walking on spiderwebs, or cage / page / stage / rage

I live caged gently in charts. Little black grids on white pieces of paper. Or black marker on a white board. I write in tally marks, numbers, skill descriptors. I write in red pen. These grids contain my feelings because my feelings are too big and threaten to overwhelm me, shut me down, reduce all forward action to zero, leave me in a valley of couch and comforter and unending ache. I am somewhat afraid of my feelings. So I give them numbers. Anxious, zero to five. Sad, zero to five. Happy, zero to five. Suicidal ideation, zero to five. Zero to two is for passive death wishes; three is when I start searching for my safety plan. Where did I put that again? Self-harm urges, zero to five. I have been in recovery for self-injury for seventeen years. I know this because i have a cat who is seventeen years and I got him as a kitten the year I went into recovery. Cats have finite lives though, and this one is doing less well than I would like, but he's okay. He's around right now. 

Sometimes i have to live in the right-now because the bigger landscape of my life towers over me, distorted gothic thing that it is. The sky looms big and heavy like it will come down to suffocate me with cloud. Buildings are *so* tall, they sway in my vision like they want to fall down on me. 

I like it in my apartment. It's safe here. I can hear my neighbors' muffled conversations. The woman down the hall has a dog, a big one by the sound of the bark. I'm glad my cats haven't taken umbrage in such a way that would involve fluids.

I have to push to go outside most days. The gaze of strangers is unsurprisingly yet somehow unexpectedly searing. I walk with my eyes cast down, looking up in little flicks, half-second increments. It is illogical how I reduce the field of my vision even further than it naturally is (natural about 5% of "normal" seeing). This is how disabilities collide. I blind myself further. 

My father always told me to keep good eye contact with people; that's how they know you are trustworthy. But if good eye contact is a learned skill, then how can you tell people are not lying to your face? 

I can't see faces very well. I have to stare and stare. My eyes point in different directions. My pointed stare makes people who don't know me uncomfortable. It makes me uncomfortable too, so much raw visibility on everyone's part, so I don't do it that often.

This is not "some days" for me. This is my every day. 

I find a deep joy in writing, in running my journal, in being with my friends and my husband and reading books and petting my cats. But I am alone a lot. It takes self-discipline to do work, because I don't have the structure of an office, the white noise of other workers working. I go to coffee shops a lot to simulate this environment, but they are not without peril. The screaming toddler(s). The man who wants to talk to me despite the fact that I am clearly working. Internet that suddenly goes down. 

Discipline and responsibility. I hear the voice of my father when I say those words in my head. 

Yesterday I went outside to do work, but today I think I will stay in. It's not good in my head right now. I mean, even relatively speaking. I have a whirlpool of fear and self-doubt sucking at my heels. I have an enormous work task that seems possible or impossible depending on what moment I'm inhabiting when I look at it. I am pretty much motivated by fear right now. I can't reach joy today. 

I'm scared of being a disappointment, always, eternally, not good enough, frantically working to keep up, keep my secrets, keep going.

I pretend I'm good. I pretend I'm well. I'm really good at pretending I'm well. Therapists even have a fancy phrase for what I do, something about performing better than I actually am...I call it "masking." It happens unwittingly. Haha. I was just having a moment there. No, I'm not that sad. No, I'm not that scared. Let me say something funny to make us comfortable. 

[Apparently people-pleasing is a maladaptive coping mechanism. But my superiors in the workplace really like it when I am consistently pleasant and do what they want. People in positions of power do not express concern for my needs, my differences, or my emotions. Those things get in the way. 

I would like to say that I believe I am smart and capable as others tell me. That I am up to the challenge. That I will continue to be up to the challenge. (Am I being unclear? The challenge of living in the world.) There is a steel thread in me that I was born with. It's thin but strong. It grew with me in early childhood, when I learned the pattern of being absolutely terrified, all the time, and having to act anyway. Act: do, move my limbs, move in the world, think, react, be capable, don't let them see how weak and afraid I really am, achieve, achieve, achieve. As I grew into a young adult, I built a core around the thread--a core of self, not just survival. Creative acts saved my life. Art and writing saved my life. As I grew into a woman, teaching helped me locate myself deeply as a giver and a guide.

I thought my childhood and teenage years would be the worst thing that would ever happen to me. By far. No close seconds. But then my mom suicided (three years ago Sept 21) and that perspective changed. I can't know what's ahead. I can't worry enough do enough rituals enough compulsions pile on enough covers to protect me from the future. << It's been three years and I'm still like this.

I heard somewhere it's National Suicide Prevention Month. 

The reason I'm putting this on my blog instead of deleting it is to say fuck you to mental illness. To stigma and judgement and appearances and people-pleasing and the bottom line. I am alive. Sometimes completely; today barely. But I am alive. 

I wish it genuinely felt like enough to celebrate being alive.

When someone with mental illness or a disability says fuck you stigma, there is a rallying cry from allies. Oh yes. Fuck you stigma. We should be more open about these things as a society. But only in the most abstract ways. When it comes to the practical details. Well. That's tricky. No one wants to really deal with that.

*

I don't know if I'm re-starting this blog or not, for real, or if this entry is just a one-time deal. But I do know that I began the blog with this theory of RADICAL OPENNESS (fuck you stigma). I began this blog not even imagining what was in the future for me. And somehow I'm still here. Straining my neck. Chin bobbing just above the surface.

Here's a video. I'm teaching a class pretty soon and I want to do a section on sublimating trauma through poetry. I found this amazing talk and poem by Rachel McKibbens. It allowed me raw access my emotions, for once. It gave me permission to write this. I churned out work like a demon yesterday. I don't know if I am capable of doing any work today, but...I listened to her talk and it gave me permission to write this, at least.

