When it Appears Nothing is Happening

 Over the last few months, while it may appear I haven't been doing anything, I have actually been rolling many, many new processes. Each time I begin to have a new insight, I feel like I probably need to update the blog, but then either something else interrupts, or I realize I have only opened the floodgates and there is still a whole lot more computation coming. So this post will be very raw, very real, and very unpolished but I'm posting to express that there is still SO much growth continuing to happen in this little brain of mine. 

A few months ago, (I hope to have a future post that will explain it much better), I was able to finally make the connection as to why I can't "remember" anything shortly after the accident. It's not that I merely cannot remember, it's that even at the time, I was not understanding anything that was happening. For a little over 2 years, I was still unaware that an accident had truly, in all reality, taken my life and chopped me into a million pieces, and spit me back out expecting me to manage the world just fine. It was HORRID. 

All of this vulnerability (not understanding anything going on) and my great, loving heart has not been so kind to me. Even before the accident, I would see the best in people and disregard everything negative. I was taken advantage of in far less detrimental ways even before the injury. However, when I could not understand anything, after I felt hurt and betrayal and I still refuse to allow anyone to feel that way on my behalf, I've been taken advantage of BAD. Not only during that time, but continually. I still love others and the last thing I want is for them to experience the kind of pain that I have. And I also have a lot of PTSD triggers now. So I will bend over backwards for people who will absolutely and entirely discard me in a very short time period. I did not even know that I did this until about 3 weeks ago!!! I knew that people were terrible to me when all I did was love them, but I didn't know that this was a consistent problem I've had for years. I finally stood up to someone who was abusive. I continually had to remind myself that I was showing myself that I was proving that I loved ME. 

Recently, I've also been more owning of my emotions, relationships, and actions. Instead of using verbiage like "you betrayed me," or "you didn't explain that," I've changed my tone to "I felt betrayed when this happened," and "I didn't understand what you meant." Not only is it helpful in relationships, but it has given me a sense of power, self worth. 

Similar to what I posted recently, yet expounding upon it, I have come to appreciate where people originate. I have no idea where I would ever possibly be had I come from any different circumstances. Neither do you. Just because I have had one set of standards and truth my entire life, does not mean that you have. Just because you graduated high school experience you don't talk to most of those friends anymore does not mean that we can relate in that way at all. Each person is tried according to where they started in life. It's not simply about "how much they can handle" like I've always been taught, but also about where they started. 

Another thing I have wrapped my head around recently is that I am a very deep thinker. I think more eternal, more elemental, root causal, spiritual, etc. than most. I don't want to know simply the 'what,' but also the 'why' and the 'how.' This creates a lot of further investigation and research work when I think of a simple question. It also has caused me to ask a lot of questions, even as a very young child. What I didn't know is that people were questioning my understanding and knowledge of things (like the gospel) because of these deep questions. They could not see that I was not doubting the truth, but trying to understand, for example; God's motive, or why a limit (in calculus) can use the same formula as the one for finding the derivative. This creates a lot of cognitive work/effort therefore causing an excess of cognitive fatigue - especially when I have a brain injury! Brain injuries are significantly known for their impact on cognitive fatigue, given the increase of senses, decrease of filters, decrease in energy, increase of effort it takes to do otherwise simple things, etc. This is something that I very, very much struggle with however because even though I may know that I'm thinking deeper, and that it takes a critical toll on my energy and resources, I have also always been extremely driven. I always want to be doing 100 different things and excelling at all of them. 

This is one of the things that has been so extremely hard. I've been trying to trudge through it for the last (nearly) 12 years. How am I supposed to accept me not doing 100%??? How am I supposed to accept the down days that I have to take when I'm extremely overwhelmed and all hell has broken loose? How am I supposed to accept that this Shannon is not the Shannon I had always prepared myself to be? This is grief that I don't think I'll EVER get through. Yes, some days I'm nicer to myself, but most of the time, I still have to face the reality that I am not who I think I am. I am not who I think I should be, who I could be, who I would be if... if... if... So yes, this is why I cannot stop talking about my accident, why I cannot stop reliving my past; because every single second of every single day I have to deal with the heartache of all that I had, all that I would have, all that I no longer have the ability of attaining. 

