29 → Indiana, USA → Photographer, Painter & Writer → Dissociative Identity Disorder (DID) → Art Therapy, Talk Therapy, Medication.
R: Hi Erika, tell us a little bit about yourself…
E: Today, right now, I am Erika. It’s amusing I felt the need to say that.
R: Where do you live?
E: I’m from the south side of Chicago but we live in Indiana now.
R: How old are you?
E: Just celebrated my 29th in April. Never thought I’d make it to 29.
R: What do you do?
E: I can no longer work, unfortunately, but I will always consider myself a photographer. I miss it. Lately I spend a lot of time focusing on writing and painting…
R: How long have you been doing it?
E: Most of my life really, some part of me has always worked in the arts.
R: Do you enjoy it?
E: Yes. Collectively, we love it. I even have one of my first 35mm cameras tattooed on my right hip. For those stranded in the digital desert, that’s a film camera.
R: What did you do before?
E: This made me laugh, deep belly laughter. I have no idea. I do know one of my parts worked as a model for a while, others painted murals in the city and various things. It’s an ongoing joke that I’m a “jack of all trades” and I’ve had more jobs than everyone I know, combined.
R: Did you study?
E: I tried. We tried. Unfortunately, that wasn’t possible. I do not struggle with education/learning disabilities. Nothing like that, but when you ‘black out’ for days, weeks or even months it makes a schedule difficult.
R: What does home life look like – pets / kids?
E: My husband and I rescue ferrets. Home looks, fuzzy and busy. Very, very busy! They’re funny and wild little creatures, but I can’t have children so they’re our kids & we love them very much. Eventually, once we have a house, we will be getting a dog as well. Animals have always been a MAJOR part of my life. My husband does struggle to understand the DID & life with them can test the patience of a saint. We’re working on this together…
R: What makes you happy?
E: That’s a good question. A few years ago one of my parts would’ve just taken over and said something like, “oh ya know. The usual. Fam, friends & good food.” But that’s complete bullshit. Nothing made us/me happy. Nada. Now I can say, speaking about my life and looking towards an actual future. I meant it when I said I never thought I’d make it to 29. Now though, well now I don’t want to merely survive, I want to live. We want to live.
R: When did your DID begin?
E: I do not know the exact day/year but I know it began when I was a very young child. Before age of 2 I was already fracturing, dissociating.
R: How did DID affect you as a child?
E: I can honestly say, I don’t know. I don’t remember many aspects of my childhood. I have some memories, but many things are dream like, as if I were watching it from above. Kinda freaky sometimes. Some of them just shrug and say it wasn’t easy. It made her a “freak” & an easy target.
R: Has it gotten worse over time? or better?
E: It continued to get worse, much, much worse… Over the last few years, after we finally found a fucking Doctor things have been getting better. We’re working on it.
“It’s like a big group of huge heavy guys trying to get through one small doorway at the same time.”
R: How would you describe DID in your own words?
E: Hmm… Well, I describe it a few ways. One being, it’s like a big group of huge heavy guys tryin to get through one small doorway at the same time. This is what it feels like when they argue and fight to speak or for control. The second would be it’s like being kidnapped. Only you’ve no idea you were kidnapped. Ya just wake up one day in a different city, state or country. Yes, country. That’s what it is/was like for me, DID looks different for everyone. My parts are a bit extreme in some cases, especially my protectors.
“Normal is an Illusion. What is normal for the Spider is chaos for the Fly.”
– Morticia Addams
R: How does DID interfere with a normal day?
