tell it like it is

The pained looks on some of their faces made me sad. I wondered what they were thinking as I shot image after image onto the screen. Some of the still photos seemed to evoke similar responses to the video of Calvin's grand mal seizure from a few years ago. Did any of them have a brother or sister with epilepsy? Did any of them suffer from the disorder themselves?

This spring I was again asked by my friend Hadley to give a talk to her neurobiology class at Bowdoin College. It is a chance for the students, many of them pre-Med, to see a different side of neurobiology, one not seen through a microscope but through a distinct kind of lens—the patient one. I was also asked to give the same talk to my friend David's public health class, also at Bowdoin. I was most grateful for the opportunities.

Getting in front of so many sharp students and telling it like it is feels second nature, reminds me a little of my days of coaching swimming, looking out at the pool of bright faces filled with curiosity, hope and excitement—perhaps even a natural uncertainty—for the future. My hope is that my hour-long show of photographs and anecdotes of life with Calvin can somehow make a difference in how they see the world of health, medicine and disability.

I start by telling them about the white matter that is missing in Calvin's brain. I tell them about his premature birth, his first seven weeks in the hospital, his atrocious vision, his low muscle tone, his poor balance and coordination, his developmental delay, his form of autism, his incontinence, his inability to speak, his need for constant surveillance. Calvin, with all of his difficulties, I say, would be a piece of cake to handle if not for the epilepsy, the drugs and their side effects.

I tell them about the condescending physicians with chips on their shoulders. I tell them about the ones who dole out prescriptions for benzodiazepines like candy and yet don't seem to have a clue about how to wean them nor know the list of heinous side effects withdrawal can cause. I tell them about the neurologists who seem laser-focused on stopping seizures at any cost but seem blind to quality of life. I tell them about the doctors and nurses and technicians who placate me when I ask them to give Calvin their best phlebotomist or intravenous technician. I tell them about the neurologists who reject cannabis as medicine because of their fear and ignorance or perhaps their collusion with big Pharma. Then I tell them about the physicians who have partnered with me, who treat me as their peer, who aren't afraid to help a child even if it might cost them, who are open to new ideas and who aren't afraid to advance the treatment of epilepsy with cannabis.

After Calvin's sixth day in a row of seizures—thankfully only one of them being a grand mal—I began fearing daily ones might become our new normal and that I might have to cancel my presentations. But the spate broke the other night when I gave Calvin a small but concentrated dose of THC tincture made of cannabis flower, organic alcohol and oil. I've given it before, but in my best memory, never to stop a cluster of partial seizures at night. I can't know for sure, but it seemed to work two nights in a row.

Back in the classroom, many of the students were interested in the cannabis aspect of Calvin's story. They wanted to understand drug policy. They wanted to understand how I made the oil and how difficult it was to get a physician to recommend it for my child. One of them commented on how absurd it is that the government still prohibits cannabis use in the face of mounting evidence that, not only does it help, but that it is not as dangerous as other drugs. I began telling her about the reasons behind negative government propaganda from the 1930s and how the bogus racist argument fueling cannabis prohibition has shaped cannabis and law enforcement policy and has lead to the wrongful mass incarceration of African Americans, many of them innocent.

One student who had read a fair amount of my blog wondered why I wrote so much about politics. I told him that Calvin informs my opinions of things and that he has made me realize, more so than I did already, that marginalized communities suffer and face undue discrimination. I explained that if I could help folks understand the hardships disenfranchised people—the disabled, people of color, immigrants, LGBTQ people and Muslims, for instance—face on a daily basis, I might inspire empathy for them, and perhaps make folks think differently about public policy. I told him that since Calvin is non-verbal, I must be his voice, and that the same can be true of others of us who can advocate on behalf of people whose voices, because of fear and oppression, have been quashed.

In reflecting on my presentations, I realize one thing I left out: my little Calvin has emboldened me to speak more of my mind, to shout if I have to, to challenge authority, to voice frustrations, criticisms, and uncensored opinions. He inspires me to be evermore fearless amidst an oppressive, nonsensical, patriarchal, puritanical, often backwards world. Tell it like it is, he says to me in his singular kind of way. It may pain people to hear it, but how can I refuse?

Calvin, telling it like it is. Photo by Michael Kolster

stay fearless

"Stay fearless," she said at the end of the interview. The words of Kathrine Switzer, the first woman to run as a numbered entry in the Boston Marathon, stuck in my head along with images of her being chased and shoved by a race official in an attempt to rip the pinned number off of her chest.

These days, especially since Calvin was born, I try to live by those words. I try to avoid fear-based decisions. If I let fear grip me I know I'll be paralyzed.

