sunday

Sundays I love and I loathe. I love them because we usually spend them together as a family, even though we do mindless shit like grocery shopping and going for long car rides, because what else is there to do with a kid like Calvin who can’t do much of anything but a bit of walking, a bit of sitting and a lot of eating these days. I loathe them because Calvin can be a lot of work and Sundays are the days when he is not in school or under the care of a nurse making Sundays feel inordinately and exasperatingly loooooooooooooong.

Yesterday—Sunday—I woke far too early in a thick, black, dreary funk. I tried to take a much needed late morning nap with Michael, yet couldn't sleep, sending me deeper into my despair. The shower didn’t help lift my spirits, nor did the caffeine or the leftover piece of chocolate buche de noel. I was teary and irritable all morning.

“What do you want to do today?” Michael asked, his voice buoyant hoping to cheer me up.
“What I want to do we can’t do,” I groused, explaining that I simply wanted to be able to go to the movies as a family.
“If only we could get Calvin to sit still and watch a film,” I lamented, “things would be so much easier.”

Calvin sat on Michael’s lap drooling profusely and eating cut-up pieces of sandwich, cut-up pieces of breakfast sausage and cut-up pieces of fruit. Every few minutes he’d wiggle his way out of Michael’s grasp to do his usual laps around the house only to return a few minutes later to bang on the table wanting more food.  

“I miss San Francisco,” I whined, folding a few pieces from a mound of clean laundry made up mostly of Calvin's bibs, rags and kerchiefs.
“You miss not having a kid,” Michael said.

The night before I’d dreamed of being back in San Francisco, of roaming the streets and getting lost, of the sun baking my shoulders, of the beach, of the hills, of being independent and I knew, to a great extent, Michael was right. I did miss not having a kid, especially one like Calvin who, though he is ten, has been like a baby for years and will likely be a physically, emotionally and intellectually disabled toddler-of-sorts for the rest of his life.

“Lets go for a long car ride,” Michael finally insisted. So we packed everyone into the car, including Nellie, and Michael took us for a drive. I brought the diapers and the wipes and several bibs, rags and kerchiefs and an extra pair of pants and a shirt for Calvin in case of a blowout. I brought the cut-up pieces of food and some yogurt and cannabis oil and a spoon and a spatula and the vial of rectal Valium which we don’t go anywhere without.

Under a low sky we wound along roads passing stately brick houses, modest mobile homes and a half-burnt two-story that looked inhabited. The open fields flanking the road had melted into a grassy bronze reminding me of the Tanzanian tundra. We cut through soggy bogs where the silver stumps of dead trees rose from the marsh like tombstones in a watery graveyard. After thirty minutes or so Michael slowed then pulled into an icy drive on the left beside a sign that read, Caesar Pond.

“Don’t drive down there,” I cautioned, fearing getting stuck in the ice or of careening into a ditch.

Michael parked at the top and walked Nellie down the road to the pond while I stayed behind feeding Calvin. A few minutes later when they returned, Michael encouraged me.

“It’s really beautiful,” he said, “You should go.”

So, I took Nellie walking gingerly between sheets of ice and muddy ruts. At the base of the hill where the ice had melted I found the pond sleeping, a layer of mist hugging its edges. A raven cawed from atop some craggy branch watching Nellie race around excitedly following her nose. There, in what felt like the middle of nowhere, it was quiet, serene and beautiful and I wished somehow I could stay longer.

Back at the car I slipped in next to Michael this time and, thinking of the pond and releasing my sorrows, I teared up.

“I knew you’d like it,” Michael said, grabbing my hand and smiling into my eyes.
“Thank you,” I said, and kissed him, then we slowly made our way back home where we built a fire, put on some music, folded more laundry, changed a few diapers, gave Calvin a bath, fed him and then ourselves before going to bed early and dreaming, to some extent, of another life.

photo by Michael Kolster

boxing day blue, barbara and my boy

Under a beautiful blue Boxing Day sky I watched, filmed and applauded as Calvin and his nurse, Barbara, made their way home after a long walk to the fields where Calvin meandered unassisted on the AstroTurf, something he has done a handful of times since starting his THCA cannabis oil therapy and since gradually cutting his benzodiazepine dose in half.

Hopefully soon, with the recent addition of some CBD cannabis oil, we will begin to see a reduction in his nighttime seizures allowing us to further reduce his benzo before eliminating it completely.

Wishing that 2015 will be a stellar year for my boy.

celebrations

It’s the time of year for family gatherings. The family that I used to spend Christmases with as a girl is scattered, some gone. My father succumbed to cancer nearly nineteen years ago. My eighty-five-year-old mother is lost in dementia. Years ago, one of my brothers estranged himself from the rest of the family. Another brother, whose sons are grown, has escaped the damp Seattle-Tacoma weather where I grew up to enjoy the drier climate of Montana. My sister and her husband recently moved from San Diego to Connecticut to be near his family. One brother still lives with his wife and daughter in Tucson and my fourth brother lives with his wife in San Diego where they take care of my mother.

Memories of Christmases past are distant and yet still clear: the midnight masses; the enormous Christmas trees that towered above me in our living room; the bright lights and tinsel that put me in a trance; the essence of hot apple cider; cutting snowflakes out of white paper; trimming the tree; wrapping gifts; hoping for a white Christmas that rarely came; waking up early; my dad goofing off while we unwrapped presents; hand drawing greeting cards for 150 of my closest friends; watching Rudolf and Charlie Brown’s Christmas specials; Roaring fires; The joy of getting what I wanted and the bummer of not.

With my new family, what I cherish most during this time of year is simply being together. Michael is buzzing around in the kitchen dry-brining a crown pork roast for tomorrow’s guests, making homemade eggnog with bourbon, chopping, dicing and sautéing vegetables, slicing potatoes and celery root, stirring a homemade ganache on the stove top to pour over ice cream later after devouring an herb-crusted rack of lamb, listening to music, relaxing in front of a fire.

Calvin happily spins in his jumper, at times poking his eye, at others giggling for no apparent reason. Today is day three so he is mostly content and quiet and I can get a tiny bit of writing done. He’s having seizures every eight or nine days lately—only at night—so he might make it through to the new year before his next one, perhaps longer if the CBD cannabis oil works better at a slightly higher dose. Nellie is curled up on her bed sleeping or sitting at the French doors fixated on squirrels.

Friends ask if we are going anywhere for the holidays. I tell them that we can’t board a plane with Calvin as long as he is taking cannabis oil for his epilepsy or unless the Feds take cannabis off of the list of schedule I drugs or legalize medical marijuana all together. Even if we drove across state lines with Calvin and his medicine we’d be breaking the law. Because of that and because Calvin is difficult to take anywhere without his special bed and without his industrial-sized johnny-jump-up, we stay put.

Tomorrow we’ll be hosting a few of our favorite misfits who, like us, don’t have family nearby, just like many of the guests my parents used to include for Christmas dinner when I was a kid. As far as I know, most of our guests, like us, don’t follow Christian doctrine, some of us don’t believe in God other than in the nature that surrounds us.

Today, it is dark and rainy outside just like most of the Christmases I remember from my childhood. I don’t miss the pomp and circumstance, I don’t miss the presents, the throngs of shoppers, the ridiculous materialism that has engulfed the holidays and caused so many to feel stressed or unprepared or overwhelmed. I don’t miss going to church and listening to priests. I do miss my dad and my mom, but they are here with me in the traditions we have chosen to carry on, which is to gather with friends, to share food and drink, to love, to laugh our asses off and to celebrate the advent of winter light.

anatomy of a greeting part ii

“Happy Holidays, eh?” my gynecologist said with a smirk as she walked through the door to find me wrapped up in a flimsy gown perched at the edge of the examination table thumbing an equally flimsy tabloid. She was referring to the fact that, just minutes earlier and within earshot of her, I had thanked the nurse for the greeting she'd given me rather than being wished a Merry Christmas, even though I understand and appreciate the sentiment.

