All posts by erin

The View from the Stage: My Story Collider Experience

On stage at the Story Collider. Photo by Brian J. Abraham.

On stage at the Story Collider. Photo by Brian J. Abraham.

I have very limited experience being on stage. I’ve never been an “all eyes on me” type of person. I rarely, if ever, give talks or speeches for work, and, when it came to theater productions growing up, I was happier in the lighting booth and running around backstage. My on-stage experience amounts to one disastrous talent show where I was supposed to do a ballet routine, spun around once, burst into tears and stood on stage crying for the remaining three minutes of the song. Afterwards kind adults kept coming up to me telling me I was great, and, even at the age of six, I was the person that replied, “no I didn’t, weren’t you watching?!” My only other performance remains my third grade school play, which was called “Project Rescue: Save the Earth” and was about recycling. I played a raccoon. I had no lines.

Given this tremendous wealth of stage experience, I recently figured it would be a great idea to get up on stage in front of a theater full of strangers and tell them all about one of the most traumatic events in my life. Why not?

In the Fall of 2015, I volunteered to tell the story of how I diagnosed my own benign brain tumor at the Story Collider. I’ve been a huge fan of the Story Collider since I met the show’s co-founder Ben Lillie in 2013 and was introduced to the concept. The Story Collider is a live show where people get on stage and tell the audience a true story about science. With this as the founding concept,  the stories cover nearly everything. Each show consists of five storytellers who take the stage for about 10 minutes each. Sometimes the stories are funny, sometimes heartrendingly tragic, but they’re always in some way about how science impacted the teller’s life. The Story Collider also has a weekly podcast, where they publish one of the stories from the live shows.

As the dust was settling from the entire brain tumor episode (around the fall of 2014), I started thinking that eventually the saga would make a great Story Collider tale. I wasn’t particularly ready then to get on stage and open myself up in that way, but I knew that it was something that I wanted to do in the near future. I think there is a lot of power in taking control of your own story and telling it your own way. I also feel like my story can help people by sharing what I went through and maybe even helping someone avoid the same mistakes I made– that’s why I wrote about it after it happened and why I wanted to tell the story publicly.

It took until the summer of 2015 before I felt ready to take the stage, I had been feeling kind of stagnant in the science communication side of my life and thought that getting involved in Story Collider could be a good way to shake myself out of it. Ben connected me with the Boston show’s producers Ari Daniel and Christine Gentry, and together we decided that the story would be a good fit for the December show (there was a Fall show for the NASW conference that I was not brave enough to do.  Strangers are one thing; professional peers are another – hats off to the daring souls who took the stage during that show!)

As I started working out what I wanted to say, I realized that I would have to focus on just a subset of the brain tumor ordeal. There are a lot of different angles I could take, but I decided that the part I wanted to concentrate on was what came before– the two years from when I started to feel sick to when I was diagnosed. I chose this time period for a few reasons: while I was seeing doctors and talking to others about my health, I was really in it alone, so a lot of the story is about what I was thinking and feeling. I wanted to talk about the doctor who got it wrong and the one who got it right.  I wanted to talk about my regrets in those two years. Perhaps the most interesting thing about the entire episode is when I diagnosed myself correctly long before any medical providers did.

Brain tumors are rare, but my tumor was a vestibular schwannoma, which is really rare: 2,000 – 3,000 yearly U.S. cases. Among primary brain tumors (those that arise from the tissues in the brain) the majority are non-malignant (like mine) but with more than 100 distinct types of brain and central nervous system tumors it’s a very tiny pie, being carved up into 100 even smaller little sections. Hitting the bulls eye, and getting the diagnosis EXACTLY right, as a joke, my first time out of the gate is incredible. It’s not that I’m particularly smart or anything, I’m just an informed person who got lucky – but still – hell of a thing, right?

After the show with my amazing co-storytellers. Photo by Brian J. Abraham.

After the show with my amazing co-storytellers. Photo by Brian J. Abraham.

