My older sister died one week before my 13th birthday. I was hospitalized with Epstein-Barr in high school, and it seems to reactivate when my immune system is compromised. For 30 years, until the pandemic, I had no meaningful explanations for my exhaustion, pain, or the cognitive impacts that went with them. Well-meaning doctors trying to fit me into their existing frameworks worsened my symptoms with inappropriate medications. I am passionate about the complex interrelationship between inflammation, chronic pain, and psychological distress, a problem that has no coherent home in medicine. This is a globally relevant phenomenon with the potential to impact all of us, at some point in our lives, with devastating consequences. Psychological distress results in inflammation, which can lead to physical disease. Joints and soft tissues are vulnerable to inflammatory attacks. Immune overactivation likewise disrupts digestion. Neuroimmunological investigations into acute grief, for example, reveal significant physical effects, up to and including takotsubo cardiomyopathy, a sometimes fatal heart weakness. Studies of PTSD have demonstrated a robust relationship between emotional trauma and increased inflammation. Long-term inflammation results not only in chronic pain but a host of other serious health problems; it's implicated in diabetes, neurodegenerative diseases like Alzheimer's and Parkinson's, atherosclerosis, and some types of cancer. Inflammation, in turn, spawns mental health problems. Brain fog, reduced executive function, affective dysregulation, and sleep disruption are all consequences of the immune system's over-activation, along with poorer responses to SSRIs. Events that can cause inflammation, like grief or severe viral infections, occur every day. While they may be catastrophic to the individual, they are also normal parts of human existence. So then, logic might dictate that medical research invest significantly in treatment and solutions. However, the current cognitive frameworks and academic silos leave this complex problem largely unstudied. In the past, Western medicine benefited from dividing the body into organs and subsystems, each with their own attendant specialists. However, systemic issues are orphaned. The split between physical and emotional problems is even more severe. Patients with psychiatric diagnoses have documented difficulty having their physical illnesses treated, for reasons including stigma and baseline assumptions. The result is that debilitating suffering and disability arise from a medical blind spot. At the same time, we have many tools to lower inflammation, including lifestyle interventions, over-the-counter options like naproxen, as well as a significant suite of specialized autoimmune therapies. The gap is coherent medical and educational focus on the topic. The biological impacts of grief and emotional distress, and strategies for mitigating them, should be part of every hospital chaplain's toolkit. When indicated by life events, they should be part of routine checkups. Conversely, people experiencing illnesses and events that spike inflammation should also be routinely aware of the cognitive impacts. This shouldn't be left to individuals to discover, as it was in my case. I am going back to school in order to help medical researchers and clinicians access epistemological lenses that allow them to see these problems. As I begin my clinical ethics internship this fall, I will be working directly with the families of the dying and their doctors to find solutions. I have already spent years volunteering to do peer support, but this gives me the chance to make meaningful changes in the field that will spread far beyond the individuals I talk to. This scholarship would help me afford to live near the clinic, instead of driving 3 hours a day, and would be catalytic to my success and peace as I embark on this journey.

