When it Appears Nothing is Happening

 Over the last few months, while it may appear I haven't been doing anything, I have actually been rolling many, many new processes. Each time I begin to have a new insight, I feel like I probably need to update the blog, but then either something else interrupts, or I realize I have only opened the floodgates and there is still a whole lot more computation coming. So this post will be very raw, very real, and very unpolished but I'm posting to express that there is still SO much growth continuing to happen in this little brain of mine. 

A few months ago, (I hope to have a future post that will explain it much better), I was able to finally make the connection as to why I can't "remember" anything shortly after the accident. It's not that I merely cannot remember, it's that even at the time, I was not understanding anything that was happening. For a little over 2 years, I was still unaware that an accident had truly, in all reality, taken my life and chopped me into a million pieces, and spit me back out expecting me to manage the world just fine. It was HORRID. 

All of this vulnerability (not understanding anything going on) and my great, loving heart has not been so kind to me. Even before the accident, I would see the best in people and disregard everything negative. I was taken advantage of in far less detrimental ways even before the injury. However, when I could not understand anything, after I felt hurt and betrayal and I still refuse to allow anyone to feel that way on my behalf, I've been taken advantage of BAD. Not only during that time, but continually. I still love others and the last thing I want is for them to experience the kind of pain that I have. And I also have a lot of PTSD triggers now. So I will bend over backwards for people who will absolutely and entirely discard me in a very short time period. I did not even know that I did this until about 3 weeks ago!!! I knew that people were terrible to me when all I did was love them, but I didn't know that this was a consistent problem I've had for years. I finally stood up to someone who was abusive. I continually had to remind myself that I was showing myself that I was proving that I loved ME. 

Recently, I've also been more owning of my emotions, relationships, and actions. Instead of using verbiage like "you betrayed me," or "you didn't explain that," I've changed my tone to "I felt betrayed when this happened," and "I didn't understand what you meant." Not only is it helpful in relationships, but it has given me a sense of power, self worth. 

Similar to what I posted recently, yet expounding upon it, I have come to appreciate where people originate. I have no idea where I would ever possibly be had I come from any different circumstances. Neither do you. Just because I have had one set of standards and truth my entire life, does not mean that you have. Just because you graduated high school experience you don't talk to most of those friends anymore does not mean that we can relate in that way at all. Each person is tried according to where they started in life. It's not simply about "how much they can handle" like I've always been taught, but also about where they started. 

Another thing I have wrapped my head around recently is that I am a very deep thinker. I think more eternal, more elemental, root causal, spiritual, etc. than most. I don't want to know simply the 'what,' but also the 'why' and the 'how.' This creates a lot of further investigation and research work when I think of a simple question. It also has caused me to ask a lot of questions, even as a very young child. What I didn't know is that people were questioning my understanding and knowledge of things (like the gospel) because of these deep questions. They could not see that I was not doubting the truth, but trying to understand, for example; God's motive, or why a limit (in calculus) can use the same formula as the one for finding the derivative. This creates a lot of cognitive work/effort therefore causing an excess of cognitive fatigue - especially when I have a brain injury! Brain injuries are significantly known for their impact on cognitive fatigue, given the increase of senses, decrease of filters, decrease in energy, increase of effort it takes to do otherwise simple things, etc. This is something that I very, very much struggle with however because even though I may know that I'm thinking deeper, and that it takes a critical toll on my energy and resources, I have also always been extremely driven. I always want to be doing 100 different things and excelling at all of them. 

This is one of the things that has been so extremely hard. I've been trying to trudge through it for the last (nearly) 12 years. How am I supposed to accept me not doing 100%??? How am I supposed to accept the down days that I have to take when I'm extremely overwhelmed and all hell has broken loose? How am I supposed to accept that this Shannon is not the Shannon I had always prepared myself to be? This is grief that I don't think I'll EVER get through. Yes, some days I'm nicer to myself, but most of the time, I still have to face the reality that I am not who I think I am. I am not who I think I should be, who I could be, who I would be if... if... if... So yes, this is why I cannot stop talking about my accident, why I cannot stop reliving my past; because every single second of every single day I have to deal with the heartache of all that I had, all that I would have, all that I no longer have the ability of attaining. 

