved with that? And the COVID journals are a collections of poems, stories, testimonials of frontline healthcare workers. And we are going to play Submissions to the COVID journals in the form of a pandemic question. the book, had its genesis in the deepest, darkest part of the first lockdown. Uh, so in 2020, a colleague of mine from the University of Toronto who provides creative writing pedagogy for, medical types. He teaches, uh, he teaches physicians, medical students, essentially how to use narrative, better how to use narrative in their practice. We came up with an idea, which was, let's have a creative writing workshop, an intensive weekend writing workshop for, medical professionals, and let's see if people come. And they did, and so we had this workshop. over a weekend. It was all day. it was the Friday night, Saturday, and Sunday. People did a lot of work. And they all felt like the process was. Restorative and, uh, it felt good for them to be able to come together and discuss these things and write about these things that was COVID. It was COVID inspired. That was the whole theme I did the poetry end and nonfiction and my, colleague, Damian Tarnapolsky did the, uh, the narrative end. because we had such a positive response and because the writing was so strong, the idea for, a book, uh, collecting, an anthology collecting poems and stories and, artwork actual journals of COVID experience like, uh, Daniel Defoe's Plague Year, taking off that, that kind of idea, That's what we decided to do and throughout the submission call across Canada and get all sorts of health care workers to give us work brought on board a couple of, Rackerjack, editors too. and this is where we're at and University of Alberta Press who published the book, um, were, you know, were a delight to work with and made things, um, really easy to, to, to get the book out there. Shout out University of Alberta Press. And I'm so excited to be talking to you With you, Shane Nielsen and to play submissions to the COVID journals in the form of a pandemic question. One of the hottest games in mid pandemic. And our first question is based on a submission you made. Fight or flight. How did people demonstrate fight or flight during the pandemic? The first thing I can think of there as an answer is, um, a classic, uh, metaphor in, in medicine. And let's say medical practice. It kind of organizes this metaphor, the entirety of how, um, medicine is organized, uh, how medicine works. It, uh, structures medicine. And that metaphor is Um, and I'm sure you're familiar with it, um, medicine is war, you know, uh, illness is war, and, um, I mean, the examples that con that connect with that, um, that heading are huge, so, um, the other, just as an aside, there, there, there are essentially two organizing metaphors for medicine that scholars will refer to, and the first is, you know, medicine is war, and the second, it, body is machine, and it's the, Medicine is War piece has been something that, you know, has been recognized throughout history, but the Body is Machine thing has got a much more recent advent, but anyway, I digress. So the Medicine is War thing, healthcare workers are healthcare heroes, you know, they are at the front lines, um, we need to redeploy them. Um, all the rhetoric around, um, heroism and war, that was designed to recruit, the consent and the participation. Of, uh, health care workers to place themselves at risk and to care for others, uh, to valorize them without paying them, of course, without making a sort of meaningful. Substantial contribution other than, of course, their wages, which were contested by the nurses. Of course, you'll recall under the Ford government there. Um, they're, uh, they were, they were limited in terms of how much money, um, they could negotiate according to, uh, provincial kind of regulation or whatever they did, whatever Ford did. there was that Marshall kind of sense. So that was the fight. The flight was burnout, you know, burnout and people leaving the profession, um, especially nursing, uh, for sure. So people, people just leaving their jobs, not able to do them so unwell, but also. Not wanting to do that. The other flight is the one from memory that I mentioned that Howard Merkel said, uh, you know, we want to forget. And, you know, for many of us, it's a. It's much more pleasant life, forgetting, however, you know, there's always the return of the unconscious, the return of the repressed, I mean, it's interesting, that example you bring out about the fatigue in the healthcare industry and how people, uh, left, left healthcare and it seemed like as the pandemic got on, at the beginning of the public was very supportive and grateful to health care. But as things went on, some people went down the rabbit hole and started lashing out at health care people. And you'd hear about how there's more violence in the hospitals. People's civility was leaving them. And I know I was in the hospital several times during the pandemic with, with my family members. And it was