I just finished a book called "Neurotribes" by Steve Silberman. While the book dealt with the issue of autism/aspergers, it got me thinking a lot about the concept of neurodiversity as it applies to other non-neurotypical brains.
Other conditions often put under the non-neurotypical umbrella include autism, bipolar, dyslexic, and schizophrenic brains. This concept is outlined in a post called "Neurodiversity: some basic terms and definitions" by Nick Walker.
Because non-neurotypical brains work differently. They think differently. Sometimes in a way that sucks, but sometimes in ways that don't. Which is not to say that all neurotypical brains work the same... just that there is a dominant way, a common way, for brains to operate along with an infinite number of variations across the board.
This made me think about the strength of thinking about bipolar as a disability rather than a disease. When thinking about disability as a condition that puts you in some way outside the norm. A condition that makes functioning in the world as it is somewhat more challenging without changes in the environment.
I don't feel that I belong in the Asperger's camp, but many of the adaptations suggested for autism-friendly events appealed to me greatly. Just as with many cases of "Universal Design," modifications that are beneficial to one specific group often prove beneficial to EVERYONE (thus the "universal).
One such idea was having a quiet space set aside at conferences so that people who were overwhelmed by noise and social interaction would have a place to retreat. Where people wouldn't think it was bizarre that you needed some personal space.
Another one was having color-coded badges attached to name-tags (that could be changed at will) indicating whether or not you were open to be approached.
Presumably if you didn't display a colored badge on your nametag, the standard rules of engagement applied.
See... I told you that having mandatory mix and mingle activities forcing people to engage in small talk were a terrible idea and tantamount to cruel and unusual punishment! (And not just for me, apparently.)
I really like the idea of putting the degree of social interaction expected of people to be put in their own hands. It seems very respectful. Not assuming that everyone does or does not wish to engage in social networking.
Okay. I don't really have anything else to say at the moment so I will stop posting.
Grateful Crap: anti-inflammatories (pulled my hamstring attempting to water-ski with limited success... well, I pulled the hamstring quite successfully. the water-skiing was more ambiguous.)
eating sort-of well. i'm on a slowcation for the week and have been engaging in sugar
going running (until pulled muscle)
sleeping A LOT. I was actually kind of sad about how much sleep I've been getting. I feel like I should be DOING more.
beading a little. I broke my only needle and haven't been able to get another one yet and I'm not even really panicked about this.
time with family
meds: 150mg lamotrigine
I do not, in fact, dislike people. Just when they are overwhelming in number. Unfortunately the number that overwhelms is a moving target.
People are vastly interesting. Interacting with them gives rise to all manner of interesting stories. I have powerful friendships and really do enjoy spending time with people I like. Some times. In some quantities. For some length of time.
I do not like being alone unless it is specifically my idea.
I think it is the control freak in me that balks at many larger-scale social situations. People just provide too much chaos in each individual. Known groups have a known behavior. I have done things with these four people before... I know how they will act and behave toward one another and toward me. There is a common set of behavioral norms.
There is more to this thought, but I can't quite tease it out at the moment.
And the mom thing gets in the mix too. I not only worry about my own interactions with the world, but my children's connections as well. When I become overly concerned with how my children interact with people I start getting a bit frazzled.
I don't want to try to "fix" my children. I don't want them to feel like there is something wrong with them if they don't want to go to parties or do things in large groups of people.
But I also don't want other people to think that they need to be fixed... so I want them to be able to "pass" for not-anxious non-introverts? Or know what that looks like?
There is a great deal of deceit wrapped in social niceties.
We say we are sorry when we are not. Sorry implies guilt. We do not feel guilty. And maybe we don't feel bad.
We allow someone's asinine assertions go unchallenged. Otherwise we will never shut up. Ever.
We don't demand fairness when slighted. Not in the lesser things. And then not in the greater things either.
We engage in behaviors we would rather not.
And we don't act on the impulses of our true self.
And then people are so impressed with what fine upstanding people we are.
Because the social repercussions of not engaging in these little deceptions is unthinkable and exhausting.
I have recently wondered if my social avoidance is more related to the anxiety part of my bipolar than the introverted part of my temperament. And if it matters. I guess it kind of does. In that symptoms of anxiety can be ameliorated. And symptoms of personality can't.
I will try to improve my posting hygiene... make it part of my "regular routine." Of course right now I don't really have a regular routine, so that is part of the problem I guess.
Summer has been like this for me:
The Part of The Post About Beading:
The pre-show beading was largely sensical and preparatory. The post-show beading was largely anxious and neurotic.
I took an order for a cuff. And I wanted to make sure that I got it done promptly and she didn't worry about it. So I pretty much just beaded non-stop until I finished said item. Which is stoopid.
