Our Magic Music Night Seeing Hiss Golden Messenger Almost Didn’t Happen – Twice

The show was announced way back in August. That same day, I bought 2 tickets and sent a calendar invite to Kris to save the date.

The show would fall just a couple of weeks after our 20.5-year anniversary, and she’d really enjoyed their show last year with me at Terminal West. And this one would be even closer, just 20 minutes away at a venue we’d been visiting since high school.

Anticipa…tion

From August through November, life went on. Back to school, colds, travel for work, the full serving of life in progress.

Since I follow HGM on twitter and instagram, I’d see updates about their tour, and I’d be just as excited all over again.

When they announced “our show” had sold out, I congratulated myself on my (1) excellent taste and (2) wise early-bird purchasing habits.

Less than a week prior to the big night, I realized with horror that we hadn’t asked our favorite sitter if she could stay with the boys. Kris was spending a week out of the country, so I deep in the subsistence one-day-at-a-time bunker of single parenting. Totally not conducive to planning ahead, or any of the executive functions (unless falling asleep at 8:45pm counts as one. And if it doesn’t, I don’t want to hear abzzzz zzz zzz.)

But luck was on our side! Our saintly sitter was available. SET PHASERS TO ROCK.

The Big Day Arrives

A couple of hours before our planned exit time, I take care of final preparations:

  • Load my wheelchair, saying a quick prayer of thanks for the clear skies (the joys and sorrows of having an external lift!)
  • Move the car so the sitter will have a place to park
  • Pack my small wallet
  • Fish my winter gloves out of the closet
  • Check venue site for suggested parking spots

Then, I opened my email to print out the tickets.

And my email said, “What tickets?”

Search results - justice@ejjustice

Oh, must have had a typo. Try again, please.

NOPE

Change up my search terms: full artist name? Venue? Date?

NOPE. NOPE. NOPE.

Go straight to ticket seller site to check my purchase history.

NOT EVEN A LITTLE BIT

In desperation, I went to my bank’s site and pulled up the 3 month old statement, looking for the transaction that I KNOW I made.

BITCH, ARE YOU FAMILIAR WITH THE DEFINITION OF INSANITY?

But by that time, I was not familiar with anything. My own kitchen faded out and spun away, like in a bad dream. I was speechless. But…? How…?

Reckoning

With the sitter due at 6pm, I confessed to my wife my revelation that I must be an idiot. Somehow, she did not seem as surprised by this revelation as I.

Go easy on me, honey, I’m not doing too well
Do you hate me honey, as much as I hate myself?

– “Heart Like a Levee,” Hiss Golden Messenger

Like most parents of small children, we don’t get a lot of nights out together, and we didn’t want to cancel on our sitter and have her lose the planned income. A chain of sorrows.

Time to scare up a Plan B. There must be something else happening on the Sunday night before Thanksgiving.

*googling*

In this city of nearly 6 million people.

*googling*

In this, the 9th-largest-in-the-nation metro area.

*googling*

N O T H I N G

And I don’t mean “nothing as good as our original plans.” Our goal for months was to see HGM – nothing could match that.

I mean “nothing” as in “not a single thing.” Every events calendar was cleared until after Thanksgiving.

JFC. What do people even do after 7pm?

Movies! What’s playing?

Oh, that’s right – NOTHING.

Finally, in disgusted resignation, we buy two tickets to Geostorm twenty miles away. With the movie holding at 13% on Rotten Tomatoes, at least I wouldn’t have to pretend to have liked it. This was the best of the bad outcomes.

Seeking company for my misery, I tweeted my disappoints out to the world.

EJ Justice on Twitter_ _TFW you've been

EJ Justice on Twitter_ _@hissgldnmssr Please.png

A minute later, I get a reply notification. Unusual, because even my nearest and dearest treat my tweets like the elevator farts they are: best to politely ignore them, hoping I’ll stop soon or leave.

But when I check, the reply was from MC.

! ! ! ! ! !

The next minute was a blur. DM, reply, an email, and he put us On The List.

A bolt from the blue of pure grace.

