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“My heart was breaking to watch so many people suffering just to get information and help and I could not stand by and continue watching them go through this,” said Catherine “Cat” Parker, who in April 2021, was injured by Johnson & Johnson’s (J&J) COVID-19 vaccine.
Within two weeks, the group attracted 200 members from all over the world “with stories that are heartbreaking, but also [inspire] resiliency to keep going through this,” Parker said.
The Defender interviewed three members of the group. Here are their stories.
Donna Zuk Adley: ‘I feel like a voodoo doll where someone keeps taking turns stabbing me in my different body systems’
Donna Zuk Adley, 64, a nurse from Connecticut, is co-administrator of the Vaccine Injury/Side Effects Support Group.
Adley holds degrees in criminal justice and legal studies and has a 33-year career in nursing.
She said she was reluctant to get the COVID-19 vaccine from the get-go — in part because she had “two previous reactions to vaccines, one of which [tetanus] left me with a permanent partial disability.” She was diagnosed with fibromyalgia after the tetanus shot.
“I dragged my heels for nine months because I did not want to get the vaccine,” Adley told The Defender.
“I had restricted my lifestyle, and did all the protocols to avoid COVID,” she said. “I had been working on a COVID floor with up to 32 COVID patients, and never got COVID.”
But after Connecticut Gov. Ned Lamont in August 2021 mandated all workers in a broadly defined list of medical and long-term care facilities get vaccinated, Adley gave in and got her first dose of the Moderna COVID-19 vaccine, on Aug. 11, 2021, and her second dose on Sept. 17, 2021.
She developed reactions soon after receiving both doses of the vaccine:
“After the first Moderna [dose], I had severe lower back pain that felt like shattered glass. I did not realize at the time that many have this symptom after the vaccines.
“[On] September 17, eight hours after my second Moderna [dose], I began to get the initial symptoms that I had expected (fever, muscle aches), [but] I felt very strange and weak, as if I had a mono relapse, which I hadn’t had in over a decade.”
Her symptoms worsened. According to Adley:
“Suddenly I began to have lapses in memory, first slightly, then it got worse. I realized that I couldn’t see small print. I have many reading glasses, and I tried five or six pairs before I realized I had blurred vision. This blurred vision was constant for four months, both near and far vision, and far vision [is] blurry intermittently now, nine months later.
“I began to feel confused, and texted to my granddaughter that I feel like I have a ‘brain disconnect.’ I lost my ability to think right, comprehend and follow directions.
“When work was explaining how to have my doctor fill out my FMLA [Family Medical Leave] paperwork, I was having a hard time following directions.”
The injuries that Adley sustained and the conditions she continues to experience include damage to her brain, heart, gastrointestinal tract and her vision.
Adley described the symptoms as “progressive and interchangeable,” coming and going for a few hours at a time, before reappearing again or new symptoms appearing.
She likened the experience to feeling like “a voodoo doll where someone keeps taking turns stabbing me in my different body systems,” and a “pinball machine in slow motion.”
Adley kept a notebook of her symptoms and injuries, and categorized them broadly as follows:
- Brain and cognitive: “The most terrifying” injuries she experienced were “a loss of executive function and cognitive function” and a diagnosis of “autoimmune response from COVID-19 vaccine” from her doctor who said her symptoms matched those of autoimmune encephalitis.
She also described blurred vision and confusion, forgetfulness, some loss of short- and long-term memory, confusion, disorientation, an inability to follow instructions or find solutions, some loss of reasoning and judgment skills, slurred speech and difficulties with spoken and written language, sudden anger issues and paranoia, a skewed sense of taste or loss of taste, partial loss of hearing and difficulty performing normal activities such as walking up and down stairs.
Adley recalled telling a nurse’s aide she felt her “brain got dumbed down … like I dropped 50 IQ points,” and added, “I finally coined the term: I have a loss of thought process algorithms,” as a catch-all for the collection of brain function and cognitive symptoms she was experiencing.
Many of these symptoms, such as taste or hearing loss, still come and go, she said, adding she has “a two-second memory … if I don’t write it down, I will forget.”
- Heart: Adley described severe edema in her feet and ankles, saying that as a nurse, she is “aware this could be a sign of congestive heart failure.” She also described symptoms of postural orthostatic tachycardia syndrome, or POTS, which only recently subsided, including feeling like her “heart was being pumped up like a balloon.”
Adley also described alternating low and high blood pressure, fainting episodes and heart palpitations.
- Gastrointestinal: Adley described “diarrhea, vomiting and dry heaves for months,” and quick alternations between feeling hungry and not hungry and an overall loss of “desire to eat anything that I used to have cravings for.” She said it was “like my food was staying in my stomach and not going anywhere.”
