Strange and I learned at the end of 2021 that we had lost an unexpected pregnancy. We had decided not to have more children, so I was surprised at the feelings of sadness I felt. I don’t think I had fully contemplated the idea of children together until we lost our son very soon after and decided to be open to whatever the future held. Another pregnancy followed several months after, followed by another miscarriage. This time, I was devastated. We recently learned that we are expecting again. My family has always been my top priority and I’ve come to realize that my current academic life and another try at motherhood are not compatible. I will always be grateful for the opportunity to have served the people of my state and for the support they’ve given me.

Most importantly, what have I loved about this job and what kept me around?

The people. The people in my lab are the best. I’m not sure how it happened, but I’ve ended up with a lab of the most brilliant, supportive people I know. It’s been truly remarkable to watch a group of people from such incredibly different backgrounds grow and learn together. They help each other, mentor each other, and cheer for each other. Their successes and smiles have been the highlight of my nine years at the university. I have trainees that have been successful in industry, medicine, teaching, and that have their own faculty positions now. I also have some of the best colleagues in the world and, in particular, helping some of my junior colleagues secure funding to grow or establish their research programs has been a lot of fun. I love that part of my job. I may be one of the few weirdos in the world like likes seeking research funding, and I’ve been pretty good at it. I’m proud of the awards I’ve won for my teaching and mentoring. This is the part of my decisions that makes me cry.

The questions. I got a little misty yesterday watching a student and a collaborator talking about the next steps in a project I started but won’t actively be part of continuing. I think that one of my best skills is finding connections across fields to build novel questions. I’m excited about my field and where it is going. I love to write, and read, and explore. I’m proud of the awards I’ve won for my research and research is my primary love. I became a professor because I love the laboratory.

I love respiratory physiology. In 2021, I wrote in the American Journal of Physiology:

When I saw Ewald Weibel’s classic micrograph of the respiratory membrane, I marveled over the fact that the alveolar wall is only two cells thick. I laid awake at night pondering how something so delicate could also be overbuilt for many of the demands of gas exchange. Now, as a faculty member, I show that image any time I teach about the lung and it still makes me catch my breath to see the short diffusion distance between the inside of the alveolus and the erythrocyte.

That micrograph still takes my breath away every time I see it. In the lung, two cells are all that separate our entire cardiac output from the rest of the world. A lot of my colleagues don’t like teaching respiratory physiology, but I love it. I developed a flipped classroom course on the topic years ago and I love it. The lung is an engineering puzzle, perfectly solved for us and even further improved for the bar headed goose. I must be a lung nerd because a colleague called me late at night over the weekend with questions about the alveolar gas equation and I gleefully answered them. Serving as the Chair of the Respiration Section for my academic society has been among the honors of my life.

The fear of disappointing people. The importance of this one isn’t to be underrated. I didn’t have many female mentors during my training, and I believed it was part of my personal mission to create opportunities for people that didn’t have access to academia. I gave so many talks about parenthood and science and work-life balance. I’ve taken pride in my efforts to support diversity, equity, and inclusion, and feared I’d let people down if I couldn’t hack it. The reality is that the pipeline isn’t leaking. There are holes being punched in it.

So why is it time to go?

There’s not a single reason, but a cache of things that I can’t see how I can sustain and manage an infant.

The space. My research space has become a bit of a running joke, including the fact that I managed to get tenure without my own, functional lab space. When I came to my university, they gave me some newly remodeled space in an old building without a vivarium. It wasn’t convenient, but I gleefully pushed carts from the vivarium through snow and slush because I had an opportunity to build my own lab. Then the space flooded and destroyed my equipment. I rebuilt. It flooded again. I rebuilt. It flooded again, and I realized that I was paying staff to spend time cleaning up and it was hurting their morale, I was spending money replacing supplies that weren’t covered by insurance, I was wasting experiments that couldn’t be finished, and the solution to extend my tenure clock had the potential to hurt me professionally and financially. Strange had a new lab 0.7 mile away and offered to let my technician and student use a bench in his lab. I was at a critical point in the tenure process and snatched the opportunity and our work grew to become more closely aligned by virtue of the proximity. As several of my key collaborators left, he became my primary collaborator. Our work together has been rewarding, but it wasn’t what I planned to do.

