Tuesday, July 3, 2012
There are a million reasons why I hate being sick that I won't go into here.
But I have always hated it. And I have always reacted to anyone mentioning being sick or being around sick people in the exact same way that Sheldon does in the above video.
When Marcy and I watched that scene, she almost peed her pants with laughter, as I sat there, saying over and over, "What? What? What?" (Which happens a lot when we watch that show actually.)
Right now I am fighting off some germ or another and it actually makes me angry.
Seems rather...irrational, doesn't it? To get angry over something so normal and natural.
But there you have it: Being sick makes me downright angry.
And finally we know the foundational reason for this anger: Being sick disturbs my routine.
Routine is super important (understatement) for this Aspie brain.
Sick = no routine.
Since I am sick as I write this, I really have nothing left to say.
Thursday, June 28, 2012
|Sunset, Lighthouse Beach, Erie, PA|
As I write about in my "my monkey brains" section, my partner, Marcy (or "Frog"), has been helping me attempt to organize this different brain probably since we met. She was the one who, eventually, with her background in education, figured out what was actually going on as we made our way to the Autistic truth of my brain.
She figured out that I worked best with visual schedules and cues, for example. (And I will write about these in the future.)
She also figured out that for me to go out into the wider world could be, well, a bit challenging, and maybe there was a way to prepare better.
And thus came the idea of an "Aspie Emergency Kit."
My main Christmas present last year was the core of this kit: my Kindle Fire.
Books, television, internet, and stimming/soothing games all in one tiny, perfectly sized and weighted unit.
Also in my kit:
Headphones: Often the world is TOO LOUD and putting on headphones and listening to Brad Mehldau or Philip Glass is a great, calming remedy.
I have, for example, a really hard time when I go for my haircut and color. There is so much miscellaneous chatter in a salon. By the time I go home (and this is not a judgment of chatty people...that is what they like to do...chat)...but by the time I go home, it can feel like my ears are bleeding, which sounds dramatic but that is what it feels like to me.
The headphones with the right music save me from feeling bonkers.
Bach's Rescue Remedy: This is a little homeopathic trick for calming. And it works. If I am feeling highly agitated, a bit of this under the tongue makes me feel calmer within twenty minutes.
Squeezies: I have a collection of small squeezables. Just soft, plushy sorts of things that I can hold onto and squeeze for dear life. It's grounding.
Paper & Pen: Always. Tons of it. All over the place. In all my bags, in the car...everywhere. Just writing myself some notes can help alleviate stress.
Lavender: A lot of the time, smell triggers me, and smell can fix me, too. This smell is known to simultaneously calm and stimulate the brain.
Notes: Often Marcy writes me little notes and reading her words -- even old ones -- can bring me back to myself.
Scarf: A scarf around my neck makes me feel secure. Summer is hard for this but I just replace it with well-fitted clothing in general.
I am also learning to be over-prepared for weather. For cold. For rain. For change that doesn't seem like it will come.
If you have this sort of kit, what do you have in it? What do you need to have in it? What issue have you not figured out how to solve with your kit?
Tuesday, June 26, 2012
|Sunset at lighthouse beach (2 miles from our house)|
When I first learned about my Aspie brain, an immediate result was a change in how I perceived my bouts of depression.
First of all, these bouts had gotten fewer and farther between since I had returned to my natural born Special Interest of dance.
But there would still be Those Days...
Then I read and read and read about this particular brain and came to the conclusion that what I had labeled as Chronic Depression for my whole life was actually an out of control, misunderstood symptom of my brand of Autism.
This changed everything for me. I felt free of the burden of the depression label.
I would have a bad day, sure, but I saw it as part of my neurology and not a personality defect or a "sickness" over which I had little control or the result of trauma from which I was not healing "properly."
This allowed me to tolerate it and just "ride it out." Inevitably, it would be gone within a day or two, because I no longer just sunk into it and drowned. I saw it as temporary.
I see these days as temporary.
But they can still feel like CRAP and they can be startling because they happen so infrequently.
I had one of them on Sunday.
And it turned into a real Pity Party.
You probably have had a similar sort of Pity Party: "I wish I had a 'normal' brain. I wish I could socialize and go to parties and listen to music in bars without melting down. I wish I could be busy like other people and not need so much recuperation time. I wish noise/smells did not cause me physical pain and make me angry..." and on and on.
Basically, variations of "I suck."
Luckily, I had to go teach a Kundalini yoga class, which started the coming up for air.
