Chair, Young Patients Committee
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, Rosa Sophia Godshall and Sidney Haak!
This scholarship is made available through donations and the generosity of people like you.
Five Strategies for Coping Advice to Young Patients Entering College
By Rosa Sophia Godshall
2022 Facial Pain Resiliency Academic Scholarship Recipient
Twice a week, I make the three-hour commute to Florida International University in Miami where I’m studying for my MFA in Creative Writing. Sometimes I miss class because of pain attacks, but my professors are very understanding.
Whenever I meet a new instructor, I let them know I have trigeminal neuralgia. I tell them how I manage it, what my triggers are, and I let them know the attacks are unpredictable. These conversations have opened doors, too. It turned out one of my professors also had trigeminal neuralgia, and we were able to connect as patients who understood each other.
That’s my first piece of advice for young patients entering college: Be clear about your limitations, not just with others, but with yourself, as well. And make sure you have everything you need to ensure you can be as comfortable as possible during and beyond your studies.
I grew up in a small town in rural Pennsylvania. Ever since I was a child, I’ve had trigeminal neuralgia, but I wasn’t diagnosed until I was twenty-seven.
As I got older, the frequency and length of my pain attacks worsened. I already knew the pattern, but the pattern was changing. As a child, I could expect to be “sick” about once a year. No one suspected nerve pain. In high school, pain attacks were frequent enough that I missed classes.
Teachers hypothesized that I wasn’t trying hard enough—that the pain was my imagination, sparked by an unwillingness to do my work. My mother didn’t know who to listen to, feeling more and more powerless each day. I didn’t know how to deal with it because I could barely describe my own experiences.
Time dragged on during the attacks, which seemed like they’d never end. I couldn’t describe the hell I was in, and to this day have difficulty expressing it in writing.
One of the reasons I moved to Florida at age twenty-four is because of the pain—although, at the time, I didn’t know what it was. I just thought the warmer climate would help me with whatever I was going through, and it turned out I was right.
At twenty-five, I enrolled in automotive school, missing a few classes here and there because of pain attacks I couldn’t explain. I took night classes to earn my Associate’s Degree in Automotive Technology, while working at a library during the day. The pain worsened, becoming more frequent. I graduated from Lincoln College of Technology in 2012, content to have obtained my degree program without missing much. In the summer of 2013, when I was twenty-seven, the pain attacks hit a new level. It was the worst I’d ever experienced. I had been working in an
automotive shop part-time, and the sounds and vibrations from air tools began to aggravate my nerves. I went to the ER for the first time, but they couldn’t figure out what was wrong with me. For three months, I couldn’t eat, I lost weight, and I missed a lot of work.
Finally, I was diagnosed with trigeminal neuralgia.
I remember sitting on the edge of my bed and crying, wondering if I could ever live like other people. I left my job at the library and built my own business as an editorial freelancer so I could attempt to control my environment in order to lessen the frequency of the attacks. I earned my Bachelor’s Degree in Communications by studying online.
Today, I’m thirty-five and in my fourth year at FIU. Although it’s a two-year program, it’s taking me longer because I cannot manage a full course load: As a trigeminal neuralgia patient, I have to consciously manage my nerve pain.
My second piece of advice to young patients is to try to find ways to adjust your life accordingly: Don’t rush yourself. Depending on your focus of study, and your career path, it might be more difficult for you. But, additionally, in an age in which more people are working and attending school from home, you may find more options opening up than ever before.
As I continued to hone my skills as a freelance writer, I was hired as a part-time managing editor for Mobile Electronics magazine. I work entirely from home. In fact, my company is based in Massachusetts, and I’m the only employee living in another state.
Having to structure my life around trigeminal neuralgia impacts my ability to grow professionally: Last year, I made $18,000. I rely entirely on financial aid to attend FIU. To make matters more complicated, I support my 73-year-old mother, who lives with me.
