By: JD Author, Reporter-Journalist
Stress is like spice –
In the right proportion it enhances the flavor of a dish.
Too little produces a bland, dull meal; too much may choke you.”
Some days I get overloaded, and like a volcano, the pressure in my mind blows! Sometimes I scream and swear like a lunatic in a room by myself, scaring my poor furry pets just on the other side of the door; other times I collapse onto the floor in uncontrollable tears, feeling helpless and hopeless. Either way, I seem to lose perspective. I have had many an overload in public places and have had to excuse myself and retreat to a restroom to “let go’. In extreme situations, I have faked being ill, just to retreat hastily to my car and scream, beating the steering wheel and cursing myself and the world for the things I cannot control. A few times people have noticed, judged and I felt their glares. In my mind, I am screaming at them.
This is my meltdown, you will never understand!
It was 1:45 pm, while sitting in the Orthopedic surgeon’s office waiting to see the doctor for my 1:30 appointment. I had my noise cancelling headphones plugged into my iPhone, listening to a white noise app that helps drown out the millions of noises my brain seems to obsess over and not turn off. Then it happened…… I had forgotten to change the batteries in my headphones!
Damn them noises all to hell!
There I sat in a lobby full of whispering people, the sound of feet shuffling, heels on tile, vents rattling, keyboards being plucked on.. all these noises, and they were getting louder, and I couldn’t block them out. It’s hard to explain to someone who has never experienced a sensory disorder, but it resembles a threat that keeps drawing closer and closer, and you must retreat before that threat harms you. I left my seat in the waiting room and fled to the bathroom in a rapid panic, that left the receptionist baffled, and staring as I did so.
I locked the stall door and was never so thankful for the fancy tall wooden doors with locks that the facility had. Falling to the floor, with my hands over my ears to try to hide the noise, I cried. The whole time I was telling myself;
Just breathe…in, out…in, out, it’s just noise, it won’t hurt me…
I heard the main bathroom door open, and a voice call my name and ask if I was okay. I choked down a tear and said “yes, I just feel a little sick to my stomach”, knowing it was a lie, but that little lie seemed to be effective in the past. She tapped on the door and said “I am your nurse practitioner, and I understand”. I opened the door and she sat down next to me on the floor, and held my hand. I explained to her about my batteries dying in my headphones, and that I used it as a way of coping, she said “ I can remedy that, as she reached for my headphones and told me she would be right back.
She returned with the headphones with a new battery and a package of extra AAA batteries for me to keep in my handbag in case it ever happened again. We then left the bathroom and she took me through a different hallway back to a room to wait for my doctor. Explaining that she has a sister with ASD, and knows that some days, things just hit us the wrong way, and some days we can block everything out and “appear” normal. I felt a little better, and she gave me a bottle of water so I could down one of the anti-anxiety meds I had for moments when I want to just fall apart.
Lately I haven’t had as many moments of anger and rage that I need to let out. It seems lately it is just the opposite. I have meltdowns triggered by sensory malfunctions, or even comments I take wrong. I do understand that we all have a joking or cynical side, yet as of late, my processing and filtering mechanism makes me see them as an attack or literal, leading to that glorious meltdown that leaves me mentally caphut!
When my meltdown is over, I feel totally confused and exhausted. Then the self-loathing sets in. It’s not like I am crazy, although some days I feel like I am. I never really know when it is going to happen, but I dread them. Sometimes it can be the smallest thing that sends me spiraling into the emotional abys of a personal hell. My meltdowns seem to have a mind of their own. This week I have been a disaster. I have had a meltdown almost twice every day and the week is only half over.
I shared some of my feelings and episodes of irrational reactions with my doctor last month and he changed around some of my medications. I have also made it a point to try an avoid some “triggers” that add to my anxiety.
My Doctor also expressed that since meltdowns can be so intense and severe, it’s important that I start talking about them to loved ones and to other people I know. Now that’s a joke! I had to remind him just how my family is. I did mention briefly my diagnosis to my mother, who is a retired Psychologist and she said that it is impossible for the diagnosis to be correct. She emphatically refused to accept it, and that her diagnosis was correct. That of course did not surprise me, considering she is NEVER wrong, and God-forbid anyone argue her integrity in knowing how to exactly diagnose someone! That is why I skipped sharing the diagnosis and just continue to let them assume I am mentally ill, as my psyc-schooled family had already labeled me over the years, and engrained into their ideology of me.
Then there are my close personal friends, who I cherish dearly and shared some of my world, heart and soul with recently. They seem compassionate, yet I am skeptical. Perhaps it is because I have experienced their judgment of overweight, racially different, and financially challenged people enough that I wonder just how they see me. People tend to judge what they do not understand, just as much as I judge myself. How can I trust someone to truly understand and love me as a close friend and not appear crazy to them, when they seem to have some snide and judgmental comment they throw out at everyone that is a tiny bit different than them? It’s unfortunate, but true.