Everyone in my past got to say goodbye to the Shannon they once knew. Everyone except for me. It's a terrible, terrible thing and something that you simply cannot understand unless you go through it. I've tried to explain it multiple times and each time it has fallen on deaf ears. I finally, for the first time in 12 years, wrote a letter to little Shannon. It was the hardest thing to do. I literally feel like pieces of me is being ripped out from me as I write it, as I read it, and every time I think about it again. Trying to say goodbye to yourself is the hardest thing to do. Like I mentioned earlier, it's something that others just cannot understand unless they have been through something so traumatic that they need to say goodbye to their younger self. For this reason, I won't say more about it unless anyone asks. 

Finally, probably because of my deep thinking nature, I learn best, I do the most therapy, I figure things out the most when I am the one doing the talking/thinking/directing. When I process the information (sometimes aloud) the puzzle pieces fit together in my head far better than when someone else does it for me. Especially because the kinds of things that people often say are rudimentary answers that don't address the core of the issue. I NEED to address the core. Yes, this may mean it will take more time. Yes, it may be frustrating. But ask my parents or my counselors, it is much more rewarding when you watch me figure it out for myself, in my own way, in my truth, in my life. 

The Prince of Peace

 Ever since the accident I've made a habit of receiving priesthood blessings. On Thursday, I received a blessing with some pretty direct instruction; start praying consistently with full power of heart for the pure love of Christ. To be honest, I wasn't sure how capable I was going to be considering the majority of my prayers recently had been "Heavenly Father, just help me."  But, it was very clear and very direct, so I took it upon myself and tried it. 

On Friday, the most amazing thing happened! I gained an entirely new perspective on life! It was incredibly POWERFUL and SO AMAZING! Every terrible trial that I go through yes, does anguish the Lord, but he allows them to happen because He can see the whole picture. I can't always see the good out of some things even in hindsight, but He knows how it shapes me to be more prepared, more resilient for what's ahead. I am put through the refiners fire in a way I've never understood before. To be pure and clean in His sight, I must be tried in every possible way. I've learned that it's more than just trusting or relying on the Lord (although definitely those two as well) it's a concept I've never understood - let Him direct you in all things; live in the world, but not of the world, You can be informed of what's going on, but do not let your mind dwell on it. 

How the heck can you do that though? How can you bare the most difficult challenges and struggles? Jesus Christ. He is the Answer. He is ALWAYS the answer, He is the ONLY answer. But how can you redirect your anxious mind? A lot of deep, sincere pleadings and focusing on the bigger picture. Try to remember that what you are going through will soon pass and you will come back brighter, with a more sure testimony, and a stronger, mightier warrior for Christ in these last days! How grateful we must be to be able to stand and fight for Him! He is Christ! The Great King Emmanuel, the Lord of ALL the Heaven and Earth. I know this to be true, His love is God's love. With it, mountains can move, minds can be fixed and most importantly, hearts can be healed. When we are fully overcome by His love, the pain ceases. The memories do not, but the pain does. When we allow His love to envelop us, the chaos in the world no longer matters. He is hope. He is light, He is truth, He is the way, He is our advocate with the Father and He is the Prince of Peace. 

So Much Growth!

