Resilient?

Someone called me resilient.

I’m just doing what’s next. Breathing in. Breathing out. I’m a big fan of breathing.

I try to be grateful for what I have (left) every day. I try. I try not to dwell on what I’ve lost. I try. Focus on the joy. But wow, that takes time. I had to live through pain to do that. That pain changed me. It burned me down to my elements. Maybe you know what that is like. Pain is terrible. Pain takes too much out of me and leaves me without the slightest bit of grace. No one would have called me resilient then. Maybe I don’t really know what resilient means. For now, the pain is mostly over. I’m grateful.

When I’m not in pain, I can focus on joy. The things that are beautiful. Someone said that 80% of what is beautiful and true can be found in a ten minute walk from your house. Flowers in sidewalk cracks. Kids. Dogs. Today I saw an eight point buck in the yard across the street. I realize not everyone is going to see that across the street from them. And he was sitting there like he owned the place. And I think he does. He was so still, I wondered at first if he was a statue. Then he blinked. I don’t know where he came from. Wonderment and curiosity are part of what is beautiful and true. If I had any energy left today, I would walk over there and see if he is still there.

I don’t know what people mean when they say words like “resilient.” I wonder if that buck knows? Is he resilient, living through the loss of habitat and finding a spot to be in someone’s yard? He’s just adapting. He’s doing what’s next. Breathing. Resting.

Maybe the worst word is “brave.” The idea that I have to be brave to live my life, to move forward every day with what I’ve got feels vaguely insulting. Nope. I’m just doing what’s next. Or maybe I’m looking at it wrong. Maybe we’re all brave. I’m no more brave than you when you have to get on a crowded bus or go to that job or to Costco or just live in this f’ed up world. I don’t want to be singled out just because I got sick. I don’t have to be brave to live my life, at least, I don’t have to be any more brave than you do. I have to be gentle. Gentle with myself. Understanding. I have to breathe.

As for “recovery,” that’s a word about nostalgia. To think about recovery is to look backwards, to look to the past. I’ll never be like I was and I don’t want to live in the mental and emotional space where that’s what I’m longing for or that’s the goal. Because it’s impossible. We can’t go back. Time only moves in one direction. I am what I am today. It is not what I was yesterday or last year. That’s the part I’m not supposed to say.

So I say, “Yes, I’m doing better.” Better than what? Better than I was five months ago. Worse than I was a year ago.

I am alive. I’m trying. That is enough right now.

From your immune-compromised friend

Thanks for inviting me. I really appreciate it, and I really want to do the thing you have invited me to do, but for my own peace of mind, I have to remind you that I’m immune-compromised before we finalize our plan.

I know that on some level you know this about me already, but you probably don’t fully appreciate what it means for me in my daily life. There are a lot of things that just aren’t safe for me anymore. I don’t get to travel much or go to concerts. I miss that. I live with windows open and HEPA filters on. I don’t entertain much anymore. How could I ask people to mask in my house? I never get to not think about Covid. It’s a bummer.

My doctors tell me to do everything I can to not get sick. They tell me to get every Covid vaccination as it becomes available and never to wait for something better. I also recently had to repeat all of my childhood vaccinations, pneumonia, shingles and anything else they could think of. A cold (that is, an actual cold not a “pretend it’s not Covid” cold) would be really bad for me. Covid could kill me, or worse (yes worse) make my health much worse. That’s a lot of “worse” in one sentence. I don’t want a much smaller life. I know what it is to be sick. And I love my life. I love my friends. I love living! I’ve fought hard to get to recover to where I am and I won’t go back.

So I mask. No exceptions. I have to protect my baseline, low though it may be now. Private home or public space. This makes a lot of people uncomfortable for some reason and it makes invitations difficult, especially if the invitation involves food or drink. Sometimes I don’t quite know what to do, so I decided to write this post, knowing I would occasionally send it to a friend who has invited me somewhere.

I would love to do this thing you have invited me to do, go to this place you would like to go, see this show, etc., but I will have to mask. It’s not about you. It’s about me. (And it’s about the venue, the amount of time, how many people, if the windows are open, if I can stand by a window, and so on). If there is eating or drinking, I’ll have to be outside. And not in a crowded place. Even outside, I am careful. Transmission, while less likely outside, is still possible. Like I said, I never get to not think about Covid.