just, it's alarming to see the atmosphere that was being created. In society and how people were treating health care workers. And yeah, it was just alarming. I think we see that in education as well, especially here in Ontario, where teachers were on strike before the pandemic. And then when the pandemic started, the government quickly settled with the teachers. But there's this, the government was kind of trying to do wage suppression and, and attacking the public delivery model here towards. It seemed like to go towards a more privatized model, but then it showed how important education and health is when the pandemic struck, that that was the front line, like I think about what you say, how your, your children really missed out on school and the social interaction with others. Mid pandemic, I haven't seen a lot of political change, which I hope we would see, kind of trying to address some of the inequalities of before times. But it seems like it's really status quo. And I wonder if we're going to see a lot of change, but it's Medicine is war, and body is machine. Fascinating. Thank you for, thank you for sharing that. And our second question on submissions to the COVID journals in the form of a pandemic question. And this one was submitted by Shane Wang and it deals with apprehend apprehension, being overwhelmed and helplessness. How did we do Facing the Unknown? this particular piece is by Shan, Wang, who was, uh, a nurse's aide during this time. I think Shan's gone on to a career as a nurse, I think. but was a nurse's aide in a, in a nursing home. I was super pleased. Uh, I was super excited, I mean, in the, We were able to publish the story thing, not the, I'm, I'm, I'm so thrilled that Shan had to go through this experience sort of thing, because it's an actual record of a racialized woman, not being paid very much in a, Quebec nursing home in which, um, you know, the disaster was rolling through at the worst time of the pandemic in which, elderly people were in very, very difficult circumstances with high morbidity mortality, which people, of course, which is a, what was a very difficult time for Shannon, for people with loved ones who were elderly and were terrified, because they couldn't visit them and there was COVID 19. You know, all that all that disaster. So that that's what the story is about. I was pleased about it too, because it was one of the few submissions that we received that was, in the model of Defoe's Plague Year, right? So it was, uh, it kind of connected us historically back to that very famous landmark book. to connect directly with the question, we, uh, we faced the unknown. with our predictable bias. So, I would say that the recognized deficiency of health care pre pandemic was the lack of resources and the inability to do all the things for all the people with too limited staffing resources and, you know, and money. and so, uh, when the unknown came, the same old problem became a much bigger problem, right? And so Shan refers to not being able to do all the things for all the people and all the time and had to budget and ration, uh, the things that she was able to do, uh, for the people in the, in the, in the healthcare home. So we faced the unknown the same way we faced the known. And we've, we faced them, but we, we did it even worse. So that's, that's one answer. Um, the, uh. The story that she relates, um, around not having enough, uh, PPE, around it having to be rationed, and, uh, that being a cost, that being a threat to herself and to the other aides that she relates, uh, her narration of the deaths of nursing home residents specifically to loneliness, because no one could come and visit them. The fact that she was told that she could only visit some residents once a day. to bring them food, to clean them, to care for them, because they were COVID positive. so it is, it's I think a new level of horrible, inhumane care. So, the other answer I have is yes, we did do things the same way. We still met the new challenges with the old inadequacy. But, another thing that we did is we created, uh, all of these rationales. Based on infection to justify, um, horrible treatment of those under care. So we, we uncared to care for people. That's what the pandemic did to us. I, talking about it reminds me of the headlines and all the, all the, just the horror of it. And yeah, there's, it's like where our seniors and our elders were, were turned into prisons and turned into solitary confinement. And I, I. It's disgusting. And I know here in Ontario, the government was giving long term care and retirement homes, uh, pandemic stimulus money, which all went out to, um, to shareholders. It didn't even get invested into the people, the underpaid PSWs, the strained nurses, the people in there didn't go to increase the quality of the food. Or any of those things. Maybe some of it did, but most of it seems like a lot of it went out to dividends to keep the rich rich during the first year or two of the pandemic. It just to me highlights everything that was wrong