What Am I Up to Now?

Me on my 43rd birthday, in Ottawa, Canada

This page is the most up to date snapshot of what I am working on, since the site rarely reflects real-time.

I am currently in: Ottawa, Ontario. The last few years have been a serious roller coaster, and a struggle.

In 2017, my parents had planned to visit me in Oaxaca. Instead, they flew there to see the city, and bring my belongings back. A lumbar puncture that August led to a chronic cerebrospinal fluid leak, and to the diagnosis of an inflammatory condition called mast cell activation syndrome. I spent many years in bed, 22 hours a day, unable to stand up at all.

As you can imagine, going from a life of travel and food to being incapacitated left me with profound grief that I had to learn how to process.

oaxaca mexico
My former home of: Oaxaca De Juarez, Mexico

I am still mostly bedbound, but have managed to claw back some “uptime” and am able to live independently with support from my brother here in Ottawa. I have had 4 procedures to try and seal the leak, but so far they have not “stuck”. I settled in Ottawa for the long term because my brother is here, and because the medical system is better for my conditions.

For more about spinal CSF leaks and what happened to me from the lumbar puncture, please see this 2022 piece I wrote for CNN about the last few years.

I can’t work very much because of how little time I can stay upright, so this website has suffered as a result. Every minute I’m upright goes against the clock of what I can tolerate to stand up each day; I’ve had to prioritize work that makes me income instead of the pleasure of my site.

That includes:

  • A Patreon community full of wonderful people. We have quarterly zoom calls, I answer questions about chronic pain, and share some of the ways I’ve tried to accommodate my disabilities. Learn more here. (I was also named a Patreon Ambassador in 2022, which has been great as I’ve met so many interesting Creators)
  • My hand-drawn posters featuring maps of food with a Canada map up next.
  • My celiac translation cards! As a celiac, it’s been a challenge to travel and eat safely, even though I love to learn through food. While the main purpose of the site is narrative-based writing, over the years I built very detailed gluten-free translation cards, as well as guides for those seeking to travel. The guides are free, but cards are available for purchase, to help offset the cost of translating and building them. These cards are different because they account for cross-contamination, are researched by a celiac, use local food names, and are translated by native speakers familiar with celiac disease. These cards were even featured in the New York Times – woohoo! And readers write me to say that their doctors in hospitals in UK and USA have recommended the cards for others with celiac disease – feels truly wonderful to help people eat safely.

UPDATES!

Since I can’t travel and computer time is fairly limited, I’ve been updating some of the older posts to ensure that they are current.

Newly updated:

Connect with me:

Jodi Ettenberg
Picture by Jimmy Dau

As always, you can find me on Twitter, Instagram, or Facebook.

Last update for this page: October 28, 2022

Thanks to Derek for /now inspiration.

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