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


Rob’s Weekly News Wrap-Up 02/22-03/01

update 03/03/19

I just learned that the formatting of this post got wonky and needed fixing.
My apologies for whatever it was that caused it.  The post looks fixed now.

This was a week of truth-telling and hypocrisy as Congressional Hearings opened on Wednesday with a day’s worth of public testimony from Trump’s former lawyer, Michael Cohen.

 

My take? GOP congressional reps don’t know who they work for or why they were hired.

 

Trump’s visit to Viet Nam with North Korea’s Kim Jong-un ended with the president looking like a fool when he left early and defended the brutal autocrat’s murder of an American citizen.

Friday opened with news of breaches of National Security at the highest levels of government because the President gives high-level security clearance to family members.

 

Oh yes, and Jussie Smollett:

 

On a personal note, it was a busy week, my podcast with Matt Pappas at Beyond Your Past went live. I’ve also upgraded my video software and other equipment so I have some studying to do.

02/22

 

02/23

 

02/23

 

02/24

 

02/24

02/25

 

02/25

02/25

 

02/26

02/26

 

02/26

02/27

02/27

 

02/27

 

02/27

 

02/27

02/27

02/27

02/28

 

02/28

02/28

02/28

02/28

02/28

03/01

03/01

03/01

03/01

03/01

 

03/01

 

 

03/01

03/01

 

 

03/01

 

03/01

 

03/01

 

 

 

 

Rob Goldstein 2019

 

Rob Goldstein: Featured on Beyond Your Past

I’m proud that I’m this week’s featured podcast on Beyond Your Past.

I have a multiplicity of conflicting opinions about everything including
my diagnosis.

These conflicts manifest as a pattern of symptoms that affect productivity.

Learning to cope with these symptoms is a primary treatment goal.

This is the core of this week’s podcast with Matt Pappas.

Dissociative Identity Disorder: Do Your Alters Agree with the Diagnosis of DID?

2011 Blackerry shot of a graffiti mural in San Francisco's Mission District
Campos

 

The Beyond Your Past Podcast is hosted by Certified Life Coach, NLP Master Practitioner, and Mental Health Advocate, Matthew Pappas. He is also the founder of SurvivingMyPast.net, a blog in support of all who have survived the Trauma of Abuse.

 

Beyond your past is a great resource for people with C-PTSD and other trauma related symptoms.

‘Portrait of Rob Goldstein #25’ and Campos (c) Rob Goldstein 2019

Dissociative Identify Disorder: A Sliver of Grief

It was easy to get lost in a virtual reality; I’ve always lived in one

My experience of dissociative identity disorder is unique yet part of
a pattern of signs and symptoms expressed by different people in
similar ways.

Each person is unique but our bodies are variations on a theme
shared by all animals.

I like to give a clinical context to my discussions of life with DID.

People with DID are not crazy, I use reason to cope with a chaotic
inner world.

I’ve addressed the experience of psychological regression in earlier posts.

Digital painting of a child weeping in a pool of blood

Regression: n. a return to a prior, lower state of cognitive, emotional, or behavioral functioning. This term is associated particularly with psychoanalytic theory, denoting a situation in which the individual reverts to immature behavior or to an earlier stage of psychosexual development when threatened with overwhelming external problems or internal conflicts. —regress vb. —regressive adj.>>>>

 

Atavistic Regression, a term first used in hypnosis, describes a reversion to the ‘ancestral self’.

Dissociative Identity Disorder begins as a protective self-hypnosis that becomes more extreme and elaborate over time.

“Self hypnosis is central to the development of dissociative symptoms and DID.”Dissociative Spectrum Disorders in the Primary Care Setting

A person with DID may experience atavistic regression on a spectrum from feeling oddly younger to becoming a child self with all the mannerisms and speech patterns of a child.

Child alters often talk in a child-like way, but unlike a biological child they can normally understand abstract concepts and long words. They are often found to hold memories of child abuse which occurred at around the age the child alter feels he/she is.  Some may have the speech or appearance of a very young child, the youngest being unable to talk, read or write. Child alters should not be confused with the concept of having an “inner child”, which applies to non-dissociative people.  Child Alters and DID

Bobby is one of the teens: he has access to a lifetime of information.

