Defining yourself as a person or as a scientist is no easy feat. In this week’s episode, both of our storytellers grapple with who they are and how they want to be perceived.

Part 1: After Fernando Cuevas flunks out of college, he’s worried he’s destined to be stuck at his dead end Best Buy job forever.

Fernando Leonardo Cuevas is a Theoretical Mathematician by degree, Analytical Engineer by profession, and an avid fan of Brazilian Jiu Jitsu, MMA and pointlessly hard video games.

Part 2: When Sonia Rehal’s sister passes from complications caused by the rare disease lipodystrophy, she doesn’t know how to define herself in the absence of her other half.

Sonia Rehal is currently an educator at McMaster University in Hamilton, Ontario and the director for Lipodystrophy Canada, and non-for-profit organization supporting lipodystrophy patients and caregivers. Being a lipodystrophy patient herself, her advocacy for awareness started young. Interested in understanding the pathophysiology of lipodystrophy, her postdoctoral training focused on lipid inflammation and insulin resistance in animal models of obesity. This journey has allowed her to travel the world and publish important research findings in highly cited research journals. More importantly, her academic career has given her a unique perspective to patient advocacy, highlighting how important disease awareness and research funding for prospective treatments and are for the lipodystrophy community. Lipodystrophy can vary in severity however these themes hold in common: Lipodystrophy is incurable, has inadequate medical treatment and affects multiple organ systems. Unfortunately, a severe form of lipodystrophy has affected her family and herself, losing both her mother and sister to its complications at a very young age. This loss has only further intensified her passion to support our rare disease community affected by lipodystrophy.

Episode Transcript

Part 1

Years ago, I used to work as a Geek Squad consultation agent at Best Buy in Flushing. I was proudly underachieving after dropping out of college.

Growing up, I was always told that I was the smart person in school by my family, and so I never felt like I had to work hard a day in my life. When I went to college with that mentality, I failed every single class, and I had to get a job. So, I applied at Best Buy.

Initially, I went into the job with an exit strategy where I would just make enough money to pay back my outstanding debt and then get the hell out. And so I approached this interview, essentially, the way that I approached everything else in my life, I just winged it.

The manager walked into the interview and the first question that he asked, he asked me what the resolution of a 4K TV was in 2015 when they first came out. My rebuttal was, “It depends, because some 4K TVs are cropped and some are True 4K.”

He looked at me and he said, “Oh,” and he was impressed. That's what got me the job at home theater as a sales associate.

Initially, I was a bit of a wallflower, but I was promoted from department to department. Eventually, I found my way to Geek Squad.

This job, to me, was more than just a job. To me, this was my way of essentially finding my way around a degree. This was my way of thumbing my nose at everybody who spent a lot of time in academia and ended up falling into debt. So, this was my way out. All I had to do was get to Geek Squad, become manager, I'd make six figures immediately and I'd never have to worry about what I did or if I made the right decision to leave school.

This idea was completely and absolutely wrong. I found out very quickly that when you work at Geek Squad, all you do is you do warranty repairs, you will occasionally fix the iPhone and then you'll get yelled at by your leadership and your customers. And so the job itself was incredibly monotonous. The job itself was incredibly underappreciated.

I didn't really know what to do at the time. I found myself thinking, “I'm trapped.” I didn't have a choice to leave or not. I felt like because my Geek Squad team needed me at the time, I had no choice but to stay.

Things quickly got worse from there. I was very sad. I was very depressed. I was working with people that didn't like me. I was working with people that were using me. Eventually, I asked myself, "What am I doing with my life?"

After a while, I was working in this Best Buy for about two years, and eventually, I asked myself, "What am I going to do in two or three years? Am I just going to be working as a manager?"

One day, the manager, Ken, decided to have a meeting with everybody. He said it was a pep rally, a pep talk before a Sunday, because working in retail, you need to have that. You need someone to tell you, “Hey, come on a Sunday.” And so he decided to give us his story.

