1.31.2015

snow drifts, spirits and seizures

By the time I finally stepped outside with Nellie it was still snowing and had been all day. The darkness settled in with the stillness, the quiet. We made our way through the narrow sidewalk corridor cut through drifts of snow at least as high as my waist. At Woody’s house, I noticed the driveway hadn’t been plowed, so I went to check on him. When he came to the door I handed him his newspaper and he invited us in and asked if he could get me something.

“Maybe just a finger’s worth of bourbon and one ice cube,” I replied, adding, “I can't stay long.”

Inside Woody’s old summer kitchen, Trixie was splayed out in front of the fire. Nellie came up to her and began licking her ears then seemed to want to munch the scruff of her neck. I scolded Nellie and told her to lay down and be a good girl. She’s still trying to figure out what to do with a docile domestic cat who’s about the size of a squirrel—varmints suitable for chomping. But the two of them kept the peace and laid nicely on the carpet by the fire, their paws barely touching, and I wished I’d had my camera.

Woody and I sat and complained about the snow, which by then was approaching three feet. He assured me his son would come by and plow his driveway soon. A few days earlier, after the big blizzard, I’d checked on Woody whose voice was somewhat hoarse because, as he’d joked, he hadn’t talked to anyone for three days since we'd all been pretty much snowed in.

After a while I downed my bourbon, we hugged goodbye, and I told him I’d see him tomorrow.

On our way to the fields I looked into homes glowing with buttery light not unlike the satisfying burn I had from drinking spirits on an empty stomach. I felt light, happy even, though back at home Calvin, who was amping up to another seizure, was irritable and hadn’t smiled all day. Slowly, we made our way through an invisible ribbon of smoke from someone’s chimney, then past a waft of diesel waste from an idling plow truck, its owner vigorously shoveling Bob and Nan’s drive.

At the fields, Nellie ran free, scooping up mouthfuls of snow as she went, bounding over drifts and spinning happy circles at my feet. I felt relaxed, thankful for the solitude, for my warm jacket and high boots, for the bourbon and for the ability to alter my mind, if only a little.

Back at home, while finishing up dinner, I heard a rhythmic rustling reporting from the baby monitor perched near my head. Knowing what it was, I ran to Calvin’s room.

“Calvin’s having a seizure,” I called to Michael, who came quickly to help undo Calvin’s bed so that we could get to him.

As our boy jerked and twitched we soothed him, stroked his body and kissed his face. It had only been an hour after he’d gotten his evening cannabis oil, one of which, the CBD, I’d increased in light of the seizure I knew was on its way. As the seizure dwindled Michael and I remarked how it was slightly shorter and less convulsive than the last one. I popped downstairs and snatched two ready-made syringes of CBD cannabis oil which I took into bed with our boy.

Next to me, Calvin slept well and with far fewer aftershocks then usual. At 10:45 p.m. and 2:45 a.m. I squirted syringes of oil into Calvin’s mouth. He struggled some, but went right back to sleep, his arms around my neck.

By morning the snow had stopped falling in the bitter cold. Calvin never had a second seizure, which is somewhat remarkable of recent. Even on a tiny dose of CBD oil—a total of 10 mg per day for a fifty-pound kid—it would appear that the cannabis is proving effective, even in the face of a nasty benzodiazepine wean. If we can keep up this rate of reduction he’ll be off of his benzo, clobazam, by May, just as leaves start sprouting from the trees, the ice and snow having long melted, and as the sun begins to nudge dormant buds that I have waited so very long to see.

1.29.2015

batch no. six

Easy as pie. Find the recipe for this THCA cannabis oil for the treatment of medically refractory epilepsy at http://www.epsilonresearch.org/#!free-guide

1.26.2015

hopes and dreams

When I called my brother Scott, who lives in Tucson, another man answered the phone.

“Is that you, David?” I asked, recognizing the voice of my brother’s childhood friend.