Donne said that no man is an island

Recently a friend wrote this sentence in an email to me: "I used to be a HUGE oversharer before social media was a thing." I thought about social media. Lots of people just put up pictures of their vacations / parties / marriages / children at their finest moments and call it a day. I actually know of numerous people who have deactivated their Facebook accounts b/c the competition got to be too much. They feel like everyone else is saying, I have the best vacation, the best husband/wife, the best baby. With the implication of, and you don't. I got the feeling that this friend who emailed me feels like sharing their life, in all of its dimensions, is frowned upon.

I have a problem with the term "oversharing." Also, the word "needy." "Oversharing" assumes that no one wants to hear your personal stuff, that it's impolite or socially wrong to share your personal stuff, that we should all walk around projecting only positivity and the more shallower dimensions of our lives.

Everything looks shiny; no one allegedly has to feel anything except YAY YAY YAY.

When really, I think it's a continuum. At my old job, I sure as hell would not share personal things with certain people. Especially administration. Most jobs are like that. But I think it's okay to share things with people who are your friends or close colleagues. Because what the heck are friends for if you can't be there for each other during the positive *and* negative times?

My friends are some of the best people ever because they have listened empathetically to me and really been there for me, especially over the past year-and-some-months, when things happened with my mom. Or they have distracted me with wonderful things like coffee and Indian food and visits and children and simply the beauty of their presence. I never feel judged by them. And I in turn feel special and honored when they come to me with important emotional things. Like: wow, they trusted me enough to ask me to listen. I feel capable and strong when I can support them.

The word "needy"gets kicked around a lot, just like "over-sharing." "Needy" pathologizes the idea of interdependence. As a culture, we live under this delusion of self-sufficiency, like that's the ultimate thing to strive for. It's very American. Or United-States-ian, I should say. But when you dissect it, the idea of INdependence is fundamentally impossible unless you decide to become a hermit on top of a mountain. And then what happens if you break your leg or need to go into town for food?

Each in their various ways, my mom and dad raised me to believe that self-sufficiency was the ideal. In  reality, they were not self-sufficient, but I was raised to believe that I should strive to be. I think they thought they were doing me a service. This created a schism in my thinking which still continues. On one hand, I feel the old emotional pull: do it yourself at all costs. Appear strong at all costs. If you can't, that's bad. Other people will take advantage of you OR You're weak. Incapable. Less-than-adequate. 

On the other hand, I know my reality, and I try really hard not to judge myself for it. Ahem, I'm not saying I succeed in being nonjudgmental, but I try. Yeah, sometimes I need. Everybody needs. And sometimes I NEED. And everyone in their life goes through a period of that NEED too, whether they admit it or not.

I think about need, and sharing, and interdependence also as it applies to teaching. I think about it a LOT. When I went through teacher training in grad school (ages ago… yikes!) I was taught that students are people, that learning is collaborative (students learn from the teacher, students learn from each other, the teacher learns from the students), that each student will have a different learning style, that it's okay to be honest with your students when you don't know the answer, that it's okay to be vulnerable and to expect (and accept) your students' vulnerabilities.

Then… I taught at a certain place for awhile and it really made an impression on me. The culture was rather the opposite of the way I'd learned to teach. Not necessarily through word but through example, the ideal classroom was presented as: the teacher makes the rules, the students follow the rules, the students get punished if they don't follow the rules, each student is an information bucket into which you deposit key skills, and then they somehow translate those skills into a well- or poorly- written paper and then you grade them. Nobody needs to be feeling their feelings all over the place b/c there's no room for that in the syllabus.

I really tried to be that latter teacher and I did not do well being that teacher, and it burned me out. I had colleagues who taught at that place, and still do, who somehow managed to be a combination of the former teacher and the latter teacher. Or colleagues who were so untouchable (some concept called tenure of which I know not) that they could be the former teacher and the administration could go… fly a kite.

If anywhere I thought I could succeed as the former type of teacher, it would be in the teaching of writing. Whether you are writing poetry or a thesis-based argument, the idea of empathy is important. The ability to accept  and not vilify emotions is important.

Now that I'm feeling a lot better, I'm going to start revising / submitting my own work again in January. I'm also thinking about teaching (as a concept), because I really miss it. But, especially given my geographic limitations, I don't know where the right place is for me, if any.

Water and No Water

When I was a kid living in rural eastern PA, we had a well. As a child, I didn't really understand the mechanism of the well, just that it was underground and through a series of pumps and pipes, provided all the water for our house. I think it may have also required electricity to run. Which means that when the power went out, so did the water. 

I remember the feeling of panic that took hold of me whenever the power went out or there was a mechanical problem with the well. The panic was connected to the sudden scarcity of something I took for granted. Bear in mind too, that for someone with OCD--which I've had it since I can remember--it's important to keep clean. No water for going to the toilet, no water for washing hands, no water for taking a shower. Frightening brown sediment would rise up into the toilets and sometimes the sinks. I didn't know when the water would come back on, only that the forces were completely beyond my control. 

I can hear Joanna-therapy-voice interject here: sometimes a child is just born sensitive.

One time I remember my panic was overwhelming, and my mom tried to distract me by reading a book about horses together. A love of horses was one thing we had in common. This book had all different breeds of horses in it, their historical origins and the countries they came from accompanied with fantastic illustrations. I remember Lipizzan horses capable of astounding grace, stocky Clydesdales, tall and rangy Tennessee Walking Horses, Arabians with their unusual concave faces... although the panic never went away,  the stories slowly replaced it in the forefront of my mind.

[I wonder what my parents thought about my panic. I wasn't diagnosed with OCD until I was 18 and certainly neither of my parents knew what it was before then. What did they think of my strange tics and ongoing anxieties that rarely seemed to ease up?]

* * * 

This morning when I was in the shower, suddenly the hot water cut out and there was just this unmitigated torrent of cold water sluicing down on me. This can happen in apartment living of course... one just has to shimmy to a corner of the tub that is mostly out of the shower stream and wait it out... but this torrent went on and on... finally I dove in and turned off the water entirely. I turned just the hot spigot back on. Nothing. Somewhere a pipe knocked dully. 

