here and there and in-between

Tommy Orange. That's the name of the young Indigenous American who authored the novel I'm reading called There, There. I'm only a couple of chapters in, but already I'm engrossed with his artful storytelling of people and place. A native of Oakland, California, where his story unfolds, Orange references a quote by Gertrude Stein in which, on a return trip to her beloved Oakland forty-five years after first having left it, she describes with painful childhood nostalgia that "there is no there there."

Stein lamented that Oakland was no longer a place where a child “could have all anybody could want of joyous sweating, of rain and wind, of hunting, of cows and dogs and horses, of chopping wood, of making hay, of dreaming, of lying in a hollow all warm with the sun shining while the wind was howling.”

In Stein's mind and in reality, the place had changed, as all things inevitably do. But my sense is that modern Oakland's inhabitants, like the ones in Tommy Orange's novel, believe there remains much "there," there, though perhaps of a different kind.

I was reminded of Stein's quote when I read a meme a friend of a friend had posted on social media. The manifesto read:

Welcome

You came here from there because you didn’t like there, 

and now you want to change here to be like there. 

We are not racist, phobic or anti what-ever-you-are, 

we simply like here the way it is and most of us actually came 

here because it is not like there, wherever there was. 

You are welcome here, but please stop trying to make here like there. 

If you want here to be like there you should not have left there to come here, 

and you are invited to leave here and 

go back there at your earliest convenience.

The little blank box below the meme compelled me to comment. I first noted how ugly, poorly written, racist and xenophobic the manifesto is. I should've added that is it hypocritical. I protested the meme's perceived targeting of Black and Brown immigrants and refugees (Midcoast Maine is home to a growing number of African immigrants, particularly from Somalia). I went on to state that people come here fleeing war, famine, poverty, oppression, violence and genocide, not to seize this nation like its first colonizers did—settlers who sparked a bloody pogrom of its Indigenous. And I condemned the use of the term "what-ever-you-are" (tellingly, not "whoever-you-are") as a bigoted one.

The only constant is change, I said, the places in which we live in perpetual flux. I asserted that immigrants help us see the world through new eyes, challenging our assertions and our view of the status quo and, perhaps, encouraging us to see how we might become better people through love, compassion and charity for others who are different from ourselves. Diversity is strength, I added, variety the spice of life.

Regrettably, rather than engage in discourse, embellish, defend or concede their stance, the person who shared the meme blocked me. Initially I regretted that perhaps I'd been too harsh. 

After posting my comment to the meme, I learned it had been defended as simply a remark to people moving here from nearby states. The argument seemed flimsy at best, duplicitous at worst, so I did an image search of the meme to see what more I could glean. I found American flags posted in the footers of the memes along with warnings such as, No amnesty! Go back to the shithole! Go back to Suckistan! These sentiments confirmed for me the meme's intended target: those who are far from your average Vermonter.

Pondering it further, and looking to Calvin and his disability to inform, I'm reminded of the ways in which some strangers gawk at him. I remember the way I felt—and sometimes still do even after living in Maine eighteen years—like such a foreigner here. It's in the way some folks are watchful and guarded, the way we—as adopted San Franciscans—don't always fit into the literal and figurative landscape which, in certain time and space, can be sober and conservative. I realize that, even if the meme-manifesto were speaking only to people from other states, it's still an unwelcoming, protectionist, hidebound dispatch. It still says, "Stay away!" and "You're not like us!" and "You're not welcome!" and "Go back to where you came from!"—each caution a far cry from the road sign staked in the shoulder of the turnpike upon entering Maine which says to residents and visitors, "Welcome Home."

And as I read and transcribed those postings, I recalled the same hateful rhetoric which spews and echoes from the White House. Those sentiments do not embody the America I love, nor the one I'm proud of. And I realize folks who isolate themselves, who are averse to change and who have qualms with others are fearful of the unfamiliar and unknown. But I'm grateful for this ever-changing nation, and of new neighbors from faraway places. I'm grateful for the here and the there and the in-between.

what to do?

I'm at a loss. Not sure what to do to lessen Calvin's seizures. It's not that they're raging off the charts, at least not for him; relatively speaking they are holding at about the same number that he's had the past several years, which is about five or six grand mals per month plus a smattering of focal ones. But because of them he's missing too much school. Since starting in September, he has been absent for a total of nearly four weeks. So the status quo is not sustainable. I have to change something, but what? I do not know.

I can't decide whether I should increase his CBD oil or remove it for a spell. I don't know whether to replace it with a plant-based pharmaceutical version of it called Epidiolex. I'm not sure whether my latest batch of homemade THCA oil is as effective as the last one, or if I'm giving him too much, too little. I'm loathe to try any other traditional pharmaceuticals since, having already failed ten of them, the chance Calvin will respond to subsequent ones is minute, i.e. less than five percent.

I wish I had a crystal ball that could tell me what to do.

