The Vote

I have to take a moment off my usual musings to say, Wow, doesn't those closeups of the people in Iraq voting and the wide span ones of them going to vote amazing?! Doesn't matter what political side you're on, or if you're a straddler on the issues, the truth of the power of choice surely must be recognized here. Now I bet many people are saying right now that the media elicited and culled the pictures we have seen. Duh? No kidding. And others might say without Bush this never would have happened and still might not unless we hang in there. Duh, so what? That is not the issue I am addressing here so you all keep those thoughts separate for a minute and just appreciate this moment in time. I am saying that many people do not value the power of the vote, maybe because no one they have ever voted for has won. But that's irrelevant too. That we can vote, we can register our choice without getting shot or imprisoned is special. It is a right too few enjoy. Look at the pictures.Those are women, folks. Those are women who couldn't even go to school or speak to others about their private thoughts and beliefs without physical retaliation. They are voting now. How miraculous is that?!!! So I take a moment to pause in my life and say way to go, people. This truly is a special moment in time. Savor it.

Words

words
so necessary
seeped in pitfalls
emotional and cultural and ethnic and national and...and...and all
buttons when pushed completely change any intended meaning
into something else
a love affair with words can turn
at any given moment into
a battle royale
I am outspoken and often fall
when I mean to run
I have scars to prove it
so is it any wonder that in the city
I've learned to keep a rein on my outspokenness
and release my grip only in the workplace and at home
the workplace because I haven't the energy or patience
to keep still anymore or tiptoe around the usual
pitfalls and at home because my cats
or any two-legged creature who might venture in
will just have to take me as I am
but outside in the city or elsewhere I tend
to be cautious because words can cut deep
and cause damage too easily plus
it could also get me killed which
I have no interest in whatsoever.

Words
so necessary
disappear or hide
and often simply run away and I can see them
making their escape but my speech apparatus can't
seem to catch up to them and pull them into my mouth
but I'm an Indian
not a cowboy and I have MS and
this is one of the reoccuring symptoms and the one
I hate the most and find embarrassing but now
with chemotherapy this symptom has been relinguished as
the plot thickens and the words no longer run but simply
disappear or hide from me in the haze of the side
effects of the drugs administered to chase away the 'bad guys" and
are also indiscriminate when it comes to also killing off the
"good guys" does this sound familiar?
cops and robbers cowboys and Indians
the truth is
it is all one hell of a game that the affected nerve centers play
with the rest of the brain in the name of healing
and there are just no words
to describe it.

What is the Reality of Space

I've been thinking a lot lately about the reality of space--as in the empty area around oneself. In the country, it is vast in many ways. It may be filled with trees and mountains, but there's elbow room to roam and breathe. In the city, at least in my experience, the reality of space changes radically. For me, even now, my living space is defined in square feet--width times length = area. At first, I lived in 5'x 8'--room for a cot sized bed and a built in desk and bookcase. I shared that with an indefinite number of roaches. When I couldn't get rid of them, I named them.

Then I moved up in the world--to a space 8' x 16'. That was special. I could now have standing bookcases, a chair, a table, and a sofa couch. The next big move was to the space I inhabit now---16' x l6', a little peace of heaven since I have the top of a tree right outside my window that gives me the illusion of being closer to nature. Sometimes it is more than an illusion when a cardinal perches on a limb for awhile, or a wren, and even once, a macaw that had escaped from someone else's space. I have learned in the city to love my space; it is the only place where I can be truly alone here. It is very big in that sense.

The room where I have my chemotherapy is about 6' x 10'--I can't be exact because I am too embarassed to pull out a measuring tape and find out for sure. It is small for such a big production in my life. I have a window in my space there that looks out on other buildings. I can't see the sky, but it serves as a reminder that there is a world beyond that I will eventually, after the all day treatment, be able to return to. There is one solid wall behind me, and a glass/plastic bubble wall beside me opposite the window. Behind this bubble wall I can see the motions of another patient in his/her treatment space--if I look really closely, I am able to discern if he/she is lying down or sitting up. In front of me is a curtain that the nurses often try to close, but I insist stays open. I don't mind if anyone looks in, and I don't mind if I see the patient across from me. Actually, I prefer to see human beings moving around. It is less claustrophobic that way. And there I sit, in a lounging chair, with a TV screen on a metal frame I can pull toward me to watch, or to turn off and push away from me. I have an intravenous stand with a number of hooks for different bags of liquid poisons that will be fed into me. There is a device that automatically controls and monitors the amount and speed the bags are pumped into my veins. There is a chair and a mini desk where my nurse comes to record what is going on with me. Am I still alive? Am I in pain? Has my veins collapsed yet? Am I sick? What is my birthdate? All these questions and more to make sure she is doing what needs to be done to the correct patient, no less. Depending on the particular nurse, the space gets smaller or larger with her presence. I think I unconsciously decide which it will be according to whether or not the nurse has administered my IV without blowing a vein or with undue probing and poking and bruising. I've had only two nurses so far that have done this well, Maria and Maya; and whenever they came in to talk to me or do anything, their presence made the space a safer place to be.

