Category Archives: mental illness

Talking About Mental Illness – Society Needs to do Better

Content Warning: Suicide and suicide thoughts.

Whenever a celebrity or well-known person commits suicide, suicide hotline information is plastered all over social media. 

Feeling depressed? Reach out! Call this number!

Know someone showing these signs? Reach out!

I am not disparaging the need for these types of hotlines.  Many people can find help through them. In 2015, John Draper (PhD, Director, National Suicide Prevention Lifeline Member, SPRC Steering Committee) reported that in the ten years since the Lifeline began, their centers have answered more than five million calls from people in suicidal or emotional crisis.  

National Suicide Prevention Lifeline – 1-800-273-8255 or Chat

En Español – Nacional de Prevención del Suicidio – 1-888-628-9454

For Deaf & Hard of Hearing  1-800-799-4889

The problem is, how many people didn’t or won’t call? How many children and adults don’t call and continued to suffer in silence, because the people they did reach out to dismissed them or they didn’t feel safe enough to reach out at all? How many kept silent, because they didn’t know what to say, didn’t want to burden their families, or because they were raised not to say anything at all?

According to the CDC, in 2016, nearly 45,000 Americans age 10 or older died by suicide. Yes, as young as 10 years old. Suicide is considered the 10th leading cause of death and is one of just three leading causes that are on the rise.  Researchers also found that more than half of people who died by suicide did not have a known diagnosed mental health condition at the time of death.

According to The State of Mental Health in America, 1 in 5 Adults have a mental health condition. That’s over 40 million Americans; more than the populations of New York and Florida combined. Youth mental health is worsening. Rates of youth with severe depression increased from 5.9% in 2012 to 8.2% in 2015. Even with severe depression, 76% of youth are left with no or insufficient treatment.

From the Anxiety and Depression Association of America, ADAA:

“Anxiety and depression are treatable, but 80 percent of kids with a diagnosable anxiety disorder and 60 percent of kids with diagnosable depression are not getting treatment, according to the 2015 Child Mind Institute Children’s Mental Health Report.”

“Anxiety disorders affect one in eight children. Research shows that untreated children with anxiety disorders are at higher risk to perform poorly in school, miss out on important social experiences, and engage in substance abuse.”

In Spokane County, Washington State, the youth suicide rate more than doubled from 2013 to 2016. It went from 4.3 per 100,000 people 24 and younger to 10.7, Washington State Department of Health data show.  It was reported that nearly 20 percent of Spokane County’s eighth, 10th or 12th graders have seriously considered suicide, according to the Spokane Regional Health District. In 2016, the last year data was publicly available, 15 percent reported that they made a plan to do so. Chris Moore, a student services coordinator with Spokane Public Schools, says suicide attempts are spiking as well, even among kids in elementary school. “We’ve seen a drastic increase with the number of attempts,” Moore says. “It’s a public health crisis. It really is.

For more information – As youth suicide rates surge in Spokane, school officials search for answers

My family has a long history with mental illness on both sides. Then there is my ex-husband’s family.  Various forms of anxiety and depression, PTSD, Bipolar, alcoholism (which is considered a mental illness according to the AMA and the APA – it’s all there based on information spanning five generations.  

For more information – Anxiety and Depression Association of America – Facts & Statistics

My sister-in-law, who I will never have the opportunity to meet, violently committed suicide with a gun when she was 21 years old, three weeks after her son was born.  He will never know his mother.  He is now older than she was when she ended her life. His father raised him on his own. 

My brother-in-law has struggled with depression all his life and has been slowly killing himself with alcohol and drugs. He is in his fifties and he doesn’t expect to outlive his parents. He can’t hold on to a regular job and lives most of the time with his parents and some of the time with his girlfriend. 

My ex-husband has also struggled with depression all his life, but has refused treatment.  His untreated mental illness and his untreated personality disorder ripped our family apart, twice.  He ran from life instead of facing his problems.  He couldn’t deal with his demons, so he pushed his family away and went into isolation with his seven guns and his paranoid ideas.

