“Wonder”
On June 1st 2023, the Resiliency Center and the Center for Health Ethics, Arts, and Humanities presented the fifth in the series of Healthcare Stories at Kingsbury Hall. This year’s theme was “Wonder.” Stories addressed discovery, questioning, the wonderful things that bring you awe or delight, what stops you in your tracks and causes you to reflect, things that make you say, “I wonder.”
Communities need stories—to tell them and to hear them. This event featured storytellers from across our healthcare community, to include clinicians, patients, family members, staff, faculty, and students. Listen to their stories below.
Special thanks and credits to UtahPresents for the recording, Miguel Mendoza for the photos, and our Master of Ceremonies Kavish Choudhary.
0:00:05.6 Gretchen Case: Hello, we are so glad you joined us today. I'm Gretchen Case, the director of the Center for Health Ethics Arts and Humanities at the University of Utah. Welcome to the fifth iteration of healthcare stories. We'd like to begin tonight with a land acknowledgement. We acknowledge that this land, which is named for the Ute tribe, is the traditional... Chosen from a call for submissions sent out across our communities. They represent many professions and life experiences, and yet they all share a commonality. They're human and have engaged with and been impacted by healthcare. We look forward to this event every year because we know that sharing stories is powerful, both for the storyteller and the listener. Dr. Abraham Verghese, a physician and author at Stanford, says about story stories, our instructions for living. We need stories to better understand ourselves, each other and make sense of the world. We love this year's theme of Wonder. Wonder is a word it's versatile. It's useful and it's meaningful. It can be a noun or a verb and used to describe great beauty and brilliance. It can catalyze the process of curiosity and discovery and it can serve as a balm during hardship and despair.
0:01:32.5 GC: Each storyteller will speak for about 10 minutes. So our total time together this evening, we'll be about 90 minutes with no intermission. So if you need to leave the theater during the show, we would love it if you could time your exit between stories and exits are in the back right behind you on either side. Kavish Choudhary is our master of ceremonies tonight. He will briefly be introducing each storyteller. Kavish was one of last year's storytellers, which you may remember if you were here. And we were so impressed with his performance that we brought him back.
0:02:06.4 Megan: We would like to thank many people who got us here and continue to make this series of events possible. First, all the staff at Utah presents with special thanks to Ashley Behunin and Kevin Meyer, the staff at Accelerate an Online Learning Community at the U. Marketing and Communications at U Health. Kyle Loud and Slager, Miguel Mendoza for photography. Betsy Holm for all her administrative support and supporters of both our centers, leadership from SVP and hospitals and clinics. And with special thanks to Dr. Tom Miller and Dr. Wendy Hobson Rohr, who are supporters of both our centers. We also wanna thank everyone who submitted this year and hope that you will all, all of you consider submitting stories when we put out our call for stories in the fall for our next show, which will be on February 1st, 2024, here in Kingsbury Hall. And the theme will be Promise. Final thank you to everyone and to everyone you will see on stage tonight. And we'll start out with Kavish. Thank you all for coming.
0:03:16.4 Kavish Choudhary: Thank you Megan and thank you Gretchen. Be sure this is here. Thank you for the kind introduction and thank you for putting on such an incredible event. As they mentioned, my name's Kavish Choudhary and last... I'll be your host tonight. Last year I had the opportunity to speak, as they mentioned, and me doing this event last year was a little bit unusual. It wasn't planned at all. Megan and I would typically run into each other at childcare pickups and we would exchange pleasantries and try to corral the kids at the same time. And like a great psychologist, she kind of picked up on something that was going on with me. She'd always ask if I was okay and I respond, yeah, I'm fine. And probably say something stupid like, oh, keeping it real. She saw right through it. Last year as Megan and Gretchen were planning this event.
0:04:03.5 KC: The 2022 storytellers, they had a last minute cancellation after various emails and texts. I confirmed I was able to jump in and help out, but I had no idea what I was gonna be doing. So this has happened the week of the event last year. We find that it actually connected the... The true assignment was until about three hours before the show. And so we connected a few hours before the show and I learned that the other speakers had about six months to prepare. So I had about three hours. I think Megan saw that I could probably wing it and get through it and I think I did okay with that. And for 17 minutes last year, I spoke, for me it was partially telling a story, partially apologizing to my wife and my kids for not being present during the pandemic.
0:04:47.5 KC: And working the long hours. Apologizing to my father for not being mentally present when he was ill and be apologizing to my colleagues at work because I was such a pain to work with during the pandemic. For me, the telling the stories, it was therapy. I just had no idea I needed it. In my rambling, I remember having this moment and if you listen to the recording, you can kind of hear my voice changes 'cause it hits me. 'Cause again, remember winging it, had this realization what was actually important in life. It wasn't the work, it wasn't the patience per se, it was my family, my wife, Amanda, my kids Madden and Ramitha. Without them, nothing else really matters. And I remember walking away that night trying to find some balance again. And being in that event kind of helped me remind myself what my priorities were actually needed to be.
0:05:39.3 KC: I think when Megan saw me in the daycare drop off or the daycare pickup, she saw that I needed outlet. I also know that Megan and Gretchen are likely to regret inviting me up here this year. Scripted and planned 'cause I think I do better when I'm winging it. So, moving out to tonight's show, we have eight phenomenal storytellers who can talk about wonder. These eight brave people have incredible stories. For some this may be their moment of therapy, a chance to be heard and validate their experience that are real and that they matter. For some, this may be an opportunity to challenge themselves and do something that they normally would not do for others. And maybe the opportunity to share something they wouldn't normally share. Tonight, let's listen to these storytellers. Let's laugh with them, cry with them, feel for them. Applaud them for being authentic and being brave enough to be up here on stage.
0:06:31.5 KC: I will introduce the speakers throughout the night you have their bios in the program. In preparation for tonight, we ask the speakers to provide me with information about themselves that's not in the bios. So, specifically we asked them what actor or actress would you play in a movie and what kind of movie genre would that be? So tonight our first speaker is Perry Montoya. As Perry's bio says, he has a passion for sparking interest in others for the thrill of experiencing goodness. When we asked Perry what he would like to what kind of a actor he wanna play him in a movie, he said, Manny Patinkin from the Princess Bride, Indigo Montoya. And I think it's an incredible actor. He was joking about, he would love to have Mandy Patinkin long hair and athletic build from the... On the movie when it came out in the Princess Bride in the early '80s. And of course he said this movie would be a tragic comedy in some sorts. So I'd like to introduce Perry and as I say that, to quote the Princess Bride or paraphrase the Princess Bride, Wonder is what brings us here today.
[applause]
0:07:47.4 Perry Montoya: Good evening and thank you for coming to share with us this evening, me and seven other fellow storytellers. My name is Perry Montoya and this is my story. It's long been believed that all salmon after being hatched will leave this place of their birth and upon an epic journey, work their way down streams and rivers to the ocean. It's also been long believed that they only return to that very spot once and only once to ultimately spawn and then lay down their lives and die in that very location. Though rare there is a fish, a salmon that actually makes that journey back and forward again and again and again from the ocean back to the headwaters. That salmon is known as a kilt. Salmon, perhaps are very intrigued and and interested in those waterways because yes, it's the place of their origin, but also surely they have to do determine that the chances for their offspring to have a fighting chance will be better if they can go back to where they began as well.
0:08:53.5 PM: I've lived in 40 homes in 52 years of life and yet each time I keep coming back to this location... And I'll share with you throughout my story, this very location. I'm the first of, sorry, I'm the fourth of four children. I believe my siblings may be in the audience with us tonight. My father was a Navy man and our first home after I was born in LDS hospital Fort Douglas, about 1000 yards from where we now gather tonight. And so this being my home waters, my headwaters, if you will, four or five times during my lifetime. I've been brought back to these my headwaters in my personal and professional life. And I can't help but wonder why, what imprint upon my soul is bringing me back to this location. My parents, as I mentioned, my father in the Navy, my mom ultimately a travel agent, that meant that we were somewhat the livestock and they were the nomads, right?
0:09:48.5 PM: Maybe not so much, but we did gain their wanderlust. And so I've traveled the world over as a tour guide, as a travel writer, and I love people and places from all over the world. And truly those who know me would know I'd be happy to live in any one of those locations. So why here? Why now? Why am I brought back to this place my headwaters? Maybe if I take you back a little ways. In the early '80s, after having made some moves indeed, previous to that my family had moved to ironically the ocean, Washington State, Southern California, Northern California. I spent time in Texas, each of those, very near the ocean. After having made those travels in my early professional life in 19... Well, actually before that, in my young life in the 1980s, I came back to this very campus time and time again as a young debater who at that time would come to the library that's not very far from here.
0:10:44.5 PM: I can still smell the books, I can still see the microfilm. Sorry, that makes me old. I know, but I can work through those and I can remember that this campus hold a place in my heart. So was I supposed to come back to these headwaters for all things academic, for me, for my own knowledge and learning? No, in the early 1990s, I found myself in a career, as a medical and marketing and sales individual that brought me back to this campus yet again because the University of Utah Healthcare System was my predominant client, so was I brought back for all things success and finance after all, as a young 20 something, I'd made some money here and maybe money was the reason why I was supposed to come back here. Maybe success. It didn't take long for me to realize that wasn't the case.
0:11:31.6 PM: At some point I tired of the business world or probably more so of insurance companies and contracts, if you know you know, right? And in the late '90s I determined it was time to move forward, to do something different. Not very far from here on a side stream, if you will. Westminster College was the place where I'd get my undergrad degree and then pursue religious education as a career leaving the business world. The best place for that to happen was here on the south end of campus at the Salt Lake Institute of Religion. And so some 26 years ago I entered their doors and became a teacher. They hired me. Upon being hired, I dove back into, if you will, another yet deep ocean of academia and learning. And I pursued a master's degree. Where would be the right place for me to land?
0:12:21.5 PM: You can guess here at the University of Utah for a master's in education. Interestingly enough, I accepted my degree on this stage in about 10 minutes. Not 10 minutes, 10 steps from where I now stand. I was asked to be the student speaker for graduation where I said the student first and always, which I still believe by the way, in my professional life. So was my return to this location to be for all things educational? Was it supposed to be the message of that education at all costs? It seems like recently things have been speeding up in my returns. Indeed about a year ago, my wife and I were asked to come here and to help be administrators and teachers for an inaugural youth conference for spiritual learning for 14 to 18 year olds held on this campus and in many campuses throughout the world.
0:13:14.5 PM: Not long after that I was asked also to return back to this campus and at the same place that actually gave me a job, the Salt Lake Institute of Religion to return and now teach the older age kids, the college age kids and have an experience with them. So is my return to these my headwaters for all things educational, for an opportunity to to continue to move forward and now in a spiritual education versus the educational side I mentioned of just having been a teacher, within one week after being given and accepted the position to come here and teach. I was diagnosed with a serious illness. Remember, kilts are rare. My rare illness is known as Sarcoidosis. Given the job on November 29th, diagnosed on December 1st. I'll spare you all the details that you might not wanna know about Sarcoidosis, like the medical dictionary version or maybe the CPT codes are in what the insurances will pay for.
0:14:19.5 PM: But I will tell you what it means to me. What Sarcoidosis has meant for me is I stand before you with innumerable nodules in my lungs mimicking cancer, but not cancer. I stand before you with those same nodules in my lymph nodes and in other locations in my body that I'm uncertain of right now. What does that even look like? I stand before you wondering, having questions that are unanswered. I stand before you with what it means to me of in those unanswered questions. Even some physicians one saying to me, Hey, sorry, it's not cancer. 'Cause the money really goes there for research. And so it'd be better maybe if it were that, you can laugh at that. I thought it was laughable. I thought how in the world, right? It means for me untold numbers of people that have given so much to me and my family of time and efforts and finance and in so many ways reaching out to us and knowing I can never repay.
0:15:20.5 PM: And also knowing that it's impossible to answer to those people. The simple question, how are you doing today? 'Cause some days it's just the same as it's always been for the last six months. Other days the symptoms are flaring and it's too much to explain which one and why. Some days it's good, and if I say it's good, then what happens the next day of what I thought you were good. What Sarcoidosis has meant to me is that in the seeking of answers to questions, I can't just go to any doctor because of the rarity. I'm being referred to referrals by referrals at this point, indeed in the next couple of weeks, in some weird form of excitement, I'm getting excited to go to a national hospital in two weeks to try and get some answers. That's a stream I didn't know I was going to swim down nor be excited to swim down. Sarcoidosis is also meant for me a love and a trust and a care for people. I've lacked in some ways what some of us are pretty well used to. If you have back pain, someone says, oh, my mom had back pain and she or they say, well, when I had back pain, I took, I don't have those abilities right now because it's something that most folks don't know a lot about.
0:16:38.3 PM: The irony in all of it and what halts the isolation in my swim, if you will, it's you, it's that we're here tonight together because I know you've swam a solo swim before. Yours is different than mine. But me having shared mine tonight in some way unites us together and we're swimming together in the process. While I don't know entirely what's next, while I can't answer the question of why the swim, why the return to this location over and over again, even on this stage at this moment, what I can say is this, I am enjoying the experience of knowing you're swimming your swim as well. Maybe in closing the thought of this, if the answers aren't to be found quickly, then where might it find answers to my story? Maybe like you, I look to those that I've swam with for as long as I've swam. My sweet wife, endured... Our 30th anniversary was the day that I was diagnosed.
0:17:44.5 PM: So she's endured that in many other things and has noticeably rocked. My children have experienced this in a hard way and their spouses and significant others, but they've also seen me vital and strong like you see me tonight and I wanna feel that way in my life. I wanna be who I need to be. But I also know that salmon swim back to headwaters for their offspring. So I consulted the offspring and gave them a little version of my story and here were their responses. My youngest son said, who by the way, currently is in his far away ocean location of London and has been throughout this entire spot, serving a mission for his God returning home this month. Here's what the youngest said. He said, "Dad, you lose the wonder if you just continue in wonder."
0:18:32.5 PM: Sweetly, my oldest daughter said the words, "Dad, perhaps it's in your story, the why we are here for all of us and we need to learn." And I believe she's right. I've never felt to lay down in the ocean and die there nor pursuit of the headwaters and never return back to the ocean. I want to go back and forth and back and forth. Perhaps the hardest one came from my middle son, because it was a compliment and those are hard to take. Who said, I'm grateful that my dad's not swimming some one last crazy swim as fast as he can trying to get things done. His life has been the swim that he was meant to swim. I don't know the answers, I don't need to know all of them, but I do know that the experience of being with you, with friends, with family, with seven other gifted individuals who I hope you'll listen to tonight and be a changed person from listening to them, I am from having done so. It's the journey that's truly mattered. So while I can't give those answers, I will say to you from one kilt to the next, enjoy the journey. Thank you.
[applause]
0:20:01.4 KC: Thank you Perry. That was incredible. Thank you for reminding us to remember the journey. Our next speaker is Michelle Brown. Michelle's bio mentioned that she... Her favorite perspective is, yesterday does not define your tomorrow. Interesting tidbit about Michelle is that she makes handbags. She's a fashion designer. And as we were chatting other night, she mentioned she makes a high end handbag. So pretty impressive. And when I asked her what she would do or what kind of movie she she'd be in and what actress would play her, she mentioned Anna Wintour for Mission Impossible. Now, I didn't clarify which mission impossible, but maybe we can spend the next 15 minutes to find out which one she wants to be. Michelle, come on up.
[applause]
0:20:51.3 Michelle Brown: I haven't watched all the Mission Impossible movies, but I was like, my job is kind of like mission impossible. So I think it would be kind of interesting. So I did see the last one though. I am gonna tell you a birth story, but the first thing that I want you to know about me is that I love my only child and I have absolutely no regrets whatsoever. So as someone who designs for a living as a fashion designer, it only made sense for me to design my own personal preservation plan before my child and I met. So I had been seven years into my marriage and living in New York City with roommates when I found out that my ovaries worked. And I was really surprised, I was very shocked to find out that I was pregnant. And I know that sounds a little bit complicated and you know, it kind of was because my husband was living here in Utah and we would... He was actually going to university here, and we'd go back and forth and visit each other every so often.
