I just realized (or remembered, now I think about it) Kindle has a visual quotation feature. This one refers to Tahiti, “paradise” to the early sailors who landed there and found a different and less restrictive society, not so much after a few visits.
I found this posted without attribution on the Patients Like Me site and repeat it without comment.
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I’d still like to hear you talk about yours, too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. that’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, it applies to everything. That’s what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to “get my mind off of it”, may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder”. Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can’t be put off or forgotten just because I’m somewhere, or I’m right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the “normalcy” of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.
Thank you.
On returning to my inn, I could not but reflect on the singular gift of the poet; to be able thus to spread the magic of his mind over the very face of nature; to give to things and places a charm and character not their own, and to turn this “working-day world” into a perfect fairy land. He is indeed the true enchanter, whose spell operates, not upon the senses, but upon the imagination and the heart. . . . I had surveyed the landscape through the prism of poetry, which tinged every object with the hues of the rainbow.
Washington Irving, “Stratford-on-Avon”
During the annual Black Friday shopping event, Americans spend money they don’t have on things they don’t need and that don’t make them happy or happier, just poorer and unsatisfied. Then, like Charlie Brown, they wonder what happened to the spirit of Christmas.
Diane Schirf
I passed some time in Poets Corner, which occupies an end of one of the transepts or cross aisles of the abbey. The monuments are generally simple; for the lives of literary men afford no striking themes for the sculptor. Shakespeare and Addison have statues erected to their memories; but the greater part have busts, medallions, and sometimes mere inscriptions. Notwithstanding the simplicity of these memorials, I have always observed that the visitors to the abbey remained longest about them. A kinder and fonder feeling takes place of that cold curiosity or vague admiration with which they gaze on the splendid monuments of the great and the heroic. They linger about these as about the tombs of friends and companions; for indeed there is something of companionship between the author and the reader. Other men are known to posterity only through the medium of history, which is continually growing faint and obscure: but the intercourse between the author and his fellow-men is ever new, active, and immediate. He has lived for them more than for himself; he has sacrificed surrounding enjoyments, and shut himself up from the delights of social life, that he might the more intimately commune with distant minds and distant ages. Well may the world cherish his renown; for it has been purchased, not by deeds of violence and blood, but by the diligent dispensation of pleasure. Well may posterity be grateful to his memory; for he has left it an inheritance, not of empty names and sounding actions, but whole treasures of wisdom, bright gems of thought, and golden veins of language.
Washington Irving, “Westminster Abbey”
College female 1: . . . a concept for class. That’s how Jamba Juice was created.
College female 2: Oh, wow.
This is a book that every single parent needs to read.
Book review
[That’s single as in every parent, not as in every unmarried parent.]
DUDE, WE WERE ON FIRE!
Chicago History Museum headline
My love for you is like a shiny heart-shaped metaphor about the sea.
Metra sign
Take it off vibrate. I don’t pay for that.
Women speaking into her mobile phone
We have swine flu masks! We have Hallmark cards for Mom!
Electronic sign at Walgreens
Some students purge or starve so they can binge drink.
RedEye
Offered by the Illinois Tollway at oases: The popular Captain Tollway coloring book
Willow! Montana!
Dad calling his children
Elderly couple at the bus stop discussing the man’s choice of gym shoes:
Woman: Is there any reason you made that weird decision?
Man: If it aggravates you, that’s reason enough.
Dedicated to the enlightenment of the human spirit
Window sign at Roosevelt University
NO PUBLIC RESTROOMS
If I major in econ. and work on Wall Street, I could be your sugar mama!
College student on mobile phone in elevator
From St. Mawr by D. H. Lawrence.
As far as people go, my heart is quite broken. As far as people go, I don’t want any more. I can’t stand any more. What heart I ever had for it — for life with people — is quite broken. I want to be alone, mother: with you here, and Phoenix perhaps to look after horses and drive a car. But I want to be by myself, really.
I’m convinced that ever since men and women were men and women, people who took things seriously, and had time for it, got their hearts broken. Haven’t I had mine broken? It’s as sure as having your virginity broken: and it amounts to about as much. It’s a beginning rather than an end.
I’ve got to live for something that matters, way down in me. And I think sex would matter to my very soul, if it was really sacred. But cheap sex kills me . . . I dislike [men] because they’re not men enough: babies, and playboys, and poor things showing off all the time, even to themselves. I don’t say I’m any better. I only wish, with all my soul, that some men were bigger and stronger and deeper than I am . . . No, mother, of this I am convinced: either my taking a man shall have a meaning and a mystery that penetrates my very soul, or I will keep to myself . . . And to [the spirit that is wild], my sex is deep and sacred, deeper than I am, with a deep nature aware deep down of my sex.
