Brooke Eby, a 37-year-old social media influencer, is using her platform to shed light on living with amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease. With over 660,000 followers across various platforms, she has built a supportive community where she openly shares her experiences and insights about the challenges of her condition. In alignment with ALS Awareness Month, Eby has recently resumed her annual tradition of responding to questions from her followers, a practice that helps raise awareness and offers a glimpse into her daily life.
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In a TikTok video posted on May 12, Eby delved into an intriguing topic: her dreams. Despite being paralyzed and predominantly using a wheelchair, Eby revealed that she experiences dreams in which she is capable of walking and running. This inversion of her waking reality poses a curious contradiction for her. “I have dreams where I’m walking or running, but I’m aware that I shouldn’t be,” she explained, adding a layer of complexity as she becomes conscious of her actual limitations. The insights she shares not only highlight her imaginative mind but also reflect a poignant struggle with self-perception and societal perceptions of disability.
Eby’s journey with ALS began at the age of 33 when she received the diagnosis in 2022. Since then, she has faced the reality of living with a disease that slowly robs individuals of their muscle control, leading to progressive paralysis. The Mayo Clinic notes that ALS affects nerve cells in the brain and spinal cord, eventually impacting a patient’s ability to walk, speak, eat, and breathe on their own. For Eby, the challenges of her condition are starkly real, and her thoughtful engagement with her audience serves as a means to foster understanding and empathy.
During her online interactions, Eby candidly addressed her emotional state as well. In a TikTok shared on May 3, she conveyed how she physically feels, describing herself as a “talking corpse” and reflecting on how drastically her life has changed. “I feel like I went from being the first person on the dance floor to, like, a mean, old wench,” she remarked, highlighting the dramatic shift in her physical capabilities and overall lifestyle. This brutally honest depiction resonates with many who follow her, as it embraces the difficult realities faced by those living with debilitating conditions.
In her discussions, Eby also recognised the juxtaposition between maintaining a positive front and the underlying struggles that accompany her illness. “I can’t emphasize enough, being funny and being happy are two very different things,” she told her followers. This distinction is crucial, as it challenges the common misconceptions about individuals with chronic illnesses always presenting a brave face or being perpetually cheerful. Her transparency about the emotional toll of ALS serves not only to educate but also to connect with those who might share similar struggles.
Moreover, Eby’s openness about her dreams provides a glimpse into how her psyche is coping with the harsh realities of her condition. She noted that her dreams are often vivid, which she speculated might be influenced by the medications she takes to aid her sleep. The blend of reality and surrealism found within her dream life adds depth to her narrative, presenting a contrast between the limitations she faces when awake and the freedom she experiences during sleep.
As more individuals become aware of Amyotrophic Lateral Sclerosis, initiatives like Eby’s TikTok series play a vital role in illuminating the challenges of living with such a condition. Through her posts, she not only raises awareness but also humanises the illness, fostering a sense of community and support among her followers. Each video creates an opportunity for dialogue, allowing people to engage with the realities of ALS and advocating for greater understanding and compassion.
In reflecting upon her journey, Eby’s message is clear: the battle against ALS is not just physical but emotional as well. Her commitment to sharing her story, despite its difficulties, serves as a source of inspiration to many. By fostering a space for discussion around ALS and addressing the nuances of living with a life-altering condition, Eby is not simply bringing awareness; she is empowering others to engage with the complexities of disability in a world that often overlooks such narratives.