0:22:09.5 MB: But ultimately I refused to leave my New York career. And if there's anything that working in corporate fashion in New York City taught me, it was that the first design of my self preservation plan was going to be my silence. I know it's so sad that I had to come to that conclusion, but that was the circumstance that I was in. So looking back into it, I did not know how to really move forward in this situation that I had ended up in. And I was happy about it, but I also knew I had to be smart about it too in the position I was in. So what I ended up doing was, figuring out a way that I could really keep a good head on my shoulders and still like be really good at what I do, but all under the radar. So my pregnancy was going to be on a need-to-know basis and my employer did not need to know.
0:23:20.5 MB: So I marked down five months on my calendar where my pregnancy just needed to be completely undetected. And my goodness, did it pay off? Because let me tell you that when my employer found out that I was expecting, my boss, who was a woman at the time, unfortunately took the opportunity to completely berate me personally, attack me about how little I must care about my career. And it's almost as if I saw that coming the entire time, which is completely why I concealed it. But alas, my self-preservation plan, the corporate edition was an ultimate success.
0:24:06.0 MB: So after I left New York and came here in Utah, I was probably about six months along at that point and no longer working, but I remember just it dawning on me. I had just been so used to concealing every aspect of my pregnancy mentally that I was like, oh my gosh, I'm pregnant and there's a baby who's going to be coming really soon. And so even though my mind had not caught up with my body, I was like, okay, this is really happening. So as a designer, what we do is we'll design with the materials provided to us. And so I quickly found out that I would not be designing with health insurance or a traditional hospital because every place that I would call could not give me a quote on how much this whole birthing a human thing costs. And that was really confusing and surprising to me at the same time.
0:25:10.3 MB: So I was trying to get creative with what I was going to do, and I thought back to all of my prenatal health checkups in New York and all of my examinations, and each time I came back with a really clean bill of health. So I was like, okay, well what if... I mean, there's this whole like thing for at home births or birthing centers, maybe I should try that. Maybe I should figure that out because they would quote me what the costs would be. And so I decided to move forward in that direction and ultimately chose a birthing center out in Lehigh. And so I'm probably about a month along at this point, and I'm really just starting to worry about like my whole plan to begin with and just how I'm going to proceed. And so thinking about it, as a Navajo woman, I know that American Indian and Alaska native women are two times more likely to die as a result of pregnancy related causes.
0:26:14.9 MB: So that really started to freak me out. And that statistic is based in comparison to white women and my grandmother who, I never met, had actually died on the Navajo reservation during childbirth. So this to me was not just another statistic, this was my family history. And so I became more concerned about making sure that all of my records were in one binder and my home, and that my house was in order in the event that I would not be making it back. And so there was no me like purchasing, like child stuff. I think I was delaying a lot of things, almost refusing to recognize this is really still happening. And I was really lucky that I actually bought a car seat three days before my child was born. So luckily I got that down. And I just remember laughing so hard to myself at 4:00 in the morning the day after Labor Day because my water had broken, and I had this running joke that it would be so hilarious if I were to go into labor on Labor Day, and I was only wrong by four hours.
0:27:41.7 MB: And technically it was like two weeks early, which that's why it was a joke. It wasn't supposed to happen. So that was really hilarious. But I will say that it is remarkable what it felt like and what I went through to give birth to a human. And I mean that in the most painful way possible. Yep. I felt everything. So, it was really interesting to see that my instinct and my personality was intact the entire time down to when my son finally made his way out. And the nurse hands him to me with congratulations. And I just grabbed him and handed him to his dad because I was not anywhere near, physically or mentally ready to meet this new human. I, from my research, knew there was still so much that had to happen. I knew that this was just the first birth and technically I would have to be assisted in birthing my placenta. And of course, every human's nightmare and designer, a tear. And we're not talking about fabric here. Yes, it happens. So as I watched the nurse thread the needle in true fashion, I just stopped her. And I just thought, okay, I'm totally at her mercy, but I have to ask her, what is your experience with sewing?
[laughter]
0:29:24.4 MB: And she responded back that she had experience with quilting to which I was pretty satisfied because if the women who quilts, they know how to put a pattern back together. So after that portion was like done, I felt ready to meet my son, who was very quietly waiting with his dad. And I remember there was just like no tears. There were no like dramatics. It was just, I looked at him with just complete wonder and it was mostly like, wow, what the heck just happened? It was nothing like what I had expected. You see, I had this really romanticized idea of what this moment would be like and this romanticized idea of what it would mean in this moment to be a mother who just gave birth. And I realized that leading up to all of this, it was not at all what I had been told it would be like, or how it would feel like.
0:30:41.8 MB: And I think that was some of the most amazing, teaching moments that I had in that time of just like, everything dawning on me of like, oh, it unfolded this way, but you know what, that's okay. And so from there, I started to think a little bit deeper about all of what I had gone through, leading up to this. And I realized that I also just did not... I did not plan for this part of my, like, self preservation, like this whole part. And in those moments, looking at him, I acknowledged that this was some of the hardest, moments of my life that I had gone through. And it was mentally taxing. It was some of the most lonely times that I ever had in my life. And it left me feeling more empty than full looking back at it.
0:31:45.8 MB: But I am so grateful that I allowed myself to even just feel that without assigning it any kind of like guilt or shame that I just allowed myself to go through that and not feel bad about it the way that it unfolded. And I feel like even though my birth story was a very un romanticized version, this despite what I had been told by society or my previous religion or anything like that, that it was okay. And that ultimately I learned that, motherhood is wonderful, although I don't think it was completely my destiny, and though it happened, I'm still a mom. I'm still navigating this thing called parenthood. And ultimately I found that my worth and my worth is just not defined by my ability to procreate or not. It comes in so many different, ways. And I noticed that my worth is really more defined by my collective choices in life ultimately. And I was really just happy and proud about that. And it was such a wild ride. Even though it was all difficult, I feel it was ultimately a success even though I came from it at a completely different angle than what I was expecting. And I love my son and I'm really grateful for him and for all that I had learned from this experience. However, I will not be doing that again.
[laughter]
0:33:26.8 MB: Thank you.
[applause]
0:33:40.8 KC: Thank you, Michelle, for sharing your story. I wonder what would have happened if you had not shown up to the hospital without a car seat. I'm glad you at least got that. Our next speaker is Liz McLaughlin. I've had the pleasure of working with Liz for a long time at University Hospital. For the longest time she was a nurse in the SICU or the Surgical Intensive Care Unit. When I first got to the U she schooled me on how things were done. She's a phenomenal nurse, phenomenal leader, and somebody that, I would have care for anybody I cared about. She also has a bit of a sharp tongue and we've had our battles over the years, but, I'm thrilled to have her come up here tonight and speak. When we asked a question about who would play her in a movie and what kind of movie it would be right off the bat, she says, Melissa McCarthy R rated comedy movie. And I think that is a perfect segue for Liz.
0:34:44.5 Liz McLaughlin: So I started my nursing career in the surgical ICU, and I knew from second semester in nursing school that SICU is where I wanted to work. I fell in love with how fast paced it was, that it was protocol based and I could use my critical thinking skills. And I loved that we made the impossible possible. It's pretty incredible the things we do at the bedside to keep people alive. Things like opening bellies, opening chests, even dry icing, a patient's leg. I could stand up here for hours telling you stories about the life of an ICU nurse, but they only gave me 10 minutes. So I decided I was gonna let you in on a little secret. There is a haunted room in SICU, things that can't be explained, like call lights going off when there isn't a patient in the room. Now, I'm not here to discuss if ghosts are real or not, but what I can tell you is that ghost stories are real.
0:35:56.0 LM: Excuse me. I wanted to share with you a few ghost stories, real life ghost stories that happened to me when I was a bedside nurse. My first ghost story is a patient that we admitted who had an internal defibrillator. He had a history of v-fib, and the defibrillator would shock him out of this unsurvivable rhythm. However, on this day, he was going back into this rhythm, and so he was being shocked over and over. The medical team told him what his options were, what the treatments could be, and he decided that he had lived a long life at 96 years old and that he just wanted to turn off his defibrillator and go happily with his family around. So his family and his cute 86 year old girlfriend comes to the hospital and they had a party in his room. They really celebrated his life.
0:36:53.7 LM: They told stories, they laughed. They had non virgin drinks. His girlfriend even crawled into bed and snuggled with him. When the party was over, the team came in and we told him that we were gonna turn off the defibrillator, though he would stay in this unsurvivable rhythm and eventually pass away. After he flatlined and the doctor declared him dead, we gave family their time to say their goodbyes, and when they were done, they were gathering up their things and the patient opens his eyes and he says, is this heaven? And then he sees the nurse and says, you said I was supposed to die. We were shocked. He came back with a heart rate of 20 with a very low blood pressure. For those that don't know, people don't survive with a heart rate of 20 and a low blood pressure. But this patient did.
0:37:49.9 LM: He actually survived for two more days before he passed away. My ghost story number two is a young trauma patient that we admitted he was in a really bad car accident and he had a pretty significant code. We did chest compressions on him for a long time, and there was actually a period of time though we could not oxygenate him. He had turned as blue as our scrubs. The team even questioned if we should keep going because we knew the longer we went, the worse outcomes that he would have due to not having oxygen to his brain. But we decided he was young and we needed to do everything we could. And we did. We resuscitated him and stabilized him. Now, he was on full life support, and we realized that our worst fear came true. He was not responding to any stimulus, including pain.
0:38:45.7 LM: He did have a pretty bad brain injury from not having oxygen to his brain. So four days later, we were shocked when we heard knocking coming from his room. We walk in now he has a breathing tube in so he can't talk and he's restrained, but he had been knocking on his bedside rail and he gestured that he wanted to write. We gave him a clipboard and a piece of paper, and he wrote down, I saw my dad. We kind of brushed that off and said, okay, yeah, but you were in this terrible car accident. You're in the ICU. And we eventually get that breathing tube out and he points to the doctor and he says, you were the one that said I was gonna be toast, which is exactly what the doctor had said during the code. The patient went on to tell us that he had this entire out of body experience.
0:39:38.0 LM: He said that he was above his body during the code, and he told us everything that happened. Then he said he was sucked into the waiting room where he saw his wife and grieving kids. And then he saw his dad over in the corner, and he said he was so excited to see his dad because he had passed away years before he went over to give his dad a hug. And his dad stopped him and he said, no, it is not your time yet. You have to go back. At which time he said he was back in his room and he got back into his body. I wanna introduce you to my third ghost story. It was a night shift. I admitted a patient into room four. Now, to protect their privacy, I have changed their names. So we'll call this patient D, I get him set up on the monitors, we get him kind of tucked in for the night, and I'm out at the nurse's station with some fellow coworkers, and I hear mumbling coming from the room.
0:40:39.9 LM: And I walk in and I say, D, what are you doing? Who are you talking to? And he points to the wall and he says, I'm talking to Roy Smith. Now D and I are the only people in this room, and I feel the hairs on my arms and the back of my neck stand straight up because Roy Smith, the person that D is talking to, was the patient who had passed away in that room hours before we admitted D. I walked out of the room and I told my coworkers, you are never gonna believe what happened. Now, I can't explain what happened during these ghost stories that I've shared with you, but I know they've happened and they sure make me wonder. Thank you.
[applause]
0:41:42.2 KC: Thank you. Liz. That was wonderful. And actually a Melissa McCarthy movie does work out well. There you have, Ghostbusters, the version that came out a couple years ago. So not the first one or the second one, the one that came out like three or four years ago. Our our next speaker, Katty Youd, is a daughter of Peruvian immigrants. So I'm a son of Indian immigrants, so we have some commonality with that. She mentioned that in a movie about her life, she would actually want Daniel Day Lewis to play her in her road trip movie, and they would be driving a red minivan. I laugh thinking about this because that's my childhood in which we would hop in the beige minivan to go drive and see other Indian immigrant families across the US. So I'm wondering if that's something similar that we have in common. But without further ado, Katty.
0:42:42.8 Katty Youd: Hello everyone. Hi, my name is Katty and I have Dermatomyositis. Can everybody say that with me please? Dermatomyositis. I know, I know. It's a struggle and it's also a struggle to go through. This is my story. In May of 2015, I went on a run with my brother, and afterwards my arm started to hurt and so did my thighs. I actually had an event to go to the next day, and I had to cancel it because I was very sore and I was tired. And as the days went on, weeks went on, it started to hurt. I was more fatigued. I couldn't really get outta bed. It started to become a herculean effort to go from my parked car to my university classes.
0:43:38.3 KY: I just didn't know what was happening. I was in and out of ER, like emergency rooms. A lot of the doctors would be testing me from Lyme disease or muscle dystrophy. They even took a muscle biopsy to see what's going on. And as many of you may know, that along the road to a diagnosis can be long and arduous. And mine was no different. I was getting weaker and weaker. I couldn't lift my arms to brush my hair or just play the piano, which is right here, right? And soon I was taken, with my family to Peru to see some specialists there. And when I came back, I was no longer able to walk. It came to a point that it also got really tiresome to chew because my esophagus was getting weaker, so I couldn't eat a lot. I still remember the day that I couldn't swallow anymore.
0:44:38.8 KY: I was very thirsty. So I asked a family member to give me a cup of water. And as I took it, I immediately started choking, coughing, and I started to tear up because I was so thirsty. I felt like my heart was about to come out of my chest. In a frenzy, I was taken again to the emergency room. They inserted a feeding tube and took me up to the University of Utah Hospital. And it was there that I was diagnosed with dermatomyositis, which is an autoimmune disease in which a muscle inflammatory disease that essentially the immune system attacks my muscles.
0:45:26.4 KY: I was given so many treatments, steroids immediately put into therapy, occupational therapy, physical therapy. I was also given one of those wonderful hospital room jug. You know what I'm talking about, the ones you take as a souvenir when you get home. You know what I'm talking about. You know what I'm talking about? Yeah. So I was given those and I did not use it to drink. Oh, no, because my esophagus was weak and I couldn't swallow. I also couldn't swallow my spit. Now, this is something that I didn't know, but we're constantly swallowing, like subconsciously. And since I couldn't do it, I had to spit into this jug. I know. So gross. But it was my reality and I couldn't sleep because of it. I really quickly started going into a dark place. I remember that they had to insert a PICC line in me on this side because it was going to be a prolonged stay at the hospital.
0:46:30.3 KY: And the day that they were trying to insert it, they couldn't find a vein. I know it happens. And I was just standing there, almost spacing out. And I looked up and I saw my mom across the hospital room, and she was bawling, which made me cry. And I didn't want her to see me like this. So I asked for the healthcare team to usher her out of the room, but she wouldn't budge. And so we're both there just crying. And of course, yes, it hurt, but because of them trying to find a vein.
0:47:06.0 KY: But it... And also, this wasn't the first time we have been overwhelmed with this entire ordeal, it was more than that. Her and I, we locked eyes and we were connected and we started to reminisce on everything that has happened since it started. Her and I have lost our jobs, I stopped going to school, I could not help in the informal translating or interpreting in medical settings as I usually do because I was the patient this time. We both couldn't sleep. My whole family has gone through a lot with this ordeal and in the future months that would come, we would eventually lose our house because of the stacked medical bills that would come. My mental health was deteriorating and I knew I had to leave. So, we asked the medical... The team to see there was a way to do this at home, and they highly advised against it. They said, and I quote, that, "I have everything I need here, and if I were to go home that it would cause irreparable mental damage." I understand where they're coming from, their expertise and their experience, they want what's best for the patient. And, not but, and I would want them to also trust me as the patient. The patient being part of the healthcare team, knowing that this is something that, at least for me, I needed this, I needed to go home.
0:48:45.3 KY: And so with that, we worked something out and I was able to get care and recuperate at home. Now, it wasn't easy. Okay? My family and my community really came together to help me the following months to continue the therapy. I would practice on teaspoons of water and... Because I fear aspiration and so did everybody else around me, I would it really slowly. I would also practice with apple sauce and bananas. And now that I'm in remission, if you're wondering if I eat apple sauce and banana to this day, rarely. I am so sick of apple sauce and banana so you can imagine how it was teaching my kids solids. I'm like, "Yes, apple sauce, so good, yeah, you can do it." And I also would get a lot of comments on my body too, "Wow, you look so good. Wow, you're looking really skinny. Hey, at least you look good." And to combat the notion that thinnest equates to optimum health, I did it the only way I know how, which is sarcasm. So I said, "Thank you, it's the feeding tube diet. I highly recommend it." And I'm not saying that I prefer my body one way or the other, absolutely not, but I am just in awe of what my body has gone through medically, through this autoimmune disease, the... Birthing two children since.
