PLEASE NOTE: This is a minimally-edited transcript that originates from a program that uses AI.
Anita Rao
This is Embodied, from PRX and WUNC. I’m Anita Rao. What would you do if you knew your brain would stop functioning normally in just a decade? For brothers Ansel and Cosmo, this isn't hypothetical. They carry a rare genetic mutation which will likely lead them to develop dementia by their mid 40s.
Cosmo Hinsman
You get so paranoid, you know, any kind of disordered thinking or forgetting things or not being able to solve puzzles or problems. You think, oh, this is, this is it.
Anita Rao
Cosmo is 26… Ansel 31… and they’ve watched this condition alter the lives and personalities of many family . Now, they’re trying to build their own lives against this known clock.
Ansel Dow
I've known ever since I got tested that I don't wanna have biological children.
Anita Rao
A conversation about how certainty about what’s coming for you so early in life shapes your decisions and relationships? Just ahead, on Embodied.
Brothers Ansel Dow and Cosmo Hinsman inherited a lot from their mom, a love of music, a reverence for science, and a rare genetic mutation, which has been slowly wreaking havoc on their family leading relative after relative to develop a type of early onset dementia that fundamentally alters the front lobe of the brain.
The first to change was her Aunt Christie, who in her late thirties, started showing. Serious signs of cognitive illness, including erratic behavior and major personality changes. By the time she was 45, Christie was unable to pay her bills, keep her job, or live on her own. Then a similar thing happened to their Aunt Mary and then to their mom.
For much of their childhood and Adolescences, Ansel and Cosmo knew that something was going wrong. They heard stories about their aunts and witnessed the changes in their mom firsthand. But it wasn't until later that they got a clear explanation. I. Their mom, Peggy and five of her eight siblings had all inherited a genetic mutation that gradually kills neurons in the brain so that by the time each of them hit their mid forties, they struggled to function independently.
Once Ansel and Cosmo knew that their mom had it, they also knew the odds. A 50% chance each, that they did too. This is embodied our show about sex, relationships, and health. I'm Anita Rao.
In 2017, Ansel and Cosmo learned on the same day that they're both carriers of the genetic mutation that has led their family to develop frontotemporal dementia, or F-T-D. F-T-D affects a different part of the brain from Alzheimer's and has a much earlier onset, and its symptoms are more associated with behavior change than memory loss today.
Ansel is 31, Cosmo 26, and they're now living with a known clock. If no cure or treatments emerge in the next 10 ish years, they'll likely develop the same symptoms that have been changing their relatives. We are all living with a clock. But how does that certainty about what's coming for you so early in your life shape your decisions and relationships?
We started our conversation talking about that day in 2017 at the moment that their future became real. Here's Ansel.
Ansel Dow
We were together at the Mayo Clinic in Rochester, Minnesota, which is where a family had been, um, attending research visits to study this disease that had affected our mother and, and many others in the family. I the softness of the, the couch that I was on. I a genetic counselor telling me with a solemn look on her face, that my test had come back positive. My first reaction was that there must have been a mistake. I was not able to, to really feel the grief that that moment brought, and it's something that in the years since I've gone back to, to uncover, to, to dig back up everything that happened in that, that short conversation.
Anita Rao
Cosmo, how was that moment? For you. You are younger than your brother. You're five years younger, so you're coming into this in a slightly different phase or moment of your life. Take us into your version of that story.
Cosmo Hinsman
I think a lot of those emotions were really repressed at the time, and this was. After a period of many years, kind of not knowing what's going on with our family. So there was a sense of relief and I walking out and telling Ansel the results of my test. And you know, we hugged after hearing the probably the worst news of my life, I had a really strong urge to play poker.
Anita Rao
Hmm.
Cosmo Hinsman
And. I'm not sure where that came from. I'm still interpreting what that was, but I spent a couple years after playing a lot of poker and maybe it was like, you know, a sense of chance and luck and maybe it was a part of dementia is impulse control and a lot of people gamble a lot. Maybe I was pursuing that preemptively. But, uh, that's really the, the emotion I as strongest is wanting to play poker.
Anita Rao
You mentioned that there was a sense of relief because you had a sense that this might have been coming. You had been living with your mom, you had watched this develop in her. Is there a memory that comes to mind for you, Cosmo or or story that describes your experience of watching your mom develop frontotemporal dementia?
