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I'm Aware That I'm Rare: the phaware® podcast

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Wolf Haley - phaware® interview 468

May 14, 2024

Haley (aka @Wolf Haley), who was diagnosed with pulmonary hypertension (PH) at 18 years old, shares her journey with the disease and how she has found healing and purpose through art and advocacy. Haley discovered her passion for art as a form of therapy, using watercolor to express her thoughts and emotions about living with PH. Haley also works as a TikTok manager for a nonprofit organization and has become involved in advocacy work, using her personal experiences to advocate for healthcare bills and share her story with legislators. She graduates from the community health worker program at UNM this month, and plans to continue studies in radiology technology.

I'm Haley. I was diagnosed with PH in 2010, a fresh 18-year-old. I'm from Texas, but I relocated to New Mexico, which truly worked in my favor, because now I'm a patient at one of the specialty clinics out here, UNMH.

When I transferred to UNMH, I was a pretty angry non-adherent patient. I just hadn't been well-educated, honestly. I hadn't been taught about the disease process. Dr. Melendres was the first doctor to tell me that this was a progressive disease. They had a different approach. They had a social worker and a whole team of people that were geared to help me deal with everything beyond PH.

I was really resistant to trying new therapies, especially the pump. They were begging me, but then also respecting my decision as a patient, because they were trying to get me to a place of acceptance. I survived being put on the pump. It was an emergency admin. I can't believe I lived through that, because I was in really bad shape. But I caved and got on the pump. They totally, completely transformed me as a patient, that medical team. So, University of New Mexico is wonderful. At least, wonderful for me. They worked really well for me.

I was put on the pump seven years ago, but I've been off two years. So, I was on the pump for a little over five years. Honestly, I was totally prepared to be on it for the rest of my life, because that's what we knew at the time. One day I went in for an appointment and they said, "Hey, we have a new therapy we think you should try, because line infection risks and whatnot." My numbers had come down. I was doing really, really good, very consistent with my therapies and whatnot. It looked like my body was responding well enough to take the risk of moving onto an oral therapy. Because it's a calculated risk. Everything's a hypothesis, and they don't want to risk something if your body doesn't look like it's ready to do that. Mine was, and we transferred to an oral therapy. It was an ICU stay.

So, I've been on that. Did my body absolutely love it? No, I mean, the pump's super strong. Now, we've been adjusting therapies around that and participating in clinical trials. I'm still doing well. I'm still stable, so I hope we can keep going down that route. But I know if things progress, whatever, I'm totally willing to go back to the pump. I'm familiar with it, and it is what it is.

I moved to where I am now, a super isolated town in New Mexico. I just had really nothing going on. I had been on the pump for almost a year. I was processing really heavy, awful things. I had a patient friend pass away. I had a massive panic attack, actually. I thought I was having a PH episode, because my heart rate and blood pressure was so high. It was a panic attack. I started going to therapy. I would come home and I was doodling. I was drawing different things, different ideas I had.

I always enjoyed art, but I never knew much about it beyond that, never educated in it. I started doodling. I found a watercolor palette in my house. It was really old and awful. I started having fun with that and getting into watercolor. The first one I ever did, I had a couple of doodles, but the first one that really launched everything I did, sitting in the chair with the pump. Then, I had a sign behind it that said, "There is no normal." Then I would start heavy phrases that I couldn't get out of my mind, "Do I have worth?" Or, "Be present," and different things like that. I would start drawing them. It was like I was putting thoughts I had or feelings I had in a visual form. It was really subconscious, basically.

Then, I realized what I was doing way later. My therapist realized it too, and so now she encourages me. Now, I know that it's therapeutic, but that's how it starts. It starts as a phrase or something that's bothering me and I'm like, "What does this look like?" Because it's a big concept, usually. Like mortality, I have a painting about that. I literally said to my therapist in a session, "I scare people because I'm so comfortable with death. It has its own place in my house, I feel like." She's like, "Is that your next painting?" I'm like, "Actually, yes." It's concepts like that that I'm working on. It totally happened subconsciously. I'm glad, because now I don't think I'm linear enough to write as well anymore. I think art is a little bit healthier for me.

I started sharing it on social media. I didn't really care about the reaction as much. It's so wild. People who are not patients do not have a good response to it, quite honestly. Most of the pictures are nudity, which I know is a lot for people, but I never knew why I was doing that. Then, I had a friend go, "I think you're just showing the vulnerability. It's just the ultimate vulnerability of who you are as a person and how you are in these medical settings." We have a cloth draped over us, and that's about it, our hospital gowns. But people who are not PH patients, nine out of 10, or unfortunately who are just healthy beings, do not have a good response to it. They don't understand it. PH patients, those are the people who like my artwork. They love it. They connect with it. They share it. They reach out because of it and they purchase the pieces.

I had a patient who bought two pieces from me, and she has a really intense story about her diagnosis and things she went through. I could not be happier that she bought the piece she bought, because it was so personal and emotional for me. Then, to know her story and why she wanted that particular piece was overwhelming. I've had other people who are not PH patients, who are just chronic patients or healthcare providers, so that's social workers, nurses, healthcare providers and patients. Those are the people who appreciate my work, which makes me feel good.

