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.

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. 😊 

My Ongoing Social Struggles

I haven't posted in a long time especially because I've been avoiding feeling anything for a long time. I distract myself in every way possible so that I can avoid the difficult emotions. With all of the heightened anxiety and lack of normal resources to help cope, I stuff everything that comes up into a tightly sealed bottle.
My life really does depend so much upon other people. It shouldn't. I know it shouldn't. But my life, post-accident, does. Other peoples' honesty, consideration, concern, etc matter a lot. The way other people view me or treat me defines and shapes the person I am. When I've had a peer who I felt truly loved and believed in me, I've thrived. I was growing and becoming the kind of person that I want to be. Why can't I do that for myself? It's what I want. I'm trying my best to love myself, I'm doing my best to focus on the Savior. But the pain is so real, so deep and so overwhelming that I just need someone to hold me. I need someone to care for me. I need sweet, unconditional (tangible) love from someone who chooses to be with me without any sort of obligation or alternative incentive. I don't want to feel this way. I really, really don't. Especially when literally no peer will love me. I have had ONE male peer give me a second glance in TEN years. But he doesn't even think twice about me now.

I feel so hopeless; so pointless. I am far too aware of my surroundings; who I am vs who I was and everyone around me. I know that when I spin out of control no one will come back, but there's nothing I can do about it. I know that I'm too much to handle often times, but I don't know how to stop it. I know I say or do wrong things but I don't know how to read social ques. And for me, social is everything. Social plays into everything else. Connection is what life is all about really. We came to the Earth to make connections with people and grow spiritually. How do those things happen? Through relationships! So how are you supposed to feel when you can't sustain a relationship despite everything else? How are you supposed to feel when people look at you as disabled when you don't feel disabled? How are you supposed to feel when people judge you for things that you do not do when you simply cannot do them? How can you feel worthwhile when everything around you tells you that you are worthless? How are you supposed to have any sort of motivation when you can't feel any joy? What am I supposed to do? I watched a doctor show recently that talked about only doing what makes you happy especially when you're in depression. But nothing makes me happy. Literally NOTHING.

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

Work

I do a whole lot more and a lot less than most people all at the same time. I (thankfully) am no longer in school (at the moment). I am not working at a regular job. I am not married nor do I have any kids. I don't tend my sister's kids or work with my disabled sister much either. So how in the world can I claim to do more than most people!?
Oh let me tell you. To begin with, I am often times gone between the hours of 9-5 shuffling between doctors, therapies, and institute. When debate season is in, I'm also gone every weekend, all days long. But that's just the beginning. I'm recovering from damage to the most vital organ in our bodies. This is not something that will heal in a year or two nor even 5 or 10! This is a lifelong process. My neuropsychologist would be the first to tell you that my brain is constantly working on things we talk about all week long. So while I'm digesting how I behave, the interactions I create, and the effects it has on other people, I'm also trying to carry on tasks of a normal life. These "normal" tasks are not easy for me either. I am regularly managing pain, whether that be the direct result of the trauma, the weeks of lying in a hospital bed, or the lack of activity since. I don't know how to do a lot of physical things (like walk properly) anymore - hence why I'm in Physical Therapy.I struggle with simple things that no one in their 20s should have to deal with; things like not remembering how to do exercises, not knowing what I ate 2 hours ago, losing my train of thought in the middle of a sentence or even worse forgetting what I'm thinking about while I'm in the middle of thinking about it. I wonder who will care about me today, who I can talk to or spend time with. Every day I feel abandoned from a number of people. I have problems with sight, not just distance, but double vision, blurry vision, processing, etc - hence the vision therapy. My thoughts run rampant and extremely negative, especially when it's time to sleep. So I never get any sleep, and as we all know, sleep is so important to functioning properly. Especially with all this negative self-talk my muscles get tense and my spine gets all out of whack. Hence the need for chiropractic therapy and for very specialized massage therapy. Oh and this is not all. I have many other doctors or counselors that I see on a regular basis, vocational rehab, psychiatrist, therapist/counselor, primary care doctor, etc. And my appointments do not end there, I also have housing appointments, and employee appointments with a support coordinator, a behaviorist, etc. We also think that I may need some occupational therapy (again) and I really need to get a neurologist.
But despite all of that, I think the hardest part of my "job" as a recovering brain is the greif. I didn't get to walk away when my friends saw that I was not the person they knew. I didn't get to turn around and give up when life got hard. I didn't get to say "my schedule's too full" or "it's not reasonable to treat you anymore." I don't have the luxury of not knowing who I was before the accident. I don't get to say no to the annoying person that won't leave me alone. I don't get to be the person I feel inside. I don't have the capabilities to show what I have inside of my broken head and bruised body. I didn't ever have the chance to grieve, nor do I think I ever will. I am always trying to do, act and be better. While I am mourning in the back of my mind, I have to fight this battle. I don't have the choice but to live with this TBI. I don't have the power to change my circumstances, all I can do is change myself, but changing myself with a broken brain is harder than you will ever know. I cling to the past because it is the only thing real that I can recall.
So yeah, I work pretty dang hard. Do I do any of the "typical" things that you would think of? No. But I think I have a full time job nonetheless. Bereavement is a job in and of itself when it is someone as traumatizing as yourself.