The Heart Wants What It Wants

The heart wants what it wants.

And mine wants a new mitral valve.

But wait, you say. “Didn’t you just get a new valve?”

Yes, I did. Thanks for remembering. An aortic valve. Not quite seven months ago. And then two months after that, I had a lobe of my lung removed. It was (she says in her understated way) difficult.

The many doctors thought I could wait a few years to replace the mitral valve. But, the heart wants what it wants.

There’s a Hail Mary play going on—something about a balloon. But I’m pretty certain the upshot will be another open heart surgery. Time frame unknown.

I accept all well wishes, good vibes, prayers, whatever you’ve got on offer. And I send it right back to you.

Involuntary Treatment and Involuntary Isolation

So the BC NDP have a new policy of involuntary treatment (at a prison, no less) for people who use drugs, people with mental health issues and people with traumatic brain injury. Involuntary treatment is a terrible idea. What happened to human rights?

It’s so much easier to lock people up, hide them away, and pretend to help them instead of actually helping them. I’m done with this government.

Thank goodness in my riding I can vote for Sonia Furstenau, leader of the BC Green Party. I have an alternative that I can stomach. She issued a statement about involuntary treatment and it is wonderful and right.

Here is a short history of why I’m so done with the BC NDP.

It started shortly after I moved to BC and began engaging with the Health Ministry on the airborne nature of SARS-CoV-2 and the urgent need to inform the public and put proper mitigations in place. After a back and forth and another back, they wrote and said that they would no longer engage with me on this issue. Or on any issue, so it seems. Apparently, they can do that.

I’m going to make a long and disappointing story short and move straight to this past week.

David Eby floated the idea that the carbon tax was something BC wanted to drop. That was the day after Jagmeet Singh of the federal NDP mused about siding with the Conservatives and forcing a carbon tax election. It’s too much. What do they stand for anymore? Nothing.

Side issue: Why do the NDP always swing right? Has this strategy ever worked? I seem to remember it getting Harper elected. Young people and truly progressive people are starving for someone to vote for, someone who cares about the future, and this old person wants the same.

I expect governments to follow science, to do the hard work of debunking misinformation and explaining policy like the carbon tax to voters. Instead, both the provincial and federal NDP are completely giving up and becoming part of the big lie. The carbon tax puts money back in the pockets of most Canadians. For heaven’s sake. It’s their job to explain that.

And without an alternative policy, what is their plan? It appears to be to let the planet fry. We already lost 600+ souls in BC during the last heat dome. The province is on fire every spring and summer. What’s the plan? And don’t get me started on LNG, fracking, pipelines, logging old growth, and all the other environmental disasters still going on all around us.

That brings us to this involuntary treatment nonsense. As a person who is “out there” and very much “on the record” with a traumatic brain injury, I’ll just speak to my own issues, as long as you understand that I realize “involuntary treatment” should never happen to ANYONE.

It should come as no surprise that many people with TBI end up unhoused. It’s a societal and governmental failure on so many levels. I am not unhoused, but only because I have some privilege. And to put someone with a TBI into involuntary treatment is particularly ridiculous because there is not much agreement on what treatment should even be.

What this boils down to is a plan to keep us “difficult people,” (TM) particularly if we are unhoused, out of sight and out of mind. You’d think we were hosting the Olympics or something. (We desperately need a sarcasm font in the world.)

But I’m going to go further. The kind of mind that dreams up involuntary treatment is the same kind of mind that abandons critically ill and disabled people during a pandemic and leaves them isolated in their homes.

The pandemic? Yes, the pandemic. The one that’s ongoing. That thing making everyone sick.

Again, I expect governments to do the hard work, to state the hard truths, to explain SARS-CoV-2 is still making people sick, to tell people when they were wrong when they said it isn’t airborne, to correct mistakes. Yet, there are no mitigations. There is no clean indoor air strategy. There are no tests anymore. Wastewater testing is being scaled back and, in some places, totally abandoned. Funny how if you don’t measure SARS-CoV-2 and don’t test for it, it’s easier to pretend it isn’t there. There is no masking requirement in hospitals. Some places are even banning masks. As long as everyone else gets to cosplay normal, disabled folks like me are forced out of public spaces that are not safe for us. Including hospitals. We are stuck at home. That is involuntary isolation.

Involuntary isolation exists on a continuum with involuntary treatment. They are both ways to make sure disabled and ill people, unhoused people, people who use drugs, and all the “difficult people” (TM) are not seen or heard. The government is now willing to “involuntarily treat” (read “imprison”) drug users, people with mental health problems, the unhoused, and, apparently, those with TBI. Bad enough. But when it comes to covid, we have already been effectively involuntarily isolated.

