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.”

"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.

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.”

Battle Fatigue

A healing brain is constantly working at a million miles a second in 300 different directions. All the while, our minds are still trying to process what has happened to us. In the matter of a split second our entire world changed. Those of us who suffered a severe  brain injury, lost everyone we knew and loved, lost all of the experiences we ever had and lost everything we ever knew - even to the core of ourselves. The grief is unimaginable, inexplainable and treacherous beyond words. To top it all off, it will last the rest of our lives. It does not matter what we do or where we turn, something is different or feels off and we are reminded of everything we lost. I will post more on grieving later on in the month. But today, I wanted to make a post stating that while there are a lot of fascinating things to know about the brain and injuries that can occur, I'm still living with one. 

It's a constant battle, trying to let go of the past, but hold on to ourselves. The fight between holding on and letting go is draining and all that we want is to return to the person we were before. We will never get that, and every reminder stings. Because of the ultimate exhaustion, you need to give me some grace when it comes to posting great things every day! 

When the Brain Fatigues, the Whole Body Fatigues

     Our wonderful, marvelous brain that not even an incredible scholar understands controls our every movement. Our brain is the mastermind behind everything we do. This includes the annoying rituals of waking up, brushing our teeth, washing our hair, etc. to the unconscious work we do all throughout our lives; like breathing, keeping our heart breathing, digesting, etc. The brain is very connected to every other piece of our body.
     I'll get back to that in a minute, but having that been said, with a traumatic brain injury, one's brain is much, much faster to fatigue. While I do not believe my heart had any problems remembering to beat, I did have a number of problems with breathing so I was put on a ventilator. I had to work for MONTHS and MONTHS to get to a point where I could eat normal things because of the disruption with different parts of my digestive system. I do not have the balance that a normal person has let alone what I used to have. I walk on the edges of my feet where it creates more stress on your knees, foot, ankle, hip and back And these are the things that you are not supposed to think about! So add in the things that a functioning human being should do every day on top of that - wow, what a workout!
     So if our brain controls all of the things I just mentioned, as well as the ordinary thinking, driving,  exercising, going to school/work, cleaning, etc. wouldn't it make sense then, that a person who has to think overtime about all of the unconscious routines would wear out very, very quickly? Yes, and that's what happens to me ALL the time. It's also very frustrating at times however. Because I don't look like I have a disability, I don't give any "physical signs" that I should be fatigued, but when the brain fatigues, the entire body fatigues. What I'm saying is that there doesn't need to be physical signs, there doesn't need to be a reason why someone is overloaded. Sometimes, they've taken in more than they can handle for the moment.
     This is why it has literally taken me SO long to post. I have so many ideas and wonderful things I would like to talk about. But when it comes down to it, which is more important, updating the world, or trying to survive a little bit longer? I hope to post soon, update you on all of the things I've been thinking about lately, but hopefully in light of this post, you will try to understand if that doesn't always happen.
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