bodies of water

Adrift with my boy in his boat of a bed, he shivers and shakes in the wake of his brain’s storm. We’ve kissed him and dripped cannabis oils between his parted lips hoping it'll calm the seas of the seventh day. I drape my wrist over his hip and feel his wicked twitches, keeping my eyes peeled and hoping his don’t open again to seize.

With my hand on him I fix to heal and calm, sending through my palm what my mind’s eye sees: bodies of water like glass.

Eyes closed, I glide across Pleasant Pond, wind smoothing back my hair, but then I remember its clear skies clouding into a storm and so I go, flowing back to Phantom Lake, deep and dark and serene, where a water ski below my feet slides in serpentine. Just down the hill my sleeping giant Sammamish rests, its faint ripples ironed by mist and then, amidst a desert of dry falls, Deep Lake's face is wreathed with blossoming clouds. Back in Maine, Quahog bay, like the creatures it keeps, is silent, sleek and green. And at last, a river of glass, Chelan, crystal clear and cool. I let these bodies of water flow through me into my sleeping son, whose shivers, I hope, are nearly done.

In the light, his cannabis oils glow golden, and I imagine the drops he drinks as a river of a thousand suns setting over the deep.

Qhahog Bay

walking in circles

is what we'll be doing tomorrow and Sunday while the effects of global warming create blizzard conditions again and dump another twelve to twenty-four inches of dizzying fallout on top of what is already five or six feet of the white stuff we've come to loathe: snow.

strangers, friends and neighbors

Sunday night after a twelve hour stint in the emergency room, Calvin having endured repeated seizures plus four emergency medications—sedatives meant to quell the seizures—he suffered two more in bed at home. After the second one, neither of which were convulsive, I gave him some extra cannabis oil, mixing the THCA oil with the CBD oil. Thankfully, he didn’t have a third seizure.

All day long Monday and Tuesday Calvin was listless and spacey. I’d kept him home from school both days because he didn’t want to walk and, when he did, his balance was awful. At times he dropped to the floor from exhaustion, dizziness or confusion. The snow, which had again begun falling early Sunday morning, had not relented, laying down inch after inch all day Monday. As Calvin rested I managed to write of his ordeal and after posting it to this blog I received over one-hundred messages of love and concern from near and far, from loved ones, strangers, friends and neighbors. These are but a few:

Hey Doc, no words are adequate.  Just thinking about Mr. C and sending him any karma that’s about.  Best to you and MJK

Hoping that you are all resting comfortably back at home--and that you are enjoying a quiet cup of coffee this morning. Hugs.

I'll call you in a bit. I'm so sorry.

sending you love.

can i give you a piggy back ride, like ANYWHERE all day? i'll wear a special hat with straws sticking out of it--beverage of your choice. then i'll rest you down on a bed of roses and lavender. oh how i love you.

Hugs to you, Calvin and Michael. Any other words just fail me right now...

Oh No! Christy, I am so very sorry. My heart is aching for you. ANYTHING at all that you need, call us. xoxoxoxoxoxo

Please never hesitate to send me texts at the crack of dawn asking me to come get Nellie.

We are thinking about you all -- sending warm and hopeful thoughts your way. We'd love to help with dog care, snow blowing, whatever.

For whatever good it might do: we're thinking of you all, and wishing you all a more peaceful day.

There are no words for how much I hate this for all of you. Sending love. xxoo

Sending love and healing thoughts to you and your family always.

Christy, Calvin knows how much you love him. Stay strong my friend and don't forget to sleep when you can. Sending positive thoughts...

