Daniel Avesar: Understanding His Own Brain Changes After a Traumatic Brain Injury

For people living with TBI, articulating what is happening inside the brain can be challenging. Daniel Avesar went so far as to get a PhD in neurophysiology to better understand his own injury.

For people living with traumatic brain injury, communicating what is happening in or brain to people without brain injury can be incredibly difficult. With symptoms often causing an out-of-body feeling and gaps in memory, it can even be hard for doctors to understand what is going on in an injured brain and know how to help. 

Daniel Avesar is incredibly familiar with this experience, so much that he studied neuroscience to help understand his own brain, ultimately earning a PhD in neurophysiology. In 1999, at 18 years old, he suffered a severe TBI that required a craniotomy of the right side of his skull. That started his seven-year journey to rebuild cognition, regain his inner self, and address vision challenges. 

Since finishing his post-doctoral work, he’s interviewed brain injury survivors, researchers, and clinicians to increase public understanding and reduce the stigma surrounding brain injuries. On Avesar’s podcast, “Experiencing My Brain,” he has discussions with people living with brain injuries. In his video series, “Building Brain Awareness,” he speaks with clinicians and researchers on brain injury topics. 

Avesar joined Being Patient founder Deborah Kan in a conversation about how he’s raising awareness and promoting understanding of people living with brain injuries. In the conversation, he also examined his own experience and how it has changed over the years.

Read or watch the full conversation below. 

Being Patient: Your traumatic brain injury was in 1999 when you were 18. Tell us about that. 

Daniel Avesar: I had a severe traumatic brain injury in 1999, and I guess I am defined by my brain injury. I didn’t want to be, but I think about it all the time, and that’s how it is. 

My friends and I were returning from the Coachella Music Festival, the first one [with] Tool [and] Rage Against the Machine. It was awesome. We were driving home in the morning. My friend’s car had new tires, and a wheel came off, and the car flipped and landed above my head, or the roof caved in above my head. 

I was airlifted to Cedar Sinai Medical Center in LA within 20 minutes, and I had a subdural hematoma skull fracture– a huge brain bleed.  I think I was in the hospital for about 38 days; they removed the skull. The pressure went down [and I was in the] ICU. I don’t remember most of that time, so it’s kind of hard to explain, but I have some memories, and I’ve heard stories.

Being Patient: Tell us about what the recovery and healing process was like. 

Avesar: It’s hard to explain, and I can’t capture it all. In the beginning, in the hospital, I felt like I was floating on a cloud– not really present, not really emotional, but I had double vision. I have a list of brain injury problems that changed and improved over time. 

The biggest [thing was] the double vision. My mom says I was like a toddler; I couldn’t think, I couldn’t reason. I was like a kid. I have two kids now, so I can imagine that, but I don’t remember that. I remember the frustration when I got home after the hospital. 

My home [and] the world didn’t feel real. I started this vision therapy. It was experimental at the time, and my eyeball was stuck in the corner, so it was cranial nerve damage. All these exercises were to try to move my eye– and it worked. Took about [six or] eight months. The dates are fuzzy. 

It was just like this roller coaster. I had a good speech therapist. The vision therapy and speech therapy were the two good ones out of the many that really didn’t understand. 

“In the beginning, in the hospital, I felt
like I was floating on a cloud– not really
present, not really emotional,
but I had double vision.”

Being Patient: When you say that your brain was like a toddler’s brain at the time, what do you mean by that? What was your cognition like? 

Avesar: It’s hard to say; I don’t remember that. I wanted to share that this therapist worked with me and with my mom to get me out of the toddler state. My mom said [that] one day, my reasoning clicked back, and I think that’s when my memory starts. 

It’s like I could not think. I could not think in any way, shape, or form. I couldn’t make sense of that, but I was consumed by the double vision.  I try to explain it like I couldn’t brush my teeth, I couldn’t get dressed, I couldn’t plan, and I couldn’t pack a bag. It was the steps of brushing my teeth and then everything in between. 

