7.21.2014

under the skin

A murder of crows cawed and cackled outside my son’s bedroom window. I laid next to him and held him after his seizure, which happened shortly after waking. I had found him face down gurgling and twitching in an indigo puddle of drool.

The day, Sunday, felt like olden days, though not in a good way, because throughout it Calvin had several of what appeared to be complex partial seizures, the kind he'd sometimes have eight or ten times in a day eventually developing into status epilepticus, which always landed us in the pediatric intensive care unit via ambulance. These seizures, likely the result of the previous days’ benzodiazepine reduction, are semi-conscious episodes during which Calvin spaces out, his lips blanch, his breathing shallows and, at the end, he takes a deep breath and sighs.

Though these seizures usually only last between thirty and sixty seconds, they sap the energy out of him. Yesterday, he was so listless he let me cradle him for minutes at a time without squirming out of my grasp. With my arms around him, his head on my shoulder, I remembered a time before the epilepsy, before the psychoactive pharmaceutical drugs he’s taking caused him to become so hyperactive. I recalled a time when I had nursed a calm baby, when I had napped in the embrace of a calm boy, when I had played catch with a child who’d sit still, at least for a while, to receive a ball placed into his hands. Now, Calvin can’t stay still because of the paradoxical effects of the antiepileptic tranquilizer, clobazam, and the mood altering, agitating Keppra. Thankfully, the THCa cannabis oil seems to be helping some to soothe his soul.

As I laid awake next to my sleeping boy I reflected on a disturbing film that Michael and I had watched the night before. Under the Skin, the erotic and unnerving sci-fi thriller, had lived up to its name, its haunting images visiting me throughout the day as I cared for Calvin. In one scene, Scarlett Johansson, who plays an alien predator, lures a stranger into an inky pool from which there is no escape. Once submerged, the man appears able to breathe the thick liquid in which he is suspended. He expresses confusion and worry, looks as if perhaps he needs to retch. Nearby, he sees another man, bloated and thin-skinned, suspended in the silent blue. He reaches out to the man's swollen hand and, upon touching it, recoils as the puffy man unleashes a silent scream. The sickening image rolled around in my mind, its indigo fluid swirling in a mouth-watering river of nausea in which I found myself inert.

With my eyes closed tightly, I couldn't help but liken Calvin and myself to the two submerged figures, he and I suspended in the misery of our epileptic nightmare. I imagined our silent screams for help, Calvin's headaches and confusion, his inability to escape the seizures that engulf him and the drugs that bathe and bloat his brain. Under the weight of the wave there is nothing there for us to push off from. It feels as if we are immersed in a poison that seeps under our skin and lives there.

But at least for now, we are together and we can still breathe.

photo by Michael Kolster

7.20.2014

andy and me

The last time I spent any significant time with my friend Andy, we were probably in our tweens and teens goofing off at the pool, tossing lounge chairs into it and surfing its bubble-plastic insulating covers at night, doing stunts off of the three-meter diving board, playing sharks and minnows, dipping our licked fingers into boxes of dry, sugary Jell-O between swim meet races, riding bikes up and down Phantom Lake and Spiritridge Hills eating sticky bits of broken Big Hunk nougat bars and handfuls of Whoppers and Skittles while listening to KC and the Sunshine Band.

If someone had told me that one day, at fifty, we’d be walking side by side along a fogged-in Maine beach talking about his wife Lori and one-year-old son Alec and my Michael and Calvin, I’d have laughed in amusement. After all, and regrettably, it has been a serious rarity, being so far away from the Northwest, to receive visitors from my youth.

After a long, leisurely hike through dewy white pines, maples and oaks teeming with mosquitos, Andy and I stood for a time leaning against a tangle of blanched driftwood piled on the shore by passersby into a kind of twisted triangular shelter. Looking out through the mist into the sea, I told him how the grief of having a severely disabled, chronically ill child never goes away—the loss, the disappointment, the constant worry and the nag of shattered dreams. As I spoke my lips quivered and tears spilled onto my cheeks. I turned to him and we embraced. After a good, long hug we started back to the trailhead. Walking arm in arm with him he felt like a brother. He said he was sorry—for me, for us—but I could tell it wasn’t pity he felt, it was sympathy.

At the salt marsh midway to the parking lot we spotted a great blue heron closing in on its prey. We stood watching as it crouched into the reeds at the side of a creek. Suddenly, it plucked what looked like a small eel from the water, then stood for a while shaking the life out of its meal before swallowing it whole. The eel never stood a chance. I thought of Calvin and pondered his fate.

When I dropped Andy off at the airport after his stay, we hugged again. He told me that I was a great mom then said how he felt like he’d made a new friend in Michael. As I drove home thinking about this person whom I’ve known most of my life—used to spend every summer with, hours and days on end—I realized it felt like I’d made a new friend, too. Because of Andy's visit we’ve crossed a kind of intimacy divide where, for a time, he stepped into my shoes, saw my world, felt my angst and joy and pain because I don’t hide it, can’t. Andy accepted no apologies from me, though I felt compelled to offer them in the wake of my ugly outbursts of frustration and exasperation. He takes me at face value, accepts me as I am. He promised to try and return to Maine some day. I am already looking forward to his visit.


7.14.2014

august in tennessee valley

This weekend my friend Chris held a memorial service for his son, August, at the Tennessee Valley Beach in Marin County, just north of San Francisco across the Golden Gate Bridge. It's a favorite place my husband Michael and I have visited many times, making the four-mile trek from parking lot to beach and back along a narrow dirt trail which passes by fenced-in horses and grassy culverts. Wildflowers dot the mountainsides and the valley floor as the trail slowly descends to the Pacific, almost always under cloudless blue skies.

