5.14.2019

hell is an ambulatory eeg

i really don't feel like going into it. suffice to say, this happened today and is still happening. #ineedfourmorehands #fuckthisshit #webetterlearnsomething #colossalpainintheass #impossiblekid #tomorrowcannotcomesoonenough

5.13.2019

gratitude and sorrow

At Niles' request, I had brought Calvin downstairs Saturday to greet Michael's documentary photography students who had gathered here for dinner—something Michael has been doing for eighteen years at the close of every college semester. Poor Calvin, having had a good day despite some seizure harbingers (sour breath, warm hands, rashy butt) had spiraled into his "ooh-oohing," seemingly oblivious to anything but his fingers mad-snapping mere inches from his face. The students watched our son in relative silence, seemingly not knowing how to respond to an uber-awkward child so remote and unresponsive.

Just before they arrived, I'd been upstairs changing that hour's third, foul, poopy diaper which Calvin had gotten his hands into and within minutes proceeded to spread shit onto his pants, sheet and the toys that he mouths. Multiple wipes and four applications of hand sanitizer did not remove the reek from his fingertips. Thankfully, shortly after Calvin met the students, he went to sleep without too much trouble, and I was able to join the crew.

The young men and women, students of all races and backgrounds, sat around the coffee table gabbing and eating pizza before doing a Yankee swap with their photos. I stood from the dining room, sipping wine, looking on, making jokes and commenting on their photos. I talked too briefly with Octavio, whose brother Daniel, a Fulbright scholar, had also been a student of Michael's. I spoke with Brennan about a photo book he is publishing, and we talked about his love—and my curiosity—of Russian literature. At the end of the evening one of the students—I think it was Nate—asked how Michael and I had first met. I blushed telling them that when I was unemployed, before I began my design career at Levi Strauss in San Francisco, I'd been one of his photography students in a community college adult education class when we were both thirty-four. They laughed when I told them that Michael gave me an A- in my intro class, prompting me to take a second class to get the A. It was at the very end of that second semester when he and I began hanging out.

As students of an advanced class, I'd met all of them previously when they had come over as beginning photography students. After the photo swap and some brownies and ice cream, the group lingered a while before all but five of them left. For the next couple of hours, I sat amongst the beloved stragglers—J.P., Niles, Cirque, Nate and Brennan—as we discussed religion, photography, English as a major, parents, Rumspringa, and college professors. Even at ten o'clock I was still alert, energized by the lively conversation and feeling comfortable—like I did as a child with four brothers—amongst a bunch of guys.

It was impossible for me to sit there on the floor of our living room and not wish that any of the boys—young men, really—were my son, all of them witty, talented, kind, college undergrads, the kind I once dreamt a son of mine might be.

Eventually, sleep deprivation got its grip on me and I had to say goodnight. I hugged them all, hoping I'd see them again sometime. I went to sleep feeling gratitude and sorrow—gratitude for our ability to know, laugh and engage with these bright, curious, open individuals, and sorrow because we'll never experience any of that with our own boy.

Then, at three-thirty on Mother's Day morning, my sweet, vulnerable child did what I thought he might do: he seized in his bed for ninety seconds. I dabbed lavender on his pillow, then crawled in next to him and held him like the baby he once was, and still is.

Me and Octavio

5.09.2019

love hurts

In the sunlight, Calvin's hair is the color of redwood in rain. His skin is creamy and supple. A little crescent-shaped dimple appears at the corner of his mouth when he smiles and giggles. Gracing his cheeks, neck and arms is a sparse constellation of little dark specks, a half-dozen of them tossed as if seeds in a breeze. A larger freckle, the first of them to appear when he was little, adorns his left shoulder blade.

Our son is pure and sweet and vulnerable. His body, though awkwardly gangly, remains flawless. But his brain is messed-up, missing a significant amount of its white matter, so much that at fifteen he can't tell us of his miseries which, because of epilepsy and its treatments, are plenty. These are all reasons why it pains me so much when he gets hurt.

The other day Calvin fell while in the bathtub. From downstairs I heard the colossal splash, as if someone were doing a cannonball into a pool. In the past, I'd seen him kneel at the edge of the tub and try to stand, so I knew what had likely happened, but how? The nurse on duty had left the bathroom, however briefly I don't know—something I had allowed the nurses to quickly do to put his dirty clothing in his room down the hall and to grab his towel. While she was gone, Calvin must have tried to get out of the tub and then fell in the absence of someone there to help. By the time I got to the top of the stairs where the bathroom is, he began whimpering; that moment of silence between hurt and tears is so dreadfully gut-wrenching. The nurse and I had no idea what part of his body had been injured. The circular purplish bruises on his bony upper and lower hip did not show themselves to me until the next day's bath, when Calvin removed the rubber stopper and put the whole thing into his mouth.

As I write this I am keenly aware of the frown on my face—my furrowed brow, narrowed eyes and protruding bottom lip. I'm wincing with palpable heartache at my son's fragility and pain even now, days after the accident. I want to be there always to protect him. To break his fall. To prevent him from choking. To stop his seizureish fits. And though it's not humanly possible, I'll try with supermama vigilance nonetheless.

5.08.2019

know what you don't know (SUDEP)

SUDEP (Sudden Unexpected Death in Epilepsy) happens to someone every seven to nine seconds. It is the second leading cause of lost years of life behind stroke. One in twenty-six of us—our kids, our parents, our partners, our siblings, ourselves—will be diagnosed with epilepsy at some point in our lifetime. One third of those diagnosed will not have their seizures controlled using medication. Know what you don't know about SUDEP.

This Ted Talk, in my opinion, is poorly titled, because it is as much about artificial intelligence as it is about epilepsy and SUDEP. Please take twenty minutes to watch, and share.


             

5.04.2019

treading water

From the age of seven until twenty-two, I was a competitive swimmer. At fifteen I was the lead on my high school's 400 freestyle relay team at the 1979 Washington State swimming championships. We won the event and became All-Americans. In college, I swam a mile under twenty minutes, the 50-yard freestyle in 24 seconds and the 100-yard freestyle in 54 seconds. I placed second at NAIA regionals in the 400 individual medley having never swum it before. At least once in my life I swam nine miles in one day. On most other days I swam four or more miles, and lifted weights. I bench pressed 135 pounds. And while there were periods in my swimming career when I might have been considered decently fast, by no means was I elite, though I swam with and against a couple of Olympians.

All of my time in the pool made treading water effortless for me. I could tread holding both hands above my head for minutes at a time without tiring, and could sculpt the water with my hands well enough to keep afloat without using my legs.

Last night, after our son Calvin suffered a second grand mal seizure in just over two days, it occurred to me that living with the nightmare of epilepsy feels like treading water in quicksand. Relentless seizures make it difficult to keep my head above water—to get enough sleep, to hold anxiety at bay, to catch a breather once in a while, to keep my child safe, to avoid sinking in a sea of despair.

Before Calvin, a life immersed in competitive swimming presented some of my most difficult challenges. The pain was relentless. Dreaded and grueling workouts began at ungodly hours. Rest between sets was fleeting. The torture lasted for weeks, months, years. Competition proved to be nerve-racking. Defeats were dispiriting. Much of the time the suffering outweighed the joy. At times, triumphs were few and far between, leading me to wonder if it was worth all of the suffering. 

