Brooke Eby shares a raw and powerful moment as she admits she doesn’t feel grateful during the later stages of ALS

13 August 2025

Brooke Eby, the social media creator known for her candid ALS updates, recently posted a profoundly honest video to her 247,000 TikTok followers titled “My Dying Diary,” in which she described the late stages of her disease as a slow, crushing confinement as though cement were pouring over her body a little more each year.

At 36 years old and facing nearly total paralysis, she now relies on a feeding tube and a breathing machine, though she still retains the ability to speak, move facial muscles, and control a couple of fingers. Yet in perhaps her most unguarded expression yet, she admitted that she does not feel grateful defying the typical inspirational narrative many expect at the end of life. She warned viewers that if she suddenly starts expressing gratitude in the coming days, they should treat it as a “code red.” Her willingness to challenge comforting tropes offers a window into the emotional complexity of living with a terminal illness.

Eby’s disclosure heartfelt and unflinching cuts straight to the bones of what it means to endure ALS. Though she retains her trademark humor and personality, she acknowledged the true emotional weight of her condition. She confessed the word “grateful” felt almost meaningless amid persistently physical discomfort, equipment tethering her to machines, and the weakening of her own body. Eby described the ordinary losses of this progression with brutal clarity: it feels impossible to imagine a future in which things get worse because physical decline, especially when it’s so absolute, can feel unbearable.

When she likened her advancing paralysis to being covered in cement over the span of years, it was more than metaphor it was visceral imagery that many with ALS know all too well. Yet even in that weighty honesty, she clung to her spirit of defiance. She declared, with characteristic wit intact, that she’s “not done yet,” humor mortared together with persistence. Viewers witnessed not surrender, but fierce awareness of reality.

Eby’s openness about not feeling gratitude at all stages of her disease disrupts the "heroic patient" storyline the notion that gratitude is necessary or expected as life wanes. Instead, she honored the truth: that in moments of profound agony, despair, and physical loss, gratitude may simply be too heavy. Her honesty, she said, is essential: living with ALS is not always about airbrushed affirmation it is about the jagged, messy, human struggle of decline.

In earlier interviews and posts, Eby had established herself as someone who leaned on humor to process her diagnosis and raise awareness. She called levity her “superpower,” cracking jokes about limping into events and turning a walker into a dance-floor prop. Over the years, she built a reputation for using comedy to demystify ALS and make conversations more accessible. But this latest message steps into deeper, less polished territory the weight of existential reckoning, the toll of physical erosion, and the emotional honesty of hopelessness.

Her followers have watched as she moved from diagnosis in 2022 into more advanced stages, navigating the slippery slope of diminishing function from using a cane, to a wheelchair, and now relying on machines to survive. Yet through it all, she kept creating, connecting, and pushing forward. She established ALStogether, a Slack-based mutual support network for other ALS patients and caregivers. She maintained a career in tech sales as long as possible. And even now, in her “dying diary,” she still fights.

Brooke Eby’s bravery in articulating how she really feels unfunny, ungrateful, despairing makes her voice even more vital. In a digital age quick to showcase strength and resilience, she counters with truth. Her story reminds us that courage isn’t only in positivity; it’s also in the willingness to live honestly within pain. Her diary entry isn’t a defeat; it’s a reclamation of emotional authenticity and a lesson in what real grace looks like.