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, Taylor Maynard and Kaitlyn Ready!
This scholarship is made available through donations and the generosity of people like you.
The next cycle of scholarship applications is now open! Click here to apply.
I used to think that being diagnosed and living with trigeminal neuralgia (TN) would be the most difficult thing I would have to cope with during my entire life, but that at the very least, it would shape me into an even stronger and more resilient individual. I was wrong about the first part, and thankfully the latter was correct. It had to be because, since my TN diagnosis in 2020, I have repeatedly faced personal challenges and losses that have shaken me more than TN ever could.
Since I was a teenager, I knew I wanted to be a psychologist so I could “help other people.” That reasoning expanded greatly as I matured, learned more about the field, and lost my father to Alzheimer’s and vascular dementia during my senior year of high school. Early on during college, I completed a biopsychology course that further inspired me to study neurocognitive aspects of brain-behavior relationships, eventually leading to my unyielding desire to become a licensed, clinical neuropsychologist.
It’s been five and a half years since I graduated college. Since then, I have worked in both clinical and research settings, seeing patients living with disorders ranging from Autism to Alzheimer’s, and publishing several research studies in peer-reviewed journals. It was during that time, however, that I was also diagnosed with TN type 1. My diagnosis came during the beginning of the pandemic when the whole world was confused about its future and safety. I’ll never forget those initial, debilitating electrical zaps of pain in the left side of my mouth and face when I would bend over, walk outside in the cold winter wind, and eventually when I would attempt to eat, speak—and, on my worst days, simply sit up in bed. Or the numerous emergency trips to the dentist and then the endodontist for a root canal consultation. Without that consultation, however, perhaps it would have taken much longer to find a doctor who would listen to my concerns about a possible neurological disorder. I remain endlessly grateful to that endodontist for confirming that indeed, I was suffering from nerve pain and that I should see a specialist immediately. Thanks to him, my TN type 1 was confirmed via MRI, and I have since found a medication that is mostly effective and allows me fairly long periods of remission, briefer periods of severe flares, and overall better quality of life. Despite this, coming to terms with the strong possibility that my condition would progressively worsen as I got older made me realize how life-changing this diagnosis really was. It made me second-guess my ability to pursue higher education and a career in such a challenging field of science and patient care. How would I be able to provide excellent patient care if/when the monster that is TN returns with a vengeance (because I knew it would)? It was one of the most challenging questions I had asked myself in a long time. It wasn’t long before I realized that I would not let TN define me or my career goals and dreams, so I pressed on, continuing to shine in my job as a research assistant, despite other challenges that cropped up later that year, such as losing my housing in the middle of the pandemic and having to find a new place to live within 30 days.
While I never thought anything would trump the challenges posed by TN and 2020, nothing could have prepared me for 2021. In March, a few days after not being admitted (just barely) into a doctoral program in Philadelphia, my stepdad had a knock on his door from the police while he and I were talking on the phone. When he called me back, he told me my brother, Kyle, was dead. At the time, my mother, stepdad, and I were all in different states, so it was even worse that we couldn’t all be together in that moment. The shock and numbness of this experience was more painful than any TN flare and, looking back, I remember thinking about how my TN diagnosis likely made me stronger during these periods of adversity. After Kyle died, I often flashed back to those uncertain days when I didn’t know what was causing my TN (e.g., a tumor, multiple sclerosis) and how caring and concerned he was. Kyle was furloughed from his job at the time and was stuck in his apartment alone in New York, so he would often FaceTime me in tears due to loneliness and concern over what was “wrong with my brain.” It was the first time in a long time that he had shown so much love for me, and it meant so much.
As time went on after Kyle’s passing, I persevered with the support of friends and family, continuing to work in research and see patients, with the goal of applying to doctoral programs just one more time, for admission in Fall 2022. I knew that’s what my brother would have wanted, and I knew my successes and happiness would be integral for my mother to heal.
Despite my hard work, grit, and persistence, I have now been denied admission to doctoral programs in clinical psychology three times. For some context, clinical psychology doctoral programs are some of the most (if not the most) competitive graduate programs to gain admission to, due to their extremely low student funding for research and stipends but their high number of outstanding applicants. But that doesn’t make it sting any less each time I make it on a waitlist after going through such a rigorous application and interview process and am ultimately denied admission. Thus, when it came time to apply for a third time the fall after Kyle died, I thought it would be wise to apply to a few master’s programs, just in case. Even the master’s programs I was applying to were competitive, and I wasn’t confident that the researchers I was hoping to work with would accept me after looking at other top-notch applicants. You can imagine my utter shock, after another close-but-unsuccessful doctoral application cycle, when Northwestern University Feinberg School of Medicine’s Clinical Psychology MA Program accepted me to work on research in the Mesulam Center for Cognitive Neurology and Alzheimer’s disease. It felt as if my dreams were finally coming true. This program could be my final and next best shot at gaining admission into a doctoral program in the future—and I would be able to gain even more research skills while working with some of the pioneers of dementia and neuropsychological research.
