freedom

It’s sunny and bright outside, the birds are chirping, shrubs are budding, flowers are pushing up. Nevertheless, my mood is dark as wet earth. This morning, Michael and I tried to walk with Calvin alongside the downtown shops, but every few steps our son balked, bending at the waist, seemingly inclined to sit. The “fresh” baguette we bought was stale. Nellie irksomely pulled at the end of her tether. Nearby children fussed and squalled, their parents gawking at Calvin while he drooled and stared at the sun.

"Why did I move to Maine?" I groused, complaining of the town's feng shui, unfairly comparing it with San Francisco.

San Francisco, where I lived for ten years, was warm and inviting, dotted with lovely vistas, pleasantly peopled in diverse ways, and pulsating with positive vibes. What's more, in San Francisco there was no Calvin.

I often return to the theme of freedom and of feeling as though I’ve got none now. Sure, when Calvin goes to school I have much of the day to myself to write or putter in the garden, to read or catch up a little on sleep, and to put the house in order. But never do I not worry about my boy or wonder if he’s fallen, if he’s had a seizure, if he’s choked on food at school. Always do I jump—heart racing—when my Calvin phone rings, fearing the worst has happened. And when Calvin comes home, I’m consigned to walking in circles in his wake, standing beside him while he bangs the bathroom shutters as he has the past ten years, or placing myself between him and any sliver of direct sunlight for which his eyes hunt with reckless compulsion.

My back is not free from lifting my nearly sixty-pound boy. I’ll likely never be released from changing his diapers, spoon feeding him, covering him at night, telling him not to bite his shoes, his kerchief, his sleeve, his books, the table, the carpet, the doors.

I’ll likely never enjoy the freedom of seeing Calvin run ahead—or toward me—or ride a bike or swim in a nearby pool. I'll likely always have to spot my son as he goes up and down the stairs. I doubt I'll ever be free to eat a relaxing family dinner without having to tend to my boy.

When—if—Calvin grows up, I’ll never feel the liberation and glee of seeing him off at the airport to visit his grandparents or attend college or travel the world.

I doubt I'll be free from worry over the next big seizure, or a spate of several within a day or more, or free from the burden of having a child who must take medication scores of times each day. I'll never get respite from the fret and fear of what might be hurting my sweet non-verbal boy.

These true freedoms don't come with a child like Calvin.

Thankfully, though, I managed to get outside today and visit a friend. I walked Nellie off the leash in sun dappled woods, delighted in the sounds of cheering students and of balls hitting bats square on. In spring air still hovering in the low fifties, college girls pranced by in frilly frocks and sandals, the boys in shorts and sneakers, celebrating an annual party weekend.

And as the sweet scent of hyacinth and pansies filled my nostrils, I closed my eyes, took a deep breath, and savored a moment that felt, at least a little bit, free.

pioneering women

Just before dawn as I slept in my boy’s embrace after an earlier grand mal, I dreamt of traffic jams, topless cars and failing brakes, of old flames neglecting my gaze and of girlfriends lost, of trolling icy bays of black and white and gray. The sky pressed down upon me, my loneliness naked and plain, and when I peered into an inky sea, an angry whale met my eye and set to fling me from my ship.

Perhaps this dream was a metaphor for life these past twelve years, especially since Calvin’s seizures first defined our world: their tendency to impede our every move, their habit to gather speed like runaway trains, epilepsy’s effect on our friendships, its nature to estrange, and the stress and dread of looming fits which shroud our every night and day.

Late last week I read a Facebook post from my friend Paige Figi, mother of young twin girls, Charlotte and Chase, the former famed for Charlotte’s Web, the cannabis oil that saved the seizure-ridden girl. Paige wrote:

Twins ... sigh. They share so much. Too much. Chase may have been named because she followed Charlotte out at birth, but she has absolutely been the leader, the caretaker, in charge. With her huge heart, she nurtured her sister through nine devastating years of seizures and all Dravet Syndrome brought to our lives.

Yesterday Chase had a seizure.

When I read her words I felt myself sinking into a murk, as if a huge stone were tethered to my feet. I pondered the unfortunate news.
 
