Abby and Ari Borstein - phaware® interview 589

PH Didn't Just Change One Life, It Changed an Entire Family

When pulmonary hypertension changed their father, Eric Borstein’s life, sisters Abby and Ari refused to let the disease write the ending. Instead, their family turned heartbreak into hope by creating a community "Where is EB?" 5K dedicated to raising awareness, honoring their dad, and supporting others facing the same rare disease.

What began as one family's response to unimaginable adversity has grown into something much bigger, a movement proving that every step taken can bring hope to someone still searching for answers.

Learn more about the 3rd Annual Where is EB? 5K Walk and Fundraiser benefiting Team PHenomenal Hope September 20^th @9am in Santa Monica, CA.

Abby Borstein:
I'm Abby Borstein and I am from Los Angeles, California. I got connected to the world of pulmonary hypertension because my dad, Eric Borstein, was diagnosed back in September of 2020.

Ari Borstein:
I'm Ari Borstein. I am also connected to the pulmonary arterial hypertension world through my dad.

Abby Borstein:
I think early on, pre-diagnosis, I wasn't entirely aware of what my dad was going through. I think that if I look back whenever I was paying attention, I understood that something wasn't right, but at the same time, I don't remember a lot from before he collapsed. I was aware that there was something abnormal about his behavioral interactions and things like that. But as a kid, you don't really, your first thought isn't like, "My dad has a disease." It's just like, "Oh, he had a bad day," or something like that.

Ari Borstein:
I was in sixth grade at the time, I was 11. We were in quarantine, so I was doing online school. Abby was in her room, my brother was downstairs, my mom was downstairs. Everyone just kind of wasn't around. I was told by my teacher to go grab a deck of cards. I left my room with my laptop on Zoom and my room is on the opposite side of the hallway from my parents' room where my dad was. He was on the edge of his bed. I noticed that he was coughing a lot, which was kind of normal, but it was more than usual and there was white stuff coming out of his mouth, too. I just slowly got closer to him and was calling out, "Dad," trying to figure out what was going on, if something was wrong and he wouldn't answer me or look at me.

I got to probably six feet away from his door when he had collapsed. I didn't understand what happened, because the first thing that pops in your head when your dad falls in front of you is, he's dead. I froze, and then eventually, I started calling out to my mom who thought I was laughing at the top of the stairs when I was actually crying. Then, they called the ambulance and he was taken out.

Abby Borstein:
I think I heard Ari first. I was in my English class and I was in my brother's room on Zoom and I was really bored, obviously. When you hear your little sister laughing, you want to go see what she's laughing at and what's so funny. I remember I walked out of the door and I just saw her hysterically crying. I looked over and that's when I saw my dad in the pool of blood. I think we were both tunneled visioned, and so not fully understanding what was going on around us. Eventually, he was taken to the hospital after about 30 minutes of being unconscious. He went to Cedars-Sinai, I believe, in Los Angeles, and then taken to St. John's Hospital after where he was in the intensive care unit for, I think it was around 17 days, something like that.

My memory of those few weeks was, I was in my room a lot, staying up until the early hours of the morning, just not really being able to sleep. There were two sides to it for me. One being that, as the oldest sibling, I felt like I had to be really strong and put up a good front and take care of my siblings. It was COVID time and so my mom was at the hospital a lot, but there was only one visitor allowed at the time. We were spending weekends with our family, friends, or people coming over to take care of us, because our parents couldn't be there, obviously.

We weren't receiving a lot of information for a while so we didn't really know what was going on while he was in the hospital. I think a lot of the adults in our lives were trying to keep us away from the reality of that he was being told he had two to four months to live and being diagnosed with this really rare and serious disease. We were a lot less naive than a lot of the people around us thought that we were, but we still weren't getting a lot of the details. It was a lot of just being taken around to different places, being in our house, trying to take care of my siblings and be there for everyone, while also wanting to be entirely alone and isolate myself and try not to face what was going on around me.

