Julie Duffy

JULIE DUFFY KNOWS HOW TO ROCK. (NO, REALLY, SHE’S A TOUR MANAGER FOR ROCK BANDS).  HER JOB IS TO MANAGE OPERATIONS. WHEN SHE FELL INTO A COMA, HER FRIENDS AND THE BANDS STEPPED IN TO MANAGE HER.

Julie: I do a lot of “pre-Julie’s” and “post-Julie’s.” Pre-Julie this—pre what happened to me. I was already deep in the ocean. I was already up on Mars. Post-Julie is a little more trepidatious. Post-Julie is a little bit more non-skydiver. More “Let’s go up in the plane, but I’m not going to jump this time.” More “I’ll go in the ocean, but I’m not going to surf.” I just have to be a little more careful. I think all of this—all of what happened to me—taught me to be less  “Fuck it let’s go, let’s do this.”

Editor’s Note: We spoke to Julie again before print and she says she’s feeling better and will actually “jump out of that fucking plane again.”

Living Crue: You were a tour manager?

I am a tour manager.

Sorry, you’re right! And you’ve toured with?

John Mellancamp, Christina Aguilera, Van Halen, Roger Waters, Aerosmith, El Divo, Maroon 5, Kelly Clarkson, Brad Paisley, Counting Crows, Stone Temple Pilots, Linkin Park, Peppa Pig. Who am I missing? I am also a tour accountant and assistant tour manager. But it all started when I was 18 at WBCN [radio]. At BCN, my mentors, Oedipus, Carter and Steven, treated me as if I were an equal. I was never just an intern and because of that internship I got an interview with Collins Management, who handle Aerosmith. I got that Assistant position in 1993 working with Tim, Keith, and incredible support staff. Aerosmith was the biggest game in town. Biggest game in the world at that point. It was good for me to see how a big machine like Aerosmith rolled. It was good to be working for men of power.

I was also in the Boston music scene then. In the hardcore scene, which was a big family community. I just knew from a young age that I was going to be in the music business, there was no Plan B. While I was working for Collins/Aerosmith I got to know Marcia Hrichison who ran the entertainment division of Westwood One. She was my first real influential woman in power that I looked up too. She offered me a position interviewing artists for syndicated radio shows, and it was time for a change so I said, “Hell ya,” even though I had never interviewed anyone in my life! I moved out to Hollywood and while I was working at WW1, I realized I really wasn’t very good at interviewing, I didn’t like asking the questions that really needed to be asked that made the artist uncomfortable, and there were many people there that were so much better. But Marcia took me under her wing and I actually got promoted to director of talent where I was responsible for booking the interviews, something I was much better at. I stayed there for 8 years and just lived the LA life. I was a punk rock girl, never the beautiful blonde. I had blue hair and wasn’t a size 0. Then it was time for a change, I moved to Manhattan and started working at Columbia Records with Paul Rappaport as the director of broadcasting. When Napster hit, all the labels were like, “Yeah, don’t even worry about it; it’s not a problem.” And it was a problem. And I got laid off.

But before that happened, I had done a session with John Mellencamp, and part of my job was to record acoustic versions of songs for the morning commute shows ... We were recording an acoustic version of “Jack and Diane” with John and the whole crew was there. Somehow the tour manager, Harry Sandler, another mentor of mine, called me. “We think you’ll be great on the road. Wanna go?” I’m broke. I can’t afford my apartment. So I went on the road. I thought I’d be back in 2 weeks. It’s been 20 years and I never looked back.

What does it feel like to be out there on the road? What’s the draw?

I love the road. You work your ass off all day, and then the next morning is the next round. You load in and 15 hours later there’s another show. There’s this high to the process and it’s just amazing energy. You’re on the bus, and you’re drinking your Solo cup of wine, eating Oreos. Maybe you’d have a PB&J or pizza that’s been sitting around for 3 hours—so glamorous! But you think, “We fucking did that!”

I don’t touch the stage. I know where I belong. It’s important to know your place. Touring is the high, it’s the energy. I’m still like a little kid. I get my tour schedule and I’m so excited. The Crows are doing Tel Aviv and Europe this fall. Next year is Australia, South Africa, more Europe, and the U.S. And I’m so excited, even though I’ve already done it 10 times. Every single time the vibe is different.

At one point after being out on Aersomith, I realized that I wanted to learn the money side of touring … I trained as a Live Nation tour accountant and there were all these tours heading out in 2006 and I was allowed to pick which one I wanted. I glanced at all of them and I saw Counting Crows with Goo Goo Dolls. When I lived in Hollywood, one of my roommates was Mike, the drummer in Goo Goos so I said, “Heck ya, I’ll take that!” Once that tour was over, Crows tour manager Tom Mullally asked me to join their team as their tour accountant /assistant tour manager … ummm YES!  And I’ve been with this incredible band/crew ever since. The minute I was in the hospital, the band, Tom and the crew rallied. I am beyond grateful for all of them.

This is not a job to do when you hate it. It’s a lifestyle. You are living on a bus. With 9 guys. It’s gotten better and better with more women out there touring. When I first started, it seemed like most women did catering, wardrobe, and production assistance and there’s nothing wrong with that, super important jobs but I always wondered, why aren’t there [women in] audio? Why aren’t there [women in] video? Now there are more women tour managers,  tour accountants, audio, lighting, video … and I think it’s awesome.

Do you feel like you opened the door for that?

I absolutely didn’t….there were incredible women out there way before me. When I started there were [women like] Liz Mahon. Liz Mahon was on John Mellencamp and is now with Billy Joel. When I first came to Mellencamp, I didn’t know shit. I was put out as an assistant tour manager. I felt that people automatically resented me. I didn’t know what the inside of a bus looked like; I didn’t know where to put my luggage. I didn’t pay my “road” dues. But eventually people realized I’m not a bitch. They helped me out and I think Liz opened the door for me to see that this is a great way to make a living and I also had an incredible tour manager, Bob Quandt, who was very patient with me. Women, we’re a different breed out there, you know? I love it when women come out [on the road]. I try to hire women, because if they really want to be on the road, they’re special. They’re kick ass.

COVID hits. We all go back inside. And then one day you have a sore throat.

It was March 13th. I was flying out to Peppa [Pig] and my boyfriend, Scott, was flying out to Miranda [Lambert]. Our schedules weren’t going to mix again for another 7, 8 months. Then COVID hit. We immediately went into lockdown and I stayed in Tennessee. I went back to my home in Massachusetts in July and started volunteering at our local food bank, Wheat Community Cafe in Clinton. I needed to do something. We made 200 lunches a day and dinner for 60 every night. Normally, you would just volunteer for one day, but I love to cook, and my friend Shelley McClellan manages the food department. I was doing that from August to December. December 18th, it was a Tuesday, I had a wicked headache. I had to stop volunteering that day—I didn’t realize that feeling ill meant shutting down and 200 people didn’t get lunch because we didn’t know if I had COVID. I felt horrible. I immediately went and got a COVID test that day. But then I got a sore throat. But I’m prone to sore throats. I’m prone to pneumonia. I’m prone to lung stuff, throat stuff. I had thyroid cancer. So I didn’t think anything of it. So I got a COVID test and a strep test. The strep came back negative.

The next morning I lost my voice, but again, that’s not unusual for me. I hadn’t gotten my COVID test back yet, so I just kind of laid low. That Thursday, a friend brought me to Clinton hospital. The doctors gave me steroid shots and sent me back home. Next morning, I have an appointment with my primary [doctor], the incredible Dr. Valerie Moreland. She took one look at me—gray and hunched over—and she said, “This (pointing at my entire body) is not good, you’re going to the emergency room.” And I debated with her about what emergency room because at this point, I’m still not overly concerned. Suzanne Frisch, my lifelong best friend and ironically my health care proxy, drove me to the Clinton Hospital and it’s all a blur. I don’t remember much. Clinton sent me to Worcester hospital immediately in an ambulance. Suzanne wasn’t allowed to see me even though she is my Health Care Proxy; no one knows what’s going on. I have no memory of that ambulance ride or being placed in my room at SICU/Umass Memorial Hospital.

I do remember a doctor came in and said, “You have a hole in your esophagus. Are you in an abusive relationship? No one just gets a hole in their esophagus. So, are you in an abusive relationship? Do you do a lot of drugs?” And I said “No, and I don’t do drugs.” I found out later that he called Suzanne and asked her if I was lying.  I’m sure there was more, but I don’t remember. I went back and traced my steps on my texts from the morning of December 19th. The last text I sent was at 9:18 a.m. to Scott and Suzanne, and I said “I’m scared. I’m going in for surgery.” Then I remember [being wheeled onto] the elevator. I looked up and I asked the doctors and nurses, “Am I going to die?”

