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I started working on a new blog.  Here’s a first glimpse.  I’ll be adding actual content, soonish, and I’ll continue to blog here as well.

My mom and I have been switching the days we drive down to visit Boo from Saturday to Sunday, based on Andy’s work schedule, which is fine except it sure doesn’t help me remember what day it is.

This past Saturday we’d planned to celebrate Jonah’s 13th birthday.  I bought him a few little things (flash cards and small fidget toys) and my mom got him big helium balloons and a chocolate cupcake-cake with a singing candle.  We left the cupcakes in the car so Boo wouldn’t go straight for them without eating his lunch.

I was tummysick but pushed through (bad choice of words, Amy) and we arrived unscathed.  We opened the door to see Jonah coming in the room on daddy’s shoulders, piggyback, all smiles in his pajamas.  He’d slept at Andy’s the night before.  I don’t know how Andy accomplishes overnights with Jonah, but he does – and I have to give him a whole ton of credit for it.

Pretty early on in our visit Jonah attacked me, snatching and mangling my glasses, yanking a fistful of hair, clawing at my face — with no warning, for no reason.   It’s been a while since he came at me like that.  Andy managed him in the bedroom while I wrangled my pliable glasses and tangled hair back into shape.

I’m remembering it in shards.  Hard to articulate how it felt, what with me being sick on top of it, and Andy so tired, and my mom trying her best to thread us all together – to patch the pieces.

I remember helping Jonah with his bath, playing our kiss eye? & kiss lips? game gently, even though he had attacked me less than an hour ago.  He’d eaten a cupcake on the side of the tub and there were crumbs in the bath.  He allowed me to hang out while he splashed around in the almost-too-hot-but-that’s-the-way-he-loves-it water.

And when he was all done, I remember he wanted a piggy back ride out of the bathroom, wrapped in a towel.  Sorry, kiddo.  Mama’s not Wonder Woman.

I remember Jonah wanted my mother on his car ride, no mama, which was okay with me because then I could lie down.  And when they returned my mom went back out to the car to get Boo’s cupcake-cake and candle, and she brought it in to fix it for him, but Andy was keeping him quiet in his room after more aggressions.

Mom stood ready to light the candle, uncertain.  I watched, sick and disappointed — almost disinterested — from the couch.

All done?  All done?  Jonah cried, craning his neck around daddy to see his treats.

After a few minutes Andy let him leave his room, and my mother lit the candle, but she was the only one with heart enough to sing Happy Birthday to 13-year-old Jonah Russell Krebs.  Andy and I just kind of mumbled it.

But my mother always has heart enough to sing for Jonah.

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“To tell you the truth, I’ve said it before
Tomorrow I start in a new direction
One last time these words from me
I’m never saying them again
and I shut the light
and listen as my watch unwinds…”

~ Guster, Come Downstairs and Say Hello

I started writing this blog with no real intention of using it as anything but a cathartic & necessary process.

Then people found it, and more people found it.  If it’s helped one person out there, this blog has been worth it.  Thank you, all of you who supported and encouraged me through my shitshow of life-pieces.

Jonah’s been well.  He’s got a great sense of humor with wonderful attempts at being sneaky, but he nearly always gives himself away, laughing aloud at his own inventive trick in the midst of its very execution.

Andy is his best buddy and the most amazing father around — more amazing than I can even comprehend or begin to explain.  I always knew he would be, though; even before I married him, I knew he would be, to any child.

My mom and I still see Boo on Saturdays or Sundays (depending on when Andy works) and he’s growing into a bright, happy, handsome boy with a lot of OCD and still some aggressions.  In my heart I know he is in the right place, and there is a humble hope there too that he’ll grow into a young man with some independence and a whole lot of happiness.

I want to find ways to contribute more to that happiness, maybe make him a music mix or two…talk to his teacher and residence head about his preferences.

Funny; they used to ask me.  It feels like it’s my own fault.  I could find more ways to try to insinuate my presence into his little life.  But he hates the visitor’s center (the on-campus place with really nice apartment-like settings for family visits) and there’s no “home base” for us nearby. They don’t allow visits to his own house, except to pick him up and drop him off.  Andy is kind enough to have my mom and I over once a week.  I could bring Jonah up to Albany, to this place – the house where he used to live.  He hasn’t been here since the day we brought him to Anderson.  We’ve made deliberate efforts to bring him no closer than the Stewart’s shop three blocks away.

