This week, we present two stories about dark moments in science.
Part 1: Astrophysicist Jesse Shanahan tries to uncover the mysteries behind both the black holes she studies and her own chronic pain.
Jesse Shanahan is a science writer and astrophysicist, currently serving as a Coordinating Committee member in the Working Group on Accessibility and Disability that she co-founded for the American Astronomical Society. Her writing can be found in Science, Astronomy Magazine, and Forbes amongst others. In addition to organizing STEM outreach in local elementary schools, she works on behalf of disabled scientists to facilitate accessibility and accommodations in STEM. Outside of her research on supermassive black holes, she spends her days wrangling a very high energy Border Collie named Hubble and playing way too many video games. Follow her @enceladosaurus.
Part 2: Comedian Sarah Pearl checks into a psychiatric hospital after having suicidal thoughts.
Born and raised in St. Louis, Sarah Pearl is an up-and-coming comedian, musician, and storyteller. She's performed throughout the Midwest, most notably at Laugh Factory Chicago, Helium Comedy Club, and one time, a back porch without a coat during winter. Her honest and sardonic style has been referred to as, "kind of sad, but really funny." Sarah will be debuting the story of her experience with mental illness and she hopes the storytelling class she took when she was eight pays off. You can follow her at @standupsarah.
Episode Transcript
Part 1: Jesse Shanahan
I think everybody here probably has one of those days that you'll remember for the rest of your life. This is the day that I will remember for the rest of my life.
I remember it was the first Tuesday in September of my senior year of undergrad. It seemed like a normal morning. I woke up, the alarm ringing too early, as the alarm always rings too early, and I try to sit up. I couldn’t. I tried to roll over and I couldn’t. Any attempt to make any sort of movement generated the most excruciating pain I've ever felt in my life. I’m talking my whole body ached in a way that, I mean, I've been injured a lot and I had never felt anything like this.
I was an athlete all through high school. I played three varsity sports. In college I played ice hockey and rugby, which terrified my mother. I was used to having a certain amount of control over my body. Even when injured I knew, okay, sprain, four weeks, maybe three if I push it. Okay, a break. I can wait a little longer. I knew what my body could do and if it hurt I knew why, but this time I had no idea what was going on.
Yes, I made it out of the bed eventually and I made it to my doctor who told me to take ibuprofen and go home. I then got a whole barrage of imaging scans, blood work, you name it and was told, “Go take more ibuprofen.” I kept pushing and pushing and going to different doctors and different doctors and I got told everything from, “Take more ibuprofen,” which was getting really old at this point and also doing nothing.
I remember the first super professional spinal specialist I saw told me, “Your upper back looks great.”
I said, “That’s not the problem. My lower back is what hurts.”
And he says, “Well, everybody’s lower back looks different so take more ibuprofen.” It seemed to be really like a theme of those months.
The hardest thing I think about it was that it never ended. Every day I woke up, the pain was there and every time I went to bed, the pain was there. As time passed, it became my normal.
Like I remember having this conversation with a really close friend at the time and I broke down and I said, “I had this dream last night and in my dream I was in pain. And now all of my dreams I’m in pain.” And I said, “I can’t remember what it feels like to not be in pain anymore. Like this has become my normal.”
Of course, I decided that the smart thing to do at the time would be to switch careers completely. So I left linguistics and I switched to astrophysics. Yes, that was quite the career switch but I did land a really great research position studying the objects that I think I'll spend the rest of my life trying to figure out, and those are super massive black holes.
So, not to break the rule of no learning at Story Collider but I'll tell you a little bit about them because I think they're amazing. They're some of the most energetic, luminous, exotic objects in our entire universe and they exist at the center of pretty much every galaxy. Here’s the thing about them, though, is that in astronomy we have a very specific way of finding them. We look for a very characteristic signature.
But of course I can’t like the easy way to do things and so I like the galaxies and the black holes that are really dusty and really gassy and maybe just tilted ever so slightly the wrong way so you can’t see that characteristic signature. Instead, what you have to do is you have to analyze every bit of data and come up with a portfolio, symptoms, if you will, of the black hole.
As my research progressed and I learned and learned more and more physics and math than I ever thought possible, my disease progressed as well. I learned very quickly that the physical pain and the physical symptoms weren’t the worst part. The worst part was the stigma and the reaction of people who looked at me and saw somebody that looked fine when I kept saying I’m really not fine. It’s like having a massive migraine and trying to tell somebody I have a headache and they go, “Well, you look fine. You're fine. All the doctors are saying you're fine. There's nothing wrong. Everything coming back normal.” But you know deep down inside of you that, really, things aren’t fine.