I was shocked because it went a little something like this. He said, “I used to be a student, like some of you in this Best Buy store. And I was an engineer at NYU on my last year. One day, I got the job here at Best Buy and I decided to make this my career instead. And that could be one of you one day.”

I guess he meant that in an inspirational way, but I was laughing on the inside. Then out of nowhere, Gerard, a friend of mine, leans to me and he goes, "Yeah, that's not going to be me." And I laughed because I was like, "Oh, yeah, that's not going to be me either."

Then I took a second and I thought about the choices that brought me to this. That's when things started to snowball. I started to realize that I made the wrong decision.

From there, things just got worse. I was sad. My family saw that I was sad. My friends saw that I was becoming a different person. They saw that I was this guy who would talk to people about the classes that I was taking, when I wasn't taking any classes. I would talk to people about how much I was working at Geek Squad, 39 hours. And I would talk to people about gaming and staying up late until 2:00 AM playing video games. But I was stuck in the superposition of these career paths that just didn't exist.

My family saw this and my friends saw this and they all started to pull back. I knew that I was royally messing up my life and I knew that this reality check would come and it would hit me hard. But to me, in the moment, it didn't really matter because as long as it wasn't coming today or it wasn't coming tomorrow, I'd be okay. I'd be able to keep the facade going.

Over the course of time, people started to see through the cracks and they started to see who I really was. I couldn't hide it anymore. After a while, I started to go back to my old exit strategy. I just needed to make enough money to get the hell out, I could quit Best Buy and I could be free. But the question was, how was I going to make this money? It was $4,000, and I was working paycheck to paycheck. There's no way that I could tell my parents, because then they'd know that I'm a failure.

My birthday was right around the corner and I was getting ready to leave Best Buy anyways, so I knew that if I didn't get enough money for my birthday, I could just find a different way to make money.

The plan was only just to take a laptop. At that point, take the laptop and sell it. No one would know. No one would get hurt. Victimless crime. But that was the moment where I was caught for stealing. I was arrested and I was fired from my dream job at Best Buy, on my birthday.

It took some time to think about how badly I messed up. It's been a while since I thought about it. I can't tell you what I was feeling at the time, but I can tell you what I was thinking. I was really frustrated that I was working long hours, 39 hours and some stolen time, and I was doing this at a store that didn't like me. I was depressed that I had made the wrong decision in my life and I put this time towards a retail store when I could have been putting it towards college.

Finally, I knew in that moment that I made the wrong decision. It was confirmed right there. And as I was being driven to bookings, I asked myself, “Why did I even want to work at Best Buy?”

The question answered itself right there. I was always the one who was told that he was brilliant and I never had to work hard for anything in my life, but not in college. In college, to me, at least, college represents the ultimate test of your intelligence. In that moment, simply put, I just could not seem stupid in front of my family.

It was a sad moment, but one thing was really clear. In that police van being driven to bookings, there was only one thing that was true. I look pretty fucking stupid.

So, at this moment, I didn't know what to do. Then I realized, if I look dumb, I have to be able to at least show my family that I can change, show my family that I can make myself better. These people who trusted me to be smart, I have to make them proud.

So, I immediately enrolled back into John Jay. That was my first move. Taking my first classes was easy. In fact, after my workplace fiasco, it was the easiest thing because, right after that, keeping your nose in a book for some time is the easiest thing.

And so I went right back to my classes. I somehow made a new nuclear group of friends. I minored in Psych just for fun. Then I realized that I was adjusting to my new normal.

Then I walked into Professor Graff's class and everything changed drastically.

In walks this guy. He shuffles past all of the students in a three‑piece suit. He erases the board of notes that were there and he lets everybody know that he's outlining the syllabus, and that if you failed this class, you would have to take it again and everybody who was a math or science major was taking that class.

He warned everybody, not everybody was going to pass. And most of the people in that class had already taken calculus already, so they were ridiculously pissed. But me, I was an idiot who's never taken pre‑Calc at the time so I didn't know what I was walking into.

