Tag Archives: Covid19

On Not Getting the Memo

There’s a doctor north of Kingston, Ontario, Sabra Gibbens, who still masks and requires her patients to mask. She wrote about it in the Canadian Medical Association Journal. Finding her article feels like finding some kind of rare bird or an exit sign in a corn maze.

Who is this doctor? Can I have one like her too? My GP “mask mirrors” now, which is better than nothing, but with this virus lingering in the air for nine hours, he’s not the only exhaler I’m concerned about.

Who is it that didn’t get the memo? Gibbens or her colleagues? Did she not get the memo to pretend SARS-CoV-2 is over or did her colleagues not get the memo that everyone is still getting sick and maybe part of their job is the prevention of contagious illness? Doctors are supposed to protect their patients, even when those measures bug some entitled cry-babies.

You know I’m losing my shit when I call anyone a cry-baby. But there it is.

I didn’t get the memo to stop caring about Covid. Or I got it and said, “Um, that doesn’t seem right.” At time of writing at least six people I know have had terrible bouts of it in the last two months.

Recently, I talked on the phone with an old friend coming out of six weeks of terrible illness. Too sick to call 911, at one point they were unable to breathe and certain they would die alone. But it never occurred to them that they may have had SARS-CoV-2. They report they are much diminished now. Others are sick but don’t test or even admit that what they have could be SARS-CoV-2. They have a mystery illness that lasts for weeks, and soon after post unmasked photos of themselves in restaurants or at events. I say nothing. Except here.

I remember many years ago when I lived in Calgary, there was an explosion a the Hub Oil Plant, which was not that far from where I lived. (Check out YouTube for some great video.) As the sky filled with black smoke, I started packing. Authorities were doing the “everything is fine” thing, but my eyes and lungs told my brain to flee and I popped the kiddo into the VW camper and off we went, far far away from the fire and the thick black smoke. As always, I was considered alarmist, even by my own partner, but sometimes you just have to listen to that little voice. Mine was screaming. Later that summer we were advised maybe not to eat our garden produce, but even that warning seemed to leak out without approval and was quickly expunged from the record. This was Alberta, after all. Absolutely nothing can be wrong with oil and gas.

Oil and gaslighting aside for now, (but do please read Sarah Kendzior’s excellent book, They Knew) I am similarly unsurprised by medical gaslighting.

It’s awfully difficult for a person like me, trying to live through an iatrogenic heart and lung disaster, to depend on the skill and support of as many doctors as I do, to trust their medical knowledge about my heart and lungs, while simultaneously acknowledging that they did not read the same memo as me.

Maybe I should print Gibbens’s article and tape it to my hospital door. For now, I’m simply grateful she wrote it. Thank you, Sabra Gibbens. Your patients have a real gem in you.

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.

Oh My Heart—And Yours

I recently received inevitable bad news. Twentyish years ago, when I was treated for cancer, I had chemotherapy and radiation. Everyone thinks chemo is hard (and it is) but radiation is also a very big deal. Radiation affected my heart and lungs. I have worked hard over the years to keep my cardio strength up. But I can’t keep ahead of it anymore. Radiation has calcified my aortic heart valve. I will undergo open heart surgery in the spring to replace it.

(I’m begging you, please don’t send medical advice.)

I’m ok. I’ve always known this was a possibility. I plan on living through it. I’m grateful to all the people who gave me this last twenty years. I got to see my wonderful child grow up and become the most superb adult.

And let’s face it, when I’m given that long list of side-effects and asked if I understand, what I hear is “Do I want to die now or later?” My answer is always, “Later.” I have a feeling I’m about to sign off on another bunch of those.

I have things I say about this turn of events. “The chickens have come home to roost,” is one. When I’m feeling slightly bitter, I might say, “Cancer: the gift that keeps on giving.” And now, a new one via my friend Marnie, whose parter has had open heart surgery twice: “It sounds dramatic, but remember, for the surgeon, it’s their Tuesday morning.” Good perspective. Thanks for that, Marnie.

I will stay in the hospital for seven to ten days. There are a lot of things to worry about and contracting covid shouldn’t be one of them. Currently, there is a mask mandate for hospital workers in my jurisdiction, but who knows if it will still exist in the spring.

I honestly don’t know what kind of monster would visit a cardiac ICU without a mask on. Or any part of a hospital.

Can you imagine having that covid cough after your sternum has been cracked open? I can’t.

This is where you come in.

I hear people lamenting the state of the world. It is lamentable. They ask, “What can I do?”  Whatever the issue is that you are lamenting, the answer is to take action. Action (hopefully informed action) fends off depression, for one thing. It’s great for that. It gives you a sense of control and gets you out of your own head, often because you are helping other people.

If you are concerned about the suffering and sickness all around you, the first and easiest action you can take to lessen it is to wear a mask. I’m going to say something harsh here. Get ready. If you are not willing to wear a mask, take a hard look at yourself. You really don’t care about the sickness and suffering all around you.

