4.27.2017

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

4.21.2017

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

4.15.2017

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

4.09.2017

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.


4.07.2017

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

4.03.2017

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

4.02.2017

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. 

3.29.2017

the monsters are due on maple street

"The tools of conquest do not necessarily come with bombs and explosions and fallout. There are weapons that are simply thoughts, attitudes, prejudices, to be found only in the minds of men. For the record, prejudices can kill and suspicion can destroy and a thoughtless, frightened search for a scapegoat has a fallout of its own, for the children and the children yet unborn."

—Rod Serling

If you cannot view the video below, click here.
Twilight Zone - The Monsters Are Due on Maple Street-SD from Tracie on Vimeo.

3.27.2017

out in the world again

For weeks, if not months on end, I’ve been losing myself, drowning in the mire of a disabled child's life, a human shadow traipsing around as Calvin makes endless loops around the house. I'm losing myself in the weariness of monotonous days, losing myself in loads of laundry, a sink full of dishes and bursting bags of dirty diapers. I’ve been losing myself in the whiteness outside, the prolonged cold, gritty streets and frigid wind. My circumference, as my friend Lauren said, is notably smaller in winter. 

When the mercury made it above freezing yesterday, Lauren rang asking if Calvin and I might like to join her for a trip to the Giant Steps. Calvin had had a good night and morning, and was in a rare mood, so I agreed. Within an hour I’d taken a shower, changed three diapers, drew up Calvin’s late afternoon cannabis oil, packed up some snacks, some juice, a bib, a rag, some diapers and some wipes. I loaded Calvin into the back seat of Lauren’s car—at thirteen, he’s just barely big enough now to ride without a car seat—for the scenic drive down Harpswell Neck to Bailey Island.

Halfway there I was able to look up from feeding Calvin to see the open ocean on one side of the peninsula and Mackerel Cove on the other. The scene was picturesque, like one you’d see on a postcard: a dozen or two boats hitched to their moorings floating in a sheltered cove, leafless grey trees, their diaphanous canopies like clouds resting on the horizon. My view reached scores of miles, far beyond the mere feet or yards I'm accustomed to seeing in town. I felt my chest expand and my spine straighten up like I do when I step off of a plane in the West. As we drove, I soaked in the view. Cedar shingle and painted red saltboxes and capes sprouted from snowy knolls against a backdrop of blue sky and sea. Clumps of sumac branched like frozen dancers along the side of the road. I felt as if I were in another world, and then I realized it was one I had simply forgotten existed so close to home.

Turning down a narrow lane, we saw the ocean splayed out before us. Lauren dropped me and Calvin at the trailhead while she parked her car up the road. In an act of defiance, Calvin planted his feet, wouldn't move, and began expressing his disapproval of the cold and/or his inability to transition to the strange, new place. His tantrum included a mix of laughter and shrieks. I struggled to prop him against my knee rather than letting him fall to the soggy ground. Finally, I had to hook my arms under his and carry him to a wooden guardrail where I thought he'd be willing to stand. On approach, I misjudged the height of the railing, he lunged and pitched forward over it. Had he more momentum behind him, he might have plummeted over the edge and down the rocky escarpment, a demise that, for an absurd second at that exasperating moment, I imagined might have been fitting.

When Lauren joined us she took one of Calvin's hands and helped me walk him down the narrow trail to our destination. I was surprised at how well he did. Several yards ahead we found a spot to stop and rest. Lauren sat with Calvin so I could peer over the ledge to view the Giant Steps, a glacial rock formation I had never seen. The mammoth cube-shaped rocks looked as if they'd been placed there by Hercules. As I squinted out over the Atlantic I began to weep, realizing how confined I've been for so long, and grateful to Lauren for having lead me beyond my comfort zone.

On the way back, we had to wrestle with Calvin who, several times, struggled to stop and drop in the mud. All in all, though, he was very compliant and even walked the extra distance up the hill to the car.

Today, it's raining, revealing the green of things, and though I'm stuck indoors once more, I've been reminded that sometimes with a little help it's not too difficult, yet enormously vital, to get out in the world.


Photo by Lauren Catlett

3.21.2017

the promise of spring and lindsey's peas

Though a foot of snow still covered the ground, it was mild when I put Calvin on the bus yesterday morning and, being the vernal equinox, I hoped I'd soon see early signs of spring. I alerted the driver and the aide that Calvin was a little “off,” likely because he’d had two brief partial seizures on Sunday requiring some extra meds. He’d been restless Sunday night, then woke early, trembling and humming repetitively. While I made his school lunch he spun in his jumper, snapping his fingers wildly and covering his ears at times as if to block a phantom noise.

