Omar says brain injury has turned his shy personality bubbly

By Louise Kinross

Rehan Siddiqui tells the chilling story of how his son and daughter were hit by a car that went through a red light. “She hit both kids going 60 km an hour,” he says. “How could the driver not realize the light was red? There was nothing wrong with the signal.”

Rehan, who sleeps inches away from his son Omar’s hospital bed at Holland Bloorview, says that Omar suffered a severe brain injury and was on life support for 19 days. He spent two months in acute-care, and has been here since January.

Omar, 14, has a slightly different perspective. “It’s a great story to tell my kids,” he says with a smile. “It was like one day I fell asleep, and the next day, I woke up in a wheelchair in this hospital.” The other thing he woke up with, he says, was a new personality.

“Before, I used to be really shy and quiet. I would never crack jokes. I was never brave enough to raise my hand up to answer a question in school. When we did presentations, I wanted to go last.”

Now, “my family says I can never stop talking. I’m always cracking jokes, and I like acting. 'Reporting live,' he says, holding a mock microphone, 'right now, I’m doing an interview with this young lady.'”

When Omar is discharged in two weeks, he says his first order of business is to put together a video for his YouTube channel. “I want to tell the story of my accident and recovery. Bloorview said it might put it on their website for other kids to see.”

Child-life specialist Amarens Matthiesen says Omar has been a great support to other children on the unit.

For example, when Omar encouraged one boy, the patient smiled for the first time. “I said ‘Oh hey, I was just like you. I was sound asleep for a month, and I needed to be in a wheelchair. But look at me now. I can jump. I can run.’ I gave him a lot of motivation.”

Omar used to want to be an architect. “I love to build stuff, and me and my father do handiwork around the house. But I changed my mind since my accident. Now I want to become a YouTuber when I’m older.”

Omar says his best advice for rehab staff is to have fun with patients. “I think most are very good at having a sense of humour, and joking around. Some are really serious, which makes me feel a little uncomfortable.”

Omar says the hardest part of rehab was when his favourite child and youth worker injured herself, and was off work. “She was a beautiful, caring woman who I loved. She would push my wheelchair everywhere, and she would do anything to make me laugh. We had really funny jokes. We were heart to heart.”

Omar is excited about returning to school. “He’s a miracle child,” his father says.

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'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.

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After a near drowning, a teen accepts she's 'a different person'

By Louise Kinross

Recently, Holland Bloorview family therapist Caron Gan sent me this message:

‘Yesterday I went to pick up a prescription at my local drug store and was served by a former [patient]. She had sustained a significant brain injury from a near drowning, and was not expected to live. In spite of this, she made a great recovery and was determined to be a pharmacist...Her mom has been instrumental in supporting her daughter. Seeing her behind the pharmacy counter brought such joy to my heart. I wonder if this could be a story to inspire others who are in the earlier stages of their rehab journey?’

In 2011, Chantel Asamoah almost drowned when she was pulled into an undertow at Woodbine Beach in Toronto. Chantel, then 15, didn’t know how to swim and was playing in the water with friends. One friend, a lifeguard, tried to pull her out, but Chantel was in such a state of panic that she pushed her down. Her friends ran to call 911. An emergency crew arrived, but couldn’t locate Chantel, so they formed a search line with others on the beach and walked into the water. “When they did find me I’d been under for about 10 minutes and had a very weak pulse,” Chantel says.

We spoke about Chantel’s brain injury and how she’s learned to cope with it in her journey to become a pharmacist. She’s almost finished her third year at the Leslie Dan Faculty of Pharmacy at the University of Toronto.

BLOOM: What was your prognosis when you got to the hospital?

Chantel Asamoah: The doctors told my mom I wouldn’t be able to walk or talk, and would essentially be a vegetable. They weren’t sure if I was going to make it, and they asked if she wanted to donate my organs.

I was at SickKids for two weeks and the first time I woke up my mom said I was confused about what happened and why I was there. I still have no memory of the accident. When I woke up I thought I was younger than I was. After SickKids I was at Holland Bloorview for two months.

BLOOM: What was the biggest challenge?

Chantel Asamoah: My memory. I couldn’t remember what I had eaten the night before, and I couldn’t remember how some family and friends were related to me. There was also a big impact on my processing speed. It took me a very, very long time to take in information. My mother noticed that generally my personality was different—I would become agitated more quickly and my responses were more emotional. Speaking and eating were okay, but I had some problems with word finding.

When I first came to Bloorview I was in a wheelchair. Then I began to walk, but I was a lot clumsier and had problems with balance and coordination. That’s what I worked on in physio.

Before I was injured I played sports at a high level: basketball, volleyball and flag football. That was the end of me being involved in sports.

BLOOM: How did you cope with all these changes?

Chantel Asamoah: At first I was kind of angry about it. I didn’t want to accept it. I just wanted to pretend that rehab was something I had to do, but when I got out of here, my life would be the same. Now it’s been almost eight years, and I’ve definitely accepted my brain injury and I’m working on my coping skills.

BLOOM: You mentioned your mom felt your personality had changed. How did you feel compared to before the injury?

Chantel Asamoah: I felt like a totally different person. Things that came naturally to me before weren’t the same anymore. It was harder to do simple things, like playing sports. I was pretty emotional about it because sports had been a huge part of my life.

In terms of studying, I was a very smart student. I wouldn’t say my brain injury increased or decreased my intelligence, but it made it harder for me to study. Something that before took me an hour would now take three hours. I had to take a lot of breaks and I was easily fatigued and had to take naps. And it was hard to concentrate in class.

