Your Hosts: Brandon, Mary, Dan, and Howard, with special guest Wendy Tolliver

Wendy skis, and snowboards, and  writes YA novels. She is also the parent of three, one of whom suffers from mental illness. She joined us to talk about how writers can do a better job of depicting it, and how to avoid the pitfalls and the harmful cliches.

Credits: This episode was recorded live at Salt Lake Fan X by Dan Thompson, and mastered by Alex Jackson.

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Transcript

As transcribed by Mike Barker

Key points: All OCD is not the same. Often, the media uses OCD for humor and quirkiness, but the compulsions and disorder can be quite destructive and scary. It’s not just wanting your towels tidy. Often people with mental illness mask it very hard, and it can be difficult for others to realize how bad it is. Punishing the behaviors does not help. Working out strategies to reduce the stress and manage the compulsions can help. Individual education plans can help teachers know how to respond.

( Here comes the rain… )

[Howard] And we’re not that smart.

[Brandon] I’m Brandon.

[Mary] I’m Mary.

[Dan] I’m Dan.

[Howard] I’m Howard.

[Brandon] We are recording live at Salt Lake Comic Con.

[Yelling]

[Dan] We also have a special guest, Wendy Tolliver, with us.

[Mary] Wendy, tell us a little bit about yourself.

[Wendy] Well, hi. First off, I’m really happy to be here. My name’s Wendy Tolliver, as you just said. I live in Eden, Utah, so that let you know right away that yes, I do ski and snowboard. I try to go about 4 times a week. I’m looking forward to this season this year. I’m also a young adult author, and the last 2 books that I’ve written are these beautiful Once-upon-a-time books Regina Rising and Red’s Untold Tale. I also am a mother of 3 crazy boys, ages 17, 14, and 11. My oldest has some mental illness issues that I think we’re going to be talking about today.

[Mary] That’s right. So one of the reasons that we’re starting off by having you tell our listeners a little bit about yourself is to remind everyone that people are not a monolith. So this is going to be about Wendy’s own specific experience, living with a family that has mental illness.

[Wendy] That’s right.

[Mary] You said that your oldest son has some mental illness issues. Can you tell us a little bit about those?

[Wendy] Yes. So my oldest son, he’s 17 right now. When he was in the 4th grade, we were noticing some behaviors that were impacting what we kind of considered a normal little boy’s life. He had nice clothes, but he would choose to wear old clothes that didn’t fit him very well to school. He had a nice backpack, but he would choose to take a grocery sack, one of those recyclable plastic ones for his books to school. We were noticing that his hands were very red and they were dry and they started to get blisters on them.

[Mary] How did that make you feel? Like, what was your emotional reaction before you knew what was going on?

[Wendy] We were really nervous about it, because we were thinking that he would have something that had to do with cleanliness, a mental issue that would have to do with cleanliness. At the very peak of this, I remember, one of his buddies was over, and we were having pizza for dinner. My son stood up in the middle of eating pizza and went upstairs to take a shower. We started kind of counting how many showers our son took, and it went from, “Oh, yay, we have a clean boy. Whoever heard of that?” To him taking up to 7 showers a day.

[Mary] Wow.

[Wendy] So that was definitely impacting his life.

[Dan] And with like scalding hot water, which is what was causing the blisters.

[Wendy] Exactly. I tried to put in the bathrooms as gentle soap as I could find, but still he was walking around and you could see it, like his skin was bright red, and he was even bleeding sometimes from scalding water.

[Mary] So, how long did it take before you were able to get a diagnosis on that?

[Wendy] So… It was approx… We were watching him for probably about a month or 2, if I remember correctly. Then we ended up taking him to a local psychologist who was really good working with children, and he started working with our son.

[Mary] And diagnosed him as having…

[Wendy] OCD tendencies.

[Mary] OCD is shorthand for obsessive compulsive disorder. Now, by random coincidence, the first story I ever sold was a story about OCD.

[Wendy] Oh, wow.

[Mary] One of the things that I didn’t know before I started researching this was that it comes in a bunch of different flavors.

[Brandon] I would say that’s one of the things the media… The media presents OCD in a certain very strong sort of way. I have a friend who’s been diagnosed with OCD. There’s not the handwashing, there’s not… None of the stuff that you associate with the TV OCD does my friend have. But there is severe anxiety if things aren’t lined up in certain ways, that if you know about it… Like, my friend lives a perfectly normal life except for these little triggers that will really make him anxious. It’s a very interesting thing for me to realize… It was one of those things that started me down the path of understanding that all mental illness is a spectrum, and some of it… We don’t… It’s… The illness part is where it impacts our lives and how it changes our lives in ways we don’t want, as opposed to it always being just one person with this really, really crazy disease that sometimes makes good television, but it may not be accurate.

