Grace eludes you

I leave the restaurant after the sun has set. Rome is dark. I’m tired and need the shortest route to my hotel so I cut down a dim alley. The road turns rough. I trip along the way. I keep my head down, eyes squinting at my path, and so I don’t see the men first but hear them. They’re laughing. I move to one side of the alley and they move to the same side. I step the other way and so do they. There are four of them. I hear one speaking to me, but I don’t know what he is saying.

Their interest in me, their sound, turns me stony. I open my mouth and out comes not words, but strained guttural notes.

One man jogs past to stand behind me. Another puts his hand on my shoulder and backs me up, toward the wall, toward his friend. His friend is tall. They want to take my picture standing next to him. I’m short, a dwarf, which is funny, hysterical. I’m not real. Just a strange thing in the alley. The flash of their camera. I freeze. Then I’m back in the dark.

When I was a teenager, a man once watched me going up some stairs and he said, “Grace eludes you.” I seemed to be struggling, which struck him, I suppose, as ugly.

Does this man remember what he said to me? Does he return to the memory each time he sees stairs?

I still — two decades after this man watched me walk up the stairs — step aside to tie my shoe to allow people to go ahead of me. I fake phone calls so that others will walk up without me. I pretend to wait for someone who isn’t coming. I bide my time, clinging to my weak ruse of self protection, until no one is looking. I do not climb stairs until I can do so unobserved. I’ve never stopped preparing for the next person who will see me walk and deny me grace.

The way words stay, the way sentences stay, the way memories invade my present, the way a stranger looks at me and speaks: shards that become a mirror.

In Rome, men block my path. They are drunk. The tall one wants to leave, done with this picture project. Another man drops his phone. His friends laugh at his clumsiness. One taps the other’s chest and just like that they’re distracted by a new plan, a diverting interest, and they leave me without further incident and carry on with their night, never to think of this moment again.

Chloé Cooper Jones, Easy Beauty: A Memoir (Avid Reader Press / Simon & Schuster, April 5, 2022)

“I am in a bar in Brooklyn, listening to two men, my friends, discuss whether my life is worth living.”

So begins Chloé Cooper Jones’s bold, revealing account of moving through the world in a body that looks different than most. Jones learned early on to factor “pain calculations” into every plan, every situation. Born with a rare congenital condition called sacral agenesis which affects both her stature and gait, her pain is physical. But there is also the pain of being judged and pitied for her appearance, of being dismissed as “less than.” The way she has been seen—or not seen—has informed her lens on the world her entire life. She resisted this reality by excelling academically and retreating to “the neutral room in her mind” until it passed. But after unexpectedly becoming a mother (in violation of unspoken social taboos about the disabled body), something in her shifts, and Jones sets off on a journey across the globe, reclaiming the spaces she’d been denied, and denied herself.

I Live a Life Like Yours

I started Jan Grue’s new memoir listening to his story on Audible. It’s titled “I Live a Life Like Yours.”

Oh, no Jan. You so do not.

I’m walking listening to his story. Free to take a step, not giving a moment’s consideration to how I keep my balance. And then following this step with another and another and another.

Suffering from Sciatica DK? Put out a bit? YOU are suffering?

Grue was diagnosed as a child with a rare form of spinal atrophy. As Michael J. Fox explains in his book review, “all of the wins in his life are come-from-behind —  a person who is much more than what others see. He discovers that “to be stared at, gawked at, is …to be situated in a narrative that has already been written, and that is told by others.” “The world,” he says, “perceives a body with frail arms, legs locked into certain angles…in a large bulky wheelchair” as not…a whole man…He offers messages of wisdom that will resonate long after you’ve finished the memoir. “At some point or another I stopped thinking about myself as someone who needed repairing.

Dwight Garner is his book review describes “A Life Like Yours” a quietly brilliant book that warms slowly in the hands. And that it does. I, highly recommend the book.

Let me close with a passage from his memoir.


