pray tell

Some of my lovelies have left at our door homemade applesauce, lentil soup with greens, garden hand balm, bottles of bourbon in brown paper bags, cookies, farm eggs and tomatoes and bouquets of wild and fresh-cut flowers. Pray tell, who left these beautiful blossoms in Calvin's baby pool the other evening when I was away? I send a thousand hugs and kisses your way.

going nowhere

When I graduated from college my parents gave me a set of luggage because they knew I had a desire to travel, both for leisure and, hopefully, once I landed my dream job. I moved home, worked an odd job saving everything I earned, then backpacked through Europe for seven months by myself, visiting nearly every Western European country, stopping and working in Paris for a month, and dipping into Turkey for five weeks. Two years later I returned to revisit Greece, explore what was then Yugoslavia, spent a weekend in Budapest then joined my brother, Matt, for a four-week adventure in Tanzania, Kenya and Egypt. My entire trip lasted two months. Ten years later, I revisited some of the same people and places that I had fallen in love with on my first visit to Africa.

In my early thirties, I finally landed my dream job designing apparel, which took me often to New York City, a time or two to London, and to Seoul and Hong Kong. Then, the year before Calvin was born, Michael and I explored Brazil for three weeks, the country in which he once lived, long before we met.

My desire to travel runs deep, perhaps, in part, because I’ve always been attracted to “other.” I have a passion for ethnic and exotic foods, for the hustle and bustle of crowded plazas, for the melody of foreign languages, for the customs, sights, sounds, music and aromas which are unique to different people in different parts of the world, for the beauty, love and wisdom in unfamiliar faces, for the kindness of strangers, some of who took me into their homes.

But since Calvin’s birth, and more so since we began treating his epilepsy with cannabis oil, I’ve been unable to travel much. In the past five years, I’ve been once to my high school reunion in Seattle, once to New York City for less than twenty-four hours, and to LA/San Diego for four brief visits with my mother who was in the thralls of Alzheimer’s until her death last October. It has been over a decade since I’ve visited what was once my beloved home for as many years: San Francisco.

In these past five years I’ve ventured virtually nowhere fun with Calvin and Michael; we can’t take Calvin out of the state because of the absurd and hypocritical federal prohibition of cannabis, even for medicinal purposes. Besides that, Calvin would be nearly impossible to find safe sleeping accommodations; he’s too big for a crib and he’d fall out of a bed and/or get out, fall and hurt himself. The kid is a veritable accident waiting to happen. I’m kind of amazed he’s made it this far.

In that time span, Michael has traveled and photographed in Virginia, Georgia and Pennsylvania for weeks at a time. He was gone for nearly a month when he drove all of his equipment cross-country to Los Angeles and back to photograph its famous river, stopping briefly in Albuquerque to visit friends. Last fall he spent ten days away on a faculty research grant shooting photos of Hawaii's parks and plastic beaches. He’s scouted, photographed and fished in Idaho and Wyoming and spent three weeks at an artists’ residency in Virginia. This fall he will fly to Verona, Italy to oversee the printing of his forthcoming photo book on rivers, and next spring he’ll be in Paris for a three-week residency and a solo show of his work. I don't resent him. Quite the contrary. I am thrilled he can make these things happen and that I can help. I just wish I could go with him.

As for me? I’m going nowhere. Calvin is too complex and difficult for others to care for long-term, and we can’t take him with us, in great part because of cannabis laws. He's even difficult to take on local day excursions because he isn't able to walk around by himself and often balks at doing so with our help.

My high school reunion is in September, but without a nurse to help Michael, I’ll have to miss it for the first time in thirty-five years. And though I dream of heading somewhere—anywhere—with Michael, and even with Calvin, I don't think it will be possible for me to travel in the foreseeable future.