[Mary] This is the reason that we’re doing this series, is because one of the things that I’m going to point out is that you are aware that cleanliness disorders were thing. Probably because of media you had consumed. This is one of the reasons that representation is so important. With that first sale that I made, I took it to my voice teacher, who was in a 45 year marriage. I was so proud because it was my first sale, and I gave it to her. She read it, and then she called me and she said, “Oh, my God. You have described my husband, and we are in divorce proceedings right now.” Neither of them had realized what was wrong with him, because they had never seen his brand of OCD described. They went, he got medication, and the things that were causing problems in the marriage went away. It was because of a single story I wrote in a small press magazine. So this is why it’s so important, and so important to represent it accurately and well. So what are some of the things that you see now that you’re familiar with it that kind of make you want to flip the table when you’re seeing representations of families like yours?

[Wendy] So, one of the things is, and I kind of get it, because the symptoms do look kind of silly, but it’s… OCD specifically is used for humor and quirkiness. So you’ll see a character, they wake up and they have to tap their alarm clock 8 times. Then they have to shuffle over and put their shoes on a certain way and things like that. You’re kind of watching it on a movie or reading about it in a book, and you’re just kind of like, “Oh, that’s a quirky little character.” Or, another thing that’s really prevalent with especially OCD is people will say, “Oh, my gosh, I’m so OSD… Or, yeah, OCD, because I need to have my towels in the closet facing a certain way.” It makes me want to scream, because I’m like, “Don’t you understand that it’s more than just wanting your towels tidy?” It’s a mental thing where these very destructive thoughts are coming into their minds over and over, and they do their compulsions in a way to make themselves feel safer with these horrible, sometimes very scary thoughts that are repeating and repeating and repeating.

[Mary] That’s why a lot of people will have excessive compulsive tendency, but the D, disorder, is because it disrupts your life.

[Howard] My 15-year-old suffers from OCD, and one of the things that… I mean, I used to joke about OCD all the time, because I like to be very organized. I’m an artist, I’ve got pencils everywhere, and I obsess over getting them in the right place. If they’re not in the right place, I am not compelled to cut myself. That is the difference between OCD and oh, I am obsessed about being neat. One of the things that I see writers get wrong all the time is this sense that there is an obsession, but the compulsion is never pictured. The compulsion… In my home, the thought that my daughter might be cutting herself is terrifying. We do everything we can to make sure that the obsession is correctly fed and managed, and it’s so nice to have medications to help that, so that it’s easier.

[Dan] My brother, who has OCD, he uses a metaphor that I think is really great to help you understand what these compulsions are like. He… One of his compulsions is self-harm, similar to Howard’s daughter. He wants to make his head bleed. One night, he was sitting watching TV with his wife, and a commercial came on for ice cream. She said, “Oh, man, that would really hit the spot right now. I really want that ice cream.” He said, “That’s how I feel about making my head bleed. Like, I don’t need it, but it would just really hit the spot. Right now, it would be so delicious if I could just hit my head against the wall and make it bleed.” That’s the kind of compulsions. So, yeah, when people use OCD for humor… Or the one that bothers me is CDO, it’s OCD, but the letters are in the right order. Like, you’re really making fun of a really harmful thing.

[Brandon] Let’s go ahead and stop for our book of the week. The book of the week is Life Inside My Mind.

[Wendy] Yes. So, that’s an anthology that’s coming out this spring. It’s called Life Inside My Mind. It is a… It is the personal accounts from 31 of your favorite young adult authors, and they’re talking about how mental illness has impacted their lives. Most of them are personal stories. I was told that mine’s one of the only ones that not only was talking about someone in the… A family member, rather than myself, but also, I did it from my son’s point of view. It’s an interview that I did over pizza one day. It has some lines in it that, even though I was interviewing him as a writer and trying to keep it very even emotion, I almost broke down and cried. Because, like some… Like Dan was saying, or… When you’re talking about OCD, it’s so like major sometimes that the only way they can think to get out of it is to cut themselves or to commit suicide.

[Dan] Now the… Blah. I’m sorry. Lost my train of thought. We are recording this early. So that by the time this actually airs, that will already be available.

[Wendy] Oh, that’s fantastic. You’ll be able to get it everywhere.

