Last time on Roads Taken, Nakiah Cherry Chinchilla delivered Part One of her story, in which she talked about her early career in fashion and television and how she was always listening to her heart and feeling as though she were called to do more. At the same time, her home life became very confusing when her husband began exhibiting odd behaviors. That chapter ended as her husband Mike—who had been hospitalized numerous times for mental illness—came home and things between them seemed to repair themselves. The biggest trails, however, were yet to come. Thus begins Part Two with Nakiah on listening to your heart and tenaciously keeping on.
Guest Nakiah Cherry Chinchilla shared part one of her Roads Taken story, in which she talked about her early career in fashion and television and how she was always listening to her heart and feeling as though she were called to do more. At the same time, her home life became very confusing when her husband began exhibiting odd behaviors. That chapter ended as her husband Mike—who had been hospitalized numerous times for mental illness—came home and things between them seemed to repair themselves. Eventually, a psychiatric admission to the emergency room helped Nakiah recognize the symptoms of Huntington’s Disease in Mike.
With the terminal diagnosis came clarity of treatments and a new set of resources she could rely on. As it is an inherited condition, however, she knew that their son Auggie might also have an uncertain future. His juvenile Huntington’s Disease and Nakiah was committed to making the most of the time he had. They turned it into an adventure, checking items off of Auggie’s “baby bucket list.” Along the way, Nakiah has returned to school for coding, data science, and engineering to understand both Auggie’s condition and the innovations that are possible in therapeutics for people with disabilities. In diving into those new technological fields, she ended up finding an answer to the call to do more to help people.
In this episode, find out from Nakiah how listening to the call of the heart can help you help others…on today’s Roads Taken with Leslie Jennings Rowley.
About This Episode's Guest
Nakiah Cherry Chinchilla, is a data scientist and engineer focused on the use of data and technology in making significant changes in the lives of people everyday. Her interest center on the creation and development of technology, apps, games and advanced bionics for special needs children, disabled citizens, and underserved communities. Though she has extensive work experience in public relations for fashion and media companies, she has developed hard-won expertise in neurodegenerative diseases, data analytics, assistive technology, digital media, and special education advocacy.
Part One of this Roads Taken story was posted on April 4, 2022.
Mentioned in This Episode
A study discussed in a previous Roads Taken episode with Elizabeth Manheim included the mini-documentary “Auggie’s Story,” produced in association with Nakiah Cherry Chinchilla and intended for use with the case study “Auggie’s Story: A Child with Huntington Disease” by Laura Y. Lorentzen, Kristie Reilly, Connor Baucom, and Elizabeth A. Manheim.
Executive Producer/Host: Leslie Jennings Rowley
Music: Brian Burrows
Find more episodes at https://roadstakenshow.com
Email the show at RoadsTakenShow@gmail.com
Nakiah Cherry Chinchilla: I could either let this devastate me, which it does…[or] I felt like I can be sad about it later. Like I'm not gonna use the time he has left on this earth to let my sadness about the situation overwhelm me. Because you know, life is short and I always knew life was short, but now it's like, damn.
Leslie Jennings Rowley: Last time, on Roads Taken with me, Leslie Jennings Rowley, Nakiah Cherry Chinchilla delivered Part One of her story, in which she talked about her early career in fashion and television and how she was always listening to her heart and feeling as though she were called to do more. At the same time, her home life became very confusing when her husband began exhibiting odd behaviors. That chapter ended as her husband Mike—who had been hospitalized numerous times for mental illness—came home and things between them seemed to repair themselves. The biggest trails, however, were yet to come. Thus begins Part Two with Nakiah on listening to your heart and tenaciously keeping on…
NCC: How do I explain it? It was very, he got to the point where he just, he just listened to me. He didn't yell at me anymore.
And he was staying at home and I put the TV on for him and he'd sleep and he'd watched the TV and I'd take all, get to school. And then I take all get to his play dates. And I pretend like everything was great at the kids. I was in the mom group doing all the things and Augie was whatever, doing all his little things kids do. But a couple of times I came home and, Mike had taken all the pictures of me and Auggie and turned them face down. And I was just like, what is that? And I was just starting to get paranoid that that meant something, right? Because I was like, I don't know what what's up with that, but I don't like it. You know what I'm saying? Cause you just got out of the mental hospital. You now you turn the pictures to me. I was like, I don't know what you're doing in here all day. You coming up with these scenarios in your head.
Around early to mid December, 2016, I took Mike to UCLA to the emergency room. And when he was out of my range, I went and talked to them and I was like, listen, I, my husband has been under two psych evals and been admitted to the psych ward twice. And I just think something's going on with him. I don't know what's going on, but whatever, whatever.
So they took him back in there and they started asking him questions and then he started acting hostile and they had ended up putting him in the lock ward in the emergency room at UCLA, which I have been in several times now.
