Thursday, June 8, 2017

Theatre Paranoia, Affecting others by being Different, A Personal Sensory Story, The Struggle to Show Up as An Autistic Woman, Sensory PTSD

I struggle with being in theatres and large public places. Especially with the current culture and news of the world in the last decade. Long before, in the time of my childhood, sensory overload would happen anytime I was in these circumstances, but we didn't understand what was happening. My parents and I would mistake the sensory assault for the flu, behavioural problems, IBS or any other number of conditions.

Large crowds equal numerous uncontrolled aspects including strange, pungent odours, loud unexpected noises, expected social norms, bright florescent lights, confined spaces, inability for quick escape ect. I was born with an old soul. I was born intuitive with my sensory aspect already a weak link. Couple this fact with autism wiring and most "normal" experiences have always been brutal on my system.

I have always believed something bad could happen in a theatre, and then it did, and my paranoia was tripled. I fight panic from the moment I step into the loud, dark, contained space. My therapist told me years ago that I did not need to attend theatres as part of my lifestyle and I could find ways to avoid the place, but our extended and core family are very media orientated, which makes this a little bit tougher. I already avoid so many circumstances and activities. Luckily, in today's age, there is more access online to media which makes it easier. Generally, I do avoid but sometimes I choose to go.

Wonder Woman was my recent choice. I felt the strength to go last minute and decided to make it work. Unfortunately, my experience was doomed from the beginning because as we were sitting down, a man walked in with a backpack. Every visual scenario I had seen in life and movies of bad situations with backpacks flashed through my mind. Every time I am in a theatre, I watch every single person who walks in and out. It did not help that there were also a few large, burly men who became increasingly drunk the entire time, were loud, and kept running in and out of the room. This put my high alert system on advanced alert.

I try not to let my conscious awareness of everything around me show outwardly. My husband didn't even know I was in my borderline panic mode. It did not help that the theatre was colder than usual, even though I brought a sweater. I honestly would pay a double theatre price to watch an opening movie inside my home. I don't understand why this is not an option for those with higher needs.

had about four full fledged panic attacks from the time we sat down to when we exited the building. Two were almost bad enough that I was picturing myself getting up and going out to...where? That is when I often stop myself. Where would I go? I would feel just as paranoid in the closed off bathroom. I would feel vulnerable outside the theatre and most places are closed nearby. Being alone is worse. I also do not relish forcing someone out of a movie they enjoy. I do not want the attention from my fellow movie goers or to cost them a ticket. I have only done this twice in my life when I was SO desperate I could not contain my emotion. So I forced my husband to walk out with me and cried for an hour after. The other time I was with my best friend from childhood and luckily she hated the film too (it was an unknown to us psyche thriller) and it took no convincing to get her to walk out. 

I KNOW in these moments that this is an internal struggle I have to battle on my own. Which is both isolating and empowering in contradictory ways. Once a panic attack starts it usually subsides within the 10- 20 minute mark but that ten minutes is a hell full of symptoms. I have little tricks I do to minimize the escalation of emotions. I engage in repetitive "normal" behaviours that remind me I am in my body and doing fine. I put on my hand sanitizer and smell the familiar scent as I gently rub my hands together, I rub my arms or legs quietly pretending I am cold or if I am cold to bring the feeling back in, I chew gum or drink some water to stop any choking feelings and to do something with my mouth instead of scream or say something dumb. I repetitively check the time and count backwards until the time we can get out of the theatre (even if I am enjoying it.) I picture being safe in my vehicle or home in my bed. I visualize, visualize, visualize. My eyes are wide open, taking in both the film and every ounce of my surroundings covertly, but I am also somewhere else in the back of my mind. I tuck myself in to a safe, visual place I have been before and tell myself, this too shall pass, I will be there soon again.

It's pretty intense. Fighting to normalize and not disturb the people yet trying to also enjoy the experience (because yes, I want to enjoy normal experiences too and some of it IS fun.) It is a battle most do not understand. I realize people see me and see a slightly quirky person but if they witnessed the internal struggle firsthand they would probably label me many unflattering things. This emotional struggle of sensory onslaught effects the physical body. By the time we finished the film (which I loved the acting and directing of) I had been holding my pee for an hour because I did not want to walk by the rowdy, burly drunks. My body was rebelling. I was in pain. My insides were trembling. On the way home I clawed my stomach a few times to distract from the immense pain (I had red streaks all over by the time we arrived home), but I think I came across normal (ish) because my husband did not even know what was happening until I wrote about my struggle the next morning. In these moments I can not often have the words to even form what I am feeling. I know what is happening but I do not have the reserves to EXPLAIN what is happening to someone else. It's a great game of pretend. I was often told I should be an actress. Isn't that what most people do in life? Play and pretend? I genuinely show up as I am to almost everything BUT the sensory, that is when my natural armour of acting becomes an automatic pilot response to survive. It's also important to me to try to make these excursions work occasionally. I want to be able to show up to a few moments in life in a way most of humanity can understand. Sometimes it ends up fine...but I don't engage in stretching circumstances as much as I did in my childhood.