Living with a brain injury is something that simply cannot be explained. The physical aches, emotional pain, mental struggles, post-traumatic recurrences, current-traumatic stress, relearning simple things on a continual basis, etcetera... exhausting is an understatement. The word 'anxiety' cannot even begin to describe it and extreme clinical depression takes over. Yet, somehow, we push forward, we continue to fight, to move and to learn things about the human body that you just cannot learn any other way. *As not all brain injuries are alike, not all brain injury survivors suffer the same consequences and overcome the same challenges. However, you should never look down upon someone with a TBI because they are champions as they are likely doing everything they can just to do what they are doing. (When I say "we" in this post, I understand that it may not relate to every person with a severe brain injury).*

Along with learning to appreciate things correlated to the human body, we also learn things about ourselves - our spirits, without our carnal bodies. We learn the powerful influence our body has especially as our inhibitions get taken away. It takes a long time for us to learn things again, but when we do, oh how we rejoice!! Despite being in the depths of depression and overwhelmed with anxiety to the point that I can only do 1-2 things a day, I have learned a lot of new things over the past few months so I'm excited to share them with you today. 

The first thing I uncovered is that I am more like my peers than I had thought. Or rather my peers are more like me. Insofar as everyone wants to feel like they have gone through the worst of the worst yet risen above and beyond. While I don't feel like I have risen that much, I do feel like I have gone through the absolute worst! Is that justified? I don't know. But that's not the point. The point is that if everyone wants to feel the same level of "victimhood," we can't function as a society. I never wanted to classify myself as a victim, but I realized that is what I do. And that's what most everyone else does too! While I have learned and tried to focus conversations less on myself and more on the other person, I never made it a goal to let them feel like the "bigger victim." Until I had this realization. After this, I found my conversations work better... at least when I would remember this principle. 

Very shortly after I came to this understanding, I suddenly stopped feeling like I was still 16 100% of the time. I still dream as a 16-year-old, I still want to dress like I did when I was 16, I want the relationships I had and how I had them as a 16-year-old, but I'm beginning to think less like a 16-year-old. I'm able to notice the immaturity of my peers, I am beginning to address relationships the way that they function as a young adult, I am learning that my body won't fit in the same clothes, and I am almost to the point that I can say I am no longer halted by the juvenile mindset of a teenager.  

In that same vein, I have begun to accept some of the challenges I could not bare to accept before. For example, I am finally thinking about actually serving a mission even though it cannot be what I had always planned on it being. After my life was devastated due to the accident, I could not even consider serving a service mission. To me, a service mission was a lesser calling and I have been preparing my whole life for something more. Family History or Genealogy were trigger words for me as well. Because *blech!* I wanted to serve the Lord here and now, and the family history that I had done was terrible. But from little whisperings of the still small voice, and quiet, subtle obedience, I began to find different strains of family history that I absolutely love! I slowly began to consider the possibility of serving a ...service... mission. (There is no more progress on that, just getting things started).

Heart Balloons

This is my 4th attempt at this post. I struggle to find words that articulate my feelings. In recent days I have been rejected over and over and over – which adds additional anxiety in trying to convey these feelings to other people. I don’t know how my words will be taken, if they will be taken seriously, or with the intent that I want them to represent.

              To be honest with you, my previous drafts have been much more eloquent, and I may post at least a version of them later. But I have been hurting for far too long and I cannot “continue to pump more air into my heart balloon.”

              Around the time of my anniversary, I was hit brutally by some people I thought were friends. If being ‘spit upon’ then abandoned was not bad enough already, taking advantage of so many of my vulnerabilities when they know about them is even worse. At that point I stopped being able to do things that I enjoy – learning, studying, rollerblading – and I began to analyze why.

              I thought of many different analogies and metaphors. The best representation that I came up with is ahead, so bear with me. As people, we want to be a happy, beautiful, high-floating heart balloon. What every person knows but not many accept, no one is always floating high. That’s because in this made-up analogy there is no knot that you can tie at the bottom of this balloon. This means that sometimes occasionally, sometimes frequently someone must pump helium air into your balloon.  

            I have a hole in my balloon. I am definitely an extrovert insofar as I get energy, happiness, motivation, etc. from being around other people – more specifically, peers. They give me the drive to keep pumping air into the balloon. However, when they leave (further inducing my abandonment issues) they stretch my hole even larger. Without repair to the hole, deflation is inevitable. 

