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.

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.

What is a Traumatic Brain Injury?

When my parents fist started this blog, the purpose was originally to update loved ones of my status and progress. Since I have taken it over, my purpose has been to inform the world of the day-to-day struggles of a TBI, through the eyes of someone who has one. Today, I am going to tell you about a realization I recently came to that will, hopefully, give insights into my behavior, and potentially others who suffer with a severe traumatic brain injury. Let me start off with a very brief recap.

Ten years ago in May, I was involved in a very serious accident that should have taken my life for good. I was in a coma for 2 weeks - most medical professionals thought that I would not survive, but if I did I would have severe deficits in functional areas. I was diagnosed with the most severe kind of traumatic brain injury, evidenced by both Diffuse Axonal Injury and Subarachnoid Hemorrhage. Because of the trauma to the brain, I had to learn how to do everything again – from breathing, walking, talking to eating, swallowing, crawling, balancing, etc. Everything was taken from me, not just physically, but also functionally in areas such as academic connections, social inhibitors, social filters, consequential connections, and so many others.

Neurons cannot regenerate; brain cells do not produce more when some get lost unlike every other organ in the body. The way the brain heals is through neuroplasticity or building new connections. This means it takes me a lot longer to process the same information or movements as it did before, because my brain has to form and navigate different pathways. There are so very many things that I still struggle with and things that I will likely struggle with for the rest of my life. I often times feel like there are two separate entities within me, one is the traumatic brain injury (TBI) and the other is Shannon. It is a constant battle to govern the TBI and let Shannon come through. This is my new realization -- that there is something else inside of me, making it impossible for me to function normally at times. This is a very real part of me and it is something that needs to be acknowledged. In order for my true self to shine forth, I must learn to combat and overcome the effects of the TBI. But please understand that this is an extremely challenging, uphill battle so Shannon deserves a LOT of credit. 

Given this information, when someone looks at me, the kind of person they see depends on who is in control of my body at the moment. When Shannon is in control, everyone sees that I am a very sweet, loving person who is selfless, kind and extremely forgiving. I love unconditionally, but when the TBI is in control, those characteristics are overwhelmed by anger and frustration. Why is there such discrepancy? Because the traumatic brain injury is fierce; a monster that is hard to predict and hard to control. When I am in pain, the TBI takes over, when I am overly fatigued, the TBI takes over, often the TBI takes over for no reason at all, and it takes more energy than I have to restrain or mitigate it. The TBI does not care about anyone else; the TBI is extremely moody and intolerant. The TBI is impulsive (I never would have believed that I would say that 10 years ago!) The TBI is irritable and gets pissed over the smallest things. However, the people who know me, Shannon, know that I am NOT the TBI and they know that I am a chosen daughter of God who fights the TBI on a constant basis. Although I do a better job at combating the TBI now than I used to, it is still a constant struggle for me and there are still times that I can't control it at all. 

The TBI took away my ability to look at situations and see the consequences. For a long time after the accident (about 2 years) my brain was not willing to accept that anything had changed despite everything being much more difficult. Because of that, I, my literal brain, was extremely angry, ALL THE TIME! So I lashed out at anything and everything for a large portion of those 2 years. I cannot remember much of that time at all. But I have been told that I was extremely rude, needy, and just down-right cruel. During the first few weeks after I got out of the hospital, I literally lost every single one of my peer relationships due to this behavior. Of course, I as Shannon would never comprehend any of the things that I must have done. But because my body, through the TBI did them, none of those relationships will ever recover.

This is by far one of the saddest, most devastating effects of the TBI -- at the precise time when the person suffering from a TBI needs love, understanding and friendship, the negative effects of the TBI pushes people away. Amazingly, the majority of the population doesn’t even know how devastating a traumatic brain injury can be even though according to latest statistics (2018) there are 69 million new TBIs globally each year. The main thing I can do to increase the positivity with which people view me, is to continue to fight the TBI with all my might every single day. I educate people in whatever fashion I can on brain injuries, but it never seems to be enough. I act so different when the TBI takes control that I am a different person. People have a difficult time believing that the real me is remorseful of the actions “I” am taking when the TBI takes control. I hope that this post will allow people to recognize that those with Traumatic Brain Injuries are not bad people; they are likely really good people; their brains are just trying to grieve the hardest loss that anyone will ever have to face. 

