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.

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

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

bright eyes

photo by Michael Kolster

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

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.

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.

two peas in a pod

Tuesday 7:00 a.m.

I’m sitting here in Newark airport sipping coffee during my three-and-a-half hour layover after having taken the red-eye from San Diego. Michael’s phone call came in just before seven a.m., startling me out of a dead sleep that I managed to get with the help of some ear plugs, the puffy jacket Macauley gave me and two padded airport seats facing each other. Calvin had done the dreaded thing and vomited his morning seizure meds, so Michael had redosed them. A few minutes later Michael called telling me he vomited again.

At the exact moment my eighty-five-year-old mother had been ramping up to have another panic attack at home in San Diego, shortly before I kissed her goodbye, my ten-year-old son Calvin was having a seizure back in Maine. Mom managed to dodge the bullet. Calvin was not so fortunate and had a second seizure several hours later, then a third and possibly others.

Back in San Diego I had learned that my mom’s panic episodes have been occurring more frequently, perhaps the result of what we think was a November stroke, perhaps simply because that’s how Alzheimer’s rolls. During these events Mom hyperventilates, seems overly confused about where she is and disturbingly cognizant of her fears. I'm told they happen when she’s had too much stimulation: lots of activity, looking at photos from her past or at pictures on the computer—perhaps even Skypeing. They are heartbreaking to witness. Yesterday, I’d taken her to the park twice for a change of scenery, to get her blood and lungs moving and to keep her body in the best shape possible to avoid a fall. And, since we can’t leave her alone in the car anymore, I’d also taken her into a convenience store to pick up a few supplies. My visit, in and of itself, might have been enough to trigger an attack.

Calvin's seizures are triggered whenever he gets sick, even the common cold can induce them. With the help of two cannabis oils—one CBD, the other THCA—we’d managed to keep the seizures at bay for twenty-one days even though he’s been sick with one virus or another since before the holidays. But his little brain and body finally succumbed to the winter assault, and he crashed last night.

Tuesday Noon

Finally arriving home just before noon, having been shuttled from the airport by Lucretia and her husband and after being smothered with kisses from a very excited Nellie, I enter Calvin’s room just as he is waking. Michael, who is there sitting in the dark with the shades pulled, gives me a warm welcome. He tells me Calvin has been waking, crying, vomiting and falling back to sleep every fifteen minutes since morning. I turn to Calvin and see his eyes rolling up into what looks like a complex partial seizure. Fearing it will turn into a grand mal, and this being at least the third in a cluster, we lift him out of bed and onto his changing table where I give him the Diastat rectal Valium. Slowly, the color seeps back into his lips and pale face, his eyes relax and just before he falls back to sleep I give him his afternoon seizure meds in a spoonful of yogurt. This time, he keeps them down.

It's not quite 10:00 a.m. in San Diego, so Mom is still asleep. She sleeps a lot lately, probably because of all that ramping up mania, like Calvin before a seizure. I slip in next to Calvin as he sleeps and I remain there much of the day while Michael cleans up and walks Nellie in the bitter cold. When I kiss Calvin's head I realize it's the same way my mother kisses me, and I think of how similar they've become. They're like two peas in a pod, I think, my mother and my son, snuggled securely into their little husks of lives—small, sweet, green and alive.

Calvin and Mom, February 2005

essence of my mother

Last night Mom was wired. It was as if she’d taken the wrong medicine, too much of one or none at all. At times she was speaking in full sentences, though not making any sense. I think, perhaps, she was seeing things that I couldn’t see. She was amped, but not unhappy. She’d stitch together a few words, pointing this way and that, clap her hands, punch the air a time or two with a growl, then turn to me and ask, in a semi-coherent way, “Does that make any sense?” At one point she asked me if she was crazy.

“We’re all crazy, Mom, especially him,” as I pointed to my brother Matt. She smiled and laughed in agreement, then squeezed my leg, kissed my cheek and rested her head on my shoulder. Later she turned to me out of the blue and said, “I'm not sure you know what you are doing.” I chuckled, thinking she might be right.

All day long I’d had a nagging headache, perhaps from too much coffee or not enough. I abandoned my evening bourbon hoping that might help but it seemed to make me feel worse. I went to sleep with the chills and woke at midnight sweating. As my head pounded I thought about how Mom must feel at times and wondered if her panic attacks are in any way painful, wondered if they were Alzheimer's-induced or drug-induced. I thought about Calvin and worried about his benzodiazepine withdrawal symptoms, which at some point he’ll have to endure again, and which I imagine include nasty headaches and behavioral changes. I remembered my dad and the pain and nausea he suffered from bone marrow cancer and chemotherapy, and how the morphine stripped him of his essence.