In a strange way, swimming has steeled me for this marathon of caring for my non-verbal, legally blind, incontinent, physically and intellectually impaired, chronically ill teenager. All those years in the pool taught me the meaning and value of commitment and hard work, made me strong, tenacious and resilient, and enabled me to discover just how capable—physically and emotionally—I am both in calm, clear waters and in raging seas.

Photo by Lisa Kolster

5.02.2019

counting april

only one grand mal. ten partial (focal) seizures. seven days of fits. one new thca oil using two ounces of a new cannabis strain called mandarin cookies. zero thc? countless early risings. a dozen or more eight o'clock bedtimes. more gray days than sunny ones. several inches of rainfall. weeks on end of feeling like it's november. lots of smiles from calvin. one growing, sixty-seven pound, fifty-four inch teenager (first percentile). two kick-ass nurses and one kick-ass mary helping me. another eeg scheduled, first one in i don't know how long. one additional daily thca dose, mornings. lots of fingers crossed. much hope of reducing keppra. seven days since the last grand mal. two weeks until i visit the big apple. five rhododendron buds open. countless others swelling. one semi-seeded lawn. three birdbaths quenching birds and squirrels. one sheared goldendoodle. too many bats roosting in the eaves. one loving husband cooking infinite delicious meals. one new friend. this tired mama.

4.28.2019

fourth morning

On four consecutive mornings, Calvin woke to a seizure between three-thirty and four o'clock. The first, last Thursday, was a grand mal; all the others were partial (focal) seizures. If it weren't for the fact that the first two seizures happened before I started giving him my latest batch of THCA oil— using an entirely new strain of cannabis than I have used for over five years—I would have blamed the oil. But I can't blame the oil, at least not yet. I can, however, blame the epilepsy, which is effed-up shit, a moving target, a heinous disorder, usually a life sentence for patients and their families.

Still, I can be grateful—my THCA oil tested very close to the concentration I had targeted, despite the fact that I did not know for certain the amount of THCA in the new batch of Mandarin Cookies flower I used, nor did I know the amount of THCA in the resin I extracted from it. I can thank my pal Janel from Palmetto Harmony for walking me through the math used to calculate, predict and plan the correct concentration. I can also be grateful that Calvin has been extremely calm these past few days, smiling, compliant, affectionate and super easy to take care of. Maybe it's the Mandarin Cookies at work!

Photo by Michael Kolster

4.25.2019

blessings

It was bound to happen, and it did so at three a.m. His scream was muffled, thus barely arousing me. Half asleep, Michael and I caressed Calvin as he seized, then I crawled in with our boy and held him, where I could hear and feel his pounding heartbeat. Our heads rested together on a soft cotton pillowcase that belonged to our dear friend who took his own life last summer, and whose birthday it is today. Somehow, it felt safe and right putting cheek to fabric that in sleep used to touch his well-missed face.

During Calvin's last spate of seizures, I grieved. In my mourning, I told someone that when I see Calvin suffer miseries such as seizures and night terrors, I am more accepting than usual of the real chance he might not live out his childhood years; no one wants to see their child suffer repeatedly. She said his death would be a blessing. She used that word. Others have, too. Rather than admonish her, I simply disagreed. And though her words stung, and though they were ignorant, I knew what she was trying to say and I knew they came from a place of love.

Yesterday, I wrote to an acquaintance who lost his grown son a few years ago:

your loss of your son resonates with me on some level. i think of that poem, "Vigil Strange I Kept on the Field One Night," by walt whitman, which i post on my blog most memorial days. in it, he speaks so tenderly of his "boy of responding kisses." with our sons, i believe we both have experienced losses of our own kind. and though we feel grief over those losses, maybe we have gone on to have relationships with them in unexpected, deep and meaningful ways—yours perhaps developing even after his death, and mine with a non-verbal, severely disabled one who i can never truly know or understand. of course, nothing can replace who or what they might have gone on to be, but somehow, despite that, perhaps we still have profound connections with them.

Still, I can say unequivocally that the loss of a child is no blessing.

A blessing is a seizure-free child. A blessing would be a planet without hunger, poverty, bigotry or disease. A blessing would be a world where men don't rape and abuse girls and women—at home, behind dumpsters on college campuses, as a tactic of war. A blessing would be a world where spirituality, brotherhood, love, acceptance and connectedness replaces religious dogma, its fears, its wars, its patriarchies, its contempt and conceit, its divisions of all the world's people. Blessings are in birdsongs and stars. A blessing is a cleansing rain. A blessing is a break in the clouds. A blessing is a good night's sleep, a healthy child, a loving husband. A blessing would be a hate-free world. A blessing is an old friend connecting again, enough food on the table, a soft pillowcase, a warm bed. A blessing is a breeze coming off open ocean. A blessing is freedom, justice, peace, equality of people, a place without greed, deceit and exploitation. Blessings are cherished memories of loved ones who've passed away. A blessing is a son who can verbalize what is hurting him. A blessing is a child who can run and play.

A blessing is kissing and holding your child closely, as if it were their first or last day.


4.24.2019

sometimes less is more

At the neurologist yesterday, I was very happy to report that Calvin hadn't had a grand mal seizure in twenty-four days—roughly four to five times longer than this year's average span—and that in the past thirty days he has suffered only three days of seizures (compared with a half dozen to a dozen or more in a month's time.)

Calvin's neurologist, a pediatric epileptologist, wondered to what I attributed the abrupt and substantial decrease of seizures in the wake of last month which was peppered with them. I told him I believed it was the recent reduction of Calvin's CBD (cannabidiol) cannabis oil. In mid March, after having experimentally increased it by thirty percent (to 145 mgs/day), then having seen a rash of seizures at the higher dose, we cut it by about two-thirds (to 60 mgs/day) and saw immediate results.

I saw the doc jot something down in his notes.

I spent most of the appointment asking him about other drugs and non-traditional options in case we ever want to try another pharmaceutical besides Keppra. I asked him about Tegritol, Trileptal, Briviact, vigabatrin, Vimpat, cuprum metallicum, magnesium, B12 and Epidiolex. Some of the drugs are primarily prescribed for focal seizures. One of them risks visual disturbances, including blindness. The doc had not seen any compelling medical literature on the alternative therapies I asked about, and confessed to being the kind of physician who relies heavily on traditional Western approaches, (namely drugs). At that point, I remembered how six years ago Calvin's pediatrician and I lobbied hard to convince him that cannabis oil, both THCA and CBD, appear to have decent track records for treating the most stubborn childhood epilepsies. Having finally convinced the neurologist that cannabis was reasonable to try, Calvin became the first patient in the entire Maine Neurology practice to get a recommendation to use cannabis to treat epilepsy. Several months after starting Calvin on a homemade THCA oil, his daytime grand mal seizures virtually disappeared.

When it came to discussing Epidiolex (the plant-based pharmaceutical version of CBD) the doc said he had about ten patients taking it. I asked if he was on the Facebook Epidiolex Discussion Group page. Not surprisingly, he said, no. I told him that I am, and that I'd seen a trend in comments from parents of children having success with Epidiolex at sub-therapeutic doses, i.e. starting and/or remaining far below the suggested starting dose of 5 mgs/kg, and that at high doses, in some people, it appears to make seizures worse. This is consistent with what I have read about whole-plant CBD oil, and what I have seen in Calvin. In other words, sometimes less is more. 

