Experiencing My Brain: Recent Episodes

Daniel Avesar PhD

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.

Unbrain injured simply means not brain injured.

David and I met in a support group in Seattle, WA. We relate a great deal about the validation that a support group offers and what it's like to live with and manage so many invisible aspects of brain injury. The details are in the discussion.

I like this episode because we get into invisible aspects of this condition in a way that can help others think about brain injury.

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.

Disclaimer:

The views and opinions shared in this podcast should be looked at as the views of brain injury survivors and not as medical or clinical advice. Always seek the advice of a qualified health care professional with any brain injury problem.

This is the second podcast recording with Nick. Nick made the cover art for this episode (https://linktr.ee/nicomedia).

Thrown away after a brain injury is a horrible abandonment that happens to many people after they are brain injured. When Nick shared this picture with me I was struck by the pain, the faces, the guy throwing out the trash bags. I asked Nick to make that guy a doctor, and instead he stuck that “MD” badge on his chest.

Here is the first podcast with Nick.

https://podcasts.apple.com/us/podcast/experiencing-my-brain-episode-15-injury-to-what-makes/id1596998070?i=1000592945732

After the first recording I wanted to speak with Nick much more about his loss of self and using philosophy to make sense of brain injury problems. Nick had bilateral subdural hematomas around his parietal lobes and he had a midline shift. Depersonalization, the loss of self is a complicated internal problem, his description and efforts to make sense of what changed in himself. It remind me of my loss of internal self.

Here is a neuroscience seminar that compliments this podcast about the brain networks that create self, Nick and other brain injured people in the audience asks some excellent questions. Together the brain science and listening to what people have to say helps illustrate what deporsonalization is like, and what happens in your mind once you have injured the networks that create self, in the brain.

https://www.youtube.com/watch?v=YBUNOLfom6A&t=4s

Nick describes being thrown away by the people around him after brain injury. I have met many people who get abandoned by their families and are left with no support. This is a major problem. Without support how can a person work to improve themselves?

Hopefully, the people around brain injured individuals can learn to listen to what each brain injured person is dealing with, to accept that the person has very real invisible challenges, and that things can improve with the right help and support.

Hopefully the people around us can learn to be be more willing to be supportive.

Unfortunately, finding the right help and support is also a problem.

Cognitive loss with brain injury is a unique symptom where the process of thinking (in all forms) just doesn't work. Not only is that type of injury strange and misunderstood, but the nature of the "effort" and "work" to regain, redevelop, and relearn how to think has to occur very gradually. It is a difficult and time consuming process on the scale of years.

Linda has a great blog called - The Brain Fairy - Living with Brain Injury. She writes about the nature and unique details of brain injury to help build awareness of what these problems are like. Check out her content with these links:

⁠https://www.facebook.com/TheBrainFairy/⁠

⁠https://thebrainfairy.com/?fbclid=IwZXh0bgNhZW0CMTAAAR26m6Ss4qasqkZft19wDmJo9QjCZU4Upa3X6l14WolREabVONN1sSw-aUE_aem_U1Q864eEWcfToa_iWfppBg⁠

I love this discussion for multiple reasons.

First off, I also lost cognition. That is a symptom that only some people have with brain injury. I have found a handful of people that even know what that problem is like. I thank Linda for sharing so much about this type of brain injury symptom.

Second, brain injury is not just one problem. There is an interaction of symptoms. Brain injury problems influence one another and evolve over years. This discussion captures that complexity.

Lastly, the effort that it takes to regain, rebuild, redevelop, and relearn aspects of what was once automatic like cognition is difficult to do and takes years.

People discuss "neuroplasticity" as a process that helps after brain injury but it's the effort to "work on" what was lost that drives the neuroplasticity, and not the other way around. In this recording, the details of that type of effort get spelled out.

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 others make sense of the problems that come with brain injury.

Disclaimer:

The views and opinions shared in this podcast should be looked at as the views of brain injury survivors and not as medical or clinical advice. Always seek the advice of a qualified health care professional with any brain injury problem.

The discussions across this podcast involve people sharing details of what they are dealing with, with brain injury. Of course we are talking about the invisible problems.

Debbie and Scott reached out to me to talk about this stuff because they are seeing the similarities and complexity of such issues. I thank them for reaching out and being so willing to share their ideas, observations, and struggles.