Mom’s essence survives in her tiny, eighty-five-year-old, 115 pound self. Though it is dwindling and sometimes fleeting, I can see it in her eyes, feel it in her embrace, see it in her smile, hear it in her laugh. I'm leaving Mom tonight and, as always, I'm experiencing a mix of emotions. I'll hate to say goodbye knowing it could be the last time I see her, but I'll be relieved to get back to my family and to my usual routine. I'll miss the warmth of San Diego, my long walks along the flowering waterfront, miss sitting next to Mom for hours holding her hand, but I'll be glad to hug Calvin, kiss Michael and take Nellie for long walks in the fields. I'll worry about Mom and Matt and Stacey and wonder when I'll  be able to (somewhat) easily return. But at least I'll have had a handful of days basking in the essence of my mother, knowing that image will be lasting, if not in her then hopefully in me.

pirates of the pacific

I was totally high walking my brother’s dog Sadie home from the store where I picked up some half ‘n’ half for my morning coffee. I hadn’t snarfed Calvin’s cannabis oil. I hadn’t taken a toke from the ganja I smelled as I ambled down the lane between luxurious seaside homes. I hadn’t had my evening shot of bourbon yet. I was simply high, soaking in the warmth of the evening, the glow of twilight, the kindness of strangers, the smells and sounds of San Diego and, most of all, my relative, temporary freedom.

As Sadie and I neared the beach trail we came upon a motley crew of two. Each was probably in his late thirties or early forties and both had mounds of dreadlocks like ropes of kelp sprouting from their heads. The one with heavy beads threaded into his dreads was wearing only shorts and—head to toe—was at least twice as tan as John Boehner. He bent down and greeted Sadie with a kiss then complimented her looks and manner.

“I don’t take any credit,” I said about my brother’s dog, and the scalwags laughed.

The two of them mentioned being sailors, though they looked more like pirates. When I told them I’d come from subzero weather, they said they’d never been to Maine and that if they did their toes would freeze and fall off. The tan one, named Travis, was buff and burly, with a few piercings and an ankle bracelet. He was barefoot and smooth with bright amber eyes and a smile from here to Hawaii, where it looked like he might’ve spent some time. They were in town stocking up on provisions and were two of the most kind, chill humans I’d met in a long while. They invited me to party with them on their boat, the one with the blue hull flying the Jolly Roger. I told them that I would if I could but that I had to get home to help my brother take care of my mom. I went on to say that I had some bourbon at home and I’d be thinking of them. They really wanted me to join them, and I really wanted to accept.

“Ciao,” I said as we parted, and flashed them a smile and a peace sign as they strolled down the street.
“So nice talking with you,” they called with cupped hands, and I was tempted to turn and join them.

Shortly before I’d met the men I’d told Michael on the phone about a caustic email I’d received earlier in the day. It was from an elderly acquaintance who has been subscribed to my blog for some time. He’d been deeply offended by the video I’d posted on New Year’s Day, the one in which Michael is hugging and kissing Calvin into a fit of giggles. Partway through the video Michael jokingly flips me the bird. The acquaintance wrote in response:

It has been a week or so since I opened what so far ranks as the worst email of 2015. With apologies to Calvin, not his fault, certainly. Only the poor taste of his parents. Please just unsubscribe me from your list.

I felt compelled to respond to the email:

michael’s gesture was nothing more than a lark, for my benefit, and it made me chuckle. things like that can add levity to our chronically stressful situation when often little else does. but i guess i shouldn’t expect some people with limited experience in our kind of world to understand our complex situation, to empathize and rise above the petty to see the deepness of human experience. “poor taste of his parents”? i guess you just don’t know me, but then again, why should you?

It was my pleasure to unsubscribe the man.

After leaving my pirate friends I scoured the marina for the boat with the Jolly Roger, just to see it. I’d have jumped at the chance to join them if it weren’t for my mother and for the fact that I’m tired as hell. I wasn’t the least bit afraid. Though I didn’t know them from Adam, these were good people—I’d go so far as to say loving, full of kindness, openness, selflessness and lack of judgment, the kind of folks this world could use a few more of.

parallels

I’d just returned from walking my brother's dog Sadie along a narrow strip of beach skirting San Diego Harbor when Mom arrived home with her caretaker Stephanie after their usual drive around town.

