Tag Archives: autistic burnout

Autistic Energy – A Depletion of a Person

I have been thinking a lot about energy lately. Particularly about human energy and why I am always so tired.  I have written about being tired before –> The Hidden Meaning Behind “I’m Tired”

Being tired, burned out, exhausted is something that I continually deal with on a regular basis.  Being tired never seems to end. There is a meme that I really relate to – “I am not an early bird or a night owl. I am some sort of permanently exhausted pigeon.”

Exhausted Pigeon

Why am I like this? Why I do I feel tired, exhausted, and burned out all the time? As with everything in my life, it is never one thing.

I am not the first autistic person to write about this topic. Some others include:

The common message in all of these is the problem with masking and not being able to be your true self in a world that is not designed for you. Societal expectations have an enormous impact on an autistic person’s energy levels.  Contrary to what our society pushes, having the goal to look “normal”, or “be indistinguishable from our peers”, is not a good thing.  Having this expectation that we must strive to pass as non-autistic is damaging to the autistic person.  Unfortunately, we learn at a very young age that in order to survive, we must wear a mask.  As a young person, we may not truly understand why we wear that mask; it is almost instinctual, ingrained in our psyche that in order to make it in our society, we must hide our differences.  We become targets if we don’t.  Wearing a mask is exhausting and we can’t always hide who we are.  No one can maintain a mask indefinitely.  At some point, cracks will begin to form.  A person will eventually burnout and crash due to the tremendous toll that wearing a mask takes on a person.

That mask hides a lot of crap. Take me for example.  By looking at me, you are not going to see a highly impaired autistic person who lives in chronic pain and has mobility issues from Ehlers-Danlos Syndrome, who also has Complex-PTSD from a medical trauma and domestic abuse, who has Generalized and Social Anxiety Disorder, who struggles with depression and panic attacks, who has a math learning disability (dyscalculia), but who also has a Bachelor’s in Science degree, a Master’s in Education degree, been a teacher for over 20 years.  People have gotten frustrated with me over my dyscalculia.  I have been asked, “You are so good at Science. Why are so you so bad at math?”  A person can be good at one thing and still have a learning disability in another thing.  One doesn’t cross the other out.

I am called “high-functioning”, but that is not correct. Functioning labels are very problematic. I am seen as “high-functioning”, but then my needs are ignored.  I am told I am being ridiculous or overdramatic, that I am not really impaired, because I have been successful in X, Y, and Z.  I am questioned as to why I can’t do a thing when I did the thing last week.  There are days I stay in bed all day in recovery mode.  It takes me a long time to recover from social activities.

My son has been seen as “high-functioning” as well. The reason is that he is highly verbal and it considered twice exceptional. His educational support needs were over looked, because the school saw a gifted student and didn’t think he should be receiving services even though he qualified for those services.  He eventually had to be home schooled due to the school not being able to meet his specific needs.  My son could no longer function in a regular school setting.  Functioning labels are harmful.

My daughter has been seen as “low-functioning” and it really bothers her. People think that she can’t do things. They see her as “low-functioning”, because she doesn’t talk much in public and she carries around a stuffed animal and uses “chewies” to help her self-regulate. She complains that things in school are “dumb-down” for her and she finds that insulting. She has learned to advocate for herself and having reached the Age of Majority, she is now in charge of her Individual Education Program (IEP). She wants to be challenged, but not to the point that it overwhelms her. Who would want to be overwhelmed? My daughter is not “low-functioning”.  She has needs just like anyone else.  She can function when her needs are met.  Doesn’t that apply to everyone?

Both my children learned to wear a mask at a very young age. It is not something I set out to teach them.  I didn’t even know I was autistic until after both my children were diagnosed.  As I stated earlier, it is almost an instinctual behavior for an autistic person to learn wear a mask.  Both my children struggle with mental health issues.  Some of these issues are genetic and some were caused by their father. Children don’t choose to be neglected and emotionally abused by a parent.  Domestic violence creates ripple effects on those who have been subjected to it. If domestic violence was experienced in childhood, these ripple effects can last way into adulthood.

There has been more information coming out recently about the intersection of autism and trauma. Lauren Gravitz did a piece about this topic entitled At the intersection of autism and trauma. In the article, Connor Kerns, assistant professor of psychology at the University of British Columbia in Vancouver, Canada, is quoted:

 “We know that about 70 percent of kids with autism will have a comorbid psychiatric disorder,” says Connor Kerns, assistant professor of psychology at the University of British Columbia in Vancouver, Canada. Depression, anxiety and obsessive-compulsive disorder are all known to be more common among autistic people than in the general population, but PTSD had largely been overlooked. Until a few years ago, only a few studies had delved into the problem, and most suggested that less than 3 percent of autistic people have PTSD, about the same rate as in typical children. If that were true, Kerns points out, PTSD would be one of the only psychiatric conditions that’s no more common in people with autism than in their typical peers.

One potential explanation, Kerns says, is that, like other psychiatric conditions, PTSD simply looks different in people with autism than it does in the general population. “It seems possible to me that it’s not that PTSD is less common but potentially that we’re not measuring it well, or that the way traumatic stress expresses itself in people on the spectrum is different,” Kerns says. “It seemed we were ignoring a huge part of the picture.”  

Bushraa Khatib wrote An in-depth look into how people with autism experience trauma, and in it, Khatib states:

To date, little research has looked in depth at the experience of trauma in people with autism. Research has shown that people with autism have a higher risk of adverse childhood experiences, such as financial hardship, mental illness or substance abuse in their families or parent separation or divorce. Such events have been consistently linked to immediate and lasting health disparities, including post-traumatic stress disorder (PTSD), anxiety, depression and other mental health issues.

