The more I learn about and bear witness to the world, the more I’ve realized that my classroom education left out some aspects of history that give context to world and national events, and shape how I understand and interpret them. Reading is one of the best ways I’ve found to introduce missing perspectives and fill in gaps in my education.
Growing up I certainly had an awareness about the civil rights era–we learned about Rosa Parks, Martin Luther King Jr., and Malcolm X in school. But, even though I learned about these important people, there are so many others whose names I should also know, that I don’t. Pauli Murray and Katherine Johnson are just two of those names. Luckily, reading brought their stories into my world, and helped add depth to my knowledge about the various contributions of people of color to the United States during the civil rights era.
I learned about these two women by reading books that I think offered a lot of good information about US history and the role that women of color played in it: The Firebrand and the First Lady by Patricia Bell-Scott and Hidden Figures by Margot Lee Shetterly. Science writing and science history tend to comprise more of my reading list so Hidden Figures was in my conventional wheelhouse more so than the Firebrand and the First Lady, but both books were still quite different choices for me, being written by and about women of color. While I’m embarrassed by how little of my bookshelf came from or is about women and people of color, it is something that I can and am consciously fixing.
The Firebrand and the First Lady tells the story of the friendship between Pauli Murray and Eleanor Roosevelt. Murray was a lawyer, a civil rights and women’s rights activist, and the first black women to be ordained as an episcopal priest. Eleanor Roosevelt was the first lady of the United States from 1933-1945, US representative to the United Nations 1946-1953, and an important political figures in the women’s rights and civil rights movements. With neither woman alive to speak for themselves, the author draws heavily on the letters they wrote to each other.
Being able to see the letters they wrote to each other, especially when they disagreed, was amazing. It really was a snapshot from another time, where people with opposing views could find common ground and unite around a shared respect, treating each other with civility and thoughtfulness. It just struck me as sweet and sad that there was once a time when a young woman could reach out to a political figure and not just get a reply, but get true buy-in and a relationship that lasted the rest of their lives. I don’t think we currently live in such times, although this lovely piece by Jeanne Marie Laskas about how President Obama handled his mail, reading 10 letters a day from the public was a nice reminder about how important it is to have elected officials who hear you.
In telling the story of Murray and Roosevelt’s extraordinary friendship, the author gave an overview of the civil rights movement and the role that women played in it. But it was also an extremely American story, about how regular people built themselves up through education and hard work to leave an imprint on the world through the changes in policy and law that they helped bring about. The book left me not only knowing Murray’s name, but also with a profound respect for her.
I felt sympathy for Roosevelt, being a power broker but with limitations, and needing to figure out what she could do, what she should do, and how to pick which battles were the ones worth seeing through. She wasn’t able to do all that she wanted to, and yet she did so much more than most. But I was glad to see that Murray always held Roosevelt’s feet to the fire. In some ways, seeing Roosevelt’s responses felt like a master class in how to deal with criticism, and how there is always more that we can all do to help improve life for those around us. Being pushed to be better is a gift in many ways, but it’s also an endorsement of your own worth– that you’re worth improving.
Hidden Figures is quite a bit more well known, now that it has been made into a box office-topping film. Despite there being a movie version, the book is certainly worth your time. It tells the story of the black women “computers” (in the literal sense of “people who do computations,” but really mathematicians and engineers) who worked at NASA during its formation and at the dawn of the space race. It’s been written and said by others that the fact that this story hasn’t been told before is amazing. I certainly am not the first person to notice that this is a trend, the contributions of women of color being erased from the history that gets handed down. I’m glad that this book is as popular as it is because it is bringing this bit of history to the forefront and giving the amazing women whose story the book tells the place in history that they deserve.
One of the important things about Hidden Figures that has been said in this article and elsewhere is that, while it might be about events that took place from the 1940-1960s, there are still trends and themes from then that echo through research institutions today. Certainly for women of color working in physics today there are still numerous barriers to success and discrimination that white women and women in other fields don’t encounter.
Ultimately, I recommend both of these books, they are beautifully written and offer a point of view that I found incredibly valuable for expanding my understanding of the role that women of color played in US history. That context is important for understanding the tumultuous political climate of the world today, and I’m grateful to the authors for telling the stories of these women.
Disclaimer: Speaking for myself as an individual in this post, not on behalf of my employer.
