12.06.2016

day six

He tipped over in the bath as the water drained from the tub. He shouldn't have; it was shallow. I let the our new nurse-in-training know that this was one of the signs I often see the night before a grand mal. It had only been five days since his last big seizure, so I mentioned that this omen—in and of itself—was not necessarily cause for alarm.

After I put Calvin to bed I noted in the daily journal many of the day's other harbingers:

*repetitive humming *not at baseline *warm red ear *didn't finish lunch *loud at home *poor balance *tons of eye poking *unusual screech in bathtub *rashy butt *tons of drooling *lots of rocking in chair at school *needs to poop *confused at 6:00 pm (walking in circles) 

Despite the fact that I gave him a little extra THCA cannabis oil at bedtime, hoping it might thwart another seizure (he'd had two partial seizures the day before), he suffered a grand mal just before five this morning. I never know what triggers them or why sometimes they are more frequent than at others.

As the months pass, Calvin grows, and we reduce his benzodiazepine slowly, he is gradually having slightly more seizures. My fear of this trend causes me to want to stop the benzo wean completely, but I know if I do he will likely continue to suffer habituation and withdrawals. The only way to free him of these, in my best estimation, is to get him completely off of the benzo once and for all. So I push my fears aside and continue chipping away at his dose by tiny bits, hoping his brain won't suffer such bad hits.

I'm trying to think ahead to a time where, if things get much worse, we might need to turn again to the pharmaceutical world for some new and promising med. Besides the benzo and two cannabis oils, Calvin is on no small dose of Keppra, which is why I want him off of the benzo in case we want to start him on another drug. My hope is that Epidiolex might be available soon, the drug made from plant-derived cannabidiol (CBD) which is in trial right now. It seems the logical drug to choose considering Calvin has failed ten chemical ones, plus he has responded so well to the THCA oil I make.

He's at school now, having gone in late today. Extra morning THCA oil seems to work to keep the partial seizures at bay. Yesterday, we had our first significant snow, and it's on the ground melting. I kid myself by saying that it's only three months until spring. I hope the winter takes it easy on us this year. We could use a break.

Photo by Michael Kolster

12.03.2016

under my skin

It’s a Saturday night and I’m feeling frustrated, angry and sorry for myself. While other mothers might’ve slept in past six or taken their twelve and thirteen-year-old sons to hockey practice or out to breakfast or shopping for clothes, or perhaps sent them to a friend’s house to play, I took care of an agitated kid whose misery I couldn’t translate. I wrote in my daily "Calvin" journal:

*banging a ton *intense *hyper *very stubborn trying to walk him past Woody’s house *seizure breath *terrible job at grocer WORST BEHAVIOR IN A LONG TIME TODAY. exasperating. *warm red ears SUPER AGITATED *not eating or drinking much *grousing like something hurts ... feels like another seizure coming already

A few times I lost my patience, raising my voice at my howling kid, whose constant whining was getting under my skin.

By evening, a half hour or so after I gave Calvin his nighttime dose of benzodiazepine, he had calmed down some, and we’d put him in his bed to play with his toys for a bit while we fixed things for supper. When we went back upstairs to ready him for bed and to give him his last few meds, we found him sitting in his own shit, which had squished out of his diaper, up his back and inside his shirt, smeared onto his linens and onto some of his toys. And though the mess could have been much worse—and it has in the past—it still added to the weight of a miserable day.

Earlier, I had watched Calvin squirm in Michael’s arms, watched his pendulous eyes rhythmically shift and dart the way they're prone to do. I imagined what we would be doing had Calvin been born a typical child instead of one missing a bunch of the white matter in his brain, instead of suffering seizures, instead of being addicted to antiepileptic drugs that don't work to stop the fits. Perhaps he’d be helping me chop tomatoes and avocado for a salad, or maybe he’d be scrolling through some of his Dad’s new photographs. Maybe he’d be reclined in front of the fire reading a new book, or perhaps he'd be outside walking Nellie, or curled up on the couch doing some homework, or just hanging out telling us about his day. And, at bedtime, he’d get into his own pajamas and brush his own teeth and crawl into his regular old bed and pull the covers up all by himself.

Then he'd tell me with real words—the kind that would soak luxuriously under my skinI love you Mom, good night, I'll see you in the morning.

Photo by Michael Kolster

11.30.2016

how we roll

After pausing my son’s ridiculously protracted benzodiazepine wean for two months due to a pretty bad early November, Calvin went eleven days without any seizures; he didn’t even have any partial ones. The stretch felt luxurious and was sprinkled with only a few each of brief tantrums, manic spells and restless nights. And though he suffered a grand mal this morning just before four, he recovered well enough by ten o’clock to send him to school.

