Preverbal Trauma

Today, I wrote in a Facebook group about preverbal trauma. I know for a fact that I endured a lot that could have caused PTSD from birth on. I was born prematurely, spent the first three months of my life in hospital and was hospitalized several more times before the age of five.

About seven or eight years ago, I started experiencing body memories that I immediately associated with a medical emergency that I endured at age four. At the time, my trachea closed up and I as a result had difficulty breathing. I never completely repressed that memory, always knew that it’s something that actually did happen.

So I wonder if I made said association because it makes more sense than connecting the body memory to preverbal trauma. I mean, preverbal trauma is very controversial, because people do not form that clear memories until the age of three. That doesn’t mean people cannot be affected by preverbal trauma. It just means the memory is hard to recover.

I have alters. About six years ago, an alter emerged that is constantly curled up in a fetal position. We don’t know more about her. A seven-year-old alter who also emerged around that same time talks about that alter as a baby in the incubator. Now of course babies in incubators are not in the fetal position, so yeah.

Still, it all makes me wonder whether I’m making all this trauma stuff up. I mean, yes, I was born prematurely. Yes, I spent three months in hospital and had repeated re-admissions before the age of five. But my parents say that until age seven, I was completely fine and carefree. I mean, it’s not like everyone who endured trauma develops PTSD. So could it be I’m just making this whole preverbal trauma thing up?

In a preemie parent support group, I asked whether anyone has experience with their child getting EMDR for medical trauma. I have always wondered whether EMDR could help me. It was recommended when I had just been diagnosed with dissociative identity disorder in 2010. Then I heard it’s not recommended unless you’re very stable otherwise. Well, the consultant I talked with on Monday said that’s no longer the case. So maybe I could benefit from it. Several parents responded about reading their child a “life story” about their birth and hospital stay while the psychologist did the EMDR. Since my parents aren’t very supportive, I cannot ask them to help me with this, but I could create my own life story based on what my alers tell me.

Five Years

Today marks five years since our DID diagnosis got removed and changed to BPD. I’m not sure how to feel about it. I mean, that diagnosis was most likely incorrect but so is the BPD (which later got downgraded to BPD traits, which I do think we have but then again who doesn’t?). I mean, we rarely if ever experience amnesia and don’t go around disclosing ourselves when it’s not safe, but we do clearly exist as multiple identities.

Besides, the therapist who diagnosed us with DID at least took us more seriously than any before or after her (except for maybe our current psychiatrist, whom we just came out to three weeks ago). She didn’t allow us to be out with the nursing staff, which was okay’ish with us, but she did allow all of us to talk to her and didn’t try to fit us in a therapeutic box. The therapist who changed our diagnosis to BPD did, mislabeling Jane as a “punitive parent” and telling her to go away.

We at one point insisted on getting formal testing for DID. The therapist administered the SCID-D (a structured interview for diagnosing dissociation) to us but never finished the report. I wish she had even if it showed we’re fake. I mean, we have a right to information, don’t we? She also never responded to our E-mail, once our diagnosis was changed, asking her whether she’d ever suspected BPD in us.

I feel really odd now. I don’t know where we’re headed with regards to our mental health treatment. It’s all so scary. What if we’re really all imaginary? Since it’s unlikely we’ll ever be diagnosed with a dissociative disorder or get related trauma treatment again, will we ever learn to not exist?

A while back, someone asked in an FB group what happens to those misdiagnosed with DID after they get de-diagnosed. Whether their parts vanish. I don’t know really what I hope happens to us. I mean, we’ve tried to hide for a long time after our diagnosis got changed, but it was unsuccessful. We’ve tried to identify with the natural/endogenic multiple community before, since we felt not having a diagnosis meant we shouldn’t intrude upon the DID community. That was unsuccessful too. Does the fact that we can’t hide successfully for a long time mean we’re real after all, or does it mean I’m just terribly stubborn? I initially wrote “we” instead of “I”, but of course if we’re fake, we are not we anymore and never have been.

#WeekendCoffeeShare (September 8, 2018)

This week, I’m once again joining in with Weekend Coffee Share. On the surface, I don’t have much to write about, but I’ll try anyway.

If we were having coffee, I’d ask you how you have been. It’s sometimes hard for me to remember this, but when I’m feeling like I’m now, I’d genuinely much rather hear about your day than share about mine. Since I don’t know who will be joining me for coffee, as this is just a writing exercise, this is rather fruitless though.