We drive to dinner a couple blocks from the show venue, dine, and toast to my undeserved good fortune, to the grace of artists working from love, to a wife who doesn’t hate me as much as I hate myself.

We roll toward the venue at doors open. There would be no opener, and it’s easier to maneuver my chair before the crowds reach max capacity.

Sit-down Setback

We arrive at the venue’s entry, where the opening door is up a half-flight of brick steps.

Hmm.

When the door swings open, we can see 2 more flights of steps leading up to the venue proper, the listening room.

As I mentioned, we’ve been to this venue off and on for the last 20 years – but not in the last few, not since I’ve had my wheelchair.

After the couples in front of us file in, we coolly ask the door man, “Where’s your wheelchair entrance?”

“We don’t have one.”

Wut?

“Sorry, we don’t have one.”

Kris and I exchange dubious glances. Is he new? In possession of a remarkably dry sense of humor? Is it backstage, so they keep its use tightly restricted?

“But…but…how do you get gear and stuff in?” I stammer.

“Carry it.” And he shrugged all of his many muscles, some of which appeared to shrug their muscles.

Well, son of a bitch. We made it this far — through the Forest of Wait and the Bog of Buying Brainfart, to On the List, to the literal Doorstep of the Venue — and there was No Way In.

We move back to regroup. A few walkups get told it’s sold out and leave. A few more ask about the band anyway, which I tell them is great (hence sold out) and can’t help pettily throwing in “and it sucks that they put me on the list, and neither of us knew I wouldn’t be able to actually get in.”

I might have said that last part extra loud so muscley doorman would hear. *angel on my shoulder blushes*

But it worked. *devil on my shoulder grins*

This man of few words said, “Well, we’ll get you in there if you’re on the list. What if we carry your chair up? Can you get up the stairs, then sit again when we get it to the top?”

“My [power] chair weights 130lbs!”

“And I weight 260,” he countered good-naturedly.

“I weight 220, but I can’t lift it.”

I am thoroughly skeptical person, and also this female salmon. But. If they’re offering. And if it’s really the ONLY WAY…

There’s one way in and there’s one way out and we’re gonna have a good time

– “Biloxi,” Hiss Golden Messenger

So I relent.

Kris offered her arm to my death grip, and I clawed the bannister with the other hand. I step, step, rested, step, dragged my weak leg and large ass up too many stairs to count.

Showed my ID to the list holder, got stamped, and staggered in.

Down below, Doorman recruited two other willing guys and brought up my big, bulky wheelchair.

I was too ashamed to look back. I was mortified they had to do that for me, and flooded with appreciation that they would anyway, and terrified they’d hurt themselves or the chair in the process.

It’s a basic-ass power chair, but it took me a $1,000 co-pay and nearly a year of time to get it. A replacement would cost over $6,000 because my insurance company doesn’t shop on Amazon.

Eventually, it arrived, and I sat and tried to breathe slow and not cry. (Not tonight!)

But the lack of elevator was just the tip of the inaccessibility iceberg. There was no designated seating area for chair users, so we were left to strategize our own spot. We picked one at the end of the bar, next to the (low) tables where standing people would be less likely to block my view.

The crowd fills in moments later and fills the place up. I will not be able to go anywhere until it clears out again after the show – unfortunate news to my neurogenic bladder’s every 20-minute schedule, but again, no choice here.

It’s hard, Lord
Lord, it’s hard
Everybody in the whole damn place has gotta have a good time

– “Biloxi,” Hiss Golden Messenger

Lights up

Band in. Show starts.

And in that alchemy, the mess, the strife, the shame of getting there melted away.

We groove like only HGM can groove.

We laugh. We sing along. I chair-dance myself sweaty.

And also countless people trip over the footplate of my chair (and my feet). I have to pee for an hour and a half, leaving me praying the show never ends and ends right now. Bitter and sweet, sweet and bitter.

They play all my favorites.

I’m amazed at the energy the band can bring to this last stop on tour.

I’m humbled at the sacrifices they make to come bring this experience to us. Thousands of miles and dozens of days and countless loved ones left, just to fill us with the gospel of the jukebox.

