I Can’t Anymore . . .

NOTE: I feel that this writing is lacking, but I am struggling right now and needed to write and release it out in cyber space in order to reduce the build up of emotions inside of me.  I feel there needs to be a trigger warning, but I am not sure what to warn about. There is mention of depression and the thought of wanting to die, but please understand that I am not in any way suicidal. My hope is that this writing may help someone else that is also going through a difficult situation. Now, deep breath . . .

I can’t. I just can’t anymore. I feel so done with everything.  I know I am grieving again, but a person can only take so much emotional turmoil in their life.  I don’t want to have to start over again.  I have done this so many times before.  I don’t feel I have the energy anymore, but I will carry on.  I always do.  I will continue on, but tonight as I type this, I don’t want to.  I am so tired of it all, the pain, the heartache, the feeling of loss.

Oh, gosh, the pain, always with the pain. I am not just talking about physical pain.  I have a lot of that. My body has been degenerating, well, for as long as I can remember.  Ehlers-Danlos Syndrome will do that to you.  What is hurting me more right now, what is gouging at me, is the emotional pain. Physical pain takes a huge emotional toll on a person, but the lack of emotional support from loved ones makes it almost unbearable.  It is so bad that you want to die.

Do I want to die tonight? No, but I want to give up.  Everything I have been fighting to hold on to for almost 20 years is disintegrating right before my eyes.  It might be an archaic idea, but I am the type that bonds for life.  Unfortunately, I bonded with a man who doesn’t hold these same views.

I have written a lot about this man’s behavior over the past several years. It was a way for me to process through the grief and here I am again, grieving over another lost dream.  A dream of a new future, a new start with this same man who I naively thought shared the same dream as I did. 

I was wrong. His lifestyle choice seems to be more important to him than his own family and our relationship.  It is so frustrating.  I know this man loves me and he loves his children, but he is clueless when it comes to doing what is necessary to maintain a healthy relationship. 

There is a pull to be angry, but why? I have been there before many times.  It is an emotion a person needs to go through when processing things, but one needs to work past the anger.  Sadness and loss is what I feel tonight.  Sadness and loss is what I am familiar with when dealing with this particular man.  I guess tonight this sadness and loss is filled with more answered questions, then unanswered.  At least I have that.  For too many years I did not even have that, which only led to high levels of anxiety. 

Tonight, what I feel is depression and the knowledge that I have done all that I can. It is all on him now.  I fear that this is where it will finally stop, my ongoing effort I mean.  For nearly two decades I have tried and tried, but I can’t anymore.  There comes a time when there is enough evidence to show that you have hit a dead end, because you have done all that you can and still have gotten nowhere.   

I have been through so much in my life, so much crap. I have Complex-PTSD because of it, layers of trauma over many years. I am the autistic one, the person whom others have claimed has no empathy, no feelings, and has been called a robot and stuck up, but have also been told I am too emotional and too sensitive. Well, which is it?  You can’t be too emotional and too sensitive, but also lack empathy and feelings.  It doesn’t work that way.

I can tell you with all honesty that I have extremely strong empathy, so much so that it hurts. I have a very hard time separating what I feel from those I am around, particularly those who I care about. I might just not express it in ways that the general population may expect.  I feel it all, though.  I can’t seem to filter it out, just like I can’t filter out sensory input.  It is all bombarding me at once. 

I am a textbook autistic person. I say what I mean and mean what I say.  There is no hidden message and there is nothing written between the lines. I am a blunt and honest person who adheres to the virtues of integrity and honor.  I am also loyal and trusting, much to my own peril.  As a friend of mine once said, people like she and I seem to have a target on our foreheads, because of how we are. 

Where I come from, non-autistic people seem to be the ones who “lack empathy”, at least they seem to be this way towards others who don’t think like them. This same man that I have been referring to has come to some realizations as of late. 

My basic needs are not the same as his. It has taken him a very long time to come to realize this.  How I express my happiness is also not the same as his way as well as what makes me happy is not the same as what makes him happy.

More on this here —-> I am Real, I am Human, and I Feel!

I do not understand why he would have so much trouble understanding this, but he is still struggling with this whole concept.  This non-autistic man seems to be only able to see the world through his eyes, yet I am the one who is said to be lacking in “theory of mind”.  No, I am not lacking in “theory of mind”. I am just different.

——————–

This is my blog that I wrote in July 2013 entitled “Theory of Mind – The Debate Continues” .

Here is Rachel Cohen-Rottenberg’s blog entitled “A Critique of the Theory of Mind” .

And Ariane Zurcher’s blog entitled “An Empathic Debunking of the Theory Of Mind” .

——————–

How do I deal with all of this? I practice mindfulness.  From What Is Mindfulness? :

“Mindfulness means maintaining a moment-by-moment awareness of our thoughts, feelings, bodily sensations, and surrounding environment.

Mindfulness also involves acceptance, meaning that we pay attention to our thoughts and feelings without judging them—without believing, for instance, that there’s a “right” or “wrong” way to think or feel in a given moment. When we practice mindfulness, our thoughts tune into what we’re sensing in the present moment rather than rehashing the past or imagining the future.”

