Monday, May 31, 2004

blandly going where...

four weeks now. still can't completely taste anything i eat. it's not like it's life-threatening or that it leaves me significantly disabled, but it's unbelievably frustrating and annoying.

saw ESotSM again and i'm convinced that i'm in love with this movie. i file it into the very solipsistic category of "showing up in my life when it is most needed/relevant".

when i lived in boston, settling into myself after the silly, idealistic, romanticized notion known as "college", i spent a lot of really good time by myself. i would take the T into the city and explore, wander around for hours. i'd have my headphones on, listening to whatever suited my mood. me at 22. god, i was such a baby--it feels like lifetimes ago. but these moments were and are so valuable to me because they are the world as it is most beautiful, the world on my terms. lately i've been looking for those moments again. i can't tell if it's some sort of retreat into what feels best or a regression into what feels safe and insulated. it may be that both are true and neither is bad. the other day i was walking through rittenhouse square on my way to the gym and this group of young parents were guiding their small children through a game of t-ball. it was the loveliest thing i've ever seen.

i'm not really sure where i'm going with this, but ESotSM puts me in that place. i have this favorite emotion, and i know it's kind of lame to have a favorite emotion, but i love feeling enchanted, but in a heartbroken and melancholic way. like "famous blue raincoat" by leonard cohen or "trains across the sea" by the silver jews. like that gustave courbet painting _waves_. it's this feeling that casts the perfect light on how fated and transient and broken we all are, but also is able to celebrate that very vulnerability. ESotSM falls in that category. so does _magnolia_.

i told stean the other night, as i was crying myself silly, that i feel like the velveteen rabbit. like i'm going to be thrown away because i'm full of sickness. stean reminded me that the velveteen rabbit was made real because of that experience. the weird thing is, i believe that will happen to me, too. but i have to get through this whole thrown-away part before i can make it to the resurrection. and it feels like i have a long way to go before i get there.

eternal sunshine...

finally saw "eternal sunshine of the spotless mind". i thought it was beautiful. i think i'm obsessed with it. i'm going to see it again this afternoon. there was something about the theme of fighting to keep your experiences yours even though that control has been given over to someone/thing else that hit home pretty hard.

i told stean that he and i are joel and clementine, and he (reluctantly, because he says i analyze things too much) agreed. sometimes he's j and i'm c and other times i'm j and he's c. perhaps it's just a movie with some truth to it for those of us who have imperfect relationships, to remind us that those imperfections are what make the relationships worthwhile.

...oh, and i've decided that i'll dye my hair as red as a crayon after amy's wedding.

Friday, May 28, 2004

nose to the grindstone/balls to the wall...

i just wrote out this long post about this giant melee that's been brewing at work this past week and then deleted every bit of it. it's just not something that's worth remembering.

the one point i'll note is this:

in the midst of sitting through a childish attack by my boss today inspired by a miscommunication between her and the guy who reports to me that she blew way out of proportion, i found myself wanting to blurt out in my defense, "woman, do you have any idea what i've been going through in the past couple of months?! do you have any idea of the kinds of horrific thoughts that constantly drift in and out of my head?!"

i know that i've met her head-on a couple of times when i've felt that she was making demands that were unrealistic or short-sighted, and each time i've done it, she's reacted personally and has attacked me personally. i know that perhaps my biggest workplace weakness is knowing when to keep quiet and how to speak when i must... but good god--in my own defense, my first impulse was to fall back on this stupid disease?! how sad have i become that i would allow myself to let this become my scapegoat!? how irresponsible and petty am i?! where is my head these days?!

ugh, i just did it again--wrote out a discourse on the bizarre injustices of my workplace. not. worth. remembering! shift. scroll. delete! okay, nine weeks. nine weeks from today i give my notice. i just have to behave for nine weeks.

hey! nine weeks ago today i had a brain biopsy!

Thursday, May 27, 2004

imperfect decisions...

dr pruitt called yesterday. there was no presence of the oligoclonal bands in my spinal fluid that would have confirmed the diagnosis of MS. but, just because it doesn't say that it is MS, that doesn't mean that it confirms that it isn't. i've reached a weird point in the past few days. i want to go on as normal, but i can't. i don't even know what i have. and now i've had two tests (the spinal tap and the visual evoked potential) that have been negative for multiple sclerosis. so then, what the hell do i have? is it MS? is it an MS-like occurrence? is it something else altogether?

these are the things that i think about when i try to fall asleep. i think about what this means for the rest of my life. i think about who i'll become as a result of this disease. i think about how i will be limited as a result of this disease. i still feel afraid. i suppose there is always an element of fear in what we can't know. when this was a tumor, dr neff said i'd have to make "imperfect decisions". dr pruitt said to me when i finally talked to her this morning that we were making an "imperfect decision". in the midst of so much ambiguity, i just want to hear something absolute.

so, after dr p called yesterday, i called back and left a message with her secretary saying that i have a few questions. she called back yesterday evening, of course when i wasn't able to get to the phone. but she called again this morning, at about 8:30. i missed her call originally, but called her right back. i told her that i know that tests can't always confirm or rule out diagnoses, but i have this patient (as in one who is cared for medically, not as in one who is okay with waiting--i am certainly not that) need to put a name to what is going on with me. so here goes...

