The 70273 Project

with a side of Jeanne Hewell-Chambers

Tag: in our own language 2

A Barn Dance, Kinda’

Barn2

Barn1

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Iool1complete2

Today The Engineer took me out behind the barn –
Okay, he took me over TO the barn,
where we hung In Our Own Language #1

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and In Our Own Language #2.

Iool2complete4

It is the first time I’ve seen
all three panels of
In Our Own Language #1 hung together,
and it is the first time I’ve seen
In Our Own Language #2 at all
because our ceilings are quite low
and we don’t even have enough floor space
for me to spread it out on the floor and
climb in a chair for a look.

A neighbor came by to see what we were doing
and declared the cloths “pretty”.
It was obvious he was eager
to get back to playing on
his new toy: the cutest little backhoe you ever saw.

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In Our Own Language #1 is Nancy’s first set of drawings.

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She drew them in June 2012.

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There are 167 drawings in set 1.

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In Our Own Language #2 is her second set of drawings

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created in August 2012.

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There are 454 drawings in set 2.

It was quite thrilling, really.

crossing the finish line (it only took a year)

Falls1

(view out the north window)

Falls2

(view from the south window)

A disclaimer before we begin: We live in what was once a fishing shack build on a waterfall on top of a mountain. While the scenery is hugely gorgeous, the house is small with ceilings that are unbelievably low – unbelievably, I tell you – which makes taking photos incredibly difficult. But today, I pushed everything to one side of my studio, folded down the top of each panel and let the bottom pool up on the floor, and hung each panel from the curtain rod in my studio. Despite the less than perfect situation, it was incredible being able to stand and see them hanging. It really is so different seeing the work this way as opposed to spreading it out on the floor and standing in a chair to look at it. The main thing I want you to know is that this lovely space does not offer ideal picture-taking opportunities. I trust you will take that into account and use your imagination as you look at the photos.

Iool2fullfrontall3a

In Our Own Language
3 panels, each measuring 60″ x 90″
hand stitched

In June 2012* my developmentally disabled my sister-in-law Nancy surprised and delighted me when she started drawing. I started right then stitching each drawing, eventually pulling the individual stitched renderings into a 3-panel piece I call In Our Own Language 1. It quickly became a series.

In Our Own Language 1 consists of 154 drawings. I finished those 3 panels (each measuring 59″ x 90″) just in time for them to be part of a museum exhibit in January 2012. The very weekend we delivered IOOL 1 to the museum, I began stitching In Our Own Language 2. It’s 457 drawings, and I just finished stitching this week.

Iool2 1fullfront1

In Our Own Language 2.1

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In Our Own Language 2.2

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In Our Own Language 2.3

The stitched drawings are arranged in the shape of a church window because with every fiber of my being, I believe creativity is sacred.

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Each panel is a sandwich of, starting at the bottom, a sheer window curtain, a collage of crocheted doilies,

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Nancy’s drawings that I stitched (457 total in this set spread out among the 3 panels), and topped off with another sheer window curtain. The top curtain is from my Aunt Rene’s house. She loved Nancy, Aunt Rene did, and Nancy loved her right back. There are stains in those top sheers, and I didn’t even try to get them out.

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Iool2closeupfront6

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You know how it goes: I had this vision, then set about gathering materials needed to create it, figuring out the meaning of the vision as I stitched. For me, In Our Own Language 2 speaks to individual perspectives and interpretations and how some people tut-tut at anything that’s not considered “fine art”. “Doilies? How commonplace and frivolous,” they might say. And “You call what Nancy did ‘drawings’? Harumph.” I can just hear them – I have heard them – and that’s probably why I made these 3 church windows far too large to ignore and dismiss.

* When I merged blogs, I lost all the comments in this and other posts which is a shame because there were some good conversations that – poof – disappeared, and after a good cry and a lot of time, I just had to sigh and move on. But hey, you’ll at least get to see the post and photos.

I’m including this post as part of Nina-Marie’s Off the Wall Friday, and soon enough (hopefully before this time next year), I’ll be telling you all about In Our Own Language 3.

[ ::: ]

Now listen: If you’ve ever said you were going to get around to writing your personal and family stories, stay tuned cause I’ve got just the ticket, and I’ll be telling you about it tomorrow or the next day (though it might turn out to be Monday. You know how that goes.)

nancy’s home for thanksgiving: a snapshot of the days

day one – 11/23/13:
(facebook post)

We have The Package, and as she’s said 572,367,892 times I’m the past 11 minutes: “I’m going home for Thanksgiving!”