I suppose my writing is one way for me to practice mindfulness. Before I started typing tonight I felt like my life was imploding.  The life that I wanted is basically over and I just couldn’t take it anymore.  After putting myself in the moment and allowing the emotions I was feeling to come out in written form, I am starting to feel the pressure that was building up inside me subside.

Deep breaths .  .  . I will not give up. I will get through this. 

Hear My Battle Cry  (A poem I wrote.)

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”

― Martin Luther King Jr.

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Seeing the Truth in Patterns

“To understand is to perceive patterns.”

-Isaiah Berlin

Patterns can be beautiful and calming, even sensuous. Patterns can also be ugly and painful. When you have very strong pattern recognition, you see patterns everywhere and in everything. “Connecting the dots” is just something that comes naturally to someone like me.  Whether it is patterns in tile or how leaves grow on a stem or human behavior, I recognize patterns.

This is why it frustrates me so much when others do not see the patterns staring right into their faces, especially when it comes to human behavior. How can you not see the pattern?  It is right there in front of you, why can’t you see it?  Is this a choice on your part or do you really not see it?

I wonder if it is just too painful for those who do not see the patterns of human behavior. Recognizing the pattern would mean that they would have to accept it for what it is and that is something that they cannot bring themselves to do. The truth can hurt.  Maybe this is why I hear “give him/her the benefit of the doubt”  and “let’s just see what happens” even though there has been years of evidence that shows a very clear pattern of behavior.

In Human Behavior Patterns (The Laws of Probability), Joseph “Joe” Panek states:

Isn’t it interesting how we, as human beings, Choose to Perceive Patterns? On one hand, we Choose to recognize some Patterns for what they Truly are. While on the other hand we Choose to analyze other Patterns until we become confused and dizzy.

For example: we know that the sun rises in the east; we know that if we let something slip from our hands it will fall to the ground; and we know that if we plant a petunia Seed it will grow into a petunia flower and not an oak Tree. We understand, and accept these natural Patterns as Truths and facts and we hardly, if ever, ask “Why?”.

However, when it comes to Human Patterns (Human Behavior) we take an entirely different stance or attitude; we automatically look for, and attempt to dissect, the “Why?” of the situation and casually Ignore the fact of the situation.

Why is this so? Why do we accept nature’s Patterns for what they are yet refuse to accept Human Behavior Patterns for what they are …a Pattern?

Since our earliest childhood society, and all of its factions, groups, and organizations, has Instructed us to recognize things for what they are.

Yet this same society has, on the other hand, Indoctrinated us to give people the “benefit of doubt”, at the expense of Truth, when it comes to their Behavior Patterns.

We have been trained, mostly through Guilt, to Forgive and forget when we should be taught to be Aware and understand.

For Awareness and understanding are our most reliable allies. A person’s past is a testimonial to their future. If a person is a liar or a thief, this is what they are. There is no “sugar coating” of these facts. Yet, how many of us blindly give these individuals the “benefit of a doubt” only to rue our Decision and cry out “Why?”.

I was reminded again today that not everyone is willing to “connect the dots” when it comes to human behavior. It was a painful and disappointing reminder to me, because even someone like me who sees patterns everywhere still chooses to not see the truth for what it really is.  I am human with a scientist brain and I have this incredible need to understand.  I ask “why?” all the time.

Humans are messy. There are so many patterns that don’t make sense.  I ask “why?” and the answers that are given often frustrate me or confuse me more.

  • Why does he keep hurting me?
    • This person has a tendency to not clue into my feelings and doesn’t notice a problem until it is too late.
  • Why doesn’t my family see me for who I am?
    • I am so much more than what they want to see.
  • Why have I had to fight for so long to be able to be me?
    • I have worth and I matter.
  • Why is my “voice” not being taken seriously?
    • Please hear me.

I am told I am just supposed to accept things for how they are and move on, that this is how things are done and how people are and there is no wavering from that. I can’t just blindly accept a pattern of behavior that doesn’t make any sense.  Just because something has always been a certain way does not mean it has to always remain so.  That is a choice to stay like that; to remain behaving in such a way that it continues to hurt people as well as yourself.

After finishing writing that paragraph above, I find myself asking another “why?” question.

  • Why am I writing all this?
    • I have been seeing a pattern for a long time and I have not wanted to see the truth in it. 

Autistic people are commonly overly trusting and have very strong loyalty. I am no different.  I stay and continue to be hurt.  I have remained loyal even though the trust had been shattered.  I still don’t know why I did that and continue to do so.  Over the past year he and I have been working on trying to glue that trust back together, but it remains cracked and fragile. I made a choice to give him the benefit of the doubt even though there had been an accumulation of years of evidence showing a pattern of behavior that was very questionable. 

In the above paragraph I wrote, “I can’t just blindly accept a pattern of behavior that doesn’t make any sense. Just because something has always been a certain way does not mean it has to always remain so.  That is a choice to stay like that; to remain behaving in such a way that it continues to hurt people as well as yourself.”  Yet here I am in the same questionable situation again where I am emotionally hurt on a regular basis. I have chosen to be here.  I am the one who has the pattern of behavior that doesn’t make any sense.  

truth-budda

Again, another “why?” question:

  • Why have I done this?
    • Because I listened to my heart instead of my brain. I wanted my family back. I wanted the man I loved back.