Then my partner, Marcy, and I went to the beach to watch the sunset.
There were about two other people there. Not anywhere near us.
There was NO WIND (a major rarity for this area).
Just bird sound and the gentle lapping of our Great Lake.
And a stunning, breathtaking, slow sunset.
We ate grapes and munched on trail mix. I took a ton of photos. We squished our feet into the gravel-y sand, and let the soft water wash away the day.
Just being near the lake is a big stim for me. (I don't mind the word stim...I kinda like it. I know it may offend some others, but I don't really care.)
But being near to the lake, having it be so quiet, no people...that was utter perfection.
It soothed me enough that I could feel myself return from that Pity Party. I could feel myself inside myself, solid. I could hear myself thinking clearly. I could remember that I actually like this brain.
Friday, June 22, 2012
That is a photo of the main room of my yoga/dance/play studio. I always teach from exactly the same spot -- in front of that center pole, facing away from the windows.
The windows give me too much information and I need to focus when I am teaching.
Sometimes, my clothing also gives me too much information.
This has been a lifelong issue for me.
The happiest I have ever been with clothing was the brief period when I went to Catholic school, and I woke up every morning to the same exact outfit that fit just right.
I have been teaching for about three years now, and it was only about a month ago that I finally figured out my "uniform."
I mean, it took me about a year to find the right, um, underclothes.
Then I kept buying and wearing yoga pants, but there were too many days when I would just stop and start yanking at them, eventually letting out yelps or going on (somewhat inappropriately timed) rants about how they felt to me and how much I hated them. (Oh, the drama!)
I decided to give dance clothes a try again but the leotard! What a pain in the ass! In a few ways...
FINALLY, I realized I could wear the tights with little shorts and an under and over shirt.
See how complicated it can be!?
This is mostly due, of course, to my sensory integration difficulties. The smallest thing can cause such distraction that I can barely function.
I forget this sometimes.
And thus the title of this piece: I went to class the other evening and decided to pull on some yoga pants.
I refused to change even though I didn't feel quite right.
On my way there, I figured it out: Yoga pants have seams and I can FEEL THEM on the insides of my thighs.
Tights do not have these seams.
At the beginning of class, as I was fidgeting uncontrollably, I let out one of those YELPS! and said, "If you hear me growling, it's at my pants!!"
I'm not sure how many yoga/dance teachers actually say such things...
Friday, June 15, 2012
The other day, Marcy was out and about doing something social. ((eep!)) I was at home, doing my own thing. We were texting here and there, and I thought it would be fun to send her a photo, so I started trying to take a picture of myself with my phone.
At first, I was like, "WhAT!?" Then I kept upping the "pleasant" quotient each time I snapped.
Or at least I thought so.
Every photo was the same, no matter what I though about, no matter the face I thought I was presenting.
I finally gave up.
Every photo looked a bit like the one above...though truth be told, I took a bunch before I came to this one that I thought was representative without being totally, embarrassingly, beyond acceptably revealing.
This photo, I look a little blank.
In the others, I looked a lot grouchier.
Even when I was trying to think about happy things, trying to LOOK happy.
Here's something funny: I know I have the capacity to create affect. I went to college as a theatre major, for goodness sake, and I am a gifted actor.
When I teach, I use this acting ability and it's something people definitely respond to.
I turn it ON.
Then it just turns OFF, apparently.
When I am not "on stage," my face is a blank slate.
A couple of things: Firstly, girls with Asperger's are often invisible, because as females, we are better at mimicking acceptable social behavior. This is obviously a case of that to the extreme. I learned to mimic but only for the stage, only for a purpose.
Which is funny, because a basic aspect of my Asperger's is that ALL THINGS MUST SERVE A PURPOSE.
Secondly, whenever I was first learning about my brain and I would come to the parts about autistics having less affect, I would think, "OH! THAT is ONE thing I do NOT present with!"
BIG GIANT HA!
Thirdly, I think back to my younger life and how many times I would get so PISSED off, because people were always telling me I should smile more.
The young feminist in me would rant about women being expected to be PLEASANT all the time, and my face is none of your damn business (both of these points happen to also be correct...).
BUT...I see now what some of those people were talking about.
My blank could easily be mistaken for not just grouchy but downright SAD.
Which I'm not anymore.
I'm rather happy, actually.
But as Marcy would say, I am also a Very Serious Animal, and that is okay.