And, it didn’t come without its costs. I was admonished by a senior colleague to not be seen as “riding [my] husband’s coat tails to tenure” and I received a letter from a senior administrator reminding me to not be seen to be behaving unprofessionally with “[my] husband.” Routinely, someone “discovers” that Strange is my husband (although I am always entirely transparent and the university has encouraged and celebrated our collaboration) and I have to re-adjudicate whether there are aspects of my job I have done incorrectly or am even allowed to do by virtue of the fact that my husband is also my collaborator.

It’s also hard to manage a lab that is so far from my office, particularly as the lab has grown and more people have needed me. I spend a lot of time traveling between my office, my lab, teaching, service, and managing the needs of my family. I did the math recently and realized that just walking can add up to an extra 5-6 hours per week. The expectations for me are not different from my peers. It just takes me more time. As my lab has grown, I have felt the additional pressure to have funding to support someone to provide regular supervision for our students. And, having my lab and office so far apart means that either I am spending the time traveling or I’m not providing the supervision people deserve and I’m working harder to meet expectations for my success and promotion. At a recent conference, a colleague introduced me by lauding the highly translational and integrative nature of my work. It has been a major effort to do this type of work and I’ve always been proud that my lab is one of the few places people can work with everything from molecules, to cells, to larger models, to people.

Two things gave me hope. The university formalized my arrangement with Strange so that it wouldn’t hurt him to have us in his space and I wouldn’t be kicked out on a whim, and the university started a major building plan that includes a new building for my department. I was hopeful that this would ‘bring me home,” but the university has decided that my research is not compatible with the new building. My office and lab will either always be far apart, I will be separated from my department, or I will have to change my research direction again. It’s been hard for me to wrap my mind around any of these and I’m not sure how to manage a new baby, breastfeeding and pumping, and running my lab the way I have been when I know it’s forever. It’s disheartening to always be the person whining about her space.

The virtual. I don’t think we’re ever coming back from Zoom. In the pre-COVID world, I could decline a meeting because I couldn’t walk to another meeting in time. Now, people ask “Can we just hop on a Zoom?” and plug things into places on my calendar they see open. I’ve seen meetings of people who are all sitting on Zoom in the same building. When I’m in the lab and not in my office, I don’t have a space to do it and have to find a place to duck into or run back to my office. On the occasions I’d leave early to help my children or there was a snow day, I wouldn’t take additional meetings. Now, I can hop on Zoom at home. But, this is stressful because my family expects my attention when I’m with them and my husband might walk through the frame (see the above paragraph about being professional). I’ve tried to resist, to no avail. Being less available means being the difficult one. Zoom gives me tremendous anxiety because it has turned my day into a Tetris game that must be solved before it can begin. The virtual life has been convenient for many people, but not sustainable for me.

The students. I love my students, but teaching has not been the same since COVID-19. Students demand more hybrid and online content, many do not attend class and then shoot emails about questions they have when they watch a lecture asynchronously, and some of our students have more serious mental health issues than before the pandemic. It’s not fun to teach in an empty or semi-full room. Teaching takes more work than it did before, but workloads haven’t changed and universities are very concerned about the potential budget impacts of declining enrollments.

The startup. In 2020, I started a new company on a whim to commercialize a research technology I started developing 20 years ago. I joined the local startup incubator and have had more success than I anticipated. We’ve won some awards and pitch competitions and I think I could be a pretty good CEO. I’ve realized that the skills I have that have made me successful are not necessarily academic skills. They’re universally valuable. I’m a great scientist, a skilled writer and communicator, a fantastic mentor, a great project manager, and I’ve been successful in creating collaborative teams. I think there are potentially other venues where I could be very successful and I am going to see what happens.

The finale. Strange told me he spoke to a senior colleague earlier who asked if I am happy and he said “yes.” That’s not really true. My emotions are much more complicated than that. I’m sad about the parts of my job I love that I am leaving behind, I am tremendously relieved at knowing that I am prioritizing what is most important and that I won’t have to feel guilty at trying to reconcile my commitment to my baby with the seven sided Rubik’s cube of my career, and I feel hopeful that the skills that have led me to success in academia will prove valuable in other venues.

For now, we’ll just chill ’til the next episode.

I’m still dreaming of chickens, but I’ve also found a home over at Skepchicks. Wanna see what I’m writing? Check me out!!!

Guess Who’s a Skepchick?!?!

The Alleged Social Contract of the Airplane Seat

COVID-19 May Be A Public Health Crisis…

With Warren’s Concession, There’s Only One Path Forward…

 

 

I don’t think I’ve ever posted a product or website recommendation before, so bear with me. I’m only posting this because it is changing my life.

