Sunday, July 05, 2020

Sunday Serenity --Poems for Life

Desiderata by Max Ehrmann

There is just something about having poems read aloud to you.
Especially by someone who knows how to read them effectively.
And with a voice like buttered toast.
I've listened to several on this channel but this one is really speaking to me in my current trials.


Wednesday, June 17, 2020

Library Loot June 2020

Library Loot June 2020
The Public Library here in Longview, Washington has just begun accepting returns of items still in our possession at the time the shelter-in-place rules came into play locally in late March.  And they are accepting placement of holds and the checking out of up to five items for six weeks.  The catch is there is still no going inside.  Delivery of the items is via drive through and the arrangements need to be made ahead of time by email or phone so the items can be prepared for you on the day of your arrival.  Prepared includes checking them out to your account even though you are not there to present your card and placing them in a sack.  When you arrive in the parking lot you remain in your car and someone approaches to request your ID and then the bag prepared for you is brought.  In this case since I don't drive my sister was my designated retriever as arranged via email earlier in the week.

The four items:

  • DVD of the movie RBG about Ruth Bader Ginsberg.
  • Book on CD: The Power of Vulnerability by Brene Brown
  • Tree book: Islam in the Modern  World : Challenged by the West, Threatened by Fundamentalism, Keeping Faith With Tradition by Seyyed Hossein Nasr,
  • Tree book: The Catholic School by Edoardo Albinati

Islam in the Modern World was a surprise as it was not one of the items I placed on hold.  It was related closely by subject but yet very different.  The one still showing as on hold in my account is: My Isl@m : how fundamentalism stole my mind--and doubt freed my soul by Amir Ahmad Nasr. 

Ah, same last name. 

This one is a memoir of someone extricating themselves from a fundamentalist religion and I collect these stories to compare with my own experience.  I find that all the fundamentalisms have more in common with each other than with the mainstream or traditional practice and faith of their own religion.  Tho I'm disappointed in having to wait until next time for the memoir I'm quite interested in the overview of the same issue by the Islamic scholar.

The other tree book was the first item I put on hold as soon as news came of the plans for drive-thru checkout. I had The Catholic School checked out from late fall right up until about a week before the Library closed for the duration.  Tree books are very difficult for me to read and the bigger they are the harder it is to control the placement of the page in relation to the angle of the light and the distance to my one eye that can still see text with 3x magnification. 

This book is over 1200 pages.  It takes me five to seven minutes per page and my wrists and arms tire after half an hour.  So do the math.  It is still not available in audio at the Library of Congress talking books or BARD and the Kindle is going for $19.99.    Get real!  I've discovered via on-line searches that the ebook is available through the Overdrive/Liby systems that contract with local libraries but the Longview library has not acquired it for their Washington Anytime Library.

I'm really excited to get back to The Catholic School and am hoping I won't have to start over.  The book is translated from the Italian and is a coming of age story that is based on events in the authors own life that are centered around a horrifying national scandal that took place in the 1970s when several young men who had attended the same Catholic School as the author abducted, tortured, sexually assaulted and murdered multiple young women.  Albinati attempts to analyze all the cultural influences that contributed to the psyches of these young men.


Monday, June 15, 2020

Neither One Nor the Other--Maybe Both?

Infinity Scarf/Shawl
I made this Infinity Shawl in approximately three weeks.  I started it the week of May 20th a few days after I'd 9 finished for the month of May at that point.  I allowed myself to start this new project as a reward and with a promise I was going to work it steady until done. One of my motives was to find out how long it took me to work through a whole cake of Red Heart It's a Wrap.

I was estimating a week but it took about three although the events around the final breakup of my marriage ate into crochet time and near the end of the cake it developed a snarl that took me over two days to untangle.  So I think a fair estimate is 10-14 days of steady work averaging four hours per day.

One of the reasons I need to know how long it takes is ever since I ordered and began working with my first It's a Wrap I began collecting the colorways including multiples in my favorites.  I've already made another infinity scarf with a hood and a circular collar tent dress thingie with large mesh for wearing over summer outfits or swimsuits.  I've not posted pics of either of them because they are in the all-but-finished bag awaiting tail tucks and other finishing touches.  I've also got two more shawls on the hook--one a triangle the other a mandala.  And I've got plans for two or three shawl and skirt matching sets.

Red Heart It's a Wrap - Action

The Mandala shawl I'm making is with the colorway Action and I've ordered a total of 5 of that colorway in the last year.  I'm intending to make a skirt and a sleeveless top out of it to make an entire outfit with the shawl.  There is another colorway in blacks and grays I've collected for the same purpose.

This yarn is a lace weight cotton/acrylic blend that creates a supple drape and is soft to the touch.  I delight in working with it.


Sunday, June 14, 2020

Sunday Serenity - The Andy Griffith Show Theme Song

Listen to this three or four times in a row and try to stay glum.  Can't be done.

