I am a rare disorder patient, research associate, sociologiy-informed social worker and qualifying holistic practitioner. My passion for improving the experiences of individuals, families and communities touched by illness has underscored the majority of my work within complex systems to date.
I was diagnosed with Marfan syndrome, a systemic genetic connective tissue disorder when I was two and a half years old. I have lived through 15 surgeries to date, including two open heart surgeries at the age of 10 and 12 and continue on navigating through a life with chronic illness.
My journey growing up with Marfan syndrome and visual impairment has very much guided the academic and practice focus I am working on/towards today. Through sociology and other social sciences I found that I could analyze and express my biographical experiences of illness using scholarly and narrative techniques. In doing so, I have come closer to understanding what Marfan syndrome has meant for myself and my life. I did not realize how therapeutic this would for me. I have also found that I am not alone in wanting to write about my experience and have been showed down this path by some incredible mentors, scholars, therapists and activists.
In 2012 I graduated from Wilfrid Laurier University with a Masters of Sociology in the stream of Families, Health and Well-being. As I took up more pronounced patient advocacy roles and began working in the healthcare sector I learned that drawing from both my formalized research skills and my experiential patient insights is not, in any way, a straightforward task. I have to admit that I was somewhat naive to the many challenges and paradoxes – emotional, moral, technical, and structural– that I would encounter while trying to speak from these two forms of knowledge. Throughout it all I continue to feel a responsibility and a desire to share my experiences in hopes of connecting with others and creating dialogue around the way we think and talk about health, illness, medicine and disability.
Since 2012 I have worked in health services research and academic practice with an expertise in qualitative research methodologies. My work includes key responsibilities for research study conceptualization, design, coordination, analysis, evaluation, critical appraisal and ethics in addition to consultation, academic and technical writing, teaching, presenting and workshop facilitation. I still believe that our lived experiences influence the way we conduct ourselves in our daily lives as well as in our work. As a result, you will find that wherever possible, I gravitate towards research and practice interests that I can also relate personally to and/or I feel are grounded in evidence of some form. It is a challenge in and of itself to balance work and life with a chronic, episodic illness.
I returned to graduate school in 2016 for my Masters in Social Work at the University of Toronto after a delayed start due to health issues. This degree felt like it was a long time coming and I once again found my mind and heart expanding in different, through complementary ways to my previous degree. My desire to work with individuals and families, person-to-person, in addition to macro level policies and systems has led me here.
Through my social work training I gained valuable clinical and therapeutic skills in hospital and community settings working alongside clients through illness, transition, end of life, grief, trauma, relationship strain, isolation, system navigation and much more. As a social worker, I bear witness to the incredible strengths and resiliency of the human spirit from a different position. I feel privileged to hold space for those wading through moments of depression, anxiety, fear, anger, self doubt but also laughter, vulnerability, triumph and re-connection.