WELP.  Time to go to work.

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A Long-Winded Exercise in Honesty and Exposure

Let’s just get it out there. It’s probably no secret I struggle with depression. Many people do and it’s not something to you, usually, easily see. Just add that to my list of “invisible illnesses”, because it’s that list that generally causes a bout of crushing sadness. That, the hormones from the birth control I have to take for endometriosis, and the fact that I often don’t get proper nutrition, my blood sugar is unstable, and vitamins and minerals are outta whack. Oh, and that whole eating thing.

I try not to talk about it here, have talked about it on Facebook, but why? Why haven’t I opened up about how fucking awful it is sometimes. Maybe if I did, I wouldn’t entertain thoughts of a quick exit. You see, I have idiopathic gastroparesis. It is generally associated with diabetes (caused by damage to the vagus nerve), but I am not diabetic. Frankly, I chalk it up to starving myself in high school, sadly, to please some asshole I was dating. I then gained quite a bit of weight when I moved to California. All the wear and tear on that nerve might have done it. I’ve been told it’s possible, but who knows. I don’t really care anymore how it happened. All I know is, symptoms started at least as far back as 2006. I was in college and at the time, it was just extreme bloating and discomfort, always at night. It, along with my “introverted artistic sensibilities”, made me a little anti-social. It wasn’t until 2010, when I finally had an adult job and health insurance, that I was diagnosed (gastric emptying study). In the interim, I thought I was allergic to something. I would try cutting out wheat, dairy, but never thinking that healthy things like raw foods and nuts were actually making it worse. By then, it had become painful and I began throwing up. I dropped quite a bit of weight, but actually felt better. I feel a lot better, physically, when I don’t eat, but a) I love food and b) it’s kind of essential (food and mood, baby. food and mood).  (I was also on a clinical trial drug that helped immensely.   It stopped working in early 2014.)

I post this picture with Facebook comments not to make ANYONE feel bad, but just to give some sort of perspective.  Sure, I look “good” and healthy even.  And I was feeling alright, because I wasn’t eating.  It’s taken me awhile to come to terms with it, since I gained some wonderful body image issues in my teen years, but my frame tends to rest well at about 130-135lbs.  For the record, I’m 5’3″.  Maybe that’s chunky to some, and to you I say, check your fucking head.  Maybe that’s too skinny for some, and I say….well, I guess, check with a doctor?  Because it’s not.  The point is, you never. fucking. know.  You never know what is going on with someone.  And while there was a part of me that relished in being skinnier and being complemented.  There is/was another part of me that wished I could come by it another way.

I bring this up now because it’s happening again, slower this time.  It’s not as noticeable, which, oddly enough, makes it worse.  I have a new job, a fairly physical, 40 hour a week job, with new co-workers that I have to slowly and carefully educate, always minding how I’m coming off so I seem “believable”.  I worry every time I eat anything at work that they won’t believe me.  I don’t even like to eat in front of anyone anymore, lest it misinform.  Just know that if you see me eating, I’ve made the gamble to deal with the aftermath.  The pain usually takes anywhere from an hour to three to set in, so you probably won’t even see it (unless it’s a bad flare (yes, it comes in flares) and it happens in minutes, that’s when I get skinny).  Everything is timed.  Everything is a judgement call.    But let me tell you this.  There is not a day that goes by where I don’t feel like crap.  If it’s not the nausea, it’s the pain.  If it’s not the hunger, it’s the pregnancy belly bloating.  If it’s not the blood sugar it’s the lack of _____ vitamin.  I work in food service, so luckily I have not thrown up at work.  Because I hate throwing up and will do everything I can to avoid it.  I also have to wear pants and pants hurt.  It’s why I built up a collection of dresses and skirts in my “business casual” former lives.  But now these fucking pants.  Yeah, I know there are a lot of people that don’t like wearing pants, but by the end of the night, it feels like that waistband is a rubber band full of tacks.  It’s why I have so many clothes.  I have to.  Because they have to range from a size 4 to 10.  It’s these little fucking things that you don’t think about until you have to deal with it.  But these little things, they add up.  Things like trying to avoid things that make you throw up, things like plain water, “too much” food, and crying.  Hooray!

