Tag Archives: grace

i am either a storm or a drought

i am either
a storm
or
a drought.

in-betweens
have never
been my thing.
~ Sanober Khan

The Judgment of Paris; Paris seated on a rock choosing between the goddesses Venus, Juno, and Minerva, the god Mercury with a caduceus in between them by Giorgio Ghisi

Men choosing women, that be some crazy shit there.  Paris, the god credited with starting the Trojan war because he was a wimp and choose the one that offered him the most beautiful woman instead of those who offered dominion over Europe and Asia OR battle skills and wisdom – even those male gods often thought with their dicks. I mean he had to pick between (per the picture):

  1. the Roman goddess of wisdom and strategic warfare, and the sponsor of arts, trade, and strategy.
  2. the Roman goddess who was the protector and special counselor of the state.
  3. the Roman goddess whose functions encompassed love, beauty, desire, sex, fertility, prosperity and victory.

Which is pretty much what every woman is capable of doing individually in a mythological triumvirate.

But me… I am here, at the grand milestone of being half way through chemotherapy.  In this special place of being half way done, I am fully done with the first medicinal cocktail known among us cancer hipsters as AC. AC is a shitstorm, one of those  (the A) has the nickname of the red devil or the red death and yes, that medication is fucking super strength Kool-aid red. It gets hand injected into you, and is the reason why I succumbed to the port being placed since its superpowers include being able to completely destroy any muscle it comes into contact with, so one little leak and plastic surgery would have been required. It causes all sorts of problems in spite of that.

I stand with that behind me, and the last single spirit, known as T, ahead. T being something that most tolerate a bit better, and I pray, wish , hope, make offerings that I am one of those.

I have lost most of my hair, but not all – and alopecia is a nasty thing but having some hair and some baldness is quite another.  I do, with some degree of pride, have an excellently shaped head. For the record, all ones hairy areas tend to lose hair, which is rather interesting to witness.

My superficial body fluids have turned into wax. My eyes water thick goo, my saliva is like syrup, and my sweat is like a coating of candlewax.

I have developed mouth sores, but was able to contain those nasty fuckers whose inauspicious start is as blisters around my mouth which turn into miniature wounds, sensitive to everything.

My nails, fingers and toes, are in a state – they feel as if they are slowly dying and agonizing death.

Cancer is a financial blow, so much so that my family started a gofundme for me. This is something my husband and I are trying to manage, it is so humbling in ways that I am not fully prepared to manage, and most especially not when they decided to start it (which was in the worst days of a chemo cycle), trying to manage handing them the information they needed as I as navigating the dreadful way one feelings as the poison that is chemotherapy starts taking its hold on your whole fucking body; inside, outside, and soulside…. and my immediate family were out camping. I still struggle with this, they love me, they mean to help and so, I have decided to find the grace in this experience.  Grace is something that has long eluded me. And if the lesson I am supposed to learn from this stupid fucking cancer is to find grace, then I ….

I can’t finish that sentence, it falls in the depths of despair that chronic illness can put one into if not careful to manage the  attitude.

I will leave it to, finding grace.

In other news of this cancerous nature, I am compiling a list (and I hate lists) of:

Bucket list for when my cancer shit storm is over

it includes turning my scars into tattoos, going dancing, going camping, going to Chimayo, returning to Hopi… I am totally taking suggestions!

 (and now some music to accompany my state of mind):

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the soft song of the white beauty

Searching for the sacred in the midst of my second cancer diagnosis

“The sound we hear when it snows is the soft song of the white beauty!”
~ Mehmet Murat ildan

My mother, I think, realized that I was falling into a kind of despair. I professed that I had lost my faith, though I had not become someone who hates faith – it was just gone.  She had noticed my flailing to make sense of my world, again and suggested a trip up north. A trip that included good food at The Turquoise Room at La Posada in Winslow and drives up to Hopi.

I pondered her offer, and thoughts of how I always loved going up to Hopi as a child were recalled.

I grew up in a magical place, there is a reason it is the birthplace of magic realism. My move to the USA (because I refuse to call it America, because frankly there is North America and South America and the USA being called America has never sat well with me) was not an easy transition, the USA doesn’t understand that kind of magic. There are exceptions to that. One such place was on my regular visits to Hopi as a newly transplanted child. There were two Hopi women who brought me back that magic. One was Helen Sekaquaptewa and the other was Elsie James and interestingly enough I just learned that they were related.

