underwater

If only I could breathe under water I'd dive in and drink the liquid like sky, stay under for a spell drenching myself in the cool dark spaces that lurk at my feet. Then, I'd ride the thermals in a deadman's float, my fingers and toes trailing through the reeds and silt making marks like claws.

Underwater I'd forget about my son's seizures, his screaming spells, our sleepless nights, my exhaustion, worry, angst, dread, fear, my despair. Underwater I'd drift alongside smooth wooden boughs, and let myself get caught in beautiful eddies, but only for a while. Somehow, there'd be music down there with me, marimba for sure and perhaps velvety brass and some strings, happily pinging away as I pass over rocks and between sunken trees that look to me like ghosts or skeletons or both. And from that music I'd cry invisible tears.

Perhaps I'd come face to face with a catfish or an eel. Maybe we'd kiss each other in solidarity of life's hardships, hers from the hunger and the hook, mine from the messed-up brains of my son and my mother, both of which tug and tear at me until I'm raw.

I read this to my husband and he tells me how strange it is that when he took this photo he watched a large fish serpentine its way against the current up the channel. I'm swimming upstream, I think, and have been for a while. Good thing I'm a strong swimmer, the water being my second home. I know when to fight it and I know when to give in and simply let it take me under, if only for a spell.

Rio Grande, photo by Michael Kolster

thanks y'all

Yesterday, he came through the mudroom door a month after I’d said a very tearful goodbye to him. He’s lost several pounds having survived a string of long, hard days photographing the Los Angeles River, the Rio Grande, The Hoover Dam and Lake Mead sustained in great part by a modest diet—not so much by design as by necessity—of avocado, cheese, sardines, bread and raman. He looks like he did when I first met him seventeen years ago, not an ounce of body fat on him. Complimenting him on his wiry physique, I joked that he resembles Jesus, at least the European version of the man. We laughed.

As part of his Guggenheim Fellowship, my husband Michael drove cross-country and back in a rental van packed with 220 sheets of spanking clean 8 x 10 glass, several jars of syrupy collodion and silver nitrate, gloves with which to handle the glass and chemicals, several gallon jugs of distilled water, trays and tanks and graduated cylinders, one dark box and its stand, one dark cloth, two large-format cameras, at least one tripod, a handcart and several homemade wooden cases in which to hold his glass plates after exposing, developing and fixing them.

During his trip he called me twice daily to tell me how many plates he’d shot, how long he’d sat in traffic, how tired he was, how great the World Series was, how nice his hosts were and how ready he was to come home.

Calvin, Nellie and I stayed home, but mostly not alone. A legion of friends and family came out to help me. Seti flew here from LA on a 24-hour trip from hell, and since I couldn't, Macauley picked her up at the jetport at eleven p.m. bearing a warm winter jacket and a burger for a gal he'd never met. A few days later he stepped in again to take my sick car to the mechanic, then took Seti back to the airport when she left. A week later my mother-in-law lovingly descended, but from Florida. Regrettably, both women witnessed Calvin have a bad seizure in the middle of the night. Both helped me manage it. Later, my sister drove up from Connecticut for a couple of wonderful days and nights. All of them gave me an abundance of love and support, helped make me smile and laugh.

Arnd, who traveled from Berlin, though not expressly to help me, stayed four nights and, in true form, tried fattening me up on loads of breads and pastries from Standard Bakery. Nick came by—twice—and thoroughly entertained me with his ever-quick wit; he knows me so well. Ann, Kevin, Russ and Susan brought dinner one night, helping me put a dent into my lonesomeness. Ann returned a few days later bearing gingercake and whipped cream for breakfast! Jen and Madeleine checked in, hung out and slept over. Maura, Matt and Lauren looked in on me several times and stayed at least short enough for hug and/or a drink and long enough for dinner. Mary walked Nellie when Calvin was recovering, Connie did some of my shopping and my new friend Sarah treated me to coffee. Our good-ole homies Luke, Sarah and Matt sent my sleep-deprived blues packing when they stopped by for a spell last Sunday night and turned my kitchen into an impromptu party. Lorry brought me some donuts, hugs, laughs and a smile. Barbara kept care of Calvin several evenings so I could saddle up to the bar and dine out with a few of my pals.

