Monday, December 31, 2012

Thinking about the new year...

Lots of people take stock in their new-year posts; I'm thinking about what's coming up. Soon I will be leaving group. It's inevitable. They said they want to discharge me in January. It's mondo-bizarro how these complete strangers have come to mean so much to me. Well, some more than others... and most of the "some" have already been discharged. So I can say I'm on the tail-end of what I consider my cadre: peers in age and stage. Which means I gotta get my ass out the door soon. But what next?

I was talking to A about a week or so ago and she suggested I "work with the energy of the solstice" (so yeah, it was around Dec 21) and consider, in a playful way, the concept of starting over new. She said it was important to consider it as mental play, not a serious undertaking. I didn't know what to make of her comment at first so I put it on the back burner.

During some idle time when I got home I turned it over in my mind. I could see why she said to not consider it seriously. I take everything seriously, perhaps too much so. When I thought seriously about it, I started to cry. So many things have just gouged the hell out of me in the last four months that the idea of starting over new is like... hello? I'm barely scarred over! Give me some time! But as a "pretend" question, it made me feel a bit liberated from my sadness.  I thought about last January, when I was starting my "year of quitting." I never imagined the ending it would have, or should I say, the last third of the year. Act 3. What if I started over on my year of quitting? [Note: I think my blog was on tumblr at this point so you might not know that I had sarcastically referred to taking a year to solely concentrate on writing, publishing, attending and giving readings as my year of quitting. Like quitting the job that sucked the life out of me for something that doesn't pay but is super-fulfilling.]

I remember now with great nostalgia the anxiety that, then, had made me cry. I was taking a huge leap of faith and I was doing it in the shittiest part of the year for taking leaps: winter. I had to fill a blank slate (woo, mixed metaphors) not knowing if my endeavor would be successful. One of my fb status updates at the time was "looking at design blogs and crying." Well, in my world, art begets art. I started myself on a disciplined schedule. I submitted every workday in the beginning --I would say the first 3-4 months. I kept up the momentum on faith, until the acceptances started coming in, validating my decision. I would say the best part was April through July. I was ON FIRE. I was so happy. I was so not prepared for what August would bring.

Now, despite my recent (and for the second time!) publication in MiPOesias, and upcoming pubs in RHINO, Hayden's, and Bone Bouquet, my submission pipeline is low. I feel like I don't have a lot of work to submit.

That feeling of having nothing may be false. It is false. I haven't been writing at the speed I was --I was generating 1-2 drafts A WEEK. For eight months. But I haven't published all of it. And I wrote a chapbook-sized sheaf of grieving poems, some of which have to be good enough to revise.

[Note: can you tell I've become worse at writing blog entries? It's my ability to concentrate. It's gone way down. I can't put together ideas as fluidly as before. Nor can I read a book all the way through. Or watch a whole movie without great restlessness. I don't watch them in the theatre any more-- at least for now. Therapist J says that this restlessness and lack of concentration is normal when experiencing grief. She also says it could go on for awhile.]

Anyway, I guess what I'm trying to say is even though I have great anxiety about "my year of starting over," I began "my year of quitting" also with great anxiety. And that time it was fruitful. I showed up and did the work and I was successful.

There's this little (actually it's not so little) voice, the anxiety voice, that says, you never knoooooowwwwww about the future. You might not be any good any more. Maybe you broke yourself. 

But I leapt before and it was good. Maybe I can do it again. I'm lucky to be in a financial position to try it. I don't have to go back to some thankless job. I can do YWI part-time and maybe everything will be okay. Not grand, but okay. I'm shooting for okay.

Tuesday, December 11, 2012

The Universe Box and Radical Acceptance

The day I walked into the room where my therapy sessions are held, the words RADICAL ACCEPTANCE were scribbled on the whiteboard in failing black marker. I dimly remembered this skill from last time (199something). There was something else written under it which my mind wants to paraphrase as "This really sucks right now but there's nothing I can do about it."

Easier seen on the whiteboard than taken into the heart and mind. A few days later, a fellow group member let me in on his idea for something called a God Box. You made a special box where you put thoughts and feelings that were just too big, overwhelming, too much for you to handle. The idea was to physically and metaphorically give up control to a higher power, who has the capacity to handle these things much better than you do.

This box works if you believe in any version of a higher power at all.... even if the higher power is just the best parts of your Self, not easily accessed --that strong core that has kept you alive thus far. I called mine the Universe Box because it suited me.

Here's a picture of the top of my box. I didn't have the energy to make the whole thing pretty but I did at least do the top.