At four o’clock on Monday, my friend Teresa arrived with her daughter Elise and her friend Ellie. Though it was bitter—single digits with cutting winds—the three of them took Nellie out for a walk. Just before they left, Mary arrived with Nellie’s littermate, Gryff, to do the same. Several others had also offered to walk Nellie in the cold. Before everyone got out the door Lauren arrived with a birthday board book for Calvin, and she sat with me while I fed him an early dinner. Then, out of the corner of my eye I saw our neighbor, Brian, snow-blowing our driveway after a day’s worth of constant snow had erased any proof that Michael had cleared it that morning. Crying, I cracked open the door and gestured to Brian—the meaty rumble of the blower too loud for me to be heard—by putting my hand over my heart in gratitude. The look on his face told me that he ached for Calvin and for us and that he wished he could do more. Just as Brian was beginning to clear a path for the mailman I saw Vlad coming down the street plodding behind his blower. Brain handed it over to Vlad, who finished up the job. And when I was about as bowled over by love and affection as I could have been, DeWitt showed up with a dinner that Jane had just made—turkey chili with peppers and cornbread still warm from the oven. They even included a couple of beers.

Today is the first day of sunshine in a while and the first in several that I've been able to get out of the house. Without the wind, single digits this morning felt balmy. I took Nellie to the fields, thinking I could walk on the serpentine trails which skiers and snow-shoers had blazed before me, but I was wrong. In the center of a vast cloak of white, each step I took sunk nearly to the knee, my boots taking on snow until finally I foundered and fell on my ass. Standing up was nearly impossible since the snow gave way beneath my hands so I had to roll onto my knees and get up from there. The final fifty yards to the service road were the hardest and, panting and beginning to sweat, I had visions of folks who climb Everest and wondered why. Finally, with feet on solid ground, I felt triumphant. I thought about our miserable day in the emergency room, about the seizures, about the drugs, about the sleep deprivation, the worry, the fear, about the tense situation at home, and I realized, though it is hard, I'll get through it somehow, by myself or with the help of loved ones, strangers, friends and neighbors.

before Sunday and Monday's snow storm

status

Yesterday, the day after celebrating our son’s birthday—eleven years and one day after riding in an ambulance through an ice storm to Maine Medical Center to undergo an emergency c-section six weeks before Calvin's due date—we found ourselves back in an ambulance, Calvin having suffered a series of difficult to control seizures called status epilepticus. We spent twelve hours there.

Status epilepticus is dangerous, because the longer a single seizure or series of seizures lasts the harder it is to stop them, and the patient risks a swollen brain and/or the shutting down of vital organs. At five a.m., after his third seizure at home and having given him extra cannabis oil after the first one, we gave Calvin rescue Diastat, aka rectal Valium. Rather than putting him to sleep it made him catatonic and we weren’t sure if it had stopped the seizure, so we resigned ourselves to call 911. It had been nearly eight years since the last time we’d had to, back when ambulances idling in front of our home were, regrettably, not uncommon.

Still dark and quiet outside, and as Michael carried our boy out to the ambulance through the falling snow, I gathered some of Calvin’s medicines, the cell phone, my jacket and hat. No time to brush my teeth, drink my coffee, put on underwear, feed the dog or let her out to pee. When I stepped inside, the back of the transport felt all too familiar with the exception that this time I was weeping over a growing boy rather than an infant or toddler. Still, the worry is the same, perhaps worse because this little person has woven his way into me like a bur in a blanket which, if plucked out, my life would no doubt unravel.

At the hosptial we were met by a young female doctor named Teri. We told her of Calvin’s history with seizures and she mentioned having a daughter with epilepsy. I could hardly believe it. In all these years of countless specialists, we have never had one to care for our son who knows, first hand, what it’s like to live with epilepsy. Teri was compassionate and kind, patient and empathetic. I knew we were in good hands, and when her shift ended, her husband Ranjiv, another ER doctor, replaced her. Both of them deferred to our better judgement as Calvin’s parents. Both of them spent considerable time talking with us and helping us make each painstaking decision because, to a great degree, both of them knew what it was like to be us.

For hours, as Calvin went in and out of what we think were complex partial seizures, some brief, others prolonged and with symptoms we'd never before witnessed such as strange growls and intense startle-responses, we discussed emergency meds. We first opted to try a dose of nasal Versed, a short-acting benzodiazepine, which made him sputter and cry and which didn’t seem to do much to stave off the serial of seizures. We watched and waited as Calvin seized then slept, seized then slept. Between fits I managed to give Calvin his noontime seizure meds and a late dose of his morning cannabis oils, but still the seizures stealthily and regularly pummeled him for hours.