I greatly appreciate that they even listen to my ideas about brain injury. Here are those ideas explained across a few talks. In the future I intend to condense and simplify these concepts moreso. The invisible problems with brain injury are vast and different between each person, but the ways they overwhelm and limit basic capacities are similar. Also the work to improve and not get pushed into the fatigue are relatively similar.

https://www.youtube.com/watch?v=wSJOpPrnO1o

https://www.youtube.com/watch?v=n5-EUBU7HAA&t=73s

In the second link and across multiple episodes of this podcast I get into details of learning to not push your limits with brain injury problems and life in general. Many other brain injury groups support this idea. I used to call this idea the "60-80" rule, in which you learn to push yourself to "60-80" of your limit. But everyone immediately goes to 80%. That is hard do be because there is no clear limit, there is no way to know until you have gone too far. So learning to avoid the limit completely becomes a way to "manage" your life and make room for the brain to rebuild, regain, and redevelop. Of course this takes years.

Here is another seminar on fatigue with brain injury that gets into the same concepts with a "50%" rule.

https://www.youtube.com/watch?v=HKD3VH_zUGE&t=32s

Two more podcasts in which learning to not push the limit come up in very clear terms.

https://podcasts.apple.com/us/podcast/experiencing-my-brain-episode-12-leveling-up-discussion/id1596998070?i=1000582256917

https://podcasts.apple.com/us/podcast/experiencing-my-brain-episode-9-healing-laminated-with/id1596998070?i=1000559300707

Lastly it's important to recognize that many brain injured people without support are forced to their limit on a regular basis. This is a major problem, that needs to be addressed.

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.

Disclaimer:

The views and opinions shared in this podcast should be looked at as the views of brain injury survivors and not as medical or clinical advice. Always seek the advice of a qualified health care professional with any brain injury problem.

Leslie and I met at the first brain injury support group I ever tried. Listening to her stories, challenges, and brain injury problems, especially the "misunderstanding" that she faced over decades, helped me realize how people can be so different but still face similar invisible hurdles because of the nature of brain injury.

That was one year before Covid isolation shut down all the groups that met in person.

Leslie and I were also part of an online support group called Synapse, at the University of Oregon. That group was great because the undergraduates who ran it were very careful to listen to the needs of the brain injured members and they helped Leslie write "the blurb" to help doctor's gain a better sense of her needs, strengths, and limitations.

When Leslie and I recorded this discussion it was months after the blurb was written. I was eager to "capture" all the things we haddiscussed over the years. Of course, that was not really possible.

I appreciate what she shares, she explains the ways that anxiety is a part of her brain injury, but the brain injury problems (which are the source of the anxiety) are rarely discussed or noticed. She is very clear about how brain injured people can assume that other brain injured people are dealing with problems "like their own," when in fact there are drastic differences. Leslie is indeed an "old-timer" with brain injury as she puts it, she has learned a lot, and people can learn a lot from her about this type of problem.

Judgement, assumptions, and misunderstanding surround brain injury, but if people listen and keep an open mind about the nature of these types of problem, a lot can be done to improve each individual's situation.

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.

The views and opinions shared in this podcast should be looked at as the views of brain injury survivors and not as medical or clinical advice. Always seek the advice of a qualified health care professional with any brain injury problem.

Brain injury problems are truly hard to explain, but a person can become aware of, make-sense of, and navigate such problems. Does it even help if you can explain the unexplainable problems? Not if people don't listen and don't believe you.

I met Moz in a support group about 2 years ago and felt the need to connect with her. Moz’s inner navigation skills, abilities to classify, characterize and act mentally to compensate for her invisible injures is remarkable. She has had not had support, and many times the opposite of support since her TBI.

We recorded this discussion 40 years after her brain injury. Moz has become my friend and I thank for that. She is accurate about the details of her brain injury problems, the ways people judged, misunderstood , and have mistreated her. We need to listen to Moz and others like her to have the right discussion about how to support and help people with brain injury.

