The Word I Wasn’t Ready For

Storytelling, science and a community event

I am very aware of the ACIP news dropping this week and I have covered it with collaborators here. And on my own on instagram here and here. I want to talk about something different today though - science and storytelling. I held an event this week that gave me so much joy and hope. Which was greatly needed in this rough week.

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The Power of Stories

Science is everywhere and is touching all of us in ways that are seen and unseen. But to most people it often feels distant, intimidating or not relevant. Storytelling is one of the keys to changing that.

When we share science through stories it makes the science we want others to care about and understand relatable. A carefully thought out story can help people understand complex ideas and help them stick in our minds long after the actual facts and figures mentioned in the story fade away. In fact, studies show that people find it easier to understand and more engaging to follow a narrative than scientific data explanations alone.

Stories help us spark curiosity and empathy. They help us open hearts and minds in a way science facts alone can’t. This is why I’m so passionate and working so hard to bring storytelling into science communication and education (and I know I am not the only one). Many of us believe it is one of the most powerful tools we have to shift perspectives and build connection and community with people.

This passion is what led me to host the first Taproom Tales event in partnership with a local scientific institution (MDIBL), a brewery (Fogtown Brewing), and our local community radio (WERU).

Science Stories and Community Events

This Taproom Tales event was an evening where six personal stories related to science were told in my local community brewery. I wanted to create a space where people could hear stories that would help them see that science isn’t just something done in a lab, out in the field and in textbooks. But it is a very important part of our everyday lives.

That night, I kicked things off by sharing a deeply personal story of my own – it was an experience that changed me and ultimately led me to being here writing to you. It drove home the point that I hoped to share at Taproom Tales – that science truly lives beyond the lab, woven into our hospitals, our homes, our families, even in the unexpected moments when you hear a word that changes everything. I want to share that story with you below.

My Taproom Tales Story: The Word I Wasn’t Ready For

Below you will find the story shared at the event this week in case you prefer to read it. If you would like to listen to it, I have also included an audio version below.

Note: there was a bit of a snafu at the beginning of recording. So I stitched the beginning on. After the first 1 minute the rest is all live from the event! Luckily, professionals were also recording it so we will convert the full event into a radio show for our local community radio soon. More on that later!

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They tell you becoming a parent will change your life. The long nights. The diapers. The giggles. The first moments. Lots of love. And yes, that is all true. But what no one told me was how much being a parent would really change me.

You see, I thought I knew how this pregnancy would go. I downloaded all of the apps. Read all the books and I listened to all the podcasts. I imagined our future full of moments like holding our baby, their tiny fingers curled around mine and hiking in Acadia National Park. I didn’t think of medical waiting rooms.

At 20 weeks, we had our anatomy scan. We left the appointment grinning, hands full of printouts excited about the future. We thought everything was OK. A few days later, the phone rang.

“There’s a spot on his heart,” they said. “It’s probably nothing. But we have to follow-up.”

That’s when we first heard the word rhabdomyoma.

I’m a scientist. I’ve spent years in a lab studying genes and the ways cells grow. So, when I heard that word, I knew enough to worry. Rhabdomyomas are non-cancerous heart tumors. Sometimes, they’re harmless. But often, they’re linked to a rare genetic condition called tuberous sclerosis complex, also known as TSC. In the darkness of my overwhelm and anxiety I turned to science. So, I read the papers, I fell down the PubMed rabbit hole and joined online parent support groups.

From all of this I learned too much. I found out that TSC happens when the brakes that control how cells grow don’t work. This causes tumors to form in the heart, brain, kidneys. Some people never know they have it. Others can have seizures, developmental delays, heart issues and lifelong care needs.

So, we waited for more appointments and more ultrasounds. 28 weeks came and I was lying on another exam table. Cold gel on my stomach. My husband Isaac holding my hand and giving it three squeezes. Our secret “I love you.” I carefully watched the ultrasound tech’s face for clues. She gave us none. “All set,” she said, handing me a towel. I let the tears fall the moment she left the room. I hated the waiting.

Later that day the phone rang. This time, it was a new doctor. “We think these are really rhabdomyomas,” he said. He then started spouting off information that I barely could understand. There was talk of more testing and monitoring their size. Because if they grew…it could be bad. He might not make it. I was driving during this conversation and I had to pull over. I couldn’t breathe. We were stuck in the land of uncertainty and we just had to wait.

