torn apart

Yesterday tore me apart. Calvin suffered seizures all day long, including two grand mals and as many administrations of rectal Valium. One dose was during a deep partial seizure that lasted long enough for Calvin’s face to begin turning blue, causing me to imagine what it might be like if Calvin died right there on the spot.

His second grand mal came on while Michael and I were changing a poopy diaper. Our boy’s body stiffened, his legs becoming rigid and twisted like drift wood. When he began convulsing I was able to insert the rectal gel and the seizure stopped soon after. We lifted Calvin’s limp body—I thought again about his death—onto the couch with Michael where they slept for the good part of an hour, Calvin’s eyes, at times, half mast. At their feet, perched on the arm of the couch, I cried, weary and fearful of what so many seizures and drugs might do to my child.

Last night I slept with Calvin, woke when he did, changed a wet diaper, gave him the water which he had refused most of the day, gave him an extra Keppra at midnight and extra cannabis oil at ten and two. At times I felt feverish and dizzy, a case of mild and temporary vertigo still vexing me some nights. 

My life must be out of balance, I thought, remembering what a doctor had told me the first time I experienced vertigo after having moved from San Francisco to Maine.

As I dozed off to sleep with Calvin’s arms around my neck, I wondered how my life might be out of balance (save raising a legally blind, non-verbal, incontinent, severely disabled child with intractable epilepsy who is the source of great angst and loss of sleep). After all, I’m grateful to have an amazing husband, a cozy home, a beautiful garden, an incredible group of friends, a supportive community and a boy who is brimming with love and affection. And, except for the challenges of being a woman living in a patriarchy, as a white person I am not oppressed. Lying there, I finally realized that a good part of the reason I feel so out of balance is political in nature, fearing the people in this country will lose many of the civil rights and liberties they have worked so hard to get.

Many of you may not know that the first of Hitler's victims were the infirm and the disabled. Yep, before rounding up and exterminating the Jews, Hitler and his band of merry sadofascists came for the disabled because they were thought a stain on his notion of a perfect race. The knowledge of this history is partly why I fear and loathe the current president, one who just put a White nationalist in one of the most powerful executive branch positions in this nation and one who has just barred good people because of their religion. 

I’ve heard people insist that not all Trump supporters are racists or bigots. But, perhaps not all Hitler supporters were anti-Semites, and yet their naiveté and silence enabled an entire people's demise. I’ve heard Trump voters, in their support of a Muslim ban, claim that ours is, and must remain, a Christian nation, and yet the first invaders of this Native land were refugees fleeing religious persecution. I've heard scores of folks grouse about immigrants, and yet we are a nation of immigrants. I’ve heard Christians complain about God being missing in our public schools and government, and yet our founders felt the separation of church and state compelling. I’ve heard Christians’ contempt for diverse lifestyles, other religions and social programs to serve the needy, ones that Jesus would no doubt champion.

Perhaps in an attempt to bring balance back to a world with a fear-mongering despot at the helm, I say to those who deny his blatant bigotry, who, like him, pit one religion against another, who've succumbed to his charlatanry, that when it comes to justice—not only for my disabled son but for everyone who is marginalized, discriminated against and oppressed—I can never agree to disagree.

And so when I tuck Calvin in tonight, knowing he'll be safe and sound in this (regrettably) mostly straight White Christian hamlet, I'll hold in my heart those who have been, or will be—by a man who now has as much privilege and power and perhaps as little compassion as anyone in the world—torn apart.

larger than myself

It was an agonizing decision, but after resolving not to fly to DC for the Women’s March on Saturday, I finally felt at peace. Many dear friends and some amazing strangers, through their kind messages and words of support, helped me come to my conclusion. The morning of the march, however, I wept. I felt trapped in this little town, one which I haven’t been able to escape from for over two years. I mourned the loss of the chance to be a part of something larger than myself. Michael held me, which always makes me feel better. A few hours later, we packed up and drove south to Portland.

We parked in the sun about a block from Congress Avenue near the end of the protest route. It was a mild day for January in Maine, in the low forties with no wind. Bundled up in hats, scarves and gloves, the three of us, plus Nellie, picked a spot on the curb and watched the parade of demonstrators descend from Munjoy Hill, a handful of happy cops with their blue lights flashing in the fore.