So, as long as you are aware that I’ll be masking inside and eating and drinking outside, staying away from crowds and so on, I feel excited to say yes to your kind invitation. Maybe you could ask me again after you get this, and I’ll know we are on the same page and you are okay with it too.

Oh, and because nothing goes without saying, let me know if you are feeling under the weather. We’ll do it another time. And I will do the same for you.

 

Hospital Acquired Infections and other disasters of the modern age.

I am home from the hospital for the six or seventh time in the last two months or so. I’ve been in the hospital so much, I’ve actually lost count of my stays and, strangely enough, sick people aren’t that good at record keeping, especially when they are sick enough to be in the hospital. With help from loved ones, I could rebuild the chain of events, but I don’t want to. I’d be just as happy to forget it. Anyway, this morning I tested negative on an admittedly unreliable rapid antigen covid test* on day 3 at home and I will test every other day until day 10 to do my best to make sure I did not pass along a Hospital Acquired Infection (HAI).

My hospital admissions include more than 30 overnight stays and two stays that were a week or more. I think I’m in a pretty good position to talk about the state of masking in our hospitals and where we’re at with Covid in BC hospitals.

But first, I want to note that I have talked to, I’m guessing, over 100 medical professionals during this time. That is a low-ball estimate for sure.** Only one asked me about covid. One. He was an ER doc who saw on my record that I had picked up a paxlovid prescription the day before. (I keep one on hand just in case. My last one had expired and I am  medically complex. For me, it’s like having an EpiPen. Hopefully, I won’t need it.) I explained this to him. No other doctor who took my history, NOT ONE, asked if I had ever had Covid. This seems like a big failing to me. The number of illnesses and diseases they screen for is staggering. But they haven’t asked about the most likely culprit causing people to be ill since 2020. They seem not to know that many people develop Long Covid after their initial infection appears to be over. They don’t seem to know that Covid is a vascular disease that can affect every organ in the body, including the brain, and even our immune systems. They don’t seem to know that Covid can and will complicate anything else we have going on. Why don’t they know this?

Only one of my doctors (I have at least 6 regulars and have seen probably 15 others between emergency visits and other procedures**) masks regularly, but I have seen even him walking around the hospital without a mask. At least he masks when he comes to see me. Some of the covid cautious community have written about why doctors might not mask. Have a look at Jessica Wildfire (OK Doomer) or Tern’s account on X/Twitter. I’m too tired to link to the exact threads. I have also written about it a little here and there. I think I’ve said all I want to say on the matter in an open letter to health care workers and in the second half of my post about Doppleganger. Have a look. I’ll admit, I’m a little obsessed with the issue of masking in health care because my life depends on it. My whole world has been health care for months now. But back to doctors, in short, we all contain multitudes—we are both careless and caring. Doctors too.

I’m not going to vilify the people who have kept me alive. But I will say it is time for some medical professionals to take stock. Many of their colleagues are showing leadership which they should emulate. For example those at the Yale School of Medicine have done tremendous work on understanding Long Covid and doing the job that public health should be doing. Look it up, and their ground breaking study with Dr. David Putrino at Mount Sinai.  And while you’re at it, read some of Eric Topol’s excellent public education work. These will lead you to more resources.

Anyway, the first couple of times I was in hospital, there was a mask mandate in health care settings. It meant I was safer. It was not perfectly enacted. The entry lobby is not well managed. There are still administrators without masks and behind plastic screens. Pure hygiene theatre. But I won’t criticize them for having multiple hand washing stations visible everywhere. It’s a hospital. This is good practice. I would suggest they should add masking signs to all of those.