“She’s having one of those again,” Steph said, as she helped my mom out of the car.

I opened the courtyard gate to see the shell of my mother pale and trembling with a fretful look on her face. Gesturing to Steph, Mom said in a worried, feeble voice, “Thank God for this woman. She takes such good care of me.”

I wrapped my arms tightly around Mom while Steph went to get a pill, then I helped her down the steps into the courtyard over to the bench so she could sit, and when she did she kissed my hands all over and thanked me profusely for taking care of her.

“I want to go,” she said in a panic, and I wondered, where? “Will someone please take me home?”
“You are home, Mom,” I assured her.
“How do you know?” she asked, and I wasn’t quite sure how to answer but by saying, “you are right here with me.”

We sat for a bit, Mom hyperventilating and shivering in my embrace. She’s so small, I thought, half thinking that she'd melt into nothing right then and there. I wanted to cry, never really having seen her in quite a state and remembering, when she'd first been diagnosed, she had made it clear that she never wanted to get to this point.

Steph brought a pill meant to calm her, which I put on Mom's tongue like I do for Calvin at times, and she chased it with a big gulp of water. My cell phone rang in my back pocket. It was Calvin’s nurse Beth calling from home. I had to take the call but I hesitated letting go of my mom.

For the next ten minutes Beth and I discussed Calvin's telltale signs of an impending seizure. He had woken at 3:30 am and had never gone back to sleep. He hadn’t had regular bowel movements for days, had developed a rash on his chin, was hyper in the bath, had a runny nose and was stuck in a finger-snapping trance. At times I could hear him shrieking in the background. Beth wanted to know what to do about his bedtime cannabis oil. Together we mulled it over, taking into account his relatively low dose of CBD (cannabidiol) along with the fact that we’d just increased it five drops last Monday under similar circumstances.

“Michael thinks he’s amping up, too” she added.
“Well, if we increase it by only five drops and he has a seizure tonight, we’ll want to increase it five more tomorrow. So maybe it's better to increase it by ten drops tonight in hopes of thwarting a seizure. It can't hurt him,” I added.

After hanging up with Beth I joined Steph and my mom back in the kitchen. Mom had calmed down some and was eating. The pill seemed to be working.

“I can see them coming,” Steph said, explaining that when Mom doesn’t nap during car rides, she often ends up having an episode.
“It’s the same with Calvin,” I replied, describing how when Calvin wakes early and doesn’t go back to sleep he almost always has a seizure the next night or morning.
“So many parallels between them,” I added.

Stephanie left for the day and I put Mom down for a nap. Tucking her in I gazed at her watery brown eyes which, like everything else about her, look smaller to me now.

"There's my baby," she said with a smile.
"You know who I am," I told her, aware that she couldn't recall my name.

After her nap we took a drive to Shelter Island for a walk in the park at dusk. Though beautiful, the trees there are knotted and tangled reminding me a bit of my mother's brain, of Calvin's brain. Mom shuffled along as I held her hand and elbow. I thought about my neighbor friends Woody, 81, and Mike, 92, back at home and marveled at how aged Mom is compared with them. Darkness quickly fell around us and we found a bench at the water's edge and snuggled in like two lovers against the chill. We were mostly alone in the park when a man wearing a hoodie hobbled past tapping a white cane against the path. I greeted him as he approached.

“So cozy,” he said in a happy Jamaican accent, “I can see.”
“Do you know him?” Mom asked in a moment of clarity.
“No, he's just a nice man passing by.”

Back at home Matt and I tag-teamed with mom during dinner then helped her get ready for bed, not unlike Michael and I do with Calvin. So, too, Matt encourages Mom to do as much as possible by herself, even when simple things like washing her hands or getting undressed can sometimes be difficult or confusing. After we got Mom settled, after I stroked her head and told her that I loved her, I gave Matt a hug goodnight and thanked him for taking such good care of Mom.

“I don't know how you do it, Matt,” then I paused for a second and added, “well, actually, I guess I do.”

san diego sunrise

Last night, at 10:00 pm, I took a cab from the San Diego airport to my brother Matt’s house where I was greeted with a hug and then a smooch from his dog Sadie. My brother’s wife, Stacey, is visiting her sister in the Seattle area while I help Matt with my eighty-five-year-old mom who has Alzheimer's. After a brief chat with my brother I lugged my bags to the upstairs guest room. There, on the dresser, was a care package that Stacey had left me. It included a card wishing me respite, a bottle of seven-year-old bourbon and a crystal glass with which to drink it, a miniature pewter motorcycle tied with twine and slung around the bottle’s neck, a bar of caramel and sea salt chocolate and a silly book called Stuff White People Like. My sister-in-law definitely gets me.

