Sex, Mortality, Age, and Illness: I'm in my 30s

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Location: United States

It's everything I want to tell people when they make small talk and profound talk, but I often can't. Sickness, sex, and the process of dealing with aging parents feel unspeakable and sometimes unreachable, but they sure aren't here.

Sunday, February 05, 2006

I am SO outta here! Come with me.

Hi folks, I'll apologize in advance here that I can't create any paragraph breaks for you tonight in this post. Please bear with me on that. Remember I mentioned my dream of leaving Blogger and heading to the land of milk and honey, otherwise known as WordPress? I'M THERE, thanks to the brilliance and support of a friend who has done nothing but keep believing in me, even when I'm a whining shit. In one of my posts here, I explained that my life was outside the confines of the 9-5er life where the body does predictable things. Doctor appointments, labs, and medications are predictable in my life, so this is a life less convenient; ergo, the new Word Press version of this blog has the domain name and title of, and I call it ALLC for short. This Blogger incarnation will remain right here with all the posts that I have written up to this point (though maybe I will still juggle photos here, if I am obsessing that day). These "old" posts will be transferred to ALLC also, and soon the archive over at ALLC will be complete, except for some comments: unfortunately, some comments here at Blogger may not transfer to WordPress. If you want to see them, you'll have to come back here. In the meantime, you'll notice some quirks both here at SMAI and at ALLC, and if you keep seeing them, 'tis alright to let me know about them. I noticed that some of the posts here lost all paragraph breaks, as I mentioned, and I'll fix that bit by bit. There may be some other bits of technical weirdness, but I found they can often be corrected with the refresh button. And now... *drumroll* introducing.... A Life Less Convenient! [I'm jumping around, tap-dancing off stage-left, in case you were wondering.]

Saturday, February 04, 2006

If I ever get to be a parent in this lifetime...

No more please Originally uploaded by carlosluis.

This is a letter to an unborne child who might someday be mine...

Someday, I might be your mom – at least, I hope I will be. I’m sure as hell working on it and planning. You might be from my womb, or through an adoption, or through a surrogate pregnancy. I certainly don’t care, and maybe you will or won’t as you grow older – I’ll let you make that decision, I promise.

Like everything else in my life, you will come to me from my will as I change desire into reality. You won’t come to me by accident. I’ll never say “whoops” when I find out about you. Like everything else, I will plan and work and plod along for you, banging my head as I go through this and resorting to prayers in a universe I believe is godless, yet I will still emphatically call you my miracle once you arrive.

Having you – finding a way to have you - may well be the longest journey of my life, and you’re the destination against the tedious, seemingly endless horizon of ocean. No wonder people once thought the world was flat, and that they could sail off the planet into oblivion. If it meant I could have you, I would gladly risk losing my hold on the earth itself and plow headlong into the waves; in fact, that is often what I feel I am doing simply by allowing myself to want you, so I grab the oars anyhow and push until I feel my arms tearing from the shoulder.

I didn’t know that you would be one of the potential casualties of my diseases, but if I can get my three degrees and find meaningful work and rebuild all my muscles over these years while puking, screaming, and limping, then somehow, maybe, I can find a way to your beating heart through my beating heart. You are not lost to me yet.

My mother insisted that she knew me before I was borne, and this is how I now know you. I may not know how to communicate with you in the future, and I am sure there will be enough instances where you will hurt and betray me. You may even tell me you want to grow up to be an accountant or to write like a post-structuralist French intellectual; somehow I will forgive you for these slights and find a way to love you anyhow because you are you, and that, ultimately, is all I want for you. However, in all likelihood, I will make your favorite dinner but not your favorite dessert because of one of these slights, and you won’t push me about it, either, ‘cause yo’ momma didn’t raise you that way. Trust me on that.

I am afraid of bringing you into a world where SUVs are nearly guaranteed to kill people in a smaller car in a side-impact crash and where we wind up eating our own pesticides. I won’t know how to protect you from these things. You will wonder why I obsess over them and tell me to relax. Then you will have a munchkin who poops and pees and sets your mind on fire, and you’ll understand all of this rambling. Then you try to relax.

It kills me to know that after all my fighting for your existence in my life, I will someday surrender you to this world, but yes, I will set you free, even if I shatter into a million pieces in doing it. You will go through many relationships in your life, and I want you to know that is the best definition of love I have found: I will let you be you. I’ll try to live up to that even when I would prefer to poke my own eyes out slowly with a soup spoon. I will let you be you, and I'll stop being so selfish and making it about me.

Someday you may come home with a tattoo that you “forgot” to mention when you left the house. Just because I did the same thing doesn’t mean you should do it. Part of me will melt into a gelatinous, warbling puddle on the floor saying, your skin, your skin, oh your perfect skin, my perfect you, and then I will realize that some people need to make a certain mark to claim their place in the world – even if it’s imperfect, misguided, or regrettable. It didn’t stop your momma. Another part of me will look at your tat and then look at mine, and then silently -- and only in the farthest regions of my mind -- I will hold up my arms like goal posts and hiss, “SCORE!” because I will recognize myself in you, my most rebellious, free spirit in you. And then I will beg you to get it removed because I always want you to be perfect just as you are.

I can’t protect you from everything, but I can warn the bejesus out of you. Know that on some days, you will wake up with The Brown Touch, and you will readily swear that everything you touch will turn to crap. You will swear that you will never be right, and your world will never come together as well as everyone else’s. Things may not go well in your world for periods at a time for reasons neither you nor anyone else can explain nor forecast. You will know despondency, and as much as I want to save you from that inevitable rain, I can’t; even if I could, I wouldn’t save you from such hurts because they are your destiny, a very simple part of being human. They will teach you what you are and help you find beauty in other people. To “save” you would be to stultify you. I love you already, even now, too much for that.

Know that even if your bones are breaking, your will is made of steel, and your heart is your own. These are family traits. They will serve you well, but they will also probably be the root cause of the end of your First Great Love. Know that you’ll be fine, even despite yourself, because I promise that life will often make you your own worst enemy. That’s also a family trait, and I will love you through every minute of fighting yourself, of fighting me, and of fighting just to get it halfway right when you don't know what you're doing. I won’t leave you even if you leave me at these times. You are already part of my skin, my eyes, everything. I don’t know how it happened, but I don’t question it.

I know you’ll be afraid often, but you won’t come to me or tell me. Sometimes you will even be afraid of me, of my anger, of my disapproval, of the loss of my love. Know that you frighten me just as much, that the second you are no longer an aimless ovum and sperm but a unity that marks my future, the culmination of all this work and longing, you will scare the living shit out of me because I will be so happy, which means I could lose you, lose it all.

I am afraid that the world will look completely different to me once you are here, and that I will be so changed forever that I will no longer recognize who I am, and there will be you, only you, and somehow I will forget a life without you.

Know that I am ferociously trying to reach you, that you light my path often when I have to make decisions, and that I am impatient, but if you are at the end of the journey waiting for me, then I will come to you, and that will be home. This is the definition of hope I want you to have when you need it. Someday, if you ever make it here to earth and to me, you will.

If I can give you anything in a world where bullets and gun smoke have flown over my head in North Philadelphia and cars have caught on fire as I drove past, it is ever-burning hope, hope that is as real, palpable, firey, and even as scary as the violence that has touched my life and changed me into a different person. Even in a world with this ugliness, there is the possibility of redemption and grace, so I still want you and will work to have you here with me. That is why I write to you when you are no more than a draft in my head, and this letter is the only evidence of your would-be existence for your would-be mom.

Photo credit: "No More Please" by carlosluis on flickr (click on the photo for more of this artist's work). Permission obtained for use.

This post has been moved with the rest of this blog over to its new home at same topics, same approach, same blog, different location.

Thursday, February 02, 2006

Run it up the flagpole and seeeeee...

Aeryal Originally uploaded by Gulliver.

These writings have been an attempt to see who would respond and what the reaction would be. The blog has become an aerial to locate others and a weatherballon to see what would happen next.

