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PLEASE START WITH "COME VISIT WITH ME AT HOME", WELL BELOW THIS ENTRY AND READ UPWARDS!
I live in a sleepy suburb in central Connecticut, the "oldest continuously settled town" in either the US or in CT, one or the other, I'll have to check the sign next time I pass it (!). The building, which is HUD housing and meant for low income elderly and disabled residents, is a 12-story highrise, the tallest buidling in town. It sits on the bank of a creek to the Connecticut River, just off the main commercial road into Hartford and a hop, skip and a jump away from I-91, whose noise accompanies everything, especially for those who live on the east face.
Often such subsidized housing is poorly maintained but here no effort is spared to keep the place clean and kept up and in perfect working order, not to mention well-decorated and landscaped. Nothing is ever left for later when it breaks, but is fixed at once, amazingly enough. If you have a problem in your apartment, you have only to call the office and the superintendent or the mechanic will be dispatched to attend to the matter before the end of the day or by the next one at the latest. It really is quite astonishing, given the condition of other places just like it in other towns and cities nearby.
We are a couple of blocks away from (YECH!) Walmart, and from Stop and Shop, but because there is a steep hill between us, they provide a shopping bus every week, and another market, cheaper but farther away does as well. Also within walking distance are two drugstores, chains but smaller at least than Walmart, and Marshalls and several other commercial enterprises that are popular with shoppers. Which is all very convenient if you are elderly or poor and do not have a car. Also just across the parking lot is a large out-patient clinic, a satellite of the largest hospital in the area, where one can get good basic medical care and referrals to specialists in the area, as well as a radiology group and a lab for bloodwork etc.
Not far away in Rocky Hill, though a car is needed to get there, is Dinosaur State Park, which has lovely trails to walk and boardwalks through the swamps where you can see and hear bull frogs and geese among other wildlife. I love to go there to scout out wildflowers, just to test my (old) knowledge and keep my hand in. Joe and I used to go there frequently, but we've only been there once since his diagnosis, and then could only do the easiest, shortest trail. I'm afraid we may never go again...
After having lived in Hartford for 20 years, in a series of more or less run-down and yet expensive apartments, I am grateful to be in such a wonderful building here. Even if I have to remain here the rest of my life, it is worth it, just to have the safety and security of knowing I have a roof over my head, one that I will be able to afford by the very definition. I wish all of us with schizophrenia, especially those who have nowhere to call home, had a place like this. It should be the bare minimum, rather than the best on offer.
This is the view from my bedroom window, on the twelfth floor, looking straight down. I'd have photographed the building from the outside, but they are afraid of photographers ever since 9/11 and I didn't want to worry them...THe next picture, above is the view from my living room window, which is particularly magnificent in fall or at sunset.
Well, it loooks like my kitchen could use a good clearning too! But at least you can tell I've been drinking my shakes, as the blender is out and so are the bananas. The photo is deceptive however. It makes the space look bigger than it is. There is not really room for two people to cook here. The counter fits only one person and there is only the one counter space available. If one person cuts and chops and the other is at the stove, it can work, but it is still crowded.
I think you've seen my bedroom before, so I won't make any comments except to say that yes, it is usually a mess much like this, alas, as it can look really nice and comfortable when the bed is made and the clothing picked up. There are two main rooms in the apartment, in every apartment in the building, the living room and the bedroom. Then there is the kitchenette, and the bathroom. All apartments are exactly alike, except that the handicapped apartments have small alterations, like wider doorways, bigger bathrooms, smaller storage closets and counters in the kitchen where a wheelchair can roll underneath and so forth.
When you leave my living room you can go one of two places, the bedroom or the kitchen. Since you know how much I like to eat, you can bet I go most often to, you guessed it, the bedroom. which I think I have to put into another entry so I'll put this one up as a transition.
I thought you might like to "visit" me and see my humble abode and hear about where I live, so here are some pictures and a little tour. In the first picture above (going from the bottom upwards, you come in through my very short front hall and walk into the living room/study. This is the left "living" side of the room. Command central is the big green recliner, from which I direct all household activities, including the cat, Eemie, who is usually in it with me, but at the moment the picture was taken was snoozing on the big stuffed red chair in the opposite corner. The laptop is open to the title page of my poetry book manuscript, "THE PRAYERS OF THE MATHEMATICIAN."
The next picture, above it, is the right side of the room and obviously the "study" half, though the division is somewhat arbitrary because I use both sides for both purposes and others as well. Note the sewing machine on the left under the window, as one non-study function of the room. THe books are only a small portion of what I have and those are only a quarter of the books I used to have before I did a general purge and got rid of 400 volumes, which I gave to the local library for their annual booksale. I miss them all, naturally. I needed every one of them the day after I gave them away! But I have survived their disappearance, and lo and behold my library is slowly growing once again. The white-gray box with the big black rectangular lock on the white-legged table is a sentry box, in which the visited nurses keep all my meds locked up until they come in the morning and evening. My old agency used a combination lock, which I could pick, and klnew how, but the sentry box is absolutely "un-get-into-able." Not that I have or had any need or wish to, mind you, but it was interesting to know that I could...
Music is "playing" even as I write this, as it plays every day, every hour, every minute, of the day and night. It no longer frightens me and rarely even irritates me, though it sometimes fills my ears and head with so much sound that the whole world seems composed of uncanny "music" (in an unpleasant way), so much so that I can't help but notice it. But right now, it is background musack and so it barely registers.
I have been corresponding by e-mail with various people at the Clinic where Joe has been seen twice already, trying to get things straightened out vis a vis the machines he needs and the PEG feeding tube he may need to have placed earlier than strictly necessary, due to his respiratory weakness. Finally, I found out where the BiPAP (bi-level positive air pressure) machine was to be supplied from, as well as the portable suction one and the cough machine (called an In-Exsufflator) and had Joe call them. Well, finally some results. They knew just who he was and were right there ready to make an appointment to come out to the apartment and get him set up, today if he'd wanted it. Instead, he had to opt for Monday, which is when they are coming, at 9:30 in the morning, when all three of us will be there to learn how the machines work, just in case we are needed.
As to the PEG, or Percutaneous Endoscopic Gastrostomy, this means, so far as I can reconstruct from the words, a hole in the stomach made via endoscope and going through an opening in the skin. In other words, PEG is a tube that goes from the outside of the abdomen directly into the stomach, and through which is poured various liquid food supplements or substitutes, depending on how much if anything the person can take by mouth. It is not that Joe cannot eat any more, or has too much trouble swallowing; if anything, a barium swallowing test today said he compensated well in general for his weakness. But his respiration is so compromised that at some point it may be too low for anaesthesia to be safe, and then it is doubtful they could do the procedure. I have read that it can be done under nothing but local, but this means being fully alert while having an endoscopic tube passed down your throat into your stomach, and I don't know if Joe could tolerate that. Maybe he could, but I don't know...
So we are trying to find out at what level of respiratory capacity the PEG placement becomes imperative, and whether Joe is at that stage now. But no one is answering this question, and I don't know why. It seems a simple enough query to answer, doesn't it? Yet they keep on throwing information about PEG at me, when I know what PEG is, I just don't know at what point it is necessary respiration-wise. The only thing I can think of to do, is to call his pulmonologist on Monday and ask him, go around the Clinic altogether!
It has been a too busy day. We went to the radiology clinic this morning, for Joe to have that Barium swallowing test, which took an hour and a half altogether, including the hour's wait beforehand. Then we drove home to pick up my pills, Then Joe wanted to go out to lunch, which I dreaded but did like a good sport, and ate, like a good sport. We had lunch at the "best Indian restaurant in Connecticut" according to some critic, only because it happened to be nearby and had a buffet. Then we drove back to the hospital and went to the pulmonologist's office and waited there...Finally saw him, a very nice guy it turned out. Joe liked him immediately and so did I. He is writing for Joe's pulmonary function tests etc from the Clinic and will wait to order any further tests until next month, after he sees the records. So finally, by 4:30pm we were outta there and on our way home. Luckily, I didn't have to drive, as I was zonked. But I can't even imagine how Joe was feeling, as he needs 12 hours sleep at night, due to the Zyprexa, and had only given himself 7 last night, I don't know why, of all the nights to stay up late!
But home I am and home I am staying until 11 tomorrow morning, when I have to get up and go to a real salon to get a real -- as opposed to a self-done chop-chop -- hair cut. This time I'm going short but good! BD
I have to rebuild my muscles, which have dwindled to almost nothing in the past year, during which my protein intake, always small, was minimal and sometimes nearly zero in a day. My backside, the gluteus maximus, one of the largest muscles in the body, has shrunk to pancake flatness, so that it is hard to find a spot for my weekly IM injection. My legs are like twigs. My arms are nothing but flab. To get any strength and tone back I need to exercise and add good quality protein to my diet but this necessitates a choice that I find difficult to make: whether or not to eat meat.
I will say at the outset that I am not categorically opposed to meat-eating in others, not on principle. I believe that our teeth, meant for both tearing and chewing, indicate that we are an omnivorous species and that our diet is intended to include animal flesh. I also believe that in the natural order of things – note that phrase, the natural order of things, because we are very far from that state of affairs now – the stronger or more advanced or more intelligent animal preys upon the weaker or less wily. I am secure in the knowledge that there is a natural hierarchy of prey and predator that starts with the bacterium and smaller, and goes up through one-celled organisms, which are eaten by tiny multi-cellular organisms, which are eaten in turn by larger ones...and so forth up through the mammals, which eat each other on a larger and larger scale, so you eventually have wolves killing sheep and bears killing dogs and so forth. It is only the next step from this, and the most natural, to find man killing deer and bear and muskrat, then domesticated cattle and pigs and chickens for his food. It wasn’t so very long ago that this was the only source of protein humans had, except for eggs and cow’s or goat’s milk. Killing animals wasn’t done as “sport” it was done for survival, out of necessity, for the winter’s food supply and even for winter clothing as well. No sentimentality, maybe, but no game-playing, no “killing for fun” or sportsmanship. Hunting was work and not always easy. On the other hand, the animals one killed had not been tortured or raised in crowded pens and force fed foods they naturally would never eat, plied with antibiotics lest their wretched living conditions breed disease, perhaps having their tails cut off or their wings clipped before bizarre acts of self-mutiliation occurred...
But, and it is a big but, today things are entirely different. Today cows can be raised on concrete stations in stalls so narrow they cannot turn around, and fed corn most of their lives, even though grass, not corn, is their natural food. Corn causes bloat, which could kill them, were they not slaughtered beforehand by reaching the desired weight younger than their ancestors ever did. Roly-poly muscled and marbly with fat, the meat is just the way Americans have been ad-dicted to like their beef. Literally, we’ve been taught by the advertisements that grain or corn-fed beef, which is by definition marbled, is the “best” beef and therefore, none but the best for America!
The same story or a similar one for chickens and pigs, but perhaps saddest for the pigs, because it is said they know more about what is going on and have “feelings about their future.”
How I wish I lived near Polyface Farms in Virginia (or wherever it is) Joel Salatin’s place, where every animal is grass-dependent and home-raised and hand-slaughtered “transparently,” so much so that you can come watch your own chicken be turned into chicken parts, if you so desire. It would be quite a lesson to watch a chicken you picked out running around in the barn or yard, look you in the eye as its throat was slit and you could see that it wasn’t suffering, wasn’t being tortured and hadn’t lived and died a horrible death. It would make you honor that chicken as you ate it, if nothing else. I would love to buy my protein from a local farm that practiced sustainable and humane “grass” farming but alas, I don’t live near any that I know of and Salatin has a No Delivery policy, believing it wrong to spend fossil fuel to ship food all across the land when it can be sold right next door.
So, what to do? I already eat eggs and use milk and soy products, but soy only goes so far when going out to eat with Joe or cooking for two. I have been eating sliced turkey, the least meaty of the meats I can find... a poor way not to deal with it yet, by dealing with it poorly. As I said, I’m not against meat eating on principle, only on the practice as it is done these days. I do not like meat much, true, and could do without. But for quick and easy protein there is nothing like it, I suppose. I’m on the fence. I think, as the Inuit used to think, that we -- every creature -- are all food, all souls, and that we should give thanks both for what we eat and for when we give ourselves to be eaten in the natural cycle of things. Unless we could do this ourselves, though, it behooves us not to expect it of other animals unless we treat them humanely and with dignity and respect as inhabitants of the same earth we all share.
Yaya has asked how she can better manage her time, when she has so many interests and so little time. I had a similar problem, have had ever since I started taking the atypical antipsychotics: I feel overwhelmed by the great many things I want to do, the multiplicity of interests I have and the projects I want to have underway. The projects I get started on in enormous enthusiasm are often interrupted by something, sometimes just by the end of the day, and then I have trouble getting back to finish them later, because some other project half-finished has taken my attention.
I usually read several books at one time, skipping between them as my interest in one flags and I pick up another, then another. I do the same with magazines, though often l’ll read those through in one sitting, if I can. But of course, I don’t take just one or two magazines, no, I have to subscribe to 6 or 8 or more, which then accumulate underfoot month by month, since I cannot read them all in time for the next month’s issue, and naturally I don’t do housekeeping the way I should, because then I’d not know what magazines were unread, and if I don’t see them out on the floor, I won’t know where they are! (See, there is a good excuse for almost every bad habit, you just have to be inventive.)
