helicopter mama

I'm a helicopter mama, hovering over the natural disaster that is my non-verbal, incontinent, legally blind, autistic, cognitively and physically disabled, chronically ill son. Regular electric storms wreak havoc inside his skull causing him to writhe, twitch and convulse. Including this morning's, he's had nine grand mals this month. A recent electroencephalogram revealed brief, fifth-of-a-second epileptic discharges (not considered bona fide seizures) occurring—at their most frequent, during sleep—once or twice every ten seconds or so.

I'm a helicopter mama for which I sincerely apologize to no one. I know my son far better than anyone. He's on my radar all day and all night long—no further than arm's reach, mind's eye or earshot. I know when he is too warm, too cold, when he's having, just had, or needs a poop, even if he's not in the room. I know when he's apt to wet through, when he's hurting, feverish or seizing, mostly when others don't. On days when he's most vulnerable—in the wake of or lead-up to seizures—I know when a bath is likely too long or cool, or a walk in the sun with wind is too cold. Exposure to the elements can sometimes be stressful for kids like him. Because Calvin can't speak, I've had to become adept at walking in his shoes. I know when he's headed for a seizure hours before it occurs, can sense its omen's and feel in my gut the weight of possible triggers. And yet I find myself biting my lip, reluctant, though failing, to hover too much over others caring for him. Though I don't want to be, I'm good at stepping on toes.

Some say, you have to trust us. I respond, trust is something to be earned. Others say, I love your boy, then go on to verily neglect my son.

As other helicopter mamas of kids like mine will confirm, some folks—whether with empathy, ignorance, conceit, contempt or concern—make attempts to save us. We are told to relax, told not to worry, asked if we are tired (hahahaha!) and told to get some rest. We are told not to get upset in front of our kids lest our outward stress set off a fit. This unsought advice, though likely sincere but perhaps—even if subconsciously—self-serving, brings to mind a favorite quote from a song by Gang of Four:

Save me from the people who would save me from myself.

The rest of the lyric, which is deliciously irreverent and hilarious, but which I rarely quote because it it is also rude, goes:

They've got muscles for brains.*

Something helicopter mamas also hear often is, Everything will be fine.

One dear friend genuinely put it this way:

Calvin is not going to die (anytime soon) ... or maybe he will.

She did not sugarcoat. She did not dismiss. She spoke what I know to be the truth, which in a strange way gave me a sense of calm, knowing in that not-too-unlikely, worst-case scenario I'd have done everything humanly possible to keep Calvin safe. As a helicopter mama, I'd have done my very best.

*Yesterday I took this line out for fear it offended, but then I added it back in for full transparency and accountability, noting what I hadn't originally, which is that it is rude.

Photo by Michael Kolster

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

vigil strange i kept on the field one night

Every Memorial day I post this Walt Whitman poem which evokes images of war, death, oppression, love, parenting and gratitude. Every time I read it, I'm struck by the words, "boy of responding kisses." I think of my Calvin, who is that boy, then wonder what it must be like for parents who lose their children to war or other atrocities, who hold vigil for their children, never again on earth responding.

Vigil strange I kept on the field one night;
When you my son and my comrade dropt at my side that day,
One look I but gave which your dear eyes return'd with a look I shall never forget,
One touch of your hand to mine O boy, reach'd up as you lay on the ground,
Then onward I sped in the battle, the even-contested battle,
Till late in the night reliev'd to the place at last again I made my way,
Found you in death so cold dear comrade, found your body son of responding kisses,
(never again on earth responding,)
Bared your face in the starlight, curious the scene, cool blew the moderate night-wind,
Long there and then in vigil I stood, dimly around me the battle-field spreading,
Vigil wondrous and vigil sweet there in the fragrant silent night,
But not a tear fell, not even a long-drawn sigh, long, long I gazed,
Then on the earth partially reclining sat by your side leaning my chin in my hands,
Passing sweet hours, immortal and mystic hours with you dearest comrade—not a tear,
not a word,
Vigil of silence, love and death, vigil for you my son and my soldier,
As onward silently stars aloft, eastward new ones upward stole,
Vigil final for you brave boy, (I could not save you, swift was your death,
I faithfully loved you and cared for you living, I think we shall surely meet again,)
Till at latest lingering of the night, indeed just as the dawn appear'd,
My comrade I wrapt in his blanket, envelop'd well his form,
Folded the blanket well, tucking it carefully over head and carefully under feet,
And there and then and bathed by the rising sun, my son in his grave, in his rude-dug
grave I deposited,
Ending my vigil strange with that, vigil of night and battle-field dim,
Vigil for boy of responding kisses, (never again on earth responding,)
Vigil for comrade swiftly slain, vigil I never forget, how as day brighten'd,
I rose from the chill ground and folded my soldier well in his blanket,
And buried him where he fell. 

