Category Archives: Emotional Abuse

The Destructive Nature of Passive-Aggressive Personality Disorder

**NOTE: this blog did not turn out as I thought it would. I thought it would be more about depression and grieving, but it ended up being about Passive-Aggressive Personality Disorder, which is what inevitably caused my depression and grief by being the target of the person with the disorder.  My brain went analytical while writing this blog. A lot of technical jargon ended up being included, but in doing so, I feel a sense of relief now.  I actually feel calmer.  Writing is a coping strategy of mine and I never really know where it will take me or how my blogs will turn out.  

Trigger Warning: References to emotional abuse and emotional neglect.

********

Ah, depression. It punches you in the face, drains you of energy, and makes everything harder in your life.  Now, mix depression with grief and it is that much worse.  In my case, the punch in the face is my depression telling me that I wasted the last 19 years of my life. 

Haven’t I been here before? Unfortunately, I have. It was when he first left me.  He came back three years later claiming he had gotten his life together and I gave him the benefit of the doubt.  I let him back into my life and the kids did as well.  It was never real, at least not in the sense that he wanted a committed long term relationship again where we could be a family once more.  I was just a means to an end, a person to have around so he wouldn’t feel lonely. What I needed didn’t matter.  Only his self-absorbed interest did.  

I want to tell him that he is an obstructionist, never allowing anything to work, never putting in the necessary time, and always blocking any attempts to make things better. There was a time I thought I just wasn’t good enough. Then it moved into thinking that we just hadn’t found the correct course of action.  I now understand that the reality was and continues to be his abusive passive aggressive personality. Our relationship never had a chance. 

As Millon (1981, p. 258) describes:

The passive-aggressivé s strategy of negativism, of being discontent and unpredictable, of being both seductive and rejecting, and of being demanding and then dissatisfied, is an effective weapon… with people in general. Switching among the roles of the martyr, the affronted, the aggrieved, the misunderstood, the contrite, the guilt-ridden, the sickly, and the overworked, is a tactic of interpersonal behavior that gains passive-aggressives the attention, reassurance, and dependency they crave while, at the same time, allowing them to subtly vent their angers and resentments.

I wasted all those years holding on and fighting to make our relationship better while I was being blamed for all that was wrong in his life, being told that it was because of how I am that was the problem (he never could really accept my diagnosis), and being emotionally beaten down time and time again by underhanded and conniving ways.

With me it was always “no” from him. No matter what I did or what I said, it was always “no”. He would never be direct about the “no” either.  It was always done in a covert, underhanded way.  The gaslighting, the procrastination, the ambivalence, the obstructing, the stonewalling, the projection, the derailing, the manipulation, the dishonesty, and the unwillingness to resolve anything mixed in with “I love you”, “you are my best friend”, and “I want to share my life with you”.

I want to tell him that what he called love wasn’t actually love. I want to tell him that love is a promise. Love is an action. Love is something you work on and maintain all your life, but love is subjective when it comes to a person.  How one person sees/feels love may not be the same as how another may see/feel love.

I want to tell him that insisting on living in that sea of ambivalence of his is no safe haven, but it will do no good. He feels safe there, riding the fence, never having to make a decision and to never having to take responsibility for a decision made, but a non-decision is still a decision.  

Individuals with Obsessive-Compulsive Personality Disorder (OCPD) and Passive-Aggressive Personality Disorder (PAPD) share a deeply rooted ambivalence about themselves and others. While people with OCPD resolve their ambivalence by compliant behavior and holding tension within, those with PAPD have virtually no resolution. As a result, they are characterized by vacillating behavior. They are indecisive; they fluctuate in their attitudes, oppositional behaviors, and emotions. They are generally erratic and unpredictable (Millon, 1981, p. 244).

The erratic and unpredictable behavior in an individual with passive-aggressive (negativistic) personality disorder is incredibly frustrating. These individuals tend to be ambivalent within their relationships and conflicted between their dependency needs and their desire for self-assertion. They present hostile defiance toward people they see as causing their problems and then attempt to mollify these same people by asking forgiveness or promising to do better in the future, or always asking for more and more time (as was in my case).

Individuals with PAPD view themselves as self-sufficient but feel vulnerable to control and interference from others (Pretzer & Beck, Clarkin & Lenzenweger, eds., 1996, p. 60). They believe that they are misunderstood and unappreciated, a view that is exacerbated by the negative responses they receive from others for their consistent defeatist stance. They expect the worst in everything, even situations that are going well, and are inclined toward anger and irritability (Beck & Freeman, 1990, p. 339) (DSM-IV, 1994, p. 734).