Again, I saw the doc jot something down in his notes.

We left the neurologist's office with a plan for Calvin to undergo a 24-hour ambulatory EEG at home to compare his brain activity to previous EEGs, which were done many years ago. In the meantime, I'm waiting for lab results on my latest batch of THCA oil which I was forced to make with a new strain of cannabis called Mandarin Cookies. I'll be starting Calvin on it sometime this weekend, hoping the transition will be seamless, if not more beneficial. If all goes well, at some point in the near future, as I told the neurologist, we hope to reduce Calvin's high dose of Keppra to see if his behavior—his mood swings, manic laughter, hyperkinesia—improves. Perhaps, at least in Calvin's case, less is more with pharmaceuticals, too.


4.20.2019

twilight mist

i stand outside in twilight mist. the grass is beginning to green and the earth is softening underfoot, save for a patch of ice in a slice of shade. buds are starting to plump. shoots are pushing up through the mulch.

inside, michael is making dinner and dessert for our guests. i can see him through the window in amber light, the baby monitor slung around his head. i can almost hear the stereo playing cibo matto's alternative japanese funk. soon, i'll feel the bass beat in my chest like an artificial heart.

upstairs, calvin is in bed having suffered four complex partial seizures today. he's not asleep. i'm standing under white pines and oaks; my son is likely not out of the woods.

when i come inside i smell the lemon blueberry almond-flour cake cooling on a wire rack. i drink a sip of french wine. it soothes my throat. i feel an itch to write. i have time. our guests are running late.

tonight, we'll light the candles. i'll head upstairs umpteen times to check on our kid. i won't catch up on last night's lost sleep. still, i'll go to bed grateful for my handsome husband, food on the table, music in my ears, a feast of good conversation with wicked smart and loving people, a warm house, a good dog and the sweetest boy in the world.

Photo by Michael Kolster (from a few years ago)

4.19.2019

college nostalgia, sweet spots, pity eclipses, etc.

For a couple of hours last evening I was taken back to my college days, to a sweet, off-campus house shared by five students, complete with a shabby, yellow, vintage sofa and rooms decked out with second-hand tables and chairs. Our host let me peruse the second floor where, at the top of a steep, carpeted, slightly askew staircase, I peered into the dimness of a few rooms, their beds and floors endearingly strewn with piles of clothes like so many college students are wont to do.

Back in the kitchen, I cracked open a bottle of Côtes du Rhône and filled four stemless wine glasses, two of them plastic. We toasted our hosts, Ben and Meghan, wishing them well in the final few weeks of their senior year. We got their takes on life in Michael's photography classes, plus updates on their current projects. They told us of their post-graduation plans and dreams, including moving to Boston, of having turned down lucrative job offers that didn't speak to their hearts, and of their desire to live near new and old friends. They explained the dating app they've been designing, how it works, and shared with us its clever name, logo and marketing campaign.

It felt good to be sitting around a table with such bright, curious and engaged youth, felt good to be in an apartment that looked, smelled and vibrated so much like the ones I shared with my college roommates thirty-five years ago. And though I was delighted to be in the company of these generous souls who perfectly seared a huge filet mignon and tossed a tasty organic green bean and tomato salad, I was keenly aware of the pinch and sting I felt knowing I'd never be doing such things with my own child. Thankfully, however, the joy of communing with these happy, energetic, optimistic individuals eclipsed any pity I might've felt for myself. I left hoping they'd keep in touch and visit us from time to time like a few other beloved former students—Arnd, Ivano, Emma—did and have done over the years.

Back at home with our fifteen-year-old son who can't speak, wears diapers, still drinks from a sippy-cup, plays with chew toys, and is prone to seize, we are celebrating his own triumphs: Calvin has suffered only one seizure this month, and it was not a grand mal. He has had only three grand mals in the past thirty days, plus just three complex partial ones. And though I shouldn't get ahead of myself, if April keeps trending this well, it could be his best month seizure-wise in four or five years, despite taking only one pharmaceutical. I'm owing this success to having significantly reduced his Palmetto Harmony CBD oil from about five milligrams per kilogram of his weight down to about two mgs/kg, a strategy for success (finding its sweet spot) that its maker and many other parents attest to.

And so today, in the happy afterglow of last night's gathering, and during a day in which my own boy is doing quite well, I'm hoping good things for the Bowdoin College seniors who are about to inherit—and no doubt change for the better and for the common good—our crazy, effed-up world.


4.15.2019

so far so good

He looked like hell when I got him off of the bus last Thursday. Calvin's cheeks were purplish and blotchy, and he was trembling. Earlier, the school nurse had called saying he had strangely mottled thighs, something I've sometimes noticed on days before seizures. Once inside the house, I looked over the daily summary sheet that was sent home with him. It indicated that he'd also been whiny and shivering, though the nurse hadn't taken his temperature. I wish I had known. When I changed his diaper I noted his mottled skin, which was as purplish and as conspicuous as I'd ever seen, the marbled pattern spreading across his torso as well as his thighs. Though he had goosebumps on his legs, he felt warm, so I took his temperature. The thermometer read 102.2 degrees.

Poor Calvin continued to tremble, so I gathered him in my arms and carried him upstairs, where I gave him a tylenol, peeled off a few layers of his clothing and put him to bed. Thankfully, his fever broke later that night.

Unremarkably, all weekend long he spent resting, in and out of bed, in and out of our arms. Quite remarkably, he didn't have any seizures. Typically, viruses lower Calvin's seizure threshold, particularly at the start of an illness, often before symptoms appear.

Remarkable, too, is that since reducing Calvin's Palmetto Harmony CBD oil three weeks ago after a terrible, months-long spate of seizures, Calvin has had only two grand mals and one complex partial seizure. It appears that the CBD reduction—from 145 mgs to 60 mgs—did what many parents have attested to: it seems to have helped reduce his seizures, particularly his complex partial ones, to levels as low as just about any time in the past four years—just eight total seizures in a months' time, four of each. Though it is still a very small time-window to look through, I'd say, so far so good with the CBD strategy.

And though I've been toying with the idea of reducing Calvin's high dose of Keppra to see if his behavior and complex partial seizures improve, or further reducing his CBD oil to see if all of Calvin's seizures decrease when taking a lower dose, I am going to, instead, keep things status quo. I came to this conclusion after considering that, in a few weeks, I am going to have to replace Calvin's homemade THCA oil with one made from an entirely new strain of cannabis, thus introducing a new variable; I try to limit variables to one at a time.

For now, so far so good. Nevertheless, please cross your fingers and knock on wood.

Photo by Michael Kolster

4.09.2019

where to begin?

Where to begin? I guess by first saying that, since I decreased Calvin's Palmetto Harmony CBD oil from 145 milligrams per day down to 60 mgs nearly three weeks ago, (because I thought it might be triggering a particularly bad spate of seizures), he has had just one complex partial and two grand mal seizures. Furthermore, it has been eleven days since his last grand mal which, relatively speaking, is on the longer side of recent things. So, April is shaping up to be a decent month seizure-wise (again, relatively speaking), especially compared to the madness in March.