In all of my hospital visits, I wore a mask (3M aura is my mask of choice) in all public areas, in hallways when porters were ferrying me to multiple tests, in procedures rooms and so on. Porters always wore masks. Good management there. I appreciated it so much. I did not mask in operating rooms, obviously. One would hope those would be reasonably free of harmful viruses or bacteria, and anyway, you can’t mask while intubated. I was unmasked in recovery rooms because I was mostly unconscious and unable to do so. I also did not mask in my own patient room. I was fortunate enough to be in a hospital in which most patients have their own room, at least on the cardiac and complex surgery wards. And, the window in my room opened. I knew I was taking a chance, but how could I possibly mask for a week straight? It’s not reasonable. That’s why everyone else has to mask, so patients can get a break, sleep, breathe easier, and heal.

My last two times in the hospital were after the mask mandate was removed. The first time, I put a sign on my door asking anyone who entered to mask and a nurse was kind enough to leave a box of masks by the sign. Everyone except one person complied, and no one complained. The second time, we were a week further away from the lapse of the mandate. Another sign went up at my door. This time, I got push back. One nurse came in and demanded (the tone was demanding) to know why I wanted people to mask. I looked at her as politely as I could, and  said, “Covid.” One word. She looked disgruntled and said, “But you’re not masking.” Again, I was in my own room. I said, “I just had open-heart surgery and a lobe of my lung removed. I mask outside this room.”  She warned me she could not make anyone else wear a mask. She actually said this with a little glee. But when she came back, she was wearing one, and about 80 per cent of people who came into my room did too. I was not as safe as the time before. But again, I kept my door closed and my window open.

Maybe you’re going to come on here and tell me how to do this. Maybe you’ll tell me my measures are idiotic. Please. I’m tired. I’ve done my best. Knock on wood, I’ve avoided a hospital acquired infection 7 times. That includes MRSA and other plagues of the modern world. (Excuse me while I literally knock on wood.) As for you, you do you. You probably won’t be in your own room in a newer hospital with decent HVAC. If that were me, I would bring in every kind of filter imaginable and mask much more. But ultimately, you have to eat and drink. Masks might slip while sleeping. You can only do so much. That’s why it takes all of us. It can’t be an individual effort.

On my last visit, I noticed in the hallways, procedure rooms and other public spaces that hardly anyone masks anymore. Maybe ten percent of people. I would often get wheeled by Cardiac Short Stay and see twenty or more people sitting in a row of chairs in the hall, all unmasked. They are there for pacemakers and all the procedures that can be done on a heart outside of an operating room. They are still serious procedures and if you’re there, you’ve got a health issue to care about. One way to care about it is to wear a mask. Do it for yourself, if not for me. Maybe I will finally put this issue to rest on my blog. If not, I hope it is because I have an update about how indoor air quality and masks are suddenly being seriously improved in public spaces. A girl can dream.

Meanwhile, Do No Harm BC continues its efforts to bring back mask mandates. Check them out here. Maybe add your voice to the project.

*Re bad RAT tests. It’s impossible for me to find a RAT test in my area of BC that is not expired and rumour has it the government is quietly ending free access to them. I also understand they are increasingly unreliable with the new variants. Why are we not investing in improving this important tool in the arsenal of preventing the spread of covid? Remember, many cases are asymptomatic: the only way you might find out you have it (and therefore take appropriate measures not to spread it) is to regularly test.

** Re my many procedures and doctors. To be clear, my gratitude to the public health system in Canada knows no bounds. Those trying to privatize it are the enemy of the public good, ableist, eugenicist, or worse.

The Grim Reader: Naomi Klein’s Doppleganger

 

Is Doppleganger the right book to add to The Grim Reader series? It has a breadth and scope that is deeply necessary. It is personal. It is political. It gives voice to all kinds of issues from our ecological crisis to rising fascism. So, yes.

On the surface, the book is about the unfortunate mix-ups Naomi Klein has had to endure between herself and Naomi Wolf. Wolf used to be a well regarded feminist academic, but at some point, she took a turn in another direction. The book that brought her widespread attention, The Beauty Myth, was good. Although it didn’t add anything new to the understanding of how beauty is used to hold women back (this was already well trodden ground), Wolf was a new, young, and welcome voice on the scene and gave the argument a new (and beautiful) face. I used her work when I taught Women’s Studies at the college level.

