reason and being, purpose and meaning

I watch as a boy of five or six falls off of his bicycle. Somewhat remarkably, he lands squarely on his hands; his feet quickly follow. Having escaped injury, he rises and claps triumphantly, then begins to do a goofy, self-styled boogie, which is perfectly annoying to me. The caption on the video reads, "This should be your reaction when life challenges you."

For starters, I'm not a fan of the word, "should." I try not to "should" anyone, including myself. The rest of my cynical response to the video was—like most things—informed by my profoundly disabled, nonverbal, seizure-prone son. Calvin had just come off of a very shitty few weeks which began with back-to-back grand mal seizures, followed by waves of excruciating pain of unknown origin, the likes of which reminded me of Hollywood torture scenes. Ultimately, Calvin landed in the emergency room on New Year's Eve with an agonizing case of viral gastroenteritis and/or a problematic gallstone, which—after reviewing X-rays, a CT scan, and several blood draws taken at ungodly hours—the doctor said had likely caused the aspiration pneumonia in Calvin's left lung. We were released from the ER the following morning, and though I was relieved to be out of there, I didn't feel like dancing a jig; I felt only grateful that it seemed we may have dodged the latest bullet in Calvin's lifelong barrage of them.

Calvin reminds me daily that not everyone is equipped or inclined to celebrate or give ourselves high fives after life's nasty pitfalls, even if we eventually land on our feet. Sometimes, some of us come away from challenge and hardship feeling confusion, guilt, insecurity, anger, angst, resentment, exasperation, despair. My first reaction to the dancing boy was to acknowledge that not everyone is sailing along in life in the first place, or lucky enough to avoid misfortune such as hunger, war, poverty, displacement, abuse, injustice, depression, the death of a child, or one born to a life of profound physical and cognitive limitations and miseries, like Calvin. Call me a Debbie Downer for criticizing what some might consider a harmless, light-hearted video. I mean, I get the gist, and I'm generally an upbeat optimist who sometimes even welcomes challenge, however, I look at certain subjects through a more serious lens than others.

The video also reminded me of the countless times people have told me that everything happens for a reason. Though the sentiment is meant to be comforting, I generally respond by disagreeing, then go on to explain my preference for the notion of gleaning great purpose and meaning from life's hardships (a practice which can also be elusive to some) as opposed to there being some mysterious reason baked into every awful thing that happens. If I probe, some folks claim that bad things happen to teach us lessons. I usually respond by telling them I am not worthy of my son's suffering. Others say we can't know the reasons for mishaps and tragedies, but that God has a plan. I'm always left wondering: if there is an omnipotent god with a plan for everything, why does it so often include godawful misery, and how is that not deeply disturbing if not unthinkable? Would an all-powerful god orchestrate every little scrape and bruise I get and/or the immense suffering my son endures? Does God stage and sanction starvation, war, genocide? What kind of god has a reason—and what in God's name could that reason be—for the torture of "his" beloved children at the hands of others, or from excruciating illnesses? And if God isn't responsible for orchestrating horrors such as mass shootings, catastrophic fires, floods and earthquakes, then why doesn't "he" rescue us from suffering? Even we puny humans will do virtually anything in our power to save our children from pain. Why doesn't God? And if there is a reason for everything, what does that say about the notion of free will? Lastly, some people say God is testing us, and my immediate response is to ask: for what purpose? To what end? Is God conducting some test of fidelity, and if so, what deep conceit does that reveal? And what would be the point of testing us, knowing we are impossibly fallible beings?

I've found myself ruminating over the bicycle-boy video and related conversations for weeks, and I'm taken back to my childhood. Despite being raised Catholic, I began doubting the existence of a merciful, omnipotent god when my best friend's two-year-old sister nearly drowned in their nearby swimming pool. I had been outside when I heard the dog barking and the mother discover her baby girl lifeless in the water. I had never heard a grieving human shriek and howl so animalistically. She fished her daughter out of the pool and resuscitated her. The child survived, but was in a coma for at least a week and emerged from it no longer a toddler, having lost every one of her acquired skills. Her recovery, while not utterly complete, took years. I'm surprised her mother survived the ordeal, and I wondered if she felt as if God were punishing her for some petty transgression. It didn't make sense to me that a merciful god would allow any of "his" flock to suffer and grieve so deeply. It all seems so utterly senseless.

In continuing to ponder the theory that everything happens for a reason, I wondered if maybe that reason is merely that we exist. Perhaps it's as plain and simple as that: we exist, and therefore things happen to us. It seems reasonable that all things great and small, as in nature—rain, sunshine, hurricanes, earthquakes, moss growing on trees—just occur without any divine reason. In other words, as the saying goes, shit just happens. It makes sense to me—and frankly is far more comforting than the notion of a god with a secret plan sitting idly by while we are tormented—that our every move isn't governed, decided, judged and orchestrated by a god. And, too, maybe overcoming life's nasty challenges and curveballs isn't always reason for smug celebration, but rather, a time for reflection, gratitude and humility, especially considering so many of our fellow beings, through no fault of their own, live in a world of misery.

Photo by Michael Kolster, August 2021

hell and angels

i don't believe in religion or in its hell or angels. to me, that hell is an absurd, fantastical, primitive invention, a relic of the dark ages. but hell on earth is real. i know, because it exists in the misery of my kid, in the pain and panic attacks he has that sometimes last for hours and deprive everyone of sleep. it's in the way he thrashes, cries and writhes in bed. it's in the agony and sadness etched into his soft forehead. it's in the way that so few things help my sweet kid when he's like this. 

my perdition is in witnessing, in my helplessness and incomprehension, my inability to exactly understand the nature of his hurting, the meaning of his expressions. he has no words, only coos or hums. at hellish times, he shrieks and moans. it's this mother's agony to observe.

so, too, i feel the punishment of eighteen and a half years of "raising" an infant-toddler-teen. it's a job that doesn't come with vacations or weekends. all too often it is tedious and grueling. it requires i be on duty, or on call, around the clock every day of every month of every year. to keep him safe and warm and clothed, clean and dry and fed and loved. to keep him out of harm's way like any parent would. to comfort him when he's out of sorts. to give him medicine even when i can't know for sure his misery's source.

while running the other day, i heard a car skid to a stop. my heart skipped a beat thinking it was my kid—the rubber squealed as if it were his seizure-shriek. but it was just the sounds of the street. years ago, when we often called 911 for calvin's stubborn fits—one so long we thought his body would give out—i used to run after ambulances. while walking the dog on campus, i'd sometimes hear sirens screaming past. i feared they were headed to our house for my boy. i'd chase them till they'd turn down different streets. it was a godawful—hellish—frightening, worrying feeling.

