We’re Not in Kansas Anymore

In the Wizard of Oz, as Dorothy’s world changes from black and white to technicolor, she turns to Toto and says, “I’ve a feeling we’re not in Kansas anymore.” From the moment we lost Talia, our world did the opposite, changing from technicolor to black and white. We understood we weren’t in Kansas anymore either. Just like that we were in an unfamiliar place that we could never have imagined, a nightmare that altered our lives forever. We have worked hard to rebuild life in and around the absence of Talia, to make our way in the world with meaning and intention, with joy and connection—and we’ve done a pretty good job of it; but unlike Dorothy, we’ll never wake up and find that we are truly home again. 

That being said, we did set foot for the first time in the literal Kansas in September. We traveled to Kansas City (Kansas and Missouri!) and made four presentations in two days. Now, I admit it was I (Naomi) who agreed to this daunting schedule when Terry Rosell proposed three additional speaking opportunities in addition to the Flanigan Lecture, which he coordinates through his position at the Center for Practical Bioethics. Jeff is more practical than I am, and understood from the outset the emotional toll it would take for us to prepare our talks, and then share in detail about Talia’s life, hospitalization and death four times in two days. (You’ll gain a better understanding of that, too, if you choose to watch the video link we’re posting at the end of this newsletter.) But I couldn’t pass the chance up, because it meant we could engage with a range of groups that included medical students, family medicine residents, internists and other hospital workers, and finally, medical ethicists. 

What we didn’t realize is how integrated this set of four lectures would feel; how lucky it seemed to get to join the whole of the medical community in Kansas City, how talking about Talia’s experiences and death could reach members from all parts of the broader medical community. Where various members knew each other already, we acted as a connecting point for them at a time when, post-Covid, in-person connection is still not necessarily a given. But then we also got to make connections ourselves, in myriad ways. For example, the whole reason we ended up in Kansas City is that a medical student heard us speak at the American Society for Bioethics and Humanities (ASBH) in Pittsburgh in 2019. She suggested to her bioethics mentor, Terry Rosell (who was teaching bioethics at the medical school in Kansas City at the time) that he bring us out to speak to medical students there. He tried! But Covid hit and we couldn’t go in 2020, 2021, or 2022. By 2023, we’d stayed in contact with Terry for so long that we’d become friends. And, by the time we finally made it out to Kansas last month, the medical student who had originally recommended us to Terry was now a doctor herself—a Family Medicine Resident at the KCU Hospital. Terry arranged for us to meet with her group of residents where we also got to “meet” Sierra again. 

A retired speech pathologist watched us online when we delivered the Bartholome Lecture at Grand Ethics Rounds at KCU Hospital on a Wednesday (all presentations were hybrid, delivered both live and online, a technological feat—mosty), then joined her husband, a medical ethicist, on Thursday to hear us “live.” She came up to tell me afterward that she planned to use our presentation as part of a new curriculum designed to teach speech pathology students at KCU how to speak up when they know something is wrong, and she’d already made arrangements with her colleague at the hospital to arrange this. And her husband had some great fundraising ideas for the research we are sponsoring!

One of the 2nd year medical students wrote to us after our visit to his Bioethics Class and it looks like he will be joining a committee we serve on at the Collaborative for Accountability and Improvement. A risk manager at the hospital who works with one of our closest allies in the patient safety world came to hear our talk, then had a conference call that included us the following week. So it went as we made the rounds in Kansas City.

But by far the most touching, and perhaps the spookiest connection we made was with Lindsay, a woman who sat in the front row at the Flanigan Lecture, paid close attention while we spoke, asked an astute question in the Q&A, and then went up to Jeff when it was all over with a story of her own. As background, it’s helpful to know that when we tell about Talia’s experience, we always arrive at the point where we demonstrate how abandoned we were by Talia’s medical team such that we were all seeking information and help from people outside the hospital because we weren’t getting any help for Talia from those inside the hospital. In this strange moment right before Talia’s airway occluded, Jeff was on the phone with a doctor friend, I was trying to reach my cousin who is a pulmonologist, and Talia was online with her EDS neck group to see if anyone had experienced the kind of difficulty breathing she was having. In fact, Talia wrote to that group that she was afraid she was going to die. Well, Lindsay relayed to Jeff after our lecture that she had been online in that neck group when Talia wrote in for help. What??? Yeah, Lindsay—who had the same surgery Talia did—was there on the other end of that computer when Talia was an hour away from losing her life. And here she was now, almost 10 years later, hearing us tell the full story of what happened to Talia in Kansas City of all places. (In a weird way, I guess Kansas City did bring us “home” to Talia for a minute.)

I think after hearing all four of our talks, Terry—to whom we are so grateful for his kind care while hosting us—understood just what he’d asked of us. And while it was exhausting and grueling going through it this way, we came home deeply satisfied.

We know that, while you support Talia’s Voice, you mostly don’t get to see what some of the work we do actually looks like. So we want to share with you the link to our 2023 Flanigan Lecture presentation. If you choose to watch it (and we hope you will), we encourage you to view it in one sitting (with your phone turned off!). As Jeremy, the cinematographer noted, the slides are like the musical accompaniment to our story (that’s an analogy only—they have no music on them). The point is that it is a visual and auditory experience at once, and there is a definite narrative arc that you might miss if you watch it in chunks rather than all at once. 

As fall slips into winter, we’re wishing you moments of peace as we are faced with a world currently riddled with conflict, death, strife, and war. We know that people everywhere are also struggling with horrific losses, and we know too well how painful their futures will be. The ghoulishness of the season is feeling a little too real.

Nevertheless, we’re wishing you a fun, spirited, and happy halloween.

Naomi and Jeff


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