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.

20 things : Radical acceptance is going to drive me more crazy rather than make me more serene

1. I was riding the bus home (of course?). The second leg of the ultra-annoying-because-it's-cold-and-two-buses-early-morning-Tuesday-yoga commute. 

2. I felt rather centered. 

3. Plus, I'd been in terrible pain all yesterday evening and this morning. We did some serious shoulder stretching that actually relieved it.  

4. As we lurched along, I reflected on my progress of late and thought I've been doing pretty good. I have been SLOWLY desensitizing myself to the World of People.

5. In order to get better, I have been doing these things, in order: therapy, meeting friends, poetry stuff, and yoga. Every week. And it's still challenging to get most of them to happen --everything except meeting friends.

6. But I'm starting to feel good because it's less challenging now. Thought I'm frustrated with the crawling pace, I'm also starting to be more okay with that too. 

7. So I'm contemplating these thoughts, and I go to get off the bus. 

8. As I'm walking up the aisle, I let go of a pole too soon, the driver slams on the brakes, I severely unbalance and run into a crowd of old people waiting to get off at the front.

9. I could feel myself fall forward, try to stop myself, know I'm going to hit them. I'm helpless in my momentum.

10. I hit them.

11. I rain a hail of apologies on them. Not just like sorry but SorrySorrySorrySorrySorry! 

12. This old man turns to me and gives me the look of death. Like, "you're nothing." Like, "I curse you and your future generations." And then slowly looks away.

13. The bus doors open. They get off and proceed to the intersection. 

14. I stay farther up the street and have a panic attack. 

15. Finally I make my way to my apartment, barely able to keep it together.

16. During my, um, surrendering process, this thought occurred to me: what would it be like for me to be able to forgive myself? Especially for stupid shit. Stuff I can't help. Stuff that's an accident.

17. I monitor my every move. I'm choreographing all the time. I rarely stop being self conscious. 

18. Monitoring and choreographing is a life-long trait. That is not a Jill-had-a-setback-after-her-mom thing. The self-loathing I feel when I slip up is also perpetual. Post-mom-suicide, the amplitude is higher.

19. But, you know, what if it weren't? What if I could somehow stop hating myself so viciously? [I can't believe I'm blogging this to the entire goddamn internet. Well, theoretically.]

20. I see no concrete way forward to this goal. It's like saying I'm going to build a rocket from recycled cereal boxes and shoot myself to the moon.

Here's a photo:

Choose Life

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.

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.

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.

moving on -- new creative project

So they'll be discharging me from group a week from Friday. I was wondering if perhaps I would feel All Better. The answer to this question would be nay. What I've gleaned is that all this time (all this time) spent in group was to give me the skills to enable me to process the emotions --especially regarding my mom, what she chose and how it ended --while taking responsibility for my own safety. I have to say that before I started I was pushing emotions away. Some of you who know me may that is ridiculous --you see an expressive person who is in touch with her emotions. I have been through so much therapy that I can talk about my emotions on an intellectual level. But feeling them is a different matter. I could talk about the origin of the problem, but right now it does not seem appropriate. The point is, the therps stripped off some layers of varnish and I got my emotions back.

But between the times when I'm forced to reckon with Mom and It, I need a bigger-than-ever creative project to pull my attention and charge my brain to do its very best work.

So I had an idea a few weeks ago.

Not gonna tell you what it is yet, but here's some notes as I was thinking about a mission statement, Submission Guidelines, and/or a letter from the editor.

People have bodies. Animals have bodies. Hybrid human animal-bodies exist in the realm of myth or just beyond your closed eyelids. A body can be a force of locomotion, or a body may require augmentation to move itself. A body can be a metaphor. A body can be a source of pleasure. Pain can be a muse. Not psychic pain but actual visceral pain pain. Where does psychic pain end and visceral pain begin? When I say sensuality does that connote pain or pleasure? Senses. Viscera. Writing the body = writing what we know because we inhabit it. Writing your lover’s body so you can keep it on paper. From three dimensions into two. When I hold your hand do you feel it? Do you feel it with your brain or your skin?  Our bodies can make us feel like amateurs. Strength in vulnerability. Taking a risk and writing about the body can make you feel like an amateur. When I wake and put my feet on the floor I feel like an amateur. I would like to reclaim the word amateur to mean risk-taker. Yang energy pushes us forward while Yin energy causes us to reflect. What does that mean? I am forever striving. I’m not good at being. I mistyped there and had to correct it. For a second it said I am not god at being. We are gods of our own bodies. We are slaves of our own bodies. I watch your body when you sit across from me on the bus. I was mainstreamed and then I started to use a white cane, then stopped, then started, now I’ve stopped again. Am I blind or not? Our bodies are signifiers. Our bodies are false signifiers. Our bodies are liars. Our bodies are storytellers. I want to tell stories about the body. I want to hear your stories about the poem that is the body.

Pushing back against agoraphobia

N says you don't present [yourself] as needy as you say you are, but I believe you.

I say I have good days and bad days. 

Recently I was offered an interview at an intensive (9 hrs / wk) group therapy program. It's on Friday. I'm thinking of making a bulleted list of shit. B/c I get flustered talking to strangers.

For me agoraphobia feels

• Like people can touch me with their eyes. 
• Like there's a magnetic field or something that projects from them to me. 
• When I feel it it's like grating over my skin. 
• Like pressing down on the nerves of my skin and I can't breathe the same.
• Like every distance is too far away from safe.

