Russell 00.00
Hi, and welcome back to Resilience Unravelled. And tonight, I'm talking, well, it's tonight for me, Julie, isn't it? But I don't know, we'll get to where you are in the world in a second, but it looks like it's very light where you are. But today, I'm talking to Julie Lewis. And I know that Julie is joining me from one of my favourite cities in the world.
Russell 00.20
So over to you, Julie. Where are you in the world?
Julie 00.25
Well, I'm in Seattle, Washington in the Pacific Northwest of the United States, and we’re known for our rain, but today we have blue skies, sunshine, and it's like 73 out there.
Russell 00.38
So, you can't ask for a better day here. That sounds fantastic. So, as I sit here being very envious of your fantastic weather and climate, then you better tell people, what it is that you do.
Julie 00.52
Well, I do a lot of things. I have worked most of my life in non-profit. And right now, post COVID, I just launched a book. But what I'm a storyteller, basically, in a public speaker. And I talk a lot about health care access and health care inequity and equity around the world, which ties into my story. Really, I had a pretty typical life going.
Julie 01.32
I had, you know, got married, had three kids. And then in 1990, my life took a pretty major pivot when I was diagnosed with HIV from a blood transfusion. I'd received six and a half years earlier. So, at that point, I was given, you know, three to five years to live, not optimistically.
Julie 01.53
It was kind of like, you might possibly live three to five years. And those last two years are going to be bad. So go do whatever you want to soon. And I was 32 and had a two-year-old, a four-year-old and a six-year-old. So, but ironically, I was a science health teacher at that point. Also had a brother who was HIV positive. He's a gay man. And we were all put on AZT and became incredibly sick. And so, we didn't tell people for a while. This was 1990.
Julie 02.31
And we lived in a very conservative area. And so, four years later, we told our six-year-old, drawing your personal information broadcast to the whole world, you just tell a six year old, you know, the quickest. And at that point, I joined a speaker's bureau for 10 years and advocated for people with HIV, talked about stigma and discrimination, and worked at the health department. And, you know, two thirds of my HIV positive friends died in that 10 years. And then we were living in Eastern Washington. And then 20 years ago, we moved to Seattle, where I, I had been working in a non-profit, most of my life, different ones. And when we moved to Seattle, I really needed a break from being the AIDS lady and working within advocacy. So I went to work for a construction non-profit that builds critical infrastructure for other organisations around the world. And that’s pretty much what I've been doing since. In 2014, my family launched the 30/30 project with the goal to build 30 health care facilities in areas that lacked health care access. And we are just finishing our last two right now. So, 10 years later, we're wrapping up that project.
Julie 03.55
The 30/30 project ended up building 30 health care facilities for 18 organizations in nine different countries.
Russell 04.09
Right.
Julie 04.11
So that wrapped up the funding in 2019. And then COVID hit. So, a couple of our buildings that delayed, but they're finally on track. And during that time, I, I wrote my memoir, starting with the phone call that in 1990, when my doctor told me that, that I might have HIV. So, so my life, you know, it's kind of been down this, this track of working on, you know, human rights issues really. So that's what I do. I, I go out and I, I tell stories and I talk, and we have conversations with people.
Russell 04.46
Okay. We’ve got tons to go on there. So, well, you mentioned it. So, let's go there. So, the phone call. Yeah, the phone call. So, I mean, what's the reaction to a phone call like that? Because a lot of people don't know that huge quantities of people that have HIV were actually through poor blood, blood transfusions. We had a same sort of problem over here as well. But what's it like to get effectively that sentence communicated?
Julie 05.17
Yeah, I think there's probably people out there have had a phone call like that for various reasons. Just a phone call that literally changes the track of your life. Well, that day, first of all, just the preface that I had been sick for a couple years, and would go to the doctor and nobody, you know, none of my tests that they did, nobody ran an HIV test, even though I wrote down, I clearly had a blood transfusion in 1984.
Julie 05.34
But, you know, the doctors didn't think I looked like someone who had AIDS, so they didn't like test for it. So when I got the phone call, and my doctor basically started out with you better sit down, which I did, and I'm like, this isn't going to be good.
Julie 06.07
And he said, one of the people who gave blood in your blood transfusion has AIDS now. So, you need to go get a test. But he said, you know, this was six and a half years ago. So, he could have, or she could have had that, you know, got infected in that time. But I knew immediately that it was going to be positive because I had just been sick with no good reason for a while. And we were literally putting our boxes in a U-Haul at that time to move to from Seattle to Spokane, a five-hour drive because my husband had gotten a new job. So yeah, there was so much that that phone call.
