The way we are

The way we areThe day has come: we’re now in a power wheelchair. It arrived yesterday and we’ve been trying to get the hang of driving it with its joystick control.

So far, I’ve hit every wall in the house at least twice, and I crashed into a 16×20-inch picture frame, shattering the glass. I realized, belatedly that I was driving as if seated in a car, and leaving too much room on the right for the non-existent passenger side. Doing a little better this AM.

Lying on the floor yesterday, I realized that increasingly I am trapped in body hardware that is steadily breaking down. The CPU and software are still good, but that’s about it. I can walk a little, but it’s more difficult than even last week’s efforts. To be honest, this not fun.

Friend Dennis Nicholson came over for our Friday morning coffee confab, complete with fresh scones from Peet’s. Dennis is just back from hiking Zion Narrows with two friends. Looks like it was a great trip, wet feet notwithstanding. Dennis says the Canyon is only 12 feet wide in places and the water ranges from a few inches to waist deep. Once upon a time, I’d have jumped at the opportunity to make this trip.

Dennis also filled me in on Nathan Myhrvold’s latest project, a 6-volume “Modernist” cookbook that explains at some length the science behind each recipe. Starting to have some inkling of what Stephen Hawking‘s life must be like…

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After the fall

Earlier this year, I was still walking, unaided, sometimes unaccompanied and could usually go 1.5 miles and sometimes further (the year before it had been 4 miles solo). When I began falling a lot, I started using a walking stick, which helped me walk the 2 mile daily sojourn from Ameugny to Taizé and back this past spring.

Alas, this past summer saw us falling again, fortunately, mostly in the house, even with the stick, a sturdy device meant for hikers. Angel Heidi then appeared with the hemi walker, which has gotten me around, including to photo assignments for InMenlo these past two months or so.

But, as the inevitable decline continues, we’ve become pretty wobbly even with the hemi walker. Monday morning we fell while making our way the few steps from bed to bathroom. I managed to hit a doorframe and a heavy stool before arriving at the floor, but otherwise survived in one piece.

Unfortunately, Linda was out jogging (and I foolishly disregarded my promise to stay in bed until her return) so I was temporarily on my own. I quickly realized that there was no way I was going to get up on my own (a feat I’d managed in the past by crawling to some large upright object, and using my strong right arm and leg to haul myself up). For one thing, I can’t crawl anymore, so weak has the left side become, and while I did crab my way to the side of our very sturdy bed. I couldn’t get the body into a useful geometry from which to launch the strong “Heidi Muscles.” after 20 or 30 minutes of struggling, I got onto my back, pulled the bed cover down over my unadorned corpus, and tried to snooze. The hard floor actually felt good under my perennially sore back.

Linda returned and immediately started the drill that has worked to peel me off the floor in the past. she got me up on my right knee, a prerequisite to extending the left leg and using it to hold the body while I moved the right under my torso, preparatory to lifting while grasping the sturdy bedpost.The left leg, it turns out, is no longer stable enough for the chore. It can push down with useful force, but I’m no longer capable of holding it upright and steady.The leg kept collapsing to the side.

Time for Plan B said Linda, and she hurried over to fetch neighbor Dr. Kurt Hafer, who just happens to have been trained as an ER physician. Kurt had me off the floor in about a minute using some magical lifting technique (he put his arms around my chest from behind and lifted straight up).

So it’s time for the next phase – a power wheelchair in my case (one-armed people have a problem with a conventional wheelchair, unfortunately). An occupational therapist is coming for a consult this morning, a Medicare requirement….

Posted in My Brain, New Life, The countdown | 4 Comments

Writing something

A number of readers have have been encouraging me to “write something,” if only to reassure them that I’m still here. Short answer is yup, we’re still answering the phone, as it were, at least when we can get to it, mobility being what it is.

As mentioned we’re still good from the neck up, thought the left side continues its slide. I’m in a wheelchair more often, now, if only because it makes Linda feel better, and still very grateful for the hemi-walker that Heidi found for me. Either way, the wheelchair ramp is a very welcome help.

The biggest difficulty I face now is the approximately 5-inch tall curb that surrounds my shower. A 3-year old can step over it effortlessly, but my increasingly paralyzed left leg can do so only with great difficulty – a situation which isn’t getting better. Linda has to help me get out of the shower all of the time now… we’re waiting for an assistive grab pole that may be a help. Just making our way…

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Insufficiently shadowy

A group calling itself the “Shadow Posse Trolls” has served me a takedown notice, revoking my status as a Shadowy Figure and demanding the return of my Shadow Guild card.The Trolls cite a number of grounds, notably that I’m “Insufficiently Shadowy,”a technical term, I think.