Wednesday, when Calvin woke, he wasn't quite himself. I considered giving him an extra Keppra to thwart any impending partial seizures, but I decided against it, not wanting him to be too drugged up. Regrettably, within an hour he suffered the dreaded seizure after having become increasingly irritable and out of sorts. Later, I was loathe to take him to the grocer, but I remembered those words—stay fearless—so I gathered him up and drove him to the store.

I never know how much to push Calvin beyond his comfort zone. He has rarely walked outside for more than a few blocks, particularly since last summer when he broke his foot and lost a lot of the progress he'd made. Every time I try to take him past Woody's house three doors down he has a tantrum and I never know if he is simply being stubborn or if there is a grand mal on the horizon. Other times, he is both wan and flushed, and I wonder if he is having some sort of mild seizure or if his complexion is an indication of an aura. Often, his balance and gait are excellent the day before a grand mal. All of these things were true on Wednesday, but I took him to the store regardless because it was only day five since his last grand mal and over two weeks since his last benzodiazepine reduction. More so, I thought to myself that if I don't venture out because of fearing a seizure or provoking one, we'd never go anywhere.

So we went. Calvin did great, walking well and being mostly compliant. The next morning he suffered a grand mal. We both survived.

Sadly, Calvin is having some kind of seizure several times a week these days, though thankfully his grand mals are still confined to the night. With regard to reducing the fits, I've still got a few options in my back pocket such as increasing the CBD or THCA cannabis oils or trying a maintenance dose of THC. I could stop the benzodiazepine wean, but that would constitute a fear-based decision that might not yield much of an improvement, plus we've seen his behavior improve immensely with each bit of benzo we remove.

So, I'll try to stay fearless in the face of seizures and drugs side-effects and the thought of losing my child. I'll keep pushing beyond my comfort zone, however little, and keep encouraging Calvin to step outside of his own. After all, this is our marathon. Though it is often painful and scary, we're in it to the finish, so we might as well try to shine.

Photo by Ann Anderson

wondering and worrying

I'm sitting here tending to my drugged-up child who suffered two grand mals last night despite double doses of THC meant to thwart the second one. I'm sitting here in my pajamas though it's nearly three p.m. Outside it is glorious, perfect for gardening or sunning or walking the dog.

I'm sitting here wondering if I've given Calvin too much medicine or not enough; he vomited just after his morning dose of anti epileptic medications. I tasted the bittersweet benzodiazepine liquid in the thick spittle I kissed off of his cheek after he got sick. I had to guess how much to redose.

I'm sitting here, as my child sleeps, pining to go outside. I can hear the birds going crazy as the wind whips bows and swirls dead leaves into mini cyclones in the field. I'm sitting here worrying about the world, about our Ignoramus in Chief and his penchant for bluster, worrying about his impetuousness, narcissism, contempt, dangerous provocations, lust for power and warped craving for praise. I'm sitting here wondering if our nation's young men and women will be shipped off to war again.

Last night as I held my boy I heard the train whistle and the downstairs clock chime, then later the chapel bell ring. I hear a small aircraft flying overhead and immediately get that sinking feeling in my gut recalling lonely childhood days, remembering my young friend Martin who died with his father in a similar plane. I can just make out the river waters thunderously raging over the nearby falls and I think of the boy Calvin's size who went over Niagara that day. I laid there worrying—my angst is always worse before dawn—if Calvin might suffer a third grand mal. I wonder about the world's convulsions—the aftershocks, the fallout—in the hands of despotic men who selfishly want it all.

Photo by Michael Kolster

in good hands

Despite my penchant for kvetching, I want you to know that I do get out to celebrate with friends more than just once in a while. Here I am a last month with my homies Luke and Sarah, belly up to the bar, drinking a fabulous margarita at our local cantina while my husband was in Europe for three weeks taking photos, giving talks and putting up a solo show. During Michael's stint away, my buddies kept me (relatively) sane, entertained, and well stocked with flowers, firewater and food galore.

No matter how you slice it, I always seem to land in the good hands of neighbors and friends.

suffer the little children

While spoon feeding my thirteen-year-old son his lunch on a day he stayed home from school due to seizures, I watched a new documentary called Newtown. I wept through most of it, listening to the harrowing 911 calls from terrified victims hiding in offices and closets during what must have felt like an eternity of bullets spraying the halls. I remember the December day the Sandy Hook elementary school massacre happened a few years ago, remember thinking of those little bodies the size of my own son being shredded by bullets shot from an assault rifle in the hands of a disturbed young man of twenty. 

Had he shot one child for every year he languished on this earth?

