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
fatigue
clumsiness
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:
tremor
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]?

Yes.

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.


Tracy