Calvin was in a fine mood, and I wondered if he enjoyed the noisy crowd with their bright posters and chants of solidarity. For an hour and a half, a steady stream of people of all ages and walks of life, led by a young woman in a wheelchair, passed us by. We'd learn later there had been as many as ten-thousand marchers in our small city. An animated man with long grey hair appointed himself to direct traffic at the crossing. We saw dozens of friends who came up to us with hugs. It seemed everyone who passed looked at us standing with our drooling disabled kid biting the scruff of his jacket and going a little berserk at times. One woman holding a sign that read “Liberty and Justice for All” glanced down at Calvin, then smiled and tipped her head to me. I choked up on the spot at her validation of us. Michael’s eyes watered in the cold.

Nothing but waves of love and inclusiveness radiated from the peaceful crowd, and in scores of cities across the nation and in cities on six continents, millions of people marched to show their support of women, the Disabled, immigrants, Muslims, Black and Brown people, LGBTQ people, the underpaid and underserved. Some of my favorite signs read:

my rights are not up for grabs

respect existence or expect resistance

feminism is the radical notion that women are equal to men

i’m not a sign guy, but geez

leave it to the beavers

1968 is Calling. Don’t Answer

I would not want to be the guy who pissed off all these women

We are the 51%

Make America think again

Thankfully, there were few signs that referenced the man-child who took office last Friday after having issued a bleak and egocentric inaugural speech to a relatively modest-sized crowd so white I did not recognize it as wholly American. Our marches, in contrast, were beautifully diverse as America and about hope, love, support and compassion for each other, action and solidarity.

On social media the past week I fielded some questions about the marches. The queries, verbatim, were:

What do all the protesters (and we all know violence will erupt), expect to happen from their actions? Are they expecting Trump to quit? Do they think we all don't know by now their views? Why the gatherings to spew hatred? Wouldn't getting involved with local government be a more efficient use of time? And what did they accomplish?

I assertively addressed the questions—some of which had made me cringe because of the way they were worded. I was called smug and condescending. I was labeled a hopeless liberal. I had attempted to honestly answer the queries while respectfully challenging their assumptions. I had hoped to offer the insight they professed to be searching. I was met by some with scorn, which only served to strengthen my resolve.

Under a filtered sun, as the last marchers approached, my family joined the crowd as some dear friends pushed our empty stroller. Calvin, Michael and I marched a couple of blocks for women's rights and the rights of the most vulnerable in our nation. We marched for Calvin, because the current administration has appointed secretaries who would put in jeopardy Calvin's special education services and healthcare. We marched in solidarity with the majority of Americans who voted for inclusion, justice and equality, for bridges to be built, not walls. I smiled the entire time, even as I wept. My heart brimmed with the knowledge that no one can quell this massive, resistant, powerful, common voice against oppression, and the amazing sense of becoming a part of something larger than myself.

Photo by Connie Chiang

striking walls

Deep in my sleep in the dead of last night I watched my parents die. It was dark and cold in my dream as I left the home of a friend then strolled down the steep. Unknown others from unknown places joined me in my march. On the road below I saw a familiar car skidding down the serpentine hill toward a hairpin turn that I knew it would be unable to survive. At a swift speed the car—large and heavy metal, the kind that old folks drive—struck a vertical rock wall. Upon impact, the nose of the car crumpled, and I saw my father’s arm sandwiched behind the wheel as if it were a flag.

“That’s my mom and dad inside!” I shrieked twice into the crowd, “Someone call 9-1-1!”

Those last five words, spoken aloud, woke me from my dream, which left me nearly sweating, worrying about my sick little kid and about my indecision to attend Saturday’s DC march.

After a pee and a drink of water I managed to fall back to sleep until four when I awoke to Calvin’s grand mal. It has been twenty-seven days since his last one, and so it wasn't too terribly disheartening until the second grand mal two hours later, plus the spate of partials he’s suffered much of the day, and the rectal Valium, extra Keppra and cannabis I've put on board.