The two of them were driving around San Francisco after having had early evening gin and tonics in celebration of their reunion. Scott, in town for work, was visiting David who I think lives in Presidio Heights with his partner Larry. I spoke with David for a long time getting the update on him and on one of my favorite places in the world. At one point in the conversation the two of them drove past my old apartment on the corner of Bush and Powell, and a flood of memories bathed my brain.

“It’s sunny and seventy degrees here,” David told me, “and we went for a long walk at Crissy Field.”
“Here, it’s snowing and almost dark,” I replied, dreading an approaching blizzard.

David reminded me that we were going to do a house swap sometime. He and Larry would come vacation here while Michael, Calvin and I would fly out to San Francisco and stay in their home for a week or two. I told him that was no longer an option.

“Now that we’re treating Calvin’s epilepsy with cannabis, we can’t board a plane to go anywhere,” I said. “Marijuana is still a Schedule I drug. We’d be breaking the law.”

Having said that, I imagined the warmth of Italy, of Brazil, St. John, Portugal, San Francisco, Hawaii—all places I crave to visit again but cannot, at least not with Calvin, and equally impossible for Michael and I to leave him behind.

I went on to tell Scott and David about Calvin’s progress with the cannabis oil. Earlier in the day I’d looked back at past calendars searching for Calvin’s highest clobazam dose and his lowest weight so I could calculate his overall benzodiazepine decrease. In doing so, I learned that we’ve weaned Calvin off of over sixty percent of his clobazam since beginning a homemade THCA cannabis oil last February and having added a CBD cannabis oil in November. I told them how much calmer Calvin is and how he is finally—for the most part—walking by himself after nearly nine years of practice under the influence of myriad dizzying pharmaceuticals.

The next day in the shower, I recounted the phone conversation to Michael. I recalled the months, if not years, of utter mania that Calvin experienced on high doses of three pharmaceuticals, and my comorbid frustration, anger, exhaustion, despair and tears that accompanied it. Recently, I had read a past blog post in which I described spooning nine anticonvulsant pills into Calvin’s mouth after a seizure. I’d seen old photos of Calvin in a stupor, his eyes vacant and half-mast. I’d watched old videos of Calvin screaming at the top of his lungs behind a drugged-up, screwed-up face, his arms flailing, his feet stomping, his fingers snapping and his teeth clenched into a deranged grimace.

“Oh, yeah, I remember it all,” Michael lamented.

I went on to point out to Michael that, in the middle of this benzodiazepine withdrawal, Calvin is having roughly the same number of seizures each month as he did a year ago when he was on sixty percent more benzodiazepine but no cannabis. Now, he is no longer having seizures during the day and hasn’t for over five months. Granted, some of his nighttime seizures are more convulsive, but this could be due to the withdrawal itself. And, thankfully, he is bouncing back from them amazingly well.

I spent the morning after phoning my brother missing him, hoping he’ll come visit and replaying our conversation in my mind. It made me think of Calvin’s neurologist who prescribed his first benzodiazepine, clonazepam (Klonopin) when Calvin was just three years old. I wondered, with so many other drug options, what compelled the man to do it and why did he refuse to recommend taking Calvin off of it considering it wasn't meant for long-term use and considering that I pressed him so hard and so long. I wondered if he was just covering his ass. I knew he didn’t have a child with epilepsy so I doubted if he’d seen—first hand—the destruction that benzos can do to a developing brain, can do to a family, can do to our hopes and dreams.

I thumbed through more old photos of Calvin and dreamed about what kind of a boy he’d be if he had never touched a benzo. I wonder if he’ll ever regain what he has lost, if he’ll ever lose the psychomotor hyperactivity, the irritability, the finger snapping and eye poking and teeth grinding and gastrointestinal upset that I reckon could be caused by the benzos. I wonder if he’ll ever say Mama again, or be able to tell us what hurts, or be able to feed himself, or be rid of the seizures that plague us all.

I worry and wonder, but I also continue to dream, looking to cannabis and hoping, someday soon, we can board a plane and bring our boy back to sunny San Francisco where Calvin's story all began.