My doc went on to admit that she wishes everyone a Merry Christmas, even her Jewish colleagues, because in her mind everyone celebrates Christmas.

“It's a secular holiday,” she insisted, pointing to its roots in pagan tradition, and while I agreed that the December holy day likely spawned from celebrations of the solstice, it remains a Christian observance at heart. When I expressed my slight disfavor of the default Christmas greeting she offered me a snarky, "Happy Kwanzaa!"

“So, don’t you buy presents or decorate?” she asked, somewhat incredulously. Without explaining my non-Christian beliefs, I told her, no not really, though I admitted in the past having decorated a tree from time to time, that I strung a few lights this year (more in honor of the solstice), and that we traditionally cook a nice meal on Christmas day just to feel—

“Included?” She said, finishing my sentence with a word I may or may not have chosen.

“I’m not going to change what I say because I might offend someone,” she retorted. I countered with the complete opposite argument underscoring my great desire—in the charitable spirit of the season—not to ostracize anyone.

Our volley was cordial, though beneath the gown my heart was pounding and I had to focus hard on regaining control over my nervously shaking legs, which by now were in the stirrups. To concede something in our debate, I cited my penchant for political correctness as the basis for my liberal stance. She expressed her disdain for political correctness telling me that my chosen greeting of Happy Holidays, was "bland."

“Bland?” I asked. “Perhaps insensitive,” I said after a hmmmm, and I told her I’d have to think about that one.

She hugged me before exiting and wished me Happy Holidays. Then I bid her a Merry Christmas, and we chuckled.

Over the next couple of days I did think about it—a lot. If I know for sure someone celebrates Christamas, I do wish them a merry one. But is wishing someone Happy Holidays bland? I asked myself. Or, is issuing a greeting like Merry Christmas—one that ignores all other belief systems—the true whitewashing, the real milk toast? Can we really assume everyone celebrates Christmas? No, we can't. We shouldn't. Doesn't the richness and spice come in acknowledging all of the different ways people celebrate the season—Jews, Buddhists, Christians, Muslims, Africans, Hindus, Pantheists—in one inclusive greeting such as Happy Holidays, a greeting that has been around for at least a century?

The next evening, over pizza and bourbon, I discussed my encounter with my dear friend, Barbara. She concurred, adding that if a person has never been in a position to be hurt or slighted, marginalized or maligned, it’s easy to think that their words are innocuous, such as members of the majority—in this part of the world, white Christians—most who have never had to deal with the pain, isolation, discrimination and oppression of being “other.”

"Does your doctor know about Calvin?" asked Barbara. I told her that, yes, she knows I have a disabled child with epilepsy, but because she didn't deliver Calvin and hasn't been following his progress, she likely doesn't know the extent of his disability: that though he is ten he has serious cognitive deficits, can't talk or read or write or use the toilet and is only recently beginning to do some independent walking. What I didn't tell my doctor during that conversation was, though Michael and I don't believe in Christian doctrine, one of the primary reasons I refrain from trimming a tree, why I don't buy gifts and decorate the house, is because Calvin is completely oblivious to Christmas and Santa and gifts. And so making merry over Christmas tidings and trimmings leaves a lump of coal in my throat for the joys we cannot fully partake in because we cannot delight in them with our child.

So again, our little Calvin helps me see our small world as a much bigger place, one that is not bland, but is brimming with rich and diverse traditions, beliefs, dogma and lore that I want to celebrate, embrace and acknowledge in the best way I know how, which is to make an effort to include everyone in my chosen greeting, be it Happy Holidays, Merry Happy or Happy Ho Ho. That way, I push no one into the margins, a place I know can be isolating, lonely and cold.

solstice

Thankful that the days will once again begin to lengthen.

photo by Michael Kolster

letting go

Except for a glimmer of hope when Calvin was almost three—before the debilitating, multiple antiepileptic drug cocktails and the regular tonic-clonic (grand mal) seizures—I've never been quite sure the day would come when Calvin would be walking more often without assistance than with it.

Thanks to cannabis for allowing Calvin to cut his benzodiazepine dose in half and for Mary, his awesome one-on-one, who first saw his latent potential for walking independently re-emerge, and for trusting it. In great part because of them we can finally take a deep breath and, even if just a little, start letting go.

Calvin at school the other day with his best buddy, Mary

our five percent boy, cbd and the dosing dilemma

Shortly before Calvin’s birth, sometime around the wretched, nightmarish 33rd week of my pregnancy, the neonatologists who helped decide when to take him—by scheduled c-section—told me and Michael that only five percent of babies born at 35 weeks need help breathing. We were encouraged. But shortly after Calvin was born he required surfactant for his lungs to properly inflate before being put on a respirator for sixteen hours during the first day of his life, and then on a CPAP (continuous positive airway pressure) for several more days. Since then, we have called Calvin our five-percent boy.

It has seemed that any time we learn there is a rare chance of succumbing to some affliction, Calvin does. Besides a host of neurological deficits, including being legally blind times five and suffering intractable epilepsy since the age of two, Calvin has never learned to talk, he’s had double ear infections, pneumonia, bronchitis, reflux, slow gastric emptying, urinary tract infections, roseola, two kinds of hernias, a broken tooth, scoliosis and a laundry list of side effects from anticonvulsant drugs—including dangerously high liver functions—which, at high doses, still don’t seem to stem his seizures. I imagine that many of these afflictions are suffered by more than five percent of the population, but as we’ve raised Calvin it sometimes feels like we just can’t catch a break. If it's not one thing, it's another. I keep hoping that the five-percent theory will work in his favor for once, perhaps with cannabis.

The other day we switched Calvin from a very dilute CBD (cannabidiol) cannabis oil to a slightly stronger one made by our local dispensary, augmenting the homemade THCA oil I’ve been giving him since last February, which has gradually helped him cut his benzodiazepine dose in half. Though stronger, this CBD oil has a mere four mgs of CBD in one milliliter of oil. To compare, Charlotte’s Web, the CBD oil many seizure-racked children in Colorado and California are benefiting from, ranges from 50 to 200 mgs per milliliter. Another way of looking at it is dosing. We started Calvin on 0.1 mg of CBD per kilogram of his weight, or slightly over 2 mg of CBD per day. One child I know of who is Calvin's size is taking 5.5 mgs of Charlotte’s Web per kilogram of her weight, or 125 mgs CBD per day—nearly sixty times the amount that Calvin is starting on! Luckily, she was gradually able to come off of all of her pharmaceuticals, though not without hardship.

You can see we are starting very, very cautiously, at the lowest effective dose that our beloved Dr. Dustin Sulak has seen. This “less is more” theory has been backed by the creator of the THCA oil recipe I’ve been giving Calvin, and it makes a lot of sense to me. Whether we’ll actually see results at very low doses is another thing because Calvin, unlike a lot of other children (probably 95 percent of them) seems to require unusually high doses of medications to get any palpable results.

One advantage I see in starting low is the reduced chance of any serious side effects from CBD’s interaction with Calvin’s other anticonvulsant drugs. The other advantage is finding a sweet spot of seizure control without using excessive amounts of cannabis which, in turn, equates to excessive amounts of cash since it isn’t covered by insurance. I suppose the converse would be to hit Calvin with a huge dose of CBD hoping to knock the seizures out, and then scale back on the dose if possible. If Calvin weren’t taking two other anticonvulsants I might consider that strategy, but the sorry truth is that he is, so we are stuck in the slow lane.

