Advocates in Action: Valerie Groves

Hello, everyone! It’s Amy again. Last month I had the privilege of talking to one of our volunteers, Valerie Groves. She gave a lot of helpful advice stemming from both her educational background and life experience.

Valerie, who is educated in social work and trauma informed care, brings a lot to the React19 organization. She offers her assistance to the React19 advocacy team which offers support and practical advice to the vaccine injured and their families. She helps out with the online vaccine injury support groups, and she works with volunteers to continue to improve all the services React19 has to offer.

Valerie also uses her life experience to help others. She has experienced medical trauma and has had to navigate through the many travails of our current medical system. However, her experience provides invaluable assistance to the injured and their caregivers because she has first hand knowledge of what medical trauma looks and feels like.

Valerie’s medical problems began in 1996. She was in a serious car accident that left her in a coma for several days, and with some permanent cognitive issues. She then experienced an injury from a flu vaccine in 2016. The nurse gave her a shot into the bursa which left Valerie in a lot of pain. She explains further,

“I noticed [that the nurse] was shooting up into the shoulder and I told [her], ‘I think it's too high’ and she said, ‘No, this is right’. She shot [into] the bursa. I ended up with lots of problems from that. I couldn’t move my arm or turn it. I couldn’t lift or rotate it without extreme pain. Thankfully, it resolved in 2 to 3 months.”

However, once her shoulder pain resolved, new cognitive issues arose that couldn’t be explained. Valerie, reflecting back on this time, was troubled by the lack of information or assistance. As Valerie explains further,

“I think I was aware the initial muscle/joint issues were a result of improper procedure and a vaccine injury. I just didn't have any indication that it reflected a wider societal issue that so many have had trouble acknowledging and receiving assistance with. It was additionally disturbing that those in my doctor's office seemed to become hand-tied or unhelpful in finding any remedy or resolution.”

Valerie then had to navigate the medical system to try and find a diagnosis for her new cognitive issues. An MRI revealed she had white matter lesions on her brain, resulting in a potential Multiple Sclerosis diagnosis. Unfortunately, the hunt for a diagnosis left her with $7,000 in medical debt.

Valerie’s trust in the medical system was waning. When COVID arrived in 2020 the lack of potential treatment concerned Valerie. She had a severe case of pneumonia in late 2019 and wondered why treatments changed from 2019 to 2020? Valerie was treated with antibiotics and steroids. Why weren’t these being utilized for COVID? Instead, the only option was “wait until your lips turn blue”.

When the vaccines came out at the end of 2020, Valerie grew even more concerned. Why were medical experts like Anthony Fauci and the CDC suppressing other treatments? Why were scientists and doctors who offered alternative COVID treatments actively censored, or worse losing their jobs? Why was the vaccine the only acceptable option for treatment?

Valerie did her research. She studied vaccine trials and noted that people were removed from these trials due to vaccine injuries. Valerie also spoke out to family and friends warning them of potential vaccine side effects. She refused to take the vaccine herself, which ended up costing her a friendship or two. After a negative interaction with a doctor regarding yet another vaccine issue, Valerie decided it was time to take action. “It lit a fire under my butt”, Valerie says. She joined up with React19 to help out. I asked Valerie what it is like to deal with medical trauma, mental health, and disability, both from a personal standpoint, and helping others navigate through it. “Our system is broken.” Valerie says. “It can be mind blowing for people to understand how difficult it is to navigate a system that is so fragmented and disorganized.” Another problem is knowing where to look for help. “Sometimes it is hard to even know yourself what you need, yet you are expected to ask for what you need and you don’t even know how to explain it.”

Then there is the delicate balance of accepting advice from well wishers who want to help but may not know all that is involved. She talks about the exhaustion one can experience, especially those who never had to rely on government support, but find themselves needing it. It is hard to follow advice sometimes, especially if one doesn’t know where to go, or who to ask.

“No one can really say what’s right for someone else. So many people want to tell you what you should do, but it is only the person themself who can figure it out. It is not always clear and it can be discouraging. You can feel pretty powerless and hopeless.”

Nevertheless, if you can find people that will stand by you through everything, that helps so much. And she says this from experience, “I guess what I have learned is that there are other people there to walk beside you to try to help you find your way.”

The search for potential treatments, can also lead to concerns and distrust, which Valerie understands. A lot of times these treatments are not covered by insurance, and the results may vary.

“You are already in a vulnerable place. And to have to fork over so much money or make so much effort, [you] become even more vulnerable. You are probably already feeling unsafe if you have been through whatever medically that’s already complex, and you are still not healed necessarily. So that in itself is like a trauma. So I think when you see other people profiting off of, or the costs of things, or that they are really invested or hopeful about other products, or how they can help you. [It] can be natural to be skeptical.”

However, Valerie offers good advice in how to navigate that scenario, “It's lots of trial and error to find what helps and not putting your eggs into one basket. It is kind of [like] how they want you to watch out for anyone who promises a miracle cure, right? One thing is not for everyone there are benefits to everything and sometimes for one person it might be more of a risk.”

Valerie also mentioned the importance of speaking up. “It is ok to speak up! You didn’t choose for this to happen to you. Don’t doubt your experience.” She is right. It is perfectly fine to speak out to doctors, family, or friends who may doubt you, or not validate your experience. And most importantly, to be patient with yourself.

“It is ok, not to be ok. Sometimes you might find that you need a break. You may even find it beneficial to process your thoughts and feelings with a therapist or join a support group. For myself, the self-care/break and social supports [are] vital to better understand and accept my own struggle, and...to adapt and succeed in spite of [that struggle].’

Lastly, I asked Valerie what people could do to support the vaccine injured and React19. Along with spreading awareness of vaccine injury, her main message is to be compassionate and sensitive to those around you. You never know who is vaccinated or unvaccinated, injured or not. Many people suffer from “invisible illnesses” where you don’t see a wheelchair or a walker, but that person is indeed struggling.

Also be a supportive and safe person someone can talk to, and not necessarily just telling someone what to do. “They just want someone to believe them, or allow them to struggle without giving them advice.” One suggestion she offered is giving someone the choice. For example saying something like, “Would you like to problem solve, or would you rather me just listen?”

And volunteer! The online React19 volunteer form has a variety of different options on how to volunteer. Everyone has a unique talent they can offer to the group at large. Thank you, Valerie, for all you do for React19. And thank you for all the helpful advice, both for the vaccine injured, their caregivers, and those who wish to support React19. Your life experience, along with your professional experience, offers a unique and helpful perspective in how to help others. You are such an important asset to React19!