Wednesday, June 27, 2018

'The tears represent sadness, but sort of a beautiful sadness'

By Louise Kinross

Jessica Chan, 20 (above), made a mask to convey what it’s like to live with a brain injury. At age 17, she had surgery to remove a brain tumour. Today, the University of Toronto student is one of several young adults showing masks they created at an Unmasking Brain Injury workshop at Holland Bloorview. The goal is to increase public understanding of this invisible disability.

BLOOM: Can you tell us about your brain injury?

Jessica Chan:
I had a brain tumour. I was having really bad nausea and headaches and I went to the family doctor multiple times, but they brushed it off as stress related, because it was exam time. They never even considered that it was possibly connected to this. Some of the exams I took, even though I felt like I was going to pass out, and some I couldn’t. That summer, when my vision was getting wonky, I went to the eye doctor to get glasses, and the doctor saw the pressure behind my eyes and sent me to the emergency room at St. Michael’s Hospital. They put me in a scan and saw a pretty big mass, and I didn’t go home for months. I had surgery there and came here for rehab.

BLOOM: How were things different for you after the brain injury?

Jessica Chan:
Before I started noticing differences, I could remember things easily, including big chunks of text. Now the way I absorb material is different, and I have to get the general concept first. Before I could continually work for hours, and now I have to learn to take breaks and hold myself back or I tire myself out. 

Before my diagnosis, people around me said they started to notice that I seemed to take longer to respond, and wasn't as quick to get humour or jokes. They said I seemed more distant.

BLOOM: What about changes after your surgery?

Jessica Chan
: When I first woke up from surgery my right side was completely paralyzed. I had to retrain it, and it’s still not as great, but I’m able to move and be almost as active as I used to. I used to play volleyball and be a cross-country runner, but when I went back to school after rehab they wouldn’t let me back on the volleyball team. That was a big blow. I was also in band and played trombone. I was able to play here in music therapy, and that was something from before that I could still do and that kept me going.

BLOOM: What has been the greatest challenge?

Jessica Chan:
Trying to get back to where I felt like I was before. The summer of my brain injury was before Grade 12 and that was a big year, the year before going to university. When my parents told me I couldn't go back to school in September, that was a big blow. You feel like you had all of these things on your plate, and the plate has toppled over.

BLOOM: I know that some students find the invisible nature of the injury difficult when they go back to school.

Jessica Chan:
When I went back to school people kind of knew what happened, but they didn’t know the extent, because I was walking and talking similar to how I had before. They didn’t notice my issues with right-sided weakness, and they couldn’t see that I had a hard time understanding. They didn’t know I’d had to relearn how to talk again. In our school, no one really talked about disability. I did a TEDx talk to the school to share my story. The theme was mindfulness, and I used my story to share my own experiences and the importance of taking care of your mental health while dealing with a physical injury.

BLOOM: Do you have any practical coping strategies that might help youth who are earlier along in rehab?

Jessica Chan:
Build your support network. Find things and people that help you get through it. Make sure you keep connected with your friends. My family was an important part of my support. I also relied on support from health professionals. When I was in the ICU, a big part was building mini-relationships with the nurses. Don’t be afraid to open up and make connections.

BLOOM: How have you changed?

Jessica Chan:
I had high grades and I’ve always been an over-achiever. I was going to enter a business program, and I put a lot of expectations on myself. I think I cared a lot about what I feel are superficial things now.

When I couldn’t pursue that at the pace I wanted, I had to start looking at other qualities I have to offer—other than my GPA. Through this process I was introduced to health care, and the support I was provided reminded me that that’s more of what I want to do with my life. I’m now at the University of Toronto in a psychological and health sciences program, and hope to specialize in mental health studies.

BLOOM: Can you describe your mask and why you decorated it the way you did?

Jessica Chan:
I designed it on the spot. The red side represents the one-sided weakness and the pain you feel targeted in that area of your head. I feel pain is most closely associated with red. The rest is mostly a lighter, brighter blue, the wellness part and me fighting to make it okay. Blue sky, blue waters, clarity. When you think of those calm words, you think of the colour blue. And when you combine red and blue, you get my favourite colour, purple.

The tears represent sadness, but sort of a beautiful sadness. This experience has given me many opportunities that I wouldn’t have otherwise had, and there’s some beauty in that. I feel like I was pushed forward to get more insight into myself a bit earlier than I would have. The tears are for pain and growth.

The floral arrangement of gems represents the beauty that spontaneously occurs as a result of what I've been through. The new paths, connections and friendships are represented by this colourful, sparkly collection.

BLOOM: What are your hopes for the future?

Jessica Chan: I’d love to be a counsellor, a psychologist. In whatever I choose, my main goal is to be able to help people in a meaningful way.  I was also really inspired by the speech-language pathologist I had here, so that’s another pathway.

BLOOM: What interested you about speech therapy?

Jessica Chan:
It was the testing. I remember there was a picture of a hammock, and I couldn’t for the life of me remember what the word was.

BLOOM: Because of problems with word finding.

Jessica Chan:
I couldn’t find that word. I tried to think about it for a long time and when I finally got it I was amazed—that I’d lost a word I knew my whole life. It hit me how fragile language really is, but also how important it can be. 

Thinking about the rehab process and helping people find words could combine with my interest in psychology and my passion in writing and language. Because I’ve had that experience of not being able to find words, I have insight into what it feels like for the patient. I think that would make me more empathetic.

BLOOM: We just did a story with Dr. Brian Goldman, who said that the best doctors are ones who have been patients. Did you find making the mask valuable?

Jessica Chan:
Yes. Every time I have to do something that involves thinking back, it helps me realize how I’ve grown. While living it, you don’t think about all the little things you’ve accomplished through this process. Having a chance to make my mask and explain my story helps me realize how far I’ve come. I also have a radiation mask that I keep at home, as another reminder. It was starting to look a bit scary, so after doing my mask here I covered it in flowers. Now it’s a decorative piece that isn’t as frightening.

BLOOM: And the flowers are about growth.

Jessica Chan: Yes, the growth part.
It’s not just about the physical symptoms, it’s the whole process that happens to you and the changes, and the emotional impact—especially the little things. There are multiple layers. It’s not exactly being comfortable on the bus telling people you can’t give up your seat, because you will fall over. It’s subtle things that people fail to recognize.

BLOOM: You mentioned emotional impact. Can you talk more about that?

Jessica Chan:
It was hard. It was shocking. It takes a while to really digest and understand all of the subtleties of how you’re impacted. Every time you’re told you can’t do this now, it’s another blow to your self-esteem, your ability level. Or being told you have to do something this way, instead. Before, I could easily serve a ball, but now, after I had to train for it, I still can't do it as well as before. It’s having to work back to the level you were. Everything takes longer to process and do.

BLOOM: It sounds like you would need a lot of self-compassion.

Jessica Chan:
That’s hard for me to get. It’s still hard for me to comprehend why this happened to me. I’m in second year at university, and so many people I know are already ahead, in their final years, and they’ve had co-op positions and jobs that they’ve kept. You can’t help but compare.

BLOOM: But it sounds like you’ve developed in other ways.

Jessica Chan:
Having people tell me about my insight and level of compassion that they don’t have, or can’t really ever get, that was a big realization to me that this might have turned into a different path, but I went along the path just as much as they continued along theirs.