A sudden illness casts doubt on whether Maia Pujara will be able to finish her neuroscience PhD.

Maia Pujara received her Ph.D. in Neuroscience from the University of Wisconsin-Madison, where she developed a passion for science outreach, science communication, and promoting women and underrepresented minorities in STEM. She's a postdoc at the National Institutes of Health to study the brain regions that are critical for helping us regulate our emotions, learn about rewards, and make flexible, adaptive choices. Though focused when it comes to academic matters, Maia has always had a “breadth-over-depth” philosophy with hobbies and has so far taken up playing the guitar, playing the ukulele, radio DJ-ing, baking, mixology, palmistry, watercoloring, knitting, crocheting, ice-skating, ultimate frisbee, improv, acting, and screenwriting. Follow her on Twitter @neuro_sigh

This story originally aired on Dec. 8, 2017 in an episode titled Doubt.

Story Transcript

It was at the precise moment I found myself buying women’s laxatives at a CVS in San Jose, California, that I realized I had more than just a tummy ache.  You see, in the four years leading up to that very embarrassing purchase in a hot pink box, I had been focused on one thing, and that one thing was not my health.  It was on finishing a PhD in neuroscience. 

I had finally mustered up the courage to tell my adviser that I wouldn’t be doing a postdoc.  And I saved the worst bit of news for last, which is that I would be applying for a science writing internship in Washington, D.C., that would be starting that summer, which is why I needed to finish the degree on time so that I would be free to go on to do whatever it is I wanted to do with the rest of my life. 

So all of this kind of felt like the way I would imagine it must feel to tell your conservative dad that you're going on tour with the Grateful Dead.  No matter what, you’re just going to be a source of constant disappointment from that point forward. 

So I prepared in the mirror.  I went over what I was going to tell him.  You know, I wasn’t just running away from lab.  I had a plan.  I had prepared a set of calendar pages and, in our second worst meeting that we’d ever have, I handed over those sweaty calendar pages that chronicled February through May.  They told of two data sets that would be analyzed and written up for publication and they told of the writing timeline leading up to my proposed defense date in May.  So I had it all planned out. 

He sifted through the calendar pages, and after a really, really brutal round of questioning to make sure I'd thought everything through, he finally said okay. 

Relieved, I got up to walk out, and on my way out he added, “You know, this is gonna be a rough few months for you.” 

So those words became my fuel.  I was determined to prove him wrong.  And with the sense of newfound blind determination, I skipped out on one very important thing in order to meet my deadlines and that thing was lunchtime.  You see, if I skipped out on lunchtime I have more time during the day to actually work on what I needed to. 

And because I was blasting right through lunchtime to crunch those numbers, I would reward myself for all that hard work at the end of the day with these big, Wisconsin-style, greasy meals and I'd wash them down with a couple bottles of beer.  That went on for a few months and I slowly just started to develop the slightest twinge, just the littlest bit of pain in my abdomen that, with my large mammalian brain, I did a really good job of ignoring. 

That is until that fateful night in San Jose.  I was there at a conference with my boyfriend at the time, now my husband Ben, and not two nights into the conference I woke up with like this sharp, horrible stabbing pain.  A pain that I couldn’t ignore anymore. 

So I turned to him. I was really scared and so I woke him up and I said, “What do I do?  I don't know what this is.  I've never had this before.” 

He was really sleepy so he just kind of turned around and said, “I don't know.  Just maybe walk it off and take a poop?”  Our love language is talking about our bowel movements and so, to me, that was totally normal. 

I took his advice and I walked around the hotel room and tried to take a poop with no luck.  That’s when we went to go buy the laxatives.  I took the laxatives and tried to go back to sleep and, after a couple of hours of fitful rest, I got up not with an urge to poop but with an urge instead to reach into my stomach and pull out whatever was causing me the worst pain I'd ever felt in my entire life. 

I left the hospital after what would be the first of many hospital overnights with two pieces of paper about acute pancreatitis, which I'd never heard of before.  Inflammation of the pancreas.  But no clear reason about what was actually causing it. 