After school when the bus dropped him off, his aide mentioned how well he had walked and what a good afternoon he’d had. Hearing that raised my suspicion, knowing that unusually good walking is often a harbinger of seizures to come. Once inside the house, I noted other omens: a persistent and severe rash on his buttocks, mottled legs, restlessness, foamy drool, warm hands and red ears. However, he was relatively quiet and, considering it was only day five since his last grand mal, I figured he might be out of the woods.

Around six, Lauren stopped by with homemade lasagna for dinner. Just as I was putting Calvin to bed, Maura popped in impromptu on her way home to join us for a drink. The tulips she had brought me last week were in full splendor. Though he was slightly restless again, Calvin drifted off to sleep just after seven. My soul sisters and I gathered in the kitchen and talked about the Trump administration's unconscionable ties to Russia. We expressed our disdain for republican swamp monsters who aim to tear apart our beloved institutions, sacred freedoms and protections. We lamented our weariness of the poser in chief, regretting that Hillary isn’t seated in the Oval Office surrounded by experienced people, making fair policies to protect all Americans, especially marginalized ones, and partnering with important world allies like Angela Merkel. We thought about our daughters and our friends' daughters and pined for female leadership in this lamentably patriarchal world. We toasted to the coming of spring.

As we sipped our drinks, Maura noticed a picture postcard propped on the windowsill featuring Lindsey, a sweet, bespeckled little girl with a loose thick braid, a girl not too dissimilar from Calvin. Next to the card sits the packet of dry peas sent by her mother, as in past years, in honor of her daughter's birthday. I noticed that the card and seeds had arrived on the first day of spring and what would have been Lindsey's ninth birthday had she not died in her sleep a fortnight ago. I promised myself to plant the peas in a pot at the base of the bird feeder once warmer weather comes.

At ten last night, Michael not yet home, Calvin suffered the looming grand mal. After giving him a tiny squirt of THC rescue tincture, and in its wake an extra dose of THCA oil, I wrapped him in my arms and could hear his heart beating through my pillow. I thought of sweet Lindsey who I had cradled in my lap a time or two, grieved for her loving mother and my dear friend, her uncle, and held them in my own heart for a spell. Calvin slept soundly enough for me to think he was out of the woods. Nevertheless, at four o’clock he had a second grand mal, so I had to use the rectal Valium I loathe to give, or risk him having more.

March, long notorious for bringing ear infections, viruses and extra seizures, came in like a lion; Calvin has already surpassed, by one, his monthly average of four grand mals. Today is grey. The snow is slowly melting. The crocuses are no doubt eager to push their way through the earth into the outside world. In a month or two Lindsey's pea shoots will wind their way, like her curly hair, up a makeshift trellis. There will be birds to feed, lawn to be mowed and flowers to be cut and brought indoors.

3.16.2017

an open letter to jeff sessions regarding medical marijuana

Dear Mr. Sessions,

Meet my thirteen-year-old son Calvin. He was born missing a significant portion of the white matter in his brain, a heartbreaking idiopathic anomaly. He is legally blind, non-verbal, incontinent, and needs great assistance to do the simplest things. He is also the purest, most affectionate soul on earth. 

When Calvin was eighteen months old he began having seizures, the worst of which did not initially respond to a bevy of emergency medication. My husband Michael and I were left helpless and grieving at his bedside kissing him goodbye when the forty-five minute seizure finally stopped.

For the past eleven years Calvin has continued to suffer thousands of seizures despite taking high doses of ten powerful antiepileptic drugs—sometimes as many as four at a time—and two rigorous dietary treatments. The sedative drugs have stunted his already protracted development, and their sometimes paradoxical side effects have wreaked havoc with his behavior.

Three years ago, when Calvin was suffering frequent (every week or two) early-evening grand mal seizures—often while in the bath—and after some extensive research, I began treating Calvin with a homemade, non-psychoactive THCA cannabis oil. Since reaching a therapeutic level of the oil, Calvin has had only three daytime grand mal seizures in over 900 days. Moreover, in that time Calvin has been able to safely reduce his dangerous and addictive benzodiazepine, clobazam, by over ninety-five percent.