The topic that I was most nervous about covering was my doctors. I know there is a ton of snark out there about how doctors are well trained, and making a diagnosis isn’t as easy as just going to google, and too often patients come to their doctors with whacked out ideas about what they might have. I get that, and I respect medicine as a field, and I know that doctors go through a tremendous amount to get trained, certified, and practice. But doctors are still just people. Highly trained people, with incredibly specialized knowledge, but still, just people. People can make mistakes. People can be dismissive. People can be cruel, and cold. Doctors aren’t above any of this– no one is. But doctors hold their patients lives in their hands, and, when you’re counting on someone to have the expertise necessary to help you, and you trust that they do, being dismissed, when you’re right, is a terrible thing to experience.

I wanted to tell how the medical system failed me at points, but I didn’t want it to be mere doctor-bashing. Yes, I saw a doctor who missed what others with medical backgrounds have told me were textbook signs. But I also had an amazing doctor who understood the significance of my symptoms right away and advocated for me as her patient to get the best care. I also had an amazing surgical team that went above and beyond to take care of me. (I still feel that I owe my surgeon her vacation days back; yes, the hospital’s only specialist in my type of tumor left her vacation to come back and treat me.)  As with all things, there was good and bad. I wanted to make sure both the doctor who dismissed me, and the doctor who pushed me to get diagnosed properly appeared in my story. The choices made by these  two people and how they treated me as their patient drastically and permanently changed my life.

I’ll never know whether the surgeons could have used a different surgical approach that would have saved my hearing if only I had been diagnosed by that first doctor. By the time I knew what I was dealing with, the tumor was so large that, for my safety, a hearing-sparing option was out of the question. If only we had seen it sooner, would it have been small enough? I think it probably wouldn’t have, and I’d have lost my hearing either way, but I’ll never fully know. If my primary care doctor hadn’t been so adamant about getting me diagnosed immediately after she saw me, would I have become unable to move my face? That was a real possibility, and was the reason the surgeons opted to do the procedure right away. If these two doctors had made different decisions, how would my life be different now? I think about that a lot.

That’s the story about science that I wanted to tell at the Story Collider. It’s the story of how I struggled with myself to find the truth that I didn’t want to be real among all of these conflicting forces giving me different information. Dissecting what happened to me in this way is something that I had avoided doing for a long time, but writing my script felt like such a rewarding exercise. It was good to turn all of these things over in my mind, and I think forcing myself to tease out my feelings about the whole thing helped me to come to a more secure sense of resolution about what happened. Sharing the story with a live audience was just the icing on top.

The show was in December 2015, and I shared the stage with four other storytellers: Kaća Bradonjić, Kamau Hashim, Meg Rosenburg, and Abhishek Shah. It was an absolute pleasure to share this experience with them; their stories were all amazing. The theme of the show was “The Art of Losing,” which I thought fit all five stories together perfectly. It was a total rush to take the stage. I feel like my emotions and adrenaline were running so high I don’t really remember the experience. It was like time warping. I just stepped up to the microphone and started talking, and then it was over and people were clapping.

Here is the audio recording of my performance at the show:

Overall it was a great experience for me, and I hope that people enjoy listening to my story. If you aren’t familiar with the Story Collider, I encourage you to check it out. It remains one of my absolute favorite means of science communication. They have live shows in an expanding number of cities, and there is always the weekly podcast – so plenty of opportunities to hear true stories about science.

What I’m Reading: Two Years’ Worth

It’s been a long time since I’ve reviewed any books on this blog, but that doesn’t mean I stopped reading. I have devoured quite a bit of non-fiction in the past two years with occasional forays into fiction. I want to share with you a list of the things I’ve been reading lately. Even though I read them all in the last two years, some of these books have been out for a long time, while some are more recently published. I don’t really have a set way of figuring out what I’m going to read; it really comes down to whatever attracts my attention. If it’s listed here, I enjoyed it in some capacity, but I certainly have my favorites that stood out to me more than others.

A sample of books from the past two years.  Photo by Erin Podolak.

A sample of books from the past two years. Photo by Erin Podolak.