Julie 06.38
The hardest part about that phone call was when I realised, I had to get every person in my family tested for HIV.
Russell 06.40
Yeah, of course.
Julie 07.01
My other two kids were born after that. So, they were born to an HIV positive mom. And they had a 25 to 30% chance of being infected. And then I breastfed my daughter who was born when I got infected. So, she had a smaller chance. And then Scott, you know, we were pregnant for most of that time. And then he had a vasectomy. So, we never used precaution. So I just sort of assumed he would probably have been infected too.
Russell 07.40
Yeah.
Julie 07.46
So, we had to wait four days for those tests to come back for my family. And that was, I won't live through worse four days, I don't think.
Russell 07.48
No, I bet.
Julie 07.50
Yeah. So, the phone call was a lot. It was a lot, you know, to take in as a, you know young mom.
Russell 07.52
Yeah, absolutely. And so, I mean, you've got choices when you get a phone call like that don't you? You fall apart. Or you, you say, I'm going to fight, there's a lot written in the literature about how people fight a disease or an illness. Some people accept it and move forward with it. Well, I mean, it takes a little bit of time to determine what your strategy is going to be. So, what was yours? What was your plan to work with us?
Julie 08.17
Well, I had to move my family and I just, when I got the call that, you know, you're the only person that's infected in your family, I was like, good, I can handle this. Let's move. You know, I think my moment of reckoning was my first doctor appointment. When his first two questions were, first question was, do you have a living will? And like, I'm like, what 32-year-old has a living will? One is going to die soon, right? And then his next question was, what are your things in order?
Julie 08.49
And I was like, oh my gosh, I'm going to die. Like that was the first like real like, oh, wow. And then he gave me AZT and I've never been sicker in my life. Then the first three months I took AZT and my brother had been on AZT for a while. I didn't know my brother was infected with HIV until I told him because he hadn't told you. So, you know, so I was very sick.
Julie 09.19
I was trying to get my kids in new schools. I was, you know, it was awful. You know, it was awful. I'm not fearful of actually dying. I just never have been. I'm a person of faith. I was just looking at your two-year-old and thinking, oh my God, he's not going to remember me. You know, I have a really good looking, awesome husband. There's no way he’s not going to get remarried. And, you know, my grandkids are going to be calling some other woman grandma. I mean, it's a really weird, trippy thing to like to be faced with that. And so, and the other thing I would say is living your life, waiting to die is a horrible way to live.
Julie 10.08
It just, it's just bad. And I was given AZT with a beeper and or a, like a little alarm. It was a little thing that had the pills in it with an alarm and every four hours that alarm went off and you had to take that medicine, or you could become resistant to it. So, every four hours,
you're getting reminded you're dying, right? And I was just super depressed. I was just thinking about all the things I was going to miss with my kids and trying to be act normal around them. So, they didn't think something was wrong. You know, that went on for months. And then I got more used to the medicine, and it must have been six or eight months in really took that long.
Julie 10.54
And I woke up one day and I just thought, I don't feel any more dead today than I was yesterday. I just sort of decided at that moment that I was just going to live my life and that I wasn't going to think about, I was just going to assume I was going to keep living until I was like not living.
Julie 11.13
So, I would talk about the future like everyone else. And I just thought to myself, if talking about it is all that happens, that's better than nothing. You know, if I tell my kids I’m going to be a great grandma to their kids, that's better than never talking about it at all, right? So, I kind of dug myself deep into denial in a way in how I live my life while at the same time writing letters to my kids for their adult self. Because I'm like, if I die in three years, I'm not going to see Ryan get into kindergarten, you know, into the first grade. And all my kids are going to remember me as a little kid, you know, remember their mom.
Julie 11.53
So, I just started writing to them as their adult self. So, they would kind of know more about me. So, it's this weird place to live your life where you're just trying to be normal and be happy. And, you know, I don't want my kids to remember me sad. So, we had a lot of fun things we did. But at the same time, you kind of have to deal with preparing that maybe we'll die. It's a horrible way to live. But it's like lots of people have been put in that situation. And the thing is, we're often put in that situation at the end of our lives. And actually, it's quite interesting how little we talk about death and preparedness for death and thinking about it. I mean, there are films on the television about it, you know, which are anomalous, because actually this is so rare. And it’s part of the human condition that we don't really think about it at all.