This morning, after a restful night, and as the sun rose over San Diego Harbor, I thumbed through the book, at times chuckling over the author’s satirical list of 150 things that white people like. Here are some of my favorites:

Standing still at concerts
Religions their parents don’t belong to
Farmer’s markets
Wes Anderson films
Asian girls
Yoga
Marijuana
Having two last names
Gentrification
Renovations
Knowing what’s best for poor people
Bottles of water
Multilingual children
The idea of soccer
Music piracy
Scarves
Premium juice
Public transportation that is not a bus
Rock climbing
Gifted children
Acoustic covers
Plaid

After flipping through its pages I realized the book might have been better titled Stuff White Yuppies Like. Still, it made me laugh at myself and at the absurdity of it all—that being the truth. At the end of the book is a score sheet labeled How White Are You? My score was a mere thirty-four percent. Praise the Lord.

As the sky began to brighten I stepped outside on the balcony with my camera. A foghorn sighed in the distance making me pine for my former home, San Francisco, which I haven't visited for nine years. Watching the sun come up I imagined my mother snoozing in a downstairs bedroom and wondered if she'd recognize me. I hoped my brother was doing okay and relished my sister-in-law's kind gesture. I felt a headache coming on in the absence of caffeine and wondered if Calvin had had a seizure last night. I toyed with the idea of eating the chocolate bar for breakfast, regretted not having been able to get the bottle of bourbon open last night, then considered going back to sleep just as the sun cleared the horizon, like a big bald head.

this morning's sunrise over San Diego harbor

leaving on a jet plane

Today I am headed west to visit my eighty-five-year-old mother in San Diego where she lives with my brother and sister-in-law. For the past several years I've traveled to see her every six to twelve months, and each time I am torn about going. On the one hand, I miss my mom, who is dissolving by degrees in the grips of Alzheimer's and whose essence I hope I'll still find. I miss California and the Pacific and the warmth of the West and I miss having even the slightest bit of respite from the daily grind here at home. On the other hand, I'm going to miss these guys. In fact, I already do. I'll miss Michael's jokes and his quick-to-forgiveness, miss his embrace, miss his handsome face. I'll miss watching Nellie frolic in the snow, miss those big brown puppy-dog eyes and soft, fluffy hair. I'll miss Calvin's hugs and giggles and the way he likes to sit on my lap now after so many years of being too hyper to do so.

But I won't miss the Maine winter, its ice and snow and subzero temperatures, won't miss cleaning up messy diapers full of oozing poop that sometimes, somehow, gets smeared all over Calvin's entire back and down his thighs. I won't miss Calvin's drooling, and his teeth-grinding, eye-poking, slipper-biting, carpet-munching, hyper-coughing, whiny-ass self. I won't miss waking up all through the night or the ungodly morning hours, the chopping up of Calvin's food into tiny pieces, the obsessing about seizures and all things Calvin or my grumpy-ass mood, which I hope to abandon on some sunny beach or grassy seaside park.

As I put Calvin on the bus this morning, in minus-nine-degree weather, I gave him a big kiss and got a bit teary eyed.

"Bye Calvin, I love you," I said as always, then added, "I'm so proud of you, sweetie."

As the bus pulled away I watched Calvin pat the window, completely oblivious to my lingering. A twinge of sadness came over me in knowing that my boy has no idea I am leaving, that I won't be there when he gets home or when he wakes up tomorrow morning. There's a hollowness in that knowing, one that never can be filled.

Yep, I'm leaving on a jet plane in a few hours, heading toward blue skies, sixty-degree weather, sandy beaches, restful nights, late mornings, mom's embrace and quiet. Here, it has warmed up to minus-three degrees, so I guess it's time to take Nellie for a walk before I begin to pack my t-shirts, jeans, tennies and flip-flops, and a photo of Calvin that I'll keep as a bookmark and gaze upon, often, with longing.

brightening

Today is day fourteen—two weeks since Calvin’s last perceived seizure—his longest seizure-free stint since July. It is possible that we could’ve slept through one—his unmistakable seizures now occurring exclusively at night—though I generally sleep lightly with the baby monitor alerting me from the bedstand near my head.