With the speech therapist, when my memory [started], she said, “Can you do an algebra problem?” I tried to do a basic algebra problem, and I hit this fatigue that put me in bed for about three days. I couldn’t attempt to think– it put me in this fatigue-state. So, her and I started addition, in like these sequences of adding small numbers over time. The processing of thinking was so hard, and they called it slow processing speed, and the cognitive endurance was so hard. 

Cognition across every thought was injured. The first two years after that therapy, if I did enough addition and small increments, then I could do an algebra problem, but then the second or third problem, I hit the fatigue. There’s this wall where you think too much, and you go into this exhaustion. 

I just started drilling and working on everything I could do: brushing my teeth and getting dressed. Those first two years I was back at home, and my mom started taking me to community college, where I was taking the classes.

I started at UC Irvine as a math major. I was really good at math, so I went back into algebra. I couldn’t think. I couldn’t get the information into my head. I couldn’t have the gears of thought happen. Each step, it wasn’t like the steps would happen. It was like this climb to get to [where the] thought could happen. 

The seven years [I would] find what I can’t do, drill, and repeat it regularly. I had eight minds over seven years, which I regained more and more and more.

Being Patient: With traumatic brain injury, the recovery can depend on what part of the brain was injured. What did doctors tell you about what recovery would be like or about what was injured?

Avesar: They give you these graphs. The best doctors said to me [that] they don’t know anything, or they don’t know what’s happening. When I tried to explain what I was dealing with, I didn’t feel like they were confirming or understanding.

That’s why that one speech therapist who knew about cognitive problems, to some extent, was helpful. She knew about the fatigue and was trying to encourage me never to get to that state. I didn’t when I was with her and I, but I did across everything. You work, you work, you work. 

“The seven years [I would] find what I can’t do, drill,
and repeat it regularly. I had eight minds
over seven years, which I regained
more and more and more.”

You’re trying to rebuild. The term metacognition is helpful because people think about thinking, but when you’re missing thinking, it’s not like, “Oh, I clearly have this problem,” it’s like it got scooped out of your mind. As you’re trying to function every day, it doesn’t work. 

I call it experiencing my brain, which was the perspective in myself to find out what I couldn’t do, and then I would just start repeating it as much as I could. I was kind of doing this secretly because I learned people weren’t understanding what I was dealing with.  It was really, really weird. 

The other thing was, with the vision therapy, as my double vision reduced, I all of a sudden I had this feeling, and I couldn’t explain it. I realized my mind was not my mind. I believe I injured a part of my brain that creates the self. It felt like my inner self was gone. 

I was bouncing between working on my cognition for everything and feeling that I would repeat this mantra: my mind is not my mind, and I need to get my mind back. I’ll do that every night. There’s about seven years where, if I work on something long enough, all of a sudden, that or those capacities come back. Then I’m at the next stage, and the next stage, or the next stage. 

On my podcast, I’ve met a few people who have had similar experiences. I interview them, and I really grill them about the details. Other than that, the doctors and those who are supposed to help– they didn’t really understand. They did give me the ropes of thinking about how to rebuild myself. 

“I realized my mind was not my mind. I believe I injured a part of my brain that creates the self. It felt like my inner self was gone.”

Being Patient: Do you have any longer-term impacts of your TBI today? It sounds like you’ve done a pretty good job in terms of identifying the symptoms and coming up with solutions,

Avesar: The journey of it was: the double vision, my mind is not my mind, [and] really bad sleep. I would wake up in the night. At 5 p.m., I’d be wide awake, and at 3 am I’d go to sleep. It’s called a circadian rhythm misalignment. Then, the cognition stuff was the biggest, also sound sensitivity, depersonalization, and derealization. 

[Over] the seven years those things changed and somewhat improved. Then I’m like, “I’m normal.” I didn’t know what to do with myself, and I got into neuroscience. I got into neuroscience to understand and make sense of what happened to my mind, but I didn’t find many people to talk to. 

