With Depression, Anxiety, and Lyme Disease; My Dream is Survival
by Max Noir
Listen to Executive Director Gabriel Nathan read this post aloud:
Once upon a time, I was a straight A student. I didn’t study for anything, as school came easily to me. After school, I went to karate class, soccer practice and I took drum lessons. I was in student council, and was the president of our honor society. With the sudden onset of my epilepsy and chronic Lyme, the Max everybody knew went somewhere else. Quickly and abruptly, I required fourteen to eighteen hours of sleep every night—just in order to function, which meant that I spent much of my class time sleeping at the nurse’s office. Not surprisingly I started failing my classes. My nights of sleep showered me in treacherous nightmares, as well as an influx of quick dreams that were so mundane that I began to lose the ability to discern what was real from what was dreamt. I found myself newly unable to retain almost any bit of knowledge or fact, including the words in books, and words spoken to me.
Unable to grasp success at school, I begged to be referred to a psychiatrist in hopes of being diagnosed with ADHD, after having resorted to taking a stimulant a few times, illegally, just to pass high school. I felt it was not an option to properly prioritize my health, mental and physical, while fulfilling the basic expectations of society, such as going to school and taking showers. After a nine hour, comprehensive IQ exam, I learned that, overnight, I had lost not a few, but twenty-one IQ points. I ended up not being diagnosed with ADHD, but with signs of cognitive decline disorder, and was prescribed the stimulant anyway, as a result of my begging. My feelings of helplessness were haunting and unrelenting, and I felt my body and mind go into a state of survival, doing whatever I could to meet the world’s expectations of me. I quickly learned that the stimulant only masked my symptoms, so I discontinued my use of the stimulant. In order to succeed in any area of my life, I had to beg my superiors for special accommodations, extra credit, and empathy as I slept my way through keeping my head above the water.
The first anti-seizure drug that I took spiraled me into a deep state of depression. My days became a blur as I fought to distinguish reality from dreams. I was burdened by daily anxiety attacks and, eventually, I became suicidal. After writing a letter to my family expressing my desire to end my own life, they rushed me to a new doctor who immediately switched me to a different medication. While my mental state began to feel lighter almost immediately, a couple of weeks into weaning onto the new medication, I was hospitalized again with a rare and dangerous allergic reaction to the medication. In addition to my allergic reaction, I was having seizures in and out of school almost daily, sometimes up to three in one day.
To my bewilderment, staff at school accused me of faking seizures. After everything I had been through and was going through, having to fight myself just to brush my hair or stand up, being accused of making up my seizures was one of the hardest kicks I had ever experienced. I bawled in my headmaster’s office, unable to find any words to respond with, unable to organize my flood of emotions. With that also came shame and embarrassment that I was unable to stand up for myself in that moment. This was the peak of my feeling of helplessness. While my family was extraordinarily supportive towards everything I was going through, it is impossible for anyone to understand what it feels like to have chronic Lyme disease, which has been nicknamed, “The Invisible Disease,” supplemented by a sudden onset seizure disorder.
After transferring to a new school that was dedicated to students with unique circumstances, I was still facing a huge lack of support from staff; however, I was able to make it through and graduate. Never before had I thought that graduating high school would end up being my biggest source of relief. After much thought, I decided that I was not in the mental or physical space to go to college immediately, which had always been my number one dream. While I was filling out an application to join AmeriCorps, I received a letter from a school called Global College. It was an undergraduate program that would allow me to travel the world for the entire four-year period, while researching and learning through experiential methodologies. Immediately, I felt like this program was built for me, and I announced that I would be going to college after all.
Full of excitement and wonder as I was about to leave my home for the first time and embark on the journey of a lifetime, I felt hopeful that this would be the change that I needed to put an end to my mental health struggles. It didn’t take me very long to understand that these travels, like the stimulant I had used in the past, were also a pleasant mask to my symptoms, but they could not address or heal the roots. As the cognitive struggles that I began to face in high school followed me to Central America, my go-to methodology for completing schoolwork became procrastination. Out of chronic anxiety and inability to retain information, I quickly readopted my dark cloud from the past as it hit me that I was drowning. This is when I developed the conclusion that being a scholar was no longer in my cards. My dreams of working for the Foreign Service, and traveling the world as a diplomat could never come to fruition if I was unable to read. Within a couple of days upon having this realization, I dropped out of college, and flew home. Luckily, my teachers gave me a six-month incomplete extension for me to finish all of my final assignments during, and after fighting tirelessly to complete them, I finally paid someone to help me finish writing the assignments that required research. Having no intention whatsoever of returning to complete my degree, I went to work. I also entered into some romantic relationships.