Everyone in my past got to say goodbye to the Shannon they once knew. Everyone except for me. It's a terrible, terrible thing and something that you simply cannot understand unless you go through it. I've tried to explain it multiple times and each time it has fallen on deaf ears. I finally, for the first time in 12 years, wrote a letter to little Shannon. It was the hardest thing to do. I literally feel like pieces of me is being ripped out from me as I write it, as I read it, and every time I think about it again. Trying to say goodbye to yourself is the hardest thing to do. Like I mentioned earlier, it's something that others just cannot understand unless they have been through something so traumatic that they need to say goodbye to their younger self. For this reason, I won't say more about it unless anyone asks. 

Finally, probably because of my deep thinking nature, I learn best, I do the most therapy, I figure things out the most when I am the one doing the talking/thinking/directing. When I process the information (sometimes aloud) the puzzle pieces fit together in my head far better than when someone else does it for me. Especially because the kinds of things that people often say are rudimentary answers that don't address the core of the issue. I NEED to address the core. Yes, this may mean it will take more time. Yes, it may be frustrating. But ask my parents or my counselors, it is much more rewarding when you watch me figure it out for myself, in my own way, in my truth, in my life. 

The Prince of Peace

 Ever since the accident I've made a habit of receiving priesthood blessings. On Thursday, I received a blessing with some pretty direct instruction; start praying consistently with full power of heart for the pure love of Christ. To be honest, I wasn't sure how capable I was going to be considering the majority of my prayers recently had been "Heavenly Father, just help me."  But, it was very clear and very direct, so I took it upon myself and tried it. 

On Friday, the most amazing thing happened! I gained an entirely new perspective on life! It was incredibly POWERFUL and SO AMAZING! Every terrible trial that I go through yes, does anguish the Lord, but he allows them to happen because He can see the whole picture. I can't always see the good out of some things even in hindsight, but He knows how it shapes me to be more prepared, more resilient for what's ahead. I am put through the refiners fire in a way I've never understood before. To be pure and clean in His sight, I must be tried in every possible way. I've learned that it's more than just trusting or relying on the Lord (although definitely those two as well) it's a concept I've never understood - let Him direct you in all things; live in the world, but not of the world, You can be informed of what's going on, but do not let your mind dwell on it. 

How the heck can you do that though? How can you bare the most difficult challenges and struggles? Jesus Christ. He is the Answer. He is ALWAYS the answer, He is the ONLY answer. But how can you redirect your anxious mind? A lot of deep, sincere pleadings and focusing on the bigger picture. Try to remember that what you are going through will soon pass and you will come back brighter, with a more sure testimony, and a stronger, mightier warrior for Christ in these last days! How grateful we must be to be able to stand and fight for Him! He is Christ! The Great King Emmanuel, the Lord of ALL the Heaven and Earth. I know this to be true, His love is God's love. With it, mountains can move, minds can be fixed and most importantly, hearts can be healed. When we are fully overcome by His love, the pain ceases. The memories do not, but the pain does. When we allow His love to envelop us, the chaos in the world no longer matters. He is hope. He is light, He is truth, He is the way, He is our advocate with the Father and He is the Prince of Peace. 

So Much Growth!

