Yes, it's possible to be hurting and happy

A few minutes ago, Dick said to me, "It's good to see you smiling." I said to him, "It's amazing. I'm in a lot of pain and I'm in a great mood."

He jokingly responded, "Well, if you can package that, you've got something to sell."

Maybe I do have something to sell, but I'm giving it away free. That's right, folks. Step right up and get it free. Today only! Free tips on happiness! Get them while they last!

What I could sell is a book, but it's a book that has been written many times before, and by people who are far more qualified than me (or is it I?) You see? I need an editor or a good book on grammar.

Sheesh. I'm really putting off getting to the point, aren't I? This subject is just too big, and I've been having some trouble writing lately. I used to be perfectly fine with my beating around the bush style of writing, but in spite of my being in a good mood, my lack of ability to distill my thoughts into terse sound bites is starting to annoy me. I know what I feel, but it's almost pre-verbal. That makes it quite hard to put into words.

If you've been following my blog, you know I have chronic pain problems, and suffer from moderate-to-severe depression. Right now, I can't even imagine being depressed. Everything feels perfectly fine. But it isn't.

Last week, I started to tell someone that one reason I was in a good mood is that I was feeling better physically. Then I realized that simply wasn't true. Not only is it not true, I'm feeling physically worse than I was when I was depressed. Every single depressive episode I've had in my adult life has been preceded by an increase in pain or a new ailment. So, why aren't I depressed?

That question makes it sound like I want to be. I can assure you that I do not.

Veering off course for a moment, the other day I was thinking about how most people are quite attached to their problems. It's not a criticism, but an observation. Our neuroses and quirks are part of our personalities, or so we think. Or perhaps we don't think that, but resistance to change is a major impediment for most folks. Somewhere inside, we think we'd disappear without the problems that make us who were are, even if they cause us pain.

Now, my physical pain has not disappeared, but my attitude towards it has changed. I finally stopped trying to run away from it. I don't like it, but I no longer rebel against it. This is not the same thing as complacency. I go to physical therapy, do the exercises they tell me to do, and spend quite a bit of time attending to my own care. But, I'm not unhappy while doing these things. Nor am I particularly bothered when, like earlier today, I discover that there is something I simply can't do. Once, I would have been very upset, maybe even cried a bit, when I saw that I was "disabled."

Today, as I limped and lurched into the house after foolishly carrying a heavy bucket of maple sap, I sat down, tried to massage my feet, discovered my thumbs hurt too much to do that, and then pulled on a pair of tighter compression socks. That helped. I had a cup of tea and relaxed for a while before doing some work.

Why am I re-telling this boring little bit of my day? Well, once, all of the above minor events would have caused me grief, but today they did not. It was the same yesterday, the day before, and the day before that, for the last month or so.

Something in me has essentially shifted. Every time I think a negative thought, a positive one pops up to follow it. At the same time, I tend not to see any thought as actually "negative" or "positive." They're just thoughts. It's the meaning I give them that makes them toxic or not. Thinking "I can't do a lot of things I used to do" has no inherent feeling attached to it.

You may think that's not true. How could one not feel bad about that? Well, I say, why should I feel bad? What good would it do me? None. Absolutely none at all. There's plenty I can still do. More than enough for a couple of lifetimes, in fact. Why should I add to my own suffering?

It all sounds very logical, but emotions don't often listen to logic. Yet, I've been practicing refuting my own bad logic, and this refutation has finally become a habit. It's as good for me as exercise, maybe even better.

There's so many things that one could be upset about. Every day is filled with problems and annoyances. I seem to have stopped seeing the cup as half empty. But, believe me, it's taken a very long time to get to this point. I generally don't even like to use the word "very", but not only have I done so, I've italicized it, for I don't want to give anyone the impression that any of this attitude changing stuff is easy. It's not. When I wrote I have practiced, I meant it. It takes practice, just like learning an instrument, or learning to read. You can't snap your fingers and change - poof! - and sorry, no, you can't just pop a pill and have everything be all right. Antidepressants don't stop the bills from landing in your mailbox, though I'm sure many wish they would.

It takes work to get over one's problems. Lots of it. It also takes faith. Not faith in something larger than oneself, but faith in the idea that one can change. Unfortunately, from what I can tell, a good majority of people think that if you're over 21 to 30 years of age, it's too late to change a thing. This is simply not so. We change every single day, whether we like it or not. When does it stop? When we die.

So, we can change simply by breathing, or we can participate in our lives more fully. Old thinking patterns are hard to break, but if I can quit smoking, I can do anything. Really. And so can you.

I'll continue this lecture another time. I want to do some knitting.

Image note: John James Audubon "Common Blue Bird" (probably an Eastern Bluebird)

On the old tv show, "Laugh-in", someone used to say "May the bluebird of happiness fly up your nose." I have no idea why.

Good Morning, Mr. Pain

As many of you know, I've been living with chronic pain for a long time. In the last couple of months, I've been doing quite well with it. It's not been better, but my attitude has been. I've been more accepting and self-caring.

