4.22.2018

piece of cake and other idioms

This morning, I narrowly escaped a bruised or broken nose, a black eye and a fat lip. After Calvin's second grand mal in less than twelve hours he began acting as if he were going to launch into one of his frightening night terror episodes. These events are difficult to diagnose; I don't know if they are migraines or withdrawals or panic attacks or hallucinations or some kind of seizure. Perhaps they are a combination of all of the above. Thankfully, the acetaminophen suppository seemed to help, but not before he roughed me up and head butted me several times.

Last night was the second time this month Calvin suffered a grand mal only an hour after his bedtime meds and after falling asleep—a rare time for him to have a fit, though not unheard of—and the second time he had seizures on consecutive days totaling five grand mals already this month. I'm cautiously optimistic, however, about what it might mean that we have not seen any partial complex seizures in over four weeks. If we can virtually eliminate these, Calvin will, in any given month, have less than half the number of his average of monthly seizures. Still, the grand mals possess him, and I feel we are running out of viable, reasonable options for their suppression.

Often, I tell folks that if it weren't for Calvin's epilepsy—the dread, the scores of seizures, their side effects and dangers, the drugs he has to take which I have to order, dispense and give, their side effects, the cannabis oil I make, dose and administer, the sleepless nights due to seizures and drug side effects, the cumulative toll from stress—taking care of him would be a piece of cake. Seriously, without epilepsy, Calvin's non-verbal, incontinent, legally blind, uncoordinated fourteen-year-old self would be, in comparison, incredibly easy for me, a veritable walk in the park. Without epilepsy and its drug treatments, Calvin would likely walk better and be worlds ahead developmentally. Hell, he might even be uttering words and stringing some of them together. He'd likely sleep far better and not suffer bouts of mania, withdrawal, panic or the night terror thingies. I wager his bowels would work without having to "supp" him every day. Maybe he'd even be potty trained. A kid like that I could no doubt take care of blindfolded with one hand tied behind my back. No joke. If that kind of kid—the one I just described—sounds like a lot to handle, then perhaps you get some sense of how debilitating, limiting, harrowing, stressful and exhausting epilepsy can be for a child and their family.

So, today, while it is gorgeous and mild outside, I am walking around the house like a zombie. I am not on a cake walk. Right now Calvin is in his bed with a case of the hiccups. He's got a low-grade fever, doesn't want to eat or drink, is quite agitated and has several other harbingers of another seizure on the horizon. In other words, I am not convinced he is out of the woods yet. But still no sign of the partial seizures which usually appear in the wake of grand mals. That is good.

What is also good is that I don't have a black eye, a fat lip or broken nose ... yet. But I wish today with all my might that Calvin and I were taking a walk in the park.

Photo by Michael Kolster

4.20.2018

stream of consciousness

It has been four weeks since Calvin's last partial complex seizure. Two-and-a-half weeks since eliminating his CBD oil. Trying hard to focus on his good days rather than focusing on harbingers of seizures to come. Enjoyed a bourbon with Woody, who lovingly calls me a twerp with his Maine accent. I tease him by asking, "what is a twupp?" Our good buddy Roger broke his upper arm in three places and is in a kind of prison that I know all too well. Hopefully we'll be seeing him and his wife, and maybe his kids, soon. Had a great night last night with two of our besties. On the drive home we could have hit some youngsters who appeared out of nowhere stumbling across the dark road. A few miles further we saw a homeless woman seated cross-legged on the shoulder of the road. She was rocking. We turned around and picked her up and drove her back to her tent behind the U-Haul site. She was crying. We gave her some hot dog buns. She can't eat the spinach and tomatoes we had because she suffers from Crohn's. I told her cannabis works well for the disease and she said, "I know, but I can't smoke it because I have kids." I told her she can ingest it. I had a good day today. I saw James, a homeless man I met not too far back. He got a job at my friend Tony's deli. He starts Monday. I was so glad to see him. He told me to say hi to Calvin. I finally spent some time in the garden giving some food to rhododendrons and perennials. It felt good to work in the soil. My arm is slightly sore. Feels good. The grass is almost green. Michael got his motorcycle out today. I love my hubby who is making chicken and dumplings as we speak. It is cold and windy outside. We have a fire in the wood stove. Calvin is about to come out of the johnny-jump-up. He is repetitively humming. Today is day eight since his last seizure. I expect one to come soon. Night before last I woke myself up shouting in my sleep having dreamt that he and a grand mal. College students are walking by in the field behind our house. I like that. The light is dimming. Jazz is playing. Chicken is sizzling. Bourbon is sweet on my lips. I've been drinking less these days. I'm on my way to San Francisco on Thursday. I am elated and frightened. It will be okay. Nellie is the best dog in the world.

Photo by Michael Kolster

4.18.2018

some of the best americans

On Monday, it felt like winter still had us in its grip with near-freezing temps and sheets of sleet driving sideways in bitter wind. Yesterday there was a hint of spring, though the crocuses which had emerged last week were pummeled by the rain and suffered badly in the frost. It was quite a rare start to spring vacation which, because of extra hours caring for my non-verbal, incontinent, uncoordinated, restless, seizure-prone son, is never vacation for me. But I shouldn't complain.

Calvin makes it hard for me to write when he is home. Though I try, I'm not as able as I'd like to squeeze out a few sentences between diaper changes and feedings and shadowing him around the house. Often, when I can't seem to focus or find time to put down my thoughts, I wind up reading dribs and drabs of the New York Times and other news. Beyond the stunts which never cease to come out of the current White House, plus the Mueller investigation and the Syrian atrocities, what was troubling to me this week was the arrest of two African American men at a Philadelphia Starbucks. Their crime? Doing exactly what the rest of us do when sitting and waiting for a friend to show up for coffee: nothing.

While taking Nellie on a brisk walk yesterday, I tried to form sentences in my head from my feelings about this nation's ongoing problem with bigotry and racism—the unconscious kind, the implicit kind, the blatant kind. I reflected first about the scores of adults who stare and frown at Calvin in the grocery store, both overtly and subtly attempted, as if afraid of him, repulsed, or both; they have no idea what a sweet, pure and affectionate soul he is.

They only see that he is different.

I then turned my thoughts to race, recalling the moment I first heard a black man—one whom I loved at the time—tell me that (White) society had taught him to fear people like himself. I remembered when a dear friend, a college employee, told me that a White man had driven past shouting "nigger" out the window, telling him to go back to where he came from (Maryland?). I recalled my mother, years ago, assuming that the tall, smart-dressed Black man emerging from a luxury car must have been a professional basketball player. She then cursed me when I rejected her bias by suggesting that he might be a banker, doctor or lawyer. I recounted the time a neighbor told me with certainty that the dude in a hoodie crossing the street to ask for a cigarette had dubious intent. I've had friends embarrassingly gape and remark over a bartender's attractive bundle of dreadlocks. I've heard white folks insist, most erroneously, that the disproportionate rate of African American people in prison is because they are more prone to commit crimes, rather than believe empirical evidence that People of Color, particularly Black people, are more prone to be swept up, stopped and searched due to racial profiling. I've heard White people tell me that African Americans need to "get over" slavery, completely ignorant of the fact that the shackling of Black people never ended, only morphed over decades from slavery into other forms of systematic oppression such as Jim Crow, segregation, discrimination at every civic and societal level, and today's mass incarceration. I've seen too many videos of innocent, unarmed Black men, women and children being beaten and shot by police. I've heard so-called patriots condemn Black athletes' free speech. I've heard too many harrowing accounts of innocent Black victims and their families. I've read numerous op-eds such as one written by Charles Blow, an African American journalist whose son, while walking from the Yale library to his dorm, was accosted by a gun-wielding college police officer. I've schooled myself on our sordid history of Indigenous genocide, slavery, and oppression against People of Color. I've listened to Black people tell their stories. I know them and love them. I trust what they say.

