Transcript: Episode 25
Guest: Jeff Clark and the Patchwork Quilt
[Short piano piece is played, lasting about 20 seconds]
Hello. Today we’re talking with Jeff Clark, the author of the children’s book ‘The Patchwork Quilt.’ Beautifully illustrated, this book explains the story of a quilt that gets torn up into pieces and each of the pieces of the quilt have a new role to play, but ultimately learn to work together and become a patchwork quilt. It’s a beautiful metaphor that explains Dissociative Identity Disorder to outside kids and internal littles. Though I plan to interview Jeff, what I did not plan on was the beautiful love story that he would share regarding his relationship with his wife and their journey through their own discovery and understanding of his wife's diagnosis of Dissociative Identity Disorder. I did also speak to his wife. While I don’t air that on the podcast, I did have her permission to share his version of her story. It’s pretty special.
Interviewer in bold font
Interviewee in standard font
Welcome Jeff Clark.
Definitely. This is really a story about me and my wife and my family. You know, it’s definitely a collective story. My wife and I have been together for about 23 years, we’ve been married. And we dated for about six years before that so we were high school sweethearts.
That’s so sweet.
It is. It was very much one of those fairy tale kind of romances where [chuckles] she actually was dating one of my friends. Yes. And I really, really liked her, but I had always said, no, no, no, she’s with you and well, when they broke up, we started going out shortly thereafter.
Wow. What a story.
Yeah, she had actually been sick for quite some time and the school district in the area was homeschooling her. I guess that you’d call it homeschooling. They had a teacher that they would send out to kids that were homebound and then the teacher would go around to them. And I had met her and just found her absolutely, fabulously interesting and I also thought wow, this has got to be so boring, so sad, so lonely not to have the interactions and be out with everyone else at school. So, I actually started…
You checked on her, didn’t you?
Yes, I did. So, I started going over to her house every day after school and bringing a Scrabble board and we would sit and play Scrabble.
Oh my goodness!
So, that was, I guess you would say our courting for a while. And then her health improved where she started being able to come in for some classes. When we actually started to, I’m doing air quotes here. I know everyone can’t see that. When we actually started to date, date….
[Laughs]
Was the first time that I ever skipped school. She had told me that she needed to talk with me about something and we went out and we talked and she told me that she had been sexually abused.
Oh no.
Yeah, and so my first reaction was...have you talked with your parents? Have you talked with authorities? What are you doing? And you know, she really hid that she knew something had happened with her biological father but she didn’t know what had happened.
She was already dissociating.
Yes, yes. You know, I didn’t have those words and at that time, I always took it...in my mind was more of ...oh, this is something she doesn’t want to talk about. This is something has happened and it’s just too much for her and she’s dealing with it in her own ways.
So you understood it like she didn’t want to talk about it because it was too hard. Not yet realizing she literally couldn’t talk about it because of the dissociation.
Correct. Correct. And it was interesting because as we were getting to know each other and talking and when you’re starting those relationships especially early, there’s a lot of time spent hours and hours out on her front porch talking. I was always surprised as we would talk about things, I would bring up things from pop culture or things from the past, things that people our age really should have and know as touchstone things.
Right. Right.
And there were so many things that would come up that she would say, “No, I don’t remember that. No.” And she would say, “I don’t remember my childhood.” And again, I always took that to mean, “Oh, I don’t want to talk about my childhood.” So, she started to go to group therapy and I was taking her and I was actually taking her mom too. Because she was going to a group also, because there’s all kinds of issues that the rest of the family had to deal with. So I was their chauffeur for a good two years.
Wow.
And after about 12 months in, 24 months in, she started saying, “I’m not really sure if this is helping.” And then finally she said, “You know, this isn’t doing anything for me anymore. It’s stirring up more negative within me than it is helping. I don’t think I need to do this anymore.”
Wow, and that’s so common with people with dissociative disorders or trauma anyway. Especially when they’re not yet being treated for the trauma, because…
Right.
There’s so many of us that have been through so many therapists or so many different programs trying to find the right help until someone knew what was going on.
Right. Right. So, at that point she stopped going into therapy and we were really kind of moving into another stage of our lives as we were going off to college. She excelled in college. She had a 4.0 and she was actually the valedictorian and seemed to be doing very, very well. We went to college at the same place and after four years, I had always told her parents and my parents, we wouldn’t get married until I had good health insurance and a job that could support us. So, once we got to that position, we got married. We moved off. Life was very Normal Rockwell I would say.