Part of accepting that you have a disability is accepting that others may not completely understand. For example, when I first went back to high school, most people knew I was getting accommodations. I was still performing well with the same marks, but with more effort. My other peers would tell me ‘Why do you get extra time for an exam when you get higher marks than me?’

BLOOM: I’ve heard other youth with brain injuries talk about how they lost friends after the injury.

Chantel Asamoah: The whole situation was hard on my friends, especially the ones at the beach and the ones who came to the hospital to see me every day. They thought everything was the same. It was hard for them to cope with the fact that I was a different person.

I would say I lost a lot of friends. But I was also able to have new friendships with people who didn’t know me before the incident. So it was a brand new slate.

It was especially hard for my mom to understand that the way I process things or react to things is slightly different. Caron Gan made a big impact on my mom’s life. Her sessions with my mom helped her to understand how to better cope and deal with me as I was transitioning from hospital.

BLOOM: Can you talk about that transition?

Chantel Asamoah: When you’re in the hospital, everything is idealized, compared to real life.

BLOOM: Do you mean protected?

Chantal Asamoah: Yes. It’s not till you leave the hospital that you’re dealing with everyday stressors. When I left, Caron visited regularly with my mom at home, which was good, because my mom doesn’t drive and works.

[Social worker] Val Lusted met regularly with me at my high school, to help me cope. I had a lot of anxiety surrounding the fact that I was diagnosed with a brain injury, and wondering how it would impact my relationships with my friends or work or the sports I used to be involved in. One of the things Val did was talk about relaxation techniques. I still use them when I’m extremely stressed out, especially at school.

Before my accident, I was a perfectionist. That is very hard to do when you have a brain injury. When I first got out of the hospital, I was fighting the diagnosis and Val helped me come to terms with that, and with understanding that not everything can be perfect. She taught me ways to cope with things when they aren’t perfect, ways that are more desirable than getting angry and lashing out.

It’s really important to have these supports after you leave, because when you’re in hospital, you don’t get a taste of how your brain injury will impact everyday life. I’ve heard that a lot of this work is now done while patients are in hospital. For me, it was meeting with Val after I left that really helped me in finally accepting that this is a part of me. I feel it was a big factor in my school outcome.

I also worked with Sara Diederichs, a community resource teacher from the Bloorview School. She helped with my transition from high school to post-secondary school. At our high school there was a guidance counsellor, but it wasn’t the same. Sara understood the intricacies of dealing with someone with brain injury.

BLOOM: Were you able to finish high school with your peers?

Chantel Asamoah: Yes. My accident happened right after I wrote my Grade 10 exams and I went back to school the second week of classes in September.

BLOOM: How did you decide on going into pharmacy?

Chantel Asamoah: Pharmacy was a goal for me before my brain injury and I decided I wanted it to stay a goal. Because I had to give up on some things, like sports, I wanted to be able to maintain some part of what I was before.

I’ve always been interested in the sciences, biology and chemistry. I wanted to help people, but I didn’t necessarily think other healthcare positions jived with my personality. I also noticed that I liked educating people.

I was a tutor in high school and did a lot of mentorship programs with other students. Pharmacy is a good blend between having knowledge of the drugs and the biology and chemistry, and education. You’re taking that knowledge and applying it to patients—whether you’re solving their drug therapy needs or educating them about their medication or condition.

BLOOM: What has pharmacy school been like?

Chantel Asamoah: It’s been difficult for me, but rewarding. It’s been difficult because of the sheer amount of work and information I have to go through, and the number of courses. I’m finding it’s important to advocate for myself. I’m glad I got a lot of practice doing that in my last years of high school and first years of university.

BLOOM: What kind of work do you want to do when you graduate?

Chantel Asamoah: I really enjoy community pharmacy. I’ve been working in a pharmacy since my first year and what appeals to me is getting to build relationships with patients. When you work at a community pharmacy you see patients grow up. They come back and thank you for the recommendation you gave them last week. Even now, I have patients who come and remember my name or call and ask to speak with me.

BLOOM: It seems that you would bring special qualities to this work because of your health experiences.

Chantel Asamoah: In school, we don’t talk much about invisible disabilities or brain injuries. I think I have a certain understanding with patients who have an invisible condition. I know that even though things look normal on the outside, it doesn’t necessarily mean they are. It gives me extra perspective and an understanding that things may not be as they appear. It allows me to be more sensitive.

Some of my co-workers tell me ‘Chantel, you’re too patient with some people.’ I think I understand the importance of patience. I needed people to be patient with me. Patients will come back looking for me because they know I’ll go through all of their medications and answer all their questions.

BLOOM: What do you hope to do when you graduate?

Chantel Asamoah: My hope is I’ll get a full-time job in a community pharmacy. I also want to be involved in advocacy for invisible disabilities and disabilities in general. I’ve reached out to Dolly Menna-Dack with the youth advisory.

BLOOM: When you were in hospital here did you meet other youth with brain injuries, or hear from people who were further along with their journey?

Chantel Asamoah: I didn’t hear stories about how other people were affected, or how people were dealing with it successfully. It would have been nice to hear.

BLOOM: I remember that a few years ago we were able to connect a current inpatient with a former one and she said she found it so helpful to speak to someone who understood.

Chantel Asamoah: I think it would be very encouraging.

BLOOM: I understand you volunteered in our pharmacy before you went to pharmacy school?

