10.17.2018

of monsters and medicine

Writing would be so much easier if not for my son—my non-verbal, incontinent, legally blind, autistic, disabled, seizure-prone, drugged-up child who, as I've written before, sometimes reminds me of a mini Frankenstein's monster. Come to think of it, everything would be easier—sleeping, waking, eating, traveling. I'm up at least a handful of times every night to check on and reposition my boy. I often wake to the nightmare of his grand mal and partial complex seizures. I can never sleep in past 6:30 since he must get his antiepileptic drugs first thing in the morning, and he's really a two-person child. Since Calvin goes to bed early and often eats different food than we do, we never eat together as a family except on Thanksgiving. And because Calvin is prone to get or fall out of bed and hurt himself, and therefore sleeps in a safety bed, we haven't figured out how to travel with him, plus we can't legally take him on a plane because of the cannabis oil used to treat his epilepsy.

Going back to writing, today I got my third rejection from The Sun magazine for a piece I submitted years ago titled Of Monsters and Medicine, about me and grief, Dad and his cancer, Mom and her Alzheimer's, Calvin and his epilepsy, and cannabis as medicine for all. Four years ago I was ecstatic when the magazine published my first piece in print, Faith of My Father, which appeared in the August 14th issue next to an excerpt from a book written by Gary Snyder.

Earlier this month, The Sun's managing editor assured me she'd soon have an answer as to whether they'd accept my Monster piece for publication, which I had written in response to their request for writing on caregiving, medicine and alternative therapies. I thought my prose would be a good fit. I guess I was wrong.

The rejection hit me harder than expected, probably because I am so goddamn sleep deprived and since Calvin has had such a sucky month seizure-wise. He's had five grand mals (his fifth one this morning) and at least nine partial complex seizures so far, for a total of fourteen in just seventeen days—nearly twice the number he had in all but one month since June—and we still have two weeks to go till the end of the month.

As I write this, my brain is in analyze mode, trying to figure out what the hell to do with Calvin's Palmetto Harmony CBD cannabis oil dose. I think my mind and my gut are telling me to increase the dose (since decreasing it seemed to yield more seizures, and since I decreased his THCA several weeks ago, and since he has gained a little bit of weight, enough to outgrow his Keppra dose which I don't want to increase, and since it seems with the administration of more CBD his seizure clusters usually stop.

What's so difficult is that the range of CBD dosing is so vast—anywhere from a dozen or so up to several-hundred milligrams per day of whole-plant oils, to as many as six- to thirteen-hundred milligrams for kids taking Epidiolex, the non-synthetic pharmaceutical version. But I must remember that Calvin has always seemed to need higher doses than most kids his age and size for any drug to be somewhat effective.

And as I sit here looking out over my garden I'm reminded that, if not for my little monster Calvin—even though he makes everything under the sun uber difficult—I may not have begun writing at all.

10.13.2018

on forgiving

I was awakened six times by my restless child until the grand mal finally took hold. From three-thirty on I got no sleep at all, next to me my boy waking every several minutes pressing his eyes, his heart pounding. It seems the Palmetto Harmony CBD oil I gave him after the fit may have thwarted subsequent ones. If nothing else, at least the cannabis appears forgiving, its side effects mild if not often positive compared with other antiepileptic drugs known for their mind-numbing, body-clobbering impact.

Resting next to him, I mused on the word, forgive, and its derivatives. To ask for forgiveness requires courage and humility in admitting our transgressions. To be forgiving is to offer understanding, while allowing space for mistakes made, and perhaps recognizing and admitting our own. Forgiveness might just save us from ourselves and others, assuming it is asked sincerely and given with grace and mercy, rather than with spite and reproach.

Calvin is no doubt the most forgiving soul I know. I take lessons from him, try to emulate the stamina of his kindness, his unconditional forgiveness in the face of my anger and frustration. Unconditionally, he forgives my every flaw with or without my asking. He is inspirational. My muse. My hero. He allows me to forgive even myself.

Photo by Michael Kolster

10.09.2018

others' shoes

Hard as I try, I can never get inside my disabled, non-verbal son's head. I long to know what Calvin is thinking. I often wonder how he feels. Does he dream, does he remember, does he dread? Though I can never know the answers to these questions, in my quest to understand and to empathize with him—and to suppress my inclination toward anger and frustration at his protests—the best thing I can do is to put myself in Calvin's shoes.

