20things : Dream Cake

1. In my dream there was cake. 

2. Dream cake is better because you can eat as much as you want and not get sick or fat.

3. I should mention it was in a ballroom or banquet hall with small clothed tables, each set with a tiered cake.

4. The cakes like small castles constellating the room. I walked carefully, afraid I was going to tilt into one of them and knock it over.

5. Along a long wall, in front of a bay window, was the biggest cake. It looked, perhaps, like a wedding cake to feed overflowing guest list.

6. It was taller than me. No way could I touch that top tier.

7. The icing was sort of a champagne color, and there were sugar bows (the color of hammered brass) rivering up and down. 

8. I didn't say it was pretty, just impressive.

9. The piping was also impressive.

10. And then a waiter came, magician-like and tugged the corner of the cake (I was beginning to see the illusion)...

11. ... and whipped it off like a blanket, to unveil a coffin.

12. The bottom tier of this cake was in fact a coffin.

13. I read the script on the side. My mother's coffin. 

14. I turned to my mother and instead of asking why have you picked out your coffin already or why have you picked out such an ugly coffin I observed your name is spelled wrong. They left out half the letters in your name. She has a long first name.

15. She kept her usual stubborn, impassive face on. 

16. I was like, Mom, you gotta send it back.

17. She did not puff her lower lip out, but if she were a child, she would have.

18. She just said it doesn't matter what it's spelled like and huffed off.

19. I turned away from her. What else could I say? After all, this had happened so many times before.

20. I wish I could state that then I went and sampled the other, more cake-like cakes. After all, dream cake is so much better.

Ink Me Up (pt 1 of a series on tattoos)

Awhile ago, Andrea Scarpino started this facebook thread about the importance of tattoos. Her status update was Andrea Scarpino "is interested in knowing why you got a tattoo --what does your tattoo mean to you?" Knowing the woman who asked it, this is not an idle question. Andrea and I went to grad school together. Her main focus was poetry, but she also pursued creative nonfiction, women's studies, disability studies... you know, in her free time. So I wrote a lengthy --I had worried at the time, *too* lengthy --and personal reply. Andrea and I haven't been in touch too much since grad school and I thought simultaneously a) this is too forward, to take up so much room on her thread and b) maybe this is a way we can reconnect. I held my breath for a few days until she wrote back... and it was very encouraging. She said some kind things about my writing that sort of surprised me (it always surprises me when people say kind things -- it's not false modesty; I'm horribly awkward at receiving compliments) and motivated me to write more on the subject on my own blog.

To say I've always wanted a tattoo would be exaggerating, but I've always thought that well-done tattoos are beautiful manifestations of art. Since I was in my late teens I coveted other people's ink. I waited to get my own, though, for quite some years after that. And it was good that I waited. The images and symbols that I craved during my adolescence were not personal to me. It was sort of like looking at a designer dress on a mannequin and admiring the color, the line, the beading...and still thinking it would look that way on me.

I got my first tattoo when I was 30 or perhaps 31... it was in late autumn, close to my birthday when I went for it. That year (2005) I had graduated from OSU with an MFA in poetry, and moved back to Pittsburgh about a month after graduating. I don't think I allowed myself to process the fact that I felt suddenly dislocated from my writing / academic / disability community... I had no idea what I was feeling or what the right way to live my life was. What I mean is, I sort of put Columbus in a box, taped the lid down, and pushed it to the way back of the closet. I stopped using my white cane, even though it meant more running into people, falling, nearly getting hit by cars, walking into plate glass, etc. I was a new me trying to stick myself back into a life that felt someone reverted-to-pre-Columbus. Many of my friends were moving on too, but then were moving on to PhD programs or teaching jobs. They had mentors that were guiding them through the process, mentors who acted as stepping stones until they got to the next safe place to alight. 

My mentor, David, had MS. Throughout my time in grad school, I could see that he was slowly getting more symptomatic. But he was still good. There. Believed in me. Pushed me. He appeared, and I mean this in a relative sense, *well*. In retrospect, I think how he must have worked so hard to do this. 

About a month after I left Columbus, I heard that he'd gotten leukemia. I sent him a drawing, a mandala for health... After working so long and hard on words together, I didn't have the right words for him. Everything I wanted to say either felt contrite or was inappropriately complex.

News arrived sporadically over mass emails. He'd been admitted the cancer hospital and was being treated. He was going to be released because he'd achieved remission. And then, double-shock, right after his release... he passed away. The obituary said it was from complications of MS. I went back for the funeral and just... had absolutely no idea what to say, once again. The celebration of his life was held in a packed theatre. Shame on me: I allowed myself to be lost in the crowd. I don't think I even approached his widow. What the hell could I say? I'm not a great talker in the first place. I didn't know his family or anything. Everyone, everyone loved him, and rightfully so. He'd had a whole life outside of school... wife, children, grandchildren, a billion other students and ex-students and colleagues and... yeah. 

