Family silence around disability complicates brothers' bond

By Louise Kinross

It's hard to think of Terrence Ho (above left) without thinking of Torrance Ho (above right), his younger brother. They had an exceptional bond. Torrance was a Toronto artist with a love of Japanese anime characters. He had Duchenne muscular dystrophy, a degenerative condition that causes muscle weakness, and died in October at the age of 37. BLOOM spoke to Terrence, one of his primary caregivers, about their relationship.

BLOOM: Tell us a bit about Torrance.

Terrence Ho: We're four years apart. I don't have early memories of him, but looking at the photos, we were always tight as brothers. We were both born in Hong Kong, and he was born a year and a half before we immigrated to Canada. Our mom's family included two brothers with Duchenne who died in their 20s. But in our family, that was never talked about.

Torrance was always a very quiet, gentle and kind person. We got along super well and did a lot of stuff together. He started showing symptoms of Duchenne, like stumbling, when he was about four or five. He got the diagnosis a year or two later.

Even when these things were happening, he always found a way around them. I remember our homes had stairs but instead of walking, Torrance would sit down and bump down the stairs. I still remember in Grade 1, even though he was stumbling, he tried out for track. I remember vividly being at the school and watching Torrance run for the last time.

When he was young he was into plush animals. They had this cuteness factor. He had a little hippo plush and an owl plush. On a trip back to Hong Kong to visit family, one of our cousins gifted Torrance a plush of the character Totoro, and a VHS tape of the film My Neighbour Totoro. He watched it and fell in love with this character. Totoro was always smiling, took things easy, and went with the flow, which reminded Torrance of himself. 

Torrance is a creative. He's a visual artist. He had a sketch book from the age of 11 and he would sketch Totoro. Because he also loved comic book characters, he would do mash-ups, like Totoro Spiderman.

BLOOM: What was challenging about having a brother with disabilities?

Terrence Ho: For me, it's feeling like I'm not seen and heard by my parents. My mom was a single mom. Growing up, she was caring for Torrance and didn't have the time or energy for me. That would be my biggest challenge as a sibling.

I think a coping mechanism I took on was the role of caregiver, because that was the only way I was seen by my mom. As a teen I was like an adult helping my mom. Therapists have told me that I became parentified. 

Even relatives and family friends would say as the oldest son you need to take care of your brother and mother. 

There were a lot of moments of frustration and anger, and wondering why I need to take on this role. And then not talking about it with my friends. I felt like none of my friends had the same experience, so I kept it to myself. 

BLOOM: Was Torrance followed at Holland Bloorview?

Terrence Ho: He was. Dr. Biggar was Torrance's primary doctor for muscular dystrophy. He was amazing for Torrance and amazing for our family. 

BLOOM: Did you ever participate in sibling support programs?

Terrence Ho: I don't think there were programs then. Recognizing I was struggling, my mom put me in touch with a social worker at Bloorview. For a few sessions, when she brought Torrance for his appointments, she made sure I spoke with the social worker. But I didn't find it useful back then because I didn't know how to express myself.

Everything was bottled up in our family and I modelled that. Everyone had masks on, to protect their emotions.  

I didn't find out about sibling programs until I was in my 30s. I joined the Sibling Collaborative, which is now called Siblings Canada. I mainly used their Facebook group as a way to read what other siblings are doing, and to ask questions. It was valuable to see that other siblings were thinking about the same stuff: What happens when our parents die? How do I make sure my sibling is taken care of? What about the finances? 

Growing up, none of my friends had siblings that they took care of, and I felt very alone in this experience. Being part of the siblings group gave me the sense of 'Okay, I'm not the only one.'

Before I found the sibling group, I joined a men's support group. That gave me a safe space to be with other men and share my emotions and even cry. It helped me get in touch with how I was feeling, and I learned to be authentic, which I hadn't seen modelled at home.

BLOOM: Would you recommend siblings connect with peers?

Terrence Ho: I think it's helpful. But even before that, I think parents can play a big part in supporting the sibling. It may be a lot to ask, especially in a situation like my mom's, where she was a full-time, working single mom.

But depending on the parents' situation, having conversations with the other siblings about what's happening is so important. I'd see our whole family in stress or chaos, and I didn't know what to do and I felt helpless. But we didn't talk about it.

I think there can be many layers of why parents don't talk to siblings. I don't know if it's cultural? But it's not just the Chinese culture. The disability itself is stigmatized. There's shame and guilt in saying 'I have a child with a disability.' 

I can remember visiting relatives in Hong Kong and some of my cousins, aunts and uncles knew about Torrance's disability, but they knew not to talk about it with the rest of the family. It upset me, and I said 'But this is Torrance, this is who he is, so why can't we share?'

BLOOM: Did you go with Torrance to all his appointments?

Terrence Ho: When I was younger I would tag along but I wasn't involved. In the last 15 to 20 years I took a more hands-on role. When I was in university we got an accessible van and I would drive Torrance to his appointments.

Torrance had a power wheelchair and was a big power wheelchair hockey player, so I made sure I knew when his games were and when available I'd take him and watch. Playing hockey gave Torrance a lot of joy. It was the first time he had a sense of community. He was friends with the other players, and it gave him a sense of purpose.

BLOOM: How did you fit in all those medical visits and games when studying or working?

Terrence Ho: I just figured it out in university. I've been fortunate with employers. I'm vocal about my role as a sibling caregiver, and most have been open to my supporting my brother when needed. For the last 10 years I've worked in the assistive technology and wheelchair space, and all of the teams I've worked with are empathetic and caring, as long as I get the work done.

BLOOM: How did Torrance create art as an adult?