My ex-husband came from a family who doesn’t talk.  My ex was raised to believe that it was a sign of weakness to talk about your emotions and to ask for help.  Instead, he buried his demons, walled himself up, and went emotionally flat lined to the outside world. The reality is that he can’t handle his emotions, he fears them.  He is emotionally stunted, a 45 year old man emotionally stuck somewhere between a 12 year old boy and a 17 year old teenager.  Our children are actually more emotionally mature than he is.  My sister-in-law killed herself when my ex was only 17 years old and that is where he stopped growing emotionally as a person.     

My son, who is now 15 years old, was diagnosed with depression and anxiety when he was six years old.  He was diagnosed with Autism a year later.  Autism is a developmental disorder, not a mental illness.  My son was on suicide watch twice when he was 11 years old due to his father’s behavior.  My ex had fallen into a major depressive episode, the worst I had seen him be in. He refused to get help.  He neglected and then abandoned his children resulting in my son developing PTSD.  My son was never suicidal, but he had given up hope in life. He saw no point in life any more.  My son still struggles with depression.  He is on medication and goes to weekly counseling sessions. 

My daughter was diagnosed with Bipolar when she was only eight years old.  She has been on medication ever since. She was diagnosed with Autism two years later at the age of 10.  She is now 17 years old.  She was hospitalized when she was 15 years old due to going into psychosis.  She had been essentially stuck in a depressive state for some time and then had a breakthrough manic state.  The combination sent her into psychosis.  The voices told her she had to hurt herself with a knife and then the voices told her to use fire.  She never did and insisted that she could keep fighting the voices, but we managed to convince her to go to the hospital where she stayed for a week in the youth psychiatric ward.  Three months later a space opened up at a long-term treatment facility for youth.  She went into long-term care as an outpatient for three months.  Her medications were straightened out and a new treatment plan was developed for her to be used by her counselor, occupational therapist, and her speech therapist.

Then there is me.  I was diagnosed with Autism after my children were at the age of 36. 

Depression and mainly anxiety have been a part of my life for as long as I remember, but no one talked about it.  I didn’t have the words I needed to use growing up to describe why I felt the way I did.  I was told to lighten up, to stop taking things so seriously.  I was yelled at if I cried.  I was conditioned to not show emotions or to ask for help.  I was also conditioned that my needs didn’t matter.  I was on my own and told to take care of my younger sister who was only two years younger than me.  Alone, that was how I felt for so damn long.  No one listened when I tried to reach out, so I stopped reaching out.  I withdrew into myself, which only isolated me more, because my family either didn’t know what to do with me or took it personally that I had withdrawn, so I was ignored.  I was an undiagnosed autistic child with undiagnosed mental health issues. 

I grew up in a toxic home, but I didn’t realize it.  All I knew was something was off, but I never could figure it out.  I was told I was loved, but I felt so alone and I was scared.  I felt silenced.  What I wanted never seemed to matter.  I was conditioned to comply.  I had no idea how to say “no” or how to advocate for myself.  I was to comply with the wishes of others and rules were rules.

I didn’t know anything about emotional abuse until I was required to take a class for my professional certification as a teacher.  Even then, my mind just couldn’t accept that I had come from an abusive home life.  No, it couldn’t be.  There were other reasons for the behavior, always an excuse, excuses I had heard as a child growing up, excuses I was taught to just accept without question.     

By the time I took this class, I was already married and a parent.  I also hadn’t realized that I had married into an emotionally abusive marriage.  I married what I knew.

