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.  

This story originally aired February 16th 2018 in an episode titled Black Holes.

Story Transcript

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. 

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.