golden age

At times this is how I feel:

 

Put your hands on the wheel
Let the golden age begin
Let the window down
Feel the moonlight on your skin
Let the desert wind
Cool your aching head
Let the weight of the world
Drift away instead

These days I barely get by
I don't even try

It's a treacherous road
With a desolated view
There's distant lights
But here they're far and few
And the sun don't shine
Even when it's day
You gotta drive all night
Just to feel like you're ok

These days I barely get by
I don't even try

—Beck, Golden Age, from his album Sea Changes

photo by Michael Kolster

to the laborers

I've always been amused by the contention that brain work is harder than manual labor. I've never known a man to leave a desk for a muck-stick if he could avoid it.

―John Steinbeck

It is difficult to get a man to understand something, when his salary depends on his not understanding it.

―Upton Sinclair

On this Labor Day I post in honor, and in memory, of the world's laborers—children, the poor, the underpaid, the overworked, the disadvantaged, the struggling, the enslaved, the minority, the immigrant, the intellectually disabled—who assemble the products, who serve the public, who harvest the crops, who pack the meat, who forge the metals, who sew the clothes, who mine the ores and on whose backs investors in the products these laborers bring to fruition make millions, some perhaps consciously oblivious to the magnitude of their toil and the inadequacy of their take.

elmer and nicole

This morning our buddies Elmer and Nicole came by to say hello. They're back in town visiting for a few days. The first thing Elmer did, after giving Michael and I hugs, was to make a beeline toward Calvin to put his arms around our boy. It reminded me of the first time that we met the couple. We were at a mutual friend's birthday party down the street. We'd had to bring Calvin along, who might have been two years old at the time, though I can't remember if he'd been diagnosed with epilepsy yet. In any case, he was a floppy baby, small for his age but big for his developmental stage, legally blind times five, thus sporting tiny Mickey Mouse glasses, and unable to crawl, walk or utter any words—in some ways not unlike he is today.

Shortly after being introduced to us, Elmer asked to hold Calvin. His fearlessness surprised me, his utter lack of apprehension, his plain and simple delight at doing so. He cradled Calvin as if he'd done it a thousand times before. He even rocked him in his arms before nestling him up on his shoulder. Michael and I were astonished and I can remember being touched to tears. Few friends had asked to hold Calvin and none had done so with such ease and grace. Nicole joined Elmer at his side and, with one arm around him, peered lovingly into Calvin's eyes while rubbing his little back. The couple's warmth lit the room for me (I'd lived in the grip of despair for years) and for a few minutes, as they tended to our child, Michael and I were able to partake in the many birthday sweets arranged on a nearby table.

I'll never forget that moment.

A few hours ago, while sitting at our table sharing a breakfast of homemade blueberry-peach crisp with ice cream, they asked about Calvin, about his recent test for reflux. Nicole offered some ideas for alternative treatments such as apple cider vinegar and bitters before meals. Elmer, holding Calvin once more, enjoyed another brief hug before the little imp squirmed out of his lap, since, because of the seizure meds, he just can't ever seem to stay still.

The couple has recently moved to Milwaukee for Elmer's job. They'd been living in New York for two years, after having gotten married, so that Elmer could attended Columbia Business School. We miss having them close by. But every time they come into town they make an effort to stop by, either together, separately or both. They never fail to ask after Calvin and they lavish us with their affection, their vitality, their contagious optimism, their openness, their sense of humor, their love, and often entire meals brought on big platters including some seriously badass desserts that Nicole creates.

We love you Elmer and Nicole. Until next time.

tirade

So, the kid has reflux, and I had a somewhat disheartening, half-hour telephone conversation with his gastroenterologist who is prescribing yet another drug for me to give to my nine-year-old son Calvin. The drug, Omeprazole, has a decently long list of side effects and appears to help only in the short term. The drug is known to interact with one of Calvin’s seizure meds—might amplify the anticonvulsant drug blood levels and thus the side effects of said medication—the drug, as a result, when discontinued could trigger withdrawal seizures.

