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eWomenNetwork member, Julia Sutton, shares her heart-breaking journey about the challenges of being a caregiver to family members who suffer from mental illness, including her brother and her son. It has consumed her, and now she is on a mission to eradicate the stigma around childhood mental illness through a children’s book she wrote and the help of a local hospital.
Watch the video below or listen to the interview on the eWN Podcast Network.
Mental Illness Runs in My Family
PHYLLIS SMITH: Hello and welcome to Spotlight on eWomenNetwork, I’m Phyllis Smith. Today is a pretty serious topic. We’re going to be talking about, taking a deeper look into mental illness. So, listen to these statistics: according to the National Alliance on Mental Illness or NAOMI:
1 in 5 adults in the US, that’s about 44 million people (nearly 20% of the population), experience mental illness in a given year.
1 in 25 adults in the United States, that’s about 10 million people (about 4% of the population), experience a serious mental illness in a given year that substantially interferes with or limits one or more major life activity.
These numbers are staggering and joining me today is a woman who has experience with mental illness first hand. She is an author, an illustrator, and philanthropist. Now she’s featured on this eWomenNetwork “Member Spotlight” series. I’m so honored to have her here. Please welcome Julia Sutton.
JULIA SUTTON: Thank you so much for having me.
PHYLLIS SMITH: And we’re so happy to have you here. So, you’ve just written your first book. This is a dream come true, a 20-year dream come true called, The Other Mermaid. It’s a children’s book. Before we do talk about that - mental illness has been in your family - your brother and then your son. So, can you tell us first about your brother and what his diagnosis was, and how it manifested in your family and your experience growing up?
JULIA SUTTON: Let’s see, this was in the early to mid-70’s and there wasn’t a lot of information about mental illness. So, my brother has been diagnosed with a plethora of different illnesses and I don’t know if they ever got it right. It’s schizophrenia. He has been on medication, mostly he’s self-medicated, and that’s a huge issue with mental illness, because a lot of the medications that are used for the person taking them it feels like it’s taking their soul away. It takes away who they are.
So as a young person growing up it was embarrassing, it was a secret, it was confusing because I would talk to my brother and I couldn’t tell who knows maybe he saw something that the rest of us really didn’t see and it was there. How do you know? My brother and I remain very close to this day. I love him and I support him in his own ventures. What he has done, mostly has lived in outskirts areas. He doesn’t really do well in cities. So, he lives in Alaska. Right now, he’s in Colorado and that’s how he’s dealt with it.
PHYLLIS SMITH: Growing up with a brother, a sibling who had mental illness, what kind of dynamic did that create in your family. I mean with your parents, with you, the stress? What was it like growing up in that kind of environment for you?
JULIA SUTTON: I think it was harder on my parents than for me because they felt guilty and they were angry. A lot of times if there was an explosive event it was like my mom would throw gasoline on the fire, and it went from one bad thing to a huge bad thing. Then the police were called and then he was incarcerated.
As a young person, I was frightened and I stood back in the shadows, sad for my brother, fearing for the rest of us, not knowing what would happen. I remember the first time that we had a family therapy session and there was frosted glass windows with crisscrossing wire and I started tracing - I was so uncomfortable - I started tracing patterns with my eyes and I still do that today if I’m under a lot of stress. It was a very stressful time.
PHYLLIS SMITH: Obviously it is and even when you talk about it you can see that it still brings up some stuff for you.
JULIA SUTTON: Yes.
PHYLLIS SMITH: Very often with a sibling, if the one sibling has mental illness or any kind of illness, the other sibling could get sort of left out in a certain way. Did that impact you in any way as you were growing up - even in terms of your self-esteem and your own abilities to achieve?
JULIA SUTTON: [Sigh] Without going to deeply into our family dynamics, I went the other way. I was an overachiever. I wanted to be the bright shiny button for my parents, so that they would not do to me what they did to him. [laughter]. I was fairly successful in school. I was in theater. I did a lot of stuff that kept me away from the home.
When my son first came to me and he said, “I’m hearing voices.” I said to him, “You’re not!”
PHYLLIS SMITH: Okay, so then, fast forward you have a son and you discover in his teenage years that he suffers from the same mental illness that your brother did, paranoid schizophrenia. How did it manifest itself with him and how did you handle it?
JULIA SUTTON: And actually, they’re two different illnesses, my brother has schizophrenia and Shane, my son, has paranoid schizophrenia. My son’s has a lot more to do with being terrified of being outside, hearing things and seeing things. I don’t about you guys, so many times in my life I’ve felt kind of smug about something, “Oh, I’ve dodged that bullet,” “Oh, I’ll always have good eyesight.” [laughter] “I’ll never get fat.” I thought with my brother’s illness I thought well I dodged that bullet. Never thinking, never dreaming that I would be carrying the gene with me.
