Tuesday, March 31, 2020

One Year Since Brain Injury Entered My Life

A year ago my brain was destroyed… Okay well maybe it wasn’t completely destroyed but there are days it sure does feel like it. Over the last few weeks, I have been processing more on the emotional impact this has taken me. When most people ask me about my emotions they are surprised to find out I am in the stage of limbo. This is because since day one they have been heartbroken and devastated for me. However, that is a privilege they possess that I do not. They have the privilege to reflect on and grasp the enormity of my situation. They have been given the chance to not only let go and breathe. While I and those walking alongside me have been under a constant assault. Since last April our lives have been moving faster than a bullet train. We are more than overwhelmed. Each time I think we will get the chance to try to jump we wind up missing the platform. We are now forced to start over again. Otherwise described as the never-ending train of setbacks.

From Traumatic Brain Injury Support Group on Facebook

A few weeks ago, I was talking with one of those people who are walking alongside me. It was brought up about how the one year anniversary is rapidly approaching. So what should we do about it is the question? Celebrating the unimaginable does not seem like an appropriate response. And with our current social distancing climate that is even more inappropriate. Although, some cake would be nice... But in all seriousness, this day can’t go unrecognized. I have endured far too much pain for the day to be swept under the rug, so for my own sake, I need to acknowledge how hard I have fought. Others try to acknowledge this by telling me how incredible I am for making it through the last year. However, I don’t always believe them; all I see is the number of times I have cried, the number of times I have wound up unconscious somewhere, the number of times I do not remember events in my day, the number of times I have not been able to do a task that was once so easy for me, and the number of times I have felt like a failure.

No matter how much I plead, I will never be who I was before. And I know all too well who I was and what I did the day before the “day that changed it all.” It was the final day of my spring break, junior year of college, a Sunday. It was my best friend’s last day in town before she headed home. We went to Carowinds the day before and did not get home till late so we slept in skipping church, my mom took us both to get donuts, then took a trip to target. We had a final hurrah before she left at the local pizza shop where we ordered Mac and Cheese pizza. Hannah left and that was it. It was just me and my mom until she left for work the next day and I went back to my first day of classes. On Monday I went back to make it through the entire day without a single worry. I did not feel off at all during that day. The last thing I have a true memory of is sitting down at home to do homework.

Then in a matter of hours, my entire world was altered. Since then I have been left feeling trapped by this situation. I feel trapped by these experiences in which I cannot control because my brain is broken. My brain is learning how to work again. This is not something I will ever escape from pretending it never happened. Healing from a brain injury will be a life long healing process. Recovery has no end; it won’t turn out like a cookie cutter Hallmark movie. And even if it did that does not make the process to get to a state of recovery any easier. Brain injury recovery is hard and it is certainly not without suffering.

The last year has changed so much about who I am and what I intend to do in the future. Despite all this I know: I am still hurting. I am still struggling. But I am still alive. I am still here. And that is the real privilege.

Thursday, March 12, 2020

March is Brain Injury Awareness Month

     Public Service Announcement: March is Brain Injury Awareness Month. March also marks 11 months since the event that led to my brain injury. I am still unable to fully comprehend what happened to me on April Fools Day 2019. Yes, I know the details of the events that occurred on that day. For some odd reason, my blood sugar hit 23 causing me to have a seizure. This left me unconscious for roughly ten minutes and I finally came back while EMTs were stabilizing me to be transported to the hospital. However, I still am unable to fully understand what actually occurred on that day. How could this single episode, this one seizure, which lasted only a handful of minutes flip my life around like this? I don’t recognize who this young woman is when I look back at myself in the mirror and that is terrifying.

     My injury has left me at a complete loss. I have difficulties in social settings, abnormal sleeping patterns, my ability to read, see, and the concentrate is impaired. I struggle with uncontrolled epileptic seizures, significant memory loss, migraines, fatigue, emotional lability, heightened sensitivity to lights and loud noises, slurred speech, tremors, and the inability to regulate my body’s blood sugar level… The unfortunate reality is as it appears I will live with all of these things for the rest of my life. I hope things will improve once we get epilepsy under control but the truth is we don’t know.