Living with a brain injury is something that simply cannot be explained. The physical aches, emotional pain, mental struggles, post-traumatic recurrences, current-traumatic stress, relearning simple things on a continual basis, etcetera... exhausting is an understatement. The word 'anxiety' cannot even begin to describe it and extreme clinical depression takes over. Yet, somehow, we push forward, we continue to fight, to move and to learn things about the human body that you just cannot learn any other way. *As not all brain injuries are alike, not all brain injury survivors suffer the same consequences and overcome the same challenges. However, you should never look down upon someone with a TBI because they are champions as they are likely doing everything they can just to do what they are doing. (When I say "we" in this post, I understand that it may not relate to every person with a severe brain injury).*

Along with learning to appreciate things correlated to the human body, we also learn things about ourselves - our spirits, without our carnal bodies. We learn the powerful influence our body has especially as our inhibitions get taken away. It takes a long time for us to learn things again, but when we do, oh how we rejoice!! Despite being in the depths of depression and overwhelmed with anxiety to the point that I can only do 1-2 things a day, I have learned a lot of new things over the past few months so I'm excited to share them with you today. 

The first thing I uncovered is that I am more like my peers than I had thought. Or rather my peers are more like me. Insofar as everyone wants to feel like they have gone through the worst of the worst yet risen above and beyond. While I don't feel like I have risen that much, I do feel like I have gone through the absolute worst! Is that justified? I don't know. But that's not the point. The point is that if everyone wants to feel the same level of "victimhood," we can't function as a society. I never wanted to classify myself as a victim, but I realized that is what I do. And that's what most everyone else does too! While I have learned and tried to focus conversations less on myself and more on the other person, I never made it a goal to let them feel like the "bigger victim." Until I had this realization. After this, I found my conversations work better... at least when I would remember this principle. 

Very shortly after I came to this understanding, I suddenly stopped feeling like I was still 16 100% of the time. I still dream as a 16-year-old, I still want to dress like I did when I was 16, I want the relationships I had and how I had them as a 16-year-old, but I'm beginning to think less like a 16-year-old. I'm able to notice the immaturity of my peers, I am beginning to address relationships the way that they function as a young adult, I am learning that my body won't fit in the same clothes, and I am almost to the point that I can say I am no longer halted by the juvenile mindset of a teenager.  

In that same vein, I have begun to accept some of the challenges I could not bare to accept before. For example, I am finally thinking about actually serving a mission even though it cannot be what I had always planned on it being. After my life was devastated due to the accident, I could not even consider serving a service mission. To me, a service mission was a lesser calling and I have been preparing my whole life for something more. Family History or Genealogy were trigger words for me as well. Because *blech!* I wanted to serve the Lord here and now, and the family history that I had done was terrible. But from little whisperings of the still small voice, and quiet, subtle obedience, I began to find different strains of family history that I absolutely love! I slowly began to consider the possibility of serving a ...service... mission. (There is no more progress on that, just getting things started).

Heart Balloons

This is my 4th attempt at this post. I struggle to find words that articulate my feelings. In recent days I have been rejected over and over and over – which adds additional anxiety in trying to convey these feelings to other people. I don’t know how my words will be taken, if they will be taken seriously, or with the intent that I want them to represent.

              To be honest with you, my previous drafts have been much more eloquent, and I may post at least a version of them later. But I have been hurting for far too long and I cannot “continue to pump more air into my heart balloon.”

              Around the time of my anniversary, I was hit brutally by some people I thought were friends. If being ‘spit upon’ then abandoned was not bad enough already, taking advantage of so many of my vulnerabilities when they know about them is even worse. At that point I stopped being able to do things that I enjoy – learning, studying, rollerblading – and I began to analyze why.

              I thought of many different analogies and metaphors. The best representation that I came up with is ahead, so bear with me. As people, we want to be a happy, beautiful, high-floating heart balloon. What every person knows but not many accept, no one is always floating high. That’s because in this made-up analogy there is no knot that you can tie at the bottom of this balloon. This means that sometimes occasionally, sometimes frequently someone must pump helium air into your balloon.  

            I have a hole in my balloon. I am definitely an extrovert insofar as I get energy, happiness, motivation, etc. from being around other people – more specifically, peers. They give me the drive to keep pumping air into the balloon. However, when they leave (further inducing my abandonment issues) they stretch my hole even larger. Without repair to the hole, deflation is inevitable. 