But as I write this I realize I sound like a whiner. I say that because I sit here at my desk looking out on a gorgeous garden of my making, dotted with fragrant blossoms, bees and birds. I realize how ridiculously fortunate I am to live as comfortably as I do, and to have once had the privilege of traveling far more than a lot of people do. I realize, that from my own little hunk of this world, I can imagine, dream and create. I can pour my passions onto "paper" and into the earth. I can remember all of the exciting places I’ve visited, and recall the interesting people I’ve met, from Alaska to Amsterdam, Rio to Rome, Lisbon to Louisiana, Madrid to Mt. Kilimanjaro, and Belgrade to little, old Brunswick, Maine.

day five

Twenty-eight months into Calvin's withdrawal from his benzodiazepine, clobazam, aka Onfi, Calvin is definitely having more partial seizures than before we began the wean. The good news is that in the face of a ninety-plus percent reduction in benzodiazepine, his number of grand mals is holding pretty steady at just over four per month. It's the partial seizures that are becoming more frequent in the days following and in-between the grand mals. The increase isn't a huge one compared with two years ago, though it is substantial compared to several years ago when he went long stretches in between seizures but was a complete and utter raving lunatic most of the time on high doses of three powerful anticonvulsants, including an adult dose of clobazam (Calvin was only ten and weighed less than fifty pounds at that time).

Three summers ago, when Calvin's behavior and sleep were at their worst, and when I was in tears most days as a result, Michael and I decided it best to take Calvin off of his benzodiazepine and begin replacing it with cannabis oil. It was probably one of the best decisions we could have made. All it took was taking a serious look at the risks versus the benefits to his quality of life.

So, although Calvin is having several grand mal seizures every month, plus a half-dozen to a dozen partial seizures, his grand mals are now—at least for now—only at night where he is safe. His body is calmer, he is less hyper, not as loud and crazy, sleeps better, except when he is in the worst thralls of withdrawal, and seems to be learning to express himself better. All very good things.

What is daunting is that Calvin has been in this active state of benzo withdrawal for over two years and we have at least one year to go. What is exciting is the prospect of his seizures possibly diminishing once he is free and clear from the miserable drug.

So, though it has only been five days since Calvin's last grand mal, I remain hopeful. We've come to a better understanding of how best to do the benzo wean and avoid its most harmful effects—that being status epilepticus, hospitalization and nights of physical agony.

And so, we soldier on, in hopes of a better life for our family and our boy. Thank you, cannabis oil.

Photo by Michael Kolster

soldier on

In bed with him again, spooning, my arm draped across his little waist as I feel his chest rise and fall in peaceful rhythm. Moments earlier, his heart was racing as if to jump clear from his ribs, his brain lightly seizing.

My son is innocent and pure, knows nothing of the ugliness in this world, and yet he seems to feel its pain. Perhaps he channels its miserable convulsions. Still, somehow, he perseveres, he soldiers on.

As I clutch him, feel his smooth skin, smell his hair and breath, I feel blessed. Lying awake at four a.m. again, my thoughts wander to the mothers I know who’ve lost their children—Lidia, Cornelia, Susan, Christine, Debbie, Emily, Chris, Anna Karen, Betty, Kari, another Debbie, and Ilene—and as I mourn their losses, I feel a universe of gratitude for the chance to be embracing mine, though I wish I could end his malaise.

In the dim room, my mind shifts to others who lost a son. I think of Ghazala and Khizr Khan, the Gold Star parents of Captain Humayun Khan who was killed in the Iraq war, all decent, loving Muslim Americans who came to this country for a better life, then paid the ultimate price. The image of the solemn couple speaking at the Democratic convention challenging a repugnant Trump is seared into my mind—their sorrow, the the weight of having buried their child evident in their faces.

And as if their loss wasn't enough, the callous twerp who calls himself a man, who aims to be the next to lead this nation, rather than showing empathy, cowardly knifes at their open wounds for his own selfish gain and satisfaction.

I am not one to embrace hate, but I believe this growing loathsomeness in my heart is evidence that I may detest at least one: the manchild Donald Trump. In my lifetime I can think of few worse offenders. He has called Mexicans rapists. He associates all good Muslims with terrorism. He has endorsed the killing of innocents. He revels in the notion of torture. He has slandered nearly every race of people. He belittles and offends women and has been accused of rape. He says perverted things about his own daughter. He berates the grieving parents of a fallen American soldier. He mocks the disabled. Threatens any challenger. Incites violence. I’ve no doubt he feels serious contempt even for his own supporters. He’s a sorry excuse for a human. A petulant toddler. A coward. A wimp. He has no grasp of geography or history or geopolitical forces at play. He appears to care for nothing and nobody but himself. He’s a grade school bully. A charade of a man. A liar. A fool. A swindler. A fraud. A cad.

