Journal Title

Recap

2008-01-04T00:55:44Z

There is so much to say about the holidays and I don't think I've articulated even half of it to myself yet. I can honestly say I had a fantastic time in Pittsburgh, despite not feeling perfect or of sound body and mind. I had all of these flexibly-set goals, mostly to visit certain people and places, and I was able to achieve all of them. Last year I was functioning moderately well too, but I was doped up on steroids and dealing with more side effects I could admit to everyone, including myself. The most difficulty I had this time around was having to relate, over and over, what I'm up to now, work-wise and such. I don't feel like I'm doing enough, and I'm not financially, and it's depressing to converse about different gigs I have, knowing that they all know: she is not supporting herself. I've become so used to delivering the same sentences over and over though, feigning excitement about what I'm doing and almost tricking myself into believing that I chose this path.

I held my Godson, whom I had not seen in over 2 years. He isn't really of holding-age at 4, so I asked him, "Can I hold you?" and he nodded yes, and I could have died happy right then and there. As I held him, his slightly older brother showed me his stuffed animal, Ribbits (frog), which I remembered because of the bed time rituals and making sure everyone had their favorite stuffed companion. I remembered rocking him to sleep one night, after the rest of them were in bed, and knowing I could put him down in his crib and choosing not to. This is it, I thought, it doesn't get any better than this, rocking a baby to sleep in your very own arms, watching his sleepy eyes watching you back before they succumb to tiredness.

On my last night, I went downtown with my parents to see the ice skating rink, the Santas around the World display, and the department store windows. As I turned from one window, to proceed to the next, a guy my age walked past me and gave me the most sincere smile I've seen in a long time. It was the strangest thing, not the normal flirtatious smile, not a silly grin, not a there's-pizza-sauce-on-your-face smile, just a genuine smile when we locked eyes for 2 seconds. I smiled back, without thinking, and then he passed. I followed his shape, as it got smaller and smaller, never turning around, and at that moment, that profound feeling of dread hit me that hadn't done so in years: I didn't want to leave.

I have never dealt well with transition from one place to another. I am usually fine the next day, but that transition time--on a bus, plane, car, or train--I am filled with dread. I cannot stand the in-between time, the limbo. Inevitably, when I arrive at the destination, the dread turns to sadness and weeping, not because this place isn't a home too, but because it all feels wrong, because I was in denial during the transition time, and suddenly feel dropped in the middle of nowhere. I don't understand why I'm there.

I hadn't felt that in a while because I always WANT to get back to wherever I came from, because it means I will have successfully traveled and "made it", that my illness did not prevent me from completing a trip. It's gratifying and exciting, and also a relief that I'm "done". This time around, I wasn't so concerned with my lack of capabilities; I was semi-confident for once, and therefore devastated that I had to leave regardless. I cried a bit at the airport, just sitting there by myself, but then had my new fear of flying to deal with and distract me. On my way back to Brooklyn from Newark, I was filled with dread, unhappy that public transportation was so quick and efficient. I felt full of anger but I didn't know why. Nothing felt right. I see Ian for the first time in over a week and I quietly unpack, then I sob for 20 minutes. Going to bed was what I needed to speed up the transition, I guess, because I felt "normal" the next day.

Now that everyone is returning to work though, I don't feel "right" anymore. I still have no idea what I should be focusing on, where my life is going, what I want to be doing, etc. I feel lost and confused and not busy enough, now that the holidays are over, but maybe that is also the proverbial winter blues and/or cabin fever, and the inability to hop on my bike and go to the park for an hour. I hope it will pass.

aliciak @ 2007-11-11T22:59:00

2007-11-12T04:37:40Z

Last week, I met with someone who wants crochet versions of some characters for a project he is working on. (And that's all I can say about that, b/c it's top-secret!) While I consider myself a people-person, I find one-on-one meetings like this a bit intimidating. It's a blind date, essentially. Some emailing back and forth, a description of each of our appearances ("I'm blond, pink jacket, and I'll have a bike helmet" -man that sounds bad-ass in hindsight!) Obviously I am not used to these kinds of situations because a) I was always a teacher and not prone to meeting new "clients", b) I have been in a relationship for a long time, and c) I never did blind dates, online dating, etc. (I either didn't date, or I, er, played. ;) )

I was surprised to find myself nervous, all the while knowing that I generally "rock" at these kinds of situations. It was more a case of being out of practice. Out of the two hours we were at this bar, drinking, talking, we probably discussed business for about 20 minutes. I then found myself wondering, "is this normal?" Should we be talking about Wes Anderson films, an old Dell commercial, softball, my family's rocket launches, his going to Studio 54 when he was 16? For some superficial reason I was happy that he had a wedding ring on and had been married for 23 years. But you know, when you're meeting a client who is an older man, and you are a young woman, there's a certain amount of caution that is present. I was more fearful that this project wouldn't be legit than I was about getting hit on. The latter I don't mind and can handle, but a potential creative crochet project going down the drain? Boo. :(

When I stumbled on home, less than a block away, I was more than tipsy but also really excited about meeting someone new who I would have potentially had nothing in common with but instead hit it off more than I expected. I emailed Brenna, telling her at one point that he said, "I never drink this much" and how come I always seem to cause excessive drinking in myself and others at bars? She responded: "You have a connection with people, Lich. That's what's great. They come to you, tell you things they never tell anyone and drink in the meantime." I guess that isn't too far from the truth.

There was such honesty in the way he spoke, describing how he used to get emotional watching shuttle launches or merely thinking about astronauts and their undertakings. Was it drinking, was it meeting someone new, was he always pretty open, was it me? It doesn't really matter, I guess.

If there is one single instance that stands out from the entire night, that hit me like the freight train of emotion I am used to, it is when he responded to a comment I made after I talked about being a teacher and loving children, about how I grew up around a lot of cousins and I was always holding or playing with one. I wish I could remember the exact words, but it was something like, "Yes, I could tell that, that you're good with children and will make a great mother." I have heard a similarly uttered statement countless times, and yet, it always makes my heart jump up into my throat, my body freeze up. How did he know? I spoke so casually about how I used to be a teacher. How could he tell? How can people see that, especially when they don't know me? Regardless of how many times I hear that, and actually because of the number of times, I am scared it will not be true. I feel like all these utterings will jinx me into being a bad mother, or God forbid, never a mother at all. So much hype, what if I don't deliver?

Anyway, in a non-cheesy way, it was magical to me how much insight you can have upon meeting someone new, how in some ways, it doesn't take years and years to know some "important" aspects of one's personalities. I hope it's not just the alcohol, which does tend to open up many people, but something more, in me, in him, in others.

My birthday

2007-11-02T16:26:25Z

See here: http://www.aliciakachmar.com/blog/life/26-candles/

aliciak @ 2007-10-04T22:11:00

2007-10-05T04:02:39Z

Whoa, 2.5 months later...time flies, not necessarily always while you're having fun; more a case of trying not to notice the passing of time at all, as I make statements in my head, such as, "It has been a year since I ______" and "I haven't gone to _______ in 9 months." Those immense amounts of time weigh so heavily on my shoulders and mind, and thus, I try to ignore them. In the same away, immense amounts of thoughts and feelings weigh me down to the point that I can barely breathe. I try to cast those off as well. Sometimes I don't know why I stop writing, here and elsewhere. I've stopped the literal process of writing in a notebook and replaced it with occasionally typing out thoughts in text files and word documents. The small comfort there is that I'm not choosing to type out thoughts because a computer is "better" than a notebook, but because the thoughts are racing so quickly, so forcefully, that I know I can purge faster by typing. In the past few years and maybe always, that is what writing has been: purging. Creativity and quality are of little concern; it is about discarding the disturbing, dense, pressing and DEpressing thoughts that fill my mind to the brim.

That is the convoluted way of saying that I am still writing. I am writing positive and happy things over at http://aliciakachmar.com, all true and sincere, but sometimes I don't feel like that is really ME writing there. It is a life that would be very fulfilling had I chosen it. It is a way to not twiddle my thumbs, a life that I can truly find fulfilling for long stretches of time, until I realize, wait a minute, this is not what I want to be doing.

The less positive things go elsewhere, or simmer in my head.