What might this mean for Chase? Will she have more seizures or just the one? What would that mean for Charlotte? How will their family endure?

Then I thought of Paige. Some might call her Warrior, or Dragon Mom. I call her Pioneer. In Colorado several years ago, she was fighting to save her daughter's life from Dravet syndrome when, after Charlotte failed every available anticonvulsant drug and treatment, neurologists washed their hands and advised Paige to take her daughter home to die. Paige didn’t heed their call because she's fearless. Instead, she followed her gut, used her brains, checked her caution at the door and turned to cannabis, an herb that only one other American parent had openly given to his seizing child. Paige put herself on the front lines of using cannabis as medicine when the world was telling her, no.

Paige was instrumental in helping me blaze my own trail which, too, was on the cannabis-for-epilepsy frontier. She counseled me about benzodiazepine withdrawal (our children were on the same one), she directed me toward cannabis strains that might help fight my son's seizures at a time when few others were delving into the unknown. She has fought long and hard against a rigged system that maligns cannabis and would deny it as medicine for our kids, some of who are dying.

Shortly after my unsettling dream, I spoke with my friend Lauren and told her of Calvin's early morning grand mal, of how, in its aftermath, I'd given him a dose of CBD cannabis oil to see if it might stay a second seizure, and how it seemed to have done the job. I mentioned that I'd also given him his benzodiazepine two-and-a-half hours early followed by an extra Keppra upon waking for the day; All of these measures meant to derail any further seizures seemed successful at keeping them at bay.

Lauren praised my dogged efforts to eliminate as many of Calvin's seizures as I can. She told me she imagined me as the sharpshooter, Annie Oakley, conjuring up for me a western gal in leather boots and cowboy hat shredding her targets shot by shot. I remembered how I often describe epilepsy as a moving target, and so the image of a cowgirl in suede fringe, and seeing as how I'm a Westerner with a love of shit-kicking boots, seemed apt. I looked up Annie Oakley and found this description:

Her feats of marksmanship were truly incredible. At 30 paces she could split a playing card held edge-on, she hit dimes tossed into the air, she shot cigarettes from her husband's lips, and, a playing card being thrown into the air, she riddled it before it touched the ground.

And so, in honor of Paige, and all the other formidable mothers spearheading cannabis as medicine for their suffering children, I want to send the powerful mental image, and all the mojo that goes with it, of the Pioneer and her weapons: one syringe of cannabis oil at a time, blowing epilepsy to smithereens.

midnight, dawn and dusk

Sometime after midnight the moon hung in a mist of melancholia, tangled in a fanned canopy of just-budding twigs. I wondered if it were an omen; I felt its gravity tug at my psyche as if it were a black hole, and I asked myself why, because it was only the morning of day five.

I remembered that last evening I’d described to Michael my nice day with Calvin, how we’d gone to the hardware store nursery and, once Calvin figured out it wasn’t Walmart, he willingly joined me in patting purple pansies, prickly juniper and spruce and plush sprigs of lavender heather. I mentioned how, later, Calvin had taken my hand as we walked the back way through the field to the deli to fetch a gallon of milk, and how after supper he had chosen to go to Woody’s for a piece of chocolate—something he’d never before done of his own volition. I’d said that maybe it was too good to be true.

After seeing the moon last night and just before dawn, I dreamt of Calvin’s cannabis flower and how I’d left a white paper bag of it in the car. The car got towed away making me fret that the bud would bake in the sun on a hot leather seat until it was ruined. I woke myself up in a worry, out of which Michael soothed me back to sleep.

Today, for hours as clouds rolled by in waves eclipsing the sun, Calvin seized: his skin flushed, his fingers surveyed his throat, he seemed out of reach, his mouth crept into grotesque sideways smiles, his body quaked like a temblor, though thankfully not a grand mal. Five fits he had. Extra Keppra had no effect. Extra cannabidiol proved just as useless. Extra THCA cannabis oil was the only thing that offered any reprieve from the partial seizures' sorry repeat.