with our society in before times. And I don't see it getting better like I, I think we haven't learned or implemented from our learning around this pandemic. Pop changes well, we knew it was bad before and the pandemic made the normies know the people that actually had to seek care that otherwise it never needed it. Right. The people that had their blasphemal healthy lives. They actually had other healthy people around them maybe get sick, or they had to start worrying about their parents in this particular way, or they started to worry about their children in this particular way, and they saw tales of people like them who were getting sick, and they realized, hey, that healthcare system, people have been saying it's bad, but really, I wonder if it'll really be there for me. And here we are. Posty posty para pandemic or something and that system has not improved. In fact, it's only continuing to march on to get worse and it's not changing, right? No one's changing it. It seems like the attack on public health care continues and the wealthy vested interests want to move us to a more privatized model where more people will be left behind. And it's really. It's upsetting and alarming and like people that can afford the private care go for it because the waitlist and the hoops you got to jump through for the public care is just getting longer and longer and longer and it's, I hope we can reverse this shift. Because I think our strength as Canadians is our, our public healthcare system. But, we're so lucky here today on the pandemic show stories of the pandemic for the people of the pandemic to be talking with author, doctor, father, husband, Shane Nielsen, and playing our hit game submissions to the COVID journals in the form of a pandemic question. And our next submission was from. Christopher Blake and our, uh, Bongo Guy in Lockdown. And our question, how did Bongo Guy in Lockdown come out of the pandemic? Oh, I feel for Bongo Guy. Um, you know, I, I actually, uh, my heart goes out to Bongo Guy. He's one of the tragic figures, I think, in this book. so quickly for, listeners, the frame of this piece, it's, it's written by Christopher Blake, as Dave mentioned, and it's a narrative about a physician living in a Toronto neighborhood. Uh, where there's a bongo player, an unknown bongo player who pre pandemic would play on the weekends, for a few hours, uh, a day during, during the main part of the day, maybe only one day a weekend, but it was all, it was on the weekend and, you know, it was contained and it was, let's say, very, very appropriate, you know, for that very appropriate city, it was within the bounds of, uh, propriety, let's say, it might be annoying, but, you know, it wasn't too much, but then the pandemic came. Thank you. And Bongo Guy, apparently, was bongoing, uh, during that first lockdown, um, all the time. He was, uh, bongoing day and night, and he was bongoing in a particular way. He was playing in a metronomic fashion, so he was beating the bongos, but he was, he was doing it in a regular and kind of atonal, if you will, way. It was just this, uh, Grating kind of, kind of sound as if a clock were repetitively going off. There was no rhythm to it. It was just a regular kind of beat. And, uh, Christopher Blake narrates his, uh, frustration with this noise having to hear it all the time. And he, and I, I'll spare you the story, but we, we lose Bongo Guy. Bongo Guy gets told to knock it off by an irate neighbor. And... And Bongo Guy, really, for all intents and purposes, stops playing. There's a little bit of spatters here and there, but he stops. And then he's lost to us, so to speak, in medicine to follow up. We don't, we don't know what happens to Bongo Guy. you know, that is a metaphor, for sure, for suffering, um, in the pandemic itself. Clearly, Bongo Guy was not only expressing his distress, but also, um, broadcasting our own distress, like, as a receiver through him. And the fact that he is lost to us, um, also has its own metaphorical implications. So, uh, of all the characters in the, in the book, um, that people write about, he's Bongo Guy, because it could have been a, could have been a lady, just to say, or a non binary person, not to say it's a guy. but this Bongo Guy, I feel for Bongo Guy. Like, Bongo Guy, Bongo Guy was suffering, like the rest of us, and I wonder if he's okay. I hope he's okay out there. Bongo guy. We hope you're okay out there. And it's interesting to hear how somebody playing the bongos, you could hear the change. Associated with a lockdown in their music and then it started to get on people's nerves and then they asked Bongo Guy to stop and yeah, interesting. Thank you. Thank you, Shane. And our next question, based on a submission by Margaret Novacek. What was missing in our question? What was missing during the pandemic, Shane? I'm gonna, to answer that question in general, like truly generally in terms of my experience and knowledge and subjectivity is too broad. So I'm just going to answer that question in terms of what