I find myself still drawn to musical lyrics in an intense way. I feel very capable of expressing myself, outloud and on paper, but there is something powerful and empathetic in a musician's lyrics when they hit the nail right on the head. I listen to a few sentences and exclaim in my head, Exactly! Exactly. Sometimes it's a feeling I was already feeling, articulated in a different way. And sometimes it's a feeling I didn't know existed inside of me, but as my eyes peruse the adjectives, nouns, and verbs, a familiarity deep down rises to the surface. Slowly but surely, another "Exactly" moment.

Recently, the song I am listening to the most is called "Heart's a Mess" by Gotye:

"Pick apart
The pieces of your heart
And let me peer inside
Let me in
Where only your thoughts have been
Let me occupy your mind
As you do mine

You have lost
Too much love
To fear, doubt and distrust
(It's not enough)
You just threw away the key
To your heart

You don't get burned
('Cause nothing gets through)
It makes it easier
(Easier on you)
But that much more difficult for me
To make you see

Love ain't fair
So there you are

My love

Your heart's a mess
You won't admit to it
It makes no sense
But I'm desperate to connect
And you, you can't live like this

Your heart's a mess
You won't admit to it
It makes no sense
But i'm desperate to connect
And you, you cant't live like this

Your heart's a mess
You won't admit to it
It makes no sense
But i'm desperate to connect
And you, you cant't live like this

Love ain't safe
You won't get hurt if you stay chaste
So you can wait
But I don't wanna waste my love"

Exactly.

Slightly unrelatedly, but related in the sense of "this is what's going on with me," I finally saw Mia and Romy, the two girls I have such love for, and who I also have not seen in a very long time. A year. I've really only gone to Manhattan a handful of times in the past 9 months, and those times have been calculated and not spontaneous. It is really because I love and miss them so much that I have not seen them. I have such a pain in my heart, or a void maybe, or a pain because of a void, from not being with them. I cry when I think about them, if we talk on the phone or email. There is something so much more pure and genuine about love for children, as opposed to love for a partner.

I called Mia earlier in the day, but didn't get a hold of her, but I went to Manhattan for something else anyway. I called again, but she didn't pick up. I got anxious, feeling so close (a mile?) and yet, still so far. I decided to walk around. Maybe I could go in some stores, or is there a museum or gallery around here? All of the immensities and intricacies of Manhattan were in front of me. And then I had this profound intense moment: it dawned on me that there is NOTHING in all of Manhattan, in the entire world really, that I would rather be doing than hugging Mia and Romy for the first time in a year. Nothing. I stood there on a rare cobblestone street, staring up at the blue sky and the light reflected on a building, thinking about its picture-worthiness and not caring at all that I forgot my camera. I don't care. I don't care about any of this. God my heart hurts.

I began to walk, with more purpose and determination than I have felt in a long time. I was nervous only because of the onslaught of emotion I would inevitably encounter. When I see them, having run down the stairs after calling me, I am everything at once. Elated, sad, excited, afraid, happy, depressed, anxious, euphoric. There they are, on the sidewalk where our three pairs of feet had trodden so many times together. And there come the tears, that precariously lay dormant but occasionally break through the surface, always there no matter how hidden and repressed. No one has made me cry out of such happiness; on the contrary, I have cried so much in the past year, out of pure negativity and anger. No one has made me this happy in the past year. It is so good to cry like that.

We climb the stairs together, hands clasped, smiles full, stories ready.

Some pics from vacation

2007-07-26T02:08:33Z

We're too cool for school, lookin' hot and drinking PBR.

Ditto.

Drinking and picking at my ankle? I dunno...

Looking pissed; I probably was. Long story...

aliciak @ 2007-07-16T09:07:00

2007-07-16T13:08:34Z

I'm off to the Outer Banks with Ian and his family!

A little of this, a little of that

2007-07-11T22:28:26Z

Things have been going ok lately; each day is challenging, frustrating, and still a reminder that I am sick, but I have found some fulfillment in other things. I have put together different writing and crafting gigs, not enough to make a living if I lived independently, but still money that I can be proud of and experience that is related to my interests. It's not teaching, nothing is, and I still hate that I don't have a "real" job and can't support myself. I let that get me down a lot, to the point that I don't want to live another day if it's not the way I want to be living. And this is certainly not what I'd like to be doing right now, being a dependent woman who does lots of chores because of the unsaid rule that that is my job now. It's that daily sense of failure and submissiveness that makes my Smith degree nearly worthless. I know that isn't true, that I'm not a failure unless I call myself that, but it's so hard not to be able to live your dreams and be proud at the end of the day. I hope that will change, and more importantly, I hope I can be the one to change it.

I can't tell if I'm actually a stronger person, mentally, these days or if I've just tricked myself into filling my day with these little writing gigs and mini-jobs so that I have distractions. I know that so much of what I do is a way of diverting my attention inward to something outward. I bike to escape the house (when I can), sure, but it is much more about escaping my tormented mind. It is so much more pleasant to focus on crossing streets, watching for cars, looking at trees and people, feeling the breeze than to think. It's all about feeling, instincts and not so much about thinking. I rarely think about colitis, or not being a teacher, or wanting to kill myself, when I'm biking. In that sense, I wish I could bike forever, or rather, I wish I could replicate that feeling more often in the daily things that I do.

I have been reading more, a pastime I gave up because for months I decided that I didn't deserve leisure. I didn't consciously decide that, it just happened. I didn't read one book in months because a sick person who stays home a lot doesn't deserve something fun and leisurely like that, I thought. Books have always been gifts to me, words I can interact with on the train, in the car, before bed, on a day off. Reading is a treat and I tried to give it up because I figured I should always be writing, working on a (paying) project, doing laundry, washing dishes, cleaning, cooking, etc. I'm much happier now that I'm reading again, though I do still have a lot of guilt over doing it.

I recently saw the Michael Moore film, Sicko, and it really infuriated me about healthcare. I know he frequently stretches the truth, so I'm not saying I'm 100% a Michael Moore fan, but our healthcare system IS fucked up and most people know it. It is a profit-making business, which isn't so in most countries. Insurance companies try their damndest NOT to treat you. I could go on and on about it, but I won't! You should all see the movie though, just as a way to think a little more critically about healthcare in this country.

I spent 4 hours in hospital clinic today, because I'm on Medicaid and misunderstood that I couldn't see a new PCP in the hospital I like in his actualy private practice. I had to go to this chaotic clinic, where I waited forever, and don't even have the referral (yet) in my hands that I needed. A referral, mind you, for the colitis doctor, who I ALREADY see. I felt so bad watching all these people around me who are obviously struggling and who waited just as long as I did. I still know that I have some safety nets and they may not. It also really makes me want to sell my soul for great health insurance or millions of dollars, or marry someone who will give me either of those. It's sick that a fucked up health care system can do that to you, make it "healthier" for you to work for a mean, blood-sucking corporation rather than in museum education.

I also feel like if things don't change radically with my health, we don't suddenly get universal healthcare, or when my Medicaid runs out, I should put up an ad looking for a sugar daddy who will pay all my medical bills and give me his corporate insurance and an unlimited bank account. There are a lot of fucked-up people in NYC, so I'd bet someone would actually agree to that, probably in exchange for sexual favors. But hey, maybe that will actually fulfill me in that department too, since I don't get many of those b/c of my boyfriend's existential crisis or whatever (What's up sexual frustration, how are you today? Not so well, thanks for asking) I guess a random sugar daddy will be my last resort if I feel like I'm slipping through the cracks.

Recently I was listening to Etta James' "Security", and the words really ring true with what I just said above.

Security, yeah yeah
I want some security
I want security...yeah
Without it I'm at a great loss
Yes I am, now
Security, yeah, yeah
And I want it, any cost, yes I do now

Security is what I want right now
Your love is all right
But I need a little more honey
I can't spend your love
At the grocery store

Lyrics always sound so corny when read without the music. Anyway, I too, am looking for security because love doesn't write checks for my medical bills or prevent me from experiencing clinic hell. This is probably one of those entries I will regret writing tomorrow, but man did that all feel good to get off my chest!