Since an early age, I had known that I had spinal muscular atrophy… I would like to think myself away from my body, away from my injured, worn ankles. But there is no me that exists apart from this body, in some unmarked form. That body would have lived an entirely different sort of life. And yet it haunts me. It casts another kind of shadow. I shut my eyes and go skiing each winter, I run 10K each morning. I dash off to another country at a moment’s notice, grab my carry-on, run out the door and hail a taxi, make my way quickly through the security check and sprint to the gate. I haven’t made arrangements for where I’ll stay when I arrive, I climb into a taxi and simply say: Drive me somewhere I haven’t been before.

I open my eyes.

— Jan Grue, I Live a Life Like Yours: A Memoir. B. L. Crook (Translator). (FSG Originals, August 17, 2021)

Because who is perfect? (Moved.)


Thank you Susan

The Present


Stick with this to the end…

Walking Cross-Town. On A Golden Autumn Day.

Steamy-Grates-walking-winter

I’m on the 5:40 am train to Grand Central.
I dose through most of the ride in.
The throngs spill out into Manhattan.

It’s 15° F, but feels like 0°.
Frigid wind gusts rush through the concrete canyons, whistling as they pass by.
Salt is gnawing on snow and ice.
Steam from underground tunnels billows out of steel grates and evaporates into air.
Now you see it, now you don’t.

The streets are beginning to stir.
Cabs. Delivery trucks. Construction workers.

I’m marching cross-town on 48th.
Headphones in. Playlist set to “My Top Rated.”

Gloves on.
Ear lobes are tingling, frost-bite workin’.
No hat. Can’t mess what hair I have left.

The wind shocks the corneas, my eyes water.
I see him a block away. A mirage.
I wipe my left eye.

It’s the legs I notice first.
They are suspended.
Swinging wildly, jointless.

I’m closing in.
Forearm crutches. Not one. Both arms.
He leaning in.
Right. Left. Right. Left. Right. Left.

I’m 30 feet away.
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SMWI*: Soar


Stick with this short film until the end. If you are having a difficult time getting motivated this morning, think of Dave Jacka.

“I was this 20 year old guy…it was like any other day…one night I went out on my motor bike and I took a corner too fast and too late…head first into the tree…next thing I knew I was lying beside the bike, and I couldn’t move and I couldn’t breathe, and I felt as if i was suffocating…I was 6’ 3” and bulletproof and I could do anything physically…It suddenly dawned on me I couldn’t do anything…I have 6% of my physical body working. I can’t move anything from my armpits down…and suddenly my mom, dad and my sisters have to put me to bed at night. If I had one wish, I just wished I could get myself out of this chair…and have a fraction of independence…”

Be sure to watch the rest of the story.


*SMWI = Saturday Morning Work-out Inspiration

Evolution. In Reverse.

disney-world

“…If you have ever been to a Disney theme park, and have seen a family with a disabled child escorted to the front of a long line to a ride, has your reaction been:

  1. To offer a silent prayer of thanks for your own family’s good fortune to be healthy and able-bodied;
  2. To think good thoughts about Disney for having the compassion to take care of the park’s disabled guests this way; or:
  3. To regard this as a great opportunity for you to pull a con, an easy way to turn the situation to your own family’s advantage?

Apparently answer No. 3 is more common than you might hope, because this week the Walt Disney Co. announced a significant change to procedures at Walt Disney theme parks. No longer will families with disabled children or parents be allowed to go to the front of long lines. One of the reasons for the change, a Disney spokeswoman said, was to curtail “abuse of this system” by healthy families pretending that some of its members are ill or disabled. In May, the New York Post reported that wealthy parents were hiring disabled “tour guides” to blend in with their families and enable them to go to the front of lines. As coldly cynical as this sounded, as snickeringly selfish, there was more: Websites serving families with disabled children featured message boards with infuriating tales of healthy people renting wheelchairs to avoid waiting in Disney theme-park lines…”

If you haven’t hurled yet and want to read more, find full article @ wsj.com: It’s a Small-Minded World, Disney Learns


Image Credit

Get Closer


Source: VideoHall

Sunday Morning: A Winged Victory

Love this…hypnotized by it…but not sure that I fully grasped the story line.  Van Gogh and his illnesses have been on my mind from posts earlier in the week. (9/21-a and 9/21-b).  All interpretations welcome.

