scorn, swagger and the empathy gap

Recently, I stumbled across another in a string of hateful Facebook posts. To say it was snarky is an understatement. I grappled with how to comment, since I believe that anytime someone posts something to the site, in doing so we are inviting comments. This is what the post said:

If you can afford beer, cigarettes, new tattoos, drugs and cable TV ... then you don’t need food stamps or welfare. “Share“ this if you agree.

I considered posting my own snarky response to the heartless meme, including simply writing, “Gross.” Its callousness and the stereotypical image it conjured offended me. I felt both ashamed of and sorry for the post’s original author and its sharers, who perch themselves atop pedestals looking down on others. Have they any idea what it’s like to live in poverty? Though I felt a hankering, instead of inserting a public rant, I ended up Googling the meme and found several thoughtful commentaries on the subject that I recommend reading, one by a New York Times Op-Ed columnist, the link to which I copied and pasted into the comment box along with a second, thoughtful entry from another source.

Still, the post sent me reeling, summoning up other recent examples of bullying, bigotry and antipathy, in effect, an empathy gap, that keeps our nation from realizing its true potential, such as: the protests by some individuals and factions demanding that Central and South American refugees, many of them mothers and children trying to escape the dangers of drug cartels, simply “go back home”; last week’s 5-4 Supreme Court decision allowing certain corporations the right to refuse insurance coverage for birth control (one of the best methods to avoid unwanted pregnancies and abortions) for their female employees, ostensibly based on the proprietors’ religious beliefs; the persistent press by some diehards to ban same-sex marriage; the macho swagger of some deluded gun rights activists who wholly misinterpret the second amendment twisting it to conform to their paranoid notion of freedom and in doing so frighten and endanger innocent bystanders by gratuitously toting their phallic weapons into restaurants and stores.

Then, I considered the post again, pondering the contempt it imbued. The sick feeling it gave me reminded me of the time when my friend, her husband and I were driving through an East Bay, California neighborhood one hot summer day. From the driver’s seat, her husband made a vulgar remark about a small gathering of African American folks cooling off on a front stoop minding their own business. When I challenged his vile comment he fell silent. From the backseat I watched his neck turn red.

Mulling the Facebook post over in my mind further, I embarked on one of my silent stream of consciousness rants:

why do those who complain about people on welfare seem to ignore the billions in corporate subsidies, unfair tax breaks and loopholes that burden the struggling masses while profiting the wealthy few? why do some women still allow men to discriminate against them by sanctioning policies, by way of their vote, that govern our bodies and limit our advance in the workplace? why do some hold the poor in contempt? rhetorical: why do the owners of walmart, papa john’s, mcDonald’s, and the like, insist that raising the minimum wage will kill jobs, though evidence points to the contrary, just as their profits soar into the billions, their own salaries and bonuses reach millions, yet their employees don’t make enough to live on, in turn fostering their need for public assistance? why do people resent immigrants when this nation was built by immigrants and is stronger and richer in myriad ways because of its diversity? why do companies, even nonprofits like Goodwill whose CEOs make several hundreds of thousands per year, feel justified in paying their disabled employees mere pennies?

This afternoon I took Calvin down the street for a walk. He balked, didn’t want to go, twisted stubbornly in my grip to break free. But I insisted, even though he whined, and I kept encouraging him to forge ahead and go a little farther than he had the last time. Why? Because I want a better life for him, want him to realize his potential, and so I take the two of us out of our comfort zone to do so, and believe me, it’s not always fun. As we labored in the hot sun to the end of the block and back I was reminded of the immigrants’ perilous struggle to make a better life for themselves, of the grieving, bitter parents advocating for reasonable gun safety measures, of women standing up for their rights even as misogynists and reactionaries abuse and taunt us, bind, blame and curse us, of gay people advocating for the equality that is written plain as day in our constitution, of the poor, sometimes working two and three jobs while enduring the scorn of their fellow Americans in more ways than just nasty, contemptuous Facebook posts.

Ritchie Goins Jr. watches from the window of his parents' trailer as cinderblocks are brought in as the foundation for his grandmother's new trailer. Leetha Goins and her children Timmy, 25, Troy, 16, and grandson Will, for whom she cares, were displaced when a drunk driver swerved off the road and crashed into their trailer.  Photo, Matt Eich/Alexia Foundation

for independence day

This morning I woke up and read a poem by Langston Hughes that my friend and fellow blogger, Elizabeth Aquino posted yesterday. For me, the poem holds all of the thoughts that I have of this place we call home. His words could be no truer, no more exact, no more poignant. Today, the morning after our so-called Independence Day, I will meditate on them:

Let America be America Again

Let America be America again.
Let it be the dream it used to be.
Let it be the pioneer on the plain
Seeking a home where he himself is free.