I asked the doctor to call Calvin’s pediatric epileptologist to find out about the specifics of these possible drug interactions. I asked her to call a functional medicine specialist to see if an alternative treatment might work such as deglycyrrhizinated licorice, aloe, apple cider vinegar or perhaps even medical marijuana. I asked her, if we end up giving him the drug she prescribed, when he would take it since it likely can’t be given at the same time as his anticonvulsant medication and must be given on an empty stomach, which given those two directives might be difficult if not impossible to achieve. It seemed like her patience was wearing thin with my list of demands, and so I said to her quite firmly:

“If you don’t have a child like Calvin—and it doesn’t matter if you treat a hundred zillion kids just like him every day—you can never know what it’s like or what he has to go through with these drugs, which is why I have to advocate and ask so many questions because he can’t tell us anything.”

After that, she took a more conciliatory tone, tried to assuage my irritation, even reiterated what I’d said about being his advocate. But when I hung up the phone I knew that my tirade might not have sunk in, but maybe—just maybe—it will make a difference in his treatment. At the very least, as my husband always tells me, I can always hope.

photo by Michael Kolster

friday faves - out of reach

Every summer when I was a kid my father hitched the trailer to the back of our olive green Suburban and set out on vacation. My mother spent days preparing food for the trip and packing essentials like towels, cooking supplies and dimes for the shower. Sometimes our destination was the Washington coast or the white hot Oregon Dunes, but one of our favorite spots to land was Sun Lakes in eastern Washington, a three-and-a-half hour drive from home.

I often brought a friend along and we passed the weary journey lying on blankets in the back of the truck playing cards and telling jokes. The drive was hot and arid, winding through desertous terrain, craggy vertical bluffs rising high above the narrow road on one side and cascading steeply down the other into a meandering green-black river. We’d reach the park in the afternoon, and as my parents set up camp my brothers and sister went to jump the cliffs and my friend and I, though we were only ten or so, were free to go off and explore a nearby lake.

Barefoot in our bathing suits, we walked on a rocky path watching hopefully and intently for snakes, our feet and ankles powdered in a fine ruddy dust. The base of the path widened and spilled out onto a small, sandy outcropping at the water’s edge, sprouting tufts of sturdy grasses and a shady poplar tree. We dipped our toes in first. The water was clear and pleasantly warm, having been bathed in the sun for weeks on end. Carefully, we slid out on the smooth, slimy moss-covered rocks, gripping with our toes and balancing ourselves with outstretched arms, as if on a tightrope. Several yards out it remained shallow. Golden-green milfoil tickled our calves as it gracefully waved just below the water’s surface, which was glassy and adorned with the sky's billowy white clouds.

Soon we were joined by a lithe little girl of about four wading on her own, her watchful parents several yards away chatting with another couple. The child slipped on the slick shallow outcropping and plopped, just barely under the water. Time stood still. She remained motionless except for her wavy blond hair undulating and mingling with the milfoil, her arms floating at her sides, her ivory skin contrasting sharply and sickeningly with the dark submerged rocks. She was almost within our reach, but we stood frozen in shock. Within seconds an adult splashed clumsily to her rescue, yanked her up by her arm and held her as she gasped and cried. My friend and I stood by utterly paralyzed and helpless.

I experience these same feelings when I watch Calvin have a seizure. He is just within my reach but there is nothing I can do to help. I can only stand by and watch from where I am, paralyzed and powerless. Only when it ends can I scoop him up, sometimes while he's still gulping for air. I just hope one day he doesn’t drown amidst the surging electric waves that rhythmically lap against his precious brain and from which I cannot rescue him.

From February 2011.

photo by Michael Kolster

remarkable boy

From November 2010.

After a day of seizures, and before what would be another sleepless night, I went upstairs to say goodnight to Calvin. He was standing in his crib, like he does most nights, waiting for me after having been put to bed by Michael. I laid him back down, ran my fingers through his thick hair, told him he’s my best boy, that I love him and goodnight. I tickle his ears, so soft, pink and springy. I remember what they were like when he was born. He was a preemie—six weeks early—and the cartilage in his ears hadn’t formed yet. They laid delicate and flaccid against his head like wilted flowers.