Let it Be Known    Fatigue     Initial Separation of Self    Riley    Long Journey    Going Home    You are Blessed    Only Bits Me    Friends    Negativity    Initiation   Continuing Trauma    Resources    Unhappy    PTRD   Depression

Please Don't Blame Me

Trying to live my life on a daily basis is a never-ending battle. I go about things in ways that may seem unconventional or annoying, such as:

      I might be too annoying or too frustrating. It may seem like I never do anything or that I’m always too tired. I may get angry very quickly or walk away without warning. I may take too long to process words or always seem to get lost in my thoughts. I may seem selfish or too involved in my problems. I may seem too churchy or not enough. I may want more physical attention and less sexual; I might be stressed too often or get too overwhelmed to do anything – including clean my own apartment. I may wake up too many times in the middle of the night or not be able to fall asleep for hours. It may be because I love being with my family a little too much sometimes. I do have problems with social filters and cues. I do have problems with the volume of my voice. I do (or at least used to) have problems with the tone or fluctuation of my voice. I might be childish or upset that you don’t have enough experience. I may become upset over stupid little things. I may be very weak. I may never leave you alone, even after you've asked me to several times. It may be any number of things.
     But truth be told, I'm just trying to survive. Some of my methods are not fully thought out. Many of the things I do are out of impulse, or from deep emotions, like every blog post I've been wanting to post for the last month. The hardest thing about all of this is that it honestly does stem from the TBI. My accident literally was a desecration of my skull and destroyed parts of my brain. It was such a trauma that my body may never heal in some regards. The TBI does not have an ending; just because you cannot see it, doesn't mean that it is not there. My TBI is just about as real as it gets, but I do not use it as an excuse. In fact, doctors that have worked a lot with TBI patients commend me for continuing to work so hard against all of the struggles it adds to my life. But I still refuse to accept their commendation because I still make way too many mistakes. See, I will not ever allow myself to use the TBI as my "consequence-free ticket to life." I try my hardest to fight the TBI in all moments, but when I can't, I am sorry. It is not a result of me saying "oh, well I can blame it on the TBI. I don't even have the capacity to think forward enough to say "I can use my injury as an excuse!!!" This is a lifelong injury and I am going to have to deal with this every single day - people telling me I use the TBI as an excuse for everything. 

Things We Take for Granted

     There are many things in life that we all take for granted; things that none of us realize - unless one receives a traumatic brain injury. I am not going to explain all of the little things that the brain does for us that we take for granted, but I am going to give you just a small glimpse of how frustrating a brain-injured life can be.