He understood that shivering better now. He was the conduit, the open window, by which, on rare occasions, she felt the ventus Dei. In the center of her sensuality, she was God’s plaything.
John Updike, “Love Song, for a Moog Synthesizer”
Seems like nothing ever comes to no good up on Choctaw Ridge,
Bobbie Gentry, “Ode to Billie Joe”
And now Billy Joe MacAllister’s jumped off the Tallahatchie Bridge.
When you mention poetry to most people, you will invoke for them images of dead bards and the English majors who love them, depressed teenagers, and teenagers in teenaged love. There may be a surreptitiously rolled eye or two as well. Poetry is not for the masses, or so they think.
Of course that isn’t true. Poetry is integrated into our everyday lives through popular music. In many if not most cases, song lyrics are poems accompanied by music. Lyrics and arrangements that resonate with the public become hits; those that don’t languish as filler tracks.
I was reminded of the poetic nature of popular music when I heard Bobbie Gentry’s “Ode to Billie Joe” on BBC Manchester this week. The combination of the mysterious lyrics, lush arrangement, and rough vocals vaulted the song to a No. 1 spot in 1967. Later, as a nostalgia craze for the 1960s and ’70s started to take root, a movie version (with one possible solution revealed) was released.
Gentry has said that she doesn’t know what Billy Jo (the spelling in the lyrics) and the girl threw off the Tallahatchie Bridge. This seems likely to me; it’s also not clear, for example, that Margaret Mitchell knew any more about the future of Rhett and Scarlett than her readers. “Tomorrow is another day” tells us only that Scarlett isn’t defeated and that all things are possible.
Gentry’s allusions leave a number of possibilities open, none of them right or wrong. She has said that the lyrics focus on the cold, nonchalant way the girl’s family discusses Billy Joe’s suicide. Gentry captures the essence of small-town life and gossip. With the Vietnam War and anti-war protests dominating the news, the family turns its attention to something local that each of them knows something about. Papa says Billy Joe “never had a lick of sense”; Brother says he talked to Billy Joe after church last Sunday night and ran into him at the sawmill; and Mama mentions that the new preacher saw a girl who looked a lot like her daughter with Billy Joe, throwing something off the bridge. All of these references, and the casual ones to what seems to be a tragic suicide, are interspersed with “pass the biscuits, please” and “I’ll have another piece of apple pie,” as though to make the point that life goes on in its most mundane ways without room or time for emotions.
Gentry’s lyrics unveil the underlying story. Brother says, “You know, it don’t seem right,” indicating that Billy Joe didn’t seem suicidal. Now there are two mysteries: What did he (and the girl) throw off the bridge, and why did he suddenly kill himself? Are the two events related? How?
The girl’s identity does not seem to be part of the mystery. She is quiet during the conversation and doesn’t even comment when Brother mentions a prank played on her. and her mother notices her lack of appetite. If she is the girl who was with Billy Joe, she keeps it to herself and doesn’t want anyone to know. Her family, consciously or unconsciously, add to her feelings of grief and possibly guilt.
It’s not my point to resolve the questions, especially since the writer has offered no answers. Much of the song’s interest lies in interpreting the clues. Does Mama emphasize “young” when talking about the new preacher to make a point to the girl about his availability as an alternative to Billy Joe? What about Choctaw Ridge is associated with “no good”? Is it a poor area, a teen hangout, or a spot with an evil past? Is the family engaging in idle gossip, or are they colluding to make a point to the girl? There are no set answers, nor should there be.
What makes “Ode to Billie Joe” poetic is the spare but effective way in which the story is told. Nothing is stated, leaving much to be inferred. By the end, through only a few details, the listener (or reader) can see how the family might represent the decline of small-town farming America. With the father dead, Brother abandons the farm for his wife and their new store in town, and the mother and daughter are left with their grief for their respective losses.
Gentry doesn’t describe Choctaw Ridge or the Tallahatchie Bridge, but we don’t need to know what they look like for them to serve as the song’s emotional centers. The rhythm of the names, combined with their repetition, sears them into our memories. Both places are haunted by the girl who picks flowers on the ridge to throw off the bridge and by the emotions associated with an unexplained tragedy.
To experience the richness of life, you must first survive its sadness.
Diane Schirf
Did I really write this?