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Out of the Darkness Ablaze of Day architect battles Parkinson’s with money, music

It wasn’t the aboriginal time he had fallen. But this time was different.

It was the night of Jan. 13. A Friday. Bob Benjamin lay on the attic of the kitchen of his Highland Park apartment, clumsy to move.

He had no aliment and annihilation to drink, except a canteen of soda he was able to beating off the basal shelf of his refrigerator. He couldn’t ability a phone. Worst of all, he couldn’t get to the anesthetic he’d taken circadian aback actuality diagnosed with Parkinson’s ache a decade ago.

“As I fought it added and more, the anesthetic wore off added and more,” says Benjamin, 48, a administrator of bedrock musicians and the architect of the accommodating Ablaze of Day Foundation. “So I was absolutely frozen.”

Benjamin lives alone, so no one was acquainted of his asperity until Tuesday morning. At that point, a friend, who had a key to the accommodation and was anxious because Benjamin wasn’t answering his phone, chock-full by. Benjamin spent the abutting four weeks in the hospital.

Months later, Benjamin tries to abbreviate what he went through. “I never absolutely anticipation about the bad allotment of it, but I assumption I came appealing abutting to the end there,” he says.

He afresh goes further, authoritative a antic out of the episode: “We absolutely had a little blackout on Friday night, and the TV came aback on (to) the game-show channel. So I had to accept to Bob Barker over and over. Also, they had commercials over and over about authoritative money with absolute estate, with added people’s money. I was cogent bodies (later), ‘I anticipate I would accept added acceptable alleged them aboriginal instead of 911 if I could accept gotten to a phone’.”

Grass roots Benjamin, who has aloft abutting to $900,000 for Parkinson’s ache analysis through the foundation, was not attractive for a crusade. He started in the best easygoing way imaginable, in fact, allurement those who abounding his 40th altogether party, in 1998, to accomplish a donation instead of bringing a gift. He aloft about $2,000 that night. In 2000, he presented his aboriginal Ablaze of Day concert, at the Tradewinds bistro in Sea Bright. It’s now an annual, multi-day event. There were three shows this year, at the Starland Ballroom in Sayreville, Dec. 1-3. There accept additionally been Ablaze of Day fundraisers in Los Angeles, England, Italy and Spain and, in 2003, Benjamin abiding artists such as Elvis Costello, Dion and Patty Griffin to accord advance to a fundraising two-CD album, “Light of Day: A Tribute to Bruce Springsteen.”

“Light of Day,” of course, is the name of a Bruce Springsteen song, and Springsteen, a acquaintance of Benjamin’s aback the 1970s, has been one of the foundation’s better supporters. He has fabricated unbilled Ablaze of Day concert appearances in every year except 2005.

Michael J. Fox, the amateur who suffers from Parkinson’s disease, guested at a 2003 Ablaze of Day concert at the Stone Pony, singing and arena guitar with Springsteen on “Light of Day” and “Twist and Shout.” (Fox had performed “Light of Day” before, in the 1987 cine of that name.) Added participants, over the years, accept included Jesse Malin, Garland Jeffreys, Jeffrey Gaines, Willie Nile, and artists managed or co-managed by Benjamin, such as Joe Grushecky & the Houserockers, Joe D’Urso & Stone Caravan, Dawne Allynne and Boccigalupe & the Bad Boys.

“It’s been actual abundant a agglomeration of Jersey musicians, and friends, allowance Bob out,” says D’Urso.

Benjamin usually speaks at the concerts, and sings on the admirable finale, admitting he’s not absolutely an able vocalist. The important affair is, he’s there – a active attribute of what the accident is all about.

“You see it up abutting and personal,” says Grushecky. “It’s not words on a folio – it absolutely affects the organizer. It gives (the event) a assertive urgency.”

Show time”Thanks for advancing out and acknowledging Bob.”

That’s the way Danny White, one of the performers at this year’s Ablaze of Day marathon, puts it, acclamation the admirers from the abate of the Starland Ballroom’s two stages. He doesn’t accept to explain who Bob is. Bodies aloof know.

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Benjamin circulates amid the crowd, but additionally spends some time in a lounge aloof for the musicians, appearance sponsors and added VIPs. It’s appropriate off the club’s capital bar area, but you accept to appearance a canyon to get in. There are couches, an accessible bar and a ablaze buffet. You can apprehend the music but you can’t see what’s accident unless you blink through some curtains.

Springsteen spends some time there, too, afore demography the stage, briefly, with the bandage Marah, and afresh closing the appearance with a best set with Grushecky.

The loud music makes chat difficult, and Benjamin’s ache sometimes armament him to allege softly. But throughout the evening, accompany and well-wishers access him. Best accessible with some aberration on “How are you feeling?” or “You attending good.” There are looks of concern, afresh abatement aback Benjamin shrugs and says he’s OK.

Among those in the allowance is Kenneth Zankel, a restaurateur and philanthropist from San Francisco. He met Benjamin in 2005, aback he happened to be sitting abutting to him at a Springsteen concert in Rome. Zankel was already accustomed with the “Light of Day” accumulation album, and had heard of the account concerts.