Perhaps in response to my stream of compound-complex swear words, Mike asked if I was okay. I imagined the cold shower causing all my muscles to seize up and the fibro ache lasting the whole day. I requested a washcloth so that I could rinse off from the tub faucet and not the shower. 

When I turned the cold water spigot back on though, there was no water coming out of there either. More distant knocking of pipes. I had the feeling there was no water anywhere nearby, although Mike said there was still some coming out of the kitchen sink--probably what was left in the lines. He brought me a bowl of water.

We called the management office and they said that maintenance had to shut off the water for "an emergency repair downstairs" and they didn't know when it would be back on.

* * * 

No Water changed The Plan. 

Regarding The Plan: have I mentioned my recent strategy to tamp down my constant panic with structure? I visualize each of my days as a box. Each day has A Plan. As The Plan is executed, I picture little colored strata start to fill the box. At the end of the day I have made it through. The box is filled. 

Where did I get this visual? I think there was a video game in the eighties involving colored lines slowly filling in or draining out. If anyone knows, leave it in the comments. 

So I have this strategy, but I'm not great with changes in The Plan. For today, The Plan was housecleaning in the morning, vacuuming, washing and wiping, doing the catboxes, in the meantime having loads of laundry going on the second floor. Additionally, I told myself had to rock today's Plan, because I was practically useless yesterday: semi-functional in the morning but in the afternoon and evening, tearful and trapped in a pit of self-judgment.

Last night in the middle of hysterical sobbing I thought look at my fucking life now --my mother did this to me. One last strike so we could both go down together. These thoughts are pretty close to my worst thoughts: the fear spiral that leads to places too dark to blog about.

How strange that she could be so kind one day, so unmerciful another. I mean it: how strange. I thought it was strange at eight. At thirty-eight my mind still can't get around it.

I think of that eight year old girl, vulnerable and not in control of her world, trying to provide structure with rituals, which came along with horrible tics. Today, I lost my shit when the water went off. 


* * *

When I taught at University, I shepherded my students through a campus lockdown because there was a shooter on the grounds. There were three incidences of gun crime at this school during the six years I taught there. This never kept me from going to work. 

If you would have asked me, I'd have said yes, it's scary, but there's nothing I can do about it. The people who are in charge of doing something about it are doing something about it.

Fast forward 2.5 years and I'm totally couchlocked, blogging about waters and wells and horses and my child-self because I can't even execute PART of today's Plan. See, it has to go a Certain Way, follow a certain procedure and it can't with no water and... and... I feel like eight-year-old-me.

All I can do is deep-breathe and say it's scary, but there's nothing I can do about it. The people who are in charge of doing something about it are doing something about it. But I can't get off the couch.

20things : Alterations

20things : Alterations

1) Yesterday and all week I have been overfilled with anxiety of transition. We have done so much. We have so much to do.
2) When Mike came home he asked if there was anything he could do to help and I suggested a walk.
3) So we walked to Frick Park, which is very close now, which I haven't been to in years&years&years.
4) As soon as we got there I got this "opening" feeling.
5) Like, I wasn't Feeling Better, but I could see the concept of feeling-better out there in the universe, waiting for me to find and retrieve it.
6) Like maybe all the weight of Since August could potentially be lifted, not right now, but eventually. 
7) It's the first time Since August I've felt this.
8) So that happened. Hence, more walks in my future.
9) This morning I took in a dress.
10) I'm one of those "pear" shaped women, smaller at the shoulders than the hips. 
11) I've accumulated three really pretty summer dresses with wide straps that fall off my shoulders. 
12) It was either fix the dresses or donate them; I've been putting it off since last fall.
13) I was worried that Luna would immediately be hunting the needle and thread as soon as she figured out I would be engaged in a task that involved slow, intriguing, repetitive movement, carefulness, and of course sharp objects.
14) Thankfully she didn't figure it out until the second shoulder.
15) By then I was halfway done so I was able to stay more or less patient.
16) Did I mention I'm thoroughly mediocre at sewing? 
17) It's not my favorite task. I nearly failed home-ec because of a teacher who chose to treat me like a dummy in front of the whole class b/c I'm visually impaired.
18) Everything I learned about sewing came from a very patient art teacher and a room mate who majored in fashion design, neither of whom assumed that because I'm mostly blind I couldn't sew.
19) Still, I've never actually taken in the straps of a dress before, just imagined what it would be like to do it.
20) And now my purple butterfly dress, which I'd bought to wear for a big SIT presentation two years ago, fits like the straps will stay on my shoulders and not start that embarrassing slide down my arms.

I think I will wear my "new" dress today.

20things : moving / seven years / and

1) All winter my cheeks were windlashed and wet.
2) After this winter I determined I no longer look good w/o makeup.
3) My face has these red flaky areas over my cheekbones. And lots of bumps and blemishes all over.
4) Also I've cried more in the past winter months than I did in seven years previous.
5) The other day I snapped the first buds of magnolia.
6) The picture reminded me of Spain, a raw almond, green and furred, still on the tree; another photo, over half a life ago.
7) I keep running aground on history.
8) It cracks me open every time.
9) I sink further.
10) One night, when I was young enough to barely remember, I cried into the rectangle of orange light that separated my bedroom from the rest of the house, where after dark I knew I couldn't leave.
11) I cried until someone came for me.
12) Sometimes they did not; that night, they did.
13) We were going on vacation in a few days --my first one.
14) I needed to know if the bed would be the same, if the sky would be the same, if I would be the same, were I in another place.
15) The answer was I don't know.
16) That was my mother.
17) That was my mother.
18) And I am again in another place, and the bed is not the same, and the sky is not the same, and I am not the same, and it is still almost too hard to hold onto, like in my childbrain.
19) I hear the present approaching the future, rushing faster and faster toward me. 
20) A train and I am trapped underneath the tracks.