In non-fiction, I don’t think I could possibly say enough flattering things about Rust by Jonathan Waldman. I absolutely loved this book, but I was surprised by how much there is to say about a topic like rust. It’s an incredibly compelling story, and I learned a lot not only about the science of rust and it’s history but also about the problems rust poses in the United States today in terms of infrastructure. Having gone to college just steps away from the abandoned Bethlehem Steel mill, I also got a kick out of his adventures exploring the hulking ruins I’m so familiar with. I thoroughly enjoyed the book, and completely recommend it for anyone who likes non-fiction and just learning about a new topic. I was also very impressed by The Forest Unseen by David George Haskell. It chronicles an interesting exercise in which the author watches and records what happens in a single patch of land for an entire year. I thought it was unique and beautifully written.

I read a lot of science history books; it’s probably the genre I find myself pulled toward the most. In this realm, I absolutely loved The Girls of Atomic City by Denise Kiernan; it certainly tells a side of the development of the atomic bomb that you don’t often see. I also read three books by Sam Kean, and enjoyed them all.  He does an amazing job of putting scientific topics into current and historical context. I find his books consistently entertaining. They’re full of fun narrative bits that bring the topics to life.  I also have to specifically mention The Fantastic Laboratory of Dr. Weigl by Arthur Allen.  I was completely fascinated by this account of research using body lice during World War II, it was an aspect of the war that I’d never heard anything about. I was sharing fun facts about body lice with friends, family, and acquaintances for some time after I finished it. I think people probably got tired of hearing me say, “did you know….” and having the second half have to do with lice.

More books from my collection. Photo by Erin Podolak

More books from my collection. Photo by Erin Podolak

I haven’t listed below all of the fiction books I read, but one highlight was discovering Michael Crichton for books aside from Jurassic Park. I really enjoyed Sphere in particular. I also spent the better part of the two years listening to every Harry Potter audiobook. Somehow I managed to get to my mid-twenties never having read a single Harry Potter book– better late than never. It probably goes without saying that I loved them. I really enjoyed having them read to me by listening to the audiobooks; hearing everything pronounced in a British accent really puts the books over the top. I also read a collection of short stories by H.P. Lovecraft, and the Complete Sherlock Holmes by Sir Arthur Conan Doyle. I was also a big fan of The Circle by Dave Eggers, although I have to admit I found the ideas it presents for our future quite frightening (like, haul up in a shack in the woods frightening). Which is the point, I think it’s supposed to do that.  Or at least make us think more critically about how much we share online, why we share it, and which entities we allow to own our information.

I go back and forth between reading paper books and using a Nook. In general, I tend to buy my non-fiction books as books because I truly wouldn’t mind living in a library (which seems possible in a small apartment sometimes). I usually don’t buy paper books for fiction, but I’ve read some that were borrowed. For fiction I typically rely on my e-reader, especially for collections and murder mysteries, which I’d say are my main guilty pleasure.

So, if you’re interesting in checking out some of the books that I’ve enjoyed here’s my list:

The Billion-Dollar Molecule – Barry Werth
Bossypants – Tina Fey
The Case of the Dueling Neuroscientists – Sam Kean
The Disappearing Spoon – Sam Kean
Driving Mr. Albert – Michael Paterniti
Empires of Light – Jill Jonnes
The Fantastic Laboratory of Dr. Weigl – Arthur Allen
The Forest Unseen – David George Haskell
The Ghost Map – Steven Johnson
The Girls of Atomic City – Denise Kiernan
The Half Life of Facts – Samuel Arbesman
The Hunt for Vulcan – Thomas Levenson
I Was Told There’d Be Cake – Sloane Crosley
Infinitesimal – Amir Alexander
Into the Wild – Jon Krakauer
Longitude – Dava Sorbel
The Map Thief – Michael Blanding
Merchants of Doubt – Naomi Oreskes & Erik M. Conway
On the Move – Oliver Sacks
Scatter, Adapt, and Remember – Annalee Newitz
The Science of Harry Potter – Roger Highfield
The Secret History of Wonder Woman – Jill Lepore
The Skeleton Crew – Deborah Halber
Soul Made Flesh – Carl Zimmer
Thunderstruck – Erik Larson
Rust – Jonathan Waldman
The Violinist’s Thumb – Sam Kean
The Water Book – Alok Jha
Wild Ones – Jon Mooallem
Yes Please – Amy Poehler
10% Happier – Dan Harris

I also just want to mention that I wasn’t asked by any of the authors or publishers of the books listed above to review them or say nice things. No compensation, I just liked them and you might too.

