Living with a TBI-My Personal Experience

Strap in, this is going to be a long one. I have mentioned this before and I don't want to rehash it to death but I wanted to give all of you (hopefully) unaffected people a window into life with a tbi (traumatic brain injury). I wanted to distill all of the knowledge that I have learned in my six years of dealing with this into one blog post. This is only my personal experience and everyone has a different experience.

Since all of this started back in 2020, I have slowly but surely been getting back to normal life. I have been through the ringer health wise. I won't rehash all of my various health issues but needless to say, I have gone all the way from near death to pretty bad to ok and now I have moved onto being stable health wise. I am inching closer and closer to normality. I have been truly blessed and lucky throughout it all to have the support of my family and friends (and Jenny's family also). However, prior to coming back home to Texas in January of 2026, I really never pushed myself to get better. I mostly just let my body heal naturally. 

I was not motivated to work hard on getting better because I didn't notice any progress. Because I didn't work hard to get better, I didn't make any progress. It was a big vicious circle. This was partly due to my lack of dopamine (the feel good chemical in your brain that gives you motivation, reward, drive and happiness). I had a lack of dopamine because of going through my depression and my body naturally produced less dopamine while healing from my tbi. 

However, I can't blame my lack of motivation 100% on my lack of dopamine. I need to take some personal responsibility for my lack of progress. Luckily, I was able to naturally restore my level of dopamine through exercise. I was able to find my motivation to continue improving. Both for myself and for everyone around me. Because I know that my wife and daughter will not get to go back to normal life until I do. They have put up with enough. They don't deserve to be prisoners because of my health issues. If they have not given up on me, it would be unfair of me to give up on myself. 

Prior to coming back to Texas, it was like I was sleep walking through life. I was alive but I was not truly living. I woke up every day but nothing really motivated me. Then, once I came back home, with my parents help, I managed to get out of my brain fog/zombie like state and I started exercising daily and forcing my brain to reconnect with my body.

My brain doesn't always reconnect with my body instantly. Everything takes longer and more patience than before. Nothing is easy or automatic anymore. Someone without a tbi can reasonably expect their brain to almost instantly identify a potential problem, then their body will respond almost instantly to avoid the problem.

However, it is different for me. Because I have damaged optical nerves due to the uncontrolled hydrocephalus, I don't see things well anymore. Even when I can see the potential problem, it takes me a while to see the problem and identify a potential solution. Nothing is easy or automatic anymore. 

I have become less reliant on this as time has gone by. However, I still use a lot of mental visualization techniques and mentally pre determining the outcome that I want to achieve. Thereby willing it into existence. In addition to my mental visualization technique, I also have learned that I can physically manually command my body to cooperate with me. It doesn't always work, nor does it work forever. 

However, it absolutely does work for me personally. I have become like a drill instructor in the Army or a strict dad with a rebellious teenager. I don't beg, plead or hope that my body will cooperate with my mind. I simply don't give myself the option of failure. I tell my body that it must do what I want and it generally does it. I can manually activate the specific neural connections that I want for a specific type of movement. I also visualize myself floating on a cloud or that the particular exercise machine that I am using is physically part of my body. 

I have learned to become more patient with my body. I have to repeat things over and over before I can do them successfully. I remember that I was trying to do a balance exercise where you put your feet close together, close your eyes and try to stand still unassisted. This is not an easy exercise. I failed at it consistently, on a daily basis for 29 days in a row. It was very disheartening to wake up and know with near certainty that I would fail. However, unlike previous years, I kept at it even though I kept failing. On the 30th day of trying, my persistence paid off and I was able to successfully do the exercise. 

Let me give you an example, the other day I was walking with my walker to go to the doctor's office. I was going up the ramp, but it was blocked off in one direction. My mom immediately saw and realized that you couldn't get up the ramp in that direction. However, I first had to see that the direction was blocked off (no easy task due to my damaged optical nerves) then I had to recognize that you were unable to continue walking in the blocked off direction. My brain took longer than someone who doesn't have a tbi to recognize the problem and formulate a plan to avoid the problem.

My whole life, I have never dealt well with change, spontaneous things or new, sudden things. I thrive on the familiar, routine, repetitive things. Even if it might seem less efficient and more labor intensive. This part of my personality has only been magnified and increased since I have had all of my brain surgeries. 