—Walt Whitman

Photo by Macauley Lord

indiscretion

I'd been up since before dawn—again—the fullish moon still pinned in the inky sky. My fifteen-year-old son Calvin had had a grand mal seizure earlier, prompting me to crawl into bed next to him to ensure he kept breathing in it's wake.

Later, when I arrived at the Jr. high for a meeting about Calvin's upcoming transition to high school, I was sorely feeling the lack of sleep from consecutive nights—weeks, months, years—of not having gotten enough. I pressed the school's secure-entry button, and could see through the glass doors that the folks at the front desk were busy attending to others. To my right, a man and his son exited, so I snuck in through the open door. The man called me back, insisting that I couldn't enter the school without approval. Despite being visibly irritated at his request, I understood it well and knew I'd misstepped, so I complied, exiting the school then crabbily smacking the entry button again.

"You got a problem with that?" The man said to the back of my head as I waited to be buzzed in. Exhausted and vexed, I chose to ignore him rather than get into an argument, especially in front of his kid. Besides, I did not feel compelled to answer him.

The secretary buzzed me in and I walked to the front desk to sign in as a visitor. I sensed the man had followed me back inside. (I wonder, had he waited and been buzzed back in, or had he gone in the door right behind me?) Curious.

"Ma'am, is this lady giving you trouble?" the man asked the secretary. (He could see that I was not.)

"No, not at all," she said.

"Because she gave me some attitude outside," he added.

"I did what you told me to do," I replied, spinning on red cowboy boots to face him.

"You ignored me," he said.

"I can ignore anyone I feel like ignoring," I replied.

"When a law enforcement officer speaks to you, you respond," he retorted, with more than a hint of conceit.

Only then did I notice his stiff khaki uniform, searching it for a recognizable badge or pin. Flustered, I couldn't see past the smug look on his face, which was middle-aged, slightly doughy and white, save a faint five o'clock shadow.

Seemingly peeved with my protest, he threatened to call a school resource officer—for what, I don't know. I'm not sure what he was trying to prove.

Had I more energy, I would have questioned his eagerness to hound me despite having followed his initial request. Had I more sleep, perhaps I might have thought it a good idea to call a school resource officer to question his bad attitude and harassment of me. Had I more patience and clarity, maybe I would have challenged his decision to intensify what had become—since my exiting and proper re-entry of the school—a non-situation. Lacking my usual moxie, I told him I had had a rough day with my disabled kid. Upon hearing this, he turned around and left.

I was fuming—heart pounding, nerves twitching, cussing under my breath at the (bleep) who'd just left. I asked the secretary about the man's assertion he was law enforcement; she said his uniform read Marine Patrol. I laughed. What is it with these guys?

As the man got into his ubiquitous, ridiculously-big, black pickup, his son buckling himself into the passenger seat grinning at whatever his dad was saying, I couldn't help but mock them with sleep-deprived contempt.

In the school meeting I then attended, there were reasonable people, compassionate people, intelligent people—a stark contrast, it seemed, to the man who just hassled a woman who did exactly what he asked, a man whose pride was hurt because that woman then ignored him. I wondered if he would have treated my husband with such disrespect. I wondered what he told his son about the incident. I had no doubt he had painted himself as the BMOC. I shuddered knowing the son witnessed his father's badgering, then wondered if his kid is a bully. I wondered what the school's officials would think of such a situation. I remembered my own indiscretion when Calvin suffered a seizure at school one day.