The psychiatrist came out and he started—this was the first time I had been there when Mike had been admitted to the psych ward, right? And so the psychiatrist came out and asked me a bunch of questions and I told him about Tourette's and I told him about how Mike had been. They told said that one hand he was psychotic and other hand schizophrenia and he had been fine. And then all of a sudden he wasn't. And they asked me a bunch of questions. I was like, oh yeah, he does that. Oh yeah, he does that. Oh yeah, that happened. Oh yeah, that happened. And they were like, have you ever heard of Huntington’s Disease? And I was like, no, what’s that? They were like, I want you to go home. I want you to Google it and look at the symptoms. And then I want, when you come back tomorrow, we can talk about any of the symptoms, write down any of the symptoms or occurrences he’s had of this disease. And we can talk about it. So. At home I Googled Huntington Disease and Mike had every single one of the symptoms. Every single symptoms, he had two or three ideations of each of the symptoms. And I was like, holy shit is this is what’s going on with him? And then I was just like, wait a minute. This is hereditary. And then I remember him telling me about his mom and then I started reading and then I became obsessed that whole night. And I read everything. It wasn't really a Huntington's Disease that existed on the internet, which if you don't know, is…Huntington's Disease is basically ALS plus Parkinson's plus Alzheimers plus dementia. And then that's Huntington’s Disease. It's the worst of—they call it the devil's disease. It's the worst of the worst of the neurodegenerative diseases that exist. It leads to the complete degeneration and it kills all the cells in your body. So you lose the ability to walk, to talk, to think rationally, to breathe, to speak everything you just slowly, everything starts to go away.
And it's only, you can only get it if you inherit it. And Mike inherited it from his mom. And I, later on, I found out that his grandfather had it and seven of his nine aunt and uncles had it, but they didn't call it Huntington’s disease, they called it something else. So that's why, but Mike had, he had, remember, I told you he had had problems running and he was weird. He had started having mobility issues, but he just ignored them. It was just like whatever. And he, but he started to have, it was more of the mental deterioration. I think part of it was like when I went to stay at my parents for awhile and he had to take on everything by himself that, that stress helps exacerbate the mental, his mental deterioration. And, and then when he thought that I was gonna leave him, that just exacerbated it more. And so, and when he was on his own, he completely fell apart. So, and so that's how he ended up. He couldn't keep anything together. So. They did a genetic test, which came back in January, which said Mike, a hundred percent had Huntington's disease, which was like, okay.
So that changed everything in terms of the way we were able to deal with in terms of it changed everything in a way I felt about everything that had happened in the past year before, because I had been so angry at him and had, I had my own anger and issues and resentment towards his behavior towards me. But then when I realized all of this is happening because he had a mutant gene in his brain and he was terminally ill and didn't know it, I just let it go because what the fuck?
LJR: Just like that?
NCC: Just like that. And mainly it was like, cause I, cause I remember I'd had all these feelings of like, I can't believe I chose somebody to marry who would treat me this way, all these feelings of self-doubt, about how could I have picked somebody to love who would be this way. And also the doctor saying he had Tourette's he never had Tourette's and then all these things. And I just had so much hate for myself because I thought I was a good judge of character. You know, I could sense people's energies and essence. And like, you know, like I chose this man. I got engaged him after the week I married him. You know, I brought him amongst my family and then he turns out to be an asshole. Like even though people do that every day, people marry assholes all the time. You know what I'm saying? But so when it turns out that he had Huntington Disease, I was like, oh, cause the man I married was in there.
But the disease, the thing about Huntington's Disease is that it takes over, it takes over everything. One of the things they found that during the pandemic is that researchers found that the Huntington disease will kill cancer. It will kill, it kills everything. Like you can't have cancer HD cause the HD will kill it. You know? Like, but not like you want to switch to having cancer and have HD. You don't want that. You know what I'm saying? Cause it's much worse of a disease.
So so Mike was admitted to Resnick and they started treating him for his Huntington disease. And that's when I met his great doctors, and he got a neuro psychiatrist and he started doing better. But they said that he would have to be taken care of. He could no longer manage himself. But that's one of the things, because one of the things people don't understand about people with mental illness is cause at first I thought he was mentally ill and I was trying to get him help and get him forced to take his meds. But you can't do that for somebody that’s mentally ill. But Mike’s mental illness was just a condition of his Huntington's Disease of his medical condition, which will cause that, that changes things up. So I immediately became, the doctor was like, you need to become his conservator. I did all the paperwork myself and presented it to the judge. And the judge was like, you did it all yourself?. I was like, yeah. She was like, okay, then go ahead, girl. I did everything I was supposed to do. I thought all the documents and I became Mike's complete conservator. And I, at the department of Homeland Security, I retired him out. He got early retirement because he was ill. So he got a pension, which was great.