As the one who has been on the receiving end of this anger and irritability, it was the silent kind of anger filled with resentment and sometimes it was even the “sugarcoated hostility” variety. It was never expressed to me directly, however. You can’t have a direct conversation with a person with Passive-Aggressive Personality Disorder and nothing ever gets resolved, so the tension just builds and builds until there is an explosion.  Unfortunately, the target of the passive aggressor is typically the one who explodes and it is usually due to the fact that the passive aggressor has tried and may have actually succeeded in sabotaging your wants, needs, and plans using a variety of tactics.

According to Darlene Lancer, JD, MFT,  passive-aggressive people act passive, but are covertly aggressive. “Their unconscious anger gets transferred onto you, and you become frustrated and furious. Your fury is theirs, while they may calmly ask, “Why are you getting so angry?” and blame you for the anger they’re provoking.”

I am getting clinical here. I need to take a step back.  Maybe my analytical mind is taking over as a way to cope with the emotional pain I feel.  I am dealing with the reality that I let it happen again. I let the emotional abuse happen again.  My brain is telling me that I had to try for the family’s sake.  I had to give him another chance for the sake of the  It’s almost like they do it on purpose, isn’t it, Fred?!children and I had to find out for myself. 

I found out alright. I found out that our family cohesion was the priority of my children and me, but it was not his. He has always had trouble balancing his life out, including balancing prorities.  My children and I were often left on the way side as he lived essentially two lives, his apparent family life where he kept to himself mostly and his life outside the family where he didn’t have to worry about family responsibility.  He presents out to the world as this very charming, friendly, and personable man.  He is “The Nice Guy” to everyone else, but me. 

I was the one who received all his negative characteristics. He seemed to only be nice and charming to me when he wanted something. He is very good at doing just enough to hook you, and then the push/pull behavior starts. He is a very avoidant person. He prefers to be alone, but does not like being lonely.  He wants someone around, but only on his terms.  Don’t ask for any emotional reciprocity, because you are not going to get it, but you better always be encouraging and dependable for him and not cause him any drama or turmoil.  In other words, do not disrupt his Zen or he will punish you by giving you the silent treatment, ignoring your needs, isolating you, or sending you mixed messages to keep you off balance.  

Sounds childish, doesn’t it? It sounds this way, because it is childish. Passive-aggressive people are not pleasant to deal with at all.  I am not going to go into the reasons as to why a person would develop Passive-Aggressive Personality Disorder other than to say that the exact cause of passive-aggressive behavior isn’t known.  If you are interested in learning more about possible causes you can click here, here, and here.

A personality disorder is not a mental illness, so it cannot be treated with medication. Only through therapy can a person work though and learn how to cope with living with a personality disorder.  Unfortunately, if a personality disordered person doesn’t feel that there is a problem, then there is really nothing you can do.   You can’t help those who do not want to be helped, I learned that the hard way, but there are ways to help yourself when it comes to dealing with a person with Passive-Aggressive Personality Disorder.  Here is a list of some of the ways that I have learned over the years:

  1. Be assertive (this might take some practice.)
  2. Don’t nag (which very hard to do when your patience is frayed).
  3. Don’t be an enabler by tolerating the behavior (that only encourages more passive-aggressive behavior).
  4. Create healthy boundaries and consequences if those boundaries are crossed.
  5. Be aware of your own reality. This is covert emotional abuse and you may not even realize it is happening.
  6. Be honest.
  7. Walk away if the situation feels like it is just spinning in circles.
  8. More often than not, you will have to remove yourself from the passive aggressor for your own self-preservation.

I wish I could remove my ex-husband from my life entirely, but we have two children together, so that is not something that I can accomplish. My children are currently both in high school. In just a couple years of each other, my children with be considered adults and the mandatory child support that he has to pay will end as well as any visitation schedule.  My hope is that I will be able to remove him from my life as much as I can when that time comes.

More blogs that I wrote on this matter:

Seeing the Truth in Patterns (Posted on December 27, 2016)

I Can’t Anymore . . . (Posted on February 20, 2017)

Closing Doors . . . (Posted on March 14, 2017)

Letting Toxic People Go

**The articles linked in this blog reference the DSM-IV.  The DSM-V came out in May of 2013. Certain diagnostic criteria changed in the DSM-V, but the information contained in the articles is still relevant. The images are not mine and are sourced.

I Hate Complex-PTSD

(Trigger Warning – Discussion about Trauma)

I hate Complex-PTSD. There is no way around it, I hate it.  I got triggered today.  All it took was for me to be sent spiraling was for me to notice that a relative of mine had changed their profile picture on Facebook.  It was a completely innocent thing for them to do.  There was nothing wrong with the picture that my relative chose, but for me, it was enough to trigger a cascading effect of interacting layers of trauma that I have accumulated over the years.