Emotions are funny that way. They blind you to the truth. I can rationalize his pattern of behavior all I like, I did it before my trust in him was shattered, but it doesn’t change the fact that the emotional pain continues.  Does he love me? Yes.  Does he mean to hurt me? No.  As I stated before, he is not conscious of my feelings and still doesn’t understand triggers, or the need to feel safe, or why it is so important to me to have my feelings validated.

He has chosen to not have pattern recognition when it comes to people.  It makes him visibly uncomfortable to discuss matters of human nature.  He doesn’t seem to want to be aware of what is happening around him. He just wants to live his life his way and be shut off from the world.  Unfortunately, he has a family that doesn’t fit into his way of doing things. My children and I are very much part of this world and do not want to be cut off from it.  This means I have a difficult choice to make – Do I stay silent, or keep pointing out patterns of behavior hoping to get somewhere, or just leave all together?

I don’t have an answer to that question at this time.

All I see is the pattern and it worries me.

“To Ignore Human Behavior Patterns, along with the Laws of Probability associated with these Patterns, is to subject ourselves to a lifetime of continual victimization. And if we Honestly look at the personal tragedies of our Past, we are likely to discover that they are the result of the people we allow into our lives and the obvious Behavior Patterns we Choose to Ignore.

For, in the end, whether we Choose to accept this fact or not, a Pattern is a Pattern is a Pattern”

– Joseph “Joe” Panek

**Image found at http://funzypics.com/board/pins/387/28592

Personal Responsibility, Self-Advocacy, Education, and Support

On November 26th I wrote about Finding Hope. That writing was part of my Wellness Recovery Action Plan (WRAP) that my Peer Support Specialist is helping me put together.  The “hope” portion was only the first part. There are four other concepts to this writing that I needed to figure out what their meaning was to me.  These remaining concepts were easier for me to write about than writing about “hope”, but my writing didn’t turn out like I thought it would.  Instead of separating these last four concepts out, I ended up combining them all in a long narrative. 

It has taken me years to write my story. A bit here and a bit there. So much struggle.  So much pain. When I was first diagnosed with PTSD, it was recommended to me to get my story out to help with my healing process, but I just couldn’t.  This is why it has been so difficult for me to conglomerate every thing that has happened to me.  I made an attempt in June of 2015 to combine everything up to that point when I wrote The Volcano is Awake. I cried writing it.  It reads choppy, but it seems every time I try to write my story that happens.  I am still trying to heal. Healing takes time and how that healing plays out is different for everyone.  My ability to write to the point at which I have is quite an achievement for me, because for so long I couldn’t even do that much. 

In this second part of putting my WRAP together, I was faced with determining what personal responsibility, self-advocacy, education, and support meant to me. As I stated before, I was not expecting my writing of these concepts to turn out like it did. I am not sure what that means, per say, but I think it demonstrates where my processing of things are, where my focus is, and where I am in my struggle to heal.

So, here it goes. Some of this writing is repetitive information from past blogs, some of it is not. This is me putting my story out explaining my ongoing journey to wellness.

I am stretched quite thin and have been for some time. My responsibility to others, particularly my family and students has led me to neglect my own self-care.  The one thing that I promised myself when I was 18 years old was that I would run as often as I could and I have kept that promise through two difficult pregnancies and countless injuries.  I have always lived an active healthy life style, even when I was a child I was active.  I have strived to keep my body strong and healthy and it has served me well. 

I was born with a congenital condition that has been slowly destroying all my connective tissues. My body cannot produce enough collagen to bind my cells together properly.  The only way to be diagnosed with this condition currently is by keeping track of years of injury, and just not any injury.  I am talking about joint injury, bleeding and bruising problems, and organ prolapse.  I have a long list of injuries and surgeries that a person my age with long history of living a healthy lifestyle wouldn’t expect to have.

During my high school years, just prior to my first surgery, I was told by my doctor that if I let myself get out of shape I would lose my ability to walk. My joints were already that lose and dislocating. At 27 years old, after the birth of my second child, I was told that the only thing holding my body together anymore were my bones and muscles.  At 38 years old, I was told that only my muscles were holding my body together anymore.  I am currently 41 years old and my bones are now essentially floating in my body. It doesn’t take much for them to move out of place and cause considerable pain.  It also doesn’t take much to injure myself.  Just doing everyday things can cause me to end up with an injury that lays me up for days or weeks. I have to be very conscious of how I move my body.  I have to keep my upper body always aligned with my lower body and that is not an easy thing to do.    

I have been in physical therapy eight times since I was 14 years old. I have been told to stop running for years, but I refuse. My physical therapist doesn’t even try to tell me to stop running anymore.  He says now that, yes, running is hurting me, but it is also keeping my body strong, which is needed to hold it together.  