There is a lot to be gained from stepping out from behind your desk once in awhile. I work in the Dana-Farber Cancer Institute’s Division of Development and the Jimmy Fund. Our offices are down the road from the main Institute campus, which is a comprehensive cancer center. I’m fortunate that my responsibilities bring me to the main campus often, but many of my colleagues do not get such opportunities. To help keep our entire division connected to the Institute, every year we have a shadow day where the people who work to raise money to support the Institute get to shadow someone who works in a different role at the Institute for a morning.
The shadow assignments can be anything– in the past, I’ve shadowed researchers and the leader of Dana-Farber’s gift shop. Other people have followed members of the community benefits program, patient resources, maintenance, etc. This year I had the opportunity to shadow a clinician as they saw patients.
It is such an intimate experience to sit in on someone’s appointment with their physician. To squeeze into the room with the patient and their family and listen as they detail their concerns and thoughts, looking for guidance and help. I was grateful (and somewhat shocked really) that so many patients welcomed my partner-for-the-day and me into their appointments. I’m not sure that, in their shoes, I could have been so gracious.
The patients’ graciousness was noteworthy, in part because these were cancer patients: people touched by one of humanity’s most daunting adversaries. Their uncertainty resonated and found uncertainty in me. Sure, I do know a bit about being a patient, but not a cancer patient. I know about cancer research, but from an outsider perspective–not that of physician or patient. This peering into a patient appointment was something new. I knew enough science and medicine to keep up with the conversation, and enough to be able to empathize with the patients, but truly it was an eye-opening experience.
In a morning of novel things, a few stood out to me. One was how quickly the physician was expected to switch from topic to topic. In the in-between moments when we weren’t in the examination rooms with the patients, the doctors darted around the hallways, conferring with the nurses here, with the radiologist reading the patient’s scans there, updating patient records, consulting notes,writing notes, or placing calls to other physicians. There really never was a “down” moment in the four hours that we were there.
For one of the patients that day, the nurse and the physician had different plans for how they intended to handle the patient’s unique situation (another disease on top of their cancer), and they had to devise a single game plan. Knowing Dana-Farber it was perhaps not surprising to see that all voices from the care team got heard, but it was still refreshing to witness.
Something else that struck me about the experience is actually a lesson I learned myself during my own health scare: while physicians are the experts, you need to keep track of your care plan and participate actively. Often patients or their families know more details and the context of the situation than the physician may remember off-hand, especially when the physician sees a lot of patients with similar diagnoses. The task-hopping required of these clinicians makes it impossible to remember all of the things you’ve discussed in prior appointments exactly without prompting sometimes. It’s not imprudent to jog their memory or ask them if they’re sure about something. You can and should question your doctors; if something doesn’t seem right to you, just be reasonable. Listen to their expertise, trust their evidence, but still make sure you’re bringing up your concerns.
It was also particularly interesting how quickly the physician had to change their approach as they went from patient to patient. The patients we saw that morning ran the gamut, and each was in a different stage of their cancer experience. There was optimism of a promising diagnosis alongside terminal cases where nothing else could be done. There were chronic patients and patients for whom the cancer was not their primary health concern. It was fascinating to watch the physician read the room and get a sense of how the patient and their family members were feeling and try to meet them where they were. As with all things, I think there were hits and misses, but, for the most part the personalization of each appointment was a really positive thing.
For me, because I write about forthcoming solutions in the form of therapies, it really felt like I was getting a sense of the meaning of the work. This is what it’s all about: trying to help the people that come for care. I write often about the type of cancer that the patients we saw actually have, so I’m very familiar with the drugs. It was striking to see patients feeling good on some of the newer medications, even in cases where they weren’t going to be cured and they knew it. Having a good quality of life in the time they have is really significant. You do the best you can with each unique situation, but to at least be able to offer patients the chance to feel better even if you’re not getting them that much more time still felt like a win of sorts. Maybe not the ultimate win, but not a dismal failure either.
I’m extremely grateful to have had the chance to see just a snippet of the work that Dana-Farber researchers and clinicians do. In development, it can sometimes feel like we’re not actually involved in what Dana-Farber does, because we’re just raising the money. The shadow day experience helped me to feel more connected to the fact that everything we do is about helping patients. It was a good reminder of why I chose to work in a non-profit and what drew me to this kind of science writing in the first place. I wanted to be an advocate and an ambassador for science, for a cause, and I can’t think of a better one than this.
In January 2014, I fell crossing the street. In my defense, it was a damp day that felt like it could either rain or snow, and the streets were already slick with moisture. I was hurrying to cross while I still had the light, and, right as I was in the middle of the road, my right foot shot out from under me. I had slipped on the white paint of the crosswalk, essentially doing an unintended split. My left leg was behind me, and I landed on it, putting all of my weight on my left knee and winding up in a sitting position. The fall hurt, in the way that most falls do. I was scraped and bruised (but mostly embarrassed). But I got myself up, and continued on my way to work, thinking little of it in the days and weeks afterwards.