I cannot think of a situation that is not made worse by the pandemic and that would not be eased if SARS-C0V-2 were brought under control. Palestinians are getting covid while being bombed to near oblivion. But if genocide is your goal, covid is your helper. Climate disasters are made worse by people getting covid. Any illness or weakness you have lurking in your body is made worse by this vascular disease that can affect every organ in your body, including your brain. The decimation of your immune system means you will be sick more often. These are all known things. Get your head out of the sand and do some reading.

I’ve been wearing a mask since the beginning. It’s part of my life now. It is my normal. It is me, living with covid.

I am no longer willing to cut people with privilege and means any slack on this. If you are unaware of the criminal obfuscation going on around the airborne nature of this disease by public health and our so called leaders, it is because you don’t want to be aware of it. That’s on you. I wash my hands of you (knowing that hand-washing doesn’t do much to stop covid.) And if you are one of those public health people or alleged leaders, start doing your job. Start with distributing free masks. Then work on cleaning indoor air in public spaces you are responsible for.

I’ll still be active here. I’ll continue to talk about covid, about this new foray into the heart of me, and I’ll carry on with The Grim Reader. The pandemic and covid are conjoined twins of disaster. It’s important we keep trying our best.

And for those of you who will newly mask or mask again, thank you. For those who never stopped, thank you. We are all connected. We can’t ever forget that.

On Languishing in the Pandemic

Month 13–or is it 14?–of the pandemic, and I am languishing. I did not have that particular word in mind until I read an article about languishing by Adam Grant in the NYT. I had been thinking maybe it was ennui, or maybe disinterest, and was sometimes even wondering if I had become hopelessly lazy.

That’s not it.

I told my husband I was unmotivated, which is true. Confessed it, actually. I am NOT normally an unmotivated person. In his article, Adam Grant says something about being indifferent to indifference and that feels right. I am indifferent to my indifference, disinterested in my disinterest. Maybe you feel the same.

I know I’m lucky. I can work from home and shelter where I am, relatively safe. I get groceries delivered. I am grateful to all of the workers who are keeping us all going and I advocate for their safety literally every day.

Part of it is certainly that while the world celebrates the arrival of vaccines (as do I), Ontario is worse off than ever because of a feckless provincial government. We have higher case numbers than ever and our ICUs are overflowing. Refrigerator morgue trucks are next. It didn’t have to be this way.

So, I try to focus on what I can control. I have a new project on the go. But I am not writing much now. My concentration is poor. It’s also my fifth crashiversary this week, which doesn’t help. Five years of brain injury. My lack of concentration isn’t just about the pandemic. I have been in some state of languishing for a while.

And even if my writing is stalled, there is other work to do. As two projects make their way through to publication, they need bits of my attention. I will get a galley to proof next week. There are questions about marketing. A plan must be made.

I have other projects I could pick up outside of work, things I would usually enjoy. I have wool enough to make six hats which I planned on giving as gifts next Christmas. I need to sew the collar on a summer shirt I am making (polka dots!) and then it will be done. Maybe ten minutes of work. It is sitting beside the sewing machine. Languishing. I could make an interesting dinner. Or I could just scramble a few eggs. I could go for a walk. There are people in my life to care for. Some of them are also languishing and how can I support them when I am too? A birthday cake must be baked. Doing things for others is usually something that cheers me up. The ingredients are all on my kitchen counter, waiting. My seedlings need replanting. The tomatoes are growing well, if a little spindly. Some of them are just lying down, like I want to. I have to stake them up with bamboo skewers.

Meh.

I need a bamboo skewer for me. What will that be? Sometimes, admitting you have a problem is the first step.

This is a “fake it till you make it” time if there ever was one. Time to fake some enthusiasm. Fake a sense of flourishing. As my character Alden often says to herself in Patterson House, “Buck up.” Wish me luck. I wish you luck too. We can do it.

Rosie the Riveter
Rosie the Riveter saying “We Can Do It”

Maybe I’ll have a nap first.

Begin Again

In my meditation today, I was reminded that when my mind wanders, I can begin again. Focus on the breath. Begin again.

We can always begin again. 

Today is a good day to think about that.

What could we do?

It starts with story. We must know our own story.

We must tell the truth about what happened to us.

We could understand that we are all in this together, that the success of one is the success of all, and not just for humans.

We could devote ourselves to an ethics of care and compassion, to kindness to self and others, knowing that others are connected to us, and we to them, in profound ways. 

We could be humble and acknowledge what we have broken and our own brokenness. We could grieve for what we have lost, because we know that we have lost so much. We are not even sure what it is. But we know. We feel it. It exists as a hollowness in our soul that no amount of food or alcohol or consumer goods or anything else can fill.

We could help each other through the grief.

We could repair what is broken. We could make it our work.

We are ALL in this together: the humans, the trees, the plants, the insects, the air, the animals, the soil, the water, and even the rocks. Even the rocks.

We could build an economy that knows that the earth is not merely a resource for humans to use (up), but a part of us as we are a part of it. The earth’s health is our health. It gives and gives and we, the humans, must stop taking so much.

We could remove the barriers to sharing what we do take.  

We  could build an economy that acknowledges limits. 

It could be beautiful.

Think of what you would begin again, if you could, and know that you can.