Then, after my PhD, and then I did my postdoc, then I started feeling the emotions around everything that happened. It was about 17 years after my brain injury, and that was like a whirlwind. It’s called alexithymia and I believe I didn’t have the capacity to feel. 

The last six or seven years I’ve been working on that. I would say those other problems truly healed to 90 or 95 percent, maybe beyond, especially the cognition. I have a thirst, where there’s a pressure in my head, and if don’t drink water, I get this like pressure, which connects with cognition. That one is still with me, but it’s complicated. The last seven years, I’ve been dealing with the alexithymia and almost building a way to feel and deal with the emotions. 

“ I got into neuroscience to understand and make sense of what happened to my mind, but I didn’t find many people to talk to.”

Being Patient: Tell us a little bit about that. What did it mean for you to not have access to your emotions until recently?

Avesar: In the beginning, I just had this tunnel vision to fix myself and understand what was injured. I realize now that was driven by shame and the inability to be like that. But I had no pain; I had no sadness. I had these huge frustrations when I would hit the thing that was the next step on the baby steps to improve. 

Then, I would collect myself and just get to work with fixing and trying to work on it. I had frustration and I had anxiety that I would be like that. Some discussions with people now have helped me realize that I had these glimpses of absolute rage. 

My mom tells me [that] when I was in the hospital, after the coma [and] I was in an induced coma, she said I was trying to break out. I was fighting. I was like in a straitjacket. It was crazy, but I don’t remember any of that. Those are the only emotions I had. 

Cut to 17 year years later when I realized everything was about my brain injury. First, I was trying to find a therapist, and I couldn’t find someone that understood. Brain injury people helped me recognize the grief and the pain. I used the mindfulness tools and the ways that I had dealt with the cognition to feel, and it was like this wall of emotions that I hadn’t touched it was so overwhelming and so intolerable.

There were about two years where I regained it, and then through the talk series, I met Dawn Neuman, who is a researcher who studies alexithymia. me, and I got ideas from her. I had a long list of therapists until I found one who would listen to me and believe me, and it was almost like building a bike with training wheels to feel. 

Then I had the emotions. They would hit late at night. It’s like a jello basketball, and the feelings don’t have a form, and then you learn how to feel them, and then how to cry. One of the podcasts, “Laminated with Grief” is what that woman, Weeks, called it, where she learned she was able to feel it all. 

I learned from her how to feel the pain. Then I did acupuncture, as per her recommendation. It exposed to me my heart. I’ll get in this [state], like, in those movies where the guy’s fighting and it’s all action, and then afterward, he sits in his car, and he’s like screaming. I had that. I had that through the acupuncture, and I started to feel. I feel my heart and pain and sadness, and I thought something was wrong with me. 

I went to a cardiologist. My heart’s fine. It was emotions in my body. It’s been a really weird process, almost of an inability to feel, an inability to recognize your emotions. There’s a number of people I’ve spoken to where they have some people who will say, “Oh, they have the emotion, but they can’t recognize it.” Other people, [it] doesn’t feel like they have it. 

That was after the postdoc, I went to a support group and started connecting with people, and that was where I met a guy, Randy. He’s in several episodes, and he and I were relating. There’s this flat, no emotions, no highs, no lows, except for the frustration. The frustration was beyond belief, but that, I guess, went away once I improved my cognition enough. I’m still dealing with that, but I’m much better. 

“I had a long list of therapists until I found one who would listen to me and believe me, and it was almost like building a bike with training wheels to feel.”

Being Patient: In speaking to others navigating brain injury, on the podcast, video series, or in support groups, what have you learned? Do you have advice for others navigating TBI or CTE? 

I want to say that in the beginning, I didn’t give any advice. I’m not a clinician. I don’t feel qualified to. In the beginning, I was too afraid to say anything because I was like an anthropologist that showed up in their mind, and I just wanted to hear what they had to say. 

Now what I say is like, “What are our core problems?” There’s the problems the outside world sees, but there’s these core things that are injured, that are not working in us, that are hard to use, that sometimes they’re just completely gone, but oftentimes it’s stranger than that. 