And I remember I was when I was signing up for long-term care and health and life insurance, Mike didn't want to sign up for those things. Cause I did all this paperwork for his job and he was like, I'm not going to need those things. I don't like to do that. Cause that's bad luck. I was like, listen, you never know what could happen. What have you did buy a car or something? We need long-term care insurance just in case. And thank God I did. I tell everybody now, now it's apparent through your work place of work is maybe about $6-10 every two weeks. It is worth it, especially with what people don't realize that. Everybody wants to talk about pandemics. We are in a pandemic of neurodegenerative diseases. They suspect in the next 20 years, 40% of our population are going to have some type of neurogenic disease, the Parkinson's or ALS or Alzheimer's, or dementia or HD, which is actually very rare, only about maybe 30,000 people in the country have it. But these neurodegenerative diseases for whatever reason are creeping up on us and people don't realize it. And long-term care insurance was the saving grace, because we had so much long-term care insurance. I put Mike and I'm really nice there's home, which had a pool. Of course, Mike didn’t last long at that nursing home. Cause Mike kept trying to escape because he wants to be with his family. He wants to be with me at Auggie and that's just not how it works. So he broke out of that one and then I put him in another one and he broke out of that one and I put him in another one. The joke is that Mike has been, Mike has escaped from every nursing home on the west side of Los Angeles. And it got to the point where the nursing homes that would accept him weren't as good as the ones before, because they found out cause Mike was a 220 pounds, six foot guy, you know, most of the other, everybody else at a nursing home. I remember some of the older men trying to fight with him and he'd be like, why are they trying to talk to me like that? Cause then, you know, he'd be the youngest person in earth. That's the one, cause this was, he was in his forties. He was in his early forties at this time. Yeah. And so then I tried to take care of myself, right? So then I was like, okay, I'm just going to renovate a house and I'm going to take care of Mike and Auggie And also at this time, this is before I realized Augie was sick because when Mike first got sick and they told me it was hereditary, I wanted to test all get. And he said, you can't because of the ethics of autonomy. And I didn't realize it at the time, but it took, it sometimes took between three to seven years for kids with HD to be tested for HD. But what saved me is that I had already put Auggie in therapy when I decided to leave Mike, when we had gone to Berkeley. So he had already been in therapy long enough that six months later they tested Augie, but I already knew Auggie had symptoms cause he had symptoms from Juvenile Huntington’s disease, which is a totally different disease from regular Huntington's disease. It is even more rare.
I remember it started with a trigger thumb. When he was in kindergarten, his thumb kept holding like this and clicking. And I took him to the pediatrician and she was like, oh, it's nothing to go away. I was like, I don’t know. And then people would try to think, oh, maybe he's autistic. I was like, oh, Augie’s not autistic. Because when you look at the spectrum and they tell you what to look for Auggie doesn't do any of those things. They're just, he just exhibited some abnormal behaviors that are, were concerning prior to Mike being diagnosed. And I thought it was maybe just the trauma or PTSD from his father having been acting all out of pocket for so long. But it turns out no. So I guess 10 months later in November of 2013, no, actually a year and a half later in November, 2014 August, They finally let Auggie have a gene test. And his test came back in November as having Huntington’s Disease. And not only that, his CAG level that determines how fast the disease progress was in the early nineties. Cause Mike’s CAG levels were at 40. So the higher CAG levels, the younger it affects you. And the faster it is. Cause Mike didn't present symptoms till he was in his mid to late thirties. Whereas Auggie started presenting symptoms when he about to turn five. Cause that's when he had the trigger thumb. So that's when it really started to dawn on me that I have a husband who is terminally ill and I have a kid who's terminally ill that they're telling me that it's probably not going to live as long as my husband's going to live that cause Huntington's disease, juvenile Huntington's disease progresses extremely quickly unfortunately.
LJR: But Nakiah. So when you got your husband's diagnosis, it was almost a relief because it explained so much about behavior that you didn't like, and it kind of helped you figure out, okay I,wasn't a crazy person for seeing what I saw originally in this man. And, and now that explains something. When your son gets the diagnosis, it is not that it is not explaining away anything bad. It is just bad news. Terrible. So how, yeah. Yeah. So how do you deal with that in the moment?
NCC: How do I explain it? I guess the first time I realized even before his test came. I realized he had Huntington’s disease and I tried to prepare the people around me and everybody was like, you know, you're just tripping. Auggie’ll be fine. Nobody wants to think that it was possible. But I had already, I had actually been living with it and realizing that that was what was happening for like a year before I shared it with anybody.
Nobody, I knew even thought that Auggie could be sick. You know, Auggie was a happy kid. Always been a happy kid, always been the happiest fucking baby kid. He still is. And, but, so I had a period where I had like a dark, like two, three months where I was like really, really sad. And I was really, really angry. And it was the sort of thing I did not necessarily share with anyone. Cause when Auggie had been in school, when I had, when Mike had been at the crazy, that was sort of like a dark time for me too. But I would be with the kids every day. And the energy with being a preschool teacher, the joy that the kids had just totally brings you out of that. But when I realized that Auggie was sick, it was like, I need before I can talk to anybody, I really have to figure out how I feel about it. And so that was that was an very intense process for me.