I'm really pleased with the results since obviously, dealing with a body that misfires and misbehaves brings a certain level of grossness to the table in my everyday life and in my relationships. I didn't know what people would think.

I check my statistics for this site daily. I noticed that some people return fairly often - wanna say hello? I see hits from Windsor, CT, quite a bit (hi!); a few spots in Florida; more from Reston and Richmond, VA; some hits from across the state of NY; someone in New South Wales; and a scattering of hits from Mountainview, CA. Helloooooooooo!

Photo credit: "Aeryal" by Gulliver on flickr (click on photo for more of this artist's work). See more of his photos and collages at his website.

Friday, January 27, 2006


Originally uploaded by shadowplay.

It’s cold. This is an understatement.

This is the truth: I’m wearing three parkas, which makes it hard to write. The floor is cold enough that I’m standing on only one foot at a time before getting socks on my feet so I won’t touch the floor as much.

The heat has been off in my building since last evening around 4 p.m. I am refusing to shower this morning. While I should be getting clean for the day and scrubbing off sleep, I’m instead focused on trying to do a little work, not out of any ethic, but out of a desire to distract myself from my permanent state of goosebump.

At some point, I want to lower my shoulders from my ears and stop being hunched over. But I need heat for that.

The rheumatoid arthritis component of lupus + drafts of 30 degrees with a wind chill of 18 degrees = not a good match. I keep putting my knuckles in my mouth and sucking on them. It works.

Later today I head to the OB/GYN, and I’m actually looking forward to it because the table is heated.

Photo credit: Photo by shadowplay on flickr (click on photo for direct link and more work by this artist). His website is ShadowplayImages. Permission obtained for use.

Re-juggling, re-enacting, recycling, and so on

Hi folks, you might have noticed some changes in the order of the posts. I decided to research some copyright issues as I have come to love more and more. I want to stay on the absolute strongest side of caution regarding copyright issues. While every link for each photo was intact and properly linked, the two lines of credit under each photo did not appear in every browser. In some cases, I found they didn't load consistently with each loading of the page (it appears that font size might have something to do with it, but I'm not sure). I have not found that Wordpress has experienced these problems, but Blogger is certainly showing a bug here. That's not okay, so I changed each post (I'm still working through them) to include a credit at the bottom with some additional links to the photographer's professional site, blog, etc. This means that some readers may be seeing two separate credits on each post, but oh well. I think it's pretty cool to share the stuff I like, and if it brings business to someone else, even better. I am also erring on the side of caution and etiquette by going back to every person, Creative Commons License or not, to obtain permission for use, since sometimes not everyone is clear on what the "Blog This" button may mean to someone, myself included. It will mean some jumbling of the order of the blog. I might post some text while waiting on a permission for a new pic I want to use, but I figure it's worth it. I realize that this might be tedious for some regular readers here, but in the interest of the utmost fairness to the photographers, I think it's best. Final note on recycling: I trashed some posts that I didn't think were so good, and I removed some photos that didn't work or seemed forced or even irrelevant. Always a work in progress. This post may appear from time to time as I need to update readers on the renovation at this blog - please pardon any redundancy as a result.

Thursday, January 26, 2006

Things Jen Is Not Allowed To Do (Updated)

Pervert Originally uploaded by -Birdy-.
1. May not begin comments on people's flickr photos with the caveat, "Not to sound pervy, but..." 2. May not use the expression “Holy crap!” as an expression of gratitude when presented with professional kudos from colleagues and superiors. 3. May not indiscriminately talk like the Swedish chef (“Bjork, bjork, bjork, chickeeeeeen!”). 4. May not try to show the research staff at outpatient oncology my newest panties in front of other patients. a. Even if they ask. b. Even if they ask nicely. c. Even if I’m wearing the Barbie panties. 5. May not tweeze eyebrows when angry or under the influence of drugs. 6. May not engage in spontaneous discoing in my computer chair when other people are not sufficiently prepped. 7. May not try to dance in public like Peanuts characters. Especially if I want anyone to speak to me. 8. May not let everyone know how fabulous I smell more than once every hour. Even if do smell fabulous. 9. May not try to speak rationally with an AOL representative. Ever. 10. May not try to pretend that I won’t spill iced tea on myself when hyper (so far today, twice on me, once on the floor, once on my tushie cushion). 11. May not attempt cooking any dish that may be extremely flammable and not advisable for nine year-olds to attempt. May aim low. 12. May not try to change my shirt, brush my teeth, and dial the phone simultaneously in order to “multitask.” 13. May not construct paper clip shrines to the Flying Spaghetti Monster while under deadline. 14. May not believe I have been touched by His Noodly Appendage and must stop trying to "testify" about it. 15. May not try to taunt or manipulate staff with banana muffins (they taunt and manipulate back). 16. May not "perform research" at my desk by stuffing as many malted milkballs as I can into my mouth. 17. Must clean off malted milkball spewtum from my monitor as soon as possible (i.e., pre-crust), not when I feel, you know, "kinda inspired." Photo credit: "Pervert" by -Birdy- on flickr (click to see more of this artist's work). His blog is You Are a Cog. Permission obtained for use.

Wednesday, January 25, 2006

Baring it...the nude diaries, part one

gunnar runner Originally uploaded by fast boy.

Sometimes compliments are revealing. Sometimes the recipients are. Compliments on a particular day can often indicate more about what you are like on *other* days. Inhibited about my body I'm not, generally, as if my public declaration of boob joy and boob theatre weren't enough to tip you off. When my sister arrived on Christmas day, I greeted her in the living room. "You look beautiful!" she said. I hugged her. "You're all dressed up!" she continued. I looked at her. I was wearing a thermal shirt inside out and my pilled sweatpants with the faded wear marks on the ass. My puzzlement was obvious. "Well, I'm really not used to seeing you in clothes." It's true. I realized for the previous eight to nine months, my sis saw me in only a sports bra (refer to avatar) and minishorts. I am very comfy in them and wore the set as a uniform. Seeing how "real" clothes actually fit my body was a new experience for my sis. When I moved to an apartment in June, my sis was around for the whole thing. I walked around in my usual ensemble all around the complex, and it never occurred to me what anyone thought or how they reacted - including family. I have never been a fan of clothing. I am also a resolute naked sleeper. One perk is that people's expectations of you lower immensely, so that even inside-out thermals can get a rave response. The other perk is knowing who loves you anyhow.

Photo credit: "Gunnar Runner," by fast boy on flickr (click on photo for more of this artist's work). Permission obtained for use.

Things that go poot in the night

Troll Originally uploaded by CarlosBravo.

"Ew. Where's that smell coming from?" "Eggs. I'm making hard-boiled eggs. I'm trying to put on more muscle weight instead of being all Kate Moss-y. I’m sick of being skinny." "No, it's the Fart Gremlin." "It's eggs. Sulphurous goodness that they are. Lots of protein." "Fart Gremlin! Running loose and cropdusting all the way." “I have to eat these, ya know. Eggs are good stuff.” "That just means the Fart Gremlin has been set loose.” "Okay, okay, it's the Fart Gremlin."

Photo credit: "Troll" by CarlosBravo on flickr (click on photo for more work from this artist). Permission obtained for use.

Tuesday, January 17, 2006


more jello Originally uploaded by xetark.