And, um, 10 minutes later, I died.

Months later, I was speaking with the anesthesiologist whose job it was to prep me for surgery, and he told me that he looked up to God and asked, “Am I bringing this person back to life?” He told me, “I felt it in my heart to save you. We fought and we brought you back and we stabilized you. And then we put you in surgery.” And during surgery is when they discovered this descending necrotizing mediastinitis. I don’t know a lot about it, to be quite honest. I know it’s extremely rare. I’m sure there’s more to it, I just don’t know. All I know is what the nurses told me: That they did everything they could during surgery to save me. They put me in a coma and said goodbye to me. And they told me it was up to me after that.

Then, the medication they gave to save my life caused sepsis shock. That infected my fingers and my toes. When I came out of the coma, [my fingers and toes] were black. Everything was hard as a rock.

They gave me drugs to erase my memory. I didn’t know it was a thing. That’s superman shit. It was so traumatic and so horrible they gave me drugs so I wouldn’t remember anything. I was in a coma for almost a month.

Suzanne found a loophole—because she’s a fucking badass lawyer—to let me have a visitor. Nobody else is allowed to have visitors in the SICU. So they chose Scott. He would work all day and then come in every day for hours. He played all my favorite music. He had everybody call me and he would hold the phone up to my ear. He read books to me. It’s winter and the boy is in shorts and flip-flops.

I came out of the coma weighing over 200 pounds, because of organ failure. I remember having dreams—and now I think they weren’t dreams—that I couldn’t lift my arms and legs. And I had dreams of people holding me down. I woke up, I had Suzanne to my left, Scott to my right, and I remember seeing such joy and relief in their expressions. Suzanne asked me if I knew what the date was, and I said “March 2020.” I don’t know why I said March 2020. It was 2021. And I was just like, “What the fuck?” but I couldn’t talk. Trach in my throat, tubes everywhere. It was all fluid from my kidneys failing. And I remember thinking. “What the fuck, God?

I was told there was this one doctor who sat down with Scott and Suzanne and said, “She’s going to be in a nursing home. She’s never going to eat. She might not ever speak.” They told him that I was a fighter. He also came in and told me I’d be on dialysis for the rest of my life. And I just remember looking at him and being like, “Fuck you. You don’t know me. You’ve no idea who I am.” And I think being a roadie—and I know a lot of roadies hate that term, “roadie.” I like the term … I just dug deep. And I was like. “All right, let’s go, let’s go.”

Scott would come to my room every single day. I couldn’t communicate. You know, no one can read lips. And I had a catheter and I had a sponge bath every day for 5 1/2 months. Talk about letting your humility, your ego, go. I mean you gotta let it go. But I think it’s being a roadie. You dig deep. There was no, “woe is me.” There was never the moment of “Why did this happen to me?” But what was really important to me was to know I didn’t cause it. Still to this day, I question it. They assured me 100% I didn’t do this. The infectious disease team felt that it was in my body for a long time and it was just growing. No one was healthier than I was. Like, I was a smoothie, wheat grass, boring girl. No carbs. A little bit of wine [laughing].

This group of girls that I surround myself with in Clinton, I mean, I’ve known Suzanne since I was 2. This is an amazing group of girls who, to this day, still support each other. And listen, when I left to go to college, I could’ve never looked back. But there’s something about these women, this town. I always came back, and I always kept in touch. I work really hard to cultivate these friendships, and I have them all over the world. Because even when I’m on the road, part of my excitement is that I get to see so-and-so in New Zealand or I get to see GB in Australia, etc. I don’t know a lot of people like us that have the core of like 10 girls. And my touring girls. And my LA girls. Tennessee girls.

And I knew I wasn’t going to have a normal relationship. I mean it takes a really strong man to be like, “Oh, ok, you’re going to be gone for 9 months, and you’re going to be on a bus with 10 guys? Ok, have fun.” But Scott gets it, because he does it, and you either trust or you don’t. Period. But these women! You have to have your girls.

I’m going to single out Suzanne. She is your health care proxy?

Here’s a woman who has 4 kids, she’s a lawyer, an amazing wife, she’s a volunteer, an incredible person. When I made her my healthcare proxy, we took it seriously but we also joked about it—we thought we’d be 80 in rocking chairs. I didn’t want a family member to be [health care proxy] because I truly thought it wouldn’t be needed until we were so much older and Suzanne would be there as my friend. I understood it was a huge issue with my family in the beginning because they didn’t know Suzanne was in that position, They didn’t understand why she was. Everybody in my family knows her, but I can only imagine how hard it was for my parents to not be in total control and I get that … again, this was a decision made by me when I was a very healthy 49 year old. But Suzanne did, continues to do, an incredible job. Soon my family realized the situation was in control. She was in touch with the hospital every day. Every night she would send out an email and assign the core girls each to send out emails so nobody was left wondering what was going on ... so, yeah, she’s a fucking rock star. Not only did she take care of all my medical stuff, she and my friend Square hacked all my accounts, took over all my finances, and paid all my bills. Because who’s going to pay my mortgage? Who’s going to pay my HOA? The girls also formed “Duff Inc.” which was Suzanne, Square, Jacqueline and Patt. All lifelong Clinton friends. They spent endless hours speaking to friends from Boston, touring, LA, everywhere, keeping people updated. They’d get together every 2 weeks. I think, a lot of alcohol was consumed and they would just support Suz and be her sounding board, and I’ll be forever grateful for that. They also set up an [online fundraiser] for me to cover my medical bills.

My family’s issues I know from the beginning came from me being an extremely private person. And also, in my business, you don’t want people to know you’re sick. When I had cancer, I never told anybody in my business, except obviously I was on tour with Stone Temple Pilots when I got diagnosed, so clearly they knew. But I didn’t put anything on [social media]. I didn’t put it out there because you don’t want people to think you’re sick. Our business is small. So I completely understand why my family at first didn’t want the fundraiser, but thank God my friends did it!

As I became clearer, I started to really worry. I was worrying about work. I have to work. I’m a worker. I’ve been working since I was a kid. And I’ve got Scott brushing my hair and being like, “Babe, just live. Now, stop worrying.” ... I’ve never asked anyone for help. I’m very proud. So, I was honored and thankful. Without help with my medical bills, I could probably have lost my home.

You were all of a sudden on the receiving end.

It was incredible. I’m still thanking people. I am still sending notes. I mean, there were over 1,000 people who donated! My friend Bill Bracken did a live Facebook concert! Then my friends Sean Mcnally and Michael Creamer organized a benefit concert at the Paradise in Boston. Oh my God, that was probably one of the most incredible nights in my life. Incredible to have all these artists fly from all over the U.S. and Europe and get together. It was overwhelming. I’m still blown away and I just feel sometimes, like, I don’t know … that I don’t deserve it. I don’t know where that comes from. I really didn’t do anything. It’s not like I’ve cured cancer.

But you obviously did something for these people.

I was just a part of the Boston music scene. Being part of it is making dinner for someone because they didn’t have money or having the band guys over because they got paid in beer. I mean, it’s just what we do for each other.

Not everyone thinks that.

But they should.

How many operations did you have?

Over 20 operations, most of them I don’t remember. I remember the amputations and I remember the follow-up amputations when I got home from the hospital. But I don’t remember half of it. All I know is that I’ve got permanent scars all over and I can’t feel parts of my body anymore.

I couldn’t talk, eat, drink, anything for 4 1/2 months. I remember looking at people who had water and I’d be so jealous. Let me tell you something: don’t ever take water for granted ever in your life. I had to learn how to walk. I had to learn how to go to the bathroom. I had to learn how to dress myself. I had to learn how to write. I had no muscle memory. I worked out obsessively before I got sick. I started as if I was a baby. I couldn’t sit up. I couldn’t roll over. I couldn’t. I couldn’t do anything. I remember thinking “Jesus Christ if I had known this was going to happen, I would’ve eaten all the pizza.” Just to sit up took a month. ... This one nurse, Barbara, was hard on me but in a good way, and I’ll never forget her. When I was being transferred to Spaulding after 3 months in SICU she leaned in—I thought she was going to give me a big hug—but she said, “Get the fuck up or you’re going die.” And she was right.

