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The world was immediately closed off to me again
Our weekly Discontents 7/19
Hey. Hello. It’s Luke from Welcome to Hell World. How are you?
With Covid cases on the rise around the country, particularly as the Delta Variant spreads, and with skeptics continuing to assert their right to die in agony, I thought it might be worth taking a look again at this interview I did with a palliative care nurse from a couple months back.
“We had families flat out not believe us when we told them their loved one was dying of Covid,” they said. “I’ve never dealt with that before, and I have to imagine toxic media coverage was part of that. Like if I’m explaining to a family that a stroke or cancer progression or heart failure is what’s happening it’s still very sad but it makes sense. Telling a family member, over the phone, that they’re going to die from this virus and there’s nothing else we can do, I had a lot of people say I don’t believe you. Or I could literally hear them typing on a computer and they’d say did you give them zinc? It looks like zinc might help.”
Throughout all of this we occasionally, but only occasionally, hear in the news about the immunocompromised. The people for whom the vaccine might not make as much of a difference. Unless it does. For many of us, it seems, those people are easy to forget when doing our life and death risk calculus. Today I asked one such person, a writer named Jesse Raub who was diagnosed with MS not too long ago, to explain what that uncertainty is like. Here’s what he said.
Stick around after that for the usual updates from the Discontents gang.
The place you don’t want to be
by Jesse Raub
In medicine it’s better to either have no idea what’s going on or to know exactly what’s going on. The middle is hell. In October of 2019, when I was in the hospital after waking up spontaneously blind in my right eye, the official diagnosis was “we don’t know what caused your Optic Neuritis, and that’s a good thing, because it means it’s probably a fluke.” In January of 2020, after finally getting a full spinal MRI, the diagnosis was “we know exactly what’s causing your entire lower body to feel numb and lose strength because we found multiple lesions on your spinal column. You have Multiple Sclerosis, and now that we know this we can actually start you on an effective treatment.”
Multiple Sclerosis is an auto-immune disorder. Periodically, your immune system gets its wires crossed and sends antibodies to attack the nerves in your brain, spinal column, or optic nerves. The official term for these episodes is “exacerbations,” but they’re more commonly known as flare-ups, and symptoms can sort of come and go. Some people have flare-ups that can aggressively limit mobility and affect muscular strength and balance. I was really lucky that the flare-up that got me diagnosed was relatively mild: mostly a numb sensation that overtook my legs, torso, and fingers that’s been slowly fading over the last six months. I was less lucky with my right eye, which only sees things in a gray haze up to an arm’s length away.
“Should I consider any lifestyle changes?” I asked my MS specialist.
“If you were a professional rock climber, maybe I’d suggest looking for another line of work,” he responded with a smirk. The short answer was “not really.”
Lifting weights, having a beer or two, going on long hikes — these were things I was preparing to have to give up. It took three weeks between my diagnosis and actually getting in to see the MS specialist, which meant I had three weeks on a couch imagining what the next 50 or so years of my life on a couch would be like. Suddenly I was less concerned about snagging a PS5 and subscribing to more streaming media services. The world was once again open for me to explore. MS couldn’t hold me back.
But now it’s no one else wanting to change their own lifestyles, or to keep up with the changes they did make for the past year, that presents somewhat of a different, more complicated problem for me.
“If you can, you should really get the COVID vaccine immediately,” the doctor said as I stood up to leave the office. “The treatment we’re going to start you on targets your immune system, so you’re going to need to get vaccinated before you start treatment.”
The treatment I’m on is called “ofatumumab,” and it’s one of the many newer MAB (or Monoclonal Antibodies) treatments designed to reduce the chances of having another flare-up. Once a month, an extremely expensive pen arrives cold packed on ice to my doorstep, and I jab it into my thigh to eradicate a good portion of my B cells, which basically are what kick off the antibody response. The idea is that my immune system is occasionally dead set on eradicating my brain stem, and this treatment keeps them in check by culling the herd before they can revolt.
Imagine, if you will, that your brain is a ruthless dictator and your B cells are disgruntled henchmen: let their ranks grow too large and they might start thinking about how maybe their problems aren’t just some outside invading force. Periodically, if you execute about half the henchmen in front of the others, it may serve as a good deterrent to keep the remaining ones from considering revolution.