April 2011, one of Calvin's many dreadful months

1.22.2015

cannabis, give us calm

I sensed it coming but I didn’t want to believe it. Yesterday, Calvin showed some of his telltale signs of an impeding seizure: warm hands and skin, prickly, raised rash on his chin, few smiles, foamy drool, lots of finger-snapping, head rubbing and a slightly whiny disposition. He even had a bloody nose. All of these expressions gathered into a perfect storm on day eight, leading me to dread the tempest that I felt advancing, and I worried about him as I sat at the sushi bar on an uneven stool visiting with my friend.

At 4:00 a.m. it arrived in all its fury. Its impact thrust my kid into a shriek, like a punch to the solar plexus, followed by quick, sharp waves of spasms. I quickly crawled into Calvin’s bed, rubbed his back, kissed his neck and uncovered his limbs so he could convulse freely without risk of pulling a muscle. His head was banging against the pillow so hard I was consciously grateful that he usually seizes while in bed. Michael brought me one of the prepared syringes of CBD cannabis oil that I keep in the refrigerator for these moments. The seizure, which showed some signs of stopping at three minutes, lingered for several more until finally it quelled enough so that I could squeeze several drops of cannabis oil inside of his cheek with the hope of preventing a second assault.

Assured it was over, Michael and I lifted our boy to the changing table to swap out his swollen diaper, soaked pants and shirt, then spooned him back into bed with me at his side. As Calvin slept I felt the twitch and stretch of his aftershocks, though not nearly as much as in the days before the cannabis. In the dim sepia of the night-lit room my mind reeled:

maybe this is a benzodiazepine withdrawal seizure. is he getting sick again? i knew it was coming. i should have increased his cannabis. it lasted so long. poor little bugger. will this ever end? i wish i could go back to sleep. relax. i hope he doesn’t get a headache. i should have stayed home with him. i wonder what time it is. i hope he grows out of this nightmare. what's with the bloody nose?

Calvin slept until a sliver of dawn began peeking through behind the window shade. He grasped my neck and pulled me close.

"Uh-uh," he peeped—Mama.
"Mama's right here," I replied, "I love you so much, Calvin. You're my sweet boy."

While Michael went down to make coffee I got Calvin up. I could tell he didn't feel good so I gave him two acetaminophen suppositories. We can never really sleep in—any of us. Calvin has to get his seizure medicines every morning around 6:30, perhaps for the rest of his life. That's the way epilepsy rolls: a lifetime of seizures, drugs and their side effects. I am hoping, with luck, a little herb—cannabis—will continue to calm the seas that all too often rage inside Calvin's head. And in my son's embrace, I turn my head to see the empty cannabis syringe with a bit of golden residue. I realize that Calvin only had one seizure and I think: Give us calm. Give us peace. Give us rest. Give us happiness.

photo by Michael Kolster

1.19.2015

rise above

An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity.

—Reverend Dr. Martin Luther King, Jr. 

Saturday, when pulling into my friend’s icy driveway, I saw a large cardboard sign propped in her car’s windshield with the neatly handwritten words, CHALLENGE RACISM. We were headed to the movies to watch The Imitation Game. It wouldn’t have been my choice of movies, but I wanted to spend the evening with Lauren who I hadn’t seen in far too long, so the choice of movie was of little import.

The film was just as I expected: a mediocre period piece based on the true story of a white man—albeit a gay one—written and directed by white men and with a predominantly white male cast. I watched the predictable story unfold, deeply aware that the movie Selma, about the Civil Rights Movement and which I’d preferred to have seen, had, for all intents and purposes, been snubbed by the Academy of Motion Pictures members—no great surprise considering the Academy is 92% white, mostly male, and the average age of its members is 62. Could it be worse than our present congress? I fear, yes.
 

On the drive home we talked about the sign in Lauren's windshield. She told me that every Friday evening she stands with a group of peace activists at the corner of Pleasant and Maine Streets brandishing various signs like the one in her window and others such as BLACK LIVES MATTER. Lauren, who is white, went on to say that often she gets honks and thumbs up from drivers, but that once she was flipped off and sometimes she is heckled. I told her that she should write the word RACIST on the backside of her signs so that she can flip them around in response to the haters' vitriol. But she said she’s usually too shocked to react and even then her impulse is to diffuse the situation peacefully. She's a better person than I.