Last Sunday I went to my husband Ed's apartment  in Kelso to retrieve the things I'd left there over the last two years of Sunday visits and occasional weekend overnights.  We had the conversation that ended our 41.5 year marriage.  Not a serene Sunday.  No Sir.  (for the backstory see these three poems in this order: Piles of Painted Echoes and My Heart is the Lake of Fire and Who Am I Without You? )

This weekend my Mom resumed her weekend visits with my brother's family in Portland OR.  Even before she left Friday afternoon I'd already started covering her bed with the contents of the back-and-forth-bags and the plastic dresser I'd brought home last Sunday.  I added to all that the clean clothes that had accumulated from the laundry over several weeks and other wardrobe items that were not stowed in their homes.  

Contributing to the disorder was the habit I'd developed of using items out of the travel bags and stowing clean clothes back in them or piling them on top.  It generated a sense of being neither her nor there.  Along with a deep sense of homelessness.

Before midnight Friday I'd cleared Mom's bed of the first pile having bestowed order upon my wardrobe, accessories and personal items.  Not perfect yet but getting there. I set up so I can continue to sort and organize smaller containers during the week Mom is home without covering her bed.  

I did not rest on my laurels.  I immediately began a new pile on her bed.  This time of craft paraphernalia from the room across the hall which is my office/crafting room.  It has been the same situation there with the back-and-forth bags and boxes of crafts and writing stuff including electronics.  This was a more complex project and took me until late this afternoon to get Mom's bed cleared. There was a lot of going back and forth between the rooms and in the end I've established a similar situation in which I can do fine-tune sorts of smaller containers without commandeering Mom's bed.  At least not for more than a few hours in the afternoon.

The irony did not escape me that with Mom returning to Portland for the first weekend since the shelter-in-place regimen began in mid March I might have been schlepping those bags over for our first sleep-over in three months but instead I'm busy unpacking, sorting, organizing and stowing all manner of stuff: Clothes, crafts, health-and-beauty aids, electronics,books, office/writing paraphernalia -- along with thoughts, feelings and memories.

Since I only have the stamina to stay active about an hour at a time I took sit-down breaks to crochet and/or watch videos.    Altho there have been a few others I've been nearly tingeing on Season 1 of The Andy Griffith Show.  Since this is a show that aired during my childhood and Ron Howard who played Sheriff Andy's son is only 3.5 years older than me this is a total nostalgia kick.  

It is also helping me to remember who I was before I became who I am and grounding me in my own history and memories.  In other words it is helping me find hope that there is a viable 'after' a devastating ending of a 41.5 year marriage.  I may have lost my best friend but I have not, as I half expected to discover, lost myself. 


Friday, June 12, 2020

Finished Crochet in the Month of May

Crocheted Circular Collar Tunic Top
Actually this one was finished in December for my Mom's Christmas.  It ended up in the same laundry load as the rest of May's  finished items because I was using it as a model for the one pictured below and it needed a wash after all the handling and dropping on the floor it endured.

This was an original design.  Inspired by pictures of other projects I saw on social media but I sculpted it by trial and error rather than following any of the patterns.

They were both made with Lion Brand Comfy Cotton.

Crocheted Circular Collar Tunic Top
This one was made for Mom's friend who helps in her care when she spends the weekend at my brother's.  I began it in early March and finished it in mid May. Mom is returning for one of her weekend visits for the first time since mid March today.

I want one of these myself now but I won't allow myself to start it until I finish at least one significant WIP  including finishing touches and one item pulled from the 'all but finished' bag pictured at bottom of this post.

Crochet Bag for Travel Blanket

This was the travel blanket bag I made inside a week in early May that inspired the getting stuff finished project that ensued.  The post I wrote about it is linked in the caption

This was made with Lion Brand Cobo in magenta.  The mesh was created with double crochet alternating with single chain with the DC made into the DC below rather than the chain space.

I want to make several of these for myself now.  For WIP kit bags and water bottle/thermos bags but I've made rules for myself about starting new projects that involve finishing something of similar size/complexity plus something out of the 'all but finished' bag.

Crochet Striped Winter Scarf

This scarf was begun in 2014 to go with my favorite winter jacket, a sky blue, quilted nylon with sleeves and hood that could zip off so I could wear the vest even in spring and fall.  It was a size 3X though and after I lost the weight down into 1X territory, my sister said I looked ridiculous in it and it was dangerous as it kept catching on door handles and other things I walked past.  I eventually agreed and gave it away.  A couple of years later she got me a sky blue fleece jacket and that inspired me to get back to work on this scarf.  I finally finished the crochet a year to year-and-a-half ago and stuffed it in the 'all but finished' bag.

This was made with lace weight baby acrylic.  I can't remember the brand.  I'm especially pleased with this one as I invented the stitch I used.  At least I have yet to see it represented in any of the thousands of crochet images, tutorials and patterns I've looked at in the years since I devised it.  I call it the LOL stitch because it looks like a line of cursive Ls and Os alternating.  I make the stitch by creating a row of six-chain loops on one pass and on the next pass I twist the loop before stitching a single crochet in its top.  I've been thinking of putting together a photo tutorial for it.  I don't know how to do video tutorials yet but am thinking of trying to learn.

Crochet Infinity Scarf

This is an infinity scarf made from a single cake of Lion Brand Mandala.  It's made with rows of two-chain loops with single crochets inserted in the loops.  I made it ruffle by increasing the number of loops every few rows as I worked out from the middle.

Crochet Winter Hood
This hood began as a scarf but I miscalculated how much yarn was in the partial skein given me by someone.  when it became clear that it would not reach a proper length for a scarf I set it aside for years.  When I encountered it in the 'all but finished' bag in my scavenge hunt for quick things to finish, I remembered it was really in there to be frogged as soon as I could do it without feeling too bad about it but while I held it I got the idea of turning it into a hood by adding the white edge with the frou frou rabbit tails.  It was the only other velour yarn I had and also a partial skein from the same friend.

That velour yarn is soft to the touch and for that I enjoyed working it but it is chunky and much too warm to wear for Washington winters.  Besides I have no coats or jackets in any shade of green.  This is a very dark green and looks very Christmassy.  But I doubt I'd ever wear it and I don't know anyone who might like it so not sure what I'm going to do with it.  Maybe points to the possibility that having my own Etsy store is now a viable concept as several have suggested lately.

Two Crochet Cloche Hats
These two Cloche hats were made with Patton's Grace.  I'm chagrined to say that I finished the crochet on them nearly two years ago and started wearing them without tucking the tails.  I hid the stitch saver under my hair.  So they didn't spend much time in the 'all but finished' bag but were rounded up in my scavenging for quick things to finish.

Torso Sized Trash Bag Full of Fiber WIP Awaiting Finishing Touches.  Many for Years.

Next time I post pictures of finished items pulled out of this 'all but finished' bag I'll take another picture of it to reflect it's diminishing size instead of borrowing the photo from the post about the finished project that inspired the ongoing finishing spree.


Monday, June 08, 2020

Who Am I Without You?

Who Am I Without You?

You held up the mirror I saw myself in,
Then you flung it into the sky with a spin.
Now I don't know where I am.

The light in your eyes when you gazed upon me
Kept my heart beating true only for you.
Then you closed your eyes

And now I can't see.

The light in my eyes when I gazed upon you
Was the fire in which your power grew.
Until I saw you true.

You saw that I knew when my eye-light dimmed
And you turned away with a cruel whim.
And my world caved in.

You saw my dismay and turned away,
Crawling inside the cave of your mind.  Your way
Of saying "My way or the highway"

I named my pain.  You called me insane.
I make out you're wrong
You make me gone.

How can I be when you won't see me?

The only way back is to agree with you.
A path I've traced more times than a few.
But now I'm new.

This time the pain was a fire that burned
Away all my yearning for your return.
It scorched the path back.  A Lesson now learned.

Now I am free to look for me
In the wind blowing across the deep blue sea,
In the rain trickling down to the deepest roots of the tallest trees,
In the snow atop the mountain peaks,
In the waves that crash against rocks on the beach.
In the sun that shows its face to me
whether or not I agree to agree.

These are the mirrors God holds up
To show me just how He sees me:
Persistent and Brave,
Resilient and Deep,
Rooted and Giving,
Creative and Wild,
Resolute and Strong.

With His gaze he bestows His grace on me
Like a never setting sun on a gentle breeze.
And through His eyes I see my true Me..

You are lost to me
But I am found.

(for the backstory see these two poems in this order: Piles of Painted Echoes and My Heart is the Lake of Fire)


Tuesday, May 19, 2020

Finishing Joy

Crochet Bag for Travel Blanket

Earlier this month my sister asked me if I had any pink yarn or thread in my stash. 

Well, duh, yeah. 

With several individuals on my potential giftee list having affinity for either pastels in general or the pink/red spectrum, I had accumulated some.  Not quite as much as the blue which is mine and Mom's favorite or the purple which is Carri's but still a significant selection.

She was asking because she'd bought a travel blanket for a friend on discount that was missing the carry bag it was supposed to come with.  Carri showed me her own travel blanket in its bag and asked if it was feasible to crochet a carry bag for it and about how long it would take and how much I might charge her for it.  She was hoping to see this out-of-town friend in person sometime in May.

I spent the next couple hours pulling my stash bags out from under my craft table and going thru them looking for possible yarn and thread in shades of pink or colorways featuring pink.  After dinner that evening I had Carri look them over and she settled on the Lion Brand Cobo in Magenta which was very close in color to the blanket itself.  It was a good choice for its fiber content of cotton and bamboo blend.

Before I went to bed that night I had crocheted the bottom circle and the first two rows of the tube.  The bottom took me several false starts before I got the right starting number of stitches in the center so that it continued to lay flat until it reached the required six inches across.  Turned out to be twelve.

The next morning I added several rows of the mesh--double crochet, single chain, double crochet--before I was needed for Mom's shower.  I showed it to Carri and told her then that instead of cash I wanted her to take me yarn shopping at a discount store she had messaged me photos from last summer and to one of the branches of the Fort Vancouver library system where I could sign up for a card and for having items mailed to me because of my disabilities preventing me from traveling to pick them up in Woodland. 

Both excursions would have to wait until after the need for quarantine on behalf of Mom is past.  That might be longer than the official shelter-in-place protocols remain in place since our 88 year-old mother is extremely vulnerable to the effects of the virus.

By Wednesday evening, May 6, I had finished it, including all the finishing touches like tucking tails and adding the elastic headband for a drawstring.  That was five days since I began after dinner on Friday and finished shortly after dinner on Wednesday. 

Little to no work got done on either Saturday or Tuesday as those are Mom's shower days for which I'm on duty in the bathroom with her for three hours followed by another two hours making and supervising lunch.  That means it could easily be a three day project. Even less if I super focused. But that super focus is a power of mine I must use with care as it tends to push out all other activities from my life--reading, writing, researching, videos, socializing, chores, self-care, eating, sleeping...

I was eager to start another one or two or three for myself.  I pictured them as carry bags for crochet project kits that will hang on my wrist while I work.  Or as bags with shoulder straps for my coffee and water thermoses.

But I knew I needed to rein in that urge as I've got dozens of WIP.  In fact the bags containing WIP are beginning to rival in volume the bags containing unkitted yarn and thread--somewhere in the neighborhood of 66 gallons each. 

I've been working steadily at finishing projects since I began the holiday rush last fall and resisting starting anything new until I finish a significant number of them.

The real story here is that of the thrill I got from starting and finishing one project inside of a week.  It felt so exhilarating I even asked myself is Joy actually experiencing joy? 

If so, I concluded, I  needed to finish more projects more often.  Then it occurred to me that I had enough projects scattered among my WIP bags with from under an hour to under six hours of work to complete that I could finish something every day for a month or more.  Starting with this large trash bag containing things I crocheted for myself and never got around to tucking the tails and other finishing touches like buttons, bows, belts, tassels etc.

Contained in this bag is also a few things that I didn't make myself including kit bags that need minor repair but it is over 80% yarn and thread crochet WIP.  Sitting in Mom's recliner it takes up significantly more room than her torso and head.

Instead of starting a finish one a day agenda tho I decided to return to the project I'd interrupted to do the bag for Carri's friend.  That was a sweater identical to the one I made Mom for Christmas for her friend who lives with my brother's family where Mom spent weekends before the quarantine protocols kicked in. 

We had implemented shelter-in-place on account of our elderly Mom in mid March about a week before our Governor Inslee instituted it statewide.  And about two weeks after I'd targeted the sweater for Mom's friend as my next focus.  I'd hoped to have it finished by the end of March.  I just finished it a few days ago. 

I backed off crochet in April in favor of reading and discovered or re-discovered another old thrill:  finishing novels in less than a week after starting them.  In fact after I'd collected a significant number of finished titles across my devices and reading aps I set about counting them and discovered there were over fifty titles and the ratio of fiction to NF was better than three to one.  But that's a topic for another post.

Shortly after the read-a-thon in April though I began to gravitate back to crochet for a bit most every day with the focus on that sweater for Mom's friend and I knew that I needed to keep my focus on that until it was done because focus for me is a fragile thing.

Yes, fragile.  in spite of having just described it as nearly a super power of mine.  The fragility is in keeping the balance between flitting like a butterfly from shiny object to shiny object creating WIP and other clutter that takes over my space and the hyper-focus that can take over my life like bindweed a yard.  The difference is between owning the focus and being owned by it.  This issue is part of my autism spectrum profile.

But when I finished it the other day, including tucking the tails just hours after taking the last stitch, and handed it over to my sister to be laundered she informed me that she had just done the gentle cycle load so it could be a week or more before there would be enough items to warrant another load.

When I suggested Mom's sweater also needed washing since I'd been using it as the pattern, had handled it a lot and dropped it on the floor where it picked up fuzzies and who knows what all else, she said the two together would balance the load so she might consider it but I told her to hold off a couple days while I collected nearly finished WIP with similar fiber content to see how many of those I could add to the load inside of a week..

Last night I handed over three hats and three scarves after about three hours of effort.  All of them I'd made for myself.  Several of them I'd been wearing without having tucked the tails; even with the stitch savers still protecting the last stitch.

I decided to wait until they were all back from the laundry before getting pictures.


Saturday, April 25, 2020

My Brain on Books XXV

I am reading for The Office of Letters and Lights the folks who bring us NaNoWriMo today as I love what they are doing for literacy with their Young Writer's Programs and because I've participated in NaNo every year since 2004.  I have been blessed to have it in my life and would like to give something back if only kudos and link love.  I'm putting this plug at the top in hopes some who stop by will check out their site and see all the great things they do to foster love of reading and writing and story in kids. 

This post will be organized like a blog inside a blog with recent updates stacked atop previous ones. I may be posting some updates on Twitter @Joystory and the Joystory fb fanpage. But this is where I do anything more than a line or two.  Including mini-challenges that don't require a separate post..   

3:00AM - This will be my last update.  Going to go sit on my bed and read Funny, You Don't Look Autistic by Michael McCreary until 5 and then get some sleep before time to wake Mom at 9am.  Usually that would be 8am but we're letting her sleep in because of how late she got to bed.  There is always the chance she will wake at the usual time tho so I still have to set my alarm to get up and check on her at 8.  Once I know she is up I can message my sister so and then I'm free to go back to sleep until noon.