Clinically Isolated Syndrome (CIS) consistent with demyelination (MS). i have probable laboratory supported evidence which suggests multiple sclerosis, but i've only had a single demyelinating event.

so, while the spinal tap and the evoked potentials did not confirm MS, the MRI and the biopsy did. presenting with seizures. looking like a tumor. good god. makes my head spin. almost literally.

basically, i will probably have another episode within the next year or two, so dr p wants to go ahead with the avonex to better my chances of not having another episode. i should be on the avonex next week. an imperfect decision, but given what we know, it seems like the best one to make. in the meantime, she's going to push up my MRI date (currently scheduled for june 8th) by a week so she can see what is going on, then put me on steroids to lessen the inflamation so i can (hopefully) get my sight back. apparently, the steroids will send my appetite through the roof and i'll get all revved up. um, great?

at least i have a name. at least i had the ambiguity confirmed by someone who has a lot more knowledge than i do. at least i'm going to be doing something about it. somehow all of this doesn't really offer me any relief right now.

Sunday, May 23, 2004

61 days...

it was march 23rd, about this same time of the day, when i woke up in an emergency room. i just sent an e-mail out to friends who have been so good and patient about sending me messages to check up on me, messages to which i've been too absent-minded and distracted to respond. in it i described the past two months as the most bizarre and out of control of my life. that is most certainly true.

i thought at first to describe these past two months as the worst of my life, but i can't say that that is true. i've had some of the worst and most fearful moments of my life in these 61 days, but despite the head-swimming and the reeling and the panic and the denial and the madness, i've been shown real, unbelievable the world around me, in my friends, and in myself.

i wanted this to change my life and it is doing that. i've described myself on this weblog as not being the same as i was a few months ago. it would make a lot of things in my life easier if i could go back to who i was on march 22nd, but given that i can't do that, i think what i've been given in return, or maybe what i've found as a result has proven to be nothing short of amazing.

it's like this: in my old life, i would have never thought that i could deal very well with having a brain tumor diagnosis. but when i had a brain tumor diagnosis--even a malignant brain tumor diagnosis--i was scared and i cried a lot and i freaked out, but when the dust settled, i was strong and ready to beat it so i could get on with my life. and then, in the wake of that brain tumor diagnosis, a situation that i viewed as temporary, when doctors started talking about multiple sclerosis, a situation that would become part of the rest of my life, i wanted so badly for it to be a tumor.

i've had this mantra that i've been using with any pain or anxiety or fear or sleeplessness--"this will pass". i say it over and over and it truly makes me feel at ease. but MS will not pass. MS doesn't pass. and when that MS diagnosis finally came, i felt destroyed and betrayed and damned. but, the more i've learned about it, the better i've felt. and as i said in that e-mail i sent out to friends today, knowing that this is a disease that has a lot of ambiguity in how it affects different people, it does me no good to live any other way than as if i'm going to be fully functional for a long time.

i'm reading this book called _One L_ by scott turow. it's a terribly mainstream book to read for the soon-to-be law student, but i'm reading it out of curiosity and the need to read something relevant to my life that isn't about MS. it's about turow's first year at harvard law school in the 70s, and it makes the experience out to be almost physically painful--12 hours a day of studying, upped to 20 hours a day during exam time; cutthroat classmates; pretentious professors; never seeing non-law school significant others. now, i'm not going to harvard law school...on purpose. i don't want that kind of environment. but i'm excited about the school i've chosen and i'm excited about immersing myself in being a law student. and even if it gets even remotely close to what turow has described, i can't imagine it being any worse than what i've just gone through. so, pitt law, bring it. piece of cake.

Friday, May 21, 2004

rubber ducky, you're the one...

dr pruitt called yesterday evening. her message said that my white cell count from my spinal tap shows evidence of inflammation. she said there were 23 white blood cells in the spinal fluid, where normally there should only be 4 or 5. i don't know what this means. she called me again (i think by accident) this morning, and i asked her if she wanted me on the steroids to diminish that inflammation (which seems like a good idea to me), but she wants to wait until she gets the final spinal tap results--the one that will indicate the presence of protein bands (evidence of demyelination).

she said she's going to call in the avonex prescription today and i should be able to get started on it next week. good. the sooner the better.

when i was in the hospital, two of my friends from work visited me with a basket full of stuff, including a pez dispenser with an ernie head (as in bert and ernie). cosby (my dog) got hold of the basket at home and chewed up the pez dispenser, but managed to leave the ernie head intact. so now the ernie head resides on top of my computer at work, on top of a little plastic dinosaur.

so, yesterday i noticed this weird little yellow thing sticking on ernie's mouth. upon investigation, i found it to be a tiny drawing of a duck on yellow paper. well aware that i don't work with a single soul who would do something so charming, i realized that stean was here on saturday doing some part-time work. so i called him up and asked him if he had given the ernie on my desk a rubber ducky. he said, "you just now noticed that?"

i feel like i've been delayed in noticing things about him a lot lately. i'm glad he's had the patience with me to wait for me to catch up. because, of him, i'm awfully fond.