They cooked and cleaned and walked the dog. They brought me bourbon and pizza, homemade tamales and lentils and called on me often to ask if there was anything I needed. Without them, I’d have been hard-pressed to have made it a manless month without totally losing it to sleep deprivation, loneliness, monotony or Calvin's mania. Aviva, Kim, Lucretia, Teresa and Viv, I'll be sure to catch up with you soon.

Thanks y'all, from both me and Michael. Here's just one of hundreds he was able to take because you were here helping me cope:

click on photo to enlarge

Rio Grande, photo by Michal Kolster

manna from heaven

Around me all the colors burn bronze and copper except the evergreens, which are as deep and verdant as they were back in spring. Fading splotches of blood-crimson spatter smoldering stands of trees that edge the fields. When a gust comes up, dead leaves fall like huge yellow snowflakes carpeting the ground in a crispy layer of gold. I stand in the center of a lea where the wind, not quite cold not quite warm, fingers through my hair.

Around me, the young athletes with their knee-high socks and neon jerseys, jockey balls across the turf with great skill. I think of my son, now ten, just beginning to walk well enough for me to, at times, let go of his hand, his harness. Then I think of my mother whose balance is becoming as precarious as Calvin’s once was not long ago and I imagine the crisscrossing of their paths, hers dwindling ... and his? I remember as a youth being spry and sure and thinking I could do almost anything—climb trees, scale mountains, ski black diamond, tackle brutal waves, jump off of cliffs—and that my body would oblige. For some, like my son and my mother, every step is a risk and, if they were cognizant, perhaps a leap of faith.

Last night was another rough one, Calvin rousing every hour after three-thirty. I wasn't sure if his awakenings were little seizures, partly because he’d turn and wrap his arms around my neck before falling back to sleep, which he doesn't usually do after seizures.

When I put him on the bus I told Cindie, his driver, that he had had a good morning and that I had started him on a second kind of cannabis oil, one high in cannabidiol (CBD).

“I don’t even know how much to give him,” I told her.
“Try anything,” she said compassionately, then shut the doors and took off while my boy patted the window as if waving to me.
"Bye Calvin, I love you!" I shouted, as I do every morning.

I’m starting Calvin's new cannabis oil at a microdose, far less than all but one person have recommended. Less is more, I think to myself, and I remember all of the pharmaceutical drugs we've thrown at this little boy of ours and how I've always been so cautious, dubious and reluctant to increase doses too quickly or too much at once, even in the face of a doctor's recommendation. I know that this tack I’m taking by giving my son homemade cannabis oils to control his seizures is a leap of faith to some extent. But, like when I was young, I feel confident, sanguine, and I try not to be deterred by fear. Besides, what could be worse than the drugs he's already tried? Nada.

Around me acorns drop from the trees and I crush them beneath the heal of my boot. With each cracking husk I release a little anger, angst, frustration, which I feel bubbling beneath the surface of my own shell. Above me the clouds roll in displacing the clear blue and I wish it would just rain, wish it’d pour, and if it did I think I’d stand right out in it and let it drench me to the bone. I just want a new start, want to erase the years of damage that the seizures and the drugs have done to my son, wish I could know what he would have been like without them.

Maybe this cannabis is like a fresh start. Manna from heaven, I think, even though I don’t believe in heaven beyond the one I see in the night sky, in the amber, carmine and russet leaves falling around me, in my son’s blue eyes and the feeling of his fingers at the back of my neck, like the wind tussling my hair.

photo by Michael Kolster

batting a thousand

Unfortunately, of late I’ve been batting a thousand. As I expected, Calvin had a seizure after he went to bed last night. At three-thirty I awoke to his telltale raspy, constricted breathing, his arms and legs convulsing. I leaned into his bed and kissed him and told him it was going to be okay, then I ran downstairs to get his cannabis, both kinds. With a one-milliliter syringe, I drew up 0.25 mls of the new CBD oil that I'd made last night and 0.75 mls of my THCa cannabis oil. I crawled in next to Calvin and slowly syringed the oil inside his cheek, trying carefully to keep it from dripping out the side of his mouth. He struggled some, so I straddled him, cradled his head and embraced him for a few minutes until it seemed as though he was falling back to sleep.

