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.

"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.

Right Left Integration

I have been learning a lot of things about myself as I've been on this journey of grieving, and healing. I have been through a lot of emotional upheaval in my life and much of it has gotten buried deep inside. 99% of the losses I have had in my life are due to the accident, and losses HURT. Discovering that getting up and doing something you've always done, you suddenly can't do anymore, is devastating. Getting abandoned, betrayed, ignored, and losing people who were part of your life is extremely emotional. Having a long list of to-dos and the desire to do them, but when it gets down to it, you just can't do any of it; that's discouraging beyond belief. Loving someone who refuses to talk to you because of an injury is heartbreaking. Having to relearn how to communicate with people feels hopeless. Dealing with professionals who don't know anything about your situation is incredibly frustrating.
What do all of these things have in common? Pain. Emotions. Feelings. All things that are felt and processed in the right side of the brain. Why does this matter Shannon? Because like so many other things, it represents the opposite world I was thrown into post-accident. I am very left-brained by nature. I think things through very logically and mathematically. I need order, I need things to make sense. Yet, when the accident happened, I was thrown into a world dominated by right-brained activity.

So, what can be done? It's not as easy as it sounds. It's not as easy as learning to write with your non-dominant hand although that is controlled by opposite hemispheres of your brain. It takes some serious integration and let me tell you, that is not an easy thing. I don't know all the ways to integrate the brain, nor will I claim to. But I can tell you how I've started doing it and things that loved ones can do to assist. I have had to tell myself that it's okay to let the trauma out, but I have to have my journal close by me whenever possible. This is because the second something starts to boil up, I have to immediately start to write about it. Whether there is something or someone that triggered it, or sometimes it's crazy dreams at night, but as I begin to write, I am naming (left-brain) the emotions (right-brain) I am feeling. And as things continue to come up, I have to keep trying to describe what I'm feeling and what caused it. Writing it, saying it out loud, activates the left brain and allows for better integration.
Others who are trying to help need to understand first and foremost that getting angry and frustrated with the individual will only make matters worse. Trying to throw logic (left-brain) at someone who is very emotionally charged (right-brain) is not going to do anything positive. What needs to happen first is understanding. You have to meet the right-brain with right-brain. It doesn't matter how irrational you think the behavior is, you have to find out why they are acting/feeling that way and make the feel heard and felt. It is important that you validate their feelings by showing care, concern, or even shared anger and frustration in your words and facial expressions. It is not until that point that you can present logic or rationale. After you have let them feel their feelings, understood them, and let them feel validated, then you can introduce other perspectives, lessen the reaction, etc.