5.14.2019

hell is an ambulatory eeg

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

5.13.2019

gratitude and sorrow

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

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

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

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

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

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

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

Me and Octavio

5.09.2019

love hurts

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

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

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

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

5.08.2019

know what you don't know (SUDEP)

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

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


             

5.04.2019

treading water

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

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

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

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

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

Photo by Lisa Kolster

5.02.2019

counting april

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

4.28.2019

fourth morning

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

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

Photo by Michael Kolster