My brother has had so much pain in his life, and I didn’t want that for my son. So when my son first came to me and he said, “I’m hearing voices.” I said to him, “You’re not!” I would take that back in a minute if I could but I can’t. It took me about a month before I was willing to do something about it and then it became more and more evident.
There was about 3 years that we were on suicide watch. My son has terrible insomnia, and I would fall asleep at night not knowing if he would be alive when I woke up, because that was a hard time for him and I couldn’t stay awake. So, these were some pretty tough years.
PHYLLIS SMITH: So, you suffered, and obviously he was suffering terribly.
JULIA SUTTON: Yeah.
Healing Mental Illness Without Meds
He had been on medication for about 8 years that gave him heart palpitations!
PHYLLIS SMITH: It also impacted your social life. You had friends who you lost over this.
JULIA SUTTON: Yeah. I want to say that, I don’t want to do this with pointing fingers at people, “Oh, you were so bad because you didn’t." There’s a lot of ignorance out there on what this is and how it is, and so many people are, “Just have him buck up.” He can’t buck up. You don’t go to somebody with cancer and say, “Hey, just get over it!” It’s not seen like that. It’s not a cast on your arm. You can’t look and say, “Oh, I see. oh, let me help you.” It’s, “Oh, you’re a teenage boy. You’re just being lazy.”
And then after hearing that enough I couldn’t be around those people. As a result my world got smaller and smaller and smaller. [sigh] Doctors and intervention and crisis teams and you know, thank God for them because they helped us get through to the next step. Shane is no longer suicidal and hasn’t been for many years which is really, God, thank you, such a blessing!
PHYLLIS SMITH: Obviously there’s all kind of medication for people who have mental illness. For your son it helped, but the doctors took him off, and he hasn’t been on them for about a year. Tell us why, and tell us what he’s accomplishing now?
JULIA SUTTON: Okay. Let me start by saying, medications for mental illness are kind of a crap shoot and they come up with different cocktails that may or may not work for the person, and they may work for a time but then stop being functional. Shane was on 3 different sets of medications. He had been on medication for about 8 years, and this last set gave him heart palpitations - Gave a person who is paranoid panic attacks! He gained an immense amount of weight which really hurt his self-esteem, and he and the psychiatrist said, let’s try something different.
So now, under my son’s doctor’s supervision he has been off all psych drugs for over a year. He’s 22, and about 5 months ago he got his driver’s license, which gives him all kinds of freedom. Because of being off of the medications he has lost 80 lbs. It’s tremendous. The way he sees himself is so different now. He went and took 2 classes at our community college which [quiet crying] 3 years ago he couldn’t leave his room. He couldn’t leave his room! And now he’s going out, and he does the shopping. He’s a wonderful cook. He doesn’t work outside the home, but he cooks our meals. He has a group of friends he goes and plays dungeons and dragons with every week. It’s a miracle! It’s just a miracle!
Stopping the Stigma of Mental Illness
By changing the way society looks at childhood mental illness,
we will change the way these kids see themselves.
we will change the way these kids see themselves.
PHYLLIS SMITH: It’s so interesting because what you’re saying is there’s kind of a nature-nurture kind of thing going on because on the one hand the meds can help, but on the other hand they didn’t for your son. It’s almost like he might be growing out of the experience. It’s possible that mixture, that cocktail of hormones and brain development affects different people different ways.
You are working with somebody at a hospital, and she has a quote that really rings true for you.
JULIA SUTTON: I’m working with Anne Moore, who is an RN and the Director of the Psychiatry and Behavioral Medicine Unit at Seattle Children’s, and this is now my favorite quote. She says, “I believe 100% of the population has mental illness. We just have varying levels of successful coping mechanisms.”
PHYLLIS SMITH: And knowing that, you have a mission, your particular personal mission, and that is your mission statement, “By changing the way society looks at childhood mental illness, we will change the way these kids see themselves.” So, given the fact that mental illness isn’t going away anytime soon, your mission, your goal through your work, through your books, through your illustrations, whatever work you’re going to be doing - you’re hoping that will change the way that society sees people with mental illness?