Running is also good for my mental well-being. There are days when I go running in the woods and scream at the trees.  I cry. I shout. I let everything out.  By the end of my run I feel tired, but purged of all that stress in my head that was tearing me apart.

I also write. Writing has become my “voice”.  Through the encouragement of another teacher who saw an ability that I didn’t realize I had, who was also a mother of an autistic son and a blogger herself, I found my “voice” for the first time in my life. I was 36 years old at the time I received my Autism diagnosis, which was after both of my children were diagnosed.   I was never taught how to be an advocate or to even how to advocate for myself, but as a parent and a teacher, I figured it out on my own.  Finding my “voice” only empowered me further. 

I now write two blogs, I have a Twitter account, and I run three public Facebook pages plus my private Facebook page. I am also a Founding Member of ANUE (Advocates for Neurodiversity and Unique Empowerment).  ANUE has become primarily an online support and resource group, but there is an option to have face-to-face meetings.  I am in contact with people all over the world through the internet and have meant some really amazing people.  

Would it be better for me to have more contact with people face-to-face?

Yes, I do believe it would, but my situation does not allow for that, so over the last four years I have created a large social network online. It has been a life saver for me, but in times of crisis, more face-to-face support would be better.

Becoming an advocate was not something I decided one day to become. I wanted to be a teacher since I was seven years old. I struggled with the decision of becoming an Art Teacher or a Science Teacher for years, but in eleventh grade I took my first Geology class, and that was my deciding factor.  I was going to become an Earth Science Educator and I did. My dream was to teach science in a public school setting and I did accomplish that.  I have been a certified teacher for 18 years, but I have not held a certified position in four years.  Due to my declining health and responsibilities to my family, my children in particular, I am no longer able to work in a classroom on a daily basis.  I still teach, however, just in a different way than I had originally planned.  This is where becoming more of an advocate comes in.

I went back to graduate school four years ago with the goal of earning a Master’s degree in Science Education. My passion lies in Science and I wanted to continue working in the field of Science Education.  Unfortunately, as always, life happens when you are making other plans.  My marriage collapsed unexpectedly two months into my program.  It was devastating, but I had to carry on for the sake of my children and for myself. 

I managed to make it into my second year of grad school and it was at this point when I began to realize there was a problem. Due to my executive function problems, I needed accommodations to get through the certain classes. My classes were mostly online and the university was in Montana with the requirement that two lab courses had to be completed on campus.   I live in Washington State. The University felt they could not provide the accommodations that I needed to be successful.  I had to make a choice, struggle through knowing that I would eventually fail or transfer into a different University all together.  I decided to transfer to Lesley University in Cambridge, MA. 

My experience with Montana State University and my experience as a teacher, a parent of two children with a variety of disabilities, and with ANUE showed me that my focus needed to be placed where my untapped strengths were pointing me toward, I am a teacher and an advocate and I needed to focus on Autism Education. Lesley University follows Universal Designed for Learning Standards.  Basically, an accommodation that is good for one person is good for all.  The accommodations I needed were already in place and I didn’t even have to ask for them. My experience at Lesley University was amazing and I finished in two years with a Master’s in Education with an Autism Certification.

My hope with getting a Master’s degree was that it would open more doors for employment with the ultimate goal of becoming self-employed. I even have started my business online as an education consultant and tutor.  I have not been able to really focus on it, however, due to the circumstances that my family is currently living in and my own mental health.  Once things start to calm down and become more stable, I fully intend on developing my business more.

Self-employment, a livable house, a place that I can call home, these are all important goals, but I think the biggest goal I have is to be finally able to heal. I have Complex-PTSD and I am in autistic burnout.  I keep pushing and pushing myself each day just to get through.  I am tired of trying to survive. 

I WANT TO LIVE!!

It is going to be a rough ride, though, to actually reach that point of stability where I can actually reach my goals. My support team is going to be such a pivotal importance in the coming years.  

Who are these people who will be that much needed support?

I am so used to struggling on my own. It was how I was raised.  I grew up with very little to no support, particularly in the emotional support department. My emotional needs were essentially ignored. This was very difficult for an undiagnosed autistic child who struggled with debilitating anxiety mixed with depressed states who didn’t have the words to express how she felt nor did she understand those feelings.   I was often told by my parents that their job was to provide clothing, food, and shelter. That was basically it.  I had to learn to make it on my own.  My marriage was like that as well, very little to no support, even during my darkest times in my life.  That situation is improving, however, but very slowly.  

It took me a long time to get myself to a place where I would actually ask for help. I was just so used to being told “no”, that my “voice” didn’t matter, that my needs didn’t matter.  I am more disabled that I even am able to acknowledge to myself, and it is disheartening, but I know I have worth and that I matter. It has been quite a journey getting to the point where I can say that.

I HAVE WORTH!!

I MATTER!!

So, who are these wonderful people who I could turn to for help?