no amount of writing can sufficiently describe how heart-wrenchingly difficult this kind of caregiving is. this witnessing of my child's suffering. the feelings of guilt rising from punishing frustrations born from lack of sleep, getting smacked by his errant fingers and fists, listening to his tiresome and irritating bleating, coping with his poopy diapers and sopping bibs, watching him repeatedly seize. the hell i feel is in the most of it. what's the worst, though, is his frequent misery. a kind of hades i really hate, and from which it seems there's no escape.

and so, no, i don't believe in god's hell or angels. but if there were angels, my precious calvin—with his impish grin, little muscles, strong embraces, smooth skin, huge eyes, cute dimples, ecstatic smile when we kiss him, his deep-down goodness and sweet disposition (when he's feeling well)—would hands down take the cake. 

matter of reflection

There's so much to be grateful for every day—running water, food, heat, electricity, the freedom to move, democracy. We've got infrastructure that pretty much works, and grocery stores regularly stocked with essentials for our homes. We've got restaurants in which to dine, and hospitals where we can (hopefully) heal if we're ill or hurt. We've got Amazon and Apple, Zappos and Google, Netflix and Zoom. We've got public servants: librarians, teachers, fire fighters, legislators, road workers, bus drivers, garbage collectors and cops. We've got farmers, truckers, builders, manufacturers, artists, musicians, chefs, servers, grocery store and retail clerks. We rely on all of them to supply what we need and want, and to get shit done. They're there for us despite some people's petty tendency to complain and protest. 

There's so much to grieve—war, illness, debt, death. So many things to love, to loathe, to lament. These are strange and harrowing times. The world is turning upside down and inside out. Millions are hurting while billionaires continue to enrich themselves by exploiting the labor of others; they pocket record profits by gouging the rest of us (blame them for stagnating wages and inflation) and by not paying their share of taxes. And there's another power grab: the unjustified, unprovoked war that Pootie is waging against Ukraine. It's all so sick and twisted.

I consider the Ukrainians, and others in war-torn nations, whose homes, livelihoods and families are being blown to smithereens. Because of Pootie's war, they have little to no access to their homes, their schools, their hospitals, their critical medications to treat chronic conditions. I imagine legions of them seizing, not just from epilepsy, but from traumatic brain injury, diabetes, dehydration. And what of expectant mothers, new mothers, infants and preemies? Pootie's troops are bombing children's hospitals and maternity wards. His lies and crimes against humanity are unfathomable. Someone has got to bring him to heel.

Here, I reflect on my fortune. I recline on a comfortable couch with a full belly, a small glass of red wine and a large one filled with clean water from a tap that never runs dry. My only palpable worry at the moment is whether my epileptic child might seize tonight. Even then, he's likely to make it through, unlike so many of war's refugees trying to flee besieged cities.

Wartime calls to mind a favorite rumination from, The Celestial Worlds Discover'd, Or, New Conjectures Concerning the Planetary Inhabitants and Productions. It goes:

How vast those Orbs must be, and how inconsiderable this Earth—the Theatre upon which all our mighty Designs, all our Navigations, and all our Wars are transacted—is when compared to them. A very fit consideration, and matter of Reflection, for those Kings and Princes who sacrifice the Lives of so many People, only to flatter their Ambition in being Masters of some pitiful corner of this small Spot.

—Christiaan Huygens, 1698

It is clearer now than ever how much Pootie and his stooges' evolution as human beings has been stunted. I wonder what tainted ingredients make such depraved megalomaniacs.

My thoughts return to little Calvin sleeping safely and soundly upstairs. I wonder what he dreams about. I wonder if one day he'll be orphaned. I wonder if one day soon war will return to these shores. Then, I recall images of the innocent Ukrainian people caught up in the Russian invasion: a mother and her children shelled while trying to escape bombardments; a man pushing his bicycle through ravaged streets strewn with debris; a father clutching his dead child riddled with shrapnel; bodies wrapped in black plastic being thrust into mass graves; mothers grieving over their dead boy soldiers; a pregnant woman dying on a stretcher. And I wonder again, like I do about Calvin's suffering, how much these good people can endure, and what more I can do to ease it.

Photograph: Evgeniy Maloletka/AP

dear confederate

Dear Confederate, Neighbor,

You might wonder why I'm writing, Bear with me. I'll try my best to explain.

In the span of ten days my son Calvin has had nine seizures. He has endured thousands of these attacks since before the age of two. He's now sixteen. Constant assault comes not only from the seizures but from the drugs meant to suppress them. The root of his epilepsy, a brain anomaly, also renders him speechless. He still wears diapers, and can't walk without some assistance, especially near traffic or on rough terrain. He is legally blind, negotiating the world much like someone who can't see a few feet in front of their face. He can't really use a spoon and must have his food doled out in small pieces or he's liable to choke. He can't bathe or dress himself, or adequately express himself. He enjoys no independence. Days are endless, both of us largely confined by his condition.

I often wonder how long a brain and body can withstand such pummeling. Do the seizures torture his organs, his muscles, his joints, his bones? No doubt they make him struggle to breathe; I see it every time he seizes. How must he feel when his heart pounds so feverishly? Is he fearful when the seizures take aim? I gravely dread a future captive in this agony.

Dear Confederate,

On a recent escape, I took Calvin on our usual car ride—Pleasant Hill Road, Flying Point, Bunganuc, Woodside, Maquoit—except this time we drove the opposite way. At one point, on a hillside clearing next to a modest house, I spotted a strange and unsettling sight: a confederate flag. It was hoisted on a pole so tall as to belie any humble claim of it's intent. I wonder if you put it there to provoke.

As if doubting my eyes, I turned around in a gravel lot near the bay where at low tide folks break their backs digging for clams in the muck. Driving by for a second look, I craned my neck catching sight of your flag in my blind spot. In the absence of a mailbox, I tried to guess your address. I meant to send you a postcard or letter relating my dismay of the emblem which reveres traitors who defended a sinful and hideous institution. I want to describe its hurtful symbolism honoring those who fought to preserve the purchase, sale, exploitation and enslavement of human beings for profit.

Dear Confederate,

Do you know the enslavers' victims—innocent African men, women, and children—were kidnapped, stripped, shackled, and crammed into the bowels of ships like animals, with no room to move, little foul air, water or food to intake, steeping in each other's urine, vomit and feces for weeks? Do you understand entire families were torn apart? Infants and toddlers, tweens and teens were ripped from their mothers' embrace. Husbands and fathers, mothers, sisters and brothers were sold downriver. Children and adults were forced into grueling labor sunrise to sunset. The enslaved were terrorized, tortured, beaten, whipped, raped and lynched for the smallest infraction, if any. Do you know that these innocents endured this hell at the hands of White people for 400 years only to be set free without a penny for their labor? And it didn't end there; slavery's legacy morphed into other forms of atrocities and oppression such as massacres, lynchings, Jim Crow laws, segregation, bombings, disenfranchisement, redlining, the war on drugs, police violence, and today's mass incarceration. Did you consider that these injustices indelibly scarred, marginalized and financially crippled generations of virtuous, hard-working Americans? Are you unaware? Led astray? In denial? Fine with it?

