Burnt Chocolate

True Love

2009-12-10T08:50:00.010-06:00

Sisters Sandy and Ellie, Babsie (me, 8 yrs old) with Grandma Becky

The first time I fell in love, it was with two boys at the same time. I loved their tiny hands, the way they bounced on my back, stuck their fingers in my ears and blew raspberries in my face. Sixteen-month old twins Todd and Larry Klein were irresistible to me. At the age of eight, I was the older woman in their lives.

We lived on the first floor of a courtyard building in Hyde Park on the south side of Chicago. The entryway, decorated with faded floral wallpaper, black and white checkered tiles and worn burgundy carpet, always smelled of garlic, onions and tomato soup. The Kleins lived across the hall. When I came home from school, I could hear the twins banging and shrieking as they chomped on the wooden slats of their cribs. It wasn’t long before I was spending every afternoon with the twins who squealed when they saw me, gave me sloppy kisses, pulled my cheeks, stuck their fingers in my mouth, called me ‘Baba’ and asked me for ‘cuks’ – cookies.

I was oblivious to their mother’s disheveled, burgeoning appearance, the dirty laundry or baby detritus on every flat surface. I changed their diapers and played peek a boo until my mother called me home for dinner. While Mrs. Klein treated me like an expensive gift, I failed to notice she was swelling up like a balloon. By June she was enormous. In September she gave birth to triplets and the family of seven moved to a larger home. I never saw them again.

Few memories from my childhood linger with the intensity of that experience. Mrs. Klein, heaped across her over-stuffed chair, hair matted to her forehead, breathing heavily. The twins, wrapping their arms around my neck, giggling when I tickled them. By the time I graduated from high school, Todd and Larry had become a dim memory like a favorite toy or a great birthday gift. But the experience framed my life, the choices I made, and the path I took.

During the early 1940’s, women were encouraged to work for the war effort, then pressured to retire when the veterans returned home. Out of this milieu emerged leaders like Gloria Steinem and Marilyn French who captured the angst and frustration women suffered and transformed it into a movement in the early seventies, long after I’d married and had given birth to three of our five children. And while I support every woman’s right to choose, to explore her destiny, to have access to a career, to compete on an equal field with any man, my choice had been made years earlier.

My fascination with babies, children, motherhood have not diminished. I continue to write stories about the pitfalls, challenges, humor and angst of family life from the perspective of a mom, child development specialist, teacher and grandmother. Some will make you laugh, others might make you cry. I think of them as snapshots from my life that offer insight, appreciation, truth, angst, and most of all, love.

Rambling Milestones

2009-07-07T16:42:00.003-05:00

I love the series of ads Dennis Hopper does on TV about retirement, when he holds up his fist and says, “You need a plan!” I think to myself, “Right!” and then continue on just the way I always have, meandering now into the distant edge and beyond of middle age.

My mother lived to be 87 which means, if I follow her lead, I’ve only got 21 years left. When I think about that, a kind of anxiety sets in that rattles me. Not that I have a huge plan because I’ve no major goal other than to write an incredibly insightful book that the world applauds. But that doesn’t keep me working like a fiend which is what needs to happen if I’m ever going to get the thing finished. No, I work at a leisurely pace as if I’ve got nothing but time. I’ve added pounds, wrinkles, gray hair, but if you ask me how I feel, not all that different. In fact, I expected by now to have more of the answers to life’s secrets. Instead I find myself still struggling to make sense of an elusive world that becomes more, rather than less, complicated each year.

The year my mother turned 66, I wore size 8 bell bottom French jeans, flashy silver jewelry with my hair parted in the middle and hanging to my waist while Steve’s curled in a four inch Izro around his very thin face. By then, we’d all become partial vegetarians in support of his massive weight loss regimen. “Does this mean we’ll never eat lox again?” Josh lamented, distraught over such deprivation. If I close my eyes, I can see our Schiller Street apartment, the launch of Van Gorder Walden School, Matt wearing an eye patch, Ben dragging Barnaby, our Irish Wolfhound, around the block, Josh racing to the corner grocery for a licorice. It seems impossible that thirty five years have been swallowed whole.

When I was a young mother, I believed that if I invested my heart in each of my children, if I spent the time and energy to know each of them as individuals, if I learned to appreciate and honor each of their strengths no matter how foreign they might be from my expectations, if I treated them with respect, that when they became adults with families of their own, we’d be friends, we’d enjoy a peer relationship, a true and honest friendship. We’d trust in each other, depend upon each other, enjoy each other’s company, have fun together, understand each other, appreciate each other, help each other.

Whereas I’ve been wrong about a lot of things, it’s wonderful to realize that perhaps this most important wish I had for the future came true, a fine gift for a 66th birthday.

THE IPLEX DEBACLE

2009-01-31T15:58:00.006-06:00

CHOCOLATE: February, 2007. Indestructible won Best Documentary at the Cinequest Film Festival in San Jose. We cheered the standing ovation at the awards ceremony, the family gathered together in celebration, and most of all, Ben’s great improvement because of a new drug, IPLEX. When asked what his next project might be, he answered, “Coming Back.” Deafening applause. Euphoria. A potential future without the ALS curse at our backs.

BURNT: After only two months, IPLEX was withdrawn from the market due to a legal dispute and settlement agreement. Our exhilaration dissolved into disappointment, anger, despair. Despite a multitude of contacts with lawyers, judges, senators, representatives, influential community members, media magnates, the settlement barred the sale, no exceptions. Ben’s moving, brilliant essays were posted on the Indestructible website to no effect. Letters and phone calls to Genentech implored the company to rescind their position but failed. Ben lost his valiant fight against ALS on July 3, 2008.

CHOCOLATE: November, 2008. Based upon Ben’s positive response to IPLEX, TEAM IPLEX, made up of ALS patients and their families, banded together with a common purpose. Get IPLEX. They protested vigorously, sending emails and letters to the media, legislature, Genentech, Tercica, Ipsen and Insmed imploring, demanding and begging them to reach enough of an agreement to release IPLEX to the ALS community. A demonstration in Washington DC scheduled for November 11, 2008 inspired a greater level of activism and determination than ever before. And then an amazing thing happened. On November 8, 2008, all four companies agreed to release IPLEX to the ALS community. Miraculous! We met in Washington DC to celebrate our good fortune. Ben’s spirit was right there with us.

BURNT: February, 2009. Still no IPLEX. The FDA rejected the first of the IND/IRB (Investigational New Drug/Institutional Review Board) requests they received from ALS patients. Their reasons are spurious, based on “unsubstantiated reports” that the drug may be dangerous and perhaps fatal. This is totally false—there are no such reports worldwide. People die from ALS within 2 to 5 years of symptom onset. Death is inevitable. IPLEX has already been tested and found safe for infants and young children. The second reason offered is that “bloggers would want IPLEX for their own use, diminishing or negating the potential for clinical trials.” Except there are no clinical trials scheduled and the only way to get the drug is with an IND/IRB.

Welcome to the CATCH 22 World of ALS. You Can Help.

Call and/or write Congress urging them to write a ‘Morality Law’ that supersedes patents, costs and FDA sanctions in cases of incurable diseases such as ALS.

Write, Call, Email Media and your Senators & Representatives:

http://www.visi.com/juan/congress/

THANK YOU FOR YOUR SUPPORT!

TOGETHER WE WILL MAKE A DIFFERENCE!

Sandbox Tactics

2008-12-17T16:33:00.002-06:00

Three year old bullies in the sandbox don’t share their toys, throw fistfuls of grit at the other kids and take up more than their fair share of space. What we’ve got here in the banking industry are three year olds disguised as grown men and women who hog all the money, ignore pleas for fairness and refuse to provide credit. And what does Congress do? Sit in the corner and suck their thumbs, unable to pass legislation that would force banks to share what they’ve been ‘given’ with all the other kids in the playground, not just the toughies they hang around with. Something needs to be done about this bully behavior. And the wimps who refuse to stand up for themselves.

As Erik Erikson so adroitly put it, during the first year of development, trust vs. mistrust is the overriding issue facing infants. What that means is that mothers and fathers need to provide enough trust so that the baby believes his needs will be met, that someone will feed her, change his wet diaper and soothe her distress. At the same time, some amount of mistrust is healthy. After all, infants need to be able to self-soothe which is their first step towards independence and self reliance. Having to wait a little while for a parent to show up helps the baby find her thumb and tickle his own toes. More trust, some reasonable amount of mistrust and you’ll end up with a fairly healthy child who grows into an adult with a sense of fairness and cooperative spirit. Assuming the rest of the development goes along swimmingly. But whatever occurs, most agree this first year issue of trust vs. mistrust is huge.

What we’ve got here are a group of people who are on overload with mistrust. Maybe they didn’t get enough care and feeding as infants, maybe they weren’t encouraged to share, or maybe they are just a bunch of miserable bullies. Excuse me, but who actually needs millions of dollars a year when the bank or company he’s supposed to be running is about to become extinguished? Dividends for people who have plenty of money while retirement benefits plummet? Outrageous. Retention bonuses? A bonus by any other name is still a bonus. Where are these supposedly brilliant minds going to get another job when unemployment has reached new heights in every field?

I can hear that spoiled child in the sandbox yelling, “MINE!” All those who have received billions from Treasury Secretary Paulson and Bush – because they clearly are the ones doling out the candy and toys –continue to refuse to open up credit. Fireballs are being thrown all over the place and they pour on the gasoline. My guess is that if I asked the mothers of these bullies if they shared their toys in the sandbox, she’d answer with a definitive ‘NO’.

A Poem

2008-10-30T07:41:00.004-06:00

"On NPR's All things Considered last night, they did a story about black folks living in very red Missourri and what this election means to them. Many of those interviewed had never voted because they either a) didn't care, b) didn't think that their vote mattered, or c) didn't know how to vote.

Some of their stories and views were very interesting, and for those interested I'm sure the story can be found on the NPR website..

the piece ended with one of the guys reading a text message that he got from a friend and was also passing around......

Rosa sat so Martin could walk

Martin walked so Obama could run

Obama is running so our children can fly...

I love things that are concise yet say so much with so few words...

pass it on..."

From Rebeccah Rush

The Ugly Reality of Racism

2008-10-08T11:56:00.005-05:00

Is there anything else to think or write about other than the upcoming election? The miserable, failing economy? The never ending war in Iraq? The lack of intelligent leadership in this country? The proliferation of greed that permeates our lives? I wish I'd written the message I received yesterday, but since I didn't, I'm doing the next best thing - spreading the truth in hopes you'll forward it to everyone you know, to rekindle the American spirit of true equality, appreciation for differences and striving for excellence.

What if John McCain were a former president of the Harvard Law Review
What if Barack Obama finished fifth from the bottom of his graduating class?
What if McCain were still married to the first woman he said 'I do'to?
What if Obama were the candidate who left his first wife after she no longer measured up to his standards?
What if Michelle Obama were a wife who not only became addicted to pain killers, but acquired them illegally through her charitable organization?
What if Cindy McCain graduated from Harvard?
What if Obama were a member of the Keating-5?
What if McCain were a charismatic, eloquent speaker?