For more information – Invisible Scars – A Tale of Emotional Abuse

About 15 years ago, I went through a horrible medical trauma that was made worse by my family’s behavior.  More information can be found here – The Volcano is Awake. There was a time that I wanted to die so the pain would end, but I was never suicidal. I reached out for help so many times, but I was told get over it, bury it, move on.  I would reach out and get a cold shoulder or a back turned to me.  I had to get myself through that dark time of my life on my own and I would never wish that torture on anyone.  What got me through was that I couldn’t leave my children without a mother.  They were only a baby and a toddler at the time and something inside me kept saying that there was no one else to take care of them.  It was my responsibility as a mother that pulled me out and in the process “mama bear” emerged.  I had reached my breaking point, but never fully broke.   I became stronger, but in the process of working my way out of the darkness, I learned I had developed Complex – PTSD.  

Reach outWhen my marriage ended, I once again reached out for help, but was met with the same cold shoulders and told to move on, get over it, stuff it away. As with my medical trauma, I was not allowed to grieve in the way and for the length that I needed to.  I had become an inconvenience, a burden, again.  Once again I found myself alone with two children, teenagers now, and I had to get through the emotional pain of having my family ripped apart, but this time I was going to do things on my terms.  By this time I had learned about self-advocacy and self-determination.  I drew the line and held those boundaries. 

I reached out to others outside my family.  It took time, but I eventually developed a support network that is primarily online.  I am in a better place now, but my children and I are still grieving.  We are getting there, though.  We are much better than where we were a few years ago, but the depression is still there.  It has never fully gone away and I don’t know if it ever will. 

I have tried to create an environment where my children can feel safe talking about how they feel. I want them to feel that there is someone who will listen to them, who feels their voice is important, and who will never give them a cold shoulder and tell them to get over it and move on.  I remind them often that they each have a whole care team rooting for them.  I want them to know they are not alone.   

There is still too much stigma around mental illness. In 9 Ways to Fight Mental Health Stigma, Laura Greenstein states, “Stigma causes people to feel ashamed for something that is out of their control. Worst of all, stigma prevents people from seeking the help they need. For a group of people who already carry such a heavy burden, stigma is an unacceptable addition to their pain. And while stigma has reduced in recent years, the pace of progress has not been quick enough.” 

As a society, we need to do better.  We can’t just post about a suicide or crisis hotlines only during a time when a celebrity commits suicide.  We can’t just think posting these hotline numbers are enough. 

What is mental health stigma?

Mental health stigma can be divided into two distinct types:

  • social stigma is characterized by prejudicial attitudes and discriminating behavior directed towards individuals with mental health problems as a result of the psychiatric label they have been given.
  • perceived stigma or self-stigma is the internalizing by the mental health sufferer of their perceptions of discrimination and perceived stigma can significantly affect feelings of shame and lead to poorer treatment outcomes.

How can we eliminate stigma?

People tend to hold negative beliefs about mental health problems regardless of their age, regardless of what knowledge they have of mental health problems, and regardless of whether they know someone who has a mental health problem.

 “The fact that such negative attitudes appear to be so entrenched suggests that campaigns to change these beliefs will have to be multifaceted, will have to do more than just impart knowledge about mental health problems, and will need to challenge existing negative stereotypes especially as they are portrayed in the general media.” – Graham C.L. Davey, Ph.D

According to National Alliance on Mental Illness (NAMI), stigma harms the 1 in 5 Americans affected by mental health conditions. It shames them into silence and prevents them from seeking help. People need to feel safe talking about mental illness, so here I am talking about mental illness in a public forum.  I do not feel shame.  I do not feel embarrassed. I am not a burden. I refuse to be silenced.  I want people to know that they are not alone. End the stigma!!

Educate Yourself and Others – Learn More

“Everyone knows a little about mental health issues but knowing the facts can help you educate others and reject stigmatizing stereotypes. They are not the result of personal weakness, lack of character or poor upbringing. Understanding mental health isn’t only about being able to identify symptoms and having a name for conditions, but dispelling false ideas about mental health conditions as well.” – NAMI

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Ableism in Society – Autism and Mental Illness

Last week my, children and I attended a traumatic brain injury symposium.  I attended for work purposes, but it ended up resulting in so much more.  If you have read my previous blogs, you would know that both my children and well as myself are autistic.  My daughter also has bipolar, more specifically, Juvenile or Early-onset Bipolar Disorder.  She was officially diagnosed when she was eight years old, two years before her Autism was officially diagnosed.  In hindsight, her autism was obvious from the very beginning, she was even tested twice for Autism as a toddler, but her bipolar symptoms seem to over shadow her autistic traits.  Once she started medications to treat Bipolar, her autistic traits became more apparent.  This eventually led to her receiving an official diagnosis for Autism.