During the first two years of Calvin’s benzo (clobazam, aka Onfi) wean, we gradually eliminated thirty milligrams of his overall daily dose of thirty-five mgs (which is equal to an adult dose but okayed by a neurologist for a ten-year-old who weighed less than fifty pounds, despite the habituation and side effects we believed it was causing). Despite what we thought was a slow wean, Calvin suffered large spates of seizures, one hospitalization because of them, and several horrendous incidents of withdrawal in which he writhed in pain for hours at a time, looking at me through his tears as if asking me to make it stop. He was in such misery I thought he might be passing a kidney stone. Having slowed the wean as a result, however, and looking back, I now know those episodes were due to an overly swift withdrawal. So, we ratcheted back on the size and frequency of the reductions, and the painful spates disappeared.

In the past year we have reduced Calvin's daily benzo dose from five milligrams to just three, which is less than ten percent of his highest dose if we account for his weight gain. And though I’m proud and relieved to have gotten this far, and eager as ever to get him off, I’m afraid to eliminate it too quickly. So, at the current rate it will take at least one more year—for a total wean lasting three-and-a-half to four years—to get him completely off of the drug safely and comfortably.

In the meantime, I have adjusted his Keppra slightly up, as well as his THCA cannabis oil, both with hope of curbing his partial seizures at least. I’ve kept his CBD cannabis oil the same to limit the number of variables. Prior to this regime, in any given month Calvin experienced four to five grand mal seizures and a dozen—give or take a few—partials occurring on eight or nine days of the month, which means he's missed a lot of school. And while this is far from ideal, it is not too much worse than his worst months when he was taking ten times as much benzodiazepine. And of equal if not greater importance is the vast improvement we have seen in his behavior, sleep and focus while taking the smaller dose. And, hopefully, the increased Keppra and THCA will allow him to have more good stints like this recent one.

So, we will keep on truckin’, but we’ll stop when we need to, rest for a while, get our bearings, and then keep on truckin' again. With epilepsy, it's just how we roll.

If you cannot view the video below, you can watch it on You Tube here.

11.28.2016

sorry truth

One of my deepest fears is waking up to find my twelve-year-old son Calvin in his bed, lifeless. To some, it may seem a foolish or exaggerated worry, but to parents of children with epilepsy, particularly the kind Calvin suffers, which is resistant to medication, it's the sorry truth. In a given year, Calvin has a one in ten chance of meeting this end due to SUDEP: Sudden Unexpected Death in Epilepsy, which I liken to SIDS, but for people with epilepsy.

What might be more vexing and emotionally complicated, though, is the thought that our severely disabled, non-verbal boy will outlive us. Before the presidential election, I read an essay by the father of a boy with autism. He implored his readers not to vote for Trump whose policies, he feared, might threaten the services and health care protections enjoyed by their son. He went on to explain that he and his wife hoped that they would outlive their son by just one day because of their deep-seated angst that no one would be able to care for him in ways necessary for his health, happiness and well-being.

Daily, perhaps, I have similar worries. What if I have a fatal heart attack or stroke or fall down the stairs and break my neck, particularly if Calvin were with me. Who would care for my precarious child in the fragile moments after such a malady? Would he fall down the stairs trying to navigate them by himself? Would he get distracted by the sun streaming in through the window and let go of the handrail? Would he trip on the carpet and crash head first into the radiator? Would he accidentally turn on the stove, grab a knife by its blade, accidentally put a hand through a window? Imagining his confusion, want and need in such a scenario makes me quake.

My angst treads deeper, though.

Who would love my boy? Who would delight in hugging and kissing him and accepting his many embraces? Who would let him curl up in a fetal position beside them, his arms tightly clasped around their neck? Who would endure his drool on their hands and face, the grating sound of his oft grinding teeth, his shrieking, imbalance, sudden manic outbursts, seizures. Who would know what medicines to give him, how much of them and when? Who would make his cannabis oil? Who would know when he needs to be burped? Who would know just where he is most ticklish, if he is hungry, thirsty or needs to poop? Who would change his diapers? Who would be tender and loving to my growing baby of a boy?

Calvin is one of the reasons I continue to mourn the recent election and worry about the most vulnerable and identifiable who are left reeling in its wake—the Disabled, People of Color, immigrants, Latinos, LGBTQ people, Muslims, women. I’m baffled that so many Americans still don’t recognize their Straight White privilege, and I fear others who assert their White supremacy. I'm dismayed that the worry and anger some of us are feeling about the prospect of the impending administration—one that is shaping up to be quite ugly and menacing to so many—is contemptuously laughed off by the small-minded as mere childish tantrums of sore losers. The smug notion and its authors sicken me.