E: Hahaha! “Normal is an Illusion. What is normal for the Spider is chaos for the Fly.” It’s one of their favourite quotes. A ‘normal’ day looks like anyone else’s, now. I just share it with others. Wake up, orientate myself, coffee, breakfast. Get the weasels fed and out for some play time. Clean cages, pick up the house if I can. On high pain days that’s not possible so one of my parts, usually Minny, will do some of the cleaning laundry, dishes, caring for the weasels etc… I’ll paint or Toon (a younger part. She’s only 10 & ½) the half is very important. Don’t forget the half! Bob (one of my parts) might write a bit, she’s been working on a book for a while now. It’s about our life, but she doesn’t go on and on listing off trauma or things like that. This is much different. It’s actually funny. She won’t let me read much of it but what I have seen is good and had me in stitches. My husband will come home we’ll talk a bit, ya know, you’re basic everyday mundane living.
R: Do friends or colleagues notice your DID?
E: Tricky question. In high school it was a joke that I had multiple personalities, not so funny now, but no. The simple answer is no. They, my parts, protected me for a long time! One way they did this was by making me appear…normal. We have told very few in our personal life, so far, but are gaining some traction in this area. I am and have been, always, a very private person.
“Now that we are speaking about my mental health concerns I imagine I will lose friends and some family. But that speaks to their character, not ours.”
R: Does it affect your relationship with them?
E: Oh I’m sure it will more and more. Now that we are speaking about my mental health concerns I imagine I will lose friends and some family. But that speaks to their character, not ours.
R: Have you found any positive aspects of DID?
E: Well I don’t do laundry or dishes. Seriously, who would want to do those things? Just *poof* they’re done all of a sudden. Kinda like my own personal cleaning genie. I don’t notice the hours went by because I wasn’t there and shit gets done. It’s a nifty little perk. The other obvious positive is I’m still here, livin and breathin.
R: Do you think your life would be different without DID?
E: Of course it would be. How could it not? One thing I know without doubt OR shame, now, is I would not be alive & talking to you if it weren’t for them.
R: If you had the option to lose your DID would you?
E: Ya know… I don’t think I would. They’re part of me. In all their extreme roles, the unbelievable madness, at times, it’s who we are. I’m ok with that now.
R: Do you showcase your photography online?
E: That’s not something that we share much. We’ve done weddings and hate doing them, haha! It’s just not our thing. Performance work, musicians, models and even natural disasters that’s our thing. You can find some on Facebook/Twitter or Instagram but not too much. A family member had thrown away A LOT of our work years ago; sweet lady, you’d hate her. Anyways, I just can’t hold the camera well enough, anymore. E she’s a real talent though. She’s shot some amazing things. I do a couple events a year, for the local Humane Society. Had another photo published of some amazing musicians. I feel pretty lucky to be able to have done what we were able to. Even if I physically can’t do much, anymore, not many people can say they did what they loved.
R: Did you study photography? How did you get started?
E: I/we fell in love with it very young. My gram was showing me a book she picked up of old photographs and some famous photographers. One of the images that caught our eyes was “Migrant Mother” by Dorothea Lange. You need to understand that I did not “feel” things. I faked many things very well, but that image made me feel. I was hooked. From that point on I always had a camera with me. In high school we took some snap shots of a few friends who were in various bands and did local shows, then just sorta kept doin it. We’ve worked at different photography studios, ya know the kind, fast food photo studios. Come in, we get your families memories on film and send you on your way. It was fun. We all very much like working with kids and they’re extraordinarily good at it. One in particular enjoys working with special needs children, she’s very patient & knows people and what they need very well. She takes her time and gets things right. Many of them still email her from time to time because they miss her. So she’ll go every once in a while and shoot their family portraits.
R: And you’re a writer too?
E: Yup, again, another part but I do enjoy writing as well.
R: What/where do you write?
E: They’ve written for various websites over the years, a few local Chicago papers. Small stuff, but they enjoyed it. Recently we began reaching out to a few groups who run sites for people living with mental health problems and those fighting to end the stigma surrounding it. We just joined Defying Shadows and are looking forward to it. You can find a couple recent pieces via Stigma Fighters and TeamNotAshamed. Bob & E found them on Twitter and we reached out. Another piece is coming out at the end of May. Bob, another part, she found this amazing young girl who runs a website that shares stories of people with various mental health struggles. She’s doing some great things bringing all these people together.