There are also many reasons to believe that individuals with autism are more likely to experience and struggle to recover from traumas. According to a 2015 review article published in the Journal of Autism and Developmental Disorders, studies have found that youth with intellectual and developmental disabilities are more likely to be maltreated than their peers. Social isolation, family stress, and poor communication skills – all of which are prevalent in children with autism – increase the risk of maltreatment

The lack of awareness and understanding of autism within the community and increased social isolation of individuals with autism can also put them at additional risk for victimization.

The impression I am getting from these articles is that there is a general lack of understanding of autism and how co-occurring conditions manifest in an autistic person. Due to this lack of understanding, society is ignoring a huge part of what is happening.  Living in our society, being told we must meet expectations that outweigh our abilities to meet them, constant stress of change, the ongoing sensory onslaught, the inability to recover quickly enough from the strain of pushing to meet these external expectations, and this apparent instinctual behavior to mask ourselves so that we can pass as “normal” is harming us so much so that there are those who begin to see suicide as the only logical way to end the pain.  I have written about depression and autism before –> Social Skills and Depression.

From my blog entitled To Those Who Still Don’t Understand:

As the aforementioned article states, the ages for the life expectancy of autistics vary a bit, but the statistics point to an uncomfortable reality.  Autistic life spans are shorter than typical life spans.  A study out of Sweden completed late in 2015, entitled Premature mortality in autism spectrum disorder, revealed that people with autism died an average of 16 years earlier than those who do not have autism.  There are other studies out there that support the Swedish study findings. 

Why is it this way?  Why do autistics seem to die younger than those who are not autistic?

Previous studies had shown that 30 percent to 50 percent of people with ASD have considered suicide at some point in their lives.  Bullying, anxiety, depression, feelings of isolation and alienation all contribute to this.  There is a high cost trying to cope in a world that is not designed for you nor is accepting of you.

Then there are the co-existing conditions that seem to be common to people with autism. Chronic health problems can shorten a person’s life span.  Epilepsy, Elhers-Danlos Syndrome (EDS), gastrointestinal problems, sensory overload, and lots of stress related illnesses, which can lead to physical ailments, including heart disease, brain inflammation, strokes, and diabetes – these seem to be common occurrences in the lives of autistic people. 

I will end this blog with a something that I wrote on Facebook on January 11th, 2020, and to clarify that I am not suicidal:

My counselor told me today that the complex stressors that have been ongoing in my life have more to do with environmental/systematic issues than anything else. The type of assistance/support I need to reduce these complex stressors doesn’t exist. This is not the first time I have been told this. Other professionals and non-professionals have told me this over the years.

The system is rigged and it is broken.  Our society is not designed for people like me and families like mine. I feel like I am trapped in these seemingly never ending loops of environmental and financial instability, fight/flight/freeze response, and being retriggered again and again.

On a positive note, I have been able to climb to higher loops than where I was seven years ago. Back then, I was full-on in survival mode. I was a brand new single parent who was under-employed, in grad school, financially insecure, facing food scarcity, beginning the journey of coming to terms with my own disability and Complex-PTSD, needing to begin home schooling (another system failure), and beginning the journey of supporting my children through their own grief and trauma as well as helping them learn self-acceptance. There was a lot of crying, lots and lots of crying. Survival was my only option. I had to survive so that my kids could make it.

Climbing out of a swirling tornado is incredibly exhausting, and so much of that climbing I have had to do on my own while “pulling” my kids along with me, because no one gets left behind.

I am still stuck in that damn tornado, but I am a lot further up than I used to be. I am high enough to see the top edge, but I am still too far down with too much weight on my shoulders to reach it.

I need a break. I am tired. I am just so damn tired.

The Hell of a Meltdown – When Your Brain Becomes Flooded and Short Circuits

explosion

Image found at Regarding Autistic Meltdowns: What They Are, How to Handle Them, and Why Kids Having Meltdowns are NOT Naughty Brats

My Facebook post from yesterday:

So, meltdowns suck, are painful, are hugely embarrassing, and you cannot stop them . . .

Meltdowns don’t stop when you become an adult . . .

A meltdown has been ongoing all day . . . I am in hell . . .

My environment sucks . . .

Trying to block everything out with music. Life keeps intruding . . .

 According to Bec Oakley from Snagglebox, “Anybody Can Have A Meltdown”:

What are meltdowns?

Put simply, a meltdown is a state of neurological chaos where the brain and nervous system overheat and stop working properly. It’s called that because it’s the body’s equivalent to a meltdown in a nuclear power plant, in which the fuel in the reactor core becomes so hot that it melts and releases energy.

Sometimes it gets so hot that it causes an explosion, and the energy is released outside of the core. It’s this explosive reaction (crying, yelling, lashing out) that most people refer to when they talk about behavioural meltdowns, but that’s just the bit that you can see. There’s a whole lot more going on inside during a meltdown.

Bec Oakley goes on to describe what happens during a meltdown:

What happens during a meltdown?

When we find ourselves in a stressful situation from which we can’t easily escape, the brain becomes flooded with emotional, sensory or cognitive input which jams the circuits and kicks off the ‘fight or flight’ responses associated with panic. Executive functions like memory, planning, reasoning and decision making start to shut down, which makes it even more difficult to find a way out of the situation.

Eventually the neurological pressure builds to the point where it begins to trip internal circuits like language, or is released externally as an outburst of physical energy like yelling, hitting or running away. Although this explosive reaction often seems to come from nowhere, it’s just one part of the meltdown cycle.

