The Redemption Arc

 Episode 6: I weighed 74 pounds at my wedding. Ten years later, the University of Calgary named a research lab after me. This is how I went from surviving on a feeding tube to raising millions for CF research and discovering that my survival meant something bigger. This episode is the story of redemption. Not because I'm special. But because I refused to die on someone else's timeline.

From small wins in weight gain to speaking at CF conventions. From pitching my story to CEOs to starting the Summit Foundation. From galas to a research lab bearing my name.

Transcript

Copy Transcript Copied

SPEAKER_00 0:00

Welcome to Nicole's Notes. I'm Nicole Zeller. In episode five, I told you about that god-awful feeding tube and the 74 pounds I bottomed out at and literally circling the drain. All of this happening six weeks before my wedding. And that garden hose that was hanging off my body ended up saving my life. So when I thought my life was over, it was actually just beginning. Because once I stopped dying, I had to figure out how to actually live. And living meant building something, anything. I meant raising millions of dollars. It meant having a lab named after me. It meant that I discovered that I was no longer just a patient. I was actually a walking miracle. And the world wanted to know how. This is episode six, The Redemption. I married my husband at 74 pounds on July 18th, 1998. The next day was my 26th birthday. I had this disgusting garden hose hanging off my body. I was in so much pain. I was grieving. But I was a tiny bit optimistic. I mean, I still had this demon trying to kill me. Between that and my mental state, it was a fun time to be around me. But I did have a husband who believed in me. You know, I had the feeding tube that was keeping me alive. And I did have energy again. So I just started to live. Now the real work started after the wedding. The first few weeks after surgery, I was managing maybe a cup of nutrition at night. I mean, that's nothing. That's a cup of liquid, but it was something. After two weeks, I was managing two cups and then two and a half cups. I was taking these small wins. After three months, I was actually up to a thousand calories while I slept. A thousand calories. And those were at 80 calories. So let's times that by 10. And it felt like a revolution. But then something magical happened also. My appetite returned. I mean, for months, maybe a year at least, I had no appetite. The idea of food made me want to throw up. I couldn't do it. I didn't want to do it. I actually believe that I had a very unhealthy relationship with food. And partially because of what happened to me when I was a kid, and being young and having my dad or my uncle have to force feed this enzyme powder down my throat to digest the food. I think I still have PTSD about that. And so for me to get an appetite back and to start seeing food as a friend and not a foe, I started to gain weight. My stomach started stretching, my body started remembering what hunger felt like. And so I was able to stop the 24-7 feeds. I switched to just hooking up at night. And during the day I could actually eat real food. Actual food that tasted like something. The pain was still a tin, of course, forever. Every movement hurt. My core had been sliced open. The muscles still bounce back from that. But I was eating. And I and I was starting to see the light at the end of the tunnel, and it wasn't a train. So I reconciled that the tube was needed. The tube was gonna save my life. And in five months, I will be able to get a skin-level tube called the Mickey. So I sucked it up and worked hard at getting the weight back on. I was able to go for a walk without coughing. That was a victory. You know, I could go and do a little workout at the Y. That was another victory. And I could actually make dinner for my new husband and not be completely exhausted. At that point, I felt like I'd won the lottery. I was improving every single day. Every week, I was a little bit stronger. Every month, I was a little bit heavier. Every season, my world was opening up. And I have to tell you, the gaining weight when you are dealing with a chronic illness is just as hard as losing it. And I absolutely hated looking at myself in the mirror, like this skeleton, these bones, these I don't know, this person I never wanted to become. And even today, right now, as I'm speaking, I am dealing with some weight loss. A couple of years ago, I topped out at 56 kilos or 126 pounds. And over the last two years, I don't know what. It could be menopause, it could be the drug, it could be stress, anxiety, I'm not sure. Um, but I'm down to 110, and I do not like 110 pounds. Anyways, I digress. So as I gained weight, my lungs got better. So that allowed us to go traveling. I started golfing. The world opened up for us, and we both felt very optimistic about the future. For the first time in a year, there was, you know, actually