Lost and Found in the Healthcare System

When you’re a patient in a hospital, you don’t need shoes. You’re not on your feet much, and they’ve got you covered with socks that have little white nubs on the bottom to keep you from slipping. This is why I didn’t notice that my shoes were missing until several days (I didn’t keep track of time very well ) into my hospital stay.

I was in a hospital for surgery to remove an acoustic neuroma (also called a vestibular schwannoma) that was growing on the eighth cerebral nerve running from my brain to my right ear. I’d checked into the hospital unexpectedly. I’d woken up that morning with increased symptoms and had gone to see my doctor straight from work. She recommended surgery the next morning, and wanted me to check into the hospital immediately. She told me to just walk to the emergency department, which was right across the street from her office – in fact for several blocks the area is nothing but hospitals and medical buildings. I walked in wearing my work clothes and a pair of black leather riding boots, and explained who I was and why I was there.

The first few hours after I was admitted were chaotic. There had been a terrible fire in Boston that day. Two firefighters lost their lives, and the emergency department at the hospital where I was treated received several patients from the scene. Since my surgery was unscheduled and my arrival unexpected, no one had clear instructions about where I was supposed to go.

As a patient, you have to belong to someone. A doctor has to say, “I’m responsible for this person”. This is the doctor who signs the forms, and at the end of the day is ultimately in charge of your care. My problem wasn’t that no one claimed me, it was that too many doctors claimed me. I had a doctor from the emergency department, a doctor for my ear, a doctor for my brain, and my primary care doctor attached to my case. There were conflicting stories about where I should be, so I was shuffled around a lot. The problem was that I didn’t fit neatly into one of the categories that medical specialties are divided into. I wasn’t just an unexpected arrival, I also wasn’t an easy to assign case. This meant that the hospital staff who were giving me instructions were themselves receiving conflicting instructions.

My trusty boots, found after their hospital adventure.

My trusty boots, found after their hospital adventure.

In the emergency department I was told I needed to be admitted in a building across the street. I offered to walk (according to Google Maps it’s just five minutes on foot), but was told that wasn’t allowed and had to be transported by ambulance. It probably goes without saying that I felt ridiculous. Once there I was told I actually needed to be in a different building on the side of the street I started on. Again, I wasn’t allowed to walk there, so that meant another ambulance ride. Once I arrived in the right building, I was assigned a room but was taken down for several hours to the imaging department. Finally, I arrived back to the room where I’d spend the night before the surgery. Somewhere along the route, I removed my boots in exchange for the slipper socks. By the time I settled into one place for the night, with 12 hours of neuro-surgery looming ahead of me, getting a hug from my Mom was far more important than the boots. I’d forgotten all about them.

After the surgery, I wasn’t in any sort of condition where I could think about shoes. I spent an entire day in surgery, and another lost in the fog of trying to wake up post-anesthesia. The type of tumor I had affected my balance, so walking was a struggle. A slow, plodding lap of the hallway outside my room, propped up by friends and family was all I could manage. After a few days, I started to pull myself together and remembered the belongings I’d had with me when I arrived at the hospital. My work clothes, my backpack, my grey wool pea coat, my boots. My family assured me they had everything, but when they went to show me, the clothes, bag and coat were there – but no boots. Somewhere in the shuffle, my boots had gotten lost.

For inanimate objects, I relate a little too much to my boots. I was never lost per se, but as a patient if your condition straddles medical specialties you can feel passed around. People are certain you belong to someone, somewhere, they just aren’t exactly sure where that is.

Every time I talk about how I had a brain tumor, I feel guilty. Guilty because that’s not quite accurate, and the science communicator in me can’t help but cringe. An acoustic neuroma grows from the nerve sheath cells that coat the eighth cerebral nerve, which controls your hearing. My tumor was in my inner ear – affecting both my hearing and my sense of balance. To classify my tumor as a brain tumor seemed off to me, after all it wasn’t growing from the cells that make up the brain itself. Yet, it was right next to my brain. Sticking to my brain, in fact. Sticking to my brain in such a way that hours of surgery were needed to get my grey matter to finally relinquish it. It was certainly brain surgery, but it wasn’t just a brain tumor. It was in my inner ear growing on the nerve. This is why I didn’t just have one surgeon, I had two (well, many people were in the operating room). One of my surgeons was a specialist in skull base neuro-surgery for the brain and one was an ear, nose, and throat surgeon for the inner ear. I was very lucky to have both of these doctors on my team.

