Friday, February 26, 2010

A diagnosis and an appointment next Tuesday, 10:00

This is a test. If I can sit here and spin a story, then I've made considerable progress. The gist is that I'm not on the slippery slope, but am still in deep shit.

My preparation for the colonoscopy was less than adequate, but what little I drank of that stuff undid the progress of the previous two days when I'd at least been able to eat a little. 

We got there. And I lied through my teeth. "Well, I drank almost half of it," I said to the first nurse. "Well, he's probably not going to be able to do the procedure. And you'll have to go home," she said though she gave me the gowns to put on. Another nurse put in the IV while she asked my history which I gave a bit of reluctantly. And then I waited, maybe an hour, giving me time to review my history of colitis that started in 1952, the old friend that plagued me for years at a time, causing much weight and blood loss.

The next nurse asked how much I drank of the medication. I lied again (never would I have admitted that I started throwing up before finishing the second glass) and she repeated that he probably wouldn't be able to do the procedure before wheeling me into the room where I waited. She tried to ask my history and I gave her a few high points before some fellow, who looked, from my vantage point, rather like a sweaty car salesman. I forget his name, but he wanted to do the procedure, "It's alright, I've done them before, he said airily." I agreed because I agree to everything, but didn't sign the papers because he wanted to hear my history. "But I haven't seen my doctor. I want to tell him," whereupon he disappeared. The nurse said, "He seems to be quite good at what he does. He's not just beginning." 

And I waited.

Finally my doctor came in (not all that different from the other one, but he had a good recommendation from my doctor) and I asked if I could tell him my story. He was rather rushed and probably would have preferred not to listen, but listen he did. " I'm going to use a metaphor," I said. "Metaphors are alright," he said. So I talked about getting the first pains I felt a month or more ago in the lower colon which scared the shit out of me (this wasn't the metaphor) because they were so similar to those I had for all those years of ulcerative colitis in high school, that my whole system felt as it it was roiling, as if it was furious, and then I gave him various dates of long-term attacks, the last of which was in the early eighties when my struggle with the head of the department was so entangled and brutal that all I could do was bite my tongue, roil my gut, because I had to get my daughter through high school.

I apologized for not have drunk enough of the stuff and he said it might be alright, what with suctions and water, whatever, who cared. "I'm sure it's colitis," I said, signed the papers and drifted off when the nurse pumped in the awake-sedative. I heard myself (who else could it have been?) asking, "Is it cancer?" "No, no, you were right. It's colitis. You were right." And I asked again, about cancer, which I hadn't known I was worrying about. 

And at the end, when I was a bit less sedated, and before he dashed out to the next person, I said, "Good, can I come to your office and get medication?" "No," he said, "I don't do that. There are two gastroenterologists in the practice. You have to wait for the biopsy results and get an appointment with one of them next week."

I'm still in deep shit. Food is incredibly unappealing. I have an appointment on Tuesday. It's not the slippery slope.  Not well written, but at least written. Longer than two sentences. THANK YOU SO  MUCH FOR READING THIS!!!!!!!!!!!!!!!!!!!

Saturday, February 20, 2010

Lost for a Week

My most rational decision this week was to call the doctor on Tuesday morning. Fortunately, he had an appointment open for that afternoon.

He wasn't entirely helpful, though he did stress the need to have a colonoscopy. What I wanted was a magic cure for this roiling GI track, a prescription for medicine that would work instantly and a diet plan.  I may have overemphasized my certainty that the problem is lodged  in the lower colon so he didn't start with general solutions. Luckily Mim has been consistent in suggesting bland diet tricks. If only food was (or is it were?) interesting.

My most irrational decision was to go to Jury Duty on Wednesday morning. The court house is located here in Chelsea. The bus took me most of the way, but I had to trudge in the street for a number of blocks, snow icing the sidewalks. And I sat, went to the bathroom, sat, went out for a break, sat. No one struck up conversations. A tall guy, who looked like an artist or as if he rode a bicycle in city traffic to deliver important packages, was reading the New York Times. I wanted to ask if I could read what he'd read, but he was two rows up and never made eye contact. Later, when we were called into the courtroom, he sat next to me, fussing around, looking through everything he had for the number he was given. Finally I noticed that he was sitting on his #12 ticket. "The punishment for your perfect posture," I said. His back was so straight it was wonderful to see! And he had a grizzled face, ruffed hair.

