I’m Aware That I’m Rare: Brin Marks(419)

the phaware® interview

PHA Canada Ambassador and pulmonary arterial hypertension patient, Brin Marks, discusses her road to diagnosis, her strategies for staying positive and why she wants to be a voice for change for pediatric PH patients everywhere.

My name is Brin Marks. I am currently residing in Alberta Canada. I was diagnosed with pulmonary arterial hypertension about three years ago. A few months prior to when everything happened, I had noticed that I was overly tired. I would get lightheaded and dizzy and my hearing would be muffled. I didn’t think anything of it because I was diagnosed with severe asthma at the age of four, and I had allergy testing so I just thought it was my allergies and asthma at the time. I was in gym class one day. I was playing soccer. I remember running to the goalpost from the opposite team and everything had just gone black. My hearing was muffled. My gym teacher told me that I was out for five minutes. I was rushed to hospital, because when I collapsed I was also seizing. It was the local hospital initially, but they sent the test off to the Stollery Children’s Hospital and I was admitted there and I had to do MRIs, a lot of blood work. Then they diagnosed me with pulmonary hypertension.

My mom was in the medical field, so she had heard about pulmonary hypertension. My grandma, my mom and my uncle were the ones who heard my diagnosis, who were there in the room with me. They were crying. Obviously, it was really sad. I was more so in a daze, I guess is the best way to put it, because you never think that this stuff is going to happen to you personally. I was just living my life and playing basketball, and then all of a sudden everything just flipped on me. The doctors were looking at me like I had eight heads because I wasn’t saying anything.

It was an interesting experience, because I was being told I wouldn’t be able to have children, I wouldn’t be able to play basketball again. I had told them I can still have a baby through adoption. Surrogacy is a thing. I just can’t carry children. You never think at the age that I was, you’d be hearing that kind of news, because I had my life planned out for what I wanted. I was in a daze and that lasted for a while.

It definitely had an impact on me socially. I still have social anxiety. It definitely had an impact on the friendships that I’ve had. I didn’t have oxygen right from the get-go, but it was a few months after the fact that they put me on oxygen. Everybody in my gym class was there, so they had known. It just flew around the school. So, once I got oxygen, I stuck out like a sore thumb. It was the most awkward and embarrassing experience, because I wanted to fit in. I wanted to get along with people. It was very cliquey at that school, so everybody had their friend groups, and once I was on oxygen, everybody would just stare at me in the hallways. I still have a lot of social anxiety because of it. I’ve learned to be patient with myself though, because I deserve it. My body needs it. It was interesting to say the least.

I definitely used art as an outlet. I’ve always been into drawing ever since I was little and could hold a pen. Art was definitely one of my go-tos, especially my art class. My teacher was amazing. He was so funny. So, that was definitely one of the biggest things for me to distance myself from reality, get rid of my anxiety for a little bit. I also am very much into reading, and so that really helped me at the time as well as listening to music. I just tried to take advantage of all of my hobbies to distance myself from my new life, I guess you could say.

So me and my mom, we’ve always had a very close relationship, but since I was diagnosed with this, it has been a fun experience because her and I have been doing a lot of things for PHA Canada once we discovered them and their organization. We’ve definitely made the most of it. When it comes to my clinic days and I have to do my six-minute walk test, her and I always put Uptown Girl on and we blast it in the hallways while we walk for the six minutes, because she walks along with me. She’s always there right by my side. She’s my buddy. But definitely listening to Uptown Girl has been one of the best things that has made this whole experience feel better and made it more positive. So we’ve definitely been making the best of a bad situation, I guess you could say.

So, me and my mom, we have this little thing that we do, and it’s called Collect the Wins. Every day, after my dad’s done working and I’m done with work, because I work part-time, we sit down and we talk and we talk about all of the wins that we’ve had throughout the day. One might be that I wasn’t as tired as I’d usually be. That would be one of our wins. That I wouldn’t be tired while walking up the stairs to go get changed is another win. That is probably the best thing that I could give to other people, is collecting the wins, because having a positive outlook on life has definitely helped my journey because I feel like if I had a negative outlook, I wouldn’t be where I am today. I definitely say to everybody collect the wins, even if it’s a little win to everybody else, it still deserves to be celebrated. That is what has helped me. That is what has helped my mom. That is what has helped my dad throughout this whole experience.

Ever since this past February, I’ve been transitioned into adult care. It’s definitely been a positive experience. I have the honor of having Dr. Jason Weatherald as my specialist. He has a lot of brains for sure, which is really comforting, because if I have any questions, he’s just straightforward and he answers them. It was definitely different because in pediatrics, they usually talk to the parents since I was a minor at the time, so it wasn’t necessarily like they were talking to me about the treatments that I was going to be getting. That was one of my struggles, because I wanted to be talked to just so that I was in the know.

Ever since transitioning, it’s been awesome because obviously he talks to me now, directly to me, and I get to make the decisions on what I want for my care moving forward from this point on. It’s been one of the greatest things I could ask for throughout this whole thing is having Dr. Weatherald as my specialist. He is honestly, incredible. People aren’t lying when they’re talking about him. He’s incredible. It’s been one of the highlights, I’d say, of this whole journey.

One thing I will say is that it was very exciting once me and my mom became ambassadors for PHA Canada. My mom and I had been doing fundraisers through the Stollery and for PHA Canada. Even before we were ambassadors, we would be a part of the Zoom meetings that they put on just because we wanted to be a part of the PH community. When I was diagnosed, it was a very lonely thing because we didn’t know that there were other people here in Canada who had PH because it sounded like the most rare disease that’s out there.

We had done a lot of fundraising, been involved a lot with putting on little events for the kids in pediatrics just through Zoom meetings, because of COVID and everything. My mom had actually become an ambassador before I did. They had asked her through a meeting that they had, and obviously she accepted. Then, not too long after, they had a meeting with me and asked me some questions about why I wanted to be an ambassador, what that would mean for me to be an ambassador. They finally told me that I would represent PHA Canada. I was so excited that day I was jumping up and down. It was insane.

Definitely, from this point moving forward, I want to be a sound voice for all of the kids who can’t stand up for themselves necessarily, or can’t voice what they would like when it comes to their medical care. Even though I was a teenager when I was diagnosed, I know for me that it was definitely hard advocating for myself, and my mom was the one who would talk for me because I was too nervous to. I want to be that voice for kids specifically, since that’s where I started, and just stand up for them and give them a voice and make them feel like there’s hope for living a fulfilling life with PH. Even though it looks different, you can still accomplish the things that you want to. It’s just not necessarily the route that you’d want to take.

That is my goal throughout this whole thing is just giving people hope and be a good support system for other people. My mom, she’s been making a lot of changes, especially within the government because now we have funding for oxygen, which is incredible. Things like that is something I want to be a part of because when I was a kid, I always told my mom, “I want to change the world,” and so I’m hoping that this is my way that I can do that for other people.

My name is Brin Marks, and I’m aware that I’m rare.

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