This means that by taking my Disease-Modifiyng Therapy (the less hallucinogenic DMT), I’m much more likely to develop a severe case of COVID-19. Because of that, it’s highly recommended that people who take ofatumumab or similar DMTs should get vaccinated. After that, well, we don’t know much. There are guidelines for timing your vaccine around your DMT doses to make sure it has a chance at being the most effective, but we have no idea how effective the vaccine actually is at preventing infection for people on MAB DMTs or how strong of an immune response I actually have.
When the brain MRI came back clear on my first hospital stay, we had no idea why my Optic Neuritis was triggered, and I got to live in the pleasant world of “it was a fluke, who cares.”
When the spinal MRI came back with active lesions, we knew exactly why I was having symptoms, and I got to live in the slightly reassuring world of “well, we can treat it, and in all likelihood, you’re probably not going to have a huge change to your lifestyle.”
When the news about being immunocompromised hit, the world was immediately closed off to me again. MS can’t hold me back, but the world’s lackluster response to COVID-19 certainly can.
The particular situation I find myself in now is one of partial knowledge, which, as I mentioned, is the place you don’t want to be. It’s clear that the COVID-19 mRNA vaccine has boosted my immune response to this novel coronavirus. It’s also clear that MAB DMTs can have a heavy effect on the immune system’s ability to generate that boosted immune response. This article by a doctor who takes rituximab, a different MAB DMT, is scary to read for anyone in our position:
“I knew vaccination might not work for me. Because rituximab destroys the ability to produce antibodies, it blunts responses to other vaccines too. I’m fortunate to have colleagues who study T cells, and they measured my T cell responses after vaccination against SARS-CoV-2. They drew my spike protein antibodies too. And my immunologic response was…totally lackluster. Both the level of antibodies I generated and my T-cell responses were far too weak to offer any assurance of protection.”
In that piece, she describes how the loosened COVID-19 restrictions are basically going to induce a forever-pandemic for the immunocompromised. Without herd immunity, and with enough anti-vaxxers now running around unmasked indoors, it’s March 2020 all over again. Her long term outlook is also not great:
“If the virus becomes endemic, as it likely will, I can’t live the way I do now forever, with my ambitions collapsing in upon me at the age of 37. I want to work in South Africa again, hear live music, and laugh with friends at the Burmese restaurant we all love. The way I’ve practiced harm reduction with patients, I’ll have to practice it with myself. It’s tough when scientific knowledge is so nascent and I take a drug that elevates the risk of severe COVID-19. It’s hard to conceive of the fact that if COVID-19 never abates, the guy next to me in the movie theater could transmit a virus that might kill me in a few weeks. I don’t know how I’ll handle this. I know so little about my future these days—and like many physicians, who tend to sketch out their plans a couple years in advance, it makes me uneasy. For the moment, it’s a discomfort I have no choice but to accept.”
My situation becomes more complicated only because I have one more piece of incomplete information: ofatumumab, a once a month self-administered injection, is less potent than rituximab, a once every six months or so IV infusion. Where the IV infusions basically wipe out all of your B cells, the once-a-month injections just selectively pick off a handful of them.
There’s reassurance that, if I’m at the grocery store, fully masked, some dingbat who coughs near me is less likely to make me sick. But, to put it in sports terms, my level of compromised immune system is closer to the basketball player with a history of knee injuries: technically, I might get clearance from the medical trainers to get back out on the court, but my risk of injuring myself again over time is infinitely greater than the average player.
My girlfriend and I just bought a house and moved to Madison, and there’s solace in the fact that it’s a lovely summer and this city provides many opportunities to go outside. But as much freedom as that gives us to leave the house now, I’m still racked with uncertainty at almost every given moment. When a general contractor came by to give us an estimate on some work that needs to be done, my girlfriend and I both masked up. He didn’t have one. I keep a short stack of black surgical masks by the door, and yet the general societal pressure to be polite meant that, in the moment, I welcomed him unmasked to come look at our kitchen.