It’s like an oil change for the soul. The toxic sludge drained out, the life-giving power of connection restored.

Hallelujah anyhow.

Maker:S,Date:2017-9-24,Ver:6,Lens:Kan03,Act:Lar02,E:Y

Requisite low-quality phone snap that completely fails to capture the power and glory of the experience

We applaud the contiguous encore. It’s the mature choice, logistically and conceptually, and it makes perfect sense.

Finally, finally, it’s over. We wait a minute for the aisle to clear as quickly as it had filled, and I beat it to the (inaccessible) bathroom. Relief.

When I come out, they’re waiting to take my chair down. I grapple-plod-step-rest-plod back down, and plop on a bench in the clear, cold air outside to await the chair arrival.

When the eagle lands, Kris and I head back to the car, to home, to bed.

Coda

The story would end there, but it doesn’t quite, because there was magic afoot, remember?

To home, to bed, to sleep perchance to dream. Perchance to not be awakened by either kid before dawn. And so it went!

In the morning, I rolled over to try to shift the pain from one hip to the other, to keep the pain down enough to pretend I might sleep for 15 more minutes.

But that never works. I open my eyes and was transported instantly back to the stage last night.

blue sparkly jacket in my closet

The wholly impractical blue sequin jacket I thrifted last week in a fit of Opry fever

A shimmering blue column of power and persistence catching the sliver of weak sun, transforming it beyond recognition.

A pulse of light in the darkness, just like HGM in the November early darkness on that empty Sunday evening.

I’ll rise, I’ll rise
I’ll rise in the morning
Take the good news
And carry it away
Take the good news
And spirit it away

– “Drum,” Hiss Golden Messenger

And in that flash, I knew: there is enough love to go around.

That songs are stronger when more people sing them.

That live music is the raw edge of community – our synapse, ifyouwill –  of community with every thing that makes life good, and with each other.

And it’s a “we” that makes life good.

There’s one way in and there’s one way out and we’re gonna have a good time

– “Biloxi,” Hiss Golden Messenger

I had a good time. A great time. An epically awesome time.

Even with the roadblocks, the self-imposed and the systematic, amor vincit omnia.

Thank you, MC.

Thank you, HGM.

Thank you, Eddie’s Attic strong men.

Thank you, Kris, for 20.5 years.

Thank you, legs, for getting me up the stairs one last time.

 

 

 

 

 

 

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My nagging Instagram improvements wishlist

I couldn’t find an offical place (in the Instagram app or online) to offer these humble suggestions, so I’m committing them here in an attempt to move on with my life.

BTW, I’m synapsecracklep0p on iG (yes, that “0” is a zero). My feed is 85% baby photos, 10% things I saw while thrifting, and 5% my Tysabri infusions count-up. Tl;dr MUST SEE TV.

Allow limited hyperlinks. Nobody wants Instagram (hereafter referred to as IG) to get all spammed up. We see enough sneaky pitches for body wraps, Romanian porn, and “get 363 new followers” (and I hope you’re reporting them, too).

But there are times when linking would really help broaden the conversations we have on IG. I would like to see the ability to link to images from my IG archive (most restrictive) or to other people’s IG archives (less restrictive).

Of course, they could blow the lid off and make links to any website clickable (unrestricted), but that’s not where I’d want to start.

Alternatively, it seems like IG could offer to make whatever-kind-of-links clickable when they’re from people you follow (most restrictive) or when they’re from people who follow you (less restrictive).

Make our past photos more findable. Every day, it gets harder to find past pics. Don’t make us feel like we’re sharing into a black hole! Surely there’s some way to shortcut back in time — by month? by year? by x00th pic? — when scrolling through our own (or others’) pics.

Make it easier to follow hashtags. This would be so useful for photo challenges or to learn about new topics. You could reinstate RSS for hashtags — I’d be okay with that, because NewsBlur makes it so easy to keep a finger on the pulse. But it would be lovely, too, for the IG app to offer a native way to do this as well.

Make it possible to group the people I follow It would nifty if I could group my follows by the affinities they naturally fall into, such as my twomom families, my MS family, my meatspace friends, my family-family.

