free and clear

Today, Michael and I were able to make a rare day escape while Calvin stayed home with his kick-ass-nurse, Rita. Though we were afforded just a few hours, it was one of only a small handful of daytime getaways we've had as a couple—free and clear of Calvin—in at least a year, probably two.

We took Nellie and headed to Popham Beach on a day that was warm for January in Maine, the mercury hitting the mid forties. Though the sun was shrouded, the beach is always beautiful, and this time the tide was farther out than we could remember having seen it.

It felt good to move my body, which I don't do enough of these days, and even better to be able to walk without fearing a bad fall on icy driveways and sidewalks or through crusty snow. It was also liberating to have part of a day to ourselves without the constraints of Calvin due to seizures or bad behaviors at home or on the road; he'd had a grand mal Saturday morning, but woke up without any today and in a good mood.

But I feel and fear another seizure coming, perhaps sometime tonight or tomorrow morning. It's been a sucky month seizure wise, one of his worst on record, albeit in the throws of puberty and on the smallest amount of pharmaceuticals since he was two or three years old. But I keep reminding myself that my days are no longer full of angst, the constant tension of expecting a seizure to strike at any moment, especially during Calvin's bath time; since reaching his current dose of THCA cannabis oil, his daytime grand mal seizures have virtually disappeared.

In less than a month, and after nearly four years of a wean, Calvin will be free and clear from his addictive benzodiazepine, and then, with luck, he will begin to heal and maybe even go on getaways with us to the beach again. It has been years.


short-term strategy

  1. Monitor whether going back down on Keppra dose reduces partial complex seizures.
  2. Get Calvin's blood checked, including yeast antibodies and low white blood cell count—possible symptoms of yeast overgrowth—plus low thyroid function and uric acid buildup, all possible seizure triggers.
  3. Continue weekly 0.05 mg reductions of clobazam; last dose planned for February 25th, if not slightly before.
  4. Make next THCA cannabis oil twice as concentrated for use during regular daily dosing as well as for nighttime dosing when needed (i.e. omit grain alcohol in making a nighttime oil, so as to eliminate possibility of inflammation.)
  5. Investigate and purchase tart cherry juice for improved sleep, antioxidant qualities, uric acid elimination and possible seizure suppression.
  6. If Calvin's blood test indicates a yeast overgrowth in the gut, treat with oral nystatin and/or saccharomyces boulardii and lactobacillus bacterium. Consider adding those two probiotics to his regimen nonetheless.
  7. Consider switching from CBD oil to CBDA oil because my gut is telling me to.
  8. Consider reducing Keppra in the future.
  9. Hope that after the elimination of clobazam, Calvin will eventually improve in myriad ways.
Photo by Michael Kolster


guts and gumption

Calvin had a grand mal at midnight, straddling day four and five since the last one. He fell asleep next to me after I gave him a dose of concentrated THCA tincture, woke back up at three o'clock repetitively humming, then wet himself and the bed and never went back to sleep. Instead, he kept sitting up, humming, and whacking his head on the padded side panel of his bed. Though we tried, Michael and I were so exhausted that we couldn't physically or emotionally manage his frenetic energy, so we bundled him up in his robe and secured him in his bed with his chew toys and Baby Mozart playing on CD.

Last year Calvin had an average of just under thirteen seizures per month, with 4.8 of those being grand mal and the remainder being complex partial seizures. In the two previous years he had slightly fewer seizures and an average of 4.25 grand mals per month, though on a much higher dose of his benzodiazepine, clobazam, aka Onfi.

This, our first month of what I was hoping would be a better year than 2017 on a variety of levels, Calvin has already suffered four grand mals and eight partial complex seizures. I can never be sure why one month is better or worse than another. I rack my brain and tweak his meds and personally diagnose his rashes and research their origins and investigate their treatments and rack my brain again and again for anything that might assuage the electrical storms that continue to invade his head.