Nancy23nov13

[ :: ]

day two – 11/24/13:
(facebook post)

Nancy takes a seat at the table while we fix supper. (A light supper, but you knew that because we “fixed” it.) Anyway, the elderly traumatized cat disappears; Phoebe the Corgi lays at Nancy’s feet in protective mode; and when the black cat rubs up against Nancy’s ankle, Nancy reaches down, picks him up (gently) by the tail, and repositions him away from her. Another lesson from Nancy: don’t hesitate to get things the way you want them.

[ :: ]

day three – 11/25/13
(facebook post):

Jeanne: Nancy, you’re a pretty good girl. (Important note: Being “pretty good” is the equivalent of “exemplary” in the Nancy Rating System.).
Nancy: Yes! I’m a pretty good girl! (Said with unmistakable enthusiastic agreement). Being with Nancy is a constant lesson in unabashedly loving yourself.

(journal entry):

she wets the bed (and she obviously has a huge bladder). i am hoping the cats are more more patient and tolerable than i’ve ever known them to be.

having been around the caregiving block a few times, i see that tending to nancy is like tending to a person with alzheimer’s. it is mentally and sometimes physically challenging. i find it exhausting on every level. as you can see, i have already lost the ability to segue. by the end of wednesday, construction of complete sentences will be cause for celebration. by the time we take her back a week from tuesday, i will have lost my ability to think as we commonly know it. quips will develop a sharp edge as the week unfolds. please bear with me.

[ :: ]

day four – 11/26/13:
(facebook post)

Nancydraws

some might call it unresponsiveness, nancy’s refusal to engage and answer questions while she is putting a puzzle together or drawing a picture, but me, i call it focusing on one thing at a time. yet another thing nancy could teach me.

[ :: ]

day five – 11/27/13:
(facebook post)

I take Nancy (aka Lazy Bones) to the bathroom to get her dressed and beautiful. We get her pajamas off, she looks at her naked self in one of the few mirrors in this house, and says “I’m a pretty girl.”

(journal entry)

though it is absolutely inexcusable and unacceptable, i begin to catch a glimmer of how easy it would be to yell at nancy when she restocks the magazines over and over and over again, as many as 12 times in a 5 minute span, taking your papers or magazines to add to her stack as she goes along. or to twist her arm or to shove her down into the chair when she doesn’t sit in the chair after you’ve asked her 6 dozen times. or to swat her hand when she pinches you (hard) for the umpteenth time for reasons you can’t begin to imagine because you’re in Protect Thyself mode. i totally missed the line for physical caregiving genes. let me plan something. let me figure something out. let me find resources. let me support the caregivers – yes, please let me do that – but know that as much as i adore nancy, i am just not cut out to do this day in and day out.

~~~

IOOL2 2b

at night after she’s in bed, i stitch along on In Our Own Language 2.3. every single drawing from our august 2012 visit (457 total) is stitched individually then amassed into a collage in these three 60″ x 90″ panels. In Our Own Language 3 and In Our Own Language 7 wait in the wings. I am quite eager to get started on them.

[ :: ]

day six, today – 11/28/13:
(journal entries):

i continue my daily habit of rising at dark thirty, alone time that’s now more vital than ever. i find myself in a near panic remembering how once upon a time, i knew when to cook what – i had a cooking schedule that maximized cooktop and oven space leading us to the big thanksgiving dinner at the appointed time. now i can’t even remember what we’re having to eat.

being with nancy 24/7 is a joy.
being with nancy 24/7 is a chore.

i love her – you know i do. i can and do romanticize what it’s like living with nancy. perhaps romanticizing is not exactly the word i seek, but since we picked her up on saturday, life has been reduced to the basic needs of food and shelter. words and complex thoughts are a luxury, requiring too much effort right now.

the romanticizing becomes second nature as i watch her characteristic behaviors, as i listen to her oft repeated words and sentences and turn them on their metaphorical head.

~~~

i tell you about how she looks in the mirror at her naked body and says (without a hint of prompting) “i’m a pretty girl.” but i don’t tell you how long it takes to convince her to shed her clothes in preparation for toileting or donning pajamas or clothes. and i don’t tell you about how she ignores the small bench i put in the small bathroom to give her something to prop on as we remove her shoes and socks (several times a day because the kind of disposable panties she wears don’t come with a snap) or how strong she is – something i found out the other day when she ignored the bench, preferring to use my head and back for support.

i don’t tell you about the repetitive motions she makes every evening with her thumb and its two neighboring fingers – a rubbing together that sounds like scratching when she does it against her pants leg, a rubbing together that feels like a sharp pinch and leaves a nasty bruise when she does it against my upper arms in an attempt, best i can figure, to take the shirt off my back.