This fall was one of the signs I missed. Looking backward, it has become clear why I fell. To be fair, at the time, I didn’t know that I was walking around with a benign brain tumor altering my system of balance. The bruises on my knee were low priority compared to diagnosing and addressing my other symptoms, hearing loss and vertigo. Everything in my life became centered on the symptoms of the tumor – symptoms that wouldn’t be diagnosed until two months later.
As badly as the tumor damaged my ability to balance, the surgery to remove it made it worse, albeit temporarily. I needed physical therapy (vestibular rehab) to retrain my brain to balance, which helped me get back on my feet. While I was working on my balance, I noticed a nagging pain in my left knee. I shrugged it off as mere stiffness from having been inactive for so long while recovering. But it didn’t go away and hurt more as I became more active. In the following months, I would start to think that this knee injury was like my brain tumor’s last “screw you”– the final parting shot.
Fed up with being sick, I got good at ignoring the discomfort. I wanted so badly to feel like myself again and get back to my normal. The last thing I wanted was something else wrong with me that needed medical attention. So, even though I knew the pain in my knee wasn’t normal, I gritted my teeth and just dealt. It was nearly a year later before I realized my knee pain had gotten much worse. While I can be ostrich-like with my head in the sand when it comes to my health, the knee pain of spring 2015 was something I could no longer ignore.
I started with my primary care provider, who recommended an orthopedic specialist. I had pain in several different parts of my left knee: in the front near the patella (knee cap), along the inside of the joint, and towards the back. This variety of pain sources made it a little more difficult to pinpoint the problem, but I agreed to start with some physical therapy to see if that could help. The PT did help some of the pain, especially along the inside of the knee, which was diagnosed as pes anserine bursitis. Basically, the fluid-filled pad cushioning the bones of my knee was inflamed and tender. Even after the PT, there was still lingering pain in the knee, and it just didn’t feel right, so I asked the orthopedist for an MRI.
The MRI showed a lateral tear in my meniscus. The meniscus is the rubbery cartilage disc that cushions the tibia (shin) from rubbing against the femur (thigh). Typically, meniscus tears are caused by forceful twisting of the knee– exactly what I did when crossing that street. Next to my tear was a bonus cyst, which was adding to the pain. The orthopedist and I concluded that, if physical therapy hadn’t helped enough, the only remaining option was surgery.
After what I’d been through with the brain tumor, I was hesitant to have another surgery. It was hard to be so dependent on other people after a procedure, and waking up from anesthesia was a horrible experience. Rationally, I knew the knee surgery wouldn’t be the same as the brain tumor surgery, but I still couldn’t get motivated to actually schedule it. Pain won out though, and I had to accept that I needed the surgery if things were going to get better. At 27, it didn’t make a lot of sense to resign myself to living with constant pain. I struggled going up and down stairs, couldn’t walk far distances, and running was completely out of the question.
I decided that the beginning of March made the most sense for when to have the surgery. It’s when Boston usually starts to thaw, so I would not likely have to contend with much snow. I also timed it between travel and social requirements, so I would have time to recover. My parents were able to take time off of work to come up to Boston to stay with me, which was particularly helpful; I’m pretty sure I would have started clawing at the walls if left alone during recovery. Of course the timing wasn’t great for work – but it’s never completely convenient to take two weeks off from your daily activities. There was a lot of emotion built into getting my knee fixed because of what I’d been through when I injured it, but I knew it was the right choice (and it was really the only option for feeling better).
The surgery itself was on March 1st, and went as smoothly as possible. I could have had it at a hospital in Boston, but it made more sense to go outside the city: it left the hospital for emergency cases, which is what they’re designed for, and moved my outpatient procedure to a facility that it was designed for. I suspected that the outpatient facility would be calmer and make for a more focused experience, which it was. I also didn’t want to be in the very same PACU that I’d had my brain tumor surgery experience in; I felt like that place would bring up memories and emotions that I didn’t want to relive.
It was all over in a couple of hours. I didn’t have nearly as much trouble waking up in the PACU this time, although I did get some momentary vertigo as I was coming to, which was scary given that I was still pretty out of it. Mercifully, it passed quickly and things went back to normal. Within a couple hours, I was dressed and able to get in the car to go home. Once home, it was couch and Netflix. I was only on the crutches they gave me for two days, and, after that, I started walking around on my own.
