home again home again

My mother, at the tender age of 65, has discovered the blogosphere. The woman couldn't tell you what a USB cable is to save her life, but she can tell you the names of all the influential political blogs out there. She still double-clicks everything, doesn't know what an online "link" is, how to change any preferences... and so on, but she seems to be able to navigate the blogosphere quite well, thankyouverymuch.

She reminds me a little of myself when I was in elementary school. I would learn something new and talk about it incessantly because I was excited to have learned it and wanted to show off. Yes, I was/am a nerd. And my mother's behavior of late would indicate that it might be hereditary. I should start clocking her, seeing how many times she says blog* words in a day. *shakes head* Too funny sometimes.

Much as I love both my parents (they really are awesome people), being at home is kind of difficult. I don't really think of this as "home" anymore. My older sister is trying to convince me to stay here and go to school in-state, but a) I like the east coast, b) I couldn't survive that long back at home, and

c) (which is the most important one), I feel like a total failure for being back at home at all. I mean, yes I did have surgery in the middle of last semester. Then brain surgery over the winter break... But goddammit I know other people do that and still find the stamina to go back to school the next semester!

I have been vomiting every day for over two weeks. I never go anywhere. So I know it's a good thing I'm not a school... But I really, really wish I were.

*whine over for the evening* Sorry to whine, I'm having kind of a bad day and don't have anywhere else to vent.



part one

A perfect knowledge is
imperfected by your questioning.
With mere words, mere lines of thought, you’ve
hewn a gaping wound; Chasm that will harden
year to year, a cicatrix we
will not, cannot stumble on,
Our canes tap ever at the smoothness
between the rippled scales, rough-wrought monuments
to unknown time – An unpeculiar surface, in our
planar world.

part two

I saw once what I cannot see now,
waylaid by faithlessness.
Only a solarbright reversal of what has been
lingers among the shifting motes and beams,
to press me with its simmer-fading urgency.
Just beyond those holy burning borders
swim answers– in a sea too bright for eyes
so injured by the abrasive nature,
the malignant edges,
of questions ever supplicant.



My sister wanted (honestly) today to know if I have narcolepsy... AhaAHHHAaHahaha. Funny, but not really.

It's been so long since I have slept WELL at night.. you know, comfortable and not having awful dreams or getting up for an hour or two because something hurts.

Like so many other people who deal with chronic illness, I live my life in fragments strewn over a background of pain. There are occasional fragments of sleep, fragments of lunch or the grocery store or any number of normal things. But that background can drown a fragment whole, or jumble all the fragments that have been neatly laid out.

A couple of years ago I became frustrated because I was looking for a book on living with chronic illness. I have yet to find the book I was/am looking for...
So often I look at books and realize that, despite what they say on their jacket, they are not meant for me. They speak of people living with terrible, wrenching illness. But it is death that the books are talking about, and courage (or lack thereof) in the face of death – Not life.
There is nothing to be had in these books about hope in the face of life with ongoing illness. That is what I want to read. I want to understand how incurable illness impacts the way we live. Then perhaps I can write the book that seems to be missing for me.

Now if I could just sleep for one night...


deja vous all over again. but not.

I had a strange sense of jamais vous today as I was driving across town. It was a beautiful day; brilliantly sunny, clear, and cold. Suddenly, as I approached a red light, everything before me seemed to expand. All of it new and unfamiliar. The road looked vast and open, as though I could go on for a thousand miles and never meet its end-- smooth sailing to Neverland. It looked like a new road, one that I had never laid eyes on before. Even the mountains before me seemed newly minted. The mountains that have stood over me in every direction from the day I was born.

All the things that define this place as my home were somehow tossed up in the air and juggled before me -- the mountains, the birch trees and alder brush, the roads I have known since day one, the hoar frost, magpies... All of it fresh and unfamiliar. In a way, perhaps, my mind let go of "home" in this stage of jamais vous. So many things that made this place mine seemed palpably detached from me.

It wasn't sad at the time, just incredibly strange. Like the motherland released me to my new habitat thousands of miles away. Bittersweet, I suppose, but strangely comforting at the same time.

I have no idea if this is coherent and/or comprehensible. But ah well... A warm bed and plenty of covers await me. In subzero weather that sounds especially nice. :)


Papaver somniferum

i seek oblivion.
palm to palm, skin to skin
with pain –
floating beside her
grey subjugates. we are buoyant
in this shoreless, hungry


aching for gravid
somnolence, exquisite
weight –
dreaming of desolate archipelagos,
poppy fields,
saltless waves in which to


I've been saving up, wanting to post something pithy and on-target about a pressing healthcare issue. This is not that post. Unfortunately, I feel like crap and can't concentrate long enough to be pithy and on-target.

Lumbar puncture #kazillion today... Opening pressure confirmed my suspicion, unfortunately: Broken shunt, somewhere. I have both ventriculoperitoneal and lumboperitoneal shunts, so now to ascertain both which shunt is messed up and where. Joy. I hate being right when it comes to these things.

Pain is corrosive... And having lived with unrelenting pain for almost four years now, I worry that I will become corroded. I worry that one day the disease will speak, instead of me. That my face will be the face of pain.

once again the spacing is off... GRRR. (and no, i do not use illicit drugs. nor do i condone the use of illicit drugs by others.)