The program only allowed me a short month and a half to find a place to live, pack up my things, and move to Chicago, IL from Providence, RI. It was no small feat and an enormous transition; however, with the help of my parents and boyfriend, we were able to get it all done just in time for the program to start. But with every step forward, it seems, comes a step backward. Within 3 weeks of moving away, my mother called with an update about some ongoing stomach issues she had been dealing with for the last 6 months. She finally ended up going to the ER due to the pain and was referred to Boston for further testing. She was diagnosed with cancer—pancreatic cancer, stage 3, borderline resectable. I was at a loss for words once I fully came to understand the severity of this type of cancer, and the rigorous course of chemotherapy my mother would have to undergo over the next 6 months.
Again, I frequently flash to my own diagnosis of TN, how significant that was and still is for me, and wondering whether it will return as a full flare. I often experience mild flares, especially lately, from clenching my jaw and grinding my teeth at night due to ongoing stress. Though TN is a treacherous diagnosis that I would not wish upon anyone, I can’t help but think that it has shaped me into the resilient woman I am today. Being diagnosed and coping with TN kind of makes you feel like you can handle anything—whether it’s applying to graduate school repeatedly, dealing with grief and loss, and even coping with a parent’s cancer diagnosis. While this feeling isn’t always static, it is persistent enough to make you feel like a true warrior on most days, and that’s all we can really ask for, right? We all just want the strength to get up in the morning, fight, make the right decisions, and hopefully make someone else’s day easier or brighter.
My TN diagnosis has taught me so much, throughout periods of both remission and flares, celebration, and loss. Mostly, TN has given me the gift of resiliency and strength in the face of adversity, and for that I am truly thankful as I continue to pursue my career in clinical neuropsychology. For other young patients living with TN or other chronic pain conditions, my advice is this: never doubt your strength. We often don’t realize just how strong we are until we are faced with challenges beyond our control. It’s also important to remember that we are strong on both our best days and our worst days, rain or shine, on the couch or out in the community.
Thank you for listening to my story and considering me for this scholarship. If anything, please know how appreciative I am for everything that the Young Patients Committee and Facial Pain Association (FPA) do for the facial pain community. I am eager to see how research advances the treatments and surgical interventions for TN as time goes on, and I will never stop fundraising and donating to the FPA. I hope to one day volunteer as my personal life settles down a bit. Thank you for all that you do!
I love sharks. This may seem like an odd “fun fact” regarding facial pain, but it relates to my story in a big way. I’ve loved sharks and marine life for as long as I can remember, and as I got older, my fascination grew. When applying for colleges, I looked at schools intending to go into shark behavior research. However, on one of my college visits, that dream changed.
I decided to get SCUBA certified while I was in Florida looking at colleges. While on my final dive for SCUBA certification, my inner ear ruptured with what is called a perilymph fistula when I was only 7 feet underwater. This caused the fluid that is part of the inner ear to leak out, resulting in a loss of spatial orientation and awareness. I felt like I was sinking, and my only thought was “I hope someone comes to save me.”
In reality, I wasn’t sinking but was floating to the surface, where my dive instructor guided me to safety. I don’t remember much of what happened next, but the event left me unable to walk or even sit up on my own. I required emergency surgery to repair the damage. Afterward, my doctors told me that scuba diving, or working underwater in any capacity, would not be in my future. I was shattered. Everything I had ever wanted for my future was taken from me at that moment.
The next few months were not easy. Not only was I struggling mentally with what I wanted to do in the future, but I was undergoing intense physical therapy as I worked to regain control of my legs. My doctors weren’t sure if I would walk again, but my physical therapist and family encouraged me to keep fighting. After several months of hard work, I took my first steps without a walker. Without them, I wouldn’t be walking today.
After undergoing a second surgery and recovery, I decided to attend Purdue University in the fall of 2019. I was so excited to leave all my injuries behind me and start a new life as a student. The school year began, and I dove headfirst into every opportunity: attending every club call-out and student event I could fit into my schedule, meeting new people, studying until 2am every weeknight, and having movie nights with friends on weekends.
Some may say I was trying to “drink from a firehose.” But, as a newly “healthy” 18-year-old, what could go wrong?
Unfortunately, life had other plans for me. Two months into my first semester, I sat in a friend’s dorm room frantically preparing for my second round of exams. I went into her dorm feeling a little dizzy, which wasn’t uncommon for me late at night. But when I went to leave, I could not stand or walk home on my own. I had worked myself too hard, and the “patch” that was put on my inner ear during the second surgery had torn away. I was right back where I started.
