2.04.2016

at the bar with lamar

We saddled up to the bar, my girlfriend Lucretia and I, and talked about Hillary and Bernie and their possible running mates and about how we wish we had a crystal ball. I touched her wavy hair, noticing how silvery it had become since I’d last seen her, and told her how beautiful it looked. Her eyes were bright and smiling and I draped my arm around her for a spell, happy to be out with my dear friend again.

We dined on Asian slaw with peanuts and hot Kung Pao chicken dumplings. Lucretia sipped on a Manhattan, a house-cured maraschino cherry nestled in the bottom of the glass, and I on a Pinot Noir. I’d gotten a jump start on her, having had two fingers of bourbon at Woody’s house before she arrived to pick me up, so I was giddy and happy to be out on the town.

Partway through our meal I leaned over and nosily asked the man in the seat to my left what he had just been served. He said the dish was scallops and potatoes. The three of us got to talking, first about the food—was it scalloped potatoes or scallops and potatoes? We told stories of where we all grew up, and I remarked on his sharp plaid button-down shirt and smart jeans, which got me to talking about my time at Levi’s, which segued into discussing his new job in human resources. We wondered where he’d traveled from, and if he was going to live nearby. I asked him his name and as he put out a strong hand to shake ours he told us, “Lamar.”

It was Lamar’s first night in town, having traveled from Detroit to work a week out of every month at a plant just up the road. He asked Lucretia and I how we spend our days, so Lucretia described the time on her farm and I shared about my writing and my boy. When I mentioned Calvin’s epilepsy, Lamar told us his thirty-year-old brother has epilepsy, and he asked how long Calvin has been having seizures. I said, “Since he was two.” I openly lamented knowing that Lamar had probably grown up taking care of his little brother. He nodded his head and bowed so I touched his leg lightly in accord.

For well over an hour Lucretia and I visited with Lamar, who is handsome and young, tall and lean, with a closely shaved head and nice brown skin. He told us of a recent break up and, in solidarity with our new friend, we agreed it was probably the right thing. We laughed and joked about this and that and vowed to gather again the next time he’s in town. As we parted we all gave each other hugs as if we'd been old friends, then Lamar said joyfully of our meeting, “This happened for a reason!” I replied that I didn’t believe in that notion and said I’d explain sometime.

When Lucretia dropped me off we embraced. Inside, Michael and his friend Matt were sitting in front of a rolling fire, Nellie at their side. We chatted for a bit before I kissed Michael, hugged Matt and said goodnight.

Sleep was sound until four o'clock when Calvin started into a grand mal, just five days since the last. In the seizure's wake I syringed in his benzodiazepine, hoping to thwart any more.

Lying there next to my boy while he shivered and shook, I felt a little headache coming on and then remembered why. But, knowing that earlier I'd met a new friend named Lamar, made me feel a little better somehow.

Photo http://poco-cocoa.com

2.01.2016

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.

Hillary Rodham (Clinton)

1.30.2016

day nine, yet grateful

I didn’t completely see it coming. Yesterday, the only indications of an impending seizure, which I star in Calvin’s daily journal, were his warm red hands and ears, wanting to drop down at school, and the fact that he woke up at four o’clock and never went back to sleep. Typically, in the days preceding a seizure, besides increased fits of hysteria, the journal is marked with a dozen or more stars, increasingly so, as the seizure approaches. So when I heard Calvin rip into his grand mal this morning at 3:45 a.m., I was surprised and disheartened.

However, I am also encouraged. This month Calvin has suffered only three grand mal seizures. In November and December he suffered six and seven respectively, plus clusters of a dozen or so partial seizures in the hours and days after the grand mals. In an attempt to quash at least some of his seizures, I’ve employed a few strategies. The first was to double Calvin’s bedtime THCA cannabis oil hoping to eliminate the clusters of grand mal seizures he’d have in any given night. That tactic seems to have worked, limiting his nighttime seizures to just one. The other step I’ve taken is to slowly syringe his clobazam liquid into his mouth right after the seizure to prevent a subsequent one when he wakes back up. This seems to be working, too, at least for now. The last strategy I’ve taken is to temporarily increase his Keppra dose the morning of a seizure to thwart the clusters of partial seizures in the wake of the grand mals. So far, so good! If these tactics continue to work, and if the extra THCA at night also buys us a little more time between grand mals, Calvin will have about three seizures a month, which is slightly better than the number he had two years ago when he was taking nearly eight times as much benzodiazepine and before we began giving him cannabis oil.

