Captivate Podcast: From Diagnosis to Determination: Nell & Dr. Maggie Kang Share Their Rare Disease Journey | EP036

Welcome everyone. Today is a very special day on the podcast, because I have two guests with me, and it's a mom and a daughter, so I'll tell you a bit about them before we get started. Dr Maggie Kang is a certified life and healthcare coach and a Yale trained physician who is also a rare disease advocate and a TEDx speaker, and I hear by the grapevine that her TEDx speech has 200,000 or more views. So that's a pretty exciting achievement for for one person, she has spoken at a number of institutions, and I'm going to put all of them into the show notes for you so you can follow up on Maggie's journey. And I'd also like to introduce her daughter, Nell Choi who is now a 16 year old teen author, speaker and rare disease advocate as well, who has turned her personal journey with a rare, incurable disease into a mission to support other people. Now Nell, I understand, was just diagnosed at eight years old, so this has been an eight year journey, which is a long part of a life that is 16 years old now. And the what started all all of this was episode in the ICU where Nell was looking for other people who were in the same boat, pretty much, who needed companionship and needed to be able to talk to talk to each other, and she couldn't find someone. So now wrote her own story, my hospital story, which is a book that's now used in the pediatric residency training at Children's National Hospital to help doctors better understand, understand their younger patients, needs and experiences. And I think that is just fabulous. So it is wonderful to have you both here today, and I'd like to start out by asking you each to share a little bit about your journey. So I'm going to start with Nell today. Nel welcome Nice to have you here. Thank

you so much for having me, Deborah, so I think you actually summed up quite a bit of my journey through that wonderful introduction. But I will add on to that and say that it was a pretty scary time when I got my diagnosis with normalized optica. Before that, I was a an avid student and travel lacrosse player and really healthy and normal kids. So my life was pretty much up ended in that moment. And as you mentioned, I felt very alone and didn't know who to talk to. I wish there was something out there that could help me feel connected to other patients who might understand what that experience might feel like. And so that's when I decided to write my book called my hospital story to help other kids. And that kind of kick started my journey into advocating for rare diseases and getting involved in legislative advocacy in these past two years, which has been incredibly meaningful and brought a lot of purpose to the pain throughout my journey. So

have you spoke you've testified about about the experience you've had, and what venues would we have heard you in? Possibly,

yeah. So actually, this past February, I spoke at a rare disease Congressional Caucus briefing, telling my story and advocating for a specific piece of legislation called the pediatric priority review voucher program. And that was really meaningful to be able to deliver my message to senators and staffers on the hill, that's great,

and I know we're entering probably a new world of health care. So voices like voices like yours, are going to be tremendously important to talk to people who probably haven't had this experience, or may not even as parents have, have had the experience of being so concerned about their children and how they were going to get well or get treated. So I really do appreciate you, and a lot of us will owe you a big debt, I'm sure when it's all over. So thank you now, Maggie, how about you? It's good to have you here. Thank you for having

Dr. Maggie Kang: us on so you wanted to know the start of my journey, which was obviously very simultaneous with Nels. I was, at that point, practicing physician, radiologist and Nels my second of two. And I guess we were living what you might expect, or you might call a normal life. And so when she suddenly developed her symptoms and was diagnosed with this rare, incurable neurological disease called neuromyelitis optica spectrum disease, it was a shock and really threw me. I think at that point, as a mom, I think that we all probably have this feeling of. To protect our kids, and feeling like we want to have the answers and solve all the problems. And this was not the case. And so I really had to rethink how I was going to parent and how to figure out a way to survive this. And I think after a time in the in the hospital, which was basically about five weeks in the ICU, and then when she was discharged, that was actually probably the more difficult segment of our journey, because she had, at that point, left school, and she had been completely isolated from her peer group, not doing the activities that she loved. And it was very heartbreaking as a mother to see that. So I think I just had a lot of kind of mental struggles myself, and in trying to support her, what I learned was that the more I supported myself, the better I could show up for now. And I think that was this sort of my realization and coaching and understanding the importance of mindset and self care, and that was also the reason why I wanted to give the TEDx talk, just to kind of share that message with other people.