For instance, though I am not the capital K, Knitter that Yaya is, I have my “knitting project,” started maybe ten years ago. I used to knit all the time, because it focused my mind and helped me listen better and I loved doing it. I would knit during classes or concerts or even while having a conversation with others, because it helped me pay attention. Doing so, I made many a sweater, and slipper sock and mitten pair. So when, ten years ago, I decided to return to my knitting ways and make another sweater, it wasn’t so outlandish an idea. I hadn’t stopped knitting all that long before and still had my patterns and needles and skills, a mite rusty perhaps, but I could relearn what I’d forgotten. So I purchased some lovely new wool and everything else I needed, and wound the first skein into a ball and got the stitches onto a round needle...then conked out. I was taking Zyprexa at the time and was very easily fatigued, so enthusiastic or not, I fell asleep in the middle of starting my project. The next morning, well, I probably had a doctor’s appointment or something else pressing that had to be done, or I got distracted by the newest Nation magazine that came in the mail, or a documentary on PBS that I’d taped, or something else that caught my fancy, and the knitting stayed where it was, in my basket for the next day, and the next day and the next...
The knitting never did get done, but I eventually made Dolly the Llama, my papier mache animal that took me a year to finish and I grew plants from seeds out of the foods I ate for supper (after dinner gardening – currently Lychees and Kumquats) and I made stationary from dried and pressed wildflowers and decorative cardboard and paper boxes with handmade marbled papers, and on and on it went. But there comes a time when you have to draw the line and say, Whoa! I’m too scattered. I’m doing a little of this and a little of that, but I’m not really getting anything done that satisfies me. That’s when you must prioritize and decide what to keep, what to toss, just as you do when clutter-cleaning a room. (Yes, I watch Home and Garden TV, I know how to clear out the clutter!) You cannot do everything, not unless you are superwoman, and even superwoman would probably do a half-baked job if she did absolutely everything. So I tried to decide what I most wanted to leave behind, were I to die in a year. (There’s a very helpful book that helps one get one’s true priorities straight, called, A YEAR TO LIVE, by Stephen Levine).
I knew that I needed to keep writing, that I needed to focus on that first and foremost, and that my energies had to be reserved for that above all. EVERYTHING else was secondary. But it wasn’t enough only to write. I needed to feed myself experiences so that I had material to write about. How better to do that when my life was so impoverished but by reading? So reading was the next priority, right up there in importance with writing. After that, the decisions – note that “decide” comes from the Latin word caedo, caedere, meaning “to kill,” as in homicide, patricide etc, so to de-cide is to kill an option, a choice – the cuttings-away were easier: I could not see how to fit knitting in there, unless I did it while talking with Joe. But that required an investment of time and money I did not think I had whatever-it-took to make. So I decided against knitting (not necessarily forever but for the time being). Ditto for most involved crafts, because I had neither the space nor the materials, not to mention the time. I left open the option to make more large papier mache animals, should I find an open space available someday where I had the opportunity to make them. I still think I would find that therapeutic and relaxing and would find it worthwhile.
But you think that “writing” is a narrow enough option? What about the many kinds of writing? Can I limit myself there? Or do I want to try playwriting? Scriptwriting? Ad-writing? Copy-editing? New Journalism, old journalism, formal poetry, free verse, short stories, novels, creative non-fiction, scholarly non-fiction, popular non-fiction...Even in writing, that “narrow” field, the options metastasize and decision-making has to go on continuously.
You see how it goes? I want to be a master of one trade, rather than a jack of all. Some are lucky and can be masters of many trades. Some can make up a list and do a small amount of many things each day and eventually finish them all. I do not have that capacity or that stamina. So I have to settle for prioritizing and choosing the one or two directions I will take down the path of my life. Otherwise, I will simply be scattered and get nothing done and at the end of the day go to bed dissatisfied and unfed. That is not the way I want to live or feel; I want to feel like each day has been worthwhile, that I have done something to make the day a good one, or the best it could have been. If this means I have to limit myself to two or three choices, so be it. Better that than the emptiness of feeling like I’ve frittered away the day, doing a bit of this and a bit of that, but in the end just wasted my time, accomplishing nothing.
Work or school, some of us with schizophrenia can do one, and some the other. Some, of course, can't manage either, though a lucky few can succeed at both. Plus, these may apply differently to any one of us at different times in our lives. I don’t know why. I tend to think that people do the best they can, and that they don’t generally “fail” out of neglect or laziness. I know I ran to medical school for safety, because it was a refuge: I was pretty sure I could do school, or at least get through it. I knew in my gut and soul that I could not "do" work, could not get through, could not manage it and was desperate to conceal that for as long as possible.
I had always managed school, and done so more, and less, successfully. I got my share of A’s but also had collected worse grades than A too, though no one around me seems to want to believe that. Frankly I don’t know how I managed to graduate at all, much less magna cum laude and phi beta kappa as I don’t think my grades were anywhere near good enough over all (mostly though they were credit /no credit plus comments). I only took 3.5 courses a semester and graduated with a grand total of 27 courses under my belt when the absolute minimum was 28. But there you have it. Perhaps enough of the professors who said I was “brilliant” overrode those in whose courses I merely plodded? I never was any good in, say, physics or math for example and it showed.
Work was another story altogether. Only once in my life did I have a technically full-time job, and even then it was truncated to 6 hours a day by my working hard and fast: as a chambermaid in a hotel, your task was to clean 14 rooms a day, and if you did it in 6 hours instead of 8 you could go home early. Needless to say, I tried to make that my goal every day. Since it was a union shop, there was much solidarity between the other workers, and I didn’t make many friends among those who didn’t want me to set too good an example and make them have to work just as hard. I can see their point. They were there for life, I was simply there until I went to college. They wanted the chance to work leisurely; I just wanted to get out of there early each day. I was a teenager with a teen's energy; they were middle-aged; and so forth.
Other jobs were much less successful: pushing stretchers and wheelchairs at a hospital, after 5 months inpatient during my first hospitalization. That was part-time and agonizingly painful, both because of the people I worked with — I was desperately shy and unable to connect — and because I was starving myself and hungry and exhausted all the time. I weighed 82 pounds, my heart rate was 50 and bp was 80/50. The doctor in charge of employees almost wouldn’t let me work, but instead simply noted this and said Okay. I frankly dunno how I survived it, but some days I’d even ride my bike 6 miles there and back as well. After college I worked for a while hand-binding books and making paper and cardboard craft items for Bookcraft in Hamden Ct. Great skills but I didn’t last very long after the summer because my stamina didn’t permit me to be with people longer than 2-3 hours a day, and eventually it was 2-3 hours a week. But I learned so much from the woman who owned the place. She really took to me and taught me more than she taught anyone there. I have renewed my friendship with her daughter, who came up to me after our very first speaking engagement and who has taken the business and wants to start it up again. Some day, it would be fun to relearn my skills and help her build up some stock.
I did once “teach school” -- hired as a teaching fellow on a pittance, but dropped into the teacher’s slot because the original teacher got sick the second week of the year. Did a terrible job the first semester. Who knew what a lesson plan was? Never did learn...But by the second semester I was teaching things I knew I knew, so it went better: high school biology, field botany, recorder lessons. Still, this was only 6 hours a week, and I dreaded every minute of it. Never went to faculty meetings or lunch...too paranoid and afraid of other people. Hid away in music room to eat lunch or read when not teaching my class...Never knew anything about the school or school policies other than my classes. Made some big mistakes because of it.
My final job came after the hospitalization that ended med school. Once I was discharged, I was told I could return in a year, and I thought I would do so, but needed a job to support myself in the interim. Looking in the paper, I found a shipping and handling job 4 hours a day in a bookstore, thought I could do that at least. But then the employer wanted me to work the cash register and be a clerk out in the store, which I had not signed up for. I was terrified. Too paranoid even to begin to learn how to work the register, I begged her to let me go on doing S&H as I’d been hired to do, but she got angry and started insulting me in front of customers -- with a Brown degree you can't use a cash register?!-- and finally fired me then and there. I left in tears and never worked again.
That’s when I finally decided, after applying for city welfare, and being told I had to go the disability route, that the least I could do was dedicate myself to the one skill I did have, and the one thing I had always loved: writing. I was 27 or so then. I figured it would take me ten years to really learn my craft, and perhaps I could get things published along the way. But I’d have to devote every waking minute to writing, writing, writing. So that’s what I set out to do: to make myself into the best writer I could. I did do other things as I realized I needed some experiences to write about; I practiced classical guiter, took walks to identify wildflowers, read when I could, which wasn’t often, and did my best to get out a little. Still, my main focus was on writing, and I wrote every day, something, even if it was just a long letter to someone I’d never met but had become friendly with by mail (this was long before computers had entered people’s lives).
It paid off. By 1984, I'd been awakened to poetry, and had a new interest to learn and teach myself to write, one that suited "where I was" because of my short attention span and lack of ability to concentrate on longer pieces of writing. Over the years I took, desultorily, a few writing "courses" but few truly helped me, because they largely consisted of assignments to simply write something, and then accept critique from the class of students, who were just learning to write themselves. I never found this to be all that useful in a general way, though it might have helped me craft a better specific poem.
Even school, taking courses, began to become more and more difficult as the years passed, until in the 1990's I took a graduate level poetry course at Trinity College during a med change and while only auditing, I "lost" most of it, could do almost none of the reading, could barely write the required assignments. When I took a Spanish course at the Community College, "remedial" in the sense that I used to be fluent both in speaking and writing, I had to withdraw before the course was finished. So now I don't even take classes any longer, but only study things on my own, or discuss what I can with others one to one. And I keep writing. I keep writing though it all.
So I do not work, in the sense that I don't earn a living, and never have. And I cannot go to school; I can't handle that pressure any more. But that doesn't make me a failure. I have taught myself to write and I write every day, come flame or flood. I think the trick to success is not gauging yourself against the yardstick of how much you earn or learn, not in terms of dollars or degrees, but by how satisfied you are, how fulfilled in life you feel, how much of a contribution you can make to your family, or friends, or society or the world at large. In short, success is measured by an overall sense of well-being; if you don't feel like a failure, you cannot be a failure!
Some days are better than others, and today is not one of those. Perhaps it is because of yesterday's migraine and a hangover from that, or a slight malaise from a cold that I keep fending off. I'm not sure what is the problem. But I feel rather down tonight and was crying some, earlier, thinking about what is happening to Joe.
He went to the GP this afternoon, and was given the name of a local pulmonologist, which he told me outright he would need "at the end." He didn't mention a vent this time, or nursing homes and 24 hour care, just "at the end" as if he had given up the notion of going that other route. I didn't dare ask him what he meant, though I'm ashamed of my cowardice.
He obviously is having trouble. He still has a nasty cough from the cold he just had and is recovering from, and it is clear he can't cough up what he needs to in order to clear his throat. His voice is thick and phlegmy, as if he is talking underwater, but he can't do anything about it. The GP said his lungs were clear, however, so that is a good sign. On the other hand, no one would tell him his pulmonary function scores this afternoon, though he had every right to know what they were. He has woken up with a headache at least once, a good sign that his oxygen level is low at night.
I do not want this to happen. I do not want this to happen. I am so afraid that he will be afraid of dying when the time comes, and that would tear me to pieces. On the other hand, if anyone could see it as embarking on a new adventure, Joe is one who just might. So we'll see what happens.
I have been successfully drinking my 500 calorie shakes and once I even ate 1000 calories in a day instead of boosting my intake with the liquid supplement. Today I haven't done as well, yet, but there is still time. Yesterday, well, I can be forgiven for not meeting the goal then, because of my migraine, but every other day last week I did the best I could and gradually did reach the target of 1000 calories a day. So now I need to maintain that and see what happens. Then I can see if I can start doing more, maybe start walking a bit and getting out a little, rather than sitting all day doing nothing, to conserve my energy.
Okay, guys, help me out here. I don't like babbling on and on about what my days are like. PULEEZE, give me some ideas of what to write about, wontcha??? I'm sick of hearing myself ramble on and on about nothing! Thanks, BD
The two collages I will insert here were done in the hospital this last time, while I was on CO (constant observation). The first was assigned to me as "Make a collage out of all flowers," while the second was simply, "Now do one with only words." Thus was born Flowers with god, and Meltdown.. The two version of Meltdown are posted only to see if I could make more of it legible to you in two different shots, though they appear identical (they aren't quite.) Click on them if they are small and they should enlarge enough to be seen much better.
Today was rough, a monster migraine all day, coming after two days during which I could do nothing. On Friday my father visited me, and left me rather upset, what with all his talk about dying from cancer or heart disease in 2-5 years - "probably." I don't know what he wants me to get from this sort of communication. Does he want me to feel guilty? He KNOWS what put me in the hospital in July, the certainty that I had caused his cancer! So why is he -- in private, without anyone hearing him -- telling me now all the details about how he is not going to have chemo, and is going to die and how he has the worst cancer type and it will come back, he just knows it...on and on. Knowing all the while what I'm dealing with with Joe. It just seems a bit cruel and -- something, I dunno what. I don't know why he tells me these things! I don't understand what he wants me to get from the information! Does he think I'm not under enough stress already?!
Sorry, but it upsets me, because Joe oon the other hand remains so accepting and upbeat about everything, and never complains or dwells on the negatives of what is happening to him. He remains as grateful as ever to Zyprexa for giving him his sanity, and says that this gets him through the day in fine shape. This, even though I know his early morning headaches are due to low oxygen levels in his blood overnight (no, we still have not been called about the BiPAP breathing assist machine or the others) as well as his fatigue and frequent awakenings.
This is a short entry, I realize, but it has been a trying day, what with not being able to keep a thing down for hours and a headache that only remitted about a hour ago. So forgive, and understand that I am not relapsing into silence, just resting after an onslaught.
Like everyone else, I am waiting with bated breath to hear the rest of Kate's story...But until she finishes it, in the comments section, I will continue to add to what I wrote yesterday. But first, an update.
