Thursday, December 10, 2009
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.
Tuesday, July 7, 2009
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.
Saturday, January 31, 2009
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.
THANK YOU FOR YOUR SUPPORT!
TOGETHER WE WILL MAKE A DIFFERENCE!