When I read that you said, “medical marijuana has been hyped,” it was clear to me that your position is one that stems, at the very least, from ignorance. I invite you into our home to spend some time with our boy and to witness our experience. For some children with catastrophic, medically resistant epilepsy, cannabis is their only hope. I wager you'd be hard-pressed to remain a skeptic if you spoke with parents of children who were literally dying from the effects of hundreds of weekly seizures until they received cannabis oils that stopped those seizures in their tracks. And while children like my son benefit from concentrated oils that can be precisely titrated, some adults who suffer from conditions like multiple sclerosis and Parkinson's disease often get relief from their symptoms by smoking or vaping marijuana.

You might be apt to suggest that cannabis is not safe or effective or that we don’t know the dangers of its side effects or its interactions with other drugs. I'd counter by saying that the same can be said of the pharmaceutical medicines some of our children currently take. Some drugs have debilitating and dangerous side effects, others have unknown longterm side effects, while still others have known lethal ones. Some pharmaceuticals are highly addictive and lose their efficacy due to habituation. Many, if not most anti-epileptic pharmaceuticals, are psychoactive. Not all of them have been studied on little children, and yet they are prescribed nonetheless.

Cannabis has been a lifesaver for many children with the most severe cases of epilepsy. Cannabis has immensely improved Calvin’s quality of life, and thus ours. We now have a much calmer boy who takes far fewer drugs, who can now, for the most part, walk by himself, who sleeps well at night and is learning to express himself.

I hope that you would not make reckless judgments about a subject that it appears, as evidenced by your statements, you know little, if anything, about. 

Sincerely,
Christy Shake

Me and Calvin, Photo by Ann Anderson

3.15.2017

perfect storm

The sum of a raging blizzard plus low barometric pressure plus a large waning moon in the sky overhead on the morning of day ten plus a recent benzodiazepine reduction equals my son's two-minute grand mal seizure at four a.m. Thankfully he's already on the mend.

3.13.2017

uppers and downers

downers:

quiet house. grey days. racism. sleepless nights. epilepsy. indecision. long frigid winters. gawkers. manipulation. bullies. dog shit. climate deniers. condescension. frozen earth. conservatism. pettiness. don the con. blizzards. stubborn son. microagressions. my child's benzodiazepine withdrawal. know-it-alls. trolls. liars. prisons. borders. war.

uppers:

quiet house. husband. calvin's hugs. writing. patient, kind, understanding folks at the grocery store. crocuses. pine cones. robins. friendship. hopefulness. modest homes that feel expansive. homemade espresso with warm milk. early evening light. forgiveness. bourbon with my friend woody. asian slaw. openness. calvin's bedtime smiles. philanthropy. rolling wood stove fires. nellie walkers. snow-blower neighbors. kindred spirits. rain. sun.

Crazy illusional photo-stitch panorama by Michael Kolster

3.12.2017

waiting to be all done

In the wake of a full moon, I woke this morning to three degrees. Winter still has its grip on us, the temps not expected to rise above freezing for another week, plus a foot or more of snow coming in the next couple of days.

Tomorrow, I am set to reduce Calvin’s benzodiazepine once again, lowering it to two milligrams per day from a high of thirty-five three years ago when he weighed far less. And though this represents a greater than ninety-five percent reduction, it will take us over seven months to get Calvin completely off of the stuff.

I was lamenting yesterday that I had ever agreed to put Calvin on a benzodiazepine, Klonopin, when he was tiny and only three. Dr. Rx had told me that it was meant simply as a bridge drug while another one got up to speed. But what I had failed to question was his insistence to add it to a two-drug cocktail, and if I knew then what I know now, I would have resisted adding the benzo to his regime. Though I continued to press, Dr. Rx kept Calvin on Klonpin for over a year, and it took the use of a second one, Onfi, a year later under the care of a different neurologist to get him safely and effectively off of it. And though Benzos are meant only for temporary use because of their propensity to cause addiction, Calvin has been on Onfi since he was five; he's now thirteen. 