If these questions reflected reality, do you really believe the election numbers would be as close as they are?

This is what racism does. It covers up, rationalizes and minimizes positive qualities in one candidate and emphasizes negative qualities in another when there is a color difference.

Let’s say you are The Boss... which team would you hire?

With America facing historic debt, 2 wars, stumbling health care, a weakened dollar, all-time high prison population, mortgage crises, bank foreclosures, etc.

Educational Background of the Candidates:

Obama:
Columbia University - B.A. Political Science with a Specialization in International Relations.
Harvard - Juris Doctor (J.D.) Magna Cum Laude

Biden:
University of Delaware - B.A. in History and B.A. in Political Science.
Syracuse University College of Law - Juris Doctor (J.D.)

vs.

McCain:
United States Naval Academy - Class rank: 894 of 899 [the bottom 1%]

Palin:
Hawaii Pacific University - 1 semester
North Idaho College - 2 semesters - general study
University of Idaho - 2 semesters - journalism
Matanuska-Susitna College - 1 semester
University of Idaho - 3 semesters - B.A. in Journalism

Now, which team are you going to hire ?

PS: What if Barack Obama had an unwed, pregnant teenage daughter?

Traveling On

2008-09-10T11:05:00.004-05:00

I’m in Charlevoix for the week with seven other good women. Water, stones, sand dunes, trees, grass. The empty beach reminds me of summers in Union Pier when I was a child. If I close my eyes, I can smell the pungent odor of clay, taste melted cream cheese and jelly sandwiches, feel the texture of peeled green grapes against my tongue, relish the flesh as it bursts warm and watery in my cheeks.

The northern tip of Michigan has its own flavor. Multicolored, striated Petoskey rocks form a crust along the water’s edge. Across the bay on Washington Island, pure white stones bake in the sun. Streams along the edges of boulders produce silky strands of orange and mustard colored moss. I stare at the waves, mesmerized by the vast space. The season has shifted from summer heat to crisp autumn.

The women move easily among each other. We take walks down the beach, watch sunsets, collect and paint rocks, cook meals together, share family stories. One has a child in college for the first time, another is planning a wedding, a third is a grandchild’s birth. No matter what tale I begin to tell, Ben shows up, his antics woven deeply into the fabric of my life.

In September 1992, Ben returned from Paris. He threw everything he owned into the back of his new red pick-up truck and drove to California to work for a film company, an impulsive venture, the first of many. Nine months later, he transported art from Phoenix to Toronto to earn a few hundred dollars. After depositing the shipment, he surprised us, arriving in Chicago at dinnertime.

“I just started packing my stuff and couldn’t stop. Los Angeles is not for me.”

Ben traveled light, moved impulsively and left furnishings with abandon. When his moment came on July 3, he took his chance to discard the joy that had become a burden.

Day by Day

2008-08-21T12:38:00.005-05:00

Each morning I say today is the day I will post on Burnt Chocolate for all the good people who have asked about how I am feeling, how our family is managing but the days and weeks passed in silence. Until now. What I want to say is that we are all doing well, returning to some semblance of normalcy. That's what I wish was true. And in some ways, it is true. We've gone to a movie, eaten a few meals out, spent some time with friends. We had a restful week in Connecticut with our son Matthew and his family. We spent a day in Chicago with Josh and his daughters. Zoe makes us laugh with her antics.

But the deeper truth is that there's a huge space in my heart that will never be filled. I know that's true. At first I thought it was possible to find another piece of work or love to fill the hole, that eventually, it would somehow close up or shrink. But I've come to realize that learning to live with the emptiness is the task at hand.

When a friend suggested I write about the grief to help me work through the agony, I laughed. Is there anything else for me to write about now, any stories to tell that don't end up belonging in some way to Ben? It's hard to get through the day without feeling bombarded by unfulfilled wishes or how much Ben would have enjoyed the concert last evening on the square or how we would have picked apart the new Woody film. Take each day and do the best you can. And so it goes.

Josh's Tribute to Ben

2008-07-16T10:44:00.009-05:00

Matt, Josh and Ben 1991

Dear Ben,
Today is a very sad day for me, for you are my brother, and now I must learn to live without your wonderful smile. I didn't quite know what to tell your friends and family about you so I decided to write you a letter instead. In your final days, while the spoken word escaped you, you were still writing things down, with your toes and your beautiful eyes, guiding the curser of your life. They tell me you worked until the very end but I will let others tell of your successes and your incredible work ethic, for these are things of less import to me today. You

were such a wonderful brother to me Ben, and truly, you were my best friend in this world you have left me to dwell alone, to navigate without you, my information post, my source of information, my personal news bulletin of my life. You knew me better than anyone. Even when I was screwing up, really screwing up, really bad, you didn't care, and you listened to me, and more important, you always understood how I was feeling. Do you have any idea how I am feeling today? I will tell you. There is an emptiness in my heart that I fear will never be filled, now that you are gone. Can I tell you what a wonderful man you really are? Do you want to know? I know you don't like flattery so I will keep this short, a page or less they told me, but mind you, whatever I have to say, doesn't offer the words you deserve at a time like this. I feel that if I was a runaway train going down the tracks, running wild and free, you were my conductor hitting the breaks, slowing me down, getting a handle on things, and you did, many times, more than you can possibly remember. And if I was a tunnel, empty and hollow, you were my light, filling me with joy and happiness, as my day became complete. I looked to you for so many things in this world, but most of all, I looked to you for answers. You were always smarter than me and you always knew the answers to my questions, before I ever asked them. Answers to the questions I never wanted to ask. Answers to the puzzles of my life when things were going wrong and so in return, I so wanted to help you with your disease, in any way I could, to get over these chains, your body, that eventually got the better of you. I wanted to help you fight it but I didn't know how, and so I suffered with you my friend, every step of the way. The only thing I know is one more instant of your time, out of your busy day, to be with you, and to hold your hand through what must have been a terrible ordeal, is something I will never have. The past few days, I have simply wanted to know how to say goodbye to a man I loved more than anyone I have ever known. Can you tell me that? I don't think so. I don't think anyone can truly say goodbye to someone as beautiful as you, but I try my friend, every day, to say goodbye, but I have failed. I simply cannot say goodbye to someone as kind and incredible as you. And so, instead, from this day to my last, instead of attempting to offer you my condolences for your passing, my respect for your humanity, my humility for your dignity, my suffering for your pain, my friendship for your loneliness, my health for your sickness, and all of my time in this world, however much you would like to have, from this day until my last, I will simply have to live with saying to you, dear Brother, Hello. I will greet you, welcome your smiling face, your wonderful demeanor, your kind words, your watchful eyes, each and every time I watch a little league game in the park, and see a small boy at bat, trying his best to hit the next great homer, or when I see a sailboat passing the tides and the time with a friend, drifting aimlessly on the water, strong as steel in a sea of loneliness, or when I hear a child laugh, and giggle, as I methodically punish the little man, or when I hear a song on the radio, a French tune I know you would love, or when I go for a walk and see people I've never met, happy about something, but nothing in particular, and I think, maybe they knew Ben. I miss you dear brother, now, and forever, and while I know it is my duty to say it, and while I try to muster the word goodbye, it escapes me, and so, until we meet again, I will simply settle for Hello. I love you Brother, as no man has ever loved a brother, now, always, and forever, see you at the ballpark.

Your loving brother,

Josh

Eulogy for Ben

2008-07-12T09:57:00.005-05:00

Many of you first met Ben after his illness struck. Some of you knew him before. I had the great pleasure of birthing this magnificent man into the world. And he gave me the rare gift of being able to hold his hand and kiss his cheek as he took his last breath.

From the time Ben was three, we teased that if we took him deep into the forest and cleared his pockets of breadcrumbs and stones, he’d still find his way home. The middle child of five is no easy place to land in a family, but Ben served as our family heart. His feisty spirit challenged each of us and bound us together from the very beginning.

Several months after his diagnosis he said, ‘Mom, I’m going to make a movie about ALS.” Without a clear focus or story line, he began to film and, more importantly, make a life for himself to fill whatever days remained with purpose and love. This past week, we arrived in Cleveland with the great hope of extending Ben’s life in the ways he most wanted to live. He filmed those three final days for posterity. We left Cleveland with Ben at peace, finally.

I miss his humor and wit and grieve for the days we’ll never have. But inside I feel him growing yet again as the ephemeral spirit he was, infusing me with energy and purpose to make my life meaningful. Nothing can ever replace his glow, but in the days ahead, we’ll feel his love as we continue the journey he began, and with his spirit of adventure.

When the film was rejected from Sundance last year, I was devastated and ranted in my usual fashion. Ben said, “Don’t worry. We’ll find our way.” Just as Indestructible found its way into over a dozen film festivals and awards, so Ben has found his way. With his spirit and light to guide us, so shall we all.

Just a few weeks ago, I wrote Ben an email, as I often did when telephone conversations became too difficult. It read. . .

Dear Ben,

In case I haven't said it lately, I'm so proud of you, of all you've achieved, how you maintain focus and use everything you've got to make this world a better place than you found it, in spite of the challenges you face every minute, let alone every day. Sometimes I just sit and bask in the wonder of you.

Love Mom

When the days ahead become difficult, I will remember Ben’s fortitude and strength and relish the gift having known him every day of his brief, relevant life.

Candles and Cakes

2008-04-29T17:09:00.007-05:00

Zoe, our five year old granddaughter, had an overnight with us several weeks ago. It was just the two of us that night. I fixed bulls eye eggs for dinner and had already lifted my fork when she said, “Grandma, it’s Friday night. Don’t you think we should light the candles and say the blessings?”

Right. The child had brought with her a small challah. Together, we put the candles in their holders, found the matches, poured the wine. I was about to strike the match when she said, “First we have to take a deep breath and welcome Shabbat.”

Right again. After dinner, we went upstairs to read a few stories together until it was time for her bath.

“Grandma, I’d like to relax for a while.” She leaned back in a bubble filled tub and sucked her thumb.

“Sure, Zoe, take a soak.” I twirled her hair into a wet bun at the top of her head.

“Let’s have a conversation.” Zoe pushed the whirlpool button on, then off.

“What would you like to talk about?”

“Do I get to pick because I’m the guest?”

“Sure.”

“How do you know when someone dies?”

Her question took me completely by surprise although I knew death had been on her mind for some time. She misses our dog Emma and often asks questions about a grandmother she never knew. She knows her uncle is seriously ill. I wanted to give her just enough of an answer but not too much. After all, she’s five years old and you never know the genesis of a five year old’s questions even if you think you do. Remember the Art Linkletter story about the little boy who, after asking his mom where he came from, learned the basics of sex and babies when all he really wanted to know was where he was born, Chicago or Detroit.

Not wanting to give her more information than she needed, I said, “A person stops breathing when they die. That’s how you know.” Satisfied with that answer, she asked if we could bake a cake together in the morning.

