All posts by erin

AAAS 2017 Conference Recap

The program book for the 2017 AAAS conference. Photo by me.

The program book for the 2017 AAAS conference. Photo by me.

This year, the American Association for the Advancement of Science (AAAS) held it’s annual conference in my neck of the woods (Boston) so I was able to take a few days away from the office to attend. In the realm of conferences that someone in my field might consider going to, AAAS always stands out because it isn’t strictly a communication conference, and it isn’t strictly a science conference – it’s definitely both, with a generous dose of science policy thrown in for good measure. For its range of content AAAS attracts a very eclectic group of attendees. Anecdotally, I think the conference caters a lot to young people, but there are plenty of mid-career and established people who attend as well.

This was my third AAAS conference, and I think the value of science communication is becoming more and more apparent because it has taken an increasingly important place in the conference line up. Thursday (February 16, 2017) the first day of sessions, I attended the communicating science seminar, which was a lineup of three different panel talks the topics of which were: “Who’s your audience?,” “Scientist motivations, support, and challenges for public engagement,” and “The online scientist: social media and public engagement.” I think all of these sessions were sculpted to appeal to scientists more than science writers but there was a lot to get out of them as a science writer.

A few of my key take aways or sound bites from the communicating science seminar are:

  • Look for opportunities to inject science communication into events and programs that already exist, ie: setting up a hands on science booth at a local fair, to bring science into the fabric of a community.
  • Policy is shaped by the relationship between science, the decision makers, and the public. If the public doesn’t understand or doesn’t like the science, the public pressure on the decision-maker to choose an option not supported by the science can be great – this is why having strong public engagement and understanding of science is so important.
  • There is a difference between simply pushing out information and engaging with people, getting them to feel invested in the science by building a relationship.
  • Most organizations are designed with a top-down power structure, but the public often isn’t looking for top-down lectures from scientists. Adult-to-adult conversations can go a long way toward making people feel respected and thus willing to listen to what you have to say.
  • Try to avoid preconceptions about where people are starting from in their scientific understanding, and acknowledge that sometimes you are not the best person to lead a specific conversation or event. It can be incredibly valuable to facilitate the leadership of others by helping to clear their path.
  • You can step out of the role of “the expert” without abandoning your expertise. This looks like having a conversation instead of a lecture. It includes listening to people as well as sharing what you know.
  • Remember to read the room and consider the personal dynamics to gauge what type of communication is likely to provide the biggest rewards.
  • Often scientists [and communicators] think that informing the public is the goal, but perhaps the goal could be to help the public identify the scientific information that is valuable and useful to them. This might change the relationship people have with science and scientists.
  • Two of the most common barriers to science communication and outreach for scientists are time and a lack of institutional buy-in that engaging the public is a part of the job rather than a side interest. The ideal scenario is one in which science communication activities are seen as helpful to one’s career as a scientist.
  • People enjoy being told a story, it is often easier and more like science to provide just the facts but for the public facts need framing. Giving the facts context can go a long way toward communicating their value.

Overall Thursday brought a series of interesting conversations, with a great lineup of speakers who brought a nice array of points of view to the table. There were a lot of scientists in the room (they did an informal poll by show of hands) who self-identified as interested in doing more science communication, which I think is a great thing. This shows scientists have bought into the importance of outreach and are looking for avenues to explore. A lot of these lessons about effective engagement of audiences are applicable in my work too. For me, the most striking thing was that respect for the people you’re trying to reach is key.

On Friday (February 17, 2017) Naomi Oreskes gave a plenary talk called “The Scientist as Sentinel” that touched on a lot of the ideas that were mentioned during the communicating science seminars. Oreskes is the author of the book Merchants of Doubt about the scientific “experts” brought in to shape public opinion and policy on everything from smoking to climate change. It’s a wonderful book, and, though it certainly filled me with righteous indignation, I would encourage everyone to read it. Oreskes’ talk was about the role that scientists can (and should be encouraged) to take in standing up for their science and themselves. She started off by saying that often scientists want there to be a bright line between science and policy, and as such they tend to want to “let the facts speak for themselves” because speaking up publicly about science dulls that bright line.

Oreskes talked about how their is a continuum of ways scientists can approach defending their work ranging from completely hands-off, leaving it to others to communicate with the public, all the way to the activist ideal, suggesting policy and perhaps even demonstrating (or getting arrested) in defense of the work. She advocated that scientists could seek middle ground, as a “responsible scientist” model of outreach.

The description of Oreskes talk in the program. Photo by me.