As I trudged over thawing tundra onto gravel and gritty asphalt, I thought further about ignorance and bigotry and how the two are inextricably linked like bitter Maine wind and rain in April. Then I remembered something one of my brothers told me years back just before my move from Seattle to San Francisco.

"I can always tell when someone is gay," he said with a straight face.
"Except when you can't," I retorted.

The concept I offered him seemed to completely escape his grasp, but that was not surprising to me. I wondered if and doubted whether he knowingly had any dear, gay friends.

A similar kind of ignorance, though perhaps more dangerous, is no doubt shared by too many Whites when it comes to race. Many of my White brethren—likely without personal experience—think they know Black people, their motives, their desires, their values, their hearts, their souls. The only notion some White people have about Black people is the racist shit they are fed from watching FOX news and television shows like COPS and listening to folks like Rush Limbaugh. They choose to hear the racist political propaganda and false narratives about welfare queens and drug dealers. They swallow the bigoted and biased media portrayals of innocent Black victims depicted as thugs and perps. They don't know, befriend, love, listen to or believe Black people because of a deep-seated fear or hatred stemming from ignorance.

In the wake of the Starbucks arrests—which brought to mind the mistreatment of Blacks during the Woolworth's lunch counter sit-ins of the 1960s—I heard White folks resort to the same old lame and harmful platitudes: insisting that there must be something more to the story (implying that the Black men in Starbucks must have committed some offense); maintaining that the police officers had zero choice but to arrest; claiming that the men were somehow trespassing, should have bought something or left—something White folks are rarely if ever expected or asked to do.

Time and again I see Black folks' immense capacity for tolerance, forgiveness, resilience, patience, wisdom, charity, honesty, humor and resourcefulness in the face of hatred and bigotry. It makes sense; without these qualities they may have not otherwise endured this centuries-old White winter grip of bitter oppression, victim shaming, punishing, tormenting, threatening, arresting, incarcerating, defaming, scapegoating, torturing and killing of their Black brethren. Their stories are not the stuff of fiction. These wrongdoings and atrocities against Black people are real. Black folks, most who are decedents not of immigrants, but of human beings captured and caged like animals, shipped like cargo across the Atlantic and sold into slavery, their families ripped apart, are some of the best Americans. It's time the rest of us treated them so.

Indivisible, photomontage by Susan Partrige

4.13.2018

stress and luxuriousness

After a drink at the bar, my sister Caron and I sat side by side at a small table facing out so we could better enjoy the hustle and bustle of our favorite new restaurant in the next town over. She'd come to visit and help me out a bit while Michael was out of town for the week. We sipped our wine, slowly chipping away at an exquisite kale salad and a plate of lightly spiced fried calamari. Though still relatively early, we were winding down our evening having chatted and laughed with each other, and enjoyed some chance encounters with dear friends. Just after our host topped off our wine, nudging us to linger in a rare luxuriousness, my phone vibrated in my pocket. I jumped. The call was from Mary, Calvin's longtime aide and buddy.

"Calvin just had a grand mal," she said, ensuring me that he was okay.
"We'll be right home," I told her, then sprang up to gather my things.

Knowing well our situation with Calvin, our lovely hosts kissed and hugged us, told us to leave without worrying about anything dinner-wise. I assured them I had time to pay. At home Calvin was fast asleep and didn't stir when we all traipsed into his room. I readied myself for bed, crawled in next to him and eventually drifted off to sleep, waking twice to give him extra THCA oil in four-hour intervals. He got through the rest of the night unscathed.

I'm trying not to lose hope, trying hard not to jump to the conclusion that the recent elimination of his CBD cannabis oil was the culprit. After all, this isn't the first time Calvin has had grand mals on consecutive days and/or three grand mal seizures in the space of a week. Keeping this in mind, I feel the need to ride this out a bit longer before I consider changing his regimen again, before considering my next strategy: trying CBDA.

Today Calvin is in a better way than he was yesterday, though he is pretty lethargic. I just said goodbye to my sister who spent this week walking the dog, washing dishes, doing laundry, emptying the dishwasher and vacuuming the entire house in preparation for some guests that are arriving this evening. Yesterday, I walked five miles with her and Nellie through the woods and past several linked bogs and ponds where Nellie paddled after a flock of ducks. The snow is almost gone and it is sunny and sixty degrees. But I am sluggish even after having had a short nap. The stress of living with epilepsy—one's own or a loved one's—is acute, chronic and cumulative, and at times I feel it in every inch of me. Thankfully, visits and chance encounters with loved ones and lovely strangers give me respite, sometimes even luxuriously.

Photo by Sarah Korsiak Cellier

4.09.2018

serendipity

I'm not quite sure why the image below turned out the way it did. I didn't consciously do anything different when I took it, but there is something about it that I like: its whiteness, its clarity on one side, its nebulousness and blanching on the other. Call it serendipity. As someone who doesn't believe that things happen for a reason—except for things in my control and definitely not including things like Calvin being put on this earth disabled and suffering to teach peons like me a lesson—I can dig happenstance when it turns out good.

Speaking of which, it is notable that Calvin, after having had his last dose of the benzodiazepine clobazam, aka Onfi, just over six weeks ago, and having eliminated his CBD cannabis oil last Tuesday, has seemed to be calmer and happier for the most part. His sleep has especially improved after yanking the CBD (he remains on my homemade THCA cannabis oil that he started taking over four years ago.) So, too, he is going into his second month holding at just three grand mals in as much time, which is a 25% reduction at the very least and a 50 to 60% reduction over his worst months since beginning his benzo wean four years ago this month. Furthermore, he seems to be having seizures on fewer days, and my hope is that, over the long run, he will endure fewer partial complex seizures without CBD.

It is still early, however, so everything could fall to shit over the course of a bad day or two, or an illness. Luckily, Calvin has been surprisingly healthy virus-wise this school year, probably because he has built up a good immune response probably due to the fact he drinks bath water and likes to lick surfaces, including the bottom of his shoes, and partly because he takes probiotics and eats so well—spinach, yogurt, berries galore, almonds, meats, beets and colorful fruits, prunes, carrots, broccoli, fish, eggs; he likes it all.

So keep your fingers crossed and knock on wood again. My hope is, as the benzo withdrawal slowly loses its grip, that Calvin will have only one or two grand mals on average each month. Wouldn't that be serendipitous?

4.05.2018

melancholy

It's cold again, yesterday's puddles frozen into brittle plates of ice. The grass which laid itself down in soggy, straw-colored waves, now frosty, crunches underfoot. We had a glimpse of spring, but now a northern wind helps preserve swathes and banks of snow that linger wherever there is shade. Red-stained twigs grip tight their swelling buds.

Days like this when the sun is blinding and the wind too brisk and cutting, can breed melancholy in me. The bitter cold works to cinch up the muscles in my neck and shoulders in ways akin to anxiety I sometimes feel over my son and life itself.

At least for now, however, I know where I am, know who I am, and that I am loved by some. I know those around me (usually. mostly) and what I must attend to. I know I am taken care of and thought of. I know I have an adorable son who relies on me, and a loving, ridiculously hardworking husband who makes everything possible for us.

There is salve for melancholy.