I’m going to need physical therapy, but I can already tell that the pain from the torn meniscus is gone. Not that there’s no pain–recovery can be tough and there is still a little of the bursitis that I had before–but I can tell the nagging, limiting pain is gone. After compensating for one weak knee with the other strong leg, I now have to regain strength and steadiness and equivalence between both. Having spent most of my life with no health issues, and now having undergone two surgeries in two years, I definitely have a different perspective on what not feeling well means. I am optimistic that, finally, I’ll be able to feel better. I will get back the way I was before the brain tumor and balance problems, before the knee pain. It’s an opportunity that I know many people who endure similar illnesses and injuries don’t get – the chance to go back to full health.
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?
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.
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.
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.
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.
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.
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.
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.
In 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.
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
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.
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
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.
It’s too bright in here.
No. No, no, no, no, no. I don’t want this.
WHAT is that? They didn’t tell me about that.
I don’t want it, I don’t want it. I want to get up.
I’m going to be sick. I AM GOING TO BE SICK. Can’t you hear me?
I don’t have to calm down, this is wrong, I don’t want to be here.
No. No I don’t need this, I don’t want this.
Let me up. LET ME UP.
I’m going to be sick, again. AGAIN.
I don’t want to be here.
It’s too bright.
I’m told I didn’t wake up in the Post-Anesthesia Care Unit (PACU) with grace. I think perhaps luckily, I don’t remember the majority of the experience. What I remember most about waking up following 12 hours of brain surgery to remove an acoustic neuroma (more than 14 hours away from my family) is being angry that I was hooked to so many devices. I had three IV needles (though only one was in action), a catheter, a plastic bulb connected to an incision in my belly button collecting fluid, a heart monitor with five attachment points, and I couldn’t move my head because I had a heavy bandage wrapped around my brain like a donut. I woke up angry, and I woke up confused, and I woke up feeling, as I apparently slurred at my family, “aaawwfullllll.”
I was angry and confused. Either it was not explained to me, or I never processed the fact that I would have a catheter. Why this horrified me to the level that it did, I’m not sure. The sense of helplessness I guess. How suddenly and unexpectedly I had been transformed from an able-bodied 26-year-old, to unable to exert any control over even the most basic functions of my body made me confused. I wasn’t prepared to wake up in this new reality. I think, “will you put a catheter in me while I’m under anesthesia,” is something I should have asked when the doctors repeatedly beseeched me, “do you have any questions.” But, I didn’t think to ask. Even though it is obvious that I would need one, I hadn’t considered it. I hadn’t considered it because it didn’t even register as something to consider. I didn’t know that I didn’t know.
When I woke up connected to bags and tubes and needles late Thursday night I flipped out. My lack of grace included struggling to sit up, arguing that I didn’t need a catheter, and poking at the bulb collecting fluid, while repeatedly vomiting (into my oxygen mask at one point) before an increased cocktail of sedatives and painkillers finally took the fight out of me. At that point, though I don’t remember my Mom being there, she assures me I vomited on her too. Less than 48 hours before, I thought I would have surgery perhaps in a month. I thought I would go back to work for a while. I thought I had time to get ready for this.
Progressing too quickly
Only a week before I channeled Linda Blair from The Exorcist in the PACU, I was diagnosed with an acoustic neuroma. My diagnosis followed months of symptoms like headaches, dizziness, vertigo, hearing loss, ringing in my ear and numbness in my tongue. It was a long process to get an accurate diagnosis, and I had been assured that my type of tumor was slow growing. My doctors told me to take time to plan for my life to be disrupted by the surgery and recovery. These same doctors warned me to pay attention to the feeling in my face. The numbness I was experiencing in my tongue may just have been a starting point, so, if any other numbness occurred, my medical team needed to know. It could be a sign that the tumor was growing faster than anticipated, a sign that it wasn’t benign after all. If my doctors were going to save my ability to control and feel my face, it was important that there be as little preexisting nerve damage as possible. A week after being diagnosed, I woke up unable to feel half of my face. I was numb from cheek to chin on my right side. Not wanting to be alone, I did what made sense to me, and I went into the office.
I called the doctor too of course, and left a message with the patient coordinator about my new symptom. While I waited to hear from my phsicians, I worked. I tried to answer emails, and tie up some loose ends to square things away. My doctor asked me to come in to see her that afternoon, so in the spirit of “just in case,” I set my out of office message. A friend picked me up and drove me to my appointment. My doctor explained that she felt we needed to get the tumor out as soon as possible, that we really couldn’t wait because my symptoms were worsening at a worrying rate. “Tomorrow,” she said. Tomorrow? I should probably call my parents, huh?