Over the last 11 years, I cannot seem to hold on to a single one of my peers. I feel like I have been abandoned. Cognitively I know that may not be the case. However, that is what I feel. I don’t know what it is exactly that I do. I know that I think that I’m still 16, and that is not okay. I don’t have a choice in that. I know that I expect a lot of other people because I feel like I’m still a dependent. I know that I require a lot of patience especially when the TBI takes control. But I also know that I have one of the largest hearts of anyone I’ve ever met. My initial statement at an orphanage in the Philippines was imprinted on my Filipino friend’s heart “I don’t even know you, but I love you!” I think that I was loved everywhere I went before the accident; I assume that it was for that kind of reason. I am still that person behind the TBI. I wish I had more control of the TBI and that others could see past it.

  Just as my balloon is deflated, so are many, many others. If you feel like you’re doing well right now, I bet there are many people in your family who are not. Or maybe you’re not floating so high. Self-esteem is critical, exterior support is crucial; so let us all find a way to be Angels Among Us, by offering a “kind word from a stranger [or] a phone call from a friend.”

Let Me Tell You About 11 Years

              There are so many difficult things about living with a traumatic brain injury. I think that one of the biggest struggles is how lonely it all is. Unless you, yourself, are living with it, and are aware of what is going on, it is incomprehensible. I continue to learn more about life with a TBI each and every day and my anniversary seems to get harder each and every year. This is in large part why I’m posting 4 days late. Today, I would like to attempt to explain a concept even those closest to me cannot understand.

              To me, it is simple, yet ever so painful and one of the reasons I struggle moving forward. Everyone in my life either got to grieve the loss of the fun-loving, optimistic, selfless, academic, motivated, (etc.) 16-year-old Shannon OR they never knew her and only know the crappy brain injured individual that I am now. I DID NOT have the chance to grieve that loss. But to be honest with you, I don’t want to. Because that means that she is gone and I am left as that crappy brain injured individual. Sure, a lot of people that meet me since the accident say that they love me as I am but they have no reference. I DO. I don’t want to be a second-class person in comparison to ME. I have always preached not to compare yourself to anyone else. But I never knew that my biggest challenge would be comparing myself to myself.

              Additionally, I don’t feel like I know the 27-year-old Shannon whatsoever. I believe that the only person I know is 16-year-old Shannon. Then there is the TBI. The two coexist inside of me 95% of the time. The other 5% is when it is solely the TBI. In my world, there is only the 16-year-old Shannon who fights the TBI. There is no 27-year-old Shannon. I cannot grieve the loss of 16-year-old Shannon because then the only thing that would be left would be the TBI. There would be nothing else. 

       I struggle every single day and no one sees. I feel lost and completely alone. (I'm about to rant for a minute). No one understands what it is like to live as a 16-year-old for 12 years and counting. The battle between a good person and the TBI doesn't stop for even a second - including while I sleep. People think I'm lazy and just use the TBI as an excuse so they storm out of my life and tell me that I'm the worst. They do not see the continual war going on inside of me. Like everyone else, I want to be loved and accepted. Very few however, have literally died and come back to life and had to pick up all the pieces with all of the memories still intact of who they were; while everyone else had the opportunity to process the without-TBI-Shannon passing, I was unconscious. When everyone else saw what the TBI made of me, I was completely unaware. By the time I came back to consciousness, awareness, and reality, everything around me had changed and I was a completely different person totally confused without any reference of what had conspired. I'm sorry I'm on a bit of a rant, but THIS is MY REALITY. I am left with nothing, for reasons that I do not understand - I still ask "how did this happen to me?" 

      Yes, I maintain my prior to injury status of 'if it had to happen to anyone, I'm glad it was me' instead of someone who would lose their faith, screw their life completely, etc. But, I still ask, "How did this happen?" I know the technical answer. But I am left empty. No one understands; even those who try, they never really will be able to. What I hope you will take away from this post is this: Give those with a TBI some slack. They are fighting HARD every single second. You cannot see it. They probably don't understand what is happening within them almost as much as you don't. Give us a break!

