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Rolodex switching and amnesia

I am still recovering from my inpatient stay at Sheppard Pratt’s trauma program. I suppose your average person doesn’t understand why one would need to recover from being in an inpatient program.

My brain feels as though it is loosely held in place, and on any given day it can spin and spin so that I don’t know which way is up. My recent 4 week hospitalization at Sheppard Pratt was like that.

I believe being in an inpatient environment is always a very triggering situation for me. As one of the therapist put it, it makes sense for me to be triggered as whenever someone paid attention to me as a child like is done at SP, it always meant abuse was to follow.

Needless to say, that trigger and the fact that truthfully I am not in control of my life behind the locked doors of SP, my defenses are at their highest.

I learned from this last hospitalization that my childhood go-to defense was to keep me and my entire system so confused that we couldn’t put two sentences together. This last hospitalization played that defense out.

I had trouble remembering things before I went in, but once in, I couldn’t remember hardly anything. My treatment team believes I was switching so much that the “Rolodex switching ” kept my memory from working. That’s one theory, and possible, but other theories are equally possible.

I am home now and I had desperately hoped my memory would improve as the degree of amnesia I was experiencing was terrifying. It is a little like temporary episodes of dementia that come and go.

My memory is a little better but still troubling. I went to a restaurant last night and was in line with my family to order at the counter. As I walked away I had to ask my spouse what I had ordered. I had been so present and in control until I wasn’t.

Today I was thinking of my son’s birthday. I couldn’t remember the day and year for sure. I asked him when his birthday was because he is still at the age where “when is your birthday” is still fun to answer. I feel guilty that I couldn’t remember.

Things seem settled down, so why am I struggling so much?

I know I am confused and nervous and certain about this new direction in my therapy.

I learned at Sheppard Pratt that I must focus exclusively on internal communication and cooperation as my most pressing goal.

Only problem. There doesn’t seem to be a clear formula and I am honestly both certain it is the way to go but dumbfounded as to how one goes in that direction. Talk about needed manuals.

I have therapy tomorrow. In the past I was never short in the talking department, but feel confused how this new therapy approach works with my therapist.

In the past, we dealt with whatever that came up, but now I realize I must be more intentional about my work.

Perhaps I will begin by remembering to bring my new system map to the appointment. Last time I forgot.

I am afraid of this new but possibly old fractured mind that works in a state of confusion. I am sure I can’t do justice to explaining how someone can operate on the tightrope between ok and blank mind syndrome (not real).

If you can’t imagine it, count yourself lucky. It is truly terrifying.

My journey has changed

Some of you may have noticed that I have been missing in action for the past month or so.

I was really not doing well and needed intensive inpatient help with managing the symptoms of my DID and PTSD, particularly the level of suicidality I was experiencing.

I decided to go inpatient and it lasted longer than I expected. If I wouldn’t have really pushed to get out, I still easily met the criteria of someone who needed to be inpatient. But alas, I always feel terribly restless and triggered when I am inpatient, so a month was as much as I could do.

I am now happily home with my family and working to transition back into my real life. Still figuring this out and hope to share it with you as I uncover the new path of my journey.

I experienced incredible levels of amnesia and confusion while inpatient, but I was still able to gain some important insights into a new direction for my life.

I plan to share these new plans with you as I unpack myself back into the real world and my real life.

For now, I can say I realize I do have a life to live while doing this work, and I don’t have to “fix” my life before I can start living it.

I am also happy to say I am not currently feeling suicidal, which is remarkable because that is my typical normal. I know better than to get overly excited about this as I know it can change on a dime, but I do feel a sliver of hope that it is currently absent.

Speaking of hope, I did manage to gain some hope despite the incredible amnesia, confusion, transference, and uncomfortableness I experienced staying in this inpatient unit. Nothing like being locked up and power taken from you as a survivor that is seemingly required for inpatient treatment.

I am feeling well today and I am looking forward to sharing my new journey with you, and my experience during my inpatient stay.

Thank you from the bottom of my heart for all the support I received from you all.

With love and hope to you all,

Kathy

Lost and alone

I have been quiet lately, feeding off my mom’s voice in my head that if I don’t have anything nice to say, I shouldn’t say anything at all. So, I am breaking the rules.