I just deleted a re-telling of my morning thus far. You don't need to hear a blow-by-blow. It's boring.

Suffice it to say, I'm overwhelmed. My pain is about an 8 on the pain scale, which is high, but my ability to deal with it is close to zero. I need to talk to someone, but there's no one to talk to right now, so blogging is what I'm doing. It helps, somehow. I also need to see a doctor, and part of my feeling of overwhelm is due to the impersonal way in which the doctor's office responded to my call. I'm sure they get lots of emotional people in pain calling first thing in the morning, especially on a Monday.

Yesterday morning I thought I might need to go the emergency room. I was feeling what I call "I-can't-stand-itis." I could stand it, and I did with aplomb. Armed with three sizes of bandages and three types of soothing creams and gels, Dick and went to watch a curling tournament. It was exciting, and got my mind off how I was feeling. From "I can't stand it" to simply enjoying myself is a big leap, one that seems impossible to make, but pain is a slithery thing.

This morning, I had planned on doing schoolwork and taking care of my neighbor's kids from 3:30 to 9:30. I can't imagine doing either. So, here I am, just waiting for a phone call from the doc's office and hoping it'll come soon (fat chance). I need to make arrangements if I can't take care of those kids. I'm projecting into the future about my schoolwork - "If I keep feeling like this, I'll never finish." All of the machinations in my mind are the big problem, not the pain.

I'm sure if I had a friend over and I was engaged in a meaty discussion or smelling an array of perfume, I'd be feeling much better. If I didn't have obligations, I could just attend to myself. This tells me that I should just attend to myself and forget about the rest. That is the world of chronic, oppressive pain. Living on that slim edge between total disability and taking care of oneself is difficult.

I write this not for pity, but for therapy, and also, with a bit of hope that others who struggle in this way might feel better when reading it. Most of the time, my life is fine, pain or no pain. I had said pain was a slithery thing. It's a slippery thing, a thing that morphs and constantly changes. It's hold on a person varies with a stealthy cruelty. One moment everything is fine. The next, screaming pain tears through a leg, settles down to a dull ache. The mind is confused and wants to both run away and be hypervigilant at the same time. It's exhausting.

I called my morning pain "Mister", and then thought how pain is often dressed in leather, latex and high heels. Not my pain. This is no "she." Mr. Pain is really devoid of gender. And I realize, the minute I see this pain as "not me", it gets much worse. The minute I push away something that is part of myself, it cries out "I'm you! Don't push me away!" Okay, pain, I'll try to accept you and nurture you. I know you need some help. Maybe pain is my baby, and I wouldn't let my baby keep crying out of need without some attention.

Ah, the heating pad feels lovely. Now, what shall I do while I wait for the doctor's call? And should I be the wretched squeaky wheel who keeps calling the doctor's office. I know how much they hate patients who do that, but still. . .

I just don't know. After all this time, I just don't know.

Image note: I wanted use a painting from the Pain Exhibit, but the "save" function has been disabled. Instead, here's the cover of Bob Flanagan's book. He turned his lifelong struggle with Cystic Fibrosis into performance art and wound up leading the longest life of anyone with CF.

No more bare feet

Yesterday I received a prescription for orthotic shoes and inserts. Afterwards, I went for a fitting. The choice was better than I expected. My idea of orthotic shoes are the ones my grandmother used to wear - as heavy as a bowling ball, black, and ugly. Most of the orthotic shoes are indeed quite ugly, but some of them are accceptably plain and don't look like something one needs a prescription for.

I saw that there were slippers near the wall of shoes and asked if they were special. "Oh, you can't wear those", said the orthotics expert.* "Well, what should I wear in the house?" I asked, quite innocently. He answered, "the shoes." "Shoes? In the house?" I was appalled, not because I park my shoes at the door, but he seemed so deadly serious.

Then he went on to explain to me just how serious my foot conditions are, and that going barefoot, even on the beach, was now a thing of the past. I should wear lace-up shoes at all times, and if I want to put my feet up on my sofa, I'll just have to unlace my shoes. What will I do in homes (or a Buddhist meditation hall) where no shoes are allowed? I have no idea. Perhaps there are orthotic slippers out there somewhere for me, but he was adamant that they were not for me. I looked at the fleece lined slip-ons with longing.

Being told that I should never go barefoot again feels like a turning point in my life. It's not that I'll never feel the sensation of grass and sand beneath my feet, because I can certainly take off my shoes when I sit down. But somehow, that's different. The truth is, I haven't been able to walk barefoot since last Spring, when my right foot started bothering me. Since then, both my feet have gotten progressively worse, and now, even walking in the best shoes I've got makes my feet hurt so much that they wake me up at night.

So, what's the "turning point" feeling all about? It's the end of youth. Sure, I know my youth ended quite a while ago now, but this feels different. The restrictions, ever mounting, on what I eat, wear on my feet, how much I walk, what kind of exercise I can do, the amount of energy I expend in a day. . .well, this is the antithesis of youth. Youth, almost by definition, is carefree.

