Throughout her life, there hasn’t been much that has stopped Deanna Wheeler.
After returning from deployment with the Air Force, the 31-year-old mother-of-three embarked on an entirely different and ambitious career as a professional singer and songwriter and, last month she was preparing to embark on her first tour.
But the night before Mother’s Day, driving back to her home in Austin, Texas from a gig in the wee hours of the night, Deanna’s foot started going numb. Then her ankle, her knee and soon, her entire left leg were suddenly useless to her.
By the time she made it home from the harrowing trip – driving only with her left foot for most of it – Deanna could barely walk into her house.
After a bath made matters worse, her children’s babysitter insisted she go to the emergency room.
Within 24 hours of arriving there, Deanna was paralyzed from the neck down.
She was diagnosed with Guillain-Barre syndrome, a rare autoimmune disorder that causes the body to spontaneously attack its own nerves.
But Deanna is determined that whether on foot or the two wheels of her chair, she will return to the stage.
A rare autoimmune disorder paralyzed Deanna Wheeler from the waist down, almost instantly. With months of physical therapy ahead, the veteran and singer-songwriter hopes to once again stand, walk and take the stage again
Deanna (right) was about to start her first tour as a professional singer songwriter while raising three children, Ailee, Reid and Aiden (left to right of rigth) when her paralysis set in
Some conditions that affect the nerves just manifest as numbness in the affected body parts, but that was not the case for Deanna’s Guillan-Barre.
The condition only strikes a few thousand Americans each year and is known for the rapid spread of its symptoms, and Deanna felt every inch of it.
First her right leg and then her left went from feeling like pins and needles, to numbness to feeling like they were ‘in boiling water, just on fire,’ she says.
As was the case for Deanna, an episode of the syndrome typically begins with numbness and tingling, but from there weakness can quickly turn to paralysis and tingling to pain and then a complete lack of feeling.
Once she made it to the hospital, Deanna’s condition deteriorated quickly.
Guillain-Barre is even more bizarre than it is rare. Scientists still do not know what causes it, though it is not uncommon for the disorder to appear after an infection.
The immune system starts out trying to attack pathogenic cells, but somewhere it goes astray, and starts to pick on the coating of nerves instead.
Deanna’s symptoms progressed so quickly that her diaphragm was paralyzed and she had to be put on a ventilator to breath
This coating, called a myelin helps to conduct the electrical signals through which the brain communicates with the body.
As it deteriorates, so does the signal quality, until no information at all is getting a person’s limbs, and, in rare cases, to any part of the body below neck, causing total paralysis, including of the lungs.
Deanna had one of those rare cases of the rare disorder.
‘Within six hours getting there, my oxygen dropped to 70 percent and they had to take me to the ICU because my diaphragm had been paralyzed,’ she recalls.
The singer, who was planning to release the single she’d written for her mother the following day – Mother’s Day – was placed on a ventilator just to keep her breathing.
The mother-of-three couldn’t speak, but silently she was terrified for her children.
Her mother lived in California had looked after her oldest son, nine-year-old Aiden when Deanna had been deployed, but now she was far away from Deanna’s home in Austin.
‘I worried that I had no one for my babies,’ Deanna remembers.
Even though she was hospitalized, Deanna’s song came out, and when she woke up at 10pm on Sunday, her mother was at her bedside.
‘She rescued that whole day because I knew my babies were safe, they were going to be fine, and safe and happy,’ Deanna says.
She was relived to have some certainty about her children. But everything else was up in the air for Deanna as she lay motionlessly battling her mysterious disease.
Deanna’s mother (right) rushed to her bedside from California and was there at on the night of Mother’s Day when Deanna woke up
Five days after her symptoms set in, Deanna’s three children, Aiden (left), Ailee (center) and Reid (right) were able to see her. ‘It was one of the most emotional experiences of my life,’ she says
‘No one really knew what was going on. When would I get to see my kids? Could I still make a living?’
Doctors put Deanna on immune globul, gamma (IgG), an IV medication for about a week. She developed an allergy to the drug and had to be taken off of it, but the IgG still had time to do its job and by the fifth day in the hospital, Deanna was well enough to see her children.
‘That was probably one of the most emotional experiences of my life, how hard the squeezed me and how hard I squeezed them, it was like a commercial,’ she says.
Deanna describes the effects of the IgG as ‘allowing my antibodies to refresh.It flushes them out a little bit so they can reprogram.’
As if it was being rewound, the paralysis left Deanna’s neck and chest and then her arms and feet.
Deanna is taking inspiration for Wonder Woman, and aims to walk again in five months
A veteran of the Air Force, Deanna is no stranger to a challenge, and says her ‘military strength’ is returning to her as she pushes through physical therapy
Though she is a singer-songwriter, Deanna has never been much of a guitar player she decided to use her time in the hospital to get better.
As she strummed during a lesson, her foot started to twitch, the first movement she’d had below her waist since the fateful Saturday night episode.
In that moment, she believed ‘music was going to heal me,’ Deanna says.
And musicians and veterans alike poured out of the woodwork, visiting their fellow artist and service woman in the hospital, playing guitar along with her, even giving her a smaller guitar so she could play more easily from her bed.
Now, two weeks later, Deanna is able to sit up, and she’s getting ‘guns’ from three hours of physical therapy a day, learning to use her wheelchair.
On June 24, Deanna is hosting a benefit concert in her hometown of Austin, Texas, to raise awareness about Guillain-Barre
‘I’m impatient with the therapy,’ she says, eager to be released from the hospital in 16 days, but she has made progress.
When she started therapy, ‘I was such a rag doll, I didn’t know how to control anything. It was kind of an invalid feeling,’ she says.
Deanna’s doctors think she’ll regain the ability to walk, but it could take six months or even a year.
‘It sucks not having my legs and my stage presence,’ Deanna says.
She’s making it a mission to surpass their expectations, however, and can’t wait to ‘run out of here and jump on stage,’ she adds.
Deanna may be confined to a wheel chair for the time being, but that won’t keep her off the stage either.
Fortunately, it’s unlikely she will be wheelchair bound for life, and, once it’s gone, Guillain-Barre tends to stay gone.
Still, the experience has given her new empathy for those who never regain full mobility, but, as she says, that doesn’t mean they should be seen as ‘disabled.’
With the help of Austin-area musicians and veterans, she has organized a benefit concert on June 24 to raise awareness and money for those struck down suddenly by Guillain-Barre like she was. She plans to release her self-titled album that day, tool.
‘I want people to know that you can go through this and still have a career, still have a family, still do anything, because you’re still a person, you’re just in a wheelchair.’