What is a Traumatic Brain Injury?

When my parents fist started this blog, the purpose was originally to update loved ones of my status and progress. Since I have taken it over, my purpose has been to inform the world of the day-to-day struggles of a TBI, through the eyes of someone who has one. Today, I am going to tell you about a realization I recently came to that will, hopefully, give insights into my behavior, and potentially others who suffer with a severe traumatic brain injury. Let me start off with a very brief recap.

Ten years ago in May, I was involved in a very serious accident that should have taken my life for good. I was in a coma for 2 weeks - most medical professionals thought that I would not survive, but if I did I would have severe deficits in functional areas. I was diagnosed with the most severe kind of traumatic brain injury, evidenced by both Diffuse Axonal Injury and Subarachnoid Hemorrhage. Because of the trauma to the brain, I had to learn how to do everything again – from breathing, walking, talking to eating, swallowing, crawling, balancing, etc. Everything was taken from me, not just physically, but also functionally in areas such as academic connections, social inhibitors, social filters, consequential connections, and so many others.

Neurons cannot regenerate; brain cells do not produce more when some get lost unlike every other organ in the body. The way the brain heals is through neuroplasticity or building new connections. This means it takes me a lot longer to process the same information or movements as it did before, because my brain has to form and navigate different pathways. There are so very many things that I still struggle with and things that I will likely struggle with for the rest of my life. I often times feel like there are two separate entities within me, one is the traumatic brain injury (TBI) and the other is Shannon. It is a constant battle to govern the TBI and let Shannon come through. This is my new realization -- that there is something else inside of me, making it impossible for me to function normally at times. This is a very real part of me and it is something that needs to be acknowledged. In order for my true self to shine forth, I must learn to combat and overcome the effects of the TBI. But please understand that this is an extremely challenging, uphill battle so Shannon deserves a LOT of credit. 

Given this information, when someone looks at me, the kind of person they see depends on who is in control of my body at the moment. When Shannon is in control, everyone sees that I am a very sweet, loving person who is selfless, kind and extremely forgiving. I love unconditionally, but when the TBI is in control, those characteristics are overwhelmed by anger and frustration. Why is there such discrepancy? Because the traumatic brain injury is fierce; a monster that is hard to predict and hard to control. When I am in pain, the TBI takes over, when I am overly fatigued, the TBI takes over, often the TBI takes over for no reason at all, and it takes more energy than I have to restrain or mitigate it. The TBI does not care about anyone else; the TBI is extremely moody and intolerant. The TBI is impulsive (I never would have believed that I would say that 10 years ago!) The TBI is irritable and gets pissed over the smallest things. However, the people who know me, Shannon, know that I am NOT the TBI and they know that I am a chosen daughter of God who fights the TBI on a constant basis. Although I do a better job at combating the TBI now than I used to, it is still a constant struggle for me and there are still times that I can't control it at all. 

The TBI took away my ability to look at situations and see the consequences. For a long time after the accident (about 2 years) my brain was not willing to accept that anything had changed despite everything being much more difficult. Because of that, I, my literal brain, was extremely angry, ALL THE TIME! So I lashed out at anything and everything for a large portion of those 2 years. I cannot remember much of that time at all. But I have been told that I was extremely rude, needy, and just down-right cruel. During the first few weeks after I got out of the hospital, I literally lost every single one of my peer relationships due to this behavior. Of course, I as Shannon would never comprehend any of the things that I must have done. But because my body, through the TBI did them, none of those relationships will ever recover.

This is by far one of the saddest, most devastating effects of the TBI -- at the precise time when the person suffering from a TBI needs love, understanding and friendship, the negative effects of the TBI pushes people away. Amazingly, the majority of the population doesn’t even know how devastating a traumatic brain injury can be even though according to latest statistics (2018) there are 69 million new TBIs globally each year. The main thing I can do to increase the positivity with which people view me, is to continue to fight the TBI with all my might every single day. I educate people in whatever fashion I can on brain injuries, but it never seems to be enough. I act so different when the TBI takes control that I am a different person. People have a difficult time believing that the real me is remorseful of the actions “I” am taking when the TBI takes control. I hope that this post will allow people to recognize that those with Traumatic Brain Injuries are not bad people; they are likely really good people; their brains are just trying to grieve the hardest loss that anyone will ever have to face. 