I've been surreally suspended in Jello since veddy, veddy, veddy early on Monday morning. Not fresh Jello either, but the kind with a rubbery skin on it like a Nerf ball. Sunday: sleep oddly as needed during the day to deal with pain and fatigue. Indulge fits of productivity and be grateful as hell for them. Result: ready for bed at exactly 6:00 a.m. on Monday morning. Not perfect. Not the first time, either. Reality: wake up at 9:00 a.m. on Monday morning to drive to methotrexate shot. Hyper-consume caffeine, steroids, and Plaquenil in a huff before dodging to the car without a brush or comb ever greeting my hair. Yes, seriously, and can I get an "oh freakin' well"? My regular nurse says, "You look beautiful," anyhow. Stay wired through the afternoon. Crash, and consequently screw up my metabolism's expectation of its next 3 drugs. Feel my head start to pull and separate into a big bubble that trails like a helium balloon bobbing toward heaven. Tuesday: wobble, bobble, and generally splat and squish my way from bed to the kitchen for COFFEE, where my body simpered and tugged at me, "Ummmm, steroids? Now steroids? Can have steroids now? How about now?" I'm not quite connected to the world, and I have only hit one, exactly one, thing on my to-do list (oh, this isn't it). Knuckles and knees: no swelling, no redness. Nausea: not so awful, not fabulous, improving as I stuff down plain rice with a spoon, but really, it would go so much better with a plunger if only my jaw had full-extension hinges. Guess who has a bunch of writing she hasn't finished and even more laundry? Guess who will refuse to do all dishes today?

Photo credit: "More jello," by xetark on flickr (click on photo for direct link and more work by this artist). Permission obtained for use.

Saturday, January 14, 2006

Slobber Like a Pro

drool2 Originally uploaded by Perfecto Insecto.

No one wants to be in a position where people see them as a drooling freak. My reality is that I am sometimes freakishly drooling – in front of 40 law peers, an evaluator, and a camera, for all of posterity. Awwwwww, yeah! My response to bodily pain throughout law school, in particular, was to continue a longstanding tradition of literally gritting my teeth. I received what is called “injection therapy” or sometimes “injection surgery” over a period of nearly two months in order to manage what became a bad case of TMJ, complete with broken teeth that required intervention. At one point, the pain of the TMJ became just as unbearable as a tooth I wrecked during that flare, so I hit the pain meds. The next day, two things were happening: my appointment with an oral surgeon in the morning and a major presentation that evening in my sports law class. I called my group to let them know I very well might not show up for my portion of the presentation, but I would drop off somehow my handouts. I was sick from lupus and jaw pain, sick from painkillers, and sick from a doctor poking in my mouth with a instruments. I couldn’t stand the idea of not showing up and essentially admitting in public that before a major presentation, my body had punked out on me in another way, and I had "consented" to it by staying home. I can't stand this kind of failure. It is soul-crushing. I wondered if this truly was one of those times that I had to give into the realities of my complications. I realize and accept that there will be those inevitable moments of having to "take it easy" that are not about character but about body malfunctions. I don't, however, accept it gracefully.

I decided that I would figure out whether I should stay home or whether I should push…as I went along. I reminded myself that I could pull out at any moment if things nose-dived. I drove to school, my face swollen, in my suit. Right before I entered the room, I ran my hands over my body, checking for upturned hems and untucked edges. I glanced down briefly to see that there was a darkened spot, smaller than a dime, on my collar.

I had forgotten but suddenly remembered with a thud:

I. Was. Still. Drooling.

And then the full reality hit: In. Front. Of. People. I whispered to my group as we filed in: “I’m drooling.” You can file this line in the folder of statements that I thought I would never utter, including, "Do you believe I can still smell elephant poop on my leg?"

B., ever a gentleman, a Boy Scout, and a sweetheart, handed me an entire packet of tissues. “Do you want to go home?” J. asked. Yes, I wanted to go home, but the thought of not being there and even humiliating myself set my jaw further on edge against itself. My blazer would have to be cleaned for the drool as it was already – might as well sweat it up, too. And I did. I had put on baby powder as a means of absorbing the results of my jagged nerves. I can speak in front of groups; it’s been a professional necessity over several fields and jobs. However, I truly don’t like it most of the time, particularly in an evaluative setting when I am not feeling up to snuff, but that’s the transcendence right there: doing it anyhow. Regardless, my sweat output was beating my slobber output by about two parts to every one part. 'Twas a night of clear fluids - mostly...the powder had already turned to a wet, cement-like mixture, as if a first-grader smeared paste on my skin. My group was wonderfully supportive. I was the second person in our group to speak. By the time I had to stand before the room, the evaluator, and the CAMERA, I simply stated for all, bunched-up tissue in hand: “I’m coming from a dental procedure and experiencing some issues from that, so I’ll be pausing occasionally.” There was a weird energy in the room for a moment, and I charged into my speech, wiping all the way and swapping tissues as they became saturated. My material was decent to good. My delivery: adequate, possibly not bad. It accomplished the job. Was it an event where the evaluator came up to me afterward over refreshments to give me congrats on the performance, like other times? No, hell no. But he did come up to me afterwards and patted me on the shoulder for getting through. That was plenty.

I felt sticky and gooey all over by the time I came home and fell asleep that way.

Photo credit: "Drool 2" by Perfecto Insecto on flickr (click photo for more work by this artist). Permission obtained for use.


Keeper of thy Gems Originally uploaded by feastoffools.

Yesterday was yet another laundry day, except, unlike the photo, it was neither glittery nor fabulous. It sure as hell did not involve gold lame, though Miss Confuckinggeniality will admit to once owning a green metallic bra with a velour trim, and it was not the '80s. However, laundry did give me lots of comforting home-y smells. I'm not sure how three people can generate so much smelly stuff. I did two jumbo loads (one load for that washer equals two regular loads) and one regular load. That was three trash bags' worth of lugging. I'm not sure if we are very dirty or very clean. Laundry is, surprisingly, one of the soothing things in my life. There is immediate gratification as soon as you dump the clothes in: you *know* you are about to check something off the to-do list in 34 minutes. My other chore has been my renewed commitment to getting more veggies in my diet. I was warned in '98 to increase my consumption of green veggies, and I am, slowly, one chomp at a time. I don't approach this task as eating. I think of it like folding, sweeping, dusting, or chucking the garbage into the dumpster. It's merely a chore, not me against my stomach, or me against the green veggie, although I *am* against brussels sprouts. Intensely.

Photo credit: "Keeper of Thy Gems" by feastoffools on flickr (click on photo for more pictures by that artist). Pictured: Leslie Hall, interviewed on the Feast of Fools podcast at Permission obtained for use.

Wednesday, January 11, 2006


Originally uploaded by Arnold Pouteau's.

There's this fear that even though I am fully in the driver's seat of my life, I am left far, far behind everyone else, just waiting, and my car is going nowhere. My resume testifies to the slow, plodding achievements of my life so far, or rather all the things that the outside world would accept as achievements. The outside employment world may not care what it was like to learn to walk normally again after a major walker stint or to rehab my spine. Those aren't the things I have listed under "Projects" or "Skills." This is the reality of fatigue and hours spent sitting in medical settings: compromised productivity *at times*; adding hours to the work day to compensate for the time lost to medical things; or simply not working 12 hours in a day when that's exactly what I want. What if everyone is moving faster than I am? What if they are, in fact, leaving me in the dust? Is it a race? When I saw my neurologist and internist this week, we talked about the realities of not wanting to sleep so much and the ongoing battle of fatigue. Previously, another internist prescribed Inderal, but I stopped it after the first pill for several reasons, a strong contender being the resulting "sluggishness," as the doctor called it. That simply won't work. I am already in a battle with my white cells and drugs for energy. I get first crack at it as much and as often as possible. My doctors and I this week talked about ways of avoiding narcotics and other lethargy-inducing drugs. We thought of ways to use hormones and steroids. We found ways of allowing me to incorporate my mega-caffeine: "Why do you need all this caffeine? Is it just habit to keep taking it for hours?" "No, I need it. If I want to run on the same playground as the healthy kids, I have to be awake and go just as fast. I have to make results happen, just like them, and I have to invent ways of tricking and coaxing my body into letting me do that."

Photo credit: by Arnold Pouteau on flickr (click on photo for more work by this artist).

Monday, January 09, 2006

Pain Removal Machine

buddha gaggle Originally uploaded by Perfecto Insecto.

A thousand Buddhas meditating in my brain could not have stopped the heebie-jeebies crawling up my spine as I drove with Bobblehead to the neurologist. It wasn't just Philadelphia drivers that made my sphincter curl like an angry fist - though they helped. Are people morally opposed to the use of turn signals for reasons I don't know?