0:50:25.6 KY: I know there's some things that I still can't do, things just don't bend certain ways, I'm still recuperating in a lot of ways. But I honor her still because my body is a wonder and your body is also a wonder. I want to appreciate and celebrate every season, every size, every reason. And I know that as the years go by it will also just keep on changing and evolving. I am still in shock of the day that I officially was able to swallow again. It was later into that year, and by that time I could take a couple of steps and my speech therapist, was saying, "Okay, it seems like we're good to get an official testing done. Let's do it. We're going to go ahead and bring the test to your house." And I said, "Oh okay, I don't know what that looks like." He said, "It's just outside." So my brother helped me out and walked me to the door and outside of my house, and there was a big black van. I had no idea that you could do this, so this was all new to me, and they said the machine was inside. So I went inside and there was other healthcare professionals there as well, and I sat down, and they gave me some water and they also gave me, yes, some banana. So I ate a little bit of that. And I saw the machine on my side and I could see it go down, and I was like, "Oh, okay yes, I can definitely do this."
0:52:07.3 KY: And then one of the healthcare professionals gave me a pill, it was this big. And I know from where you're sitting, it probably doesn't look that big, but for somebody that hasn't been able to eat for a while or swallow, it was ginormous, and I looked at the health care professionals and I said, "Do any of you know the Heimlich? Because you're gonna need it. Also, why don't we delay this? I would love to welcome you back another day because I definitely don't wanna do this." I was so scared. And I grab some water, I looked at the machine, and I attempted to swallow and it went down. I didn't choke, I didn't cough, I was able to do it fully. I was so impressed with myself, I was just in shock. My speech therapist looked at me and said, "Yes, Kathy, you did it. How do you feel?" And I literally had no words, I was just sitting there, just in awe of what I was able to do, that I wasn't able to do for so long. And he said, "Well, now that you could do that, what do you want to eat or drink? I know some of... Most of my patients actually ask for a diet Coke. Do you want that?" And I said, "Nah, I want a Slurpee." Thank you.
[applause]
0:53:51.7 KC: Thank you Katty, for sharing that. For the nurses, pharmacists, and physicians in the room, when she talked about the pill she was taking, was any of you trying to figure out what she's taking? I was gonna guess potassium. So I see Aaron up there. Yeah, potassium would be my guess. And thank you Katty for reminding us that the patient needs to be center and focal point of the care, and that they are definitely a part of the medical team. Although listening to your story, I hear the culprit in all this is running. So remember, running is bad. [laughter] It's bad for you. Our next speaker, Kerry Magiske. Magiske had a really cool response in the pamphlet or the brochure. She talked about her super power via teleportation. And that's something I just never thought of and it would be one of the coolest super powers to actually have. And the questions about her... The movie and the actress that would play her, she selected Sarah Jessica Parker in a comedy drama movie. So, without further ado, Kerry.
[applause]
0:55:01.5 Kerry Magiske: It was August of 2022, just about 10 months ago. My husband, Mike, my 13-year-old daughter, Kira, and nine-year-old son, Tristan, were in Costa Rica, celebrating my graduation from the University of Utah Doctor of Nurse Practice Program. I was a nurse practitioner. We had spent many family vacations at the beach, and on this vacation, we were at Manuel Antonio National Park. I had grown up in Hawaii, on the north shore of a O'ahu. Mike and the kids and I had spent our vacations playing in the waves and diving under the waves at Pounder's Beach in Laie, diving off the lava rock into Waimea Bay, or swimming at the beach across from my parents house, the house that I had grown up with in Punaluʻu. And now we were at the beach in Costa Rica enjoying the waves. The skies were grey, but the weather was warm, we were having a great day. Smiles all around, salt on our lips. We were having a contest to see who could body serve the farthest up the beach. So in body surfing, you don't need any equipment, it's just your body gliding through the waves. Mike took the next wave in while the kids and I dove under it. We got up and turned around to see how far Daddy made it up the beach.
0:56:37.5 KM: Sure, he was trying to win the contest and to get farthest up the shore. It took a while for Mike to pop up, but then we saw him, his head popped up out out of the water, but suddenly his head went immediately back down under the waves. Something was wrong. The kids and I ran through the shore break to Mike, he was tossing and turning in the waves, he could not move. The kids and I pulled his body through the shore break onto the shore, screaming for help. We got to the shore and Mike mouths, "I can't breathe." In all my years training as a nurse and as a nurse practitioner, I had gone through many first aid and CPR trainings. We learn what to do if a patient is having a code or if you're out in the community and that... You see someone who needs help. But never once was the scenario, it was your husband who couldn't breathe with your two kids watching just feet away. Mike couldn't breathe. I provided rescue breathing for Mike for 35 minutes. Finally, finally, the emergency services arrived. In the course of five days, we were in three different Costa Rican hospitals. My medical training had taught me enough that Mike's injuries were serious, but I was also incredibly hopeful, Mike's a fighter. On the fifth day, we finally made it back to Utah via air ambulance to the University of Utah Hospital and the neuro critical care unit.
0:58:28.2 KM: The day after we arrived back in Utah, we had a meeting with Mike's medical providers. In that meeting, my worst fears were confirmed. Mike had suffered a severe spinal cord injury, he was now paralyzed, a quadriplegic. He was on a ventilator as he was unable to breathe, and he had a severe case of pneumonia. On Mike's last day, exactly a week after his injury, there were no final breaths... There were no last breaths to take, he couldn't... There were only final beats of his heart. I had promised Mike that he wouldn't be alone, and I had promised the kids, and he wasn't. By his side, I lay, just Mike and I. He was finally at peace. No more hungering for air. His body was being freed, free as a bird. Free Bird, his favorite song. It was our last cuddle and our last embrace, as death did us part. I had walked into that hospital a wife, and I was leaving a widow. I was truly at a total loss, wondering how would I... How would the kids... How would we ever be okay? How would we ever move forward in life? In the months since Mike has died, I have gone to a lot of grief and trauma counseling, and one of the things that I've learned about are grief bursts. And grief bursts are sudden burst of emotion that may occur unexpectedly or in response to a special memory or situation.
1:00:38.2 KM: I experience a lot of these. But one thing I know, although these outbursts of emotion are physically taxing and mentally taxing, they also give me an opportunity to feel a little better. A few months after Mike died, I was at the gym exercising and lifting weights, it had actually been a pretty good day. I went to the grocery store, I took out the trash, and I exercised, all in the same day, which was something that would have been really difficult to do just weeks before. I was listening to my 90s R and B Spotify playlist when a Mariah Carey song comes on, We Belong Together, a love song. The tears start streaming from my eyes and staining the black gym floor, I quickly sit down on the weight bench and I look around to see, has anyone noticed my outburst? I try and turn off the song and finally I quiet Mariah. And in that moment, I have two choices. First Choice, I quickly gather all my things up, race out of the gym, go into my car, turn Mariah up really loud and just cry and feel my sorrow in the moment. Or I could stay, finish my workout, go back to feeling the burn in my biceps, knowing I'll feel a little bit better if I finish the workout. And on that day, I decided to stay. But no more 90s R and B and Mariah Carey, it's time for some 90s rap. Alright. And the sounds of Ice Cube, Today Was A Good Day, to take me through the rest of my workout.
1:02:33.4 KM: On another occasion, just about three months ago, I had the opportunity to interview for a teaching job at the U in the department of health and Kinesiology. As part of the interview, I was to give a presentation in a functional anatomy course to a group of undergraduate students as luck or misfortune would have it, the topic of my presentation for the week that I chose was the spine and trunk. Okay, so I prepare my presentation. Before I give my presentation, a friend agrees to meet me in the lecture hall to practice. On that day, I walk into the classroom door and again, the tears start to fall. I can't believe I have to present on the spine. I can't believe that my husband is dead. I am so tired, and I just want life to be normal again. And on that day, I choose to feel all my feelings, to be sad, to feel my grief, to feel my sorrow. Exactly a week later, I return to the same classroom to give my presentation to about 50 undergraduate students, as well as faculty in the department. And on that day, I'm excited, I feel confident, and I did not, thank goodness, shed a single tear. Because I had given my chance to feel my sorrow and my pain and feel all the feels the week before, I had given myself an opportunity to have a good day. And in case you were wondering, I was offered the job and I accepted.
[applause]
1:04:35.5 KM: Yes, thank you. So, in the months since Mike has died, life has been really hard. There's nothing that could have prepared me for what it's been like, to go through Mike's injury, his death, our grieving process. The kids and I have had a lot of firsts these last few months without Mike. First days of school, first rock climbing competition, first baseball games, holidays, and we still have a few more firsts to go. First Father's Day. Mike's 50th birthday. The anniversary of his death. But despite our grief and despite how hard this is, I stand before you today, and my kids sit amongst you today, and we are doing okay. We have been surrounded by the love and support of so many people that care for us. We go to counseling, I drag the kids on long walks and hikes, and we remember that we have so much to live for, there's so much that we wanna accomplish in life. And Mike would tell us to follow our passions, and he'd tell us to go big, to send it. There's one thing that my son has said to me that still resonates with me. One day he said, "Mom, I can't believe that everyone, everyone in the whole world will lose someone that they love, and this is what it'll feel like, this is what they'll go through." But I want you to know, when it's your turn to lose someone that you care about deeply, you too, you will learn to be okay, and you too will have good days. Thank you.
[applause]
1:07:07.6 KC: Kerry, thank you for sharing that, just touching story. I'm just blown away at the musical references you made and that talk... Talking about your 90s playlist, your 90s pop list of Mariah Carey, your husband's favorite song of Free Bird and of course quoting Ice Cube. To quote Free Bird, "If I leave here tomorrow, will you still remember me?" And I think Mike will definitely say, "Yes." So thank you again for sharing that wonderful story. Our next speaker is Ivan Vazquez. Ivan is a animal activist, or animal advocate. And when asked if... What... Who would play him in a movie, he said, Ricky Martin, because he dares to dream. And so the movie would be a mix between a comedy or a drama or whatever you want it to be. So let's have Ivan come on up and tell a story.
[applause]
1:08:06.2 Ivan Vazquez: I would like to start by reading an email that I sent out to my entire team a couple of years ago on February 9th, 2021 at 4:22 PM at the very end of my shift so that I could run out of the building as fast as I could the second I hit send. And I think you'll understand why in a minute. Unfortunately I don't run as fast as I would like. But, here we go. Hello, I wanted to update everyone I work closely with on my name change, so that there's no confusion in clinic. As some of you know, I began medically transitioning a few months ago, and although it is not yet a legal name change, and my epic notes will still display my old name for now. In clinic, I now use the name Ivan with patients and staff. He/him pronouns are also appropriate. As far as patients are concerned, it is likely that I will not always be addressed correctly, and my preference is to just let that go. These are brief interactions, and there's no need to take the focus off the patient visit over a simple correction. Same goes for everyone else. I understand these things take time to adapt to, and it's not a big deal if it takes some time for the change to stick. If anyone has any questions or concerns about this by all means, feel free to ask. I can't thank you enough for your support thus far. The next few months may be a bit awkward and vulnerable for me, but it's also pretty wonderful.
1:09:34.8 IV: Admittedly, the whole experience is very humbling, and I appreciate the lengths you've all gone to, to be supportive and make me feel safe in all the ways that count. Not everyone in my position is so lucky. You guys are the best. Sincerely, Ivan, formerly Ilya. Ilya Tomaravaskis was my name for 41 years. And I know it is not customary. For people in my position to share the name that we were given at birth. It's generally associated with a lot of trauma, a lot of discomfort, and a life that we very much wanna leave behind. But there's two reasons why I'm sharing the name with you tonight. Reason number one, I didn't transition until I was 41. So I have all these memories, some of them really hard, but a lot of them really wonderful, as Ilya. Ilya made me a mom. She is my heart, she is my conscience, and she is the driving force behind the kind of man that I am trying to become. And I wanna honor her by speaking her name.
1:10:41.4 IV: Reason number two, I am terrified right this second. If my voice is breaking and if my hands are shaking, it is not stage fright. It is fear that I won't be accepted because of the things that I'm gonna share with you tonight. That I might be ridiculed in ways that I have been before. And that is intense. But more than anything, I am hopeful that something I have to say will resonate with you, not as a transgender man, but as a human being. And I'm not completely sure why, but after thinking about all that, I just thought you guys ought to know that name. Obviously, it has not been an easy road getting to where I am today.
1:11:28.3 IV: I'm about three years into my medical transition, and I still haven't a clue how to be a man. I keep trying, and for the life of me, I cannot figure out how to tie a necktie properly. It comes out crooked every single time. It is too dark in here for me to be able to tell if any of you have one on, but if you do, kudos for figuring it out. I have wonderful friends. I have the most amazing inner circle of friends. And they are predominantly women. Strong, amazing, resilient women. And I am lucky to have them in my life. But I really want a bromance.
1:12:06.3 IV: It feels like a rite of passage that I'm very attached to, but you can't exactly go up to the average guy and say, hi, I am Ivan. Cinderella is my favorite movie. I'm totally stoked about The Little Mermaid. I know very little about sports. Will you be my best friend? Life does not work that way. I wish it did, but it doesn't. So obviously, there's a lot that I have to figure out. I am still doing way better than I was doing in the beginning.
1:12:36.8 IV: For some reason, after I first changed my appearance, I got it into my head that the only way that I could look handsome was to walk around, not smiling, looking completely serious. And I thought that would add up to manly for me. In retrospect, I think I may have gotten it from the movie Zoolander. And it wasn't until I started getting texts from concerned coworkers asking if I was in some sort of distress or angry over something that I realized it was not working for me. And so I course corrected, and now I smile all the time.
1:13:12.8 IV: I am very lucky to have the coworkers that I have who were brave enough to tell me these things that I really needed to hear. And I knew, I knew going into this, that I could count on support from my team. I had been through other really hard, unusual things before, and they were there for me, and I had no doubt that they were gonna find a way to be there for me now, even though this was so completely removed from their comfort zone.
1:13:38.9 IV: Patients, on the other hand, were a different story. I wasn't sure what I could expect from them, and I'm the single parent of a special needs adult, and so professional safety was really, really important. And in order to keep myself safe and give myself a better chance at passing as male in the early stages of my transition, I decided to do something that I had never felt the need to do outside of a professional environment. I started to bind. Binding involves using compression clothing to minimize the more prominent aspects of the assigned female at birth body type. And it works really really well. It did, in fact, help me pass as male, but it also made it really, really hard to breathe.
1:14:28.8 IV: Every time I put one on, I just felt like I was breathing through a straw, and it was really uncomfortable. But I thought to myself, like, okay, what am I gonna pick here? Am I gonna pick breathing, or am I gonna keep myself emotionally safe, professionally safe, and potentially, because sometimes it's an issue, physically safe? And so for me, at the time, it made sense to start binding during work hours. Thankfully, that is not something I feel the need to do anymore, and the reason why I no longer do it is because of a really unexpected patient encounter. It happened at the height of the pandemic, and if any of you happen to work in healthcare, you might remember that we were all... We were not doing okay. It was a really hard time. We were short-staffed. We were sad and scared, and one particular day, I had had it.
1:15:20.7 IV: If I had been independently wealthy, I would have quit, but that is not the case, so I had to find a way to make things easier for myself for the rest of my shift, so I knew that the only thing I could do was to take off my binder. I went to the bathroom. I looked at myself in the mirror. I had a very heated conversation with myself. I used a lot of special language that I will not use here tonight, but if any of you happen to be SpongeBob SquarePants fans, you might remember the term sentence enhancers. I used a lot of those as I worked up the courage to leave that bathroom unbound as a visibly transgender man. Eventually, I did it. I worked up the courage. I ripped off my binder. I went outside. I threw it in my locker, and I went on about my day, and the next patient was the one who completely redefined the way I approached my transition.
1:16:13.8 IV: It was a young woman, and her daughter, the daughter, happened to be the patient, and I called them back, and within minutes of me getting them into an exam room, they had given me so much information. The pandemic had hit them really, really hard. Job loss, health issues, some really interesting family dynamics that I will not get into here, but because she had shared so much information about who they were, I also had enough information to know. This family did not come from a world where people like me are accepted, so I was ready for whatever was coming my way.