Let it Be Known    Fatigue     Initial Separation of Self    Riley    Long Journey    Going Home    You are Blessed    Only Bits Me    Friends    Negativity    Initiation   Continuing Trauma    Resources    Unhappy    PTRD   Depression

Small Steps are Okay

The purpose of this blog initially was to inform loved ones of my status. Since I have taken over, the purpose has changed to inform the world of the struggles of a Traumatic Brain Injury, through the eyes of someone who deals with one. Those who have followed along have watched me transform, seen thoughts roll out and become full on realizations - sometimes total transformations. I don't know everything there is to know about TBIs nor will I claim to. But I work through the challenges of living with one every single frickin' day. 

Every single frickin’ day is a very discouraging thought -- especially when I have to face the fatigue, overstimulation, stress and just plain exhaustion. Because there is a large part of me that still can’t comprehend that there is anything different about me, expectations I have for myself have not been adjusted. (AKA I still expect myself to be able to do everything I once was able to do even though there is evidence everywhere suggesting otherwise.) I get extremely discouraged when habits that I once had no longer exist, or when doing something “simple” takes me 5 times as long.

For the last 9 years I have tried multiple different techniques to combat these challenges. Some of the more effective were making checklists, doing things for 20 minutes, etc. But when it gets down to it, I was still taking on too much, or at least too much to make anything stick. I recently looked up how long it takes to develop a habit and I found that it takes anywhere between 3 weeks and 66 days. And in a moment of bittersweet forecasting I thought, “I’m going to have endless number of miserable 3 weeks to 66 days… but… if I initiate a habit one by one, maybe I can get my life back a little more like I want it.” Maybe that way I could make it a little less miserable – eventually. Maybe that way I can see a little bit of hope – maybe.

So I started thinking of all sorts of things in my life that I wanted to change (that are within my power) and made a list. But then I broke this list apart into charts. Each item had their own separate chart and each chart had 70 cells, 70 cells for 70 days to form a habit. Then despite every ambition within me, I told myself I was only allowed to start on ONE habit. I could still do the other things sure, but I wasn’t allowed to focus on them and try to stress about making them stick; only ONE.

I started it. I chose the one habit that I knew would help me with all the others – morning and evening daily prayer. I am on day 34 and I can confidently say that I think I’ve got a pretty decent handle on remembering prayers twice daily again. It definitely wasn’t easy to begin with, but as I focused just on prayers, and I had my chart next to my bed, it started to finally establish. I don’t know what it will look like as I begin to add more habits, but hey, I’ve got endless number of 3 weeks to 66 days.

Temple of Christ

  One of the goals that I have had since I was almost 12 years old, was to go to a new LDS temple every year on my birthday. The exploration of a new temple has spread far beyond once a year, as I take every opportunity to visit each new temple I can.
While many people have a goal to visit all 50 states, or 100 etc, my goal is far different. Yes, it's great to say that I've been all over the world visiting all these temples, but that is absolutely not the motivation behind it. As I walked into the Cedar City temple this year, I was overcome with the beautiful spirit that only comes from the temple of the Lord.
I love my Savior, Jesus Christ beyond words. I have a testimony of His reality, His divinity, His purpose and His mission. I know Him as my brother, my Savior and my friend. He is my lifeline. He is my strength and my courage when everything else is failing. He is the light in the darkness. He takes my hand and guides me along this treacherous path that I have been given to bear. But because of Him, I do not have to bear it alone. Although yeah, despite those who love me, I cannot share the yoke with any other human being. It is only through Christ that I can feel relief, and only through Christ that I can be made whole.
I feel His strength in the holy temple. I love visiting so many different temples because I feel the intense rush of the spirit through my soul even more so in a new temple. Visiting the temple strengthens my conviction. Through grief and pain, His voice is heard, "ye shall obtain!" I believe in Christ, so come what may! This is one of the hardest things to say at times, but when I put my whole faith and trust in the Lord, I know He will get me through and take care of me every step of the way.