Now, at eight and after dusk, I hear the train's melodious call. Perhaps it welcomes a good night's sleep like the fog horn of my dear Golden Gate. I hear the whistle recede in the distance as I do every night when the house is silent and still, like my boy in his bed upstairs, like the dear and dreaded moon rising up over the hill.

walking into walls

As many of you know, spring is the time of year I usually launch Calvin's annual epilepsy benefit. This year, however, I decided to put my energy toward Parkinson's awareness and the funding of the documentary film, Walking Into Walls.

Several years ago my brother Steve and our dear friend Coleman Hough, the performance artist and screenwriter making the documentary, were both diagnosed with early-onset Parkinson's disease. I have witnessed their struggles firsthand and have listened to their stories of anguish, frustration, uncertainty and hope in the face of this devastating, degenerative disease.

Coleman's film, which has beautifully evolved, brilliantly and poignantly explores the depths of her experience with Parkinson's disease. Now, in its final stages, it needs one more push to bring it to fruition. I'm stepping in to help that fundraising effort while she heals from the second of two deep brain stimulation surgeries.

I hope many of you, and those who have donated to CURE epilepsy in the past, will choose to join this rare opportunity to help in the making of such a compelling and important film.

This film must be made. It will touch countless lives, not just those with Parkinson's disease and their families, but those of us whose lives hang in the balance of human uncertainty, those of us who are struck by life's curveballs, sending us reeling.

I invite you to watch the teaser below and to donate what you can on Coleman's fundraising page before May 15th.

Thank you, in advance, for your generous support.

Sending much love and high hopes to you all, especially Steve Shake and Coleman Hough,
Christy

If you cannot view the video, you can see it on Coleman's fundraising page by clicking here.

                   

dreams and hills and idyll roads

A recurring dream I used to have as a youth goes like this:

An infant sits alone and naked in a glen at the base of a bluff. Clouds roll like molten lava, cracks of silver light breaking through in waves. Everything is dark, has a twilight cast about it, though not like the hopeful dusks I’ve loved when warm light streams through windows, rather, with the foreboding of an eclipse. In my sleep I hear two disturbing sounds: one, the pulsing of orchestral drums, akin to thunder, throbbing like a giant’s heartbeat—mine?—the other, a tight pluck of a harp, discordant, sharp, queer. The butte is cloaked in a mossy tangle of black, green and gold, pools of miserable clay skulking in dark pockets. The fair child sits silently, as if abandoned, though not upset or crying, seemingly unaware that he is alone. A single hair sprouting from his head quivers with each pluck of the harp as the ground rumbles and quakes. At the summit of the mount looms a massive rock. Somehow, its balance upset, the stone begins to careen down the hillside, the pounding drums and fierce harp a sick accompaniment. The boulder collides with outcroppings rocketing shards of stone into space, then leaps and crashes into the next shelf, sending more. The ground trembles. The hair plucks. The boulder thunders down the jagged butte headed for the infant boy, and as the gigantic stone approaches, its looming shadow seems to linger before the rock engulfs the child’s oblivious form.

And I wake suddenly in a sweat.

Before Calvin was born, before he we knew he was a boy, I had a dream of a fair child with wild flaxen curls who had come into the world chatting away, his face close to mine like he is wont to do today. Since his seizures began, I often dream of his demise, of him trapped and seizing behind a couch, of me forgetting his seizure meds, of him choking or drowning within arm's reach. Sometimes, when I dream of him seizing, I wake up to that reality happening in the very next room.

My friend Lauren often dreams of Calvin, too. She dreams of him talking, perhaps even running and playing—all things he cannot do. She wrote to me yesterday morning:

I had a dream about Calvin last night. We were face to face and I looked into his eyes and they were cloudy, but he said to me as he grabbed my arms, "It's hard for me to go beyond a certain point."

If I were someone who studied dreams, I’d say his eyes were fogged because of anticonvulsant pharmaceutical drugs. I’d say Lauren dreamed those words because on Sunday she gave me a break and held Calvin's arm with Michael while we took a short walk down an unfamiliar road. Calvin balked and struggled against our will to lead him gently out of his comfort zone and into the larger world.