It’s an innocuous mistake, the kind that is bound to happen as mask restrictions are lifted across the U.S., but for the next 10 days I get to have this nagging little thought: is that what’s going to get me sick? Or can I count on the fact that I’m only somewhat immunocompromised to protect me in those moments?
The real answer is, well, I don’t know, which puts me back in the dreaded middle ground of medical certainty.
There’s no one definition for “immunocompromised.” There are many people who were born with a disability, or people who are going through cancer treatments, or people who just have weak immune systems. The one thing that ties us all together is the fact that we’re at an extremely high risk for serious illness, and that our well being is almost never talked about when cities, states, and the federal government are considering social guidelines for managing the pandemic.
So I won’t, and the rest of the immunocompromised won’t, be able to sit indoors maskless at a restaurant for, well, years potentially. That’s okay. I don’t have to go out to dinner. But I do have to go to the store. I do have to visit new places for work. I do have to just plain exist in a society that seems to ignore my needs. Which, I guess, is just my way of saying: Put on a damn mask when you go grocery shopping. I don’t want to find out for sure what will happen to me if enough people don’t.
Jesse Raub does coffee for work for and writes for a hobby, though it used to be the other way around. You can read his music newsletter Good Ones here and his beverage newsletter Big Drinks here or find him on Twitter at @jesseraub
Last week I talked to Allie Marotta. She’s part of the leadership team for Mutual Aid Diabetes, an online effort to get diabetics the resources they need to stay alive that the state doesn’t supply them—things like insulin and syringes, basic stuff that should be free but isn’t. One particularly interesting thing Allie said is that MAD gets as many requests for help navigating insurance as they do for medical supplies. If you read Sick Note you’ll know one of my biggest objections to the lack of a healthcare system in the United States is how brain-meltingly complicated it is. These administrative barriers shorten lives, and they are also simply so much more work than giving everyone healthcare as a right. Why are we doing more work to save fewer people? (Money, is why.) Allie’s story is a good example of how that dynamic effects chronically ill people like diabetics, and what sorts of measures they have to take in the absence of any help from the government.
Worker resistance was a big theme over the last week at The Flashpoint. I talked to staffers at a Lincoln, Nebraska Burger King about their public mass resignation and subsequent viral quip on the store’s sign: “We all quit. Sorry for the inconvenience.”
Former staffer Kylee Johnson told me that the support from the community and from around the country was inspiring.
“I do believe that power can exist in numbers, especially now with social media the way it is,” Johnson said, adding, “It’s just incredible what standing up for your rights can do.”
Also at The Flashpoint:
Thanks for reading—more to come this week.
Wars of Future Past
Kelsey D. Atherton
In February 2008, a Civil War cannonball exploded, killing a man in Virginia. It’s a death I think about a lot, the kind of item that filled a couple inches of alt-weeklies “news of the weird” columns, usually with a punchline about how the guy’s hobby was salvaging and restoring cannonballs. What did he expect, exactly, when he finally came across a live one?
Yet there’s something else far more ominous at work here than the grim joke of a cannonball built in one century, persisting through a second, and killing someone in a third. In this week’s upcoming Wars of Future Past I do a dive into weapon longevity, inspired in equal parts by that cannonball, and also by the prospect of the B-52 bomber serving for a full 100 years. Categories of weapons can endure for centuries. It’s rare that specific manufactures of weapons do, though not entirely unheard of. And it means, among everything else, that commissioning a weapon for an immediate war might mean authoring the death of someone else hundreds of years removed.
Perspectives: Past, Present, and Future
Most of my energy right now is focused on the release of my book, The Verge: Reformation, Renaissance, and Forty Years that Shook the World, which comes out tomorrow. My last post on Perspectives offers a summation and a preview of the first few pages, which I hope you’ll check out, and maybe the book too. I think it’s pretty good.
Hi everyone, Crosbie from Discourse Blog here. We had a banger of a blog week last week, so let me get straight to the highlights. The continuing disaster of the Tokyo Olympics this year isn’t really getting the press it deserves, but our own Caitlin Schneider got straight to the point: we’ve got to call the whole thing off — for good, not just this year.