I try to explain just how the irrational anxiety is to people and why I prefer to not go out with friends unless totally drugged up on some wicked meds, but they seem to not understand the effect it has on me. They see it as I am psycho, or that I have simple social anxiety. What they see is one thing, what I feel and see is another. How do I explain what is really going on?
I have a confidant who once explained it well when he said:
Picture in your head that you’re being held against your will by an unknown assailant. It happens daily, sometimes many times a day, sometimes once a day. Sometimes he comes to you at night. He holds a gun to your head, with only one bullet. He spins the cartridge, and pulls the trigger. You melt in sweat and panic. The shot fires, the bullet is not in the chamber. But it could be, the next time…. That’s the type of fear that comes with anxiety triggered with ASD.
Anxiety can be a cruel hostage taker, it robs me of my joy in living.
Dealing with all my other medical issues as well as ASD has been hard. It is even harder when the constant changes in treatments and balancing my emotional state has been a mountain I am having difficulty climbing. I still feel like a scientific experiment, a guinea pig for the medical community to investigate.
It is hard to explain, but I try my best. I have meltdowns, episodes of sheer happiness and then the episodes for which I cannot find a name for them. In the same way that I experience pure unadulterated happiness, I also experience a very pure form of anger. It starts in my brain and terminates in my hands. It’s reflexive. White hot anger. Irrational and short-lived but existent. The best way to explain it is; I have a friend over to hang out and work on some crafting project were both interested in doing, and we happen to bump into one another in my shop and I impulsively, irrationally get the urge to punch them. The crazy thing is, I am not mad at them at all. I’m not mad at anyone. I’m experiencing the emotional equivalent of touching my hand to a hot stove. My trigger, leads to a physical impulse to react. There’s no cognitive processing involved in my actions. I’m not thinking. I’m reacting. Through good behavioral therapy and medication, I am learning to control the reactions in my brain that happen.
This feeling, this need to react, is almost always triggered by a physical experience and only happens when I’m at the precipice of my limit for sensory stimulation. I’ve learned over the years to control the physical impulse. When the trigger hits, I feel a spike of intense negative energy surge from head down my spine, and I find whatever inanimate object is readily available and grasp it in my hand, and breathe slowly and focus on controlling my urge to lash out. It soon subsides.
If I didn’t hold on tight and ride out the uncontrollable physical impulse I have, I would lash out at whatever was nearby. I would resort to punching a wall, throwing or breaking some object to expunge the energy and impulse to be destructive with my hands. It is hard to explain this feeling or share exactly what it is and why frequently must just take a step back and just breathe and refocus. It sure keeps people from wanting to be around me.
Now don’t get me wrong. I am not an angry or violent person. I just have moments where I must try and regulate the things in my brain that ADS brought upon me that I have accepted and am learning to control. To me, the anger is a physical expression of the violation of my personal space and me. If I deprive myself of the right to express anger as my brain sees fit, I am depriving myself the right to set boundaries and provide a place I need mentally to feel safe.
I have set goals for myself this week, while trying to accomplish working without lashing out at anyone, running to some isolated place to cry or plain flipping out in public. I have done better than last week! For years, I hid it all well and no one really knew what was going on inside my mind. Most of us Aspies have learned such good acting skills that even those we love never truly notice. I know the many times I excused myself to a restroom with a look of urgency was taken as bad gastric stress. The walks I took to “think”, and the “resting in my room” were my ways of avoiding exposure to a world I live in, and struggle to control.
Why am I coming out more and blogging about my experiences? Because I am tired of keeping it in. Tired of feeling unaccepted by others, because I couldn’t even accept myself. I want to smile more out of genuine happiness instead of trained behavior to meet an anticipated or expected norm. Because I am trying to understand myself. For over 5 decades I just accepted and hid “ME” from even myself. Time to just be me. Sure, I have had so many family members walk away. I have had almost every friend I had bail on me. Luckily, I have about three friends who truly know me or are wanting to get to know the real me and don’t talk about me behind my back and feel I am just psychotic.
This has become such a hard journey over the past few years. So many wrong Psych diagnosis’s, treatments, therapies and meds and I have accepted who I am. I just wish more of the people who claim they love me, would accept ALL of me, without expectation, or restraint. I am an ASPIE, I can accept it, why can’t people let me not hide who I am and what the REAL me is like? Perhaps it is because My world contains so many people that judge a book by their cover? Perhaps I need more people like me, more people who don’t look condescending at others, that give me the insecure feeling that they look at me the same way, when I am not around? Sigh… Anyway I have rambled again enough about my journey to my diagnosis’s in the mental health department, perhaps tomorrow I will complain and explain the neurosurgeons end of my brain health that doesn’t involve how my marbles shuffle.
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