JULIA SUTTON: I do. [sigh] I think that, along with that nature-nurture is also a societal pressure all kids are under - get good grades, do this, do that, be popular, wear the right clothes and we don’t all fit in a box. Nobody fits in a box. Get rid of the box. Another soapbox. In here though, with kids that are already so stressed from mental illness, whether it’s anxiety, depression, cutting themselves or teenage suicide. Let’s talk folks, there’s an issue here! [sniffing] Sorry, I’m still emotional.
If we get society to stop the stigma, stop it from being a shameful secret, stop being, “Oh, he’s crazy.” Really? If we can get society to stop that and go, “Oh, you have a medical condition. Let’s help.” If we can do that then the kids themselves are going to be able to release some of that shame, some of that guilt, “Oh, my poor mom, look at what she’s going through because of me,” and that will help them heal.
I don’t know why, I kind of agree with you, I think that a lot of the nature-nurture cocktail - if we can get more accepting and give a little extra space here that it can have huge effects. I know that with my brother he’s self-medicated. That puts a whole other imbalance into our bloodstream, another chemical imbalance. God bless you Steve, I love you so much, but I think that just life’s purpose is why all of that happened. Why was I there during that time witnessing what was going on? It helps me be a better advocate for my son, but it also helps me see a bigger picture of how do we help the world.
The Other Mermaid
PHYLLIS SMITH: You just this year have released, have published your first children’s book. It’s called The Other Mermaid. Tell us a brief summary of what the book is about and why you chose that subject?
JULIA SUTTON: The Other Mermaid is a funny fable. It’s a take-off on The Little Mermaid, and in this story a prince goes to the ocean and falls in love with what he thinks is a mermaid but actually it’s a manatee. It just kind goes left field from there. I chose humor because I think the world needs more laughter. Twenty percent of the sales are going to go directly to Seattle Children's Psychiatry and Behavioral Medicine Unit, and because of that we’re working together. In the fall, we’re going to have a fundraiser. In the spring, we’re going to open our own 501(c)3 The Mermaid Guild underneath the hospitals foundation, and we have all kinds of plans on what to do with that.
PHYLLIS SMITH: You gave us a short little summary of it. Why did you actually choose to write the book that way? Is there some deep thing that you wanted to uncover in relation to mental illness?
JULIA SUTTON: No.
JULIA SUTTON: Not at all.
PHYLLIS SMITH: Don’t dive too deep - just enjoy it.
JULIA SUTTON: The book happened because I was in college, a 1000 years ago. I was in college, and I was taking a comparative children’s literature class and an illustration class the same time and they both had unique projects. I saw that you could put them together and just do one project. I really liked that, and so The Other Mermaid was kind of the brain child of that and I did a very bare bones version of it. I always thought I would get back to it.
Because of eWomenNetwork I got back to it this year. As I was doing it I realized that I could use this as a platform. The time is right for this change, and so people were magnetized to this. “Oh, have you done this?” “Have you tried that?” “What about that?” “Can I help with that?” And pretty quickly I saw that this was a lot bigger than my story. It was everybody’s story. It’s your story. Everyone is affected by mental illness and most frequently it presents in childhood. Thus, the need to keep it fun and funny, because these kids their life is already serious. I don’t need to write some book about, “Oh, and he had mental illness and this bad thing happened and that, and now there’s this glimmer of hope at the end.” They already know that their life is serious. I want to take something to them they can laugh at.
eWomenNetwork Conference Changed My Life
PHYLLIS SMITH: Just a year ago at the eWomenNetwork Conference you were selling essential oils. That was your business. You were cool with that, but you were feeling a greater purpose as a result of the conference when our Humanitarian award winner Mama Shu said something. Tell us what she said and how that impacted you to light a fire under your butt and do what made you feel you had a purpose, a bigger purpose.
JULIA SUTTON: First off, if you have never been to an eWomenNetwork Conference get your butt there. It changes everything. Seriously. Find a way! I work at a diner to make ends meet. It was hard to come up with the money and my life has changed forever as a result. Not just my life, but I get to impact other people’s lives. I’m changing the world and you can too. So, I have to say that. Nobody told me to say that. I have say that. I have to tell you that.
Now, what happened was I was feeling quite depressed because of all of the money. [sigh] The last morning the Humanitarian award was given to Mama Shu, and Mama Shu was talking about a terrible tragedy. Her 2-year-old had been killed by a hit-and-run driver, and she said it was the worst pain I could’ve imagined, and I knew I would die. But I woke up the next morning and I thought, “I’m alive. Well, I must be some kind of super woman.” (Watch video above to see Mama' Shu's story)
We all have tragedies in our lives and some are ridiculous, and I have had a few ridiculous tragedies. I’ve gone through counseling. I’ve done this, I’ve done that, but there’s a little part of me that always kind of hung on to it. I heard her say that. I didn’t live through all of that because I was being punished. I lived through it because I am a superwoman. Now it makes sense. Now I understand why, and this is what gives me the power. No, that’s one of the things that gives me the power. You guys give me the power.
