The Young Patients Committee (YPC) assists in fulfilling the mission of FPA by representing the interests of neuropathic facial pain patients under the age of 40. In 2021, YPC launched the Facial Pain Resiliency Academic Scholarship, available to students in the US between the ages of 18-40 attending college or university that have facial pain. Students who struggle with, or succeed in their fight against facial pain deserve assistance in their pursuit of a post-secondary education. Ambitious students who attend college despite their facial pain setbacks display impressive resolve, and the Young Patients Committee of the Facial Pain Association wants to recognize and reward these determined individuals. The FPA YPC is pleased to announce two recipients who each received a $500 scholarship.
Congratulations, Adrienne Burg and Jennifer Hoeksema!
This scholarship is made available through donations and the generosity of people like you.
Read Adrienne’s winning essay below:
Leaving one’s college campus abruptly when the COVID-19 pandemic hit was tough for every student. But for classical musicians like me, studying to become professionals, there was an extra kind of loss. Overnight, we were disconnected from some of the most valuable parts of our music education — not just the variety of necessary performance experiences, but also the treasured community of like-minded and talented musicians.
Devastated, I struggled to process the situation that had turned my freshman year at Oberlin Conservatory upside down. While packing up my entire life in Ohio to move back home to California, I could not help but think: “This is probably the worst thing that could happen during my time in college.” Unfortunately, I could not have been more wrong.
When I was presented with an opportunity to return to school less than six months after leaving, I was one of many who decided it was still not worth the health risks to return. I had just finished my freshman year of college in my childhood bedroom, hundreds of miles from school, and I realized that I needed to find a different approach to succeed in the upcoming fall semester for my mental health. This led me to a small studio apartment not far from my hometown offered by a generous family friend. I was so excited and grateful to have found a way to be in school remotely, without being stuck in that bedroom. I had exactly the independence and autonomy that I imagined in that little apartment. My fall semester of 2020 proved to be one of my most memorable college experiences, in both the very best and very worst ways.
One morning in November 2020, I woke up with a blinding and burning pain in my right cheek. As I mentioned earlier, I am a musician. I play the oboe, a wind instrument played with a vibrating reed as a mouthpiece. I have now been playing for over a decade and decided to pursue a degree in music, so it is safe to say that music is a large part of my life. The day I woke up with pain in my cheek — constantly coming and going, the smallest touch aggravating it — I went to practice my instrument as I do every day. The moment I began to play, it felt as though a lightning bolt had erupted through my face from my eyebrow down to where my reed rested on my lip. And so began my seven-month hiatus from playing the oboe, the most terrifying period of my life to date.
From then on, there were more infuriating obstacles than I could count, most of which were made worse by my pain threshold constantly being maxed out. Aside from the physical pain, the psychological distress was the most difficult for me to cope with. Music is not just a career; it is a form of profoundly emotional communication deeply embedded within me. Being torn apart from my instrument took away an irreplaceable form of self-expression. Even worse than that was the feeling of not knowing when — or even if — I would play again. But I also felt like time was ticking. College was and still is the most important time for me to acquire the skills I need to survive in the world of music. One such skill was learning to listen to my body. As a musician, this is already an important part of life, but I was given a new perspective on it when unable to play for those seven months. Taking care of myself meant respecting when my pain was too high to complete an assignment on time, and I learned to draft and save emails to professors for such flare-ups. This practice in self-care became integral to the later part of my journey through music school.
I have always been driven so I usually persevere until I find a solution. Being thrown into the medical system with those personality traits was quite unnerving, but those qualities soon became my best weapon. I must note that I am very fortunate to have had excellent health insurance, because I was young enough to remain on my parents’ plan. Regardless, I learned very quickly that the scheduling systems, appointment availability, or pharmacy wait-times did not care how I felt that day. If I needed to see a specific doctor and was able to get an appointment, I needed to show up. At the end of the day, it was my innate stubbornness and a little extra perseverance to find answers that made the difference. Making and attending doctor’s appointments and calling pharmacies and health insurance became the most important parts of my day, regardless of college classes.
