Small successes

1) I made a to-do list.
2) I've already done at least two items on it and it's before noon.
3) I snagged a late lunch with D and Vivacious P for later on today. Double-yays!

Since I've finally got around to ordering it, I want my new white cane NOW. Instant gratification! No patience! I wonder if it will be heavier, lighter, or the same. I wonder if the white will be just brilliantly white, as it is in the picture. I wonder what the handle will be like, and whether it will resist or accept my decoupaging efforts. The sooner I get it, the sooner I can pretty it up, the sooner I can use it. In my head I've already prettied it and the glue is drying. In my head the glue has dried and I'm taking it for a walk. The sun is wicked bright, and the cane is like, glowingly white.

The sun is not actually that bright outside right now.

But I'm excited anyway. Six inches will really make a difference.

Sorry, my inner 13-year-old thought that was really funny.

I finally got the words out....

... of my mouth before the action occurred. What I mean is, I was finally able to say "don't touch me" before the hands touched my body.

People are bad at giving verbal directions. When they want to communicate something, the left right forward back goes away and is replaced with the more general here there that way this way, or worse, the grabby hand. The grabby hand is most likely, at least on a conscious level, out of benevolence. However, I have the choice, and the right, to determine whether or not I'm okay with people touching me. So I said "please don't touch me" to a man who was trying to guide me to a bus seat. He said sorry. It is possible he was mildly offended. I murmured mild things in return. But a) I said please and b) my not wanting you to touch me is not an assessment of your personal self-worth or my opinion of you as a person. Then the old lady tried to guide me to the seat (which was next to her) with the grabby hand and I was like "don't!" She had just seen me say what I said to the man. Maybe she thought my touch-resistance happened because he was a man. World of strangers: I would like you to know, you have an equal opportunity to be gently chastised by me for trying to use your grabby hands instead of your words. Unless I am on the ground and can't get up, or bleeding profusely, etc. In which case probably no one would stop because who wants to be involved with that?

I would also like to say, I was kind and positive to a different man with intrusive questions because he respected my boundaries and withdrew his grabby hand without my having to tell him to do so. Which is why I didn't mind answering his question about how did I know when the light turned green. Blogland, if you want to know: a) I'm not completely blind and b) I pay attention to the sound the traffic makes. He said to me then, "but people go through red lights." And I was like, "yes, yes they do." He gave a slight horrified grimace, perhaps picturing me as road-splatter. I had nothing in reply to that. It's important to practice defensive pedestrian (just like defensive driving) skills. I.e. wait for all the assholes who are gonna go through the lights go through them.

All of this nonsense and hoo-ha happened in about, I would estimate, 30-40 minutes of commuting time. So if you ever wonder why I'm so sensitive, it's because this is my day. What I deal with now.

I can say today, it is better than "fake seeing." That's what I call the vision that I have, and how I use(d) it, in a crowd, with no assistive devices. I was at a really bad place last week. I don't know if I would have said so then.

And lastly, because I know you like to know everything --or rather because I am committed (one might say compelled) to putting them out there: I fell again today. I think I need a longer cane. I'm just a fast walker and I need more advanced notice on what's coming up. Also, I need a longer reach to navigate things like curbs.

In case you were curious where a person orders a new white cane, you can go to the NFB market and click (on the left sidebar) "canes and travel products."

I have never procured my own cane before. Both of my canes were given to me, already lightly used. These days the canes are different --better looking with carbon fiber instead of aluminum. Many have these neato "metal glide" tips (it looks like a tiny flying saucer) instead of the hard plastic "pencil tip" like I had or perish the thought, the completely gauche "marshmallow" or "ball" tips. Yes, I am cane vain. AND this new cane should not have that ugly-ass golf club looking handle that the previous type of cane had. Which means I can choose whether or not I decoupage the handle because it might not need to be prettified.

If K were here she'd say EVERYTHING needs to be prettified. She's probably right.

Lists

major parts of the eye

aqueous

     humor

vitreous

     humor

cornea

conjuctiva

choroid

lens

ciliary     muscle

orbital     muscle

pupil

iris

Canals of Schlemm

ciliary body

optic nerve

macula

fovea

retina

sclera

lens sac

zonules

optic

   chiasm

     optic

          disk

Zed.

I'm on a dangerous edge. I approach the event horizon. Light flows through the v's of my splayed fingers. Light trickles up my arm. I am between. This is the most sincere thing I can say to you.

XXXXXXXXXX

The X's stand for feelings and things that happened today, about which I can't write. There were some embarrassments today. Concerning some DPW barricades, and a rush hour bus ride. Two separate incidents. Apparently, in some situations, I don't have enough signifiers that I am blind, or I have too many non-blind signifiers or... what?

I wish there was somewhere / to someone I could go with all of this emotion riding my brain like a disease which I have just beaten back, but which is colonizing my pathways again.