Long before Calvin, I thirsted to know the experiences of others unlike myself—People of Color, the homeless, people from foreign lands. So, after graduating college I set off to explore the world—Great Britain, Europe, Turkey, former Yugoslavia, Kenya, Tanzania, Egypt—in search of other, and to find my best self. I saw firsthand how others lived—in urban apartments, in mud and grass huts, in slate-roofed brick inns, in bungalows. Everywhere I went people were the same—kind, generous, loving, trusting—and yet different in the ways they cooked, the foods they ate, how they worshiped, the way they labored. When I returned home I began to explore what life was like for my fellow Americans.

Yesterday—Columbus Day to some—was what many of us have reframed as Native or Indigenous People's Day. It's a day to honor the millions of Native Americans and their descendants whom Columbus and those like him did their best to exterminate and homogenize, the same people who continue to be marginalized today. Last Saturday night, Michael and I discussed the holiday with a group of friends. We spoke of the horrors that Native people faced when White imperialists invaded the Americas—genocide, disease, pillaging, slavery, kidnapping, rape. We spoke of the terror indigenous parents faced when their children were snatched from them and given to White Christian couples to raise. We cringed hearing that Natives who dared to speak their own languages risked having their tongues snipped by Whites. For hundreds of years, a similar horror befell African men, women and children who were forcibly brought here during the Atlantic slave trade and—if they survived the brutal months-long journey—were denied their religion, their language, their customs, their dress, their freedom, their families, their lives. As we spoke of these atrocities, I imagined walking in their shoes.

The subjugation of Brown and Black people continues today with policies that restrict their mobility and limit their access to housing, proper education, healthcare, employment, clean water, safe streets, the right to vote, and exposes them to criminal justice biases and laws that put them behind bars at alarming rates compared with Whites. What's more is that many if not most Whites deny this racist paradigm, willfully submitting themselves to—and emboldened by—the false propaganda of racist fearmongers like the current part-time, temporary resident of 1600 Pennsylvania Avenue and of his attorney general.

The other day I heard my state's US Senator Susan Collins—in a forty-five minute speech defending her support of a Justice Kavanaugh—say that she imagined walking in his shoes. While some of my best friends are White men, the shoes Senator Collins and other legislators should be imagining themselves walking in are the shoes of sexual assault victims and the shoes of the vulnerable and disenfranchised, whose numbers dwarf those of self-proclaimed wrongfully-accused White men. With few exceptions, White men are not the fragile of us in this nation; they are fortified, buttressed by centuries of laws upholding their rights before all others to own property, go to college, get credit, run for office and vote. They are not the oppressed; in government—on the Right—they are the oppressors. They are not the abused or terrorized; statistically, they are the abusers, the terrorists. And while I agree that many White men work their asses off to get ahead, because of the White male paradigm in this nation they have had a major advantage and—due to neglect or intent—have impeded others' progress far too long. The rest of us continue to struggle—to be paid an equal wage for the same work, to be free from racial profiling, to feel free to peacefully protest our oppression, to be sentenced fairly when we do wrong, to feel safe having a drink at a bar or party, to feel safe to camp and hike and walk alone at night, to feel safe calling the cops, to feel secure in our own cars, neighborhoods and homes, to feel safe to identify our assaulters. These are all freedoms virtually guaranteed to White men while being denied, through policy and/or practice, to the rest of us.

Furthermore, we who value freedom, justice and truth should rebuke so-called leaders who blame sexual assault victims calling them hoaxes, who champion legislation that limits freedoms of marginalized people, who disparage and malign women and People of Color, who characterize White supremacists and Neo-NAZIs as "good people," who align themselves with vicious dictators, who call African nations "shitholes," who pitch us against each other for selfish gains, who lie often and with impunity, who incessantly praise themselves, casting aspersions on others while never holding themselves accountable for a goddamn thing—and who openly and unabashedly mock people like my sweet boy Calvin.

We should recognize, own and credit—not feel guilty for or ashamed of—our privileges as White folks in this amazing land stolen from its natives and built on the backs of slaves. We should believe our fellow Americans when they say they are being oppressed. We should champion causes for the marginalized and most vulnerable of us. We cannot hope to better ourselves and our nation until we understand and empathize with the plight of others. The first step is to decide to walk in their shoes.

oh, and for paradigm shift, please go to vote.org

Photo by Floriana-Barbu

10.06.2018

fifty-five

Today I'm celebrating my fifty-fifth spin around the sun. Tomorrow I celebrate eight years of writing a blog that I never imagined could garner over a million hits while helping parents of kids with epilepsy wean from their benzodiazepines, navigate the world of medicinal cannabis oils, and understand that they are not alone.