Russell 12.49
So the fact that you're, you know, as a young woman, you're sort of forced with a very young family to start thinking about this, it's quite interesting psychologically, I think. I wonder how much has contributed to improving your life successes and chances. It's quite interesting, isn't it?
Julie 13.14
Yeah, it is. And, you know, the first four years, the extra layer of that is we were in the closet. I did not want people to know I had HIV because there was so much stigma. And I didn't want my kids not to be able to play at someone's house because there was fear. I didn't, you know, there, people had a lot of weird ideas about HIV. And even though there was hard data about it at that point, you know, there was a lot of stigma. There was a lot of, you know, this is God's will for gay people, like just weird shit. Sorry to say that. But weird stuff, you know, around the disease. And I just didn't want, my kids were so little, I just didn't want them to experience any of that.
Julie 14.01
So we were, I was a really good liar. Like, you know, keeping a family secret is almost as hard as waiting to die. You know, it leaves a lot of stress and pressure. But I got good at making excuses for why I wasn't at Steph and why I didn't feel well. Just to protect my kids.
Russell 14.21
And of course, it's a situation, I guess, that you're never cured of it. It's about how you live with it, is it? What's that? Is it a continuing prognosis that it's about how you live with the condition now? Because no one sort of gets cured, do they?
Julie 14.34
No, they don't, not at this point, although the treatments are really amazing now. I mean, what has changed is that someone who is diagnosed with HIV now should have a normal lifespan. And if they're on the medications, well, if they are on the medications, they should have a normal lifespan. Plus, if they're, the amount of virus in their body is undetectable, which doesn't mean it's gone, it just means the test can’t detect it. They actually can't transmit the virus. So, a whole new day. So that's new. What isn’t new is there's still a ton of stigma and discrimination. And I would say it's even gotten worse with the last political season we've had in our country. So yeah. Well, all marginalised. communities have become increasingly marginalised, every single one of them.
Russell 14.53
So, what was the motivation to sort of look at the, of 30-30 in the healthcare space? Because I'm sort of thinking now that you're seeing the person that once you set your mind to something, that it's going to be it's going to be some form of success. So, I was interested to think why you thought of the initial process.
Julie 15.26
Well, a lot of things just kind of collided for the 30-30 project. One, I’m a health teacher. I work in public health for years at the health department. I used to be a high school health teacher, science teacher. But then I was working for this non-profit that builds critical infrastructure in poor areas for organisations working on healthcare education and community development. So I was vetting all their projects and recommending ones that they built for.
Julie 15.56
And then in 2014, I was my 30-year anniversary of surviving HIV. And my kids who are now adults were like, mom, we have to do something to celebrate. And I was like, that feels really awkward because so many of my friends died. Like I don't, like I can celebrate, but I said to them, if we could figure out a project that we could do in honour of them, like pay it forward kind of good thing, that would feel good. And then I suggested my big idea was that we build one healthcare facility somewhere in the world. We raise the money to do that. We don't actually build things, the non-profit construction for change builds for the 30-30 project.
Julie 16.46
So anyway, I was like, let’s build one, let's raise money to build one healthcare facility. And I had a couple of ideas of who to build for because that was my job. And Ryan, my son Ryan is a music producer, and he was having a lot of success at the time. And he just looked at me and goes, mom, we can't just build one, you live 30 years, we need to build 30. And I just looked at him, my gosh, 30 is so many more than one, Ryan. But he talked me into that. And I had a lot of support from his group at the time, Macklemore and Ryan Lewis. They helped us raise the money. And so, we had a platform in that moment of our life that was way bigger than just one family. And so, yeah, he made me a cool video and we launched this project on national television, got on Anderson Cooper and the Today Show, tons of stuff, you know. And we did an Indiegogo campaign and we funded like five clinics in a short period of time. And then he went back to work, and everyone went back to work for regular jobs. And all of a sudden, it was just me with this humongous goal.
Julie 18.32
And I mean, I had a few nights when I would just sweat and think, what in the world did I just tell all of America is going to do? And so, from that point on, it was a lot, it was slow going.
Julie 18.45
But I'm a public speaker. I had, I was on that speaker's bureau for 10 years, like I had a lot of speaking experience. So, I just started speaking to anyone and everyone about this idea that healthcare spaces could create healthcare access. And eventually, we had enough success that we hired a couple of staff. And one person we hired was a person that did measurement and evaluation, which was our smartest move ever, because instead of saying this clinic is in a cash manner area of like 20,000 people, we actually said, this many people are walking into the clinic, this many people are getting HIV tests, this many people are pregnant, this many people had babies, you know, like we actually had numbers. Once we could prove that healthcare spaces were creating healthcare access, the last two years of funding came in pretty quickly. And we got a lot of corporate sponsors.