My first best friend

A brownie snapshot of a boy age 8 and a girl age 5
My Sister was my first best friend.

I last saw Sandra In 1980.

We watched the sun set at Colonial Lake and reminisced about a game we called Super Girl; I lay on my back and raised her up on my hands and feet: she stretched out like an acrobat and flew while I sang nonsense lyrics to the theme from ‘Superman.”

When Sandra died I went numb and flew to West Virginia; I spoke at her
funeral and flew home the next day.

Sanpshot of the wing of a plane against a surreal horizon taken with my Samsung
On the Flight from Charlotte to San Francisco

Death’s Anniversaries

“Anniversary reactions are the re-experience of a prior traumatic event — a death, a disaster or an individual tragedy. They are triggered by a specific date or event that strikes a chord deep inside our minds, which can be a traumatic portal to the past. A birthday, a notable date or a holiday can link to an earlier moment in our lives that was full of trouble, hurt or conflict. When they do occur, a person who may be highly functioning can be overcome and feel powerlessness, even immobilized.”  Mastering the Anniversary Reaction

When Sandra was born, I was 4 and already dissociating.

When Sandra started walking, I ‘became’ a little girl. I called
myself Sara.

We spent hours playing with dolls or making mud pies on the porch.

Everyone grieves but not everyone grieves in fragments.

After my sister’s birth, my Mother’s abuse worsened, as did the anti-Semitic
abuse of our Evangelical neighbors.

Jews were not the ‘right kind’ of white people in the segregated South
of the early 1960’s.

When I was six I signed my name ‘Antonio’.

I don’t know how many child parts knew my sister and loved her.

Shortly after Christmas, I noticed I felt like a child.

I lost confidence in my writing and lost skills; I forgot how to
proofread and spell.

Then grief and tears and a thought: my first best friend is dead.

‘My first best friend is dead.’

A Sliver of Grief

The Nurse picks
you up and shows
you to

Daddy,

and I
cry

because

I live in

the future

and
you are
dead–

and I am
alone.

(c) Rob Goldstein 2019

This film is an over the top yet accurate depiction of how DID feels inside:

New Year’s Resolutions, 2019: With An Attitude of Gratitude

Last year was a good year; I accomplished most of my goals.

I gave my first podcast interviews, one on Beyond Your Past and another on
The Magic Happens.

Two of my articles about life with Dissociative Identity Disorder are published on Surviving my Past.

I had an amazing collaboration with Teagan Guinevere that stretched my imagination and broadened my skills in graphic design and video.

Teagan wrote a story each week based on the three ‘things’ I gave her the week before.

I used VR to make the illustrations and a weekly video.

This is Gramps and Lulu from Hullaba Lulu on Teagan’s Books.

Illustration for Hulllaba Lulu
Still Life with Giorgio de Chirico

Through my collaboration with Teagan, I met interesting new bloggers and discovered a  thriving community of supportive and gifted writers and
artists.

Offline, I reconnected with an old friend who now lives in Vancouver.

We visited in July; he returned some old books and writings I thought
I’d lost when we moved from Hawaii to San Francisco in the 1980.

I felt like I was greeting long-lost family when I held a few of those old books.

The Cover of St. Genet by Jean Paul Sarte
Saint Genet by Jean Paul Sartre

 

The book cover of the White Paper by Jean Cocteau
The White Paper by Jean Cocteau

In private life, I’m in better mental health despite the triggers and stress of
living under a political regime that feels like an abusive family.

Yet, life must go on.

Here is a short list of goals to achieve within the next 12 Months:

  1. Select and edit the work for a book of poetry.
  2.  Learn about self-publishing.

  3. Publish the book of poems.

  4. Broaden my knowledge of video.

  5. Explore the idea a part-time job with my shrink.

  6. Make my daily walk a daily walk.

  7. Retain an attitude of gratitude.

My partner and I took pictures of each other on our anniversary this year.

This year marked our 29th.

He’s asked me not to post his photo, so here’s mine:

Rob Goldstein in Golden Gate Park, 2018
Golden Gate Park, November 5, 2018

Happy New Year to my WordPress peeps! Hey Laurel! 🙂

Let’s close with something fun! 🙂

I’ll be mostly off until the end of the holidays.

What are your resolutions?

(c) Rob Goldstein 2018

A Moment of Chronic Pain

I have a gizmonic exercise bike I found on the sidewalk last year.