So is it the size of the space that makes it real as a living space, or are there intangibles that actually create a feeling of living space? And does this matter?
I wonder?

Entry #4 of this neverending story

One of the things that surprised me about the city was how helpful people would be when you really needed it. My first night in the city, I took a city bus to an acquaintance's apt. downtown. Only I didn't go downtown--the bus went uptown. By the time I realized it, I was in that mythical place called Harlem. I asked the driver how to get downtown, and he laughed. Can't really do it from here, and he proceeded to give me a an indecipherable description of what I would have to do to get to where I wanted to go. I got off and looked for a bus going the opposite direction, and for the first time felt scared and out of place. I definitely looked out of place and lost. Before I knew it, two middleaged women, very black and very large, approached me, each took one of my arms, and as one force, they escorted me five blocks to a downtown bus. As we moved along, one explained how she was on the bus and heard the runaround the driver gave me. She said, "He had no right to do that to you. Obviously you are new here and you could get yourself in some trouble wandering around here at night." So she had gotten off the bus and had enlisted another woman
to get me where I needed to go. When the downtown bus came, I thanked them and they reminded me to "Come back up here in the daytime," and visit all the places they had recommended. I did just that. Now in New Hampshire I would like to think that someone would help out that way, but I doubt it. New Englanders keep to themselves and watch, rather than interact with "flatlanders." oh, if I was getting attacked, someone would intervene; but otherwise, they'd just look at me and think, "What's that fool think she's doing?" We really learn to become observers in the country. We know everyone else's business, or think we do, from what we see.What we haven't seen we can easily fill in with our well-honed, vivid imaginations. Winters are long in New Hampshire, and isolating, so we get plenty of practice.

Now there are some differences at the Cancer Institute here in the city. There are the new people who gather in the reception area waiting to register before proceeding to another floor. It never ceases to stun and horrify me how many women are there, all ages, everyday--many more than men. I have tried to smile, or make eye contact with the new people as I wait to get called for blood work on the same floor, but it doesn't happen. I guess I look like an "oldtimer" to them since I have no hair, and perhaps I frighten them. The people who have been going for treatments when I have, or have had the regular bloodwork for platelet count when I have, become warmer toward acknowledging, and often, interacting with me. Sometimes we nod, give that knowing look of "I wish I were anywhere but here," or, the more direct encouragement of, "stay strong." We of the chemo crowd become experts at discerningt who has wigs,who will need wigs soon, and who is presumptuous enough to go without. I tend to initiate a little pertinent conversation with those who can still smile. Those who can't and who look like they have given up, I stay far away from--those are deadly vibes. Can't afford to go there.

Then there are the people you know outside of the Cancer Institute. I have found that it was a blessing in disguise when I relinguished my wig after only one foray into the workplace. People felt freer to approach me and ask me whatever was on their mind rather than avoid me or be clearly uncomfortable. For the first week, I got questions and positive responses--oh I had a couple who started that missionary demeanor of poor you, I'm so sad for you responses as they look deeply and sadly into my eyes. Those reactions sap any positive energy I've mustered and those people are deadly for me. But like I said, more were just concerned but supportive and could thereafter smile, joke, and be regular with me. That's what I need the most, humor. Works every time to put things into perspective--much like my two cats attacking my wig and styrofoam head as if they were wild things. There are still a few people who continue to avoid me. Twice I stood in front of two different people just to see if that would force at least fleeting eye contact, but I almost got run over both times and it pissed me off royally. So shame on them, and shame on me for even caring. And then there is the real wonderous change of men calling me miss instead of maam. Sure makes me feel younger and sexier.

So what are the insights from all of this? If you put out positive vibes, you get them in return from those who are open. If they aren't, if they are too caught up in their own heads, then let it go. But overall, I have become much more outgoing in the city than in the country. Maybe it is a necessity when you're bumping into so many people all the time. And yet, there is still a sense of privacy in the city that is not available in the country. I will pursue this thought in my next entry.

