I had to grieve a life I might never have, at too young an age. I had to accept a future I didn’t even know could happen. A piece of living with epilepsy and surviving a pediatric brain tumor not many folks speak on, is the grief. A grief of what you lost, and a grief of a life you know might never happen. Every case is different, every story is unique, but there is always something you lose to your diagnosis. My epilepsy happened to primarily come from my brain tumor found at the age of nine. A dysembrioplastic neuroepithelial tumor (DNET). A name that just rolls off the tongue. My journey is a long and complicated one, with both powerful wins and heavy losses through the years. I lost many freedoms, such as anything to do with speed, heights, water, and the privacy of being alone, all in the fear I would have a tonic clonic seizure and injure myself and or someone else. After testing, medication, many breakthrough seizures, and a sub resection surgery of the tumor later, I am safely on medication that grants me my freedoms back. I can drive, work, travel, and live on my own, none of which I take for granted. One day during my first semester of college in 2023, my neurologist presented the opportunity of attempting to go off my seizure medication. At this point in my life I was around six years seizure free, basking in college life, studying, making friends, and attending events. At first I said no, I didn’t want to give anything up for a “maybe this will work”. I danced with the decision for weeks, and I realized that the chances I would relapse were slim, so I decided to go through with the process. I surrendered my freedom of driving, working a job, and of course heights, speed, and water. I was eager to be off of the medication. A six month process started and ended at five and a half months. One night while I was visiting home I had a tonic clonic seizure in my sleep. I woke up and immediately felt the physical aftermath, I was utterly devastated. There was so much time and effort in weaning off meds that disappeared in two minutes. My body was subjected to a major trauma physically and mentally. I felt that wave of grief pouring into my spirit. The following went as expected, ER visit, get back on meds, and three more months seizure free before I can get any freedom back. Time was truly not my friend during those months. After it was over, I remember driving home after picking up my car that had been stationary for nine months. I was completely present in the moment, beaming while I drove the 30 minutes back to town. Now, I plan to go to the University of Southern Maine and take their American Sign Language/English Interpreting program, to eventually become an ASL interpreter for the deaf community. This money would help support a four year education journey to help a community with a disability as someone who knows what it is like to have a one. Through the mourning of a life I convinced myself I could actually have, I look back and am proud of myself for getting through that. That old saying is true, “you never realize what you have until you lose it.” I’ll never forget that. As my parents have said, I am persistent, and not even a brain tumor will stop me. Although neurological ailments have stricken the best of people, we often work harder to achieve what we want. These conditions are not kind, in fact they are thieves of many things, but they are one hell of a teacher, and I do not intend to dwell on what I lost. I would rather honor it, and instead continue to use what I’ve learned to flourish.

I had to grieve a life I might never have, at too young an age. I had to accept a future I didn’t even know could happen. A piece of living with epilepsy and surviving a pediatric brain tumor not many folks speak on, is the grief. A grief of what you lost, and a grief of a life you know might never happen. Every case is different, every story is unique, but there is always something you lose to your diagnosis. My epilepsy happened to primarily come from my brain tumor found at the age of nine. A dysembrioplastic neuroepithelial tumor (DNET). A name that just rolls off the tongue. My journey is a long and complicated one, with both powerful wins and heavy losses through the years. I lost many freedoms, such as anything to do with speed, heights, water, and the privacy of being alone, all in the fear I would have a tonic clonic seizure and injure myself and or someone else. After testing, medication, many breakthrough seizures, and a sub resection surgery of the tumor later, I am safely on medication that grants me my freedoms back. I can drive, work, travel, and live on my own, none of which I take for granted. One day during my first semester of college in 2023, my neurologist presented the opportunity of attempting to go off my seizure medication. At this point in my life I was around six years seizure free, basking in college life, studying, making friends, and attending events. At first I said no, I didn’t want to give anything up for a “maybe this will work”. I danced with the decision for weeks, and I realized that the chances I would relapse were slim, so I decided to go through with the process. I surrendered my freedom of driving, working a job, and of course heights, speed, and water. I was eager to be off of the medication. A six month process started and ended at five and a half months. One night while I was visiting home I had a tonic clonic seizure in my sleep. I woke up and immediately felt the physical aftermath, I was utterly devastated. There was so much time and effort in weaning off meds that disappeared in two minutes. My body was subjected to a major trauma physically and mentally. I felt that wave of grief pouring into my spirit. The following went as expected, ER visit, get back on meds, and three more months seizure free before I can get any freedom back. Time was truly not my friend during those months. After it was over, I remember driving home after picking up my car that had been stationary for nine months. I was completely present in the moment, beaming while I drove the 30 minutes back to town. Through the mourning of a life I convinced myself I could actually have, I look back and am proud of myself for getting through that. That old saying is true, “you never realize what you have until you lose it.” I’ll never forget that. As my parents have said, I am persistent, and not even a brain tumor will stop me. Although neurological ailments have stricken the best of people, we often work harder to achieve what we want. These conditions are not kind, in fact they are thieves of many things, but they are one hell of a teacher, and I do not intend to dwell on what I lost. I would rather honor it, and instead continue to use what I’ve learned to flourish.