And then you have to move home, leaving a place you loved dearly, because you feel like your body is failing you and you don’t know what to do.  Because you’ve always been an independent person and it scares the shit out of you to have to ask for help, to think about being taken care of by people that YOU should be taking care of.  Because you can’t keep taking two buses to get to doctor appointments that lead to no answers, and only leave you more frustrated and alone.  Essentially, for the last year, I have been having what feels like neurological issues.  My cisapride (clinical trial) drug that worked well for three years stopped working and I started getting twitching, itching, burning, numbness in my extremities.  I’ve seen two neurologists and two psychiatrists, because if there’s nothing wrong with the few tests they run, they insinuate it’s all in your head.  Don’t get me wrong.  I probably should be seeing someone, but for the depression and the frustration caused by chronic illnesses and the fact that I CANNOT GET ANY FUCKING ANSWERS.  No one wants to play Dr. House and I do not have the energy to do this on my own, to fight for myself on my days off when I only have the energy to sit quietly at home and read.  It’s very hard to be your own medical advocate.  It’s draining.  Godspeed to anyone who does it, for themselves or others.

So, here we are again, trapped in a, yes, I’ll say it, shitty job.  I came home, in debt because I wasn’t working enough, scared to apply for disability because I know GP, endo, depression is not enough.  Scared to apply because I don’t want to be a drain on anyone or anything.  I took a job I was worried I couldn’t handle, physically, but figured it was only 30-35 hours a week and maybe it would be good for me to move around rather than sit at a desk.  I took a job with a company that I foolishly thought was based on community, helping people lead better lives through natural foods, being understanding.  And it is, to a point.  Most there are, but humans are humans and when you see someone not smiling all the time, there aren’t a lot of people willing to dig deeper.  But in the end, it’s a company, nearly a corporation in the layers of management.  And I just got a “talkin’ to” by said management.  Let it be known, this is the only person I have encountered that has made me feel this way.  To dismiss my explanation of battling chronic illness, to ask me what the difference is between 35 and 40 hours a week, what those five hours are really, to ask what the difference is between closing at 8pm and 9pm.  These are the marks of an uncaring person.  To tell me that I seem unhappy (when I maybe see you twice a week for a few minutes) and, essentially, I need to get happier.  These are the marks of a complete asshole.  I really don’t care who sees this.  That is a shitty thing to say to someone you don’t know, whose battles you don’t know.  To sit there, making twice what I make to do half as much labor and tell me that I need to be happier about making $9.25 an hour to kill my body and my emotional well-being, makes. you. a. shitty. person.

So, yeah, things have not been good.  I feel trapped and no good can come from this girl feeling trapped.  My hands and feet have been going numb and cold and tingly again, this time lingering for hours on end rather than 20-30 mins.  My vision is blurry, usually in the morning, sometimes all day.  I’m out of birth control and need it to keep the endo and cysts away.  Certainly not for what it was intended for, THAT’S FOR SURE.  It doesn’t matter because I don’t bleed anymore.  Last time I went for nine months, this time it’s been four so far.  The last OBGYN didn’t seem too concerned, so I just gave up on that front.  I can only fight one fucking medical battle at a time and it’s the nerve issues are front and center because I just want to know why and not have it be another damned thing.  I’ve been at this job for only 2 1/2 months now.  I get health insurance at three months and now I have to wonder if I can even make it that long.  Now I have to “prove myself” to someone I have absolutely ZERO respect for, not only because they don’t seem to know what they’re doing, but they DO seem to know what they’re doing.  What a sweet gig.  $40K a year to show up for a few hours, sometimes “work from home”, nitpick on your underlings when you’re there, and the worst part, to not give two farts for your employee’s actual well-being.  ZERO respect.  You get what you give, brother.

NYC, from the High Line.

Diana, Color Negative.

My god, I love the bleed and the overlap between frames.

Flying over 1-10, New Orleans.

This gallery contains 10 photos.

35mm Kansas Mardi Gras 2015.  Hey, you take what you can get.  Ya herd.

Finally got a few rolls of film developed.  NYC Drag March 2014.

120 Color Negative, Diana.

Wan Shang Hao, Sweet Mao

This past Friday, I had to let my sweet boy go.  The past month and a half had been rough, and he’d deteriorated rather quickly.  After a litany of issues (stage 2 kidney disease, anemia, dehydration not remedied by fluids, IBD, a heart murmur, and possibly lymphoma and pancreatitis), on Friday morning he could not walk or use the restroom unassisted.  He didn’t want to eat, seemed the most forlorn I’ve seen him, and kept falling.  It was absolutely heartbreaking.

