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.

Traumatic and Not Traumatic

 My dad and I visited some family friends in Vernal, Utah a number of months ago. The 17 year old daughter had ripped, holy jeans, so all of the adults were giving her a hard time about them. She explained that these particular jeans with too many rips were thick which made them really nice. We asked her what the opposite of thick was. Her reply, "not thick." 

Did the people who classifies brain injuries use this same logic? Because the two types of brain injury are traumatic and non-traumatic. A non-traumatic brain injury often is referred to as an acquired brain injury, even though "an acquired brain injury (ABI) is an injury to the brain that is not hereditary, congenital, degenerative, or induced by birth trauma. Essentially, this type of brain injury is one that has occurred after birth. The injury results in a change to the brain’s neuronal activity, which affects the physical integrity, metabolic activity, or functional ability of nerve cells in the brain. An acquired brain injury is the umbrella term for all brain injuries. There are two types of acquired brain injury: traumatic and non-traumatic.” (biausa.org) The difference between the two is essentially where the trauma comes from. What makes a brain injury traumatic is if the brain disruption comes from an external force. A nontraumatic brain injury occurs when the brain has an internal failure, i.e. stroke, aneurysm, tumor, or any lack of oxygen.

That's just some factual information. Stay tuned for tomorrow!