Recently, I read an open letter about the trouble with benzodiazepine withdrawal, and though I’m fully aware of their dangers and heinous side effects, it killed me to hear it first hand from a victim, knowing with great certainty as a witness that Calvin is suffering in similar ways:

We trusted our doctors and took a pill, as prescribed, and it damaged one of the two main “circuit boards” that regulate our brains. We have damaged GABA receptors, which means our bodies and minds don’t have the ability to slow/calm down. We suffer from chemical brain damage that can take a long time (sometimes years) to heal. Many of us have severe physical symptoms: painful joints, bones, muscles, teeth, eyes, mouth, etc. Our skin burns. It feels as if we have bugs crawling under our skin, or that bees are stinging us. Our muscles twitch and spasm. Our legs are weak and our balance is off; walking is difficult. But some of us do walk, and walk, and walk, as we are suffering from akathisia, a movement disorder that causes an inner restlessness and a compelling need to be in constant motion. We have painful and frightening pressure in our heads, making it feel as if the world is sloshing around us. Many of us are bedridden for months at a time, unable to take care of the most basic of human needs. We can’t think properly, and our memory is impaired. There are countless other physical symptoms that we may have as this is not an exhaustive list. What we want our friends and family to know is that we are sick and in pain. It’s hard to manage our lives. Many of us are unable to work or to function in our roles and duties as a parent. On top of being physically sick, we have mental symptoms as well.

Without a functioning GABA system to calm the fight/flight/freeze response of our brains, we live in a state of fear, anxiety, paranoia, or terror. We may have depersonalization or derealization. Frequent panic attacks are common. In benzo withdrawal, we lose the ability to feel positive emotions. Love, happiness, and joy are not within our reach. We slog through our days feeling a zombie-like doom and gloom. Intrusive and looping thoughts are common. We have very little control over our minds. Visual, auditory, and olfactory hallucinations are not uncommon. We wish that our friends and family understood how frightening it is to lose the ability to think rationally and to no longer feel as if you are the same person you were before benzo withdrawal. It is hard to live in the altered reality that benzo withdrawal can create.

What compounds my despair is the fear of what benzodiazepines do to the developing brain of a toddler, tween or teen. I wonder if Calvin will ever go back to being what he might have been. I wonder if the benzos are why Calvin spoke only one word once: Mama. I wonder if the benzos are why his memory and ability to learn have been so severely limited. I wonder if he will ever fully calm, if he’ll stop his fidgeting fingers, if he’ll stop poking his eye and grinding his teeth, stop his shrieking. Or, has his brain been forever damaged by the fiends?

Some have told me that we mothers of children with chronic epilepsy suffer from traumatic stress syndrome, the word “post” conspicuously missing since we deal with the trauma of our children’s condition in real time. I'm not sure I totally agree, but I do know that dealing with my son's condition amplifies any worries over money and time, deepens the burden of everyday living, exacerbates emotions such as anger and angst, strangles my patience with the ordinary and tests the limits of tenuous relationships.

But, with luck, in less than a year my boy will be all done with benzodiazepines and will truly begin to heal. My hope is that we, too, will be on the mend, moving forward beyond some of our most troubling times.

Calvin signing "all done" Photo by Michael Kolster

3.05.2017

unrelenting

At five degrees and four o’clock this morning, I woke to Calvin’s seizure scream. It was the second grand mal in nearly as many days, following fever, vomiting and two partial seizures yesterday, plus a spate of bad days in the previous week. More violent than most, Michael and I had to work to keep Calvin's feet and hands from hitting the wooden flank of the bed, and he must have bitten his cheek or tongue because blood trickled from his lips. Since the three-day string of seizures didn’t seem to be abating despite extra cannabis oil and Keppra, we opted to give him the rectal Valium. I undid his diaper and inserted the lubed-up tip of the vial’s syringe into his rectum, then depressed its plunger. Within seconds, the benzodiazepine entered his bloodstream and bathed his brain; the spasms calmed, and not long after he drifted off to sleep.

Outside, freezing winds whipped bows into a frenzy and pressed into the seams of windows. The furnace fought hard to keep up. I crawled in next to Calvin, noting how much bigger he is getting and wondering if he has outgrown current doses of his meds. We spooned for an hour or more before I finally slept. In that hour, my mind wandered, pondering recent events. I thought about the kindness of my friend and her kids who walked Nellie in a windchill of three degrees, and of Michael’s student who took Nellie the day before in similar frigid temps. I grieved for my friend who woke up to find her precious eight-year-old daughter lifeless two mornings before, and I wondered if my boy might be next. I recalled a conversation about feeling stuck in life, backed into a corner of sorts, and wondered when I'll next escape.

We're so close to getting Calvin off of his daily benzodiazepine, yet so far away. We are within days of reducing it to two milligrams per day, down from a high of thirty-five when we began weaning it three years ago. It will take a miracle to get him off of it by my birthday in October, though I suppose anything is possible. But for now we will pause the wean for a bit so that Calvin can get his bearings.