Cosmo Hinsman
The hardest part. As a kid is realizing that my mom, uh, couldn't work anymore. She had to accept that she couldn't work, and also she couldn't accept that because she had this disorder that made her not be able to think critically about those kinds of things. She used to be a chemistry teacher and a physics teacher, and she would write out. Long slides of physics and chemistry presentations. And I would sit next to her in bed and she would say, CASBO, do you think I'm gonna get a job? And I would say, yes, of course. Mom, you know, I love you and, and you're really smart. And you know, that's who she wanted to be was an educator and someone who's really intelligent and. I think she knew that she was losing that and she didn't have the words to express that she understood she was losing that. But as a kid, that's a, that's a really difficult thing to interpret.
Anita Rao
What's so distinct about FTD as opposed to other types of dementia is it, it really exhibits in a behavioral way, and I know Ansel, you have this image of your kitchen table being kind of a, a spot where you witnessed the evolution of this and your mom. Tell me about the kitchen table and, and, and what that began to kind of show you.
Ansel Dow
Our kitchen table or our dining room table was the center of our house. Um, it's the place that we ate together and it's also a place that we all left our stuff all the time. But there was a time when I was in middle school where mom stopped picking her stuff back up from the table. She worked on this, this big cultural festival project that. Involved a lot of materials and it kind of boxes of posters, et cetera. And they would be there for a few weeks before the festival happened and a few weeks after the festival happened. But the next year, it was a month or two after the festival happened and then the next year she just let them there all year. I would ask her about it and my dad as well. Um, he knew that it was frustrating for me. He would ask her to, to clean those things up, or when we put them away, she would get them back out. And there was a time when I hearing from him that he didn't think it was a battle that was worth fighting. He didn't think that she, she would, I. And that it's just something that we were gonna have to deal with. And it was a small thing, right? In the grand scheme of things, we got by just fine without being able to use this table. But it was frustrating and, and felt like kind of a symbol of the way that she had lost some of that empathy. You know, she was a very empathetic parent and person. That was something that had changed and, and was, was hard for us.
Anita Rao
So. You all mentioned these research trips that you would go on around the 2010s, many of your family had started working with a team of researchers at the Mayo Clinic. They were investigating the particular genetic mutation that you all inherited. So you would go, you would get blood work done, you would get testing done at the time that you all went in 2016 when you got. Your test. What did you and your family understand at this point about the significance of this genetic mutation in your family and what carrying it meant for your future?
Ansel Dow
Through work with the researchers, they, they were able to identify the specific gene that affects our family. Really it's, it's one nucleotide pair that causes this disease and also discover that testing was available. Um, that testing would allow individuals to know if. They were at risk of, of developing the disease. It would also let them know if they had the potential to it on to biological children. And it, it was clarifying after, you know, many years of being in this unknown, this haze. But it also, I. Allowed people to really face what that could mean for their own futures if they found it that they had the gene, and if they found out that they had unknowingly ed it on to their children.
Anita Rao
So Cosmo, when you go back to that moment in time, I. Why and how did you make the decision to get tested? I know that not everyone in your family has made that decision. Obviously, once you get tested, you know, yes, I have it and this is gonna develop, or no, that I don't. Um, why did you decide to test?
Cosmo Hinsman
Um, for me it was never really. A question, I think for a couple reasons. One is that I grew up in a more disordered house than Ansel did. Like he left home when he was 18, which is about the time when our parents divorced. They divorced because they were having problems and didn't know that. These problems may have significantly come from, uh, from dementia. And so I grew up in an environment that was very confusing and fractured and lonely, and it was always a, a good thing to know why that was happening, even if that meant negative things for my future. Another thing is that. Both our parents were scientists and they really believed in research and kind of observational knowledge, and it felt like, oh, if there is something that. We can do about this situation. It is, understand it better and participate in scientific studies and collaborate with doctors and researchers. So there was kind of a, an ironic reclaiming our family dynamic in that way.
Anita Rao
Ansel, how about for you, the decision to test?
Ansel Dow
One of the factors for me was. Having heard my mom express that, that she would want to know that that was important to her. And another was related to decisions I wanted to make about my own life, in particular about having biological children. If I do have kids at some point, non-biological children, it's something I would, I would wanna have a, a really robust plan for, because. Yeah, because the situation that we were in, um, and especially the situation that Cosmo was in, it was just really hard and it was hard on everyone and that much harder because no one knew what was happening.