Chantel Asamoah: Yes, it was my first exposure to pharmacy. I learned a lot about the accuracy that is needed, and it was a safe environment for me to learn how my disability might impact my work in the field. Everyone knew I was a past patient, and they understood more about invisible disability than the general public. They really focused on what goals I wanted to reach, and only expected me to do things that they knew I could do.

BLOOM: What advice would you give other youth earlier on in their rehab for brain injury?

Chantel Asamoah: What's important to be able to move on is acceptance. You have to accept that although the brain injury doesn't define who you are, it is a part of your life. It doesn't mean everything is now negative. Once you accept it's part of you, it allows your mind to think of ways to cope with things.

Advocacy is very important. Only you, yourself, know exactly what you need in terms of accommodations at school, or how you want your family members to treat you. That reflection on what it is that you need is important.

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Lisa Boivin paints stories about medical ethics beyond words

By Louise Kinross

Lisa Boivin is a member of the Deninu K'ue First Nation in the Northwest Territories. She paints image-based stories that explore the gap between medical and land-based, Dene ethics. She is a bioethics specialist and graduate student at the Rehabilitation Sciences Institute at U of T's Faculty of Medicine.

“Academics often want you to give an absolute, sweeping bioethical answer that fits into all circumstances, but there are certain land-based ethics that can’t be held in academic language,” she says. “So I translate them through painting. I situate my Dene experience and perspective in the paintings, and then I extract the story.”

Lisa is presenting the Town Hall session at the 12th Annual Bloorview Research Institute Symposium on Nov. 21. Her image above is called Holding Thunderbird.

BLOOM: Why did you study bioethics as an undergrad?

Lisa Boivin: I fell in love with the element of story—that ethics are held in the story of clinical narratives. As a bioethics student, we have all of this academic rhetoric around ethics. But I learned that the ethics are anchored in the story of the patient.

BLOOM: You mean that the most important ethics are found in a patient perspective?

Lisa Boivin: Yes. Clinical and personal hardship helped me to see ethics differently—things like informed consent. I had to read a lot of patient narratives to have a fundamental understanding of the sacred ceremony of informed consent.

BLOOM: What is the sacred ceremony of informed consent?

Lisa Boivin: It’s both parties coming together with complete understanding of one another’s situation, and a balance in decision-making. That’s something that’s hard to accomplish, for basic reasons. The patient isn’t a clinician, and doesn’t have the expertise that a doctor has in terms of the biology of what’s happening. But there’s also such a tremendous power imbalance between the two parties.

BLOOM: Can you describe your art?

Lisa Boivin: I came to know image-based storytelling through an inability to articulate academic thought from an Indigenous perspective. I’m not a classically-trained artist. I’ve only painted for three years. I’m a ‘60's scoop survivor from two generations of residential school survivors.

One of my professors asked me to write a paper on colonialism. I couldn’t do it. So I painted it. The paintings are born out of necessity, and are a way to communicate Indigenous perspectives to non-Indigenous colleagues. The one featured on the BRI symposium program is called Holding Thunderbird (see image above).

BLOOM: Can you describe what it means?

Lisa Boivin: From my teachings, Thunderbird is a very powerful being, the carrier of knowledge and the conduit between the creator and the people. Thunderbird is also the carrier of justice. With that responsibility comes great frustration.

I don't feel knowledgeable, I simply carry a knowledge that is unfolding in images I'm creating. I find myself frustrated often. Holding Thunderbird relates to me as a person who struggles in the academy.

BLOOM: In the academic world?

Lisa Boivin: Yes. The Thunderbird is me, and the woman holding Thunderbird is a professor. In the academy, I’m constantly expected to fit my Dene knowledge into a colonial format. That’s extremely oppressive and harmful to me.

BLOOM: Can you give an example?

Lisa Boivin: There are times when bioscience research clashes with Indigenous research methodologies.

BLOOM: And bioscience is always seen as supreme?

Lisa Boivin: Yes.

This painting was created to thank a professor who was helpful to me at a residency. The woman holding Thunderbird is the professor and all the flowers represent her knowledge. She’s keeping Thunderbird from flying away, and comforting Thunderbird.

She’s the first person that’s never asked me to change or do anything that would be harmful to the Indigenous knowledge in the images. That residency provided me with a healing, and a security I had never known.

For me, the painting represents the notion that we all have our own knowledge and our own knowledge systems. And for us to grow, we need support from people who have power in our lives. It can be a professor, a clinician, or a leader in our community. But the idea is someone holding space for us, as we are.

For this professor, I didn’t have to change or fit my knowledge into a colonial format. All I was expected to do was share my arts-based knowledge. I wasn’t sure if I was going to return to my academic program. And this was the reassurance I needed that I am knowledgeable, and that my knowledge has value.

BLOOM: This reminds me of how difficult it can be to talk about disability in a culture that doesn’t value it. It’s almost like I don’t have the words, sometimes, or I feel like I’m put on the defensive, in trying to convince people that there is value in a different way of living.

Lisa Boivin: This is the kind of damage that the medical model does to people with differences. What I’ve learned from my family is that an Indigenous perspective of wellness is much larger than the narrow perspective of the medical model. The medical model measures wellness as the absence of disease. From my Dene perspective, the measure of wellness is the ability to interact with the land.

My father had polio as an infant, and during his childhood he was seen as someone who was disabled. But when my father came home from residential school, he got on a dog sled. He became a champion dog racer and was no longer disabled. He didn’t consider himself disabled in any way. He just navigated the world differently.