One of the best things that has happened with this is that I’m very open, and so I will talk to strangers. “You’re writing book?” “Yes, and I’m donating it for childhood mental illness. Yes, my son has Paranoid Schizophrenia.” And when I say that the first reaction in their eyes is fear, the second reaction is regret, and the third thing that happens is they tell me their story. “My son,” “my aunt,” “my brother,” “my cousin,” “my neighbor,” “my husband.” We are all affected by this. It’s time to stop hiding in isolation when we’re all connected, and we can make it so much easier for each other.
Accountability Success Program
All of that gave a way to stop floating out in the middle of the ocean by myself
PHYLLIS SMITH: So, you found a bigger purpose after you saw Mama Shu say that and then you get an email from eWomenNetwork saying, “Hey, by the way you signed up for this program called, “Conference to Conference Accountability Program.” This is a pilot program and you were an inaugurating participant, 1 of 15, and it was this program that helped you accomplish this goal. How did this help give you clarity as to what your purpose was?
JULIA SUTTON: This is my original book from college (shows The Other Mermaid draft book). You know, tiny little thing, and I kind of grabbed at that like a straw and because of my Success Coach, Syndee Hendricks, because of the other women on our team, because we wanted to have a way to talk to each other. So we built a Facebook page, a private group so we could talk. All of that gave a way to stop floating out in the middle of the ocean by myself.
I accomplished this goal because of this, not with the help - because of it. I would not have even tried to write this book without it. It was a pipe dream way back there. It was a good dream, but I hadn’t drawn for a long time, and boy my first drawings were pretty darn ugly. This gave me not just somebody to cheer me on - it gave me the motivation, because I saw other women were doing it too - other women in a similar situation. None of us were fabulous. We were all just making ends meet, and now all of us, every one of us have achieved our goal and then some.
Done Beats Perfect Every Time
The painful truth is that if you have to make any change, you have to change
PHYLLIS SMITH: What would you say to people who do have that pipe dream, or have a goal, and they just haven’t quite done it. They’re not sure how to do it, and they just have to get unstuck? What would you say to them?
JULIA SUTTON: So, the painful truth is that if you have to make any change, you have to change. That’s the painful truth and I have been a member of narcotics anonymous for almost 23 years now. It’s very similar, nothing changes until you change it. I was a member of Mary Kay which has a great phrase “IDIA, I did it anyway.” That means in NA or AA they say, “No matter what.” Same idea, but I did it anyway, no matter what.
So, life throws stuff at you and we come with our own set of fears and think, “Oh, look at that drawing. Oh my gosh that’s so ugly.” And then I show it to somebody and they're like, “Wow, that’s really cool.” So, we’re our own worst critics, and Sandra Yancey says something, “Done beats perfect every time.” Anybody else out there a perfectionist? You can perfection yourself into never, never land because you just have to take a step. And if it’s not the great dream that you thought it was then you take another step and you revise it and you fix it. You just don’t stop, you just keep going no matter what, and when the tsunami comes and it knocks you off course and you’ve gotta handle all of this stuff over here. That’s okay because you’re still over here and you get back and you keep going.
And it sounds very simple. It is simple. It’s maybe not easy, but it’s simple. I think that part is why the Conference to Conference Program helped me so much. It is simple, it’s not easy but when you have other people there to help you get back on track or to help you remember why are you taking this next step again. I think connect with some people that are trying to do the same thing, not the same project, but improve their life, improve the world around them. Make that kind of change, connect with others that want to do the same thing, and that’s how you make the change.
PHYLLIS SMITH: Beautiful, Julia, I’m so proud of you. You should really, more than anything and I learned this when I was raising my kids, if you say to them as a parent, “Oh, I’m so proud of you,” then they don’t feel they’ve done it. I hope you understand what you’ve done, and that you should be really proud of yourself for taking this leap. And there’s only great things ahead. I somehow am seeing a motivational speaker somewhere in your future. I hope that comes to pass, and I do hope that the steps that you’re taking can get this society to change how they view people with mental illness.
JULIA SUTTON: Yes, yes.
PHYLLIS SMITH: We’re all here cheering you on!
JULIA SUTTON: Thank you so much!
PHYLLIS SMITH: Thank you so much for joining us today!