Two nights ago we made dinner for our besties who have a son not unlike our boy Calvin. Our boys did not (really) come up in conversation. Yesterday, I commiserated with a friend living in Los Angeles who shares the lamentable experience of mothering an intellectually disabled child with intractable epilepsy. Last night Michael and I ate grilled ham and Swiss on sourdough while watching a movie called Lady Bird. Tonight I'll share an early cocktail at a favorite bar with a lovely who I never get to see enough (and who has a daughter not unlike Calvin). Tomorrow night we will meet someone new from the art world who might become a friend. Right now I am writing. Though not a record, Calvin is on his eighth day without seizures; I'll take it.

Sometimes life feels fleeting, no time to do or think. At others, impossibly inert, with all too many hours to consider failings, fears, loss, hurt.

Photo by Michael Kolster

4.04.2018

cbd update

This morning's deluge feels apropos after weeks of poor sleep and the stress of deliberating the next step in Calvin's epilepsy regimen; I felt the need for an emotional cleansing of sorts. After much inner thought and analysis, some discussion with Michael and a little with his nurse, I decided to discontinue Calvin's small dose of CBD cannabis oil, at least for now.

The change in treatment, which I commenced yesterday, came after too many nights of a restless child who'd sit up and whack his head against his bed's safety panel every ten to thirty minutes on average. Every time Calvin does this one of us has to get out of bed to go lay him back down and cover him back up. This can happen close to a dozen times each night, depriving us all of sleep. A couple of weeks ago I began wondering if, perhaps, this behavior could be due not only to Calvin's benzodiazepine withdrawal—he had his last dose just over a month ago—but to his CBD cannabis oil. I came to this conclusion knowing that CBD and benzodiazepines like Onfi, the one he was on for so many years and weaning for nearly four, utilize the same liver cytochrome P450 to metabolize and, thus, interact with each other. It occurred to me that in Onfi's absence, the CBD might have the latitude to act differently. 

I went onto social media and posed the question—whether CBD can seem to cause restlessness, agitation, insomnia or problems getting to sleep. The answers I got were mostly "yes" including various accounts saying that large doses of CBD are sedating while small doses of CBD can alert or stimulate. Some parents advised not to dose it after four or six p.m. Others said it depends on the strain, confirming what I know about sativas and hybrids being more stimulating than indica strains.

Having cut Calvin's CBD dose in half late last summer and again last fall, I noticed a reduction in partial complex seizures. In eliminating his CBD I hope to see less agitation, improved sleep and perhaps even fewer partial complex seizures. We will see. As always, cross your fingers and knock on wood. You'll be hearing from me.

Photo by Michael Kolster

4.01.2018

spring thanksgivings

fifty-degree days. soft earth yielding to my shovel. red-twigged maples. little trace of snow. robins and cardinals flitting about. hats and scarves off (mostly). croci opening. clean, shorn dog. sitting outside talking on the phone. lilies and tulips pushing their way up. sideways sunlight on inside hydrangeas. nights still cold enough for fires in the wood stove. streets clear enough for jogging. early evenings sunny and warm enough to sit on woody's front porch drinking bourbon. walking through the garden and back yard with calvin. sun-kissed cheeks. dusk at seven, dawn at six. azaleas greening up but some still purple. big dipper open for business. barbecued meats in the near future. ever-slightly-fewer seizures for calvin.

Photo by Michael Kolster 

3.28.2018

hope to hell i'm wrong

Calvin was so close to finishing up March with only two grand mals. But his damned epilepsy, like I was saying the other day, played catch-up again.

At school yesterday, Calvin's aides noted how often he tried dropping to the ground, both in the morning and in the afternoon. He was also loud, and by the end of the day, when he was in his johnny-jump-up, he was fingering madly and not quite his best self. Still, the rash on his buttocks—usually a common harbinger of seizures to come—was faint, and so I didn't think much of his chances of an imminent seizure.

Last night, Calvin stirred and sat up a couple of times, causing me to have to reposition him in bed. At the time, I considered giving him some THCA cannabis oil, but opted not to, thinking he didn't need it; I was wrong. At five a.m. he suffered a grand mal. I rubbed lavender oil on his spasming feet and dabbed some of it on the pillow under his nose. The seizure was very slightly shorter than most, but he woke half an hour later quite antsy, and it took him hours to calm down.

Eventually, Calvin improved enough for me to send him to school, which gave me the chance to take Nellie for a two-mile jog (I'm picking up "running" again now that most of the snow is gone.) My sense is, though, that Calvin is not out of the woods, and that he may be in for another bunch of partial seizures this week.

I hope to hell I'm wrong.

Last night in Calvin's jumper, photo by Michael Kolster

3.26.2018

a call to disarm

From the top of the hill in our handicap parking space next to the church, we could see the crowd gathering around the gazebo. Folks had taken the parade route, marching from the far side of the green bridge that crosses the river dividing our town from its neighbor. Hundreds had gathered, some of them in puffy jackets, scarves and hats, young and old, many holding handmade signs in honor of the cause. A handful of the signs read:

I want to read books not eulogies.

Disarm Hate.

School is for learning, not for lockdowns.

What part of "assault rifle" do you not understand?

End the silence, stop the violence.

From the start, Calvin was thankfully compliant, holding hands with me and Lauren as we walked down a stretch of road he'd never travelled along by foot. When we reached the crowd, however, there was little room to move, prompting Calvin to attempt dropping to the ground; I had to quickly find a place for us to sit down. Squeezing between onlookers, we inched ourselves awkwardly down a small hill still covered in snow, eventually making our way over to the gazebo. There we sat, off to the side on one of the bottom steps near an elderly woman resting there, a nubby scarf wrapped around her head. To keep Calvin calm and in one place I offered him a snack, wiping his face between bites of fruit and sips of juice. From our perch, we could see the entire crowd whose somber faces were fixed on the stage watching students read brief eulogies of the seventeen victims of the Marjory Stoneman Douglas High School shooting in Parkland, Florida last Valentine's Day. Under white skies, many of us wept.

Calvin was as patient as I could expect; he remained seated long enough for me to hear a few of the students' speeches condemning gun violence and vowing to vote out legislators bound to the NRA and unwilling to back gun-safety measures. Before we got up to leave, the woman seated next to us, who told us her name is Virginia, asked if Calvin is my only child. I replied, yes, explaining that was both good and bad. She looked as if she might cry. At that moment, I wondered how many of the kids killed in school massacres were their parents' only children and, because of Calvin's grave disabilities and chronic illness, I could begin—if only slightly—to imagine those parents' loss.

As Calvin and I skirted the crowd I spotted Lauren standing at the side of the road with a friend, both of them wielding signs for passing drivers to see. When we reached them, a middle-aged driver slowed his car to a stop, rolled down his passenger-side window and began shouting at us. His face became red and spittle flew from his mouth. With two fingers raised, he angrily defended what I assume he thinks are his unfettered second amendment rights, the twisted notion that the words "well-regulated militia" somehow guarantee his absolute right to own firearms, no questions asked.

On the drive home I remembered dropping Calvin off at school last Friday, noticing that the large windows of his street-side classroom were no longer papered over. The only remnant of their previous sheathing is a big and beautiful brown-paper tree, its trunk sturdy, its branches spreading wide and free. In seeing that the paper shroud had been removed, I felt grateful knowing that these terrorists and would-be terrorists—because their young, White, Christian, suburban, love-stricken or lonely or troubled souls should not exempt them from being labeled terrorists—don't have a stranglehold on our community or on our collective call to disarm.