Yesterday, I saw more haunting video of dead Syrian children, victims of an Assad chemical weapon attack on his own people. One man lost twenty-five family members, including his wife and infant twins, whom he held in his arms. Rows of lifeless children filled the back of a pickup, their eyes open and blank, their skin ashen, their chests bare from being hosed down in a vain attempt to save them. They didn't stand a chance.

And though I know the saying doesn’t mean what it sounds like, I still think to myself, suffer the little children. And then I wonder, why?

As dawn came, I laid next to my boy and I heard the morning doves coo. All the birds—the chickadees and jays and cardinals and catbirds and sparrows and crows—are beginning to go crazy now that the snow has almost melted and the purple spears of crocuses are beginning to shoot through. Lying there, I wondered whether, if the world’s leaders were replaced with women—no more an absurd idea than a world led by mostly men—there would be so much warring and genocide and rape and guns and bombs and atrocities between neighbors, tribes and nations. I wondered if female leaders would care more about Mother Earth. I wondered if, under female stewardship, the world’s children, rather than be made into child warriors and brides, would be fed and clothed and housed and educated and empowered and cared for. I wondered if, under female rule, we’d be fearing nuclear war and rising sea levels and air and water pollution like we do. I wondered if our children would be deprived life-saving medicines and a chance to live up to their potential in the world. 

Suffer the little children; they’ll be the ones who must live in this crumbling, power-hungry, greedy, misogynistic, patriarchal, intolerant world.

A man carries the body of a dead child, after what rescue workers described as a suspected gas attack in the town of Khan Sheikhoun in rebel-held Idlib, Syria. Reuters/Ammar Abdullah

letting go

In these trying times of political strife, climate change, war, famine, and stark inequalities, my son—despite his seizures, erratic behavior and significant disabilities—serves as a great elixir to intermittent despair. When at the hands of badgering, smug know-it-alls (including but not limited to the Poser in Chief), I look to Calvin to soothe, to calm, to remind me what is important and what should simply be let go.

You see, Calvin has no grasp of abstractions, no awareness of the passing of days, no concept of the outside world, of corrupt and greedy players, or liars, or fools. He does not discriminate. He does not hate. He does not manipulate. My boy simply sleeps when he is weary—save the times when drugs and their withdrawal mess with his system—eats when he is hungry, walks when he feels strong, and asks for hugs when he most needs one. Other than the most primal of human instincts, he has no care or worry in the world. 

So when the world's atrocities wrench me, and when situations or people bait and irk me, I turn and behold my sweet, handsome, impish, drooly, precious boy. He prompts me to remember what matters most, which is not amassing money or power, impressive homes or fancy cars, attribution or persuasion, aggrandizement or adulation; it is love and kindness, patience and understanding. It is existing to ease another's soul. It is the Zen of living deep and in the moment. It is the art of letting go.

July 2013

april fool

Just as the snow from the last storm had nearly melted, in comes another one dropping its down, burdening bows and concealing any color that had begun to show. I’d seen crocus tips emerge from the earth the day before, which had given me some hope. But, so far we’ve gotten at least half a foot as the flakes continue their descent upon what has again become a black and white world. 

Sometimes I wonder if Calvin feels my despair over these long winters and earthly woes. This morning he woke to a partial seizure—his heart pounding, his lungs grasping breaths in fits and starts, the telltale fingers of his left hand pumping back and forth in his mouth. I gave his meds early and crawled into bed with him as he went back to sleep, his arms hooked around my neck. April Fool, I thought of myself, and as I finally drifted off next to him the clock struck five-thirty a.m.

By seven o'clock he seemed fine, just as the limbs outside were so laden with snow they nearly touched the ground. At eleven, though, Calvin was bearing his own burden again, and after a second partial seizure he began a downward spiral into some sort of illness or spell of withdrawal. He cried and rubbed his head as if he were suffering a migraine, perhaps needed to vomit, or both. I held him until he calmed then he fell asleep in my arms.

The white sky keeps sending its fallout. Lumps of it drop from sagging branches. The day before this storm was the first day in his life that Calvin walked in a snowy yard, the stuff having melted enough so that he could manage, while holding my hand, without falling or getting snow into his ankle-high waterproof boots. I wondered if he will ever walk well enough to traverse the yard without my help, and then I thought about what a friend said to me about having adopted our dog Nellie, who is calm, loving, cute and well-behaved:

"It was meant to be," she said, to which I expressed my dissent of her theory. I wondered if she might use the same logic regarding Calvin and his afflictions. The notion made me bristle.

Nope, I'm just an April fool, stumbling around in this messed-up world with my wonky kid, nature's accident being Calvin's endless seizures that march through one month into the next seemingly no matter what we do.