dwindling weekends...

it's saturday evening, "a prairie home companion" is on the radio. stean is here reading. this is completely opposite of what we should be doing. our total number of weekend days (weekend days only being saturdays and sundays) remaining in philadelphia is four, and our weekday evenings are quickly being spoken for by friends and obligations. somehow, though, rushing to get everything packed and ready feels like too much in this moment. i know i'll be getting things done later in the evening, but now, i just want to be here listening to the radio, with my dog asleep by my side and my boyfriend feeding his comic book addiction by my other side.

yesterday i saw the neuro-opthalmologist, who said my eyes look perfectly normal and he isn't able to offer me any insight into why i'm still having headaches every day. i've got to get a new prescription for my vision, though, and also new contacts, more expenses for which i don't really have money to cover. i've got to do it, though. i have to. i've been wearing my glasses, which are weaker than my contacts, but my contacts are so old and dry that they're murder on my eyeballs, especially in the humid, hot, dirty summer air.

in the visit with dr l, after he put the drops in my eyes that would dilate my pupils, he brought two residents in with him and asked if it was okay if they looked at my eyes. i said it was fine. so as dr. l was going over my history with them, when he got to the point about how i was at first diagnosed with a brain tumor, one of the residents said "wow", kind of in a "hey cool!" sort of way. this, of course, was inappropriate, so i said, with the intent of putting this kid, who was about my age, "yeah, it's been an interesting year." the other resident was more in touch with things, and showed some empathy. i swear, don't they teach bedside manner to these med students in these fancy med schools? whatev. it's cool.

but here's the part i wanted to write about. this morning stean and i went to breakfast and he was telling me about the boyfriend of this girl who i hesitate to refer to as a friend, even though stean would do so (he's much more kind and forgiving than i am) and about a story of him (the boyfriend) when he was in africa for the peace corps. and it made me think that maybe someday, when we're older and retired, that doing some work for the peace corps might be a really good thing to do.

cut to last night, when i was at tattooed mom's with a girl i work with and a friend of hers. this particular colleague of mine demonstrates zero tact and zero attention to what is appropriate or respectful. so she was kind of announcing to her friend about how i had some sort of tumor or something in my brain and how i was partially blind and disabled and stuff. but anyway, her friend, who has albinism, was telling me that he has a friend who has MS yada yada yada and he used the word "degenerative". it wasn't meant in some mean way, it was just said in a matter of fact, one disabled person talking to another sort of way. but, degenerative? ugh. it's such a harsh, ugly word.

so, here i am this morning with stean, he's continuing on his story about the guy in the peace corps, and all i can think of is the word "degenerative" and that word is just swimming around in my head, hovering in front of my eyes and ears, with a weird echo effect. degenerative. and i think of my idea that stean and i join the peace corps when we're retired and i realize that for me it just might not be physically possible. so what do i do? i start crying, in the middle of the 10th street pour house. not sobbing or anything, but definitely tears.

the thing is, blog, i'm very very very much in denial. whenever i try to think about what it means to have this disease or how it could possibly effect my life down the road, it's like my brain freezes up and the world around me gets sucked in really close. i was ready to have a brain tumor--i was up for it and i knew what it would expect of me. with this, there's really no certainty except that there is uncertainty. it's like god is playing on my worst fears.

magnetized...

had another MRI last night. my wait time was nil--i didn't even have enough time for the ativan to kick in before they were putting me back inside the ol' tube. it's amazing how frightened and anxious i get in the middle of that magnet, which by the way, is called a bore (http://electronics.howstuffworks.com/mri.htm), even though i know it's just a harmless test and that i can get out of it very easily if need be.

i still swear that my brain twitches. maybe it's just electrical current running through things at different points, but i can feel my brain move, like a reflex or a jolt. i have to remember to ask dr p about this when i see her on monday. i'm sure she'll think i'm insane, but i don't care. or else i'm being paranoid and a hypochondriac...

the really bad part about my MRI is that before i left the magnet area, i glanced over at the screen that had my scans up and there looked like a lot of little white spots. now, i can't be definitely sure that it was my brain, but it would make the most sense that it was my brain, since it was me they had just scanned. i also can't be definitely sure that what i saw in a split second was an accurate reading of the image. it could have been the ventricles or something that were causing lighter patches. but i definitely saw a large white patch, which is probably the stupid lesion that's been with me since march 23rd, and maybe it's never going to go away and i'll never regain the sight i've lost and i'll be on this carbamazepine for the rest of my life, too.

i'm tired of things being for the rest of my life. jesus god.