Calvin has never made strides—crawling, climbing stairs, walking distances, especially in unfamiliar places—without being pressed. For whatever reason—his brain's absent skein of white matter, the seizures, the years and scores of antiepileptic drugs, his newly detected anemia, the headaches, lethargy, dizziness, confusion—Calvin's development hasn’t advanced much past that of a babe in many ways. Like in my recurring dream, he sits so innocently, oblivious to the sometimes harsh world that surrounds him. He swims amid his brain's threatening electric storms. He's pummeled by drugs and drowns in their skulking pools. All these things impede his every move. But unlike in my dream, I'm beside him. I'm strong and able to take him by the hand, lead him up gentle hills, out into green and gleaming fields and down idyll roads where he could never have gone on his own.

thirteen minutes with khalil

This morning at two-thirty, Calvin had the grand mal seizure I’d been expecting for a couple of days. The THC rescue med I gave him didn’t seem to stop the spasms which lasted longer than of late. Seizures this early in the morning usually translate into clusters of them, and the only way I’ve found to consistently thwart them is to give Calvin his benzodiazepine early. In this case, I gave it to him three-and-a-half hours before his usual time. I agonized over the decision. Eventually, I opted to, knowing that clobazam's half-life is long, and preferring to isolate the seizure rather than subject Calvin to more of them thus requiring rectal Valium to stop the cluster.

He slept fitfully for an hour then woke in a panic—heart forcefully racing, hyperventilating, repetitive humming. I’m fairly certain these episodes are not seizures but are, instead, benzo withdrawal symptoms or perhaps even agitation from the THC. For the next two hours I got head-butted in the mouth, whacked in the eye, smacked in the nose and shoved in the throat by a unsettled kid trying to escape his malaise. Eventually, I gave him an extra Keppra, which so far has seemed to keep additional seizures at bay.

Later, while Calvin spun in his jumper, I perused the news and my Facebook feed. I came across this video that a mother posted about her son Khalil, where she relates his perilous struggle with seizures, their resistance to drugs and her hope to use non-psychoactive CBD cannabis oil to relieve him of his misery. While the video lasts a mere thirteen minutes, time expands as it appears her sweet boy is seizing the entire time while in her arms.

Calvin once had a forty-five minute seizure which didn't initially respond to a host of emergency medications. Michael and I were left helpless at his hospital bedside—knowing that the longer seizures last the harder they are to halt—kissing him goodbye just when the seizure finally stopped. Life has not been so easy on Khalil and his mother. Doctors are misinformed and guarded, ignorant people have judged and, as a result, her son has been robbed of what might be his only lifesaving measure—cannabis. While I am considered a pioneer of medical marijuana in a legal state, Brittney and her family, who live in Kentucky where it remains illegal, are forced to leave all they know and love behind and become medical marijuana refugees.

At one point in her video Brittney desperately asks, "Why does a zip code define what medicines my son gets?"

I encourage you to watch the entire video to gain some insight into one mother’s plight to save her dying child. Most folks have little concept of how difficult and unjust life can be for these kids. The best we can do is to listen, understand and advocate for those whose fortunes are not as good as our own.

Someone said to me recently during a discussion on racial oppression, God gives us all our own row to hoe; I reject that self-reliant crap. For one, if there is a God to be believed, He/She/It is not up there doling out misery. And for another, it's noble and kind to help others whose rows are on the steep side of an upward climb.

If you cannot view the video below you can view it on You Tube here.

                     

haleigh's hope for calvin

Last month, just prior to Calvin's six-day seizure spell, we all enjoyed his longest grand mal seizure-free stint in over a year: twenty-one days. I should clarify that I am counting days between grand mal seizures, since those are his most violent and obvious ones. His partial complex seizures, which began appearing again late last year in the wake of his grand mals, are often difficult to discern and sometimes I wonder if I am mistaking them for benzodiazepine withdrawal symptoms such as rapid heartbeat, hyperventilation, hallucinations and agitation.