I love to cook, and I hate planning meals all week. Recently, we’ve been eating out much more than we should because I hate all the prep and planning, I hate listening to kids whine when they don’t care for something, and I haven’t had a huge appetite. I hate going to the super market. I realized that this isn’t great for my family.

I’ve tried a bunch of the dinner delivery options like Home Chef and Blue Apron and they’re fine, but there’s not enough food for leftovers. That means I still have to go to the market. Have I mentioned I hate going to the market?

So, a little more than a week ago I heard an ad for eMeals and checked them out. The premise is that every week, you can choose from different recipes from different meal plans. They have keto, paleo, less than 30 minute prep, low fat, and vegetarian plans. Here’s the part that’s changing my life though. Once you choose the meals, they’ll send the ingredient list to the Walmart mobile app. Walmart picks and packs all the ingredients. You drive up and they load them in the car. I haven’t been in the grocery store in two weeks and my life has never been better. I just stop by on the way home.

The meals have been outstanding and I’ve had plenty of leftovers for lunches during the week. TD is usually my pickiest eater, and she’s loved every single meal. Even meals that have ingredients she doesn’t usually like, like corn and zucchini. Tonight she had seconds of a pasta dish with zucchini. Its been great because I can chose 80% keto friendly meals and intermittent carby meals for food in the family that need an occasional carb.

So, I’m changed and as a working mom with a husband who works like a maniac, this has been a total game changer.

If anyone is interested in trying it, slide into my Twitter DMs (@batesphysio) and I’ll send you a $10 coupon. Or don’t. Either way, these eMeals are my new way of life.

I’ve been writing on Twitter lately about how my health has evolved since the beginning

of 2019. I’ll preface by saying that I am healthy at the time of writing, and am generally feeling pretty good, but in April I had a gastrectomy and a GIST tumor resected. I’m really lucky that my GIST was relatively small and had very clear margins. I had all the necessary pathology done, including defining my mutation. One of the more interesting things to come out of all of is that I learned that one of my grandmothers died of “stomach sarcoma” at 28 years old. These types of cancer are more rare in younger folks, so I have a followup appointment with a genetic counselor to determine if my particular GIST is heritable. I’m just starting to get to the point where I can begin to ponder that this happened.

 

Because I’m a scientist, I have been doing experiments to see what the actual volume of my stomach is post-resection. I’ve got about 3 ounces to work with. Mentally, I’ve been working through the fallout, but the immediate consequences have been much more physiological. I have kept active, but can’t really eat more than about 6-7 bites of anything. I’ve lost almost 60 lbs, which isn’t terrible because I had it to lose. The real challenge has been my inability to accept that I’m not a superhero or that my life would have to really change. Strange has been gentle and loving, reminding me to give it six months, but my lack of acceptance keeps manifesting itself when I travel.

Having such a limited intake means that I have to eat and hydrate throughout the day. I’ve got all these new rules for eating and drinking. When I get up at home, I have coffee with 30g of a protein supplement mixed in. Then I wait and have breakfast. Maybe an egg or half a yogurt. Then I have to wait at least 30 min before I can drink any more. Then I drink until lunch. I have something protein-laden for lunch and, wait another 30 min. Particularly if I go to the gym, I drink something with an added protein supplement.  Dinner is the same, with more waiting until I can drink anything again. I shoot to hit 70-90 g of protein and 70-90 oz of fluid. With the breaks between eating and drinking, and the size of my stomach, I basically eat and drink all day to hit my goals. It’s very primal, and I still only hit 800 calories on a good day. I love keto, but too much keto is hard on my stomach. There’s lot of stuff that I can’t eat because it will upset my stomach, or it doesn’t taste right, or it gets stuck. 

In traveling, I’ve learned a lot about myself and people and I just need to shake myself and tell myself to get it together. When we went to Nashville last month, I lost 6 pounds in the week we were there. Last weekend I went with friends to celebrate an impending wedding. Like a lot of people, they ate a single big meal a day and one smaller snack or meal. They’d drink fluids at meals. The first day, I knew this was a dangerous situation for me. By the second day, I was starting to feel the nauseated feeling I get when I am not eating or drinking enough. Today, four days after the beginning of the trip and my first real day back in town, I am a wreck. I feel exhausted, shaky, and nauseated. I lost another pound and a half on the trip. It’ll take me another couple of days to get back to “normal.”