This happened before once but it was so long ago that I [would rather not] have to dig through those years to remember what the solution was. Also I was 17.

I've decided to go back to being vegetarian.

B/c I'm worried about failure, I've decided to be veg + fish, like Mike. And not be too self-judgmental as to whether I "succeed" or not.

When I became veg for the first time it was b/c I was worried about the contribution I was making to factory farming, etc. When I went off it was b/c of curried chicken legs on the grill.

It's not like I never thought about those things after. About animals, the environment.

If you leave me a comment about how animals taste good or how my philosophy should have withstood curried chicken legs or how veg + fish isn't doing enough to blah blah blah I will delete it.

Maybe I decided I want to work towards veg again b/c I feel like it.

This morning is a good morning.

This morning is a good morning b/c Mike helped me by liberating me from C who is triggering lately just leave her a check and tell her to lock up and by driving me through the first leg of my travels.

Sometimes there's a line btwn interdependent and needy and it's blurry. I recognize also needy is a judgment I have put upon myself.

Maybe needy is what I feel when there isn't enough interdependence scenarios to make it work. My life work. Which is complicated right now. And I don't mean my life's work; I mean my life's working, its operation: showering and leaving the house.

My friends have been so good to me.

I have also decided that, for now, I'm using the white cane only for extremely necessitous situations: night, crowds, unfamiliar streets. It is a risk.

N said try to access your personality when you were in Pittsburgh before you used the cane. What were you like?

Smiley and friendly and I looked people in the face. And I felt like I was cute all the time or most of it.

And I didn't feel the eyes pressing pressing pressing on me all the time. I know I have regressed I know I have transgressed the cane is a tool but it is also a marker also a badge and not like (A) badge in The Scarlet Letter or something.

Badge of honor but I prevaricate I also feel in the part of me I don't want to explore I feel like it is (A) badge as well and that's why I need to put it away for now b/c my skin is so raw from everything and the nerves

it feels like iron filings rrrrrrrrub against my arms and neck when people look at me.

Fascia tighten tightens my protection my net my inadequate-

ness.

But here's also some pictures:

Brickface

Lamb Shank

Surely this is making me late.

To sit here and blog because we have to leave for the airport in what sounds like a lot of time, but is actually only a little when you consider it's me having to do the preparing of myself for it. Meaning I'm bad on traveling days. I orbit around, quasi-useless, getting little bits of tasks done and going on to other little bits but not finishing anything.

We are going to Georgia for the memorial service this morning. My dad is not coming. He wanted to but is not. I am reading a statement. Then part of a poem. Not one I wrote. The poems I write are too dark to be read at funerals.

Ruskin scared me this morning by making some sort of weird cat-noise that I've never heard before. Like an exhaled hiss through the nose? With his mouth shut? Not a cough? He only did it a few times but.... I know last night we put more flea topical stuff on them and he wasn't pleased. I think he scratched his head and then licked his paw or something. From having Mike as my decoder-of-all-things-technical-whether-I-wanted-to-know-it-or-not, I learned that apparently Advantage is a nicotine-derived pesticide that is lethal to insects but not harmful to mammals. Or that's what I can remember. He (Rus) also puked in Mike's slippers during the night. Mike says I think he's mad at us. It's true, by 14 years of experience, Rus recognizes the suitcase and is Not Pleased.

I am in the Process of Conserving Everyone. It's like invisible rosary beads where I worryworryworry about them so they will be safe, even though I know that worry doesn't do crap. You can never prepare for what will actually happen or who it will happen to. I can't lose any more cats. I can't lose any more people. No we haven't found Ravi. If we found Ravi it would be a big blog post entitled WE FOUND RAVI.

Yesterday I mouthed off to a few neighborhood drunkards (that sounds like I know them personally but there are so many that they are anonymous to me and it's actually two neighborhoods) who were attempting to micromanage my street crossing and bus disembarkation, and would not take no for answer. I think they might have perceived me as Uppity (Hi Kathi if you are reading this).

I'm doing okay on countering my newfound agoraphobia but not great. I am fallible failing fallen falling. My psyche is slowly falling through space, trying to relocate its tether. If you see my body, that's what's going on inside of it.

Throwing myself back into work

So even while everything is sort of crumbling around me, I find it consoling to work on work. Anyone who admonishes me, oh go ahead, take another pill that'll solve everything has no idea how grateful I am that pills make it possible for me, right now, to not be losing my composure completely as various actions play themselves out in GA. I'm all for "better living through chemistry" as they say. It made my 17-year-old self able to leave the house twenty years ago, and today chemistry is helping me be out of bed, thinking and working, without my emotional core breached and spilling all over the house.

On the DS-HUM listserv, Kevin Gotkin (at UP) shared a film that he produced. To get the most out of this blog entry, you should really go watch it before reading on. It's about half an hour long though, so I understand if you can't go see the whole thing. But at some point in your copious free time, you should.

This film, as I understood it on 0.75 cups of coffee, is about disabilities making possible genuinely and innovative views on, and thus methods for conceiving of, artistic production. Toward the end, this film Rupture, Sometimes focused on a woman, Jessica Feldman, who spoke of her experience with seizures and then being on medicine to ameliorate the seizures so she could function and produce in our larger normalizing society, which she recognizes as "linear." Her own experience before that, because of the disorientation of periodic seizures, had her perceive time as "ruptured." And she says that while she is glad to be productive, she misses the opportunities that "the rupture" offered her in terms of knowing the world differently.