What I find so astounding and wonderful about this child is her capacity to consider the harsher realities of life and, in a breath, swing fully and with complete abandon to the joys.

A Wyoming Crone

2008-04-12T23:05:00.006-05:00

When friends and I meet for morning coffee once or twice a week, we talk about the usual stuff of politics, movies, travel plans. A few days ago it was wrinkles, face cream and the ravages of advanced middle age. That conversation made me think of an incident on a trip our family took years ago.

We rode into the Yellowstone wilderness on horseback with our three sons, then all under the age of ten. The wranglers pitched our tents and prepared our meals. Looking for a family pioneer experience, we'd given no thought to the isolation, lack of medical facilities or danger. We rode forth in blistering heat, rain, then sleet and finally freezing cold. On day five, we reached the pinnacle of the mountain range. From our vantage point, we saw the rivers flow in opposite directions from the Great Divide. Along with the mules and wranglers, our group had stopped our horses in a long row to rest and enjoy the magnificent view.

Hail, the size of golf balls, then pummeled us. I remember thinking we could have been lying on the beach in the French Riviera for the same money. I sagged in my saddle. My back ached and bottom hurt, the hail stung and more than anything, I wanted a cup of hot coffee and my own bed.

I heard the horse and saw the dust clouds even before the woman rode past. She sat tall in the saddle on a magnificent stallion, her back rigid. White hair hung past her shoulders from beneath a wide brimmed, worn leather hat trimmed in feathers and beads. Her long thin face was creviced and tanned. She stared straight ahead, as if we were invisible. And then she was gone. After five more excruciating days, we arrived back at the ranch and flew home. But the vision of that woman remained a powerful memory, although it’s only recently that I’ve come to understand why.

She projected a quiet strength and confidence, comfortable in her own skin and place in the world. Unconcerned, like the rest of us, about weight, wrinkles and face cream, I suspect she was too busy living with stalwart clarity to ponder the meaning of her life.

OUR EMMA

2008-03-21T10:30:00.005-06:00

Emma’s gone. She died at the end of January after a brief illness of severe arthritis combined with spinal stenosis that incapacitated all four of her legs. Twelve and a half is old for a dog like Emma whose mixed heritage of Sharpei, Pit Bull and Black Lab frightened more than a few passersby. But for most who met her, the wrinkles congregated around her face and her sleek black coat combined into a regal beauty and loving demeanor.

As a pup, she challenged us every day, as she ate batteries, table legs, one fur jacket, wood trim, plaster walls, and dismantled a steel cage. A constant moving target, she skittered up and down front stoops, sniffed bushes, and reversed direction halfway across a street.

Emma moved from puppy hood to old age overnight. One day she leaped onto our bed, balanced on her hind legs to open the laundry room door for a drink and raced down the street to chase a squirrel. And then she didn't.

In November, Emma refused to walk more than five feet past the front door of our building. She stopped walking up stairs to her bedroom mat. Food lost its charm. I carried her outside, fed her herbal supplements and scheduled acupuncture treatments.

The last weekend in January, our entire family assembled for the Waisman screening for Indestructible. She seemed to rally. Late one night, when Ben needed help, Emma licked Elizabeth, his caregiver, until she woke up. But after everyone left, she collapsed for the last time.

Every day, I miss Emma’s crazy tail whipping against my leg, her smushy face and sweet eyes. I still hear her coming up the stairs to visit me at my desk. She enjoyed a full life, was well loved and is missed by many, pretty much what we all hope for.

Emma’s Legacy:
1. Love with abandon
2. Find joy in the small moments
3. Stand firm when it matters
4. Show respect for the alphas in your life

INDESTRUCTIBLE WINS AGAIN!

2008-03-12T12:01:00.002-06:00

Indestructible won the jury prize for Best Documentary at the Lake County Film Festival and Best Documentary at Byron Bay Film Festival in Australia!
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Breaking News! We have had a generous donor commit to matching your contributions for the 50 to 1 Campaign. Tom Shadyac, the Hollywood Director and Producer of Bruce Almighty fame, will match up to $50,000 of your donations....and you get a signed DVD. Help spread the word. You can make the difference.
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50 to 1 CAMPAIGN
379 Contributions, 1621 to go....
Own one of the original 2000 signed copies of Indestructible AND change the world!
We like long shots. That's why we are working to change the face of ALS. That's why we made a movie directed by and starring a guy with a fatal neuro-degenerative disease. Now a critically acclaimed, award winning documentary that has sold out film festivals and received the enthusiastic endorsement of one of the leading neurological research centers in the world, the Indestructible long shot is starting to pay off. Believe in this dream and make your own mark on the face of ALS. We need your help to continue the important work being done.
We are betting that 2000 people have 50 bucks to spare....and help wipe ALS off the face of our planet. When we reach our 2000 donor goal, each 50 dollar contributor will be sent an Indestructible DVD signed by Ben Byer -yeah it's corny but that's what we have, signed with his foot by the way- two Indestructible buttons, and a letter of gratitude. In addition, for every 50 dollar contribution, one DVD will be sent to an ALS patient free of charge who would otherwise be unable to see the film. The $100,000 raised by 50 to 1 will help pay for a limited theatrical release, subsequent DVD releases and marketing to bring Indestructible to a global audience.
It's fifty bucks. That's a week of lattes, a carton of cigarettes, a night at the movies, a few drinks at the bar, a fill up on the suv, some sushi, you get the picture. If just 200 of you recruit 10 friends we will reach our goal. So please help us get this film to the people who want to see it most... you!
Progress will be posted on our website and DVDs will be sent when 2000 contributions of 50 dollars are received.
This is a limited edition DVD pre-release. Only 2000 copies will be available for 50 to 1 contributors and 2000 will be donated to ALS patients. Indestructible will be available for purchase at a later date for those not participating in 50 to 1.
(Reprinted from www.indestructiblefilm.com)

Random Places

2008-02-27T23:29:00.006-06:00

Perhaps you’ve wondered how Steve and I ended up in Dodgeville, Wisconsin, of all places. The short answer is that around our thirty-fifth anniversary, we thought a place in the country might be fun. A family retreat for our children and grandchildren appealed to our sense of adventure. But, like a lot of things, it’s more complicated.

In 1974, we moved to an expansive home next to Lake Michigan in Evanston, Illinois. Some years later, we renovated the nearby University Club, converting it to a celebrated public museum only to have it destroyed by an electrical fire before its third birthday. Once the details of that disaster settled, and the last of our children left for college, I felt the urge, the necessity, to move away. It didn’t matter where. Just someplace new and different. Long Grove was both of those things and it was there we experienced both anonymity and life as incorrigible misfits. After two years, we returned to downtown Chicago, a place we’d enjoyed living as a young couple. Our four story townhouse suited us perfectly and we’d probably have stayed, except that our landlord, Lee Miglin, was murdered by Andrew Cunanen in a garage that bordered our back yard.

Then we saw “Random Hearts”, a forgettable film except for one relevant scene where Harrison Ford and Kristin Scott Thomas rendezvoused at an ancient log cabin. When the river appeared in the background, rushing behind an autumn blaze of trees, I knew that’s where I wanted to be. Out of the city and into the woods. A few months later, we toured Wisconsin as far west as the Mississippi, north to Sauk County, south to the Illinois border and came up with a hundred acres of trees, meadows, valleys and ridges, a solid house, a stream, herds of turkey, deer, a few foxes and tons of wildflowers. Dodgeville was six miles away. Madison the closest city.

We added a studio, a barn, bought an air-conditioned tractor with a CD player designed for city folk and left Chicago congestion behind. I found a job as Director of the Family Resource Center and for a time, life was comfortable. We drove to Madison once a week for a film and dinner, took a few classes, made some new friends, and traveled to Chicago and St. Louis to visit our children. Then Ben was diagnosed with ALS.

We live in Madison now. Our condominium incorporates everything I’ve loved about our past homes– lake views, new construction, high style, family nearby, great friends, wonderful restaurants, theaters and entertainment.

Dodgeville is for sale.

Building the Dream

2008-02-13T19:10:00.008-06:00

Forty years ago, John Kennedy, Robert Kennedy and Martin Luther King inspired visions of hope, respect and a world view of peace. Then, within a few short years, all three were torn from our lives. We’ve been wallowing in the squalor, grief and disappointment, the mediocrity of a government steeped in scandal for forty long years. Finally, we’ve a chance to come out of the desert and build the dream into reality with a leader who embraces integrity, intelligence and compassion.

Barack Obama mesmerized over 20,000 attendees Tuesday evening at the University of Wisconsin in Madison. His vibrancy and charisma offered the belief that together we can recover meaning and purpose for ourselves and our country, restore respect and rebuild community. Obama’s plans to provide college tuition brought cheers and roaring approval when he said the money would have to be repaid in the form of community service, that hard work lay ahead, that sacrifices might have to be made. He uses the inclusive pronoun ‘we’ and speaks of our future together, recovering the light we thought extinguished.

Later that same evening, I read once again, Ben Byer’s extraordinary essay, The Reality of Hope, published on his blog this past Monday. His brilliant tour de force weaves together the political travesty of our times with his physical disintegration, reminding me, once again, how the political climate affects each of our lives. How embryonic stem cell research efforts to find a cure for Parkinson’s, ALS and many other horrific diseases has been polluted and hijacked by the few who consider Monty Python’s “every sperm is sacred” joke a truism.

Locked inside his failing body, Ben’s intelligence and sense of hope for himself and so many others, shines through. Together with Barack’s vision, my own wish for a brighter day might have a chance. We can each become a part of this amazing moment in our history. We don’t have to wander another 40 years in the wilderness.

VOTE OBAMA!!!

Storms

2008-02-06T13:35:00.001-06:00

We’re buried inside on this snowy day. Winds blow thick tufts against my balcony door. Driving is a needless risk, walking past the mailbox a foolish notion. Super Tuesday primaries have settled enough to turn off the television and enjoy Leonard Cohen’s music, read a book, write a few words.

Years ago, when Rebeccah was a toddler, a similar snowstorm piled mountains of the stuff on our front lawn, covering sidewalks in five foot drifts and blockading streets. A Chicago mayor lost her job, disgraced by irate citizens for her delayed response to the blizzard. But for me, those few days remain a cherished memory. Time stopped. We had plenty of food, wine, books, each other. Quiet moments, safely inside. Respite.

I’ve recently emerged from a different kind of respite, one filled with fear and sadness. But being at this end reminds me that I can still surface, that I still have enough spirit left to carry me the distance.

Just a few days after I last posted, Steve slipped on ice from a similar storm, while walking our adored, twelve year old Shar Pei-Staffordshire Terrier, Emma. To avoid crushing her, he landed against the curb and ruptured his kidney. After 12 pints of blood and 10 days in intensive care, he came home to a slow recovery. While he improved, Emma deteriorated, first from arthritis and then from a neurological insult to her spine. Time slowed as I barricaded myself inside, carried Steve his dinner, helped Emma walk. No distractions existed apart from what was needed in the moment.

