Tag Archives: art

Dizzying

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I’ve had several break-throughs this past week or so, and it’s almost like I fell into a rabbit hole and came out a different version of myself.

  1. I realized that in response to the structure of my family, I chose, at the age of six, to be the person who would be perfect, and who would make everything okay for everyone. Did you make a decision that hurt my feelings? I won’t tell you, it would make you uncomfortable, it’s okay. Do you have inadequate social skills and monopolize conversations? It’s okay, I will suffer through rather than call you on it. There are a million examples, and I’m in the process of setting myself free. It’s scary but also liberating when say, I’m on the phone with my MIL and she is detailing the various possible locations of the dining table in RVs and I think, “It is not my problem that you are inept at conversation.” OMG IT’S NOT MY PROBLEM. I interrupt the moment she takes a breath, tell her the things that I think are news on our end, tell her that we are thinking of her and that breakfast is ready so I must go. I’m not, ever again, sitting down to a cold meal because someone wanted to tell me how the weather has been everyday this month.
  2. I read this post and saw myself therein. I need to pace myself on a long term basis. This means that my activity level should not spike and bottom out, but remain more constant. I can’t push myself to the edge anymore. At least as much as it is possible–working in theater this over-activity business is kind of “how we do things ’round here.” This is difficult, because it means letting go of the “maybe that was the last flare up” mindset. This is a permanent condition. So easy to write, yet so very difficult to accept.

A result of examining both my people-pleasing at the expense of my own happiness and my tendency to over-activity–both of which are things that hurt rather than help–I did something really out of character. I had a thought, “It would be so cool if I could afford to have an assistant in my studio, even a few hours a week, to do some of the stuff I can’t do, but also stuff I don’t want to do because it takes away from the number of spoons I have to do the things only I can do.” This was followed by the realization that having done away with massage, I am saving nearly $400 a month. I CAN afford to hire an assistant, at $10 an hour, for four or five hours a week. So, I did.

I’m panicking a little now, because this is tremendously new territory for me. My assistant starts Friday, and my goal yesterday was to start a list of what she can do for me. I choked, man. I sat in my messy, chaotic studio and couldn’t figure out what to have her do–because, as I told her when I interviewed her, I am not entirely sure what this will look like. It’s hard to give up control of my creative space in any way, and hard to direct an able-bodied person to do things for me. She completely understood that, and now I am trying to fully understand that, and figure out a list of things for Friday. It’s much harder than it seems, because there’s a lot going on underneath the surface in terms of my own acceptance of my condition and limitations.

I am sure I will make it through, I am sure I am doing the right thing for myself and I know it’s okay to feel like I’m embarking on a trip with no itinerary. We’ll get to the destination we need to get to–we won’t be left floating about the ocean with no sail. Fingers crossed.

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Where Have I Been? Nowhere, Just Here.

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Broken Ankle Update:

No invasive surgery required. Instead, they did a “closed reduction,” meaning they knocked the child out with general and manipulated the bones into place (note: you must be very strong to be an orthopedic surgeon) and put him in a long cast. The “long cast” goes above the knee so that he can’t move the tibia at all. It sucks in terms of mobility since he can’t bend his knee. That cast stays on for three weeks, then a short cast for four weeks, then a boot, then physical therapy.

Vacation Update:

See above. No vacation.

Art Update:

I have decided to pitch an adult coloring book to a publisher, so I’m working like crazy on that and forcing out all insecure thoughts. If I can’t get published that way, I will self-publish. I think I am onto something here, and it’s an exciting prospect.

Sewing Update:

Still sewing, but nothing too interesting right now. I need a good camera so I can actually take professional looking photos of my work instead of crappy photos on my phone or iPad.

EDS Update:

Christ on a cracker, it sucks.

1. Massage has stopped helping. I’ve been trying to avoid voicing this reality, since it means I no longer have anything for managing pain. That’s a really unpleasant place to find oneself. But, for $95 a week I should be feeling relief for at least a few days afterward, and I’m not. Sometimes I feel worse. I have to figure out how to man up and tell my therapist this, since I like her a lot and it’s not her fault but I do have to stop throwing money away.