Train Trip to Tarrytown

2007-07-09T03:00:18Z

I've never posted a photo on lj, after 4+ years? Well, behold, Ian and Alicia:

More to come later...

aliciak @ 2007-05-21T12:19:00

2007-05-21T16:53:55Z

I think I've mentioned this before, but I have these dreams that profoundly affect me because of their disturbing content. I only realized in the past few months that these complex dreams can really set the tone of the day and control my emotional response towards everything. I'm still ambivalent about regaining my ability to dream, after steroids-induced insomnia that lasted over a year. My future book should be called A Year Without Dreaming, or Dreamless. After I saw The Science of Sleep (the real French to English translation is The Science of Dreams), I had this revelation that dreams infect my reality and vice versa. Most of us experience the latter, finding bits and pieces of our days and thoughts in our dreams. But, occasionally, I can't distinguish between the two: I'll have a dream, that I don't consciously recall until much later, but I'll think that I actually did something, said something, wrote something, experienced something that really only occured in the dream. This is also a symptom of schziophrenia, which I'm relatively sure I don't have!

Luckily, the dream/reality problem doesn't affect my life too much, but disturbing dreams do. Dreams of close friends, loved ones, myself, or family members dying, plane crashes, car accidents, etc. Most of the dreams, predictably, revolve around issues of death, illness, and pain. Over the weekend, I watched the documentary that Lisa "Left-Eye" Lopes was making in Honduras before her death. (She was in the band TLC in case you don't remember). She had so many premonitions and the feeling that something was following her. Some time during the 30-day trip, a child walked in front of the car that she was riding in (she wasn't driving); the child died from head injuries, but Lopes felt like whatever that something was killed the child, instead of her, by mistake. She dies on day 27 while losing control of her car. They rolled several times after going off the road, down a small slope. Of the many passengers, it's unclear whether she was wearing a seatbelt (looks like she wasn't in the actual documentary) but she was the only one to be seriously injured, let alone die. The whole documentary was eery, raw, beautiful, deep, painful, and thought-provoking.

After I watched it, I started to think about that phrase "died instantly" that accompanies various tragic deaths and ways of dying. It is often the only source of comfort when someone dies abruptly like that, to know that they "died instantly" instead of suffering. But, when she swerved and started rolling, there were still seconds of being alive, seconds of thinking. Was she too much in shock to even think? Thinking of those few seconds is incredibly disturbing to me. Imagine a car driving off a high cliff with presumably even more seconds. Yes, the person would probably die instantly, but that person was alive during the entire fall. Knowledge of imminent death has to be a horrible feeling, compounded by helplessness at changing the course. Those seconds might theoretically be a short time, but wouldn't they feel like the longest of your entire life, because of their weight? To think of that kind of denouement is heart-wrenching.

So, I had this dream last night, part of which involved being in a plane. In general, I am not scared of flying; on the contrary, I get a rush from taking off and landing. I revel in the threshold between ground and air. I'm not ignorant of the risk of flying; I know there is always a possibility of fatality, but every second of life also holds that possibility and since I was born, I've had a lack of caution and sometimes foolish carelessness in dangerous situations. When I have dreams like this, it is very real for me, and my mind trudges through all the pertinent emotions, reactions, and feelings. So, when I awaken finally, I am EXHAUSTED. I have strolled towards death so many times in my dreams, and even though I am alive afterwards each time, I still endured all the profound and genuine psychological progression to impending death.

Anyway, I was in a plane that ran on a roller coaster track. The track looked much like the laser loop that used to be at Kennywood. The plane was stopped on one of the ends, where you're staring down at the ground and it was also open, like roller coaster cars. I'm not sure how, but we, the passengers, knew that once the plane started again, it would come off the track and nosedive to the ground. We were, literally, facing our deaths. And waiting. Waiting for motion that would end our lives, and yet stably situated in time and place. I woke up at that moment because my boyfriend got out of bed; I hate when dreams don't end, even ones where someone is dying. I have this inherent desire to know what happens, just like at the end of a fictional book or movie, regardless of the unimportance of a "fake" story.

aliciak @ 2007-05-02T16:03:00

2007-05-02T20:29:39Z

These past few weeks I lost a lot of the motivations that I precariously held on to in order to get through the day. I was somewhat excited about various writing projects, even if I didn't actively pursue them. I felt better about going out a little more. I had so many craft ideas in my head, many of which I wanted to submit to magazines or contests. Unfortunately, I go through periods where all of those things still exist, but the motivations are gone. I happen to be in one of those now.

My health isn't any worse than it was, but my spirit and heart are crushed for a variety of reasons. I've adopted the "what's the point?" attitude, and it is difficult to make myself do the most basic things, like eating and showering. Last week I had the momentary distraction of planning for and organizing a barbecue in the park, which went really well. But, I've had a lot of trouble with eating--I just can't do it--and it got me thinking about the disagreement between body and mind.

I know my body wants food, but when I feel depressed and such, I have less hunger pains. But even when I do have hunger pains, my mind still says no. I already have a complicated relationship with food because of my illness, but this time around, my aversion to it is more parallel to an aversion to life. All I want to do is sleep, or rather, be unconscious. I want to be woken up when my life, healthwise and lovewise, is better. I am so tired of crying, so tired of my eyes burning from too many tears. So tired.

Yesterday I took a long bath so that I could cry by myself instead of enduring more fake comfort. I can't decide if I feel lonelier if I'm the only one in the room or not. I sat in the tub and realized I had no reason to get out. There was nothing waiting for me, no conversation to be had, no place to go. Why would I rush out and quickly get dressed? I felt frozen and stagnant. So, I I just lay there, half falling asleep, half hoping my body would just continue to shrivel up like a raisin in the sun.

Something has to change soon, and maybe that should just be my perspective. I'd much rather it be something more miraculous than that, like truly loving myself again or making more strides in terms of my health. Nonetheless, something has to change.

Often, it's the little things

2007-04-26T20:24:07Z

I find that the littlest things affect me, mentally, especially recently. I was always like that, made "happy" for the rest of the day after finding a tulip on the ground, or made "sad" by having a bad dream about someone dying. I have a love/hate relationship with the way things affect me; obviously I am more partial to the happy things.

Yesterday, I went to the hospital to have blood taken (again), as that is part of my routine, being on immunosupressers. Because of my various (negative) memories in this hospital, I am careful about what I wear, what I take, what I do, when I'm there now. I associate certain pajamas, toothpaste, foods, cds, sounds with this hospital, and many of them are "ruined" because of this association. I took a NYT magazine with me, instead of a book, b/c the magazine will get thrown away, but I don't want to associate a book with it b/c that book might forever be tainted. I do not want to crochet anything there because I can't remember that "I crocheted that there" unless it is something I intend to sell, i.e., not possess. The times I've been to the hospital, I have ended up doing nothing while I wait in waiting rooms. Again, I am careful not to make memories. It's strange how the mind works...

I hadn't been there in a while, so I was concerned about how I would react. The ER was redone and relocated, so when I looked at the new one, I wasn't immediately bombarded by memories. I have no connection to this ER...yet. When I saw someone on a stretcher/wheely bed, I couldn't help but look, but then I looked away, only hearing the screams. I remember how much I hated being stared at when I was wheeled around, looking up at fluorescent lights, trying to distract myself from all the older faces whose looks said, "she's young, why is she here? why does she look like that?"

When I was getting registered, the admin guy in his cubicle was typing in some of my info that has changed, such as my insurance. He looked at my blood script from my doctor, and asked, "Any particular reason you're having blood taken?" I laugh in my head, wanting to deliver the words "For shits and giggles, primarily." This guy looks like the guy from Office Space who keeps looking for his stolen stapler. I had him the first time too. I would answer "For shits and giggles, primarily," and then follow with, "Well, actually, I have no trouble with the shits part, as I have too much of that, which is actually the problem. So I guess for just giggles? I dunno...I don't really laugh at getting my blood taken for the umpteenth time...."

Of course, I don't say that. I stumbled on my words, "Well, I have...it's for a chronic condition...well, I'm on immunosupp--" He says without looking at me, "What's the condition?" I sputter out ulcerative colitis and he grabs a thick book of medical conditions and their corresponding codes. Is this the moment my mind sunk? The moment that negated the words constantly spoken to me by my mother, "You are NOT your disease" ? Is this the moment the rest of my day was ruined, the reason I'm still in this funk? I can't always identify what "little thing" it is, but maybe it was watching this man, who doesn't know me at all except by a computer entry. Watching him type in a three digit code that meant ulcerative colitis. I am a three digit diagnosis code. I am an entry in a hospital database, lumped with lots of other patients who share the same diagnosis code. 542? 572? I can't remember.

