Friday, September 20, 2019

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. 

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Monday, September 2, 2019

Small Steps are Okay


The purpose of this blog initially was to inform loved ones of my status. Since I have taken over, the purpose has changed to inform the world of the struggles of a Traumatic Brain Injury, through the eyes of someone who deals with one. Those who have followed along have watched me transform, seen thoughts roll out and become full on realizations - sometimes total transformations. I don't know everything there is to know about TBIs nor will I claim to. But I work through the challenges of living with one every single frickin' day. 
Every single frickin’ day is a very discouraging thought -- especially when I have to face the fatigue, overstimulation, stress and just plain exhaustion. Because there is a large part of me that still can’t comprehend that there is anything different about me, expectations I have for myself have not been adjusted. (AKA I still expect myself to be able to do everything I once was able to do even though there is evidence everywhere suggesting otherwise.) I get extremely discouraged when habits that I once had no longer exist, or when doing something “simple” takes me 5 times as long.
For the last 9 years I have tried multiple different techniques to combat these challenges. Some of the more effective were making checklists, doing things for 20 minutes, etc. But when it gets down to it, I was still taking on too much, or at least too much to make anything stick. I recently looked up how long it takes to develop a habit and I found that it takes anywhere between 3 weeks and 66 days. And in a moment of bittersweet forecasting I thought, “I’m going to have endless number of miserable 3 weeks to 66 days… but… if I initiate a habit one by one, maybe I can get my life back a little more like I want it.” Maybe that way I could make it a little less miserable – eventually. Maybe that way I can see a little bit of hope – maybe.
So I started thinking of all sorts of things in my life that I wanted to change (that are within my power) and made a list. But then I broke this list apart into charts. Each item had their own separate chart and each chart had 70 cells, 70 cells for 70 days to form a habit. Then despite every ambition within me, I told myself I was only allowed to start on ONE habit. I could still do the other things sure, but I wasn’t allowed to focus on them and try to stress about making them stick; only ONE.
I started it. I chose the one habit that I knew would help me with all the others – morning and evening daily prayer. I am on day 34 and I can confidently say that I think I’ve got a pretty decent handle on remembering prayers twice daily again. It definitely wasn’t easy to begin with, but as I focused just on prayers, and I had my chart next to my bed, it started to finally establish. I don’t know what it will look like as I begin to add more habits, but hey, I’ve got endless number of 3 weeks to 66 days.