in other news, my brother and i got the same letter from my grandma about how she's worried that we're falling out of god's graces because of the lifestyle we're leading right now. i could be wrong, but i'm pretty damn sure she's talking about how we both live with our significant others (the only other option is that she's upset that we don't vote republican). this, mind you, is the third letter i've gotten this year from my grandmother criticising something i've allegedly done that has cast a shadow of shame and hellfire on my soul. frankly, i'm hurt and offended by it. realistically, however, my only recourse is to respond to her with love, because i know in my heart that she's only acting out of love for me and the duty she feels to her own beliefs and to me as her granddaughter.

later than i think...

well. well. well. i've not been the best about keeping up with my posts. much has gone down since i last wrote. stean and i have a place to live in pittsburgh, i got my laptop computer (am writing on it now -- holy crap wireless internet is the awesomest thing EVER!), i have my class schedule and my first law school assignment (to read _a civil action_ ugh), amy and nick are married (!), my cousin and his ex-fiancee are back together, and at this point i'm less than 4 days away from putting in my resignation at work.

let me just for a bit do some writing about last weekend, when i returned to good old south bend, indiana, with orange bridesmaid dress and dutiful boyfriend in tow. stean and i flew into chicago on the 15th, and got a ride with brock and metzger to south bend.

we stayed on campus in st. ed's that night. i had no idea that being in a dorm as an adult would actually be fun. maybe it was the nostalgia factor, or maybe it was just the novelty of it all? signs point to nostalgia, however... those dorms have a smell about them. i don't know if it's the old wood or the cleaning products that are used, or the generations of boys who have slept in them, but there is a distinct and benignly comforting scent to all of the older dorms at notre dame. stean and i slept on plain sheets in single beds with the ND-issue blue wool blanket. it was quaint and cute and heartbreaking, all at the same time.

and oh, notre dame. god, i've turned into one of those sentimental alums who force their families to return to campus as if making some sort of spiritual pilgrimage. i dragged stean all over the place, pointing out where i studied and where my classes were and where my friends lived. also, i forced him to agree with me that notre dame is THE MOST beautiful school on the planet. had he disagreed, he may have found himself a single man.

thursday night we had dinner with the schosslers and some of the perdiews at this pizza place which isn't as good as rocco's (closed for the summer) but was still pretty good, then went back to amy and nick's room and visited and laughed and nick told us all about the concept of "balls from the back", a notion that i don't want to explain but that i do want to remember, for my own reminiscence's sake. and pam came out and met us at the mariott bar. she's all engaged now, i suppose she's next from that group of friends to take the walk down the aisle. pam gave stean and me a ride back to campus at the end of the night, and before we went in to the dorms, i asked stean to go with me to the grotto to light a candle (if you don't know what the ND grotto is, here: www.nd.edu).

...you know, it's been ten years since i was a college freshman, and all of the important events of my life have happened within those ten years. i've lost my mother, i've moved on my own to a new city--twice, i've fallen in love and have had my heart broken, i've been without a job, and of course the big one--i've been diagnosed with a life-altering disease. in some respects, i am a completely different person than the girl who first set foot on that campus in august of 1994. that felt really real when i was in south bend last weekend. i'm gone through a lot of change. but despite it all, the things that have remained constant--the relationships i have with my college friends, the way the great hall in o'shaughnessy looks in the afternoon, the feeling i get when i know i'm surrounded by good people and good things--are an amazing relief. somehow, in all of the changing i've done as a result of intention and circumstance, i've managed to hold on to the fundamentals. i don't know, maybe i'm talking nonsense here. i'll get back to my weekend...

and so stean and i each lit a candle at the grotto. it was really quiet--only a couple of kids on the benches nearby (the campus was AWESOME without all of the students around--it gave me license to feel all nostalgic, kind of in an invisible sense). and as i stood there watching the candle i had lit in the midst of the hundreds of other little flames, asking god to help me find some peace and strength in the midst of so many unknowns about my health, i started to cry (i'm starting to cry right now, too), thinking of all of the times i had gone to that very spot as an undergrad to try to give my troubles away to a tiny bit of fire...

i have overwhelmingly fond memories of college. my grades were an embarrassment and i skipped too many classes and i had crushes on just about every boy in the school at one time or another, but those four years were really really good. i guess one of the things that made my little candle-lighting visit to the ND grotto so emotional was remembering that the times that the grotto came into my life during those four years were the times when i needed to ask for some divine intervention, the times when things were not so good. a lot of those times had to do with mourning my mother's loss. i guess in hindsight, i'm very fortunate to be able to see those moments as part of my college experience--they never got to the point where they controlled my college experience. i can still say, even though losing my mother was completely devastating, that there was a whole lot of good going on in that period, too. i'm lucky to have had the friends and environment that i had.