Yeah, I think you touched on some things that are have always been very important to me in the caregiving world, in that the caregivers got to take care of him or herself first, or you can't be taking care of anybody else, because that is a very demanding job, and it never there's no punch out time. There's no punch card end of the day, if you're doing caregiving, either for the patient or for the person who's doing the caregiving. And I know you mentioned that there wasn't there were some other people in your family, namely, I believe your husband and now has a brother. Is that right? So how did that affect the family dynamic that you had? What changed, right?

Dr. Maggie Kang: Well, I think we could probably separate it out to time periods. The acute time in the hospital was uniquely challenging in that Jake, at that point, I think he was around 11, was at home alone, and so Scott was he. She continued his full time job. I pulled back a bit, and we did a lot of rotations in the hospital. So one of us would be overnight, and the other person would swap out. But during those times, Jake was on his own in sort of like the time when he got home from school into dinner, so that was really challenging. And he didn't know what was going on, and I didn't have the time, or even, I think, the bandwidth at that point to really think about him as much as I feel like. I wish I did. But thankfully, my sister was in town, and she really stepped in and supported him. She came over with his favorite ice cream, she brought over his favorite burgers, which I think at that point was many fun guys, and it was very kind of special to have my family member be able to step in. She doesn't really live in our area anymore, but I'm really grateful that she was available at the time. So in that first segment of the journey, it was extremely challenging. We were just sort of making it up as we were going on, and really at the top of mind was what was going on with now. And so I think Jake, he was very, very good. I guess I don't know better word for that, just in terms of, like, wanting to work with us, I felt like he was concerned about now, and it was just a really challenging time for him, and I didn't really get a chance to talk to him about it until much later now, when Nell came home, was discharged from the hospital, that was a different segment of our journey. I'm much of our journey, a much longer segment. And so she wasn't able to go to school or eat solid foods at the time, and she came home with a PICC line, and we were infusing antibiotics like every eight hours. And so it was challenging in a whole different way. Also, she was in a wheelchair, and I was taking her to rehab and PT and OT. And simultaneous to this, Jake is living his life in middle school, and we had to really ask our community and friends to support us and in driving him from the bus stop or to go to practice, or, you know, there was a really amazing meal training that was created by one of our friends, and they dropped food for us. So I guess, to answer your question, everyone seemed to have played their part. It was a struggle for all of us in every way, and we made it work. But it was, you know, at many times clumsy. Was it was messy, but we got through it. And think we all came closer. Because I know in some traumatic situations, people could really, I guess, move apart from each other, as opposed to getting closer. So I think for us, I'm happy to say that we did get to know each other better in a different way. We all sort of grew stronger from it.

Yeah, it sounds, it sounds like that. I know that a lot of families I talk with. Have the problem you described of just splitting apart because nobody is up to the challenge of taking care of someone full time, and some people don't want to do it, or don't want to be part of it. So that you came through it this way shows a lot about how you grew together as a family. So let me turn back to Nell and say, what kinds of tools did you need? It's been it's been eight years now. What kinds of tools do you think you developed for yourself, both to be part of the family and also to return to the things that were important to you in your life? How? How do you keep that going?

Yeah, so I would say that in the acute setting of coming out of the hospital and everything, my main focus was on getting physically better, because I still was very weak, but after a good period of time, I would say that the mental challenges became much more dominant in my life. I felt very alone, as I said, I felt very frustrated because I was now. I remember being at school feeling so much slower in my classes, my processing speed was not nearly as good as it used to be, and just feeling a lot weaker at lacrosse practice. I really wanted to get back to my travel lacrosse team that ended up not working out super great, trying to recreate the life I once had, and feeling like I was having a hard time letting go of what used to be. And I think it wasn't until I could finally accept that I was living a new normal and a different reality that I was able to it was kind of free in a way, and I was able to explore different avenues. For example, writing I journaling has actually been one of those tools to answer your question that has been so helpful for me, especially when I felt like no one was really understanding truly what I was feeling, and I felt very alone. I just turned to my journal and like start pouring my thoughts onto the page, and little by little, as I wrote more and more, I realized that a lot of the negative thoughts I was pouring onto the page started to transform into positive ones, and I began to see a lot of these gifts, and I converted my journal basically into my book, into the format of basically little diary entries. And I also love transforming a lot of the anguish and pain into artwork. So that's kind of my new thing, instead of sports, though,

that's fabulous. I I was going to ask you if the book was illustrated. I haven't yet seen a copy of it, but I was wondering, did you do illustrations for it as well? Were they photos or or illustrations?

