DID: The ACE Study

A new and profoundly important paradigm for understanding overwhelming emotional pain has emerged over the last few years, with the potential to change the way we conceptualize human suffering across the whole spectrum of mental health difficulties. It is an evidence-based synthesis of findings from trauma studies, attachment theory and neuroscience, which offers new hope for recovery. It also presents a powerful challenge to the biomedical model of psychiatry in that it is based on scientific evidence that substantiates and attests to what many individuals with first-hand experience of mental health problems have always known — that the bad things that happen to you can drive you mad.

A New Paradigm for Understanding Severe Mental Distress

The CDC-Kaiser Permanente Adverse Childhood Experiences (ACE) Study revolutionizes the way we think about the body and mind.

The ACE Study settles the question of whether we are shaped by genetics or the environment: we are shaped by both.  Nature Versus Nurture: Where We Are in 2017

The ACE study proves that child abuse causes enduring neurological damage that can affect a person’s health and quality of life throughout the lifespan.

The body of a frightened child floods with hormones and prepares to fight, run, or die.

In less than an instant, the amygdala sends an alarm to the hippocampus, which tells the adrenal glands to release adrenaline.

Adrenaline increases heart rate and breathing, oxygen goes to the muscles and brain, which increases hearing and sharpens eyesight.

Adrenaline wears off and cortisol takes over; cortisol is a longer acting stress hormone designed keep the body alert.

Illustration from Harvard Medical School
Understanding The Stress Response, Harvard Medical School

If a child fears for his life, he may freeze and go numb.

For a prey animal in the wild, numbing is a blessing.

For abuse survivors, it means gaps in memory

During the fight, flight or freeze response the brain inhibits the prefrontal cortex.

The prefrontal cortex is responsible for retrieving memories. 

The memory is there but the brain can’t retrieve it.

A chronically abused child lives in fear which damages the structure and
functioning of a the brain. Harvard University

The toll of chronic fear on physical health includes:

  • Immune system dysfunction
  • Endocrine system dysfunction
  • Autonomic nervous system alterations
  • Sleep/wake cycle disruption
  • Eating disorders

The toll of chronic fear on emotional health includes

The Pyramid of effects of abuse on the lifecycle
Abuse Affects the Life-cycle

It takes nine months for the fetus to become a baby that can survive beyond
the womb.

Between birth and the age of two, we have no words; for the first ten years of our  lives, we are helplessly dependent on our parents and communities for our physical and psychological well being.

Child abuse is a betrayal of unconditional trust.

You don’t just ‘get over it’.

People with dissociative disorders report the highest occurrence of abuse and childhood neglect among all psychiatric disorders. This suggests dissociation is the ultimate reaction to significant trauma. Links between Trauma, PTSD, and Dissociative Disorders

A 2018 review found changes in the structure of the brain in people with DID. These changes are complex and  include decreased limbic activity, increased frontal lobe activity, and changes in communication between these two regions.

An illustration depicting a little boy glaring at his drunken mother, passed out on the floor
Child Abuse Lasts a Lifetime

DID is something done to you, like the rapes and daily beatings.

One must accept what happened and make peace with it.

Acceptance means seeing what might have been and grieving the loss.

Acceptance means letting go of the idea that I brought it on myself, that I am shameful and not good enough, and it means not letting the dismissive arrogance I sometimes encounter gnaw at my soul.

Acceptance means holding abusers accountable for the messes they make.

Acceptance means believing the abuse will end.

I am not completely there.

How do I accept the evil of child abuse when the abuse never ends?

For now, broken but better is the best I can do.

DID: When Everything is a Trigger

Get Your ACE Score

(C)Rob Goldstein 2019

‘Child Abuse Lasts Forever” (C) Rob Goldstein 2019

All other graphics were found online and are used here for educational purposes.

Mental Health: An Autobiography in Five Short Chapters for People with PTSD and CPTSD.