     At the beginning of last summer, everyone believed my brain damage would not be permanent. I was making strides that led us to believe I would recover. Clearly, that was not the reality. Maybe we were living with rose-colored glasses? Or maybe we were naive? Everyone wanted to hold on to the hope that things would turn out to be okay. But I have learned the unfortunate reality about brain injury… Brain injury never goes away. I will never be okay. I won’t reach complete healing.

     It is hard to explain what it is like to live with a life-altering brain injury to someone who has never experienced one for themselves. I hope what I have to say about my experience helps you understand my world a little better…

I have sat in class staring at my sheet of paper blankly after forgetting how to spell the word ‘background.’ I cried.

I did not know I would unreasonably sob because I lost where I put my headphones. I never cry but in the last eleven months I have cried more than I ever have before and some days I don’t understand myself why I am crying.

I never thought my friends would be ripped out of my life.
     I wish I knew how many people would up and walk out of my life because they are so terrified I might have a seizure that they decided to quit wanting to spend time with me. I know some people can’t handle my fight. I know people are scared. Hell, I am scared too and that is more than okay. But you know what? I would rather have someone tell me that instead of shutting me out of their life without having said a word. 

     I am still the person I was on March 31st, 2019. I want people to remember that me. I still have that inside of me but the only difference is my brain is broken. It hurts seeing posts on social media. I look at these posts and think I should have the opportunity to be there too. I have missed out on more than you can imagine because the world assumes I am too sick to go hang out with them. I have been shut out and left out on far too many social events. These are the activities I crave and the ones that make me feel normal.
March 31st, 2019 with my best friend on the last day of Spring Break before heading back to finish up the spring semester of my junior year.
I never thought I would go from an A student to a student who is failing exams because my brain would affect my ability to learn like I once did. I now spend weeks having to write a paper for class even for my blog posts.

I didn’t think I would be terrified to spend time alone and that my independence would be taken from my hands.

It is incredibly frustrating to live when most days you don’t even remember what kind of life you are living. At the end of the day, I am unable to remember half of the things that happened.

Every day I feel as if a storm is occurring inside my brain. Every misfire in my brain feels like a lightning strike. All my thoughts are swept up by the wind and thrown around without care. The sound of the rain drowns out the rest of the world so I can’t focus on anything but the storm. It is the storm that is ripping my brain apart and I hate having to live through this experience. But this storm has me trapped and I have nowhere to run.

I was never good at asking for help before this but now whenever someone asks me what I need my mind goes blank.

However, the good news is we adapt to our newest set of circumstances.
     Everyone adapts in order to survive, but we don’t always see the small adaptations we have to make in our lives because they typically are not as monumental as a brain injury. Brain injury is an adaptation that completely alters everything. Adaptations are not supposed to be comfortable. I will be the first to tell you my experience has not been enjoyable. It has filled me with so many new questions, unknowns, and terrifying conversations. I wish I knew brain injury would alter my life in the way it did.

Thursday, January 16, 2020

When Chronic Illness Interrupts Your Life Plan

     I have come to the conclusion the hardest and most encompassing problem sprung upon me since my recent brain injury and epilepsy diagnosis is my independence or lack thereof. In turn, this has also led to the loss of my identity. Only now as I find myself struggling to endure this pain for a second time I have come to realize I can try to tell myself I have been here before because in part that is true, but the truth is enduring this pain for a second time will always be harder than the first time ever was.

     The first time I endured this kind of heartache, I was fifteen. It was not easy having to start over again in the midst of high school. I had all these adults in my life asking me questions about what I wanted to do in the future. These seemingly innocent questions are standard for most people of that age group. Prior to the time when I was sick, I could easily answer their questions. I had a plan. It was a plan that was made when I could still play the sport I loved since I could walk, when I could get out of bed in the morning without any pain, and when I did not struggle to make it through school. However, following my health decline, I often wondered if the adults asking me these questions thought about the implications of my diagnosis? Did any of them realize I had recently been told it was uncertain if I would even have a future? It was at the time of my diagnosis my answers to their questions were forced to change, and by doing so, it altered the person I thought I was becoming into the person people have come to meet, know, and read about today. This felt like I was being taught how to swim by being thrown into the deep end of the pool without a life jacket. Yes, I did eventually learn how to swim, not because I wanted to but because I had to. I was not going to let myself drown. My life needed to continue so I adapted, I kicked my feet so hard, and I fought like hell to create a different kind of life because although different than the life I had before, I could see it was still a life worth living.