Dear Confederate,

Again, I think about my son, Calvin, one of the sweetest beings you'd ever meet. I want to tell you, Confederate, how difficult life is for him. I want to chronicle for you the eternal beating on Calvin's brain and body, his suffering, his aches and pains, his constraints. I want to describe the relentlessness of it all, my son's regrettable inability to understand why this should be happening to him, why he is seizing and hurting and can't speak—this dutiful boy of mine, this pure and innocent soul who is deserving of none of this torture. I want you, Confederate, to understand how woeful it is to know that my son can't escape his tormenter, and that no matter what I do, I can't liberate him from his misery. I want you to imagine, know and feel my son's pain. I want you to witness our wretched situation. 

More so, Confederate, I want you to imagine yourself and your family shackled and enslaved—for that particular fate was infinitely worse than any suffering my son or I will ever have to face. I want you to understand what the rebel flag might mean to Americans who are descendants of the enslaved who live in its miserable wake, and for we who bear witness to the injustices they still face. 

Dear Confederate, let fall your flag and surrender for the sake of all America.

Calvin resting and eye-pressing after a spate of seizures.

struggles

The snow hadn't yet begun to fall when I heard my son cry out at nine last night. I only half expected the seizure's arrival, this one in the wake of the full moon and a decent eleven days since his last grand mal. As usual, I crawled in bed next to him to make sure he kept breathing—the twenty minutes or so after a grand mal being the most risky to succumb to SUDEP (Sudden Unexpected Death in Epilepsy.) Just as I was falling asleep, Calvin clocked me in the face with his fist while he was shifting. I decided it was a good time to go sleep in the bed with Michael. Sadly, the extra THCA oil I'd given Calvin after the first seizure did not thwart the arrival of a second grand mal at 4:45 a.m. Perhaps it would have worked if I'd waited until midnight to administer it, but I was so goddamn tired I just couldn't.

By six the snow was coming down in gnat-like flakes, some of them floating upwards and crosswise as they neared the window. Like most everything in these coronavirus days, snow in May, even in Maine, is strange. Watching it come down, head on my pillow, I imagined it as some magical dust, some cooling off of the white-hot suffering, despair, frustration and anger many people are feeling during these essential shutdowns.

Slowly, I rose to see the garden, worrying that the young peony shoots might have been burned by the night's frost. Since yesterday, many blossoms have opened on the pink and purple small-leafed rhododendrons, a white one having already beat them to it. The garden is gradually coming into it's glory, even as deciduous trees are still mostly naked, save some tiny leaf buds emerging.

As if winter, today has been spent indoors trying my best to help my suffering kid feel better. He's not back to baseline, is more restless than usual, has clammy hands, stinky breath, foamy drool and no appetite to speak of. I'm tired and achy, and the sore throat I developed the other day is only slightly better. Still, looking out over the garden, the snow having finally given up without sticking, I'm feeling grateful. I have a house chock-full of windows, a gorgeous garden to devour and in which to wander, a sweet and loving husband who does all of the cooking, friends who leave delicious care packages on our porch, good books and films to lose myself in, and the privilege of not being a frontline healthcare or other essential worker during this pandemic.

But despite all there is to be grateful for, I'm still nervous about what is going on in this country, and ashamed of some Americans' behavior. It vexes me to hear that grocery store employees are being harassed by customers who do not want to follow state guidelines for wearing masks in public. I'm incensed at the ongoing lies, backpedaling, blame-shifting, cronyism and hypocrisy coming from the White House. I'm sickened by the news of hate crimes—so many still going unpunished—of innocent Black and Brown people who, amid their ongoing oppression, are disproportionately affected by this pandemic.

Outside, it's still below forty, though with winds at eighteen miles per hour it feels like the Arctic. But I'm sitting here at my desk with a view of the garden. Michael is home taking care of Calvin, who is doing slightly better and will be heading upstairs to bed fairly soon. I've just lit a fire in the wood stove and poured Michael and I a couple of early cocktails. Later, we'll warm up some ridiculously delicious chicken enchiladas with spicy salsa verde, and discuss the messed-up state of the nation. Then, we'll muse on gratitude, and I'll go to bed early and tired, though hopefully not pitying the situation with our own messed-up kid, but rather sympathetic for those out there in the world who are truly struggling.

collective breath

On the way to Woody's, walking hand in hand with Calvin and Smellie, a friend approached on the other side of the street riding his bicycle. We shouted above a passing car or two, then he peddled across and stopped a safe distance in front of us. After chatting a bit, I asked how he and his family were doing.

"Oh, we're struggling," he said in a resigned tone.

My heart sunk.

"Yes, everyone is struggling in their own way," I replied.

He smiled, put his head down to find his peddle and nodded. We said fond goodbyes as he rode off.

When Calvin, Smellie and I reached Woody's house, I called him on the phone. When he picked up, and from opposite sides of his window, we complained about the biting wind, and I told him about my conversation with the neighbor. Woody's silence made me think he agreed that life is strange and difficult right now.

I've been thinking about the tens of millions of unemployed Americans struggling to make ends meet. While I believe we need to continue to shelter in place to mitigate the stress on the healthcare system, I'm sympathetic to the need for hurting people to get back to work. So, too, I've been lamenting those who are sick and suffering and who have lost loved ones to this insane virus. I've been missing seeing friends, gathering around a table to share food and drink and to shoot the shit from across a table. I miss the college students terribly; their absence is palpable and I know it has been hard on them to be away this semester. I feel things have been particularly devastating to doctors, nurses and teachers, especially those with young families.

Strolling home from Woody's house, Calvin turned to me for a hug, and while I embraced him I took a deep, collective breath for everyone.

invisible giant

Walking Calvin around the block yesterday felt like dragging a stubborn dog. He'd start and stop, swerve and hitch, sometimes weaving behind me even as I held onto his wrist. At one point he pivoted and fell onto his back at the edge of the sidewalk. Since my right hand had Smellie by the collar, I wasn't able to prevent his fall. Still, I was able to let him down slowly so he didn't hurt himself. Then, he wouldn't budge, so I had to lift him back up. I became frustrated, let Smellie go (she's such a good dog) and yanked my careening kid the rest of the way home.

Thankfully, the remainder of the day was mellow, consisting of a nice car ride and lots of cuddling. While putting on Calvin's nighttime diaper I asked him if he was tired, and he made a little hum. He fell asleep as soon as his head hit the pillow.

