Holt Uncensored

Holt Uncensored


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by Pat Holt

Wednesday, July 17, 2002


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Ralph Hager looks like an older, horizontal version of Captain Kirk going boldly where few disabled men have gone before.

From his bed, he faces a makeshift console of used terminals, keyboards, lamps, electrical cords and desks stacked every which way in what used to be his living room. Two baseball games play on different televisions looming over him, each with the sound barely audible.

An almost-new electric wheelchair sits unused in the corner like the culprit it is: Wrinkles in its seat cover have given its occupant one of the worst bedsores he's had in the eight years B.R.A. (Before Ralph's Accident). To recover, Ralph must stay in bed for most of a week.

He's in the midst of showing me how he sends email from the computer keyboard hanging over his bed, when the front doorbell rings.

"DOORBELL!" Ralph yells with surprising gusto to his wife, Suzy, who's in the kitchen with guests preparing dinner.

"SCREEEAACH!" squawks Lolita, the couple's giant macaw, who's hanging upside down on the outside of her cage, her pupils dilating wildly. Lolita is also in the kitchen, so everybody out there talks louder.

"SPLICKETYSPLICKETYSPLICKETY" comes the sound of Whiskers, the couple's miniature schnauzer, whose nails clatter across the hardwood floor as he races by to see who's at the door, banging into furniture along the way.

"GAME IS OVER?" calls Harka, one of Ralph's caretakers, as he runs down the stairs to see if Ralph wants to turn the televisions off. Harka, who's from Nepal, has draped his dark bedroom with American flags and spends a lot of his free time there.

You'd think all this commotion would result in someone answering the door, but this is, so far, just a hint of the chaos that has reigned in the household since Ralph broke his neck in 1994. It's also the basis for Susan Parker's biting humor and not-so-quiet desperation in her memoir, "Tumbling After" (Crown; 288 pages; $24).

"Where is Suzy now?" I ask. "Oh," says Ralph breezily, "she could be in the kitchen or the garage, the storeroom, the van, the pharmacy, upstairs, at Kaiser (their HMO), calling the doctor ... " Ralph grins at his partial list of what Suzy has been doing every day to keep their lives afloat for the past eight years.

I have to smile, too, remembering the passage in the book that tells us how Suzy, before Ralph's accident, was given the "Whirling Dervish Award" at her job with an adventure travel company. Her boss called Suzy a "real spark plug"; a friend named her "The Most Determined Woman in the World." While she admits to being a human "Energizer Bunny," Suzy also did her work, she recalls, "with a slightly manic expression."

But it was Ralph's love for Suzy's "uphillness" that most characterized their 12 years together (B.R.A.) as weekend and vacation adventurers who trekked, skied, bicycled, ran and climbed over just about everything in front of them, all over the world.

In those days, Suzy writes, Ralph loved the "downhillness" of things - the wild speed he allowed himself after expending the enormous effort of getting to the top of places. Suzy, on the other hand, "never enjoyed going downhill. It was too scary," she writes. Compared to Ralph, Suzy was the one who preferred to "just keep chugging" upward toward the goal. "I was often the first up a hill or crag, but always the last down."

But like the soldier who survives combat only to get hit by a bus at home, Ralph, escaped one danger after another while bicycling an average of 7000 miles a year - until, that is, he hit "a tiny sliver of glass, a sharp pebble, or an upturned thorn" while zooming downhill near his home in Oakland, California. Flipping over the handlebars and flying through the air, he landed on his head.

The news that Ralph woke up as a C4 quadriplegic hit Suzy so hard that despite indications she was "falling apart" at every turn," she became "The Most Determined Woman in the World" for real.

It was Suzy who learned how to lift him, clean him, feed him, floss his teeth, perform his "bowel program," turn him over, change his bed, find (and pay for) a fully equipped wheelchair and van, turn the pages of his magazines and books (or buy gadgets to do so), identify urinary tract infections, check for hyperdisflexia, high blood pressure and impending seizures, make the house and yard wheelchair-accessible and find a job that paid enough to keep them eating and paying for two caretakers whose fees aren't covered by the couple's HMO.

"Perhaps it's the uphillness in me that is keeping me with him now," she writes in the introduction. "The Energizer Bunny, the Whirling Dervish, the little spark plug. It's all uphill from here. No more downhills to carve through gracefully or sail down safely; only up, up, up."

This mania to "keep on chugging" might have been the end of them both if it hadn't been for Mrs. Gerstine Scott, the first of many eccentrics to befriend Ralph and Suzy. Wearing a sequined pink beret and gold rings on each of her large fingers, Mrs. Scott at 300 pounds presented herself at the back door one day to say, "Baby, where is that husband of yours? I've heard he's been in an accident. Girl, I am so sorry. Let me see him now."

Demanding vats of petroleum jelly and cases of green alcohol to rub on Ralph's skin, Mrs. Scott recognized what Suzy calls "my Baby Jane potential" (nice on the outside; seething with resentment and cruelty on the inside). She also dispensed advice with life-saving clarity ("You need to slow down, sweetheart, before you pop a brain cell").

At a benefit to raise money for attendant care, Mrs. Scott and her friends cooked massive amounts of fried chicken, ribs, potato salad, cornbread, cookies, pies and bread pudding. They grew frenzied in the making of items to be auctioned off, including quilts, pillowcases, afghans and "weird little fabric squares whose purpose was unclear," as Suzy describes them. Total amount raised in one day: $30,000, but the best part is Mrs. Scott singing in her great booming voice at the end of the day, leaving an entire gymnasium of people awed into silence.