Thankfully, Calvin has been much easier to care for these days. He's been calm, cuddly and compliant—opposite of the way he was when he was drugged up on high doses of three powerful pharmaceuticals which suppressed, though did not stop, his seizures. Nowadays, keeping him home from school in itself is not as much of hardship as it used to be, it's just happening too often and it means I can't get much of anything done—can't read, can't write, can't walk Smellie, can't exercise, can't grocery shop, can't do chores.

Today will be Calvin's first, hopefully full, day of school this week. He's not even halfway through the month and he's already had four grand mals and at least two focal seizures. Something has got to give. I just don't know what that something is.

Photo by Michael Kolster

the terror of decent people

The wind through the trees speaks to me, each leaf part of a collective voice, each a palm, each a map of sorts to a larger world. These living beings know what to do, know what freedom means. Seeds travel on breezes and in the mouths and bellies of birds. Trees put roots down in fertile soil. Geese and butterflies migrate legions of miles. Seas intermingle. Grasses cross natural, manufactured and imagined divides. Rivers breach levies. Clouds rain down quenching all creatures. Nature knows no boundaries. Why should we?

After Calvin's unexpected grand mal at dinner time Saturday night, after we wiped a stream of blood running down out of his mouth, I sat on a stool next to his bed and watched him breathe. I pondering the state of the nation we're in, where blood is shed in massacres which are happening with increasing frequency. Studying my boy's maturing face, I recalled what Frank Borman, Apollo 8 astronaut, said when feasting his eyes on blue Mother Earth from space:

When you're finally up at the moon looking back on earth, all those differences and nationalistic traits are pretty well going to blend, and you're going to get a concept that maybe this really is one world and why the hell can't we learn to live together like decent people.

—Frank Borman, Apollo 8, December 1968

And then, while bitterly lamenting racist despots and White supremacists and the atrocities they commit, I reflected on what the seventeenth-century Dutch physicist, mathematician and astronomer said:

How vast those Orbs must be, and how inconsiderable this Earth, the Theatre upon which all our mighty Designs, all our Navigations, and all our Wars are transacted, is when compared to them. A very fit consideration, and matter of Reflection, for those Kings and Princes who sacrifice the Lives of so many People, only to flatter their Ambition in being Masters of some pitiful corner of this small Spot.

—Christiaan Huygens, The Immense Distance Between the Sun and the Planets, 1698

And yet, on this small spot of glorious planet we share with nature and the rest of humanity, we have an epidemic of Right Wing, White Supremacist terrorism. It's motivated by the erroneous, bigoted and dangerous notion that ours is a White, Christian nation, and inspired by a reckless president bent on maligning People of Color meant  to rile up his base, pitching one struggling human against another while he tweets indignities from his gilded toilet seat.

I think of how these hateful people speak of and treat others who are their mirror image, save what's in their hearts and the pigment in their skin. I hear and read deplorable rhetoric about refugees spewing from fanatical mouths, words like "alien," "animal," "thug," "infestation"—no way to describe decent, loving, striving human beings. Where has our collective humanity gone? It is being poisoned by a fearmonging "leader," a tyrant, liar and thief who preys upon the ignorance and anxiety of people who feel they need someone else to blame.

How foolish to believe that anyone on this hunk of land, one which was stolen from its natives in a heinous genocide, can somehow feel entitled to decide who has the right to call it home.

Yesterday, I watched a video of a Black American with long dreadlocks being harassed by a White police officer in the front yard of his own home. It was a case of mistaken identity. Watching and listening, I heard the anger in the man's voice and the fear in his wife's. History has proven that any false move by the Black man could've resulted in the cop gunning him down. I've seen so many of these kinds of videos I've lost count—White cops shooting decent Black people. White cops and civilians harassing Black men in cars. Black men on sidewalks. Black men picking up garbage outside of their apartment building. Black boys playing in parks. Black men, women and children going to church, having a bbq, entering their own homes, walking across their college campus, sleeping in their dorm’s common room, waiting for a subway, mowing their lawn, entering their apartment building, going home from a pool party, driving to work, crossing a street, waiting for a friend in a Starbuck’s, shopping at Walmart, walking home.

And if you haven't read or seen James Baldwin's, If Beale Street Could Talk, you should; in its words and scenes, you will feel the terror of decent Back people.

These White Nationalist racists have launched an assault on the rest of America, on decent people's freedom to move and to safely exist in our personal and public spaces. They are driven by the fear of being replaced by people who've born the brunt of centuries of White state-sanctioned slavery, family separation, rape, forced labor, harassment, racial profiling, police violence, arrest, incarceration, exploitation, discrimination, marginalization, segregation, disenfranchisement, and demonization.

But as sure as the trees speak to me through the whisper of wind, as sure as the tides flow and recede, the world is evolving, its natural and imagined borders forever changing. Its people put down roots where the ground is most forgiving. We cross divides in search of liberty. We intermingle like the seas. We suffer and triumph and love and bleed the same. Each of us is a leaf on the same tree. We have room enough to shelter one another, and to let each other breathe.