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Throughout my nearly ten years of being sick, I had multiple long term, romantic relationships. My first one, which lasted three years, was with a man who I lived with immediately after dropping out of college. While our relationship seemed nice and loving on the surface, I was not in the right place, mentally or physically, to have a romantic partner. A pattern that I have noticed amongst all of my previous relationships in the last decade was my inability to sufficiently contribute as a partner. I have always regarded myself as a very caring, attentive source for emotional comfort and support to my loved ones, though I was never able to pull my weight around the house. I never cooked, I barely ever cleaned, and I spent just about any free moment I had watching Netflix or sleeping, as I felt as though those were literally the only two things that I had the mental and physical energy to do outside of work. When I would hear my partner’s car pull into the driveway at the end of the work day, sometimes I would wake up and open my computer to hide the fact that I had just been sleeping from them. I was in a constant state of embarrassment and paranoia, with a deep root of shame in my ability to successfully live. Imagine being a young adult, and dating another young adult, and the toll it must have taken on them to come home every day to see their romantic partner, doing nothing but sleep. I felt angry and disappointed at my partners for not being able to be there for me better, and perhaps they could have been, but years later, I see that they shouldn’t have had to be. Like anyone, I wanted love, but it was not the appropriate time or place for me to seek a serious, mutually-supportive relationship with anyone, as I was unable to fulfill my part. At this point, my feelings solidified that all of the normal aspects of life, including education, work and relationships were out of my cards, and my whole life was about survival.
Having found contentment with the fact that I was now working with an altered brain, I entered my semester with self-advocacy. Sitting each of my professors down, I told them my story and explained all of the methods that I have found are the most affective in aiding my success in academia. With support from my professors, we found alternative ways for me to retain information and present my findings in ways that were more obtainable for my new styles of learning. For the next few years, I continued on, as I was, able to pass classes, but still in constant battle with depression, anxiety, and spending all of my spare moments in bed, or partying. These things were my coping mechanisms, and distractions from how terrible and incapable I was feeling. While I was immensely proud of my new found skill in self-advocacy, I was still living with the unrelenting feeling of my inability to accomplish anything without leaning heavily on my support systems.
In my last year of college, I was in China, which I fell in love with immediately. Even though I felt like I had found my home away from home there, along with a community of friends, a new romantic partner, and also a career, I still found myself plagued by my lack of mental and physical energy, resulting in a lack of motivation. It became clear that my Lyme disease was progressing, and new diagnoses began to stack on top of each other. I stopped being able to physically go into work or class, and my partner at the time had no idea how to help me. It became clear that I needed to find a way to put an end to this once and for all before it progressed to a point of no return. I knew that, if I didn’t stop my illness in its tracks, I’d lose my ability to succeed in anything, and that I would no longer have a desire to be alive. I was already starting to feel my desire to fight diminish again by the day.
When I finally returned home after a year and a half in China, I found my fifth Lyme disease doctor. She specializes in Chronic Lyme disease, and treats aggressively. With open arms and a sense of hope paired with mental numbness, I started on a three-month long journey of different antibiotics, and after three months, my monthly bloodwork came back completely clear of active Lyme bacteria. It still has the potential to come back, but by keeping my body and mind strong and healthy, I can maintain my health. Since then, I have lived with a constant anxiety that the bacteria will reactivate, though I now have a new found sense of hope. Within a few months of being cleared of Lyme, I had a routine EEG to monitor my Epileptic activity. For the first time in almost a decade, my EEG came back 100% seizure activity free. Every single doctor I had seen throughout the years told me that the connection between Lyme disease and my Epilepsy was either impossible or unlikely. I always intuitively knew that they were connected, and while there is no proof for this, I stand by my intuition, and the unlikely coincidence of the timing of onset, and cure for them both. It was incredibly draining and numbing to have my physical and mental observations be consistently dismissed by professionals over the years.
About half a year after being cleared of both illnesses, we are brought to today. I am quarantining in Rio de Janeiro with my new, and mutually-supportive romantic partner. I work remotely as an executive at a Virtual Reality company. I am seizure free and Lyme free. I can read again without issue, and clearly, I am able to write again. I feel strong, capable, and inspired. I finally remember what it is like to have the ability to feel happiness without awaiting illness, and to have dreams that are possible to work towards. I do consistently fear the return of my illness, which adds a lot of anxiety to my day to day life, but lately it feels a lot more manageable with the new sense of hope that has come with my physical healing. While I do not wish what I went through on anyone, my mental and physical health journey has helped me become the strongest, most empathetic, and most driven possible version of myself, and I am forever grateful.