Iceberg Effect

 

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.

From My Mother:

I was standing in the park watching my grandchildren play when the call came.  Within a moment’s time, our lives completed changed.  We thought we had such busy lives but we quickly learned how most of those things that kept us busy were totally not essential.  Our lives for over 7 weeks was about driving to and from the hospital.  We made it through those tough weeks because of many kind and supporting friends and family.  But there have been many many more weeks where very few are aware of the challenges that we face as a family.  Severe traumatic brain injuries don’t go away.  We have learned that progression is possible and is real!  But because it is a brain injury, it’s like riding a roller coaster! Up and down, up and down and squealing around the corner and diving down again.  That’s the way life goes when you support and love someone with a brain injury.  And I really hate roller coasters! 

We have learned so much about the medical world and how much they do not know.  When we left the hospital with Shannon, the doctors’ never really did say, “she has a brain injury”.  They could not tell us what to expect or much about what to do.  They just sent us off to see some rehab folks.  I believe that most families leave the hospital without a clue of what is to come.  It is often one heartache after another.  As we watched Shannon struggle to learn to swallow so she could eat regular food, or saw her friends move on with their lives, or dealt with her anger one minute and her depression the next, our pain was very deep.  We were often confused about what to try to do next.  But we learned so much through this ordeal, that the heart grows ever stronger and we are able to deal better today than we did yesterday.

Brain Injury Survivor

 

Right Now is Temporary

 When children are young, they feel all their emotions in the present moment – as if it’s how they have always felt. “I HATE YOU!” When they don’t actually hate you, they are just mad. Think about how often their favorite color changes. Yet everything is very, very real in that present moment. They haven’t learned the whole picture yet. They have not begun to understand that there is an entire relationship – one where emotions come and go.

This is how it is with Traumatic Brain Injuries, or at least mine. I am (at least now) aware that I won’t always feel this way in terms of things associated with relationships. However, I cannot rate my pain in any sort of way for this reason. When I have a stomachache, it just hurts. To ask how does it compare to a TBI headache is something I cannot compute. All I know is how I feel right now. I do know that TBI-headache pain is some of the worst pain a human body can endure – far worse than a migraine. But, to ask me to rate something on a scale of 1 to 10 is completely out of the question.