This Monday trip to the hospital (after just being there on Friday for methotrexate) starts with a premise . . . Blinding pain is unacceptable.

All the pain is unacceptable, technically, but I have to pick and choose where I will focus and what I will sacrifice to escape it. I am going to yet another doctor in another non-descript building to ask not for a solution but for options. For something.

I'm scared of what I'll hear, but I am counting my blessings even now: this neurologist already knows the deal is hit-and-barf, and that playing doctor is about detective work, not throwing pills at people to stave off a sense of impotency. While I may work from home and set my hours, I still have to make deadlines and produce, produce, produce. That is impossible when my body decides that IV narcotics are the only answer; not only do I miss precious time to screaming and puking, but the hours are also lost to hospital processing and being strung-out on whatever is pumped through my veins. Narcotics are no longer the answer. They lose their punch after too much exposure; like everything else, after a while, they are too tedious. Dilaudid, my former angel, is the biggest slack-ass bore. Even Kevin Federline at his grimiest with Dorito fingers would look competent and motivated next to its lackluster effort. Dilaudid and I have to break up.

Dilaudid: "Why leave? I'm trying my best."

Me: "I think I need to see other drugs."

Dilaudid: "But we've been together for years. You hussy, have you no sense of history?"

Me: "I've changed. You've changed. We have different needs and goals now. I'm not sure what we have in common besides my rusty veins."

Dilaudid: "I think we should give it another chance."

Me: "It's not you. It's me."

There, the death blow. I said it. We are so over. I can't ruin a project/commitment I have from now until March. I can't have my head implode into shattered brights lights as I hurl into paper *and* plastic bags (that's right, I can take them BOTH out) while someone is waiting for me in the lobby. I can't explain to them how neither my arms nor legs are working.

I gotta pull it off, disabled professional or not. I can't be afraid.

I have to make my options, if not solutions - again. That means being pro-active, so I went to see the neurologist where he ticked off the names of drugs like roll call. I sat at attention.

"Compazine?" "No good." "It's a great drug. Why not?" "The ER has forbidden me from taking it. I shook until the bed rattled and moved on its own. It was not an excellent day for an exorcism. The ER doc gave me the legal limit of IV Benedryll, which didn't make anything stop, and then the legal limit of IV Valium, which means I remember nothing after that. I can remember that even my jaw shook." "Reglan?" "Same deal, but the hospital will use it as long as they give me a shot of Benedryll first so the shaking is tolerable." "Phenergan?" "Made my tongue swell. Is that okay?" "No, no, that's not okay." We had to decide priorities. Daily treatment meant chomping another pill in addition to my cocktail o' joy: more side effects, more possible interactions, more brow-furrowing from doctors in deciding what was really wrong when shit invariably hit the ER. Daily treatment was no longer an option: goodbye, Inderal, you were a great one-night stand who could deliver the ooooo and the ahhh, but you made a terribly grumpy breakfast partner. I won't miss ya. The real priority was decided: fast, acute care to deal with problems as they presented themselves so that I could just get through. We decided that I would take a wallop of prednisone when I felt an aura - whether from a migraine, body pain, continued nausea, dehydration, sleep problems, medication cocktails, whatever. He calculated one milligram to every kilo of body weight. It would be a big dose. I would take two other drugs with it that have both worked at various times to help with pain while not inducing lethargy too badly. They could work together as a triad, as another cocktail. I would break the pain as soon as it presented and then run around as unfettered and hyper as a meth junkie.

So goes the theory. Works for me.

As I left, he told me to call to update him on the results: it might work; it might not. My veins conduct an ongoing chemistry experiment. The point is trying as pain teaches the way.

Photo credit: "buddha gaggle" by Perfecto Insecto on flickr (click on photo for more work by this artist). Permission obtained for use.

Sunday, January 08, 2006

Spreading joy like pollen

bee Originally uploaded by ko-knia.

Here I am buzzing around again in my own private Idaho, doing things my way, even if it makes me stand out a little for some people. "Do you know how long I've been walking around with my bra hanging from my wrist like this?" "Two hours, forty-two minutes, sixteen seconds." "Close. I keep meaning to put it on, then I see something else I would rather do. Lemme just get into this before something else catches my eye." *Commence Operation Bra-Wearing Without Removing Any Clothing First* "WHOA!" "Hold on - I can't hear you when I'm hopping. Okay, what?" "I have NEVER seen anyone put it on like that before. Where is your bra?" "It's on now - didn't you see me just go through that?" "Oh, it is. Wow. Isn't that a bit . . . unusual?"

Photo credit: "bee" by ko-knia on flickr (click on photo to see more of this artist's work).

Friday, January 06, 2006

How the f*%! does this thing work?

Originally uploaded by angrysalad.

This morning, before leaving for a methotrexate injection, which I can only assume had me highly discombobulated: "What did you bump into this morning?" "Oh, I closed the bedroom door on my own head." "I heard you whimpering afterwards." "Did you hear that it was BOOM-boom?" "Yes, actually." "That was the door slamming into my head and then my shoulder going oomph against the jamb."

"You might want to keep that between us." BRILLIANT! Shortly after this incident, I turned on the stove to heat water for coffee and put bread in the toaster. I was keenly aware of my access to fire, knives, and electricity, and I was not reassured. My trip to chemoland should go fine this morning as long as there is nothing too complicated, you know, like doors on hinges.

Photo credit: by angrysalad on flickr (click on photo for more of this artist's work). Permission obtained for use.

Thursday, January 05, 2006

6:39 a.m.

old car Originally uploaded by lightpainter.

At 6:39 this morning, I was already walking to the garage, keys in hand and jangling along the creek, and thinking about the oddness of driving while steak knives settled around my knee. Everything in the dark felt like it was waiting. Trees and rain moved like thirteen year old girls at their first dance, furtive and giddy. The cruelty of daylight and malfunctioning, autoimmune joints seemed ages away. Even with my knee slightly billowing, I could taste dew and not think about the imminent physical therapy routine that involves tying weights to my ankles. I walked with a consciousness of my legs and feet that only pain, slippery joints, and slipperier paths can bring. The rheumatoid arthritis component of lupus, in combination with a fibromyalgia flare, woke earlier with a bang. The only way to keep mobility and unfurl the knots is to work through pain. No one ever promised me that embodiment would be as easy as waiting for dawn. Miss Confuckinggeniality knows better than that. This is not a post about expectations. Once it is over, I drive home to play with food and hope that it stays put. I consider showering for a 9 a.m. meeting but realize I won't be able to move quickly enough to make it. Clock-bound I am not. The sweat and dew from 6:39 a.m. will simply have to stay glued on me, patient and encompassing.

Photo credit: "old car" by lightpainter (David Ramage) on flickr (click on photo to see more work by that artist). See his work and sale items at here and his thoughts on his photography and process at Ramaged. Permission obtained for use.

Social Deviance

creamer Originally uploaded by kreet.

Some people will never behave properly. Some people will always manage to land in their own private Idaho, no matter what the latitude. That's where I wind up, with dem folks. Evidence that I was right to think Maria was Miss Thang: She recently confessed to being busted in college. Pot? No. Drinking? Entirely too pedestrian. Orgies? Nope, better. She was charged with HOUSING A MARSUPIAL. Perfection. I thought I really had something when I stepped in elephant shit in the utter dark wasteland that existed behind the circus tent and asked, after trudging through and over an odd hill remarkable for its texture, "Did anyone else think that hill was weird?" (only to hear, "What hill?" and "JESUS! Do you smell that?"). While cleaning it up might have compared with slummin' it in one of Dante's rings, I certainly didn't get charged with anything. I mean, there's nothing on my permanent record, though I wound up throwing out a pair of shoes. Maria, may you always have something this wonderful in your...uh, pocket. Or pouch. Or something.

Photo credit: "creamer" by kreet (Krista Milito) on flickr (click the photo for more of this artist's work). Krista is a professional photographer with a gift for portraits and fine art, which you can see here. Permission obtained for use.

