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.

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.

Father’s Day 2018

In years past, I celebrated this day with you. I chose to remember only the good I thought I knew about you.

This year it feels as if it is just another day. Another holiday that I don’t recognize.

If I let myself, I could get angry and hurt thinking about your role as my father.

As much good as you did for me, you failed me in so many more significant ways.

Your inability to love me, or choice to not love me, was the cruelest thing you could have done to me. What kind of father refuses to tell his daughter he loves her? As a parent myself, I can’t even begin to understand your actions and lack of love for me. No child deserves a parent who chooses not to love her.

Your decision to not protect me from all forms of child abuse cannot be understood or forgiven. No decent human being stands by an ignores his daughter’s pleas for help. I know you knew all about what was going on, and it hurts me so badly that you chose Mom and her sickness over me.

I deserved to have a father who loved me, protected me, and saw my self worth. You were not him, so this year I will not pretend to honor you on Father’s Day.

I pray that God has made you answer for the sins you perpetrated against me.

I deserved better. I know this, and you can’t take it from me.

Hiding from my truth

I was getting too close to acknowledging the intense pain of my childhood abuse. It was coming for me. I got really scared.

As someone with Dissociative Identity Disorder, I managed to dissociate it from my awareness, and eventually switch to an Identity that doesn’t experience abuse and lives in the here and now.

My system is mad that this Identity went to therapy this week and basically “wasted” the session by talking about mostly nothing.

Our experience seems normal on the outside. We are taking care of the kids and participating in life to some degree.

Our memory is still severely impaired. My son asked me my neighbor’s name, who I know well, and I couldn’t remember it. So, so frustrating.

I don’t know how long we can hold out in this safer position. I feel sadness and suicide creeping around nearby tonight.

I read an article about Designer Kate Spade’s suicide at age 55, and found myself jealous. She left a note to her 13 year old daughter telling the daughter it wasn’t her fault. My children have always kept me from doing it.

I have a mostly good life, yet I selfishly want to end it. What is wrong with me besides the obvious?

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