Carolyn Cole / Los Angeles Times

changes

The kid we have now is the kid we will likely have in years to come. With few exceptions, Calvin is the child he was five, ten, twelve years ago. He still wears diapers, still can't talk, still whines and coos, still spins in his jumper, still crawls on the ground, bangs shutters, bites rugs and stares at the sun.

He still takes medicine and endures scores of seizures every year.

This weekend, however, marked another personal best: Calvin walked with me and Nellie nearly a mile—down and back from Lauren's house—with a brief break to sit and drink some fresh, unfiltered apple juice with Lauren. Calvin has walked to Lauren's only twice before, though he has never walked back. Having said that, Calvin still pulled his usual antics of trying to drop down every few yards once we got about halfway to her house. I'm ashamed to say that my friend Stephanie, having seen me struggle outside her house came out and helped me with Nellie, had to witness me cursing my exasperating situation. Thankfully, like a rental horse returning to its stall, Calvin exhibited little stubbornness on the walk back home.

Sunday was a repeat performance; Michael and I took Calvin and Nellie to Portland where we strolled several cobbled blocks with a compliant child. It was the first time we've visited Portland without having brought Calvin's stroller along.

In pondering these recent milestones, it seems that with each passing month since his last dose of benzodiazepine Calvin's stamina improves. Perhaps, too, taking less Keppra, by virtue of his weight gain, probably helps him too. Additionally, the reduction of his THCA cannabis oil seems to be helping him have less agitated afternoons. Moreover, the addition of Palmetto Harmony CBD oil, unlike other CBD oils he has tried, appears to be reducing his seizures overall; since starting it in late June, Calvin's monthly grand mals have gone from six to eight down to four or less. If Calvin continues on this positive trajectory, he'll have fewer seizures this year than in any year since 2014 when he was taking way more medication!

So, though the kid in the video below, which was taken just before his eighth birthday (he is now fourteen), is heartbreakingly much the same as the one we know and love today, I am deeply grateful he is doing better in terms of behaviors, stamina, understanding, sleep and seizures. And though my kid isn't riding bikes, competing in sports, writing essays, planning for college—on the contrary can barely push a doorbell—I embrace and consider his tiny milestones as significant and positive changes.

              

changes

It couldn't have been clearer to me that Calvin would have a seizure by this morning. In his own way, he tells me. I just have to watch and listen. Yesterday, he showed nearly all of the usual, and some not-as-usual, harbingers: bloody nose, whininess, major finger snapping and other repetitive behaviors, pacing, warm hands, uber-rashy butt, agitation, restlessness, intensity, detachment.

At five a.m. it came. Perhaps the extra doses of concentrated THCA cannabis oil just past midnight and at three o'clock impeded its arrival. As I spooned with him after the seizure, I felt how calm his body was, noting the absence of what I call aftershocks—shivering and shudders which often occur in the wake of grand mal seizures. I had no doubt THCA had something to do with his serenity.

Mostly awake since three and therefore exhausted, I still had a hard time relaxing my mind. Lying there, again I considered the world. I feel it going through its own convulsions, having more than its share of anger, hatred and greed, its racists, abusers, tyrants and liars bent on destroying humanity at nearly any cost, lusting for power through intrigue, attempting to avoid capture. What drives these men to such extremes, these gun-toting terrorists, abusers, trolls and bots, these conspiracy theorists, these despots and deceitful oligarchs? Meanwhile, in my arms lies one of the purest souls on earth, a boy who inspires love and compassion, requires my mindfulness and who, though he tries my patience at times, makes me want to live simply and be a better person every day.

Yesterday, when reading about the Marjory Stoneman Douglas high school students traveling to the Florida state capital to express their desire for the legislature to pass stricter gun control laws, I thought about Calvin. I imagined him being crammed into a closet with twenty others his age, little room to breathe, waiting silently for ninety minutes until the shooter fled the scene. I imagined Calvin—if he were a typical kid—fearing for his life, texting us, being riddled with bullets or sobbing when finally set free. I imagine him, later, boarding a bus with his classmates to march on state capitals and Washington DC demanding changes to gun policy. He'd be that kid. He'd change the world. No doubt he has, in his own way, inspired such things in others and in me.

A former teacher—one who has never met Calvin nor could comprehend the depth of his disability, who had no children of his own much less a non-verbal, incontinent, uncoordinated, delayed, epileptic one—once asked me why I named my blog Calvin's Story, or rather, why I didn't write more often from my son's perspective since it bears his name. I recall being slightly irked and thinking, perhaps even saying to him, that Calvin informs my world, and since he lacks the ability to speak, I must lend my voice to tell his story—which, because we are so inextricably linked, is ours—the one he might have told if he had been born normal. In short, I have to dream. I revisit that question from time to time, checking in with myself to ensure I am doing justice to Calvin's unusual and complicated childhood experience, exploring notions of my own with regard to him hoping I can extract some meaning from it—which is not to say I am searching for answers as to why he was born so afflicted. (Shit just happens, with no inherent reason, no purpose. Prayers prove useless, the absence of God in schools a lame excuse for mass shootings; pedophile priests still lurk in churches.)