Entry #3 - Of a Long Journal

Let's take of of the above at a time. The baggage I refer to is as varied as what I might have in my pocket on any given day--right down to the lint particles. The past,present, and future no longer remain in their nice orderly categories, but instead, whirl around blending and popping out in the most surprising and distruptive moments. Quite unnerving to say the least. I will not go into specifics here, although I realize it will weaken my argument if I don't. The things in this category belong to me, my old therapist, and perhaps a few examples to my most intimate friends. Otherwise, forget it.

Now the second area, vulnerability, I have no qualms discussing ad nausea. Why, because rarely does a day pass when something doesn't prick my sense of well being and put me in my place, whether physically or emotionally. Some are great and some are small. The biggies are stand-up stories to tell about survival simply because I miraculously did just that, survived. I have plenty of NH moments like this, but also some city ones. Like the time I was walking from one of the midtown Citi Corp literacy sites and suddenly heard a muffled cry behind me. I stopped and turned, and saw a well dressed man with a briefcase in the process of being attacked by three males--a mugging. I stepped toward them to scream and make a commotion when I heard a
rasping female voice next to me. I turned to face the voice and was face-to-face with a thin small woman who held a very big knife up. She smiled and quietly said,
"You don't really want to get involved, do you?" Without hesitation I said, "No way," and walked quickly on without looking back. As soon as I reached the nearest building and lit doorway, I slipped in and had the concierge call 911.

Then of course, are the little events that act like earthquakes with their far reaching effects: like when I was consulting in different school districts. I had the habit of arriving earlier than my appointed time and going into a diner or deli nearby to "research" the area since in New York City, every couple of blocks becomes a "town" unto itself with its own ethnicity and culture. I had made a pack with myself to take every opportunity to learn, and so, on this particular day in Brooklyn I went into a diner, sat at a counter, and ordered a coffee. The next thing I knew, a man and a woman in dark clothes sitting next to me got up in an apparent huff, looked at me with accusing eyes, and spoke to the counterman about something using a word that sounded like "shiksta." I remember the sound of this word because it clearly had something to do with me since, when saying it, the man stared right at me with such distain, I actually cringed. To this day I do not know how to spell this word or the exact definition, but I have learned it is Hebrew and it means I'm some sort of dispicable female outsider who is not welcome in that particular orthodox community. I remember feeling as though I wanted to defend myself, explain myself, or simply just get the last word in, anything but sit there and pretend I didn't care. Instead, at the time I just shrugged, noticed how everyone in the place was looking at me, noted for the first time their fairly uniform appearance, demeanor, and garb, and knew I would not forget this incident. I haven't. I believe this is how prejudice insinuates itself into out lives. It did mine.

So how in heck does these ramblings connect to chemotherapy? Maybe they do, and in some ways, maybe they don't. But chemotherapy is like living on the edge and it definitely is quite insidious. It is a treatment of choice, a pretty straight forward one for most kinds of cancer, very common place, and everyone seems to know someone who has gone through it. What isn't so apparent is that chemotheraphy is not one thing--it encompasses any number of types, combinations, and dosages of toxic poisons whose sole purpose is to kill any and all fast growing cells inside your body, good as well as bad cells. Your hair may or may not fall out depending upon dosage, but also the type/s of chemo. you are given. The more toxins and strength of the toxins, the more likely your hair will completely fall out within a week after your first treatment. There are all sorts of possible side effects. Your skin may develop little blisters, dry scales, or general run-of-the-mill teenage-type acne. You may or may not become nauseous. You may or may not lose weight or actually gain weight. You may bloat, or you may shrink. You might have one or more of these combinations: nausea and vomiting, excessive and pervasive tiredness, and bone and joint pain. Side effects really are insideous creatures unto themselves. They are not predictable nor are they enjoyable. They may be treatable with other prescribed medications, but then, those medications have their own set of side effects, too. A vicious circle I chose to avoid.

And so I learned to cope as best I could since I had the real toxic, evil combination of poisons that took all day to intraveniously be administered. Each of my senses had a role to play in this---but the role my each of my sense took was dictated by the toxins, not me. So the first thing I learned was I exerted little control over my body now. The best thing I could do, perhaps the only thing, was to keep moving. Actually, in reality, we as humans are never really in control of anything and just think we are for our own peace of mind. So consciously I needed to accept my vulnerbility, the day to day, sometimes hour to hour changes in my body--the cramps in my joints that felt like broken bones scraping together in the hips, the knees, the ankles, and god help me, every single toe. I have a really high tolerance for pain, but this was way out of my league of endurance. I can only liken it to what my left index finger felt like for a month after a wood chipper devoured the end of it up to the first joint and I had to have it reconstructed. So pain became my reality. After each chemo session, the length of the pain increased from a few days, to, in the end, a week and a half. And feeling weak---of that one is hard, too. The toxins and the pain combine to weaken body and spirit. You can do a lot to keep the spirit up, at least I found that possible by just forging ahead with my life; but keeping the body up was not possible and hence, in reality, I was more physically vulnerable.

