I was born with congenital heart defect (CHD) and diagnosed with Marfan syndrome (MFS), a genetic systemic 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 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. I always loved the written word and 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 living with Marfan syndrome has meant for myself and my life. On the outset, I did not quite realize how demanding yet cathartic this would be for me. I’ve found that I am not alone in wanting to write about my experiences and have had this path illuminated for me by incredible mentors, scholars, activists and therapists.
In 2012, I graduated from Wilfrid Laurier University with a Masters of Sociology: Families, Health and Well-being. Since that time I’ve worked in health services research and academic practice studying how policies, programs and practices create the conditions in which people give and receive care. I also work closely with and mentor clinical staff on how to study and evaluate their practice. Through this work I’ve found myself embedded in a hospital network where I am also a patient, giving me unique (and sometimes difficult) insights into the complexity of navigating our health care system. I’ve also engaged in numerous patient advising and/or advocacy roles in non-profit, government and research.
I decided to return 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, though complementary ways to my previous degree.
My earnest desire to work more closely with individuals, families and communities touched by illness has led me here.
Through my social work training I gained valuable therapeutic skills in hospital and community settings working alongside clients through illness, transitions, 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 uncertainty, shame, sadness, anxiety, fear, anger, self doubt but also laughter, relief, expression, vulnerability, triumph and re-connection.
I turned to Reiki, a Japanese technique for stress reduction and relaxation that also promotes healing, during a health crisis in 2016. Since that time I completed my level I and II reiki training and am currently working towards my Master Practitioner certification with the Canadian Reiki Association. I’ve found reiki to a be a beautiful complement in my own healing journey and an important spiritual practice in my life.
I continue to work towards unraveling how to live well with chronic illness, exploring what it means to heal and how we might learn to find peace – body, mind and spirit – wherever we are on this path.