This morning, I considered our children's truths and stories as told by themselves and their parents when I heard a former GOP congressman expressing doubt that the teenagers organizing a nationwide rally against guns—thinking the students incapable because of their youth—are doing so of their own volition. Instead, he suggested that they are mere pawns of leftist organizations. Clearly the response was from someone too detached to understand young, informed, impassioned minds, or too partisan, ignorant or cowardly to think, appear or admit otherwise. His lame statement led me to recall the David Bowie lyric I read yesterday from his song Changes:

And these children that you spit on, as they try to change their worlds, are immune to your consultations, they're quite aware of what they're going through.

I went on to ponder the right-wing conspiracy theorists who've shamefully suggested that the Florida school shooting, along with the Sandy Hook massacre, was a government ruse and that the students are actors. I wonder what in the hell these losers, jerks and trolls want to do to the virtuousness of the world. I can only hope, and work, to squash them all and liberate the truth, and soon.

And so, as my son spasms, so does the world. But there are elixirs. There is cannabis to fight seizures, there are fathers to soothe and mothers to spoon, there are parents and educators teaching their kids honesty and virtue even in—and perhaps owing to—the absence of god in schools, because it is very simply the right thing to do. There is love to conquer hate, knowledge to erase ignorance, truth and fact to crush lies and rumors, compassion to smash fearmongers, misers and fools, virtue to rule over vice, and the voices, bodies and ballots of youth to enlighten, change and lead us, to liberate and save a convulsing world.

looking back

In May of 1995 I was thirty-one and living on Ashbury Street in San Francisco, a block and a half up from Haight. I’d just dumped my compulsive liar boyfriend of five years and moved from a tiny downtown Murphy-bed studio into a gorgeous, empty 1400 square foot Victorian flat with my dear friend Seti. It was one of the best years of my life. I had black hair and clip-in extensions, wore a little lipstick, was in some of the best shape of my life living in a city meant for me.

I’d just taken a thrilling five-day paddle-boat expedition down the raging Colorado River in the Grand Canyon, had begun realizing a lifetime dream of designing clothes, was driving a 1967 Ford Mustang 289, living footloose and fancy free below a couple of goofy guys—artists both—whose apartment adjoined ours by way of a backyard garden staircase that lead up to a deck overlooking Golden Gate Park to the blinking red tip of the Golden Gate Bridge and out to the Pacific Ocean.

Yesterday, Seti’s former boyfriend, Tunç, sent me some old video he’d taken of her and I that May walking from our apartment down Ashbury Street toward a favorite Haight Street restaurant called Cha Cha Cha. Watching the video cracked me up, seeing the two of us ham it up for the camera, seeing the love I had for my friends, for the city, for life.

Weekday mornings, just like everyone else, I had to wake up, get dressed and go to work, after which I’d take an outdoor swim, come home and cook dinner, eat it, with or without Seti, but always with a glass or two of red wine facing a rolling bedroom fire on a fake Flokati rug. Then, I’d put on some jazz, sit down at my drafting table and sketch until at least midnight. I had no other responsibilities besides paying the bills. I could come and go as I pleased, travel when I wanted to, visit family on a whim, go off adventuring with newly befriended strangers, stay up all night if I wanted to. My weekends were free to dine out or stay in with friends, host parties, browse vintage stores and flea markets, nap in Golden Gate Park, hike Mt. Tamalpias, snake along the coast to Stinson Beach, dress up in a sleeveless, plaid polyester pantsuit to dance with a bunch of buff, shirtless men in the back of a flatbed truck during San Francisco’s Gay Pride Parade, ride out to Ocean Beach, sunbathe nude at Baker, drink wine and listen to live music at the Beach Chalet or Yoshi's or EOS or Firefly, eat Indian and Ethiopian and Italian and Thai and Dim Sum and Mexican and French and Cajun and Californian Infusion cuisine.

After watching Tunç's videos while icing a sore back, I took my tired self upstairs. I grieved the loss of my former life to Michael. “You’ve got a lot more to take care of now,” he said softly. I looked at my nude body in the mirror, which has thickened some since then. I asked myself, had I known then what I know now, would I have wanted to have children?

As I write this, having just spoken to Seti on the phone from Los Angeles, I realize I still have the important stuff of life, even if I don't have some of the luxuries. I have Seti, I have Michael, I have Calvin—the best person I know—I don't have my dad but I have my mom, at least the essence of her, I have my siblings and a new family, I have love and laughter and my health and a beautiful home, wonderful friends near and far, a great community, a gorgeous garden, a place to make art, to write.

Perhaps I'm just trying to make myself feel better, to justify away my sadness at the loss of such freedom, but maybe that freedom was somehow hollow, or contrived, or stuffed with things that didn't matter, like hair extensions, fast cars, tight bodies, fried calamari. (Okay, nix the fried calamari from that list.)