The description of Oreskes talk in the program. Photo by me.

Oreskes made the comment that [with regards to climate change] what is rational is to be alarmed, and what is irrational is to be complacent. Scientists, who bask in the identity of being rational, can therefore identify the value in speaking up. She brought up the idea that climate change denial is not about facts, because, if it were, the alignment between a person’s political affiliation and their beliefs about climate change wouldn’t be so strong. When arguments aren’t about facts, they can’t be refuted with simply more facts. When it comes to scientifically controversial issues, the argument is often the same, if we deal with [insert issue here] it will lead to bigger government, and thus constriction of our freedoms. It isn’t a scientific controversy at all, but a clash of political ideologies. Scientists aren’t going to get very far bringing climate data to an economic and political ideology battle.

Oreskes put our current landscape for scientists speaking up against the historical backdrop of the scientists who spoke out against the use of nuclear weapons. Often, these were scientists who were involved in their creation. Her argument was that those scientists never lost scientific credibility for the act of taking a stand. Their science is still regarded with respect by their peers and the public. The same can be true for scientists who take a stand today. One of her closing thoughts was that scientists who have become the target of personal attacks were not attacked because they spoke out in public, instead they became public figures because they were attacked for their work. Ignoring the situation will not help or insulate scientists from the need to defend important work.

For me, Oreskes talk was one of the highlights of the conference, and I’m glad I was able to attend.

Of the rest of the sessions that I attended over the course of the conference there are two topics that stood out to me as particularly important (and about which there were several sessions each). The first is CRISPR, and the ethics, policy, and scientific progress being made with regards to human gene editing. The second was fake news and the distortion of facts. Both of these seemed like trends with regards to what people are concerned about and interested in.

From the CRISPR sessions, one of the main ideas that I took away is that if (as is currently recommended by the National Academies) human gene editing is only urged for “serious” health problems we need to define what counts as serious, and determine who gets to make that decision. If we are urging against changes that could be considered “enhancements” we need to find the line between treatment and enhancement, and, again, decide who will make that decision. If we’re looking to our government to make these policy decisions, it’s important to remember that, due to the separation of church and state federal scientific agencies (such as the Food and Drug Administration) don’t have the mandate to take religious beliefs into account when making decisions, despite the often religious-based concerns held by the public.

From the fake news sessions, what I walked away with was a sense that while it is a problem, there is reason to hope because fake news has always existed. Media has always been fragmented, rather than monolithic, and there have always been issues that Americans did not debate civilly. Fake news used to be found most often in the fringe – radio, newsletters, and in face-to-face conversations. The internet has changed the accessibility and spread of fake news. But even “traditional” outlets like television have been responsible for the spread of false ideas, like the fact that a majority of Americans believe that Sarah Palin uttered the words “I can see Russia from my house” when really it was Tina Fey, pretending to be Palin on Saturday Night Live. From all of this it may seem like people don’t care about or respect science, but they do. If you didn’t value science, you wouldn’t want to have facts or data on your side. Perhaps there is a way to tap into that trust in science.

Overall it was a conference that was very applicable to our current science communication landscape, and that left me with plenty to think about with regards to how I can be most effective in my job moving forward.

Note: I did not individually call out many of the speakers in the sessions I attended (though I did link to some and all can be found in the AAAS 2017 program). This is because, by and large, what I’ve written here is my synthesis of what I heard, sometimes combining several speakers and mostly put into my own words. I did not want to put responsibility for my interpretation of information on someone else unless I felt confident that my notes could accurately quote them. I do want to be very clear that these are not original ideas of mine but my interpretation of what others shared.

What I’m Reading: The Firebrand and the First Lady & Hidden Figures

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.

The Firebrand and The First Lady by Patricia Bell Scott

The Firebrand and The First Lady by Patricia Bell Scott

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 by Margot Lee Shetterly.

Hidden Figures by Margot Lee Shetterly.

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.

A day in the clinic: shadowing a physician

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.

Thumbs up for having a job you enjoy.

Thumbs up for having a job you enjoy.

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.

Collateral Damage

My left knee directly after surgery accompanied by ice packs.

My left knee directly after surgery accompanied by ice packs.

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.

Knee all wrapped up in bandages a few days after the surgery.

Knee all wrapped up in bandages a few days after the surgery.

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.

Knee without the bandages, about a week after the surgery.

Knee without the bandages, about a week after the surgery. You can see my surgeon’s initials where he signed my knee before the procedure.

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.

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.