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 Bennett’s winning essay below:
I learned that I had trigeminal neuralgia during spring break of my junior year of college. At first, we thought the shooting pains and electric shocks along the bottom right part of my jaw were the result of a dental infection, but after spending lots of time in dentists’ offices and taking antibiotics, my primary care physician decided to prescribe carbamazepine, an anti-seizure medicine. The symptoms started to decrease, and we began to understand what exactly was causing my facial pain.
As we came to learn, trigeminal neuralgia (TN) is not a type of chronic pain common to people in my age bracket. It most often occurs in females over the age of 60. This means, primarily, that surgery to attempt to relieve the pain is a more difficult proposition for me, as many of those who undertake the surgery experience a return of at least some symptoms within 10 years. If one is over 60 and has tried medication for a number of years, 10 years might not seem like such a big gamble since it may carry one to the end of one’s life. However, for me, it becomes a substantially different calculation because I can (hopefully) expect to live many years past that.
As such, most of the last five years have made me think about what it will mean to live with this chronic pain for a long, long time, going through waves of it being present, latent, and then present again, in varying degrees of severity. I often feel as though I am walking around with a sword of Damocles hanging over my head: the sword could drop at any minute, and then I will be back in a cycle of managing pain in the way I talk, eat, and brush my teeth again, as I am now, writing this essay.
As an incoming rabbinical student, I think a great deal about how to contextualize my experience of chronic pain within a Jewish context. Judaism plays a central role in my life, and the way I experience the world is always reflected through the lens of Judaism. I think a great deal about an interview with Rabbi Shai Held of Yeshivat Hadar, a Jewish educational institution based in New York City. The interviewer writes that “(His) illness… has affected not only the ways he reads text and writes, but the ways he talks to people.” Rabbi Held goes on to say, “My illness has given me a tremendous spiritual and ethical teaching. The danger, though, is that illness at its worst moments encloses you.”1
This resonates with me on a deep level. My trigeminal neuralgia has, despite, or perhaps because of my pain, offered me new opportunities to reexamine pieces of Jewish text or theology in ways that able-bodied people might not. Where is my tradition speaking to me in a way that it hasn’t spoken to others? Where is it ignoring me? In this way, my trigeminal neuralgia has taught me to understand my religion – its texts, vernacular, culture, and identity – in ways that those without TN, or chronic pain at large, might not. This lens has equipped me with a unique opportunity to examine a particular example of Jewish parlance, its inadequacies in speaking to those with chronic pain, and where Jewish theology and tradition must grow in order to talk to Jews of all bodies and experiences.
When speaking to a person dealing with illness, Jews will often wish them a “refuah shlema,” or in English, “a full healing.” The phrase has its roots in Jewish liturgy, stretching back to prayers from at least the 8th century, with the phrase still used in some of the most important compositions said in synagogues today. Even Jews who do not speak or understand Hebrew know this phrase and wish it to people contending with sickness. It’s a beautiful, compassionate sentiment, invoking Jewish prayer and centuries of our ancestors’ experience of illness to wish another a speedy and complete transition from illness to health.
However, if examined deeply, the phrase can feel discordant for those with chronic pain. We will likely never experience “a full healing.” My facial pain, or the possibility of it, will walk around with me wherever I go, and the paradigm of someone who has an illness and then is cured, or gets better, simply doesn’t fit my experience. The blessing of “refuah shlemah” is, even with the best of intentions, exclusionary to those who have illness and pain that will never be completely healed.
That said, it is meaningful to me when people wish me a “refuah shlemah” upon hearing about a trigeminal neuralgia flare-up. They, like me, are connecting the experience of my pain to the experience of my Judaism, understanding that all the experiences that I have in my life are framed by my Judaism. They are trying to connect with me on a deeper level than a generic “get well soon” by speaking to a shared cultural lexicon that possesses deep meaning for us both. The gesture has no malice – it’s coming from a place of wholehearted compassion.
It is Judaism itself that lacks language and linguistic vernacular to express well-wishes for those contending with pain that will not go away and will not ever be “completely healed.” There is a gap between what people understand and identify as Jewish and what speaks to the experiences of those for whom the best wishes are expressed. While phrases like, “I hope your pain today is lesser than it was yesterday” can easily be translated into Hebrew, they lack the cultural resonance and history that “refuah shlema” possesses. As Rabbi Dr. Rachel Adler writes, “The language of liturgy is compelling because it is performative. No exposition or instruction, however theologically correct or socially responsible, can assume the power of performatives. Because traditional prayer language is performative, and because it is embedded in communal norms and deeply rooted traditions, such words of power are not easily replaced.”2
It is difficult to transfer meaning from one term to another without anything lost in the exchange. No other term can easily substitute for the weight of “refuah shlema,” and yet “refuah shlema” lacks the power needed to meet the needs that the full spectrum of human illness demands of our compassion. The communal norms we perform simply are not as wide as our communities.
The stakes of failing to bridge this gap, on the surface, are not so significant. Few Jews will question whether “refuah shlema” applies to them consistently with the meaning of the Hebrew words themselves. Even fewer, if any, will fail to recognize the well-meaning intent behind another choosing to wish them a “refuah shlema.” But prayer is not simply a reflection of existing theology (in this case, one of care and compassion for sick people), where the interpretation of the same liturgy can be molded around new theological interpretations. Prayer also produces, refines, and reifies our theologies. Continuing to use the phrase “refuah shlema” as a catch-all phrase to well-wish sick people ossifies the existing idea that all manner of illness and pain can be healed, and in so doing continues to reproduce a theology that fails to encompass the full range of pain and illness that people like me experience.
As I think about what I want my rabbinate to look like, I want to sharpen my capacity as a religious leader to create more expansive Jewish language that speaks to the whole of the Jewish community. With my own chronic facial pain in mind, I will endeavor to expand Jewish rituals to include a broad range of Jewish experiences and individuals. Particularly, I want to have a hand in creating healing rituals and language for people who won’t experience an end to their illness.
It’s for this reason that the nature of the question, “how have you overcome your facial pain?” belies the nature of the illness itself. This isn’t something I have learned to overcome in the sense that I have found the right treatment or learned to numb myself to a certain amount of pain. Certainly, I engage with my healthcare team of doctors, neurologists, maxillofacial specialists, and chiropractors regularly, and I have learned to mold parts of my life and habits around the ebbs and flows of my trigeminal neuralgia, but the pain never ceases to be painful, sometimes excruciating, and continues to impact even some of my most basic decisions.
So too, the lexiconic gaps within Jewish prayer and language to speak to experiences like mine haven’t been overcome. “Refuah Shlema” is, as it has been for hundreds of years, the dominant, and most singularly recognizable, method of wishing a sick person relief. The beauty, I believe, is found in the day-to-day work to power through and to turn pain into more expansive, inclusive Judaism. Much as I make the affirmative choice to wake up and continue to maintain my social relationships in some way, even if I have to change the way my mouth moves when I talk and eat to minimize (notably, not eliminate) the pain, so too I make the choice to continue to learn and study and tinker to build Jewish ritual and, in turn, shift Jewish theology to speak to people like me.
I believe it’s the work of anyone else living with chronic pain, especially facial pain, where our pain might be most visible in the expressions on our faces, to do the same – success isn’t in being “cured.” It’s learning how, day to day, to not just live with and manage the pain, but to help expand the social frameworks of how everyone else interacts with your chronic illness. It’s about learning how to push through the pain to continue to keep and build the communities around us. We owe it to ourselves to keep those bonds of community, and our communities owe it to us to reframe their compassion for us on our terms.