After consulting with my doctors, I made the decision to try one more surgery. This time it would be more invasive and riskier than before. The surgeons would extract muscle from my jaw
, and use this tissue to create a stronger patch to repair the damage. It was after this surgery that my facial pain started.
I woke up from surgery with a pounding headache and a pain in my face that would soon be my “new normal.” After several long months of pain and confusion, I was diagnosed with trigeminal and occipital neuralgia at the Mayo Clinic. The diagnosis wasn’t a shock, but medical confirmation that I would now have a life-long illness was difficult to wrap my head around. To make it more difficult, I had to return to college just one week later.
The challenge of managing my pain at school was expected. What I didn’t expect was the overwhelming feeling of loneliness, even when surrounded by my closest friends.
They all knew I was recovering from surgery and going to doctor’s appointments for months. They knew I had received a diagnosis for my nerve pain. But, as many people with facial pain can attest, no one truly understood. A simple statement of “my face hurts” doesn’t convey pain at this level. Worse, going into detail about the intensity and severity of my chronic illness made me feel helpless. Chronic facial pain was a constant reminder of how different I was.
One moment of loneliness stands out: I was in my Intro to Kinesiology course talking about nerve disorders. I sat through the entire lecture, until, near the end, the professor brought up a slide on Trigeminal Neuralgia. The professor gave some basic facts, then had us watch a short video following several older TN patients. They were completely debilitated by the pain.
I saw videos similar to this after I received my diagnosis. They all followed the same story: an elderly person gets TN from an obscure facial injury; the pain is so debilitating they can’t leave the house; and no treatment seems to work.
It was always a sad story, but never one I could relate to. None of the videos ever showed someone my age, going to college, while still dealing with the stress and pain that comes with a chronic illness like TN.
When the video ended, the professor asked the class, “Do you know anyone with TN?” Myself and two other students raised our hands. The professor asked who we knew that had it. The other students’ answers were “my great aunt” and “an older cousin.”
Then the professor pointed to me.
“I have it,” I confidently answered.
She looked puzzled, like she had misheard me.
She asked again, “No, who do YOU know that has trigeminal neuralgia?”
I paused, before again saying “It’s me. I have Trigeminal Neuralgia.”
There was an awkward silence in the room. The professor looked away and moved on with class announcements.
I was left frustrated and confused. Why wouldn’t my professor listen to my story? I thought to myself, “Maybe this is something I should be ashamed of after all.”
That day added to my feeling of loneliness on campus. I avoided bringing TN up in conversation, even with my closest friends. I did worse in my classes, but I was too ashamed to ask for help. I failed my very first biology exam that semester because I was having a flare-up during the test but didn’t tell anyone.
I told my mom that I just wished someone my age could understand. I felt alone in my pain, which only worsened my depression and anxiety.
One day, my mom called and told me she had found something that might be helpful for me. She sent me a link to the Young Patients Committee Instagram page. I was so surprised to see people my own age sharing their stories about facial pain. It was the first time since I woke up from surgery that I felt somewhat understood, even though I was just scrolling through an Instagram account, laughing at the memes.
I immediately signed up for the next support group meeting the following week.
In that support group meeting, I was encouraged to reach out to my campus’ Disability Resource Center to make them aware of my condition and discuss options. I did, and they helped me get more time on exams, reached out to my professors for help, connected me with a therapist to talk about my mental health, and so much more. I even reached out to my biology professor and explained the one “F” I received on that first test. After a quick conversation about my facial pain, she allowed me to retake the exam. I did and received an A in the class.
Just one meeting with the Young Patients Committee completely turned my life around. It wasn’t easy, but I slowly started to open up to my friends and talk about my facial pain. I attended virtual seminars through the Young Patients Committee to learn more about facial pain, and I now encourage my friends to sit in with me. Once I started opening up to the people around me, I felt much less alone. Even though none of them could directly relate, they could educate themselves about Trigeminal Neuralgia and better understand me as a whole.
I am forever thankful for the Young Patients Committee. Trigeminal Neuralgia doesn’t have to be something I am ashamed of – it can be an important part of what makes me unique. I should never feel scared to share that part of me because I know I am not alone in this. I have learned that asking for help doesn’t make me weak; it is a sign of strength and perseverance.
Showing that strength may mean getting involved with the Disability Resource Center; it may mean opening up to professors and explaining how facial pain affects my day-to-day studying; or it may simply mean sharing a funny meme from the Young Patients page with a friend who will understand me a little bit more. The Young Patients Committee has given me the courage and perseverance to do all three.