For instance, I wonder if Calvin's bad month is due to a paradoxical effect of the slight increase in Keppra, or perhaps a previous decrease in CBD. I wonder if this last stretch of his benzodiazepine withdrawal is proving to be more problematic than I had expected. I wonder if Calvin has another overgrowth of yeast in his gut (perhaps the source of the stubborn yeast rash on his face recently) which is releasing toxins into his blood that can trigger seizures and bad behavior (his behavior lately—and coincidentally since an increase in Keppra—has been exasperating like the bad old days.) Or maybe the culprit of Calvin's regrettable stretch is plain old puberty.

My most recent thought is that I should test him for yeast and start him on a yeast eradication protocol and see what happens; in the past the treatment has correlated with fewer seizures and reduced hyperactivity. I am also planning to make my next batch of THCA cannabis oil twice as concentrated so that I can give Calvin some at night as opposed to the concentrated THCA tincture I made with a few milliliters of 190 proof organic cane alcohol added for more rapid absorption; perhaps even a tiny bit of alcohol is contributing to an inflammatory effect. Who knows, but I'm going to go with my gut.

If those remedies don't help, as soon as Calvin is completely off of his benzodiazepine late next month, I think I'll try to procure or make some CBDA oil as a replacement for his CBD; something inside tells me it could work better. And if all that doesn't lessen Calvin's seizures I may have to consider going back to pharmaceuticals, an idea that I loathe but one that I probably shouldn't completely dismiss.

To add insult to injury, all of this is happening while I am trying to make progress on my memoir, write the blog, walk the dog, clean the house (haha), advocate for racial and social justice, field one person's slightly deranged and ambiguous attempts at connecting with me, and cope with all of the bad news coming out of the White House and Capital Hill, not to mention lamenting daily reminders of how significantly delayed, disabled and ill my kid is.

I know that surviving and remaining somewhat healthy in our kind of situation requires a fair amount of gumption; I've got a few dear friends who are virtually in the same boat. But survival also means that I need to step back and breathe deeply, count my blessings and my child's good days rather than focus on his bad ones, nap when I am weary, eat better, get outside more, laugh off others' sour moods, insults, antics and badgering, and live happily in the moment, like Calvin—who better than anyone—teaches me to do.

Calvin and his teacher, Siobhan, inside a fish tank bubble the other day.


a danger within us?

Way back when Calvin had tried and failed his first several antiepileptic drugs, I learned about the VNS (vagus nerve stimulator), a device much like a pacemaker surgically implanted under the collar bone with a wire that wraps around the vagus nerve in the neck leading up to the brain. The device, as I understand, sends regular electrical impulses to the brain in an effort to thwart seizures before they begin. When it was suggested as a possible therapy for Calvin's epilepsy, my gut told me, no way.

My misgivings and questions were many: How effective is it? Are long term side effects yet known? How long do the batteries last? What happens when they fail? I don't want my son to go under the knife; on account of his fucked-up brain, his flawless body is most sacred to me.

I've stuck with my position all these years, having heard since then about mediocre results and nagging side effects of the VNS in children whose parents I know.

Yesterday, my dear friend Elizabeth Aquino alerted others in her blog post about some dangerous findings—cardiac and otherwise—resulting from implanted medical devices, in particular the VNS.

You can listen to the Fresh Air interview below, in which medical journalist Jeanne Lenzer, whose recent book, The Danger Within Us, exposes these risks. You can also click on the title of the episode to read the transcript from the show.


i have a dream

On this, Martin Luther King, Jr. Day, I have a dream—a dream of leaders who espouse decency, humanity, reason, love, kindness, honesty, integrity, compassion, wisdom, inclusiveness, justice and equality. I know plenty of these good people exist, and so I will meditate on them. With folks like Martin Luther King Jr. in mind, I will continue to champion the causes of equality, fraternity and charity. I will go down on one knee for justice. I will support those who personify the very best in us.