I won’t even begin to speculate what this entire process has been like for my parents. I know calling my Dad to tell him that I needed brain surgery the next day was not easy, so I can’t imagine what it was like on the other end. Luckily, we had already decided what type of surgery I would have, and had been able to meet the surgeons. So, while my parents and my brother rushed from New Jersey to Boston, I was admitted to the hospital. My friend and I walked right from my doctor’s office into the emergency department and explained that I needed to be admitted. My boyfriend joined us, and the three of us switched from the emergency department to a room across the street by ambulance, then back across the street again by ambulance to a different room. I kept offering to walk, but rules are rules and I wasn’t allowed. Of course, I was rewarded for following the rules by losing my shoes during the room switching.
By now Wednesday afternoon had faded into Wednesday night. Things had moved so quickly I hadn’t had time to think about the reality of what was about to happen to me, to my brain, or to my life.
I left my friend and boyfriend sitting in my hospital room so I could get a pre-op MRI. I don’t have a problem with closed spaces, or noise, and I’d been fine during an MRI the week before to diagnose the tumor. So, when my nurse asked me if I needed anything to help me stay calm, I told her no. This was a mistake.
I didn’t really anticipate how LONG I needed to be in the MRI, because the one I’d had a week earlier lasted only 45 minutes. I also overestimated the strength of my emotional state. This time, the technicians needed to take pictures of the tumor to make sure it hadn’t grown. Then they also needed to image my entire spine to make sure there were no additional tumors. I was in the MRI for two hours. Alone. With my brain. My broken brain.
They tell you to hold as still as you can, but I sobbed for the entire last half hour. After the tumor was out, during a follow-up scan, one of the technicians told me that I was “a legend down here” for what had apparently been an out-of-the-ordinary, marathon, late night session.
Adding insult to injury, when I finished the MRI, the technicians placed garish glow-in-the-dark stickers, ringed in dark marker on my face. These stickers would serve as a map for the machines the next day, but that night I looked like someone stuck Lifesavers to my forehead.
When they wheeled me back to my room, I was still crying nonsensically and apologizing to absolutely everyone for losing my shit. This is how I entered into the first meeting between my family who had arrived from New Jersey and my new boyfriend, because, on top of brain surgery imploding any sense of normalcy in our lives, dating is still one of life’s most awkward rituals.
I eventually calmed down and tried to sleep, which anyone who has ever spent time in the hospital knows is not easy. It was morning and surgery time in the blink of an eye. They transferred me to the pre-op clinic, where both of my surgeons (one an ear, nose, and throat specialist and one a neuro specialist) came and talked to me. They ran through the procedure. They initialed the parts of my body they intended to cut. They explained the risks, all the things that could go wrong. I spoke to two anesthesiologists. I spoke to my nurse. I signed the consent forms. Everyone asked if I had questions – I did, I just didn’t know it, so I asked nothing. I gave my family a goodbye hug, and was wheeled away.
The last thing I remember is seeing one of my surgeons, and being asked questions – Who am I? Where am I? What day is it? Why am I there? Then there is nothing until I came to in the PACU, confused, upset, and angry.
I’ve been actively not thinking about the reality of the surgical procedure itself, because it is overwhelming to think that multiple people have literally seen my brain. My surgeons cut through the bone behind my right ear, and, because their approach cut a nerve completely, they destroyed my ability to hear on this side. This means I’m now deaf in my right ear. Part of the surgery involved packing the hole in my skull with fat taken from my belly button. This is what made the bulb at my abdomen to collect fluid necessary.
My family had been told it would be an all day surgery, but it took far longer than anticipated. One of the things the doctors had warned me might go wrong – “stickiness” of the tumor – did. The tumor was clinging to my brain, refusing to let go so easily. So my surgeons took extra time, ultimately clocking in at 12 hours after teasing out every piece. But they got it all, and were able to save my seventh nerve and thus my ability to control and feel my face. While there is no such thing as an ideal brain tumor surgery, my team got it all and avoided any damage to my facial nerves.
I think the decision to move quickly on the surgery was the right one, but it definitely didn’t give me time to process what was happening. I’m certain that contributed to my performance in the PACU. I woke up in a completely new reality that I wasn’t prepared to face. Toward the end of the day on Friday, my memories of the PACU become a little more solid. Apparently, I kicked off my hospital socks as part of my defiant outburst, and I remember being told I had the nicest feet there, which is amazingly awkward upon recollection. I remember my Mom and Dad being there. I remember feeling like the world was spinning. I remember hating the lights. I remember wanting to sleep, which I did a lot.
