This is part 2 of 2 part discussion with Dr. Maria Romanas, about her sever TBI that she had when she was 18 years old, and her journey to improve, learn how to manage her problems, and her education through an MD/PHD program. Across her story no one spoke about "brain injury," so she learned to push herself and deal with invisible problems without knowledge of actually having a brain injury.

Maria describes her accident, the grief of loosing a close family friend, and how her mother learned to "push her gently" to progress and help Maria regain what she could. Maria describes the ways she was driven to be the academic star she had always been, while at the same time facing strange inabilities with executive function and other capacities.

Maria is clearly brilliant. Yet throughout her education and career, her difficulties have often been misunderstood and attributed to stress, parenting, or forgetfulness, rather than recognized as bran injury problems. She also learned how to manage and improve her abilities in unique ways like "getting her cues" and managing her symptoms.

This story is both inspiring and education for anyone trying to better understand brain injury, and as a doctor Maria shares a lot of thoughts and ideas about brain injury (both in parts 1 and 2 of this discussion).

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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.

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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 goal of the Experiencing My Brain Podcast is to interview people about their invisible brain injury problems. In this recording Dr. Maria Romanas MD/ PhD interviews me.

I share about my TBI experiences and try to communicate the ways my symptoms manifested. I appreciate Maria's interest in my history and progress, because brain injury is so hard to deal with and so often misunderstood. In the first decade I was dealing with alexithymia with brain injury, so feeling anything about life with a brain injury was difficult if not impossible. I appreciate how Maria acknowledges that aspect of my process (most people don't get that). This discussion is evidence for me, proof that I have been through something most people don’t have a clue how to think about.

In part 2 of this discussion, I interview Maria, she lays out a lot about her brain injury journey, how she worked to improve after a crazy accident, what her main problems have been with a brain injury as she pursued her PhD and then MD, and so much more.

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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.

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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.

In this discussion with Cynthia we both share this analogy of the 3D layered web for what brain injury feels like.

What that 3D layered web means, in my opinion, is that with brain injury your internal states have many brain injury problems that interconnect and influence one another and every moment of life. The layers are the different problems, the web is the interconnection. and it's 3D because it impacts so much of your internal states.

Cynthia explains this interconnected web as much as is possible, and she shares a great deal. For example what her brain injury problems were like, what "self care" looks like in terms of the importance of sleep, rest, proper diet, and exercise but of course this is "nervous system" care with brain injury. That distinction is pretty clear in this recording.

Cynthia explains her views on these factors and how self compassion and feeling her emotions when she needs to let that pressure out is a great perspective that can help others learn how to manage all the hardship that comes with brain injury.

Cynthia has a podcast called Moms With Concussion. She explains how she has learned to handle so much of brain injury as a single mother. I did an episode with her, we get into a lot of “unique” to brain injury topics. Here is a link to that discussion:

https://podcasts.apple.com/ca/podcast/navigating-the-complexities-of-brain-injury-with/id1728525928?i=1000729311455

Cynthia and I also discuss the evolution of brain injury and she explains, how she made effort to learn ways to manage and improve her concussion problems. That effort and concussion education is what helped shape her efforts to improve, it wasn’t just random that she got better, she had to work towards that goal.

This process that leads to improvement over time is something Cynthia lays out, and I agree with her strategies based on my experience. That is an important take away for anyone thinking about brain injury and what factors are important to help improve over time.

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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.

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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.

Maria is a severe TBI survivor that works as a therapist to help other brain injured people. She is also the co-host of the brain injury podcast called TBI TMI. Check out her podcast with Zach here:

https://www.youtube.com/@TBITMIpodcast

Maria has had a long recovery from a horrible accident and shares a great deal in this discussion, ways to think about unique to brain injury problems including how hard it is to function in the early years, the value of routine, the value of doing 50% of what you plan (to avoid fatigue and over-exertion). We discuss her internal emotional state, feelings like her mind was not her mind, and her body was not her body, and so many other brain injury problems that are truly hard to imagine.

Maria's story emphasizes the importance of support and how seemingly small efforts in the beginning of one's journey can grow into larger abilities. Also the importance of breath work, working towards independence, and just getting a few things done each day. These efforts are immensely challenging after a brain injury.

