Working as a telecom construction project manager on a Navajo reservation in Arizona, Steve Wenger was reluctant to get the COVID-19 vaccine. But the reservation was hit hard by COVID, and its residents put a lot of pressure on him to get the jab.
So, in May 2021, Wenger, now 56, got the Johnson & Johnson COVID-19 vaccine. Within 10 days he had a severe reaction. His legs felt very heavy, and he started having trouble walking. Leaving a restaurant the next day, he made a small turn and lost his balance, nearly falling into some diners. By June 14 he couldn’t stand anymore and went to the hospital.
“I crawled through the ER entrance,” Steve said. He ended up spending over three months in both a local hospital and the Mayo Clinic.
While in the hospital, on oxygen, and unable to care for himself, Steve had a transformative experience. Lying in bed, he noticed a woman in a hooded robe standing next to his bed, bathed in a bright white light. He immediately hit the nurse’s Call button.
“You’ve got to get me out of this room,” Steve told the nurse who answered. “I think it’s haunted—I just saw a ghost!” He wondered if perhaps someone who had died in the hospital had been in his room. The nurse laughed it off and walked out.
Yet Steve was not on narcotics, so he began to think he’d seen an angel. After describing the experience to a close friend, the friend sent Steve a picture of the Virgin Mary, resplendent in a hooded white robe with gold sash.
“That was her!” Steve immediately replied. Thanks to that, he now believes in God and an afterlife.
But the heavenly visit didn’t happen out of the blue. Steve’s in-laws are devout Lutherans who’d assembled a chain of people praying for his recovery.
During his months in the hospital his symptoms worsened until he became a quadriplegic, a condition which lasted two months. Doctors removed a piece of nerve from his foot and found CIDP, or chronic inflammatory demyelinating polyradiculoneuropathy. Unfortunately, Steve says, it was the most severe type of the disease—Guillain-Barré Syndrome, a disorder in which the body’s immune system attacks the body’s nerves and which can eventually paralyze a person.
Steve was prescribed Rituximab, a cancer drug used to treat chronic lymphocytic leukemia and some types of non-Hodgkin’s lymphoma. “That’s what finally turned it around for me,” he said.
These days he also gets intravenous immune globulin (IVIG) treatments twice a month, which provides him with antibodies to fight infections. “I was lucky—I had an actual diagnosis,” Steve said, noting that others who’ve had an adverse COVID-19 vaccine reaction haven’t been so fortunate. “It’s the way your body reacts to the vaccine. Your immune system goes wild and attacks your nervous system.”
He also feels fortunate to have a good support system of family, friends, and those offering intercessory prayers. Not least of these is his 34-year-old daughter, a registered nurse and personal trainer who has spent a lot of time caring for him.
Going back to work full-time is impossible. While he used to make a six-figure living as a construction project manager, nowadays he can work no more than 14 hours a week at a local hardware store in Rogers, Minnesota, where he and his wife moved in order to save money. “I was lucky I got Social Security and didn’t have to wait years to get it,” he said.
From Injured to Advocate
Steve is now an advocate for COVID-19 vaccine-injured people. He blogged his experiences throughout his hospital stay, using Facebook Live when he couldn’t type, switching between accounts because he kept getting thrown into “Facebook jail.” He follows a lot of vax-injured folks on social media and is involved in React19, a vax-injured advocacy group.
“I always mention these people when I’m talking to God. Some have gotten better,” he said.
Though he’s pushed aside his wheelchair and walker and can now walk with just a cane, he has no feeling in his hands, or in his legs and feet from the knees down. Still, he feels fortunate, and it’s fueled his activism.
“I think I was meant to take on this challenge, to get the vaccine-injured the help they deserve. It’s become my life…. It’s humbling. It’s pretty awesome,” he said, sounding a bit surprised at his newfound role.
Steve has faced the same dilemma of other vaccine-injured folks who cannot get medical folks to name that unspeakable connection. “It’s still very difficult to get doctors to acknowledge. My doctors at Mayo were acknowledging it but wouldn’t put it in the medical record, but finally did so in March,” he said. “For me to put that in writing would be career suicide,” Steve said the doctor told him.
“The doctors need to acknowledge these vaccine-injured patients. Their go-to diagnosis is ‘It’s anxiety,’” Steve said.
Now he’s working with politicians, such as Arizona Congresswoman Debbie Lesko, to get COVID-19 vaccine-injured people moved from the Countermeasures Injury Compensation Program (CICP) to the National Vaccine Injury Compensation Program (VICP), as Steve says CICP doesn’t compensate COVID-19 vax-injured folks. Through his advocacy and Lesko’s help, two bills were created: one which would move COVID-19 vax-injured folks to VICP, and a second bill that would allow COVID-19 vax-injured folks to appeal denial of benefits from CICP. Lesko also organized a Capitol Hill roundtable event set for September, which medical experts, doctors, government officials, vax-injured folks, and the media will attend.
Getting through to Lesko didn’t happen overnight—it took him a few months of trying before he got his first response. He uses a similar ploy whenever he tries to reach an official. “I tell them, ‘I want to talk to you as a vaccine-injured person. You might call me pro-vaccine because I got the vaccine. I am a result of the vaccine,” he said. “I’m one of COVID’s dirty little secrets—nobody wants to talk about it. I try my best to be a thorn in their sides and blow up their phones until they acknowledge.”
He advises others to call their elected officials. “Believe it or not, they work for you. Call them and don’t give up. Persistence pays off and eventually someone will answer. But be prepared to have the door slammed in your face,” Steve said.
Ironically, as has been the case with other COVID vax-injured people, Steve got COVID-19 after getting the vaccine and adverse reaction. He has the PCR test to prove it.
Steve is physically more active than he was early in his recovery, but he can’t walk any distance. He and his wife used to regularly hike, but now his ankles give out. “I can’t run. We used to play pickleball, but no more,” Steve said.
Having lost more than 70 pounds while hospitalized, he’s still rebuilding his muscles. He’ll have a nerve test in October that could determine if he’s already at his new normal.
Despite these difficulties, he has goals for his advocacy. “Slamming doctors talking about this has got to stop. Doctors are literally taking their careers into their own hands if they speak about this,” he said.
Still, he is counting his blessings.
“The whole experience changed me. I think it made me a better person. For three months, I was totally dependent on others,” Steve said. His newfound belief has helped. “It absolutely has made me feel better. I know when I was ill tons of people were praying for me,” Steve said.
Image Credit: Steve Wenger
Editor’s Note: Have a vaccine-related story that you would like to share? Email our editors at [email protected] with your contact information and a brief description of your experience to help our editors with the selection process.4 comments