1:16:52.4 IV: I think if you work healthcare long enough, you understand that people are coming to us in a really bad place more often than not, and generally, they are not in a place to give us the best version of who they are, but we are committed to give them the best version of who we are. That is something that I take very seriously, not just in my professional life, but in my personal life also, and so I was waiting for something to go down, but as I'm moving through the workup, and I'm getting ready to put dilating drops on this young girl's eyes, she starts to panic. She got hysterical, and then the mom turns to her and says, it's okay, honey. This young man is so sweet. He is being so kind. He is thoughtful. He just wants to help. He wants you to get better, and my jaw dropped. I was not prepared for that. I pass really well now, but back then, I did not, and I had just removed the only article of clothing that I had that was helping me to pass. The only thing that I had left was my employee badge, which does say he, him pronouns, and the mom did notice, and that much had been obvious, and I wasn't ready for respect at that moment from that patient, and it just, it blew me away.
1:18:13.5 IV: If you are familiar with some of the unfortunate rhetoric around people like myself, you might understand and appreciate why hearing the words, he is so kind, he is so thoughtful, he is trying to help, would have affected me the way that that did. I left the room, and I gave myself a few minutes to process, and I thought to myself, wow, from this point forward, if I never put that thing back on, everyone that I interact with will know that a man could look like me, and that a man that looks like me is worthy of respect, and that a man that looks like me might actually be there to help, to make you better, to make a difference and I realized there was so much power in not hiding, in facing the world as a visibly transgender man, unbound, and I wanted that. I wanted that for me, I wanted that for my community, and beyond my community, I thought about the benefit to the patients that we serve.
1:19:22.5 IV: Sometimes it is my experiences as a woman that help me connect with patients. Sometimes it is my experiences left as a man that help me connect with patients. I don't have the luxury of time, so I don't get to tell you all the complexities of the interesting life that I have had, but I can tell you that I have been a daughter, a sister, I have been the doting wife, I've been a mother, I have survived homelessness, I have survived domestic abuse.
1:19:56.2 IV: A lot of people are surprised when I talk about the marriage that I left behind. They assume that I left my marriage to embrace this life that I have now, this beautiful, wonderful life that I love. That was not the case. The last day that my husband spent at home with me and my son, I had a fight him off with a broom, a cheap, surprisingly sturdy dollar store broom.
1:20:19.8 IV: My ex-husband grew up in a very unhealthy, traumatizing environment, and that added up to him being emotionally abusive when we were younger, eventually physically abusive as we got older, and he was not safe to be around. And so my marriage had to end. That broom still stands by my front door. I've moved a handful of times, since my marriage ended, and I will keep that broom by my front door for the rest of my life, as long as it is standing, because it makes me feel so safe. And it reminds me of everything that I have fought for.
1:21:00.1 IV: When you've had a life like that, it changes you. At this point, having lived through these things from both the female and male perspective, there's no one that I can't relate to. There's no one that I don't understand or have compassion for. And I thought to myself, wow, this is such a helpful tool in healthcare. This is such a great way of me connecting to patients, and it's absolutely worked out that way for me. I've had grown men sobbing in my exam chair upon finding out that I was transgender, because all of a sudden, they felt like they could tell me things that they couldn't tell anyone else. And that was powerful. That led to better healthcare for our patients. And that is something that I want to continue. It just felt like the most wonderful gift. The last thing that I wanna say, I want to read directly from my notes, because I'm over 40, and I can't remember things the way that I would like to.
1:21:54.8 IV: And I was so alert, and it sounded really catchy when I wrote it, so I wanna make sure that I get it right. Sometimes, in the midst of hardship and setbacks, if you can look around and see just one thing, one moment, or one person that you can see love and beauty in, one thing that lets you breathe, like that patient encounter did for me, like this moment is doing for me right now, because this is actually the first time I have stood in front of an audience as a man. So thank you for sharing that with me. It gives you hope, and I hope that moment finds you all. Thank you.
[applause]
1:22:44.1 KC: Ivan, thank you for walking us through your incredible journey. Just incredible to hear this story again. Although I will say, bromances are probably a little overrated. If you want tips on how to pursue one, beer. Probably my best advice. And also, when you're talking about Zoolander and the look you're walking around with, we're using the right look. There are multiple looks. You have blue steel, the Tigra, Ferrari, or my personal favorite, Magnum. They're all different looks, trust me. Our next speaker, Susan Madsen. I've had the pleasure of working with Susan directly for the last 13 or 14 years at University Hospital, and I just adore working with her. She's considered the aunt of our department, somebody who just knows what's going on, everybody and somebody that our staff come to for all their issues. She's got a heart of gold, and again, a pleasure to call her a colleague, friend, and excited to hear her story.
1:23:40.2 KC: She mentioned to me in a movie, she would love to have a romantic comedy of some sorts, played by Diane Lane. I have to admit, I have two small children right now, so watching TV is really not a big thing for me. I had to Google Diane Lane, and I'm like, oh, Sherry from The Outsiders. So I'm dating myself in that reference there, but that's what I keep on thinking about when she said Diane Lane now. So Susan, come on up.
1:24:17.2 Susan Madsen: Good evening, everybody. I'm excited to be here tonight and to tell you this story. This just happened to me this past January. I was binge watching one of my favorite British TV shows called 24 Hours in the A&E. It's a documentary type show where they film for 24 hours in an emergency room in London. And in the show, they bring in a patient. His name is Mark. He's about 32, 33 years old, and he's had a seizure, and they're gonna try to figure out why he's had this seizure, but as they bring him in, and it's in the middle of the night, I'm watching this, I look at him and I think, he looks like my brother Ethan.
1:25:03.0 SM: Let me tell you about my brother Ethan. My brother Ethan was born in 1973, and he just turned 50. We had a big birthday party for him. When he was born, my mother knew that something wasn't quite right right away. She tried to nurse him, and he couldn't nurse. He didn't have that innate ability to nurse like most newborns have. So medical tests started to be run, and a bunch of tests were run as a newborn and as he was a young child, trying to find a diagnosis for him. And my parents finally called for the medical tests to stop. They felt it was only harming him. Nobody was finding any answers, and they had put my parents in a medical debt of around $20,000. Now, I calculated that in 2023, and that would be about $139,400. So that's a lot of money. That was a really financially hard time for my parents.
1:26:04.9 SM: So we just thought that Ethan was his own unique disability. And one of the heartbreaking parts of this is that my mother blamed herself her entire life, she thought that it was her fault, that she had caused it. And that always broke our hearts that that was the case. So now back to the show. They bring Mark in, and Mark's parents come into the ER. Mark's parents' names are Ian and Leslie, and they start talking about Mark when he was a baby and when he was a young child. And there are more similarities to Ethan when he was a young boy. There are things that are mirrored, and I'm just fascinated by this. I'm just in awe that I'm seeing this. And some of the things they say are that Mark reacted very negatively to food and to feeding, and Ethan experienced that as well. And that Mark was really sick as a baby and as a young child, and Ethan was very sick as a baby and as a young child. That Mark was delayed in learning to walk and to talk, and Ethan was delayed in learning to walk and to talk. And so this was fascinating to me.
1:27:16.0 SM: And then a nurse comes in and brings Mark a paracetamol to take. That's British for acetaminophen. I work in pharmacies, so I know. And Mark's having a hard time breathing in this show. So they pull his oxygen mask down, and the nurse gives him a cup, and Mark takes a hold of this cup, and he has Ethan's hands. And the way he holds the cup is the way my brother holds a cup. The way he swallows is the way my brother swallows. The way he breathes is the way my brother breathes. And my head explodes.
1:27:56.8 SM: I can't believe what I'm seeing. And the next thing that happens is Mark's mother starts to talk about their pediatrician and how they had a very bright and intelligent and determined pediatrician who really looked through a ton of textbooks and observed Mark and finally diagnosed him with a very rare genetic condition called Noonan syndrome, which I had never heard of. And I'm in awe of the show, and I think, did I just discover my brother's diagnosis after 50 years? And I want to call my mom and dad so desperately, but they're both deceased, so I can't call them. And it's like 3 o'clock in the morning. I have nobody to call. I'm just wandering around my house in this wonder and awe of what I just watched. It was awful. But what I do do is, as soon as possible, I make an appointment for him to have a test done and make an appointment with his primary care doctor here at the U to have a test done to test him for Noonan syndrome.
1:29:07.9 SM: Personally, I didn't need the test. That hand holding that cup was the test for me, but no one would believe me, obviously. But my sister and I go with the doctor to the doctor's office, and he agrees to test Ethan for that. He said the test would take three weeks to come back. It took a week, and the test came back positive for Noonan syndrome. Now, it might seem strange as siblings, and there's five of us total, Ethan and then the four siblings, that we would be overjoyed with this diagnosis. But we were, because knowledge is power, and the unknown is awful. And we were overjoyed to have a diagnosis after all this time. And so we got together, and we're gonna sit down and tell Ethan, and I was a little worried about how Ethan might take this news. But we sat down and we talked about it with Ethan, and my little sister had told him even that there was a Facebook group with, and you know, all these patients who have Noonan syndrome, and we were discussing it with him.
1:30:15.7 SM: And I'll never forget, he got a grin on his face, and then all of a sudden he said, do you mean I'm not alone? And I'll never forget that. I can't imagine what this has been like for him, to think he's alone his whole life, and then to know that he's not, and that there are others who have struggles and challenges just like he has had. And so that was an amazing moment for us in this story.
1:30:49.4 SM: A couple of days later, I'm riding home on the bus, and the thought washes over me. Oh, my Aunt Connie had Noonan syndrome. So my mom's little sister, my Aunt Connie, passed away in 1959 at the age of 12 after a heart surgery at Primary Children's where they were trying to correct a congenital heart defect. So one of the characteristics of Noonan syndrome is that you can be born with a heart defect. Ethan, gratefully, was not, but my Aunt Connie was. So on the bus, I look up Ethan's test results, and it says genetic counseling recommended. And I get a referral from Ethan's doctor for genetic counseling. That hasn't happened yet. We've made lots of phone calls, phone calls back and forth. They've said, oh, you need to call here, no, there. So if anybody has any connections on how to make genetic counseling actually happen, that would be great to know because we're really interested.
1:31:50.6 SM: This has affected, as you can imagine, our extended family. We have some answers, but we also have lots of questions. So we're still looking for the genetic counseling piece. Another characteristic of Noonan syndrome is they have darker pigmented spots on their skin, and Ethan has these on his back. So during that very first appointment we had where we requested the test for Noonan syndrome, his doctor was looking at these and said, oh, he's got a mole on that right shoulder that does not look good. That needs to be removed. So it was, and unfortunately it came back as a malignant melanoma. And then because it was right here near his armpit where we have our lymph nodes, he was referred up to Huntsman and needed actual surgery under general anesthesia where they had to remove the cancer and then a couple of lymph nodes. And unfortunately one of the lymph nodes came back with a small cancerous tumor in it. But we would never have been looking for that had I not seen this show, had Mark not decided to do this show, and we'd not made that appointment. So this experience has probably saved Ethan's life, but we're on that journey with him now.
1:33:17.0 SM: Back to the show, the doctor that's assisting Mark, they figure out what caused his seizure, is that he had a severe lung infection and pneumonia. And the doctor says patients with Noonan syndrome are at risk for severe lung infections or pneumonias. And this reminded me that three years ago, Ethan was very sick with pneumonia and was hospitalized here at the U, and at the same time, our father was dying and he was hospitalized in Ogden, and that was a really rough time. Ethan started to do a little better and was discharged, and then our dad passed away. And then Ethan deteriorated and was re-admitted and he missed our father's funeral, which was awful. And I remember being with Ethan here at the U and a doctor saying to us, "I just don't understand why he's so sick, why a young man is so sick like this." And I think back now how great it would have been to have a diagnosis to say, "He has Noonan syndrome and that's why he's so sick." And just in March, Ethan got double pneumonia again, and it was great to say, "I have a diagnosis, and this is why he's so sick." And it did make a difference, and it was better. It was great to have a diagnosis. Diagnoses are important.
1:34:40.8 SM: One of the greatest parts of this journey for me has been, I joined a Facebook group and the power of social media, it was a Noonan Syndrome Foundation Facebook group that connected me with Mark's parents, Ian and Leslie in London. And we started emailing. And that's been a great experience because I wasn't able to talk to my own parents, It was awesome to be able to talk to Mark's parents. And they shared with me some similarities that I saw in my own parents in the way they both treated their sons. And I wanted to share that they both wanted their children to be as independent as possible. They both saw the inner strength in their children. They both saw that their children had fantastic independent spirits. Both boys attended normal schools with special ED programs, and both parents are so proud of their son's accomplishments, and those things mirrored my parents as well.
1:35:44.7 SM: Then in one of the emails, we've been emailing back and forth and sharing pictures of grandchildren, which has been so fun. And then Ian, Mark's dad sent me a picture of his back garden, which was absolutely beautiful. And I'm super jealous 'cause I don't even have a back garden, so whatever. [laughter] They're amazing. But anyway, Ian shared this with me in an email about Mark's decision to be on the show, and I'm just gonna read it because it's a quote. When Mark ended up in St. Georges and the cameras were there, only one result was possible. Mom and Dad, I want to do it. There was more to it than you might think, footage from the hospital cameras and microphones, then 12 hours of filming at home, all boiling down to perhaps 40 minutes of TV footage. Mark saw the first cut of the program and it had his approval. The TV company were very good, very sensitive and gave us a choice whether to go ahead after he passed away. There really was only one answer, what would Mark have wanted? It has been a force for good, and that is what Mark's life has been as well, a force for good.
1:37:00.6 SM: Over 400 people attended our small church to celebrate his life with local shops closing for the afternoon. Not many get that, but we do miss him dreadfully. We are so grateful for Mark's amazing and courageous decision to share his story about it. Our family would still be wondering. And we're grateful for Ethan, who's with us tonight.
[applause]
1:37:37.0 SM: He's an amazing man and he unites our family in ways I can't explain. I'm grateful to my siblings and my parents and for this opportunity to share this story with you. Thank you.
[applause]
1:38:08.9 KC: I've heard that story a handful of times over the last few months, and it gets better every single time I hear it. I'm just blown away at Susan and her family, and the resolve that Ethan and everybody has. I think about how just a random chance of watching late night TV led to something so significant. So again, incredible story and again, knowing the Manson family, and it's just an incredible family in general. Our next speaker is Charles Teames. Charles just started his fourth year of medical school at the University of Utah. Charles is an actor by training, as well as his wife. And when I asked the question about who would pay him in a movie about his life? He said his wife, and he would play her.
[laughter]
1:39:02.9 KC: They must be pretty good actors. So our last week tonight, Charles Teames.
[applause]
1:39:16.4 Charles Teames: On a Monday in June, roughly a year ago, I reported to the hospital at 5:00 AM for my first surgery as a third year medical student, the procedure was called a tracheal resection, and the patient was a young woman with a condition called tracheal stenosis, which is where the trachea or the wind pipe becomes scared and narrowed, it makes it very difficult to breathe, and so this procedure was going to remove about four centimeters of her trachea and then reconnect to the ends back together so that she could breathe normally again, it's a very long and difficult procedure, there's many things that can go wrong, it takes about eight hours, and so being in the operating room for a procedure like this is an experience that is full of awe and wonder for all of about 30 minutes.
1:40:04.2 CT: Because you have to understand that as a medical student, when you're in the operating room, it's just a very socially and physically uncomfortable place to be. Socially, because you're being graded, there's this very intimidating surgeon who is observing everything you do and making sure you don't mess up, asking you random anatomy questions at any given moment. And so you're just terrified the whole time, and then physically, you have to scrub in and properly have to wash your hands in such a way that you don't contaminate yourself, and you get to put on the gloves and the gown perfectly so you don't contaminate yourself or anybody else, and you go to the patient's bedside and you stand there and you can't touch anything that's not sterile, and your hands have to stay in what we call the box, your hands cannot go above the collar bones, your hands cannot go below the waist.