Elsie was local, and I got to see her more often. knew my great-great grandfather from when they both were at the Indian School in Phoenix, as a matter of fact he apparently introduced her to her husband. Whenever I would see Elsie, she would smile and tell me how much she loved my grandfather. She taught me how to make fry bread, often sitting with me at festivals at the heard Museum – teaching me the right consistency of the dough and the best way to pat the balls into a good piece of fry-bread, poking your fingers just so in the middle to prevent it from getting too puffed up when put in the oil. I cried deeply when I went to her funeral, she was extremely special to me.

Helen was the person that showed me that the special kind of magic from my youth in the Andes was present in the USA. I was relatively new to the USA, when my family went up to Hopi for a snake dance (probably back before non-Hopi were banned from freely joining them). I remember sitting on the roof, watching the most amazing ceremony – if you ever get a chance to see a snake dance, you should – they are memorable. I remember being in her kitchen, helping her fix food, and then I remember her taking me outside with her great-grandchildren to forage for wild spinach. Pointing out things that she thought I would find interesting as we walked to the edges of the village on the mesa.

So it was with these two influential Hopi women in my life that gave me a tie to my ancestors and the ability to see the magic in the land that I said yes to my mother, regarding a trip to what I could call my most local sacred space. It was a pilgrimage.

The drive up to Winslow was nice, we took the route through Heber-Overgaard and Holbrook. The Hotel La Posada is a fabulous space, designed by Mary Colter. I have a friend who claims, and rightly so, that it is a space full of feminine power that one can draw upon. We dined at The Turquoise Room.

I struggle as I write the next parts, as I want to honor Hopi guidelines on etiquette and yet share my experience as it relates to coming to greater peace with my own mortality and my hopes that I am of a Pahana clan. I met a Hopi prophet once.

We drove up from Winslow through to Second Mesa and the Hopi Cultural Center (HCC), stopping at the Little Painted Desert (in Navajo) on the way.  One of the things I like about visiting the Hopi Cultural Center is that there are carvers at the edge of the park next door.  There is something special about meeting the person or their family when purchasing something from them. You can find baskets, teas, rattles, bows and arrows, sculptures and Kachinas. I was able to bring to my life, five Kachinas; Crow Mother, Grandmother & Long-Haired. and Snow Maiden & Warrior Maiden.

I didn’t bring Snow Maiden to me at first. We decided to drive to K-town and see what was going on. The story is that a bunch of MIT student drove through once and fixed up a bunch of their computers, promising to return only to not be seen again.  One of the people with me has a son that teaches there and so we went to take pictures to share with them and see if we could get some MIT students to return. The whole ride, the image of her was in my mind, she was beautiful. We drove back to the HCC and held in my heart that she was still there. She was. I talked to the artist and his friend (who made my Warrior Maiden). They shared that the dances were happening this week and that I might see the Snow Maiden if I visit the ones at Shungopovi.

Front and back of my Snow Maiden

There was some discussion about going, but I was given the ability to decide and I did, I chose to go. If you are unfamiliar with attending ceremonies, revisit my link  above for etiquette. We drove to Shungopovi and looked for people standing on a roof, and headed that direction. We found a place to park and walked toward the sound, following people who were headed toward it. W walked through half-finished houses, through water puddles and made our way to the ceremonies.    There were not many white people there, maybe four aside from the three of us.  We sat on a door step and watched the ceremony.  It was special, oh so very special. And it was more exciting that I actually did see the Snow Maiden.

One of the things I learned from my friends on Hopi is that in a ceremony, the Kachinas are the gods… so, being able to see the ceremonial Kachina of the one that called to me was extremely special.

I ended my trip with four female Kachinas and one male.

Another goal of the trip was to find my tumor rock. This is something that my boss entrusted upon me.  When she got cancer she was in Sedona and saw a colorful iguana-esque lizard on a rock.  This was a message to her and she kept that rock, it was a representative of the cancer experience she was going through.  She came back and told me about the experience. I was in a shop a few days later when I found a lizard that could be put on the rock, as a representative of the experience.  When I was diagnosed with my second cancer, many years after hers, she brought me the lizard and said it was time to entrust it to me, that I had to find my rock.  So, I looked for my rock. I actually found two, one just outside Winslow and the other near  Heber.

