In this week's episode, our storytellers' lives and careers in science are shaped by a great loss in their lives.
Part 1: When neuroscientist Macayla Donegan's partner is diagnosed with brain cancer, she's forced to make some tough decisions.
Macayla Donegan is a recovering academic neuroscientist who just lost their spouse to brain cancer, and lost a career she had worked a long time for at the same time. She has a really cute dog if you need a pick me up after that bummer of a sentence.
Part 2: When Anant Paravatsu struggles in school, his mother comes to his rescue.
Anant Paravastu holds bachelor's (MIT, 1998) and Ph.D. degrees (UC Berkeley, 2004) in chemical engineering. His Ph.D. research with Jeffrey Reimer focused on using lasers to control nuclear spin polarization in the semiconductor GaAs. From 2004 to 2007, he worked as a postdoc at the Laboratory of Chemical Physics at NIH with Robert Tycko, where he learned to apply nuclear magnetic resonance to structural biology. Paravastu's early structural biology work focused on amyloid fibrils of the Alzheimer's β-amyloid peptide. He was part of the team and community that showed that amyloid fibril formation is a complex phenomenon: individual peptides exhibit multiple aggregation pathways capable of producing distinct aggregated structures. Between 2008 and 2015, Paravastu worked as an assistant professor at Florida State University and the National High Magnetic Field Laboratory. Presently, his laboratory at Georgia Tech pursues three general lines of inquiry: 1) structural analysis of rationally designed peptides and peptide analogs that assemble into nanostructured materials, 2) nonfibrillar aggregates of the Alzheimer's amyloid-β peptide, and 3) aggregation due to misfolding of proteins driven away from their natural folds.
Episode Transcript
Part 1
In September of 2020, I got a call from my partner Will, and he was confused and slurring his words. He told me that he was on his way to the emergency room and he had had these weird headaches for a couple of weeks.
So I got into a car and rushed over to the emergency room. I met his dad there and it was just like terrifyingly crowded in the times of pre-vaccine COVID.
But we went into this crowded ER just in time for Will's CT results to be read. There was something about the size of a golf ball in his frontal temporal lobe. And whatever that something was was probably hemorrhaging.
My training as a neuroscientist has taught me that you shouldn't have things the size of a golf ball in your brain and it's worse if those things are bleeding. Brain cells don't like blood, which is a really weird feature of a cell dependent on blood for survival.
But anyway, Will got transferred to a neuro ICU at a different hospital and his dad thought that I should go with him because, as a neuroscientist, I might know more about what's going on.
Now, a neuroscientist is not the same thing as a neurologist. I am not a medical doctor. So I think this knowledge is more limited than people tend to assume. But I did know enough to know that Will's neuro exams were getting worse as the night went on.
I told this to a nurse and I asked her what they were going to do. Then she kicked me out, because we weren't married, and told me to send his dad up.
Macayla Donegan shares her story with a limited audience at at The Tank Theater in New York City in February, 2022. Photo by Zhen Qin.
Because of COVID visiting rules, they kicked his dad out soon too. And just in the confusion of things, he ended up taking Will's wallet, shoes and phone with him downstairs. Then I had to get into a fight with a security guard to let me upstairs. I was in like a hospital lobby screaming, “He has a brain bleed and no one to advocate for him. At least let him have his phone.”
A doctor getting coffee in the lobby heard me and told the security guard to let me up.
When I got up there, Will told me that he loved me for the first time. This was the end of a long game of I-love- you chicken and winning didn't feel as good considering he had a brain bleed. But I said it too and the nurse let us hold each other for a minute before she kicked me out again.
Then I went home and I cried in between my two roommates. We were all laying in one full‑size bed, which is how we used to like to watch TV together.
The next day, we went back to the hospital and Will could barely talk and was rushed to emergency surgery. I don't remember a lot about the hours that Will was in surgery except we weren't allowed to wait at the hospital, so Will's dad and I went to get lunch and my friends and Will's friends came to wait with us.
Then they called us and we went back. And Will was doing so much better. It was amazing to me how much better he was doing just several hours after having his skull cracked open. And, importantly, he still loved me without a golf ball-sized tumor pressing on his brain.