Because of COVID, we weren’t allowed to be out of our rooms. We were locked down. I never left my room unless I was having surgery or Barbara snuck me out for a little escape! I was surrounded by COVID cases. The nurses would come in crying because they just lost a patient. Nurses are incredible. CNA’s? Hello! The most unsung heroes of the world. They would come hang out ... So, every day I’d think to myself get up or you’re gonna die. I threw up every single day for probably 9 months, 3 or 4 times a day. They couldn’t figure out what was wrong. Walking was hard because I was so weak. I went from 200 pounds to 124. I didn’t even weighed 124 pounds in junior high. I was fragile and I was weak and I was bony. I wouldn’t look in the mirror. It was horrible.

I couldn’t look at my body ... I would see the clumps [of hair falling out] and I was like, “Great, God, now I’m going to lose my hair, too.” But it doesn’t matter ... I was just kinda like, “God, what’s next? I’ve lost my fingers, my toes, and my body, and now my hair. What’s next?”

Once I went to Spaulding, I could have more guests, but just one a day. My mom and dad came to visit once a week. At SICU, they were allowed in a couple times. No one wants to see their daughter like that, you know? I know they would have moved into my room if they could. And my family was incredible, talk about rallying! My Aunt Chris would come in and brush my hair and give me the most amazing massages. My Aunt Jeannie flew in from Dallas and just made me feel like everything is going to be ok. My cousin Kelly made me laugh. The list is endless. All of these moments meant everything to me.

Usually people came in 3:00 p.m. to 8:00 p.m. and I was lucky if I could last 45 minutes or an hour. And I always felt like I had to be “on.” I still couldn’t speak and I was still throwing up. Oh God, I threw up in front of so many guests. My friend was visiting and [my doctor], the amazing Dr. Nace, came in and he just started taking 60 stitches [out of] my hand while she was there.

The nurses at SICU kept telling me that I had to advocate for myself. How do you advocate when you don’t know what to advocate for? But I learned quickly and just like touring, you build the best team possible. And that’s what I did at Spaulding, starting with having Dr. Nace as my main doctor in charge. He was a pitbull and fought for me, daily.

Then one day this other doctor came in, Dr. Divo—his wedding ring was a skull—and I’m like, “Oh, we’re going to get along great.” We were waiting for Worcester to give approval to take the trach out. He said, “You know what? we’re taking the trach out on Monday. I’m tired of waiting because you deserve to speak.” So we didn’t know if I was going to have a voice. Can I sing like Adele? Hello? Can I be a rock star now? Please, God, let me be able to sing like Adele and please don’t give me a high squeaky voice. So, everybody rolled in and they did it right there. They took the trach out and I said, “Hi” and it was my voice! And it was clear! And the doctor was like “Say it again! Say it again!” and I was like “Hiiiiiiiii.” I never needed speech therapy.

What brought me great joy for the next week was [making everyone in] the room promise not to tell anyone that I could speak, so every time the nurse or CNA would come in, I would yell. And they would drop stuff and it would make me laugh! I spoke so much the first day, I lost my voice. I was calling people on the phone. For the longest time I wanted nothing to do with communication, and I know that upset Scott. He would show me videos and he would read [notes and emails], but I didn’t want anything to do with responding ... I was too exhausted. I was still trying to understand everything that was going on, and I couldn’t handle that. I couldn’t handle the fact that I ruined people’s Christmas. That I ruined people’s New Year. I didn’t understand. I didn’t understand. It overwhelms me ... It still does. I remember really not fully understanding until my girlfriend Jacqueline came to visit me. And I was like oh my God I’m so rude …  I haven’t asked anyone how their Christmas was ... I missed New Year’s Eve. I missed all these events, and I never asked anyone how their holidays were. I aked Jacqueline“How was your Christmas?” and she looked at me and said, “How the fuck do you think it was? It was fucking horrible, Julie, we thought you were going to die.” I was like, “Oh God, that’s terrible. Oh my God!”

Scott and my mom lived together for 7 months—in this house—and survived. My mom’s amazing, but honest to God, like, your girlfriend’s dying. Your daughter’s dying. Initially, you’re not allowed to go in and see her. So I know it was an incredibly stressful time, but they coexisted and made it work!

Helpless. Helpless. Helpless. I’ll tell you what. This has taught me how to ask for help. I never asked for help before. It was hard. And when I came home they put in those chair lifts … Scott redid the entire guest bathroom. They sent me home with a walker—which I never fucking used. Fuck you! And for my parents to see that it was so hard to walk … I was so weak. And my mom moved in to be there every day … helping me get clean, get dressed, feeding me. Dealing with me. She was incredible and I couldn’t have done it without her.

You went back to everything?

You know, listen, when you come home, and obviously I look different, you know? I had all my full amputations  ...I just didn’t want to go out. Plus, it was COVID. But then I thought, “Wait a minute this isn’t you. Since when did you give a shit what anyone thinks of you? What if people stare at me? Fine!” And we went out to dinner and people were staring at me but not in a bad way—it’s just a bit jarring to see someone with no full fingers. I remember  Suzanne’s little one, Ciaran asked, “Does it hurt?” The first question out of all children’s mouths: “Are you in pain? Does it hurt?” Nope. It doesn’t hurt.

You just have to have a sense of humor about it. I forget that people haven’t seen me yet, And  they’re like, “We’re so happy you’re alive!” This whole town has been incredible. People I don’t know—I mean, that [fundraiser]. This is an amazing town.

That’s why I came home; that’s why I moved back here. Why wouldn’t I wanna be here? Yeah, you know, I did Hollywood. I did Manhattan. Yeah, I’d love to have a studio apartment in Manhattan, absafuckinglutely—I’m a city girl. But, why would you not wanna be surrounded [by this]? My dad lives down the street. My brother, my niece, all my girls, all my guys.

You saw all of the nurses again. What was that like?

There’s so many more [that helped me], but 4 just stood out to me in very different ways. One was the nurturer, one was the badass, [one] was just real, and [one] was the tough one who scared me. They would brush my hair. They would calm me. They would laugh at me. I knew all about their families and relationships. We went to Clintons Bar and Grille and I had never seen what they really look like. So I only knew their eyes, because of COVID. It was important for me to thank them. And I always said, “I just want to have a glass of wine with you.” Well, 1 turned into 4, but whatever. Lots of tears. Lots of laughter. I thanked each one of them for certain things I remembered.

But what else happened was they told me things I didn’t know.  … some memories just came flooding back. The next day, I kind of went down didn’t move for a couple days. A lot of it was overwhelming. I didn’t expect the spiral but that’s part of the process. I have a whole list left [of people to thank]. I decided that I want to go back in and volunteer once COVID is over because I wish there was a “me” there, you know? No one can relate. No one is ever really going to understand how I feel and what I’ve gone through, what I’m going through. And that’s OK. I hope no one does. I hope no one ever goes through what I’ve gone through. I’m fine. I’m fine. I’m fine.

I can’t button buttons. I got stuck in a shirt. I had to text the girls to come get me out of this shirt, and I was laughing hysterically! I can’t feel skin [on parts of my breasts] so sometimes my boob will fall out, so everybody’s on boob alert if we’re out for dinner. I remembered I just wanted to drive! My family and friends were incredible, giving me rides to all my appointments, but that’s such an important part of being independent. When I was 15, I would wake up wicked early in the morning, steal my mom’s car and drive around the neighborhood going 5 miles an hour. Duh, stupid ... But, I got in the car and I started driving 5 miles an hour and I was fine! I was like, “Fuck you, doctor who said I’d be in a nursing home, never be able to eat, and never be able to speak. Fuck you!”

I don’t really believe in a God-fearing God, but I always did believe in a higher power. But after this ... I now believe there is, wholeheartedly. I do have a friend who speaks to the dead, and of course, I talked with her, and she’s said I have a team down here and a team of angels up there. One was in charge of making sure Suzanne was OK, and one was in charge of making sure my parents were OK.

I do find, you know, when people say, “Oh, God had this happen for a reason.” Don’t ever say that to someone who is really ill. Don’t ever say that God had a reason or—here’s another one of my faves—“You were meant to come back to do greater things with your life.” The other question I get a lot is: “Since this happened, how are you changing your life? What did it make you change?” Nothing! Nothing! I was living my life! I was doing what I wanted to do. I am more than happy to go back to touring and living my life exactly how I left it.

What are you most excited about?

I just want to get on the bus. Last Fall, I went to go visit the Crows when they performed in Boston and 2 hours before the show, it got called because of COVID. So I never got to see my guys, who I consider brothers. I went backstage.  Square gave me a ride home and I cried from the minute I got in the car for an hour. I wanted to go on the bus. I wanted to leave with them. It’s where I belong. It’s where I’m meant to be. The stronger I got, I said, “I’m touring. I’m going back. I can still count money. Everything’s just going to take longer.”