Meltdowns are horrid things.  They hurt so much and you can’t stop them. They also don’t stop simply by becoming an adult.  I am 41 years old and I still have them.  At least now I know what they are and I can feel them building.  Five years ago I didn’t know what meltdowns were.  I also didn’t know what autistic burnout was.  Five years ago I was finally diagnosed and I finally had answers.  I wasn’t crazy, I wasn’t losing my mind, and I wasn’t broken. 

The first time I went into autistic burnout I had no idea what was happening to me. I had no words to describe it.  It was hell.  It felt like I had been sucked into a black hole.  I was being torn apart, yet no one could see it.  I was screaming for help, but no one heard me.  I had to claw my way out on my own.  It took years.  During that time I was diagnosed with PTSD. That was just over 12 years ago. That initial PTSD diagnoses has now been upgraded to Complex-PTSD.

I have fallen into autistic burnout many times since, but I knew what it was and I knew what to do. I have once again fallen into autistic burnout, but this time is different. I know longer have a healing environment to submerse myself in.  In fact, it is this environment that I currently exist in that has led to this newest bout of autistic burnout.  I have been having more and more meltdowns.  Yesterday was a particularly bad one.  As I type this I am still struggling to recover from it.  I am shaking as I type.  The crying that started yesterday morning hasn’t really stopped.  My brain wants to shut down, but I have to keep going.  I have responsibilities to take care of.  I don’t have the luxury of shutting down to allow my body and mind to heal. 

Yesterday evening I went through my old blogs looking for ones about meltdowns. I started blogging in September 2012. Pain and struggle seem to be re-occurring themes with me and it is getting really old.  Today I have been playing Avril Lavinge – Keep Holding On  over and over again. I am determined to make it through.  I will keep holding on.

Here are my past blogs about meltdowns:

The Dreaded Meltdown – Part 1 and The Dreaded Meltdown – Part 2 – February 10, 2013

Why Won’t They Listen? – January 27, 2014

Being Emotionally Exhausted – February 27, 2014

Here I am Again – The Long Road of Living Exhausted – January 8, 2015

Side to Side – May 13, 2015

Here is some more useful information about meltdowns and autistic burnout:

The Tell Tale Signs of Burnout … Do You Have Them? – Psychology Today Article

Ask an Autistic #3 – What is Autistic Burnout? – Video

Meltdowns: triggers vs. root cause – Blog (Life, His Way – Thriving with Autism)

 

The Hidden Meaning Behind “I’m Tired”

What comes to mind when a person tells you they are tired? Do you ask them if they didn’t sleep well the night before?  Do you start talking about changing diets or increasing their amount of exercise?  Do you think of anything at all or do you just nod your head and start chit chatting about other things?

I don’t remember the last time I wasn’t tired. I am perpetually tired.  The word “tired” doesn’t even seem to be an appropriate word for how I feel, but I don’t know what other word to use.  Exhausted? Fatigued? Overloaded? Drained? Burned out? Stressed beyond what would be considered acceptable levels? 

In September 2012, I began writing publicly about my journey with my family. That was eight months after I was diagnosed. I was the third in my family to learn that I was in fact autistic.  We each also have our own co-existing conditions that manifest themselves in ways unique to each of us.  We might share diagnostic labels, but how these conditions present themselves is different depending on whom you are talking about.  Age, personality, genetics, and environment all affect how these presentations occur.

This all plays into what it really means when a person says they are tired. Looking back over my old writings I see that there are common themes in many of them: exhaustion, stress, pain, burnout, and making it through it all.  

When asked how they are doing both my children often have a scripted response of “I’m tired.” That simple two word response is actually a very loaded response. Hidden behind these two words is a long story of struggle, confusion, stress, frustration, pain, and exhaustion.

How does one go about breaking down all the components of “I’m tired”? Do you even try or do you just shrug it off, because you don’t know how to respond to it?  You see the person who said they are tired still getting through their day with everything that is required, so maybe you think their tiredness really isn’t so bad? Maybe you don’t stop and think about the reasons behind their tiredness and just add more to their already full plate. Maybe you are unaware of how their plate changes sizes depending on the day, so you just keep loading more things on them. More requests, more demands, more expectations, more and more until the person either explodes or shuts down.

Human beings are amazing creatures. They can take a lot of shit before it is just too much and their bodies and minds simply cannot endure any more.  Resilience, determination, patience, and stoicism are aspects of me that have gotten me through so much crap in my 41 years on this planet. I endure. I go on.  I keep moving forward, because there is no other direction for me to go.

I’m tired, sooooo very tired. I often wonder if there will be any time in my life when I am not tired.  I think there will be. I really do.  There has to be.  My brain cannot fathom that there will never be a time when I can say I am not tired, so I keep moving forward.  I look forward to that day when I am no longer tired, a day when I can wake up in the morning and actually feel refreshed.  It has become a quest of sorts.  A day free of exhaustion!  That will be an awesome day.

A few past blogs about exhaustion, burnout, and resiliency:

Here I am Again – The Long Road of Living Exhausted

Being Emotionally Exhausted

Exhausted All The Time

Here is the blog I wrote about resiliency.

This blog was a response of mine to Musings of an Aspie’s blog that is entitled “Autistic Regression and Fluid Adaptation”.

Here are some helpful Tumblr blogs about autistic burnout.

 

Choosing the Path of Advocacy – A Personal Commitment

guidetoheartI have always followed my passions for as long as I can remember. I have always been very goal oriented and my goals follow my passions. I go where my passions lead me; unfortunately the road has been anything but easy. I am an autistic adult. To be more specific, I have Aspergers, but I didn’t know it until I was 36 years old.