A little while after this, Will was diagnosed with an aggressive form of brain cancer called glioblastoma. If you Google it, you'll run into some really fun phrases like ‘invariably fatal’ and ‘dismal prognosis’. Even so, we were told we had every reason to be hopeful, and we were. Will was so young and healthy otherwise.
He started radiation and chemo and he got tired and nauseous and his platelets dropped to dangerously low levels, but he still insisted on going rollerblading on the roller blades he bought me for Christmas. After that, he got better for a while and he got to go back to being a second‑grade teacher.
He loved being a second-grade teacher, even on Zoom. I think everyone hates Zoom teaching, except for maybe me because it let me watch him make cute and well-executed content for kids, which was way hotter than I thought it was going to be.
I, on the other hand, really struggled with my return to work. Like I mentioned earlier, I was a neuroscientist. My job entailed of drilling into the skulls of mice to implant things into their brains, sometimes dissecting those brains out and cutting them into small enough pieces to look at under a microscope. And just a lot of talking about brains, like how does it work? What parts are important for what?
And being a neuroscientist wasn't just my job. It was a massive part of my identity and it had been for a long time, probably since I was a freshman neuroscience major in my first lab job. And I think academic science kind of demands a large part of your identity because of the sacrifices you have to make for it. It's a lot easier to swallow a system that's going to demand that you work really long hours for pretty crappy pay and just move wherever you're going to get a professorship, and also just tolerate sexual and racial harassment because the job is who you are.
And I wanted it. I wanted to be a professor. I wanted to answer interesting questions. I loved advising students and I wanted to create a better scientific environment than the one I grew up in.
But, suddenly, this thing, this career that I had centered so much of my identity around felt a bit traumatic at every turn. I would cringe when someone would talk about the area of the brain that the tumor was found in. I could not stomach doing a craniotomy anymore. And sometimes I still feel uneasy hearing the word ‘brain’, which isn't a good thing if you're a neuroscientist.
I told some version of this to my advisors, which is what you call bosses in academia to pretend that they aren't people who control your health insurance and salary. I told them that I was thinking about looking for a new job, something with better pay and more job security. But, mostly, I just wanted something that didn't remind me that the person I love has cancer all the time.
I offered to analyze data for people so I could do some work for them while avoiding the parts of my job that were the most difficult for me. I started applying for jobs in the spring of last year and did a bunch of interviews. Made a lot of mistakes but ended up with a few job offers.
Macayla Donegan shares her story with a limited audience at at The Tank Theater in New York City in February, 2022. Photo by Zhen Qin.
But then Will's cancer came back and we were still hopeful but also terrified. I had to turn down the couple of job offers that I got. It turns out, supporting someone with brain cancer also demands a large part of you. But instead of publishing well and being the 5% of us who get good professorships, it was the health and well-being of the person I loved. I'm not saying what people do in academic science isn't important. It really is. But Will was more important to me.
And I also think the distance that Will being sick put between me and my career made me realize that the career I had wanted for so long just didn't exist. That the support and freedom promised to me in academia just disappeared when I really needed it.
I told my boss that Will got sick again and he said, “Take all the time you need.” Then two weeks later, asked me how my job hunt was going, and I wasn't. I couldn't work. I couldn't look for jobs. I was staying up late looking at Will's MRIs and googling experimental treatments and trying to get him on clinical trials.
I'm a researcher. I pride myself on being a person who can find answers. I was so desperately clawing for an answer in this situation and I just came up empty over and over again. It took me so long to grasp that some problems just don't have solutions.
I asked Will to marry me, three times. Two of which were on a hospital bed. He seemed to think that he should focus on recovering from two brain surgeries in six weeks first, but he did say yes right before his third brain surgery, after trying to convince me that it's pretty silly to marry someone with cancer and that I had a lot of time to be married after he was gone. And I had to tell him that that was silly because I only wanted to be married to him.
I got a marriage license by DMing the New York City clerk on Twitter. Never thought Twitter would be a part of my marriage story, but here we are. Because all of the appointments were still virtual at that time for marriage licenses. All of them for the whole summer were taken and we needed things to move a lot faster. But she set it up and we got a marriage license.
