Reflections on Resilience: Jodi Ettenberg’s Year of Unwavering Purpose Amidst Health Challenges and Advocacy
The journey of Legal Nomads, once a chronicle of global adventures, has transformed into a testament of resilience, adaptation, and profound purpose. For Jodi Ettenberg, the past year, particularly 2025, has been a period of intense personal challenge interwoven with significant professional achievements and dedicated advocacy, all navigated from a vastly altered physical landscape. What began as a blog detailing round-the-world escapades has evolved into a multifaceted enterprise deeply shaped by reader needs and Ettenberg’s own evolving health realities, culminating in a year marked by substantial contributions despite debilitating physical constraints.
The narrative of Legal Nomads is intrinsically linked to its founder’s personal evolution. Ettenberg’s initial leap from a structured legal career into the unknown of entrepreneurship and global travel was fraught with the "panic of the not-knowing." This uncertainty, however, paved the way for an organic growth of her platform, driven by the direct feedback and expressed needs of her growing readership. Early on, the focus was on her travel experiences. As the community expanded, so did the requests for specific guidance. Lawyers sought advice on career transitions and managing uncertainty, leading to the creation of resources on alternative careers. Celiac travelers implored her to share strategies for safe food navigation, which spurred the development of celiac guides and translation cards. The desire for personal connection led to food tours and, eventually, country-based artwork. Ettenberg’s evolution also saw the birth of the "Links I Loved" newsletter, a curated collection of articles, which later transformed into "Curious About Everything" following the onset of her spinal CSF leak. Projects like a digital storytelling course and advice on public speaking fear were conceived but ultimately deferred due to her health.
The defining challenge for Ettenberg has been her spinal CSF leak, an event that dramatically reshaped her life eight years ago. This condition necessitates a life lived within significant physical limitations, often confined to bed or her apartment, especially during winter months when the risk of exacerbating her condition by venturing outside is heightened. Her days are now measured not in billable hours, but in "standing increments," a stark reminder of the daily struggle to manage energy and physical capacity. This concept of "up-time" is often described by fellow patients as an hourglass, symbolizing both the dwindling nature of her available physical energy and the downward pressure exerted on her brain and spine. The need to meticulously count seconds upon standing, a stark contrast to her earlier desire to escape the rigmarole of billable hours, underscores the profound adjustment required. Despite these constraints, Ettenberg emphasizes the power of technology and community, which have enabled her to maintain an active life beyond her physical limitations. She has continued to engage through social media, participate in meaningful projects, and assume a significant leadership role as a volunteer for the Spinal CSF Leak Foundation.
Living with chronic pain, as Ettenberg articulates, is an "exhausting" endeavor, its vastness difficult to quantify, as even the attempt to describe it consumes precious energy. This "granularity" of existence, a life lived in tiny increments, is often incomprehensible to those who have not experienced it. While empathy is possible, the full scope of such a constricted experience—the constant mental accounting of "up-time" seconds, the inability to perform simple tasks like tying one’s shoes—is a reality that typically goes unconsidered until one is forcibly immersed in it.
The beginning of 2025 presented a particularly bleak outlook for Ettenberg. A fall in the shower on Christmas Day of the previous year led to a significant setback, reducing her functional capacity to near zero. The subsequent months were largely spent in bed, hoping for improvement, with time seemingly dragging as she struggled to engage with projects. The challenges of the past year extended beyond her own health, encompassing significant family concerns. Both her father and stepmother required hospitalization, with her father’s illness being particularly prolonged. The dual burden of managing their care, fulfilling her role at the Spinal CSF Leak Foundation, maintaining her business, and coping with her own severe health issues pushed her to the brink.
Despite these formidable obstacles, looking back at 2025 reveals a year of remarkable productivity, achieved largely from a supine position. Ettenberg’s infrequent publishing schedule, coupled with the sheer density of her experiences, prompted her to compile a list of accomplishments she is proud of, both for public acknowledgment and as a personal record.