As much as it was my medical team, I certainly wasn’t the one steering the ship that day. Since I was in an anesthesia induced stupor I wasn’t the team captain – so then who was? Two surgeons of equal standing, each with a different medical specialty, each with their own purpose for being there. Who was in charge? Luckily, my doctors have worked as partners for a while and there were no power struggles over my care, but it did come into question while I was recovering. Whose patient was I? Where did I belong?

The hospital floors were broken up by medical specialty. Did I belong on the neuro floor with the stroke patients? Or did I belong on the ear, nose, and throat floor with the patients having surgery for a cochlear implant? Where was I supposed to be? In the end, the hospital split the difference. My ear, nose, and throat surgeon became the primary on my case, but I spent my time recovering on the neuro floor. They sorted it out, and carved out a niche for me to belong, but the lines weren’t clear. I didn’t fit into the boxes our current system for dividing medical specialties silo patients into.

My boots didn’t fit either. We found out that the reason my boots were lost was because they didn’t fit in the bag they’d given me for my personal belongings. We had everything that had made it into the bag, but the boots had been unintentionally abandoned. When you don’t fit in the box, or the bag, assigned to you, your choices can be limited. You run the risk of slipping through the cracks. You can try to squeeze and jam your way into the appropriate container, but it won’t meet all of your needs. You can try to break out of the box, but you might get left behind. The human body works as a unit. Conditions like mine have effects on multiple systems, and don’t fit easily into a category. Special attention is required to make sure that patients who don’t meet the definitions make it to the right destination, and receive the right care.

Ultimately, the hospital lost and found tracked down my boots and delivered them back to me. They figured out to whom, and where they belonged. With me too, the staff sorted out to whom, and where I belonged. I received excellent care, and all of the support I needed for the effects the tumor had on my ear and hearing and the effects it had on my brain and balance. The whole experience left me wondering though, if we can’t do better than the lost and found? I’m not about to suggest ways to overhaul our healthcare system, because I don’t have any, but if I’d had more than one bag for my belongings (or maybe no bags at all) I might not have lost the boots in the first place.

What I’m Reading: Toms River

It’s been a long time since I’ve shared thoughts about anything that I’ve read. Not that I’ve stopped reading of course, in the past year I’ve made my way through many non-fiction science books that I’ve enjoyed but haven’t written about. I was on a blogging hiatus, but now that I have free time courtesy of the things detailed in this post, I want to rebrand my book review series. I’m not sure book review is accurate to describe the type of posts I write.  While I share my opinions, I almost never write about books I didn’t enjoy and try to avoid negative comments. I do this because if I’m going to write a post I want it to be about something I’m excited about and enjoyed rather than something I disliked. Thus, I feel calling these posts What I’m Reading is better than Book Reviews. As always, if I’ve been asked to read a book by the author or publisher I’ll let you know, though nearly all the books I write about are chosen because they peaked my interest. Even with a new name, I hope people will still be encouraged to check out the books featured in this series.

When I’m reading non-fiction I gauge the success of the story by how quickly I finish reading it. Are the things on my to-do list falling by the wayside because I need to know what happens next? Am I so engaged that nearly 500 pages can be consumed within a few days, or are the pages trickling by as they lull me to sleep each night? Is the book so compelling that even the most technical details are devoured alongside the more narrative elements of the story? To cross the line from “I liked it” to “I loved it” a book needs to meet these criteria. I loved Toms River by Dan Fagin.

toms-river-250x300In addition to being the name of Fagin’s Pulitzer Prize winning book, Toms River is the name of a town in New Jersey. I grew up in New Jersey in the 1990s and 2000s – just young enough to know that Toms River had a stigma attached to it, but not old enough to read the papers or understand why. When I found out Fagin was writing a book about the New Jersey town and it’s epic pollution problem, I was intrigued and quite frankly a little shocked by how little I knew about the environmental disaster that had taken place in my own home state.