That uneven black rectangle is the slot I cut where I put the thoughts. I made it small deliberately, so that I would have to fold up the pieces of paper REALLY TINY to get them in there. And I glued a nautilus to the front because I find them beautiful. It sort of looks like the thoughts might all be pouring into the mouth of the nautilus as well.

Here's more about radical acceptance. This is from the book, by Marsha Linehan, Skills Training Manual for Treating Borderline Personality Disorder (c) 1993. When I first did this therapy, they were only using it for borderlines, but docs and clinicians have since seen the value of using it as a therapy for bipolar, depression, eating disorders, anxiety disorders, and probably more than that.

Btw, if you google Marsha Linehan, the first thing that comes up is all these images of tees and sweatshirts from CafePress that say things like "Marsha Linehan is my homegirl." Not even kidding. Well, her therapy did save my life once, and now we're working on rescuing my sanity 17 years later.

Okay, so the ideas of radical acceptance, straight from "Distress Tolerance Handout 5: Basic Principles of Accepting Reality." There's two sub-sections I'm going to outline here. One is called Radical Acceptance. One is called Turning the Mind. These aren't my words. Please Marsha, don't sue me.

I do have lots of italicized notes though, like this one.

[NOTE: if you are reading this blog and you're pretty well-adjusted, you might think that the worksheet title is odd. You may not have trouble accepting your reality. You may even enjoy your reality most of the time. And for the times when you don't enjoy it, you may be doing things about it that are effectively helping your reality conform to the way you'd rather have it. That person was pretty much me, from about 1998 or so to August 9, 2012. I'm not saying I was super-sane or asymptomatic, but I was relatively good until the flea infestation that started off my downward spiral. Which I am planning on discussing in group today. Anyway, IF you have trouble accepting your reality because something SO world-rocking happened and you have limited or no control over it, then radical acceptance may be for you.]


  • Freedom from suffering requires ACCEPTANCE from deep within of what is. Let yourself go completely with what is. Let go of fighting reality.
  • ACCEPTANCE is the only way out of hell.  >>> I starred that one
  • Pain creates suffering only when you refuse to ACCEPT the pain.
  • Deciding to tolerate the moment is ACCEPTANCE. >>> with all the self-medicating I'm doing right now, I really want to work on this aspect some more
  • ACCEPTANCE is acknowledging what is.
  • To accept something is not the same as judging it good. >>> This one is very important to me. It means that even though my mom killed herself, I don't have to forgive her right now, or even seek my own emotional understanding of her motives. It just means I have to accept, for example, that there was no way I could fix her.

As I understand it, this means literally re-orienting your mind from a place where you are attached to the pain, where you ruminate and dwell on what-ifs and should-haves and whys --which, remember, you have no control over--to a place where you allow yourself to let go.

  • Acceptance of reality as it is requires an act of CHOICE. It is like coming to a fork in the road. You have to turn your mind towards the acceptance road and away from the "rejecting" reality road. >>> Note: rejecting reality is not the same as denial, although it might be. Rejecting could be, for example, going over a problem in your head that is past all help, but you can't stop dwelling on it. I just thought of Adam's t-shirt on Mythbusters that says "I reject your reality and substitute my own." I love that shirt. And it's fine in an imaginative sense, when you are engaging in acts of creativity, or when you need an escape, or if it's a joke printed on a shirt. Or if substituting one's own reality can actually produce a positive change. Damn, I love that show. I wonder if they had a new season when I wasn't paying attention.
  • You have to make an inner COMMITMENT to accept. >>> I find that if you believe in a higher power, it's really helpful to lean on that higher power to help you make the commitment. 

  • The COMMITMENT to accept does not itself equal acceptance. It just turns you toward the path. But it is the first step.
  • You have to turn your mind and commit to acceptance OVER and OVER and OVER again. Sometimes you have to make the commitment many times in the space of a few minutes. >>> I starred this one too. It's so important. I remember when I was in my first year of recovery from self-injury. I definitely had to re-commit every minute in some stressful circumstances. Because it's like your brain has carved these neurological pathways that tell you [insert destructive pattern here] is the only way, and it's not. My pathways for self-injury haven't caused me to act on them for 14 years, even though those neurons that say do it still fire. 
[end handout]

I hope that I can switch my neurons again. Before (in 199something) I felt it was the one pattern I had to work on. Don't self-injure. Don't self-injure. But now I feel like it's a bunch of smaller counterproductive patterns (erm, like a fear of leaving the house, e.g.) that I would like to mend, and it's all complicated by this grieving process that I know barely anything about. Except it's unpredictable, nonlinear, and it can take a long time. Woo hoo.