i don’t tell you how she went into brain lock the night before last – likely a consequence of a day filled with overstimulation – unable to respond to the most simple of commands. i don’t tell you that she can’t toilet by herself, can’t shower by herself, can’t dress by herself, can’t brush her teeth by herself, can’t brush her pretty red hair by herself. is she high maintenance? speaking literally, hell yes, she’s high maintenance. speaking emotionally, however, my heart says she’s worth every labor intensive minute.

lest you feel the need to say something to me along the lines of how now i ought to appreciate the caregivers who tend to her needs day in and day out, let me assure you that i have always and still do appreciate them. i have taken care of many elderly relatives with various issues rendering them unable to live independently. i love the person, but i do not love full-time caregiving. ask me to research rehabilitation or assisted living facilities, and i’m on it. ask me to organize their meds or draft a packing list of what they’ll need, done. ask me to shop for them or my personal favorite: develop systems to take care of things needing to be done in ways that allows the center of attention to save face, and i’m all over it. i just don’t think i’m cut out for day-in, day-out caregiving – even with those i hold dear. i can do it, i just prefer to do something else. and even as i write this, i’m hearing that sharp voice chastising me and reminding me that i was born to serve. for once, i’m too tired to pay much attention.

so yes, i do hugely appreciate nancy’s caregivers . . . if only i knew who they are. nancy has resided at this one institution for about 19 years. it’s a place near where her mother and daddy lived when they were alive, convenient for them to visit and bring nancy home for holidays and weekends. the parents are both now deceased, and we and nancy’s other brother and his wife live pretty far away, making it rather a multi-day event just to go down for a visit. and the institution has instructed the caregivers not to talk to the family, which is a huge red flag for me. nancy doesn’t talk on the phone, and even if she did, she doesn’t run a fever and is unable to experience pain the way we do, unable to say “it hurts here”, so i count on the caregivers to notice when something’s wrong, and i’d like to know.

i’d love to know the names of the caregivers. i’d love it if they’d identify themselves when they answer the phone instead of making me ask who i’m speaking with. i’d like monthly (weekly or bi-weekly would be fantastic.) check-in emails letting us know how nancy is doing. i’d like to know that the caregivers have basic first aid and cpr certification. i’d like to know what made nancy laugh that week, what seemed to upset her. i’d like to know her favorite color of the week, and which necklace she seems to especially like. i’d like to know that they are giving her the postcards i send her every week (when we picked her up, there were several postcards in the office where she is not allowed. i’ve never seen any of the cards or postcards in her room.) i’d like to receive a picture of her every now and then. i’d like to know what her daily schedule is like – what time does she get up, what time does she get on the bus to go to ARC, what time does she return home? does she still know the day of the week by what she has for breakfast? i don’t know much of anything about nancy’s day to day life, and i don’t really think i’m asking too much.

there seems to be an attitude of judgment by “the school” as we call the institution where nancy lives. because we cannot get down there nearly as often as we’d like, it seems they judge us not interested, not involved. that could be easily remedied with some good old-fashioned communication.

we don’t even know the name of the current administrator . . . which is fine, actually, because 2 or 3 (maybe more, who knows?) administrators ago, the reigning administrator blackmailed us, calling us into his office to say that nancy would be evicted if we didn’t pay $2,000.00 a month directly into their general fund – not money that would benefit nancy, mind you, $2k to go into the facility to use as they saw fit. i am still appalled.

i am not insensitive to how busy the caregivers are – in fact, another thing i’d like to know is that the facility understands caregiver burnout and takes steps to avoid it.

so yes, just as there are two sides to every story, there’s another side to nancy’s life, and i long to do something about it. i’ve been trying to do something about it, actually, but things move very slowly when you have no voice – no agency – in your own life. we are her agents, and i am tired of being quiet for fear the powers that be will take it out on nancy.

~~~

turn your back, and she’s gone or she’s picked up something you don’t want her to have. she does stay in bed at night, and for that i am eternally grateful because we really need our rest after a day with nancy.

~~~

Nancywithherboxes

once upon a decade, she was the puzzle whiz. now she’s the drawing whiz.

Andy says drawing has taken the place of puzzles as nancy’s creative outlet. I see puzzles as perhaps creative problem solving, a different kind of creativity from the drawing. filtering everything through the lens of my experience and knowledge base, i wonder if that doesn’t follow the course of my female development: from the comforting (and necessary) structure of to do lists to freeform. from stitching cross stitch images printed on cloth to assembling disparate pieces of cloth together to express something i often can’t articulate until well after the piece is completed.

~~~

magazines in puzzle boxes. containers. holding things, sometimes to cover visual clutter and chaos. nothing is sorted. pencils go in the same box with puzzle pieces and magazines and drawings. there is a coming together that, if i squint my eyes, could be physical representation of what is commonly known as integration. no more compartmentalization, instead, it all comes together into the woman who is nancy.