     

What is Happy?

I've always meant to write a book about my story. But the magnitude of the task to capture all of the heartache, devastation, insights, failures, relationships, testimony building experiences has seemed far too overwhelming. So I recently decided to start by writing short stories, but came to the realization that I don't know how to do that because I can't imagine a happy or even meaningful ending.
What is happy? I don't mean the dwarf on Snow White, I don't mean the emoji or the character on Inside Out. I am talking about pure, genuine, untarnished happiness. Every day I wake up drained and exhausted from a sleepless (or at least restless), dreadfully insomniac night. I have to force myself to get up and start moving. Anything and everything I do takes resources by the dozen! I don't look forward to daily activities, doctors' appointments, therapies, or alone time. I don't enjoy any of the "hobbies" that people will throw out - they are typically more difficult than I feel like they should be (and were before) which makes me extremely discouraged.
Happiness has become such a foreign concept to me that I cannot even formulate how it could happen (for someone like me at least). I mean sure, I guess I could write a story where out of nowhere a magic wand comes into one's life but really, I can't do that. I couldn't do that, feel right about it and write with any sort of conviction. It just will NOT happen.
Quite honestly, I don't know what happiness even looks like anymore. I used to dream about things like a husband with kids. But thinking about watching my children go through hell, that sounds miserable. I used to really, really enjoy spending time with family but each year gets harder, sadder, and less internally inviting. I once loved water sports but when I went to the lake on Friday, I was miserable.
So, the long and the short of it is that I'm in a very, very deep depression. One that I don't know I'll ever come out of. Honestly, I don't understand life any other way.

P.S. If you've been around me lately and haven't noticed, don't feel bad, I can put on a very deceiving mask.  If I've shown nothing but misery, it's because I often don't care enough to fake it.

Initiation

Let's be honest, I don't post very often. I don't do vision therapy or physical therapy homework very often; I don't clean my apartment very often; I don't make myself food very often; I don't even shower very often. But why? It's not like I forget, it's not like I'm incapable, it's not even like I don't want to! So what is the problem? While yes, resources do play a large part, an even larger part when I am awake, alert and "full" of resources is the initiation. What I mean by this is that I cannot get myself started on a task. After I'm going, (as long as it's not a difficult feat) I'm fine and I can complete the task just fine. The problem is getting started. I cannot explain it, I do not understand it myself except that it is a symptom of a Traumatic Brain Injury. That first step is just too dang hard. It's as if I'm stuck in a pit of mud and can't get out on my own. But as soon as someone pulls me out, then I can walk forward just fine. But nevertheless, I need that pull out. It is something that my brain just won't let me do. It is so challenging and extremely difficult - especially when you want to do something so badly but you just can't pull yourself up to do it. It is something that is VERY real because of the direct physical injury to the brain.

