Epilepsy is a Thunderstorm Inside My Brain

Before my epilepsy diagnosis, I loved thunderstorms but now they have me terrified. Lightning was beautiful. Thunder was calming. Wind was refreshing. Rain was peaceful. Until it wasn’t… Now I can never escape thunderstorms because one called epilepsy decided to stick around inside my brain.

Every misfiring neuron feels like lightning striking my brain. It is feeling a seizing coming but being unable to prevent it so I must wait for the inevitable- blacking out.

Every rumble of thunder is the slightest bit of overstimulation that sends me into a seizure. It is the overwhelming pain that comes along before, during, and after every episode.

Every gust of wind sweeps up my thoughts leaving behind memory loss and confusion. It is returning to consciousness following a seizure unsure of where I am or who the people around me are.

Every raindrop like a seizure drowns out the rest of the world surrendering me helpless with no cover to run towards. It is losing control of my body leaving me frozen unable to speak but still fully aware of my surroundings.

Those aren’t even the scariest parts of the storm. No, the scariest part of the storm is the fact that I am thirteen months post-diagnosis and today is no less difficult than day one. I have no more control today than I did thirteen months ago. And tried to control this I have- mostly I have fought to control what parts of this storm others see. Before epilepsy, I had good control over my health conditions and rarely ever needed help in managing them, so the only people who witnessed the personal details of my fight was my family. I quickly realized epilepsy does not give me an option of protecting my support system from the fears I was experiencing because a storm can and will happen at any time or place and often for no reason at all.

There is a moment from about a month and a half following my diagnosis that consistently plays in my head. Usually, I don’t remember my most horrible moments but this day I remembered everything which caused me to hit a breaking point because I finally recognized the harrowing damage this storm burdens others with. On this day, while I was being driven home from school by a friend I had a seizure in that friend’s car. This was not the first time she watched me have a seizure, but on this day the lasting effects of the seizure were some of the worst I had experienced. As we parked at my home I remember returning to consciousness in a great deal of pain, so I stayed in the car while my friend went inside to grab my mom. When my mom came out I tried to get out of the car but at that point, the pain was so bad I could barely walk. My friend witnessed my mom practically carry me inside while I cried out in pain with every step. This friend looked like she was about to cry as she was forced to watch me endure the worst of this storm. One I couldn’t protect her from. I felt so guilty for placing that burden on her.  She called me brave that day but I hope she knows how brave I thought she was. She didn’t tell me, but like myself, I know she was feeling helpless and scared. Very few people are prepared for a thunderstorm like this and even though she was ill-prepared she never ran at the sounds of thunder and that is bravery.

Maybe one day I will find thunderstorms beautiful again but right now I want nothing more than for this thunderstorm to end so that neither of us has to feel scared again.

An Open Letter To Myself on My Diagnosis Day

Hey Michaela,

Today is the big day. It is not your big day as in graduation or a wedding, nonetheless, it is still a big day that will change your life forever. Today is diagnosis day. The day you were given a diagnosis of Mitochondrial disease. Unfortunately, you have known about this possibility for months. Today is meant only to be a formality. I am sorry, you deserve more than this.

Your brain will try to protect you by convincing yourself they are wrong. You’ll beg for them to be wrong, but we both know that is an unrealistic scenario. You’ll try to cope by putting in your headphones and turning up the music in order to drown out the bad. You will do what you need to in order to survive. Here is the problem, you cannot live in survival mode for the rest of your life. Although that will not stop you from trying. You will continue to shut people out. I know you are trying to protect others and yourself, but it is not healthy. Knowing what I know now this is how I wish you would react: I pray you let yourself feel what you need to feel. I pray you let others hold you. I pray you decide to save yourself for once. You put yourself through more hell than necessary if you decide not to do these things. I am so sorry you will decide otherwise.

At my diagnosis appointment, my mom took a photo of me in the waiting room without my knowledge. I saw the photo for the first time several months ago while looking through photo albums on the computer. This photo is what prompted me to write this post during awareness week.

In writing this I have a responsibility to prepare you for the hurt you will face. You’ll feel defeated. Many days you will forget the good. You’ll promise others you are okay but secretly you cry alone in your room. You will scream in pain. You will be robbed of your teenage years. You will lose your independence. You will lose the person you thought you are. You will face your own mortality. I am sorry for all you must endure.

I also feel the responsibility to remind you there will be good within this diagnosis. You will find happiness. You will make it farther than expected. You will find someone who loves you despite your diagnosis. You will experience what you thought was impossible. You will help others heal through the words you share.