Anita Rao
Ansel Dow and Cosmo Hansman are brothers and pre-symptomatic carriers of a genetic mutation that causes frontotemporal dementia. Just ahead, how learning about their likely futures has shaped their relationships with one another. Friends and romantic partners you're listening to Embodied from North Carolina Public Radio, a broadcast service of the University of North Carolina at Chapel Hill. We'll be right back.
This is Embodied. I'm Anita Rao. Eight years ago, brothers Ansel Dow and Cosmo Hinsman learned on the same day that they were both carriers of a genetic mutation that would cause them to develop frontotemporal dementia by middle age FTD or the diminishing of the frontal lobe. Fundamentally changes someone's personality and makes it hard to live an independent life. Despite shared insight into their future, the brothers didn't initially talk much about their test results with one another. Cosmo re sharing this with a friend, but for the most part avoided talking about it and did all of his processing on his own. Ansel has shared his results a little bit more publicly, especially through his involvement in FTD activism. But now they've started opening up a bit more with one another.
Ansel Dow
Cosmo. I hearing you tell me about your results was a really, really intensely painful moment for me. I was so, so sad to hear that you had gotten positive results as well, and that was something that I. Really had to kind of shut away for, for a long time. And, and you're right. I don't think that we talked on the phone for a while after that. Cosmo, you and I, and, and our dad as well. We have a, a pretty warm, sweet relationship, especially as adults, but they're not the first people that I go to in my life to talk about things that are really
Anita Rao
Yeah.
Ansel Dow
Difficult or emotional. It's something that we've talked about in the last four years, more than, more than any, any time after we got our results.
Anita Rao
Did you all process it with your mom? I mean, I know you mentioned that you know, that you knew that she wanted to know at the time that you got the diagnosis. Was she able to understand that information and process it? How? How did you share with her?
Ansel Dow
I have never shared my results with my mom. Okay. By the time that. We got our test done in 2017. The kind of conversations that I was able to have with her were, were already pretty limited. She was, would talk about things that were on her mind, but a lot of things outside of that she wouldn't really receive. I think there's a chance she would've understood what I was saying and that it would've made her really, really, uh, really sad. Yeah. I know. It's something that she hoped and hoped for a long time that. That we didn't inherit. Yeah. And it's not something that I wanted to, to put on her, especially because I don't, didn't think that, you know, I would get any kind of resolution or healing out of that conversation.
Anita Rao
Yeah. So Cosmo, you're kind of describing like knowing this, putting it. Away in some form internally, you have this one conversation with a friend that you talked about. You were about to go to college. Is that right? Soon after you found out? Mm-hmm. Okay.
Cosmo Hinsman
Yeah.
Anita Rao
So how did that like shape your college experience? Like were you able to really like. Tuck it away and compartmentalize or, or how did it shape kind of the, that, that journey of being like a young adult in this like very different life moment?
Cosmo Hinsman
I think, well, I think just coming from a very fractured environment shapes my college experience more than anything. And knowing that I had this genetic disorder kind of was just one part of that. And. Yeah, and what I mean by that is just like not having a lot of social skills and like I went to NYU and the persona that I was comfortable picking up was like really arrogant, smart guy. That's what I had was I came from a family of very smart, educated people and. I grew up not having a lot of social interactions due to the way that our family was. And I overcame that by embodying those kinds of values. And I think the, the diagnosis made me more intent in that journey. I think. 'cause a part of FTD is the loss of language. Hmm. And entering college. Knowing that I would reach a point in my life when I wouldn't be able to think critically or complexly or have all the words to express myself, it made me more eager to learn a lot and be very smart, and appear to be very smart and read a lot of books and yeah, I think a lot. Of my academic and personal and creative drive came from just the desire to be a full and real person in the world before that was taken away from me.
Anita Rao
Yeah. It seems like you kind of like turned up the, the volume on the things that you could control that. Were connected in some way to the symptoms of FTD that you'd seen hearing Cosmo talk about that. Like is there a parallel for you or, or what has that journey been like for you? Like do you feel like there's been a part of y your life that you have really turned up as a response to getting the diagnosis?