Wednesday, June 13, 2012
(The following Aspie issue that I struggle with can be related to a few things. For more information on these ideas, click on them: Theory of Mind, Executive Function Disorder, and perceptions of time.)
I forget the most basic things about my life on a daily basis.
I forget, if Marcy does not remind me regularly, that we, as a couple, are the foundation of each of our individual lives. This is not some co-dependent neediness. I truly get befuddled and cannot remember. It usually happens when we aren't getting enough time together, and for this brain "NOW = FOREVER," so that if we aren't getting enough time together, it must mean we are not really together.
Because again, whatever is going on RIGHT NOW, my brain thinks it will continue to go on ad infinitum.
This sounds, I'm sure, beyond weird to anyone reading this who does not have this different sort of memory.
I can remember the most esoteric little facts about my special interests, but I can't remember that Marcy and I are the foundation of things?
Another example: I forget that I love dance -- my life's driving purpose.
I get so caught up in the confusion of running from one teaching gig to another, writing blog posts, keeping track of all the little details of my "working" life, that I forget that everything I do comes from this intense passion for dance.
The very thing that is my Special Interest...I FORGET that it is my special interest.
Forgetting my foundation, forgetting my special interests...this all leads to confusion and confusion leads to anger.
I have thought about getting tattoos that remind me of basic things, but I would forget to look at them after a while. They would just become part of my visual landscape...and once that happens to something, I stop really seeing it.
So...how does one remember to remember what is important?
This issue has caused so much frustration in our lives, but I think I have developed a way to deal with it that has, within a few weeks, shown great promise.
Since I have started doing this for myself, my emotional life has been steadier. I am more relaxed in general.
I am using some basic technology to help this brain move through the day, remembering basic things.
I have scheduled pop-up reminders on my iCal.
Normally used to keep track of my schedule, I now use iCal to remind me of what I should remember.
I have a wide variety of reminders that are anywhere from one to three sentences. I have some that pop up every day and some that pop up a few times a week.
For example, at 7 PM every single day, (because I am sure to check this computer before my bedtime bath), I get reminded that "It is okay to just be happy."
For someone with my brain, the world and life in general can feel precarious, threatening, scary. Autistics tend to have persistent anxiety issues.
But when I see this pop-up on my screen, it never fails to make me take a deep breath. I feel my whole body relax just from reading those seven little words.
And every single day, it's like I am being reminded for the first time, and I inevitably say to the screen (out loud, of course), "Oh...right..."
Thursday, June 7, 2012
I am having a couple of those days when I am exhausted and then I become exhausted by that exhaustion, by myself, by being me.
Having only come to know my Aspie brain in the last many months, I have spent a lifetime "passing." Girls/women on the spectrum are especially good at passing, at mimicking acceptable social behavior, at pretending to be "normal" in terms of interests, desires, needs.
As you can imagine, this is like being on stage 24/7 with barely a moment in your dressing room to relax.
My exhaustion makes sense.
But it continues to perpetuate itself.
There is no, "Oh, I am an Aspie and now I am totally MYSELF and FREE!" button that I just could switch on.
Nope. This process of learning about this brain is a process (and thus its name). It is an uncovering of all the ways that I was pretending, all the ways that I was stifling my true self in service of cultural and social norms, assumptions, requirements.
This uncovering takes a long time.
Then once you uncover some "rule" of "normal" that you were following out of obligation, there are still many steps to take.
You have to figure out what the heck would be your "natural" way of being/doing.
For someone who has spent over 40 years covering up those natural inclinations, it is a difficult thing, to say the least, to even fathom what that natural way would be or feel like.
I do not know my own mind, in the most literal sense.
Here is an example:
For all of my life, I observed the couples by whom I was surrounded. It seemed to my limited understanding that to be a couple meant to do everything together all the time. If this did not happen, my black and white brain said, then it must mean you are no longer a couple. Or at least, people will begin to wonder.
So I would force myself to do things that simply held no interest for me or over-fried all of my circuits and sent me into a trance of nothing for many days after.
This was not productive or comfortable for me. I brought nothing to the events or people that did this to me. I made Marcy worry -- worry about me having a melt down before, during, or after said event -- worry about my energy levels for the things that really mattered to me. Worry worry worry.
Why was I doing this?
Because I thought it was what was expected of a normal adult.
Marcy helped me to see how self-destructive this really was -- and how other-destructive.
She gave me permission (in that way that loving people do for us) to just be myself.