Margaret was writing. Okay. And. To say in her, her, uh, her take is kind of emblematic. Like, it's not completely representative, but it's emblematic of a larger medical practitioner experience, healthcare worker experience, I think, so it's fair enough to do, um, but, you know, what was missing? So Margaret, uh, writes a piece in which she talks about her, the way her practice changed, during the pandemic. She's a medical geneticist, uh, and she describes her clinic work, you know, day-to-day stuff, seeing people, um, but then, uh, narrates how. In the pandemic, everything switched to virtual care and she would have to either talk to people on the phone or, um, deal with, uh, things he was screened. Uh, which most people who've seen doctors have done healthcare stuff know that, you know, the deal there. Um, but she talks about what is missing in those kind of encounters, both missing for her and missing for her patients and their parents.'cause she's a, as a medical geneticist, a large part of her work is of course with children. So, um, she misses touch, uh, she misses being able to touch people to reassure them in moments in which they're feeling grief. She misses touch in terms of the physical exam, which she still needs to perform on people at some point, you know, even if it's virtual, it will eventually be deferred, she'll have to do it later. But, you know, when someone's in front of you and you're able to perform an exam to be able to examine their abdomen, for example, you kind of manifest that you care, like in the actual hands on action. there's something that transfers between patient and doctor, I think. There's a recognition that they're there and that, you know, that the doctor is there and that there's care. There's just something about appropriate physical examination that, uh, I don't know, it's part of the magic of getting better in some way. and, that's missing for both patient, that's missing for both patient and doctor. There's also, like, worries that, you know, she's not of use. Uh, you know, as soon as you begin to drift away from your regular way of doing things, you begin to wonder just how necessary you are for the operation of a larger hospital. Uh, so there were a lot of things missing. there were a lot of things missing for Margaret, and I think there were a lot of things missing for both patients and doctors, obviously. in the pandemic, one last thing she noted actually was, um, by not being next to somebody, you miss the really subtle things that you'd otherwise, that you otherwise would have picked up on if you were seeing people in person. So she, you know, she has a particular anecdote about, a mom who has a really, protracted, a small chin, so to speak, and It was worried about a child, her child, on ultrasound. It was believed that there was, ultrasound finding by the radiologist of a jaw that was pulled back, erythrognathia. And... When she was seeing the mom, on camera, it was actually the first, it's kind of a reverse version of what I was talking about, the mom, um, didn't have a mask on because it was a virtual appointment, and, Dr. Novachik was able to see that the mom had a small chin and was like, well, that's the reason why that's there, being able to put that, that connection up. So that's a weird, I guess that's a weird instance of, a reverse kind of situation in which. the virtual nature of things actually, put two and two together. So it can go the other way too. interesting observations. Thank you. And our last question for submissions to the COVID journals in the form of a pandemic question, documenting the challenges from a healthcare perspective, based on, Arundhati Dara? submission was by. Dara and Sarah Frazier. unconventional conclusion. Is there an unconventional conclusion to the pandemic? Uh, and just to, just to give my 2 cents first, it's like so many, and I mean, sometimes I feel like the pandemic's over too, but, but it's not and then is there ever gonna be an ending? Are we ever gonna look at Covid in the rear view mirror? Dr. Shane, what do you think? Well, I think we're in the para, the post para era, right, my, my coinage of it. It's not over and we know it's not over, but it's not like it's lingering either. It's still active, and what are we supposed to do in this era as we, we stumble towards, uh, Our previous lives and largely have resumed them, but we do so with the knowledge that we're doing it at risk. And what really is the quantity of that risk? And what should we do to mitigate it? And these questions kind of hang over our heads. and what do we do, what do we do with them? Some people opt for, you know, uh, ultra mitigation of risk by walking about still in 95 and, hand washing gear and things like that. And other people are. Not, not doing that doing the opposite of that. we, in some ways, it's an extremely conventional, uh, path that we're following, like Howard Merkel, like how I mentioned before, we're trying to forget it as hard as we can. And, uh, many people are doing that to great degrees