3.20.2018

hemmed in

If you look closely, you'll see me in there somewhere, the edge of my mostly-auburn hair mingling with leaves and twigs, baggy bloodshot eye, wearing my shabby blue fleece robe that our neighbor thinks makes me look like a ward from an insane asylum. His estimation is fitting. One of us might be heading there, Calvin or I.

After yesterday's string of partial complex seizures—one every hour from eight-thirty until two—Calvin was impossibly restless on either side of last night's grand mal. This morning he is still unhinged, his repetitive humming and growling having not let up after hours on end. The kid is certifiably nuts, and he's sending me there. Both Michael and I tried sleeping with him, hoping to calm his inner demon so that everyone could get some rest, but because of Calvin's derangement, which must be some sort of benzo withdrawal symptom, sleep proved elusive for all of us ... again.

While walking Nellie yesterday in near-freezing, bone-chilling winds, I sat on a stump in the sun. It was then that I noticed my right eye hurting. That morning, Calvin had inadvertently stabbed it with several rigid fingers. Each time I blink, it hurts. Squinting, I looked out over fields, still covered in snow and flanked on all sides by naked oaks, maples and white pine of the same size—a wall of trees, really. Much of Maine makes me feel this way: walled in. These parts are mostly flat, and considering how close we are to the ocean as the crow flies, it takes some driving to get to a place with a decent vista much less a wide beach or clear view of the open sea. The experience I have at home raising Calvin, hemmed in by these four walls and by his condition, is the same one I have in Maine. I think I'll call it hemmed-in syndrome.

Perhaps if I were younger and not in love I'd run away from my reality. Last night things were very nearly as bad as it gets save trips to the hospital or the hours of night terrors Calvin sometimes suffers and we somehow cope with. It's these times when I imagine leaving my family behind and escaping to a place with mountains and hills right in my backyard, with ample and easy views of horizon meeting sea, of endless beaches minutes away and springlike weather year round. I'd go somewhere cosmopolitan where throngs of people busy the streets, where restaurants are bustling, where there are decent cafes and gorgeous parks in which to linger and explore, and interesting neighborhoods through which to tread for hours. I'm talking about a place like my beloved San Francisco. Maybe even LA. Perhaps some day I'll get back there and stay.

But for now I am here at home, today with my manic child. In doing endless loops with him around the house this morning, he stopped and I stood to block his incessant staring at the sun. Looking up, I saw this photo on the wall, one Michael made a couple of years ago. In its glass I saw my reflection, though dark, as well as windows through which I could see trees and light from outside. I exchanged tepid coffee for camera to capture the image. Then I dove into the windy scene of branches, leaves and sky—but for a divine moment no longer hemmed in—becoming a virtual traveler through time and space to a place without Calvin or angst, sleeplessness, seizures and mania, far beyond these walls which hem me in.


3.19.2018

getting back

I've mentioned before how epilepsy has a way of catching up, of getting back. Well, after twelve days with no seizures at all, Calvin just had his fifth scary partial complex seizure today. I say scary because, besides his pale lips and shallow breathing, he gets this look on his face as if he's seen a monster, or perhaps his imminent death (if he could comprehend such an abstract notion.) Frantically, he grabs for me, and his body begins to tremble and shake violently. These are not a grand mals; he remains conscious and his tremors are not rhythmic.

The extra doses of THCA oil I have given him have not prevented each subsequent seizure, so, grasping at other remedies, I took the bottle of CBDA vegetable glycerin the folks at Palmetto Harmony sent to me and gave Calvin ten drops. A month or two ago, I had an epiphany that perhaps CBDA oil might help Calvin if he continues to suffer too many seizures in the wake of finally eliminating his benzodiazepine. Right now, I've got the Mozart playing (I read a study, albeit a small one, which showed that listening to two hours of Mozart a day reduced seizures in a majority of subjects by as much as fifty percent) while watching my boy closely for any signs of another partial seizure.

My next big plan once we are a month or two away from Calvin's last dose of clobazam (we are just over three weeks past it now) is to stop his CBD oil to see if his partial seizures disappear or if it makes a difference at all; reducing it in the past has seemed to lessen his partial seizures. I may replace it later with a CBDA oil to see how that affects his seizures.

Thankfully, though, the past week or so Calvin has been an angel with the exception of some brief manic episodes on most days. He has been compliant and walking well and strong. He has been smiling and happy and enjoying hugs and kisses and tickles. He has been sleeping pretty well and has had only one grand mal seizure in nearly three weeks.

But like I said, epilepsy has a way of getting back. March, which came in like a lamb, might go out like a lion. And he had his sixth partial complex seizure just now.

Calvin during a similar partial complex seizure years ago

3.18.2018

a new view of the moon

I used to love the moon. When he was born, Calvin's face was moonlike—round, bright and creamy. Though I have developed a more complicated relationship with it since Calvin began having seizures, which sometimes seem triggered by the full moon's intense gravity, I still love the moon. Today, I appreciate it even more having seen this three-minute film reminding me of its beauty.

I was weeping long before the film maker said the words, "We should look up more often." Yes. Yes we should. And realize we all live on one Earth, and that life here is short.


A New View of the Moon from Alex Gorosh on Vimeo.

3.16.2018

life sucks, except when it doesn't

At just past one p.m. it's sunny and thirty-five degrees. No school and no nurse means a long day with Calvin, who has been ramping up to a seizure for several days, albeit in the midst of his best month-long stretch in the past year and a half.

Despite the gusty conditions, I decide we should venture downtown, so I bundle up the two of us and set out. Our first stop is Morning Glory health food, a small store wonderfully crammed with items leaving little room to move. Today, it's packed with shoppers perusing the aisles and waiting in line to purchase their goods. All I need is yogurt, but Calvin keeps trying to drop to the floor making it difficult to wait in line to pay. With my knee in his back to keep him upright, I notice our friend Daphne who, upon seeing me struggling with my stubborn boy, offers to let me cut in line. The two women behind her don't seem too happy at the notion, so Daphne buys the yogurt for me. I tell her that intend to pay her back doubly.

The main reason we've come downtown is so that Calvin can get in some walking beyond the small and repetitive loops he does inside the house. So although he's acting a bit obstinate, I choose to try him on the sidewalk. Flipping up his hood, I grasp his hand and begin walking into the frigid wind. Every few yards I wipe drool off of his rashy chin with the extra kerchief I grabbed before we left. At the end of the block we greet the same young homeless man we'd seen a few weeks back when the weather was springlike, and to whom I'd given a fistful of change I'd saved up in my purse for that very moment. The man looks to be no more than thirty. He is bundled in layers to ward off the cold, though still looks as if he might be shivering. I hope his beard helps to keep him warm. I tell him that this time I'm tapped out, but that it is nice to see him again. Then we bid him so long and continue on our way south.

Calvin walks four blocks to Local Market—further than he's ever walked with me downtown, and without balking once. We sit for five minutes to nibble on some wild rice, cranberry and edamame salad, and share a milk chocolate salted caramel. On our way back up the street we greet the homeless man again.

"I don't have cash but I do have a credit card," I tell him, "Can I buy you a sandwich at the Big Top?" referring to our favorite deli. "Come with us."

He agrees, folds up his cardboard sign and sets his plastic jug of water on top. When I ask, he tells me his name is James. I introduce myself and Calvin, explaining that James is Calvin's middle name, in part because we like it and it sounds good, in part because it's his dad's middle name, but mostly in honor of four James we know and love: Michael's dad, Michael's best friend in high school who died from leukemia, Michael's colleague, Muller, and our dear friend Garzelloni in San Francisco. Right then, Calvin attempts to drop, so I tell James about his epilepsy and how I am more than half expecting he might have a seizure tonight.

