A Supportive Podcast for those Dealing with a loved one with Memory Loss

A Supportive Podcast for those Dealing with a loved one with Memory Loss

Summer Reading with Gray Matters

Summer Reading with Gray Matters

00:00:01 – 00:05:04

(Intro)

Remember some reading lists? Well, I’ve got a recommendation for you. Gray matters is a novel that comes from a troubled mind from first hand and family experiences with campaigns and coders,democracy, and dementia. Can the digital networks that record our footprints hold us steady when dementia threatens to push us off the path?The question has real stakes for data analyst Charlie Sanders, his best hope for a father succumbing to Alzheimer’s comes from assistive technology that Charlie helps design. Despite early successes Charlie has growing doubts about the motives of his colleagues. His worries grow when the company takes on a clandestine client, will charlie keep his father and his country on track or turn a whole generation in the glitches?

(Sponsor Plug)

This episode is brought to you by family history film. Visit myfamilyhistoryfilm.com to find out how they can preserve your family memories in a fascinating documentary film.

(Jennifer)

 Welcome to fading memories a supportive podcast for those caring for a loved one with memory loss. I am excited today to have John Gastol with me, he is the author of Gray Matters. It is a novel that is part politics, part Alzheimer’s, and part science fiction, and if you think maybe eh i don’t know if I want to read that, I am a reader and this book really grabbed me. It’s been less than a week and I’m almost done so thanks for joining me John. 

(John)

Hey! It’s such a pleasure to be here Jennifer. I’m excited to be a part of your podcast this week. 

(Jennifer)

Thank you. So, well first I want to say thank you for writing such an entertaining book. 

(John)

You’re most welcome. Looking back on it, I was asking myself why did I write this book? And the the impetus originally was Sarah Palin. That when Sarah Palin was nominated as the Vice President, I’m a Democrat my parents both ran for Congress as Democrats. So I’m a loyal party member but I thought what if the Democratic nominee had chosen a vice presidential candidate who was a little out there? Would we sust say, Hey, it’s our  party, it’s our person and that inspired one of the characters in this book who is basically an Alzheimer’s denier. But at a deeper level, it’s not really just my response to Sarah Palin. It’s actually me processing Alzheimer’sand dementia in my own family, most recently my father who passed away a few years ago. But then also my grandmother’s both had different forms of dementia and I think it’s a chance for me to process that and talk about how people respond to the experience of that disease in their family and  in their community. 

(Jennifer)

Well, that was my other question, what prompted you to write the book? And then obviously you have a connection to Alzheimer’s so, tell the listeners a little bit about yourself because I think your background might be a little bit interesting too. It’s a strange background. I grew up in San Diego and I know you’re just off interstate five a few hours and I was raised  quaker by my parents. So it’s not a coincidence I wound up in Pennsylvania at the Penn State University right in the center of the state, the quaker state. But I had a  funny upbringing, our family was a family of arguers right if you know, my mom wound up serving on the school board, one of my brother’s served on the school board. And my other brother is very smart about politics but we argued all the time,  dinner conversations could get very heated and  unpleasant honestly. Meanwhile you have this quaker meeting influence right, the quiet, striving to reach consensus and somewhere along the way I became a PhD. studying democracy and deliberation. And what I try to find are ways of getting kind of citizens together in a way where they can disagree frankly and honestly but also really deliberate and try to be rational. And Gray Matters is a little bit about the reality that is the opposite of that. 

(Jennifer)

And when did you start writing this book because it’s based after the twenty twenty election,  I know the books published this year. So when did you start writing it? Because we’ve discussed offline that there’s some things that are actually starting to come true.

(John)

 We have to go back back right to Sarah Palin, I mean we’re  talking about like going back ten years here and two thousand twelve was when I finished the first draft. And it’s weird to think about things like Edward Snowden hadn’t become part of our story, you know  Dave Eggers the circle hadn’t happened.

00:05:05 – 00:10:04

So many things both real and fictional accounts of our world weren’t a part of our vocabulary and so one of the things in the book for instance is they’re dealing with an Internet they call the loop. Which is kind of intentional like it might interrupt our podcast and say to you hey, I’ve got a great idea for your next guest and you didn’t ask the Internet anything. But you have kind of gotten to a point where you don’t really have a choice if you want to use it, it’s going to be in your life and so the idea that we might have this third party kind of nudging us not just to choose a movie but telling us you know where to go shopping or what to buy and what to do. And that’s a big part of the story because if you think about it, part of what dementia is about is losing your sense of sometimes who you are and what you want to do. And what if technology could help you seemingly stay on your path? Well, that’s not so far fetched is it?