1:40:56.6 CT: Otherwise, if they become non sterile, you then have to de-scrub it and then re-scrub it. And it's a whole mess. And so here you are standing like this, and you're holding a retractor usually, and you're boiling hot 'cause the lights are beating down on you, and you try not to pass out, your feet are going numb, and at any moment, the surgeon can yell at you and ask you a question to identify a piece of anatomy that you can't see it because you've been spaced out for the last three minutes 'cause you're trying not to pass out. It's just not a very pleasant experience. The novelty wears off very quickly, so I show up to the operating room, I'm very nervous, we get the patient off to sleep, and the surgeon turns to me and says something that should normally be very comforting and inviting, she says, Hey, this is gonna be a really long procedure, and I always feel really bad for the medical student because you just have to stand here the whole time, so you get to pick the music today, and I immediately panic and my mind goes completely blank, and so I just say The first musical genre that comes to my mind, which is Ska.
[laughter]
1:42:03.0 CT: You don't know what Ska is, it's a musical tradition, has a rich history at borrows influences from jazz and from reggae and from punk rock, I quite enjoy it, but I also acknowledge that is a very acquired taste, the kind of taste that you can really only acquire by being a teenager who spent too much time hanging out at Hot Topic, like you know, when you show a friend a TV show and you really, really want them to like it, and it becomes obvious like five minutes in, they're just not into it. But you have to sit there for the rest of the episode, like in awkward silence, imagine that sensation. But for eight hours.
[laughter]
1:42:43.4 CT: So needless to say, I am mortified. Fortunately, nobody's implied enough to mention it, there's one particularly long and obnoxious trumpet solo during which the attending surgeon looks up at me and make the face that you make into your fridge when in the morning when you're trying to find a snack.
[laughter]
1:43:02.1 CT: One of those, despite all of this, the surgery is going fine, we have the patient's neck open, we have exposed the trachea fully, we've removed the portion without incident and the trachea is just open for all the world to see, and I'm staring down at the barrel of the gun, and the resident notices me staring and she leans over to me and she says, Hey, take your finger in there, so I do obedient-ly, and I look at her quickly and she locks size with me and she says, You don't get to do that every day.
[laughter]
1:43:34.1 CT: So the surgery goes fine, we finish up, we close the trachea securely, it's air tight, we put everything back to where it's supposed to be, and we close the neck back up and we get the patient off the post-operative recovery. When I get home around 7:00 PM, I'm exhausted and I'm just agonizing over how I had behaved, had I come off as weird, Oh my gosh, why did I pick Ska. So how am I going to avoid embarrassing myself for the rest of this two-week rotation, and then the next morning I have to go back and do it all over again, at 5:00 AM I need to report for what we call pre-rounds, which is where the medical student goes and sees the patients you operated on the day before, and if you've ever ever been admitted to the hospital and somebody came and woke you up at 5:00 AM and asked if you'd pooped? Yeah, it was me.
[laughter]
1:44:18.1 CT: That's my job, so I show up and I run to the hospital, and I got this young woman's room that we operated on the day before, and I knock on the door and I open it, and I flip on the light, and there she is sitting, bolt upright in bed, and it is obvious to me that she has not slept a wink, it is obvious to me that she is terrified and she is in pain, and in her neck, there's something called The Grillo stitch.
1:44:48.4 CT: We place it at the end of this surgery, it's a suture that goes through the flesh at the point of the chin, straight down, and then through the flesh over the sternum, and it's held thought. It is intended to be painful. It is intended to forcibly remind the patient not to extend their neck, because if they do, they could burst the stitches that are in the trachea and they would likely be immediately fatal, and so here she is with this medieval torture device in her neck, terrified, in pain, and alone, and I am forcibly reminded of a conversation I had with my father right before starting medical school, my father is a nurse, and he explained to me, Look, medicine will quickly become a job, but you have to remember that... Well, for you, it's just another Tuesday for the patient who were often witnessing the worst day of their entire life. I'd completely forgotten that. In medicine, we intellectuals surgery, maybe it's a coping skill, maybe just out of forgetfulness, but we just... We think of it as an intellectual pursuit, it requires a lot of knowledge and skill and practice a certain degree of artistry, and in the pursuit of those skills, we forget the more immediate human perspective of surgery, which is that... To the casual observer, surgery, and indeed most of medicine, is body horror.
1:46:07.5 CT: It is a terrifying and visceral experience, we had taken this person apart and put her back together again. We had disassembled the biological machinery that was keeping her alive, and I stuck my finger in it. In fact, I've been kind of bored and worried about myself the whole time. And so, in medicine, we are so prone to squeezing out the immediate emotional responses that we should have, those emotional responses that make us human. I understood in that moment why doctors are so frequently seen as cold and uncaring because it happened to me, and it hadn't taken years, it hadn't taken months, it had taken 30 minutes of being a little bit uncomfortable for me to completely forget the life that we held in our hands. And I know it's not comforting for you to hear that from a medical student, but I also feel like if we as medical professionals want your trust, we have to be honest with ourselves and with you. So I spent the next two weeks seeing this patient every morning, on morning rounds, and I got to see her recover, I watched the drains come out and the oxygen come off, and we pulled that stitch from chin to chest out and she could move her head freely again.
1:47:36.7 CT: And I got to see her get her life back, essentially. I got to talk to every morning, and she's expressed, yes, she was terrified by this whole process, but she was also just simply so grateful that she could breathe normally again for the first time in years. And that experience was more wonderful than the most complicated surgery. There's this concept in philosophy called the sublime, I think about it often. It's the combination of awe and terror that we experience when we encounter natural phenomena that are beyond human comprehension. It's different from fear. Fear causes the mind to contract, whereas the sublime, that awe, that terror, causes the mind to expand. And while it's frightening, it also reminds us that we're human, it gives us a deeper appreciation for life and the world and the people around us. It reminds us that yes, the joy that you and I feel are not the same, the terror you and I feel are not the same, but we share those emotions and they remind us that we're human. And I believe it's that sublime, those emotions, that can bridge the gap between patient and physician.
1:48:53.0 CT: In the face of the terror, but also just the mundanity of not just medicine, but everyday life, we can have compassion and empathy for each other, if we can simply acknowledge the miraculous fact that any one of us could be experiencing the highest highs and the lowest lows of the human experience on any given Tuesday. And so I promised that Tuesday, standing in that room, that I would not become numb to the sublime privilege that it is, to work in medicine and with patients. That I would not forget the human underlies, all of the skills that I have to work to attain. I'm not perfect at this. I probably will never be. I can't promise that I'm not gonna get hungry or distracted or tired when I'm taking care of you. I cannot promise that I'm going to be able to maintain a sense of wonder for all eight hours of your surgery. But I can promise that I will always remember that young woman sitting upright in a hospital bed at 5:00 AM, and because of that, I will remember you.
[applause]
1:50:22.0 KC: Thank you Charles for sharing your story. It reminds me as a young pharmacist being coached by a mentor of mine that when you're sitting behind the counter and a patient comes in and they're upset about something, you need to remember, they may have just received some devastating news and take it into context of how you're gonna treat them. Treat the patient, not their anger. I'd like to invite these speakers up, they can come on up and please give them a round of applause as the come on up.
[applause]
1:51:31.6 GC: So thank you so much for coming and for celebrating with us all the hard work and courage and soul and spirit that has been shared with us tonight, it's been our privilege to work with them over the past month, and we're gonna release them in just a minute, so that you can hug them in person, but thank you all for being here tonight. We hope to see you next February. Thank you.
[applause]
1:52:08.4 KC: So thank you everybody for coming out tonight. Just as a reminder, next year we do this in February and next, your theme, will be Promise. So again, we hope to see you in a few months. Thank again.
[applause]
Perry Montoya: Good evening and thank you for coming to share with us this evening, me and seven other fellow storytellers. My name is Perry Montoya and this is my story. It's long been believed that all salmon after being hatched will leave this place of their birth and upon an epic journey, work their way down streams and rivers to the ocean. It's also been long believed that they only return to that very spot once and only once to ultimately spawn and then lay down their lives and die in that very location. Though rare there is a fish, a salmon that actually makes that journey back and forward again and again and again from the ocean back to the headwaters. That salmon is known as a kilt. Salmon, perhaps are very intrigued and and interested in those waterways because yes, it's the place of their origin, but also surely they have to do determine that the chances for their offspring to have a fighting chance will be better if they can go back to where they began as well.
PM: I've lived in 40 homes in 52 years of life and yet each time I keep coming back to this location... And I'll share with you throughout my story, this very location. I'm the first of, sorry, I'm the fourth of four children. I believe my siblings may be in the audience with us tonight. My father was a Navy man and our first home after I was born in LDS hospital Fort Douglas, about 1000 yards from where we now gather tonight. And so this being my home waters, my headwaters, if you will, four or five times during my lifetime. I've been brought back to these my headwaters in my personal and professional life. And I can't help but wonder why, what imprint upon my soul is bringing me back to this location. My parents, as I mentioned, my father in the Navy, my mom ultimately a travel agent, that meant that we were somewhat the livestock and they were the nomads, right?
PM: Maybe not so much, but we did gain their wanderlust. And so I've traveled the world over as a tour guide, as a travel writer, and I love people and places from all over the world. And truly those who know me would know I'd be happy to live in any one of those locations. So why here? Why now? Why am I brought back to this place my headwaters? Maybe if I take you back a little ways. In the early '80s, after having made some moves indeed, previous to that my family had moved to ironically the ocean, Washington State, Southern California, Northern California. I spent time in Texas, each of those, very near the ocean. After having made those travels in my early professional life in 19... Well, actually before that, in my young life in the 1980s, I came back to this very campus time and time again as a young debater who at that time would come to the library that's not very far from here.
PM: I can still smell the books, I can still see the microfilm. Sorry, that makes me old. I know, but I can work through those and I can remember that this campus hold a place in my heart. So was I supposed to come back to these headwaters for all things academic, for me, for my own knowledge and learning? No, in the early 1990s, I found myself in a career, as a medical and marketing and sales individual that brought me back to this campus yet again because the University of Utah Healthcare System was my predominant client, so was I brought back for all things success and finance after all, as a young 20 something, I'd made some money here and maybe money was the reason why I was supposed to come back here. Maybe success. It didn't take long for me to realize that wasn't the case.
PM: At some point I tired of the business world or probably more so of insurance companies and contracts, if you know you know, right? And in the late '90s I determined it was time to move forward, to do something different. Not very far from here on a side stream, if you will. Westminster College was the place where I'd get my undergrad degree and then pursue religious education as a career leaving the business world. The best place for that to happen was here on the south end of campus at the Salt Lake Institute of Religion. And so some 26 years ago I entered their doors and became a teacher. They hired me. Upon being hired, I dove back into, if you will, another yet deep ocean of academia and learning. And I pursued a master's degree. Where would be the right place for me to land?
PM: You can guess here at the University of Utah for a master's in education. Interestingly enough, I accepted my degree on this stage in about 10 minutes. Not 10 minutes, 10 steps from where I now stand. I was asked to be the student speaker for graduation where I said the student first and always, which I still believe by the way, in my professional life. So was my return to this location to be for all things educational? Was it supposed to be the message of that education at all costs? It seems like recently things have been speeding up in my returns. Indeed about a year ago, my wife and I were asked to come here and to help be administrators and teachers for an inaugural youth conference for spiritual learning for 14 to 18 year olds held on this campus and in many campuses throughout the world.
PM: Not long after that I was asked also to return back to this campus and at the same place that actually gave me a job, the Salt Lake Institute of Religion to return and now teach the older age kids, the college age kids and have an experience with them. So is my return to these my headwaters for all things educational, for an opportunity to to continue to move forward and now in a spiritual education versus the educational side I mentioned of just having been a teacher, within one week after being given and accepted the position to come here and teach. I was diagnosed with a serious illness. Remember, kilts are rare. My rare illness is known as Sarcoidosis. Given the job on November 29th, diagnosed on December 1st. I'll spare you all the details that you might not wanna know about Sarcoidosis, like the medical dictionary version or maybe the CPT codes are in what the insurances will pay for.
PM: But I will tell you what it means to me. What Sarcoidosis has meant for me is I stand before you with innumerable nodules in my lungs mimicking cancer, but not cancer. I stand before you with those same nodules in my lymph nodes and in other locations in my body that I'm uncertain of right now. What does that even look like? I stand before you wondering, having questions that are unanswered. I stand before you with what it means to me of in those unanswered questions. Even some physicians one saying to me, Hey, sorry, it's not cancer. 'Cause the money really goes there for research. And so it'd be better maybe if it were that, you can laugh at that. I thought it was laughable. I thought how in the world, right? It means for me untold numbers of people that have given so much to me and my family of time and efforts and finance and in so many ways reaching out to us and knowing I can never repay.
PM: And also knowing that it's impossible to answer to those people. The simple question, how are you doing today? 'Cause some days it's just the same as it's always been for the last six months. Other days the symptoms are flaring and it's too much to explain which one and why. Some days it's good, and if I say it's good, then what happens the next day of what I thought you were good. What Sarcoidosis has meant to me is that in the seeking of answers to questions, I can't just go to any doctor because of the rarity. I'm being referred to referrals by referrals at this point, indeed in the next couple of weeks, in some weird form of excitement, I'm getting excited to go to a national hospital in two weeks to try and get some answers. That's a stream I didn't know I was going to swim down nor be excited to swim down. Sarcoidosis is also meant for me a love and a trust and a care for people. I've lacked in some ways what some of us are pretty well used to. If you have back pain, someone says, oh, my mom had back pain and she or they say, well, when I had back pain, I took, I don't have those abilities right now because it's something that most folks don't know a lot about.
PM: The irony in all of it and what halts the isolation in my swim, if you will, it's you, it's that we're here tonight together because I know you've swam a solo swim before. Yours is different than mine. But me having shared mine tonight in some way unites us together and we're swimming together in the process. While I don't know entirely what's next, while I can't answer the question of why the swim, why the return to this location over and over again, even on this stage at this moment, what I can say is this, I am enjoying the experience of knowing you're swimming your swim as well. Maybe in closing the thought of this, if the answers aren't to be found quickly, then where might it find answers to my story? Maybe like you, I look to those that I've swam with for as long as I've swam. My sweet wife, endured... Our 30th anniversary was the day that I was diagnosed.
PM: So she's endured that in many other things and has noticeably rocked. My children have experienced this in a hard way and their spouses and significant others, but they've also seen me vital and strong like you see me tonight and I wanna feel that way in my life. I wanna be who I need to be. But I also know that salmon swim back to headwaters for their offspring. So I consulted the offspring and gave them a little version of my story and here were their responses. My youngest son said, who by the way, currently is in his far away ocean location of London and has been throughout this entire spot, serving a mission for his God returning home this month. Here's what the youngest said. He said, "Dad, you lose the wonder if you just continue in wonder."
PM: Sweetly, my oldest daughter said the words, "Dad, perhaps it's in your story, the why we are here for all of us and we need to learn." And I believe she's right. I've never felt to lay down in the ocean and die there nor pursuit of the headwaters and never return back to the ocean. I want to go back and forth and back and forth. Perhaps the hardest one came from my middle son, because it was a compliment and those are hard to take. Who said, I'm grateful that my dad's not swimming some one last crazy swim as fast as he can trying to get things done. His life has been the swim that he was meant to swim. I don't know the answers, I don't need to know all of them, but I do know that the experience of being with you, with friends, with family, with seven other gifted individuals who I hope you'll listen to tonight and be a changed person from listening to them, I am from having done so. It's the journey that's truly mattered. So while I can't give those answers, I will say to you from one kilt to the next, enjoy the journey. Thank you.
Michelle Brown: I haven't watched all the Mission Impossible movies, but I was like, my job is kind of like mission impossible. So I think it would be kind of interesting. So I did see the last one though. I am gonna tell you a birth story, but the first thing that I want you to know about me is that I love my only child and I have absolutely no regrets whatsoever. So as someone who designs for a living as a fashion designer, it only made sense for me to design my own personal preservation plan before my child and I met. So I had been seven years into my marriage and living in New York City with roommates when I found out that my ovaries worked. And I was really surprised, I was very shocked to find out that I was pregnant. And I know that sounds a little bit complicated and you know, it kind of was because my husband was living here in Utah and we would... He was actually going to university here, and we'd go back and forth and visit each other every so often.
MB: But ultimately I refused to leave my New York career. And if there's anything that working in corporate fashion in New York City taught me, it was that the first design of my self preservation plan was going to be my silence. I know it's so sad that I had to come to that conclusion, but that was the circumstance that I was in. So looking back into it, I did not know how to really move forward in this situation that I had ended up in. And I was happy about it, but I also knew I had to be smart about it too in the position I was in. So what I ended up doing was, figuring out a way that I could really keep a good head on my shoulders and still like be really good at what I do, but all under the radar. So my pregnancy was going to be on a need-to-know basis and my employer did not need to know.