(America never was America to me.)

Let America be the dream the dreamers dreamed—
Let it be that great strong land of love
Where never kings connive nor tyrants scheme
That any man be crushed by one above.

(It never was America to me.)

O, let my land be a land where Liberty
Is crowned with no false patriotic wreath,
But opportunity is real, and life is free,
Equality is in the air we breathe.

(There’s never been equality for me,
Nor freedom in this “homeland of the free.”)

Say, who are you that mumbles in the dark?
And who are you that draws your veil across the stars?

I am the poor white, fooled and pushed apart,
I am the Negro bearing slavery’s scars.
I am the red man driven from the land,
I am the immigrant clutching the hope I seek—
And finding only the same old stupid plan
Of dog eat dog, of mighty crush the weak.

I am the young man, full of strength and hope,
Tangled in that ancient endless chain
Of profit, power, gain, of grab the land!
Of grab the gold! Of grab the ways of satisfying need!
Of work the men! Of take the pay!
Of owning everything for one’s own greed!

I am the farmer, bondsman to the soil.
I am the worker sold to the machine.
I am the Negro, servant to you all.
I am the people, humble, hungry, mean—
Hungry yet today despite the dream.
Beaten yet today—O, Pioneers!
I am the man who never got ahead,
The poorest worker bartered through the years.

Yet I’m the one who dreamt our basic dream
In the Old World while still a serf of kings,
Who dreamt a dream so strong, so brave, so true,
That even yet its mighty daring sings
In every brick and stone, in every furrow turned
That’s made America the land it has become.
O, I’m the man who sailed those early seas
In search of what I meant to be my home—
For I’m the one who left dark Ireland’s shore,
And Poland’s plain, and England’s grassy lea,
And torn from Black Africa’s strand I came
To build a “homeland of the free.”

The free?

Who said the free?  Not me?
Surely not me?  The millions on relief today?
The millions shot down when we strike?
The millions who have nothing for our pay?
For all the dreams we’ve dreamed
And all the songs we’ve sung
And all the hopes we’ve held
And all the flags we’ve hung,
The millions who have nothing for our pay—
Except the dream that’s almost dead today.

O, let America be America again—
The land that never has been yet—
And yet must be—the land where every man is free.
The land that’s mine—the poor man’s, Indian’s, Negro’s, ME—
Who made America,
Whose sweat and blood, whose faith and pain,
Whose hand at the foundry, whose plow in the rain,
Must bring back our mighty dream again.

Sure, call me any ugly name you choose—
The steel of freedom does not stain.
From those who live like leeches on the people’s lives,
We must take back our land again,
America!

O, yes,
I say it plain,
America never was America to me,
And yet I swear this oath—
America will be!

Out of the rack and ruin of our gangster death,
The rape and rot of graft, and stealth, and lies,
We, the people, must redeem
The land, the mines, the plants, the rivers.
The mountains and the endless plain—
All, all the stretch of these great green states—
And make America again!

photo by Michael Kolster

gripes and gratitude

gripes:

stuck at home. caregiver blues. sleep deprivation. sick, snotty-nosed, stubborn son. whining. ear infection? sinus infection? five male members of the supreme court. discrimination. benzodiazepine withdrawal: massive drooling, mania, incessant finger snapping, shrieking. heart palpitations and vertigo (mine.)  broken flowers. joni mitchell ad nauseam. disabled child. ill child. non-verbal child. the nightmare of caregiver infinity. school break with zero programs for my disabled son. tedium. epilepsy. caregiver fatigue. dreading a bleak future. dark circles under my eyes. watching the world go by.

gratitude:

stuck at home. sweet, affectionate boy. green all around. budding roses. naps. birds and their songs. my husband michael. shumai burgers. dark and stormy times two. futbol. out on the water under glorious skies and warm, dry wind. health. strength. patience. love. laughter. motorcycle rides. cannabis for my kid's seizures. friends. humor. home made lobster rolls. peonies. butterflies. mom. new growth. joni mitchell within reason. a ten-year-old boy who, the other morning in bed wearing a dirty diaper, i could swear said, "ma." remembering that recent walk on the beach. watching the world go by.

photo by Michael Kolster

faith of my father

The gin and tonic my friend Kellie had given me as I reclined in a bay window did little to ease my worry over my listless two-year-old boy. Calvin slouched limply in my arms in the late-afternoon heat, the cicadas’ buzz splitting the muggy air. Suddenly, the color drained from his face, and his mouth twisted into a grimace, as if he’d eaten something rotten. As the seizure took hold of his brain, his body stiffened into a plank, and his glassy blue eyes rolled back into his head.
 