2:22AM - Started Winds of Fate, the next book chronologically on Lackey's Valdemar timeline immediately after finishing By the Sword.  But I only read for about half an hour before deciding I wanted to go explore the Dewey Thon site and then update my Thon post.  Can't believe there is less than three hours left of the Thon! And I still haven't started reading any of the autism spectrum book which I'd intended to give 50% of Thon time to.  But that expectation was based on finishing the Lackey by noon.  I knew based on the past months experience with the Valdemar world books that I would not want to interrupt one to flit among my 'stack' as has been typical thon behavior for me.

Reading the Mercedes Lackey books has become the thing my husband and I have been doing 'together' since February and after we lost our weekend visits due to the isolation protocol last month this joint reading project has become almost fanatical. We update each other via Messenger several times a day and via phone calls several times a week.  It's been years since I've read so many novels so close together.  Have been averaging two to three per week since January.  And this has been in addition to the other reading--literary fiction and various NF.

11:33PM - Just finished By the Sword.  Read what was probably the last five pages after lights out for Mom.  That was at least two hours later than typical for her.

7:30PM - Still reading By the Sword but closing in on the last 15%. My sister just back with KFC chicken pot pies and root beer floats.  My treat partially as celebration of the read-a-thon and to insure no dinner clean-up but mostly to make amends for destroying last night's dinner and forcing an emergency replacement of the oven which had been on the agenda for sometime in the next year or two.  We just really didn't need the added inconvenience this week!

5PM - Just back from lunch cleanup.  I meant to listen to By the Sword via text-to-speech while making lunch but after realizing how mentally fatigued I was and feeling a loss of confidence after last nights BIg Bummble I thot it best not to divide my attention in the kitchen today. I did read the ebook on the screen while eating my lunch after turning off the burner and griddle.

I thought I'd be finished with By the Sword by now as I've read several of Lackey's Valdemar world books this past month and most of them clocked in at six to eight hours.  Just checked page counts of the book and several others and sure enough By the Sword is nearly twice the length of the typical ones at nearly 500 pages.

3:33PM - Still reading By the Sword.  Just exited bathroom.  Mom dressing.  This is my thirty minute rest before starting the traditional shower day tomato soup and toasted cheese sandwiches lunch prep.

1:11PM - Still reading By the Sword.  Still waiting for the call from Mom. Discovered she is still in recliner. Apparently she got caught up in the 'drama' of listening to my sister make phone calls all over the NW from south of Tacoma, Washington to Salem, Oregon looking for a replacement for the aging oven that I dealt a death-blow to last night when I left the kitchen scissors on the oven door when I closed it and their plastic handle melted into a toxic lake under the element and suffused the six salmon patties and full sheet of sweet potato tots with noxious fumes along with the whole upstairs once the over door was opened.  Now we are without an oven and my sister had just done the monthly Cosgo shopping which included a lot of menu items that require an oven.

11AM - Still reading By the Sword.  Went back to sitting on my bed after doing the Opening Survey. Have just moved back to my desk to do update and then prepare for Mom's shower.

5:55AM - I got up at a quarter to five and fixed a thermos of coffee and then settled back on my bed among piles of pillows and blanket since the house heat wasn't due to come on for a couple hours.  I started reading By the Sword by Mercedes Lackey on an Android tablet.  But apparently i allowed myself too much comfort too soon after waking from too short a sleep as I dozed back off.

Opening Survey!

1) What fine part of the world are you reading from today?
Longview Washington USA.

2) Which book in your stack are you most looking forward to?
Funny, You Don't Look Autistic by Michael McCreary

--see yesterday's post With Respect to the Spectrum (Revisited)

3) Which snack are you most looking forward to?
Toasted cheese sandwich and tomato soup

4) Tell us a little something about yourself!
At least half a week before Governor Insley made it official last month, our family went into isolation in order to protect my elderly mother.  So the four of us--myself, my sister and her twenty-something son and Mom have been holed up for nearly forty-odd days.  Before that we were used to weekend respite when Mom visited my brother's family from Friday afternoon thru Sunday evening.  Now her care becomes a 24/7 challenge as she needs as much attention as a toddler.  My two major duties have always been making and serving her lunch M-Th and supervising her shower on Tuesdays, the occasional dinner for the family, loading dishwasher whenever needed and supervising bedtime S-Th.  Now lunch and bedtime are all seven days, dinner at lest 3 and there is now a second shower on Saturday.

My shower-day duties can start as early as 11am and last as late as 4pm since it isn't over until the kitchen is cleaned up for whoever begins dinner prep between 4:30 and 5.  This is going to affect the read-a-thon for me in a big way as I will not be able to devote my attention to it uninterrupted as has been my habit.  Tho I still hope to cram a lot of reading in to the cracks of time by using the very portable ebooks and audio books on my Android devices.  It is a blessing that Mom still does most of the work of her shower.  I just need to be in the room for those things she can't do herself, to get her back on track if she gets confused and to monitor her well-being--stamina, mental state etc.

5) If you participated in the last read-a-thon, what’s one thing you’ll do different today? 
This is my 25th Dewey Thon.  See above.  I won't be able to isolate myself from the household--people or duties--for the entire 24 hours which is going to give it a completely different complexion.