~~~

it is true that i put a spin on things nancy says and does, often turning them into sticky note reminders of Important Things. true, it is spin, and it’s also true that it’s true. as time consuming, as disruptive, as exhausting as it is being with nancy, the aggravation and exasperation is outweighed by the shift in consciousness and attention i experience when i am with her. it is all true.

[ :: ]

Jeanne Hewell-Chambers is just too tired to dress up the truth in a pretty little frock.

I See Them Everywhere

The Short Version:

  • I continue to stitch the second set of Nancy’s drawings.
  • A set = the drawings she makes each time I visit, that is to say a set = a visit.
  • In Our Own Language 2.2 is what I’m currently working on. It’s the second of three panels of the second set.
  • When I work on it, I see likenesses pretty much everywhere.

The longer, illustrated version:

They say when you’re a hammer, everything looks like a nail.
I guess that’s why while stitching In Our Own Language 2.2 and creating a base of collaged doilies

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I see a collage of leaves.

Leafcollage

And while I seal the four layers together with scatter stitches

Scatter

I see scatter stitches of pine straw.

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( :: )

I had to take a break from stitching these big pieces (each panel is 60″ x 90″ and four layers) and stitch smaller pieces instead because working on the rather large panels in the In Our Own Language series is hot work, and we don’t have air conditioning. It’s cooling off now.

Let’s Get Right to the Point, Why Don’t We

Putting things off is part of my process.

When I write, I transcribe the voices. When i stitch, I spend time deconstructing the image pinned to my imaginary design wall to see how it’s done and where to start. I’m not talking about that – that’s part of the process. But I’ll tell you the flat-out truth: I do procrastinate when it comes time to do something I don’t want to do.

Like, oh I don’t know, maybe CREATING BIAS STRIPS. I put that off as long as I could, but we have company coming for supper tonight, so I need to move forward and clear the table so we have a place to eat.

Don’t think I didn’t consider using tv trays, though.

For two nights I read about how to create bias binding. I did my (dreaded) calculations, but today when I took a deep breath and started, I never could get the square cut. It’s a spatial concept, you see, and I don’t do those well.

Just like I can’t do a lot of things in yoga on account of I have short arms.

Bias2

I have only a finite amount of fabric (that was purchased in another state, mind you), so it really didn’t take me all that long to hit the Pffffft Point and just started cutting. Oh sure, I cut at a 45-degree angle and all that, but the instructions from Those Who Know About This Kind Of Thing say I should have little bitty points where I join 2 strips together.

Bias3

Well, I didn’t. I had big points. Big, I tell you. If I covered the tip end of those points with a little bit of wadded up tin foil and sat the whole thing on top of the tv, I’d probably get much better reception. And you know what? I’m fine with that because while I may never make an A in bias, and while my bias points may be larger than your bias points (which may or may not be a metaphor.) (I’m from The South, so I’m used to being told that I have big biases.) (Mostly from folks who’ve never even driven through here.) (But we’ll talk about that later.), I still got the job done.

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And I only have to do it two more times. (Hint: this is not a cause for celebration.)

I tell you one thing, thought: if I never have to deal with bias again, I’ll die happy . . . which may or may not be another metaphor.

granting myself leniency

Stainedglassfabrics

i’ve been down the mountain for a few days, helping my mother and daughter with a few things and tending to some business. there’s never much time for editing or stitching when i’m down there, (not much time for journaling or even thinking either, for that matter), but i did manage to sneak in a quick – and i do mean quick – trip to the fabric store where i found a few pieces that will be just what i need (at least i think i need at this point) to finish out In Our Own Language, set 2. i’m counting that short-lived shopping spree as forward motion.

it’s about time. really.

Doctor says she still thinks this second round of sinus infection, complete with ear infection, stems from that knock up side the head I got in Denver about a month ago. I don’t know, just hope this antibiotic works and works fast. Takes 1.5 hours each way to get to/from the doctor’s office now that we live on top of the mountain. Curvy, mountainous roads, you know. That’s almost half day just in travel time.

Cake

Spent the afternoon baking a cake and cooking The Birthday Boy Andy’s favorite foods for supper. The cake doesn’t look like much, but you know these that fall out of the pan in clumps taste the best.