[Dan] Tell us the title again.

[Wendy] Okay. It’s called Life Inside My Mind. It’s edited by Jessica Burkhart, and it’s being published by Simon Pulse.

[Mary] Great. So, one of the things that you just mentioned was that some of the things that your son said made you want to cry. What sort of surprises… Because one of the things about OCD and a lot of other mental illnesses is that people will mask it very hard to try to keep their family and anyone else from knowing what’s going on, because of the stigma of being crazy. What are some of the things that surprised you as… That you learned about your son through this interview?

[Wendy] I… What surprised me the most was I didn’t realize it was as bad as it was. I thought that once he was on his medication and once he didn’t look like his life was being impacted as much, that it was actually being impacted, he just was not sharing what was going on in his mind.

[Mary] Wow.

[Wendy] He was bottling it up. To this day, he takes really long baths. That’s one of the things that helps him. One of the things that helps us is I try to open up that communication with him, and I try to let him tell me everything that’s in his mind, because I feel like that helps him, and it helps me understand him better as well.

[Mary] What are some of the other ways that it has impacted your life? Because, and this is one of the things about being in a family with someone who has… Any kind of illness is that it’s not affecting just them, it’s affecting the community around them.

[Wendy] Right. I think that all in all, our family has been very fortunate, because my son does have a very bubbly, unique, interesting personality, and they just kind of assume that that’s just part of his personality, so that’s actually kind of a good thing. It makes it a little bit easier, so we’re not having to explain to everybody. One of the things that impacted it the most was when he was in the 4th grade, his… One of his teachers would call him out on his behaviors. For example, when his… If his bag of books would touch the ground, he would be really scared about that and he’d pick it up really fast, and he’d be watching out the hall to make sure it didn’t go on the ground. She moved his seat away from the hall, because she didn’t want him looking up into the hall. Another thing that she did was he would click his pen, like this, [click] when he got done with a test and just waiting. I think that was to help the thoughts from not going in his mind or whatever. He would do this. She punished him for it.

[Dan] So, I have a question for you. When you were introducing yourself at the beginning, you said you had 3 crazy boys. Which, to someone outside of the situation, would be like, “How could you possibly call your son crazy?” But, from living inside of that, and living with it, there’s often a perception that’s very different, and it’s treated sometimes irreverently or jokingly because you kind of have to in order to deal with it. So, what are some of the coping strategies your family uses that people might be surprised by?

[Wendy] Well, one of the things is whenever… This is a strategy that his fifth-grade teacher actually taught us, which is whenever he starts feeling anx… Here’s some more things that go along with OCD, depression, anxiety, and the panic attacks. Whenever he was feeling like that during school, his fifth-grade teacher gave him a free pass out into the hall and he could sit out and achieve a… And just be alone. That was really helpful. So we know that when things are getting stressful for him, or when he kind of has like a more rigid body positioning, he can kind of feel it coming on, and we don’t ask questions when he leaves the room.

[Howard] This… The… You’ve… You talk about the teacher. I can’t stress enough how critical it is that we be able to talk to people outside our families about this. My own kids… It’s more than just my daughter who suffers from things, and they’re not all the same thing, which is really exciting in my house.

[Laughter]

[Howard] I am not immune to these things, I have my own issues. But they have what they call individual education plans, IEPs, here in Utah, and my kids who have them, in all of these cases, their teachers know, “Oh, if there’s an episode, if there’s an issue, if there’s a thing, we have a release valve.” Maybe it is you go to the resource center, and maybe it is you sit with the nurse. I don’t know what all the strategies are. I love that I don’t need to. I love that we have talked about it enough that somebody else is in place to help my children when I can’t.

[Mary] So, I think that we could talk about this for days.

[Chuckles]

[Mary] Because obviously there’s a lot of stuff in here. So I think we’re going to wrap up and go to homework. The homework that I’m going to give is to ask you, our listeners, to pick a mental disorder that you think you know something about from media. Then go and read some case studies. There’s usually a… Some really good narrative case studies written about various disorders. I want you to read a couple of those. Then I want you to write a scene in which you use the symptoms to affect the way the character interacts with the world around them without ever naming them as a symptom or naming the disease. See if you can convey what’s going on with that character. Just make it part of their normal.

[Brandon] Thank you very much, Wendy, for being on the podcast. Thank you, Comic Con audience.

[Whoo! Applause]

[Brandon] This has been Writing Excuses, you’re out of excuses, now go write.