We continue to wean Calvin from that benzodiazepine, clobazam, aka Onfi, albeit at a snail’s pace of five percent every couple-few weeks. At this rate he won’t be completely off of it until August at the very earliest; we started weaning it almost two years ago.

I'm also encouraged because Calvin is on the lowest amount of pharmaceutical antiepileptic drugs in years, probably since he was three. I’m hell bent on getting him off of the benzo, but we have to do it safely and slowly enough so that Calvin doesn’t suffer. I whole-heartedly believe that, without cannabis, this wean wouldn’t be possible without causing Calvin terrible side effects such as sleep disturbances, headaches, cramps and a huge increase in seizures. As it is, the kid's balance, sleep and behavior are all markedly improved over recent years, and for that, I am most grateful to cannabis.

Photo by Michael Kolster

1.27.2016

remembering the holocaust

"A nation's greatness is measured by how it treats its weakest members."
—Mahatma Gandhi


Today is International Holocaust Remembrance Day, in observance of the genocide of an estimated six million Jewish people, two million Gypsies, plus 250,000 mentally and physically disabled people, including those with epilepsy, and nine thousand homosexual men by the Nazi regime and its collaborators.

The regime’s first victims, as early as 1939, were adults and children like my son Calvin, who were deemed as “useless lives” because of their physical and intellectual disabilities, and whose gruesome executions were meant to improve the economy and cleanse the Aryan race. The code name for the euthanasia law was "Operation T4." In the years that followed, millions of others met the same fate in Nazi gas chambers and suffered torturous medical experiments meant to discover how best to extinguish a soul.

I’d like to think that Western societies have learned from this atrocity and thus divorced themselves from these kinds of fascist beliefs. Regrettably, I know that is not true. I know because today I see fear, hatred and contempt for others seething in the hearts of some we know. I know because people like Donald Trump spout that Mexicans are murderers and rapists, and calls for the rounding up of Muslims, and mocks disabled people, and openly expresses his disgust for women. I know because wicked white supremacy is alive and well. I know because I see six white high school girls smugly spell out the N-word, each letter shaped with gold tape on their black t-shirts, substituting asterisks for Gs; they photograph it for the world to see. I know because I hear so many people who blame immigrants and poor people and minorities for society’s ills, want to round them up, drive them away, shut them out, knock them down. I know because people still stomp on the homeless and beleaguered rather than lending them a hand, a shoulder, an ear.

In remembering the Holocaust today—the nadir of recent times—I tightly embrace and revere the diversity in this nation and, most of all Calvin who, unlike anyone I know, is as pure and sparkling an example of what I find best in humanity: the ability to love, accept and embrace everyone, no matter who they are, what they look like, or where they're from.

From 1941 people with physical and mental disabilities were killed at a psychiatric hospital in Hadamar in Hesse [one of six similar locations]. Declared "undesirables" by the Nazis, some 15,000 people were murdered here by asphyxiation with carbon monoxide or by being injected with lethal drug overdoses. Today Hadamar is a memorial to those victims.

1.25.2016

breathing and cursing

When Elizabeth, a woman I’ve met only once but have known a few years, picked up the phone, my tears began to flow. I’d called a month or so ago, hoping she’d help quell my pain, worry and frustration about my son. I knew she’d understand because she has a child like Calvin of her own—Sofie—but also because I know, in part from reading her blog, that we seem to see the world and react to it in similar ways.

I wasn’t looking to Elizabeth for answers, only for her to lend an ear and perhaps validate my emotions and concerns. I used to turn to my mother, for one, when I succumbed to the gravity of despair. Mom always said in her loving voice, “No one can know how hard it is except for you,” and that was enough. But I lost my mother to Alzheimer’s, by degrees these past ten years then, finally, in early October.

It seems, too, that I may have lost a dear friend, a single woman with no children whom I've been close to for years. I'd called her last July in a similar moment of grief over Calvin, needing someone to listen, my mother long having become unable. Her voice was familiar, soothing and kind. Then, at one point she said something like: 

Christy, ever since Calvin was born you’ve been so angry.