Three weeks later, Emma died. The next day, Steve returned to the hospital for yet another week with a pulmonary embolism. I found Pema Chodron’s book on my shelf, When Things Fall Apart, and managed to read a page a day. Once again, my days and evenings were spent at the hospital. Steve improved. I joined a friend for a coffee, squeezed in an hour at the health club. Two days earlier than expected, I brought Steve home.

Today, for the first time in two months, I’m writing a few words. I can talk about Emma without crying. Steve looks trim, having lost more than 50 pounds, and feels confident his health is improving. Freezing rain coats the road below my window. And so it goes.

And the Good News is. . . .

2007-12-12T11:30:00.001-06:00

She’s Back! Sandy Wallman, my sister and wonderful friend, has recovered almost completely from the Chicago wind’s savage attack in August. A mere three months later, she’s back in her own apartment on Lake Shore Drive, living by herself once again, reclaiming her life. All wounds have healed and except for minor issues, like needing a nap in the afternoons or forgetting where she put her keys (wait, that happens to me and I didn’t get hit in the head). She’s enjoying her days and hopes to return to a realistic work schedule in January. All of your prayers, good wishes and concern have definitely made the difference. Thank you from the bottom of all of our hearts!

I’m thrilled to announce “Indestructible” won Best Documentary Film in the Midwest Film Festival contest conducted this past month. As the Laurel Leaves accumulate, so has our belief that 2008 will become an important year for the film, for Ben and for our entire family in so many ways. So I thought I’d take a moment to share a little bit about what’s been happening in the Byer family.

The St. Louis Byers moved to Connecticut! Matt, Susan, Adam, Zachary and Elizabeth love their new life in a beautiful home with wonderful new friends and neighbors. Matt’s business opportunity has proved to be all he hoped for and more. The children shifted to their new schools like the troupers they are and have adjusted wonderfully. So much for moves being traumatic experiences!

Josh has created a beautiful life for himself in downtown Chicago. His daughters, Mackenzie and Abby, love to spend time with him in the big city. They’ve visited every museum at least once and have their favorites they like to return to regularly. They’ve taken a few trips together and like to visit us in Dodgeville, which, as a matter of fact, will be happening this weekend for a little Chanukah celebration.

Ben and John continue to amaze me because they are both willing to go the extra mile every day. They live in a great apartment in Chicago, not far from brother Josh. During the season, Ben rarely missed John’s baseball and soccer practices and games. Movies, plays, poker games with the guys, summertime barbeques and winter visits to Dodgeville – like Energizer bunnies they keep going and going and going.

Sarah, Barry and Zoe are happy with their new Madison home, beautifully decorated, warm and cozy. Zoe has made more friends in her new school than I can count. What’s especially wonderful for us is having them nearby. A last minute dinner, an unexpected visit from Zoe, a morning breakfast together is a wonderful treat. Barry’s new job is both challenging and satisfying for him. And Sarah? She’s on the prowl for a place to put her talents and has a few things in mind.

Babies, babies and more babies. Rebeccah and Drew are surrounded and doing a fine job of caring for Henry and Elliot. Drew has a new job in theater, his first love. In the middle of nursing, changing diapers and chasing a toddler, Rebeccah still has time to care for “Indestructible” sort of a third baby when you think about it. And while I miss having them nearby, I love visiting them in Winston-Salem and relish the new life they’ve created.

Steve fights the fight every day for Ben and others with ALS. He traveled to Toronto for a symposium just two weeks ago, met with researchers and physicians, all working to unscramble the ALS puzzle. I continue to write almost every day and have joined a great writer’s group. I’m supposed to work out at the new health club across the street three times a week. I love Burnt Chocolate, the short story I hope to complete this month, my newfound friends in Madison, my old friends in Chicago and Dodgeville. We travel often to visit family and friends. Life is good.

And you?

Elliot Ben Rush

2007-11-28T11:46:00.001-06:00

Meet our newest grandson, named for my father and just as handsome and sweet as his big brother Henry, who's fifteen months old and fast on his feet. These past two weeks I immersed myself in their household rhythm, changing diapers, wiping noses, rocking, tickling, singing, laughing. While Rebeccah nursed Elliot and Henry napped, I knit sweaters, hats, stuffed animals and watched the cycle begin once again. We discussed the ins and outs of pregnancy, delivery, milk production, sleep deprivation, diaper rash, nipple pain, cramps, headaches, tension, paper vs cloth diapers. Did Elliot sleep better after a supplement? After nursing? What did I think? What does anyone think?

In 1967, formula was the rage. Few breast fed their baby. By 1974, the year Rebeccah was born, the switch to breast milk was in full swing and formula had dropped from vogue. Neither view takes into consideration the individual situation for each mom and baby, how mom feels about nursing, how life interferes and sometimes demands flexibility. Normally, I’m not a middle of the road kind of person, but it seems to me there ought to be room enough for moms and dads to care for their babies in whatever way feels right and works for them.

I captured my own dilemma in this Bedtime Story written several years ago.

Good Morning

Stephen kisses me goodbye saying, “Call me if you need me. I’ll be home by 4:00, promise.” The door closes. I'm alone in our two-bedroom apartment for the first time since our ten-day-old son Matthew was born. He lies next to me on our bed. The Beatles croon “Norwegian Wood” on the radio. Invisible ropes tighten across my chest. My legs feel numb, my breath shallow. Matt yawns and grasps my finger, then relaxes back to sleep. His hand opens, releasing me. A miracle-I can move.

I leave Matt curled in the center of our king sized bed, shower and dress, forcing layers of accumulated fat into knit pants and shirt, three sizes larger than I wore six months ago. A vice clenches my head. Pain jabs at my neck. My breasts ache and leak against the front of my shirt. The tea Steve made for me earlier is cold and watery. I’m hungry, nauseous and more than a little terrified as I spoon my body next to Matt.

I consider calling my mother who is five hours away, but dismiss the notion. I have a baby; I am not the baby. My temples pulse as I plaster a bag of ice cubes over my head. Any minute Matt will cry, I will not have eaten anything and my head will explode into tiny bits. I call the doctor, who for a change, is available for a little chat.

“My head hurts. I can’t eat. What should I take?” I blubber into the phone.

“Two aspirin and you’d better eat. You’re the one who wants to breast feed your baby. If you don’t, your milk will dry up.” I chalk up his irritable tone and brisk demeanor to his pomposity, hang up the phone and resolve to find a new doctor. I wash down the medicine with three glasses of water, and reconsider my decision to nurse.

I was the oddity on the maternity floor, a nuisance to the nurses who threw Matt at me for his 2:00 am feeding and raced back to the nursery to stick bottles into the mouths of the rest of the newborns. Everyone else on the floor slept eight hours straight. Except me.

All my friends used formula, shrank back to size in two months, let the dad give the pre dawn bottle. When Matt sucks, my stomach pinches and nipples burn. Liquid oozes from every orifice. I no longer care that I am a baby and call my mother. The phone sticks to my palm as I reach for the Kleenex.

“This is killing me. What if he’s starving?” I rant.

“It’s for the immunizations.” she says, “Stop worrying. Drink a lot.” She pauses while I blow my nose. “Don’t you want a healthy baby?”

“Of course.” What a crock of guilt. “What about me?”

“Your uterus shrinks faster when you nurse. You need to be. . .” She hesitates, groping for the right word. “. . . to be patient.”

I hang up and sob into my pillow. In two days my parents arrive for a week and then we’ll see. A piercing, gurgling cry interrupts my pity party. Matthew’s fist searches and jabs the air. I change his diaper, lift my sodden shirt, and inhale deeply as his mouth grasps my tender nipple. It’s ten in the morning and my head is beginning to clear.

Best of the Midwest Awards! Vote now for Indestructible

2007-11-16T09:12:00.001-06:00

Dear Friends,

Indestructible is pleased to announce our nomination for the Best of the Midwest Awards, hosted by the Midwest Independent Film Festival. Please show your support and cast your vote today!

Indestructible is nominated for Best Documentary, Best Director, Best Cinematography and Best Editing.

Winners are chosen via online balloting from both the public and the festival's Screening Committee. Online voting continues through Tuesday, November 20th.

Click here to view the complete list of nominations then click here to vote!

www.midwestfilm.com

Thank you.
ALS Film Fund

What Is Next For The Film?

There are some very commonly asked questions that we receive about the future of Indestructible and what is the next step for the film. Here are some of those answers.

What is happening with the film?
We are currently putting the finishing touches on the film (such as an original score) and finalizing all legal and licensing issues. We are also promoting Indestructible on the festival circuit, talking to distributors and finding new and innovative ways to show the film.

When will the film be available to purchase?
We anticipate a limited DVD release by early Spring 2008.

Where can I see it at a theater?
We are currently planning screenings in many cities across the US and Canada. We will keep you updated on our website and through newsletters of any upcoming screenings in your area.

Do you still need funding?
Yes, ALS Film Fund is funding this film and its current distribution strategy solely on contributions from generous supporters and we are still in need of donations.

Can I host a screening in my area?
Yes, you can! Please email alsfilm@gmail.com to put your name on the list and we will send you more information soon.

What else can I do to help?
You can forward this email newsletter, send people to our website, ask them to donate, and most importantly, tell everyone you know that ALS is not something to be taken lightly and it is everyone's problem. Together, we can all make a difference.

We're Back. . .

2007-10-15T21:49:00.001-05:00

. . after two wonderful weeks in Spain and Portugal. From Las Ramblas in Barcelona to the Alhambra in Granada, we enjoyed mild and sunny weather every day, walked dozens of miles, saw Picasso’s evolution and Miro’s legacy. A brief train ride took us to Toledo, an ancient city where centuries ago Christians, Jews and Muslims lived together in peace, something of a miracle. Rugged coastlines, circuitous streets in Seville and magnificent cathedrals boasted thousands of years of history. We tasted sweet custard and lobster, flan and baby piglet, tapas and sixteen varieties of olives.

Mid trip, the Chicago premiere of “Indestructible” took place to a sold out audience that left scores of people without seats. The evening’s excitement reached us via email from family and friends able to be there in person. Josh was in New York on business and unable to attend. Matt and his family live in Connecticut now. And so it goes. Busy lives pull us in different directions. All of which reminded me of a story I wrote several years ago about the shifts and changes as families evolve.

Bicycles

After Sarah and Barry’s wedding in 1995, Steve and I moved to a small house on Division Street in Chicago, three blocks from our apartment where my motherhood years began. Instead of pushing a pram to Goudy Square, I walked our dog Emma around the neighborhood, rode my bike through the park, shopped on Michigan Avenue. Not much had changed. The Chinese Restaurant where Matt had his toddler meltdown closed years earlier. The grocery store where Josh and Ben shopped alone for the first time was still open.