Dr O insisted on getting my weight when I saw her the other day, and we were both surprised to see that I had lost 5 pounds in 2 weeks, (she had weighed me -- but I hadn't looked -- two weeks before at 101) so that I was still down to 97lbs on her scale, which is if anything on the heavy side. I was also feeling faint and light-headed when I stood up and had blurred vision a lot, and was scared by all of it. At this point, I gave up all ambivalence and simply said that I needed help, and did not want to see an eating disorders specialist, did not want to focus on it that way. After all, part of the problem was that I forgot to eat, and found myself simply with no appetite most of the time...I did eat when I was hungry, I pointed out, since I ate when I took Zyprexa, even at 2 mg a day. I don't want to stop the Abilify, which may be taking away my appetite, so what to do? We finally settled on an agreement: I would make and drink a 500 calorie shake or smoothie every day, in addition to whatever I usually eat so that I was taking in at least 1000 calories a day, enough to maintain my weight. I assured her that I would gain weight on that much, but she promised me I wouldn't and that if I did she would find out why -- whether it was an endocrine or metabolic or whatever problem and see what could be done about it. Because no one should gain weight on 1000 calories a day... So with that in mind, I have been making myself shakes for the last two days. But alas, I get so full from them they cut down on what I can eat the rest of the time...So I haven't made it to 1000 cal yet, though I have doubled my intake from 350 calories to 700 a day, which is a big deal already. Tomorrow I'm going to try to drink 1/2 the shake for breakfast and 1/2 for lunch then a snack at 3 and supper at 6 with a snack at 9 and bed at 12am. That way I should be able to fit in the other 500 calories without trouble. Wish me luck, will you?
Now, then, as to the voices that are or were good. Mostly, except for the Little People, it's "were" because I haven't heard from the really good voices in many years. When I was in college, before I got truly paranoid about a pharmacist who controlled me and my mind (which made me walk around his store in a circle with a radius of 1/2 mile in order to evade his influence) I would hear passersby either say to one another, or simply think aloud as it were, "My that's a nice young woman, I'd like to invite her home to have tea with me." or "What an interesting young person. She is just like my daughter. I wonder if she'd like to meet me..." And I'd see smiles from everyone, or hear greetings and see familiarity in everyone I passed by. Not that I thought I knew them, so much as that I had this feeling that they knew me, or knew OF me, somehow, somehow, which made me feel very much less alone and comforted me.
After my first hospitalization, that same semester, when the good voices had transmogrified into evil ones and paranoia had appeared, after that and a six months stay at a psychiatric halfway house, a new person, a new voice introduced himself who would return on and off throughout the years and finally reappear for the last time in the 1990's, or at least that was the last time he came that I recall.
Brother Luke was a spiritual advisor, yet he belonged to no religion and never spoke of any god or higher power of any sort. He -- and I only say "He" because of the name "Brother Luke" but as he pointed out, I gave that name to an ambiguous voice that was neither clearly male or female, so I can't even be sure of this advisor's gender. Brother Luke, when he last appeared, used to spend many an hour talking to me about all sorts of things, from violence in the world, to various ethical matters to issues I had around my body and other more specifically personal problems, which he always related to the universe at large (come to think of it, much as Cynthia and Kate often do, in an effort to let me see my place in it, rightful but small). One crisis center MSW I used to talk with by phone, asked to see what I wrote down of our conversations -- since I took notes after a while, the advice being so amazing and helpful -- and when he did, he showed them to a minister of the church he attended who also thought Brother Luke was extraordinarily wise and insightful. So you can only imagine how helpful he was for me.
Unfortunately, though he first appeared in the early 1970's, by 1990 or so "channeling" was all the rage, and so I dared not talk of him very freely for fear of being thought one of those band-wagon-jumpers-on. I did tell one friend, but she did just that: she assigned me the role of resident friend/channeler and decided I was on a higher plane than the ordinary person. But I am not, of course, I just have schizophrenia. If my brain created Luke, just as it created the passersby and the Little People and the horrible voices, I was not aware of what went into the "wisdom" that Brother Luke imparted to me, until he did, so he might as well have been another person entirely.
I know that some of you do not agree with this assessment. That you prefer to condemn the voices as not-you and/or try to heal them as sicker than you. But this does not work for me, I don't think. I don't know what to do with voices coming from the walls where there is no radio or TV, unless it can be explained the way Dr O explains it, as my brain interpreting a nerve impulse as sound and therefore registering it as something heard when in fact nothing has come via my ears in the first place. And so forth. And others have other different ways to cope with this phenomenon. The more power to each one of us. I truly mean it when I say, whatever floats your boat and gets you to the other side is good enough "water"!
Finally, to finish off this night's post, I want to add a new poem. It is very plain and simple, no flashiness, but for some reason I like it. This one came to me almost whole; I had to do only a little to get to the final version, if indeed this stays the final version, which only time will tell. BD
Thinking to write a gift
I studied the prairie vole
Monogamous, doting parent, tender provider,
A model, literally, for human love.
If I could write of prairie vole attachment
It would be a metaphor for this couple’s devotion.
But the poem didn’t work. Voles, it turned out,
Are large mice, meadow mice they are called,
And she is phobic about the family Muridae
While he detests all rodents for what the beavers
Did to his trees. So while I still liked the analogy,
Prairie voles were out and so was my poem.
I gave up. It was nothing if not voles. (I
Still thought this was all about me.)
A year passed. I wrote other poems,
Some good, others not so. But no gifts
Because none presented themselves
As anything but too hard work. Finally
I had to do something with the voles,
They were rubbing my mind raw.
I wrote everything I knew about them
In a list on a sheet of paper
And read them to myself out loud.
So much about so tiny a creature,
All five inches of peppery fur and tail!
Surely it matters not that the solo spouse
Of a dead vole prefers to remain alone
Rather than mate again. It’s a behavior
They attribute to hormones. But
That made me think. Why hormones?
Why shouldn’t a vole experience love?
It has the same love chemistry we do:
Vasopressin, oxytocin, dopamine--
Who’s to say the widow of a prairie vole
Snatched up in the night by a voracious owl
Is not honoring his memory or remembering
Evenings spent in their moss-lined nest
Making love, then sleeping side by side?
Well, Joe just got home from the Lahey Clinic in Burlington and the verdict was not good, though it was what I expected: his pulmonary capacity is only 40% of what it should be. He now will need an assistive breathing machine - called BiPAP - at night to help him get a good night's sleep and be less fatigued during the day. It should help his stamina as well, since I think he was getting tired more easily because he wasn't sleeping well, nor as long as he needs. It should also help his nightmares and middle of the night awakenings, which I think were because he was in a more superficial state of sleep (REM) more often (due to lack of oxygen), rather than getting deep restful delta sleep. I had a suspicion of all this before he went to Lahey, but figured it would be better for him to hear it from the experts than as speculation from me. I wish to god I had been wrong...
Now we need to find out how to go about getting not only the BiPAP machine, but a suction machine for his saliva, which he finds hard to swallow, and a cough-assist machine to help him cough up what is deeper in his chest than his diaphragm can bring up on its own. Plus, we've been told that he needs a feeding tube put in soon, or he may reach a stage of respiratory decline where it will be too late, too dangerous to put one in. Joe wants to go the tracheostomy/ventilator route so a feeding tube is imperative. His tongue is going, as is his speech, and without a functioning tongue he won't be able to swallow even if he is still able to breathe at that point.
This is really scary, because respiratory function, and the diaphragm muscles, are supposed to go late in the illness, not so early. For Joe, it is among the first muscles to fail. Except for Joe's tongue, this is his only other noticeable symptom; his arm and hand, leg and foot strength are all really quite good. No wonder he wants the vent. Life is too good right now, what with Zyprexa and his well-functioning body and brain, for him to want to toss in the towel. That may change as he becomes more debilitated, but I can appreciate where he is coming from right now. It is so hard to think of this good-natured, optimistic, ever cheerful and attentive man dying now, in the best years of his life, and while he has every other capacity still intact but his breathing. If I were he, I'd want a vent too, no matter how many people with ALS opt against it.
Have I talked about the "little people" or the music in a while? I don't think so, so a bit of an update. I no longer hear threatening voices, or voices that talk about me or that comment on my activities in a nasty way etc. You all know the sort I mean. At least, I haven't heard any in the past 2 weeks. But what I do hear, constantly and almost without a break, is music -- either women singing in a chorus, something unknown but sweet-sounding, or a mixed choir singing something more complicated and classical but again new to me, or once in a while the singer I call Old Man River, because he sounds like the guy who sings that song, a deep, weary, sad voice singing about some injustice. Sometimes, though, it is just a piano playing a simple tune over and over and over. As long as I don't recognize these pieces - sung or played - they stay in the background as "white noise" and no longer bother me. I'm completely used to it by now. It's only when the music is familiar and repeats like a broken record, but with mistakes or variations, or weird and sinister changes that I pay attention and get distracted by it. Then it is rather like the tune that gets stuck in your head that you can't get rid of, that annoying and distracting, with the one difference, that I actually hear it outside my head.
The Little People are different, as you may recall from a previous discussion of them. I find them amusing, not bemusing or disturbing, though my telepathic communication with them, when I discover that I'm doing it, is rather disconcerting. They inhabit various personal items, like my hairbrush or eyeglasses, or even the scotch tape dispenser or my own hair. Perhaps I should say, rather, they are those things, though I think of them as different from the substance they are in. In any event, these "little people", or the substances, say the tape dispenser, might suddenly say to me, "I don't think I'm feeling very sticky today. Use another roll of tape." And I would answer, "Oh, come off it, I used you yesterday and you stuck just fine." The tape dispenser then might sniff. "Well, just because you're stuck up doesn't mean I'm sticky!" Then I would probably tell it to just shut up and let me get on with doing whatever I have to do. That sort of thing happens all the time. So much so that I hardly notice that we're doing anything unusual.
Just the other day when I was cooking homemade TV dinners for Joe, the freezer containers for them started talking, first to themselves and then to me. I've forgotten what the subject was exactly, except that they were bickering about which one got more noodles than the other five. I had to go over them and make sure all portions were exactly equal just to quiet them down. Even then there was grumbling, especially when I put the meatballs and wine sauce over them. Boy, you never heard such complaining about who got four and who got only three meatballs! But it would have most bizarre of all, should anyone have come in and seen us, conversing away...
Except of course, they would have seen nothing unusual, would have known nothing about what was going on, but that I was being very careful to make each portion the same. Because, as I realize now, the containers weren't actually talking and neither in fact was I. The whole thing was a creation of my brain. In truth none of it actually happened, I just believed it did, and experienced it as if it happened. But as I learned recently and painfully: what I experience and what is real are often two very different animals.
But in general, these "little people" experiences assume their proper proportions and stay where they belong: in the realm of pleasantly bizarre gifts that having schizophrenia may have bestowed as compensation for the horrible parts of the illness. I generally recognize afterwards that they were not real, or at least that they were the "little people" again, and that my brain created them for my entertainment. They have never done me harm nor caused me anguish. The worst they've ever done, while inhabiting the laminating paper -- their first incarnation in recent years -- was to use their powers to give me lousy titles for my collages (because only the laminating paper had that power - don't ask me why).
As you may recall, I have seen these Little People at times too, quite vividly, coming down an invisible line from right to left, almost the way a backwards comic strip might, except that this is more like a movie than a comic strip. The action unfolds as the activity proceeds, coming closer and closer to me, as if time and the action are one and the same and are flowing together to meet me in the present, where I am to assume the "story" actually starts. But in fact, where the story starts is where the Little People cease...because I don't know the future and neither do they, so I can't watch them further, except to observe them in the present, and for some reason that is not possible.
If all this seems supremely weird, it is. But those are the Rules and I only know that they go by these Rules or cannot appear at all. I dunno. Maybe it is all too weird. Has anyone else had experiences like these? Do any of your voices amuse or flatter you? Do you like any of them? Are there any you miss? If you have any, tell us some of your stories about more positive or lighter aspects of your illness.
This poem is based on a real accident, though one I read about, not one I was actually in.
Articles of Faith
Black ice. An accident’s chain-
reaction like toppled dominoes,
and you steer into a skid
on the frictionless slick
missing, by the merest sleet needle,
a chrome-crumpler 28 cars long. It’s night,
your face glows dashboard green
touched with gold as we pass
streetlights in review.
Someone up there
must be watching out
for us, you say, meaning you,
me, and this carcass of a 1989 Chevy,
in ‘06 still too good to let go.
But it is something more than
mischief in me when I remind you
of the 28 drivers whose cars accordioned
in the whiplash of impact.
Was the big guy upstairs
not watching out for them, then,
or worse, deliberate in his neglect?
But this is not a theological poem,
it is only a prayer whistled
devil-may-care into the void
by a nonbeliever who knows nothing
is guaranteed save that none of us
will survive our lives. The pile-up
behind us, we’re wowed breathless
by the nearness of our miss
and though there’s still
the matter of those hapless 28,
I, too, whisper Thank God!
to still my trembling hands.
NOTE: I believe that I have true anorexia, which is defined as 'lack of appetite." It is "Anorexia nervosa," shortened in this posting to "anorexia," a psychiatric disorder, which is my subject tonight. I did suffer from anorexia (psychiatric) for 20 years in my very much younger years, so I know whereof I speak. Whether I "have it" now is something to be determined, though I frankly do not think so.
Many papers have been written and clinicians have discussed the illness called Anorexia nervosa over the years. My father, a physician himself, would sometimes see a young woman with anorexia in his practice of gastroenterology, and used to talk about anorexic young women as having “a love affair with the feeding tube.” In point of fact, all of those I met in the hospital the first time lived in stark horror of not gaining the required quarter of a pound a day and being tubefed as punishment. (And it was punishment, mark my words, there was no doubt in anyone’s mind on that unit but that tube feedings were intended as disciplinary measures). But “love affairs”-- that was how he and the shrinks talked of it, and thought worse, no doubt. Can you imagine what sort of mind sees these young women crying and protesting not to have a tube shoved down their noses and be forcibly fed Sustacal (in those days) poured too fast into their stomachs, and calls it a “love affair”?! It’s the same sort of mind that talks of manipulation by the young woman who doesn’t gain weight when she “ought to” in therapy. Why else would she be in therapy, but to gain weight, right? Buzzer - WRONG! These young women are in therapy 1) because their parents forced them to come, or 2) they came willingly because they are in pain, and maybe they wish they could eat normally, but usually they want to do so without gaining weight and when they start to gain, the panic sets in and the gain stops and perhaps even more is lost.