You guys went through so much before you even got married.
You know, the interesting thing is there was a lot that I hadn’t brought up yet, because we did go through a lot. My wife was dealing with a lot of physical problems, which I kind of touched on earlier that she was being homeschooled or whatever they called it through the school district.
The homebound.
Yes, the homebound. Thank you. That she was having lots and lots of very serious health problems, and looking back now on those things I had seen them in a very different light than I do now. But she had debilitating headaches all of the time and had gone to specialist after specialist. They initially had diagnosed her with...they said she had chronic fatigue syndrome. Then they said she had systemic lupus. And then as we went further down the line, this continued on after we had graduated from college, after we had gotten married, she was still having these terrible headaches. So, we started seeing neurosurgeons and for quite some time, and by quite some time I mean two years, almost every Friday we were going to the ER and she was having a spinal tap to release fluid and pressure in her head. That’s how bad they were and coming from someone who... I had a terrible fear of needles, being to the point where doctors actually had me assisting with the spinal taps holding things at one point.
So, as she was going through all of these physical symptoms...that she had pseudotumor cerebri. You know, what essentially looks like a tumor in your brain, but it’s not. The long story short of it, they started putting in all these different shunts to control the pressure in her head. Quite literally she had over a hundred different surgeries for revisions, replacing and changing these shunts out, over a three, four year period.
That’s wild. I have a son with a shunt and we’ve only had to replace it twice, and he’s 10.
Wow. There was a point where almost an infamous, you know my wife and I laugh about it now, but we had been at a Blockbuster Video just to date this story on a Friday, had gotten Chinese food and I look down and her shirt was wet where the shunt had ruptured and was actually leaking out through an incision. When three weeks later, after she had another revision, literally the exact same thing occurred as we had gone and gotten Chinese food, had gone to Blockbuster Video, I looked down at her shirt and she looked at me and it was one of those moments of I don’t know, I would say euphoria as a feeling, but that’s a positive thing, this was like a joining of our minds and this is a terrible, terrible thing, but all we can do is stand here and cry and laugh in Blockbuster Video, because it’s happened again.
Right. Wow.
So, you know, she was going through all of these things and looking at it now, I can’t blame the doctors in any way, shape, or form. You know, they have specific trainings and I don’t know if it’s a kind of hubris, but people look at things and everybody wants to be able to fix things and tends to see things within whatever lane they drive in.
Right.
So, you have a broken garbage disposal. You call the electrician and he’s going to want to replace the motor on the garbage disposal. You call the plumber, and he starts working on unclogging the pipes and that’s what I really feel was happening with us. We were seeing these different specialists. Everyone was coming up with a diagnosis telling us how they could fix it and we were going through all the ropes of having them fix it, but none of them really were seeing the real problem. And we weren’t going to see the problem for another 14, 15 years. And I only, looking back on it now, can only kind of understand it.
So, we were going through all of these things with her physically, to the point where they actually did what they call a cerebral decompression where they…
Yeah.
They removed pieces of her skull at one point. They did the cerebral decompression, I mean, some pretty heavy duty surgeries.
That’s serious.
Yeah. So all of this was going on over a course of about seven years and we finally had reached, despite all of that I would say from our side, from our point of view, we had a very great life.
That makes sense too - why you would want to make sure you had health insurance before you got married.
Yes. Exactly. Things moved on and after the cerebral decompression, my wife started feeling better. She would still have these headaches, but they weren’t as intense as they had been before. We kind of moved into a new stage of our lives where we had our first daughter, and we had our second and then we had our son. My wife was an elementary school teacher and when our kids came along decided that she wanted to homeschool.
Ohhh. We did that too. It’s very intense.
Yes. Very intense, but she put herself into that just as much as she had with her studies and with everything else and she did that for almost 13 years. Putting her all into it and I would always say she was holding herself to higher standards than anyone else ever would. And looking back on it, I see a lot of other reasons why. I can see that part of this was a cacooning for protection for herself and for the kids also.
Right. Right.
So then about three years ago, one of my wife’s abusers passed away and at the same time, my oldest daughter was reaching puberty and I know my wife was putting a lot of additional pressures on herself with the homeschooling. And you know for a lack of a better word she had a breakdown or maybe a break through.
I love that. I really, really love how you said that. And as I shared with you before, that’s very similar to what happened with us. We were homeschooling and that was such an intense experience. It was in part to protect our children and in part to protect ourselves and our parents died and all these other things where we finally just fell apart. I mean it’s ultimately what got us help, but in a very parallel way that’s exactly what happened to us.