In Ralph and Suzy's former living room now, I think of Mrs. Scott's most outlandish advice to Suzy: "It ain't right, baby, you being young and all, with that disabled husband of yours in the house. A young woman like you needs some dick." That kind of blunt pragmatism - so important to Suzy despite her flabbergasted reaction ("MRS. SCOTT!") - invites us to see to the core of L.A.R.A. (Life After Ralph's Accident).

And L.A.R.A. is now a matter of achieving one tiny yet overwhelming task after another. Ralph, intent on showing me his computer, takes a mouth-stick between his teeth and expertly moves the tracking ball on the keyboard in the tray hanging in front of him. The cursor dances over to the top of the empty screen. Ralph pulls the mouth-stick away from the track ball and places it on a key. He pushes the stick with his teeth. The letter "A" appears. "See? Nothing to it," he says.

As president of the innovative Center for Independent Living in Berkeley (CIL), Ralph receives so much email that an able-bodied person would need a whole week to answer it. Ralph will take the entire evening to respond to two email messages.

It's worth the effort, he says. CIL's radical roots go back to 1973, when its leaders chopped cement blocks out of street corners in the dead of night to create the first wheelchair curb-cuts in the country. This kind of attitude is perfect for a go-getter like Ralph.

"But here's my problem," he says. "On Monday next week, I have a meeting with Friends of CIL; on Tuesday Suzy and I see the doctor about this bedsore; on Wednesday I have a committee meeting; on Thursday the board meets. It's going to be a tough week. I hope I don't screw the sore up too bad."

The front door rings again.

"DOORBELL!" Ralph yells.

"SCREEEECH," echoes Lolita.


"GAME IS OVER?" Harka asks, then turns back upstairs.

I feel like I'm in the middle of a children's alphabet book - a noisy one - but Ralph chuckles. "You ain't seen half of it," he says.

So true: Down the stairs clatters Jerry, the other disability attendant who takes care of Ralph. While Harka acts and looks like an innocent and grateful new arrival to the United States, Jerry is an ex-con who's been a bit vague when Suzy has asked him why he spent time in prison ("I don't know, girl, pimpin' and panderin', statutory rape, somethin' like that").

Suzy discovered early on that insurance doesn't cover professional healthcare workers who live around the clock with quadriplegics like Ralph, yet the law forbids unlicensed attendants from doing the kind of work involving "tubes into orifices" several times a day.

So the disabled community, of which Suzy and Ralph are now members, often goes underground: Finding attendants who know their jobs, won't steal you blind, won't take/sell/steal your drugs, won't play dictator or make you wait an eternity before changing your fluid bags or putting you to bed are all difficult to the point of being impossible for half the disabled people seeking help.

In the book, chapters on Harka, Jerry, Mrs. Scott and the screeching macaw are enlightening and funny. But Ralph and Suzy must get used to the fact that their former friends (who used to climb, trek and cycle with them) gradually disappear. Colleagues from former jobs, ditto; family relatives, ditto; money that used to flow into the household from two salaries, gone; other adventures, plans for children, excursions beyond Berkeley, gone.

A nuclear physicist before the accident, Ralph decided to face his condition stoically and with a scientist's objectivity. True, during the first months after the accident, Suzy writes, he tried to convince her to murder him humanely. But that was a long time ago.

"Life's life," he says, looking up at me from his pillow with large, kind eyes. "I've always been a realist, even before the accident. Maybe other people would have stayed in a funk, and I admit it, there were hard times for a year. I'd wake up at night and my legs would be killing me - and for no reason! But you learn to accept things as they are."

The doorbell rings again, followed by the usual shouts and calls and screeches.

Ralph, I say: Don't you WANT to see who's at the front door? Should I just go over there and open it? "No," says Ralph. "Somebody'll do it. Suzy can't hear the bell over Lolita, you see. Harka and Jerry are on a break, I guess. The fact is, we all miss Mrs. Scott" (who died after the book went to press).

A welcoming shout comes from the kitchen. The couple who have been ringing the doorbell so patiently finally gave up and found their way around to the back entrance. During the rest of the evening, no one ever opens the front door. Neighbors and friends continue to arrive through the kitchen. Ralph's bed is hauled into the dining room and Suzy sits down looking tired and triumphant. A great dinner party is about to commence, and here it is only 10 o'clock at night.



Dear Holt Uncensored:

Thank you so much for your extensive and very fond recollections of Noel Young and John Martin. Outside of the Bay Area, but for a piece on Black Sparrow by Andrei Codrescu on "All Things Considered" most of the literary world missed these stories, or at least the human element of them.

I started my bookselling career in Santa Barbara in 1978 and had the honor of meeting both Noel and John very early on. Two years later, Noel gave me my first job in the publishing business, and I say today that I learned more from him than from any other job I have held in the business since. And I know from the many calls and e-mails I received following his death that he affected many other people in the same way.

I was fortunate to remain affiliated with Capra and Black Sparrow until their ends, and I do feel their passings close another chapter on the history of independent publishing in this country. Yet as you point out in your column regularly, there is still a spirit out there - one that owes a lot to both John Martin and Noel Young.

Stephen Williamson
Independent Publishers' Representative

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