My third piece of advice for young patients is to pursue as much grant money as you can while attending college. Be creative when you look for opportunities.
Here’s how I manage my pain when I go out: I wear soft, two-piece turbans that help mitigate the pins and-needles sensations I have on my scalp, which may also be the result of undiagnosed occipital neuralgia.
I wear cotton head scarves to protect the left side of my face from any breezes. In air conditioning, I use my scarves to keep my face warm.
I think most of us reach a point where we don’t worry about what other people think anymore. When I’m asked about my head scarves, it’s an opportunity for me to raise awareness of invisible chronic illnesses.
Sometimes I worry about what might happen if I lost my job—how I would take care of myself and my mother—or what might happen if my pain became more challenging. But I can’t worry too much about that. All I can do is put one foot in front of the other and work with what’s in front of me.
My fourth piece of advice to young patients is to share your experience: You don’t have to do this alone. People likely won’t understand your situation, but if they know you suffer from chronic pain, they’ll understand when you have to leave early, or opt out of after-class activities.
My hope is to pursue a PhD in Creative Writing after I graduate with an MFA. At an informational session on PhD programs held by one of my professors, I raised my hand and said, “Because of my chronic pain, I can’t hold a regular job, and I don’t think I would be able to teach because of all the triggers. Is it okay to go for a PhD if I just want one?”
My professor replied with an emphatic yes, adding, “That’s the best reason!”
My pain has changed the way I look at life: Without the pain, I might be planning my career. With the pain, I’m aware it could get worse, and this causes me to focus more on things that I enjoy. Instead of focusing on a career, I focus on what I love to do: Writing is what I love to do, and I also love being a student.
In this way, pain has taught me to cherish what matters most. It’s given me an intimate relationship with my own mortality: If my low-pain days are numbered, I’d better do what I enjoy so I can make the most of my time. It’s my belief that this kind of living—with or without chronic pain—leads to a life of few regrets.
My fifth and final piece of advice: Follow the path you most desire for yourself. As I’ve heard other patients put it, I have chronic pain—
But chronic pain doesn’t have me.
My Trigeminal Neuralgia Journey
By Sidney Haak
2022 Facial Pain Resiliency Academic Scholarship Recipient
My trigeminal neuralgia journey began when I was a sophomore in high school. I was a varsity cheerleader, played trumpet in the marching and concert bands, and was involved in numerous clubs. I had just moved to Denver, Colorado to live with my father and everything was looking up! Without any warning, I was hit with the brick wall of debilitating pain that would control the rest of my life.
I don’t remember the day that it began, but I do remember thinking about how much I was dreading going to the dentist for the constant pain that I felt in my tooth. I always avoided going to the dentist, but the pain was too consistent and began to get worse and worse. I do remember finally telling my father that I desperately needed to go, and soon after made my appointment. I went to my appointment, had a few cavities that needed to be addressed, and naively thought that would be the end of my discomfort. After having my dental work done, I patiently waited… and waited… and waited for the pain to subside. After going back multiple times, I switched dentists to try and find a second opinion to help me. I am forever grateful for this dentist who suggested that I set up an appointment to be seen by a neurologist. I do recall him saying that the tooth was the definition of perfect and that I should not have any pain at all. I was the least likely candidate for a diagnosis of trigeminal neuralgia, but I am grateful that he went with his gut and was able to help me find an answer to my unending pain.
I spent many hours in my car, either from pain or frustration, of being passed around to different dentists and neurologists when all I cracked was an answer. I was a senior at this point when I finally got a name to what was causing me so much hurt, both physically and mentally. I was so confused as to why something like this would happen to me, what I did to cause something like this to happen, and what I was supposed to do now that I knew that I would have to cope with this the rest of my life. I spent countless nights woken up from the pain, rolling in a ball in my bed, seething and crying from what felt like someone pulling teeth out of my head. I was embarrassed to be in public because it would hit me like a light switch; I would be completely fine one second, and then unable to stand straight and breathe the next. I was so worried about what other people, especially being in high school, would think of me.