Complex Post Traumatic Stress Disorder (C-PTSD) is a condition that results from chronic or long-term exposure to emotional trauma over which a victim has little or no control and from which there is little or no hope of escape.”

C-PSTD can occur in such cases of:

  • domestic emotional, physical or sexual abuse
  • childhood emotional, physical or sexual abuse
  • entrapment or kidnapping.
  • slavery or enforced labor.
  • long term imprisonment and torture
  • repeated violations of personal boundaries.
  • long-term objectification.
  • exposure to gaslighting & false accusations
  • long-term exposure to inconsistent, push-pull, splitting or alternating raging & hoovering behaviors.
  • long-term taking care of mentally ill or chronically sick family members.
  • long term exposure to crisis conditions.

How did I get to this point? I grew up in an emotionally neglectful and abusive household.  I married what I knew and the covert emotional manipulation and emotional abuse only got worse.  I have also been taking care of mentally ill family members for over 16 years now.  Then there is the medical trauma I endured 15 years ago that resulted in my initial diagnosis of PTSD which eventually grew to C-PTSD when more and more layers of trauma were exposed.

Post-Traumatic Stress Disorder (PTSD) and C-PTSD are similar, but they do differ in causes and symptoms. C-PTSD results more from chronic repetitive stress from which there is little to no chance of escape. PTSD can result from single events or short term exposure to extreme stress or trauma.

***Remember, C-PTSD is a stress disorder, not a weakness or defect of character nor is it a personality disorder although it is often misdiagnosed as Borderline Personality Disorder.

From The Center for Treatment of Anxiety and Mood Disorders:

CPTSD Symptoms

People who have gone through a long-standing, extremely traumatic situation may exhibit both physical and emotional symptoms related to their ordeal.

Emotional symptoms may include:

  • Rage displayed through violence, destruction of property, or theft
  • Depression, denial, fear of abandonment, thoughts of suicide, anger issues
  • Low self-esteem, panic attacks, self-loathing
  • Perfectionism, blaming others instead of dealing with a situation, selective memory
  • Loss of faith in humanity, distrust, isolation, inability to form close personal relationships
  • Shame, guilt, focusing on wanting revenge
  • Flashbacks, memory repression, dissociation

Victims of C-PTSD may also have physical symptoms, such as:

  • Eating disorders, substance abuse, alcoholism, promiscuity
  • Chronic pain
  • Cardiovascular problems
  • Gastrointestinal problems.
  • Migraines

From Out of the Storm:

Symptoms Shared by CPTSD and PTSD

According to Cloitre et al (2016), CPTSD shares three main symptoms with PTSD which include:

  • Re-experiencing the past – in the form of nightmares and flashbacks.  While in PTSD flashbacks tend to be visual, in CPTSD they are often emotional.  That is,  a sudden, overwhelming rush of emotions such as anger, shame, humiliation, abandonment, and of being small and powerless much like a child would feel when abused.  These are referred to as Emotional Flashbacks (EFs). and can last for minutes, hours or even days (Walker, 2013) . 
  • Sense of threat – constantly on guard or hypervigilant, strong startle reaction
  • Avoidance – of thoughts, feelings, people, places, activities relating to the trauma (e.g., dissociation, derealization)

Symptoms of CPTSD Only

Cloitre et al (2014) suggest that CPTSD differs from PTSD in that it has three additional symptoms:

  • Emotion regulation – Emotional sensitivity; reduced ability to respond to situations in an emotionally appropriate and flexible manner  
  • Negative self-concept – Feeling of worthlessness and defectiveness. Walker suggests that those with CPTSD suffer from toxic shame and have a virulent Inner and Outer Critic.
  • Interpersonal problems – Difficulty feeling close to another person; feeling disconnected, distant or cut off from other people (depersonalization, social anxiety). 

Everyone is unique and the above list of symptoms is not complete and not everyone with C-PTSD will exhibit all the symptoms listed. I, for one, do not have the physical symptoms of “Eating disorders, substance abuse, alcoholism, promiscuity”. There was a time I wanted revenge, but I couldn’t stand that feeling and fought hard against it. Revenge never solves anything and can ultimately destroy the person seeking revenge. I have wanted to die, but I have never had suicidal thoughts.  I also have never been violent, destroyed property, nor committed theft. I do not have cardiovascular problems, but I do experience chest pain during anxiety and panic attacks. I have had to establish healthy boundaries and am no longer in contact with certain family members beyond an occasional email.  I also never lost my ability to form close personal relationships with others.