One particular morning, I brought my coffee outside to enjoy in the small backyard patio. To my chagrin, the spot where my bike had been locked the night before was empty. At first I thought Steve borrowed it or moved it to the basement during the night for some inexplicable reason. Then it became clear that a person with remarkable skills clipped the chain, hoisted the bike over the six foot spiked iron fence and rode it into oblivion, one of several bicycles stolen through the years never to be recovered, a condition I’d accepted years earlier as a pitfall of city life. Except this time the bike was cheap and easily replaced. I laughed at the thief's ignorance as I drank my coffee and soaked in the early spring sun. How many of our bikes had been bought, sold, lost, stolen? Wasn’t Matt’s bike missing from the driveway the day after we moved to Evanston? How many times did we reach the Bahai Temple in Wilmette before turning back? Who crashed? Who never fell? And so, my mind wandered back to the days when each of our children mastered that elusive two wheeler.

Matt struggled to keep his bright green and yellow banana bike with neon spokes and abrasive horn upright. He blamed the bike for his lack of coordination and more than once dropped it against the cement and trudged off. Frustrated, I challenged him to get on and ride the thing or we’d return it. He was up, then down, then up and steady for three lines on the sidewalk. Lift off.

Josh learned to ride his bright red Schwinn like a horse. He flew along lightly holding onto the handlebars while the bike managed to balance itself. I watched this agile little boy fly past me as I called “slow down” while he shouted back “how do I stop?”

Ben practiced after kindergarten for one solid week, mastering different bike riding aspects each day. Monday he practiced start. Tuesday was stop. Wednesday turns. “Need a hand?” I’d asked. “Naw. I got it.” Ben bent into the task at hand, focused and confident. By Friday, he was prepared to ride with his brothers when they returned from school.

Matt helped Sarah with bike fundamentals. Lithe and physically coordinated, she learned easily and rarely if ever, fell. But of course, she never went too fast and looked for smooth roads. I don’t know how Rebeccah learned. One day she'd shifted from her tricycle to Sarah’s bike and just appeared riding along the sidewalk with a smile on her face.

For the next dozen years, we rode our bikes together in search of ice cream and adventure, an organized unit, crossing streets in sync, then drifting apart. Although I didn’t realize it then, our bike riding days offered a theme for the years ahead.

Indestructible Midwest Premiere!

2007-09-21T14:50:00.001-05:00

Midwest Premiere of 'Indestructible' at the Midwest Independent Film Festival on Tuesday, October 2, 2007.

Doors open at 6 p.m.
Film begins at 7:30 p.m.

Landmark Century Centre Cinema
2828 N. Clark St.
Chicago, IL 60657

Tickets are $10, and can be purchased the day of the event. Ticket price includes a cocktail reception before the film, panel discussion, screening and after party. Visit website for full details. http://midwestfilm.com/

Writer and Director Ben Byer, Producer Rebeccah Rush and Editor Timothy Baron will be in attendance.

Come support 'Indestructible' in our hometown! Please forward this announcement to your friends, family and colleagues and donate whenever possible.

Awareness means change. You have the power to make a difference.

The ALS Film Fund thanks you for your support.

Special Note: Do you have friends or family on the east coast? 'Indestructible' has also been accepted into the Newburyport Documentary Film Festival in Massachusetts and will be screened on Sunday, September 30th. Spread the word.

Great News

2007-09-08T20:22:00.002-05:00

Thank you so much to all who sent their prayers and hopes for Sandy's recovery. I'm glad to report that she's on the mend. After a week in ICU and a week in general hospital care, she's now in the Rehabilitation Center relearning how to care for herself and regain her memory. We've been told that our expectations can be high, that she will in all likelihood regain all that she's lost, but the work ahead for her is challenging. We're grateful, hopeful and looking forward to the day she will be released and home again. Until then, please keep those prayers coming. They mean the world to all of us.

On another happy note, we're home again from Montreal, having experienced the many aspects of a huge film festival, filled with movies from all over the world on a myriad of subjects. I'm happy to report that "Indestructible" received a fantastic review that appeared in Variety and is reprinted below for your enjoyment.

Montreal World Film Fest

Indestructible

(Docu)

By EDDIE COCKRELL

An ALS Film Fund production. (International sales: ALS Film Fund, Winston Salem, North Carolina.) Produced by Ben Byer, Rebeccah Rush. Co-producer, Roko Belic. Directed, written by Ben Byer.

With: Ben Byer, Steven Byer, Barbara Byer, Rebeccah Rush, Oliver Sacks, Josh Byer.

An intimate, lacerating, absorbing visual diary of the three-year onset of terminal disease Amyotrophic Lateral Sclerosis (ALS) in aspiring filmmaker Ben Byer, "Indestructible" is an immersive, edifying journey of acceptance, setback and strength. Winner of the Maverick Spirit docu award at the 2007 Cinequest fest, the work will resonate beyond fests to ALS sufferers and their circles, with tube exposure and disc sales the obvious path to them.

Commonly known as Lou Gehrig's Disease, after the ballplayer who was among the first known to have succumbed, ALS is a progressive neurodegenerative condition for which there is no cure. It's "brought science to its knees," says one prominent medico marshaled among the requisite talking heads, while another calls it simply "the Grim Reaper." Nerve cells in the central nervous system stop sending messages to the brain, muscles atrophy, movement and speech become impossible -- all in three to five years. Physicist Stephen Hawking is a very rare exception to this timetable, vivid evidence that in the majority of cases, mental faculties remain preserved.

Diagnosed in 2002 at 31, happy-go-lucky Chicagoan Byer is separated from a wife who genially calls him "a freak," but he enjoys a loving relationship with young son John. Year one finds him wisecracking about having more time to watch TV and zig-zagging around the country to interview experts and fellow sufferers, including "Awakenings" author Dr. Oliver Sacks and a woman cared for by her family in Greece.

Year two brings concerted efforts to fight the disease. Byer and his father, Steven -- who confesses, "I don't know muscles from dog food" -- become involved with a Chinese herbal remedy. They fly to China and interview the inventor.

By 2005, Byer is still determined, but clearly deteriorating. He travels to Jerusalem to explore what "Judaism has to offer me" and climb Masada with burly brother Josh. A poignant coda flashes back to Byer's vid diary from years ago, where he expresses a sincere wish to become a helmer and see his work on the bigscreen.

Clearly the work of a man with much to say and little time in which to say it, the pic, punctuated by a vicious argument among his fiercely supportive family members, thrums with urgency, passion and a natural humor much deeper than the unpredictable laughing (and crying) jags symptomatic of the monstrous disease.

Tech credits are fine, particular given the disparate lineage of the material and the timeframe of the production. Lenser and co-producer Roko Belic directed 1999 indie sensation "Genghis Blues." Now in a wheelchair with no remaining arm movement and severely slurred speech, Byer remains inexterminable, and was on hand for most of the Montreal fest at which the pic screened.

Camera (color, DV), Roko Belic; editor, Tim Baron; music, Brendan Canty; associate producer, Baron. Reviewed at Montreal World Film Festival (Documentaries of the World), Sept. 1, 2007. (In Cinequest Film Festival, San Jose.) Running time: 118 MIN.

Variety is striving to present the most thorough review database. To report inaccuracies in review credits, please click here. We do not currently list below-the-line credits, although we hope to include them in the future. Please note we may not respond to every suggestion. Your assistance is appreciated.

BITTER WINDS

2007-09-01T17:44:00.001-05:00

BURNT:
We’re 3 sisters. Sandra, Eleanor, Barbara. In so many ways, Sandy is also my mother, daughter, and most of all, my most wonderful of friends. Last Thursday, Sandy became a casualty of the fierce wind that wreaked havoc on Chicago, hurled her against a wrought iron fence, then pitched her to the ground, wracking her brain into a coma. She’s in the ICU at Northwestern Hospital where I’ve watched her sleep and breathe, tubes everywhere. After four days, she opened her eyes for an instant. On the fifth, some of the tubes were removed. Recovery is slow. The challenge, for those of us who watch, is patience as we move in and out of our lives while Sandy struggles to regain what she’s lost.

CHOCOLATE:
Yesterday, I flew to Montreal to celebrate the international debut of “INDESTRUCTIBLE”, and cheer Ben’s success with family and friends joining us for this great event with Sandy in my heart. For day by day commentary, go to Ben’s blog at http://indestructiblefilm.com/blog/

HUMANITY:
Eleanor wrote this letter to Kevin Dutton, the remarkable man who saw Sandy fall, rescued her, called the ambulance, contacted the family.

“Thank you for being an incredible person and saving my sister, Sandy Wallman. If you hadn't been at the right place at the right time, Sandy wouldn't be here today. Sandy is a woman who has remarkable courage and strength and will fight hard to regain her health. She has made the world a better place through love, art, children and grandchildren, as well as her curiosity and tenacity. With the chance you have given her, excellent medical care, and the love and support surrounding Sandy, we hope and pray that she'll continue to improve and begin sharing her life with her family, friends and the world, once again. From the bottom of my heart, I thank you for making this possible.”

Kevin answered:
“Thank you for those words you wrote. I can't put into words how humbled I am to have found myself a part of such caring, wonderful people. Your sister must truly be a special woman; even in sickness, it seems, she is bringing love into others lives and for that I am thankful. I can't explain how, but even in those few minutes I was able to spend with your sister I could sense the kind of person that you all know her to be. As much as I was able to keep her calm and relaxed, I felt like she was doing the same for me. I will keep all of you in my prayers and try to share the compassion with others that you have all shared with me.”

INDESTRUCTIBLE FEATURED ON TV TONIGHT!

2007-08-20T13:40:00.001-05:00

Monday, August 20th, Indestructible will be featured on Chicago Tonight on Channel 11, WTTW from 7 - 8 p.m. with an interview from Producer Rebeccah Rush.

Excuses, Excuses

2007-08-20T11:45:00.001-05:00

I’ve started about five postings and finished none of them. Now, of course, I feel guilty for not being more productive, focused, determined. This morning Steve saw the beginnings of a piece about marriage on my desk while I was out for my morning walk and said, “That’s depressing and morbid.” To which I said, “What are you doing reading my stuff before it’s ready anyway.” I think he was responding to the comment at the end that while I never considered divorce, homicide had momentarily entered my mind at one time or another. Overly sensitive, don’t you think?

I began another piece about why some children are resilient despite loss and heartache, but I wandered. Then there’s another one about self esteem and how to bolster it. Why mistakes are a good thing. I seem to excel at starts and then drift. Then become agitated and annoyed with myself. Then I call my daughter Sarah. “I’m done. Dried up. Finished. I’m going to sit on the beach and read romance novels for the rest of my life.” Scream.

Here’s my schedule for the past few weeks. No complaints, just excuses for myself. After I returned from the Iowa Summer Writing Festival on July 14, I drove into Chicago for a family and friend gathering for three days, followed by a weekend caring for my granddaughter Zoe, followed by helping my son care for his two daughters for a week, followed by a visit from friends in Chicago, followed by a drive to North Carolina and back to deliver my grandson John to his Aunt Rebeccah, followed by another weekend in Chicago. And here I am, leaving for Connecticut in two days to visit our son Matt and his family at their new home and help them get settled. When I return, I’ve got one day to repack before leaving for Montreal to celebrate “Indestructible” being launched into the international film world.