Lost would probably best describe how I have felt most of the time lately. I can’t remember things, much more so than usual. My sense of “time” is completely off. Can’t tell you if it has been one week or 2 months since things have happened.

I am living day-by-day, not knowing if I will make it through the day.

I plan for my future and my demise all in the same hour.

I am suffering from wicked thoughts of suicide that are in my brain but don’t feel like my thoughts. It’s confusing.

I try not to act on any of the suicidal plans, yet at times I find myself getting up to go do whatever is my demise of the hour. Most times I catch myself when I am getting up and am able to stop myself. Sometimes I haven’t been completely lucky with that strategy.

Some days I feel morbidly depressed. I have resorted back to hiding in my bedroom as much as possible. I spend countless hours staring out the window, and suddenly I have an extreme depressive feeling, which follows with a graphic idea of killing myself.

I don’t know where these graphic suicidal ideas are coming from as I am much more practical than to think of these ways if I was suicidal.

I imagine there is extreme anger and pain behind the graphic ideas about my demise.

As I said, it gets so confusing. I think parts of me are “leaking” into me in a way that I cannot distinguish me from them. As such, their thoughts seem to make perfect sense to me.

Yes, I should stab myself with a butcher knife and lie down in my bed to bleed to death over night.

That is so not me, but yet it is me.

I would never do that to my children, but in my head it feels as though I will.

The world is so lonely for me right now. I am fortunate to have a spouse, therapist, and friend who know about some of this and are trying to get me help.

But, I worry no help exists.

In my life in the mental health system, there have been times when I know if I just went and worked on “x” I would stabilize or feel better. Honestly, I have no idea what x is for me this time.

Lost, pushing through each day hoping to gain some clarity the next day. It doesn’t come.

I am wasting my life, lost, never feeling grounded to this earth and my life.

The clock ticks, and ticks, and ticks. My dilemma stays the same. My fragility about my life continues.

I must have some hope hiding in me somewhere, but it is well hidden. The confusion in my mind keeps it from coming to surface. It is amazing to see the mind work so intensely against itself.

I plan for the future. I plan my demise. I don’t know how this will play out. I hope for the best, whatever that turns out to be.

DID is NOT a party

Lacking a consistent voice makes me confusing to those outside and inside of me.

At night, I often write things, whether a blog article, letter to someone, or a quick text. Sometimes I shop on Amazon while others are sleeping in my house. The difference for me is when I wake up in the morning it is a gradual unfolding of what I did the night before.

I see e-mails from Amazon alerting me to a purchase I don’t remember, and often don’t need.

I sometimes get an emergency call from my therapist before I have even awoken asking me if I am alright. That usually means some part of me has been texting or emailing her.

I almost never remember blog posts that have been written under our Mistaken Survival blog. I read them over and over, each time feeling like the first time I have read it, even though it was authored by this shared mind of mine.

I have learned to shrug and stay quiet in response to other people’s reactions to something I have done that wasn’t me. I kind of freeze because I know it was me, but it also wasn’t me. What’s the protocol for that scenario?

The mind is so adaptive. It is amazing I get through the days, but somehow I do.

It feels a lot like being lost, then found, then lost, then confused, then found, and on and on.

Unfortunately, this makes for a really spotty memory. And though I get by with the adaptive skills of my brain, it leaves me empty on the days I have the capacity to think about how little I remember about my life.

I read earlier today someone writing about how they don’t think of Dissociative Identity Disorder as a disorder at all. They see it more of a blessing and an alternative way of living.

Though I try my best to respect other’s differing opinions, it pisses me off to hear someone who has this disorder glorify it and act like it is a positive.

Here is the one true thing most people believe about DID (though not all parts inside of me agree with this opinion): if you have DID, it helped you survive as a young child when your life was so traumatic and overwhelming that your mind would not have survived otherwise.

If you truly have DID, it means there is major distress going on in your life. You can’t get the diagnosis if you are not impaired in some way.

Though I love all parts of me, even those I disagree with or can’t understand, there is nothing wonderful or great about the way we live.

I wouldn’t wish this chaos and confusion and missing life on my worst enemy. It sucks. It is not fun.

Some people describe elaborate parts who have hobbies and like to play like children. Those parts for me are hurt and damaged, and they are not having fun. They are mostly terrified every minute of their experiences.