Of the long list of pets I have had in my life, I have never had to make that decision personally.  I’ve never had to be there when it happened, but I needed to be.  Logically, it was the “right thing to do”, but my heart was, is, broken and I miss my sweet boy.

My sweet boy that didn’t seem to care for anyone else (we’d gone through our share of cat-sitters).  My sweet boy that talked, cooed, grunted, yelled, cried, headbutted, loved to be carried everywhere and lay on my chest as I lay on the floor, in our moments of peace and reflection.  I’d never had a cat that was this dependent and vocal.  Quiet talkers, all.

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Mao came to me a stray 5 1/2 years ago.  He was an Uptown cat in New Orleans, an obvious former pet with de-clawed front paws and still keen on people (to a limit).  The girl who posted the Craigslist was letting him in her house and feeding him.  She was moving and afraid no one would care for him.  We did a visit.  I was accepted.  She had named him Jean Valjean.  There was no way I was going to be yelling out “Jean Valjean!”  (Sorry Les Miz fans.)  So, Mao he became (because I could call him The Chairman and if you say it in the third tone in Mandarin, it means “cat”.  Double duty.)

The vet had told her that he was five, so I figured I’d peg his age at 10, maybe 11 this year.  Turns out, he was at least 12, probably more.  He’d never tell me.  Sensitive about his age it seems.

Before we left New Orleans in November of last year, he had lost a little bit of weight, nothing terribly alarming, but I could tell he was getting older.  More grey on top of grey.  It was a stressful trip in the beginning for him, but he seemed to calm down.  Laid in my lap nearly the whole way.  Logically, I know his downgrade had started before we left, that if we’d stayed, he still would have gotten sick and I wouldn’t have had the help of my family to take care of it.  But I still felt/feel guilty, like I never should have taken him from New Orleans.  That we shouldn’t have left.  Guilty that I couldn’t fix him, that I was/am so broke that treatment had to be debated and spread out a little.  With his laundry list of problems, truth be told, all the money in the world could have probably only given him, me, a few more months, but I still feel guilty.  It’s terrible watching someone you love deteriorate, human or animal.  Helplessness reigns.  I would hold him, try and absorb some of the sickness, but it didn’t work.

And then there was the anger.  I still had to work.  There was no one there to watch him, comfort him.  Be there so he could have his space heater on.  I got so angry that I had to serve people their stupid fucking kale salad while my sweet boy might be dying.  None of it mattered.

By the last week, the steroids, the b-12, the nausea meds, weren’t helping.  We went to another vet, a 2nd opinion that turned out much the same.  Confirmed the decision I was facing.  Weeks of sleeping on the couch so I could hear him if he needed something meant I was there when he fell, stumbled and fell behind the couch at 4:30am.  He couldn’t help himself so I had to pull his skinny body out and hold him until whatever was happening passed.  The episodes coming closer together.  I’d leave for work, the house covered in towels and all cracks and crevices sealed with pillows in case he fell again.  He didn’t, there wasn’t time.

So now he’s gone.  It was as good as a death at this stage can be.  I was there when he went to sleep, holding his head, crying uncontrollably as I am now.  I wish I could have told him more, held him more, hoped he would understand.  I took him to our family vet, the one where my dear friend(s) work (thank you again, Dana and Talon.  thank you).  Oddly enough, my poor Mom and Dad had dropped off another cat that had to be put down earlier that day.  She’d had AIDS and was pregnant.  So we took them both home and my Dad and I dug a double grave in the snow.  It was a goddamned terrible and sad day.  BUT, it helped to do that.  To be together, to do the things you’re supposed to do.  To bear the body home, even if it’s covered in fur, tiny and broken.

So my sweet boy is gone.  I miss him terribly and keep finding his things and breaking down.  I see him sitting in the window, or where his food bowl used to be, or hear a noise and wait for him to come around the corner.  But he’s not coming and every day will get a little easier, I hope.

We still have our mornings, our open window or porch sitting mornings, our nights at the computer, our reading sessions on the couch, the favorite chair.  Wherever he is, lying in the sun, sniffing the New Orleans breeze, I hope he’s at peace, knows I love him dearly.