Finally, after tries from three separate nurses, one of them successfully set an IV so we were able to give Calvin a bolus of fosphenytoin, however the seizures, though they calmed, did not relent. The sleep-seizure pattern repeated until four o’clock when we finally decided to try a second dose of Diastat with the hopes of returning home to monitor him rather than transferring to Maine Med which we were loathe to do. As I sunk my head into Calvin's neck while he slept, the sickeningly sweet smell of Valium seemed to seep through his pores and I realized, if he were to expire, I'd even miss his smell.

The last dose of Diastat, plus being hydrated after hours without fluids, seemed to stabilize Calvin's condition enough for us to take him home. Before leaving the ER we hypothesized with Ranjiv about why this was occurring. Was it an oncoming illness? Was it the smaller dose of clobazam? Was it sleep deprivation caused from the five straight days waking up around 3:15 a.m. and not going back to sleep? Was it that we hadn't increased Calvin's Keppra to account for his weight gain? Was it the cannabis? Is it that he is in the beginning stages of puberty? What my gut tells me is that we got a little bit greedy with the benzodiazepine wean and simply went too fast, reducing his remaining dose by twenty percent in the course of only three-and-a-half weeks. Or maybe it was just a perfect storm of everything.

Calvin is better today, though still a bit punch-drunk, so I remain on edge, never sure when the next jab or hook might send us to the ropes.

photo by Michael Kolster

slow like molasses

In the photograph below, which I love, Calvin is already two or three months old, maybe older, having not come home from the hospital until seven weeks after his birth, which was six weeks early. Tomorrow my boy turns eleven and I can't say—like most parents do—that the time has gone by quickly. But that's okay. Perhaps, in some very strange and upside down way, the oft monotonous raising of Calvin can work as a perk: it forces me to live in the moment and to be ever mindful. Life in general tends to feel as though it is fleeting. Calvin, and these long Maine winters, help keep it slow like molasses, and for that I am grateful.

Happy birthday, Baby. Keep on truckin'.

photo by Michael Kolster

wired (video)

This is not my kid. I know, because before he "had" to start taking anticonvulsant pharmaceuticals he never acted like a lunatic. Of course he cried and fussed plenty, certainly more than most babies, but if memory serves he did not exhibit the kind of agitation you'll see in the video below, at least not until he took his first antiepileptic drug, Trileptal, when he was just two years old, which made him go absolutely berserk.

Since then, we've seen this same behavior while taking Keppra, Clobazam and Banzel. We've seen the opposite reaction—zombie kid—when he took Depakote, Lamictal, Clonazepam and Zonegran. If I were a believer, I'd be praying to God that this intermittent mania is reversible. I so desperately want my kid back.

If we're lucky, it won't be more than a few months until Calvin is completely off of his benzodiazepine, clobazam, aka Onfi. He's been taking it for four-and-a-half years and though at first it did a decent job of quelling his seizures, he quickly habituated to it and the seizures returned. Each time they returned we were encouraged to increase his dose and, little by little, it far surpassed what is considered a recommended therapeutic dose, especially for a child.

Calvin has suffered a host of side effects from taking clobazam, most notably dizziness, ataxia (uncoordinated movement and gait disturbances), insomnia, psychomotor hyperactivity, agitation and excessive drooling. I know it because now, at less than half of his highest dose, Calvin shows few signs of these except in the days following a decrease in dose when withdrawal symptoms appear. Unfortunately, these side effects are magnified during a withdrawal and can also include increased seizure activity and even hallucinations.

Thankfully, the two cannabis oils we've been giving Calvin—one high in THCA and one high in CBD—seem to ease the bad side effects of the drugs and their withdrawal while keeping the seizures manageable. With any luck, the cannabis oils will one day allow us to take Calvin off of his Keppra, too, and perhaps be seizure free. That's the plan, anyway. I think it's a good one. In fact, it's the first one I've felt truly good about in all these long years.