Judge Wechsler was impanneling (how do you spell that?) a jury of eight people for a case about drug dealing that would take three days. My number was 27. We'd all been asked questions - Have you worked for law enforcement? Would be you able to listen to police evidence without bias? Is there any reason you can't be on a three-day trial? When we raised our hands, our numbers were noted.

Of course, there were challenges, dismissals, discussions with the judge, lawyers and plaintive, until the jury was almost complete and I was called. 

My sense of myself, someone who obviously picks up bottles in the trash, was profound. The blue coat, which seemed to fitting (for dog walking) at the beginning of the winter, is lumpy and stained. My scarf, originally so useful, draggles. I'd picked a soiled Chelsea Library bag to lug a book and papers in. As I crossed the courtroom, to the bench of this pleasant fellow who had made any number of jokes in his short introduction after we all arrived at 8:30, my rehearsed lines evaporated and I found myself saying 'blah, blah, blah' rather than describing my symptoms. It ended, thank goodness, with me being dismissed and the fellow with the perfect posture, who raised his hand to the question about being unable to spend three days in a trail, being on the jury.

I got home too late to call the endoscopy department, but on Wednesday, made an appointment for next Tuesday, 1:30. Then, hopefully, I'll find out what's wrong, why nothing tastes good and this roiling continues.

In the meantime, the dogs have enjoyed my prone presence. I've read "The Spiral Staircase" by Karen Armstrong, compelling until the last twenty or so pages.

I am disheartened and confused and uncomfortable. I wish I were hungry. And have my fingers crossed!!! At least I have to be mobile to teach on Monday and to drink all that ghastly stuff for Tuesday.... So much for an overall plan to keep working at all costs. Apologies to all my blog folks whose writing I've ignore. I'll get back to you. 

Saturday, February 13, 2010

Lost for Words

I'm really lost for words. I don't think I'm lost, though I've been fighting a lingering stomach ache that reminds me of the pains I felt in high school when I had colitis. I'm imaging the worst right now while taking Tums and changing to lactaid milk.

I'm the sort of person who goes to the doctor certain he'll (or she'll...but that was my marvelous Dr. Isselbacher who is now a concierge doctor who I simply can't afford) find  something disastrous wrong with me. I've been this way for 100 years, but realistically I'm getting closer to the time when it will really happen, no fooling. So all that practice wasn't worth it.

And maybe it's worse because soon after Joe died, in the last two weeks, two women I know have become widows. Both had exemplary marriages, each has no regrets about the past, the strength and pleasure of the relationship, or about the medical care. Both are grieving, naturally, but with the sense of how much they were allowed to share, experience, build with their husbands. And that's quite wonderful. Very remarkable. To be celebrated. 

So, the last two weeks have felt oppressive, though I have participated in the filming of Paisley and somebody, a new production by the folks downstairs, Chris and Krissy, that concerns a crazy brother and sister, and their harsh mother (guess who plays that part), limping in snow, clay figures, dancing and smashing. 

And I have produced a less-than-three-minute video that involved smashing all the clay boxes I made a year or so ago...Krissy did the hammering and I did the video with a over-text that says, Projects     Are     Never   Ever    As    Satisfying   As     This. 

I am almost done with  my taxes.

And survived the teeth cleaning and the X-rays that proved, to the amazement of Lyn, my grand hygenist, and me, that there is bone left and even though I've ground down one front tooth to almost nothing, my front teeth are not in eminent danger of me losing one. Whew.

And lived through my second Workshop class. Though we have this Monday off, hard with a once-a-week-class.

We didn't get the major snowstorm in spite of being excited into fear by all the weathermen (women) advertising it.