I’d felt a seizure approaching a week ago—seen Calvin’s hysteria, lunacy, mania or whatever you want to call it, seen his finger snapping, endured his incessant screeching, felt his intensity and the pounding of his heart in his chest—so I did something different: I prophylactically increased his CBD (cannabidiol) cannabis oil at bedtime that night. The seizure never materialized.

At a slightly higher dose of CBD, albeit still a tiny one at only 4 milligrams per day or approximately 1.7 mg per kilogram of his weight, Calvin has been sleeping more soundly, waking up slightly later, walking somewhat better, finger-snapping less and smiling more. My hope is that if he can go one month seizure free I’ll consider reinstating his benzodiazepine wean; we are committed to getting him off of the clobazam even if we have to suffer through some extra withdrawal seizures and other temporary symptoms.

From what I’ve read, other children with intractable epilepsy are taking as much as sixty times the amount of CBD that Calvin is on. We bucked the Colorado trend of giving large doses of CBD and are starting low and slow with an oil that has a mere 4 mg of CBD per milliliter compared with others that are between 50 and 200 mgs of CBD per milliliter of oil. Even the children taking the pharmaceutical form of CBD, a drug in trial called Epidiolex, are taking as much as 10 to 20 mgs per kilogram of their weight. Granted, Calvin has not suffered a life-threatening seizure or series of seizures for years while many of these kids have hundreds of seizures every month, every week—some every day—so we have the relative luxury of taking it slow without worrying too much that he might expire.

Today also marks day one-hundred-twenty-three—Calvin has gone over four months without a daytime tonic-clonic (grand mal) seizure and has had less than a handful of brief partial seizures in that time. I attribute that daytime seizure freedom to the months of therapy on a homemade THCA cannabis oil which, since I’ve been giving it to Calvin since February, has also allowed us to safely wean Calvin off of over half of his benzodiazepine without a rash of additional seizures.

In a nutshell, I think the cannabis is effing working. Calvin is going as long, if not longer, between seizures as he was a year ago when he was taking twice as much benzodiazepine. For the most part, he is walking safely and independently without use of a harness. He is beginning to use a spoon again to feed himself, though he’s got a long, long way to go before he is proficient. He’ll be turning eleven in a month’s time, and even though he isn’t playing hockey or reading books or walking Nellie or having sleepovers or drawing pictures or building snowmen or playing an instrument or writing poems like his peers are doing, he’s alive and mostly happy. We see him progressing by degrees. And his smile, his gaze and his countenance seem to be brightening with each passing day, like the sun in the winter sky headed for spring.

Calvin and his former nurse, Barbara

respite

dear matt and stacey,

i’m looking forward to seeing the two of you and mom. it has been far too long since my last visit but as you might imagine it is hard for me to get away.

i am writing to tell you that i am not going to offer to sleep in mom’s room—to help her get up in the night—the weekend i am visiting like i have done during my last several visits. i want to explain and i hope, and believe, you will understand.

although calvin’s daytime seizures have been at bay for several months, they have migrated to the nighttime. the past few months we have observed calvin having grand mal seizures in the middle of the night every five to nine days on average. recently, calvin had four seizures in one night. on the nights when he does not have seizures he is often restless and sometimes wakes at 3:30 or 4:00 am and doesn’t go back to sleep. on those nights i am up every thirty to sixty minutes tending to him and often i don’t go back to sleep when he wakes early.

this chronic sleep deprivation is nearly impossible to remedy and it has been my reality for most of calvin’s life with little to no respite. besides a weekend trip to new york five years ago, since then the only time i’ve taken away from calvin is to visit you and mom (and sometimes seti during the same trip) and to attend my class reunion in seattle. these are the only times i get decent, uninterrupted sleep. it is taking its toll on me and i see no end in sight.

i am fairly sure that the two of you don’t get much respite away from mom, either, at least not as a couple. this is why i think you will understand why i am hoping to spend my visit with mom and you as a kind of respite—a rare one. i have no other plans but to focus on mom and you during my stay.

hope all is well. see you thursday night january 8th around 10:30 pm. let me know if one of you will be awake or if you want to hide a key for me to get in.

love,
christy

Mom, March 2013

happy new year (video)

Hoping that 2015 has more of this and less of the alternative. Oh, and sorry in advance for the bird.