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Tuesday, March 5, 2024

My Large Updates from a Yr of Change


After I began Authorized Nomads as a weblog in 2008, I did so in order that family and friends may observe me after I give up my job as a lawyer to journey the world for one 12 months.

After all, one 12 months changed into many—you all know the story by now. When the positioning started to develop sharply within the years that adopted, I decided to maintain it ad-free and never take any sponsored textual content hyperlinks or advertorial. I didn’t get pleasure from studying websites peppered with advertisements—so I handled my group the best way I wished to be handled.

Years in the past, somebody as soon as instructed me that was a really silly thought, that I’d by no means achieve success if I constructed my enterprise with these sorts of guidelines.

Did I depart some huge cash on the desk?

Positively.

However I wished the Authorized Nomads weblog to be a dwelling tree of my experiences and adventures, with out sacrificing the sorts of studying I wished to give attention to. So I wrote the best way I wished to, and shared what I discovered most attention-grabbing on the time.

Whereas I’m fortunate to have an extremely loyal and engaged group of readers, the draw back to this selection has been that the weblog has taken a again seat to different pages and tasks that do usher in revenue. It’s been particularly dormant throughout the previous few years when my capability to work has been extraordinarily restricted.

So after virtually a full 12 months of not posting on the weblog, I wished to replace you all on what’s been happening. I understand that what I share under will not be information to these of you who get my Curious About The whole lot publication, or are Patreon members. However there may be nonetheless a giant group that obtain neither of these, and it’s excessive time I gave you an replace!

I’m additionally going to be sending out my 2022 reward information quickly, specializing in proficient native artisans right here in Ottawa (who additionally ship to the USA).

Updates, largely in chronological order, under.

I ended up on the entrance web page of CNN for a weekend

In 2021, CNN commissioned a bit about my spinal CSF leak and the way I went from journey and meals blogger to bedbound. The editor, Karla, noticed an Instagram submit I wrote concerning the work to just accept what’s, and the right way to reframe the current second when life enables you to down.

The piece was very exhausting to jot down, each bodily and emotionally. I’ve stated elsewhere that it felt like doing surgical procedure on myself, carving away elements of my story that had been too unwieldy to suit into the transient.

With the assistance of associates who edited my draft earlier than I submitted it to Karla, CNN printed the piece in late January 2022.

I had hoped that the piece would elevate consciousness for this horrible spinal situation that many individuals don’t even know exists. I used to be one of many blissfully unaware, earlier than it occurred to me. I additionally wished to jot down one thing that fellow sufferers may probably ship to their households and really feel seen by, serving to them clarify how painful and debilitating spinal CSF leak is.

CNN determined to place the piece on the entrance web page for a complete weekend.

I fully misplaced observe of who learn it as my inbox exploded with feedback and horrible tales of ache from individuals who may relate. It was an amazing, exhilarating week and I really feel honoured that my writing was so broadly learn and shared.

jodi ettenberg cnn front page
Screenshot from CNN’s frontpage, January 31, 2022

I nonetheless obtain messages from individuals who hit upon the piece and acknowledge their signs on it, sending them down the trail to get handled for spinal CSF leak.

I’m very grateful to Karla for giving me the chance to impact change by my story.

Word: I obtained many questions on my leak story after sharing it, like why I haven’t gone for surgical procedure, or issues I wanted I knew earlier than I bought a lumbar puncture. I did a particular version FAQ publication, and you’ll see solutions to these questions right here.

The Authorized Nomads group adopted two ‘Authorized Lemurs’

Someday, whereas I used to be within the bathe—the place all good concepts derive—I made a decision that I’d undertake a lemur from the Duke Lemur Middle.

Lemurs are a few of my favorite animals (behind tarsiers in fact), and I remorse not visiting them of their residence of Madagascar earlier than I develop into disabled.

Adopting a lemur appeared like a enjoyable distraction from the gaping maw of the information cycle, and I puzzled if any readers would have an interest.

lemur eating rose blossoms
This lemur’s face expresses how I really feel once I take a look at the information. © DLC, 2022

I took to social media with a swiftly made graphic and requested if anybody else can be fascinated by becoming a member of in. 31 individuals stated sure, and I despatched $750 in lemur monies to the Duke Lemur Middle.

In return, we adopted a Coquerel’s sifaka and an aye-aye, and obtain quarterly behaviour updates about our lemurs with plenty of actually cute images.

Considered one of our lemurs, Pompeia, even had a child this spring.

Duke Lemur Center Pompeia and Cornelia
Cornelia and her mum, Pompeia. © DLC, 2022
Duke Lemur Center Pompeia and Cornelia
I can’t even. © DLC, 2022

Our aye-aye is called Agatha, and she or he has a really feisty persona. Her updates usually contain the inventive ways in which she avoids getting in her enclosure when she’s speculated to. (Under is a distinct aye-aye, Binx.)

Duke Lemur Center Aye Aye
LOOK AT THAT FACE

(For readability, that is solely a symbolic adoption; sadly there shall be no precise lemurs despatched our means.)