a future. We got a new puppy, Scooby-Doo. I had the energy to walk him, to take care of him, to be present with him. My husband's family had a cottage lakeside a couple hours' drive away, so we'd spend our weekends out there in the summer and the fall, walking the dogs twice a day and swimming in the water and doing all the normal things that people do. I was actually doing things I couldn't do before. You know, I was working out at the gym and I had energy to manage errands. I was living a life that, I don't know, somewhat looked normal. I was becoming human again. And it took a year to get over a hundred pounds. Twelve months of these small wins. But it was worth every single day. So I became a stay-at-home wife on long-term disability from the University of Calgary. At the time, I knew I needed to get healthy. I was grateful for the time and the space. So this meant I could focus on the healing. In 2000, two years after my wedding, two years into my new life with my new Mickey, my doctor asked me if I'd be willing to speak at a CF convention in Red Deer, Alberta, about exercise and medication, compliance, and the feeding tube. They considered me an ideal patient. I said yes, sure. So here's the thing: I had been put in front of audiences my whole life. I was, you know, team captain, running events at school. I was an altar girl. Uh I was in fashion shows, gymnastics competitions, so I've had lots of practice being visible. Standing in front of a room full of CF patients really didn't scare me. It actually felt like coming home. I talked about what was working for me, and I shared my story, and people listened. They listened because it was real. I wasn't some distant expert telling them what to do. I was a woman who had been where they were, and I found my way through. That speech in Red Deer opened a door. So I was asked to pitch my story about why a newly formed institute was crucial to Alberta healthcare, the institution of infection, immunity, and inflammation at the University of Calgary. It was renamed the Snyder Institute for Chronic Diseases at a much later time. My doctor was a member of it. He had seen what I'd accomplished. He knew my story, and he believed in me enough to put me in who controlled hundreds of millions of dollars. The room had uh Bill Sembo, who was the VP of the Royal Bank of Canada, the entire bank, Ken King, the president of Calgary Flames, and Brenda Mackey, who was in charge of the Hotchkiss Foundation. These were people who decided where money went, and they had deep, deep pockets. Actually, they were titans in the industry. And so I made a PowerPoint about my journey, about my own philanthropy, as I'd already started my foundation by then. So I had something real to show them. In their eyes, I wasn't just a sick patient. I was a sick patient who was actually doing something. I was trying to make the world around me better for other CF patients. I told them about what the institute was trying to achieve using my firsthand experience as both a patient and a fundraiser. At the time, we were talking about something called bench to bedside. And so that was allowing researchers to, you know, for example, test a drug on my pseudomonas in my lungs and see if it reacts to a drug in the lab. And if it does, then while I'm in the hospital, they could actually give me that drug. So this was monumental at the time. And I think what got through to them wasn't anything fancy about how I spoke. It was the story itself. It was honestly the reality of it. They were listening to me, a woman who had been handed a death sentence at age four and was still standing there, still fighting, still trying to help other people survive what I'd survived. I think people were drawn to that, not to me exactly, to what my life represented. To the fact that I wasn't just talking about resilience, I was living it in front of them. It wasn't inspiration porn. It was actual look at this person, navigate her world, her disease, and still make a difference. After I spoke, Kin King agreed to be my keynote speaker at my next gala. That was a big fucking deal. A big deal. And then they asked me to be the patient ambassador for the entire institution for their $350 million philanthropic called the Reach campaign. I was going to be the face of this massive fundraising effort for the Snyder Institute. I was going to be 40% lung function in a 50-foot banner hanging off the hospital. I was going to be the girl in the brochures, the oyster, the newspaper articles, and in the fundraising letters. I was going to be thrust into all of the marketing materials, sharing my story with potential donors, going to events where the big wigs were asking for money. That was featured in the newspaper and in the institute's main fundraising letters. They wanted my face. They wanted my story. And they wanted the truth and what it looked like to survive. And of course I said yes. But here's what I learned very quickly. When