It’s interesting, you know, I don’t know a lot of people with DIDs, but from my chats with people on the boards and things like that, it’s amazing to me looking back, how many parallels I find in our story and in others. From the physical problems that she had to the hyper focus excelling .
Right. Right.
It’s very interesting to….you know, I see things clearer now than I did as I was living through them.
Right. You know so much now about what was going on then that you didn’t know at that time.
Right. Exactly. So, as this happened I very quickly realized that there was more going on and almost instantly, I knew that this was relating back to her childhood and the abuse from her childhood.
From the breakdown? The hospital? Where did you figure that out?
I actually connected that when she had the breakdown. Because quite frankly, the reaction that she had, she barricaded herself into a corner and was pulling furniture and things over top of herself and it was one of those instances of, okay, she’s trying to protect herself from something and it’s not something that she’s dealing with in the now.
In that moment you could just see.
Yes, and actually my first reaction surprisingly wasn’t to call an ambulance or to call a doctor, I had called her sister who had gone through the childhood also. I said, you know, this is what I think was happening, and she’s actually in the medical field. She drove out to our house and she was like we need to get her in...she’s not in a safe place right now mentally.
Right.
Now, what I didn’t know because one of the, I would almost say, one of the defining parts of DIDs ss secrecy. Now be that internal secrecy or ends up becoming an external secrecy now because of the stigma because of the things we are trying to change. But, her sister actually has DIDs and had been diagnosed with DIDs some time ago.
Oh wow.
I never knew that which surprised me because we are a very close family.
So, at this point in the story when she’s coming over to check on your wife, she had already been diagnosed herself?
Yes, she had.
Oh my goodness.
Yes, she had. And quite frankly, it’s one of those things too where looking back on it, there was things that she did and behaved that now I see very differently than I would have then. You know? It’s been quite an eye opener. So, we took my wife in and as I’m sure many of your listeners have dealt with, the mental health facilities can be some pretty bad places at times.
They’re so brutal and we need them in emergencies, but trauma specific or they don’t know what they’re seeing then they don’t get it and it’s really, really causing problems.
Yes. You know the E.R definitely was the place and I understand that they didn’t have the tools to see this or to know what they were dealing with. To be quite honest, my wife didn’t know and she had been dealing with it for years upon years upon years, but the just general mental health….what guidance wasn’t there. So, she ended up in a place that was not really good for her. It was not a setting that would make her feel safe in any form or fashion. It was mainly a place that worked with people with addiction issues so there was a lot of yelling and a lot of angry people and a lot of doctors who seemed like they were at the end of their ropes [chuckles] with yelling and angry people.
How terrifying.
It was. It was a terrifying place for her. Honestly, it was a terrifying place for me, because it was not where I would want my wife to be. I had a terrible time getting any information or any guidance from these doctors and quite frankly, some of them said things and came across very, very rough. One of her doctors described her condition as deja vu. Which I was like...that is not a medical condition. What are you talking about?
And he said, “Well, you know, she’s very dramatic here.”
“What do you mean?”
“Well, I can see that there’s some dissociation going on with her, but there’s a lot of drama in her.”
Which to me either equates to...how I read that was I don’t believe what’s going on with your wife. She’s just making a big scene.
Right. Right.
That was what the...I don’t know if that is what he meant, but in the brief five minutes, and literally that was about the amount of time that I got with him, was five minutes and the one nugget that he threw out there was I know that there’s dissociation going on.
Right, right. Even though the rest of it was so infuriating and disrespectful, at least you had that word, like a piece to the puzzle.
Exactly. Exactly. And….
And he didn’t explain that at all or elaborate at all?
No. No, he didn’t. No, he didn’t. You know and I was able to talk to some of the people that were working there on the floor and they were telling me hey, we’re watching over here. And it’s like what’s going on. And they were like she's okay and she’s sitting a lot by herself and she will only sleep with her bed on the floor against the wall and just a lot of... they were giving me little tidbits of information. I very quickly at that point was like, I’ve got to find a way to get her out of here and get her to some place that is more apt, more able to help her along. I did work with some other providers in the area, and as I mentioned, my sister in law is in the medical field, so she helped steer me in the right direction and I was able to get her transferred to some place that was much, much better suited.
That’s amazing. That’s really hard to do.