James tells me that someone very dear to him had epilepsy and died too young after having a grand mal seizure followed by a heart attack. Looking into his sunken eyes, I express my sorrow and ask when it happened. He tells me, and I can begin to imagine how difficult it must have been for him, wondering if it was what put him off track. I am reminded how the world should never judge folks who are homeless or struggling and asking for our help; we can never know their reality unless they tell us.

As we approach the Deli—my drooling, wobbling, nonverbal, incontinent, seizure-prone son toggled to me—James and I agree that life sucks, is hard, and that sometimes it is good. We express our shared contempt for the apparel line called Life Is Good, with its shitty little graphics of sun rays and flowers and Labrador retrievers and beach chairs and happy-as-fuck stick figures. He holds the deli door open for us and, as we squeeze by a crowd of other customers, I ask him what he wants to eat. The deli owner, our good buddy Tony, stands behind the counter and greets us.

"Can I have a bacon, egg and tomato on a bagel for James," I say, gesturing to my guest.

Tony, being one of the most generous guys I know, charges only two dollars to my card. Thanking him, I turn to James and say that I'd like to join him for lunch but that Calvin is pretty spent and not very good at sitting still. I pat James' shoulder and he smiles when I tell him it's nice seeing him again, to take care and I'll see him around. As I leave the deli, I wonder if I should turn back and try Calvin's patience; if I can find James again, next time I will.

Calvin makes it back through the health food store to the parking lot in the rear. When we reach the car he smiles (with relief?) and I praise him for what a stellar job he has done walking eight-plus blocks, and so willingly; six months ago he'd drop down after less than one block. My boy beams as I bend down to kiss his face repeatedly. Next to us, a younger woman—one who I think must be a mother—drives past in a minivan. Glancing out of the corner of her eye, she grins at us.

Life sure sucks. Except when it doesn't.

A similar scene from four years ago.

3.13.2018

the view from here

The past month has led me to be cautiously optimistic about what I've been hoping would happen the further Calvin gets from his last dose of benzodiazepine, and therefore from its withdrawal side effects: that, even though he's in the throws of puberty, he'll suffer fewer seizures as a result.

In the past thirty-three days, Calvin has had only three partial complex seizures. Usually, he has a handful to a dozen, sometimes more. As far as grand mals go, in the past four weeks he has had only four, which is very slightly less than his average four years ago when we began weaning his benzodiazepine from his all-time high dose of 35 milligrams per day. Nearly four years later, February 24th, 2018, he took his last dose. If Calvin can make it another two or thee days without any more seizures, it will be the fewest seizures he'll have had in a one-month span in over a year and a half, and on way less pharmaceutical medication.

I should mention that while I don't believe in jinxing things, I've experienced enough of what I'd call "good stretches," only to be devastated by a day or string of days when Calvin suffers multiple grand mals and/or partial complex seizures. As epilepsy rolls, it isn't beyond the realm of possibility that March, which came in like a lamb seizure-wise, could go out like a lion and be be one of his worst months on record.

But the view from here is looking pretty damn good. Cross fingers. Knock on wood.


3.12.2018

freedom to move

I am you. —Anonymous

Never apologize for being human. —James, Florida

We love you and feel your long days and sleepless nights. —Barbara

Be well and know I do not send prayers, I send Sistah Strength from my tiny little heart to yours. —Tammy, Virgin Islands

I'm pretty sure I wouldn't even like anyone who would win a Miss Congeniality contest. —Lorry, Maine

Thank you for being real. —Nancy

These were just some of the thoughtful responses to my last blog post titled, my apologies. Several readers couldn't make sense of why I penned such sentiments to the world. The letter of apology was a version of one I had written to a few individuals at Calvin's school, expressing regret for some sleep-deprived, emotionally-spent irritability I had displayed, in part because of a newly installed, apparently malfunctioning security-door system at Calvin's school meant to limit access, ostensibly of any potential school shooters.

Last Wednesday, I'd taken Calvin to school a couple of hours late after he had suffered his now-weekly grand mal seizure at three the same morning. In my exhaustion, having not slept since then, I was easily vexed after finding out the junior high's new entry button didn't seem to be working. Frustrated, Calvin and I had to wait outside in the cold, unnoticed (Calvin is not the greatest at standing still; because of the epilepsy drugs, his body needs to move.) When I was informed that I was, purportedly, the only one having a problem with the system, I became further irritated. Then, when a kind and well-intentioned person suggested she show me how to press the button correctly (it's pretty darn straight forward; it's a button ... you press it) I grew more perturbed. These events—the seizure, the sleep deprivation, the button glitch—were probably what pushed me over the edge of congeniality. Having already been distressed by the recent papering-over of the nice large windows in Calvin's street-side classroom, I went on to lament the tragedy that some boys and men in this nation are troubled to the point that they shoot up churchgoers and schoolchildren. In my mind, what makes matters worse is the notion that teachers be armed, an idea promoted mostly by those with a twisted interpretation of the Second Amendment—that we all have a right to own semiautomatic weapons, high-speed and armor-piercing ammunition—and those who think the answer to more gun injuries and deaths is to have more guns.

At a dinner with friends on Saturday night I shared my frustration about the papering-over of Calvin's classroom windows. I stressed the fact that our kids don't get enough of the outdoors, much less having the sight of trees and sky blocked out at school. Besides, the vast majority of children who are hurt and killed by guns, I learned recently, are not shot in school massacres. Papering over their windows, in my mind, is akin to letting these terrorists and would-be terrorists win; Parisians and Barcelonians don't avoid going to markets, cafes and concerts in the wake of mass shootings, because they want to deprive terrorists of the power to curb their freedom to move.

The image of countless armed guards and gun-packing teachers, and the papering over of school windows brings to mind prisons. Will we do away with outdoor recess for elementary school kids, too? What happens when guns discharge in the classroom accidentally? We all know they do. What if an armed school teacher feels "threatened" by a student? I've no doubt that the presence of more guns in schools will lead to senseless harm and death, predominantly of children of color. One must simply look at statistics, at the legions of Black schoolchildren who are disproportionately and more harshly punished than others, and at the scores of unarmed and innocent Black men, women and children who are gunned down by police while their armed White countrymen are handled with kid gloves; we know that too many White folks, whether consciously or not, wrongly see Black people—even children—as bad, dangerous and criminal.

I think back to those moments at Calvin's school, to when I was called back in because his ed-techs thought he might have suffered a partial complex seizure, to when the principal kindly re-introduced himself to a haggard, exasperated me, to when the door alarm problem was deemed mine to own. In the wake of the events, I wish we didn't have the tendency to jump to conclusions. I wish we weren't driven by fear. I wish there weren't fearmongers and liars and gluttons and powermongers, misogynists, bigots, bullies, despots and creeps to prey upon our goodness and our failings. I wish teachers were equipped with higher salaries, with adequate supplies, and with smaller classes to address the needs of neglected students who might otherwise want to do harm.

I saw a meme recently, one that cleverly and simply debunks the favorite gun-rights' argument, "guns don't kill people; people kill people." The meme reads:

If guns don't kill people, they don't protect people either.

Makes complete sense to me.

I hope people begin to understand the statistically significant fact that they and their loved ones are less safe in homes where guns are kept. I hope folks turn in their guns so we can melt them down. I hope soon we can tear down the brown paper that makes walls out of windows and prisons out of our children's schools. My son already lives in a prison of body and mind that limits his, and our, precious freedom to move.

Learn some facts about school shootings here.