I created a Mind Map to sort that all out. Doctors and counselors (for both my children and I), local friends, online friends, ANUE, immediate family members, fellow teachers and advocates, my pets, there are actually a lot of people and critters listed, expect for my extended family members. My hope is with time the bubble for Other Family Members will grow, but at this time it is not possible.  My parents basically disowned me for reasons I won’t go into here and I am unable to really speak to my sister for reasons that are too painful to discuss right now.  When it comes to learning about the effects of trauma and learning how to adjust my life due to my physical and neurological disabilities, I am a knowledge junkie.  I devour knowledge.  I am forever learning and I have a skill when it comes to researching.  I can find information relatively quickly and present that information in a manner that is easy for others to understand.  I am always looking for answers and new pathways to follow whenever I hit a roadblock in my journey through life.

I am still looking for the pathway that will allow me to get to a point where I can actually live and not just survive. I hope that day will come sooner rather than later.  I am tired, so very tired.

Hear My Battle Cry

Here I am sitting at my lap top again trying to find words and at the same time I am listening to “Battle Cry” by Imagine Dragons.  I am in a battle now, a battle to just hold on, to make it through, and to survive.  Life shouldn’t be this hard.  How did my life get so hard? I will not give up, though.  I will keep fighting. This is my battle cry!

Hear My Battle Cry

I will make it through!

I will survive!

Hear my battle cry!

 

I may be hungry.

I may be cold.

I may be in pain.

 

But, I will make it through!

I will survive!

Hear my battle cry!

 

I may feel hopeless.

I may feel lost.

I may feel alone and isolated.

 

But, I will make it through!

I will survive!

Hear my battle cry!

 

My body may be taxed.

My mind may be flooded.

My spirits may be shattered.

 

But, I will make it through!

I will survive!

Hear my battle cry!

do-not-give-up

Finding Hope

NOTE:  This blog was originally written as a journal entry for my Peer Support Specialist as part of my Wellness Recovery Action Plan.  It reads somewhat choppy, but I wanted to share it nonetheless.  My children have given me permission to share their medical information as long as I don’t use their names.

(Trigger Warning:  Reference to suicide, emotional abuse, and trauma.)

“Hope is the life force that keeps us going and gives us something to live for. Hope is a crucial part of dealing with life’s problems and maintaining resilience in the face of obstacles. Even a glimmer of hope that our situation will turn around can keep us going.” – Joe Wilner (How We Lose Hope and How to Get it Back)

The word “hope” is defined as a feeling of expectation and desire for a certain thing to happen. I sit here staring at my computer monitor trying to think of things that bring me hope. Where is that feeling of expectation and desire for a certain thing to happen?  I seem to be lacking it.  I am in full-on survival mode and have been for some time. The feeling of hope seems to not be in the equation for me.  

I sit here reminding myself it has been bleak before, I mean really bleak. Bleak to the point where I didn’t want to live anymore.  I was never suicidal, I just wanted the physical and emotional pain to end and I only saw death as a way to finally escape it all.

What kept me going?

My responsibility to my two young children is what kept me going. I refused to leave them without a mother.  They were only a baby and a toddler at the time and they had a father who wasn’t always around and grandparents who only wanted to involve themselves on their terms, which was limited. 

This all happened years before I was diagnosed with Autism, years before we knew both my children were also autistic, and years before realizing my daughter also had Bipolar. Medical trauma, grief, chronic pain, post-partum depression, family neglect, emotional abuse, isolation, lack of a proper diagnosis, lack of support from anywhere lead me into the worst autistic burnout I have ever experienced and without a proper diagnosis I had no idea what was happening to me.  I thought I was losing my mind.  I was diagnosed with PTSD during this time.  This diagnosis would eventually grow into Complex-PTSD.  

I have experienced burnout many times since, but never to the extent of how it was during those very dark, dark days of my late twenties/early thirties. Unfortunately, I am finding myself horribly burnout out again, more so than I have been in a very long time.  I am 41 years old.  My daughter will be 16 next month and my son will be 14 two months after that.  One October night in 2012, my world once again began to fall apart.  My husband, whom I had been with since 1998, sat me down and told me he didn’t want to be married any more, he didn’t want the responsibility of a family any more. 

Things continued to get worse and worse. My husband was self-destructing from a life-long struggle with untreated severe clinical depression and he was taking the family down with him.  I will not go into detail of the three years of hell that my family went through over this, but I will say that my son developed PTSD from emotional abuse by his father.  My daughter grieved like her father had died, yet there was a stranger walking around with his face. 

Fast forward three years, my husband finally agreed to get professional help and has since come home. We have spent the last year trying to rebuild our family.  Five months ago we moved to a very isolated area with dream.  We would build a house together and start our new life as a family, all four of us together.  Unfortunately, life happens when you are making other plans. 

We have been living in what can be described as a glorified shed with tarps for walls. It is the end of November. We have no plumbing or insulation. What electricity we have comes from heavy duty extension cords that are plugged into the meter outside and drugged into the house. We can’t run much on them or we end up popping circuits.  We do have a wood stove, but with no insulation, it can only keep the house just below 50 degrees Fahrenheit, the bedrooms are even colder.  We are miserable.