This kind of ties into an idea I formed when writing up a sort of personal artistic statement for Prosody a few weeks back. I never got to include this idea in the show, but I'm coming to realize the benefit, the artistic fruitfulness of what I'm calling creative navigation. For a long time I saw only the obstacles of having a disability (or several). I was disheartened about how there will pretty much always be obstacles. We're not going to transition into this universally accessible society in my lifetime. But now I'm beginning to see that the process of working around / among these obstacles can be incredibly fruitful. It's causing a shift in my own poetics that I can't quite articulate yet because it's still happening. 

If you have a disability, you get thrown into the vicissitudes of your own idiosyncratic body, or brain, like, a hundred times a day. 

For me, it's like all of a sudden I'm thrust from a situation which is normal for me and my own idiosyncratic body / brain, and then something new comes along to add to my experience. 

I am legally blind, have fibromyalgia, OCD, and PTSD. Going out into the world is really challenging. Like, psychologically taxing. Even when the event I'm going to is something that's supposed to ease the burden, like yoga or massage therapy. Simply getting there and back can be so stressful that it almost-but-not-quite cancels out the good that happened at the session. 

Just when I think I have my shit together, so to speak... just when I can say, all right, I've reconciled with these certain obstacles, there are new ones. And all I saw, before I paused to reflect on it, was the stress. 

In the moment, it feels like someone picks me up, turns me on my head, holds me by the feet, shakes me around until I flop like a ragdoll. Then this "force" plops me back down at, for example, the bus shelter and says, okay kid, back to your regularly scheduled program.

But maaaybe it's worth considering the alternate vantage points that this very wobbly, ungraceful, and out-of-sync journey opens up for me. I don't know the answers yet for myself, on how this POV-shift (from stress to access --and the thing I'm accessing is a different part of my artistic brain) will redefine me and my art. But a shift is coming. Really, it's already happening.

FAVORITE MOMENTS of the film: 
Georgina Kleege about "dismantling simple binaries"
Kleege again: "all of the messiness of lived experience is ... wiped out of the philosophical discussions of blindness"
"gradations, shades, and registers"
Kathe Kudlick about "alternative soundtracks"
Amanda Cachia "generative aspects of disability"
Jessica Feldman "time doesn't actually function the way linear history describes it"
[and I appreciate all the music credits as they happen-- new stuff to d/l from itunes]

What I did and didn't do on my summer vacation

Although I was completely bummed about dad changing shore plans last minute so Mike and I couldn't go, I do want to say that I got to do some pretty cool things this week instead of being at the ocean. I actually skipped two readings because I was rather fatigued. Which means I could have done cool things four out of five nights of the week. Actually, there were two on Friday night, but I was dead-exhausted and opted for neither.

What I did do: I went to the Beauty Is A Verb reading on Thursday. I'd been anticipating this reading since last April, when the date had to be moved because of the f*ing bomb threats at Pitt. Usually I find academic venues a bit dry and difficult, lacking in ambiance. This was still the case at the O'Hara Student Center, but the readings were fantastic. And and AND I got to meet three people who I'd been wanting to meet for quite awhile: the smart and sassy Jennifer Bartlett (she's really funny too, and kind) the fierce and feisty Kathi Wolfe (I think I have a crush on one of her new personae, and she said she likes my work and I should email her) and ... Mike Northen, who was rather laid back and professorial and I felt a little awkward because I'm shy and I wonder if he is too. I had that magnets-repelling feeling that I get when two shy people, myself being one of them, try to have a conversation. Nonetheless, he recognized my name from having a poem in Wordgathering this month, and he told me to keep sending... which is really a moment of validation I needed and I sooooo appreciated it.

ASIDE: I had this convo with Mike (husband Mike not editor Mike) about my ridiculous neuroticisms whenever I have poems accepted. For example: an editor quickly accepts four out of five or six poems I sent. My response, although I'm very happy about it, is also tinged with OMG, that editor wasn't very discriminating. They're probably just desperate. They need to fill in some space. It couldn't possibly be because they liked my work that much. If an editor accepts one out of five or six poems that I send, especially if it's an online venue, my reaction, although I'm quite pleased, is tempered with really, only one poem? Wow, I just barely got in. The editor must just barely like me. Why did they choose this poem at all? What about the others? Were they bad? REALLY bad? It was probably a pity-acceptance.  I mean, what is wrong with my self-esteem that I can't win either way? But really. Acceptances are winning. Period-end-of-discussion. Even rejections are winning, because it means I actually sent stuff out instead of procrastinating on it. Now if only someone would pick up the manuscript...

Anyway, then on Friday Pitt had a roundtable discussion about dis-studies in the humanities. I guess right now their dis-studies program sort of follows the medical model (grumble, cure, etc.). But they want to parlez. So good on them. I hope this panel got the ball rolling as far as a possible program at Pitt. But it'll be years, I bet. It was a good, stimulating discussion though. I felt like my brain had been to a mini-conference. This is a good feeling. I haven't gotten to go to conferences in quite some time, due to health stuff and work stuff. But... Multiple Perspectives in April and AWP in February. I think I have the months right. Anyone wanna split a room for AWP?

True things and nonsense.

A thought that I think my mom thinks, even though I have empirical evidence that suggests otherwise: because she doesn't want to live with any further disabilities, it somehow negates my life. Like she thinks a life with a disability isn't worth living.