I’m someone who has been diagnosed with a learning difference or cognitive disability. I have a different way of translating knowledge. I’m an image-based storyteller. There’s a reason I can’t interact with certain academic theories. The images came to life and were born out of necessity. If I could translate knowledge in an academic way, I would never have learned how to paint.

BLOOM: You said you only began painting three years ago?

Lisa Boivin: I had some artistic abilities as a child, but I stopped because I was bullied so much. I shrunk, and the art was gone.

I feel the beauty that is translated through my images comes from another place. It’s the ancestors coming through me. When I’m doing land-based activities, like anchoring bioethical theory or conceptions of wellness or rehabilitation in my painting, I’m no longer disabled. My mind is clear.

BLOOM: You spoke about your dad’s physical disability, and how through dog sledding, he was able. How do Indigenous people view intellectual disability or other types of disability?

Lisa Boivin: There are different Indigenous perspectives on disability and wellness. You’d have to take the time to research those. There is Navaho literature on autism and other intellectual disabilities.

Of course, any Indigenous person would want someone else to embrace a notion of wellness that will benefit them and their family.

Nothing would make me happier than if someone threw away the medical model that’s measuring who they are as a person.

Any Indigenous person would want people to embrace who they are, or to create their own idea of wellness. We have to snatch as much happiness as we can. My dad walked with a limp and had varying degrees of mobility, but that never affected his understanding of his wellness.

My wellness comes from an ability to interact with the land—to understand where I am in the world, and how I fit in and what my duties are. My duty is to be an image-based storyteller.

In the Navaho literature, they don’t present an idea of correcting behaviour. You are who you are, and you contribute where you can.

You move differently, you speak differently. The eight-year-old boy in me says: ‘You have a difference, you do different stuff.’

BLOOM: I love that. There’s no judgment in it.

Lisa Boivin: It really is that simple. Having a learning disability, my conception of disability in the past was that I was academically inferior. I had an inability to perform as well as other students.

An understanding of ‘doing different stuff’ has really helped me. In my graduate studies, I have come to know that my GPA is not an accurate measure of my knowledge. I don’t have great grades and my ideas are resisted constantly by my peers and many of my professors. But people seek me out to speak at their conferences and events.

In November, I'm keynoting The Ontario Psychiatric Outreach Program's conference and Woodsworth College's annual accessibility conference. I also did a centre talk and taught two arts-based workshops at St. Michael’s Hospital in the summer. That professional affirmation keeps me from giving in to the notion that I’m academically inferior to members of my cohort.

BLOOM: We did a narrative group for our inpatient nurses, and in addition to writing about their emotional experiences caring for children and families, they drew comics to help them see from different perspectives.

Lisa Boivin: In my arts-based workshop, I ask clinicians to create a visual narrative of themselves. Drawing yourself really expands the idea of practice. I ask them to draw who they are as an individual, how that influences their practice, what they want to contribute to their working community, and what they want to give to their patients. That’s a pretty big task to do in an hour! But it teaches people to be more reflective.

There’s something about drawing a piece of yourself where you have to capture a piece of your humanity. Within that humanity is vulnerability, but also an understanding of your responsibility as a clinician.

For me, I have my own image, and sometimes I have to go back to that image to remind myself to be better at what I do.

Being the frustrated Thunderbird that I am, there's a hawk feather in my self-portrait to remind me to speak gently and clearly. I also have a clipboard which represents consent. I’m always trying to build a place where clinicians can understand what consent it.

BLOOM: What do you hope to do in the future?

Lisa Boivin: I want to share information about Canada’s colonial history and how that creates clinical barriers between a clinician or therapist and a patient.

There are centuries of failed relationships between what would become Canadian institutions and Indigenous people. For hundreds of years, there’s broken promises, institutional racism and mistrust. And this still takes place in medicine today. I am horrified when I read stories in the media about Indigenous patients who die in ERs because they're seen as drunk or drug-seeking. When an Indigenous patient sees that in a media story, it influences how they interact with a doctor.

Medicine has also been used as an instrument to remove Indigenous children from their homes, because it's perceived that Indigenous parents can't look after their children. This was certainly the case for my father, who had over a dozen surgeries to correct his mobility impairment.

I’d like to promote an understanding of a wider notion of wellness. As we spoke of earlier, the medical model is very simplistic. It’s the presence or absence of disease. There are wider models of wellness.

For many Indigenous people, the ability to interact with the land is a measure of wellness. An Indigenous worldview includes the land, animals, community and nature. An ability to contribute to community is central to wellness, and that can be any contribution.

I’m a health-care educator and I will continue using arts-based practice to educate about colonialism and how that exists in medicine.

BLOOM: I think your ideas could be helpful to any patient, including non-Indigenous patients.

Lisa Boivin: Imposing a medical model—one standard or one measurement—on any group of people is really harmful.

For my first two years as an undergraduate student, I struggled. It wasn’t until I was able to understand certain concepts and put them into images that I was able to thrive.

Learn more about Lisa’s experience and insights in her Ted Talk: Painting the Path of Indigenous Resilience. In this video, she describes the image Sharing Bioethics below as the overlap between a traditional Dene circle of medicine and an academic circle of medicine. "We all hold circles of medicine," she says. The photo below is by Erin Howe at the University of Toronto.

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Students run concussion rehab program for youth

By Louise Kinross

There’s little science to show how to best help youth with concussions who continue to be bothered by headaches, fatigue and dizziness.