Oh! Also, I’m writing a book! Pre-Julie always knew I had a book in me, but I thought it was probably going to be fiction, and I wasn’t going to do it till I retired. And then I remember coming out of my coma and I’m like, “I’ve got the book now.” It’s not going to be a “Go team!” It’s going to be sarcastic and cutting and honest and it’s going to be called “Get the Fuck Up or You’re Going to Die.”

It’s been 10 months since we spoke to Julie. Today, she is on tour with Counting Crows in Tel Aviv and Europe. She’ll take a short break at the end of 2022 to work on her book, and then she and Scott will get back on the road to continue the tour in Australia, South Africa, Europe, and then home to the U.S. at the end of 2023. Well fucking done, Julie Duffy!

Lisa Carlin

Photo: Ladybug Photography Dress: Strand, The Boutique

FOR LISA CARLIN, FIGHTING BREAST CANCER WAS ABOUT ADDING PURPOSE AND COLOR TO EVERY MOMENT WITH HER FAMILY, EVERY MOMENT IN TREATMENT, EVERY MOMENT SHE HEALED. HER NEW SHOE LINE, POPPIES WITH PURPOSE, INJECTS THAT COLOR AND PURPOSE INTO EVERY PRETTY STEP YOU TAKE.

I was 37.

Who gets breast cancer at 37?

Apparently me.

This was 10 years ago and I had just decided after many years as a working professional, that I wanted to stay home with my two girls who were 2 and 4 at the time. I loved my job working in the commercial interior design and architecture industry. I was surrounded and inspired by creative, talented, smart and fun people every single day. My career was a big piece of my identity. My husband had taken a new job two years earlier when our youngest daughter, Lyla was born. It wasn’t just a job, it was a new way of life for our family because he started working nights. His hours were completely opposite of ours. He started work at 6 p.m. and crawled into bed at 5 a.m. He loved it but we were two ships passing in the night with our opposite schedules, all while trying to raise our two young daughters, juggle childcare and the hustle of daily city-living in Boston. Life just got too busy and hectic so we decided it was time for me to just be mom. I recall worrying about stepping away from my career, and a dear friend at work said “you will never look back and regret taking time to be with your girls. You will regret not taking it.” It was the best decision I made. They were 2.5 and 4.5 at the time, summer was just starting and everyday was our day. “How long should we stay at the park today? Which park did we want to visit? Do we get in the car (no!) to run errands? Should we skip dinner and get ice cream?” Oh, what I’d do to go back to those days. Life was way less hectic. Life was good. We loved our new routine.

Like anything that changes the direction of your life, you never forget the moment it happens. It was January 2013, I started noticing a random discomfort feeling in my right breast. It continued on for a few weeks and then one day I felt a knot, about the size of a pencil eraser head. Seemed strange. I made my husband feel it to make sure I wasn’t imagining it and he casually said, “go get it checked out. It’s probably nothing, but it can’t hurt.” THANK GOODNESS I listened ( I don’t always!). I was able to get a doctor appointment within a few days but it wasn’t with my primary care doctor, who I loved. I saw another female doctor in the practice and I’ll never forget her name, Dr. Rhonda Rockett. To this day, I believe she saved my life and may not even know it, but I do and I am so grateful! I vividly remember Lyla, my youngest daughter, was with me at that doctor appointment. She was sitting in the guest chair sucking on her lollipop, not a worry in the world for a 2.5 year old. I wasn’t worried either until Dr. Rockett said, “You know what, let’s not mess around here. I want you to go get a mammogram.”

“What!? Ummmmm, I am only 37. I exercise. I eat healthy (most of the time). I get my sleep. I drink caffeine and alcohol in moderation. I am doing all the things I am supposed to be doing. Age 40 is when I am supposed to have a mammogram done, not now. ”

Well, ok, I thought, she’s totally being cautious. That’s what a doctor should do. So, I pulled my thoughts together, while staring at Lyla with her lollipop and said, “Ok. I can get a mammogram, no problem. When?” Tomorrow at 7:30 a.m. Wow. She was not messing around. UGH!

Remember how I said my husband worked nights? Well, any morning appointment required finding help when it came to the girls, since he slept until 11 a.m. I was not too worried about this appointment. I’ve got this. No need to come with me. I’ll get help with the girls and I’ll just go by myself. How bad could the mammogram be?!

That morning, I remember walking into the waiting room and I was by far, the youngest woman there by at least 20 years. I felt like I should have been there with my mom or my grandma. But I was there for me and started to really let my head go down a dark hole with all the “what if’s.” I managed to pull myself out of this for a moment, but two mammograms done, original and then a redo, I was now being walked into the outpatient surgery room for a biopsy with the head oncologist. Now, I was scared—terrified actually. What did all of this mean? There was a cluster of cells on the imagery that they wanted to explore closer. Now, I did wish my mom or husband had come with me.

Naturally, this all happened on a Friday and they told me I’d hear back the following week. “The following week?!” What?! Are you kidding? How do I go about my life after 4 hours of scans and biopsies? So I waited for the results. Saturday turned to Sunday, into Monday. They were long days of mindless worrying. We got through the weekend, which happened to be our 9th wedding anniversary. We mustered the energy to go out to a nice dinner and tried to celebrate. The night is still clear as day, I recall thinking, “Whatever this is, we are going to get through it.” Well, that Monday afternoon, we were out at the park, per our usual routine, and I got the phone call from the doctor. The biopsy confirmed, I had breast cancer.

Silence.

My husband and I just looked at each other and then at our girls and started crying. I instantly thought I was going to die. How can this be happening!? My head was swirling. At that moment, I happened to be with one of my dearest friends, who works in the medical field. She immediately sprang into action and reached out to some trusted doctors she knew and asked, “who would you send your wife to if she was diagnosed with cancer?” Three of the 5 doctors came back immediately with the same name, Dr. Barbara Smith. She specialized in women under 40. I never win raffles or scratch tickets, but I can now say I won the lottery finding Dr. Smith because I am here, sharing my story, and getting to watch my daughters turn 13 and 15 this spring.

Meeting with Dr. Smith and her team at MGH was where the real journey began. It was truly drinking from a fire hose with all the information coming at us. It honestly felt like they were speaking a different language. They were but it was their language that they knew very well. We were now along for the ride and putting all trust (aka my life) in their hands. Where do we start?

We started with the conversation around a mastectomy to truly see how much the cancer cells were traveling. “How can this be my life?” I remember thinking. I was just having the most wonderful days hanging with my girls at the park, feeling like life was good. Now six months later, I am discussing taking my boobs off with no known outcome and maybe a discovery that I don’t want to know about inside. All I kept thinking about was why the hell would I want to go through with another surgery like this if there’s a chance it could come back on the other side. DONE. Take both. I don’t want to worry about this again. But wait, I am still young and want to wear bathing suits, dresses, and feel like a lady. So many conflicting emotions and hard decisions to make. How do I explain to my 2.5 and 4.5 year-old girls that I was heading to hospital for surgery and won’t see them for a few days let alone be able to lift them for weeks. My heart was melting. Thankfully, we had so much help from family and friends, they didn’t miss us for a second. Cancer is a horrible toxin that invades the body yet ironically brings out the very best in most people.

Surgery day arrived. It was an early morning in April and I was quiet and very nervous. The hospital was cold. My husband was right by my side, like he always was. I, on the other hand, was facing my reality. “What are they going to find? Did it spread? What am I going to feel like after my surgery and what will my body look like? What the hell was this cancer doing? Was it spreading? What if they don’t get it all? When will I be able to exercise again? Will I run again? When can I hold my girls and take them to the park?” My mind was spinning as I was rolled into surgery.

BOOM.

“I woke up in recovery and realized that I couldn’t really move. I was bandaged so tight. Six hours had passed. There was my husband, right next to me keeping our families in the know throughout the whole ordeal and what a freaking ordeal this was. ”

Someone I had connected with, who also had very young children and also had a double mastectomy, told me she left the hospital and checked into a hotel for a few days so she could rest and heal. The minute my mom got wind of that idea, she made it happen. She took care of the girls in our small city home and sent us to the Four Seasons. I know I am lucky that I was able to recover there, but all I remember from the first two nights was the most excruciating pain ever waking me up in the middle of the night. Pain so intense it brought tears to my eyes. Plus I had tubes literally sewn into the sides of my body to drain all of the fluids. It was pain like I have never felt before. Those few days were really tough. The highlight of each day was my girls coming over to swim in the hotel pool, while I sat and watched. Thankfully, life was great for them and they didn’t really miss a beat.

