I went from squatting 350 pounds to completely paralyzed at 26 in a matter of weeks. Doctors told me it was a herniated disk, but it was Guillain-Barré.

• Actor and former college athlete Cody Hively became paralyzed for weeks at just 26 after developing a rare disorder.
• Hively told Insider doctors initially misdiagnosed his Guillain-Barré syndrome as a herniated disk.  
• Hively was conscious during the 3.5 weeks he was on the ventilator, but never doubted he'd survive.

An actor and writer, Cody Hively moved to Los Angeles in April 2021, finally ready for his big break after spending much of 2020 cooped up at his parent's house in West Virginia.

The then-26-year-old hired an agent and enrolled in acting classes. A former college decathlete at West Virginia Wesleyan College, Hively told Insider he was in the "best shape of his life," squatting 350 pounds. 

Less than a year later, Hively would be completely paralyzed. He spent nearly a month on a ventilator in 2022, fully conscious but unable to breathe on his own. He could not speak or swallow, and needed nurses to anoint his eyes because he couldn't blink.

Hively had contracted the rare disease Guillain-Barré syndrome, which causes the body's immune system to attack nerves and impacts only a few thousand Americans per year. The cause of Guillain-Barré isn't fully known, though many patients develop the disease after contracting an infection, per Mayo Clinic. Hively said he developed Guillain-Barré weeks after testing positive for COVID-19. 

After receiving two misdiagnoses, experiencing complete paralysis, suffering a severe case of pneumonia when on the ventilator, and spending weeks learning how to walk again, Hively told Insider he's sharing his experience to help others with Guillain-Barré. One of his TikTok videos about his journey has been viewed 4 million times.

"It's easy to be mad. Mad that a year of my twenties was taken from me," Hively said in a separate TikTok video caption. "But I remind myself to be thankful for this life, and the journey I've been on, because it's the joy of taking each breath that we shouldn't take for granted."

Doctors initially misdiagnosed Cody Hively with a herniated disk. He was paralyzed within a week.

Like most people who contract Guillain-Barré, Hively told Insider his symptoms started in January 2022 as tingling and weakness in his legs, which he attributed to being "overwhelmed" after intense workouts at the gym. 

But his symptoms progressed rapidly: a week after squatting 350 pounds, Hively found himself having trouble doing simple things like getting back up after sitting down. He also became numb around his shoulders, which left him unable to lift his arms, and eventually lost all feeling in his abdomen. 

In February 2022, Hively got a gig working a private event. He traveled from LA to Thomasville, a small town in Georgia, where his symptoms kept progressing. 

In Thomasville, Hively said he saw two separate doctors — one in urgent care and the other in the emergency room — on February 3rd and 4th about his rapidly progressing numbness. Both attributed the symptoms to a herniated disk, and told him to wait a week until he got back to LA so he could see a neurologist. 

"They just keep saying it's a herniated disk, and I was like, this is not that," Hively said. "It doesn't explain why my hands are tingly, why I'm starting to get numb around my back and stomach area."

His mother, a respiratory therapist, urged him not to wait, and to come to a hospital close to her. Two days later, he flew to Columbus to check into the Ohio State University Wexner Medical Center. At that point, Hively could barely walk, and required wheelchair assistance at the airport to get on and off the plane.

On February 6, an ER doctor at OSU finally diagnosed Hively with Guillain-Barré and he was admitted to the intensive care unit. Within days, Hively's paralysis progressed to the point where he couldn't perform basic functions. Doctors put a feeding tube through his nose, and mechanically pumped air into his lungs via a ventilator. 

Hively remained paralyzed in the ICU until March 17. 

Hively needed to re-learn how to walk, but he's since made an almost total recovery. 

The journey on the ventilator came with its own obstacles.

Hively remained conscious while on the ventilator, a painful ordeal that was only mildly helped with oxycodone and muscle relaxers. "I was fully conscious, not in a coma," he said. "I was locked in my own body. Nurses had to come in and try to guess what I needed."

Hively's eyes couldn't blink to block out bacteria, so they became infected. He developed severe pneumonia, caused by aspirating food while on the ventilator. 

Yet he said he "had no doubt" that he'd survive, even during the hardest days on the ventilator. Hively said his doctors were optimistic he'd make a recovery, since most people with Guillain-Barré at least partially recover after months or years, according to the Centers for Disease Control and Prevention, especially the young and healthy.

But the support from his friends, family, and another Guillain-Barré survivor he met through mutual friends helped him stay mentally resilient while he was physically immobile. A GoFundMe started by his friend gave his family enough money so that they could take time off work to be by his side.

With the help of an immunosuppressant, Hively began breathing on his own again in March 2022. He then entered in-patient rehab, where he spent 41 days re-learning how to walk and use his hands.

Now, a year after paralysis, Hively is playing indoor soccer and snowboarding. He still goes to physical therapy to help with his balance and speech therapy, and he's hoping to get full facial movement back so he can get back to acting.

"I think life is too short to take it too serious," Hivey said. "It's not about the actions that happened to you about your reactions to the actions."