Monday, December 10, 2012

and stuff

I woke up at 4:10 this morning and couldn't turn off the thoughts. What could I have done to prevent her from doing what she did? I'mabaddaughterbaddaughterbaddaughter. Even though by now extensive therapizing has convinced me that this is not a fruitful path for my brain to go down. I folded up some thoughts and put them into the Universe Box but still could not go back to sleep.

My mother killed herself.

She sat on the couch for four weeks while she starved to death.

She would not allow anyone to intervene.

These things happened.

I need to say it. Because I can't believe it. Because it fucking blows my mind whenever I think about it or whenever I'm not thinking about it. For example, when I'm trying to sleep. I wonder if my aunt can sleep. I wonder if she's having nightmares. Or if she's put it behind her. I can't call. I can't email. They don't email me or call either even though they have my number / address. I probably wouldn't answer if they did call. I want to ask DO YOU FEEL THINGS ABOUT THIS? Because I feel things. I feel many things. I want to throw up just thinking about it. The holidays this year (Thanksgiving-birthday-Xmas) have sort of divided between happy moments and being a fucking sham. That is, I'm the sham. I shamble. I try to move and talk like a human. I make small talk. I come up with talking points in advance.

I went to a reading this weekend. I had to read a thing. And before and after I had to talk to people. It was short. It went well. Livingdeadgirl looks / acts so real.

It's a real wasteland in there. My brain is. Sometimes (like, all the time) I worry that there is no coming back from this.

I Want to Believe

Monday, December 3, 2012

surprise; it's another collage

[click to enlarge]

Rum Library Records

I keep giving you pictures b/c I can't give you any words.
Most of my doings are private and/or internal.
They're gonna let me out I bet in like 2-3 weeks.

Wednesday, November 21, 2012


Because who really cares about the crust anyway?

I heart pumpkin pie, the spicier the better. Often it is I who "insist" on making the pumpkin pie for a holiday dinner --in fact I am a control freak. I like my damn pie the way I make it. I have noticed the past few times though, that I had a LOT OF pie batter left over. Like I filled the two nine inch pie crusts to brimming and there was still over a dozen tiny crustless pumpkin pies' worth of material. 

In case you want to convert a whole recipes' worth, I estimate that you'd get about 36 tiny pies. 


Is found on the back of the Libby's pumpkin can, with a few modifications. In case you are not staring at a can of pumpkin filling, here is the recipe:

1 1/2 c sugar
1 tsp salt
2 tsp cinnamon
1 tsp ginger
1/2 tsp cloves 
4 large eggs
1 can (29 oz) of LIBBY'S (R) 100% Pure Pumpkin
2 cans (12 fl oz each) of CARNATION (R) evaporated milk
2 pie shells

Mix sugar/salt/spices together. Whisk eggs in large bowl. Stir in pumpkin and sugar-spice mixture. Gradually stir in evaporated milk. Pour pie into two shells. Bake at preheated 425 oven for 15 mins, then cut the temp to 350 for 40-50 mins or until a knife comes out clean. Cool for two hours. Serve immediately or refrigerate.

My modifications:
1) Double the spices.
2) Lessen the sugar by 1/4 cup.
4) Add nutmeg. Just shake it all around in there. Give the top of the batter a good sprinkling.
5) Add vanilla. Don't measure this either. Pour it in like you're topping off someone's drink.

So anyway like I said, I realized that even if I fill my two shells to capacity, there was a lot of potential pumpkin custard left over in the bowl. So:

Line a muffin tin with baking cups. Ladle batter into cups until they are full but not brimming.

Bake tiny pies with regular sized pies, exactly the same temps. I put mine on the bottom rack and they turned out fine. Cool for two hours and then refrigerate. 

For any of you who follow this blog and know what my situation is right now, you should know that being mentally together enough to make tray-loads of pie amazes me. Baking is a joyous thing. I didn't know that I could rise to the occasion.


Last year when I tested this idea, half the tiny pies turned out tasty but how shall we say, aesthetically lacking. This was because I had to scrape them out of the Calphalon baking pan. I did not use baking cups. I didn't want the rippled edges. But I had not realized the wonderfully adhesive quality of caramelized custard. 
I'd had to call my mom. She'd told me (duh) use baking cups or parchment and how long to cook them for. 
I didn't remember how long, for this year. I had to keep testing them. Whatever she said, I hadn't written it down.

Thursday, November 1, 2012

Happy anniversary to me

Today 11/1 is my fourteenth anniversary for being in recovery from self-injury. This past year, well okay, these past few months have been the hardest... I won't say in fourteen years b/c that first year was rough as hell but certainly in the past seven years.