Now we wait for the result of the pathology report from the surgery. It felt like an eternity, and it was not what I expected to hear. The cancer had spread to two of the five lymph nodes they took out of my armpits which meant it was super aggressive and moving fast. “What was happening? What the hell does this mean now?” Chemo. That’s what it means. This was the moment I remember feeling so defeated. I sobbed and sobbed and said it out loud, “I don’t want to die. I just can’t. Not now!” There was my husband, holding me together.

It was not long after this moment, I had to dig deep and figure out how to find strength to move forward. I swear those little girls, my incredible family and friends got me through that dark time. I had no choice but to keep going. And that’s what I did—for them.That was when I decided I was going to wear my pink ballet flats to chemo. I was going to pull myself together, so that even when I was losing my hair and eventually bald, I still felt like I was powering through this really dark time in my life. Little did I know that 10 years later those pink ballet flats would inspire a brand with meaning and purpose that I can share with so many going through cancer treatment, and help bring people together during a very tough time. My wish is that every pair of Poppies with Purpose shoes will help carry every cancer fighter through their dark clouds and bring them a bright spot. Everyone deserves it.

The chemo journey started off with a bang. IVs with fluids to hydrate me, Benadryl to help with any reaction, and then the red devil called AC. It was red, I peed red after it was done. The bag itself said “hazardous” on it. I remember thinking, “Well this is not good.” It knocked me on my feet. This became my full-time job because I’d be at the hospital sometimes for four to six hours. I always had someone with me, usually my husband, but for those eight doses I received every other week, I was never alone. My mother did what she does best. She quilted the most perfect lap quilt for me to take to the hospital because it was always so cold. The best part was that the quilt fabric was actually my grandmother’s “duster” that she wore around the house, wearing her curlers, drinking her coffee. Little did I know that quilt would inspire the name of Poppies with Purpose. It was a bright, cheerful pattern with bright orange poppies. I just loved it and still use it today.

Chemo brought the highs and lows, but we figured out the final meds combination so the nausea diminished after each treatment and so did my hair. That was tough especially because I had long, dark, thick-ish hair that I loved. It was part of who I was. My girls loved brushing it. Clare, our oldest, loved to sit and braid it. It started to fall out in clumps after the second chemo session. I knew then it was time to invest in a wig especially because we had two family weddings that fall and I did not want to show up looking like ‘the cancer patient.’ So, I enlisted my all time favorite hair stylist, Tim, to shave my head surrounded by family. We all cried! I have to say, I did get the best wig and I still have it and see it everyday in my closet. It is a part of me and my life that changed me to the core. I can’t quite part with it, not sure why. Chemo lasted all summer and we all got into a routine with it. I wore a lot of big floppy hats to hide my bald head, but sometimes I’d just be bald and in my bathing suit on the beach with my girls. I got a lot of “pity looks,” but you know what, I smiled and thought, “I am ok and I am here.”

I was never happier to be done with the chemo journey, but what I wasn’t expecting was how long the radiation would be. Six weeks, five days a week was harder for me than every other week of intense IVs. I really struggled with it! Again, I had no choice but to power through it. My sister-in-law and I would sometimes put the kids in the stroller and walk or even jog, if I was up for it, to radiation. Yes, sounds crazy I know, but it helped me so much getting any amount of exercise in, especially going there.

I am such a believer in people showing up in your life for reasons bigger than we may ever know. Much like the mammogram moment, I too was one of the younger people in the radiation room. Until one day when I met a girl younger than me. Her name was Jen and we ended up on the same radiation schedule so I would see her a lot. She was such a bright light with her beautiful smile and energy. We always compared notes about what was working on our terribly scorched skin and juggling our own health while trying to raise our daughters. We got to know each other through that time and continued to stay in touch.

Jen passed away.

That was truly a defining moment that I felt like I needed to bring Poppies with Purpose to people like Jen’s daughter, who could put on a pair of pink shoes, think of her mom, and hopefully in time find a smile instead of tears in her memory.

Cancer really does suck. It’s so hard, it’s so messy, it’s emotionally and physically draining to the patient and everyone in their support system. If Poppies with Purpose can help brighten someone’s day on their tough journey and make an impact on the world of research, then I have found my bigger purpose during a really dark spot. It is time to make more rainbows, one colorful shoe at a time.

With color and purpose,

Lisa

Michelle Schuman

Michelle Schuman

MICHELLE WAS ALWAYS CONNECTED TO NATURE AND ITS HEALING POWER. IT WAS THE SOLITUDE AND CALMING AROMAS OF ALASKA THAT ALLOWED HER TO HEAL AFTER LOSING THE LOVE OF HER LIFE.

In the distance, the Bendeleben Mountains disappeared into a memory as the angry, black clouds bled rivers of rain while winds shook the small plane. Our pilot, struggling against the controls, was quiet and focused on his instruments as we bounced up and down and side to side. I dared to look at Pete, my coworker from Palmer, as he held my hand. He whispered, “It will be ok.”

This was not my first rodeo flying in bad weather while working as a range scientist for the USDA, but this storm blew up fast and strong. My brain would not quiet as the words screamed inside my head, “Rick this was why. This was why. I love you.”

For months I had this foreboding that shadowed my excitement to see my husband. Finally, when Rick stepped from the gateway into the Anchorage Airport terminal, in May of 1983, I felt nothing but pure joy. Dressed in hiking boots and jeans, his wavy brown hair streaked with blonde, the dimples of his smile calmed my anticipation. And when I saw that familiar twinkle in his gray eyes, I ran to him and held him tight.

It had been nearly a year since I, too, had stepped into that same gateway and terminal in the Anchorage Airport. My subconscious convinced me that the short separation would be worthwhile in pursuit of our long-term dreams. After 4 years and many sacrifices, we now had an opportunity to have our careers not only in the same state, but the same city. I was thrilled, and yet worried with my second field season soon approaching.

I remember that weekend in April of 1979 visiting a girlfriend in Spokane. I was full of doubts and misgivings when I nearly called off our wedding. Rick was my soul mate and yet, I had to choose. Why? Did I not earn my path to have the man I loved and the career I earned?

At the age of 4, I announced to my parents that I was going to be a big game veterinarian. For years, that dream never faltered, no matter the obstacles and challenges that stood in my way, including my parents. Throughout my childhood, they reminded me I was on my own after high school graduation. They had no inclination to help their oldest daughter go to college.

When I found my mother standing amongst the remains of my pink papier mâché “piggy bank” coins scattered on the floor, she declared, “Your father does not leave me enough money to feed you kids.” On her knees, she gathered the coins into her apron and left the bedroom I shared with my sister.

Standing there, fighting against the tears, I picked up a piece of the pink papier mâché with the letters C O L L in gold glitter. College was my dream and even by the age of 12, I was willing to sacrifice anything to accomplish that dream. It was unfortunate my mother, intelligent and witty, used alcohol to diminish her desires. As I looked at the broken pieces on the floor, it was not just the piggy bank she shattered; it was also my heart.

On the good days my mom was known among the neighborhood kids as the cool mom. Although our home was cramped and tiny as a matchbox, it did not matter to us kids. There were no walls outside and the changing seasons simply broadened our playground. As spring brought warmth, Mom would throw my older brother, me, and my younger sister into our old brown

Chevy station wagon and take us fishing. She could sit for hours along the shore, her line in the water, a cigarette hanging from her ruby red lips, with distant eyes in a faraway place. As I glanced at her, she looked content and at peace with her hauntings. It made me smile.

I inherited her love of nature but not her patience. Rather than fish, I would explore the basalt cliffs, climbing the fractured pillars splattered with yellow and orange algae. It was rare not to see a deer or a rabbit. If I was lucky, I would find a snake snoozing in the warmth of the sand.

During the bad days, when depression and alcohol weighed my mother down, it was the smell of sage and the calling of the meadowlark that brought me peace. I would grab my bike and Jingles, my dog and faithful companion, and ride as fast as I could to the vast open fields of sagebrush. There, safe with Jingles at my side, I spent hours in the solitude of nature.

In the summer night, to drown out the alcohol-fueled anger, I slept outside on the cool, green grass under the glittering stars, making a wish for every star that sliced through the dark night, only to be swallowed by the darkness.

My life changed when I met Rick in the summer of 1976. I was offered a work study job through Washington State University with the U.S. Forest Service, in the Blue Mountains of Oregon. Neither myself nor my new co-worker Jan, also in work study and going to WSU, had a vehicle. Although the nearest town was an hour away, we had no problem finding interesting things to do and see in this wonderland of forest, rivers, and mountains. As recreational technicians, it was our job to maintain the dozen or so remote campgrounds scattered throughout the Malheur Forest.