A new research study at Holland Bloorview is testing the impact of a six-week program of education, low-intensity exercise and relaxation on 200 youth aged 10 to 18 who have concussions, most of them sport-related.

“We want to know if this active rehab approach works for kids with concussions, and, if it does, at what time points after the injury,” says co-investigator Anne Hunt.

The study design is innovative because it’s carried out by students who are clinicians in training. This includes students in their final year of occupational and physical therapy and kinesiology.

The youth with concussions first come in for a series of brain and body fitness tests. “Based on this, we prescribe an individual exercise program that has an aerobic component, like walking or riding a stationary bike, as well as up to 10 minutes of sports-specific coordination drills, and five minutes of relaxation through deep breathing or visualization,” Anne says. “We go through our Concussion and You handbook, which covers things like how to conserve energy, good sleep hygiene and tips for returning to school.”

Over the next six weeks, the youth carry out the exercise program at home and call or visit the students running the program for support. At three and six weeks they come in to have their fitness levels and health reassessed.

“Families tell us that health providers or coaches encourage the kids to push through their symptoms, or to work at a higher intensity than we do,” Anne says. “This can make their symptoms worse or slow their recovery. We teach them what it means to work at a low to moderate intensity. Ours is a very careful, methodical program. Some kids may only be able to start at two minutes of aerobics when they first come in.”

Having students run the program has many benefits. “We tell the clients participating that they’re not just helping us learn about concussion, that they’re training these students,” Anne says. “The kids tell us they love working with the students, who are younger, whereas I’m sort of more of a mother figure. All of the students come in with a wealth of experience. For one client they may need to develop sport coordination drills for volleyball, whereas another client needs dance or lacrosse drills. The students work together, given their different professional roles, to divvy up the assessments and scope of practice.”

Andi McHugh, a physiotherapy placement student, says she’s gained confidence “because we’ve been given a lot of autonomy. In other placements, you’re working more closely with your supervisor. Here, it’s more self-directed learning but with peers you can bounce ideas off.”

Tesca Andrew-Wasylik, who just finished a five-week placement in the concussion program, agrees. “Being part of a student-run clinic is such a unique experience. I've enjoyed the challenge of being presented with a problem and finding a way to solve it independently, while still knowing I’m being supported by my supervisors. I think it’s very successful in preparing students for the real world and reinforcing autonomous learning. I’ve learned so much about collaborative practice and family-centred care, as well as learning from the families and kids that I worked with.”

Tesca graduates this year as a physiotherapist. She's shown working with Emma, 10, in the photo above.

The research is funded by Scotiabank, and is cost-efficient because it’s implemented by students rather than staff.

Study results are expected in two years and the researchers hope they will inform best-practice guidelines on rehab for youth with concussion.

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'Passport' helps parents plan move from hospital to home

By Louise Kinross

A parent who spent 16 months at her daughter’s bedside at Holland Bloorview has given a gift to other parents of inpatients.

The Transition Passport is a binder that helps parents organize their child’s health information and plan for the extensive equipment and supports they may need to move back home.

The idea came from Sadia Qureshi, whose daughter Zoya had been a healthy six-year-old until she woke one morning seizing. After two months in acute-care, where she continued to seize and was intubated, she came to Holland Bloorview.

“We had no idea where we would go from here, that there would be life after Holland Bloorview,” Sadia says.

The passport organizes what parents need into sections: checklists of equipment and medication; funding sources and school planning; a place to record important dates, keep therapy schedules and take team meeting notes; and a holder for business cards for key staff who work with your child.

“As a parent who had never been through this, I didn’t know what equipment we would need at home, or even that funding was available,” Sadia says. “I didn’t know that schooling for Zoya would be a choice. I didn’t know it was possible to live in your home with support. The passport has checklists you can go through with your physiotherapist or nurse or social worker to help you plan according to your child’s needs.”

The process of moving home with Zoya was “very difficult, long and not easy,” Sadia says. She often didn’t realize that she needed certain things until she took Zoya home for short trial stays. “It’s hard to know what to expect. The passport will help parents pre-plan, so it won’t be as stressful or take as long.”

Sadia worked with a discharge steering committee at Holland Bloorview to bring the binder to life.

“Being part of this group was a wonderful experience,” she says. “I shared everything—what was great about our transition experience, what we need to work on, and what I think will be most appropriate for parents.”

Anna Marie Batelaan, social worker on the brain injury rehab team, says families “are finding it extremely useful as a way to keep organized and keep all of their documents from acute care and here in one place. For a lot of them the health care system is new and foreign. Many families come in with a shopping bag full of reports and they have trouble laying their fingers on what they want to show you. This binder gives them a framework for keeping it all in one place. They keep reports, home programs and medication lists in there. It’s one location where you can put everything. I have families who have moved home who continue to use it as outpatients, so they don’t have to keep track of everything in their own head.”

The Transition Passport team received the Sheila Jarvis Impact on Client and Family Centred Care Award for 2016. You can download your own copy or ask your social worker for one.

“Our goal is that this will assist families in partnership with their clinical team—not just with organizing information, but with helping them prepare for meetings and ask the questions that are important to them,” says Elaine Widgett, interim senior director of inpatient rehabilitation.

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Hardships, silver linings and me: A diary of rehab

By Alivia Osland

I’ve been in the hospital for almost three months because I’ve been diagnosed with Guillain Barré Syndrome.

