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.

How Old Am I Really?

Life is a beast, am I right? Well it's worse when you have an injured brain that cannot accept that anything has happened to it. (And when you are going through 1 pneumonia 2 sinus infection 3 medicine changes 4 lack of sleep 5 extreme fatigue 6 extreme lack of motivation 7 nutritional changes 8 increased abandonment stuff 9 new series of PTSD 10 so many things that I have to deal with my car 11 and insurance 12 vision homework 13 chiropractic homework 14 physical therapy homework 15 terrible self-perception yet nothing I can do about it 16 perfectionist me 17 learning -so hard- 18 new changes in gospel things 19 changes in my parents house 20 the need to get a new hobby 21 the constant battle between Shannon and TBI) Those are all just things going on right now. 

As for the purpose of this post. How old am I? Well you see, that's a very interesting question. 

My parents always say to measure age in miles not years. If that's the answer you're looking for, I'm probably 153. (Idk, random number, but OLD.) 

If you are asking my biological, chronological, since the time I came onto the Earth age, well that's 25. But do I feel it in any way shape or form? 

If you are asking where I am "supposed to be" developmentally, medically, etc. that's a completely separate question. The answer to that would be 8.

If you are asking where I am physically, well I reckon that would be closer to 100 - 8. (92)

How about mentally, cognitively? Oh gosh, I have no idea. I have a college degree, but I struggle to remember what I had for breakfast this morning let alone what I learned in my Chemistry class last semester! 

What about socially or emotionally? Well, I think those are two different things. But socially, probably 8, but everyone thinks I'm 25, which is extremely unfortunate. Emotionally, probably 100 - 8, so 92. 

If you are asking how old I feel? Where my brain thinks I am? That is 16 and may forever stay there. It definitely has since the accident. (Okay, okay, sometimes I feel closer to 17, but I was 16 1/2 when I got in the accident!) I think that my brain cannot move past the age that I was at that time. 

Overall, it is very confusing and very, very conflicting. Everyone who sees me thinks I'm a normal 18-25 year old. Guess what? I'm anything but! I can't even decide how old I am! 

New Year, New Understanding of Me

Over the last month, I've had the opportunity to do a lot of self-reflecting. I have also talked to a number of different people with different specifications, learned more about my favorite subject - the brain, and come to a number of conclusions. So many of them I feel I need to write about because it is very important to the TBI population. One verdict that I've had to come to accept is that I can get them done because I'm Shannon, but it will have to be on a completely skewed (and stupid) timetable because I have a traumatic brain injury, and those who love me can accept that. So I hope that you can deal with the lengthy explanation of this last month as I struggle with all of my daily challenges. 

I think the biggest resolution is my lack of human. Don't get preachy on me. Let me explain, and hopefully you'll come to see how it's actually a resolution and not a "woe is me."

More than half of me really did die on that awful day in May. I can't explain it very well, but pieces that made me who I was were taken from this body. Cells in brain did die that cannot be regenerated. I can't describe it, but I have felt like not all of me is here. I can't access the rest of myself, but I know that I'm not all here. The TBI loves taking charge. And unfortunately, because the brain controls literally everything we do, an injured brain will run most of the show. However, I was blessed (or cursed) enough to have a sliver of the Shannon spirit still lodged in there somewhere. Finally, the last piece of me is all of the terribly difficult work that I do every single day to try to function like a normal person. And let me tell you, it is HARD! But every part of your body wants to heal, including your brain.

This finding has honestly been such a relief for me. It explains so many things that are "wrong" with me. It helps me understand why I do some of the stupid things I do. It explains why I don't have energy to do anything a lot of the time. It reminds me that it's not my fault. It explains why people walked - and still walk - away. It tells me that it's okay not to be the daughter of God I used to be - at least on Earth right now. It seems so strange to be relieved to discover that you're not totally human, but it feels so right. 