I use the phrase "relatively speaking" because when I dug out old calendars I was reminded that six years ago Calvin suffered just thirteen grand mal seizures the entire year in comparison to each of the last five years in which he had fifty or more. But I must also remember that in 2013 he was on high doses of three powerful antiepileptic drugs. I must remember that I cried nearly every day having to peel my psychotic child off of the ceiling regularly. My husband and I agreed that no amount of seizure freedom seemed worth that, really. Calvin's and our quality of life was in ruins, and so we began weaning his meds, which had heinous side effects despite rarely giving Calvin more than a few weeks at a time of seizure freedom. Then, in 2014, we began giving him a homemade THCA oil, which virtually eliminated Calvin's daytime grand mal seizures.

Last Thursday, we took Calvin to see Laurel Sheppard, the nurse practitioner in Dr. Dustin Sulak's Maine office. Dr. Sulak specializes in treating various conditions using cannabis; Laurel feilds the epilepsy cases. The appointment, though long overdue, was worthwhile, if only to serve as a validation of the knowledge I've gleaned by doing my own research. Laurel confirmed my understanding that the dosing range for CBD is vast, from as low as 0.5 mgs/kg of weight up to 30 mgs/kg. I learned that the range for THCA is wider than I'd previously thought. She said that many children are doing well taking both CBD and THCA oils, which doesn't surprise me. Others are doing well adding a little bit of THC. She recommended that our next step with Calvin, after seeing how the recent CBD reduction goes, might be to increase my homemade THCA oil, which I had reduced last fall, replacing the morning dose with CBD, and eliminating the late-afternoon dose all together to see if some of his late-afternoon agitation improved.

Laurel's suggestion seemed like a reasonable one, but I was thrown another curveball: the cannabis flower I use to make Calvin's THCA oil, Chemdog—one which I've been getting reliably for the past five-and-a-half years from our local dispensary—isn't available, at least not right now. Moreover, I'm running low on the oil. So, I spent all day yesterday and a good part of both weekend days trying to solve this dilemma. I contacted a bunch of my buddies in the pediatric epilepsy cannabis world. All of them did their best to help. Suffice to say I found no local caregivers who are growing the strain, nor did I find a consistent, concentrated and compatible THCA oil that I could use as a substitute.

Thanks to an amazing, thoughtful, generous woman at the dispensary, named Danielle, I found a solution I think I can live with, and I am actually kind of amazed that I'm not freaking out: I'm going to try using a different strain, one called Mandarin Cookies, to make my oil instead of good ole Chemdog. Mandarin Cookies is an indica-dominant phenotype said to be rich in linalool and mercene—terpenes thought to be helpful in suppressing seizures. Reviewers laud Mandarin Cookies for its potential to relax and uplift. I'm hoping it might be even better at controlling seizures than Chemdog was. If not, I may be able to go back to using Chemdog once the dispensary harvests it again.

Meanwhile, Calvin's seizure activity has calmed down these past two-and-a-half weeks, but his behavior has seemed to go downhill. He's been more agitated, loud, more restless, and seemingly more headachy. Calvin's behavior has caused me to rethink his Keppra dose, which was already very high before I increased it early last month to account for his recent weight gain and a bad spate of seizures. I fear I may have acted too hastily in increasing it.

So, I sat down at my computer to reacquaint myself with the drug. I was reminded that Keppra's therapeutic range for kids Calvin's age is between 40 and 60 mgs/kg; Calvin is taking 75 mgs/kg. I read that Keppra does not appear to yield much benefit over a certain dose. I am often reminded that most drug side effects are dose related, and that any antiepileptic drug, especially at high doses—including cannabis—can also trigger seizures in some people.

As I sit and listen to Calvin cough and shriek, watch him crook his arms and madly rub his fingertips together, see him clench his jaw, poke his eye, rub his forehead, hear him bang his head against his bed's side panel five or six times a night, I realize his behavior has worsened since increasing the Keppra. So I got his neurologist's buy-in (not that I need to) on reducing his dose in the coming weeks. I'd do it now, but I want a slightly larger window to determine if having cut Calvin's CBD yields meaningful and longer-term results, and I have to decide whether to initiate the new Mandarin Cookies THCA oil first.

And so you see why—between reducing Keppra, evaluating CBD and switching THCA strains—I did not know where to begin when starting this. Having laid it all out in words, perhaps I do now.

Making my THCA oil

4.04.2019

alive and loved

It had been years since I dined with the neighbor-mother of a boy whose due date was within a week or so of Calvin's. However, Calvin, now fifteen, came into the world six weeks early, and from then on the trajectory of our sons' lives would forever be diametrically opposed.

Kathy and I sat in a corner table near the bar sipping beet yuzu martinis and wielding chopsticks to munch a shaved-cabbage, pea shoot, crispy-shallot, and roasted-peanut Asian slaw. My friend ordered pan-fried vegetarian dumplings. I got the ones with pork. We caught up a bit on our and our husbands' recent endeavors and shared worries about our children. We laughed and chatted with a friend seated next to us whose daughter, also fifteen, is in the wonderful thralls of what it means to be a teenager, just like my dinner-date's son.

I find myself hungry for stories of other people's kids even though they often trigger a bittersweet sting. My love for kids—their silliness and wit, their quirkiness and crazy antics, their world curiosity, fearlessness and old-soulness—is largely unquenched because mine is nonverbal and incapable of learning and doing so many of the most basic things. My child is just becoming proficient at riding a trike on smooth, indoor floors, while his peers are playing soccer and lacrosse outdoors. My child is still being spoon-fed diced, minced and pureed foods, while his peers can make their own snack foods. My child is relating mostly with adults—teachers, ed techs, nurses, while his peers are hanging out together and are beginning to show interest in having sweethearts. My child is still playing with chew toys, while his peers are likely already beginning to think about college.

Kristi, the woman seated next to us who I don't know very well, told me that she reads every one of my blog posts. She (needlessly) apologized for having not responded to any of them in written form. She wanted me to know how important she thinks my blog is for others. She went on to say that she even shares it with her children, encouraging them to think outside of themselves and into of the lives of others. I was most humbled by, and grateful for, her affectionate show of appreciation for what has become for me such a labor of love.

While Kathy and I drank and dined, a handful of Bowdoin College English professors filed in slowly and were seated at a nearby table. Three of them—Ann, Marilyn and Aaron—who are dear to me and whom I don't see nearly often enough, came over to visit briefly and to give me big hugs. Throughout my years of living in Maine, they've all been a source of strength, love and damn good humor.

When our drinks were empty and our bellies were full, we got the bill and Kathy kindly paid for our meal. Upon leaving, I gave each of my friends one more hug. As we left the cozy indoors, we were greeted by a cool and invigorating April breeze. I remembered what I'd said to Kristi before we were served our meal: March, which was so full of seizures, had been hellish for Calvin and me. But last night, having begun a new spring month, I left the restaurant feeling new and alive, loved and buttressed by so many kind, compassionate, generous, and wicked-smart people, many of whom are still kids at heart. No wonder I like them so much.

Asian slaw

3.31.2019

good riddance

Good riddance to March and its six grand mals, its baker's dozen of complex partial seizures, its night terror-pain episode and its eighteen days of at least one kind of misery for my boy. Good riddance to dirty snow, icy sidewalks, frozen tundra and frequent sub-freezing temperatures.

