Brooke Eby Says She Feels Like a ‘Talking Corpse’ amid ‘Maddening’ ALS Progression

**Brooke Eby Shares Insights on Living with ALS During Awareness Month**

In recognition of May as ALS Awareness Month, Brooke Eby, a 37-year-old content creator, has been candidly sharing her experiences and feelings surrounding her diagnosis of amyotrophic lateral sclerosis (ALS). With an engaging presence on social media, she has dedicated this month to addressing viewers’ queries about the realities of living with a terminal illness.

In a video shared on May 3, Eby responded to a comment concerning her physical and emotional state. Describing her condition, she remarked, “Physically, I feel like a talking corpse.” Eby likened her current existence to that of someone who has lost their vitality, stating she has transitioned from an active person who loved dancing to feeling constantly irritable and trapped in her own body, saying, “I went from being the first person on the dance floor to, like, mean, old wench.”

Despite Eby’s well-known sense of humour, she was quick to clarify that this should not be interpreted as an indication of her emotional well-being. In her interactions with her audience of 290,000 TikTok followers, she explained, “I can’t emphasize enough, being funny and being happy are two very different things. I actually really dislike what this disease has done to me emotionally.”

Amyotrophic lateral sclerosis is a progressive neurodegenerative disease that primarily affects motor neurons in the brain and spinal cord. As it advances, patients inevitably lose the ability to perform basic functions, including speaking, eating, walking, and breathing independently. This brutal reality has not escaped Eby, who expressed feelings of frustration at her increasing dependence on caregivers.

Eby elaborated on this matter, asking her viewers to imagine waking up and being unable to manage even the simplest tasks independently. “You wake up in the morning by opening your eyes, and that’s the very last thing you can do without needing to ask for help,” she explained. Simple tasks, such as sitting up or brushing teeth, have become reliant on others, compounding the struggle with her condition.

The touching video highlighted the emotional toll of ALS, particularly for someone like Eby, who values her independence. “Physical touch is not my love language,” she shared, noting the discomfort that arises from needing to be handled constantly by others just to maintain proper positioning.

As she reflected on her current life circumstances, Eby expressed a deep sense of loss for her previous life. “I just miss my old life,” she said wistfully. Yet she also mentioned the importance of finding purpose where she is, stating, “But at the same time, it’s like bloom where you’re planted. So I’m just trying to keep as much purpose in my life.”

This kind of openness about personal challenges is not new for Eby. Last year, following surgery to insert a feeding tube, she candidly shared her struggles in a video labelled “my dying diary.” In that post, she expressed her frustration at losing control over her body, explaining, “I absolutely hate being paralyzed. I hate it so much,” and compared her gradual loss of mobility to being trapped in cement.

Eby described the process as feeling akin to a slow encasement, with the sensation of confinement spreading over her limbs and body over several years. “It feels like someone started sneaking into my room in the middle of the night seven years ago,” she said, illustrating her gradual decline in a powerful metaphor.

In her discussions, Eby has showcased not only the physical manifestations of ALS but also the heavy mental burden that accompanies such a diagnosis. “I think I’m just sort of slowly coming to terms with the fact that I am in the later stages of this disease,” she admitted, a poignant reflection on her acceptance of her condition.

Throughout ALS Awareness Month, Eby’s heartfelt messages encourage understanding and empathy towards those battling similar challenges. She aims not only to raise awareness but also to foster connections and dispel misconceptions surrounding this devastating disease. As her story continues to resonate with many, her transparent approach serves as a reminder of the importance of kindness and humour even amidst life-altering circumstances.