My Big Updates from a Year of Change

My Big Updates from a Year of Change

Save on your hotel - hotelscombined.com

When I started Legal Nomads as a blog in 2008, I did so so that friends and family could follow me after I quit my job as a lawyer to travel the world for one year.

Of course, one year turned into many—you all know the story by now. When the site began to grow sharply in the years that followed, I made a decision to keep it ad-free and not take any sponsored text links or advertorial. I did not enjoy reading sites peppered with ads—so I treated my community the way I wanted to be treated.

Years ago, someone once told me that was a very stupid idea, that I’d never be successful if I built my business with those kinds of rules.

Did I leave a lot of money on the table?

Definitely.

But I wanted the Legal Nomads blog to be a living tree of my experiences and adventures, without sacrificing the kinds of reading I wanted to focus on. So I wrote the way I wanted to, and shared what I found most interesting at the time.

While I am lucky to have an incredibly loyal and engaged community of readers, the downside to this choice has been that the blog has taken a back seat to other pages and projects that do bring in income. It’s been especially dormant during the last few years when my capacity to work has been extremely limited.

So after almost a full year of not posting on the blog, I wanted to update you all on what’s been going on. I realize that what I share below may not be news to those of you who get my Curious About Everything newsletter, or are Patreon members. But there is still a big group that receive neither of those, and it’s high time I gave you an update!

I’m also going to be sending out my 2022 gift guide soon, focusing on talented local artisans here in Ottawa (who also ship to the United States).

Updates, mostly in chronological order, below.

I ended up on the front page of CNN for a weekend

In 2021, CNN commissioned a piece about my spinal CSF leak and how I went from travel and food blogger to bedbound. The editor, Karla, saw an Instagram post I wrote about the work to accept what is, and how to reframe the present moment when life lets you down.

The piece was very hard to write, both physically and emotionally. I’ve said elsewhere that it felt like doing surgery on myself, carving away parts of my story that were too unwieldy to fit into the brief.

With the help of friends who edited my draft before I submitted it to Karla, CNN published the piece in late January 2022.

I had hoped that the piece would raise awareness for this terrible spinal condition that many people don’t even know exists. I was one of the blissfully unaware, before it happened to me. I also wanted to write something that fellow patients could potentially send to their families and feel seen by, helping them explain how painful and debilitating spinal CSF leak is.

CNN decided to put the piece on the front page for an entire weekend.

I completely lost track of who read it as my inbox exploded with comments and terrible stories of pain from people who could relate. It was an overwhelming, exhilarating week and I feel honoured that my writing was so widely read and shared.

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

I still receive messages from people who stumble on the piece and recognize their symptoms on it, sending them down the path to get treated for spinal CSF leak.

I’m very grateful to Karla for giving me the opportunity to effect change through my story.

Note: I received many questions about my leak story after sharing it, like why I haven’t gone for surgery, or things I wished I knew before I got a lumbar puncture. I did a special edition FAQ newsletter, and you can see answers to those questions here.

The Legal Nomads community adopted two ‘Legal Lemurs’

One day, while I was in the shower—where all good ideas derive—I decided that I would adopt a lemur from the Duke Lemur Center.

Lemurs are some of my favourite animals (behind tarsiers of course), and I regret not visiting them in their home of Madagascar before I become disabled.

Adopting a lemur seemed like a fun distraction from the gaping maw of the news cycle, and I wondered if any readers would be interested.

lemur eating rose blossoms
This lemur’s face expresses how I feel when I look at the news. © DLC, 2022

I took to social media with a hastily made graphic and asked if anyone else would be interested in joining in. 31 people said yes, and I sent $750 in lemur monies to the Duke Lemur Center.

In return, we adopted a Coquerel’s sifaka and an aye-aye, and receive quarterly behaviour updates about our lemurs with a lot of really cute photos.

One of our lemurs, Pompeia, even had a baby 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 named Agatha, and she has a very feisty personality. Her updates often involve the creative ways that she avoids going in her enclosure when she’s supposed to. (Below is a different aye-aye, Binx.)

Duke Lemur Center Aye Aye
LOOK AT THAT FACE

(For clarity, this is only a symbolic adoption; sadly there will be no actual lemurs sent our way.)

I’ll be re-upping the adoption process next February, since many of the Legal Lemur parents have already asked if we could renew again. If anyone wants to be kept updated about this eye bleach, please send me an email and I’ll keep your name in mind for next year.