     Have you ever just fallen on your couch after a long, hard day and enjoyed the peaceful quiet? Those times that you don't have kids screaming, or the blender going, or traffic blowing past your ears. I think you should all know what I'm talking about. Unfortunately, for me, I don't get those moments anymore. I have hypersensitive ears that hear EVERYTHING. Remember plopping to the couch? Yeah, when I do that, I hear the air conditioner, noises from outside, the fridge running, lights or electronics whirring, etc. It's called filtering; your brain is so smart that it deciphers what is or is not important for you to hear, see, smell, etc. So even if I turn on relaxing music or something, I still hear the stupid light buzzing, or the air vent from outside, or even the glitches in the stereo. That's only external noises. The noises inside my head are awful. I don't know how other people think, nor do I remember how I used to think. But I know that among other things, now, I replay situations over and over, I obsess over small things, I am irritated by little things that myself or others do, I am overwhelmed very easily and I wish I was different in nearly every single way.
     Like I mentioned, filtering does not apply just to noises; it applies to every one of your senses. For example, lights can be too bright, too dim, too many different colors, coming from too many directions etc. You can sit down to eat and you can't determine the different smells between the steamed broccoli, caesar dressing, garlic bread, the baby's diaper, your sister's shampoo, your dad's cologne, etc. One of the worst feelings is when I hate feeling the clothes on my skin. It could have something to do with different fabrics on my body that my brain has to go through or it could just simply be that there are times that I just feel literally uncomfortable in my own skin. When your brain has to manually do the work to try to maintain stability, cognitive fatigue becomes a very common occurrence.
      Another symptom of a TBI that affects areas of the brain such as mine is that it messes with your temperature regulator! What does that mean? That I am always cold. Yes, it is the middle of summer but guess what happens at my apartment? I don't have the AC on, I still have my winter clothes out (like my fleece-lined tights that I'm wearing right now),the electric blanket is on my bed year-round, and I sometimes have the heater on in my room.
     Then there is something that no one can quite figure out what exactly happened. My feet ache; all the time. I can't stand in one place for longer than maybe 2 minutes, Exercising is a joke; rollerblading, jumping on the tramp: not for long! Not even a walk on the beach, in the cool/warm sand feels even remotely good. I have a foot doctor that I see, I have inserts in my shoes, I cannot get relief.
     Sleep is awful, fatigue is a beast, negativity is constant, motivation is never there. I lost my perfect sight, I can't communicate the way I used to, I can't learn like I used to, I can't process through thoughts, feelings, or emotions. All of these are just some of the things we don't notice that we have going for us until a TBI. All TBIs affect people differently; depending on cause, location and severity. Although many of these things are very common for all people with moderate to severe head injuries, these are some of the challenges that have been dealt my way.
     I make this post not to complain or have anyone pity me. I'm not doing terrible or anything, frankly I'm not doing much of anything but I felt like I needed to post. I write this post to educate, to inform and to teach. I believe that a reason why I made it through all of this nasty crap is so that I can be a voice for all of those people (TBI or non-TBI) who don't have, are too quiet, or don't understand how to, have a voice.  

After 5 Years, It's Time for a New Identity

     Exactly 5 years ago today, right around this time, absolutely everything changed for me. I was a junior in high school, about to finish up the year with dazzling colors. I loved people – regardless of any race, gender, height, orientation, disability, religion, even regardless of how awful someone would treat me. As you can imagine with someone like that, I had friends on my right and my left, wherever I went. I was excellent at math, currently taking AP Calculus. In fact, I was pretty dang good at every scholarly subject – and always had to have an A to prove it. I was very spiritually strong although it was kept mostly to myself. I loved the fact that I could get ready – and look stinking cute! – in less than 15 minutes in the morning.  By this time, I had worked myself up to one of the most valued debaters on Lone Peak State Champion Debate Team. From debate, I also met this cute kid I called my boyfriend. We had been “dating” for over a year and he knew everything about me. He was such a sweet kid and was absolutely okay to be with me and all sorts of my other friends – even when my other friends were all guys. If I wasn’t at school, debating, or hanging out with friends, I was most likely rollerblading. My favorite thing to do on my rollerblades was begin at the top of my very steep driveway, go all the way down very fast, and jump off the curb. Then I would go right back to the top and do it again… and again. And now that state had finished for debate, I had just gotten a job at Snoasis – the best job ever! I loved taking orders, making and serving snow cones.

     With all of the varieties of friends I had, coming from so many different backgrounds, I helped a LOT of people with a LOT of HARD stuff. I prayed multiple times for God to send some angels to a friend in need. Even after someone would accuse me of terrible, awful things; after someone would treat me like trash; and after someone would not give me the time of day – ignore or even avoid me, I just continued to treat them with love. Yes, times obviously would be hard, and I’d feel very hurt; I know that I had all sorts of challenges, but I was constantly working through them because I knew that eventually, I’d be able to come out on top.

     But it only took one motorcycle with a broken throttle and one backhoe parked in an odd spot to take my entire life and throw it all away. Initially, people – family, friends, doctors, EMTs were concerned if I still had any life left in me at all. As the next 2 weeks went by, I was on life support, in a coma, and people started wondering why so many resources were being used on someone who might not survive at all, and even if they did would likely be brain dead, or paralyzed. After I came out of the coma, I was put through vigorous therapies, but I was unable to comprehend the reason why. I was asked simple questions like, “What does a cow say? What number is between 3 and 5? How many hours are in a day?” I was so frustrated because my brain had not registered that it had been injured, so I thought I knew the answers to all of these questions, even though I did not. I also had to endure physical strain like I’ve never even imagined before. Re-entering this life, completely dependent on others, I had to teach my brain how to do everything – from walking and talking to swallowing and holding my head up - all over again. 