It has probably been fifteen years since I've been there, the last time being long before I got married though perhaps around the time I began seriously hoping to start a family with Michael. I think of our hikes in Marin often—Bootjack, Pantol, Steep Ravine, the Dipsea Trail which snakes up through Muir Woods to an open crest on Mt. Tamalpais before descending through a wooded glen into Stintson Beach—how the only thing I might've been burdened by on those excursions was my water bottle. I never liked carrying a backpack, preferred traveling as light as possible in sneakers, shorts and tank top with a camera slung over one shoulder.

Years later, to a fair degree, I find myself boxed in here in the Northeast with a severely disabled son who is difficult to travel with and, now that he is taking cannabis oil for his epilepsy, impossible to take out of the state legally. Sometimes I pine for the West, its big skies, breathtaking vistas, warm dry air, its vast public beach access that stretches for hundreds of miles, its carefree vibe.

I remember Chris, a professor of English whom I met through Facebook, once writing about how he and his family were pretty much incapable of traveling because of the difficulties of managing their disabled son, August, who died last year at the age of fourteen. Sadly, I'm not sure August was ever able to enjoy seeing Tennessee Valley, breathing its fresh air, dipping his toes into its waters, but now his ashes will forever mingle with its sands and sea.

This weekend I thought of Chris, August and family often as we spent three days, without a nurse to aid us, following Calvin around the house and yard, righting him when he tripped or stubbornly balked, shielding him from staring at the sun, chopping his food, spoon-feeding him his meals and meds, changing his diapers, attempting to comprehend what he was trying to express through his annoying, worrisome whining and coughing. I wondered if we'll ever take Calvin to Tennessee Valley, if one day he'll be able to walk even part of that distance with us, wondered if we'll ever be able to get on a plane with him and his cannabis oil without being arrested for possessing it, even though it is his essential medicine.

Though it is absolutely gorgeous here in Maine, and we have a beautiful house and garden and a wonderful community, the land is mostly flat, significantly limiting the sight lines, and in the summer the air is often humid and close. So, for now, I will muse on the image of the California Coast, its openness and its magnificent views to the rest of the world, hoping that someday soon, if just briefly, I'll pass August in Tennessee Valley.

Tennessee Valley Beach photo by

7.11.2014

18-51-85

I'm holding my breath, crossing my fingers, knocking on wood that the homemade cannabis oil I've been giving Calvin since late February continues to work its wonders.

It has been eighteen days since I last saw Calvin have a seizure. It has also been eighteen days since we reduced his benzodiazepine by ten percent, contributing to an overall reduction of twenty-five percent. Assuming I didn't sleep through any of his nighttime seizures, which is possible, it means he hasn't had a withdrawal seizure yet. That has never happened when we've reduced his benzos in the past. He usually has at least one withdrawal seizure within the first week to ten days after a wean.

It has been fifty-one days since I last saw Calvin have one of his daytime seizures that almost always occurred around bath time or dinnertime. More so, he has had only one of those seizures in eighty-five days.

I want to take this opportunity to thank the good people, Jenna and her husband Tim, at Remedy Compassion Center in Auburn, Maine, for setting us up with the cannabis flower from which I make the oil. They run a tight ship and live up to their name. Since my first conversation with Jenna last Fall, I've always felt taken care of. I think, here in Maine, we are lucky, because I know of many caregiver growers who are also held in high esteem, with many hoping to help our children who have epilepsy.

I also want to thank Dave from Epsilon Apothecaries, for the free download of his THCa recipe, as well as for answering scores of my questions. As I have said before, making the oil is easy as pie.

Lastly, I want thank Dr. Dustin Sulak for giving some additional guidance on dosing, his brother Clay for testing and to Proverde for providing additional testing.

Now, if we could just get the Feds to fess up that cannabis should not be considered a schedule I drug, should not be thought of as bad as heroine and worse than morphine, cocaine and methamphetamine. They need to acknowledge its well-documented medicinal benefits and deschedule it so it can be properly researched. The Drug Enforcement Agency needs to quit hiding behind age old lies and false, hurtful propaganda so we can get down to the business of healing instead of continuing to demonize and forbid this most helpful medicinal herb.

7.09.2014

one world

Calvin's epilepsy—the suffering it causes, the challenges it creates, the sorrow it provokes—often gives me pause to consider bigger things, incites me to contemplate life and all of its complexities from different perspectives. Sometimes I peer from the inside looking out, at others I gaze from the outside looking in. And always, with regard to the world—the universe—I am forever humbled.

Alex Churney, A Milky Way Shadow at Loch Ard Gorge
How vast those Orbs must be, and how inconsiderable this Earth, the Theatre upon which all our mighty Designs, all our Navigations, and all our Wars are transacted, is when compared to them. A very fit consideration, and matter of Reflection, for those Kings and Princes who sacrifice the Lives of so many People, only to flatter their Ambition in being Masters of some pitiful corner of this small Spot.

—Christiaan Huygens, The Immense Distance Between the Sun and the Planets, 1698


Associated Press


When you're finally up at the moon looking back on earth, all those differences and nationalistic traits are pretty well going to blend, and you're going to get a concept that maybe this really is one world and why the hell can't we learn to live together like decent people.

—Frank Borman, Apollo 8, December 1968


The world looks marvelous from up here, so peaceful, so wonderful and so fragile. Everybody, all of us down there, not only in Israel, have to keep it clean and good.

—Israeli Air Force Col. Ilan Ramon, 29 January 2003

7.07.2014

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

7.05.2014

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