Like winter in Maine, my boy's seizures prove stubborn and unrelenting. And just when I think harsh conditions are about to let up, we're hit with extreme temps, clusters of seizures and gale force winds. From inside our cozy home, I pine for milder weather, to be able to get outside and sink my spade into the earth and work my world into a more satisfying form. I ache to be rid of this benzo once and for all with the hope that Calvin's seizures—some of them likely due to the withdrawal—might be milder and further apart. But for now, I guess, we'll have to weather these unforgiving conditions and hunker down for a bit.

2.27.2017

oscars, blogs and politics

If it weren’t for what I’ve written in this blog these past six-and-a-half years, many of you might be unaware of the struggles one faces raising a significantly disabled child who suffers from a chronic condition as heinous as epilepsy. This blog is a platform from which I can raise awareness, hoping, with my words, to inspire greater compassion and understanding for individuals and families who endure burdens sometimes beyond most people’s comprehension.

I write so parents teach their children not to fear or bully kids like Calvin. I write so society doesn’t shun families like mine. I write with the hope that folks think twice before judging us and others like us with our sometimes manic and often peculiar children. I write so readers better understand marginalization and inequity and then question the bitter contempt they, or others, hold for anyone who looks or acts or sounds different from themselves.

This morning, I read an opinion piece titled, To-Do List for the Actors and Actresses Who Want to Turn the Oscars Into Political Programming, written by a young white conservative man named Justen Charters. He starts by applauding Lady Gaga for not making her Superbowl halftime performance political. His comment made me wonder if he had paid much attention to the show. I mean, not only did she revel in singing what some might consider the Gay anthem, but she chose Woody Guthrie’s, This Land is Your Land, no doubt in my mind a rebuff of Trump’s attempt at disenfranchising so many in this nation.

Charters goes on to chastise actors and actresses for making the Oscar’s into a political platform, for taking the stage and speaking against racism, sexism, xenophobia, bigotry and the current administration's attempt to oppress and malign non-White, non-Christian people living in—and desperate refugees hoping to come to—this nation. Charters' suggestions that actors take their political advocacy outside of the celebrity event and instead make documentaries about immigrants, and go "to a place where women are in dire need of help” in order to fight for women’s rights, proves his obliviousness to actors' long and active history of championing against inhumanity (think Ashton Kutcher, Angelina Jolie, Eva Longoria, Olivia Wilde, Kerry Washington, Matt Damon and George Clooney to name just a few).

Mr. Charters ends by schooling celebrities to “move us by either making us laugh or making us cry, but do it with a personal story or powerful acceptance speech” rather than making political statements. But, I ask, what are political statements if not the embodiment of powerful personal stories?

I think of writers, filmmakers and actors—as much as musicians, painters, sculptors and photographers—as artists. To me, the best art is at its very core political. It not only makes us laugh or cry, it causes us to be introspective, then begs us to think about the world around us and to question our place in that world. Moreover, artist-actors are role models, as Charters points out in his opinion piece by citing millions of fans worldwide who pin up their posters and pictures on bedroom walls and “wait in line for hours just to get their autograph or take a selfie.” At the Oscar's, these role models have a unique platform from which to challenge injustices in the world, hoping to inspire others to be moved into advocacy. And as celebrities, their voices amplify what millions living here and fearing this new regime experience, feel and believe is unjust and immoral.

Since beginning my blog, I've been told by an angry troll that I shouldn't use it to talk politics. I've been told by a sibling that my posts are considered too long and depressing. I'm sure I have readers who bristle when I discuss my disdain for organized religion. But I've also been told by others—many who struggle with children like Calvin—that I am their voice because they are too shy, feel unable to express themselves adequately or who fear reprisal from friends and family if they do. So by writing this blog, I am able to amplify what hidden voices ache to say but hesitate. For them and for me, I will not self-censor. Along with sharing triumphs, I will keep talking about uncomfortable, unfortunate things, all things disability and all things epilepsy. And I will keep talking politics and injustice with the hope of turning just one mind in the direction of compassion, understanding and acceptance of others who look or act or sound different from themselves.

2.20.2017

zephyrs

Back on my stump at the edge of what some here call the Riviera—the sunny edge of a sheltered field skirted by a white pine, hemlock, maple and oak tree wood—I close my eyes, resting my head against a trunk; Nellie leans into me dutifully. I sit here thawing out as the glacier at my feet recedes. Then comes my most favorite sound in the world: the rushing of wind through the tops of trees. Though it can sound a bit like distant breaking waves on a pebble beach or like crashing rapids in a canyon river, it has a unique quality, a building up from almost nothing, like hundreds of whispering voices. Inevitably, the sound of the breeze transports me back to my childhood and I remember that today, ninety-two years ago, my Dad came into the world.