So, I am crossing my fingers hoping that, if there is even a mere five-percent chance that this low dose of high CBD oil can reduce or even stop Calvin's seizures, it will. Luckily, we've got plenty of room to move up.

jar of high cbd cannabis oil

because

Saturday, mostly because of chronic sleep deprivation, I felt exhausted, but I had to push through it to prepare for an intimate holiday gathering for some of our closest friends and neighbors. Because of Calvin’s hysteria I dreaded a seizure. Because our beloved nurse Barbara gave her two-week notice shortly after she walked through the door I fell deeper into the grips of angst and sorrow. But because of a long list of simple delights—not including the seizure Calvin did indeed have during the party—I managed to lie awake for hours next to him listening to the music throb downstairs and to voices of our friends mingling and just be grateful . . .

. . . because madeleine’s magnificent ways. because kim’s compassion. because jeff’s funny tale about dog shit on his shoes. because michael’s holiday cookies. because john’s charming smile. because keisha’s bodaciousness. because teresa’s honest beauty. because stefanie’s guacamole and rustic chips. because jane’s simple sweetness. because fabian’s lesson on single malt scotch. because bridget’s candles, and titus too. because catherine’s christmas cookies. because bill's good nature. because seventies songs. because leah’s lushness. because alex’s relaxedness. because jill’s gravid belly. because tricia’s aura. because dewitt’s charm. because adrian's christmas sweater. because henry’s hulking hugs. because tim’s kindliness. because brian crashed that party so many years ago. because peter, what more can i say? because candlelight. because megan’s simple beauty. because barbara’s ravishing red dress and loveliness. because m&ms. because nellie. because joanne’s joviality. because sarah’s bright eyes. because mary’s sequins skirt. because backyard bonfires. because stephen’s chivalry. because jen’s generous warmth. because accra’s prosecco. because mark’s compassion. because bourbon on ice. because brian’s way too easy hard cider. because kevin’s esprit. because jackie's curls. because vlad, just vlad. because ta’s arrival. because laura’s luminosity. because david’s nutty nature. because somebody's badass brownies. because connie’s cheerfulness. because mustard. because martin’s wit. because matt’s bromance. because karen’s spirit. because kathy and her fuzzy sweater. because spiral cut hams. because barbara. because jen’s brains and beauty. because michael’s heart. because lauren’s tenderness and patience with me, michael and calvin. because calvin and climbing into bed next to him. because new friends, including jens, and old friends and friends who, most regrettably and quite inadvertently, were left off of our guest list. sorry.

. . . because cannabis, and because calvin didn't have a second seizure and seemed to wake up feeling okay.

foreboding:

the awful feeling that it is coming tonight and there is nothing that I can do to stop it.

the quality of cannabis

This morning I read a report about cannabis and its affects on childhood epilepsy. The findings appeared mixed, though I felt as though its authors were trying to play down cannabis’s efficacy while highlighting possible, yet undetermined, downsides such as liver problems and effects on brain development, (as if those aren't two detrimental consequences of many, if not most, antiepileptic pharmaceutical drugs.)

As I prepared Calvin’s lunch, an ice storm brewing outside, I wondered if over time Calvin might begin to have trouble with his liver because of the cannabis oils.

“It wouldn’t be the first time,” my husband reminded me.

No. It wouldn't. The first time we saw initial indications of liver problems was when Calvin was just three years old. He’d been taking Depakote, the third anticonvulsant he’d been prescribed within a year of being diagnosed with epilepsy. Depakote wasn’t working to control Calvin’s seizures, though it was doing a great job of sedating him and robbing him of skills he had just begun to learn. While in the hospital after a bout of status epilepticus his neurologist informed us that he was switching Calvin to a new drug, one called Lamictal. But because it would take several weeks to safely titrate to a therapeutic level of Lamictal in order to avoid serious, if not lethal, cases of toxic epidermal necrolysis or Stevens-Johnson syndrome, Calvin had to temporarily remain on Depakote.

The neurologist ordered a Depakote blood level. I asked the phlebotomist if they were also going to test Calvin’s liver enzymes, aware that Depakote was known for wreaking havoc on the livers of kids like Calvin. She told me, no, that the doctor hadn’t ordered them. I insisted she take them because Calvin was a hard stick—difficult to draw blood from easily and painlessly—and I didn’t want them to later require a second blood draw. She relented and took the levels, which came back ten times higher than the normal range, indicating impending trouble. The doctor had no choice but to take Calvin off of Depakote immediately, replacing it with two additional drugs—one, a benzodiazepine related to Valium.

As freezing rain glazed the streets and sidewalks outside varnishing bows and branches with ice, I continued to think about the cannabis. Since having started Calvin on a second oil a month ago, one high in CBD and CBDA, he seems to be happier, calmer and more alert, even sleeping slightly better at night. These are the same kinds of improvements we saw last spring almost immediately after starting him on a cannabis oil high in THCA, which he is still taking. It’s too early to tell if the new oil is lessening his nighttime seizures since, in the past several months, he has them only every six to nine days. But I am cautiously optimistic since I am seeing other improvements, like less self-stimming such as finger snapping and eye poking and reduced mania in the days leading up to a seizure. Luckily, Calvin is on a very small dose so there is lots of room to move.

I talked with Michael further about cannabis’s unknowns, and wondered how I would feel if Calvin died from liver failure if it were the result of giving him cannabis oil, (though it can as easily happen because of the benzodiazepine he was prescribed years ago.)

“He has seemed so much happier lately,” I remarked while watching Calvin spin in his johnny-jump-up mouthing his blue football with abandon, “and he seems to have an improved sense of well-being.”

Michael agreed, and in doing so reminded me that in life, when it comes to quality versus quantity, we’ll always choose quality. And as far as I can tell, since starting cannabis, Calvin is experiencing a whole lot more in the quality department.

i can't breathe

Summer 2014

The evening was blazing hot. I was in the middle of mixing myself a bourbon with ginger beer on ice while Michael busied himself cooking our dinner. Calvin was screeching and spinning in his johnny-jump-up. He’d had an off day, whining a lot at who knows what. When I turned to check on him I saw that he was jackknifed in his jumper, his contorted limbs rhythmically pulsing. 

“Oh no!” I cried, as Michael and I ran to his side and began prying his stiff body from the jumper, the crotch of which was wedged tightly between his rigid legs.

I had a hard time telling if or when the seizure was over, except for that he had begun breathing again. I gave him several drops of cannabis oil since, even though the color in his face had returned, he continued to twitch and flinch like a tortured bug. Within minutes the spasms had subsided and he fell asleep on the couch.

Around the same time, a man named Eric Garner and a man named Michael Brown also stopped breathing.

The seizures continue to batter my son every six to nine days, though now they occur almost exclusively in the middle of the night. Calvin had a couple of grand mal seizures two nights ago, but I'm confident that if in their aftermath I hadn't given him extra doses of my homemade cannabis oils while lying in bed next to him he'd have suffered a third one.

Epilepsy is relentless. The seizures and the pharmaceutical drugs used to treat them rob our children of meeting their full potential, of living life to its fullest and often make them feel horrible. It pains me to see Calvin suffer, particularly when there seems to be nothing I can do. Try as I may, the seizures continue their steady assault on our ten-year-old son's brain and body. Our only hope in stopping the battery, it seems, is to continue giving Calvin an herb—cannabis—which is illegal at the federal level. In doing so we are essentially breaking the law. Luckily, I am insulated by a state law which sanctions the use of medical marijuana ... plus the fact that I am white.

