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.”

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.

Validation

 I feel the need to address the reality of the physical consequences of an invisible injury. Everything about the physical body is driven by the brain. So naturally, when the brain gets injured, the rest of the body gets injured, even when you cannot see it. The debilitation is so real that any situation can stir emotional chaos within the entire soul. I absolutely cannot emphasize this enough. The most random things can become a trigger for my PTSD, and for the last 10.8 years I have struggled trying to distinguish between the different parts of myself. (additional information in these posts: Dissociative Brain Trauma , No Longer the Victim, The Riley Transformation, New Year, New Understanding, Love Yourself, What is a Traumatic Brain Injury, After 5 Years, It's Time for..., Shannon as a Temple)

My dad helped me write this post. But I had to put in a few cents, so I have inserted where I come in. 😊In regards to my dad’s post, we are NOT trying to make life difficult, we are NOT trying to be self-centered, and we are NOT trying to convey a message contrary of appreciation and love.       

              Dad: From my observation, a common challenge with brain injuries is the lack of self-esteem.  This often comes as the individual looks at their current situation vs their life before the brain injury and sees their deficits.  How we respond to their expressions of frustration, inadequacy, anger or discouragement can have a significant impact on how they feel about themselves.  That is where the concept of Validation come in.

              Validation is acknowledging that a person’s opinions, experiences, feelings and expressions are real, and that it is OK for the person to have them.  It is not accepting that they are true or based on fact or that we agree with those expressions.  It is simply allowing an individual to freely express their views without judgement, reprimand or incrimination.  Particularly in our society, we have a tendency to immediately reject and condemn the expressions of others when they differ from our own.  When that happens to us, we feel threatened and belittled—or in a word, invalidated.

              Validation does not come naturally to most of us. When someone expresses to us that they are feeling lonely or depressed, we often respond with something like, “Hang in there, things will get better.,” or perhaps “I know exactly how you feel because I have felt that way before.”  Although well-intentioned, those comments come across as dismissive of their feelings or shift the focus onto us and our feelings.  A more validating response is a sincere, heartfelt expression of, “That must be really difficult for you,” or “I can’t imagine how devasting that must be.”  Those responses offer empathy and understanding, not empty platitudes.  And more importantly, they allow the conversation to continue and be meaningful.

              Shannon insert here In addition to the more appropriate responses my dad mentioned above, it would be extremely helpful to then ask, “is there anything I can do?” But please, only ask if you will actually do something if offered a suggestion. Know that more than anything we just need someone to listen and we likely won’t have anything else you can do.

Another common response is justification. “I was super busy/I don’t have enough time” “Try looking at it from my perspective” “You need to be more sympathetic.” Any of those tells me that I am not enough. It says that whatever you’re using as an excuse is far more important than me. It also tells me that you don’t think that I understand what [busy/pain/stress/school/depression/fatigue/family/guilt/shame/etc] feels like. But validation is key, also in helping people with depression. 

              Dad Again, validation does not equal agreement.  One does not have to accept the premise of another’s feelings to have compassion.  We do have to realize that no matter how we may feel about a given situation, it is real to the other person.  Perception is reality, even if it is not truth.  As we sincerely and honestly validate the feeling and expressions of others, it helps build self-esteem and places us in a position to help that individual address and manage those feelings they are having.  Validation – Try it!!

            Shannon again: As brain injury survivors, we already feel inadequate because we lost all of our dreams, hopes, desires and most of all abilities - functions of our bodies and emotions. Justifying, dismissing, or simply invalidating communicates that you believe we are inadequate as well. Feelings are always valid, even if they are not justified (or true) the feelings are always valid. But even someone who knows that, like myself, still feels absolutely defeated when someone is redirecting the conversation away from my pain to focus on them. I feel like my feelings don't matter because I don't matter. This is an enormous problem. Please, help us all out - not just those with TBIs, but all of your relationships will improve if you practice a little more validation. 

Shannon as a Temple

This was how I celebrated my birthday this year. Here is my speech. 

As a 16-year-old, my life was beautiful. Of course I had struggles, but I knew where to turn when I was feeling overwhelmed, anxious, lost, sad, or alone. Growing up with two sisters with disabilities, being so much younger than the first 2/3 of my family, always expecting myself to be the absolute perfect child, paired with my intolerance for peers to be left alone, to struggle – academically, emotionally or spiritually, and wanting to bring everyone back to the fold of Christ, you can imagine how often those feelings would occur. Yet somehow, I loved my life. I had a zest for everything and I couldn’t wait for the next thing to happen – even when it would cause extreme anxiety.  

 I believe the only way that any of that could be the case is because of my eternal perspective and my love for the Savior. I had an excellent, righteous plan for my future. I was going to graduate high school, get my bachelors degree before I was eligible to serve a mission and then serve a full-time mission for the church of Jesus Christ of Latter-Day-Saints. I was so excited. This was me. This is me. I am the kind of person who works hard in school (maybe I need to mention that I was getting 4.0s all throughout high school) and I am a missionary. I want all of Heavenly Father’s children to realize their potential in the light of Christ with the most joy beyond any of our understanding. This. Is. Me. So when this was taken away from me 2 weeks before the end of my Junior year, I was PISSED.  

In the beginning, I couldn’t understand why I was unable to do simple tasks anymore and why I got overly exhausted all the time. By the time I finally began to understand that this was my new life, I got really angry. In my head, I was still capable of doing everything I once could. Besides that, why would God want to take away such a wonderful plan from me? So while I never denied His existence, I believed whole-heartedly that He did not care about me.  

 I kept trying though. I had a deep-rooted testimony and I was determined to be able to cling to it once again. There are a few things that one must be steadfast and immovable in to be able to stand strong when life hits you hard. I imagine these are different for each person, but there are 3 things that I have done that have saved my life – both spiritually and physically. The first is simple yet so fun. My music is of the most uplifting quality and I do not listen to anything else. The second is my tender mercies journal; when President Eyring suggested (in 2008) we take a moment at the end of each day to consider how the Lord has been in our lives and make note of it, I took that as a call to action and went to work on it immediately. Recording what I am grateful for each day and being able to go back and reflect on it has been extremely powerful. Finally, ever since the first day I could step foot in the temple, I made a resolution to go to a new temple at least every year on my birthday. That brings us to today.  

I haven’t felt very worthy at times. I haven’t felt very loved. I have felt very unloved. I have felt very broken. I have felt very demolished, beaten, defeated and like a pile of ashes. I have felt like the burnt tabernacle in Provo. I have felt like the destroyed Nauvoo temple. I had not ever made that correlation until I was sitting in the dedication for the Provo City Center Temple in 2016. As one of the speakers began describing the Provo City Center Temple’s history – being once sacred then burned, destroyed, having much sadness surrounding it, and then after much thought, deliberation and inquiries of the Lord deciding to make it even holier – it sounded like he was describing me. I remember shuffling through our things as the tears began, trying to find a piece of paper so that I could draw the similarities. This was it. I finally discovered why I had always had such an affinity towards the Nauvoo temple. Because I am the Nauvoo temple, just like I am the Provo City Center temple.  

Everything that I once knew was destroyed. I continue to learn that I’ve been doing all sorts of things wrong since the accident. Small things like walking, standing, or sitting, all of these things I do incorrectly. My brain couldn’t process academics the way that it always had. All of my friends walked away. My hair was shaved and even when it grew back it was growing back a darker color! So, like both temples, there wasn’t a whole lot leftover to work with. However, there was still a strong foundation of my family and my Savior. It was going to take a whole lot of work and a whole lot of time – longer than the Provo City Center but hopefully not as long as the Nauvoo temple – to get back to and holier than before.  

Let me make note that I am no where near close to being finished. I am very much in the construction stage and it feels like I’ve been pounding the same nail, for the last 10 years. However, Cherie Call often reminds me through her music, “when I feel like just a teardrop in the rain, [God] sees the ocean in me.” I have also asked some of my close friends who have been with me throughout all or almost all of the last ten years to help explain the progress that I cannot see.  

Like I mentioned earlier, it has been a tradition for me to visit a new temple on my birthday every year. Unfortunately, COVID makes that impossible. Coronavirus also destroyed the thoughts and plans I had about my 10 year anniversary earlier this year. So in lieu of both of these significant events, we decided to talk about my connection to these unique temples instead.  

Building the lego temple proved to be a long, intricate process. Even in the very beginning there were some pieces that were confusing and I didn’t understand what the point was of having them there. I later found out that those exact pieces were some of the fundamental foundation pieces to hold the insides together. But, despite having placed them exactly where the plan had said to, when I put pressure on them, many of them still collapsed. Building the Provo City Center temple lego set reinforced the similarities with my life. Friends, academics, extracurricular activities, dreams, plans, etc. had all been put exactly where they were supposed to be, yet when pressure was applied, they collapsed. Unfortunately, my life isn’t as easy as picking up the lego piece and replacing it.  

As I began the roof, I noticed something wasn’t quite right. So I had to back track a number of steps. This reminds me of just about everything I have to do now. For example, I used to play all sorts of musical instruments, I was a fast speaking debater, I loved calculus, rollerblading was my outlet, so on and so forth. In order to rollerblade again, I had to regain balance. In order to play any instrument, at the most basic level, I had to go back and learn where middle C is. I still can’t speak fast or do advanced calculus but you understand what I’m saying.  

My spiritual connection was one among many things that was severed in my accident. It is very hard for me to feel His spirit or know that what I am doing is in accordance with His will. Because of this and many other symptoms regarding my traumatic brain injury, I ask for priesthood blessings like it’s nobody’s business. This is something that has helped me rebuild my personal temple.  

Discovering my love for learning and my passion for the brain has also been an aid to rebuild my temple. Grieving the fact that family are the only ones that really matter has supported this construction. But finding the joy that family brings has enhanced the process. Finding ways to serve little children – whom I adore – adds stones to this temple. Serving people I’ve never met in the Philippines and bringing them to Christ, rebuilding my body and how it’s supposed to function, creating strong relationships with therapists and receptionists, living my life in the weird, contorted way that I can now, are rebuilding this temple. I don’t know what it’s going to look like. I don’t have the master plan. I don’t know what the next step is. But I trust the one who does. It has been a long, hard ten years, and I am no where close to being the finished product, but I can firmly say that I believe in Christ. With him, come what may, because I can do anything with Him by my side.