I deal with things this way: I can either do one or two things—I can either get lost. Cause I know as a parent of a terminally ill child or chronically ill child of a kid with special needs, sometimes it's, I don't want to say easy, but I find it…I find often I meet a lot of parents that, and there's no judgment against them, but they are often caught into how it makes them feel to have to deal with that as opposed to a child to have to deal with that.
And I knew that Auggie's feelings about this would be…the Genesis of his feelings about this would come about based on how I presented it to him. Right. So it was like, I could either let this devastate me, which it does. I just present my devastation in a different way than most people do. Cause it's not like I'm not devastated because I am. [LJR: Right.] You know. People don't even realize because all these really, really sick. And this was before he was really sick. Like he's really sick now, you know? And he needs 24-hour nursing care, the whole nine. But at this point he didn't, but I always, I felt like I can be sad about it later. [LJR: Yeah.] You know, like I'm not gonna use the time he has left on this earth to let my sadness about the situation overwhelming, because you know, life is short and I always knew life was short, but now it's like, damn, I married this man. I had this baby. I thought I had the rest of my life. I was going to have grandkids. Fight for him to go to Dartmouth and, you know, dah, dah, dah. I used to joke at the beginning, the hunting, well, it wasn't a joke. It was kind of like a feeling I had at the beginning that Huntington’s disease killed my happy ending because I met a man. I fell in love. It was a great love. And I had a baby I love. A great thing. And Huntington’s Disease at the end of the day is going to take all that away from me. But I just, it wasn't so much that Huntington’s Disease sort of is killing my happy ending. It's just changing it. So what I did with Auggie was I presented it and like, cause I had told him that his dad was sick and he had a mutant gene in his brain.
And one of the things I've always done with Auggie is that I've really been big on superhero things and like movies and supernatural sort of science fiction kind of thing. And I've always really been into like the X-Men and stuff like that. So it's the same way I presented it to the kids in his school. When we told his classmates, it's sort of like, you have a mutant gene in your brain and the mutant gene is working against you and you're going to fight against it as much as you can, but eventually it's going to make it so it's going to be hard for you to walk. It's going to be hard for you to talk to mama and to papa. And one day you might die, but one day everybody's going to die, you know? So, so that's just how it is. And I want you to think of all the things you want to do, and we're going to do all those things. And that's where the baby bucket list came about.
And so I brought Mike home to live with us and I thought I could really manage it, but I couldn't because Michael was very unmanageable. I remember one time, right before August birthdays, like eighth and ninth birthday, Mike went missing for eight weeks.
LJR: Eight weeks.
NCC: Eight weeks. And the only way I was able to find them, even though there was a missing person report out on him, the only way I was ever, I was able to find him is through billing records because, you know, Mike had Aetna, but he also, because he was a retired and disabled, he also was on Medicare. Cause then I started getting bills from Medicare saying that, oh, you got bill for being at this facility. It was like hospitals, right by us that he was missing. But they thought he was mentally ill. He was going inside the hospitals asking for help and asking for food. But because he didn't ask for me…
LJR: Right.
NCC: They just thought he was like some
LJR: Vagrant…
NCC: Homeless person with a mental health deficit. And so they just treated him, gave him a sandwich and sent him on his way. And they never reported it to police, but they would bill them. And so, so I had to backtrack the bills. It took me two months to backtrack the bills. Cause you know, everything is built I guess, in the rears or whatever.So it came like 30 days late. So I would start backtracking the bills. And then that's how I found him at a convalescent home and downtown. And then I brought them home. So that was the longest time he went missing. But it wasn't until we had an incident where I was cutting Auggie’s fingernails in the house. And we were all living in the same house. And then when I was doing Auggie’s nails and I'll get him to get his nails done. So he would start, he started screaming at the top of his lungs and then Mike came out of nowhere, did not recognize me. And she started attacking me physically saying, you are not going to hurt my son. And the crazy thing about that is he was calling for me at the same time. He was like, Nakiah. You need help. This demon is hurting Auggie. It was the craziest shit. And so I wasn't even fighting back. And even the dog. The dog and Auggie were both like, what the hell is going on? Why is he calling for mama? But then he kept kicking, grabbing all, get away from me. It was like kicking at me to get me away from all. And then finally I got us in the room and I got me and I'll get in the room and I closed the door and then 10 minutes later, Mike calmed down and he didn't even know what was happening. When I told him he just started crying. He was like, so upset and so devastated because that's that wasn't him, you know? But he thought somebody was attacking Auggie cause he heard Auggie screaming and he just didn't see me, you know? Because that's how bad his disease was. But it was at that moment that I realized that I can not take care of this man in this house by myself. Like, I don't know what I was thinking, but this is not a good idea. Cause then he's only going to get worse, you know?
LJR: Right.