I’ll be re-upping the adoption course of subsequent February, since most of the Authorized Lemur mother and father have already requested if we may renew once more. If anybody desires to be stored up to date about this eye bleach, please ship me an e-mail and I’ll maintain your identify in thoughts for subsequent 12 months.

I joined the Spinal CSF Leak Basis’s Affected person Advisory Panel for Analysis, and later within the 12 months, their Board of Administrators

Across the identical time as we adopted some lemurs, the American Spinal CSF Leak Basis introduced its choices for a analysis board that’s affected person led, and helps formalize the position of sufferers in shifting analysis ahead.

Analysis is an space of hope for advanced circumstances like me, and I joined the affected person panel for analysis in February 2022, together with a gaggle of different sufferers. All of us admire having the chance to incorporate our voice as analysis research are crafted or carried out.

Later this 12 months, the Basis requested me to affix their board of administrators, and I accepted. Each the US and Canadian Foundations have been very useful, each for me and for sufferers in North America typically. I’m excited to proceed serving the affected person group, and hopefully proceed to boost consciousness in new methods.

I moved to Ottawa

After a 12 months in Aylmer, in Quebec’s Gatineau area, I lastly discovered a spot for me in Ottawa. It’s close to water, it’s an 8-minute drive from my brother, and it’s in a constructing that has so far been very accommodating with respect to my disabilities.

Although I’ve now clawed again a couple of hours a day of ‘uptime’ with my spinal CSF leak, there may be nonetheless lots I can’t do.

Jodi Ettenberg
Me on my forty third birthday, in Ottawa

I’ve to restrict lifting something to five kilos and beneath. I can’t bend on the waist, or twist my backbone. Something that raises intrathecal strain an excessive amount of goes to danger blowing open my leak. (As will Covid, by the best way, so my concern with getting it isn’t solely my danger profile for problems with my immune dysfunction, but additionally {that a} coughing match can take away all of this hard-earned independence.)

I do go for walks when my well being permits, however doing so eats into my “standing up” funds—and means I would like to verify I’m not cooking a meal then (I’ll have a salad as an alternative), and never standing as much as write that day. Since I’m scripting this submit, right now is not going to be a stroll day.

Nonetheless, the sluggish walks I’ve achieved had been completely stunning, particularly in Autumn. And after years absolutely in mattress, they really feel like jubilation.

fall trees ottawa ontario
Stunning bushes right here!

As for the house: my constructing gave me permission to put in a particular machine on my patio door, for the reason that heavy glass door was not one thing I may open safely. It drills into the highest of the patio door and permits me to press a button to open it. I additionally invested in electrical blinds, and in a tabletop freezer. A pal gave me his previous tabletop oven, and each freezer and oven sit aspect by aspect and in a position to be accessed at any time.

I’ll be writing a submit ultimately concerning the accessibility adjustments that helped make this place doable for me. However I do wish to say right here that it feels actually fantastic to have a spot to my very own after so a few years of roaming the world, after which dwelling in different peoples’ homes. 

Oaxaca was meant to be that for me, a house base I cherished that I may eat in and absorb the enjoyment of dwelling in such a particular metropolis. There’s peace in having a small house to my very own that I may construct round my limitations, even when I can’t get up for lengthy every day.

I’m grateful for my dad and stepmum, who gave me a beneficiant reward to assist furnish the house. I had no furnishings once I rented it, and it’s been a problem discovering items which might be the correct peak, and never strongly off-gassing. Their reward allowed me to hunt for the gadgets that labored finest with out scrambling.

IKEA, Fb Market, Kijiji (a Canadian Craigslist different) and a pal who donated his bench cushion sofa to me all got here in helpful. 

The general result’s a spot with a number of furnishings storage—bins and drawers and cabinets—in order that I can entry issues however not have them cluttering the counters. As a result of I can’t bend, it means most issues need to be at waist stage. There’s plenty of decrease drawers that I can’t get to, however household helps me seize issues if I would like them there.

It’s additionally been very nice to herald among the souvenirs from my travels for the primary time. The photograph under is my studying nook, with artwork from my first journey to Asia in 2004, and a papier-mâché girl from my years in Oaxaca.

The duck is new, and pleasant.

apartment ottawa
My studying nook
My standing desk nook, the place the sausage will get made.

I’m largely breaking even, due to my group

After I turned disabled, I apprehensive about how I’d assist myself going ahead. I didn’t wish to be a burden on my household, however I may barely sit up not to mention discover a solution to earn a dwelling. Although I’m privileged that my household would by no means let me starve, it felt very powerful to not have the ability to assist myself in my 40s

At first, my celiac translation playing cards had been promoting fairly properly, and appeared like a means that I may at the very least have some passive revenue to pay payments I incurred. 

When Covid hit, nevertheless, nobody traveled any longer — and my gross sales crashed to close zero.

I then began my Patreon membership, upon the urging of this pretty group who requested for it to assist assist my very modified life. (For these unfamiliar, Patreon is a means for readers to pledge month-to-month recurring memberships, in return for Patreon-only advantages.)