Looking back, maybe I've just traded what was a broad life for a deep one. And, hopefully, nineteen years later, I'm still mostly me.

gleaning green

The speed at which information can be gleaned astounds me. A little over a year ago I first began comprehensive research into medical marijuana for the treatment of epilepsy. Subsequently, I asked Calvin’s neurologist whether she thought we should consider trying it for Calvin since ten antiepileptic drugs and two dietary treatments had failed him. She dismissed the idea citing that there was no hard and fast evidence proving its efficacy and that it remained illegal at the federal level. Less than six months later she was testifying before the Massachusetts Department of Public Health on the benefits of medical marijuana for treating medically refractory epilepsy.

Several months after our visit with her, we took Calvin to see a new neurologist in Maine. When I broached the subject of medicinal cannabis, he too dismissed the idea, citing similar reasons, that there were no double-blind placebo studies proving its efficacy. Cynically, he added that if he were to prescribe medical marijuana then everyone and their uncle would be coming in for a prescription. To promote the green treatment option, I even asked a dear friend, who was bringing her disabled son in to see the neurologist later that week, to press him on the idea as well.

Calvin’s pediatrician, on the other hand, was all ears. She and her nurse practitioner sifted through my copious emails on the subject of medicinal cannabis. I forwarded TED talks and weed documentaries and testimonial videos and newspaper articles and surveys, all of which showed compelling evidence that medical marijuana works to help control seizures in children with medically refractory epilepsy while causing little to no side effects besides, perhaps, drowsiness. These anecdotes also described improvements, not only in seizure frequency and severity, but in behavior, appetite, focus, clarity, sleep and coordination. I hooked up Calvin’s pediatrician with a local DO who regularly prescribes medical marijuana, and who gladly imparted his knowledge. I got Josh Stanley’s email, the man behind the successful strain of high CBD (cannabidiol) cannabis, Charlotte’s Web, named after the child who has had near miraculous results from its use, and I gave it to Calvin’s doctor. The two of them corresponded. She spoke with Calvin’s neurologist on several occasions hoping to persuade him to endorse the treatment for Calvin. He’d since received Calvin's former neurologist's testimony on the subject and he decided to sign a letter of recommendation for our son.

During the next several months and into autumn, I read and researched and networked online trying to find a high CBD strain of medical marijuana in Maine or in a neighboring state. A friend recommended a local organic grower willing to grow and tincture for us. I’ve spoken with dispensaries and doctors and growers and caregivers. In the past couple of weeks I’ve learned that a non-reactive (non-psychoactive) medicinal cannabis tincture rich in CBD but not necessarily low in THCa (preserved in its acid form by not heating) can be beneficial to patients with epilepsy. I’ve connected with these compassionate caregivers and have exchanged emails and phone calls hoping to understand their process of tincturing, which according to them renders effective results for patients with medically refractory epilepsy while—not unlike the Charlotte's Web growers purport—claiming to be non-psychoactive. I introduced our potential grower with the experts in this particular field of tincturing, hoping that they can speak to each other this week and perhaps get the flower into tincturing very soon since the strain, one called Cannatonic, is ripe for harvest at our grower's location.

For now, I am still waiting for my caregiver license and Calvin’s patient card to come back in the mail from DHHS. Hopefully, I’ll be visiting the grower to see his operation soon. Local labs where the strains and tinctures can be tested for content will soon be up and running and I am expecting to see some sort of breakdown of possible costs from the grower when I speak to him next.

All of this has been a big undertaking, sprinkled with thousands of Facebook posts from anxious parents in similar situations thirsting for information, an equal number of comments advising the best methods, time spent meeting with other moms and spreading the word, interviews with journalists and photo ops not to mention writing the blog and the day-to-day care of a child with a chronic illness who can’t do anything for himself.

It all reminds me of a blog post I saw recently, discussing the question that stay-at-home moms often get from other women which is, "What do you Do all day long?" For now, I am gleaning green, sisters, gleaning green.

photo by Michael Kolster

thank you chellie

When I wrote to President Obama last week asking him to do what he can to legalize the use of medical marijuana at the federal level, I also sent similar letters to our Maine Senators Angus King and Susan Collins and to my Representative, Chellie Pingree. The letter below, which got stuck to its envelope and torn—its broken sentences which I transcribed onto the raw tear—is her response.

Thank you Chellie, for your efforts on behalf of our children. Take it all the way!

a little weed

Having not had much of a history with it, in the year leading up to my father’s death during his prolonged battle with cancer, I smoked a little weed nearly every night. It relaxed me, lifted the load a bit. At times it helped my mind wander to more pleasant thoughts, while at others it allowed me to sink into my grief: something I found essential to coping with the gradual loss of him. He’d been fighting the disease for years, chasing it with regular bouts of chemotherapy which wasted him away by the pound until he was little more than a six-foot-four rack of bones. Near the end, to help alleviate his pain, he was high—or should I say low—on morphine much of the time. I barely recognized him, his eyes like black saucers staring into oblivion, his skin bland and puffy, his countenance flat. I'd recommended to my mother that dad try eating some weed to help relieve his pain and nausea and, surprisingly, she'd considered it, though he died before we had a chance to try.