2. About two weeks ago my left thumb chose to lose about 30% of my pinch and grasp ability. I can’t lift anything of weight (like a plate of dinner) with either hand if the weight is mostly to go to my thumb. I feel like I have silly paddle hands as I try to work around this, and it’s painful. I can’t have my CMC joints fused unless I am ready to quit my job and possibly lose the dexterity I need to sew and draw. Which is sort of the same as saying I have to give up oxygen. So I’m stuck.

3. My shoulders are worse again, and I cannot under any circumstances sleep on my right side. I wake up around 2:00 am every morning because I am in pain, and it can take up to two hours to get back to sleep. Sometimes I can be sitting at the table talking to someone and a third of my brain is occupied with how much it hurts to just deal with the weight of my shoulders hanging off my neck.

4. My back is verily fucked up and hurts all the time. I have two degenerated discs in the lower back (L4 and L5) and what I probably really need is to get a chiropractic adjustment. But, that is problematic for EDS, and so I have mostly given up on it at this point. My last stab at that was my PCP putting my upper rib back in place and it popped right the hell back out within hours, so that was a wash.

5. 80% of the time, or more, I can deal with my level of daily pain. Sometimes, though, it just seems like it is far more than a person should be asked to deal with, and I have a day or days of feeling really angry and frustrated and sad about being in pain every single damn day. Which is why it’s hard to give up massage. This weekend is one of those points where I’ve had it with my body and my discomfort and there’s going to be a pity party. Which is not a party I can even enjoy.

Overall Update:

Ugh, except for art, which is good.

A Cloudy Morning

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One of my chief pleasures in the summer is listening to (and watching) the endless hummingbird war over the feeder. This morning it is cloudy and raining, so the windows are open and I can hear all the little Jetsons sounds they make as they chase each other away from a feeder that contains enough food to support the entire backyard colony. Yet, it’s not good if there’s enough—I guess hummingbirds are capitalists at heart.

Lately I get up and check my blood pressure, my husband brings me coffee (we have a running joke/dialogue around that:he says, “I brought you something” and I say “AND some coffee?” and he says “Careful, it’s hot.” and I say, “So’s the coffee.” this is the secret to marriage—regular, prescribed dialogue. Or someone to bring you coffee, idk which) and I start soaking two tablespoons of chia seeds in either water or, this week, dark chocolate cashew milk. I am struggling with the Propanolol; even though the dose is very low, I think it is causing some shortness of breath (it’s known to aggravate asthma) and, I suspect, greater heart irregularities. Also, they aren’t kidding about it making dreams weird. I’ve had nightmares and long, strange dreams that are very intense.

On the flip side, it seems to prime my sleep switch without making me drowsy; it’s like I just go to sleep like a normal person might. I faintly remember the days of simply lying down to go to sleep, and it’s like a fairy tale. More often than not, I wake in the morning to a still full glass of wine (which I then return through a funnel to the bottle, yes I am cheap), which is a congratulatory event instead of my usual initial thoughts of guilt and self-loathing. It’s different….

I’m trying to be good about taking vitamins, so once I eat the slightly jelly, faintly gritty chia seed/cashew milk potion, I take eye vitamins, vitamin D, two Glucosamin Chondrotin and a probiotic. This chia seed business has resulted in the closest thing to normal gut function I’ve had in, oh, years. Gritty or not, slimy or not, I’m committed. The cashew milk will not have a second shot at breakfast, though, because it’s fairly gross–when this carton is gone, we will say goodbye. Too thin to be milk, too thick to be juice….no me gusta.

Last 4th of July weekend I was crashing off of Xanax, plunging into serotonin syndrome with Cymbalta, and texting my PCP as I clenched my teeth, cried, and couldn’t sit still. This year I’m just a little short of breath and floaty feeling, along with odd heart rhythms. This, then, is an improvement. Clearly my orthostatic/autonomic disorders are affected by hot weather. Hence my happiness about the rain, even though it may kill the whole fireworks option. The red and white fireworks tent in the field behind our house charms me with its circus implications during the day and annoys us with its intrusive lighting at night.

Yesterday’s drawing:

07 02 2015

It’s whimsical. The child criticized it, “What’s with her feet? Is she an amputee? Wait, why are you mad?” I pointed out, testily, that the whole point of this daily drawing exercise is to suspend judgement–mine or other people’s. Or, maybe it’s about at least being tough enough to resist the needling of a 13 year old. There’s the challenge.

Skirting the Edge

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More drawings.

