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.

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 : motivation routine waking sleeping

1. At 6:35, my brain turns on. This is the absolute latest it has turned itself on in months. This is how late I sleep, and I have no reason to get up this early. This is off-time, healing time. I don't have to go to work.
2. Telepathically, Rus knows I'm awake and so comes over and yowls for breakfast.
3. I don't want to wake Mike up so I get up.
4. The moment my feet hit the floor I'm like fuck, another day. Weren't we just here yesterday?

A flower I clipped from the long-lasting Valentines bouquet to cheer myself.

5. Get up make coffee cat meds cat food human food computer facebook email blog surf internet until my conscience says I can't possibly procrastinate anymore shower start day.
6. From within my metaphorical nautilus, last night, I wrote down a list of things to do in the morning before I have to leave the house.
7. I put cardamom and ginger in the coffee this morning. Also to cheer myself.
8. It's sort of working.
9. Today I have to leave at 12:30 and I won't get back until 9:30.
10. Nine hours is a long time to be out for someone with fibro, okay, for ME with fibro and attendant visual difficulties that make me so tired. Nine hours is a long time to be up w/o a nap.
11. Okay now you know one (another?) of my embarrassing secrets.
12. On a normal day, I can't go more than nine hours w/o sleeping.
13. Today I will have woken up at 6:30 {math math math} I think that's 15 hours.
14. Most people go w/o sleeping for at least 15 hours.
15. Right now at this very moment I can hear a little voice going there's nothing wrong with you; you're just lazy.
16. But shit, there's a DBT skill for that. It's called "non-judgmental stance." It's like "be aware of when you're judging and stop that."
17. Easy, right?

Luna stole my flower.

18. I'm excited about my impending haircut.

19. Anybody wanna go with me to a reading at the Sphinx tonight? That place is designed to kill me, with its dim light, cramped space, and many overlapping floor rugs that stick to my feet, causing me to wobble.

20. Except it also has the atmosphere of an opium den, which is very relaxing, which is what I want my whole house / apartment to look like. The end.

Punch to the gut

So I was juuuuust getting ready to head out the door when I realized I had to open my email to print out  the actual assignment I'm doing the homework for. And I received a rejection for a press prize that I was really really hoping to at least be a semi-finalist for. Everyone who knew my work was like "did you try ____ Press?" And the judge was the editor of the press. And I sent it out way before the deadline. So I felt like my work would get a good read.

It's not like this is the first time. Maybe that's the problem.

I think the worst part about these rejections is I never know how far I got or what was missing in the MS. In retrospect I think that maybe my work was too risky for this particular press. That's the absolute best interpretation of the situation. But how can I know for sure? Maybe the MS is horrible. I've gotten enough feedback on it to know that's not true though. But maybe it's.... subtly *wrong*.

I write intense, high-stakes poetry. And I don't know where to put it. Or there's something intrinsically bad.... ugh, I have to stop the negative self-talk, because I've had enough success to know that I can succeed, if that makes sense.

I should maybe delete this post because it's rambly. But I'm not going to. This is difficult work.

I used to have a lot of confidence. The confidence got sucked away since August. But I'm trying to keep on anyway.

I just see... the career that I pictured myself having falling out of reach. And I wasn't deluding myself. At one point, it was within my reach. I received credible encouragement. No one ever said, hey, you're not good enough; find a different niche.

Four out of the six poets in my MFA graduating class have now published full-length collections. I graduated in 2005. It sucks being on the bottom.

My alma mater doesn't even count chaps as legit publications on the "graduates who have published" page. I looked.

Poets whose work I admire, poets who I wanted to emulate, have, by this point in their career, by the age that I am, published loads more.

It's not like I've dedicated my life to something else, like law school or marketing or psychology or technical writing or raising babies or organic farming in Montana and the poetry thing is an "also."

I wanted. I  w a n t e d. I wanted a different life.

I want.

Oh, and btw, I'm not even sure I can work full-time with all the different disability shit, and this morning I am not proud, I feel like it is shit, going on. I feel like the scraps of my life are just falling through my open hands.

Thought: I have so much to give. I just don't know who will receive.

Other thought: when poets whose opinion I respected, poets who I wanted to emulate, told that I was really good, it just meant I had further to fall / fail.

I'm not giving up; that's not in my nature. It's just... I had a vision of who I was going to be, and
I've not become that person, and it makes me weep. I'm going to have to be someone else, and I don't know who the fuck she is.

DBT says I need to go out there and do the homework anyway, like I had planned. But the anxiety. And the sadness. They hurt so fucking badly. My head is spinning, spinning, spinning.

An insight A gave me

So I had a TWO HOUR intake interview for the intensive therapy thinger where I am hopefully gonna learn the skills to grieve my mother appropriately and maybe stop being a hostage to such intense social anxiety. The interview was exhausting, but went really well. I almost didn't make it; I was so anxious. The woman who interviewed me said she wanted to "work it so that I was in one of her groups." We did hit it off, had a great rapport.

I love when it works like that, and people don't suck.

Anyway, allllllllll that talking about my extensive history softened me up for A, who was very good to see today. At the end of our work together, I posed an offhand question. Why did she think my emotions were coming out as anxiety / anger and not sadness.... which seems a more obvious emotion for grieving? She thought a moment and said, "Maybe because there's no fight in it. Sadness. It's like a surrender."