     But back then it was easier. I had a backup plan. I had other activities and other hobbies I enjoyed ones I could still partake in. I could still read all the books I wanted, I could focus in those AP classes I was taking, and I realized I enjoyed hanging out with my friends at church so much that I wanted to make more time to do so. I found new hobbies too… I fell in love with photography, advocacy, and writing. If I no longer had my athletic abilities, then at least I had my intelligence. I soon understood my life could be successful, interesting, and fulfilling even if that life was not the life I planned. When my original life plan faded and my back up plan became my present life plan, I made the conscious decision to focus on my life now. I did this in an effort to cope with the understanding that the plans I wanted to exist were never meant to be mine in the first place. I was expected to accept what was and make a good life out of that no matter how awful my situation felt. I am not going to paint you a pretty picture and tell you everything finally fell into place because it didn’t. This only happened after I fell apart for a little while, and trust me— it was far from pretty. Fast forward to the now I am grieving the person I once was for a second time. In the present moment, I have lost my ability to drive, the freedom to travel, my memory, my ability to concentrate on schoolwork, it is becoming harder to function physically, to comprehend and enjoy the books I read, and my ability to spend time alone. The awful thing is most of the time, it seems my brain is barely able to comprehend the little things. Today, what abilities I have lost is much more and this hurts. With all the abilities that have been stripped from me over the last nine months, I no longer feel whole. I feel so different I am not sure there is even a me that exists anymore. I know not all of these feelings are permanent— My emotions are still raw and real as this is only the beginning of my experience as a person living with a brain injury. My process of healing is barely in motion but I already know I will live a life beyond this despite all the voices in my head trying to tell me otherwise. I learned to live with my circumstances the first time, I know I can learn how to live with another set of circumstances again, but first I have to work my way through grieving the loss of all that was forcibly taken from me.

     In another attempt to cope with what I was facing, I couldn’t bear to think about needing another backup plan, so I let slip to the back of my mind. I was saving the issue for later because my wishful thinking hoped I would never need another plan. On the outside looking in, some people might call that naive to look the other way given my diagnosis, but it is easy to say those things when they aren’t the ones in the water trying not to drown. This battle is so heavy I am already barely keeping my head above water. I can’t imagine how much harder this life would be if I let the thoughts of what I could lose next weigh me down. Despite this, what most people do not realize is I have spent the majority of my time looking at life from a realist’s perspective. My life has been calculated by numbers, treatment plans have been made after using cost-benefit analyses, and we have used some of the most strategic and intentional planning to increase the quality of my health. I am far from ignorant regarding the likelihood of my declining health. In an effort to protect the spaces in my life where the numbers, treatment plans, and analysis processes do not reach such as my emotional well-being I have chosen to live beyond these constructs. I am more than the binders of medical records I have collected over the years.

     However, these are also the coping mechanisms that have led me to cry about the person I used to be and the person I have been forced into becoming. A person who feels so different than she once was that she now questions who she even is because there is no way this stranger could ever be me. I will never be the me I once was— that person has now ceased to exist. This can be true for all people because we are in a state of continuous change. There is not one person out there who has the ability to go back to who they were five years ago or even five minutes ago, but the kind of evolving identity I have experienced is far from ordinary. Once a person reaches emerging adulthood, the identity by which they have chosen to identify with becomes fairly stable. This allows a person to establish a sense of continuity and security— a luxury I will never have. The trauma, the fear, and the chaos of all that has happened to me changed me in ways that will never allow me to feel safe again. I will always want back what I lost. I will always be angry that the life I want to live is not mine. I will spend the rest of my life grieving those losses because this is not something you get over. This is not the common cold. I won’t get better in a few days or even weeks for that matter. My recovery has no end. I know I have never been the same since I was thrown in the water, but maybe that is a good thing… Maybe I was thrown into the deep end of the pool to be reawakened by the waters. I am being reconstructed as someone new so I will become a completely different person to meet the needs of what the world needs now. Since I came out from under the water, I have found myself continuing to grow each day. Knowing that I believe I will be okay because what is the point of life if we don't learn, grow, and dare to achieve what everyone else deems to be impossible a possibility.

