Doing my best to manage my C-PTSD and DID while navigating a sick child

My son has been diagnosed with a serious neurological disorder called PANS, which explains the symptoms we have been seeing in him for years. Please take a little bit of your time and watch the documentary “My Kid is Not Crazy” on Vemio to learn more about PANS.

I have found that his diagnosis and the related experiences I have had since then has kept me in a constant fight-or-flight mode that I can’t pull out of for longer than an hour, and this has been going on for weeks. I’m exhausted.

My own complex PTSD from my severe childhood abuse has been activated in more ways than I even comprehend at the moment. I just know I am functioning in a state of chaos and fight/flight.

My Dissociative Identity Disorder is not helping as I have accidentally injured myself these past couple of weeks because I am so distracted by the conversations happening in my head.

I have done my best to hold my DID in check, but as I am nearing exhaustion, it is getting more difficult. Arguments between parts. Large chunks of time missing. New parts surfacing who are under significant distress. Parts worried for us, worried for my son.

And then there is this need for me to save my son. Not uncommon for any parent facing this situation, but feeling really out of control due to my trauma background. I really cannot stop myself from constantly researching, talking to professionals, going to appointments, and talking to other parents who are in similar crisis.

The ironic thing is that parents of children with PANS/PANDAS typically develop PTSD as a result of going through this nightmare with our kids. This I recognize in my fellow PANS/PANDAS parents, and do my best to help.

I know I need to find the balance between taking care of myself and taking care of my son, but I feel so triggered by the entire situation I really feel unable to stop.

As a child no one made any attempt to help me, but by God I will do everything possible to help my son. This logic is driving my being.

The similarities between my trauma and this situation are endless, but my mind is not clear enough to really dive into that now.

Though I know I am doing so much good for my son by searching for answers, I also recognize as a parent this is the first time I have felt my diagnoses significantly impact my ability to maintain stability and feel solid as a parent. Though my kids don’t notice, I do, and it worries me as I can’t stop myself from fight/flight mode and all that entails.

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.

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

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.

Missing memories

I am missing the memories of most of my childhood before age 12. What I can remember is about 90% traumatic memories. I know I probably had more than 10% of my childhood being good memories, but I don’t have them.

When I think back on everything I can remember from my childhood, I was always feeling fearful, even in moments where it doesn’t seem like there should be fear for any reason.

I can remember 3 memories when I was in kindergarten.

The first is remembering that the best thing about kindergarten was that on “your day,” you got to go out in the hall and finger-paint. I know it was a highlight for me, but at the same time I feel intense fear thinking about the memory, and the scariness of the hall I was in.

The second memory was when one of my best friends came to school without underwear on while she was wearing a dress. I remember how mortified I was for her, and I was fearful because I knew it had something to do with the community we lived in together.

The third thing I can remember was being in the kindergarten teacher’s office area with her and another teacher doing a lice check on me. I gathered from their conversation it was not the first time they had me back there for a lice check. I remember them being sure I had lice and stumped when they couldn’t find any. I imagine the lice check was because I was dirty and unkempt. It was a very shaming experience, and again I felt fearful.

For the next 5 years at school, I can only remember 3 or 4 memories, and all of those are very scary and traumatic.

When I turned 12, my parents had quit drinking and moved our family away from the community we grew up in, and we literally became new people who had pretend normal backgrounds. There was never any mention or recognition of the past.

For whatever reason, I didn’t think anything of it at the time. In fact, I didn’t think anything of it until a therapist of mine some 38 years later pointed out how odd it was that my family had done that. I just shrugged it off because I never had the expectation that my childhood and family should make sense.

As a very grown adult, it is super frustrating to not have memories of my childhood and a lot of my adult life. Even though my adult life has not been terribly traumatic by my childhood standards, I still can’t remember things all the time.

The answer to this problem as I have come to believe is that because parts of me did not developmentally integrate when I was in childhood, I need to integrate us into one as an adult. Or, at the very least get parts of me who are stuck living in past trauma into the present.