When I smoked pot I never felt dizzy or headachy or nauseous. I had no trouble with coordination or balance, no double-vision, no vertigo, no tingling, no pain, no weakness, shortness of breath or loss of appetite. I wasn’t aggressive or agitated or irritable or anxious. I was simply relaxed and perhaps, at times, a little sleepy. And when I stopped smoking it after my father died, I suffered zero withdrawal.

Since eliminating one of Calvin’s three antiepileptic medications, rufinamide (Banzel)—one that didn’t appear to be effective and was causing him extreme hyperactivity—he’s had an increase in seizures to the point of occurring nearly every week. A relatively new drug, rufinamide was studied on a small group of children with Lennox Gasteau Syndrome (LGS) so its addictive nature remains unclear. But after its elimination, when Calvin suffered his first nighttime seizures in years—back to back—I panicked and increased one of his other two meds hoping to keep the seizures at bay. So far we’ve seen no benefit, rather a child who is bouncing off of the walls seemingly due to the increase in benzodiazepine (clobazam).

If the seizures don’t abate, we have three choices. We can do nothing and hope they don’t worsen, which is unlikely since epilepsy is a progressive disorder. We can add a third drug back into Calvin's regimen, which will most assuredly cause him to suffer some combination of worsening headaches, dizziness, gait ataxia, double vision, blurred vision, fatigue, vertigo, tremor, somnolence, aggression, agitation, hallucination, insomnia, psychotic disorder and pruritus, to name a few. Or, we can make good in our quest to find the right strain of medical marijuana for our little lamb, one that has a high cannabidiol (CBD) content and a low tetrahydrocannabinol (THC) content so that he won't get high. But if we choose that route, because of federal law we'll find ourselves trapped within the borders of the state of Maine living in fear of any future diehard administration that might sweep in and outlaw its use. If any tincture of this plant were to reduce or control Calvin’s seizures to the extent we could lessen or eliminate his pharmaceuticals—like it did for Charlotte Figi—if it were taken away Calvin could suffer a prolonged and lethal seizure.

So, we remain boxed in by seizures, shackled by pharmaceuticals and crippled by priggish, deceptive, propagandized laws about medical marijuana—a plant known to save the lives of children who have catastrophic epilepsies and shows evidence in helping conditions such as autism, arthritis, cancer, Alzheimer's, Parkinson's, MS, migraine and diabetes. So you can see why I'm determined to help change this harsh landscape which is epilepsy. All it might take is a little weed.

Dr. Sanjay Gupta joins Josh Stanley at the Realm of Caring in Colorado

neurontinkering

Written by Julianna

From the time I was about five until my 19th birthday, I had seven or eight seizures a month. In the futile quest to stop my painful hallucinations, I have been on and off of epilepsy drugs for years—long enough to forget who I am. I have been on Phenobarbitol (lowered my IQ), Tegretol (made me balder than the 50-year-old man in the “before” pictures in Rogaine commercials), Keppra (made me depressed), Topomax (made me stupid), Lamictal (made me feel out of my body), Neurontin (made me perpetually tired) and Vimpat (made me feel like my mother must have during menopause.) I make light of some of the many side effects I experienced because, to be honest, it is hard to write about the pain anti-epileptic drugs have caused me. But I will try.

Two years ago, I had epilepsy surgery; I had about five centimeters of my right temporal lobe removed with the promise that, if all went well, I would come off of my medications. Last year, I was weaned off of Neurontin. I don’t think that I was entirely sure of the effects of that drug on my energy level when I was on it. That is one thing about medications: your mind always wants to blame itself. “God, I’m such an effing teenager. I’m always tired.”  I slogged through my freshman year of college, planning out exactly how I would get ten hours of sleep a night amid my four classes, orchestra, research, community service, and of course all the things that come with having epilepsy (including weekly therapy and medical tests). When I finally came off the Neurontin, I was astonished by the amount of energy I had. I felt like the energizer bunny, simultaneously excited and scared by the amount of energy I had. I felt like I imagine people with bipolar do at the edge of mania—creative and buzzed. my My GPA rose. I was thinking more clearly.

Currently, I am decreasing my dose of Vimpat. I am scared out of my mind because I am staring one of my worst fears in the face: that I will discover that I am a different person off of the antiepileptic drugs. The six months prior to my surgery were miserable because I was obsessing over the decision to remove part of my brain. The six months after were difficult because I was stuck in a state of post-trauma, constantly thinking of the pain and fear that characterized the previous year.

Now, off of much of the Vimpat, I feel like my previously cyclical thoughts have straightened. I ruminate less, I think more. I have more time and energy because I am not spending it crying like I used to when the drug made my emotions uneven. Even my voice sounds different. Despite being recognized for my intellect (I have received honors at Vassar College and have been a research intern at Mass General Hospital and Columbia), people used to occasionally ask me why I interjected with “like” when I spoke in public. I tried hard to stop using placeholders, but never could manage to. Now I know that the medication was making it so that my words were just slightly delayed behind my thoughts. Now I sound more confident, more direct, more articulate. And this is only after decreasing my medication to half its original dose.