My daughter’s autism diagnosis changed after the DSM-V came out in 2013.  She originally was diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS).  After a re-evaluation, her diagnosis became Autism Level 2 with accompanying language impairment.  The changes in the DSM-V allowed my daughter to get a much more precise diagnosis allowing her care team to develop a more appropriate care plan. 

My daughter is now 17 years old.  She has attended two Autistics Present Symposiums, and now a traumatic brain injury (TBI) symposium.  My daughter does not have a traumatic brain injury, but she discovered that she felt more at home with the people who attended the TBI symposium than she did at the Autistics Present Symposiums.

When I asked her why, she had a very eye opening answer.  What she discovered at the TBI symposium is the people there carried a lot of anger with them.  They are angry about their situation, they are angry about how other people treat them, and some of the people also spoke about their fear of their condition, their temper, and their struggle to adjust and conform to societal expectations.  The TBI symposium also addressed ableism My daughter told me that she encounters ableism every day.  She doesn’t say anything, because she is using so much energy not to get angry.  She is so worried about losing control.  She is at war with herself all the time trying to keep her from being pulled apart by everything she is experiencing internally and externally.  She has nothing left to self-advocate about the ableism she is encountering. 

My daughter told me that she feels people treat autistic people in a softer, gentler way.  People are more accepting of an autistic person than a person who has bipolar.  There is so much negatively surrounding bipolar. She hears people with bipolar are awful, unkind, and cruel people that hurt other people.  My daughter hears it in the media, in school, and out in the community.  Compounding the problem were the voices she would hear in her head telling her she was bad and even instructing her on how to hurt herself with knives and fire.  Luckily, she has not heard those voices in two years, but she still hears the negativity by real people. 

She feels safer saying she is autistic than telling anyone that she also has bipolar.  It takes a special kind of environment where she feels safe enough to disclose about her bipolar.  She felt more at home with people who have experienced traumatic brain injury, because she understood what they were talking about.  She understood their anger and frustration.  She understood the ableism they face and the impatience of people who do not understand the situation.  I am not saying autistic people don’t face ableism.  They do, a lot.  I think what my daughter was trying to explain was that autistic people might be treated with more understanding, but for a person who has a serious lifelong mental illness, that same understanding is not there.

My daughter’s autism and her bipolar are tightly wound together.  Each impacts the other.  How she experiences the world is a result of how her bipolar and Autism interact.  Society as a whole is telling her that part of her is tolerable and part of her is bad.     

I asked my son, who is 15 years old, what he sees when it comes to the difference between how autistic people are treated versus how people with mental illness are treated.  He told me that he thinks autistic people are treated with more contempt and he gave the examples of ABA, “cure”-based thinking, eugenics versus super human perceptions/intelligence like the new Sherlock Holmes. He then said people with mental illness are treated with more fear.  He feels people fear those who have mental illness. 

According to NAMI:

  • Approximately 1 in 5 adults in the U.S.—43.8 million, or 18.5%—experiences mental illness in a given year.
  • Approximately 1 in 25 adults in the U.S.—9.8 million, or 4.0%—experiences a serious mental illness in a given year that substantially interferes with or limits one or more major life activities.
  • Approximately 1 in 5 youth aged 13–18 (21.4%) experiences a severe mental disorder at some point during their life. For children aged 8–15, the estimate is 13%.
  • 1% of adults in the U.S. live with schizophrenia.
  • 6% of adults in the U.S. live with bipolar disorder.
  • 9% of adults in the U.S.—16 million—had at least one major depressive episode in the past year.6
  • 1% of adults in the U.S. experienced an anxiety disorder such as posttraumatic stress disorder, obsessive-compulsive disorder and specific phobias.
  • Among the 20.2 million adults in the U.S. who experienced a substance use disorder, 50.5%—10.2 million adults—had a co-occurring mental illness.