Meanwhile, Klein, became a well known feminist progressive, environmental activist and political activist. She is the writer behind No Logo and The Shock Doctrine. She tried for years to shrug off the mix ups between the two Naomis. Although harmless at first, as the years wore on, Wolf veered into territory that was anathema to Klein and mix ups became more embarrassing. Over time, Klein became interested in (and possibly obsessed over) how someone like Wolf could change her world views so radically.

Klein’s exploration into Wolf’s transformation brings her to a profound book about mirror images, doubling, or doppleganging. In a way, Doppleganger is a book about how we all contain multitudes. If you’ve ever asked yourself how your Uncle Jim or your mom or someone who you used to know as a great helper-parent in your neighbourhood school or volunteer at the food bank became a FOX News watching, conspiracy-minded, MAGA hat wearing, flag waving, vaccination fearing, Pierre Poilievre supporting, maybe even gun-toting, freedom screaming, convoy supporter, this book is for you. It actually helped me understand how it happens.

I have to admit that even I mixed the two Naomis up, a fact that I am embarrassed about now. I had thought that the incredible foundational error that Wolf made in writing one of her books, Outrages, was an error Klein had made in one of her new books. Oops. But because, in my mistaken mind, it was Klein, I shrugged it off as an “everyone makes mistakes” moment. It did not, to me, change anything about the brilliance of her earlier books, No Logo or The Shock Doctrine. But now that I know it was the other Naomi, can I extend the same grace to Wolf and say that this big mistake she made doesn’t change anything about The Beauty Myth? 

Sure. I guess.

It’s definitely harder because of Wolf’s turn to the right and the new company she keeps, like Steve Bannon. But it is important to give people like Wolf a little grace. How else can they come back?

One of the things Klein finds is that the difference between herself and Wolf and their increasingly divergent ideas is the difference between having a world view that is community oriented versus one that is more individually focussed. As Wolf’s shine wore off, she was all about finding another platform on which she could remain a darling. And find it she did. As a sociologist, I appreciate Klein’s observation that individual goals lead to different outcomes than more community-minded goals. I might even rephrase it to say that the difference between being Naomi Wolf or Naomi Klein is that Klein has a sociological imagination (with thanks to C. Wright Mills) and Wolf does not, or at least, does not anymore.

Klein writes, “These doubles share one thing in common: all are ways of not seeing. Not seeing ourselves clearly (because we are so busy performing an idealized version of ourselves), not seeing one another clearly (because we are so busy projecting what we cannot bear to see about ourselves onto others), and not seeing the world and the connections among us clearly (because we have partitioned ourselves and blocked our vision). I think this, more than anything else, explains the uncanny feeling of our moment in history–with all of its mirrorings, synthetic selves, and manufactured realities. At bottom, it comes down to who and what we cannot bear to see–in our past, in our present, and inthe future racing toward us.” And in ourselves. We all have an authoritarian toddler within us screaming for control. Most of us learn to get past that and live with others in a society working towards mutual benefit.

It is that simple. And that complex. And the road Klein takes herself on to get herself and her readers here is fascinating. Quoting prison abolitionist Mariame Kaba, Klein reminds us “Everything worthwhile is done with other people.” And we are going to have to understand all kinds of people to do anything worthwhile.

On a personal note:

I read Doppleganger while in the midst of a critical health crisis. I started reading it at home, had it with me for a week in the hospital and finished it when I got home again. In that period, I had been told my illness was terminal. Then the doctors found a way to save me. I post this two months later, after three more hospital stays, one of which included open-heart surgery. The fact that I can be (hopefully) cogent again is promising. I have yet one more very difficult surgery ahead and my current hospital stay will not be my last.

All of this is happening in a time when SARS-CoV-2 has been allowed to run rampant, as though it isn’t a killer disease, a disease that can affect every organ of every body, a disease that is chronic for many, a disease that is the source of a mass disabling event. I navigate this while trying to deal with my own non-covid related situation. Mitigations have been dropped in favour of keeping a society looking “normal,” that is, like it is 2019. As though we can choose the changes that happen around us constantly and reject some of them. As though we can keep our heads in the sand.

