Rebuilding After Traumatic Brain Injury (TBI)
NOTE: If you’re someone with brain injury and find it challenging to read/absorb information, focus on the text in bold.
If you are on this page it is likely that you, or a loved one, is searching for support to rebuild after brain injury.
Instead of whatever platitudes might normally be offered in your circumstance, allow me to simply say: I’m glad you’re here. None of us have to like all the ways life presents it’s gifts and callings, but it does. Pain and suffering (always) included <wink>. As a brain injury ally, I am glad you are here and humbled that I might be able to serve in some way.
I offer energy work and coaching for people on their journey to rebuild* after traumatic brain injury (TBI). I also do this for people without brain injury. It would be reasonable to say that there is “no difference” in my work across circumstances: whether it’s divorce, TBI, or the simply navigation of life changes, people are rebuilding and reinventing themselves all the time. And yet, the difference is that I have lived experience of TBI that runs fairly deep and, therefore, possess certain conditioning and sensibilities for working with brain injury that others in my position might not. And (according to my clients) I am able to offer a soothing and safe space in a manner that they often can’t find anywhere else, and that seems particularly suitable for those with TBI.
Below I describe:
My background with TBI.
My approach to energy work for brain injury (TBI): and how energy work can support the rebuilding process.
If you have questions please contact me or consider scheduling an exploration session.
My Background with TBI
While I have had several concussive episodes from a career in amateur and collegiate soccer (and other athletic endeavors), I do not have a diagnosed TBI.
However, I live with my husband who does. In fact, he has two major TBI’s about 17 years apart. The first one was not diagnosed and, by all perceptions, he made a full recovery. The second was was impossible not to diagnose and he did not fare as well.
Despite defeating all odds of prognosis by the medical field, today my husband lives with an array of physical and cognitive disability to the extent that he can’t drive or work (among other things). I describe this in more detail in the section below (“More About My Husband”).
What I can say with all certainty after living with TBI, both unknowingly and knowingly for over 20 years, is that the TBI also happened to me:
For starters, both of our lives were blown up when his injury happened, not just his.
As the spouse and primary caregiver (with no children or pets), I am constantly conditioned to the circumstances, needs, and realities of TBI.
Through the lens of energy work,I am aware of the science that demonstrates how our energy and brainwaves are entrained to those around us. So, while I am aware that I have no idea what it is like inside my husbands brain and body, I experience and observe the brain injury happening in my brain as well.
Because of this experience I have a perspective on brain injury is unique to other practitioners and because of how it was expressed through my husband. There are two things you will often hear about brain injury: (1) every brain injury is different (i.e. unique to the person’s brain) and (2) brain injury is an “invisible injury.” I have observed a broad spectrum of this invisibility, both directly through my husband’s particular brain, and the TBI community we now inhabit:
I have seen the true invisibility of brain injury in a high-functioning person - including how the brain injury can be invisible even to the person with the brain injury (especially looking with hindsight at my husband’s first, un-diagnosed, injury).