So there you have it. Thanks for your patience. And friendship. I’ll do my best to finish some of these starts as soon as my travel slows down but with four trips already planned for this fall, I don’t see that happening any time soon. Instead, look for some of my earlier Bedtime Stories to make an appearance. I hope you enjoy them.

Montreal World Film Festival August 2007!

2007-08-02T14:02:00.001-05:00

Montreal World Film Festival
August 2007

Dear Friends,

After four years, five hundred hours of footage, thousands of hours of work and your unwavering support, Indestructible will be shown at the world's largest film festival, Montreal World Film Festival, August 23 - September 3, 2007, a premiere event on par with any other.

400 films, 70 countries, 500,000 audience members over 11 days in beautiful Montreal... it's Cannes without the jet lag. The road has been long, winding and treacherous. I'm a bit surprised that we made it. But our goal has been clear. To create change.

Despite the best efforts of some very gifted, dedicated and passionate people, there is not one effective treatment for ALS. Not one therapy to stop the paralysis to my hands, legs and diaphragm. With the power to do so many incredible things in the world, why can't we do this? I don't have the answer to that question. I'm just a filmmaker. But I do know that five years ago I was given a 10 percent chance of living this long. If I can beat those odds and mark the five-year anniversary of my diagnosis in Montreal, there's no limit to what is possible.

I dare to dream of the day when I can move freely. That may never happen, but I guarantee one day it will for someone suffering from ALS. And when that day comes we can all smile. Smile because we we were part of something great that had never been done before. And in our own little way helped move this thing forward. Thank you for your support. We need your help to finish the job.

Ben Byer

Donations Appreciated
http://www.indestructiblefilm.com/
alsfilm@gmail.com
phone: 312-848-5919

Reprinted with permission from Ben Byer

Good Night

2007-07-27T00:02:00.001-05:00

“The last good night's sleep you’ll have is the night before your first child is born.” I laughed at the woman who told me that. I was eight months pregnant at the time with our first child and thought she was daft. What did she know anyway? Her three boys were teenagers. One had just gotten his driver’s license. Of course she was freaked. When her youngest left for college, I was certain she’d sleep soundly once again. However, my plan to confirm that belief never materialized. We moved back to Chicago and lost touch with each other. Besides, if we had stayed connected, she'd have had the last laugh on me. I haven’t had a really solid, devil may care, snooze until 11 in the morning sleep for the last forty years. Any hope of regaining such a night was abandoned long ago.

“Before I had children, no one told me how completely absorbed I’d become in my children’s lives,” a friend told me as we talked about our children, past dreams and unrealized expectations. “You’re only as happy as your unhappiest child.”

I had to agree. The odds that all of our children will be in a great place, or even a good place, at the same time are 1000 to 1. Not that either of us would change anything. We love our children and grandchildren, the texture of our lives, the chaos and the tumult. Most days, she paints, I write. But if the phone rings and we hear heartache and struggle at the other end, it’s hard to focus on the work when all we really want to do is drop everything and rescue our child. We listen, offer advice, hang up, worry, consider packing a suitcase and catching the next flight, reject that idea, search for a cheerful gift on the internet, drink another cup of coffee, then call back to see if she, or he, feels any better.

I’m sure there are those who can snap their cell phone shut and get back to work. I’m just not one of them. Neither is my friend. The aftermath of those miserable moments is that she stares at the canvas and I turn off my laptop. What’s the point? We just wish that years ago we knew, on the deepest level, that we’d never return to the carefree place that existed the night before our first child was born. That was before and this is after and there’s no magical return ticket available.

Day by Day

2007-07-04T08:36:00.001-05:00

Some days. . .

Black clouds swarm above my head. The weight of ALS bears down with a force so huge it takes my breath away. I have to wrench myself free, force myself to do something, anything, that will let in the fresh air. I’ve become difficult, I know, when I’m terrified and want only to stay in bed, under the covers and sleep forever.

But on other days. . .

I let optimism rule. I believe we will overcome these terrible circumstances. I project into the future and imagine Ben physically vibrant the way he was years ago when I drove him to the airport for his third year as a college exchange student in Paris, France. He hoisted a huge duffel over his shoulder as if it weighed a few pounds, kissed my cheek and was gone. When we visited him four months later, he’d already made dozens of friends who called out ‘Binyamin’ as they waved him into their lives. Ben lived in an apartment, a boat, then someone’s loft, while he studied Decontructionism, a difficult philosophy to comprehend in English, let alone, French.
He traveled throughout Europe that summer, visited friends from the states in each country, slept on the floors of their rented rooms. Ben returned in September, packed a few belongings into a pickup truck and drove to California to film, act and write. My wish for him to complete his degree at Indiana University vanished, replaced by the hope he wouldn’t lose his way in the West Coast jungle. I needn’t have worried.
In the early morning light, I soothe the ache with childhood memories of Ben, our independent, resilient little guy, who always found his way home without bread crumbs or pebbles in his pockets. Baseball season brought Little League tryouts. Ben practiced in the backyard for weeks before the big day. Having seen his wild throws and fumbled catches at more than a few softball games, I feared he wouldn’t make the team but said nothing, hoping for a miracle as we drove to the field. Tension mounted as parents vacated the premises until noon. Prepared for a rough afternoon, I returned, shocked to find Ben part of The Optimist team, managed by two brothers who wisely valued heart above skill.
When I look at Ben now, he’s still all heart. His spirit and drive pull me from under the covers. He’s the same strong, self assured human being who made the team, traveled the distance, proved his mettle. He’s a brilliant filmmaker, a wise guy, a funny man, a sensitive soul. Who else but such a person could construct a magnificent life from so much anguish and create a legacy of the magnitude of Indestructible. More than a thousand people gave Ben a standing ovation at the Cinequest Film Festival, in awe of his contribution. Ben, beaming in his wheelchair, reminded me of a favorite quotation by Thomas Edison. “Everything comes to him who hustles while he waits.”

Postscript: I've been swamped preparing for a writer's workshop in Iowa. This article is a reprint from the Indestructible Newsletter Website that appeared in May.
I'll be back soon.
Barb

A Few Words About My Dad

2007-06-16T18:25:00.001-05:00

Ben Sokolec, Spring 1980

At a French coffee shop for breakfast during a recent trip to New York, Steve and I sat across from a father and his ten year old son. Dad ate his omelet while working his Blackberry. The boy concentrated on his laptop game while he nibbled a slice of toast. Neither spoke. The check came, the father paid and they left. The boy held the laptop open, still working the keys as they climbed into the car.

For many years, my Dad, Ben Sokolec, sold wholesale meat to local butcher shops and spent more time than he cared to at the stockyards. His days began at five in the morning, by two his workday ended, then he’d play a round of golf and by the time I got home from school, he’d be napping on the sofa, listening to the radio. I’d nestle alongside him in what I remember as a safety zone. We didn’t say much, but the connection was there. He’d ask about my day, my friends. Mostly we’d just listen to an afternoon baseball game or the Jack Benny show. Then I’d do my homework, we’d have dinner, maybe take a walk. With television came the Friday night fights and Milton Berle.

Dads are supposed to hold expectations for the child, encourage high grades in school, success in business, excellence in sports. My Dad didn’t emphasize those goals, probably because he didn’t have much ambition himself. He preferred to focus on honesty and integrity, telling the truth and not using foul language. He was a tall, thin man who rarely, if ever, lost his temper or judged others harshly. Ben played silly games with his grandchildren, imitating puppies, stretching his arm, stealing a nose. He had a twinkle and the kind of humor that made listeners groan. If he had any lost dreams, he never shared them with me.

Ben was a man of few words:
How to play golf. “Keep your eye on the ball, your head down and follow through.”
How to drive a car. “Drive.” We were parked in an empty parking lot.
How to get a date. “Tell the boy he’s handsome, smart and strong.
How to dance. “I’ll lead, you follow.”

My Dad died sixteen years ago, a victim of Alzheimer’s Disease. He disappeared from our lives over ten years, vanishing into a quiet, desperate end.

Every spring, when the weather warms up, I think about pulling out my clubs and playing a round of golf, to feel close to him again. I wonder if, years from now, that little boy will feel the same way about a Blackberry.

Magic

2007-06-14T10:59:00.001-05:00

Want a little magic in your life? Try Reiki (pronounced ray-key). Until last week, I knew very little about this healing system, other than it existed. Then my sister, Sandy Wallman, attended a workshop and came back raving about the experience. I had to try it for myself and am very glad I did.

Reiki emerged from the Tibetan culture more than 2500 years ago. This ancient healing technique was discovered by Dr. Mikao Usui at the end of the nineteenth century and has been passed down to many Reiki Masters, one of whom is Bernadette Doran, who lives in Chicago and offers workshops and trainings in her home. In just a few hours, she transformed me from a skeptic to an enthusiast.

But what is it? A physical, mental, spiritual and emotional healing system that channels energy, bringing with it balance and harmony. Every living thing, including plants and animals, contains its own personal energy. Once a person is attuned by a Reiki Master, the energy flow from the cosmos increases and can be used to heal herself and others in a gentle, natural and surprisingly simple way.

Okay, okay. I know this sounds hokey. But I’ve been giving myself and others in the family treatments for nearly two weeks, and while I’ve absolutely no apparent control over any of it, something is definitely occuring. My sleep has improved, my energy level increased, my cataract has cleared a bit. When I hold my hands two inches apart, I can feel the heat. I’m more relaxed, less frantic.

And then there’s my dog, Emma, with arthritic shoulders who takes forever to walk across the street. When I gave her a treatment, she snuggled up closer, rolled over on her back, licked me profusely, then followed me around for the rest of the day. Since then, she sits at my feet with a soulful look until I hold her limbs.

The other night, I babysat with Zoe, my four year old granddaughter. After her bath and story, she was wired. When I asked if she’d like a Reiki treatment she said sure, even though she’d no idea what I was talking about. Zoe stretched out on her back and closed her eyes as instructed. After I placed my hands on her head, the child took a huge breath and went limp. Ten minutes later she said, “Night, grandma,” gave me a kiss and went to sleep.

I’m something of a workshop junkie, having taken a slew of programs: Pathways, Fully Embodied Woman, Woman’s Circle, Journey into the Creative Soul. I’ve co-created and facilitated Moon Lodge for Moms. All these experiences have been magical in many ways.

But Reiki really is magic.

Surfacing

2007-05-29T22:00:00.001-05:00

When the children were very young and my days were filled with diapers and car pools, school conferences and laundry, I pined for the free time just around the corner when I’d have a few hours each day to myself. I imagined writing great prose, getting published, doing book tours. Sometimes, at midnight, I’d get a few lines written that made no sense the following day. Most of the time, I scrambled to make space for my creativity that I believed lurked just below the surface, if only I could reach it.

