Tag Archives: Anxiety

To Those Who Still Don’t Understand

(Content Warning: medical problems, references to death, suicide, murder)

I came across an article by Sarah Kurchak today, entitled To Neurotypicals On My 36th Birthday and it really resonated where my thoughts have been lately.  I commented on the article, but I felt I needed to expand my comment.

I have tried to live a healthy life style all my life.  I don’t drink alcohol, I don’t smoke, I don’t do recreational drugs, I try to eat right, and I am I runner.  Unfortunately, the statistics are not on my side.  Due to my genetics, my life expectancy has been shortened. 

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

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

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

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

I was diagnosed when I was 36 years old. This is the same age that the article is focusing on, the same age that the researchers CNN cites say is the average age that people like me die. 

I am a teacher and have been for almost 20 years. During the 2011-2012 school year, the same year I was diagnosed, my doctor told me that my stress was actually killing me. This is why I don’t have a classroom of my own anymore. I was very fortunate to be able to find employment where I can work predominately from home, but still keeps me in the education field. I don’t know if I will ever be able to return to the classroom on a regular daily basis.

Due to EDS, my body has been falling apart all my life. I have been a runner for 24 years. It has kept me out of a wheel chair. I had to stop backpacking and weight lifting long ago. I have had to garden in pots for years now (doctors’ orders). I am not even supposed to push a grocery cart anymore, because the right side of my diaphragm is no longer securely attached.

I don’t know how much longer my body and mind can take. Stress can literally kill you. I am so tired. I do know that whenever I just what to collapse, my body won’t. It has got a lot of fight in it still, though. When everything went to hell at 21 weeks when I was pregnant with my son, my body gave everything it had to keep him alive. He was born healthy and to term. That was 15 years ago and my body has never fully recovered. I am still bleeding internally with significant nerve and tissue damage.

I am 42 years old now and I don’t know how much longer I have. So, I will just keep carrying on the best I can with the time I have.

Looking through my old writings, I see that this carry-on-attitude is found all over.  I mean, what else can I do, but to keep moving forward? I am a single mom for two teenagers.  I don’t feel there is much choice in the matter.  The only other option that I see is giving up and dying.  My resilience is too strong, which I explain in “Strengths of Autism – Resilience”.  My body won’t let me give up, so I keep going. 

In The Hidden Meaning Behind “I’m Tired”,  I explain that the phrase “I’m tired” is just a cover for a long story of struggle, confusion, stress, frustration, pain, and exhaustion.  I am always tired.  It never seems to go away and it has only gotten worse as I have gotten older.

In September 2017, I came across this meme with a quote by Dr. Shana Nichols:

Females with ASD“Females with ASDs often develop ‘coping mechanisms’ that can cover up the intrinsic difficulties they experience. They may mimic their peers, watch from the sidelines, use their intellect to figure out the best ways to remain undetected, and they will study, practice, and learn appropriate approaches to social situations. Sounds easy enough, but in fact these strategies take a lot of work and can more often than not lead to exhaustion, withdrawal, anxiety, selective mutism, and depression. -Dr. Shana Nichols”

How long can a body maintain a perpetual cycle of burnout, stress, and pain? 

I really don’t know. 

Something my children’s psychiatrist told us this past week:

ARC – Autistic Renewal Cycle

ABC – Autistic Burnout Cycle

They need to acknowledge ABC, but focus on ARC. Both are in ABC right now. As a family, we need to find ways to break the ABC using ARC.

I have struggled with ABC for so long. Every year I would find myself in some level of autistic burnout. I need to break the cycle, too.

What the ARC looks like depends on the individual. Basically, an individual needs to be encouraged and provided opportunities to do activities that fuel them, that give back emotional currency.

Being stuck in ABC can potentially shorten a person’s life.  The cycle must be broken, but that is not a easy thing to do.  How does one fuel their emotional currency?

Personally, I feel it has a lot to do with acceptance.  I feel acceptance is the greatest gift you can give to a person. 

According to Rick Hanson Ph.D.:

“Accepting people does not itself mean agreeing with them, approving of them, waiving your own rights, or downplaying their impact upon you. You can still take appropriate actions to protect or support yourself or others. Or you can simply let people be. Either way, you accept the reality of the other person. You may not like it, you may not prefer it, you may feel sad or angry about it, but at a deeper level, you are at peace with it. That alone is a blessing. And sometimes, your shift to acceptance can help things get better.”

