Thursday, May 31, 2012

Everyone who continues to read this solipsistic crap should get free chocolate or something.

Dear woman on the bus,

I know that you were attempting to be kind by ushering this blind girl, whom you assume can't see anything, to a seat on a crowded bus. I also observed by the look you gave your friend, that you may have taken offense when I said, rather tersely, "Thank you; don't touch; all right," and moved to a seat further from where you are. Let me take a moment to explain from my point of view.

1) Since I have a very narrow field of vision, your sudden touch on my arm surprised the holy hell out of me. So did the fact that you seemed to be insistent, not letting go immediately. It felt more like a pulling touch than a guiding touch, if you know what I mean. This makes me tense and cranky.

2) I also think it's not nice to touch people without asking, unless you are trying to prevent them from falling into a precipice or retrieving them from a burning building, or other similar dire scenarios.

3) My balance is pretty unstable. When you grab my forearm and tug on it, just a little bit, it throws me off balance.

4) Your grabbing of my arm delayed me getting to the seat I wanted. I know you wanted me to sit sideways in the very front of the bus, because that is where I'm pretty sure you've seen most blind people sit. Sitting sideways on the bus sometimes makes me seasick. Sitting sideways on the bus ALWAYS minimizes my ability to use what remaining vision I have. I noticed that there was a front-facing seat, and I wanted to get to it. You were preventing me from doing this by grabbing my arm.

4) I felt guilty all the way to my stop, as the bus chugged slow slow slowly up the south side slopes. I was sincerely hoping you'd get off before me, but no. I tried to make amends by saying "have a good one," and doing that half-smile thing I've been working on, but you may not have noticed it. I'm pretty soft spoken around people I don't know.

5) Maybe it will cheer you up, as it did me, that as I was unlocking my front door, I heard the neighbor kid call his sibling a "giant butt cheek." I snort-laughed loudly, like HA, and stuck my head all the way into the mailbox to cover up my laughter. I'm giggling now as I remember it. Perhaps you don't approve of that kind of language, but I'm offering it as a giftlet of humor, which we probably all need more of. I know I do.

Wednesday, May 30, 2012

I found my bag of eyes.

Good thing I had labeled it eyes really big.

I found my bag of eyes and a shiny page of crystals.

Haven't been blogging in a few days because my brain is in a really bad place like almost-relapse bad and I don't want to share it with the whole internet in specific. But I am staying strong.

There's a long long list a-building. One of these days. I'm going to tell them how I feel. Use my words! Ha.

She yells at her child and then asks him why he is crying. Does it remind you of anyone?

No man is an island but is, perhaps, a woman an island?

A woman-made island. A woman, made island?

But in the meantime. If I can't make a bridge. I found my bag of eyes.

Saturday, May 26, 2012

I can't stand it, I know you planned it --I'm tellin y'all it's a sabotage

On Wednesday and Thursday I woke up happy. Not bubbling-over-with-joy happy, but ... I will try to describe it. Not so skincrawlingly anxious was the biggest change. Not feeling all-over-angry. I smiled. I laughed. I giggled. I talked more and faster. I spoke up. I smiled at people even when they were being a little nerve-wracking or the situation was tense. And it wasn't a fake smile. It was like, oh well, things are weird, but it'll pass. And the cane. It didn't matter. Not as much. It was just a serene sort of... whatever. In a relative sense, it was BLISSFUL. I felt like a weight had been lifted. And I don't know what caused it or how to get it back. 

I know that when I have a large positive change like this, I tend to exploit it. For example, in January of 2011 I switched my meds and had a lot less fibro pain, I said yes to every opportunity that came my way. Workshops, classes, readings, meetings, projects. I did everything because I was feeling so damn good. I steadily burned into July. At the beginning of August I was completely exhausted and then had a bit of a "trough," shall we say. A valley of exhaustion. That lasted from August 2011 thru January 2012 when I got PT for my back injury in November '11. 

So yesterday, when I realized I was getting a BONUS DAY of feeling good, I made a list of events. I had three events planned. Usually with the fibro, two is a good plan. But I had three. I knew I was pushing it but hey, once in awhile is okay, right? So I did a bunch of errands that required a lot of exertion (event one), visited with Jenn (event two) and had drinks with Katherine (event three). This all involved a lot of walking, busing, standing waiting for buses. It was really hot out. I felt happily exhausted, kind of gross with sunscreen. 

