Experiencing My Brain Daniel Avesar PhD

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.



The ideas I share with Jenna, and fit into the end of the podcast are brain injury ideas I have been trying to communicate for a while. This podcasts gets deep into the bizarre aspects of brain injury, which is great. Please check out the talks below for those more general brain injury ideas.



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

https://www.youtube.com/watch?v=bpDS5R6JkZU&t=33s



Brain injury is complicated and I actually don't agree that every brain injury is different.

We need to fit together 'what is known about,' and 'what is experienced,' for 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.



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