by Angela Marino
After being diagnosed with Multiple Sclerosis in 2009, my mother’s body and mental health deteriorated rapidly. The person who raised me was altered; she was growing into someone who was less confident in her abilities and saw her disease as a defeat. As an outsider I couldn’t understand how someone who I looked to as a role model could let a disease affect her willingness to live. I held a lot of anger and ignorance towards understanding and grasping the effects of this disease. I am still working on accepting the new person my mother is now, and honestly, there are days where I reminisce about who she was before the disease. However, for the most part, I am learning new things about this new version of her and dealing with the difficulties of seeing someone I love deteriorate.
When I decided to pursue my MFA in painting at the University of Alberta, I began a new chapter in my education that granted an unexpected growth and acceptance of my mother and her disease. Knowing I wanted to pursue my research on my mother and our relationship, I began to reach out to people within the university dealing with Multiple Sclerosis to further my comprehension of what my mother was going through. This experience allowed me to realize that my mother could not control what was happening to her, in a physical sense, and also how her inability to take care of her body led to an increase in mental health issues as well. One researcher and Ph.D. student, Curtis Benson, showed me his research on exercising with Multiple Sclerosis that awakened this sense of urgency I wanted to bring to my mother. For as long as I can remember, my mother has not been the most active person due to her Muscular Dystrophy, Arthritis, and Fibromyalgia, but when MS was a part of the picture it only further limited her physical activity. I questioned my mother about why she doesn’t workout, and her response shocked me. Her doctors at the beginning of her diagnosis told her to avoid any physical activity, which is why her physical disability progressed so quickly. If she had only tried to move her body more, she could have prevented the severe nature of her current weakened state.
I started wondering how I could reach out to people like my mother and inform them about the new research on the benefits of exercising with MS. BeastModeArt was born from my passion for raising awareness of exercise for MS patients and their families. What began as a performance piece to make a statement about workout phenomenology and the benefits physical activity has on the mind and body for those people with illness, turned into a passion that advocates art/workout classes for people with MS. Beginning my journey with a YouTube channel called BeastModeArt, my videos demonstrate ways anyone can use exercise and their body to create a form of drawing. There are currently twenty-one videos that demonstrate various exercises that people can perform with different drawing materials. My challenge that began this channel was to experience the embodiment of my mother’s pain through restraining my healthy body and pushing my limits of my body to potentially feel her fatigue and strain. It was through making these marks on the paper that I thought if only my mother had the opportunity to use her own body to make art that maybe this alternate way of muscle growth would have potentially changed her perspective on being active and her mindset on the disease.
Since May 2016 I have performed BeastModeArt twice for thirty-minutes in front of various crowds of people and academics. Many have responded with an overwhelming sense of empathy for my circumstance. I would like to push the next stage of development for my artistic research into the community and reach out to the MS Community in Edmonton, either on or outside of campus. I hope to organize a collaborative thirty-minute endurance based activity with mark making that incorporates a combination of drawing and exercising once a week for four months. Using weighted resistance and various drawing based media, I will lead participants through a timed routine of exercises that will incorporate the whole body as a drawing tool. Through the act of drawing and exercising, I hope to teach and show MS patients alternative ways to develop muscle outside of the gym. Through the collaboration of bodies that present their limits and challenges, I hope that those involved will see how beautiful and strong their bodies are and how they can produce art that showcases their disease not as a negative, but as a positive way to speak about MS.
If you are interested in supporting Angela’s project, you can reach her at firstname.lastname@example.org.
Photography courtesy of Michael Woolley.