I was originally diagnosed in October 2013 with grade 2 Astrocytoma. I was 27 years old and in my first semester of graduate school at Yale, studying Health Policy. I was experiencing problematic symptoms a few weeks before classes began. After an MRI found a lesion in my right frontal lobe, I underwent a craniotomy in mid-October and withdrew from classes for the semester. A few days after my surgery, I received that life changing call informing me of my diagnosis.
My graduate program started off as a journey to better understand the patient experience. I wanted to learn more about health quality and how to make the world a better place on the policy level for individuals and families who access health care. Most importantly, I wanted to learn more about patient needs. In the end, I got exactly what I sought and more. I not only completed my degree this past December, learning about how our health care system works and what we understand about quality issues, but I even got to be a patient. I had the opportunity to personally navigate the crazy system of specialty care, surgery, recovery, cancer uncertainty, impacts of chronic disease, financial insecurity, finding community, rebuilding an identity, accepting the support of family and friends, and coping with the concepts of death and dying. I believe the experience has allowed me to be an even more effective champion for patients everywhere.
In the Fall of 2014, I transferred my care to the amazing Dana Farber and began attending events put on by their phenomenal Young Adult Program. In 2015, I attended my first YAP annual conference there and loved it! It was incredible to meet so many young adults and really feel for the first time that I was not alone. I enjoyed it so much I knew I’d be back the next year and requested a workshop on having difficult conversations about death and dying. This was a topic I had especially struggled with since my diagnosis and thought that I couldn’t be the only one who was struggling. Then, this past February, I was notified that the workshop would be happening at this year’s conference and that the YAP program would like me to get involved by being a peer leader for the discussion. I was thrilled that not only would the workshop be happening but that I’d be able to be a part of it by sharing my story and perspective; and hopefully having a positive impact on others who were struggling with the topic.
After sharing my story at the workshop, it was felt that my message was relevant to not only young adults but to the general population as a whole. That is when the Aging with Dignity organization reached out to me and requested I create a video of my presentation directed to everyone regardless of health status. The video’s goal was to provide a different perspective and potentially helpful resource option that may help people begin to process and address this difficult and often overwhelming part of life.
In addition to being an advocate for having these difficult conversations, I hope to become a practice manager for a health care system looking to improve patient experience, communication, and care coordination while continuing to provide outstanding medical care to the community. In the meantime, I enjoy living on the beautiful coast of Maine with my wife and seizing every day on this wonderful planet.
Tara Baysol is a recent graduate of Yale’s School of Public Health Masters program. Prior to pursuing her masters she worked in various project management and administrative support roles within healthcare, human services, and research settings. Inspired by her time in human services, Tara pursued an opportunity to explore health quality research in hopes of better understanding how we measure patient experience. During that time, Tara familiarized herself with the research field and developed a greater interest in quality improvement initiatives within health care. Since then, she has worked in community hospitals and practice settings to help improve systems and patient experience. As a graduate student, Tara focused on the Affordable Care Act’s impacts on the delivery of health care, as well as the challenges surrounding patient outcomes and quality improvement initiatives.