It was. And it was one of those periods where they kept saying, “Well, if she makes it through these next two days then we’ll send her home.” And I was like, “Wait...I don’t think home is the right place for her right now, as much as that pains me to say.”
Right.
You know home isn’t where she needs to be, but I sure as heck know she’s not supposed to be here.
Good for you.
And I finally went in with the paperwork saying, listen she is coming out, she is under my supervision, I’m taking her elsewhere because she cannot stay in this place any longer.
Good for you.
And I’ve got it set up that she’s going some place else.
You’re everyone's hero right now.
[Laughs]
Busting her out of there.
It was a hard situation and this was just making it worse. So, we were able to get her moved to someplace else and they worked with her and she was stabilized and I had some doctors there who were very helpful. And at that point no one was saying DIDs, but they were asking, well does she come from an abusive background? Like what do you know? They were giving me little bread crumbs along the way about what was happening.
Oh, interesting.
And it wasn’t until about she got out and was released and was able to come home and that was a whole other level of trauma because she didn’t feel ready to. But very quickly, when she came home, the very first night, I remember her walking out of our bedroom and just staring at our front door. Just staring at our front door and then walking back to me and she just broke down crying. And I said, “Sweety, what’s wrong?” And she said, “ don’t remember putting this shirt on. I don’t remember putting this shirt on.” I was like, “Okay.” She was like, “I went in to put on some clothes and I’ve got to take this off.” And it was a strange reaction to me because I mean, it was just a comfty t-shirt and jammies but it was so foreign to her at that point.
She was really distressed.
Yes, and I remember her going in and changing into something else and at that point we started looking for some longer term therapy. She was going into a day hospital, a partial day to kind of help work with things. There were few instances there where you know, they called me one day because she was under a table and wouldn’t come out and another time where she was hiding in the bathroom and it was strange because 80% of the time she was just the normal woman I always knew. And then it was like a switch had been turned.
[Laughs]
Yes, and suddenly, she didn’t know what was going on. I mean, she was very concerned that she was just crazy and that’s what she said over and over again. I don’t want to go home. I think I’m crazy. I don’t know what’s happening - very, very just torn apart and confused. And that little kernel that had been dropped earlier with the word ‘dissociation’ and the things that some of the doctors had mentioned along the way and what was happening with her under a table or wandering around the house. And I didn’t mention that before, but that was something she had also always been prone to - sleepwalking and that had happened for years upon years. I would always tell her, “You’re doing strange things at night.” And she’d be like “What do you mean, strange things at night?” And I’d say, “Sweetie, I would look over and your arms were up and it looked like you were writing or it looked like you were drawing in the air.” And she always just thought I was making it up. So, there was a lot of history that I had to draw upon. That when I heard that word dissociation and I started looking into it, I thought, Huh, there’s something more here. These pieces are falling into line with this Dissociative Identity Disorder.
And then, while she was in the hospital I came across a stack of papers under her journal that wasn’t her writing, but it was there in her journal. And then I found a couple different names in that and then strangely enough, while she was in the day hospital, one of the things they have them do there is journal and do these workbooks, and flipping through that one day, lo and behold, I found the same writing and the same name. And it was like BINGO, this is what’s going on. This is what’s going on. So, at that point,I was able to start having a more intelligent discussion with the doctors and the therapist and say, “Hey, have you guys looked at this? Is this what’s going on?” And they were pretty much in agreement at that point. They started saying this fits with what you’re dealing with. Now...me figuring it out and then her figuring it out is like two separate worlds apart, you know?
[Laughs] Right. Right. You had a diagnosis at least or she did and you knew about it at that point.
Right. Right. And me knowing about it and the doctors saying it didn’t mean she believed it in any form or fashion.
Right. That seems to be pretty consistent too, that it’s really difficult for some of us to accept that that’s what’s going on.
Yeah, well you know, and full honesty, even as I was learning it, I was like okay this isn’t real. This can’t be right, you know? Because it was such a foreign concept and then as you start looking at it and researching it and go, wow, even though I had the facts and the pieces and things lined up for me, it was still something that took...I wouldn’t say a leap of faith, but it definitely took some time for me to fully absorb and to realize and understand and say, yes. There was a lot of things along the way. People that I talked with that were counselors and things who had worked with people with DIDs and most of them...a couple of them had worked with a few people with DIDs and then one who I met online who specialized in working with DIDs and he kept giving me things - little bits of information. And then I would see those things happening. It was strange because he would say something to me and it was almost precognitive. It wasn’t, but within two or three days it would be like, oh, wait a minute, that’s just like what he was talking about. I can fully see this now.