I've seen three movies with my friends, Lorna and Warren, who have On-Demand! One was a quite dreadful cop thing with James Wood and Brian Dennehy, (Wood looked at mean as he always does, playing a hit man, his gorgeously ugly face, and Dennehy looked as if he could hardly breathe from too much food, but was his comforting self) that I really liked, and Warren didn't seem to mind, though I think Lorna suffered through it. (We had allowed ourselves ten or twenty minutes to see if it was worth it and I kept hoping they wouldn't notice the passage of time because I adore crap movies.) And the other two were both Kill Bills, that Lorna certainly didn't like, oh, no, why's she doing that?, though both Warren and I appreciated for the correographed violence....  I think I'm going to have to suffer through a comedy for the sake of Lorna, a willing, but not easy sacrifice.

And saw "44 Inch Chest", a British film with Ian McShane, my pinup, such a gorgeous, smarmy  man, among others in this extremely funny, foul-mouthed comedy (I think) about love, marriage, grief, rage and the insane friendship of men. It was fantastic. Two of us, the man five rows down and me, in the mainly empty theatre, laughed frequently. If Lorna would consider a film like that comedy, I'd be happy, but it involved beating and the threat of murdering along the way.

And read "The Immortal Life of Henrietta Lacks."

And am going to quit the Spanish class that's today at 1:00 since I think that's one thing too many. Besides, I have no room in my brain for anything else and I don't 'hear' languages well.

I filled out the form and took my $25 check in in the hope that I will get a plot in the community garden.

And sometime I'll open the box that came in the mail a week ago, with "The Real Story" in it, my 25 copies of my first chapbook. I can't face them. Or send out the copies I should send out.

At the bank, I was so shocked that my savings account had been turned into an interest bearing checking account without my knowing, "How much interest does it pay?"  "Oh, about the same." that I couldn't remember my social security number for the first time in my life! I hope that's not a sign that I'm disintegrating. 

And I got to the Y to sign up and had left my checkbook on the living room floor after paying bills.

Anyway, my apologies. I haven't been reading or writing blogs. I've been muddling along with the mugs who you'll see at the top of this post. Bogie, my  main man, needed a bath because he had stuck poop. He hates baths. And Tulip, the new gal, did something dreadful. And Happy, my daughter's dog, is always in your face, wanting, wanting, wanting, needing, yes, me, me, me.

Krissy's line is, "I'm going to Daunce Again."

Chris's line is, "The earth is in very delicate balance."

"The Immortal Life of Henrietta Lacks"

I've been taking advice from PBS, reviews and friends and ordering the books from the library. Sometimes it doesn't work out, but in the case of Rebecca Skloot's book about the cells taken from Henrietta Lacks' cervical cancer, without her permission, in 1951, reading it was a gift. It's beautifully written -- the language is clear and direct, interweaving the years it took the author to tease out the scientific, legal and economic facts along with the effect that the death of Henrietta Lacks had on her family.

It sheds light on the 'colored only' quality of medical care then, the medical advances possible because of the remarkable ability of her cells to divide continually, thus becoming immortal and invaluable to scientists experimenting in various fields, the bioethical questions about informed consent and compensation, and the history of her children, an extended family still unable to afford medical insurance. 

"There's no indication that Henrietta questioned [her doctor]; like most patients in the 1950's, she deferred to anything her doctors said. This was a time when "benevolent deception" was a common practice -- doctors often withheld even the most fundamental information from their patients, sometimes not giving them any diagnosis at all. They believed it was best not to confuse or upset patients with frightening terms they might not understand, like 'cancer.' Doctors knew best, and most patients didn't question that."


Saturday, February 6, 2010

Thank You

Four or five years ago, when Bogie and I were still volunteering at a home for women who had been in mental hospitals, I went to a weekend workshop with the house coordinator. And heard someone talk about the rope network (that's not the term she used) that a mountain climber needs and that we, mere grounded mortals, need. The people holding onto your rope to keep you safe might be from the past, valued figures from history, friends, family, I suppose. I thought that was a good concept though my rope group felt fairly fragile at that point, my having just been ousted by my ex who had been waiting for his chance. 