As I bid the past adieu, I am trying to accept what is. Today I missed the poetry workshop at Treetop Zen Center, for I woke up in the middle of the night with a terrible bout of GERD and, in the wee hours of the morning, a lot of inflammation and pain. I slept through my alarm clock and when I finally was awake enough to get up, the workshop was just starting, 45 minutes away. Even if it was down the street, I felt too awful to go. The urge to cry washed over me, but it passed as I thought about all the things I could do here at home. I can acknowledge my feelings of loss, but I don't have to let them ruin my day. Yeah, I feel like crap, but I can read, knit, write this entry, listen to some new audiobooks I just put into iTunes, and even have a nap later if need be. Perhaps I needed a day off, even as I wanted to attend the workshop. I'm beginning to listen to my body very carefully. I used to fight what my body told me it needed, as if it was something separate from myself.

So, here I am with two aching feet. Today I am looking forward to my orthotic shoes! I'm wondering what I'll do with all the lovely high heels that are sitting in my closet. Anyone have a size 8 foot? There are shoes that need good homes!

Photo note: I guess I won't be wearing these 19th century boots. I do have a pair of boots that are similar (in black). I can't bear the thought of parting with them, though I haven't worn them in at least ten years. That's a bad case of attachment!

*What he's actually called is beyond me, and I should know, considering I'm studying medical transcription. But, since I am studying medical transcription, and am taking a break at the moment, I refuse to look up the term.

Open letter to doctors and the D.E.A.

Warning: If you are easily upset, worrisome, or offended, do not read this.

Dear Doctors in the U.S.A. and the Drug Enforcement Agency,

Please explain something to me. Why do you deny pain medication to people in pain? Yes, I know you are afraid we may become addicted. Let me ask you a question: SO WHAT?

Next week, I'm seeing a new doctor. I was told that their office doesn't prescribe pain medication. Think about that for a moment. Isn't that crazy? Well, it's not, because the DEA has made it very difficult for doctors to prescribe pain medication. My old doctor told me that this was a big problem. They have to register with the DEA. They have to report patients that they think may be misusing or selling their medication to others. Doctors did not set out in life to become cops. My old doctor hated being in this position. And most doctors feel the same, so that some have decided to opt out of prescribing pain medication entirely.

Honestly, until today, I thought the case for not prescribing because of addiction, at least, was a good one. I've changed my mind. Doctors tell patients not to worry about taking loads of medications for life. Pills for depression, anxiety, high blood pressure, high cholesterol, etc., ad infinitum. Well, if it's for life, how come that's not an addiction? Almost everything can be controlled to some extent through lifestyle changes, but no, only pain seems to be singled out for the big lecture. Listen, I used to do everything one is supposed to to manage pain. I meditate. I get enough rest. I used to do yoga and excercise. Why did I stop? Too much pain. I don't like not doing yoga and exercising. Did I choose that? No. So, you who judge, I'm sorry, but fuck you.

And what if it is an addiction? Is it wrong to want something to relieve pain? Let me tell you this: there's a doctor around these parts who does colonoscopies and he undermedicates his patients. I had a colonoscopy from this guy and I was screaming for mercy. You would, too. I met a few other people who'd had the same experience. What did the doctor say about this? "Well, if you have a high tolerance for pain medication, you'll have to withstand some pain."

Ah, now we're being punished! Like it isn't bad enough living with chronic pain. This is sadistic, truly.

Every day I have to think, "Can I tolerate this?" Okay, I have times when the pain is background noise. That's most of the time, and I can deal with it. But it isn't now, and if I want some relief, here's what I have to do: I have to go to an emergency room and make a fuss. I can't just state how I feel. I have to prove I'm not just a drug addict. The hospitals and doctors call people who do this chronically, "drug seekers." I'm wondering just how many of these people just might be people in pain. Not mental pain, but physical pain. We are not getting treated properly. Period. I read the boards on fibromyalgia and arthritis sites. Noone is being treated properly. I won't say it again, I promise.

Please, DEA people, why do you make such a problem for us? Don't you have better things to do, like keeping drug dealers from shooting people or something?

I'm spending my day trying to keep calm. Laying on heating pads, distracting myself. I can't concentrate much. I can't even knit, something I love doing. Writing seems possible, for some reason. Maybe that's 'cause there's already a dialogue in my mind. I dunno. I'm feeling kind of stupid today. Pain does that.

I'm really quite angry. I've been brainwashed, y'know. I used to take painkillers on a regular schedule and I stopped because I thought "I am a drug addict." Then I tried to get some help to deal with going off of them and coping with chronic pain, but I was laughed at! Really, my old doctor and another doctor thought it was a regular laugh riot that I thought I was a drug addict. I was told, "Do you realize just how much of that stuff other people take?!" So, I didn't get any help. I wound up faking that i took too much to get some help, but that wound up as a disaster, 'cause they put me on Seboxyn and it made me feel horrible. I wasn't a drug addict after all, 'cause if I was the Seboxyn would have worked. It didn't.

So, I screwed myself royally. Now I'm on the drug seekers list. I am pissed off. No, I'm enraged.