A little over a week ago on the heels of a terrible spate of seizures, we reduced Calvin's CBD oil having seen no positive results from having increased it almost two weeks prior. We took it from 145 milligrams down to 60 per day—a dose he was on when he had half as many seizures as he did this month. I did not do a total reboot (taking it away for two days then starting back at its lowest effective dose) since Michael was out of town and I didn't want to do anything drastic while he was away. Since I reduced it, however, we have not seen any complex partial seizures, but it is still too soon to come to any conclusions about the lower dose's overall efficacy. Suffice to say we're hopeful, and if Calvin does have fewer complex partial seizures, it would be consistent with what we saw when he was taking a different brand of CBD oil over a year ago, which was that, at least at high doses, it seemed to trigger complex partial seizures.

So—once again—cross your fingers and knock on wood for our sweet little guinea pig, who endures the suffering seizures bring, and the side effects of the methods we use to thwart them. Hopefully one day we can say good riddance to them, too.

3.28.2019

primal scream

Last night at around eleven-thirty I let out a primal scream. I couldn't help myself, having gotten up every half hour or less since nine o'clock—each time within minutes of falling back to sleep—to resettle my son in his bed and cover him back up. My shriek began as a question: What is wrong (with you, Calvin)?! It ended in an animalistic howl so loud I felt it must have woken the neighbors and shaken the house. Thankfully, both Nellie our wackadoodle and my child seemed totally unfazed. I crawled back into bed with a slightly hoarse and irritated throat, and deep feelings of remorse for my behavior.

Chronic sleep deprivation is torture. It can make me impatient and ugly. My son's all-too frequent awakenings (which, by the way, are far fewer since starting him on a newish CBD oil) sometimes lead to insomnia. Despite being exhausted, I can lie awake for hours worrying about silly things like unfinished chores and calls that need to be made. Often, I fret over the miserable state of things—my son's medicines and seizures, our earth's man-made ills, this administration's vile and pathetic behavior, the ongoing and oppressive patriarchy, the greed of oligarchs, the contempt for the poor, the apparent surge of racism, misogyny and bigotry in the world. Eventually, I get my mind to calm down by imagining forests and oceans, and by counting backwards from one hundred.

This morning, while hugging Calvin in my lap, I apologized to him. I'm fairly certain he doesn't know the meaning of forgiveness, and yet I've no doubt he is forgiving. I recognize my various stresses and limitations in taking care of my infant-toddler-teen these past fifteen years, especially during Michael's absences, and so I try to forgive myself. Thankfully, my husband is coming home tonight after a two-week stint in Europe having taken photographs for a future book of Paris parks, and been on press for his second publication, LA River.

While on a walk with Nellie this morning, I recounted last night's primal scream, and last year's documentary, RBG, which I had watched before I'd gone to bed. In it, badass Chief Justice Ruth Bader Ginsberg quotes Sarah Grimke (1792 - 1893) the American abolitionist, writer, attorney, judge and suffragette:

I ask no favors for my sex. All I ask of our brethren is, that they will take their feet from off our necks.

Recounting the quote made me wonder if my primal scream was more than mere sleep deprivation exacerbated by personal frustration over my son, but rather somehow collective. I imagined other mothers, wives, sisters and daughters shouting various objections about their burdens, their neglect, their abuse, their oppression. Perhaps, as Mary Oliver says in her exquisite poem, Wild Geese, they are out there wildly announcing their "place in the family of things." I don't know the answer, but I feel it when I talk with my beloved soul sisters.

Tonight, I'll be celebrating Michael's return. Tomorrow, he'll be back to cooking us fabulous dinners. As soon as the snow melts we'll be back to grilling outdoors and Calvin will again get to traipse circles around the yard touching his favorite mugo pine, rhododendrons and Alberta spruce. When the ground thaws, I'll be back to digging in the garden. With twilight coming later and later, I'll be staying up a bit longer, but I'll try to catch up on sleep when I can. I'll likely continue having meltdowns every now and then, but my husband, dog and child will, as always, listen without judgment, offer me love, support and forgiveness, and perhaps even understand my need to let out personal and collective primal screams into the world.

St. Cloud, Paris by Michael Kolster

3.25.2019

nature nurture

After three weeks of seeing my son endure all but a handful of days with seizures, I stepped into nature. I find being alone in the forest, seeing and smelling the sea helps soften the edges of any angst I feel. Yesterday, I hiked an hour along a wooded path blanketed in needles and skirted by green ocean inlets where patches of sun filtered through the white-pine canopy. Upon emerging into a sloping, golden field, I got in my car and drove a few miles further south to the end of Harpswell Neck where the Giant Stairs have views to open ocean. Above me, the sky shown vast, blue and swept with clouds. Though we are still two months away from full foliage in this region, the skeletons of shrubs displayed their naked beauty.

My time spent outside on what was the first truly mild March day in Maine proved vitally restorative, because Calvin suffered his fifth grand mal of the month last night, only three days after a previous one. I think that the nature nurture I'd gotten earlier helped to cushion the blow of hearing my boy scream, seeing him stiffen and convulse, vomit and bleed, then whimper as softly and sadly as the lonely sound of wind creaking the trees.

3.24.2019

march madness

Eleven consecutive days. That describes the spate of seizures that started out this month. On sixteen of twenty-four days in March, my son Calvin has suffered at least one kind of event—grand mal, partial complex seizure or pain/night terror episode. My calendar is plastered in orange, blue and pink highlighter, plus black Sharpie, indicating the different kinds of attacks.

Earlier this month, because of the eleven-day series, I decided to increase Calvin's CBD oil by thirty-percent to see if it would put a dent in them. Nearly two weeks later, the seizures continued to occur on most days and, though the window is a small one, with each increase of Calvin's CBD, the number of days between grand mals appears to be shrinking.

Exasperated, I contacted the maker of Calvin's CBD oil and asked her for advice. She suggested I try a CBD reboot, which means removing all of his CBD for forty-eight hours, then starting back at the smallest dose that it was most effective. For Calvin, that means removing 145 mgs per day, then starting him back two days later at just twenty milligrams, the dose he was on last June when he went forty days without a grand mal. Hesitant of such an abrupt change, I opted first to reduce his morning dose from seventy mgs down to twenty, and his bedtime dose from 75 mgs down to forty, a dose he was on in November when he had the fewest seizures since last June. Yesterday, he was happy and calm, and last night he slept well. In a few days, depending upon what his seizures do, I may decide to do a total reboot.

In the last thirty days, Calvin has had five grand mals, eleven to thirteen partial complex seizures and one pain/night terror episode. It is his worst month-long period since October, and it is on track to be his worst month in over a year. It has left me despondent and wondering again if high doses of CBD can exacerbate complex partial seizures in him. We seemed to see this effect from a previous CBD oil.

Today, Calvin is a bit more amped up than usual. It is hard to know if his agitated behavior is due to the increase in Keppra that we did to account for his recent weight gain, or if it is because he is taking so much less CBD, or if he is already ramping up to have another seizure. Regardless of the source, his behavior is most distressing and, I guess, just the way epilepsy rolls.

Photo by Michael Kolster

3.23.2019

thank goodness

Thank goodness for waking up in the morning with the foggy memory of another dream set in San Francisco.

Thank goodness for sunshine on blistering, cold, windy days, for melting snow and ice, for the coming of spring. Thank goodness for rolling fires in the wood stove, and the sound of it creaking aside the unmistakable harmonies of Steely Dan.