Sometimes I marvel at what a beautiful child my boy is. A thick, silky, auburn mass—with strawberry highlights that catch the sun—has long since replaced the curly blond locks he had as a baby. His flawlessly smooth skin covers long slender limbs and a supple round belly. Are his large eyes still indigo? I think so, just not as deep as before. Such an amazingly perfect body begs the question, “what happened to his brain?” Why couldn’t he have been born with nine fingers and nine toes instead of missing much of the white matter in his brain? What went so wrong? And like so many questions, we don’t have the answer; it just is what it is.

But what Calvin lacks he makes up for in his gentle spirit, in his dimpled smile, in his adorable giggle, in the way he lovingly touches our faces and necks and in the way he kisses our nose. He’s our one and only remarkable boy and I don't know what I'd do without him.

fifty years later

His speech wasn't long, but it was powerful, and it was meant for all of us, not just some of us. But fifty years later we have not done the work needed to wholly mend the wounds of segregation nor to overcome racism. Our nation is not yet a place in which all people are treated equally. Racism and bigotry abide, women continue to be subjugated and harassed, the poor remain poor and become poorer, gay men and women and other minorities regularly encounter discrimination and the disabled remain misunderstood and marginalized. We have missed the mark.

I think about what I want for my son Calvin and for his future, think about what any parent wants for their child. I don''t want him to be feared, misunderstood or labeled. I want him to have access to the same opportunities as other kids. I don't want him to be cast aside, forgotten, discriminated against, bullied, beaten down, resented or blamed. I don't want him to be a scapegoat, a target, a stereotype, an afterthought or a victim.

I, too, dream of a place where proper health care, a solid education, a living wage, fair and easy access to voting and a wide and unencumbered road to prosperity are the birthrights of all Americans, not just for some of us. And though his speech was recited fifty years ago—the year in which I was born—in some ways still, it's as if it had been written yesterday:

I am happy to join with you today in what will go down in history as the greatest demonstration for freedom in the history of our nation.

Five score years ago, a great American, in whose symbolic shadow we stand today, signed the Emancipation Proclamation. This momentous decree came as a great beacon of hope to millions of slaves, who had been seared in the flames of withering injustice. It came as a joyous daybreak to end the long night of their captivity. But one hundred years later, the colored America is still not free. One hundred years later, the life of the colored American is still sadly crippled by the manacle of segregation and the chains of discrimination.

One hundred years later, the colored American lives on a lonely island of poverty in the midst of a vast ocean of material prosperity. One hundred years later, the colored American is still languishing in the corners of American society and finds himself an exile in his own land. So we have come here today to dramatize a shameful condition.

In a sense we have come to our Nation's Capital to cash a check. When the architects of our great republic wrote the magnificent words of the Constitution and the Declaration of Independence, they were signing a promissory note to which every American was to fall heir.

This note was a promise that all men, yes, black men as well as white men, would be guaranteed to the inalienable rights of life liberty and the pursuit of happiness.

It is obvious today that America has defaulted on this promissory note insofar as her citizens of color are concerned. Instead of honoring this sacred obligation, America has given its colored people a bad check, a check that has come back marked "insufficient funds."

But we refuse to believe that the bank of justice is bankrupt. We refuse to believe that there are insufficient funds in the great vaults of opportunity of this nation. So we have come to cash this check, a check that will give us upon demand the riches of freedom and security of justice.

We have also come to this hallowed spot to remind America of the fierce urgency of Now. This is not time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism.

Now is the time to make real the promise of democracy.

Now it the time to rise from the dark and desolate valley of segregation to the sunlit path of racial justice.

Now it the time to lift our nation from the quicksands of racial injustice to the solid rock of brotherhood.

Now is the time to make justice a reality to all of God's children.