of success. we also know that it's not unconventional to, unfortunately, in terms of the experience with the 1918, Spanish flu, We still have, we still have that critter, circulating around, in an unbroken line back. we create vaccines for that, that we immunize, uh, high risk populations with each year. just like we're continuing to march on to do with Covid. So our experience here is, you know, is established in a way. but the, the unconventional, I think the unconventional, part. Of where we're at now, is that we have, gathered together, I would say, just in terms of this book, we've gathered together, people who, um, have documented their experiences, and have thought through them, reflected on them, some of them have written about them poetically, some of them have written, some of them have done images like Helen Tang, They've done images, documenting their experience, and there's an active effort here not to forget and to convey, what that healthcare experience, uh, was like. So an actual time capsule created, uh, within a book covers to, explain and remind and, uh, perhaps even challenge. This, the unconventional, I think, nature of the experience that we have now is we're finally dealing with a new one. a new pathogen spread worldwide and had very great consequences. And so we're reminded, I think, of our vulnerability, and it's a reminder of a time that we weren't alive for, way back around World War I. so the unconventionality is that we're, uh, we're being, our memories are being, you know, powerfully refreshed. And we have no one with lived experience with which to explain to us, what that was like, so we've recreated in another sense in a different era, what, what, what that experience was and our knowledge of it, and it's occurring in a much more modern, Technological conditions and much better health care conditions. but what's interesting when one looks back, on the history of things is that we're, we're recreating the fear and the terror, which was, uh, equally present back, in that time. So in many ways, I guess there's a conventional kind of nature to things, but the unconventional nature is that's happening to us, you know, as if for the first time. And as you say, as you say, this is just going to keep happening. there's, this is just going to keep happening. This pandemic was largely predicted, you know, it's been an inevitability. It was called an inevitability. Um, our public health officials reflected upon its inevitability and in their ultimate wisdom decided that the population really didn't need, stockpiles of PPE. Like this was an actual decision that was made pre pandemic by Public Health Canada. and I don't know if we've made, uh, any sort of significant changes or differences for the future in order to, prevent this from, Happening again, but, maybe a small little stab against the dark with a bunch of, health care workers. Telling people, you know, what it was really like. Maybe that's the most we can do. Thank you. And now moving to our second game inspired by Nardwuar, the human serviette in Vancouver, British Columbia, Canada. We are going to play. Poem title in the form of a pandemic question based on two poems you submitted to the suspect week, which was recently published. I'm going to just read the poem first disabled love by Shane Nielsen in love and in love. I said to COVID. I said in love, in love, in love, like my son says in love and in love with love. I'm in love with love. I don't follow the poets anymore. They are not in love with love. And love is in love with love. It prefers its kind, its own self, its reproduction, it's cleaving and cocooning and spooning spoons and cocoons and clefts. And my son, he's spelling, m o o n, moon. On the sidewalk, and H A P P Y happy. And I ask him to spell love, and he says no. You just want me to, and I say, it's love. I want for you, and he says okay. And I give him the capital letters. L O V E, it's as if I said P A I N, but he doesn't know that, he just lives it like me, we too, in love with love, and it's love that we're in love with, love the poets, won't say love, but I will say love, L O V E on a suburban street, to Toronto I shout love as fully wild and domesticated strange. As loving being as L O V E T H I N G and he's humming it now too, bent with chalk, making a big green blotchy heart, in love with love, I'm in love with love in love. With love and loving love. With love and love it's love. And love is love. And that leads me to our first question here in our second game. Pandemic title, poem title, excuse me in the form of a pandemic question. How did the pandemic impact disabled love? It's as I mentioned, uh, earlier, I think the intensification of the time spent at home, strain of, the strain of care, not having any sort of supports as you, as you were familiar with, the strain to get supports in your, in your case, we weren't able to, we weren't able to kind of get any help in ours. and just having that, uh, intensity and that increased difficulty and the unhappiness that