And so at that moment, I didn't really care what happened throughout the class. I was going to go through it and I was going to find my way.

When he handed the first homework, and it was Proof by Induction, I looked at this and I was like, “I don't know what this is, but all right.” We went to the assessment test and I got a 12. At that moment, I was like, “Okay, this seems like it's going to be a hard class.”

Then I noticed the next week, a bunch of people dropped the class, about half the people dropped the class. But to me, I didn't really care because I was treating college like a video game at that point. And this loss that happened in the first two weeks of class, this was just like that moment in a video game where a boss walks in, in the first level, and he crushes you, because that's what he's supposed to do.

In that moment, I realized that it doesn't matter if you fail, because failure doesn't mean that you lost. Sometimes failure can be the most important mechanic of the game, as long as you learn.

As time went on and as the class moved forward, my curiosity started to be piqued by this professor. One day, he just mentioned superposition and quantum mechanics in a Calc 1 class. And I was like, “Who is this guy? And who could he possibly be teaching in this CUNY school?”

I did what any student at the time who wanted to stalk their professor did, I went to Rate My Professor. I found that he wasn't just some professor. He was the Director of the Math and Science Resource Department at John Jay, which meant that he was the head of everything science and math at John Jay. On top of that, he had a PhD from NYU Courant, which is the foremost school for Applied Mathematics in the world. What the fuck was I doing in his Calculus class? How the hell was I going to pass?

I looked there, staring at the computer screen and I was like, “There's no way I'm going to pass this. I might as well start dropping.”

I opened up the tab to apply to drop the class and I hesitated. I realized I had always been running away from my problems all my life. But for the first time, I didn't want to. Dropping this class would have meant nothing to me at the time, but I didn't want to drop the class because, for the first time ever, the professor was finally getting interesting.

I knew that at one point, I would have to figure out what I was going to do in my future, but that wasn't going to come until a long time from now, so I could just focus on this.

And so as the class went on, he asked me, "Hey, how do you think you're doing in the class?"

I said, "I think I'm doing pretty badly."

And he said, "Just focus on doing better." And that's what I did. I just focused on getting that grade up from a 12 to a 13 to a 30 and so on.

And he noticed it. After a while, he saw that I was doing good in the class and he asked me if I wanted to switch my major.

Initially I was like, "No, why would I do that? I'm doing the speed run of college. This is super important for me. I don't want to take a detour into math and then be screwed, like I did with Best Buy.”

Then he handed me the curriculum for Applied Mathematics at John Jay and I realized that he was going to be teaching every single one of the classes in that curriculum. And in that moment, I asked him what he saw and he said that he saw a student that was willing to work hard.

At that moment, I realized that this professor was challenging me. He was trying to see what I could do because, at one point in my life, I guess he saw that people assumed that I was this intelligent person, but I was never tested. That's when I realized that this professor was someone special because he was the one who was constantly challenging me and he wasn't treating me like I was stupid.

When I saw that he was teaching all the classes in the curriculum, I realized that this was the path that I was supposed to be on my entire life. Somehow, after being lost in this world of retail, I had found my way.

And so that same day, I switched my majors and, from that moment on, the rest was history. It was all just a matter of time.

I quickly breezed through all of the classes. They got progressively easier. And before I could even realize it, I was graduating from John Jay with a degree in Applied Mathematics and Cryptography and Data Science.

And before you could even say “COVID pandemic”, I ended up working at a data science company. They specialized in geographic retail data. But the biggest kick in the, for lack of a better word, testicles, was that the number one, well, one of our number one clients just so happened to be Best Buy. That's when I was like, “Ahh.”

But I took a second to think about it and I realized that life has this funny way of forcing you down a path that you've really always been fighting your entire life. Sometimes, if you're lucky enough and if you just let go and let yourself become the person that you've always been meant to be, you'll find yourself where you least expect it, on a path forward.

Thank you.

Part 2

Thank you for joining me. Let's see. If I'm going to tell you a story, I should tell you how most stories start, right?