Like putting on glasses and it was there all the time.
Yes. Very much so. So as that picture became clearer for me, then it was really the process of okay, how can I make this clear for her and how can we figure out how to normalize this for everybody in her? Because I don’t want anyone to wake up and be confused and not know where they are and wandering around the house. I don’t want someone to be scared because they don’t know what shirt they're wearing.
That’s really huge. That’s a hard, hard place in the very early days of getting diagnosed and trying to sort of spread the word, so to speak, about what’s going on and orienting everybody and getting everyone on the same page and rescuing some of those that are more internal or less present in the now time, like in the present day. It’s a real challenge doing what you’re talking about - to make them feel safe and oriented and know where they are and what’s going on.
Yes. I thought the challenges with my wife were difficult and then I met my first part, which I don’t necessarily know if that’s the word that everybody likes - a head mate or family member.
Right. Another insider.
Insider. Well, insider who became an outsider.
Right! Exactly. [chuckles] There’s so much language and everyone has different preferences.
Yes, and that’s a challenge because some people get very entrenched in which words they want to use.
You’ll see on the online groups on the forums, you’ll see someone will say, “I found out I have DID and that I’ve got these parts,” and they’re like, “...and you’re also a part sweety.” [laughs]
Right. Right. Right. So, that was the language, actually I think is one of those challenging things that we as a DIDs community I guess you would say, need to be very kind and very soft with each other, because it’s such a journey. And people are at different spots along the journey and how they are working together.
Yes. There’s room for compassion there. There’s room for compassion.
Yes. Yes, and funny that you say compassion, because that was one of the first challenges or I would actually say breakthroughs that I had. So I met the first person that came out and she was very young and we have...there’s horses that our neighbors have, and I had been driving with my wife. She was just staring off at these horses and listening to the music on the radio very loud and we talked a little bit and I realized, okay this is somebody else now. It was a very good experience. And later on I learned that she was kind of sent out to be the guinea pig, if you will. Because she’s someone who normally doesn’t talk, and others were putting her out to see if it was a safe time to be out. And then...
Testing the waters .
Yeah. Testing the waters. Testing the waters. And then very shortly thereafter I met someone who again using the words of DIDs, would be a protector or I guess you could also say the gatekeeper. She was the one who said that she knew the way in and out and could let people in and out.
Oh, wow.
And initially was a very hard person to work with. I mean...was very much stuck in the past and I think that...and that’s understandable. In the language of DIDs, you would say my wife had pretty much fronted or driven for almost 30 years. There were instances where others had probably popped in and out.
Interesting.
But, she was driving the bus. She had been driving the bus for a long time and there were a lot of others who were very much living in the past - in past trauma.
Yes.
Yes, and coming out of those experiences. You know, one of the things I always say when people are talking about head mates or alters or whatever you want to say, and talking about...I’m always seeing posts for a lot of the supporters or people who are having a hard time dealing with this particular element, this particular person.
Right.
And I always pull it back to the analogy of a soldier at war. When a soldier comes back, oftentimes they have seen terrible things. They’ve been involved with terrible things, and there’s that PTSD. There’s that shell shock.
Right.
And they have been shaped by those experiences, and I know that and I understand that. I 150%, with all of my being, can appreciate everything that that soldier has done and be grateful for what they have done and I will give them the love and the honor for the battles that they have fought.
Right.
And I will give them compassion and space to try to normalize now that they're not in those battles.
You made me cry.
[Laughs]
That’s really powerful. I appreciate you sharing that.
I think it’s powerful, because I think it’s true and I think it’s something that is an easy way for everyone to understand. By the same time, I also say, and with that you still need to hold that soldier, you still need to hold that person, you still need to hold that part responsible for their actions. This is not about absolving someone from responsibility for what they do, but this is about giving people space and compassion to live and to heal.
When initially this one part came out and was just not cooperating, I wouldn’t even say cooperating, but just wasn’t being very nice, you know?
Right. Sure.
I had the discussion of why did you do what you did? The reply was well, she, my wife, was little and I couldn’t let that happen. And I said okay, you have just gone on and on and on about how terrible this world is and how that gives you the right to be terrible to everyone else, but you have just shown me an example of pure love, and that is the kind of person, that is the kind of person...I’m going to cry now...that is the kind of person that I want to be. That is the example….
My mind is so blown right now.
