Making healthcare about people

When my mom went through cancer treatment, I got to experience what felt like a world tour of hospitals, clinics, emergency rooms, doctor’s offices and infusion centers. It was two years of way more healthcare than anyone would want to deal with, and it was eye opening.

My mom’s bladder cancer metastasized to her sinuses. She had chemo and then surgery in early November to remove the mass and her bladder. By Christmas she had a pounding headache that wouldn’t go away. Her scans in February reveled multiple new masses, but an MRI of her brain was clean and didn’t show anything, so the headaches remained a mystery until the Spring. She asked if it could be a tumor, but she was told that bladder cancer really doesn’t metastasize to the sinuses.

Ultimately, she was sent to an ear, nose, and throat specialist. They saw the tumor with their scope and sent her to the hospital so they could biopsy it. By this point, mom and I had many, many months of medical experience under our belts. We had go bags for the ER, infusion clinic, and any other place we could think we might spend time. But my mom was miserable. She hurt all the time, and the hurt was exhausting. She had trouble sitting up in a chair in a waiting room. She had scared people (patients) at one of the facilities we were at for a CT because she kept falling over and moaning. The medical staff was lacking, and the only people around were other patients and me who tried to make her comfortable. I will say, people were always incredibly kind to her and to me during all of these visits.

We went to the hospital he sent us to. When we got there, we were greeted by a nursing assistant. This was a high end, private hospital. She stayed with us through admission and made sure my mom was comfortable. She found mom a bed and came and checked in on us every half an hour. She said her job was to make sure we knew what was going on and to make mom as comfortable as possible. Most of what she did was hold my mom’s hand and listen, but that was revolutionary. My mom, for the first time in months, wasn’t scared. And with that, she felt better. It was more powerful than any drug she ever received.

With COVID cases climbing and omicron beginning to take off, there are calls to increase nursing staff. We needed those calls and action on them long before the pandemic. There is no more important part of medicine than the staff who listens, who advocates, and who checks in. Early in my mom’s care, the most important people weren’t her doctor or surgeon. They were important, but the people who helped her cope and manage were a physician’s assistant and her nurse who helped make sure she could get the right medications to deal with side effects, talk through things she didn’t expect, answer questions, and most importantly, listen when she called them worried about something that was going on.

Shortly after my son was born, he wouldn’t stop crying. He would start at 10 am and go until 10 pm. We couldn’t figure out what was wrong. It was a nurse who said, we will figure this out, and he and you will be ok. She called me every day to see how I was doing and check in on him. Ultimately, she became an advocate for us when we were far too exhausted to know what to do. My son thrives because of her.

We need to make it so people get full scholarships to pursue nursing degrees. We need ten times the number of nurses we have now, and we need to pay them. We need to have everyone from nursing assistants to physician’s assistants. We need to have them visit people where they live and provide care in a range of environments. If we are willing to invest, we will strengthen the healthcare system, but most importantly, we will improve our lives and our quality of life. We know having early visits after a birth can improve outcomes for babies. Visiting nurses can improve outcomes following surgeries and other hospital stays. Nurses can help to empower and inform patients so they can figure out what they want and need to have good lives.

Nurses can lead us out of the pandemic if we invest and support them.

What is normal

For months, I thought that when my son was vaccinated, things would feel more normal. The same week, stories of omicron were showing up. It feels like normal has shifted again.

Learning to live with the unknown is becoming normal but it is really hard. My son has nightmares. He’s had them for over a year. I shouldn’t be surprised. I had nightmares at his age, and I wasn’t living in a pandemic. But, it means that for the last 18 months or so, I sleep in 4 hour chunks. I was never a good copy editor, but I am terrible now. I miss details easily, and even big things. I use every AI tool I can find when I am editing to help highlight things that need focus.

I wonder if we’ll ever place an order for lab again without having a two month wait (and that is when things don’t simply say backordered without a date.)

I see so many of my students in lab and in class struggling. They are brilliant but there are all sorts of new challenges for so many of them.

Somehow, though, in spite of all of this, in spite of being worried, tired, and, at times, sick, everyone is moving forward and finding a way. Graduation has always felt like Christmas, but this year, it feels more like Christmas than ever before. To complete a degree, especially a PhD in a pandemic, is absolutely phenomenal.

I don’t know what the future will bring, but I am beyond grateful for the students. They are incredible.

Nature, Science, and Having to Say Goodbye

One of my really amazing students, Dr. Nuzhat Maisha, graduated recently. She is one of the most careful, hardworking scientists I have had the privilege of collaborating with over the past five years. She’s moving this weekend to Boston to start working at a company, and they are incredibly lucky to have her.

We met today via video to go over the revisions for two of her manuscripts. She was surrounded by boxes, and I was home at my small desk on the porch. As we were talking about the role one of the polymer components played, I yelled and fell down. There was a wasp around my desk.