But they will tell you that themselves, and do, over and over: “I don’t want to gain weight!” How much more clear can they be? No one with anorexia would ever say, and still be anorexic, “I want to gain weight.” It’s a contradiction in terms. As soon as you want to gain weight, you are by definition no longer anorexic, not in the psychiatric sense. So they are asking these young women to somehow go to therapy for anorexia and NOT be anorexic. Then they call them manipulative and deceptive when they prove themselves anorexic after all, and do not want to gain weight, just as they have always protested.
They DO want to be out of pain, however, pain that has nothing to do with eating, food, or thinness, so they continue in therapy, not necessarily connecting it to having to want to gain weight. Why should they? Most people in therapy don’t have to want to gain weight as a prerequisite for entering therapy, all they have to do is be in pain and want to find a way out. So naturally, these young women think that this is all that is required of them too. They don’t know the therapist’s agenda is that they have agreed to gain weight, and to want to, by the very act of coming to see him or her!
So in short, I think all of it is bogus, and cruelty unalloyed. Any researcher or paper-writer who thinks these young women are manipulative and deceptive has never known what it’s like to starve yourself or the pain self-inflicted for the sake of thinness (ie to be like a model, that is to say, to be acceptable, to be good enough) and what’s more, doesn’t give a damn either. His ego has most likely been injured by an obstreperous anorexic young woman who “refused to succeed in therapy” that is, to gain weight in the time he allowed for it. Because of his ego-injury he is getting revenge by using his influence to describe all young women with anorexia as deceptive and manipulative and in love with the feeding tube. He may get his papers published and his name on some common symptom, but that still won’t make him correct. It just makes him what he is: an a—h—!
What about my own worry, that if the focus is on my weight that I’d never gain and might even lose more? Well, for me, this would be because the weighing made me too aware of the numbers, and it’s the numbers that I’m obsessed with, not being thin per se. I know I’m thin. I even know I am too thin. But the numbers tell me when I disappear into the woodwork “enough.” So if the number is focused on, I will focus on the number too, and in a way that I should not. I don’t want to know my weight in fact, because then I have to think about whether it is visible or invisible enough.
For younger women, those who claim to want to be as thin as the models they see on TV and so forth? Well, I think in some sense it is the therapist’s fault here too. I believe that these young women DO want to eat but the therapist’s focus on the weight and weighing them, and telling them how much better they are when they gain, only leads to failure. Why? Because INSIDE, even as they are gaining weight, they feel horrible. It is so crazy-making – telling someone they are better, when they feel so much worse – it’s enough to make someone commit suicide and I venture to say it probably has. Is it any wonder someone with anorexia might try to stay as thin as possible, her body reflecting her pain? This is not dishonesty, this is not manipulation, this is desperation and too many articles have been written by NON-sufferers who do not understand and are so very quick to label FEMALE anorexic patients “manipulative” while they would simply call a similar MALE patient “disturbed.”
I see this all the time. Females, to take another example using personality disorders, are labelled as Borderline; Males are called Antisocial. The behavior and symptoms are actually the same. But Borderline means the therapist finds the female a pain in the neck while Antisocial means they are afraid of the guy...Nothing more and NOTHING LESS. The difference is that they take the male seriously. As usual. The female is just dumped in the wastebasket.
But back to anorexia. Many have suggested that it stems from some painful memory or trauma from the past. It may or may not, but if it does, I’m pretty sure mine stemmed from this whole “bigger stronger twin” business, the way I was treated as if my feelings and needs were unimportant and that if I showed any I was merely “acting”, ie “Miss Sarah Bernhardt.” I don’t doubt this for a second as having deeply affected me, the relative lack of love and affection it led to, and my response, to become the stoic they said I was, which only produced less response from them in terms of love and affection, because I myself showed little.
The one time I did, hugging my mother each time she left to go out with my father in 7th grade, he told me I was too old for that kind of nonsense and to stop it at once! Naturally, I did. If Lynnie had needed to do that, well, I know the response would have been different. I still resent them today for the “Sarah Bernhardt” thing, because it haunts me almost every minute, causing extreme self-doubt in all that I do or think. Every medical test I take I expect to be told I’m just play-acting, that nothing is wrong, because that is what they said about every feeling I evinced, even when I was sick. But here’s the rub: If anorexia (that is, should my eating/weight problem meet those criteria, and I have some doubts that it does) is related to something in the past, how come knowing doesn’t solve the problem? Obviously something is wrong with the theory. But what I cannot say.
I guess I'm on a roll, though I dunno about the quality of the poems I'm writing these days. Nevertheless, it feels good to be doing something I always loved and have not had the motivation or --something-- to do for a long while (except for the recent rewrite of "Beggar at the Feast"). I think I was brought face to face with how long it's been by an interviewer who asked me precisely that last Friday...and I had to think, When did I last write a poem I was proud of? Anyhow, I had to answer, Several months, which struck me as terrible, that I had neglected it for so long. No more. You may get sick of me posting poems here, though I hope not. On the other hand, perhaps I won't post every one I write, since some literary mags consider that to be "previous publication" and won't accept poems that have been on the Internet. I believe that may apply only to formal poetry sites that actually e-publish on-line poetry, not my little blog, but I ought to find out. Anyhow, the following poem is once again drawn from experience (recent) but you should understand that I no longer feel as I did. NOTE: the line "doesn't speak for days/But on paper" means except on paper, that's the kind of but I mean.
ADMISSION: PSYCH WARD, 3rd FLOOR
In again, she wraps herself in zombie weeds
Can’t, won’t, doesn’t speak for days
But on paper, with a thumb of a pencil
They will not sharpen
For fear she might “do
What she writes is this: I’m sorry--
I told him I was poison--
No one ever listens--
They listen now, don’t they,
Everywhere, her name, even on TV
Talk of her, conspiracy...
She’s a clarinet off-key,
Shrieking without words or tune
With consequences like a core
they are so inevitable:
You must not shriek on The Third Floor.
Eating half a shadow’s food,
She fears she could die inside
These walls, growing cold, cell by cell.
Someday there may be nothing left alive,
The furnace of her heart as shuttered
As brain, bowels, bones.
All life is water and so at last she will flow
Out of her warmthless skin,
Sense the change and swim
Towards the Sea,
I was inspired last night, by the word "flea" which I came across in a book somewhere. It just popped out at me, and this poem was born. It is, by the way, an almost entirely true story. What is or might not be true is the exact age of the sweaters, which could well be older than 50. The tags that were still on the garments gave the price. The question is, when did a fine cashmere sweater originally cost $16-18 when new? Does anyone know? Anyhow, it's all a big metaphor in any event...But the last two words are meant to be ambiguous, keep that in mind. Who or what do they refer to?
Oh, by the way, people, LISTEN: I made the same mistake everyone does. I mixed up metaphor and simile! So this is a correction: A simile uses like or as and a metaphor does NOT. Remember aS = Simile whereas there is no "as" or "like" in metaphor. Damn! I swore I would get those straight and I went ahead and forgot to check up on myself. Oh well, as I've said before and will likely have to say again, or eat crow, Even Homer nods. (Not that I'm Homer, mind you. But I like the expression for its bombastic grandiosity.) I repeat: "Your similes are like gourmet meals to me" = a simile. But "Metaphors are the three squares a day of poetry" = a metaphor. Got it? I hope I finally do. Forthwith, the poem:
Homemaker turned friend, on a Saturday
Mid-spring, sprang me from my apartment
And we were off to the flea for the bargains.
Jo headed for the “new stuff,” all oil-based
Fabrics in cut-rate, designer knock-offs
While I cast my eyes over what had aged
Into sepia, rounded or paintless with love and use,
Hoping for antiques on sale by the unwitting, fair
For not knowing priceless from worthless myself
Except in the matter of three women’s sweaters,
New --tags still on -- in navy, ash and sand
Under a sign that read: CLASSIC CASHMERE $5.
Why cashmere sweaters at that price
Still unsold if there wasn’t a mortal catch?
Was made in the 1950s in 2006 too mortal for me?
Well, were there holes? were they coming apart
At the seams? was the style dowdy or old-fashioned?
Taking last first, he pattered: Classic
Means classic; you could wear these any year
And never look out of place. Test them yourself. Pull
At them. They won’t even stretch, those seams.
And no holes. Okay, you found a tiny one
In the sand-colored arm? It can be repaired.
You see, pristine condition, almost. And only $5 each.
I tell you, it offended me how flea-goers shunned
1950s cashmere, so valued and precious
When new a sweater might cost hundreds of dollars
Yet 50 years old, like many of us, in almost
But not quite, pristine condition, no one wanted
Those gals, not even at flea market prices.
I fell for the sweaters, bought all of them --
Navy and ash pullovers, the sand-colored cardigan
And brought them home. Now that we survived
The steams and storms of peach season, it’s all apples
Finally. I need a sweater mornings, comfort
in cashmere, 50-something, same as I, a classic.
Yaya kindly suggested, when I asked her: "maybe you can write about how you take care of yourself. What is it that you use to self-soothe. What is helpful for an advocate to do and what is not helpful." Okay, Yaya, thanks! I think I will take those questions as my subject tonight.
First though, a bit of an update from yesterday: Joe now tells me he cannot cough at all, which really scares me, and he showed me what happens when he tries to -- no cough comes out but a little sputter. This does not bode well, according to everything I've read since last evening. It seems that there is a machine, called a coflator, that will take care of the secretions in his throat, to make him more comfortable, but the fact that he can no longer cough does suggest that his respiratory muscles are involved.
He doesn't seem to understand this, though, and maybe that's for the best at the moment. When I asked him about the "weakness, er, fatigue" and how he was feeling, he said, that he thought it was due to the pills he had to take, which for the most part are the same ones as he has always taken, plus an antibiotic and one for ALS...No, I believe his "fatigue" is due to overall weakness, perhaps because of more breathing difficulties than he knows about, or perhaps because he lacks more muscle strength than he is aware of. One or the other. But I didn't say that, because I figure if he is in denial, it must be for a reason and I shouldn't deny him the right not to know what he doesn't want to. I mostly just said, "Well, Joe, you're right, it could be the pills, or maybe you're doing too much. You could be tired for any number of reasons." And left it at that. After all, the Lahey Clinic will let him know where things stand soon enough...
As for me, well, I sent my post and Paula's comment, which was so incredibly insightful, to Dr O, asking her about it, and she said it was right on, and exactly what she had been trying to tell me, how when chaos and fear have taken over my life, I run to the things I can control -- she named three things, among them eating and eye contact. She also was interested in Paula's statement that I needed "professional help" in that she is not an eating disorders expert and wanted me to have a consult at a local center that specializes in such problems...But to that I said an emphatic NO. Because that would focus too much on it, which would only make it worse. I need the whole thing to stay in the background or it will take over my life, and I do not want that.
Now then, to Yaya's Q's:
1) How do I take care of myself? Hmmm. I have a lot of help, for one. And for another, I guess, I shirk a lot of daily tasks that others take for granted. If I confess them honestly, you must not judge me, okay? First of all, there is personal hygiene, often a problem for those of us with SZ. I have solved that dilemma in the only way I know how: I don't bathe or shower until I smell, which means once every three weeks or so. I don't brush my teeth, I mostly use a gum stimulator that I can keep by my recliner and use when I think about it, rather than brushing at a set time of day. That frankly is too hard to remember or do. I tried to remind myself to do it, by setting up an alarm on my computer with a reminder attached, but I never once paid any attention to it, just got annoyed with it and switched it off, without actually going to brush my teeth when it said to. So much for reminders! I do wash my hair, in the sink, once every three days, because I don't want people to know that I don't bathe; it's a trick, but it works; no one has guessed my secret -- I've told them outright or not at all. I also sleep in my clothes, so I don't have to change the next day, or the day after that. Unless I am going out and my clothes are too wrinkled for public consumption: I have a horror of being conspicuous, as you know, and so I do try to look unnoticeable. I can wear the same clothes for a week without changing anything, though I do try to wear clean clothes to my appointments with Dr O, or at least not too dirty ones.
House-keeping I get help with once every 2 weeks, so I don't have to do too much but keep up with the mess in between visits. I do wash my dishes eventually, and I'll occasionally pick up the books and papers strewn around, but on the day that the woman who helps me clean comes, we both pitch in to do battle...usually. So I guess you could say I do some of my housecleaning, unless I'm feeling too too weak or tired. She always tells me not to do anything, but I don't like someone doing it all for me, so I want to do part of it myself, hard as it is to get motivated.
As you know, I will cook, upon occasion, for Joe, though rarely for myself. And as to eating, you're aware of that struggle. I rarely drive, and when I do it is to go only 3 miles or less. I can't drive long distances without falling asleep at the wheel, one, and two, I'm scared to go anywhere on the highway, though I want to learn. If I could only get up the nerve to ask Joe to come with me and navigate! Meanwhile, Joe drives me places I can't get to on my own while he can, and in the future -- whenever that may be -- I have a driver arranged for the hour-long trip to see Dr O. For other medical appointments, though, ones that are in the local area, Medicaid provides livery taxis at no cost, so long as you call 2 days in advance. We also have a Shopping Bus that goes to two different stores on two different days from our building (for low income elderly and disabled people). If worse came to worse, I could always hop on board that, though one store is close enough to easily walk to, even pushing a shopping cart. Transportation, though, is the biggest problem to overcome here. If I didn't drive at all, or had no car, I'd have to rely on the bus, which I am scared to take! The local bus doesn't even take the main street through town, where the businesses are...So you have to walk a couple of miles no matter where you get off, to get to any of them. So I need to learn to drive a little less fearfully, and for somewhat longer distances. It's a matter of being independent, which will be crucial one day. And Joe may need ME to drive him someday. I want to be able to rise to that challenge.
