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, Bennett Decker and Sarah Salvatierra!
This scholarship is made available through donations and the generosity of people like you.
Read Sarah’s winning essay below:
In the summer of 2021, I was 24, brash, and felt that I could bend the world to my whims. I had just survived a year of teaching in New York City at the pandemic’s peak and was about to attend Columbia University, my dream school, to pursue a Master of Social Work on scholarship. I wanted to celebrate with several of my best college friends by road-tripping to Maine, trekking through national parks, and sampling from the numerous breweries across the Pine Tree State. Unfortunately, my plans for summer adventures quickly unraveled halfway through, as my health took a turn for the worse. I came home thinking it would be a momentary lapse, but the Maine trip instead served as an omen for the years ahead.
I began to have ongoing and strange symptoms, which included intense headaches. The headaches soon mutated into a unique sensation of buzzing, burning tenderness at the back of my scalp, finally evolving into a series of horrific, neon-bright shocks that left me gasping and crying with pain. Doctors insisted I was simply anxious as a new graduate student and dealing with migraines or other stress-induced symptoms. These “migraines” were relentless and seemingly completely random, keeping me on edge for the next attack, and I began to show up at the emergency room. more than I could show up for class. I somehow finished my first semester of graduate school, but even after months of pressing the issue with my primary care doctor and neurologist, I was nowhere close to finding out what was happening to my body. Without a diagnosis, I couldn’t see a way to keep fighting for the rest of the graduate program, and so I made the difficult choice to withdraw and focus on my health. I abandoned my gorgeous Brooklyn apartment, said goodbye to my friends, and found myself having lost everything I cared about. I was no longer the same vibrant, confident person and couldn’t do much else except stand still with my pain.
It wasn’t until I did some desperate Googling that I luckily discovered the Facial Pain Association and its support groups in March 2022, when things started to slowly move forward. Through recommendations from support group members, I got connected with doctors who are experienced with facial pain, neuralgias, and migraines. I was diagnosed with bilateral occipital neuralgia, given confirmatory nerve blocks, and prescribed a combination of antiseizure medications, migraine preventatives, and muscle relaxants. Though I considered surgery, I was not a good candidate due to suspected autoimmune issues based on my other symptoms, which led to investigating more avenues with my care team. These continuous efforts to get adequate medical treatment, along with regular attendance at FPA support groups, have made a drastic difference in my quality of life, even if it has not entirely removed my pain.
After two years, I’m now thrilled to be enrolled full-time in U.C. Berkeley’s Master of Social Welfare program to accomplish my dream of becoming a clinical therapist and social worker. Due to my experiences navigating the complexities of the healthcare system and living with occipital neuralgia, I’d like to think I’m no longer as cocky as my younger self. Rather, facial pain has humbled me and given me new insight into how patients with chronic health conditions struggle. I no longer want to bend the world but instead mold my own heart towards the capacity for suffering—I hope to become a therapist who bridges the specialization gap in mental health services for people with chronic conditions and pain (and I would love to one day treat patients with facial pain!). On top of that, my spark has returned, and I seek to become a fierce advocate for my clients, especially those who are part of low-income communities of color, are LGBTQ+, or are experiencing homelessness.
For other young patients affected by facial pain, especially those feeling like they are at the end of their rope, I would like you to know that you are not alone. There is a community out there of people just like you who are willing to listen, share their experiences, and offer resources. While it’s true that facial pain has impacted the trajectory of my life, I’ve remained resilient because of the help of people in the FPA, especially the Young Patients Committee. Joy has gradually found its way back into my life as I carefully rebuild new, steadier foundations with the support of others. I used to be terrified of asking for help, thinking it meant that I was weak, but there is profound strength and bravery in reaching out to people and being honest with your feelings. Additionally, the support group members will guide you in learning how to advocate for yourself in medical settings, which is key to getting the treatment you need. Never be afraid to self-advocate, because you are the only one who can feel what is going on in your body. If you find yourself feeling lost because of facial pain, I highly recommend getting in touch with the Young Patients Committee or your local FPA support group. If not the FPA, find a community where you can be empowered by opening up to a few of your closest friends, family, and loved ones. This pain is not one that anyone should carry alone, and there can be immense healing in connecting with and learning from others.
Most importantly, I want to emphasize that if you lose things because of your experience with facial pain, whether that be professional opportunities, relationships, or even your sense of self, it doesn’t mean that your life is over—no matter how much it may feel like it. It doesn’t mean that you can’t find new opportunities, make meaningful connections with people, or build confidence again. After the havoc that occipital neuralgia wreaked on my life, there were moments when I considered giving up. But I remained curious as to how my life could change if I kept showing up for myself just a little bit every day. I’ve since learned that grief can be part of living with facial pain, and that it’s okay to mourn the losses of things and people that were important to you. As someone in the Orange County FPA chapter once told me, “Own your pain,” including all your grief. I like to think that anyone with facial pain becomes a warrior not by choice but by circumstance, and it is an honor to fight each day. A life with facial pain can still be a life well-lived.
