Sciencing the sh#t out of things….

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Eclipse at near maximum in San Jose, CA–photo credit John Wright Canon 7d thru eclipse glasses as filter, from the Fujitsu Planetarium DeAnza College.

After so many months of hype, we all finally got to experience the two minutes more talked about than the Kentucky Derby–the solar eclipse.

Little Miss and I began on the NASA broadcast from C-SPAN, watching as totality moved through Oregon and Idaho, Nebraska and Missouri, and finally went out when it began to darken outside here in Asheville.

But it was clouds!

Definitely dismayed, we moved around the yard until we could almost see it through our glasses. As clouds tend to do, however, these moved on, and we caught the first third disappearing. It was easy to understand how the ancients, not having the benefit of years of scientific study, felt like the sun was being devoured and might never come back.

Sitting back in a lawn chair, taking in the moment, I experienced so many sensations as the event transpired. The grass was freshly mowed, and it smelled wonderful. We charged my large rose quartz crystal. The quality of the light itself changed, taking on characteristics of bright moonlight, a grayish-blue tint to the scene around us. The temperature dropped, and it definitely darkened. (We were in the 99%, not 100% so we only saw the corona on television.  😦   )

But at the same time, even as that small fingernail crescent slid from the left, to the top, to the right, knowing 99 percent of the sun was blocked– it was still fairly light. It was warm, maybe 70 degrees. Even with that tiniest fraction of the sun. How powerful it must be.

What would happen if the sun really did disappear? Jonathan O’Callaghan has the answer for you here. Let’s not rush for that one.

Overall, it was an exciting experience, and just as exciting to know we were sharing the wonder with literally millions of others across our broad country. Finally something we could all share that didn’t come with a red or blue, black or white, male or female distinction.

Better yet, science predicted it, and we all believed.labkylie5

So if science can be right about this, can’t we give scientists back their funding? Can we support some of their other theories, like global warming and conservation and preservation?  To paraphrase Mark Watney–Let’s science the sh%t out of this world!

 

When they finally grow up–but not really

Regular readers know that I’ve been on quite a journey with my third family–three kids on the spectrum, and all of them a little different even from each other. Well, we crossed a milestone this week–Little Miss turned 18.

Yes, they’re all adults. Under the law.

The two young men are both working part time, and living with their father. Little Miss is entering her second senior year, now in a school with a superior program in terms of directing these kids to find meaningful work. She’s interned over the summer with a local barista, in order to strengthen her position applying for a formal internship at Starbucks this school year.

But I can still hardly let her out of my sight.

She’s very polite, not always aware of stranger danger, and she can’t always handle herself well. I push her to do her own talking at doctor appointments–which works well until she announces that she has “severe depression” after watching too many drug commercials on tv. In reality she’s one of the happiest people I know. Really. That one took some explaining.

Suddenly I see why the teachers were nudging me to get her a guardianship. She is entitled to do whatever, now. She can stay out all night, she can get married, she can….

Huh.

Fortunately she doesn’t want to do any of those things. She has a boyfriend at school, but it’s in name only. They’re both pretty immature. An occasional handholding is sufficient, and I’m surely okay with that.

Gradually I’ve been urging her to do some cooking, some cleaning. Wash her own clothes. She’s pretty responsible around the house. But it’ll be some time before she’s ready to live on her own. If ever. (I’m finally being realistic about this–I always thought she was running behind her peers, but that she would eventually catch up. Now I’m not so sure. But we’ll see.)

Any of you who’ve gone through this, I’m open to suggestions. So many parents of neurotypical kids shoot for 18 and done, or maybe, college and done. What do you do when you really don’t know when “done” will be?

A day in the LEAF

LEAFAsheville, a center for arts and culture in the Southeast, has no shortage of events that enrich the soul. Fortunately, the local arts councils are also generous with these events, providing free tickets to those who could not otherwise afford them. Little Miss and I were lucky enough to score day tickets to the Lake Eden Arts Festival, or LEAF.

The clouds had burst the night before, and some rain lingered into Saturday morning, but it certainly didn’t extinguish the spirits of those on site. When we arrived, the event was in full swing, concert music spilling into the air outside the tents, a poetry slam tearing words from writers’ hearts, the aromas of hot garlic and smoky grills on the breeze. Brave (foolish?) younguns ziplined down into the lake, now a balmy 50 degrees. One bank of the lake was lined with the tents of those staying for the weekend, the other with the festival venue.