Tuesday, January 03, 2006

Balancing in the air

Speedway to heaven? Originally uploaded by Pensiero.

This is a delicate balance, this floating above earthly flesh while performing the mundane like it's my ticket to the divine. This is the way that the day proceeds. Get to consciousness. It's not so easy nor direct. It floats like ether and is just about as easy to catch in a butterfly net. Work for two hours. Move the completed stuff to the left side of the desk and admire it. Get food. Come back to work. Work for a shorter period and move less to the left. That's okay. Clean the dishes. Work short again, move to the left. Admire again. This part is very important and makes the throbbing through the right side of my body easier to ignore; work suspends me above it and makes me float lightly. Sort the laundry. Put the cycle on permanent press. Be grateful for the presence of plentiful panties in the drawer soon. Do shorter work and leave it on the bed, because I know I have to do better, and I must. It is required.

Throw the clothes in the dryer. Stop being afraid of what will hurt next because it will, in fact, hurt. That is okay, too. The sun will rise and will, thankfully, set. This is the kind of lucidity that arrives only through the simplicity of chores and the repetition of even simpler goals.

Work a little more, move it to the left. Scrub the crusty stuff off the other plate in the sink. Don't contemplate what colonies it might have spawned. Back to work. The goal is to keep moving it to the left.

Photo credit: "Speedway to heaven?" by pensiero on flickr (click on photo to see more work by this artist). Permission obtained for use.

Monday, January 02, 2006


Keep Lids Closed Originally uploaded by filmgoerjuan.

I can't keep my lids closed anymore.

I have to wake up, even if it feels like parts of my body are missing in action and my eyes are going in different directions. Which they are, at the moment. During these long, druggy sleeps, I dream. I drool copiously. There's a map of my mouth's locations all over my dark pillow cases. I remember two things from these dreams. First, that I was living in my old home where someone said, "We are still alone," at which point I gagged on something and pulled a stone out of my mouth (I can only imagine the quantities of droolage that oozed like party strings from my mouth at this point). Second, I recall saying with the force of a general to this person, "That's my quiche, dipshit!"

I didn't say they were profound dreams. I said they were drooly and druggy.

It's already dark now, possibly after midnight, but I'm not sure of that. It's quiet here in front of the monitor. I can feel the humming vibrations of the computer against my calf. It's better to sit here, suspended beyond time, and keep tapping away at letters to see if they reach you. If I lean over at a 55 degree angle to see the digital clock on the floor, I may very well baptize it with the French toast I just crammed in my mouth. First food, then drugs. Well, okay - more drugs. I've slept through the day. First it was 50 mg of painkiller, and then another 50 mg, because I was allowed and because I was not going to hang over a toilet cajoling the deities to save my sorry ass as I tried to keep my hair clean. I tied gel ice packs to my body with bands from my physical therapist that are supposed to offer resistance in the "baby-level" exercises I started so long ago.

Resistance is coming from other sources. I went to the gym last night and realized that my ulnar nerves were singing. There were two fifteen-pound dumbbells not in use and singing back. I will not have my ass whooped by fifteen-pounders, for fuck's sake. I picked them up and curled. And again. I didn't care that some guy was giving me "hint, hint" looks in the mirror because he wanted them. Miss Confuckinggeniality I am not. In time, the spasms through my arms stopped, and I finally shared.

Does work still happen in between the times when time is suspended? Yes. It does. I will not have my ass whooped by tasks I know I can do, even if I can't do them successively or quickly. The contacts were contacted, and the writing was written. I am four hours into a nine-hour project and will finish before 6 a.m. Clock-bound I am not.

There is a pacing that seeps into the air at these times. My body wants to keep the lids closed. I know the only answer is to initiate the chemistry experiment of chemicals with strange names (if I didn't know what Arava actually was, I would think it's a great name for my first-born -- yes, I would be one of THOSE cringe-inducing parents), get food, hydrate like a mofo, start stretches, and not lie there like I am a dumpster full of toxins. Even when I am.

Photo credit: "Keep Lids Closed" by flimgoerjuan on flickr (click on photo for more work by this artist). His blog is The Calm Dreariness, where you can see more of his work. Permission obtained for use.

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Sunday, January 01, 2006

I see trashed people!

I will venture out on New Year's Day, and I will deal with people who look like this. They will utter things like "uuuuhhhrr" and "ahhhm." They will be badly dehydrated and poke at me with a prickly attitude. They have scratchy, unseeing eyes and indulge in excessive mouth-breathing. I will intentionally speak louder than I must and slam doors with vigor. Miss Confuckinggeniality does not take kindly to people who induce their own barfing knowingly and intentionally. I will also open strong-smelling jars of condiments near them. Tags: , , , ,

Saturday, December 31, 2005

Holiday-Induced Stupidity

Holidays turn me into such a grunting, monosyllabic dork. "Uh" becomes an intelligent statement. And that's without all my drugs. Except crack - crack might help me on the personality front during all this happiness shit. I should mention that I am sober through all of it. Perhaps that is what kills the joy, I'm not sure. When an oncology staffer mentioned that she didn't know how to get into the holiday spirit this year, my favorite bobble head recommended gin. I'm puzzled by the onslaught of ritual that everyone seems to know about parties, getting knackered, and being polite only to people's faces, which shouldn't be a surprising disclosure from someone who can't figure out how to keep her shirt on during basic human interaction. Not that this is a bad thing, mind you. I'm losing the ability to make nice-nice at loud social situations where everyone is happy to go home, anyhow. I think this is a virtue, but that's exactly what Miss Confuckinggeniality would think. Uh. Or happy new year!

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Thursday, December 29, 2005

Fluid to Body Memory

nasty sink Originally uploaded by smalldogs.

Evidence of suffering may be reasonable and foreseeable; watch where you step. Today was a trip to chemoland, where I drove while dad talked about one of our fav subjects: boxing, the great boxers spawned by Philadelphia, and injury as a matter of course in a fighter's life. "Sugar Ray Robinson killed a man, Tim Doyle," Bobblehead said. "He even had to appear in front of a Senate committee where they were grilling him and asking him, 'Didn't you know he was in trouble before you hit him again?' "Sugar Ray was a smart guy. He said, 'Senator, my job is to get people in trouble.' That ended it." Today I leave my dad in the waiting room to get his bad local journalism fix. I glide into the treatment area where I never feel my feet hitting the floor. I can see things are stressful and terse for both patients and staff. They are short-staffed today, thanks to an oversight from an agency. Service is slower. Infusion recliners seem askew. Even with these problems, I have still found the best staff I have ever encountered; they actually find veins when no one else can, and they can tolerate my whiney responses to needles. I pick my recliner, the one between the pharmacy window and the nurses' station. I throw my coat on the chair before sitting. As I turn to plunk in the chair, I lower my purse to the floor. That's when I see not droplets, but a puddle, a true puddle, complete with a few splatter marks, of blood. I put my purse on my lap instead. It isn't bodily fluid anymore. It's a trip to my own infusions where vein after vein after vein deflated or ruptured, running dry and rejecting the IV. My worst was the day I screwed up my prednisone, taking it literally minutes before my IV insertion. It was my own fault. With each attempt at a vein, I screamed. One scream was worth the work: the IV took, and I squeezed my dad's hand through it. Later that evening, I overhead him say he thought I had broken it because it hurt him so badly. Pain begets different types of strength. The nurse wasn't sure whether that vein was a false hope, so she left the needle in a bit with my arm tied off at the bicep. The blood continued to ooze. The pressure was drowning; the air felt like water. It was the best and smartest thing she could have done for me. The point was to see if the vein could withstand the pressure and get a good blood return. Later I overheard my dad tell someone that he hadn't seen so much blood shoot from a vein. When I asked him about it, he said he wondered what was wrong, why they would make me bleed out like that into a gauze pad when my veins were shot and throbbing. He wondered about the pain, whether it would finally work and be worth the gruesome test. I could picture the nurse explaining the bleeding and pain: "My job is to get people in trouble." The bleeding had a purpose. I saturated the gauze pad. The nurse removed the needle to thread in the catheter. The IV drip started. Finally I had my meds for the next hours in that vein without it collapsing.

