I met Brad through one of the brain injury facebook groups and we began chatting about the nature of his problems. We found ways to further the explanation of his problems which was great because these topics are difficult to discuss. After his brain tumor was removed Brad was diagnosed with a rare condition called Hypertrophic Olivary Degeneration (HOD). The olivary nuclei are brain regions located bilaterally in the medulla oblongata that contribute to all types of brain functions including motor function and other basic activities.             https://rarediseases.org/gard-rare-disease/hypertrophic-olivary-degeneration/ It's easy to get caught up in the differences between brain injury as a result of a bump on the head, compared to having a brain tumor removed, compared with having the olivary nuclei degenerate. These conditions all seem rather different. However in all cases the brain is physically altered/injured, and the goal of this podcast is to talk about the experiences that come with such conditions. In the introduction of this episode another podcast gets mentioned, where Brad was also featured and the nature of his HOD was discussed. I mention this podcast not as an attack or a criticism of that program, but as a counter example to show how limited most discussion are when it comes to strange invisible problems that come with brain injury. Usually the details of the invisible problems are left undiscussed.     https://oembed.libsyn.com/embed?item_id=23698007 Experiencing My Brain is a podcast devoted to detailed discussion with brain injury survivors about their experiences, problems, and ways that they have found to navigate their lives. These stories are important to help the non brain injured world make sense of the problems that come with brain injury.

Julie has had 5 brain injuries in her life, occurring in 1970, 1975, 1980, 1987, and 2017. She has experienced problems and setbacks that most people cannot even imagine but they are all too real. Some examples include the feelings of not caring, being wild, loosing your mind, feeling levels or your own consciousness get lost and then return, dealing with fatigue that is so overwhelming you cannot do anything, vertigo, dizziness, being an adult stuck in a child-like state for years and pulling yourself out, enduring horrible treatments, and gaining various forms of inner-awareness that come with each battle for recovering one more part of yourself. These examples are not isolated events unique to this one person alone. Many individuals have to deal with parallel problems.  Julie mentions Michele & Joel's brain injury support group and how they have helped her. Here are links for their group:  https://globalbia.org/gbia-wa [email protected] Experiencing My Brain is a podcast devoted to detailed discussion with brain injury survivors about their experiences, problems, and ways that they have found to navigate their lives. These stories are important to help the non brain injured world make sense of the problems that come with brain injury.

I contacted Weeks to talk about the slow effort of rebuilding a mental capacity that was once "automatic" in her mind. I had no idea how much experience she had navigating through other invisible illnesses and her views on the importance of mental health and sleep to help recovery. We spoke a lot about the grief that comes with brain injury, and how the different levels of "invisible" healing interplay through the brain injury recovery process. ----- Experiencing My Brain is a podcast devoted to detailed discussion with brain injury survivors about their experiences, problems, and ways that they have found to navigate their lives. These stories are important to help the non brain injured world make sense of the problems that come with brain injury.

Randy is a brain injury survivor I have been speaking with for years. We share all types of ideas and thoughts, even so the details we try to relate can be difficult to make sense of since no two brain injuries are alike. The passage he reads at the beginning of recording is called Lessons From The Damned II, and the author is not known to us. I have posted a copy of the passage below.  If any one knows the author I would love to speak with that person and thank you for capturing these important aspects of the brain injury experience in writing. Lessons From The Damned II -Author Unknown The loss of self is often the tragic consequence of brain injury. The medical profession seldom addresses it, yet it is a loss so profound that many never recover from it. Even a mild brain injury can seriously compromise human potential for learning, and personal growth. In the blink of an eye you are transformed from a vital, productive person into a mere shadow of the former self. Then after what passes for a reasonable period of convalescence you take stock of yourself, and find that you are way behind where you ought to be. And, the most frightening realization is that you no longer possess the capacity to catch up. All things considered is there any wonder that the self worth, and sense of self (personal identity) are down the tubes. Living with brain injury is a process that requires tremendous accommodation and adaptation. Brain injury changes the way your brain functions and as a result everything about you changes. The way you feel changes. The way you see yourself, and way you see the world changes too. Things that were once second nature become strange, and difficult. Things that were once easy, and routine now require considerably more time, and effort. The extra effort, vigilance, and concentration needed to compensate for such deficits result in an enormous fatiguing effect. Such extra effort produces a continuous drain on already taxed energy levels, and results in chronic fatigue. Intellectual functions such as short-term memory, reasoning ability, and judgment tend to deteriorate as fatigue increases. The extraordinary effort required to compensate for such impairments give rise to a vicious cycle that leads to feelings of inadequacy, discouragement, irritability and depression. To that mix you add problems caused by: a defective attention span, dis-inhibition, faulty visual acuity, diminished alertness, and altered consciousness and you've got an ugly mess on your hands. Stripped of your vitality and sense of self, there you are naked, exposed, foolish, full of misjudgments, impulsivity, and indiscretions. More dead than alive your life takes on features of the damned, the unloved and the unwashed. Once you come to terms with the horrifying mess that you life now resembles; the next step is to learn to live well in spite of it. Sounds easy enough, but the doing of it takes insights, skill and determination, but it can be done, and we can show you how. The alternative is to throw yourself off a cliff and be done with it, because unless you take it in hand it will become the dog that wags you. ----- Experiencing My Brain is a podcast devoted to detailed discussion with brain injury survivors about their experiences, problems, and ways that they have found to navigate their lives. These stories are important to help the non brain injured world make sense of the problems that come with brain injury.