In the meantime, I found out that surprise! there would be a fourth event. Dinner with in-laws. I thought we weren't going to see them until Saturday morning, but I didn't get the memo about the Friday night dinner. Mike apologized for not telling me about it. I forgave him but was still pissed off. Intellectually I know he has been under enormous deadline pressure, and that a miscommunication was inevitable. But emotionally I was pissed. I think he quasi-offered for me to skip the dinner. But here's the thing: Mike plays the dutiful son. Mike IS the dutiful son. In many ways, not just this one, he is, morally, a better person than I am. So I feel extremely guilty when I don't play the equally dutiful daughter-in-law. But I'm not wired that way, to be close to my family. My family visits about once a year. Sometimes less. It's not enough. We see his family like ants in my pocket, every three months. They both work full-time. It's a five-hour drive. And still they come. It's more than I'm used to. But, weirdly, I have sort of started to LIKE having family around. Again though, not wired that way. When I see his family so often, I miss my own. It's hard to explain. I want MINE, not his. It's like... cognitive dissonance. 

So, exhausted I came home and took a shower to get all the sunscreen off. The shower was Edenic. And I knew it was the first day of Real Summer. After showering, my back started to spaz a little. I was like oh, fuck. No. We have one more damn thing to get through. C'mon back. I know you're tired. We can do this. So I flopped on the bed. "I have to rest my back for five minutes." I needed an hour. I got ten minutes. The door knocked. I was like, "Shit fuck hell." Mike was like, "oh for godsakes." I guess he thought I was overreacting. Fair enough. 

I should mention that during the errands event in the morning, i bought pretty sandals. Most of my shoes sort of tow the line between pretty and utilitarian. I have balance problems, so I can't really wear heels and I need the shoes to be stable because I don't drive, so, walk a lot. But yesterday. I bought in addition to cute-yet-functional black sandals to replace my falling-apart pair... *~two pair~* of cute sandals. Not practical. Not for a lot of walking. Ornamental. One pair of red flats and one pair of silver sparkly sandals with the tiniest of heels. Vegas baby! We leave next week. Finally we get our vacation. 

I figured going out to dinner was a great way to break in a pair of sandals. Minimal walking. We were going in the C A R rrrrr. So I chose the red flats. They were the easier than the ones with the heels and I was tired; I knew that. 

Aside: I usually practice walking in my shoes, whichever shoes they are, because of my balance. My feet have to get acquainted. My equilibrium has to stabilize. My muscles have to learn. Just for a few minutes. But we were leaving NOW and so I put the sandals on (glancing in disgust at my chipped, grown-out pedi) and went downstairs.

And as we were exiting the porch... it has two whole steps. And I tripped down them. And I hung onto the newel post to avoid falling. The result was a sort of total-body whiplash, with OF COURSE my lower back having a total spaz and my right elbow getting the rest of it. Fuck. I took a whopping dose of muscle relaxers and fell asleep on an ice pack. It sort of helped I guess. I am SO MAD NOW. I hurt all over this morning. 

Both A and N have spoken to me about back spasms in particular and fibro in general that happen because "it's my body's way of expressing my needs when I refuse to do so in the normal (speaking: hey, I need this) fashion." They both feel that the more emotion I can get out of my head and into the world, the less my pain will be. Not that it will go away, but that I am holding onto it, in some sense creating it, as a result of the constant anxiety and repression of anger. 

I have to give this idea some cred. N is a psychiatrist. A is an "energy worker." Both ends of the mental health spectrum and they say the same thing. I've also read scientific articles about fibro and the parasympathetic nervous system. How your fight-or-flight response gets stuck in the on position and you can't relax because the "danger" never goes away. And it makes these "overactive nerves" that they talk about in the commercials for Lyrica.

Which leads me to want to be like *head desk**head desk**head desk**head desk* until I black out. Because wtf?! I'm doing this to myself? I can't help it, but somehow, I can? I get it. I understand. But I resist. The story of my existence. Intellectually I get it. Emotionally, I'm like *head desk*. 


Mike asked me awhile ago when his parents were planning on coming up for Memorial Day weekend, did I mind. Well, what was I supposed to say? Did I mind indeed. Not at that moment, no. In fact, I believe I was involved in something, like putting together a submission or some other brain-taking task. But somehow, I knew there was a chance that I would mind. But what could I say? I had no actual objections. So no, I didn't mind. What was I supposed to say? Who says no? Who says I mind? A selfish person.