And I have seen brain injury at “very low function,” and in the gap between “very low function” and “high function.” This gave me tremendous insight into what is happening on this journey, and I think gives voice to something that many people with TBI can’t give voice to because they are either too disabled or not disabled enough. Think of “very low function” as the people who sustain brain injury and never walk, talk, or feed themselves again and will never be able to articulate their experience. Where “high function” refers to people who never reach low enough function and present as “normal” or “mostly normal” on the surface. On that spectrum, just above “very low function,” are people like my husband, who are just past “very low function” but not yet near any type of “high function.” In the case of my husband, this gap allowed him to be having the experience of a “very low functioning” person but be able to articulate what was going on during that phase. Over the years he has gotten better at articulating his experience. For example, there was a time where my husband was not really conscious (blank stare, no memory, not talking, not walking, not toileting independently) but starting to re-learn how to eat. He would do this thing I called “ghost eating” where he would put the fork in the food, but not get anything on it, then lift the empty fork to his mouth, open and close his mouth and then proceed to nod like he was chewing food. It was like a real-life dream, his brain was playing out a pattern that it knew, but my husband wasn’t there. Months later, eating and swallowing were still difficult, but he could now talk. He was able to verbalize how an involuntary action like eating became completely voluntary. He described how he needed to work with his brain to command every single step of eating to the point where eating one bite of food was exhausting: first coordinate getting the fork to the plate and getting food on the fork, then coordinate lifting the fork to his mouth, then opening his mouth and using his lips and tongue to get the food off the fork, then use his tongue and move the food to one side to chew, then move his jaw to chew, then perhaps move the food to the other side, then know if the food was chewed enough to swallow, then position the food so it could be swallowed, and then try to perform the mechanics of swallowing (which would invariably cause him to choke - and still sometimes does). In fact, more than a decade after my husbands first, un-daignosed, brain injury he said at the dinner table one day, “I think I’m allergic to gluten or something. I have a hard time swallowing the food. I have to pull the collar of my shirt away from my throat.” So he started talking to ND’s and Functional Medicine doctors, doing tests, and trying protocols. Yet, in hindsight from today, where his swallow damage from brain injury is more pronounced, it is clear that back then he was having swallow issues from brain injury, but that never occurred to us or any other doctor that was what might be happening. Most people who are much lower functioning can’t explain that this is part of what is happening inside of them. And people who are higher functioning might not realize how brain injury is impacting them. Now my husband can, and you wouldn’t believe some of the things he illuminates about the brain injury journey. I’ve seen him speak at support groups and I watch other participants have “light bulbs go off” because he’s articulating something that was too elusive for them.
My Approach to Energy Work for TBI
I offer energy work (in the form of Reiki and sound healing) and coaching for people on their journey to rebuild after brain injury. Because of how I have been conditioned (aka “trained”) by living with my husband’s multiple TBIs for over 20 years, I possess certain sensibilities that others in my position may not.
Here’s my best attempt at articulating some of those sensibilities:
I understand how arbitrary brain injury can be. How a person with brain injury will seem to be able to do certain things but not others that seem to fall in the same category (e.g. you can’t see across a room but can see a piece of dust on the floor). And how one day something is accessible (e.g. speech) and the next moment it’s not. In a world that doesn’t tolerate ambiguity very well, this is hard to navigate with others, never mind trying to understand yourself and capabilities in the new paradigm of brain injury.
I understand how unhelpful the medical community can be. Dominant culture, and the industrialized medical system it has produced, are both necessary to survive a brain injury and mostly useless to living with one. Worse is that many (not all) allopathic doctors (i.e. MD’s, and other doctors that are products of the industrialized system, e.g. DO’s), will discredit and/or villainize other medicine practices (e.g. homeopathic, naturopathic, ayurvedic, traditional Chinese medicine, energy work, etc.) despite the fact that they are proven over thousands of years and, all of them, evolutionary predecessors to allopathic medicine. The truth is my husband would have died without modern medical intervention, including pharmaceuticals. It is also true that, apart from keeping him alive, that the medical system has been, at best, useless in supporting us in rebuilding and has mostly been wrong, gotten in the way and, sometimes, acted unethically.
I am attuned to the delicacies of capacity and pace. The best analogy that I’ve heard to explain brain injury is that of the battery: you think of the brain like a battery. People without brain injury have access to a battery that has large capacity and daily tasks don’t require as much from the battery. People with brain injury have a battery with less capacity and daily tasks (often) require more capacity from the battery. So you have both a smaller battery and greater demand than before. And there are so many moving parts to this delicate balance (e.g. how much effort the day before, how much sleep, diet, etc.) and I understand how arbitrarily and how quickly the battery can loose it’s function.