NCC: So I'll put him in another nursing home and then I was like, you know, I'm gonna take Auggie on his bucket list trip. Cause Auggie by that time was already in a wheelchair. And we had been having problems at school. It took them forever to get a ramp. Just like the whole process. They claimed that they didn't have to provide transportation. I was reading all about laws related to children in schools, like straight from the actual laws themselves. I was on the internet every day, all day, just reading and learning everything I could to learn how to help my kid. So I became an hella advocate for special needs kids. And a lot of people were like, why don't you just take Auggie out of that school? And I remember saying stuff and people just being like, what? And I'd be like, it's not just about Auggie. Cause if they do this to Auggie, cause they haven't done it to a special needs kids and families for the longest time, I remember him telling me about one kid that had diabetes and they, cause they didn't even have a school nurse. And they were like, well, we don't have a nurse. So what are you going to do? Not realizing that they're supposed to have a nurse there that they can't tell a parent they don't have a nurse that if you want a nurse, you're going to have to leave the school. No, that's not what you tell a parent because that's not how the law works. You have to have somebody there to be able to help the kids. And they just were not, they just were not doing that. And they just cause part of it was that they couldn't afford it. I remember parents saying to me, well, if they have to pay for all the, and they had to pay for PT, OT, adaptive PE. Speech they all had to get all of these devices. They had to make sure he had an eye gaze device for school. They had to make sure that all these things were in place and all those things cost money and they didn't. And even some of the parents came to me: [if] they have to spend all that money on Auggie, they're not going to have any money left over for the kids to knit. I was like, fuck that knitting. I was like, my kid is allowed to go to school. Just like y'all kid is allowed to go to school. You're not going to tell me that they can't afford to buy knitting needles for the kids and have a ramp and have making sure that they are properly providing my kids with the stuff he needs. Like No, the services he's supposed to get at school. No, I'm not. I'm not trying to hear that. And so that's when me and some of the mom group fell out because I was just like, no.
LJR: And you wanted Auggie’s friends to understand what was going on, too, right?
NCC: Before Augie brought a wheelchair to school,I told the teacher that we need to tell the kids, well, I'll use the wheelchair. And that we had a little group meeting where we sat with the kids and I told the kids that Auggie had a mutant gene in his brain. So like Professor X and he was going to have to be in a wheelchair, but he was still the same Auggie. And they were like, yeah, we remember when Auggie used to climb the trees. It doesn't now you can't climb the trees. And then I was like, yeah. And it's gonna to make it so it's hard for him to walk and talk and things like that. But you know, he's still the same and the kids got it. And they were like, is he gonna die? And I was like, well, everybody's going to die. You know, you know, and we don't know when, so, you know, it's just, you just be happy and be friends with your friends or whatever. And we had a grief counselor come when I was doing that and talk to the kids. But we hadn't told the parents about it beforehand. The parents were pissed. They were like, how dare you talk about your kid's illness in front of our kids? And I was like, listen, you can talk about his disease with any of these fucking kids. He wants to, there's no law. And actually it's against the law for you to prevent him to talk about his disability.
Number one, number two, he has a terminal illness. And if the kids know, and it's because you haven't even told them that grandpa died, you told him that grandpa, because this was an actual thing. One of the parents had said the grandpa had moved away and then tell that kid that grandpa died because they didn't want to talk to that kid about death. And this is when they went to third grade and I'm like, that's on you, but I'm not going to have my kid knows what's going on with him. He knows his disease. And we're not going to pretend that it is not happening just because these are things that you don't want to talk to your kids about.
And so then we started having parents, parent groups, where I would talk to the parents. I went to the first one where the parent, because I couldn't, I couldn't deal with it because the person, basically, they were all crying because they had known Auggie since he was in kindergarten. Cause he's been in the same class with the same kids from kindergarten to eighth grade.
So they kinda, they kind of couldn't deal with it. And a lot of them started crying. So I started coming to the meetings and actually the meetings got better. Cause it was better able for them to deal with it.
And, also we had to put protocols in place. Cause then later on, August started having seizures. The difference would change. The reason why JHD is worse than HD is because even though it's like, Parkinson's plus Alzheimer's plus ALS plus dementia a plus altogether, the kids also have epilepsy. So he didn't have his first seizure until 2017, but that was when it really protocols to had to be put into place because he was sometimes have seizures on campus and, you know, seizures are bad, but yeah. So so eventually so that's when I did all these baby bucket lists, not long after that, I took him on a four month trip because he wanted to go see the pyramids. He had a whole bucket list full of a whole bunch of crazy shit.
LJR: But you did it all.
NCC: But we did, we did everything, but go see the great wall of China. But we did not. We went to the pyramids, we went to tattooing because he's a star wars buff. So we went to Dubai and he got to ride around the desert. But we had a great time over there and it, and we got to fly an airplane himself in San Diego. He got to ride a helicopter around LA with his best friend. He just had a party in the middle of the street. He just had so many, he had his birthday party at Disneyland more than once. He got to be a Make-A-Wish kid and he got to do all these things. And it just, so that really is how I was able to really deal with having Auggie sick is that I turned it into less of something awful and turned it into this is we're going to turn it into an adventure where we're going to do things that nobody else your age is doing. And no, nobody else my age is really doing all. He's done more and seen more than a lot of people see in their whole entire lives.