How else do I care or not care for myself? Well, I do not have to worry about my medications. The visiting nurses do that, which is a huge burden off my shoulders. They fill all the prescriptions and take care of refills and calling the doctor when I need more and they fill up my daily pill boxes and oversee my taking them morning and evening. All the meds are kept locked in a Sentry box, so though they are left in my apartment, I couldn't take anything extra or overdose, even if I were so inclined, which I never am. The same agency that sends the nurses also provides, upon orders from the doctor, a nutritionist and occupational therapist, both of whom I've seen at various times. The nutritionist is to come again in fact, though what she can tell me that I don't already know, I'm not sure.
One thing I want to do, when I have more energy, is get some exercise, which would make me feel a lot better than living this sedentary life I do now. My bones need some walking and so do my spirits. But at the moment, I am too weak and tired to do much of anything.
Self-care is an on-going struggle for most of us with this illness, and we manage it with more or less difficulty depending on our general level of functioning and our state of mind overall. I personally find the whole business very trying, though I manage to fake it well enough that people are not always aware of my troubles with it. Since "passing" seems to be adequate, I guess I'm doing enough to get by!
2) How do I self-soothe? Mostly by writing, writing, writing. I'll write in my notebook the things I canot say elsewhere, or in my blog when I want to talk to people and there is no one to call...I'll write poetry or essays when I'm feeling creative (though that is not soothing, too much pressure involved) and I'll write e-mails when a good friend writes me a long delicious letter and I actually have time to write back at length (rare these days). I dunno how else to "self-soothe." I love folk music, and country/western and international folk music, but for a long time I have not listened to music at all, finding myself too impatient to relax. I used to watch Home and Garden TV, finding the design shows and the Do-it-yourself programs a relaxing break in my day. But no more. Sometimes, I will simply lie down and take a nap, which is at least relief from "it all." I can usually sleep for a couple of hours. But I guess, short of writing, I don't know what self-soothing is all about, nor how to do it if I did. Maybe that's why I get so many headaches that linger for days?
3) What should advocates do or not do? Argh, that needs an entry for itself alone, so I will pass on it here and try to devote a post to the subject at a later date. If anyone has anything they want me to include in my discussion, please let me know in the comments section. What helped you when you were actively ill? What did a helper or caregiver do that didn't help? What helps now and what doesn't?
I spent the morning and early afternoon cooking homemade TV dinners to freeze for Joe so he'd have decent meals to eat when he didn't want to go out to eat (he does that a lot these days) or Karen, another friend, was unavailable to accompany him and he decided to stay in. I really hate to see him eat store bought TV dinners, full of chemicals and preservatives and who knows what else. Plus, he eats Lean Cuisine, which isn't anywhere near enough calories for a 5'11" guy who needs to maintain his weight, not lose.
I don't know how mothers do it for a family of say, six, since I made six servings exactly, no seconds available, and this purely by accident. But to make meatballs merlot (meatballs are easier for Joe to chew and swallow than unground beef) over noodles and honey-ginger glazed carrots took me 5 hours. I suppose I could whittle that time down with practice, but to have to cook every dinner 7 days a week and be creative? Well, I must say I have a brand new appreciation for my mother, who did that and also went to college and later on taught school.
Anyhow, while I made the dinners Joe came up to open the wine for me since I've never used a corkscrew and he sat down a while to watch as I cooked. He said he had been feeling exhausted these last few days, even though he had done a lot.
"Because you did a lot?" I asked. But he was lost in thought and didn't respond.
I tried again. "What have you been doing today? I haven't heard a peep from you."
"I've just been sitting in my recliner, or sleeping. I can't get enough rest. I'm too tired and--"
I waited, as he seemed ready to go on. But he said nothing so I prompted him. "Tired and?"
"Well, I've been wondering about a suction machine, you know, because I can't cough up this stuff in the back of my throat. My coughs aren't strong enough anymore"
My heart dove into the pocket of my stomach and trembled. My coughs aren't strong enough. I knew all about the suction machine to vacuum secretions out, I'd seen them when I worked as a transportation aide in a hospital when I was young. They had always scared me, especially their noise. But the statement My coughs aren't strong enough scared me even more. You need to push out a lot of air to cough, to raise your diaphragm high and fast in order to make the explosion of air that sounds the way a cough does. It's voluntary, even when it feels like it isn't. You choose to cough when your body is in distress and your brain sends a signal telling you that a cough is needed. But what if you can't raise your diaphragm quickly or high enough? You can't cough, or not effectively. That is what seems to me to be the problem here, though I grant you I am speculating again, and need to go back to my ALS notebooks and handbook and check this out.
But obviously what I'm worrying about is that Joe is already experiencing respiratory muscle weakness, before losing ANY other capacity completely, which would be a grave development. But I should not be worrying this much prematurely, because we'll know soon enough: he and Karen are sharing the drive to Boston, to the Lahey Clinic (sp?) where he has a follow-up appointment. There they'll be able to tell whether he has lost ground and if so in what areas and how much. They'll be able to discuss with him suction machines and breathing aids, should he need any.
I feel petty discussing my rather trivial problem after Joe's life or death one, but I suspect you'd want to hear about it, so here goes: I went to see my primary care physician (PCP) about something else, but the nurse wanted to weigh me first, I guess as a routine stat they get at every visit. I told her 101 was my usual, as I didn't look at the scale particularly (those slide kind are hard to read quickly) and she said, "Oh, no, you don't weigh 101. You weigh 97 pounds." Shocked I followed her into the examining room.
Back home after the exam, Dr O called for a scheduled telephone appointment and I told her about the exam and my weight. She seemed quite sympathetic, as usual, though as usual I feared she would be angry, and when I said, in no uncertain terms, "I've got a problem," she seemed relieved to hear me acknowledge it rather than say that I simply wanted to get down to a certain safe number.
We talked about the fact that despite my claims that my metabolism was screwed up, I had lost 3-4 pounds in a week, which was appropriate for the number of calories I was taking in. Most people on a diet lose maybe a half to one pound a week, or less once they hit a plateau. I know that my metabolism is not normal; I have never been able to eat like other people do without gaining weight. I've made my peace with that. But I don't feel good eating as little as I do, one, and I know I don't look good either, though that matters little to me, except insofar as I do not want to be conspicuous.
But what to do, what to do? Both the nurses and Dr O are going to make me drink Ensure or Boost if I can't eat more and those are all high fructose corn syrup (HFCS) as the first and highest ingredient! HFCS is the worst substance we have ever devised and accounts for the epidemic of obesity in the US as well as for the huge increase of cases of diabetes type II. It is in EVERYTHING from bread to soda and in every processed food you can think of...Just look at the ingredients and you'll see it. And sometimes you don't, because it has been broken down into component molecules and those have been used instead! This is all because of our corn glut, and the subsidies that encourage farmers to plant and grow ONLY corn, vast acres of corn, row upon row. If we subsidized a variety of vegetables, as we should, we'd get a variety, but no, we don't think like that.
But end of sermon, and back to Boost or Ensure: aside from the HFCS I don't know where its protein comes from, soy probably, and its vitamins, not from natural sources you can bet your socks on that. So it's a can of corn sugar doctored with chemicals and soy (the other huge cash crop besides corn). Now why would I want to drink that for 350 calories when I could make a "Paula shake" in the blender or eat the food equivalent? Yet it strikes me as easier to drink a premade supplement that I don't have to prepare, because I don't have to do anything but drink it...This from someone who cooked Joe beef meatball merlot today???? I know, I know. But did I eat any of it?
I think if I tried the supplements for a few days and got the 700 calories down, then I might decide I would prefer to eat them than drink them...it'd be a way to start, I think. But would I even drink the 2 cans a day, Ay, there's the rub, as one of Shakespeare's characters said to another (sorry Paula, that's as close as I could come!). I have to try something, I cannot keep losing or I'll end up back in the hospital. I have speaking to do in October and this blog to write and Joe, who needs me, and so many reasons to stay away from that place that I'm gonna fight like hell to stay OUT. As Paula has acknowledged, I need to control something, and if I can I will control this too.
ANECDOTE OF THE JAR - a discussion
This poem I found very difficult at first. It made not a bit of sense to me, though for some reason I rather liked it, I cannot for the life of me say why, since it struck me as supremely clunky, especially at the end. I discussed it with a friend, but we came to no conclusions and in the end, had no idea what it was "about." So I was still in the dark. This strange little poem kept bothering me and bothering me (this was before the internet could have helped me figure it out) until one night I had a dream about it. In the dream, somehow, it came to me that the jar (you'll see) stood for man and man's civilization, and when I woke, suddenly the poem made sense. Now I cannot tell you that the analysis that follows is "canonical" -- it may be that it is or would be considered completely wrong. But it was the one I came up with that best fit the words as I read them. I do not know how others interpret the poem, except for one person, who totally disagreed with me and said the jar represents nature! So much for certainty...But with that caveat, here is the poem and my analysis.
ANECDOTE OF THE JAR
I placed a jar in Tennessee,
And round it was, upon a hill.
It made the slovenly wilderness
Surround that hill.
The wilderness rose up to it,
And sprawled around, no longer wild.
The jar was round upon the ground
And tall and of a port in air.
It took dominion every where.
The jar was gray and bare.
It did not give of bird or bush,
Like nothing else in Tennessee.
You'll note that the poem begins with "I", and this "I" placed a round jar upon a hill in Tennessee. It -- presumably the jar -- made the slovenly wilderness surround the hill.
Now what does this tell us? Well, first of all, "I" is single, a single man and if he placed a jar on a hill in Tennessee, and the jar represents, as my dream implied, civilization, than the "I" could have started a community there, a family, a town, something, some group of people or some form of civilization, even a farm or a house. It is round because nature is rarely perfectly round, and so this is an unnatural shape (except for the planets) ie something man creates. But even more unnatural is the fact that it "made the slovenly wilderness" -- wilderness being slovenly says a lot about the attitude of this narrator towards nature, though I think he is being ironic, or taking on the attitude of those who think that way -- "surround that hill" -- that is, it forced nature to do something against its will, surrounding the hill but not climbing it, perhaps by tilling the soil or putting in a lawn or building on it.
Then, he explains this: the wilderness -- that is, what is slovenly and wild -- rose up to it, but not past it, and sprawled around, but was "no longer wild" -- the jar had tamed the wildness of the wilderness, just as farming tames nature and as civilization tames the land.
The jar was round ie artifical, we are told again, and tall "and of a port in air" suggesting tall buildings, even skyscrapers. Wallace Stevens lived in the city of Hartford where there were technically few skyscrapers in his day but some very tall buildings and surely knew NYC.
Then finally, we are told, the jar "took dominion every where" not just that hill, just as man does, especially Americans. The jar is now "gray and bare" ie sterile and barren, dead. It harbors neither bird or bush. This means that it too is dead, that by killing nature it has killed some part of itself. "like nothing else in Tennessee." I could take the last line to mean that Tennessee for the most part is still wild, except for this hill, but this is phrased so strangely that this is hard to say for sure. I vacillate between that and, my preference, saying that he means that ALL of Tennessee is as sterile and dead as that hill. But does he mean Tennessee, or the whole country, even the world? I leave that to you.
So is this a poem about man defeating nature, about civilization killing nature and killing the wilderness within itself at the same time? I think so, and I think I have proved why. But what Wallace Stevens meant by it, I can't say for sure. I know that at least one person had a completely opposite interpretation, so I know I might be mistaken in this one. I'll have to check out the "received", or accepted one on the internet, if I can find it. Or perhaps ET will tell me. (Please, Paula?) I will let you know what I learn, as I do not want you to have gotten something from me that is outlandishly wrong!
If any of you have other ideas about this poem, do share them. I am not overly attached to my interpretation and would love to hear what you guys think. Don't be shy! I am new at this sort of thing, myself. Truly. I did none of this in college and am just fudging it now, doing my best simply from reading and thinking about the poem's words and how it reads out loud and so forth.
Okay, here's your chance to tell me your all-time favorite book. Several people, most recently I believe, Yaya, have asked me for reading suggestions, and so I'd like to ask for yours. If you put the name of your favorite book(s) in the comment section I shall add it to the list here. Please do put a very short description of the content if you wish, or at least say if it is fiction or non-fiction. Don't put down more than three at a time or I won't be able to copy them all. Let's make Yaya a happy reader, shall we? Thanks, everyone.
I'll start with a few of mine:
Bel Canto by Ann Patchett (a novel about a group of kidnapped opera lovers and an opera singer, as well as their kidnappers; incredible writing)
The Beekeeper's Apprentice by Laurie R King (the whole series read in the proper order is terrific, about a fifteen year old girl who becomes apprenticed to Sherlock Holmes)
The Giver by Lois Lowry (an award-winning young adult novel about a young boy in a town where sameness rules and there are no colors...who learns truly to see)
Uncle Tungsten + The Man Who Mistook His Wife for a Hat + any other book by Oliver Sacks. (Uncle T is a memoir of Sacks' growing up under the spell of chemistry but he is a neurologist and most of his books deal with the more peculiar cases he has treated...which are fascinating and real).
Cynthia adds these to the list:
Enormous Changes at the Last Minute (short stories) by Grace Paley
An American Childhood (autobiography) by Annie Dillard
Pilgrim at Tinker Creek (essays) by Annie Dillard;
American Primitive, poems by Mary Oliver
Debbie votes for George Orwell's essays, esp "Such, such were the joys," his memoir of boarding school.
Donna recommends Irvin Yalom's books about his practice as a psychotherapist.