“Here it comes!” I called, and Kellie and my husband, Michael, came running.
 
Guests who had come inside quickly ushered their kids back out. “Daddy, what’s the matter?” I heard one of them ask from the other side of the screen door. I have no idea what the father told his child or if he even knew what was happening.
 
“Call 911!” I said. Calvin began convulsing, his eyes fluttering, his lips smacking with each new spasm. We turned him on his side and pulled down his diaper. I grabbed the vial of rectal Valium from the pouch in his stroller, cracked off the cap, and carefully inserted its tip into my child’s anus. One, two, three, I silently counted, as I depressed the syringe, injecting enough benzodiazepine to knock a full-grown man out cold ...

—Excerpt from Faith of My Father, which will appear in the August issue of The Sun magazine. To read the entire piece when it comes out, you can subscribe here.

photo by Michael Kolster

cannabis can do

Last night I had a dream about the THCa cannabis oil I am making for my son Calvin to treat his intractable epilepsy. In it, I was describing its properties to someone, educating them, as I am known to do in daily life. Some might like to call my son's success with cannabis anecdotal. I call it plain, palpable, real.

My husband is generally more cynical than I, but we have both seen cannabis' positive effects. It has helped our son sleep better, a boy whose sleep has been interrupted for years by nasty, addictive, deleterious benzodiazapines, which have never completely controlled his seizures. It has calmed him even in the face of taking high doses of two drugs that cause him to bounce off of the walls. Since taking the cannabis oil, a kind that is high in the non-psychoactive cannabinoid THCa, he wakes happy and content instead of irritable and whining.

Long before cannabis, there were months on end when Calvin used to sit—stupefied—in the middle of the room like a floor zombie and do nothing. The dust bunnies were more responsive than my boy. The drug cocktail (way too nice of a moniker) of zonisamide, lamotrigine and clonazepam sent him into oblivion, yet he'd still have a dozen grand mal seizures every month. His current combo of clobazam, brand name Onfi, a relative of Valium, plus leviteracetam, brand name Keppra, has for over three years caused him to be hyperactive beyond belief, unable to sit still and be read to, or to play with his toys for more than a few seconds before having to get up and move. Thankfully, over a year ago we eliminated the third drug in that crazy concoction, rufinamide, brand name Banzel, that turned him into an anorexic, raving lunatic. Since taking cannabis, Calvin now plays with his toys for several minutes at a time.

Besides being calmer, more focused, happier, sleeping better, walking better and standing stiller, Calvin is having substantially fewer daytime seizures. In the months before taking the cannabis oil he was having one daytime tonic-clonic (grand mal) seizure every three to fourteen days. Since taking a therapeutic dose of the THCa cannabis oil he has had only one daytime seizure in seventy-one days! Moreover, we have weaned Calvin off of 25% of his benzodiazepine, clobazam. By the way, for those of you who hope to do the same, benzodiazepine weans should be done very, very slowly, in 10% increments every several weeks at the very least. Done slowly and safely in order to prevent benzodiazepine withdrawal syndrome—a serious condition that your child's neurologist might not inform you of—weaning can take many months to achieve, perhaps longer than a year depending upon the dose. If your child is on clobazam (Onfi), this can be more easily accomplished using the liquid suspension of the drug rather than cutting pills. Your child's neurologist might fail to tell you that, too.
 
Calvin is still having a small handful of nighttime seizures each month, likely because we do not wake him and struggle to administer his cannabis oil in the middle of the night. Instead, we have increased his bedtime dose and, if need be, we will soon be adding a high CBD (cannabidiol) oil to his bedtime regimen. With luck, the cannabis combo will knock his seizures to the ground, allowing us to successfully continue reducing his pharmaceutical meds.

And in case you were wondering, we have seen ZERO negative side effects that could be contributed to the use of cannabis, only positive ones.

If you live in a state where high CBD cannabis oils or plant strains are not available—and even if they are—consider trying a non-psychoactive THCa cannabis oil, which might be just as effective for your child, perhaps more so, and very likely more cost effective. You can find and download the free Epsilon Apothecaries recipe I use here. It's as easy as pie.

P.S. Cannabis has also proven effective in treating other conditions, including various forms of cancer.