The first attempt to control my new “friend” was medication. This sounded simple enough and I happily took my new medication religiously in order to have some relief. To my dismay, I only experienced the most popular side effects: dizziness, memory loss, sleepiness, etc. I recall having to pull over on my way to work one day to call my mother because I had forgotten how to get there, or the time that I had the strange sensation of turning my head and then feeling like my eyes took a minute to catch up.
I was a senior in high school and began to watch my GPA drop before my eyes. I lost my ability to drive myself to work and school, and slowly started to distance myself from my extracurricular activities. I lost my independence and drive to finish strong, go to college, and plan for my future. I was so desperate to get my life back that in May of 2013 I decided that I would have microvascular decompression done. I do remember everything about the day that I had my surgery and how scared I was going into the operating room. I remember the many appointments that I had prior to prepare me and even the morning of when they came in to mark the right side of my head and insert the IV. I remember slowly getting drowsy and being wheeled into the operating room, the fluorescent lights buzzing and fading as I passed by. I remember helping the doctors move me from the rolling bed onto the operating table, unable to control my movements or thoughts. Then nothing.
I woke up and I am not confident on all of the details, but I know at some point my neurologist came in to check on me. The one question I wanted to know was “were you able to fix it?” He told me that he was unable to because he learned that I have a small bone growth on my skull that would otherwise never have been detected or impacted my life in any way. I was just so “lucky” that this bone growth is what was rubbing on my trigeminal nerve, along with my brain stem and my optic nerve. This growth has caused black vision spells my whole life and my facial pain, and I finally knew why. They were unable to shave it away because I would likely experience blindness or some form of paralysis if anything went wrong during the operation.
So there I was, back at square one… and with a cool new scar. I decided that regardless of this new information, I was going to apply to my dream school as I was quickly approaching a huge milestone in my life, the time when I moved away to go to college. I applied to Texas A&M University because I wanted to be a veterinarian. I enrolled in courses, packed up my life, and moved into my first dorm! I loved being at school and made the best of friends. But, unfortunately, I was still taking a cocktail of medications each day that had a clear negative impact on my GPA. I was self conscious and embarrassed to be at my dream school and have such a low success rate in my courses. I quickly realized that I needed to take the time that everyone suggested, go back home, and give myself time to heal. One semester later, I gave up on my dreams of attending Texas A&M, gave up on my dreams of being a veterinarian, and moved back home. I had tried so hard to do well. I never went to a single party, always worked on school work instead of hanging out with friends, and stayed up much later than I should have been preparing for
tests. I thought I was doing it all right.
After moving back home, I enrolled in our local community college. I continued with my classes in my
new major of education. I immediately saw my GPA shoot up! I knew that if I slowed down and listened to my body that I could do it. I slowly weaned myself off of all of my medications and continued to watch my academic success rise. I made new friends, began to be able to work again, and I had the feeling that I was getting my life back! After a few years, I was able to graduate from college with my degree and certification in teaching! I began teaching in 2018 and am teaching high school English to this day! I am now a wife, a mother, a homeowner, and an independent person who also lives with trigeminal neuralgia.
If I could tell a young patient who has just been diagnosed with trigeminal neuralgia one thing, it would be that you are not a statistic. You are part of a bigger picture. When you have no answers for what you are going through, just remember all of the people before you who could not live with this pain. You have to do it for them, and for yourself. You are never alone, even when it feels like no one else in the world will understand. I would tell them that every ounce of pain and anguish that they feel is valid. But that it is a season. Each attack of pain will fade and it may come back again, but that one will fade too. Find your tribe of people who will be there for you and support you when you are too tired to hold your head up. Lean on those who have paved the road before you. It is okay to admit that you are hurting, tired, upset, angry, lost. But, never give up. You may have the answer to help those who come after us. You may have the answer for one person who needs it most.