Not invisible: a photographer's mother faces MS

Photographer: Jamie Woytiuk

Essay: Jamie Woytiuk (originally written for The MS Society)

Editor’s note: We made the choice not to caption the images in Jamie’s series of photos. While I am a strong believer in the importance of well-written captions, in this story, I think the images speak more beautifully without words, and all that we need to know can be gleaned from the pictures. I invite you to look through the work slowly and appreciate all that Jamie has captured in each frame.

My mom, Joanne, was diagnosed with primary-progressive multiple sclerosis (PPMS) in November 1998. I remember my dad taking me downstairs to the basement to tell me that my mom had MS because my mom couldn’t bring herself to say those words to her child. 

My mom always thought of her children first, pushing her fears aside and worrying about how this diagnosis would affect me and my younger brother. At the time, I didn’t notice any deficiencies within her body, so I didn’t understand what this disease was capable of. I actually teased her because she wasn’t able to run across the road quickly with my brother and I. Little did I know that her health was going to decline extremely fast. Her foot began to drag more often, and she would choke on her saliva. The choking scared me, because we had to wait and watch until it would stop. 

Within five years of her diagnosis, my mom went from being a healthy, independent person to a shell of her former self. MS was relentless and unforgiving. My mom had no control over her limbs and bodily functions. Her speech was impaired, along with her cognitive functions. She experienced pain so extreme that I thought she might die. Watching my mom’s health deteriorate was heart-wrenching. I was watching her die a slow death and could do nothing to stop it. 

My mom never cried in front of me while I was growing up. That’s not to say she never cried – just not in front of me. Growing up in an unstable home, my mom was forced to learn quickly about responsibility as she helped raise her younger siblings. It gave her a silent strength that she carried for the rest of her life. When she was diagnosed with MS, she didn’t cry while I was around. I don’t remember her being emotional or speaking about her struggles. But this was my mom. I know she didn’t let this out because she was protecting my brother and I. Ultimately, she tried to keep everything the same and pushed through it all because of her love for us.

But as my mom’s MS progressed, quickly and steadily, she started to cry regularly. In fact, she cried all the time. I can’t remember a visit within the last 10 years, where she hasn’t cried. When the crying first started, I didn’t know what to do. I wanted to make it stop, but I didn’t know how. Eventually I realized that I just need to be a safe space for her to cry, to release whatever she is feeling at the moment. At times, I feel myself choking back tears. I need to remain strong for her and allow her to have this moment. 

My mom was 38 when she was diagnosed – young, with two kids and the rest of her life ahead of her. We tried all possible methods of treatments, including stem cell transplants and CCSVI (chronic cerebrospinal venous insufficiency). However, her condition was so progressive during those treatments that there was little improvement. During this time, I couldn’t come to terms with my own emotions surrounding her and her MS and I avoided most things. I started a photography business in 2010, but I never photographed my mom. I was scared to acknowledge that side of my life publicly. My mom had been residing at Wascana Rehabilitation Centre for some time and I noticed that she became invisible to others. People would walk by and ignore her, not understanding that she was still inside her debilitated body. My life and perspective started to shift. I wanted people to see her.

Two years ago, I gained the courage to ask my mom if I could start taking photos of her and our time together. Thankfully she agreed, and this turned into a life long photography project. Photographing her has been therapeutic for myself. It has also been a way for us to reconnect and spend time together. As a child who has turned into the mother figure, this was a way for me to be her child again. 

Because of this project, so many people have been able to see my mom either again or for the first time. I recognize the importance of what this work has done. Watching my mom become engulfed by her illness has been gut-wrenching. But, by that same token, it has taught me to find beauty in unexpected places.

Jamie Woytiuk became curious about photography at a young age, influenced by her artistic parents. She would often take her camera to school or on play dates with friends and document her childhood experiences through the lens. 

That same childlike curiosity has lived on within her as she continues to document the stories of her own life and the lives of others. Her inspiration for stepping into the world of documentary photography began with her mother and her journey with Multiple Sclerosis. 

Through her mother's journey, Jamie has come face-to-face with the polarity of living and dying. It's given her a deep understanding of the complex nature of humanity and how she can use that understanding to create art that gives people a chance to have their story told and their voice heard.