And really, she did nail it for me right there. What do I have a problem with? Being vulnerable. What makes one really vulnerable? Surrendering. Imagine how good it would feel to lay down my arms.

HAHAHAHAHAHAHAHAHAHAHA like that's going to happen. Well, I'll need to do some work on my psyche before it does. I'll need to. Because the situation I have now is untenable. I can't live my life like this.

When I went into recovery nearly fourteen years ago, it was like building a whole new, healthy person from scratch. I had to decontaminate myself of all the toxicity that had been passed on to me and sort of start over. Somehow I got the idea that living well = fighting. Surviving. Being in control. Because the old me was so so soooooo out of control.

I wonder if the ability to surrender, or rather the inability to do so, is also the key to why I have fibro. Just a thought. I have to go cue up "Eye of the Tiger" now.

And here's a picture in case you didn't feel like reading all those words:

Pool

updation

So YWI is now over SAD loved those kids loved them and I don't know how many are coming back for the fall if any well I guess I will have to love new kids then the weekend which started out sad but Mike and I scrubbed like hell the carpet in the bedroom to deal with Ravi's territorial behavior and decided indefinitely no cats in bedroom though I miss Ruskin & snuggling I know he does too b/c he doesn't get that much solo time with me and he's getting older maybe we'll let him back in for winter but Mike has surgery on the 27th so need relatively clean room for recovery sorry kitties

then we said officially farewell to Andrew SAD but also I got to meet his other friends which was neat and his best friend's stepmom makes AMAZING VEGETARIAN FOOD I almost wanted to re-convert the meal was so freakin bliss-tastic after that I don't remember Sunday much maybe that was the day we scrubbed the carpet I do remember writing two poem drafts and putting off yoga then I got a cold Sunday night and so yesterday I mostly watched tv 

brain in tofu state you know the extra silken variety that falls apart in your hands I had plans like submitting to Hayden's Ferry and designing second summer tattoo but will have to postpone them until feeling less crappy 

today I have to get my hairs trimmed and if it looks really really like crap maybe re-dye this aft but if not put that off too then A then Hem's tonight 

I have that revolting / fascinating feeling of being extra ordinarily snotty like my head is cut off from my body it is certainly cerebral except I get out of breath doing the stairs and did I mention the cold provoked a fibro flare (that happens sometimes not always) and when you run your hand along my arm it feels like ground glass lodged in my skin and you are trying to dislodge it

THE END

20things : nightmare

1. You know when you have a nightmare, but it's not your baseline gee that was disturbing nightmare?

2. But rather it's a truly helpless burning into your neural pathways with you forever nightmare?

3. Yeah, I had one of those last night, or rather this morning. 

4. I was in a lot of pain at the time and of course you know how it is with morning dreams. They're weirder.

5. It was one of those lucid nightmares in which you try and fumble your way out, and you think you do, except you've just woken into another layer of nightmare.

6. The worst lucid nightmare I've ever had was four layers deep.

7. This one was only two.

8. Except I hadn't had one in awhile.

9. Better living through chemistry?

10. Anyway, when I woke I was just so profoundly grateful for my own stupid life.

11. For 6:30am, for envelopes, for emptying the dishwasher.

12. My first thought was I want cookies for breakfast.

13. My second thought was I can have cookies for breakfast.

14. And I kind of misted over there for a second about cookies for breakfast, because I know where the cookies are, and it was about time for breakfast.

15. They're in the freezer. It's so hot, even at night. The idea of deliciously cold cookies... 

16. But I didn't really want them. I would get sick if I ate that. I wanted, and had, the idea. The delicious idea.

17. Now I have to make a lesson plan because I felt too crappy to do it last night. But right after I woke up, the idea for what I wanted to do just fell into place. 

18. I could see myself doing it, writing on the board. I could hear the kids writing, reading their stuff out loud.

19. Funny because I knew last night I was teaching Neruda's "Ode to My Socks" today. Although I cringe at that line about the decrepit fireman. 

20. I want them to start with simplicity: envelopes, emptying the dishwasher at 6:30am.

negotiations.

Dear My-Hip-and-Lower-Back-Muscles:

Please forgive me for not remembering all of your names. I need you to really cooperate here. I need you to not spaz on me until after 7/27. Really, August 1 would be ideal. I realize that I'm not keeping up my end of the relationship as well as I could. I have been remiss in some areas, and I'm sorry. I'm dehydrating you. Not feeding you protein. Sleeping in contorted ways and then having nightmares which stiffen my whole body. You can't blame me for that last bit though. The unconscious can be so wily. I'm going to try harder to at least give you more fluids and maybe yoga on Saturday. You like yoga, remember? I realize holding my torso up is a real task, and many times I tax you with bad posture. After that thing I have to go to tonight, where I'm sure the seats will not be to your liking, if there are seats, I'm going to try to remember to do some stretching before bed, which should help, yes? Please don't make me put on the back brace. Everyone agrees on how much we hate it.

Yours in bodily unity,

Jill

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 : 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.

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*. 

Needs. 


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*

flurg.

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.

On the potential assets of vulnerability

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

Brené Brown TED talk

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

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

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

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

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

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

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

OKAY HERE'S WHERE I COME IN:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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