Karen Hess - Brain Injury Survivor

Can you share about the brain injury event itself?

I’ve had multiple brain injuries, including a craniotomy, where doctors were only able to remove a very small portion of a tumor. That has complicated things over time. My most recent brain injury occurred on November 28, 2023, and it completely turned my world upside down.

I was at work when I hit my head on a metal bar. That day, I was immediately overwhelmed with sensory issues, physical challenges, and later, a diagnosis of autonomic dysfunction. I became extremely sensitive to light and noise, and my blood pressure and heart rate spike throughout the day, leaving me dizzy and nauseous. I also experience various types of head pain, anxiety, and PTSD.

How did you feel during the first days, weeks, or months after the injury?

During those first days, weeks, and months, I felt like I was going crazy with all the different symptoms affecting both my brain and body. I had never experienced anything like this before. I felt scared, frustrated, and alone.

What kind of rehabilitation therapies or treatment have been most helpful through the process of recovery?

I lean on my faith—I do a devotion each day (sometimes multiple times a day), pray, and journal. In addition, I’ve had physical therapy (PT), occupational therapy (OT), speech-language therapy (SLP), talk therapy, chiropractic care, massage therapy, and functional neurology.

All of these therapies have helped in different ways, giving me the tools and resources I need to continue healing. I also continue working on therapeutic exercises at home.

What have been some of the biggest challenges you or your loved one has faced during recovery?

The biggest challenge has been dealing with overwhelming sensory issues and waking up each day not knowing how I will feel. I try my best to take care of myself while also learning about the "new me" and how to navigate life now.

One major challenge is transportation. I need rides to many places because I don’t feel safe driving. When I attempt to drive, my visual and vestibular symptoms intensify, leaving me exhausted and nauseous.

If there have been setbacks or repeated injuries, describe that journey:

Each of my brain injuries has been different. Along the way, I’ve experienced hearing loss and vision loss, which has been incredibly frustrating. I struggle to hear in certain environments due to specific acoustics and sounds, and I can't wear hearing aids because they overwhelm my sensory system.

Additionally, many places are not ADA-friendly, which makes daily life even more challenging. I am incredibly grateful for FaceTime and Zoom, as they allow me to stay connected despite these limitations.

How has your life changed since the brain injury?

My quality of life is completely different after this last brain injury. Recovery is an ongoing process, and I’m still learning how to move forward with this new version of myself.

One of the hardest adjustments has been retiring from my 28-year career. I now struggle with confusion, difficulty making decisions, and feeling easily overwhelmed.

What role has support from family, friends, or community played in your journey?

Most of my support comes from friends visiting and helping with rides. My sister helps however she can, but unfortunately, most of my family doesn’t fully understand what I’m going through.

I am incredibly grateful for the community of survivors and resources like Hope Survives and other brain injury support groups. These connections have helped me learn how to live as I am now.

Have there been any moments of breakthrough or unexpected positives along the way?

Yes! As I learn more about my brain injury journey, I’ve seen improvements in some areas. Being a survivor of brain injury has given me a new sense of purpose—helping others who are walking this same path.

I’ve also signed up to volunteer with Hope Survives, which has been a great way to stay connected and give back.

What has surprised you about this journey with brain injury?

Looking back, I’m surprised by how different each brain injury has been. No two experiences have been the same.

I’ve also come to recognize my own resilience—I’ve been through so much trauma in my life, and yet I continue to push forward.

What do you know now that you wish you knew at the beginning of this journey?

I wish I had known how widely brain injury symptoms can vary from person to person—and even from injury to injury.

I also wish I had been connected to resources like the Brain Injury Association and support groups like Hope Survives much sooner.

What does "hope" mean to you?

To me, hope means I am a survivor. It means that I can have goals and faith that my life can still be lived in the best way possible.

Hope means taking my challenges and trauma and turning them into something positive—both for myself and for others.

If you could share one encouraging message with another survivor or family, what would it be?

I have been a caretaker almost all my life, so my advice is this:

Take care of yourself—don’t feel guilty about it.

For family members, be there for the survivor, try to understand, and have patience. Simply being a consistent, supportive presence can make all the difference in their healing journey.