But guess what: I do mind. I haven't spent any fucking time with my husband who has been DROWNING in work with no real foreseeable outlet in the medium term future. He's sacrificing to pursue his dream. I get that. And he's doing really well. And I am so proud of him. And there will be Vegas in a week. I hope. But the last time we were going to go to Vegas, he got very, very sick the night before. And I'm praying it doesn't happen again. So yes, I mind that they're here because I wanted to spend a goddamn weekend with my husband. All the fun family shit we're supposed to do with THEM, I want to do with HIM. We both have chronic illnesses, me and him. But this weekend, neither of us are sick. My family visited just a few weeks ago. I feel like his family JUST HAD TO VISIT AGAIN, just to keep the ratio as uneven as ever. I know some of these feelings are irrational. And some... some of them may have valid points........ {trails off}

But I didn't speak those feelings. Now I blog them. I blog them to the entire fucking world because maybe my back spazzing will spaz a little less. In fact, I swear I can feel it unwinding just a little. {insert maniacal crazy laughter here}

*head desk*
*head desk*
*head desk*

Tuesday, May 22, 2012


I just got back from an appt with A. We did something a little differently this week. We used trigger-point therapy (on my neck / back) and energy work to release some of my pain (physical) and fear / negativity at the same time. The trigger point technique is a good match for this idea of release because it gives me something to focus on and then let go. When we were done and I came to all the way I thought to myself, "Huh. I really feel different today." I see A pretty much every week and many times, I leave feeling rearranged but still hurting, if that makes any sense. Today there was a marked difference in my thoughts as I left the yoga studio. The studio exits onto a very un-yoga-like scene. The south side flats are (is?) simply bustling with drunks and brimming with gutter punks. I often feel my chill vibe evaporate before I get half a block to the corner. Today though I was feeling unusually serene. Every time I tapped my cane I thought in my head I exist you exist I exist you exist and it was all very.

I think that put me in the headspace to receive the following message. After A, I stopped by Dairy Queen and had one of their evil-on-so-many-levels Confetti Cake Blizzards. These are Satan's own crack and it's good they're only around for a month. Whilst eating, I surf the internet on my phone. And recently I've been seeking out the pages / blogs /whathaveyou of other poets with disabilities because... if I can't have an actual in-the-flesh mentor, I'll read a lot and see what the experiences of others are. I came upon this column by Ona Gritz on the Literary Mama website. It's called "Guardian Angels of the Staircase." Gritz has CP. She live in a walk-up with her husband and teenage son. The column begins when Gritz is in the supermarket and she does the thing that everyone does who commutes not-by-car. Essentially told herself as she was shopping I'm totally keeping these bags light enough so I can carry them home okay and then surprise! Exceedingly heavy bags. She gets to her building and is sizing up the daunting task of taking all those grocery bags up four flights of stairs when she sees people she knows coming down the stairs.

"Do you need help?" the woman asked. My first instinct was to refuse politely and struggle up the stairs. After all, they'd just come down five flights and were on their way out. But then I thought about all the times Dan answered that same question with an enthusiastic, That would be great! Being blind, he'd never be able to live his rich, busy life as both a poet and an access technology consultant without accepting help now and then. As a physically disabled woman living with an elevator that's been out of service until further notice for the past six weeks, I've come to realize the same is true of me. 

I was like wha----? She's so .... positive. About the receiving of help. She takes the woman's help. The only reason she considers not taking it is because she feels too polite. Need I remind my loyal readers, that whenever people ask me if I need help, my first thought is wtf bitches, do you think I'm incompetent? 

After relating another incident where a neighbor helps her carry heavy stuff up their stairs, she ends that anecdote with : 

"It wasn't all that heavy," he shrugged, flushing, making me realize he preferred not to be recognized for what he'd done. Was it shyness? Maybe in part. But more than that, he'd simply helped me because he could and because I needed it. Neither for acknowledgment nor for praise. One perk of disability is that I get to see the best in people.

One. Perk. Of disability. Is that she gets. To see. The. Best. In people. I was reading and in my head going ?! ?! ?! I was thinking about my own experiences and, well, how different they were. Not that I have had only negative experiences, but that it's been ... rocky. Mixed. I would never make the statement that having a disability means I get to see the best in people. And I thought about what A has told me before, how people's reactions mirror my own energy and how I can "show" them how I want to be treated by projecting an aura of comfortability with myself. Which I kind of get and kind of don't. Part of me is like, yes, that is true. And the other, larger part of me is like, it is not my motherfucking responsibility to show people how they should treat me. Especially strangers. 

You can see I have some anger issues here. Like an entire landfill of them. Honestly, the only person I've ever truly felt comfortable asking for help from is Mike, and that comes with its residual feeling of guilt, because I worry that I rely on him too much. 

