Imagine waking up after a surgery that will change your life completely. I have had to learn to speak and eat at least three times, and it is still very difficult. I lost my career and my social life. The new me is very different from who I was. I am constantly reminded about this disease. I have prominent scarring on my face. I can never pretend, not even for one night, that I never had it. I wish you understood the hardships of this disease, how it affects you every day, including how you can imagine your future, constantly, and forever. - EK
Patient stories form the heart of see me, hear me, heal me. Beginning in early 2015, people diagnosed with head and neck cancer (HNC) and their family members (collectively referred to as patients) have shared details about their complex and multi-layered experiences of treatment and recovery. Limited public awareness of lived experience such as theirs has resulted in significant challenges for patients both within and outside the healthcare system. The painful, lonely and stigmatizing journeys they have described, which are not easily conveyed through conventional research approaches, inspired us to develop a research-creation approach to co-build awareness and understanding of HNC illness experience. Our interdisciplinary project involves patients, artists and researchers who are collaborating to improve the quality of life of people who have experienced HNC.
The mutually respectful, reciprocally influencing relationships we have built (and are continuing to build) have significantly contributed to how our project has evolved. We are confident that our collaborative commitment to realizing emergent possibilities for the project will impact social/public awareness, engagement and responsiveness to HNC illness experience. Funding proposals for ongoing dissemination are in preparation. Our first exhibition is scheduled for January, 2017 at the dc3 Art Projects Gallery in Edmonton, Alberta; our first international exhibition is scheduled for April, 2017 in Seoul, Korea.