All of this I remembered, fingering my purse's zipper and carefully placing my feet out of reach of some faceless (and apparently nearly veinless) patient's frustrated suffering.

Photo credit: "nasty sink" by smalldogs (click on the photo to see more of this artist's work on flickr), who is a published writer and the owner of Small Dogs Press. Permission obtained for use.

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Sex and Gender: The "F" Words

Nuns, What can I say Originally uploaded by Year of the Monkey.

Madonna and whore.

I've failed at both, most likely because those identities are rooted in terms like "womanhood," "femininity," and even "femaleness," terms that don't quite suit who I am. Womanness is a class that felt like a requirement for the major rather than an elective that I chose because of the natural fit and passion for the subject. My dream last night confirmed it. I was in school again, somewhere with the class offerings of a university but with the Immaculate Heart of Mary nuns of my grade-school years teaching all classes. My fourth grade teacher, Sister Maria of the Holy White Face (she called herself that - I couldn't nearly make up anything that...Catholic), was teaching a course called, "Women, the History," and I was registered for it. I couldn't remember choosing that class or signing up for it.

I kept seeing my classmates in the hallways, knowing they were in the class and attending it regularly; they behaved, took notes, and did the homework, but I never went. One woman who seemed nice offered me the notes for the lecture; while I yes-ed her to death about the notes, I knew I would never claim them from her, never use them, never care. Toward the end of the dream, the nice woman asked about my feelings on the final exam. There was one? I obliquely knew that there was one and that I accidentally, on-purpose slept through it.

I continued through the hallway, walking with both relief and sadness: I knew I would not take the class nor the exam and wouldn't force myself, although the idea of a big F on my "permanent record" didn't sit well with me. I don't like failing, at times even when I think the challenge is shitty.

I was going to fail in femaleness, and I knew it. I courted it. That is when I encountered Sister Maria of the Holy White Face in my dream, looking as pale and cold as a penguin waddling on ice. She gave me some serious Nun Face (ask me to demonstrate this in the midst of boob theatre) and let me know that I had fucked up but good. "Go to ____." She gave me directions that I couldn't hear, but she was sending me to a place where I could complete forms to take the test. I took a step in the direction her harsh stump of a finger pointed, only to nearly trip over myself as I turned and shouted at her face, "I just don't have to." I had failed at womanhood, even with other women offering to help me learn, and while this defeat - a defeat that I had essentially chosen through each decision I made - wasn't easy, I wasn't going to have it any other way.

Photo credit: "Nuns, What can I say," in the gallery of Year of the Monkey on flickr (click on photo for more of this gallery). Permission granted. Work identified as public domain.

Wednesday, December 28, 2005

No Sniveling

Child Pose Originally uploaded by Be Still.

"NO SNIVELING" was the bumpersticker on the car in front of me as I dragged ass to Staples after calling the outpatient oncology suite for methotrexate tomorrow.

Yesterday I did dead lifts at the gym with a 20 pound barbell in each hand. Put them down, pick them up again, breathe, stare in the mirror, put them down. In time, the infused vein bulged.

By last evening, new bruising rose the surface. It reminded me of the way wine spread through a new white tablecloth. The fresh bruising finally brought relief from the pressure, a sign that the healing was really starting. It usually takes two weeks to get over the worst of it, given the other meds.

Tonight I was tempted to poke at it in the same way you tongue an aching tooth, but then I realized, NO SNIVELING.

Photo credit: "Child Pose" by Be Still on flickr (click on photo for more of this artist's work) and on her blog, Be Still. Permission for use.

Tuesday, December 27, 2005


A friend (Sue) remarked that losing a parent is like losing your compass. It is not as easy to find your direction. There is no more generational line between you and mortality.

Tonight, my dad gave me a picture of him that he found in his drawer. When I get a decent scanner or hook up my current so-so one, I'll show him to you. He is about ten and giggling in the picture, ever the consummate pretty boy, one of the reasons why he got the crap kicked out of him when he was young.

He found the picture while flipping through his high school yearbook, looking to find the faces of those who recently died. His clock is running out, and I am losing the path.

As virtous men passe mildly'away, And whisper to their soules, to goe, Whilst some of their sad friends doe say, The breath goes now, and some say, no: So let us melt, and make no noise...

[From John Donne]

Monday, December 26, 2005

A gift

Ink is blood Originally uploaded by DrJoanne.

This was the best gift I received this holiday: a poem from Silvis Rivers, who posted it to my profile at flickr.

For You Jnnburk :

At the place of the

Dark tongueless tongue

I met the last spirit

Of the self

Life had once made it strong

And it learned the final kiss

And this

Was acceptance

And the loss of bliss

I never knew what to say

When I met the void's face

I only knew

The privacy

Of my anguished space

So what was worth saying

As my soul

On a warfield blacked ?

Only a strange star of

Diary and texts

Could I offer

As the last shell lands

By my shaking courage

And as my fear expects...

Then sister of pain

All walk the muds at last

We shall know them

When the doors

Of our diseases blast

But we shall fight

For our lives first

For we are born

Oh yes ,

Out of a galaxy's thirst ....

Some of you is witnessed with a bow .

Deep respect ...Silvis Rivers ..

Silvis Rivers' profile is here with a link to his webpage here.

Photo credit: "Ink is Blood" by Dr Joanne on flickr (click on photo to see more of her work).


shards of glass Originally uploaded by kinsiekins.

There are not shards of glass in my arm. There are not shards of glass in my arm. I wonder if I click my heels three times, I can get to the place where words create reality through the force of will to believe.

After years of prednisone daily, my veins are like origami made of rice paper. The drip of Aredia is somewhat rough on the veins, and the throb can last intermittently for up to two weeks. Last night, unexpectantly, the infused vein swelled and up popped three strange-looking bruises right along the vein. I might have brought that on myself. Force and will. Force and will. Yesterday I went to the gym. Regular push-ups were not enough. Instead of keeping my body parallel to the floor as my arms pumped, I hooked both ankles over a support that is as high as my waist when I am standing. The result is much more resistance to the arms during the push-up. I did 45 of them and swore to myself that I wouldn't care if the flesh ripped clean off my arms.

Photo credit: "shards of glass" by kinsiekins on flickr (click on photo to see more of the artist's work).

Sunday, December 25, 2005


Some things are just plain tacky no matter what the context. Today I drove to the deli with my favorite bobblehead for our family's Christmas meal. We've decided that the effort expended on cooking and cleaning can be turned into a bill at the deli, and this way no one gets second-degree burns. There I was confronted with an odd specimen: the Pimpomatic Suburbanite, who was throwin' down the style with plenty of (somewhat discolored) bling in each contour of cartildge in his ears, on his watch, and on his key chain. None of that topped the oversized Santa Claus hat, emblazoned with silver glitter: "JINGLE THIS, BEEYOTCH!" It was the attitude that read: "Heeeyyyy baby, I got the hook-up right here: Cletus got me second row seats for the Monster Truck pull, and I just know you'll come to my crib afterward for some Funyons and wine in a box."

Saturday, December 24, 2005

Where is my body?

DSC_6045 Originally uploaded by junku.

My feet don't appear to be anywhere on the ground. It's not quite 24 hours after Aredia, a so-not-longish infusion at the outpatient infusion center. It looks like a manic yellowjacket unleashed some serious whoop-ass on my forearm. The vein is a distinct purply salmon tributary, swollen and thrown into relief against the white underbelly of my arm. My head is somewhere. Maybe it's under my covers still or hovering above the toilet looking for extra toothpaste. I can taste chemical in my mouth. It's Christmas Eve, and I am running around in shorts. There is something very wrong with that statement on the East Coast. I have to brave Best Buys now to get my sis her prezzie. I wonder if it's socially acceptable around the holidays to post warning quotes on one's forehead with a red sharpie... "Don't push me. I am not okay." -"Jumpers," Sleater-Kinney

Photo credit: "DSC 6045" by junku on flickr (click on photo for more of this artist's work).

