My Big Updates from a Year of Change

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My Big Updates from a Year of Change


When I began Legal Nomads as a weblog in 2008, I did so in order that family and friends may comply with me after I stop my job as a lawyer to journey the world for one yr.

Of course, one yr became many—you all know the story by now. When the location 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 neighborhood the best way I wished to be handled.

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

Did I go away some huge cash on the desk?

Definitely.

But I wished the Legal 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.

While I’m fortunate to have an extremely loyal and engaged neighborhood of readers, the draw back to this alternative has been that the weblog has taken a again seat to different pages and tasks that do herald earnings. It’s been particularly dormant throughout the previous couple of years when my capability to work has been extraordinarily restricted.

So after nearly a full yr of not posting on the weblog, I wished to replace you all on what’s been occurring. I notice that what I share under will not be information to these of you who get my Curious About Everything e-newsletter, or are Patreon members. But there may be nonetheless an enormous 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 gifted native artisans right here in Ottawa (who additionally ship to the United States).

Updates, principally in chronological order, under.

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

In 2021, CNN commissioned a chunk 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 in regards to the work to simply accept what’s, and easy methods to reframe the current second when life helps you to down.

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

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 increase 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 doubtlessly 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 whole weekend.

I fully misplaced monitor of who learn it as my inbox exploded with feedback and horrible tales of ache from individuals who may relate. It was an awesome, 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 locate 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.

Note: I acquired 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 acquired a lumbar puncture. I did a particular version FAQ e-newsletter, and you may see solutions to these questions right here.

The Legal Nomads neighborhood adopted two ‘Legal Lemurs’

One day, 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 Center.

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

Adopting a lemur appeared like a enjoyable distraction from the gaping maw of the information cycle, and I questioned 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 unexpectedly made graphic and requested if anybody else can be occupied with becoming a member of in. 31 folks mentioned sure, and I despatched $750 in lemur monies to the Duke Lemur Center.

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

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

Duke Lemur Center Aye Aye
LOOK AT THAT FACE

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

I’ll be re-upping the adoption course of subsequent February, since lots of the Legal Lemur dad and mom have already requested if we may renew once more. If anybody needs to be stored up to date about this eye bleach, please ship me an electronic mail and I’ll hold your identify in thoughts for subsequent yr.

I joined the Spinal CSF Leak Foundation’s Patient Advisory Panel for Research, and later within the yr, their Board of Directors

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

Research 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. We all recognize having the chance to incorporate our voice as analysis research are crafted or carried out.

Later this yr, the Foundation requested me to affix their board of administrators, and I accepted. Both 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 neighborhood, and hopefully proceed to lift consciousness in new methods.

I moved to Ottawa

After a yr 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 up to now been very accommodating with respect to my disabilities.

Though I’ve now clawed again a number of hours a day of ‘uptime’ with my spinal CSF leak, there may be nonetheless quite a bit I can not do.

Jodi Ettenberg
Me on my forty third birthday, in Ottawa

I’ve to restrict lifting something to five kilos and underneath. I can’t bend on the waist, or twist my backbone. Anything that raises intrathecal stress an excessive amount of goes to threat blowing open my leak. (As will Covid, by the best way, so my concern with getting it isn’t solely my threat profile for issues with my immune dysfunction, but in addition {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 want 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, immediately won’t be a stroll day.

Still, the gradual walks I’ve accomplished have been completely lovely, particularly in Autumn. And after years totally in mattress, they really feel like jubilation.

fall trees ottawa ontario
Beautiful timber right here!

As for the condominium: my constructing gave me permission to put in a particular gadget 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 outdated tabletop oven, and each freezer and oven sit facet by facet and in a position to be accessed at any time.

I’ll be writing a submit finally in regards to the accessibility modifications that helped make this place doable for me. But 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 is peace in having a small area to my very own that I may construct round my limitations, even when I can’t arise for lengthy every day.

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

IKEA, Facebook Marketplace, Kijiji (a Canadian Craigslist various) and a pal who donated his bench cushion sofa to me all got here in useful. 

