originally drafted January 2015
Funny thing about brain damage– on some level, I know I have brain damage-I’m pretty much aware of it from the moment I open my eyes in the morning to when I close them at night– kind of hard not to as this damage frustrates every aspect of my life- from tying my shoes to having a conversation.
And yet at the same time, knowledge of my brain damage, along with autobiographical details of my life– my thoughts and beliefs, feel vague and intangible, like an imperceptibly faint song or a blurred image. It’s always there but disappears when I reach out to examine it.
This simultaneous knowing and not knowing my experiences and of the presence of my brain damage makes me incredibly vulnerable to confusion, usually exacerbated by the insistence from a family member, friend, teacher or doctor that “I sound fine,” when I insist that I’m not. My world has been torn apart. I’m confused and scared. This mostly good intentioned downplaying of my symptoms almost always leads me to doubt myself.
Maybe they’re right. Maybe I am exaggerating– my perceptions are off, and I’m making something out of nothing.
It’s hard for me to dispute-because the bedrock of my experience seems to have vanished from my mind. Doubt inducing exchanges like these usually lead to me feeling
1.) More confused
2.) Ashamed at complaining about problems I “clearly don’t have”
3.) Motivated to force myself to do things I’m no longer capable of followed by
4.) Embarrassment and more shame when I fail to follow through with the impossible
To combat this uncertainty, and gain a solid grasp of my story, I made a brain damage book. It was inspired by the journal Lucy on 50 First Dates made for herself to give her an explanation of her experience in her own words. Each reminder of her condition cause her grief, but her journal helped her come to terms with her inability to make new memories and helped her keep current on all the happenings in her life.
In my book, I copied survivor’s quotes that were submitted to the FDA, facts about the damaging procedure, and a pamphlet from Peter Breggin’s web site. When I read through this book, it reconnects me with a horrible reality that is always there, but I can never fully perceive.
And like Lucy, I grieve when I read it. Every time.
This is bad!
I don’t want brain damage!
I have dreams and plans!
I want my life back!
How could this happen?
Why won’t anyone believe me?
It’s so obvious! Why did I let them make me doubt myself?!
I haven’t been reading my shock book, lately. Can you blame me? It’s not exactly a pleasant way to start the day. However, I’ve been refreshing my memory by doing research.
I’m currently taking a neurobiology course and have revisited a scientific paper that changed my shock research path several years ago. I hope to tease apart this study to better understand the impact of running an electric current through the brain. Like my ambiguous knowledge of my own life, I know this study well, I’ve read it numerous times, but my response is still the same; grief and horror. Every. Time.
I see the dramatic brain alterations caused by shock revealed in the colorful brain scans used by the researchers. They refer to the areas permanently damaged by ECT referring to them as, not areas with a function or a purpose, but as “key circuits implicated in mood disorder.” With this belief, damaged is seen as a good thing. And hey, this gives credence to the “hyper-connectivity hypothesis” which absurdly claims that too much activity in these regions may be the real cause of mood disorders. This conclusions completely disregards the rich complexities of physiology and the human experience.
This study stirs up so many thoughts and emotions.
I’m terrified at what happens when smart people don’t think critically or question what they know. Reality is staring them in the face, and they are oblivious.
As I read this I’m incredulous as I consider the amount of education these researchers have had. The kind of intelligence they need to conduct, carry out and record this study. All of this skill, all of this knowledge, all this evidence of damage and yet they don’t see the awful reality that shock survivors and handful of enlightened physicians know. These researchers instead live a fantasy world of biological mental illness, magic pills and electricity that doesn’t damage, but instead heals.
In the first week of my neurobiology course we learned about the safeguards of the brain. This organ is so important and so delicate that it’s wrapped in three membranes, floated in fluid and encased in bone. That’s five layers!
How is a procedure that slips passed all these barriers not invasive? How can it be considered a good idea?
A last resort for treatment resistant depression…
Safe and effective…
We don’t know the mechanism but it works…
Memories comes back…
I’m disturbed by how much respect and power a couple of initials after a name, MD, PhD, gives a person and also the unquestioned confidence people place in the “scientific method.” Many automatically assume because it has science in the title, that it’s an unbiased, unemotional process of cold, hard facts and is exact as 1+1=2.
It is not. Not even close. Sure, certain fields of science are very specific and methods of measurement are clear and precise and the subject of their research can be assessed without the need for abstract frameworks. However, when someone tries to measure things like human behavior, happiness, sadness, memory and how the human mind and psyche responds to pills, psychotherapy and electrically induced seizures and they’re on less concrete ground.
Scientific studies are a laden with financial, career and ego interests.The conclusions themselves are often ultimately hints of proof or disproof of a hypothesis, with numerous known and unknown factors. Methods of study are not rulers or scales, but arbitrary frame works, in the case of electroshock studies, depression rating scales, memory tests based on current theories of memory that may or may not be constructed to be sensitive measure the types of dysfunction caused by shock. All of which are documented in complex mathematical/science-y language, and follow a complex processes researchers used to fetch their conclusion. All the above make it easy to hide, omit and flat out lie about results with the general public none the wiser. All they hear on the news, in commercials and around the web is a study proved such and such drug, treatment or product is scientifically proven to cure acne, depression or leave you with a brighter whiter smile in six weeks guaranteed or your money back!