After a long day cleaning outhouses and picking up human trash–and diapers–in fire pits, in outhouses, stuffed in garbage cans, all I wanted was a long, hot shower. I exited the passenger side of our two-ton truck filled with garbage and walked to the rear to unload our stinky cargo. What happened to Jan? It was then that I noticed her leaning against the truck, a grin on her porcelain face, staring. I followed her gaze to the ranger station where a dozen or so smoke jumpers were doing calisthenics, sweat glistening on their shirtless bodies.

I only noticed one guy, lean and muscular with light brown hair and smiling. Jan looked at me, “What about your rule?” “What rule?” I answered. That night I found out his name was Rick.

Amongst the thousands of acres of wilderness, Rick and I found each other. He grew up 40 miles from my home town in Washington State and he was studying pre-med at WSU. He was 6 years older than me, loved the outdoors, was smart, funny, and athletic.

No, there was never any doubt of our love or marriage. But when I was offered a wildlife biologist position in Montana after I graduated, I saw no reason not to accept the job. Rick had changed his major for a third time and he insisted he could only get his PhD in engineering at WSU. Not Montana State University. I wanted to get married and I wanted the job, and Rick could still get his graduate degree in engineering. What was the problem?

After a weekend of soul searching and my mom’s admonishment of my selfishness, I gave in.

One question I am frequently asked: “Do I regret anything?”

The answer is always the same. I regret turning down the job in Montana. I am convinced if I had only insisted, maybe even demanded, that we move to Montana after we got married, our future would have been the one we planned: kids, grandkids, and traveling the world. Or would it? That is the problem with regrets. We do not really know.

We got married on May 26, 1979, and moved to Pullman, Washington. Rick had a research assistant position which helped supplement the income from my jobs. He decided against the Ph.D. a few months into the program, allowing his insecurities of not being perfect, get the better of him. I was pissed, not at him but at myself, because I did not stand up for myself. When Rick graduated from Washington State University with a Master’s in engineering in 1981, he accepted an engineering position with Chevron in Concord, California.

California, and the job offer, became a long and heated discussion. This time, I did stand up for myself as an equal partner in our marriage. Rick explained to Chevron the terms of our agreement in acceptance of his employment. Chevron agreed to find his wife a position in the environmental department.

While Rick went to work every day, I was left with the burden of taking care of the tasks required when moving to a new city. After months had passed, and no word about my career, my patience had reached the tipping point as my life became filled with the domestic chores of an urban wife in an urban environment. I became a nag, asking my husband when was my interview for this promised position!

Without any confirmation of this so-called job of mine, I did what I thought I should do: I showed up at his place of work asking to see my husband. I had no idea security would not allow that. A few minutes later Rick, embarrassed more than angered, after being summoned to see his wife in the waiting area, looked at me.

“Really, I need security clearance to bring my husband lunch?” I smiled as I held up a paper bag. He kissed my cheek and said he would talk to his boss.

As more months passed, fearing for my sanity in this noisy human-created cement ecosystem, I gave up on Chevron’s promises and excuses. Rick was extremely busy with his various projects, requiring travel to offshore oil platforms so he was rarely home. Although Rick was apologetic and sympathetic in my yearning to begin my career, I learned at a very young age to never depend on anyone for something I wanted.

I said yes to a temporary position in Carson City, Nevada, with the Bureau of Land Management tracking wild horses. The field position required me to work 4 ten-hour days, which meant I had long weekends. It allowed me to visit Rick in Concord and when Rick was not working in the field, an opportunity for a romantic rendezvous in Lake Tahoe or to explore the natural world of the Sierra Mountains. It was perfect and a financial boost. Rick found a smaller, less expensive apartment and I scored on a living arrangement in Carson City. I paid $5 a night for a room when I was there.

The job was heaven. During the day, I followed different herds of wild horses, recording the size of the herd and notes on each of the horses: gender, age, and behavior. Watching these magnificent free animals, I was drawn to this beautiful white stallion, his head high, running behind his herd. He gave me hope. I could not imagine what they endured, surviving in some of the harshest environments in the world.

Near the end of the day, I would throw my dinner wrapped in foil on the truck engine and by the time I would stop for the night, I had a hot meal. At first, I was nervous throwing my sleeping bag on the ground, but eventually that is where I slept, watching  sunsets melt into clear night skies while stars danced as if choreographed with the music of coyotes howling in the distance. In the morning, the luminous orange of the sunrise welcomed me to the new day.

One afternoon before leaving for the field, I received a call from the human resources assistant with USDA in Anchorage, Alaska. She was asking me if I was available for a temporary range scientist position. I vaguely remembered selecting Alaska, along with several other states, on my application with the federal job registrar before Rick accepted the position in California. That was how I got the job in Carson City, but federal jobs in 1982 in the natural resources field were scarce.

During the conversation, I got the distinct impression the HR assistant was holding something back, a feeling I could not quite explain. They wanted me to start July 1, which was only a month away. As Rick and I discussed the options, one fact stood out: Chevron had an office in Anchorage. Although a temporary position, it would allow us to check out Alaska, a place we had planned to visit. We felt the opportunity was our destiny, so we said yes.

After flying all night, I arrived in Anchorage with a backpack and a duffel bag. The government did not pay for travel relocation for temporary employees, one of the many disadvantages of seasonal and temporary positions.

That feeling and the hesitancy of the human resources woman became clear when I was introduced to my supervisor. A touch neurotic with a complete lack of common sense or empathy, he insisted I leave immediately for the field camp. Before I left, the HR assistant apologized to me, guilt obvious in her eyes. “It’s okay,” I lied.

Once I landed in Nome, I followed the directions given to me by someone other than my supervisor, to the plane charter, Bering Air. Thank the stars they knew where the field camp was, because I certainly did not. We landed in a snowstorm on a dirt road in the vastness of nowhere, my home for the next 8 weeks. When the guy I was replacing showed me my tent, I realized instantly, this would be one of the many challenges this position would present to me. There was no door and the olive-green mummy sleeping bag was older than me. The feathers sticking out of the worn seams blowing in the breeze. This was an all-male camp and they had made their first move.

“Boys, boys, I accept your challenge. Let the games begin,” I muttered as I found the foot path to the outhouse, the sun-bleached caribou antlers sitting upon the tripod of driftwood, easily marking the location.

Walking back to my tent I could feel my body awaken from the inside out. The cool, fresh breeze cleansed my lungs. I stood still and with closed eyes concentrated on the silence. As I opened my eyes, I saw nothing but the sheer beauty of nature. My soul had been touched. I remembered the defiance in the eyes of the white stallion as he refused to be corralled during a round up and now, I understood. His soul belonged to nature, not to man.

Summer was over as the colors of the tundra changed from green to brilliant reds and snow dusted the mountains. On our last night in Nome, we were celebrating the end of my first field season with beers at the Board of Trade, when my crewmate announced I had won the bet.

I took a sip of the cold beer and remembered how close it came for me to sweet-talk my helicopter pilot for a ride back to Nome. It would have been so much easier to walk away from the world of testosterone and go back to my husband. All hell broke loose in our camp less than a day after my supervisor showed up. The tension this man caused was mind-blowing.

The bet was not only if I could handle working and living in a field camp. The bet was whether I could put up with the man who was my supervisor. At the time, or maybe it was the beer, I replied, “Well hell, he’s not the first cowboy with insecurity issues. Bring it on and get me another beer.”

Holding hands, Rick and I walked to my car outside the Anchorage Airport. Rick stopped, “Wow, look at those Mountains.” He looked at me and winked before getting into the car.

Since Rick was on a temporary assignment, Chevron approved us to stay in the company’s two-bedroom apartment, a step up from mine and in a better location to both our offices. I was thrilled to find out his co-worker, and a friend of ours from the California office, would join us at the end of May. He was also on a short-term assignment and would provide Rick someone to do things with while I was in the field.

To celebrate our fourth wedding anniversary, we camped in Denali National Park. It was magical, eating s’mores and drinking champagne while enjoying the midnight sun. Spring in the Interior happens quickly as waterfowl streak across the sky and moose and grizzly gorge on the newly sprouted vegetation in the understory. It is a time of rebirth and replenishment in nature.