Due to unforeseen financial problems over the last few months, who knows yet when we will have plumbing. My in-laws’ house is about a football field’s length away. We utilize their kitchen and plumbing. They are very caring people, but their house is small and they are very elderly.  My mother-in-law has had two strokes, is diabetic, has blood pressure problems, and needs round the clock care which my father-in-law provides.  Their house is very unpredictable and stressful.  It is hard to explain, but no one can handle being in their house for more than a few hours. We are looking at another six to eight more months without plumbing. It realistically could be longer than that.

Even though I call my husband “my husband”, we are not legally married any more. He made sure of that during those three years of hell.  He recently has informed me that he doesn’t know what makes me happy and he doesn’t know how to meet my needs when it comes to our relationship.  That really hit me hard. After all these years, he still doesn’t know how to be a husband to me (he has admitted that he has sucked at being a husband and father), but there is a positive note to this.  He wants to learn and he is listening.  Progress has been at a snail’s pace, though, painfully slow, but for the first time he is putting in real effort. He is committed and is determined to make our relationship work.   

Then there is my employment situation. I have been a certified teacher for 18 years in grades Kindergarten – 12th grade.  The 2011-2012 school year literally almost killed me with stress.  Over the past four years I have slowly been transitioning myself away from working a daily teaching job.  I can no longer physically or mentally continue working every day and also care for my two children who cannot attend a regular school day at a school.  They are both homeschooled, but are also enrolled in our local Home Link program, and my daughter receives her education services at our local high school by attending only mornings Monday – Friday. 

I finished my Master’s degree last April. I now officially have the credentials to say I am both a professional in Autism Education and a Science Teacher, yet I am still under employed and I don’t see how that is going to change anytime soon.  As of now I have five invisible disabilities:  Autism, Generalized Anxiety Disorder, Ehlers-Danlos Syndrome, Complex-PTSD, and Dyscalculia.  I struggle everyday with chronic pain, Misophonia, anxiety mixed with depression, and I struggle to live in a world that is not designed for someone like me. I have been on ten different anti-depressants, five different anti-anxiety medications, and three different sleep aids.  I have tried a variety of pain medications as well.  I have paradoxical effects with all these types of medications. Nothing works for me and only makes things worse.

My medication is running. I have been a runner for 23 years and I fight every day to stay out of a wheel chair.  Due to the continued degradation of my connective tissues all over my body from Ehlers-Danlos Syndrome, it is only a matter of time before running may be taken from me. I have already had to give up weight lifting, backpacking, mowing, gardening in other than large pots, picking boxes up, moving furniture, the list keeps growing every time another injury occurs or another body system begins to fail. I carry on, though. I just brace up my joints, bind up my torso, and continue to persevere.  I have to, but it gets harder and harder when the feeling of hope just isn’t there. The chronic pain wears you down.

With all of this, I am still struggling in thinking about what brings me hope.

The first thing that comes to mind as I have been typing all this out are the two young people who kept me going before when I found myself horribly burned out, my two children. They are everything to me and I am determined to persevere above all odds for them, always.

I have been told by my own mother that she would never be able to do what I do. If it had been her raising my children instead of me, my daughter would have been sent away a long time ago. As for my son, his needs would also have been ignored just like mine had growing up, because he is so “high-functioning” in my mother’s eyes.  Neither my son nor I are “high-functioning”, but we are quiet enough to be easily ignored.

Both my children have Dysgraphia and both are autistic (my daughter as an accompanying expressive language impairment and my son does not).

My daughter was also diagnosed with Bipolar II (but it may instead be Schizo-affective Disorder – Bipolar Type) with debilitating anxiety. She takes six type of medication either once, twice, or three times a day depending on the type. We have alarms set to help her remember to take her medication. She has been hospitalized once for suicidal thoughts and hallucinations telling her to use knives to kill herself.  

My son was also diagnosed with Generalized Anxiety Disorder, Panic Disorder, Agoraphobia, and Social Anxiety as well as Misophonia. He also struggles with re-occurring depression. He takes two types of medication once or twice a day depending on the type. He has been on suicide watch twice.

Then there is the glimmer of hope that comes when I look in my husband’s eyes now and see the man I married in there. In his eyes I see an older, tired, and struggling version, but I see hope there, too.  He sees a future for us, a future that I thought we had lost that one October night when he decided to give up on me, our family, and the life we had. 

I have not reached the same point where he is, but I want to.  This place where we live now is where he grew up.  This is his world, but it is not mine.  This is why I am not at the same point where he is.  This world is so foreign to me.  The language is different, the mannerisms are different, the way of life is different, and I am cut off from my world due to our rotten living conditions.  No internet and all my belongings, my tools I use to self-regulate and make my environment safe and comfortable, are all locked up in storage.

My senses have been on overdrive since moving here. Everything is too loud and too bright. It hurts here.  Then there is the problem of my husband’s recent poor choices haunting us.  During those three years of hell he involved himself with four women in ways he shouldn’t have.  One of these women he purposely used to rip our family apart and my children and I caught him with her. Neither had feelings for each other, which just made it worse for me.  This woman ended up marrying my husband’s first wife and they both show up at my in-laws’ house on a regular basis. They are also both invited to family gatherings, gatherings we can’t go to because of their presence.  I am reminded of my recent trauma and loss all the time.  I can’t get away from it. This has taken a considerable toll on me.