Slowly, as I saw more and more specialists, basically for every new symptom that arose they sent me to a different specialist. So I've seen a dermatologist, I've seen internal medicine doctors, immunologists, geneticists, neurologists, the list just goes on and on and on, and so does the medical bills, but the interesting thing that started to happen was that some weird things did start to catch my doctor’s notice.
In one particular case, I had a spinal specialist want to do a procedure on me. This procedure is considered noninvasive, but I beg to differ. Basically, it involves a needle about this big that they insert into your spine about thirty to forty times. Ideally, you're numbed the hell up and you don’t feel anything and you are doped up and it’s great. Here’s the thing. My disease, I’m resistant to anesthetic and anesthesia. They didn’t know that.
So the first thing I got told was, as four nurses were holding me down and I was screaming, that, “You're hysterical and you need to stop,” like a little girl. You know, “Stop sobbing.” But he gave me more and more sedative. In fact, he told me after the fact that a standard dose is a quarter of a milligram and he said, “typically by a milligram most people are asleep.” He gave me eight and my heart rate was 165. He said it was like tranquilizing an elephant, and that became my nickname at that office was the elephant.
Photo by Michael Bonfigli.
Unfortunately, the doctor didn’t go anywhere with this, but for me I had another clue. And that’s the thing is that while I was learning this technique in my research of taking a mysterious object and, instead of just observing it, extrapolating backwards from the clues I was given to some cause, ideally a black hole, but often not.
I began to think differently about my health problem. Instead of continuing to just get bounced from specialist to specialist who each looked at a single symptom, I applied my own research technique to my body. I looked for a single cause that could cause all of these different symptoms.
It wasn’t easy. It took months, probably even over a year, and it took a lot of reading medical journals which, as an astronomer, why do you have so many medical journals? We have like five. I mean, there's like The American Journal of Genetics and The Genetics Journal of America and the North American Journal of Genetics, and I’m sitting here like I am so lost because we have literally five.
But eventually I stumbled across an answer. The reason why my doctors couldn’t find it is that it was hiding in my DNA. It’s a rare genetic mutation in my collagen protein. Collagen, yes, it’s the stuff people inject in their face and I can’t tell you how many times when talking about this I've been told, “Why don’t you just get collagen injections?” It doesn’t work like that.
For me, the literal blueprint in my body’s genes for collagen isn’t right so whenever my body manufactures collagen it makes it wrong. The problem is collagen is in your connective tissue and your connective tissue is everywhere. So it means if your connective tissue is broken, your everywhere is broken, hence all of the symptoms and all of the pain.
So this entire time that I was protesting to people like I’m really not fine, it’s not normal to wake up with your shoulder dislocated. It’s not normal to just wake up one day with rashes all over you. These things aren’t normal but doctors often don’t connect all of those different pieces, especially if the problem is connective tissue, because you can’t image it. It doesn’t show up on an X-ray and it doesn’t show up in an MRI and the only way to really get diagnosed is for a doctor to have that eureka moment and go, “I think I know what this is,” and no one ever did.
So I did bring my portfolio of evidence, much like my portfolio of research to my doctor who referred me to an internal medicine doctor who made what’s called a clinical diagnosis which, for genetic conditions, means they don’t do that gene test. They just kind of look at the symptoms and go, yeah, I think this fits.
But after a two-and-a-half-year waitlist to see the only geneticist in the United States who studies adults with my condition, I got my genetic confirmation in November. This entire time that I had been dealing with this, if there's one thing I remember, it’s how afraid I was. I went from being adventurous and maybe a little thrill-seeking and loving to take risks and putting my body in all kinds of harm’s way just because it was a sport and it was fun, I went from that to anxious and fearful of anything that could make me worse. I didn’t go outside. I stopped doing pretty much everything because anything that would make it worse was something I didn’t want.
Although my condition is progressive and it’s incurable and there's no treatment, having a diagnosis I’m not afraid anymore. It gives me my control back. In a sense, I’m not afraid because it’s not unknown. I know what’s going on. I know why something hurts.
This really, really puzzles me as a scientist because as scientists, pursuing the unknown is the basis of research. The things we don’t know are what excite us and what inspire us. They're not what we should fear but when it happens in my personal life I was paralyzed by fear. But in my research, it’s something that I chase after. It’s very interesting to me because it’s that pursuit of the unknown, despite our fear, that gives us technological progress and gives us advancement of our species. But in my personal case, it saved my life.