I, too, have a dream, and with legions of others, I'll work to make it come true in two-thousand eighteen.


good people and bad men

I often ask people, mostly Calvin's classmates, if they know why I think Calvin is the best person I know. Most of the children say that it is because he is my son or because he suffers so much and still keeps on going. When they are done guessing, I tell them it is because he doesn't have a mean bone in his body, wouldn't hurt another person purposefully and, perhaps most of all, he doesn't discriminate.
After hearing what the shameful POTUS said recently about places like Haiti and Africa where black and brown-skinned people live, I thought about what a vile, racist person he continues to prove he is.
This morning, I read a blog post from a pastor named John Pavlovitz, who regularly nails it when it comes to talking about injustices. This time is no different. Rarely have I heard a more fitting and deserved description, and so I am going to share his righteous words here:
At times in this life it can be a challenge to figure out who the bad people are, but sometimes they help you.
Sometimes they do the work for you.
Sometimes with their every vulgar, bitter word from their mouth, they testify to their personal malignancy and they make it easy to identify them.
Generally speaking, there are things that good people do and things good people don’t do.
Good people don’t refer to entire countries as “shitholes”—most notably countries that have given birth to our very humanity; ones that for hundreds of years have been colonized and poached and mined of their riches by powerful white men; countries whose people have been enslaved and sold and forced to come and build your country. 
Good people by any measurement we might use—simply don’t say such things.
Of course good people also don’t say they could grab women by the genitalia, either.
They don’t defend racists and nazis and call them “fine people,” days after murdering a young girl and terrorizing an American city.
They don’t brag about their penis size during debates, or suggest protestors at campaign rallies should be roughed up, or crack jokes about captured war heroes, or make fun of the physically disabled.
They don’t.
Good people don’t tweet anti-Muslim rhetoric in the moments immediately following a bombing in order to bolster a position. They don’t leave American territories filled with brown skinned people without power for months upon months, after publicly ridiculing their public servants and questioning their people’s resolve. They don’t erase protections for the water and the air, for the elderly, the terminally ill, the LGBTQ. They don’t take away healthcare from the sick and the poor without an alternative. They don’t gouge the working poor and shelter the wealthy. They don’t abuse their unrivaled platform to Twitter-bait world leaders and to taunt private citizens. Good people don’t prey upon the vulnerable, they don’t leverage their power to bully dissenters, and they don’t campaign for sexual predators.
But this President is simply not a good human being, and there’s simply no way around this truth.
He is the ugliest personification of the Ugly American, which is why, as long as he is here and as long as he represents this nation, we will be a fractured mess and a global embarrassment. He will be the ever lowering bar of our legacy in the world.
And what is painfully obvious in these moments, isn’t simply that the person alleging to lead this country is a terrible human being—it is that anyone left still defending him, applauding him, justifying him, amening him, probably is too.
At this point, the only reason left to support this President, is that he reflects your hateful heart;he shares your contempt of people of color, your hostility toward outsiders, your ignorant bigotry, your feeling of supremacy.
A white President calling countries filled with people of color shitholes, is so far beyond the pale, so beneath decency, and so blatantly racist that it shouldn’t merit conversation. It should be universally condemned. Humanity should be in agreement in abhorring it.
And yet today (like so many other seemingly rock bottom days in the past twelve months) they will be out there: white people claiming to begood people and Christian people, who will make excuses for him or debate his motives or diminish the damage.
They will dig their heels in to explain away or to defend, what at the end of the day is simply a bad human being saying the things that bad human beings say because their hearts harbor very bad things.
No, good people don’t call countries filled with beautiful, creative, loving men and women shitholes.
And good people don’t defend people who do.
You’re going to have to make a choice here.


bfd and thoughts thereof

I know what you're thinking about that title, at least if you are someone who has a potty mouth like I do. BFD. Big effing deal, right? But it's not what you think. This time I am referring to the Brunswick Fire Department, who came to our house yesterday in their day-glo yellow trucks, lights flashing as they silently sidled up to the curb and bailed out in their yellow, tan and reflective gray regalia like so many astronauts.