The show went well. I sold six cuffs, made enough money to cover the cost of my booth and enjoyed myself moderately. Here are my feelings about showing my stuff at a two-day-long art festival outdoors.
The Non-Beading Portion of the Post
I feel disappointed with my ability to DO SOMETHING and involve my children in the wider world. Or even just the outside world. Or even the world beyond the living room. Or the couch.
Mostly when I was home and when I wasn't home, everyone just sat around playing video games, watching movies and whining.
Occasional explosions of air-dry clay. Some forays into sidewalk chalk. It is likely that I am overexaggerating.
I am simultaneously mourning the disappearance of unscheduled summer days and realizing that I am poorly equipped to handle these unscheduled summer days.
Spouse went out of town and nothing interesting happened. So there is that. No rennovating the kitchen. No digging up the garden. No creating a patio in the back yard. No replacing all the doorknobs.
I am no longer taking the anti-psychotic, but only because I didn't touch base with my Psych NP before it ran out and then I figured I'd see what things were like without it. I don't think I have noticed much of a difference. Except that I am not wickedly tired... although I fixed that by taking it at night instead of in the morning. Whatever.
This way I can see if I gradually slide into mild-moderate Depression while on lamotrigine alone.
I have also decreased the amount of lamotrigine that I am taking. Now 150mg per day. And I would rather not tell you that these medication changes have been my idea and I have not gone over them with Psych NP.
I am 100% certain that she would approve of them, but it is really my plan to have her approval prior to making medication changes.
I have just been so frazzled by how difficult it is to get in touch with her. I have an appointment scheduled in the second week of August and I will come clean about all of this AND get her contact information. Which I used to have but my phone destroyed it.
I went to a giant party with people that I don't know and I didn't have any lasting ill effects. Nor was I overly anxious during the event. However, I was also not at all involved in planning or anticipation of the event and in general... forgot to even bring the birthday present. Which makes it seem like my coping mechanism for large party even was big-time avoidance.
I noticed I was having a hard time making eye-contact with people I hadn't met before. I wonder if I always have this problem? I didn't want to encourage conversation or small-talk. Eye contact is the gateway drug.
I must say that I do enjoy not feeling anxious at the moment. Even if I deliberately think of the things that I could be worried about, it doesn't get to me. I'm sitting watching the sunset. And writing. And not feeling terrible that I screwed up the present or that I haven't contacted my commission customers.
Of course I am a bit worried about the fact that I am not feeling anxious.
When I was first diagnosed with bipolar, the psychiatrist said that i was probably used to being just a little bit hypomanic most of the time. I think I am also used to being just a little bit anxious all of the time. I think they go together.
I'll keep an eye on this to make sure it isn't the start of anhedonia.
P.S. I went water-skiing for the first time in over 2 decades. It was amusing. I mostly went out of solidarity with elder son who is learning to ski. Thought I'd join him in the venture. Likely to be sore tomorrow. Wore my Wonder Woman swimsuit. I rock.
Grateful Crap: sunscreen
time with family
coped with strangers decently
did new/old stuff (skiing)
meds: 150mg lamotrigine
I have been on atypical antispsychotics for one month. I don't know what makes them atypical. What is a typical antipsychotic? Can I tell you how disturbing it is to me that pharmaceuticals do stuff and we don't know how or why?
Anyway, I haven't done a great job posting in the last month or so, and I don't really know if I'm better off Depression-wise than I was. I have done the following things while on this medication:
So I think this is some indication that I am not rock bottom. And I don't feel Depressed. I just don't exactly remember how I felt before and what caused the decision to try the lurasidone.
In fact it seems very likely that I am doing better.
I think I was kind of right to not want to start them at the beginning of the summer though, when I had a schedule change and a change of teaching thing and change of routine and in general a lot of change. Which meant Too Many Variables.
How am I supposed to be a good N=1 study with so many factors in flux?
I called Psych NP but have not yet connected with her about whether or not to continue on the lurasidone.
What would it be like to just be OFF OF EVERYTHING. Why? Because in the perfect world I wouldn't need to rely on pharmaceuticals to keep my brain chemistry functional. But in a perfect world I would not have bipolar disorder. I'm just saying.
Okay, let's not get all carried away here. I think that to be off of everything I would need to see Psych NP and the OFP on a much more regular basis to monitor my... me. And I would have to be even more regimented than I am now about my healthy diet, exercise and regular sleep.
I have been, by the way, sticking with my healthy patterns. Except when I was at the Quaker Gathering when I had ice cream everyday and didn't run at all. But I walked a TON. (Because a ton is a unit of length. Ha.)
Yesterday and today I have felt lethargic and like I am turning backwards somersaults inside my head. This is not a pleasant feeling.
I have a GIANT art fair/show thing this weekend and I am kinda freaking out about it. But only kinda. Not full-blown hypomanic or anything.