Growing up I was always sensory sick. (See HERE and HERE for more.) With sensory sickness a low grade fever develops (a phenomenon that I have literally proven but still is not recognized by most doctors), I fluctuate between hot and cold because my body can not regulate, I tremble and won't stop shaking, everything hurts, my bowel goes ballistic which is the most painful part of the attack, my ears ring and I feel floaty, I get a migraine and feel so thirsty but can't drink because drinking hurts my stomach and causes me to want to violently puke. I want to escape into sleep. Yet, I can not because ironically, even though I am feeling so many bodily ills, I feel strangely disengaged from my body. My mind can not get in sync with my body so I don't sleep until I am basically snuggled into my husband so tight that I am almost suffocating him and then I focus on his breathing instead of mine because mine is too confusing.

My body betrays me because I previously betrayed it. That is the basic issue. My body is past the point of understanding what signals are "right" or "accurate" and what are "misfires." My mind convinces my body that I am in danger. It is an equivalent to actual shock. My body thinks I am in shock and that I had a traumatic experience. Technically I DID have a traumatic experience (sensory wise) because the autistic brain cannot separate that from true trauma. Thus, the body does the exact thing it would do in a traumatic experience.

This is severe sensory panic. All humans experience sensory onslaught or overload to some extent at least a few days out of the year, but Autistics get the joy of regularly having "ordinary" experiences turn into purgatory. The next day is like a hangover...and a whole heck of a lot of trying to not feel guilt or shame or 'less then those normal people' and make decisions that work for everyone without paying too heavily for what was beyond control. As a child I was often put in highly emotional circumstances, showing up where basically zero of my extended family understood what was happening to me. This part of me was not understood well because there were not supports to help. This was also partially my fault for "normalizing" and pretending so well. Even my husband, who is well versed in this aspect of me, is still blindsided when he hears what really happened from my perspective, in a situation he thought I was doing just fine in. So I can not blame others, who knew me even less intimately to actually get it. Plus, most of one side of the family were S types. (Click HERE) As I have mentioned, S types like to show up, be there, and stay in sensory experiences as bonding. Thus, I was thought of as unusual, cold or selfish. There are always numerous factors to misunderstanding and I can not put the full blame on anyone or anything.

I truly believe that with enough of these forced circumstances and sensory overload, a person can end up with any number of permanent chronic conditions or diseases. Dis- ease causes disease. Autistics who are not understood, are not given agency or choice and who do not implement boundaries WILL pay for their expected conformity into society, even with 'simple' expectations like attending a birthday party. "Oh you can just stay for ten minutes...just give the person a hug and show them you care. It will be fine. You will be fine. It's important for you to be there." Such statements are damaging long term. Because they are untrue. It IS a big deal. Ten minutes is the same as an hour if the experience carries the same sensory elements. The body responds to trauma in the same PTSD fashion it has in the past. There are ingrained triggers in each unique autistic person. We all have them differently but they are there. To ignore them is basically to devalue US. Statements such as these are saying, "Your experience is not legitimate. You do not know who you are or what bothers you. We know better. We expect you to show up in this way and if you don't you will not be loved nor be able to convey your love to us." If someone actually said that point blank it would be considered verbal abuse, yet these messages are given over and over to people who are wired differently in the world.

"I never said you had to offer me a second chance, I never said I was a victim of circumstance. I still belong. Don't get me wrong. And You can speak your mind but not on my time."- Billy Joel. "I don't need you to worry for me cuz I'm alright. I don't need you to tell me it's time to come home....This is my life. Go ahead with your own life. Leave mine alone...."- Billy Joel.