6 30 2015

Then:

07 01 2015

Then:

07 01 2015 a

Here’s where I went awry, because I started thinking about audience. I got a lot of positive feedback on the first one with these two women, so then they wanted to say more so I drew this one. But then I loved it even though it felt unfinished….so I colored it:

07 02 2015 color

Meh. It lost depth in photography/editing, which is always true. I also don’t like the tooth of the paper I am using–and it’s not what I normally use when I color and complete a drawing. This stuff is a cheap drawing paper, and most of my work is finished on a vellum-finish bristol board–so it’s a lot smoother. I wanted a sort of sensual, private moment versus the more public, circus/audience sense I get from the first drawing with the striped costumes. It’s not pleasing to me at the moment.

See? Too much thinking–that’s not the point of the exercise.

Onward.

Drawing Board

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I learned to sew as an adult and as a result I carry no hang-ups about it. I don’t worry that I’m not good enough or that I’m doing it “wrong” or wasting my time. My father started trying to teach me drawing when I was six. He started with vanishing point perspective.

It was all downhill from there.

I internalized all kinds of criticism and hang ups and insecurities about drawing. I’ve talked about a lot of that already here, so it’s not necessary to rehash it. As aware as I am, though, of how wrong most of those notions are, I am still constrained by it. So, this summer, in between major medical bullshit and the like, I’m doing some drawing. Just drawing, just whatever I want, no rules.

Here’s the first three:

6 22 2015 6 24 2015 6 25 2015

I like them–and that’s the only thing that matters.

What Time Off?

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I was asked to make a Day of the Dead-themed Victorian walking suit for a show that will spend two years traveling to various museums. For the first time in my artistic life, I have not only failed to submit my piece early, I have missed the initial deadlines. Inspiration showed up late in this case, but I think it was worth it. Initially I made a Victorian-esque skirt from some of my extensive collection of Our Lady of Guadalupe fabrics. Then it all ground to halt. Digging around in a cedar chest filled with -Ray’s things for a class I was teaching on the topic of DIY-clothing (upcycling, transforming, etc) I found a jacket that I had made for her from two vintage blouses that featured an appliqued skull on the back.

In looking at that, and some other things I had made for her, I realized I was ready to let these things out of the silent tomb of the cedar chest. I wanted to transform them, then release the back into the world. I took the tshirt she sent me with the logo of their band, which I designed, and cut the logo out, hand colored it, and hand appliqued it onto the skull jacket:

Victorian Altar Process 1Victorian Altar Process 2Victorian Altar Process 3

Then I appliqued elements from a gorgeous quilter cotton that was full of Mexican folk symbols (and some skull fabric leftover from my purse-making days) as well as drawing root elements by hand with alcohol-based markers and a Tee Juice marker.

Victorian Altar Process 5Victorian Altar Process 4

Next, I drew in a cat skull with bony wing elements and painted them gold.

Victorian Altar Process 7

Then I decided that everything needed embroidery. Everything.

Victorian Altar Process 8Victorian Altar Process 9Victorian Altar Process 10Victorian Altar Process 11

Next  came the bustle. I used as the bottom layer a capelet I had made for -Ray from a vintage apron, that included hand made flowers and a portrait I drew of her sewn into the pocket. Over that are layers of a vintage linen with crocheted corners, and the top layer is a rotten Victorian collar. For height I made two sort of bum rolls out of related fabrics. Then I drew, appliqued, embroidered and painted everything.

Victorian Altar Process 13Victorian Altar Process 14

I will save the rest of the photos for a second post.

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Since that’s not enough to do, I am also volunteering as the Costume Designer for a production of Chicago that a good friend and co-worker is co-directing. The concept is that the show is being put on by a group of convicts in a modern-day women’s prison (shades of OITNB). Thus, they are all dressed in gray prison clothing which the actors have to try to make look sexy without a lot of options to remake things. If you doubt this possibility, think back to being in high school and shortening your skirt by rolling the waistband after you went to school, or tying your shirt so that some midriff showed. It’s working quite well. Also, though, a lot of their costume elements need to look like they made them from a limited amount of available materials, so I have now gotten very good at making fedoras and boaters that look like they are made from food wrappers and boxes:

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There’s also a derby hat covered in Dum-Dum wrappers for Amos as well as a bow tie and lapel flower of the same. The third boater, not pictured, is a Cheese-Its theme.

We go into Tech this week, and then, possibly, I will reclaim my summer break and actually get to relax and enjoy some of it.