MB: So I marked down five months on my calendar where my pregnancy just needed to be completely undetected. And my goodness, did it pay off? Because let me tell you that when my employer found out that I was expecting, my boss, who was a woman at the time, unfortunately took the opportunity to completely berate me personally, attack me about how little I must care about my career. And it's almost as if I saw that coming the entire time, which is completely why I concealed it. But alas, my self-preservation plan, the corporate edition was an ultimate success.
MB: So after I left New York and came here in Utah, I was probably about six months along at that point and no longer working, but I remember just it dawning on me. I had just been so used to concealing every aspect of my pregnancy mentally that I was like, oh my gosh, I'm pregnant and there's a baby who's going to be coming really soon. And so even though my mind had not caught up with my body, I was like, okay, this is really happening. So as a designer, what we do is we'll design with the materials provided to us. And so I quickly found out that I would not be designing with health insurance or a traditional hospital because every place that I would call could not give me a quote on how much this whole birthing a human thing costs. And that was really confusing and surprising to me at the same time.
MB: So I was trying to get creative with what I was going to do, and I thought back to all of my prenatal health checkups in New York and all of my examinations, and each time I came back with a really clean bill of health. So I was like, okay, well what if... I mean, there's this whole like thing for at home births or birthing centers, maybe I should try that. Maybe I should figure that out because they would quote me what the costs would be. And so I decided to move forward in that direction and ultimately chose a birthing center out in Lehigh. And so I'm probably about a month along at this point, and I'm really just starting to worry about like my whole plan to begin with and just how I'm going to proceed. And so thinking about it, as a Navajo woman, I know that American Indian and Alaska native women are two times more likely to die as a result of pregnancy related causes.
MB: So that really started to freak me out. And that statistic is based in comparison to white women and my grandmother who, I never met, had actually died on the Navajo reservation during childbirth. So this to me was not just another statistic, this was my family history. And so I became more concerned about making sure that all of my records were in one binder and my home, and that my house was in order in the event that I would not be making it back. And so there was no me like purchasing, like child stuff. I think I was delaying a lot of things, almost refusing to recognize this is really still happening. And I was really lucky that I actually bought a car seat three days before my child was born. So luckily I got that down. And I just remember laughing so hard to myself at 4:00 in the morning the day after Labor Day because my water had broken, and I had this running joke that it would be so hilarious if I were to go into labor on Labor Day, and I was only wrong by four hours.
MB: And technically it was like two weeks early, which that's why it was a joke. It wasn't supposed to happen. So that was really hilarious. But I will say that it is remarkable what it felt like and what I went through to give birth to a human. And I mean that in the most painful way possible. Yep. I felt everything. So, it was really interesting to see that my instinct and my personality was intact the entire time down to when my son finally made his way out. And the nurse hands him to me with congratulations. And I just grabbed him and handed him to his dad because I was not anywhere near, physically or mentally ready to meet this new human. I, from my research, knew there was still so much that had to happen. I knew that this was just the first birth and technically I would have to be assisted in birthing my placenta. And of course, every human's nightmare and designer, a tear. And we're not talking about fabric here. Yes, it happens. So as I watched the nurse thread the needle in true fashion, I just stopped her. And I just thought, okay, I'm totally at her mercy, but I have to ask her, what is your experience with sewing?
[laughter]
MB: And she responded back that she had experience with quilting to which I was pretty satisfied because if the women who quilts, they know how to put a pattern back together. So after that portion was like done, I felt ready to meet my son, who was very quietly waiting with his dad. And I remember there was just like no tears. There were no like dramatics. It was just, I looked at him with just complete wonder and it was mostly like, wow, what the heck just happened? It was nothing like what I had expected. You see, I had this really romanticized idea of what this moment would be like and this romanticized idea of what it would mean in this moment to be a mother who just gave birth. And I realized that leading up to all of this, it was not at all what I had been told it would be like, or how it would feel like.
MB: And I think that was some of the most amazing, teaching moments that I had in that time of just like, everything dawning on me of like, oh, it unfolded this way, but you know what, that's okay. And so from there, I started to think a little bit deeper about all of what I had gone through, leading up to this. And I realized that I also just did not... I did not plan for this part of my, like, self preservation, like this whole part. And in those moments, looking at him, I acknowledged that this was some of the hardest, moments of my life that I had gone through. And it was mentally taxing. It was some of the most lonely times that I ever had in my life. And it left me feeling more empty than full looking back at it.
MB: But I am so grateful that I allowed myself to even just feel that without assigning it any kind of like guilt or shame that I just allowed myself to go through that and not feel bad about it the way that it unfolded. And I feel like even though my birth story was a very un romanticized version, this despite what I had been told by society or my previous religion or anything like that, that it was okay. And that ultimately I learned that, motherhood is wonderful, although I don't think it was completely my destiny, and though it happened, I'm still a mom. I'm still navigating this thing called parenthood. And ultimately I found that my worth and my worth is just not defined by my ability to procreate or not. It comes in so many different, ways. And I noticed that my worth is really more defined by my collective choices in life ultimately. And I was really just happy and proud about that. And it was such a wild ride. Even though it was all difficult, I feel it was ultimately a success even though I came from it at a completely different angle than what I was expecting. And I love my son and I'm really grateful for him and for all that I had learned from this experience. However, I will not be doing that again.
[laughter]
MB: Thank you.
Liz McLaughlin: So I started my nursing career in the surgical ICU, and I knew from second semester in nursing school that SICU is where I wanted to work. I fell in love with how fast paced it was, that it was protocol based and I could use my critical thinking skills. And I loved that we made the impossible possible. It's pretty incredible the things we do at the bedside to keep people alive. Things like opening bellies, opening chests, even dry icing, a patient's leg. I could stand up here for hours telling you stories about the life of an ICU nurse, but they only gave me 10 minutes. So I decided I was gonna let you in on a little secret. There is a haunted room in SICU, things that can't be explained, like call lights going off when there isn't a patient in the room. Now, I'm not here to discuss if ghosts are real or not, but what I can tell you is that ghost stories are real.
LM: Excuse me. I wanted to share with you a few ghost stories, real life ghost stories that happened to me when I was a bedside nurse. My first ghost story is a patient that we admitted who had an internal defibrillator. He had a history of v-fib, and the defibrillator would shock him out of this unsurvivable rhythm. However, on this day, he was going back into this rhythm, and so he was being shocked over and over. The medical team told him what his options were, what the treatments could be, and he decided that he had lived a long life at 96 years old and that he just wanted to turn off his defibrillator and go happily with his family around. So his family and his cute 86 year old girlfriend comes to the hospital and they had a party in his room. They really celebrated his life.
LM: They told stories, they laughed. They had non virgin drinks. His girlfriend even crawled into bed and snuggled with him. When the party was over, the team came in and we told him that we were gonna turn off the defibrillator, though he would stay in this unsurvivable rhythm and eventually pass away. After he flatlined and the doctor declared him dead, we gave family their time to say their goodbyes, and when they were done, they were gathering up their things and the patient opens his eyes and he says, is this heaven? And then he sees the nurse and says, you said I was supposed to die. We were shocked. He came back with a heart rate of 20 with a very low blood pressure. For those that don't know, people don't survive with a heart rate of 20 and a low blood pressure. But this patient did.
LM: He actually survived for two more days before he passed away. My ghost story number two is a young trauma patient that we admitted he was in a really bad car accident and he had a pretty significant code. We did chest compressions on him for a long time, and there was actually a period of time though we could not oxygenate him. He had turned as blue as our scrubs. The team even questioned if we should keep going because we knew the longer we went, the worse outcomes that he would have due to not having oxygen to his brain. But we decided he was young and we needed to do everything we could. And we did. We resuscitated him and stabilized him. Now, he was on full life support, and we realized that our worst fear came true. He was not responding to any stimulus, including pain.
LM: He did have a pretty bad brain injury from not having oxygen to his brain. So four days later, we were shocked when we heard knocking coming from his room. We walk in now he has a breathing tube in so he can't talk and he's restrained, but he had been knocking on his bedside rail and he gestured that he wanted to write. We gave him a clipboard and a piece of paper, and he wrote down, I saw my dad. We kind of brushed that off and said, okay, yeah, but you were in this terrible car accident. You're in the ICU. And we eventually get that breathing tube out and he points to the doctor and he says, you were the one that said I was gonna be toast, which is exactly what the doctor had said during the code. The patient went on to tell us that he had this entire out of body experience.
LM: He said that he was above his body during the code, and he told us everything that happened. Then he said he was sucked into the waiting room where he saw his wife and grieving kids. And then he saw his dad over in the corner, and he said he was so excited to see his dad because he had passed away years before he went over to give his dad a hug. And his dad stopped him and he said, no, it is not your time yet. You have to go back. At which time he said he was back in his room and he got back into his body. I wanna introduce you to my third ghost story. It was a night shift. I admitted a patient into room four. Now, to protect their privacy, I have changed their names. So we'll call this patient D, I get him set up on the monitors, we get him kind of tucked in for the night, and I'm out at the nurse's station with some fellow coworkers, and I hear mumbling coming from the room.
LM: And I walk in and I say, D, what are you doing? Who are you talking to? And he points to the wall and he says, I'm talking to Roy Smith. Now D and I are the only people in this room, and I feel the hairs on my arms and the back of my neck stand straight up because Roy Smith, the person that D is talking to, was the patient who had passed away in that room hours before we admitted D. I walked out of the room and I told my coworkers, you are never gonna believe what happened. Now, I can't explain what happened during these ghost stories that I've shared with you, but I know they've happened and they sure make me wonder. Thank you.
[applause]
Katty Youd: Hello everyone. Hi, my name is Katty and I have Dermatomyositis. Can everybody say that with me please? Dermatomyositis. I know, I know. It's a struggle and it's also a struggle to go through. This is my story. In May of 2015, I went on a run with my brother, and afterwards my arm started to hurt and so did my thighs. I actually had an event to go to the next day, and I had to cancel it because I was very sore and I was tired. And as the days went on, weeks went on, it started to hurt. I was more fatigued. I couldn't really get outta bed. It started to become a herculean effort to go from my parked car to my university classes.
KY: I just didn't know what was happening. I was in and out of ER, like emergency rooms. A lot of the doctors would be testing me from Lyme disease or muscle dystrophy. They even took a muscle biopsy to see what's going on. And as many of you may know, that along the road to a diagnosis can be long and arduous. And mine was no different. I was getting weaker and weaker. I couldn't lift my arms to brush my hair or just play the piano, which is right here, right? And soon I was taken, with my family to Peru to see some specialists there. And when I came back, I was no longer able to walk. It came to a point that it also got really tiresome to chew because my esophagus was getting weaker, so I couldn't eat a lot. I still remember the day that I couldn't swallow anymore.
KY: I was very thirsty. So I asked a family member to give me a cup of water. And as I took it, I immediately started choking, coughing, and I started to tear up because I was so thirsty. I felt like my heart was about to come out of my chest. In a frenzy, I was taken again to the emergency room. They inserted a feeding tube and took me up to the University of Utah Hospital. And it was there that I was diagnosed with dermatomyositis, which is an autoimmune disease in which a muscle inflammatory disease that essentially the immune system attacks my muscles.
KY: I was given so many treatments, steroids immediately put into therapy, occupational therapy, physical therapy. I was also given one of those wonderful hospital room jug. You know what I'm talking about, the ones you take as a souvenir when you get home. You know what I'm talking about. You know what I'm talking about? Yeah. So I was given those and I did not use it to drink. Oh, no, because my esophagus was weak and I couldn't swallow. I also couldn't swallow my spit. Now, this is something that I didn't know, but we're constantly swallowing, like subconsciously. And since I couldn't do it, I had to spit into this jug. I know. So gross. But it was my reality and I couldn't sleep because of it. I really quickly started going into a dark place. I remember that they had to insert a PICC line in me on this side because it was going to be a prolonged stay at the hospital.
KY: And the day that they were trying to insert it, they couldn't find a vein. I know it happens. And I was just standing there, almost spacing out. And I looked up and I saw my mom across the hospital room, and she was bawling, which made me cry. And I didn't want her to see me like this. So I asked for the healthcare team to usher her out of the room, but she wouldn't budge. And so we're both there just crying. And of course, yes, it hurt, but because of them trying to find a vein.
KY: But it... And also, this wasn't the first time we have been overwhelmed with this entire ordeal, it was more than that. Her and I, we locked eyes and we were connected and we started to reminisce on everything that has happened since it started. Her and I have lost our jobs, I stopped going to school, I could not help in the informal translating or interpreting in medical settings as I usually do because I was the patient this time. We both couldn't sleep. My whole family has gone through a lot with this ordeal and in the future months that would come, we would eventually lose our house because of the stacked medical bills that would come. My mental health was deteriorating and I knew I had to leave. So, we asked the medical... The team to see there was a way to do this at home, and they highly advised against it. They said, and I quote, that, "I have everything I need here, and if I were to go home that it would cause irreparable mental damage." I understand where they're coming from, their expertise and their experience, they want what's best for the patient. And, not but, and I would want them to also trust me as the patient. The patient being part of the healthcare team, knowing that this is something that, at least for me, I needed this, I needed to go home.
KY: And so with that, we worked something out and I was able to get care and recuperate at home. Now, it wasn't easy. Okay? My family and my community really came together to help me the following months to continue the therapy. I would practice on teaspoons of water and... Because I fear aspiration and so did everybody else around me, I would it really slowly. I would also practice with apple sauce and bananas. And now that I'm in remission, if you're wondering if I eat apple sauce and banana to this day, rarely. I am so sick of apple sauce and banana so you can imagine how it was teaching my kids solids. I'm like, "Yes, apple sauce, so good, yeah, you can do it." And I also would get a lot of comments on my body too, "Wow, you look so good. Wow, you're looking really skinny. Hey, at least you look good." And to combat the notion that thinnest equates to optimum health, I did it the only way I know how, which is sarcasm. So I said, "Thank you, it's the feeding tube diet. I highly recommend it." And I'm not saying that I prefer my body one way or the other, absolutely not, but I am just in awe of what my body has gone through medically, through this autoimmune disease, the... Birthing two children since.
KY: I know there's some things that I still can't do, things just don't bend certain ways, I'm still recuperating in a lot of ways. But I honor her still because my body is a wonder and your body is also a wonder. I want to appreciate and celebrate every season, every size, every reason. And I know that as the years go by it will also just keep on changing and evolving. I am still in shock of the day that I officially was able to swallow again. It was later into that year, and by that time I could take a couple of steps and my speech therapist, was saying, "Okay, it seems like we're good to get an official testing done. Let's do it. We're going to go ahead and bring the test to your house." And I said, "Oh okay, I don't know what that looks like." He said, "It's just outside." So my brother helped me out and walked me to the door and outside of my house, and there was a big black van. I had no idea that you could do this, so this was all new to me, and they said the machine was inside. So I went inside and there was other healthcare professionals there as well, and I sat down, and they gave me some water and they also gave me, yes, some banana. So I ate a little bit of that. And I saw the machine on my side and I could see it go down, and I was like, "Oh, okay yes, I can definitely do this."
KY: And then one of the healthcare professionals gave me a pill, it was this big. And I know from where you're sitting, it probably doesn't look that big, but for somebody that hasn't been able to eat for a while or swallow, it was ginormous, and I looked at the health care professionals and I said, "Do any of you know the Heimlich? Because you're gonna need it. Also, why don't we delay this? I would love to welcome you back another day because I definitely don't wanna do this." I was so scared. And I grab some water, I looked at the machine, and I attempted to swallow and it went down. I didn't choke, I didn't cough, I was able to do it fully. I was so impressed with myself, I was just in shock. My speech therapist looked at me and said, "Yes, Kathy, you did it. How do you feel?" And I literally had no words, I was just sitting there, just in awe of what I was able to do, that I wasn't able to do for so long. And he said, "Well, now that you could do that, what do you want to eat or drink? I know some of... Most of my patients actually ask for a diet Coke. Do you want that?" And I said, "Nah, I want a Slurpee." Thank you.