R: Have you been published?
E: I have not, but one of my parts has. One of my photographs was recently published. That was pretty cool, as it was MY first time being published, but they’ve been published a few times.
R: How does DID interfere with your working process?
E: Oh it’s a process alright. I think, honestly, I bother them more than they bother me. We’re working more on coconsciousness, it can be tricky. They’ve always just taken over and worked together. Now though they’re trying to include me in my life. It’s very considerate of them. I’m quite a fan of sarcasm and laughter.
R: How do you manage to stay on top of it?
E: They’re always on top of things. Now, we work towards helping me begin living and learning about my life, but I can always count on them.
R: Have you received any great feedback / response?
E: Yeah, sure. Over the years they’ve had our/their photography published. Some of the writing has been as well. We are more interested now in having a voice, before Jynx (yup another part) would try and “help” by taking someone’s work and having it published. As you can imagine that always caused some major arguments. “People seem to like what we have had to share or say over the years. Some of it was through various art styles or writing but now they’re intrigued by Erika’s point of view. “It’s cool.” -Bob
R: Have you been officially diagnosed by a health professional?
E: Yeah, yes we have. That took far too long.
R: What made you see a doctor?
E: Well, for me… I began realizing when I would get angry I’d * poof* all of a sudden that was it I was just gone and the next thing I would remember was something months later. Spring in Chicago one day then it was cold and I could see mountains. If you’re not familiar, Chicago does not have mountains. Got kinda terrifying once I realised it. I wanted to know why I was “blacking out.” My parts, however, we’re trying to see doctors to help me and each other, Jynx in particular. She’s a protector but has experienced her own trauma in adulthood. It took them years to find someone who would listen to them and who could help. Many doctors caused further problems and that is something I hold a lot of anger about. Finding help shouldn’t have taken as long as it did.
R: Did they prescribe medication?
E: Over the years, yes. Some had & others didn’t.
“We had tried various medications. There isn’t some magic pill for DID”
R: Do you / Did you take medication?
E: We had tried various medications. There isn’t some magic pill for DID, but sleep was a big problem. Big, doesn’t fully cover our struggles with sleep. Myself & some of them have a serious fear of sleep. It is not safe, so we just didn’t. Anxiety meds & antidepressants had helped at different times, but sleeping meds either helped or they caused more problems. Right now I/we do not take any medications other than OTC’s.
R: Have you seen a therapist?
E: Many. A horrifying number that at the moment we don’t care to share. I have. They have and it is shameful the number of docs they tried to get help from. Now though, we have a great therapist and she is actually helping.
“The best way I’ve found to manage it is through speaking to them. I’m learning about them and about the things in my life I missed. It’s a process.”
R: How do you best manage DID? – medication, meditation, yoga, alternative medicines or otherwise?
E: The best way I’ve found to manage it is through speaking to them. I’m learning about them and about the things in my life I missed. It’s a process. They all enjoy various things, but “art therapy” has been a big help and animals. Animals have always brought comfort to us, one in particular. She’s sorta the Doctor Doolittle of the group. Remember that movie? Rex Harrison, a classic but she’s very much like that with animals. All sorts, they just are drawn to her.
R: Did any treatments work?
E: Talk therapy. Talk therapy. Talk therapy! Medications in addition have helped, not many though. Sleep was our greatest struggle.
R: Do you feel as if you’re in control now?
E: Another one that made me laugh out loud… But yes. More so now than ever, we’re working on it. I am now present EVERY day! Major change from only a year ago.
R: If you could go back and give yourself some advice on DID, what would you say?
E: That’s easy, you’re not crazy. You have DID. I never knew. No idea, none. I had no idea what was going on, I was a soulless child. Just getting through, surviving, I’ve had these “black outs” forever, but couldn’t get help. Which is why they, my parts, worked so hard to get help when I was an adult.