Many wise people have said that a nation is judged by the way it treats its most vulnerable; no doubt Mr. Trump and his goons are already taking us to a failing grade: F for fucked up, and I don't mean that lightly.

As a woman, who as a girl endured bullying and ridicule by boys and men, who as a teen survived sexual harassment by a strange young man, who as a woman was grabbed in the crotch by a passerby, and was again sexually harassed by a perverted White guy, who’s been neglected, interrupted, steamrolled, mistreated, scapegoated and glossed-over by White male relations and peers, as the friend of Black men and women who have been maligned and mistreated, and of Muslim women, Jewish, Latino and gay friends who are scared, and as the mother of a severely disabled child with a chronic illness who has at times been gawked at, scorned, sidelined, misunderstood and neglected by professionals, I worry about what is to come under Trump.

Like the prospect of my son's untimely death, my worry for the most vulnerable of us under the next administration is not foolish or exaggerated ... it's the sorry truth.

Photo by Michael Kolster

11.24.2016

thanksgivings

hubby. food. shelter. water. heat. peace. the kid. sisterhood. grace in the face of loss. kindness. wood stove fires. calvin's smiles and hugs. gatherings. nellie. community. pink sunrise. love. brothers. good night's sleep. my peeps. civil rights. dry-brined birds. philanthropy. neighbors who rake our leaves. rain. bourbon. handsome hats that girlfriends knit. charity. quiet streets. good reads. humor. pie galore. forgiveness. sky. gma and gpa and the rest of the gang. reflection. compassion. cannabis oil. hope. rhododendrons. free speech. diversity. twilight. candlelight. stars. goose down. brussels spouts. art. beauty. hmong stuffing. writing. empathy. wine. music. justice. rivers. sisters. trees.

Photo by Michael Kolster

11.22.2016

underneath a sky that's ever falling down

Here we are
Stuck by this river,
You and I
Underneath a sky that's ever falling down, down, down
Ever falling down

The verse floats in an expanse of white adjacent to a similar page with only two typed words: For Christy. I wiped a tear away before it might have stained my husband’s newly published book, Take Me To The River, a heavy one splayed open in my lap.

The words seeped into me. I felt them ache in my bones. I do feel stuck ... in this town by the river. The sky does feel as if it is ever falling down—Calvin’s increased and relentless seizures, his many missed days of school, the recent election of a man whom I wager may never earn the respect I require to call him my president. Life feels bleak. No way out. This sinking feeling.

I woke up to the season’s first dusting of snow. Though I’ve relished the dry, mild days this autumn, the white was a welcome change to the drab drudgery of same. My boy is having seizures on average every couple-few days. The grand mals, albeit reliable, come slightly less frequently, though still too often. I wish I knew the culprit, and I find myself asking the same questions:

is it the moon? the barometric pressure? puberty? is it too much medication? not enough? is it the benzo withdrawal? a growth spurt? lack of sleep? constipation? stress of the election?

Never can I know. But whatever the culprit, we are stuck, Calvin and I. We are literally and figuratively going nowhere, spinning our wheels in this goofy little town in Maine, my boy and I treading in the same sorry circles that we have for years, forever within inches of each other.

Yes, the sky is ever falling down. As if the election outcome was not bad enough, last week I had a knock-down, drag-out fight with someone I love. He began by playfully needling me about the protesters, many who are from marginalized and vulnerable communities—women, Latinos, African Americans, LGBTQ people, the Disabled. At first I chuckled, then mentioned his White privilege. He bristled, stated the obvious—that people are born equal—then went on to say that folks simply need to work hard to get ahead. I emphasized that, although we are born equal, we come into this world in unequal circumstances, some of us with clear advantages and some without (I think of Calvin). He rebuffed well-documented truth that being White means enjoying better odds of avoiding stop-and-frisk, harassment, hate crimes, arrest, fines, incarceration, harsh sentencing and capital punishment. Being White means enjoying a greater chance at being picked up by a taxi cab, renting an apartment or securing one on Airbnb, getting that job interview, getting the job, getting the promotion, a better chance at being given a loan and being free to vote. Our White children enjoy better odds of avoiding corporeal punishment at school, bullying, detention, suspension, being hand cuffed, being shot by a neighborhood watchman for wearing a hoodie, or by the police for playing with a toy gun. When you are a Person of Color, especially if you are Black, it doesn't matter if you are a hard worker, a veteran, a student at Yale or a Harvard professor; to some, you're considered fair game.