Thank goodness for kick-ass nurses, for shaggy wackadoodles named Nellie, for my eighty-six-year-old neighbor Woody who pours me a shot of bourbon over rocks any time I show up at his door, then sits and listens to my meaningless prattle, and sometimes wipes my tears.

Thank goodness for wise parents of children stricken with seizures, and for an amazingly responsive, informative, kind, generous, smart mother who first made a cannabis oil for her child and now makes it for the rest of our kids.

Thank goodness for a scary-as-shit dystopian horror film that makes at least some of its audience think deeply about Us—about racism, privilege, poverty, oppression, slavery, walls and forgottenness in this crazy-ass, regrettable time in our nation.

Thank goodness for seizure-free days, and for my boy smiling at me when I walk in the door.

Thank goodness for good husbands, loving friends, in-laws who check in, brothers who call to talk. Thank goodness for the same salad I've made nearly every night for years (I kid you not) that always delivers (mixed greens hopefully including arugula, red onion, blue cheese, avocado, cherry tomatoes, croutons and Michael's special olive oil-garlic-mustard-red wine and balsamic vinegar-salt and pepper dressing.)

Thank goodness for the field of amazing, talented, thoughtful, progressive, intelligent individuals lining up with hopes to lead this nation to better things for all of us, not just for a select few.

Thank goodness for friends who love me from near and far, for ones who offer to stop by on nights when I'm flying solo, for ones who dream of me and Calvin and who take us to the farmer's market, for ones who come for coffee, who walk the dog, who join me at a bar or table, who see me grouse and yell but don't pass judgement, who make me laugh and cry. You know who you are.

My pal Woody

3.20.2019

love and light

I'm sending love and light to all of the sweet, innocent kids afflicted with seizures—the scary ones, the kind that hurt, the ones that cause broken noses, bloody tongues, face lacerations, the kind that make them feel as if they're being smothered. I'm sending love and light to the parents of these precious ones who have been cheated by no fault of their own.

I am sending love and light to Hannah, the mother of a little boy named Casey whose seizure I watched on video today and, when it was over, whimpered to his mother, "I don't know why." I wept hearing him breathe, watching his limbs stiffen and tremble and his hands cramp up. I saw my own son in his darling face and wondered if Calvin would utter the same sad words in the wake of seizures, if he could speak.

I am sending love and light to Lisa, whose daughter Emma has been crying for a week since a neurologist advised to reduce her daughters benzodiazepine too quickly.

I'm sending love and light to every mother and father trying their best to navigate the complex and enigmatic world of pediatric epilepsy while sleep deprived, spread too thin, despondent and anxious. I'm sending them strength to challenge and question neurologists. I'm sending courage to trust their guts in the face of doctors who cavalierly pile on medications, downplaying their side effects, aiming for seizure-freedom at nearly any cost, neglecting to consider quality of life.

I'm sending love and light to all the little ones who don't understand what is happening to them, and who have been robbed of a pain-free, care-free childhood.

              
Calvin coming out of a grand mal seizure, 2011

3.16.2019

hell and christchurch

Every so often a stranger, acquaintance, or even a loved one will tell me—usually referring to Calvin and his afflictions—that everything happens for a reason. Years ago, I used to kindly swallow my resentment that anyone would use the trope to justify my son's suffering as some sort of divine plan aimed at teaching me a lesson. Then, as my nerves steeled, I began to meet the notion head on.

Recently, I found myself fielding the topic with someone I am just getting to know. I expressed my rejection of the dogma and my disdain for organized religion. The conversation evolved quite civilly, as I questioned facets of the Bible and her notion of Hell. She was slightly hesitant to admit that, because I'm a non-believer, I will end up there someday. In other words, in the minds of some, Hell is still a real place where unrepentant sinners go, along with, I assume, the majority of the world's population who are Atheists, Agnostics, Muslims, Buddhists, Hindus, etc., even if they're good folks. We spoke a bit further on the subject of Jesus who, despite my secular bent, I think of as having been a righteous dude, someone who I wish more people, namely his followers, would actually embody; the world would be a better place, I feel.

For hours after our conversation ended, I thought on the subject of god and religion. I lamented the fifty Muslim men, women and children slaughtered by a heavily-armed White supremacist yesterday in Christchurch, New Zealand. I regretted some people's rejection that the POTUS is partly to blame because of his maligning of Muslims, vilification of immigrants, regular inciting of violence, and his refusal to denounce White Supremacy.

I was left with many (rhetorical) questions:

What kind of god turns a blind eye to these bloody atrocities? What kind of god neglects the suffering of children? What kind of god would pick one religion over another? What kind of god has such conceit as to damn his own children to eternal Hell simply because they don't accept "Him" as their savior? What about the multitudes of good people who lived before Christ existed, and the billions who may never have knowledge of him? And what happens to shithead Christians? Where do they go?

Pondering those questions about god, while the mist settled on the snowy field behind our house, the wind audibly pressed into the windows, my boy sighed from the room next door, I considered Nature—and came to the same conclusions I always do:

Not one who is merciful. Not one who is just. Not one I can or would want to believe in or trust.

The attack on the Muslim community of Christchurch, while disturbing, was not shocking to me. The White supremacists spouting hateful rhetoric against Muslims, Jews and People of Color are becoming increasingly emboldened to act on those impulses. Their enmity is stoked by bigoted, fearmonging leaders who like to call themselves Christians and who stand to gain from sewing this kind of division. I am once again reminded of the systematic murder of disabled and infirm adults and children like my son Calvin by Nazi's during World War II. Thought to be a stain on the Arian race and a burden to society, they were some of the first in millions of mostly Jews to be exterminated by Fascists under Hitler's rule.

This sickening ideology of White supremacy has never been eradicated. It simply goes from skulking under rocks and in pockets to brazen examples of hatred, violence and bloodshed. It is grounded in abject ignorance. Its zealots exploit baseless fears of other, using scapegoats for their own failings. And, as in the case of slavery and the subjugation of women, they often use God and the Bible as their grounds.

So, perhaps Hell is not a myth as much as it exists on earth in the form of disease, genocide, oppression, war, famine, rape and massacre. Ironically, we even find Hell in houses of worship, and in places with names like Christchurch.

Hands from Hell sculpture, Thailand

3.13.2019

good night

After a twelve-day stint in which Calvin suffered several suspicious events (possible seizures), two grand mal seizures, at least eight partial complex seizures and a two-hour pain/night-terror episode, I decided to increase his Palmetto Harmony CBD oil by nearly thirty percent. My gut and logic agreed that doing so was not very risky, and might serve to thwart some of Calvin's seizures.

Yesterday morning, after his newly increased morning dose, Calvin rebounded well after a grand mal and even went to school. After last night's increased dose, he slept soundly until about two-thirty, when he started getting restless. I laid him back down and covered him several times, but he kept sitting up. Finally, I switched on the light and was able to determine that his diaper was soaking, so I got him out of bed, changed his diaper and took his temp since he felt kind of warm. While doing this, he did not seem seizure-ish at all, and when I laid him back in bed he fell right back to sleep.

When Calvin woke up this morning at six, he seemed pretty good. I did not notice any suspicious behavior, no signs of partial complex seizures such as funny breathing, rapid heartbeat, grumbling tummy, pale skin, panning eyes, fingers in his mouth, or clammy hands. He seemed "normal" for the first morning in nearly two weeks!

