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.

The Messy Middle

The verdict is in. Love via connection is absolutely necessary for brain growth, development and maintenance. Technically, this verdict has been in for a long time, however neuroscientists continue to observe the effects love - or neglect - has on the brain, especially as new technologies become available. Specifically after the recent pandemic, loneliness has skyrocketed, isolation has increased, and more people are suffering depression and other cognitive declines. Why? Because strong social connections support cognitive stimulation, new neural pathways, emotional support, stress reduction and overall well-being.

              Some of our relationships are strong, supportive and build us up; some are neutral; and others tend to drain us, making us feel exhausted after leaving the interaction. What is the difference? It’s easy to believe it may be about common interests, beliefs, age, etc. But what I have found is that is largely irrelevant, especially for one who needs the strength of deeper relationships.

              The key is vulnerability. It’s about dropping the masks; the facades that make you appear perfect. Because true connection doesn’t happen in perfection; it happens in the cracks where the relationship can be mutually beneficial.

I don’t have the option to cover my flaws. I don’t get to curate what people see. The TBI makes darn sure of that. After 15 years, I do a dang good job of hiding how extreme things are, but I cannot disguise every raw emotion and every imperfection. The exhaustion. The overwhelm. The emotional volatility. The cognitive chaos. The way I stumble over things—internally and externally. It’s all there, out in the open, whether I want it to be or not.
I walk into every interaction already exposed.

Therefore, if there’s no visible mess, no cracks, no vulnerability—and when that’s all I ever see, it doesn’t make me feel safe. It makes me feel invisible. Ignored. Like I don’t even exist in their world; I can’t, they have no need for me. I have nothing to contribute.  When I’m standing there, raw and unfiltered, and someone else is polished, composed, and perfect, it doesn’t matter how kind they are. I don’t feel connected. I feel judged, even if they don’t say a word. I feel inferior, even when they’re trying to be helpful. I feel invisible—because their perfection fills the room so completely, there’s no space left for me.

I’m sure that many of these people likely have good intentions. They think that their steadiness is comforting. To a child, it would be; but not to someone who is supposed to be an equal. Unfortunately, it’s worse than that. It’s as though they are on a pedestal, refusing to look me in the eye. When someone approaches me with polished perfection, it feels like they’re speaking at me, not to me—like I’m beneath them. Not in a childlike way. More like a servant. Someone you don’t make eye contact with. Someone you speak around, not with. Someone who exists to listen, not to be listened to. That’s what perfection feels like. Like I’m allowed in the room, but not invited to be human.

               If you want to connect with me, I need you to share something real with me—a struggle, an insecurity, anything that shows you can meet me on my level. It doesn’t have to be huge or devastating, but it has to be honest. You don’t have to share it with everyone, but I need to know that you aren’t perfect. Because connection happens when we drop the masks and meet each other in the messy middle, where no one is flawless and everyone carries burdens. We must first meet in order to connect; and we meet in the messy middle.

Running On Empty By Simply Existing

Most people wake up with some kind of reserve — mental energy, emotional stability, clarity of thought. Some gas in the tank, some charge on the battery. I don’t. I start the day already drained. Not metaphorically. Actually. Physically. Mentally. Emotionally. My brain, ever since the TBI, runs like an old phone that never quite charges past 12%. It doesn’t matter how long I “sleep.” There’s no reset. No full bar. Just a blinking battery icon and the knowledge that today, again, I’ll have to ration every percent like my life depends on it.

And people think, “It’s just basic stuff.” But that’s the thing. The basics are the most expensive. Things most people do on autopilot — making a plan, choosing what to wear, remembering what comes next — they’re brutal for me. My brain doesn’t filter or sequence well anymore. Executive function — the part that’s supposed to organize, plan, and follow through — feels like an app that crashes every time I open it. It drains my battery just by trying to load, and then leaves me stuck anyway.

So even a simple morning can feel like trying to run full-speed through mud while alarms are blaring, people are shouting instructions, lights are flashing, and someone keeps throwing random objects in your path. Everything’s loud. Everything’s urgent. Everything’s too much. And all I’m trying to do is put on clothes and remember if I already put on deodorant.

