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

• Actor and former college athlete Cody Highvie was paralyzed for weeks at just 26 years old after developing a rare disease.

• Hively told Insider that doctors initially misdiagnosed his Guillain-Barré syndrome as a herniated disc.

• Hively was conscious during the 3.5 weeks he was on a ventilator, but he never doubted he would survive.

Actor and writer, Cody Hively moved to Los Angeles in April 2021, finally ready for his big break after spending much of 2020 at his parents’ 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’s 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 couldn’t speak or swallow and needed nurses to dab his eyes because he couldn’t blink.

Hively contracted the rare disease Guillain-Barré syndrome, which causes the body’s immune system to attack nerves and affects only a few thousand Americans a year. The cause of Guillain-Barré is not completely known, although many patients develop the condition after contracting an infection, according to the Mayo Clinic. Hively said he developed Guillain-Barré weeks after testing positive for COVID-19.

After receiving two misdiagnoses, experiencing complete paralysis, a severe case of pneumonia while on a ventilator, and spending weeks learning how to walk again, Hively told Insider that she’s sharing her experience to help others with Guillain-Barré. One of his TikTok videos about his trip has been viewed 4 million times.

“It’s easy to be angry. I’m angry that a year of my twenties was taken away from me,” Hively said in a separate caption to a TikTok video. “But I remind myself to be grateful for this life and the journey I’ve been on, because the joy of taking each breath should not be taken for granted.”

The story continues

Doctors initially misdiagnosed Cody High with a herniated disc. He was paralyzed within a week.

Like most people who get Guillain-Barré, Hively told Insider that his symptoms began in January 2022 as numbness and weakness in his legs, which he attributed to “overexertion” after intense workouts at the gym.

But his symptoms progressed quickly: A week after squatting 350 pounds, Hively found he was having trouble doing simple things like standing up after sitting down. He also experienced numbness around his shoulders, leaving him unable to raise his arms and eventually losing all feeling in his abdomen.

In February 2022, Hively had a gig working at a private event. He traveled from LA to Thomasville, a small town in Georgia, where his symptoms continued to progress.

In Thomasville, Hively said he saw two separate doctors — one in the ER and one in the ER — on Feb. 3 and 4 about his rapidly progressing numbness. They both attributed the symptoms to a herniated disc 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 disc, and I’m like, that’s not it,” Hively said. “It doesn’t explain why my hands are tingling, why I’m getting tingling in my back and stomach.”

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

On Feb. 6, an emergency room 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 was unable to perform basic functions. Doctors inserted a feeding tube through his nose and mechanically pumped air into his lungs via a ventilator.

Hively stayed paralyzed in the intensive care unit until March 17.

Hively had to relearn how to walk, but has since made an almost full recovery.

Traveling with the fan came with its obstacles.

Hively remained conscious while on the ventilator, a painful ordeal that was eased slightly with oxycodone and muscle relaxants. “I was fully conscious, not in a coma,” he said. “I was locked in my own body. The nurses had to come in and try to guess what I needed.’

Hively’s eyes could not blink to block the bacteria, so they became infected. He developed severe pneumonia caused by aspirating food while on a ventilator.

Still, he said he had “no doubt” he would survive, even through the hardest days on the ventilator. Hively said his doctors are optimistic he will recover because most people with Guillain-Barré recover at least partially after months or years, according to the Centers for Disease Control and Prevention, especially the young and healthy.

But support from his friends, family and another Guillain-Barre survivor he met through mutual friends helped him stay mentally resilient while he was physically immobilized. A GoFundMe started by his friend gave his family enough money to take time off work to be with him.

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

Now, a year after the paralysis, Hively plays indoor soccer and snowboards. He still goes to physical therapy to help with his balance and speech therapy, and hopes to regain full facial movement so he can return to acting.

“I think life is too short to take it too seriously,” Heavey said. “It’s not about the actions that happened to you, it’s about your reactions to the actions.”

Read the original Insider article