I am trying to harken back to Strange’s advice – to give myself six months to adapt. Some foods won’t make me sick forever. But I think there are some changes to my life that are going to be forever, and I still haven’t figured out how to navigate that socially. My entire life right now revolves around the next meal. It’s hard for me to ask traveling companions to sign on for that and I have learned that my default setting is to not rock the boat. I’m not always a good advocate for my own health and I don’t want to be defined by this. I’m not currently comfortable in my own discomfort. I’m an intensely private person in, well, person and this is hard for me.

There’s another aspect I amstill wrapping my mind around, too. I can’t really drink alcohol anymore. It upsets my stomach and, because things move to my intestines so quickly, it takes a minimal amount of alcohol to end up falling down drunk. I was never a heavy drinker, but I am learning how many people had the perception that I was a drinker and how that has changed our relationships.  I know that people are nervous that I won’t be “fun” without a cocktail. I don’t know how to navigate that landscape yet. I still think I’m hilarious.

I’ve been thinking a lot about this the last couple of days because I am also preparing to go up for tenure in a year. Early in my career, surviving to tenure and conquering my assistant professor years seemed like climbing a mountain. I watched people on social media and around me going through the process, reaching tenure and looking like they had just run an ultra marathon. They talk about the need for resilience. Well, I have learned that there are things that require much, much more resilience than getting a paper rejected or a grant triaged.  The prospect of not getting tenure seemed like a life-ending experience for some. Post-surgery it’s lost a little of the gravitas. Of course, I want to continue my work, I want to train students and help patients, and I want to have been a good investment for the people of my state and institution that have funded my work. But, I’m still alive, and I can survive an awful lot, and I’m not afraid anymore. I’m just going to keep doing my job to the best of my ability.

I’ve still got a lot to learn about myself, and a lot to work through in terms of defining relationships with food and people. I don’t know how to end this post except to say that I’m working on it all a day at a time.

 

 

I wish that I could share with you the true experience of what is happening in my house right now. Particularly for any of you that feel like you’re failing at motherhood. If you had asked me 12 years ago when Little I was born to predict this event, I surely could not have.

After dinner, I went out to the back deck and Little I joined me. The setting sun bounced of his wee nose, revealing a little blackhead. Little gives me more joy than a clean nose, so I sent him upstairs for the blackhead extractor. The 2 mm blackhead in question was indeed extracted.

And Little I has spent the last 30 min chasing TD around the house with it, threatening to wipe it on her.

At one point I heard him yell at her, “Wait!!! Why are you taking your clothes off?!?!”

“Because now you can’t take a video of you torturing me because it’ll be child pornography,” she replied.

I was not prepared to handle this situation, but I’m highly impressed by the depth of TD’s self-preservation skills.

When I started blogging and social media-ing, Little I was a little more than a year old. He’s getting ready to turn 13 and, while learning to be a mother in those infant and toddler years was challenging, nothing prepared me for teenager life. For all intents and purposes, save a couple of months, he’s a teenager.

There are so many day-to-day tasks that we do as adults that we take for granted. I realized this summer that, for as much as he does to help me, Little I needed “how to be human” lessons to make sure he really learns basic life skills without his mom nearby.

Last Friday, I asked him to make dinner while we ran an errand. I left him an array of options to make in the microwave. I left him only one instruction…

Do not put metal in the microwave.

I came home to the faint odor of burning polenta and a metal pot with an exploded lid. He had missed the only instruction I had given. He now definitely knows not to put metal in the microwave unless he’s trying to have a Tesla moment.

Yesterday, I asked him to load the dishwasher with dishes I had left soaking in the sink. The following conversation ensued:

There is truly nothing more terrifying than a single “crap” from an independent teenager. I spent the next hour trying to find him, visions of my flooded house in my head. Thankfully, it was just that he didn’t want to stick his hands into the dirty water, but is there anything more terrifying than a single “crap” from a teenager?

I saw this tweet on my way into work and it gave me all the sorts of feels.

This time of year always makes me think about what it was like to show up on my first day to work at my current university. I was what the kids these days call a “hot ass mess.” I didn’t realize a university email account had been set up for me and all of the information about orientation and benefits had been sent there. I waltzed into my new department on Day One and the other junior professor who had been hired with me stopped me. I was walking into the building and she was walking out. She grabbed me and said, “Where are you going?!!?!?! Don’t you know we have to be at the dean’s orientation in 10 minutes?” I said, “nope” and walked with her “across the river.” That day I learned that everything on campus is referenced to the river.  In the last five years, I have accumulated an abundance of Instagram river pictures.