There's this artist that I really like whose name is Kimya Dawson. She got a little pop of notoriety when they used songs of hers for the soundtrack of the movie Juno, which is when I found out about her. I can't really describe her style, just to say that she's amazing and other people have used labels like "anti-folk" and "freak-folk" so there you go.

Last night when I was journaling I can't remember what gave me the association but I thought hm what's she up to lately and re-checked her out. Apparently she released an album last year with this great song on it, "Walk Like Thunder." I listened on YouTube this morning. Talk about serendipity or fortuitousness or the universe giving you the thing you need at the right time.

I found two links, a studio version which has a cool pic of the tattoo she references in the song, and honestly the quality is better, but the other version I found was a live one at a bar in Pittsburgh (!)-- I hope she comes around again on her tour this / next year. I'm giving you the live one b/c the energy is there and you get to see real people and real faces and emotion even though it's less polished.

The reason this song is important to me today is b/c I realized yesterday when I was talking to A that this grief I'm carrying around --I can't stop and wait for it to be over. I have to somehow start getting on with my life, my work, again. I need to go to readings and hear people. I need to go to open mics again. I need to submit more stuff. I feel like I'm on the cusp of figuring out how exactly to do that. Like emotionally, how to do that. There's no way I can sort out all the strands of this giant clusterfuck that was dropped on me and THEN get back to my endeavors. They will have to happen at the same time. Yesterday I was like, I have no idea... just NO IDEA how to do that. This morning I heard the song and I felt like maaaaaaybe I could build a little bridge between here and there.

So listen to it dammit! If you can't spare the whole eight minutes, at least listen to half. It's really good.

Clicky click.

Monday, October 29, 2012

Mad Science

The night after our Halloween party it was calm enough to take pictures. I turned on all the electrical features in the dining room and turned off the lights. It was peaceful, ethereal. More pictures to come.

Click to enlarge.


Filament 1

Filament 2

Tesla 1

Friday, October 19, 2012

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:


Thursday, October 18, 2012

Another box arrived yesterday

And it was packed with photos of my mother, yearbook, diploma, photos of me, a baby, in her lap. My grandfather rolling on the lawn with her childhood dog, Tramp. Envelopes stuffed with photos I haven't even opened yet. And at the bottom of the box, another box marked priority mail. I didn't untape it. In fact, I was expecting visitors so I taped the whole box up. There are enough photos there for two scrapbooks. One about me, and one about my mother.

We don't really do as many photo albums on paper anymore. But these photos are aging. One day they will be old. I want them preserved, not shoved in falling-apart packets.

I remember the family clamoring for wedding pictures. Just one picture. I was late on getting them out. Their claims were more than justified since we had eloped. I remember I was stressed about sending those pictures, but can't remember why, perhaps because that stress doesn't even compare to this one. In the box from Georgia was a slim album labeled PHOTOGRAPHS (sans-serif, small caps, stamped on black leather) and I thought oh what a cute album with the retro cover and I opened it and there were the wedding pictures I sent my mother.

memymothermemymothermemymothermemymother memymothermemymothermemymothermemymother

I remember the anxiety of picking them out. How much I wanted to share, how much to keep. Was that the year she disinvited me for Thanksgiving? Our relationship was complicated is what I tell people. It doesn't even begin to crest the issue.

So the box is in the middle of my living room floor. Mike asked me if I wanted him to take it to the attic. I said no because if it gets moved to the attic I will never deal with what's inside because it's overwhelming. And I bet if I asked N right now she would say that putting together those scrapbooks would be one way of dealing with my grief in a healthy manner unlike REDACTED

But it's in the middle of the floor now and here are some completely unrelated pictures. These are part of the southside series I've been posting lately.


Three Fingers

Monday, October 15, 2012

The good news and bad news about this jambalaya

(Yes, this jambalaya)

is that 
1) it weighs ten pounds. And I never measure or write anything down. Or follow recipes really, unless I'm baking. Thus:
2) You will have it for a week.
3) And then you will never taste it again.

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-


But here's also some pictures:


Lamb Shank

Sunday, October 14, 2012

Playing with washes of light

I've been feeling like words are not quite saying what I want them to lately. So you get some images instead.


No Parking Bus Stop

Tattoo &

Friday, October 12, 2012


Today with the assistance of my friend K I am going to the Bereavement Center to see about, well, grieving and how to do it. Part of me feels like omg, the last thing I need is another f-ing therapist. But they also have support groups which may be helpful. I've had positive experiences with group therapy before, so I'm cautiously optimistic about it.