What makes experiencing all this worse for me is that things that trigger me are typically seen as happy moments by most people, so there is little to no understanding as to why I cut myself off from exposure to reminders and why an unexpected exposure to a photograph of my happy sister, her happy husband, and her new baby affected me so badly.  I didn’t experience anger seeing that photo.  I was terrified!  Pregnancy and children birth reminders are horrible, panic inducing triggers for me. The reason for this is my medical trauma resulted from me being pregnant and giving birth.  I am not going to go into detail, but more information can be found here and here.

I got triggered this morning by a reminder of that horrific time in my life that was my medical trauma, the lack of emotional support I experienced from my family and continue to experience, and all the loss I experienced and continue to experience.  That one trigger not only triggered me regarding my medical trauma, but every  emotional trauma after it. There is a lot.  As I stated before, I was in an emotionally abusive marriage and came from an emotionally manipulative and neglectful home life that followed me into adulthood.    

It is 11:31PM now. I am still struggling. I have been crying off and on all day, but most of my crying was this morning.  How have I coped?  I used music and running.  I let myself ride the melody and lyrics of specifically chosen songs and played them over and over again.  I let the music flow through me and let the emotion flow with it.  I had to.  No more pretending.  I am safe now.  I don’t have to hide my anguish anymore. I have to let my pain out, but I have to do it in a health way.  I have been a runner for 24 years.  Running helps me regulate my anxiety and helps me control my meltdowns.  Running is not for everyone, but it is a way for me to help ground myself when the whole world feels like it is collapsing all around me like it did today.

My theme song today was “Total Eclipse of the Heart” by Bonnie Tyler.  I felt this song fit with how I was feeling and how I wanted to express myself, because I had no words, just tears and pain.  (Lyrics) 

After my run tonight I found myself still feeling lost. The song I needed to listen to was “Send me an Angel” by Real Life.  (Lyrics)

I have been waking up lately with this song playing in my head. I wouldn’t mind at all having an angel sent to me right now with some guidance and emotional support. Days like this are so hard, but they do eventually get better.  I just have to keep moving forward.  A better day will come.  

 

 

Closing Doors . . .

What do you think of when you hear the word “commitment”? What about the phrase ‘being committed to something or someone”?  What comes to mind then? I have found that the images are different depending on the individual.  Please realize that deeply caring about someone is not the same as being committed to them.  I was reminded of this when a certain person in my life decided to tell me he was committed to me; it was just a different kind of commitment according to him. Then later on he proceeded to tell me that he deeply cares about me and wants to be in a relationship, but he is not committed to me.  Confused yet?

I have been dealing with this same person for nearly 20 years. This is the type of confusion that he continuously created when ever commitment came into question.  At first he says the right words and acts like he really means what he says, but after he gets what he wants, his effort is finished and the sabotaging begins.  This is what someone who has commitment phobia does.  They want a relationship, but they also want space and freedom.  They can be loving, attentive, and very charming, but at the same time passive aggressive and emotionally neglectful.  Their sabotaging begins subtly, but then gets worse and worse over time.  They are not proud of their behavior and actually feel guilty, but it doesn’t stop them.  They are governed by fear, lots of fear. 

A phobia is an extreme or irrational fear of or aversion to something. Commitment phobia is a very difficult thing to deal with, especially when you are the one on the receiving end of the behavior.  In my case, for 15 years this person tried to hide their phobia and denied their depression and problematic personality features.  The problem with this is that it all will eventually bite you in the ass in a very big way.

Our family was torn apart by the action of this person. It has been four and a half years since the big bite happened and he subsequently left us.  He came back after three years after a psychological evaluation and had started counseling.  He stopped his counseling shortly after returning home and for the past year and a half we have been slowing rebuilding our family unit, but unresolved issues arose.

I haven’t really written in the past month, because certain revelations have been happening and I needed time to process it all. Slowly I have been trying to chip away at all the layers in an attempt to deal with these unresolved issues.  Talking ensued, lots of talking. What was finally revealed lead me to one conclusion – he has commitment phobia. 

How does one even develop something like that? To answer that question, you would have to divulge into why any phobia developments and the reasons really depend on the person.  In this particular case, I can honestly say that this person had a lot of baggage prior to meeting me.  Our various problems that we faced as a married couple just added to the mix of things he really didn’t want to deal with.