(Jennifer)

No it’s not! I’ve had informal conversations with people about technology and what could it may be due to help those living with Alzheimer’s and dementia but interestingly in the last three or four months I’ve had two different interviews not for the podcast, with students working on an app for diagnosis. And the first group, they were from students from the University of Massachusetts, UMASS. And I was a little shocked I had this interview yesterday and they were high school students on a summer project from just over the hill from me and I’m like you guy make me feel old because my daughter’s twenty eight. So high school kids are like whoooo; My niece is going to be a sophomore so you know when I think of High School kids making an app for diagnosing Alzheimer’s, and then you know and I’m talking to these high school kids and  this is basically like summer school for them, except their online. And I’m reading your book and I’m like this is getting a little scary creepy here.

(John)

 Well I mean think about it, so the book is partly about a son whose father is starting to lose some of his mental faculties and the son is a PhD, a big data number cruncher and he pairs up with some folks who’ve had some real success in kind of the cutting edge of high tech. And they say, you know, maybe we can have a technological solution to problems like what your dad is facing and they’re all pretty young right? They’re they’re far removed from the life experience of Barry is the character whose Barry Sanders in fact, coincidental name with Detroit lions running back. But not total coincidence since I’m a huge Detroit Lions Fan but you know Barry’s problems are so distant from them that for his son it’s very personal but he doesn’t  necessarily –  I don’t think he’s going to be able to accept what’s happening to his father. He just wants to intervene but the others who are intervening they have distance from it. They can be kind of cynical right, joking about it they can be a derogatory. They see dollar signs, right they think oh my God, you scale this thing up.

 This is crazy right and if we could automate it, it would cost us nothing. Essentially, just let the loop do it you know maybe maybe that’s what this could lead to but I do think that the idea of high school students making apps for it is  sweet. And you know we really do have a lot of young tech entrepreneurs but you do worry about the distance between the innovator and the person who’s ultimately going to hopefully be benefitted by the product and a  good company would be more careful about that then maybe Gray Matters, the company that is the title of the book. Maybe that maybe they weren’t as careful about that as they could have been.

(Jennifer)

 Well, the next time somebody asks me to fill out a survey about my caregiving journey. And then they wanna, you know because they always ask oh if you’re interested in follow up you know put your phone number in here and I’m like okay fine. Maybe I’ll ask them if they’ve been caregivers, or in case of teenagers, if they are helping their families in caregiving. Because that’s obviously a really good point that I didn’t catch yesterday.

(John)

 Well, you know I wrote Gray Matters like I said partly from the experience of Alzheimer’s in my family but I haven’t been the primary caregiver. When I was a child and both grandmothers had dementia I was you know just kind of understanding a little bit about what was happening. I remember grandma Francis in particular would call multiple times a day and the conversations would start to repeat and there were four kids and so we would kind of.

00:10:04 – 00:15:09

Rotate the phone but some of our stories were super compelling. She  was actually the elementary school teacher of Ted Williams, the baseball legend. 

(Jennifer) 

Oh cool! 

(John)

 She would get mad at him for you know, making him stay after school because he wasn’t paying attention because he would just buy baseball all the time. Well, that’s an amazing story right now as a kid and a big baseball fan I wanted to but you know what? I’m hearing the the first five, six times fine I had to rehearse it I have to repeat the story the rest of my life, but the twelfth time and the twentieth time. I wasn’t ready for that right so when it hit my dad years later, right now I’m a grownup I’m not living in San Diego. It was the rest of my family who is really taking care of him my mom in particular and he passed away in our home. I got to have some very sweet memories visiting the last time and we can share some photos at some point but I think that may come through in Gray Matters a little bit because I am like Barry’s son Charlie. Who is you know in Seattle while his dad’s back in Detriot and is trying to help but he’s kind of distant from him and his life.

(Jennifer)

 And he seems a little bit in denial. He’s like a for lack of a better term kind of traditional male that wants to fix the problem and he’s got this technology background and the smarts to maybe fix the problem. Which as I said, I’ve got about fifty pages left and I don’t think the problem -well we know the problem didn’t get fixed. And then some of the other characters…

(John)

There were some promising results, there were some promising results. 

(Jennifer)

There were. And I know you’re like I wish I could tell you what happened.

(John)

 No. No. No. No Jennifer what I appreciate is that you see right through what he’s doing because I think most people who imagined that you know you met him socially and he told you what he was doing you would say, you’re devoting your career to trying to help your dad and people like him. That is so courageous and thank you for your service to the community and for this but, you see right through it you’re like stone cold denial buddy. I mean it’s sure you know it’s nice. Good effort but maybe that’s not what your dad needs maybe that’s not what you need, but it’s what he knows right? 