I truly believe that this lowlife possesses zero humanity. How can someone so crass and senseless, so hateful and contemptuous, so obscene, so ignorant and yet conceited, who threatens every liberty, be asked to lead a nation?

As I hold my son, my heart weeps for the Khan family. I embrace the couple in my thoughts, surround them with colorful, sparkling, virtual blankets of solidarity, love and admiration. I lift them above the fray of angry men, some of them no more than petulant children. Sunlight begins to creep around the blinds, and though my little sleeping bird—who gives me faith in most people’s better nature—has no voice, there is a morning chorus out there of those who do. So, for our children and other decent, loving, compassionate people, we must soldier on and defeat this miscreant who has an appetite for scorning the very people and things that make up our good nation.

Khizr and Ghazala Khan remembering their son, Captain Humayun Khan

broken feet and seizures

Four weeks ago Calvin fell out of his bed and broke his right foot. He got the cast off last Tuesday and has been limping ever since. The doctor said this is to be expected, but it looks slightly swollen still, and he doesn't walk on it for any distance before wanting to be picked up. My fear is that it hasn't healed, so hopefully we can see the doctor again this week.

At the grocery store yesterday, Calvin asked to be picked up before I was finished getting all that I needed to get. I scooped him up between his legs in a sideways carry and pushed the cart with my left hand which also cradled his upper back. When we got to the checkout counter, I set him down gently and asked him to wait while I paid. He reached up to me and fussed, whined and hugged my neck, put his fingers in my mouth, grabbed my nose, and ravaged my hair, which had been tied loosely in a bun. I leaned down and gave him a big hug.

I mentioned to the clerk and the man standing behind me that my son had just gotten his cast off after breaking his foot and, to add insult to injury, that he was likely going to have a seizure in the morning.

“He’s a complex kid,” I said, and the man behind me, who had a twinkle in his eye, smiled.

I explained myself not for my benefit, but for theirs. I figure too many folks make snap judgements when they see a fussy child like mine. I figure it’s good if I can help raise awareness and encourage folks not to jump to conclusions or to judge.

At four this morning Calvin had the seizure I'd expected. When we heard Calvin screech, Michael and I scrambled to his room, untied his safety netting and lowered the side panel. I reached in to protect Calvin's feet, particularly the one he’d broken, from slamming against the side of the bed. Once I’d pushed them to safety, I grabbed the vial of frankincense and rubbed a bit on each toe and arch, at the back of his neck and at his temple, then held the bottle under his nose for a bit. The seizure stopped shortly thereafter, and he suffered zero aftershocks while I laid with him in bed.

Today, Calvin doesn't want to put weight on his foot. I wonder if he might have kicked the side of the bed when he first began to seize. I wonder if I made him walk too much or too far yesterday. I lament not having secured the safety netting the day he fell out of bed. I wonder if he'll every walk "well" again.

So, we'll spend the day indoors again where I'll watch out for partial seizures in the grand mal's wake. I'll keep him from staring at the sun and poking his eye. I'll give him a bath and offer him a nap, change his diapers, feed him his food, clean up his mess, give him his meds, and I'll carry him up and down the stairs to keep him from standing too much on his poor little foot.

Photo by Michael Kolster

if i had a daughter

I grew up a tomboy with four older brothers and a sister, all children of a strict, working father and a stay-at-home mom. Dad and Mom raised us all to be self-sufficient. There was no division of labor between boys and girls. We all ironed clothes, washed dishes and mowed the lawn. Dad spent hours under the hood of our cars showing us how to tend to an engine, change the oil, lube the bushings and change a tire. Dad taught me how to defend myself against would-be attackers, because he knew that women are targets. I wasn’t afraid of boys, and I held my own in playful brawls with my brother—my small size, speed and agility were to my advantage.

In junior high I was one of two or three girls in my science and shop classes, and I earned a varsity letter in swimming. In high school I managed the boy’s swim team, was a lifeguard and played on a co-ed water polo team as one of the faster swimmers. I became the head coach of a summer league swim team, taking it from the bottom of the league all the way to second place in the champs. The job paid well enough to enable me to put myself through college. After college I backpacked solo through Europe for seven months on a shoestring budget. I grew up feeling as though I could accomplish anything if I simply desired it enough and was willing to put in the hard work.