To cite chapter and verse:
- subject is insufficiently obscure, being found easily on Google, and even Bing (you have to be at least 10 pages down to qualify).
- subject has been observed walking in broad daylight, making no attempt to slink.
- photos exist showing subject enjoying life. Even having a life is a contravention of the Troll Charter.
- subject is still out of uniform, days after his dubious “promotion” to status ShadFig.
- subject found a source for Acronym clothing, but balked at the price. Real ShadFigs see 900 Euros (plus shipping) as the price of admission, worth every petrodollar or laundered ruble.

I say better to shadow and fail, than never to have shadowed at all…

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"Shadowy figure" – a coveted promotion comes through

"Shadowy figure" - a coveted promotion  comes throughSo, we know a lot of people will find this highly suspect, given the potential for nepotism, but last night I was granted an honor I have long and secretly coveted: I was described as a “shadowy figure” (honest, I had nothing to do with it, right, dear?).

But we’re not going to wait for the dust to settle before we step up and embrace the new title. Like a newly-promoted WalMart manager eyeing the selection of clip-on ties, my first move will be wardrobe.

So we’re scanning the usual source for “shadowy figure” outfits. Black T-shirts, check. Black jeans (probably Dockers in my middle-aged case), check. Black socks, check. We already have black jockey shorts (don’t ask), check. Black sneakers, check (but we’ll probably go with Van’s slip-ons rather than some skank lace-ups with black shoelaces – we’re a newb after all, and don’t want to seem presumptuous).

This leaves us lacking just one vital accessory – the jacket. Since black leather has gone the way of the plaid tuxedo as a “shadowy” accessory we took advantage of last night’s William Gibson book reading to get some tips.

"Shadowy figure" - a coveted promotion  comes throughUsing imaging equipment and software favored by spook agencies and private detectives the world over, we enlarged the logo on his matte black cotton jacket. ACRNM – turns out to be an acronym for Acronym – whoaaa.

Acronym, spelled out, turns out to be an ur-cool collection of Berlin-based video and other artists with a penchant for noir oeuvres, which video clips have titles like “S-J7.” Curiously, these artistes also offer clothing with similar model names, but you can’t just pop down to Target to pick up one of these beauties. They’re even hard to find on the net. Sounding like a plot line in a recent William Gibson novel? I want one…

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Big night out

Big night outBig night outSo we were off to Menlo Center tonight for two events, one was to hear author William Gibson read from Zero History at Kepler’s Books, and then next door to Café Borrone for dinner and the music of Clint Baker’s Borrone All Stars (we’re hoping some of the All Stars will play our memorial service).

Gibson and I had a brief email exchange after the author sent me a copy of his new book two weeks ago. The Kepler’s crew were kind enough to make room for my wheelchair near the front of the well-attended event, and someone mentioned that Gibson was pleased that I could be there. We chatted briefly, before the author went to work, signing, among other things, a new-looking iPad. A Really decent guy, is Mr. Gibson…

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Secretly famous

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No sooner had we finished Zero History, and started re-reading Pattern Recognition, which tomes explore themes like secret brands and obscure, unheralded, mysterious, but nevertheless, wildly popular media clips, when the most obscure of my search agents turned up crinkly polaroids showing one of my photos, a picture of Vogue model Beverly Johnson, screened onto a t-shirt.

The image is screened in black ink on glossy black cloth – ur-cool, I guess, if barely visible – through a glass, darkly I would have said. Of course, I immediately looked in the recycling bin to see if I’d missed the check from the concern in question, a brand known as “Something Important.” Finding none, I did a little web research before unleashing gulker.com’s fearsome legal machinery on the soon-to-be-hapless infringers.

Strangely, “Something Important” is, as a brand, more like “Something no one’s ever heard of,” if you trust Google (Bing is no better).

Woo hoo! Obviously we’ve just hit the pinnacle – hijacked by a secret brand that people are actually desperate for (they just don’t know it yet). We’ll never be in Walmart (so declassé, non?) – people won’t have a clue where to buy these things. Yes!

When you’re an artiste like moi, and the checks aren’t exactly rolling in, you’re well disposed to the anti-marketing thing. Really. A secret midnight drop of these shirts is planned real soon, now… send your checks, money orders and envelopes stuffed with cash for your map to the secret location… somewhere in New Mexico…

Posted in All, Context, New Life, Photos | 6 Comments