When MFAs were getting ready to graduate, many of us made our mentors going-away presents for all their help. I think Carrie knitted a scarf. I don't know if this was tradition or what the whole present thing. But I'd wanted to do something for David. As June approached, I hit on the idea. I sort of "do art" as a hobby. Mixed media, collage, altered books. Cutting and pasting I jokingly call it. I was going to make David a book. And I did. I took snips of his poems and illustrated? illuminated? them. When I gave it to him it was very moving. I didn't want to say goodbye. I think I'd already defended and packed up my office and... practically out the door. This felt like the last thing. I'll never forget how he paged through it so slowly and looked up and me with his smile. I'll always remember the way he smiled... and he said "this is us." 

So fast-forward back to November-December. The tattoo I got was something from one of the collages in the book, and a snip of poetry to go with it. The picture is of two melded faces, a flower amidst brambles... one of the buds on the flower is not a flower but a dragon's head. The writing below it says "lines we work to know by heart / and measure out the distance of a life." 

Even after all my other work, this is still a tattoo people comment on often. They need to get up close to me and read the text. Despite my personal space issues (I need a lot of it) I let them. Many times, because of the two faces melded together (it sort of looks like a mask, I guess) and the bit about "lines we work to know by heart" they ask if I'm in the theatre. I laugh and say no. Seriously, I would make the worst actor. Sometimes I will tell the full story. Most often I just say, "It's for a friend who died."

This is a shitty, distorted picture taken on a cell phone using my non-dominant hand. It's probably a crime against art that I didn't wait for someone to take a better pic before I blogged this... but I figured if you read all the way to the end, you would want to have an idea of what it looked like.

20things : Boxed

1. I made this box out of words.

2. I built it up, each layer thin as tissue. 

3. None of the angles are right.

4. If I set it on the porch in the rain, the walls will collapse. 

5. There is no box.

6. There is only me, and I am tender all over.

7. A strong wind will sway me back and forth.

8. Or there is a box, but it was formed before I was born.

9. If you open the box, you may see a lake on fire. 

10. Will the pain cease to exist if I can find a way not to believe in it?

11. Forget the fucking box already.

12. I played decompensate.

13. It grew from sate.

14. How ridiculous is that?

15.. Sleep is for the sated.

16. Does pain occur at the site of injury, or when the nerves fire and tell the brain, hurt now?

17. It makes complete sense that desiring nothing is the ultimate state of perfection for a Buddhist.

18. Having been raised Catholic I was taught my reward would be in the next life.

19. But nirvana strips you of need.

20. To desire nothing. I could sleep then.

And then this happened.

Sometimes these incidents seem unbloggable. I wonder why I do this. The documentation of them. They are humiliating. Also, I think, people have worse problems, and don't bitch about them. I was raised like that. To suck it up. I'm sharing this because I feel like the more disability narratives that are out there, the faster they will spin into a thread, weave into a net. The net will connect us, and only good things can happen from that.

I might be sounding loopy right now. That's because after this happened I was so shattered that I just came home, cried for two hours and lay in bed thinking for another hour or so. I held out as long as I could. Then I drugged myself. Don't worry: prescription. Everything above board here.

My energy has been off for a few days now. It had been better, until about two weeks after getting back from Vegas. I felt good. I dyed my hair this crazy magenta. I love it. I think to myself, now people have a choice what to stare at. The cane or the hair. I can pretend it's the hair. 

I know... I stick out for many reasons. I'm an embodied contradiction. I always have been. I like to think there's beauty, somewhere, in being so... what is the word.. confounding? I've made many friends, and they seem to support me in all my ... originality. I am happy that there are people I can share my true self with. My sense of community grows by the day, and I'm grateful. Especially since exiting my last job. I can't believe I've only been not-teaching for six months. It feels like a year. And I also can't believe I'm stepping back into the classroom in about two weeks. Yipes. Whew, tangent.

Anyway, my energy was better. Then yesterday, it sort of ... tanked. I get impatient. I'm trying to rebuild six years lost (not entirely, but mostly lost) of poetry community, of academic community where I will be respected and my gifts will be wanted. But I get impatient. I get impatient and then I let my anger get to me. 

Anger, from me, was not an acceptable emotion to have, growing up. You got hit for it. Notice how I switched into the second person there? Yeah, it's still sensitive. You know that scenario, where the teenager stomps up the stairs and slams her door screaming something like, "I hate you," because her parents wouldn't let her borrow the car. That didn't happen in my house. For many reasons. Also because why would I ever borrow a car? Ha, bad bad humor.

I'm in a bad humor right now. I'm trying to tell this story, but it's not coming out right. I have mentioned that in my neighborhood, people don't just do the stare-and-look-away thing, or the move-to-the-other-half-of-the-sidewalk thing. They get all up in your business. See there again, I switched to the second person. 