My fixation on how I correspond to a number is nothing new. When I first took the PSAT, they give you this little sticker with a barcode that (I guess?) we afixed to various papers and forms. It was at least 9 or 10 digits long. I remember I saved one, tacked it on to the side of the bookcase next to my childhood bed. I looked at it every night before bed, along with other stickers and postcards, and thought, I am a number. I am nothing to the PSAT people, I am nothing but a barcode. Not a Merit Scholar, but a score that corresponded to a Merit Scholar score range that corresponded to a barcode that corresponded to me.

Good or bad, I have never come to terms with being reduced and represented by an arbitrary number. And I'm smart enough to realize that it means nothing, that it is a means to organization and it has no bearing on who I am, or what I do. I know most people don't think of me as a disease, or a barcode, but I do exist as those superficial representations and I don't like it. I don't like it that those representations are out there, not showing the whole picture.

I don't react, wince, or move anymore when I have my blood drawn. I almost don't feel it. Maybe that is my reaction to the superficiality and disinterest of many things medical. I only point out the little hole in my arm that never heals, "This is where they take it" so that the nurse doesn't bother searching for a good vein. My precious blood is taken, a part of me that is no longer a part of me. I don't watch it, not out of disgust or being grossed out by blood or needles, but because it is mine and it is taken. It is put in a tube, given a sticker, and put in a tray with lots of other blood tubes. They all belong to people, with personalities of complexity and brains full of memories and lives (hopefully) full of activity. But there they are, sitting in identical tubes and looking the same shade of red, about to be part of routine lab work. Perhaps it was that moment that affected me, more than the diagnosis code?

I guess if I weren't negatively affected by such stupid little things like the unimportant blood tubes or numerical codes, I would not be positively affected by finding a flower on the ground or holding a baby's hand or smelling molasses. I am crushed by the weight of such little things.

Mini meltdown

2007-04-24T01:43:40Z

I had a mini meltdown today, as I have had a couple of really great days and my life is as close to "normal" as it might ever get. I can't even remember what normal days really felt like, because I will never have days when I don't have colitis, don't have it looming over me 24/7. Nevertheless, I have been able to go out and have fun, to have a taste of what my old life was like, except without a job or jobs. And I love it. I still have tons of worries, and I have to be cautious about things, but these days are generally a lot better than past ones.

Why the meltdown? Because even when I feel like this, I am still not supporting myself. I am still not worrying about all the normal life things and expenses that most people, like Ian, are worrying about. I still have all these factors absent from my life, things I haven't had to deal with yet. And because I have had so many months of being sick, I haven't looked at job postings for a really long time. I have blocked out a lot of those torturing thoughts, and have tried to forget for the time being how much I loved teaching, being around children, interacting with so many people everyday. Now when I start to think of all of these things, I am scared. I am so scared that I don't know if I can ever have confidence in myself, my body, my mind again to do any of them. And having the disease I have, the limitations my body might always have, it would be false and foolish to have such confidence. With all the daily worries, medicines, pains, etc. that I have to still deal with, I don't know if I can ever throw myself into something so time-consuming, stress-producing, and schedule-heavy as teaching.

I'm still not in a position to get on the subway at 7:30, to say that I can definitely make it to class and all the way through to the end. I forget what it's like to interview, to go through training, to have to stick to a schedule. I cannot NOT tell employers about my situation, which means, any day, any minute, I could get terribly ill again, and will have to quit, or call in sick a lot. I am no longer a reliable person and there's not much I can do about that.

Even when I busy myself with Etsy, writing, and other little monetary and creative pursuits, I am so fully aware of the fact that I am not supporting myself at all. That I am not even close to making enough money to buy monthly food, let alone anything else. I am aware that my loans are deferred, that I am depending on Medicaid, that Ian is paying rent, our phone bill, and many other expenses that come up. I am dependent on everyone for everything and no one is dependent on me for anything. It's still difficult to come to terms with that everyday, and I DO think of these things every single day. I am grateful, and at the same time, embarrassed, sheepish, and ashamed. I feel like I am running really fast in a field of mud, always trying, but never getting anywhere. Slipping, falling, trying to pick myself back up again, only to encounter the same scenario.

My meltdown only lasted 5 minutes, but it was an intense 5 minutes where I looked at education positions at museums, gardens, parks, that two years ago I would have applied to in a second, and would have had a good chance of getting. Now, I look at the hours, or commute, or all the responsibilities, the exact times to be places, the reliability one must have, and I know. I know I can't do it anymore. But I don't know what else I can do, what I can offer right now to any employer. I keep getting stuck in the mud and I'm tired and beaten and discouraged.

aliciak @ 2007-04-18T17:47:00

2007-04-18T22:36:34Z

Usually when I'm feeling down, depressed, and desperate, I turn to some form of words, whether that be literature, music, or doing actual writing myself. I guess there are times when instrumental pieces, crocheting, or a bath ameliorates my mental state too. And talking through things is usually the first attempt of ridding myself of negative feelings and desires of destroying myself, or at the very least, destroying something. Why do people always fail at helping? Why is there usually nothing someone in your life can say to help you? Why are words so meaningless in so many difficult situations? Even though there is often futility in using words to attempt solving problems, I absolutely hate when dead silence is used. As if a problem will be resolved by NOT talking about it.

I don't think I've ever been ever to come out of a down and depressed state by merely ruminating on everything. It is so mind-numbing and daunting to feel silenced when the person you want to talk to the most feels the opposite. To feel like everything you say will be met with silence, but to say nothing causes implosions. What is the difference between exploding and imploding then? If my feelings and thoughts implode inside of me, they remain there, and fester and I feel increasingly worse. I did not anticipate that I could feel worse about something, than I have about being sick. That pain of the mind could be stronger than pain of the body. I have been proven wrong.

I'm purposely being evasive here, just as I always left out names when doing serious writing; it was always "he touched my arm on the subway as I passed out," or "he carried me through the central park sprinklers" or "we smoked pot and made out in the hallway." I like the anonymity of writing like that, the sometimes later guessing: who was that? when was that?

Today I downloaded a song that I have heard a few times on the radio. It is called Empty by Ray LaMontagne and is absolutely beautiful. In hindsight, it is perfectly fittting that I am attracted to a song entitled Empty right now. In a way, that describes exactly how I am feeling; I feel a profound absence inside of me, in the same way that silence can be heard and felt so much more than the loudest screams. I am a sucker for the violin, as is evident from this song. Especially when the violin seemingly comes out of nowhere and pierces your heart with melancholy.

"I never learned to count my blessings/I choose instead to dwell in my disasters."

Don't we all? I know I do. Every goddamned day. The former is so difficult, the latter so involuntary and easy.

"Will I always feel this way? So empty, so estranged?"

I hope not.

Legends of the Hidden Temple + Five Alive=perfection

2007-03-26T17:22:19Z

This weekend I stumbled upon perhaps the greatest Facebook Group ever: I HATE When Kids Suck At Putting Together the Shrine of the Silver Monkey. If you understand what this means, you rock. If you don't, hopefully you have channel 124 like me and can watch reruns of Legends of the Hidden Temple. The description of the group is hilarious, and if you're not on Facebook (what???), join it just to join this Group. Down with the Purple Parrots.

A day later, Ian discovers channel 124 (who knew?!?) and lo and behold, Legends of the Hidden Temple is on. The weekend just kept getting better. (Except for the fact that I cut my finger badly on Friday, and then yesterday I slammed a chair against my desk with my fingers in between and screamed blood murder; shortly after that I accidentally grabbed a glass dish that I just took out of the oven with my bare hand and now have some burns and blisters) We laughed and laughed and I wished we had some Zima right then to stumble down memory lane with. Somehow we started talking about the drink Five Alive, which I never had as a kid. Maybe that was one of those foods like spray cheese that my parents forbade, even though we ate a ton of crap like oatmeal cream pies and kool-aid rainbow punch (rest in peace, you were the best flavor) all the time. Ian loved Five Alive, which is a blending of lime, lemon, orange, tangerine, and grapefruit juices, but when he looked it up on wikipedia, it appeared to be hard to find. Hmph.