(Jennifer)

Yeah. Well you know it’s what a lot of people go through. You know it’s like I’ve talked to people who have had family members that think well you know if I could just retrain my husband or my mother my whatever. You know like retrain some life skills, you can’t retrain a dying brain. The brain is dying. You have to accept that. The person that needs retraining is the caregiver unfortunately. That was not the fun part. And I just I was in a zoom conference this morning with the Alzheimer’s Association put on in his one gal was retelling the story of a client of hers that spent three hours a night trying to retrain her husband to rebalance the checkbook. And I thought Oh Jeez. That’s like all kinds of painful and frustrating because balancing checkbooks is no fun. I’m not a math person. So I leave that to my husband because he was in banking  for twenty years. But it’s like, why would you spend three hours a day trying to force somebody to do something like? No no no no. So I’ve met people who just they’re such nurturing souls, that’s their personality, and just they do everything to help and care and love, and then there’s people like me that are like I’m trying really hard to give you good quality of life but I got draw the line here because you’re making me insane and my brain is turned into mush trying to deal with you so I’m out. So I’ll be back in a couple of days. So there’s a variety of caregiving personalities and Charlie taking care of his dad in the way he’s doing it. You know he’s trying to fix the problem when you can’t fix the problem unfortunately.

(John)

 Fixing it from a distance I mean using a call center in India, right? That’s the first thing. On the first day at Christmas I gave you a call center. Well, let’s take another character in Gray Matters right ’cause I -It’s funny I  really didn’t,  I mean to some extent I’ve heard authors say this before that they imagined the characters.That things get in motion and the story gets away from them. Right? It becomes something  and the Sarah Palin inspiration remember we do have to saddle the Democratic Presidential candidate with a strange running mate and Mahatma Golden a Californian, right you’re responsible for this guy. You know the mayor of Santa Monica, in this fictional world. And you know  his best selling book was Be There Then about being  in touch with your future self right and look  to the future and he absolutely does not believe if you believe him that Alzheimer’s or Dementia is a real thing. That its seniors connecting with future generations in some kind of psychic.

00:15:09 – 00:20:01

bridge. And you know what is that? Is that a gesture of love?Is that compassion?Is it  understanding? It’s incredibly popular and at the time, it was stone cold satire right and Marianne Williamson comes along and I’m like whoa hold on all right.If she gets the nomination I might  have a book here. You know as the veep, shes gotta be the  Veep. But here we are Jennifer, we’re in a world where people don’t want to accept medical facts. You know I think I was thinking of the Anti- Vacciners,right more kind of a left wing sort of thing but people don’t want to accept the coronavirus. A lot of people don’t want to believe that we really could have a pandemic that we can’t understand right. Some people get sick and die. Some people are fine. Right? What’s going on? We don’t wanna believe it well, Mama Golden absolutely does not believe in dementia. So people have so many different ways of responding to this disease. Maybe there’s fear behind a lot of those responses, I wonder.

(Jennifer)

 I think so because I think that’s kind of what’s going on with Covid. Up until -like my county the last time I checked I think it’s been about a week and today is July tenth. We’d had like seventy nine deaths in county of about three million people. So I guess I cannot do math, but that’s a fraction of a  percent , it a fraction of a fraction of a percent, but again I can’t do math. Yeah put some dollar signs in front of it and I can do much better. So we’ve been social distance gathering with our best friends that live two doors down from the house that we abruptly moved out of in January and they’re daughter-in-law works at a daycare and she thought she’d been exposed. She got tested. It was negative or the person that they thought had it so okay that scare was over. I did not know anybody who had gotten sick. The closest gotten up until about a week and a half ago was my husband does meals on wheels delivery and  one of the directors had been exposed but he hadn’t had contact with her. You know Kinda like a little close but okay while a week and a half ago.

 So this was like the second of July, our friends basically said, they’re daughter-in-law was sick and she was getting tested and they were really really hoping it was the flu and I’m like  I have never really wished the flu on somebody, well turns out she has covid.Their ten month old granddaughter has Covid and their son has Covid. So it’s like okay this is very scary and they’re in Virginia, we’re here in California so my friends can’t go help. I’m a little shocked she hasn’t jumped in the car driven across the country already because that is for personality. And so it’s you know for a while it was like in the very beginning it was like I’m gonna do what I need to do to be safe so that I can continue to visit with my mom. Well my mom fixed that and then it was like, okay well  fortunately Mother Nature rained on us in late March. So it was kind of easy to stay in and then it gets nice and all of a sudden it’s like I’m really tired of being in the house and I don’t know anybody that’s been sick or died. Hey,  I’m out here in the city of sixty five thousand. So long story short it’s like I didn’t know anybody that got sick and now I do. So it’s like it’s it seemed like something that was happening outside the bubble and I’m like do I need to stay in this bubble because this bubble is getting really boring.

(John)

 Right but even even when it does reach you and the physical fact and the medical facts of it but when it reaches you, what you make of it is still an open question. So one of the things in the background behind Gray Matters, you might remember that Charlie I mentioned does kind of big data analysis right? He thinks he can predict everybody’s attitudes and behavior and so on. Well, that’s heavily influenced by a colleague of mine Dan Kahan at university who leads something called the cultural cognition project and the gist of that is that you and I and everyone, we have these cultural values that we hold onto. They a little bit define us. But they have a tendency to shape how we see the world if something has cultural significance to our group well, then we figure out what we’re supposed to believe. I remember I was doing a survey with Dan and Don Raymond colleagues on guns and attitudes towards guns and gun ownership and gun regulation, and so on and I said, you know what if there’s a what if theres an incident like a national innocent right in the middle of the survey and Dan Quite prophetically said won’t matter. Right those who think guns should be regulated.

