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

Thursday, July 25, 2019

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.

Monday, June 10, 2019

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.

Thursday, November 15, 2018

6 years...

November 16th, 2012...

6 years ago I became dependent upon a feeding tube. They told us this would be a temporary thing; that I would stop eating food entirely for three weeks, then we would slowly reintroduce food until we could find which foods I could tolerate and which foods were making me ill. They thought the process would take three months at max, but two months in I only had three safe foods and none of them could sustain me nutritionally.

Here we are six years later and if you have read my blog before you would know, the whole idea of temporary is obviously far from the case... In fact, my health is now worse than it was six years ago. But today I do not want to sulk in the sadness of what I thought my life was supposed to be like. Today I want to celebrate what was made possible because of this day six years ago. I was 'lucky' when I had my feeding tube placed because my brother already had a feeding tube so my family was well connected to the online community support groups. Shortly after having my tube placed, I realized there was no online support group specifically for teenagers with feeding tubes. The need was there but no one was stepping up. I decided I couldn't wait for someone else to put forth their time to create a safe space where teens and young adults could realize they aren't the only ones having this experience, a place where they have friends who simply 'get it' and a safe place they can vent about their feelings away from their parents.

Because of this day six years ago the discussions began, that allowed me to create the "Teens with Feeding Tubes" online community. On November 26th, 2012 the group was officially launched. Currently, our community has roughly 350 members, from nearly 20 countries, and has served more than 500 young people in six short years. Unfortunately, in those six years, thirty-seven members of our group have died due to their chronic illness. It's the most heartbreaking part of being in this group. We have chosen to seek out others in situations similar to our own because we know how devastating it is to feel like no one understands what we are going through, but we would rather love them knowing our hearts will break than never knowing them at all. It is a privilege to have known them. It is a privilege to have loved them.

Today I made a post asking members of the online group to finish the statements and the answers blew me away. They reminded me how important the work I do is even on the days when I think I have nothing left to give, even on the days when I wish I never got sick in the first place and even on the days when I think I am not doing enough to make a difference. They remind me that what happened to me six years ago today was not a mistake. I hate the "everything happens for a reason" cliche just as much as the next guy but if I had to endure some hell for a little while to help make someone else's burdens lighter then it is all worth it.

With their permission, I wanted to share some of their responses with you:

"This wonderful group has given me confidence, knowledge, a laugh on a bad day, a virtual hug when another person is taken from this world by different illnesses, inspiration, a distraction from pain or just life in general, a smile when needed most, strength, but most of all hope. This group has given me hope of what I can achieve like going to school, being a normal teen, or go to college. Hope that maybe my health will improve one day but also that if it doesn't imporve that where I am right now is okay and there is hope." - KB
"This group provides me with a support system where I don't need to explain. Everybody just knows... And that is the most priceless gift God has given me." -TM
"This group has provided me with the confidence to bear my tube unapolgetically." - EK
"This group has brought me something I would have never expected: comfort." - ER