The Panicked Jumble of Brain Injury Level Confusion

Ever since my first severe concussion over two years ago, I’ve been adjusting. I’ve had to adjust to a plethora of different experiences, emotions, limitations, etc. But the one thing that’s been the hardest to adjust to has, without a doubt, been my slower mental processing. In my brain’s best moments sometimes the delay is hardly even noticed. In the worst moments it’s an absolutely chaotic jumble of information going unprocessed as my mind freezes and goes into ultimate panic mode while my face is so completely blank people become uneasy that I’m staring at them for longer than usually accepted in society. The majority of the time my mental reactions fall somewhere in between these two extremes, but that doesn’t make even the slightest panic moment any less frightening.

Two Years and a Day

 

Two years and one day ago was when my life changed forever. To those of you who have suffered from a chronic illness or injury for longer than that, maybe much longer, my two years may seem like the blink of an eye. To those of you who have never suffered from such a long term injury, that may seem like ages. To me, it’s kind of both. On the one hand it seems like a lifetime ago that I was preparing to enjoy my senior year of high school and packing my schedule to the brim with volleyball, AP classes, choir, youth group, church, praise band, girls’ ensemble, Mu Alpha Theta club, French Honor Society, National Honor Society, etc, etc. On the other hand, I can’t remember enough of the last two years to fill that much time logically in my head!! Whichever way you look at it, it’s still 2 years. That’s 730.5 days or 17,532 hours that I have had a continuous headache. With the exception of an hour or two sometime last winter when my doctor tried a nerve block that nearly made the pain vanish, even if only for a couple of hours. After giving me the nerve block and allowing it the time to kick in, he asked my pain level- a question I had been asked more times since the start of all of this than I could even attempt to count. And I thought about it, and then started laughing, just chortling slightly, which over the next few seconds turned to hilarious uncontrollable laughter. My brain still being a bit slow at times, I couldn’t figure out why I was laughing, I simply knew that I was. For some reason my body was reacting with uncontrollable outbursts of laughter so intense by this point that I couldn’t even attempt to answer his question. He laughed a bit along with me, but he didn’t seem surprised. He explained it very simply, only saying, “Some people laugh, some people cry, some are too shocked to respond. It’s completely normal.” He smiled kindly and said he would come back in a minute, once I’d calmed back down. The laughing began to subside once he left the room and at that point is when I finally started realizing what he had been saying. “Some people laugh, some people cry, some are too shocked to respond”. It was only then that my brain fully comprehended. There was no pain. Well, there was so LITTLE pain. I couldn’t believe it! My body had already reacted to what my brain couldn’t yet believe to be real.

Things I’m Thankful For in this Time of Tribulation

In attempt to break up the discouraging blog posts, I decided it would be fun to reminisce on some really funny, stupid things I’ve said or done while under the influence of my concussions/brain injury. However, unfortunately, I don’t remember any of them!! So, I decided, instead, to take a moment to look back on all of the things I’m so immensely grateful for despite my struggles during this time of tribulation. So, here goes!

 

My Faith

My faith has gotten me through many difficult and stressful times in my life before now, but I have never been so dependent on God for encouragement and hopefulness before in my life. Which also brings up that I’m incredibly thankful that God could love me and chase after me, personally, so much that he would work very personally in my life to help build me up in encouragement and remind me that He has my best interests in mind. And, in addition to that, I’m so thankful that this time has had the effect of making me more dependent on God and leads me to have a closer relationship with Him. I cannot look back on how my faith and relationship with The Father has grown over the last nearly two years and believe it to be a coincidence. I firmly believe that this was one specific reason that this struggle has been brought into my life and I can’t help, but sit in awe of The Father’s love for me. I do not deserve a love like His and I will continue to be in awe of that and grateful beyond words for it for the rest of my life here on earth and thereafter, as well.

 

My Family

Yes, my parents and I step on each other’s toes and are like kerosene on the flame of each other’s tempers at times, but I know beyond a shadow of a doubt that they love me despite my moments of having an unappreciative or unruly attitude. I know that my pain and what currently seem to be “setbacks” in my life break their hearts almost as much as it breaks mine, and knowing that I have parents who are so invested in my life that it would affect them so much to see me hurting is definitely a blessing. I see how much they care and it only encourages me more. I know that no matter how small my world seems to get, I’ll always have those two on my side to support me.

I’m Slave to My Own Brain (Injury)

Recently I was made aware that June, though known for a multitude of things, is also Headache and Migraine Awareness Month. Heeding this knowledge put some pressure on me as far as what I thought would most effectively explain the huge affect “brain pain” (as I like to call it), in any of its forms (chronic headaches, migraines, concussions, and brain injuries as a whole) can have on someone’s daily life. So, I’ve decided that the best way to establish this is to explain the many ways in which I’ve come to live waiting on my brain’s every beck and call.