Lastly, I would like to recognize: You are not damaged goods.  You are brave. You are resilient. You are loved. And you are my hero. I am so proud of you!

-M

September 15th-19th, 2020 is Mitochondrial Disease Awareness Week.

To learn more about Mitochondrial disease: https://www.umdf.org/what-is-mitochondrial-disease/

An awareness post of mine that helps explain the diagnosis: https://chronicallyawesome23.blogspot.com/2015/09/mitochondrial-disease-awareness-week.html

Hamilton and Grief

*In case you are unaware of the musical Hamilton, it tells the powerful story of founding father Alexander Hamilton as he rises from an orphan living in poverty to a man who gains great political power during the American Revolution. I highly recommend watching the musical on Disney +, seeing the show on Broadway when it reopens, or at the very least listen to the soundtrack.*

Since the release of Hamilton on Disney + last month, I have spent an obscene amount of hours belting out the lyrics to my favorite songs word for word while watching the play. Some might say it is a slight obsession. To me, it is a welcomed pleasure to no longer listen to the soundtrack alone. While repetitively watching the play I noticed an emphasis on the death and grief that surrounded Hamilton. The plot includes a heavy conversation on the hardship and grief Hamilton had to overcome in his early life as he suffered a great number of losses from those who were close to him. These losses forced Hamilton to question his own mortality thus changing his perspective of the world. This portrayal of grief was shown in a way I could closely relate to as I too have experienced a number of losses in my early life due to my chronic health conditions. 

Unfortunately, my grief as a young person with a chronic illness is enormous. I grieve for the life I wanted to live and the life I thought I would be living. I grieve for all the things I miss out on due to my illness. I grieve for the anticipation of my own mortality. And I grieve for the friends who have died as a result of diagnoses similar to my own. Since my health deteriorated in 2012, I was introduced to a community of adolescents and young adults with serious health issues. This group of people quickly became more than friends and now I consider so many of them to be my family. I have witnessed more than 60 young adults die as a result of their illness. They were my family. I have watched my family die. It never gets easier. My heart shatters upon hearing the news of each loss. In the months since the pandemic began (mid-March 2020) seven of my friends have died due to their illnesses. Seven. The oldest was 30 years old, while the youngest was just 17. Their names so easily fall off my tongue— Jill, Ansley O, Ansley M, Carly, Nicole, Tasha, and Charley. Jill always lifted others up. Ansley O had a bubbly personality. Ansley M loved giraffes. Carly was the oldest of six and was the best big sister. Nicole always brightened up any room she walked into. Tasha cared for others amidst her own suffering. Charley aspired to do big things. Their deaths have sucked the air out of my lungs. They were so young, so important, and deeply loved not only by their families but also by our chronic illness community. I will always grieve these sixty-plus losses so heavily.

At a young age, Hamilton watched as everyone he was close to died all while Hamilton survived the worst. For him, it is almost as though death became a commonplace. Death surrounded Hamilton so much that it became his truth. A truth he had witnessed often. Death went from being an acquaintance to an unwanted house guest that would never leave. It was no longer a question of whether or not he would die young but rather a statement. It appears that Hamilton saw so many people die at a young age he felt it to be a kind of normal because of this he expected he would die at a young age like everyone else in his life. Death was always there and death was always looming despite it having been uninvited. Death has become an uninvited primary fixture in my life too. My illness has meant death is a frequent topic of conversation. It is not a question of whether or not my disease will take my life but when my disease will take my life. I watched as people who I considered to be part of my family die as a result of their conditions— many who had the same health condition(s) as myself. Like Hamilton, I never thought I’d live past twenty because most with my diagnosis won’t make it to their teenage years. The fact that Hamilton and I are alive is a miracle. Both of us question when our time will come because for so many years we have anticipated our deaths while watching those we love die. I not only anticipate my death but I also anticipate the possibility of my friends dying.