Moz talks about her brain injury problems in “specific ways”. It’ s those “specific ways” I see as brain injury parallels and describe at the end of the episode and below:

The “moment to moment nature” of brain injury problems - Moz talks about this ‘level’ of how reality shifts and everything is so different, of course you are stunned and altered by this moment to moment shift. It is hard to explain, and not just a matter of hyper- vigilance, but somehow reality is much harder to process at a moment to moment level. I think many brain injured person have this type of issue.
The lack of words for it - Brain injury is not explainable, especially when you do not have the energy to deal with, or ‘grasp’ your problems. Years and decades with the same internal problems helps form an accurate perspective.
The inner monologue/ narrator - Moz’s inner narrator follows her brain injury problems like the memory issues and others she describes. She is accurate in her inner assessments as I was, but again it is hard to explain and others do not believe what you have to say.
The relearning curve - I have no words for this long process but ‘relearning’ is not the same as learning. It involves developing tolerances for what you need and dealing with brain injury problems plus all the other problems that life throws at you. But the brain injury problems themselves are always around. Relearning at times means regaining capacities, and other times means working within the confines of your core brain injury problems to get things done despite your limitations. In all cases it is difficult and consuming (like it takes internal work in a way that is hard to explain) but the relearning process can improve over time. This discussion captures some ideas about relearning.
Antisupport -The extreme lack of support or anti-support Moz describes can be summed up as misunderstanding that leads to abuse and trauma. I have met many people with similar stories. Dr. Karen McAvoy, PsyD. spoke about how healthcare providers misunderstand and misjudge brain injured people leading to "punitive" treatment of these individuals, and what perspective change is useful to tackle this form of misunderstanding.

https://www.youtube.com/watch?v=nSQ2xr-vD3Y

Below are 3 seminars with the BIAWA where I lay out how I think about brain injury. Moz and I talk about this stuff all the time and I hope we can record more discussions to bring people “up to speed” about our interpretations, agreement, and disagreements on these shared characteristics of brain injury. Check out the talks below.

https://www.youtube.com/watch?v=r3E9C1RUjyg&t=126s

https://www.youtube.com/watch?v=Mj7WxiSiBWs&t=66s

https://www.youtube.com/watch?v=n5-EUBU7HAA&t=64s

Nancy is a good friend, we have known one another for several years, and met through the support groups. She had a sever brain injury when she was 3 years old, we discuss her issues and history in the first episode of this podcast. Much more comes up in this discussion

https://open.spotify.com/episode/11WjpW7xaIlmHKw2QJbKau

Nancy probably injured her neck in her first fall and that resulted in limited cerebrospinal fluid flow (CSF) to her brain, that problem created a very specific feeling of pressure in her head. That pressure feeling, and how it interconnects with other problems are good examples of the unique and interconnected nature of brain injury problems.

Nancy needed an MRI scan done when she was not laying down to show the CSF flow problem, for over 60 years she did not receive the right help and had to search until she finally found a clinic that runs the MRI while the subject is standing up. She had to travel across the country alone and finally had the first surgery, probably she will have a second surgery, but with that one surgery she has experienced a great deal of change and improvement in her brain function.

While I was editing this episode I attended two brain injury talks that capture the types of problems that Nancy describes in terms of the harsh misunderstanding and judgement about her problems:

First was a presentation by BIAWA in which Maria Dalbotten a mental health therapist spoke about the impacts of sensory sensitivity. Maria said (51 minutes into this talk) “When a person is self advocating, it can be tempting to explain why we need something." She said “It seems important to get other people to understand what you are dealing with,” but, “don’t focus on getting the health care providers to understand. Instead of the story, think of what do you need.” After all“We are the ones that know what we need, the world around is not going to understand what we are dealing with.”

https://www.youtube.com/watch?v=UzeL5pkauqs&t=35s

-Second was a talk in the building brain awareness (BBA) series. Dr. Karen McAvoy, PsyD. Karen spoke about the nature of brain injury problems and about when healthcare providers misunderstand and misjudges brain injury (~47 min into the talk) they adopt a "punitive" attitude towards the brain injured person, as well as how to reform that attitude.

https://www.youtube.com/watch?v=nSQ2xr-vD3Y

This discussion with Nancy perfectly exemplifies both these issues and despite every brain injury being different, the way brain injured people are treated is often the same and needs to be changed. In addition to the misunderstandings Nancy explains in great detail the nature of her problems and how they changed with the right help, diagnosis, and surgery.

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.

The views and opinions shared in this podcast should be looked at as the views of brain injury survivors and not as medical or clinical advice. Always seek the advice of a qualified health care professional with any brain injury problem.