I feel like I am going through phases. So, I feel like those are my introductory pieces of when I started my work and I was introducing myself and what I was dealing with and working through. It's a lot of watercolor and being on the pump and different things. So, I compiled some words, because they are individual puzzle pieces, and they're fine on their own, but every time I've hung them all together and displayed them at a gallery or just my studio in my house, people are like, "Oh my God." Seeing it all together, it's like puzzle pieces coming together. It's powerful. A friend who's a professional artist was like, "This needs to be in a book. You're a storyteller with these pieces."

So, I took my early pieces, the watercolor and what I had to say about it and how I got to this point in my life and my work, and I put it all into a little coffee table book and just did the beginning. So, I called those first set of pieces that are in the book, There Is No Normal, because it was introductory of there is no normal. This is my normal. We all have our different normals that exist. Now, all the pieces that I'm currently working on, I call it, Transition, because I literally spent the last two years working on transitioning off the pump, keeping my health away from the pump, and then also missing the pump. Sometimes, I still hear it beep or sometimes I get up and I still think it's attached to me, and I've been off it two years now.

So, it's been a process. Also, learning how to trust my body not having the pump. I didn't realize the emotional impact it would have of learning how to trust my new therapies, because I saw what the pump did for me and how it did keep me alive. I had such trust in it. So now, I'm developing a whole new trust. So now, I'm painting about that. Maybe I'll compile all my newest paintings, Transitions, into another book. So, it's like they're their own categories or series.

I've always been an advocate. I saw that this nonprofit was hiring, and I applied. As we all know, being on SSDI, I have strict income limitations. They were like, "Oh my God, that's incredibly low." It's very hard to find a job on SSDI. So, they literally created a job for me managing their TikTok, because I do TikTok on my own. They were like, "Hey, you should do TikTok for us, and we can match your income limitations." It's great. I literally just got involved, because I needed a job and this felt like a good fit. I just tried my best and they actually hired me.

I've learned how to argue professionally, because you're at the Capitol. And during legislative session, which is two months long in New Mexico. You're at the Capitol and listening to people argue these bills. You're learning different talking points. You're learning how to go about things. So, it's been really educational in that way. I'm learning about different bills, like last year, the Safe Staffing Act for nurses in New Mexico. It died, unfortunately. So, that's a bill I plan to get behind next legislative session.

It's totally branched off into other things. I've been able to argue for abortion bills, which I know it sounds super inflammatory, but that goes hand in hand with women's healthcare and PAH. So, arguing for that statewide and keeping that here in New Mexico is really important to me. I've been able to tell my story to our audiences legislatively. So yeah, it's been really cool. I've learned a lot. Just seeing how all of it works, it's very overwhelming, but in a positive way. It keeps me fired up and channels my anger into something productive, I think.

We didn't politicize our healthcare, unfortunately. That's just what we're living in. Whether we realize it or not, the decisions they're making do impact us. They trickle down. Whether that's abortion or prescription medications and all the healthcare bills that affect our providers, the Safe Staffing Act for nurses, there's all kinds of stuff. That impacts you as a patient and especially a specialty patient. So, anything that you can do. Know your legislative season in your state. When does legislative session begin? When does it end? Is it year round? Because some states are year round. Who are your representatives? Who can you introduce yourself to? The Capitol is your building. That's the people's house. You are allowed to show up. Know the schedule. They usually have days where they're focused on one topic. Yesterday, for us, was public health day, so I was down there.

So, just go down there, know your representatives. Figure out where their offices are. Agree to sit down with them, see if they have time to talk with you. It feels like a really big separate world, and it will feel that way, but that's where you belong. That's where advocacy happens. So yeah, don't be afraid of it. It's very intimidating. I think it's meant to be that way, but no, don't be intimidated. I say go in there and blow the doors off the hinges. Professionally, and not literally.

One other important avenue that I took as far as advocacy was writing for the Pulmonary Medical Journal about my experience being a non-adherent, angry, non-compliant patient. Just telling the truth about that and the process of that and how accepting my illness and working with my medical team, becoming an active participant and my healthcare saved my life. I literally wrote it when I wrote my first draft in ICU, being transitioned off the pump. I took my keyboard and just stayed busy and got it done. It was so wild having medical writers, because I write from an emotional point of view. Obviously, I'm an emotional being. Writing from that stance and then having them go in and then fix everything to medical and showing me how to do that, that was truly wild. Then, going through the whole process, editing process for the medical journal, having it peer-reviewed. I was in the hospital in July and then it was published and actually accepted in January. So, it was a process, but I loved it. It was really, really cool. So, I enjoyed that.

I think all of this has been stepping stones and unveiling who I actually am, who I've needed to become. I'm constantly evolving. Right now, I'm in school. Hopefully by a year from now I'll be in radiology school. Then, the next step after that is the cath lab, which is wild to me to be shooting for that, but I really enjoy the cath lab. So, I think this was all setting me up. I think I needed to harness the anger that I felt as a newly diagnosed patient, as just a lost patient. I needed to work with that. My team did that with me. Therapy has done that. Art has done that. Now, legislation and advocacy work has done that. So, I feel like now I can actually use it productively instead of using it to actively harm myself, which is what I was doing a very long time ago. So, hopefully I'll keep evolving.

I'm Haley, and I'm aware that I'm rare.

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