For one of my classes, I was required to read Indian Creek Chronicles, written by Pete Fromm. This book is a personal journal of Fromm’s account of seven months spent alone in a tent guarding salmon eggs in the Selway River Valley in Idaho. Unlike Fromm, who had opportunities “fall on his lap”, I had to plan and work hard to follow my passions. I grew up not knowing I was autistic, I didn’t have any help and I struggled, but I was determined.

Growing up, I didn’t have to listen to the things that are said about autistics today. I wasn’t told that, because I am autistic, I couldn’t get an education, or be gainfully employed, or have a family, or be considered a danger to society. This is what kids are hearing these days and it is totally false. These days more and more kids are getting services at school, teaching them skills that for most people seem to be intuitive. I never got services, but I persevered and I followed my passions. It cost me though.

Autistic burnout ListI have experienced Autistic Burnout multiple times. The first time was the worst, because it was associated with me developing PTSD from a medical trauma.  We didn’t know I was autistic at the time and did not understand what was happening to me. I got the wrong help and it took years to climb out of the darkness I had fallen into. Autistic Burnout can cause a person to lose their ability to function. At the time all I knew was that I had two little people who needed me, my son and my daughter. I had to keep going. I still feel the pull of that darkness from time to time.

To keep myself from falling back where I was I have to pay close attention and make sure I rest when I feel overloaded. I have to reduce triggers whenever I can. This can be very difficult as a teacher. Even though I love to teach, it has taken a toll on my mental and physical wellbeing. I have had to make adjustments. Even though I am an adult, I still experience meltdowns. You don’t grow out of them; you just learn how to handle them better. I have to allow my body to go into what I call “shutdown mode”. I need to allow my body to reboot itself so I don’t go back to that dark place.

C-S-Lewis-Integrity-e1368209736261Through my journey of discovering my neurology and that of my children, I have found that I am very passionate about advocacy. Due to what I have been through, I have an understanding of the struggles many people face.  Social justice is something that seems to be felt strongly amongst the variety of autistic people that I have encountered.  I am no different.  I seem to have this very strong inclination to always do the right thing, whatever the right thing may be even if it hurts me in the process.  Things such as honor, integrity, and respect are all virtues that I hold very dearly. These virtues were not necessarily taught to me.

I come from an emotionally abusive home life, and I was determined to rise above it, not allowing the abusive pattern of generations of my family to be passed on to my children.  I was determined to put an end to it.  This determination spread out not only to my children, but to my students and then to my community as well.  The abuse, the lack of understanding, and the lack of willingness to provide accommodations and modifications that allow another to reach their potential needs to stop.  We are all humans regardless of our neurology.  We all feel emotion.  We all think. We all have a “voice”.  We all have our individual strengths and weakness.  This means we all need each other to make it through our days. No one is fully self-reliant.

declaration-independence2How do you get people to see that a person who does not function in a typical fashion is still a valuable member of society, that they deserve the same rights and as the others that do function in a manner that is typically expected? This is where advocacy comes into play. Advocacy is when you not only fight for change in policies that negatively impact peoples’ lives, you are also providing a possible solution to a problem and building support for acting on both the problem and the solution.  Examples would be fighting for the right to be educated, marriage rights, voting rights, housing rights, and reproductive rights, disability rights, fighting for clean water and clean air, and fighting for healthcare for all.  If advocacy is about fighting for your own rights and the rights of others, then what is self-advocacy?

According to Wright’s Law, “Self-Advocacy is learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination.”

Wright’s Law also explains the reason why self-advocacy is so important. It is “so that you have the knowledge needed to succeed and are given the chance to participate in decisions that are being made about your life.”

KeychainThis is why organizations such as ASAN (Autistic Self Advocate Network), GRASP (The Global and Regional Asperger Syndrome Partnership), AWN (Autism Women’s Network), and many local organizations such as ANUE (Advocates for Neurodiversity and Unique Empowerment) in Spokane, WA, for which I am a Founding Member of, are so important to people like my children and I. These various groups are membered by advocates and self-advocates who provide, information, support, and possible solutions to problems that people are having.   These organizations give a voice to those that may have not found their own yet or help make voices that are being silenced and ignored even louder.

Notice that I did not list Autism Speaks.  Autism Speaks tends to cater to parents and family members of autistic people, not the autistic people themselves.  Autism Speaks has a habit of promoting fear about Autism instead of acceptance.  They promote eradication through their push of finding a cure instead of promoting the message that autistic people have value in our world.

How does one help an advocate and a self-advocate? First, listen to them. Their concerns are valid and ignoring them and explaining that it is not that bad or the problem does not exist does not help people.  It makes the situation worse. Second, help a self-advocate understand their rights and responsibilities.  Self-advocacy is about empowerment and the more knowledge a person has about the problem, the better prepared they are in finding a solution. Third, help with stress management.  Advocating for yourself and others can take a heavy toll on you, mentally, emotionally, and physically.  Self-advocates need support and understanding and so do advocates.

I was never taught about advocacy as a child and I had no idea how to be a self-advocate, but that did mean I couldn’t learn as an adult. I first learned to be an advocate when I became a parent.  Something in me was not going to let the same negative things that happened to me happen to my children.  In the process of learning to be an advocate for my children, I learned to be an advocate for myself.  For me, it has been harder to be a self-advocate than an advocate.  This is why support is so essential.

helping handI have found some amazing people to help me along the way.  Like the people at the Arc of Spokane and the people involved with ANUE.  I have also been able to build a support network online as well.  Help is out there, but it is not always easy to find.  I often tell people right at the beginning that they are not alone.  I spent too much of my life alone, without a voice, and no way to ask for help.  I don’t want anyone to feel like I did.  Even if I can’t help the person directly with their problems, I know that I can at least let them know that they are not alone and that they will make it through.  Appropriate words of encouragement can go a long way in helping a person through difficult times.