In honor of the milestone, for which I'm most grateful—grateful to my parents for having "mistakenly" made me, grateful for being alive, grateful for being healthy beyond a few achy joints, grateful for, and humbled by, the many privileges I enjoy due to the accident of birth—I squeezed into a favorite t-shirt I haven't worn in years, one that has the number 55 emblazoned on its front.

My mother used to tell me that we never really reach maturity, rather we continue to mature as long as we are alive. As a youngster, I thought that sounded pretty wise and thoughtful, and I fully embraced the notion. Since then I've continued to enjoy getting older. I figure with age comes experience and with experience comes wisdom. At least I hope I'm getting wiser; Oscar Wilde said age can sometimes come alone—yesterday's regrettable senate vote on supreme court nominee Bart (or is it Boof?) O'Kavanaugh was a validation of said premise.

Over time, I've come to consider birthdays as opportunities to explore how I can improve myself and find new ways to contribute to the betterment of the world. This year, I'd like to get back into jogging with the hope of lowering my stress level and strengthening my body, and perhaps fit into my jeans and tops with a little more wiggle room. I also want to use my agency to change the stale political paradigm, want to smash the conservative white-male patriarchy into bits, want to support new faces and voices, and promote progressive ways of managing an ever-changing world. Conservatism and originalism be damned. Nothing is fixed. The only constant is change.

So, as I celebrate another passing year, I hope to remain open and brave, not fearful and closed. I hope to see each day with new eyes ready to explore the beautiful and awful unknown. I hope to embrace humility while remaining fierce in my fight against bigotry, and sturdy in my struggle for justice. Most of all, I hope to keep growing older for a long while, and I aim with my everything to evolve.

10.05.2018

nursemaid

I remember being eager to meet my child for the first time. Rubbing coconut oil on my pregnant belly after a swim, I wondered what he'd be like (I was pretty sure I was going to birth a boy). Would he have blond hair like I did as a toddler? What color would his eyes be? Might he grow up to be tall and thin like his dad and my father? Might he become a world traveler? A teacher? An artist? A writer or musician? I dreamt about all kinds of things we'd do together, mother and son.

I had often wondered what I'd do if I were to have a disabled child. But, like any of us, I never truly believed it would happen to me. After all, I was so very healthy, especially after I quit my toxic job.

And then, two weeks before Calvin was born, doctors told us that something was terribly wrong—the lateral ventricles in our baby's brain were enlarged, possibly due to bleeds in his brain.

Yesterday, I held my tiny fourteen-year-old child in my arms as he seized on and off all day long. He had had two grand mals the night before, and he woke to another grand mal this morning. He's had more seizures in the last two-and-a-half days than he did in the entire month of September. I don't know what is going on.

Am I giving him too much CBD, or does he need more? Is he going through a growth spurt? I swear he is taller than just a few weeks ago. Are puberty's hormones causing this bad streak? Is he sick again? Is he experiencing a latent spate of benzodiazepine withdrawal?

I ask myself these questions often. Yesterday, while coaxing Calvin to drink even the slightest bit of water, I realized no one would do what I do for Calvin, not even in a hospital or nursing home. In some ways I feel more like his nursemaid than his mother—safely lifting him from his bed to his changing table and back again, taking his rectal temperature, monitoring his bowel movements, giving him daily suppositories, sometimes having to digitally remove his stool, syringing water in his mouth when he won't drink, giving him rescue meds when waves of seizures come, researching new medicines and treatments for epilepsy, constipation etc., making THCA cannabis oil, trying to collect urine for laboratory testing by placing cotton balls in his diaper, waking up scores of times nightly to check on him, lie him back down and cover him, tend to him if he is seizing.

After the third grand mal in as many days, plus the unknown number of partial complex seizures in-between, Michael and I decided to give Calvin Diastat—rectal Valium—to stop the cluster. So far it has worked. What I do next, I am not certain. I'm not a doctor, and neurologists rarely, if ever, have the answers. So I'll have to consult with other parents on social media, and I'll have to trust my motherly gut, and employ my nursemaid power.

10.03.2018

too good to be true

"Godammit!" I cried, whipping the covers off and scrambling to our seizing child. It was the first of two grand mals Calvin suffered on either side of midnight last night.