Our life became routine, as if the year we were apart never existed. We spent weekends exploring trails, and Rick joined a softball league. But when the ice disappeared from the lakes, Rick was ecstatic to find out that windsurfing was a very popular sport in the Anchorage area. He bought a used windsurfer and we spent nights and weekends at the nearby lakes as he patiently taught me how to windsurf. And then it happened. The day finally arrived for my departure for my second summer on the Seward Peninsula.

Rick soothed my fears and tried to ease my anxiety. He thought it was the pressure I put on myself, finalizing the details of managing a remote field camp for 8 weeks, not to mention, the implementation of a multi-million-acre vegetation and soil survey. But that feeling deep in my gut tugged at my heart. He made me laugh when he said, “If you are not home for a break in 4 weeks, I am chartering a plane to get you.”

He promised me he would be careful. I turned to look at him before walking down the gateway. With watery eyes and his hands in his jean pockets, he smiled.

As the small plane shook with each blast of the wind, I squeezed my eyes shut. Concentrating, I focused my thoughts on Rick, needing him to hear me, to know how much I loved and cherished him. I was so completely in my own thoughts I did not hear Pete screaming in my ear, “Michelle, Michelle, look–the Bering Sea. We made it!”

We didn’t crash. I beat it! We beat it! Rick was right. Everything will be okay. Well, except for Pete’s tent as it blew across the tarmac in a direct trajectory for the Bering Sea. I remarked, “Maybe a dome tent is not the best choice.”

Upon our arrival in Nome the week before, my supervisor informed us he had errands to do. My co-workers who were accustomed to his antics, in unison said to me, “It’s better he is not around.”

A week later, the day before our fixed-wing nearly dropped out of the sky, my supervisor arrived in a chartered aircraft with his young son. There was no explanation as to where he had been for the last 2 weeks, and he said nothing about our new guest, as if this was a normal occurrence.

As the soil scientists abandoned me for their week off, I had spent a frustrating day with my supervisor in hellacious weather. The pilot was losing his patience with this man’s lack of safety. My gut was on fire with anxiety. The next day, I informed my supervisor I had work to do in camp. I winked at the pilot and whispered, “Just remember you are in charge.”

Then the world that I knew ended.

A few hours later, Ruth, our cheerful Yupik cook, yelled that we had a visitor in camp. Standing next to her was an older man from the nearest village, his black hair covered with dust. He had ridden his three-wheeler from Elim. The sadness on Ruth’s face could not be masked. I didn’t even notice that the helicopter mechanic was frantically hooking up the battery for the radio phone. Our only communication to the outside world.

“What’s wrong?”

The small man, with the weathered brown face, explained there was an emergency for me. And then I heard chatter on the radio as our mechanic called me over, giving me the receiver. A man’s voice said my husband’s name followed by the word accident and then two words I could not comprehend.

I clicked the button, “This is Michelle, over.” Silence, then click, “Michelle your husband was in a car accident. I am sorry, but he died during surgery.” Click. I dropped the receiver as Ruth caught me and the mechanic caught the receiver.

I needed air and ran outside. The walls were closing in on me.

The sea was tumultuous, the color of deep sapphire fringed with brilliant white as the waves crashed against the sandy shore. The noise was deafening, but I welcomed it as I did not want to hear myself think. The salt spray lingered on my face as I got closer and closer. I knew I needed to breathe but how could I? Why would I?

I screamed at the stormy heavens above, “You fucked up! You were supposed to take me! Not him.”

Exhausted, I sat on the desolate strip of beach, shivering.

The mechanic sat next to me as he wrapped my coat around me.

I found out later from Ruth that the Agency refused to send a charter to pick me up even after the mechanic relayed to them that there was no response from the helicopter. He was screaming at them over the radio phone. Throughout this conversation, Bering Air made arrangements to divert a commercial commuter flight from a local village to pick me up.

The mechanic helped me back to camp where I packed and I waited with Ruth. When the thumping of the helicopter was heard, our mechanic rushed out to tell them what happened. I saw anger on my pilot’s face as he stormed into the kitchen. The scene in that small kitchen, surrounded by sea and mountains and tundra, is forever imprinted on my brain.

“I am taking you to Anchorage, Michelle,” my pilot commanded. My supervisor said he had no permission to take the helicopter to Anchorage.

Everything was in slow motion but I grasped how precarious this situation could be. As the mechanic held the pilot back from attacking my supervisor, the pilot looked at me. His anger was transformed into sadness. He walked over to where I was standing and hugged me. I whispered to him that I will be okay. This man was a survivor of Vietnam, as was my husband, and I felt his despair.

Three days later I carried my husband’s ashes onto an Alaska Airlines flight to Seattle and then a long drive to my parent’s house. I am not sure what I would have done without the help of my mother-in-law with the funeral arrangements. I felt suffocated, as my mom dictated orders to me. I had to buy a dress and shoes. I had to buy flowers for Rick. Why would I have to do that, I asked her? That was already being arranged at the funeral home in Wenatchee. She called me selfish.

When the cards started arriving, many with checks, I cried with gratitude and heartache. And then she told me I could not keep the money. It was not for me. It was meant for a charity of Rick’s.

I heard Rick’s words as I felt a slight touch on my cheek, “Go fish, Michie.” Three words he would use to settle me when disparaged by my mom.

Sage calmed my body as I breathed the rich aroma deep into my lungs. A red-tailed hawk screeched above as he caught the warm thermals from the basalt cliffs. Shadows were creeping across the dusty ground where I sat. I have no recollection of how long I sat in the sagebrush field, nor how I got there. What I do know was that I was not alone.

The power of nature has no boundaries or limits. It provides our soul sustenance without conditions, even during the gloomiest of days. Although lonely, we will never be alone, as the moon and the sun will always be there to guide us. Nature is a relationship that will last an eternity, if we allow it.

Michelle Schulman is a writer, adventurer, and environmentalist. “I was born in a small, rural town in eastern Washington, where I was free to explore the basalt cliffs and sagebrush fields. After receiving my undergraduate degree in wildlife biology, range management, and soil science, I married my soulmate, whom I met working in the Blue Mountains of Oregon. Our adventure took us to California, where my husband was a mechanical engineer; and Nevada, where I tracked wild horses. And then, I was offered a position in Alaska, working with reindeer and muskox. We thought it destiny, as his company also had a position in the same state and the same city, Anchorage. Early on in our Alaskan dream, Rick was tragically killed, propelling me on a tumultuous journey through a male-dominated culture that routinely diminished and disrespected the accomplishments and abilities of women. I experienced with great dismay the ways in which greed and ambition so easily place humanity and the environment in jeopardy. My memoir, The Understory, is the culmination of my efforts to control my own destiny, through the healing lessons of nature, and my love of writing. Currently, while in Florida, I am writing and wandering, as I ponder new beginnings, while looking for a community to call home.” Michelle’s book” The Understory: A Female Environmentalist in the Land of the Midnight Sun” can be found on Amazon.

Cathy McGrath + Maureen Cardinal

Maureen Cardinal (left) and Cathy McGrath

AFTER BEATING CANCER AT AGE 40, CATHY MCGRATH WAS DETERMINED TO ADD A BIT OF DIGNITY BACK INTO THE PAINFUL AND RESTRICTIVE TREATMENT. SO SHE ASKED HERSELF, “WHAT WOULD JACKIE ONASSIS DO?”

WHEN I WAS 40 YEARS OLD, I WAS DIAGNOSED WITH BREAST CANCER. I HAD BEEN GOING TO MY OB-GYN FOR A YEAR COMPLAINING OF PAIN AND PRESSURE IN MY RIGHT BREAST. HE ASSURED ME THAT BREAST CANCER IS NOT PAINFUL AND NOT TO WORRY ABOUT IT. I WAS SLEEPING WITH A BRA ON BECAUSE THE PRESSURE WAS SO INTENSE. FINALLY, AFTER MY THIRD VISIT HE DID AN ULTRASOUND. THERE WAS A LUMP THE SIZE OF A CHICKPEA. IT DID NOT SHOW UP ON A MAMMOGRAM. I ASKED HIM TO SCHEDULE A SURGERY TO REMOVE IT. I WENT TO MY LOCAL CATHOLIC HOSPITAL, TOLD MY HUSBAND TO DROP ME OFF AND I WOULD PAGE HIM WHEN FINISHED TO PICK ME UP.

When I woke from this first surgery there were nuns around me praying. I thought I was dreaming. The surgeon said he was very sorry to report it was a very aggressive cancer and when he went to remove it, it scattered. He explained it was like mercury at the bottom of those old thermometers. We met with the hospital oncologist, and he told me and my husband that we should go home and get our affairs in order. We were both in shock and absolutely devastated and petrified. Our lives were literally turned upside down. We had 3 young children ages 7, 9, and 11.