[Laughs] That is the kind of person that I want to be and that is how I try to live my life. So, when you’re saying that the world is this dark and evil and terrible place, I understand it, because I know that that’s what you’ve come through. But, you have already shown me by your example that that is not the way this world is, because that is not what you were operating out of.
Oh my goodness. You just completely turned the world upside down. Like I don’t even know how to [chuckles] process what you just said. I have no intelligent response, because so many things are happening in my head right now.
That realization...that discussion was turning point for me and for my wife and for her understanding of DIDs and for how we were going to live and be with this, because there’s so much confusion within a person with DIDs. There is that denial within oneself, this I really don’t have...this can’t be happening...these voices are just me being crazy. There is the guilt that comes from a mom who has been homeschooling who suddenly can’t. There’s so much going on and we had to reground ourselves of okay, this is who we are, this is what we’re going through, let’s understand it, let’s treat ourselves...you treat everyone in there the way that you have lived and want to treat others and this will help us manage through this. This will help us understand and it is not always an easy process. There’s always been challenges along the way because...I like to talk about the reality of now and I know this isn’t the reality that everyone has, but I always talk about, you know what, the reality of now is that you are safe, everybody is safe, you are loved, everybody is loved, you are secure, you are secure. That’s not because of me, but that is because of where you are in time and space. That is where all of you have gotten yourself to. It’s been a team play this whole time. This has all been a group effort to get to where you are, and let’s acknowledge the spot where we’re at and let’s also see how we can continue to work together to grow, to live, to be happy. Let’s acknowledge, yes, terrible things happened in the past and let’s make sure that no one's living in the past though. Let’s make sure that no one…
Okay, so… you have again just blown my mind. That’s so empowering and it’s so powerful. The listeners of the podcast know that one of the things that our therapist has taught us is that now time is safe, and I could add to that, that one thing our husband says a lot to everybody is you are safe, you are loved, now time is safe. Like trying to practice that and so it’s been this mantra for almost a year on this podcast - now time is safe, now time is safe. As if now we say it enough times we’ll believe it. But, you just took that and put it into perspective as a gift we had already given ourselves. This was the whole point, like we’ve made it.
Yes. Yes, exactly.
Well, I’m pretty sure I’m healed. I don’t know about you guys, but I’m all better.
[Laughs] It’s funny because on a very practical level one of the things that I did when my wife came back from the hospital, is my children and I covered the wall of our bedroom - floor to ceiling in pictures, framed pictures, because I thought what a great way to actually have and acknowledge not just where we are, but also where we’ve been. So that no matter who is waking up, because very often it’s somebody else, they can turn to look and see we have positive pictures from their childhood, we have pictures of our journey along the way…
This is crazy, because we did that too! That’s another parallel we have. Our bedroom wall we covered in photographs and put even like these are the names of the kids and these are the….
Yes. Yes.
Oh my goodness.
That’s funny you say that, because there’s Post-it notes on pictures with arrows.
Yes! Yes! I feel so less crazy now. I’m so glad that I talked to you. [chuckles]
You know what? It was funny, just on a funny kind of practical note, there was a phase, there was a time where, and I’ve heard this from many people, where mirrors were a terrible, terrible issue for my wife.
Right.
I a thousand percent can understand that. Suddenly looking in the mirror and going, “Wait a minute. That’s not me. Who is that?” And having someone who hasn’t driven, I use the term driven instead of front very often, someone who hasn’t driven in a long time suddenly looking at it and going, “Wait a minute. That looks like an adult. That looks scary.” You know? So there was a real challenge with mirrors.
Right.
So, after finding my wife a number of times glass, hiding in front of it or recoiled in fear because of it, I was like, why don’t we just get rid of the mirrors for a while?
That’s amazing.
She looked at me and she was like, “You would do that?” And I was like, “Sure. If that’s what it takes to help, sure.” So, we took down the mirrors for a while.
That’s amazing.
And you know, it was one of those things, here, let’s start... here’s a compact and it has a mirror. It’s sitting folded up over here and if somebody needs it, and also it’s a great way to re-acclimate, you know there got to a point where she was like I want to get used to mirrors. Which, I know people outside of the community would be listening to this and thinking, what’s he talking about, but it’s something that needs to happen. So, she would look at the little mirror, and it was something small that she could control. So, there’s a lot of little practical things.
That’s brilliant. That’s an exposure kind of therapy.
Yes. Yes.
That’s amazing.