This whole idea of commitment phobia is something that I am having trouble wrapping my head around. I am a very committed person, always have been.  I am also a very loyal person, almost to a fault, which has led to me being taken advantage of.  I don’t know if these aspects of me are derived from being autistic or if they are simply aspects of who I am regardless of anything else.

In The Discovery of “Aspie” Criteria by Attwood and Gray, under “A qualitative advantage in social interaction, as manifested by a majority of the following”, number one states “peer relationships characterized by absolute loyalty and impeccable dependability”. Yup, that is me.

I am a loyal, dependable, and committed person. I am known as someone who doesn’t give up and am always looking for solutions and new paths to follow when I encounter a road block of some sort.  I am also someone who establishes strong bonds with people and have been known to be overly trusting way too many times.  Keep in mind that not every autistic person is overly trusting, but I am one of them that is.  I am also naïve even after being on this planet for 41 years.  Perhaps this is due to me being developmentally delayed, but I can’t say for certain.

Rules are rules to me and that includes rules in a relationship. You don’t cheat, you don’t play mind games, you are honest and open, and you are there for each other. This allows for trust to build.  Trust must be earned.  It took me so long to learn that.  I give way to many chances when it comes to people.  I don’t know why I do this, but after being hurt so many times I finally took it upon myself to learn about the importance of personal boundaries.

I was never taught about boundaries growing up. I also was never taught how to say “no”.  I was taught to comply.  Perhaps that plays into why I give too many chances, but I can’t say for sure.

I have been told in the past that I am too kind, that my heart is too big, and that I must have a lot of patience. I have been told that these aspects of me allows people to take advantage of me, to take advantage of my heart, which only leads to the heartache that I have experienced many times.

I married a guy who is basically a douche, but tried to hide that fact, because he really did and still does love me. The thing is, apparently love is not enough to keep someone from being unfaithful, being neglectful, and emotionally abusive. This is why all these years I have been so confused and so hurt.  Why would you tell someone you love them over and over again, tell them you want to marry them, make future plans with them, have children with them, spend nearly 20 years with them, and then systematically destroy it all?  It boggles my mind.

For four and a half years I have been hanging on unable to move beyond the shattered remains of my life I once had. For a moment I thought I was getting it back.  Everything felt so right.  We were a family again, but it was short lived.  The man I bonded to can’t commit.  All those hurtful things he did happened because he couldn’t commit and the lie he had been living finally caught up with him.  Instead of being honest with me, he used emotionally abuvise tactics to destroy our marriage so he didn’t have to be the one who initiated the divorce proceedings.  Something I had to do. 

Here we are again. He didn’t want to look like the bad guy, so he has been sabotaging repair efforts and I don’t know how much of his behavior he is even aware of.  Ingrained behavior is difficult for a person who is demonstrating the behavior to actually see that they are doing it. Denial is something he is very good at.

About three weeks ago I felt something emotionally close in my heart. At that time I learned that my ex-husband wants the benefits of the family he loves, but not the responsibility and commitment that comes with it. As these revelations were coming out, my ex-husband also started talking about not wanting to look like the bad guy by ending our relationship a second time.  Go ahead, if you haven’t already, start shaking your head at me and make disapproving expressions.  I know, I know. Déjà vu all over again except without the infidelity and abandonment parts. 

I have taken these last few weeks to process this feeling of something closing in my heart and trying to figure out what this sensation was about.  I have come to the conclusion that it was a door closing, so to speak.  This feeling was something new to me and I have had difficulties determining what it meant. 

For four and a half years I have been unable to move on. Too much hurt, too much anger, and too many unanswered questions.  I think that feeling of a door closing in my heart means I am ready to take those first steps onto a new path.  It still hurts, but the pain is different this time.  I have found that I have too much self-respect to continue on this roller coaster of a life that my ex-husband lives in. My children and I have had to lower our expectations to such a low point so we can be pleasantly surprised when he does a nice thing or he does what he said he was going to do.  It is ridiculous that we have to do this, but we have to take care of ourselves.  There was just too much disappointment and hurt that was happening.

My ex-husband was given a second chance to make things right. Instead of working with me to find middle ground and nurture our relationship and our family, he has chosen to dig himself in and not budge.  Working towards middle ground means commitment and that is something he is just unable to do.

I don’t regret giving my ex-husband a second chance. I had to find out.  I had to take the chance.  I needed questions answered and I needed to know if we could really be a family again.  I got my answers. The result was not what I expected or wanted, but I got what I needed.  I got what I needed in order to finally move on with my life.  As the Rolling Stones song goes:

You can’t always get what you want

But if you try sometimes well you might find

You get what you need

The Rolling Stones – You Can’t Always Get What You Want – Lyrics

In closing, I raise a glass of your preferred beverage to what the future may bring. May it be a bright future indeed.   Blessed Be.