The “Autobiography in Five Short Chapters,” by Portia Nelson is a mainstay of 12 Step Programs.
It is primarily used as an allegory to describe the addictive process. i.e. the insanity of repeatedly and consciously making the same mistake with the hope of getting different results.
The “Autobiography” goes like this:
“I walk down the street.
There is a deep hole in the sidewalk.
I fall in.
I am lost… I am helpless.
It isn’t my fault.
It takes forever to find a way out.
I walk down the same street.
There is a deep hole in the sidewalk.
I pretend I don’t see it.
I fall in again.
I can’t believe I am in the same place.
But, it isn’t my fault.
It still takes me a long time to get out.
I walk down the same street.
There is a deep hole in the sidewalk.
I see it is there.
I still fall in. It’s a habit.
My eyes are open.
I know where I am.
It is my fault. I get out immediately.
I walk down the same street.
There is a deep hole in the sidewalk.
I walk around it.
I walk down another street.”
Portia Nelson, There’s a Hole in My Sidewalk: The Romance of Self-Discovery

I received my copy of “Autobiography in Five Short Chapters” in a clinical setting, as part of a treatment group for people with C-PTSD.

For me, that’s a problem. Here’s why:

In my experience, people with primary substance abuse disorders know they are in a hole, even in their denial. They not only know where the hole is, they know how they fell in, and they know the way out.

Our for profit medical system sees “behavioral” health and 12-Step Programs as a cheap alternative to providing the more expensive services required by people with mental illnesses.

Some people with severe mental illnesses have substance abuse disorders, but they are secondary to our illness, and to the artificially induced poverty, that forces us into slum housing and into the arms of aggressive drug dealers.

I did not fall into a hole.

I was placed in a hole as an infant.

Any attempt to crawl out that hole was met with violent beatings.

After she solemnly read the ‘Autobiography in Five Short Chapters’ to us, the therapist who was running the group asked us what we thought.

I raised my hand:

“What if we were stuffed into a hole before we knew we were alive?”

She had no answer.

Behaviorism has few answers for people who need intensive psychotherapy.

***

For those of us with mental illnesses related to childhood sexual assault and trauma, I offer this Autobiography in Five Short Chapters for People with PTSD and CPTSD.”


Chapter One
“I wake up and I am in a hole. I don’t know that I am in a hole. The hole forms the circumference of my world. I base my options in life on its width and depth. It is uncomfortable but the hole is all I know.
I feel constrained and helpless.
One day I look up and see that light enters the hole through an opening at the top.
My eyes are so dazzled I cover them.
***
Chapter Two:
I live in a hole in the sidewalk but I am not certain of this.
I try to pretend that It isn’t true but I see that there are edges at the top of the hole through which the Sun shines.
I decide to climb toward the light to look beyond the edge.
I climb to the top.
It takes a long time.
I see that beyond the hole is a vista that is more rich with possibility than anything I have ever imagined.
My fear is so profound I fall back into the hole where I know I am safe.
***
Chapter Three:
I live in a whole in the sidewalk, which is where I was placed as an infant.
I try to forget what I saw when I climbed toward the light and looked over the edge.  The hole feels small and cramped but the thought of leaving fills me with dread.
I try to pretend that I don’t know that I am stuck but pretending doesn’t work anymore.
I am furious.
Why am I in this hole?
 It isn’t my fault.
I contemplate climbing out
***
Chapter Four:
I live in a hole in the sidewalk. My world is in this hole yet I feel I must leave this tiny world for the larger one above: the real world.
I slowly climb to the top of the hole and slowly pull myself out.
I stand at the edge of the hole, terrified and uncertain of what to do next.
***
Chapter Five:
There is a hole in the sidewalk. I’ve spent my life in this hole and once believed  it was the entire World. I am terrified and want to throw myself back into the hole, but enter psychotherapy instead.
Rob Goldstein 2014 – 2019

Awards: The Disability Award

Melinda Sandor at Looking For The Light  blog nominated me for this award; she is a dedicated blogger and activist and was one of my first Featured Bloggers.

