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.”

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.

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.

Communicate. Communicate. Communicate.

I am so low on resources this month, especially given the new brain therapies I am doing. So I am calling in all sorts of support to help me spread the word in brain injury awareness. After all, education is the most powerful way you can change the world! 😁 So for this post, I have been speaking with my cousin a lot and she offered to write a post for me. So, thank you to Andrea: 

As a Speech Language Pathologist, I am ALL about communication. One thing I have learned when interacting with Shannon is that communication is key. There are several reasons why… 
Number One: Shannon has had people in her life leave. I have actually seen this happen. Someone whom she bonded with left the picture, and Shannon wasn’t even sure if that person was alive—no communication. Shannon has developed PTSD with regard to abandonment. Because she has felt the devastating effects of people “moving on” she WILL NOT abandon people. She will keep the communication alive. Conversely, when people stop communicating with her she feels the effects of abandonment. Communication is key for her relationships. Even within family relationships (I am her cousin) she has expressed that ties can exist without real bonds unless meaningful communication is present. 
Number Two: Shannon operates in a world of black and white. Social communication (an often grey area that requires recognition of subtle cues) is a challenge. The WAY you communicate with Shannon is key. Since it is difficult for her to attend to subtle social cues, clear and direct conversation is what she wants. In her own words, she would rather have someone tell her “I don’t want to see you right now” rather than make up an excuse.  Sometimes she asks questions in a way that seems negative or combative when she is seeking feedback.  She wants to use that feedback to figure out what she does to offend people so that she can change and grow.  I see first-hand how hard Shannon works to improve. She is currently working through various therapies (sometimes multiple therapies a day) in order to improve herself. When she talks about being a TBI warrior, she is fighting this battle daily. 
Number Three: Related to communication, I have learned not to run away when Shannon is direct and upfront about life. Just like she is naturally direct with people, she wants people to be direct with her. For example, she feels very REAL feelings and will express them. I have found that the best approach is to let her express those very real feelings and not take it personal (sound familiar?). When she asks questions that can potentially sound confrontational, she is In fact working on self improvement. Don't run away. In fact, one of the best pieces of communication is to LISTEN TO HER. Give Shannon grace and time. And keep communicating :) 

It's All About Semantics

            “I need help…” and I mean what I say. Often people use phrases such as this when they do not actually NEED help. I want people to understand that I do not mince words. When I need help, I mean it. I mean it like I am in a panic attack or almost there!! When someone else says “I need help,” what they usually mean is actually, “hey, I’d appreciate some help,” or “I could use some help.” When I would like help, or could use some help, I say those words verbatim. Educating oneself on this topic can help alleviate misunderstanding. This exact misunderstanding occurred with one of my family members. Until this person was educated that “I need help” actually means I need help, they did not understand the severity of the situation.

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. 

"You're Not Busy"

 “Lilly, come give grandpa a hug!” “mmm… I too busy right now!” was the response my dad got from my niece when she was about 3 years old. People often don’t think that (TBI) warriors can ever use this as a reason (not excuse). The cause is largely because of the invisibility of brain injuries, resource depletion, and constant rebuilding of self on the inside. Not only does just living our daily lives exhaust us, but we have many, many different appointments to try to regain any sense of normalcy. We also still feel like us on the inside, so we hold on to things that we used to do or dream. Let me illustrate that a little bit:

The new brain therapy that I briefly mentioned earlier on is destroying me. It is attacking my brain via MULTIPLE stimuli which in turn makes my brain angry, my body exhausted, and tenses every single muscle. I cannot do much of anything after all of this. Yet, this is something that needs to be done every single day for 2 months to be effective. So, I am running on zero fumes.

But, at the same time, I cannot stop parts of my regular life. I can’t stop some therapies that although draining, are extremely beneficial. I cannot stop seeing my dermatologist nor psychiatrist. I can’t stop taking any of my medications – despite any side effects. I can’t stop going to my physical therapist, neuromuscular therapist, nor chiropractor simply because my body needs them now more than ever. Not to mention I’m getting more “TBIgraines” than usual.

Then the “ME” – what I, as Shannon wants to be doing. Things like going back to school in April and taking one of the hardest classes – so I want to prepare for it by learning as much as I can before the class starts. Additionally, posting about traumatic brain injuries every day in March on my blog. Brain injuries are something I’m very passionate about (for obvious reasons) and there is simply not enough awareness out there.

Those with a traumatic brain injury are some of the strongest – and busiest – people you’ll ever meet. Even though we may not look busy from the outside looking in, the inside is moving faster than you’ll ever know.

Don't Take it Personal!

 This one is from my mom once again: 

In the beginning when Shannon’s brain was still raging, we dealt with really difficult challenges with her.  I remember her screaming at me, telling me I was the worst mother and she hated me!  You expect that from a young child throwing a tantrum or a teenager who is struggling against restrictions but not from your daughter who you were just trying to help her see some realities.  I sat through many doctors appointments where she would make me sound like I was a terrible abusive mother and I thought many times that they would be calling protective services because of what she would say about me to them (which was totally untrue).  But one wise counselor kept telling me “Don’t take it personal!”  I have thought a great deal about that phrase and I teach it to anyone who is willing, let alone to those who work with Shannon.  If society would learn to not take things personal, we would live in great peace.  Don’t be offended, try to understand.  That would be the most important piece of advice that I would give to another family dealing with someone with a brain injury.  If you take it personal, you will fight back, or justify yourself, or lose all empathy.  A person with a brain injury does many things and says many things that without the injury, they would never dream of saying or doing!  When the injury takes control, there is no rhyme or reason to what they may say or do and there is only black or white, nothing in between.

TBIgraine

 

My head was on fire all day yesterday. I say 'on fire' because there is no way to describe a "headache" after a traumatic brain injury. It is worse than a migraine, it is lightyears beyond someone's worst headache because it is a severely injured brain that is pulsing with pain. "The pain [from headaches] originates from the tissues and structures that surround the skull or the brain." Aka, headaches are not associated with the actual brain. Migraines on the other hand, (although the area between headaches and migraines is very grey in today's world) do stem from the brain according to most medical experts. They hypothesize that there is disruption in blood flow attacking neuronal pathways. I have decided that a TBI - migraine should just be called a "TBIgraine." 

With a traumatic brain injury, it doesn't matter where the pain initially originates, the pain quickly is dispersed and amplified throughout the entire brain, upper neck, and surrounding tissues, along with other symptoms associated with typical migraines. (For example, I get nauseous and vertigo.) I cannot explain how a post-traumatic-brain-ache feels. I cannot express how much pain I’m in when it’s happening.

           The other thing that does not help others comprehend the severity is how much pain tolerance I have grown into. The first few times I got one of these headaches, I was taken to the Emergency Room because I literally thought I could not make it through the next few hours. But having dealt with these for the last 10+ years, I’ve grown accustomed to the pain and I know what I have to do. I live with the ‘insufferable’ pain and I continue to “function” as much as I can. But believe me when I say that does NOT mean that you would ever want to feel this pain. 😊 

How I #HearHim

 

Given that today is Sunday, I wanted to take special time to talk about the Savior, after my traumatic brain injury. I need to mention that in a (TBI) warrior’s mind, everything is pre- or post- injury. So, before my accident, I remember feeling spiritual moments often. I believe that I felt the Spirit in many ways: through peace, comfort, prayer, angels, scriptures, church, temple, happiness/joy, gratitude, love, occasional tears, etc.  

After my accident, I felt those connections to deity had been severed. Truth be told: that telephone line was cut and would not ever return. However, the Grace of God is magnificent! As with all brain connections after a Diffuse Axonal Injury (DAI), it takes a lot longer for the same result. It took me a whole heck of a long time to realize that I do still hear Him, albeit quite different than before.

About 3-4 years after my accident, I finally decided that God had not abandoned me. I tried to find some way that He would still communicate with me. I prayed...felt nothing. I searched the scriptures…got nothing. I went to church…gained nothing… except more anger!

Initially I had only found His direct words to me through priesthood blessings. So, lo and behold, I began my journey of asking for lots of blessings. (Which I still do – very beneficial.) Motivated by recent prophetic counsel, I treacherously searched for personal revelation. I had to reevaluate what “feeling” the spirit meant. I had associated feeling the spirit with an actual feeling, as per the word itself. Now I understand that when it comes to the Spirit of God, ‘feeling’ is a relative word. Feeling can also refer to a greater understanding, or to an opening of your mind leading to a greater knowledge of truth – what I call ENLIGHTENMENT. I wasn’t totally aware of how or when this would happen, but I knew that there were times when it did. I would come to great awareness of something I had never thought about after taking time to reflect upon it.

I was still a bit disheartened that I had lost so many ways of spiritual communication. I was feeling really, really despondent and utterly hopeless. I had received 2 priesthood blessings in the last 12 hours and was still feeling awful. I was at my parents’ house talking to my cousin, Andrea. We started reading some of my old Tender Mercies journal entries. Offering an outside perspective to my written thoughts sparked discussion. We continued to talk, bounced ideas off one another, and I learned more ways that I hear Him! One of which is just that, through discussion which leads to uber synergy. Additionally, I have always loved my music, because I feel uplifted when it fills my ears. I have a gift of pondering – which leads to this “enlightenment.”

This is how I #HearHim: discussion, enlightenment, music, pondering. These are NOT ways that I am used to. It is NOT the way that you “feel” something. LoL. It sometimes takes other people who are willing to pay attention to Him as well. But, it is in some ways, possibly more direct. It is potentially more pure. It is maybe more Holy, more like Him.

Brain Injury Survivor

 

The Tide Takes Over

 Quick word from me: 

I have just started some INTENSE new therapies that work my brain hard. Using multiple different methods (Hyperbaric Oxygen Chamber, Theta Bed, rTranscranial Magnetic Stimulation, passive neurofeedback, among others that I am not fully aware of yet) the current neuropathways are being disrupted in my brain to reform "proper" ones. If that doesn't make any sense, that's okay. It essentially means that I'm undergoing a lot of different systems to make my brain work better. 

It is almost 11:00 PM. I am going to do this every freaking day for the next 2 months. I have barely functioned today. I have not been capable of doing anything but rest since I got home today. But in light of Traumatic Brain Injury Awareness month, I felt like I really wanted to post something, but I knew that this would be it. I asked my blessed mother to help me. So, she has written a few posts to help me out over the next 3 weeks. So, this is her input for today.

There are days like today, when Shannon has done way more than she can tolerate well. Those

days become very overwhelming and depressing for her because she can’t accept that she can’t

do everything that she always plans. Today is one of those days. She has taken this daily blog

writing for Brain Injury Awareness Month very seriously and she desperately wanted to post

every day. So to relieve some stress for her, I told her that I would post for her. She sets her

mind to something and she becomes so deeply committed to following through that she can

make her life miserable. If you want words of wisdom from her, I recommend that you read

other blog posts that she has made. One of the favorite of mine is the one about helping

someone with depression.

Just a tidbit about why all brain injuries are so different is because of the location of the injury.

Each part of our brain affects different aspects for who we are, what we are, what we do, what

we say, etc. If you want to know what part of the brain is responsible for what, Shannon could

tell you!! For Shannon, her accident involved her frontal lobe. According to neuroskills.com

“The frontal lobes are involved in motor function, problem solving, spontaneity, memory,

language, initiation, judgement, impulse control, and social and sexual behavior.”

Until You Realize Your Brain Is Broken

       As I alluded to in my last post, I only know what an extremely severe traumatic brain injury feels like. Therefore, the information I share may not be applicable to all head traumas. However, the information I share in this post might sound controversial. It took a long time for my parents to believe that I truly did not understand what was happening rather than being contrary.

            For a long while, I could not comprehend that anything had happened to me. My brain had been damaged, but my mind literally could not grasp that very fact. Even though I was uncapable of doing things that I had always done, my perception was that they were still getting accomplished. For example, my voice was extremely monotone and when my speech therapist would tell me that I had to use voice inflections, I thought she was being insane. Because in my head, I was speaking the exact same way I always had.

            In occupational therapy, my therapist would try to get me to do simple addition problems. I legitimately thought that I was scrolling through the page at a rapid pace and I was extremely frustrated because I had just completed an AP Calculus class and now they were making me do addition! However in actuality, it took me about 10 minutes to get through a page and many of the answers were not even numbers – rather just dashes or dots.

           People had a hard time believing that I was not just being stubborn and belligerent. It seemed so obvious that I could not finish things, that my voice was so deadpan, etc. that there was no way I couldn’t see it! Yet somehow, my brain was not processing that there was a difference. My brain was so focused on physically healing that it could not supply my mind with adequate resources to fathom any sort of deficit.

I had no understanding of why I was trapped in the hospital for so long and I put all my efforts into getting out. To underscore this idea, I would have one sip of a 1600 calorie milkshake and think I had all 1600 calories. (Since eating a LOT of calories was a prerequisite to going home.)

            It took me a long number of months before I began to realize that things were taking a longer time and that things were a heck of a lot harder. It took a lot longer than that to understand that things would never be the same. I still struggle with all of it, but the final piece, radical acceptance, took the longest. “Radical acceptance is when you stop fighting reality, stop responding with impulsive or destructive behaviors when things aren't going the way you want them to, and let go of bitterness that may be keeping you trapped in a cycle of suffering.” It is NOT a joyful acceptance of the reality.

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.