Kids ran everywhere, enjoying being kids, many barefoot, even in the squishy mud left from the rain the night before. Arts and crafts booths lined the perimeter, and soon Little Miss sported her own magenta and lilac African mask on a necklace.

The crowd was a burst of colors, so many dressed in flowing fabrics and “hippie” style. I fell in love immediately with the atmosphere, one which pervades Asheville as a whole, but seemed concentrated at the event in one glorious serving.

The headliner for the music scene was Macy Gray; she’s playing today, so we missed her, but we didn’t miss out. Saturday afternoon, we listened to bluegrass artist Sara Watkins, and as the evening wore on we were treated to a show by Cuban R&B/hiphop artist Danay Suarez.  She’s one of LEAF’s teachers in the visiting artists program at local Erwin High School. Though her concert was in Spanish, even her commentary to the audience, it was easy to decipher her meaning once she began to sing. The reggae and jazz beats reached into the soul and lifted it up.

Such a wild and wonderful combination of folks! We, of course, hunted down our family connections with Lucia and Kevin Barnes from Ultimate Ice Cream (did you know they have a CSA for ice cream???), then moved on. I loved the folks with this sign–good advice was free, and “bad” advice, you paid for. Sounds about right.

I’d had a rough weekend physically, so I had my cane and a folding cart with a camp chair, etc. that I finally set up outside the concert tent. Little Miss announced she wasn’t done exploring, so she spent the next few hours going from booth to booth, talking to vendors, learning about sound healing, swinging on some awesome hanging chairs, smelling incense and candles and much more.  I know it may not sound like much to most folks that a 17 year old worked a crowd, but for those who know the autism spectrum, and Little Miss, this means she overcame the noise of the music and crowd, went on her own, spoke with strangers to gather information, and experienced independence–knowing I was in one place where she could find me if she needed anything. Pretty awesome.

Mid-afternoon, LEAF was treated to a parade with a host of performers like those of Imagine Circus from Raleigh, sparkling and dancing in the sun. 

 

A glorious day, in the end, though I hadn’t expected it would be.  Something I’ve been working on, my expectations. When you have debilitating conditions, it’s so easy to slip into a niche where you automatically choose not to go out and do things for fear of increased pain or repercussions or inability. I’m trying now to “expect” that yes, there will be difficulties, but the experience is worth it once all is done.

And the lovely Danay Suarez proved my point. The beats of her music got me to my feet, moved me like a hurricane wind from her island. I didn’t look around to see what people were judging this old, fluffy lady, swaying her hips with one hand on her cane and one on her chair. I was simply the music.

We went to LEAF. Little Miss got to be a real teenager. And I danced. 🙂

 

 

The glory of being nobody

I watched the first episode of the new Black Mirror season, “Nosedive,” which stars Bryce Dallas Howard as a young woman in the not too distant future where every facet of your life is rated by what others think of you on social media. Those who are pleasant and well-liked rate higher; those who don’t simper and cater to people get rated down. Every human transaction comes with a cost, in which you must rate the other person immediately with a click.

In the show, this leads to your privilege in society–whether you can book a certain airline, whether you can enter certain buildings or neighborhoods, what you can buy, and so on.

Of course, there are those who aren’t as interested in “the game,” like theCherry Jones Picture character played by Cherry Jones. I love her characters in general, and this one was no different. No spoilers here, but in reflecting on the episode, I found certain parallels to my own life in recent months. And they totally negate the influence of social media.

I’ve been in my new Asheville home for four months, and it’s been an adjustment. In Pennsylvania, practicing as an attorney is considered quite a lofty profession–in our small county, “Attorney” is a title given to each of us. As in “Attorney Jones.” Like Bishop, or Mayor, or President. I always found it a little humbling, but still, it makes you somebody. Awesome, right?

 

Image result for scale of justiceKind of.

Because that means even if you are running to Wal-Mart, you dress for the chance your clients will see you, or your colleagues, or even the judges. (Although, I noticed that we hardly ever saw the judges in public–they probably had this problem to the Nth degree!) I was never much for make-up anyway, but I know one colleague who would never go out without lipstick. Is it a horrible burden? No, of course not. But it does give me some sympathy for the actress/mom who needs some eggs and has to decide if all the hype will be worth running to the grocery.

With the ease of access to social media–as in practically everyone around you has a camera/video maker available to reveal any of your foibles to the world immediately, the risk of doing anything not considered proper for your position is high and could have real life repercussions, whether it should or not.