I'll admit I tried some marijuana the other day. Y'know, all these people in pain use pot to help them out, so I figured I'd try it. It sure didn't work for me. I suspected as much, but I had to try. It made it worse, far worse. Everything that's background noise came screaming to the fore. What kind of pot do you folks who smoke medical marijuana smoke??!! I'm not sure I believe you.

Why the hell are drugs illegal anyway? Could someone please explain this one to me? Isn't it a social problem? Didn't prohibition prove that prohibiting substances only turns people into criminals and increase crime? You think people would be shooting each other in the streets if it weren't for illegal drugs? It's totally ridiculous.

It's about morals. I don't recall any passage in the bible that said "thou shall not take an opiate but thou can take a tylenol, which is far worse for your health and causes liver damage."

And lastly, people show up at doctors like Kevorkian's doors because they can't stand the pain. So, it's better to kill yourself than get some pain relief?

This society is insane. I'm sorry. I'm angry. I'm really, really angry.

Image note: American Opium Smokers-Interior of a New York Opium Den," drawn by J. W. Alexander from Harper's Weekly, 1881. Is this what people are afraid of? For your edification, most people who are in pain will have more energy to do things, not less, if properly medicated. I'd sure get up from my heating pads if I was. I recall two summers ago I could do gardening. Last summer, I could not. So, you tell me which is more "moral."

I know I'm a practicing Buddhist, but sometimes one has to speak truth to power, and that might entail some cursing. Cursing, I believe, is not breaking any vows. If I'm wrong, tell me.

Miasma

I had thought I was not up to writing anything today. I then wrote a response to an e-mail. It was rather interesting, watching sentences form in front of my eyes. I wouldn't have believed I could string a thought together.

Seeing it was possible to form a coherent thought was reassuring. I'm in quite a bit of pain. Pain blots out so much, makes one's world very small. I've used the word "miasma" to describe how I feel. Here's the dictionary definition:

mi·as·ma
1. A noxious atmosphere or influence: "The family affection, the family expectations, seemed to permeate the atmosphere . . . like a coiling miasma" Louis Auchincloss.
2. a. A poisonous atmosphere formerly thought to rise from swamps and putrid matter and cause disease.
b. A thick vaporous atmosphere or emanation: wreathed in a miasma of cigarette smoke.
[Greek, pollution, stain, from miainein, to pollute.]

That defintion both hits the mark and doesn't. It's interesting, though (to me) how when I feel quite bad, I have a feeling of contagion, even if I'm not contagious. I just received a call, "How are you feeling?" "Like crap." "I guess you don't want a visitor then." "No. I'd love some company", was my response.

Afterwards, I thought perhaps I should have said "stay away." Why would anyone want to spend time with someone who emanates a poisonous atmosphere? Well, I hope I don't do that. I'm easily distracted and while probably unable to tell jokes today, will easily laugh.

People do keep away from those who are sick and in pain. It makes sense that we would prefer to be with happy, healthy folks. So, us folks who aren't, perhaps need to prove that we can keep our miasma under wraps and be cheerful when people visit. I will try!

I had intended to post this only to write this simple thought: If you're feeling lousy, unable to do much of anything, figure out something that you can do that proves you're not in as bad shape as you think. That's what writing seems to do for me. I felt completely unable to think or form a sentence. I was wrong, and it was very good to find that out. If I had just gone back to sleep and not responded to my e-mail, I would not have discovered that there's still a functioning part of me.

Painting note: I just stumbled upon this artist, Julie Heffernan. This painting is entitled "Self Portrait as Dead Meat II" (2006). For more about her, click here. Harper's magazine seems to have a number of articles about her, but one needs to have a paid subscription to read them. Drats.I am intrigued. I am generally turned off my any art that has surrealism or fantastical elements in it. There is something in this women's work that draws me in deeply. I'd like to talk to her.

The color of pain and beauty

According to the American Chronic Pain Association website, I am "non-functioning". I agree.

Is this blog entry a cry for help? Probably.

I'm scared, and that might be worse than being in pain. Hell, I can stand a little or even a lot of pain. But, from reading various articles on line, I am bewildered by the lack of care I am getting, though there are so many people without appropriate care that I shouldn't have a scrap of bewilderment in me.

I have areas of complete numbness in addition to pain. This sounds bizarre, but I can stick a fork into my right foot and not feel a thing. There are other places where I am totally numb, too, but I'm not going to sit here sticking sharp objects into my skin to check them out.

According to what I have just read on line, I have at least three conditions that call for an immediate consultation with a neurologist. Yet, I don't have a doctor's appointment for 13 days, and I know that this appointment is only to arrange for a referral to another doctor. Just knowing this is frightening to me. I'm living one hour at a time, in essence, and there are a lot of hours until the 22nd of December.

Pain renders me stupid. I have no idea what to do. I can see that my physical inactivity is not good for me, but there are so many movements that cause such excruciating pain that I really can't motivate myself to get up off of this sofa and away from my heating pads.

By the way, the judgment of "non-functioning" was the "Quality of Life" assessment. I don't agree that I'm a ZERO on quality of life, but by their standards, I am.

