NEED TO KNOW
Brooke Eby continues to keep up her transparency as her ALS progresses into what she’s considering the “later stages” of the disease.
On Tuesday, Aug. 12, the influencer opened up to her 247,000 TikTok followers with a video update she captioned “my dying diary.” Eby — who uses a wheelchair and recently had a feeding tube put in — began the video by discussing the experience of losing her body functionality.
“I absolutely hate being paralyzed. I hate it so much,” the 36-year-old said. “It feels like someone started sneaking into my room in the middle of the night seven years ago, and first they just poured cement over one of my feet, and a few years later, they poured it over the other foot, and then in the last year, they’ve poured it over my entire body.”
Eby noted that she’s “pretty much physically uncomfortable most of the time,” between her constant connection to a breathing machine and her inability to use most of her body. Currently, she can still speak, make facial expressions and move a couple of her fingers on her own.
“I think I’m just sort of slowly coming to terms with the fact that I am in the later stages of this disease,” the content creator admitted.
Amyotrophic lateral sclerosis (ALS) is a rare degenerative disease that causes progressive paralysis of the muscles. According to the Mayo Clinic, since the disease affects the nerve cells in the brain and spine that control muscle movement, patients slowly lose their ability to speak, eat, walk and breathe independently.
Courtesy of Brooke Eby
ALS — also known as Lou Gehrig’s Disease — has no known cure. The life expectancy is usually between three to five years after diagnosis, according to the Muscular Dystrophy Association, though some patients can live decades.
In her recent video, Eby said she still feels like herself despite her advanced condition, “desperately dancing, trying to get out” of the “cement.” Plus, she added a tongue-in-cheek remark about how she’s “not done yet” since her most reflective instincts haven’t quite kicked in yet.
“I don’t feel grateful for s— right now. I feel like you always hear people at the last days of their lives, ‘Oh, I lived a great life,'” she explained in her TikTok. She did advise her followers to “be on guard for when I start acting real grateful: Code red.”
Eby continued to share how she usually hopes for a “plateau” in her progression every night before she goes to sleep, but it’s becoming increasingly difficult to continue in her current state.
“I mean, I don’t want to croak tomorrow, but I just can’t picture living like this, knowing it’s only gonna get worse, most likely for years and years,” she said. “That just sounds impossible.”