[applause]
Kerry Magiske: It was August of 2022, just about 10 months ago. My husband, Mike, my 13-year-old daughter, Kira, and nine-year-old son, Tristan, were in Costa Rica, celebrating my graduation from the University of Utah Doctor of Nurse Practice Program. I was a nurse practitioner. We had spent many family vacations at the beach, and on this vacation, we were at Manuel Antonio National Park. I had grown up in Hawaii, on the north shore of a O'ahu. Mike and the kids and I had spent our vacations playing in the waves and diving under the waves at Pounder's Beach in Laie, diving off the lava rock into Waimea Bay, or swimming at the beach across from my parents house, the house that I had grown up with in Punaluʻu. And now we were at the beach in Costa Rica enjoying the waves. The skies were grey, but the weather was warm, we were having a great day. Smiles all around, salt on our lips. We were having a contest to see who could body serve the farthest up the beach. So in body surfing, you don't need any equipment, it's just your body gliding through the waves. Mike took the next wave in while the kids and I dove under it. We got up and turned around to see how far Daddy made it up the beach.
KM: Sure, he was trying to win the contest and to get farthest up the shore. It took a while for Mike to pop up, but then we saw him, his head popped up out out of the water, but suddenly his head went immediately back down under the waves. Something was wrong. The kids and I ran through the shore break to Mike, he was tossing and turning in the waves, he could not move. The kids and I pulled his body through the shore break onto the shore, screaming for help. We got to the shore and Mike mouths, "I can't breathe." In all my years training as a nurse and as a nurse practitioner, I had gone through many first aid and CPR trainings. We learn what to do if a patient is having a code or if you're out in the community and that... You see someone who needs help. But never once was the scenario, it was your husband who couldn't breathe with your two kids watching just feet away. Mike couldn't breathe. I provided rescue breathing for Mike for 35 minutes. Finally, finally, the emergency services arrived. In the course of five days, we were in three different Costa Rican hospitals. My medical training had taught me enough that Mike's injuries were serious, but I was also incredibly hopeful, Mike's a fighter. On the fifth day, we finally made it back to Utah via air ambulance to the University of Utah Hospital and the neuro critical care unit.
KM: The day after we arrived back in Utah, we had a meeting with Mike's medical providers. In that meeting, my worst fears were confirmed. Mike had suffered a severe spinal cord injury, he was now paralyzed, a quadriplegic. He was on a ventilator as he was unable to breathe, and he had a severe case of pneumonia. On Mike's last day, exactly a week after his injury, there were no final breaths... There were no last breaths to take, he couldn't... There were only final beats of his heart. I had promised Mike that he wouldn't be alone, and I had promised the kids, and he wasn't. By his side, I lay, just Mike and I. He was finally at peace. No more hungering for air. His body was being freed, free as a bird. Free Bird, his favorite song. It was our last cuddle and our last embrace, as death did us part. I had walked into that hospital a wife, and I was leaving a widow. I was truly at a total loss, wondering how would I... How would the kids... How would we ever be okay? How would we ever move forward in life? In the months since Mike has died, I have gone to a lot of grief and trauma counseling, and one of the things that I've learned about are grief bursts. And grief bursts are sudden burst of emotion that may occur unexpectedly or in response to a special memory or situation.
KM: I experience a lot of these. But one thing I know, although these outbursts of emotion are physically taxing and mentally taxing, they also give me an opportunity to feel a little better. A few months after Mike died, I was at the gym exercising and lifting weights, it had actually been a pretty good day. I went to the grocery store, I took out the trash, and I exercised, all in the same day, which was something that would have been really difficult to do just weeks before. I was listening to my 90s R and B Spotify playlist when a Mariah Carey song comes on, We Belong Together, a love song. The tears start streaming from my eyes and staining the black gym floor, I quickly sit down on the weight bench and I look around to see, has anyone noticed my outburst? I try and turn off the song and finally I quiet Mariah. And in that moment, I have two choices. First Choice, I quickly gather all my things up, race out of the gym, go into my car, turn Mariah up really loud and just cry and feel my sorrow in the moment. Or I could stay, finish my workout, go back to feeling the burn in my biceps, knowing I'll feel a little bit better if I finish the workout. And on that day, I decided to stay. But no more 90s R and B and Mariah Carey, it's time for some 90s rap. Alright. And the sounds of Ice Cube, Today Was A Good Day, to take me through the rest of my workout.
KM: On another occasion, just about three months ago, I had the opportunity to interview for a teaching job at the U in the department of health and Kinesiology. As part of the interview, I was to give a presentation in a functional anatomy course to a group of undergraduate students as luck or misfortune would have it, the topic of my presentation for the week that I chose was the spine and trunk. Okay, so I prepare my presentation. Before I give my presentation, a friend agrees to meet me in the lecture hall to practice. On that day, I walk into the classroom door and again, the tears start to fall. I can't believe I have to present on the spine. I can't believe that my husband is dead. I am so tired, and I just want life to be normal again. And on that day, I choose to feel all my feelings, to be sad, to feel my grief, to feel my sorrow. Exactly a week later, I return to the same classroom to give my presentation to about 50 undergraduate students, as well as faculty in the department. And on that day, I'm excited, I feel confident, and I did not, thank goodness, shed a single tear. Because I had given my chance to feel my sorrow and my pain and feel all the feels the week before, I had given myself an opportunity to have a good day. And in case you were wondering, I was offered the job and I accepted.
[applause]
KM: Yes, thank you. So, in the months since Mike has died, life has been really hard. There's nothing that could have prepared me for what it's been like, to go through Mike's injury, his death, our grieving process. The kids and I have had a lot of firsts these last few months without Mike. First days of school, first rock climbing competition, first baseball games, holidays, and we still have a few more firsts to go. First Father's Day. Mike's 50th birthday. The anniversary of his death. But despite our grief and despite how hard this is, I stand before you today, and my kids sit amongst you today, and we are doing okay. We have been surrounded by the love and support of so many people that care for us. We go to counseling, I drag the kids on long walks and hikes, and we remember that we have so much to live for, there's so much that we wanna accomplish in life. And Mike would tell us to follow our passions, and he'd tell us to go big, to send it. There's one thing that my son has said to me that still resonates with me. One day he said, "Mom, I can't believe that everyone, everyone in the whole world will lose someone that they love, and this is what it'll feel like, this is what they'll go through." But I want you to know, when it's your turn to lose someone that you care about deeply, you too, you will learn to be okay, and you too will have good days. Thank you.
[applause]
Ivan Vazquez: I would like to start by reading an email that I sent out to my entire team a couple of years ago on February 9th, 2021 at 4:22 PM at the very end of my shift so that I could run out of the building as fast as I could the second I hit send. And I think you'll understand why in a minute. Unfortunately I don't run as fast as I would like. But, here we go. Hello, I wanted to update everyone I work closely with on my name change, so that there's no confusion in clinic. As some of you know, I began medically transitioning a few months ago, and although it is not yet a legal name change, and my epic notes will still display my old name for now. In clinic, I now use the name Ivan with patients and staff. He/him pronouns are also appropriate. As far as patients are concerned, it is likely that I will not always be addressed correctly, and my preference is to just let that go. These are brief interactions, and there's no need to take the focus off the patient visit over a simple correction. Same goes for everyone else. I understand these things take time to adapt to, and it's not a big deal if it takes some time for the change to stick. If anyone has any questions or concerns about this by all means, feel free to ask. I can't thank you enough for your support thus far. The next few months may be a bit awkward and vulnerable for me, but it's also pretty wonderful.
IV: Admittedly, the whole experience is very humbling, and I appreciate the lengths you've all gone to, to be supportive and make me feel safe in all the ways that count. Not everyone in my position is so lucky. You guys are the best. Sincerely, Ivan, formerly Ilya. Ilya Tomaravaskis was my name for 41 years. And I know it is not customary. For people in my position to share the name that we were given at birth. It's generally associated with a lot of trauma, a lot of discomfort, and a life that we very much wanna leave behind. But there's two reasons why I'm sharing the name with you tonight. Reason number one, I didn't transition until I was 41. So I have all these memories, some of them really hard, but a lot of them really wonderful, as Ilya. Ilya made me a mom. She is my heart, she is my conscience, and she is the driving force behind the kind of man that I am trying to become. And I wanna honor her by speaking her name.
IV: Reason number two, I am terrified right this second. If my voice is breaking and if my hands are shaking, it is not stage fright. It is fear that I won't be accepted because of the things that I'm gonna share with you tonight. That I might be ridiculed in ways that I have been before. And that is intense. But more than anything, I am hopeful that something I have to say will resonate with you, not as a transgender man, but as a human being. And I'm not completely sure why, but after thinking about all that, I just thought you guys ought to know that name. Obviously, it has not been an easy road getting to where I am today.
IV: I'm about three years into my medical transition, and I still haven't a clue how to be a man. I keep trying, and for the life of me, I cannot figure out how to tie a necktie properly. It comes out crooked every single time. It is too dark in here for me to be able to tell if any of you have one on, but if you do, kudos for figuring it out. I have wonderful friends. I have the most amazing inner circle of friends. And they are predominantly women. Strong, amazing, resilient women. And I am lucky to have them in my life. But I really want a bromance.
IV: It feels like a rite of passage that I'm very attached to, but you can't exactly go up to the average guy and say, hi, I am Ivan. Cinderella is my favorite movie. I'm totally stoked about The Little Mermaid. I know very little about sports. Will you be my best friend? Life does not work that way. I wish it did, but it doesn't. So obviously, there's a lot that I have to figure out. I am still doing way better than I was doing in the beginning.
IV: For some reason, after I first changed my appearance, I got it into my head that the only way that I could look handsome was to walk around, not smiling, looking completely serious. And I thought that would add up to manly for me. In retrospect, I think I may have gotten it from the movie Zoolander. And it wasn't until I started getting texts from concerned coworkers asking if I was in some sort of distress or angry over something that I realized it was not working for me. And so I course corrected, and now I smile all the time.
IV: I am very lucky to have the coworkers that I have who were brave enough to tell me these things that I really needed to hear. And I knew, I knew going into this, that I could count on support from my team. I had been through other really hard, unusual things before, and they were there for me, and I had no doubt that they were gonna find a way to be there for me now, even though this was so completely removed from their comfort zone.
IV: Patients, on the other hand, were a different story. I wasn't sure what I could expect from them, and I'm the single parent of a special needs adult, and so professional safety was really, really important. And in order to keep myself safe and give myself a better chance at passing as male in the early stages of my transition, I decided to do something that I had never felt the need to do outside of a professional environment. I started to bind. Binding involves using compression clothing to minimize the more prominent aspects of the assigned female at birth body type. And it works really really well. It did, in fact, help me pass as male, but it also made it really, really hard to breathe.
IV: Every time I put one on, I just felt like I was breathing through a straw, and it was really uncomfortable. But I thought to myself, like, okay, what am I gonna pick here? Am I gonna pick breathing, or am I gonna keep myself emotionally safe, professionally safe, and potentially, because sometimes it's an issue, physically safe? And so for me, at the time, it made sense to start binding during work hours. Thankfully, that is not something I feel the need to do anymore, and the reason why I no longer do it is because of a really unexpected patient encounter. It happened at the height of the pandemic, and if any of you happen to work in healthcare, you might remember that we were all... We were not doing okay. It was a really hard time. We were short-staffed. We were sad and scared, and one particular day, I had had it.
IV: If I had been independently wealthy, I would have quit, but that is not the case, so I had to find a way to make things easier for myself for the rest of my shift, so I knew that the only thing I could do was to take off my binder. I went to the bathroom. I looked at myself in the mirror. I had a very heated conversation with myself. I used a lot of special language that I will not use here tonight, but if any of you happen to be SpongeBob SquarePants fans, you might remember the term sentence enhancers. I used a lot of those as I worked up the courage to leave that bathroom unbound as a visibly transgender man. Eventually, I did it. I worked up the courage. I ripped off my binder. I went outside. I threw it in my locker, and I went on about my day, and the next patient was the one who completely redefined the way I approached my transition.
IV: It was a young woman, and her daughter, the daughter, happened to be the patient, and I called them back, and within minutes of me getting them into an exam room, they had given me so much information. The pandemic had hit them really, really hard. Job loss, health issues, some really interesting family dynamics that I will not get into here, but because she had shared so much information about who they were, I also had enough information to know. This family did not come from a world where people like me are accepted, so I was ready for whatever was coming my way.
IV: I think if you work healthcare long enough, you understand that people are coming to us in a really bad place more often than not, and generally, they are not in a place to give us the best version of who they are, but we are committed to give them the best version of who we are. That is something that I take very seriously, not just in my professional life, but in my personal life also, and so I was waiting for something to go down, but as I'm moving through the workup, and I'm getting ready to put dilating drops on this young girl's eyes, she starts to panic. She got hysterical, and then the mom turns to her and says, it's okay, honey. This young man is so sweet. He is being so kind. He is thoughtful. He just wants to help. He wants you to get better, and my jaw dropped. I was not prepared for that. I pass really well now, but back then, I did not, and I had just removed the only article of clothing that I had that was helping me to pass. The only thing that I had left was my employee badge, which does say he, him pronouns, and the mom did notice, and that much had been obvious, and I wasn't ready for respect at that moment from that patient, and it just, it blew me away.
IV: If you are familiar with some of the unfortunate rhetoric around people like myself, you might understand and appreciate why hearing the words, he is so kind, he is so thoughtful, he is trying to help, would have affected me the way that that did. I left the room, and I gave myself a few minutes to process, and I thought to myself, wow, from this point forward, if I never put that thing back on, everyone that I interact with will know that a man could look like me, and that a man that looks like me is worthy of respect, and that a man that looks like me might actually be there to help, to make you better, to make a difference and I realized there was so much power in not hiding, in facing the world as a visibly transgender man, unbound, and I wanted that. I wanted that for me, I wanted that for my community, and beyond my community, I thought about the benefit to the patients that we serve.
IV: Sometimes it is my experiences as a woman that help me connect with patients. Sometimes it is my experiences left as a man that help me connect with patients. I don't have the luxury of time, so I don't get to tell you all the complexities of the interesting life that I have had, but I can tell you that I have been a daughter, a sister, I have been the doting wife, I've been a mother, I have survived homelessness, I have survived domestic abuse.
IV: A lot of people are surprised when I talk about the marriage that I left behind. They assume that I left my marriage to embrace this life that I have now, this beautiful, wonderful life that I love. That was not the case. The last day that my husband spent at home with me and my son, I had a fight him off with a broom, a cheap, surprisingly sturdy dollar store broom.
IV: My ex-husband grew up in a very unhealthy, traumatizing environment, and that added up to him being emotionally abusive when we were younger, eventually physically abusive as we got older, and he was not safe to be around. And so my marriage had to end. That broom still stands by my front door. I've moved a handful of times, since my marriage ended, and I will keep that broom by my front door for the rest of my life, as long as it is standing, because it makes me feel so safe. And it reminds me of everything that I have fought for.
IV: When you've had a life like that, it changes you. At this point, having lived through these things from both the female and male perspective, there's no one that I can't relate to. There's no one that I don't understand or have compassion for. And I thought to myself, wow, this is such a helpful tool in healthcare. This is such a great way of me connecting to patients, and it's absolutely worked out that way for me. I've had grown men sobbing in my exam chair upon finding out that I was transgender, because all of a sudden, they felt like they could tell me things that they couldn't tell anyone else. And that was powerful. That led to better healthcare for our patients. And that is something that I want to continue. It just felt like the most wonderful gift. The last thing that I wanna say, I want to read directly from my notes, because I'm over 40, and I can't remember things the way that I would like to.
IV: And I was so alert, and it sounded really catchy when I wrote it, so I wanna make sure that I get it right. Sometimes, in the midst of hardship and setbacks, if you can look around and see just one thing, one moment, or one person that you can see love and beauty in, one thing that lets you breathe, like that patient encounter did for me, like this moment is doing for me right now, because this is actually the first time I have stood in front of an audience as a man. So thank you for sharing that with me. It gives you hope, and I hope that moment finds you all. Thank you.
[applause]
Susan Madsen: Good evening, everybody. I'm excited to be here tonight and to tell you this story. This just happened to me this past January. I was binge watching one of my favorite British TV shows called 24 Hours in the A&E. It's a documentary type show where they film for 24 hours in an emergency room in London. And in the show, they bring in a patient. His name is Mark. He's about 32, 33 years old, and he's had a seizure, and they're gonna try to figure out why he's had this seizure, but as they bring him in, and it's in the middle of the night, I'm watching this, I look at him and I think, he looks like my brother Ethan.