I remember he came home after three weeks and I saw him and I remember my siblings ran to go hug him, but he, in the hospital, had lost around 50 pounds and had an IV going into his heart. I remember there was a moment where I just didn't recognize him as my dad, which was really scary. He kind of looked like a completely different person. When you lose that much weight, you look taller and you look, obviously, thinner and he was red and tired, obviously, and had been through a lot and was just really sick. I remember I didn't really want to go touch him. It felt like a stranger to me for a second, which I never really admitted at the time, but I remember that being a very pivotal moment for me and realizing that everything was about to change in our routines and the way that we lived our lives around our dad.

Ari Borstein:
I think it was very different for everyone. I know that I definitely have my own story of how things unraveled, but I think with my dad, at first, he had a nurse come in every week to change out his IV and the medicine, which was obviously very different to have some nurse walk in and every week having his medicine change.

I became very quiet and very careful because I, personally, didn't want to feel like another weight for the family to have to deal with. That was the start of me just becoming, "I'm fine," was a go-to answer for me. Also, having two siblings, one with bad anxiety, and Brayden was so young at the time where he, I don't think, fully understood what was going on. When my dad came back home, I would try and keep a very strong front up for my brother, mostly, because I just didn't want him to have to worry about more.

Also my mom, too, who was going through a lot at the time, obviously, having her husband now come home and having all these issues and the dynamic of the family definitely shifted a lot from before. My dad was in a lot of pain. There were a lot of fights that would happen that I, personally, heard a lot of them between my parents. It was already hard before, and then once he was diagnosed, part of me feels like it was a bit of a relief in some aspects because now, my dad finally understood what was going on with him. My mom finally understood. There was no longer this friction between my dad and the rest of us because he finally understood what was going on.

But also, it just created new challenges in the family with having to deal with watching your dad struggle with something so much. Someone in my life who I've always been very close with, I consider my dad one of my best friends and he was always so strong growing up. Then, to see him not be so strong anymore was really hard, which I think anyone going through having a family member go through something like this, it's very common to be like, oh, this person is no longer this rock in my life. It was hard for me to want to lean on him for things because then it was like, oh, I don't want to put more on him.

I think just when it comes to dynamic wise with the family, it all shifted in a way that was like some things were relieved, but also, there's now this huge weight on your family to have to deal with.

Abby Borstein:
He started to come from this really awful place where he had to face the fact that he was probably going to die, or he could say no to that and not give up on his life quite, yet, for himself, but also for us. We weren't there, but I remember my mom and dad say that when he was in the hospital, he didn't want to know how long he had. He didn't really want to understand this disease completely. He just knew that he wanted to fight whatever it was. I think he came home with a goal in mind of, "I'm not letting this defeat me.", I think at first, obviously none of us knew that. None of us fully understood what the disease was, yet. It was just like Ari was saying, a lot of nurses coming in out of the house and the whole readjusting to this new way of life for himself and our family.

But as the weeks went on, he was going into the hospital, getting checkups with his doctors and I think just had this tunnel vision mindset of, "How am I going to get to the other side?" He realized that with the extreme side effects of his medications that he has to take and the IV that was going into his heart, something that really helped him was walking. I think he discovered that in the hospital when they would have him walk him up and down the halls. Then, he started with taking walks in our neighborhoods.

I can't tell you exactly when there was this big shift for him, or for us, in general, but I just remember all of a sudden within a year, he was walking miles and doing so much better. Now, almost six years later, he's walked to San Diego twice and walks up to 40 miles a day. I have friends that text me photos of my dad around LA on the same days saying, "I've spotted EB." He has turned into this early inspirational figure for a lot of people. It's really a testament to how much work he was willing to put into changing his life around.

Ari Borstein:
Watching my dad over the years coming from where he was of not even when he came home, not being able to walk down the block to now walking as much as he does and spreading awareness about something that has taken over his life. It can't be easy. I think watching that shift from going from this thing has taken over my life and something that is not easy to have to deal with or I'm sure you even talk about. I think also, the fact of admitting that you have a disease, I think, was hard for him, too, from what I saw from the outside to then wanting to dedicate his life to spreading awareness.

He was up in Thousand Oaks in California and he was talking with a bunch of patients and he was receiving texts and emails after saying, "What you were saying was so inspiring and it makes me want to push and survive this and do what you do." I think seeing that shift is incredibly inspiring not just to people who live with the disease, but also to me. Seeing someone, as I said, that was so strong before being diagnosed to then becoming this weaker person to now being the strongest that he's ever been is super inspiring. I just hope that people will truly listen to his story and open up themselves and realize that there's a lot more that is possible than what people put out for diseases like this.