This is a great discussion about brain injury. Jenna shares about her overwhelming and strange problems, the fatigues, the difficulty finding help, the evolution and changes of her problems over time, also how isolating brain injury is when you are consumed by problems that are invisible to others. With the right help and interpretation of what she is dealing with, Jenna has worked to improve and regain her life back. We get into detailed discussion of the 'baby step' nature of working to restore what was once automatic in your mind, and how hard it is to explain all the bizarre brain injury problems.

In addition to "work to regain" her injured brain capacities, Jenna shares a great deal about her journey of healing and ways she has learned to be realistic and positive about her setbacks and not pushing her brain injury limits. The self caring and gentle way, she has adopted, for and towards herself is inspiring.

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.

The views and opinions shared in this podcast should be looked at as the views of brain injury survivors and not as medical or clinical advice. Always seek the advice of a qualified health care professional with any brain injury problem.

In this discussion I speak with Dawn for the first time. Dawn and her 15 year old daughter had brain injuries in the same automobile accident. Her account is both heartbreaking and inspiring as her and her family have faced many challenges and continue to live, love, and work to manage the unique problems that come with two brain injuries. She has found purpose and meaning in helping others with brain injury by promoting awareness of the difficult and personal aspects of this condition.

Dawn has a blog about brain injury and has written an amazing book: A Miracle a Day, One Day at a Time: Hope After Traumatic Brain Injury. Her and her daughter continue speaking to young people to raise awareness to help prevent brain injury from happening, and to help brain injury survivors, their families, friends, and caregivers know that they are not alone.

Please visit the links below to see her work:

https://dawncorbelli.com/

https://www.amazon.com/Miracle-Day-One-Time-Traumatic/dp/1098386396/ref=sr_1_2?crid=28FY7N31XZL1C&keywords=dawn+corbelli&qid=1659909500&sprefix=dawn+corbel,aps,408&sr=8-2

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.

Chris is the president of the Hypertrophic Olivary Degeneration Association (HODA), a group she started after not being able to find the right help, resources, support, and answers for her questions about HOD. She told me that she relates with a lot of the problems that come up in the other episodes of this podcast. It is fascinating how HOD symptoms can be so much like other brain injury problems, and like with brain injury there is plenty of variability between each person.

I appreciate her openness to share about her experiences and her attitude towards helping others not have to deal with the difficulties she is still facing. Her story is a good example of someone reclaiming their life even with a rare brain disease and turning their energy towards battling the disease itself. I am on that same page.

https://hodassoc.org/?fbclid=IwAR29KYZWtFK26YnRKGAM0f8bp9lHMqjGzpsHjhyZ7F8ISalvzag9Za9pm4w

https://www.facebook.com/HODAssoc

This discussion with Melanie gets into a bunch of topics, what she describes triggered a lot in me, both emotionally and rationally, as I am still trying to make sense of that happens to ones' self with a brain injury. Thank you Melanie for opening up so much about your struggles and the craziness of your journey to restore what you lost.

Below is a list of topics that come up in this interview, like “parallels” that come up again and again in discussion with brain injury survivors.

- Brain injury comes with many problems - Most people with a brain injury have a list of problems, these problems interconnect and influence one another. Having many problems is important to recognize because any work and effort on one problem needs to factor in the other problems. Make sure to add the fatigue with brain injury, that compounds the other problems more-so.

- Support from other brain injury survivors in crucial. With out it we are left with no one around to validated or acknowledge our experiences.

- Misunderstanding is a major problem with brain injury. There are different forms of this misunderstanding that come up in detail in this episode. There needs to be a large scale re-education and normalization of what problems come with brain injury in order to deal with this problem.

The National Academies Of Sciences have a report that addresses this misunderstanding.

https://nap.nationalacademies.org/catalog/25394/traumatic-brain-injury-a-roadmap-for-accelerating-progress

I also did a presentation on this report: https://www.youtube.com/watch?v=wSJOpPrnO1o&t=1s

Melanie describes level after level of misunderstanding and inadequacy that she faced, she also did get some good help which still had gradations of misunderstanding, important to note.

- Time - Rebuilding and restoring of inner capacities takes time on the scale of months and years.