If you cannot view the video below you can view it on You Tube here:

snow days, sleazeballs and san francisco scenes

It’s two degrees, having not warmed up since five this morning, and another foot or more of snow is laying itself down on top of at least three feet we’ve gotten in the past week. Besides being frigid outside—the subzero windchill factors don't help—the sidewalk snow and sandy sludge is so craggy and deep in places that when I dare to take Nellie out for a jaunt we must walk in the street. As for Calvin, getting outside is impossible. It’s too cold and he doesn’t have boots. I’ve yet to find a pair that I can get his feet into with his orthotics or that he can manage walking in on the flat hardwood floor much less deep, uneven snow and ice. Yesterday, when a car zoomed past flattening Nellie and I against the snowbank, I kindly signaled the driver, who had a teenage boy as a passenger, to slow down. In response, the clean-cut man wearing an evil little elfish smirk, pantomimed jerking off.

“Pig!” I yelled, and I knew if Michael had been with me the sleazeball wouldn’t have assaulted me in such a way.

I've had my fill of asshole bully drivers who force me over, cut me off, ride my ass, flip me off and think they own the road. Seeing as how Maine doesn't really have a traffic problem, perhaps the bitter winters here exacerbate these losers' baseless rage. Michael was more magnanimous than I, saying that maybe the driver was having a bad day. I figured the guy was very simply a major jerk.

This, for a number of reasons my least favorite time of year in Maine, causes me to pine more than usual for San Francisco where, right about now, things are blooming, like the star jasmine which sends me into a swoon, or the bright red bottle brush, which looks a lot like it sounds, or the bougainvilleas parading their rosy blossoms in a beautiful tangle alongside fences and painted walls. If I were there now, sans Calvin, I might be hiking the hills of Mt. Tamalpais with Dave looking out over a gleaming Pacific or walking under a Tennessee Valley sun thinking of young August, who I never had the pleasure of meeting but whose ashes are there sparkling in the surf. Maybe I'd take the N-Judah out to Ocean Beach by myself or with Heather or Monica, or skinny dip and body surf with Robert and Larry at Baker Beach, or pound a beer or two with Dougie and Pam and maybe even Brook and Mike and Les, before thrifting in my good ole neighborhood, The Haight. Perhaps I’d be shooting the shit in a dive bar with Garzeloni or drowning myself in a North Beach latte topped with a golden heart cast in espresso and foam or chowing down some Chinatown dim sum from a little paper box with a wire handle. Maybe I’d head into The Mission and nosh a piping hot shrimp quesadilla with Alison, then check out her new paintings, which I know are out of this world. Maybe I’d join Doniece for a glass of wine and maybe Sara and Stephanie and Uli and Angela and Lauren and Killian would show up and maybe Sadik, too, and we'd all confer on how to make the world a better place. Perhaps I’d sit amongst the peeling eucalyptus of Golden Gate Park listening to Seth play The Lobster Song on his guitar. Maybe I’d ride a cable car out past my father’s childhood home, over Russian Hill to the wharf, then take a ferry to Sausalito. Maybe I’d go with Gwen to visit Rachel at her groovy shop then listen to live Jazz over bourbon on ice, or just wander the city streets with my camera shooting cool old houses and vistas beyond belief seen from the top of every hill. Whatever I'd do, I'd be missing Michael if he weren't there too.

Instead, I'm with Calvin who is home from school enduring his fourth snow day in a week. The storm is bad enough that we're trapped inside while he goes from spinning in the jumper to bouncing in bed to banging the shutters to mouthing his toys to climbing the stairs to eating his meals and back again, all the while playing Joni Mitchell ad nauseam trying to sooth his savage shrieks, which are as cutting as the chill outside. But at least he hasn't had a daytime tonic-clonic seizure in over five months and at least, as a result, I'm not tense and looking over my shoulder every five minutes, and at least he's happy today and at least spring is closer than it was yesterday and at least the Super Bowl hoo-ha is over and at least the douchebag in the speeding car is already becoming a distant memory, the tracks he laid down now verily plastered with snow.