Wednesday, May 19, 2004

single process...

i just dyed my hair pink. manic panic hot hot pink. that's right--i am officially still a 16 year old girl. i feel liberated. i think i'd like to have pink hair forever.

strange magic...

oh my good grief! in all of the tests and procedures that i've undergone since this fun began on march 23rd, NOTHING has been as unbelievably weird as this blood patch. seriously--not a spinal tap, not a research study MRI in which the tunnel started shaking, not even a freaking brain biopsy compares to how surreal and bizarre what i experienced today was.

don't get me wrong--it worked, or at least i've been vertical now for nine hours, and while i still have a weird headache below and behind my right eye, i'm not crying and i'm not ready to pass out from the intense pressure i was feeling before. what i seem to have traded my awful headache for, however, is the oddest back pain i could possibly imagine. more on that later...

i had a one o'clock appointment. i spent my morning in my pajamas trying to make sure my half-assed insurance company would cover the blood patch procedure and having a text message conversation with my sister about why she is so much better off without her manipulative, selfish boyfriend. got the former straightened out. don't have the power to even make sense of the latter. anyway, felt okay enough, after having taken a caffeine pill earlier, to take the subway to presbyterian medical center for the procedure. got there a few minutes early, good thing since presby has possibly the most inane layout of any hospital i've seen yet.

found the department i needed, checked in, and then the headache came back. i sat and slouched (to try to take off some of the pressure) and waited and by the time they called me to head back to the examining room, i felt absolutely justified in being there for this procedure. i had to fill out one of those new patient forms that included the following three questions (not verbatim, by the by):
1. circle the number below that represents your pain at its worst:
2. circle the number below that represents your pain at its least:
3. circle the number below that represents your pain right now:
and of course, the numbers were on that oh-so-ambiguous 1-10 scale. i honestly don't know how to answer those questions and i hate that scale. because isn't it all relative? i suppose that pain is a relative thing. totally subjective. the worst pain i've ever felt was in the hours after my brain biopsy, when it felt like a nuclear bomb had hit my skull and the fallout was radiating out from the impact site all over my head. so i guess that would be a 10? and obviously 1 would be pain-free. but how do i qualify the other numbers on the scale? i propose the following new scale:
a) no pain
b) annoying pain, but not anything that's going to disturb my life
c) pain that i wouldn't call out of work with, but that would keep me from meeting friends for drinks afterwards
d) pain that i'll go to work with, but that will end up sending me home in the middle of the day
e) pain that will keep me from leaving the house
f) pain that makes me cry
g) pain that makes me cry and writhe and wish that would make me pass out
there. i could answer those questions on that scale. they would be the following:
1) f
2) d
3) f
but i think what i circled was, respectively, 8, 2, and 7.

anyway, so a neurologist came in and asked me some questions, and then left me alone for a while. this gave me some time to reflect. my reflections were as follows (warning: some language is extreme. my apologies, but i wasn't exactly having a good time):

jesus god what is going on with my life? i don't know how many more doctor visits and tests i can handle. i'm sitting here in a shithole examining room with a headache because my spinal fluid is leaking?! this is all just too unreal. it's too stupid to be real. i can't even go through with this it's so stupid. but it's kind of rude to just leave. and besides, i already paid my copay. but sweet christ they're going to patch me up with my own blood! it's all very economical and all but, hey, is that a helicopter? this place gets its own helicopter? it sounds like the landing pad is directly above my head. that neurologist was an ass. i don't like it here. this is the first thing i've had to do, besides MRIs, without someone here with me. that's not a big deal. it feels like a big deal. i wonder if i can put my feet up on this table. (big noise). that wasn't a good choice. jesus. i'm scared.

and then the anesthesiologist (galapo was his name--pretty young, lots of arrogance) came in and told me to lie down, probably because i looked like an idiot all slouched in a chair. he re-explained the process, asked me if i had questions, and then we went into the procedure room.