Finally, and most importantly, make our pics and info portable. Most of us don’t have any plans to pick up and leave, but we also don’t want to lose all the time, effort, and heart we’ve put into sharing our memories. Offer us an easy way to download our pics with their captions and basic metadata, like when they were posted. Bonus points for even richer data, like number of likes.

Are you an IG user? What improvements are on your wish list?

Cool Find: Toddler Sand Tools



I’m planning for the boys’ easter baskets to simply be some sand/water toys and tools. And a little chocolate, but mostly just a couple of toys.

The weather will be warm enough to finally play outside with the water table. And if the enthusiasm with which they’ve been going after the dog bowl is any indication, they absolutely cannot WAIT to get their hands wet.

What I’ve already found, though, is that most of the readily-available sand toys are too big for a young toddler to easily play with. At the sand space at the park last weekend, Felix picked up a shovel with a head bigger than his own. Frustration followed. No good.

Some alternatives I’d considered:

  • Kitchen utensils. Sure, I have some they could use, such as spoons and measuring cups, but I’d prefer dedicated play stuff so I can keep my dedicated kitchen stuff.
  • Bath toys. While they have some cups and such in the bath, I think they’d prefer that those remain available for every bath time.

Enter these great “Sand Tools” that I spotted (ok, more like boughted, amirite?) at Michael’s today.

They get a demerit for being plastic.

But they get credits for being only about 6 inches long and having really good proportions for little hands just developing fine motor skills.

Give them another credit for being “just” $4. Sure, I had a flash of panic in the store because $4 felt like a lot compared to the thrift prices I prefer. But cooler heads prevailed, and i rationalized that $4 for a 4-pack still clocks in around dollar store territory, making them reasonable enough. It is a holiday, after all, said Scrooge McMom.

Let’s add one more credit for being colored, packaged, and sold in a gender-neutral style, just because so damn few things are, and especially at the cheapest end of the spectrum.

I only bought one set for them to split, but if they work as well as I expect, I’ll be back in a month to find another so everybody can have plenty to choose from.

For others interested in tracking these down, I found them hanging on a lonely strip of impulse buys just before the checkouts, not part of any larger seasonal or thematic display.

As for you: seen any good buys lately? Bonus points for links and/or samples. 🙂

I know this isn’t Tumblr, but I’ma talk about gender for a minute

I just got a cheap new pocket knife in the mail and I am too excited about it.

 

IMG_2461
What a silly question. It’s for all kinds of uses!

To keep in my purse, mostly, and surreptitiously open packages taped shut by mean thrift store employees who seem to want me to buy a pig in a poke.

But it’s good for anything! Just wait. You’ll need a cutting implement soon, and I’ll come to the rescue.

It seems like sometime in the last few years, there has  been an explosion of interest in naming gender(s) and sexualities. But I have yet to see one that seem to fit ME.

Because along with pocket knives and matches and baseball, I also like bugs and tadpoles and treehouses.

What is it be called if I’m a woman-body with the soul of an 8-year-old boy?

Turn up the fun with BALZAC!

I came home after my infusion and cheer-me-up quick thrift session with a Balzac.

“What’s that?” KK asked. Another one of our odd-couple moments — her phd in comparative literature versus my wasted youth held dramatically different notions of what constituted a “Balzac” and what made it so great.

Put on your Hammer pants, tease those bangs, and go back in time with me to

The early 1990s!

The world just looked different then.

Balzac Earth balloon ball

Unwilling to wait a moment longer, I managed to blow it up — without passing out — and tossed it into the playroom.

Now, all I’ve heard for the last 30 minutes is galloping toddler feet and squeaks of joy.

As a kid, I thought a Balzac would be fun. But now, from a mom perspective, I think a Balzac is AMAZING.

For starters, for wearing toddlers out, it’s even better than the playground at the mall, with all its associated contagion.

It’s lighter than a beach ball, washable, and refillable.

It’s safer than a naked latex balloon, which at 15 months, the boys would bite, burst, and probably choke on.