Ansel Dow
Yes, there is. I certainly, there are things that I, I'm able to enjoy in a different way, knowing that I won't always be able to enjoy them, knowing that my mom, um, is not able to do things like, like make new friends or spend time traveling and doing things independently. Experience these, these more complex parts of life that. Require a lot of independence and cognitive capacity and also just trying to, trying to experience joyful and beautiful things in my life that that become more special when I think about the fact that they won't always be there or that I won't always be able to to appreciate them. That's true also of relationships in my life, of friendships and, and people who are special to me. Knowing that there could be a point in the future where I'm gonna ask some really big things of them, knowing that I'll be relying on people for this really, really important and, and difficult care. Knowing that people around my mom provided her that care without knowing why she needed it. Mm. Yeah. Or where it was coming from and And being in a different situation. Yeah. Being able to talk about the disease, to talk about my experience of growing up with my mom and my aunts, knowing that. That story really, really matters both for people in my life who might be caregivers in the future, but also for, for everyone else who has dementia in their family. Yeah. Who cares for folks with cognitive differences?
Anita Rao
Do you talk really openly with all of your friends and people in your life about. Your genetic history?
Ansel Dow
No, not everyone. It, it, it's a really serious thing. Yeah. And it's also very hard to describe. Yeah. You know, it's not a 10 minute conversation. Yeah. And so it's something that I, I do talk about with close friends of mine, with my partner, and I do it in little chunks. That's the only way I've found to be able to really tell the story is to say there's this big thing that I think about every single day, but there's just a lot of backstory. There's 30 years of backstory there. Yeah. That it's impossible for someone to take in at one time.
Anita Rao
Yeah,
Ansel Dow
and that's been a really wonderful part of my life over the last seven years, is being able to know that I have friends who will accept that and, and care for me as I express these really difficult things. That it doesn't have to be a secret, which is the way that our family and, and many other families treat that kind of disease, which it's just a very difficult and, and heavy load to bear by yourself.
Anita Rao
So your family has been very involved, or some of your family have been involved in the research around this for. A long time. As of right now, there is no cure, there are no treatments. I know you do spend a lot of time in the advocacy and and research world. How does this advocacy help you kind of process your fears and your feelings?
Ansel Dow
It has been so transformative for me and, and really this is a recent story and we've been going for our research visits for a decade, but this advocacy work and telling our story, story publicly. Really only began two years ago. Okay. When some of my family co-founded an organization called Cure Mapt. FTD Mapt is the gene that's that our family is affected by and through working with this organization, I've, for the first time ever met people outside of my family who had the same experience who. Went through a childhood, losing a parent to FTD, who experienced that trauma and neglect and, and sometimes abuse in that situation. And also folks who have gotten positive results or who haven't yet been tested, but have this looming over them and. I can't describe how much of a, a catharsis and relief it was for me to share about this with someone else and understand, oh, I don't have to tell you the whole story, you know?
Anita Rao
Yeah.
Ansel Dow
You have this context and, and we do have these same difficult things we're carrying and not having to carry that yourself is just, oh, it, it's really been, it's really been wonderful.
Anita Rao
Cosmo, how do you feel about the activism world and, and your. Role in it. It seems like for Ansel it has been pretty positive and provided a lot of relief. I'm curious about for you,
Cosmo Hinsman
Ansel has always been a really good person. He does, he's always done a lot of activism and, and that's a, a skill of his that I really respect and that I have never been drawn to. Um, yeah. So I am a cheerleader, you know, ing Ansel and, and I think it's, it's still really difficult for me to immerse myself in this thing, like Ansel mentioned, you know, it's this kind of thing that you think about every day. I can't imagine it. Being part of my life even more. Yeah.
Ansel Dow
That, that is very, it is very sweet of you to say Cosmo. And also, you know, I'm really, I'm in this in a very selfish way. I'm in this because it matters to me personally. I'm in this because it's gonna affect you and other of our family, and it just feels like a different way of engaging with the disease. Mm-hmm. Different from having it kind of loom in the back of my head and. Constantly trying to close it away or say, I don't want to think about that right now. That's just, it's just gonna, it's not a part, something I want to be part of today versus getting to dream and, and envision a different future with other people. And a huge part of that is, is telling stories and putting these narratives into things that other people can understand and digest. Yeah. And Cosmo is a storyteller. Co Cosmo is a writer. Yeah. And I just. I think that's a really special skill that he has and I'm working on him. I'm working on him. I think I'm gonna get him, uh, at some point or we're gonna find a project that that feels right because I. I, I just think, I think you have so much to bring and, and I think that the finish line is not that far away. I think that these therapies for treatment,
Anita Rao
you mean, or for therapies?