If we were having coffee, I’d try to share how off I’ve been feeling lately. Most people notice right away, but it’s hard for me to put my finger onto what is going on. I guess I may be in a prolonged freeze mode. This is one of Pete Walker’s four types of trauma responses and it describes a state of dissociation. I’m so disconnected from myself that I can’t even tell who I am right now. I mean, yes, I respond to the name given to me at birth, but I hardly connect that name, or any of y alters’ names, to my current experience.

I don’t know what triggered it. I’m not having flashbacks. I’m not even having memories that aren’t full-blown visual flashbacks. Rather, I retreat into my own inner world with a book. Currently, this is Where Has Mummy Gone? by Cathy Glass. This is a very sad foster care memoir. I know I’m supposed to feel sympathy for the child who is the main character in this memoir and on some level I do, but it’s all very distant.

If we were having coffee, I’d then chatter on about random happenings. I’d share that I did finally go on the elliptical yesterday evening after not having been on it in over a week. I’d share that we had pizza for dinner yesterday. It was salami day or so I’ve heard, so I had a delicious salami pizza.

If we were having coffee, ‘d tell you that yesterday marked 130 years since the first incubator was used for a baby. My mother posted that on my timeline on Facebook last night. Since I was born prematurely and spent time in an incubator myself, this is rather intriguing to me.

If we were having coffee, I’d try to round up the conversation then, because I feel my shoulder hurting badly, so I want to do some exercise.

How is your weekend going so far?

Years From Now

As regular readers of this blog know, I’m a fan of journal writing prompts. Today, I found a self-exploration journal on Amazon and, since it’s free, I didn’t hesitate to download it. It’s called The Self-Exploration Journal: 90 Days of Writing, Discovery and Reflection. The first prompt is to write down why you want to embark on this journey of self-discovery. I’m not even sure. I mean, I just write for the sake of writing. I don’t even commonly reread my blog entries, though I did often reread my diary entries when I still faithfully kept an offline diary in the first three years of secondary school. I loved that. Maybe I should make a habit out of rereading some of my blog entries too. But since I currently don’t, I don’t even know that blogging is going to help me discover myself.

I mean, who am I, myself? I see myself in so many fragmented aspects that I’m not even sure who “Astrid” is. All these aspects, parts or identities usually listen to that name, but even as I write this, I don’t feel “whole”. I’m just a part among parts that somehow, in an abstract kind of reality, make up the mind belonging to one body. We have just two hands, both of which we currently use for typing up this journal/blog entry. Which, I might say, is going nowhere.

The second question in the 90-day series asks me to write about how I want to look back on my life ten years from now. Well, I honestly have no idea. Four years ago, I wrote a lettr to my 38-year-old self. I think I may reread it today. Already nearly half of those ten years have passed, but I have no clue at the time what I dreamed about. I mean, three years ago, I did a post as if I was 79 already and looking back at the past fifty years. The only thing I remember that would-be-flashback including was that we’d still live in our current house. Now we’re not even three years on and my husband and I are already thinking of moving.

What does it say of me that I don’t envision that much progress even in fifty years? Does this lack of a truly progressive vision of the future impair my actual progress? Or is it the other way around? That I’ve learned not to expect positive change because the past taught me I’d always fail anyway?

The first time I did a “___ years from now” post was in September of 2006. A psychologist my staff were consulting had asked me where I saw myself in three yars. There were, or so I thought, two possible scenarios: one in which I lived successfully fully independently or with just a person reading my mail once a week and was at university and the other in which I needed substantial support. I explicitly wrote that this “black” scenario didn’t have to mean I needed 24-hour care, but that I needed support beyond that which is normal for a blind person.

Three years later, in September of 2009, I had almost two years in a psychiatric hospital behind my belt, of which I’d spent sixteen months on a locked ward. I wrote a flashback then and remarked kind of cynically that stuff couldn’t get much worse than they were now in three more years, or I’d have to be in a homeless shelter or prison. Then, I reasoned, I wouldn’t have Internet access so the whole wide world wouldn’t know. As it turned out, in September of 2012, I was still on the same ward I was on in 2009.

I finally left the hospital in 2017 and live fairly independently with my husband. I guess at this point, I’m pretty content with my life. That doesn’t mean I have absolutley no dreams, but I must admit I don’t generally see these as realistic indeed.