As far as states go, New Jersey doesn’t exactly have a glimmering reputation. Since it’s not enough to have to contend with pop culture stereotypes like Jersey Shore or the Sopranos, we also have our fair share of government corruption and industrial pollution. Yet I feel protective of the “Garden State” (when you think of the pollution problems, the jokes just write themselves don’t they?) Where I grew up, on the boarder of Union and Morris counties, was the very picture of the idyllic New York City suburb. It was hard to imagine the state had a pollution problem when surrounded by the manicured perfection of sprawling lawns, parks, and golf courses. Yet, even as a kid, while I don’t remember any specific media coverage I remember the negativity, the impression that Toms River had problems. Until I picked up Fagin’s book, that was really all I knew about it.

While the details of the environmental disaster that played out in Toms River over the course of 50 years may have eluded me growing up I was aware of New Jersey’s distinction as the state with most Superfund sites. On their website the Environmental Protection Agency describes Superfund sites as:

“An uncontrolled or abandoned place where hazardous waste is located, possibly affecting local ecosystems or people.”

The government started designating Superfund sites after the Love Canal case in which toxic chemicals located beneath homes and an elementary school in Nigara Falls, NY started causing health problems in 1978. Toms River made it onto the list in 1983 thanks to the Ciba-Geigy factory, a 1,400 acre site where the chemical company manufactured primarily dyes, but also resins and epoxy. The company dumped waste products from the manufacturing process contaminated with toxic chemicals on the factory property, into the nearby river, and into the Atlantic Ocean from the time the factory was established in the 1950s. Toms River is a beach community, and the toxic waste easily seeped through the porous sandy soil to contaminate the ground water in the area. The groundwater cleanup started in 1996, when I was eight which is why I missed out on the majority of the drama.

Fagin’s book starts out by getting into the history of dye manufacturing. It doesn’t really sound like a topic that would be captivating, but I was fascinated by the backstory behind major chemical companies and how dye became a big business. Tracing the various companies through their founding, expansions, closures, consolidations, and mergers with clarity is a difficult task, and Toms River does it skillfully. I was hooked from the very beginning and as the story developed from the discovery of the chemical compounds used in dye manufacturing through the events that led Ciba-Geigy to open their plant in Toms River I found myself more and more impressed at how sucked into the story I became.

There is a turning point in the middle of the book where the story starts to shift from explaining how the pollution got into the water in Toms River, to explaining the affects of that pollution on the town’s residents namely the rise of a pediatric cancer cluster. I may be slightly biased in how interesting I find cancer epidemiology since I do write about cancer research for a living but I feel like Toms River handles an incredibly complex science with a perfect amount of nuance and explanation. The book even gets into the nitty gritty of experimental design without making me want to skip ahead to just find out the results. The intricacies of the studies needed to prove an environmentally caused cancer cluster became the drama for a big section of the book.

Woven throughout the book are the stories of the people involved from the first dye discovery through the operation of the factory all the way to the legal battle that sprung up once the cancer cluster was discovered. Generally I’d call the human element the narrative aspect of the story, the thing that drives the story forward, but that doesn’t really feel appropriate in this case. The entire thing is a compelling narrative. Still, Fagin does a wonderful job of injecting the story with the personal experiences of the people who lived it. The book culminates with settlement of the legal case regarding the Toms River pollution, and the scientific findings from the studies undertaken to prove that the cancer cluster had an environmental cause. These parts of the story are explained through the impact they had on the families of children with cancer and thus resonate deeply.

I really loved Toms River from start to finish, and recommend it for anyone regardless of your background knowledge or interest in science or environmental issues. It is just a fascinating story, told extremely well.

Part Three: Aftermath

Where am I? Where am I? Where am I? Where am I? Where am I? Where am I?

Calm down brain, you’re laying down. Do you remember down?

Where am I? Where am I? Where am I? Where am I? Where am I? Where am I?

Brain, we’ve talked about this.

Where am I? Where am I? Where am I? Where am I? Where am I? Where am I?