one has to deal with because, you know, I'm an adult and I'm not intellectually disabled and I'm able to occupy myself. You know, I can, I might be sad, but I can rationalize that. I can say, you know, I can do this. I can do that for myself. I can, I can watch this show. I can call up someone. I can, I can do all sorts of things. But for my son, he's dependent upon structure and routine, and he requires, he requires one to one care, and he got lost so much from being home, not being able to go to school, not being able to interact with his friends, not being able to have that sense of accomplishment, just not being, you know, part of that rhythm of his life, which he found meaningful and which was so supportive, it, It had an impact on him, I think, that was disproportionate, to, other students who might not be intellectually disabled, although, you know, it's terrible contrast, it sucked, I think, for all the kids, but, you know, you can't, you can't actually do, um, virtual care for, you can't do virtual school for my disabled son, that's not a possibility, so even the model that was, uh, the backup, as provided, you know, the resuscitation, the maintenance, the practice Which, of course, was inadequate for our normative children. it wasn't, uh, it wasn't something that was even doable for my son. so we were in the place together. My son had his needs. and my wife and I had our own responsibilities that we needed to meet, me being a doctor or being a veterinarian. it was very, very difficult. It was very, very intense. And one of the things I'd often thought, Dave, before this, before the pandemic, but really was reaffirmed in a horrible way by the pandemic was, uh, you know, you never really understand how inaccessible the world is, uh, until you have a disabled child, you know, my, my son could be more disabled than he is, I guess, if that's an even non purpose way to describe it, or a non grotesque way to describe it, but having a disabled son, you really begin to see just how entirely the world is, is made, you know, for the normal. It's, Entirely made for them, and any sort of deviation from it is an inconvenience to, something worse than that, you know, something more dire. So, the pandemic, if, disabled people will, can really attest, to this, um, it was abandonment. some people who had really significant requirements for care would just left. Some of the situation with my son was unpleasant enough, but there were people who required, like, 24 hour care needs and things like that. Uh, respirators and all sorts of stuff. they had to get through that themselves. So to say it was difficult was even more difficult. Yeah, thank you so much for sharing your experience with us and other people because I know it's, it's helpful for us all to hear, stories of shared experience. I think about some friends I have with that have a, one of their children has some health problems and they said it was just one of the hardest things ever. Then the kids got COVID and the parents got COVID. So they had all. It just was even more complicated as a result, but have things gotten easier now that we're going through this COVID still here, but we are going through the great reopening, are things getting better you think again for disabled love, although it will always have its challenges. I think, to my knowledge, at least, well, to begin with, in my son's case, um, he's back at school, um, the regular routines have started, we're able to enroll him in disability centric, recreational activities in the evening on occasion to keep him engaged and healthy. So, they're, they're a little, they're much harder to get now. They're still, You know, they're still wobbly, and haven't yet completely, solidified and become reliable, but they're there, and they were gone for the longest time. but, you know, that's not, that's not unlike the fact that they were gone for my daughter, too, who's six, so going through the pandemic, she was three to five or something, you know. I mean, pandemic's still here, I'm just using, you know, the parlance. they were gone for her, too, so it was kind of a wipeout, for everybody. But he's, he's, but largely back. I mean, that would be my, that would be my version of things. He's largely back and we're glad for that. And things are better for sure. because being stuck inside and not being able to take him anywhere and do things with him, other than to take him to a place that he didn't want to be and doing something he didn't want to do. I mean, all the places that my son were familiar with, he did not go. It was horrible. Yeah. He was stuck inside. that was hard for everybody, but that was particularly hard on him. for other disabled people, I think that, um, services are largely ramping up, just like I said. if they're not already back, but I think that COVID has had a, speaking very generally and broadly, and I don't mean to I don't mean to speak authoritatively about all situations, but I, I do know that the healthcare system took a severe knock as a result of