a page, ever-refillable, of things you simply must know...things to ponder, things to stand up & shout about, things you might want to tell everyone you know.....
this might make you cry, it might make you shout...
[[saddest note: ben byer died on july 3, 2008, his long battle with ALS finally ended. what follows was originally posted here in the winter of 2006. i leave it here to honor who he was, and always will be...]]
for a few years now, i have been keeping an eye on a heartbreaking story of love. there is a man named ben byer, who is 35, a single father, and who has als, often known as lou gehrig’s disease, a neurodegenerative disease that carries an unavoidable death sentence, usually in two to five years. ben is going on year five.
until last summer, when she had a baby of her own, ben’s sister, rebeccah rush, was ben’s round-the-clock caretaker here in chicago. in a wrenching decision, she has moved onto north carolina, and ben remains here, raising his 6-1/2-year-old john.
ben is gifted with an incredible capacity to tell his story, to put poetry to his pain. ben and rebeccah have been working for three-and-a-half years on a documentary, “indestructible,” that had its world premier at the cinequest film festival in the silicon valley on march 8.
thrillingly, their lifework brought them the “best feature documentary” award at the festival, one of 1,850 films submitted this year.
and even more thrillingly, the midwest premier is oct. 2, at the landmark century theatre in chicago. click to their website below for details.
in a recent newsletter, ben writes beautifully of parenting while his body wastes away. here, with permission, is an excerpt:
One year later, we were traveling to Oregon to visit a childhood friend of mine. After three connections and nearing 11:00 PM, my three and a half year-old was exhausted. He did not want to get up from his seat on the plane. After everyone else had exited, I was still trying to convince him that walking off the plane was the best choice for both of us. But he was upset and tired and now in a full-on wail. A stewardess said, “You need to pick him up.” The degenerative disease had weakened my arms to the point that opening a can of Spaghettios was impossible. A gallon of milk weighed three hundred pounds, and my son, in a full-on temper tantrum, was impossible to carry through an airport. A woman on the cleaning crew sensed there might be something else going on and suggested we grab a wheelchair to carry him out of the terminal.
to read more of this story of unshatterable spirit, go to their website here. and look just down below the tulips for ben’s mother’s magnificent essay. you’ll not forget it. maybe ever.
tunes i cannot stop blaring these days... just about anything afrocelts, from “cyberia” to “nevermore” to “green.” hauntingly beautiful vocals and instrumentals. my idea of honoring the north atlantic island my grandma mae called home.
get your juices boilin’...my good friend sherry, my mate at the soup kitchen stove, is a doctor at what some of us still refer to as cook county hospital, otherwise and officially now known as stroger hospital. it is the county hospital for the poorest of the poor. it’s long been said of cook county, “if you get shot, be sure to tell your ambulance driver to take you to county.” years ago i got kicked out of the place for writing stories about how nasty the conditions were up on one of the medical wards. the doctors who work there are some of the best. it is a place that breaks your heart, while it inspires. in an ugly and would-have-been-avoidable slashing of the budget, good folk there are deadly worried that the best will be lost. in part, sherry writes:
“...I am very worried that I will lose the job that I have done for over seven years but that is not my major concern. I am worried that clinics will close, hospital services will decrease substantially and thousands will be left without medical care. Some of these people will find care elsewhere, some will get better on their own and make no mistake, some will die. As I attend meeting after meeting led by hard working and dedicated people intent on fixing the budget shortfall we all saw speeding down the road years ago. I am furious. How did we let this happen? What kind of magical thinking let us believe that we would be able to continue to operate despite a predicted significant decrease in funding?...
“...But we should not abandon a population who cannot fight for itself.”
she goes on to invoke the names and the consciences of politicians from the cook country board president to senator barack obama. in closing she writes, “I am certain that this current crisis of healthcare for needy residents in Cook County is a failure with very real consequences. ”
Sherry Licht, MD
Physician Consultant
Division of General Medicine
Stroger Hospital of Cook County
sadly, in a budget letter from the medical staff of the cook county bureau of health, in february, the likely cuts were spelled out. they include: cutting by 44,000 the number of ambulatory care patient visits; cutting 5 primary care clinics, 18 doctors and 42 nurse practitioners or physician assistants from those clinics; and cutting 18 of 28 ob/gyn doctors. the numbers are sad, the reality in terms of lives put at serious risk, even sadder.
as of late may, sherry was officially laid off. she is, for now, a volunteer doctor at cook county. stay tuned as the sadness continues.
ben’s mama writes:
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 Deconstructionism, 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.