Weekly Gratitude List (August 31, 2018) #TToT

It gets boring, but time definitely flies. Tomorrow it’ll be September already. Fortunately, the good weather isn’t fully over yet, as they’re saying Sunday and Monday it’ll be sunny and warm once again. I love that.

Since it’s Friday again, it’s time for my weekly gratitude list. I notice these have become somewhat of a chore, but I hope that by continuing with them, I’ll take care to appreciate the little things in life more.

1. The takeout roti my father-in-law bought for my husband and me on Sunday. Normally, we go for Chinese, which gets boring. This was a lot more delicious.

2. Several nice walks this week. I once again went for the long walk at day activities on Monday and also went for a walk with my support worker on Thursday morning.

3. Being nominated for my first blogging award on this blog. I was nomiated for one on my other blog about a year ago, but like I’ve said, I took that blog too seriously to do blog awards. I genuinely appreciated it this time.

4. Swimming on Tuesday. On MOnday, my staff at day activities decided to invite me to participate in the swimmin group, initially just for that week. It was fabulous! I really hope I can continue to go swimming, but a volunteer already offered to watch me if there are not as many staff people.

5. Being supported by a lot of people in the multiple community. I recently joined a group for those who don’t have full-blown dissociative identity disorder, because they either have alters but minimal amnesia (me) or have amnesia but their alters are not as formed. I don’t like labeling myself that much, but I do it for the sake of finding support. After all, when you’re multiple, it’s either trauma-based or endogenic (natural) and we’re definitely not endogenic. It feels weird to join groups for DID or other dissociative disorders when we don’t have that diagnosis anymore and are not really looking for it either, but we need the support somehow. Thankfully, the people in the dissociation group are very nice.

6. Starting back into adaptive horseback ridiing after the summer break. It was absolutely so relaxing. My horse, Angie, was more obedient and less lazy than she usually is.

7. Eating some fish this afternoon. Usually when my mother-in-law takes me to horseback riding and the pharmacy on every-other-Fridays, we go to the fish stand that’s near the pharmacy. They however were gone for a few weeks. Their fish isn’t great, but this time it was quite tasty and above all it was hot.

As usual, I’m linking up with Ten Things of Thankful.

Quote of the Day (August 30, 2018): Cultivating Mindfulness

“The best way to capture moments is to pay attention. This is how we cultivate mindfulness. Mindfulness means being awake. It means knowing what you are doing.” – Jon Kabat-Zinn

I had another session of dialectical behavior therapy with my nurse practitioner today. In it, we discussed the skill of participation, which essentially boils down to doing something with attention without constantly being aware of the fact that you’re doing it. This seems pretty contradictory to me, because how do you do something mindfully without constantly being aware of it?

In this repsect, this quote speaks to me. It describes mindfulness as a way of knowing what we’re doing and paying attention to it.

It also seems that this may be what Pete Walker means when he describes the flight-freeze continuum of healthy relating to self in his book Complex PTSD: From Surviving to Thriving. He says that the healthy middle between freeze and flight is the middle between doing and being. Freeze then is the state of constantly dissociating, daydreaming away time, while flight is the state of constant doing stuff, working time away. I tend to fall closer to the freeze end, while other people might lean closer to the flight end. Whenever I’m upset, I retreat into my own world. Someone who is a flight type would more go and do stuff, such as housekeeping, work, etc.

Kabat-Zinn in his quote says that mindfulness means being awake and knowing what we’re doing. It means not mindlessly staying busy to avoid hard feelings (flight), nor means it being disconnected from one’s surroundings (and oneself) to avoid hard feelings (freeze).

Now I seem to understand where the flight-freeze continuum also comes in handy in my DBT skills training. Flight then describes rational mind, not feeling anything because we’re busy doing (work, housekeeping, etc.). Freeze describes emotional mind, being stuck in the inability to do something about our experience. The middle ground in DBT is called Wise Mind.

Body Image

Once again, carol anne inspired me to write this post with her question of the day. She asks whether we are happy with our looks. In this post, I’m going to share about my body image struggles.

If I have to be truly honest, I have no idea whether I’m happy with the way I look. The reason may be a bit baffling: I have no idea what I look like really. I after all haven’t been able to see myself in the mirror in roughly 20 years.

I do know, as a result of having in the past seen myself, that I have dark hair. However, when my husband commented recently on the fact that I’d gotten a grey hair, I had no idea what it’d look like. I have been able to see my father with a lot of grey hair, but that’s still different.