Perhaps experiencing the injustice—the plague—of epilepsy is partly why I empathize so deeply with the family members of the unarmed black children and adults being gunned down at an alarming rate by white police officers and bigots like George Zimmerman. Lately, when I watch Calvin in the grip of a seizure, watch him convulse, watch his skin and lips blanch, his eyes sometimes rolling back or vacant and at others full of fear, I can't help but think about the scores of mostly black victims that continue to be sprayed with bullets, cuffed, punched, tasered, gassed, pepper-sprayed and choked to death by white cops. How did these fellow humans feel during their assaults? How do their loved ones feel when they see the distressing videos and hear their beloved's last words:

it's not real. i don't have a gun. stop shooting. officers, why do you have your guns out? please don't let me die. what are you following me for? mom, i'm going to college. why did you shoot me? i love you too. i can't breath.

Some of you might wonder why I continue to write about racism in a blog largely dedicated to motherhood, epilepsy and disability. Some of you might be fatigued by the rash of stories in the news and peeved by the talk of racism, by the inconvenience and violence of protests, by the lingering frustration and fury over the grand jury failures to indict the white police officers in the Michael Brown and Eric Garner killings, uncomfortable because of the Facebook posts condemning racism, police brutality, riot gear, racial profiling and the videos showing police assaults. Maybe you're sick of it all. Maybe you wonder why I continue to fuss about it. I'd say those are white-world problems, and I'll tell you why: Because as someone who feels deep despair, anger and hopelessness seeing my child pummeled by relentless seizures, seeing him stop breathing for minutes at a time, seeing his progress choked by vicious drugs and to be always fearful of the next attack thinking it might be his last, I shudder to imagine what it must feel like to be a person of color today and to suffer under a system built to oppress them, to mother a child who will no doubt at some point in his lifetime be wrongly profiled, targeted, pulled over, frisked, suspected, feared, questioned, blamed, arrested, charged, beaten, incarcerated or murdered by white law enforcement officers and a white criminal justice system, to live in a country where most white people deny that racism exists or is at the root of these kinds of wrongdoings. I write about it because it is wrong and pervasive and I love and understand my friends and it is a problem that is not simply going to disappear until white people start to understand there is a problem, until, perhaps, white people start to feel uncomfortable, which is little to ask considering what black people have had to endure for four-hundred years.

The night after the Grand Jury declined to indict the white police officer who put Eric Garner in a choke hold that lead to his death, in the wake of Calvin's seizures, I laid awake lamenting the outcome and the plight of so many others and I thought about my fortune: My boy is alive. I live a life of privilege in a nice home in a safe community with a husband who has a good, steady job. We've got plenty of food, a comfortable, reliable car, good health care and money to spend—and I am white, which is not to say I am proud to be white. I can go to our local dispensary and purchase one ounce of the best cannabis bud which fills more than half of a large mason jar. I can transport it home in its white paper bag never giving it a second thought. At home, I can make it into an oil which I give to my son to lessen his seizures. I can tell friends about it. I can blog about it. I can feel relatively sure that I won't be arrested for possession and put in jail or have my son taken from me by Child Protective Services.

In a different world, one in which I were black and male, would I make it past security even with my medical marijuana cards on me? Would someone call the cops because I looked suspicious since I was wearing a hoodie and I had my hands in my pockets? Would they believe I was buying the cannabis for my ten-year-old son's epilepsy? On the way home, would I be pulled over for, as some say, driving while black? Would I be harassed? Would I, in my legitimate expression of anger and frustration over the injustice, be seen as belligerent, be cited, be assaulted, be arrested, be put in a chokehold, be thrown in jail? Would they shoot me while I reached into the glove box to get the car's registration? Would my last words be, "I can't breathe"?

https://twitter.com/shebe86

depth perception

In high school, I had a handful of very good teachers who disciplined me in the subjects of English literature, creative writing, math, history, Spanish and anthropology. I remember them—the best ones having wicked senses of humor—as much, if not more than the details of the subjects they taught.

Very recently, I reconnected with my anthropology teacher, Thad McManus, on Facebook. I didn’t know him well and I doubt he remembers me at all, let alone as one of his most sophisticated students. I was the jock who sat near the front of the class with wet hair in an over-sized varsity letterman's jacket.

Over the years, I’ve often recounted something I learned in McManus’s class, something about perception. We’d been assigned a book to read by an anthropologist who had spent years living amongst a Pigmy tribe inhabiting the dense rainforest of Central Africa, Indonesia or Papua New Guinea, I can’t recall which. The author described a day when he took his friend, one of the tribe’s elders, beyond the rainforest onto an open plain, a place where no tribe member had ever been. The two men perched themselves atop a high bluff overlooking a valley where, off in the distance, a large herd of water buffalo were grazing. The Pigmy elder reached out and tried to pinch several buffalo between his fingers, thinking they were ants. It became clear to the friends, and later to my classmates and me, that the Pigmy people hadn’t fully developed their depth perception due to the density and sameness of the forest in which they lived.

This image stuck with me and has, over the years, helped me to understand how often people’s perception is limited to their own experience, to who they are and what they see in their immediate surroundings, in their neighborhoods, on television, in the books they read and in the news sources they choose. I witness this kind of insularity when it comes to my ten-year-old son Calvin, a rarity who is severely disabled, can’t talk, walks poorly and peculiarly, wears diapers and is often prone to fits of mania due to impending seizures and to the powerful antiepileptic drugs he must take. I sense it when strangers stare at us—even glower at us—when he is shrieking or simply stumbling past. I sense it with people's puzzlement over the fact we didn’t have more children when we found out Calvin would be disabled. I sense it when people say everything happens for a reason or that Calvin's suffering is meant to teach us something, or when doctors tell me not to overreact or bristle at my insistence. I sense it when people question my hypervigilance, my frustration, my impatience, my anger. Because of their shortsightedness they aren't seeing the big picture—why I am who I am, why I act how I act, why I parent like I parent—because they don’t live with and love a disabled, chronically ill child. Thankfully, there are the insightful ones who choose to look beyond their own experience to see and feel our world and, thus, can empathize.

So, too, I sense a deficit of earnest perception surrounding the recent events in Ferguson—the shooting of the unarmed black teenager Michael Brown, the subsequent decision not to indict the white police officer who killed him, the protests, peaceful and otherwise, and the fallout in the news, on talk radio, in coffee shops and classrooms and on social media. What has come into sharp focus for me is that many Americans aren't seeing past their snug environs and are in great denial of our nation's systemic problem with racism. Others don't appear to give a shit. What I see a lot of is this: standing ground; slinging armchair indignities (think Archie Bunker); blaming and dehumanizing the black victim; characterizing the Ferguson killing as an isolated incident thereby rejecting the epidemic of racism; derailing the discussion of white cops killing unarmed blacks into a reproof of black on black crime (itself a product of the systematic oppression of minorities); ignoring our nation’s gross, racist inequities in housing, education, employment, income, law enforcement, imprisonment and sentencing and escaping down the comfortable path of scapegoating.

But when we step out of the shadows and the shade of the forest we can see the bigger picture, one that is vast, varied, colorful and perhaps difficult to understand unless we are willing to take a closer look. With a morsel of scrutiny we can see an establishment that is stacked against an entire race, a people systematically exploited in the days of slavery and whose descendants, for whatever lingering bitterness, profit, power or cruelty, continue to be quashed.

