Tuesday, November 27, 2012


For the next day, you can download the ebook of Angst, Anger, Love, Hope for free! FREE!

To get your free copy, simply go to the website of JMS Books, register, and check out! As long as the item you are "buying" has a cost of $0.00, you will not be asked for any credit card information.

Sweet, huh?

Friday, September 14, 2012

My Encounter with an Angry Lady, an Anonymous Nice Neighbor, and the Police

Oh, good LORD.

When my son and I got back to our apartment complex tonight, there was no parking at our building (never is; in fact, it's one of only two buildings in the whole place that didn't get additional parking this year when we were sold to the "luxury" apt. management company). We parked at [Y] Building, in the lot we almost always use. What we did differently, however, was pull into the handicapped spot. I have a placard, but I've never used the spot here; I've never seen it available, frankly.

I joked to my son, "Ooh, I bet whoever uses that spot is going to be pissed. I just hope they don't pull into it before looking."

That might have been easier.

I realized later in the evening that I'd forgotten my phone in the car. What greeted me as I went to retrieve it? An angry, angry lady sitting on the steps of [Y] Building, demanding to know who I was and telling me I had no right to use her spot. Not only that, she then proceeded to tell me I should only park at [Z] Building. To my great amusement, a man's voice came out of the darkness, calling, "There IS no parking here!"

As I was standing there trying to reason with the woman, her daughter-in-law joined her. In addition to parroting her mother-in-law's words, she added a few acrobatic (but not obscene) gesticulations into the mix and asked loudly, "Who was that guy talking earlier? Is he your man?"

"Um...no," I said. I was internally debating the wisdom of telling her I don't own anyone when I saw three police officers walking toward our imbalanced little conflict. (Hey, our township doesn't get much action; what can I say?) One of the cops said the incident was called in by a man, so I was left to wonder if the call was made by my unseen not-my-man parking ally. One officer started listening to the angry lady, and I caught the eye of one of the others. "Hey," I said, "the only reason I'm here is I realized I forgot my phone in the car. I came out to get it and this lady started yelling at me."

Because a large part of angry lady's argument had been based around her belief that because she requested a handicapped spot in the lot, that handicapped spot belonged to her and only her, I asked the cop if the spot could be designated for one person only. "Not if it doesn't say so on the sign," he said. He took my name, phone number, and apartment number, and said, "Okay, you can get your phone and head back in. Have a good night." "Thanks!" I replied, and did just that.

So...anyone placing any bets on whether I'll have any damage to my car in the morning? I can't say that I can cover those bets, mind you; I might have to get a new tire or some such.

UPDATE: Car is fine!

Saturday, September 8, 2012

Of Psychology and Civil Rights

This entry is going to start off a bit vague. I apologize for that, but there are times a writer just has to go against everything he or she has learned about style and refuse to offer up examples. Some of my thoughts are better left in my head, but their very existence gives rise to questions I'd like to explore.

Sometimes I find myself drawn between two very, very different interpretations of one event or another. (Events that have an indirect effect on my life or the lives of those I love and are not merely matters of curiosity.) In such a situation, to believe one interpretation seems utterly insane, and yet to believe the other takes a force of will that I do not seem to have. I do not want to believe things that are untrue, especially if believing those things marks me as crazy. I almost panic at the very thought.

That panic, however, is generally relieved if I find myself indulging my more unconventional thoughts. I have sometimes thought that the peace that comes with such acquiescence is an indication that I have chosen the correct belief.

However - I then wonder if this same sense of peace comes to someone who hears voices when he or she decides to stop fighting them and listen. I wonder if it is simply a magnified sense of the relief I feel when I give in to my compulsion to check the locks just one more time before I go to bed. All one needs to do is read the news to know that instinct can be a dangerous guide.

Tonight I found myself wondering if this processing dilemma is common to most. I think of those who actively protest and fight against LGBT rights as bigots - hateful, hateful bigots. When they imagine a world in which we all share the same rights, do they want to let go of their hate and allow the dream to wash over them, do they feel nothing but fear, or do they do neither?

I know that the hateful views themselves are insane, but I would like to know if the bigots who spew them feel either peace or white-knuckled resistance when they do so.

Wednesday, September 5, 2012

Yeah, Yeah, More Med Stuff on My Mind - But I THINK This Covers Most of It

I wasn't going to post this as a blog, but I posted this (with a few differences) to a Facebook myotonia group and it seemed to be appreciated. My Facebook page is private, so putting the piece here makes it easier for those who would like to share it to do so.

