Erin Taylor, now 26, had just finished university and was building a future as a botanist when her life was turned upside down by a mystery disease that left her limbs like ‘strangers’
Erin was diagnosed at just 23(Image: Jam Press/@unsteadyandready)
A young graduate with her dream career ahead of her has been left trapped in a body that won’t move after being struck by a devastating disease. Erin Taylor, now 26, had just finished university and was building a future as a botanist when her life was turned upside down.
Within months, she went from hiking and fieldwork to needing round-the-clock care. Erin was diagnosed with amyotrophic lateral sclerosis (ALS) at just 23 – a rare and fatal condition that slowly shuts down the body.
Now wheelchair-bound and unable to live independently, she says her limbs feel like “strangers”. But despite being given just a few years to live, Erin is determined to make every moment count.
“I first started showing symptoms that I could pinpoint probably at aged 22,” Erin, from the US, told Creatorzine. “It’s hard to tell if I could have had ALS prior to that.
“I live with my mom, she stepped up to become my caregiver and I’m currently on disability due to my ALS. Prior to ALS I had just graduated from Utah Valley University and was doing environmental field work in the Great Basin as I built my portfolio towards becoming a botanist.
“My mom was with me when I was diagnosed and I’m glad she was because I didn’t know what ALS was. I just looked at her crying and asked her if I was going to die.
“I mean, I guess I could have figured that out on my own by just looking at her face. I didn’t tell anyone immediately, I guess I was in denial.
“I also didn’t want to see their faces fall and feel sad.”
Erin’s world changed overnight when her mum moved her back home.
She said: “I was living in a different state and my mom basically just dropped her own life, came up, packed up my apartment and flew my back home to live with her.
“That was a huge life change for me. I had been on my own since I was 17 and having to leave that life and the friends I made behind was gut wrenching.”
Her family rallied around her. She said: “My whole family sort of shored up, gathered their strength and collectively resolved to help me how they could.
“My cousins bring over food, my uncles help my mom maintain her job, they help with fundraisers etc. I did end up telling my grandfather, I felt like he needed and deserved to hear it from me.
“His face fell so far when I told him, I’ve never seen him look so defeated and sad and that tore me apart.”
Erin had never even heard of ALS before her diagnosis. She said: “The moment I heard it was a big question mark.
“What the heck is ALS? I had never heard of it. And its weird because I was actually diagnosed with ALS almost immediately, I had no inkling that my little hand weakness and twitching and voice issues were fatal.”
Now, the disease has taken almost full control of her body. She said: “Except my muscles are dying one by one and so now I’m at the point where anything I try to do with my arms, hands, or legs just doesn’t happen.
“I look down at my limbs like they are strangers to me. My arms just lay there.”
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