Thirty-three years after my high school graduation, I find myself back in the classroom, though not to study anthropology. I'm here to tell Calvin's classmates about him and about epilepsy. When I visit the students I always end our discussion by saying that Calvin is the best person I know, in part because he doesn't have a mean bone in his body. I tell them to be kind to others who are different from them, because it is a great big world out there and no matter who we are, what we look, sound or act like or where we are from, it is important to understand and remember that inside we all have the same heart. To do this is to beautifully utilize the full depth of our human perception, which allows us to see other worlds and realities with open eyes, minds and hearts.

photo by Michael Kolster

mom at bedside, appears calm

Written by Suzanne Koven, M.D.

We carry a nylon lunch bag everywhere we go, royal blue with purple trim, containing two plastic syringes, each preloaded with 5 mg of liquid Valium, plus packets of surgical lubricant and plastic gloves. At the first sign of blinking or twitching, we lay him on his left side, tug down the elastic waist of his pants, part his small buttocks, and insert the gooped-up tip. Within moments, the motion stops, as if an engine has been switched off. Then he falls into a deep sleep. When he relaxes, so do we.

He's 5 years old, the first time. Our babysitter takes him to a pizza place for lunch. He laughs mid-slice, blinks his eyes several times, slumps to the floor, and climbs back onto his chair. She hesitates—what was that?—and then calls 911. She pages me. I keep the message stored in my beeper, periodically daring myself to relive my first reading of it.

I meet them in the ER at the community hospital near our home, showily flashing my downtown hospital ID tag. Soon my husband rushes in, wearing the ID from his downtown hospital. All the tests are negative, they say. Bring him back if something else happens.

Something else happens. The next day, I skip work and keep him home from school. He sits happily in front of cartoons while I pace and polish, pace and fold. Maybe the babysitter overreacted, I reason. Maybe he's just a goofy kid. The moment I stop watching him, he cries, “Look, Mommy! Look what my hand can do!”

Downtown. No mistaking it this time. Grand mal, big and bad, right on the gurney. Lumbar puncture. MRI. All negative. Before we go home, the neurologist asks if we have further questions. “Just one,” I say. “What do we do if he does it again?” The neurologist seems surprised. His raised eyebrows silently ask, “Aren't you both doctors?” He hands us a pamphlet.

Dilantin. Chewable yellow triangles three times a day. Triangles to first grade and the beach and day camp and a sleepover. The other kid has cochlear implants. “Don't worry,” his mother says, accepting my baggie of pills. “My kid comes with instructions, too.” We become members of an exclusive club no one wants to join.

One day, almost exactly a year later, the school nurse calls. “It's been 10 minutes and it's not stopping,” she says. I'm home that day and I screech over in seconds, leaving one tire on the schoolyard curb. He's in the nurse's office, lying on the plastic divan reserved for kids with sore throats, bellyaches. Fakers. I know what this is called, this shaking that will not stop. I know how to treat this, in adults. But all I know now is how to hold him, jerking, foaming, soaked with urine.

In the ambulance, the foam turns bloody. I ask the ponytailed EMT whether he will die. She pretends not to hear, turns to adjust his oxygen. At the local ER, I bark  instructions. “He has a neurologist downtown,” I say. “He needs to be transferred.” The ER attending, who has been bending over him with her lights and sticks, straightens. “I think,” she says, not unkindly, “Mom needs to wait outside.”

Tubed, taped, lined. Ready for transfer. There is one last thing. The ponytailed EMT hands me a specimen cup in which the source of the blood that had burst my heart open rattles. “Here, Mom,” she says, smiling. “For the tooth fairy.”

Back at home, 40 pills a day, crushed, on spoons of Breyers cookies-and-cream ice cream. Still he blinks and shakes, shakes and drops. The weeks go by like a slow and sickening descent, landing on the carpeted floor of the playroom in our basement. We spend most of the day there because it's the only place in the house where he can't fall down the stairs. At night we tuck him tightly into Star Wars sheets but still find him on the floor in wet pajamas. If the Valium fails, we call 911. A fire truck arrives with the ambulance, and the firefighters, with their giant boots and helmets, crowd along with the EMTs into the small bedroom our boys share, delighting our younger son.

He is admitted. He is discharged. He is admitted and discharged again. Admitted. Discharged. Admitted. Discharged. Admitteddischargedadmitteddischargedadmitteddischargedadmit-teddischarged. My husband, too tall for the fold-out-chair bed, takes the day shift. I pad in slippers through the hospital at night with the other parents. We buy one another coffee. We commiserate. I grow more at ease in this sleepless company than with anyone else — my family, my friends, my medical colleagues. I also cling to the nurses, Jen and Sarah and Kristen and “the other Jen,” as we call her. One leaves my son's chart in his room, and I sneak a look. “Mom at bedside,” a progress note reads. “Appears calm.”

Finally, a break. The sixth or seventh MRI shows a subtle irregularity in the right temporal lobe, possibly a tiny tumor, a focus. We love the very word “focus,” a raft of hope in a vague and endless sea of anxiety. Never have parents been so happy to learn their child might have a brain tumor.

The surgery works. The medications are discontinued. I don't ask to read the pathology report, the operative note. I am startled by my lack of medical curiosity. I wish to know nothing other than that my son no longer shakes. After the staples come out, we pile into the car and take a 9-hour drive — unthinkable during the previous months — to visit my in-laws. On the way home, my husband glances at the back seat through the rear view mirror and, returning his eyes to the road, says, “He's blinking again.”

A second surgery. A third. This time, we're lucky. “The luckiest unlucky parents ever,” I joke.

Years pass. We renovate our kitchen and find the lunch bag with two dried-up syringes of Valium in a cabinet about to be torn down. Our emaciated boy doubles in weight and then doubles again. He graduates from high school. He graduates from college. He moves away from home.

I do not know how much he remembers. He rarely speaks of those years, except to comment on whether a barber has done a good or not-so-good job of hiding the scars.

As for me, occasionally my terror will snap to life again, as if I've been holding it by a long and slack tether. It happens when I am walking through the peaceful, leafy streets of our town, pumping my arms, working my aging heart and muscles, quieting my busy mind. A siren sounds. An ambulance appears. Though I know from reading the log in our local paper that the emergency is rarely dire — a dog bite, an asthma attack — and I know that my son is nowhere near, I still stop to see which way the ambulance is heading.

People ask, “Is it easier or harder to have a sick child when both parents are doctors?” But this is the wrong question. There is no hard, no easy. Only fear and love, panic and relief, shaking and not shaking.

Me and Calvin in the hospital after a dangerous, prolonged seizure, probably not unlike the author and her son.

giving thanks for . . .

thanksgiving. calvin. words on a page. charity. rain. kisses. cheese bread with butter. long, warm autumns. fluffy nellie dog. humor. chef michael. dry-brined turkey. memories of dad carving it. diversity. cannabis oil for calvin. seizure-free days. a little extra sleep. mashers. pumpkin, pecan and apple pies. friends, new and old. mellow child. cranberry sauce and gravy. generosity. candle light. love. bourbon on ice. altruism. mom. curried butternut squash. children. the clink of glasses. teachers and helpers. potus. gifford's old fashioned vanilla ice cream. barbara. ambient light. music. wit. fires in the wood stove. roasted brussels sprouts with parmesan and truffle oil. progressive thought. red wine flowing. a job, a house, clean water and electricity, food on the table, clothes on our backs. leftovers.

a better world

I wish this were a better world, one in which my ten-year-old son didn’t seize all night long—like the other night—and have to be pumped full of addictive drugs that make him feel like crap yet do nothing to improve his condition. Nights like these, when I lie awake next to him for hours listening to him breathe, listening to his heartbeat, make me think of the world and others struggling in it.