During most of our conversation I remained calm despite his frequent interruptions; I pride myself on being capable of having an adult exchange even about controversial subjects. Partway through, though, he began raising his voice and barking, as he is sometimes wont to doChristy! Christy! Christy! He began steamrolling over me. From there it escalated, because I wasn’t about to submit to such lame ass bullshit harassment. In the end, I was screaming at him full-throttle just as he was yelling, until I heard the line drop.

Stepping into the cold yesterday, tiny flakes falling over me like ash, I reflected on that conversation. What I saw clearly in play this time was the sexism—the bullying, interruption, false accusation—regrettably all too familiar and yet only now palpable to me. Nellie pulled me along at a good clip. I set her free at the fields where she ran like mad with the other dogs. I often marvel at the female creature—fierce, strong, confident, fearless. She could tear a male opponent apart; she receives no social cues deriding her gender, faces no imposed barriers or hurdles, isn’t defined by her features. In many ways, she and I are the same; I have lifted my weight in iron. In other ways she has the advantage; I was born into a patriarchy.

Once home, I bought an airline ticket to Washington DC for a flight the day after what's-his-face's inauguration. If Calvin were healthy, able-bodied and cognizant of such things, at just shy of thirteen-years-old, no doubt he'd be coming along. It grieves me deeply that I cannot bring him. I’ll be there not only to protest the inauguration of a miscreant—a dangerous man, a clown, a sexual predator, a bigoted, greedy, misogynistic, racist, xenophobic, tax-dodging, fraudulent white supremacist—but mostly to celebrate women, and our rights, alongside other fierce, strong, fearless humans. We'll all be there underneath the same sky that, of late, has been falling down, down, down. But we'll use our love for each other and our righteous strength in numbers to lift it up to where it belongs.

March on Washington, 1963

11.16.2016

bitter pills

On this rainy day, my boy is home with me again, suffering a spate of partial seizures—nearly a dozen—which I have yet to quell. While none of them have been grand mals, they’ve included scary ones in which he trembles and kicks violently, a terrified look on his face as if he’s seen a demon. I loathe them all.

I often think of epilepsy as a fiend. It berates Calvin’s brain, crushes his possibilities, has quashed his ability to speak. The drugs he must take—which don’t work to fully control his fits—adversely affect his behavior, his cognition, his coordination and gait. The fiend has robbed us of many of our dreams, pushed us to the brink of so many things—society and sanity come to mind—and into relative quarantine where we are literally imprisoned, in our state (because of cannabis prohibition) and, on days like today, between these walls.

In the days since the election, in the wee hours after Calvin’s predawn seizures, I lie awake, weary and worrying about our country. I realize I feel similarly about epilepsy as I do the incoming administration: I fear what it might mean for our most vulnerable. With the president-elect's most recent, antisemitic advisory pick, I'm reminded of his own penchant for eugenics, reminiscent of Hitler’s loathing of Jewish people and innocents like Calvin, which lead to their extermination. I witness the narcissist's bizarre lust for attention, his repulsive habit with women, his abhorrent treatment of others, and his contempt for non-Whites as an assault on everything decent in America. And though I have not been personally or literally attacked, I feel the wounds of other women, of Jewish and Black and Muslim and Immigrant and Mexican and Disabled Americans.

While writing this, I came across the photo of the painting below made by a Bowdoin College student in the wake of the election. In its rawness, I see anger and frustration, the whitewashing of our fifty states, the splintering and marring of a nation. It made me wonder, if Calvin could hold a brush—if the epilepsy didn’t stifle his forward movement toward a better, stronger place—if he’d be painting something similar, making his mark and expressing his disaffection.

As with epilepsy, I loathe this president-elect's candid hopes to berate his critics, to crush immigrants, to torture foes, to punish women, to limit speech in the form of free press and peaceful protest. Like a toxic drug, I see evidence of how his rhetoric has adversely affected the behavior of some in his body of followers. Like a chronic disease, I wonder if this man and his minions will rob us of our rights and dreams, push us to the brink—society and sanity come to mind. Will he round up and imprison our beloveds? Will he blight us and the respect of the world?

Like a contagion, his contempt and hatred is spreading. I've heard privileged people call the peaceful protests of those who oppose the crude and immoral things this man has said and done as "nothing more than temper tantrums" and a "crybaby diaper brigade." Their smugness and apathy for those who are afraid, angry, hurting and simply exercising their first amendment rights, like the bitter pills Calvin takes, do nothing to heal, yet leave a horrid taste.

Untitled, by Frankie Ahrens, acrylic on wood scrap