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

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?

My Brain After Trauma

Gehirn - Schwingungen 3

Some days, I like to forget about my horrific abuse history and think I am just another ordinary person trying to get by in this world. After all, I can get distracted by the things in life the same way my presumably ordinary neighbors can.

I appreciate the moments when nobody knows my big secret about having Dissociative Identity Disorder (DID) and Complex Post Traumatic Stress Disorder (PTSD), and that people think I am just another neurotic person, similar to themselves. I am a master at hiding my symptoms.

Then there are the moments when the truth slaps me in the face so hard I can barely stand up again.

This week I met with a doctor to go over my results of some cognitive testing and my QEEG, or brain map. I am very interested in alternative or nontraditional therapies in treating my DID, so I am working with a new “Brain Doctor,” in addition to my traditional talk therapy.

I have always known I am sometimes cognitively impaired, and certainly sometimes operating from a “trauma brain.”

Though I had neurofeedback this past Summer for about 15 sessions, the providers I used never shared what was going on with my brain—they shared positive statements about the neurofeedback results they were seeing. Never the baseline.

In my discussion this past week with the new doctor, it was explained as sensitively as it could be, that I am extremely cognitively impaired and my brain waves look like a badass, not good, electrical storm.

I was told calmly and slowly they have seen worse, but it is pretty bad. The doctor is a genuinely good person and an optimist, and believes she can help repair much of my brain problems, even as severe as they are.

Because I had my son go through this process for a different reason, I knew what the brain pictures were supposed to look like. You want the brain to appear white on the paper.

I was completely overwhelmed by the amount of color on every one of my brain images.

I thought I was really calm during the actual test being done, but the results make it look like I am an anxious wreck. I guess my body has simply become used to the free-flowing anxiety from my PTSD, and I only recognize it when it is over the top.

I showed my brain in my best state. Can you imagine if I showed it when I am doing really poorly?

PTSDbrain

Two years ago, I was working in a highly demanding job in which I was quite successful and made a lot of money. Today, I am not working at all.

The one sentence from the doctor that stood out to me was when she gently said “I can see why you are not working, your executive functioning is extremely low.”

A dagger in my heart.

The scribble scrabble brain waves on the page were not something I can deny. I don’t need to be a doctor to know it isn’t normal looking at all.

The mental anguish I feel on a regular basis has just been verified as totally real, and it is as bad as it feels. It is not hidden or made up. Through this QEEG, I let people see the mess of a brain I have. Lots of internal conflict about doing so.

“You’re such an idiot, why did you let people see what it looks like inside.”

My trauma has without a doubt destroyed the way my brain is supposed to function. Maybe I shouldn’t say destroy because my favorite word is all the buzz these days—“neuroplasticity” (when the brain can heal itself), there is hope through neurofeedback and other brain therapies to repair much of the damage.

I always thought I wanted to see what my “DID brain” looked like. At this point, I am feeling it was a mistake, but hopefully some day I will change my mind about it.

It is an overwhelming picture of myself. And, I actually feel shame about my brain. That’s a new one.

This morning I was looking at a job announcement that came to my email, and what followed were the voices in my brain telling me I can’t possibly work given the extremely low level of executive functioning I am at (confirmed by these test results). Sigh.

I always knew the abusers from my past ruined my brain, but I secretly didn’t want it to be true. Parts of me appear to be so severely abused. I didn’t want to believe they could be as badly abused as they felt and claimed. I realize now how much I was clinging to the hope that not all of my story was true.

It is hard to hide from the serious consequences of the severe abuse I endured throughout my life. It is sad when the ability to deny the consequences is gone.

 

The Debilitating Amnesia that goes with my Dissociative Identity Disorder

Confusion

I live with debilitating amnesia every day. I can’t remember what I did hours ago, and definitely lose my place in time, like not knowing what day (or year) it is, and whether I did something yesterday or it was really 3 days prior. It is a maddening aspect of my Dissociative Identity Disorder (DID) that I try to compensate for so I can function in the world and people won’t suggest I get locked away.

Since I have DID, most people believe that one with DID can’t remember because they have switched into another part and “lost time” as we like to call it in the DID world. This is not true for me. I have loads and loads of trouble remembering things that happen when I know I was present for them (not switched into another part).

Some people have theories about how my DID influences my amnesia, but at the end of the day they are just theories, and I have no idea whether they are true or not. I have had DID therapists suggest at times I have “cognitive problems” because they couldn’t make out why I have this severe amnesia and still seem to be present. The way I experience amnesia is definitely not the way it is written about in text books about DID.

Some times I feel completely lost in the world because my amnesia is so bad. It does fluctuate on how severe it is. Sometimes I can’t even remember the names of people I have known for years on one day, and then the next I have no trouble remembering names. I use Google all the time to give me clues to things I need to remember. I am betting Google didn’t realize this use of its product.

I don’t believe it is a cognitive problem because there are days when my entire brain is sharp as a tack and I can remember everything. This confuses the therapists even more.

My best friend with DID shares a similar plight. Sometimes it is funny to watch her experience the same struggle with her memory, but other times it is scary to realize how much we have to hide and develop strategies to “pass” in this world as functioning. Sometimes we both just laugh and laugh because neither of us can remember what we talked about yesterday that was so important to the both of us.

I have learned that these missing current day memories are in my brain, I just need  prompts for me to be able to retrieve them. Often times if someone starts giving me some clues, I can piece it together and voila, I can actually pull out the complete memory. If I don’t have clues, I might never be able to access it, or even know what I am looking for.

In some ways, people would consider me high functioning DID at this moment because the cracks in my mind are mostly hidden. People think I am doing ok because I am getting out bed, making all my appointments, not feeling depressed or overwhelmingly anxious, taking care of my kids, and in general, participating in life.

What lies beneath that high functioning is a stressed out system trying to maintain that appearance and not get “caught” by someone for how little I can remember. With the amnesia comes simple things like remembering to eat or go to the bathroom. The messages that should come from my body to my brain somehow get hijacked, which is why I often only end up eating one time a day.

I think because I struggle so much with my memory, I have been a strong advocate beginning this year to healing the mind/body/spirit as an overall approach to DID healing. I simply don’t believe talk therapy is enough for all the faulty wiring going on in my brain, and this is not talking bad about talk therapy or myself, but more of the truth of all the baggage that goes along with exposure to severe trauma as a child.

I did about 15 sessions of neurofeedback recently, and I believe this has helped my brain function better considerably. I am less anxious, less depressed, and feel mentally sharper. But still, I struggle with my memory every day to varying degrees.

I will continue doing therapies that are designed to help my “trauma brain,” so that I can function better. Even though this will not be the cure to my DID, it definitely makes it easier for me to function from day-to-day, and thus makes the recovery work for my DID more stable.

For some reason people don’t talk enough about the amnesia that goes along with DID. For me and many others, it is really one of the most disabling aspects of having DID. It would make for a boring Hollywood movie, I suppose. But outside of Hollywood, we should raise awareness about this crippling amnesia so that we can get clinicians and researchers working on getting a better understanding of it, and hopefully with that understanding, more therapies to address the problem.

My amnesia is one of the reasons I would like to integrate my parts. I feel like if all the parts of me were together as one, this missing or lost information wouldn’t happen. It’s just my theory, and why I am working so hard to heal my parts.