Brooke Eby by no means meant to turn out to be an influencer. The truth is, she needed to watch a YouTube video on the best way to create a TikTok earlier than making her first put up. However she by no means meant to be recognized with a terminal sickness at 33, both.
Eby, now 36 (“Plus one month and at some point,” she says, ever-cognizant of the time fuse hooked up to her nervous system), was recognized with ALS, also referred to as Lou Gehrig’s, in March 2022. Generally and falsely related to an older inhabitants, the progressive illness that impacts muscle motion — and shot to fame in 2014 partially by the viral Ice Bucket Challenge — comes with a life expectancy of two to 5 years.
“I’d debate the phrase influencer,” Eby tells Scary Mommy of her social presence on platforms Instagram and TikTok, the place she has amassed almost 400,000 followers underneath the deal with @LimpBroozkit. “I am simply sharing my story, and if that influences folks to care, certain, I will take that title.”
In 2019, Eby, then working in tech gross sales for SalesForce in San Francisco, seen a persistent tightness in her left calf muscle. She remembers not having the ability to sustain with mates whereas crossing the road and creating a pronounced limp. Eby says her sister, a physician, advised her she seen “foot drop,” a situation that makes it troublesome to elevate the entrance of your foot, and prompt it could be a pinched nerve. Regardless of working “each take a look at you possibly can consider” amongst specialty docs up and down the East Coast, it took docs 4 years to provide Eby a definitive prognosis.
“I laid in mattress for 2 months consuming M&Ms,” she says, including the official prognosis had a numbing impact. “I really feel like I used to be like Teflon. Nobody may say something to me that will sink in, as a result of I wasn’t even in struggle or flight — I used to be in freeze. Nobody may even ask me a query with out me getting upset.”
A turning level for Eby got here at a good friend’s wedding ceremony two months later the place she arrived utilizing the identical walker because the bride’s grandma. “I wished to go away instantly,” Eby says, however she knew the reality. “I may both lean in and have enjoyable or spend no matter time I’ve left being unhappy.”
And lean in, she has. After the marriage, with a little bit coaxing from mates, Eby started sharing her life with a terminal prognosis on TikTok in the summertime of 2022 — however not within the doom and gloom means you would possibly count on from a lady whose life had instantly turn out to be an hourglass. As a substitute, Eby determined to make use of humor not simply as a coping instrument but in addition to unfold consciousness.
“Telling first dates that I will be utilizing a cane,” Eby titled one of her first viral videos that has since racked up almost two million views and options screenshots of textual content responses she received from future suitors.
“Order one other cane trigger, woman, you bought me trippin,” wrote one. One other responded, “You may fall for me earlier than we even get dinner.” The video was so widespread Eby made a second one that acquired much more views.
However Eby was simply getting began. TikTok turned her each day diary the place, she says, she was simply attempting to share her life — and nothing was off limits. In between sharing her day-to-day life, together with first dates and make-up merchandise, she was additionally answering questions like “I believed ALS was for outdated folks?” and “What is going to you do if ALS comes on your voice?” Eby additionally shared movies the place she sampled trial medicine, examined out new mobility gadgets, and detailed what it takes to discover a dependable caregiver.
“A part of deciding to share was simply making a useful resource I want I had had once I was recognized,” Eby says.
As months handed, Eby’s following grew… and her illness progressed.
“I do not even know that woman,” Eby says, reflecting on how a lot has modified since she started documenting her life with ALS on-line. “Bodily, I simply was doing a lot extra.”
Eby’s group has watched as a cane turned to a wheelchair, and dwelling alone developed into transferring again in along with her dad and mom. Lately, she shared that she is slowly shedding the usage of her palms, however two issues have remained the identical: her humorousness and dedication to alter the way in which folks take into consideration ALS.
Since her prognosis, Eby has turn out to be a spokesperson for a number of ALS organizations, together with the ALS Affiliation and the MDA, was the keynote speaker at Salesforce’s annual convention, served as a affected person advocate for the medical platform Roon, testified earlier than the FDA in assist of a brand new drug that might sluggish the development of ALS signs (“It was denied, although,” she says), and developed ALStogether, a centralized hub of assets for the ALS group that did not beforehand exist. Oh, and he or she’s raised greater than $1,000,000 for ALS analysis by means of on-line fundraising and group walks. No massive deal.
Although maybe the most important influence, Eby says, has been having the ability to change the dialog surrounding this illness, notably for many who suppose it could possibly solely influence “outdated white males.”
“I used to be a kind of folks,” Eby admits. “Individuals have mentioned to me, ‘You have turn out to be the face of ALS!’ However there is no such thing as a face of ALS, as a result of it could possibly hit anybody at any time.”
2025 marks three years since Eby was recognized.
“My plan is to put up till the tip, so long as I am able to it,” Eby says of her burgeoning social presence. Although life like about her destiny, Eby stays hopeful that in 10 years, she and I can reminisce on this interview along with her signature trait: laughter.
“I plan on you and saying, ‘Wow, are you able to imagine ALS wasn’t curable again then?'”
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