Curious About Everything Newsletter #7

Important reads about the end of the pandemic, residential schools, depression, beauty in spring, and more.

Curious About Everything, a newsletter by Jodi Ettenberg

Hello everyone. Somehow it is June. And the last month was a busy one for me.

First of all, since intra-provincial travel is now allowed, I moved to Gatineau for the summer. It’s a few hours away from Montreal, and I’ve never spent time here before. As many of you know, I’m really close to my brother and he lives just across the river in Ottawa. This move was possible because I’ve made some progress since my leak reopened in 2018. When I re-leaked I was in bed 22 hours a day, unable to make any food or stand up for more than a few minutes at a time. Now, I can occasionally cook for myself with chopping/dicing help, take short walks, and stand for a time at my laptop on the good days.

What I can’t do is live alone just yet. I’m not alone in Gatineau, but the hope is to eventually get to a point where I can set up an apartment near my brother to be able to live somewhat independently. The border to Ontario is closed for the moment, so I am taking my short walks in the area near my new place until he and I can reunite.

Moving to a furnished unit also gave me a good feel for what kinds of things I would need to change to accommodate my disabilities in a new living space, like drawers I can reach or a door that isn’t too heavy to open, and more. This was some tough calculus, but important to know.

I’ve never spent time in Gatineau before. It’s beautiful.

And! As part of my aim to raise awareness for CSF leaks, I was interviewed by the Spinal CSF Leak Foundation.

You can read the short interview here.

Now, to those links.

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Important Things I Read This Month:

1/ When the Pandemic Ends I Worry I’ll Be Left Behind | The Atlantic, April 9, 2021. By Lisa Grunwald.

I am starting CAE7 out with a piece from April that I did not get to share. It feels fitting to include now as we watch the United States start to open up. The ebullience in the US as vaccination rates allow for cases to drop is a big contrast to worsening progroses in South America and parts of Asia. But also, for those of us who were in isolation prior to COVID-19 and will remain in various levels of isolation thereafter, it comes with some fear of becoming fully invisible.

I thought this piece captured the anxiety I’ve heard from many in the disabled community. Of course, we all want the pandemic to recede and people to return to activities they love. But for those who won’t be able to do that, the pandemic made life easier in some key ways. Access to telehealth, Zoom meetings that included us, curbside pick up available in many places, and more. That these things were possible prior but not in place because able-bodied people didn’t need them isn’t lost on many in the disabled community. But we do fear that as things revert to a new normal, the new normal won’t have room for keeping this level of accommodations.

Lisa writes:

But when the pandemic is over, the chronically ill, like every group on the margins, will undoubtedly be left behind. That awful feeling—Wait for me! I can’t keep up!—will return. And the empathy of friends, which was such an extraordinary gift of the lockdown, will most likely turn back into sympathy (or neglect). 

It’s a short, but powerful read.

2/ Sleep Evolved Before Brains. Hydras Are Living Proof | Quanta Magazine, May 18, 2021. By Veronique Greenwood.

What if I told you that even animals without brains sleep? You don’t have to be a biology major to find this article fascinating. The hydra is a freshwater “simple” creature without a brain or even much of a nervous system, but it nonetheless (apparently!) goes through periodic rest states that resemble sleep.

This is important because scientists have long theorized that we sleep so that the brain can cycle through rejeuvenating activity, with CSF flowing through to clear out debris in in the brain and consolidate memory as we rest. These recent findings shine a light on that theory, and call the rationale for sleep into question; if even brainless creatures sleep, what is sleep for?

Researchers have noticed that molecules produced by muscles and some other tissues outside the nervous system can regulate sleep. Sleep affects metabolism pervasively in the body, suggesting that its influence is not exclusively neurological. And a body of work that’s been growing quietly but consistently for decades has shown that simple organisms with less and less brain spend significant time doing something that looks a lot like sleep. Sometimes their behavior has been pigeonholed as only “sleeplike,” but as more details are uncovered, it has become less and less clear why that distinction is necessary.

It appears that simple creatures — including, now, the brainless hydra — can sleep. And the intriguing implication of that finding is that sleep’s original role, buried billions of years back in life’s history, may have been very different from the standard human conception of it. If sleep does not require a brain, then it may be a profoundly broader phenomenon than we supposed.