The statements below contrast encouraging statements that imply faith and respect with discouraging statements that convey doubt and disrespect.

THE LANGUAGE OF ENCOURAGEMENT (Evans, 1995, Dreikurs, Grunwald, & Pepper, 1982)

Encouragement “I think you can do it.” “You have what it takes.” “You’re a hard worker.” “What do you think?” “I could use your help.” “It looks like a problem occurred. What can we do to solve the problem?” Discouragement “Here, let me do that for you. “Be careful; it’s dangerous.” “Don’t forget your assignment.” “Let me give you some advice.” “When you’re older, you can help.” “I told you to be careful.”
Encouragement “You put a lot of effort into your work.” “You’re a fine person.” “I know you did your best.” Praise “I’m proud of you when you do well.” “You did better than anyone else in the class.” “Next time, if you work harder, I know you can get an A instead of a B+.”

In life, I follow the three C’s – you have to make a choice, to take a chance, or nothing will ever change. My choice is to make the world a better place through advocacy and education.  As an advocate:

  • I pledge to create an environment of encouragement rather than discouragement.
  • I pledge to fight for the rights of others whose voices maybe silenced or ignored.
  • I pledge to fight misconceptions and educate those who insist on spreading those misconceptions.
  • I pledge to provide a respectful ear to those who need to be heard, but don’t know where to turn.
  • I pledge to help people achieve success by providing solutions to problems, instead of just saying it is not my problem.
  • I pledge to do what is right in the face of adversity.

“One voice can change a room, and if one voice can change a room, then it can change a city, and if it can change a city, it can change a state, and if it change a state, it can change a nation, and if it can change a nation, it can change the world. Your voice can change the world.”

– Barack Obama

————————

References

Berrington, Lucy. (2013, Nov. 14) A Reporter’s Guide to the Autism SpeaksDebacle. Psychology Today. Retrieved from https://www.psychologytoday.com/blog/aspergers-alive/201311/reporters-guide-the-autism-speaks-debacle.

Goodreads. Barak Obama Quote. Retrieved from http://www.goodreads.com/quotes/62978-one-voice-can-change-a-room-and-if-one-voice.

Evans, Timothy. (2005, Feb.) The tools of encouragement. Online Journal of the International Child and Youth Care Network. Retrieved from http://www.cyc-net.org/cyc-online/cycol-0205-encouragement.html

Wright’s Law. Self-Advocacy. Retrieved from http://www.wrightslaw.com/info/self.advocacy.htm.

Zurcher, Ariane. (2013, Nov. 13) What’s Wrong With Autism Speaks? Emma’s Hope Book. Retrieved from http://emmashopebook.com/2013/11/13/whats-wrong-with-autism-speaks/.

** Each image is linked to its source.

The Volcano is Awake

(Trigger Warning: Emotional Abuse, Medical Trauma, PTSD, Reference to Rape, Reference to Suicide)

Why am I still awake?  It is almost midnight.  Seriously, this is getting old.  I know what needs to come out; I just don’t know how to get it out.  Time to start writing.  No thinking; just let my fingers be my conduit, silently screaming through the keyboard.  The volcano is awake and wants to be heard.

Volcano

I hate myself.

I have hated myself for eleven years.  I have tried to ignore it.  I have tried to rationalize it.  I have tried to convince myself that what I did was necessary, that it was my only option.  Nothing is working.

I have been raging war with myself for eleven years.  This is what PTSD does to you.  It tears you apart, bit by bit.  Some people with PTSD are lucky enough to have memory problems regarding their trauma.  Not me.  I remember everything, where the sun was hitting the carpet, the color and design of the carpet, the arrangement of the chairs, and the way the receptionist looked and what the nurse look like who attended to me.  I remember the hospital room layout.  I was there for four days and I can tell you what each nurse looked like and the questions they asked me.  I was supposed get better.  My family expected it.  I couldn’t disappoint them even though my soul was screaming, telling me to run.  Why didn’t I run?  The desire to not disappoint my family was stronger than my soul screaming to run.  I am now scarred for life.

They wouldn’t help me.  I told her I felt like I was dying.  Why didn’t they help me?  Why was I left alone with a baby and a toddler?  They expected me to get better and when I didn’t they left me.  He hurt me.  He kept hurting me and no one would listen to me.  I was supposed to be a good little wife.  I was told he was under stress and I had to give him what he wanted.  She told me I was selfish for not wanting to go through with it.  I had to think of the family.  I couldn’t put them through another pregnancy again.  I had to think of my children.    My son and my daughter came first.  Guilt and shame.  I had no defense against it and they knew how to use it on me.

I also was entering Autistic Burnout and it would only get worse after my surgery.  When I was three years post-opt, I had lost so much of my ability to function that it took everything I had to remember to breathe, all I knew was that I had two little people that depended on me.  I made sure that I provided for their needs no matter what.  At this time I had no idea that I was autistic.  It would be years later that I would finally find out why I was the way I was.  It would even be longer when I learned about Autistic Burnout and how bad it really can be.