A lot of the time, at first when he was given those two to four, however many months to live, a lot of people take that and are like, "Oh, I should just really cherish these next however many months." But to see him fight for not just himself, but also just to be here for us and for his friends, and his relationships with his friends changed a lot, too. I think he's also come at peace with what he has, as well, and being able to make a difference for more than just himself and for a greater group of people is really special, I think.

Abby Borstein:
I believe it was 2023. It was the beginning of my junior year of high school and I didn't want to sit with the feelings that I had anymore. It's a lot to handle as a kid. You never fully get over it, I don't think. It comes in waves, healing. It got to the point where I didn't want to feel bad about it anymore. I didn't want to feel bad for myself because what he was doing was so amazing and I wanted to be able to share that with people. I decided that I wanted to present the idea to my dad of creating some sort of event. I had no idea what that would look like, but just something where he could do a speech about what he was going through and how resilient he was and how he had overcame this diagnosis.

I remember being in the car with him and I presented the idea to him, and he immediately said, "I've been wanting to do the same thing." There were multiple conversations after with my parents of what that would look like. I was coming up with ideas on my own. Then, they ultimately came up with the idea of a walk, like a 5K where people could join in and hear about pulmonary arterial hypertension and my dad's story. From there, it just blossomed into this really big thing that was unlike anything we could have even imagined.

We got in contact with Team Phenomenal Hope. From there, my dad made a lot of connections with people who were trying to do the same thing with his disease. We had the first Where is EB event in 2024. Now, the Third Annual Where Is EB? 5K Walk is going to be September 20th on Annenberg Beach in Santa Monica.

Ari Borstein:
Since walking was such a big part of his life, I think he just wanted the idea of what is something big that we can do to raise awareness. That was part of his healing process. I think that's how the idea of LA to San Diego came up.

Abby Borstein:
I don't know the full story of what was going on in his mind, but I remember being on calls with him and the people at Team Phenomenal Hope. I just think that our dad's the kind of person where once he gets his mind on something, he's going to pursue it. As new opportunities come up, he's just like, "Yes, I want to do that and I want to keep making this bigger and bigger." Initially, it was just the 5K, I think, but I think he knew deep down that he wanted to do more walking, as Ari said. That's something that is obviously very important for his story. I think just being on calls and realizing he could go even further and then meeting with doctors. Then Hap Farber, MD rode his bike along with my dad. I think realizing that he could have support with that and then trying to just see how far he can go with this event.

Then, his walk after that, I think it ultimately got to San Diego, because we have family down there and it's by the beach, which is really important to my dad and that's his happy place. He says for a long time after being in the hospital, he couldn't be in the water, which he grew up on the water. That's just a place where I think he feels at peace and is able to work through his emotions that come with this diagnosis. San Diego just felt right for him. He was able to walk through Camp Pendleton because of a connection he made with Carl Hicks through Team Phenomenal Hope. It just got bigger and bigger and my dad's not one to say no to things and it made him really excited and it was such a big deal for him. This is not something that is normal for somebody with his disease or a disease like it.

During his first walk, actually, he was only supposed to walk 188 miles or something like that. I was at home in LA making letters to people who subscribed every day just to update on his walk. Then all of a sudden, I got a text saying, "We actually decided to go all the way to the border and back." So it ended up being 202 miles. Yeah, it just ended up in this really big celebration of how far he'd come.

Ari Borstein:
I then I see people come out beyond just our friends, at first it was very shocking because I was like, "How did this become so much bigger?" Even just hearing people taking long trips just to get here and to be involved, and also going around -- because part of it is going around and asking for donations and telling that story. I think having people so willingly be like, "Yeah, I'll donate to this," or, "I want to support this," was really special. Seeing how much it's grown, too.

Abby Borstein:
The first one exceeded 300 people. We were aiming for 50 to 100 people. Then, we got there and we didn't have enough food and the beach was filled with people for this event. I wasn't able to attend the second one.