“Though, when we begin to lose hope, things can seem bleak. When we run into constant resistance and are prevented from reaching our goals we can start to feel like there is nothing to live for. If we can’t get to where we want to be and don’t feel in control of our life, what’s the point?” – Joe Wilner (How We Lose Hope and How to Get it Back)

I have been finding myself asking, “What’s the point?”

What is the point? Why do I keep going when all there seems to be is endless struggle and pain?

The answer:

Because I must!

My life would be very different if I had been dealt a different set of cards. I know this, but there is no point in lamenting over that fact. I was dealt a certain set of cards and I have to live with what I was given and make the most of it. 

Over the years, I have written a lot about persevering and not giving up. I have to keep on fighting.  I have to keep moving forward.  I have to keep trying to reach that light at the end of the tunnel.  When I was at my darkest all those years ago, I kept telling myself that the tunnel will end and light will be reached again.  I knew it would happen, because that was the only option available.

I am there again telling myself that this dark, burned out tunnel that I have found myself in will eventually end. It has to.  I don’t know what I will find when I reach the light again.  My life may once again be transformed into something I wasn’t planning on, but at least I will be there to see that transformation. 

I will persevere. I will keep moving forward.  I will keep on keeping on.  That is the only option I have. 

 

Perhaps that is where my hope really lies, by keep on keeping on . . .

 

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”

― Martin Luther King Jr.

The Story of the Liberal and the Conservative and the Need for Consensus . . . . .

Ah, politics. In the United States, our current presidential election race started in March of 2015. Here we are, 19 months later, and the presidential election is almost over.  The general election is November 8, 2016. With only one more week to go until the 45th president is determined, many in the United States are bracing for the end of this very long, very frustrating, and very bizarre presidential race.

Those in my house have wanted all this turmoil to end some time ago and there is a very good reason for this. We have a unique situation in my house, so I am going to digress from my usual talking points and discuss this unique situation. 

My husband is a conservative and I am a liberal. You can probably imagine the arguments we get into.  Finding middle ground is considerably difficult, especially on issues where our passions are very strong.  Then mix in the fact that I am autistic, which inherently leads to social and communication difficulties on my part. My husband is not autistic, but he does have his own form of communication difficulties.  He struggles with expressing himself effectively, particularly when it comes to issues where emotions are involved.

Two people living under the same roof with opposite views when it comes to which direction this country should go. We basically want the same thing, but it is in the “how” that we differ. This “how” comes from how we see the world. Basically, our perspectives, our values, and what we feel is really important. The different ways that our brains are wired, and our ongoing difficulties to effectively communicate with each other, cause a lot of tension in our house, particularly when it comes to political issues.  

Student News Daily breaks down this conundrum of Liberals vs. Conservatives:

We all want the same things in life. We want freedom; we want the chance for prosperity; we want as few people suffering as possible; we want healthy children; we want to have crime-free streets. The argument is how to achieve them…

Liberals believe in government action to achieve equal opportunity and equality for all. It is the duty of the government to alleviate social ills and to protect civil liberties and individual and human rights. Believe the role of the government should be to guarantee that no one is in need. Liberal policies generally emphasize the need for the government to solve problems.

Conservatives believe in personal responsibility, limited government, free markets, individual liberty, traditional American values and a strong national defense. Believe the role of government should be to provide people the freedom necessary to pursue their own goals. Conservative policies generally emphasize empowerment of the individual to solve problems.

NOTE: The terms “left” and “right” define opposite ends of the political spectrum.  In the United States, liberals are referred to as the left or left-wing and conservatives are referred to as the right or right-wing.  On the U.S. political map, blue represents the Democratic Party (which generally upholds liberal principles) and red represents the Republican Party (which generally upholds conservative principles).

Many times when a person hears the word “conservative” they tend to think “Republican”. This thinking also applies to the word “liberal” being connected to “Democrat”.  In my house this is not the case.  I am an Independent.  I am not affiliated with any political group.  My husband leans towards the Libertarians.  He doesn’t agree with everything that is on the Libertarian Party platform, but he agrees with the general idea of their platform – limit the government and leave us the heck alone so we can make choices for ourselves!

From the Libertarian platform Preamble – “As Libertarians, we seek a world of liberty; a world in which all individuals are sovereign over their own lives and no one is forced to sacrifice his or her values for the benefit of others.”

The simple definition of individualism is “the belief that the needs of each person are more important than the needs of the whole society or group”. That might work for some people, but not for me.  I feel if we are going to be able to have equality and equal opportunity for all then the federal government has to play a big role in accomplishing that.  Again, this is just my view.  There are many that feel that individual states should have more rights over what happens within their borders and that there is too much overreach by the federal government. That is their view and they have that right.  I fight for social justice, so this idea of individualism and autonomy over the needs of the whole society is counter intuitive to my desire for a healthy society for all.