I say ‘gizmonic’ because it has a computer that monitors heart rate and caloric output.

It also has games.

I brought it home and slipped some batteries into it and
nothing.

It looked like the computer was broken.

The fix was simple.

The springs that held the batteries in place weren’t making contact
with the batteries.

I stretched them and Bingo!

A fancy exercise bike for the time it took me to stretch
some springs.

My favorite game is the  ‘Calorie Destroyer.

The faster I pedal the more ammo and mobility my gun has.

Last week I raised the seat for better leg extension.

Bad idea.

As I reached level four I felt a twinge of pain in my lower back.

Did that stop me? Of course not!

I was taught to ignore pain.

The twinge became a sharp pain.

The next day I felt stiff.

Friday I walk across the City to therapy.

I began to dress.

There’s  a small chair in front of the door to bedroom closet.

I needed a jacket so I moved the chair and felt something pop; a jolt
of pain raced up my spine and down my legs.

Did I decide not to walk over five miles to my therapist, most of it up hill?

Of course not!

I was in so much pain that when I got home I took two aspirin and a double dose of ‘Clonopin.’ Most docs use benzos to treat severe spasms of the lower back. (I don’t advise anyone else to ever do this without consulting a doctor.)

I laid down and entered the world of pain.

Survival in the world of pain means finding the ‘right’ position: a way to arrange one’s body to cut severe pain.

Finding the ‘right’ position and holding it for as long as possible was the focus of all of my energy and concentration.

I’d find a position only to have to find another position five minutes later.

This meant having more pain to find respite in less pain.

For all my emotional pain I have never had to deal with severe medical pain.

After it was over I had a deeper appreciation for the suffering and courage of
people in chronic pain.

Rob Goldstein 2015-2018

First published November 2015
Revised November 2018

Dissociative Identity Disorder: Learning to Trust

The patients’ job in intensive psychotherapy is to ask why.

Why do I seek out women who are devoid of the capacity for love?

Why do I veer from an extreme identification with the middle class to an extreme identification with the poor?

Why do I force myself to fail economically just as I get closest to winning?

Why do I sometimes behave as if I hate myself?

I first grappled with the problem of internalized stigma during the early days of the AIDS epidemic when I wondered if the AIDS was God’s judgment.

None of the intellectual and political constructions that served me as gay activist in the 1970’s could defeat the internalized homophobia unleashed by AIDS.

I watched men die from grief, self-hatred, and fear and I was nearly one of them.

This was when I realized the true function of any ‘ism’ is to convince the target to self-destruct.

This was why any novel written about gays before Stonewall usually ended with suicide or the impoverished death of the gay character.

AIDS was the greatest tragic ending, infused with the dissonant myth of a loving, yet vengeful God.


Internalized homophobia was the least of my problems.

AIDS was trauma on trauma.

I didn’t know I had a dissociative disorder.

I was living in the worst possible place at the worst possible time
for someone with Dissociative Identity Disorder.

Any spot on my arm sent me into panic, so much, so I became a frequent
flyer at the local crisis clinics.

The shrinks eventually gave me a prescription for Xanax.

Xanax
                                 Xanax

The only thing I knew about Xanax was it made the fear go away.

The pharmaceutical industry reported Xanax had an anti-depressant effect.

By 1986 I was on a prescribed dose of eight milligrams a day.

A seizure when I decided to stop the drug was how I learned  Xanax is addictive.

2011 photograph of a mannequin in a shop window on Mission Street taken in 2011 with a Blackberry
Xanax

My DID allows parts of me to form attachments while protecting the parts that are fragile and afraid.

One goal of my treatment is for me to learn to trust a woman.

This process of building trust with a woman who wants what’s best for me and who acts in my interests is a path to becoming whole.

John C. Calhoun Homes
A digitally altered snapshot of one of my childhood homes.

As I enter my 8th year of intensive psychotherapy, the questions I must
ask are less confounding.

When I entered treatment in October of 2011, I felt like a helpless child.

It is now October 2018.

I feel more whole.

(c) Rob Goldstein 2015-2018
The Photo of Xanax found on Google Images

First posted November 1, 2015-updated November 8, 2017 – Rewritten and Updated October 21, 2018

 

Save