Then we got married in my parents’ backyard. We wore tiaras that my mom bought us because our wedding rings weren't going to be done in time. And we were sad that it had to happen under these circumstances but also pretty happy to just be together.
We got a summer together and then in September my boss emailed me that he wanted to meet. This was about a week after he told a professor friend of mine that he would do whatever he could to help me. So I went in to see what help would look like.
He told me he wanted me to have a plan, which I'm pretty sure meant I had to get a new job. I tried to retort that terminal brain cancer isn't exactly a plannable situation. Our personal life had gotten to the point where I really couldn't work anymore. My days were full of going with Will to treatments and scans and scheduling doctor's visits and helping him with his phone when his head hurt too much or when he couldn't bend down to pick things up.
So I went back in November and I told my boss that my plan was to take family medical leave and then be unemployed if I had to. And then he actually responded with, “Have you looked into what people do in these situations?” I had, and it is take family medical leave and then be unemployed if you have to.
He seemed kind of shocked by this, that people have to pause careers and not make money to take care of a loved one. I don't blame him for this. In academic science, there's no management training. You're just kind of thrown into a situation where you're in charge of the lives of a bunch of people, but he didn't even know what FMLA was and so he couldn't help me navigate that system.
I was already drowning in paperwork for insurance and doctor's appointments and Will's disability and it felt like this career that was supposed to be so flexible suddenly became really rigid when I admitted that I couldn't do it the way that I originally had planned.
I know most people haven't been dropped into a Nicholas Sparks’ novel at this moment, but I don't think I'm alone in being frustrated with the narrative about people quitting their jobs right now. All of these think pieces about the great resignation talk about this as a time of empowerment for workers, but when I finally sent in my resignation I didn't feel empowered. I felt sad. I had felt frustrated. I had just been in a situation where I had to take job interviews while deciding whether or not to put my spouse on hospice.
People have asked me a lot if I've felt like I've lost some of myself in this, and a lot of them I know meant my career ambitions, and the answer is yes, but not because I had to let go of a work‑centric identity. I lost part of myself because I watched the person I love go through pain and uncertainty. And we had to say goodbye to a life that we had planned together and settle for one full of brain surgeries and drug side effects and slow walks around the block instead of going backpacking and for long bike rides and staying out past 9:00 p.m.
I chose that and I still would if I could, but recently I lost Will too. And let me tell you, losing the love of my life took a lot more from me than losing my career did. And the fact that Will died is terrible. I think in these moments, people look for something to distract from this kind of terribleness. I think it's because it's a reminder that life can just be randomly cruel.
And looking at career uncertainty, something with a solution is so much easier than looking at something that's a reminder that everyone you love will die someday, and maybe sooner than you planned.
I don't have a pretty bow to wrap around this. I'm not sure what the lesson is. I also am pretty frustrated that we as a society try to extract lessons and growing experiences out of grief. No lesson would be worth Will dying.
I can tell you that I wish there was more support for people leaving traumatizing or hazardous careers right now, like healthcare workers and service workers during the pandemic. I wish people knew how scared I was and just how little space I had to think about a career while all of this was happening. And I wish we didn't have to hide terrible things that are happening to us for the comfort of others or for the sake of productivity.
Thank you.
Part 2
My third-grade teacher asked us to read a story in class. It was a wonderful story. In fact, if you love reading like I do, it was the kind of story that made time stand still and made you forget about everything. It was a story about a girl walking to school, just a normal girl in a normal neighborhood, but she had the most amazing imagination.
About halfway into the story, my teacher started asking questions. It was a little bewildering at first because I wasn't finished. But as she asked questions to the students in the class and they answered those questions, it became clear to me that everyone else was finished with the story.
My teacher asked me a question and I couldn't answer because I hadn't finished the story. She got mad at me. She thought that I hadn't read the story or that I wasn't taking it seriously. Well, that was half true. She kept asking me questions and, eventually, she started asking me to read out loud.
The other kids started laughing at me. I think the teacher was trying to help me. I think the other kids just didn't understand. But somehow, I couldn't read at the speed of other people. I couldn't read out loud because I couldn't read as fast as I could talk. So there was a lag between my brain and my voice.