Justin suffered a brain injury that has drastically deteriorated his visual perception in unique ways. He has been fighting to maintain his life, to continue working, and to retain his independence. However the setbacks that are so common with brain injury have made his internal problems too overwhelming. On top of these inner struggles, being misunderstood by others only adds to the difficulties of brain injury. This discussion is also a good example of how the common mentality most people have to just "push through" challenges using force and grit doesn't exactly work for brain injury. His descriptions of his visual problems bring up very specific details that relate with what is know about how the brain's vision networks use angles and lines to create our sense of the world around us (links below). Although empirical research showing that brain injury can effect these parts of the brain and produce specific experiences is still lacking, it is more important to recognize that the brain is physical and works in specific ways. When these parts of the brain get injured, a person can in fact be highly aware of what has changed in themselves.  https://en.wikipedia.org/wiki/Hypercomplex_cell https://www.youtube.com/watch?v=v20-E_2bT2c (see ~3 min 40 sec for example of cells response to angled bars) Experiencing My Brain is a podcast devoted to detailed discussion with brain injury survivors about their experiences, problems, and ways that they have found to navigate their lives. These stories are important to help the non brain injured world make sense of the problems that come with brain injury.

Although every brain injury is different and every person is different, there are parallel in our experiences and struggles. Rob describes many creative ways he has found to manage himself and his new issues. He also shares his experiences with exercise, brain injury focused therapy, and how having a supportive and understanding partner are all so important in the long recovery after a brain injury. Experiencing my brain is a podcast devoted to in-depth discussion with brain injury survivors about their experiences, problems, and ways they have learned to navigate life.

Patrick opens up about the inner struggles he has faced as a result of repeated concussions. His multiple brain injuries create different problems that he is acutely aware of. Patrick and I talk about the self monitoring and the fight to even begin to restore what he has lost.  Patrick shares the perspectives he has gained from Dr. Clark Elliot's book The Ghost In My Brain, and some of the cognitive exercises that he has been working on in therapy with Dr. Donalee Markus. Experiencing my brain is a podcast devoted to in-depth discussion with brain injury survivors about their experiences, problems, and ways they have learned to navigate life. "A Concussion Stole My Life" Clark Elliott on TBI and Brain Plasticity https://www.youtube.com/watch?v=9r2pK1j3hQQ

In this follow up discussion with Asher, we get into many more brain injury problems that she has faced and what she has done to try and overcome these strange and difficult issues. The final question that Asher asks is truly important for brain injury and concussion survivors. It is a topic that I plan to follow up on in the near future. Experiencing my brain is a podcast devoted to in depth discussion with brain injury survivors about their experiences, problems, and ways they have learned to navigate life.

I met IyoLu in person at a brain injury support group before covid isolation. He is a deep thinker with clear awareness of what he has had to deal with. The more I got to know him the more I realized he has great depth to his emotional awareness. I have tried to emulate and learn from him. In a separate discussion, IyoLu shared that a major problem he experiences is with regulating his executive function.  Experiencing my brain is a podcast devoted to in depth discussion with brain injury survivors about their experiences, problems, and ways they have learned to navigate life. https://www.youtube.com/watch?v=UC2JgzIVpAA 

Asher is someone I knew before and after her major brain injury but I had no idea what she was actually dealing with. I appreciate her willingness and ability to share about the specifics of her problems so clearly and honestly.  Experiencing my brain is a podcast devoted to in depth discussion with brain injury survivors about their problems and ways they have learned to navigate life.