Wednesday, November 27, 2019

In The Fight of My Life

For the last several years, I have been trapped in a boxing ring. The opponent? Twice my size and has been throwing one punch after another until I fall down and hit the ground. In the beginning, it was easier to get back up each time after I took the fall, but lately, my battered wounds and aching muscles have made it so much harder to get back up again. I am bleeding, hurting, full of tears and I look radically different than when I entered the ring.

More recently, I began to have an increase in seizure-like episodes, which have also since progressively worsened in their severity. Presently these seizures are happening multiple times a day. I have not had a seizure free day in weeks. Originally believed these episodes were related to the brain injury I developed as a result of the hypoglycemic episode which caused a seizure back on April 1st, 2019. However, my neurologist had other diagnoses in mind so following extensive testing I was diagnosed epilepsy. This diagnosis has dramatically changed my life. I can no longer drive because of the seizures. The medication I take to treat the epilepsy is not stopping the seizures, instead, it has only left me with a number of debilitating side effects. I can’t be alone for an extended time out of fear I may have a seizure and no one will be there to help me. I can’t travel. I should be with my friends doing all of the fun things we planned together, instead, my friends spend time together without me as they are afraid of what could happen if I had a seizure. I am merely fighting to survive and the only way I can live is by relying on the rest of the world.

This dependency upon others for the most basic of needs has left me feeling awfully vulnerable. And I HATE it. I am a wildly independent person. That’s an understatement. I would rather do anything than ask for help from those around me. This has nothing to do with the people who surround me. I know my true friends and family who make up my support system love me endlessly. Countless times these people have proven to me they intend to stand in the boxing ring with me through it all— to them, I am not a burden, but no matter how many times they say this, I still don’t fully believe these words to be true. Honestly, I am not sure why this is the case… Maybe it is because I have already lost so much, I am afraid of losing even more because people asking for help invites people in to see the broken parts of me I so easily hide by living life all on my own. 

When I step into the boxing ring to fight this fight without help then I am the only one who has to face the punches, except my current situation requires me to bring other people into the boxing ring with me. I have to bring my friends and family into the boxing ring with me knowing they too will face the same pain from those punches that have left me battered, bruised and broken on the ground. It sucks asking the people you love to join you in the boxing ring. I feel horrible asking my support system to carry my burdens and my hurt. No, I do not directly hurt others by inviting them to fight with me, but by inviting them to fight with me I know they will experience my devastation and heartache. Maybe that’s why I have rarely asked for help? I want to protect my support system from my devastation and heartache. I highly doubt when they entered my life most of them realized boxing would quit being a spectator sport, but very quickly they were forced to play a sport they did not necessarily ask to be apart of, yet most of them have still fought with me anyways. In the beginning, my support system started out as spectators to my fight there were a number of emotions they never had the chance to experience. Yes, people see the emotions I face from the outside looking in but life is so much different when you sit in the audience versus when you stand in the ring. But now that those people are in the boxing ring with me they see how the opponent or my disease affects everyone involved in my care, my family, my relationships, and my friends. I am not the only one who looks radically different from the start of the match.

But isn’t that what love is? Love is sticking beside someone through their worst. Love is proving to a person you will be standing by their side supporting them through their struggle. Love is growing together, carrying one another’s burdens and changing each other’s world. So thank you to those who have loved me through all of the devastation, heartache, and in the times when I felt like I was unloveable, a burden or didn’t need anyone in the boxing ring with me.