Grateful Crap: my nice old digital SLR camera
300 mg lamotrigine
20 mg lurasidone
gods i sound boring
it would be best in many ways to live my life apart from the world.
to be cloistered away somewhere set aside from this hectic reality where i could only focus on the things
directly in my presence and not worry about anything but the life within my reach, thinking only of the activities that spanned the breadth of a single day.
i keep thinking that i should be doing a thousand thousand things that will never happen.
i should be more well informed.
i should have a better handle on politics
(on the local and national and international stage)
i should be involved.
i should learn what it means to "caucus."
i should have an opinion on issues that have numbers.
i should know that there are ballot initiatives.
i shouldn't need a bumper sticker to remind me when to vote no and when to vote yes.
i should take an interest... i should educate myself.
but then things happen.
they always happen: violence and war and death and bigotry and hatred... large, intractable, human problems fueled by such deep divisions that nothing can bridge the widening chasm and no amount of my caucusing (nor lack thereof) will change the inevitable tragic outcomes.
why should i feel a call to action if the call itself causes me to become paralyzed?
why should i be well informed if the information makes me sick?
can i be a conscientious objector on matters of conscience?
what if my world is just small?
what if can't operate in the world beyond my front door?
what if i raise my children to be intelligent, caring human beings?
what if i fight HARD for my students... newly arrived to this country that is safe(r) than the one they left?
what if I serve as an advocate for them, as a jumping-off point, as a compass when they try to find their way?
what if that is my activism?
is it enough?
because when i sit with people here at lunch i am expected to know the latest (and the last twenty years' history) of any particular cause or risk being an outcast. not a true outcast in any formal sort of way--
but ignorance casts me in rags where others are crowned in glory.
i think of myself as a "big picture" person, but i can't do big pictures of political and activist things. my big pictures can only encompass a school. perhaps a district. this doesn't seem like the big picture does it? seems small. puny. minuscule.
or maybe because of my "big picture" way of looking at things my thinking gets too muzzy if there are too many players involved. i can imagine too many points of view. too many factors involved. too many possible bad outcomes.
i am trying hard not to cry all the time.
how do i know when to stop protecting myself?
how do i welcome my children to this world and make them less ignorant of current events than i am...
if ignorance is part of what keeps me sane?
how can i fight when surrender is my opening salvo?
and tears are the only counteroffensive?
The gathering of Quakers from Friends General Conference (one of the liberal branches of the Quaker family tree) is being held in central Minnesota.
The site of the gathering what criticized in opening remarks as being a location not safe for people of color. I don't really understand what that means.
Because small towns in rural Minnesota are all pretty safe for me.
I am a white girl with no obvious prejudicing conditions. I don't need to announce my rabid liberalism. I don't shout from the treetops (except on my 100% public blog) that I am living with a mental illness. I don't even have a bumper sticker to clue people in to my values.
And while we are gathered here, in a place that I perceive as being mildly and passively unwelcoming to people of color... there has been Yet Another Police Shooting in which a black man is fatally shot in what should have been a non-confrontational situation.
I NEVER have to worry that when I am pulled over in a routine traffic stop that I will be shot. My biggest worry is that I might have to pay a fine. Or maybe appear in court to challenge a fine.
To make matters worse, the man who was killed worked as a cafeteria supervisor at an elementary school. A school frequented by several of the children in our home meeting.
I am pissed off. Not sure what to do about it. I'm just some white girl. I don't get it. I can't get it. I get that. And I am at a loss as to what to do. Just not nothing. And not something symbolic but largely empty. Not interested in doing something just to feel good about myself. Also not interested in sitting around being ashamed that I am a white girl.
Forget to turn your phone off when going to have a much-needed relaxing massage.
Get one email message (DING)
Two text messages (Bzzz... Bzzz... ... ... ... Bzzz... Bzzz...)
Then get a phone call (Bzzz Bzzz Bzzz Bzzz Bzzz Bzzz Bzzz Bzzz)
Spend the rest of the time during final relaxation being worried that
And feel really guilty that you didn't have the presence of mind to silence your phone entirely before going in for said massage.
Let your children stay up ridiculously late. Because it is easier than trying to get them to bed at a reasonable hour while in an unfamiliar setting.
(Make a really cool sleep mask for your daughter out of black socks and blue painters' tape)
Let them fall asleep in their clothing. Or perhaps just don't notice that when they wake up they put on the same clothing they had on the day before.
The following morning...
Get in a knock-down drag-out fight (cage match, last one standing) with one child about the necessity of changing clothing.
Insisting that YES, the caked-on mud does necessitate a change of pants EVEN IF they are "nano pants" and he sort of splashed some water in their general direction.