Eyes still closed, I think of those old photos of Dad, tall and lean with a rippled gut and a balding head though barely out of his teens. I see pictures of him tan and towering over the other Naval cadets sporting a toothy smile, and I imagine him back at the Academy running his 4:28 minute mile. I see snapshots of him shepherding us kids at the beach, toting a fishing pole or a bucket of clams, see a faded one of us sunning at the base of a hot white Oregon sand dune.

In my mind I’m eight again, trudging onto a grey morning beach, wind plaiting my hair, damp sneakers chafing skinny feet. Dad is up ahead leading the way across the sandbar and, like a duckling, I following the dimples his steps have made. In one hand he carries a small shovel, in the other, a bucket. Clay-colored hip waders hang from suspenders off of his broad shoulders. A gossamer white t-shirt clings to his chest, catches a gust, then billows like a sail. As he gazes out past the breakers to the horizon, I wonder what he might be thinking.

Something stirs in the melting leaves nearby, breaks my trance, brings me back into reality where the light gleaming off of the snow is blinding. It’s hard to believe Dad has been gone these twenty-one years. I wonder what he’d make of my life, of our struggles with Calvin—of Calvin himself—of the regrettable sibling fuss over politics and money, of the pathetic state this nation finds itself in.


It's time to go home, so Nellie and I trudge across a vast whiteness marred by swaths of slushy tundra. I step into a pocket of water made by someone's boot. At home I find a squirrel trapped in our screen porch and wonder how it got there. I pick up pine boughs littering the yard from a recent storm. Over my shoulder the sun begins to set at a slightly higher angle, and I am grateful. Next to me, as a clock ticks away the seconds of life I can hear a zephyr rustle through the tops of trees and, just as suddenly, I am swept back to when I was two and Dad was forty, holding me between his knees.

2.11.2017

cosmic clusterfuck

A full moon, a penumbral eclipse and a green comet aligned in some sort of cosmic clusterfuck this morning. Calvin suffered his second grand mal in just four days at the exact moment—three o’clock—when the comet was closest to the earth on a night when the moon’s pull was at its strongest this month. I wondered how many of the sixty-five million people in the world who have epilepsy had seizures simultaneously.

This last reduction of Calvin’s benzodiazepine has seemed to prove hard on him with four out of the past five days marked by seizures of some sort. I try to remind myself that it was just last month that Calvin went twenty-seven days between grand mal seizures, hoping that kind of stretch can repeat.

As the seizure abated and Michael got in with Calvin, I crawled back into bed alone, and like the moon’s gravity, I felt the pull of my blog, and began crafting the first lines in my head. I had some idea, when I wrote the words so long in my last post, that I couldn’t easily tear myself away. Writing it gives me a great source of fulfillment. It’s an intimate and reliable friend, a way to connect with others when I’m so often alone in this house with a boy whose thoughts are silent and unknown to me.

And so here I am again, who knows for how long or until when. I guess it will depend upon what tugs at me, whether the full moon or some other cosmic gravity in the world.

Photo by Rob Pettengill

2.07.2017

thirteen

This morning at one-thirty, exactly thirteen years after my water broke forcing us into an ice storm and then me into an emergency C-section, Calvin had his umpteenth grand mal.

Incredibly, Calvin has made it to his thirteenth birthday. Unlike what most parents might think, the time has not flown by; caring for him has a way of slowing down the evolution of things. Moments are protracted. His development nears stasis. Our lives, in many ways, are inert. This time warp, though, is also a gift allowing me to practice mindfulness, to luxuriate in a square of warm sunlight, to contemplate the form of a shadow, to practice the Zen of chopping fruit, to study my boy and his every move, and to suspend myself in his embrace.

Today also marks six years and four months of writing this blog. Sixteen-hundred-and-twenty-two posts later I am a more fulfilled person and hopefully a better writer. In that span of time, Calvin has suffered a legion of seizures—possibly multiple thousands—ingested tens of thousands of pills, endured sleepless nights, bouts of misery, bruises and bloody noses and one broken foot. But for all his aches and pains my boy, it seems, is doing ever so slightly better with each passing day. I see it when he looks me straight in the eyes, when he makes new noises which give the impression he is trying to talk, when he accompanies me to a new store and doesn't grouse, when he pushes the grocery cart almost by himself.