00:20:01 – 00:25:03

We’ll say, Yup, that’s what I think and those who think we should have more concealed carry and so on to defend ourselves will say Yup. The fact of the event  won’t matter right people have already decided what they need to believe on this issue. Facts be damned one way or the other right and with Gray Matters that raises an interesting question. Let’s say that you yourself subjectively recognized that you’re starting to experience dementia and you want to still be relevant publicly, politically maybe you hold office or maybe you’re just a voter, right? What if there was a technology that could use that bias to keep you steady? Right. You’d never change your mind again. You already  know what you believe about everything as long as you’re leaders have told you what to believe. Well, we’ll lock that in for you so no one’s gonna steer you wrong right that’s an interesting offer.

(Jennifer)

 Yeah. 

(John)

Alright its appealing in a way but it does mean you’re never going to change your mind again. 

(Jennifer)

People don’t change their minds too readily so I can see that as not being a terrible negative. I would say, not changing my  mind over not having a mind.

(John)

 Right okay and now let’s turn it around a little bit. As you know what happens in Gray Matters. What if you create this assistive technology and you’re the son or the daughter of someone who’s having trouble, but they refuse to recognize it. They deny it  themselves and they’re becoming an inconvenience to you.

(Jennifer)

That sounds familiar.

(John)

 What if there was a technology? You could give them in quotes, that would settle them down. Right. Go ahead.

(Jennifer)

 Well, now we’re talking about medical ethics which I think we’re decades behind talking about as it is; medicine and technology you’re not keeping up with each other.

(John)

 Absolutely. But those are the kinds of temptations that Gray Matters raises partly for again for weary or busy caregivers  they might view it as something they can do for an elder. And also for themselves. 

(Jennifer)

Yeah. It is very interesting because I just got into the part of the book that you’re kind of referencing. So it’s crazy. So you had photographs of your dad that we were going to screen share, which again, there was another episode where I described what I was seeing, but you definitely gonna  want to go to youtube so you can see them. And we can do that. 

(John)

You actually can enable screen share I think that’s  something you’ll do on the settings and while you do that, I’ll just give a little background. So my father was a geologist at Sanyo State University and we travelled in Mexico a ton when I was a kid you don’t say “Yo hablo espanol?Hasta bien”. You learn some Spanish, you learn the accent, and so I picked that up over the years. And he became interested in more than just the geology of Mexico and Central America  more broadly, he became interested in kinda the anthropology and the history of the region. And so later in his life he started to think creatively about like oh gosh I wonder what I’ve seen, what I could and we wound up taking a trip to visit – I I don’t have the screen sharing enabled unfortunately – Mayan Ruins throughout Central America. And so that’s kind of an exciting experience we got to have together. And already at that time, he had suffered from Parkinson’s for years. It took us a while to diagnose it, my mom ultimately was told he had it by a doctor friend at a party. 

(Jennifer)

That does not sound fun. 

(John)

She had not seen coming, it was very gradual and I think you could say the same thing he ultimately had lewy body dementia. It was similar in that the Parkinson’s was causing symptoms that didn’t make it as easy to recognize the onset of dementia. So that was also a little challenging to pick up on.

(Jennifer) 

You should be able to share the screen now. 

 

(John) 

Alright I’ll give it a shot here. Let’s see. There we go. Yeah,no  we’re good to go. So there we go. You got a screen share now. Yes Jennifer.

(Jennifer)

 Yes. I see you and your dad.

(John)

A Mayan pyramid actually, at the at the base of one. Now he was not up for climbing them. Right, my mom invited me to join on the trip partly to help take care of Dad. but, yeah climbing Pyramids at that point was out of the question. But man he was a field geologist, which means he’s pounding on rocks not just sitting in a lab.

00:25:03 – 00:30:00

and he loved it. He loved all the stuff you saw now the other photos I wanted to show are from a San Diego Padres baseball game. We had gone to Jack Murphy Stadium, the old stadium for many a Padres game.  Dad was a passionate fan but when dad got very sick at one point, I sent him a poem, he was a poet, and the poem basically said Yes right here you’re you’re you’re almost died well as kind of a rip off. Tell you what, if you get better, we’ll go see a baseball game at this dumb new stadium they made downtown. That’s my deal. So don’t don’t die. Let’s go see baseball. And so when he was finally in good enough condition to go we went. And saw the game and you can see how handsome he is ridiculously so  and you can see a little bit of Parkinson’s mask right but that smile that that clever smile he’s got. He just had a great time at the game and that was that was two thousand seven, five years later he passed but like I said, the whole family got to be with him. Even some of his former geology students who are now professors in their own,  actually happened to be there at the time of his passing. It was really beautiful. That was very fortunate. He left quite a legacy.