I remember the dean’s orientation being helpful and I learned a lot about my new university, but it is not my most vivid memory of the day. I had worn a knee-length black skirt to work that had a pair of mesh compression shorts underneath. I’m not afraid to tell you, I don’t like when my thighs rub together and shorts are a necessity under skirts. The room where the orientation was held had these plastic desk chairs with a slightly rough coating.  We entered the room and sat down, and an administrator passed out the agenda. She made it very clear that if we did not stay for the entire orientation, we would not receive credit for attendance and the result would be very bad. I sat up straight and then realized that every micro movement was causing my mesh shorts to rub the rough plastic chair…

…resulting in the most terrible ass itching I have ever felt in my life.

I felt like a tribe of ants was crawling and biting all over my derriere. I tried to discreetly scratch my rear end. I tried to stretch. I tried to hold absolutely still. I drug my butt around the chair like a dog on the carpet. I tried to stand. Absolutely nothing helped. I tried so hard to tough it out because I didn’t want to find out what “very bad” meant. Six hours into the orientation, I absolutely couldn’t stand it anymore. I turned to my new colleague and whispered in her ear, “If I don’t get these shorts off right now, I am going to die. This might be my last day as a professor here” and I ran out of the room. It still makes me laugh that this is her first memory of me – whipsering into her ear that if I didn’t get out of my shorts my life would end. We’ve developed a really wonderful friendship and she intermittently reminds me of this event. And sends me memes about itchy butts and rubbing thighs.

I assessed the damage in the ladies’ room and my ass looked like hamburger. The chair had caused the shorts to abrade the skin off of my butt and upper thighs. Because the shorts were attached to the skirt, I needed to go home to change. Thankfully, the orientation ended 20 minutes later and no one noticed my absence. I did not have to explain to my new employers why I had left so abruptly.  How do you tell your new employers their meeting led to you needing to slather your ass in Desitin?

But, my awkward first day didn’t end there.

After the orientation, there was a reception scheduled. The deans, university president, other such bigwigs, were all there to welcome the new faculty hires. I returned and found my department mate. It was a tough decision whether to meet back up with her. On one hand, she was the only one I knew and is a pretty cool lady. On the other hand, I had just run out of a room to get out of my itchy shorts.  I’m a little awkward and a bit of an introvert in public, so I chose to stick close to my new colleague.

She did most of the talking and, when people would then ask me who I was, I answered, “We’re together.” In my mind, I was effectively conveying the back story. We were colleagues, hired at the same time, inhabiting the same department. After a few rounds of this, she leaned over and whispered, “Do you realize that people now think you’re my wife?” I did not change how I answered.

So, thinking about my advice to a new prof on Day One, the lesson is that you can survive just about anything on Day One with a little Desitin and perseverance. But then you have to get through Day Two, and Year One, and Year Two, etc.  There is no good way to convey what it’s like to move to a brand new place, with no connections, and start a new job with a ticking clock. Since I’m only about to go up for tenure, I don’t know that I’m in a place to talk about how to be successful, but I can talk about a couple of the things I learned.

• You can’t really be prepared for how lonely it can be to start as faculty in a new place, but you can be aware that it happens. Your potential friendship circle is so much smaller. So, be open to finding friendships outside of work and nurture them. Build your professional networks outside of your university too.
• You may establish connections with students, but you can’t be friends as long as you have a hand in their future. Create good boundaries. You’ll serve them better.
• Be prepared that everything takes five times as long as you think it should. Keep short term and long term project irons in the fire so that you always have something to go toward your productivity. This includes grants.  My pre-doctoral and post-doctoral grants were funded on the first round. That is not the norm at the faculty level.
• Keep an eye on your money. People make honest mistakes. You’re the only one who really cares.
• Be ready for your new prof smell to wear off. Your novelty will wear off over time and then you need to actually do some damned work. When the rewards and congratulations become less frequent, it can feel like a slog. Your students will start to generate wins that will be really rewarding. Be patient in that intermediate period.