I’m afraid to bring him here.

If he asked for home? or started to panic, cry/breakdown, it would damn near kill me.  And if he liked it here, I’d need help to watch over him.  I’d love for my boyfriend (who actually cares for individuals like Jonah) to live here and go with me to see Boo, but he lives 850 miles away.

He can’t leave his life there and I can’t leave mine.  And so we continue to visit when we are able — once every 4-6 weeks, which we happen to think is pretty damn good — and our love is strong and joyful despite such nonsense as physical distance.

Time is an *asterisk*, Tim knows (and I am learning).

We visited West Virginia in January & I learned to cross-country ski.

We visited West Virginia in January & I learned to cross-country ski.

Jonah’s going to be 13 on March 7th, and that’s awfully close to adulthood.

Some part of me thought he’d stay my little Boo.

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Because he’s so young inside, there’s something almost wrong about his body growing out of that innocence.  Those sweet, pre-school like curiosities and his uninhibited joys belong to a tiny little boy.  Jonah’s teenager-sized now.  It’s weird.

Valentine's Day Treats

Valentine’s Day Treats

The residents at Anderson stay until they’re 21, and then they enter whatever program and residence suits their abilities and independence level.  Sometimes it’s an adult residence much like his house now – and then the housing moves into more and more independent living situations.  I’m not so much worried about those possibilities as I am staring at them, as at a distant mountain’s terrain I know we’ve all got to climb, with time’s strange ticking toward our journey “up” that incline.

We guess.  Decisions about medications, therapies, music, motivation, behavior modifications.  I say autism’s a casino.  It’s dark inside no clocks no windows.  It’s random, and it’s messy, and you can hit it big – but mostly you keep going to the ATM, withdrawing more and more from your life your choices your options until all of it is gone and you’re walking out the door, blinking into the reality-light.  I say we’re in the infancy of understanding autism:  the diagnosis, treatment, identification of causes…the moral earthquake of words like cure.

Part of why I love Elizabeth Moon’s The Speed of Dark is how she approaches the topic of being ‘cured of autism.’  The bare honesty and objective approach surprised me; I’d assumed she’d be unable to break from a highly subjective viewpoint (her own son has autism).  But I was too quick to judge.  Her book kept me interested and engaged.  To me it’s an edification and an enchantment to see things from an altered angle, and this story was indeed from that kind of place – offering a glimpse into the thoughts and feelings of a man with autism (albeit high functioning) and why he is considering undergoing an experimental treatment to make him “normal.”

Still.

I feel like my time of talking about all of this is coming to an end.  A huge part of my life will always be about being Jonah’s mother.  I’d like, though, to write about other subjects and explore other journeys.  I’ll still update here, but I truly believe the most raw and helpful entries about Boo are from Fall 2010 – August 2011 (if you don’t want to feel alone or would just like to read what we went through).

Once I build my new blog, I’ll post it here.  Then I’ll continue to post here (perhaps once a month) and at the new blog as well.

One personal update: I was recently let go from Modest Needs because of a budget cut, and so I’m job hunting…exploring and considering many options.  The very ground is dancing with the buzz of uncertainty and choice.  I’m doing this, though.

Here’s a “Jonah’s Journey” of sorts, a collection of Jonah media for you to enjoy.  See you soon.

May empathy and understanding reign.

Jonah at the eye doctor.  He's knows the routine and is better behaved there than most adults.

Jonah at the eye doctor, January 2015. He’s knows the routine and is better behaved there than most adults.  His eyes look good!

Mama and her happy boo

Mama and her happy boo

Sporting his sweats and a smile

Sporting his sweats and a smile

Jonah in daddy's "big blue bed," sporting the "You Can Never Have Too Many Trains" t-shit his "aunt KP" for him for Christmas.

Jonah in daddy’s “big blue bed,” sporting the You Can Never Have Too Many Trains t-shit his “aunt KP” bought him for Christmas.