I have nothing further to say (noted later: fat chance of that). I promised there'd be no more diary-like entries. Okay, I'm nearly desperate, so I broke my word. If there's anyone out there with any suggestions, I'll take them. Please don't suggest that I consider euthenasia.

I wanted to find a contemporary artist's work to grace the top of this post. I found an interesting site called the Pain Exhibit. It would not allow me to copy any of the work.

It's snowing outside and is quite beautiful. I watched the birds for a while. The juncos, which were written about so well (as per usual) on Turn Outward yesterday, were a lovely sight in the snow, as they always are. The dark gray of these birds is a magnificent color. It could easily be described as black, but it is not. I find this color quite rich. I note as I look around the room I am in, that I've painted the trim the very same color. This gray is the color of impending storms, slate, dusk, dust, and the tip of my cat's tail. Maybe I'll just post a square of gray. It is also the color of my mood, if you remove the beauty. I am moving in and out of the black hole of despair. The juncos, on the other hand, even if they are dark gray, are the opposite of despair, though who knows what goes on in their little brains. They are plumped up today, looking much bigger than they are. The temperature may have risen to a whopping 18 degrees from the -6 of last night, but the wind is blowing. It amazes me that the birds can survive in this. I saw some goldfinches, which I do not remember ever seeing at this time of year. I just flashed on these little birds wearing tiny down jackets, but hey, they are covered in down, now that I think of it. Duh.

Image note: Cy Twombly Unititled #19 Sorry, I don't know the year. Always loved what I think of his "blackboard paintings". Don't know why. Analysis is hopeless today.

An oddly great day

Both a preface and an addendum: I wrote this on Friday and took it down sometime over the weekend. I felt badly that I hadn't thanked a number of people who have graced my life in person. I also thought "no more diary-like entries." Now I'm re-posting it, without any changes:

Today is my birthday. I woke up, had a shower, and Dick drove me to the emergency room. On the way there, I noticed I had a lottery scratch ticket in my bag. Once in a while I buy a bingo card, because they take some time to do, and I have a good time calling out the numbers if I'm alone or in my head if I'm not (okay, sometimes I do this when I'm not alone). I have never won my two bucks back. Don't get all excited yet. I only won ten dollars. But it seemed like a good sign.

The hospital waiting room was blissfully empty. I only waited five minutes before I was seen. I stepped out to use the restroom, and when I came back, the doctor was there. He said something like "you seem quite mobile" in an accusatory voice. I was immediately on edge. The night before, I was in agony, but I knew I could get through it, and honestly, emergency rooms are usually nightmares after midnight. I'd prefer to suffer at home.

I didn't feel all that bad this morning, comparatively, but I knew I was getting worse, not better, and as I don't have a doctor's appointment until the 22nd, it was back to the ER.

Around here, and I suppose probably all over this country, people go to the ER with headaches and backaches, just to get drugs. So, I suppose seeing someone who said they were in so much pain looked suspicious.

But, this particular doctor was listening. I explained what had been going and he took me seriously. He seemed positive that he knew what the problem was. He wasn't going to slough me off on someone else. He said he was going to give me an injection in my spine. I asked, "Will that hurt?" "Not to me", he answered. I had to laugh. I said, "When I was a tattooist, I used to say that to everyone." Then he asked me if I knew this old tattooist, who had died years ago, which I did, and we talked about him for a while. It occurred to me later that this guy was smart enough to realize that a person who's heavily tattooed would not complain of so much pain if they didn't mean it (well, unless they were looking for drugs). But I wasn't. I was looking for help. The pain and numbness patterns all told a story that he understood, because, for once, someone was really paying attention.

I got my shot ("I guess you must be really scared of needles") and as the medication spread into my spine, the pain went down a couple of notches, even in places where I can't remember ever not having pain. I have had this pain for most of my life, and I have never had appropriate medical attention. I got used to it. I did a lot of yoga. I stopped bothering with doctors. But then, it got so bad I couldn't do any physical activity.

You don't need to hear the whole story, do you?

The thing is, I had a lovely day. I really did. After we got out of the ER, Dick and I went to a real hole-in-the-wall Lebanese restaurant where the food wasn't dumbed down for Yankees. I felt like I had left the country for an hour. I had a falafel and hummus sandwich on home-made pita bread. It was spicey and tasted like there might be an entire head of garlic in it.

Afterwards, I got a haircut. I looked a wreck; pale, bags under my eyes, exhausted. My hair even looked exhausted. I've dyed it one too many times and it's been completely robbed of any luster. No hope for it at all. In the past, I would have just shaved my head (see last post) but I felt like doing something new. A real "style". Quite frankly, it's awful. I'll never be able to do whatever the hairdresser did with that huge round brush and a blow dryer. Eh, it's only hair. I had a good time having someone wash my hair with some insanely fruity shampoo and being around folks who all seemed so animated. I said that the shampoo smelled nice. "Do you want to purchase some?" "No, it doesn't match my perfume" I was exhausted when we were through. I suppose staring in the mirror at my lusterless hair and tired face wore me out. And, I had been at the ER for almost three hours. But, I had to stop and buy a hairbrush.