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.

Dealing With Emotional Abuse in Families

(Trigger Warning: Personal Experiences Discussed)

Families.  What makes a family?  What does it mean to be a family?  What does it mean to be emotionally supportive? At what point do you say that you have had enough? At which point do you have to walk away for your own protection?

These are loaded questions and not something that can be easily answered.  These are questions that I have been grappling with lately.  Well, to be honest, I have been grappling with these questions for some time now.

What brought me to this place, a place where I am finding I am at a loss as to how to even address these questions?  It first started when I realized I had been in emotionally abusive situation for some time and it had been coming from several directions.  One direction had been from my husband who was crumbling from a lifetime of untreated mental illness.  The situation he was in is not an excuse for his behavior, but it is a fact that his refusal to acknowledge that he was mentally ill contributed greatly to his inevitable decline and eventual self-destructive behavior.  He had to lose everything and stay there for a while before he realized what was really important to him, me and our two children.  The ordeal that led up to a three year nightmare eventually had a happy ending.  He finally got help and eventually came home.  He moved back in five months ago.

We are a family again. During that three year-long nightmare, I questioned if he really was part of the family anymore.  He didn’t want to be, or it appeared that he didn’t want to be, but he was still genetically connected to our children and we had 15 years of marriage together.  You also don’t have to be genetically linked to be family.  Was he still considered family?  In the end, the answer to that question was a resounding “Yes!”  Surprisingly, our bond survived all that destruction that had taken place over those three years.  The love was still there.

In many other cases, the situation is so bad that there is no more love, only abuse and pain.  I don’t know why I held on to hope that my ex-husband would eventually have an epiphany and would find his way home.  You could say we got lucky, but there was more to it than that.  We are determined to make this work.  We are taking the necessary steps with family counseling and working on our communication skills.  We are still going through the healing process, still figuring our roles as a family of four. It is going to take time, but we are on a positive path to recovery.

My daughter asked recently what love was.  I told her love is when you don’t give up on someone. For us, this statement is true.   I never gave up on the man that I married even when he had given up on himself.  Please understand, not giving up on someone is not the same as walking away. I had to walk away and give the man I loved the time and space he needed to figure things out.  You can’t help someone who doesn’t want to be helped.  Sometimes you have to walk away.  In our case, it worked out.  Unfortunately, much of the time it does not.  You have to move on; otherwise an emotionally abusive situation could potentially destroy you.

I wrote more about emotional abuse —> Invisible Scars – A Tale of Emotional Abuse

I am facing the question of walking away again.  I had to put up a healthy boundary in regards to three family members in my life.  This occurred almost a year ago.  I had to do this for my own mental wellbeing, for my own protection.  I have Complex-PTSD and last June I had the worst trigger I have ever had apart from a medical trauma that led to my diagnosis of PTSD in the first place twelve years ago. I know they didn’t mean to cause me such harm, but it was through their lack of understanding that led me to being is so much pain.  I couldn’t stop the flashbacks.  I was back in that hell again.  I could hardly function for days.  It was a horrid experience.  You can find more about that experience here —> The Volcano is Awake

For more information on my experience with Complex-PTSD —> The Hell that is Spring

When I tried to explain to these families members what had happened and why I had to have the healthy boundary, I was met with “I thought you were over this.” and “I am so angry at you right now!” and “Don’t you care how your sister feels? You hurt her feelings.”  Ya, it wasn’t pleasant. I was so full of guilt and pain, but it didn’t seem to matter to this person. They just dumped more guilt and pain on to me.  These comments were made by one person out of the three.  One of the others hasn’t communicated with me for a year now and the third is keeping a respectful distance.

It hurts to even discuss this.  How can person get mad at another for having an excruciating panic attack that lasted for days?  How can a person who claims that they have unconditional love for another end up throwing guilt on to them during their most vulnerable moments? I was told that I was wrong to feel the way I did. A person has no right to tell another how they are supposed to feel.  I don’t understand it.  I don’t understand the behavior and this has been happening to me for as long as I can remember.

This week I was told I had a fevered brain by this same person.  When I asked for clarification, I did not receive any.  I have been told I am full of anger, hatred, and disdain.  I have been told that my words are full of vitriol and that there is a disconnect between what I write and how I perceive it.  I don’t understand where this is coming from.  I am not full of anger or hatred or disdain.  What I do feel is sadness, frustration, and fear.