I laid awake a couple of hours in the dim light coming from my bedroom; I'd left a light on so I could easily see Calvin's face. Just after five he startled, and by his chewing and swallowing sounds I knew he was having a second seizure, though this one not as bad. I gave him another 0.25 mls CBD oil. The seizure lingered then looked as if it wanted to become convulsive, so I grabbed the rectal Valium, which we’ve used just once in seven years, and I reluctantly prepared to give it to him just as the seizure was ending. Relieved, I put the cap back on the vial and set it on his dresser. Calvin woke an hour and a half later, but luckily not to a third seizure. I never went back to sleep.

I’m cautiously optimistic that this CBD (cannabidiol) oil, which is proving to be helpful to many children with refractory epilepsy, will also help Calvin. The THCa oil has already allowed him to go thirty to sixty-plus days without a daytime seizure while gradually weaning him off of over 50% of his benzodiazepine, clobazam. So, we’ll try giving him both oils since my gut and my research tells me that isolating a single cannabinoid might have a limited effect.

What seems clear is that we have to get Calvin off of his benzodiazepine. He probably isn’t at a therapeutic level anymore and his number of seizures, at least during a protracted withdrawal, have ticked up a notch. But, I’m leaving it alone while I titrate the CBD oil. One thing at a time.

In the meantime, it’s fifty degrees, sunny and gorgeous outside. I’m inside wearing sweatpants and a scowl on my face watching Calvin like a hawk and having to endure a replay of yesterday’s mania, which makes me wonder if we might not yet be out of the woods. The dishes are piling up, my hair is filthy, I’ve been awake since three-thirty and I have to deal with this kid by myself for the next three hours until he goes to bed. Quick, call the waaaambulance and make sure they bring a bottle of bourbon and a straight jacket. Make that two. Of each.

cbd here we come

Calvin is ramping up to a seizure tonight or tomorrow night. I hope this CBD honey, which I got from the wonderful people at our local dispensary, dissolves in the oil quick-like. He's a frigging lunatic as I write this—wound tight as an effing drum—and it's only day seven ... again. Ugh. Double Ugh. Figures, it's two days since the full moon.

Update: Calvin got some tonight!

somber day

Early this morning I woke in a groggy haze, still sleep deprived and worried more than usual about my son Calvin. He hasn’t been himself this past week having suffered a spate of seizures on Halloween night, a listless Saturday spent vomiting and several hours writhing in terrible pain the other night. None of it I seem to understand or have much control over. So, when I eventually sat down at my computer with a cup of strong coffee and read the news about yesterday's elections, I really felt ill.

Some of my friends are conservative, middle-aged or older white guys—good guys—but ask me if I like the fact that our diverse nation is mostly governed by them—our governors, senators and House representatives—and I'd say, hell no. We'd do so much better with a more diverse congress.

It is hard for me not to think about Calvin during political elections, to imagine what kind of young man he might grow up to be if things were different, if he hadn’t been born missing a hank of white matter in his brain, if he’d been able to talk, read, write and reason and all that goes with that, including being able to vote.

I like to imagine that he’d be no racist, no bigot, no sexist. He wouldn’t say appalling things about rape or call women whores like some die-hard politicians and talk radio hosts seem to enjoy doing. He wouldn’t be a fear monger or a hate monger. He wouldn’t be hell bent on restricting women’s reproductive rights under the “pro-life” banner then turn around and defend capital punishment. He’d support equal pay for women and the right of everyone to marry who they love. He’d understand and acknowledge his white male privilege and he'd give others the benefit of the doubt. He’d back common sense gun control policies which hurt no one and he'd fly in the face of fanatics who'd portray such as an effort to take people's gun rights away. He’d decry attempts to disenfranchise our poor, our young, our elderly, minority and female voters by condemning those bogus voter ID laws constructed on phony claims. He wouldn't believe that corporations are people and that money is free speech. He wouldn't hold the poor in contempt while voting to subsidize huge corporations and the likes of the enormously profitable NFL. We’d raise our son to be fair, compassionate and charitable. I truly believe he'd be all that.

After reading the dismal headlines I lamented that one of the many female candidates who ran, though regrettably one of the few who won her race yesterday, was a Republican hog castrater who aims to go to Washington to, in her words, “make ‘em squeal.” I wonder who she has in mind and how she got away with such unsavory rhetoric about testicles. Me thinks she listens to too much Rush, Limbaugh, that is.