We made one last stop to for birdseed and suet and headed home.

My mailbox was filled with goodies; a bottle of Annick Goutal Encens Flamboyant and another free book from Amazon, "The Housekeeper and the Professor" by Yoko Ogawa. This looks like it's going to be the first of four books I've received that I can actually read. The rest have been duds. An awful lot of junk is published, and I suspect an awful lot of good writing is not. Who are these editors?

We ate avocados and sourdough bread for dinner. I adore avocados, and they seem almost decadent when it's twenty degrees outside. What a pleasure.

I discovered dear TMC put up a birthday wish for the entire world wide web to see. This touched me greatly. I have met many wonderful people on the Web. I read and hear so much about the "bad side" of the Web, but you can find something bad in everything. I want to give my thanks for all of you I've met here. You are all special, and have enriched my life. Hyperbole? Perhaps, but tonight I think not.

And with that, my day ends. An odd day, not one that is the picture postcard of what a birthday might be like, but it was a very beautiful day in its way. And I want to thank my partner, Dick, for being the kind human being that he is. He gave me a card with a photo of two young girls playing dress up. Inside, besides the personal stuff, he wrote, "I'm the one on the right." The personal stuff is personal. Yes, some things still are.

Painting note: Jan Steen The Doctor's Visit 1626

Addendum: I also wore my brand new replacement bra. But I'll save that story for another post.

Tough luck (I can't come up with a better title)

What a dilemma - On the one hand, I want to be honest about my life and to have an honest conversation with you, whoever you are. On the other hand, I know people don't like grumpy and miserable people. And if I start posting too many depressing entries, it's likely you won't come back for more. Who wants to hear it?

But if was to start censoring myself in order to provide readers with a sanitized and more fun aspect of me, I might as well go the whole hog, scrap this blog, and start a new one which would certainly have a bigger readership. Here's some possibilities: One Happy Thought for the Day, Happy Project of the Day, Everything's Interesting But Not Everything Will Cheer you Up, Pain and Depression: So What?

That's enough of that. Y'know, sometimes I want to do this. Most of the "let's get happy in spite of ________ (put your malady in the blank) websites and blogs have an awful lot of Christian advice, or are written by people like the guy who wrote "Chicken Soup for the Soul", who I don't think ever had more than two seconds of self-doubt in his life. I'm not even giving that book a link. Isn't he rich enough yet?

So, I was thinking about Susan Sontag, and how, despite being an extraordinary thinker and even writing "Illness as Metaphor" could not cope with her cancer and mortality.

Then I realized that'd I never actually read the book, which is a huge oversight. I've read many of her essays. Her "On Photography" is an extraordinary book.

After checking in on Amazon, I discover that Sontag had serious issues with the idea that we cause our own illnesses. Of couse, there's a direct correlation between smoking cigarettes and lung cancer, a high-sugar diet and diabetes and things like that. She doesn't disagree. But, as I noticed earlier today, when thinking "since I am unable to attend my meditation retreat and am feeling so badly, there must be something that I am supposed to be learning from all this pain", I was desperately trying to impose meaning on something where there probably is none. In that process, I fall prey to guilt. I must have done something wrong or not paid enough attention to something. Or at least, I have to learn the lesson of being able to be okay with not being able to function some of the time.

The last bit is true, but I don't believe that karma or something in the universe imposed itself on my body just to teach me a lesson.

I'm sorry, but I just can't believe in things like this, though it's easy to. My mother wasn't killed by a guy running a red light for any reason other than she was killed by someone running a red light. I learned much from the aftermath of that event, but it didn't happen so I could.

Those who believe in an afterlife can feel better because those who die are now "at peace." I'm happy they believe that. It's quite comforting.

I suppose all I'm saying is that accidents happen, and sometimes come in the form of non-accidents. Luck comes in the form of the bad, as well as the good. It's not even luck - it's just life. A hell of a lot of it is a crapshoot.

Painting note: Francisco Goya
Duel with Cudgels 1819-23
My inner dialogue.

Lust

You see a picture of a bed. The title of the post is lust.

And what do I lust after? That bed. Nothing risque here. Move along, nothing to see!

Not that medical insurance makes any sense, but in the long run, it would save on doctor's visits and medication if people who have arthritis, fibromyalgia and similar ailments were helped with the expense of having an appropriate bed. But, then again, there's the fact that I can get an eye exam, but I have to pay for my glasses. I can understand that insurance companies don't want to pay for Armani frames, but if one can't function without glasses, isn't it a medical neccessity?

I suppose if everyone had a good bed, then the pharmaceutical companies wouldn't be selling as much Ambien and whatever else they promote for insomnia and pain.

I don't think it's a conspiracy, but it could be. Maybe we will discover that Big Pharma and Big Mattress are in bed together (no pun intended, but there it is). I bought a supposedly excellent mattress six years ago and after one year it was kaput.

