Lived Experience with TBI
Guest Blogger: Dani Gehle

Lived Experience as a Traumatic Brain Injury Survivor

Wondering how Traumatic Brain Injury overlaps with neurodiversity? Dani Gehle is guest blogging this week to tell us all about her lived experience. Read on to learn all about her story!

What is a TBI? And what
about other brain injuries?

Traumatic Brain Injury, or TBI, is exactly what it sounds like: an injury to the brain sustained through an external traumatic force or event. Falls are the leading cause, but they can also come from getting hit in the head, car accidents, sports injuries or the like. Concussions are a form of TBI, only slightly less severe. 

Acquired Brain Injuries (ABI) are brain injuries that come from an internal force such as stroke, infections or illnesses. 

There can be many causes for each type of brain injury, but the force or cause that creates the injury is what differentiates how it is classified.

Tell us your story.
How has your TBI shaped your life?

I sustained a traumatic brain injury to my left frontal lobe due to a car accident caused by a third party uninvolved in the wreck.

If you had asked me how the TBI affected me or shaped my life five or ten years ago, I would have told you it had no effect on me. I was fine. After the injury, I was determined that no one would be able to tell I had a TBI; I didn’t want to be seen as “damaged.” However, because of that, I think I became even more determined to succeed. I graduated Summa Cum Laude with my B.F.A. in Musical Theatre, and went on to get my M.A. in Graduate Liberal Studies from Duke University; I hold multiple jobs, volunteer regularly, and got married last year. 

Now more than 13 years post-injury, I’ve learned a few things about going through life with a brain and body that don’t always work the way I expect. Every day is different. Some days are harder than others. A brain injury doesn’t have to limit you though. It might change you, make some things more challenging, but you still get to decide who you are. I am stubborn. I don’t like for people to tell me what I can or cannot do. I chose to not let it be a part of my life, but that made me so determined to succeed, it became an even bigger part, as fuel, if nothing else.

Sustaining a severe traumatic brain injury showed me that I am a fighter, in more ways than one. You really have to be. If I hadn’t advocated for myself, and been determined to do things my own way, if I had listened only to what the doctors told me, my life would look completely different. A few years after the injury, I got a tattoo on my ribcage on my left side; it says “Fighter.” I included the period behind it because to live this life, that’s not just a word; it is a whole declaration.

What are you most frequently
asked as a TBI survivor?

I don’t often get asked about brain injuries, because it really has been an “invisible injury” for me. The few residual issues I do have are things I mask really well, so if I don’t disclose that I had a TBI, people don’t know. If I do tell someone, they’re usually quite surprised and ask me about any lingering problems, recovery time, etc. 

I will routinely get asked about my memory, what I remember from before the injury or the events that caused it, and if that has changed.

How do brain injuries and
neurodiversity overlap?

Honestly, I had never thought about this until the last few months while reading more about neurodiversity and disabilities. I recently had the opportunity to listen in on several discussion panels and webinars as part of Neurodiversity Celebration Week and it was heart-warming to see others embrace all parts of themselves. That’s opening me up to the idea of being able to do that myself, too.

All minds, whether typical or divergent, make up our neurodiverse society, and that’s a good thing! No one wants to be the same as everyone else.

I now know I am neurodivergent. I have a brain injury, which has worsened my anxiety, caused PTSD and dyscalculia, and changed my thinking patterns in some ways. But because I have spent 13 years masking and showing everyone that I am “okay,” I am not entirely sure how to adopt this without people thinking I am faking something or trying to get attention. (And I’m not interested in that. I nearly died… I’ve had more than enough attention!) This is why unmasking can be particularly difficult for someone like me.

How have you embraced neurodiversity?

My first steps into embracing neurodiversity are reading everything I can get my hands on and trying to understand it all. I have also recently bought a couple of neurodiversity and TBI Awareness shirts (things I never would have worn before) so I think it’s just going to be a process for me personally. I have tried to start paying attention to the things that I do that aren’t “typical” or that bother me. I call them my “neuro quirks.” 

For example, I took a bubble bath the other day, and I realized the thing I don’t like about bubble baths is that I can hear the bubbles popping and it annoys me. But I believe that everyone has their “things,” even if they don’t identify as neurodivergent. 

Is TBI included enough in the conversation on neurodiversity?

I would like to see brain injuries recognized more widely within the neurodiversity movement. I know there are things I do or experience now that are different from before sustaining the TBI and different from my “neurotypical” friends. There have even been times in the past few years where I’ve thought, “Am I autistic?” or “Do I have ADHD?” The answer to both of those questions is no, but there are a lot of similarities between TBIs and other neurodivergences, which I hadn’t always understood. I would love to see us, as a society, accept and love all people though, regardless of their abilities.

More Resources on TBI

My ultimate goal in starting to embrace my “neuro quirks” and love all of who I am is to hopefully give others the freedom to do the same. When I was in grad school, my master’s project was a short film that focused on survivors of traumatic brain injuries. I premiered the film at the Brain Injury Association of North Carolina’s Survivor and Family Conference in 2018 when I gave the keynote address, and have shown it at a handful of other places, but I don’t show it often enough. The people in the film are truly amazing, and they deserve for the world to see how unique and wonderful they are (as do all Neurodivergent people!) 

That being said, I hope you will take some time to watch the film, in addition to familiarizing yourself with brain injuries and neurodiversity. Most importantly, embrace others, their differences, and be sure to love yourself and your neuro quirks, too!

How to Connect with Dani

Although I am certainly no expert, if you need to talk, I’ll listen. No judgment. If you want to ask questions or share your experiences, I’m here for you. If you are curious and just want to learn more, my weird, academically-wired brain will have that conversation any time! 

You can find me on Instagram @danigehle