life sucks, except when it doesn't

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

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

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

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

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

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

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

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

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

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

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

Life sure sucks. Except when it doesn't.

A similar scene from four years ago.


the view from here

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

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

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

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


freedom to move

I am you. —Anonymous

Never apologize for being human. —James, Florida

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

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

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

Thank you for being real. —Nancy

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

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

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

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

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

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

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

Makes complete sense to me.

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

Learn some facts about school shootings here.

Photo by Michael Kolster


my apologies

Dear World,

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

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

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


Photo by Michael Kolster


close your eyes and smile

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

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

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

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

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

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

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

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


a hard rain

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

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

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

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


a bad day for benzos

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

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

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

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

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

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

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

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

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

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

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