Talking to the blind eye

So I wrote this poem based on three things:

1) I was charmed at AWP by a panel called something like Readings and Performances in Digital Media which featured, among other things, a guy who wrote perl scripts to generate poems within certain parameters. When he read them it was a cascade of language that generated a pleasant emotional heat.
2) A conversation with a friend, at the end of which we made it our goal for the week to talk to our injured parts.
3) Anagram divination.

***


Talking to the Blind Eye

A lithe gilt knot. 
Bed yen.

Gal knit to debt, 
heel, 
yin.

Bind heel, yet talk gin to.

Taking blithe, 
needy lot.

Tiny ink 
to bleed the lag.

A picture of the eye that is completely blind. As you can tell, I wear my hair over it. This is because I'm self-conscious about how it has a will of its own and stares off into nowhere.

Leaving for Boston in a Snowstorm and I remember

When I was 13 walking through the woods with a friend. She dodged all the bare branches that stretched from the thin tree trunks and blocked our path. I wanted to move as fast as she did, but the snow-covered terrain hid rocks, sticks, sliding things. Trying to catch up, I kept falling. I couldn't see the branches so I pushed them away angrily. She said don't push them away; they'll push back. Go around them instead. The branches whiplashed into my face, already wet with cold and shame. I didn't listen to her. I batted at them from the edges of my non-vision. I ate my anger as branch after branch stung my cheeks.

The trees outside my back porch this morning.

There's a splinter in your eye and it reads react (R-E-A-C-T)

Haaaaay internet bitchez what up?

Okay, I tried being casual just there (which I mistyped causal) but I like you. And I'm not casual with people I really like; I'm serious. 

I've got this serious dilemma. 

You may have already been caught up with my life to date, or at least the one I share in blogland, but if you're not, maybe you should read back a few entries until you are caught up... if you want to help me make this choice. If not, fuck it. Keep reading voyeur. I know you're there.

This house here that I'm sitting in right now is a safe place because Pam says it is. I think stepmom Pam may have been created from part-goddess parts.

Then there is my dad who, when I said, pre-morning-coffee: Gee I'm sorry I slept so late; I was up all night worried about my kitty cat.... responded with YOU KNOW I FEEL A CERTAIN WAY ABOUT PETS SOME PEOPLE MAY THINK IT'S HEARTLESS OR CRUEL BUT YOU REALLY HAVE TO LOVE THEM IN THE MOMENT AND THEN WHEN THEY DIE OR RUN AWAY YOU NEED TO JUST REPLACE THEM AND LIVE IN THE MOMENT YOU CAN FORM THE SAME LOVING BOND WITH ANOTHER PET SOME PEOPLE MAY SAY THIS IS CRUEL BUT FOR EXAMPLE [..... minutes pass ......] YOUR MOM AND THAT DOG OF HERS WERE REALLY CODEPENDENT TO THE POINT WHERE IT JUST WASN'T A NORMAL SCENARIO dad you know mom herself isn't a normal scenario BUT WHAT I'M SAYING IS IT WAS UNHEALTHY NOW INSTEAD YOU SHOULD..... 

My dad actually talks like that. His default unit of communication is The Lecture. It lasts from 5-10 minutes. I have gotten good over the past few days at not giving a crap. Or rather at fake giving a crap. This is different from when I was growing up. Then I really gave a crap about everything that came out of his mouth because he was my dad. And I was raised to do so. Ditto mom. She really isn't a normal scenario. I don't mind faking it. I love him. He's my dad. I love mom too. They did some pretty stupid things back in the day, but I love them. Pam has semi-reformed my dad. My dad is driving me to Pittsburgh for a thing. He's good. We just don't see the same on a lot of stuff. Mom is still doing stupid things. But I love her anyway. Yes, I'm being vague here. The stupid things they did aren't really relevant to this post. 

Anyway dad in this particular cat lecture kept rolling on like a 18-wheeler that's lost it's brakes and is on a slight slope downward. When I was younger I would have freaked the fuck out that he was talking about my cat that way, because I depended on my dad to understand me. Now I'm 37, I have a load of friends that I pretty much consider my extended family, and also did I mention, right now I'm on lots of medication. So I was like in my head: hm dad, fuck fuckityfucknuts where is the coffee.... 

But it takes little pieces of me away, whenever I have to fake it. My dad says ridiculous things all the time. I mean reeeeeee DICK ulous. His views on gun control and immigration are... ahem, they do not match mine. And without Pam there, he feels free to expound even if I ask him not to. Because he speaks in the all-caps voice, and I speak in the regular typeface with lots of dashes and interruptions-of-myself / or / slashes / like this / voice. 

If dad were the only thing getting under my skin (HA I made a joke there b/c my skin was all scabby before my dad got under it), this trip would not be making me so crazy. But there's one more leeeeettle straw that is breaking my back.

Back, back, back in the day I used to live here. In this town. And when I wasn't living here, I was living about 15 minutes south.

Some crimes were perpetrated against me by a certain man. Not a relative.

And this town holds all these memories that I didn't even realize would come up when I was by myself, under a fair amount of stress.

I thought this afternoon hm this could be a clue as to why I don't visit here that often.

I feel like to go outside I should dress up in a floofy head scarf and big sunglasses (sunglasses, check). Like Jackie Kennedy.

I don't believe this person, this man, is living here anymore.

But when you have, for example.... say you have a really ugly dresser. 

I have a really ugly dresser.

Say it was bought for you by your dad who has very masculine taste in furniture when you moved into his bachelor apartment when you were 17 because mom was not a normal scenario.

It was bought for me by my dad..... 

and I was looking at it when... this man... not a relative... was perpetrating crimes against me. Not crime, crimes. Repeatedly for several years.

This dresser is still in the room where I'm staying now. This dresser has followed me through 1, 2, 3 yes I believe it's three homes in the Allentown-Bethlehem area. 

And it's not the only scenery that surprise-haunts me.