It Isn't Over Yet....

As we wrap up Brain Injury Awareness Month, I want to emphasize a point I alluded to before: Brain Injuries persist. While it has been my goal to increase awareness specifically during March, I want people to remember that brain injuries do not go away after this month. 
This brings me to my next point. I have found that when people have a traumatic event in their life, people run at your beck and call. For example, when I was in the hospital fighting for my life, I had hosts of people ready to help me by sending good wishes through cards, balloons, gift cards, posters, etc. They also supported my family by bringing food, meals, care baskets, etc. and providing help with Tonya and yard work. I am forever grateful for the love and support I (AND my family) received during that time. But my TBI didn’t go away when I got home…
While people are ready to pull out all the stops during the acute crisis mode, I have found that the support fades in the “life after”. In some ways though, LIVING with the brain injury can be the hardest part of the journey. This doesn’t only happen with brain injury, but loss of any kind—can you imagine living life after losing a member of your close-knit family? 
I want to advocate for those STILL LIVING with an injury. It doesn’t go away. Each healing journey will be different, but we still need love. We still need support. We still need people to reach out and communicate. We still need compassion. We still need grace. 
Please remember us…even during the other 11 months of the year. 

Different Kinds of TBIs

 For this post, I am not talking about mild, moderate and/or severe. That post was already done. Nor am I talking about ways in which you could obtain an injury; I'm talking about the different kinds of traumatic brain injuries. There is SO much to try to explain, and so much background to understand! But let me try to break it down into smaller pieces. 

First there are closed brain injuries and penetrating head injuries. Penetrating head injuries are where something breaks through the skull, through the dura and all other meninges (brain protectors) to penetrate and physically damage the actual brain. This rare type of injury only occurs 1-2% of the time. However, this type of injury has been made famous by a man named Phineas Gage. He was working on a railroad when an iron rod shot straight up from beneath his left jaw out the top of his skull. It surprisingly did not kill him but left him with strange new behaviors. "Phineas' survival and rehabilitation demonstrated a theory of recovery which has influ­enced the treat­ment of frontal lobe damage today." 

Each of the primary injuries have many subcategories, if you will. For the sake of you readers, I’ll keep all of the complications out. The first is skull fractures. The next is contusions - or bruises on the brain. A similar but more vigorous category is called coup-countrecoup. This is essentially dramatic whiplash - where the impact throws your brain into one side of the skull and back to the opposite. Then we have 

hematomas and hemorrhages. A hematoma is a blood clot whereas hemorrhages are uncontrolled bleeding. Both cause problems for a few different reasons. As my neurosurgeon put it, “the skull holds 3 things: the brain, blood and cerebrospinal fluid, and if any one of those decides to take up more room it creates pressure which can surround the brainstem and kill you.” Additionally when blood outside of its vessels come in contact with neurons (brain cells) they die. Then we have the most severe and dangerous type of primary injuries; the diffuse axonal injury. Diffuse axonal injury is a twisting and tearing of the connections between the brain cells. The damage results in the inability to function.

Finally, I’ll give you a quick list of secondary injuries. (Especially because it’s late and I’ve been working on this post for hours). Hydrocephalus (increased cerebrospinal fluid in ventricles); Ischemia (insufficient blood flow); hypoxia (insufficient oxygen in the brain); hypo/hypertension (low/high blood pressure); cerebral edema (swelling of the brain); raised intracranial pressure (increased pressure within the skull), which can lead to herniation (parts of the brain are displaced); hypercapnia (excessive carbon dioxide levels in the blood); meningitis (infection of the meningeal layers) and brain abscess; biochemical changes (changes in levels of neurotransmitters, sodium, potassium, etc.); epilepsy.