Terrence Ho: With a single click of a buddy button in his left hand, he could control a drawing program on his iPad. Torrance created hundreds of different characters. Each drawing took from three hours to three days to produce. In 2018 he created a YouTube channel called My Neighbour Totorrance where he would draw and showcase his art. He had over 90,000 followers on TikTok.

His dream was to create merchandise with his artwork on it. We were working on that together this year. That's something I'm going to work on to honour him. I hope to launch something on his birthday in May.

BLOOM: What were the greatest joys of being Torrance's brother?

Terrence Ho: There are so many. We had similar interests. We both loved sports. He played power wheelchair hockey as a goalie for over 12 years, and represented Toronto and Canada internationally. 

We used to regularly go watch Blue Jays games and hockey games.

My fondest memories are of a road trip our family took together. I rented an accessible van and we drove all the way down to Fort Lauderdale, took a Disney cruise and visited Disney World and Universal Studios. Along the way we stopped at any city that had a baseball team and watched a game. Sharing our love of baseball together and experiencing different stadiums is a great memory.

Torrance was a big movie buff and we'd regularly go out and watch movies. We also saw musicals and concerts. Torrance was a big fan of Celine Dion, Michael Bublé, Tony Bennett and Andrea Bocelli, and got to see them in concert.

In his last few years, because of adaptive gaming technology, we were able to play our favourite childhood video games together like Super Mario Kart.

BLOOM: You said Torrance's medical care deteriorated as an adult. 

Terrence Ho: When Torrance became an adult he was seen at WestPark, but there weren't any muscular dystrophy specialists there. Doctors told me they didn't have much understanding of Duchenne, because there weren't many adults in their 30s with Duchenne. No one told us what to expect, and we didn't have a team to walk us through things anymore. 

Torrance had a big health crisis from 2016 to 2018. He was in the ICU twice and almost died. He had developed anxiety about breathing, had panic attacks and suicidal ideation. At that time he only wore a BiPap mask at night. He kept saying 'I feel like I can't breathe,' but no one took it seriously.

It took me two years of heavy advocating to find a solution for him. He had started the process of medical assistance in dying. He said he wasn't afraid of dying but he was afraid of not being able to breathe and suffering. 

I remember sitting in the car in the parking lot crying to the respiratory doctor, and saying 'You have to give me some options for Torrance, because he's on his deathbed.' I'd been talking to this doctor for two years. Finally he said 'Okay, there are two options. He can either get a tracheostomy put in, or he could wear his BiPap mask 24-7.' Torrance chose the BiPap, and he recovered.

BLOOM: Why hadn't he suggested wearing the continuous BiPap before?

Torrance Ho: No idea. I was so frustrated. The recommendation had been that he only wear it at night. I don't think the respiratory doctor had exposure to adults with Duchenne. 

BLOOM: You and Torrance lived in your family home. Who provided his care?

Torrance Ho: For most of his life, his physical care was primarily done by our mom, and about 25 per cent of his care was done by personal support workers. When Torrance's condition progressed and our mom got a stage 4 lung cancer diagnosis, we needed more care, which we got through the Local Health Integration Network. Thankfully, about 95 per cent of the workers were really good.

When Torrance was having that terrible health challenge, we were still doing the bulk of the overnight care. My mother, her partner and I would rotate overnight shifts. It was really rough.

After our mom died in 2021 I advocated to increase his care. I used a tool that I learned at a death café. One of the nurses there told me to use the term 'palliative care' in my advocacy. The nurse said that was the only thing that would get their attention. I've been coaching other sibs and family caregivers to do the same thing.

In Torrance's last year he had 75 hours of care per week, which included six overnights. But only because I used the term palliative care.

BLOOM: How did having Torrance as a brother influence your life?

Terrence Ho: It impacted every aspect of my life: where I went to school, where I went to work, even the career path I took in assistive technologies. It had some negative impacts on my romantic life. My previous girlfriends were okay with it, but I often struggled with feeling I wasn't able to give the right amount of time to everyone.

My last relationship was the toughest. After my mother died, my then fiancé didn't want me to take care of Torrance. She wanted him put into long-term care. With my experience in visiting facilities for a family friend I also cared for, I found they didn't understand complex needs. Also, he was in his 30s, and the average age was in the 70s or 80s. I couldn't do it. I had to break the relationship off.

BLOOM: What advice would you give other siblings?

Terrence Ho: The first thing is that it's okay to not take on the primary caregiver role. As sibling caregivers we may feel a lot of guilt that we're not more involved. But it's okay to not take on that role.

Second, and what's more difficult, is to be able to have a candid conversation with your family about this. This could be messy. You need to talk about expectations and boundaries. From my personal experience I'd say the sooner the better. There needs to be transparency so we can talk about how to ensure our sibling is taken care of. 

This may not be a conversation you can have on your own. You may need a therapist or a third party to help facilitate it.

The third piece of advice would be to have as much fun as possible. Make time to just be a sibling, not a caregiver. I loved hanging out with my brother playing video games or going to watch sports. Growing up, understanding my uncles had died in their 20s, I made it a point to do as much as possible when we were young.

Now, after his death, I don't feel any regret. I think: Wow, in his 37 years of life we've done so much, accomplished so much, and created so much together. 

Check out this list of Torrance's social media channels. Terrence created the Mimi, Torrance and Terrence Family Fund to support groups focused on caregiving, mental health, disability advocacy, the arts, and inclusion. Like this content? Sign up for our monthly BLOOM e-letter, follow BLOOM editor @LouiseKinross on X, or @louisekinross.bsky.social on Bluesky, or watch our A Family Like Mine video series.