Happy, Handsome Boo

Happy, Handsome Boo

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Holy cold.  The moment I announce my intent to go all winter without light or heat, I’m ready to drag out the space heater; it occurs to me I should ask a plumber just how low I can let my temperature get before I’m in danger of my pipes freezing.  The fact that this is all self-imposed hardly occurs to me.

It’s 50 degrees in my house right now and not even freezing temperatures outside yet.  My thermostat is still at 45 but I’m not sure that’s high enough.  I researched a little on the ‘Net but mostly there’s advice for people leaving their homes for the winter.  The fact that I run hot water to hand wash my dishes and take showers should count for something, right?  (That’s not a rhetorical question.  If you know, please tell me!)

I’m reading Laura Ingalls Wilder’s The Long Winter over and over, reminding myself of what she and her family survived through conditions far worse than my own.  I re-watch Alone in the Wilderness, a documentary about Dick Proenneke living alone for 30+ years in Twin Lakes Alaska, and hear his words echoing in my mind:  “It’s a toasty 40 degrees in the cabin today.”

I think to myself I can do this, I can manage.  I can “come out” of the cold to my car, or a friend’s house, or even the dreaded mall.  But it’s really hard to get out of my toasty bed in the mornings.  Manzo-kitty even has his own comfy blanket and snuggles next to me on the bed.

Yesterday my mom and I drove down to visit Boo.  On the way we listened to her new Barry Manilow “Dream Duets” CD, in which he has inserted himself into various deceased singers’ tunes – everyone from John Denver to Marilyn Monroe.  It’s kind of cool, in a slightly creepy way.  At least it wasn’t Sing Along With Mitch.

Oh, and it turns out they did find a train conductor costume for Boo to wear on Halloween, and he loved it.

Jonah, train conductor extraordinaire

Jonah, train conductor extraordinaire

One more reason to appreciate the folk at the Anderson Center for Autism.

I also found out they think his aggressions have increased in school due to some classroom staff changes; his aggressions at Birch House (where he lives) have stayed steady, which is to say mostly mitigated.

At least there is a reason, an antecedent.  It’s a huge thing for us…to be able to know why Jonah is upset.

At Andy’s apartment Jonah was overwhelmed, I think, by the variety & choices of items to eat.  Both my mother and I brought special items from Halloween with which to spoil Boo.  Usually he enjoys taking items we bring and putting them away – in the cabinet, refrigerator, or wherever else he deems they belong.  This day, though, he began to open up mini potato chip bags and chocolate cookie boxes and the silver-foil wrapped tuna fish sandwich, all before we could interfere and take most of the excess away.

Then he started scrolling through requests for things he didn’t have before him:  pot pie? pepperoni?  strawberry milk?  apple cider?

He was getting “squirrely,” as Andy and I call it, and so when I tried to calm him or help, Andy stopped me.  “Let me handle him,” he said firmly, as he often does.  Tears always spring to my eyes; while I know Andy is trying to protect me from a possible aggression, it is frustrating to have Jonah largely uninterested in me and at the same time be prevented from interacting with him – even if it is for my own safety.

On our car ride to get apple cider, I snapped one picture of him smiling and one of him imitating a strange skill I possess (of touching my tongue to the tip of my nose):

happy boo

happy boo

he's not as skilled as his mama but he tried

He’s not as skilled as his mama, but he tried…

And then a video of Jonah’s requested song:  Live for Love, by Prince…you can see his daddy handing him some lip balm for optimal comfort during Boo’s listening, rocking joy:

He’s got a new method and skill for selecting desired music.  He’ll say to daddy Wan take a picture? which actually means May I please have the case of CDs?

Then he announces the name (actual or self-invented) CD he wants, and selects it from the sleeves within the case.  Once he hands it up to daddy, he announces the number of the track he wishes to hear.  Sometimes it’s one simple request: number seven?  and other times Andy has to start at the CD’s beginning and Jonah will say number one? number two? etc. until he’s found (and will eventually memorize) the track number he really wants.

Although this new skill is impressive, it gets old when he wants one song from each CD, after having zipped up and handed the case back to Andy, requiring Andy to take it out and hand it over again – and eventually, inevitably, Andy simply suggests radio.  Usually this is cool with Jonah but once in a while he’ll confuse us with his rapid-fire requests:  Diamonds and Pearls?  – followed by  No Diamonds and Pearls?

And so once Andy suggests radio Jonah is usually resigned to his pop tunes by whomever-the-hell is cranking them out these days.  I’m a geezer with Top 40 and know barely any of the artists.   My tastes tend toward alternative (ex. The Pixies or The Elizabeth Kill), or classic (ex. The Beatles or Pink Floyd), or classical (ex. Mozart et al).  And of course, Guster, best of them all.

Suddenly I’m in a writing zone again.  Maybe November will be blog-heavy.  Who knows?  It keeps me warm, oddly enough – or at least is a distraction from the cold!

I did not end up going to see Boo today.  I am sneezing and stuffy, and yesterday I took my very first Boniva pill to stave off my osteoporosis.  I think I’m suffering a nasty-ass side effect of it with which I won’t gross you out.  At least I only have to take it once a month!

Hopefully the side effect goes away before the Jethro Tull show tonight my cousin B is treating me to experience.

Time to drink a hot beverage, do some jumping jacks, put in a movie and run in place, hold my hands over a candle, bake some cinnamon rolls (and open that beautiful oven door all the way afterward to release the heat), take a short drive with the heat blasted.  Anything besides sit still and f-f-f-f-freeze.

Hello from the hibernating hippie!

Hello from the hibernating hippie!

 

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In the present world, this technological, psychotic, politicized, nonsensical world, you have to believe that the good guys are going to win.

~ Rufus Wainwright

The meek shall inherit the earth.

~ Matthew 5:5

Jonah is unashamed of who he is, and he harbors no hatred to anyone.

I read an article today about a stranger in North Carolina who paid for dinner at a restaurant for a family with an epileptic son.  The mother’s name is Ashley England and her son, Riley, is 8 years old.

“I’ll try to do this without crying,” the waitress told the family, according to WBTV.com. “But another customer has paid for your bill tonight and wanted me to give you this note.”

England said Riley, who is nonverbal, gets frustrated because he can’t speak, and he had been especially rowdy during the meal.

“He threw the phone and started screaming,” England told WBTV. “The past few weeks have been very hard and trying for us, especially with public outings. Riley was getting loud and hitting the table, and I know it was aggravating to some people.”

Ashley said the mystery diner’s random act of kindness brought her to tears.

“To have someone do that small act towards us shows that some people absolutely understand what we are going through and how hard it is to face the public sometimes,” she said. “They made me cry, blessed me more than they know. I felt like out of all the rude negative comments we are faced with, these outweigh them. The people who care. Little did he know what struggles we had been facing lately, and this was surely needed at that moment.”

I needed to read that.  And she’s so right: out of all the rude negative comments we are faced with, these outweigh them. The people who care.  I’ve been in such pain – nearly constant physical pain, the worst of my life (though it’s going away now)…and perhaps that’s why I reacted so emotionally to the icky troll comment.  Thanks for all of you who rose to my defense or left a comforting comment.  On a better day I’d have approved it, ignored it, and moved on.

I’ve been told by a few to just delete rude/mean comments from trolls or whomever, but I want them to have their say.  Maybe just so they can hear how idiotic they sound, or to remind myself of exactly how good the “good guys” are in comparison.  It’s like the physical pain I went through….which, incidentally, was worst on my birthday.  Pain reminds us how awesome it is to feel no pain.  Cruelty reminds us of how awesome kindness feels.   Balance and all that.

So not to worry, my goodfolk…I am neither crushed nor angered anymore at the comment.   Ignorance is simply lack of knowledge, and judgement is just an easy way to elevate oneself to a false level of confidence or ego.  The minute we start pointing fingers at one another we have lost the truth — that, really, we all could use a good long walk in a million pair of moccasins, each representing a different path, a different perspective.

I found this commentary about the meek inheriting the earth:

“The meek are those who can bear insult; are silent, or return a soft answer; who, in their patience, keep possession of their own souls, when they can scarcely keep possession of anything else.”

I like that.  I sometimes feel I’m the epitome of meek.  I’m not one for ‘soft answers’ but perhaps it’s something to strive for…and I’m not sure if I have learned patience so much as had it thrust upon me until I had to adapt to a patient mindset or go insane….but I’ve certainly got possession of my own soul, even when I can scarcely keep possession of anything else.