But we worked, actually, with a friend of ours who does graph design to help design the cover, I had to give her all my input. So that was really fun. My medium is not necessarily drawing. Drawings like not my thing exactly, but I love clay, so, but I do love sculpture.

Oh, that's great. So having that, that tactile experience, I've done some things with a wheel, and I always love that sensation of the wet clay under my hands. So being able to make something is is a really powerful antidote to unhappiness, I think, at times for people. So I'm glad, glad that you have all all of that, and I'm looking forward to seeing some of those sculptures at some point, let's see Maggie. Do you have advice for other parents who are working through this kind of challenge? Sure,

Dr. Maggie Kang: I think touching on a little bit of what now just said. I think that when life changes in this really big kind of way. I think there's this feeling, or maybe this happens, even when life isn't changed in huge ways, there's just the feeling of wanting things to be the same. Where it's familiar, it feels safe. Change can be very scary, and change on this level is extraordinarily frightening. But I do feel like for me, one of the things that sort of held me back from moving forward was this feeling that I wanted to go back to what we had before, what I thought was normal, what I thought was the good life, and I just did not want this new situation where my daughter had an incurable disease and we didn't know what was going to happen down the line. So I think when I was able to kind of accept that change and to be open to the possibility of the next was when I actually started to heal, and that for me did not occur until two years after and. And it didn't happen until I actually hired a coach and I got some help for myself where I could really talk things out and hear myself thinking that was really the first time, I think, very long time. So I would say that so

becoming it was becoming a coach a way of healing yourself. What did that lead into that experience, it did.

Dr. Maggie Kang: So when I first hired one, I learned all the coaching tools, and I found them to be extraordinarily helpful in managing my own personal anxieties and helping me to transition into our new life. And in turn, I would share it all with my family. I would talk to Nell about all the things I learned, and my husband and Jake, and so it seemed like everybody was kind of on board with it, and we were all kind of healing together. And so I really wanted to commit to learning that tool or that skill set really well. So I ended up certifying, and I talked to Nell about coaching concepts all the time, and I think it really helps, right? Yeah,

I wanted to echo that and say that seeing my mom's transformation from being very worried all the time to being much calmer and just like this sort of more Zen sort of aura I got from her, like that kind of fueled my own transformation and growth, I would say, because we do spend so much time together, I think this experience has strengthened our relationship very much. And I know I used to feel like, I don't know, the sense of a little bit sometimes, of like, feeling like guilty, because she was, you know, especially when I had my PICC line, she would be coming in at midnight, she would, like, set her alarm, and then she didn't want to wake me up. So she would do, try and do it in the dark with, like, her phone flashlight and everything, and thinking about like we're doing that every night for weeks, I Yeah, so and being her, being able to support herself, was really important to me as well. So seeing that transformation and growth was really, really wonderful.

Oh, that's that is wonderful. I was going to say that I grew up in my dad was a doctor, my mom was a nurse, and I think sometimes people who are not in those professions think that doctors and nurses have superpowers, so when something happens, they're just going to power through everything better than anybody else. Is that something we should tell people?

No, they're human, just as much as everyone. But it's probably true that they are very much almost in the way, superhuman, and that they they have that grit and fight in them to get through like the longest shifts or, you know, set their needs aside to do something to help others.

Yeah, so there. So the knowledge comes in handy, I guess, but there's an emotional dimension that's way beyond any profession that that you might have studied, and yet the coaching you do is a form of healing, too. So the way back was was through another. It looks like it sounds like it was through a different branch of the same sort of the art, part of being a doctor, the the hands on part, rather than the the medical knowledge that you have to acquire. So, right,

Dr. Maggie Kang: right, yeah, but you know, just to Nell's point when she brought up that whole infusion through the PICC line every eight hours. I will say that also it was good that I had the medical knowledge to know how to do and feel comfortable with the equipment and the materials. But doing it in the middle of not in the dark, is a completely different way of doing things. And there was one time when I didn't hook up the IV correctly, and her infusion medication actually leaked onto the bed. And I'll tell you, like, my response to that was not medically kind of reasonable. I just completely just, like, this emotional just freak out, right? And I just thought, oh my gosh, I messed this off. So then now's not gonna get better. This is all my fault. Like, I mean, none of that actually made sense in retrospect, but I remember I would call the the IV nurse on call, and I'm like, I did this. I don't know what to do. Do we, like, get out of the batch of medication? What? What? Like, I was totally freaking out, in a way that just was, I think, much more emotional than it was medical. So I will tell you that I think that is the piece that probably overrides everything. As a mom, because you're so emotionally invested,