My dad and I were doing some errands today in the car. Vroom, drivey-drive. You don't walk anywhere around here because you drive. Dad likes to drive. He likes to drive scenic routes sometimes. Todays scenic route, featuring some of the best scenery of Allentown-- it is seriously nice scenery --took me past several places where I remember the details of certain crimes. 

Last night, before this all even happened, I dreamt about him. The man. I dream about him in Pittsburgh sometimes too. But not very often. And when I dream about him in my own house, I wake to my life, my independence, my I-can-leave-if-I-want.

So I'm thinking about coming home. My dad already agreed to drive me back to Pittsburgh and back in a few weeks to do an important poetry thing. Nobody besides my dad and Pam (and Jenn?) know about this because it's been all Ravi Ravi Ravi where the fuck is Ravi. But I could just not go back with him. I would stay a week at home and then come back with Mike for the shore trip at the end of that week. 

But I am worried about incurring the, I won't say wrath, because my dad doesn't do wrath anymore... incurring the pissed-off of my dad.

*     *     *

I can't take this shit anymore. I'm going to list the shit now, just to recap.

1) We got fleas.
2) My OCD, the fleas, and the extreme heat of August interacted very badly, creating lots of scabby wounds all over me which I imagine are all flea bites, but which, in fact, are most likely not all flea bites.
3) I retreated to my parents' villa in sunny A-town which is well-appointed, cold as a fridge, and has stepgoddess Pam.
4) Back in Pittsburgh one of our cats vanished.
5) My husband starts freaking out and we are apart. I mean he is being really productive and amazing, but he is still hurting too.
6) I start freaking out here but in a slower, more protracted manner, including varied and sundry elements of PTSD badness, remembering crimes, etc.
7) if I go home, I will have to face the reality of my gone-cat-gone, and the imaginary but sort-of-real fleas.
8) if I stay here I will have to deal with the PTSD and to a much lesser extent my dad.
9) Either way I have at least another week of here. Which has goods and bads that even out. If you look at it as T = 7 days.

Am I still making sense bloggerinos? Help me make this choice? Deliver me some insight? 

Foreign exchange

I've been thinking about a particular disability trope which has always bothered me:  Person X may have a disability, but they're just like everyone else. They're no different from you and me. I really loathe that. You hear it from, say, movie producers or PR people who want to cash in on the inspirational-overcoming version of the disabled character. Sometimes you will also (even) hear it from a person with a disability, said about him or herself. 

The thing that bothers me about this statement is it's falsely reassuring, gooey-sentimental, and just not true. But... I think I get it now. 

I mean, I'm not suddenly in favor of this wording. But I think it's badly executed shorthand for: although I have a thing with my mind or body which may be initially offputting to you, person who lives in the land of Normal, you should examine that opinion. This disability, though it comprises part of my character, does not exclude me from also possessing character traits that you, Normate, can identify with. Maybe we can have coffee or something. Even though we are from different countries, let's have an exchange. 

This trope is on my mind because I'm here today to blog about OCD. It's not my favorite topic. I want to keep my mouth (hands?) shut. But I haven't been blogging a lot recently, and although my pageviews are way down for August, I'm assuming some of you might still be reading and maybe wondering what's up with me. What's up is OCD badness.

I've been having a cumulative amount of stress through late July / early August, none of which I can write specifics about. I'm hesitant to include the personal details of my friends and family in the blog. The biggest stressor is a family thing that I don't want to talk about in the great open space that is the internet. 

Setting that stress-ball aside for a moment... know, reader that I've had OCD --the serious full blown after-school-special with tics and checking and counting and weirdness-- ever since I was small. Somewhere between age 4 and 6, I started noticing the rituals. Of course, I didn't know they were rituals at the time. Although my rituals were quite overt, I wasn't diagnosed until I was 17 or 18. 

I still wonder about the late diagnosis. Some possibilities: unmedicated OCD can relapse and remit. A few bad months, then one good. Some tics were obvious but some were secret. My parents didn't want to / understand / have the time to deal with this strange behavior. I was always strange. I was born strange, and this was another manifestation of my strangeness. When your marriage is falling apart in vivid and messy detail, it's more concrete and more compelling than your kid doing a weird thing. 

So after the diagnosis there was medication: first Zoloft, then Luvox, then back to Zoloft, then another brief flirtation with Luvox which suddenly started giving me heartburn and I would have to give up my BELOVED coffee and fuck that, so back to Zoloft, and finally onto Cymbalta, which covers both my OCD and the nerve pain of my fibro. It really covers my OCD... better than the Zoloft did. About as well as the Luvox, without the heartburn. 

I'm interested in my hesitation to tell you about the OCD. I've already revealed the blindness, the fibro, the PTSD. And I believe disability is my country, my political party, my crew, my crowd, my proud-to-be. So why the coyness about OCD? I feel like it's worse somehow, comes with a stigma.

Idealized OCD, on tv for example, is often portrayed as comic relief. Or OCD gives you supergenius powers of observation. 

But when one considers the reality, it's more particular, more individualized, far less glamorous. 

I have heard lots of people say "oh I have a touch of OCD," when what they mean is, "I like to alphabetize my books" or "I get finicky when my collectable figurines are out of alignment in the curio cabinet." 

It's not the same as the all-out counting-checking-ticcing-can't-help-it variety that I speak of now, that I hesitate to speak of.

Wikipedia, prized source for all my students' "research," says:

Obsessive-compulsive disorder (OCD) is an anxiety disorder characterized by intrusive thoughts that produce uneasiness, apprehension, fear, or worry, by repetitive behaviors aimed at reducing the associated anxiety, or by a combination of such obsessions and compulsions....[Symptoms] can be alienating and time consuming, and often cause severe emotional distress. The acts of those who have OCD may appear paranoid and potentially psychotic. However OCD sufferers generally recognize their obsessions and compulsions as irrational, and may become further distressed by this realization....Roughly one third to one half of adults with OCD report a childhood onset of this disorder, suggesting the continuum of anxiety disorders across the life span.  