We are the Place-Makers, We are the Schemers of Schemes

For the complete backstory on the following, please consult this extremely well-written piece by Dave Loewenstein.  However, in broad terms, this issue is not inherently place-based, not special to Lawrence, KS.  It happens in cities big and small, nationwide.  It might be happening in your town, cached under the banner of those beautiful words, Progress, Revitalization, Economic Development.  The battle of hearts and minds is easier to win when you color the opposition as impediments to a Better Life and More Money, for everyone, surely.  In New Orleans, it’s cached under the outright lie of “no one was using it anyway”, probably because the big government No One didn’t care to revitalize it until big development money was on the table.  Rich people need grocery stores, poor people do not.  Rich people need to have a beautiful view of the river, poor people do not.  So, I found it disheartening, if not surprising, to see this, on a somewhat smaller scale, happening in a city I consider my hometown as much as my actual hometown.  My timing could have been better, should have been there for the actual vote to proceed, but after a three hour meeting, in a shaky, nervous voice and broken gut, I read something I personally felt needed to be said.

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From my public comment at the end of the City Commission meeting in Lawrence, KS on the evening of January 27th, 2015:

“We live in an age where authenticity is becoming commodified and privatized like oil, like gas, like water, like any other money-maker.  The problem is, you can’t hold the authentic, see it, touch it.  You only feel it, know it to be true.  Some are better judges than others, and unfortunately, to the money-makers, the truth of the thing doesn’t matter.  To the consumer, if it isn’t real and lasting, and when the shine has worn off, they will eventually move on.

I have just moved home after six and a half years in New Orleans, a city bursting at its sandy seams with absolute culture and authenticity, and even there, maybe especially there, the culture vultures have descended.  It seems to be the thing to do these days, to look to the music makers, the dreamers of dreams, to lift us up not just song and beauty, but with economic development and high-priced lofts.  It’s the same in nearly every town and it breaks my heart in Lawrence as much as it does in New Orleans.  To see dollar signs in the eyes of a few, stars in the eyes of those sold on these ideas, and deaf ears turned to those who sound a warning, a call to caution.  I’ve seen entire swaths of cities I love turned into meccas for “culture” and the upper-crust creative class, while the people who made that area so enticing, the people who were previously ignored and denied basic services, are priced out and sent to the outskirts, scattered and struggling to pay bills and build community once again.  The “district” is then used up, turned like an overripe peach, loses its flavor, its authenticity, and the consumers and developers move on.

I’m here today as one of those artists, those dreamers of dreams, to urge consideration in your E. 9th Street dealings, and any future projects.  You cannot force culture.  You cannot manufacture authenticity.  And you cannot exploit the very people who have made this town what it is.  We are not to be written off as naysayers.  We are not over-reacting or getting in the way of progress.  We are voting, tax-paying citizens who urge consideration of ALL citizens, inclusiveness, and long-range thinking.  If you want your so-called arts district to sincerely thrive and live on, consider the people, consider the future, consider what it takes to be a working artist, a low-income family, a student, a single mother, a middle-income couple, all of us.  We are what make up this specific place at this specific time and our cries for silly things like grocery stores, laundromats, health care, and well-paying day jobs fell on deaf ears before, but  consider these things before you drive throngs of culture-seekers through our streets.  Consider how day-to-day living happens just outside this proposed corridor before you try and sell us on the benefits.  But, if this is just about money, by all means, ignore the very people you’re relying on to cash in on culture.

Thank you.”

My photo, “aero”, has been selected for Rayko Photo Center’s 8th Annual International Juried Plastic Camera Show! 

Exit Interview

By the time you read this, I’ll be gone.

You’ll have to pardon me, but I’ve always wanted to write that.  And in a small, but possibly over-dramatic gesture, this was supposed to be posted as I drove away.  But, you know, things happen, moving takes up more time and energy than you anticipate, and suddenly it’s almost two weeks later.  You’re in a different city, what is supposed to be your home, you can’t get the zip code or city name right on job applications, keep making weird disgusted faces at the local news (it’s gonna stay like that someday), and you don’t tell anyone because you’re hiding until you’re ready.  And then you just keep hiding because then you get depressed.

