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