Ansel Dow
Yeah, exactly. Therapies and treatments which are not yet in trials really could get there in the near future. And that, that's something that I, I just feel so hopeful about. And. And it really matters when people, especially when positive carriers speak up about their experiences, it has such an impact on the research and the pharmaceutical community and that those voices have been absent for, you know, up until three years ago, people were too frightened to talk about out loud. Yeah. They said, no, this will ruin my life if I tell other people I have to keep this a secret. And that doesn't have to be the case. It really has accelerated the progress in the world of developing therapies.
Anita Rao
I wanna talk a little bit about that and like what the fears are about disclosure. I mean, I can imagine that it could affect work and, and how you might be hired. I'm curious for you both to share, like are there specific decisions that you have had to make or are making right now based on this knowledge that you wouldn't be making if you. Didn't have it at the age that you are, maybe cosmal go to you first?
Cosmo Hinsman
Well, I think having children mm-hmm. Is the big one because ing on this gene would be such a big burden. I think we agree that it's, it's sort of our duty to really avoid spreading it to more people. So the decision to not have children is tough and tougher as you get older and get to an age where you might. Have wanted children, but, but it seems right. I worry about. Employment. I find that I write a lot about my experiences thinking about FTD and interacting with our mom. But, you know, publicizing that might prevent me from getting a job, you know, 10 years in the future if I publicize that, oh, when I'm 40, I am very likely to develop dementia symptoms, you know, uh. Employer who knows that wouldn't, I think, legally wouldn't be able to not employ you for that reason. But obviously it, it influences people.
Anita Rao
Yeah.
Cosmo Hinsman
That knowledge. Yeah. And then there's the aspect of bringing it up in relationships, having a long-term relationship, you know, means that there is a large chance that that person might need to care for you. And that's a huge, enormous thing to ask of someone. It's more than you know. A lifetime of work. It's, it's everything, and that's really difficult. And there are people out there who for some reason accept that and love us.
Anita Rao
Are you by chance talking about your wife? I think you did just get married.
Cosmo Hinsman
Yes, I just got married.
Anita Rao
Congratulations. Congratulations. Tell, tell me about,
Cosmo Hinsman
That's exactly what I'm talking about.
Anita Rao
Tell me about it in the context of your relationship, how it shows up between you all.
Cosmo Hinsman
Well, it's a really difficult thing because, you know, I feel like, oh, I have a, a responsibility to bring it up early on and just disclose that, but I have spent. 10 years learning how to manage these emotions and keep these things in. And although it's producing so much anxiety, not make it a whole part of my life. So when my girlfriend, now wife heard this and then. Weeks, months afterwards, I didn't mention it again. She was completely confused. She was like, this is a huge thing that is going to affect our lives and is so terrible. And it's like you're not thinking about it at all. And you know, being in a close kind of communicative relationship requires bringing up all those feelings again. Yeah. And re-experiencing with another person the trauma of saying. These are the things are that's gonna happen to me. This is how we have to plan for that. This is the financial burden, et cetera. And it's a little disappointing in that way where you hope that including another person helps you share the burden, but actually it part of sharing it is. Uncovering all those really difficult emotions.
Anita Rao
Have you all gotten down to Brass Tack about some of that stuff, or it's still kind of like, we know we need to have this conversation.
Cosmo Hinsman
It's half and half. There's a ton of things that we need to have a conversation about. Yeah, and it's, you know, the big ones like having children we've cleared up and the smaller ones like. You know, what insurance do we need to buy? Do we need to get nursing care insurance? Where are we going to live? How are we going to plan on where we live when this thing happens? You know, those things happen. Those conversations happen over years.
Anita Rao
So you've decided not to have kids. Ansel, you mentioned, or it seems like you said you're both on the same page about that. How is, has that decision played out in your life?
Ansel Dow
Uh, so I, I've known ever since I got tested that I don't wanna have biological children. I know certainly that I don't wanna risk ing on the gene and. Just a year and a half ago I got a vasectomy. Um, for that reason, I had another thing that I wanted to share about kind of what it feels like to go into that conversation with someone else. Mm-hmm. I think this is something that we. I use a big, we here for people from families affected by FTD, by genetic FTD have such a warped perspective on, I think that we think about it in this weird, twisted way that is kind of informed and created by the really difficult things that we went, went through. Um, when we were young, we had, you know, aunts who said, never tell this to anyone. Yeah. Especially not someone who could, you know, be around your employer, be cautious about telling it to your. Partner or your fiance because they might leave you. But everyone else in the world has received this in, in a way that is really graceful in a way that I've kind of not been expecting. Hmm. I don't think a loving relationship is somewhere where, you know, a partner would leave you for this genetic condition that might affect you 10, 10 years in the future. And people in my life have just been able to bring that lens of, of hope of. And maybe hope isn't even right the right word, but kind of a come, come to it without a despair. Yeah. That we had in our family for so long.