Among the many sympathy cards I've received (thank you, btw, even though it is really difficult to open them) workshop-mate DK sent a note that included the following line: I don't think anything really prepares us for losing our parents, but I am especially sorry that you have suffered this loss while you are still so young.

I really appreciated that thought. Because I feel I am too young to deal with this loss, but I'm not a child, and so I don't have the family all around me and the more structured and supported grieving that a child (ideally) would have.

[Aside: Stepgoddess Pam has recently left me two voicemails which I haven't responded. She says in each one, if you feel like talking.... I don't. But I love her. After the ashes arrived I regressed somehow back into myself. If you are reading this Pam I know you're there.]

Of course I feel like magically "older" women who lose their moms must have some grain of life experience that fortifies them for it, but that's probably not the case. My mom was 66 when she died. I feel like that's the age you're "supposed" to be when you lose your parents. 66 means you've had a lot of stuff happen in your life and probably learned how to get through a crisis or two.

I'm not saying I haven't had crises, but as far as stress goes, this situation and its surrounding weirdness equal, in stress, what happened when I was 17 years old, when my dad found out about my self-injury and moved me out of my mom's house into his apartment and I finally got diagnosed with OCD and could leave the house without breaking apart. Or when I was 20 and breaking it off with my psycho abusive boyfriend of five years. Those were times when I crossed from this reality into a border area between what's real for everyone else and what was real for me... a world so decorated with pain. Pain dripped from every aspect of the landscape. Gory, lonely, boring, crazy-making. I was so utterly crazy that I was actually bored by how crazy I was. Time stopped moving. There were people around, but I was completely alone in it.

My stylist told me I was losing my hair. From stress. But she also said it had started to grow back. Yay for growing back. Then I got all of it chopped off so I now have a little pixie with long bangs and pink extensions. It's breast cancer awareness month, you know. So pink. N said I "looked stunning" and "[she] liked my fluff."I guess that's a good description for the stuff on top off my head now. I had been calling it quills.

Here's another collage, International Correspondence (after Nick Bantock).

Wednesday, October 10, 2012

Exploring the fear response

One of the grieving responses that I have noticed, and consider rather strange and disabling, is my regression from a normal (well, okay, from my baseline) social anxiety to an extreme social anxiety. This I did not expect. 

Soon after I was diagnosed with fibro I started working with A. Our first project for me was how to develop the ability to take up more space in the world. My aura was small, infinitesimal. If you don't know / believe in auras, just imagine always feeling like you have to shrink / cringe away from every stimulus. As a walker / rider-of-buses, I'm constantly exposed during my commutes. They have always been my trigger. These are situations where you don't volunteer to be with people, and you don't necessarily know how many people you're going to encounter or what their moods will be like on any given morning. We worked on this project for a long time, about a year, before I started noticing real improvement. It was worth it though. My fibro isn't as bad. I started to fall down less, and this was before I was using the white cane. 

My decision to use the white cane came in April of last year. It was at what I consider the apex of my ability to take up space in the world, when I made this decision. Everyone looks at me. Not menacingly, but with curiosity. In my neighborhood, the south side slopes / flats, people's social boundaries are more blurry. They want to ask questions... which is okay I guess... but the thing that really triggers my social anxiety is when they (especially men; mostly it is men who do this) insist on helping me when I don't need help. It makes me feel overly scrutinized and rather incompetent. If you've been reading my blog all along, you know this and the struggle I have worked on to desensitize myself to these feelings and the anxiety they provoke in me. 

The choice is desensitization or I never leave my house.

I was really starting to get ahold of myself there... for about two weeks. My anger levels were really starting to go down. My anxiety was starting to revert to baseline as well, the baseline I had established after working with A.

Then my mom passed away and I've noticed as part of my grieving that the social anxiety is once again off the charts. It's sort of hit agoraphobic levels. Some days I don't make it out of the house. Part of the anxiety is knowing I will be out there, with the cane, and the resulting interrogations / micromanagement of strangers. But I don't want to stop using the cane now, even though it would get me out of the house more. Some reasons: safety. I fall down less. Cars and people give me a wider berth. Also, integration of my identity. Meaning, it was hard enough to pull the cane out full-time. Going backwards would mean I'd put a tear in my identity and have to reintegrate all over again. Lastly, I'm worried about being accused as a faker. I've read on some blind blogs that people with low vision are / were / have been accused of "faking" blindness b/c they can appear to "see" yet use the white cane. I'm worried about the bus drivers' opinions of me. That they will think I'm faking to get a seat or something.