My blogs reflect my journey through loss, grief, healing, and self-discovery. It is natural to experience anger as you go through a grief cycle and everyone is different when it comes to grief. Working through grief is really a big ball of wibbly-wobbly timey-wimey stuff. Any reflection of anger would have been expressed in my blogs at the time I was experiencing it.  As you continue to read through my blogs, you see a definite change.  I have changed.  This is why I do not understand where these accusations of anger, hatred, and disdain are coming from are coming from.

For more about my journey through grief, click on the following links:

—> Autism, Empathy, and Grief – A Personal Story (Dec 16, 2013)

—> Grieving (Mar 30, 2015)

—> Sadness – Moving Through Grief and Finding Understanding (Aug 22, 2015)

My relationship with this person is not healthy, but this person seems to think that I am at fault for the situation that we are currently in. I suppose in some respect I am at fault.  I chose to put up a healthy boundary, but then was accused of pushing the family away. Growing up, I was never taught about healthy boundaries or how to say “no”.  I was taught to comply. I had to comply or face the wrath of yelling, crushing disappointment of a parent, or a major guilt trip. I had no defense against guilt being place upon me.  I was basically taught to be a co-dependent, which is not healthy at all.  I only learned how to overcome my co-dependency these last few years since my diagnosis. I didn’t even know about co-dependency until my marriage failed, and that co-dependency, that extreme feeling of wanting to help people that I have always carried contributed to my marriage failing.  I learned how to say “no” as an adult in my 30s. This is why I have been teaching my children the power of “no”. I want them to understand that they can say “no”, too.

This same person said I was “a fairly happy child despite of the problems autism put upon you”.  I wasn’t diagnosed with autism until I was 36 years old and I have a real problem with the wording of this comment.  Did I struggle growing up? Yes.  Did this person try to get me help? No.  Was there any discussion about my struggles?  Only that I needed to “come out of my shell” or questioned why I wasn’t more like my sister.  I was labeled shy and quiet and left to be.

To be clear, autism didn’t put problems upon me. Autism is not some separate entity that squishes people and holds them down.  My autism is not separate from me.  I am Autistic. The problems I faced growing up were a direct result of me not having the type of supports that I needed to be successful. I had to struggle on my own, because my autism was not recognized.  I was a girl, after all, born in the mid-70s and growing up in the 80s and early 90s.  There wasn’t a whole lot known about autism then, definitely not Asperger Syndrome, which is what I was originally diagnosed with in late 2011.

Okay, I am starting to rant now, back to the topic of families.

What does it mean to grow up in an emotionally abusive home and not realize it?  It took me a long time to accept what my home life was like even though as a child I felt something was off.  I didn’t understand what was happening to me, because it was all I knew.  How do you know that there is something wrong if a certain environment is all you know? I always had food to eat, clothes to wear, and a roof over my head.  I was always told that I was loved, but something wasn’t right and I never understood what it was until after I became a parent. Why didn’t I feel comfortable at home?  Why was I always so tense?  Why did I spend so much time alone in my room?

Facing the truth of one’s emotional child abuse takes a special kind of courage. But to be an emotionally healthy adult, the truth must be known, so that healing can begin, and the pattern doesn’t repeat.

An emotionally abused child who does not, as an adult, face the truth of their childhood is in great danger of repeating the cycle of emotional abuse with his or her own children.

“As long as [the experience of cruelty] remains hidden behind their idealized picture of a happy childhood, they will have no awareness of it and will therefore be unable to avoid passing it on. It is absolutely urgent that people become aware of the degree to which this disrespect of children is persistently transmitted from one generation to the next, perpetuating destructive behavior.” (Alice Miller, “The Drama of the Gifted Child: The Search for Self”)

Unfortunately, because emotional abuse is often tolerated or because the abusive parents are very secretive in their abuse (hiding their true selves when in public), emotionally abused children will assume that how they were treated at home was natural. They have no frame of reference. And so, the child will develop a skewed sense of what a healthy relationship is.

Emotionally abused children become adults with little or no self-esteem; a deep, pervasive sadness; problems bonding with others; and a tendency towards self-destruction.

For me, I never have had a tendency towards self-destruction, but more towards survival and always feeling that I had to move forward in life. I have to keep going no matter what.  I have had quite a bit of trouble with self-esteem and pervasive sadness, though. I also form very strong bonds.

An emotionally abused child usually continues being emotionally abused by the parents long into adulthood. The patterns have already been established since the child’s earliest years. The dynamics of the family have been set into place. Nothing is to drastically change it—unless the child grown up awakens.