It would be fatal for the nation to overlook the urgency of the moment and to underestimate the determination of its colored citizens. This sweltering summer of the colored people's legitimate discontent will not pass until there is an invigorating autumn of freedom and equality. Nineteen sixty-three is not an end but a beginning. Those who hope that the colored Americans needed to blow off steam and will now be content will have a rude awakening if the nation returns to business as usual.

There will be neither rest nor tranquility in America until the colored citizen is granted his citizenship rights. The whirlwinds of revolt will continue to shake the foundations of our nation until the bright day of justice emerges.

We can never be satisfied as long as our bodies, heavy with the fatigue of travel, cannot gain lodging in the motels of the highways and the hotels of the cities.

We cannot be satisfied as long as the colored person's basic mobility is from a smaller ghetto to a larger one.

We can never be satisfied as long as our children are stripped of their selfhood and robbed of their dignity by signs stating "for white only."

We cannot be satisfied as long as a colored person in Mississippi cannot vote and a colored person in New York believes he has nothing for which to vote.

No, we are not satisfied and we will not be satisfied until justice rolls down like waters and righteousness like a mighty stream.

I am not unmindful that some of you have come here out of your trials and tribulations. Some of you have come from areas where your quest for freedom left you battered by storms of persecutions and staggered by the winds of police brutality.

You have been the veterans of creative suffering. Continue to work with the faith that unearned suffering is redemptive.

Go back to Mississippi, go back to Alabama, go back to South Carolina go back to Georgia, go back to Louisiana, go back to the slums and ghettos of our modern cities, knowing that somehow this situation can and will be changed.

Let us not wallow in the valley of despair. I say to you, my friends, we have the difficulties of today and tomorrow.

I still have a dream. It is a dream deeply rooted in the American dream.

I have a dream that one day this nation will rise up and live out the true meaning of its creed. We hold these truths to be self-evident that all men are created equal.

I have a dream that one day out in the red hills of Georgia the sons of former slaves and the sons of former slaveowners will be able to sit down together at the table of brotherhood.

I have a dream that one day even the state of Mississippi, a state sweltering with the heat of oppression, will be transformed into an oasis of freedom and justice.

I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by their character.

I have a dream today.

I have a dream that one day down in Alabama, with its vicious racists, with its governor having his lips dripping with the words of interpostion and nullification; that one day right down in Alabama little black boys and black girls will be able to join hands with little white boys and white girls as sisters and brothers.

I have a dream today.

I have a dream that one day every valley shall be engulfed, every hill shall be exalted and every mountain shall be made low, the rough places will be made plains and the crooked places will be made straight and the glory of the Lord shall be revealed and all flesh shall see it together.

This is our hope. This is the faith that I will go back to the South with. With this faith we will be able to hew out of the mountain of despair a stone of hope.

With this faith we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood.

With this faith we will be able to work together, to pray together, to struggle together, to go to jail together, to climb up for freedom together, knowing that we will be free one day.

This will be the day when all of God's children will be able to sing with new meaning "My country 'tis of thee, sweet land of liberty, of thee I sing. Land where my father's died, land of the Pilgrim's pride, from every mountainside, let freedom ring!"

And if America is to be a great nation, this must become true. So let freedom ring from the hilltops of New Hampshire. Let freedom ring from the mighty mountains of New York.

Let freedom ring from the heightening Alleghenies of Pennsylvania.

Let freedom ring from the snow-capped Rockies of Colorado.

Let freedom ring from the curvaceous slopes of California.

But not only that, let freedom ring from Stone Mountain of Georgia.

Let freedom ring from every hill and molehill of Mississippi and every mountainside.

When we let freedom ring, when we let it ring from every tenement and every hamlet, from every state and every city, we will be able to speed up that day when all of God's children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old spiritual, "Free at last, free at last. Thank God Almighty, we are free at last."

—Reverend Dr. Martin Luther King Jr., August 28, 1963

Reverend Dr. Martin Luther King Jr., at the March on Washington for Jobs and Freedom, August 28, 1963