Wednesday, November 7, 2012

ROW 80 WEDNESDAY CHECK IN - "NOT-PD" AWARENESS MONTH



Sometimes, we have to listen to our hearts

Okay, so here we are, day 7 of NaNoWriMo and Day "I Forget" of #ROW80. I have just discovered that today is the 7th day of “Parkinson’s Awareness” month, which I knew nothing about. Because?

I’ve been having one hell of a writer’s block for NaNoWriMo. I know what I need to say, but it’s so goddamned painful, I can’t get there from here.

I’ve also been busy talking to national desks about All Things Political, here in Florida. Said ‘desks’ will remain unnamed for the time being; it seems someone has paid attention to my rantin’ and reasonin’ and I am going to be talking about it post-event, whatever said ‘event’ may be. Jeeze, now I sound like I have a tin foil hat and am channeling aliens on my fillings. Rest assured, I am not. It has to do with a petition I horked up like a hairball and some First Amendment gobbledy-gook trampling I whined about.

But, mainly, where we are is? I am having problems and maybe this is just my inner cry-baby, AGAIN! Like, when is it not? I hurt, I have pain. Yeah, we all do. I feel stupid and shitty and lower than low even talking about this. I’ve had and am having, really the most fabulous life, in spite of my start in life and is spite of the shit I brought down on my own head. I really can’t complain. So now, here I am, whining. Doesn’t it just drive you mad?

So, let me try and put it in non-whine terms. There’s lots of ow. Odd ow; sharp and bizarre, like a thousand and one little imps with pointy implements all over my body and in my organs. All of them, including eyes, ears, ear canals, brains, throat, gums, anyplace that has nerve endings. ANY place. I cannot emphasize that enough. Go wild with your imagination. And not just pains. Different sensations, too. Cold, hot, electricity. Everything, except? Nothing. There are times I’m NOT aware of some of the sensations, if I’m directed distracted (another thing I do; word substitution) by something else, or misdirected. Along with all of this is just plain numbness or tingling. If I injure myself, as I did when I burnt my hand on the grill, another part of my hand hurt, not the burnt part. Confused, much? So, I’m describing physical sensations, not whining here.

Lumped in with the physical, but a cross-over to the mental, are sensory inputs. My hearing is completely fucked up. I have always had absolute pitch and I trained my pitch memory in school. 35 years making a living in music has provided an ear that is more a pain in the ass than a gift. The worst thing in the world is listening to music that is out of tune; even a little bit. The basses in the open here are sharp and the tempo at the beginning is a bit fast (a minor quibble) and beside the point. I can’t understand certain things said or written.

Either words sound muffled and rushed; indistinct and slurred, or they have no meaning when I read them and I must read them again, sometimes several times to make sense of them. Sometimes I must ask people to repeat themselves, to the point where I’m embarrassed, or feel brain-damaged when they repeat ever… so… slow… ly. Gah!

So, ears, skin, they no work like they did. Check. Howz about time? Aah, yes, the old sense of time. Wait. Wait, wait. Sense of time is not a physical sense. So, sense of touch, check. Sense of hearing, oh yes. Did I mention the jungle that is constant in my head? The hooting and hollering? Check. Reminds me of the time I worked the swing shift at IBM. There were only about 20 of us at the time and we were scattered around this huge room in a cube farm.

One dead Friday night, around 11 o’clockish, someone hooted. Someone else, way on the other side of the room “awk-awk,” “eek-eek’ed” in return. Pretty soon, it sounded like a Tarzan movie set. I was, as I always seemed to be in these things, the one responsible engineer, on a call, trying to explain, to the caller why it sounded as if we were in the midst of a Jack Hanna extravaganza. I never muted these calls. Whoever had to listen to my calls for Quality Assurance deserved it. Anyway, I have all of that without the break-fix. Just the sound effects. They come and go.

All of this writin’ and rememberin’ is my way of sayin’ I’m tired. I’m tired and I’m sick and I cannot concentrate with the flair and fervor that I used to display. What took me 45 minutes to do, is now taking me 2 days and endless re-writes and backing ups and editings. I hate it. I have lost my lightning-in-a-bottle pizzazz when writing. Maybe, I never had it and I’m only fooling myself. I think not; I know myself pretty well. But, I’m beginning to hate writing and that is scaring me. So, for now, I will write as it “strikes” me. I will still follow and cheer on and participate in every other way. Admittedly, it hasn’t been much of late. But it’s because of “this,” whatever “this” is. I will still play around in SDBN (Now With Added Moms,) too. I love this, I just don’t want to start hating it and I want to do quality, not quantity.

I have recently come a bit farther in the whole “family saga and what do I think” thing, and as wonderful as I think my mother was, I think she wasn’t in many ways, if you get my drift. That’s my bale to tote and I’ll deal with it. I am not feeling bipolar-y in the psychotic break sense, just depressed. I’ll get over it. Depression is nothing new for me. I’ve dealt with it since I was 16. As long as I don’t stay up for a month and try to drink the Dawn dish soap, I’m good. I think sometimes, we need these little setbacks.

JC is 65 and we just got through what could have been a major health problem. He’s diabetic and he had an infection that ran “hot.” Within 24 hours, his right leg from just above his knee, down to his ankle was  swollen and infected. We initially thought it was due to our new Perm-a-Kitty scratching him; but no. She was the hero. He had and infection from the colonoscopy he had done at the local Medical School last June. They were a bit “rough.” WTF?!?!? Probably bumped something. When kitty kneaded his knee, extant infection, spread like wildfire. Of course, get the medical community to admit that. I have promised this man, that after all of his crappy, horrible life, he will end it in light and laughter, or I will make him wish he were dead, so I need to keep that promise. He’s doing ever so much better, but of course, I have to think up ways to keep him amused. I love him beyond reason. He’s a wonder

The other thing? I need to get a handle on this “PD or not-PD,” so to that end, I am going to be hangin’ with my PD buddies, and trying to support some of the stuff that’s going on. There are studies and I think if I push hard enough, through folks like Jim Adams and his wife, Penny Adams. They are founders of  P.A.N.D.A,, a new group that helps people with PD and other movement disorders. Israel Robledo, YumaBev, Parkinson’s Humor, Parkinson’s National Awareness Month and countless other groups and studies. Maybe one of these groups will listen to me. God knows I would love to participate in one of these Motor Disorder studies, preferably with a psychological, musical slant. 

I’d be a veritable Petri dish of interesting finds. I’m just tired of fighting ever-increasing symptoms and trying to keep abreast with everyone else, with all that's going on. It may not seem much, but let's face it. I'm getting old and I'm frayed around the edges, and probably in the middle, too, if we're honest. My sugar gets out of control and I have seizures now. Those are new. I won't get Medicare until March of next year. Just got the paperwork and entered the last 4 numbers of my SSN for my DOB. I believe in saving time. I'm a dumbass. Shit, now I have to interact with an actual person.

So, look at it this way; this isn’t goodbye, this is see ya… less. I hate indecisiveness. Asperger Syndrome, along with some type of stupid Spock bullshit; ain’t no cure for me.

P.S. I've just been informed by Penny Adams that this is Alzheimers/Dementia and Diabetes Awareness month; my bad. Still ain't no cure. I'm sure I have one of the 3.
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