It's odd for me to think that a blog serves something of that purpose, but I have been touched by the kindly responses from strangers. Now, don't get me wrong, I'll hardly notice if there are unpleasant comments since I'm steeled against them, as anyone with  my background, in particular, and experience as an (artist...I hate that word, but I'm going to use it now since I've branched out from still photography to video and writing, poems and memoir, and what could I call that? generalized commenter on what I see around me? Yes, that's better...)... my experience as a generalized commenter has, naturally, led to lots of rejections. I don't mind them at all since that's in the scheme of things. 

When I was just starting out, taking photographs around to various editors in New York, and staggered out from a meeting with an art director who hardly liked my low-key, let's-have-lots-of-distractions-in-here-because-otherwise-the-photograph-would-be-boringly-specific-like-those-we're-trained-to-think-are-significant-in-magazines-and-newspapers images, I called a friend of mine, the man who taught the only course I ever took, "The Photography of Human Behavior, at Columbia, and he said, "You wouldn't take your penis to a nun and expect her to admire it." 

I thought that was great advice, a quick way of teaching me that there are some people who will respond to my style and many who won't. (He, Paul Byers, was finishing his PdD in anthropology and cared only for the information in photographs, not for the aesthetics. I happen to care, to some degree, for both, though I'm more interested in information.)

Aside from that neat bit of advice, I have been isolated from the need for response because it's been such a hard road to find my own voice. After my mother died when I was twelve, and I lost almost all memory of those years, all sense of who she had been, what it had been like living within a family, the chaos of my teenage years made defining myself even more complicated. My goal was to know what I felt, other than by the evidence of ulcerative colitis, all that blood in the toilet bowl. And it's taken years ....   

And, with the loss of that important relationship, five years ago, at the beginning of this blog, I became more inward. I'd been quite sure of what I felt with him, the long years of being thrilled and embroiled, the pleasure and insecurity of knowing and loving his sons, the fast way he could silence me with a barb since I was a fish in a barrel, pseudo-waspy-weakling, the way I could get angry and want to straighten things out, (oh, by talking, what a bad choice).

So, for these past few years, I've put my head down, talked through writing, and tried to get a sense of my self back. It's always been easier for me to write than to talk, but that was a particularly silencing experience since he and I were comically tuned to different stations. And I took the loss to heart, as is my want.

So, this is a thank you to my blogging community. I hope I'm as useful to you as you are to me.

Friday, February 5, 2010


I was at Starbucks, fiddling around with some editing, when a man in a wheelchair and a younger woman came in. They sat down opposite me, at the table reserved for handicapped folks. 

Bill, a guy who works at the library here in Chelsea three afternoons a week, and I usually fight for that table because it's larger and near an outlet. In fact we've struck up a friendship over this particular spot which we, I must say, consider ours. Outlets are very important and there aren't that many. He spreads out his accounts, plugs in his laptop, goes over his money. As he says, he has a right to it because he has breathing problems.  

But Bill wasn't there, and I'd taken the table opposite it, and said hello to the fellow after she pushed him in and went to get their muffins. He nodded back and I asked how he was, and he made a Pfffft noise accompanied by thumbs down and then gestured. "Do you want me to come over there?" He did. 

She explained that he has aphasia, which was quite apparent, and he pointed to his right side, ", no, no." I sat with them until she got ready to leave for a class that evening. (She's a science writer as well as his caregiver. His wife is a social worker.) And we managed  a good, long conversation, during which he found many words and told me a lot."Did you have a stroke?" "You must be frustrated." "Yes, yes, yes," especially since he has a PhD in philosophy."Do you mind if someone guesses at what you're trying to say?" She told me that he was fifty-five when it happened and he told me that he's sixty-three now.  