Last year or maybe it was two years ago (they blend together) when the docs had to amputate part of her foot, she told me that if she had any further infection in her foot, infection which would impel them to take off the whole foot, that she didn't want to live without a foot. That she would rather be let go septic and die. Fast forward to this situation, and replace foot with (possibly temporary) feeding tube.

Putting aside the irrational thought for the moment, her statements also remind me of an opinion I encountered when I was trying to lead my students in a rhetorical analysis of one argument among the many opinions in the ethics of what people call "the right to die."

ASIDE: Again, please, I don't want to debate ethics on the blog. This is me, emotionally processing. I put it into the world instead of keeping it private in case even one other person that reads this may be helped by it. Also to give my friends insight into what is happening with me right now, since I pretty much am not talking about it in their company.

Anyway, the article was called "Rising to the Occasion of Our Death." Here's the paragraph I'm interested in right now:

[at this moment both Luna and Ruskin have come in whining. One is acting like a kitten on speed and one is acting like a grumpy old man. And now small children are babbling outside my window. I can feel my early morning, tenuous concentration start to erode a little.]

Advocates of active euthanasia appeal to the principle of patient autonomy-- as the use of the phrase "voluntary euthanasia" indicates. But emphasis on the patient's right to determine his or her destiny often harbors an extremely naive view of the uncoerced nature of the decision. Patients who plead to be put to death hardly make unforced decisions if the terms and conditions under which they receive care already nudge them in the direction of the exit. If the elderly have stumbled around in their apartments, alone and frightened for years, or if they have spent years warehoused in geriatrics barracks, then the decision to be killed for mercy hardly reflects an uncoereced decision. The alternative may be so wretched as to push patients toward this escape. It is a huge irony and, in some cases, hypocrisy to talk suddenly about a compassionate killing when the aging and dying may have been starved for compassion for many years. To put to bluntly, a country has not earned the moral right to kill for mercy unless it has already sustained and supported life mercifully. Otherwise we kill for compassion only to reduce the demands on our compassion. This statement does not charge a given doctor or family member with impure motives. I am concerned here not with the individual case but with the cumulative impact of a social policy.

My mom has stumbled around in her life alone and frightened for years. She has stubbornly refused to be pulled from her own morass. Many have tried. She has, over half my life, whittled away her choices until she got to where she's at now.

However, I still can't help but think, for example, that she would not really believe she'd lose her independence, say, with an amputated foot, if she knew she could afford a vehicle with the appropriate modifications to still let her drive. Or if she could move to a city and a climate that would allow her the ability to get around easily using a wheelchair.

But part of me knows this is crap. She equates having to use a wheelchair, even, with like... the worst thing that could happen ever. I really do think she would rather die than use one. I don't know if this is attitudinal, or if she is making this assumption based on some broken cost-benefit analysis. Is the analysis still considered broken if she's poor and living in rural GA?

She refuses counseling.
She refuses counseling.
She refuses counseling.

She would rather die than use a wheelchair.

She mainstreamed me. She told me that I could be like anyone else. She fostered an independence in me that she didn't have by making me do things that I was terrified of doing and sort of like... somehow implied that I had no choice.

I never felt like it was okay to refuse. To say X is too much. I rode horses, did dressage and stadium jumping. She didn't get why I didn't want to compete but eventually let me have that. A lot of time in the arena alone, hating myself. But being thrilled I made it through another lesson. My body was all muscle, so small atop the horses who got bigger and bigger each year. Until I was riding a 16-hand gelding and felt like an ant on the roof of a Porsche just as it enters a tunnel.

I got C's in math because I was bad at math, not that I couldn't make my eyes go back and forth between board and notebook and board to copy the long algebraic proofs and still concentrate on the logic behind them as it was being explained to the class.

She yelled. She screamed. She called me horrible names. One of which was lazy. She asked me how I would ever get into MIT with those grades. I ended up not applying. Not that I'm saying I was a thwarted computer scientist. It's not where my heart truly lay. But.

But it was still a gift.

I realized I could fight through things though they terrified me and that's how I lived my life for a long time. Gritting my teeth against the edge of terror. Probably when I started working with A was when I began to loosen my grip a little.

If this entry doesn't make sense, it's because nothing, nothing made sense or does.

Another clarification

Ah yes, ladies and gentlemen, you've been waiting for it. At last... drunk blogging. Those of you who know me well may wonder how it was I come to have never drunkenly blogged before. Ahem. Anyway here's how it happened: 1) I got some good poetry related news 2) I'm a total lightweight. 3) No, no one has accepted the MS yet; it wasn't that. 4) But I will share it tomorrow.

I just wanted to clarify something from my previous post this morning. I've been feeling badly all day about the implications of this statement. Earlier today I wrote:

I could never do this for someone. Starve them. Even if they begged. Not starving. Not withholding life / water / food. It's too cruel. I couldn't do what my aunt is doing right now. But the situation is different, maybe. To not-starve my mother would take colossal positive action, defiance of her immense gravity, her intense sadness that no one acknowledges but surrounds her like an aura. 

I just want to clarify. What my aunt is doing is not the same thing that the woman in I Helped My Mom Starve is doing. Those of you who haven't been following closely along might have missed the fact that starving is what can basically happen when one refuses treatment for severe gastroparesis. This was my mom's choice, and AFAIK, she made that all by herself; there was nothing anyone could do or say about it.

The aunt and uncle who take care of my mother and my grandmother (who is in her nineties) are WONDERFUL people, who are doing an insanely tough job because right now they don't have much of a choice. They are doing, out of familial kindness, a thing I could not do. I could not care for my mom in this situation. Could not. Because of what it would do to me psychologically. My aunt is there for my mom; my uncle too.