My tumor rock while Warrior Maiden and Crow Mother watch.

I feel more optimistic about everything now. Instead of saying, for example, “my appointment tomorrow will tell me if I have metastasis” I am thinking in terms of “tomorrow I will learn if we can rule out metastasis”.   A simple exchange of words, but they have so much power.

 

 

Making me mad 6/365

Today I am supposed to write about what is making me mad.

I used to love this magazine, the back page folding exercise was a favorite right next to Spy Vs Spy. 

Aside from nostalgia about the magazine, nothing much comes to mind. I am sure i get mad, but it is those fleeting surges that are really rather insignificant; like yesterday when I was standing at the top step of my porch when my mini great dane decides to jump on me and I almost fell back – but that isn’t anger it is really fear.

I drove to work this morning thinking about this… “what do I get mad about”.

  • One that has been pointed out to me is that I do not like being teased, especially if there can be any inference about my being stupid.
  • I hate people who make fun of others. I try really hard not to do this myself, not always successfully.

Other things upset me, but they do not quite make me mad.

 

 

(from here)

Is there such a thing as an art based EULA?

“A good book deserves an active reading. The activity of reading does not stop with the work of understanding what a book says. It must be completed by the work of criticism, the work of judging. The undemanding reader fails to satisfy this requirement, probably even more than he fails to analyze and interpret. He not only makes no effort to understand; he also dismisses a book simply by putting it aside and forgetting it. Worse than faintly praising it, he damns it by giving it no critical consideration whatever.”
~ Mortimer J. Adler, How to Read a Book: The Classic Guide to Intelligent Reading

One of the biggest arguments I ever got into when I was in college was about artist (and specifically to the discussion then, authors) responsibility.  It was one of those life changing conversations and it has played out in my mins for the last 25 years in varying forms and with multiple applications.

One of the concepts that was brought up minimally then, but seems much more relevant now is that of the artists spectator. The actors viewer, the artists watcher, the authors reader.  I would argue that art is a social process, there is an end-user and a silently understood agreement (a EULA, if you will) between the artist and the one who “experiences” the art. I am not saying that a painter paints for a specific audience, I am saying the artist paints for an audience. This plays out in many ways.  I am not speaking to message of the art form, nor am I speaking to interpretation of the art form. I am speaking about the end-user. The watcher, reader, listener, or viewer.

I think we readers, watchers, viewers have gotten piss spoor about this part of the social contact. I know of only a very few people who consistently do these things actively, and even they slip up. We have gotten lazy, we react before fully reading, watching, listening or viewing. It may be that artists have stopped giving a shit about that their audience thinks or responds to their work, but on some level they have to want the people who experience their works to not pass by it in ignorance? I don’t know.

I, personally, write in the hope that the person reading my works thinks about something.  While I may be working through something deeply personal, having a reader respond often offers me greater insight. If they misunderstand, it helps me learn how to be clearer.

 

 

I have a friend that writes. They have an incredible vocabulary, though it is sometimes a bit archaic. They are pretty good at giving the reader what they want them to react to. I would say it is a mark of a good writer.  The interesting thing with my friend though, is that there is a general laziness with interpersonal conversation. That is frustrating. I imagine that the marvels and instant gratification of social media play out in these things.  Based on how I see communication working out now a-days, people seem to like to get their panties in bunch. They read a post, or see a picture and form these hard-line reactions.

I am no saint in this regard. I caught myself doing it all the time. it was to the point where it became personally embarrassing. Thankfully I have some friends who loved me enough to tell me to go back, read it again.  So, I would pull my panties out and go back. And 99% of the time, I had reacted rather than read.

So, what are some things that I do that help me know I am doing this?

If something pisses me off, I go back and read or look at it again. Occasionally I will read it out loud, or view it in a different place.  I pinpoint the words/images that I am reacting to. I ask myself what are they trying to communicate? If I am still unclear, I ask questions.  Am I reacting very strongly, then take a break and go back to it later (in instant gratification land, this can feel tough). In the case of written work, write it out. Look up words that you may not be sure about how they are being used (this one has been fun, for my friend with the archaic vocabulary, I sent them a list of all the words I had looked up when I had read their work… I thought it a fun conversation).