Now if you are thinking f those bus drivers; don't worry about what they think... If I could do that, then I would already have less of a problem. I wish I could not care.... so much of my values involve not caring about what others think and doing what I want / feel is the right thing. It's just that right now, I'm having a problem not caring. I was doing well.... and now I'm just regressing and frustrated about it. Thanks for reading :)

Monday, October 8, 2012

ashes and angels

My mom's ashes arrived on Saturday, in a cube-shaped USPS Priority Mail box. Mike said he wished they had sent with a signature required b/c it was just left on the porch. I said I was glad they didn't ask for a signature because it's hard to be home to sign for something. I left it on the mail table until Sunday morning even though I could tell what was in there by the shape of the box and the return address.

Early Sunday, before coffee because lots of times when you do things before coffee they hurt less, I took the box to the attic and opened it. And then spend several minutes carefully picking the packing peanuts off and securing them away from the cats. She was packed in an envelope, with newspaper all around. The urn is beautiful. It's green and gold with a shamrock on it. Funny, she was not irish, but her name was. Kathleen Rose. I keep having to correct verb tenses from is to was. I guess a lot of people wanted some of her, because the urn is also tiny. Mike said, I heard that people don't actually come out to be a lot [of ashes]. But I remember Juno's ashes as being pretty significant and she was only like 9-10 pounds.

I feel a compulsion to go over and open the Juno box to heft her ashes.

I ignore the compulsion.

Anyway, mom went back in the shipping box for now so cats won't disturb her. The shrine isn't ready by a long ways.

I had a collage challenge for which the prompt was ANGEL. Here is what came out.

Friday, October 5, 2012


My mother passed away two weeks ago today. I can still hardly believe it. I've been trying so hard to escape my brain, to let the feelings out slowly. Truly, I am a bit scared of my feelings. Amidst my frantic attempts at escape, N says sometimes I will just have to "sit up with it." It meaning, I suppose, the feelings.

Wednesday, October 3, 2012

Trying to climb out of my sad hole

This morning I woke up with extra sadness. I'm trying like crazy to distract myself with anything, anything. So many crafts, so many poems. The poems are harder, but worth it. I'm going to have new publication news soon.

Halloween is a good distraction. We are throwing a party but I'm really out of the game AFA party-throwing. I think Steph made a facebook event or something but I don't know how to find it or invite people. Pumpkin carving. Mulled cider. Candy. Send me email.

Tasks with too many steps overwhelm me.

Sorry that I'm being really self-absorbed right now. I probably have not visited your Facebook / blog as often as you have visited mine.

Thank you for the sympathy cards, messages, and sweet friend-stuff you've sent. If you didn't send, don't worry about it. The sympathy cards are a double-edged... thing-with-edges.

I keep going out to do stuff and then getting some of the stuff accomplished and then having anxiety attacks which necessitate my return home by slow painful bus ride.

It's worse at night. Meaning, events scheduled in the evening are still too hard for some reason.

Evenings are hard period.

Jenn is helping with many offers of low-key of visitation. Meaning I get to go to her house and do nothing and it's during the day so I don't freak out so much. And she keeps offering so I don't forget to come over. Or sometimes it's lunch. Which also has structural parts. Order. Eat. Talk. Eat more.

I've mostly had anger and anxiety, but the sadness is starting.

I've been working out more to try and maintain my good weight despite an overlove, right now, of sweetness. I'm talking about eating nutella out of the jar. I wish I hadn't bought that. If anyone has ideas for better indulgences, please message or comment. Carrot sticks and apples do not count.

I think I will invent and diagram the dodecahedronal stages of grief.

It's the edges one needs to be wary of, not so much the planes.

Monday, October 1, 2012


I got back from GA on Saturday. The service was okay. Even though I was raised Catholic, I am intimidated by churches. Especially southern churches. I feel that their participants are a moment away from bursting out with themes of punishment and hellfire. 

I did end up delivering the eulogy, which a lot of people gave me praise for. It ended up being a slightly bigger deal than I thought... I thought there would be several speakers, but I was the only one. The minister was like, And now Jill Khoury will speak on behalf of the family. And I thought, actually, I'm just speaking on behalf of me. The family did not approve this message beforehand... this could end up going badly. But it didn't. 

I spoke from the heart and didn't tell any lies. So there.

And now, after it's all over... 

...I'm sort of trudging along. Things seem possible, doable, one moment, and overwhelming the next. I told Mike that I was gonna go to a workshop this evening and he said it was good to get back into the swing of things. And now, after having a 20-30 minute interaction with someone who asked detailed questions about the aftermath of my mom's death / the service, I feel totally drained…. like I can barely make it to therapy and then meet a friend for lunch.