A neighbor was kind enough to loan me her porch once, where I could store paper and a typewriter and have some distance from the household chaos. One afternoon, I’d written half a page when I heard Ben teasing Sarah on the front lawn. I called and asked the housekeeper to put Ben on the phone.
“Stop driving your sister nuts.” I scolded.
“Where are you?” Ben’s voice held amazement.
“Everywhere!” I said and hung up.
Ben wandered down the driveway, searched the sidewalk, street, sky for some semblance of his mother. Watching him became far more interesting than whatever I was writing. Ten minutes later Josh and Matt scampered home from school. I threw the page in the wastebasket.

My children are grown, into their own lives with family and careers. I’ve time, finally, to write my days away without distraction. I can turn off the phone and the internet. I can approach my writing like a full time job. I can schedule eight hours a day or ten or twelve if I want to on my novel. I can write at six in the morning or four in the afternoon. Sometimes I do exactly that. But what surprises me is how often I don’t. Exploring that nuance has been revealing.

Sure, I want to finish my novel. This Burnt Chocolate blog is a more satisfying experience than I ever imagined. Topics like why some kids are resilient while others wither fascinate me. The satisfaction of a finished piece remains a thrill. But if Rebeccah calls, or Ben visits, or Zoe has a dance recital, I’ll leave a page mid sentence. In the past, I’d chastise myself for being so easily distracted, so uncommitted to my writing. Where was my resolve, my focus? With that chant in the background, it was hard to enjoy whatever co-opted my writing in the first place. The result was diminished pleasure in all directions.

After years of tussling with myself, I’m finally clear. I’m pulled away because I want to be pulled into the lives of my children. Family takes first place in any contest I’ve ever held. Writing runs a close second. A simple realization, perhaps, considering my history, but supremely worthwhile. Lately, I have more fun playing with a grandchild, planning a holiday meal or crafting a scene on the page. Days feel longer and fuller. I’ve fewer regrets. I’m living more in the moment with a greater sense of appreciation and acceptance for what I’ve created.

Would I love to write and publish a great novel? Absolutely. Now that I’ve got my priorities straight, that goal seems more possible than ever.

Things my mother told me.

2007-05-11T19:58:00.001-05:00

Barbara and Florence, Summer 1995

Never live with a man before you’re married.
Nice girls don’t live alone in their own apartment.
Get a teaching degree so you can support yourself if you need to.
Knees are ugly. Skirts and slacks should cover them.
Stick with wool, silk and cotton. Fine fabrics last forever.
Always send a thank you card.
Never swear.
Don’t give your children everything. They need something to wish and work for.
It’s as easy to love a rich man as a poor man.
Save everything. You never know when it will come in handy.
Marriage is hard work.
Spend the money you have, not what you expect to receive.
Don’t be the last one to leave a party.

I’ve broken most of those rules throughout my life. Those I didn’t break, my children have. At this stage of my life, I think Florence had the right idea about most things, especially the knee part. She rarely complained, even while she cared for my father as he lost his mind to Alzheimer’s. But her true legacy to me is the way she chose to die, eleven years ago, a month after her 87th birthday.

Ovarian cancer. The surgery was successful. No trace of cancer remained. Florence left the hospital in good spirits, determined to recover her remarkable energy. But instead of gaining strength, she slipped a little each day. Anti-depressants, antibiotics, therapeutic intervention had no effect. In spite of her resolve, she weakened until she was unable to get out of bed, eat, or move except to lift one finger to pull at the feeding tube threaded through her nose. When asked if she understood she’d die if the tube were removed, she smiled for the first time in days. To live a compromised life to her was no life at all.

Two weeks later, she died from lack of food and water, a painless, courageous death.

At 5 foot 4 inches, Florence considered herself tall, which I suppose was true for her generation. She loved her children and grandchildren, volunteered her time, worked as a bookkeeper. She knew what to do when someone died, had a nervous breakdown, or needed surgery. She could knit and sew, create exquisite needlepoint chair covers, bake delicious strudel. She kept a clean home, was an adequate cook and had a modest sense of humor. Most importantly, she loved me unconditionally, which is all anyone can ever hope for in a mother.

Ah, the Life of a Grandparent

2007-04-25T20:21:00.001-05:00

Grandparenthood has become a more complicated business today than it was in the past. The last of mine died before my tenth birthday, leaving my parents to fend for themselves in their early forties. Memory of those four strangers has left me with momentary glimpses and a handful of photographs. My first french fry, spinning on a stool at a coffee shop, bulging veins, a scratchy beard, a spongy lap. My parents, on the other hand, lived a lot longer. They participated in their grandchildren’s weddings and saw three great grandchildren become teenagers. Why didn’t Erikson fully explore this phase of human development? I suspect he was baffled by the prospect as much as I am. Whatever fantasies I had about the idyllic life as a grandparent have been supplanted by the reality that it’s a complex, challenging experience.

I currently juggle five different family dynamics with eight grandchildren (soon to be nine) all of whom present a potpourri of personalities, perspectives and experiences with an exponential factor of 200 variables in rules, expectations and discipline. And I thought these would be the golden years.

Relationships between parents and children continue to evolve far into adulthood. Just because a thirty year old has a baby doesn’t mean that any difficulties he had with his parents disappear. In fact the opposite often occurs as childhood issues are revisited as the baby matures.

Daughters- and sons-in-law create additional complications because they’ve got their own family inheritance to deal with. Partners have to merge their experiences into their parenting with very little awareness of each other’s early history. Since grandparents also know only one side of the story, they need to respect and appreciate differing viewpoints while the young family forges its own path.

Sometimes grandchildren arrive in the middle of a catastrophe. Zoe was born the same week her Uncle Ben’s ALS diagnosis became final. I was fortunate to be present for her birth, but too numb to appreciate the gift. My heart closed up, afraid to risk the embrace of another baby. Zoe spent this past weekend alone with us and for the first time in nearly five years, I felt powerfully connected to this energetic, intelligent, creative soul.

Because isn’t that the essence of grandparenting? Being connected to the future through the generation that carries our essence and light? I love watching my children parent their children as they relive experiences they most enjoyed, develop their own parenting style, and teach their children to embrace values of integrity and responsibility.

At the same time, I’m a bit jealous of my children. After all, they enjoyed their grandparents' influence long into their adulthood and have a fine grasp of that relationship, while I’m still threading my way through the labyrinth. If it's true that childhood experiences guide our parenting expertise for better or worse, it may also be true that our relationship with our grandparents provides the foundation for this final relationship. Nevertheless, I trust I’ll find my way.

Terrific or Terrible Toddlerhood

2007-04-20T00:05:00.001-05:00

Imagine life as a two or three year old. Your world view is eye level with table tops and adult knees. No one explains the rules until you make a mistake and then they expect you to remember it the next time. Your fingers drop spoons, spill juice and can't pull on a sock. When you speak, no one understands except your parents and even they often miss the point. Asking for a cookie can become downright aggravating. You ‘toddle’ when you walk on unsteady legs making skinned knees a daily occurrence. On top of that, you have to remember to say ‘potty’ about ten times a day or you wet your pants. So it’s not surprising that you find creative ways to have your needs met like the little boy in this next story.

NIBBLES

Nothing prepared me for life as the pregnant mother of a toddler. Oblivious to the humiliation ahead, I parked our station wagon in front of Hull House on Belmont Avenue in Chicago, hopeful the tot-lot program proved worth the effort. By the time I pulled Matt from the car seat, I was winded. Mounds of snow blocked the sidewalk. I grasped his hand in mine as we inched our way towards the front door.

“Doesn’t the snow look like frosting?” Drifts covered the gothic roof spires. Matt didn’t answer as he tracked a flake with his tongue.

Inside, the entryway smelled like burnt toast.

“It’s out of order.” A scrawny woman sprawled on a sofa pointed to the elevator, sniffed and flipped open a newspaper. “Stairs’re over there. Four flights.”

I should have followed my instincts and gone home. But no, I had parked and fed the meter. Playtime was important for Matt. Who knew how long we’d be stranded inside after the baby was born.

On the first landing, Matthew reversed direction and tried to slide down the banister. I hoisted him onto my hip and continued the climb. We reached the second floor dripping from the heat and lack of oxygen in the narrow stairwell. I stripped off our coats and rolled them into a bundle. Matt’s hair was plastered to his scalp, his cheeks flushed.

“This’ll be fun. Promise.” Could there have been a more inconvenient place for a children’s play group to meet? “Just a little further.”

We pulled each other up the last flight and entered the remains of a ballroom. Parquet flooring splintered underfoot, dirty white paint flaked off the walls. Huge grimy windows provided the final touch of gloom.

A dozen children sprinkled among tricycles, blocks, and toys jostled each other. I dropped into a folding chair and helped Matt pull off his boots.

“Go play,” I sputtered, wheezing.

Matt tottered into the morass. When I finally took a deep breath, the room smelled like the monkey house at Lincoln Park Zoo. Not one face looked familiar. Toddlers coughed and sneezed. Did the paint chips that littered the floor have lead in them?

Before I could find a water fountain or open a book, a shriek shattered the room. The kind of scream reserved for lions and tigers. My boots left puddles as I charged into the chaos, worried that Matt was hurt, relieved when I saw him steady the handle of a Big Wheel Bike and climb onto the seat.

The other mothers had formed a protective shield around the victim, kissing and soothing the ‘good’ child, who, between sobs, pointed at Matt. I avoided eye contact with anyone and focused on the victim’s hand. A dental impression of twelve small teeth encircled swollen blue flesh. I tasted fermented orange juice.

“I’m so sorry. That’s horrible. It’s okay, I think.” No blood, thank god. I whipped around, gripped Matt under my arm and hustled towards the stairwell. “How could you bite that child? You’re a bad boy. You hurt him. Did you hear him scream? That was a bad thing to do. We’re never coming back here!”

Someone behind me said, “Good!” but I didn’t look back. In two strides we were out the door. Matt hung like a dishrag while I railed at him from the fourth to the first floor. “Biting is bad. You can bite food – bite a toy – but not a person, not a little boy. Ask when you want something. NO BITE!”

I stuffed Matt back into his snowsuit, tied the scarf too tight, slammed boots onto his feet.

The woman on the sofa grinned. “That was quick.”

Matt’s feet stumbled and flew as we marched to the car. Within minutes he was strapped into his car seat while I strangled the steering wheel. Snow covered the windows, transforming the car into a cocoon. I turned on the motor, hoping the hum and vibration would soothe me.

How many snarls did a bite deserve? True, Matt lost the big wheel. We left. He didn’t get to play with the other children. But did he understand this could not happen ever again? When I turned around to scold Matt one more time, he was asleep.

Tales From the Trenches

2007-04-09T22:56:00.001-05:00

April is Child Abuse Prevention month. When I worked at the Family Resource Center of Iowa County in Wisconsin, we tied blue ribbons on the tree in front of the county court house, one for each reported case of child abuse or neglect. The last year I was there, we had to cut over 200 strips. Where were my allegiances as I attached bows to the branches? With both the children and their over-stressed parents.

I haven’t forgotten those moments of my early motherhood, feeling overwhelmed and exhausted when too many responsibilities and not enough support pushed me to the brink. What kept me from stepping over the line? I was lucky enough to be born into a family with competent parenting skills but realized early on that my instincts had limitations. I also recognized that in spite of my teaching experience, I knew very little about how best to parent my own children.