Of course, unlike what sighted people commonly believe, blind people are not immune to body image issues though. Carol anne is blind. So am I. Both of us do struggle with body image. After all, even though I can’t see it, I can feel that I have a few extra pounds and that my body fat is mainly concentrated on my belly. I definitely am not happy with that.

I also may not be able to see my grey hairs, but I’m definitely able to rationalize that my body is growing older. This brings with it its own kind of body image issues, as some of my alters are younger than me and as a result have not adjusted to an aging body. The most striking example is our 13-year-old Agnes, who is still adjusting to the fact that we have breasts. She has disordered eating tendencies and at one point was active on pro-ana sites. There, someone once asked whether we’d want our breasts to go away if we’d become extremely thin. Most people said no, but Agnes replied with a resounding yes.

Adjusting to an aging body also affects our attitude towards the fact that we’re overweight. In a similar but different way that Agnes wants our breasts gone, some of us actually think that we’re not as heavy as we are. This makes committing to weight loss harder.

A Profound Psychiatrist’s Appointment

So we had a psychiatrist’s appointment today. Originally, our psychiatrist had asked to see our husband too, but he didn’t want to come. I was a little late due to transportation issues, but we still covered many profound topics.

First, we went into why our husband didn’t want to come to the appointment with us. The psychiatrist was careful not to let me speak through her for my husband or vice versa. I liked this.

Then we went into our treatment goals and why we’re going extremely slowly with the dialectical behavior therapy program we’re following. Our nurse practitioner had already explained that he’d like us to fully understand the concepts before moving on to the next chapter, so that’s why in three months we’ve not gotten beyond the second chapter, which covers core mindfulness skills. There are 24 chapters in the course. Normally, BPD clients in group therapy do one chapter for each session and so they can finish the course within six months.

I started to explain how I find it incredibly hard to apply the skills into my daily life. Like, there’s one skill called observe, which is intended for taking a little distance (without dissociating) from an overwhelming emotion. For example, you can start by observing what you feel or think without describing it. I thought an example of this distance-taking was to do arithmetic in your head. My psychiatrist says that’s a step too far, as we first need to observe that we’re experiencing an overwhelming emotion (or physical sensation). Then we can take a step back and decide what to do with it. I mentioned the physical sensation of needing to use the toilet, which commonly overwhelms me to the point where I can no longer act fully functionally. (Because I am blind, in most places, going to the loo requires me to ask someone to show me where it is, which requires communication we don’t have access to when overwhelmed.) The psychiatrist told me that, if I do observe this feeling on time, I can still decide what to do with it out of my Wise Mind (DBT jargon for the right combo of feeling and thinking).

Then we went on to discuss the “pieces”, as we call the alters qwhen our mental health team are around (as to avoid self-diagnosing). Our psychiatrist asked us to describe some experiences relating to them, like how many are there (around 25) and what happens when we switch. She then asked whether all of us could agree that there is just one body, whether we like it or not. This was a truly profound question. First, she had us clap our hands and asked whether any of us are still convinced they could use those hands to cover their ears and not listen to what she had to say. That didn’t work, as we still dissociated a little. Then, she held our right hand and asked the same, repeatedly. This brought on a ton of emotional reactions, mostly wonder. We couldn’t say much, but later, when in the taxi back home, some of us were like: “I may not be able to cover my ears w ith those hands, but I can still run from that psychiatrist. Oh no, I can’t, as she’s holding my hand.”

We also went into how to do treatment from here on. We sort of sarcastically said maybe it’s going to take us five years. Our psychiatrist said that, if we truly want to make this work, to count on it that it’ll take that long indeed. I’m not sure how we feel about this. I mean, when we first started DBT a year ago, we were told by this same psychiatrist to do one chapter every two weeks and finish in a year. Of course, we found out pretty soon that this wasn’t working and a lot of other issues got in the way, so we restarted about three months ago.

We’ll meet with our psychiatrist and nurse practitioner together someday in September. Our psychiatrist will then explain a little about how to go from here and then we can hopefully decide whether we want this or not.

At the end, the psychiatrist shook our hand and said: “Now I’m giving you (plural) a hand and say goodbye.” That was such a validating experience. It was good to be validated like we’re multiple minds but also contained in that we only have this one body. As a side note, neither of us ever mentioned DID or dissociation. We think that’s a good thing, in that we don’t need to conform (yet) to any diagnostic box. After all, we don’t “want” to be DID, but we are multiple whether we want it or not.