It's a short column. Gritz ends it with :

The medieval Jewish philosopher Maimonides considered anonymous giving one of the highest acts -- a commandment filled for its own sake. The one form of giving he placed above it is where the altruist finds a way to communicate that she or he and the person in need remain equals. I've definitely needed more help since the day the elevator went bust. Often, it's my family who jumps in. [. . . . ] But just as often, it's been my neighbors, many of whom I hardly know. Yet not once have I been made to feel like that poor crippled single mom on the fourth floor. Life's been a little harder for all of us in these long weeks of living in a walk-up. We're a little wearier for it but, on the upside, maybe a little thinner too. Most of all, we're in it together and that's never a bad thing.

I love this idea of "where the altruist finds a way to communicate that she or he and the person in need remain equals." I definitely feel shitty and "crippled" asking for help. Or even contemplating asking for help. Part of that may come from the other person, but part of that is coming from me. I don't know how to separate the two out, so that I can work on the me part. There's a whole lot of anger tangling these two negative aspects of helping. I will try and enumerate.

1) Most of the time, the question "Do you need help doing X?" angers me when it's a) from a stranger and b) quite clear to me (and I feel should be clear to the other person), that I don't need it. 
2) An example of this is, no man is catcalling at me anymore now that I'm using my cane, but a slightly higher class of man (you can read that as, less drunk) comes up to me and asks me if I need help crossing the street. Think about it. It's always men. And always a certain type of man. I want to ask them if I was a blind man would you consider me capable of crossing this street? And / or if I was a little old lady with a walker would you consider me capable of crossing this street? 
3) As a kid I was mainstreamed. I will say I was aggressively mainstreamed. And I didn't want it any other way. I've covered this before. I don't think I knew what the other ways were.
4) My dad has this kind of paranoid (is that the right word? I don't know) streak. As a kid, he was always warning me about people who were gonna take advantage of me. I'm not saying that these warnings necessarily came in the context of my disability... they sort of came all the time. And whenever he wanted / wants to encourage me to ask for help he always says use people! use them!
5) I have stranger issues.
6) I have man-stranger issues.
7) I still have not found a good place to put all this anger.
8) I didn't even realize how much anger I had for most of my life. Like, until maybe two years ago. But it's been accumulating for all the years previous to that. 

This list makes me want to cry. This list makes me want to ask a higher power to please send me some positive helping experiences, or allow me to pay attention to the ones that already exist. I wish I could trust the world more. This anger is so heavy to carry. But I can't trust. I can't bend. I'm just waiting to get slapped down again. These voices are my inner dialogue.

I don't think Dear Abby can handle this one...

So yesterday was unintentionally weird. Hm, do weird days ever happen intentionally? Anyway, I have this colleague. She's a bit older than me and she lives with her sister. Both my colleague and her sister have grown daughters who are in abusive marriages and refuse to leave, even though there are kids involved and absolutely everyone in their circle has been like LEAVE HIM. When I see my colleague, sometimes she will vent about the things that happen to her daughter or sometimes her niece, and it's always triggering to me.

I was in an abusive relationship for five years. He was my first boyfriend. It went from when I was 15 to about 20. I don't like to talk about it and I don't think I've blogged about it yet, and I hope to not have to do so in the future, but it's relevant to the story. Anyway, I still have PTSD from that. It mostly hangs out in the background and / or manifests itself as this constant social anxiety I have. So yeah. That happened, and I'm still affected by it. He messed me up real good. But I run through the aphorisms like dwelling on bad shit is like letting that person live rent-free in your head and living well is the best revenge etc. And I'm on a lot of pills. So I'm simply super; thanks for asking! {ting}

Thus, when I say triggering, I mean triggering a PTSD flashback. Yesterday, I saw my colleague. She was really upset. Apparently over the weekend her niece's husband had "beaten the hell out of her" "fractured her front teeth" and "choked her with a cord until she became unconscious." Annnnnnd apparently the kids saw everything and the oldest one (about kindergarten age) knows what's happening. And she, my colleague, is still worried that her niece will go back to her husband even though this is the worst the abuse has ever been. I expressed upsetness and disappointment and anger and all the stuff you would expect... I tried to be supportive... then a little while later my colleague, who knows very vaguely that I had been abused --I may have mentioned it when she told me about her daughter and niece and their situations --starting asking me really personal questions about my abuse.

I was sort of shocked by the fact that she would ask me these personal questions, but I gathered that she was really life/death worried for her niece, that she wanted to know the perspective of someone who had been there and come out of it. So the questions were like, "what was it like?" "why did you stay?" and "why did you leave?" I sort of felt obliged / shocked into answering. I like my colleague a lot. She's a warm, giving, genuine person who devotes her life to helping people. And I think she was looking for some advice about how to convince her niece / daughter to get out of these marriages.