To put everything in perspective, Vimpat—this medication that changed my personality—was my favorite of the more than ten drugs I tried. It was far superior to Keppra, which made me depressed, and Topomax, which temporarily convinced me that I had no intellectual future. I flunked out of my eighth grade English class and (when I couldn’t memorize Puck’s lines in A Midsummer Night’s Dream) convinced myself that I was never going to college. I cried as I studied Latin words because I couldn’t remember them, only to be informed by a past epileptologist that neurologists referred to the drug as Dope-omax. And none of those ten drugs stopped my seizures. Can you imagine any other disease in which it would be acceptable for medications to fail 30% of people with the problem? Or a disease in which life-changing side effects were not only accepted but expected? This can only be attributed to societal misunderstanding that pardons pharmaceutical company apathy and a general lack of awareness in the medical community.

Be part of a public that understands. Let’s be the generation that says, “it is impermissible to lose years of your life to a drug that is prescribed to save it.”

Julianna and a friend advocating for epilepsy awareness

change

Not everything that is faced can be changed, but nothing can be changed until it is faced.

—James Baldwin

photo from http://www.rageagainsttheminivan.com/2013/07/why-im-encouraged-after-trayvon-martin.html?m=1

love, no matter what (video)

In 1989 I met a handsome Brit named Ian. He led the down-to-earth photo safari which my brother and I enjoyed in Kenya and Tanzania that year. Ours was a brief romance but we stayed in touch for years and I revisited him in Kenya a decade later. To this day we still correspond. Now, he and his smart, beautiful wife Maggie and their two young sons run Wheatland Farm, an ecotourism destination in Devon, some miles southwest of London.

Yesterday, Ian sent me this video, which features Andrew Solomon, author of Far From the Tree, (which is awaiting me on my night stand) along with a message that read, "This one made me think of you ... it's very worth listening to."

I hesitate to say much more about the video besides the fact that it is clear that my dear friend Ian knows me well and that the message in this video is beautifully, poignantly profound, particularly—perhaps—if you are a parent. I highly encourage all of you to watch.

Coincidentally, and especially considering the nature of the video, when I googled Wheatland farm I found a Virginia farm of the same name that caters to children with special needs.

Thank you, Ian. You continue to touch many lives.

If you cannot view the video click here to view it on you tube.

friday faves - adaptation

A good friend who I haven’t spoken with for a long time wrote to me recently. I think of him often and wonder what life is bringing his way. He mentioned how he wanted to talk with me but that, in reading my blog, he felt as if his problems were petty compared to what I was facing on a daily basis. I'm not sure.

If I’ve learned one thing since Calvin’s birth—and more so since his seizures began—it’s that we, as humans, are incredibly adaptive creatures. I remember, before Calvin was born, driving with Michael along a winding road on the Bolinas Ridge just north of San Francisco. The narrow road snaked through densely wooded glens broken by pristine, wide open seascapes and rolling, golden hills punctuated occasionally by gnarled oak trees. While listening to the radio, we were not only captivated by the scenic beauty, but by a story about happiness. The story described a study that had revealed findings about human adaptation. It explained how—even in grave circumstances such as incarceration or physical debilitation—after an initial adjustment phase, individuals ranked their level of happiness on par with a control group. It seems it’s well within our ability to adapt and be happy amidst less than ideal circumstances.

I will say that life with Calvin has been grave at times. It is true that grief has choked me, frustration has frazzled my nerves, nights are often sleepless and worry abrades my spirit. But, so has raising Calvin been the most uplifting and rewarding adventure of my life. To love this child—who rarely looks me in the face, who cannot express his feelings in words, whose dreams I’ll never know—and to have this child love me back, unconditionally, is to feel an emotion impossible to adequately describe, but one that brings me joy and happiness beyond measure. I believe that my life, especially since Calvin, is a reflection of nature in its ability to adapt and find ultimate balance—a path not unlike the meandering road with its dark, obscure hollows juxtaposed with bright expansive heights.

So, too, has the strain of raising Calvin heightened my sensitivity to the burden of others. I imagine that floating down a raging river through coarse, magnificent rapids might feel treacherous to some, while for others, the tempered water rippling at the eddy’s edge might prove terrifying. Both realities are true. Equally, no malady is petty or shameful—none to be belittled by another—and no accomplishment is unworthy of praise. As humans, we all suffer hardships and we all celebrate triumphs, both large and small alike, and through this constant ebb and flow between despair and rapture—and because of the compassion and empathy of others—we adapt, we find balance, we persevere.

Originally published 12.05.2010.

clever and wise

Yesterday I was clever, so I wanted to change the world.
Today I am wise, so I am changing myself.