Anita Rao
Ansel Dao is a community organizer and advocate and a carrier of a genetic mutation that causes frontotemporal dementia or FTD. His brother Cosmal Hinman holds an MFA in fiction writing from the University of Florida and is also a carrier of that genetic mutation. Just ahead how these two brothers navigate the daily anxiety about their changing brains and take steps to prepare for the unknowns in their future. Stay with us.
This is embodied. I'm Anita Rao. After years watching their mom and several of her siblings develop symptoms of frontotemporal dementia or FTD Brothers, Ansel Dow and Cosmo Hinman got confirmation that this disease was also in their future. They're both carriers of a rare genetic mutation, which all but guarantees they'll start to develop FTD symptoms by middle age. Ansel is 31, Cosmo 26, and they're living with huge unknowns like how they'll relatives affected by the disease whose symptoms have progressed to the point of needing full-time care.
Ansel Dow
Our mom's partner is a man named Tim, who has really provided this, this generous and kind care to her for years and years they've been together, and I still, when I get a call from Tim, have this clenching fear in my heart that I'm gonna pick up the phone and he's gonna say, I can't do this anymore.
Anita Rao
And then there's a question of how and when their own symptoms will begin to show up.
Cosmo Hinsman
It's an impossible puzzle. You know, it's, FTD is the, is the diminishing of the frontal lobe. You think. What is, what does it feel like for that to diminish? I mean, the frontal lobe is. A person's entire personality. It's their beliefs and their thoughts and kind of everything about them that makes them unique. And on really bad days, you get so paranoid, you know, any kind of disordered thinking or forgetting things or not being able to solve puzzles or problems. You think, oh, this is, this is it. Any kind of thing can be an indication that. Everything is about to leave.
Ansel Dow
I disagree with you on that. That it's, uh, I don't think it's an impossible puzzle. I think it, it is really difficult because most people in the world don't have the experience that we have of seeing it up close. And I'll use the example of Alzheimer's, which has some symptoms that are much. More easily recognized and that many people are familiar with because they have an aunt who has Alzheimer's. They, they spent time with a friend who's grandparent, who has Alzheimer's. And when I describe symptoms of FTD, most people don't have that same reference point. But I, I do feel really hopeful that, you know, folks in my life who do have that information, we'll be able to potentially recognize these early warning signs way earlier than we are able to figure them out. For my mom or for other folks in my mom's family. And Yeah, and those, those changes to personality can be really difficult because you can meet someone and talk with them for 10 minutes without realizing that they have FTD. But if you talk with them for two hours, you'll know, okay, something is really up here. This, this person is not responding in ways that I expected and I don't know what's going on, but, but something is up. And I think that's just a matter of familiarity with those personality or behavior changes, context for genetic risk. And it's something that I really have had to kind of comfort and, and console myself about because I. I do think that the situation is gonna be different for us than it was when, when we were young. Yeah. One of those things is no one in our family has developed FTD before the age of 37 or so, and so Cosmo, when I have that, when I'm having having a fuzzy day, I have to say like, no, I'll worry about this later. I'm not gonna worry about this right now.
Anita Rao
Yeah.
Ansel Dow
And, and, you know, dealing with that is, is the case for everyone in our situation who is a genetic carrier, have to, has to deal with those fears, but being able to. Make those distinctions and say, it's not constructive for me to have a panic attack about this. I need to trust that I'm doing my best and that I've been able to prepare, prepare the people around me to, to respond to these things when they happen.
Anita Rao
You mentioned like it's a. It's hard to tell immediately after an extended interaction. You might have a better sense. Is there a go-to example you use when you're trying to describe this to people to help them latch onto what you're talking about? Given that it can be seemingly hard to read or hard to notice in real time, maybe an example that you saw in one of your aunts or family or at a family reunion.
