Is There a Self After TBI?

     There is a terminology for children who grow up with siblings who have disabilities. I didn’t know about any of this research until a few years ago. But this terminology is glass child syndrome, because as children our needs are looked through to attend to our siblings’ needs. We become self-sufficient, responsible, mature, and keep our own struggles private (not at all fragile). Some people develop resentment. I did not. As I began to develop consciousness, I was surrounded by love and compassion, so that was all that I interpreted my role as. I didn’t see my role as different from anyone else either. I became the peacemaker, the person to step up and help every second. I embraced responsibility as an opportunity for growth. I was the person who noticed when something was missing and fixed it immediately. I had an extreme spiritual conviction and a deep love of learning. I carried my own and offered to carry for others everywhere I could – this was not out of resentment, fear, duty, nor obligation, but out of unconditional, unapologetic love. This is the only way that I understand the world in which we live.

              And then, at sixteen years old, I struck a backhoe, with my head, at a force of approximately 40 mph. I should not have survived; I did. But now that it’s sixteen years later, I wonder if that’s all that happened – just my physical survival. The second time I began to develop consciousness, everything I ever knew was put under attack. Physically, my brain was still healing from having a GCS of 3 and the fire inside because of it. Cognitively, everything went from 100 to 2 in a fraction of a second. Socially, my world went from everyone to no one. I was spiritually wounded for a long, long time. I truly believed that everyone operated from a “relational” or unconditional love mindset, and I had no comprehension of transactional mindsets. To this day, I still only understand transactional mindsets “on paper.” I can’t even fathom the concept of doing something so that someone else will do something of equal or greater value. Because I am a “glass child,” and I kept everything private, others didn’t agree when I would claim to be the person I truly believed I was before the accident. Because this happened for years, and years, and years, before I even understood anything about the syndrome or about the kind of changes that the specific damaged parts of my brain can cause, my own self-identity has completely fractured. Which means, the second time I began to gain consciousness after the coma and relearning everything from breathing, swallowing, walking, talking, etc, I started to question if the first time actually happened, or if it mattered, or if I was making at least parts of it up.

              May 12, 2010 my life was saved. But my selfhood was not.  My body eventually regained alertness, consciousness, thoughts, movement, etc. But my identity has never made sense post-accident. As soon as I was able to recognize that I had a head injury at all, I immediately wanted my distance from it. The TBI hurt people I loved. The TBI destroyed me, but that’s at the bottom of the totem pole, it hurt everyone I love. It still does – not as often, but it still does. I don’t want to be synonymous with the brain trauma. But where does Shannon end and the brain injury begin?

              Does Shannon even exist absent the head injury? Or is it only the head injury wearing Shannon’s name and her hard earned qualities and attributes? With more of my life now being occupied by the TBI, I don’t know if there is such a thing as Shannon without the trauma. That is why this anniversary hits so much harder. Sixteen years is how many years I got to live as Shannon as I know her – giving FAR more than she ever took. But for the last sixteen years and pending, all this … being…. does is take. Remember that the only way I’ve ever understood my own existence is through my usefulness and love through service. Now that it’s been 16 years, my neediness has outlasted the time and eclipsed the identity where I was helpful. I feel as though being a burden makes me less worthy of being, therefore, how can I exist at all now?

I’ve literally been trying to articulate this concept for years (which is why most of these hyperlinks are in here). But people mistake it as me refusing to move on, nostalgia, me needing better self-esteem or some other choice that I can make about my own progress. But that is not what it is. Nor is it about having enough self-love, it’s about knowing if there even is a self to love. For the first time in my life, I don’t even know what “me” refers to.  

Finally, regarding comments, when your reality has been challenged long enough, reassurance can start to feel less like comfort and more like erasure. That doesn’t mean that I don’t want comments. I LOVE comments. And the thing that buoys me up more than anything are the comments that say something along the lines of “wow, I can relate, thank you for giving me a voice.”

