5.19.2017

imperfect world

In a perfect world, I’d be the span of a continent away this weekend celebrating my induction, along with a dozen or so of my fellow teammates, into my university’s athletic Hall of Fame. In 1986, the year they voted me team captain, my college swim team won the NAIA national championship.

In a perfect world, my husband and my son might have joined me on the uneventful, albeit long, cross-country plane ride plus a drive east from Seattle through the Cascade range to the arid wheat fields and pastures of central Washington state. However, a month or so ago, when I understood—and lamented—that I couldn’t bare to leave my oft-seizing boy to travel three-thousand miles and be gone no less than five days and at least a full day of travel away, I decided not to go.

But when Michael saw my disappointment, and since he'd cleared his calendar to take care of Calvin, he gifted me a ticket for a quick trip to New York instead. I’d not been back to the Big Apple, one of my favorite places in the world, for seven years, though I had promised myself I’d go every spring. He knew I desperately needed to get away, could sense my restlessness, exhaustion and despair, and if I couldn’t manage a cross-country trip, at least I could get away for the weekend to a place that I love that is less than an hour flight away. This, I could justify doing. And so yesterday, though it killed me to leave a sick, feverish and seizing boy and my loving husband, my blooming garden and the perfectest dog in the world, I pried myself from the safety and comfort of home and put myself on a plane.

During the flight, and especially when I finally saw the Manhattan skyline, anchored in a way by Lady Liberty lifting her torch above the horizon, I thought about a perfect world. In a perfect world, I thought, my child would’ve been born normal. In a perfect world he wouldn’t be suffering epilepsy. In a perfect world, he wouldn’t endure the effects of heinous medications and a protracted, painful and difficult withdrawal. In a perfect world my son would walk on his own and see well and run and play with friends and talk and tell us what is wrong. In an ideal world, perhaps, I’d be able to be two or three places at once.

But it is not a perfect world. It is imperfect at best. And so Michael is home with our sick little kid and I am here being coddled by loved ones and friends, and hopefully by Sunday when I'm heading home, I'll be rested, refueled, energized and ready to get back to the business of taking care of Calvin again.

Looking to Manhattan from the deck of the Brooklyn bridge.

5.12.2017

friday the thirteenth

Though today's date is May twelfth, it's also Friday the thirteenth—thirteen days since Calvin's last observed seizure. How strange it feels to have witnessed my boy have some kind of seizure or another on half of the days last month and then not see any nearly halfway into this one.

This morning, under a still, gray sky, Michael and I went to watch Calvin participate in the local Special Olympics. Despite the fact that it was barely fifty degrees, the most disabled children—the ones in wheelchairs and strollers and using walkers—sat around for two hours while the other disabled children, teens and adults, raced around the track finishing their miles and their four-hundred yard races. Don't ask me why the event coordinators insist on putting the longest events for the healthiest contestants at the beginning of the day. Perhaps there is some method to their madness, but this weighs heavily on me and Calvin because, in one way or another, most days are hard ones for him—suffering seizures, drug side effects, withdrawal side effects, constipation, abdominal discomfort or pain, headaches, agitation, confusion—and so a day outside exposed to the elements of a Maine May no doubt preys on his fragility. Nevertheless, with the help of his ed tech Karen he endured until the start of his hour-late, ten-yard "assisted walk," though not without having had periods of spaciness and eye-fluttering (seizures?) and several attempts, some of them successful, at dropping to the ground throughout morning. He brought up the rear this time, due in great part to a slow start and the absence of an uber-competitive mother tugging him along. When he crossed the finish line, I got down on my knees and hugged my boy, who smiled a huge, proud smile. Not long after, Michael and I loaded him in the car and ferried him away.

Once home, he spun in his jumper, strolled hand-in-hand with me through the garden touching his favorite shrubs (the prickly mugo pine is his favorite) and walked quite well to Woody's, swinging his arms correctly at his side and with good balance (bad omen?). At Woody's, as always, he rocked in the rocker and ate a piece of chocolate from the candy jar.

At the usual time, the bus stopped at the end of our drive to off-load Calvin's stroller which he had sat in for the Special Olympics parade of athletes. Another ed tech, Michelle, handed me a stack of colored papers meant for Calvin, who was upstairs in his bed playing with (mouthing) some of this toys. With the baby monitor slung around my head eighties style, I sat in the bench on our deck, the sun having just come out, reading cards some of Calvin's sixth grade classmates had made him for the day:

Calvin is cool!!
Good luck! Congrats! From: Ashley
Congrats CALVIN!
Good Luck! Nice Job! From Hannah
Good luck. hope you win!! from: your friend connor

Two of them, drawn with great care and skill, made me cry:

Dear Calvin, I hope you have a great time at the Special Olympics and win! But most importantly have fun and enjoy yourself! Sincerely, Simon

and

Good Luck! Yay! Nice job! From: Lydia :)

I'm hoping that Friday the thirteenth becomes Saturday the fourteenth and so on. I'm hoping that, in the big picture, each day gets a little better than the last. I'm hoping that whatever I am doing will keep working; my guess is that the minuscule amount of THC tincture at midnight on suspicious nights might be thwarting pre-dawn seizures. And I'm hoping that one day Calvin will compete happily and more independently in the Special Olympics without a blink or a drop, a spell or a balk.

Calvin with his ed tech, Karen

5.08.2017

animal. vegetable. mineral.

Friday night, we began our weekend in the nearby town of Bath with a quick bite and a drink at our dear friends' Daphne and Eloise's new restaurant, Salt Pine Social. The restaurant was festive and humming, guests clinking their drinks, servers buzzing between tables, the bartender and cooks flat out. We were grateful to have snagged the last two seats at the bar, our favorite spot to dine. With glasses of bourbon and beer in hand, we perused a fresh menu divided into three categories: animal, vegetable and mineral.