I talk to them about trying to approach that with baby steps, which is, you want to do something where this is the goal, but you can’t do the goal. You can just start to work at it. Getting used to the baby steps is the way to get out or improve, and [that is] how I look at it. 

Then the other biggest thing is learning not to push your limit. It took me four years to realize that, and the limit puts you in this fatigue-state, or this, like zombie state, or this just like exhausted state. 

I was hitting the limit, and then I had to sleep for three [or] four days at a time, over and over and over. Then, [in] the fourth year, I learned how to basically cut everything in half. Whatever I want to do, I have to do about half of it, and then exercise and breathe. 

I did a lot of just sitting in water. Water felt normal to me. It’s hard to explain. I try to tell people to learn, to not push their limit. The funny thing is that I’ve helped several people in the support groups like this. This is casual discussion, and we talk over time, but they’ll come back to me like, “You’re right,” because when [you] hit that fatigue, you’ve just gone too far. 

“There’s the problems the outside world sees, but there’s these core things that are injured, that are not working in us, that are hard to use, that sometimes they’re just completely gone, but oftentimes it’s stranger than that.”

Being Patient: How did you get from finishing your PhD to doing this work with your video and podcast series?

It’s not a sad story, but it was burnout. After my PhD, I thought “I will never do what I did in my PhD.” It was cellular level, but it helped me to think about the brain. [It] was [what] I needed to understand how to think about the brain to make sense of what happened to me. 

Then, in my postdoc, I tried to go to the next level with systems, live animals and recording in different types of neurons– really systems-level neuroscience. First I gave up, I burned out, and I was depressed, and then I realized it was all about brain injury. 

Then, the podcast idea came out of talking to people on the phone about what they were dealing with. I realized, if I can capture this, this will be helpful. That idea was first, and then the talk series. As a brain-injured person studying neuroscience, I was learning about the brain. I was trying to find the systems that underlie what I thought I injured. I didn’t have doubts about the problems I had. They were very clear. They were every day. 

There was this gradual rebuilding, where I had to deal with the same problems over and over and over and over. I was trying to find out what is known about those brain systems. There’s a lot of research out there, so I tried to package that. For a brain-injured person, if you learn about the system underlying what you injured, it’s very powerful. I’ve spoken to people about that now, and packaged that [in the video series]. 

Being Patient: Do you believe the brain has the capacity to heal completely when you suffer a traumatic brain injury? 

I think it does have the capacity to heal completely for very specific realms. If you go outside the realm, new things may challenge it in new ways. To be at 10 or 30 percent is horrible; to be at 50 or 60 percent is much, much better. 

Once you get to the 90 or 95 percent, it’s almost like where you don’t know if you’re ever going to be where you [were], but you can function and you appear normal. I’ve met enough people like that. It’s nutrition, it’s sleep, it’s support, and it’s that effort. I do believe that we can get back to a functioning and “normal” range. 

Being Patient: What would be your cheat sheet of the top things to remember when healing from TBI or another brain injury?

I think that there’s no formula for everyone. [There’s] the sleep factor, the nutrition factor, exercise to the extent that it doesn’t aggravate things, and finding an outlet. Finding a connection with other brains or people, a way to validate. 

The main way I look at it is like, “What are your problems? What are you dealing with? How can we talk about that?” I think that most of them have a core, like these nuggets of “What [is] the brain injured thing.” 

There’s layers of what other problems lay on top of it, but if you can get at that and learn how to not push that limit, [you can] learn how to work on that. I have so many discussions with people where they’re trying to find a therapy or help at that level, and it’s hard to find– but it is out there. 

Learning to not push your limit and try to provide all those other things for your body with exercise, that was a huge factor for me. But I’ve met many people that it aggravates their neck [and] it aggravates their body, in which case you may baby step into exercise, but you just feel foolish doing that. 

There’s a lot of self-criticism, and it doesn’t make sense. When these parts are missing in you, it’s really hard to deal with, but you have to, push through it or learn how to accept it. 

Katy Koop is a writer and theater artist in Raleigh, NC.