Just wanted to underline that point.

Monday Morning Update

I haven't blogged in awhile and I suppose I should, just to keep up the habit. I don't want to fall out of it. For me right now, any positive action, an action that defies gravity, is also pushing against this great sadness. How long does she have left? Did I tell you? I searched the internet for data on how long it takes a person to starve to death. The answer, it seemed, is around 60 days if you have adequate hydration. 

I also found a blip about a book --not quite a review -- called How I Helped My Mother Starve to Death by a woman who in fact, did what she said. I guess she had promised her mother she would do this for her, and then did. It took two weeks. 

I could never do this for someone. Starve them. Even if they begged. Not starving. Not withholding life / water / food. It's too cruel. I couldn't do what my aunt is doing right now. But the situation is different, maybe. To not-starve my mother would take colossal positive action, defiance of her immense gravity, her intense sadness that no one acknowledges but surrounds her like an aura. 

[[[Because this blog is open to the internet, I must now restate: 

PLEASE NOTE THAT I WILL DELETE ANY COMMENTS RE: THE BROADER SOCIETAL PROS - CONS ABOUT "ASSISTED SUICIDE" IF THEY APPEAR ON MY BLOG OR FACEBOOK. THIS IS MY PERSONAL LIFE RIGHT NOW, A SITUATION THAT IS TROUBLING AND BEYOND MY CONTROL, AND I'M NOT LOOKING TO START A DEBATE. THANK YOU.]]]

For years now, her voice has sounded like she is about to cry, or has just finished crying.

I don't know how the docs decided they should approve hospice for her. 

I swore, and I must continue to swear to myself, that my job is not to fix her anymore. To finally let her have her way. I must continue to swear this to myself until she finally passes. N told me two years ago that I need to let go of her or "it would destroy me." N is not a very directive person usually, so I tried to listen. Still, the instinct is strong to not let go.

I wonder how far into the 60 days we are. How far were we when I visited her? 

I want to call her, but don't want to call her. I don't want to know how bad it is right now, or how good. I have a therp session with N at one-ish this afternoon, so I'm calling this morning. 

[UPDATE: My strategy to call her before my therapy appt has been foiled. I called and she was still in bed -- this is a change in routine from when I was visiting her. At that point she was getting up around 8:30-9am. I asked if I should call her later... hoping she'd say 11 or so... and she suggested this afternoon. Frak. But her voice sounded.... like it always does. Still.]

I'm trying to concentrate on my own positive action in my own life. A new acquaintance has solicited some poems from me for an amazing site of hybrid art and writing. What a boon. It raises me up, helps me feel connected.


* * * 

Last Thursday was the first MW workshop of the semester. I had to leave briefly to cry. One of my meds makes me foggy, so that when I try to, for example, carry on a scholarly conversation, and I'm pressed to clarify my ideas, I just get verbally derailed. Like the thought I was *just having* evaporates, dissolves back into my brain. 

N has since changed the med. We know though, that this replacement med, can make me hypomanic. Which is not the same as full-blown mania and in fact, can be really really enjoyable. But either I'm not there yet or it's not enjoyable this time. I'm a bit less foggy but I still have these moments of .... haze. This med is supposed to be "short term." How long is that? Until my mom passes, plus __ days to mourn her? N is a good therapist. If I wanted off the med, I could come off. For now it's helping tamp down the extra OCD that has come out under stress. It's helping, but I don't have complete coverage. 

Mike says:

You need to be okay with not being 100% right now.

Most people if they were dealing with what you're dealing with would be in bed crying.

This situation is just fucked up and there's not really anything you can do about it [with the implication that what I can do about it is take care of myself].

* * *

I don't cry a lot. I'm not in bed more than usual. The idea of talking to people about anything is just extremely taxing though. Even the smallest small talk. And when I'm out, I feel that paranoid feeling like everyone's looking at me and judging. I mean, I feel it more than usual. I feel it to the extent where I recognize it's irrational. It's like a panic attack in slow motion. And when I'm outside, it takes so long to get home. Being at bus stops is excruciating for this feeling of being probed by eyes. Of "I don't have my face on right please stop noticing it."

If you're reading this, I don't need inspirational comments about how no one is truly normal, I can choose to sink or swim etc. This is me venting feelings. I just need you to listen.

Of course I choose fight. I finally realized I'm not like my mom in this way. Sometimes my fight looks to others like flight. It is called my own self-preservation. 

Maybe that's ungracious to say about my mom. She is the most stubborn person I know. She has always, if not fought, which to me implies pro-activeness, then hung on, which still has tenacity to it. 

* * *

I'm maybe starting an intensive group therapy thinger for people with OCD in a few weeks. This is somewhat exciting to me because in my whole life I've known maybe three people who have actual OCD (not like, when I don't line up the silverware on the place settings exactly, I get a bit antsy). I'm trying to think if that's more or fewer than blind people I know. Calculating... I think it's the same. Three blind people. Three people with OCD. 

It is my form of positive action. Well, one of them. The second thing is to continue with poems, poetry, dis-studies.... and I gotta go now b/c the door is knocking.

Bath

So I just took my first oatmeal bath in an attempt to soothe my spots. The spots creep ever-upward. They have now gained the territory of the torso, reaching the stomach, breast, upper back. It's like a gradient. They are most prevalent at the ankles and calves and then thin out-and-up.