Thursday, August 22, 2019

How I Reacted To My Terminal Diagnosis As A Teenager

     I was an explorer, running through the ancient city at a strong pace, when I stumbled upon an obstacle in my path causing me to be captured by the monkeys that were chasing me. I was just short of beating the all time best amongst my friend group in the game Temple Run, because after nearly four weeks in the hospital I had become a pro. It was a knock at the door which threw off my concentration. Although this was pretty standard, considering the fact that medical staff walked in and out of my hospital room all day, there was something different about this knock. It was "the knock" everyone with a story like mine talks about. Whether it be a knock, a phone call, or the ring of a door bell, it marks a pivotal moment in which everything that person knew to be good, safe and true has been altered. For me that knock at my hospital door meant a terminal diagnosis at the age of fifteen. In the many moments since my diagnosis, I have learned we seem to throw the big picture out the window when our brains have been given this kind of life changing news. I didn't have the capacity to think or focus on the future of my life, so instead my brain blurted out the first thing I had the ability to think of.
     So what did I say? The first words to come from my mouth are not ones most people would expect. I said, "I'm sorry, Mommy." I am sure the question going through most of your heads is, "Why would she feel the need to respond with that?" And it is a fair question to ask. To be honest, I was never able to understand why I responded with what I did until I saw it in the movie, Five Feet Apart. In case you've never heard of the movie before, it is about two young adults, Stella and Will, both diagnosed with Cystic Fibrosis who fell in love while receiving treatment in the hospital. However, due to their diagnosis they must keep their physical distance from each other because they could make each other sick. In a specific scene of the movie, Will and his mother learn from a doctor that the clinical trial drug has failed to improve his overall health. We watch as Will, a seventeen year old boy pretends like the news did not hurt him that bad and like myself, we saw him crumble as he apologized to his mom for failed treatment, for his disease, and for being a burden. Will truly believed he had control over the final outcome, that he not only failed himself, but also his mother and his entire medical team. It was this scene that paralyzed me, because I knew in that moment exactly how his character felt.
     I, too, said I am sorry- not out of fault, but rather out of the deep pain I believed I was projecting onto others because I failed to recover. Although no one can place blame on me for my diagnosis, I knew the only reason everyone was suffering was because of myself, the financial stress, the separation of our family while I was in the hospital, the emotional devastation of such a diagnosis, and our entire life was forever altered in a matter of minutes. I felt like they needed to know how hard I pushed my body to try to function normally, but the disease was taking over. I could not win. I was losing, and for that I was very sorry, so that is the only thing I could muster up the courage to say, "I'm sorry, Mommy." When people come to me curious about how I responded to my diagnosis, I come to learn many have it all wrapped up in their heads how they believe they will respond when given news of a diagnosis. Sometimes these people even tell me I responded incorrectly to my own diagnosis, whatever that is supposed to mean... When we face a tragedy, we are thrown into this new terrifying phase of what is supposed to be our life and told to make do with it while the rest of the world expects us to have a sensible reaction to something that isn't sensible to begin with. They say somehow, in some way, I should have responded by immediately jumping into fight mode by asking what my chances are, the protocol being established for my treatment, or another beneficial question along those lines. I believe they expect this because the rest of the world is still carrying on without their life shattered at their feet. They have the luxury of rational thinking, an emotion that trauma deprives of us.
     Going back to the app, Temple Run, imagine the game as the experience of learning of and reacting to life-altering news. The game begins slow as the explorer runs through the city but as it continues the explorer's running pace becomes faster as they continue through their day to day life. For the explorer it seems like out of nowhere a couple rocks appear in their path causing them to stumble, like the unexpected diagnosis which uprooted my life. When the explorer stumbled on the rocks they might have had the breath knocked out of their lungs. Still the explorer must keep running before they had the time to process what hit them because there's a game to be played, similarly to how there's a life to be lived. What they don't realize is that we don't get to be the explorer who can take a break by pressing pause until we are ready to play the game again. We don't get a break to figure out how to respond to the news, we just react. Most believe they will respond by breaking down sobbing how they don't want to die, how this is not fair, that they will ask a hundred questions regarding the outcome of the events, or something similar focusing on the big picture. Instead our responses might be brief, we might be so numb we don't react at all, we could be speechless, unable to express appropriate emotions, or like myself, we might apologize for something that was never our fault to begin with. You are not required to be inspirational throughout all the shit you have been forced to endure.The reality is when you are struck with the weight of the news regarding your tragedy, it uproots everything we know as good, safe, and true leaving you with nothing. It is normal to feel completely lost after receiving life-altering news, so don't you ever let anyone make you feel otherwise.
September 2013: 3 weeks into hospital stay that led to my diagnosis