I wish this were a better world, where cops and bigots didn’t kill innocent, unarmed black men, women and children nearly every single day, where a blood-orange sunset doesn't remind me of bleeding streets, wailing mothers and burning eyes. I wish this were a world where true justice could be served, a world void of those who deny the racism that soils our society—racism as ubiquitous as the effing turkeys on our Thanksgiving tables. I wish this were a world where more white folks humbly acknowledged the privileges they enjoy and take for granted, a world where they denounce the systematic oppression of minorities, the mass incarceration of black men, the voter suppression, the fear mongering, the scapegoating, the bitter contempt of people most whites know little to nothing about save the disparaging images permeating the news and the vile comments on social media. I wish this were a world where more people were seriously introspective and empathetic, then cared enough and had the spine to incite change. Because from my perspective, as long as I have lived, not enough has changed.

I wish this were a better world where neighborhoods, cities and countries weren’t divided by walls, where everyone had a home, a world in which those homes weren't torn down or chewed up and swallowed by the greed of others. I wish this were a world where everyone had enough food to eat. I wish this were a world where oligarchs didn’t rule the land, where poverty and ignorance didn’t exist, where congressmen couldn’t be bought, where millions of our citizens weren't systematically disenfranchised. I wish this were a world where the heads of corporations didn’t pocket enormous profits on the backs of people who don't receive a living wage for their toil.

I wish this were a better world where people could hope and work for change without hearing flabby platitudes issued by hardliners like, "love it or leave it." I wish this were a world where every baby born, no matter how wealthy or poor, had access to a good education and proper health care, a world where everyone had the same opportunities, because—whether you choose to believe it or not—we don't. I wish this were a world where the self-righteous didn’t impose their beliefs and preach their moral superiority, then turn around and act so ugly, hateful and contemptuous to people who they don't even know or care to understand.

I wish this were a better world, one in which—if he were healthy, normal and seizure free—my son Calvin would grow up and feel good about living in and, if it wasn't, he'd do his best to make it that way if for no other reason than it's the right thing to do.

Detroit, 1967

Ferguson, 2014

watching and waiting

Today is the eighty-first day since the last time Calvin had one of his typical, daytime, bath-time, three-plus minute, tonic-clonic seizures, the kind where he convulses and turns blue. Other than a couple-few, seconds-long, early morning partial seizures, Calvin's daytime seizures have all but disappeared. We can't be certain exactly why, but everything seems to point to the homemade THCa cannabis oil I've been giving Calvin during the day since late last February. The evidence is even more compelling considering we have weaned him off of over 50% of his benzodiazepine, clobazam, beginning last April.

In general, with the exception of dealing with a hysterical kid in the days preceding a big seizure—all of which are now occurring every seven to ten days in the middle of the night and/or just before dawn—Calvin is calmer, more well-mannered, more patient when he sits in our laps or when we ask him to wait, and is walking and attending to things far better than before starting the cannabis oil.

A little over two weeks ago, with the hope of eradicating Calvin's nighttime seizures, we began supplementing his regimen with a few drops of CBD cannabis oil at night and in the morning using, as a base, a honey-oil resin from our local dispensary to which I added MCT (medium chain triglyceride) oil. The oil is not fully decarboxylated (heated to eliminate the acidic compounds from the cannabinoids) so it is still rich in CBDa and slight in CBD (cannabidiol), the cannabinoid considered by some to be most useful in combating epilepsy. I figured I'd try giving it to Calvin anyway. Unlike pharmaceuticals, I'm not afraid to experiment with different forms of cannabis, particularly since I'm fairly certain the cannabinoids in them work best synergistically. The dispensary is working on more fully decarboxylating the honey-oil and when they do, we will likely switch to that.

In the meantime, we are watching and waiting. Today is day six since Calvin's last seizure. I'm hoping that the CBD is building up in his system and might soon work to thwart future ones. Only time will tell. If it does work, we'll resume his benzodiazepine wean hoping to get him completely off of the clobazam within six to nine more months, perhaps sooner.

Today, Calvin went to school happy. His morning was pretty relaxed, full of smiles, hugs and kisses for me and Michael. His balance has been amazing and yesterday he walked all the way to the fields—and then some—and back again before joining us at a crowded grocery store to walk some more and to bang and mouth the cold, glass refrigerator doors.

I'm feeling thankful these days, and I'm crossing my fingers.

Calvin waiting to bowl, photo by Mary Booth Scarpone

a sorry state

Epilepsy affects 65 million people worldwide and about one in 100 Americans, over 500,000 of them being children.

One in twenty-six Americans will be diagnosed with epilepsy at some point in their lifetime. 

Each year, as many as 50,000 Americans die from epilepsy and related causes, such as drowning and head injuries—more than die from breast cancer.

Over 200,000 Americans are diagnosed with epilepsy each year.

For seventy percent of those with epilepsy the cause is unknown. 

Over thirty percent of people with epilepsy do not have their seizures controlled using medication.  

People with epilepsy live their entire lives tethered to the terrible side effects of anti-convulsant pharmaceutical drugs.

It's a sorry state when something so pervasive and damaging as epilepsy gets so little attention. Please give to CURE epilepsy at http://www.calvinscure.com

mother of exiles

The New Colossus

Not like the brazen giant of Greek fame,
With conquering limbs astride from land to land;
Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
Mother of Exiles. From her beacon-hand
Glows world-wide welcome; her mild eyes command
The air-bridged harbor that twin cities frame.
 
"Keep, ancient lands, your storied pomp!" cries she
With silent lips. "Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!"

—Emma Lazarus

In 1903, the poem was engraved on a bronze plaque and mounted inside the lower level of the pedestal of the Statue of Liberty.

Like most Americans, my ancestors were immigrants, some making the long and treacherous journey to escape the perils of Ireland’s potato famine, others traveling from Spain and landing on Sir Francis Drake Beach north of what is now San Francisco. They left their families and risked their lives to make a better future for themselves and their loved ones in a land that was not theirs but that became home. Millions had come before them and millions followed, making this a great nation of immigrants, rich in diversity and in its stories of struggle, courage and hope told by immigrants and born of survivors of Native American massacres and of the ugly scourge of slavery.

Recently, I had a conversation with a woman about the decades-long wave of undocumented immigrants coming to this country to make better lives for themselves and for their children and as refugees escaping the murderous threat of drug cartels, child labor, human trafficking and hunger. They come to work hard and to contribute. They come bearing hope. She complained that these immigrants don’t pay taxes, so I pointed out that indeed they do, at the very least paying sales tax while many also pay income tax. Later, while discussing a different topic, she admitted to not paying taxes on the tips she makes at work. I tried hard to grasp her rationale, which to me seemed like a double standard, but I came away more perplexed than when we began, and it lead me to check myself for hypocrisies in my own behavior, which no doubt I have.

Lately, I've heard a rash of folks grousing about undocumented immigrants living in this country. It’s always the same list of gripes: they don’t speak English; they don’t work; (and yet) they’re taking our jobs; they’re on the dole; they’re criminal; they don’t pay taxes; they don’t contribute. I wonder if these protesters personally know any undocumented immigrants and where they get their information. Perhaps they employ them, underpaying them to pick their fruit, pack their meat, clean their homes, care for their children.

