1.13.2017

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.

1.10.2017

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

1.04.2017

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.


1.01.2017

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.

12.30.2016

ice storms

ice storms: rousing. beautiful. treacherous. unpredictable. silent. unnerving. still. winsome. smothering. haunting. worrisome. electric. luminous.

seems apt that my boy calvin was born into one.


12.26.2016

a good time was had by all

The kid picked himself up and dusted himself off on Christmas morning after a difficult Saturday full of partial seizures. Despite the worry and sleep deprivation because of my son, plus all the horrors that are going on in the world, yesterday I was able to enjoy some peace and quiet hanging out with Calvin as he crawled and stumbled around and "played" happily by himself while Michael cooked a Christmas meal.

Yes, a good time was had by all. Calvin was a joy all day and he went right to sleep at bedtime. He slept soundly through the banter of six lively diners just one floor below who passionately discussed politics, books, photography, responsible journalism in the age of what's-his-face, and included a number of (mostly my) dirty quips. Yesterday ended up being one of the nicest, stress-free Christmases in recent memory.

These glimpses of relative normalcy are what keep me going in the long run, and I am grateful to the stars and back that such can be so.

12.25.2016

christmahanukwanzaakah

There was very little that was merry about yesterday; our sweet boy endured a dozen or more partial seizures from dawn until well after dusk. I laid with him in his bed upstairs all day as he napped on and off, waking only to have the next seizure. At times he'd cry with a look on his face as if imploring me to make his hurt stop. I threw extra Keppra down him plus several doses of extra THCA cannabis oil but nothing seemed to stop the fits. There is little doubt in my mind that he was suffering at the hands of the benzodiazapine withdrawal, which I had reinstated three weeks ago.

Even so, I manged to get outside just after sunset to walk Nellie at the fields, which were shrouded in mist, while Michael stayed home with the kid. He'd spent much of the day doing the grocery shopping for two holiday meals and preparing our annual Christmas Eve dinner and dessert. Though we are not Christian, we enjoy celebrating some of the secular traditions of the holiday, namely the Kolster family bourbon eggnog.

After we put Calvin to bed and kissed him goodnight, I slipped out again with Nellie off-leash, treading on the icy sidewalks to see Woody, my octogenarian friend who lives three doors down. He let us in and, in usual form, offered me a bourbon on the rocks. I declined this time, then went into his den to pet Trixie the cat who was curled up in front of a fire. Nellie joined in and licked her ears. Before leaving, I gave Woodie his gift: a bottle of blended Canadian whiskey, his drink of choice. He hugged me and, with rosy cheeks that I kissed, said, "You guys are the best. I love you." I returned the sentiment, wishing him a happy Christmahanukwanzaakah as I left. Woody chuckled and waved goodbye.

I shuffled home, entered a warm, aromatic house and poured a couple of much-needed eggnogs for me and Michael, who had been busy putting the finishing touches on a rack of lamb, a potato and celeriac gratin and bouquet of dainty asparagus. With Calvin in bed, we sat at the table, candles lit, poured ourselves a bit of Cotes du Rhone and recounted the day's sorry events. Still, I was quite humbled, thinking of the Syrian refugees and other immigrants who have endured a most harrowing year, every scrap of their existence, including loved ones, left behind or violently taken. I considered our afflicted child, weighing our difficult circumstance against all we have: a cozy home, Michael's solid employment, plenty of food and drink, running water that is free from lead, a loyal pup, an affectionate child, a lovely garden even in winter, and a seemingly infinite supply of music, friends and love. Again, I realize our immense privilege.

Tonight we host Christmas dinner for some of our favorite secularists. On Michael's menu is a spiral cut hickory-smoked ham, cauliflower gratin and roasted Brussels sprouts. And with those less fortunate in mind and those facing uncertainties of other myriad kinds, some of whom we've donated to in lieu of giving gifts, I'll no doubt be toasting that which is paramount now perhaps more so than in recent years: for love and compassion to conquer fear and hate.