you're facing, when you're the face of someone else's campaign, you don't get to control the message. You don't get to decide where the money goes, and you don't get to choose which causes get funded. I can't look donors in the face and say, your donation is making a difference. I wanted the money to stay local and I wanted to enhance the programs that were being done in Calgary. I wanted donors to know exactly where their money was going and I wanted to see the impact. So I took it upon myself to start my own foundation, the Summit Foundation for Cystic Hydrosis. I gathered a board and we decided to do a huge gala. I learned that people need to feel something when they come. They need to be moved, they need to understand why their money matters. And I had the years from being the athletic events director at UC to draw from. I knew how to put together an experience. I honestly, I was born an event planner. If anybody who knows me, grew up with me, knew that I was the one who had the parties, I was the one who had the treat bags, I've had party in my blood for a very long time. So our mission was simple: to improve the lives of those living with cystic fibrosis, to have more birthdays and more tomorrows, and to keep that money where I could easily tell a donor where it was going and what it was doing. I wanted research, I wanted programs, and I wanted to control that narrative. Our first year we um funded studentships. So researchers in the field of infection, and in particular lung infection, for a summer, and they would do their research. And I mean, these studentships allowed more brains into the field of infectious diseases, and have always said from the get-go, you never know which dollar is going to crack the code with figuring out cystic fibrosis and finding that cure. So over the next 15 years, we raised millions of dollars, money that stayed in Calgary, money that funded research at the institute that my doctor was part of, and money that changed lives. But it all started with this one simple decision. I was not going to let my story be used without my permission. I was not going to let my fundraising energy go to the general pot. I was going to control what happened with the platform I'd been given, and I did. So the media picked it up. So we were featured every year in the page six, and there were several stories about new developments and things that we were doing right there in Calgary at the Snyder Institute. I guess I was becoming the face of CF Resilience in Alberta. The walking miracle, the girl who wouldn't die on schedule. In 2013, at one of my gallas, something happened that I did not see coming. The room had 400 people, and Dr. Coobes, who was the head of the Snyder Institute at the time, was giving his annual speech and letting people know where the money needed to go, what it was doing, and how it was going to change lives. And he went off script. And because I wrote the script, I was wondering what he was doing. And then he put a photograph up on the screen, uh, one with me, and then this plaque on a wall of a building that said the Nicole Perkins Microbial Communities Core Labs. Holy shit. The University of Calgary had named a research lab after me. The Board of Governors had voted unanimously it was done. So as I tried to process what was happening, I just kind of sat there in shock, not understanding the depth of what this meant and how monumental it was. As soon as everyone started standing and giving me a standing ovation, I wept. I was shaking. I was absolutely shaking. And in fact, I went numb. It didn't feel real. My name on a lab where research was happening, where people were working to find ways to kill lung infections and help cystic fibrosis patients live longer. Now, my niece is applying to med school at the University of Calgary. She's going to mention her aunt's lab. She's going to walk past those words every single day. That's the legacy, not the money, not the gallas, not the fundraising. It's that somewhere in the med school, the University of Calgary, the Snyder Institute for Chronic Diseases, there's a lab named after the girl who is supposed to die. And every researcher who walks through that door is going to ask, who was Nicole Perkins? And they're going to learn, they're going to understand that CF matters, that the research matters, that the work they're doing has a face. My face. I went from 74 pounds in a hospital bed to having a lab named after me. That's the redemption arc. Not because I'm special, but because I refuse to die on someone else's timeline. I kept showing up. I believed that my survival meant something beyond just survival. It meant I could help other people survive too. Next episode, we're going to talk about building at 40%. But what happens when your body keeps failing, but you keep fighting anyway. About the marriage I was falling apart while I was doing all this. Thank you for listening. Stay fierce, the world will adjust.