Like he had his birthday party at the presidential suite at the Ritz Carlton one year, in downtown LA with his friends and the kids just had a great time, even though they were up late hanging out and then in the middle of the night one of the kids came in and were like Auggie’s having a seizure because he was so
LJR: Happy.
NCC: He was so happy. He hadn't had enough sleep. So he's totally started seizing and people always ask me, what, why do you let him do things like this? And it's like, it's, for me, it's not about quantity. Quality of life. Life is it's a policy of life issues. So he's in the president of the suite of the Ritz Carlton with his core, best friends in a hot tub, running around in his wheelchair, doing proper wheelies, running through the halls, having eaten chocolate are two details. Having the time of his life. This is his dream. Like why would I deny him this? Just to keep them in a room, safe and secure where he had there's no joy? You know, cause life is at the end of the day. It's about life is about love and joy and happiness. And if you don't have any of those things, it doesn't matter what other things you have. And then the day at end of your life, it's going to be empty. You're going to like, they tell stories all the time about people at the end of their life who did all these who didn't do anything. And I'm like, I wish I had done spent more time with my family. I wish I had loved more or something like that. So I want to, I want to make sure that all these life is filled with those things. So, so yeah, so that's why I do that kind of stuff.
And so cause I knew there was gonna be a point where, as he is now, where he isn't very verbal at all, he can only say a couple of things and where he cannot, he cannot like move parts of his body fully, you know.
LJR: Yeah. Yeah. And it was also during this time that you decided to go back to school to create and build devices to help people with special needs and disabilities, right?
NCC: When I was like up all night reading things, a lot of stuff I'd be reading would be like research studies and NIH. That's how I found out about some of the research studies Auggie’s in right now, and things that would help him later on specifically his, he was in several, I actually Auggie’s in two separate research studies. He's in two Juvenile Huntington's disease studies that are basically observational. So we went to the University of Iowa two years in a row, so they could see him in person. He did a study with Elizabeth Manheim. She did a study specifically focusing on him Huntington's disease and a family dynamic and how Huntington disease affects families and affects how you deal in terms of PT and OT and things of that nature. I was in a study on how black people deal with stress.
LJR: The poster child.
NCC: Which is like a whole other different study. And currently he's in another study on Deep brain stimulation, ‘cause in…‘cause I'll get having to have a seizures and the seizures have been getting worse and worse.
He was having like anywhere from two to a hundred seizures a day, anywhere from a couple of minutes to an hour, it was really bad. And I'll give you the little slightest thing would cause it. If he was happy, he would have a seizure. If he was sad, he would have a seizure. He was mad. He was having a seizure. If somebody scared him, he would have a seizure. If he was too hot, he would have a seizure. He was too cold. He would have a seizure. It was just, and you know, the main cause of death for kids with JHD is either choking or seizures. So I got him a G-tube in 2018 because he was losing tons and tons of weight because he has dysphasia. So his throat is closing up and he didn't want to eat because it hurt him. And that was actually a big issue because he was receiving some services for through the regional center and when it came time to do his G-tube, I really had to think about it cause Auggie didn’t want a G-tube. And I had already, already said I wouldn't force him to get anything. And so it was like a thing I really had to think about, but because, and his doctors understood that and were totally behind it. They were like, yeah, decide if that's something you want to do. But then it was also like, if he doesn't get this G-tube, he is going to starve to death, you know? Cause he's getting really skinny, but it was just like, he doesn't want it. I don't know the doctor say he can have it, but it, but it definitely, if he doesn't get it, he's going to die quicker than if he does. And and I just, it was just something that I really, really, really had to think about. But during this time I was trying to figure it out, his caseworker at the regional center filed a CPS case because I hadn't, because I hadn't yet agreed to the G-tube surgery, which was bad for them. Because then I filed a complaint with the department of developmental disabilities for California. Cause also this is state of California. You cannot force a parent to give a child a G-tube who is terminally ill. So that created a whole other thing and they had the wrong one with that one. So, and then I ended, I did end up getting the G-tube for Auggie because at the end of the day, I could not watch my child starve to death. And that was what that was. And I just couldn't do that. So so as he got to do too, it was fun and actually ended up not being as intensive of a thing as I thought it would be. And at the point now where he doesn't even need to go see his gastroenterologist once in a year, because I changed his G-tube myself, because one of the things that since being obvious parent is I had become a supernurse. I can do many, many things. I can change the G-tube. I can change his catheter. I irrigate him. I irrigate his bladder. I do all these things. I change his wounds. I actually have to teach nurses how to do something sometimes, but sometimes some of the LBNs don't know how to do it. Or I come across an RN who has been, who has learned how to do in the school, but has never actually done in their practice. I’ve had to teach two different pharmacists how to dial up his seizure management because they had never done it before. And so it was just things that people have to learn. But in one of the main things that I wanted Augie to get some things in his brain to help with the seizures, even before they started coming, like in 2014, when they were still testing stuff in mice, and they were like, you know, this really helps his dystonia, which he had, but it also some of the mice that get the surgery don't have seizures anymore. And that's the thing about research that kind of sucks is that from A to Z sometimes be forever. That's why, when people are complaining about the vaccine now, how, oh, they haven't studied it long enough. It's like, how many people do you want to die before you start using stuff?