Much of what I post on here and on Facebook concerns invisible illnesses. And I'm always a bit worried that posting makes me looks whiny or bitchy. Problem is, if I qualify those posts, I run the risk of coming off as defensive, which might only serve to increase the whiny buzz around my words. So I've decided to do a great bit of my qualifying in this essay and then continue as usual, and people can think what they may.

What's my real emotion?

Anger. And not any - I repeat any - kind of "woe is me" or "it's unfair" anger. I'm angry because the medical system's default position should be to believe the patient, and instead it is to doubt the emotional health of the patient who can't be immediately diagnosed.

All three of the terrific doctors I ended up with (internist, diagnostic neurologist, clinical neurologist) listened to me. None of the three have big egos. And clearly, none were afraid to keep looking when an answer wasn't immediately apparent. But it took me years (and years) to find them. I've been told that my muscles may never loosen to the same baseline as those of a patient who was treated earlier. And there are thousands upon thousands of people going through the same broken system I had to go through. I'm angry about that, so I try to do what little I can to spread the word that this is happening.

I'm also angry because those who have been diagnosed with what are called "invisible" illnesses (RA, lupus, this, you get the idea) continue to have to deal with rudeness from the general public. I've heard absolute horror stories from some people.

In general, I've been lucky - I really haven't had to deal with more than looks, which means it's possible I've simply been wrong in my interpretations (though I don't think I have). And I've been shy and made it a point to pass as normal even when doing so has left me in a lot of pain, sometimes for days (I'm thinking here of the times I stood on a crowded bus or train when I should have simply asked one person or another to give up the handicapped seat).

Just because I'm angry about a couple of issues does not mean I am an angry person in general. My anger connected to this disorder is quite compartmentalized, and - I hope - channeled in a way that can do some good. My life is wonderful in many ways.

What is it that I actually have? I look okay when you see me.

I have a form of potassium-aggravated myotonia (also called sodium-channel myotonia) called either acetazolamide-responsive myotonia or atypical myotonia congenita. It's okay to just refer to it as myotonia - the symptoms of many myotonias overlap anyway. It means my muscles are very slow to relax.

It causes:
muscle tightness
pain (about five different kinds, one of which has been constant for years and which I will never have an adequate way of describing)

It also causes, to varying degrees of alarm or discomfort:
fasciculation (muscle fiber twitching)
muscle cramping

When one muscle group (my shoulder is the worst) tightens, all the muscle groups on that side of my body tighten. I've broken my upper molars because of the tightness in my jaw - a direct result of the tightness in my shoulder.

The more I do, the tighter I get. If you were to see me more, my problems would become more and more evident to you. One reason is that you'd see things I normally make it a point to hide from you; another is that it would mean I was more active, which would mean a definite increase in the problems themselves.

This disorder doesn't progress, but my muscles have gotten tighter over the years because I had no way to help them relax.

Myotonia won't kill me, unless I happen to pitch backward down the stairs or something.

Have I tried [fill in the blank here]?


Really, yes. There is no way my specialist (one the top specialists in these disorders in the world) would have me on the meds he has me on if meditation, acupuncture, exercise, massage, or any over-the-counter supplement or medication worked. Really. I'm on some serious stuff, and my doctor isn't in any pharmaceutical company's pocket. Trust me on this.

I know you mean well, but when you make suggestions of any kind, it implies one of three things: that I haven't done all I can, that I'm not bright enough to research, or that my disorder isn't serious enough to warrant the treatment that has been prescribed. And I know that is not your intention.

So, this is the stuff that's on my mind today. And now I'm putting it out of my mind. I've been typing too long and now I'm clenching my teeth. Thanks for listening.


Friday, July 20, 2012

I Didn't Forget, Really

A lot of people have asked me how my plans for the electronic journal are coming along. The plans are coming along great. But the launch is now tentatively set for the first quarter of 2013 rather than any time in 2012.

There are a couple of reasons for this, but the biggest is both personal and professional. I enjoy writing and editing in about equal measure, and I'm well aware that editing a journal will leave little, if any, time for writing. So I'm trying to finish both a personal writing goal and a professional project to which I have committed myself. The personal goal will not delay the launch; I'd rather set the project aside after my self-imposed deadline than allow myself to be distracted with it for any longer length of time. The other project has a definite deadline within the year (it's actually coming up rather quickly).

So, that's where the journal stands right now. I'll update if there are further changes.