I think you just gave our listeners a great gift. Because I do hear from people who say, I've never hooked up an IV before. I don't know what I'm going to do when, when we get home and. Am I going to handle this? And it's not a skill set that most high schools or colleges will teach you, so sort of self selected thing. So I appreciate that you shared that it wasn't easy for you either all the time, so

Dr. Maggie Kang: don't do it in the dark,

but with your phone flashlight, either. Yeah. So, so Nell would have, I think, appreciated if you turned on the light.

Dr. Maggie Kang: Well, I don't know, because then she would have her sleep would have been disrupted. So there's that sound like, maybe a lamp that kind of like, like, pulled it over with a neck, kind of, to focus on that area. That's probably the best thing I could have done.

So now let me ask you, if you had some advice for someone who had a friend who said whose health suddenly took a different turn than anyone had expected. What advice would you give to the friend to help the person who was now in the hospital and things were going to be very different? How do you keep your friend

that is a great question. And from the visits that I got from my friends from in the hospital, my favorite ones were the ones who just treated me like I was nothing had changed. I was becoming more self conscious that they had moved on, and that like seeing me like hooked up to tubes and machines, like they would see me differently, but they came in and they were just their same very happy selves, and they brought like pictures from school and told me all these funny stories, and it just felt like we were Back in, you know, like our in our mouth class, just like goofing around again. And so I would say, Just don't try and make them feel different than they are. Just try and make them remember, like, who they really are on the inside with like disregard the illness, tell them that you hear from them, and also don't ever put pressure on any, anyone in that situation to respond to anything. If anything, just send them text messages saying, you know, hey, we're thinking of you. You don't have to respond to this. Like, just want to let you know. Like, if you need anything, just let me know things like that.

Oh, that's wonderful. I think it's kind of a mirror image of your mom figuring out who she was now and and wanting to become this new person who could cope with the current situation and finally getting past that denial. But it happens differently for the person who's suffering from from the person who's trying to help them. So those are kind of lovely Mirror, mirror images of of those two steps that go off on your in your mind. Now, did any of your friends bring you candy in the hospital? Oh

yeah, it was like around the time of Valentine's Day. So I distinctly were ready. Remember getting this giant chocolate Hershey Kiss. It was like this big. I don't think, I think you might have just taken nibbles of it because it was so big, but it was just like this big prized possession of mine, this big chocolate Hershey kids,

the kind of thing you always want. And you know, you're, you know, your mom's not gonna let you have it, but you got it. So now, Maggie, did you know about the Giant HERSHEY'S Kiss?

Dr. Maggie Kang: Oh sure, Her room was filled with so much love, like stuffed animals candy, it was awesome.

Oh, that's fabulous. So, so we're coming close to the end of our time here, and I want to ask you both, and you can think for a minute, what is a key message that you hope listeners will take away from hearing your story. Who would like to go first?

Dr. Maggie Kang: I'll go Neil, still thinking you look like you're still thinking, Okay, well this is, this is going to sound a little bit coachy, but I'm going to share this because this is probably the most important message that I think I can think of, and the one that helped me the most is this. I think life happens. I mean, we cannot control, obviously, the circumstances. And really we have no control over that. And so the thing is, is that when things happen, it's like, I think the, as I said before, it's the first important step is just to accept and acknowledge that the change has occurred, and then to really think about how you want to respond, and that is 100% within your control. And then actually, in life, when things are a certain way, it is actually neither good nor bad. I think in most people's minds, your kid getting diagnosed with a disease is a horrible thing, like, There's nothing good of that. But really, so much beauty and experiences and friendships and relationships have come from that. So that is my message.