Cause I’m one of those people, they have something right now that they could give. They tell me that for my kids to live longer, if they tell me that it has half arsenic and half crack. And there's only a 25% chance of survival. I would still give it to them because I live in a reality where my kid is actually sick and is terminally ill. So I can't live in this fanciful world where, oh, he might get his arm. I heard, oh, this might happen or this might happen because I know what running from death and dodging death looks like. And so I don't play those stupid games.
And so he got approved for that surgery in July and August FDA finally approved DBS procedures, but he was already scheduled for surgery. He had three brain surgery in September 2019. And since then his seizures have been A-OK he'll only have a seizure. If he’s had an infection or if he's in a super-intense pain. So, and so it rarely ever happens. We have to keep them charged though. Cause he has to stay charged and then I have to turn them up.
So I turn them up on one side to help the seizures and I turn them up on other side to help his dystonia. Eventually was one of the things I talked with Dr. Singer about eventually when we get to a point where you can just turn it on and it can be all the way up and it'd be fine, but it's electronic volts in the brain.
LJR: So he went [from] like Dr. X to, to Iron Man now.
NCC: Yeah, pretty much
LJR: So, you have read up and made yourself an expert on what is available and what is almost available but not quite yet, but then you want to get your own ideas out there and push the field. You went back to school to become a developer and then you realized you wanted or needed to get into data science. Why exactly?
NCC: Because one of the things I learned when they were studying Auggie’s brain is that they were reading the data and I wanted to be able to read the data. They took like five terabytes of data from his brain when he was in the hospital for six days to see what was what, and I was like well…and I was looking at all the things that was happening.
This was before Neurolink, Elon Musk’s company was doing when they were first thinking of things and like the code. And I was reading about the different codes they were using and they're using a lot of money, everything in R and Python. And I was like, well, I guess I need to learn R and Python because these are the things that I want to do. I'm going to be able to, for people like Auggie to be able to move devices and move other things with, because Auggie already had been trained on eye gaze since he was in third grade. So he's great with eye gaze. Like he does that now, and he's great at it, but it's like, I want him to be able to be able to do things using your brain with just thoughts.
And so now I am learning mechanical engineering design, so that, and then in the fall I'm going to focus on robotic automation. So I'm going, I'm doing it a bunch of different places. I am also trying to get—my therapist says I got to do more things for me, practice more self care—so I'm becoming a pilot, private pilot. I'm getting my private pilot's license. So every Tuesday I'm in flight school for six hours. So that's something that I'm doing for myself to do to be more…
LJR: Let's say it's for yourself, but I bet there's another reason.
NCC: The only other reason is for like the apocalypse.
LJR: But you'll start airlifting everyone else out because we were like, ah, there's a need. I'm going to fill it.
NCC: But I will say like, even, even though I haven't gone in the air yet, because I don't go on the actual air to do my student clients, student pilot in the air stuff, I use a flight simulator. And I remember the first time I went in the simulator just.I felt such power. And I felt there was this, this thing that came over my whole body that made me feel good. I like to compare it to like the best high I've ever had was doing that. And I was like, oh, and I always wanted to learn how to fly because I like to know how to do things. Cause I know I can knit. I can do other things too. I can read. I can turn you robot into a little sewing machine. I'd like to know how to do things. And so the policy thing, it actually is for me because it's something that I want to do for myself, something I want to learn.
But so long story short, my husband died and 2019, Mike died in March, 2019. And after he had been living in the house, it went all great for at least a year. And they got, which is what the goal I wanted for them is that I wanted to them to spend all the time they had together in the same place, which happened hard when I was trying to do it on my own. So I had to, it took me a while to, to jigger it so I could have both all of us in the house at the same time, because I knew I couldn’t do it by myself. But then I realized that I worked it out with the long-term care insurance and I found the agency. So we were able to do that. And it was great.Auggie loved it. And it was like our little family. And so it was great. And then In January. I remember the hospice cause I'll get Mike were both on hospice. And the reason why they on hospice is less. I remember one of my relatives who was in nursing school asked me, why did I have them on hospice? And it was because I learned something during this whole time and taking care of them is that if Augie has a seizure or something like that, I would always have to go to the hospital or to the emergency room. Now that he's on hospice, I don't have to do that. The hospice empowers me to turn my home until a mini hospital for, at that time, for two people. Now it's only for one person. So that I have all the materials and all the drugs and everything that the hospital has I have here. But it empowers me to be able to make medical decisions in a house. He has an LVN is here 24-7. And if something happens, I like actually there was a time in 2020 to fall 2020, he stopped breathing at one point and I had to resuscitate him. That was actually the scariest thing that has ever happened to me in my life. And I've thought I would be prepared for it. But I was not. I was in here flipping the fuck out, excuse my French. But I was because it was super scary. But he was turning blue and I had to resuscitate him. I remember the first time I breathed into him, nothing happened. And the second time I did nothing happened. And I kept talking to him at the same time and I was like giving him chest compression. Cause you know, I had to learn CPR. To live in this house you got to know CPR. And then, but then the third time after giving him breaths and the chest compressions, he started breathing again on his own. But it was the scariest shit. Like there's nothing. And that's when I that's one of the things I talked to my therapist about, I was like, I thought I was, I’m giving myself the tools to prepare myself for everything that happens. Right. But you can never really prepare yourself for the worst things. No matter how much you prepare yourself, you're never really going to be fully prepared.