Carrying around trauma on a daily basis and trying to survive is not fun. My life is extremely difficult, and profoundly sad due to the lack of connection I feel to the world and those in it.

This is no party. For me, it is a serious ordeal of surviving a life of torment and confusion.

I’ll let you have your opinion, and do my best to be respectful, but I can’t make that promise on a bad day.

The slowing clock on my madness

I have been trying. Really hard. Trying to get my life back. Taken yet again November 2014.

I feel like a failure. I fail myself over and over. I fail my family. My friends. My therapist. Most importantly my children.

Stuck. I have been stuck so much of the time over the past 3+ years. I can’t move. Can’t get out permanently for any length of time.

I am supposed to be the master of my own life. I try, but can’t feel it or make it work. Sometimes briefly, then it crashes down on me hard.

Frustration with myself. Sometimes I know what is wrong with me. Those times I eventually fix it. Climb back to looking semi-normal for those that need it from me.

Lately, I have no understanding. My preoccupation with death. My daily internal conversations. My fantasies about it. It doesn’t end or slow.

I try to be positive. I take the pills my DNA says should work for me. I take the supplements they recommend for me. I do my best to have movement in my life. I try to keep my stress level down and reduce the toxins in my life. I go to therapy.

Still, my feelings of suicide rage through me. Every day.

I try to act as if it is not happening in hopes of fooling myself out of it. It doesn’t work. It waits for me and grabs me solidly every time my mind has a moment to itself.

People say you should get help with this. I want to say, oh, ok, let me go do this so I can get on with my life.

I know help doesn’t exist for me, which is the scariest thing of all. I want it because my family needs me to get it, but I cry inside knowing it doesn’t exist. It is not there, just as I am barely still here.

I know you optimists, or those unfamiliar with particular kinds of madness, don’t agree. You think I am giving up. I have lost my way and just need to find it.

I am doing everything I can. Nothing is working.

I am smart, yet I fail myself. Stuck in the maze. I have always hated mazes. A weak point for me I guess.

No one can save me but myself. But I can’t figure it out. Though I try to look stronger on the outside for those few who are paying attention, I am actually weakening on the inside.

I want to see my 13 year old develop into the amazing child she is. I want to help my 6 year old make the baseball All Star team. I hold these feelings for short moments, then they escape me and I am back in purgatory.

There are those that care for me, but at the end of the day they don’t know what to do to help me. Most of them are barely holding onto their own lives with mediocre sanity.

It doesn’t matter the back story of how I got here because I am here, and the backstory changes nothing.

I love those of you who say you are not giving up on me, but truly have neither the time or energy to try to help what appears to be something not to be helped.

I am not seeking your pity. Don’t feel sorry for me. Feeling sorry for me has never helped. Changing the world does. I wanted to do that, but my inner demons have stopped me dead in my tracks.

Feel pity and empathy for my family as they deserve better than me.

I think they know how much I love them, but maybe they won’t understand the failings of my mind, my inner turmoil about the person I am. The person my family of origin made me into.

I pray my children and spouse have more faith in God than I have been able to hold. I have fought it my entire life, trying to understand why God has not been merciful in the torture he has brought into my life.

Children don’t deserve what you have given me. You say you love me as your child—this is not love. I will not accept man’s free will over your ability to love and be powerful. You did this to me, without mercy, and you expect me to believe you love me.

You have hurt my kids. You have ruined the life I was given. And for what, some lesson about mankind that only a few people will know?

Though God has decided my worth, I ask each of you to pray for my children and my wife. Give them peace and love and understanding.

I have tried so hard to do this for them. I have tried unsuccessfully to get help for my complicated madness.

The places to turn for help are evaporating. The seconds on the clock are vanishing. The madness of the mind wearing out.

My heart has beat for my wife and children. I have fought for them. My battle is losing. I hate myself for not being able to outsmart it.

Hold my family in your prayers and wrap them in the love they deserve.

Blessings to you and yours.

How DID creates uncertainty

This topic is laughable for me, but I am going to try to write about it anyway.

I feel uncertain, unclear, unsure, and confused throughout each of my every days. Those terms might all be synonymous, but I actually don’t know at this moment.