OCD is my brain's favorite torture device. It's there with pinchy calipers to pull and poke at my rationality, ubiquitously. It makes my thoughts race. You really wouldn't know it to observe me though, unless you lived with me and caught me doing a series of tics. 

The medication aids in a popular coping mechanism of "saving" the tics for an appropriate time to discharge them, i.e. not in public. 

So the OCD was exacerbated by the cumulative stress-ball rolling itself bigger and bigger since late July. 

August is inflammation, fire, anxiety. August two years ago was when I got the shingles. I once wrote a poem about August called "Disorder, Not Otherwise Specified." It's in my chapbook, Borrowed Bodies.

The seed of my annual August (Augustine? Augustian?) stress usually is familial on the maternal side. Mom stuff, to put it simply. This year my mom stress is unbloggable. I don't feel comfortable revealing her personal details which also trickle down to be mine. Maybe that there is part of my problem. N has said quite a few times that I need to mentally "let go" of "fixing" my mother. 

So. if Mom stuff is the seed to my stress-ball, then fleas are its outer coating. <-- Ew.

Our cats have contracted fleas. They don't go outside much, hardly ever really. But Ravi may have picked them up from his porch time. Or a human, including the humans he lives with, may have brought Flea Zero in on clothing or bags. Or Flea Zero just hopped through the hole in the screen one day. 

We've had fleas before, but never this bad. Admittedly, we don't use Frontline (or its competitors) all year round. I just have this "less medicine is best" attitude and it's cold most of the year really isn't it? and cats are so squirmy and I'm always fretting that I'm doing it wrong because am I really parting the hair at the shoulder blades and getting the product DOWN TO THE SKIN? If I don't get it DOWN TO THE SKIN I'll have done it wrong and omg, fretting ensues.

Bugs squick me. Biting and stinging bugs. Fleas bite. I"m not sure fleas have ever bitten me before now, before this August. But they've since attacked my ankles, my knees, the tops of my feet. My skin is extra sensitive to bug bites. They swell, get really red, itch like a motherfucker. I've scratched my ankles raw from these bites. 

So the stress had been mounting and I just didn't intuit where it was all headed. Bugs. Fleas. August. OCD.

Being an intellectualizer, I tried to sublimate my flea stress by doing research on the internet; always a good idea! Internet research did nothing except to amp up my obsession. Basically the conclusion I came to was a) they're nearly invisible to me b) they can live EVERYWHERE in my house in the absolute smallest places where I couldn't even conceive of before reading the horrible horrible internet c) they can lie in wait in egg sacks d) the Frontline alone won't fix it; we have to vacuum EVERYTHING EVERY DAY. All soft surfaces.

d) is practically a quote. 

So after amping up my obsession with internet research, I was petting Ruskin and saw two fleas on him. One was maybe dead? And one was moving... I saw it. Go in. Burrow. Into his fur. 

I SAW THE FLEA GO IN TO MY CAT. And then I lost my shit completely. 

Mike found me at home in the middle of the day, absolutely hysterical, unable to exit the shower. I was fixated on two objects, each about the size of an individual coffee ground, dark against the porcelain tub. It seemed as if they had come from my hair. 

Water running over me continuously seemed the only tenable state. 

I was like, in control of my body, but not. Words came out of my mouth...

We stayed in a hotel for a few days last week. For me. So that I could re-gain my sanity. My therapist was on vacation. I called her (she'd said I could) and we communicated about this issue. 

There's a new med, for the short term. 

Two days ago we came home. I was good for the first day and now bad again. Not hiding-in-the-shower bad. But... home is not a good place for me right now. 

I'm going to visit my folks for a few weeks. Their house is very clean. VERY clean. They have no pets. They have wifi and serious a/c to calm all my heat-related skin-flamation. And they are my parents, my dad-and-Pam who I haven't spent nearly enough time with in the past years. 

I look forward to many kitchen-table conversations. Now that I am older I can appreciate my family more, as individuals. Hopefully I'll get to see some of my extended stepfamily while I'm there. My nieces, with whom I've missed a lot of their growing up.

[........]

I brought up the trope, the "... and I'm just like everyone else" thing because I like to deconstruct these concepts but also, paradoxically, I find the need to say it to you now, when I haven't before. Like I have OCD but really I'm just like you. Even though it's a stupid thing to say. It's like I'm pleading. I have lovable characteristics you may recognize in yourself. 

How many diagnoses have I revealed in this blog? Not as many as I have. There's a need to say I'm not the sum of them. Mike says it's because you're an intellectual. Disabilities of the mind are more entangled with your self image. 

Maybe that's why I'm embarrassed. I feel the lack of control more acutely, when it happens. 

But also, you should know. I love the ocean, painting my toenails, eating cake for dinner. I subscribe to the NYT crosswords app for my iPhone, even though it's $20 / year. I sing to my cats. I do jigsaw puzzles. I grow cacti in my front window. A poem from my MS was just accepted by RHINO. 

And I always know where my stuff is, keys, wallet, phone, purse, coat. Because each item goes back in exactly the same place I got it from. 

Wild gratitude

So I just want to say thank you, although those words are inadequate for how much your friendship means to me. Especially those of you who have sent me such warm fb messages of late, and keep coming out for readings no matter how cramped the venue :) 


The Hem's reading on Tuesday, I was expecting it to be sort of meh. I was definitely having an off day; stress / anger were eating me; I was totally scattered and cerebral and just not feeling it. 


[the ambient temperature of my work area here, off the living room, has got to be over 80 degrees, so forgive me if this starts to sound loopy]


But you know? Hem's turned out to feel sort of transcendent. I don't know if it was the act of reading these particular poems or the audience's reception --it was all new stuff and vulnerable material, most of it revised with no outside input) --but I'm still feeling buoyant. [Like maybe I'm okay just as I am.] Joan made a recording for me, which was fabulous... I'll share it as soon as I figure out how to chop it up into individual poems.