LJR: But bad kept piling on. Your mother and husband passed away within a couple of weeks of one another. And yet you kept on. Dad’s with you now.
NCC: took my father and to live with us after my mom died because he has Alzheimer's. So my father came to live with us in 2020.
And so he lives with me and Auggie. Now we got a bigger place and he lives here and even though sometimes he wants to know how did he end up in California with me of all places? Cause he never wants to leave North Carolina, but this is the best place for him. But he has a social life. He goes to his little senior center and hangs out with them during the day and hangs out with other seniors. And then he comes home. Cause it's better for him to be around lots of people. So, but yeah, so Mike died and that was hard. I became a widow, which was something I, I was prepared to be a divorcee, but I was not prepared to be a widow. So it was like a whole other thing. And then it just caused more things to evolve.
So I moved out of the big house we were living in and I moved, we moved back to Playa Vista, which is where we had first learned the first me and Mike I'll get first, came to live in LA in the exact same building. We first came to live in mostly because why this is the most handi[capped] community in the city of Los Angeles. I know because I've been everywhere in the city with a wheelchair, a power chair or a manual chair, and this is the spot and they have a little shuttle that goes around, even though it stopped doing Cobra that goes around and, and travels everywhere. And it goes to all the little ice cream shop. And I always had, I remember I had a vision before I moved here after Mike died, I was just like, you know, after Mike and my mom died. I was like, you know, I just want to go get ice cream. The peace to me and contentment to me is just going to get ice cream every day with my dad and my kid. That's all I fucking want to do. Like I, my aspirations as are mellow, but that's all I want to do. And now I do that.
LJR: And that sounds like the voice inside your head again. In the past when you heard that voice, it would tell you to move on. And now with the data and engineering?
NCC: I started to realize that this is my purpose, that feeling that I had before. It was all going to get old. And I was going to get bored with it that I get bored with that that is not happening. If anything, I get more involved and more obsessed, which is crazy. Cause even all the things I did before, I've never really obsessed with it. It was like, oh, that was great. It was fun. It was cool. But I am obsessed with the stuff I do now. Like I will stay up for days at a time, like literally stay up all night, coding, working on something, knowing that I can fix this problem. I'm doing something wrong, changes a tiny bit. I can fix it and I could just make something happen. That's really great and purposeful. So like I ended up finding my purpose and my purpose at the end of the day, I do want to help people. It's a full circle for me because I am going to help people.
The point is to apply all these things to create devices that will help. And to figure out a way to not just to create devices, but also to create apps, to inform people, to tell people what resources out there that they don't know about.
Because sometimes I feel like, I feel as if the main reason people don't do things is because they don't know how, which is crazy because, you know, we have the internet and Google and people are like YouTube videos about aliens and about how the vaccine make you a mute in or something all night long, but they won't do things to really learn about how to make their own worlds. And I found that they want other people to do those things for them. And so that's what I seek to do.
LJR: Well, yeah, you clearly are doing that. And I, you know, you say that quality of life is more important than quantity, but it's easy for someone to say, like you, who has really jammed in like 17 lifetimes into this one half a lifetime that you've lived so far and you are making the world better for people. And I love that your spirit is like driving you, you know, you said you, you needed to feel like in your heart you're doing the thing you're supposed to do. Well, clearly that is about, you know, connection with other people and helping them find the resources they need and giving them that care. So you are a beacon of light, my dear and so good to share all of this, these amazing I mean, this is, it's like a soap opera that you're living and astounding one and one for good. And we're so delighted that you shared it with us. Thanks so much.
NCC: Thank you, Leslie
LJR: That was Nakiah Cherry Chinchilla, who is a data scientist and engineer focused on the use of data and technology in making significant changes in the lives of people everyday. Her interest center on the creation and development of technology, apps, games and advanced bionics for special needs children, disabled citizens, and underserved communities. Though she has extensive work experience in public relations for fashion and media companies, she has developed hard-won expertise in neurodegenerative diseases, data analytics, assistive technology, digital media, and special education advocacy. She is also the 25th reunion chair for the Dartmouth Class of ’96. All classmates, please note that registration is now open for the in-person event, July 22-24. Go to dartmouth1996.org for more information. And for all our listeners, thank you so much. We are so glad that you continue to join our guests and me, Leslie Jennings Rowley, on Roads Taken.