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 :)