i had to strip down to my skivs and put on one of those hospital gowns. in the room, i laid (27 years old and a grammar stickler and for the life of me i can't remember the rules about lie and lay) down on my stomach on the table with my left arm extended above my head. they cleaned off my back and my arm with soap and then betadyne. the betadyne smelled bad. it smelled like betadyne. i said, "with all due respect, this room is a little scary." i felt terrified. dr galapo said, "it's scary?" and i said, "nothing. i'm just a little nervous." but it was scary--it looked like a storage closet qua operating room. what i could see from where i was lying was the fluoroscopy monitor (so they could see both the prior needle mark and where the new needle was going) and to the right there was this crate of six green oxygen tanks. the difference between this room and the other rooms where i've had invasive procedures (the spinal tap at HUP and the biopsy at Graduate) was almost extreme. those rooms were clinical and white and oozing with sterility. this room felt dark and cluttered. i don't doubt its cleanliness, but it was lacking in medical ambience.

there were four people other than me involved in the procedure. two men--the neurologist who had talked to me first, positioned at my back to put the blood in, and dr galapo, who was training/attending/supervising/whatever they call that; and two women--one who i never really saw and one who was (my favorite because she was the nicest) posted at my arm to get the blood out.

now, this happened to me right before they put me out for the biopsy and before dr kremens started the spinal tap--i started to feel really fearful and almost out of control, like i was being experimented on and couldn't escape. it got resolved in the biopsy by putting me under. it got resolved in the spinal tap by my asking the doctor about a billion questions. but this was weird because i felt so outnumbered, i was lying on my stomach and couldn't see what was happening, and i didn't feel that the blood patch was 100% necessary--i kept thinking that maybe if i waited another day the pain would go away on its own. i had the kind of feeling that the world was getting really small and existed completely within that procedure room. i wasn't myself. i didn't feel that i had any control over what was happening to me. i really was terrified. the only thing i had any say about was whether i was going to lose it right there in a relatively simple procedure.

although the moments are fewer and farther between, i still have blips of realization that what i'm dealing with here is my central nervous system. this isn't like a broken leg or even like a bad heart. if this gets messed up, i'm not me anymore. i could lose a kidney and still be emily. i could have open heart surgery and still be emily. in matters of the brain, i have so many questions about what makes me me. i'm already not the emily that i was two months ago. i feel the need to mention things to stean that someone should know on my behalf--like how claustrophobic i get in the MRIs, but if i'm blindfolded, and can't see how close the space is, i'm okay--in case something happens and i can't say things for myself. i'm sitting here right now, feeling this awful tightness that is my own blood intentionally misplaced inside my epidural cavity, thinking about all the things that could go wrong because of some mistake--a stroke, an aneurysm, an embolism, i could die in my sleep. this is a colossal waste of my energy, but deep down, no matter how brave or strong or relieved or informed i am in my multiple sclerosis, i'm still a kid in the dark, surrounded by unfamiliar noises. this is what i will have to work hardest to live with--the inevitability of the unknown.

they got my vertebrae up on the monitor. it looked like an x-ray. i asked where the spinal tap had been done and dr galapo pointed out a grey line. he had the neurologist do the patch one vertebra up, which didn't make sense to me, and i probably should have asked about it, but i didn't. i only have one needle mark in my back, though. i don't remember having been given anything to numb the skin, but i must have been, because they put a decent sized needle into my back and i only felt pressure. i could see the needle on the monitor, and once it was in place, the woman doctor numbed my left arm at the inner elbow with lidocaine and inserted the needle. i watched. i've never been squeamish about needles or shots, but there have always been receptacles on the other end of those needles with either something going in or coming out. this needle just sat there in my arm for a bit, then she opened the valve and suddenly my blood was running down my arm and i felt like the room had just been spun like a top. i told her i'd better not look at what she was doing for now, but i could still feel my blood, all nauseating and warm, running out of the needle.

she put a vial on the end of the needle and it filled with blood. then she handed it off to the neurologist. the blood would have to be injected quickly or else the blood would start to clot and be useless. dr galapo said i would start to feel something in my legs and head as the neurologist put the blood into the needle in my back. i didn't feel anything at first, but then felt a tightness in my lower back. it hurt, so i said "ow". and dr galapo told the neurologist to stop for a bit. and then once the pain wore off, he put the rest of the vial in. but i was still okay, so in went more blood, until i felt like my upper half and my lower half were going to curl up like one of those fortune telling fish. it wasn't pain, really. it was painful, but it was more of a tightness. that makes sense, i guess--fluid was being injected into a space that didn't exactly have or make room for it. 28 cc's. 28 milliliters of my own blood now resides in my back. and it sat there and congealed and plugged up the leak, just like it was supposed to.

maybe it was having had ridiculous headaches for 5 days straight. maybe it was the procedure itself. maybe it was the smell of the betadyne. none of it made sense. they cleaned up my skin, and that was it. i had to lie down for about half an hour. then i hung out for another 15 minutes or so, just to make sure the headache was gone. after that, i got my stuff and walked out. the appointment was at 1:00. i left at 3:30.

now it's after midnight and i feel like i have a giant rock crammed into my lower back. it's not muscle sore or skin tender. my actual innards hurt. this should break itself up in the next day or two. blood patch. it's a terrible name. terribly uncreative. at least "lumbar puncture" sounds clinical and exact. blood patch?

no more of this please. i want the bruises in my arms from having blood drawn to go away. i want my vision to return. i want to be able to taste my meals. i want to feel like things are starting to norm. i'm so tired.