The to-do list is always too long, too loud, too much — and somehow still missing pieces. I used to be able to knock it out. Now, I can’t start, can’t recall what was next, can’t finish even one thing without burning out. And that’s before anyone else even sees me. That’s all internal. That’s all before the world even starts asking things of me.

And I know how it looks. That’s the worst part. I’m fully, painfully aware of how ridiculous it seems that brushing my hair or answering a message or walking into a grocery store can break me. So I tell myself the same thing I imagine everyone else is thinking: This is so stupid. Why are you like this? Just function already. That voice isn’t helpful. It’s not accountability. It’s a leech. That judgment drains me faster than anything else. It takes whatever little reserve I had left and throws it in the trash.

Because that’s the brutal truth no one sees: I don’t just lose energy from tasks — I lose it from trying to live with the fact that they’re hard. I burn out from the guilt, the shame, the constant internal resistance. Every small thing becomes a war. Not just doing the thing, but fighting my brain to do it, and then hating myself for needing to fight at all.

And yet… somehow I keep going. I’ve run on empty more times than I can count. I’ve had nothing left and still managed to smile, show up, pretend. Some days, I’m like one of those glitchy phones that says 1% but somehow keeps playing music for another twenty minutes. I don’t know how. I don’t know where that last drop comes from. But I find it. And I keep going.

I’m not lazy. I’m tired. And I’m trying with more than I am even able.

I Am Not the Injury… Except When I Am

I can fake normal pretty well now. After 15 years, I’ve learned how to hold a conversation that sounds like me. Most of the time, it’s a blend — Shannon mixed with the TBI. Sometimes, the TBI takes over completely. And every once in a blue moon, it’s just me. In those rare moments, I almost believe I’m still whole.

But that illusion shatters the moment pain walks in.

It all shifts the moment something stings a little too deeply — a reminder of everything I’ve lost, everything I’ll never get back. Usually, it comes when I’m around people I love. Watching them live dreams that once belonged to me. The mission I planned. The college life I expected. The love, the marriage, the children, the travel, the progression. I want all of it for them. I really do. But no amount of love for them can silence the ache in my chest when I remember it was supposed to be mine, too.

And that’s when it happens.

Dissociation.

Only this time, it's not me stepping away from the TBI. It’s the TBI taking over. I shut down. Shannon — the real me — runs to a corner of my mind and stares at the wall. She hides. She vanishes. And the brain injury takes the wheel.

Sometimes I lash out — get sharp, angry. Sometimes I shrink down and disappear. Either way, the one behind my eyes in those moments is not me. It's the scrambled neurons and the fractured wires. It’s not a person. It’s just pain.

And with it comes that familiar, vicious voice:
“You’re not even human anymore.”
“Everything you do is an act.”
“You’re an imposter.”

When I try to do something normal — something light or typical, like putting my hair in braids — the voice hisses again: “You’re pretending. You don’t belong in this world anymore. You’re just a broken brain trying to wear a costume.”

That’s what imposter syndrome looks like when you’ve lived through a TBI. It’s not just self-doubt. It’s self-erasure. It’s watching yourself vanish and trying to pretend you're still here. It’s begging to be seen as human when you can’t even feel human.

If you’ve ever felt this way — if you’ve ever felt like your pain has pushed you out of your own life — I see you.

And if you’re caring for someone who lives in that gap between identity and injury, please know: it’s not just sadness or grief. It’s a full-body, full-soul effort to stay here. To stay real. To keep trying.

We are not our injuries. But some days, our injuries speak louder than we can.

(I'm finally going through old drafts and reworking them, adding new insights and posting them, so expect quite a few for the next little while).

Abandonment Does Not Define Your Worth

 Since my accident, I have felt completely worthless. I have been shamed and disgraced. I was discarded from friend groups that wouldn’t be friends if it weren’t for me. My best friends replaced me. The first boy I ever loved told me I was a threat to society. I was used, abandoned, forgotten. For fifteen years, this has shaped how I see myself: irrelevant, replaceable, like my existence is a net negative—or at best, a big fat zero. Even though, for the first sixteen years of my life, all I ever did was make the people around me feel better.