Saturday, April 7, 2012

A Laugh and a Word of Regard

Just a couple of short notes:

*Yesterday, my husband headed off to work without a set of keys he needed. He buzzed to ask me to let him in our security door, and I looked around for the source of the ringing phone, wondering if he'd forgotten his cell and trying to remember his ringtone.

Since I hadn't responded to the buzzer, he called me. I saw it was him calling and responded to his greeting with, "Hey. Did you forget your phone?"

My son thinks I flaked out because I'd been up all night writing. I had been up all night writing, so yeah, let's go with that. I like that.

*We went to the seder at our UU fellowship tonight. Wonderful community, wonderful food, wonderful time in general.

Saturday, February 25, 2012

Again? Still? Another Invisible Illness and Society Post

I'm feeling a little - just a little - disheartened right now. I just saw a Facebook comment by a friend that said, "...all the handicapped seats were taken by people who weren't handicapped..." I almost responded, but my relationship with this poster is a little too close for me to want to risk a fight, and not close enough to comfortably say what I'd like and know it won't be seen as instigating an argument. (I don't fear a fight, but fighting is emotionally draining and very often pointless - especially on a Facebook or forum thread, on which there are witnesses and posters therefore feel the need to trump one another for the sake of ego.)

But the pervasiveness of this myth that physical handicaps will always be visibly apparent does bother me. Many people with invisible illnesses are treated quite rudely by uninformed members of the general public. Thankfully, I have only had to deal with overt rudeness a couple of times, aside from the treatment I dealt with from some members of the medical community while I was searching for a diagnosis.

One of those times involved, as so many of these incidents seem to, the use of a handicapped parking space. My son and I pulled up to a store in the pouring rain, and I used my placard to park. I didn't exactly make a mad dash into the store when we exited the car, but it is fair to say I moved at a fair clip.

Oooh, was some lady on the sidewalk giving me the stink eye and the pursed lips! She looked as though she'd just downed a shot of vinegar.

A few minutes later, while shopping, I relayed what I'd seen to my son. Then we turned a corner and saw the lady walking past! I had guessed she'd been leaving the store, not entering, but I suppose I shouldn't have made assumptions, either. She'd surely heard everything I'd said, and in truth, I was not sorry.

I had not said anything rude or insulting; I'd merely recounted the incident and made some comment about my ability to walk upon entering a store having nothing to do with my ability to walk upon leaving a store - which is true.

In fact, before I was taking any useful medication, my husband had at one point gently - gently - asked me to stop helping with the grocery shopping. Though I moved at a normal speed upon arrival, my movements inside a store became slower and slower as time passed. Without browsing or doing anything other than shopping from my list, I was adding a great deal of time to our outings.

You know what? I don't have or use a wheelchair or a cane. I don't have or use orthotics or prosthetics. A lot of times I limp, but a lot of times I don't. I look like a whole lot of other 40-year-old women. And I look handicapped.

Friday, February 10, 2012

What Is It All For?

That post title isn't an angst-ridden lament. No, it's a real question I've been thinking about since reading a lot (a lot) of articles and blog posts about electronic submission fees and the comments that follow them. I won't rehash my arguments for the fees here; this post is completely tangential.

Some comments I've read have raised some really good questions, questions that anyone considering launching a literary journal should be able to answer:

What is the nature of the relationship between journal and submitter?
Is the relationship, as some assert, that of journal entirely dependent upon submitter (because the journal must have material to print, which comes from submitters), or is the relationship one of journal as producer and submitter as customer (because the journal offers opportunities to submitters who want those opportunities)? I've read both these arguments. I haven't, however, seen many people respond with the suggestion that both of these views are too extreme.

The relationship between journal and submitter is symbiotic. Journals need material, and those who submit to them need outlets. Remember, submitters are writers. And writers who submit do so because we want our work to be read. Some of the more foolhardy among us will say aloud that we want to earn money from our writing.* Of course journals need writers to attract readers. And of course writers need journals for exactly the same reason.

Why do we need another literary journal?
There are many, many literary journals already. Why do we need another? I suppose there are those who will say that any propagation of the written word has value in a society many fear is becoming less literate. I can't really agree with this; I fear some publications do more harm than good where grammatical influence is concerned.

Good short stories, though, and good poetry? Those we should propagate. Those cannot fail to move, educate, and entertain.

More specifically, though, I believe we need the journal I am trying to create. The most important question any publisher should be able to answer is Why do we need this literary journal?