Part 2: Sarah Pearl
I was four years old the first time I mentioned that I wanted to die. I told my mom that I would rather be dead because I wanted to be with my grandma in heaven. Eleven years old, the first time that I fantasized about jumping out of my family’s station wagon on the highway. Thirteen years old when I had my first full blown panic attack. The timeline of my life was marked by these moments of mental unwellness.
I struggled with what I thought was the top-shelf genetic cocktail of my dad’s depression and my mom’s anxiety. By the age of ten, I was diagnosed with major depressive disorder, generalized anxiety disorder and attention deficit disorder, and heavily medicated for each.
And I hated it -- the constant change in prescriptions, the side effects, the judgmental stares from the kids as I stood in line with all the crazy kids outside of the nurse’s office to get our medicine, the tangible daily reminder in the form of a pill that I was not strong enough to handle life on my own.
After years of forced treatment, I felt helpless and worthless and so when I moved away from home for college I quit taking all of my prescriptions. I thought that I could experience life more fully without the blanket of medication weighing me down. I denounced any kind of treatment because everything I had tried before never worked. So at the age of twenty-seven, after several years of struggles, I decided that it was finally my time to go.
The voice of suicidal ideation became just a daily thing for me. It became so every day and normal that I referred to it as my worst best friend. After a decade without treatment it became all I knew. So I made a plan and I called my mom to say goodbye and I headed out to my final destination, a beautiful bluff that overlooked the Buffalo River in Arkansas.
But as I peered over the edge, something inside me urged me to call a Suicide Prevention Lifeline. That urge was my brain making its last attempt at survival. Volunteer Amanda told me that my life was valuable, that I didn’t need death. I just needed treatments. I didn’t want anyone to know what was going on where I was living at the time so she convinced me to come home to St. Louis to be near family. And she called me throughout the drive to talk me all the way home.
My parents took me straight to the emergency room of a hospital that was recommended by our insurance company only to find out when we got there that the psychiatric unit had been closed the year before due to lack of funding. So I was held in a small room with only a stretcher for two very blurry days. I was heavily sedated both as a proactive measure, because I still wanted to harm myself, and also so that I could stop crying long enough to sleep.
As soon as a bed opened up at another hospital they transferred me by ambulance in the middle of the night. When I got there, they took me to a small room to sign paperwork that I couldn’t even read through my heavy sedation and my constant tears. Unknowingly, I was signing away all of my freedom and every decision-making ability to a group of medically trained strangers. After that, they took me to my bed and I cried myself to sleep silently.
When I woke up in the morning, I was looking at a bed next to me, empty because my roommate had already left for breakfast. The windows were thick and darkly tinted with one-way visibility so that I could look out on a grayscale version of the world but no one could look in and see me.
I wandered down to the group room and I still couldn’t stop crying, only this time there was nobody around to judge me for it. As we stood in line for our morning meds, I felt like grade school all over again except there were no normal kids around to stare. As the medication settled in over the next few days, I still cried. I still cried and finally on the fourth day I stopped crying.
Sarah Pearl tells her story at the Ready Room in St. Louis in October 2017. Photo by David Kovaluk.
Once I was fully medicated, my family came to visit for the first time and I was so frustrated by how slow my thoughts and my speech felt. My sister gently told me that I was actually speaking at a rate they could finally keep up with. I don't know what my normal pace was. Apparently, light speed. But that voice, that suicidal ideation, my worst best friend was gone. Gone after years of daily abuse. What was more terrifying was I didn’t know if or when it would come back.
The next day over the phone my mom suggested that I should be evaluated for bipolar disorder. Her therapist actually recommended it. I was defensive. I was confused. I was scared. Like, bipolar disorder? I don't black out and go into rages. And my mood is not up one second and down the next. And I knew that if it was on my chart that there's no way I'd be able to get it off. If I had bipolar disorder, who would love me, date me, hire me, book me as a comedian? Surprisingly, plenty of people.
But we didn’t have any access to computers or devices and so I asked the staff for information. I dove in head first. I've always been a curious person and so when I’m faced with something that I’m afraid of or that I don't understand, I try to learn everything that I can about it. At this point, I didn’t even know that there were different types of bipolar disorder. Reading the criteria for diagnosis was like reading a really accurate horoscope. I exhibited every single symptom of Type 2 bipolar disorder.