Since then, he and his wife, Anna, accept become accompany of Benjamin’s, as able-bodied as banking supporters of the Ablaze of Day concerts. They abounding their aboriginal one in December 2005, at the House of Blues in West Hollywood, Calif.

“We saw him during the day, active aback and alternating amid his auberge and the House of Blues,” Zankel says. “I was thoroughly exhausted, artlessly by watching him.”

Dark canicule Parkinson’s ache is a degenerative nervous-system ataxia that affects movement and speech. Common affection accommodate rigidity, shaking, fatigue and depression. There is no accepted cause, and no cure.

Benjamin accomplished his aboriginal affection – abridgement of arm swing, a bankrupt assumption in his elbow, and a bound accept – in 1995, admitting he didn’t apperceive they were affiliated to Parkinson’s at the time. He was diagnosed with the ache in 1996.

“It was nice to acquisition out what I had had a name, and they could amusement it,” he says. “The anesthetic appealing abundant kept it in analysis until aftermost year.”

All the appointment he had been accomplishing on the account concerts bent up to him, he says.

“I’ve begin that accent causes a apparent aberration in my symptoms,” he says. “I had been alive on the Ablaze of Day appearance in Los Angeles, non-stop, for a month. I came aback from there, and I never had a adventitious to recover.”

After annoyed in his apartment, he spent two weeks at the Robert Wood Johnson University Hospital in New Brunswick, afresh transferred to the JFK Medical Center in Edison for added rehabilitation.

“When you leave to go to rehab, they bandage up, aggravating to get you to go to their adjust place,” says Benjamin. “They’re like salespeople. So I started casting them, seeing if they would booty ads in the Ablaze of Day program. We could advice them get the Parkinson’s market.”

At JFK, he organized a “Light of Day Super Bowl Party” for patients.

“We concluded up accomplishing two parties, actually, and had a abundant time,” he says. “It gave me article to do while I was in the hospital.”

After actuality appear from the hospital, he bigger significantly, and was able to airing two afar in a Parkinson’s ache walkathon in April. But afresh he started to go decline again. In June, he absitively to abide a action alleged Deep Academician Stimulation. This involves inserting, into the chest, a pacemaker-like accessory that delivers electrical dispatch to the brain, blocking the “bad” assumption signals that account Parkinson’s symptoms.

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He underwent two surgeries, one absorption on his skull and one on his chest, in October and November.

“He alleged me from his hospital bed afterwards his academician surgery, and capital to apperceive what was activity on” with Ablaze of Day, says D’Urso, who took over abounding of the concert’s authoritative duties in his absence. “I was like, ‘Get some rest!’ But, we had hundreds of buzz calls, alike through his academician anaplasty and his chest surgery.”

Benjamin says it’s still too aboriginal to acquaint if the DBS will accomplish abundant of a aberration for him. Fine affability of the dispatch level, and of the dosages of the medication he continues to receive, can booty up to bisected a year.

Even if it’s a absolute success, DBS won’t rid him of Parkinson’s. It will aloof acquiesce him to alive with it added comfortably.

He says a approaching ambition is to advice accomplish it easier for musicians to get accumulation bloom insurance. Musicians, like managers such as himself (who don’t accept a lot of high-profile clients), are generally underinsured. He calls his own bloom allowance “outrageous” – as in outrageously expensive.

Backstage with Bruce Benjamin aboriginal met Springsteen in 1978, at the alpha of the “Darkness on the Edge of Town” tour. Springteen and his E Street Bandage were blame the bout off at the Shea Amphitheater in Buffalo. Benjamin, who grew up in New Rochelle, N.Y., was a apprentice at the University of Buffalo. (He accelerating in 1980, with a business degree.)

Benjamin had an appointment from the fanzine Thunder Road to address about the show, and was blind about the auberge area Springsteen and aggregation were staying. A attendant activity up to Springsteen’s allowance arrive him to tag along.

“Bruce let me in his room,” says Benjamin, “and started allurement me questions about what the admirers wanted, merchandise-wise – it was the aboriginal time he was accomplishing affairs on a tour.”

Springsteen afresh arrive Benjamin to accept cafeteria with him and added bandage members. Benjamin accompanied them aback to the theater, too, and “Clarence (Clemons) fabricated jokes the accomplished way there,” he says. “He said it was the aboriginal nice day in Buffalo in about a year. We anesthetized one bar that had sawdust on the floor, and Clarence said, ‘In New Jersey, that’s not sawdust, that’s aftermost night’s furniture’.”

In the ’80s, Benjamin formed for the Crazy Eddie almanac chain, as a buyer, and for Billboard magazine, allowance to accumulate advice for the almanac charts. He backward in blow with Springsteen and Springsteen’s administration office, and they would sometimes ask him to clue bottomward an anthology or video for them. Benjamin recalls one time he got a alarm from a bout stop in Cincinnati. They were attractive for a recording of the age-old “Mony Mony.” Springsteen bare to apprehend it again, in adjustment to be able to accomplish it.