So I don't know if I'll get a second wind this afternoon and end up workshopping… Apparently my mom left me a note to read after she passed and gave it to my aunt, who gave it to Mike, who gave it to me this morning. I'm saving it for my therapy session to open it. Apparently she enclosed it in a book called Heaven Is for Real, which I'm like….. oh crap. What is this?! I'm not sure what I believe re: heaven / hell, but don't leave me a book with a title that seems like it wants to instruct me eschatologically on what is and what is not. 

I feel bad for having missed the past several workshops and I have lots of poems to workshop. 

I just want to crawl into bed now though. 

This morning I looked up how to respond to sympathy cards on the internet. Rather, I looked up, on the internet, how to respond to sympathy cards. Apparently some people say you don't have to send thankyou cards and some people say you do. I was going to make it into a sort of therapeutic crafting by handmaking my thank you cards. Now I'm looking at the cards I made and thinking these are too bright and colorful. They're totally wrong. Fuck this. Do I make new cards? Do I even bother? Do I go back to bed and not get out? Option C is looking appealing.

And wtf is in that note my mom left for me?!?! I thought we really said all we had to say and left it on a good note. Now she ends up having the last word, whatever it is.

Thursday, September 27, 2012

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.

Monday, September 24, 2012

Sigh. #$#$%%^&&*^!!!

I cut my left pinky finger this morning making another scarf and it wouldn't stop bleeding. I have this big dumb bandage on it that makes it hard to type a, left shift, q, w, z. I keep hitting caps lock. Once I hit a mysterious key combination that almost deleted a draft email.

I sent out a submission this morning despite the typing. It's for an anthology whose cause is very important to me. I meant to get it out sooner but with all the stuff going on... I didn't. Now I feel like I have almost zero chance of acceptance b/c of 9/30 deadline coming so close.

There are so many a's.

I want to slap Ruskin. He is being such a loudmouthed bully about food this morning. I curtailed it (the slap) at the last minute and shoved his face, gently, away.

I'm so tired. I have more to say but my hand hurts & I'm impatient with the slow muddled typing when usually I'm so fast.

There are so many emotions.

Friday, September 21, 2012


... my mom passed away a little after 5pm today.

It's what she wanted.

But it sucks. It's not what I wanted. I guess that's kind of obvious.

That is all.

How am I doing

So in the middle of all this mom stuff, friends are asking me how are you doing? And I don't really have a good answer for them. I'm working my recovery program. I am alive. I made a tshirt scarf and some cute jewelry this morning to take my mind off stuff. But then this afternoon I wanted to go to Writer's Cafe and I was getting ready and smacked my head on something (aGAIN) and realized that there was no way I could go out today and blend in like a normal person.

Mom was responsive last night though she couldn't talk. Today she is unresponsive and has a fever. They don't have her intubated. I assuming that she couldn't talk because... well... yeah. Okay so they're gonna move her to the hospice care floor soon. I know she didn't want to be in this situation, to go in a hospital. But I think at a point, I guess you just lose control of what happens to you.

K asked me to post pix of the scarf when I was done. So here they are. It's super comfy for the transitional weather we've been having. Lovely and cool but then verging on warm in the afternoon.

Mom update

So my mother is still with us, AFAIK. My Aunt S (mom's sister) flew in last night. I hope she was able to get a snippet of lucid mom. If I were them (Aunt D and Uncle J) I would ask my Aunt S to take care of my grandmother, who at 93 has dementia, and just recently (even thought hey were living in the same house) learned of the seriousness of mom's condition.

Although I bet they left out the part where she's refusing treatment. I guess I might leave out that part too, at this point.

Aunt S and Gran are closer than Aunt S and mom. And I bet Uncle J needs a rest or, conversely, to go to work.

Mom is refusing all treatment, except for pain meds and benzos (which I don't know if she knows she's getting)... which calm her down and suppress the gag reflex. Like I mentioned before it took them two days to convince her to even go to the hospital even when she was throwing up blood.

She even refused the endoscope. I thought maybe she would at least let them do that procedure, because it can't be comfortable having a bleed in your stomach. And I'm guessing (I do so much guessing, with this situation) that the docs can't tell if she's still bleeding internally because she refuses the damn endoscope.

I told Mike Aunt D said mom said she doesn't want tubes anywhere.

[[I'm guessing, again, that IVs don't count. Which is more guessing, which I'm frustrated by because if I were there I would know names, dosages, methods of delivery, how often... knowing facts is one way I cope.]]