Julie 19.53
So, and then COVID hit. We're building in, you know, nine different countries, and that's a challenge, you know, so it was a little slower just to finish. Which countries? Which sort of countries? Which sort of projects? Just to give us a know just a better than overview. We did mostly clinics and maternity wards, but we had, we had a research centre, like we had a lot of little one offs too that were just really interesting. We were primarily in African countries. So, Uganda, Kenya, Malawi, Togo, South Africa, probably leaving out one or two. And then we're in Bolivia. And we did several projects in the United States. And then in Puerto Rico after the hurricanes hit, we did a lot of solar projects, because their power grids really bad.
Julie 20.39
So, we worked with the Clinton Global Initiative on those. We partnered with a lot of organisations. And so obviously that led to writing a book, because obviously sitting around during COVID doing nothing. I don't see that sort of person. I started writing the book before COVID.
20.57 Julie
But when COVID hit, I felt like a very vulnerable person, you know, with compromised immune system. So, my writing kind of went into hyper speed, because I was like, Oh my gosh, I literally could die like the epicentre in the United States for COVID was Seattle. So, I just started writing as fast as I could. Of course, I'm a science teacher. So, I got all the facts in there, but you know, it wasn't written very well. But I just kept thinking, if I happen to die this COVID thing, my husband's brother died of COVID. I'm like, it was in our fate. I was like, if I happen to die, at least I'll have it written down and someone who's like a writer can rewrite it.
Julie 21.36
But I really didn't want these stories, especially with my friends who had died to be lost because so many of them, if you Google them, they don't exist because their families did not want people to know they didn't have funerals, they didn't have obituaries. And I just wanted some of their lives to be and legacy to be memorialized. And that's the middle part of the book is a lot about that. The books in three sections. So anyway, so I just was writing like, you know, I ended up with like a book that's like, you know, a C plus. But then I brought in my co-author who's brilliant, who I've worked with for years. We've known each other for 20 years. And we rewrote the book, we cut it a third, we rewrote it again, we cut it another third, like, you know, I had no idea the process of writing a book. It's not a slope. I mean,
it's not a fast process.
Julie 22.06
But we're really happy with the final product. I think it's like, you know, I mean, we have 18 five-star reviews on Amazon right now, which has gone beyond. I was said to my husband last night, we, it's not just people who know and love me anymore, like total strangers are giving us really good reviews.
Russell 22.54
Yeah. No, it's just, as you were talking, I just looking on, I was just looking on Amazon UK. And it's, you know, great, all five-star reviews, great reviews. So, it's great. So, so basically, we can find it on Amazon. Where else can we find it? And you better tell us what it's called, because I'm not sure you've mentioned the name of the book.
Julie 23.29
It's Still Positive here. It is on almost all online books, sales places like Barnes and Noble, Amazon. In the US we’re in a lot of bookstores. I don't know that we've gotten popular enough to be like international. I'm hoping for that, you know, but yeah. we have a publisher. It's not independently published. So they're really good at getting it out there.
Russell 23.43
Yeah, brilliant. Well, I've seen it on Amazon UK. So, it's great. And I’m sure it's another place as well. Are you going to do an audible version?
Julie 23.57
We have an audible version. I love our audio book reader. I would kind of laugh because did you see the movie Sully about Sully Sullenberger? So, he said once that Tom Hanks was a better Sully Sullenberger than he was. I feel like that about my audio book reader. I'm like,
she's done 300 books. She's an actress and I listened to her and I'm like, she’s a better Julie Lewis than me. She's so good at what she does. So yeah, I, I, it just came out on audible last week.
Russell 24.13
So brilliant. And what a brilliant title as well. It's very clever. Great pun. I love it. Well, look, thank you for spending time with us today. It's a remarkable story and, you know, absolutely amazing. So, thank you. It's been great. The books called Still Positive. It's available everywhere. And there's a website, StillPositive.com,
Julie 24.51
We're also on Instagram at Still Positive Book. That's where we do most of our updated news.
Russell 24.54
So fantastic. So, there you are. Find out more and buy the book. And maybe Julie can do another 30 hospitals quite soon. Brilliant. Thanks for spending time with us today.
Julie 25.01
Thank you, Russell.
Russell 25.04
You take care.