After sleeping soundly, Calvin aroused at eleven p.m. in the thralls of a focal seizure, wide-eyed, restless and trembling terribly. I dripped some THCA cannabis oil into his mouth and held his head so the oil had time to absorb and so he wouldn't drool it out. I took his temperature, changed a soaking diaper, then crawled into bed with him. Three hours later this repeated, and a third time an hour after that. At four-thirty I gave him his morning Keppra hoping to avoid more fits, but the strategy didn't work and at five o'clock he had the worst focal seizure yet. As I was reaching to turn on the light, Calvin, in the middle of the seizure, began to sit up, put his hand on the side of the bed, slipped and fell out. I halfway caught him, softening his fall but not before his lip caught the sharp corner of the wooden step stool. Michael helped me pick him up and put him onto the changing table where I syringed in his morning cannabis oil, noting a lip that was bleeding and beginning to swell. The seizure began to worsen. His tremors became so violent he looked as if he were a rag doll being shaken by an invisible giant. Something akin to fear filled his eyes as he kicked the arm of the lamp clamped to the end of his changing table. I put my arms around his neck and held him closely until his trembling ebbed then quit.

When it was over, I crawled back into bed with him, lamenting so many seizures amid what had been shaping up to be another good month. Stroking Calvin's face in search of possible fever, my thoughts drifted to the little girl so much like Calvin who died last week from likely complications of the coronavirus. Her name was Charlotte Figi. She was thirteen years old and, without knowing it, had become the face of CBD oil as therapy for epilepsy. Her mother, Paige, had been my mentor of sorts—one of only two parents I knew of who were treating their children's seizures with cannabis. She had suggested different strains of the herb with which I could make my own oil (this was years before it could be ordered online and shipped) and she walked me through how to safely wean Calvin's benzodiazepine. As I embraced my son, I wondered what this dutiful and loving mother, this pioneer and champion for so many, was feeling. I wondered when she might begin to feel relief from the loss of such an extraordinary child who filled so much space with her brightness. I wondered if she felt any modicum of solace in knowing that the invisible giant which is epilepsy no longer haunts and harms her daughter. I wondered if, one way or another, Calvin and I will ever feel that same peace.

Photo by Michael Kolster

indifferent nature

I'm not one for praying, nor am I looking for answers as to why the world exists. I don't need evidence that there is life, intelligent or otherwise, on other planets. If I look to statistics and consider the magnitude of the universe, I already know the answer, which is yes. Though I lament life's miseries, I don't wonder why there is suffering in the world. Mankind can be cruel. Nature is indifferent. I only wonder, when reckless and despotic leaders war, oppress, starve and shell civilians, why others allow them to continue. But I guess I know the answer to that, too: power, money, conceit, control. I wonder why mutli-millionaires and billionaires aren't more charitable with the absurd profits they make on the backs of those who actually do the labor. Instead, they pocket those profits and too often pay starvation wages. These are the things I think about on days like this.

Last night at nine, Calvin had his third grand mal seizure in less than twenty-four hours. To stop the cluster I gave him Diastat—rectal Valium. It was the first time I had used it in months if not years. It has seemed to stop the seizures from advancing, but the real test will be whether he has more tonight. I don't know if Calvin is ill or if he is simply outgrowing his medication, or whether this worsening of clusters is an effect of eliminating his CBD oil recently. Like world torments, I don't question why my son suffers, at least not philosophically. As I said, nature is indifferent. But I would like to know the root of his weekly seizures, and I'll continue to search for ways to beat them into submission.

My thought this morning was to more seriously consider giving him the plant-based pharmaceutical CBD called Epidiolex. I've been following a Facebook page about the drug for months, noting its trends and side effects. It may be a last hope for Calvin considering he has failed ten anti-epileptic drugs. If we do decide to move forward with it, I'll likely put him on a fraction of the recommended starting dose. What I've noticed about CBD is that sometimes giving less is more effective and, like all drugs, too much can cause unwanted side effects including increased seizures.

Today my boy has been waking only for moments throughout the day, recovering from the assaults on his brain, and sleeping off the benzodiazepine. Though he is in a decent mood and seemingly content, I feel sorry for him. I've watched him seize thousands of times in his life. He sometimes turns gray-blue, bites his tongue and cheek till they bleed, may sometimes have vicious migraines and often appears woefully unsettled. Watching him suffer is punishing for me. Some folks believe that God punishes people who've sinned by doing things like "taking" their newborn babies, or rendering their children with afflictions, or causing natural disasters in liberal states, or allowing mass shootings in gay nightclubs. That is such bunk. The notion is so offensive, and I wonder how anyone could or would want to believe in a god that would behave that way.

Today, Calvin's buddy Mary came to watch him for a couple of hours in Michael's absence, so I was able to get outside with Smellie. The warmth of the sun offered respite amid a bitter thirty degrees. Some of the snow is melted and buds are beginning to swell on certain trees. I baked some chewy-crispy chocolate chip cookies for my friend who is now receiving Hospice care, though doing pretty well considering. In the garden, the greens of the Alberta spruce and the reds and purples of the small-leaf rhododendrons are gems right now. I wonder if we'll have an early spring. I'm hoping so. But you won't find me praying for it, because nature is indifferent. That's just the way She rolls.

rhetorical questions

While I sleep Calvin seizes, both for real and in my dreams. After a grand mal at two o'clock this morning, I dreamt of him seizing and chewing the inside of his cheek until it was like a wad of ground beef. Ninety minutes later, I woke up to him seizing again. My angst around his suffering made me think of a recent conversation.

Earlier this week I met up with a woman, perhaps a new friend, who not long ago arrived on my porch sharing information about Jehovah's Witnesses. During that visit, I had let her in to meet Calvin. This time, we sat across from each other at a bakery, snowflakes beginning to fall outdoors.

Over coffee, and while I nibbled a blueberry muffin, we discussed religion, science, God, Adam and Eve, evolution, heaven, hell, mankind, sex education, eternal life. I spoke of Calvin, and of his rough beginning. I asked her, in all seriousness, how she thought Noah had managed to collect Arctic animals such as polar bears, plus every living species of insect and animal—indeed multiple millions—into a 500-foot-long vessel, and then handle the rapid and exponential procreation of vermin and others, the colossal amount of shit they'd produce during a forty-day deluge, not to mention how he'd feed them. Without dismissing the existence of Noah, his ark or a major flood, I characterized the account and others in the Bible as folklore—stories written by man to help explain the unexplainable and perhaps to invoke the notion of God's wrath to maintain societal order.

Our conversation proved fascinating and respectful. I told her that I wasn't looking for answers to or explanations for life's messy situations, explaining my belief that nature simply runs its course. Though I don't entirely rule out the possibility of some kind of a divine force or creator, I don't believe in hell or Satan or angels, nor that Jesus is our Lord and Savior, though he sounds like someone I could hang with. After referencing other stories in Genesis, she described the Book of Revelations, saying God would one day make Calvin whole, make him into the normal boy I pined for in my most recent post.