MY OATMEAL BATH EXPERIENCE

First of all, consider the name: colloidal oatmeal. I thought: spheroid, toroid, ... it's shaped like a colon? I knew that wasn't right but the word colloidal was intriguing. Googling the etymology gives you

1847, from Fr. colloide (1845), from Gk. kolla "glue" + -oeides "form"

It's a type of suspended solution.

Secondly, the packet. Made by Aveeno Active Naturals. It looked like the type of oatmeal packet where you'd microwave it for breakfast. Which led to my third fleeting thought can I eat this? No. For external use only. In bold type. Directions: Turn warm water faucet on to full force. Slowly sprinkle packet of colloidal oatmeal directly under the faucet into the tub or container. Stir any colloidal oatmeal settled on the bottom. The writers of the package copy liked the word colloidal too.

I turned on the faucet, sprinkled slowly at first and then got impatient and sort of dumped it in. It smelled like (surprise!) oatmeal. The clumps --of course there were clumps b/c I was impatient --looked like cat vomit. I tried not to think about that as I reached down and unclumped them with my fingers. They felt like warm velvety goop and dissolved as soon as I touched them.

As I slid into the tub I wondered about my new ink and soaking it. For two weeks, no sun, no soaking, no pools. Soaking opens the pores and compromises the ink or something. Then I remembered that I marked 8/31 in my planner as TATTOO HEALED TODAY.

August 31 was also my mother's birthday.

Oh dear God I just said was. Fuckshitfuck. Not was was. Just was, as in, it happened yesterday. Not that it never will happen again. Not what I meant. She's 66 now.

I did not call her.

At the time of our recent goodbye I told her I'll call you in a few days. If you're up for talking we'll talk. She smiled and said okay sweetie. There were tears in her voice but her voice is one that sounds like there's always tears in it.

I did not want to call her until after the Prosody taping was over. Now it's over. I should probably call her tonight.

I told my brain not to think about that.

So into the tub. I stretch into a forward-fold and scrutinize my legs. Today a new friend made a reference to something that happened in 2002 but you were probably still in your crib. I replied fake-indignantly, pshosh! I'll have you know they send babies to grad school now. I started grad school in '02. She : are you thirty-five? Me :  thirty-seven. She : you look twenty ____. Some number I didn't hear. Well, from the hips up I might look twenty-mumbles, but from the hips down I look my age and more. Mottled pink-gray-pink. Lots of varicosities and knots, bruises, blue stripes and swaths. And of course, the recently arrived constellations of spots. The mess on the back of my left ankle that I've named Clusterfuck. The one in the bend of my left knee that I named Sammy.

Then: damn, this tub is shallow. Hotel tub. Who knew it was more shallow than the one at my house? I pretzeled my legs underneath me and submerged my head to the point where the water was over my ears. My thighs, knees, and the top surface of my torso still stuck out. Chicken, get in the pot. I couldn't get myself into the pot.

I looked up. Towel rack. White towels. The deliciously scratchy kind. My hair floated around me. I thought what if the spots come up on my scalp. I briefly fantasized about shaving my head. I remember what that felt like. The divine feeling of quarter-inch-long head stubble. I thought about my natural hair color, which is sort of an ashy brown. Which made me think about how my mom, for the first time since I've known her, has her natural hair, with no processing of any kind. It's actually really beautiful. She had it straightened when I was there, or perhaps merely straight. Cut into a tidy little bob. The color a deep nut-brown with streaks of gray in her long bangs and at her temples. Little threads at her part. I think it was the most beautiful I've ever seen her hair.

I wondered if it would fall out, now that she's starving.

I told my brain not to think about that.

I looked up at the towel rack again. I wished I was at home with music in my tub where the water will cover more of me. I absently sloshed water over my exposed torso. With my ears underwater I could hear a deep hhrrrummm hhhrrruuumm. This room abuts a service elevator. Distant noise of people talking, moving crap around. I begin to sing very softly I hear the roar of a big machine / hot metal and methedrine / I hear your dive bombers / empire down. Well, at least all those words are in the song anyway. More of me sloshing. I wonder if the guys talking can hear me sloshing like I can hear them talking. I wonder if they wonder if I wonder if the-----

The water got cool too fast. I sat up, drained the tub. Some colloidal cat vomit had streaked and plocked onto the bottom of the tub. I was like eeeewwww and wiped that up. I didn't want the housekeeper coming tomorrow and thinking sheesh what drunks or something. Only later did I realize there would be one if not two showers taken by the time the tub was cleaned.

[I think too much about what other people think about me.]

I compromised a white towel with some red hair dye. Oops.

I leave stains everywhere I go I told my brain not to think that.

BOTTOM LINE:
Bathing is relaxing.
Sloshing is relaxing.
My lower back and hip muscles feel better.
My skin feels extra soft.
But also prickly and itchy.
Deeper tub next time.

Foggy, druggy, dopey, mopey, and panicked

This is venting. You can skip if you're bored or not into that whole whine-whine-whine thing.

Mmmm, wine.

I like to be efficient, even in my venting, so I'm separating it into two topics:

1) MEDS
I'm already taking a cartload of meds. My therapist N upgraded my meds to deal with all the crap that's happening right about now. Which is great. It means I don't go supernova on the streets of Pittsburgh, or throw glasses of water at people at lunch. It also means, however, that I too, feel like I have age-related dementia. I'm used to fibro fog. But this is fog of yet-another-level. I'm grateful that I can work out and also write coherent sentences and stuff. I couldn't do those things the last time I took such heavy-duty psych drugs. But I lose words. Nouns, mostly. I tangentialize and then forget what I was talking about. And there's still breakthrough-anxiety (of course, right?) while I subconsciously process what is going on with my mom, and everything else.