The lower half of my body was paralyzed (my whole body could have been paralyzed, so I’m considered lucky). I had problems with my breathing and swallowing and what wasn’t paralyzed was numb and tingly and extremely weak. I also had an ongoing headache for the first month.

At the beginning of this journey I was miserable and hurting—mentally and physically—and dazed by just how surreal this really was. 

After a few weeks of a little progress, things went downhill. My breathing was affected. At that point I was throwing up quite frequently and they thought I was aspirating some of the vomit. Then my oxygen levels went down to 30 per cent (they’re supposed to always be above 90 per cent) and the doctors thought it would be best if I went to the pediatric intensive care unit.

Once I got into the PICU everything was a blur. Shelly—my nurse—said she was giving me a nasal feeding tube right away. That crushed me. For a couple of weeks, doctors had said it was a possibility, but I never thought it would actually happen. So the feeding tube went in and the oxygen prongs were next. Other than the feeding tube, the oxygen prongs were the hardest to get used to. I didn’t think they were helping me. It felt like it was harder to breathe than before. I despised them.

The first three or four days in the PICU were the worst. I was throwing up what felt like every five seconds and it took hours to get my breath back. My throat felt incredibly raw because of the constant throwing up, the feeding tube and the continuous high-flowing oxygen going through it.

That was when I wanted to go home the most. I was getting an artery line, I couldn’t eat or drink on my own, I couldn’t breathe on my own, I couldn’t go to the bathroom on my own (I HATED the bedpan) and I couldn’t move my legs at all.

It was nuts that I was actually immobile and couldn’t do anything. I didn’t know if it was going to get worse than it already was. Would I need a catheter? A respirator? Would it get that bad?

Initially I would wake up and forget about everything, for a minute. Then when I remembered, my mood just fell and it was awful. Eventually I got used to it and didn’t forget anymore.

It felt like it would never get better, but it did. They took the artery line out and I was in a bicycle study. What is a bicycle study, you might ask? It’s a study where they bring a specialized bike to the end of your bed and they strap your legs in, extremely safely. Then the bike would start moving on its own with the choice of higher speed or higher resistance (if you were peddling).

The idea behind the study was that if you got some exercise while you were sick, you could recover and get stronger faster. I think it worked.

I was only in the PICU for 10 days and then I was back on the unit. I left the oxygen prongs behind and felt a lot better.

Soon after I got comfortable in my new room, my occupational therapist Kate came into my room to do some feeding tests. Purees went well but liquids not so much. I coughed quite a bit on the milk and I was really disappointed. I had my appetite and thirst back, but was still unable to please my cravings.

Next I went to the therapy room to try standing, after countless sessions of sitting at the side of the bed. I was (figuratively) jumping for joy! I got wheeled up to the parallel bars and had Jill (physiotherapist) on my right, Kate on my left and Barb (physiotherapist) in front of me. We were going for it! With both my hands on the armrests of my wheelchair I pushed myself up. I was standing for the first time in weeks! I was extremely proud of myself.

We did that for the next few days and it was getting a lot easier. I wanted to try walking. Jill and Barb thought it was a good idea so we gave it a shot. I stood up, steadied myself and then took a step and then another and then another. I was walking! Holy moly, I was actually walking. I sat back down filled with optimism for the next few weeks.

As time progressed, so did I. Now I could walk from one side of the room to the other and I could also do a transfer from my wheelchair to my bed with a walker. No one could believe the progress I was making (not even me). Things were looking up! I thought I must be going home soon. But I thought wrong.

One morning Jill came into my room for physiotherapy and I asked her what I would have to do in order to go home. That’s when she brought up Holland Bloorview in Toronto. I was confused. I thought I’ve come a long way, why would I have to go to another hospital? She went on about how at Bloorview they’re more focused on rehab than acute care. I was understanding more now, but how much longer would I be hospitalized?

Jill told me it could vary between three weeks and two months. Seriously? Another two months? I held in my tears as best as I could. Then my dad came in with my speech language pathologist Sara and Jill filled them in on our conversation. They all looked at me with pitiful looks and I couldn’t hold it in anymore. The tears streamed down my face. I couldn’t control them. I just wanted to go home. I couldn’t handle another two months. But soon enough it was moving day.

On August 23, an ambulance took me to Holland Bloorview. I have to admit, it was pretty cool riding in an ambulance. It didn’t take long and soon we were there. Holland Bloorview was very different from McMaster Children's Hospital, like wow!

At Bloorview you have a schedule for the week. There’s a Bloorview school, a lounge where everyone eats, and you can go home for weekends. There are family team meetings where you, your family, your social worker and your team of therapists all have a meeting and discuss your goals and progress. During your first team meeting (seven to 10 days after your arrival) they will give you an estimated discharge date.

My first day was busy, busy, busy. I met loads of new people. It was a little overwhelming, to be frank. I met all my therapists, my social worker and my head nurse. I was exhausted and in desperate need of a nap by the end of it.

During the next few weeks, I was progressing like crazy. I came to Bloorview being able to stand on my own for 20 seconds, tops, and now I was using a walker to get around. This was so exciting!

My physiotherapist Alanna was working me really hard! Which was great! Soon she was leaving to get married so I was getting a new physiotherapist for the time being. I wanted to surprise Alanna when she came back, maybe even being able to walk without any equipment? Hopefully.

When school started I was alone most of the time because my parents had commitments they needed to fulfill. The nurses kept bugging me about eating in the lounge or going to recreational therapy. I really didn’t want to. Socializing wasn’t my strong suit and I was incredibly shy. They repeatedly said that socializing is therapy too, but I was socializing with the nurses and my family. So eventually they got off my back.

