hemmed in

If you look closely, you'll see me in there somewhere, the edge of my mostly-auburn hair mingling with leaves and twigs, baggy bloodshot eye, wearing my shabby blue fleece robe that our neighbor thinks makes me look like a ward from an insane asylum. His estimation is fitting. One of us might be heading there, Calvin or I.

After yesterday's string of partial complex seizures—one every hour from eight-thirty until two—Calvin was impossibly restless on either side of last night's grand mal. This morning he is still unhinged, his repetitive humming and growling having not let up after hours on end. The kid is certifiably nuts, and he's sending me there. Both Michael and I tried sleeping with him, hoping to calm his inner demon so that everyone could get some rest, but because of Calvin's derangement, which must be some sort of benzo withdrawal symptom, sleep proved elusive for all of us ... again.

While walking Nellie yesterday in near-freezing, bone-chilling winds, I sat on a stump in the sun. It was then that I noticed my right eye hurting. That morning, Calvin had inadvertently stabbed it with several rigid fingers. Each time I blink, it hurts. Squinting, I looked out over fields, still covered in snow and flanked on all sides by naked oaks, maples and white pine of the same size—a wall of trees, really. Much of Maine makes me feel this way: walled in. These parts are mostly flat, and considering how close we are to the ocean as the crow flies, it takes some driving to get to a place with a decent vista much less a wide beach or clear view of the open sea. The experience I have at home raising Calvin, hemmed in by these four walls and by his condition, is the same one I have in Maine. I think I'll call it hemmed-in syndrome.

Perhaps if I were younger and not in love I'd run away from my reality. Last night things were very nearly as bad as it gets save trips to the hospital or the hours of night terrors Calvin sometimes suffers and we somehow cope with. It's these times when I imagine leaving my family behind and escaping to a place with mountains and hills right in my backyard, with ample and easy views of horizon meeting sea, of endless beaches minutes away and springlike weather year round. I'd go somewhere cosmopolitan where throngs of people busy the streets, where restaurants are bustling, where there are decent cafes and gorgeous parks in which to linger and explore, and interesting neighborhoods through which to tread for hours. I'm talking about a place like my beloved San Francisco. Maybe even LA. Perhaps some day I'll get back there and stay.

But for now I am here at home, today with my manic child. In doing endless loops with him around the house this morning, he stopped and I stood to block his incessant staring at the sun. Looking up, I saw this photo on the wall, one Michael made a couple of years ago. In its glass I saw my reflection, though dark, as well as windows through which I could see trees and light from outside. I exchanged tepid coffee for camera to capture the image. Then I dove into the windy scene of branches, leaves and sky—but for a divine moment no longer hemmed in—becoming a virtual traveler through time and space to a place without Calvin or angst, sleeplessness, seizures and mania, far beyond these walls which hem me in.


getting back

I've mentioned before how epilepsy has a way of catching up, of getting back. Well, after twelve days with no seizures at all, Calvin just had his fifth scary partial complex seizure today. I say scary because, besides his pale lips and shallow breathing, he gets this look on his face as if he's seen a monster, or perhaps his imminent death (if he could comprehend such an abstract notion.) Frantically, he grabs for me, and his body begins to tremble and shake violently. These are not a grand mals; he remains conscious and his tremors are not rhythmic.

The extra doses of THCA oil I have given him have not prevented each subsequent seizure, so, grasping at other remedies, I took the bottle of CBDA vegetable glycerin the folks at Palmetto Harmony sent to me and gave Calvin ten drops. A month or two ago, I had an epiphany that perhaps CBDA oil might help Calvin if he continues to suffer too many seizures in the wake of finally eliminating his benzodiazepine. Right now, I've got the Mozart playing (I read a study, albeit a small one, which showed that listening to two hours of Mozart a day reduced seizures in a majority of subjects by as much as fifty percent) while watching my boy closely for any signs of another partial seizure.

My next big plan once we are a month or two away from Calvin's last dose of clobazam (we are just over three weeks past it now) is to stop his CBD oil to see if his partial seizures disappear or if it makes a difference at all; reducing it in the past has seemed to lessen his partial seizures. I may replace it later with a CBDA oil to see how that affects his seizures.

Thankfully, though, the past week or so Calvin has been an angel with the exception of some brief manic episodes on most days. He has been compliant and walking well and strong. He has been smiling and happy and enjoying hugs and kisses and tickles. He has been sleeping pretty well and has had only one grand mal seizure in nearly three weeks.

But like I said, epilepsy has a way of getting back. March, which came in like a lamb, might go out like a lion. And he had his sixth partial complex seizure just now.

Calvin during a similar partial complex seizure years ago


a new view of the moon

I used to love the moon. When he was born, Calvin's face was moonlike—round, bright and creamy. Though I have developed a more complicated relationship with it since Calvin began having seizures, which sometimes seem triggered by the full moon's intense gravity, I still love the moon. Today, I appreciate it even more having seen this three-minute film reminding me of its beauty.

I was weeping long before the film maker said the words, "We should look up more often." Yes. Yes we should. And realize we all live on one Earth, and that life here is short.

A New View of the Moon from Alex Gorosh on Vimeo.


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