What I Wouldn't Give

Throughout high school, you take all sorts of trips to different colleges doing various things. I went to EFY, percussion competitions, debate camp, and debate tournaments. During such a voyage, as a high schooler, you experience the joys of what it would be like to go to college, live away from home, make new friends, live in an apartment/dorm, etc. It is fascinating! Life feels awesome and you just can't wait to get out of the house! ... While I wasn't quite that way, I was always so excited for the next step in life.
From debate trips, I had learned that I LOVED Berkeley. I also thought about BYU-Hawaii. I thought that the "worst" I would do was BYU (Provo). My mindset didn't change after the accident; so of course I still applied to numerous other schools. But despite my outstanding grades and great ACT score, I didn't get in; I was confused. (I now know that I couldn't have handled it and it was God's grace). So I still went to BYU... or attempted to. Long story short, the college life that you imagine, dream about, that truly is out there for everyone simply couldn't happen for me.
So devastated, I moved back home; took one class, then quit school for almost 2 years. The size of BYU campus was enormous and overwhelming, so I didn't even entertain the idea of going back there. But I went to UVU the summer of 2013. I hate UVU. Even though I now have a degree from there, with a 4.0, I hate UVU. It is a nothing school to me. I don't care if it is the largest -number wise - school in Utah. I don't care if it is on the rise. It is a nothing school. I can't believe that I had to resort to a nothing school. I mean it's already hard enough that I couldn't graduate with a bachelors in 3 years and then go on a mission. It's hard enough that it took me like 7 years post high school to get a freaking 2 year degree when I already had most of a year's worth of credits graduating from high school. It's freaking hard enough that I have to wrestle with the pain of everything that I once saw myself as, and still don't understand why I can't be that, let alone that I have to admit that my degree is from a nothing school.
What's more, is that I got to my doctor's appointment early on Friday afternoon. So I parked my car and went walking around the hospital, which just so happens to be right next to BYU campus. I saw the Wendy's that we would go to during EFY. Then I saw Pita Pit and remembered all of the fun I had there during debate camp. Then some college kids walked past me and my heart sunk to the center of the earth. This is what all of those high school dreams were! Walking to classes, making new friends, walking just off campus to Wendy's or Pita Pit. It hit me like a semi-truck load of bricks that I will NEVER get to have that kind of journey. Ever. What I wouldn't give to be able to walk from class to class. "But Shannon, the stress is terrible." What I wouldn't give to be able to take so many of the classes that I want to take - in one semester! Even just for one semester! "I don't know Shannon, all I do is study, work, and go to class." What I wouldn't give to make friends with people in my major and have those kinds of study groups. Or be able to learn that much about what I love! Or be able to make money, or be able to feel productive! "Alright, fine, I'll switch you!" Oh my goodness! If you even had a clue!!! You would not switch me no matter how much stress you're in, no matter how lazy you think I am. If we could switch shoes for even 20 minutes, I am so sure that you would beg to be back in your hectic life.
What I wouldn't give, not to switch anyone, because I wouldn't wish this on anyone; but what I wouldn't give to have the ability to focus, to read, or study, to walk across campus, to make - and keep - friends, to share thoughts. to be too busy, to have a job, to have a life! (All credits go to Tonya for that last line. :P "Get a job, get a life!")

Let It Be Known!

As I've been discussing the challenges of living with a brain injury to different people today, I have received an immediate urge to shout from the rooftops the extremities that people simply do not understand. It is of critical nature for those supporting someone who experiences brain trauma to seek knowledge in this topic. As is with any difficulty we face in this mortal existence, although magnified, trauma to the brain is something that absolutely cannot be managed alone. While I will never dismiss help from the other side of the veil, there are far too many times that the veil feels a little bit too strong. 

First thing I find I need to reiterate is the deviation magnitude of resources. Any average person wakes up with a jar full of resources. After a bad night's sleep - maybe a pocketful less, but no where close to as low as someone with a traumatic brain injury after the best night's sleep they can possibly get (which is not very great). Then, while it takes average person, say Joe, maybe 3 resources to get up, get ready for the day, grab something to eat and head out the door, it takes someone with a TBI a large handful. Joe then can go to school, work, come home and make dinner, do some homework and then hang out with friends before he goes to sleep and wake up with a full jar of resources again. But getting up,driving, and going to PT can take all of my resources for one day and then some. Life is EXHAUSTING!! 

Additionally I feel very compelled to stress the reality of frontal lobe injury. House MD 5x17 depicts a good example of a frontal lobe injury. The loss of filters and inhibitions is very real and as I watched this episode, I began to more fully understand why all of my friends left me so quickly after the accident. Although, unlike the man in this episode I had absolutely no idea or concept that what I was saying had any affect on anyone. I couldn't see that it was hurting people, and Is couldn't even remember what I had said moments earlier. I legitimately started to tear up when he says that he would rather die than go home and run all of his family and friends away from him. I couldn't comprehend consequences then, but living them now isn't fun. There is another key difference between this man and a brain injury - his deficit could be removed; ours can't. His was an attack, ours is an empty hole. In his case, they took the army away and things got better; for TBI survivors, we have to learn a new pathway around the hole. 

Please, be patient with us as we try to navigate our way through this new life. Help us to grieve the loss of our old selves as much as you need to grieve that same loss. Remember that we are in this together, even when it feels like those of us with traumatic brain injuries are awful. We are dealing with every kind of loss imaginable - loss of abilities, loss of everything we knew, loss of everyone around us, loss of regular environments, loss of daily functions, and loss of self. So yeah, we get angry. We're not actually angry at you; just at all of the changes that took place so suddenly. 

I don't know how many people still check my blog. I don't know how many people this will reach. But I feel these messages need to be made known to the entire world. So, if you are in a position where you might need someone to come and speak for a few minutes, please send me an email or give me a call. If you agree with what I am saying, share it on your social media feed, etc. Please, help me spread the word. Help me inform the world that brain injuries are real, they are tough, but we can make it through with support of others!