"You don't need to do this..." She would say over and over.
"We are allowed to be ourselves. We are allowed to determine what our loving relationship looks like for us."
It took me a long time and I am still working on this, but I am starting to understand and I am starting, just starting, to see that there are domino-like implications for just being myself.
Now before I agree to do anything, we review...do I really need/want to? What will the event be like?
Are there too many people, too many smells/noises/etc.? If I still want to do it, is there a way to make it easier? Are there aspie emergency kit items like ear plugs that would help?
Negotiating the neurotypical world can be exhausting, but we don't need to continue exhausting ourselves by forcing ourselves to not be who we are.
Tuesday, June 5, 2012
|A favorite of our peonies, Sarah Bernhardt|
I am by myself, but I am looking out toward a sidewalk upon which my Best Friend is playing.
She is playing with...another person.
I am feeling deeply lonely. I do not understand why she is playing with this other person and not with me, but at the same time, I know I do not want to play with them.
I want her to myself and do not understand why she does not feel the same way. I feel betrayed and abandoned.
At this time, I realize something about myself: I realize that I feel deeply sad and I tell myself this is how I will probably feel for a very long time. This sadness is not from my friend but from the house that sits behind me.
The house behind me and the sadness it engenders in me simply forms the context in which I find logic in my friend's perceived abandonment of me.
Fast forward to me, age 43, and I am still this 8 year old not understanding the complexities (or are they "simplicities") of "friendship."
Before my partner, Marcy, and I knew what was up with this brain of mine, I think this was probably one of the most utterly frustrating and confusing conversational walls she and I would hit.
I could not understand her need for anyone but me in her life, and she could not understand how I, a seemingly "fairly normal" adult, could not understand the very nature of friendship and the human need for it.
Knowing what is "up" with my brain, of course, does not eradicate this wall, but we can now stand at the wall together and see all its parts, comment upon them, discuss them, and not feel so estranged from one another as we have in the past. Now the wall is not between us as much as it is something we come upon together.
We came upon this wall just this past weekend.
To be honest, we come upon this wall many times a week, because no matter how much we talk about it, I and this brain will never (as far as I can tell) understand this neurotypical need for socializing that is random and trivial (as far as it looks to me) and has no agenda and is purely about "bonding" as "friends."
I am sure there are people reading this who consider me their friend and so this might be very confusing to them.
For sure, there are many people about whom I care deeply. About whom I worry. With whom I share happiness.
In my mind, these people (and blood has nothing to do with this) are "family."
In my world, you are either acquaintance, student (or other role in my life), or family.
I cannot explain this any clearer and wonder how other adults on the autism spectrum feel or think about this problem of friendship.
I will be writing about this particular topic much, much more, as you can imagine it causes much stress and pain, though it is getting better as I attempt to "let go" and just trust in the thing that is between me and other people without worrying quite so much about what it's called.
But then, as I write that, I feel a surge of anxiety over why Marcy feels the need to go off and play with others...
Growth is surely a slow and arduous process.
Thursday, May 31, 2012
|Glass Brain from Corning Museum of Glass|
A story I like to tell about my brain: many, many years ago (MANY...as in about 21), I had to see a neurologist for some minor eyesight loss due to a migraine. (Very minor -- my eyes have compensated and I only notice the missing chunk in very specific situations.)
They were trying to figure out why this happened. (Gasp! They never did.) I got rounds of tests. Lots of tests. Eventually, I was sitting in the office of a neurologist who was looking at my MRIs.
"Well, you have the smoothest brain I've ever seen...none of the typical surface imperfections..."
I like to tell people that: I have a smooth and perfectly surfaced brain.
So this glass brain called to me.
Now I will picture my own brain like this: quite beautiful on the outside but, well, like a book -- you can't judge this brain by its cover.
My brain can be challenging and I'll be writing a lot about that in this space and how we are constantly working to come up with coping mechanisms that allow me more comfort and ease in my day to day.
But today I wanted to write about the beauty of my brain. There is much that I love about this aspergian grey matter.
Until I knew about my Aspie nature, for example, I thought that everyone had deeply intensely passionate feelings about their special interests.
I am learning that NTs don't even necessarily have special interests. This is beyond confusing to me.
I thought everyone around me felt the kind of Big Awe I feel on a regular basis about life and the mystery of life and the beauty of it All.
I assumed that everyone had intense conversations with themselves every day. Out loud.