This lack of seizure activity in the wake of a grand mal, and having significantly increased his CBD oil is promising. It tells me that the CBD oil is likely not the culprit in Calvin's recent uptick in seizures, though I need more evidence to be convinced. In any case, Calvin had a good night. And though I was awake for almost two hours dreaming of spring, of San Francisco, and worrying about my child, I ended up having a good night, too.

3.12.2019

risk vs. benefit

Despair is sinking its teeth into me again. After three months, each with "only" nine seizures, already this month Calvin has had at least one seizure nearly every morning, including two grand mals. To add insult to injury, last night he had another of his pain/night-terror episodes during which he writhes and screams and cries in bed for hours. I do not know the source of his misery. He cannot tell me what hurts. I have a hunch he might be suffering migraines, perhaps a latent effect from benzodiazepine withdrawal, but I've no way of knowing for certain. There is no soothing him. Acetaminophen doesn't seem to work. Extra CBD seems to lessen his suffering, but not always. In agony, he lunges at me, grabs and yanks my hair. Light flashes like lightening when he bops an errant fist into my eyeball. He kicks and bangs his head against his bed's panel, which I've padded with blankets and pillows to soften the blow. He's like a rabid animal, and I'm in the cage with him trying to save us both.

Finally at ten, after two hours of this misery, plus some acetaminophen and extra CBD oil, he fell asleep in my arms. But I was wrenched awake at 4:50 a.m. to one of his grand mals.

This month's unusually long spate of seizure activity perplexes me. Maybe I can chalk it up to his recent and significant growth in height and weight. Perhaps puberty itself is the culprit. I don't want to believe it is the CBD oil, but I cannot rule it out. I remind myself to avoid fear-based decisions, and to instead look to logic and instinct for guidance. If I consider what seem to be good side effects from increased CBD—better sleep, balance, mood, walking, appetite—and since I know its therapeutic range to be quite broad (between one and twenty-five milligrams CBD per kilogram of weight) I should not be fearful of increasing its dose, which currently is 3.7 mgs/kg of his weight daily, equalling 110 mgs CBD divided into two doses. 

I understand it is within the realm of possibility that higher doses of CBD or THC can trigger seizures in some individuals, but that is also true of antiepileptic pharmaceuticals. The difference, I believe, is that side effects from whole-plant cannabis are likely less harmful, if not beneficial. And so I must weigh the risks and benefits of raising his dose, and not let fear govern my decisions. Moreover, I will not readily submit that these extra seizures are my son's new normal.

So tonight, I will increase Calvin's CBD to seventy milligrams twice daily ... and hope at least some of them stay at bay. 

3.11.2019

love and trouble

Most evenings, sometime between five and six, Michael and I head upstairs with our son to listen to the nightly news before putting him to bed. I sit on Calvin's diaper-changing table and Michael gets into bed with him to cuddle while he chews on his toys. Last night we listened to a rebroadcast episode of This American Life, a two-part installment called Unconditional Love. It was one that I vividly remember hearing for the first time when Calvin, now fifteen, was just two-and-a-half years old. That time, Michael and I had been listening to the second half on the kitchen radio, Calvin perhaps already asleep upstairs, and I recall weeping as I heard a couple describe the trouble of raising their autistic boy.

At the time of that initial broadcast, September 2006, Calvin had not yet received his PDDNOS (Pervasive Developmental Disorder Not Otherwise Specified) diagnosis, a condition found within the autism spectrum. Seven months earlier he had been diagnosed with epilepsy. In August of that year, he had suffered the worst seizure of his life—a forty-five minute grand mal which did not initially respond to emergency medications, prompting us to believe he might die.

By that point in Calvin's life, while toddlers his age were running about, talking, playing with toys, using forks and spoons, our boy could barely crawl, was just beginning to take first steps, had failed three antiepileptic drugs, and was still being spoon-fed and drinking from a bottle. The parents in the episode described their very large teenage son who was often violent. His twin brother, who did not suffer from autism, described a household full of loud noises, fear and stress. The couple went on to relate their difficult choice of whether to put their son in a group home, and what happened next.

Listening to this episode again was timely. Recently, Michael and I have been talking a lot about where we might live once he retires in several years. We discuss returning to our beloved San Francisco, but we have so many questions about such an endeavor: Where in the city would we live? How could we afford it? Would Calvin live with us? Are there group homes there for people like him? What kinds of assistance and programs does the state of California offer people as afflicted as Calvin? After years of living in a relatively small, college town in the Maine suburbs, would city life be too stressful?

The thought of living back in the Bay Area is both exciting and troubling. Exciting for its mild year-round weather, its amazing public transportation, its proximity to the beach, the bay, the Marin Headlands, its diversity and openness, and for the cherished friends we left behind eighteen years ago. Troubling for all the reasons I listed earlier. The thought of putting Calvin in a group home is equally thrilling and petrifying. I worry about his seizures getting out of hand. I worry his medicines will be mismanaged. I worry staff won't change his soiled diapers, linens and clothes. I worry about neglect as well as predators who might abuse him. Mostly, I worry about who will hug and love him unconditionally like we do. But I know I can't go on taking care of him forever; at some point—hopefully not for another twenty-five or so years if we make it that far—Michael and I may be too feeble to handle him, and/or we may not want to. Once Calvin graduates high school when he is twenty, perhaps it will be better for him to be in an environment with more activity and stimulation than we can offer him at home.

For now, though, we'll keep on keepin' on. We'll traipse around the house and yard with him in endless circles. We'll get up nightly to lay him back down and cover him. We'll give him extra meds in the wee hours of the morning if we expect a seizure coming on. We'll change mountains of dirty diapers. We'll bathe, dress and feed him. We'll burp him, like a baby, on our laps. We'll brush his teeth and clip his nails and wipe his drool. We'll hold him while he seizes. We'll endure his tantrums, mood swings, screeching, agitation, and perseverations—all of which, by the way, have improved on a higher dose of CBD oil. Whenever possible, we'll continue to bring him out into the world. Most of all, we'll keep loving him unconditionally despite his troubles, caring for him as best we can, and searching for other people and new places that will.

3.10.2019

snowy milestone

For the very first time in his life Calvin walked a loop in our backyard while it was covered in snow. Managing to keep him upright as he careened along a narrow path of icy footprints was difficult. A few times we nearly toppled over each other. At one point, I looked down at his face and saw him smile. As we plodded clumsily along, he used his free hand to reach out and pat his favorite shrubs. He seemed happy to be outside in the yard again after so many months pent up indoors.

You may wonder why, at fifteen, he's never done so before. It's partly because he cannot walk in snow boots or rain boots; they are too bulky and roomy for him to manage. Also, his current ankle boots, though waterproof, are not high enough to walk in deep snow. And so yesterday, the snow having begun to melt in the sun and mild temperatures, was a perfect time to give it a go.

I wish I had a photo of Calvin traipsing along in the expanse of white, wish I had a photo of his smile. But I didn't have my camera or phone on me, and so I'll just have to make a note of our special, snowy excursion in my mind.