Polar Star by Martin Cruz Smith (fiction)
The Screwtape Letters by CS Lewis
Yaya writes: my favorite books to read for pleasure are mysteries. I like P.D. James and absolutely love Ruth Rendell’s crime and psychological thrillers. In my humble opinion I think Ruth Rendell’s mystery books are a cut above all other mystery writers. I find her writing very elegant and her plots original. She also writes under the name Barbara Vine. It’s been a long time since I’ve read any of her books but I noticed she has in the last 3 years written 4 new novels ---- “Thirteen Steps Down” http://tinyurl.com/obawq, “The Water Lovely”, http://tinyurl.com/ggced, “End in Tears” (Inspector Wexford series) http://tinyurl.com/hao4g, and under Barbara Vine, "Minotaur" http://tinyurl.com/zhs35
(Yaya, I adore mysteries myself and think some do reach the level of literature. But who cares if not? Have you tried Barbara Pym, a British author? There is one, I forget the name, with a vacuum cleaner called the Abhorrence (because nature abhors a vacuum!) that was delightful. Although they are less classical mysteries, I also adore Carl Hiassen's books, any one of his, which are both hysterical and yet quite serious in content, always raising ecological or ethical issues that make one think.)
ET adds quite a few. She asked me to choose one of each category, but of course I could not possibly, so I am including all ten, five for pleasure reading and five classics.
1.Rebecca - Daphne duMaurier
2.We Have Always Lived in the Castle
3.To Kill a Mockingbird - Harper Lee
4.The Bell Jar - Sylvia Plath
5.One Flew Over the Cuckoo's Nest
1.The Grapes of Wrath-John Steinbeck
2.Heart of Darkness-Joseph Conrad
3.As I Lay Dying-William Faulkner
4.Nine Stories-J.D. Salinger
5.Tess of the D'Urbervilles- Thomas Hardy (I added this author, hope I'm correct...PW)
Barbara's $200 (better'n 2¢) worth goes for: Narcissus and Goldmund by Hermann Hesse
Letters to a Young Poet by Rainer Maria Rilke
And Kate gives us some books about writing poetry plus:
A POETRY HANDBOOK: A Prose Guide to Understanding and Writing Poetry by Mary Oliver (1994)
THE PRACTICE OF POETRY: Writing Exercises from Poets Who Teach, Edited by Robin Behn and Chase Twichell (1992)
THE POET'S COMPANION: A Guide To The Pleasures Of Writing Poetry by Kim Addonizio and Dorianne Laux (1997)
Two relatively recent books I've read that I enjoyed a lot:
THE YEAR OF MAGICAL THINKING by Joan Didion (2005) . It's about how she tried to cope with the sudden death of her husband. I think Joan Didion is an excellent writer and I'm in the process of reading her work. She's very honest and yet has the objectivity of a good journalist.
THE NAMESAKE by Jhumpa Lahiri (2003). She won the Pulitzer Prize for her previously book INTERPRETER OF MALADIES (short stories) which I also recommend. She's an Indian American and explores in her stories and novel what it's like to be Indian in India as well as what it's like to grow up in America. She's young but very talented.
An Esteemed ET (English Teacher) writes: " I do feel compelled to correct a misconception of terms that you used in your blog. You advised avoiding the use of gerunds or words ending in "ing". All words ending in ing are not gerunds. A gerund is a verbal that is a combination of a noun and a verb as in,"SWIMMING" is my favorite sport. When a writer uses a construction such as -I AM SWIMMING in a competition today.-SWIMMING is not a gerund, it is the present participle of the verb "to swim" which is always used with a helping verb which is "IS" in my example."
So, readers, please remember, GERUNDS are indeed allowed, because they are essentially verbs acting as nouns, but the present participle, as in "I am swimming" or "He starts running" is weak and should be avoided.
Many thanks, Paula, er, ET, for making this important distinction, which I did not remember, having passed high school English MANY many years ago...and promptly forgotten all the rules of grammar that I could!
It used to take stiff sloshes of coffee and a cigarette even to think about writing. Then I'd have to read someone I admired in order to stimulate my brain, the flint of their words sparking off ideas. That was back in the days before my "awakening" on the atypical antipsychotics.
Now it takes considerably less effort, thanks, I believe, to the boost of Abilify, under the influence of which I find I write reams with little effort, at least in the sense that there is no hump of inertia to surmount before I can put words one by one on the page. But what precisely to write about? How do I find my subject, ask some who are at a loss at this stage of the process. They want to write, and are full of corruscating words and scintillating phrases and metaphors, but they can't decide what to write about.
I spend a lot of time involuntarily doing nothing. Of course, I don't truly do nothing; I'm distracted, from reading usually, and find myself thinking about something else, sometimes as hours pass without my noticing. Often these thoughts are dark, even frightening and become mixed with symptoms such that I call them "day-mares." Others present themselves to me as possible situations that pose problems I need to solve, sometimes ridiculous, others serious, but all frustrating or otherwise difficult: these are "scenarios."
Day-mares I tend to leave alone, as I don't want to continue down the road of thinking about them longer than I need to. But scenarios, those can sometimes turn into an essay or short story. So treasure your daydreams, your distracted thoughts, your abstractions and benign delusions -- there, underneath the dust and detritus, hidden by dried dead leaves and underbrush, may lie your subject matter. Anything can be written about, even, yes, saddle leather (who suggested that? I'm gonna have to write about it some day...just to prove the point). The writer's job is to find the story and make the subject shine.
So, say I have my topic. What now? Well, I just start writing. I seem to have no trouble beginning anywhere, and have a knack for finding the way in, though I often do have to rearrange and find the proper entry point later. But there's no problem starting, nor in continuing, though I find that coming to an end, and finding a proper conclusion is a little more tricky for me. I write until I'm exhausted and then haven't the energy to do more than tack on a quickie conclusion, or none at all. (That is, if I am writing in my blog. For more formal pieces, I go to bed and write the conclusion when I am fresh.)
But for novice writers this presents more of a difficulty. I think what you need to do is to look at your subject matter as if seeing it with the eyes of a Martian who has never seen the like before. Look as it with new eyes and enter the story there, with the most salient detail, whatever that may be. If you are writing about the newly designed firetrucks your municipality just bought, you might think that their color would be the detail that first strikes the eye, but looking at the trucks with eyes brand new and freshly open, you see that they actually look a bit like giant crickets...and you start your story about them with that observation, and maybe even mention the Martian seeing them and thinking this! The point is, you need to find something about your subject that is different and unspoiled by overuse, that no one else has observed or written about before, and start there. Hook your readers and draw them in with it, it's the most important sentence of your essay: the first line, which will either captivate or disappoint readers, leading them to continue reading or quit your essay or story and flip to something else.
While I am writing, I do nothing else. I quit smoking 18 months ago, cold turkey, so I don't even do that. I don't eat, might drink water, but forget to do that most of the time -- there! just had a few big gulps -- and I rarely get up from my chair to take a break. I simply write and write and write. I doubt most people, especially novice writers, could take this sort of pressure, and I do not recommend it. I recommend breaks, as needed, and every two hours, a half hour walk outside to clear one's head and get the blood moving (advice I really should take myself). I recommend high protein snacks as well as raw veggies at hand as long as you don't get any food in your computer! And a bottle of water always available, three 16oz bottles a day at least.
The Abilify makes me almost unable to stop writing, thought...and I'm wondering if it isn't unhealthy to be doing so much of it. Blog, emails, my notebook, pages and pages a day, whenever Joe doesn't need me, and he is doing fine these days. But I enjoy it all, and feel wonderful that the words just pour out of me. The problem is that when I am written out, when I have no more to say on any given day, and I've written in my blog and in my notebook all I can think of, I'll start repeating myself, saying the same things over and over in different ways, simply in order to keep writing...Can writing become pathological? Oh, well. THAT I refuse to worry about as it is too much damned fun at the moment! I never dreamed the day would come when writing would be effortless, no longer a chore but nearly a compulsion...In fact I treasure this new-found facility and wouldn't trade it for all the tea in Darjeeling.
It is usually near midnight before I stop for the day. Frequently I will write for eight or nine hours over the course of 24, and sometimes much longer if I am alone and not interrupted. I love both the starting and the doing as well as the editing of my writing. Every step is a pleasure. The hardest thing is knowing when to stop. But at midnight, I take my first dose of Xyrem, my other miracle drug, set the alarm for 4:00am for the second dose, and am asleep by quarter of one. The day and my day's writing has come to an end.
Warning: I don’t actually know how I do it. I mostly wing it each time I sit down with a pen and paper or my computer, but there are a few “rules” that I think universally apply. Some of these you no doubt have heard before, “show don’t tell” for one. Yet when you sit down to write you find you do not really understand what that means. I hope to make it and other “rules” clear. Once you know the rules and can follow them, then of course, you are free to break them if you can think of some better way you want to write. Some writers actually do.
Show don’t tell: what do I mean by “telling”? Well, it’s...Here’s an example: first I tell, then I rewrite it showing.
1) I’m feeling very frightened. Terribly anxious. I’m starting to worry that I might have the worst panic attack yet. I feel those scary palpitations beginning already...
2) My stomach twists itself into a granny knot. I tremble. Is an assault to start? Already my heart thunders against my ribs, as if trying to free itself...
Now why is #1 telling and #2 showing? Look at the words. “I’m feeling very frightened. Terribly anxious” Here I am telling you how I feel, straight out, nothing more to say about it. Compare it to the first line of #2. “My stomach twists...I tremble.” Not a word telling you how I feel, actually. I haven’t said I am fearful or anxious. Yet you know I am. Why? Because I have appealed to your senses. I have shown you familiar physical responses to fear and anxiety, I’ve shown you “symptoms” as it were of my feelings and let you intuit how I feel. In short, I’ve allowed you to participate in my writing, get involved with it and therefore absorbed by it. Telling readers keeps them on the surface and fails to draw them into the text, whereas showing them keeps the readers involved and is the best way to invite them to stay with a piece of writing.
How do you “show don’t tell” in writing? And is it only in the matter of feelings? You use your senses and let the readers use theirs. You note how you feel and what you smella dn taste and hear and touch and convey it all to the reader. And you use details. Also it’s not only a matter of feelings, it’s thoughts (Fictional sentences: “I think about my father’s “visiting his friend” every Christmas, which was the lie he told when he wanted to go to the bar, then he came home and beat up his wife and kids...” versus “I think about how my dad was a physically abusive alcoholic.” Which one shows and which tells?) and it’s events and it’s everything in a narrative.
NOTE: Sometimes something should be told, though. When you make a transition between sections or episodes or dates, or want to move quickly from one subject to another, or simply for a change of pace, you might want to take a break and tell the readers a bit of “what happened in the interim” etc. You develop a feel for this after a while. The critical thing is to know how to show an event, a feeling, a thought, without telling the reader outright. The instinct for when to tell will develop on its own. Do not worry about it!
As a corollary to Show don’t Tell, several rules apply: 1) Use vivid verbs; 2) use as few adjectives and fewer adverbs as possible; 3) avoid gerunds, that is, “ing” forms of the verb if you can; 4) go for specific details not just generalizations: granny knot rather than knot for example. 5) try to express things that you want to describe in fresh language and metaphor, which add life and sparkle to any writing.
Now let’s go back to my first Show don’t Tell example and take a look at it according to the rules above, so that I can explain them better.
My stomach twists itself into a granny knot. I tremble. Is an assault to start? Already my heart thunders against my ribs, as if trying to free itself...
Please understand that this was written on the fly and is not the best sentence. But it will do for an example. First corollary rule; Use vivid verbs. “My stomach twists itself”. “Twists” may not be the most original of words or concepts but it carries with it a strong feeling of internal turmoil and conflict both physical and mental, and is a little better than “ties” and more vivid than “turns” or the insipid “gets”. What might be fresher and more vivid than twists? Let me see...braids, weaves, winds, coils, deforms, transforms...OR I could change the whole metaphor to something fresher. But staying with this one for the time being, I’d say twists is the best, for evoking in the reader the physical feeling of his or her stomach actually being twisted into knots.
Let’s look at the word “thunders” which is surely a vivid verb, and yet I had my doubts about it and still do. I don’t like the two syllables. Originally I had written “pounds”, which is more prosaic and used more often, though “thunders” is not exactly unused, but I wanted it for its single syllable. I need to see if I can find a fresher more colorful verb with one syllable...But why one syllable? Because all the single-syllable words with occasional two-syllable ones suggests a heart beating, but two two-syllable words together seems to me to interrupt this rhythm. Or at least I think this is why I don’t like “thunders”...Can’t say for sure. It may be that “thunders” simply slows down the flow of the words.
“Knock, flail, batter, bang, thump” are words that could substitute for pound. So are, “Whack, slam, crash, bump.” Hmmm. Yes, I like it, slam, a heart slamming against ribs, like a wild animal that slams against the walls of its cage trying to find a way out... it’s fresh, I’ve never heard it used, and vivid to the max. So we’ll replace “thunders” or “pounds” with “slams”.
My stomach twists itself into a granny knot. I tremble. Is an assault to start? Already my heart slams against my ribs, as if trying to free itself...
Now, I am unsure about “tremble” but I’m going to leave it for now, because I want to get to Rule #2: use as few adjectives as possible and fewer adverbs. Count up the adjectives in my example. I believe there is only one, and it merely characterizes what kind of knot it is, which makes the knot more specific and vivid. More on that later. Believe it or not, adjectives and adverbs weaken your writing, where strong nouns and verbs strengthen it. Write a paragraph, read it, then read it again without any adjectives etc and see just how many were truly necessary for the message to be gotten across. And if you change the nouns and verbs to reflect what the adjectives did, weakening the piece, you’ll have a much stronger and sparkling piece of writing in the end. Try it. You’ll be pleasantly surprised, though it takes some discipline and it is always hard to cut away those “essential” adjectives one labors so hard to find and append to a noun or verb. Work hard instead to find just the right verb or noun and you’ll have better spent your time.