It's awful, but I look at my bed and think "There's my personal hell." One reason I stay up late is so I can put off getting up in the morning. It doesn't make sense, 'cause no matter what time I go to sleep, I have to get up the next day, but these are the kinds of nonsensical things that people do when they're hurting. I'm not the only one. I've heard it all at fibromyalgia support groups. That's why I only went to two meetings.

When I did a google search for wool mattresses, I found an awful lot about "the ultimate luxury" embedded in between the information on why wool mattresses are healthy and comfortable. It occurs to me that the original target audience (pain sufferers) probably weren't supporting these companies well enough to keep them in business. I discovered that some upscale hotels now have rooms with these beds for clients who need them (and I'd bet that a night in one of these rooms costs nearly as much as a mattress).

Well, we all know that rich people can afford to take better care of their health. Before I moved to Maine, I thought dentures were only for elderly people. Not so! My rude awakening was when I was having a conversation with a girl in her twenties who had sparkling white teeth. I complimented her on them; they were so sparkly and nice. She said, "Oh, you can have them, too. All you need to do is have your teeth pulled!" Gulp. Toothless and twenty-something.

I grew up surrounded by wealthy people. My family moved to one of wealthiest communities in America when I was about seven years old. Before that, we lived in a housing project, where I was a fairly happy kid who loved to jump rope, read, draw and explore. After we moved, everything changed. Suddenly, I was in a world I didn't understand. I was teased for wearing the wrong clothes, or the same dress more than once in a week. I was confused by all sorts of things. Nobody came out into the street to play. The women I thought were mothers turned out to be maids. Silly me thought little Jane Doe had a black mommy who wore a funny outfit every day!

Oh, how I came to hate that town and everything I thought it stood for - greed, lording your good fortune over others, treating people badly simply because they're less fortunate than you. . . .this is one subject that I can't write about at all. Not with any coherency, that is.

And this post started with my desire for a mattress. My lust. Or is it covetousness? Whatever. I just want. Really, I should be grateful for the riches I have. A roof over my head, a car, plenty of food, a computer with the world at my fingertips! And my sofa is pretty darned comfortable to sleep on. See, I have a sofa! Some people live in tin shacks and sleep on dirt floors. Lots of people do.

Maybe I am much more of a typical American than I think I am.

Addendum: This is one of those times I'm thinking "should I delete this post?" Am I a sniveling whiner? In my line of sight is a magazine with a picture of Michelle Obama on the cover. Seeing her makes me think of how hard some people work in order to achieve. And their work and achievements aren't for nothing. They're for their children, their communities and, sometimes, for the world.

In the town in which I grew up, I saw many people who had attained wealth but who had little education. They only had the desire to make money and then, once that was achieved (though that work is never finished, it seems), they liked to show it off. People who couldn't pull themselves up by their bootstraps were losers and deserved their lot.

As much as I intellectually disagree with this idea, it is something I can't quite shake off. I do not believe that we are all born equal. Some of us are born into poverty. Some are born into wealth. Many talents are inherent. So are the things we consider deficits. Some kids can never learn to read or write and others will go on to get advanced degrees in physics, write or paint a masterpiece, or rob a grocery store.

My society tells me that I'm a failure at life. If I can't afford that bed in the picture, I should work harder. I've lead an odd life, I'd say, with ups and downs financially. Mostly downs.

I'm embarassed when confronted (in my own mind) with the success of my relatives and people I've known since I was young. I have more than a few talents. Why haven't I flourished?

I think back to a summer when I had a booth at the Full Circle Fair in Blue Hill, Maine (not your ordinary fair). I wove tartans at the time, beautiful heathered tartans made of Maine wool. Not only were my blankets beautiful and well-woven, but I had tags, brochures and all sorts of materials that were painstakingly designed and, yes, lovely. I can say with no false modesty that I had a great product and a great presentation. I sold nothing. Zero.

Down the aisle from me was another weaver, who was selling plain white blankets with a thin stripe of color in them. They were perfectly fine blankets. They had a brochure that was perfectly fine, too. But, here's the thing: they were taking orders for these $300 lap blankets like you wouldn't believe. I kept going over there and eavesdropping. The wait time they were projecting to buyers kept going up and up as the weekend went by. I got more depressed as I listened.

There was no sense in this. Objectively, I had a nicer product. I was nice and friendly (though I may been glum by Sunday late afternoon). In all likelihood, the other weaver's success started with a piece of luck: a single buyer who brought friends, a group of maybe-buyers who all arrived at once or the fact that it was a particularly hot weekend and the plain white blankets looked refreshing in the sun.

Now, I did become quite depressed afterwards. I was sure that the reason I lost money was that there is something inherently wrong with me. My childhood told me that I was a loser and life has given me plenty of proof that this is indeed true.

I fight against this idea every single day. It's a hard fight, that's for sure.

Phew. Long addendum!

Good days, bad days

I woke up at 3:00am in terrible pain. It was one of those "I feel like I've been thrown out of a moving car" nights.

I may sound a bit blithe about this, but that's because I have fibromyalgia, a syndrome/disease/something that I am not sure I "believe" in. At 3:00am this morning, I believed.