Set2basted

All that left precious little time to hold a needle and thread, and as usual, I bump into things I hadn’t thought about. This time it’s wanting what is now the top side of the work-in-progress to be the backside of the finished piece. So I treated it like I take pound cakes out of the pan: put another piece of fabric on top, then basted the doilies down. Will turn it over, clip basting threads, stitch doilies in place, then add Nancy’s set 2 drawings on top. There’s got to be a less time-consuming way, but it hasn’t come to me yet, and I don’t have time to wait.

It’s times like this I wonder why I can’t be content to just sit and read books.

ready, set, . . . um

Composite2

These are Nancy’s set 2 drawings – all 454 of them – stitched and ready to be amassed on the backdrop of the doilies then sandwiched in between sheer curtain panels. I should’ve started creating the doilie collage today. I meant to, really I did, but instead, I just sit here sketching new ideas for more hymns of cloth. Tomorrow. Definitely . . . well, maybe . . . probably . . .

hooked

i’ve finished stitching Nancy’s 454 drawings in set 2, and now that we’re home for a while, i’ll be pulling them altogether in In Our Own Language, 2 this week.

Complete1

i’ve been amassing a collection doilies for this one, and truth be known, i’ve never really liked doilies. i crocheted a lot of afghans – in fact, my husband’s grandmother and i had such similar tension, we could pick up each other’s crochet and never tell where one started and the other left off. it’s the funniest thing though, in that way funny way that doesn’t make you laugh: as i’ve quietly acquired these doilies over the past 5 months, i’ve come to really enjoy looking at them . . . and i suspect that i’ll miss going on doilie treasure hunts.

Doilie1

some seem downright happy and carefree.

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Doilie4

some seem to represent individuals in community, something that can sometimes be tricky.

Doilie3

some make me think of fields freshly plowed and ready to plant.

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and some seem like optical illusions and threaten to make my head hurt.

Doilie7

Doilie8

some leave me gobsmacked with their intricacies.

Doilie6

Doilie9

and some seem quite fragile . . . but you’d be surprised.
(i am leaving the stains and discolorations of age because it makes them real somehow.)

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i see spiderwebs in some.

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some make me think of mandalas, and i swear just looking at them calms me.

Doilie12

some beg me to ponder negative and positive use of space.

Doilie13

some are crocheted metaphors.

shoot, maybe all are crocheted metaphors. my father-in-law always said i read too much into everything.

what makes us smile

Nanchy1

Maybe she’s in a bad mood, but then Nancy doesn’t do bad moods, so who knows why she’s not smiling.

Nancy2

I pull out the sketchbook and pens, always giving her a choice since she gets to choose so few things in her day-to-day life. She selects the purple pen (because purple is still her favorite color) and without saying a word, she begins to draw. She doesn’t stare at something, wondering how to recreate it on the page; she doesn’t think about what she’s going to draw, she doesn’t ask me what I want her to draw. She just puts the pen to the paper and draws, our Nancy does, and it’s a sight I’ll never grow tired of.

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And as I turn to a clean page for her seventh drawing, she’s smiling.
Art does that for a girl.

Nancy4

She fills the page with her drawing – very rounded, and flowing, very similar to the first set
of drawings
she did in 6/2012. Then she comes back and obliterates parts of the drawing with layers of heavy marks. “I like it,” she says. Then “I’m good at this” followed by “I love you.”

“I love you, too,” I tell her. Then, probably because of the good music they were playing at the restaurant, I say “Nancy, do you remember when you and I would go back to your room and you’d put on your favorite records and we’d dance and sing, just the two of us?” Of course Nancy doesn’t grasp the concept of memory or passage of time, at least not that we can tell. Maybe she charts time differently than we do. Maybe she’s drawing the memory of us dancing and singing as I talk about it. These lines and marks seem to be becoming her vocabulary, you know, a way for her to express things she can’t articulate in words. Nancy’s not bound by calendars and clocks and words.

We met Michelle this morning, Andy, Nancy, and I. As we were leaving, Michelle said “Goodbye, Nancy” and Nancy reached out and grasped Michelle’s hand, looked her in the face, and said, “I love you.” Nancy’s not bound with societal norms and fears either.

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In Expressive Drawing: A Practical Guide to Freeing the Artist Within, Steven Aimone says a drawing is finished when nothing else occurs to you or when you really like what you see.

(It’s true that I occasionally view that frenzied obliteration, those layers and layers of lines in terms of how much time and thread I’m gonna’ need.)

NancyInConvertible

And when you’re finished drawing, it’s time to go to ride in the convertible, of course. Another thing that makes a girl smile.

[ :: ]

The museum exhibit closes tomorrow, so I’m a day early and have nothing to post about in Nina Marie’s Off The Wall Friday, but I’m taking a cue from Nancy and tossing the calendar out the window.

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