Ansel Dow
Here's an example that feels like helpful for me, is. Telling my mom big news on the phone. We still talk on the phone. We have little chats and there are things that I tell her like I just went on a first date, or I've got my work certification exam coming up next week. And I know how she would respond to that when she was healthy. She would understand some of the things that I was going through emotionally. She would be warm and empathetic and caring, and the way she responds now is. Okay. When you visit, do you wanna go on a walk?
Anita Rao
Mm, yeah.
Ansel Dow
Will you make sure you stop by the store on your way to the house? And I'll say, mom, oh, listen to the thing I just said. I have this thing coming up that I'm really worried about or excited about. And she'll, she'll say, okay, well, uh, just , to call when you get home next week. Mm. And that's a piece for me that, that, yeah. Missing empathy. That feels really characteristic of, of the disease in our family.
Anita Rao
What is y'all's relationship like with your mom at this? Point, she's still living with Tim, who's her full-time caretaker, Cosmo.
Cosmo Hinsman
It's a, it's a lot of walking, it's a lot of, she loves to walk Uhhuh. And I think what's, what's what's hardening to me is over the past eight years is finding that that mom's sense of joy. Does not leave her. She is really happy and there are still things that she loves to do and our relationship is going and doing those things like walking around the neighborhood. And she loves to have a beer once a day and she will really look forward to it and she'll, she'll make you have it with you and yeah, so our relationship, I think is finding the things that. She still really enjoys and engaging with those. Oh, and she loves the Bee Gees. She loves to dance to the Bee Gees. That's, I think, her favorite thing in the world right now.
Anita Rao
Music has always been big for her, right? That's right. Mm-hmm.
Ansel Dow
And it's one of the things that she has really retained, uh, in a very deep and special way. Almost all of the, the memories from our childhood, she's not able to access or, or talk about, but she will. Play music with us. She will sing songs and she kind of has the, those tunes and the lyrics in her head, um, in a way that feels really, really precious.
Anita Rao
So, Cosmo, I wanna go back to something you mentioned recently, which was that like you're constantly weighing on the, on a day to day, how much attention, mental attention do I give to this? How do I manage that in my partnership and my relationship from a mental health perspective? Like have you found routines or, or ways of ing yourself as you try to kind of have these big conversations while also living your life and, and trying to do both at the same time?
Cosmo Hinsman
No, and partially because I am also trying to be an artist. I just finished an MFA program, congrat in Creative Writing, and that is an emotionally, uh, that's a lot of emotional turmoil associated with that. So I am still figuring that part out. And I just started taking an antidepressant because it was so intense and that doesn't work. No, I think the things that have made me feel best overall is just being good at things. You know, trying really hard at teaching. I, uh, taught a creative writing class and when I have a good day teaching, I think this is exactly how I want my life to be. And as long as I can do this, I'm gonna feel really good. But those. Moments come rarely because it's really hard to be really good at things. But that's the only thing that I have found that really ameliorates the sense of despair.
Anita Rao
How about you Ansel? And also what is it like to hear your, your brother kind of reflect honestly about his mental health?
Ansel Dow
Oh, it's, it's hard. It's hard because I just want my brother to be happy and have every day be a good day. It also feels nice because mental health is something that we didn't talk about very much growing up, and yeah, I, I think I, I didn't learn how to talk about feelings very gracefully when I was young, and it's something that I wish I'd started doing earlier. It's important to me and it's feels like an important element of a, of an intimate relationship like this. Yeah. And. That's been a big part of my life for the last decade, dealing with moments of, of depression and anxiety, and for the most part, through therapy, finding ways to exp express those feelings better and and more frequently, and to people who, who care for me and. And it, it, it, I do feel very different than I did 10 years ago, but that doesn't mean that I don't still have days that are hard and times that I worry about disease and, and other things in my life.
Anita Rao
You mentioned earlier making really specific asks of your friends or. Letting them know that you might have specific asks. Is this something that you have like written down somewhere or, or formalized?
Ansel Dow
No. Uh, it will be in the future, but, but it's not something, you know, writing down a checklist is not something that I've been doing right now. The ask that I've been making of my friends recently is listen to me tell you about the story of my family. Listen to me share what it was like for me when I was young, what it was like for my cousin because. Those stories are, are really the foundation of, of understanding and responding to disease in the future. And those are stories that I'm learning how to tell. Yeah, that I had not told before last year. I. It's difficult to pull the details together that in a way that's understandable for someone else. It's also something that we've had help with. There's a journalist who wrote about our family. Um, a journalist's name is Bob Culker, and his piece was called The Vanishing Family. It was published in the New York Times a year and a half ago. And being able to share that with people and see, say, this is what I've been talking about. And he wrote about it in this way that, that anyone could. Connect within grasp. That is, that's really what I've asked of my friends is to say, this is really important to me and here's a, a starting place. And it would mean a lot if, if you're able to take some of the story in
Anita Rao
Yeah. Cosmo. What was it like for you to s to to read that piece and see the story of your family told so publicly like that?