One of the standout blogs last week was Sam Grasso’s reporting on the anti-union campaign inside MSNBC. Sam got audio of an all hands meeting that featured some of the slickest deliveries of anti-union talking points I’ve ever heard — a real masterclass in undermining an already-majority effort to organize.
Meanwhile, Paul and I both covered the major world stories of the week: me on the prospective U.S. intervention in Haiti, and Paul on the U.S. right and center’s hypocritical response to the Cuban protests.
We also covered Bolsonaro getting so constipated he got the hiccups for 10 days, Elon Musk continuing to be a gigantic moron, and Minnesota’s freakishly large invasive goldfish. Katherine also talked to friend of the blog Felix Bidermann about Dark Souls, Bolsonaro, and more. While on a slow day, I also wrote a rant about Emmy nominations that I’m still proud of because it will probably anger Star Wars fans, which is my true calling in life. Sorry to Kelsey. That’s it for us! See you next week.
Welcome to Hell World
Check out this post from yesterday catching free subscribers up on what I sent out to the paid list this week.
In this one Mary Stathos, a tenants organizer, wrote about the need for rent control and how untenable the situation has become for the average renter in the Boston area (and probably your city too).
Landlords already go to incredible lengths to limit access to housing and resources for the most vulnerable. They perform background checks, credit checks, and income verification, require illegal application fees, and four months of rent upfront for moving costs. They raise rents every year, forcing families and individuals to take regular displacement as a given, never allowing us to save money or know stability. They ignore the need for routine maintenance; even a new countertop or lighting fixture is a luxury for the average renter. Shelter is one of the most basic necessities for a human being to stay alive. But they don’t care who lives or not as long as the money keeps coming in.
Before that I sent out this piece about the addiction and homelessness epidemic centered around an infamous open air drug market in Boston. In it I interviewed a recovering heroin addict and self described former violent convict about a group he started called the Mass Ave. Project that serves as something of a beacon of light and a bulwark of support for family members of addicts, people in recovery, and those still on the street looking for any sort of help they can get.
“Everybody knows somebody. Everybody has people out there. People have lost people. I think the fact is that people are also really disenchanted that there is no response from our public officials, man. You know what I mean? It’s the fucking saddest state of affairs. There’s no chairs down there. No trash barrels. No comfort. People are just fucking standing on the fucking hard concrete all day long just shooting meth, shooting heroin and overdosing. Nobody is doing shit to help them. It’s fucking sad, man. Me and my friend Jimmy couldn’t turn a blind eye.”
Gaby Del Valle & Felipe De La Hoz
After years of failed attempts by Congress, both very expansive and very narrow, to enact some sort of program for the regularization of the millions of people in the country without legal status, it appears that we’re finally on the cusp of the first mass legalization scheme since 1986 thanks to budget reconciliation, of all things. Last week, West Virginia Sen. Joe Manchin, who for practical purposes is the agenda-setter in the Senate given his crucial swing vote, indicated that he was on board with immigration measures that Democrats were hoping to add to the $3.5 trillion spending measure, enormously improving the odds that the language will make it into the final version. In last week’s BORDER/LINES, we discussed what to expect from the measures.
While specific details are still in flux, it appears that the immigration provisions will include paths to permanent residency and subsequently citizenship for three broad categories of people: Dreamers, i.e. people who were brought to the country illegally or lost status as minors; people with Temporary Protected Status (and perhaps in the Deferred Enforced Departure program); and people who are farmworkers or were essential workers during COVID-19. The big remaining questions involve eligibility and cutoff dates. For example, the American Dream and Promise Act, which passed recently in the House (but not the Senate), would include all Dreamers who entered the U.S. as minors and had continuously lived here since January 1 of this year, a far more inclusive standard than the DACA program, which requires continuous presence since June 15, 2021.
There’s also the salient question of how it will treat criminal contact; every immigration legislative proposal in recent history has laid out some exclusions based on contact with the criminal justice system, a fact that has recently caused friction between moderates and progressives, who argue this is just importing the problems of a racist and arbitrary criminal justice system into the immigration sphere. All in all, minor tweaks in the language could lead to big changes in the pool of potentially eligible immigrants, and the measures could still be stripped out as negotiations over reconciliation continue. We’ll have to wait and see.