(Jennifer)

 It’s hard to lose somebody in this pandemic time because it’s been four and a half months since my mom passed away and we haven’t had a celebration of life or a funeral. It’s frustrating. And I thought Oh we’ll be able to do a celebration of life in the backyard of her home that my sister grew up in and I spent most of my childhood there. We moved there when I was three and then she came along the next year. We’re selling it because it’s a really old  house and we don’t wanna  get saddled with a money pit. But now with the this, not a second wave, but it’s another wave of this disease. I’m not even sure that that’s an option. So it’s very frustrating. So I’m glad that he was able to have more people around ’cause it gets to the point where it’s like is it worth doing this months and months later and are people gonna bother? Have they moved on, have  they not. I don’t know.  I need to talk to some of her previous friends.

(John)

 Well as we  were discussing before we began our conversation today, we are in what you could call the endless now, and that is so relevant to your situation because the advice I could have given you a second ago was well, you know what you should plan something. Well, plan it  for when John? Right. You know a month from now. Two months from now, next spring. We don’t know. It makes it so hard I’m sure Jennifer, your creative you’ll come up with something. But you know it won’t. It won’t be what you would have wanted. 

(Jennifer)

Well, I did do a tribute podcast episode for her. It was my daughter telling stories, my husband telling stories, and a friend of hers. And I had intended, well I did do it, they’re separate pieces. I made a video slide show that was supposed to replace the video on the podcast like we’re doing now. Because  my daughter didn’t want to be on camera and her friend was not super thrilled with that idea. So I’m like okay two thirds of people don’t want to be on the video. So I’ll just do this slideshow, well the slideshow  is like forty minutes or forty five minutes and the audio is an hour, and it’s like, okay well, that didn’t work and that happened to come out at the very end of my second year of  podcasting. So it tied in very nicely, and it was cathartic and helped a lot and it was really fun to listen to the stories and and reminiscent do all that good stuff. But I still feel like okay great, that was for me. My mom would appreciate it, I don’t know. All I can say she’s downstairs in the box just kind of hanging out waiting for whatever until  she can go with my dad in the military cemetery that’s not her. Life is just too weird. I’m a planner. I was one of those eighties kids where they’re gonna have your short term goals to get to your long term goals have this massive life success.And the more I planned the more god laughed and said, no no no, you’re not going that direction you’re going this direction. 

(John)

 So, well yeah. You probably remember a plot detail regarding planning in  Gray Matters where Alice is the sort of the main entrepreneur that Charlie works for, and she’s actually she’ll send emails to herself in the future right that there is literally web technology that lets you do this and send these out to yourself.

00:30:00 – 00:35:08

I strongly recommend it, it’s it’s really interesting to get an email from your past self but they tell the story of someone who had a planner right. That had everything planned out of that’s this is one of my daughter’s going to get married, like who is she gonna marry, I don’t know who she is going to marry but we got the wedding all set. And then you know, here’s my funeral. Right. This is not a good season for planners right? The world we’re in and the world in Grey Matters. It will do violence to your plans. Right. It’s just an illusion, but it’s such an appealing illusion, right? It’s that same illusion that you know maybe we know everything we need to know. And we’re just we just want to stay on the path, but the world is gonna change right. The Soviet Union is going to collapse. Right the climate is gonna change in ways we’re having trouble predicting, right? 

The world is the physical world, not just the social world, is changing right under our feet. And that’s one of the hardest things I think for us to face is that you know what, we’re going to have to talk our way through this. We’re going to somehow collectively, if we’re in a democracy, right we’re going to have to figure out a way to talk to each other even when we have some different values and  priorities, right? Some are more concerned about liberty, some are more concerned about public health and, how do we talk to each other? And another real world thing in Gray Matters. There’s a little process described in there where citizens deliberate on ballot measures and then pass on their advice to fellow voters. And the worst possible person seems to join that group. Well, that’s a real thing in Oregon right right up again, let’s drive up interstate five a little further. There really is a citizen’s initiative review in Oregon, and they’re now using that same process to try to design a response to Covid. Right,they’re going to have this assembly over the course of seven weeks and yesterday they had their first meeting, it was keeping up a little too late at night. But there you had people who have really different experiences right? Someone who’s unemployed, someone who has a small trucking company right and  they’re all talking through what should we advise our legislature about these kinds of trade offs? This impossible problem still requires a response. You have to do something. Well, what can we in our collective wisdom say and that’s that’s a very different kind of politics than what you see in the news every day that drives us crazy. But imagine if we could do that right. 