I have a therapist who I've been going to for {does math} .....  {tries math again} .... um, a long time. Over ten years. She's really (so far) got nothing on this one. I think I have come to her with something she's never seen before. She is so smart. I respect her. I listen to what she has to say. Today, she made. A joke. About my anger. About / through this adjustment. I think she was trying to lighten the mood or something. It was. Really ill-timed.

**********

....Annnnnd we interrupt this blog post because a little girl (one of the hordes of children that play on our stretch of sidewalk was on her bike and just hit by a car. In front of our house. She looked to be about eight (?). I went outside right away but the neighbors who are on their porch 24/7, were already on it. Kind of puts my day in perspective though. Externally she looked okay-ish. They did put her on a back board though. Thank god people knew not to move her.

Our street winds through the slopes up and up, where houses are sort of terraced into the hill in a style of which I can only call Pittsburghian. Here's a shot from the cemetery across from our house.

People should not be driving up streets this steep as fast as they do. It's I think a 25 mph zone but there are no speed signs and not many stop signs. Plus, bad stereotype, every fifth person who drives through here is probably over the legal limit.

People should also probably not be letting their kids play on the narrow strip of sidewalk next to the street, but the backyards are really hilly and hard to play in, I imagine. I have to go now.

Sidewalk Q&A

I am lurking at the coffee shop across the street from the coffee shop where the interview is to take place.

With the mini heat wave again, our sidewalk is full of children who have no yards and need to run up and down and scream and whatnot. Past my house repeatedly while I am working. But anyway, not the point. I put on my first day of school dress. Literally, this is the dress I wore the first day of teaching this past year; it feels like more time has elapsed since then. I noticed the dress is rather loose in places where it fit better before. In fact, if I had not grabbed this dress from the closet at the last minute, I would pick a different one out of the attic summer stash. The bodice, um, gapes. I brought a cardigan but I'm not wearing it until the last minute cos it is so damn hot.

Anyway, children running up and down my side of the street, so I decide to walk to the bus stop on the other side of the street rather than walk through them. About one block up, there is yet another queue of children, milling and writhing. Suddenly (because everything in my vision happens suddenly) a big ol' yinzer walks in front of me and asks, "Are you blind?"

"Yep; mostly." This has become my pat answer to anyone who asks this question. I have a white cane. What more do you need to know?

"Well, I thought you should know you are about to walk into a crowd of --"

"I know." I thought he was gonna say children. Because there were children moving in brownian motion throughout and beyond my entire frame of reference.

"--bees."

"BEES?!" That came out rather shrill.

"Yeah, a whole crowd of 'em. They're about to tape off the road and everything. Some little old lady just got attacked --"

"OMG, thank you so much. Bees? Really? BEES?"

"Do you need help crossing?"

"No I'm good crossing. You said a crowd of BEES?"

"Yep, bees. I can help you cross to the other side if you want."

"Nope, I'm good. OMG. Bees. I have this totally paralyzing bee phobia. I mean it's really bad. I'm on my way to this job interview and--"

"Okay, you're all clear to cross now." He walks across with me but does not touch me. "Oh, I like your artwork." He means my tattoos. I'm wearing this summer dress that is feeling very very gappy indeed.

"Thank you. And thanks for telling me about the bees. That would have sucked."

I saw the old lady a few blocks down the road, shaking it off in the driveway of an auto body shop. Her posture looked defeated. But she had an old lady cardigan and long polyester pants on. I have so much lovely flesh showing for those little bastards to sting me until I'm unconscious.

I have always been mistrustful of the kindness of strangers. But thank you, large man in Steelers t-shirt with sleeves ripped off.

Damn this latte is good. I hate to throw it away now. Sigh. If it wasn't for coffee shops I would have no place to bees.

On the potential assets of vulnerability

I know this blog post gets a bit long. First I summarize the salient points of her talk, and then I talk about why they are important to me.

Brené Brown TED talk

Brené Brown is a social worker / anthropologist / ethnographer who studies the connections between people, why and how they happen. She specializes in studying shame and vulnerability. I didn't think anyone had ever studied that, but I was interested to listen. In this talk she sort of explains how she came to study these topics and the most important information she has gleaned on them, from doing thousands of interviews with people. I invite you to go listen to the talk before or after reading this blog entry, or bookmark it if you don't have the time. The quotes here are just-about-right-but-maybe-not-exactly. I was typing pretty fast because transcribing from her talk.

So she started off her doctoral work interviewing people about their human connections.

"When I asked people about connection, the stories they told me were about disconnection." 

These interviews gave her the opposite data than she expected. "I found something that totally unraveled the idea of connection for me, and that was shame. Shame is the fear of disconnection. The idea that underpinned shame was excruciating vulnerability. In order for connection to happen, we have to allow ourselves to be seen, really seen."

So in her research, she set out to "deconstruct" shame and the idea of vulnerability. 

"If I roughly took the people I interviewed.. and divided them into people who .. have a sense of worthiness ... a strong sense of love and belonging ... and folks who always wonder if they are good enough... there was only one variable that separated [those people]  people who have a strong sense of love and belonging ... believe they are worthy of love and belonging."