Acceptance is an action and it requires work.  Kassiane S. explains this concept beautifully in Acceptance vs. Awareness:

“Acceptance comes from a place of understanding.  Understanding isn’t generated by soundbites and posterchildren. Understanding takes work. To accept us, people first need to acknowledge us as individuals-as three dimensional, growing, developed characters. We are not all the same, and we are not but a collection of deficits. Acceptance is seeing that-and seeing that one’s distaste for an autistic person is more likely than not because of “autism”. Awareness tells you that anything objectionable about us is “autism”, but that explanation is clear, simple, and wrong.

Acceptance requires facing that which makes you uncomfortable about us, thinking about why it makes you uncomfortable, and confronting any prejudice at the root of that discomfort. To accept us is to make a conscious effort to overcome that prejudice, to recognize that your discomfort with our differences is far more your problem to overcome than ours.”

In Accept Them As They Are, Dr. Hanson continues to explain how you find acceptance:

“Consider how you have gotten tangled up with this other person, struggling to change them. When I do this myself, I become aware of my own rightness, positionality, judgments, pushiness, irritability, narrow views, hurts, longings, grievances, or remorse. See if you can let go of some, even all of these entanglements. Open to the easing, relief, and peace that can come when you do.

Also consider how much you like it when you feel that another person accepts you completely. It’s a beautiful gift – and we can give it ourselves to others when we accept them. Imagine how it might improve your relationship with someone if that person felt you accepted him or her fully. Acceptance is a gift that gives back.”

I am so very tired of fighting just to survive. I explained this in So, how does it feel to actually live your life as opposed to just surviving?  I chose years ago to live in the moment, because I don’t know how any moments I have left. 

When people want to push the idea that there is a supposed autism epidemic (there isn’t), I have found the question that will inevitably come up is, “If there is no epidemic, then where are all the autistic adults?”

Autistic adults are there and have been there since there have been people.  From what I have learned, autistic adults seem to disappear either by choice or design.  As they age, they either remove themselves from society to get away from the unrelenting life killing stress or they die at a much younger age than non-autistic adults.  The question really should be, “If autistic adults have always been there, then why are you not seeing us?”  

In closing, I would like to reiterate what Sarah Kurchak stated in her article about what to do if you want to help and add a few words of my own.

  • Listen to us.
  • Believe in us.
  • Let us be our authentic autistic selves.
  • Invest in our work.
  • Invest in science and actions that actually make our lives better now instead of chasing a hypothetical cure.
  • Meet us halfway, we can’t do all the work to conform to your world. Compromises need to be made and bridges need to be built. Help us build that bridge.
  • Tell us you accept us and mean it!
  • Tell us we don’t bore you.
  • Tell us we don’t drain you.
  • Tell us we are not broken.
  • Tell us we are not a burden.
  • And above all, don’t kill us.

So, how does it feel to actually live your life as opposed to just surviving?      

Have you ever been struggling for so damn long, then find yourself in a situation where things are working out, but your anxiety has gotten you on guard waiting for the possibility of the rug of life to be pulled out from under you again?

Ya, I am there. It sucks the feeling of relief right out of you. It is really annoying. I keep telling myself that I am in a good place right now, that everything I have been working toward professionally all these years is finally starting to materialize and it is not literally killing me in the process, but my damn brain won’t settle.

There are many reasons why I no longer have my own classroom anymore. Due to my physical health, I don’t know if I ever will be able return to a regular classroom teaching position. After nearly 20 years as a teacher, I miss being in a classroom, but my current job is allowing me to stay in the education field and apply my experience and training in a different way by helping one family at a time. I am paying it forward, you might say.

I am still grieving in my personal life. I have been grieving for years. It feels like forever. It is called Complex-PTSD. Even 15 years after my initial diagnosis, the pain is still there.  I have better coping skills now, but it is still hard. These days there are more good days than bad days.

Too much trauma and loss in my life, I suppose. I have been struggling so long just to survive, and be both mom and dad as well as teacher to my children, that I guess I am not sure how to live.

After everything that has happened to me, I have really struggled to convince myself that I have worth. I remind myself constantly. I have worth. I know I have worth.

*Deep breath.*

*Start again.*

I have value. I am worth it. I will not give up!

*Punches chest.*

I am a real person with real needs and dreams. I will not be silenced!

Not again . . .


Looking at Maslow’s Hierarchy of Needs, I have been at the bottom two levels for many years now.

So, how does it feel to actually live your life as opposed to just surviving?  


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.  




I Can’t Anymore . . .

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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


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

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

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

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

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

Hear My Battle Cry  (A poem I wrote.)

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

― Martin Luther King Jr.


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. 


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.



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!