Later, we made a trek to get some drug store stuff and vodka and Five Alive. After coming up empty, we were a bit saddened. We got home, and I realized I needed butter. Ian went down the street to Met, where that guy mentally rapes me all the time, and what did they have there in the slummny grocery store? Five Alive!!!!!! Our dinner plan was: Vodka + Five Alive + Legends of the Hidden Temple. Notice that no mention of food is made there. It would be hard to conquer our Chili's look alike salad dinner of last weekend that I wrote about on http://aliciakachmar.com/blog but we would try. Five Alive is tasty stuff.

GUTS was a stupid show now that I watch it with a 25 year old mentality. I like "aggro crag" but the rest of the show is lame. I don't remember Figure It Out, and it all went downhill come DoubleDare 2000. Anyway, long live Five Alive and Olmec.

It's all relative

2007-03-15T16:37:09Z

I have learned that physical pain is not always a pejorative feeling. It is not always bad in my book, as it used to be. Last weekend, I biked for the first time in months. Obviously the weather during winter has a lot to do with not biking, but my health interferes as well. All I really needed to do that day was buy lemongrass from a particular grocery store in Park Slope, to which I would bike. Instead, I did the bike loop in Prospect Park. It was one of those days when the temperature was supposed to reach the fifties, but it never did. Nonetheless, everyone still pretends that it is spring. The outside tables come out, albeit with wintercoat-wearing patrons. Prospect Park was packed, even though with windchill it was probably in the low forties.

My legs ached within minutes, my lungs sucked in all the air they could. I look around at all the people and think of myself asking them, "Do you know how almost miraculous this is for me to be here? How difficult it was to get to this point, physically and mentally?" Of course I don't ask, and they don't know, and I guess there could be many of them wondering the same things about themselves. I didn't dress appropriately for the weather, but I never do because I get hot so easily. The wind against my ears, which doubled because of the speed of my biking, gave me temporary earaches. When I hit the downhill spot, where you go past the beautiful pond, tears streamed down my face because of the cold air. It was a relevant reaction anyway, as that's my favorite part of the ride and I have missed it so much.. There were thousands of sea gulls on the water, dotting the pond with white as I went by. I started to notice particular trees, still without any leaves, that I remember during my fall bike rides. I looked at one and thought to myself, you're the one that will turn orange first; you're the one that will turn red when all the other trees are naked. Those leaves made me want to live again last year.

The lemongrass wasn't at the grocery store, but I laughed at the same "lemon glass" sign anyway. And I like looking at the homemade tofu soaking in water, the plentiful sprouts and lettuces. I found the lemongrass at a store 2 blocks from my house, which would have required a short walk and not a long diversion via bike. I didn't care. This was not wasted time or sweat or pain. It was all perfect. I was cooking, happily and excitedly, again. My mouth was still puckering at every food I put in it, after a week or two of barely eating. My gourmet vinegar-drenched olives sent spasms through my cheeks and tongue, but in another week, my mouth would be used to taking in food again.

That bike ride broke my already-broken body. My unsuspecting muscles torn, my nose running uncontrollably. Everything hurt, and yet, it was still good. As I got off my bike and walked it during the uphill part, watching a little kid bike on by me, I revelled in this pain. My weakened immune system will not bounce back easily from common aches like this, but I don't care. This is the pain not from sitting around in my house, but from getting outside. This is not intestinal pain that paralyzes me, but muscle pain that tells me to do this more regularly. This is pain from living, not merely pain from being alive. There is such a difference. I want to feel this today, tomorrow, the next day. I want it to hurt when I sit a certain way, I want bruises from hitting my shins on the bike pedals, I want cuts from carrying my bike down the stairs. I want to die because of the pains associated with my illness, but I want to live because of these kinds.

CRAFT

2007-03-09T22:54:54Z

Well, I did some shameless self-promotion the other day: suggesting the link to my site http://aliciakachmar.com/blog to CRAFT, which is an awesome magazine that we subscribe to. They also have a blog that is updated 10 or so times a day with rockin crafts projects, mostly from people's blogs and websites, and also craft contests, events, etc. Anyway, I suggested my Pac-man post in particular, and today it went up on the CRAFT blog! http://www.craftzine.com/blog/archive/2007/03/pacman_ipod_cozy.html

With that and writing for gridskipper, and starting to submit my writing to other publications, I'm starting to feel like I'm actually doing something! I mean, I guess I knew I wasn't just sitting around being sick all the time, even though there are days like that. My mom reminded me of that in a phone conversation last night, to look at all I've done in the past year. I guess it IS good to do that every so often.

Other good news: I am officially living off the system! I got approved for Medicaid today, full benefits. Next on my list is to join the two things that seem to dominate my days--colon/colitis and crafts--by means of a crocheted colon. I want it to be realistic, but not as realistic as my colon pictures. Just a soft little thing I can practice voodoo on every once and a while.

Sights and Sounds

2007-03-01T18:25:01Z

I recently started writing a story called Sense, which pertains to my hospital time and how my senses are bombarded with so many stimuli. It also refers to my lifelong lack of sense, especially regarding issues of health. In my housebound days of recent, I realized that my sensitivity to stimulus is always present. I have always been affected profoundly by sights, sounds, smells, touch.

Over a week ago, I didn't leave the house, at all, from Saturday until Wednesday because of severe disease activity. Do I get cabin fever? The real question is, does it matter? I don't have a choice sometimes. After starting on rectal suppositories (music to your ears, yes?), I started to feel significantly better. They sound a lot worse than they are, or maybe I'm just used to things going in and out of my ass by now, and that's definitely NOT referring to anything of the sexual kind. Anyway, Wednesday I decided to walk the two blocks to the UPS store, where I can send my Etsy items by regular mail without any lines or stupid people.

Walking out the door after being bound to my bathroom is monumental. At my worst, I fear doing the laundry one flight down, b/c if I have an urge, I won't make it to the bathroom. The outside world did its usual bombarding; it was sunny out and the snow was melting. I feel literally attacked by sights and sounds when I exit the house. I step in puddles because I forgot what a puddle is. I forget my sunglasses because I haven't had to deal with glares. I trip on uneven sidewalks because I am used to level surfaces. My skin burns from the wind because I am unaccustomed to the effects of weather.

I am amazed and confused and scared at all the people, at how they talk to each other and go about their usual business. I don't fit. A block away, someone asks me directions to a particular intersection. I don't hesitate; I know exactly where it is. Minutes after I leave UPS I see a UPS truck, and it is my usual UPS guy, who has talked to me when I receive packages for Ian. He waves to me, and I am thrown off because of this meeting "out here." I am only used to hearing the birds from inside, predicting if that is the sound of a UPS or FedEx truck, watching my geranium bloom with such fervor.

I feel that I am without a community. I don't mean without friends, and I know that I am active virtually, blogging, writing, crafting. But those aren't communities, at least in my mind. I used to have workplaces that were so much more than that. They were communities of like-minded people, places to teach and learn, places to belong. I had so many of them, but I don't have any now. A week or two ago, Ian asked me for suggestions for the Gawker sites/blogs and I thought of some, since I am not only a writer but a commenter on posts. He relayed these suggestions at a meeting that day, but never said they were from me. He claims he wasn't passing them off as his own, but when you suggest something, and don't reference where it comes from, you are implying it is your own. That angered me so much, because I am constantly feeling community-less, so to suggest something that everyone received positively at his work would have made me feel like I contributed. I didn't even want to look at him. It wasn't about credit, it was about acknowledgment. They are different, and I received neither.

Just today I gave jelly thumbprints I made last night to Ian because he was attending something called "Jelly", a semi-regular gathering of people, mostly guys, who work on projects, computer stuff, etc. at the Jelly creator, Amit's house. I had responded earlier to Amit that I couldn't make it, but would send a jelly dessert along. It turns out that there was no internet there, so after a while, the group moved to the New York Public Library. I find out that Ian never even took out the cookies. Again, I became so mad, told him so, and cried for twenty minutes. I know he'll read this, and I know he just doesn't get it, but me making those cookies was the same as making that suggestion earlier. I am not part of something, but I want to be so badly. Those are my only makeshift ways of being part of a community right now, and it saddens me that the person I love and live with doesn't understand that. And yeah, it's just a stupid suggestion and stupid cookies, but they meant something to me.

New blog

2007-02-27T01:53:46Z

I can now be found here: http://aliciakachmar.com/blog This will be a blog more about my creative pursuits: crafting, photography, writing, cooking/baking, etc.