“NAMI condemns all acts of stigma and discrimination directed against people living with mental illness, whether by intent, ignorance, or insensitivity. Epithets, nicknames, jokes, advertisements, and slurs that refer to individuals with mental illness in a stigmatizing way are cruel. NAMI considers acts of stigma to be discrimination. Stigma reflects prejudice, dehumanizes people with mental illness, trivializes their legitimate concerns, and is a significant barrier to effective delivery of mental health services. Because of stigma, individuals and families are often afraid to seek help; health care providers are often poorly-trained to refer people to mental health professionals and/or mental health practitioners, and services are too often inadequately funded.” (Stigma And Discrimination)

Ableism is considered the intentional or unintentional discrimination or oppression of individuals with disabilities.  Ableism falls right in with racism, sexism, ageism, and classism.  People can be ableist without even realizing it. Ableism can exist in many forms.  Here are some examples:

6 Forms of Ableism We Need to Retire Immediately

Ableism/Language

What is Ableism and how is it harmful?

If you have a child who has been labeled a behavior student in school, ask yourself, “Is ableism in the classroom a possible trigger for your child’s behavior?”

If you are experiencing anger in the work place, ask yourself, “Are you experiencing ableism where you work?”

My daughter wanted to add a quote to the end of the blog:

“Spread the facts about mental illness, not the bias!”

The Invisible Torturer

Anxiety ImageAnxiety, why do you torture me so?

The shaking,

The heavy breathing of panic, 

The buzzing in my brain that exercise doesn’t subdue,

The pounding stims that have started up,

The flicking fingers that will not still,

Anxiety, just stop!!

 

What is behind all this anguish?

I want to escape, but escape from what?

My senses are heightened for why I do not know.

My feet and legs want to run, and run, and run.  

But where?   

There is no destination that will take me away this.

The torturer is inside me.

 

Anxiety, let me go!

I want to be free, but you are too strong.

Your invisible claws have enclosed around me.

No one sees my torment, for you have taught me to hide.

I must hide this agony, because no one believes me.

I am told I am being silly, that it is nothing, that there really isn’t a problem.

So, I suffer in silence and go about my day.

 

For me, Anxiety and Depression tend to go hand in hand.

I continue to fight against Anxiety and it wears me down.

Depression moves in due to my weakened state.

I am being attacked on all sides.

Yet, no one sees this battle, for the battle is inside me.

I cry, I yell, I run, I write, I make art.

I do this to fight the never ending onslaught of Anxiety.

 

I am weary in this battle.

There are days Anxiety gets the upper hand.

More days than I would like to admit, but I persevere.

Battles may be lost, but I carry on to fight another day.

Because loosing this war is not an option.

I will not allow Anxiety to be victorious.

So I take deep breaths, I center myself, and I continue on.

 

(Image is of a drawing of woman in a dress sitting down while covering her face. Artist is  Clara Lieu.) 

 

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.

Personal Responsibility, Self-Advocacy, Education, and Support

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I WANT TO LIVE!!

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

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

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

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

I HAVE WORTH!!

I MATTER!!

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

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

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

Hear My Battle Cry

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

Hear My Battle Cry

I will make it through!

I will survive!

Hear my battle cry!

 

I may be hungry.

I may be cold.

I may be in pain.

 

But, I will make it through!

I will survive!

Hear my battle cry!

 

I may feel hopeless.

I may feel lost.

I may feel alone and isolated.

 

But, I will make it through!

I will survive!

Hear my battle cry!

 

My body may be taxed.

My mind may be flooded.

My spirits may be shattered.

 

But, I will make it through!

I will survive!

Hear my battle cry!

do-not-give-up