Tuesday, March 27, 2007

Make Love Not War. . .
. . . was the mantra that blasted the country during the late sixties, early seventies when our sons were babies. The Viet Nam war and the draft drove nearly everyone wild. Banning guns in the playroom was as close as we got to being protesters. Nearly forty years later, we’re in the same place. This time it’s the Iraqi conflict, a more benign word. Perhaps it’s the lack of a draft that’s lured us into complacency. Or maybe it’s that we’ve grown older, more tired and less inclined to act out, although my generation is still outraged. I wrote this story ten years ago, when prosperity ruled and war seemed out of fashion. But after all this time, I'm no closer to having clarity about. . .

. . . Guns in the Playroom

“Where’s Jermy?” Four year old Matt asks as we enter the spacious living room of our friends' high rise apartment. Joshua and Ben, my younger sons, nap at home with a baby sitter this rainy afternoon.

“Oh, he’ll be here soon.” Jeremy’s mother points to the door of the closet and rolls her eyes. “Want some coffee?” she calls back as she walks towards the kitchen.

“With cream.” I angle my chair so I can watch the boys and converse at the same time.

Matt stares at the closet door. A flesh colored patch covers his right eye. Square framed, chocolate colored glasses perch on the edge of his nose. Matt tilts his head back, pushes his glasses to his forehead to peek under the bandage. “Jermy, are you in there? It’s me, Matt out here.” He peers through the keyhole in the door.

The eye patch dangles useless, except for one gummy spot stuck to his eyebrow. I could smooth the bandage to his skin or take a fresh one from my purse. Or remind Matt he must keep the good eye patched, a phrase I’ve repeated a thousand times. Or scold him for ruining a fresh bandage. Instead, I sip my coffee as the closet door opens.

Jeremy’s Mom and I chat about the blue they’ve chosen for the dining room walls, how they love the lake view from the window, how glad they are to have moved to the Midwest. Jeremy emerges from the closet and faces Matt, hands on hips, feet apart. Two straps of silver bullets form an X across his chest. A double gun holster with pistols rides each hip. Red-brown brillo hair curls around the edges of his black studded cowboy hat. At five, Jeremy is a head taller and a year older than Matt. He glares at his friend and wrinkles his forehead while one striped knee sock slips to his ankle.

Matt stares at the guns. No one moves. As I wonder if this was a good plan, both boys bolt down the hall to Jeremy’s room and slam the door.

“You know, we don’t let Matt play with guns at home.” How, in the midst of the Viet Nam war, can she be so casual about guns in the playroom?

“Really? Jeremy couldn’t get through the day without them. Sometimes a bath is tricky. I literally have to pry them off his body at night,” she laughs.

When Jeremy brings his guns to our house, will I stand up for what I believe in or let the opportunity pass? The boys race into the kitchen for cookies, faces flushed, and race out again. I ask how she likes the new kindergarten teacher.

Two hours later, we’re driving home. I’m irritated with myself for not speaking out, for letting friendship get in the way, for taking the easy way out.

“Did you have fun with Jeremy?” My attempt to straighten out the tangled afternoon has the stamina of a cooked noodle.


“You know Jeremy can’t play with his guns in our house because we don’t allow guns in the playroom.” I pull the wrinkled grimy patch from the earpiece on Matt's glasses. “They are too dangerous.” Finally. I’ve asserted myself with a four year old.

Matt snarls as if I’ve told him it’s time for bed, then glances out the window. That night he nibbles a piece of matzoa into the shape of a gun and twirls it on his finger.

Years later, Matt joined ROTC his first week in college, excited to learn the intricacies of military weaponry. Joshua served as a Major in the Marine Corps. Jeremy became a Rabbi.

Thursday, March 22, 2007

Every once in a while, an event occurs that’s meant to be savored. Not a monumental occasion like a wedding or a birth. Rather it’s a quiet moment that often escapes notice.

After the last screening of “Indestructible”, we had dinner together, then watched as Matt, Josh, Ben, Sarah and Rebeccah moved down the street together. They had no great plans for the evening. Maybe they'd catch another film or have a beer. I watched them turn the corner before Steve and I piled the grandchildren into our car and drove back to the hotel.

Years earlier, when explosions over clothes, friends, car windows, leftovers, toys or bedroom territory, to name just a few topics, were a daily occurrence, I wondered what would become of their relationships. Would they care about each other? Want to spend time with each other? Call each other on the phone? I know fifty year old siblings who haven’t spoken in twenty years, curse each other to their parents, refuse to be in the same room together. How does that happen? And what prevents it?

