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.