Then I entered the work force and, though I was eventually promoted from every starting position, I began to see inequity between the sexes. It was the first time I’d heard the sorry news that women made about seventy cents for every dollar a man took home. I worked in the garment business, and though it is an industry largely made up of women, most at the top are men. At one of my jobs I was privy to the company salary information, and I saw for myself the discrepancy in pay between my male and female colleagues, even though the company was owned and run by a woman.

I always dreamed that if I had a daughter, I’d raise her to be confident, assertive and strong and to defy the gender roles imposed on her by a patriarchal society. I’d show her how to stare down and boldly greet a row of lunching construction workers to best diffuse their hawkish glare and tendency to jeer. I’d encourage her to speak up for justice and not to act subordinate because of her gender. I’d tell her she is as capable as her brothers in most any situation and, likely, better in many. I’d teach her to be proud of her body and to call out those who would subjugate her because of her gender or the clothes she chooses to wear. I’d teach her the history of women’s suffrage and stress her right and her duty to vote. I'd tell her not to limit herself and to never give up on her dreams.

And if I had a son who could understand, I’d teach him all the same things. Alas, Calvin is incapable of such abstractions, but if he were, I’d like to think he’d be a feminist. Some of feminism’s best are progressive men.

I say all this because I think I did have a daughter for eight weeks or so until I miscarried, and if she had survived I’d be telling her why I hope a woman will be our next president.

Don’t get me wrong. I, too, feel the Bern, as Sander’s supporters like to say. He’s got a lot of bold notions and he's coming from the right place, it seems. But I can’t shake the feeling—not that I want to—that it’s time we finally have a woman leading our nation, as the face of the USA. Like I said, Bernie is fine and good, and the two have a lot of the same ideas and would likely accomplish similar things, but at this place and time when folks on the right want to take us backwards and rewrite history in so many ways—men trying to legislate women's bodies and limit our access to healthcare, for instance—I feel the need for us to crush that glass ceiling to smithereens. I mean, it’s 2016. C'mon people! Now is the time. Besides, we've clearly had our share of male presidents, some who've gotten things done, others not so much. Goddammit, for once lets show the world what a woman can do!

I've little doubt, coming from experience having been a girl and a woman all my life, that much of the hype, scandal and contempt against Hillary can be explained away as gross examples of misogyny, by men who fear and scorn her brilliance and power and by women who, perhaps, envy it. If you aren't sure, just watch an hour or two of the Benghazi hearings where lawmakers hazed the former Secretary of State for eleven hours, trying their best to wear her down and burn her at the stake. You will witness her formidable mind and resolve, her stamina, confidence and calm. In her you will see the makings of an amazing Commander in Chief.

In what some call a man's world, I'm tired of hearing assertive women described as bitches, sick of people like Donald Trump describing women's bodily functions as "disgusting" and other conservative politicians coining cruel terms like "legitimate rape." What the hell is that supposed to mean? I'm sickened by stories of women being abused in their homes, assaulted at work and attacked on the street, maligned by the sick likes of Rush Limbaugh, neglected by the work force, criticized for their attire, and of female geniuses lauded for their cooking rather than for their brains. I'm disgusted by male conservative politicians chipping away at women's access to birth control, cancer screening, family planning services and legal abortion when really, if men could get pregnant, it would be a completely different story. I'm so over the white male dominated film industry and the lack of important roles for women—and people of color, for that matter. I want the world to come into some sort of balance, and I begin to think it is possible when I hear people like Gloria Steinem speak. She says things like:

The more polarized the gender roles, the more violent the society.

And I see the gross level of violence in this country, and I ponder all the good that is possible simply by having a smart, amazingly qualified, determined woman at the helm.

As much as I like Bernie Sanders' idealism and passion, and for all that he may or may not be able to get done in Washington, he is yet another white male (not that there's anything innately wrong with that.) Consider, however, Ms. Clinton's wealth of experience with foreign policy and world advocacy for women and girls. All other things being equal, I believe Hillary will be able to accomplish as much, if not more, than Bernie, while at the same time being a beacon of what is possible for our daughters. She is strong, capable, brilliant and experienced.

If I had a daughter, she'd be about thirteen, and perhaps in a year she'd be looking at the President of the United States, seeing a face familiar in ways, and knowing—for real—that dream could one day be hers.

Originally published 2.1.16

Hillary Rodham (Clinton)

hopalong cassidy

Our little Hopalong Cassidy gets his cast off tomorrow! First thing he gets is a bath.