Energy to mask is missing. Must maintain some sense of normalcy. Wish to be abnormally normal. Read my mind, not being unkind, just drained. Straining to keep a straight face. Wish this waiting room was as empty as those cracks in the floor. Wish I could look up to see the time. To see the clock staring at my insecurities. The hands rotate to imitate my unconscious stims. So difficult to determine what’s going to happen next. Why is he still talking to me? Such small talk, such big bulky words for no reason. This season is unmasking for no reason at all. Plan an escape. Make way to the hallway for a bathroom break. Yeah, if he keeps being normal, I will flee to safer shores in stalls and writing on nasty walls. Where smells swell from deep dwelling places. Perhaps I will stay here. That sounds worse than a curse from an old lady with green teeth. Why so hard to be normal today. Why is this mask so heavy. This smile so fake that it breaks my heart to lie like this. This deceptive grin is against my religion. 15 minutes of waiting is carrying the weight of 15,000 thoughts made of shame.
My mask has a leak. I am sure of it as the clock continues to peak and peer right into my abnormal. Those hands just don’t move fast enough.
Am I next? Count the feet. Yes, only four left. I must be. Voices of calm are fading into the walls. I am going to make it this time. I am next! Whew!
One appointment and done. Small drive and still alive. So why am I Drained like the first breath after the last step of a marathon? Why is this mask so full of holes, getting so heavy? Just wear the T-shirt as a flirt with social norms. Alone is not all bad. This clock in my own house stares at me. It has seen me before. It knows what time it is. The alarm of taking off the mask is beyond snooze control. Today, I am too tired to be anything but maskless me. Maskless for recovery. I have another appointment next week. I hope I recover in time to make another mask. I hope I discover in time to fake another task. Until then, I am going to stare back at this clock until I know what I really look like.
Had my psychology appointment last week. Just when I thought it was safe to get back into the writing…a wrench was tossed. A new study was launched. New doors were opened. New answers to old problems and just maybe a few more initials to add to the seemingly ever growing list of issues. Most recent Autism Spectrum Disorder.
I was always on a pursuit to see if all the underlying issues were somehow magically connected. No sooner did I give that up and blog about acceptance of the Bipolar did this arise. Was she just waiting in disguise for my surprise acceptance to issue the next challenge? Perhaps! So I was tasked to research, as she knows I will anyway, to make the connect. Here are some recent but astonishing findings.
I have historically been diagnosed with Marfans Syndrome, which is a connective tissue disease. I also deal constantly with IBS and acid reflux. I also have severe anxiety issues that present all across the anxiety spectrum from somatic issues to panic attacks and everything in between. Still not enough, add Bipolar 1 and PTSD from a host of abnormal life twists and events. So what is the connection? Maybe Autism.
I know, right? But…how could this have been missed? Isn’t autistic behavior seen at a young age? In fact, I am quite certain that you have to be diagnosed before age 2 or 3 for most, not 50!
Come to find out, with still so much research to do, that “syndromic” Autism can be found much later in life. With 50% of the cases being what I will call “classic” Autism, that is to say, Autism as I read it in the DSM 5, there is another 10% with genetic factors. These genetic factors or the syndromic Autism is my new field of study. Obviously not much out there, and seemingly even less consensus. Much like the C-PTSD, which is not in the DSM but still readily spoken about by professionals on blogs and posts.
Now what? If it is true, I have a long awaited answer that connects ALL of the small mysterious dots. If not, I continue to explore and just be abnormal with one less label.
Interesting fact, at least to me, is that so much of my research kept ending up on Autism Spectrum sites. I study Anxiety and end up there. I study IBS and end up there. The kicker was searching for more info on Marfans syndrome and yet again end up there. Thanks to an article, that I need to find again, which showed the results of a study for Ehlers-Danlos syndrome and it’s connection with autistic symptomatology. Ehlers-Danlos is a connective tissue disorder similar but different than to Marfans syndrome. Similar in the connective tissue disease but different in presentation. All of that said, I have a few questions.