SM: Let me tell you about my brother Ethan. My brother Ethan was born in 1973, and he just turned 50. We had a big birthday party for him. When he was born, my mother knew that something wasn't quite right right away. She tried to nurse him, and he couldn't nurse. He didn't have that innate ability to nurse like most newborns have. So medical tests started to be run, and a bunch of tests were run as a newborn and as he was a young child, trying to find a diagnosis for him. And my parents finally called for the medical tests to stop. They felt it was only harming him. Nobody was finding any answers, and they had put my parents in a medical debt of around $20,000. Now, I calculated that in 2023, and that would be about $139,400. So that's a lot of money. That was a really financially hard time for my parents.
SM: So we just thought that Ethan was his own unique disability. And one of the heartbreaking parts of this is that my mother blamed herself her entire life, she thought that it was her fault, that she had caused it. And that always broke our hearts that that was the case. So now back to the show. They bring Mark in, and Mark's parents come into the ER. Mark's parents' names are Ian and Leslie, and they start talking about Mark when he was a baby and when he was a young child. And there are more similarities to Ethan when he was a young boy. There are things that are mirrored, and I'm just fascinated by this. I'm just in awe that I'm seeing this. And some of the things they say are that Mark reacted very negatively to food and to feeding, and Ethan experienced that as well. And that Mark was really sick as a baby and as a young child, and Ethan was very sick as a baby and as a young child. That Mark was delayed in learning to walk and to talk, and Ethan was delayed in learning to walk and to talk. And so this was fascinating to me.
SM: And then a nurse comes in and brings Mark a paracetamol to take. That's British for acetaminophen. I work in pharmacies, so I know. And Mark's having a hard time breathing in this show. So they pull his oxygen mask down, and the nurse gives him a cup, and Mark takes a hold of this cup, and he has Ethan's hands. And the way he holds the cup is the way my brother holds a cup. The way he swallows is the way my brother swallows. The way he breathes is the way my brother breathes. And my head explodes.
SM: I can't believe what I'm seeing. And the next thing that happens is Mark's mother starts to talk about their pediatrician and how they had a very bright and intelligent and determined pediatrician who really looked through a ton of textbooks and observed Mark and finally diagnosed him with a very rare genetic condition called Noonan syndrome, which I had never heard of. And I'm in awe of the show, and I think, did I just discover my brother's diagnosis after 50 years? And I want to call my mom and dad so desperately, but they're both deceased, so I can't call them. And it's like 3 o'clock in the morning. I have nobody to call. I'm just wandering around my house in this wonder and awe of what I just watched. It was awful. But what I do do is, as soon as possible, I make an appointment for him to have a test done and make an appointment with his primary care doctor here at the U to have a test done to test him for Noonan syndrome.
SM: Personally, I didn't need the test. That hand holding that cup was the test for me, but no one would believe me, obviously. But my sister and I go with the doctor to the doctor's office, and he agrees to test Ethan for that. He said the test would take three weeks to come back. It took a week, and the test came back positive for Noonan syndrome. Now, it might seem strange as siblings, and there's five of us total, Ethan and then the four siblings, that we would be overjoyed with this diagnosis. But we were, because knowledge is power, and the unknown is awful. And we were overjoyed to have a diagnosis after all this time. And so we got together, and we're gonna sit down and tell Ethan, and I was a little worried about how Ethan might take this news. But we sat down and we talked about it with Ethan, and my little sister had told him even that there was a Facebook group with, and you know, all these patients who have Noonan syndrome, and we were discussing it with him.
SM: And I'll never forget, he got a grin on his face, and then all of a sudden he said, do you mean I'm not alone? And I'll never forget that. I can't imagine what this has been like for him, to think he's alone his whole life, and then to know that he's not, and that there are others who have struggles and challenges just like he has had. And so that was an amazing moment for us in this story.
SM: A couple of days later, I'm riding home on the bus, and the thought washes over me. Oh, my Aunt Connie had Noonan syndrome. So my mom's little sister, my Aunt Connie, passed away in 1959 at the age of 12 after a heart surgery at Primary Children's where they were trying to correct a congenital heart defect. So one of the characteristics of Noonan syndrome is that you can be born with a heart defect. Ethan, gratefully, was not, but my Aunt Connie was. So on the bus, I look up Ethan's test results, and it says genetic counseling recommended. And I get a referral from Ethan's doctor for genetic counseling. That hasn't happened yet. We've made lots of phone calls, phone calls back and forth. They've said, oh, you need to call here, no, there. So if anybody has any connections on how to make genetic counseling actually happen, that would be great to know because we're really interested.
SM: This has affected, as you can imagine, our extended family. We have some answers, but we also have lots of questions. So we're still looking for the genetic counseling piece. Another characteristic of Noonan syndrome is they have darker pigmented spots on their skin, and Ethan has these on his back. So during that very first appointment we had where we requested the test for Noonan syndrome, his doctor was looking at these and said, oh, he's got a mole on that right shoulder that does not look good. That needs to be removed. So it was, and unfortunately it came back as a malignant melanoma. And then because it was right here near his armpit where we have our lymph nodes, he was referred up to Huntsman and needed actual surgery under general anesthesia where they had to remove the cancer and then a couple of lymph nodes. And unfortunately one of the lymph nodes came back with a small cancerous tumor in it. But we would never have been looking for that had I not seen this show, had Mark not decided to do this show, and we'd not made that appointment. So this experience has probably saved Ethan's life, but we're on that journey with him now.
SM: Back to the show, the doctor that's assisting Mark, they figure out what caused his seizure, is that he had a severe lung infection and pneumonia. And the doctor says patients with Noonan syndrome are at risk for severe lung infections or pneumonias. And this reminded me that three years ago, Ethan was very sick with pneumonia and was hospitalized here at the U, and at the same time, our father was dying and he was hospitalized in Ogden, and that was a really rough time. Ethan started to do a little better and was discharged, and then our dad passed away. And then Ethan deteriorated and was re-admitted and he missed our father's funeral, which was awful. And I remember being with Ethan here at the U and a doctor saying to us, "I just don't understand why he's so sick, why a young man is so sick like this." And I think back now how great it would have been to have a diagnosis to say, "He has Noonan syndrome and that's why he's so sick." And just in March, Ethan got double pneumonia again, and it was great to say, "I have a diagnosis, and this is why he's so sick." And it did make a difference, and it was better. It was great to have a diagnosis. Diagnoses are important.
SM: One of the greatest parts of this journey for me has been, I joined a Facebook group and the power of social media, it was a Noonan Syndrome Foundation Facebook group that connected me with Mark's parents, Ian and Leslie in London. And we started emailing. And that's been a great experience because I wasn't able to talk to my own parents, It was awesome to be able to talk to Mark's parents. And they shared with me some similarities that I saw in my own parents in the way they both treated their sons. And I wanted to share that they both wanted their children to be as independent as possible. They both saw the inner strength in their children. They both saw that their children had fantastic independent spirits. Both boys attended normal schools with special ED programs, and both parents are so proud of their son's accomplishments, and those things mirrored my parents as well.
SM: Then in one of the emails, we've been emailing back and forth and sharing pictures of grandchildren, which has been so fun. And then Ian, Mark's dad sent me a picture of his back garden, which was absolutely beautiful. And I'm super jealous 'cause I don't even have a back garden, so whatever. [laughter] They're amazing. But anyway, Ian shared this with me in an email about Mark's decision to be on the show, and I'm just gonna read it because it's a quote. When Mark ended up in St. Georges and the cameras were there, only one result was possible. Mom and Dad, I want to do it. There was more to it than you might think, footage from the hospital cameras and microphones, then 12 hours of filming at home, all boiling down to perhaps 40 minutes of TV footage. Mark saw the first cut of the program and it had his approval. The TV company were very good, very sensitive and gave us a choice whether to go ahead after he passed away. There really was only one answer, what would Mark have wanted? It has been a force for good, and that is what Mark's life has been as well, a force for good.
SM: Over 400 people attended our small church to celebrate his life with local shops closing for the afternoon. Not many get that, but we do miss him dreadfully. We are so grateful for Mark's amazing and courageous decision to share his story about it. Our family would still be wondering. And we're grateful for Ethan, who's with us tonight.
[applause]
SM: He's an amazing man and he unites our family in ways I can't explain. I'm grateful to my siblings and my parents and for this opportunity to share this story with you. Thank you.
[applause]
Charles Teames: On a Monday in June, roughly a year ago, I reported to the hospital at 5:00 AM for my first surgery as a third year medical student, the procedure was called a tracheal resection, and the patient was a young woman with a condition called tracheal stenosis, which is where the trachea or the wind pipe becomes scared and narrowed, it makes it very difficult to breathe, and so this procedure was going to remove about four centimeters of her trachea and then reconnect to the ends back together so that she could breathe normally again, it's a very long and difficult procedure, there's many things that can go wrong, it takes about eight hours, and so being in the operating room for a procedure like this is an experience that is full of awe and wonder for all of about 30 minutes.
CT: Because you have to understand that as a medical student, when you're in the operating room, it's just a very socially and physically uncomfortable place to be. Socially, because you're being graded, there's this very intimidating surgeon who is observing everything you do and making sure you don't mess up, asking you random anatomy questions at any given moment. And so you're just terrified the whole time, and then physically, you have to scrub in and properly have to wash your hands in such a way that you don't contaminate yourself, and you get to put on the gloves and the gown perfectly so you don't contaminate yourself or anybody else, and you go to the patient's bedside and you stand there and you can't touch anything that's not sterile, and your hands have to stay in what we call the box, your hands cannot go above the collar bones, your hands cannot go below the waist.
CT: Otherwise, if they become non sterile, you then have to de-scrub it and then re-scrub it. And it's a whole mess. And so here you are standing like this, and you're holding a retractor usually, and you're boiling hot 'cause the lights are beating down on you, and you try not to pass out, your feet are going numb, and at any moment, the surgeon can yell at you and ask you a question to identify a piece of anatomy that you can't see it because you've been spaced out for the last three minutes 'cause you're trying not to pass out. It's just not a very pleasant experience. The novelty wears off very quickly, so I show up to the operating room, I'm very nervous, we get the patient off to sleep, and the surgeon turns to me and says something that should normally be very comforting and inviting, she says, Hey, this is gonna be a really long procedure, and I always feel really bad for the medical student because you just have to stand here the whole time, so you get to pick the music today, and I immediately panic and my mind goes completely blank, and so I just say The first musical genre that comes to my mind, which is Ska.
[laughter]
CT: You don't know what Ska is, it's a musical tradition, has a rich history at borrows influences from jazz and from reggae and from punk rock, I quite enjoy it, but I also acknowledge that is a very acquired taste, the kind of taste that you can really only acquire by being a teenager who spent too much time hanging out at Hot Topic, like you know, when you show a friend a TV show and you really, really want them to like it, and it becomes obvious like five minutes in, they're just not into it. But you have to sit there for the rest of the episode, like in awkward silence, imagine that sensation. But for eight hours.
[laughter]
CT: So needless to say, I am mortified. Fortunately, nobody's implied enough to mention it, there's one particularly long and obnoxious trumpet solo during which the attending surgeon looks up at me and make the face that you make into your fridge when in the morning when you're trying to find a snack.
[laughter]
CT: One of those, despite all of this, the surgery is going fine, we have the patient's neck open, we have exposed the trachea fully, we've removed the portion without incident and the trachea is just open for all the world to see, and I'm staring down at the barrel of the gun, and the resident notices me staring and she leans over to me and she says, Hey, take your finger in there, so I do obedient-ly, and I look at her quickly and she locks size with me and she says, You don't get to do that every day.
[laughter]
CT: So the surgery goes fine, we finish up, we close the trachea securely, it's air tight, we put everything back to where it's supposed to be, and we close the neck back up and we get the patient off the post-operative recovery. When I get home around 7:00 PM, I'm exhausted and I'm just agonizing over how I had behaved, had I come off as weird, Oh my gosh, why did I pick Ska. So how am I going to avoid embarrassing myself for the rest of this two-week rotation, and then the next morning I have to go back and do it all over again, at 5:00 AM I need to report for what we call pre-rounds, which is where the medical student goes and sees the patients you operated on the day before, and if you've ever ever been admitted to the hospital and somebody came and woke you up at 5:00 AM and asked if you'd pooped? Yeah, it was me.
[laughter]
CT: That's my job, so I show up and I run to the hospital, and I got this young woman's room that we operated on the day before, and I knock on the door and I open it, and I flip on the light, and there she is sitting, bolt upright in bed, and it is obvious to me that she has not slept a wink, it is obvious to me that she is terrified and she is in pain, and in her neck, there's something called The Grillo stitch.
CT: We place it at the end of this surgery, it's a suture that goes through the flesh at the point of the chin, straight down, and then through the flesh over the sternum, and it's held thought. It is intended to be painful. It is intended to forcibly remind the patient not to extend their neck, because if they do, they could burst the stitches that are in the trachea and they would likely be immediately fatal, and so here she is with this medieval torture device in her neck, terrified, in pain, and alone, and I am forcibly reminded of a conversation I had with my father right before starting medical school, my father is a nurse, and he explained to me, Look, medicine will quickly become a job, but you have to remember that... Well, for you, it's just another Tuesday for the patient who were often witnessing the worst day of their entire life. I'd completely forgotten that. In medicine, we intellectuals surgery, maybe it's a coping skill, maybe just out of forgetfulness, but we just... We think of it as an intellectual pursuit, it requires a lot of knowledge and skill and practice a certain degree of artistry, and in the pursuit of those skills, we forget the more immediate human perspective of surgery, which is that... To the casual observer, surgery, and indeed most of medicine, is body horror.
CT: It is a terrifying and visceral experience, we had taken this person apart and put her back together again. We had disassembled the biological machinery that was keeping her alive, and I stuck my finger in it. In fact, I've been kind of bored and worried about myself the whole time. And so, in medicine, we are so prone to squeezing out the immediate emotional responses that we should have, those emotional responses that make us human. I understood in that moment why doctors are so frequently seen as cold and uncaring because it happened to me, and it hadn't taken years, it hadn't taken months, it had taken 30 minutes of being a little bit uncomfortable for me to completely forget the life that we held in our hands. And I know it's not comforting for you to hear that from a medical student, but I also feel like if we as medical professionals want your trust, we have to be honest with ourselves and with you. So I spent the next two weeks seeing this patient every morning, on morning rounds, and I got to see her recover, I watched the drains come out and the oxygen come off, and we pulled that stitch from chin to chest out and she could move her head freely again.
CT: And I got to see her get her life back, essentially. I got to talk to every morning, and she's expressed, yes, she was terrified by this whole process, but she was also just simply so grateful that she could breathe normally again for the first time in years. And that experience was more wonderful than the most complicated surgery. There's this concept in philosophy called the sublime, I think about it often. It's the combination of awe and terror that we experience when we encounter natural phenomena that are beyond human comprehension. It's different from fear. Fear causes the mind to contract, whereas the sublime, that awe, that terror, causes the mind to expand. And while it's frightening, it also reminds us that we're human, it gives us a deeper appreciation for life and the world and the people around us. It reminds us that yes, the joy that you and I feel are not the same, the terror you and I feel are not the same, but we share those emotions and they remind us that we're human. And I believe it's that sublime, those emotions, that can bridge the gap between patient and physician.
CT: In the face of the terror, but also just the mundanity of not just medicine, but everyday life, we can have compassion and empathy for each other, if we can simply acknowledge the miraculous fact that any one of us could be experiencing the highest highs and the lowest lows of the human experience on any given Tuesday. And so I promised that Tuesday, standing in that room, that I would not become numb to the sublime privilege that it is, to work in medicine and with patients. That I would not forget the human underlies, all of the skills that I have to work to attain. I'm not perfect at this. I probably will never be. I can't promise that I'm not gonna get hungry or distracted or tired when I'm taking care of you. I cannot promise that I'm going to be able to maintain a sense of wonder for all eight hours of your surgery. But I can promise that I will always remember that young woman sitting upright in a hospital bed at 5:00 AM, and because of that, I will remember you.
[applause]
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