The darkness of Halloween

It’s strange. Every year, I forget how much I hate Halloween until I start experiencing a cascade of shitty stuff until it finally hits me that it is Halloween month, and that never goes well for me.

Despite having inflatable Halloween blow ups in my front yard beginning October 1st (my spouse does this for our kids), I sort of dissociate that it is Halloween and that I don’t like Halloween and that it is usually a dark time for me. It takes me until about the week before Halloween to realize the darkness of Halloween is here.

Even with the constant reminder of Halloween staring me in the face, it takes imaginary messages from the devil penetrating me to understand the chaos and fear going on in my system this time of year.

I know many parts absolutely believe in these messages from the devil, but I want to say I do not, without being mean about their beliefs.

I don’t have the answer as to why parts of me feel with certainty the devil is sending messages to them through an inanimate object in my therapist’s office that looks like the face of the devil to them.

They are terrified. I just see a piece of metal that kind of looks like a scary face, but they see and feel the devil.

I try to focus on living a normal life, and fight to keep from being consumed with ideas that the devil is coming for us.

I hate the people who have scrambled my brain, body, and soul like this.

Instead of enjoying the candy and Halloween costumes of my kids, I focus on just getting through alive.

I don’t even know what all these scary feeling are about. I don’t know that I will ever know.

My brain still protects me from the madness of my childhood.

No matter how sane I try to create my life, madness will always be with me, as I am madness.

Drifting

Drifting toward health.

Drifting toward death.

It doesn’t seem like this should be so confusing, but it is.

Some days ago, a little girl, maybe 4 or 5, stood in my childhood bedroom watching in freeze mind as my mother threw out her toys into the big green dumpster my mother had wheeled into the room.

This child did not understand, as any reasonable person wouldn’t, why her mother insisted on stripping every bit of humanity out of her.

She caused no trouble in the house. She did everything her mother or brothers told her to do. She had sex with whoever wanted it. She tried not to breathe as she was afraid it would upset them. Her existence was so minimal.

Still, with trying to do everything right, her mother hated her with such sadistic pleasure.

Her mother had made sure to strip her of everything.

Decency. Humanity. Love. Free thought. All gone.

She was forced to live in a room that only had a bed and a piece of office furniture. There could be no signs of a human child living there. Only nothingness, so she would always know she was nothing and nobody.

The little girl is stuck in this place, long past trying to understand her life.

Confusion, obedience, and an ounce of pain belonged to her.

I watched her for days. She was stuck there. I was stuck watching her. I had no explanation to give her. Yes, it was all vaguely familiar to me, but I wanted to keep it “not me” because that looks like such a painful, awful existence. Who would want that?

Feelings of suicide had been circling us as a system. I was not in as much control as I usually am, partly because watching this little girl made me want to die.

So I let the others inside me deprive the body of oxygen until I reached an altered state of consciousness. Here, I could go to the little girl in the bedroom.

Like I would do with my own wounded outside children, I reached down and picked her up and held her. She had never been held before, but she did not resist me and gave in to trusting me and let me carry her away.

I held her tightly against me, with her legs wrapped around me, and I could feel her pain and confusion. It is stuck in my heart.

I wanted to promise her that she would never be hurt again, but I knew I couldn’t do that in this very imperfect world.

She had endured more pain and suffering than a nation of people.

She would experience it no more.

I delivered her to the angels in heaven as I knew of no other place that promises the end of suffering. I told her she would be safe there, and the angels would love her and take care of her.

After I delivered her, I gasped for breath to get some oxygen in my earthly body. I was barely there. I was barely making it out alive.

I struggle to care about the damage done to my brain, or my almost lost life. It seems unimportant in the scheme of things.

I look to my childhood bedroom everyday since then, and it is empty. She is gone. She is free from the cruelty dealt to her.

I am relieved to have set her free. And uncertain as to what this means for me.

Namaste

How severe neglect and abuse affect relationships

My parents did not love me. They did not hold me or care for me in even the most basic ways as a baby/toddler/child/adult.

As an adult, I know how this has affected me. I struggle to connect lovingly with other people in relationships. I don’t like to be touched. I struggle to feel anything other than numb.

There are people in my life who say they love me and care for me deeply; yet, I feel empty and nothingness and awkward to their loving gestures.

Interestingly, for me, I can feel love when it comes to my children. I genuinely love them, and I feel their love for me. I am not sure why it is so different when it comes to them.

When people other than my children say they love me, I cringe as if a dagger just went through me. I know I am supposed to give a loving reply back, but I can’t, and retreat into a state of internal awkwardness.

In case you are wondering, I am married. I don’t know why my spouse puts up with my difficulties around love, touch, sex, and oftentimes being aloof.