(Jennifer)

I did not know Oregon was doing that and my first response is decision by committee is generally terrible. But if you’ve got people with very different backgrounds, very disparate . worldviews. They come together and basically have to hammer out something I mean it can’t be that horrible. So now you’re gonna keep me up at night dwelling on the one because I realize that was actually a thing. I just thought that was fiction in your book. 

(John)

Now we’ll call it the dips in the book, the dips, the deliberative initiative of the panel or something. But yeah no, it’s based on an actual thing. I’ve actually spent the last ten years of my career, remember I’m a professor , this is my debut novel. I’ve never written fiction before, I’m very excited for Jeniffer that you’re having me on but this is a new thing for me. What I’m used to talking about is research and I’ve actually studied that process in Oregon for ten years with National Science Foundation funding on trying to figure out whether as you say, the committee failed. Would these citizen panels, and  there have been plenty of them now since two thousand ten, how do they do?

 But then the second question is does anybody read it? Right because their job they get to cheat in a way ,they don’t have to tell you what to do on initiative seven thirty two. They tell you what it is and what you’re choosing between right,  what is a yes vote really mean and what does the no vote mean. California I remember I grew up in San Diego I know about the voters guide, that thing is a phonebook right? Imagine if you had one page written by citizens who had a whole week right and get to hear from both sides of the issue. That might be a useful read, right it’s not written by the advocacy group on one side or the other though that they heard from them right this is your fellow citizens saying this is really what’s at stake. Actually that is the nonfiction I have out this book that book already came out in January called Hope for Democracy and the joke about that title is my co author and I debated for months about whether to put a question mark after hope for democracy. Lest we look completely naive but we had the courage of a colon. Up For democracy subtitle. No question mark, no question mark! Gray Matters is maybe a little less optimistic.

(Jennifer)

 It’s just the reason I enjoy it is it’s an easy read. You know it its not too – the descriptions of inanimate stuff like scenery. It’s simple enough that you can draw your own picture in your mind, you get a picture of the characters but and I was just telling my husband this last night and I cannot remember the author’s name.

00:35:08 – 00:40:12

It was based in the midwest  like  Minnesota and he wrote these beautiful books they were based with owls. He was probably a vet, people will probably know who I’m talking about but I’m terrible with names.

(John)

 So this isn’t all creatures great and small.?

(Jennifer)

No, this author wrote many novels. And I read some of them but like he would have whole chapters describing the beauty of where the setting was like literally thirty or forty pages. You could literally skim it  and basically skip like every third chapter because they were descriptions and it was like I have my own mind, my own eyes, I can paint the picture in my head. Thanks don’t mean this detailed descriptions and they were they were beautiful. It was  beautifully written, but it was just too much. It was like, okay can we get onto the story party again? 

(John)

Well, it’s interesting you say that because I’ve worked with folks on this book over the years and one interesting insight I was given that’s an  universal insight about writing, which is that in in a good story, the cities that the location sometimes are you can think of it almost as a character, and in this case, it’s it’s really Seattle,  Detroit and a city in Gujarat, India and  little bit Washington D.C. But you’re right they are secondary characters and I’m most excited about the people, right the relationships among the people and the other thing I do as a professor, I’m a  political communications scholar. But I also study small groups and I  study group behavior. One of my earlier books was about the jury system and what it’s like to actually be a juror. How does that affect you in the long run? Believe it or not we hadn’t really looked at whether being a juror changes you as a person, it turns out it can make you actually a better democratic citizen. Just a more engaged, more concerned person in so many ways. But this book is about a small group, right, the dynamics of this group that is creating this company but they have very different motives right and you’re trying to figure out. 

Okay now how is this person connected to that person? Is there romantic interest here? Is that professional? Can he really trust her? Can She really trust him? Right and rotating the point of view just between these main characters was very satisfying to me right that you get to see the perspective of Saily,  the woman in India who runs the call center right. And you get to see Charlie’s experience of his dad, and then the one point of view that stands out for people is Barry. The father who opens the book and he opens every section of the book with his first person experience and the confusion that ensues when he’s trying to sort out his own thoughts from the little device on his ear where there’s another voice talking to him, and that gets increasingly confusing for him. But again, by rotating point of view, you even get to try to experience Barry’s experience of dementia and a tip of the hat to Bob Shroff, a colleague of mine at Penn State who’s an applied linguistics professor who specializes in language and dementia. And he carefully read through the sections for me and gave me a sort of fact check on iIs this is a natural progression of the way people speak and understand language as they have increasing difficulty cognitively. Yeah, so that’s very satisfying and I’d experienced it firsthand, I mean I’d seen it in multiple generations but it was it was nice to have a scholar say that it checked out. 

(Jennifer)

That is true , well i kinda assumed you must have had a background because i dont know anybody that would just choose that type of topic randomly like I’m going to write about politics and science and technology and Alzheimer’s. Yeah that sounds good.