The breakthrough anxiety is exacerbated by the fact that we have been at our usual routine. For example, I'm at a hotel right now. Before that I was at my house for an evening. Before that, GA. Before that, Eastern PA. Before that, my house for a few nights. Before that, hotel.......... So like for example, I'll misplace my cell charger and all of a sudden ABSOLUTELY EVERYTHING will feel overwhelming. When I am at home, and have my normal (not bad) level of ocd, the ocd actually works in my favor and somewhat ameliorates my visual impairment. Everything goes in its place. That way I don't have to look to find it. I have my house, my items, practically memorized. I say practically because there's probably some I don't have memorized but I can't think of what they are right now. I can navigate, and accomplish things within my house when in total darkness, in which I am completely blind. But right now it's like.... OMG.... cell charger..... where .... intense feeling of PANIC WORLD ENDING GOING TO CRY AND NOT BE ABLE TO STOP HELP OH GOD.

To continue with meds, I was just able to go see my PCP, goddess bless her she is wonderful and got me in this morning to deal with the scabs on my legs. She calls them lesions and I'm like, ew. She said what she thinks is happening is a bacterial infection and / or I'm getting new spots because my immune system is cranking out extra histamine like a champ. She has me on an antibiotic (which is like so f-ing huge.... luckily I literally have a pill cutter with me, at the hotel. Which I just bought yesterday) and a topical steroid, which I have to dab on each spot 2-3 times a day. And she wants me to take Benedryl pills at night and put Benedryl topical cream on the spots when they itch in between applications of the steroid.

So I counted the spots. Because i had to put the steroid on EACH ONE, which I will do at least the first few times and then will probably just rub a daub into the clusters where there are clusters. I have 38 spots. Thirty on my left leg and eight on the right. Plus that scary thing on my right ankle. She poked, prodded, visualized and was like, "For that thing alone, you need an antibiotic."

So I should stop getting new spots and these ones should decrease their gross-lookingness. Yay. Seriously yay b/c they are so itchy that I scratch them in my sleep and wake myself up.

2) MY MAYBE-NOT TRIP TO THE SHORE
I was supposed to go to the shore with my family, which I haven't been in 10 years. I was really looking forward to this vacation. With everything, I need it more badly than ever. I also told my dad that I was looking forward to walking down the boardwalk with my husband, something which I have never done.

However, circumstances etc. means I would have to take a Greyhound to Allentown so I could depart with them. But Greyhound is hell on my back. Seriously. And I already had one back spasm last week. Size medium. Which means I could still walk, but it was dicey for a little while. Amtrak is better but it goes to Philly only. Dad offered last night to drive me from Pittsburgh to A-town. If you will remember, he had originally offered me this when I was set to be with my Dad-Pam for a month, so that I could do Prosody. Now Mike is not sure he can go because of some work-shit that imploded, and my dad will probably no longer be able to take me from Pittsburgh to A-town because of some of HIS work shit that exploded.

Which... disappointing.

But then he said something. He's got to always say something, right? So when I was relating to him how .... brain fog. I just lost my thought. Real time Meds In Action.

So when I was relating to him how Mike might not be able to come he was like, "I want Mike too. I mean it's going to be all couples there. You'll probably feel like a third wheel or something."

REALLY?

Actually what I wanted was to be with my family in the relaxing ocean atmosphere, and the doc even said I could go in the ocean b/c the spots were all closed-over. And I wanted to walk on the boardwalk and buy cute beachy clothes even if I couldn't do it with my husband. And I wanted some time to decompress with my family. Especially more time with stepgoddess Pam. I don't think I can ever have enough time with her. She is like, nurturing to the nth power.

But I don't want to be a third wheel. And what's more, without the sighted-guide of my husband, I'll have to use my cane. And I wouldn't want to attract undue attention with my cane and make the whole family feel uncomfortable.

I know that last bit is taking it out of context. That's not what he said. But. I. I.

I need to go have lunch with Jenn now. God bless Jenn. And all you bloggerinos for reading and sending me good energies. I <3 u.

Clarification

So I'm back in Pgh for a week, then, AFAIK, off to the shore with my dad & stepfamily for a BADLY NEEDED vacation.

I just wanted to clarify one thing in my last post that, upon rereading, I realized it would not make sense for the general blog audience. Some friends i have been telling more than others. And family knows all these details too but some people don't.

I wanted to clarify the part where I was talking about choices and emotionally toxic environments. It was in the last few lines of my post.

1) I said "my mom made her choice." What I mean by that is her choice to refuse treatment for a medical condition that is not (I hate this word) "terminal." I have very mixed feelings about this. On one hand, I think it's important to have autonomy and to be allowed to pass with dignity.

On the other hand, I know my mom has had depression, which she has refused to be diagnosed with (meaning she did not accept the diagnosis and take meds for it, nor did she engage in serious talk therapy for the length of time where it would have lasting beneficial power) for quite a long time, maybe since I was a teenager. Her untreated depression has impacted her ability to get along with family members, to make sound decisions BEFORE this all came to a head, and to make friends, which, besides just the fact that friends are great (thank you friends of Jill!), would increase her support network in times of crisis.