So they prescribed me a leading medication to treat bipolar and, oddly enough, seizures and I started to feel like a better version of myself, one that I hadn’t seen in a decade. Depression had stolen everything from me including even my ability to read, but I'd still brought along my anthology copy of Hitchhiker’s Guide to the Galaxy. It was like a security blanket with the words “Don’t Panic” on the cover. Lots of Hitchhiker’s fans. Great!
And with medication, I was finally able to read again and I will never forget being shocked by the sound of myself laughing out loud again at the Guide. Even though it’s not science fact, I can say that science fiction made me cry tears of joy.
But all the paperwork that I signed even though I was feeling better, that paperwork meant that I had no say over when I was able to leave. So I blundered through the next couple of weeks with a lot of trial and error.
I found out the hard way that the uncomfortable corner that the phone was in was for acoustic purposes. When I was complaining about the world’s worst group therapy leader, it resulted in a lot of glares from the staff.
I learned that Milk of Magnesia is a magnesium supplement suspension best not taken after a broccoli dinner, unless you want to suffocate your roommate with stench. I even made a fake cigarette out of a bendy straw and a piece of rolled-up napkin and I thought I was the world’s most brilliant inventor, only to find out that everybody up on the geriatric floor did the same thing.
But we spent a lot of our time coloring and doing puzzles and watching movies without ever once in two weeks being allowed to go outside. The mindlessness of it made me feel like I was starting to make a backslide insanity, so I started thinking about reentering everyday life when I was out.
I'd only been doing standup comedy for about a year at this point, but it was the first thing I wanted to do as soon as I was released. Comedy has always been my primary lifelong coping skill. Whenever I’m sad or upset, I diffuse emotion with humor, and I found in that first year that I was happiest when I was onstage making people laugh. As I started to feel better, I started joking around with everyone, I started writing down new ideas for material, and I made plans for performing as soon as I got out.
One night when my roommate and I couldn’t sleep, I did a set for her and she laughed so loudly we got in trouble. So I really couldn’t wait to do it. Comedy gave me a goal and a purpose and a reason for making it through the hard times so that we could laugh about them later.
The time finally came for my release and as I walked through the doors that my family had come through to visit so many times I felt reborn. After two weeks of being stuck inside when the outdoors were really, really important to me, I expected to hear angels singing and see the clouds parting and to be overwhelmed by senses of the outside world. What I saw instead was a rundown parking lot in Granite City and the only sense that was overwhelmed was from the smell of the city works facility nearby.
But I spent my first few days with family and friends and the daunting task of dealing with insurance companies, hospitals, making appointments and getting prescriptions, and I stopped by the hospital again before I headed home to get a note for work. As I walked past the one-way mirror windows of the group room, I couldn’t see the women behind it but I knew that they were looking out at me. I wanted so badly to be able to signal to them in some way, to tell them to be strong, that they'll be okay, that if I can walk through this world with a newly-diagnosed mental illness, they can too.
Photo by David Kovaluk.
One of the rewards for recovery is being able to pass through doors at your own will, something that I’d completely taken for granted and never would again. Another reward for recovery was having access to information again, so I dove right into the science behind my disorder. I found out that it’s really difficult to diagnose bipolar disorder in children because it typically presents itself as depression and ADD. That likely my amygdala is atrophied from years of high cortisol levels and imbalanced serotonin. That the reason my medicine also is used to treat seizure patients is because the hippocampus is actually a source of both of our symptoms. That the list of people that I share my diagnosis with is really long and includes heroes of mine like Maria Bamford. That research is always ongoing, which means that even on days where I feel completely alone, somewhere there's a research fellow I will never meet who cares about me. And also that my disorder, Type 2 bipolar disorder has one of the highest rates of comorbidity with death, even higher than that of cancer and that I’m lucky to have made it out alive.
The first time that my worst best friend came back was when I opened my hospital bill. But instead of giving it any merit, I saw it as a way to identify my triggers. I still catch myself noticing “For Rent” and “Now Hiring” signs everywhere, but recovery means learning to trust myself again after years of unreliability. I have a list of coping skills and relapse signs on the side of my fridge that I don’t hide anymore when people come over, because recovery means being able to ask loved ones for help.
I have a Hitchhiker’s Guide tattoo now with a banner across the top that says “Not Again” as a reminder that I never want to go back to that way of living. I perform standup comedy on a consistent basis because recovery means doing what lifts me up on my lowest days.