Brooke Eby whose death at 37 was announced October 1 shared her life with ALS through humor and honesty. Her audience was substantial: a combined following of nearly 600,000 followers across Instagram and TikTok.

She gave herself time to fall apart. Eby described two to three months of shock after her diagnosis. She wanted people seeing her upbeat videos to understand that she hadn’t felt that way from the beginning.

She borrowed courage from a friend. Arriving at a college friend’s wedding with a walker, Eby felt embarrassed and wanted to leave. Her friend suggested making the evening fun. They stayed. Guests eventually limboed under the walker and took rides on it. Eby described that evening as a turning point.

She gave people an opening to help. Eby worried that disclosing her diagnosis on LinkedIn would blur professional boundaries but the opposite happened — those relationships helped build an employee network supporting ALS causes.

She found a reason to share beyond herself. A woman in her support group offered to let Eby tell her story if sharing her own felt too uncomfortable. Eby said that shifted her perspective toward how speaking openly might help someone else.

She allowed herself to be honest. Later, Eby openly described anger, discomfort and feeling no gratitude.

Her example leaves room for all of that: you can accept help, contribute and enjoy a moment while still hurting.

“I can’t emphasize enough, being funny and being happy are two very different things.” — Brooke Eby (making people laugh didn’t mean she wasn’t hurting)

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