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

Around the same time as we adopted some lemurs, the American Spinal CSF Leak Foundation announced its selections for a research board that is patient led, and helps formalize the role of patients in moving research forward.

Research is an area of hope for complex cases like me, and I joined the patient panel for research in February 2022, along with a group of other patients. We all appreciate having the opportunity to include our voice as research studies are crafted or conducted.

Later this year, the Foundation asked me to join their board of directors, and I accepted. Both the US and Canadian Foundations have been very helpful, both for me and for patients in North America generally. I am excited to continue serving the patient community, and hopefully continue to raise awareness in new ways.

I moved to Ottawa

After a year in Aylmer, in Quebec’s Gatineau region, I finally found a place for me in Ottawa. It’s near water, it’s an 8-minute drive from my brother, and it’s in a building that has thus far been very accommodating with respect to my disabilities.

Though I have now clawed back a few hours a day of ‘uptime’ with my spinal CSF leak, there is still a lot I cannot do.

Jodi Ettenberg
Me on my 43rd birthday, in Ottawa

I have to limit lifting anything to 5 pounds and under. I can’t bend at the waist, or twist my spine. Anything that raises intrathecal pressure too much is going to risk blowing open my leak. (As will Covid, by the way, so my concern with getting it is not only my risk profile for complications with my immune dysfunction, but also that a coughing fit can take away all of this hard-earned independence.)

I do go for walks when my health allows, but doing so eats into my “standing up” budget—and means I need to make sure I’m not cooking a meal then (I’ll have a salad instead), and not standing up to write that day. Since I’m writing this post, today will not be a walk day.

Still, the slow walks I have done were absolutely beautiful, especially in Autumn. And after years fully in bed, they feel like jubilation.

fall trees ottawa ontario
Beautiful trees here!

As for the apartment: my building gave me permission to install a special device on my patio door, since the heavy glass door was not something I could open safely. It drills into the top of the patio door and allows me to press a button to open it. I also invested in electric blinds, and in a tabletop freezer. A friend gave me his old tabletop oven, and both freezer and oven sit side by side and able to be accessed at any time.

I’ll be writing a post eventually about the accessibility changes that helped make this place doable for me. But I do want to say here that it feels really wonderful to have a place to my own after so many years of roaming the world, and then living in other peoples’ houses. 

Oaxaca was meant to be that for me, a home base I loved that I could eat in and soak up the joy of living in such a special city. There is peace in having a small space to my own that I could build around my limitations, even if I can’t stand up for long each day.

I am thankful for my dad and stepmum, who gave me a generous gift to help furnish the apartment. I had no furniture when I rented it, and it’s been a challenge finding pieces that are the right height, and not strongly off-gassing. Their gift allowed me to hunt for the items that worked best without scrambling.

IKEA, Facebook Marketplace, Kijiji (a Canadian Craigslist alternative) and a friend who donated his bench cushion couch to me all came in handy. 

The overall result is a place with lots of furniture storage—bins and drawers and shelves—so that I can access things but not have them cluttering the counters. Because I can’t bend, it means most things have to be at waist level. There’s a lot of lower drawers that I can’t get to, but family helps me grab things if I need them there.

It’s also been really nice to bring in some of the souvenirs from my travels for the first time. The photo below is my reading corner, with art from my first trip to Asia in 2004, and a papier-mâché lady from my years in Oaxaca.

The duck is new, and delightful.

apartment ottawa
My reading nook
My standing desk nook, where the sausage gets made.

I am mostly breaking even, thanks to my community

When I became disabled, I worried about how I would support myself going forward. I did not want to be a burden on my family, but I could barely sit up let alone find a way to earn a living. Though I am privileged that my family would never let me starve, it felt very tough to not be able to support myself in my 40s

At first, my celiac translation cards were selling quite well, and seemed like a way that I could at least have some passive income to pay bills I incurred. 

When Covid hit, however, no one traveled any longer — and my sales crashed to near zero.

I then started my Patreon membership, upon the urging of this lovely community who asked for it to help support my very changed life. (For those unfamiliar, Patreon is a way for readers to pledge monthly recurring memberships, in return for Patreon-only benefits.)

Many people set up their memberships with tiers that have different access. The more you pay, the more you have access to. I decided to have similar benefits across all tiers (a “support only” membership), since I was concerned my health would intervene in my ability to give the benefits my Patrons deserved. I wanted people to pledge what they were comfortable with. 

