Speak

 

Speak. And when shame rears its ugly head and tells you to be silent, SPEAK LOUDER. 

I'm not insecure

 

After all these years of beating myself up for not being able to overcome my self-consciousness, I find that I'm not really an insecure person who can't get past herself, I am autistic. The times I'd stress and spiral over social interactions, and micro-analyze casual conversations were sensory overload and processing disorders. I couldn't talk therapy my way out of my looping thinking patterns and self-defeating thoughts no matter how hard I tried. It wasn't a character flaw or a lack of will power and certainly not a lack of faith, as my long time counselor implied. It is simply a matter of having a different kind of brain. What a relief it has been to discover this. Suddenly there is a wide open field in front of me after years of clinging to a craggy narrow path. 

There is a common misconception about autistic people, that we lack emotion or empathy. That we are not social or engaged in the relational aspects of life. So much of the research has centered on a specific demographic with specific outward traits, that girls from my generation and with my compliant and quiet personality, just did not fit the profile. And as the way of the world is still very centered around the patriarchal views, even as the science evolves, the mainstream misconceptions remain. 

The truth is we are highly emotional and empathetic. Many people who self-identify as empath's are likely undiagnosed spectrumy people, trying to make sense of why they feel everything so deeply, and see details other people often overlook. 

There is no filter. 

We feel it all and have trouble regulating our emotions. I am a crier and a laugher mostly. Many of my smiles are forced and many days I can't remember how to train my mouth into a grin when a camera is pointed my way, but my laughter is genuine. I love to crack jokes and love to hang out with my friends. The higher energy involved sends me crashing under the covers afterwards, but it isn't because I'm shy or simply introverted. It's because the energy required to be out in the world, when there is no filter to keep from absorbing it all, is physically exhausting. 

Yesterday was an annual visit to my doctor. I really would benefit from seeing her a lot more frequently, but her practice is private and the appointments are expensive out-of-pocket and out-of-network, so I limp along throughout the year until she makes me come in for bloodwork to get more refills on my prescriptions. 

This year, with the new diagnosis in hand, I discussed my chronic illness packaging with an enlightenment that has been missing my entire adult life. The connection between Autism and the health issues I have is strong. The generic "connective tissue disorder" and diagnosis of Lupus only covered some of the symptoms. The newest diagnosis of Mast Cell Disease and Mastocytosis, covered a bit more. The knowing of the one thing, has lead to the discovery that the likely umbrella for what I experience physically is EDS - Ehlers Danlos Syndrome. All of the myriad unexplained and seemingly unrelated symptoms, the way they've increased in severity over the years, all of it fits this newest diagnosis. Another piece of the mystery is solved. 

Many patients with EDS take a medication known as LDN and we discussed the possibility of me giving it another try, since I hadn't given it a fair shake when I tried it for Lupus many years ago. The doctor mentioned the potential for vivid dreams and suddenly I find myself laughing with her about the vivid sci-fi like dream I did have when I tried taking this med before. 

I was lying on a bed in a room on the second floor of a house. Nothing was familiar, but I knew my family was downstairs, as if we lived there. Staring up at the ceiling, I felt a dizzy sensation and realized the ceiling was moving, but it wasn't a ceiling at all. It suddenly dawned on me that there was no roof on the house and I was staring at the underbelly of a slow moving spacecraft. Like, Star Trek level, intricate looking machinery that was vast, and a mere inches above the house. 

As I watched the thing above me, I was keenly aware of how conspicuous and vulnerable I was. I remember thinking that I hoped "they" didn't see me. I wasn't afraid, but I didn't want to be seen and I didn't know why. I had no idea who they were or what was happening. 

Recalling that dream, those words in my own thoughts leapt out at me "I felt conspicuous, vulnerable, and didn't want to be seen." This was what life has been like not knowing I was Autistic! A trip to the grocery store on a particularly hard day came to mind. It wasn't anything happening in my life that made it hard, it was the loud volume of the music over the speakers, the glaring overhead lights, the crowds, the feeling of not finding what I needed, and every single last person that I walked past sent me into spirals of self conscious looping. 

Do I smile? Say excuse me for standing in the spot someone else wanted to be? Smile. Don't smile. Be polite. Say hello. Look friendly. Don't speak! OHMYGOD! That sounded stupid! Don't look! You looked rude! You look weird! You are making a big deal out of nothing!

I felt conspicuous, vulnerable, and didn't want to be seen. 

Recounting this hard day to my therapist later on, not yet knowing the truth, she cocked her head and simply said, "life is not supposed to be that difficult". 

Indeed. 

Knowing the truth about my brain and my physical health is everything. Knowing may not change everything around me, but it changes something pretty profound within me. 

I am not insecure. I am hyper-sensitive, I am unable to filter. I have a sensory processing disorder. Now I know on hard days that I can simply duck my head, put on a pair of headphones and keep to myself. 

I am not flawed. I am a beautiful empathetic human being. 

I Grieve

Listening to podcasts all afternoon as I packed paper packs in the studio yesterday, it hit me that I grieve the end of my marriage the same way I grieved my father's passing. Not for the loss of the relationship I had, but for the loss of a relationship that never existed. The loss of hope that it ever would be. 

I did not mourn for the father I had, I mourned for the father relationship I never knew. A healthy love from a healthy man who could love me unconditionally and with the nurturing a little girl needed. 