The sibling relationship is probably the least explored and most valuable experience family life has to offer. Brothers and sisters can learn from each other how to argue, resolve issues and move on. They can discover they can be very angry with someone and still love that person. They can learn to stand up for themselves, even if they are the youngest or the smallest. All they need is a little structure.

When our children were young, the warring parties were sent to the playroom sofa to work out their problem. They couldn’t leave the room until they’d reached agreement. I developed a few one liners to use in a multitude of situations. “Talk to her.” “I’ve no idea.” “Not my problem.” Sometimes, they’d both become exasperated with me and commiserate with each other. Other times, I wondered if they were merely placating me so they could get off the sofa. And once in a while, they negotiated a truce.

I wanted my children to know that, no matter what, they could depend upon each other for the rest of their lives. I think I got my wish.

The current newsflash over the IPlex Medication is that we’re following any and all avenues, hopeful that Insmed and Tercica will become motivated by the media, influential members of congress and the judicial system to release the drug immediately.

Tuesday, March 13, 2007

Ben and Rebeccah received a standing ovation Sunday evening from an audience of nearly a thousand people when the announcement was made that INDESTRUCTIBLE had won. Truly a most delectable event in all of our lives. (For more about the Awards Ceremony, see previous post.)



BACKGROUND: ALS (Lou Gehrig’s Disease), an always fatal neurological disease, has been untreatable for 150 years and claims the lives of more than 6000 persons each year in the US alone. It is equally prevalent in most other countries. Through networking, several dozen ALS patients have recently started using Iplex off-label. Iplex is a growth hormone developed and FDA-approved for children with severe growth stature syndrome associated with IGF-1 (primary growth hormone) deficiency. Recently published test studies also show IGF-1 deficiency among persons with ALS.

IPLEX: Developed by Insmed Incorporated, Richmond, VA. Delivers positive benefits for ALS, HIV-AIDS, Myotonic muscular dystrophy, fractured hip, severe short stature syndrome and burn victims.

INCRELEX: Developed by Tercica, Inc, Brisbane, CA. Provides inferior or non-existent benefits for the conditions listed above.

THE PROBLEM: Insmed lost a law suit to Tercica in Dec, 2006 for patent infringement and, in a recent settlement to avoid further litigation, has withdrawn IPlex from the market. Tercica claims its product Increlex, is exactly the same as IPlex. Not so. Tercica has already acknowledged they forced the removal of IPlex from the market to give their (inferior) Increlex a better sales opportunity. Both Insmed and Tercica press releases are contradictory (to one another) and therefore untruthful and in violation of SEC regulations. Each company states they are willing and/or able to distribute Iplex to ALS and other markets, but both companies refuse to do so (citing the settlement agreement).

THE FACTS: Increlex is NOT the same as IPlex in the following ways: IPlex is IGF-1 with a binding protein IGF-3 that helps deliver the needed IGF-1 to muscles most damaged, achieves results more rapidly, allows for higher dosages without adverse side effects, and requires only one injection daily. Increlex is a new name of an old product, Myotrophin (developed by Genentech and licensed to Tercica), that contains only IGF-1 and has been tested repeatedly over the last 10 years with no positive results. It is “free” IGF-1, does not attach to muscles most in need, does not deliver rapid results, allows only for limited dosages without adverse side effects, and requires 2 injections daily.

THE EVIDENCE: Clinical test studies demonstrated the superiority of IPlex over the less effective Increlex for severe short stature syndrome and Myotonic muscular dystrophy (per recently completed University of Rochester test study). Physicians have been regularly converting their severe growth stature syndrome patients from Increlex to Iplex (until it was withdrawn under the agreement forced on Insmed by Tercica). Empirical data and anecdotal evidence not yet published both in Italy and US clearly suggests that IPlex will benefit the following conditions: ALS, HIV-AIDS, severe burn, fractured hip. Benefits shown for ALS patients (even under low dosage, short-term usage of IPlex) include increased limb strength, respiration capacity, chewing, swallowing, musculature, functional strength.

THE SOLUTION: Tercica and/or Insmed should provide IPlex to those who desperately need the medication immediately, even though the cost was up to $9500 per month for adults before IPlex was withdrawn. Patients already on IPlex were told to destroy what they had left or return it to the company.

Begin immediately an open-label clinical test trial of IPlex for those with ALS and HIV-AIDS on a “compassionate use” basis. Supply IPlex free of charge for those who participate.

Examine those patients who have used Iplex for ALS to confirm initial results if necessary.