Tuesday, May 18, 2004

1 out of 1000...

came home from work this morning because i was sitting at my desk in tears with my post-spinal tap headache. i tried, i really did. and although i'm not thrilled with my job, anything was preferable to the thought of spending another day lying down in my house. i was okay for the first hour of being awake. and by the time i got to work i had a little headache, but totally tolerable. unfortunately it got worse and worse until i nearly snapped at people on the phone for talking too much and it became painfully obvious that i didn't need to be at the office.

the bad part is that i'm supposed to be in DC tomorrow for a meeting of all the gung-ho princeton review directors in the region. the plan was that karen and anne and i would leave after work in a rental car and would stay overnight in arlington. i've been honestly looking forward to that part--spending some time with those girls outside of the chaos of work. but unless i can lie down for the whole drive and the meeting tomorrow, it's kind of silly for me to go.

i had called dr. pruitt's office first thing in the morning, to let her know i was still having headaches and that my sense of taste is all messed up. i went home at about 11:00, after sitting forever in my boss's office, in a slumped over position, my fingertips pressed against my temples to try to find some relief from this godawful headache. my boss, who is ever in her own world, wanted to show me pictures from the executive director meeting, until i said to her that i was in a lot of pain and needed to get home where i could lie down.

dr. p called at noon, told me to stay horizontal and to call her at 4:00. she said that dr. kremens had told her that my spinal tap had been very easy and sometimes when those things are too easy, i.e., if there isn't really any bleeding, small leaks of cerebrospinal fluid can happen, resulting in low pressure in the head. if the headache was still there at 4:00, she wanted me to have what's called a "blood patch" procedure, where blood is drawn from my arm and then injected into the spinal tap site. the blood clots naturally and forms a glue, clogging up the leak and relieving the headache.

so, 4:00 rolled around and the headache was still there. i called dr. pruitt and she said she was going to order a blood patch for tomorrow. so, i'm not going to DC for any meeting. i called work to talk to my boss, and told her that i'd send an e-mail to the women who had arranged the meeting, cc'ing her and her boss, explaining what was happening, and passing along my apologies. she, on the other hand, felt that that message shouldn't come from me, that it should be from her and be as vague as possible. not the approach i would have taken or that i felt was appropriate, but she's my boss and i'm not exactly up for pissing her off these days.

tomorrow. relief in sight. and i shouldn't take caffeine pills in the evening because they keep me up waaaaaaaayyy too late.

i read on that 1 out of 1000 people who have spinal taps need to have a blood patch done to stop up a spinal fluid leak. leave it to me to get something rare. jesus christ.

Sunday, May 16, 2004

(this is) spinal tapped...

so, that whole waiting-until-august-to-get-an-appointment-with-my-neurologist thing worked out. i got in to see dr. pruitt on tuesday, spent about two hours with her talking about the disease and what we would do about it and what it would mean. she wanted me to have a spinal tap (official name: lumbar puncture, which honestly doesn't sound much better), because, as she said, that's what the textbooks say to do. i asked her if the results of the spinal tap would change her thoughts about putting me on "disease modifying drugs", and she said no. but she wanted the test done so that we had all of our bases covered. then i'd start on a once-a-week intramuscular injection called avonex.

i asked her why this was first being diagnosed as a tumor and she said that MS lesions typically aren't biopsied, but when they are, the cells look weird because of the inflammation. since most pathologists aren't coming into contact with biopsied MS lesions with any sort of regularity, things get read as low-grade tumors (i.e., what happened with me, and this is certainly in line with the excruciatingly long amount of time i had to wait for the pathology report). i also told her that in all i've read, seizures aren't listed as onset symptoms of MS and asked her what that meant. she said that, although it's a rarity, she's definitely seen patients who have found out they had MS through seizures. stean said to me, when we left dr. pruitt's office, "leave it to you to have something rare." leave it to me.

the spinal tap was done yesterday (friday), and the procedure itself was a piece of cake. it was done by dr. kremens, who i believe may be the nicest doctor ever in the world. the looked like my cousin ben, only maybe 25 or so years older. and, as luck would have it, he was an attorney for seven years before he decided to go into medicine. so i talked to him about law school the entire time he was doing the tap.

here's how the spinal tap was done... first i was positioned so that i was seated but leaning all the way forward, curving my back as to maximize the space between the vertebrae. dr. k found the space in my back that would be best to do the tap, about in line with the top of my hip bone (note: the spinal cord only goes about 2/3rds of the way down the spine, so there's no danger of hitting any major nerves with a spinal tap), and marked it with a pen. then i got two shots of lidocaine, one shallow, and one (which stung like hell) fairly deep. once the numbness set in, he inserted a thin hollow needle (i think he said it was a 22 gauge needle, which is smaller in diameter than the post of an earring) into my back that had attached to it a tube and i'm assuming (of course i couldn't see any of this) some sort of valve system that would allow him to drain the cerebrospinal fluid. i asked if i could see my spinal fluid when he was finished and he said i certainly could.