Finally, labor came. During it the only thing I could think about was whether his heart would handle it. But he came out crying. He was loud. He was strong. “He’s definitely an Owen,” we said. We were new parents. We were in love. We were also still waiting.

Owen went on to have so many tests. EEG to look at his brain waves. MRI’s. Kidney scan. All before he was two months old. Most of this was done at Boston Children’s. When we first talked to us they gave us a recording of the MRI sounds. We trained him to sleep through the MRI. We played recordings of clanks and thuds while he napped, in the car, overnight, all the time. It made our house sound like a construction site, and drove me nuts, but it was worth the effort to not put him under anesthesia at 7 weeks old.

Owen getting a brain EEG to look for seizure activity.

Finally, it was time to drive to Boston. When we got to the hospital I wrapped him in a swaddle, fed him and rocked him. I sang him to sleep. Then I kissed his forehead, placed him on the table and watched the MRI machine swallow his tiny body whole. I sat at the foot of the machine in a rocking chair. The MRI pounded as I waited through the longest 30 minutes of my life. I prayed they’d get the images of his brain they needed - they did.

Finally, we got to meet the team. As soon as they walked in, they gave us good news.

“He has no brain tumors. No kidney tumors. EEG looks normal.” There was immediate relief. But also still so much uncertainty. None of this meant that he didn’t have TSC.

So, we moved onto genetic testing. When those results came in, they told us “No known TSC mutations.” But that still didn’t mean he didn’t have TSC. Because science doesn’t know everything and we knew it hadn’t found all errors in the DNA that caused TSC yet.

We were told we had to keep watching and waiting. We had visits with Boston every year until he turned three. And then, finally, we were told he does not have TSC.

Now, Owen is six. He is sitting right over there. He runs, jumps, builds LEGO towers taller than he is. He laughs with no idea how the beginning of his life changed me.

Because even with my scientific training. Even with my access. Even with my education it was all impossibly hard.

So I thought about the parents who didn’t have that.

During this journey I joined support groups. I watched moms begging doctors to listen. I saw people struggle because no one could explain their child’s diagnosis. I saw how wide sometimes the gap is between science and the people who need it most. And it changed me.

Then nine months later, COVID hit. And I started doing something I’d never done before. I started talking about science online and explaining what it meant and why it matters. That led me to eventually leaving my faculty job and focusing most of my time and effort on science education and outreach.

Because science isn’t just in labs or textbooks.

It’s in the ultrasound room. It’s in the oceans nearby. It's the reason Owen learned to fall asleep to an MRI playlist. It’s in the word you never expected to hear that can suddenly change everything.

How did it go and what’s next?

The event went really well with amazing turnout! It filled my heart with hope after a week of challenges. I had a few people tell me they didn’t come for the event, but stayed to listen. I had many people start approaching me on ways they want to start telling their own stories related to science.

We are already discussing the next local event. I also have meetings planned with others who want to do similar things in their communities. I have developed resources as I planned this event with the intention to share them. I am editing them based on trial one and will be sharing more once I have done that. [Edited: The toolkit is now available here!]

Now, I want to recognize that storytelling events are not new. The Moth and Story Collider (science focused) do storytelling events around the country. What I was trying to do fell into these buckets:

1. Have local science story events in places where community already gathers. Because the people who likely need to hear these stories the most won’t buy a ticket for an official science story event. BUT they may be in a local brewery or coffee shop and stumble upon it.

2. Building relationships within communities. The community aspect is also critically important to help build relationships on the ground. This will hopefully help decrease the psychological distance between science, scientists and people. For more on this concept please read this amazing Substack issue from my friend

   Matthew Facciani
   on this concept!

3. Including scientists and non-scientists in telling stories about how science impacts them. Because it’s not just scientists who care and are impacted by science.

4. Including community radio: Our local community radio station was excited to partner, and willing to air it on the radio (date TBD, I will share). This will allow the stories to reach even more people in our community, and they’ll know they’re hearing stories from their neighbors and fellow community members.

If you’re interested in doing a similar event in your communities comment below or reach out. I will also share more here soon!

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