I had been expecting a seizure for a couple of days, having seen many harbingers on Sunday, and more on Monday—my child's warm skin, his hyperactivity, mania, rashy butt, insane fingering, agitation, eye poking, jaw jutting, bumpy face. But yesterday after school Calvin was a dream. He walked well and waited patiently at the grocery store, ate a good dinner, sat happily in my lap giggling as I tickled him, played with his toys for a bit, went to sleep fairly easily with a huge smile on his face.

Calvin's good behavior was an inadvertent gift for Michael's birthday, a day my husband has never liked much. He prefers, in most ways, for his birthday to be a day like any other—no pomp, no fuss, no gifts, no attention. Instead, he made one of his favorite meals—stovetop spareribs braised in onions, white wine and serrano pepper aside creamy mashed potatoes and impossibly thin asparagus. After we ate, I brought out the mint chocolate Oreo ice cream cake I had made while Calvin was at school. Although we are both tired and overextended, it was turning out to be one of his better birthdays.

Regrettably, however, epilepsy has a way of ruining things—sleep, meals, celebrations, plans, hopes, dreams. Considering Calvin's good nature yesterday, the first seizure was somewhat of a shock; the second one, though half-expected because of the earliness of the first, a complete letdown. I told Michael that I had had a fleeting thought earlier that Calvin's good day might be too good to be true. I was right.

The three of us have been mostly awake since 1:30 this morning dealing with a wired child who doesn't appear to be out of the woods. After the second seizure, and for reasons I can never be sure of, Calvin spent several restless hours alternating between lying down and hugging me and sitting up with a rapid and pounding heart, clammy hands, trembling feet, and arms so crooked and fingers working so madly against each other you'd think he could spark a flame. Now he is in the jumper stomping, eye poking, fingering, clenching his teeth, and covering his ears, foamy drool bubbling down his chin.

Days like these nearly break me into little pieces. But there are things that save me from completely falling apart—writing, trying to focus on the knowledge that this too will end, gazing outside at the trees and shrubs turning orange, rose and yellow in the autumn sun, and listening to music hoping my son isn't winding up into another one. And gratitude. Gratitude for other things nearly too good to be true—a warm house, a fine, handsome, creative, talented, thoughtful, smart, prolific and loving husband, wine on the table, food in our bellies, electricity, hot water, indoor plumbing, art on the walls, dry basements, light-filled spaces, cozy fires, dear friends and family, enough clothes, enough money, decent health care and schools, reliable cars, leftover ribs, and mint chocolate Oreo ice cream cake in the freezer.

10.01.2018

changes

The kid we have now is the kid we will likely have in years to come. With few exceptions, Calvin is the child he was five, ten, twelve years ago. He still wears diapers, still can't talk, still whines and coos, still spins in his jumper, still crawls on the ground, bangs shutters, bites rugs and stares at the sun.

He still takes medicine and endures scores of seizures every year.

This weekend, however, marked another personal best: Calvin walked with me and Nellie nearly a mile—down and back from Lauren's house—with a brief break to sit and drink some fresh, unfiltered apple juice with Lauren. Calvin has walked to Lauren's only twice before, though he has never walked back. Having said that, Calvin still pulled his usual antics of trying to drop down every few yards once we got about halfway to her house. I'm ashamed to say that my friend Stephanie, having seen me struggle outside her house came out and helped me with Nellie, had to witness me cursing my exasperating situation. Thankfully, like a rental horse returning to its stall, Calvin exhibited little stubbornness on the walk back home.

Sunday was a repeat performance; Michael and I took Calvin and Nellie to Portland where we strolled several cobbled blocks with a compliant child. It was the first time we've visited Portland without having brought Calvin's stroller along.

In pondering these recent milestones, it seems that with each passing month since his last dose of benzodiazepine Calvin's stamina improves. Perhaps, too, taking less Keppra, by virtue of his weight gain, probably helps him too. Additionally, the reduction of his THCA cannabis oil seems to be helping him have less agitated afternoons. Moreover, the addition of Palmetto Harmony CBD oil, unlike other CBD oils he has tried, appears to be reducing his seizures overall; since starting it in late June, Calvin's monthly grand mals have gone from six to eight down to four or less. If Calvin continues on this positive trajectory, he'll have fewer seizures this year than in any year since 2014 when he was taking way more medication!

So, though the kid in the video below, which was taken just before his eighth birthday (he is now fourteen), is heartbreakingly much the same as the one we know and love today, I am deeply grateful he is doing better in terms of behaviors, stamina, understanding, sleep and seizures. And though my kid isn't riding bikes, competing in sports, writing essays, planning for college—on the contrary can barely push a doorbell—I embrace and consider his tiny milestones as significant and positive changes.