So, anyway, it got to a point where my wife was feeling much more comfortable and we had had that discussion and that breakthrough. And honestly, that made it much easier. Now there was challenges along the way, but one of the things that I knew was just really tearing at my wife was, how do I talk about this with the kids? What’s the discussion there? Because this has been a nuclear bomb in their lives.
You mean your outside kids?
Correct.
Okay, just clarifying.
Correct. I’m glad you did. I’m glad you did. What can we do with this? What kind of discussion can we have? And I am very much open and honest kind of person. I think that especially with DIDs, I think that’s really important, because again, there’s so much of this is about hiding - hiding of memories, hiding of the past, and then even now there’s still so much of a hiding because of what’s portrayed out in the culture. You know, I didn’t want to keep this from the kids, but at the same time I know that this is hard for adults to understand. This is hard for medical personnel to understand, and there has been so much negativity over the years in dealing with this and talking about Multiple Personality Disorder or DIDs. I knew I wanted to be able to talk with my kids. So, I started looking around trying to find some resources.
Yeah.
And I found a few books that were a little bit older, written late 80s-ish. I bought them off of Amazon and quite frankly, I found them a little scary. Now, that’s not to say they weren’t dealing with truth, because it’s scary and confusing. Lord knows it’s scary and confusing for someone with DIDs and it can be just as much for all of us on the outside, that’s understandable.
Right.
The resources that I was finding were really reflecting too much that scary side, and I was like, this is not how I want to be able to talk about it. Every book I picked up had some scary black and white picture of someone staring into a mirror with someone else staring back, and while I had gone through that and acknowledged that that is a reality, that wasn’t the reality and how I wanted to talk about it with a kid.
Right.
Because I didn’t want to feed into the culture of fear.
Looking for something that is accurate, but also focused on the healing and what you said earlier about normalizing, like this is where we’re at and what we’re going to deal with, not just the fear and the terror of the past. That’s the whole point of getting better, right?
Yeah, exactly.
Even as a family!
Exactly. This is all about survival which is positive. This is about healing and a way forward and I wanted to be able to talk about that with my kids. So, I looked around and I couldn’t find any great resources. You know what, I will say Jade Miller’s...I don’t know if you’ve looked at any of those… were some that I found which are very good to talk to insiders, but I was really looking for something to talk to outsiders.
Right. Right.
So, I started thinking about, how do I want to have this conversation with my kids? And because obviously, they know mommy has been in the hospital. You know, she had two or three different stints at the hospital. They know that things have changed. We need to be able to talk about this, and I had another kind of ah-ha moment or a kind of awakening moment, when the first time I sat down and talked with my oldest daughter. And I was talking to her and she said, “Oh, wait a minute, Multiple Personality Disorder, I remember seeing this. This is like that thing that I saw on Maury Povitch.”
Oh my goodness.
And I had to kind of grit teeth.. Now I have not gone back to see what was on or what was perceived. But, I know from seeing the Maury Povich Show before that it would not be the kind of serious discussion or coming from the kind of place that I wanted to have the discussion coming from.
Right.
So I thought I need to do something.
You need a different metaphor.
Yes. I need a different form. I need a different kind of narrative. So, I thought you know what, I’m going to write a kids book.
Good for you!
[Laughs] So, my youngest just turned six and my oldest turns 15 tomorrow, which I cannot believe.
Oh my goodness.
Yes. She’s going to be able to start driver’s training soon and it just blows my mind. It just blows my mind.
The story or the genesis of the Patchwork Quilt also ties back into my wife and her story and her healing. Because I mean really, this is all really her story, and I mean that both in a figurative and in very many ways, a literal sense, because the story actually...this sounds strange...but, the story actually happened. One of the traumas that my wife went through when she was younger and it was strange, because as we were teenagers, I remembered hearing about this in passing - that when my wife was younger, one of her abusers took her blanket, her safety blanket, as many kids would have. I mean, my kids have. Most kids either have a safety blanket or a special animal or something.
Right.
But, the abuser took that blanket and cut it up.
Wow.
It was strange, because I had heard that when we were younger and when we had first started dating, someone had mentioned that almost kind of as in passing. You know, “Yeah, he did that. He was a jerk.” And that was kind of how it was presented out. Well, someone on the inside and actually a lot of people on the inside, that was an amazingly traumatic experience and came out to me looking for their blanket and upset because the blanket had been cut up. What I didn’t know at that point was that it was deeply tied to trauma because they had cut the blanket up and relayed back to my wife or an insider back then, that that was what they could do to anyone.
Right.