Friday, December 23, 2005

Welcome to Sickie World

Head Off Originally uploaded by stanley.

As I drove to the oncology infusion suite today, my dad asked me, "Is your barf blog getting many hits?" I told him my decision to share with all of cyberland the stuff I put in emails to friends and in certain password-protected Word files. There are plenty of people who have a sense of dignity and reserve (or perhaps shame) about bodily functions.

I'm not one of them.

Photo credit: "Head Off" by stanley at flickr (click on the photo to see more of this artist's work).His website is Stanley Design.Permission obtained for use.

Skin crawl

If my skin crawls right off my body and into the kitchen of its own accord, I wouldn't be surprised. I had my Aredia infusion today, complete with pre-meds before the IV. At some point, I expect to feel like my body and head are somehow in proportion to each other.

A letter to my ex about enough

I don't know Originally uploaded by camil tulcan.

Dear D.,

Nakedness can change boundaries. There's my unremarkable first premise. Hopefully that's as obvious as a bare breast. You know me well. Cliches are the worst, but therein lie the truth(s). That's another premise. I'm telling you about cliches because I'm about to drop the motherload on you, D.

Sometimes love isn't enough.

That cliche just HAD to happen. I promise I'm not shoveling sentimentality in your path like so much rotting compost. This letter is not about sentimentality; this is about sleeping alone now, by choice and by necessity.

I know you would have stayed through awful times, but I had to leave... Because while you might be okay with the intimacy involved in navigating sick waters, I am not, particularly when I am the one with less power, fewer options, and more barfing. Because I have so many people who invade my space during illness out of necessity (e.g., nurses), I had mixed emotions about the level of access and intrusion that could come with our future.

Because someone who leaps on the role of caretaker might have other, less noble motives besides love, like control and the resulting emotional security that is ultimately predicated on false power dynamics. Because you had a tight leash, and I don't think love involves wearing a metaphorical collar. Because sometimes going through it without companionship is okay. Because illness won't cause me to insult someone by "settling" for that person. Because this was one of many issues with you where we could not find a comfortable place in each other's gravitational field. Because "hard times" are as inevitable as thunderstorms in July, and transcendence is a choice. Because it is my choice. Because staying with someone out of fear of being alone or out of fear of feeling pain alone is not good enough. Because there are many ways of partnering with many people who come into our lives (sometimes including sex, sometimes not) to meet needs and to find love. Because some souls are always going to flicker more like restless horses than hearth fires. Because I'm one of them.

Photo credit: "I don't know," by camil tulcan at flickr (click on the photo more of this artist's work). Permission obtained for use.

Thursday, December 22, 2005

When he is the passenger

Said to my father while I am driving on Broad Street:

Bobblehead bunny Originally uploaded by isogloss.

"Stop doing that. I don't drive that badly. Those are potholes and big bumps. I can't help it. You are NOT a bobblehead. Stop that." While on 21st Street, when my eyes are glued to the idiots coming out of Wawa and my peripheral vision still works: "I can see you doing that with your head again, ya know. Stop that. Those are grooves in the road. I don't have anywhere else to go. Don't bobblehead me."

Photo credit: "Bobblehead bunny" by isogloss on flickr (click on the photo for more of this artist's work). See the blog at isoglossia. Permission obtained for use.

Roadkill Seeks Motivation

Uglydoll Originally uploaded by What What.

'Tis the day after methotrexate. With less hormonal activity, I am not a walking (and sleeping) zombie. In fact, I did two loads of laundry before 8 a.m., and submitted a rough draft of some writing to my boss.

By 8:30 a.m., I hit the gym for my daily PT. This is a rather graceless act post-meds. My regular gym bag is a white cotton bag that has my keys, phone, radio, Ace bandages, tissues, and pads in it. The basics. It also has a wadded-up barf bag of one variety or another. A little vomit doesn't have to get in the way of some truly good lifting - well, not mine, anyhow. I have learned to save items that might be useful, so today I snatched from the broom closet an old promotional trick-or-treat bag from that atrocious movie, The Incredibles. They have henceforth been named The Chunks.

My little white bag sits next to the bench where I have selected my dumbbells for the morning: 2 ten pounders, 2 twelve pounders, and 2 twenty pounders. I am one step over now, staring at myself balancing and straining in the mirror, feet shoulder-width apart as my shoulders and delts work. Between my feet sits the unfurled, waiting The Chunks bag. This is far more subtle than when I used to drag the big gray trash cans from their regular locations to wherever I was working out.

Photo credit: "Ugly Doll" by What What on flickr (click on the photo for more work by this artist). Take a look at his official website, What What, and the WhatBlog. Permission obtained for use.

The Original

domokun chick orgy Originally uploaded by shboom.

I stand out in a crowd of 9-5 workers.

I don't have the language to describe what it is like to work in order to work; that is, a number of drugs and hours of physical therapy in a day enable me to attempt a "normal" life. That is labor. Being able to work and earn becomes a privilege in and of itself. I may be sick, but that doesn't mean I have to reek of French fries when I come home. Meaningless labor options were the scraps I got from various rehab and vocational assistance places when I first started to investigate training, education, and employment for people with disabilities. I was told that there was no help for a disabled person with significant medical expenses who wanted to go to grad school.

Did everyone who became ill or who didn't win the genetic lottery or who had a traumatic accident get stupid and aspire to underemployment? I went on to my Master's degree and law school anyhow (hellooooooooo, student loans!). No one can survive on scraps, and having rogue white cells doesn't make me grateful for gruel.

Photo credit: "domokun chick orgy" by shboom on flickr (click on photo for more of this artist's work). Permission obtained for use.

Wednesday, December 21, 2005

Domestic Labor

The routine BS of life is still present in mine, even with all this hoopla over illnesses and drugs and barfing, oh yes, much barfing. Laundry is my big chore. I produce quantities of it that overfloweth the bag, quantities that are sweaty, smelly, and craving "fresh scent." I take hormones and steroids that generate spontaneous climatic changes in my body; my skin can feel like it's crawling, or it starts sweating like Nixon's forehead. Either way, it means clothes going off my body and yet another change in a day. That is a lot of panties in a week, lemme tell ya. This does not go over well in an office, yet another reason to find my life in working from home and other environments I can control. I made choices about my three degrees knowing full well that I was sick and that I would need independence and creativity in ways that healthy people never have to face. I can't quite convey to others the quirks of taking daily cocktails of various drugs for systemic diseases that are not in remission. Even skin and sweat pose obstacle courses that require management, accommodations, and energy in a day that healthy bodies never endure. This is me trying to translate to you the realities of a different universe with signals and meanings that might escape you otherwise. Maybe they wouldn't escape you. Maybe you're different. Maybe you're a sickie, too.

Not clock-bound

Time and I have finally made our peace. Unfortunately this negotiated, undulating agreement doesn't conform to any norm according to the Eastern Standard Time zone or to "business hours," which are highly overrated. I show up for work when agreed, more often than not, and meet deadlines as much as any other person. Yet work may start at 2 a.m., or whenever it is that pain has let me go back to my life in the outside world instead of being trapped inside my skin.

I can't be bound by a 9 a.m. commitment to be seated at a desk because it isn't clear whether neurologically that will be possible. Conceivably, I could twitch, dance, and puke my way to the train station and to an office, but no one will stand near me at the coffee machine.

This is why I hedge often in answering questions about my life because somehow, "disabled professional" = lazy ass. Time flows differently around me. Much like pain, it is always present, always asking, and always waiting.

Return to Chemoland

Originally uploaded by pierre lascott.

Dad and I will go back to the infusion center where the needle will return to my hip and I will return to my bed, hoping that the nausea not be as thick and soupy as L.A. smog on a humid mid-August day. I am going because I have two choices: get the drug or get sicker. He is going because he has every choice, and he wants to be with me.