Broken Interior

     For my birthday during COVID, I described my life like the destroyed Nauvoo temple or the burned tabernacle that became the Provo City Center temple. I talked about how every bit of my life was beaten and demolished – except for the foundation. At that time, I was trying to figure out how I could continue to grow when I felt all was lost. So I found the little that was not lost - the foundation of faith, Christ, family support, and core values. However, trauma – especially to the brain – acts more like building a concrete foundation on a fault line. So, I need to build a “base isolation” - the secondary foundation that allows seismic activity to occur underneath the building without causing damage to the structure itself. Furthermore, I need to strengthen the existing foundation using the technique retrofitting. My concrete foundation is still very, very strong. The other two are not – though for the sake of this post I am going to mostly combine them. They could be described as the structural/psychological foundation (which includes identity continuity, cognitive stability, confidence, nervous system regulation, and developmental trajectory) and the relational foundation (which includes friendships, belonging, social mirrors, etc.). While in 2020, I was focused on growth, now I need space to mourn the things that never should have been lost. I need people to know that the parts of me that let me feel like myself were destroyed, even though those are pieces that no one else can see.  

It is actually common for houses to look completely fine from the outside after an earthquake even if there is significant internal damage. This is what I feel like has happened to me. Because now that the shell of the temple has been built, people often assume the damage could not have been that severe. Do not get me wrong, it has been SO hard to rebuild the exterior of the temple. But, what they do not see is that visible survival and structural integrity are not the same thing. A building can remain upright while carrying hidden damage everywhere. The beams can weaken. The foundation can shift. The wiring can misfire. Water can get into places no one notices until years later. Rooms can become inaccessible. The original blueprint can be lost. And when people mistake new walls for destroyed rooms, they will often ask “why haven’t you moved on?”

              That’s the problem. Even those closest to me mistake the passage of time for resolution. Or they think that the concrete foundation is all that is needed. Faith will get you through anything, right? Well… maybe… but what if you don’t know who you are? After all, identity is structural/foundational too.  It is not just a name or a personality or the fact that you are still breathing. Identity is memory. Ability. Temperament. Talents. Relationships. Belonging. Confidence. History. The sense of who you were, who you are, and how those two connect. (I lost ALL of those – even if only temporarily). When a major neurological injury disrupts that continuity, the loss is not abstract. It is architectural.

        So, the explosion didn’t just cause damage, it created a gaping hole in who I am. Our brains expect continuity, especially in one’s own identity. We naturally expect care during crisis, explanation, answers, reunion, emotional closure, etc. But I received rupture then silence. Creating my “own closure” doesn’t work because, unfortunately, these wounds require truth, acknowledgement, accountability, answers, and being remembered accurately. Instead, these loops remain open not because I refuse to heal, but because the people holding the missing pieces walked away.

       When people talk about the growth, the adaptations, or the improvements, they are talking about the exterior of the temple. Whereas I talk about the empty structure. I am still sitting in the basement trying to figure out how to build a sturdy foundation using the same broken materials the collapse left behind. What was gained does not settle what was taken. Pieces of me were stolen and no later growth can retroactively make that untrue. When something foundational is fractured and never fully repaired, pressure keeps finding the weak points. The same grief resurfaces. The same questions return. The same memories hold force long after everyone else thinks they should have expired.

              Which means yes, regardless of how long it has been, I’m still going to need to heal. I’m still going to hold on to “little Shannon.” Because little Shannon (pre-TBI Shannon, or original Shannon) is my last anchor point of a known identity. Without identity, we cannot achieve anything – identity functions as the framework of our lives and is crucial to understanding your values, strengths, decisions, and direction. Like proprioception in the brain (which helps your body know where it is), identity is how the self knows where it is. Because my life is so unpredictable and my emotions are so unstable, I have no sense of “identity proprioception” – therefore, no concept of who I am post-accident.

       This is why I have to hold on to little Shannon with everything I have. Because she is the truest source I have to know who I actually am.  I understand how difficult a concept this is; I’ve gone through multiple different metaphors, spent endless time, awoke countless nights, etc. trying to accurately name what never healed. If people misunderstand what happened, the true story gets replaced. If the true story gets replaced, little Shannon gets erased faster. This is one key reason misunderstanding hurts so deeply; because it isn’t just painful to be misunderstood, it’s dangerous to the memory of little Shannon; it’s dangerous to my identity.

     Every time I talk about when I was 16 years old, or the friends I had, or all the things I lost – it’s not stupidity, immaturity or me refusing reality. It’s me trying to understand what happened to the foundation. I am not stuck in the past because I love pain. I am tethered there because something vital was broken open and never closed. The mind repeats what the system has not or cannot integrate. I am trying to keep real losses from being erased by proof of resilience. I want to preserve the truth that standing is not the same as being whole. And because I am my own temple, I am all of the broken pieces that cannot simply be replaced, I am trying to rebuild something honest from those broken pieces. I want to build my temple correctly, no matter how long it takes.