One difference, for example, is that I’ve had to become highly accustomed to planning things very far in advance. This is because I’ve had to adapt to a new lifestyle where I have to “save up” if I want to be able to go out to dinner with friends or spend a day doing a lot of walking around from place to place, or even to comfortably be able to sit through a church service on Sunday mornings. By “save up” I mean that I have to constantly be aware of how many stressors I’m exposing my brain to throughout each day, and limit that exposure, so that my head can afford to take a hit that night I go out to dinner or that morning I go to church. If I don’t plan ahead and monitor the exposure I allow to affect my headaches, I won’t be able to survive a loud restaurant with clanking dishes and lots of talking people and the many lights hanging around me. If I go through the week not bothering to consider the fact that I need to be functional that night or allow myself to be exposed to too many pressures my headaches will not only spike for a few hours during the day, or maybe the rest of the day, but will eventually rise throughout the week until my base headache is so high that I can’t even get up from the couch or walk to the kitchen without my head pounding in furious pain, let alone survive an entire dinner in a place full of so many triggers.

That being said, despite how diligently I try to “save up” throughout the week for a big event, more than likely I’m going to have such a killer headache by the time I get home that I’m not going to want to do anything, but go straight up to take my medicine and then fall right into bed. Not only that, but because sleeping is the best way to allow a damaged brain to heal, I’m probably going to do my best to make sure I go out on a night where I can sleep in as long as my head requires the next morning. Many times I’ll end up sleeping eleven or twelve hours to recover from a night out to dinner. In the cases of Sunday morning church I often come home and take a nap for a couple hours during the afternoon before my brain revives enough that I feel I can be productive.

The most deciding factor in how much I sleep in or how often I nap during the day is how aware and effective I need to be to complete the tasks laid out for me for the next day. This is a huge reason why I’m not able to go back to school right now. As it is I can manage to work part time as long as I keep up with my sleep at night and take naps however frequently is necessary during the day (obviously not while at work, though).

However, despite my efforts to sleep as long as possible each day and to take naps when my head says it’s time for a break, my base headache is still too high for me to be able to sit down and really dig in deep to a subject for very long at all. In attempt to keep myself somewhat nerdy I play multiple different quiz games on my phone regularly and work puzzles in my Sudoku book. I force myself to work out math problems (however simple) that I come across in everyday life just to make sure that I still can (and if I’m honest, some days I just really can’t). But even in these feeble attempts to keep my mind sharp and aware I can’t force my brain to work through them for longer than about ten minutes at a time for the games on my phone (the lights of the screen don’t help either, even though they’re set very low) and about 30 minutes tops on the Sudoku puzzles (which is only about two puzzles in the “easy” section since it takes my brain so much effort to try to work through the puzzles and tires me out). In addition, I usually pick  only one of these options a day because the more I push my head and try to force it to be able to do more, the worse it is for me in the long run dealing with a worse spike that’ll last longer and in making it harder for my brain to heal overall.  It’s for this reason I know that at this stage in my recovery school is not a realistic part of my daily life; I wouldn’t be able to sit in brightly lit classrooms, staring at a bright white board or brightly lit projection screen for an entire lecture, let alone be able to listen to the lecture full of specific words and phrases that I would need to not only know how to define, but to process and understand. I know this because that’s what it was like before I finally had to come to terms with the fact that I could no longer be successful in my classes and needed to pursue a medical withdrawal, so I could try to ease the amount of pressure on my brain and allow it time to heal.

On another note, my headaches also spike due to the change in air pressure when it rains. Typically it seems that the worse the storm-or really, the more dramatic change in air pressure- the higher my headaches spike and the less I can function as a result. Therefore, for this reason, when I’m at work and a storm comes through it becomes much harder for me to focus and perform my duties. The worse my headaches get the worse I feel: I get more and more exhausted, mentally and physically have less energy, it becomes much harder for me to seem genuinely impressed or amused by anything, and my mental processing slows considerably. That being said, if I’m not at work or somewhere that I’m obligated to stay, I often make a point to go or stay home and curl up on the couch or take a nap and try my best to avoid doing anything else that could make my headache worse. The last thing I need when experiencing a spike in my headaches that I can’t do anything about, is to go around doing things that would contribute to that pain if I can choose not to do them.