I love the end of this poem "Wild Gratitude" by Edward Hirsch. Here's a link to the whole thing. But these lines...

"...teach us how to praise—purring 
In their own language, 
Wreathing themselves in the living fire."

There was a person at that reading who asked me after, in tones that sort of implied he was pretty confident of the answer, "Are you a Christian?" I was like, "Nope." He said, "Are you sure?" I was like, "Pretty sure..." He seemed to want something so I shrugged and said, "I was raised Catholic but now I'm ..." "You're what?" "Severely lapsed." I was really hoping that he wasn't going to ask me to accept Jesus as my personal savior or anything, but the conversation did not go in that direction.


Bad things were done to me in the name of religion. And I'm pretty over it... sort of... but I get tense when people try to pin me down on what I believe. But praise as a kind of purr... I can feel that.

I think sometimes I get so wrapped up in my head that I forget how to praise. And by praise I mean give profound thanks. To readers of the blog who pop up out of the ether. To friends who buy me dessert for dinner. To Mike who "fixed" my text-to-speech problem by tweaking a deeply-buried setting. To a soon-to-be teaching colleague who did not make me feel hideous [or should I say confirm my already-in-place feeling of hideousness] when I asked for help. It feels good to be so grateful. Almost like purring.

To reiterate: 

I asked for help from a person I have not yet met [read: stranger], who doesn't know me, and I got acceptance instead of rejection. I'm writing it down here so that I can attempt to cement this lesson in my mind. I know it will fall out soon enough but maybe I can get a few more days of that interesting hopeful feeling.

Fear is the ghost of pain.

Mike recently sent me a link to an essay by Mary Ruefle appearing in the June 2012 issue of Poetry called "On Fear." In this essay Ruefle explores the nature of fear, first by giving a personal anecdote, then an observed anecdote, then establishing a definition for fear, then putting her own thoughts in conversation with many sources --everything from the CIA's Exploitation Training Manual to a pilot, an ER doctor, and a poem by Wallace Stevens. After she probes Keats's "negative capability" and sort of refutes its goodness, its necessity, she comes up with this idea of a sort of "positive capability" that fear gives us, to impel us forward in our creative work. In her closing paragraph, she confesses, "I am much less afraid than I ever was in my youth. . . . At the same time, I feel more afraid than ever. And the two, i can assure you, are not opposed but inextricably linked." 

Yes, I completely rushed through summing up this essay for you, because I'm impatient and it inspired me. Her idea of navigating fear as a young person vs. fear as an adult brings to mind this song I once loved called "Kid Fears." The Indigo Girls wrote it with Michael Stipe doing a guest vocal. There's one particular lyric: "Secret staircase, running high, / You had a hiding place. / Secret staircase, running low, / But they all know now you're inside." The entire song is pretty abstract, but this lyric strikes me. It reminds me of the game you play when you're small and hide your head under a blanket... the idea being, "if I can't see you I must be invisible." When you are young, you have a secret path to invisibility from the predators. As an adult "they all know now you're inside..." You are stripped of the gift of innocence. You know the predators can see you. Perhaps they've seen you all along.

As a child, my secret path to invisibility was my imagination. I couldn't quite play like the other kids, although I tried. I preferred to spend my time alone though, in a world of my own creation. Some of my fears were "kid fears," monsters in the closet, under the bed, but others were actual fears. These other fears still resonate in me. Some of them still possess me. Being hit. Being touched. Being deserted or lost. Falling. Falling.

Falling was the big one; still is. I hurt myself a lot as a child, though thankfully only once broke bones. And I still hurt myself. Although heart disease runs in my family, I'm pretty sure I'm gonna go from a bizarre home accident or the complications of same.

I can see: things that are a) not moving or b) moving slowly and c) where I expect them to be in space. 

My kid-body wanted to go at 95 mph and my brain and eyes could not keep up. I was raised, not explicitly but more implicitly, not to cry about my bloodied bits. I was raised to be normal and falling so much was definitely not normal. As I grew older, I remember "shaking it off" many times so that other kids would not pay me any mind, and also being shocked and a little embarrassed for one of my friends, for example, when she slipped on a patch of slick grass in the yard and hit her head. I felt awkward because she was screaming as if someone was stabbing her, and we were nearly teenagers. By that point, I had learned to shut it. 

I'm not saying this was healthy. In fact, all those emotions had to go somewhere, and I think they went into my body. What does that mean? Well, I have fibromyalgia. It has to do with neurotransmitters for pain that won't shut off, even when pain is not present. Or they turn the pain up to 11 when really it's only a 4. As if one can really be objective about a quantity of pain... but you get the idea. 

One of the lines in Ruefle's essay that stuck out to me was toward the beginning. It's basically her quoting Tony Hoagland quoting Auden, but the gist is, "fear is the ghost of pain." I fear the basement stairs because I have fallen down them before. I fear the appearance of that particular belt because I have been hit with it before. 

I have always felt this way about falling. One could almost say, "I fear walking because walking is basically lifting your feet and catching yourself before you fall, and I'm not so good at that." Of course I don't fear walking! But ... I have chronically stiff and knotted muscles. It has been observed by ahem, professionals and also (annoyance!) by my mother that I am "very tense when I travel." Travel, meaning ambulate. Only in the past year or two working with A have I begun to recognize and consciously attempt to reduce the tension. Using the white cane again has helped mitigate the tension somewhat. It feels the ground for me and also provides another point of balance because it's a third contact with the pavement. 

It has helped mitigate the tension, but it doesn't undo thirty something years of tension. Fear is the ghost of pain.

I have this new job I'm starting. I've been chasing it for a long time and I'm so glad I got it. It's not very glamorous but it will involve teaching creative writing again. The only thing is... as the start date approaches, one communication snafu or another has prevented me from receiving vital information such as the room or even the floor(s) where I'll be. The building I will be working in is ... kind of revered by those in the city. You might even say it's a site of tourism. The architecture is grand and gothic. It has many entrances and winding stairwells. All of which, to me, look the same. 