I thought further about Calvin and pondered the bullying he'd likely get if he were a little more capable of mainstreaming, if he could speak and understand his peers. I wondered what provokes some law enforcement officials to agitate and escalate so unnecessarily. I wondered if he'd had a gun on his hip. I wondered what might've happened if I'd been a Black man, woman or kid. I remembered what my brother Steve, a twenty-five-year Tacoma Police Department veteran, had said about some officers' sorry lack of experience and discretion when handling prickly situations. I thought about Sandra Bland, Eric Garner, Philando Castille, Oscar Grant and Tamir Rice. I thought about all the autistic boys and men tazed, shot and choked because of law enforcement indiscretion.

In the end, I felt sorry for the Marine Patrol dad who came off like a rookie trying to pick a schoolyard fight. I figured he might be unhappy in his job, down on his luck, having trouble with his own family. Maybe he was sleep deprived himself. Perhaps he'd been bullied as a little kid and was eager to take it out on someone who he saw as somehow subordinate. But like doctors, these law enforcement officials are not our superiors. They are at best our equals and, in truth, are here to serve and protect, not to harass. Like the rest of us, they should know better when to submit.

coming home

I was going to write about hiking from Penn Station to Rockefeller Center and into Central Park, then partway back, tugging my mini crimson roller bag over sidewalks and cobblestones. I was going to describe imbibing wine and nibbling exquisite fingerling potatoes at the Tavern on the Green patio bar with Jaimie, both of us dreaming of all that was and could be. I was going to gush over my lovely and generous hosts, Antoinette, Leo and Ivano Pulito, and the stellar meals I enjoyed at their Tribeca restaurant, Petrarca—melt-in-your-mouth eggplant Parmesan, potato gnocchi with pesto, creamy burrata, ricotta gnocchi scattered with shavings of summer truffles, Aperol and Prosecco Spritz, vino and cappuccino. If you live in Manhattan, you must dine there; tell them I sent you.

I was going to detail finally meeting a mutual friend of our young beloved who took his life last summer, mention holding her hand and weeping as we grieved and shared stories of him, our lost and sorely-missed brother. Thank you Meredith.

I was going to write about rooftop bars, boutique clothes, and enormous gourmet Italian food stores, skyscrapers, ambulances, lovely spring weather, spent petals falling like snow, and sudden downpours. I was going to tell about boxer puppies and sassy cats, cousins and sons, dear old homies from my Levi's days, and tweenage baseball games in Brooklyn's Prospect Park. I was going to rhapsodize about a sweet, thoughtful, brown-eyed eleven-year-old boy who shared his parents, pets and home with me, and who made me a perfectly strong coffee with cream, and a sublime strawberrry-banana-walnut breakfast salad with cinnamon sugar and Greek yogurt. I was going to tell of subways and schnitzel, annoyingly boisterous drunken white bros, and all the sights, sounds and aromas which make up splendid New York and its boroughs.

Instead, I feel compelled to tell you about the rare way Calvin greeted me when I came home from my long weekend away. My non-verbal, epileptic, autistic, incontinent, legally blind fifteen-year-old boy had spiraled into his agitated late-afternoon "ooh-oohs," feverishly spinning on the floor while working his arms, hands and fingers into a frenzy. I swept him up into my lap on the green couch and, to my delight and surprise, he hugged me tighter than I can remember. We remained in each other's arms for what seemed like a part of forever. Michael and Mary looked on in some amazement at his prolonged and calm embracing. I rubbed Calvin's back and told him how much I missed him. At least twice he kissed my nose—his mouth slightly open—then smiled when I tickled and smooched his neck, and told him that I loved him. Perhaps he knew—even if just viscerally—I had been gone for several days and now was home.

One World Trade Center (Freedom Tower) as seen from my host's back patio.

hell is an ambulatory eeg

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

gratitude and sorrow

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

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

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

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

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

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

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

Me and Octavio

love hurts

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

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

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

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

know what you don't know (SUDEP)

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

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


             

treading water

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

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

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

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

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

Photo by Lisa Kolster

counting april

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