But what follows, seems to be the thing to do these days, write her a letter when you leave, a long, prosey, sad goodbye.  It’s because she’s special and deep down, not one of us is 100% positive we’re doing the right thing when, if, we leave.  It’s a little like leaving home (home-home, not adopted home) for the first time.  You know it needs to be done, but there’s still that breaking, no, with her it’s that stretching of the cord that binds you, testing its limits.  New Orleans will always feel like absolute home to me, but it’s time to face the truth.  It’s not mud and swamp water that courses through my veins, but sod and gently rolling hills (at least the politics haven’t changed, guffaw).  I’m a girl of the plains, not born of bayou pirogues but casting off in land-locked lakes.  True, my homeland doesn’t hold as much magic as South Louisiana does (for me), but maybe it’s time I make my own, as soon as this Black Cloud of Leaving passes.  Time to (eventually) find out if living off the land, the land of my birth, is hereditary.  Time to admit I need help, as hard as that might be.  I have a plan, a ten year plan, if I don’t get distracted and my body allows it.  (This morning, it’s running some plays I can’t quite defeat. And thanks for the football love, New Orleans.  I’mma Who Dat ’til I die.)

I will miss her.  God I will miss her.  Eight months before departing and I felt like crying when I thought of leaving, a few days before and it was unreal.  It didn’t hit me until I stood in an empty apartment, about to leave.  Broke down, had to sit in the moving truck until I was sure I wouldn’t run us off the road.  Driving away, a clear image of my soul, my spirit, my whateveryouwannacallit, clawing at 1-10 West, at 1-55 North, trying to get back.  Past the lake, resigned.  (Whatta you gonna do, spirit, swim back?)

So, I will miss her broken streets, her moss-laden oaks, her young earth coating of seashells and river silt, her egrets and pelicans, and wish I could wrap up City Park and take it with me.

I will miss her High Cloud Season, Low Cloud Season.  Every Cloud Season.  Kansas may have big skies, but nowhere I have ever been can hold a candle to Gulf Coast clouds.  Nowhere.  Shut your damn fool mouth.

Fluffy towers that dwarf the sky itself.  If you’re not a member of the Cloud Appreciation Society of NOLA, I highly recommend it.

I will miss Swan River.  There is no other space like it.  Yoga (and so much more) in an old library, with the beautiful mural proudly displayed, and amazing, welcoming people all around.  How perfect is that space.

I will miss these girls.  So much.  I can’t even say anymore because I will start crying on this keyboard.  And anyway, ladies, it’s not goodbye, just see ya later.  There will be others I will miss, and I hope you know that, and I’m sorry I didn’t get to say a proper goodbye. Know that I was, and will be thinking of you, but these two ladies, these are mah girls.

So, goodbye Nigerian cab corner (Bienville & Royal).  Goodbye Poo(h) Corner (Carrollton & Iberville).  Goodbye Flagstaff Walk (Jeff Davis walkway between Toulouse & Bienville).  Goodbye to nearly constant music in the streets, any street.  A lone trumpet, from somewhere nearby, a lone sousaphone player, marching up down broken sunset seashell & silted concrete.  Goodbye N. Pierce, where I began my tenure, met lifelong friends, and then came back full circle to depart, but never really leave.

and p.s. thanks for bestowing me this weird cat.  maybe I’ll see ya for Carnival next year.

—————————— Which brings us to today….

My brain can’t wrap my heart around it.

Suddenly, gone.  Suddenly, quiet (my god it’s quiet). No neighbors on their porches, no streetcars, no brass bands practicing in the street.  It does hurt.  I’ve never missed a city like you miss a person.  The first full day in my new apartment, listening to ‘OZ and I couldn’t stop crying, and laughing.  I haven’t been able to listen to it since.  What have I done?  What I needed to do, but painful all the same.  Like I told the good, good friend (thank you, Kim!!!) that came down to help me leave, “it’s like ripping a Band-Aid off, OF YOUR HEART”.  Always one for the false joke, the hysterical histrionics.  It’s going to take some time, happened so fast.  And there’s a large chunk of my heart that will forever and ever be covered in Spanish moss and iron lace. There’s so much more I wanted to say, but it’s so much that I can’t quite wrap my arms around it. Maybe it will come in time, maybe this is fine the way it is.

(Two pairs of socks, three blankets, and I cannot get warm.  The cat is none too pleased.)

So, if you’ve made it this far, and you’re in the NE Kansas neck of the woods, come to our small pop-up-ish holiday art sale this Saturday and Sunday (Nov 13 and 14) at 1146 Connecticut (in the renovated church) in Lawrence, KS.  There will be hot cider and pumpkin bread and awt.

 [all images copyright Jill Ensley, thank you very much. and if you want to see the photographic progression, check here. I’m hoping to update it soon.]