Take it as a rule, because I can’t give you the reason [AVA: can you help with any of this???], except to say that it weakens all writing: DO NOT USE GERUNDS, that is –ING forms of words if you can avoid it. Try not to write: “I was starting to feel as if” or It was beginning to seem that he was a---“ Just say “I felt” or “He was” and if you wrote: “He was running down the street” go back and change it to “He ran down the street.” This can be done in the editing stage. I have to do it all the time, because I forget too. But it is always good to remove all the "I was starting to" and "He was beginning to" and as many –ings as you can, trust me on this.
Now for the BIGGIES! Give the reader details, details, details! Be specific even when you want to generalize. When Annie Dillard writes about Nature in general, she does so by writing in specific about, say, the giant waterbug, not about bugs in general, or perhaps about the northeastern hemlock and its parasites specifically, not just about trees. Details are essential to keep readers interested and hold their attention. The minute you write in generalizations, you’ve will have lost them, unless you have prepared them for it by means of specificity and they are willing to grant you the time to draw some general conclusions.
We need details, sensory details about physical sensations when you are showing us how a person feels, so that we may feel it ourselves and intuit the feeling. We want to know how something smells and tastes, what the texture is, what it looks like or how it sounds. We want all of these details in order to have as clear a picture of what you are writing about as possible. Let us be with you as you describe for us whatever you see with your mind's eye or with your real eyes, wherever you are or wherever you go in your mind. We want to go there with you and are more than willing to accompany you. We're puppy dogs, we readers. We salivate over good writing. All you have to do is take the lead and we will be happy to follow. Just give us details so we can!
And finally, how to make your writing snap crackle and pop. Use simile (“His nose is like a potato”) and metaphor (“he has a potato for a nose” or “His nose is a potato”) Metaphor often affects the reader more, by virtue of its shock effect. But simile gives the reader some warning and lets him into the comparison more gently. They are more or less interchangeable, but for this. You will get a feel for when you want one or the other.Though writing a good metaphor or simile is one of the hardest things to master for most people, I happen to believe that those of us who have schizophrenia more or less in remission or who are in recovery may find it easier than others. I could be wrong, but I think our looser way of thinking, our ease with oddness and “weird thoughts” – you know what I mean, I think – makes it easier to come up with the kinds of comparisons between completely different things that make interesting or fresh metaphors. However, those who take care of those with SZ may have the same ability, simply by virtue of knowing what this thinking is like.
In any event, easy or hard to do, metaphors and similes are the lifeblood of good, detailed, sparkly writing. You don’t want every sentence to hold a metaphor, though. No, you want to use them like pepper: spice up a narrative with them, add flavor and punch. But use them sparingly so that when they appear they are noticed. Your writing will be so great, what with details and your ability to appeal to the sense and show not tell that even without the metaphors and similes for a while, readers will follow right along, stepping on the heels of your shoes in their enthusiasm. The only thing for it is to keep writing.
So go and write. BUT you must also read! Read good writers; ask a librarian who they are; develop a list of the writers you enjoy; examine their writing, see how they achieve their effects, try to copy them if you like. It won’t harm you or keep you from developing your own voice, because no one can copy perfectly and your copying will still be you, or will become you over time. Read and read and write when you can. But when you can’t, don’t beat yourself up. There were whole years I couldn’t write. I came back to it eventually because life without writing was meaningless. When you can write, try your best to follow these few rules and above all, keep writing. Because the only way to learn to be a writer is to write.
And no fair looking for all the rules broken in this entry...I’m sure I broke all of them a zillion times, but hey, even Homer nods! BD
Good luck and good writing!
Readers, you were so great with your suggestions when I asked for them. I would love some more-- specific topics. That's what would help the most. For instance, someone suggested middle age, so I wrote about that. And someone else wanted to know about how to write, so I wrote about that. And so forth. I do have other things to say, but really specific requests would be very helpful, if you can think of some. Or general ones, but specific in that they are a general topic: middle age, saddle leather (hmmm) and so forth. I'm not too good about writing my "thoughts about love and life" though! BD HALP! AU SECOURS!
First I need to respond to comments from yesterday: To Paula and Cynthia I can only say that I will take your advice very seriously and think about trying your suggestions. I have already been eating high protein foods -- sardines, slices of turkey -- instead of carbs when I can. I think it makes a big difference in terms of energy, though when I forget to eat at all, all bets are off. I plan to set a timer for each meal and when it goes off, eat something, yes, cold, Paula, as I've almost always preferred cold food anyway with hot drinks. Then I'll set the timer for the next meal...and so on around the clock 3X day.
Kate: you have hit the nail square on the head! The fact is I do not love my body, never have. I don't much care about it. I don't hate it, just don't give a damn about it except that I want it to remain as inconspicuous as possible, which is why I do not believe I am anorexic. In point of fact I know that being that thin makes one extremely visible, conspicuous in fact, whereas being just mildly underweight is fade-into-the- woodwork thin. For that same reason, I do not want to be so thin I attract attention, from anyone, for any reason! The ONLY reason I would want to lose weight is simply to prove to my body just who is master, who is in charge here! But the less said of that the better.
Now then, my day: This morning, Joe and Karen and I went to the ALS Support group at the university's health center. We entered a completely changed cafeteria from the one I'd known in medical school, a rectangular instead of a circular space and strictly utilitarian compared to the architectural one I remembered. But when we saw a man pushing a walker with a seat in the middle, we knew we had come to the right place. There, waiting in front of the dining room where the group was to be held, were several people, a few in motorized wheelchairs, some using other aids to walking, some looking perfectly fine.
I felt shy, as I usually do among strnge people, and was glad to have Karen there to talk with. But Joe, Joe was in his element. He's been working with the Democratic Town Committee for a couple of years now and developed an ease with social gatherings that I hadn't seen before. Now I was impressed, watching him introduce himself so graciously and ask after the person's name and engage in conversation that when I first met him 21 years ago would have been impossible. He has come so far...
When the meeting began, introductions were made and then Joe was asked to start, because he was new and full of questions. I can't recall everything he asked or what the responses were. But I remember two things clearly: one was that he seemed so happy to be among people whose voices were like his, uttering hard to understand speech that was both slow and slurred. I could see his point: despite individual differences, they really did sound like he does. The other was his poignant question about where the others found "meaning" in their lives. They clearly had no idea what he meant, probably had done enough in their lives for this to be no problem, because their only response, to a one, was that he needed to find a hobby!
Joe, though, meant something entirely different; he has suffered from schizophrenia for the last 20 years and it kept him from fulfilling his potential as an electrical engineer or inventor. Now that he has ALS, mortality is on his mind and he is desperate to find something he can do to "leave behind." I could tell him many things he will be leaving behind of great value, and do, but the big difficulty is that the ONLY thing that matters is that it has to be something worthwhile, that is, in engineering or an invention. Well, I can't make that happen, much as I wish I could snap my fingers and wish it into being somehow, somehow...
One last and hopeful part of the support group was that a 74 year old man told us that he had been diagnosed 10 years before, and his ALS had started in the bulbar region (that is to say, the face, tongue, throat, neck) just as it has in Joe. Now ordinarily this type of ALS progresses rapidly and poorly. But he wanted us to know that despite his bulbar ALS he was a 10 year survivor and still didn't need a wheelchair. Also, he was still speaking. So there is hope for Joe yet, and even for his voice!
Later this afternoon, I was picked up by a Lincoln Town Car and driven by chauffeur (ooooée!) to Lynnie's house to talk to Matt and Keri about these media interviews they hope to set up, Good Morning America etc to publicize an international caregiver survey they are in charge of, Then we had a conference call with someone at their agency to do a mock interview to practice getting the message across properly. Difficult to do when there is a specific message and not just a story to tell. I don't know how to steer the interview towards what I want to talk about, ie what the group that did the survey wants me to talk about. I'm not a professional interviewee! And I don't like doing this sort of thing, where I have to remember things I know I won't in fact remember!
In fact, I got upset during my mock interview because the interviewer confused me by stepping out of the interviewer role and asking me a question as herself...and I didn't know it...and she just steamrollered over me without giving me a chance to say a word. I couldn't figure out what it was she wanted at that point and said so, feeling like I should just give up, actually feeling like I was going to cry. This time it was a voice that saved me, the mocking one that whispered "Pore little crybaby..." in my ear, sarcastically, that made me so angry the tears just evaporated.
Afterwards we went to the diner for supper and I actually ate a quarter of a huge turkey and bacon club sandwich. You'd all have been proud of me! After an hour and 15 minutes on the road again, I was finally home again at 9pm and much relieved to be here at 10:30, writing this.
is Wednesday so I had to get up early in order to make the hour-long trip to see Dr O at 10am. Joe came up at 8:00, still functioning so well he insists on driving me, though I have arranged another driver when the time comes that he can't. Though his voice was poor this morning, we talked for a half hour, until the nurse came to give me my medications, and then we were on our way.
Made it just as Dr O was pulling into the parking lot herself, so I walked upstairs with her while Joe went to get breakfast. During my appointment, we talked about neuro-feedback, a technique of dealing with brain waves of a certain kind that she says helps the brain to heal. I cancelled a trial session of this, mostly because I'm afraid she'd be able to read my mind and I need some privacy. She tried to tell me it wasn't like that, but frankly, I'm still afraid...and refuse to do it.
We also discussed an Axis II diagnosis that had never before appeared on my discharge summary. I questioned her about this, wondering about its validity. Her answer definitely did not convince me, but there were other matters to deal with so I said, Okay, and left it there. The other matter was my issue with weight and food, the latter being so very difficult for me to get down. I keep forgetting to eat and even when I remember and tell myself it's time to eat lunch, say, I can get caught by a stray thought and distracted so that I forget what I meant to do and do something else for so long that it is suppertime before I know it. Even then I might not feel hungry. If I were hungry, I would eat. I know that, because I eat on the Zyprexa despite all my vows not to gain weight. But I don't feel hungry and food seems so distasteful to me that I just don't think to eat until I get scared by how little I've actually consumed all day and finally do eat something to bring the calories up at least a little.
I'm not losing weight, though, don't worry. My metabolism has so adjusted to this not eating style of life that I survive on it fine. I weigh between 99-101 lbs (the diurnal variations) so while I'm thin, underweight I guess, I'm hardly at death's door! BD However, Dr O did warn me that if I start losing weight for any reason, she'd have to hospitalize me if I dropped to 90lbs. That won't happen. I think I'd be horrified by what I was doing to myself before then, and start eating whether I wanted to or not!
After my appointment and the hour-long drive home, Joe went to take a nap and I came home to this apartment and my trusty computer, at which I spend so much time every day. Did e-mail and some research on the net. Read about 10 pages in Bee Season by Myla Goldberg, a novel I read and loved just last year, I know that much, but which otherwise has so slipped from memory that I am reading it again as if for the first time. This happens so often it is scary. I find I have trouble reading and remembering anything I read. I can't seem to truly learn new things, though I do of course, because I "get" the news and know more or less what is going on in the world (though I often forget it) and meet and remember people etc. But learning as in school-type learning is difficult, very, and I am glad that school is behind me, because I couldn't even take a class right now.
I forgot lunch again, though I said several times, "I've got to eat lunch..." then promptly was distracted by other thoughts, incoming e-mail, another project that needed my attention, something, anything! Finally, the evening nurse, Ana, came to give me the pm meds. She said I looked worn out and exhausted, which was weird because I felt fine, but then she asked me if I ate anything today...and didn't like it one bit that I'd only had a bit of turkey for breakfast, nothing since. "That's why you look so washed out, Pam. You haven't eaten anything! Now I want you to eat supper, now. Okay?" I mumbled assent as I let her out. Then opened the fridge. Oh gawd, I don't want any of that. I went back to the computer until 6:30pm when I remembered once again my promise to Ana. Okay, so I better eat something. But what? Well, there is some fresh cauliflower and carrots...How about cooking those in chicken broth? So I did that, but was caught up in computer stuff when the timer went off, and forgot it until 7:45. Finally ate. But it wasn't enough calories and so I'm going to have to think of something to bring those up tonight once again...
Tomorrow I get a ride in a Town Car all the way to Wilton to meet with 2 people who want us to do interviews with "national media" if they can arrange it, in order to publicize an international caregiver (for those withmental illnesses like schizophrenia and bipolar) survey. Dunno what it's all about but we find out Thursday I guess. Also tomorrow is an ALS Support group that Joe and I and another friend are all attending in the morning. That ought to be informative and I hope to meet a woman with whom I've been corresponding, from the ALS Association of CT.
As for symptoms, few have bothered me today except for persistent "music" which played continuously morning to night. Only a couple times did voices intrude and then the words were mumbled and hard to understand, so I didn't pay much attention, though the intent was clearly malicious, I could tell from the inflection.
So that's another day that if you lived in my skin you would have lived through. And my apologies for such a completely lackluster post! I guess I am more tired than I thought. I promise to do better next time.
The poem below is one of my favorites, but it is not an easy poem to understand. Hopkins makes up words to fit his needs and while they suggest what he means, they do not literally mean anything. So "translation" is difficult and a matter of personal interpretation more often than not. My advice to new readers is to read the poem several times silently then try reading it aloud, giving it some grammatical sense, even where you think it has none because of the new words. If you read it as if it makes sense, you'll be surprised at how much sense it actually does make. Then read my explanation and interpretation below. Or if you want to, read those first and then the poem. Enjoy!
by Gerard Manley Hopkins (1918)
Not, I’ll not, carrion comfort, Despair, not feast on thee;
Not untwist—slack they may be—these last strands of man
In me ór, most weary, cry I can no more. I can;
Can something, hope, wish day come, not choose not to be.
But ah, but O thou terrible, why wouldst thou rude on me
Thy wring-world right foot rock? lay a lionlimb against me? scan
With darksome devouring eyes my bruisèd bones? and fan,
O in turns of tempest, me heaped there; me frantic to avoid thee and flee?
