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. 🙂

 

 

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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?

 

 

 

When do you surrender?

I’ve debated writing this post for several weeks. Overall, I was worried it would sound whiny or complaining, and I honestly try not to be like that (at least not too much). Most people have busy lives and problems of their own and don’t have time to invest in my issues.  I’ve finally decided to write it because it might inspire someone else to take control of their life, before it’s too late.

red flowers

red flowers

Fibromyalgia has been a part of my days for about 10 years now , and I’ve written about it from time to time. It’s steadily gotten worse to the point where I felt pretty handicapped. Going to the court house for work was difficult–if I couldn’t get a parking place nearby, I had a hell of a time getting there. I gave up my house for a small apartment with minimal stairs. My marriage suffered and eventually ended. Daily chronic pain was unrelieved by the mild exercise I could do without causing more pain.

My grown children were sympathetic, and we tried to work out a plan where I might go stay with one of them, so I didn’t have to manage a place on my own. Of course, Little Miss would have to go along, and she’s still in school.  And I wouldn’t have a job. Or insurance. And they’re not keen on giving disability for fibro. You know, since it’s not one of those “real” diseases.

Besides, why should any of that be imposed on one of my girls? Not their fault. They’ve got their own lives.

So, nothing worked out. Better yet, this year I’ve had a steady stream of diagnoses. Both knees’ cartilage totally destroyed. Torn retinas causing flashes in night vision. Sleep apnea. Neck and back arthritis. (Getting old just isn’t pretty, folks.)

Overwhelmed, I started wishing that whatever was wrong with me would just escalate and end me before the summer came and I had to make a decision. If I was dead, I wouldn’t have to deal with it any more…the day-long pain, the things I couldn’t do for myself any more, the knowledge that there would likely be more and more things like that. Sure, I could keep taking two Vicodin a day and muscle relaxers, and more and more anti-inflammatories that were eating away at my liver.  It wouldn’t make the pain vanish, but made it tolerable most days.

This is from someone who has a reasonable income that provides for our needs, an education, transportation, food on the table and a roof overhead. I can’t even imagine how this goes for someone who doesn’t have these things.

autoimmuneAnd then in late August, I got the topper–gout/arthritis and rheumatoid arthritis. For those who don’t know, the latter is an autoimmune disease. My body had become so dense with inflammation, that it was attacking itself, no longer able to differentiate what was good and bad. That’s why my ribs ache. That’s why my knees are shot. Probably the retinas, too. I’d done it to myself.

That could have been the end.

Instead, I found myself galvanized into action. I’m still not sure what the difference was, but finding myself under official attack must have kicked my competitive nature into gear.  I started reading about RA and some of the treatments out there. I consulted with some friends about it, what worked for them, what didn’t. One of my daughters had a family that had gone on the paleo diet to help with my granddaughter’s thyroid issues, and she extended a hand. My sister Shawna had recently received a spinal arthritis dx and she was dealing with the same thing. I signed up for a monthly healing seminar. I have support.

I could do this.

The dietary changes to reduce inflammation seemed like the best first step. The next day, I went to the grocery store, armed with the AIP list of foods to eat and foods to avoid, and I’ve followed that for over six weeks now. Is it a bitch to eat no dairy or eggs, no beans, no nightshades (tomatoes, peppers, eggplant, potatoes), no grains, no nuts or nut products, oils, etc, ? You betcha.

But my pain has dropped about 75%. Yes. I said 75%. My energy is up about 50%. I might take two Vicodin a week, instead of two a day, and some weeks not even that. I’m in physical therapy and try to walk on the days my knees don’t hurt–and there are those days. On cold rainy days, I used to curl up on the couch, unable to move. Now those days are just like any other day. I’m winning the battle, for now, anyway.

That’s all I can do. One day, then the next day, then the next.

Because I’ve got a lot more days out there, and without all the suffering, I know I’ll really enjoy them. I finally scored an appointment with a rheumatologist at the Cleveland Clinic for next month, so new options will become available. There may come a time when I have to give in, but I haven’t reached it yet, not with this new lease on life. Supporting those with chronic pain is hard. But knowing someone else’s outstretched hand is available– preferably holding a couple of spoons!–is priceless.