Until I was actively working out for about three months, doing the elliptical machine was extremely challenging for me. Coordinating my arms and my legs at the same time was extremely difficult for me. Starting out, I could barely get through a half mile (0.85km) in 33 minutes. I had only brief flashes of "good time" where my mind was connecting with my body. It felt like an impossible task to get 33 minutes of "good time". Eventually, I did achieve a whole 33 minutes of "good time". 

Prior to exercising for about 3 months, I felt like my mind was in a pressure cooker while I was on the elliptical machine. I was not able to do anything other than focus totally and completely on the elliptical machine. However, after about three months of exercise, I was up to the point where I was able to have a short conversation while still exercising. I was also able to let my mind wander. I have had multiple times where I "zone out" and my body goes on autopilot without me being conscious of actually exercising. Yet the machine registers that I am moving. 

Physical exercise for me is not optional. I have become Mr Fitness whether I wanted to or not. I still don't like all of this exercise. However, now that I have to do it in order to keep my brain active and healthy, I am trying to get to the point where I actually enjoy it. Now that I walk for an hour daily five days a week and I work out six days a week for between one to two hours each day, I am trying to treat it like a job and not something I dread or hate. 

I recently watched an interview with a German doctor on YouTube. She was explaining that most people hate exercising and they do it only out of a sense of obligation. I know that I can relate to that. However, she was saying that we should treat exercise as preventive stress and maintenance for our bodies, which we can control. The stress that we put on our bodies by exercise, raising our heart rates, blood pressure, breathing, sweating (among other things) is actually good for our hearts and general health and it protects against dementia. So, I am going to try and improve my mindset when it comes to exercise. I will start trying to actually enjoy it, now that it is not optional for me. Besides, it will keep me healthier for longer. 

I am only 41 years old. In my mind, I feel 41 years old. However, physically sometimes I feel 91 years old. With my limited mobility, everything is harder for me and everything moves slower. However, I am extremely fortunate not to be completely paralyzed or in a coma. Life is hard. I would not wish this on my worst enemy. However, I am grateful for every day that I have and for the things that I can still do. I have amazing family and friends and I still have so much to live for. I have no idea how long that I have left on this earth. But I plan on taking advantage of every day that I have left.

I have previously mentioned the pons device in a separate blog post. We are trying to get one for me to use to hopefully restore my ability to walk unassisted. If you are interested in more details, please read my blog post about it. The last thing that I wanted to mention was meditation. I also wrote a separate blog post about it. 

Basically, it has helped quiet my "noisy brain". If you are interested in reading in more detail about meditation, feel free to check out my separate blog post. I also wanted to mention that I use Google Gemini (Google's artificial intelligence) for many of my random questions. I was looking for ways to naturally increase my dopamine levels without using medication or supplements or anything. It recommended to me to take an ice cold shower to naturally boost your dopamine levels. I knew I couldn't tolerate a full cold shower. However, I decided to try having the last minute of my daily shower, ice cold. I remember dreading it for months. Every shower I would mentally hate the last minute of my daily shower. 

However, I kept doing it. After about three months, the switch in my brain magically flipped and I began to love it. The ice cold blast is so refreshing. It wakes you up, it is good for your skin and it closes tightly the pores on your skin, preventing dirt from entering, not to mention that it leaves the protective coating on your skin rather than washing it away. It also cycles your arteries and blood vessels open and closed thereby helping your cardiovascular system. This is a habit that I plan to make lifelong. 

I am hopeful that I will be walking unassisted by my 42nd birthday with the assistance of the pons device. However, if we are unable to get one for whatever reason, I have been practicing using a traditional walker in addition to my stand up walker with forearm support. I walk laps around the local basketball court with my mom five days a week. To complement the use of both of my walkers, I also use a low mobility three wheeled pedaless balance trike called the alinker. It helps me to get around. My eventual goal (if we can't get the pons device) is to transition to using only a cane or a walking stick. 

I apologize if I was long winded, if you made it this far I appreciate you letting me explain everything that I could think of. I hope I did a decent job. I tried to keep this non technical and non medical. I wanted it to be relatable for everyone, even those of you who have never had a tbi. Hopefully, I succeeded. 

Til next time, Tyler