I assumed that jumping up and down and clapping with Extreme Excitement was part of everyone's response to something fun or new or interesting or funny.
I didn't know that most people no longer SQUEAL by the time they are my age, 43.
You get the idea (or maybe you don't).
When I am feeling a bit of self-pity about my difficulties with Executive Function or my inability to understand simple concepts like friendship or my need for "too much" (in my opinion) downtime, I try to remember these shiny amazing things about this brain.
It quickly brings me back to my reality: I would never give these things up in exchange for the other.
I only know one way of being -- mine. And I happen to like it.
Tuesday, May 29, 2012
Imagine that for your whole life you thought you were a cat living among other cats, and then deep into the middle of your cat life, you learned that you were actually a fish.
This would explain a lot, like why you were always feeling out of place, why you were always exhausted (a lack of water will do that to a fish), why everything about your cat life felt distracting, annoying at the least, and painful at its worst.
This has happened to me, and it has taken me a while now to think about writing about it all, to decide that it needs to be written about, and then to build up the courage to write it.
Even as I type, I am still resisting.
Though many people in my inner real life circle know what I am about to write, I still feel the possibility of the stigma... I have had one person, in real life, already say to me, "Oh...isn't that a fad?" or something along those lines. That is not someone I will be sharing with on an intimate basis ever again.
At the other end of things, when told about this, the people who know me really well simply nod, and say, "oh...right...yes..."
I have written at Girl on Fire and on blisschick fairly extensively and openly about my chronic depression and anxiety. For a while, there were even other lenses through which Marcy and I were viewing my "symptoms" and difficulties.
None of it ever truly fit.
None of it ever explained everything.
None of it ever helped me.
And it especially did not explain everything once I returned to dance and found this passionate work which allowed me to breathe and fully live.
Even with all of that and the depression lifting, I still suffered daily difficulties.
When I try to explain this in writing, please remember that there is no way to explain this in writing.
The intensity of my daily struggles are understood only by me and by Marcy who daily has to witness my frustration and pain.
Marcy, the most patient, loving human being on this planet who finally figured it all out.
She has watched me struggle, and then she would hit the books, trying to design methods and organizational tools and schedules and anything she could think of to help me navigate through my days, suffocating under weights that other people would see as "light" or at least very tolerable, do-able.
We spent countless hours upon hours talking about what it felt like in my brain, what the struggles actually made me feel, what would precede them, and on and on.
And one day, it hit her that I perceive TIME differently than other people, and she found a woman writing about her child perceiving time differently and she read it to me, and I almost burst into tears...yes, that was IT!
She looked at me confused and I looked at her confused, both of us flabbergasted that we could know each other for almost twenty years and never know that we thought about something so fundamental to the human experience in completely, bizarrely different ways.
As it turns out, Marcy (if you couldn't guess) thinks about, experiences time like the general population.
I do not.
Looking back on all the ways she had devised in the past to try to help me, she realized all her methods had come from special education. (Marcy is certified in education and likes to tease that she took classes in me in college in preparation for meeting me one day...)
When all of this came together and we started reading and I took all the diagnostic tests and we kept reading and reading and reading, the relief I felt cannot be over exaggerated.
This changed my life.
This GAVE me a life.
Everything in my life suddenly made sense, and yes, I had moments of grief about this because my brain will never process things in the way that the world around me assumes that brains process and this creates a vast array of difficulties, but to understand WHY I can be so "smart" and yet have such a hard time is like I was that fish and you just threw me in the lake.
I am an adult Aspie (and I will continue to use that endearing nickname regardless of the DSM V, where ASD does not belong).
My brain is different from yours.
My brain is difficult.
But my brain is also beautiful in ways that you neurotypicals cannot imagine.
Just like I cannot imagine your difficulties and beauties.
Because the site, Girl on Fire, is for me to explore and write about my love of dance as a spiritual path, and because I think it's super important for more women in particular to be writing about ASD (Autism Spectrum Disorder), I am starting this new site, Monkey Brains. (This post is being repeated at both sites today.)
You can read my Monkey Brains About Me page for more information. Girls/women on the spectrum look totally different than boys/men, and because of this are not getting diagnosed and helped. I am a passionate supporter of neurodiversity and so you will never ever find me writing about what causes ASD or how to "cure" it. This is who I am.
Love it or leave it.
Or watch out...Monkey's throw their shit when excessively offended and Marcy did not arbitrarily nickname me Monkey many years ago.