I do not see many people with visible disabilities in my neighborhood. I don't know where they are. Inside? I would say it is a working class neighborhood. At least the people who aren't on welfare are working. There's a lot of people struggling with addiction as well.

I once came very close to applying for SSDI (basically welfare). Something or someone came to my rescue and I did not. I remember though, how that felt. I also once almost lived in a group home because I could not pull my shit together. I bet you didn't know that. 

So, in my neighborhood, people tend to do things like micromanage my bus embarkation/ disembarking. And my street crossings. It happens so frequently now that I'm really starting to weary of it. It feels like harassment. I want to carry a thought bubble above my head that says SAVE YOUR HELP. In the other neighborhoods I visit, I do not have this problem. As much. 

After a morning full of these incidents sprinkled throughout, I am (I think) headed home for a break and then out to do another event tonight. I get off the bus at my intersection. A man comes up from behind me and says, "You crossin?" I ignore him. 

I ignore him because I am so so SO sick of people asking me questions about what bus I'm waiting for or whether I need their help to do X. I covered this in previous blog posts. I would say 90% of them are men, who ask this. If I need help. Do I look like I need help? 

I'm so glad oversized sunglasses (think Jackie Kennedy) are still in style. I buy bigger and darker pairs each time I lose or break them. I look like an alien, in the mirror. I feel like my face is encased in a glamourous carapace. I try to keep my mouth neutral all the time. I am practicing a certain half-smile though, for pedestrians who are not assholes who acknowledge me as an equal or are kind to me in some way. And I'm writing a poem about the practicing. 

"You crossin?" he says again. No. Yes. Thank you. No. "Yes." My voice comes out harsh, like a bark. I don't turn my head to look at him. He could have been talking to five other people at the corner, but it was me. I knew it was me. In an instant he was at my side. My light turns green. I swing the cane into the street, start to cross. "Wait!" he says, and ... here's the thing that really set me off -- he puts his arm in front of me, to block my crossing of the street. 

I have written before about how I don't like strangers touching me. I'm not a snob. I genuinely have a bad neurological reaction to it. When people touch me, especially strangers, I make this awful half-screaming-half-yelping noise. I can't help it. 

The involuntary noise happened the other day on the bus. I ran into a girl as I was disembarking --not uncommon. I said I was sorry like three times and then she PINCHED me. I made the noise then, and felt so embarrassed. Also violated, and all the panic and disordered thoughts that come after.

It is not that hard to become my friend, but you will probably have to make the first move. I hug my friends. I hug my acquaintances. I warn them first. "I'm a hugger," with the implied statement and question, "Our meeting / parting meant something special to me. Can I please hug you now?" I think it is appropriate to ask before touching, especially if I have not touched someone before. 

So, a strange man has just done a worse thing than touching. A man has actually prevented me from moving through the world. Literally, with his arm, he has prevented this. And there is not a good reason. 

In the past, there was once a good reason. When at CMU, during finals season, I was once so tired I swore I could have lain down on the sidewalk and fallen asleep. I crossing the street, headed to a final and a man snatched me by the shoulder, back onto the sidewalk, out of the way of an accelerating bus. I was glad he did that. To me, that is appropriate touching. He asked if I was okay. I said yes and thanked him profusely. I enjoyed not getting hit by the bus and completing another semester. I was not using my cane then. 

At that point I'd never been introduced to a white cane. As a consequence of mainstreaming, I was given 18 years of specialized training, at the expense of the state of Pennsylvania and at some psychological expense to me, to function solely using the vision I have. As with many situations where one is vulnerable, the psychological expense one incurs, and the intellectual gains one makes, depend greatly on the quality of the actual human contact one receives. I had good mobility instructors, and bad ones.

Now I use the cane. I use the cane to see the ground so I can employ my usable vision to, for example, look for stoplights, and their color. Vehicles, and what their turn signals, their front wheels, may be doing. 

The good thing about stoplights and vehicles at an intersection is that they are most likely where you'd expect them to be. So my shred of vision and the object I'm seeking line up. I also use my ears to listen to the characteristics of the engine noise at the intersection. These things have become pretty routine, but I cross the street with a greater amount of concentration than perhaps the average person. This is why my friends who jay-walk, and want to take me with them on their death missions, freak me out.

When a man jumps in front of you, yells something at you, touches you, and bars you from moving, he is not where you expect him to be. I did not expect him there. My vision dances like a movie shot on a handheld camera by a drunk person. That is what my vision does, much of the time. It used to give me nauseating attacks of vertigo, when I was a kid. I threw up a lot. My mom thought I was "faking." Faking what? 