Boo has scarcely been on my radar screen through all this sickness, if the truth be told.  I missed my visit last Saturday.  I invite you to call me a bad mother, because frankly, Ms. Ickerson, I don’t give a damn.  I was in such pain all I could do was cry and pray.  Jonah’s father has picked him up for visits all week and through the fog of pain meds, I hear tell of a boy who is acting his usual self — unabashedly joyful, sad, hungry or angry…but always my sweet, precious Boo.

I’m hoping to move from the bed and the couch soon back to the outside, where my morning glory vines, stubbornly massive in their green reach, have finally bloomed into sky-blue streaked white flowers.  I’m hoping to feel better enough to see my boy on Saturday and hug him tight.  And I’m grateful I have told the un-sugarcoated truth for years now and have heard resounding cries of love and support in return.

Thanks so much.

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“There is no way that writers can be tamed and rendered civilized, or even cured. The only solution known to science is to provide the patient with an isolation room, where (s)he can endure the acute stages in private and where food can be poked in with a stick.”

~ Robert A. Heinlein

Boo is much better.  He has had good days since Andy dropped him back at his residence on Monday, and he has made only a few, easily-redirected attempts at touching his eye.  Next Wednesday he will return to the surgeon doc so she can take a look at his progress.  I am extremely grateful today – for this good news of Boo…for my mother, whose calm & clean routine (and psyche) were so severely disrupted for far too long.  For my therapist and his insights…for all the friends and strangers and work clients who have reached out to me with such sincere caring and concerned support.

Today, though, I am particularly grateful for a new path I have chosen – one, in fact, chosen when I was perhaps just 8 or 9 years old: the path of the writer.  It is about as easy a path at which to eke out a living as is any art, which is hard as hell.  Finally, though, at the tender age of 43, I have done it – and in the most spectacularly amazing way, completely befitting my personality and skill-set.  Now I make my living entirely from writing, and from home, on my computer, often in my jammies.  Somehow I work far fewer hours and earn plenty — definitely enough — have amazing benefits and health insurance, and am working for (and with) an incredible group of philanthropists!  It is only my first week and already they have expressed great pleasure at my work.  The president actually told me it was an honor to be working with me.  Me!

I write and I write and I write, with the peaceful company of Jack the dog and Almanzo the cat as comfort and companions.  It is the bliss of one left alone to enter “the zone” a writer must find in order to have uninterrupted quiet to do what writers must do – what writers are compelled to do.  I am blessed enough to have always known who I am and what I should be doing; I am doubly blessed today to be actually doing it; I am thrice blessed to be working for a charity unlike no other – helping the working poor to become self-sufficient.  In fact the charity gives such a high percentage of its money to the people (and not to administrative costs) that it was a 2012 winner of the BBB’s “great non-profits top-rated award.”  There are anonymous donors matching contributions all the time, so there is virtually nothing that does not get to the people for whom these grant programs are designed to help.

I’ve been a faithful donor to this charity for more than 10 years, as it has always made sense to me as a place to give my money — where hard-working people can find one-time help to get past a roadblock which would otherwise send them spiraling into the cycle of poverty.  Now we are launching an exciting new grant program – and I get to be a part of doing all this good, while doing exactly what I love.  I can’t express my gratitude enough and am constantly uttering thank you…thank you…thank you….for this is all I have ever dreamed of and more.

There is the temptation to express disappointment and hurt at the deafening silence from my ex co-workers who have evidently forgotten me & the many kindnesses, acts of support, and affirmation I have shown to them over the years when any of them were faced with family tragedy, personal challenges, illnesses, or just because I felt like committing acts of kindness – for not a single one of them has shown me any support or even acknowledged me with so much as a card – and there were a handful there I really did consider friends.  But the hurt melts away when I realize I do not need to harbor any resentment or anger at all (and in fact it would be a waste of time) – for I am free now, and so very happy.  I can only wish them all the same.  Remember when Amy used to work here?

Thank you, God.

“Anyway” by Mother Teresa

People are often unreasonable, illogical and self centered;
Forgive them anyway.

If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.