Photo by Michael Kolster

3.09.2018

my apologies

Dear World,

Please accept my apologies for my recent less-than-composed behavior. It has been a rough row for me to hoe these past several days, weeks, months, years raising Calvin and dealing with the resulting significant and chronic sleep deprivation which colors my world. In trying to hold things together with Calvin's condition and limitations these past fourteen years, often the little things can, on the outside, seem most vexing.

Since Calvin’s birth, I have become someone who does not always work to conceal my true feelings in order to make life more comfortable for others. Life with a child who has such serious disabilities and chronic epilepsy has proven to be quite a hardship, so much so that I find the stresses and disappointments difficult, even unnecessary, to mask. Perhaps congeniality is paramount, but I wonder if being a slave to it above other concerns or emotions might eat me alive. Still, usually, I try. Most of the time, I hope, I am upbeat and kind.

Suffice to say I am sorry for being grumpy and curt in our recent encounters. Thank you especially for any patience and kindness you show me. It means the world.

Sincerely,
Christy

Photo by Michael Kolster

3.05.2018

close your eyes and smile

I feel a slight dull ache just behind my eyes. I'm tired, and I know why. Last night I had nearly too much fun—and champagne—at an annual Oscar party in Portland, Maine.

The gala, hosted by my homie Tim who goes by the alias Swifty (embodying the famous Hollywood agent Swifty Lazar) was his twenty-fifth soiree. About fifty of his dearest friends—forty-five, or so, of them men—packed the loft of a downtown sports bar. As usual, the gig came equipped with a half-dozen giant wall-mounted televisions, a few big speakers, bottomless glasses of champagne, a red carpet with a professional photographer, appetizers, a catered sit-down dinner and dessert. Guests arrived wearing their fanciest duds, including several chic tuxedos. With his signature waxed bald head and large black glasses, Swifty, acting as our master of ceremonies, guided us through the evening with clever commentary during each commercial break. He managed the evening's best-dressed male and female competitions, and gave a play-by-play of his guests' Oscar picks, all of us vying for golden trophies Swifty had especially engraved for the event.

After a delectable dinner including salad, pork loin, lasagna, baked whitefish and sautéed green beans, and following a few of the on-screen awards, I stepped up to the mike to read Swifty a limerick I'd written especially for him. It was meant as a sort of lifetime achievement award marking a quarter century of hosting the annual event. With some borrowed cheaters (my vision isn't what it used to be), and having previously sent Swifty's Limerick to a friend's smartphone, I read my poem from the device. My favorite stanza goes like this:

Swifty knows how to host a good show,
With a mike in his hand he’s a pro,
In his tux and black shoes,
He’s a Red Carpet schmooze,
More famous in Maine than fried dough.

With some effort, I managed to recite the first several verses without cracking myself up. But then I arrived at that last line above. Upon reading it, I doubled over, breathless in hysterics, my eyes tearing, even peeing my pants a tiny bit. It was difficult regaining composure, and with my body in a standing fetal position, I couldn't see the crowd though I could hear them erupt with laughter, causing me to lose it all together (though, thankfully not the entire contents of my bladder).

It was a perfect evening. No doubt it is hard to beat a room full of fit, handsome men—some of them couples, married and otherwise, others single—plus a handful of attractive and gregarious women. A few costumes were simply riotous. My chauffeurs came dressed as twin Swifties. Tim (a different Tim than our host) shaved his head bald and his wife Stephanie donned a champagne-colored swim cap, tucking her hair into it neatly. Both of them dressed in tuxedos and wore Swifty's signature black glasses. They had everyone cracking up, especially Swifty himself. Another friend came dressed as Tonya Harding from the movie I, Tonya. He wore a crappy wig yanked back into a tacky early-nineties ponytail. He'd smeared his face and neck in orangey makeup, wore a ladies figure skating costume with white lace-up boots resembling ice skates. His friend, Marieke, dressed as Tonya's mother, brushing her hair forward into crude bangs. She ran a piece of plastic tubing under her nose which masked as an oxygen tube. I haven't watched the movie yet, but seeing this hilarious couple, I didn't need to.

After a few hours of chatting, whistling, clapping and laughing, I said my goodbyes with many hugs and kisses. I crawled into bed just before eleven, my son Calvin sleeping soundly in the next room. Laying down my head, I closed my eyes and smiled, remembering the events of the night—the hamming in front of the camera, sitting on a gentleman stranger's knee for the group photo, meeting some new folks and seeing old friends, weeping a bit at some heartfelt toasts for our beloved host and emcee, chuckling again at all of the gags. In one happy night—the kind I need more of in light of the regrettable condition of our disabled and chronically ill son—I think I might have added ten years onto my life.

Hamming it up with Swifty and the ladies at last year's event

3.01.2018

a hard rain

A hard rain makes me think the sky is sobbing, like a huge release of the world's sorrow and pain, melting away the dirt and grime which has built up in our cities and towns. We got one in the early hours this morning, and I wished I had been able to join it. I don't weep nearly enough, don't feel that singular release of tension which sobbing provides. Mostly, I hold it together through the difficult circumstance that is taking care of our complex son.

This week, Tuesday and Wednesday nights were particularly hard. On the first we had to deal with another of Calvin's night terrors or migraines or withdrawal episodes—we can't be sure which one(s). For nearly three hours our boy was inconsolable. During these events, he screams and writhes and cries as if someone is cutting him up into little pieces. Extra THCA oil did nothing to dampen his misery. We abstained from trying rectal Valium since we have weaned him from benzodiazepines, reserving it for prolonged grand mals, which we hope Calvin will never again endure. But having no remedy is excruciating for us and for him. He thrashed in bed yanking fistfuls of my hair, head butting me, pushing his hand into my throat, trying to dive out of bed. I wonder where he goes when he feels like this.

The next night Calvin suffered two grand mals which, thankfully, is a rare occurrence. Bloody drool soaked his pillow. After the second seizure he was again inconsolable. His heart pounded in his chest. His hands were clammy. He thrashed and arched in bed again, though this time without the crazed screaming of the previous night. After 1:00 a.m., sleep was elusive for me. I wondered what he was feeling, thinking, seeing.

Yesterday was restful. It seemed Calvin was able to purge the awful physical and emotional feelings and/or hallucinations. His calm led me to think that maybe what he had endured was a stint of withdrawal, the result of having zero benzodiazepine in his bloodstream since quitting Onfi last Friday. Then this morning, while Calvin slept like a stone, the rain began, and for a moment it poured. I lied awake for a spell listening to it thrum the roof, one of my favorite sounds. I remembered Bob Dylan's song, A Hard Rain's A-Gonna Fall, soulfully performed by Patti Smith, which makes me cry every time I hear it. Its lyrics made me think about my blue-eyed son, my darling young one, and what I'd ask him if he could speak and understand. I wondered what he'd tell me if he could. I imagine he'd describe the kind of anguish, frustration, fear, pain and sorrow I've never experienced, even as his mother. I imagine he'd tell me about his hopes and dreams and what makes him happy. I imagine he'd describe the hard rains that have pelted him, and the ones which have soothed his soul. Perhaps, together, we'd sob.

2.23.2018

a bad day for benzos

When Calvin was three, we found ourselves in the pediatric intensive care unit—again. We'd been there more than a handful of times the previous year for clusters of seizures which led to prolonged fits, including one scary grand mal lasting forty-five minutes. Calvin's anticonvulsant medicine at the time, Depakote, was the third one to fail after Trileptal and Keppra. I had questioned his neurologist, who I'll refer to here as Dr. Rx, about his choice of Depakote for a child who, because of his age, developmental delay and type of seizures, was deemed high risk of developing liver failure from use of the drug. Dr. Rx downplayed the threat, prescribing it nonetheless.