Speaking of school, I’m in a Grade 6 to 8 class and my teacher’s name is Anne-Marie and the educational assistant is Judy. 

When I first started, I hated it, to be completely honest.

My first thought was: “How could school get any worse? Have it in a hospital!” I wanted to go to MY school, where all my friends were. But I sucked it up and it wasn’t all that bad. Anne-Marie and Judy were awesome and I pretty much did my own thing most of the time. It was going pretty well!

With my new physiotherapist Andrea we were doing all sorts of crazy things like jumping, running and walking along a balance beam while squatting and reaching. It was nuts! I really enjoyed it and I was getting pretty good at it too!

We also went on daily walks with activator poles. Walking with the poles was getting a lot easier, so Andrea did the six-minute walk test on me. The test determines whether you need a walker anymore by testing if you can walk 500 metres in six minutes. I went 523 metres!

The next day I was independently walking around the hospital. I could LITERALLY jump for joy now and you bet I did!

Alanna was back and boy was she happy! I gave her an update on everything I could do. I could stand on one leg for a minute, I could jump, I could run and so much more! She was blown away! That day I climbed four flights of stairs, jumped rope, and did 'suicides' and basketball drills all while running! I was having a great day! I could run, I was feeling optimistic about discharge and they were weaning me off my pain medication. I was starting to see the light at the end of the tunnel.

Today was the day of my family team meeting and I was really hoping I'd be able to go home sooner than anticipated. I crossed my fingers. Once we were all in the meeting room (Alanna, Sarah—occupational therapist, Patrick—my social worker, Katherine—my child life specialist, Anne-Marie and my family), Patrick told us that my school was on the telephone line and so was the outpatient therapy clinic I would be attending at Kids Ability.

The meeting started off with how I’m doing medically (which was fantastic), then we began to discuss my physical capability. Alanna said I was doing awesome and that there were still some minor things to work on but overall I was doing great. Next, Sarah said that my strength is definitely coming back and that I won’t need any outpatient occupational therapy (yay!).

Then we got onto the topic of how I was coping with my hospitalization. Everyone said I was coping fantastically. I tried really hard to focus on the positives, so I’m glad it was noticed.

Soon after, my vice principal mentioned some strings they could pull to make the transition back to school easier for me. Things like having a buddy walk with me to class and carry my books, leaving class early so the hallway isn’t so busy, having a chromebook if writing was too tiring and being able to have a rest if needed.

I didn’t think all that was really necessary, and neither did Alanna or Sarah. So we ended up just going with the buddy, as a precaution. Finally, we came to the discharge aspect of the meeting. Drumroll please… I’m going home a week early!

Out of nowhere the waterworks came gushing out. They were out of control. It just dawned on me that I was going home NEXT week.

That’s so soon. I just started connecting with some of the people here, like my roommate and other clients. I just got comfortable with eating at the lounge, going to recreational therapy and socializing. But now I’m leaving.

Two days before my discharge date I realized that I didn’t really want to leave. I was used to everything here at Bloorview and I didn’t want to have to deal with such a drastic change all over again. Plus, I made friends that I may never see again and it’s hard to be okay with that. I’m hoping we stay connected even though we’re so far away.

But I need to remember that leaving is good. It means I got through the most difficult thing I’ve ever had to deal with and I’m proud of myself. I also can’t forget about my friends back home, I honestly cannot wait to see them.

This journey sure has been difficult, but there are positives. I’ve made friends I would have never gotten the chance to meet otherwise and I’m coming out of it with a whole new perspective on life. I’m so much more thankful for the little things now. 

To other kids going through something similar, I would say keep your head up and focus on the positives! That’s what saved me from falling into a pit of sadness. Sure, I was sad, but it could have been worse. It may seem like it doesn’t ever get better, but it does. It always does. It can really suck, but when you’re better you feel like SUPERWOMAN. Just about walking or running semi-fast or maybe even pushing yourself in the wheelchair. Try not to let it get you completely down because there really are some positives about the whole situation. I made friends that I still talk to everyday and the nurses can be GREAT. They’re just great people. So find the positives in a really big negative. 

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When medicine doesn't go according to plan

'In the first couple of months of being at Bloorview I really had hope…that I would get my life back…As I was there longer I started to realize that the changes in my body aren’t easily fixable.' Maddy Workman, above right, studying chemistry in the Bloorview School.

By Louise Kinross

Maddy Workman, 16, has spent five months at Holland Bloorview after a hip surgery that wasn't successful. She’s since had a second surgery and will have a third in the New Year. In Life is a Climb she writes about having to come to terms with pain and muscle spasms that make it hard for her to do the things she used to do.

“Before the hip surgery I was a regular teenager who needed a wheelchair to get around, but I didn’t need a bunch of help,” Maddy says. “I had really good control in my right arm. I could draw, I could paint. And I loved to bake.” Her favourite concoction? Macaroons. 

Maddy has a penchant for purple and pink. Her wheelchair is purple, her iPad cover pink, and her clothes a mix.

Maddy now copes with uncontrolled movements in her right arm that make it difficult to do everyday things. “The more I try to do something with my arm, the more my body resists it,” she says. “The doctor said the pain in my hip is causing spasms in my arm. If I want to do something as simple as brush my teeth, my arm doesn’t want to do it.”

Accepting these changes, and trying out adaptive equipment for cooking and other activities, has been tough, Maddy says.