Once the fire alarm went off in outpatient oncology as we sat in the hallway, waiting. I told him the image in my head: 20 hooked-up patients tripping over their IV tubes as they bumbled out into the street and got tangled like dogs on leashes. We laugh at anything horrible.

Photo credit: by pierre lascott on flickr (click on photo for more ofthis artist's work). You can see more of his work and humor on his webpage.

Tuesday, December 20, 2005

A Day Close to Deities

Toilets Onthe Road Originally uploaded by LonelyBob.

Apparently yesterday involved more than just lil' ol' me being deeply involved in prayer before a toilet.

Thanks to a wallop of mega steroids and other fun substances, another ill friend said many prayers before her throne, enough that she eventually named the toilet Grace.

Redemption has come in stranger places.

Photo credit: "Toilets on the Road" by Lonely Bob on flickr (click on photo for more ofthis artist's work). You can see his blog here.

Monday, December 19, 2005

I unfortunately have an opinion on this...

ahhhhhhhhhhhhhh Originally uploaded by zengzung.

I am a few seconds away from calling the infusion suite where this week I will get a shot of methotrexate and an infusion of Aredia. I expect Miss Confuckinggeniality to arrive at any moment, and it's not because the hospital staff aren't fabulous - they are, and they have to put up with a lot while remaining graceful. Or at least not bitch-slapping some truly deserving patients. I know I'll be nursing sclerosed veins through the weekend.

Photo credit: "ahhhhhhhhhhh" by zengzung on flickr (click on the photo for more work by this artist). Her blog is here.

Visual Disturbances

I have a personal strobe light show that starts when a migraine has gotten off to a full gallop. Sometimes I swear the flashes are so bright and annoying that others *must* be able to see them.

At 2 a.m.

I prayed. I begged. I was on my knees and belly after the first twitch of an aura hit.

"Aura" is a term that would appear, from sound alone, to impart some angelic or redeeming quality. An aura, the experience, is nothing of the sort, unless by "angelic," you mean the kind of angel that guides you into hurl hell. An aura is a set of symptoms and sensations that let you know something wicked this way comes. I've gotten auras before rheumatoid arthritis and lupus flares, and I definitely get an aura before a migraine, my 2 a.m. visitor. I asked Jesus, Buddha, Krishna, or whoever was heading the graveyard shift to pitch in. Someone was listening.

So far, so good. I have only had my breakfast once, not twice, and let's hope it stays that way.

Photo credit: "Buddha Bounces As I Drive Past Am-Ko" by benchilada on flickr (click on photo for more work from this artist). His livejournal where you can also see his fiction and non-fiction: Permission obtained for use.

Sunday, December 18, 2005

Morning-After Face

self (as Marilyn Monroe) Originally uploaded by zombizi prime.

I so hate it when I fall asleep with all my makeup on. I have surrealist impressionist art all over my pillow. All those fabulous lashes look like hundreds of baby spiders trying to attack my eyes. Now I feel zits coming on: shall we aim for the constellation of Capricorn this time? How about Sag?

Photo credit: "self (as Marilyn Monroe)" by zombizi prime (click on photo for more work by this artist). Read his writing and see more os his work at Zombizi Zero-Six.

Saturday, December 17, 2005

Letter to my ex, whom I saw in the gym last week

frozen hearts Originally uploaded by KeliBlonde.

Dear D.,

You know I have a problem with coats.

If I am going to be working out and sweaty, I don't feel like keeping track of my stuff in a locker (I got ripped off that way, anyhow), and I don't want to funk up my coat either.

The better choice for me, as you observed often years ago, has been to abandon the coat, even in sub-freezing temperatures, and run full-throttle into the gym from my car.

Your suspicions were confirmed by a neurologist you never met in '03: the doctor taped a special thermometer to my hand, round and flat, and gawked at the reading: 54 degrees.

You could have told him that.

They were even colder last week when I came in from the cold.

I could have said "hello" to you or even "how are you?" That is not the m.o. of Miss Confuckinggeniality.

Hopefully you can forgive me for responding to your "hello" by grabbing your bare arm as quickly and hard as I could to see if you would yelp.

You didn't even blink. Thanks for not disappointing me.

Miss CFG

Photo credit: "frozen hearts" by KeliBlonde on flickr (click on photo for more work by this artist). Her blog is Perpetual Blonde.

Integration of the Wolf's Bite

03-KEELE Originally uploaded by rent-a-moose.
I try to embrace the destructive parts of myself instead of distancing myself from them. Considering that my body is both my ally and my enemy through lupus, my path isn't level, let alone readily discernible. It shifts and looks different depending on the angle. This reality of the body has served nicely as a metaphor for my psyche, but that's another meditation. "Lupus" is Latin for wolf. The story behind the terminology is here:
The term lupus (Latin for wolf) is attributed to the thirteenth century physician Rogerius who used it to describe erosive facial lesions that were reminiscent of a wolf's bite.

I often feel bitten. After the lupus diagnosis on 8.28.98 that brought with it Sjogren's, fibro, and bone disease shortly thereafter, the basic treatment wasn't working. I wasn't one of the 300,000 American women who had the inactive or mild version of the disease. It was apparent that another drug had to be added to Plaquenil, prednisone, Medrol packs, Ansaid, and Solumedrol pulses: methotrexate. I hated needles and was a wimp about them - I still am, but now I know more about trigger spots on my body, ways of inserting the needle, and the proper length of the needle given my weight. As a rheumatology patient, I get doses of oncology drugs at amounts that are far lower than the cancer dose. That's still no picnic. The fact that an intramuscular stick was involved just added salt to the nausea. As soon as the drug was prescribed, I did what I did for every drug that entered my body: I researched it laboriously. I was scared of the increased risk of infections (rightly so, I learned these years, after bizarre bouts with bacteria and prolonged antibiotics) and scared of what the drug could do long-term to my fertility. Then the dreams came. I was walking through a building with what appeared to be an atrium or rotunda. I now recognize this building as my dream interpretation of the main lobby of the local hospital where my diagnosis was made. In both dream and reality, you can stand in the lobbby and look up to see all the stories of the hospital. I can look up and see the first floor, where the cancer patients are, or to the sixth floor, where the neuro patients are. In the dream, I have shackles on my wrists with chains leading to wolves on either side of me. We are bound together. I'm fearful of my death and that the wolves will turn on me since they have nowhere to go but to attack me. They don't. They move with me like any dog that's relatively new on a leash: basically following along but also tugging and pulling, restless but guided. That has, in fact, been the reality of my walk with lupus, although the wolves have sometimes been in charge of the lead and dragging me on my ass. Ass times were my worst times with neurological symptoms, neuropathies, and brain inflammation.

It's an uneasy balance at times, like when two natural leaders learn to ballroom dance with each other. Learning how to dominate and overcome my pain symptoms while being submissive to other symptoms has been my ultimate in tightrope-walking. In the dream, I'm walking through the atrium, wolves both shackled and in tow, and finally winding my way up the floors, when I'm stopped by a figure, neither a man nor a woman, whose message I heard as clearly in the dream as I do now in my head:

"If you ever want children, they'll have to build you a synthetic womb."

It took acceptance to realize that my own womb really wouldn't cut it if I wanted children of my own, and then I began my search into where reproduction, contracts, and technology have met. I've reconciled the fact that being a "true" biological mother doesn't negate my mothering abilities. I wonder about another woman carrying a child made from my ovum and a donor's sperm. I wonder about adoption. I wonder about ways of creating family, not with a primary person - a spouse for lack of better terminology - but with, for example, a childless gay couple I know, or with a very good friend who could make a commitment to raising a child with me.

There are many possibilities, even when shackled to wild things.

Photo credit: "03-KEELE" by rent-a-moose on flickr (click on photo to see more ofthis artist’s work). Her website is MooseRental. She also keeps a LiveJournal with great photos. Permission obtained for use.