We also discuss the progression and perspective changes that come with years of work to improve and make sense of one's own problems.

Maria did a great talk in my Building Brain Awareness talk series about sensory issues and how they interact with other brain injury problems like interaction with other people, and advocacy for brain injury. The interaction of brain injury problems is something that often goes unnoticed. Check that talk out here:

https://www.youtube.com/watch?v=xhbPRxF76ig&t=3212s

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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.

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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.

I met Zach through his brain injury podcast that he does with Maria called the TBI TMI podcast. https://www.youtube.com/@TBITMIpodcast

In this discussion, Zack shares the details of his brain injury, he explains the various sensory problems he has to deal with and all the other life, work, and support problems that come up because of brain injury.

The title of this episode - Self Talk, Extra Filters, and the Value Of Finding Someone Who Gets It - refers to all the ways that Zach has had to adapt and learn how to manage his brain injury problems. We discuss what he has learned from his podcast cohost, Maria who had a sever TBI years before Zach.

I was a guest on the TBI TMI podcast and we discussed parenting challenges with brain injury.

https://www.youtube.com/watch?v=oWniiawxtng&t=258s

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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.

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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.

Michele is a brain injury survivor that has had two brain injuries with very different symptoms. She shares about these problems and much more in great detail.

Michele created a large scale support network and worked tirelessly to support people with brain injury. For over a decade she truly lived on the front lines of brain injury support. There are multiple episodes on this podcast where the person interviewed mentions Michele and how she helped them in detail, including Julie in Episode 10, David in Episode 26, and Janet in Episode 27. Michele has ways to help others in need and deal with the overwhelming burdens of brain injury in unique and supportive ways that last. I think people can learn a lot from her when it comes to helping those with brain injury.

Yet I watched Michele get into difficult conflicts with various brain injured people and other support groups run by un-brain injured individuals. Her attempt to connect with other brain injury groups often led to arguments and conflict, until it became fighting and anti-support. This type of problem is something I have observed over multiple brain injury communities and across several different states. It is a problem that comes with brain injury and the people in need are the ones who suffer ultimately. Which is why it is so important that Michele is willing to discuss such predicaments. This will be part 1 of a 2 part discussion.

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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.

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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.

Brain injury is invisible and every brain injury is different so it’s not wonder this problem is so drastically misunderstood. If it’s your brain injury that is injured the problems are so horrible and the constant ways that other people don’t understand is a major burden.

This is a compilation episode of 12 good examples if brain injury problems, explained by the person with the brain injury. Most of these examples were used in 2 talks I put out on YouTube, proposing a framework for brain injury and the "nature" of brain injury problems (links to the talks are below).

- If you are brain injured and trying to find ways to get help and to get the people around you to gain some sense of what you are dealing with, listen to this episode, share it with others.

- If you are not brain injured but trying to wrap your mind around this condition, please listen to this recording and share it with others.

Talks on a framework for brain injury:

https://www.youtube.com/watch?v=XwE7Cb-_eZk&t=1546s

https://www.youtube.com/watch?v=87rzDj93nsE&t=19s

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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.

Finding Everyday Magic - A journey Of Hope And Healing Through Nature, is a brain injury book by Anessa Arehart.

You can buy the book here: ⁠https://findingeverydaymagic.com⁠

- Check out photos from Anessa's ongoing phototherapy nature walks here: ⁠https://www.instagram.com/finding_everyday_magic_/⁠

Anessa's book is easy to read and full of amazing pictures. She describes in detail, her brain injury inner experiences and struggles, how she found help and support that worked for her, and how she figured out ways to use nature, "phototherapy," and other forms of "effort" to work to regain and improve her brain injury problems over time.

This podcast is all about taking a deep look at the strange ways brain injury problems are experienced (when it's your own brain that is injured), and also what helps to improve, regain, rebuild what has been injured. I appreciate Anessa's book and her willingness to share so much in this discussion.

The journey she shares is a great example of how every brain injury is unique and misunderstood, but things can heal and get better, and what it takes to do so.

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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.

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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.