on friday we stopped in at the basilica, and again i was moved to tears. perhaps this speaks more to my spiritual fragility than anything else, but that church is so affecting and there was an organist and a vocalist rehearsing in the choir loft and when out of the silence began "crown him with many crowns" it simply broke my heart. it was like being in a magical but forbidden place, like heaven itself--i felt the need to touch everything a little longer than usual, to breathe in the air a little more deeply than usual. i wanted to take it all in and hold it inside, as if maybe something in that space, in that fancified building, was going to give me the answers to all of the questions that have been crowding my heart in these past months.

i can't say that it helped or made my life better or anything like that, but being at notre dame for those few days was, just like my thoughts on my days as a student there, really really good. the rest of the weekend had great moments, too. stean and i met valerie sayers for lunch on friday at lula's (which opened back in my day, and it's nice to know that it's still there), where i had perhaps the best salad i've ever had in my life. valerie looks great, and it was awesome to see her and visit with her, especially since she's been such a great cheerleader for me lately. also, it's cool to have reached the point where i can talk to an old professor like a fellow adult, where all of the preconceptions and formalities have for the most part fallen away. i think on some level, i want to be valerie sayers. stean told me as we were walking back to campus after lunch that he thinks that valerie and i are a lot alike and i took that as a great compliment.

friday night was the rehearsal and the rehearsal dinner (at the lasalle grille). the food was awesome (unfortunately, better than the dinner at the wedding, but oh well). amy gave us bridesmaids lockets with two chambers in them and our first initials engraved on the front. jessie and i decided that we're going to put pictures of our celebrity crushes in our lockers. jessie and i are also presently engaged in a "nerd-off". it's not the reason i've been wearing my glasses lately, but the glasses-thing is an asset.

after the dinner we met up with other folks on the 3rd floor bar of the lasalle grille. tony and carlo showed up, and tony silva and the boston crew, and pam and joe, and jen c. we could have all been wearing crap and could have been together in a prison cell and i still would have been as happy to be with all of those guys.

saturday was breakfast with amy and the other girls, then hair and makeup, then dressed, then pictures pictures pictures, and the wedding itself, which was beautiful with the flowers and the service and even the orange dresses (!). i managed to get through my reading, from song of songs, about my beloved is like a stag, a bounding gazelle, and come my beloved come, all with a straight face, and amy and nick looked so happy and at peace all weekend long. i've had my differences with nick from time to time, but he's a good egg, and he loves amy and amy loves him and so i'm okay with letting him marry my friend.

the reception had ron as a special surprise guest, which was not only awesome for me because i haven't seen ron in many moons, but it meant that stean wasn't the only man of color in attendance. dancing was good, company was great, i discovered that if i take aleve regularly, it offsets the headaches and i can drink more than 2 drinks. just don't tell my stomach!

and then there was the after party and the late night visit to nick's patio (as in the diner, not as in the groom) and the breakfasting the next morning and the hangovers and the hugs and the saying goodbyes. and i'm so so so so so completely grateful that i don't have a brain tumor and that i could have that time with those beautiful, brilliant, funny, amazing people!

alas, and now i'm back, with 3 weeks before the move and so much to do. but i won't think about that now. now i'm filled with happy memories of last weekend, and of college, and thoughts of how fortunate i am to have these people in my life, even if i only see them seldomly anymore. now i'm going to fall asleep thinking about the good things, which have always seemed to outweigh the bad. i'm going to believe that the good will always win out, and that whatever the bad may bring, i'll manage it for the best.

this was a super stealthy photography job courtesy of stean. we had a good laugh about this with tony and derek while waiting in o'hare to catch our flights back from amy's wedding.

independence day... 

it's certainly been a boring fourth of july for me. not much going on at all, no hot dogs or hamburgers, no fireworks (which is honestly for the better because the experiences i've had going to the art museum for the fireworks have been way disappointing), no sunburns. we were supposed to spend tonight with joe and laura, but i haven't heard back from joe, so i guess those plans are null.

spent yesterday with chris and jenn in the jersey suburbs. we stopped in at a pier one that was having a big moving sale and i ended up buying four glass heads for $15.90. four glass heads! the size of my own head! oh, the possibilities are endless! put a bulb in them and call them headlights? make them into fish bowls? endless!

have now taken two injections. they're not so bad. it's a little unnerving feeling the resistance my own flesh and muscle has to the needle, but it only lasts a few seconds and then it's over.  it's a lot easier than i thought.  good thing, too, because i've got to live with these injections for a LONG time.  a long time.