Sometimes, the fact that I have Dissociative Identity Disorder (DID) comes in handy as there are other self states within me who do not struggle with the attachment damage from my childhood.

I don’t always control which part of me is out, and thus I fluctuate in the level of connectedness I have with others. This can be confusing to people because they don’t know about the DID (or don’t understand in my spouse’s case).

There are times when I am home with the family and I find myself very disconnected from them. My spouse will ask me what is wrong, and there isn’t anything wrong, but a self state that has more severe problems with attachment is usually present.

Other self states may go overboard with love and intimacy with other people. These self states tend to like to drink and be social, which of course is not the best combination.

My adult self-states are mostly similar enough that even the people who know I have DID have trouble distinguishing between them. But there are subtle differences if one is paying attention. However, very few people know about the DID.

My therapist seems to think my attachment problems can be healed through therapy and working through the pain of my childhood. I disagree. Though I have much more insight into my attachment problems, it doesn’t seem to do anything to help change that this is the way I am.

She would say I am feeling hopeless again, as if depression or something is causing me to come to this conclusion. I don’t feel particularly depressed. My mind is actually fairly clear, and I see my thoughts and feelings about my attachment problems as a form of acceptance of my reality.

I don’t mean to be a Debby Downer, but I do think it is better to accept reality and try to live life as it is rather than chasing a mental health that will never come for those of us who have been severely neglected as children.

That is not to say we can’t have a different version of mental health based on acceptance, instead of forever chasing a higher level of mental health and living our lives in the therapy room instead of the real world.

Too many of my friends and myself have spent almost our entire lives in the therapy rooms chasing an elusive mental health that will never come.

Please don’t get me wrong. I do believe in therapy, and it is necessary for many of us to survive in the world. But, I believe many of us with severe trauma backgrounds are using up our entire lives waiting for the wellness to begin. It’s just something to consider.

Yes, get therapy help, but don’t get caught in the idea that you will get “cured” and then miss out on living your life because you spent it searching for answers that don’t seem to transform into wellness.

*Disclaimer, my therapist and others do not agree with my point of view.

Wrestling with the truth that my parents repeatedly reinforced into me that I am not lovable has turned off a switch in me that should be on to experience the human condition of love and care.

This leaves me like one of those futuristic robots who can show the slightest bit of emotion, but fall short of the real human experience.

Stealing a life

I stole her life. She was young and badly hurt and didn’t care about what happened to her body, so I took it because I needed one.

I was a soul in need of a body. She was a body with a soul that had died.

Body theft. Besides sounding futuristic, it sounds like a shitty thing to do to someone.

But she didn’t want to live. She wasn’t using it. It would have gone unused and possibly destroyed if I had left her with it.

She didn’t care at all.

Still, I guess I shouldn’t have taken it. I have had it for so long I forget it was originally hers.

She’s coming back for it. I don’t think she knows I have it, but she will figure it out when she gets a little closer.

She’s been lost for a very, very long time. It is not that any part of me intentionally kept her lost. She just had no reason to find the body. When she was last in control of the body, she was a ghost. Or the walking dead. No one was home.

Most people think of me as a decent person. I would take a bullet for most people on earth.

But my therapist has learned a new side to me. She has learned I am not such a good person after all.

I abandoned a little girl who had no life in front of her because of the mental damage done to her from years of unthinkable child abuse.

My therapist thinks I should have saved her. She thinks people don’t get ruined beyond repair. I know this little girl, and there is no repairing the damage done to her mind, body, and soul.

She wanders the planet lost and broken. She does not seek to understand. She is way beyond that. At some point, it just doesn’t matter.

She reached a point of no return, which happens to those who suffer ungodly acts like she did.

She does not understand the complexity of the system of people living in her body. Not sure she will care as I think she doesn’t care about anything.

Yet, my therapist thinks I should embrace her and care for her. It sounds so lovely, doesn’t it? Except for the fact that it will kill me and every part living in this body.

We survived horror, and have only lived this long because that little girl stayed lost in our internal la-la land.

If she makes her way to us, and she is getting closer, I have no doubt we will all die.

She had the unfortunate burden of taking the brunt of the everyday trauma we experienced. She died so we could live. Yet, somehow, her pulse still beats, though her mind runs close to flatline.

I have seen her and felt her from time-to-time over the years. I have always known she was still lost and damaged and hidden within.

I felt her close by today. I could see her. If she truly comes to me, and it is entirely up to her, her pain will overwhelm and kill me.

So, for a change, I am not the strong one. I am afraid. I am afraid she will become me, and I have already seen what it has done to her. I am no stronger than her.

Complex trauma, the gift that keeps on giving.

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

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.

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?