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

It’s additionally been very nice to herald a few of 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 woman 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 principally breaking even, because of my neighborhood

When I turned disabled, I anxious 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 strategy to earn a dwelling. Though I’m privileged that my household would by no means let me starve, it felt very robust to not be capable of assist myself in my 40s

At first, my celiac translation playing cards have been promoting fairly nicely, and appeared like a approach that I may a minimum of have some passive earnings to pay payments I incurred. 

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

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

Many folks arrange their memberships with tiers which have totally different entry. The extra you pay, the extra you have got entry to. I made a decision to have comparable advantages throughout all tiers (a “support only” membership), since I used to be involved my well being would intervene in my capacity to provide the advantages my Patrons deserved. I wished folks to pledge what they have been snug with. 

Obviously, my tiers are birds. Birds with names.

jodi ettenberg patreon
Screenshot from my Patreon web page

We’ve had Zoom calls with the neighborhood, I do movies answering questions (though I’ve acquired quite a bit much less questions of late so much less of these!), I’ve accomplished some video tutorials on meditation methods, and the Patreon neighborhood will get updates about what’s occurring extra regularly.

I’ve misplaced some Patrons in latest months, all citing monetary points as the rationale. Understandably, as every thing has change into costlier, we reduce the extras the place we have to. Overall, although, the Patreon offers a reasonably constant earnings 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 might as an alternative give attention to elevating consciousness for my situation, and sitting on the Foundation’s board of administrators (which is unpaid).

In 2021, my celiac playing cards began promoting once more since journey picked up. Whenever I’ve “uptime” obtainable, I work on updating the present celiac guides I’ve, and on working towards new ones. There are a number of new nations within the works, two of which which are 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 mostly anxiety-inducing, because you by no means know if one month will fare nicely in comparison with the following. Adding to that, I anticipated that when my life modified that my viewers would too. No longer in a position to share enjoyable journey images or meals tales, I questioned if I’d have anybody studying in any respect.

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

My spinal csf leak is steady 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 simply accept all the dangers for me to return. 

After the CNN piece got here out, I spoke with my physician at Duke and he provided to patch me once more. This is an inexpensive factor, provided that I used to be sealed for 8 months over the past patch he gave me. But 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 advised I’ve a situation I’ve not written a lot about referred to as adhesive arachnoiditis, the place my spinal nerves are clumping collectively inflicting a variety of ache.

There are different issues that think about. It’s not a assure that the patch will work, particularly as we are able to solely use blood since I’m allergic to the glue. While blood-only does work for a lot of, with a connective tissue dysfunction within the combine, fibrin is extra sturdy (pun meant), 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 could find yourself web detrimental—not simply that the patch could not work.

This mixture 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 likelihood for my therapeutic. There are new imaging methods, procedures, and ongoing analysis for this situation. Thus far, not a lot has proven to be relevant to my advanced case, however you by no means know.

I do plan to get therapy finally, as a result of signs abound. When I stand, I nonetheless get the “brain sag” feeling of my backbone being smushed by my mind. I’ve a variety 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 nations in all.

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

Most of the meals Canadian consider as ‘our foods’ are colonial dishes. There have been no “ketchup chips” or poutine previous to Columbus, that’s for certain. I wished to incorporate Indigenous dishes as nicely, 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 in addition to make sure the spelling was right. I hope it’s a extra inclusive map in consequence.

The store that homes my maps has been 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.

Despite that, folks have purchased maps!

But for this vacation season I hoped to get it became a shiner, sleeker store that higher matched the Legal Nomads redesign.

I did this one myself, as a result of I wished to replace issues as I’m going…. So it took me awhile. Behold!

Old store:

hand drawn maps of food

And, the brand new store:

Yay! Check it out right here. I’m nonetheless fixing some bugs, however it’s principally accomplished.

(The Canada map isn’t in there but, however will probably be quickly.)

Phew, I feel that’s every thing.

Thank you in your assist, and for coming alongside on this very uncommon journey.

-Jodi

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