When the conversation was done my colleague was all like, "you're amazing," and I was all like, "I'm okay," and she was like, "No, really, you are; you're amazing," and I was all like, "I have trouble accepting compliments heh heh." So we sort of shared a moment there and I hope I helped her in any way that I could ..... BUT ...

I had started my day full of energy and plans. After she left I started in on my list of things to do, but when it came time to go outside... I had already packed my laptop, computer, notebooks all my crap.. and my brain was just like NOPE. NOT GOING OUTSIDE TODAY. And I was trying to appeal to my brain's reasonable half. C'mon brain, you need some distraction.

I plowed ahead with more "inside" tasks, which included calling my mom to get a family recipe for a cake as part of a poetry project. I wrote down the recipe plus her commentary and the conversation was really hilarious and actually kind of nice because my mom and I were talking about baking and baking brings her out of her constant, profound depression. She used to be a pastry chef. She's an AMAZING baker. Was. Is. She doesn't bake much now but when she does it is amazing. I am an okay baker. I don't do cakes so well. We talked about my problems and she diagnosed the problem and gave me some simple solutions to fix it. She also talked about when she first started how her cakes were flat and dense and horrible and she just kept practicing until she got good. I was like, "I can't even fathom the idea of you making hideous cakes," which made her laugh. By the time I was sentient her cakes were awesome.

After that I tried again to move my body outside. I had my stuff packed. I was looking cute. The bus was gonna show up. And brain was like NOPE. WHAT DID I TELL YOU? And I started have a gigantor panic attack that lasted on and off for the rest of the day until Mike got home.

When the panic was "on" I laid on the couch, watched tv and played Bejeweled. When it was "off" I tried to move ahead with some poetry stuff. But mostly, I was not very productive and it made me feel guilty.

Here is the Dear Abby part. Like I mentioned, I like my colleague. I want to be supportive. But I fear that --especially now that we've shared this moment --that she will think our intimacy has leveled up and we can talk about stuff like this more often. Except even before yesterday I was thinking my colleague can be so triggering; I wish I knew how to respectfully tell her to back off without it being mega-awkward. I don't want her to know that she's triggering me. I just want her to talk about something else. Like animals. She has three cats and three dogs. Like me, she carries pictures of her animals on her phone. You see? Different conversation tack.

Luna is now making incursions on my keyboard and I'm afraid she's gonna erase my entire entry, plus make a large monetary contribution to the Republican party on my behalf.

Friday, May 18, 2012

Bi-visual (pt. 3) : The Epic Conclusion

For the purpose of finishing what I started, here's part 3 where I finally talk about Cathy Kudlick. Kudlick is a scholar. My sharing of her article doesn't come with much good scholarly commentary, as I had wanted it to. There's one cat in my lap, one destroying small items around the house, and a pile-driver going off outside my house. And one cup of coffee has not woken me up sufficiently. So I mostly share large bits from her article and talk about my personal reaction / recognition.

TO RECAP: I may have mentioned that in my internet searching quest for others who have the white-cane-social-anxiety thing, I accidentally googled myself and I was like blargh sad sad sad. Then my new cane arrived. I thought ooh! the shiny! new! cane! will help drag me outside and put this social anxiety thing to rest, at least temporarily. Because I couldn't wait to try it out.

But as I started testing the cane in the house, I had some problems adjusting to the new telescoping style, so elegant designed but so different from what I was used to. So I searched for a video on how to properly use it --nuthin. But then I widened my search result to something really generic like "telescoping white cane" and came upon, not instructions for use, but a belated reply to the search I had conducted a few days earlier. 

Kudlick's article from Disability Studies Quarterly presented me with another perspective of someone trying to navigate this in-between (i.e. blind / seeing) space --both internally as she tried to integrate it with her past experience of inherited eyesight problems and her family's paradoxical denial of them, but also externally, as someone "coming out" as a cane user in her adult years.

You have to understand, the amount of other blind people that I know is actually rather limited. Like I can count the number on one hand. And I don't need the whole hand. So when I saw this article it really meant something.

She has a different type of blindness than I do, but about the same amount of overall vision --though it's traits differ from mine. For example, she can ride a bike; I can't. But I think I have less trouble reading than she does. But but but...  here's a paragraph that could have come out of my own life:

Beautiful as it all has been, my vision remains unreliable. One of the many operations I had as a young adult required the surgeon to enlarge my pupils, with the painful consequence that my eyes are permanently dilated, and thus extremely sensitive to light. I also have nystagmus, a series of rapid muscle movements that causes my eyes to vibrate, jump, and wander, and generally carry on a rich life of their own. This makes life especially interesting in crowded, chaotic places such as airports or hotels. Since I lack depth perception, I'm easily confused by shadows, brick walkways, curbs, changes in floor texture, and steps. One instant I might have what I imagine to be a nice clear snapshot with bright colors and clear lines that define shapes or even people who I recognize. Another, the world comes to me through a series of rapid images that fly by so quickly that my brain can't keep up. If I meet someone wearing a blue sweater early in the day, I can easily find her in a crowd - until the next day when she wears something different, or later that same day when she decides to take it off.
For years I struggled with how to explain this in the first split-second encounter with every new person I'd meet. I had to find a way of letting students know that I couldn't see them while still coming across as a competent teacher. Other times, I found it impossible and humiliating to explain to a friend or a colleague....