Autistic Burnout is also known as Autistic Regression.  Musings of an Aspie states, “A better analogy than regression is that of the demands of life exceeding a person’s resources.”  You simply do not have the personal resources to cope with what life is dumping on you.  I wrote several blogs about my experience with Autistic Burnout.  You can find them here – My reaction to Musings of an Aspie’s post “Autistic Regression and Fluid Adaptation” and Here I am Again – The Long Road of Living Exhausted.

AUtistic burnout (Image found at invisibleaspie.blogspot.com)   

Why did I give up the fight?  I didn’t want the surgery.  I kept telling them that.  It was my damn body after all, but they kept silencing me.  They wore me down and went after me when I was most vulnerable.  They used my responsibility to my kids against me.

I fought them for nearly a year after my son was born.  I had nearly lost my son at 21 weeks of his pregnancy.  My pelvic floor had collapsed taking my lower spine and pelvic organs with it.  My pelvis twisted like a pretzel.  My doctor told me that she didn’t think I would make it to 29 weeks.  She was sure I would lose the baby.  After five months of bed rest, multiple urinary tract inflections, and not being able to really walk, my son was allowed to be born at 38 weeks.  He was healthy and alive.  I had given up my body to protect his life.  I was told the only reason we hadn’t lost him that day when my pelvic floor collapsed was that his head was already below my cervix.  To be born, my son had to be pulled up and then pushed out.  He came out screaming.  All my labor pain was in my sacrum and tail bone.  My tail bone actually broke in three places during the ordeal.  He was born in less than three hours.  It happened so fast that I didn’t even break a sweat.  The pain was unbelievable even with Lamaze, but I knew it would end.  All I could think of was why was I going through this again?  How do women do this multiple times?  My labor and delivery of my daughter was painful, but not this painful.  She was to term and was born in less than ten hours.  I was on bed rest for her pregnancy for two months due to preeclampsia.

After my son was born, I wasn’t rebounding.  Something was very wrong.  I was in so much pain.  I could barely walk.  My right leg felt like there was a chunk of wood attached to my hip.  My back was like one of those Hawaiian dancing dolls.  No support.  I was terrified I was going to drop my baby every time I changed his diaper.  I had to brace him to me to bend down and brace him to me again as I forced myself back up.  After four months of physical therapy three times a week, my bones weren’t staying in place.  My bladder and rectum were not where they were supposed to be.  My period never returned.  I couldn’t have bowel movements normally and had urinary incontinence.  I couldn’t make love.  Physical pain, mobility issues, and bathroom problems were all I knew.

My doctor couldn’t believe that I wasn’t in a ball on the floor weeping.  She told me I was the most stoic person she had ever known.  I hate my stoicism.  I can’t turn it off.  I cry alone, in private.  My doctors don’t believe me when I describe my pain.  My family doesn’t understand.

Why did I succumb to the bullying and pressure to have the surgery?  I wasn’t ready.  I was 28 years old and still nursing my son.  I was 28 years old and my life as I knew it was taken away from me, because I let it happen.

A counselor suspects that I was not fully unconscious during the surgery.  It takes more anesthesia to put me to sleep.  Based on my hallucinations I was having months after the surgery, the counselor suspected I was conscious enough to know something bad was happening to me, but I couldn’t move to stop it.  The surgery was done through my vagina to minimize having to cut through the abdominal wall.  Honestly, the only descriptive word I have after the surgery is that I was raped. That is what my brain was telling me.  I felt such shame from the ordeal.

I spent four days in the hospital.  My uterus was removed.  It wasn’t damaged.  The surgeon felt I would blow out all the repair work if I got pregnant again.  A hysterectomy was part of the procedure.  I had two inches of my rectum removed due to prolapse.  I had a bladder neck sling inserted and my bladder moved back in place.  My large intestine now sits in a jumble on my bladder. It was not stapled back into place, because sections would have had to be removed and my doctor could not determine which the healthy sections were and which the damaged sections were.  I have extensive nerve damage on the right of my body.  I do not have access to the muscles on the outside of my thigh, but I have managed to keep my muscle size in each of my legs equal.  My right leg gets tired faster than my left leg.  My piriformis muscle is also damaged as well as my sciatic nerve. Both get pitched from time to time due to my bones still moving.  At the time, eleven years ago, I was told the only things holding my body together anymore were my muscles and my bones.  My ligaments and tendons were shot.

I had lived a healthy lifestyle all my life.  Currently, I have been a runner for over 20 years. Eleven years ago, I felt my body had betrayed me.  My urologist told me that what happened to me only happens to 60 year olds.  How could it have fallen apart like it did?  It would be years later that I realized it was my body that kept my son alive despite the damage.  It held on for as long as it took.  My body was not my enemy.  It had saved my son’s life.  It was because I had lived a healthy life style that made my body strong enough to hold together when everything was falling apart.

The L4, L5, and S1 segments of my back were also tightened, but the doctors did not tell me that they had operated on my back until after I got home.  The pain from my back was what made me feel like I was dying.  It is an awful thing to find out you can’t tolerate narcotics after you have had a major surgery.  Anything with Codeine, such as Vicodin, causes the muscles in my lungs to spasm and I can’t breathe. Percocet does nothing for the pain, does not make me sleepy, and causes hallucinations.  My doctor’s solution to the pain medicine problem?  I was to take Tylenol.  Tylenol doesn’t work at all.

I was so angry all the time.  I didn’t want to be touched.  I was hallucinating.  Something was wrong.  I knew I needed help.  Six months after my surgery I was diagnosed with PTSD.

