Living with trigeminal neuralgia has been one of the biggest hardships for me in my life, while also granting me blessings. Trigeminal neuralgia, the most painful condition known to man, is near impossible for any average person to endure, but is even more difficult for a young, busy college student. This condition has affected all aspects of my life, including my education and social life.
At the ripe age of 15, I was not quite diagnosed with the rare bilateral trigeminal neuralgia, but I was living with it. This was the summer after my freshman year of high school. I only attended school 2-3 days a week, and was not able to attend my junior or senior prom (in addition to most social events). I did not know if I would be able to survive college on my own two hours away from home. I learned quickly once I moved away that it would have to be possible. I was in the gifted academic program since first grade, and always have been a very type A perfectionist kind of person. I went into my freshman year of college with the intent to get straight A’s. I learned quickly that would not be possible, as I relapsed after my first two big brain surgeries. I missed class more than I would like, and had to admit to my college professors my struggles with this horrible disease. Thankfully, my professors more than understood and worked with me to make up any assignments and tests that I missed.
My first year of college was rough. Making all new friends was one struggle, but having to ask those brand new friends for rides to the emergency room on multiple occasions was an even bigger struggle. It is not that my friends did not understand. It was that I was so embarrassed for them to see me while in a pain attack. I had so much shame to even ask them. I would sit in my dorm room in pain for hours before I finally would break down and text one of them asking if they minded driving me to the ER. It was so mortifying for me to have to show my friends my greatest weakness. I, however, learned that my friends would take care of me. Even though they only knew me for a couple months, they would check up on me and care about me more than I even imagined.
I am now entering my second semester as a junior in college. I am studying biology (pre-med), with high hopes of going to medical school and becoming a neurologist. I still do not get straight A’s like I always dreamed of, but I consider my GPA to be great considering all I have been through. I got another two big brain surgeries in the summer before my sophomore year and I really thought trigeminal neuralgia was in the past for me.
However, I relapsed again spring of my junior year. That semester was one of the roughest for me – health-wise. I had to go to the ER 6 times that semester. If you can imagine, that takes a big toll on my social life and my education. I did not have the energy to socialize with my friends. I started, once again, going to bed hours before my friends did. I missed class so much that semester. I struggled as I went back onto my heavily sedative, cognitive affecting medicines. I couldn’t remember my own name some days, let alone figure out an organic chemistry synthesis reaction. Somehow, my life figured itself out. I got an A in organic chemistry, I remained a member of some clubs, I lived on campus, I made some new friends. No matter how much I struggle, I always figure something out. I always get the job done.
I have learned so much from the many challenges I have faced the past 3 years as a college student. I think I have learned most about how to get things done academically. I have a list in my phone to remind myself why I am thankful for trigeminal neuralgia. This list helps me get through really bad days sometimes. The number one thing on that list says, “I can tackle a days work even better now because I never know if tomorrow is guaranteed.” Trigeminal neuralgia is not a life threatening disease, although I have days in which I wish it was, but each day I go to sleep not knowing whether I will be able to function at all the next morning. Will I spend the day in the hospital, sedated on pain medicines, crying my eyes out tomorrow? Who knows!
Another thing I have learned from my challenges is how stubborn I really am. The reason I have been able to keep up my GPA is because in my mind, there is no other option. I just will not allow myself to slack off. If I spend a few days unable to function, the next week I spend hours catching myself up. I am so stubborn that I do not want to fall behind my peers. I do not want to show that I am weak. I want to be as “normal” as I possibly can.
Something that I would tell another trigeminal neuralgia warrior is to not give up. Pain, although it does not seem so at times, is temporary. There is always a good day to look forward to in the future. If you want to accomplish something, set your mind to it and prove everyone wrong. Prove all the doubters that you can do anything! Thankfully, because of support groups, I have been able to talk to older trigeminal neuralgia patients who have given me some of this great advice. I look at the younger generation of patients and spread the word that anything is possible! We are still waiting for a cure, hopefully in the near future, and once we are cured of this terrible disease, we will be victorious in all of our life endeavors. We can even be victorious without a cure, because this suffering has made us trigeminal neuralgia patients strong.
We are fighters.