Late Friday night they moved me from the PACU to the Neurosciences floor. Saturday is a bit of a blur too, but I was definitely more with it than I was in the PACU. There were visitors and flowers mixed in among the vitals checks, finger sticks, and medications. Even though I was still hooked to the IV, they took away the catheter, the bulb at my belly button and the heart monitor. That helped a lot. I started to focus more on the donut around my head.
My hair was up in a knot, Pebbles Flintstone style, with a bandage wrapping around my head. There was a hard plastic piece over my right ear wrapped in more bandages. It was heavy. I felt like a bobble head anytime I tried to move, a sensation definitely aided by the fact that my vertigo was intense. My doctors warned me that the vertigo wasn’t going to go away with the surgery and was likely to get worse before it got better: they were right. I also struggled with my vision for the first few days after surgery. I had a hard time focusing and found things to be more blurry with my contacts in than my glasses. Combine my need for glasses with the bandage around my head, and I had a problem, thus I spent my hospital stay with glasses taped to my face.
I spent a week in the hospital following the procedure, which was an interesting experience in its own right. I had a constant stream of visitors, and was never alone, which helped tremendously to keep my spirits up. I fully utilized my ability to request quiet time for everyone so I could drop off for a nap. Soon I itched to get out of bed and walk, and I was surprised at how difficult it had become. Since my sense of balance was damaged, I wobbled and lurched around like I had consumed a few too many beers. I put my visitors to work, helping keep me upright, while I leaned on my IV pole and walked up and down the hallway in my slipper socks.
Hospitals themselves are ironically not restful places, particularly the neuro floor. The beds are pressure sensitive, so the nurses can tell if patients are getting up on their own when they aren’t supposed to be. Apparently this happens all the time, prompting a stream of running feet as nurses rush to make sure no one falls over. Getting woken up every four hours for a vitals check, and finger sticks to check my insulin levels wasn’t conducive to sleep either. With the bandage on my head I was unable to shower. After a week in the hospital, this was not exactly pretty, though I tried my best to clean up and feel normal (never really successful, but I tried.)
A week after the surgery, they removed the bandage and I was cleared to leave. The vertigo continued intensely, and traveling even the short distance between the hospital and my apartment was rough. I spent a week at my apartment in Boston with my Mom taking care of me. I was still having trouble walking around without tipping over, and I was unable to do things like wash my own hair. I napped a lot, but everyday spent more hours awake and more time on my feet.
Friday April 11, my stitches came out. As I celebrated this milestone, I frustratingly also developed a seroma, a build-up of fluid around my belly button incision. I found out this is also a common complication from liposuction. The sudden onset of swelling was really unnerving, but my doctors answered my phone calls late on a Friday night to set my mind at ease. I can’t say enough good things about my doctors. What times we live in when you can text a surgeon a picture of your belly at 10:30pm on a Friday and get a helpful, calming response.
Even with this complication, my doctors have said they are happy with my progress. I know it will be a long time before I can say I feel like myself, but that is the goal I am working toward.
What follows in this three part series is a personal narrative. All of the decisions I’ve made about my health were chosen in close consultation with medical professionals. My choices are mine, and not necessarily right for anyone else even with the same diagnosis. If you have concerns about your health I encourage you to seek out a medical professional, which I’m not.
“When you hear hoof beats, think of horses – not zebras,” is a widely known version of a quote attributed to Theodore Woodward, MD, late professor at the University of Maryland School of Medicine. He said this as a means of instructing medical interns to look for the most obvious, and likely, diagnoses first. The most obvious answer to a problem is usually the one that is correct, but not always.
I’ve been thinking about this quote a lot over the last year or so, like a mantra. Think horses. It’s just a headache, you sit at your desk too much. Think horses. It’s only a little dizziness, vertigo? You don’t get enough sleep. Think horses. Your right ear is ringing, an infection? Think horses. Think horses. Think horses.
Working as close to cancer research as I do can make you a little paranoid. I try hard to stay grounded, and remember that headaches are headaches for the same reason that hoof beats normally signal horses – it is simply unlikely for a headache and a little dizziness to be a harbinger of anything more.