Vegetable:

We began our culinary experience noshing on a scrumptious chiogga and golden beet salad with citrus and arugula just as a complimentary bowl of melt in your mouth Myer lemon ricotta gnocchi with parsley pesto arrived.

Mineral:

Next, we dipped into the sea, beginning with a parchment-lined terracotta bowl cradling a heap of deep fried anchovies, followed by a plate of garlicy fried calamari, a platter of gravlox and cream served aside a stack of nutty Danish rye triangles and, lastly, a bowl of plump and savory le moules. Regrettably, we had to leave our hosts and our happy sojourn abruptly in order to make it home in time to relieve Calvin's nurse.

Vegetable:

Considering how things have gone for Calvin of late, it was a good weekend. He hasn't had an observed seizure of any kind in nine days, though he has exhibited some suspicious behaviors, spells of dubious pallor and a bit of what I call seizure breath. I anticipated grand mals last night and the night before, so I tried a new strategy. After midnight both nights, I gave Calvin four milligrams of homemade THC cannabis tincture, a quick and minuscule squirt inside of his cheek, not enough to wake him or risk aspiration. The seizures never manifested.

Animal. Vegetable:

On Saturday night we hosted a small dinner party with some friends we hadn't seen for awhile. Michael had spent most of the afternoon in the kitchen making a chicken mole. He made it with toasted sesame and pumpkin seeds, jalapeƱos and cilantro and served it over rice with warm corn tortillas, sour cream, guacamole and green salsa. Before eating, we sat before the fire talking cracking jokes and talking about, among other things, corn snakes, oscars, goldfish and frozen mice snake treats.

Vegetable:

While I mashed avocados in a bowl between my knees, I looked beyond our guests out the French doors to a glowing early evening garden, glistening with new rain and splashed with bunches of color from magnolias, amelanchiers, early-blooming rhododendrons, tulips and the crimson of young peony shoots.

Mineral:

As sparkling water and wine poured freely at the dinner table, upstairs our sweet Calvin slept like a stone.

5.01.2017

holding onto hope

I'm trying hard to hold onto hope. After three years of an ongoing benzodiazpine withdrawal—until now yielding no significant uptick in monthly seizures—Calvin has begun having quite a few more these past two months. His average monthly number of grand mals since April of 2014 had held at around 4.3, but in March and April this year he suffered six each, and in April he had thirteen obvious partial seizures.

Recently, I got Calvin's report card stating that he has missed twenty-nine days of school, and has been tardy more than a handful. His absences—which amount to a total of six weeks of missed school—are largely due to seizures. Last month he suffered seizures on fifteen of thirty days.

When resulting despair begins to set in, I remind myself that not long ago Calvin went twenty-seven days without a grand mal. And so, as we inch his benzodiazepine toward a goal of zero (Calvin is now on 1.75 milligrams per day, down from a high of thirty-five three years ago) I try to remain optimistic that he can repeat a good stretch of seizure-free days.

Another consolation to my sorrow and dread is that I still have a few tricks in my back pocket. In other words, we haven't run out of options to try to reduce our boy's seizures. This weekend, I heard a Radiolab segment about treating mice with lactobacillus to increase GABA, the body's chief inhibitory neurotransmitter responsible for reducing neuronal excitability. GABA is what Calvin's brain is craving during benzodiazepine withdrawal. It made me wonder if doubling his morning probiotic, rich in lactobacillus strains which promote GABA, might mitigate some of his seizures. So I increased Calvin's probiotic this morning. If that doesn't work, I'll likely try switching his magnesium citrate supplement to one that has the ability to cross the blood-brain barrier and may also help regulate the uptake of calcium, which might have a positive effect on his seizures. Something else I've tried several times is to give Calvin a few drops of concentrated THC tincture when I suspect he's having partial seizures at night, and also during grand mals, to thwart further seizures. It's too early to tell for sure if that method is working, but it shows promise. Then, if none of those options pan out I'll likely increase his CBD oil or switch to an oil that has a higher ratio of THC to CBD, which Haleigh's Hope offers, considering some children find relief from their seizures using a bit of THC.

So, we still have some ammunition to hurl at Calvin's seizures during this painful and ridiculously protracted benzo withdrawal which, regrettably, is happening during puberty, a time when seizures often increase anyway. But I'm pretty hell bent on getting him off of the class of drug that he's been on since he was three.

Having said all that, despite the fact that Calvin is having a handful more seizures than he was three years ago, he is a different kid altogether, more, in ways, like he was before the benzos and other antiepileptic drugs. Before we began the wean and before we started him on cannabis, he used to wake crying every morning and I wondered how I could tolerate it much longer. He used to be awake for hours in a single night. He stopped being able to sit calmly on our laps while we read him books. He flailed and shrieked every time we changed his diaper. He coughed and sputtered and screamed much of the day. He pulled my hair. He shrieked every time we got in the car and most of the time we drove. He was disruptive in our favorite cafe. Now, with over ninety-five percent less benzodiazepine coursing through his veins, he is far calmer, more patient, more loving, more focused and, frankly, infinitely more tolerable. I'd even go so far as to say that, for the most part, he is a joy to be with again, and much easier to take care of than before.

So, I'll keep holding onto hope that we can get Calvin safely off of the benzo and be rid of them forever. And I'll keep holding onto hope that someday we'll find a way to stop his seizures while still keeping our sweet, happy, mostly calm, boy.

Before the benzos (and other drugs.) Photo by Michael Kolster

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