 

Damage to Different Areas of the Brain

I apologize for taking so long to finally post this. This is by no means a total collection of all possible symptoms. Especially in the frontal lobe, there are many more deficits, and critical functions that make us uniquely human beings. Damage to the frontal lobe deserves an entire post of it's own (and one not just of a picture). Additionally, it is referring just to blunt trauma, not extensive subarachnoid hemorrhages nor diffuse axonal injuries. It is my plan to tell you what that means tomorrow! 😅

Too Tired to Sleep

     Have you ever been so tired that you can't sleep? Where everything hurts? And all you can do is cry?? Yes, that's me. Has been for the last couple of days. It happens every so often to me, and to the majority of my fellow warriors. How?

    We (or our brains) still believe that we are capable of everything that we used to be able to do. We strive to function at the same level to the point of absolute debilitation. Even as we begin to feel the fatigue sink in, the drive to move forward (or backwards - to our 'original self') digs in deeper. 

    For example, on Wednesday I went to this "new therapy" (we'll refer to as work) in the morning. Then I went to physical therapy and back to work. On Thursday, I went to work, went and skied for an hour and came home to lead a discussion with my friends on grief. Then on Friday I headed back up to work and returned to Park City to visit my brother and his family. All of these things could've been done without even thinking about it prior to the accident. But in current reality, Saturday I was unable to do anything. I couldn't even relax. My body was so fatigued and furious with me. Sunday (today) has been the same way. I haven't gone to church, I haven't been able to think clearly. Over the last 2 days there has been a lot of outbursts of random crying. There has been a lot of pain, and worst of all, I haven't been able to sleep through any of it! 

    Sleep is a struggle for those with a traumatic brain injury. It becomes even worse when you engage in this sort of behavior. Please be compassionate and understanding by realizing that the "poor decisions" they seem to be making come from a place of brokenness, not stupidity nor immaturity. It is extremely challenging to limit yourself physically when your mind tells you that you can do all that you want to do. 

Clarification of the T-Shirts

 Yes I, as in Shannon L Blackham, created the design of these shirts. There is a small profit above what it takes to make the shirt; however, I do not want this month's focus to be on me. So I chose to have the profits go directly to Brain Injury Alliance of the United States. I had originally designed and posted about the shirts so quickly because I had wanted to get them out for March. If they are ordered now, they won't arrive in time to wear this March. However, I do not want to discourage the constant raising awareness all year round - not just in March. I have had an unhealthy (due to everything else I'm doing) "obsession" with trying to post something daily this month. But, something that is important for me to remember is that it is always time to teach people about the brain and how injuries can impact daily living. And something that is important for you to remember is that brain injuries do not happen just in March, or just when I post. Brain injuries happen all day, every day, with every single breath, position, waking AND sleeping. Literally every single part of my life has changed. 

Sorry for the random tangent. Back to the shirts - if you buy them, please wear them with pride and be open to talking about the message. (Not all wounds are visible - Brain Injury Awareness) Tell them what you know about brain injuries. If you send me a story of how I, or someone else you know with a TBI has impacted your life, that I can post on this blog, I'll send you a free shirt. If you have any questions about brain injuries, please, please ask them! I will answer to the best of my ability. The link for the shirts that I designed is here: https://www.bonfire.com/brain-injury-awareness-1/ I added a sweatshirt that you can purchase as well as some youth T-shirts. Please and so much Thank You!!!

Age Discrepancies

 I was 16 years old when my accident happened. Parts of my life (like my biological age) continued naturally. Other parts of my life froze at 16; still other parts reset completely. This warped development has left me with different ages and unrealistic expectations. These unrealistic expectations caused me to create the "Riley persona," hoping to defend the person I was before the accident. 

Common among individuals with severe traumatic brain injury is the anomaly of getting “stuck” at the age of their accident. Although I am biologically 27, I am in many ways still 16. My "norms" - things I think should happen (e.g., friendships, thoughts, self-perceptions, etc.) all remain at 16. I feel 16. And I even look 16 - at least to strangers. I want to be buddies with people who are 16. I can't do the 'adulting' thing very well because "I'm still 16." Case in point: I have a hard time spending my own money. I can't do it. I can save, I can budget, but I cannot spend it. I still feel like a dependent 16 year old. As a 16 year old though, I still want some independence, so I like living in my own place. But, I also spend A LOT of time with my parents, daily. Frozen at 16 makes things all the more difficult when I see people my biological age or younger go on missions, graduate, get married and have lots of kids. Like, what? How is it possible for everyone else to grow up? Especially when I can't?  Why are all of my dreams still as if I was still in high school?  Why can't I just move on??