It’s usually times like these when I  either turn on Netflix and watch a show (usually Bones, my favorite) that I’ve already seen multiple times or put in Disney movies I’ve already seen many times because in choosing those specifically my brain doesn’t have to do any guesswork or questioning at all. Watching TV is already a pretty mindless activity, but I’m just going one step further to make sure my brain has even less to process. And because it’s my TV (or my parents that I have the right to control) I can turn the volume down as low as necessary and turn the brightness of the screen down, as well, to even further reduce the amount of stress on my head. This is also something I often do when my head hurts too badly for me to be able to fall asleep; it keeps me entertained and distracted, at least a little bit, so that maybe I won’t notice the screaming pain of my head as much. If I don’t try to distract myself and I can’t fall asleep it leaves me lying in my bed and (quite literally sometimes) writhing in pain, not knowing what to do with myself as I remain completely unable to lessen my headaches.

Nevertheless, sometimes all the attempts I make to monitor the exposure of stressors and to get plenty of sleep, and plan ahead are made completely pointless in a matter of minutes. Whether due to a combination of factors I didn’t notice adding up, or a series of events I couldn’t control, or if my brain just decided to have a terrible day, within minutes I can end up at the mercy of my headaches. My headaches have forced me to leave work early, leave social gatherings early, say no to parties, concerts, even cosmic bowling, taken away my ability to sing with the praise band at church (which I loved), forced me to permanently retire from my absolutely favorite sport (even recreationally), and most serious of all they’ve forced me to withdraw from my freshmen year of college and left me waiting helplessly to know whether or not this will be a permanent adjustment.

So, I will leave you with this important message to ponder before your life goes merrily on. If you know someone suffering from chronic headaches, or migraines, or a brain injury of any kind, maybe try not to be so quick to cast a disgusted face on those when they turn in early, or frequently decline your invitations to go out, or don’t leave the house much, or look like they’re amounting to very little. I suggest that first you take the time to hear their story and their struggle and to consciously take note of the effort it takes for them to wave it off as if it’s not a huge limiting factor in their life. It’s possible that the few times they’ve accepted your invitations to get coffee or tag along to a party or go see a movie with you, it’s taken them all week to save up for those occasions, an entire week of preparation to join you per your request. So, instead of thinking about how much they don’t attend, maybe look into how much effort is required of them to come to even one social outing for you because that could be the difference that shows you just how much they’re going through and how important you really are to them.

An Open Letter To Those Who Think They Understand My Brain Injury

Let me start by saying this message is not directed to the many loving, caring people that ask me how I am and truly care. I also want to say thank you to all of the people that have so diligently kept me in your thoughts and prayers over the last year and a half.

HOWEVER, to all the people that call me a liar, a baby, or desperate for attention: this is for all of you that mock my struggle by believing you have complete understanding of my situation.

First thing is first: I can assure you, that you don’t. I know this for two specific reasons.

One, it is a well-known fact that every single head injury is different depending on a million different factors. Separate cases can have similarities, yes, but in the end they’re like snowflakes. The effects of each injury on each individual person depends on a plethora of things, including the wiring of the brain, the state of the injury, the areas of the brain most affected, the ways in which that area is affected. You can basically talk around all of the individual ways in which each circumstance and brain is different than all the others that occur in the world, even if only different in seemingly minute ways.

Two, there are only five people in my life that could possibly understand at least a fraction of my personal situation. Why? One of them is going through a very similar situation and we talk from time to time about how we are handling our respective situations. My primary issue is chronic mind-numbing headaches, whereas hers is balance/stability severely influenced by visual complications. Physically our symptoms are different, but she has had the headaches for a short time and I the balance and visual complications for a short time. Though we struggle long term with separate things we have experienced the exhausting pain and struggle of the other’s primary complication. In addition to that we have also both had our lives severely impacted and even put on a severe hiatus with an unknown expiration date. She is the closest to understanding my situation. The other four people don’t understand as well as they wish they could. They have never experienced my personal type of pain. They haven’t experienced having nearly everything they’ve ever identified with taken from them. But they listen to me. They try to understand. They care enough about me to try to understand. They have spent enough time trying to get to know me and gaining my trust and proving that they actually genuinely care about me that I have actually taken the time to tell them how I truly feel and they have taken the time to listen.

I cope with the physical pain in multiple ways. But most importantly I cope with the emotional trauma in a different set of ways. One of those, probably the one I follow most adamantly is pretending I’m fine. Some may tell me that is unhealthy, but to be completely honest it’s not your choice, is it? The important part is that’s how I choose to deal with it. I don’t like being negative, I like being positive and hopeful and filled with joy. Unfortunately, admitting to myself the truth of my current situation is upsetting. Admitting to myself just how much I’ve lost is quite disheartening. So instead, I focus on what I still have: the options open to me, the people that love me and always will, and my faith- my God, that will never leave me.