Melinda is also the driving force behind the blogging collective, Survivors Blog Here.

When I saw the name of the award my first thought was, ‘an award for being disabled?’ but based on the nominees it’s clearly an award for people who strive to transcend their disabilities and give meaning to the pain. It’s an honor to get this award. Thank you, Melinda.

The rules are to display the award badge, answer the questions, choose your own nominees, and develop your own set of questions. Melinda’s questions are so practical I’m going with hers.

Advances in Brain Imaging
Fig. 2. Example of reduced regional cerebral glucose metabolism in the anterior temporo-frontal cortices in a patient with dissociative amnesia.

Melinda’s Questions:

What was the first sign of your illness?

My first symptoms appeared when I was a child and found the name ‘Antonio’ scrawled in my schoolbooks. I was confused about my age, name and gender, which set me apart from the other children.

What is your worst symptom and how do you cope with it?

The symptoms of depression and dissociation affect memory and concentration, which makes it difficult read and write.

I often go back to a published post to discover typos and glaring gaps in logic. I cope by writing shorter pieces and relying more on photography and abstract designs for creative expression.

I’ve also stopped judging myself when I find mistakes in the work I post, although it’s frustrating to discover a flaw I would definitely have noticed a decade ago.

As for reading, I do a lot of reading I can’t remember.

This is even true of my work.

I often think I’m reading another bloggers post for the first time and discover that I’ve already liked and re-blogged it.

It’s confusing and frustrating.

What one thing about you has changed because of your struggles?

I miss reading and writing longer, more complex, stories, but I’m learning to be patient with myself, and to set more realistic timelines for achieving goals.

I am more compassionate toward other people.

What words of advice or encouragement would you give to someone else suffering?

I’m changing the last word from ‘suffering’ to ‘disabled’, because suffering does not have to define life with a chronic illness.

My advice is set goals and let go of the way you defined success when you were healthy. Give yourself plenty of time to complete those goals.

Never compare your achievements to the achievements of people who aren’t ill.

Learn new skills and practice them.

I knew absolutely nothing about photography when I became permanently disabled. I still know nothing about photography. but I’m better at it.

Name one good thing that has come out of having a chronic illness.

Now that I have the right diagnosis and treatment, I have a better understanding of the forces that shaped me as a child, and a better understanding of why I made certain self destructive decisions as a younger man. I’m forgiving because of it.

The Dissociative

What one thing do you disagree with that is widely accepted as true about your condition?

I obviously disagree with the idea that Dissociative Identify Disorder doesn’t exist. If I go to a shrink and tell her I think I have other personalities and the craziness of it is wrecking my life, I expect her to believe I believe they exist and to treat me accordingly.

I wish the United States had mental health system  that wanted to treat the brain’s mind.

If you could change only one aspect of your illness, what would it be?

Some days I get sick of feeling like I’m running in place. I want the illness to go away.

Name the one thing that works best for you for symptom relief.

I get relief from photography or throwing myself into a project. I also try to eat properly, exercise, and get a solid night’s sleep.

Based on your experience, what is one thing that you would tell someone newly diagnosed with chronic illness?

Learn as much as you can about your illness and become your own advocate.Why did you start blogging?

I started blogging to advocate for better medical treatment for people with mental illnesses.

The blog began to shift focus in 2016 and is now more focused on  art and politics., but I haven’t forgotten my roots.

My nominees

Most of the disability bloggers I know have gotten this award from Melinda.

My two nominees for this award are Dream Big, Dream Often and Jason
at Opinionated Man.

My questions for them are the same as those asked of me.

Check out Stacy Chapman’s award post at Fighting with Fibro

‘The Dissociative’ (c) Rob Goldstein All Rights Reserved