If you are successful, you will win some false friends and some true enemies;
Succeed anyway.

If you are honest and frank, people may cheat you;
Be honest and frank anyway.

What you spend years building, someone could destroy overnight;
Build anyway.

If you find serenity and happiness, they may be jealous;
Be happy anyway.

The good you do today, people will often forget tomorrow;
Do good anyway.

Give the world the best you have, and it may never be enough;
Give the world the best you’ve got anyway.

You see, in the final analysis, it is between you and your God;
It was never between you and them anyway.

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I am in an excited state of preparation for my Labor Day week trip to Laura Ingalls Wilder’s home & museum in Mansfield Missouri.  Before that, though, I have to write an article for the Capital District Parent Pages and judge 20 entries or so for NYSARC’s annual media awards contest; they’ve asked me to do this for several years now, and I enjoy it.

But the writing and the judging is time-consuming, and I’d rather create more nature art in the woods or something.  Something simple, like this:

At any rate I am mostly going to blog some quotes, videos, and short tales of Jonah/nature art/fun lists until I get back.  I am fine, and I am taking healthy steps to become downright awesome.  Jonah has been enjoying his 2-week break before school.  He learns well, but he does love to ask no school today? and have his words validated…

That’s right, buddy.  No school today.

And so today’s quote is from my favorite book, A Little Princess by Frances Hodgson Burnett.  Its protagonist, Sara Crewe, is arguably one of the greatest characters in literature.  Someone gifted me the book when I was 10, along with The Secret Garden, and it took me 6 years to finally pick them up and give them a chance.  They looked Victorian.  Boring.

I was never so happy to be so wrong.  I have read them and re-read them probably 40 or 50 times.  I loved her other books as well, but this one tops the list.  It even tops (I’m gritting my teeth here for going out on such a limb) The Long Winter by Laura Ingalls Wilder, which may well be my second favorite book.  Maybe I should try to make a top 10 list.  It’s as mutable as water, though, and could change tomorrow.  In fact I’ll forget all kinds of books in the very consideration of ranking them.  And most of them are children’s or young adult books.

“Perhaps there is a language which is not made of words and everything in the world understands it.”
~Sara Crewe; A Little Princess
But I’ll try anyway:
1.  A Little Princess by Frances Hodgson Burnett
2.  The Long Winter by Laura Ingalls Wilder
3. The Giver by Lois Lowry
4.  Of Mice and Men by John Steinbeck
5. Watership Down by Richard Adams
6. The Catcher in the Rye by J.D. Salinger
7. The Good Earth by Pearl S. Buck
8.  Like Water for Chocolate by Laura Esquivel
9.  The Glass Bead Game: (Magister Ludi) by Herman Hesse
10. Breakfast of Champions by Kurt Vonnegut, Jr.
There’s no way I can stop at ten.  So many books belong in my top ten.  Why did I start this impossible task?
11.  Me Talk Pretty One Day by David Sedaris
12.  The Secret Life of Bees by Sue Monk Kidd
13. 1984 by George Orwell
14.  Brave New World by Aldous Huxley
15. The Heart is a Lonely Hunter by Carson McCullers
I have also been instructed to write ten positive things about myself.  And so, one more list:
1.  I am a giver.
2.  I can make people laugh.
3.  It is easy for me to love.
4.  I am friendly.
5.  I am kind.
6.  I care about my planet and its people.
7. I want to make a difference in the world.
8. I am a good writer.
9. I smile at strangers.
10. I am a nurturing mother.
And hey:
Thank you to everyone who commented, or treated me with an extra bit of kindness, or has reached out to me because they care.  Thank you.

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gasping

“The truly creative mind in any field is no more than this: A human creature born abnormally, inhumanely sensitive. To them… a touch is a blow, a sound is a noise, a misfortune is a tragedy, a joy is an ecstasy, a friend is a lover, a lover is a god, and failure is death.  Add to this cruelly delicate organism the overpowering necessity to create, create, create — so that without the creating of music or poetry or books or buildings or something of meaning, their very breath is cut off.

They must create, must pour out creation. By some strange, unknown, inward urgency they are not really alive unless they are creating.”

~   Pearl S. Buck (1892 – 1973)

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