Some families have strong traditions in medicine, a family business or a craft passed down over time. In my family, we do non-profits. More specifically, all my life, I have been part of efforts to build the community's capacity to extend care to its members, at the county level. From a childhood spent coloring quietly during meetings for United Way, AAUW, and the community Fine Arts Center, to a young adulthood volunteering to help establish the local Community Foundation and launch a giving circle, to years spent quietly writing grants and marketing materials, and proofreading the 501(C)3 applications for new non-profits my family helped sponsor, the background texture of my life has been one of community service and philanthropy. Simply solving individual problems has never been enough. There has always been an emphasis on infrastructure, on strategic visions that look to the future. The giving circle is a prime example. Each member of Women Building Community only commits to give $5000 over 5 years. But by working together to create an endowment, the group has granted well over $300,000 to other nonprofits focused on women's and children's issues, and will be able to continue doing so in perpetuity. It's a force multiplier that allows everyone else to do more. I'm really proud of my role in that. I can't imagine pursuing a career that doesn't have the public good at its heart. Right now, I am in the school of Public and Population Health at the University of Texas Medical Branch. I have the same goal of creating change that acts as a force multiplier, persists over time, and allows other people's efforts to be more efficacious and meaningful. I have seen first hand, through personal experience and reading the testimony of others, that the medical system and medical education are failing both patients and clinicians. The systems and structures of knowledge are simply insufficient tools for the challenges we are faced with. There are blind spots, areas where the lived expertise and suffering of patients could improve practice, but instead, they are uncollected. Scientific procedures and disciplinary boundaries manufacture areas of ignorance. Emotional and social factors invisibly warp the science that can be conducted. While that may sound dire, I am convinced that we can actually do something, here, to improve not just individual cases, but the way that medicine is understood and practiced. The disciplines of medical anthropology, sociology of knowledge, and clinical ethics are all fields that have the potential to address these critical problems, and to actively reshape medical education. Making change at the system level will change outcomes for patients at the local community health authority level. At least that's my goal. I want to go back for my PhD to make this kind of difference in how medical education is conducted and how medical care reaches community members. I think we live in a world where everyone is doing their best, but considering the overwhelming challenges being faced by humanity, we need to do better. We need to make better decisions, from clearer information, so that our children and great-grandchildren have a chance to thrive. Right now, I am going back to school with help from family, struggling with a 1.5 hour commute. The exhaustion is significant and likely the biggest barrier to my success. I am seeking a scholarship to help me pay to live in the city where I go to school, so that I can concentrate on my studies and volunteering. This scholarship would create a catalytic difference in my ability meet my goals and help my community.

In 2019, I ended my marriage, my tenured position as a composition instructor, and left my home of a decade. This was a decision of necessity. In the depths of overwhelming burnout, I left with no idea what the future might hold, only the knowledge that the life I was living wasn't survivable for me. Just as I was beginning to recover and considering a return to rhetoric and disability studies, 2020 and long covid reshaped my horizons. I have spent the last 8 years reading, thinking deeply and trying to learn ways to work with the constraints my body required. I am no longer simply interested in a career. I have seen first hand, and through reading the testimony of others, that the medical system and medical education are failing both patients and clinicians. The systems and structures of knowledge are simply insufficient tools for the challenges we are faced with. There are blind spots, areas where the lived expertise of patients, families, or even clinicians become inadmissable testimony. Scientific procedures and disciplinary boundaries manufacture areas of ignorance. Emotional and social factors invisibly warp the science that can be done. The disciplines of medical anthropology, sociology of knowledge, and clinical ethics are all fields that have the potential to address these critical problems, and to actively reshape medical education. while that may sound dire, I am convinced that we can actually do something, here, to improve not just individual cases, but the way that medicine is understood and practiced. At least that's my goal. I want to go back for my PhD to make this kind of difference in how medical education is conducted and medicine is practiced. I think we live in a world where everyone is doing their best, but considering the overwhelming challenges being faced by humanity, we need to do better. We need to make better decisions, from clearer information, so that our kids and grandkids have a chance to thrive instead of simply picking up our mess. Right now, I am going back to school with help from family, struggling with a 1.5 hour commute. The exhaustion is significant and likely the biggest barrier to my success. I am seeking a scholarship to help me pay to live in the city where I go to school, so that I can concentrate on my studies and essays. This scholarship would be a catalytic difference in my ability to succeed.

