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!!!