It started with a weakness in the hands. At the time, Erin Taylor, then a college student in her early 20s, blamed the seemingly harmless, one-off ailment on studying too much and skipping her usual workouts.
But several months later, she began to notice that her voice sounded different. Her entire body felt stiff and her muscles had weakened, causing her walking to slow down. Still, she blamed the changes on her lack of exercise.
‘I just thought it was weakness, so I joined a CrossFit gym to get back into condition,’ she told the Daily Mail. ‘I could never figure out why I wasn’t getting stronger. Everything I tried just failed… and my walking slowed way down; one day I thought to myself, “I wonder if I can still run,” so I tried and my body wouldn’t do it.’
In 2023, about a year after her initial symptoms, Taylor finally went to the doctor at her mother’s urging. Testing showed she had sporadic limb-onset ALS, a fatal neurodegenerative disease affecting around 35,000 Americans, including Grey’s Anatomy and Euphoria actor Eric Dane, who died in February at 53, just one year after being diagnosed.
‘It’s weird because I was actually diagnosed with ALS almost immediately,’ Taylor, now 26, said. ‘I had no inkling that my little hand weakness and twitching and voice issues were fatal.’
Despite her devasting diagnosis, Taylor was able to graduate college. But soon after, her condition worsened.
Taylor was 23 years old and just out of school when she became trapped in her own body. On top of her slow decline in mobility, she gradually lost her ability to communicate.
‘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,’ she said. ‘I look down at my limbs like they are strangers to me.’
Erin Taylor was diagnosed with ALS, also known as Lou Gehrig’s disease, in 2023. The fatal neurodegenerative disease affects about 35,000 Americans, including actor Eric Dane, who died at 53 in February
ALS – also known as Lou Gehrig’s disease – causes nerve cells that connect the brain and muscles to slowly die and stop working.
The brain can no longer send signals to muscles to move, leading to muscle wasting, paralysis and the loss of speech, swallowing and breathing.
Now, a once-aspiring botanist, Taylor has gone from hiking and doing fieldwork to being confined to a wheelchair, unable to feed or bathe herself. She is completely reliant on her mother.
Doctors have given her a life expectancy of just 28 years old.
‘The doctors don’t really know [how long I’ll live],’ she said, adding that her prognosis is based on ‘an average of how long people generally live.’
‘I was told that young people like myself tend to live longer, and I hope that’s the case,’ Taylor continued.
‘But I know that I’m further progressed than a lot of other people, and I’m younger than all of them.’
About 90 percent of ALS cases are sporadic, meaning the patient has no family history of the disease. Only five to ten percent of cases are hereditary.
Taylor’s was one of those sporadic cases. She had no prior reference for the disease.
‘The moment I heard it was a big question mark,’ she said. ‘What the heck is ALS? I had never heard of it.’
The aspiring botanist went from hiking and doing fieldwork to a wheelchair, unable to feed or bathe herself. She is fully dependent on her mother
Taylor had no inkling that her hand weakness, twitching and voice issues were fatal. Now, her muscles are dying one by one and her limbs feel like ‘strangers’
By just a few months post-graduation, Taylor’s condition had worsened to the point that she could no longer hold her job as a field botanist – she was unable to lift and carry heavy loads like she could when she was first hired.
She then had to move back home with her mother. Having lived on her own since 17, Taylor struggled to give up her independence. She described leaving her friends behind as ‘gut-wrenching.’
‘Someone has to brush my teeth, prepare food and feed me,’ she said. ‘I also have to be showered and dressed.
‘It’s insanely frustrating to be reliant on someone else to remove an eyelash from my eye, or find a hair that’s fallen across my face.’
Of all her hardships, she misses her ability to speak the most – something she now does with eye-movement detection by a computer.
‘No one realizes how powerful the ability to communicate is until it’s gone,’ Taylor said. ‘I’m at the point where I can’t really convey my thoughts out loud anymore. If I do speak, I choose very simple words to say, and most people ask me to repeat myself.’
Instead, Taylor uses eye-gaze technology, a camera-based system that tracks where a person is looking on a screen.
By staring at a specific letter, word or icon for a fraction of a second, the person can ‘type’ out sentences, speak through a computerized voice, control a wheelchair, turn on lights or browse the internet.
She also uses a personal AI avatar – a digital, realistic likeness of the person on a screen that is powered by artificial intelligence.
Last year, Dane revealed he had dismissed an early symptom of ALS – weakness in his right thumb. ‘I started experiencing weakness in my right hand and didn’t think anything of it,’ he said on Good Morning America
Taylor uses an AI avatar that looks and sounds like her. Using eye-gaze to type, the avatar speaks in her original voice with expressions and lip-sync, allowing emotional, human communication rather than a robotic voice
Taylor types words using eye-gaze and the avatar that looks like her speaks those words out loud in a voice that sounds like her original voice – before ALS affected her speech.
The avatar can also show facial expressions, like a smile or a sad look, and move its lips in sync with the words.
This allows Taylor to communicate with emotion and personality, rather than sounding like a generic robot.
‘Strangers think I’m illiterate or mentally handicapped, and nothing is further from the truth,’ Taylor said. ‘I’m just as intelligent as I’ve always been, and I’m not in any pain. But I’m locked away in this body that is failing me because of this disease.’
Driven to spread awareness about ALS, Taylor now devotes her time online to educating people through her Instagram account, @unsteadyandready.
Her efforts focus on pushing assistive technology developers to make a scalable, barrier-free worldwide solution for those who can no longer speak.
‘Not only am I an advocate, and use [the] technology to give speeches and interviews,’ she said, ‘but I’ve been in a race car, I’ve been skydiving and paragliding, I’ve traveled extensively and hiked – all after I was diagnosed.
‘If by posting my story I make even the tiniest dent in this disease by either reach or inspiration, I will feel like my life wasn’t wasted.’