4:44 AM - I'm setting this to go live at 4:44 AM but it may be as much as an hour before I check in.  Making coffee, Getting eyes focused.  Settling in at primary reading station.  But I will be reading via audio by 5AM.

Ode to Dewey
by Joy Renee
We Miss You Dewey


Friday, April 24, 2020

With Respect to the Spectrum (Revisited)

Earlier this month I reworked and updated the post I wrote here the week I received my Autism Spectrum diagnosis nearly 5 years ago for publication at Wellness Works NW.  With their permission I'm cross-posting it here.

At the bottom of this essay is appended a list of some of the books on autism I've encountered since my diagnosis. That list is short compared to the TBR list I've collected on the topic so tomorrow I'm participating in Dewey's 24 Hour Read-a-Thon and intend to devote at least 50% of my reading time to the topic in both fiction and non-fiction.

I was diagnosed with High Functioning Autism in the Fall of 2015 the very week of the annual fundraiser for Autism.  How ironic is that?

I was 57 and 10/12ths.

Essentially I had self-diagnosed a few months previous while reading aloud to my Mom The Best Kind of Different: Our Family's Journey With Asperger's Syndrome by Shonda Schilling wife of Boston Red Socks pitcher Curt Schilling about their experience with their son Grant.  As I was reading I kept finding myself identifying with the behaviors she was describing.  After the first few evening's readings I went back in the ebook and highlighted all the incidents that resonated with my own memories of similar incidents.  There were already over half a dozen and as the days progressed I continued to highlight something nearly every day.

After stewing on it for a week or so upon finishing the book I got up the nerve to ask my counselor if we could look into having me assessed for Asperger's.  It turned out she was already considering the possibility.

A few weeks after that it was official.  Although they don't call it Asperger's anymore as the new manual subsumes that diagnosis under High Functioning Autism. 

Most of my issues are in the social, sensory, emotional, and perseverating behaviors.   Sensory overload results in (or is the result of) an inability to process all the data flooding all five sensory intakes in real time which is likely (in my self-observation-informed opinion) the root of most of the other issues. 

Who wouldn't have social anxiety if every conversation is conducted in a room with multiple blaring TV's and radios on different channels, tuning orchestras and marching bands, and a window open to big-city traffic on a sunny day with its constant flicker of light and shadow and cacophony of horns, engines, sirens, brakes, raised voices...  Now add to that a sixth channel for an equally chaotic swirl of emotion.  And yet another channel for a cascade of sensory and emotional memories triggered by all of that.  Who could be expected, under such conditions, to assign meaning to subtle changes in facial expression, body posture and tone of voice to figure out there is more meaning being proffered than the dictionary definitions of the spoken words.  It was hard enough and often impossible to capture the words and their meanings in real time.  No wonder conversations held in my presence often sound like they are being exchanged between the staff at Charlie Brown's school.

This untamed chaos accompanied by awareness of incomprehensible expectations on the part of others creates the anxiety (performance anxiety on steroids?) which leads to the 'unacceptable' behaviors like social isolation, rituals and rhythmic movements, OCD, inconsistency, getting stuck in a groove, zoning out (Earth to Joy!) giving the appearance of self-involvement or selfishness.  

That is where the name Autism for this condition originated--from the cognate 'auto' meaning self.  But I believe that is a misleading misnomer born of limited information and lack of imagination on the part of the early researchers.  What if it is all evidence of instability of self-hood--an inability to maintain a coherent sense of self in the midst of sensory chaos.  If that is so then all those manifestations of information overload and attempts to self-soothe are evidence of monumental courage and tenacity.  

Modern theories use the term Mindblind which has potential to be less judgmental and pejorative but only if those contemplating it realize that it is a two way street.  To accuse those on the spectrum of 'mindblindness' because they exhibit little evidence of being able to predict the output of other minds by extrapolating from personal experience while exempting themselves from the visa versa is nothing more than hubris and will only lead them down another blind alley.  

The assumption in play is that only the neurotypical mind is a legitimate manifestation of mind.  I reject that as I reject the idea that someone speaking another language is less human than I.  

Originally I felt enormously relieved and full of hope having the diagnosis.  It explained so much--like:

  • Why as a child I had few close friends and got along with adults better than my own age group and as an adult I continue to have a dearth of close friends and gravitate towards children and teens as my confidants.
  • Why at nearly 20 months I spent the entire night following the July 4rth fireworks until past dawn screaming "BOOM! BOOM! Mama. BOOM! BOOM!"
  • Why I'd always avoided crowds and my first and only attempt to attend a high-school pep rally ended with me hiding in the girls restroom in the school library with the lights out in the grip of a full blown feels-like-a-heart-attack panic attack that overcame me just seconds after entering the gym where the band and cheerleaders were warming up and the bleachers were full of nearly 900 students all talking at once.  With a mirrored disco ball shooting light shards.  I had previously spent the pep rallies in the library but they had just made attending them mandatory.  After that I made sure to be in one of the library typing booths with the light out-sometimes hiding under the desk-until I heard Mr. H. locking the front door.  Or I'd be conveniently home sick that day.  (I wasn't faking it as severe anxiety can create symptoms that mimic illness like sore skin, low-grade fever, sore throat, nausea.  It plays havoc with immune systems as well.)
  • Why I tend to get intensely focused on one topic or activity to the exclusion of others like watching all five Star Trek series inside of four months or all ten seasons of Criminal Minds inside of five weeks or crocheting for twenty hours straight or spending most of forty some hours writing a short story or listening to the same album twenty times in a row or until my brother threatened to break it if I didn't give it a nauseum.
  • Why I research every subject that catches my fancy like I'm going to be writing a master's theses on it.  Wanna lay bets on which subject got that treatment in the year following my diagnosis?
  • Why I dislike being touched
  • Why I like handling things with different textures and shapes and feel a compulsion to touch every object in sight.
  • Why I get lost in a zone while staring at something--or nothing.  "Earth to Joy!"  Which may have resulted in the loss of my first close friend in sixth grade after I refused to respond to her calling my name during a rainy-day-recess hide-and-go-seek game in the classroom.  I suspect just like the pep rally I was in sensory overload and had gone into my version of a virtual booth.  
  • Why I resist meeting peoples eyes.
  • Why I'm such an extreme perfectionist I prefer to not do it at all than to do it wrong.  In grade school I'd start the assignment over each time I made a mistake because even the erasure smudges offended my sensibilities.
  • Why I have OCD tendencies
  • Why I'm ritualistic about tasks, liking to do them in a certain way or having difficulty doing them at all if some element of that ritual or the ability to establish a ritual is denied me.  But sometimes the ritual for just setting up to do the task consumes the allotted time for working on the task.
  • Why I have difficulty following oral directions without needing them repeated--several times.
  • Why speaking on the phone is nearly as difficult as attending pep rallies
  • Why I'm clumsy
  • Why I jiggle my leg, tap my fingers or pencil on the desk, swivel my desk chair side to side, tap my tongue on the roof my mouth or teeth (one of the ways I learned to disguise the compulsion into socially acceptable behaviors along with rocking babies, bouncing on the mini-tramp or exercise ball, sitting in swings or rocking chairs, drumsticks...)
  • Why I like to collect things and hate to give them up--even things most would toss in the garbage without a qualm--like the old asbestos bathroom floor tiles I hid under my mattress when they put in new linoleum when I was six.  I was heartbroken when Mom discovered them and took them away.  I'm still saving weird stuff but nothing quite as disgusting as that. :)
  • Why I dislike change.  Even transitioning from indoor to outdoor, from dry to wet, from awake to asleep...and visa versa. Switching tasks, changing clothes, changing routines....
  • Why it took me nearly ten years to earn my bike via the star chart devised by my mom in which completion of each day's chores without reminding and with good attitude earned a gold star and for each gold star Daddy would put a dollar in the bank for our bike.  My baby sister whom I had a seven year head start on earned her bike several years before I did.
  • Why I dislike any social gathering but especially of more than three or four people.  One on one is my preference.  Well...not counting one on none which I suppose doesn't count as a social gathering anyway.   Although--maybe, if I were allowed to count all the characters that inhabit my storyworlds.  :)
  • Why I cover my ears and feel tempted to tantrum when sirens or trains go by within a block.  Or jets approach or leave runways.  Alarm clocks are barely more tolerable.
  • Why I have such massive startle reactions anyone standing too close can get hurt.  More than once someone coming up behind me or touching me unexpectedly got an elbow in the gut or ribs.
  • Why even listening to conversation takes so much effort and wears me out. And participating is a whole other level of enervating angst.
  • Why I think in images and video clips and struggle to translate them into words before whoever is listening loses patience.
  • Why my thoughts go into a free association at light-speed in which I see patterns and relationships I can seldom convince anyone else are relevant
  • Why conversations with me can wear out the other person trying to follow my train of thought all over the map of ideas.  And that's even if we started out discussing the menu for the next meal.

Nearly all of that can be explained by a neurological condition that makes processing and integrating multiple streams of information in real time impossible.  Each of the five senses is at least one separate stream.  Verbal content another--one stream per person speaking.  Non-verbal content another--one stream per person present.  Emotions another, if not separate streams for each emotion present in the environment--mine and theirs.  Spatial relationships yet another. Time yet another.  Self/Other boundaries yet another.  If having a stable sense of self requires integrating all of that and more in real time, what is the meaning of the phrase 'self-involved' in this context?

Some of the relief the diagnosis generated in me when I first received it relates to the pervasive sense of failure as a human being I've carried for decades because of what seemed to be character flaws preventing me from conforming to expectations--mine or other's.  This sense of failure feeds the depression I've struggled with since at least age 4.  A depression that reached suicidal levels several times before age 40.  As I wrote in my blog at the time: 

Forty odd years after earning my bike I'm still expecting gold star days of myself and never achieving them.  But the chart I've created for myself contains dozens more requirements than Mom's did for me back then.  It's probably impossible for a neuro-typical.  But for someone with the issues I just described above its just cruel.