Obviously, my tiers are birds. Birds with names.

jodi ettenberg patreon
Screenshot from my Patreon page

We’ve had Zoom calls with the community, I do videos answering questions (although I’ve received a lot less questions of late so less of those!), I have done some video tutorials on meditation techniques, and the Patreon community gets updates about what’s going on more frequently.

I have lost some Patrons in recent months, all citing financial issues as the reason. Understandably, as everything has become more expensive, we cut the extras where we need to. Overall, though, the Patreon provides a fairly consistent income stream at at time when I can’t work as I used to.

That means that I don’t need to chase down paid work to make ends meet, and can instead focus on raising awareness for my condition, and sitting on the Foundation’s board of directors (which is unpaid).

In 2021, my celiac cards started selling again since travel picked up. Whenever I have “uptime” available, I work on updating the existing celiac guides I have, and on working toward new ones. There are several new countries in the works, two of which that are out being beta tested now with celiac readers who will provide feedback.

Taken together, and with my food map sales (see below), I’m making ends meet.

Entrepreneurship is generally anxiety-inducing, since you never know if one month will fare well compared to the next. Adding to that, I expected that when my life changed that my audience would too. No longer able to share fun travel photos or food stories, I wondered if I’d have anyone reading at all.

I am thankful that many of you are still here.

My spinal csf leak is stable enough that I have delayed going back to Duke

I get emails each week asking why I’m not pushing for surgery, or more blood patching. I think this is one of those very personal things that many people do not understand. It was a very dramatic last blood patch, and I have to be willing to accept all the risks for me to go back. 

After the CNN piece came out, I spoke with my doctor at Duke and he offered to patch me again. This is a reasonable thing, given that I was sealed for 8 months during the last patch he gave me. But I also needed an epinephrine jab on the table during that same procedure, and my immune system has gone into overdrive since.

I was also told I have a condition I’ve not written much about called adhesive arachnoiditis, where my spinal nerves are clumping together causing a lot of pain.

There are other considerations that factor in. It’s not a guarantee that the patch will work, especially as we can only use blood since I am allergic to the glue. While blood-only does work for many, with a connective tissue disorder in the mix, fibrin is more durable (pun intended), which is why they went with it for me in the first place.

So it’s a matter of accepting risks, but among them that I may end up net negative—not just that the patch may not work.

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

I have hope that the science evolves to support a better probability for my healing. There are new imaging techniques, procedures, and ongoing research for this condition. Thus far, not much has shown to be applicable to my complex case, but you never know.

I do plan to get treatment eventually, because symptoms abound. When I stand, I still get the “brain sag” feeling of my spine being smushed by my brain. I have a lot of nerve pain and back pain, and neurological issues. And I’m grateful that Duke is willing to patch again.

I am just not there yet.

The hand drawn maps of food that I designed have been selling since 2014. The plan was, and remains, to do ten countries in all.

This year, I am finally releasing the Canadian food map—it’s only been 3 years in the making! The delay is all mine, despite the fact that my artist Ella has had New York Times bestselling books come out in the interim.

Most of the foods Canadian think of as ‘our foods’ are colonial dishes. There were no “ketchup chips” or poutine prior to Columbus, that’s for sure. I wanted to include Indigenous dishes as well, and I reached out to the specialists in Indigenous foods in Canada both to make sure I was including a cross-section of dishes, but also to ensure the spelling was correct.

I hope it’s a more inclusive map as a result.

food map of canada by legal nomads
Food map of Canada in 12×12 format (without title)

The shop that houses my maps was stagnant since 2016, when I set up a now-defunct theme and ignored it ever since except to add new maps for sale.

Despite that, people have bought maps! And sent me their pictures of their maps all over their walls. I am also thrilled to have orders for new restaurant openings, with my map adorning their walls for the cuisine in question.

For this holiday season, I wanted to redesign the shop so it better reflect the style of the LN website, now that I’ve redone things here. I did the shop redesign myself, because I wanted to update things as I go…. So it took me awhile.

Behold! Old shop:

hand drawn maps of food

And, the new shop:

Yay! Check it out here. I’m still fixing some bugs, but it’s mostly done.

Phew, I think that’s everything.

Thank you for your support, and for coming along on this very unusual ride.

-Jodi


Source link Travel News

Related posts

Leave a Comment