Finding these words were so... "comforting" is not the right word, nor is "inspiring." It's more like you've been hollering down the shaft of a well for so long, hearing only your own echo, and suddenly you hear a voice from the other end saying, tentatively, "hello?"

She talks about labels and the inadequacy of them. Not that I'm in a hurry to label myself, but we live in a world where it is helpful to be easily categorized --at least in this milieu of "split-second encounters" she talks about. I want to be able to say to someone quickly and easily this is what it is.

 There wasn't even a term to describe someone like me. My first label, when I started to encounter people outside my family, was the impossibly vague "nearsighted." (At first I thought I was "near-sided" because I walked close to things to see them.) There was "visually impaired" (vague), "legally blind" (vague and legalistic), and statements such as "I don't see well" (vague and euphemistic). "Low vision" also had its drawbacks, linked as it was with "low intelligence," "low functioning," and various other "lows." There was even a vogue for terms such as "sight impaired" and "visually challenged" or — my particular nomination for the Most Condescending Award — "Visually Impaired Person," a VIP.

I think this first sentence below says a lot. Deep down, most of us want to belong to a place. We want to be able to indicate this is who I am, and for others to get the message, whether they understand the experience or not. 

More important than labels was that I didn't seem to fit into anyone's conception of how either blind or sighted people act in the world. This became apparent as I tried to sort out if and when to use my white cane. To be sure, it can be a huge help by enabling me to walk with more confidence in unfamiliar or dark environments. It also allows me to ask colleagues and students who they are, rather than play my usual sloppy game of dancing around identities until I trick them into revealing themselves....But the cane also introduces its own set of complexities because I don't always need it, and frankly, life is simpler when I can do without. Like an umbrella when it isn't raining, the cane effectively eliminates the use of one arm. 

I would just like to say it again. THE CANE EFFECTIVELY ELIMINATES THE USE OF ONE ARM. So to those people who are incredulous (I have had people come up to be and be like, "you don't seem like you need that") I want to say... would I be using it if I didn't? Seriously. Think of all the things you can do with a multi-tasking set of two hands. You can do any number of these things at the same time 1) carry a handbag or brief case 2) hold your coffee 3) hail a cab or bus 4) walk your dog 5) push a stroller 6) schlep a bag of groceries 7) read a book at the bus stop  8) text  9) peruse the merch outside that new house-of-cute-dresses that recently opened up 10) use an umbrella... and so forth. I guess I get cranky on this point too because..... because I could get by without using it... just not as safely and I could coffee-text-hail-bus-etc. But I've made this decision. Cos I'm sick of passing. And pitching headfirst off curbs, having cars suddenly turn in front of me.... I guess in a way I'm grieving the use of my arm. That sounds over-indulgent, says the judge in my head. 

And of course sighted people's condescending, panicky behavior around white canes also deters me; in some situations I have enough vision to see people dart out of the way or I experience their little eye tests when they plant themselves in my path or stick out their tongues. And because I can obviously see things ... I know [people] must wonder about the woman escorted to the airport departure gate with her white cane, only to start checking messages on her Blackberry and read from her Kindle.

This last sentence (about the Kindle) really got me. I like to take pictures. I like to make art. And jewelry. Visual things. When I attempted this white cane experiment before, in Ohio, I felt acutely self-conscious whenever I would whip out my cell to snap something interesting. Like 1,000 eyes (or just one pair) would be watching, thinking... huh? 

Ever since I chose to use a white cane in selected situations, I've collided head-on with society's (undiagnosed) case of "cryptophobia" - my term for everyone's panic in the face of ambiguity. It might be the same angst many feel when they can't immediately determine someone's gender; as they search their data banks for clues - expected behaviors, dress, voice, gait, facial expression, body space - they overload if some detail doesn't come to the rescue in fixing the mysterious identity.

I wrote a poem that engages this concept of "cryptophobia," --both my own of myself and those who see me --called "Suites for the Modern Dancer." And I would like to write more poems to explore this subject. You have to understand, this is, again, the hello from the bottom of the well. I've never personally heard / read about / met anyone who had this experience, as it pertains to vision / not-vision.