Later, while taking a shower, I wondered what justification might be given as to why God would be waiting to make kids like Calvin healthy and whole. Why prolong Earth's miseries? I mean, if a merciful God exists, what's the holdup? Release the aid! We're fighting all kinds of battles down here! What has this alleged God got to prove or gain from withholding relief? He's not up for re-election. Or is this all some sick experiment? And as I watched the water spiral down the drain, I remembered what another friend had written to me recently:

If you could have seen the Florida skies at daybreak this morning, it would have given you pause to think about a Creator ... a mackerel sky that the sun lit up bright orange against a cerulean blue background. “The heavens declare the glory of the Lord, the skies proclaim the work of His hands ...”  (Psalm 19) 

As an integral part of this immense universe, I've seen a thousand blazing skies which astound and move me deeply. As I toweled myself off, I wondered how the majesty of nature's beauty is often declared as evidence of a divine creator, but the horrors of the world—famine, war, genocide, disease, poverty—despite infinite prayers calling for mercy, are not convincing proof of God's neglect or lack of presence.

Every day the impeachment trial, which I've been listening to intently, begins with the Senate chaplain's opening prayer. Monday, the chaplain prayed that God would lead the senators to do His will. What does that even mean? Will any outcome be proof of God's will? Is it God's will that children like Calvin suffer? Does God take sides in war and basketball? What makes one religion righteous and another counterfeit?

But I'm not looking for answers to these questions. They are rhetorical. I know what I believe in my heart, brain, bones and, if I have one, my soul. The sun rises and sets in infinite, glorious colors. The earth is quaking, drowning, burning as we speak. Human beings of all races and religions are good people just trying to survive. Some folks for whatever reason turn out to be corrupt, deceitful and threatening. Oceans and night skies glimmer endlessly. Nature can be unforgiving. Children are virtuous. Hatred is learned. Life is hard. People suffer needlessly. Prayers go unanswered. While I sleep, Calvin seizes. I'm not worthy of his misery.

Photo by Michael Kolster, 2015

on survival

On Saturday, I read an op-ed by a woman who had a third-trimester abortion. So many of the details she shared reminded me of my own pregnancy with Calvin—the fetal MRI, the countless ultrasounds, the wretched diagnosis, the empty spaces where brain matter was supposed to have formed but didn't. Just as the author experienced, a neurologist explained to me and Michael that Calvin would likely face developmental delays, might not crawl, walk or talk. What the doctor failed to mention, however, was that Calvin might be prone to having seizures.

I ruminated on the piece all weekend, even mentioning it to someone close to me. She asked me tenderly if, when I first knew of Calvin's brain abnormality, I ever considered having an abortion. She asked me, had I known of Calvin's troubles earlier in my pregnancy, if I would have had an abortion. She asked me, considering his seizures, insurmountable challenges and suffering, if I ever wished he hadn't survived. 

I did not consider having an abortion when I learned of Calvin's brain anomaly; my pregnancy was thirty-two weeks along. The thought never entered my mind, and no physician broached the topic. Had I known about Calvin's brain malformation earlier in my pregnancy, would I have had an abortion? I can't say for sure. Probably not. There were too many questions left unanswered for this optimist. As for my friend's third question about Calvin's survival, for weeks our boy struggled for his life. We were always pulling for him. He's here today. We love him. He's changed us in myriad ways. The kid has always been a fighter. Perhaps he teaches us about survival.

Having said that, in my very darkest most sleep-deprived hours, I do think about Calvin's mortality, sometimes even longing for deliverance for our child from his suffering, and from our strenuous, limiting, painful situation. I also worry about what will happen to him if he outlives us. Will people love and care for him? Will they keep him safe from harm? Will they be patient? Kind? Attentive? Tender? I think about how much easier life would be without having to take care of him—the constant vigil, the endless dirty diapers, the daily undertakings of a growing child who can do nothing without extraordinary help from others, the sleepless nights, the stress, the worry, the physical and emotional strain so taxing on my person. Then I imagine the enormous void he'd leave in my life, and I wonder, in that case, about my own survival.

reason, purpose, meaning

Thousands of acorns, some crushed. A wad of squashed gum under my sneakered foot. Red leaves with yellow spots and brown edges. A blanket of bronze needles. A pair of broken sunglasses. A dime. An unopened bottle of beer resting on a granite bench. Bird nest with plastic ribbon. Dead squirrel from Nellie's mouth. Plastic bag. Chapstick. Puddles and shards of glass in which I can see myself.

These are the things which, in recent days, have come across my path, or I across theirs; I'm unsure which is the truth. Were they put there for a reason by some divine hand, like some would say is true of everything else? Or did they land there randomly, awaiting others to assign them some purpose or meaning? I'd say the latter.

I remember a conversation with a sibling's in-law long ago. He told me that god put my son Calvin on this earth in his regrettable condition—legally blind, nonverbal, incontinent, cognitively and physically disabled, racked by uncontrolled seizures—so that I could learn something about myself. My face became hot. My heart began to pound. I shut that conversation down as hard as I could:

"I wager you'd feel differently if you had a child like Calvin and saw him suffer every day of his life."

Thankfully, the man shut up.

My son seizes weekly. Yesterday, someone sensitive and with insight, asked me tenderly if his seizures hurt him. I told her they likely did. The spasms cramp and rack his body. His heart races. His breathing shallows. His brain's neurons and his body's muscles march in gruesome unison. He often bites his cheek until it bleeds. I imagine viscous headaches plague him. The other kind of seizures seem to sometimes scare him. I see a petrified expression creep across his face. I've been told by someone with epilepsy that her seizures were terrifying and that she felt as if she were being choked to death. Is this the work of a merciful god? No, it's not. Am I worthy of my son's suffering? No, I'm not.

Yet acorns get eaten by squirrels about to get their necks snapped in the jaws of a dog. Gum gets stuck to sneakers and travels to distant places picking up all kinds of disgusting stuff. Autumn leaves get pressed into scrap books. Pine needles tamp down underfoot. The owners of broken sunglasses are imagined. Coins are passed to endless palms and pockets. Beer gets drunk. Bird nests get burned. Plastic bags go on to hold poopy diapers. Chapstick gets neglected there on the sidewalk. Puddles and shards of glass reflect my tired face, nearby trees and ever-changing skies above me. Some things are given meaning and purpose; others, not. Calvin inspires love and affection, makes those who meet him better people. But he, in his suffering, is no pawn of some so-called merciful god, and yet he gives me purpose, and yet his life is meaningful.

in case you didn't know

Epilepsy can kill. It kills our children, our parents, our grandparents and our siblings. It is not a benign disorder for which you take a pill and everything is okay.

Epilepsy affects over three million Americans of all ages, as many as 300,000 of whom are children under fifteen.
Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.