I will still continue to post here though, the more personal stuff and nitty gritty. Perhaps you can subscribe to my feed, or at least look at the site once and a while. Ian did most of it, but I'm starting to learn some html (just trying to sound cool there) so that I can fly on my own.

Music to your ears?

2007-02-21T23:26:18Z

Well, things went from bad to worse, just like they always do. I knew I was gradually "flaring" or relapsing; I've felt it for a month now, that every week is a bit worse than the last. I wasn't being negative or pessimistic, I was merely feeling the truth. I've become somewhat in tune with my body, not enough as it won't listen to me when I say STOP!!!!, but I know when I'm going downhill. I know the difference by now between a bad day and an actual flare-up. In some ways, I'm glad it finally became a full-blown flare, b/c I'm sick of people thinking that all of this is in my head, that me getting stressed makes me sick, etc. Having a disease makes me sick. I'm not saying having bad thoughts is a good thing, but those alone don't make me visit the bathroom 20 times/day, or have a lot of pain, etc.

I don't want to bore you, or myself, with an all-colitis post though. Valentine's Day was interesting. As many of you know I'm in one of those long-term relationship deals and I live with my boyfriend, so I know I'll be spending V-Day with him. Like some people on this day, I cried, but not for singlehood reasons. Just general unhappiness about the above--pain, suffering, shitting--the usual, but it wasn't all bad. I had made a rule that we wouldn't really celebrate that day (we don't really care for the holiday anyway) b/c I couldn't go anywhere if I wanted. Poopers like me don't go to crowded V-day dinners. My other rule was $5 or less on a gift, as we don't have a lot of $$$$$ due to me. I had made Ian a collage card and bought a $4 Fair Trade organic milk chocolate bar with hazelnuts. Ian got some crazy deal on flowers, probably b/c they were only delivered at 9 or 10pm: dozen red roses surrounding a white hydrangea in a shorter squarish vase with rocks in the bottom. Gorgeous. (Actually, I think he went over the $5 rule).

What is the deal with people bragging about dumpster-diving? Finding an abandoned chair on the street is not dumpster-diving. Picking hangers out of a garbage can is not dumpster-diving. I mean, have you literally dumpster-dived? I mean plunging yourself into the vileness of a dumpster, plucking out a treasure, and managing to get out again? I only get peeved about this because I am a seasoned pro, a veteran, at dumpster-diving. My aunt Adele dumpster-dives a lot, looking for treasures, bubble wrap, good boxes
b/c she has an ebay business, dealing mostly with estate sale items and antiques. She taught me how to dumpster dive once upon a time. I actually left my own college graduation party to go stand in a filthy dumpster, in my pink peasant shirt nonetheless. I think we got some greeting cards of the happy birthday nephew variety and maybe some other little stuff. But that would be first of many experiences. Later, we would get chased by mall security in their minuscule vehicles. My aunt sure knows how to combine a plethora of expletives and tearing away in a mini-van. Shit, those were good times.

A few weeks ago, I found myself in the grocery store a block away, the one where the guy mentally rapes me every time. I usually try to be in and out as fast as possible, esp. if I don't feel well. I'm nearing the end of the grocery list, and what comes on the radio? Close your eyes, give me your hand, darling. No, please, no. Do you feel my heart beating? Do you understand? But yes, it is Eternal Flame. I say "no" not out of hate, but out of inability to resist singing the song aloud all the way through. Bangles, don't do this to me, I really want to get home before I shit myself or get raped! Why????? "Say my name! Sun shines through the rain!" So, there I am, aimlessly walking up and down the aisles, choosing the ones not populated with customers, belting my little heart out. Finally it's over, but the damage is done: I will be singing that song for at least the next two days. Little did I know that Ian would download it, get even more addicted to it than me, and many a karaoke session would occur.

I've always had an OCD reacton to music. I hear a song, fall in love, and play it incessantly. It's like exorcising a demon, but a demon I really love, just in an unhealthy way. Badly Drawn Boy cd lasted about a month, Karma Police about three. Just today, it was CCR's I Put a Spell on You. I do like Nina Simone's version, much like everyone else, but I find myself really strumming my air guitar when CCR's version comes on. Well, that's no different though; I really love CCR and they frequently resuscitate my air guitar . The CCR version has this long instrumental part in the middle and then they come back full force. Brenna once pointed out to me that I love all songs with long instrumental sections. I started listening to all of my favorite songs, and alas, it was true. I never really analyzed this, but I really like "waiting" for the words. It's the anticipation, like the singer was holding their breath the whole time and now they've really got something to tell you. I decided to look up who wrote I Put a Spell on You, b/c I was pretty sure it wasn't Nina Simone. Screamin' Jay Hawkins is his name and Wikipedia says:

"The song starts out with the big-voiced Hawkins singing a ballad to a lost love. Very quickly, however, the performance becomes something unique: Hawkins seems positively demented as he sings, he threatens wildly, screams, grunts and groans, and sounds utterly demonical in reclaiming the lady as his own."

Hawkins was a blues singer and intended for it to be a blues ballad. But, when his producer, "brought in ribs and chicken and got everybody drunk, and we came out with this weird version. I don't even remember making the record. Before, I was just a normal blues singer. I was just Jay Hawkins. It all sort of just fell in place. I found out I could do more destroying a song and screaming it to death."

Ribs and alcohol do crazy things to me too. The rest of the wikipedia page is interesting, so here: http://en.wikipedia.org/wiki/I_Put_a_Spell_on_You Think I'll go scream Eternal Flame to death.

And the beat goes on...

2007-02-16T03:52:27Z

I've been feeling more colitis sick lately (wow, is this the 3829329th time I've thought/written/typed that?). As if I already don't have intense fears about everything as it is b/c of colitis. As always, when my physical state worsens, so does my mental. Last weekend, my goal was to not cry at all. I had spent the past two weekends crying a lot, like many hours. I actually succeeded at this. Even though I felt crappier (man those puns NEVER get old, do they?), I held back the tears that arose once or twice (not exactly healthy either) and did a few productive things.

Today, I went to the doctor, also for the 3829329th time I think. But, everyone goes every two weeks. Riiiight. My doctor still thinks I'm "ok" right now, that I should keep doing what I'm doing. I was expecting a Prednisone prescription, a Colonoscopy appointment, or what happened, which was nothing really changes at all. No, I'm not that bad, I realize that, but I don't feel well either. The only difference is that my meds are upped a little, which would have happened regardless b/c my bone marrow, blood cells, etc. haven't received negative effects from my new drug, azathioprine. I wish I could get used to feeling shitty a lot, and not care about shitting myself and cleaning up the mess, and continuing on merrily, but I just can't. Could you? Another thing that made me happy and also peeved was that, I asked my doctor hypothetically, "Ok, so if I call you in a week to say I'm bleeding and going to the bathroom 30/day again, what then?" We do predinsone again, try again with a higher dose of new drug. If that doesn't work, then some of the more experimental drugs. I had thought I was closer to surgery, i.e., ripping my colon out and making my small intestine into a pooping mechanism, but no. I should be happy with this, this possibility of something "working," but it only means more trying drugs that aren't guaranteed to work. It's depressing, a letdown up to this point, and exhausting.

My 13-yr old cousin became diabetic recently, and it was such a blow. Unfortunately, diabetes runs in our family. My aunt (my cousin's mom), my deceased grandfather, my mom. Not the obesity or poor lifestyle kind, the type that is soooo managable if people didn't feed their kids crappy fast food all the time (I'm generalizing). When she started urinating a lot (one of the first signs), her mom wanted to test her blood, and she said, "If I'm diabetic, I want to kill myself." Her mom hasn't dealt with it all that well sometimes, and having watched my mom almost die from it in the beginning, and struggle with it at times, I would have the same response. I did, and do, have the same response to this disease I have. I can't imagine being 13-yrs old and getting dealt such a blow. She's worried about people not liking her anymore, that she sort of has "cooties," etc. It's times like these that I become more humbled about my own condition, because it drives home the fact that I am not the only sick person out there. It's hard to remember other sick people though when you are sick yourself. It's hard to care about other people's pain when you are in pain yourself all day.