Brain, you’re going to have to figure this out. I know. It’s different.

Where am I? Where am I? Where am I? Where am I? Where am I? Where am I?

Down is still down, it’s always been down.

Where am I? Where am I? Where am I? Where am I? Where am I? Where am I?

Suit yourself, I can’t make you.

Lying in a hospital bed with the lights off, my brain is screaming into a void. It doesn’t like the answer, or lack thereof, it is getting in return but it just keeps screaming. This is incessant vertigo. That is how it felt after surgeons cut into my brain to remove an acoustic neuroma. My brain was in a panic, trying to find its place in the world, but the input it typically relies on was damaged first by the tumor and then the surgery. There is no information streaming in from one of the usual sources, and my brain is having trouble coping with its loss.

Symptoms and lingering effects

Rehab to regain my balance, trying to stand on one foot and tap the other in front of me standing on a piece of foam. Photo by John Podolak.

Rehab to regain my balance, trying to stand on one foot and tap the other in front of me while standing on a piece of foam (treadmill isn’t on). Photo by John Podolak.

Of the 12 cranial nerves, the eighth controls and senses both sound and spatial orientation. An acoustic neuroma is a tumor that grows on this acoustic/vestibular nerve. Mine grew on the right, and so my hearing and vestibular system have both been damaged beyond repair on that side. The vestibular system is a part of your inner ear, and it works in concert with your eyes to sense your spatial orientation, giving you balance. It’s made up of two canals, and small crystals that move when you move and settle in response to gravity’s pull. Since vestibular function is closely linked to your vision, problems with this system are diagnosed by studying eye movements. Together your eyes and your vestibular system signal to your brain to figure out where you are in space.

Vertigo, which I’ve explained as living in a world that won’t stop spinning, is a common symptom of vestibular dysfunction. However, not all vestibular problems result in vertigo, and you can experience dizziness and balance problems that aren’t vertigo. I’ve struggled to find what I feel is an accurate way to describe what vertigo is like, and to differentiate it from other types of dizziness.

Prior to my surgery, I had a positive Dix-Hallpike test, which is used to diagnose vertigo. For this test you put on goggles that block out light and lean back with your head unsupported and turned all the way to the right or to the left. If you have vertigo, it will be triggered by this maneuver because, without input from your eyes, your brain struggles to orient itself.

Immediately following the surgery my vertigo was more intense that I’ve ever felt it, to the point that I was constantly nauseated.  That is when I started describing it as a world that never stops spinning, or constantly riding Space Mountain. I had been told to expect this, so, unpleasant as it was, at least it wasn’t a surprise. The spinning lessened everyday after the tumor was removed, and, around the four-week mark post-surgery, the vertigo mercifully stopped. I recently had another Dix-Hallpike test and didn’t register a response, which is great.

I still have difficulty balancing, which is evident when I’m walking or going up and down stairs. If I try to walk with my eyes closed, it’s game over. Still, this is an improvement from the way things were in the hospital, when I couldn’t walk without assistance. I may wobble around like I’m hammered, but I can do it on my own. Vestibular rehab, which is a type of physical therapy, should help retrain my brain to balance. In some ways it feels like my brain is having an existential crisis, and, while I would like it to decide what it wants to do with itself, I know it takes time to adapt.

From physical to mental

Since the surgery was pushed earlier, it was only after the procedure that I started to process anything. Recovering from this procedure left me a lot of time to think, because I found it hard to focus on anything around me. Eyes closed, quiet, but awake, is a state I spent a lot of time in. Doing a lot of thinking, but not necessarily coming to terms with my feelings. People keep asking me if I’ve cried, or if I’ve gotten angry, but I’m not sure I’m sad or angry. I’ve had moments of course, and I get frustrated with myself when I struggle to do simple tasks, but I’m largely in good spirits. I feel lucky and loved more than anything else.

No, not learning to read I'm practicing eye tracking to help with balance. Photo by Joe Caccavo.

No, not learning to read I’m practicing eye tracking to help with balance. Photo by Joe Caccavo.