I learned, though not in this order, that he was born in Germany, came here when he was three, "Holocaust," speaks German, French, grew up in Newark, "then, good, now, pffft" which is certainly true because it's become a poverty stricken city with a lot of crime. I think he went to the University of Chicago, then to Columbia and followed his favorite professor to SUNY Stoneybrook. That he got married when he was fifty, and his wife was forty-three, the aid said. (Her last name is Martin. His first man is Steve. That's all I can remember of those details.) And that he'd had a lot of girlfriends, "one hundred." "How old were you for the first?" Well, he was seventeen and she was fifteen, Jane (not Joan) Sokolov, in high school, though he visited her in Chicago when he was nineteen. She was an actress, briefly, not too good, lived on 11th Street, Greenwich Village. He was extremely happy when I figured out what he was saying and added that I'd lived on 11th Street, also.  "One hundred?" He smiled. I was flabbergasted and should have asked why he finally got married. 

I suggested that he might write poems, since he used to write, which lead to them talking about the aphasia group where he met a seventy-seven year old doctor, Leonard Zion, dead, who was able, slowly, to write a book of poems that was published for his friends. Steve has a copy and they'll put it in his backpack so I can take a look at it if we meet again. And he conveyed how bored he is by the films they see in another aphasia group. "Tom Cruise" was followed by a no, no, no.

When I told her that she has the best job, she agreed. Evidentially he's made progress in speech since she's been working with him. But the body, "Pfttt, no, no, no."            

Tuesday, February 2, 2010


When I was sixty, I gave up on therapy. About time, I said. I don't know the number of therapists I'd seen...maybe seven. I don't count the erudite French analyst who my ex and I saw as a couple. His most repeated phrase was the 'death drive,' which  meant nothing to the ex, who was just hoping that these hours and the money we were spending would fix me, and, oddly enough, nothing to me who had noticed, but didn't care, that I'd chosen a man who wasn't emotionally available and was quite content with his life, thank you, don't ask me to change. 

Besides, who changes? (If she is wedded to the death drive, which means making seriously bad choices that will lead to consequences.)

Over all these years I have changed in many ways, become competent, focused, able to work on serious projects. And I take pleasure in that. I don't think that I merely picked myself up from all the scraps and scrapes I dove into, the largest of which was having a daughter without any clear way of supporting her and without a partner who would help either of us emotionally or financially. 

But I do pick myself up and move forward without really noticing the cost of this habit. Without grieving for what I've lost. And with a puritanical determination. Breaking up with the ex after ten years was marked by one short bout of sobbing and then getting on with all the work of moving out and back into this house. The cost of that loss was submerged under the effort it took to carry on as if nothing too serious had happened.

I'd like to be finished with this coping technique. Please. Which is why, at the age of seventy, I've gone back to therapy, every two weeks. I like the waiting room. It's pleasant to sit there and work on whatever project I'm trying to edit. Perfect comfort. 

And I like this psychoanalyst who is even older than I am, still taking on a few patients. His expressive face. The frowns and grimaces, the occasional smile. And he's smart, of course. And I'm trying hard with my agenda in hand, which is to figure out how to make the next ten years different. I think that the change I'm looking for was expressed by my friend, Susan, who used the word 'entitled' in a recent e-mail. 

I normally interpret that term in a disdainful way...those entitled folks who have more than enough money, who haven't had many severe difficulties in their lives or had to struggle all that much. Or who weren't infants dropped into alcoholic families or other circumstances that early-on warp a sense of optimism, if not the ability to keep chugging.  

I'd like to feel entitled to have a good ten years, assuming I live that long. I imagine that some of you who happen to read this will think -- oh, for dog's sake, she'd done pretty well, has a (small) pension, isn't seriously ill. Get on with it. Which is exactly what I'm trying to figure out how to do with more of a sense of optimism. As if I'm entitled to have a decent, perhaps good, time. 

This week-end I finished the first part of a big project -- two hundred pages of a vernacular, poemish thing with some photographs scattered in here and there. I'm grateful for Quark, though it's an old, tricky program. And it gave me days of tussles, but I argued with it persistently, and by Sunday afternoon at 3:00, after fighting with the archival printer which stopped every few pages, spitting out a blank sheet, etc, I had a copy of the finished-at-this-stage thing.  And, more to the point,  I noticed that I'd done it. And thought, "Oh, please, just feel pleased. Even if you're exhausted. And take yourself out to lunch after you get the damn thing xeroxed."