This betterment I credit to our decision nearly three years ago to begin weaning Calvin off of his benzodiazepine, clobazam. He’ll be rid of it completely sometime late this year. He continues to improve as we inch toward his final dose as evidenced by his sound sleeping, improved balance and walking, his calmer behavior. I also credit the cannabis oils we’ve been giving to him since beginning the benzo wean. One is a THCA oil that I make myself with cannabis flower from Remedy dispensary, who I trust implicitly to supply healthy, safe, consistent herb for my son. The other is a CBD oil I get from the good folks at Haleigh’s Hope, who make an oil using a clean CO2 extraction method from a hybrid of high-cannabidiol strains known for their efficacy in treating stubborn seizures. My sense is that both of these oils have helped Calvin during his benzodiazepine wean by ameliorating his withdrawal side effects and/or keeping his seizures relatively stayed.

Calvin's milestones cause me to ponder my own stasis, and my itch to get back to a writing project I’ve neglected for too long. And so I’m tempted to hang up the blog for a spell so I can focus on completing the half-finished manuscript. It’s hard to give up the blog, though, even if only temporarily; It feeds my soul on so many levels, including the good mojo I get from beloved readers. So maybe instead of goodbye I should just say so long, and allow myself the freedom to check back in and post something periodically, or maybe I should change the format to be more like a photo Tweet. Who knows? In any case, I might not have the nerve to abandon it all together, so please check in, and when you do, I invite you to read older posts.

So, happy birthday my sweet boy Calvin, you who are my muse, my haunter of dreams, informer of my world. You inspire me in myriad ways. I'm so grateful to have spun around the sun next to one as pure as you.

Calvin's first day, Photo by Michael Kolster

1.30.2017

torn apart

Yesterday tore me apart. Calvin suffered seizures all day long, including two grand mals and as many administrations of rectal Valium. One dose was during a deep partial seizure that lasted long enough for Calvin’s face to begin turning blue, causing me to imagine what it might be like if Calvin died right there on the spot.

His second grand mal came on while Michael and I were changing a poopy diaper. Our boy’s body stiffened, his legs becoming rigid and twisted like drift wood. When he began convulsing I was able to insert the rectal gel and the seizure stopped soon after. We lifted Calvin’s limp body—I thought again about his death—onto the couch with Michael where they slept for the good part of an hour, Calvin’s eyes, at times, half mast. At their feet, perched on the arm of the couch, I cried, weary and fearful of what so many seizures and drugs might do to my child.

Last night I slept with Calvin, woke when he did, changed a wet diaper, gave him the water which he had refused most of the day, gave him an extra Keppra at midnight and extra cannabis oil at ten and two. At times I felt feverish and dizzy, a case of mild and temporary vertigo still vexing me some nights. 

My life must be out of balance, I thought, remembering what a doctor had told me the first time I experienced vertigo after having moved from San Francisco to Maine.

As I dozed off to sleep with Calvin’s arms around my neck, I wondered how my life might be out of balance (save raising a legally blind, non-verbal, incontinent, severely disabled child with intractable epilepsy who is the source of great angst and loss of sleep). After all, I’m grateful to have an amazing husband, a cozy home, a beautiful garden, an incredible group of friends, a supportive community and a boy who is brimming with love and affection. And, except for the challenges of being a woman living in a patriarchy, as a white person I am not oppressed. Lying there, I finally realized that a good part of the reason I feel so out of balance is political in nature, fearing the people in this country will lose many of the civil rights and liberties they have worked so hard to get.

Many of you may not know that the first of Hitler's victims were the infirm and the disabled. Yep, before rounding up and exterminating the Jews, Hitler and his band of merry sadofascists came for the disabled because they were thought a stain on his notion of a perfect race. The knowledge of this history is partly why I fear and loathe the current president, one who just put a White nationalist in one of the most powerful executive branch positions in this nation and one who has just barred good people because of their religion. 

I’ve heard people insist that not all Trump supporters are racists or bigots. But, perhaps not all Hitler supporters were anti-Semites, and yet their naiveté and silence enabled an entire people's demise. I’ve heard Trump voters, in their support of a Muslim ban, claim that ours is, and must remain, a Christian nation, and yet the first invaders of this Native land were refugees fleeing religious persecution. I've heard scores of folks grouse about immigrants, and yet we are a nation of immigrants. I’ve heard Christians complain about God being missing in our public schools and government, and yet our founders felt the separation of church and state compelling. I’ve heard Christians’ contempt for diverse lifestyles, other religions and social programs to serve the needy, ones that Jesus would no doubt champion.