My worst moments come when I start getting down on myself for getting down. I’m impatient. I want to be back to normal. I want my life back. I want to be able to do things for myself. I want to walk without having to reach out and steady myself. I want to go back to work. I want my body back, because, in a lot of ways I feel like my body has been hijacked. Then I get annoyed with myself, because I’m going to get all of these things. I’m going to make a complete recovery, and it is only a matter of patience until I get there. I know I’m allowed to feel frustrated, but I try hard to maintain a realistic perspective about what has happened, and all the things that will happen because I’m still here.

That leaves things progressing incrementally. I’m anticipating being back on my feet sometime in June, and am looking forward to returning to the science communication world. I’m still doing a lot of thinking, and have a lot of emotional processing left to do, but I get a little bit closer to coming to terms with it everyday. As I’ve been reflecting, there are a few things that I’ve taken away from the whole experience which are not particularly earth-shattering, but are certainly foremost in my mind.

Things to take away

In the hospital with my sorority sisters, one of us isn't looking their best. Photo by John Podolak.

Before I left the hospital, with my sorority sisters. One of us isn’t looking their best. Photo by John Podolak.

First, as much as this happened to me, it happened to everyone who loves and cares about me. I’m so grateful to my friends and family for dropping everything to be at my side through all of this, and I think it is important to remember that this was traumatic for them. My parents keep talking about what I went through with the surgery, but I can’t imagine what they went through, watching the clock, waiting for news as an entire day slipped away, far longer than anyone predicted. I didn’t come out of the operating room until well after 10pm, and I know friends scattered across different cities were up watching their phones, waiting to hear how it went. I missed the majority of the drama either unconscious or blissfully unaware thanks to painkillers, so I think they had it worse. I’ve experienced such an outpouring of love and support, and have been so well taken care of – but caretakers need care too.

Second, never underestimate the power of an excellent nurse. I had two absolutely fantastic surgeons, and my primary care physician is awesome, but I also had terrific nurses. The nurses were always there, answering the majority of my questions (or helping me get the answers) for everything from tracking down my missing shoes to explaining what kind of medications I was taking and why. I know my Mom made a lot of late night phone calls to the hospital to check on me, and the nurses always fielded her inquiries in a calm and positive way. My nurses were all pretty awesome, and it made an unpleasant hospital stay that much more bearable.

Third, young and completely healthy isn’t protection against a medical emergency. You may be fine now, but life could have a curve ball headed your way, and you need insurance. I can’t even begin to imagine this experience without health insurance. I haven’t received the bill yet, but the costs associated with my care are going to be astronomical. Knowing I’m lucky enough to have primary and secondary insurance to help cover those costs has been such a relief.

Fourth, I have a new appreciation for what it is like to not be able to do something. I know I’ve said before that I can’t do something when really either I won’t, or just don’t want to do it. Having now experienced what it is like when you really can’t do simple things, I don’t think I’ll be mischaracterizing my abilities again. I also have a new appreciation for what a luxury it is to be able to sweat the small stuff. If your life is such that you can get worked up about things like traffic or a last minute meeting, you’re doing pretty darn well. There is so much that now seems like a waste of time or energy. It’s a trite truth that you don’t know what you have until you almost lose it, but I certainly have a renewed appreciation for all the good there is in my life.

The last thing I’ve been cogitating on (for now) is how important it is to trust yourself. I knew that something was wrong with me, long before I was actually diagnosed. I dismissed my symptoms for a long time, suffering through them rather than facing the reality that something serious could be wrong. Naturally, I’ve been blaming myself that things became as dire as they did, but I’m coming around to the idea that beating myself up about it isn’t exactly productive. This started out as dizziness and headaches, which could have been so many things besides an acoustic neuroma. It’s not surprising I and everyone I talked to about it brushed aside the idea of a tumor. It’s important to be your own advocate, and find a doctor that will listen to you. The first hearing test I took said I was fine, even though I knew I wasn’t. I’m so grateful to my primary care physician for listening to all of my symptoms and pursuing my case with a CT. She might not have been the one making the cuts, but I don’t think it’s a stretch to say she saved my ability to move my face by making sure I was diagnosed properly.

What I’m taking away most is that you can’t hide from your health, and if you try, it’s likely to come crashing through your life like a hammer. I’m just glad I’ve got a chance to pick up the pieces.