“For me, I need to talk it out verbally when I’m frustrated,” Maddy says. At Holland Bloorview that’s often been with social worker Val Lusted. “She’s really good. She says I go through stages of frustration and sadness, but then I come out on the other side.”

Maddy advises other kids in rehab to accept their emotions. “When you’re sad or frustrated or angry you’re allowed to be like that. But don’t stay in that place forever. When I found out the news that I needed a third surgery on my hip, I asked ‘why did this happen to me?’ I was not happy—for Friday, Saturday, Sunday, and a little bit of Monday. But then I got better.”

This weekend Maddy returns home to Ariss, Ont. where she's in Grade 11. In January she'll be back for another surgery. “I can’t wait to get back to my school and family,” she says. Read her poem below.

Life is a Climb
By Maddy Workman

In the first couple of months of being at Bloorview I had hope for the first time in a while,

Hope that I would get my life back.

I had hope that I would be a regular teenage girl again who just needed a wheelchair to get around.

As I was there longer and longer I started to realize that the changes in my body aren't easily fixable and that I have to figure out how to deal with the changes.

Change is very hard for me, and I never really had a huge change in my life.

Change is hard physically,

Change is hard emotionally,

Change is just hard to deal with.

But, if I want to be happy I have to deal with the changes and get though them, because life's a climb.

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How ideas about 'normal' speech silence children

By Louise Kinross

I read a fascinating story in Holland Bloorview scientist Barbara Gibson’s new book that looks at how cultural notions of what’s "normal" influence what we value in rehab.

The book is called Rehabilitation: A Post-Critical Approach.

The story was about a high school student whose most efficient way of communicating was to speak in a way that wasn’t intelligible by others—but which her mother could easily translate. The student was able to use a voice-generating device, but said it was slow, cumbersome and tiring. She only used it at school where no one understood her speech.

Which way of “speaking” is better? Using the voice device would give the student a higher score on a rehab test of “independent communication,” but the student said speaking with the support of her mother is much easier and faster. 

I reached out to Barbara and learned that this story was contributed by Gail Teachman, who worked for over 20 years as an occupational therapist at Holland Bloorview. She just completed her PhD in philosophy at the University of Toronto’s Rehabilitation Science Institute. Gail co-wrote one of the chapters in Barbara’s book.

Gail’s doctoral research involved interviewing 13 high school students who used alternative and augmentative communication (AAC) about what inclusion means to them. The term AAC is used broadly, to include voice devices, gestures, pictures, utterances and other ways of expression. Gail encouraged participants to communicate in their preferred modes and in any way they felt most comfortable.

“A lot started off wanting to impress me and show what a 'good' communicator they are using technology,” Gail said. “But once they relaxed into the interview, they more often relied on a family member as a communication partner and I was able to see how they more typically communicate.”

All chose to have a mother or sibling participate so that they could use speech or gestures, which their family member translated, to save energy.

“Even as a seasoned AAC clinician, I understood very little of their speech. This is not speech most people would understand at first. It was like having a door opened to a room that I had never been in because the person felt comfortable and the family understood just about everything the youth said. It was a privilege for me to see that these families have learned to understand their child’s communication in ways that are different but no less valuable. It was so rich and so moving.”

At the same time, Gail said, the teens and young adults noted that they can’t converse this way in public because “it’s devalued there.”

Ironically, many of these youth, who are labelled “non-speaking,” speak all the time at home, Gail said.

“One of the things I looked at in my research was why we put so much emphasis on what we call ‘independent communication.’ We could do so much more in our work to advocate for communicative competency as being a shared concept. That it’s not about changing the way ‘they’ communicate, but to turn it on ourselves and consider how socially we’re stuck in thinking there’s only one way to communicate: that approximating oral speech is the best way. Instead, we might consider our own ability to converse with people who talk in different ways.”

Gail said some great work is being done about communication as a shared concept at Communication Disabilities Access Canada. 

Typically, Gail said, people who use different ways of communicating have been excluded from participating in research. “It’s thought that they wouldn’t be able to respond to questions, or that their responses wouldn’t be valid. My research used the work of sociologists and linguists to argue that if a person is communicating—whether it’s with a device or facial expression or dysarthric speech or with a communication partner who understands them—their talk is no less valuable or true.”

Her research also found that using a voice device is devalued in society at large.

“I found that even when a person became quite competent at using a device, it didn’t mean that when they went to the mall they felt included. Participants told me: “People don’t stop, they don’t wait, and they don’t value what I have to say.” The technology itself can be intimidating and discourage interaction, Gail said. 

One young man who joined a wheelchair hockey league talked about how no matter how much training the coaches had, they talked to him like he was a little kid. He felt that because he used a voice device, they assumed that he wasn't very smart.

The youth in Gail’s study preferred to go places with a parent or support worker because it “helps them feel safe and able to interact in a world that is constructed for people who use clear oral speech. But that’s termed ‘dependency’ and is too often considered lacking in some way.”

She stressed how much we inadvertently limit youth when we overemphasize the value of independent speech. 

“It may take five minutes for someone to make a sentence on a device and that’s exhausting,” Gail said. “Without question, technology can improve the lives of children with communication impairments. But with certain questions they could turn to a communication partner and basically say ‘Can you take this one for me?’—and because of their shared history, the partner can help them get their message across more easily. As long as we hold up independent speech as the best way to communicate, we only allow ourselves to see a part of what that young person wants to share.”

Stay tuned for more on what high school students in Gail’s research said about inclusion. 

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