I no longer try to pretend death is not around. It is not a taboo topic of conversation. We must learn how to incorporate it into our lives in a healthy manner. I have developed a cycle of emotions I undergo when my friends die. This cycle is how I have learned to incorporate my grief into my life. It is one of the few ways I have been able to explain to myself why I feel the way I feel and how I cope with loss. First comes the devastating news. I am shaken. I begin to talk amongst friends within our community. If I did not closely know the person then I speak with those who did. I want them to get the news firsthand if they had not already received it and I wanted to know what that person was like from the perspective of others. We exchange a couple memories. Next, I briefly collect myself in order to share the news on social media about our loss. I want to honor the beautiful person who died. I try my best to support the community by promising if someone needs to talk then I am here. A handful of those in the community reach out wanting to talk, so I listen. I want them to feel heard. I want them to voice their feelings as they come to terms with the death of another young person within our community. I push aside my feelings because at that point in time they do not matter.  My sole purpose is to help others cope. Once things have quieted down I let myself feel what I feel. I find myself upset as the hurt hits me hard. I wonder why they had to die. I question why I made it to 22 when they never had the chance. I question my future. And then I pull myself out of that state of anger and devastation. I know I can’t feel that way forever. I have a community that looks up to me and needs me just as much as I look up to and need them. While this does not work every time I find it has given me the ability to take control as my emotions flow from one side of the spectrum to the next. I remember while I was boarding a plane home from New Zealand my Mom told me one of my friends who I was super close to died. I cried. I felt so helpless and alone. I couldn’t help others and I was unable to reach that community of support I so desperately craved. I couldn’t share her death with our community until almost a day later. I couldn’t help anyone. Instead, I was stuck on a plane with my own emotions. I was broken. Today I know that friend is gone but I still don’t fully grasp the idea that she is gone. It was a sudden and traumatic death that still clings to me today. It was not a healthy way to grieve and it is still a loss I am trying to come to terms with that loss in order to find a healthy way to grieve that friend.

A painted Hamilton rock made August 2020

The hardest part of my grief has been questioning my own mortality. The musical asks, ‘why am I still alive while all my friends have died.’ I wonder if there’s a reason for me to have lived as long as I have. I still think I should be the one who died not my friends. Survivor’s guilt is too real. It is an angry kind of pain. The kind of pain that makes you so angry that you want to throw something and scream. It is not fair I get to keep living life while their lives ended so abruptly. I graduated from high school. I studied in New Zealand. I spoke in front of 32,000 people. I made it through college. I met the love of my life and got engaged. Many of my friends can’t say they were able to do all of the things I have. I compare my circumstances to that of those who have died— Maybe I am older, sicker, we have the same diagnosis, or I survived the medical procedure that they did not. It doesn’t sit well with me to know there are babies much younger than me with my diagnosis who died from this disease while I am here at 22. They never had a chance. I know it is not possible to trade my life for theirs but that doesn’t mean I don’t want to. Why the hell am I alive? I ask myself that question a lot. It does not make sense as to why I have lived. I don’t think I am more deserving of living a long and good life as compared to the lives of my friends who have died.

But who is to say next time it won’t be me who dies? Which leads to me to my next question when will it be me? I don’t want it to ever be me. It can’t be me, can it? There are so many things I haven’t done. I haven’t traveled to Europe or Australia as I have wanted. I haven’t had a TikTok go viral. I haven’t finished writing my book. I haven’t been swimming with sharks. There are so many books I haven’t read and movies I haven’t watched. And I haven’t done enough for the community I advocate for. I haven’t left a meaningful legacy. I have not finished my narrative. I want more time. But I also know I might not have more time because of my circumstances. It seems like Hamilton felt that way too. He did what he could while he was there. He kept writing and fighting because he wanted his legacy to help teach others and to help them grow through the systems he put into practice. To him, the impact he would make in the future by finishing his own narrative is what mattered. I only hope I can manage to make such an impact.

I recognize many of the feelings I shared above are universal. What the chronic illness community goes through after each loss is unimaginable. Nobody outside of our circle will be able to comprehend what we go through nor do they want to. I don’t want anyone to feel how I feel but my grief is shared amongst a community of people— knowing that is the one thing that makes this pain easier. At least I am not alone in all this. I have friends with me through this chapter of my life. We have the opportunity to help one another. We often help each other until the very end, until our death. Our tiny community struggles to grieve our losses together. I don’t have answers to many of the questions I asked above. The only thing I do is know is that while this is horrific, painful, and gut-wrenching I would rather love these friends knowing I would lose them rather than never having loved them at all. These friends have changed my life by making this fight feel not so terrible after all. As said in Yorktown, “If this is the end of me, then at least I have a friend with me.”

I am so thankful Hamilton has brought me great solace while processing and understanding my own losses and grief. I have needed a sense of direction and healing over the last few months. While I know Hamilton will not be able to heal me I know it has been a good place to start.

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.

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.