atlas

i'm feeling a lot of responsiblity right now; there isn't a safety net for me anymore since A went back to NYC for a break. so many questions to make sure i ask the doctors, so many phone numbers to gather together in case a scenario c happens, little things that i know i need to get or buy or do before i go on vacation in 2 weeks.

it will be my first trip away from dc since february, and they'll be fine without me; it's me that i'm not sure i'll be able to let go so easily. it's only 8 days, but mom's 2nd infusion will happen while i'm gone, and i hate that i have to miss it. i like to think that i'm a comforting presence, and i don't want her to be scared like last time. but it will be really nice to have a break, although i'll still be worried of sinking like the titanic and my floaties won't keep me above water for long enough to be rescued while the ship breaks in half.

and i need to clean my apt before i go, which is the most daunting task of all.

my aching back

i normally don't have problems sleeping. if i do, i take a sleeping pill, but i sleep deeply, dreamlessly, 99% of the time. but last night, i had stress and anxiety dreams so bad that my back hurts and i'm cranky and i'm all wound up. my mom's family is in town, and i'm not happy about it. they're all so self-absorbed and obnoxious. my grandmother is in complete denial after basically ignoring us for two years to deal with my other aunt's cancer, and trying to make it as though my mom's condition isn't really as serious as we're making it out to be. i'm not sure how i'm going to make it through the next three days without blowing my top. they don't get that we're putting on a g-rated show for them, the beige and vanilla version of our daily lives. dear lord, this is going to be horrible.

unsettled, again

i've got that tingly, tight feeling in my lower esophagus (is that even spelled correctly?) that has me feeling off. this time it's a combination of a busy, slightly frustrating day along with the notion that i really need to make a decision in near future about my fall semester of graduate school. i'm totally at a loss as to what to do. if my program offered classes all the time, i'd definitely take the semester, or year, off. there's no way i can give myself to studying when i know what else is happening. but since classes are only offered every other year, and i have no idea if my scholarship transfers, and i'm not sure what i would do about healthcare and money and ways to distract myself, i just don't what to do. i feel like i'm at a crossroads, because i've placed a large amount of importance on graduating in 2 years and getting my life back on track financially (i.e. getting some really money, not just the government's school loans). i'm on hold, and this is one more example how my life has come to a screeching halt while we all just wait to see what the hell the future holds.

how could anyone, including myself, expect me to concentrate or focus? and at what point do i need to inform my professor that i'm in this really terrible situation, and whether i even want to finish this degree at all? am i really going to want this particular degree after i've gone through this experience? right now, i have no answers to anything.

weekend nights

i see all of these people (some young, some not-so-young) who are poised to take on whatever adventure this friday night might have in store. the teensy-tiny denim miniskirts which barely cover anything, the ill-fitting tank tops, it's all on disply for an alcohol-fueled evening. and i watch all of this with judgemental, jealous eyes.

i cannot be a part of that. not that i would, because it's not my thing, but the point is that i don't even really have the option. i need to be available in case of an emergency; i can't be hung-over tomorrow when i need to be cleaning and cooking and trying to decipher what my mom is saying while keeping my father from blowing his top over the slightest thing.

of course i could go out of i wanted to. i always have that choice. but i'm so tired when i get home from my parents' house, and sometimes so depressed even after it's been a good day, that it's rarely worthwhile for me to go drinking because it multiplies my depression. i've never really been a drinker, but i'm really cutting down now. i could be in a great mood, and one drink will make me so upset that i just want to crawl into bed and pull the covers over my head and bawl my eyes out. so, easier to lay off the sauce than deal with that.

but the point being that i'm jealous of the carefree lifestyle, of the never worrying about anything or being the adult or responsibility or things like that. and i know that i'll never really be able to go back. and it sucks.

little rays of sunshine

sometimes, when i'm really feeling low for either no reason or a number of reasons, something happens that immediately makes my greys go away. i remember driving to the post office to turn in a scholarship form for college that i knew that i wouldn't get, and there were a whole list of other reasons that made me feel depressed. as i was driving, i was stopped at a red light behind a schoolbus. the children started waving to me, and i waved back, and they broke out in smiles and waved even more enthusiastically. that happened about 10 years ago, and i still remember it today.

in early october, i came back from researching feeling really down and hopeless, and i had a package waiting for me. it was my birthday neighborhoodie from D. it had arrived three weeks early, and when i pulled it on, i was wrapped in a fuzzy sense of security and i knew that it was from someone who loved me, and i was so happy that i couldn't wipe the smile off my face for hours (and i'm still happy when i pull it on, even now).