As of April 8, 2024, there is no longer a mask mandate enforced in BC hospitals. Some of my own doctors don’t wear masks and it makes me wonder if I can trust their medical knowledge. But the demands of capital have won out over the needs of sick people. It all became political and public health is now a joke, existing in name only. This is also considered within the pages of Doppleganger.

What’s happening to me personally is life and death. What’s happening to all of us collectively is life and death. The trend towards authoritarianism, the casual eugenics, (well, it’s ONLY those with co-morbidities that are dying, it’s ONLY the frail and elderly, it’s ONLY the disabled) and the genocide(s) taking place across the world are all related. Klein knows this. She looks at Hitler’s Germany, and specifically the life’s work of Hans Asperger who went from being someone trying to help children who were a little different live full lives to someone who was selecting which “disabled” children would die within the Nazi’s genocidal machine. Klein  writes, “Asperger’s jarring career trajectory demonstrates that, in just a handful of years, the same institutions and some of the very same people can shift from an ethos of care and curiosity toward a vulnerable group to one of callousness and genocidal cleansing. As if a switch has been flipped.”

I’ve noticed this with a lot of people throughout the pandemic. So has Klein. The admittedly weak and nascent efforts at community protection we saw in the beginning of 2020 completely turned around. Now wearing a mask or getting a vaccine is thought of as a bad thing by an apparently vast swath of people. Or maybe they are a particularly loud minority. Whoever they are, they have won. Protecting each other is a long-gone ethos. She cites examples of people on the vaccine-feaing, invermectin-promoting side saying the weak should die. And as a person who is now one of the weak, effectively barred from participation in much of society because no one is willing to wear a mask anymore or put any effort or resources into creating cleaner indoor air, I can tell you, it sure feels eugenic to me. As I mentioned above, even my own doctors don’t always wear masks. I’m sure they care about me (at least abstractly) and they have put a lot of their skill and effort into keeping me alive, but they just don’t see how careless they are.

Caring and careless. At the same time. For example, I have no doubt that some of those same people who were banging pots and pans in support of health care workers in early 2020 wouldn’t deign to put a mask on to save the health and life of a health care worker today if they had to go into their doctor’s office or to the hospital. Nor will they wear a mask to save their own life. Or mine. In short, we are “both this and that.”

And this is the key realization of Klein’s opus. Both individual people and even states can be “victim and victimizer at the same time.” One of her most extraordinary and helpful conclusions is that what makes the difference between going “there” and not going “there” is one’s attachment to a sense of community or society and an understanding of class. My sociologist soul rejoices at this conclusion.

Klein writes, “The disability justice advocate and author Beatrice Adler-Bolton refers to the mindset that has animated so much Covid denialism as ‘deaths pulled from the future’–which she defines as the judgement laden posture that frames ‘deaths from Covid-19 as somehow preordained’ because the people doing most of the dying were probably going to die prematurely anyway. Covid just moved up the timelines a few years, so what’s the big deal?” Klein states clearly, “this is fascist thought. More specifically, it is genocidal thought. It recalls the ways in which colonial massacres were rationalized because within the ranking of human life created by pseudoscientific racists, Indigenous peoples, such as the original residents of Tasmania, were cast as ‘living fossils.’ … Indigenous peoples were, in this telling, the pre-dead, with extermination merely serving to accelerate the inevitable timeline.”

I am not keen on being shunted aside as the pre-dead. I’d appreciate being able to keep every day I might have to experience this troubling body and all of the joy and love it is capable of manifesting.

The planet itself and our eco-systems are disabled now. Should we push up the timeline of our destruction of the earth because we are doomed anyway? Of course not. Our work must be care-based in this “time of planetary shocks and layered disasters.” Our most prevalent state is “chronic impairment,” says disability rights theorist Sunaura Taylor. Klein quotes her saying, “As a disabled person I recognize this as disability… What we live with in the present and will for decades to come, even under the best-case scenario, is mass ecological disablement of the more than human world, a disablement that is utterly entangled with the disablement of human beings. Given this, it seems vital to consider what forms of care, treatment and assistance this age of disability will require.”

On the final page of Doppleganger, Klein writes, “Negotiating that doubling [that is, the doppleganger]–between our younger selves and our older selves, between our public selves and our private selves, between our living selves and our dying selves–is part of what it means to be human.” My living, disabled self has a huge stake in all of it.