I read dozens of child development books, discussed options with other parents in support groups, and sought counseling from teachers and friends. I stopped worrying about what everyone else thought about my parenting skills or my children and focused on developing good coping mechanisms. I learned how to set limits and establish appropriate consequences. I took time outs for myself, asked for support from family and friends, gave myself days off and made my expectations clear. Most importantly, I developed a set of responses that I could implement before I reached code blue. Because no matter how challenging a child’s behavior might be, it’s the parent who is ultimately responsible for what transpires and for the quality of the relationship that evolves.

During the next few weeks, I'll be posting stories like this one from my early years as a Mom.

Tyranny of a Toddler

By the time Matt was a year old, I’d forgotten the sleep deprivation, labor pains and nursing fiasco to the point that a second baby seemed like a good idea. I was getting at least six hours sleep a night and we’d reached the golden moment in childhood before toddlerhood hit full throttle. Not that I understood or could verbalize any of that. At the time, I operated under the assumption that a two year stretch between babies was a good idea and had no idea how terrifying toddlerhood could become.

On a steamy spring afternoon, a month before my due date, we rambled off to the local Chinese Restaurant, Rocky's Hong Kong. Matt dozed in his stroller. We rolled right up to the table. I squeezed my ample body into one side of the booth, perspiration dappling my forehead. Matt climbed into the toddler chair next to his Dad. We ordered our favorite plate lunch special with a vegetable fried rice side for the three of us.

Matt played with the packets of sugar and the salt shaker, sprinkled the table, kicked the red plastic booth. I caught the soy sauce jar before it sprayed brown dots on his red, white and blue striped shirt. He'd shimmied half-way under the table when the waitress placed our meal on the table. Matt leaped back into his chair and grabbed the platter. “Mine!” he proclaimed.

I pried his chubby fingers loose, then slid the dish of egg roll and chow mein out of his reach. Gravy sloshed onto the table. Matt knocked over the sugar bowl and banged his fist against the wall. A dollop of rice plopped into Steve’s lap. A water glass tipped. Steve leaped from the table and into the back of another customer. I wriggled out of my seat and scooped Matt under my arm.

He thrashed against my chest and screamed “Mine!” as I hobbled past the other customers. His legs kicked my thighs. My ears burned fuchsia. I gritted my teeth as I dragged both of us outside. Matt was berserk and I was two nanoseconds behind him. He slipped to the pavement where he flung himself against the cement walk and wailed. When the monster stopped moving, I thought the worst was over. Perhaps the egg roll was still warm. Wrong again. Crazy baby resumed his hysteria and shrieked as if he was being beaten.

My neck prickled as I stared at nothing over the heads of strangers strolling past, clucking their tongues and twisting their necks, grimaces and smiles fastened to their faces. My dress stuck to my back. I folded my arms across my chest and shifted my balance. Wild boy simmered to a whimper, then hiccups. I braced myself against the concrete wall in case it was another intermission.

“Are you finished?” I was all business. Speckles of dirt and sweat smeared his face, palms and knees. Matt held up his arms, sighed and sputtered.

I hoisted him onto my left hipbone, bouncing his bottom firmly into position, my arm strangling his waist as I marched to the bathroom. His legs hung limp like a rag doll. The mantra in my head blasted, “I do love this baby. He’s not a devil child.”

The sight of my face in the mirror was more than a little frightening. I splashed soapy water on Matt’s cheeks and arms. We walked back to the table together holding hands. Steve, slumped in the booth, offered me a sympathetic glance as he helped Matt settle in his booster seat.

“You’re up next.” I crammed myself into the booth and polished off a glass of water.

Matthew touched the edge of our cold lunch platter with one finger. “Mine?” He sounded hopeful.

And even though the sight of the congealed mass of chicken, noodles and sauce had obliterated my appetite, I said “No, we’re going to share,” and waited for Matt’s response.

Happy 65th Birthday to Steve!

2007-04-03T11:39:00.001-05:00

We met when he was nineteen, forty six years ago, on a cold November evening. He was cute, a little crazy like me, and someone who expected a lot from life. Sometimes it seems like we met a zillion years ago, other times it feels like yesterday. The journey together has been rocky, amazing, exhausting, frantic, fun, devastating, and exhilarating. I suppose anyone can say that about their life because no one gets a sweet ride. Everyone experiences bumps. It’s the size of the bumps, the texture, the smell, the density, the shape that differs. We’ve celebrated nearly 550 birthdays together, if you count all of our children, their spouses and our grandchildren. And we’ve got dozens ahead of us. I no longer expect or entertain the thought that the last of our life together will be a slow meandering on paved roads. What I do know is that whatever lies ahead, however steep the curves, I’ve got a great driving partner by my side.

Great Review of 'Indestructible'

2007-04-03T08:49:00.001-05:00

So next up was definitely the most fearless and personal (and also the best) documentary of the festival. "Indestructible" is the story of Ben Byer, a struggling actor/filmmaker and an energetic, reasonably athletic 31 year old father of a beautiful son. And then he was struck with amyotrophic lateral sclerosis, aka ALS, aka Lou Gehrig's disease. So he turns the camera on himself, and over three years, with the help of his family and friends, documents his deterioration. The result (and by the way, he's still alive, was at the screening and could still be filming and editing today if they didn't decide they needed to just finish it and get it out there) is amazing. His journey takes him to China for an herbal cure, which is semi-successful (at least it seems to slow the progression). He stays in China for an experimental spinal operation that ranges from useless to dangerous. Back home to recuperate he realizes that the operation was a failure, and documents his daily home life--ranging from hilarious (most of the time with his adorable son) to heartbreaking (a family fight which to me is the key to the film). Ultimately his journey takes him back to his Jewish roots and a trip to Israel to find religious meaning, which ends it on a nicely poignant note. I just have to say one more thing about the family fight. It wasn't anyone's best personal moment, but without it everyone in the movie is a saint and no one's a real person. This movie stretched my emotional limits in only two hours, I can't imagine how everyone involved suffered through this for 2 years (at the time, 5 years now). And watching someone who can barely stand up get up and storm/stagger out of a room, only to stagger back just to tell everyone off is a truly extraordinary sight. Oh yeah, and he owned a doggy and keep watching through the credits--there's a bonus doggy scene at the end.

This posting was taken from Jason Watches Movies. Read this and other of his reviews at http://jasonwatchesmovies.blogspot.com

2007-03-27T19:39:00.003-06:00

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.

“Yeah.”

“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.

2007-03-22T20:04:00.001-06:00

CHOCOLATE
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.

BURNT
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.

2007-03-13T23:53:00.001-06:00

INDESTRUCTIBLE WINS BEST DOCUMENTARY AT CINEQUEST FILM FESTIVAL!
CHOCOLATE SUPREME!
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.)

BURNT!
JUST THREE WEEKS AGO, BEN STARTED ON A NEW MEDICATION, WHILE CONTINUING ON BUNAOGAO, THAT IMPROVED HIS SYMPTOMS EVEN AT AN INITIAL REDUCED DOSAGE. THE SAME DAY OF INDESTRUCTIBLE’S PREMIERE, WE LEARNED THE DRUG WILL NO LONGER BE AVAILABLE. PLEASE READ THE PRESS RELEASE BELOW TO LEARN SPECIFIC DETAILS OF THIS UNCONSCIONABLE ACTION. PLEASE CONTACT ANYONE YOU KNOW WHO CAN BE OF HELP TO STOP THIS CALLOUS ACTION AND GET THE DRUG INTO THE HANDS OF THOSE WHO NEED IT TODAY!

FOR IMMEDIATE RELEASE

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
bsbyer@mhtc.net
608-698-4200

INDESTRUCTIBLE WINS BEST DOCUMENTARY AT CINEQUEST!

2007-03-13T23:41:00.001-06:00

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.

WORLD PREMIERE REVIEW

2007-03-10T13:20:00.001-06:00

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

2007-03-07T12:35:00.001-06:00

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?

2007-03-06T17:37:00.001-06:00

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.

A New Twist

2007-03-01T11:24:00.001-06:00

“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.

Shattered Days

2007-02-19T21:05:00.001-06:00

In the spring of 2002, Ben was a new dad and struggling artist. If he wasn’t preparing for an audition, or rehearsing for a play, he was writing, locked up in a room for days. I blamed his thinning hair and unhealthy pallor on not enough sleep or too many cigarettes. Clues drifted into our lives disjointed, fragmented. Perhaps he was trying on a new role when his words slurred or his head moved at awkward angles when he ate. His voice roughened because he had to shout in his last play. Diminished muscles in his hands could be the result of too much writing or typing. Weight loss reflected poor eating habits. Nothing more.

I remember caring for Ben’s two year old son John one summer morning while he went to the doctor for a check up. That was the first I knew that he was having difficulty using his laptop or a pen. Auditions were not going well because his voice sounded raspy. Afterwards, we met crowded around a small table at a sandwich shop for lunch. Ben dipped his head from side to side and chewed his food as if he’d had a few beers but it wasn’t noon. The doctor’s examination was inconclusive. Tests were scheduled.

As the weeks wore on without a definite diagnosis, I dissected each symptom. Fatigue or perhaps a blood disease that could be repaired with drugs. Or simple surgery. Nothing serious. After all, Ben had been the model of excellent health, never sick a day in his life, a muscular, physical specimen. He played every sport in high school, climbed more than one mountain in college, swam, ran, hiked. He’d spent summers kayaking, canoeing, camping. He’d recover.

Fourth of July weekend, we lounged on a hill in Mineral Point, Wisconsin and watched fireworks, swam in Cox Hollow Lake, grilled bratwurst on the deck. Time passed. The symptoms grew more pronounced. I hoped for muscular sclerosis or a brain tumor and wondered about my sanity. Ben’s voice grew more ragged. Lifting a glass of water took effort. By the end of the summer, he refused to leave the neurologist’s office without a diagnosis.

The world knows ALS as Lou Gehrig’s disease, as if he’s been the only one to sink into paralysis and struggle to take a breath. He stepped up to the plate in 1939, announced to the world life as he knew it was over, then disappeared from sight. No one saw his frozen ending. We’ve moved from the Industrial Age to the IT age and still this disease confounds brilliant minds. Ask ten people and at least one has intimate knowledge and experience with ALS. A son-in-law’s grandfather, a friend’s aunt, a workshop attendant’s mother. Make no mistake. This virulent disease makes people turn away in horror but it has affected someone you know. They just don’t talk about it.

The final and irrevocable diagnosis shattered any belief I had that we’d escape catastrophe. Instead of celebrating the birth of a new granddaughter, we were plunged into a monstrous nightmare. I pulled on my hiking boots and pounded the hundred acres we lived on while my husband of forty years cleared three acres of brush in two hours. The crash of timber competed with my screams. The tractor chewed up my illusions along with branches and dried grass. The birds scattered through the hills and the sun burned my back. The beauty of that day lives on in the midst of my pain.