Chemo. also endangers your red and white platelet count. On going CBC tests are required to see if you are able to take the next treatment. And naturally you have to avoid catching colds, the flu, or any infection whatsoever. The hand sanitizing companies must love chemo. patients. Not only must you use it on a regular basis as an urban dweller, but you become obsessed with trying to create an invisible barrier between you and all the germs that inhabit every single space that you may touch or where you may breathe. I considered taking out stock in these sanitizing companies, but I believe TIAA-CREF already does so I'm covered. I wonder about things I normally had not wondered about, like, can your body die and resurrect itself? This is not a Jesus question, but a night of the living dead type of question, I believe.

I'll continue on in the next entry on current notions.

Entry #2 of A Long Journal

My sense of hearing in the city. It is accosted 24-7,and as the saying goes, the city that never sleeps, nor did I at first. I have learned how to screen out the fire engines and most emergency vehicles other than ambulances, which have this piercing whoop that doesn't seem to fade within any reasonable distance. The subway rail screeching also has had a similar effect on me. I admit, however, that although my hearing has probably been permanently altered by the loudness of what I endure on a daily basis, I do enjoy hearing the multicultural array of languages that surround me. Each is like a unique form of music that I cannot understand at all, but can't help but appreciate.

Of course, with chemo., as it spreads and takes over my body, my sense of hearing has acquired some very disconcerting phenomena: the echoing effect, and the buzzing cloud. The echoing effect comes and goes at will. I will be listening wholeheartedly to a friend speaking, and all of a sudden his or her voice seems to come from within a deep cavern. The more I strain to hear the words, the more they echo. And then there is the buzzing cloud that usually appears during and directly following chemo treatments. It's like a cloud of static surrounding my inner ears. The more I try to shake it away, or swallow to let the pressure release, the more stubborn it gets. Thank goodness neither of these irritables last for long. And the further I get from my last treatment, the rarer these phenomena become.

Now I come to my sense of sight. This is my very favorite sense. My deepest horror is to lose this sense. In the city, it's constantly in a state of being refined. Like an owl, I am able to look up, down, and almost 360 degrees around me. It's called survival instinct. And my sense of touch--well that is pretty much numbed out between all the walking on pavement and the amount of hand sanitizer I go through in a week just coming and going from work. My sense of sight and my sense of touch are both affected by chemo. My sight fades sometimes around the edges. Got it checked right away. Turns out it's the drugs, nothing permanent. Scarey. Happened once crossing the street. I took a deep breath and huddled as close as I could to another person beside me as we crossed hoping someone could see. And touch, well, with all the needle holes in me from blood tests, blood counts, and the intravenous treatments that were successfully administered after a few blown veins, well, I think this speaks for itself. I can't stand to be touched right now. It hurts. And the chemo. has not made me nauseous, but it has made my bones hurt relentlessly. It feels like someone broke them and is rubbing the broken ends together. This type of pain has increased as the treatments have gone on. If I don't move anyway and bear the pain, I am afraid I'll never move again. So touch---out of the question except for an occassional hug which is much appreciated.I try to embrace the pain, since I have no choice. It is a reality.

Now we come to the sixth sense, which I will not debate as to whether or not it exists. I assume we all really know it does. This sense becomes a must for any city dweller. It serves as a major survival technique and gives you the edge no matter where you go in the city. Some people call it "trusting your gut," but I call it, a built-in skill of intuition that can be relied upon even in the diciest of situations. Trust it and you live; ignore it, and you're in constant trouble or dead.

The edge, this I believe is what makes urban living a must for anyone at some point in their life. When I came, I thought I was a mature human being quite capable of adjusting and revising my beliefs and strategies for living whenever necessary. Eh, right! I had only scratched the surface of what was to become an advenure in discovering what my limitations, biases, beliefs, capabilities, and understanding of who I am, are and might be. Everything is tested her, not in a gradual, one-at-at-time common sense way, but in a bombardment quite similar to what happens to the general five senses and which results in the refinement of the sixth. Perhaps the most jarring changes and learning have come in two areas for me: discovering I came with baggage that could no longer be ignored; and discovering I was vulnerable much more than I ever thought was possible (no thick skin had I--rugby player or not).

In my next entry, I will explore these further and tie them in as to how these learnings really have helped me cope with the chemo. adventure.