I remember a conversation I once had with an American man who said that Mexicans—who make up the largest group of undocumented immigrants living in this country—are a bunch of lazy crooks. He’d come to the conclusion because he’d briefly visited a large Mexican port city and had either been pick-pocketed or had heard that pick-pocketing was rampant there. I pointed out that all major port cities worldwide are likely rife with con artists. I asked if he knew any Mexican people, had any Mexican friends, and he refused to answer. I asked why he thought Mexicans were “stupid and lazy.” He replied, “Just look at the state of their economy.” I asked him if he thought Depression-Era Americans were stupid and lazy. He didn’t answer and instead turned his back and walked away.

The stories I’ve heard of undocumented immigrants are of people no different than ourselves. They're hard-working people, men, women and children hoping for a better life, hungry people, ambitious people, good people, loving people. They risk their lives, just like our ancestors did, to make a better future for themselves and for their families. I imagine if I lived a life like theirs and if I were desperate enough, I would do the same for Calvin and for myself. I'd risk crossing that border and hope with all my heart that I'd be given a chance to prove myself, a chance to contribute, a chance to thrive in this place we once lovingly and proudly thought of as the Mother of Exiles.

underwater

If only I could breathe under water I'd dive in and drink the liquid like sky, stay under for a spell drenching myself in the cool dark spaces that lurk at my feet. Then, I'd ride the thermals in a deadman's float, my fingers and toes trailing through the reeds and silt making marks like claws.

Underwater I'd forget about my son's seizures, his screaming spells, our sleepless nights, my exhaustion, worry, angst, dread, fear, my despair. Underwater I'd drift alongside smooth wooden boughs, and let myself get caught in beautiful eddies, but only for a while. Somehow, there'd be music down there with me, marimba for sure and perhaps velvety brass and some strings, happily pinging away as I pass over rocks and between sunken trees that look to me like ghosts or skeletons or both. And from that music I'd cry invisible tears.

Perhaps I'd come face to face with a catfish or an eel. Maybe we'd kiss each other in solidarity of life's hardships, hers from the hunger and the hook, mine from the messed-up brains of my son and my mother, both of which tug and tear at me until I'm raw.

I read this to my husband and he tells me how strange it is that when he took this photo he watched a large fish serpentine its way against the current up the channel. I'm swimming upstream, I think, and have been for a while. Good thing I'm a strong swimmer, the water being my second home. I know when to fight it and I know when to give in and simply let it take me under, if only for a spell.

Rio Grande, photo by Michael Kolster

thanks y'all

Yesterday, he came through the mudroom door a month after I’d said a very tearful goodbye to him. He’s lost several pounds having survived a string of long, hard days photographing the Los Angeles River, the Rio Grande, The Hoover Dam and Lake Mead sustained in great part by a modest diet—not so much by design as by necessity—of avocado, cheese, sardines, bread and raman. He looks like he did when I first met him seventeen years ago, not an ounce of body fat on him. Complimenting him on his wiry physique, I joked that he resembles Jesus, at least the European version of the man. We laughed.

As part of his Guggenheim Fellowship, my husband Michael drove cross-country and back in a rental van packed with 220 sheets of spanking clean 8 x 10 glass, several jars of syrupy collodion and silver nitrate, gloves with which to handle the glass and chemicals, several gallon jugs of distilled water, trays and tanks and graduated cylinders, one dark box and its stand, one dark cloth, two large-format cameras, at least one tripod, a handcart and several homemade wooden cases in which to hold his glass plates after exposing, developing and fixing them.

During his trip he called me twice daily to tell me how many plates he’d shot, how long he’d sat in traffic, how tired he was, how great the World Series was, how nice his hosts were and how ready he was to come home.

Calvin, Nellie and I stayed home, but mostly not alone. A legion of friends and family came out to help me. Seti flew here from LA on a 24-hour trip from hell, and since I couldn't, Macauley picked her up at the jetport at eleven p.m. bearing a warm winter jacket and a burger for a gal he'd never met. A few days later he stepped in again to take my sick car to the mechanic, then took Seti back to the airport when she left. A week later my mother-in-law lovingly descended, but from Florida. Regrettably, both women witnessed Calvin have a bad seizure in the middle of the night. Both helped me manage it. Later, my sister drove up from Connecticut for a couple of wonderful days and nights. All of them gave me an abundance of love and support, helped make me smile and laugh.

Arnd, who traveled from Berlin, though not expressly to help me, stayed four nights and, in true form, tried fattening me up on loads of breads and pastries from Standard Bakery. Nick came by—twice—and thoroughly entertained me with his ever-quick wit; he knows me so well. Ann, Kevin, Russ and Susan brought dinner one night, helping me put a dent into my lonesomeness. Ann returned a few days later bearing gingercake and whipped cream for breakfast! Jen and Madeleine checked in, hung out and slept over. Maura, Matt and Lauren looked in on me several times and stayed at least short enough for hug and/or a drink and long enough for dinner. Mary walked Nellie when Calvin was recovering, Connie did some of my shopping and my new friend Sarah treated me to coffee. Our good-ole homies Luke, Sarah and Matt sent my sleep-deprived blues packing when they stopped by for a spell last Sunday night and turned my kitchen into an impromptu party. Lorry brought me some donuts, hugs, laughs and a smile. Barbara kept care of Calvin several evenings so I could saddle up to the bar and dine out with a few of my pals.

They cooked and cleaned and walked the dog. They brought me bourbon and pizza, homemade tamales and lentils and called on me often to ask if there was anything I needed. Without them, I’d have been hard-pressed to have made it a manless month without totally losing it to sleep deprivation, loneliness, monotony or Calvin's mania. Aviva, Kim, Lucretia, Teresa and Viv, I'll be sure to catch up with you soon.

Thanks y'all, from both me and Michael. Here's just one of hundreds he was able to take because you were here helping me cope:

click on photo to enlarge

Rio Grande, photo by Michal Kolster

manna from heaven

Around me all the colors burn bronze and copper except the evergreens, which are as deep and verdant as they were back in spring. Fading splotches of blood-crimson spatter smoldering stands of trees that edge the fields. When a gust comes up, dead leaves fall like huge yellow snowflakes carpeting the ground in a crispy layer of gold. I stand in the center of a lea where the wind, not quite cold not quite warm, fingers through my hair.

Around me, the young athletes with their knee-high socks and neon jerseys, jockey balls across the turf with great skill. I think of my son, now ten, just beginning to walk well enough for me to, at times, let go of his hand, his harness. Then I think of my mother whose balance is becoming as precarious as Calvin’s once was not long ago and I imagine the crisscrossing of their paths, hers dwindling ... and his? I remember as a youth being spry and sure and thinking I could do almost anything—climb trees, scale mountains, ski black diamond, tackle brutal waves, jump off of cliffs—and that my body would oblige. For some, like my son and my mother, every step is a risk and, if they were cognizant, perhaps a leap of faith.

Last night was another rough one, Calvin rousing every hour after three-thirty. I wasn't sure if his awakenings were little seizures, partly because he’d turn and wrap his arms around my neck before falling back to sleep, which he doesn't usually do after seizures.

When I put him on the bus I told Cindie, his driver, that he had had a good morning and that I had started him on a second kind of cannabis oil, one high in cannabidiol (CBD).

“I don’t even know how much to give him,” I told her.
“Try anything,” she said compassionately, then shut the doors and took off while my boy patted the window as if waving to me.
"Bye Calvin, I love you!" I shouted, as I do every morning.

I’m starting Calvin's new cannabis oil at a microdose, far less than all but one person have recommended. Less is more, I think to myself, and I remember all of the pharmaceutical drugs we've thrown at this little boy of ours and how I've always been so cautious, dubious and reluctant to increase doses too quickly or too much at once, even in the face of a doctor's recommendation. I know that this tack I’m taking by giving my son homemade cannabis oils to control his seizures is a leap of faith to some extent. But, like when I was young, I feel confident, sanguine, and I try not to be deterred by fear. Besides, what could be worse than the drugs he's already tried? Nada.

