Wednesday, November 21, 2018

A brother's illness inspires teen to 'cherish every moment'

By Louise Kinross

Vanessa Williams, 18, has spent three years on the Children’s Council at the Hospital for Sick Children and last year she chaired the group. SickKids has always been a part of Vanessa’s life, as her older brother Daniel has sickle cell anemia—a condition in which a person’s red blood cells are shaped differently. This makes it easy for the cells to stick together and block off small blood vessels, causing pain and organ damage.

As a teenager, Vanessa became a patient at SickKids, too, after she was diagnosed with post-traumatic stress disorder, anxiety and panic disorder. We spoke about what it was like to grow up as the sibling of a child with a chronic, sometimes life-threatening, condition.

BLOOM: Tell us about how you were first exposed to SickKids?

Vanessa Williams:
When my brother Daniel was six months old he was diagnosed with sickle cell anemia. So when I was born, SickKids was my second home. When Daniel was younger, he was in and out of the hospital once every three months. Initially, I never thought anything of it—it was the only life I knew. I used to look forward to when he had his annual physical, because it meant I got to take the day off school, and could roam around the hospital. It wasn’t till I was 12 or 13 that I started to realize how severe his illness was.

BLOOM: That it was life-threatening.

Vanessa Williams:
Yes, in 2005 he fell ill and was on life support at SickKids. That’s where my anxiety started to stem from. I recognized that the life I was leading wasn’t normal to my peers.

When my brother was on life support, my mom didn’t want me to see him in that state. But when he was on a regular floor, it was a very emotional time for me and my whole family. His flare-ups could happen out of the blue. It forced me to grow up at a very young age.

BLOOM: What was the greatest challenge as a sibling?

Vanessa Williams:
Just talking to peers about it, and feeling like I was alone outside of my house, and even with some extended family members. They didn’t understand it. People on the outside think they understand, but you don’t know how much a chronic illness can impact a person until you’re in that position. The other kids I knew didn’t have a sibling with a chronic illness.

BLOOM: So I guess if you would tell your friends about what was happening, but they probably couldn’t relate in any way?

Vanessa Williams:
For the most part, I usually got a reaction of ‘I feel so bad for you.’ But I didn’t necessarily want a pity party, I just wanted to be supported. No one had that relatability of understanding, without me having to explain every little aspect. There were a few individuals in my elementary school years who were great supports. Most of my teachers were very understanding. But for the most part, no one understood what I was going through.

BLOOM: We have sibling programs at Holland Bloorview and there is a group called Young Carers that runs programs for children who support any family member with an illness or disability. Have you ever participated in those?

Vanessa Williams:
No, I haven’t. I feel that’s something that would be a huge success at SickKids. I remember at one of our council meetings a sibling stressed that she wanted support at a time of crisis when her sister was in the hospital. They don’t receive it outside of their inner circle.

My mom always used to say that when my brother was in hospital she tried to split time between him and me so that I didn’t feel like I’m left out or not loved. But when I was younger it bothered me. I thought everyone cared for him more than me.

BLOOM: That’s a natural feeling. In studies of siblings, a common emotion is resentment, because it seems like the sun revolves around the ill child. And even though the sibling knows her brother or sister has extra needs, you still feel left out.

Vanessa Williams:
I’d like to see more support groups for people who are facing the same illness, whether it’s the kid with the chronic illness or the sibling or the parents.

BLOOM: How did you become a patient at SickKids?

Vanessa Williams:
When I was 13 I was seen at Centenary Hospital for my anxiety. It started in Grade 7 when I was feeling nauseous all the time. I’d feel scared to go to school, and I had a horrific panic attack at school. I also had dizziness and was feeling overall anxious. When I was 16 I became an outpatient at the teen clinic at SickKids.

BLOOM: What treatments did you find most helpful?

Vanessa Williams:
I learned techniques in cognitive behaviour therapy, as well as talking it out. I’d use grounding techniques to reassure myself that my symptoms were just the anxiety, and it would pass after a certain period of time. Another method was being able to distract myself from how I’m feeling. For example, when I was experiencing an anxiety attack my brother would start talking about something aside from that, and that would help. I also had a grounding rock I used to use.

Other stuff that helped was doing extra-curricular activities. In an odd way, doing things that initially provoked my anxiety, like being a part of the Children’s Council.

At the Children’s Council I was surrounded by other individuals who understood my experience. During meetings someone would say something and I’d say ‘Oh gosh, I’ve felt that all the time, but I thought I was the only one who felt that way.’

Last year I got involved in a community youth council. I’m interested in politics, and we got to come up with ideas for initiatives in our community. The doctor I was seeing at the time said I had to do stuff that I enjoyed.

BLOOM: What advice would you give to another sibling of a child with a chronic illness?

Vanessa Williams:
Make sure that you have some sort of concrete support outside of your family and friends: a therapist or a community leader who can give you concrete advice. It needs to be someone who understands your experience and is older than you.

BLOOM: It sounds like you’re saying you need specialized support?

Vanessa Williams:
Yes. Every sibling of a patient who has a chronic illness needs it. And we also need more supports for the person who has the chronic illness. Having someone who is older, who has the same illness, and can talk the younger person through it and be a mentor.

BLOOM: Is there a project you were involved with on the Children’s Council that you’re most proud of?

Vanessa Williams:
During RBC's Make 150 Count campaign they reached out to our council and gave us some boxes with $150 in them. We broke into groups and came up with how we wanted to Make 150 Count through the hospital. My group gave out Timbits on the floors to the nurses. Another group gave out pillows and blankets to people in the emergency room. We were also part of a video to create a Canadian Children’s Charter. This year, I was able to facilitate a group for the SickKids’ GetLoud walk and we raised $1,500 in a short period of time.

BLOOM: That’s great. What do you hope to do after high school?

Vanessa Williams:
I want to go to university. I’m leaning towards University of Toronto's VIC ONE program. It focuses on eight different majors and has small class sizes, which I need. It reminds me of the alternative school I go to now.

BLOOM: What would you like to do eventually?

Vanessa Williams:
I know whatever I do will be along the lines of what I’m doing now—helping others. It may be within pediatric care. I’m very passionate about that. I’m also really interested in public policy. A goal of mine is to be part of municipal politics. I love Toronto. As a municipal leader I want to be able to help those within the city.

BLOOM: A number of studies have shown racial inequities in the way people receive health care. Has race ever been an issue for you in the care you or your brother received?

Vanessa Williams:
No. I know a lot of people complain about reaching roadblocks as a result of their sexuality or race.

BLOOM: Or disability.

Vanessa Williams:
Sickle cell anemia only impacts black people and other visible minorities and it was never an issue for us. My mother was a personal support worker in palliative care, and she was always very hands on with my brother’s care. She made sure he received the best care.

In my case when I was suffering from mental illness, I never felt like I was getting less care than others. SickKids has always been a safe place for me. I knew that no matter what was happening with my brother, or myself, we were receiving the best care possible.

BLOOM: How are you a different person because of your experiences with Daniel?

Vanessa Williams:
First and foremost, I feel like I’m more mature than a lot of kids my age. And I have a very different perspective on life, because my brother has faced life-and-death situations. I cherish every moment.

BLOOM: How is your brother doing now?

Vanessa Williams:
He’s doing well. Since he’s gotten older his condition hasn’t been as severe as it was when he was younger. He’s currently at Centennial College and he’s going to go to Ryerson for social work. He always said he wanted to do political science at U of T and then days before the applications were due he changed his mind. ‘You know what?’ he said, ‘I want to help other kids who have faced what I’ve faced.’