He wanted me back to normal, at least pre-pregnancy normal.  I wasn’t well physically or mentally.  He didn’t seem to care.  It would take me three days to clean our 940 square foot apartment, because I hurt so much.  It wasn’t good enough.  Him: “Why weren’t the clothes put away?”  Me: “But they are folded, can’t you put them away?”  Him: Shakes his head in disappointment.  I was expected to maintain my wifely duties.  It didn’t seem to matter how much I hurt.  I was scared of him, but I wouldn’t realize how scared I was until years later.  Emotional abuse is hidden in plain sight.  The target may not even know what is happening to them, especially if the abuser is passive aggressive about it.

Confusion, gaslighting, lies, putdowns, coercion, silencing, and isolating their target, this is what emotional abusers do.  He told me that he was going to leave me if I didn’t have the surgery.  He told me I was broken years after the surgery. I felt I was damaged goods, no use to anyone.  I was trapped and no one was hearing me.  They would tell me how great he was, such a hard worker, that I needed to give him a break because he was so stressed and tired.  What about me?  My “voice” was being disregarded and ignored.  I was expected to take care of the kids, so I did.  I had to be the responsible parent.  They are the reason I didn’t give up.  I was never suicidal, but I did want to die.  I wanted the physical and emotional pain to end, but I was not going to leave my children without a mother.

I clawed my way out of that pit of hell.  I started to rebuild myself.  The person I had been died on that operating table.  I had to start over.  I was in my early 30s.  Being developmentally delayed, I didn’t reach my teenage years until this time.  I started fighting back.  I was not going to be silenced anymore.  A few years later I would be diagnosed with Autism.  He could never accept my diagnosis.  The abuse got worse and he left three years later.  The kids have no contact with him.  It has been a year.

Emotional abuse is a horrid thing, but people don’t see it, because the scars are on the inside.  You can read more about my experience with emotional abuse here – Invisible Scars – A Tale of Emotional Abuse and with grief here – Grieving.

I cried the whole time I have been writing this.  It is almost 1AM and my fingers are still moving across the keyboard, being my conduit where my own voice has failed me.  The volcano has awoken and it wants to be heard.  I need to tell my story, but I don’t know if my words convey the pain I feel.

My condition has continued to deteriorate.  I have never fully recovered from my son’s pregnancy. Three years ago it was determined that my large intestine was shutting down.  I faced the real possibility of having to have my entire colon removed.  Luckily a new medication had come out that has enabled me to continue to go to the bathroom.  The tendons holding the right side of my diaphragm has deteriorated and two years ago I was told that my muscles were the only thing holding my body together any more.  My bones are essentially floating around in my body.  Pain lives with me.  I don’t know what it feels like not to have pain.

I am haunted.  Haunted

He hurt me.  They hurt me.  They are still hurting me and they don’t even know it.  They wouldn’t let me grieve after my surgery.  She told me it was just an organ, what was the big deal?  I was more than an organ.  I was more than a baby maker.  I already had two beautiful kids, what was a matter with me?  Get over it.  Did you ever think that this was something that was supposed to happen?  These are all things she told me.

Pregnancy scares the shit out of me now.  It is a huge trigger for me, as well as everything about it, but people don’t seem to understand.  I am supposed to show happiness when someone announces a pregnancy, but I can’t. I begin to panic instead.  I can’t shop for baby things, I can’t attend baby showers, and it is a big struggle for me to talk about baby things.  I am told I am being ridiculous, rude, and cold, but that is not true at all.

The problem is, even though pregnancy terrifies me, it also was something I can’t really explain.  It was something wonderful.  How can something so wonderful terrify me so much?  Another thought that I can’t shake is that I felt I wasn’t alone when I was pregnant.  I don’t understand this thought, but it has stayed with me all this time. The only reason I can think for this thought is it is a result of the abuse I sustained.

I endured 15 years of an emotionally abusive marriage and didn’t realize what was happening to me.  I knew something was wrong, but the abuse was committed in a way that left me feeling lost and confused, and I couldn’t get people to believe me when I tried to talk about it. He wore masks.  He had his public persona and his family persona.  He could be very charming one moment and the next it seemed like there was a stranger standing in my living room.  He might as well have been punching me daily, because that is how it felt, but I could never pin point exactly what was wrong.  He used this against me.  He said everything was fine and said it was in my head.  He would give me the silent treatment and refuse to want to try to resolve any dispute. He would brag about how we never fought, but all couples fight.  It wasn’t healthy.  Our marriage was toxic.  The pressure would build and I would have a normal reaction to an abnormal situation.  It was always my fault, at least to him.  Everything wrong in his life was my fault.  Nothing I did was ever right in his eyes and he kept changing the rules.

Then the cheating started, this was after I was diagnosed with Autism.  My Autism became an easy scape goat for him.  He used it to explain away his erratic behavior.  It was because I was such and such and it was because I needed such and such.  After my diagnosis I began to learn to create healthy boundaries.  I was advocating for myself and the kids.  I had started to overcome my codependency, he did not like that.  He told me I was being belligerent.  I could never understand what he meant by that, and when I would ask, he said I would get loud.  I don’t remember that.  If I did get loud, it was out of exasperation, not out of anger.  He never was able to read me correctly, always misinterpreting my emotional states.  You were not permitted to express emotional states in front of him, unless it was calm, happy feelings, because all other emotional states made him uncomfortable.  My son’s counselor once described my ex-husband as emotionally flat lined.