When my mom told me about her, she gave me her hospital number. I hesitated about calling, b/c honestly there's nothing you can say. She's devastated, just as I was. She wants to die, so did/do I. I promised myself I wouldn't ask "how are you?", but I did. It's so natural, but sometimes I find it insulting, especially when the real answer is obvious, but customarily, we say the opposite. "Fine, I'm fine." I hate that question, and I hate even more the answer I have to deliver. A few days later, I crocheted her a little stuffed heart and wrote her a note to mail along with it. In dealing with tough situations, I've stopped (I don't think I ever did this though) spewing out meaningless words like "It'll all be ok", "You're gonna be ok," and "Cheer up." Again, insulting. Being positive is one thing, being stupidly cheerful is another. I wrote her a note basically saying, "I don't know if you know I got sick a few years ago with something different. It is such a blow. Just know that it's ok to cry and be upset, but also remember that so many people love you so much, and they always will, and they're gonna help you as much as they can. I try to remember this too." I sewed a little heart for my mom when she first got sick and could barely move, eat, etc. and I brought it to her hospital bed. When she came home, she put it on her nightstand, and said that sometimes that heart was what kept her going. It meant us kids, her life, everything. She'd hold onto it, and it still sits there today. At a family birthday party a few days after my cousin got out of the hospital, my mom told me she showed everyone the heart, loved it, and carried it with her diabetes stuff.

I wasn't even planning on writing about her, but perhaps that is a positive occurrence, as I moved on to someone else's life, instead of wallowing away in mine. Even though I feel this slight sense of happiness, at her reaction to my note and heart, when it comes down to it, nothing really helps in the end. Not all the love in the world will make you want to keep going if you're in enough pain, if you feel so defeated, depleted. I've learned that all too well in the past year, that although I am surrounded by loving people, a loving boyfriend, and a fading memory of the life I loved, lost, and crave, it's not enough. I can think about being in love with Ian and downing a bottle of pills with gin all in the same minute. I can think of all the children I babysat, taught, watched, held, loved, and the children I have yet to bare, and jumping in front of a bus comes to mind shortly thereafter. It's sick and yet painfully real. So, I think about my cousin, myself, my mom, and so many other people and ponder what the "right" outlook is, what spin should be put on mind-blowing diagnoses, and I can't come up with anything sufficient. Do we go on b/c we know it'll turn out well? That's naive. Do we forge ahead b/c we have faith in some higher power, or modern medicine? That's not a guarantee either. Do we keep living b/c we have to? No, we never "have to." Instead, just as there's always a chance of getting this or that illness in the midst of a good life, the same goes with happiness, satisfaction, fulfillment. There's always a chance of getting that too, in the midst of difficulty.

Good titles, anyone?

2007-02-08T18:25:44Z

I think if I ever move from livejournal to blog (what's the difference, again?) and move here http://aliciakachmar.com that I'll need a better title and more "features." Back in the day, most of the entries were adventures that hovered between hilarious and stupid. So, a good title could have been "Adventures in Hilarious and Stupid Land" perhaps. (pretty lame actually) But since life has changed a lot for me, this lj is usually filled with illness rants and difficulties, followed by some forced paragraphs about fun/good things that happened. So, I think that each entry should be split into "good" and "bad" like it already is most of the time. But, "good" and "bad" are boring, so I'm taking suggestions. Maybe "disease" and not-disease" would be a little too grim. Ditto on "housebound" and "not housebound", and the latter would be pretty lacking. There could also be a bathroom story of the day feature called "Maybe I shouldn't have eaten that" or "Wow, these drugs really aren't working are they?" I could also include a daily feature that would calculate how many minutes it takes from the time I wake up till the time I first feel pain, usually intestinally or migraine-wise. This number would never exceed 10 minutes, so it would be a quick add-on! Another fun number feature would be how many times I've had my blood taken, how many unpaid medical bills, how many pills I take per day, how many doctor appts I have, how many days straight I've stayed inside, and how many days since I last was a teacher. That could be a clicker sort of thing that Ian could probably write the code for; it would go up by 1 each day, unless we're no longer in base 10 world, but rather # of tears in 24-hr world, in which case, it would increase by approximately 17-232. I'm ballparking it there.

Ah, being cynical and hopeless is fun. Oh wow, the ideas keep coming. "Rant of the week" would be when I complain about how somebody I know (or don't) is complaining about a really minuscule problem, and about how I probably used to do the same thing.

Anyway, that way, you could skip whichever topic you don't enjoy reading. For instance, if you're cynical and like depressing things, the "bad" heading is your best bet. If you're always looking for the happy and funny parts of the blog, then scroll down to "good." Sometimes I might switch the headings so that you don't know what you're getting into! Like, really ambiguous titles like "Brussel Sprouts" and "Swiss Chard." "Fingernails on a Chalkboard" and "Chewing on Marbles and Forks." Wow, it's fun to think of these.

It's also fun to start fires. Well, not really, but it keeps things exciting. I mean, things were already exciting enough yesterday because Ian got to apply for Medicaid for me, meaning, healthcare for yours truly. Oh, two more title possibilities, "Paying $400/month for insurance that only covers ER and drugs" and "Living off the system and considering applying for foodstamps and disability." God I'm good! Yeah, so that was pretty cool, especially when Ian guestimated that I had $2,000 in savings. Um, hello???? You live with me, correct? Do I buy anything anymore, other than groceries, prescriptions, adult diapers, or medically-related expenses? Yeah, I definitely have a mere $300 to my name. Most of which was from my parents.

Anyway, I started a fire, but not on purpose like you're probably assuming from the tone of this entry thus far. I was sewing these cute little hand warmers (look like beanbags) that I found in a Martha Stewart mag. I followed instructions perfectly, except that when I microwaved them, I placed them on a paper towel b/c of the greasy/yucky microwave plate. Poof, fire! I sent Ian to fetch it because I was working on another one, and I wanted him to time how long they stay warm. (Well, if they start fires, probably for a pretty long time then). He says from the kitchen, "It's on fire!" I reply, "Haha, no it's not" and he says, "No really, it's on fire." I reply, "Yeah, right" but walk towards the kitchen anyway. Yep, that's a fire. Ian being the big strong 118lb man he is, he fiercely grabbed the fire extinguisher and dove into the conflagration, smothering the flames that threatened our very lives. Whoops, slipped into bad novel-writing mode. So, he put out the little microwave fire and I wanted to cry. Not because I could have burned the apartment down, with us inside, but because it was the cutest embroidered hand warmer! You should have seen it! Oddly enough, after the smoke fumes diminished, we inspected the poor casualty and found that the part of the paper towel under the warmer was in tact. The top of the hand warmer was the most charred. WAS it the paper towel? Or was the hand warmer possessed? Was Martha Stewart trying to kill me? Or was some higher power finally putting me out of my misery? You be the judge.

aliciak @ 2007-01-24T14:03:00

2007-01-24T19:03:46Z

Wow, that's two posts, albeit short ones, in a row that didn't involve my tales of having a chronic illness. Unheard of! I must put a stop to that here and now.

I've been doing ok lately...a few scares here and there, always not the the greatest mornings, and the same amount of depressing thoughts. I'm not a big fan of this new drug, mostly because it's doing a half-assed (ha, pun?) job: surely I'm better on it than not on it at all, but I am nowhere near normal or even "good." I still avoid going out a lot, I had a major freakout on the subway the other day b/c I hadn't been on it in a month, and I'm still so far from being able to have a job and keep it. And now that I'm not on the ever-powerful steroids I notice a lot of little things that probably went away temporarily. I have constant joint pain, sore muscles and bruises stay the same for a long time, and I can get insanely fatigued. I've had so many horrible migraines this month, with that blinding aura, so if I didn't feel house or bed bound because of colitis, I have that in addition.

I've tried to distract myself from the habitual holding my big bottle of advil and gently running the kitchen knife back and forth across my wrists. So, like anyone who drank heavily, had suicidal thoughts, got dealt a huge health blow, I've turned to writing. Then again, I've always written, and over the past 5 or so years, I've done lots of good writing, in my opinion, most of which no one has ever seen. Some funny, some sad, some prompting the question, "Oh shit, did I really do that?" It's strange, and yet somewhat satisfying to think of various people reading some of it and probably concluding that they didn't know the real me, or something to that effect. I guess everyone has their hidden sides, sometimes even hidden from themselves.