Mike said ... but sometimes tubes bring good things.

True that. I don't think mom wants any good things though, besides being comfortable.

Aunt D mentioned that mom was no longer taking any fluids except sips of water, very occasionally. But again, I don't know if they are hydrating her via IV or not. I would hope so. I really think the dehydration route to death is inhumane... though it's done commonly.

I asked Aunt D if I should go down there. I wanted guidance, any viewpoint. I have really no experience with this and it's such a weird and complicated situation. I feel like Aunt D is holding together all these people who wouldn't normally hold themselves together.

Aunt D said that she did not know if I would make it in time, and that it was okay for me to keep the really good memory of seeing my mom when I did, of saying goodbye when I did.

I was so grateful for that. Just... for someone to tell me what to do, for someone to tell me it was okay to preserve the memory that I have of her.

Once, a few years ago, when there was something else up with my mom --which is the only reason my Aunt S and I talk --I told my Aunt S. This family, like rats from a sinking ship. She didn't deny it, but I think she was a little shocked that I said it.

N expressed some raised eyebrows that my Aunt S. hadn't called me --throughout this entire process --to see how I was doing. I said that I was really okay with that, that I didn't want to talk to her, that we don't normally talk, that talking to her would be overwhelming, and that I'd see her at the service.

Aunt S is a devout Catholic. I wonder if mom told her the part where she's refusing treatment.

N seemed... not surprised exactly at my response because she knows this family, how they are. How we are. I fully implicate myself in our disconnection.

I asked Aunt D to call me when mom had a lucid moment so I could talk to her for just thirty seconds, which she did. As soon as I feel it's reasonable, time-wise, I'm going to text again and ask her the same thing for today if possible.

Yesterday when I talked to mom for a moment, she was sort of in-and-out. She tried to say I love you, over and over again, but it wasn't quite coming. Like she was in a fitful sleep and sleeptalking.

Aunt D got on the phone and said, I want you to know she's trying to say I love you. I'd figured it out. Or else, it didn't matter. If we're beyond language, that's okay. Hearing her voice in any capacity... I just needed to. I hope I can hear it again before she goes.

Thursday, September 20, 2012

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]

Wednesday, September 19, 2012

In the middle of something

My uncle emailed Mike to let him know that my mom has been throwing up small amounts of blood for the last two days and they finally convinced her to go to an ER to get it looked at. They think she now has a bleeding ulcer. N says I'm barred from looking up anything on the internet dealing with fleas or my mom's condition, so I had Mike look it up and he said they can cauterize the bleeding with an endoscope, which they can do with twilight anesthesia. If that doesn't work, it's surgery, which she will most likely refuse.

I just keep thinking.....

.... but I'm not going to share what I'm thinking because I'm afraid of being judged. I'm judging myself already. I can't even believe this whole situation, Still. Apparently she's been "the same" since I left until now.

I said I wasn't going back there.

They've now informed my grandmother of how serious my mom's condition is.

Apparently that didn't go over so well.

As you might think it wouldn't.

I don't even know if any of them want to see me, including my mother. I think she has mixed feelings. I think the goodbye we had was a good one and I want to keep it that way.

Then the cat got a hairball and I flipped out. Internally. Everything is internal right now. I can't seem to ... I don't know. Finish this blog post, among other things.

I would ask you to pray, if you are the praying type, but I don't know what to pray for anyway. I guess I would say, for a peaceful transition for my mom. And some grace for the rest of us to get through this.

Monday, September 17, 2012

Where my poems at.

A few people have requested me to be more forthcoming about where my poems are currently published, providing links and such. Yeah, I can be a bit lackadaisical about that, so here's a blog post just with links to my stuff. Thanks, readers, for giving me the nudge.

My most recent pub, and one of my favorite ones this year, at Escape into Life. Rather than starting at my feature, you should really take some time, begin at the main page. The site is more than it seems on the surface. It has an amazing origin story and it's like a hybrid-art wonderland. Don't forget to check out the complete feature of Viktoria Sorochinski, the woman who took the photos my poems were paired with.

What I like about all of these journals is that they each are so different. I'm honored to be among such great company!

Menacing Hedge

Rufous City Review

The Shwibly
Thirteen Myna Birds (my work is no longer up and she doesn't do archives, but you should check out the journal anyway)

More coming in autumn and winter from Blood Lotus, Prick of the Spindle, right hand pointing, and RHINO.

Sunday, September 16, 2012

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?

Saturday, September 15, 2012

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.

Monday, September 10, 2012

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: 


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.