So, now that you understand this, maybe you will realize why I’m not exactly willing to divulge my true emotions to everybody that asks how I’m doing. Let’s be honest, when some of you ask me, “How are you doing? How are your headaches?”etc, you don’t really want to know. Because the truth is desperately tragic. The truth is me rambling on about all the opportunities I’ve missed. But, I don’t admit this because I want your pity. In fact, I specifically don’t tell any of you this to avoid your pity. After all, how can I continue pretending everything is okay if I look around and everybody that knows me sees me as damaged? Am I damaged? Quite honestly, yes. Will I ever return to the way I was before the accident? Quite possibly not. I have accepted this fact. But I don’t really care your opinion on the subject. At the end of the day I only have the time and effort for the people willing to sit with me and hear the good, the bad, and the terribly ugly.

With that said, it would be greatly appreciated if you stopped assuming you understand what I’m going through or think you have me figured out because, as stated above, I can assure you, you don’t. The ONLY person that completely understands what is going on with my brain is the one who created it.

To all of you that are convinced I’m faking it. I forgive you. But my sinful human nature also drives me to say, screw you. But I also want to say that to all the people who have faked severe headaches, migraines, or brain injuries whether it be completely untrue, or if you stretched it longer than it truly lasted or if you exaggerated the severity of your pain. I say screw you for abusing the fact that brain injuries cause pain unseen. Screw you for giving the rest of us a bad name, for making people doubt us. Screw you for making people who have seen me in desperate amounts of pain believe that there is no possible way my head could hurt as much as I say it does, that it could debilitate me as much as it has. Screw you for making people doubt me when my pain is unbearable.

How dare you exaggerate and/or falsify your pain simply because our hurt cannot be verified. I want to point out that I forgive you all, as well. But that doesn’t mean I’ve forgotten the trouble you’ve caused for me and many like me. Because our pain cannot be seen, because we do not wear a cast or wrappings around our skulls, you have no physical proof and some of you choose not to believe our stories.

But I can assure you that I did not withdraw from college because I didn’t feel like being there. I didn’t have surgery because it sounded like fun. I don’t take countless forms of medicine because I’m interested in poisoning my body.

So I will say again, one final time, and hopefully you all will hear me. Stop assuming you understand my pain. Stop assuming you know how much I’m hurting physically or emotionally. Stop assuming you could possibly understand what I’ve been through. And stop assuming that I am simply too lazy to do what is necessary to be healed. Twenty months I’ve dealt with this pain and I’ve learned to grow and adjust through it despite nay-sayers- the “haters” if you will. And I can continue to do so without your help because I have a stronghold of people that are so supportive it outweighs the many that are too weak to be a support for someone with such a life shattering problem. I also have a deep, committed faith in my God, and a knowledge that He is enough for me.

However, I thought it productive to society to give you all a bit of a reality check, so that next time you cross paths with someone who has been through a very real debilitating trauma, that you might not have any physical proof of, you might be able to take a step back and see them as something you don’t understand, but care enough about their well being to try. Maybe next time you won’t be so stubbornly pigheaded, but actually take the time to realize that someone else could be suffering in ways you cannot see and may never in your lifetime be able to fully understand. And maybe next time you’ll realize you don’t need to fight that lack of understanding. Maybe next time you won’t feel such a desperate need to reject it and call it false. Maybe next time you’ll have grown in wisdom, maturity, and courage, so that you won’t be so easily scared off by the unknown and confusing. Maybe next time you’ll have the incredible strength that is necessary to walk alongside someone with a brain injury and encourage them and love them and build them up despite the world seemingly crashing down around them.

Maybe next time…

First blog post

Hey y’all! I’m new to the blogging world, but I thought I’d give it a try. I love to write, so this is just another outlet for that passion. Also, I have been fighting a brain injury for a little over a year and a half now, and I’m getting a bit restless with the amount of ignorance the general public has on brain injuries, how they can affect someone and how to treat someone with a brain injury.

If you can relate I hope you find what I write on this blog to be reassuring, encouraging, and even insightful-if not those things at least you will know you’re not alone in this fight.

If you are reading this blog, but currently unlearned on the subject of brain injury and factors involved, I hope this proves insightful and helpful in how you might choose to react to someone who has experienced a brain injury no matter how minor or severe if you should ever encounter someone with such a struggle.

Thank you for visiting my page and I can’t wait to hopefully shed some much needed insight on the subject!

XO

God Bless

Rock on