My friend K says that communication issues like this happen more frequently than I think. She said me the other day, "Did I ever tell you about my very first day of teaching? I went to [the school] and asked for a schedule. Well, they didn't have one. I asked which classroom was mine. They didn't have that for me either." 

Buildings that are triumphs of grand or modern or atmospheric architecture are usually not triumphs for me. I remember my first day of teaching at a particular university. One of the eateries was designed to look like a pub. Big booths, dark wood. I fell down a short (as in three steps) flight of stairs and hit my head on the floor. And humiliated myself of course, in front of the lunchtime crowd.

Time is ticking away, and I really want my room assignment(s). 

 I can get lost in a bathroom if it's big enough. A BATHROOM. It's embarrassing. I have t to do routes many times before I get them down to where I am comfortable. I don't move casually from room to room, floor to floor, building to building, but I work very hard to make it seem like I do to other people. 

The ghost of pain. Getting lost in a bathroom. Maybe it's a restaurant bathroom with dim lighting because it was trying to be all fancy and cavernous and atmospheric. Or having to pee so badly but knowing I will not be able to locate the rest room before it's time for my next class. 

If I get the opportunity to do a dry run on Friday, of my new workspace, I will literally be writing down or voice-memoing exactly where I went in, exactly what left / right / straight paths I take, which stairwells, etc. Because when I go back on Monday it will be almost as if I hadn't visited on Friday.  Honestly, I would have liked a month of preparation time instead of a day.

My fear has caused me to really consider just dropping out of the new job before I have it. This job that I have wanted and striven for, for a year. Part of me really wants to be like, "no. I give up. This communication situation is beyond my ability to tolerate, and it's going to fuck with me physically." 

I am bad at speaking up. At asking for help. Because then I will be a liability instead of an asset. I need h. What's that? I need hhhhe----. Pardon? I need help! So shut up and fuck off. I'm working on it. But breaking these constructs down is like approaching a brick mansion with an axe. 

The ghost of pain. Looking incompetent as a teacher when I walk into the wrong room, into walls, into desks, into children. The kids don't see how hard I work just to maintain. Sometimes the cracks in my facade are very deep indeed. About a month or so into my job at the same university with the pub-cafeteria, I tore some ligaments in my knee. From stepping into a pothole as I was getting off the bus. Fall number 16,250. And then I walked up the giant hill to my school because I was trying to "shake it off." 

Anyway, they put me in one of those rehab leg braces where you can lock and unlock the knee of it. My knee-thing was locked. I nicknamed my leg "baby redwood" because that's what it felt like. I felt like a relatively small person carrying around a tree as big as I was. I used a cane (the standard kind, not white) to walk, except I didn't use it 100% of the time in the classroom. One day I had sort of casually hung it on the edge of the teacher table, which I was leaning on the edge of as we went over some point of rhetoric or other. And I don't know how it happened but I think I must have jumped up in enthusiasm at some student making a good point because ... on my way back to the teacher table (may I remind you, I have no depth perception) I walked into the open classroom door. With some amount of force. You know... the skinny part of the door. The door's thickness. The door was open, and I transported my skull into it. So hard that I fell straight backward as if I'd been struck on the forehead by a faith healer... and.... me and my redwood leg landed *fwomp* or more like *phthunk* on the ground. On my back. Except I couldn't get up. Because I had no practice in hauling my ass off the ground with a redwood leg. 

So one of the biggest kids... I think he was seriously on the football team and he totally looked like one of the kids who would have picked on my throughout my school years, had the graciousness to ... well. .. he pretty much pulled me straight up, like my backward fall in reverse. 

So yeah, I had tears of humiliation and tears because I had sort of hit the bridge of my nose, along with my forehead, and that just brings the tears out reflexively. I sort of brushed myself off, leant back onto the teacher table and continued the lesson from where I left off. At first there was minimal participation. I think they expected me to say "class dismissed" or run (hobble? scurry?) my way out of the room or... I dunno. I think they maaaaaybe thought I was a little psycho for picking back up. They saw how hard I hit. The whole door rattled. But I must have had a grim look on my face because we finished the damn lesson and they went on their way.

Have I blogged that story before? Because it feels like I have. Well, it is a recurring ghost, that one.

Fear is the ghost of pain. Blind woman teaching. Blind woman falling. To mix some cliches, I've got my fingers crossed about Friday but I'm not holding my breath.

20things : Home Defense at Ten

1. One day at fourth grade assembly they spook us about house fires, air films of flames digesting shingles and professional actors overwhelmed by incendiary shrapnel from the ceiling.

2. The third-nicest thing my dad ever did for me was go into the backyard and discharge the fire extinguisher. 

3. A loud flume arced between the night sky and the flood light's penumbra.

4.. I had told him I was scared of a fire.

5.. The whole truth: I was scared to be blind in a fire.

6. I had dreamt for several nights of throwing myself on the ground, belly-crawling down the hallway with the 70s carpet.

7. I needed to know could I secure the heavy tank by touch, pull the pin, squeeze the trigger, but I was too anxious to try.

8. I think his demonstration was to show me it was safe, not unconquerable, or that he could protect me. 

9. In my heart I did not receive these things as true.

10. I did try.

11. But he dreams continued. To flee the boiling canopy—elbows, knees, elbows, knees inch forward.

12. In school the facial tics got worse. No one said / did anything. 

13. I was starting to grasp that normal children didn't behave like this.

14. There was no way to stop.

15. My face was raw from the damage my fingernails did to it.

16. Things happened at school that I don't like to talk about.

17. But I was so young (ten) and who can blame anyone? Now, when I stand in tadasana, how can I blame---

18. The birr of my blood thrums in through my feet, up through my thighs. Up still further.

19. Until my crown is ablaze or—.

20. I'm still afraid of burning.

[I wrote this late last night to post this morning. Ironically, I poured boiling kettle water over my hand before I managed to get the it in the french press.]