And so I return to this idea of naming, and the inadequacy of names. 

But how to describe the person who actually sees this way? How to harmonize how I see with how I want to be seen?
I think this phrasing is very important ---how to harmonize how I see with how I want to be seen? That is something I have yet to determine. How do I want to be seen? When I have a choice, what are the parts of me I want to display? How will these signifiers be interpreted? 

The telescoping cane does not contract as easily as it expands. Yesterday, by myself, I used it in the drugstore and a coffee shop, instead of folding it up and putting it in my purse. This goes further than my original declaration to myself to use the cane outside; only inside if it's really busy / crowded --airport, hospital, conference. How do I want to be seen? 

And... I have to stop now. Luna keeps climbing from my lap onto the keyboard onto my desk into my coffee knocking papers and books asunder. I have a headache. My eyes are starting to jounce about. Rest time. I haven't even gotten into the tattoos yet.

Tuesday, May 15, 2012

It wasn't a lifestyle choice; I was born bi-visual (pt. 2)

In the second installment, I talk about getting my cane.

So, to pick up where I left off, I was feeling anxious and angsty about not going outside, and I googled and found my blog and it just made a meta-mess in my head. So I texted Mike asking if my new cane had come yet. I don't get packages sent to our house because of this ridiculous UPS injunction that was put there in response to a previous tenant, where they ALWAYS required a signature upon delivery. And we can't lift it. Even though we own the damn house. Anyway... Mike texted back Probably? A package for you from the blind something or other came and I was like !!!!!!!!!! NEW CANE.

When he got home he gave me the package and suddenly I had my doubts. It weighed nothing. Like when you are expecting your new laptop and Apple sends you this laptop-sized box but all it contains is the paperwork for your extended AppleCare warranty. I was like ... this is paperwork for my cane? A slip to say it's out of stock? It didn't help that the outside of the box said FREE MATTER FOR THE BLIND OR HANDICAPPED. In retrospect, maybe they get a discount postal rate or something if they put that on the outside. When I opened it up, I found MY NEW CANE. And a very brief instructional sheet labeled Shipping Type: Free Matter.

So, first of all, the new cane comes in a velvet case. Like something you might to cradle a small musical instrument... like a piccolo maybe? And it really does weigh nothing. Though the new cane is six inches longer, it weighs a little over 3 oz. The old cane weighed 9 oz.  Here are some pictures of the new cane. It's quite sophisticated looking. 

In the first one, you can see how long it is but also the clean design scheme. It looks like the tuxedo of canes. In the second, I'm trying to get a close-up of the words on the first section. It says Designed by Chris Park, Carbon Fiber, and gives the NFB address. 

And lastly, I like this detail: The little icon depicts the action of the blind person using the cane as one of elegance and grace. I appreciate this gesture, as I don't often feel elegant.

When I tried to use the cane, however, I felt quite less elegant and wanted to request an immediate in-service with Mr. or Ms. Park. This cane is gorgeous, ultra-light, and elegant-looking, but the telescoping aspect is going to be difficult to master. Also, I worry that the supremely broken sidewalks of my neighborhood are gonna reduce this baby to a bent length of awkwardness in about two minutes. 

See how cute the new cane is? With the elegant tip on the end? Much nicer looking than my old canes' "pencil tip." The picture below shows what a pencil tip looks like (except my tips were narrower, more like the diameter of the cane itself). Thanks to The Carroll Center for the Blind for "letting" me borrow their image. The cane below more-or-less looks like my old cane(s) except mine were made from aluminum and I'd decoupaged the handles so they weren't so ugly.

Anyway, that pencil tip was rugged. And see how thick the overall cane body is? My cane(s) took a beating. I'm really concerned that this new one is a bit of a hothouse flower. Now, on to the concept of telescoping. The instruction sheet reads:


We hope that your new telescoping cane will serve you well. Here are some tips for extending the longevity of the this cane.

Correctly Extending and Collapsing a Telescoping Cane

To extend the cane, pull out each section fully; then twist it with the section above it to tighten the connection.  To collapse the cane, untwist each section to loosen the connection.

NOTE: Do NOT attempt to collapse the cane by banging the cane straight down on the ground, [I admit I thought about this within the first five seconds of deploying the cane before reading the instructions] as the pressure may damage the cap! Always untwist the sections to loosen them! 

At this time we do not have replacement caps available for most types of telescoping canes. However, replacement tips are available. 