Monthly Curations: The "Curious About Everything" Newsletter
Ettenberg’s "Curious About Everything" (CAE) newsletter, now in its fifth year, continues to be a cornerstone of her content. Its origins trace back to an email list called "Linkies of the Day" from her lawyering days. Upon embarking on her travels in 2008 and launching Legal Nomads, this compilation ceased due to the demands of travel and less ubiquitous internet access. The "Links I Loved" newsletter was later revived as readers requested a more consolidated format for the interesting pieces she shared on Twitter. This newsletter was maintained until Ettenberg sustained her leak. Recognizing that her life would not return to its previous state, she re-evaluated her business model, with curiosity emerging as a driving force. This introspection led to the rebranding of "Links I Loved" into "Curious About Everything," a newsletter embodying her enduring quest for knowledge and discovery.
The first issue of CAE was distributed on November 15, 2020. As of December, Ettenberg had published the 57th issue. Each newsletter features a "start here" section, a compilation of the best of everything else she’s read, and a "quick links" section for shorter articles. A dedicated segment highlights an artist whose work has captured her attention each month. Importantly, CAE remains free to subscribers, supported by revenue generated from celiac cards and her Patreon. Ettenberg emphasizes the significant effort involved in producing each monthly edition, driven by her persistent desire to learn and share compelling content with her audience.
Empowering Safe Travel: Celiac Translation Cards and Guides
Ettenberg’s commitment to assisting celiac travelers remains a vital aspect of her work. Her celiac translation cards, initiated after a challenging trip to Japan in 2015, have become an indispensable tool for individuals seeking to navigate international dining safely. What began as a personal solution and a collaborative effort with a reader to test a Japanese beta card has burgeoned into a comprehensive resource. Currently, the cards are available in 21 languages, with specialized versions for travel agents, physicians, and hospitals.
Despite the frustration of intellectual property theft, where purchased cards are sometimes resold without authorization, the core mission of enabling safe eating for celiacs worldwide persists. This year marked a significant milestone: the sale of the 25,000th celiac translation card. Furthermore, three new languages—Croatian, Korean, and Khmer—were added to the repertoire, with plans for additional languages in 2026.
Complementing the translation cards, Ettenberg has developed an extensive series of "essential gluten-free guides." These guides, meticulously researched and often created in collaboration with readers to ensure accuracy, provide in-depth information on safe and unsafe foods, suitable restaurants and shops, and include the relevant translation card for each country. This year saw the publication of guides for Cambodia and South Korea. These guides, each comprising 3,000-5,000 words, were pioneers in detailing specific foods within a country rather than solely listing establishments. Ettenberg’s emphasis on understanding local cuisine stems from her personal experience of seeking out street food, which often requires a deeper knowledge of ingredients and preparation methods. The gluten-free guide series now spans 15 countries, with further additions anticipated for 2026.
A Platform for Uncategorized Expression: The Patreon Community
Ettenberg’s Patreon membership has evolved into a crucial space for content that defies categorization, a direct result of her "curious about everything" ethos. While advised to narrow her focus for business growth, Ettenberg has consistently prioritized authenticity, ensuring her work reflects her multifaceted interests. This approach, while perhaps deemed naive by some, has allowed her to navigate her mobile years on her own terms.
The current reality of her health has introduced a finite capacity for creating content. While she can utilize her phone for communication, periods of intense pain render creative endeavors impossible. Her Patreon, a concept suggested by readers, offers a flexible solution. Instead of tiered deliverables, Ettenberg established a "Support Only" Patreon, allowing members to contribute at various levels while receiving the same access. This model enables her to provide content as her health permits, fostering a supportive ecosystem. The tiers are named after birds: Bob the bluebird, Fiona the robin, and Arthur, the raven, who also serves as the mascot for Legal Nomads and CAE, symbolizing curiosity itself.
Through her Patreon, Ettenberg shares pieces that don’t fit neatly into her other platforms, alongside overflow links, brief life updates, and photographs. The consistent income generated from her Patreon is instrumental in allowing her to dedicate significant time to her volunteer work with the Spinal CSF Leak Foundation. She notes the particular importance of this support, as she is ineligible for disability benefits in Canada. To encourage new members, an offer of 15% off annual sign-ups with code 2025YEAREND was extended until January 5th.
Advancing Medical Understanding: Research Paper and Foundation Leadership
A significant development in Ettenberg’s year was her co-authorship of a research paper published in the AJNR (American Journal of Neuroradiology). The paper, titled "Enhancing Clarity in Dynamic Myelography Reporting: Results of a Survey of Patients and Referring Providers Evaluating a Standardized Reporting System in the Myelographic Work-Up of Patients with Suspected Spontaneous Intracranial Hypotension," proposes a new standardized reporting measure for dynamic myelography. Myelography is a diagnostic imaging technique used to identify spinal CSF leaks by injecting contrast dye into the spinal fluid. Dynamic myelography, particularly dynamic CT Myelography, involves repositioning the patient during the scan to visualize the movement of contrast dye, aiding in the localization of certain types of leaks.
The proposed system, SIH-RADS, aims to improve understanding of the condition for both patients and physicians, with the latter expressing a preference for it over traditional reporting methods. The paper’s findings suggest enhanced clarity and a more standardized approach to reporting, which is crucial for accurate diagnosis and treatment of spontaneous intracranial hypotension (SIH), also known as CSF leak.
Beyond her research contribution, Ettenberg’s leadership within the Spinal CSF Leak Foundation has expanded significantly. After volunteering since 2021, she was elected Board President in 2025. This role, while unexpected, has allowed her to contribute to research and progress in the field in a more official capacity. A substantial portion of her energy this year was dedicated to the Foundation, including spearheading the hiring of a new executive director. This involved managing over 130 applications, developing interview questions, coordinating the interview process with board members, and overseeing the legal aspects of hiring with pro bono counsel.
In addition to the executive director search, Ettenberg was involved in planning the annual conference, launching the first international patient registry for spinal CSF leak, organizing awareness initiatives like Leak Week, and managing board meetings. Her commitment to these volunteer efforts is driven by the realization that her business, while self-sustaining, requires less day-to-day input, allowing her to channel her energy into the Foundation’s vital work. She expressed concern that critical projects might falter if she were to disengage. This leadership experience has been profoundly humbling, integrating her legal expertise, business acumen, and advocacy skills, providing a sense of cognitive grounding despite her debilitating neurological condition. She anticipates transitioning some of the de facto executive director responsibilities to the newly hired director while maintaining her role as Board President.
Amplifying Voices: Conference Presentations and Media Engagements
Ettenberg’s advocacy extended to speaking at a conference on barriers to care in spinal CSF leak, an accomplishment made more significant by the fact that she delivered the presentation while standing. The talk, structured as a "fireside chat" with Dr. Andrew Callen, a neuroradiologist, explored patient versus physician perspectives on various aspects of the condition, fostering an open dialogue. The feedback was positive, and Ettenberg expressed her honor at being invited to participate as the sole patient speaker, alongside patient moderators who facilitated post-physician talk discussions.
Further amplifying her voice, Ettenberg recorded an episode for "The Hearing," a legal podcast by Thomson Reuters. The episode, which launched in 2018 and explores legal and public policy landscapes, focused on Ettenberg’s advice for lawyers considering career changes and the trajectory of her own professional life. This 53-minute conversation, enjoyed by Ettenberg, provided an opportunity to share her experiences with a global audience, revisiting her past comfort with podcast interviews before her health significantly impacted her capacity. The episode is available on Apple Podcasts and Spotify.
Community Impact: Fundraising Success
The collective efforts of Ettenberg’s community culminated in a significant fundraising achievement. During Leak Week, the annual awareness week for spinal CSF leak, the community successfully reached the top of the leaderboard, raising $4,217 USD. Ettenberg expressed deep gratitude for the contributions and donations, underscoring the impact of their collective support.
Sustained Impact and Future Outlook
Despite a year characterized by chaos and density, Ettenberg reflects with gratitude on her community and the elements of her business that have facilitated her learning and advocacy. The integration of her diverse experiences—lawyer, traveler, creator, and advocate—has provided a profound sense of purpose. As she navigates the ongoing challenges of her condition, Ettenberg remains committed to her work, with a focus on gradually shifting operational duties to allow more time for her core business and continued leadership within the Spinal CSF Leak Foundation. Her journey, once a path of global exploration, has transformed into a powerful narrative of internal resilience and external impact, demonstrating that purpose and productivity can thrive even within the most challenging circumstances.