Truth be told, I’m exhausted, and at times yesterday so exasperated I wanted to strike a wall, having taken care of a writhing, vomiting boy who unwittingly punches me in the throat and eyes, and spending too much angst and energy fretting my decision about traveling to Washington. To be honest, if the trip were just slightly simpler, maybe I’d jump at the chance to join the hundreds of thousands who’ll be standing up for women’s rights, the rights of Black and Brown lives, the rights of Muslims, immigrants, refugees, the LGBTQ community, and the rights of the disabled. Last night at dinner I told Michael as much, saying that if raising Calvin weren’t so goddamn complicated and taxing—the sleep deprivation, the logistics, the worry, the medical analytics, the monotony, the physical exertion, the demand on my patience and nerves—I’d have few second thoughts about picking up and going to DC. After all, I've got my plane ticket. But I don’t think I can make it this time without spreading myself too dangerously thin and risking illness or injury.

Returning to my dream, I envisioned the car crashing into the mountainside. I thought about my parents—Dad whose been gone twenty-one years, Mom who left us a year ago last October—thought about Calvin, thought about Michael and me. Then I imagined Saturday’s glorious melting-pot of bodies and faces that I ache to immerse myself in—molasses black, mahogany brown, tawny, white, red-freckled and fair—and I was reminded of a quote by Maya Angelou I'd recently seen:

Each time a woman stands up for herself, without knowing it possibly, she stands up for all women.

Then I realize that, in my absence, there will l be legions of women—and allies—gathered in DC standing up for me. And while they're striking the walls of inequality in our nation's capital, while they are braiding an unbreakable chain of diversity, I’ll be clutching my heart and clenching my fist in solidarity.

our sick boy this morning

cold feet

Having spent the morning and a good part of the afternoon catching Calvin's mucousy bile in a towel every hour while struggling to keep him from going onto his back, which he is wont to do whenever he vomits, has given me added pause about heading to DC this Saturday.

For some time, I’ve been struggling with my decision to attend the Women’s March on Washington, with a small group of friends the day after this Friday’s inaugural abomination. I bought my flight on a whim, having not stopped to think through the logistics. Since then, I’ve been sweating the details: having to get up at three a.m., wondering if I have the right shoes and if my plantar fasciitis will flare up from walking all day, wondering if we’ll find a parking space at the metro, wondering if I’ll have enough energy, fretting not getting home until midnight that night and having to wake up Sunday at five-thirty.

I’ve been weighing the pros and cons ad nauseam. On the one hand, if I go, I’ll be part of a huge, inclusive and important movement calling for justice which, after all, is what I’m most passionate about fighting for. On the other hand, if I stay, I might be able to join a much smaller march with Michael and Calvin alongside a different group of friends in downtown Portland, Maine.

I’ve expressed my reservations to a handful of friends, telling them how I don’t like to make fear-based decisions, telling them I feel like a wimp for hesitating. Yesterday, though, I realized that I am not at all afraid to go; it’s worry and exhaustion that are paralyzing me. Were I in better shape or single, or if Calvin were typical and healthy, I’d likely have zero reservations. As it is, he’s a handful for me alone to take care of all day and night much less for Michael who doesn’t have his meals and meds and schedule memorized. Often, caring for Calvin is a job for two, especially when he is sick.

Yesterday, I returned to a sunny, partially thawed-out spot at the fields with my dear friend Maura. As Nellie bounded around, I lamented my misgivings about the march to Maura. She shared her own about a similar march she’s headed to in Boston and how she’d read some tips for demonstrators, one of which suggested that participants wear diapers because there’s nowhere to pee. In counting up pros versus cons, one of the pros of my not going is there will be one less person standing in line for scarce porta-potties, freeing up the space for someone who didn’t come wearing a diaper.

By late morning I had decided to see how it felt to imagine staying home on Saturday. I’d be able to apply the unused plane ticket to fly to New York in the spring, or so I thought. Further investigation, however, proved that Southwest Airlines doesn’t fly to New York from Maine; one more con to add to my list of growing concerns about staying.

Last night, the scales felt more balanced. It’ll be near sixty degrees in DC. Perhaps if I were to go without any expectations I’ll be more pleased. Maybe I shouldn’t worry about my feet hurting or about not getting enough sleep. As my husband often says, you can sleep when you’re dead. But the chance to raise my voice for equality, respect, inclusiveness, in the face of losing so many hard-fought rights to the incoming administration—including for disabled children like my son Calvin—the time to march is now.