I've really been trying to finish a lot of the started writing "projects" I have. "Projects" is really the wrong word though, since usually I'm inclined to write (record) something on paper, I stop out of laziness or apathy, and that's that. It has always been a natual impulse of mine to write something, but not to complete or finish it in any way. Which would explain why most of the "finished" writing was done at work, or in between jobs, on the subway. The half-finished pieces are the ones I started at home, at my desk, or on the computer, my least favorite writing surface. Those are ones I have forgotten the endings for, where I stop writing mid-sentence, as if the phone rang or the oven timer went off at that exact second, and again, that's that.

An exception to the above is my Peaches story, which I sort of finished. It's about the day my doctor called me at work and told me my blood levels were hovering around transfusion level and I had to check into the hospital. The title comes from the fact that I was so weak that I couldn't hold my bag of peaches, but there's a lot more meaning that I only now really figured out. I had recorded a lot of that story in various places, and I finally crafted it into a chronological tale. In addition, I've started to work on "Six Day Hospital Stay." Has a nice ring, doesn't it? "Peaches" will probably be inserted in there somewhere. "Six Day Hospital Stay" also exists in many places, and I've been working on transcribing my hospital journal. Is it in French, you ask? Nope, but some of my sentences and words are so scribbled or misspelled for many reasons: minimal brain function b/c of minimal blood to the brain, IV in hand and then getting blood taken many times a day to the point that I started writing with my left hand a little, and then eventually stopped writing completely b/c both hands were so bruised. Sadly, who knows what else I would have written and recorded if it hadn't been so painful. I have a couple places I'd like to submit the story if/when I finish it, but it's more of a cathartic process in some ways.

Lastly, a quote I wrote down in high school that I always liked, and now more than ever, really means something to me:

Let them think what they liked,
but I didn't mean to drown myself.
I meant to swim till I sank--
but that's not the same thing.
-Joseph Conrad

Are you on Facebook?

2007-01-18T17:09:22Z

If so, make me your friend. Ian is beating me by like ten friends. The competition is on!

toothbrush, anyone?

2007-01-16T03:52:42Z

I'm selling a gently-used (only 5 times!) Oral-B Cross Action Electric Toothbrush from Duane Reade for $5.99. Retails for $7.99, so you're clearly getting an excellent deal here. It claims to have some kind of whitening power. It also has the WORST SOUND EVER. It's like being at the dentist's EVERY SINGLE DAY. I knew I should have kept Ian on a tighter leash, or accompanied him to Duane Reade when he was instructed to purchase two things, only one of which he actually got. In addition, he purchased this god-awful toothbrush. As soon as he came home, he shows me his new "toy," and I immediately explained that said "toy" would be very loud and he should return it right away. I don't like to feel like I'm at the dentist's every day, but my concern was more for Ian. He HATES loud sounds. Actually, he hates all sounds! He can hear dogs barking, firetrucks, etc. when I can't hear anything at all. And I don't have bad hearing! He's incredibly sensitive to all noises, so much so, that on our very quiet street and the white noise of the fan, he sleeps with the blanket over his ear, or a second pillow over his ear. Pillow talk is really fun, let me tell you. Anyway, let me know if you're interested. Better yet, I'll pay YOU $5.99 to take this toothbrush out of our hands, and out of our eardrums!

(Just kidding of course...sort of)

post-2006 wrap-up

2007-01-06T23:11:42Z

There's so much to say and write, and yet, nothing at all really. I guess I continue to "get better", whatever that may mean, but life still feels very uncertain and somewhat depressing. I keep asking myself, Is this as good as it gets? Is this as "better" as I'll ever get? Is this really my life? I actually had a good Christmas, something I sort of didn't expect. I flew to Pittsburgh and enjoyed Christmas Eve this year. Every time I did something or went somewhere in Pittsburgh, I was reminded of the same experiences last year. I stayed in bed crying almost all of Christmas vacation last year. I'm not exaggerating. My body was deteriorating, as was my mind. At Mass on Xmas eve, in between going to both Grandmas' houses, I remembered that last Xmas (I think it was Xmas and not Thanksgiving), I don't think I walked up to receive Communion because I predicted I wouldn't be able to stand up that long (maybe ten minutes?) because of severe anemia. Someone brought it to me that year, which made me feel so self-conscious because everyone then knows that "she's sick." That thought brought tears to my eyes, though I held them in there.

I got to play with my cousins, as well as my two cousins' children, talk to people, eat, take pictures. Sure I felt crappy some days and didn't feel like going anywhere but the actual holidays were good. I had a breakdown one day before one of the craziest ideas I've had post-colitis: drive 6+ hours to VA to see Ian and his family. Why is that crazy? Well, as someone who is scared at every train ride, car ride, etc. and can only endure these if they're less than 10 minutes b/c I start thinking the worse, a long drive is almost unthinkable. Almost. This trip was very important to me, as I wasn't able to fit it in over Thanksgiving, and wasn't well enough that time or most of this past year. I've wanted to see Ian's family again, especially his Gram, who is very sick and happens to, well, really like me. Yeah, so I broke down, cried a lot, called Ian, and freaked out because if something bad happened colitis-wise, I would probably call it quits by driving into a tree.

Nothing of the sort happened, and though I pondered backing out at the last minute, my parents encouraged me to at least try. So, I popped some imodium and told myself to fucking drive already. After 7 hours, and count em', ONE stop, I made it to Ian's brother's place outside of Richmond, VA. I hadn't seen him for a week, though of course it felt like a year, so our reuniting in the parking lot was quite romantic. Had a nice family dinner the next day and received way more Xmas presents than I deserved. I was greeted with "There's my girl!" from Ian's Gram, which I'll never forget. Ian used his Steelers beer cozy that I knitted for him for Xmas, and also showed everyone the knitted penguin I made over 3 or 4 days in Pgh. I think they all like me. :)

The next day we went to the mall nearby, the sole purpose being to make fun of everyone there and pretend that we absolutely LOVE the mall. (We hate the mall, but are strangely drawn to it) I like to call Ian when I'm at the mall by myself and tell him how lame it is to be at the mall without my boyfriend, in my best mall voice. So, after making fun of enough people, taking a trip down memory lane via Spencer's, at the sight of which I screamed "Spencer's!", it was almost time to go. We contemplated piercings at Piercing Pagoda, but ohmygod what happened to the free piercing with earrings purchase deal? After seeing the bluegrass band at the food court, it was DEFINITELY time to go. Went home, felt somewhat shitty, had breakdown #2 of the Xmas break. Clearly sesame seed buns are not a good idea; the sight of blood brought back a lot of bad memories. Later that night we went to a botanical garden for their holiday lights display. Very cool.

The two of us made the drive back to Pittsburgh on New Years' Eve. And like all New Years' in Pittsburgh, our celebration consisted of banging on pots and pans on the front porch at the stroke of midnight. Ian hid in disgrace. We visited Ian's friend Brian and his wife Erin, and their month old baby Benjamin. Lots of baby holding! We went to Phipps Conservatory the next day with them (double date!) minus the baby. Also visited Ceil, Alan, and Helena (ceramics/summer trips). I haven't seen them in a year and a half, and she has wanted to meet Ian for a while. We also met up with Joy, who I hadn't seen in two years. Good ole Shadyside Starbucks. Brenna came later.

Now we're back in New York and I wonder what this new year will bring. I've only recently started to feel "tiredness" again, after coming off of steroids again (three month run?). Sleeping through the night is somethin' else! I've had a rough time, mentally, since getting back a few days ago. I moreorless cried in bed for a day and a half. Christmas vacation (2 weeks long) tricked me into thinking that returning to New York meant returning to work or something. But now I'm here, and I'm still not doing anything, still sick, still mentally unstable. I look at my day calendar and there's nothing on it. I have no plans, no schedule, only looming bloodwork and a doctor's appt. That's it. I put myself into such a funk and I could NOT get out of bed. When I did, I started to grate my fingers on the cheese grater, which Ian stopped me from doing. I tried to articulate what I'm feeling right now to Ian earlier, and said something like, I feel like I'm on life support, like I'm being kept alive just for the sake of being kept alive. There's no point to my life right now and all I'm really doing is sucking away monetary funds. I think it's been hard to hear about people's plans, and new years' resolutions, when all I feel like I'm doing is trying to stay alive. Even when I have this ok state of health, my mind is very unhealthy. I think everything got summed up nicely when Ian said "No one has given up on you" and I responded "I have."