To accomplish integration or removing active trauma from our head, we have to remember and process some of the memories. This is a difficult task for someone who can’t remember as much as I do.

I have been pushing my system for memories for a while now. I gamed my system and forced the process. As a result, I recently had some new memories come in rapid fire succession.

The memories I had before these new memories were horrific, so I wasn’t particularly worried as I honestly felt like things couldn’t be much worse. I was wrong.

There was a reason those memories were being kept from me. It has been almost a month since they first came up, and they have ruined me. I can’t seem to pull out of this constant suicidal crisis for longer than 10 minutes.

The new memories have shook me to the core. It has made it so I am not who I thought I was. A parent who I thought loved me and cared for me was not that at all.

It leaves me feeling like I was truly nothing to no one growing up. No one.

It is a hard pill to swallow.

I got what I wanted. I forced memories to come that probably should have never come.

I honestly don’t know if I will survive this suicidal crisis I am in. Everyday I just barely scrape by.

I am not sure I want to exist with this new sense of my identity. I wish I could just shake it off and go on with my ok adult life. But, I can’t let go of my past, and don’t know if I ever will. And if I never let go, living this haunted life until the end is an awful existence.

I don’t know if anyone understands what it feels like to have this haunting day-in-and-out.

It is like living in sheer terror everyday. Who the hell wants that?

Lacking anger, shame and depression prevail

Today, I feel no anger toward the many people who have abused me throughout life.

I know it gets complicated when it is your family, and sometimes we do weird shit to protect false ideas about our families.

But, I don’t even feel anger toward the strangers or people who mean nothing to me.

I have to think it is more about feeling anger than it is protecting the people. Maybe I am protecting myself from this anger?

It is weird to me because I have no trouble getting angry about things that happen in current day. I don’t like to hold onto anger because I think it creates toxicity in oneself to not let it go, but I do feel it is healthy to breathe anger into the situations or people that deserve our anger.

I think about my past, the people who hurt me, and I think I should feel anger toward those people who have ruined so much of my life. Internally, I feel and hear nothing. Crickets. Paralysis.

I have heard unexpressed anger turns into depression. I have tons of depression….

Living in a DID system can make the idea of trying to reach the anger feel impossible. It is kept far away from me for some reason.

Though I think I can handle the anger because my anger doesn’t scare me today, I have to believe there is some internal wisdom protecting me from this anger.

Or, maybe it is really just fear. Maybe I only think I am good with anger, and I am unknowingly terrified of the anger that must exist somewhere within me.

Maybe I don’t feel as though I deserve to be angry?

I am very in touch with my shame today, which means I feel as though I or we are bad.

After decades have gone by, I am still trying to control the abusive situations by believing they happened because I am inherently bad. I still struggle to fix this “bad” that exists within me.

When you grow up with extreme abuse and more perpetrators than you can name, it is hard not to believe it is your fault. You are the common denominator. Perpetrators even found me in adulthood, which is even harder to explain to myself.

I think of myself in terms of energy sometimes. I think of that child who attracted perpetrators. I think she must have had an energy about her that perpetrators could pick up on.

Is it wrong to be angry with yourself for putting out this energy into the world?

I think of my own daughter. I would definitely not blame her if perpetrators came into contact with her.

If she was sitting on a man’s lap and he got an erection, I would grab her off his lap and shove that man down to the ground. It would not be her fault, and I would be there to protect her.

So, why don’t I give myself the same treatment? Mostly because my parents did not value me enough to keep me safe from people and themselves.

The message they carved into my brain is that I don’t matter, and am only useful to them for their sick pleasures of torture and sex.

It’s challenging to build a healthy self after being raised with those messages.

It is incomprehensible to me how parents can treat a child the way I was treated.

I want to say it is because they were so sick, but I really still struggle every day with the idea that there is something so inherently wrong with me from the day that I was born that I deserved this.

I know I will never heal holding onto these beliefs, but how does one let go of what feels so much like their truth?