(John)

 I certainly didn’t see it coming. I swear I didn’t see it coming when I started thinking about this story, it just kind of happened. 

(Jennifer)

I like mysteries. This one’s got a little bit of a mystery and what’s  really good is there was one one thing I didn’t see coming, I’m like uh uh uh. 

(John)

You didn’t see it coming.

 (Jennifer)

Now, there was one thing I did see coming but not not the part that I’m  like oh my did not this coming. I should have seen it coming so, I’m going to have to finish it and so I have resolution. 

(John)

That’s right. That’s right. That’s right. We’ll have a little email follow up and see how satisfied you are with that. I think I know what you just found in the book.

(Jennifer)

 I just got to the last section. So I’m about 50 pages, I’m at the point where you like chug a bung of caffeine to try to stay awake and keep reading. 

(John)

 Well I I gotta say I couldn’t ask for a higher compliment than gosh dang it! You got to quit this interview and let me finish your book. I’m so excited.

(Jennifer)

I was like do I email saying I need another hou  to finish the book. Oh well whatever.

(John)

It’s funny. We were talking about before we just a little pre interview and I said I’m comfortable with the idea that this book is not for everyone because I think some people would say, Oh, political science fiction Oh you know maybe that’s my niche right but, Alzheimer’s right I don’t want to read about dementia.

00:40:12 – 00:45:03

Well, you know what you should be reading about dementia and dementia shouldn’t just be treated in novels as something that’s incredibly depressing. And just a weight just crushes everyone. That is part of the experience for some people who have it and are caregivers but it’s part of the experience. There’s also moments of levity, insanity right? Just the madness of it all. And theres a whole  range of emotions and I try to tap into that more in Gray Matters. But I also think somebody who says, hey I want to read some fiction. I’m a caregiver I wanna get a different perspective on dementia, the next words out of their mouth won’t be and I’d love in the context of a political science fiction story. So this book is unusual, but it is distinct. 

(Jennifer)

Well, personally I think it appeals to many people. My husband is not a reader , gonna try to talk him into it but I think in the thirty three years we’ve been together. Our dating anniversary is this weekend, tomorrow actually and I think he’s probably read like three books. He’s not a reader and other than books that are needed for educational purposes. Which makes me nuts because I like to read one or two a month. 

(John)

Well, it doesn’t sound like he’s an audio book person either. But that actually has been recorded and is coming out in just a couple of weeks. Some people have said that they’re more of a listener than a reader. But why do you think it has a broader appeal? What do you think people are gonna find in this that will be satisfying? 

(Jennifer)

There’s a lot of tones of reality but not in a way that is like, in your face. Like we said this starts in like what twenty twenty four it doesn’t have a specific, well i guess it does have a specific year  it was a presidential election year. There’s like a little hint of what’s been happening back here in these whatever times but you don’t dwell on it. It’s not the backbone of the book, the Alzheimer’s is not  it’s not like you’re advocating like this is how we should think about it. It’s a character, the Alzheimer’s actually  one of the characters in the book, and then who doesn’t like a little science fiction technology intrigue. I mean come on people and it’s not complicated like some science fiction books I start reading and its like I need a dictionary. Well I usually read on my ipad so  I have a dictionary attached, but you know. In the before times before iPads and before reading on those I’d be like this is too complicated. I just  just wanna story that I can just kind of get into and immerse myself into and that’s what I got with your book.

(John)

 Well after I had written one of the first drafts a friend said, this is actually a kind of science fiction called near future Scifi and near future Sci Fi tends to be more accessible. It’s usually a kind of a tweak on your reality. Right there are some things that like the you know there might be a self driving car that just feels like maybe ten twenty years ahead but not something flying in the sky that isn’t isn’t actually there or some concept you’re having trouble even grasping right so it’s pretty close at hand. And then as far as the naming things I have a jokey explanation in the book for why every kind of handheld device is called a  Zun right. The failed Microsoft music player, right everyone they’d get tired of having distinguished pads and tablets and phones and smartphones.They’re all just Zunes, right because they all do the same thing they just have different shapes that’s it. So that’s one of the ways I try to keep it accessible is not obsessing right about the finer points details that aren’t really plot relevant and are just kind of showing off some imaginative technology idea. And  if that’s what the books are about well that’s different. But in this case, the technology that’s getting showcased is pretty straightforward. It’s just incrementally moving further and further in terms of how technology could help or seemingly help people with dementia.

(Jennifer)

Well it’s a little scary since you started this book twelve years ago. 

(John)

About ten years ago. Two thousand twelve was when the first craft was done.

(Jennifer)

I knew there was a twelve in there somewhere. So eight, ten years ago. There we go. See told you, no math. And some of that stuff is starting to be a little bit true and I’m sure most people have heard the term science fiction becomes science fact. So I’m really kinda hoping some science fiction doesn’t become fact.

(John)

 Yeah I know I do too and none of the major points in the book changed since the first draft, all that I got was the trump presidency filled in a couple of plot holes.