In the world where texting, email, posts, and comments have become a regular form of communication, it might behoove us all to become better at what I might call active appreciation.  Actually, you do whatever you want… but as for me, I am going to try to listen, watch, read, and view  with more attention.

whose boat is on the running stream…

“What should I possibly have to tell you, oh venerable one? Perhaps that you’re searching far too much? That in all that searching, you don’t find the time for finding?”
~ Hermann Hesse, Siddhartha

ecbracletred22-020

We are cleaning house to host Christmas. And as is often the case on such endeavors (at least in my life) things have been found that elicit powerful and profound reactions.

I was tidying up our mantle and found a stone jar with a fossil lid. Curious, and willing to delay the tidying up to explore, I opened it up only to discover something I probably needed to find.

It was a 5 foot long string of red beads.

as i pulled the strand out, I thought back on when I must have bought it. 17 years ago, when I was in Quito and roaming one of the many folks selling things in the parks.  I remember picking this one out because it had two “gold” beads in it.  I twisted the string of beads onto my wrist, feeling a simple pleasure as I felt them wrap around.

It is a simple standard of beauty that has carried with me. Many of the indigenous women, of varying tribes, in Ecuador wear them. It is said to ward of evil and to protect the wearer. One will see these wrapped in various widths and on various ages of the women in Ecuador. Red bracelets are actually something pretty widespread and come in a variety of materials.  It is a familiar one to me, and I have worn it on my wrists for these past few days, a certain level of comfort in seeing its length wrapped around my wrist. I touch them, roll them against my skin, admiring the variety of sizes the beads come in.

Last night, I was in the bath tub and wondered if the string would suffer from getting wet. I rolled and untangled my bracelet and gently laid it out to dry.  This morning I picked it up and twisted it back on my wrist.  There was such a comfort in that ritual. I wondered how many other women had gone about starting their day by twisting these beads around their wrist, in a mix of superstition, habit, and because of the gentleness of it.

 

red beads
This is my red bead bracelet.

“For such is the way of it: to find and lose, as it seems to those whose boat is on the running stream.”
~ J.R.R. Tolkien, The Fellowship of the Ring

a moment, but not the dream… a reflection of a gentle experience

“some moments are nice, some are nicer, some are even worth writing about.”
~ Charles Bukowski

I am reflecting on the gentlenesses that life has a tendency to bring.  Those moments that are often soft, quiet… almost imperceptible.  Moments, though, that are imbued with something that makes them stand out from other moments… not because they are nice, nor because they are even nicer, but because they somehow separate themselves from the other memories and cast a soft glow where they stand.  They don’t have to be personally significant, often one is a mere observer or pulled in by the experience.

I love those moments. I should write about them more.

This past March, sufficiently recovered (physically) to travel, my son (Squink) and I set off to Mexico to meet his student exchange family. A formal program through my son’s school that introduced kids to foreign travel and boosted their language skills. It was a delight. I got to know some parents much better and was reminded why there are parents that I would do best to avoid!

So, Squink and I hopped on a luxury bus with a ton of other parents and their children and made our way south to Old Mexico!

I had a glorious time, met some wonderful parents. Our Mexican counterpart (the parents) hosted us at a wonderful beach party. There was loads of laughter and fun. There was a lot of food, and chasing, and merriment.

A mother, one that had been Squinks soccer coach in first grade,  on the trip with us revealed that this was her first beach experience. She had never seen one before and how delighted she was to have the experience. She was a little timid about getting in the water though. She and another mom and I had all laid our towels on the sand together (me for protection from a mother in our group that I find to be insanely manipulative) . We shared our snacks and laughed… this was in and of itself, a great moment… but it was destined to be greater. We walked along the water line with the mother and managed to get her to put her feet in the water and seemed happy to stay there… but the other mother and I insisted it was not the full experience.  She was nervous, did not want to do it alone.. so the other mother and I looked at each other and declared that we would go in with her… and nervous exchange and we were tossing off our t-shirts and getting down to our suits, and we all ran towards the water and jumped in, all the way in.