My symptoms were easy to downplay, but when I started to pay attention to what my body was trying to tell me, it was much more than a headache and a little dizziness. It was a piercing headache radiating from the back of my skull and wrapping around the front of my head to above my right eye. It was the additional emergence of my normal migraines with a ferocious new frequency. It was vertigo that left me feeling unmoored multiple times a day, everyday. It was diminished hearing in my right ear that left me missing whole conversations, and constantly repositioning myself so people could speak on my left. It was ringing, incessant ringing, in my right ear. Eventually, it was fatigue. I typically walk 45 minutes each way to work, and I hit the point where I dreaded having to get myself to the office.
Of course, all this did not hit at once. It built up over the course of several months while I berated myself for worrying and reminded myself to think horses. I often joked with a colleague about the rare diseases I must have, things it’s absurd to think an otherwise completely healthy, 26-year-old would have. I kept expecting things to get better, like if I made it through the winter I’d magically start feeling like myself again (because that is clearly how the world works). I didn’t.
I’m really not making it up
The real drama started in February when my hearing loss had become a serious concern. I went for a hearing test that I passed, registering in the normal range. When the doctor who gave me the results told me I was fine, I stared at her in disbelief. I tried to explain that I couldn’t hear conversations that I couldn’t make out music and lyrics when my headphones were in my right ear. I tried to explain that identifying words was different from identifying tones like in the test, but the doctor just looked at me and said, “I trust my data.” As if I’m just making it all up.
Since I passed the hearing test, I wasn’t sure what to do next. So, I spent a few more weeks with the symptoms getting worse to the point that I was having migraines everyday, and actually didn’t go to the office because I was exhausted. Then, it was my tongue. I find it almost funny that my tongue was the conclusive sign something was wrong, but it was. It was numb, and I tasted metal. The migraines had sent me to my primary care doctor in mid-March, and at this appointment after I detailed all my symptoms, she asked me, “Are you feeling anything else?”
Completely as an afterthought I added, “My tongue feels weird.”
“Numb? I guess? I’m acutely aware that I have a tongue. Does that make sense? I feel it, but only half of it. And everything tastes funny, but only funny on the right side.” (Obviously, at my most eloquent.)
To my doctor’s credit, she didn’t let her concerns show, and since she was calm I was calm. She told me later when I mentioned my tongue she knew something was seriously wrong. She recommended I go for a CT scan of my head the next day. I took that day off work, and went for the CT in the early afternoon. It was quick and painless; I left the hospital around 3pm and took a cab home.
I intended to go to work the next day since they weren’t going to find anything and all this was just to rule things out because, well, horses. I didn’t entertain the idea that my joking about rare diseases may have had merit. I called my older brother, and told him explicitly, the idea that the doctors would find something on the CT was silly, and I was going to be fine. Later that night my phone rang it was my doctor calling at 8:30pm with the CT results. It probably goes without saying that your doctor doesn’t call you personally at 8:30pm with good news.
There are four ventricles in the brain. These ventricles are hollow cavities filled with your cerebral spinal fluid (CSF) the fluid that surrounds your brain. My fourth ventricle, the one at the back of the head, was compressed, putting pressure on the flow of CSF – but the CT didn’t show what was causing the compression. My doctor told me to go to the ER immediately, because I needed an MRI. Even then, I was completely rooted in denial. My health has been my privilege, I have never had any other medical problems, and I have a clear family history. It felt silly and paranoid to think it was anything bad.
In the hospital
Since I needed to get myself to the ER, I called a friend. I don’t have any family in Boston, but my friends are incredibly supportive. When I called and said I needed a ride to the ER, the response was, “I just have to put on pants.” Another friend met us there, and we were taken back quickly. After a brief bit of confusion about why we were there (my appendix is just fine where it is, thank you) I was told I needed a consult from neurology.
In the ER that night I saw two nurses, and three doctors (or four, around 1am I got kind of fuzzy, and I don’t remember any of their names). I did a lot of touching my finger to my nose and following the light with my eyes. I cracked jokes with my friends. We discussed the upcoming nuptials of another friend and the hotly debated issue of the wedding date. I wished I had sweatpants because those gowns leave a LOT to be desired. I wondered when I would get the MRI so I could get out of there and go home.
Around 2am, I was told I was being admitted. I felt silly about it, like, I’m fine, horses and stuff, we’re just ruling things out this is not necessary. I just wanted to go to sleep. I kept getting asked if I had questions. I should have questions, shouldn’t I? I was too tired for questions. So, I just let them push me through the hospital to the neuro floor (riding a bed with wheels is a weird thing, for the record). I was incredibly concerned about the fact that I didn’t have my mouth guard to keep me from clenching my jaws, and didn’t want to sleep without it. I was assigned a room, and a nurse, and a tech. Vitals were taken for what felt like the 10th time. My friends were allowed to leave, and come back to bring me my mouth guard and a pair of sweatpants. By the time they headed home for the night, it was 3am.