—Rumi

photo by Michael Kolster

hopes and regrets

regrets:

Selfishness. Impatience. Inattentiveness. Disorganization. Neglect. Churlishness. Negativity. Gossip. Procrastination. Criticism. Worry.

hopes:

Patience. Productivity. Focus. Seizure-free, drug-free Calvin. Wiggle room. Repose. Travel. Exercise. Adventure. Hug Mom. Read. Read. Read. Tranquil child. Long walks. Sound sleep. Write book.

photo by Michael Kolster

unchanged

My hours blend into days, the days into weeks, weeks into years, and though the time passes, little changes for our eight-year-old boy. It’s as if he were standing alone—if he could—in the center of a time-lapse landscape video, clouds streaking by like ghosts, days and nights flickering past in blinks of time as the sun and moon see-saw in the sky, as long shadows creep across the landscape before receding into the night. The seasons pass; autumn leaves die and fall to the ground, snow smothers everything then spring begins to emerge in a thickening of green and bloom. But amongst all this evolution our Calvin remains mostly unchanged, like a static pillar of rock in the center of the beautiful scene, time flitting busily by him as he stands fast, the world seemingly unaware of his presence if not for his shivering form.

But I am aware ... I know. My boy is changing. The top of his auburn head reaches just about to my solar plexis. His face thins out, his teeth grow in, his limbs lengthen into smooth slender straps of muscle and skin, not much fat save tiny morsels smaller than a mandarin orange slice just at the back of his knees. Sadly, Calvin’s physical changes underscore his lack of cognitive and developmental changes. He still cannot walk without assist. He cannot utter words. His expressive and receptive communication abilities are practically non-existent. He can reach for us if we are near, he can try for his sippy cup if it is next to him on a table, he can sit up and kneel in his bed and pound the safety panel to beckon us, he can kiss our faces if our heads are touching.

But Calvin still crawls around the house like a little baby—coos like one too—drools as much if not more than a teething infant. He plays with his toes on the changing table, he puts everything into his mouth, he still struggles against gravity in negotiating the stairs, but he’s getting better. And although we have seen some progress I can count the times that the tulips have come up then withered—come up again then withered—yet Calvin is still doing some of the same things he’s done since he was two, with little to no improvement.

And I know deep down in my gut, where it's dark—sometimes heavy, sometimes hollow—that this virtual plateau in Calvin’s development, the one that keeps him at some twisted place between infant and toddler, is primarily—if not entirely—because of the seizures, the drugs and their side effects.

But just as the Grand Canyon’s impressive erosion secretly continues on for millenniums, just as its river snakes and meanders, slowly carving its own story into the stony facade while the clouds gather and shower infinite rains that sculpt and smooth the plateau—the sun and moon rising and setting over its face—just as these changes are imperceptible to the naked eye, so remains Calvin; mostly unchanged, though changing.

But our boy is enduringly beautiful with a capacity for love bigger than the broadest canyon, the widest river, the deepest, black-green sea or the expanse of cloudless sky that holds forever in its infinite palm.

Version originally published 12.29.11.

photo by Michael Kolster

a smooth process

Sometimes a smooth process heralds the approach of atrophy or death.

—Neil Young, Waging Heavy Peace

Neil Young

forty-nine

Despite the fact that eight years of raising Calvin has likely shaved a few years off of my life, in my mind, spirit and most parts of my body I still feel thirty-nine. But I woke up this morning entering my 50th year of life. And though my birthday starts with a head cold, a slightly sore shoulder and a middle a bit chubbier than at thirty-nine (but eating Frosty's donuts for breakfast anyway) from my perspective life still looks decently rosy.

That fact is a testament that we, as the refined humans we have evolved to be, are as resilient as shit, most of us able to handle the nasty curve-balls hurled our way at different times in our life. I'm not one to believe in the words I sometimes see and hear people quote, that God doesn't give us anything we can't handle, because if that were true why would some unfortunate souls off themselves? I am one to believe, however, that we can benefit from bad things that happen to us. We can find the generous pluses, for instance, amidst the scores of miserable minuses that a disabled child brings in the form of guilt, despair, anger, resentment, heartache, suffering, pain, sorrow, hopelessness, envy, frustration, doubt. My Calvin has brought me joy, love, patience, empathy and the rare chance to witness a life that, if it weren't for his physical pain, is as close to nirvana as any human might hope to get.

I have learned from Calvin how trivial material desires can be, how petty some quarrels are, and I am getting better at understanding how little it matters that he can't play on the Little League team, can't speak two languages, can't excel in math and science, can't work a computer, can't even trick-or-treat. Daily, I hear stories of children—and parents of those children—who deal with seizures or hunger or abuse far more heinous than Calvin's circumstance. And I think how grateful I am that Calvin is simply warm and dry and safe and happy and living with a forever-evolving forty-nine year old mom who feels ten years younger and is ready to take on the world, if not for herself, then for her son.

photo by Michael Kolster

be kind

Be kind and merciful.  Let no one ever come to you without coming away better, and happier.  

—Mother Teresa

My brother Scott and Mom

change the world

Never doubt that a small group of thoughtful, dedicated citizens can change the world. Indeed, it is the only thing that ever has.

—Margret Mead

photo by Valli Zampini