     Because I had not registered that I was severely injured and actually needed to be in a hospital, I was bound and determined to return home as quickly as possible, regardless of how much care I actually needed. Doctors warned and instructed me of a lot of things that would be harder to do as a result of my Traumatic Brain Injury (TBI). With the amount of trauma I had taken, I was unable to accept that I had a TBI, let alone that I had any added difficulties. When friends came around, I felt like they were treating me differently and I still could not believe that I was any different, so I became frustrated. However with a TBI, frustration does not stay as frustration. It turns into anger, lashing out, and threats of all kinds of ridiculous things. Before long, I had run every single one of my friends out of my life. Amongst everything else, school was excruciatingly hard, I couldn’t hold a job for very long, and my spirituality had plummeted. For the last 5 years, there has not been a single day that I have woken up and been happy to be alive.

     For the last 5 years, I have felt intense pain physically and emotionally. For the last 5 years, I haven’t been able to understand why I’m still here, living. Over the last 5 years, I have asked Heavenly Father to take me home countless times. Over the last 5 years, I have struggled with accepting what happened to me. However, the time that I said, “Shannon, it’s about time that you gave yourself permission to emotionally heal,” was possibly the most emotionally painful time. That was 5 months ago and I’m not done yet. With 5 grueling, heartbreaking years, and a lot of faith, trust and insight I am learning to accept my TBI and my life with it.

     I don’t want people to think of Shannon as the person I have been after my accident. Shannon L Blackham worked way too hard to let a stupid motorcycle and a dumb backhoe destroy her name. So please, stop and think about everything you knew about me before my accident. Think about that moment when you heard that I had been in a terrible accident that could possibly take my life. Think about how heartbreaking it was to think that someone who loved you so much and whom you loved in return could suddenly just be taken from you. Stop there. Please, don’t go any further. Shannon L Blackham DID DIE that day; the itty bitty pieces of Shannon that are still fighting inside of me are torn down by the TBI 99% of the time. The TBI has tainted the name of Shannon Blackham and her history in the lives of my own and others. Let us hold the good memories of Shannon and keep it at that.

     The image that I have of Shannon L Blackham is very great and therefore holds high expectations. Trying to live up to the image I have of that name is an extreme struggle. Given my new set of circumstances, I am not able to reach many of my previous hopes and dreams. I need closure from the life I lived before the accident. I recognize that closure doesn’t come to all people in the same way. The TBI wiped my memory of nearly everything therefore I don’t know what really happened after my accident. I only know that this traumatized, brain injured person does not act in accordance to the way that Shannon would have lived. Additionally, one of the strangest things, is that occasionally some random note, shirt, picture, or landmark will flood back dozens of memories with a particular person. The hard part about this though, is that all of those memories can be incredible, but because of the way our lives parted, it tears me apart. It destroys me every time I think about certain people from my past; it kills me even to drive past my old high school; the worst part is knowing that it is all my fault. Or at least it’s the person trapped inside of a traumatized, brain damaged body’s fault. It hurts more than one could imagine that I will never have the ability to be the Shannon L Blackham from before the TBI.  The last 5 years I have been in a state of limbo – no longer being Shannon Blackham; someone largely devoid of personal identity, friends, companionship, confidence, motivation and a desire to move forward. In short, I have been controlled by a TBI.

     As the hardest yet beneficial thing to do, I am saying goodbye to everything I have ever known. In so doing, I’m going to try to reset my goals, dreams and expectations. To do this, I need an entire identity switch. Please do whatever you can to not associate the person you’ve seen for the last 5 years with the name Shannon as she has been TBI. Although selfish, going forward, I’m asking everyone to stop calling me Shannon and start calling me Riley. I need to be able to put Shannon L Blackham to rest and embrace a new persona. A persona that I do not feel the need to justify every action by explaining my TBI, a persona that can accept my new set of qualities and challenges and stop comparing them to everything I was before. With Riley I hope to be able to once again find joy from no longer equating myself to pre-accident-Shannon.

Love sincerely,
     Riley