Also, living in the environment she has chosen, a very rural town with pretty good-but-not-the-quality-of-urban medical care (i.e. needing to be driven hours to get certain procedures done, perceived burden on support network) is another factor. I'm not sure how much it has influenced her decision.

Providing an environment where people with chronic illness can have a good quality of life, even if they are poor, is a societal issue that needs to be fixed before I can accept that "right to die" is more good than bad.

I DON'T MEAN TO ELICIT A DISCUSSION OF GENERAL RIGHT-TO-DIE ISSUES WITH THIS BLOG POST AS I CANNOT HANDLE IT AT THIS TIME.

2) I said something else in my previous post about emotionally toxic environments. Even though I have suffered XXXXXXXX SURVIVED childhood abuse from my mother, I don't mean that her sickness alone has created an emotionally toxic environment for this particular trip to GA. What I mean is, SOMEONE had made the decision to keep the severity of her illness from my Gran, who lives in the same house and has age-related dementia.

Which means if it were just me and my mom and my aunt and uncle on this trip, I think, although it's a horrible circumstance, I could have stayed the whole time w/o having... shall we say... a nervous breakdown and having to leave a day early. It's the fact that I had to keep my emotions from my Gran, and thus from the environment in general, that really drove me over the edge. I don't know whose decision this was, but I still don't think it's the right one. I *do* know that my family on the maternal side has been all about preserving secrets that would have been somehow controversial or upsetting to certain family members.

Here's a fairly benign example. My other aunt was a Catholic school teacher. She *loved* her job. My grandfather (who was pretty much tyrannical) railed at her all the time because teaching at a Catholic school did not make enough money as would, say, teaching at a public school. Or [insert another business-type job that would make more money].

Like I said, my aunt loved her kids, where she was teaching, etc. I don't know how much of this decision was to appease my grandfather or what, but she got a job as an insurance claims processor. She tried at that job for awhile, but HATED it. She wanted to go back to teaching. So she did. BUTBUTBUT we were not allowed to tell my grandfather that she went back to teaching. This lie lasted years and years and years. Until the day he passed, my grandfather thought my aunt was an insurance claims processor, or some other job that was NOT a teacher.

There have been less benign family secrets than the one about my aunt and her teaching, but they are not appropriate for a blog available to the entire internet. I believe, however, that preserving secrets is like allowing sores to fester and become infected. Sooner or later the secret will come out and when it does, it will be far worse than if it came out earlier.

Weird stuff that happened this week.

Okay, the post to fulfill that title would take up volumes, but here's a list. You know I like lists. These are in no particular order.

1. I learned that my Gran has serious age-related dementia. She is 93.

2. Gran cornered me (she is good at this, for she operates a walker and it adds like 2x to her personal space) in the doorway of my guest room, just freaking out with anxiety b/c she knows something is wrong with my mom but THE FAMILY HAS DECIDED TO KEEP HER IN THE DARK and I had to pretty much lie to her (is how I saw it) about the situation. This happened several times. I had to leave GA a half-day early. This was to make my goodbye constructive and decent for my mom, so that I would not leave a trail of psychological carnage and salted earth behind me. My family has never told the truth. I had years of therapy to untwist my brain. They were pushing me back in that direction.

3. I saw a woman on the plane wearing an ombré hijab. It went from pale blue the top of her head to dark green to dark blue. I remember when I was working at DU, how I thought those corn-fed preppies had nothing on the Muslim girls when it came to pure glamour. They worked it. I don't know I feel about ombré as a trend, but maybe I will end up picking up a piece or two. It's better than neon. I tried to find a picture but they wouldn't load so if you want to look some gorgeous ombré hijabs you can see them here.

4. My cats welcomed me home last night and are now installed in each of my pockets. They are all like "mow!" and "mew!" and "we love you" and "pls dnt lv us we <3 are hoo-manz!"

5. Sadly for them, we are staying in the hotel the next few nights so I can get my stuff together for the Prosody taping on Saturday. Mike said it would be good b/c I was having more bug freak-outs at my mom's. They have ants. Which brings me to #6...

6. I asked my husband to check my body over for ants. Which I was pretty sure were there but maybe not. So you see OCD, still rolling strong. It has not kicked in yet because a) I'm pretty sure those things on my legs are hives created by stress and overheating and b) I'm chock-full of nice meds from therapist N, who has really be helping me through all this.

7. I saw my husband step up like he has never stepped up before, dealing with family members, making flight arrangements, making sure I got back to a safe environment. When he could have INSTEAD been like "well, we're leaving tomorrow so suck it up." Then again, this is the guy who waited with me in the psych hospital ER (this was like 15 years ago? more?) for ten hours to protect my fragile emotional state from the detoxers and peeps that had gone off their meds who were sort of violent or just weirdly twitchy. I love him, I love him, I love him. If you work with him or are his friend, give him a hug; give him a break. He's been through a lot helping me get through this stuff with my mom.

Just a PS for casual readers of my blog who don't know me very well. My mental illness has been stable for many many years. This is a serious break b/c of all the SHITE that has happened at once.

PPS to my friends who have helped out with Team Cat and everyone who has just sent their well-wishes, prayers, and healing energies, thank you. You really are my extended family, and I love you. My mom has made her choice. Now I've made mine. To live well. To celebrate life, and friends, and creativity. To attempt a removal of the emotionally toxic elements in my environment.

PPPS: I have to go b/c Ruskin has just knocked my books & crap off my desk with his big butt. This is a sign that he wants Second Breakfast and will not be denied.

<3 <3 <3
Jyl