- Brain Injury problems evolve and change - These changes are a complex topic that seems to come up in every discussion and Melanie's journey is no exception. From not even being able to make sense of the problems, to the "realization point," and years of work to restore her mind and body connection. Learning about this evolution can help others recognize that people with brain injury will require flexible support and have changing needs over time.

Hopelessness - The combination of brain injury problems plus despair, judgement, and anti-support from doctor's and those who are supposed to help can lead to a "downward spiral," this interview spells out in detail how this storm of problems can lead to such hopelessness, a problem that effects many with brain injury
Breaking Reality - The brain is constantly creating our reality. If people accept that these systems exist (see talks below), can get injured, and that we are able to in-fact be aware of such changes, it can help at least acknowledge some of the bizarreness with brain injury.
Here is a podcast on the systems in the brain that do ‘reality monitoring’ and how they may actually create our subjective experiences. https://brainsciencepodcast.com/bsp/2022/196-lau
This talk focuses on brain research of how the cortex predicts our reality: https://www.youtube.com/watch?v=_2IV0wcmgsk
Last topic discussed in detail in this interview is how learning to not push yourself to the limit can help brain injury recovery in a graduale, subtle, but consistent manner. It's like learning to avoid the limits makes '"room for recovery."

I first got in contact with Nick through one of the many TBI support groups and Facebook and now we communicate pretty regularly. He is working hard to spread awareness of what his brain injury experience has been like and to build resources for others. Here is Nick's Blog, Archaeology of mySelf: Recovering from a Brain Injury.https://medium.com/@Niknello/archaeology-of-myself-recovering-from-a-brain-injury-e2909b96f86f

The brain networks underlying different aspects of self are pretty well known. https://en.wikipedia.org/wiki/Neural_basis_of_self

A book that get's into the ways the brain creates the self is Antonio Damasio's Self Comes to Mind: Constructing the Conscious Brain. He writes about ways he postulates the brain creates self and mentions that it is something that the brain does which people often overlook or don't think about. It is not a book about brain injury but it stands to reason if the brain creates the self, then that mental capacity can also be injured. I hope this episode helps others recognize that when that happens, it often comes with awareness of the internal changes.

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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.

This impromptu recording with Venesuia is short but so full of important ideas and perspective. I am thankful that we were able to capture this TBI centric discussion.

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 friend and person I have gotten to know in an effort to talk about brain injury problems. He and I speak every week or so. He's also in EMB episode 13. For sure I have had more discussions with him than anyone else about brain injury stuff.

Looking back on these recordings I am try to get him to talk about the stuff we had already gotten into over hours and hours of discussion in the the support group, so the discussion sometimes repeat and some topics present themselves in bits and pieces. I agree with a lot of what he is describing as I have had similar, but different brain injury experiences. There is a lot to talk about.

Audio quality is not so good at times, I was recording for the first time in these discussions. Sorry.

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 like this episode because it's a good example of two strangers with brain injuries finding ways to share about the unique aspects of this type of injury. I met Tanya in one of the post concussion facebook groups and it took a long time until we actually spoke. We get into a lot of topics, like the strange nature of brain injury problems, making sense of such problems, managing the changes, and more. Leveling Up is just one of many issues we tackle.

"Leveling Up" is a feeling that all of a sudden some parts of you, that got lost due to brain injury, have returned. It is hard to explain, but a crude comparison would be with a phenomenon that is known about in language development. There is a 'language explosion' that has been documented in children as they learn how to talk. After a child knows about 500 words, there is suddenly an explosion of language ability, where language becomes effortless and easy to use. In a way that is like Leveling Up, except the inner factors that change are not as clear-cut as language. In fact it is really hard to define what was lost and then returns.

In my experience and Tanya's, Leveling Up seemed to happen over and over again. In both our cases, with each "Level", more of our cognitive, memory, and other hard to define inner capacities returned, and remained.

Below is a link to Tanya's book: MISUNDERSTOOD: THE IMPACT OF GROWING UP OVERSEAS IN THE 21ST CENTURY. I think her expertise in promoting support and ways to help people not feel misunderstood can be extrapolated to help brain injury survivors find supports and finds way to feel less alone.

https://misunderstood-book.com/

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

michele@globalbia.org

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.

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 Nancy through one of the online brain injury support groups. She had her first brain injury when she was 3 years old and shares a great deal about the unique challenges she has faced and the perspective she has developed.