Some adults experience a jolt, a sudden flash of memory, that is triggered by an event, a song, a movie scene, anything, really. Others remain asleep until the abusive parents become abusive grandparents—continuing the cycle of emotional abuse to the adult survivor’s children. Others will just reach the point where they cannot take it anymore; enough is enough.

And the abused child-turned-adult awakens, slowly realizing that not everything is as it has seemed. Everything is different now.

Taking the red pill regarding your emotionally abusive childhood leads to a very difficult path—but the important thing is that it is a path. You no longer remain stuck, wondering about the pervasive depression or sorrow.

I started fighting back after my children were born. Something inside insisted that I had to raise my children differently than the way I was raised.  They were going to get the emotional support I never got.  I was going to be their advocate, because I never had one.  I have been a parent now for fifteen years.  I tolerated much of my parents’ behavior over the years.  I tried to ignore it, tried to make excuses, tried to tell myself that it was just how they were and I had to accept it.  The finally straw came last June when I was slammed with the trigger.  There was absolutely no emotional support provided.  I was dying all over again and absolutely no shit was given.  Enough was enough.  I feel the most disabled when I am with my parents.  I am also always on guard.  I can’t relax.  There is something wrong, something very wrong, but whenever I have tried to discuss the matter I get nowhere.

Here I am again, asking those questions about family.  They are my parents.  There is a genetic link.  The love is still there, but this time it is different.  There seems to be no sense of responsibility on the part of my parents. No sense that there is something wrong with the situation.  Maybe I am being naive, but I want to make it right.  I want to feel safe with my family members.  My sister has kept a respectful distance, but she doesn’t feel there is a problem. She makes the same excuses I once did.  She also seems to have trouble seeing me as disabled.  I am her big sister.  I am not supposed to be disabled, or at least that is the impression I get.  She seems to want her idea of how the family is supposed to be to be true.  She did express some understanding of why I couldn’t talk on the phone, because many weeks after my trigger occurred she miscarried at 14 weeks. She found herself not able to talk on the phone either.  I really appreciate it that my sister contacted me to let me know what had happened.  I was able to give her words of comfort which she in turn greatly appreciated.

Families can make amends, it takes time, but healing can happen if both parties are willing to work with each other.  The healing might not look like the way you want it to or go as fast as you want it to.  It most likely will never be like it once was, but the important part to remember is that you don’t give up on each other.  You might have to walk away, but you don’t give up.

As for my situation with my parents, at this point in time I need to keep my healthy boundary up for my own protection.

“Adult children who have never spiritually and emotionally separated from their parents often need time away. They have spent their whole lives embracing and keeping and have been afraid to refrain from embracing and to throw away from of their outgrown ways of relating. They need to spend some time building boundaries against the old ways and creating new ways of relating that for a while may feel alienating to their parents.” (“Boundaries: When to Say Yes, How to Say No and Take Control of Your Life”, pg. 38)

Here are some suggestions from For Adult Survivors of Emotional Child Abuse that will help you to begin your path to healing:

  1. Seek professional help from someone who understands emotional child abuse. 
  2. Create some distance between you and your abusive parent.

You will find it difficult to put your new thoughts in perspective if you are still immersed into your parents’ lives. So, you need to create some space. Let them know that you need time to think about things.  In some cases, adult children will find healing, and they will eventually find new ways of communicating with their parents that is healthy.

  1. Don’t give up! Stay awake, stay vigilant.
  2. Take your time.
  3. Educate yourself about emotional child abuse.

You’ll be going through myriad emotions, so you should read to better understand how healing is a process and will not happen overnight. You can find a starter’s recommended readings here.  In the book “Boundaries: When to Say Yes, How to Say No and Take Control of Your Life” by Dr. Henry Cloud and John Townsend, the clinical psychologists discuss the severe impact of being raised without boundaries and its affects into adulthood. Also, look at the various sites here for information about emotional child abuse and healing.

  1. Be patient and loving with yourself. 
  2. Surround yourself with good, supportive friends.
  3. Understand you may lose friends and family members—but let them go.
  4. Keep a journal.
  5. Be mindful of your relationships.
  6. Pray or meditate.
  7. Let yourself receive love.
  8. Accept change.
  9. Find a creative outlet.
  10. Don’t give up.

Don’t give up. Don’t quit. Rest, sure. Take a little time to just lose yourself in music or TV or books for a little while… then continue on. DON’T QUIT. Don’t stop on your path to healing. Sometimes, the sorrow will be biting and cold—but don’t quit.

Know you are worthy of love, of respect, of kindness, of happiness, of dignity.

Know you matter.

Know that your life does make a difference.

**All quotes are from For Adult Survivors of Emotional Child Abuse.

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

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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.