It’s hard for me not to conclude that they would prefer it if the “difficult people” (TM) and those with comorbidities would just die already. We’re going to die anyway, they keep saying. Not such a tragedy, is the implication. Get on with it is the implicit message. I’d like to remind everyone that we’re all going to die and not a single one of us wants to be rushed to the finish line.

Both involuntary treatment and involuntary isolation are part of the same impulse. That impulse eugenic. It’s fascist. And I won’t vote for it.

Involuntary Treatment and Involuntary Isolation

So the BC NDP have a new policy of involuntary treatment (at a prison, no less) for people who use drugs, people with mental health issues and people with traumatic brain injury. Involuntary treatment is a terrible idea. What happened to human rights?

It’s so much easier to lock people up, hide them away, and pretend to help them instead of actually helping them. I’m done with this government.

Thank goodness in my riding I can vote for Sonia Furstenau, leader of the BC Green Party. I have an alternative that I can stomach. She issued a statement about involuntary treatment and it is wonderful and right.

Here is a short history of why I’m so done with the BC NDP.

It started shortly after I moved to BC and began engaging with the Health Ministry on the airborne nature of SARS-CoV-2 and the urgent need to inform the public and put proper mitigations in place. After a back and forth and another back, they wrote and said that they would no longer engage with me on this issue. Or on any issue, so it seems. Apparently, they can do that.

I’m going to make a long and disappointing story short and move straight to this past week.

David Eby floated the idea that the carbon tax was something BC wanted to drop. That was the day after Jagmeet Singh of the federal NDP mused about siding with the Conservatives and forcing a carbon tax election. It’s too much. What do they stand for anymore? Nothing.

Side issue: Why do the NDP always swing right? Has this strategy ever worked? I seem to remember it getting Harper elected. Young people and truly progressive people are starving for someone to vote for, someone who cares about the future, and this old person wants the same.

I expect governments to follow science, to do the hard work of debunking misinformation and explaining policy like the carbon tax to voters. Instead, both the provincial and federal NDP are completely giving up and becoming part of the big lie. The carbon tax puts money back in the pockets of most Canadians. For heaven’s sake. It’s their job to explain that.

And without an alternative policy, what is their plan? It appears to be to let the planet fry. We already lost 600+ souls in BC during the last heat dome. The province is on fire every spring and summer. What’s the plan? And don’t get me started on LNG, fracking, pipelines, logging old growth, and all the other environmental disasters still going on all around us.

That brings us to this involuntary treatment nonsense. As a person who is “out there” and very much “on the record” with a traumatic brain injury, I’ll just speak to my own issues, as long as you understand that I realize “involuntary treatment” should never happen to ANYONE.

It should come as no surprise that many people with TBI end up unhoused. It’s a societal and governmental failure on so many levels. I am not unhoused, but only because I have some privilege. And to put someone with a TBI into involuntary treatment is particularly ridiculous because there is not much agreement on what treatment should even be.

What this boils down to is a plan to keep us “difficult people,” (TM) particularly if we are unhoused, out of sight and out of mind. You’d think we were hosting the Olympics or something. (We desperately need a sarcasm font in the world.)

But I’m going to go further. The kind of mind that dreams up involuntary treatment is the same kind of mind that abandons critically ill and disabled people during a pandemic and leaves them isolated in their homes.

The pandemic? Yes, the pandemic. The one that’s ongoing. That thing making everyone sick.

Again, I expect governments to do the hard work, to state the hard truths, to explain SARS-CoV-2 is still making people sick, to tell people when they were wrong when they said it isn’t airborne, to correct mistakes. Yet, there are no mitigations. There is no clean indoor air strategy. There are no tests anymore. Wastewater testing is being scaled back and, in some places, totally abandoned. Funny how if you don’t measure SARS-CoV-2 and don’t test for it, it’s easier to pretend it isn’t there. There is no masking requirement in hospitals. Some places are even banning masks. As long as everyone else gets to cosplay normal, disabled folks like me are forced out of public spaces that are not safe for us. Including hospitals. We are stuck at home. That is involuntary isolation.

Involuntary isolation exists on a continuum with involuntary treatment. They are both ways to make sure disabled and ill people, unhoused people, people who use drugs, and all the “difficult people” (TM) are not seen or heard. The government is now willing to “involuntarily treat” (read “imprison”) drug users, people with mental health problems, the unhoused, and, apparently, those with TBI. Bad enough. But when it comes to covid, we have already been effectively involuntarily isolated.

It’s hard for me not to conclude that they would prefer it if the “difficult people” (TM) and those with comorbidities would just die already. We’re going to die anyway, they keep saying. Not such a tragedy, is the implication. Get on with it is the implicit message. I’d like to remind everyone that we’re all going to die and not a single one of us wants to be rushed to the finish line.

Both involuntary treatment and involuntary isolation are part of the same impulse. That impulse eugenic. It’s fascist. And I won’t vote for it.

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.