I felt cursed, ashamed, terrified. My mom was the only person who seemed to understand. In retrospect, I don't think she understood. I think she did what mothers do and she made it work. She read to me. She read the story to me. And she read the next story to me the day before we discussed it in class.
As time went on it, became harder to predict what story we'd be reading in class so she read the whole book. And then she read all of the books I was assigned to read. This went all the way through high school. She would read 100 pages a week to me and I would listen.
Anant Paravastu shares his story outdoors at Waller's Coffee Shop in Atlanta, GA in December, 2021. Photo by Rob Felt.
I don't think I understood this at the time, but it was actually a really good deal for me because what child doesn't love hearing his mother read stories. In fact, it went beyond school. It went beyond the stories that I was assigned to. She started telling me stories from her childhood, books that she loved. Stories about her life, mythology that she had learned from her mother and it was actually quite wonderful this curse of mine.
But it was one of these things where it was wonderful at home but not so wonderful at school. My mother helped me cover it up and helped me hide it but I knew it was there. I was terrified that people would discover this secret of mine.
So, like a ninja, I learned to hide in plain sight. I learned that there are certain places where people don't think stupid people can be. For me it was physical science and math, because these are subjects that don't require a lot of reading. These are subjects that confuse everyone, not just me. They didn't confuse me any less but I could fit in.
And I worked really hard. You know, people have all kinds of interesting stories about how they were inspired to do science. I think it was really fear that inspired me to do science, but it worked. I really loved these subjects.
What I loved most about them was just how logical they were, how much they made sense. Not initially, but if you put in the time and effort the rules became very predictable. The consequence of the rules became very predictable.
So through many, many years of quite a lot of hard work, I got something that I really wanted very badly. I got admitted to MIT. It was almost like the ultimate certification that I wasn't a moron.
Interestingly, this thing that was such a big deal to me, my mom thought about it very, very differently. And there were two reasons. One of them is hard to explain, so I'm going to try to explain it by telling you a story. I realize we're already telling a story, but I'm going to tell you a story within a story.
The story is about a little boy and this was a very mischievous boy. One day, the other villagers told his mother that he had been eating dirt. And I have two boys myself and that happens. His mother got very, very mad and asked him and he denied it.
And like most little boys, this little boy had very little credibility. So his mother asked him to open his mouth and inside his mouth his mother saw a lot more than just dirt. She saw the universe, everything, the earth, the stars, the sun, the solar system. Everything.
My mom believed this story quite literally because she believed that God was the universe, and the universe as God existed in all living things, including little boys. To her, God was in every living thing. It was the difference between being alive and being an inanimate object.
As someone who was raised on a farm, she saw God in the animals. You should see how she treated our dog. She named him Rajah. Rajah means king and she treated him like a king.
She saw God in her student. She was a teacher. She saw God in the plants. I remember we lived in the Washington DC area and somehow she could make a banana tree and a coconut tree survive DC winters. I didn't even know that that was possible. I have to admit, it was inconvenient because it was somewhat hard to watch TV with the leaves of God in the way.
But she just had this miraculous ability to see the miraculous in the most ordinary things. Can you imagine that, for someone who saw things that way, that MIT wasn't such a big deal?
The second reason why my mom didn't see it the way I did is easier to understand but harder for me to talk about. She didn't actually want me to be an engineer. She wanted me to be a doctor. She had spent a lot of time with doctors. She had a rare disease and this disease is called alkaptonuria. If you haven't heard of it, I'm not going to explain it. I'm glad you haven't heard of it.
Around the time she had children in her early 30s, it manifested like very severe arthritis. Over the years, doctors had to replace all of her major joints. They had to replace a heart valve. The sound of it would keep her awake at night. There are lots of visits to the emergency room. Lots of surgeries. When she was really tired after surgeries was when I would tell her stories.
Needless to say, she really admired the doctors that took care of her and so did I. I remember Dr. Murrow, her general practitioner. Our family used to refer to him as her second husband. She would rattle off all the medication she wanted and he would stand there with his pen and paper just trying to keep up with her.