Cosmo Hinsman
I don't think I read it. I think I, I think I read a little bit of it, Uhhuh and I said. This is too much. I already know this. You know, I feel good. I feel really thankful to, to Bob Coker and I, I'm almost surprised that the emotions I have about my family could even be externalized. That some, someone else could even understand them in such a articulate and deep way. Now it's very intense and very. It feels wrong. It feels like these are two different worlds and they belong in two different places. And seeing all of this emerge is hopeful and scary, you know, because it involves figuring out how this has really affected me.
Anita Rao
I'd love for you all to share a little bit about the evolution of your relationship in the past F four years and. Maybe what you're hoping for as you look forward to the next four. I mean, this is a new phase where your family story is more public. You all are having this very public conversation with microphones on. I guess maybe let me start by saying, what has it been like to have this conversation together today in the context of how your relationship is evolving?
Cosmo Hinsman
It feels good. It feels like this is the, this is the, the culmination of a process of learning how to talk about difficult things like, you know, four years ago I think we felt very similarly, or I felt very similarly, but we were experienced thing this in a kind of private way and we would go to the Mayo Clinic and not talk much about it, but just. W understand it, and now we have the same understanding, but Ansel is learning how to expose other people to that and learning what there can be done about it. And it feels like this is, this is the kind of thing he has been preparing for and, and it feels really good to see him and to hear him and to hear what he has to say because it's been eight years of figuring out what the right things to say are.
Ansel Dow
I, I feel the same way that, that the telling of the story has really changed how it lives within me and Hmm. Being able to have other people, people in my life and, and people beyond that, strangers and folks I don't know, have some kind of connection with the story has helped me realize just how much we've been through, how brave and strong so many of our family have been, and that, um, that it is reasonable to, to be hopeful about a different future and that. We don't have to be bound by the kind of secrecy that that has really felt like a, a heavy weight for, for so many years. It makes me feel close to you. Cosmo makes me feel close to the rest of our family who, who has had to kind of, kind of bear that load for so long and, and it just feels nice to, to be able to talk about and be able to say. This is what's been happening. This is part of who I am, and it's not something that, that needs to be a secret
Anita Rao
Well, to end, I guess. Is there, is there anything you all wanna say to each other about how you hope the, your relationship evolves from here? And if there's anything you feel like is left unsaid, uh, now's the time to say it.
Ansel Dow
Cosmo, I love you so much. I feel so glad for the time we get to spend together. I think that there are many ways that we are very different and I it's just such a treat to get to experience you as a person and that the magic and, and specialness of, of you as, as someone that it. We, we share so much in common and, and it is really a joy for me to get to be your brother.
Cosmo Hinsman
Oh, I feel the same way. I think, I think in my mind you will always be the, the, the cooler, smarter, popular, older brother. I , I being in, um, I must have been 12 and watching you. Do Macbeth in high school, and you were so powerful and majestic, and now I feel like that again, you're on the, you're on the world stage doing something really meaningful and I just, I look up a, you and I, I think, God, I wish, I wish I had that kind of life and energy and I, I feel so proud.
Anita Rao
Ansel Dow is a community organizer through the organization, cure Map, TFTD. His brother Cosmo Hinsman is a fiction writer and recent graduate of the University of Florida's MFA program. Cosmo and Ansel are both carriers of a genetic mutation that causes FTT. You can find out more about their family, including a link to the New York Times piece, The Vanishing family at our website embody w unc.org. You can find all episodes of Embody the Radio Show there and subscribe to our weekly podcast. Today's episode was produced by Audrey Smith and edited by Kaya Finlay, Amanda Magnus and Wilson Sayer. Nina Scott is our intern and Jenny Lawson, our technical director, Quila, wrote our theme music. This program is recorded at the American Tobacco Historic District, North Carolina Public Radio is a broadcast service of the University of North Carolina at Chapel Hill. I'm Anita Rao.