And here are my two most important “words of wisdom”:

• Find your advocates. These are the people that will nominate you for awards and give your resources because your success as a junior prof is a feather in their cap and indicates their success as a leader. They write letters of support for your grants and help you find new collaborators. These are not necessarily the people you think they are when you start. Show them gratitude.
• Work with people you like. These are not necessarily the people you think you should be working with. Reliable, helpful, friendly, collaborators are worth their weight in gold and are far more valuable than cats with big names that you have to herd together. These collaborations are the most intellectually and emotionally rewarding.

Leave any other tips for our new prof colleague in the comments below!

 

 

I’m watching a friend on Twitter go through the emotions and machinations of having been an avid blogger and social media user through tenure…and then go through a divorce. I won’t link to it here because I’m not a huge asshole, but it made me think about my own experiences. My own wounds are only semi-raw, so I thought I would write a couple of words.

If nothing else, maybe it’ll lend some insight into my own process for those currently suffering through similar. Or maybe it’s just navel-gazing.

I have experienced loss and failure, both personally and professionally. Without a doubt, my divorce was the single most painful thing I have ever experienced. I’ve lost people I’ve been close to, and I have failed because of my own short-sightedness, but divorce is a loss and failure in a totally different way. There’s no way to communicate how bad the pain is to someone who hasn’t experienced it. For me, the pain was in the realization that I couldn’t keep a promise to another person. It was the only time I have ever really broken a promise, and it was compounded by the realization that my broken promise impacted my family, his family, and our children. None of them had signed on to our promise, but they were all caught in the fallout.

Diamonds may be forever, but marriage isn’t. Turns out, it’s not legally hard to undo a marriage. In my case, my ex-husband isn’t a bad person. He’s a likable guy and we still co-parent. I still love him. But, we had different views on what love looks like, how much of ourselves we were willing to share, and where our lives were going. Having to realize that, and then uncouple all of the things you built while you thought you were working together, turns something built with the hope of forever into a business transaction. I still cry when I think about the contrast between what I hoped for and what came to be. In my case, I think my children and I are better for the path we’ve taken, but no one dreams of being divorced. No one prepares you for the instability it leads to at a time when your heart hurts.

I went through my divorce as I was beginning a lab in a new place. Like the person referenced above, I had written a blog for years on the ins and outs of my personal and professional life. I wrote about my successes and failures as a scientist and mother but, my divorce was so extraordinarily painful that I could only keep that pain…and shame…to myself. More than anything, I felt like I had betrayed the universe

When I married Strange, we agreed to dispense with the “’til death do us part” and “as long as we both shall live” nonsense because I couldn’t bear to ever break that kind of promise again. We agreed to keep trying and to love each other’s children as our own. Those seemed like more realistic promises.

There is nothing like divorce to make you realize how deeply flawed you are as a person and there’s no handbook for dealing with that kind of hurt. Sometimes I thought I was past it, and would try to open up to the world about it, only to realize the pain felt fresher than I thought. Sometimes I hid. Sometimes I cried. I surrounded myself with people who loved me and I pushed people away. Sometimes I let people down. Sometimes I over-compensated. All of it led back to the guilt of my broken promise.

So, the last couple of years I have been trying a new approach. I’m just trying to find forgiveness. I’m trying to find a way to forgive myself. The hurt is still there and sometimes I need to let it wash over me like a wave.

When the wave passes, I try to remind myself of two things. First, I’m human and I can choose whether to learn from the paths that didn’t lead where I intended. It’s ok to take time to reflect and learn. I’ve learned a lot about love and promises. Second, I hurt because I loved so deeply, and that was a blessing in my life. Denying that hurt somehow denies my capacity for love. Remembering why I hurt somehow makes it tolerable.

Remembering that capacity for love lets me find it again, to stoke it and nurture it for the part of the journey I’m on now.

 

 

Yesterday I picked seven-year-old TD up from summer camp and was greeted by a counselor who gave me the following report…

Um, I’d like to talk to you about TD today. We had to talk to her because apparently she and a friend were spelling out bad words in the pool. I think it was the B word, the “F word,” the “S word, ” and the “H word.”

To which I felt the urge to query

Did she at least spell them correctly?

Those -tch and -ck words can be tricky, after all! If she got those right, she must be retaining something from first grade over the summer!

Way to make your mama proud, TD!

This morning I was sailing through the Twitterverse and saw a thread of tweets that caught my eye. I’ve been thinking about it all day. That usually means I need to write something.

I really had a lot of feels about it, both because I wholeheartedly agreed with it and also felt uneasy about it.