Ari Borstein:
It definitely grew. There were a lot more booths and a lot more people that showed up. Also, what I think is really fun is when we are on the 5K walk and we're all walking down with our “Where is EB” shirts, I've had a few people walk up just that we're on the beach being like, "What's this for?" I've had some of my friends go off and tell people and then I'll tell people and they'll be like, "Oh, that's so cool. When is the next one?" Or, "How do we get involved?" I think that's really cool, too. It's just seeing how willingly people are to support something that is not very known, which I think was the most shocking factor for me was that none of us knew what PH was before my dad's diagnosis. Then, to see people who don't even know what it is wanting to learn more about it and wanting to support it is really exciting.

Abby Borstein:
I think it is probably different for all of us. For me, there's a couple different sides to it. Part of me is really happy that somebody's so interested and I'm able to educate someone on a disease that impacts a lot of people's lives and can inspire people to get involved. Or I've had scenarios where people don't necessarily understand exactly the situation, but they can apply it to something going on in their lives and makes someone feel seen.

It's always weighing on me. I think about it and what happened quite a lot, but I try to distract myself a lot and not really think about it. When we're trying to solicit auction items for the event and I'm usually going to businesses around where we live that I'm going to on a daily basis. Seeing these people that I've known for so long that don't know this side of the story, I think it can feel quite heavy. Having to explain that my dad has this disease, he almost died, but is doing really well. But also knowing that there's so many layers to that, I think it's hard to, A, encapsulate every small moment or feeling or emotion that goes along with this experience in just one short conversation and really get people involved.

It's hard for me to show this side of myself. I don't think we really like to talk about it. I remember there's one situation where I ended up sending an email about the first event to our entire school. This was kind of the first time where a lot of people were learning about it. We went to a really small high school and so it's a very close community, but we don't talk about this experience a lot. I remember I went down to the library to check out a book and the librarian just looked at me and was like, "I would've never guessed that you and Ari would've gone through that. You don't seem like the kind of people that went through something that big." Our whole family tries to maintain a positive outlook or maybe keep those emotions hidden. It's turned us into the people where we want to make other people seen rather than the alternative.

It's hard to have people then see that side of us, but it's also nice to then see that it doesn't have to define us. It's something that was really awful that happened to our family, but people really do care. When it comes to people coming to the event and things like that, for me, I remember I had a lot of conversations with my dad about the fact that it's almost a learning lesson, the way that you treat people in your daily lives and how much you invest in your relationships. The turnout at the event was a testament to how much my dad had invested in the relationships and friendships in his life and my mom and my brother and my sister and I. It's just a lesson in that it really does matter how you go about your days and people really do see you and see what you do for others. I think that was a positive and a light in the dark.

Ari Borstein:
Also, in a lot of ways, it opens up a lot of doors for conversations that you didn't think that you would have. I had an experience with a teacher at my school. She's never taught me, and so she didn't know who I was, but she shared a story to one of my classes about her son who has galactosemia, which is also a very rare life-threatening disease. Afterwards, that was the first time that I'd felt very seen and heard by someone and a story that someone else told about an experience that they had that was very similar to what I had. She was saying that it really affected her family dynamics, and now having to take care of this other person and not wanting to talk about it and not wanting to admit her son has this life-threatening disease.

Afterwards, I, for the first time, went up to her and I was like, "I want to have a conversation with you because I went through this with my dad." We ended up having a super long conversation and she had thanked me for wanting to know more about her son, because not a lot of people understand. I had thanked her for truly have never felt so heard by someone else's story and being able to talk about this with someone else. She and I were able to really connect through that. I think having those kind of conversations with people, I would never have understood or been able to have a conversation about that with her if I hadn't gone through this with my dad. I think in some ways, it opens up a lot of doors for new conversations.

Abby Borstein:
Yeah, I think you see people differently when you go through something like that. You're able to understand people on a deeper level and be more empathetic towards whatever people are going through, which has changed all of us a little bit.

Ari Borstein:
When it comes to advice, a piece of advice that I'd like to give to other people who have gone through something similar in this situation now, one is something that I wish I could go back and change that I would tell anyone to do, which is talk about it. Because I think initially, just right off the bat, not talking about it really set me up for failure because then now, even years later, I don't talk about it, which is not good. Making sure that you really talk through it all with people. I wish I had talked about it with my dad more in the beginning. Also, embracing it in some ways is really important. The hardest part is the grief that comes with it and the denial that comes with it, “I don't want this person in my life to have this, or, I wish I didn't go through this.”