She examined all the interviews of the people who were living with a strong sense that they are worthy and wanted to figure out how they did that. She described these people as "wholehearted." The three characteristics of wholehearted people she enumerated as "Courage, compassion, connection. The original definition of courage being, not a synonym for bravery, but to tell the story of who you are with your whole heart. The courage to be imperfect. The compassion to be kind to themselves first, and then to others... They had connection as a result of authenticity." The fourth thing they had in common was that they "fully embraced vulnerability. What made them vulnerable made them beautiful." 

OKAY HERE'S WHERE I COME IN:

This talk really hits home for me, especially right about now. I still have to force myself to go outside using my white cane. Yesterday the light was such that I could almost convince myself I didn't really need the cane. It wasn't searingly bright; it wasn't dark; it wasn't raining. I could have just gone out without it. Never mind the street crossings, people on bicycles, endless and different-every day construction that forces me to walk in the street and off the sidewalk on our hill, which cars just fly up and down at a high rate of speed. I thought, "I am not going to make it outside today if I have to use this f*ing cane."

But I told myself, I PLEDGED to myself that if I was going to start using it, I would use it full time, as I had originally been using it in Columbus. Why did I do that? Well for starters, probably because I knew it would be too easy to "take back" my vow if I didn't put that clause in it. I'm very good at rationalizing what I don't want to deal with. Secondly, it would allow consistency in my own brain and the brains of others. The idea here is to not only incorporate the cane for practical reasons but integrate it into my overall identity. If I'm able to say, "oh, but not today," then my progress, as a person, would stay where it's been for the last x-number of years. I would not be accepting a fundamental part of myself. 

And that's where the shame comes in. I have a *lot* of shame about my body. The disability stuff is only the half of it. And using the cane is basically taking that festering shame sore, or whatever, and rubbing gravel into it. Like HERE I AM WORLD, SHOWING OFF MY SHAME.

Not that I intellectually think I should be ashamed of having a disability. The opposite actually. All my parts, even the broken ones, are a part of me. I would not be me without them. I'd be some other girl.

It's just that I got so many messages as a child that I should be ashamed. I don't think the people sending the messages meant to indicate that I should have shame, but that was the lesson that got communicated. 

Here's an example: You are just like everyone else and you can do everything that a normal kid does.

The goal of this person / people was probably to encourage independence in me, to foster self-esteem. The thing is, I wasn't just like everyone else. I couldn't do everything that a normal kid did. But I tried. And failed. And felt shitty about it. And failed again. And again. And again. And the other kids made fun of me and let me know just how absolutely I was failing. So there were two subconscious lessons that my brain took in here. 1) You suck at being normal and 2) It is better to be normal than being what you know deep down you are.

There was a part in the talk where Brown speaks of how her research was affecting her personal life. She likes to control and quantify, so she was devastated at first when she found out that the issue of vulnerability was at the core of her research. And she said something like [paraphrasing here], "You know the kind of people who find out that they have an issue with vulnerability and they just decide to surrender and walk into it? Well, I'm not like that. Furthermore, I don't even hang out with people like that."

That's me. I've been told by some very good, smart people whose opinions I respect that the way to get through shame is to allow myself to be vulnerable and I'm like F*** THAT.

I know I've been going on about this blog and "radical openness" and all that. But it's a freaking slog to be radically open. I hate it. It does not come naturally. I am private. I am guarded. I am mistrustful. I have some anger management issues. And a big Sword of Damocles sized anxiety hovering over me if not at all, then at most times.

Today I have a job interview. It's for a job that I've been chasing for nearly a year now. It's with a good organization that I really believe in. I'm having paranoid thoughts though:

a) even though there has been no indication of this being a factor, they will somehow decide that, because of my visual impairment, I am unfit to do this job;
b) that I will have an attack of fibro fog in the middle of the interview and start losing words, getting flustered, losing more words. The cats kept me up all last night cos Mike wasn't home. So I didn't sleep well. I'm pounding the caffeine. I used to be GREAT in interviews. Charming. Charismatic. Genuine. Now today I worry I will show myself as genuinely unable to have a conversation.
c) That they will google me (I bet all bosses or potential bosses do this now), find this blog, and tell me to shut it down or I can't have the job. 

I am praying that these thoughts have no merit to them. Because part of me is like, "Yes Brené Brown! [and other people who tell me this stuff] You are amazing! Your work is amazing! You are right! I need to let myself be vulnerable and authentic and live whole heartedly, etc." 

But the world doesn't work like that. Overall, it doesn't. And she addresses this in the second half of her talk. She addresses it, but there's no solution except for everyone to decide that "genuine" is the way to live. At the top of Corporate Reasons to Not Be Genuine is profit. Second on that list is Covering Your Ass. So my mistrustful side and my trying-to-heal side are going at it. In my head. Especially today.

Please send me some good energy so I can deal with whatever happens.