So I wanted that too, in a sense. I wanted to help people the way doctors do but biology wasn't a good hiding place for me. I considered myself pretty lousy at it.
So MIT may not have been my mom's dream but it was certainly mine and it was a wonderful place. I think what was most wonderful about it is that everyone there feels stupid. I discovered chemical engineering, which is a subject where people can help others. I worked really hard and I met some very, very amazing people. MIT did me a favor by telling me to get lost after four years.
I went to Berkeley, and I remember the summer before Berkeley I read an article in Scientific American. As an engineer, I had not learned a lot of quantum mechanics and so this article was about quantum computing and how subatomic particles work. How they live in these weird two‑dimensional existences. Their states, their orientations depend on how you look at them and completely violated my sense of scientific logic and objectivity.
I remember it actually made me mad and I struck up a conversation with the professor about how physics shouldn't be so temperamental. This professor became my advisor and supported me a great deal in coming to terms with it. I don't really feel like I understand it even now but I have learned to come to terms with it.
This whole process was a big healing process for me, I think. I also realized that my mom would have made an amazing scientist. She understood something intuitively that I really didn't. I approached everything with a lot of preconceived notions. My brain should work a certain way. Science should be a certain way. My mom never felt that way. I don't recall her ever thinking that I should think a certain way, or at least she never really expressed it.
She was a problem solver. She took things as they were and she just made it work. In fact, I think that's what all mothers do, isn't it?
Anant Paravastu shares his story outdoors at Waller's Coffee Shop in Atlanta, GA in December, 2021. Photo by Rob Felt.
So I did something that I really shocked myself at that time. I thought I would never ever work in biology, but Berkeley had done something very special for me. It taught me how to enjoy being the dumbest person in the room. How to work on things I knew nothing about because that means that everyone else is educating you constantly.
I applied to be a postdoc at the National Institutes of Health. That was a homecoming for me. I grew up in the DC area. In fact, I had gone to NIH many times with my mom. They study rare diseases at NIH and the doctors took great care of her. And there was a new opportunity to use spin physics to do structural biology to study structures of proteins associated with Alzheimer's disease, so it was a chance for me to contribute to medicine. So I did that and it was really uncomfortable but I learned a lot and it was amazing.
I'm going to fast forward. I became an assistant professor, moved to Florida, eventually transferred to Georgia Tech. That was my wife's doing. And I finally convinced my parents to move to Atlanta. The Botanical Gardens were helpful. I took my mom there and she loved them.
About a year ago, I was invited to give a seminar at the Lawrence Berkeley National Lab. So I went to Berkeley. That was also a homecoming. And I remember watching the sunset over the bay from the Berkeley Hills. If you've never done that, you should.
I got a phone call. It was a nurse telling me that I was going to lose my mom that night. Now, my mom had been in the hospital in the emergency room many times. This wasn't unusual. She had survived so many things. I haven't mentioned cancer but she survived that too.
I called an Uber. I booked a flight leaving at 2:00 a.m. And through the blinding pain, I remember the Uber driver telling me that she had worked as a critical care nurse and that, as unpleasant as it was, there is a certain beauty to death. And that reminded me of a time when my mom explained to me that the God of death was not evil. That death was just as important to life as birth. My mom had the wisdom to know where evil couldn't be found.
The terminal at SFO was another sacred place for me because it had been a place where I had so many memories of returning home. So maybe it was a little fitting that that was also the place I said goodbye to my mom over FaceTime.
So out of respect for my mom, I feel I have to represent her feelings. She's not here. My mom would have hated this story. My mom didn't believe people should be glorified, especially not her. And she would have been very clear to me that she believed that. Like most sons, I would have come prepared with a comeback. I would have told her that there is nothing extraordinary about being extraordinary.
If you knew my mom you would know she wouldn't have bought that at all. She couldn't really be defeated in an argument.
I want to tell you one more thing. This is for the people who have lost a parent. I want to tell you what my son said, how he expressed his feelings when he saw the big tank at the Atlanta aquarium. He said God is in the fish. I'm not the only little boy who enjoyed her stories.
Thank you.