I do not mourn the loss of this marriage that is finally coming to an end. I mourn the knowing that, at 56 years old, I've never known real "romantic" love. Always my relationships have been an act of desperation. Connecting with someone to fill a void. Always that someone has been glad to prey on my desperation. Always I've lived in the illusion of it. Always, I've wrestled with my own demons. 

Tried to purge my own personhood. Contorted. Distorted. 

It has been nearly three years since we separated - over a year since the paperwork was filed in court. As the final (please for the love of god, let it be the final) court date draws near, the memories unfold in my mind. Scene after scene of emotional abuse and my unyielding hope that I could find just the right combination to make it work. 

To somehow prove to myself and the world that I was worthy of it. His love. Knowing full well, and yet somehow blocking it from my mind, that he was a clinically diagnosed narcissist, incapable of giving or receiving anything resembling it. Chasing my own tail.

In the past three years, I've found that combination I sought in order to be loved. It never had anything to do with him. 

For all those years it took me to finally see my own worth and love my own self--I grieve. 

Wound Care

Writing my stories, even in this relatively obscure way, where I know that maybe a few dozen people will happen upon these posts and read them now that this is no longer the hub of my creative life and teaching schedule, comes with no small amount of internal backlash once I hit the button to publish. 

A part of me is off and running, forming new posts, pulling out other long buried memories. Ready to write it all out of my system. But the other part of me, maybe the wiser old crone inside of me even, is cautioning to take a slower approach. 

These are wounds that I am opening, revealing, allowing to be exposed to the air and other peoples scrutiny for the first time in decades. They have not healed properly under cover of darkness. The exposure is painful and requires new dressing, salve to ease the inflammation, rest. 

Wound care. 

 

It's only a number

Statistics have always been comforting to me. They somehow help me make sense out of the world. Validate my experience or affirm my opinions with a cold hard percentage and it strangely brings me peace. It turns out, my attachment to citing statistics is somewhat of an autistic thing. 

Sometimes a statistic will help me gain clarity about a decision. Like getting the vaccine in spite of the higher potential for harmful side effects my chronic illness brings, because the statistics are clear that those with the vaccine are not getting infected as much or as severely as those without, and I couldn't live with myself if I somehow infected one of my grandkids.

Here's a statistic I heard today--on average, it takes a woman seven attempts before she finally breaks free from an abuser permanently. It took me five formal separations before I finally broke free of the mindset that took me back to my husband over and over, not counting all the times I took up residence in a different bedroom, or the studio floor, or the back seat of the car, or a friends guest bedroom for a few nights. Maybe it was 6, if I count the time I checked into a hotel out of desperation. Don't even ask about my two previous marriages.

One time, early on in this marriage, he was having one of his rage episodes. Picture a tiny Godzilla storming through the house, veins popping out of his neck, eyes bulging, nostrils flaring, screaming threats as he tore through closets and drawers looking for the items deemed his whenever he raged - my car keys, my money, my checkbook, my debit cards, my phone. Anything that would enable me to seek help or land on my feet if I did escape. The punishment for making him angry was to have it all withheld and be told I had to leave, but then he would block the door and demand even more, telling me to go, while physically blocking my ability to do so. 

On this particular day, I hid in my kids basement bedroom with a few of my own possessions, my purse and car keys tucked inside my coat, while I frantically packed the kids belongings into their school backpacks listening to him rage through the house overhead, demanding all the things.

We were a household of four of his kids and three of mine, all living in a single story ranch house with one bathroom and makeshift unfinished basement bedrooms we built when my kids and I moved in. 

That day, I slid the window of his oldest daughters bedroom open - not an english basement, or a deep window well, with a large window - this was one of those tiny crawl space kind of windows that slid to one side, and one by one I lifted the kids that were home through and we all piled into my car for the only place I could think to escape - his ex in-laws house, because they happened to be out of town and we were keeping an eye on their place. 

It wasn't long before he came looking for us there. With more raging and threats to turn me in for kidnapping, he gathered all of his offspring up and made them leave with him, screaming at them about their loyalty. About a half mile down the road, he pulled over and made his junior high aged daughter get out of the car and walk back to her grandparents because she hesitated too long when he demanded she respond in agreement that I was the enemy. I'll never forget how she rushed into my arms sobbing her anguish and confusion when she got back to her grandparents house. 

It was the last time any of his kids failed to express their loyalty to dad when he raged. After that, whenever he had one of his episodes, he would gather them on the couch afterwards and whisper insulting jokes about me into their ears to make them laugh, while I cooked their dinner and walked on eggshells trying not to trigger him again. 

I tried hard to prove my love to them. Went out of my way to prove I didn't favor my own kids, to my own kids detriment. The bond I tried to form with his kids was severed over and over and to this day they would agree with him that I am just another one of his crazy exes. I finally see how he painted this picture of the crazy ex to me. How easy it was to believe that story because she turned to alcohol and drugs to cope. I actively worked with him to win custody of his kids, because it was so apparent what a mess she was. God forgive me. 

The raging is no longer a part of my life. We have not lived under the same roof for nearly three years now, yet we are still married. The divorce has dragged on and on. I sit here with that same pounding heart and flood of PTSD symptoms and memories welling up, as I compile an ungodly number of documents to prove that I am not hiding income from him. This was his response to my attorney informing the judge that I was in the process of applying for disability. The abuse is now being done through the legal system. 

Sixty-two percent of women on disability report having been physically, emotionally, or sexually abused throughout their life. Higher still among women on the spectrum.