Eric Borstein - phaware® interview 573

Why “The Walking Guy” Trusts His Therapist as Much as His Cardiologist

For PAH patient, Eric Borstein, walking started as a way to survive medication side effects. Now, it has become a way to survive himself. Each step pulling “EB” further from an ICU bed and closer to an identity that isn’t defined by illness. Mental health has reshaped his recovery, and has become one of the lifelines he believes should be prescribed alongside life-saving therapies.

I'm Eric Borstein. Five years ago, I was diagnosed with pulmonary arterial hypertension. I collapsed and nearly died. I spent 16 days in the intensive care unit where very early on I learned that walking helped mitigate the very powerful drugs that I was put on, the lifesaving drugs. When I left the hospital, I continued to walk as a form of therapy. It allowed me to titrate very quickly with the intense drugs that I was on, which now, looking back, saved my life. When I left the hospital, the diagnosis was very dire. I was given two to four months to live. I was put on a pump. They never thought I would get off the pump. The walking helped. The walking not only helped mitigate the side effects, but I learned very early on that it helped with my mental health. 

Right out of the hospital, I started talking to a psychologist once a week, who I still talk to this day. He's become not only a very trusted personal friend, but somebody that I rely on equally as much as my cardiologist who treats me for the PAH and as important as the drugs that I'm on today that I know are life-saving drugs. Without those drugs, my health would rapidly decline. 

I learned that positive mental health was critical in somebody living with a disease like pulmonary arterial hypertension. I was diagnosed, again, with idiopathic PAH. We didn't know why I got it. Unfortunately, there is no cure for this disease. So, there are things that a patient living with a chronic, and I'll say terminal disease, deal with that the everyday person doesn't have to deal with. That portion of my recovery, the mental health, has been critical. As time has passed, I've learned more and more about why positive mental health is so important and why... really tying it back to walking.

For people that don't know me, my nickname is “The Walking Guy.” I've not only used walking as a form of my recovery, but it has kind of become my identity. It's become a way of not only being recognized, but a way to bring awareness to this disease, this very rare disease. The more time that has gone on, I've started asking the question, “Why does walking make me feel good?” I know why it makes me feel good as far as mitigating the side effects (of the medications). It helps metabolize them through my body and it makes me feel good physically, but why does it make me feel good mentally? My psychologist has done an amazing job at teaching me these things and has taught me both in technical terms and in layman terms, why. It really comes down to three different reasons. The first, when I walk, and I walk 13 to 15 miles a day, I walk between 4,500 and 5,000 miles a year, which is amazing for anybody, let alone somebody living with a lung condition. 

The first reason is it distances myself psychologically from the intensive care unit. I spent 16 days in the intensive care unit and I was really sick. When I left, walking was difficult. When you're living with PAH, before I collapsed, I was suffocating. I was dying. I tell people that when I was diagnosed, it didn't come out of left field. I was sick. I was really sick. If I would've walked into a doctor's office anywhere between six months to a year prior to collapsing, they would've seen I was in heart failure, but I was afraid to find out what was wrong. I was scared to death. I was one of those people, especially males, who when they are critically ill or sick with something, they don't go to the doctor. That almost cost me my life. 

When I was at my sickest, I couldn't walk 20 feet without being out of breath. I couldn't walk up three stairs without feeling like I was suffocating. I couldn't walk from the bedroom to the bathroom without having to hide in the closet, because I felt like I was suffocating. When you're suffocating, you're alone. So, when I started to get better, and even to this day, when I go walk, whether it's five miles, 10 miles, 20 miles, or 205 miles from LA to San Diego, I'm distancing myself from the ICU. I'm distancing myself from when I was at my sickest. So, that's subconscious. That's not something you think about. You don't think about where you were five years ago. I don't think about the intensive care unit anymore. But subconsciously, when I'm able to go up that hill or when I'm able to push through those miles or when I'm able to go on an amazing walk, I'm not sick. So, that was the first reason, it's distancing myself from the ICU. 

The second reason is that when I walk, I'll walk by a building or I'll walk by a window or I'll get home and I'll look in the mirror. I don't see myself as Eric Borstein, the PAH patient. I see myself as EB, the guy that's kicking ass beating this disease. Unfortunately with PAH, there is no cure. I know that this probably isn't forever, but as long as I'm able to do this and I'm able to break through these barriers and I'm able to walk 500 miles in a month, or I'm able to get out of bed on days that are really hard, and I'm just able to go walk two or three miles, and I look in the mirror and I like the way I look. I'm not Eric Borstein the patient, I'm EB, the guy that's beating this disease. So, that's number two.

Then, the third reason is it was explained to me that positive mental health is really as simple as finding something that you love to do. For me, that's turned into walking. For other people, that can be filmmaking. It could be playing chess. It could be learning how to play the classic guitar. It could be bike riding. It could be swimming. It could be anything. For me, it's walking, but positive mental health is as simple as finding something that you love to do. When you're living with PAH, finding something you love to do can be that outlet that you're not this patient. 

I also tell people, when you're a PAH patient, you're reminded of that every day. You wake up, you take your medication, you weigh yourself. For me, I live by a strict diet. I do have to walk because it makes me feel better. If not the medications, the side effects are very difficult. You go through your day, before you go to bed, you take your medication again and you go to bed. So every day you're reminded that you're a patient. But when I can go out and walk or when somebody else can go out and find something that they love to do, it removes you from that constant reminder that you're living with this disease that there is no cure for. Those are really the three main reasons that it's been taught to me why positive mental health, why walking for me makes me feel better. 

