Brain Injury & Lived Experience

Brain injury recovery is often described as a journey, but even that can make it sound more linear than it really is.

There were major milestones in my recovery, but there was never one moment where everything simply returned to normal. Recovery happened over time, and in many ways it continued long after the obvious physical healing was over.

As life moved forward, I built a career, became a husband and father, developed friendships, took on new challenges, and created a life that I am proud of.

At the same time, living with a brain injury has continued to influence how I experience the world.

That is one of the things I have come to understand most clearly: surviving a brain injury and living with a brain injury are related, but they are not exactly the same thing.

As I became more comfortable talking about my own experience, I also became more involved in the broader brain injury community.

Today, I serve on the Brain Injury Survivors Advisory Council and participate in advocacy efforts focused on improving understanding, communication, and support for people affected by brain injury.

I have also had the opportunity to participate in Brain Injury Awareness Day in Washington, D.C., including advocacy work on Capitol Hill.

Those experiences have reinforced something I strongly believe: lived experience needs to be part of the conversation.

Professionals, researchers, clinicians, caregivers, policymakers, and organizations all play important roles. So do the people who live with brain injury every day.

For many years, I did not always talk openly about my brain injury.

Today, I see value in sharing it.

Part of that comes from hearing other people describe experiences that felt familiar to me. Sometimes simply realizing that someone else understands can make a meaningful difference.

That is one of the reasons I continue to speak, advocate, and participate in the brain injury community.

I want people affected by brain injury to feel understood.

I want families and caregivers to have better insight into what their loved ones may be experiencing.

And I want the broader community to understand that brain injury does not always fit neatly into the way recovery is traditionally described.

My brain injury happened on a snowy December night in 2003 while I was in college. What started as a typical Friday night with friends changed quickly when some joking and roughhousing resulted in me falling and striking my head against a concrete hallway wall. I was knocked unconscious and taken to the hospital by ambulance.

I was diagnosed with a severe traumatic brain injury with an initial Glasgow Coma Scale score of 7. My condition worsened as pressure increased inside my skull and I experienced grand mal seizures. My family was faced with critical decisions about how to move forward with my care.

Doctors ultimately performed a craniectomy, temporarily removing a portion of my skull to relieve the pressure on my brain and give it a chance to recover. After 11 days in a coma, I woke up.

But waking up was only the beginning.

What followed was a long period of hospital stays, therapies, additional surgeries, uncertainty, depression, discovery, setbacks, acceptance, and progress. I had tremendous support from family, friends, healthcare professionals, and others who helped me rebuild my life.

Years later, I can look at everything I have been able to build and feel incredibly fortunate. I have a family, friendships, a career, experiences, and opportunities that at one point were far from guaranteed.

I also still have struggles.

There are times when I wonder who I might have been or what might have been different if the injury had never happened. There are challenges that other people cannot see, especially because from the outside I may appear completely fine. That invisible part of brain injury can sometimes be one of the hardest things to explain.

Over time, I have come to think less about recovery as a destination and more as something that continues to evolve.

I am grateful for how far I have come. I am grateful for the people who helped me get here. And I have learned to appreciate both what I have accomplished and the life I have built while still acknowledging the parts that remain difficult.

Brain injury changed my life, but my story is much larger than the injury itself.

I am a husband, dad, friend, technology leader, builder, advocate, and someone who continues to learn more about himself and the world around him.

There are parts of brain injury I understand much better today than I did years ago, and there are still things I am figuring out.

I am okay with that.

For me, moving forward has never meant pretending the injury did not happen.

It has meant learning how to build a meaningful life with it as part of the story.