To me, today feels like a somber day for so many women, a somber day for gay people, for poor people, for black people, a somber day for immigrants, for students, for the unemployed and for many more of us. I heard one winning candidate say, “It’s time to take our country back!” BackWARDS, I thought, to a time before Roe vs. Wade when pregnant victims of rape and incest died from botched abortions, to a time before the Voting Rights Act when minority voters were discriminated against at the polls, to a time where millions of fewer Americans had health insurance, to a time of failed trickle-down economics, when the banking and housing industry bubbles burst due to unbridled greed and lax regulation, to a time when illegitimate wars were fought over false claims and oil, to a time when my son could have been denied health insurance because of his preexisting condition, to a time of greater inequality.

I’m hoping that President Obama, in the face of congressional foes who have publicly claimed their promise to personally ensure his failure, which in turn hurts Americans (duh), can continue to make progress on immigration reform, can tighten corporate tax loopholes and reform tax policy so that the fast food worker isn't taxed at a higher rate than the millionaires and billionaires who rely on his or her service to profit, can raise the federal minimum wage, legalize gay marriage, demand equal pay for women, elect more impartial magistrates, can deliver health care to all Americans even when some Republican governors refused, can promise a decent education for all children regardless of their economic status, can continue his work on climate change, clean energy, infrastructure, jobs, can work toward legalizing medical marijuana, can level the criminal justice system, eliminate racial profiling and reduce the prison population. I really hope he can.

Yep, it's a somber day for many of us, but I'm heartened by the fact that there are plenty of progressive-minded people out there who want to move forward, not back. Next time we just have to get them to the polls.

Calvin, November 2004, photo by Michael Kolster

bittersweet again

Since my son’s birth ten years ago Halloween, my former favorite holiday, has soured into a bittersweet time of year. Though over the years I’ve had some fun dressing Calvin up in costumes—a pumpkin, a cowboy, a hippy chick, a clown, a manwitch—I’ve never taken Calvin trick-or-treating, never joined in our town’s Halloween parade, never taken him to a Halloween party. Photos on Facebook and the swarms of trick-or-treaters dressed in elaborate costumes knocking on my door make me swoon with adoration and sorrow. I have a love-hate relationship with the holiday remembering the ghosts of Halloween seizures past, some that put us in the hospital, others that sent me to the door with a bowl of candy and black tears running down my face. I recall the urgent and painful circumcision he had when he was two, meant to curb recurrent urinary tract infections that triggered his first seizures, and the nagging sense of loss over mothering a child with a chronic health condition which causes great pain and angst and limits all kinds of freedoms.



This year was no different as I watched my son spiral into his pre-seizure mania, a carbon copy performance of just seven days prior. As my mother-in-law and I doled out candy to the neighborhood munchkins, Calvin sat spinning in the middle of the floor, obsessed with his snapping fingers and oblivious to anything else. I wrote in my journal that day:



INTENSE. seizure coming. crazy, manic, hysterical. good walking. rash on chin. seizure breath. CRAZY BATH. FINGERING LIKE CRAZY. CRAZY @ DINNER. SEIZURE COMING.


I’d seen it on the horizon a few days prior when I'd logged in the journal, expect seizure within three days.



Halloween night was full of them. The second seizure, which was very convulsive, ripped me out of a deep and beautiful dream of a different time and place. The fit was likely followed by a handful of complex partial seizures which are difficult to discern, especially in the dark when I’m half asleep. All night long as I slept next to him, I was woken by the happy sounds of werewolves and goblins prowling down the street in front of our house while being tormented by my son's nightmarish seizures bubbling next to me in bed, all brought on because of a simple virus.

In searching for a photo to accompany this post, I came across many with Calvin in costume. In all but the ones in the years before the seizures and the drugs Calvin looks the same. His expression might be mistaken for a smile, but it is in fact a grimace. It is the look of having a headache or an upset stomach or of general malaise. The photos are bittersweet in that at first glance they look cute, but then the reality sinks in as a grave reminder of what is so grisly about a little kid who must endure this scary, relentless condition called epilepsy.

Calvin, Halloween 2009