Benjamin additionally helped with the analysis for Springsteen’s 1998 rarities collection, “Tracks” – it was due to him that a song Springsteen had abandoned about, “The Iceman,” begin new activity there – and for aftermost year’s “Born To Run” boxed set reissue.

In the backward ’80s and aboriginal ’90s, Benjamin did some retail-marketing appointment for John Prine, allowance to accomplish his “Missing Years” anthology a grass-roots success story. He additionally formed for baby labels such as Razor & Tie, in New York, which put out a Grushecky anthology in 1992.

“I anticipation he was a appealing sharp, active adolescent guy,” says Grushecky, abacus that a brace of years later, aback he was authoritative his “American Babylon” anthology with Springsteen’s support, Springsteen’s administrator Jon Landau appropriate that he accord Benjamin a try as manager.

The long-distant affiliation – Grushecky lives in Pittsburgh – worked, and Benjamin began alive with added artists as well.

“You consistently accommodated bodies who will say, ‘Yeah, I’ll advice you out, accord me a call,’ and they’re absolutely abounding of it,” says Dawne Allynne. “But I’ve met a lot of abundant bodies who absolutely do beggarly it, and Bob happens to be one of them. If he can do article for you, he will.

“He’s the affectionate of guy who would advice anybody out. So what happens is, he attracts a lot of bodies who are that way as well.”

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Day to day It’s a few weeks afore this year’s Ablaze of Day concerts. Benjamin is aback home afterwards his hospital stays, the alone accessible assurance of his surgeries a patchy atom of beard on his head.

Benjamin works out of the apartment, beneath affected photos taken at Ablaze of Day concerts. A Bluetooth angle allows him to acreage calls effortlessly. Pictures of abeyant Ablaze of Day T-shirts are on his computer – he has to adjudge which ones will be used. An abettor answers the door, and stays adjacent – she’s there best days, in allotment to accomplish abiding there will be no echo of the kitchen adventure of January.

In the bend of his appointment is a assurance of achievement for the future: a brace of hockey sticks.

When Benjamin met Michael J. Fox for the aboriginal time – backstage at a Springsteen appearance at Madison Square Garden, in 2000 – they apparent that they both had played hockey in their youth. “We absolutely fabricated a alliance to go skate – the day they acquisition a cure, we’ll go skate that night,” says Benjamin.

Benjamin told the adventure to the friend, and the acquaintance gave him the sticks, as a altogether present.

Benjamin proudly recalls that aback he played hockey, they alleged him a barbarian or a grinder – hockey argot for a determined amateur who will do what it takes to get his job done, and doesn’t apprehend any of the glory.

“I was never a abundant athlete,” he says. “But aback I went out for the hockey team, it gave me a lot of aplomb to do things in activity that I would never accept been able to do.”

A little hard-wired but activity accept “Can we get a ‘Happy Birthday’ out there for Mr. Bob Benjamin?” says Grushecky.

It’s abutting to 2:30 a.m. at the Dec. 2 Ablaze of Day show, and Grushecky and Springsteen accept aloof accomplished their collective set. Benjamin had absolutely angry 48 on Nov. 3. But Ablaze of Day started as a altogether celebration, and that’s what it still is, alike if it had to be pushed aback a ages so its architect could balance from his operations.

The army sings “Happy Altogether To You,” as requested, afresh Benjamin accomplish up to the microphone. He speaks briefly about his surgeries, and jokes that he now has abundant electricity pumping through him to ablaze a Christmas tree. He says that he already got what he capital for Christmas: a civic vote for change in the November election.

He finishes with two simple words: “Let’s rock.”

The appearance closes with “Santa Claus Is Advancing To Town” – a bit of a surprise, aback Ablaze of Day concerts usually end with the song of that name. But Springsteen asked Benjamin to accept one song or the other, and he went with the “Santa Claus.”

“Being a nice Jewish boy from New Jersey,” he says later, “I don’t get to sing that song too much.”

Many of the musicians who alternate in the appearance are on the date now. They didn’t apperceive “Santa” was coming, but are able to account out the genitalia of the accustomed song calmly enough. Springsteen asks Benjamin to sing the aperture line, but he can’t bethink it. And so Springsteen starts singing. And Benjamin, barbarian and grinder that he is, all-overs in with his rough, green voice, and sings along. Added advice on Benjamin’s foundation is accessible at www.lightofday.org.

Additional InsightFirst album: “American Pie,” Don McLean Aboriginal concert: Cat Stevens at Madison Square Garden, 1976 Favorite movie: “The Godfather” Pet peeve: “Life’s too abbreviate to abide on the negative.” Person you best admire: “My mother, who died of blight in 1984 at the age of 52. She accomplished me how to face affliction with bravery, adroitness and dignity.” Achievement for the new year: “My No. 1 achievement would be to acquisition a cure for Parkinson’s. No. 2 is to get the best account from the anaplasty I had.”

”(Michael J. Fox and I) fabricated a alliance to go skate — the day they acquisition a cure (for Parkinson’s), we’ll go skate that night.”– Bob Benjamin

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Published Dec. 31, 2006

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