Over the last 11 years, I cannot seem to hold on to a single one of my peers. I feel like I have been abandoned. Cognitively I know that may not be the case. However, that is what I feel. I don’t know what it is exactly that I do. I know that I think that I’m still 16, and that is not okay. I don’t have a choice in that. I know that I expect a lot of other people because I feel like I’m still a dependent. I know that I require a lot of patience especially when the TBI takes control. But I also know that I have one of the largest hearts of anyone I’ve ever met. My initial statement at an orphanage in the Philippines was imprinted on my Filipino friend’s heart “I don’t even know you, but I love you!” I think that I was loved everywhere I went before the accident; I assume that it was for that kind of reason. I am still that person behind the TBI. I wish I had more control of the TBI and that others could see past it.

  Just as my balloon is deflated, so are many, many others. If you feel like you’re doing well right now, I bet there are many people in your family who are not. Or maybe you’re not floating so high. Self-esteem is critical, exterior support is crucial; so let us all find a way to be Angels Among Us, by offering a “kind word from a stranger [or] a phone call from a friend.”

Let Me Tell You About 11 Years

              There are so many difficult things about living with a traumatic brain injury. I think that one of the biggest struggles is how lonely it all is. Unless you, yourself, are living with it, and are aware of what is going on, it is incomprehensible. I continue to learn more about life with a TBI each and every day and my anniversary seems to get harder each and every year. This is in large part why I’m posting 4 days late. Today, I would like to attempt to explain a concept even those closest to me cannot understand.

              To me, it is simple, yet ever so painful and one of the reasons I struggle moving forward. Everyone in my life either got to grieve the loss of the fun-loving, optimistic, selfless, academic, motivated, (etc.) 16-year-old Shannon OR they never knew her and only know the crappy brain injured individual that I am now. I DID NOT have the chance to grieve that loss. But to be honest with you, I don’t want to. Because that means that she is gone and I am left as that crappy brain injured individual. Sure, a lot of people that meet me since the accident say that they love me as I am but they have no reference. I DO. I don’t want to be a second-class person in comparison to ME. I have always preached not to compare yourself to anyone else. But I never knew that my biggest challenge would be comparing myself to myself.

              Additionally, I don’t feel like I know the 27-year-old Shannon whatsoever. I believe that the only person I know is 16-year-old Shannon. Then there is the TBI. The two coexist inside of me 95% of the time. The other 5% is when it is solely the TBI. In my world, there is only the 16-year-old Shannon who fights the TBI. There is no 27-year-old Shannon. I cannot grieve the loss of 16-year-old Shannon because then the only thing that would be left would be the TBI. There would be nothing else. 

       I struggle every single day and no one sees. I feel lost and completely alone. (I'm about to rant for a minute). No one understands what it is like to live as a 16-year-old for 12 years and counting. The battle between a good person and the TBI doesn't stop for even a second - including while I sleep. People think I'm lazy and just use the TBI as an excuse so they storm out of my life and tell me that I'm the worst. They do not see the continual war going on inside of me. Like everyone else, I want to be loved and accepted. Very few however, have literally died and come back to life and had to pick up all the pieces with all of the memories still intact of who they were; while everyone else had the opportunity to process the without-TBI-Shannon passing, I was unconscious. When everyone else saw what the TBI made of me, I was completely unaware. By the time I came back to consciousness, awareness, and reality, everything around me had changed and I was a completely different person totally confused without any reference of what had conspired. I'm sorry I'm on a bit of a rant, but THIS is MY REALITY. I am left with nothing, for reasons that I do not understand - I still ask "how did this happen to me?" 

      Yes, I maintain my prior to injury status of 'if it had to happen to anyone, I'm glad it was me' instead of someone who would lose their faith, screw their life completely, etc. But, I still ask, "How did this happen?" I know the technical answer. But I am left empty. No one understands; even those who try, they never really will be able to. What I hope you will take away from this post is this: Give those with a TBI some slack. They are fighting HARD every single second. You cannot see it. They probably don't understand what is happening within them almost as much as you don't. Give us a break!