I had to read the last sentence several times because at first I thought it was directly contradicting itself. I still haven't figured out the difference between a cap and a tip. And after practicing with the cane so that I wouldn't look like a megadork in the field, so to speak, I'm still either tightening those sections too tightly, so that when I need to put it away, I'm standing there trying to un-tighten the sections for whole minutes OR I don't tighten them enough and the little lowest section collapses as I try to use it. I seem to have more of a problem with the former (over-tighten) than the latter (under-tighten), but internet searches reveal that some people have a chronic problem with this type of cane collapsing as they are using it.

I may wait on Part 3 of this entry (where I finally talk about Cathy Kudlick and her epiphanic DSQ article) because my eyes are really tired after doing these two. I may just go upstairs and watch some tv while practicing the tightening / untightening thing again. I searched for videos on precisely how to do this, but nay. 

Do they mean give it a little twist or really screw it in there? 
Are the insides of the sections in fact threaded or do they achieve tension by some other means? 
Have I, in fact, completely lost my ability to perform so simple a task as righty-tighty-lefty-loosey? 

Let's just hope the box doesn't end up being the best part.

(That's Ruskin, my oldest. Don't disturb him in his new bed.)

It wasn't a lifestyle choice; I was born bi-visual (pt. 1)

Okay, this is gonna be an epic blog entry. First, two things. Wait, three. First thing)) this is who I have sitting in my lap as I type.

It's Luna, my youngest. Isn't she adorable? She likes to recline with her lower half and then cling to my boobs with her front paws (claws, really). Ouch. But it's nice to have such a supportive friend around when confronting heady topics on one's blog, such as this concept which I have termed for short-hand purposes, bi-visuality. It's Cathy Kudlick's term. I'll say more about her later in part 2 or 3. You know I've been exploring this same concept. What I've found out over the weekend is that there are many blind people doing the same. I read a stat that 85% of blind people who use white canes have some usable vision. I think I got that right. I'm sure about the number at least. Bad academic --I'm not going back to re-locate and document my source.

Second thing)) waiting for my cane and angsting over the vicissitudes of bi-visuality, I found out that there's a list of blind bloggers. I added a link so you can see who they are too! I thought, when I found it, this may be the beginning of the support I'm looking for. And then I promptly "forgot" about it.

You see I have this avoidance problem. Sometimes it manifests as "I forgot." Am I making sense so far? I'm only on my starter coffee, and the adorable kitty that I snapped just moments before is now dismantling the dining room piece by tiny piece, and I'm distracted putting all this effort into ignoring her.

Third thing)) NEW DEFINING EXAMPLE OF IRONY : Yesterday I was practicing another one of my avoidance strategies, procrastination, and I was procrastinating going outside. Some days I just don't have the psychic energy in me to deal with the strangers who make my life-with-cane difficult. And it was raining. And I was doing a LOT of house chores. But I still was feeling bad about myself for not going out. Calling myself bad names indeed. And so, looking for some internet support / advice  I googled  "white cane" "social anxiety." The third and fourth hits were THIS BLOG. I was like really? Universe? Really? 

In Part 2, I finally get my new cane... and wish it came with better-than-IKEA-quality instructions.

Saturday, May 12, 2012

a) nightmare b) some good news

So I woke up this morning because Ruskin yowled and yowled. I was grateful because I was having a hard time breaking free of this nightmare:

the university for which I previously taught (and in the dream was still teaching at, or trying to) had a principal. A principal, like at a high school, who disciplined all the students and also made the hiring decisions. He looked like the Bob Kelso character from Scrubs.

I had made him a PowerPoint (as part of an interview portfolio?) in which I described what it was like to be blind. I used both an argumentative approach and also a poetic one. Like, logic entangled with metaphor.

Except I accidentally hit the "send" button (PowerPoint had a send button) and it whisked into his inbox without revision. I got it back with a big silly asterisk in the corner. It said F+ --"your arguments are not strong enough."

I wrote a groveling email in which I tried to explain the accidental hitting of the send button and could I have more time to complete the assignment? Instead of waiting for a response, I decided to just revise the damn thing and send it off again. I got his response. This time it said F* --"_________

and then I woke up.

The good news is that (I think I can share this? I haven't signed a contract but I did receive an acceptance email....) I'm teaching in the Young Writers' Institute this summer, high school level. w00t!!!!!

Wednesday, May 9, 2012

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.

Tuesday, May 8, 2012

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.

Saturday, May 5, 2012



ciliary     muscle
orbital     muscle

Canals of Schlemm

ciliary body
optic nerve


lens sac

Friday, May 4, 2012


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.

Thursday, May 3, 2012


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.

Wednesday, May 2, 2012

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?!" 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 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." 


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.