But as time has gone on, as the months and the years go by, and I'm now able to share my story with people, not only my community and my friends and my family, but the world. The amazing thing is, I'm becoming recognized and more and more known in the rare disease world. But the more I share my story, the more I'm learning, it's transcending just PAH. It's really relatable to anybody. The messaging really is not only somebody battling a rare disease, but somebody that in the face of just the biggest adversity that anybody can ever go through. Lying in your bedroom, unconscious for 23 minutes, dying, there's not much more a person can go through in that moment. What I've learned is everybody faces their moment of adversity. Whether it's losing a loved one, battling a different disease, going through a divorce, losing a home in a fire, losing a home in a flood or a hurricane, everybody at some point in their life faces that adversity. For me, positive mental health has just become a critical tool in the face of that adversity on that recovery.

Again, bringing it back to PAH, the disease isn't going away. It's how I deal with it on a daily basis that's keeping me alive. Again, along with the life-saving drugs and other tools that I've learned help, positive mental health has just become that critical portion and that critical part of my recovery. I talk about it as much as I can to everybody. It's just something that I will always depend on my psychologist who's an amazing man, because I've learned that, at least for me, it's an equal part of my pie. I firmly believe it's one of the main reasons why I'm still here today. 

I don't do this because I want anybody to feel sorry for me. I do everything that I'm doing because number one, it helps me feel better. But then knowing that I'm helping others is a positive. I want to help other people. That is my mission and my goal and everything that I'm doing with this second chance is for my family. It's for my friends. It's for those that are close to me. It's for my community, but it's really to help others. I've been given the second chance. I told my wife in the hospital, if I could help one person when I'm dead, I've done my job. But what I'm finding is I'm helping more than one person. To me, everything is a positive. 

It's hard. Living with this disease is difficult. It is a struggle. I make it look easy. Being able to walk the distances I do and do the things that I'm able to do are not normal. I understand that and I don't take that for granted. I look at it as a positive and I want to continue doing so. Stepping outside of my body and looking back at it, it is a positive boost. I've only been sharing my story publicly for a couple years now. It's amazing how fast this is taking off and how many people it's affecting. I'm so happy and blessed. But when I first started talking about it to doctors and sharing my story and talking about the importance of positive mental health, it was only a couple years ago, but they were saying, "You got to talk more about this. You've got to get out there and you've got to talk about the importance of mental health. We want to talk more about this." Just in the last two years, it's becoming more widely talked about. 

I know mental health has kind of been that taboo subject for decades, but now it's more widely talked about, which I think is really exciting. What people are going to find is the more you can talk about it, the more it's going to help people and the more it's going to save people's lives, both inside pulmonary hypertension and outside pulmonary hypertension, but really coming back to the rare disease world and pulmonary hypertension and PAH, it is such a critical part of my recovery, but it's really, it needs to be talked about more because it is super, super important and it isn't taboo and it isn't something that people should shy away from. 

I come from a generation where you talked about your feelings… you did and you didn't. Then, I learned in the years leading up to collapsing, when I was sick, I tell people it was hard on our marriage. My wife didn't understand why I was kind of pulling back. I went from a very social person. For anybody that knows me now, social, outgoing, friendly, I pulled away. Again, I take it back to when you're sick with PAH and you're suffocating, it's hard to be around people. You can be around 100 people, but you're alone. So it was hard on our marriage. My personality changed. I just wasn't who I was. In those two years leading up to me collapsing, we started seeing a therapist. So, I learned before I collapsed to learn to trust a therapist. So, when I collapsed and left the hospital, it was very easy for me to get into therapy and to trust therapy and to know therapy works because therapy saved my marriage in a time where I was dying. I know therapy works. I am that person. I will be the spokesman for positive mental health and the importance of it living with a chronic disease. But I'm so happy that it's being more widely talked about and more widely discussed.

I'm just hopeful that we get to a point where it can be part of almost prescribed therapy. When somebody is diagnosed with pulmonary hypertension or pulmonary arterial hypertension and you're given a prescription for your drugs, that you're given a prescription for a therapist. I think it's so critical. It's not a drug you put in your mouth, but sitting across from somebody or on a Zoom with somebody and them learning who you are and talking to you about why you feel the way you feel, not necessarily physically, but mentally, and knowing that what you're doing might not be a bad thing. Being upset, being angry, being in pain, you're living with a disease that doesn't have a cure. That's hard. So, to be able to give somebody the ability to talk to somebody is critical. 

The other thing that I do talk a lot about is I'm extremely fortunate, and I don't take that for granted. I'm fortunate that I live in a city that has amazing doctors and hospitals, and I was able to get to the hospital as fast as I did, and they were able to put me on the lifesaving drugs as quickly as they could. I'm fortunate that I have an extremely loving family, both immediate and extended, who has been there for me from day one. I have a community. I have friends. I have a neighborhood. I have people in the PAH world that I've met. I'm extremely fortunate. I'm not isolated. Then, I'm fortunate that I have the means to have the best health insurance and to get whatever care I need and to be able to go around the country and speak and help people. I understand all of that. Most people aren't, and it is heartbreaking. I've met people along the way who aren't as fortunate and they're no less of a person than I am.

They are the most loving, caring people. I've met people who don't have anything who would give the shirt off their backs to help me being a fellow patient. So, when I meet these people and they don't have the same care and they don't have the same opportunities and they don't have the same support group, but then they barely get the medications to help them survive, but then they don't get this extra part that I have and they're not getting that same care, it's heartbreaking. I really do hope that this portion of therapy becomes widely accepted and is something that everybody has the opportunity to get one day. 

Thank you for listening. This is Eric Borstein, and I am aware that I'm rare.

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