- Lungs: Adley said she experienced “episodes of coughing for hours with clear phlegm” and then the coughing would “suddenly disappear.”
- Muscles: Adley described “burning, boiling pain, terrible muscle spasms” that would travel through her body “in a quick wave.” Her muscle spasms, while now less severe, still continue when she lies down.
- Skin: Adley described peeling skin at the tip of her fingertips and spontaneous bruising all over her body.
Adley also experienced intermittent sudden weakness in her ankles and knees, intermittently swollen lymph nodes and tinnitus that also was initially intermittent but “appears to be permanent in both ears.”
Together, these symptoms “affected everything,” Adley said. She was terminated from her job of 10 years because she “took too long” to return from family leave due to her vaccine injuries.
She also experienced an Epstein-Barr relapse and continues to experience fainting episodes.
Finding new employment has been challenging. Adley described going through “an entire month’s process to obtain a job, and they told me … my medical [vaccine] exemption was denied by corporate.”
This was despite the fact that her doctor wrote, in reference to Adley, an “autoimmune reaction to the COVID-19 vaccine” and that “this individual had significant side effects from prior COVID-19 vaccinations … The COVID vaccine is precluded because the risks of vaccination outweigh the benefits.”
The loss of her employment also meant the loss of her health insurance, according to Adley, who also said that “walk-ins were not accepting me.”
She said her neurologist told her that “the CDC [U.S. Centers for Disease Control and Prevention] is being very strict, and only allowing exemptions if you have paralysis, such as from Guillain Barre, or death.”
Kate: ‘I don’t think I’d be here’ if I took the second dose
Kate, a Minnesota teacher who asked that her full name be withheld, received her first and only COVID-19 vaccine, a dose of Moderna, on Feb. 16, 2021.
Kate told The Defender that she feels “lucky” she did not get another dose, despite almost doing so.
Kate said she heard of many people who had a reaction to the first dose, but a much worse reaction following the second dose. “I don’t think I’d be here,” she said, if she had received the second dose.
Kate got “super sick” after getting the Moderna vaccine, sustaining vaccine injuries including “tinnitus, head pressure, dizziness, bone pain, difficulty walking, heart enlargement and atrial fibrillation” — and “the most severe insomnia of my life.”
She feels better now than in the last 16 months and has done “a lot of natural healing,” she said, but added, “I don’t know if my heart will ever be the same.”
While she was previously very active physically, since the vaccine, she’s had to limit activities she used to enjoy, like hiking and biking.
Kate contracted COVID-19 in December 2021, but “it was nothing compared to the vaccine injury,” she said. “Absolutely nothing for me.”
Her injuries have affected her ability to work. Kate said:
“There were days I would literally drive into a parking lot at school and realize I had to go home … at least ten times, maybe more.
“I would drive into the parking lot and think, man, my legs are killing me. There’s no way I can get out of this car and go to work.”
Kate said she feels fortunate she could afford a private doctor, and one who has not been dismissive about her vaccine injuries.
“We’ve probably spent … a little over $10,000 out of pocket because of the private doctor co-pays, meeting the deductible, which is great compared to lots of other people. So I feel like I’ve had a lot more resources than some people … so I feel lucky.
“I was already seeing a … doctor before this happened to me, and she was more open. She recognized right away that something was wrong. She didn’t quite believe me right away, she was a little skeptical, but when she found out that my heart was not reacting the way it was … she said, ‘Oh my God, you’ve never had a heart issue before?’”
Her doctor recommended Kate visit a cardiologist, who initially was dismissive:
“Basically told me that I probably just got stressed out and that’s how I suddenly got atrial fibrillation, which I thought was hilarious.
“I went home and I was like, he’s doing the ‘anxiety’ card on me. He’s treating me like I’m a woman and oh, I just got so anxious over my shot.”
After leaving the cardiologist a poor review online and stating she was “really upset,” he retracted his original diagnosis and “agreed it was from the vaccine.”
For Kate, her most difficult experiences with vaccine injuries haven’t been with doctors, but stem from “the psychological pressure you get from other people.”
“The way that other people treat you has been terrible and I had probably five straight months I didn’t want to get out of bed.
“Mostly people think, ‘I don’t know, I’ve never seen it.’ If somebody got in a car accident, someone wouldn’t say, ‘well, I’ve never gotten in a car accident.’ Nobody would say that to you. So that emotional side is difficult.”
Ayman: ‘There is no human left in me’
Ayman, a graphic designer in Melbourne, Australia, who also requested his full name be withheld, received his first and only dose of the Pfizer COVID-19 vaccine in late 2021.
“After 48 hours, I had this range of heartbeats, from resting to 160, all of a sudden, and I freaked out,” Ayman told The Defender. “I jumped, my head reached the ceiling, and I had to call the ambulance.”