I went into Boston to the Dana-Farber Cancer Institute to get a second opinion and hopefully a better plan. Which was breast surgery, a chemotherapy clinical trial, and radiation. I had a lumpectomy at Mass General Hospital but they could not get clean margins.

Then I woke from my third surgery at MGH, a mastectomy and reconstruction, with multiple post-surgical drains. These drains are tubes that collect fluid from the body through a clear bulb-like container—often called “grenades” because of their shape—and these drains hang by a few stitches where the surgical incisions were made. These drains are extremely painful and become heavier and more painful as they fill with the fluid coming from inside our bodies. I found it very difficult to manage doing simple tasks and handling the cumbersome tubes at the same time.

I asked the nurse how best to manage these drains. “Go to Home Depot and grab a tool belt,” she said. This seemed absurd to me. “Seriously? No one has thought of anything better to manage these drains?” “No,” she said. “But someone really needs to!”

I thought there needs to be a better way. The loss of dignity and control was devastating enough but wearing these drains around was too much. Plus, if I could figure it out, it would be my giveback to other women battling this disease. As I lay in the hospital bed clicking my morphine clicker, Princess Di popped up on my TV Screen. What would Princess Diana or Jackie Onassis wear if they had to endure this post-mastectomy trauma? There is no way they would be running out to Home Depot for a tool belt. So, the process began.

I sketched a design on a napkin and called my sister. She inherited the domestic gene, she is extremely talented at sewing, cooking and even baking. I do not sew, cannot even do a hem, but I do know style—and what a woman needs after a mastectomy. I explained what I needed her to sew: the sleeves need to open to hide the IV’s and have easy access for a blood pressure cuff, there should be pocketing along the bottom to hold the weight of the drains.

After my makeshift jacket, I went to my aunt, a professional seamstress, and redesigned a classic jacket. My design showed all-around pocketing to hold multiple post-surgical drains and allow for one-handed dressing. I added a drop down button for access to a port-a-cath and used Velcro to reduce the pain involved with getting dressed and to allow for easy access for post-surgery exams. But what my design did best, is restore the dignity and independence that we often take for granted with the seemingly simple task of putting on something pretty when we feel awful.

The product was named ‘Jacki’. No more Johnnie hospital robes (Jackie is a nickname for Johnnie and I also believe we all have a little Jackie Onassis in us!) It was everything the hospital Johnnie is not: incognito and with classic style and multiple custom features for all phases of treatment: surgery, chemotherapy, radiation, and physical therapy.

I had wonderful neighbors. One was a partner for a big Boston law firm. As Betty Hanley Esq. drove me into Boston for treatment, she explained how to file a patent and decided to take on this project pro bono. I filed for a 501c3 non-profit status to be able to give these garments free of charge. Then I met my neighbor/partner/friend Maureen, CEO, Program Director, Jack-of-all-trades, who took charge as we learned every step of this new venture. Maureen Cardinal is the real engine behind our success. I had the vision but Maureen brought it completely to life. My title was chief volunteer and I helped when able, consistently inconsistent.

We went to Polartec in Methuen, MA and presented the Jacki to then-CEO Michael Spillane (we were introduced by a middle school volleyball coach, Tom Holland). Within 10 minutes into the story the CEO said ‘I get it’ and we will donate material to your nonprofit to help produce these garments. We had to learn every aspect of the apparel business right down to the buttons. We also had to learn to write grants to fund the program, mostly to pharmaceutical and medical device companies like Genentech and Boston Scientific, for example.

We were very fortunate to have my old boss, Richard Trussell, come out of retirement as the CFO who ran all the accounting, inventory contracts, and vendors. The word spread and we had many, many people come volunteer. We had friends, family, and local mothers dedicate their time to help in our success; each one brought their talents and specific knowledge: Pam Connelly, Darlene Hall, Joan Johnston, Danielle Flynn, Chris Baker, Casey Cardinal, and over 33 students from North Andover High as well as our own sons and daughters, their friends, and college interns from Merrimack College. It truly did take a village to succeed.

We tested the Jacki in two top Boston hospitals with the help of my  cousin, Janet O’Connor, an oncology nurse. The Jacki received rave reviews and took off immediately. The surgeons who operate at more than one hospital often brought them to their patients outside of our test hospitals. Our program, this jacket, ignited a movement! It went from patient to patient, nurse to nurse, doctor to doctor. Dr. Mehra Golshan, then a young breast surgeon at Dana-Farber and now at Yale Cancer Center in Connecticut, said “I cannot express how wonderful this Jacki program is, across all corners the response has been a resounding “Yes” to the Jacki. In treating women with breast cancer, I can say that the dignity and care of my patients is my highest priority. The Jacki has allowed for the women to maintain their dignity during this most difficult of times.”

This is where the the story turns, it is the point where the story is no longer my own. It becomes the story of the 30,000+ incredibly strong, resourceful, amazing women we have helped to get back to daily life. Like the woman who delivered her father’s eulogy in a Jacki just days after her mastectomy. Or the woman who was released from the hospital in her Jacki so she could dance with her son at his wedding. Or the young mom who just wanted to make it to her daughter’s kindergarten open house without carrying around all those drains. Or the grandmother who wore her Jacki so she could get down on the floor and play Thomas the Tank with her 3-year-old grandson.

We know nothing is easy about this cancer diagnosis. Life just seems to get so much more complicated. We who have been through it, know that the mental game is just as hard as the physical game. The guilt, the fear, the anguish, the pain, is insurmountable.

We received hundreds of letters from these incredible women.

Two of my favorites are:

“Having been diagnosed with breast cancer and having surgery, a mastectomy, within 32 days of each other, and 6 hours of travel has been an exhausting, expensive, and emotional experience.  I almost did not have time to cry. However, when the breast nurse gave me the Jacki, I broke down and wept. Your gift of the Jacki made me feel like I could go forward. Looking smart, whole, feminine, and like myself. I cannot express my thanks to you enough.”  - Beth S., Maine

“Thank you so much for designing such a practical solution to a big problem post breast cancer surgery.  When the nurse told me about your program, tears came to my eyes. My body hurt, my heart hurt, and my soul hurt with my diagnosis, and now someone was helping me on the road to recovery. I am a mum of 3 young children, and my diagnosis shook our foundation. Breast cancer surgery recovery is tough with drains etc. Your solution gives women some dignity, fashion, and comfort during a very challenging time. Thank you to you and your sponsors.” -EQ, Massachusetts

Ultimately, our mission is to provide the Jacki free of charge to any woman who has to endure a mastectomy. The small quantities we were manufacturing in East Boston were very costly to produce even with the donated material from Polartec. We then learned of a place that manufactured samples in China. Maureen tackled all that was involved with overseas production, shipping, and communication, and we were able to lower our costs dramatically.

In 2013, we entered the MassChallenge start-up innovation contest, and we met a man who worked for Genzyme who was holding a class on obtaining Medicare health codes. We told him about our breast cancer garment and he said, “Lucky you, a breast cancer health-code is the easiest to obtain since wigs paved the way on emotional quality of life.” This was our “aha!” moment. It was time to do a clinical trial.

We went to Dr. Mehra Golshan and Dr. Margret Duggan, two compassionate and exceptional breast surgeons from Dana-Farber Cancer Institute. We joined forces with Dana-Farber and Faulkner Hospital to conduct a 3-year clinical trial. This led us to finally securing the government approval needed for the Medicare insurance code for the Jacki jacket, just like the mastectomy bra and camisole. The clinical trial was spearheaded by Dr. Donna Berry, the Director at Dana-Farber’s Phyllis F. Cantor Center for Research in Nursing and Patient Care Services. The Center conducts research on quality of life and care for cancer patients and families.

Proudly, the Jacki is now available with insurance reimbursement, with a prescription from your doctor or nurse practitioner, just like the bras and camisoles. We needed to spread this great news! Somehow we need it to go viral.

l-r: Maureen Cardinal and Cathy McGrath

Now Maureen and I are in our 60’s. YIKES!! I am most grateful to be here in my 60’s. A true gift given to me by the dedicated, compassionate nurses, surgeons, doctors, and their brilliant expertise at MGH.

We finally accomplished our goal of making the Jacki available to any woman enduring a mastectomy, without financial burden. We owe our success to hundreds of selfless people who volunteered behind the scenes and guided us through each phase of this unending learning curve. We are so honored to help those amazing women and men fighting not only for their lives, but for their lives back. It is an absolute privilege to help make such a difficult and private time just a little easier.

Learn more about The Jacki at www.thejacki.com