In retrospect, I should have taken at least a semester off school, but I was terrified — I had no idea when I would play oboe again, and I knew I would have an exceedingly difficult time going back to school if I was not able to play. That stubbornness sat on my shoulder, whispering in my ear, “No, you can and must do it all!” So, classes became low on my priority list for quite a few months. I do not recommend choosing to stay in school if you can take a medical leave of absence — but for me at that time, staying in school is what kept me driven toward finding an effective treatment.
All the events took place during my first two years of my Bachelor of Music degree and altered my trajectory significantly. I missed vital months of learning during my sophomore year and spent the following months re-learning and refining skills I had previously mastered. It was disheartening, but it was also the most meaningful work I have done in my musical career. The feeling of my body allowing me to play the oboe again, after months of trial-and-error culminating in successful surgery, was the most pure and beautiful joy I have experienced.
While experimenting with different medicines and treatment regimens for pain control, I dealt with a very frustrating side effect- difficulty finding words. Being a college student expected to write papers, respond to discussion posts, and contribute to classes verbally regularly became scary when I started to struggle finding words mid-sentence. It was very demoralizing and incited quite a bit of self-consciousness about speaking aloud in classes, where I could not use a thesaurus to help me locate the lost word — especially in a Zoom class.
Innumerable daily phone calls with my best friend Stephanie during the heart of the pandemic were a partial remedy to this issue; because we talked so frequently and had done so for so long, she was gaining the ability to fill in the blanks of my sentences for me. It was not a perfect solution, and often her interjection would be a very close synonym for the word I was looking for, but it was such a relief to feel that I was understood. When we discovered this, we were both elated! We began living together for our junior and senior years of college, and she got so proficient at finding my missing words that it became a normal part of daily life for her to interject into my sentences. Taking a class together spring semester junior year provided me with a little security blanket, and from there my public speaking self-confidence slowly began to return.
I am incredibly glad to be where I am now, at Rice University in Houston studying for my Master of Music. I will never know where the other path would have taken me, nor is it worth my time worrying about. I could never have predicted the amount of learning that would happen over my four years of college. I learned that I have so much strength and resilience within me both physically and emotionally. And I learned that so much strength comes from your community, and allowing those around you to help is the best choice to make.
One of the most powerful contributors to my perseverance through school were the friends closest to me, in person and long-distance. Despite being a person who loves personal space and living independently, living with close friends is what kept me going through school. When I had a flare-up, was sick, or needed help finding the right words for a paper due at midnight, my support system was right there. There were endless nights of laughter, chocolate and gossip time, hugs, and so much love. The people who were only a text away were vital as well, because everyone deserves a friend who will always listen to your frustrated outburst, random thought, or excited announcement. I simply would not have made it through college without my beloved roommates and friends, and their presence taught me a lot about asking for and welcoming help from others.
My top tips for living with facial pain in college are: talk to your friends, listen to your body, and utilize all disability accommodations you can get from your school. No matter how many or how close your friends are, talk to them, let them know what you are feeling, and ask for help when you need it. Listening to your body, while important all-around, also requires having strong communication with professors. Make those introductions early, and even without a formal diagnosis warranting official disability accommodations, ask your professor if you can plan for your success together. They want you to succeed, and the easiest way for them to do that is to know what you need early on — before you miss a deadline because of an unexpected flare. Ask a friend to attend a meeting with a professor with you if you are worried about being able to clearly convey what kind of accommodations you need.
You are living every day with facial pain, and while that might make daily tasks seem more daunting than they used to be, you are more prepared for college than you think. You have spent weeks, months, or years with symptoms and have developed coping strategies in return, and the most important parts of surviving college with facial pain — friends, self-care, and using your resources — are also vital to all education experiences.
Most people are rightfully scared of any kind of surgery, let alone brain surgery; and while in college? Preposterous! When I found out I was a candidate for microvascular decompression in May 2021, I bawled happy tears. The tears were streaming down my face before I even realized I was crying. Three weeks later, I walked out of the hospital with a three-inch scar and 80% less pain. I would be playing the oboe again within two months, and while far from recovered, I had made it through one massive steppingstone in my journey and could finally take a step toward the next one. My road through college has been unexpected at every corner, but I would not be who and where I am today without the immense challenges and surprising moments of joy through my ongoing journey with trigeminal neuralgia.