We all raised our head from the water at about the same time, laughing and smiling. checking into how the others felt. Our kids had seen our mad dash into the water and we had them swimming around us.  In terms of being a mom, it was a rare experience, especially with  women who are not close confidantes. There was a purity in that moment that made that simple act of jumping in the water together something magnificent, something to be treasured. I equate that experience for the mom who had just had her first ocean experience with the first time I saw snow.  It had a magical mystery to it, and that first time I saw snow was magical.

While there are many wonderful memories from that trip, the one I describe here was magic.  On the long bus ride back home, I told the mother (with previous ocean experience) that was with us when we jumped in the water that it was my favorite part of the trip, she looked at me across the aisle and said to me “mine too”.

I know not to question it too much, to just accept that it happened and treasure it like I do.

This is of Squink and me just after the event, in Mexico
This is of Squink and me just after the event, in Mexico

“I like the posture, but not the yoga. I like the inebriated morning, but not the opium. I like the flower but not the garden, the moment but not the dream. Quiet, my love. Be still. I am sleeping.”
~ Roman Payne

If it quacks like a duck… it must be stunned

Today, during what was originally supposed to be a quick glance through my Facebook feed I read the words “IN WOMEN WITH PERSISTENT CERVICAL CANCER”.

It was in all caps too. PERSISTENT CERVICAL CANCER.

fuck

the urge to cry from worry

fuck

I stared at my screen thinking; Is this a thing? Can women get cervical cancer… on repeat…

My joints started to ache, my skin flushed with needle pricks, my face got hot, I held my breath.

Is this really a thing?

How did I miss this… I mean, I am a medical school dropout for chrissake… one who has worked or volunteered in breast and cervical cancer issues for most of her adult life…

In my head, in that stunned moment after reading that, I had the idea that some women just kept getting cervical cancer… like one gets a cold… they are both viruses, after all.

So, I (somewhat reluctantly, yet with incredible haste) went to my very trusted medical internet sites to see if there was such a thing (complete with a search for an applicable ICD9 code) as Persistent Cervical Cancer.

OK.

deep breath

the urge to cry from relief

Turns out, it is another way of saying metastatic cervical cancer, and just as I had thought before I had read that post cervical cancer recurrence rates (really, it is 5 year survivor rates) are linked to stage of initial diagnosis.

fuck

I wonder if my conversation with a person (a woman who had also had a cancer diagnosis, though of a different variety) just minutes before seeing this, where we talked about how certain things just tend to have an initial thought that you have a recurrence, played into how I reacted (what a sentence this is?!).

Your tooth hurts  – it has spread.

You get a bruise – it has spread.

You have an ache – it is a tumor.

but… maybe not.

The brutal art of being… is shockingly gentle

​Word of advice; do not, for the love of well made chicken soup and all other things holy, ever ever ever  Google the words and look at the images for “The brutal art of being”.

“There is brutality and there is honesty. There is no such thing as brutal honesty.”
~ Robert Anthony.

That said, living is brutal. It is hard on our bodies, what with that getting old crap… then there are certain aspects of how we treat one another. Why the fuck are we so stupidly cruel to each other?

 

There is another part of me that kind of finds this sentiment above a bit ridiculous. I mean, we are animals after all, it’s not like opposable thumbs and the ability to breast feed instantly granted us some sort of “nice card”.  As a matter of fuck   fact, I learned at an early age that life had this brutal part to it. Between friends with bodyguards, sleeping in the same room as my brother so one of us would have the chance to scream for help in case we were kidnapped, watching my dad routinely killing bulls through his grand love-affair with bullfighting… this were in my face demonstrations that life could have a nasty bitter after-taste. It is super interesting to note that the same place that gave me all this… hmmm….. brutality, if you will…. also gave me magic.  Beautiful, glorious magic.

 

I, at this very moment, am wondering if I lost the ability to see this magic? A temporary (I would hope) blindness? Or maybe I am seeing another side to the magic, and I need to learn to recognize it. Perhaps it left when my faith in the divine disappeared in a puff of smoke? When I used to feel this kind of angst (for the lack of a better work and to a much lesser degree) I used to think it was a part of my search for grace.  Maybe it is an extension of searching for grace? A more fevered search.

When I left my life behind and moved to Ecuador to attend medical school, one of the more incredible things that happened was that a boy followed me there. I had no idea that he loved me, but he did. My Ecua-mami (my mother figure in Ecuador) and I talked about how this made me feel… I was nervous and apprehensive, I had never even considered even an attraction to him, yet here I was planning a vacation with him. We talked about assumptions and implications. She told me that I would make my own decisions, but that life would, in a way, make them for me.  That is exactly what happened.