Once upon a time, there were two little girls from Montreal, myself and my older sister Liv. We were very close, especially around the age of five our mother died and we stuck together like glue. We did everything together. We played together, we slept together, we danced together. Heck, we even got sick together.

I was about seven, she was about 12, and we're starting to experience those typical diabetic symptoms. We're peeing throughout the night, we're really thirsty all the time, and we're always tired.

We go to the doctors and they not only find out that we have diabetes at such a young age, and Type 2 at that, but that we're an advanced metabolic disease.

So, my sister and I are tossed from one specialist to the next, to the next, to the next without any answers. They're totally baffled. We're like the two zebras in a room of horses.

It's a few years after when, finally, an endocrinologist goes and refers us over to medical genetics at the of Montreal Children's Hospital. I clearly remember it's like a doctor's room like any other. There's these faded Strawberry Shortcake and He Man stickers on the wall.

The doctor walks in and he has the whitest coat. It's almost fluorescent. And he has this face that I think has never smiled before. A few medical residents as well, they come straggling in behind him, you know, to see the two freaks of nature.

My memory is hazy about that day, but there's a few things that are very clear with me. One, firmly, firmly grasping my sister's really, really sweaty hand. My father dissociated on a chair, right next to me, like, totally out of it. And the word ‘lipodystrophy’ being said around the room like it was the word of the day.

It took a few months. Our DNA was analyzed. It was sent to labs and it took about a few months to get the official diagnosis.

I'm 14. Livy is about 19, and we are now officially diagnosed with Familial Partial Lipodystrophy. The geneticist basically starts explaining to us what this is. It's an advanced, very rare metabolic disorder. It starts with, basically, the destruction of fat cells, so I remain skinny for life, but it ends up spreading to critical organs like the heart, the kidneys, the liver, etc. There's no known cure and there's no consensus on medical management and literature.

Even more rare is the fact that this novel mutation has never been described before.

The first thing that I remember feeling is fear. All of a sudden, I have this out of body experience. I see myself as if I'm already dead. It's almost like I'm grieving for a life that I haven't even yet lived. And I'm already thinking about the things I've lost, like having a big family with kids, having a long successful career, having a long life, even.

Basically, the doctor says, "Listen, this is a new mutation. We know nothing about it. We'd love to analyze you further."

Well, what does that mean? That means more blood draws, more scans, more ultrasounds, more medical photography to show everything that's abnormal in a very already insecure teenager.

But I say yes. I say yes, because science is the only thing that makes sense to me at that time. In the depth of fear and all the unknown, science was my salvation. It still is. Oh, my God, that makes me sound so nerdy, but it's so true. Truly, it's my only salvation.

So I agreed to help the geneticist. So I debut in the scientific community, not as an author but as a patient in a scientific clinical study, showing the scientific global community what a freak I was.

Luckily, luckily, luckily, my sister's sweaty hand never left, never lost its grip. We were together throughout. Basically, we go through all of our blood draws together. We go through everything together because we essentially are one.

The biggest thing was I felt like a freak, but so was she. I honestly thought maybe we can make it in the circus, all the pageantry, the lights, but it was nothing like that at all. We both got really sick.

Other than the loss of fat, Type 2 diabetes, we got hyperlipidemia, hypertriglyceridemia, high blood pressure, dangerous heart rhythms. I'm probably missing a few.

We were put on drugs, taken off drugs, side effects galore. The lack of fat made our muscles so painful it was hard to walk. We were basically two girls limping towards this unknown future with the bloodwork of basically 80 year olds.

I take you to about when Liv is about 30 years old. She has this really dangerous heart rhythm and they put in a pacemaker. The follow ups with specialists, they figure out that she's actually in advanced congestive heart failure. They also find out that her kidneys are shutting down, so dialysis for the rest of your life.

She gets pretty weak from being sick all the time. There's these ICU admissions, really scary ICU admissions where I'm like, “I'm going to lose her,” but I don't.