My biological age is 27, and with that has come 27 years of life experience. Additionally, those 27 years of life experience have included roller coasters that even a 90-year-old may never experience. I have traveled many, many miles emotionally, physically (i.e., rehabilitation), spiritually, cognitively, and socially. I don't know of a single 27-year-old that has gone through as much as I have experienced. Even before the accident, I had a clearer idea of the world, having 2 sisters with disabilities and many other challenges as I grew up. All of those who know me know that I'm 27 as well so when I do things that are more of a 16 year old, that's not okay. Or even worse, is when I do things as if everything I knew had to restart after my accident.

Oh, wait, that IS what happened! But so much of me is normal. So much of me is back to the way it used to be, or even more advanced. But... some aspects of my life did, in fact reset after my accident. I had to relearn activities of daily living. But the hardest part of all is that socially, my brain restarted. When it comes to social skills, I am currently *maybe* 11 years old. I don’t understand many social cues. I don’t have a large number of social filters. This is yet an additional reason I feel weird around people who are my biological age (because in more than one way I am not 27). It is kind of like what I was trying to process in this post back in January of 2019. I hope that this makes sense, especially to all of the people who I have hurt or offended in the past due to my social deficit.

16, 27, 11…I am living in multiple ages; trying to maintain my adulting responsibilities. Even when my brain cannot handle it, so therefore, it is exhausting. 

Communicate. Communicate. Communicate.

I am so low on resources this month, especially given the new brain therapies I am doing. So I am calling in all sorts of support to help me spread the word in brain injury awareness. After all, education is the most powerful way you can change the world! 😁 So for this post, I have been speaking with my cousin a lot and she offered to write a post for me. So, thank you to Andrea: 

As a Speech Language Pathologist, I am ALL about communication. One thing I have learned when interacting with Shannon is that communication is key. There are several reasons why… 
Number One: Shannon has had people in her life leave. I have actually seen this happen. Someone whom she bonded with left the picture, and Shannon wasn’t even sure if that person was alive—no communication. Shannon has developed PTSD with regard to abandonment. Because she has felt the devastating effects of people “moving on” she WILL NOT abandon people. She will keep the communication alive. Conversely, when people stop communicating with her she feels the effects of abandonment. Communication is key for her relationships. Even within family relationships (I am her cousin) she has expressed that ties can exist without real bonds unless meaningful communication is present. 
Number Two: Shannon operates in a world of black and white. Social communication (an often grey area that requires recognition of subtle cues) is a challenge. The WAY you communicate with Shannon is key. Since it is difficult for her to attend to subtle social cues, clear and direct conversation is what she wants. In her own words, she would rather have someone tell her “I don’t want to see you right now” rather than make up an excuse.  Sometimes she asks questions in a way that seems negative or combative when she is seeking feedback.  She wants to use that feedback to figure out what she does to offend people so that she can change and grow.  I see first-hand how hard Shannon works to improve. She is currently working through various therapies (sometimes multiple therapies a day) in order to improve herself. When she talks about being a TBI warrior, she is fighting this battle daily. 
Number Three: Related to communication, I have learned not to run away when Shannon is direct and upfront about life. Just like she is naturally direct with people, she wants people to be direct with her. For example, she feels very REAL feelings and will express them. I have found that the best approach is to let her express those very real feelings and not take it personal (sound familiar?). When she asks questions that can potentially sound confrontational, she is In fact working on self improvement. Don't run away. In fact, one of the best pieces of communication is to LISTEN TO HER. Give Shannon grace and time. And keep communicating :) 

Forever Invisible

 

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.

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