About 200,000 new cases of epilepsy occur each year and it is estimated that up to 50,000 people will die every year from epilepsy or seizure-related causes, such as drowning. These numbers are nearly identical to breast cancer and yet epilepsy is still an obscure disorder to most people. Epilepsy is stigmatized, misunderstood, feared, overlooked and grossly under-funded.

Those who have epilepsy and are lucky enough to have their seizures controlled by medication suffer drug side effects which can be debilitating and sometimes lethal. Side effects include dizziness, headache, nausea, poor coordination, visual disturbances, trouble with balance and gait, insomnia, drowsiness, confusion, abnormal thinking, fatigue, hyperactivity, agitation, aggression, depression and suicidal ideation, just to name a fraction.

Those who don't benefit from medication risk brain damage, cognitive decline, hospitalization, exorbitant medical bills and sudden death.

Quick facts:

• Epilepsy affects 65 million people worldwide.
• Epilepsy affects over three million Americans of all ages, just over one in 100 people. Over 300,000 school children through age 15 have epilepsy. Almost 500 new cases of epilepsy are diagnosed every day in the United States. 
• In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
• One in twenty-six Americans will develop epilepsy at some point in their lifetime. 
• Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.
• In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.
• The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal. 
• It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. 
• The mortality rate among people with epilepsy is two to three times higher than the general population, and the risk of sudden death is twenty-four times greater. 
• Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, intellectual disability, autism, Alzheimer’s disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes.
• There is a strong association between epilepsy and depression: more than one of every three persons with epilepsy will also be affected by depression, and people with a history of depression have a higher risk of developing epilepsy.
• Historically, epilepsy research has been grossly under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.
• For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence. 
• SUDEP: SUDDEN UNEXPECTED DEATH IN EPILEPSY FAQs

David Beauchard, illustration from his graphic novel, Epileptic

unease

Again, I lie awake hours before daybreak. The dark of night seems to magnify my angst. When for various reason I can't sleep, I worry about whether Calvin will seize. Under the covers, I flinch when Nellie yelps in her sleep. I fret about the list of things I need to get done that I don't seem to have the time to do, the things that have piled up during the five-and-a-half weeks that Calvin didn't go to school—sweeping, mopping, dusting (what's that?), writing, reading, researching, filing, calling. I lie in bed, my mind racing, pondering the troubles of the world: war, famine, genocide, waste, poverty, pollution, misogyny, racism, corruption. I think of the human impact on climate and the havoc it is wreaking on our gorgeous Earth. I consider refugees desperate to find better lives for themselves, whom the people of our town and nearby ones have graciously—and some begrudgingly—received.

The other night, after I heard the rain begin to fall, I laid there on the brink of exhaustion and yet buzzing, lamenting the plastic microbeads, bags and bottles choking the ocean, the single-use plastic caps and containers washing up on beaches, the straws and swizzlers and six-pack holders, the syringes, balloons and latex gloves—you name it—that sacred sea life is ingesting and strangling on as we dream. I pondered the tons of toxic materials being released into our rivers, air and seas, and the sleazy politicians who are making that more possible. I grieve the burning of the Amazonian rain forest, the flushing out of its creatures and native peoples. I consider the rabid appetite of greed.

Yes, I lay awake in a warm bed in an ample house having filled my belly with delicious food my husband cooked, thinking about Yemenee people starving to death, and Rohinga refugees being forced back to their tormentors, and hurricane victims having just lost loved ones, homes and belongings. I consider how effing lucky I am, and wish I had the means, like a handful do, to fund everything. I lament that, in this nation of abundance, our fellow humans still live under cardboard boxes or on cold sidewalks while billionaires and certain politicians continue to enrich themselves at the expense and exploitation of everyone else.

While scrolling through my photographs yesterday, feeling weary of the world and of all-things-Calvin, I came across some I'd taken at last year's Bowdoin student art show. The small, framed piece that hung on the far wall of a room where my husband taught a class called Art and Time, was titled, Receipt for a Sunday and the Things Carried There, by a talented and ambitious student, Blanche Froelich, class of 2019. Rereading it reminded me to be grateful, humble, thoughtful, and generous to others; none of us live life without our own struggles, big and small. And the night is not the only time we feel unease.

Detail, Receipt for a Sunday and the Things Carried There, by Blanche Froelich

hope, dread, want

The day began large. Having been the second one in a row of seven that Calvin didn't wake to a seizure, I felt some semblance of hope. But as the day wore on, hope became dread, and dread became want.

Around noon on Sunday, we made our way north to the Union Fair. The hour-plus drive felt long, winding through Maine's back roads where farmland sprouts double-wides and barns, dilapidated antique stores, tractors, graveyards, and at least one shop devoted to selling guns. I tried to stave off a bit of anxiety amid the unfamiliar surroundings so far from home, tried focusing instead on feeding Calvin and thwarting his incessant attempts to stare at the sun.

It was a hot day to attend a fair, but the cloud cover helped for a spell. A nice lady selling tickets from a kiosk let Calvin in for free after she saw him spastically flailing in the backseat of the car. From the get go, Calvin was stubborn when asked to walk, a repeat of the day before. He'd take a step or two before collapsing in our grasp, getting us nowhere. Thankfully, we brought his stroller.

The highlight of our day's adventure was a ride on the Ferris wheel. This was a first for Calvin, for us as parents, and one I'd dreamt of for years. Calvin wilted in the sun waiting to board, and during the wheel's five revolutions, he didn't seem to register much of anything. He squirmed and squinted exhibiting discomfort. While Michael held him in the shade, I took in a bit of my surrounding world. The sky proved spectacular—a mix of puffy white clouds and wispy ones met the horizon. Compared with the West, this small part of Maine, save some rolling hills, is flat, with nary a vista to take in. In this landscape with its tall white pines and oaks, it's easy to feel stuck. Needless to say, at fifty to one-hundred feet, I ate it up.

Because of Calvin, we cut our fair-time short. The drive south felt more relaxed, any apprehension now behind us. Though we were at the fairgrounds just over an hour, and though it was far from Calvin's best performance, we had, I think, accomplished something, and it felt good to be heading home. On the drive, however, Calvin became increasingly agitated and, at one point, he let out a bizarre screech. I knew this was a bad omen, causing me some dread.

Once home, Michael gave Calvin a bath while I took Nellie on a short walk. When I came back, I heard Calvin upstairs crying as if he were hurt. After his bath, our boy had devolved into what I've previously described as night terrors. Calvin was writhing and crying, stretching and recoiling, shrieking and moaning as if he were being tortured. Michael and I guessed he had a migraine, so I gave him an acetaminophen suppository. Lauren stopped by, came upstairs and gave us some much needed tenderness and moral support. I shared my belief that these episodes are latent benzodiazepine withdrawal side effects. I'd read that Stevie Nicks, having withdrawn from years of prescribed benzodiazepine use had said that her detox felt like somebody had opened up a door and pushed her into hell. This is how Calvin sounded and looked.