Curious to see where this research leads!

3/ No longer ‘the disappeared’: Mourning the 215 children found in a mass grave at Kamloops Indian Residential School | The Conversation, June 1, 2021. By Veldon Coburn.

With the discovery of 215 children buried at the Kamloops Indian Residential School, Canada’s sickening treatment of its Indigenous population has made headlines around the world. I chose to share this article because it not only goes into the atrocities, but also how these children were eradicated—even in death.

Just as in life, how Indigenous death is mourned and remembered has been a matter of political control. The Canadian state, in partnership with the churches, has long unilaterally assumed sovereignty over Indigenous mortality and bereavement.

Nowhere is this more apparent than the atrocity at Tk’emlúps which has sharpened this for many Indigenous nations, as we see how the Catholic church not only denied these children the capacity to shape the means of and choose the ends of their life, but also they denied their communities control over their death.

In Tk’emlúps, the Catholic church decided that neither their lives nor their deaths were worthy of being known, remembered and commemorated.

One of the more appalling acts by the Catholic church in Tk’emlúps was how the children were deliberately forgotten; they were omitted from the official records that would verify their passing.

Despite the findings from Canada’s Truth and Reconciliation Commission and the Missing and Murdered Indigenous Women and Girls inquiry, there has been continued racism and discrimination against Indigenous people in Canada, as well as a shirking of responsibility from the Catholic Church. I am sharing a painting by Inuk artist and musician Tanya Tagaq, and reproducing her caption in full, as her words are far more valuable than mine on this topic:

I did this painting years ago. She is sick. Throwing up the graves. Throwing up the sickness. They found an unmarked grave with 215 children in it at a residential school in Kamloops. There are more unmarked graves around more residential schools in Canada.

It is time for all these children to be allowed to Rest In Peace. Those children would have all grown up to become Elders. The graves are unmarked because they are trying to hide what they did. The numbers the general public knows are wrong because the perpetrators were the ones documenting it. The lies are told to say it was only illness. The lies are told to say these schools were no worse than any other boarding schools. Those are lies. The reality is monsters did the most unspeakable things to children. I can’t even type out details. It hurts. Canada needs to know. Canada demands to know. The people that did this...some of them are still alive. Their descendants need to know what they did. Name the names. My heart is broken. My heart is broken because I am a mother. All the love to everyone who is hurting learning about those children found. Thank you to the Tk’emlup people for holding ceremony for the children. I believe justice should be served. I believe that the grounds of other residential schools should be searched. I believe that it is time for “benevolent” Canadians to look at the blood in their hands. It’s time.

I never learned about residential schools in my Canadian history class in high school, which is unacceptable. As George Takei said this week, “Whether it’s the unearthed remains of Indigenous children at a boarding school, or finally a visit to Tulsa by a president 100 years later, one thing is clear: we cannot move forward until we acknowledge the atrocities of the past. We must teach true history, however painful.” So: for further reading:

  • A primer about residential schooling (and FAQs) from 2015, here.

  • The Truth and Reconciliation Commission educates Canadians on the injustices inflicted on First Nations, Inuit and the Métis Nation by the forced removal of children to attend residential schools and the widespread abuse suffered in those schools. It has copies of all its reports online.

  • On the politics The Department of First Nations and Indigenous Studies at the University of British Columbia has a thorough summary of residential schools here.

  • “Why are the deaths of Indigenous women and girls ungrievable?”

  • Survivors call on the Catholic Church to take responsibility for residential schools.

4/  Magical Spring in The Netherlands | April 8, 2021. By Albert Dros.

I read the tough stories like the horrors I’ve set out above because they are important to witness. Survivors deserve it, at a bare minimum. It is also important to remember the beauty that does exist in this world. So I am sharing this stunning photo essay from Dutch landscape photographer Albert Dros as a balm for the atrocities that humans inflict on each other.

Spring is a magical season, especially here in the Netherlands,” he writes. His photos make that very clear.

5 / A Few Thoughts on Depression | Noahpinion, May 27, 2021. By Noah Smith.

The pandemic has brought forth a more robust discussion of mental health, but some of the technical pieces with recommendations from experts don’t feel particularly relatable. Enter Noah Smith, who collated his notes about depression into one place, and goes into what it actually feels like—as well as what people can do to help.