It Isn't Over Yet....

As we wrap up Brain Injury Awareness Month, I want to emphasize a point I alluded to before: Brain Injuries persist. While it has been my goal to increase awareness specifically during March, I want people to remember that brain injuries do not go away after this month. 
This brings me to my next point. I have found that when people have a traumatic event in their life, people run at your beck and call. For example, when I was in the hospital fighting for my life, I had hosts of people ready to help me by sending good wishes through cards, balloons, gift cards, posters, etc. They also supported my family by bringing food, meals, care baskets, etc. and providing help with Tonya and yard work. I am forever grateful for the love and support I (AND my family) received during that time. But my TBI didn’t go away when I got home…
While people are ready to pull out all the stops during the acute crisis mode, I have found that the support fades in the “life after”. In some ways though, LIVING with the brain injury can be the hardest part of the journey. This doesn’t only happen with brain injury, but loss of any kind—can you imagine living life after losing a member of your close-knit family? 
I want to advocate for those STILL LIVING with an injury. It doesn’t go away. Each healing journey will be different, but we still need love. We still need support. We still need people to reach out and communicate. We still need compassion. We still need grace. 
Please remember us…even during the other 11 months of the year. 

Different Kinds of TBIs

 For this post, I am not talking about mild, moderate and/or severe. That post was already done. Nor am I talking about ways in which you could obtain an injury; I'm talking about the different kinds of traumatic brain injuries. There is SO much to try to explain, and so much background to understand! But let me try to break it down into smaller pieces. 

First there are closed brain injuries and penetrating head injuries. Penetrating head injuries are where something breaks through the skull, through the dura and all other meninges (brain protectors) to penetrate and physically damage the actual brain. This rare type of injury only occurs 1-2% of the time. However, this type of injury has been made famous by a man named Phineas Gage. He was working on a railroad when an iron rod shot straight up from beneath his left jaw out the top of his skull. It surprisingly did not kill him but left him with strange new behaviors. "Phineas' survival and rehabilitation demonstrated a theory of recovery which has influ­enced the treat­ment of frontal lobe damage today." 

Each of the primary injuries have many subcategories, if you will. For the sake of you readers, I’ll keep all of the complications out. The first is skull fractures. The next is contusions - or bruises on the brain. A similar but more vigorous category is called coup-countrecoup. This is essentially dramatic whiplash - where the impact throws your brain into one side of the skull and back to the opposite. Then we have 

hematomas and hemorrhages. A hematoma is a blood clot whereas hemorrhages are uncontrolled bleeding. Both cause problems for a few different reasons. As my neurosurgeon put it, “the skull holds 3 things: the brain, blood and cerebrospinal fluid, and if any one of those decides to take up more room it creates pressure which can surround the brainstem and kill you.” Additionally when blood outside of its vessels come in contact with neurons (brain cells) they die. Then we have the most severe and dangerous type of primary injuries; the diffuse axonal injury. Diffuse axonal injury is a twisting and tearing of the connections between the brain cells. The damage results in the inability to function.

Finally, I’ll give you a quick list of secondary injuries. (Especially because it’s late and I’ve been working on this post for hours). Hydrocephalus (increased cerebrospinal fluid in ventricles); Ischemia (insufficient blood flow); hypoxia (insufficient oxygen in the brain); hypo/hypertension (low/high blood pressure); cerebral edema (swelling of the brain); raised intracranial pressure (increased pressure within the skull), which can lead to herniation (parts of the brain are displaced); hypercapnia (excessive carbon dioxide levels in the blood); meningitis (infection of the meningeal layers) and brain abscess; biochemical changes (changes in levels of neurotransmitters, sodium, potassium, etc.); epilepsy.