I am not a nature person. I love nature, but I’m most comfortable when nature and I can be at a respectful distance. Nature, I think, feels the same way. When I ran into a bear in the Catskills, both of us were delighted to keep moving on. I was terrified. The bear mostly seems annoyed that the eggplant in running shoes was singing to deter it.

Once I stopped screaming, and I really hope Nuzhat had pressed the mute button, I obtained the swatter. I had no intention of swatting the wasp. It is a mud dauber, and they are very beneficial insects, but I needed to deter it until I had a plan. We carried out the rest of the conversation periodically interrupted by screaming and deterrent-swatting and science.

I hate saying goodbye, especially to brilliant, wonderful colleagues. I miss her already. I’m sad that our last meeting involved screaming and wasps, but I am so grateful for the last five years, and I’m so grateful that when I’m losing it, I get to work with a brilliant colleague who finds the humor (and mute button, I hope) in the unexpected things that happen. It is what makes science and collaboration amazing.

Space for Creativity

All of the most creative ideas and approaches I have had came from being in places where I felt supported. I’m far from alone. People are more creative when they feel a sense of belonging. Why, then, have we been so slow to work towards creating inclusion and belonging in science and engineering?

My best students and colleagues were rarely the ones who made perfect scores and grades. They are often the ones who find a space where they feel like they fit and are welcomed. I think about the times I have navigated challenging environments in science, and in those times, I feel like I’ll never have another good idea. But, when those environments change, the ideas come flooding back. It is incredibly difficult to be creative when one worries is one’s colleagues will harass one, one’s students, or seek to make life difficult. One focuses more on survival than on what might be possible.

If we value science and engineering and innovation, we owe it to ourselves and our colleagues to dismantle the systems that make harassment and prejudice not only so easy in academia but so common. We owe it to ourselves and to our colleagues who have to work twice as hard to even be considered acceptable when, if we didn’t constantly judge and downgrade their performance, they would have the space to be transformational. We owe it to our fields and to the possibilities they hold. It is the right thing to do and it is the smart thing to do. Creating spaces that allow people to thrive creates better science and more possibilities.

Blending into the wallpaper

I read the Yellow Wallpaper in college and had nightmares for months about her decent into madness. But, life moves on, and with a love of science and much less love for having a boss, academia seemed like a good avenue. (It didn’t hurt that my advisor, who is truly a mensch of a human being encouraged me at every turn.)

One of the artifacts of being a woman in science is that I am often not heard. I have lost count of the number of times I have said something only to hear it reflected and discussed by my male colleagues as if they have conceived of the idea and brought it to fruition themselves. But I am not just unheard. I am often overlooked and unseen. Because of this, I have been privy to discussions that still leave me dumbfounded.

I have heard faculty blithely exclaim that people of a particular race are just not as good at science. I have heard the musing as to why this must be, but I have been flabbergasted when the same people think it is odd that I ask. When did I get there and why would I ask. Because it is wrong, a flawed premise, if one feels better ensconcing racism in the trappings of delicate language. There is nothing delicate about it. I have heard faculty blithely note that women really struggle as faculty. Again, there is shock when I exclaim whether they have lost their minds. They kindly assure me they are not talking about me. No, no.

The structures of academia are deeply well suited to maintaining heterosexual male white supremacy. The decisions are made by the same people who exclude others during hiring and promotion. Just the thought that one might have to write about how one contributes to diversity, equity, and inclusion at the time of hiring, much less during promotion is dangerous– apparently distracting from the merit of work.

There is little merit in work that propagates the colonial view that science is separate from society. Science is done by people about the world and universe around it. It is phenomenal and fantastic, and it is best when it includes both diverse people and perspectives. When a small group alone are the ones privileged to ask the questions, the work is just as small and misplaced. I watched a colleague for years develop drug delivery systems for the vagina that were too large to fit in the vaginas of the animal models. It was disconcerting and unethical for the animals. It was also just stupid, because the dosing wasn’t going to improve as the technology was translated. Another approach was needed, and if the work had been done in a way that his group members felt they could be heard, it would have been done better.

Science is the most empowering, transformational experience I have ever had. Getting to try to understand why, and getting to apply that to, hopefully, make things better… who wouldn’t want to be part of that? And they should be part of it. All of us are needed to unpack and apply understanding. We have incredible challenges right here, right now, and instead of deciding who belongs, we should be working on how to include everyone. I have watched more students who were deemed borderline flourish when they were supported and encouraged. Not every person has to want to do science, but everyone should have the opportunity and be supported, not just because they made it through a gateway but because we all will be better for their perspectives, questions, and insights.

I have blended into the wallpaper too often. It is maddening, and it is is scary to step away from it and call out the insanity of small minded people. I am deeply difficult for them, but as I speak, there is freedom, and I hope, over time, the crumbling of the fortifications of the tower. We all belong, and we are all essential to the enterprise.