I had married a man that was emotional unavailable, but it wasn’t like that in the beginning.  He told me he pretended to be someone else to get me to marry him.  When the mask came off, he acted like he was the center of the world and I had to honor anything he wished.  I tend to be overly trusting and he took advantage of that fact.  He liked that I was loyal to him, maintained the house, took care of the kids, and I always waited for him to come home.  I had to let him do what he wanted when he wanted to.  I was not supposed to put any request on him, no matter how benign, because it would be an assault on his freedom.  At the time I did not understand any of this, because he was passive aggressive about it.  This came out after he was required to have a full psychological evaluation by the kids’ counselor.

I felt utterly stupid for staying with him for as long as I did, but I had a trauma bond with him.  Trauma bonds are very difficult to break.  The reason he gave me for why he didn’t want to be married anymore was because he didn’t want the responsibility of a family anymore.  He didn’t want to have to make choices.  It was after this that I discovered the other women.  I understand now that he never really loved me, though, I think he thought what he felt was love.  I don’t think he ever really knew who I was.  He was too busy projecting himself on to me and punishing me for things I never did.  He is a very sick person, I feel bad for him, and I wish I could say he was completely out of my life.  Unfortunately, you don’t always get what you want.  He is still triggering me through emails and letters.  I am still scared of him.  There are definitely PTSD symptoms when dealing with my ex-husband.

PTSD

I was conditioned to marry a man like him.  I was an easy target for him.  I was 23 years old when we met.  I was young, naïve, and unbeknownst to me, also a codependent.  I learned to be a codependent from childhood, but I am breaking free of that.  Looking back at the ones who raised me, she always made excuses for him and we were to not upset him. You learned really fast never to show pain or cry in front of him, because he would yell.  He yelled all the time and was emotionally distant. We were scared of him.  She was passive aggressive and emotionally abusive, but she didn’t realize it.  She still is that way.

She kept expecting me to be like her, a mini-me version of her, but I am not.  I am me and no one else.  I have my own passions, fears, and desires.  I am uniquely me.  She once told me, after I found out I was autistic, that she thought I would never be able to live independently, but she never said anything.  She just pushed me on to men and wanted me married off.  It didn’t matter how hard I had worked to gain my independence (which I did, by the way).  I had to be married off.  She never did that with my younger sister nor did she push my younger sister to have kids like she did me.

She wanted grandkids, and when I was engaged, she started pushing us to have kids before we were ever married.  We waited, though.  After my divorce, she told me she did not trust my ability to make good decisions regarding the kids.  She demanded that I move into a camper trailer on their property that was three hours away so she could look after the kids.  I fought back this time.  I was not going to let her use guilt and shame on me again.  I was stronger this time.  I was not going to tuck my tail between my legs and run away.  She had expected me to do that, because that was what she would have done.  She got mad at me when I refused.  She told me this herself.  Again, she is still thinking I am like her when I am most definitely not.

I had been the primary caregiver of my children since they were born.  I was the only reason my children were getting the medical care and educational assistance they needed.  The kids’ counselors told me that they wished more parents were like me, informed, involved, and I didn’t keep my children in the dark as to why they were receiving the care they were.  My children have been an active member in their own care for some time now, because I understood and accepted them for who they were early on and I helped them understand and accept themselves as individuals. Yet, I wasn’t trusted by the one who raised me to know how to care for my own children.

When I was little, it was drilled into my head that I had to be responsible and had to protect my younger sibling.  I was only two years older, but I did my job, because rules are rules.  I had to be the responsible one.  I was the one who told them she needed to be on birth control.  I was the one who discovered she was skipping school.  Why was all this my job?  Isn’t this a parent’s job to be aware of these things?  No one made sure I had access to birth control.  I had to ask when I knew it was time for me to be put on them.

There is a reason I felt I had known him all my life when I had only just met him.  I grew up surrounded by his type of behavior.  It was all I knew, so I tolerated it, made excuses for it like I had learned growing up, and it ended up destroying me.

I know I should feel very fortunate to have what I have and I do.  I have two amazing children.  Both my kids survived being born and I am not in a wheel chair.  I know if I had gotten pregnant again, and if I was able to make it to term (and that is a big “if”), I would most likely have been paralyzed.  I should be grateful, and I am, but I can’t shake these awful feelings.  The feelings of guilt, shame, regret, the feelings of betrayal, jealously, anger, and fear, oh, the terrifying, debilitating fear. It won’t go away and I have tried so damn hard to get through it, to process it, to let it go.  It won’t let go of me.  What is wrong with me?

A few weeks ago, my sister announced that she is pregnant with her first child.  The announcement triggered me so badly that I essentially went into hiding.  The announcement sent me into a terrible flashback.  I was back at the hospital.  It was happening all over again and I couldn’t stop it. The panic attack over whelmed me and I kept having panic attacks for days afterwards.  I can’t talk to any of my family members out of fear.  My younger sister is having baby, the sister I was always supposed to protect growing up.  I should be happy for her, but I can’t be.  I need to be there for her, but I can’t be.   I am going to be an aunt, but I can’t be involved no matter how much I want to.  How frigging screwed up is that?  It makes no sense at all.  Not. One. Bit.

I don’t want to hate myself anymore.  I am tired of it.  I want to live my life without feeling haunted.  I want to be free.  I just want to be free.

My fingers have slowed down now.  I think I am coming to the end.  I started writing when it was almost midnight, because I couldn’t sleep and the words were clawing to get out.  It is now 1:30AM.  I feel some relief now, perhaps I can finally sleep.  Perhaps the volcano has finally made itself heard.   I know I still have a long way to go, but perhaps my spirit can be free after all.

Can you hear me? I am here and I will not be silenced! I will be free!

Spirit

(Original art work from fantasy artist Josephine Wall )

**Note:  All images not given credit were licensed for reuse with modification.