When Depakote failed to thwart another dangerous spate of seizures, Dr. Rx decided to switch medications again. This time he chose to put Calvin on Lamictal, a drug requiring eight weeks of titration to avoid two dangerous, sometimes lethal rashes. The plan was to keep Calvin on Depakote while slowly increasing the Lamictal to a therapeutic level, at which point the Depakote would be eliminated. However, Calvin's blood work came back showing dangerously elevated liver functions. This discovery required the immediate discontinuation of the Depakote, thereby necessitating a second drug, Zonegran, to be put in place while the Lamictal was being titrated.

Why Dr. Rx didn't simply choose to switch to Zonegran instead of Lamictal, I don't know. What I do know is that I was relatively new to the game and hadn't the time or presence of mind to think it all through and press him on his decision. I was frightened for my seizing child, and perhaps too trusting of doctors in general. What made matters worse is that Dr. Rx also prescribed clonazepam, aka the notorious benzodiazepine Klonopin, to be used as a "bridge" drug, meant to fill the gap until the Lamictal got up to speed. But wasn't that why he prescribed Zonegran? I wish I'd pressed him harder on that issue, too. I wish I'd known what benzos were, how they worked, the risks they posed. Most regrettably, perhaps more so than any other decision made for our boy, Calvin traded one drug for three; most unfortunately one of those was a benzodiazepine.

Fast forward two years to the summer after Calvin began the ketogenic diet. The diet hadn't put a dent in his seizures, had caused him to gain a lot of weight, and increased the blood levels of his drugs, exacerbating their side effects. Still, we were loathe to give up the diet, though in hindsight we should have done so within months of initiating it when it was clear it wasn't working. Thinking clonazepam might be the culprit of some of Calvin's stupor, lethargy and ataxia, his new neurologist, Dr. T, thought it might be wise to wean him off of it. Over the course of just six weeks—a protocol I learned later is far too swift, particularly considering Calvin had been taking it for over a year—we began decreasing the drug. Calvin's seizures immediately doubled, hitting him every day or two. He stopped eating everything but yogurt, disrupting the delicate balance of the diet. He forgot how to swallow his medicines, holding them in his mouth for up to ninety minutes at a time. Something had to give.

Four drugs were recommended to us as options. Two were new ones on the market, which gave me pause not knowing their long-term side effects. A third was known for causing fatal aplastic anemia. The fourth was a benzodiazepine derivative called clobazam, aka Onfi. Dr. T told us, as a derivative, Onfi is thought to be less of a muscle relaxant and less addictive than other benzos, and that it might even assist Calvin off of his Klonopin. With some trepidation, we took the bait.

The following month Calvin had no seizures. Then, in subsequent months they began appearing again. First one, then two, then three and so on. Each time we increased his dose. This pattern continued for months on end as we were simultaneously weaning him from the ketogenic diet, the Zonegran, then finally the Lamictal. Eventually, his Onfi dose reached 35 milligrams per day, an adult dose frighteningly high for a child weighing less than forty pounds, and an amount well over what we knew to be therapeutic. Calvin remained on this dose for four years while we added two other drugs, Banzel, then Keppra, again. The drug cocktail worked well one summer; Calvin went 78 days without any seizures, but what suffered was his behavior, which had become intolerable. He shrieked much of the day, particularly when in the car and when being fed. His sleep was erratic; insomnia a major problem. He woke up crying every morning. He couldn't sit still. At one point he became anorexic, losing ten percent of his body weight in a single month. I was reduced to tears most every day. We were all miserable.

Finally, Michael and I decided we needed to focus less on seizure control and more on quality of life since ours was rapidly deteriorating. We chose to begin eliminating drugs. The first to go was Banzel, which was relatively easy. Having done some in-depth research, I discovered cannabis as therapy for seizures and began making a homemade THCA oil and giving it to Calvin. I read some more about the trouble with benzodiazepines, their tendency to cause paradoxical reactions in kids such as hyperactivity, insomnia, agitation, restlessness. I stumbled upon the Ashton Manual, the bible for benzodiazepine withdrawal, and we began weaning the medication on a schedule we developed, wisely, without advice from any neurologist.

I'm happy to report, today was a bad day for benzos; tonight, about an hour ago, Calvin took his last dose! WOOO HOOOO!

What I hoped might be a one- to two-year withdrawal became a wean just shy of four years. But with the help of the cannabis oil, we've seen Calvin's daytime grand mals disappear. On most nights now, our boy is sleeping incredibly well. Benzodiazepine withdrawal effects can be lingering—some of them perhaps permanent—so he remains restless, though is legions better than before. His behavior is less and less erratic. He can walk on his own in the absence of obstacles and where the terrain is level. He is less stubborn, less manic, not nearly as loud, and has more stamina. He is having more seizures each month, though—one or two extra grand mals at night and a smattering of daytime partial complex ones—but as the benzo fog recedes, and as we move away from his last dose I expect to see fewer seizures.

Note: I have heard from some parents that benzos are the only drugs that seem to work for children who have the most serious cases of epilepsy. But if you can avoid them, by all means, do.

With benzos behind us, hoping we will see Calvin more often looking like this.

2.21.2018

changes

It couldn't have been clearer to me that Calvin would have a seizure by this morning. In his own way, he tells me. I just have to watch and listen. Yesterday, he showed nearly all of the usual, and some not-as-usual, harbingers: bloody nose, whininess, major finger snapping and other repetitive behaviors, pacing, warm hands, uber-rashy butt, agitation, restlessness, intensity, detachment.

At five a.m. it came. Perhaps the extra doses of concentrated THCA cannabis oil just past midnight and at three o'clock impeded its arrival. As I spooned with him after the seizure, I felt how calm his body was, noting the absence of what I call aftershocks—shivering and shudders which often occur in the wake of grand mal seizures. I had no doubt THCA had something to do with his serenity.

Mostly awake since three and therefore exhausted, I still had a hard time relaxing my mind. Lying there, again I considered the world. I feel it going through its own convulsions, having more than its share of anger, hatred and greed, its racists, abusers, tyrants and liars bent on destroying humanity at nearly any cost, lusting for power through intrigue, attempting to avoid capture. What drives these men to such extremes, these gun-toting terrorists, abusers, trolls and bots, these conspiracy theorists, these despots and deceitful oligarchs? Meanwhile, in my arms lies one of the purest souls on earth, a boy who inspires love and compassion, requires my mindfulness and who, though he tries my patience at times, makes me want to live simply and be a better person every day.

Yesterday, when reading about the Marjory Stoneman Douglas high school students traveling to the Florida state capital to express their desire for the legislature to pass stricter gun control laws, I thought about Calvin. I imagined him being crammed into a closet with twenty others his age, little room to breathe, waiting silently for ninety minutes until the shooter fled the scene. I imagined Calvin—if he were a typical kid—fearing for his life, texting us, being riddled with bullets or sobbing when finally set free. I imagine him, later, boarding a bus with his classmates to march on state capitals and Washington DC demanding changes to gun policy. He'd be that kid. He'd change the world. No doubt he has, in his own way, inspired such things in others and in me.