After twenty minutes, when the acetaminophen didn't seem to be helping, I gave Calvin his nighttime dose of homemade THCA cannabis oil, except this time I gave it to him rectally. Within five minutes he was sound asleep. Half an hour later he woke up enough for me to give him the rest of his nighttime cannabis oil and his Keppra. He slept peacefully the rest of the night.

Unlike most seizures, rarely do I see with any clarity these pain episodes coming. In the past they've been while he's asleep, leading me to think they are night terrors. Now I know they are not. Regardless, they are dreadful. In the moment, I want for nothing but for Calvin to be at peace, to be set free from the torture and misery consuming him. I want for him to feel serenity, no matter how brief. I want him to feel the calm of looking into a sky with tranquil clouds which touch the horizon. I want him to feel hope, not dread, not want.

the terror of decent people

The wind through the trees speaks to me, each leaf part of a collective voice, each a palm, each a map of sorts to a larger world. These living beings know what to do, know what freedom means. Seeds travel on breezes and in the mouths and bellies of birds. Trees put roots down in fertile soil. Geese and butterflies migrate legions of miles. Seas intermingle. Grasses cross natural, manufactured and imagined divides. Rivers breach levies. Clouds rain down quenching all creatures. Nature knows no boundaries. Why should we?

After Calvin's unexpected grand mal at dinner time Saturday night, after we wiped a stream of blood running down out of his mouth, I sat on a stool next to his bed and watched him breathe. I pondering the state of the nation we're in, where blood is shed in massacres which are happening with increasing frequency. Studying my boy's maturing face, I recalled what Frank Borman, Apollo 8 astronaut, said when feasting his eyes on blue Mother Earth from space:

When you're finally up at the moon looking back on earth, all those differences and nationalistic traits are pretty well going to blend, and you're going to get a concept that maybe this really is one world and why the hell can't we learn to live together like decent people.

—Frank Borman, Apollo 8, December 1968

And then, while bitterly lamenting racist despots and White supremacists and the atrocities they commit, I reflected on what the seventeenth-century Dutch physicist, mathematician and astronomer said:

How vast those Orbs must be, and how inconsiderable this Earth, the Theatre upon which all our mighty Designs, all our Navigations, and all our Wars are transacted, is when compared to them. A very fit consideration, and matter of Reflection, for those Kings and Princes who sacrifice the Lives of so many People, only to flatter their Ambition in being Masters of some pitiful corner of this small Spot.

—Christiaan Huygens, The Immense Distance Between the Sun and the Planets, 1698

And yet, on this small spot of glorious planet we share with nature and the rest of humanity, we have an epidemic of Right Wing, White Supremacist terrorism. It's motivated by the erroneous, bigoted and dangerous notion that ours is a White, Christian nation, and inspired by a reckless president bent on maligning People of Color meant  to rile up his base, pitching one struggling human against another while he tweets indignities from his gilded toilet seat.

I think of how these hateful people speak of and treat others who are their mirror image, save what's in their hearts and the pigment in their skin. I hear and read deplorable rhetoric about refugees spewing from fanatical mouths, words like "alien," "animal," "thug," "infestation"—no way to describe decent, loving, striving human beings. Where has our collective humanity gone? It is being poisoned by a fearmonging "leader," a tyrant, liar and thief who preys upon the ignorance and anxiety of people who feel they need someone else to blame.

How foolish to believe that anyone on this hunk of land, one which was stolen from its natives in a heinous genocide, can somehow feel entitled to decide who has the right to call it home.

Yesterday, I watched a video of a Black American with long dreadlocks being harassed by a White police officer in the front yard of his own home. It was a case of mistaken identity. Watching and listening, I heard the anger in the man's voice and the fear in his wife's. History has proven that any false move by the Black man could've resulted in the cop gunning him down. I've seen so many of these kinds of videos I've lost count—White cops shooting decent Black people. White cops and civilians harassing Black men in cars. Black men on sidewalks. Black men picking up garbage outside of their apartment building. Black boys playing in parks. Black men, women and children going to church, having a bbq, entering their own homes, walking across their college campus, sleeping in their dorm’s common room, waiting for a subway, mowing their lawn, entering their apartment building, going home from a pool party, driving to work, crossing a street, waiting for a friend in a Starbuck’s, shopping at Walmart, walking home.

And if you haven't read or seen James Baldwin's, If Beale Street Could Talk, you should; in its words and scenes, you will feel the terror of decent Back people.

These White Nationalist racists have launched an assault on the rest of America, on decent people's freedom to move and to safely exist in our personal and public spaces. They are driven by the fear of being replaced by people who've born the brunt of centuries of White state-sanctioned slavery, family separation, rape, forced labor, harassment, racial profiling, police violence, arrest, incarceration, exploitation, discrimination, marginalization, segregation, disenfranchisement, and demonization.

But as sure as the trees speak to me through the whisper of wind, as sure as the tides flow and recede, the world is evolving, its natural and imagined borders forever changing. Its people put down roots where the ground is most forgiving. We cross divides in search of liberty. We intermingle like the seas. We suffer and triumph and love and bleed the same. Each of us is a leaf on the same tree. We have room enough to shelter one another, and to let each other breathe.

Carolyn Cole / Los Angeles Times

the trouble with keppra

May has been another rough month; Calvin has suffered eight grand mal seizures, three of them within thirty hours, though just two focal (partial) seizures. In April he had just one grand mal, though ten focal seizures. A recent EEG captured one of this month's grand mal seizures, plus a number of focal and generalized "discharges," which were explained to me by Calvin's neurologist as possible precursor to seizures which never emerged. Other suspicious behaviors, however, such as space-outs, finger stimming, flushed cheeks, shivers and jerks, rapid breathing, eye pressing, tummy grumbles, ear rubbing, insomnia with repetitive humming, clammy hands, rapid, pounding heartbeat and other panicky behaviors were reportedly not seizure related.

This news made me wonder if Calvin's suspicious behaviors are drug related, including the uptick in seizures after having increased his one pharmaceutical, Keppra, in early March to account for weight gain. So, in my ceaseless sleuthing to unearth ways to reduce Calvin's seizures and improve his quality of life, I went back to the Internet to study—for the umpteenth time—Keppra's side effects. I read what I had long suspected, that seizures can be a side effect of Keppra. In understanding that most side effects are dose related, and with the knowledge that Calvin has always been on an extremely high dose of Keppra (as high as 86 mgs per kg compared with the mean therapeutic dose of 44 mgs per kg) we decided to decrease his dose by ten percent (from 75 to 66 mgs per kg) to see if the side effects he seems to suffer might abate. It is too early to tell for sure, though his behavior and sleep do appear, generally, to be slightly improved.