And of course, it’s extra fun because I always wanted one of these and my parents wouldn’t get me one. “You have all kinds of balls already,” my mom would sneer. “Here’s some wrinkly leftover balloons from your sister’s birthday party.”

I never could make her understand that Balzac wasn’t a ball, or a ballon. It was a patented “magic action balloon ball — the newest, wildest, funniest, craziest ball on earth!” See?

Balzac user guide cover

I did a thing! Toddler art gallery

For months and months, I’ve been looking for a way to display artwork at the boys’ eye-level.

Unfortunately, “eye-level” means it would also be within their arms’ reach. Which means anything left unattended would very shortly end up in their mouths and on the floor. Likely in many sharp little pieces.

No deal. The Van Goghs and Rembrandts and Monets would have to wait.

But wait!

Serendipitously, I got lost in Target, one day scanning aisle after aisle for trash cans. (How can you hide a bunch of trash cans? They’re as big as…well.)

In my search, I found this nifty little undermarketed artwork holder that showed promise.

I forgot to take a picture of the package and Target's own website doesn't who it. Found this one on ebay.

I forgot to take a picture of the package. Found this one on ebay.

No glass, no hard plastic even, and it’d be easy to switch out images every so often, without having to take it off the wall. And only $10!

Did I mention “undermarketed”? Check out Target’s own web presence:

Targetscreengrab

Nothing says “celebrating the colorful creativity of childhood” like this paen to bleakest minimalism.

I promptly bought it, brought it home, and lost it for 2 months.

Getting warmer

The recent playroom expansion gave us more wall space and the perfect excuse to find and install the artwork holder.

For the first fill, I found a cat calendar at Goodwill for $1, and a puppy one at Target’s dollar spot for $3ish. Cut some of the cutest down to fit the pockets and hung the whole thing up with some Command poster strips. Et voila!

playroomartFramers

Hoity, meet toity.

 

But what did the critics think?

playroomartFJrx

Felix approved of the way the display validated photography’s long-acknowledged power to mirror both the face of the world and of the most important things in the world: dogs.

 

playroomartEJrs

Emerson noted that the gallery was by turns euphoric and despairing, prey to utopian optimism or deep spiritual disarray, depending on whether you were a dog person or a cat person.

And finally, here’s an overly-long video of them worshiping at the quadruped shrine.

Verdict: I did a thing!

Have you done anything lately? Tell us about it!

Serendipity – Disabled Mom Spotting

Serendipity today via Pinterest — someone brought Steph Dodson’s blog and pregnancy story to my attention. I was riveted, because we have so much in common. I started to comment on her story, but it got so long I decided it belonged here instead.

Dear Steph,

Congratulations! I’m new to your site, but I feel like I already know your story, because it’s so similar to my own.

I was diagnosed with multiple sclerosis in 2007, a few weeks before my 27th birthday, and my disease has been characterized by unremitting pain and many flare-ups. I cut back my work hours and failed therapies and hurt and struggled, and my wife and I assumed kids were out of the question. Who’d take care of whom? The last thing I wanted to do was make life harder for anyone.

In 2011, though, I had a few better months, lost a bunch of weight, and got bit by the baby bug, big time. We tried for almost a year and finally conceived in February 2013. The surprise of our lives was being blessed with TWIN boys!

Though I worried about the potential complications from my MS and from the twin pregnancy, it turned out to be the best months I’ve had since being diagnosed. I had a quick and relatively painless labor; a natural, drug-free delivery; and best of all, two healthy babies.

The boys are now 10 months old. They’re a ton of work and a ton of fun. Even when I’m ready to drop at the end of the night (or let’s be honest, by lunch time), I think about how I almost missed out on All This, due as much to ignorance and fear as to my disease. It shouldn’t be so hard to find information about moms with disabilities!

MS has taken a lot of things from me, and it will continue to take more, but I am so glad we made the stand of making babies. We’re graced by their presence, just as you’ll be graced by your darling daughter, and our life is bigger and richer and ultimately better than I ever imagined possible. I wish all the same for you and your family, and for all women with disabilities everywhere.

With love and respect,
EJ

The boys that almost weren’t: