Terminally Online

Key takeaways

Humor can be a powerful tool to cope with difficult situations, including terminal illnesses.
Social media can create meaningful connections and communities, particularly in the face of adversity.
Brooke has utilized her platform to transform her personal journey into a collective experience, sharing resources and insights with others.
There remains a pressing need for advocacy and funding for ALS research to better understand and combat the disease.
Brooke's journey shows the importance of normalizing conversations around terminal illnesses and how humor can coexist with serious topics.

Summary

Navigating Terminal Illness with Humor

Brooke Eby shares her journey with ALS, reflecting on how she initially felt about sharing her experiences and opting for humor as a coping mechanism. After being diagnosed with ALS, she began documenting her life and struggles on TikTok, slowly building an audience that appreciates her edgy comedic style. Brooke's exploration of how humor helps her manage the weight of her diagnosis invites listeners to consider the connection between laughter and resilience.

The Evolution of Social Media Engagement

In this segment, Brooke discusses her relationship with social media throughout her twenties, illustrating how it changed from a private affair to a platform for immense outreach. She emphasizes how her diagnosis propelled her to build a community that intimately understands her hardships, creating a unique space filled with support and encouragement.

The Journey of Awareness and Community

Brooke's decision to share her life on social media has transformed how she interacts with her community. She highlights the power of collective support and the immediacy of responses she's able to generate through her sizeable following. Taking cues from her experiences, she clarifies the need for actionable resources for ALS patients, particularly through digital avenues.

Facing the Reality of Disease Progression

Brooke candidly discusses the physical impact of ALS and her personal reflections on the disease's progression. She emphasizes the surreal feeling of viewing her past self through her social media content, underscoring the rapid changes in her capabilities. As she addresses her future, she reveals her plans to continue documenting her journey and hopes to foster a deeper understanding of living with ALS.

Inspire Action for ALS Research

In her closing thoughts, Brooke underscores the crucial need for funding in ALS research as a fight against the disease's progression. She humorously appeals to wealthy individuals to prioritize supporting medical research and innovation over less urgent pursuits, positioning herself as a vocal advocate for her cause.

Show notes

"Should I be joking at a time like this?"

That's the question then 33-year-old Brooke Eby asked herself when she uploaded her first piece of TikTok comedy in 2022, about being diagnosed with a terminal illness. Brooke's since built an audience of hundreds of thousands of people who are rooting for, and laughing with, her. Sometimes it gets weird. Brooke talks to Ben and Amory about how facing death changed her relationship with social media and online community.

Show notes:

Brooke Eby's TikTok, Instagram, and YouTube
ALSTogether
When Your Terminal Illness Makes You a TikTok Star (The New York Times)

This episode was written and produced by Grace Tatter. It was co-hosted by Amory Sivertson and Ben Brock Johnson. Mix and sound design by Emily Jankowski.