Perhaps in an attempt to bring balance back to a world with a fear-mongering despot at the helm, I say to those who deny his blatant bigotry, who, like him, pit one religion against another, who've succumbed to his charlatanry, that when it comes to justice—not only for my disabled son but for everyone who is marginalized, discriminated against and oppressed—I can never agree to disagree.

And so when I tuck Calvin in tonight, knowing he'll be safe and sound in this (regrettably) mostly straight White Christian hamlet, I'll hold in my heart those who have been, or will be—by a man who now has as much privilege and power and perhaps as little compassion as anyone in the world—torn apart.

1.23.2017

larger than myself

It was an agonizing decision, but after resolving not to fly to DC for the Women’s March on Saturday, I finally felt at peace. Many dear friends and some amazing strangers, through their kind messages and words of support, helped me come to my conclusion. The morning of the march, however, I wept. I felt trapped in this little town, one which I haven’t been able to escape from for over two years. I mourned the loss of the chance to be a part of something larger than myself. Michael held me, which always makes me feel better. A few hours later, we packed up and drove south to Portland.

We parked in the sun about a block from Congress Avenue near the end of the protest route. It was a mild day for January in Maine, in the low forties with no wind. Bundled up in hats, scarves and gloves, the three of us, plus Nellie, picked a spot on the curb and watched the parade of demonstrators descend from Munjoy Hill, a handful of happy cops with their blue lights flashing in the fore.

Calvin was in a fine mood, and I wondered if he enjoyed the noisy crowd with their bright posters and chants of solidarity. For an hour and a half, a steady stream of people of all ages and walks of life, led by a young woman in a wheelchair, passed us by. We'd learn later there had been as many as ten-thousand marchers in our small city. An animated man with long grey hair appointed himself to direct traffic at the crossing. We saw dozens of friends who came up to us with hugs. It seemed everyone who passed looked at us standing with our drooling disabled kid biting the scruff of his jacket and going a little berserk at times. One woman holding a sign that read “Liberty and Justice for All” glanced down at Calvin, then smiled and tipped her head to me. I choked up on the spot at her validation of us. Michael’s eyes watered in the cold.

Nothing but waves of love and inclusiveness radiated from the peaceful crowd, and in scores of cities across the nation and in cities on six continents, millions of people marched to show their support of women, the Disabled, immigrants, Muslims, Black and Brown people, LGBTQ people, the underpaid and underserved. Some of my favorite signs read:

my rights are not up for grabs
respect existence or expect resistance
feminism is the radical notion that women are equal to men
i’m not a sign guy, but geez
leave it to the beavers
1968 is Calling. Don’t Answer
I would not want to be the guy who pissed off all these women
We are the 51%
Make America think again

Thankfully, there were few signs that referenced the man-child who took office last Friday after having issued a bleak and egocentric inaugural speech to a relatively modest-sized crowd so white I did not recognize it as wholly American. Our marches, in contrast, were beautifully diverse as America and about hope, love, support and compassion for each other, action and solidarity.

On social media the past week I fielded some questions about the marches. The queries, verbatim, were:

What do all the protesters (and we all know violence will erupt), expect to happen from their actions? Are they expecting Trump to quit? Do they think we all don't know by now their views? Why the gatherings to spew hatred? Wouldn't getting involved with local government be a more efficient use of time? And what did they accomplish?

I assertively addressed the questions—some of which had made me cringe because of the way they were worded. I was called smug and condescending. I was labeled a hopeless liberal. I had attempted to honestly answer the queries while respectfully challenging their assumptions. I had hoped to offer the insight they professed to be searching. I was met by some with scorn, which only served to strengthen my resolve.

Under a filtered sun, as the last marchers approached, my family joined the crowd as some dear friends pushed our empty stroller. Calvin, Michael and I marched a couple of blocks for women's rights and the rights of the most vulnerable in our nation. We marched for Calvin, because the current administration has appointed secretaries who would put in jeopardy Calvin's special education services and healthcare. We marched in solidarity with the majority of Americans who voted for inclusion, justice and equality, for bridges to be built, not walls. I smiled the entire time, even as I wept. My heart brimmed with the knowledge that no one can quell this massive, resistant, powerful, common voice against oppression, and the amazing sense of becoming a part of something larger than myself.

Photo by Connie Chiang