INSMED Contact:
Administrative office
Phone: 804-565-3000, Fax: 804-565-3500
Ronald Gunn, Chief Operating Officer
Dr Kenneth Attie, Medical Affairs
Dr Geoffrey Allan, President, CEO

TERCICA Contact:
Administrative Office 866-837-2422
Dr. George Bright, Pediatric Endocrinologist
Dr. Sandra Blethen, Pediatric Endocrinologist
Thorsten von Stein, Senior VP, CMO
Fredik Wiklund, Investor Relations/Media
John Scarlett, President, CEO

For Additional Information or to Offer Ideas and Suggestions Contact:

Stephen Byer
Patient Advocate for Rare and Orphan Diseases


Take a moment to bask in the light of Indestructible’s achievement. California Theater in San Jose, where the awards ceremony was held, is a beautifully renovated building. Gilded chandeliers, gold filigree, exquisite murals. Just sitting in the audience was a pleasure. All of the filmmakers were asked to come on stage for the awards announcements. Rebeccah rolled Ben onto the stage from behind the curtain, just ten feet from where we sat in the first row. The audience was filled to capacity, over a thousand. The announcement for the best documentary began with 'powerful, compelling, inspiring’ and when the words ‘Lou Gherig’s Disease’ was said followed by ‘Indestructible’ everyone in the place rose up and cheered. For a long time. Ben said something into the microphone, repeated it, but Rebeccah was unable to decipher his words. “We didn’t rehearse." Laughter. "My brother thanks you.” (We’ll never know Ben’s exact words because he’s decided to keep that a mystery.) Who needs words when the moment is ecstatic? Again, massive applause. That evening at our celebratory dinner, Ben said that when the announcement ‘Lou Gherig’s Disease’ was made, he thought there was another film about ALS that he’d missed. But the title ‘Indestructible’ confirmed the achievement belonged to Ben. His peers, talented filmmakers all, validated what we already knew to be true. Ben’s gift and legacy of ‘Indestructible’ has a permanent place in the world.

Saturday, March 10, 2007


Review: Indestructible at Cinequest

SFist tends to stick pretty close to SF but this week’s Cinequest Film Festival in San Jose has been calling to us and we made it all way to the SoBay to check out the world premier of Indestructible. Indestructible is the autobiographical documentary of Ben Byer beginning when he is diagnosed with Lou Gehrig’s (ALS) disease at the age of 31. ALS is a neurodegenerative disease that is often viewed as a death sentence because those afflicted with it usually die within a few years of being diagnosed. Unlike Alzheimer’s, ALS sufferers retain full mental facility even as their muscular system wastes away and they become unable to walk, feed themselves or speak.

The narrative of Indestructible is focused on Byer’s search for hope via treatments all over the world and on his interactions with his young son. After undergoing a risky and experimental surgery in China, Byer returns to the US to be with his son John. John steals the show with his hammy love of the camera and the way in that he accepts his father’s illness as part of life. In one scene, which is both painful and heartwarming at the same time a five year old John feeds his father spaghetti. Byer and his family attended the premier of the film. After it showed there was a brief Q & A session during which it became apparent that many in the audience were related to sufferers of ALS. They expressed thanks for the hope they felt this film offered them and their loved ones. Byer himself has outlived the expectations of doctors that were presented when he was diagnosed, though his speech has continued to deteriorate and he is now in a wheel chair.

Despite the depressing nature of ALS, Indestructible is an upbeat film. The theme of the film is framed during an interview with the famed neurologist Oliver Sacks (think Awakenings) when he quotes Freud as saying, “Love and work are the cornerstones of our humanity”. In focusing the film so closely on his work as a filmmaker and on his love for his family (Byer’s siblings and parents also feature prominently in the film) Byer demonstrates the humanity and humor that can be retained even in the face of debilitating disease.

Indestructible shows again as part of the Cinequest Film Festival. Saturday, March 10th, 3:45 pm at the Camera 12 theater at 201 2nd Street in San Jose
Posted by Emily in Movies , Reviews, sfist.com

Wednesday, March 7, 2007

Wednesday, March 7, 2007
On the short flight from Madison to Chicago, I sat next to a businessman on his way to New York. He looked to be about my age, maybe a little younger. We chatted about being the sandwich generation, that children today seem to take longer to grow up, even after they leave home. That our parents need more guidance and support from us than we can remember receiving from them. Just as we exited our seats, he said, “The most important thing is the kids are healthy. That’s all that matters.” A few years ago, I would have agreed.

What about having a murderer in the family? Or a gangster? A mercenary? A drug dealer? A kid could weigh 700 pounds, unable to leave his home. Or a homeless person, living on the streets, eating other people’s leftovers from a garbage can. Or the president of a country that started a war.