Nearly forty-seven years ago Rev. Dr. Martin Luther King, Jr. was assassinated in Memphis at the age of thirty-nine. He was a champion of the African American Civil Rights Movement and the Peace movement and his aim was to achieve equality for his people who had been enslaved in this country for centuries and who continued to be literally and figuratively stomped on, pushed aside, held down, beaten up, burned out, fire hosed, strung up and thrown in jail by white people, most of them men. 


Now, in 2015, many things have shamefully gone unchanged. The racial caste system, which originated with slavery, evolved into segregationist Jim Crow law before morphing into the racist lies and ills of the War on Drugs, still exists. Black boys and girls are targeted, punished, suspended and expelled from school at alarming and disproportionate rates compared with whites, even as early as preschool. Black schoolboys and schoolgirls, who are seen as miscreants, are harshly punished, often ending up in juvenile detention centers while their white counterparts get slapped on the wrist. Black boys and men are wrongly stopped and frisked, pulled over, harassed, often falsely accused of petty crimes and/or resisting arrest. They are tasered, gunned down or choked to death by aggressive, racist white cops. The ones who survive are convicted, often falsely, incarcerated and sent to prison to serve ridiculous sentences including—again, at alarming rates—execution. Those who are released are legally discriminated against for the rest of their lives at almost every level of society: housing, education, health care, employment—even one of the only avenues they can take to change the very system that oppresses them: denial of the right to vote. Some, like the author of one of the books I’m reading with the selfsame title, call this systematic oppression The New Jim Crow.

Today, Martin Luther King Day, I think about the ongoing subjugation of black people. And, because of who I am, who I love and who I have become, I also think about the legions of others—disabled people, women, Muslims, gay people, transgender people, immigrants, Hispanics, poor people, Native Americans, homeless people, disabled people—who continue to be marginalized by a society governed predominantly by oligarchs and their greed, selfishness, intolerance, conceit, apathy, contempt, ignorance, self-righteousness, desire to exploit others and
their lust for power

Then, I think about how much better we can do as a nation, as a people, to incite change. If only each and every one of us—millions—could rise above our individual concerns to see the plight of others, then go one step further and courageously, like Martin Luther King, Jr. and Lauren, choose to do something about it, if only through our words.

1.17.2015

clobazam: the sorry truth

The other day Michael and I decided to reinstate Calvin's clobazam wean. We paused it in October to introduce a high CBD cannabis oil to his regimen. The CBD appears to be holding some promise in reducing Calvin's seizures since he recently went 21 days seizure-free, or so we think. That is more than twice as long as usual, of late.

Currently, Calvin is taking 14 mg of clobazam per day, compared with 32.5 mg a year ago—a ridiculously high dose for someone his age and size. A homemade THCA cannabis oil helped us to wean him off of over half of his clobazam over the course of several months. We are committed to getting our boy completely off of the benzodiazepine which, like other pharmaceutical anticonvulsants, we think has caused more harm than good when it comes to Calvin's development and behavior.

Had I been more aware of the adverse effects on Calvin's development and behavior, maybe I'd never have agreed to put Calvin on benzodiazepines in the first place. His first benzo, clonazepam (Klonopin), which he started when he was just three, was meant as a bridge drug to be used for only a few weeks while we increased another drug to a therapeutic level. Regrettably, he was on it for three years, and getting him off of it was a nightmare. His profuse withdrawal seizures were only suppressed by starting him on the drug's relative, clobazam, which he's been on for four-and-a-half years.

I had certainly done my research about the side effects of benzos, but desperate parents look for hope anywhere we can get it, and neurologists downplay the likelihood and seriousness of side effects in favor of the prospect of complete seizure freedom.

Below is the sorry truth about Onfi (clobazam) straight from the drug literature, which shows just a smattering of the drug's total adverse effects. I invite you to scroll. Click on the photos to enlarge.

Clobazam, you're goin' down.