This is where Doppleganger lands for me. The mini-thesis inside the bigger thesis is about disability. I am in my age of disability in a world that is already disabled watching another mass disability event play out among humans during the sixth great extinction. I watch these events through wildfire smoke and sometimes through a hospital window. While there are still hospitals. There is something powerful and necessary about facing what’s real. I think constantly about words like accessibility and inclusion. I think about what they mean for me, for the forests. I think about what it means to truly respect every living thing, as it is, to know that it has an inherent purpose all of its own, even when damaged. Naomi Klein is still thinking about this. Her Doppleganger is not.

Read Dopplegnager. Tell me what you think.

 

An open letter to my health care providers: you are irreplaceable.

As you know, I’m in a health crisis. You are one of many professionals who are applying their skills, expertise, experience, and knowledge to helping me get through this. I appreciate you more than words can convey. Your care is the difference between life and death for me.
And I’m worried about you.
Many of you are not taking the pandemic seriously. You act like it is over and talk about it in the past tense. Covid, that is SARS-CoV-2, is a Level 3 biohazard, like tuberculosis. It is spread through the air like smoke. Once you get it, it often presents as a cold or flu, but it is so much more. It is a vascular disease. It potentially affects every part of your body, every organ (including your brain), your blood, and your immune system. It has long-lasting effects that we are only beginning to understand. There are a plethora of peer reviewed studies examining the harm that Covid can cause. For years now, some have suggested Long Covid could be a mass disabling event. It already is. Over three million Canadians have already experienced symptoms of Long Covid. Many people with Long Covid cannot work. The first major study of doctors with Long Covid in Britain reveals it has impacted the respondents’ ability to work and to carry out regular day-to-day activities. Almost one in five said they were no longer able to work because of their post-covid ill-health.
You are around sick people all the time. I urge you to wear a good mask, that is, a respirator. Yes, it would help me, but again, I am also worried about you. You are so important. So few people can do what you do. It takes years of training and practice and hard work. You studied for years to be able to do this. Your knowledge is so needed right now. And you are irreplaceable. Irreplaceable.
I have conversations with those of you who are obviously dedicated to protecting yourselves from Covid. You wear respirators and some of you wear face shields too. I appreciate the care you are taking. Some of you only work nights now or take only occasional shifts. Some of you have left full time employment. This is a huge loss for those of us who need you, but I understand. And I support you. It is safer. As one of you said, you have to protect yourself and your family.
Some of you wear the masks that your employer provides. They are better than nothing, and I appreciate the effort. But often they are not N95. They are not respirators. Maybe your employer, the health region, the hospital, the doctor’s practice, could provide better respirators.
Even though in my region, there is currently a mask mandate in all patient areas in hospitals, everyone behaves differently. Some of you introduce yourself and take a breath, peel off your mask for a second so I can see your face, and put your mask back on. I understand why you are doing that, but you don’t have to. I can see what’s going on in your eyes.
Some of you, particularly those at intake desks, still think being behind a clear plastic barrier is enough. It is not. Air travels over, under, and around these barriers and Covid travels in the air.
Some of you pull down your mask when we get into an important conversation, a life and death conversation, or when you are trying to make sure I understand you. Don’t worry: I can understand you through your mask.
Some of you wear masks in the hospital but not in your offices.
Some of you don’t wear them at all.
Masking is a vital part of infection control. It is a vital part of protecting yourself.
You are irreplaceable to me, as your patient, and to your other patients. There is no one else who knows what you know the way that you know it. No one else has your exact experience.
You are even more irreplaceable to your families and your loved ones. Irreplaceable.
I’m going to say something wild here: I love you. All of you. Even the bossy nurse whose poor mask wearing set the tone for the rest of the medical staff in that unit and left everyone less safe. Even you. You obviously have skills. You were the one who got everyone’s questions. You were the one who knew how everything worked. You are so important. We can’t lose you. Please, wear a mask. You are needed. You are irreplaceable. You are loved.
With gratitude and respect,
Your patient,
Jane