A former teacher—one who has never met Calvin nor could comprehend the depth of his disability, who had no children of his own much less a non-verbal, incontinent, uncoordinated, delayed, epileptic one—once asked me why I named my blog Calvin's Story, or rather, why I didn't write more often from my son's perspective since it bears his name. I recall being slightly irked and thinking, perhaps even saying to him, that Calvin informs my world, and since he lacks the ability to speak, I must lend my voice to tell his story—which, because we are so inextricably linked, is ours—the one he might have told if he had been born normal. In short, I have to dream. I revisit that question from time to time, checking in with myself to ensure I am doing justice to Calvin's unusual and complicated childhood experience, exploring notions of my own with regard to him hoping I can extract some meaning from it—which is not to say I am searching for answers as to why he was born so afflicted. (Shit just happens, with no inherent reason, no purpose. Prayers prove useless, the absence of God in schools a lame excuse for mass shootings; pedophile priests still lurk in churches.)

This morning, I considered our children's truths and stories as told by themselves and their parents when I heard a former GOP congressman expressing doubt that the teenagers organizing a nationwide rally against guns—thinking the students incapable because of their youth—are doing so of their own volition. Instead, he suggested that they are mere pawns of leftist organizations. Clearly the response was from someone too detached to understand young, informed, impassioned minds, or too partisan, ignorant or cowardly to think, appear or admit otherwise. His lame statement led me to recall the David Bowie lyric I read yesterday from his song Changes:

And these children that you spit on, as they try to change their worlds, are immune to your consultations, they're quite aware of what they're going through.

I went on to ponder the right-wing conspiracy theorists who've shamefully suggested that the Florida school shooting, along with the Sandy Hook massacre, was a government ruse and that the students are actors. I wonder what in the hell these losers, jerks and trolls want to do to the virtuousness of the world. I can only hope, and work, to squash them all and liberate the truth, and soon.

And so, as my son spasms, so does the world. But there are elixirs. There is cannabis to fight seizures, there are fathers to soothe and mothers to spoon, there are parents and educators teaching their kids honesty and virtue even in—and perhaps owing to—the absence of god in schools, because it is very simply the right thing to do. There is love to conquer hate, knowledge to erase ignorance, truth and fact to crush lies and rumors, compassion to smash fearmongers, misers and fools, virtue to rule over vice, and the voices, bodies and ballots of youth to enlighten, change and lead us, to liberate and save a convulsing world.


2.16.2018

gun-shy

My child would not know when or where to run and hide. He could not be kept quiet. He could not plead for mercy from the shooter to spare his life. He could not tackle an aggressor, shield a friend, close and lock a door, flee outside.

I ponder these terrorists, most of them white and male—extremists, racists, bigot, xenophobes—many, perhaps, with unstable minds. I dread the notion of a similar tragedy happening in my town, at my son's school where he'd be an easy target, easily sought out, easily found, easily gunned down.

No doubt the millions of thoughts and prayers have done nothing to prevent these tragedies, these mass shootings by angry boys and men who wield AK-15s. Perhaps it's true, to some degree, mental health is a problem, but insane people live in every corner of the world while our nation is an outlier when it comes to massacres and other deaths with guns.

Many conservatives doubt any measure can prevent mass shootings from occurring, save arming everyone. The fact is doing nothing ensures the epidemic perseveres. We've witnessed that truth too many times.

The second amendment was not intended to protect one's right to bear arms for sport or self protection. It was meant to form a well-regulated militia. Read the words. We should be gun-shy. We ought to stop fetishizing guns. We must reject the unfounded fear of others, of people different from ourselves. We must not yield to paranoia. We must not hold the perceived right to bear arms in higher regard than the right of innocents to their life, liberty and pursuit of happiness. We must change policy to reflect those values, to protect our children.

In this nation, too many people take their lives with guns. Too many toddlers shoot themselves, their siblings, parents, friends. Too many women are shot by abusive partners. Too many others are shot accidentally. We must stop this madness, change our nation's unhinged thirst for firearms. We should not think it's cool to own a gun.

But I feel a sea change coming—a blue tsunami—spawned by the wise, progressive youth in our nation. No doubt they'll be reshaping culture, climate and policy, and will curb the appeal and sale and use of guns.

Calvin years ago.

2.13.2018

whimpering

Ten p.m. Outside temps dip well below freezing, ice fractals crackle on the tops of blackish pools. The wind whips windows and tousles brittle limbs. Gray foxes, following footstep ghosts, trace a crusty sludge path in the snow around the house. Inside upstairs, Lincoln in the Bardo has been closed and set upon a dresser. Lights have been switched off. Three heads are weary and resting on ticking-striped pillows stuffed with goose down, plumped and rumpled into shapes made for dreaming.

Readily, sleep sets in.

In the room next door our boy cries out. Not a cry as much a spell of sickening retches as the seizure takes hold. Limbs stiffen. Breath snuffed out. Lightening-quick flickers of eyelids and gaping mouth, trembling limbs. Cheeks flush, lips tinge blue, fingers and lids pale and gray. Oxygen proves elusive. Consciousness gone. Guts twist and knot. Linens tint with bloody drool. Frankincense in drops on soles and toes.

Two to three minutes of this. Longer than most.

In its wake, every exhale is a whimper. Never heard this before. Misery in his mewling feels eternal. Lasts nearly half an hour. I ponder its root.

Bitten tongue? Jammed finger? Broken toe? Piercing ache or cramp? Frightened, muddled boy?

He puts his arms around my neck. Pulls me close. Knees up to his chest, still whimpering like a pup. I ask him in a whisper what is wrong. I murmur I am sorry. I stroke his face, rest my hand upon his hip. In the dim light, I can see him drifting off. Eyes closed, I heed his every breath.

            

2.12.2018

keen ideas

For three days in a row Calvin slept in my lap downstairs on the plush couch, waking only for a few moments at a time before laying his head down again. No fever. No cough. No runny nose. Just refusing food and not drinking enough. The few times he walked, he was weak and wobbly, and was spacey and pale at times as he sat idle in the middle of the floor. If it were not for the fact that he began showing signs of some kind of ailment prior to the seizures he had on his birthday morn, I'd think perhaps the culprit were my most recent batch of THCA cannabis oil which is slightly hazier than usual having used a different kind of oil.

Today Calvin seems much better, and although his balance is still off, he went to school and ate most of the food I packed for him, which is no small amount (my boy seems to have a fast metabolism.)

Lately, I've been more keen on the idea of taking care of my own body a bit better than I have these last several years. A couple of loved one's radical health issues, which landed them each in the hospital for surgery through no fault of their own, got me thinking—Michael and Calvin would be totally fucked if anything happened to me. With that angst-causing thought in mind, I'm keen on sleeping more, keen on drinking less alcohol, walking more, eating more real foods like fruit and fewer ones like chips. I'm keen on consuming more vegetarian meals if I can convince the chef of the house to let up a little on those winter comfort foods—namely pork and lamb—which he likes to cook, and I like to eat so much.

I used to regularly feel ten or fifteen years younger than my age. These days nearly all of my fifty-four years are palpable to me. Perhaps this feeling is partly due to the long winter, to being trapped inside and unable to move my body as much as I'd like to outdoors, what with all the ice and snow (I don't like exercising in groups or swimming indoors.) Perhaps it's these extra handful of pounds hugging my body and not letting go. No doubt it's cumulative sleep deprivation and the lack of sunshine we've had this winter in an otherwise decently sunny town. Chances are the stress of raising Calvin causes more gray hair to grow.

Thankfully, spring is on its way. And in less than two weeks Calvin will take his very last dose of benzodiazepine after ingesting them since he was three—nearly eleven years. Just that will liberate me! Hopefully he'll come off the bus in a few minutes with a smile on his face and walking steady and tall. With luck, as he grows (he is a foot shorter than I and nearly half my weight) I will become stronger still, something I'm very keen to do.

Photo by Michael Kolster