I never was able to love him the way I think he wanted me to. I learned recently, that he just earned a significant year chip in the Bill and Bob club.  This dramatically coincides with when he realized I was not going to spend the rest of my life with him. While I can’t confirm that his experience with me served as some catalyst, my gut tells me it plays into that. Life is brutal. I took so much for granted with him, though not in a shameful way. I still think about that experience traveling around Ecuador with him with a certain fondness. It was, however, rather brutal… thankfully it was imbued with a certain magic that the landscape provided and in some ways became one of those significant romantic moment of ones in my life.

So, fondness… there is a gentle art to fondness. I used to be a master of it… it being genuine fondness. Maybe this is where I should explore next. That area is a place in my experience, my life, where some hard truths about self are to be acknowledged (like the story of the boy above, for example). The nice thing is that fondness is gentle, and even the hardest of these truths are tempered with a certain gentleness.

Volunteering at the gala… (day 6)

I have been serving as logistics co-chair for the grand unveiling of a historic home in Tempe, AZ.  Doing so has been a labor of love for me for several different reasons. It was a historic home, and since my family has ties to Arizona back into its territorial days, keep that alive is important to me. The other facet is that it is a water conservation project as well. With my maternal grandfather building and working on many of the dams (in his era) and helping to make sure that Arizona got its fair share by giving testimony to the American Congress as it tried to deal with water rights for the Colorado River, this project seemed like a perfect storm for me.

The day of that gala came, a wonderful party that showcased how beautiful the house was to those who attended. The idea being that it will be rented out to the community for events. The home is an adobe house built in the 30’s, and it looked stunning on a hilltop with lights.

One of our needs for the event was traffic management. Since I believe that one cannot take on a job without being willing to do it, and no one wanted to volunteer for it, I went down and was traffic controller. It was a quiet time, but I had fun!  I was able to get a glass of wine to keep me warm and took a lot of selfies. I tried to photograph the house, but the phone did not really capture how beautiful it looked! 

There were fun shadows and I played with those instead:

I went back tot eh party only to be told that all the water conservation toilets were stopped up. Actually what it was is that the buttons for the flow were stuck and thus no one was able to flush – still, it was gross. Of course, it took 4 people to fix this issue, me to clean it, two men to look like dorks and watch, and my co-chair Debby to photograph it!

 

In the period where I had to live the life of a citizen – a life where, like everybody else, I did tons of laundry and cleaned toilet bowls, changed hundreds of diapers and nursed children – I learned a lot.~ Patti Smith

I did have a wonderful time, the grand majority of the volunteers were awesome and I  am proud of the event and my role in it!

 

the sleepers in that quiet earth… (day 4)

I woke up this morning in a jolly mood, probably because I was able to get relatively uninterrupted sleep for over 7 hours… considering I was averaging 4 – 5 hours, it was a vast improvement.

I lingered round them, under that benign sky: watched the moths fluttering among the heath and harebells, listened to the soft wind breathing through the grass, and wondered how any one could ever imagine unquiet slumbers for the sleepers in that quiet earth.
~Emily Bronte in Wuthering Heights

When I woke up, I listened to the silence in the still dark house, then took inventory of my body… which is a silly way of saying I paid attention to all my parts to take a chance to notice anything… usually it is the things like “headache”, “sore feet”, “happy heart”… Today it was just jolly, not from or at a certain spot, but just jolly.

I love silence, I love it very much. When I can be in silence with people is when I know we are good friends. Now, it isn’t that I demand we not speak, but when those moments that are silent, which can be as awkward as they can be beautiful… those moments are like a big reveal.

I love having a house full of people and waking up that next morning and taking my moment of silence, and being able to hear the love from the previous day still resonating off my walls.  I love those moments.

As I sit here writing about it, I realize that somehow I have forgotten this habit of mine this past year. How wonderful that it has returned.

A quiet moment
Let’s all sit, silently, and feel the magic in the room, the possibility of connection and the optimism we gain when we know we are in it together.
~ unknown

 

Another day without the dark tinge… sometimes, I imagine that the tinge looks like the gravelings in Dead like Me.

gravelings – creepy little shits