Curious About Everything Newsletter #9

A painful CSF Leak setback, plus reads about overthinking, awful people, a duet with the Golden Gate Bridge, & more.

This is going to be a slightly shorter CAE, because I recently had a very bad CSF leak setback. In the last months, I’ve been upright more and more, walking down to the water (3.0km at a time!) in Gatineau, and able to sit for some time without my trusty butt pillow.

Many of the worst CSF leak symptoms went away, including the bulk of the the positional “brain is sucking down into my brainstem” feeling that is most characteristic of a leak, which used to happen as soon as I stood up.

People asked me if I was getting better, and I usually said I didn’t know that I was. Interviews with the leak experts suggested that my body may instead be overcompensating with CSF production, and thus I felt better than I used to. With a CSF leak, many of the positional symptoms are a consequences of the “low” CSF pressure. Without the low pressure traction on my nerves and brain, maybe I felt better but wasn’t actually improving, because my body was pumping out more CSF to compensate for the leak?

Well, I think I may have been wrong because I just had a massive setback and this is the list of what came back:

  • the bad “brain sag” feeling

  • ears blocked when I stand up

  • ears clicking occasionally (regardless of position), and also when I speak. Sounds like the click click click of a gas stove when you’re lighting it

  • tailbone burning / nerve pain

  • burning pain at leak site on the left side

  • toes red and burning

  • tinnitus going crazy (mine sounds like EEEEEE, high pitched)

  • filmy, blurry vision

  • left hand is cold and has pins and needles

  • pain between my shoulder blades

  • word finding problems

  • very dizzy and nauseous

  • loss of appetite

FUN TIMES OVER HERE, LET ME TELL YOU.

What astounds me is just how much of these I forgot went away. I keep meticulous track of symptoms in a journal, but try not to focus on them too much as I like to remain focused on what has improved, vs. what ‘bad’ is gone. I jot my daily notes, but don’t take as much stock as I used to.

It took me many months to get to the level of improvement I got to recently. And regardless of how sealed-ish I was, there is no question the scar tissue was flimsy enough that it re-opened easily. That’s common where collagen degradation is involved, which goes hand in hand with mast cell dysfunction, and other issues I have going on.

But I have to ask myself, can I get back there? I guess we shall see. I have long put off another round of treatment because of potential risk factors that aren’t found in the normal population. At some point I may be ready to try it again, but for now I will see if I can return to the more ‘upright’ baseline I was at earlier this summer.

The mental aspect of this roller coaster remains the hardest of all. I turn 42 in a few days, and this was not the birthday I thought I’d be celebrating this year.

“How can I help?”

I get this question a lot, which makes me a very fortunate person online. People want to send supplies or coffee or food to make a meal.

Because of the leak, I’ve had to turn down freelance work and recently also stopped working with a company I love because I cannot commit to it with the levels of pain I am in. The best help is therefore supporting me when I’m (hopefully temporarily) unable to support myself as I used to.

There are two ways that would help the most:

1/ Joining my Patreon community, where you will get your fill of birds, occasional video updates, additional links, and the ability to help me provide me with income stability:

Support me on Patreon

2/ An Amazon gift card, sent to jodi-at-legalnomads dot com, where you’d be helping with supplies to make my living space more accessible, supplements, specialty flours and products, and more:

Send an Amazon card

As you can imagine, the deflation of realizing your healing has gone away hits like a rock. Healing isn’t linear, as all the memes tell us. But when you’re in it, the ups and the downs and the what ifs in between, it’s a long slog.

Here’s to hoping things improve soon because this is truly the pits.


Before we get started on the links: a question a reader asked a very thoughtful question that I answered at length, which may be of interest.

The question was, “if you died tomorrow, would you be satisfied with your life?” I interpreted this to mean “would I be satisfied with the choices I made” and not whether or not I was “done” with living. The base assumption for this exercise is that you don’t want to die, but the question allows you a full circle reflection.

My thoughts, including near death experiences and what they do to mindset, in the caption below. As with other Instagram posts I share here, if you don’t have an account, just reply to this message and I’ll copypasta the text in there.

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5 Interesting Things I Read This Month:

1/ Why I'm Glad I'm an Overthinker | The Guardian, July 4, 2021. By Annalisa Barbieri.

Oooh, did this one resonate. I’ve always been an overthinker, and via meditation and EMDR I have been able to lovingly soften those sharp edges into curves most of the time. My brain still trends toward an immediate crunching of numbers, meaning that I instinctively run through the gamut of consequences when faced with any given situation.

This calculus goes into decision-making almost without my realizing it. But it’s also, I think, part of what helped keep me safe during a decade of mostly solo travel.

I became a natural observer, able to take the temperature of a room, able to watch people’s micro-movements, listen to their language, their tone. This all became second nature to me. Sometimes, today, my children and husband think I’m a mind reader, but of course I’m not. I’ve just observed what’s been said, what’s gone on, and I’ve overthunk what they might do, or say. So sometimes I answer a question before they ask it and they think I have a superpower.

Barbieri continues with some advice for those of you who relate:

My number one tip is: if you are an overthinker, try not to spend too much time with underthinkers, as you will end up thinking not just for yourself, but for them, too. I tend to prefer travelling alone and definitely try to avoid travelling with underthinkers, or else I end up feeling like I’m leading a school trip.

2/ Why People Are So Awful Online | New York Times Magazine*, July 17, 2021. By Roxane Gay

*For non-subscribers, read the NYT piece here: https://archive.is/ViFfY

A very powerful piece by Roxane Gay, on the minefield that social media has become. My writing has been mostly uncontroversial, with long form pieces about chronic pain, travel, and food. But I still got threats over the years, despite the innocuousness of the subject matter. (For the curious, none had to do with my dislike of olives.)

