'If it's part of me, I learn to love it'

Here's our full interview with Emily!

Emily Chan, 16 (above), has a rare neuromuscular condition that creates general weakness and serious breathing problems. She uses a ventilator and a power wheelchair. At six months, when she was in an acute-care hospital, her parents were given the option of stopping medical treatment.

“They told me I have a choice,” says Peggy Chan. “That I don’t need to keep her. The doctor said they had families who choose to give up their baby because they won’t have any quality of life. I was very mad and I said: ‘Are you crazy? As a mom, you’re not even giving me a chance to try to raise her?’ If I had given her up I would have regretted that decision for the rest of my life.”

Emily lived for six years at Holland Bloorview before her medical condition improved and she was able to move home with her parents. Emily says she likes “all the typical teenager stuff” and wants to go to university to become a child psychologist.

BLOOM: How do you define quality of life?

Emily Chan: It’s living each day to the fullest, being happy. I think everyone deserves to have that chance. The purpose of life is to be happy, to be happy with yourself and what you’ve done and hopefully make a difference somewhere.

BLOOM: What is your life like now?

Emily Chan: I have a great life. I have everything—family, friends, cute guys to look at. Everything is going great in my life. I have pretty good marks at school—an 82 per cent average. I like Facebook and I’m really into (Korean)-pop. I play the guitar and piano and really love doing that. Whenever there’s stress in my life I pick up my guitar and play my worries away. It’s a great stress reliever. I like talking, hanging around, going shopping, going to see movies—all the typical teenager stuff. I love Harry Potter.

BLOOM: What about reading. Do you like those teen romances?

Emily Chan: No, that’s so cliché. I like the deeper, darker stuff. I’m just finishing The Hunger Games.

BLOOM: What are your dreams for the future?

Emily Chan: I want to become a child psychologist. I also want to have a family and drive a Ferrari—don’t we all? But right now I just want to get to university. Living in a hospital for the first six years of my life has given me a broader perspective of things. I got to interact with adults more than the average kid, which made me mature faster. It’s like my brain is 20 when I’m 16. I’ve known a lot of people who had to go through really difficult situations and I’m less quick to judge. I know that even though a person may appear a certain way it’s because of something that’s happened to them in the past. You have to see the person, not just the person they appear to be or how they act. I understand the feeling of being isolated, which will help me understand someone who feels alone for different reasons.

BLOOM: How do you view disability?

Emily Chan: It’s just a part of you. God made you this way for a reason and you have to learn to love yourself. You have to realize that a disability isn’t going to hold you back. My mom always told me that it doesn’t matter how you do something as long as you get it done. If you have a wheelchair it just becomes another part of you. And sometimes you can use it to your advantage—like running over people you hate!

BLOOM: Some kids resist what makes them different.

Emily Chan: You need to embrace it, because you can’t change it. If you want to live a good life you have to be happy and being happy means loving yourself. You do it for the sake of you and your happiness. Everyone has flaws, no one’s perfect. For me it’s my equipment. But I learn to look past it.

BLOOM: How do you see your equipment?

Emily Chan: It’s a part of me, so I learn to love it. If someone rejects my equipment they’re rejecting me because it’s grown on me. If they ask ‘Why do you use that?’ they’re kind of insulting me. I help my mom when she changes my trache and if I need to suction, I’ll do it myself. It makes me feel like I have more control in my life.

BLOOM: What is it like for you to be in a regular high school?

Emily Chan: I feel I’m really lucky because I go to an arts school and there’s a lot of diversity there. They have so many different kinds of people that the students are more accepting. If I went to any other school I think I would be more outstanding, more prominent. Here I’m just part of the diversity.

BLOOM: Did you ever have trouble with other kids at school?

Emily Chan: When I went to my home school for Grade 2, I was the only one in a wheelchair and it was hard. They were always teasing me. For group projects no one wanted to partner with me. These kids had been together since kindergarten and were close knit.

BLOOM: How do you think they viewed your disability?

Emily Chan: Like it was going to hold me back: ‘She’s not normal, she doesn’t fit in with the rest of us, she’s an outcast, she can’t do anything.’

It doesn’t happen much now, but there was a group of girls taunting me at school. When I went past them one said ‘Oh, you almost ran over my foot’ when I was no where near them. I said ‘No, but would you like me to?’ I like to use humour to turn the joke back on people.

BLOOM: Is there advice you’d give kids who struggle to make friends?

Emily Chan: I tried to approach kids and be friends with them but it didn’t work out that great. I did become close to one girl and she stuck by my side. In Grade 7 and 8, I found myself developing a skill of not letting people take advantage of me. I can stand up to people and fight back, instead of being tread upon. Something that helped was there was a class where students with physical disabilities could go at recess or lunch and I became very close to those people. They were friends I could talk to and fall back on, and I think that kept me going. I learned not to let things get to me. To look past a hurtful word and feel sorry for that person because they have to bully someone just to boost their self-esteem.

BLOOM: What advice would you give parents of children with disabilities?

Emily Chan: Don’t give up on your kid—no matter how grim the situation might seem. Always stay positive. You have to put in the time and the effort. Kids need their parents to give them love and support. Nurses and doctors will have sympathy, but it’s not the same as a mother’s hug that gives you that warm feeling. Every kid needs that. What got me out of Holland Bloorview was the constant pushing and love and support of my parents. They got me the treatment and the help I needed to thrive. My mom had a drive to bring out my potential and I think every parent should have that. In my opinion, many parents don’t have that devotion anymore.

BLOOM: Is the condition you have usually progressive?

Emily Chan: I’ve done some research about it and read stuff online about boys who have the diagnosis. It’s rare for a girl to have it. For the boys it’s a progressive condition and it keeps getting worse and worse. I’m really healthy now and I don’t have issues with pain. I think part of it is living at home and not being in a depressing hospital. I have more room to grow and expand on new things and explore what’s out there.