00:45:04 – 00:50:06

There’s a medical technology that gets adopted and approved by the FDA a little too fast that actually sounds plausible right? That was a concern one the readers pointed out. The FDA  will do whatever it wants now, so I did adapt to the changing reality to address a couple problems but the technology in the book and the way I understand the Internet as this intrusive thing called the loop that was there in the first draft and that feels like that’s happening. The Internet is aggressively asserting itself in our lives in a way that I was anticipating there that I think is only going to get stronger over time.

(Jennifer)

 Oh I can see the loop happening.

(John)

When  Dave Becker’s The Circle came out I was like, oh so close. Thank God I didn’t call it the circle but it the same concept, it’s all connecting everything. We’re all connected and that’s wonderful or maybe not .

(Jennifer)

Maybe right now it might be. But in the after times if might not be. 

(John)

Whenever those come. 

(Jennifer)

Yeah no kidding, twenty twenty-four? You got another book in there hiding in that brain?

(John)

 Sure, actually there’s another novel actually coming out later this year. I mentioned that I studied small groups and this one is actually about small gaming groups. The pandemic has been a real challenge for people who play games face to face especially, people play intense games, things like dungeons and dragons, and so on, and this book will actually feel nostalgic right people used to sit at a table together and play games. And what it’s about is how that actually changes people, that experience of dramatizing these things, these fantasy roleplaying games can  sometimes be a kind of a way of processing trauma and the it’s it’s a literary novel, but with a fantasy element in that you, you keep seeing the world that their characters are playing in the fantasy world in parallel with the real world. And you start to wonder are those things connected  or am I just seeing the game playing or is there something else going on? I won’t say anything but Dungeon Party is the novel that comes out in October Gray Matters  is just coming out this month. This interview is timely. It’s just coming out right now. 

(Jennifer)

Awesome. Well, it’s interesting because my daughter and her fiance are very big gamers. He does play tabletop games in person or did in the before times. They do it over twitch but they also do…

(John)

Oh yea there’s all sorts of things. 

(Jennifer)

Oh yea, I know I can’t keep up with their technologies, I keep up with my own.Theyre digital natives and  I’m not.Im close but I’m I’m thinking my daughter’s got a Bachelor of Fine Arts in Video Game Design. So alot of her conversations are based on characters and fictional things. 

(John)

She will love Dungeon Party and it’s partly a conversation about video games versus playing games together face to face. 

(Jennifer)

I’ll have to get it for her birthday, which is in November.

(John)

 She won’t see that coming.

(Jennifer)

No she won’t,  especially it’s like mom talked to a podcast guest at this is what? It’ll be an interesting conversation. 

(John)

 After writing nonfiction for I don’t know since the early nineties it is fun to have a couple of novels out but they feel timely. Right? One is in some sense about denying medical facts and potentially cataclysmic changes to a society, and the other one is almost nostalgic about being face to face with people and I think that’s something people really want.They want to remember that intimacy.

(Jennifer) 

 I’m kind of longing for my support group to meet in person, my rotary group to be in person, to ride in our cycle club with somebody other than my husband. It’s like okay I talkto the dogs. They don’t talk back and my husband, and it’s getting very old.

(John)

 If the  dogs do start talking to shoot me an email  and we’ll have a conversation. 

(Jennifer)

 In a  Marry Williamson kind of way I channel their thoughts. Well I’m anxious to finish the book. This conversation has revived my poor tired brain like I said before we start recording I told John, this is my fifth zoom meeting in less than twenty four hours and so I’m a little tired of seeing people on screens. So it is nice to actually pick up a real book and read it not on my ipad no screen involved in that one. So it does make it harder to read in the evening though. Actually have to leave the light on in the bedroom while you’re reading. 

(John)

Thank you so much for having me on. It’s been a real pleasure. I’m glad you’re enjoying the story and I hope that some of your viewers or  listeners will also enjoy it and it’ll give them some perspective on how we try to respond to dementia and Alzheimer’s.

00:50:06 – 00:51:12

In constructive ways, maybe finding acceptance. But maybe finding that too challenging it’s I hope I hope folks enjoy it. 

(Jennifer)

I think they will, I highly recommend it. Four stars, five stars on Amazon and I thank you very much for writing it. 

(John)

Most welcome. Best wishes! 

(Jennifer) 

Thank you.

(Outro)

 According to a study at the Fisher Center for Alzheimer’s Research Foundation, mental stimulation like reading can help protect memory and thinking skills especially as we age. The act of reading does a number of things that help heighten overall brain function and increased memory. I think that and Gray Matters are two great reasons to pick up a book and read today. If you’d like some other reading, be sure to check out our fully revamped website. 

There are tons of articles including some that are related to the episodes. And recipes and make sure you’re following me on social media and there’s always I’ll be in your ears again next Tuesday.