During the most intense part of a major-depressive episode, what I've felt is nothing at all like sadness. Mostly, it's a kind of numbness, and utter lack of desire and will. Underneath that numbness, there's the sense that something awful is happening - there's a very small voice screaming in the back of your mind, but you hear it only faintly. There's an uncomfortable wrongness to everything, like the world is twisted and broken in some terrible but unidentifiable way. 

And

Family and lovers are important, but really, the friendship component of these relationships has to dominate, so the depressed person doesn't constantly think negative thoughts about how they've let you down. Essentially, to help a depressed person, friends need to become a bit more like family, and family a bit more like friends. Also, you should realize that just because your depressed friend or family member is unresponsive, that doesn't mean that you aren't doing him or her a lot of good.

6/ Blast, impact, trauma, and everything that comes after | Task and Purpose Magazine, May 7, 2021. By Russell Worth Parker and Rachel Lance.

I am including this piece on traumatic brain injuries because 1) concussions aren’t rare, especially for many athletes, 2) while long-term impact of leaking on the brain has not been fully studied, quite a few fellow CSF leakers have been diagnosed with acquired brain injury, and 3) net, it’s a hopeful piece about harnessing the power of neuroplasticity.

TBI is a condition as misunderstood by its victims as anyone. When related to the brain, the word trauma may give rise to concerns of mental illness. Especially in military culture, which values stoicism and stability, such concerns make service members loathe to report anything that may affect their duty status. Thus, those suffering symptoms that accompany TBI are often reluctant to acknowledge the common symptomology caused by the very service they seek to continue […] due to fears of being labeled as “crazy.”

and, on the treatment the co-author undertook (at a place called Intrepid Spirit):

After a week, my neurologist asked if I’d try a non-narcotic prescription medicine for pain. A week later, with my pain reduced, I began sleeping six to seven solid hours of restful sleep for the first time in 15 years. […] I noticed that on my hour long commute, I no longer had road rage. I tried to. I screamed curse words at someone who pulled out in front of me, forcing me to skid to a stop. Then I realized there was no heat behind my words and I resolved to just not do it anymore. Realizing how much anger and pain I no longer had illuminated how much I had been carrying. 

7/ Heads up! The cardiovascular secrets of giraffes | Knowable Magazine, May 19, 2021. By Bob Holmes.

Ending on a lighter note. Giraffes!

The giraffe is a fascinating creature, but one medical reason is that with its incredibly high blood pressure—it ought to have serious swelling in knees and legs. But it doesn’t, and scientists are figuring out why. Spoiler: it’s basically because its legs have built in compression stockings.

What giraffes can teach us about the cardiovascular system, and why they don’t faint when they lift their heads up after drinking water, at the link.

Grab Bag!

Sundry things that caught my attention.

  • A gaggle of “literary collective nouns” from Tom Gauld. Love the last one:

  • Interactive (and beautiful in a “depressing beauty” kind of way) map of light pollution around the world.

  • On pain, the personal computer, and the body. “Our pain feeds whole new industries, blossoming in the form of standing desks, walking desks, adjustable keyboards and ergonomic mice of every stripe; our aggrieved bodies have been a boon for voice recognition software (this entire essay was written with voice recognition software).”

  • Only 24 people have journeyed far enough to see the whole Earth silhouetted against the backdrop of outer space. Toby Ord took a selection of the images from space missions and digitally restored them to their full glory. Incredibly humbling. (I added these images to my older piece on the Overview Effect).

  • Where does a candle go when it burns?

  • This is from 2020, but I keep forgetting to share it: “Party in a Spreadsheet” was an experiment from Marie Foulston during the onset of the pandemic, allowing people to interact socially inside a shared Google doc. Yep, you read that right. “Where is the space for the mundane, the idle, and the liminal… those subtle and nuanced moments that also come with being together?” Marie asked in her round up. “How does it feel to be with someone and to know their presence not through their face, or voice, or a humanoid avatar, but just silently knowing which cell of a spreadsheet they just clicked on?” Now you can know.

  • Scientists have taught bees to smell COVID-19 infections. (I know.)

  • If you’re looking for a newsletter that provides an international lens on the news each week, I subscribed to What Happened Last Week and I really appreciate their eye.

Until next month,
-Jodi