3.07.2019

nocturnal hours

It's hard to believe that five years have passed since I began making a THCA cannabis oil to treat my son's epilepsy. Shortly thereafter, I started the difficult and protracted effort of weaning his benzodiazepine, Onfi, aka clobazam. The endeavor took us four years, but we succeeded. What I find most noteworthy since starting Calvin on cannabis oil is that his daytime grand mal seizures—despite the benzo withdrawal—have virtually disappeared. The seizures, which were common in late afternoon, have been largely limited to nocturnal hours; he has suffered only a handful of them during the day in those five years. Calvin's partial seizures, on the other hand, often come in clusters and often occur in the wake of grand mals, usually presenting in the wee morning hours, yet still nocturnal, as they did today and on most if not all of the past six days.

This spate of complex partial seizures is disheartening. For the past few months, the Palmetto Harmony CBD oil seemed to have reduced their monthly numbers from double digits down to three or four. Regrettably, however, as I have been increasing its dose, we have not yet seen them disappear as I had hoped. I might now know why.

Yesterday, after Calvin received a meningitis vaccination, I weighed and measured him. I've sensed he has been going through a growth spurt, but I was surprised to see he has gained nearly seven pounds and has grown over an inch since October. This rapid and substantial weight gain prompted me to slightly increase his bedtime Keppra to equal a previous level, effectively zeroing out one variable as I continue to titrate his CBD oil. My hope is that it will lead to better seizure control. I'll let you know.

This past week's nocturnal seizures have meant that I've been waking up between two and three-thirty and getting little if any sleep from then on. Sleep deprivation is a form of torture, spiking my despair, anger, impatience and resentment. And yet, when I pull myself from its grip, get some rest, take a shower, I can see my way out of its shadow and am heartened when I remind myself of Calvin's seizure-free afternoons. I am pleased with how quickly he now (usually) bounces back from grand mals. I'm consoled by the notion he is finally growing, is taking a fraction of the drugs he used to, is walking tall, standing steady, having fewer mood swings and tantrums, and is more often going to sleep when his head hits the pillow. And though I still have to get up in the middle of the night, watch him seize, deal with the aftereffects of grand mals, change poopy diapers, dress, bathe and feed a fifteen-year-old, I can say with confidence that my boy is easier to take care of these days.

Photo by Phoebe Parker

3.04.2019

out on the ice

The ice on the pond is still two to three feet thick. Pickup trucks park on it. Folks speed snowmobiles and ATVs across its expanse. Fishermen, like my husband, drill holes in it from which to fish.

Thirty-five degrees and no wind to speak of, yesterday was mild. A glorious sun came out from behind the clouds at times. Calvin's kick-ass nurse, Rita, watched Calvin for several hours so I could get out of the house. Michael and I drove twenty miles, then trudged through deep snow to meet our friend Macauley who had set up shop in the middle of Pleasant Pond, which would be considered a lake where I come from. Almost immediately, we began catching fish from eight-inch holes: yellow perch, white perch, crappie, pumpkinseed. Michael caught a hog: an eighteen-inch small mouth bass. It flopped on the ice for awhile—its gaping mouth seeming to indicate its suffocation—until we realized it was too big and small to keep. Michael dropped it back into the hole, watched it float sideways, tail up, before it caught its breath in the frigid water then swam into the shadows.

A few hundred yards from us, a rowdy group had set up a tent and were manning several ice holes. The young men were roughhousing with the giggling kids, picking them up, shoving them and tossing them around. Their happy banter skipped across the snow. Though I was glad to have been unshackled from Calvin for an afternoon, I lamented his absence and all the reasons that made it so—his fragility, his chronic illness, his inability to walk in snow boots, to play and keep warm, his incessant staring at the sun, his incapability to understand what might really be going on.

After nearly three hours on the lake, my feet started getting cold, so we said so long to Macauley, who would spend the next several hours there catching more fish, watching the sun set, and then taking a long walk out on the icy lake after dark. I told him how luxurious that sounded, then I imagined myself—in another life—doing so.

3.01.2019

ninety seconds

Blood pools on my son's pillow as he bites the side of his tongue. His feet shake. His wrists knock. His guts buckle. Ninety seconds, the seizure takes.

In bed next to him, I scoop him up. A pint-sized teenager, he's getting bigger. Must be over sixty pounds by now. The top of his auburn crown very nearly reaches my jaw. But crawling on the kitchen floor and splashing in the tub, he looks quite small. I can still sit him on my knee and cradle him in my arms.

What is lost in ninety seconds of seizing? Time? Brain cells? Emotional and physical elasticity? A year of life? Precious sleep? Dreams? The ability to block the path of the next seizure?

A friend described the making of neuropathways in the brain as centuries-old rivers etching ever deeper ravines into the landscape. I once was told this is what happens each time someone seizes. Neurons carving passages. Repeated patterns becoming habits. Electric currents snaking along paths of least resistance. Firing synapses conducting dreadful symphonies in the brain. Spasming sinews yanking muscle and bone.

What is lost in ninety seconds of seizing? Breaths? Heartbeats? Potential? Joy? Peace? A bit of memory? Sanity? Grace? Hope? Well-being?

What is lost from thousands of these seizures, each ninety seconds?


Photos by Michael Kolster, Christy Shake and Ann Anderson. Drawings by Peter Bruun.

2.25.2019

in my element

I felt nearly like my old self last night—giddy, relaxed, excited, even a little rowdy—getting gussied up in some fancy duds I mined from Salvation Army. What you can't see in the photo below is that I am wearing tails over of the strapless, shirred-tulle dress. Comfy in my black patent flats, a bit of bourbon warmed me in the wake of an excruciatingly long, icy, frigid winter "vacation" week, which confined us to home with an oft-agitated kid. At six o'clock, I kissed Michael goodbye and headed south in the rain, carpooling with Freddy Mercury (my friend Vin) and two others from Queen (my buddies Aaron and Dan), to attend our friend Swifty's (my pal Tim) annual Oscar gala.

Thirty miles away, we were greeted by a venue filled with tulips. A throng of handsome men sporting tuxedos and dinner jackets, some dressed in drag, plus a smattering of women, drank Prosecco and hammed for the camera. In a rare, live performance, my buddies from Queen rocked their hit, We are the Champions, to the surprise of many happy onlookers. On three walls, a half dozen big-screen televisions broadcast the Red Carpet. Swifty, our most beloved and dapper host who always goes all-out, if not over the top, for his guests, was at his best emceeing the event. As the awards show began, we dined on delectable spinach salad, stuffed pork tenderloin, flaky haddock smothered in a divine white sauce, roasted root vegetables and penne. I might—just might—have gotten a little bit tipsy.

The night reminded me of parties I threw decades ago (has it really been that long?) in my sweet Haight-Ashbury flat, where scores of friends and strangers dressed in their finest threads rocked the house, eating good food, drinking probably too much, laughing and dancing. I'm in my best element at a good party, even more so when I can dance.

By the time we left the event, the crowd had dwindled to some hard-core enthusiasts, and the rain had stopped. On the way home, Queen sang Cameo's, Word Up, from 1986 as I listened awestruck in the backseat remembering what it felt like to be young(er) and unencumbered. I wished they'd sung hits the whole trip north.

It was just about eleven when I finally rolled into bed. In the attached room, Calvin slept soundly under his fleece and down comforters. Nellie and Michael were deep in dream state. Closing my tired eyes, I wished Calvin would make it through the night without any seizures, hoping he would manage to go back to school, because—shindig or not—this party girl needs some rest.