She went on to talk about acceptance, and I questioned whether acceptance had to mean a denial or absence of anger. I asserted my belief that expressing anger can be healthy, even cathartic, and should be honored as one of our core human emotions right alongside joy and sorrow. She talked about the universe trying to find balance. Hearing this widely held theory, while appealing, offers me little consolation, the cosmos often feeling so much as if it tends toward chaos, albeit astonishingly beautiful nonetheless. After the mention of balance, we lost the connection mid-sentence. She tried to ring again but I didn’t pick up because I felt more disheartened than before I’d called, so she emailed me and began by saying:

you called today in a place we've all been and sometimes what we need is an ear, sometimes a distraction, sometimes an insight we didn't know we were seeking. 

And while I understand her meaning—knowing we all have our burdens to bear—she's never been where I am with Calvin. Still, I tried my best to be open to what it was she was saying, though I must admit I probably failed to hide my agitation. She ended with this:

my intent is unwavering which is simply to love and support you.

I replied:

i know. xoxoxo


I haven’t heard from her since. I wonder if she knows about my mother. I didn't contact any of my friends when Mom died—didn't have it in me. But friends and strangers soon learned from reading my blog.

A few days ago, when Michael, Calvin and I were in the throws of flu, seizures and sleepless nights, Elizabeth, Sofie's mom, wrote to ask if we could talk; she was in a hard place. I told her we were sick but that I’d try her over the weekend. I reached her yesterday and could hear her daughter softly moaning in the background.

For the good part of an hour we chatted about cannabis and a new strain she’s begun giving Sofie, one that has helped calm most of her seizures which were getting out of hand again. We talked about grief, frustration and anger, and about the parents who attest to graceful and patient caregiving of their complex, disabled kids. We marveled at such a feat, indeed wondered if it were truly possible. We joked about losing it when our kids' shit and food fly, when we fear for their lives, when their bleating becomes too much to bear, and when so much of our sleep is deprived (some call our condition PTSD, though in our case the P stands for Persistent). It seems we two, Elizabeth and I, are sisters in arms when it comes to our fleeting gracelessness and, at least for me, ceaseless complaints and pity parties with little restraint. We agreed that being able to get out our frustrations, at least by cursing, helps renew us for our endless duty to endure more. Because this caregiving of our disabled children and adult children who are non-verbal, incontinent, unstable and racked with seizures, is relentless and indefinite, the worry, fear and burden proverbial barbed thorns.

Elizabeth says to me, after I lament not being able to talk with her on the phone at the very moment of her most recent crisis:

I always know you are there breathing and cursing.

I smiled and chuckled as she went on to describe two tin cans connected by a string, as if we lived next door. If only.

Breathing and cursing, I mused. What a nice thought, and I felt much better when I hung up the phone.

Photo by Michael Kolster

1.23.2016

gratitude again

Every so often I sink into an abyss. My tumble is often triggered by clusters of my son’s seizures, all of which make me fear for the worst. Perhaps you can imagine. When this happens, my innards feel heavy, my surroundings harsh. Even bright sunlight knifes me, the shadows it casts longer and sharper because of its acute winter angle. Inevitably, something yanks me out of the hole, gives me hope, and I can begin to feel gratitude again, or perhaps it's gratitude itself which lifts me up. Here are some things I’m grateful for these days:

Happy boy. Spicy margarita aside a newish friend. A sweet drunk seated to my right. Our home. Lobster. Seizure free afternoons. Remedy. Cannabis flower and coconut oil. Dimmers. Charity. Rolling fires. Michael’s work. Home invasions of a particular kind. Furry dog, sweet dog. Hubby. Thick sweaters. Andy Borowitz. Going commando. Lamb. Photos from our wedding. Grandpa’s tavern lamps alit. Clocks. Books. Curiosity. Old friends. Writing. New friends. Calamari and kimchi. Getting to know someone. Liquid fabric mender. David Bowie. Rubber boots I can just slip my feet into. Expletives. My octogenarian friends. First boots for Calvin. A beautiful winter garden. Dinner guests on the way. Beth. Five dollar down pillows. Joni Mitchell in ways you could never imagine. Our wonderful POTUS. The Onion. Seat warmers. Art. Scotch broth. Artists. Good laughs. Dinner at someone else's house. Irreverence. Strange panoramas that expand space. Thoughts of spring. Nicole's yellow cake with chocolate whipped cream frosting. The feel of Calvin’s skin.

Photo by Michael Kolster