Rambling Milestones

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

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

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

"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

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

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

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.