(at this point in the tap, i started thinking about how unbelievably messed up it was to have a freaking tap installed into my back. this feeling was not unlike the experience i had in the hospital when i was connected to the IV and the electrodes.)

he took four vials of spinal fluid from my back. four vials of clear and colorless fluid. i don't know what i was expecting my spinal fluid to look like, but i didn't think it would look like water. i guess i thought it would be more body-colored--yellow or pink or red or something full of stuff. dr. k said that if it had been cloudy or colored, that would have been some sign of bleeding or infection. i asked if he could tell anything about presence of MS from eyeballing it. he said, as i suspected, that needed a microscope.

and that was it--he cleaned off the betadyne, put a band-aid over the puncture site, had me lie flat for a little while, and that was that. i felt fine when it was finished. no headache, other than the rush to my head when i was able to stretch out from the curved-up, head-down position i was in for the tap.

adrienne was my ride to and from the hospital. she was in town for the week, and she brought me an autographed picture of will ferrell which, as soon as i can find a suitable frame, will be featured prominently above my mantle. spent the day with her, watched movies, she beat me in scrabble (further proof that i'm being as honest as possible here--i don't take scrabble lightly).

the headache started to set in around late afternoon. and it stayed with me all weekend. this was the weirdest headache--like an extreme version of a sinus headache; my brain felt like it was a balloon in a vaccuum-sealed container in somebody's science-experiment demonstration of how pressure works. when i would lie down, it would subside, but sitting up or standing was pretty much out of the question. it had me in tears a few times, partially from the pain, and partially from the inconvenience of having to spend my entire weekend lying down. this headache didn't respond a bit to any sort of pain medicine, certainly not to the two aleve, the four aspirin, and prescription strength ibuprofen i tried to treat myself with.

i thought it was gone by saturday night, but it must have been the influx of caffeine during the day, because sunday morning it was back.

oh, and did i mention that i've lost my sense of taste, too? i'm almost positive this is because of the carbamazepine, but it's exceptionally annoying and has made eating miserable. food has become tactile and bland, and kinda nauseating.

Monday, May 10, 2004

no more waiting...

august! AUGUST?!?! what kind of neurosurgeon's receptionist tells a newly-diagnosed MS patient she has to wait until august to see the doctor?!?!?! jesus.

i called mary ellen at dr. grady's office and left her this big long message about how i'm sure she understands that this is a scary time and i have so many questions that need to be answered and if at all possible could she intervene and get me in to see dr. pruitt as soon as humanly possible.

i've been very nice up to this point. i think it's time i start to get a little pushy to make sure i'm getting what i need.

Sunday, May 09, 2004


last week, on the day that i called out sick, dave and i were sitting in washington square park for a while, talking about the stuff that we talk about. and one of the things that came up was his trip out to san francisco one summer that turned out disastrous. i won't tell that story here, as it isn't mine to tell, but the gist is that it is a classic tale of one getting one's hopes up, even though there isn't a lot of evidence to support that hope, and then having those hopes and all of their expectations thrown unceremoniously in the trash. it might also be helpful to add that this story is also one regarding matters of the heart.

so, we were talking about that and laughing about how important and earnest things felt at that point in our lives and about how impossible it is to recognize that some things really don't matter while you're standing in the middle of them, feeling like lloyd dobbler in _say anything_. and i mentioned to dave that most of the stories in life don't have happy endings.

how odd is that? it's true--most of the things we want don't end up happening the way that we want them to happen. we believe and dream and tie up so much energy into wanting to get the right boy or girl or needing to be in the right place or find the right job and rarely do things work out that way. we can't will them into existence by sheer force of desire.

but why do we follow these dreams? even when all rational and logical signs are practically screaming that they're not going to pan out? people are completely blind and kind of stupid, but the possibility, no matter how remote, that things just might work out in our favor keeps us going. and then the resolution those desires get always comes in some other form. when we're finally able to let go, or to accept the way they do work out, we walk away, a little disappointed, but better for having gone through it. somehow, those big wants that once consumed us turn into character building learning experiences; tiny stumbling blocks in retrospect that make us stronger along the way. fodder for stories told among good college friends.