Anyone who talked... anyone who told. So, it was this compounding of this trauma around what should be a great and a beautiful piece of childhood. Like I said, my kids have their security blankets and their wubbies and their stuffed animals and things like that. And it just so happens that I still have my blanket form when I was a child, and it was in a hope chest. So, the next time that that part came out, I gave them my blanket - the quilt that I had as a child. And it was another one of those healing moments where it just took something that had been so traumatic and was making it right again. And I thought, you know what, this story as a whole could be a great way for me to be able to talk to my kids. So, I sat down and I started writing this story and I did my first rough draft version where I grabbed clip art and some ideas from online and I typed up the text, and I gave that version to my wife. And she sat and she read it and she cried and she cried and she cried and she said, “This is beautiful. I love this.” And I said, “Really?” And she said, “Yes, you need to do something with this.” I said, “Okay.” So, I reached out to my niece who is in college and an illustrator - that’s Megan Starling.
Oh, that’s amazing.
And she is a fabulous artist and being that she is in college, was always in need of money for books, et cetera. And she and I spent about a year going back and forth working through the art work and the story of the book. I’ve put it out on a couple of the supporters DID sites early on, just to get their take, to see.. is this something that you guys think is needed? Is this helpful to you? Any input or thoughts on it? And I really had an overwhelmingly positive response. People were coming back and saying, “Yes, this is good. I didn’t know how to have this conversation with my kids.” Or, “You know what, I’ve actually sat down with the PDF that you sent across Jeff and looked at it with my kids. This has been a great way to talk.”
That’s amazing.
And it’s funny and light, but it’s also serious. And I got great feedback that way, and I actually...as I was doing it...I wouldn’t say...I guess I would say, my understanding or my sensitivity around DIDs has evolved, so I made some changes in the book to help what I think the storyline to be a little more inclusive. So, there’s a line in it that says, toward the end that says, “I’m gathering up all of the parts”, which originally, when I had written it had said, “I’m gathering up all of my parts.” But then, as I thought about that and my understanding has grown, and I was like, if I put “my” there, that is a sense of ownership there that I don’t think that’s right.
Good for you. Good for you.
So, I’ve made some changes along the way, so that it can be very inclusive for however people want to read and interpret the book, because as we were talking before, people get very sensitive around words and terms, and I get that. I understand that. I don’t want someone to get lost in getting stuck on something in the book. I want them to be able to use it as a starting point to talk with their family. I’ve also had a number of people say, “You know what, I don’t have kids. But, my internal kids loved this.”
That’s amazing. What a gift. Thank you!
I’m just hopeful that it finds an audience. I’ll say this, I had a particular moment this past week when my father came up to me and said, “I read your book. You and Megan did a great job with that, and it really helped me understand. You should be very proud.” And as a son, I was like, yes, but even more so as an author...I feel haughty saying that...but okay, as a storyteller, I felt very proud because it did what I wanted it to do.
That’s amazing.
So, the next steps I’m working on trying to get an audio version and a little video version done that I can put out there. So, whether someone finds the book or finds the video, whatever they...however they find it, if it’s helpful, then I’ve done my job. Like I said, I was able to use it to really talk with my kids and my son was sitting with a copy on the floor reading. As I said, he’s just turned six, so it’s a great way to normalize. And that’s what needs to happen. The discussion needs to not be around, oh is this person...is this real, is this fake, is this the way it’s portrayed in TV, is this like the movies. That was the other thing that kept bubbling up with me, all the things going on in the Hollywood portrayals. I don’t want that. I don’t want the Maury Povich to be the baseline for the discussion. At least not with my kids.
That’s amazing. It’s really impressive and it’s beautifully done - beautifully done.
Thank you. Thank you, thank you.
Well, I love it and I so appreciate you telling us about it and I will put a link and more information about it up on the blog. But also, I appreciate you just sharing your love story. It is beautiful and the experience of finding ways to show support and love through the whole process of discovering Dissociative Identity Disorder as well as just loving her as a whole is just a beautiful, beautiful example. And you also drop some pretty heavy pearls of wisdom that we’re going to have to process for awhile. So…
[Laughs]
Thank you for that as well.
Good, I very much enjoyed the discussion and thank you so much for reaching out and having me on.
I’m so grateful!
Thank you for joining us with System Speak - a podcast about Dissociative Identity Disorder. You can listen to the Podcast on Spotify, Google Play and iTunes or follow along on our website - www.systemspeak.org. Thanks for listening.