He has barred my path and this has set off more than panic. I've never screamed at a person in public before, for "helping." But this is, like, totally, this is off the chain. "What the fuck? Dude! He's got a red light! He's going to stop!" I don't know how much of this is coming out in words that another person can understand. My voice sounds underwater, to me. He backs away with that hands-up-I-surrender look and says... he really says this...

"Oh man. My bad! I thought you couldn't see!"

And now I have stepped from reality into post-modern land. I have stepped from the curb and I am in the middle of the intersection, of the cultural intersection, of the liminal intersection, of the literal intersection, while he backs up onto the sidewalk. I know this traffic light won't last forever but I am just... pinned in place by the utter -----

I cannot muster the words for what I need to say. I cannot get them out of my mouth. And later, when I cry for two hours so loud I fear the neighbors can hear me, saying "oh god" over and over... it is a little bit because he has touched me, but it is mostly because I am so inarticulate at this moment. I gesture like Vanna White at the full length of my cane. "I... I sort of... " the next word was either "can" or "can't." It doesn't matter which, because the truth is, I sort of can and I sort of can't. See.

However, even if my eyes are being all "can't" instead of "can," I can fucking handle it. If he thought I couldn't see, why does this still give him the right to interfere in my travels? I can sense that truck, perpendicular, to the left of me. I can't see the light or what color it is. I'm done with him. I think I'm done with the fucking world. I charge ahead toward my destination, muttering fuckfuck fuck FUCK fuck fuck loudly and softly and loudly, so that I probably seem crack-addled myself, and I don't care. 

20things : Proofreading

1. I am trying to proofread the manuscript this morning.

2. I go through this at least once a month and still find things out of place.

3. I am working from home. I work from home now. Or coffee shops. But right now home.

4. Wrong verbs.

5. There's a thin line between revision and proofreading. I cross and recross it.

6. Somewhere in this four-story house a smoke alarm is low on batteries.

7. The poem is never done.

8. I have trouble letting things go. I get too attached.

9. Each time it chirps I can feel the sound actually reverberate in my head.

10. I wouldn't say I'm a word hoarder or anything. Perhaps verbose.

11. One cat whines for food. One cat is trying to quietly destroy something in the next room.

12. Chirp.

13. Why does it say "no section break" when I meant to write "no stanza break?" Section?

14. Mike says the offending alarm is in the attic but I went to the attic to collect some papers and you can't hear it from up there.

15. My work area, with the big monitor, is down here. The one I can most easily see from. Still ... how am I finding all these mistakes?

16. It's like each revision washes away the previous efforts at proofreading.

17. The cat who whines for food has now gained the top of the filing cabinet. In my blindest spot. He means to jump quietly but sends books and papers into the furthest corner behind my desk, where it hurts to bend and reach.

18. My hips are iffy this morning. How am I so--

19. Chirp. Meow.

20. Next page.

20things: Talking points

1. I don't think it's exaggerating to say that in January I began to emerge from a six-year fugue state called wage slavery + chronic illness.

2. I looked around for my comrades but they had scattered or fallen away.

3. In the meantime I'm trying to carry out everything I meant to do in those six years. To pick up conversations where I dropped them. [not drowning, but waning]

4. Please write me back. 

5. And considering not killing this tomato plant.

6. It's really hard to kill a tomato plant.

7. Keep in touch. Take care.

8. I used to have a thick garden. I would wander among the containers, watering, pruning, testing. It felt like immersion, like not-thinking. When was that?

9. Last summer I let two small basil plants die. Every day I made the choice to neglect them, until their stalks shrank and crawled along the porch floor. Pent anger was starting to leak out of me like when you view a house, on fire, from the street, but the fire is still furtive. Was that a flamelet creeping up the siding? Does anyone else smell smoke? Did you hear an alarm?

10. [Casually]: Did you get my email?

11. Sometimes you can't anticipate a full system crash. And sometimes you can just feel it coming... a spirit haunting the circuitry. You take steps, make preparations.

12. She made an observation about my heart chakra but I wasn't paying attention.

13. The writing is going great. {{{{take large sip of cocktail}}}} I have so much material I don't know what to do with myself. {laugh now}

14. Sometimes I fantasize: I push my hand down into the dirt, scrape away the superstructure until I find the root ball... and then just pull hard and fast until the whole thing comes up in my palm. And then throw it as hard as I can onto the concrete.

15. You're canceling the next workshop? 

16. Nothing will stop the thoughts from revving behind my eyes, between my ears. Nothing that I'm willing to mention here, anyway.

17. Did you get my friend request? I don't mean to seem needy. No, delete that. Don't send.

18. My latest bruise is dissipating in the form of an eye, an arched eyebrow. I swear I can see a hint of cheekbone. These things don't show up the same in pictures.

19. Hello. Hey. Hiya. Halloo. Howl. The speaker in this poem says what?

20. pls wrt

in the walls / underneath the floors