Why do we need this literary journal?
There are several qualities I enjoy in journals as both a reader and a writer. Many journals have some of these qualities, but very few journals have a great many of them. I want to create a journal that incorporates as many of these qualities as possible. I believe great art and great accessibility belong together, and that good writers should be financially compensated. To further explain what I'd like to do could be interpreted as tacitly criticizing the way things are being done, and that's not what I want to do at all. I simply want to provide an alternative aesthetic, one perhaps reminiscent of one more commonly seen a generation ago.

I can answer the preceding questions, but that does not mean my answers will satisfy the great majority of readers or writers. What it does mean is that I believe, passionately, that what I'm doing has value. And I believe that anything of value has a place in the world.

*Don't think it's foolhardy? Then you either haven't experienced the helpful cautionary lectures and derisive laughter that many of us have, or you have an unbelievably strong sense of self. And you also write fiction. On a message board devoted to fiction, those who submit to journals that don't pay are often helpfully informed of their ignorance. Bring up money on a poetry board, and you're likely to be taken to task as not writing for the right reason, the love of it. Argue rationally enough and you'll eventually see those who schooled you qualifying their answers: "Well, you write for the love of it. You submit for pay." Really? You don't say!

Thursday, February 9, 2012

This Should Frustrate Me Far Less than It Does

Full disclosure: Within the next few months, I'll be launching an ad-free online literary journal that pays its writers. Postal mail submissions will be available and free; electronic submissions will require a small submission fee.

My gripe: Mention reading fees, even with caveats, in a crowd of writers, and they'll likely chase you with pitchforks. I don't know how embedded the resistance is; I do know that the only people chiming in vocally are pretty damn self righteous.

1. If a journal offers a free postal mail option, an electronic option is a convenience. The electronic option is handy and, yes, commonplace, but all a journal needs to offer to receive submissions is a postal address. Therefore, it is within a journal's purview whether or not to charge for electronic submissions.

2. You cannot sensibly compare these fees to the fees charged by unscrupulous book agents and vanity publishers. The book agents don't actually place any books with publishers; they just live off the money they've conned out of you. The vanity presses are happy to take your money at either the beginning or the end of the publishing process, and they will give you books in return - but you'll almost certainly end up the poorer and remain largely unread.

Most of the magazines and journals charging fees for electronic submissions are promising writers only an alternative to postal mailings, and they are delivering on those promises. No such journal or magazine has a pay-to-publish model. Paying to submit electronically does not give any writer an edge. Furthermore, charging the fees allows a journal with no other income stream (such as a free online journal that does not accept advertising) to pay its writers. (I've twice read comments on other sites asking why writers who'd been rejected would want to help pay writers who had not. Frankly, that seems illogical and short-sighted to me. Do writers who have been rejected by the New Yorker stop purchasing the magazine? Okay, some might - but I think most good writers want to see good magazines and journals become and remain successful.)

3. If a journal is going to pay, it has to have a way of making money itself. It is unrealistic to think that anyone will buy a subscription to an online zine. And let's face it, unless a site is Facebook or Twitter or similarly popular, it can't sell ad space for anything approaching professional print rates.

4. Even if the fees become standard for good, paying zines, there will always be plenty of online zines for those who don't want to pay the fees. They'll be small, run on sites that are not eye pleasing or user friendly, and they won't pay - basically, they'll be the same as many online lit journals to which many of us are already submitting.

Tuesday, January 3, 2012

And More Good News This Evening

The January issue of Contemporary American Voices is out.

And who would have thought that when I finally started writing creative pieces about the myotonia, my first complaint would be about patients instead of doctors? Certainly not me!

Flash Piece in Squawk Back

I'm very excited to have a piece of flash fiction in this week's issue of Squawk Back.

I usually have quite a hard time placing my fiction; it seems to be a little too odd for outlets looking for conventional work, and not quite odd enough for outlets looking for the unconventional. That's a broad generalization, I know, but it's the simplest way to explain the situation in a paragraph. A recent rejection slip for a nontraditional piece that could certainly not be described as warm (not this story, but it's had its share) should help illustrate the point:

I found this story a very pleasant read, and it kept me interested all the way through. However, I don't think it's quite right for [name redacted], as it doesn't have that "cold" feel to it that I'm seeking. As such I will not be using it in the magazine, though I'm sure you'll be able to find a home for this elsewhere.

I'm thrilled to be starting the new year off right.