But because of today, I've got really cold feet, and I'm back to feeling like I should stay and take care of business here. And maybe, if my kid isn't sick, I can march with my family in Portland, Maine.

holding my breath

I'm holding my breath; today marks twenty-one days since Calvin's last grand mal seizure, and ten since his last partial one. This means he is on track to break a recent record, in that it has been over two years since Calvin went twenty-two days between grand mals.

The other good news is that my boy has been doing great at school, is walking better all the time and has been sleeping soundly on most nights. Moreover, Calvin is taking the smallest amount of pharmaceutical drugs since he was three years old. Since April of 2014 we've taken him from 35 mgs of clobazam down to just 2.5 mgs per day. When we factor in his near twenty-pound weight gain in that time, we're talking a greater than ninety-five percent reduction in benzodiazepine. Besides a thyroid hormone replacement, his only other pharmaceutical is Keppra.

To what do I attribute this luxurious seizure-free stint? The only significant changes I've made to his regimen in the past month, or so, is to slow his benzo wean and increase his bedtime dose of THCA cannabis oil, so I'd have to say it might be a combination of the two, but it probably helps that he hasn't been sick in weeks.

Come to think of it, we have never reduced Calvin's benzodiazepine without seeing him endure at least one seizure within the several days following a wean, so this is a first, too.

I'm holding my breath, however, because I know just how epilepsy rolls.

the big rock candy mountains

They came bearing gifts of whiskey, wine and chocolate. The first thing Ades said when he walked through the door was, “Where’s Calvin?” I had a feeling he flew up from Virginia for a visit that lasted less than twenty-four hours just to hug our boy. He got to do plenty of that. Calvin has always taken well to “uncle” Paul. Perhaps it’s something in his deep voice. Maybe it’s his nice smell, or perhaps it’s the mere fact that Paul isn’t afraid to get close to our unusual, squirmy boy.

For nearly a week after Paul’s departure, we continued to stay up “late” with Michael’s other college buddy, Wolf, shooting the shit, imbibing a little too much, watching Paul Thomas Anderson and Coen Brothers films, delighting in the seventies music from Boogie Nights and in some of the lyrics of The Big Rock Candy Mountains:

In the Big Rock Candy Mountains
All the cops have wooden legs
And the bulldogs all have rubber teeth
And the hens lay soft-boiled eggs

The farmers' trees are full of fruit
And the barns are full of hay
Oh I'm bound to go
Where there ain't no snow
Where the rain don't fall
The winds don't blow
In the Big Rock Candy Mountains.

In the Big Rock Candy Mountains
You never change your socks
And the little streams of alcohol
Come trickling down the rocks

The brakemen have to tip their hats
And the railway bulls are blind
There's a lake of stew
And of whiskey too
You can paddle all around them
In a big canoe
In the Big Rock Candy Mountains.

In the Big Rock Candy Mountains,
The jails are made of tin.
And you can walk right out again,
As soon as you are in.

There ain't no short-handled shovels,
No axes, saws nor picks,
I'm bound to stay
Where you sleep all day,
Where they hung the jerk
That invented work
In the Big Rock Candy Mountains.

Though we stayed up past our usual early bedtime, Michael and I rose at five-thirty or so every morning as we have done religiously seven days a week at least since Calvin began having seizures and taking medicine for them almost eleven years ago. In that time, I can probably count on ten fingers the number of mornings I’ve slept in at home past six, or so, and never past six-forty-five or seven unless I was sick.

A few days into the visit, while sipping my morning coffee, I came across a piece in the New York Times online travel section titled, 52 Places to Go in 2017. I scrolled down through the list, marveling at the photographs and reminiscing about some of the same international places I’d been—Canada, Zermatt Switzerland, Dubrovnick Croatia, Tijuana Mexico, Athens, Budapest, Madrid. On a seven-month solo backpack trip to Europe when I was twenty-three, a trip to Eastern Africa two years later and a trip to Asia when I worked for Levi Strauss in my thirties, I’d been within miles of a few others on the list—Penzance England, Comporta Portugal, Hamburg Germany, Calabria Italy, Antequera Spain, Istria Croatia, Bozcada Turkey, Laikipia Kenya, and Busan South Korea. I lament that I don't—can't—do that kind of travel anymore, but I'm grateful for having had the chance.

Wolf, who was visiting from Brazil, wondered when the last time was that I had left home. I told him it was two years ago to visit my mother in San Diego nine months before she died. Most of my trips in the past ten years have been to see her there. Seven years ago come spring I took a rare trip to New York to visit friends and see art, then returned several years later with Michael for a twenty-four-hour stint when he had a solo show in Chelsea the summer of 2012. The last time I flew back to Seattle to see childhood friends and to attend my class reunion was five-and-a-half years ago, and the last time we visited Michael’s parents in Florida was, I think, in 2011. I haven’t been back to my beloved San Francisco in ten long years. Of recent, any traveling I do is in my mind, like while scrolling through the New York Times or traveling vicariously by way of friends' adventures.

Last month, I did buy a ticket to Washington DC to join the Women’s March which is the day after the POS’s inaugural abomination. I fly down and back same day. If the weather holds, and if Calvin is well enough for me to go (I should mention here that today is day eighteen since Calvin’s last grand mal ... his second longest stint in over a year) I’ll be getting out of this shitty little town—that I’ve actually come to like all right—for the first time in too many years. Upon my return I think a celebration with bourbon and chocolate will be well in order, and though I've never been there, in my mind I'll be traveling to the Big Rock Candy Mountains.

Photo by David Wolf

some things change and some things stay the same

While trying to gain more space on my computer's hard drive this morning, I came across the video below. It's of Calvin when he was five, after having weaned him off of one benzodiazepine, clonazepam, with the aid of another, clobazam, aka Onfi. I'd forgotten until seeing this that he's been on clobazam for so long, which no doubt contributes to its difficult and protracted withdrawal that will, unbelievably, enter its fourth year in April.

In the video I see a child who is almost six but who appears as if he is a toddler. I see a boy who is vexed by mere gravity and by antiepileptic drugs causing dizziness, weakness and fatigue just to name a few. I see a boy struggling to regain a hard-fought skill—getting into a stand on his own—which he lost to the ills of too many drugs back when he was four. I see a grinning boy whose smile had submarined for two years.

I also see my boy who still delights in the sound and feel of banging cupboard doors and wooden shutters, a boy who still has a tendency to drool (due mostly to clobazam), and a boy whose feet make slapping sounds when he walks because he doesn't—can't—step heel to toe.

As we slowly remove Calvin's benzodiazepine (we've taken him from about 1.8 mgs/kg down to 0.1 mgs/kg), we see a boy emerge who is in many ways the same as he was before he took any benzodiazepines—happier, calmer, stronger in some ways, clearer, steadier. But partly because he's been on so many debilitating drugs for so long, and as long as he must take them to tamp down his seizures, he'll likely remain, in many ways, the toddler we knew when he was only five.

new year blues

It was no great surprise to witness Calvin have a partial seizure this morning, but his face, both wan and flushed and with a dreadful look of terror, frightened me. He began trembling and shaking and frantically grabbed me around my neck as if wanting to be saved from something monstrous. When it was over, I was able to give him some extra cannabis oil I had drawn up in a syringe, aiming to prevent more of the same.

In more ways than one, I'm hoping this morning's New Year's Day seizure is not some bad omen of things to come in 2017.

The kid is volatile today, like some Jekyll and Hyde child. One minute he's a raving lunatic, the next, a fawn. And while I don't know what to expect, I try to mentally brace myself for the worst, given it has been nine days since his last seizure.

I'm feeling similarly about the incoming administration, keenly aware and dreading all the ills that could happen when the petulant POS (not to be confused with POTUS) and his goons take office—the rollback of the Affordable Care Act, marriage equality and Roe vs. Wade, a worse turn toward mass deportations and the breaking up of families, a Muslim registry, a nuclear arms race.

I feel the most vulnerable of Americans—women and minorities of all races and sexual orientations—will have our rights seized, our freedoms choked by this clown, fear he'll try to smother our access to healthcare, our rights to a living wage, clean air and water, sacred lands, affordable education, the ability to roam free from the fear and danger of guns.

Like with Calvin's fits, we need to be watchful—hypervigilant really—need to stop each seizure in its tracks the best we can, then brace ourselves for the next assault, because there will no doubt be one.