Good Sunday morning.


A Winged Victory For The Sullen – Requiem For The Static King Part One (Official Video) from Erased Tapes on Vimeo.


Related Posts:

Sunday Morning: Everything is Incredible

Agustin is from Siguatepeque, Honduras.  He was born “lame with his right leg shorter than his left.”  He was later struck with polio leaving him severely disabled from the legs down.  He dreamed of being a pilot but because of his disability, he couldn’t fly.  He turned his energy to building his own helicopter largely from parts found at the trash dumps.  He started building in 1958.  He is still pursuing his dream today more than one-half a century later with his helicopter still under construction.

His Minister:  “I don’t know what he’s paying for his helicopter in the ultimate sense.  I think he’s paid a lot for that helicopter.  I think he’s paid an awful lot.  You might say what has he gotten out of it?  I don’t know.  Maybe its kept him alive. Maybe its been able to conquer loneliness.  Maybe its been able to conquer poverty.”

Agustin later in the story explains: “The problem is that everything is incredible and people just don’t accept it.”

This video is beautiful. Sad.  Touching.  And inspiring.

And, yes, Agustin, we are blessed. And everything is incredible.  And often times we take it for granted.

Good Sunday morning.


Everything is Incredible from Tyler Bastian on Vimeo.


Related Posts:

Running…with red eyes.

3:30am.  And up.  (Nothing wide-eyed and bushy tailed here.  You have a problem pal.)

Posted my work-inspiration video.  (Was inspired.  For about 3 minutes.  A** firmly planted in chair.  Motivation rating: 1.5 on scale of 10.  Darkness rolls in.  I’m sorry.  That’s disingenuous.  My a** is hanging so low, you can’t see where my a** starts and the floor begins.)

Slash through 50 emails. (Tension climbing with the disposition of each mail.  Look down at meter count.  126 left.  Standing in ocean.  Neck deep.  Taking in water with each wave.  Gagging on the salt water.)

She left the office yesterday after lunch.  A colleague.  Her water broke.  Six weeks early.  No word.  (Damn it, CALL!)

I shut down the email train.  (Rationalizing again.  Maybe I’ll run later.  Nothing in the tank this morning.)

Little red light blinking on Blackberry. (Devil’s tool that little red light.  Blinking.  Blinking incessantly.  It’s not even a pretty red color. Maybe it’s T.  No.  No, it’s not.)

It’s an email from a former colleague.  He’s now in London with his family.  (I haven’t spoken to Steve in a very long time.  What an amazing person and talent he is.  Had no idea he was even following my blog.  Dark clouds fall away.  Mood shifts.  Amazing what a few kind words will do to my psyche.)

“Dave, I hope this note finds you well…Now, I read an article in one of our leading newspapers and felt inspired, when I feel inspired I think of your blog. It’s not the most obvious article that may be worthy of landing on your blog but I thought I would share it just in case you thought your friends would relate to it. As a Dad, it struck a chord with me. Hope you are doing well, and the family is good…..take care……Steve.”

I start panning down the article.  I finish the article.  I’m rubbing tears from my eyes.  I put on my running gear and head out the door.

“It’s not the most obvious article that may be worthy of landing of your blog.”  (Right!)

The story consumed me the entire run. (“You will wish for terrible things; you will pray for your newborn baby to die — not just once, but a thousand times. Go with it, don’t judge yourself, and the storm will pass.”).

If you read nothing else today, take a moment to read the story below.

Running Time this morning? 39 seconds ahead of last Sunday’s pace.  A new personal best.  Steve, I owe to it you for bringing the light back.  Thank you.

Enjoy your Saturday.  That is, after reading the story below.


[Read more…]

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