Many individuals arrange their memberships with tiers which have completely different entry. The extra you pay, the extra you might have entry to. I made a decision to have related advantages throughout all tiers (a “assist solely” membership), since I used to be involved my well being would intervene in my potential to present the advantages my Patrons deserved. I wished individuals to pledge what they had been snug with. 

Clearly, my tiers are birds. Birds with names.

jodi ettenberg patreon
Screenshot from my Patreon web page

We’ve had Zoom calls with the group, I do movies answering questions (though I’ve obtained lots much less questions of late so much less of these!), I’ve achieved some video tutorials on meditation strategies, and the Patreon group will get updates about what’s happening extra incessantly.

I’ve misplaced some Patrons in current months, all citing monetary points as the explanation. Understandably, as all the things has develop into costlier, we reduce the extras the place we have to. General, although, the Patreon supplies a reasonably constant revenue stream at at time once I can’t work as I used to.

That implies that I don’t must chase down paid work to make ends meet, and may as an alternative give attention to elevating consciousness for my situation, and sitting on the Basis’s board of administrators (which is unpaid).

In 2021, my celiac playing cards began promoting once more since journey picked up. Every time I’ve “uptime” out there, I work on updating the present celiac guides I’ve, and on working towards new ones. There are a number of new international locations within the works, two of which which might be out being beta examined now with celiac readers who will present suggestions.

Taken collectively, and with my meals map gross sales (see under), I’m making ends meet.

Entrepreneurship is usually anxiety-inducing, because you by no means know if one month will fare properly in comparison with the subsequent. Including to that, I anticipated that when my life modified that my viewers would too. Now not in a position to share enjoyable journey images or meals tales, I puzzled if I’d have anybody studying in any respect.

I’m grateful that lots of you’re nonetheless right here.

My spinal csf leak is secure sufficient that I’ve delayed going again to Duke

I get emails every week asking why I’m not pushing for surgical procedure, or extra blood patching. I feel that is a type of very private issues that many individuals don’t perceive. It was a really dramatic final blood patch, and I’ve to be keen to just accept all the dangers for me to return. 

After the CNN piece got here out, I spoke with my physician at Duke and he supplied to patch me once more. It is a affordable factor, on condition that I used to be sealed for 8 months over the last patch he gave me. However I additionally wanted an epinephrine jab on the desk throughout that very same process, and my immune system has gone into overdrive since.

I used to be additionally instructed I’ve a situation I’ve not written a lot about known as adhesive arachnoiditis, the place my spinal nerves are clumping collectively inflicting plenty of ache.

There are different concerns that think about. It’s not a assure that the patch will work, particularly as we will solely use blood since I’m allergic to the glue. Whereas blood-only does work for a lot of, with a connective tissue dysfunction within the combine, fibrin is extra sturdy (pun supposed), which is why they went with it for me within the first place.

So it’s a matter of accepting dangers, however amongst them that I’ll find yourself internet unfavourable—not simply that the patch might not work.

This mix of things, together with my few hours of ‘standing up time’ a day, has led me to push out patching for now.

I’ve hope that the science evolves to assist a greater chance for my therapeutic. There are new imaging strategies, procedures, and ongoing analysis for this situation. To date, not a lot has proven to be relevant to my advanced case, however you by no means know.

I do plan to get remedy ultimately, as a result of signs abound. After I stand, I nonetheless get the “mind sag” feeling of my backbone being smushed by my mind. I’ve plenty of nerve ache and again ache, and neurological points. And I’m grateful that Duke is keen to patch once more.

I’m simply not there but.

The hand drawn maps of meals that I designed have been promoting since 2014. The plan was, and stays, to do ten international locations in all.

This 12 months, I’m lastly releasing the Canadian meals map—it’s solely been 3 years within the making! The delay is all mine, even if my artist Ella has had New York Occasions bestselling books come out within the interim.

Many of the meals Canadian consider as ‘our meals’ are colonial dishes. There have been no “ketchup chips” or poutine previous to Columbus, that’s for positive. I wished to incorporate Indigenous dishes as properly, and I reached out to the specialists in Indigenous meals in Canada each to verify I used to be together with a cross-section of dishes, but additionally to make sure the spelling was appropriate.

I hope it’s a extra inclusive map because of this.

food map of canada by legal nomads
Meals map of Canada in 12×12 format (with out title)

The store that homes my maps was stagnant since 2016, once I arrange a now-defunct theme and ignored it ever since besides so as to add new maps on the market.

Regardless of that, individuals have purchased maps! And despatched me their photos of their maps throughout their partitions. I’m additionally thrilled to have orders for brand spanking new restaurant openings, with my map adorning their partitions for the delicacies in query.

For this vacation season, I wished to revamp the store so it higher replicate the model of the LN web site, now that I’ve redone issues right here. I did the store redesign myself, as a result of I wished to replace issues as I am going…. So it took me awhile.

Behold! Outdated store:

hand drawn maps of food

And, the brand new store:

Yay! Test it out right here. I’m nonetheless fixing some bugs, but it surely’s largely achieved.

Phew, I feel that’s all the things.

Thanks in your assist, and for coming alongside on this very uncommon experience.

-Jodi

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