Ayman’s experience with doctors and other healthcare practitioners mimicked those of many injured by the vaccines.
“I told them that I took the first dose of Pfizer … and then they said, ‘this is anxiety.’”
Ayman described what happened soon after he was vaccinated:
“The next day, my body went into, I don’t know, how can I explain it? If I open my eyes, I just shout and cry and go into hallucinations, a panic attack, anxiety, suicidal thoughts.
“But all of a sudden, these thoughts, with the nerve pain like electrical shock [along my] entire body, spinal cord to the brain … going into shakes and tremors, and I couldn’t even walk.
“Half of my brain was extremely not able to connect with the other side of the brain. So it was like, imbalanced.
“It’s like something not normal … I don’t know what happened to my brain, like something really not normal … I used to walk and I didn’t know how to come back home, barely use my phone on GPS and then come back home on my GPS even though I would walk just a few blocks over.”
His injuries are impacting every aspect of his life, Ayman said.
“I have extreme memory loss, and this is not normal. I’m a graphic designer, I work in creative work, and all of a sudden I don’t know who I am. I couldn’t drive. I couldn’t walk. I had to learn how to eat. I didn’t know how to hold a spoon, so I didn’t know how to eat.”
Ayman described experiencing “dementia, demoralization, depersonalization, dissociation, all of a sudden, at once.”
He also developed heart palpitations, “like my heart was either overbeating, or sometimes it’s not. Sometimes [being] a bit disoriented, vertigo, fatigue, all that kind of stuff.”
“And the top of my symptoms is, I don’t feel my body. I don’t feel the upper body, so there is no sensation there. I don’t have feeling in my face, in my ear … so I can’t find work. I can’t work. I can’t do anything. I’m basically disabled. I just walk a few steps out of my house just to go to the park a little bit and then come back home. But otherwise there is no mind.”
Ayman reported all these symptoms to his general practitioner and to the immunization center he had visited. However, “they didn’t offer any treatment, anything,” he said, other than a diagnosis of “anxiety,” a diagnosis of long COVID “without being tested positive for it,” and a referral to a psychologist.
Reflecting on his current condition, Ayman said, “I don’t have a past or a future, just barely the present. I don’t know what I’ve done yesterday or this morning. It’s nonexistent.”
“I’m just talking to you right now … and then that’s it,” he added. “I don’t have anything in my head.”
Support group members: ‘I feel I’m not alone’
Parker told The Defender that she decided to start her online support group for vaccine-injured individuals because she “felt so alone” — a sentiment that was shared by the other members of her group who spoke with The Defender.
“A lot of us have anxiety and depression from this now,” said Parker. “And I hear people who just want to give up or they feel like they’re dying or that [they] wanted not to wake up.”
Experiences like these prompted Parker to establish her group. She said:
“My anxiety and depression were getting worse, and my daughter said to me, ‘Mom, you have always been the person to help others, maybe you need to focus on that for now.’
“So I created my support group to focus more on offering support to those that have immediate needs, whether it is emotional support, resources for food, housing, rent, financial assistance, and educational/medical information related to helping them get treatment, medication, and other [needs].”
Parker described “a two-and-a-half hour phone call with somebody the other day who just needed to talk. That’s all they wanted.”
“Sometimes, when you’re in your own head and you’ve got your own thing going on, it’s hard to help yourself,” added Parker. “So I wanted to be a platform for people to be able to help those other people find resources, find others they can connect with.”
Kate told The Defender she initially started a tinnitus group, before joining Parker’s group. For Kate, her membership in such groups is “so very valuable.”
“Any group that I’ve been in has been fantastic,” she said. “A lot of it is just emotional support, suggestions for treatment … and then sometimes, when I’m just super stressed or up at night … I know there’s always somebody online that I can message.”
“It just makes you feel not alone,” she said.
Ayman also finds the group helpful, in a context where family members and other individuals in his life tell him to “just get over yourself” — a reaction he described as “like a knife in my heart.”
“The emotional part of it is really, really helpful,” Ayman said. “you go in a group, they understand these symptoms, but in real life, nobody gets you … to them, it’s just anxiety.”
Adley told The Defender she found the group when she “began looking for help and support” because she “felt so alone in this.”
Parker’s group also played an important role in helping members go public with stories that often are not only emotionally difficult to recount, but also frequently censored by social media platforms.
“It has been difficult to get out our stories to the world,” Parker said. “Everywhere we turn, we are blocked and banned on social media. Our videos are removed for ‘community standards violations,’ which makes no sense when they are videos of our pain and suffering or us going through tremors and brain fog.
“We are ridiculed and made fun of as crazy, lying pigs, ‘anti-vax’ and people with agendas to stop others from getting the vaccine. It breaks my heart, how far humanity has fallen that it is okay to make fun of others’ suffering and downplay what others are going through.”