“It’s a mind game, control. Take the control and their power is gone. As a child, how can ya know that though? I still struggle with blame & shame, but I’d have started speaking up for myself a long, long time ago.”
R: What would you do differently?
E: I wouldn’t have given up, I would’ve risked losing my one safe person and told her what was happening. I believed the things my various abusers told me. It’s a mind game, control. Take the control and their power is gone. As a child, how can ya know that though? I still struggle with blame & shame, but I’d have started speaking up for myself a long, long time ago.
R: Do you tell friends, family and colleagues that you have DID?
E: Friends, yes some… We are working on that more. Family, nope. My sister is the only family member who knows about it.
R: Do you know others with DID?
E: I do not, but again, my parts have over the years. In person and more recently a few people online. Those they knew in person, they had made an attempt to help and did.
R: How do you educate yourself on management and resources? Do you read specific blogs, magazines or news articles?
E: That’s actually part of why we’re speaking out more. There isn’t much to educate yourself with on DID and what it really looks like. We’re working on that…
R: Have you read any great books about DID?
E: No. Not so much. There are some out there, one of my parts spoke with many ppl in the DID Facebook groups that highly recommended the book, Dear Little Ones. Helped many littles and others but I have not read it yet.
“Twitter. There’s a great mental health community on there. I’m beginning to speak with some of them more now and they really are some amazing people. The stigma needs to end so people can get help.”
R: Or seen any movies?
E: Frankie and Alice with Halle Berry is one, but nope I’ve never seen it. They have and thought it was ok. Jynx really liked United States of Tara. We love Toni Colette. She rocks!
R: Do you follow any youtubers or other activists?
E: No youtubers or vloggers but a few are really getting into Twitter. There’s a great mental health community on there. I’m beginning to speak with some of them more now and they really are some amazing people. The stigma needs to end so people can get help. Something else we’re reaching out for and working on with others… Stay tuned.
R: Can you recommend any therapists / doctors / specialists / coaches / mentors / clinics / foundations?
E: Only one. The Mayo Clinic in Jacksonville, FL. One amazing Doctor there saw them. As I said before, we tried for a horrifyingly long time to get us help. He helped. He referred us to the therapist we see now. She also helps, immensely. More than we thinks she realises.
R: What’s on your horizon for 2016?
E: Well this Friday we will be speaking to a group of doctors about living with DID. Bob and E will be discussing some of the seriously screwed up things doctors have done and said… Do’s and don’ts with them etc… We have seen dozens and dozens, some could have helped eventually but it was always something. The mental health “professionals” out there and available to people are truly lack luster and some are down right terrifying. We also will be going to a few fairs and painting. It’s what I can do now, I’m physically very limited. We are also going to be trying to get some physical health concerns taken care of, but without insurance it’s proving very difficult.
“We are also going to be trying to get some physical health concerns taken care of, but without insurance it’s proving very difficult.”
R: What next for your DID?
E: Living & Learning. Growing together and helping my younger parts that are stuck in their trauma. It’s a long slow process but worth it.
R: Anything else you’d like to add?
E: Living with DID can be truly frightening at times, but WE are not. They all exist for various reasons. When I was very little I began dissociating, then my brain straight up splintered into pieces in a way to survive. This never stopped until my early 20’s. Jynx met my husband around that time, he was a beautiful, flawed, and safe person. We, collectively, never knew someone like that. I guess our point is to anyone reading this, don’t give up. I wanted to end my life many times starting at the tender & tired age of 9. It’s a cliche but things can get better. My life isn’t perfect but it’s mine. It’s my life now and I own it. We don’t merely survive anymore, now, well now baby we live. Thanks for this Rodger.
R: Thank you Erika!
Rodger Hoefel in conversation with Erika Reva
Cover Photo supplied by Erika Reva
Other images from Erika’s Twitter