today, i came home once again after a day of feeling out of sorts and very upset and wanting to closet myself away from people, and had a package waiting for me. it was from D again-the various package delivery services seem to drop off little bits of uplifting thoughts from him to me just when i need it the most. and i started crying, and haven't really been able to stop. it is just so thoughtful, and sweet, and i know that people, not just D, love me and are worried about me. even though i just want to dissappear into my own world, my friends let me know that i'm not allowed to shut them out. and i'm unbelieveably, overwhelmingly, grateful for every little bit, even if i can't express to them how much they mean to me. and now i'm crying again.

disbelief

everyone experiences illness differently. i don't always agree with the ways that other people handle the situation, and i'm having a hard time not keeping my mouth shut. my outlook is that i want to put my mother first when i'm visiting. if my mom calls for me, i go to her as fast as i can. i put aside whatever i was doing or watching or anything, and see what she wants. ususally, she just wants my company, which is fine with me. my father seems to treat any time with my mother as a chore. he huffs and sighs loudly and makes side comments about how he's always being interrupted. frankly, i don't need to hear it. i spent about 6 hours with my mother yesterday, hanging out and playing cards and doing speech therapy, and i think he spent a total of about 20 minutes with her the entire time i was at the house. she's his WIFE. it was more important for him to get his study in order and the papers filed than spend time with her. the organization apparently took 2-3 days, and could not be done after my mom was asleep at night. and the problem is that my mother can read every facial expression and hears ever intonation in his speech when he's frustrated or annoyed. she's been saying to me that she misses my father and wants him to spend time with her. he cleaned the kitchen while A and i were out on errands today, rather than spending that time with her. the kitchen could have been cleaned at another time. i just don't get it. i pointed out to him that he had undisclosed anger issues (due to several other incidents that happened today), and he didn't agree. i just don't know what to do anymore. it seems like most of the problems and frustrations that i've experienced lately are due to him, rather than my mom, and it makes me angry. he has so much patience with other people, and is so nice to people who do not deserve the time he spends with them, and yet has such limited time and understanding for my mother. i realize he's working through a lot of things, but i'm just sick of it. we're dealing with moths, and he's wasting time. we're having family therapy with a rabbi on friday who is supposed to deal with family tension during end-of-life traumas. hopefully this will be sorted out a little better than it is now, because there's no way we can continue on like this.

my landfill

i'm not a neat person-i'm not dirty, but i'm just not particularly organized (some things, like my closet, are very organized, to the point that every item is hung in the same direction, in particular shades and particular fabrics, etc.). my apartment is continually messy no matter how many times i clean it up. D has thrown his hands up in dispair, and thinks that like the phoenix, i need to burn the place down and start anew. the mess just doesn't bother me. i remember where i put 99.9% of things, and the other .01% is ususally staring me in the face.

i think that my compulsion to be messy was about boundaries and space issues, but i've realized that's not really the entire current explanation. my new thinking is a retake on the idea that if you can't be organized and control your living space, you can't be organized and in control of your personal and professional life. for me, i think part of me doesn't want to be clean and organized in my living space because then i would have to confront the chaos that is my family's current situation, and that simply is not clean-up-able. it is such an overwhelming situation, and if i come home to a neat and orderly place, where every surface is bare and the place feels sterile, then i'll feel even more like the situation is out of control . what happens when your living space is orderly, and the rest of your life remains unbalanced?

another bout of insomnia

i've been up since 4am est, and cannot get back to sleep.

my mother was diagnosed with a brain tumor (stage 3, thalamic astrocytoma/glioma) the first week of may 2004. frankly, the name or type of tumor is vague, but that's because through a combination of denial and optimism, i've keep myself out of the medical side of things for 2 years. my job, as i see it, is to provide the lighthearted commentary and laughter; in short, to be the one that keeps the mood elevated when everything is falling to pieces.

this has been fairly effective up until earlier this year, when the experimental treatments at Very Important Research place stopped working. apparently brain tumors are like the flu virus-they morph and change and become resistant to certain medications. my mother's treament didn't respond to normal chemo/radiation, so we ended up at VIR where she was incredibly successful on the first treament she received. this gave is hope and life returned to normal as much as it possibly could for about a year.

now, the treatments haven't been working, and we're on our 4th option and things are really not going well. but, we still cling to the idea that maybe this one will slow the tumor's growth, although i'm not sure that her current condition is really something that anyone wants to see stabilized, frankly.

and yet, there is a silver lining to all of this. my mom went from being a type-a personality to someone that is seemingly happy and content just to sit and watch the food network (all day, every day-at first it's annoying and grating on your last nerve, and then you start picking up tips and paying less attention to the show's host and focusing more on the recipes). the only thing she seems to want is for me to crawl into bed next to her (i sleep on top of the covers with 2 blankents) and make comments to her about the tv host or the recipe and we have a conversation as much as it is possible to have a conversation with someone who cannot form sentences. i've actually gotten very very good at 20 questions, our version of figuring out what she wants or is trying to say. for many people, this would not be sufficient. but for me, it works. we keep our topics lighthearted, and i get her to laugh, and then my goals for the day are accomplished.