I think so. It echoes my mom's point in that. I mean, obviously I wouldn't have been able to say this at the time of my diagnosis, but there are so many beautiful things that can come out the experience if you're willing to let that in, if you're willing to embrace both the pain but also all the gifts and all the light that comes out of it. And I think that you have to be willing to accept both in order to move through it. And yeah, there's just, there's so much out there that if you're willing to see it, it'll it'll come to you. And things do happen for a reason, I think that's, like, one of the mantras that kind of kept me going and just questioning, hey, this is going to teach me something. Hey, what is why is this happening? But not like, why is this happening to me, but why is this happening for me, and what can I get out of it?

Dr. Maggie Kang: Oh, yeah, we've talked about that. I'm so glad you said that.

You told me I remember a while ago, but I still remember you saying that. Oh,

Dr. Maggie Kang: so glad you remembered, I mean, and I just to put a plug in, just because you have touched on these concepts that I these are the ideas that Nell actually wrote about in her book, just you know, these moments of like friendship and love and beauty and light that she could see coming into her life despite the fact that she was in this hospital and she couldn't do all the things that she had been doing. So read the book. It's called my hospital story. It's amazing,

I'm sure, and I am looking forward to doing that myself. I one of the things that was so so beautiful to me about all of this is that you taught us so gently, so kindly, that the growth will come about if you accept what is in so many ways, and love and all of those other things that can flower from from acceptance, are the kind of nurturing, the the food that you need in order to to get to that place. And it's been obviously a a strenuous journey, but it's one that the two of you have navigated, and your whole family has navigated to perhaps a closer place than you might ever have been so so this has just been a wonderful story, and I want to thank you for being so good about sharing so much of it with us. I really do appreciate it. Now we're all going to be facing probably a new world in healthcare, and that that is of some concern, because I know orphan medications and orphan diseases are often a big challenge. What would you want to say to policymakers? We'll close it up with that people who are making decisions about what is cared for and what is not along the way.

I would just say, like, this is something that is in your control, something that you can have an impact on. And this is the difference between, like a kid going out, being able to go to school, have friends, play sports, do art, the difference between that and being worried about just being able to survive. And I think that's not a burden that any kid or any person really should have to live with. And these treatments are life changing. I know, for me personally, that ever since I was able to get on my FDA approved treatment, it has absolutely changed my life, and it's the reason why I'm here today and speaking on this podcast, and so to give other kids, other people, the opportunity. Um, it's so it's so simple as just passing like policies and things that incentivize these drug companies to develop research, because it's possible to create treatments and therapies. It's out there. There are amazing people in these fields that have the capacity to do these things. So that's yeah, that's what I would say,

yeah. Let's keep the research going. Absolutely. Maggie, any, any afterwards for that? Yeah. I

Dr. Maggie Kang: mean, obviously, I fully agree, but I do, I guess, want to make this one point. So when we talk about rare diseases, I think people think, Oh, well, it's just, you know, a couple people out there who have diseases. But really, the truth is, collectively, we're really not that rare. We're really not it's like one in 10. So I think to overlook rare disease research or policies that support rare disease patients, it you really not doing a service to one in 10 Americans. So I really. You hope that the administration and the policy makers reconsider and reauthorize the prb?

Yeah, that is a serious number of 10% of the population. Oh,

Dr. Maggie Kang: I know children. Most of that is children.

Yeah, we need indispensable Policy Advocates like yourself. So I hope you won't stop, and I hope you won't get discouraged, because you have the compelling story that I think people need to hear. Facts and statistics are fine, but hearing from actual people who are fighting and living every day and have accepted who they are, but are also hoping for for a better chance for others as well as themselves. These are the people we need to have to keep a compassionate society, and these are you. I

Dr. Maggie Kang: had started a newsletter for actually moms of kids with wearing chronic diseases, but really it's opened up to a lot of people, even you know, dads and people who don't even have children, but So the message is very universal. So if anybody is interested in that, they could find it on my website or just www dot, Maggie Kang, MD, forward slash, caregiver, and you get a little PDF on a lot of the concepts that we discussed on this podcast.

Oh, that's great. We will put that in the show notes as well. So I certainly want to ask Neil, where can we find your book?

Yes, it is available on Amazon. So if you just search up my hospital story, it should come up.

Fantastic. That's where I'm going to go right after we do this podcast. So thank you both. Thank you both so very much for being here. You,

Dr. Maggie Kang: you. It was a pleasure.