Just say a “scientific study” and the majority believe it by default.
Desperation and slowly suffocated hope
This deeply ingrained, ignorant mindset reminds me of my countless attempts to convince my intelligent, skilled, compassionate doctors my brain was damaged by electroshock. Their devastating, repeated insistence that “it was not possible,” “I sound fine” at my claims.
As I replay this scenes over in my mind, I can hear and feel their growing irritation with each of my desperate attempts to gain acknowledgment and help. They never considered what I said was true-not once. Even after they had compelling evidence from an IQ test that showed my working memory was gone.
I think of my current work with a neurologist, another skilled and intelligent man, who, even in the face of staggering evidence of damage revealed by neuro testing that suggests at age 30, I’m in the early stages of dementia or Alzheimer’s, questions, not shock therapy, but my collection of ever present learning disabilities.
“Maybe you were always this way…”
I’m broken hearted over everything I’ve lost, everything other survivors have lost, and the fact that our experiences are denied by the medical community and much of society.
I relive my own grief and trauma. I grieve for all the people who are duped into thinking shock would help, and they would return to their lives made whole by electrically induced seizures.
I experience grief every time a person stops by the shock support group asked us shock veterans how long it took before we started feeling normal again- for our memories return. Answer? Many of us never recovered. Were permanently disabled. And countless irreplaceable memories are lost forever. This person is on the verge of realizing a horrible reality; they were lied to. Their damage will likely be unrecognized. Help will be withheld. Cultivated skills, and capacity to learn and love, may be lost forever. Their most precious memories; walking down the aisle on their wedding day, their children’s childhoods, friends and all the other prized moments that tell them, this is who you are, these are the people who gave your live meaning.
The life they lived before and the world they knew are gone.
I grieve even more for those who never chose shock, but had it forced on them.
People who were aggressively coerced into shock like Linda Andre.
I grieve over those shocked against their will like Wendy Funk, children like Ted Chabsinski, Sue Clark Whittenberg and Julia Hoeffler Welton. People violently assaulted, many left to carry their trauma along with their damage long after ti occured.
They didn’t even have the illusion of informed consent like many of us did.
All of this suffering, all of this heart ache, and doctors like the ones who conducted this study maintain their willful blindness and enthusiastically promote this destruction assault to the brains of suffering people.
These people’s stories, their devastating losses, ongoing suffering and hardship haunts me.
I will continue to repeat this emotionally jarring process, day after day, until my reality finally sinks in, or I find a solution. I put myself through this pain because it’s better to be stung daily by this horrible truth is better than accepting an outsider’s insistence that my reality doesn’t exist, and live confused, ashamed and humiliated when I try to live as though my damage doesn’t exist.
Along with my brain damage book, I made another called the Win Book. It’s an equally important frequent read for me; I plan to write about as well. Stay tuned 🙂
Also, if you’re discouraged by your current circumstances as a shock survivor, trust me, you have reason to be, but have heart; the survivors I mentioned all fought and survived and made some sense of various situations and went on to make major contributions to the psychiatric survivor movement. If you’re unfamiliar with these amazing people, I encourage to read their stories and look into their work. No matter how old you are, how many shock treatments you’ve had, there’s hope for all of us 🙂
Andre, L. (1991, September). Electroshock as head injury. Retrieved September 16, 2015, from http://www.ect.org/effects/headinjury.html
Andre, L. (2009). Doctors of deception: What they don’t want you to know about shock treatment. New Brunswick, NJ: Rutgers University Press.
Applied Health Sciences (Mental Health). (2012). Electroconvulsive therapy reduces frontal cortical connectivity in severe depressive disorder. Retrieved from http://www.pnas.org/content/109/14/5464.full.pdf
Breggin, P. (2012, 9). New Study Confirms Electroshock (ECT) Causes Brain Damage | Dr. Peter Breggin. Retrieved September 17, 2015, from http://www.huffingtonpost.com/dr-peter-breggin/electroshock-treatment_b_1373619.html
Breggin, P. (2013). No one should be given shock treatment. Retrieved from http://www.ectresources.org/Shock_treatment_brochure_June_8.pdf
Chabasinski, T. (2012, July 7). A Child on the Shock Ward – Mad In America. Retrieved from http://www.madinamerica.com/2012/07/a-child-on-the-shock-ward/
Funk, W. (1998). What difference does it make?: The journey of a soul survivor. Cranbrook: Wild Flower Pub.
Hoefeler Welton, J. (2014). From the lion’s mouth (1st ed.). CreateSpace Independent Publishing Platform.
Neuroscientifically Challenged. (2015, April 19). 2-Minute Neuroscience: The Meninges[Video file]. Retrieved from https://www.youtube.com/watch?v=CIkgQcmv0Xs
Rice, J. D. (2015, August 12). An Outpouring of Love for Psychiatric Survivor and Activist, Sue Clark- Whittenberg | aftershock. Retrieved from https://aftershocklifeafterect.wordpress.com/2015/08/12/an-outpouring-of-love-for-psychiatric-survivor-and-activist-sue-clark-whittenberg/