Around me acorns drop from the trees and I crush them beneath the heal of my boot. With each cracking husk I release a little anger, angst, frustration, which I feel bubbling beneath the surface of my own shell. Above me the clouds roll in displacing the clear blue and I wish it would just rain, wish it’d pour, and if it did I think I’d stand right out in it and let it drench me to the bone. I just want a new start, want to erase the years of damage that the seizures and the drugs have done to my son, wish I could know what he would have been like without them.

Maybe this cannabis is like a fresh start. Manna from heaven, I think, even though I don’t believe in heaven beyond the one I see in the night sky, in the amber, carmine and russet leaves falling around me, in my son’s blue eyes and the feeling of his fingers at the back of my neck, like the wind tussling my hair.

photo by Michael Kolster

batting a thousand

Unfortunately, of late I’ve been batting a thousand. As I expected, Calvin had a seizure after he went to bed last night. At three-thirty I awoke to his telltale raspy, constricted breathing, his arms and legs convulsing. I leaned into his bed and kissed him and told him it was going to be okay, then I ran downstairs to get his cannabis, both kinds. With a one-milliliter syringe, I drew up 0.25 mls of the new CBD oil that I'd made last night and 0.75 mls of my THCa cannabis oil. I crawled in next to Calvin and slowly syringed the oil inside his cheek, trying carefully to keep it from dripping out the side of his mouth. He struggled some, so I straddled him, cradled his head and embraced him for a few minutes until it seemed as though he was falling back to sleep.

I laid awake a couple of hours in the dim light coming from my bedroom; I'd left a light on so I could easily see Calvin's face. Just after five he startled, and by his chewing and swallowing sounds I knew he was having a second seizure, though this one not as bad. I gave him another 0.25 mls CBD oil. The seizure lingered then looked as if it wanted to become convulsive, so I grabbed the rectal Valium, which we’ve used just once in seven years, and I reluctantly prepared to give it to him just as the seizure was ending. Relieved, I put the cap back on the vial and set it on his dresser. Calvin woke an hour and a half later, but luckily not to a third seizure. I never went back to sleep.

I’m cautiously optimistic that this CBD (cannabidiol) oil, which is proving to be helpful to many children with refractory epilepsy, will also help Calvin. The THCa oil has already allowed him to go thirty to sixty-plus days without a daytime seizure while gradually weaning him off of over 50% of his benzodiazepine, clobazam. So, we’ll try giving him both oils since my gut and my research tells me that isolating a single cannabinoid might have a limited effect.

What seems clear is that we have to get Calvin off of his benzodiazepine. He probably isn’t at a therapeutic level anymore and his number of seizures, at least during a protracted withdrawal, have ticked up a notch. But, I’m leaving it alone while I titrate the CBD oil. One thing at a time.

In the meantime, it’s fifty degrees, sunny and gorgeous outside. I’m inside wearing sweatpants and a scowl on my face watching Calvin like a hawk and having to endure a replay of yesterday’s mania, which makes me wonder if we might not yet be out of the woods. The dishes are piling up, my hair is filthy, I’ve been awake since three-thirty and I have to deal with this kid by myself for the next three hours until he goes to bed. Quick, call the waaaambulance and make sure they bring a bottle of bourbon and a straight jacket. Make that two. Of each.

cbd here we come

Calvin is ramping up to a seizure tonight or tomorrow night. I hope this CBD honey, which I got from the wonderful people at our local dispensary, dissolves in the oil quick-like. He's a frigging lunatic as I write this—wound tight as an effing drum—and it's only day seven ... again. Ugh. Double Ugh. Figures, it's two days since the full moon.

Update: Calvin got some tonight!

somber day

Early this morning I woke in a groggy haze, still sleep deprived and worried more than usual about my son Calvin. He hasn’t been himself this past week having suffered a spate of seizures on Halloween night, a listless Saturday spent vomiting and several hours writhing in terrible pain the other night. None of it I seem to understand or have much control over. So, when I eventually sat down at my computer with a cup of strong coffee and read the news about yesterday's elections, I really felt ill.

Some of my friends are conservative, middle-aged or older white guys—good guys—but ask me if I like the fact that our diverse nation is mostly governed by them—our governors, senators and House representatives—and I'd say, hell no. We'd do so much better with a more diverse congress.

It is hard for me not to think about Calvin during political elections, to imagine what kind of young man he might grow up to be if things were different, if he hadn’t been born missing a hank of white matter in his brain, if he’d been able to talk, read, write and reason and all that goes with that, including being able to vote.

I like to imagine that he’d be no racist, no bigot, no sexist. He wouldn’t say appalling things about rape or call women whores like some die-hard politicians and talk radio hosts seem to enjoy doing. He wouldn’t be a fear monger or a hate monger. He wouldn’t be hell bent on restricting women’s reproductive rights under the “pro-life” banner then turn around and defend capital punishment. He’d support equal pay for women and the right of everyone to marry who they love. He’d understand and acknowledge his white male privilege and he'd give others the benefit of the doubt. He’d back common sense gun control policies which hurt no one and he'd fly in the face of fanatics who'd portray such as an effort to take people's gun rights away. He’d decry attempts to disenfranchise our poor, our young, our elderly, minority and female voters by condemning those bogus voter ID laws constructed on phony claims. He wouldn't believe that corporations are people and that money is free speech. He wouldn't hold the poor in contempt while voting to subsidize huge corporations and the likes of the enormously profitable NFL. We’d raise our son to be fair, compassionate and charitable. I truly believe he'd be all that.

After reading the dismal headlines I lamented that one of the many female candidates who ran, though regrettably one of the few who won her race yesterday, was a Republican hog castrater who aims to go to Washington to, in her words, “make ‘em squeal.” I wonder who she has in mind and how she got away with such unsavory rhetoric about testicles. Me thinks she listens to too much Rush, Limbaugh, that is.

To me, today feels like a somber day for so many women, a somber day for gay people, for poor people, for black people, a somber day for immigrants, for students, for the unemployed and for many more of us. I heard one winning candidate say, “It’s time to take our country back!” BackWARDS, I thought, to a time before Roe vs. Wade when pregnant victims of rape and incest died from botched abortions, to a time before the Voting Rights Act when minority voters were discriminated against at the polls, to a time where millions of fewer Americans had health insurance, to a time of failed trickle-down economics, when the banking and housing industry bubbles burst due to unbridled greed and lax regulation, to a time when illegitimate wars were fought over false claims and oil, to a time when my son could have been denied health insurance because of his preexisting condition, to a time of greater inequality.

I’m hoping that President Obama, in the face of congressional foes who have publicly claimed their promise to personally ensure his failure, which in turn hurts Americans (duh), can continue to make progress on immigration reform, can tighten corporate tax loopholes and reform tax policy so that the fast food worker isn't taxed at a higher rate than the millionaires and billionaires who rely on his or her service to profit, can raise the federal minimum wage, legalize gay marriage, demand equal pay for women, elect more impartial magistrates, can deliver health care to all Americans even when some Republican governors refused, can promise a decent education for all children regardless of their economic status, can continue his work on climate change, clean energy, infrastructure, jobs, can work toward legalizing medical marijuana, can level the criminal justice system, eliminate racial profiling and reduce the prison population. I really hope he can.

Yep, it's a somber day for many of us, but I'm heartened by the fact that there are plenty of progressive-minded people out there who want to move forward, not back. Next time we just have to get them to the polls.

Calvin, November 2004, photo by Michael Kolster