A few things might have contributed to the somewhat long stretch between grand mals (over twice as long as of late): we paused Calvin's benzodiazepine wean for several weeks which might have given him a temporary reprieve; we increased his bedtime Keppra, partially to account for weight gain but also to see if it might reduce his number of seizures; I switched Calvin from my homemade CBD oil, which I'd run out of, to a new one called Haleigh's Hope. These last two moves I had to make almost simultaneously, which meant that I introduced two variables at the same time, something I am loath to do because additional variables makes it more difficult to ascertain what is at play when symptoms wax or wane. My gut tells me Calvin's longish stint was likely due to the increase in Keppra, mostly because we have seen notable improvement in the past when we have upped his dose. But suffice to say he doesn't seem to be suffering ills from using the new CBD oil and it could be helping.

The new oil, Haleigh's Hope, is a high CBD (cannabidiol) product from Colorado. I heard about it when a Facebook friend began using it to treat her child in New York State. Her daughter enjoyed several months of seizure freedom after her first dose of the oil. I contacted the maker to ask questions about the oil so that I could compare it with other products on the market. What I learned was that the oil has the same ratio of CBD to THC—20:1—as the CBD oil I've been making for Calvin. Initially, I thought Haleigh's Hope was made from the same cannabis strain as I'd been using, one called ACDC, but I must have confused it with another high CBD oil I'd been researching. Instead, Haleigh's Hope is made from a hybrid of Pre 98 Bubba Kush (high CBD Cannabis Cup winner), Cannatonic and R4. Another reason I chose Haleigh's Hope is that its makers employ a CO2 extraction method which captures all of the terpenes and cannabinoids without leaving trace constituents such as alcohol or chlorophyll. Moreover, one of the base oils they offer is unflavored organic MCT (medium chain triglyceride) coconut oil, which is nearly identical to the one I use that holds the cannabinoids in suspension requiring little to no shaking of the liquid, though I've made a habit of it anyway. The extra strength version of Haleigh's Hope, which is a beautiful amber color, has 40 mgs CBD/ml of oil—again, nearly identical to the strength I've been making for Calvin for over a year, which made dosing easy.

All of these properties informed my decision to choose Haleigh's Hope over other CBD oils on the market, and the transition has appeared seamless. Today is day eight since Calvin's last seizure, which isn't a record, but I'll take it and hope for more.

I've said before that it is yet unclear if CBD is helping to reduce or stay Calvin's seizures; he's still on a relatively low dose. My homemade THCA oil, however, seems to have made an impact; since starting it two years ago, Calvin's daytime tonic-clonic seizures have vanished—his last one was 300 days ago and he's had only one in 580 days. Prior to starting THCA he used to have daytime grand mals every week or two, often while taking a bath. The daytime dosing of THCA oil has consigned Calvin's grand mal seizures to the night when he is safe in bed, and though he still has three to five every month, that is no more than the number he averaged two years ago when he was taking ten times more benzodiazepine than he is today. What I do believe, though, is that the CBD isn't hurting Calvin and may even be helping to buffer his protracted benzodiazepine withdrawal. This is why I've decided to keep him on CBD, at least for the next year or so until Calvin is completely off of the clobazam.

Recently, I've been contacted by several mothers asking for guidance about benzodiazepine withdrawal, specifically clobazam, aka Onfi, and/or cannabis use. I advise them as best I can, because I can, and because so many wonderful folks spent hours of their precious time counseling me. What I usually tell them about Onfi withdrawal is to first switch from the pill to the liquid form and to go uber slow—decreasing only five to ten percent of the overall dose every two to four weeks or more, depending upon severity of withdrawal symptoms, and to read the Ashton manual. These are important facts that neurologists don't seem to know. What I tell folks curious about cannabis is that THCA can be as effective as CBD, the only caveat being that pre-made THCA oil is more difficult to get; most makers won't ship the oil out of state. So, though I'm a true THCA believer, I sometimes advise parents to try CBD first since it is fairly easy to get no matter where you live and, if it doesn't work, then I suggest trying non-psychoactive THCA or even bits of THC.

If you are interested in making THCA cannabis oil, it is easy as pie, and you can read about the process here.

And as far as Haleigh's Hope for Calvin, I've crossed my fingers and knocked on wood. So far, so good.

it is what it is

Buds, photo by Sarah Korsiak Cellier