Basically, she gets her dialysis and we're living together at this time. And now she's so weak that she needs oxygen to breathe and a wheelchair. So I make this makeshift ramp, this very dangerous makeshift ramp out of my basement apartment to take her to dialysis three times a week.

I go to my lab, because at this time I'm doing my masters. I'm actually writing the comps to transfer to a PhD in medical sciences, because I love the feeling at science and low key masochist.

So, like I would set up my PCR. Anybody done PCR? It's horrible. I set up a PCR reaction at 9:30 AM and I'd wheel her into her dialysis, and this was our routine for a couple of years. We'd come back home, we would have dinner. I'd make her favorite sandwich, turkey and pesto, and then we'd watch really cheesy Bollywood movies till we fell asleep.

She started to feel better and the doctor cleared her for travel. We go to Montreal. We go visit back and eat all the poutine we can. We go to the Calgary Stampede, you know, to check out the hot cowboys. We get her wheelchair pimped out with SpongeBob stickers and we're just regulars at the mall, right?

It's her 35th birthday. We have this huge birthday bash and she actually gets off her wheelchair. She dances and then she serenaded us with some really awful, awful singing.

She's gone the morning after. I find her body dead, cold and stiff. She's gone. The paramedics, the 911 people keep saying, “Do CPR on her.” I'm like, “She's gone,” but I keep doing it anyways.

The one thing I remember from that morning is I was so angry. I'm literally shaking her violently. And the only thing that keeps coming up in my head is, “Why the heck did you have to leave me alone? Why the heck did you leave me alone? We had a death pact. We were going to go out together. Why did you do this to me?”

The next 30 minutes or so, everything's kind of like a haze, but I end up signing off papers, autopsy options for her, organ donation, and then for the last time I kiss her feet and I say goodbye.

This time, I am now all alone and have no idea who I am. But now, I have a lot of free time on my hands.

I get to those horrible, horrible experiments I was procrastinating for my PhD, so I end up doing all those mouse experiments, those DNA analysis, intravital microscopy, because I promised her. I said I'm going to get that PhD. I'm going to get it, but it wasn't easy.

I, myself, my health started to decline exponentially. In 2015, I have a stroke that literally blows out my sight in my left side, sorry, this side. A few days later from that stroke, I have a major heart attack. They inserted defibrillator into my chest just to make sure I don't die. So, now, I'm kind of immortal. Yay.

But things were getting a lot worse, and so it wasn't easy. It seemed like every time I was looking in the mirror, I wasn't seeing me. I was seeing my sister. And I was seeing her demise looking right back at me. That scared me so, so much.

I finally earned my PhD. Like, oh, my God, it took me way too long. This is in 2016. And I decided to move to New York City to do a two year postdoctoral fellowship. It was so much fun.

And I'm desperate, right? I'm really struggling and I'm desperate and I'm looking for connection. And there's this little Facebook group. It's called Lipodystrophy United. I start randomly messaging people on there and I get to meet somebody in New York. Even though it's a very rare disease, the US, because of the population, has some patients there. So I get to meet this person.

First of all, we look identical. What lipodystrophy does is it gets rid of your fat on your body but it gives you this really nice double chin that we both had. And then we had these like muscular arms and legs and we were both, like, limping and fumbling. I'm like, “This is me.”

We were supposed to meet for 30 minutes and it becomes like a three hour conversation of we had the same damn fears. We'd lost loved ones to the disease and we had this, like, existential dread that death was just around the corner.

That was a changing experience for me and it just kept getting better. I kept meeting more people from people from Lipodystrophy United and I started building my community. I eventually became scientific advisor for the US led advocacy group, and finally started my own in Canada.

That was the first time in my life that I finally didn't feel alone. I could let go of her grip, my sister's grip, and I took that lipodystrophy community and I did not feel alone anymore.

In summary, I'm very grateful that I've outlived my mother and my sister, but I am very well aware of my fragility. I'm telling you a story, right? I'm not going to say I lived happily ever after. I think the best ending I can come up with is that I lived with the support of everyone that loves me and that made all the difference.

Thank you.