I am married, and I don’t know how my spouse has tolerated me for 20 years. She asks me what I want for dinner, and I don’t know. She wants to know if I want to go to such and such happening this weekend, and I don’t know. Do I need anything from the grocery store? I don’t know. What did I do today? Not really sure. How are you feeling? I don’t know.

The list is endless, and something she has to deal with everyday. Needless to say, it causes her a lot of stress.

Internally, it causes me a lot of stress, too. I try so hard to answer my own questions of myself, and I can’t come to an answer that sticks longer than 30 minutes.

As someone who experiences Dissociative Identity Disorder (DID), my brain operates very differently than a person who is what we call a “singleton.”

My life is like living in a giant high-rise apartment building. Lots of people live in my brain, and sometimes they stay holed up in their apartment, and other times they are out and about giving me advice or commenting on my life. These residents have the ability to influence my thoughts and behavior, and frequently I don’t even realize they are doing it.

Probably most difficult of all, my fellow residents have the ability to take my brain and body out for a spin, and they get to have their say with what happens in our life at those times.

My wife doesn’t always notice when this happens. Sometimes she just thinks I am in a different mood. She does catch me when one of the other residents acts very differently than me, like if they act like they are 8 and don’t know how to get food from our kitchen. She also catches me in an amnesia mess when I am under a lot of stress.

Recently I have been under a lot of stress dealing with suicidal feelings, loss, and trying to figure out if I need to go into a hospital for my own safety.

My feelings about all these topics change from hour to hour. Parts of me (other residents) can have really strong opinions about things, so my wife is rightfully stressed and confused when I tell her I am fine and not going into any damn hospital and ask her to stop talking to these places she has been trying to arrange care. The next day, I will often wake up feeling complete opposite, and lately haven’t had the memory for these conversations I am having with her when I am completely overwhelmed.

I get her frustration as I experience it with myself.

My brain is inconsistent and all over the place with things. I have a hard time distinguishing my thoughts and feelings from the others residing in our residence.

I can have a moment where I feel certain that killing myself is the answer to the situation I am in. Then later, I think of my kids and how I can’t do that to them no matter how much pain I am in. Other times, it feels like my kids are so far away from me that the voices in my head make sense when they convince me my children will be better off without me.

It’s a lot of daily confusion that my brain and body has become accustomed to.

I try really hard to know what I want or what is best for me, but the reality is I can’t figure it out.

This latest bout of intense suicidal feelings has been especially hard. Right now I am having a rational moment and am concerned by the thoughts and behaviors around suicide coming from me.

On one hand I know I should be in a hospital for my own safety, but the confusion starts when I begin thinking how oppressive, dangerous, and uncomfortable (they are cold, exhausting, you have to eat unhealthy food, they won’t let me take supplements, they won’t let my younger parts have a stuffed animal to comfort them, they have abused me in the past, they won’t let you leave, and they often want to heavily drug you). And these are only a few of the negative trade offs you get for staying “safe” by going to a hospital.

Days go by, and I have no idea what to do. This is how I operate. Heck, I scare myself when I realize my life is going by quickly while I am in this haze.

I struggle with whether I should make plans for later in the week because I have no idea if I will be home or in a hospital. I usually don’t make any plans, then I have missed out on more living.

In the meantime, I have engaged in suicidal behavior that I have kept completely secret because I don’t want others making this decision for me.

I know, it makes no sense. I can’t make decisions and don’t want others to make decisions for me either. It seems like my lack of decisions are safer than others making them for me.

Welcome to my world.

Lack of mental health resources increases risk of suicide in those with Dissociative Identity Disorder

It’s frustrating to see the public service messages and articles discussing how we need to get people who are having suicidal ideation into treatment centers to prevent them from killing themselves.

Though I appreciate the sentiment of the anti-suicide campaigns, the reality is people who have a diagnosis of Dissociative Identity Disorder (DID) do not receive the same access of care afforded to every other mental health diagnosis in the DSM V.

DID is the most stigmatized diagnosis within the mental health community.

Interestingly, DID is considered to be amongst the highest risk for suicide. Some estimates say that at least 70% of people with DID have attempted suicide.

With those staggering numbers, one would think the mental health community and the suicide prevention community would be working to improve access to mental health care for those with DID. Nope.