Below is a list of Keppra side effects taken from the website drugs.com. I have highlighted the ones I sense Calvin might be suffering. Some of the side effects, such as joint, bone and muscle pain, I can never know with certainty; since Calvin can't speak, I can only presume.

I should note that for some people, like any antiepileptic drug, Keppra works wonders. And, sadly, all antiepileptic drugs have scores of side effects.

In Summary:

Common side effects of Keppra include: infection, neurosis, drowsiness, asthenia, headache, nasopharyngitis, nervousness, abnormal behavior, aggressive behavior, agitation, anxiety, apathy, depersonalization, depression, fatigue, hostility, hyperkinetic muscle activity, personality disorder, emotional lability, irritability, laceration, and mood changes. Other side effects include: tonic clonic epilepsy, dizziness, vertigo, decreased neutrophils, depressed mood, neck pain, and pain. See below for a comprehensive list of adverse effects.

More Common:

Aggressive or angry
anxiety
change in personality
chills
cough or hoarseness
crying
depersonalization
diarrhea
dry mouth
euphoria
fever
general feeling of discomfort or illness
hallucination
headache
hyperventilation
irregular heartbeats
irritability
joint pain
loss of appetite
lower back or side pain
mental depression
muscle aches and pains
nausea
painful or difficult urinationparanoia
quick to react or overreact emotionally
rapidly changing moods
restlessness
shaking
shivering
shortness of breath
sleepiness or unusual drowsiness
sore throat
stuffy or runny nose
sweating
trouble sleeping
unusual tiredness or weakness
vomiting

Less Common:

bloody nose
burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings
clumsiness or unsteadiness
discouragement
dizziness or lightheadedness
double vision
earache
feeling of constant movement of self or surroundings
feeling sad or empty
increase in body movements
loss of bladder control
loss of memory
mood or mental changes
outburst of anger
pain or tenderness around the eyes and cheekbones
problems with memory
redness or swelling in the ear
seizures
sensation of spinning
shakiness and unsteady walk
shakiness in the legs, arms, hands, or feet
tightness of the chest
tiredness
trembling or shaking of the hands or feet
trouble concentrating
unsteadiness, trembling, or other problems with muscle control or coordination

Incidence Not Known:

Attempts at killing oneself
being forgetful
bleeding gums
blistering, peeling, or loosening of the skin
bloating
blood in the urine or stools
bloody, black, or tarry stools
blurred vision
changes in vision
chest pain
constipation
dark urine
difficulty with moving
fast heartbeat
fever with or without chills
general feeling of tiredness or weakness
high fever
increase in body movements
indigestion
itching
light-colored stools
muscle pains or stiffness
painful or difficult urination
pains in the stomach, side, or abdomen, possibly radiating to the back
pale skin
pinpoint red spots on the skin
red skin lesions, often with a purple center
red, irritated eyes
sores, ulcers, or white spots on the lips or in the mouth
stomach pain, continuing
swollen glands
swollen joints
thoughts or attempts at killing oneself
trouble with balance
twitching, twisting, or uncontrolled repetitive movements of the tongue, lips, face, arms, or legs
uncontrolled jerking or twisting movements of the hands, arms, or legs
uncontrolled movements of the lips, tongue, or cheeks
unexplained bleeding or bruising
unusual bleeding or bruising
upper right abdominal or stomach pain
weight loss
yellow eyes or skin

General:

The more commonly reported adverse reactions in children have included fatigue, aggression, nasal congestion, decreased appetite, and irritability.

Nervous system:

Very common (10% or more): Headache (14%), somnolence (14%)
Common (1% to 10%): Dizziness, ataxia, vertigo, paresthesia, coordination difficulties
Postmarketing reports: Choreoathetosis, dyskinesia

Psychiatric:

Very Common (10% or more): Non-psychotic behavioral symptoms (up to 38%), psychotic symptoms (up to 17%)
Common (1% to 10%): Depression, nervousness, amnesia, anxiety, hostility, emotional lability, irritability, mood swings, hypersomnia, insomnia, apathy, tearfulness, negativism
Postmarketing reports: Panic attack

In studies, non-psychotic behavioral symptoms (reported as aggression, agitation, anger, anxiety, apathy, depersonalization, depression, emotional lability, hostility, hyperkinesias, irritability, nervousness, neurosis, and personality disorder) were reported in 38% of pediatric patients aged 4 to 16 years compared to 19% in placebo patients. Dose reduction or discontinuation due to behavioral symptoms occurred in 11% of pediatric patients.

Hematologic:

In pediatric patients 4 to 16 years old, mean decreases in WBC and neutrophils were 0.4 x 10(9)/L and 0.3 x 10(9)/L, respectively, compared to small increases in placebo patients. Mean relative lymphocyte counts increased by 1.7% in patients receiving this drug (placebo=decrease of 4%).
Common (1% to 10%): Decreased white blood cell count (WBC), decreased neutrophil count, increased lymphocyte counts, higher eosinophil counts
Frequency not reported: Decreases in white blood cell, neutrophil, and red blood cell counts; decreased in hemoglobin and hematocrit; increases in eosinophil counts
Postmarketing reports: Pancytopenia (with bone marrow suppression reported in some cases), thrombocytopenia, agranulocytosis

Hypersensitivity:

Postmarketing reports: Anaphylaxis

Dermatologic:

Alopecia reported with this drug resolved with discontinuation of therapy in most cases.
Frequency not reported: Stevens-Johnson syndrome (SJS), toxic epidermal necrolysis (TEN)
Postmarketing reports: Erythema multiforme, alopecia, angioedema

Other:

Very common (10% or more): Asthenia (15%), fatigue (10%)
Common (1% to 10%): Pain, vertigo

Respiratory:

Common (1% to 10%): Pharyngitis, rhinitis, increased cough, sinusitis

Gastrointestinal:

Common (1% to 10%): Diarrhea, gastroenteritis, constipation
Uncommon (0.1% to 1%): Nausea
Postmarketing reports: Pancreatitis

Ocular:

Common (1% to 10%): Diplopia

Hepatic:

Postmarketing reports: Abnormal liver function tests, hepatic failure, hepatitis

Musculoskeletal:

Common (1% to 10%): Neck pain
Postmarketing reports: Muscular weakness

Immunologic:

Very common (10% or more): Infection (13%)
Common (1% to 10%): Influenza
Postmarketing reports: Drug reaction with eosinophilia and systemic symptoms (DRESS).

Metabolic:

Common (1% to 10%): Anorexia
Postmarketing reports: Weight loss, hyponatremia

Cardiovascular:

Very common (10% or more): Increased diastolic blood pressure.

Renal:

Postmarketing reports: Acute kidney injury

Photo by Michael Kolster