When I was 17, I was hospitalized with a fever of 104 and severe muscle weakness. I couldn't stand or focus my eyes. When the fever came down and I could think again, doctors told me I'd had a variation of Epstein-Barr virus. Then I was sent back to school and daily life, to continue achieving as if nothing had changed. When I started experiencing debilitating fatigue that kept me bed-bound for days, no one made the connection. The logical assumption was that I was experiencing depression, or perhaps grief for my sister's death. Problems with my digestion, my menses, my sleep, with migraines and exhaustion, joint pain and heart difficulties, all piled up at the feet of separate specialists with separate prescriptions. All too often, an exhausting round of testing was met with a noncommittal response and the assumption that the problem was psychiatric, not physical. It took ten years for me to get my undergraduate degree. Multiple semesters were wrecked by a bout of exhaustion or a health collapse that no one understood. However, I was determined to continue. My love of reading and writing were my solace and motivation. I took fewer classes each semester, got ADA paperwork to withdraw instead of failing, and learned how accommodations worked. My bachelors thesis was a poetry manuscript that dealt with themes of grief and chronic illness. Like most of the chronically ill, my understanding of my condition and my mitigations are the result of my legwork and research. The resilience to keep looking for answers is as significant as staying in school. COVID-19 was actually a profound turning point for me. Research into long COVID made it clear that reactivating Epstein-Barr was a consequence of the virus. Before, I hadn't been aware that EBV clearly mapped to my symptoms. The doctors at the long COVID clinic confirmed this, while offering neither paperwork nor workable solutions. Research has also shown me that I do have significant hypermobility issues, exacerbated by the EBV. So while I don't have the stretchy skin or an EDS diagnosis, I do have several symptoms from the hypermobility spectrum, like joint subluxations, hyperflexibility, and most significantly, smooth muscles that don't perform to standard. So the low blood pressure-tachycardia-fainting that doesn't quite qualify as POTS is connected. Over the years, I've received diagnoses of IBS, PCOS, migraines, and long COVID. Of these, the one I found most useful for school paperwork was the migraine diagnosis. The lack of paperwork for my other diagnoses is part of what I want to change. Right now, I am taking a disability justice, patient advocacy perspective into graduate studies in clinical ethics and the medical humanities. At the masters level, I have already presented at a Hastings Center Ethics conference asking doctors to incorporate ADA paperwork into their practice, especially when there is no mitigating treatment. I've also published an award-winning essay in TETYC on the topic of education, disability, and accommodations, asking teachers to build syllabi that don't disqualify the chronically ill. If more students had access to the accommodations they are legally promised, perhaps we would all be suffering less. This scholarship will help me afford to live close to the school. Right now, I live with family and commute 1.5 hours each way. With a limited energy budget, this means taking fewer classes a semester. The scholarship could help me earn a PhD before reaching retirement age. Regardless of the cost, I'm determined to change medicine to do better for people like Jules and myself. The doctors are doing their best, and it's simply not enough.

Exactly a week before my 13th birthday, my big sister died in a car accident. It sliced my life into two sections: a before and a long ringing after. Laura was funny and furious, and she was fighting our religious parents' attempts to control us, to protect us from everything that the world had to offer. I had been trying so hard to be small and perfect, to avoid notice or regulation. But afterwards, I had to carry her rebellion and self determination for both of us. Or rather, her rebellion carried me. It pushed me to fight for myself and others. Though we didn't know it at the time, in hindsight, Laura and I had a matching set of disabilities. She was dyslexic as I am dyscalculic, and had she lived she almost certainly would have been diagnosed with ADHD to match mine. The two of us together would have made a fantastic team supporting people with disabilities and learning differences. Laura was always bolder and better with people, and she was persistent, practical, and persuasive. She seemed like she could always find a way through, even if she had to make it herself. She would have been a fantastic advocate and coach. I, on the other hand, created and taught reading and writing curricula for people with learning differences. I don't have all the interpersonal skills that she had, but I am really strong at reading comprehension and figuring out how systems work. If she were here, my scholarly abilities and her practical skills would have made us unstoppable as an education and advocacy support team. As I said, though, I have spent my life letting Laura's rebellion and bravery carry me and trying to impact the world for both of us. Remembering her courage and humor, and trying to make it my own, has helped me carve paths out of confusion, like she used to do.