The lyrics above are powerful to me because of my history. When I explain situations like this or moments where I am vulnerable I am not asking for people who have misunderstood me to give me a second chance. I am actually writing for those who have not discovered this aspect about themselves or who need validation in their being. I am not just a victim of circumstance, even though these circumstances HAVE contributed to my life, but I have found ways to cope and I will honour those ways. I always feel for the people I see in specialized homes who are forced to do jobs to "make" something of their life and have someone babysit them all the time. I know, in some circumstances, I AM that person, but I feel so lucky that I have my own freedom. I believe people can speak their minds whenever they wish, just as I can, but that they no longer need to waste my time with their opinions if I am not in a relationship with them. I can chose to walk away, close the browser, ignore ect. I feel for those with special needs who have to live their caregiver's versions of LIFE. I often will yell out the lyrics of this song when I have recently been disempowered.

So what if someone wishes to spend most of their life in their home? So what if the autistic child just wishes to watch Disney over and over again in their basement. That is THEIR life. If they have the means to support that life, or someone else is willing, and they are LEGITIMATELY happy, their life IS a success. Yes, we need to be taught basic skills of survival and it IS empowering to be able to learn whatever we wish to learn, but in the end, if we still wish to not feel sick, and find ways of living that avoid being sensory sick, it does not mean we fail at life. What it means is that we are honouring our lives and if we can make it work, even if we barely scrape by, and we feel pretty good about it, THAT matters. The people who can't love us like that, never loved us authentically anyway. "Too long I've been afraid of losing love I guess I lost, well, if that's love it came at much too high a cost."- Elphaba from Broadway's Wicked.

I love the people in my world. I WILL make sacrifices for them if they have also made sacrifices for me. But my choices have to be sacrifices that I CAN handle without too much PTSD. I will show up, but often I will show up the ways that are truly ME. That means writing something, sending money of my own if I can, making a fun playlist, sending a video, or engaging in deep conversations or sending links of thought out advice. I may not show to their gathering or even their funeral. Most likely I will not and if I do it causes me weeks of therapy and sickness...and in turn makes my family pay. But I will be there, when I can, how I can, if possible...but this means there will be less and less people in my world. Because even if I gave fully to ten people, that is still a lot to give. Maybe people who are sensory strong CAN spread themselves thin and show up in more physical ways. I admire that but not enough to become what I am not. I am a woman who has both strength and weakness. I can be confident enough to claim to "drown oceans (CLICK)" and walk away from situations that I no longer feel the need for. I am also wired differently and have moments of intense self scrutiny and immense PTSD. I can be both. I can still be worthy as both. I can love the very few who understand and whom I will give most of my life for.

I understand judgment because I have been judged. Too often found lacking even with the best of intentions from people who truly DO love me. Such is life. Such is the culture we find ourselves in. Which is why, even though I intensely observe and notice most nuances, I am not a judger. I find most stances and ways of being in life legitimate, and those that are truly wrong, I also see how they came to BE. I understand without encouraging the behaviour. (Spoiler alert for Wonder Woman ahead) At one moment in the otherwise disappointing third act of Wonder Woman - the first and second acts were incredible!!( spoiler ahead) she stated, "Goodbye brother" firmly yet compassionately with respect while ending a life. I understood that moment in it's complex contradictions. It is what women ARE at their core. A mix of strength and vulnerability. More so, it is what I feel I am being wired differently in a world full of sensors and people who believe that showing up physically is the most important aspect of being human.

The day after my theatre experience was a complex mixture of pain, introspection, happiness, fears, insufficiency, being enough, and struggling to the beauty. This happens time after time when I am put in these situations. A constant questioning of who I am and where I belong. But in the end, I always come home to myself. I celebrate the worth that I am because I exist. And when I don't exist anymore, there will be others who embody this. They are worthy because they exist. You are worthy because you exist. That is the conclusion I get after each theatre experience, so in the end, while it may cost, I also find something worth taking away.

Song Choice; To Learn Her- Miranda Lambert, My life- Billy Joel ( Glee version) "I never said you had to offer me a second chance, I never said I was a victim of circumstance. I still belong. Don't get me wrong.  And You can speak your mind but not on my time."  Hey Jude- The Beatles


calledtoquestion said...

I love you babe. You do what you must and when it gets hard remember I am, and will be , always by your side. By the way you look stunning. You are my wonder woman.

Anonymous said...

I could have written this. I try to explain this and I think he gets it but it helps him to understand better when someone else writes about it. I used to read my husband your blog posts and will read this one....My idea of hell. I get the selfish, and cold thing...there is a price to pay for just "being". It gets wearisome. I never leave my house and if I do, I go through this, too. and I want to do normal things ( not much for myself but for my family). I can't visit my family a province away because its constant sensory overload and no place to recover nor do they get it cant be controlled.- G

Kmarie A. said...

