The Ghost in The Suitcase: Traveling with Dissociative Identity Disorder

A small window into what it's like to navigate new places with Dissociative Identity Disorder.

If the movies were to be believed, DID is primarily about all the other “personalities” you might be carrying around in your head at any given time. In this conversation, often filled with the sort of melodrama normally reserved for daytime telenovelas, the nuances of living with this rather disabling condition get overlooked. So, let me tell you what it was like to wander NYC knowing that I could black out and wind up virtually anywhere, in any situation, without being able to do anything about it.

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Meet The Ghosts, Buster.

When I was in my early 20s, I believed in ghosts. The ghosts followed me everywhere and they often did things in my environments that I had no rational explanation for (like waking up at 3AM to find all my cabinet doors open and the stove burners on). Also in my early 20s, I worked up the nerve to tell my therapist about my ghosts. That’s how I found out that I have Dissociative Identity Disorder, and have since I was a child.

Since then I’ve had over a decade of intense therapy that taught me about the others who live with me, what their needs and purposes are, and about my condition. Also over those years, I became incredibly disillusioned with community-based healthcare systems that aimed to “teach” me about my disorder while providing very little help with the actual day to day problems I have as a person. Most of the “education” out there manifests as “let me tell you about my alters (a term I loathe),” rather than on the more pragmatic coping tools I actually use in my daily life.

Evey’s Moving Apartment Building

Think of me as the most common person running the apartment building that is my body, sure there are others there, but I need to make sure the apartment building is taken care of even when I’m not actively “at work” (if you will). There are times I have to sleep, take breaks, and whatnot and other people man the shop, as it were. Using the employee metaphor, I’m the overzealous shift manager who can’t seem to get enough overtime.

If you’ve ever worked a morning shift in a restaurant, I’m betting you’ve heard someone yell some expletives followed by “who closed last night!?” And that’s basically my life. If I want *my* life to be pretty good, I have to be on good terms with the other people who help run the apartment building. I have to give them what they need to succeed in their tasks, otherwise they can cause some serious problems for me when I’m back on duty.

Let’s Get Packing

The first step in a successful outing with myself is being realistic. Most of wherever I’m going is out of my control, and I have to know what I’m getting into as much as possible.

It also means knowing my own triggers. If I get triggered, one of the others gets put in charge of the desk while I “take a break” and I don’t think they much appreciate being put on-call with no notice, especially in emergency situations.

Before I stepped foot in the city, I had to think about what triggers of mine I knew about and could do anything about. Heat and humidity are a massive tagteam trigger for me, and it was going to be pretty warm. I also needed to make sure that I knew what to do if, say, someone grabbed or touched me without me knowing it (something that could activate “security” in my Apartment metaphor).

The first solution was a paper fan, just like the ones of olden days. As long as I could keep moving air on me, I wouldn’t feel like I was drowning or suffocating and I probably wouldn’t be triggered as easily.

The other thing was making sure to have my Xanax on me at all times, just in case. You can’t always remember to take it but *sometimes* I have a few moments of clarity before I black out. It’s better to have the option. Xanax does help me get myself out of the “red zone” of dissociation as long as I have enough time or knowledge to use it.

I also turned on my GPS monitoring for my friends and family so, in the event someone else had to take over and didn’t understand why they were in New York City, someone could find them. I also made sure to leave a note on my phone with major addresses and information for the others, just in case, so they’d know how to get somewhere safe and who we were staying with.

Last, but not least, headphones. Music can be a powerful way to keep myself in the calm-zone when I’m in an otherwise stressful situation (like being on a subway I don’t know how to navigate).

Let’s Play

We did, however, have to schedule one stop that we could at least anticipate. As y’all know if you’ve been reading for a while, one of the others is eight years old forever. The red lines that represent me being triggered aren’t all “bad” things, remember that triggers can be sights, smells, emotional states, sensations, memories, etc., that activate your body into being in the state it used to be. So, some of my triggers are what happens when I get *too* excited or I get exposed to items and memories from my childhood that bring stuff up even if they were positive.

Sarah wanted to go to FAO Schwarz on our “field trip.” I think she called it a fieldtrip because the first time we ever went to NYC as a child was on a field trip. This took a lot of coordination (most of which I didn’t know was happening until the very last minute *in* the city) from J and several family friends.

They created rules for her so she’d know what to do. She had to be on the phone with someone. She wasn’t allowed to leave the store with anyone. And she could spend $50 of our travel money to get something for herself.

She stuck to most of those pretty well, but she ended up asking one of my partners for more money so she could get a build a bear just for her.

Everyone, please meet The Sarahcorn.

Sarahcorn is a one-of-a-kind mythical creature who now lives in our home and loves to travel. Because Sarah’s special Sarah-day is in October, the Sarahcorn has to have a pumpkin skirt, of course. Since we’ve gotten back home, I’ve woken up to find this thing in lots of places around the house (or find myself in unusual places with it). This is her buddy.

This level of planning, even though I didn’t consciously do it, wouldn’t have been possible without years of therapy and learning. If it hadn’t been for that, she could have just popped out whenever she felt like it in any part of the city, gotten lost, and gotten into danger. Instead, she had a lovely and well coordinated time with Precious, who very kindly helped her assemble the Sarahcorn.

The Greatest Show

And then there was the matter of the Linkin Park concert (the whole reason I was in the city). Linkin Park holds a borderline sacred place not just for me but for everyone in the “apartment building.” I made sure to take my xanax, because between all the people and the emotional songs I didn’t know how I’d react. I also made sure to bring what I needed to record, incase somebody other than myself felt it was important to attend the concert and I missed most of it.

Throughout the concert, I can’t say that I felt dissociated much but I can say that I felt the pressure on the back of my head that I often feel when J is paying attention. Somehow, that made the night even more magical, that feeling as though we were enjoying this moment together, like two sisters should. I tried to find a Vinyl for her, because I just found out she likes to collect those, but they didn’t have any.

Returning Home

This trip went off better than I expected or even hoped. Part of the reason it went well is because I’ve learned that I can’t leave the others at home. If I’m going somewhere, they go with me and that means I have to be considerate and factor them into my travel. They, sensing my totally thoughtful cooperation with them, allowed me to have one of the greatest trips I’ve ever had and I was able to be unattended without incident.

This is the first time I’ve truly traveled that way, without order or others to keep me on the rails. I’m proud of me for handling the logistics and for how everything turned out.