I think in some ways embracing that it did happen, embracing all of the good aspects that come out of it, like being able to have these other conversations and being able to now spread awareness about something that you didn't know of before and now being able to be almost proud and be like, "Yeah, this aspect of my life has changed my life in so many different ways and it has made me into the person that I am now,” but I now have this new gift that I'm able to talk about and spread awareness for, and all these new people that I'm now meeting through it.

Abby Borstein:
I have a two-part answer for this. One, don't feel guilty for going through whatever emotions you're feeling, even years after. For a long time, I've gone through phases of I don't deserve to feel this way. My dad didn't end up dying. I just should be grateful and move on and deal with it. There's other parts of me that it's changed how I view a lot of things and how I live my daily life and it's changed the way I view relationships. I feel like it's my responsibility to make sure that other people are okay and put other people before myself, almost to a fault sometimes. It also, and I'm not always very vulnerable about this, but I think it's important to share for other people that go through something. We all deal with these things in different ways.

For me, I got really angry. To this day, still, I think I can get resentful or angry about certain things and it all leads back to what happened with my dad. I think it can make me feel really uncomfortable to be vulnerable sometimes and make me feel bad about the emotions that I feel. I just think that my biggest piece of advice is, don't beat yourself up if you have a bad day, or if you feel sad about this, or anything along those lines because it's a big weight on you and you deserve to feel whatever way you do. Just because maybe someone else isn't dealing with it in the same way as you, it doesn't mean that your feelings are invalid or wrong.

Anticipatory grief is also a big thing that I've had to understand. I think part of me is like he's still here and he's doing so well and that's what people see. You see this really strong figure who is now completely fine. While that's partially true and he's so strong and he's my biggest inspiration and every day I wake up wanting to be a little bit more like him, you don't see the things that we still deal with or go through, or the bad days or the bad things. You're allowed to sit in whatever emotions you feel. A big thing for me is that knowing that while he's doing so well, this disease doesn't have a cure. So, knowing that one day things could worsen or just knowing that that is a big possibility, I think, is something that weighs on me daily, and you're allowed to sit in that.

My second part to that is just knowing that it's not always healthy to just sit in that, though. You have to get up and do something with it and you have to look around and be like, "Okay, well, how can I turn this into a positive?" It wasn't a positive situation, but how can I live my life in a way where I'm taking what I've learned from the situation and applying it to being a better person or telling people this story or trying to just be a little bit stronger?

Ari Borstein:
I hope that in the future, it gets to the point where when someone hears the term pulmonary hypertension, they know what it is. And people know about it enough to when they hear it, they know how serious it is and they want to help it more because even from where we were six years ago to now, I think more people in our community does know what it is. But I hope it gets to the point where around the country or around the world, people start viewing this disease as any other very serious disease. I hope that they know what it is when it is brought up, because that's the only way that awareness can be spread more and more people can be helped and more lives, hopefully, can be changed and saved.

Abby Borstein:
I really just hope that in the years to come, we continue to do what we're doing and continue to spread awareness on a disease that so many people don't know about and will never live to hear about. I think that what my dad is doing and what everybody we know we're doing and our family is doing is so important. If we can make one person feel seen in their own individual experience, that's such a win for each member of our family. That's all we really want is to make people feel understood and then to go beyond that.

And hopefully, with the funds that we raise through this event and everything that my dad is doing and all the awareness people see that and want to help. Hopefully, down the line there is some kind of cure found or just more research being done so that people can be diagnosed early, because for a lot of people, the case is that you don't find out until it's too late, or once you do, there's not enough research to be as lucky as my dad was. I think that with what we're doing, hopefully with all this awareness and all the research being done, there can be more success stories with pulmonary hypertension in the future.

Thank you so much for listening. If you can, please come out for the Third Annual Where is EB? event on September 20th in Santa Monica, California. I'm Abby Borstein.

Ari Borstein:
And I'm Ari Borstein…

Abby Borstein:
And we're aware that our dad is rare.

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