According to Don Young, a healthy society has some underlying values:

  • The economy is an integral part of any society; the economy of a healthy society is governed by democratically developed principles.
  • A society should be judged in terms of the well-being of all its members.
  • A healthy society protects the weak while creating opportunities for the strong to flourish; it respects the cultures and human rights of all sectors. The dominant culture of a healthy society promotes co-operation and collaboration as checks and balances on competitive forces.
  • A healthy society needs robust laws and their fair enforcement, as well as creatively governed autonomous institutions that function to promote well-being. It uses law both to deal justly with those who cause harm or threaten the peace, and to protect freedom of expression and assembly.

When it comes to the Republican Party, I have voted for Republican candidates in the past, but never for president. I cannot in good conscious go along with the current Republican platform.  I feel the current party leaders are trying to take this country backwards, not forwards. 

Then there is the Green Party and the Constitution Party. Nope, not for me. The Green Party is too far left and the Constitution Party is too far right.  I think I am more a centrist that is leaning more to the left side than the right side when it comes to the political spectrum.

This is why I currently find myself leaning towards the Democrat platform. I don’t agree with everything that is on this platform, but the current Democrat platform is focusing on the issues that are important to me.  My passions lie in equality and equal opportunity for all, including marriage equality, separation of church and state, health care for all, education (supporting public schools), disability rights, maintaining a woman’s right to choose, science, and the environment – a very much liberal type of platform.

My husband is very much a gun enthusiast, very much a proponent of the constitution, very much supports individual freedoms. Any sense of infringement on these hot-topic issues causes considerable emotional outbursts. This is where his passions lie. There is nothing wrong with this. I support people defending their passions and expressing their feelings.  The problem is that any talk of services that everyone is required to take part in order for all to have access, any talk of gun legislation, and any legislation that could be construed as potentially impeding individual freedoms causes a lot friction between the two of us.

I think society as a whole needs to be addressed and he feels individualism is more important than society.

The story of the liberal and the conservative and the need for consensus . . . . .

From Don Young in What makes societies healthy?:

Poisonous Parties

In both the UK and the US, government is dominated by two political parties. Historically, political parties grew their strength out of their members, primarily at local and regional levels. The rise of mass media, the 24-hour news cycle, and the take-over of party leadership by ambitious men (and a few women) with little or no local regional roots have fundamentally changed the parties. As the party system is not underpinned or constrained by either broad based memberships or any effective collaborative frameworks, they have become largely representative of special interests. This is a tragedy, because as each party’s base becomes narrower and less diverse, the processes of government are more and more bent to serve the interests of the powerful at the expense of the whole people.

Party funding in the UK and the US

The Conservative Party is nearly entirely funded by finance, industry and super-rich individuals; and the Labour Party by trades union bosses supposedly representing their members. Both parties have lost the bulk of their grass-roots memberships. Few members of Parliament have had any significant careers outside of Westminster; their leaders are largely drawn from much the same small pool of party interns and graduates of elite schools or universities; with women’s and ethnic minorities’ barely represented. Membership subscriptions have become insignificant, and both parties rely on special interest donations. Smaller parties seldom get a real chance of attaining power. The electoral system also prevents a wide range of interests from being represented. Britain’s current attempt at coalition government has been characterised by internal conflict and increasingly poisonous relations between the Liberal Democratic party and the right wing of the Conservatives. The Labour Party is now in conflict with union bosses, who believe that their members’ subscriptions should give them the right to appoint Labour Party candidates for safe parliamentary seats. The small regional parties merit barely any attention on the national scene, and the three major parties each face a nation with large geographical areas where they are barely to be seen.

In the United States, Republicans and Democrats seem to be fighting to the death in Congress, preventing most legislative action, even that which could be beneficial to the nation as a whole. The Republicans in particular, are in thrall to extremist forces that oppose whatever the President and his party proposes. In effect, the government is paralysed. (Highlighted for pertinence.)

The prevailing politics in both the UK and US, funded by massive lobbying interests and powerful commercial institutions, has become a negation of democracy. The interests of the rich and powerful trump the common interest. This has become evident to the wider population, who have lost trust and faith in politicians, big business, big unions, and in particular investment banks, hedge funds, private equity houses, and other financial institutions.

The consequences

As a consequence, it is almost impossible for political parties to come together to agree on issues of extreme national importance. Even when they might agree in principle, many politicians emphasise differences to satisfy increasing number of extremists who make up the rump of party membership. There are no powerful counter-weight institutions to bring together the interests of the work force, business, and regions. The result has been serious economic decline and a widening of the gap between the privileged and the less fortunate. Without national consensus, especially about the nature of a healthy society, it is hard to see how either Britain or America can re-build healthy societies with economies and public services that support the interests of all. (Highlighted for pertinence.)

So, here we are in the United States, trying to find consensus in a world where our government has become paralyzed. It is difficult to navigate such a world, especially when you find yourself living with someone who is politically opposite you and you live in a part of a state where you find yourself the minority when to comes to political matters.

I fear the outcome of this current presidential election. Due to obstructionism and extremists, it doesn’t look good one way and looks even worse the other way. I prefer one candidate over another for very specific reasons, but with everything that has been happening in this country, the world as we knew it under President Obama’s eight years of leadership is over and I don’t do well with unknowns.  

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)