There is no question the Internet has become for some a place to engage in the malicious and utterly degrading, inhumane treatment of others.

Says Gay:

After being on the receiving end of enough aggression, everything starts to feel like an attack. Your skin thins until you have no defenses left. It becomes harder and harder to distinguish good-faith criticism from pettiness or cruelty. It becomes harder to disinvest from pointless arguments that have nothing at all to do with you. An experience that was once charming and fun becomes stressful and largely unpleasant. I don't think I'm alone in feeling this way. We have all become hammers in search of nails.

Why has this happened? How is it acceptable to go from zero to “I’m going to come and kill you” online? This behaviour, if you talk to workers at grocery stores or to flight attendants, is also now mirroring in person. In 2021, flight attendants were subject to “significantly higher” levels of abuse than previously.

Lately, I’ve been thinking that what drives so much of the anger and antagonism online is our helplessness offline. Online we want to be good, to do good, but despite these lofty moral aspirations, there is little generosity or patience, let alone human kindness. There is a desperate yearning for emotional safety. There is a desperate hope that if we all become perfect enough and demand the same perfection from others, there will be no more harm or suffering.” 

I think this applies to the more reasonable arguments, the people who do have misguided kindness in there somewhere. But as someone who received rape and death threats when writing about travel and/or the history of food (what?) there is clearly also a subset of people who simply are happy to target others with twisted glee.

It’s also very apparent that there’s a group of bigoted people, -phobes of many variations, who, as Gay notes, “target the subjects of their ire relentlessly and are largely unchecked by the platforms enabling them,” terrorizing anyone they see as infringing on space they feel entitled to take up in this world.

3/ Astronomy Photographer of the Year Shortlist. | Royal Museums Greenwich.

The shortlisted images from 2021's Astronomy Photographer of the Year competition are out! If you’ve followed me from waaay back when, you know that I often shared astronomy pictures of the day, and information about our galaxies. My love of space hasn’t declined, I’ve just focussed on other learning when I share publicly. But I couldn’t not share the shortlist for the largest astrophotography competition in the world, now in its 13th year.

Two of my favourites from the shortlist:

Harmony, by Stefan Liebermann. A panorama of the Milky Way over the lavender fields in Valensole, France. Says Liebermann,

The colour tones and the lines are really amazing. Unfortunately the light pollution is clearly visible over the whole area. I captured the foreground in the blue hour with a high ISO value because the lavender never stands still.

And, Iceland Vortex, by Larryn Rae. A 250º panorama of the Aurora Borealis in Iceland taken on a freezing winter night. Says Rae:

This is one of the most amazing aurora images I have ever captured as it is totally unique. For me personally, it sums up my whole trip in Iceland in winter - just awe inspiring and feeling like a tiny part of the planet's existence in the face of a very powerful natural environment. I was stoked to have had this moment all to myself.

Winners will be announced September 16th.

4/ How One Musician Recorded a Series of Duets with the Golden Gate Bridge’s Ghostly Hum | SF Chronicle Datebook, July 19, 2021. By Aidin Vaziri.

Many a person in the Bay Area has complained about the endless drone of the Golden Gate Bridge on windy days. And if you’ve spent time in San Francisco, you know there are many windy days.

But one man’s nuisance is another man’s gold, because for Nate Mercereau, the bridge was a source of ghostly inspiration. He read another SF Chronicle piece about how engineers were working to “shut the bridge up”, and wondered about if the sounds could be incorporated into music.

Turns out, yes:

“Actually, the note the bridge makes seems to fluctuate depending on where you are standing,” Mercereau said. “It plays four notes pretty solidly. There’s an A, B, and a G that warble together and create the ominous part of the sound, and then there’s a high C that holds it all together.”

The sounds the bridge makes, a mix between a hum, a whistle and a screech, are caused when strong northwesterly winds blow through slender handrails that were installed on the west side of the span in 2020. The handrails were added to make the wind more aerodynamic and tolerate higher gusts of wind, but the consequence of the installation is…noisy.

Mercereau and engineer, Zach Parkes spent two breezy days in the Marin Headlands, recording improvised duets with the “largest wind instrument in the world”. Check it out yourself:

5/ Self-Medicating Chimps, Pugilistic Shrimp, and Other Remarkable Animals: An Illustrated Guide | MIT Press Reader. Words by Emmanuelle Pouydebat. Illustrations by Julie Terrazzoni.

A catalog of wondrous beings, excerpted from Emmanuelle Pouydebat's book "Atlas of Poetic Zoology.” Beautiful illustrations, flowing prose. The book argues that animals themselves are “lyric poets”. It covers the habits and functions of animals around the world, from chimps to shrimp and everything in between.

“I feel that there’s nothing more important than to pass on, to my son, the little piece of nothing and everything that I’ve observed — the happiness that comes from watching a dragonfly, spider, frog, lizard, elephant, parrot, mouse, orangutan, or ladybug,” Pouydebat writes. “Each individual creature enriches my own existence boundlessly.”

On the kakapo:

Allow me to introduce another evolutionary and adaptive marvel: the parrot that doesn’t fly. The kakapo — which means “night parrot” in Maori — is the heaviest parrot in the world; it can weigh up to 4 kilos and has short wings and feathers that keep it grounded. But birds haven’t always flown. In all likelihood, feathers didn’t develop in order to enable flight so much as to facilitate individual distinctness and communication. In this regard, the kakapo isn’t an anomaly; it’s a living reminder of extinct birds that never flew in the first place.

Reminds me of Aimee Nezhukumatathil’s World of Wonders, an illustrated essay collection so delightfully whimsical that I did not want to end.

Grab Bag!

Sundry things that caught my attention.

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That’s it for this month!
-Jodi