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.

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.

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

I Do Enough.

I do enough even on the days I don't feel like it. Repeat that and remind yourself of just how worthy you are. Unfortunately, I don't always automatically accept this truth as confidently as I should. It is a deeply rooted struggle I have held within me for years. Most days I feel like I could be and should be doing so much more than I actually am. I believe I could always bring more awareness for a cure, work harder in school to get better grades and provide more support to my friends and family. Yes, I am sure that sounds ridiculous to many who are close to me or who have followed my life story because you may think I have done more than my fair share but it is true. I say all of these things even though...

• I write a blog read by thousands across the world to advocate and change the treatment in healthcare settings for adolescent and young adult patients.
• At fourteen I founded an online support group for teens and young adults with feeding tubes so that they could feel as though they are not alone in all this.
• Almost seven years later that support group has served and is still serving more than five hundred young adults from nearly twenty countries.
• I still maintain a GPA worth celebrating while achieving an undergraduate degree in psychology while many with my condition are unable to attend school at all.
• I am loved by my friends and family for being the person I am without any exceptions.

Now please hear me out. Even though I do not believe I am doing enough, I am still proud of these very things. Those accomplishments were achieved because growing up my mother ensured I worked hard to be more than my disease. By all standards my mom wanted me to live a typical life, so she pushed me to fight beyond what I was feeling in order to do what I could when I could without allowing myself to be held back. (And mom if you are reading this please know how I feel is not due to any failings on your part. You did exactly what you should have done. You tried to give me a relatively normal childhood. You gave me a sense of normality and for that I am thankful. It was exactly what a mother was supposed to do.) I never once used my disease as an excuse for a reason as to why I could not do XYZ. Early on it was made known to me that my disease was not a barrier for my dreams, which is an important distinction for a young person with a chronic health condition or disability.
However, pretending one is able to ignore their disease can also be detrimental because it makes that person believe they are supposed to have it all together in the same order as their able-bodied peers. Somehow I fell for this twisted mindset. I fell for the idea of how I thought things were supposed to be and thought if I could keep pushing through, then I too would be able to meet those same standards as my able-bodied peers. This belief made worse by the thought I could always be doing more if my body was not putting limits on me, my perfectionistic personality coupled with the comparisons I make of myself to my able-bodied peers is why I struggle so deeply with doubting my abilities. This way of thinking made me believe I needed to prove to everyone else that I could do what my able-bodied peers were doing. It is why I am the kid who went to take finals while falling into the downward spiral of septic shock, that could have easily taken her life. It is why I felt guilty for postponing an exam after being diagnosed with a brain injury. It is why I never let myself take a break from trying to accomplish my goals even when my health is trying to pull me under. It is why I am the person I am today. Through all of these things, I have come to realize I will likely never measure up to those same standards held by my able-bodied peers and that is okay. Maybe if I did not get diagnosed with a brain injury I would have done better on that exam but that is not how my life happened. I need to quit thinking I was cheated of something I thought I deserved because I thought my life was supposed to be different. That's not true. My life was supposed to be exactly how it happened and I happened to get sick. That's just how things worked out. So instead of focusing on doing things the same way as my peers, First recognize that my disease does not block me from reaching my dreams. Then acknowledge the limitations my body has placed on me rather than pretending like they do not exist because I can still make a difference even with a little extra help along the way. My work is no less important because I need accommodations. What work I am doing is still filled with value. Celebrate the accomplishments in your life, even the small ones.  And remind yourself just how worthy you are, even on the days when you don't feel like it.

I Can't Be Fixed

For those of you who are unaware on April 1st I suffered a seizure caused by a blood sugar reading of twenty three. (If you aren't up to date on your medical information that’s the lowest of lows. ) Thankfully I was not alone when this occurred, my Mom was immediately able to get me the help I needed so I was only unconscious for ten minutes, but unfortunately I did not walk out of this event unscathed. I have been left with a brain injury that has affected my ability to read, see, memorize, concentrate and speak appropriately (and more). More than two months later, we have continuously struggled to keep my blood sugar at a stable level and medical professionals have been unable to determine how and why this has only recently begun to happen to me. While trying to figure out how I was going to proceed with recovery I decided upon pushing through the last few weeks of my junior year of college and then worry about my health. I told my medical team, friends, family, professors, followers of my story and everyone alike that this would be the summer of fixing me; the summer of fixing me in order to make me, me again. However we are now a month into summer break and I have not seen any signs of fixing occurring here. Only now am I beginning to realize that “being fixed” is not a real thing?

Heading into this summer I thought I was repairable. I thought there was something out there that could make me into the person I was before this traumatic experience happened to me, something that would make me feel like me again because through this whole brain injury thing I have not felt like me. However I have since learned I can try to heal and mold into a version of my self pre-trauma, but that replica will never quite be picture perfect, just like a vase when one glues the broken pieces back together.

Have you ever heard of the logic you can’t fix what’s not broke? I first believed I can't be fixed because I am not broken. There is nothing wrong with me. I am not damaged goods. I am not the fragmented pieces to a mirror after it has been shattered. I am an almost twenty one year old flooded with dreams and plans to THRIVE, living within a broken body failing almost as fast as ice cream melts in the summer sun. In general that’s one of the hardest parts because I know I am not broken, but I know for a fact I am not a typical young adult. This disease is the iron shackles on my plans to explore what this world has to offer, while also keeping me caged by the physical limitations I have been sentenced with.

Since my brain injury I have been battling back to become a fully functioning human. The unfortunate news is that living with mitochondrial disease the only thing that most doctors can tell us for certain is that my my health will only continue to decline. Mitochondrial disease is a degenerative condition, meaning as time goes by the condition worsens. I already have multiple organ systems that are dysfunctional or failing and we have known for quite a while that it is only a matter of time before we saw other organ system involvement as well.
As I mentioned above medical professionals were unable to determine why my blood sugar has repeatedly dropped so low without explanation. I was sent to a specialist. My last appointment was one week ago. We did a good number of blood panels and unfortunately nothing remarkable appeared that would explain what I am experiencing. We had one of those hard discussions that nobody wants, especially before nine on a Monday morning even more so just a couple weeks before your twenty first birthday. In simple terms since we had no other explanations for what has been causing this she’s fairly certain my endocrine system, specifically the blood sugar regulation portion is now dysfunctional and/or is beginning to fail as a direct result of my mitochondrial disorder. This means that there’s not a permanent course of treatment for any of my low blood sugar episodes like we hoped. Again this is something that cannot be fixed. I can only adapt my current life in order to cope with what I have been given. We hope we can get this to a point where my blood sugar episodes become less complex to manage.

Despite adding yet another organ system to the never ending list of failing body parts I have, I was given a glimmer of hope at this appointment! Since being out of school for summer I have been able to rest my brain, get a decent amount of sleep and not be stressed all the time which has absolutely helped in recovering from the brain injury. We were originally led to believe that the damage to my brain would be permanent however I have made huge strides since being out of school and my doctor is hoping this will not be the case. God willing I should be functional by the time my senior year of college starts at the end of August!

Following my injury I did not leave the hospital fixed, nobody does that’s not how life works, but I did leave the hospital changed. The old me is gone and for better and for worse I am a different person who has adapted to my newest set of circumstances.