The Beginning of a Long Involved Journal - Entry #1

There's too much to say, and words don't come easy;
but I'll try only because it keeps gnawing away, these
thoughts about how living in New York City is a lot like
trying to endure chemotherapy.

When I first moved here, however temporary I thought it would be,
it was a challenge to all my sense. My sense of smell--accosted by everything from the air to the "ground," yes, especially "the ground" because there is so little of it. Mostly there's cement, and it has no drain-off so you can just imagine what puddles there, especially in the subway system as well as in alleys. I could also smell the people crammed next to me and all the ethnic foodstuff eaten recently, like: curry, garlic, tofu, feta cheese, sesame noodles, and various spiced meats that I have yet to identify.This seques into my sense of taste because these two senses, smell and taste, are so intricately entwined. New York City and its environs are the crossroads of the world and its foods. After awhile, with experimentation and much daring, I have begun to learn how to identify just what differentiates each ethnicity and/or cultural delicacy. I'm still working on it, and loving every minute of it for the most part. Back home in New Hampshire, I think some of my friends now consider me spoiled because of my newly developed tastes; but I think of myself as simply enlightened. I do prefer the subtle and not subtle differences of Thai to Cantonese, New York Pizza to chain restaurant cuisine, Jamaican to Haitian, Dominican to Cuban, and Mexican to Argentinean.

But all of this goes for naught once I began chemotherapy. Slowly my sense of taste acquired a metallic quality. I have no idea why, but it's there and it eventually came to deaden all but the very sour and very sweet taste buds. That led to an all out meltdown as far as my perferred dietary habits. Nothing is filling because nothing satisfies hunger unless it is sour pickles, cranberry juice, Pom juice, or else from the forbidden land of outrageous sweets. Yum!! And I certainly have partaken liberally. Calories abound there, and I will not deny that some savory satisfaction can be found in this food group. But the weight gain follows rapidly, a vicious circle of the sour awakening the taste buds for the sweet which soothes them. I gained 10 pounds. My sense of smell is also blunted, in fact, it began to become quite eccentric in its behavior. The smell of urine is just as disgusting as ever; in fact, since it is the ony smell I often can distinguish now, it appears in many more places than I once realized. All other smells are either amorphous or downright among the disappeared. I used to be allergic to perfume. But now I am not. Either people have ceased wearing it, or my nose no longer distinguishes such concoctions. What's more, my nose has acquired the habit of either continually "running," or else bleeding. Hard to smell anything from behind a tissue.

My next installment will proceed on to another sense--hearing.

A Poem

Ping, ping
like radar we move without touching.

I don't have to look to see you there
middle-aged white woman with a Danielle Steele book
African american young male reading what seems to be
a copy of a local college's syllabus
an older man of indeterminate age reading a
tattered copy of "El Diario" and a Carribean woman
chatting with another over pictures of the latest
hurricane's devastation while an elderly man
hovers over a copy of "The National Creed,"
we all read or seem to be
engrossed in some kind of activity or another, rather
than watching each other without really looking.

The Asian-american woman with an irridescent blue
compact powdering her nose and reapplying her lip gloss
as her male friend beside her strokes her knee and
speaks in muffled tones to himself perhaps, or not,
since he has a black wire stretched taut between one ear
and disappears into his pocket, perhaps to a cell,
it's so difficult nowadays to distinguish between those
of us who are really crazy and those who are simply
attached to the latest communication device.

Into the tunnel we go
deeper into the darkness where
even cell phones cease to chime.

Like bats we are aware of
every thing we cannot see.

We, who are native to this passage, stand out
from those wo are just passing through
it's all in the absence of color
black suits, dress coats, suede parkas
black sweaters, jeans, briefcases, black tees,
athletic shoes, dress shoes,fuck-me heels,
black flats, pagers, gloves, hats,
computer cases, sliver phones in black cases, caps
with Yankee logos,Mets,Knicks, Liberty, black
wrinkled plastic bags that hold all the belongings
of a few that live here and there and in the darkness
black is the standout feature that separates
Bronx, Manhattan, and Brooklyn from the
rest of the the known universe.

We wind our way through the tunnels past the
blue lights that designate where a phone lies
below, a connection in case of an emergency
between the needed and the keepers of the MTA
so they can shut down the third rail power but
only for 30 seconds before the caller must indentify
his or her official NYPD or transit standing,
although perhaps things have changed now
that terrorists from abroad are creeping around the
edges of our lives, terrorists that have the potential
to put our own home-grown kind back into the shadows
of an afterthought,
these are dangerous times.

Over the bridge
through the tunnel to
the lighted station we go
where the train disembowels and

ping, ping
like lemmings we
resume our destiny.