Now there is only 1/4 inch of mud caked on them instead of 1/2 inch. This argument consumes much of the spare time built into the morning's schedule.
Have breakfast in a leisurely fashion (not taking into account the time burned by the pants debacle), then fail to notice the time and realize that you have only two minutes to be in three places at once. Crap.
Must drop off two children (early) before getting to your job (late).
Drop off one child for his class to be greeted by someone who says, "Oh, I see you are wearing the same shirt you had on yesterday."
But then this person goes on to say, "I don't understand... why you didn't have time to change? Are you camping? No? But then why... You SLEPT in those clothes? How did that happen?"
Feel that this is one of your finest parenting moments. Decide that you need to be ten minutes late to your work-grant job instead of five minutes late so that your child can changes his F***ing shirt, since by now he is feeling VERY self-conscious.
Then, race of to drop daughter at her class, realizing that you have neglected to supply her with the following things:
Then realize that you have neglected to apply or supply sunscreen to all THREE of your ridiculously fair-skinned children. Who are likely to come down with second-degree burns from sun exposure now.
And tomorrow you will no doubt be greeted with, "I don't understand... what do you mean you didn't have time to apply sunscreen. Is there something wrong with your bottle of sunscreen that you couldn't figure out how to open it? Did you not realize what time class started? And by the way,
isn't that the same shirt you were wearing yesterday?"
Here is the pint-sized punchline to the shirt issue (which hit me much harder than it should have)... the person who made the comment is required to wear the same shirt every day while she works with the class. Ha.
Three days before I was planning to leave town, I discovered that my prescription for lamotrigine was out... okay it wasn't precisely out. I had 1/2 a pill left. So I called to refill, but it turned out that there were NO REFILLS without contacting my doctor's office.
The automated reply told me that they would happily fill my prescription four days after I had left. A week out.
So I called and talked to a real person who suggested I get an emergency three-day supply and call the doctor (actually Psych NP) directly.
Then I forgot to do that during the day and ended up talking to answering service... that told me they could not get any messages to Psych NP until AFTER the long holiday (U.S.Independence Day).
So I panicked.
Then I called the nurse care line for my regular health care and poured out my whole sob story. She tried telling my about the 3 day emergency supply... which is intended when you need to wait for 3 business days for all the paperwork to catch up.
It is not for when you screw up on a holiday weekend and then skip town for a while.
With your three children. (Okay, so not technically alone.)
Here is what this felt like:
I'm pretty sure that my skin is burning me from the inside out.
I can hear my heart beating in the tips of my hair. The hair itself is on fire and I can feel it crawling on my head. Is this what it feels like when mania starts and I wonder what will happen if they can't get my medication.
I will suddenly become worse. Worse than this. My hair will crawl off my head. My skin will catch fire. Everyone who sees me will know instantly that SOMETHING IS WRONG.
And that will suck because usually I have an invisibility around me. A certain lack of opacity. I can pass. Pass for eccentric and just a bit off. Sometimes even pass as just quiet and aloof. Or overly loud and interrupty.
If I can't get my medication-- and I don't even know if it is really therapeutic because it is the one that made Psych NP think that I needed to take something else. The other one. The antipsychotic one. What if this is a precursor to a psychotic episode.
What if neither of the medications works?
What if they all stop working?
What if they never worked?
What if I write this and I look at it later and forget that things got better and I don't remember that the problem was resolved and I got the medication and I managed to calm down.
I hadn't taken the medication for 1.5 days. Or more. Something like that. Was this feeling an indication of what I would be like unmedicated? Or was this an indication that I was having ANXIETY. Big anxiety. The kind that blots out reality.
My heart beat so loud it woke me up. It beat so loud it knocked Spouse out of bed.
Beat so loud it woke the children from their lair in the basement.
Caused the neighbors to report the noise to the cops.
Beat so loud that the ground shook and the tectonic plates shifted so that a fissure formed even though we are NOWHERE NEAR the edge of a plate in this most geologically boring area of the planet.
My heart beat so loud it drowned out the sound of my thoughts and I was just stuck with the beating.
And all this while I was supposed to be getting ready to go out of town. Supposed to be packing and preparing and making lists. But all I could do was panic in this beating heart sort of way. And beat myself up because this entire problem was of my own making.
WHY DID MY PHONE DELETE PSYCH NP's CELL NUMBER? (For this certainly would have been a fine time to call her.
When talking to anyone about this issue I was careful to appear calm. To sound as if I had everything under contol. But underneath it all was the skin-burning, hair-crawling, heart pounding terror.
I simultaneously assumed that everything would turn out some how.
This was quite stressful to write. I have not had internet access until now, which has made it difficult to write. I will try to catch things up, but not all in one post.
DO NOT WORRY. ALL IS WELL.
Quaker, teacher, parent,