Now I'm getting a glimpse of a future in which I've forgiven myself for the failure to accomplish the impossible.  For isn't it as unrealistic to expect someone with sensory processing issues to be at ease in a crowd or capable of accomplishing each days tasks to perfection without reminding and with good attitude as it would be to expect a blind person to drive a car or a person with only two limbs to jump rope?

The hope that accompanied that relief was rooted in the expectation that the diagnosis would open new doors for me like counseling that was more like coaching targeted at the issues that prevent me from living an autonomous and productive life.  I believed that defining a problem was the first step in fixing it and thus I was on my way to a brighter future.  But not so much.  Turns out the community mental health system where I'm at doesn't provide such services for adults.  And all the information I've accessed in my year's long research project has just added more data streams to the chaos.  

Yes, the information from the dozens of books, articles and videos has helped me understand my situation and develop compassion for my self and even forgiveness but it hasn't yet helped me stop creating new need to forgive myself on a daily, even hourly basis.  It has given me a sense that it should be possible to organize my self and my life to create competency and self-respect but I've yet to find a way to apply the knowledge with a consistency that even begins to mimic normal adulthood.  And now, at age 62 it is getting harder to cling to the hope for a self-actualized life and I'm overwhelmed by the sense that my self will remain as unfinished as the dozens and dozens of novels, essays, stories, and poems in my files and the dozens of unfinished fiber art projects in boxes and bags surrounding me.

But if I've learned nothing else it is that consistency like perfection is overrated and and neither are viable goals in the first place.  Hope is the prerequisite for effort and effort nurtures hope.  The process itself is the goal.  Trying the next thing when the last thing fails is the mark of maturity.  So I will continue the research and the efforts.

Following is a list of some of the books I’ve encountered since the diagnosis that have informed, nurtured or empowered me:
Academics: Science, Theory, History, How-To, Sociology, Psychology, Journalism
  • Asperger’s on the Job by Simone, Rudy
  • Asperger’s and Girls by Wrobel, Mary et al
  • Coming Out Asperger by Murray, Dinah
  • NeuroTribes by Silberman, Steve
  • The Autistic Brain: Thinking Across the Spectrum  by Grandin, Temple
  • Exposure Anxiety – The Invisible Cage by Williams, Donna
  • An Anthropologist on Mars by Sacks, Oliver
  • Mindblindness An Essay on Autism and Theory of Mind by Baron-Cohen, Simon
  • Natural Genius : The Gifts of Asperger’s Syndrome by Rubinyi, Susan
  • Neurodiversity by Armstrong, Thomas
  • The Neurofeedback Solution by Larsen, Stephen
  • The Social Skills Guidebook: Manage Shyness, Improve Your Conversations, and Make Friends, Without Giving Up Who You Are by MacLeod, Chris
  • Working With Adults With Asperger Syndrome: A Practical Toolkit by Hagland, Carol & Webb, Zillah
  • Self-determined Future With Asperger Syndrome : Solution Focused Approaches by Bliss, E. Veronica & Edmonds, Genevieve
  • In a Different Key by Donvan, John & Zucker, Caren
  • The Highly Sensitive Person by Aron, Elaine N.
  • Autism and the God Connection : Redefining the Autistic Experience Through Extraordinary Accounts of Spiritual Giftedness by Stillman, William
  • Writers on the Spectrum by Brown, Julie
  • An Exact Mind: an Artist With Asperger Syndrome by Myers, Peter
Biography and Memoir by those on the spectrum and those who care for them
  • The Best Kind of Different: Our Family’s Journey With Asperger’s Syndrome by Schilling, Shonda & Schiller, M. J.
  • Carly’s Voice by Fleischmann, Arthur
  • Funny, You Don’t Look Autistic: A Comedian’s Guide to Life on the Spectrum by Michael McCreary
  • Nobody Nowhere by Williams, Donna
  • Somebody Somewhere by Williams, Donna
  • Born on a Blue Day by Tammet, Daniel
  • Look Me in the Eye by Robison, John Elder
  • Raising Cubby by Robison, John Elder
  • Be Different by Robison, John Elder
  • The Spark: A Mother’s Story of Nurturing, Genius, and Autism by Barnett, Kristine
  • Temple Grandin by Montgomery, Sy
  • Thinking in Pictures by Grandin, Temple
  • A Thorn in My Pocket: Temple Grandin’s Mother Tells the Family Story by Cutler, Eustacia
  • Raising Blaze by Ginsberg, Debra
  • To Siri With Love: A Mother, Her Autistic Son, and the Kindness of Machines by Newman, Judith
  • Life, Animated by Suskind, Ron
  • Following Ezra by Fields-Meyer, Tom
  • House Rules by Picoult, Jodi
  • The Speed of Dark by Moon, Elizabeth
  • Love Anthony by Genova, Lisa
  • Best Boy by Gottlieb, Eli
  • The Peculiar Miracles of Antoinette Martin by Knipper, Stephanie
  • Shine Shine Shine by Netzer, Lydia
  • How We Deal With Gravity by Scott, Ginger
  • Ginny Moon by Ludwig, Benjamin
  • The Curious Incident Of The Dog In The Night-Time by Haddon, Mark
  • The Art of Fielding by Harbach, Chad
  • 600 Hours of Edward by Lancaster, Craig


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