In the 1990s, there were more therapists, psychiatric hospitals, and day treatment programs available to those with a DID diagnosis. The False Memory Foundation (largely supported by those accused of child abuse) succeeded in its goal to end treatment resources for those suffering from DID. This result protects child abusers.

Today, it is extremely difficult to find an experienced outpatient therapist who is willing to treat DID, so many of the highest risk people either have no mental health therapy, or are working with a therapist who doesn’t understand the complexity of treating DID.

Most people who suffer from DID reach points of crisis where they need extra support and hospitalization.

The extra support could look like a day treatment program that understands trauma and dissociation, but after all my research in the United States, I am aware of only 3 programs serving this population (I am not sure that one is still operating) that accept insurance as payment. Since day treatment programs are designed to be community based, it is not very helpful to the majority of people suffering from DID who don’t live in those communities.

Without trained therapists and lack of day treatment programs to provide extra support, the person with DID is more likely to end up in a serious suicidal crisis with an extreme lack of resources available to them.

In a best-case scenario, the person with DID has private mental health insurance or Medicare, both of which offer psychiatric hospital coverage.

Here’s the problems people with DID run into when they are in need of intensive crisis intervention:

1. Although trauma hospital programs have become more common today, these hospital programs will not treat people with DID. They flat out say “we are not set up to treat DID.”

Huh?

I imagine when I hear programs disclose that information, it likely means one of these things:

-we don’t want someone with DID because it will be disruptive to our program, which is completely unfounded.

– we don’t believe these people really have DID, so we don’t want to work with them. People often like to believe this is a rare disorder, it is not.

-since people with DID have a higher risk of suicide, we don’t want to risk our liability by accepting them into our program.

2. There are only six hospital programs that accept insurance that have proficiency in treating DID. I will name them here with no endorsement of them since they are of varying quality:

-University Behavioral Health in Texas

-Sheppard Pratt in Maryland

-River Oaks in Louisiana

– Del Amo in California

– Forest View in Michigan

-Psychiatric Institute of Washington (PIW) in D.C.

Now, this may seem like a lot if you believe the disorder is rare, which it isn’t, and if you don’t take into account that people with DID are likely to have limited emotional and financial resources to travel to these destinations if their insurance actually covers the place.

In addition, these hospital programs more often than not have a waiting list to get in, which doesn’t work for the patient who is truly in a suicidal crisis.

California has created a few really nice DID programs that offer cutting-edge therapies for people with DID. Only problem, these programs are only available to those who can self-pay, typically $40-50k a month. Unfortunately, the symptoms of DID are not likely to coincide with being wealthy enough to afford such places.

3. You might be asking why doesn’t a person with DID just go to their local community mental health hospital? This is another huge topic, but I will do my best to sum it up.

Your typical community-based hospital doesn’t believe in the diagnosis of DID, so when you enter that system you are likely to get a diagnosis of schizophrenia, borderline personality disorder, or bipolar. When you receive those diagnoses, it means the mental health system is largely going to solve your crisis through intense medication therapy. There is no medication that treats DID, so getting blasted with medications does more harm than good.

Also, it is important to understand that people with DID have been highly traumatized in their lives, or they wouldn’t have the diagnosis to begin with. By asking a person to enter a community-based mental health program, you are guaranteeing that they will be re-traumatized by the way they will be treated and the lack of understanding of what is happening with them.

Sadly, we recently witnessed the prevalence of sexual abuse in our world through the “me too” campaign.

People with DID are not born with this condition. It is a result of being subjected to severe trauma in early childhood, typically severe sexual, physical, and emotional abuse.

I wonder, where are the crusaders for this population of victims?

Where is Oprah Winfrey, Brene Brown, Angelina Jolie, Demi Lovato, or any other person of influence who could make a difference in the suffering of those with DID?

I don’t even understand why the for profit hospitals aren’t all over trying to serve this underserved population simply to make money.

Somewhere in mental health history it was decided that the DID population is invisible, expendable, and just don’t matter.

The irony, those of us with DID come from families where the message that we don’t matter was drilled into our heads. Sadly, our current mental health system only reinforces that belief.

My final thought, would the suicide statistics be as high for those with DID if we had adequate resources for those suffering with this disorder?

Does it matter to you?