so is it the ambiguousness that motivates us? is it the not-knowing that compels us to see it through to the end? is hope our downfall and our triumph?

maybe that's why we cling so tenaciously to faith. it's the one thing that we desire that can never be truly resolved. never in this life. sound hopeless? not to me. sounds beautiful. makes all of the ambiguity seem a little more comforting.


good god, never have i felt so humiliated in my life as i did last night. i'm not even sure why i'm writing it, other than that i want to remember it, and that it will most likely happen again, and somehow that makes documenting it worthwhile.

we were sitting in the living room, stean and i. just sitting there, not doing much of anything, and i started to feel so tired and out of it--i would go into stares in which my eyes would start to blur, and i would have to jar myself out of it. so i leaned my head forward and covered my eyes with my hands and then i started crying. not like a sad cry or an angry cry or even like a scared cry. it was as if i had to unleash something, get something out in the open. it was an ugly cry. it was as if the cry were having me. i cried and cried and cried. and i felt like i needed to get away from the room with stean and the dog and the cats so i got up--still crying--and walked toward the stairs. stean didn't move--he said something like, "i'll let you be--i know you need to go through this." i felt so weak and powerless and i tried to climb the stairs, but it turned into more of a crawl. and the tears were all over me and my nose was running all down my face and i felt like i needed to get away from everything.

i only made it to the landing on the second floor, so i curled up there and cried and cried and cried and cried, tears and snot everywhere, forming puddles on the ground. i kept saying over and over, "what do i do with this? what do i do with this?" i don't know if i was talking to god or myself or if these words were part of the crying that was possessing me. it was so surreal.

all of this has been surreal. or hyper-real. if i let myself think about it, it's as if i'm watching myself go through it--as if i'm in the corner of the room looking at me talking to people or reading about it or having a headache. seeing myself with multiple sclerosis from afar, because i can't do it yet from within. god, i don't know what's going on. a couple of months ago i felt that i had a path, a plan. i knew what was going to happen with my life, at least in the next few years. but that has all been taken away from me. i can't say for sure that i'll make it through the rest of may without taking any sick days, let alone be okay to wear an orange bridesmaid dress in amy's wedding in july or--sweet christ--start school in august.

i want to have babies and i want to have a happy career and i want to grow old. i want to do these things without assistance, without drugs. that is absolutely not possible anymore. i've been so heartachingly aware of the people i see who walk with canes or walkers or who are in wheelchairs, particularly if they're younger than the age that one would expect to see someone using those aids. all i see is myself. i see me in the wheelchair. i see me with the grocery bags tied to the front of my walker because my hands aren't free to carry them. i see me, compromised and incomplete; bionic and sick.

"what do i do with this?" over and over and over. my sobbing must have sounded so awful. from in my head it sounded hollow and discordant and unfamiliar. i was so ravaged with this fit, but i felt somehow detached from it. i was lying on the ground in the fetal position, my head soaked by the puddle it had created on the floor, staring at this rubbermaid box stean has with a bunch of odds and ends in it. not thinking about it, but staring at it. it was the only calm in the storm of noise and tears and snot and anguish streaming out of my body. but the calm felt that it was mine, while the torment belonged to someone else, something else. my body, maybe? or maybe to that girl who just got the multiple sclerosis diagnosis and who was told first of all that it was a brain tumor. that girl, emily. i don't know her. i don't know what to do with her.

i would calm down, catch my breath, try to rub some of the tear-puddle into the hardwood floor. i'd get a moment's rest, and then it would start up again. i don't even know what i was feeling. all i could think was about how much i wanted to scream. so finally, i did. and then, i got up, went into the bathroom and washed my face, and cleaned up the puddle.

it didn't pass that simply, of course. i went downstairs and collapsed into stean's arms and burst into tears again. and here i am, about twelve hours later, still reeling a little bit, and definitely embarrassed by the whole scene.

dave and i were talking the other night about why memoirs/autobiographies are worthwhile. the act of writing about oneself seems so amazingly selfish to me. i am under no delusions that this weblog exists for any reason greater than my own selfishness. dave, however, my MFA-trained writer-friend, and possibly my dearest friend, said that it has to do with creating a truth. people write about themselves because there is something about their experiences that is true.

i think back on what struck me most when this whole thing started 47 days ago. there were two things i needed more than anything else--to be able to talk without limits about what i was feeling and thinking and experiencing, and to have someone talk without limits to me who had been through what i was entering into.

those have been the hardest needs to satisfy so far. and so there you have it--i guess that's why people write memoirs. and why people read them. we live in a world that's so communal and yet so lonely. the difficult stuff, the stuff that throws a spotlight on our imperfect nature, doesn't have a manual. it's why the self-help industry has been so successful, but in all truth, nobody can tell us what specific steps we need to take and then all will be okay. we just have to realize that we don't know much of anything and then go through the hard stuff head-first and on our own. i think that loneliness is absolutely necessary--how else do we figure out what we're made of? but we need to hear those stories that tell us that other people came out on the other side okay. because we can't possibly handle our frailty and our loneliness without a little bit of hope.