Famous last words, that.

I Would Like to Interrupt the Complaining

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Because I am artistically inspired. I’ve had a bunch of drawings sitting around since last year, and hadn’t decided what to do with them. Then, I realized I wanted to return to beading them, and then (if this first experiment goes well) sealing them with a thick layer of high gloss art resin epoxy. The beads will then be under that layer of resin and I’m really excited about how (I think) it will come out. So this is the progress from yesterday:

Beaded Experiment

Now, I’m off to glue more beads before I have to go into work.

Should vs. Is

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How something “should” be contrasts wildly with how it “is.”

This is a central struggle in terms of acceptance and also action. I have to accept how things are, which means I must let go of how I think they should be. Also, though–until I accept how things are, I can’t take action to potentially make things more the way I would like for them to be. My path right now is to seek the middle; the narrow tight rope where I can balance between the extremes; in this case, the extremes of Should and Is/Are.

The Should:

should be able to come home from work, change into comfortable clothes, and then work in my studio for a few hours. I should be able to make at least a little bit of progress on my own work each day, even if I went to my day job that day. The reality, the is/are is that I come home from work, sit exhausted at my computer for up to an hour, then make dinner, start drinking wine, and go to bed in pain and worn out.

I really want the Should. That is what I feel I deserve and what I feel I want and what I feel I must have. I. Must. Have. As long as I cling to that, as long as I draw a line in the sand and tearfully, furiously demand it, the current Is/Are is where I will remain trapped. As long as I am trapped in the Is/Are, the angrier I will be that I can’t have the Should. 

It seems so easy, right? Ease up on the Should. Don’t let it go and free fall into the current Is/Are, but stop being so rigid about it. Explore the myriad of (stupid, not what I want, irritating, lesser) options that exist given the facts.

Fact: I get home from work progressively more exhausted as the week wears on. So, if the rest of the weekdays were playing cards, I can turn the Thursday card face down right now–there is no way I will have the energy to work creatively on Thursday. Often, I don’t have the energy to so much as fix more of a dinner than something frozen I can put in the oven and collect when the timer instructs me to do so. Thursday’s child with EDS, then, is not going to sew or draw.

Looking at Monday, though, there is a chance that most or much or often I *will* have the energy to spend a little time on my own projects. Monday, then, needs to be protected. I don’t have to leave as early for work because I see the Shrink at 9:00 am, and my last class is done at 3:20. If there’s going to be a chance for me to have some creative me-time, then on Sunday I should be making a dinner (or prepping food for the crock pot, or enlisting another household member’s help to prep) that will become leftovers for Monday  so that my shot at that time isn’t eaten up by the task of meal preparation.

See? That edges me back onto the tightrope again, balancing a little less precariously.

There will be Mondays when I had to work late and I can’t come home to create. There will be Mondays when I don’t feel good even though I had a shorter day and fixed dinner ahead of time. But at least SOME Mondays will be days where I can find the time to take care of my creative needs.

Tuesday shows that potential by maybe 20% less than Monday–but there is still a sliver of hope. That means that instead of dinner Monday being leftovers from Sunday, it should be a crock pot recipe that also covers Tuesday. IF I get an hour of time in my studio on Monday, that means Tuesday may only find a half hour; but the possibility is still there.

Wednesday I teach until nearly 5:00. There definitely won’t be any leftovers. Ideally, then, I would fix a dinner on Wednesday that is both easy and plentiful, to last into Thursday when I am completely fried.

Things I will have to limit:

On Monday, no booze until bedtime. Limited computer

Tuesday, the same, but maybe a bit more computer.

Wednesday–some computer, hot bath, booze.

Thursday: Whatever it takes to get through. Bath, booze, early bedtime, minimal dinner.

Even knowing that accepting certain realities will allow me to get closer to including things I want in my life, I feel resistant, which is the pull of the Should. I resent having to plan my life like this, losing some spontaneity in terms of when I will choose to work creatively, having to plan around pain and exhaustion. Yet, I can resent, dislike, rail against, resist what Is/Are all I want and I will change nothing and lose precious energy doing so. In writing, it seems a very small step to do what I have listed above, but emotionally it feels more like leaping a canyon. Except, if I look hard enough, there is probably a bridge that will allow me to cross the canyon one step at a time. That’s going to be the only way to the other side.