The feelings of unease came from my recent forays into cancer research. I began collaborating with Strange a few years ago because I was inspired by his stories. He’d talk about the gaps in our knowledge that translate to gaps in patient care. As an outsider, I felt like I might be able to look at some of these problems with a fresh perspective and add something new. It’s been a very satisfying journey, both intellectually and from the perspective that I can see that my work is going to help people. I’ve reached a point in my career where that’s really important to me.

I’ve always done clinical research and I have always tried to understand the actual mechanics of patient care. As a postdoc, my primary mentor was a pediatric intensivist and I would go to the pediatric ICU whenever I could. As a faculty member, I attend clinical research conferences and conferences where patient care is discussed. I manage a program in our cancer center to bank patient samples and clinical data, and I have spoken to patient groups about our work. All of this has been important in giving my work perspective and motivation. I don’t know if I would have been as successful as I have been without having been given the opportunities to see how the sausage is made. But, that’s me and what I find motivating.

So, where does the uneasiness come from? It comes from the fact that different things motivate different people. There’s a reason many become scientists and not “real doctors”…or “physicians,” as Strange likes to remind me. Patient care is about more than physiology and pharmacy.  Patients engage the medical system, not as bags of molecules, base pairs, and phosphorylation signals, but as sentient people who may be in the middle of the most challenging ordeal that they’ll ever face. They have complicated social situations, and emotions and fears, and people who practice medicine are more than mechanics. They deal with the social, physiological, and psychological in each interaction. As scientists, most of us are only trained in a single dimension. We may have the tools to understand the biochemistry, but not necessarily to deal with the mark that these interactions would leave on us.

I’ve been fortunate that my training has contained clinical elements and that I am now able to translate these into a clinical program, but that doesn’t mean even simple patient interactions are easy.  Several months ago, a physician colleague contacted me about an unusual cancer patient situation to see if I could offer insight based on the physiology. I felt proud that I could say, “I think this is a classic presentation of blah, blah, blabbity blah, blah of the lungs” and I turned out to be correct.

I thought it was such an interesting problem that I contacted other colleagues to write a case report with me, to explain the physiology to other clinicians who might encounter the problem.  I went through our IRB and then contacted the patient’s wife to facilitate consent. She was amazing.  She and her husband were enthusiastic that his ordeal could be used to help future patients. Through this case study, I’ve remained connected to her…and, therefore, had a front-row seat to her husband’s extremely prolonged hospital stay, worsening of his condition, increasing intensity of intervention, and eventual death.  I’ve had access to her grieving. It left a mark on my heart and I cried when she lost her husband. While I am very happy to be doing patient-centered research, I don’t know that it’s crucial to have made a personal connection with an individual or walked with someone’s pain to be a good researcher. As an outsider to the healthcare system, one doesn’t necessarily have access to the training and resources that clinical colleagues have to deal with experiencing that pain.

The real source of the uneasiness is, after thinking through my own experiences and writing too long of a post, if interacting with patients in the clinic is important for scientists to gain perspective into what patients are experiencing, what tools do we need to give those scientists to deal with the impact of what they experience?

I might be rambling at this point. So, back to the original tweet where the lovely poster advocated for a “Bring a cancer scientist to treatment day”. Patient advocates, stories, and groups give us incredible perspectives, but that’s different than seeing someone receiving treatment in the clinic.  There is a very important role for patients in setting research priorities, but I think there are reasons that some people choose the bench and not the bedside in order to do their helping.  It’s ok to want that “in the moment” perspective if it drives your research. And, it’s ok not to want it.

I really empathized with the poster’s thought that scientists should understand what patients go through in their treatment and I hope that we can keep working with patients to open multiple avenues for patients to become involved in our research and share their experiences. I think the entire enterprise will benefit if we each do a better job of engaging patients, and that’s the real call I heard from people who replied to the thread.

We can always do a better job of communicating with patients about what we’re accomplishing. That’s something I’m working on myself.  The enterprise will benefit if some of us are engaging our clinical colleagues more. The enterprise will benefit if we’re working with patients to lobby congress. Some people will benefit from direct clinical, patient interaction and we should be supportive of that by making sure researchers and patients have the resources they need to facilitate these interactions. Patients should be involved in setting research priorities and helping us identify gaps in our work that are important to them. Different scientists are going to be better suited to work in each of these spheres, but I have no doubt that the biggest advances come when we work together.