COVID and, uh, it's, it's previous rickety natures. It's now threadbare. the wait lists have increased, the provision of care is getting ratcheted down, you know, there's always hours and discussions about these things, uh, you know, the nickel and diming and the, the kind of the bond fight to, to get the public system to do, to provide adequate, uh, care for its, for people with chronic illness. That's, that's, that's more intense. but it's better than it was. Yeah. And I think our healthcare system needs a miracle. But which leads us to our next, our next poem, redefinition of the miracle. I'm first going to recite the poem, and then I'm going to ask you the question for our game poem title in the form of a pandemic question, redefinition of the miracle, a poem by Shane Nielsen in the suspect weed where all is lost and reconstituted. Not the miracle, not the miracle, not the miracle. But the simple fact, how could it be, and why not love or care or what passes for human. But when the child knows they can choose the dust and make angels, devils, castles, and other names for love. Thank you Shane for that poem. And our question, Was there a redefinition of the miracle as a result of the pandemic, Yes. without explaining my version of what I think the poem is, lockdown, prolonged lockdown, created a new goal. So, I can't say that I was the most career focused person. I wasn't in kind of spiritual life for a while, largely because I have to, you know, stay alive, all based on my illnesses. But I still had my, I had my ideas about what I wanted to do and things I wanted to get done. And the pandemic. Kind of ripped the needle up off the record and, said, you know, these things aren't going to happen and in the same kind of breath, I think that same voice that, I don't know, that intrusive thought that was going through my head said, and they don't matter. so that was freeing, I guess, but when at home with my, my son, and my daughter too, but you know, there was no, it wasn't a great difficulty with her, you know, she was normative and, the rather general parenting strategies that, you know, are intuitive and stuff worked well, uh, with my son, it was a different story, and we're together and there's this unpleasantness, there's this sadness and anger and frustration and boredom, expressed in, disruptive ways, difficult ways. before, before the pandemic, my son had his regular routines and he had his things that he'd go to and he was his version of happy, you know, it was his version of content, I guess. but then that was taken away and had its effect. And so, before the pandemic, it was always. I didn't think this way intensely, but maybe there was this sublimated desire that, there will be some kind of thing, or some kind of medication, or some kind of fix, or some kind of biomedical intervention that can be done that will give my son some relief, and, and will make things better for him, you know, the good old cure, or some of the idea, you know, that, that canard, or something like that. but I left, I left that alone completely, kind of covered that, banished it, banished it from my desires because the pandemic just made me want my family to get through the day in a way, an intact way, let's say, intact. the miracle may be in one sense before it was like, sure, the pandemic made it more. Play, can we create the conditions for you to be comfortable playing and perhaps some register of, happy. Thank you, Shane, for sharing your story and talking with us about these three, the, the book you edited, the COVID journals about healthcare workers during the pandemic, your poetry anthology, The Suspect We with Roxanna Bennett. As well saving. And when I think about the pandemic and miracles in my context, I think one of the miracles was that first year of the pandemic, how the whole world was able to change quickly. People were able to work virtually in jobs where before they had to go into the office every day. That was a big, that was a big change. That was a miracle. people cooperating around the world on vaccines, people cooperating and making changes as a result of the virus. To me, those were miracles, but I'm looking for a miracle now in the great reopening of more compassion. And coming together and addressing income inequality and structural racism. And I hope we can have a miracle around those, those issues moving forward. thank you so much for your time and your unique perspective. Thanks, Dave. Love the pandemic podcast. No one's alone on the pandemic show. Thanks for listening to the pandemic show. We're all in this together, and we're glad you're here together with us physically distance with us@pandemicshow.com. Pandemic show is on Instagram, Twitter, and Facebook, stories from the pandemic for the people of the pants. Do you have an interesting pandemic story and want to share email us@pandemicshowedatgmail.com. Thanks to all our guests. Thanks to giant value for seeing us in and letting us know everything is going to be all right. No one is alone at the pandemic show.