Calvin playing with his toys for over ten minutes

in the moment

Yesterday, I read a blog post written by a mother about her daughter, Lydia. Lydia’s father had found her blue, stiff and face down in bed, her death the result of a prolonged seizure, a moment I imagine most parents of children with epilepsy fear. Lydia’s mother had written how she was thankful that her daughter had “died in her sleep and not in the hospital hooked up to tubes,” a miserable state in which so many of us have seen our children.

Early this morning, a moment before sunrise, Calvin woke to his second seizure of the night, and after I syringed part of his morning seizure medicine into his mouth, he went right back to sleep. As I laid by his side, I feared he’d wake to a third, and even dreamed about it once I’d drifted off in his arms.

After I awoke a third time and while Calvin slept, I laid there thinking about Michael’s uncle who died over the weekend after a hard battle against cancer. Thinking about him and his family conjured a mix of emotions: gratitude for the fact that he’d remained sharp and coherent, deep sorrow that his body was forced to surrender to so much suffering. I thought next about my father, who had fought cancer for five years, including two consecutive bouts of pneumonia, before dying suddenly one night at home. He was only seventy. One of my brothers had said to my mother that Dad wouldn't have died if he'd been there, implying that my mother was somehow culpable. Hearing that sickened me. Then I thought about my mother, who is eighty-four and has been plagued by Alzheimer’s for at least thirteen years, perhaps decades. She has forgotten most of her life experiences, all of her friends and much of her family. The disease has shattered her coherence into tiny pieces, but when you ask her if she is happy, she’ll almost always say, “You betcha!” My sincere hope is that she will die peacefully in her sleep before the Alzheimer’s robs that happiness from her.

I thought, too, about my friend Chris who lost his fourteen-year-old son, August, last year, and my friend Christy whose son, Will, died just before his fifth birthday. Both boys were like Calvin in many ways. They were happy kids when they were feeling good, though both required intense around-the-clock care with feeding and bathing and diaper changing and transporting. Their parents' lives then seemed like ours, stifled in so many ways because of our severely disabled children. I wondered if they sometimes felt conflicted about their children, wondered too how their lives have changed in the absence of their boys.

Then I remembered a friend whose healthy son had been so very difficult to raise during his teens that she'd asked God to take him, and the mother of a child with leukemia who asked God to let her keep her daughter for a few more years to see if she'd excel in school, and I remembered thinking once or twice, if Calvin dies before he can walk by himself or say a few words, if it would all seem a waste.

Climbing back into bed with Calvin after giving him the rest of his morning seizure medication, I kissed him and imagined what life would be like for us if he died in the night. I'd no longer have to worry. I wouldn't have to give him medicine or see him endure seizures or headaches or tummy aches or dizzy spells or mania and I’d be able to sleep well, travel and relax. He wouldn’t have to seize or lie awake at night for hours in discomfort and I wouldn’t have concern about what might happen to him after we die, who will care for him, who will love him, who might hurt him. But he’d be gone and so, too, would his smile, his hugs and kisses and giggles, the smell of his breath and the feel of his soft, springy skin. My days would be empty and I’d lie awake at night searching the stars to find him. Perhaps my love of gardening would fade and my reservoir of thoughts and images to be put into words would wither and die. I wondered if I'd blame myself, wondered what would happen to my good marriage.

No matter how I looked at it though, whether wanting Calvin to live or imaging him gone, it all seemed so selfish. But then I stopped myself and thought of the suffering—this needless suffering of a ten-year-old boy who can’t tell us what he might want to tell us and doesn't know why he feels so incredibly bad much of the time—and it put me back in the moment, which is where I need to always be in this crazy, effed-up world. In this case, it happened to be in bed soothing my little boy, his arms around my neck where he so often wants them to be.

photo by Michael Kolster

things that make me breathe easier

husband. fresh air and wind. peonies. cannabis for my sick kid. not having to split tiny, unsplittable pills. barbara. sitting alone in the eveningstar theater with a bag of popcorn. gardening. long views. bourbon on the rocks. sunlight and golden fields. seventeen seizure-free days. date night. drinks with the gals on a warm afternoon in the shade of a balcony built over the river. smutty humor. laughter. green. wes anderson films. azaleas. calm boy. smiling boy. toddies on the porch with woody. dancing by myself to a live blues trio in a narrow space amongst a happy crowd in a dark tavern where no one else is dancing, where the bartenders are funny and michael is within arm's reach watching me with a smile on his face. sleep, if i could get some. friends and neighbors. summer.