Soon after that, I couldn’t keep any meals down and the pain got so bad that I was forced to get most of my caloric intake from things like fruit juices and Jell-O, which a middle school version of myself would have loved that diet.  I guess it was appropriate because, by the time I lost all the weight I lost, I looked like a middle school version of myself. 

The University of Wisconsin Madison, where I was going to school at the time, is a teaching hospital so during one of my longer stays there a group of residents crowded around my bed as the senior doctor told them that I was a mysterious gastrointestinal case.  My pancreatitis remained unexplained. 

To me, it felt truly absurd that these people, who had all this collective knowledge among them, couldn’t tell me what was wrong with me any more than a few days of frantic Internet searches could.  I was terrified. 

And because I presented with some of the symptoms of patients with severe alcoholism, a lot of doctors told me to stop drinking.  I hadn’t touched a drink in months.  This frustrated me to no end.  I really just wanted an answer. 

And because I was so sick, I eventually had to tell my adviser, I had to confront him and tell him that in person, in what would be the actual worst meeting we've ever had. 

I went to his office and I told him, no, I didn’t know what was wrong with me.  I didn’t have a clear diagnosis.  And no, I didn’t know when I'd be back in lab.  And no, I hadn’t heard about that science writing internship yet.  And no, I’m not going to finish in time to defend by May. 

As I told him all this, I was met with a stony stare and slight whiff of I-told-you-so in the air, and I couldn’t help it.  I just started crying.  And I prided myself on never crying in front of Mike.  Not once.  No matter how bad our conversations got.  But at that point, instead of him coming around from his side of the desk to pat me on the back to tell me, “You know, everything is gonna be okay.  We’ll work something out.  Just focus on your health,” he just kind of sat there in silence while I cried. 

I left his office feeling like a total and complete failure. 

At the lowest point I got, I ended up calling one of the doctors and kind of just sobbing into the phone and saying, “Am I gonna eat anything ever again?  Am I ever gonna feel better?” 

I remember, in hindsight, I must have sounded like that kid in the viral video who was under the influence of anesthesia and was just like, “Is this gonna be forever?”  Because the doctor just laughed at me and said, “You're gonna be fine.”  But looking down at my knobby hands I’m sure he's seen worse, but I didn’t know what better looked like at that point. 

So after several needle pokes and blood tests and hospital stays later, I finally, finally got a diagnosis.  Celiac disease.  Celiac disease is an autoimmune disorder that affects anybody who ingests gluten.  Basically, the body attacks the small intestine in the presence of this protein called gluten.  Gluten is found in a lot of things like pasta, bread, beer, soy sauce so basically anything delicious.  Yeah, it’s true. 

Unfortunately, by the time my diagnosis was given to me, the inflammation from my pancreas had spread to my gallbladder and my liver and I had to have my gallbladder removed.  The reason it took so long for me to get a diagnosis was because I was in the less than 1 percent of patients expressing the symptoms that I had.  Most patients with celiac have really bad gastrointestinal symptoms that I won’t go into because you're eating.  But suffice it to say that, because of that, it took a long time. 

It turned out that the combination of genes I had from a Hispanic mother and an Indian father incurred greater vulnerability to the disease and things like anxiety, stress, and a poor diet only made it worse.  So to put it another way, nature and nurture had a really shitty party in my small intestine and I was their special guest. 

But through all of that, once things got better with the support of the best partner, friends, and family and all the right treatments, I started to get better.  And I also found out I got accepted to the science writing internship and I'd be going to Washington, D.C., that summer so really things weren’t all that bad in the end. 

Throughout all this experience, what I learned was that things like good health and important milestones are not things that somebody gives you permission for.  They're things that you give yourself.  Because I'd set a milestone I really wasn’t ready for, I only set myself back more in the long run. 

So, as I packed up my things to go for that summer, I came to terms with the fact that brain work would be there when I got back.  It was time I started paying more attention to my gut. 

Thank you.