Since I’ve been here, though, I’ve been comfortably no one.

This means if I have to run to the Kwik E Mart with sandals and socks (God forbid!) I do. technicalOr if the fibro and other chronic pain is bad enough, I confess I have gone to the local Ingles bra-less. The sweet Southern ladies might find it scandalous–but I don’t know them, and they don’t know me, and as lovely as they might be, I don’t have to worry about their opinion.

(That being said, if you see me on one of those People of Wal-Mart photo shaming walls, please quietly chuckle and then ignore me. I’ll be good with that.)

Freedom.

Sure, I can’t get the kind of service I used to with just a phone call. But I think it’s a good trade-off. I don’t need to be “somebody,” even with my insecurities. I can act on things I want to act on, state my opinions (and get jumped on for them like the average Jane), or even refrain from jumping on the popular bandwagons. I can just be me, doing what I can, day to day, with only myself as arbiter of how important I need to be. So far, it’s working for me. 🙂

What do you think? How much does what others are going to say about you regulate how you speak to or treat themor act where they can see you?

 

 

 

Nothing simple about it

“So, how are you?”

A simple enough question, right? One we hear every day. A common greeting, between casual acquaintances as well as long time friends. It serves as “Hello,” “What’s been happening?” and demonstrates that you care enough about the other person to want to know something about them. As long as they’re well.

imokFor most people, its true that there is a “right” answer.

You mumble something along the lines of “I’m fine,” and you keep walking.

At the courthouse, my usual response was “I’m vertical.” it was true, everyone laughed, and life went on.

It was also the best I could say about my condition.

Because, let’s be honest. No one wants to hear, “My muscles are tense to the point they ache so badly I can hardly think.” Or “My knees are grinding bone on bone and walking up these steps has just about done me in.” Or “Fibro fog combined with my prescriptions makes me wonder how much I’ll remember about my case today.”

(Which is why I finally had to give it up.)

According to WebMD. chronic pain is defined as “pain that lasts longer than six months. It can be mild or excruciating, episodic or continuous, merely inconvenient or totally incapacitating…With chronic pain, signals of pain remain active in the nervous system for months or even years. This can take both a physical and emotional toll on a person.”

Damn skippy.

And every time I choke back the truth, it burns me. Not that I want to dump all my internal chaos on any of the sweet people I meet every day who genuinely care about others. They don’t deserve it.

Sometimes, when I’ve tried something new, and a glimmer of hope appears, I eagerly happyshare the results–a new medicine, a new exercise, the autoimmune diet. But in reality, this usually backfires. people then think I should be cured. Heck, I think I should be cured, too! Unfortunately, the process hasn’t seemed to work that way.

Lyrica worked for about a month. Same with the lidocaine cream. Ditto, the magnesium spray. Physical therapy. Electrotherapy. Darvocet–oh, wait, they pulled that from the market after it had bad side effects. I guess those two years I took it didn’t count. I understand medical marijuana would help–but it’s not legal here. Kratom is about to be named an illegal drug. That leaves me with a combination of muscle relaxers and yes, the dreaded opiates, which actually manages the thing so I can function. But who knows how long I’ll be able to get those, with all the hoopla about those overdosing on them, and the relative lack of attention to the thousands who take them just as prescribed, simply so they can function.

So, yes, friends and neighbors, I’d love to tell you I’m feeling better, back to my old self c3p0again. The chances of that, however, are not so great.

I’ll continue to try to be polite. After all, I’m living in the South now, and Southern ladies…well you know. But if on occasion I actually stop and tell you how I’m feeling–the real truth–please know it means I really like and trust you and that I think you’re safe to hear my honesty. And thank you in advance for letting me let it out. One less thread of stress in my daily blanket of living. Feel free to be honest with me about your own troubles, as well. Even if we can’t stop the pain, at least we can relieve a little of the burden for each other.

So, how are you today? 🙂

 

 

Another new venture!

In preparation what what is likely coming, in terms of dealing with my diagnoses, I’m feeling out possibilities in the event I won’t be able to keep working full time. One of my decisions is to create an Etsy shop with my sister Dianna.

IMGP2258Both of us are “artsy,” me in the crafty sense and her in the art and photography sense, and this will allow us to both expand our reach a little and indulge our deep passion for working in art and hopefully, make some money from it as well.

100_3514Stop by Copper Moon Creatives some time and see what we’ve got–I can’t guarantee exactly what you might find, but I can promise it will be eclectic and wonderful!

 

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