Today is ruined, at least as far as plans go, of which I had a few, and one was fairly important.

Why am I writing this? Why am I typing, anyway, when all my fingers hurt so much?

Perhaps it's only to say that I have fibromyalgia, right in the midst of a flare-up, to remind myself that it's real, and to tell anyone reading this that if they know anyone who has it, that it's exhausting and causes most people to miss appointments, obligations and occasionally be dead tired and cranky. That person, like myself, may have stopped mentioning it years ago. Unfortunately, others tend to think I'm just somewhat flakey about appointments, obligations and my house cleaning. Or just think I'm flakey.

Actually, I'm one of those people who's a bit neurotic about always being on time, always meeting deadlines early and what I call "chore equity" around the household. Having fibromyalgia has been a challenge to my attachment to being so "good". I sometimes wonder if there's some correlation. I feel guilt-ridden and self-judging on days like this. I wind up acting like a bad mother to myself with messages like "You really don't feel that bad. Just get out of bed". Well, I did, and I can say with certainty, I'm no good for anything but going back to bed or some light reading.

But,I felt like writing a bit. Now, I will put my hands under the faucet and let cold water run over them, pick a graphic for this post, and be done.

Image note: I thought, "yeah, good day for some dark, brooding image." Nah. I love fabric. Why not cheer myself up? See more here. And, it's a good day for "Good Day":

Last night's headache

Note: I wrote this last night, but Blogger was down (as was I). Reading it now, I think, "Why post it?", but thought it was an important topic, though I need to re-address it in more depth at some point. . .

I've had chronic headaches since I was a kid. This year, I finally seemed to be rid of the chronic-ness (yeah, yeah, not a word, but I've got a headache). Interesting how the medical terminology is chronic versus acute. Acute sounds way worse, doesn't it?

Right now I have an acute headache. Why am I even writing? Ah well. I haven't posted for days and feel a bit of obligation to.

I also wanted to see if I could, and if so, what I would write. My face is killing me. It's really more of a faceache than a headache. My sinuses are in agony. Objectifying my sinuses as "not me" helps, not that it makes much sense, but again, I have a good excuse for not making sense.

I could not do anything today. My ability to concentrate is, um. . .impaired.

When I think of the days when I felt like this every single day for days or weeks on end I can't imagine how I lived.

I remember one time I was in a cab in New York City and my head was hurting so badly I started weeping. The sounds of the city were just too much to stand. I even remember finding the smell of the city too much.

That's a migraine in a nutshell. Smell, sound, light. . .even the smallest amount - too much.

Another time I started to cry from a headache was when I was lying in a tent on a beautiful summer night. It was quiet and smelled lovely. I felt so cheated, really, by a headache, yet again, imposing on my enjoyment of life.

The thing about any chronic pain is not the pain, I think, but the sense of helplessness and one's reaction. If I didn't have to concentrate on anything today, I suppose it would have been fine on some level. It is bearable.

That night in the woods, I felt more angry than in pain and that just makes the pain worse. Thinking about how others react to my, yet again, not feeling well makes it all the worse.

It's the things that are not the pain that make it worse.

Things like beating up on myself for not being up to doing something or not having as much energy as a person much older than myself. Things like thinking I should not be so done in by a simple headache (or whatever the current pain issue is).

When I speak to others who have chronic pain it's always this stuff that's the kicker. The pain seems always to be secondary.

I remember when I had a boss who talked proudly about never taking a sick day. He told me about digging clams when he had a broken foot. Is that right?

Most of us are taught that we shouldn't give in to pain, that if we have down time because of it, well, we're just weak. I am weak. By all standards, I am weak.

I disagree, but that disagreement is totally intellectual, just like my views on the beauty standard.

This weekend, when I saw people I hadn't seen in years, I felt ashamed at how much weight I'd put on. And then I judged myself for thinking this way.

And then to add insult to injury, I imagined conversations these people would have, saying things like "Boy, she sure doesn't take care of herself". Are they that petty? How mean-spirited of me for thinking this!

But it makes sense. I grew up hearing this stuff all the time. People would come over the house and the minute they left the judgments would start. So-and-so got fat. So-and-so's husband is probably having an affair. So-and-so's kids aren't doing well in school, did you hear?

Hmmm. From a headache to seeing how the poor modeling of parents has infiltrated my self-talk (as if I didn't know that!)

When I see people like Michelle and Barack Obama, I think, "They are so healthy!" I don't think folks give much thought to how much health and energy play a role in how "successful" people are.

I feel a bit guilty, or something akin to that, for there are others who have far worse health problems than I who manage them with aplomb. And then there are some who don't, so I must remember it's a continuum. I also must remember that it's hard to know what's going on inside of those we don't know well.

I had a dear friend who passed away a few years ago. She had always been sick. Sometimes when I complained about my health to her I'd feel like a complete idiot and major league whiner (which I actually am, in my opinion). She'd say to me, "Pain is pain. Comparing is stupid." Then we'd play cards and tell bad jokes.

Well, pain is pain. Sometimes it just is. Sometimes it's unbearable. It's always a lesson of some sort.