My nurse woke me at 6am to get me ready for the MRI. I’m not afraid of tight spaces, and I was sleepy, so I just let them do their thing. I was back in my room by 7:30am, ordering a bagel and coffee for breakfast. My friends returned and we spent the morning hanging out as if we were anywhere but the hospital. I was texting my parents, but didn’t want them to worry since it was all a lot of fuss for nothing, so I downplayed the situation.
My primary doctor, who had ordered the CT and told me to go to the ER, came to see me that morning. It was reassuring to see a familiar face. She said they were waiting for the MRI results, and we’d know that day. Around mid-morning a group of doctors came in and asked me to go through the whole story and describe the events that had led up to me landing on their neuro ward. They said they would be back with the MRI results. My friends and I watched some mindless daytime talk shows. Then we watched the Jetsons, because daytime TV is the worst.
It was early afternoon when the doctors came back. There were five of them, ranging from medical student to the neuro attending. There was more medical history, and touching my finger to my nose. They pricked my tongue with a pin. After this, they told me the MRI results. Sitting in that hospital bed on March 19 with my friend and five doctors staring at me, I heard the words, “we found a mass.” The doctors told me that I did have a tumor, but it wasn’t a type of tumor they often see – the MRI hadn’t shown a horse, in fact, I had a zebra.
One of the medical students (a nice guy, though perhaps a tad too gleeful about this) told me I have a type of tumor most medical students only get to see in textbooks. My tumor, in the inner ear, is called a vestibular schwannoma or an acoustic neuroma (the two are interchangeable). Your cerebral nerves pass through your brain and go out into your body to control all of your various functions. My tumor was growing on the eighth cerebral nerve (compromising my hearing) and putting pressure on the seventh (the numbness in my tongue because the seventh controls your face). It was between the cerebellum and the pons areas of my brain, and pressing on my brain stem.
Your inner ear is where your vestibular system, which controls your sense of balance, is located. Vertigo, the dizziness and spinning sensations I’d been feeling, is a common symptom of vestibular dysfunction. The location of the tumor meant that in addition to ruining my hearing on the right, my vestibular system was also seriously damaged.
According to the Acoustic Neuroma Association, these tumors affect one out of every 50,000 people and are typically diagnosed between ages 30-60. Any tumor is scary, let alone a tumor near your brain that is threatening your ability to move your face, but it also has a fantastic prognosis. I was told it is typically a slow growing tumor, so I’ve probably had it for years. These tumors are highly likely to be benign, meaning it won’t spread and become lethal. I write about neuro-oncology enough to know that operable is one of the sweetest words in the English language. I’ve had to talk to and tell the stories of family members who lost their loved ones to brain tumors that couldn’t be removed. I have never been so relieved by anything in my life as my zebra, because if it had been a more common type of brain tumor, I would face a very different outcome.
Instead, there are treatment options, all of which end with a full recovery albeit with scars. For someone like me who has had headaches and vertigo symptoms for years, I may leave all this better than I’ve ever been – this tumor needed years to grow to reach 2.4cm, and I’ve been unknowingly living with these symptoms the whole time. I decided that, for me, surgery was the best option. I felt that it would give me the best chance of never having a recurrence, and would preserve my ability to move and control my face. When I went to meet with my surgeons, they retested my hearing. The results showed that my ability to hear out of my right ear was at 56% meaning that functionally I was right all along; I couldn’t hear conversations or make out words. Since the nerve damage to my hearing would not recover, I chose a translabyrinthine approach to the surgery, which cuts the eighth nerve making me deaf in my right ear. This was a heavy decision, but when I considered all the choices my parents, surgeon, and I agreed this was most likely to give me the best outcome.
I was told that the timing of the surgery would be my choice, because this type of tumor was so likely to be slow growing, so I made plans to be away later in the month. My doctors asked me, while I processed things and made plans for my upcoming absence, to make sure to tell them if anything about my condition changed, particularly with regard to the feeling in my face. Since the tumor was seriously threatening the seventh cerebral nerve, the secondary goal for the surgery to remove it was to save that nerve. It could be the difference between having half my face paralyzed, I was told, and being completely normal. I kept being assured that I had time.
A week after I was diagnosed with an acoustic neuroma, on March 26, I woke up unable to feel half of my face. On my right side, from my cheek to my chin, everything was numb.