@calledtoqueston: Thanks:) Love you too. xo

@anonymous: Yes it always helps to hear someone else write about it. I am constantly reading my husband articles ect. I LOVE that you have used me as a source!
My idea of hell too. Im glad you get it and I think each person has there own payment for being but some are more pronounced as minorities. it can get wearisome. I hate leaving my vicinity too. I feel the same ( wishing to do normal things) but its almost impossible. I also cant travel like that anymore and you are right, there is no place to recover or have people understand it cant be controlled. Sigh. very tough in that regard. xo

S said...

I get you totally. I have been through these situations. I had to walk out of a movie hall recently.Also enclosed restaurants, many times. I used to feel physically incompetent in these moments but later on, I felt good because I can see that these places are not "natural", there is a lack of proper air flow and breathing space-so, artificial surroundings are not good for my sensory or physical health and I would rather be at home. Since it does not involve any one else except my husband, so far I am lucky. I dread to think what if there were other people with me in these situations ? Many relatives insist on socializing with me and I had to cut ties with them the hard way, because they will never understand. After so many years, I know it is the hard way- a way where I am the only one against many who do not live a life like me. Worst of all is that our health will start to suffer more if we go on like how others are going. So, we have to study our body's needs, our sensory aspects and create a lifestyle that boosts our immune system according to our physical and sensory needs. Also for our soul and mind, we need to take it slow,meditate,read or just basically "introvert" to feel good about ourselves. The more stressed we are, the more our well being deteriorates, I think. So for us, taking it slow even if we work and understanding our inner world and not giving in to the demands of society/majority will be more beneficial I think.
I also think that in the future, more research will be done on sensory health or hsp health and wide range of medicines or alternative therapy will be developed to support different kinds of sensory systems.

Kmarie A. said...

S: I am sorry that happened. Yes we are lucky when we have people who understand. I also felt incompetent so it is nice for you to point out that they are not natural... I have also had it happen at restaurants.

ME TOOO! I have had to cut a lot of ties not out of lack of love but out of the fact that there will never be that understanding. It is the hard way.

You are right we do need to study our bodies needs and honour that. I agree so much. and a definite yes to the research too!

Anonymous said...

I don't like theaters and haven't gone for years.. one of the main reasons is my legs can't handle it. I have high anxiety going to public places... even though we do trips and I enjoy travel I fear every time that we will die. I don't sleep well anywhere but my own bed. My coping is that I need smells to help center me.. I have this hand sanitizer that smells like lavender.. I spray that on and smell it a lot when I am filled with anxiety. All of these things you mention about trying to appear normal and do things and trying not to distrupt others fun I totally get 💗 I was very put down as a child with things that I needed to cope and still my family back in the Midwest does not understand me. To get through things as a kid without freaking out I would imagine that someone was holding a gun to my head and that if I didn't do what I needed too I would die... this oddly helped me focus and get through things.. probably has to do with past trauma I had to endure as a child. I can only spend a day or two with my Midwest family before i start having major anxiety... mainly I deal with that when I have to by eating everything in sight even if it makes me feel horrible. - K

Kmarie A. said...

K- i'm sorry you were put down as a child especially for your needs… I understand that aspect to and I had trauma as a child onto it is especially tough. I would have major anxiety too. I'm glad you understand my theatre aversion although it's not fun for you either… But it's always nice not to be fully alone...coping mechanisms are literal life savers for us who have lived through sensory hell....xoxoo

Ashe said...

Sensory sickness S-U-C-K-S. I hate it. I've had to leave work early before because sometimes it will just hit out of nowhere. If it goes slow I can usually counteract it, but when it wants to be sneaky, I just hope I can get home quickly without violating any traffic laws. If I'm at home I can just face it head on. And of course, try to wage an internal war without drawing attention.

Strangely, so far all I've developed is sensory anxiety. Or sensory resentment? I spend an inhuman amount of time glaring at inanimate objects. =P

Kmarie A. said...

Ahse: Sorry it took me so long to get back. Yes it sucks. So much. It is sneaky. I still get hit out of nowhere sometimes. Yup an internal war without drawing attention...yikes...Lol I think I have sensory resentment!!! LOl I do too!!! glad someone gets that!!!