I am experienced in designing the relationship and creating accommodations that honor what is needed now. You could say this “equity” and “inclusion,” but with all the “DEI noise” (these days) I hesitate to use that vocabulary. There are so many environmental and relational considerations to make with brain injury and they are frequently shifting. It’s not something that can really be codified into a set of “rules” for people who don’t have real exposure to this. Suffice to say that an accommodation or agreement that may have been needed last week, yesterday, or a minute ago, might not be the same as what is needed in the present moment. I’m not saying things don’t get messy, but rather articulating how I have a radar that tracks a certain way, is usually quick to identify when redesign is needed, and how to proactively approach things, even when they get messy. This includes both the person with TBI and any caregiver that might be involved.
So, how does all of this translate into my work with coaching, Reiki, and sound healing?
First, and perhaps foremost, it has helped me develop skills as a space holder. Creating the container and conditions for energy work is as important as the work itself, and all of my experience with TBI is applied to every space I hold for any client.
And It has helped me develop a unique view into the nervous system for approaching energy work. Our nervous system is our channel for energy (aka life force, qi, chi). Tending to the nervous system with modalities that balance hemispheres of the brain, assist in clearing blockages and building capacity in our channel can be of great support to anyone, particularly those with brain injury. It’s really as simple as that. And the science and art of practicing this does deep.
I’m constantly searching for approaches, resources, and other practitioners that can help clients be more effective in the results they achieve.
To learn more:
More About My Husband
I’ve added this section because many people have asked for more information about my husband and his journey.
As I mentioned earlier, my husband has sustained two major TBIs about 17 years apart. He has had more than two if you include additional less severe head traumas (some with loss of consciousness).
The first major TBI occurred in 2001 due to a ski accident in Tahoe. It was not officially diagnosed as TBI. My explanation for the lack of diagnosis is:
Back in 2001 the medical system didn’t assesses, recognize, and diagnose TBI the way it does today.
He had “no pulse and no breathing” when medics made it to the site. His internal injuries were severe: both calcaneus (i.e. heels) were shattered, jaw and orbitals were shattered, and sinuses had collapsed. His basic survival and putting “humpty dumpty” back together were the main focus. Anything that may have been a symptom of TBI were attributed to things like prolonged medicated induced coma, etc.
Through a number of true miracles he also ended up making a “full recovery” from that injury in that he was eventually able to live independently, go back to work, and return to almost all of the activities he loved (long distance running wasn’t possible because of the heels).
The second one occurred in 2017 when a car struck him while crossing a pedestrian crosswalk. Like the first injury it was a near-death injury. The doctors weren’t sure he would make it and said, if he did, they weren’t sure how well he would fare. Though he defeated all odds, he did not fare as well. I attribute this to having the previous injury and there was evidence of this along the way that no doctor could really speak to.
An overview of this injury:
He was diagnosed with diffuse axonal injury (DAI). NOTE: you can read more online about the difference between focal and diffuse injuries; I’m not going to get into that here.
His consciousness progression was “slower” than doctors were accustomed to (I attribute this to the previous TBI, the brain had less capacity and needed more time). His “lack of” progression remained cause for concern and (in hindsight) colored the perspective of all the medical professionals we dealt with. Most prognosis had him living in a “skilled nursing facility” for the rest of his life.
He was in the ICU and acute neuro-care at the Level 1 trauma hospital in Seattle for 4 weeks before being transferred to Craig Hospital (by miracle). We were at Craig for 2 months and I believe this was one of the many major factors that contributed to where he is now.
At the time I am writing this post, my husband is 8.5 years post his 2nd major TBI in 2017.
However, now with hindsight from today after his second TBI, I can see his brain injury back then. I can now also see how due to his physical prowess, athlete mentality, high intellect, and ruthless will and positivity how he was able to make this “invisible injury” invisible to everyone, including himself.
*FOOTNOTE
I choose the word “rebuild” carefully and for the following reasons (that seem important to share):
Brain Injury is incredibly nuanced, and our language for talking about it needs to address this fact.
The word “rebirth” could connote something I don’t intend.
The words “recovery” and “healing” can be misnomers in that they imply “getting back” to something. If I have learned anything, I have learned the only way in life is forward. There is no “going back."
Perhaps with a better vocabulary I could come up with a better word, but “rebuild” feels best for now (contact me if you have suggestions for other words).