How to Proceed in Our Mental Health Treatment

So we met with our nurse practitioner for dialectical behavior therapy again. This was our first session since I started considering dropping out. I am still unsure as to what I want, but I’m pretty sure that just working the manual in a very structured way isn’t working for me. I also wondered out loud how long this treatment is going to take and whether I think it’s worth it. With regards to this, my nurse practitioner explained that behavor change takes a long time because we learned our patterns from babyhood on.

We started discussing the “pieces”, as we call the alters when talking with our treatment team. My nurse practitioner said he wants to discuss this with the psychiatrist. I doubt much will come out of that, as the psychiatrist keeps the status quo as to whether we’re dissociative or not. She most likely believes we’re not, but wants to bring it diplomatically.

We went some into our original trauma, which involves my parents not having been given a choice as to whether I should be actively treated after my premature birth. They weren’t sure themselves and were told the doctors were keeping me alive and not to interfere or they’d lose parental rights.

My nurse practitioner also mentioned a book and movie about a person with multiple personalities (possibly Sybil). I am pretty sure my psychiatrist is going to stomp that association right out of him, as like I said, she probably doesn’t believe I’m dissociative.

After leaving the session, we were pretty unquiet. Katinka tried taking over from Clarissa, who usually does DBT, to get back into daily functioning mode. That was only partly successful. Our support coordinator arrived ten minutes after we got home and we were still pretty unquiet. We were able to calm down eventually and enjoy a walk.

In the evening, when our husband got home, we discussed the session with him and asked him to come to our next psychiatrist’s appointment on Tuesday. The original reason the psychiatrist had asked him to come is that she’d gotten the impression that we have relationship struggles. That upset my husband, of course. I finally managed to say that I want to discuss where to go from here regarding treatment.

There are several options. I could proceed as I have until now, which seems like the least productive option. I could stop going to therapy altogether or just stay with the team for med management and the ability to call someone when not feeling well. Or I could do more supportive therapy focusing on my emotional pain. This then could again be focused on several aspects of my life and it could or could not involve the “pieces”. I think that last option sounds best to me, but since it wouldn’t likely be based on a protocol such as DBT, I don’t think my psychiatrist would accept this. A fourth option, which I just realized when talking to someone on Facebook, is staying with my current team for med management and crisis support and going to another therapist for formal psychotherapy. I don’t think that’s a realistic otpion though.

She Walked Through Fire

She walked through fire but was not burned by it. Her body did not show a sign of the path she’d been traveling through the burning forest or her life. She did not feel pain. She had all feeling neatly folded away in the dirty laundry drawer in her mind. Over the years, walking through a little too many fires, she’d grown accustomed to not showing their effects. She was not burned – at least, not visibly so.

A few months ago, I read up on somatoform dissociation. It is where there’s a disconnect between your body and your mind and it shows itself physically, as opposed to psychologically. Psychological dissociation is a distortion in memory, sense of self or identity. Somatoform dissociation manifests itself in distortions to your physical experience. For example, you may not feel sensation in a particular body part for a while (not explained by the body part just having “fallen asleep”). Or you may have a strong aversion to a food or smell you normally like. You may even react differently to medications depending on your state of mind.

While it is unlikely that someone would not have physical burns from walking through an actual fire, the psychological equivalent describes perfectly what it is like to dissociate. In dissociation, you lock away the feelings or memories associated with a trauma into the unconscious. You walk through a psychological fire (experience a trauma) but don’t get burned – at least, not visibly so.

I once read in a women’s magazine about a person with dissociative identity disorder (DID). This woman’s doctor explained that everyone has a breaking point in life and this may be why people with DID may be able to hold it together for years after their early childhood trauma, but fall apart eventually. In other words, they lock away the pain and burns from walking through fire until a minor injury – hurting their index finger – tears open the horrible burn wounds. In my own case, I was fifteen when I first realized I dissociate, but 23 when I experienced this breaking point. I think the breaking point happened after I was attacked by a fellow patient on the resocialization unit of the psychiatric hospital. I wasn’t diagnosed with DID till more than a year later and that diagnosis has since been taken away, but the psychological burn wounds never disappeared.

This post is part of Reena’s Exploration Challenge #48.