1) Is the genetic presentation of autistic symptoms still considered to be on the Autism spectrum or as a symptom pattern of the underlying genetic disease?
2) Is high functioning Autism a reality or just spoken of like C-PTSD?
3) What is the treatment plan for such a mixture of madness?
4) Is social awkwardness and language deficiency a must or merely part of a whole that may or may not be present?
5) Is it better to ask five questions when four was sufficient?
Light fades every evening. Scholars say the sun sets in the west and yet, everyone knows that it doesn’t. Why do we accept this curious lie as if…as if it’s ok to say what we always say even though it’s untrue.
Yes, I am fine today thanks for asking! I am light fading over mountains and disappearing over streams. I reel in my rays at days end. I feel in ways that plays against logical sequence. I stand still but turn on axis I. Or maybe II. From manic day breaks to personality nightmares.
Yes, I am fine today. Thanks for asking. Just as I sit and wait for the flaming gas fire to set against all understanding. As if…as if I knew the soul of the sun. It runs upon itself until itself is no more. I guess the sun will set after all. Then I will answer differently. No! nothing is ok. Thanks for asking. I just was unaware as I was entranced by the sun that rose as red rays against common sense and I was completely unaware of myself.
So we wait, I and the sun, as we face the final setting. The day that breaks never again. The night that will never end. I am fully aware that I will never see the sun face to face. But I know that I don’t know how I feel today. I know that the sun never rises or sets but I just don’t have any feelings about it. That’s the truth that the lie can’t accept. That’s the logic that is illogical. We must just accept delusion as if… as if I was the sun running on myself until…until I set. Yes, I am fine, thanks for asking.
SSI should adopt a better model for communication. To send out threatening letters to unsuspecting and disabled people can not be the best way to get in touch. Who wants to open a letter, after doing nothing wrong, only to find that the funds may be cut if…Why not just send a friendly letter that explains things first? For example…
“Salutations valued recipient, we are writing to update our files and would enjoy speaking with you on …at … in the afternoon. Thanks for making time to help us help you. The information we will cover is as follows…The call will take less than 15 minutes and is necessary for us to ensure some details. This is a routine update and everyone will have an appointment at some time.”
Obviously I was being moderately sarcastic but the point remains, just ask! Threats are unnecessary and puts people on defense before the offense even happens. Perhaps their blanket threat letter can be used for those who missed calls or appointments as a last ditch effort. Knowing the blogs that I have read, no one wants to be threatened every time info is needed. Positive reinforcement still works. Many people on disability have anxiety disorders and those letters can cause a worsening of symptoms. Those fighting depression can fall deeper in that abyss of darkness at the smallest thing. Something like all of your income will be cut if….
Not professional at all SSI. We expect better. As a bit of advice, perhaps hire people persons for jobs that deal with people. Perhaps train people that they are talking to people who may be hanging onto life, so yelling and arguing about numbers, and demanding clear and concise thinking on call, is just not always possible. If it was, we would not be considered disabled. SSI remember the mission, of you have one. If not, I suggest something about helping people rather than saving pennies! Create another letter that doesn’t threaten people. Just ask, that’s what I am doing now. Just asking.
From organizing everything from closet space to little cars that race, I made haste to even things out. Symmetry is the key phrase that unlocked the door to why if I got hit on one side I would turn the other cheek. Not as a humble man, but to be hit again or feel pain of breaking the evenness. Not a fun thing when the older brother realizes the secret of symmetry and constantly uses it against me. A hit and run. A hit just for fun to see if I would hit myself to even out the pain. I did. I was a kid.
Two score years later I still sense the symmetrical tug. In order to keep things together but equally apart. It started with a look in the reflection which showed dissatisfaction at the lack of symmetry so obvious to me, and pointed out constantly. Even thinking occupies so much space, often it’s hard to focus on the things at hand. Like my hands have different lines to the point I was going to cut one to even the sight. When will “Even” retire for the evening? I read a solution is to tap one side and suffer through the uneasiness of unevenness. I am starting a petition to have their license revoked.