Why? That my chaff might fly; my grain lie, sheer and clear.
Nay in all that toil, that coil, since (seems) I kissed the rod,
Hand rather, my heart lo! lapped strength, stole joy, would laugh, chéer.
Cheer whom though? the hero whose heaven-handling flung me, fóot tród
Me? or me that fought him? O which one? is it each one? That night, that year
Of now done darkness I wretch lay wrestling with (my God!) my God.
The first line essentially says that the narrator, let's assume it is Hopkins though it may not be, refuses to indulge in despair. Despair is a "carrion comfort" -- comfort likened to dead flesh that he will not "feast" on. The juxtaposition of carrion and feast is so gruesome that it makes despair seem almost repulsive. He will not untwist or undo the "last strands of man in me" or cry "I can no more", ie "I can't take it any longer!" He will not give into despair and kill himself. He can, he can take it, he can live through it, "hope, wish (the) day (light would) come, not choose not to be" But who is "thou terrible"? Despair? I happen to think he is hinting at something else. I think he means God and this is why: "why would you hit me with "thy wring-world right foot rock?" or with your devouring eyes look over my bruised bones and in the midst of my struggles make things worse, with me in a heap, "frantic to avoid thee and flee." Now I believe that he is frantic as a despairing man is to avoid God and flee from faith. To give in to despair is to reject God, after all, it's a way of saying to God: you don't matter to me, I hate the life you gave me...
But all this is a question. Why, WHY would you do all this to me? And the answer: So that my chaff might fly -- chaff is the useless part of the wheat that has to be winnowed away before the grain can be eaten. This is done by sweeping up the grain into the air, where the chaff, being very light, wafts away on the breeze and the heavier grain falls to the ground. One's chaff ought to fly, it is useless and extra baggage one doesn't need. So that "my grain", the good parts of me, can "lie sheer and clear."
No, in all that work, that struggle (coil) since it seems "I kissed the rod" -- meaning the rod of punishment, the rod of Spare the rod and spoil the child... but not a rod actually, a hand. It was a hand he kissed; you kiss the hand (ring) of the Pope, God's representative on earth (Hopkins was a Catholic priest) and since then his heart lapped strength, like a kitten laps milk, stole joy, would laugh and cheer. But whom would he cheer? The guy (hero) whose handling from heaven flung him and whose foot stomped him? "Or me that fought him?" That night, that year, of darkness, which is over now, when I, a wretch, wrestled with (oh my god!) God.
So what is this poem "about"? Well, for me it's about doubt and despair and God testing Hopkins by taking on the guise of despair to make him struggle with the worst God can throw at him. This is done in order for him to see that he can make it, can survive and be better for it (chaff-free), and to know that his faith can survive and come out the other side, having wrestled not so much with despair as with Despair, and God himself.
Reminds me of another who wrestled with God...
During this last hospitalization, Dr O was telling me what the nurses saw when they looked at me: a thin, middle-aged woman, with blond hair and—
I had ceased listening by then. You mean I looked middle-aged? I knew I was in those years, yes, but I didn’t look the way my mother did at 53. Anyway, 53 was only a number, and we all knew I was barely 15 in social maturity. I was way beyond that intellectually, but that didn’t count; it seemed I’d always been intellectually in my 50’s so to speak, at least since Zyprexa opened my world. It struck me like a fist to my solar plexus that I’d become middle-aged overnight, that I’d lost my entire youth to schizophrenia. I never had a chance to – No, don’t go there...
I swallowed this realization and put it aside. What else could I do? There was no use even going down that road, because the past was the past and nothing could change it. So now, how to deal with this new reality of being an older woman. A ma’am, no longer a miss.
I don’t mind the way I look in middle age, though after menopause the wrinkles have appeared with the speed of an overnight pimple in untoned muscles in my arms and belly. Oddly enough, I kind of like these wrinkles, I don’t know why. Maybe because they remind me of my grandmother who seemed so very comfortable in her skin (though unhappy for other reasons most of her life). My face is relatively unlined so far but I have to admit I do not like one bit the little piece of skin that droops from the bottom of my jaw and connects to my throat: “turkey neck” we used to call it. Since I am underweight, it is not from being fat. That one is definitely a sign of age! All in all, though, none of this particularly concerns me; it never has.
Middle age is not just about looks, though some would have you believe their appearance is the single most critical issue facing 40 and 50-something women. Down that road are facelifts, and liposuction and eternal dissatisfaction and more lifts and tummy tucks because it all tries to droop again and it’s a never ending battle against ever-marching time and time has the upper hand and always will.
In middle age, that is, after 50 or so, women at least can lay claim to one new freedom: No more periods! No more...well, modesty prevents me from saying what, but you all know what I’m talking about. I know, some mourn this and miss it, but not I. I’m supremely glad never to need to carry a purse again if I don’t want more than my keys and a bankcard.
It is hard to tell how much of my memory problems have always been there (Dr O says I’ve had a terrible memory since she’s known me) or are due to CNS Lyme disease or to ECT. I realize that the middle years sometimes seem to bring with them a diminution of one’s memory, but I’m not so sure this is inevitable or normal. I see no reason why it should be, if one’s blood pressure is maintained at a normal level and one is relatively healthy. Those of us with schizophrenia, however, may have had memory problems for a long time, and I doubt that middle age will change that, unless it happens to bring about a remission of symptoms. In that case, I expect one’s memory would improve.
“You’re a middle-aged woman,” I tell myself. And say it again. “I’m a middle-aged woman.” Somehow it doesn’t sound so terrible anymore. The baby boomer generation is now middle-aged and there’s quite a few of us; we could make or break an election if we voted as a block. One comfort I had when Dr O described what the nurses saw was that for many – and this is why there is such a nursing shortage – 50-something was all too familiar; most were more or less my age.
Bam, bam, bam!...Bam, Bam! "Pammy? Pammy, wake up. It's Ana!" At the first bam! I had startled awake and by the second I was out of bed, fully dressed (I sleep in my clothes -- real clothes not just sweats) and hunting blindly for my glasses. Aha! Found 'em. "I'm coming, Ana, I'm coming!" I grabbed a sweater, for the temperature had fallen overnight, and ran to unlock the door. I glanced at the clock and groaned; it was barely 7:30.
Ana is usually the evening visiting nurse, but on Saturdays she comes in both the morning and the afternoon. Short, competent, especially good at giving the IM injections that I get once a week and compassionate, but also not without an earthy sense of humor, Ana and I get along well. However, she makes certain I swallow the hated Haldol when she's in the kitchen and can see me take it. Same thing this morning.
Still stuporous from my 4:00am Xyrem, I signed her paper and locked the door after she left. Then I cat-napped Eemie, and raced back to my bed, hoping it was still warm.
When I woke at 9:55 the phone was ringing, but this time it was Joe and I was happy to get up. "You want to come up?" I asked him.
"Sure thing. Give me a few minutes."
When he knocked, I had to unlock the door rather than tell him to come on in the way I usually do, because I forgot I'd locked it after Ana left. For that, I got a morning hug. Now I am not at all an affectionate person, not physically. I don't know how to be, one, and two, I basically feel squeamish about touching and being touched by other people. I have learned how to accept a hug from certain people and even to hug back, mechanically but believably. But to Joe I've always said no. Ours has been a completely non-physical relationship because I needed it to be that way. If he wanted more than I gave him, he only joked about it to me, never pushed the issue and accepted what I had to offer.
Then he found another "good" female friend, after years of having me, and he wanted her to be his "girlfriend." At first, this took a load off me, because I felt that she could give him things I couldn't and I wouldn't have to feel guilty. But he found that she was sort of vapid. Despite having graduated from Harvard, she was interested only in style and fashion, and good dining...which also made her expensive, when Joe is the most frugal of men. He would go out with her then come back and come to visit me in order to have "a good conversation," which he clearly missed. Once I joked that she might be his girlfriend but I was first in his heart; he didn't contradict me.
That relationship soon broke up though, with neither party particularly devastated. Joe was the one to end it however, and he soon began to visit me again regularly. Then I was hospitalized; then he was diagnosed; then his old "girlfriend" who is very pushy, started to hone in on him despite having another boyfriend, secretly trying to, well, do something against me and I got upset and told Joe I was jealous. Afterwards, walking down the street, he put his arm around my shoulder, and it felt okay, it felt comforting even...So I didn't recoil or shrug it off the way I would have ordinarily...
So, a hug, then breakfast for me -- yogurt and half a frozen banana (Joe had already eaten). Joe's voice was poor this morning, more difficult to understand than usual, very strained and sludgy. "Music" started to play in the background, but sheer willpower turned it off, or else I was able ignore it. He kept yawning and saying how tired he was, fearful that --yawn -- he might not have enough energy to attend the November technology --yawn -- seminar in Cambridge, MA he was so looking forward to.
His fatigue worried me, as everything about Joe worries me these days. I know I shouldn't assume everything is a dire symptom, but it is hard not to, when there is no professional involved to explain anything or to take over his care.
So when he went to take a nap at 11 in the morning, I read in one of my ALS books about daytime sleepiness and how it can indicate respiratory difficulties, and went into a panic, thinking, Oh no, his tongue is affected and then, the rare occurence, his breathing muscles are going to weaken early rather than late in the disease! I was in terror for hours, waiting for him to wake up. That's when the voices started up for the first time today. Attacking me, calling me names, telling me I had caused Joe's illness... anything they could say to make me feel bad, and with their usual vitriol. I had to ignore them, I couldn't sit there and listen to them all day long, but I did nothing, just brooded and listened and tried to read up on ALS, which only scared me the more.
Finally, I made myself fight back. I concocted a homemade lentil soup to freeze in meal-size batches, so Joe won't have to eat out every night. When that was simmering away, I finally called him and was relieved to hear him sounding somewhat better, more rested, more alert, his speech a little less slurred.
Later: He came up to have some soup just now and wondered aloud if the blood pressure medication or minocycline (experimental drug for ALS but also common antibiotic for acne) could be making him tired. "Joe, I don't know. It could be anything. But it may be the ALS, don't you think?" I prodded him gently, being fairly certain it was. "Weakness feels like fatigue, it is easy to get tired when your muscles are weak."
"Yeah, I think you're right. It could be that. But if I've gotten so tired in one month out of twelve, where will I be in a year?"
"But no one knows where they will be a year from now, Joe. A lot of things could happen before then. So let's not worry about things a year in advance. This past month is all we know about."
Now he has gone down to his apartment to go to sleep and it is 8:40pm and the "music" is playing and the voices are yammering on and on about me and what a stupid f___ I am and I've eaten only yogurt and a banana all day, forgot lunch and supper and am not hungry now. But I need to eat something or I will be weak tomorrow myself, and scared at what I'm doing to myself...So I need to stop here. I will probably continue to write, though in my notebook, for a couple of hours, and then try to read until midnight, when I take the first dose of Xyrem, set the alarm for the second dose at 4am, and go to sleep.
Note: This has been a pretty average day in the Wagner household, except that the topic was Joe's illness a great deal of the time, whereas before we might have spent time inventing something together, which we did a lot, or discussing -- oh, any topic that tickled our fancy.
BEGGAR AT THE FEAST
We've learned to listen, haven't we,
to sounds of silence in subway graffiti,
in a Zen hand clapping,
and spray-painted on the railway trestle
over the Hartford Turnpike, in names
we’ve seen a hundred times
which according to physicists
doesn't matter: a tree falls in the forest
and bodies vibrate -- leaves,
loam, the rush of air filling the space
left behind: sound.
All sound is music sometimes,
to someone, somewhere,
and surely to say the hills are alive with it
is no metaphor,
though much of it we miss --
crickets’ ultrasonic love-talk, for instance;
the wing-friction “singing” we so love
being to them only sonic garbage.
Or the acoustical signature we can’t hear
that summons our cats and dogs
to the door when we’re still two blocks away.
Composer Charles Dodge once
used a computer and synthesizer to record
“the sun playing on the magnetic
field of the earth.” Angelic choir? Music
of the spheres? And what about
the California geneticist
who assigned each nucleotide
a musical value and chanted
the plainsong of our genes?
Near Jupiter, Voyager spaceships
detected musical chirps and whistles,
a tinkling of volcanic bells
from the moon, Io, while in Thailand,
a Buddhist monk proved once and for all
that music is not imaginary,
as if otherwise it might be only acousma --
dissonant, pathological, nonexistent,
the sound, essentially,
of a long. suffering silence...
Thirty-five years ago,
when words came between us,
my father stopped speaking to me,
his lockjaw shunning so brutal, so righteous,
those years I still endured the holidays
I detoured my requests for salt, the gravy,
to the next person down the table,
aware of the lightning-struck air,
the dangerous B flat thrum,
his silence telegraphing: All
visits cancelled. Stop.
Do not come home.
Stop. After this
I was so cold I
could no longer play
or make music.
The earth sings, yes,
but not necessarily for us
which is what mattered yesterday
on my half-mile last lap
when I heard a father bellow
at his small daughter, the caustic scald
pumped clear through a half-open
“Listen, young lady, when I say no,
I mean no. Do you hear me?”
And she, flaming up, scorched, “I hate you!
I hate you!” as if her utterance,
like the bottlenose dolphin’s,
were enough to stun, deafen, kill.
And what, finally,
of my own father’s silence?
Over the relatives’ gossip, from his end
of the Thanksgiving table
where we gathered together
as usual, came his blessings like winter roses --
velvety blooms for the rest of the family,
but only the thorns for me,
on my knees outside the family pale,
forever beyond the kingdom,
and the power.
*Since what I wrote about in this poem, we have completely reconciled, my father and I. There is no longer silence between us, but a lot of good healthy talk, many solid intellectual exchanges. I treasure each visit, which he tries to make once every two weeks. I know I missed him terribly all those years. I don't know if he ever missed me. I think he is just glad we are a full family of six again.