At the baggage claim in San Jose, a healthy looking young man and I chatted about our respective trips. Turns out he’s in San Jose for a few months to go to a rehab center, pressured by his family to turn his life around. Whereas I’m here to help promote my son’s documentary film.

I handed out a few hundred postcards, flyers and buttons yesterday, plastered posters on the sides of our vans, encouraged people to come to the screening of ‘Indestructible’. I’ve lost count of those who’ve said they’ll be there, looking forward to it, can’t wait to see it. The first screening is tomorrow afternoon. By then the entire family will have assembled to cheer Ben's triumph. Could anything be more important?

Tuesday, March 6, 2007

Tuesday, March 6, 2007
Posting? Posting? What could I have been thinking? I’m after all the mother/grandmother/babysitter and flyer distributor. Steve and I have been on the airplane, at the airport, the hotel and that’s about it. It’s Tuesday afternoon around 3:15. As soon as Henry, our 6 month old grandson wakes up, and as soon as Steve wakes up, we are going to downtown San Jose. Housekeeping has knocked on our door 3 times. If we don’t leave soon we’ll have only soggy towels for tonight. This morning I taped huge posters to the sides of each of our minivans to promote the film as we drive by slowly on the main streets of town. Rebeccah, Ben, Kevin, Tim, and Dave are going to see a film while Steve, Henry, our six month old grandson, and I walk the streets promoting Indestructible. We plan to pass out Indestructible buttons, postcards and flyers to anyone who has the good fortune to pass by. We’ve heard that Indestructible has been promoted on TV, recommended as a not to miss film in the local paper and that the marketing efforts have been a hit. There’s two interviews with Ben scheduled on the days of the screenings. And we’re hoping for filled to capacity showings. It’s warm and sunny – perfect California weather. Tune in tomorrow. I’m pretty sure I’ll have been released by then.

Thursday, March 1, 2007

A New Twist

“I like it. But don’t you want to write about other things?” Ben’s reaction startled me. Of course I planned to write about subjects other than ALS. I was certain the center stage this fatal, incurable, horrific disease dominated since it barged into our family nearly five years ago had shifted aside. But the construct of my blog contradicted that belief.

For the first weeks and months after Ben’s diagnosis, anyone I met on the street, at a party, or in the grocery store offered an opportunity for me to dump and ruin their day. The words just tumbled out of my mouth, as if spreading the news might diminish my distress. No one crossed the street when they saw me approach, but I’m sure more than a few people wished they had taken a different route.

My husband Steve glued himself to the computer and the phone in search of a cure, a tonic, a reversal. After a while, we developed the vacant look that comes from feeling overwhelmed. Netflix films arrived and were returned unseen. We stopped inviting friends over. The tractor remained neglected in the barn. I quit a job I enjoyed. We gained weight and cancelled vacations.

Was it alright for me to have a good day, to laugh, to play with our grandchildren, to write vignettes about growing up alongside children? I knew the answer was yes, but for a long time those pleasures felt like abdication. I stopped writing a novel I was deeply committed to, began another, tinkered with a few stories, accomplished nothing. My heart was elsewhere.

“What would we be talking about if Ben didn’t have ALS?” Sarah, his younger sister, asked one afternoon over a rare lunch together. The question proved provocative. Babies, a story, a trip, work, play. If those aspects of life wriggled their way into our conversation, it was long after we’d digested the current nuance of Ben’s condition.

When the children were growing up and someone was late getting home from school or disappeared from the backyard, I’d think of all the terrible things that could have happened, believing in some misguided way that if I did that, the bad thing couldn’t possibly happen. Since none of the horrors I conjured up ever occurred, the system worked. If I’d just thought about the terror an ALS diagnosis would bring, Ben wouldn’t have become ill. Madness creeps in like that. Crazy people think they’re sane.

When we traveled to St. Louis after a long hiatus, Matt, our eldest son, defined our absence. “Welcome back,” was all he said but the words spoke volumes. We’d been distracted, unavailable and sadly missed.

It’s been nearly five years and I still need a reminder to pay attention to my entire life. I’ve got three sons, two daughters, sons- and daughters-in-law, eight grandchildren, a husband and friends I love and care about. I’ve got yoga to take and trips to plan. I’ve got stories to write and novels to revamp. When ALS does splash onto the page, I've promised myself it will be one among the myriad of other topics that define my life.

Steve and I travel to San Jose California on Monday for the world premiere of 'Indestructible' at the Cinequest Film Festival. The entire family will be there to cheer Ben and Rebeccah on. I'll post the happenings each day on Burnt Chocolate so those who can't attend can enjoy a taste of the festivities. My plan is to have a great time, laugh a lot, play with my grandchildren and write every day about this celebratory event.