I recently asked a friend why he loved me—why I mattered to him. He told me it was because I have infinite worth. But that wasn’t what I wanted. I needed more than just “infinite worth.” I wanted to know why I mattered to him. I wanted him to tell me how I helped him, or shaped him, why/how I am unique and irreplaceable to him.

Then my mom gave me an analogy that provided another perspective. She said our time on Earth is like a big puzzle. Without even one piece, the puzzle isn’t complete. That means every person is irreplaceable—not because of what they do, but simply because they belong. Even though that analogy sounds great, the abandonment, the pain, the heartache has attacked my internal worth for the last fifteen years. It didn’t affect me much on a personal level. But it did sound like a great illustrator to help you see what I’m trying to explain—and maybe it can begin to shift my mindset, even though that means rewiring a hard fifteen years.

Part of my problem has been that I didn’t have the right language for this. Semantics really is a big deal after TBI—and my speech therapist will attest to that! Once I was able to separate worth and value, things began to shift.

My worth is infinite, inherent, and unearned. It doesn’t change whether I’m having a good day or a terrible one. It doesn’t depend on what anyone else thinks or how many people show up for me. Worth is who I am as a child of God—equal to everyone else, neither better nor worse.

Value, on the other hand, can often feel transactional. It’s how we see the effect we have on others and the world around us. That value exists whether or not someone else recognizes it—but our ability to feel that value is often tied to whether they reflect it back to us. Our perception of value is what’s fragile and fleeting. Heavenly Father sees the whole picture—the eternal perspective—and so He can see our full value, even when we can’t.

I still don’t feel valued or appreciated. The loneliness of feeling irrelevant and unseen has left me with zero value in my own eyes. But I’ve finally been able to begin to understand that I still have worth, even though I don’t feel valued or appreciated. I’m trying to embrace it when someone tells me I make a difference, when someone shows they see me.

If you’re struggling with worth, remember that your worth is no different than anyone else’s.
If you’re struggling with value, try to remember that your value doesn’t disappear just because others don’t reflect it back to you. It’s not about productivity or recognition. It’s about the impact you make, even when you can’t see it.
And if you’ve been like me for the last fifteen years, maybe just knowing there’s a difference between worth and value might help. I hope so.

The Coveted Virtue of Hope

 

Hope has always felt like something just beyond my grasp—like a distant star I can see but never quite reach. I want it. I crave it. I covet it. But more often than not, it slips through my fingers, leaving me in the dark, clutching at shadows.

And the hard truth? I rarely feel worthy of hope. It’s not that I don’t know what it looks like—I've seen it in others, glowing quietly in their eyes, pulling them forward. But for me, it flickers only when I feel like I matter. When someone sees me, values me, chooses to stay.

That doesn’t happen often. Or maybe it does and I just struggle to believe it.

I know this might make me sound dependent or needy—words I’ve spent years trying to
run from. But I’m not writing this to convince you of my strength. I’m writing this because I need something that I can’t create alone. I need someone. Maybe not forever. But someone—anyone—who is willing to show up, even briefly, and remind me that I matter.

Because even fleeting moments of worth can echo louder and longer than the silence of being alone.

This isn’t a cry for attention—it’s a quiet, honest plea for connection. Not from any one specific person, but from the people in my life who might read this and feel something stir. If that’s you, then maybe this is for you.

I wish I could say I’m strong on my own. But I’m not. Not always. I’m extroverted, yes—but it’s more than that. I don’t just enjoy people. I need people. I find my worth through their eyes, through their presence, through knowing that someone wants me around. And I hate that, sometimes. I wish I could fix it. But right now, I just need to be honest about it.

So I’m saying this to whoever is meant to hear it: Please don’t let me go. Don’t assume I’ll be fine if you back away. Sometimes, the smallest gesture can keep me afloat. Even if it’s not forever.

This is me, reaching out—because I still believe in the possibility of being held through the storm, even when I don’t believe in much else.

So I’ll say it again, not for drama, but for truth: I covet the virtue of hope. And I’m asking—can you help me find it?