(i now officially sound like an idiot. if i'm not careful, i'm going to start throwing around words like "self-actualization" and start using aromatherapy. so i'll stop for now. i've said enough.)

i may not know the answer to the question "what do i do with this?" for a long while, but hopefully someday i will.

Saturday, May 08, 2004


talked to dr. grady yesterday. he said the following: "your diagnosis is multiple sclerosis". so, so much for the maybes and the we-don't-know-yets and the guesswork. i've got MS. now my life will be different. for the rest of my life, i'll have multiple sclerosis. it could be really bad or it could be easily manageable. i don't know. and i won't know. even if i have another relapse soon, i won't know how bad it could be.

there is so much unknown about a disease (disease!!!) like MS. les, my boss at my job in boston, went downhill quickly after his diagnosis. other people go for years and years and years and years without any noticeable symptoms. obviously i'd like to experience the latter, but just like i didn't get to choose whether i had a brain tumor or MS, i don't get to choose the course that my disease (DISEASE?!?!) will take. i just want to get in to see dr. pruitt as soon as humanly possible and get started on some sort of treatment plan.

when my phone rang, i was outside with dave and jessica and stean. and while i was on the phone, joe and laura showed up. at the time, having all of those people around was too much--i had to leave and take the dog for a walk so i could escape from the words that had just been exchanged in my living room--but i think it was probably for the best. what good would it have done me to have been by myself? of course, i wanted stean there, and he was there--he came inside with me while i spoke with dr. grady. and then dave came in to see how things had gone, and he was able to tell jessica and joe and laura, something that i don't know that i would have been able to do so soon, even though i wanted them all to know. i called dad and daniel, but calling someone is different than having to tell someone in person. on the phone you only hear a voice, and vocal inflections are relatively easily controlled. in person, someone's facial expression will always give away what he or she thinks. i wasn't ready, so soon after that phone conversation, to have to read my friends' facial expressions. i know that crowd to be compassionate and encouraging and optimistic, but still, it's an MS diagnosis. it's not pretty. none of this has been pretty.

but do you know what stean said? when i told him how the conversation with dr. grady had gone, he looked at me and he said, "okay, so what's our next step?" this is so tough for him, too. but how amazing that he's doing this with me! that he sees this as changing his life, too! he hasn't batted an eye at any point in the past six weeks, and i have no reason to think that he will. i'm lucky. i'm truly truly blessed to have alongside me the people that i have.

another thing that dr. grady said was that it is his opinion that having MS is a much better diagnosis than having a brain tumor. i asked him if that included a benign brain tumor and he said absolutely. joe said the same thing--that he's glad, personally, that it's MS and not a tumor. so i've got two doctors who see this as somewhat positive.

...but then, i had a medical student, one of my MCAT teachers, holler after me as i was leaving the office yesterday, "it's better to have a brain tumor than MS because a tumor can be operated on!" no shit. but this was not something about which i had a choice. this was not something that i could let myself wrap in my preferences. it is my preference that this doesn't happen at all. it would have been my choice to be completely normal. i called dad after she had said that to me (i was blazing mad at just how unknowingly insensitive it was) so angry at her and at me for ever having talked to ANYONE about this. because as soon as the words leave my mouth, the news is no longer mine. it is free to float around and take its own form and it has the potential to be heard totally differently. and that's something i have to learn to accept, because this isn't the first time this will happen. the world is full of people who believe that they know more than anyone else. i believe that the vast majority of the things that people will tell me will be done so out of some motivation to be helpful or encouraging, but i have to learn to be very selective about what i listen to. dad said that grandma is all full of this idea that i can cure myself with bee venom. i guess, if that's what she needs to think in order to bring some sort of peace about this for herself, then that thought is worthwhile. but under no circumstances do i need to make my decisions according to what people who aren't intimately involved in this process (specifically, me and my doctors) have to say.

at least i can still go to school this fall. i want to learn how to make this diagnosis a motivator for me, how to turn it into something that will make me want to work harder and use my energy for good things. that's no small challenge. but then, neither is multiple sclerosis... i have to believe that i am up for this, simply because i'm foolish if i let myself believe that i am not.

Tuesday, May 04, 2004

sinking in...

i bought this book today about dealing with the first year of a multiple sclerosis diagnosis. god, i can't even read it--the words don't even register. i'm trying to find out about this disease so i can make informed decisions and so i can have informed reactions, but everytime i begin to read up on it my head starts spinning. i can't believe this is real.

i think i'd rather die than be paralyzed. i'd rather die than dwindle slowly away.