Work

I do a whole lot more and a lot less than most people all at the same time. I (thankfully) am no longer in school (at the moment). I am not working at a regular job. I am not married nor do I have any kids. I don't tend my sister's kids or work with my disabled sister much either. So how in the world can I claim to do more than most people!?
Oh let me tell you. To begin with, I am often times gone between the hours of 9-5 shuffling between doctors, therapies, and institute. When debate season is in, I'm also gone every weekend, all days long. But that's just the beginning. I'm recovering from damage to the most vital organ in our bodies. This is not something that will heal in a year or two nor even 5 or 10! This is a lifelong process. My neuropsychologist would be the first to tell you that my brain is constantly working on things we talk about all week long. So while I'm digesting how I behave, the interactions I create, and the effects it has on other people, I'm also trying to carry on tasks of a normal life. These "normal" tasks are not easy for me either. I am regularly managing pain, whether that be the direct result of the trauma, the weeks of lying in a hospital bed, or the lack of activity since. I don't know how to do a lot of physical things (like walk properly) anymore - hence why I'm in Physical Therapy.I struggle with simple things that no one in their 20s should have to deal with; things like not remembering how to do exercises, not knowing what I ate 2 hours ago, losing my train of thought in the middle of a sentence or even worse forgetting what I'm thinking about while I'm in the middle of thinking about it. I wonder who will care about me today, who I can talk to or spend time with. Every day I feel abandoned from a number of people. I have problems with sight, not just distance, but double vision, blurry vision, processing, etc - hence the vision therapy. My thoughts run rampant and extremely negative, especially when it's time to sleep. So I never get any sleep, and as we all know, sleep is so important to functioning properly. Especially with all this negative self-talk my muscles get tense and my spine gets all out of whack. Hence the need for chiropractic therapy and for very specialized massage therapy. Oh and this is not all. I have many other doctors or counselors that I see on a regular basis, vocational rehab, psychiatrist, therapist/counselor, primary care doctor, etc. And my appointments do not end there, I also have housing appointments, and employee appointments with a support coordinator, a behaviorist, etc. We also think that I may need some occupational therapy (again) and I really need to get a neurologist.
But despite all of that, I think the hardest part of my "job" as a recovering brain is the greif. I didn't get to walk away when my friends saw that I was not the person they knew. I didn't get to turn around and give up when life got hard. I didn't get to say "my schedule's too full" or "it's not reasonable to treat you anymore." I don't have the luxury of not knowing who I was before the accident. I don't get to say no to the annoying person that won't leave me alone. I don't get to be the person I feel inside. I don't have the capabilities to show what I have inside of my broken head and bruised body. I didn't ever have the chance to grieve, nor do I think I ever will. I am always trying to do, act and be better. While I am mourning in the back of my mind, I have to fight this battle. I don't have the choice but to live with this TBI. I don't have the power to change my circumstances, all I can do is change myself, but changing myself with a broken brain is harder than you will ever know. I cling to the past because it is the only thing real that I can recall.
So yeah, I work pretty dang hard. Do I do any of the "typical" things that you would think of? No. But I think I have a full time job nonetheless. Bereavement is a job in and of itself when it is someone as traumatizing as yourself.

Healing Love

I have unconditional love for people. I always have. While my love for everyone is still unconditional, there are still different degrees of my love. Post-accident, I have been especially sensitive to the way people act, interact, exude energy... just how they are. It takes a certain type of personality to be conducive for healing. It takes a special type of person to promote healing.  And because I have been hurt far too many times by not being told I am loved, or being lied straight to my face; I am sincerely honest, express my love and compliment others excessively. Is this a problem? Often times, yes. I scare people, they aren't used to it, they don't think I'm sincere, they think it's inappropriate, whatever. But when someone helps my lifelong healing process instead of hinder it, yeah, I'm going to tell you that I love you. I love you  because you encourage me, you make me want to do better, you help me strive for higher heights, you make me feel good about who I am today instead of feeling awful about who I'm not - in comparison to who I used to be. These people are invested in my progression. These people love me unconditionally and I could never thank them enough for that. While I have a good handful of these kinds of people in my life, I have recently added 3 more and I want to acknowledge them. These people are Reed Carter, Devin Duval, and Moses Baca. I know that I would be struggling in therapies (might have just given up), wouldn't be coaching for debate anymore, would feel super lonely during the vast majority of my days, without them. So thank you, I'm grateful for you more than you may ever know. I love you guys, and all of you who promote my healing. Of course I love everyone I have ever met, but it's not the same. Either way, I love you, please don't be weirded out by me saying that.