They came because Calvin's effing-breath-of-fresh-air nurse Rita, upon hearing for days our furnace had been struggling, and having smelled the fumes from our basement, suggested we call the BFD to come check for carbon monoxide. After all, and as she so humorously put it, she had some skin in the game. Minutes later they arrived, one by one making their way through the mudroom door and into the basement with gas masks on. Sure enough, we had low levels of CO on both floors and a pretty high level in the basement, so they shut down our furnace amid sub-freezing temps and said not to turn it back on.

While the men forced out the toxic gas with a large fan, one of them carried Calvin, who had been lethargic and ataxic, out to the ambulance to keep warm. It brought back bad memories of too many 911 calls and trips to the ER due to prolonged seizures years ago. Inside the ambulance, Calvin propped against me, I called a few heating specialists who were recommended to me by friends on Facebook. I told them our dire situation while wondering if the carbon monoxide might have had something to do with Calvin's spate of seizures and his lethargy the previous three days. Thankfully, I got through to Al, from A&R, who my friend Sarah so highly recommended.

Shortly thereafter, Woody came over and offered for us to sleep at his place if our house had no heat overnight. Mary and Cindie drove by on Calvin's bus worrying, having seen the fire trucks. Another friend offered us refuge for the night if we needed it.

When the CO measured zero we were able to reenter our home. I thanked the firefighters (I had no idea how much I like firefighters!) and even hugged the one who carried Calvin back indoors. They were all very kind and gentle. I wish I had taken their photo.

Within the hour, Al came by to take a look at our disabled furnace. He had the wherewithal to stop by the fire station first, to get the skinny on our situation. Immediately, I knew Al was a good guy. He was congenial to Rita and asked her where she was from. He asked Michael all about Calvin. He was professional and kind. He knew what he was doing. He fixed the furnace in just over an hour! (I should mention that Rita had asked the universe for that to happen.)

Last night, I remembered having had a waking nightmare about the three of us dying from carbon monoxide poisoning. Our furnace had been uncharacteristically failing to keep up the past two or more weeks which included several sub-zero nights, some as cold as minus fifteen, and days which struggled to reach the teens. I had repeatedly suggested to Michael that something was wrong with the furnace, but until we woke up to a house that was fifty-two degrees, he'd been in some kind of denial. After Al and Rita had left, Michael apologized for not having listened to me when I first suspected a problem with the furnace, and for giving me a hard time when I pressed him about it.

"I'm sorry. I let you down, didn't I?," he said, then repeated the sentiment, earnestly.

His first two words would have been enough, but characterizing his own behavior as having let me down reminded me of what a good man and husband he is, reminded me of the wedding vows we'd both written.

In recounting yesterday's events, I am reminded also of the benefits of a well-oiled society. When our house is in flames or fumes, no matter if we are wealthy or poor, the fire department shows up. If we are being burgled or harassed, the police come to your door. Every week our garbage is picked up curbside. Our roads are paved and swept and plowed. In storms, our downed power lines are restored. No matter who we are, or what our means, we can be sure these things will be taken care of. It's about the betterment of society. We all pay into these services so that they will be available to anyone, thus making us safer as a whole. The same should be said of health care, which is a BFD (big effing deal). If we are sick or dying, we should be able to see a doctor for treatment or have a surgery or get chemo without having to worry about bankruptcy. It is for the betterment of society if we are all healthier individuals. Healthy people are able-bodied and are less of a drag on so many other social services as a result. Our nation could actually save money on healthcare costs if we supplied health care to all.

To be sure, children suffer and die daily because they are born into hard-working families who don't have health insurance. Are they or their families deserving of their demise? Is our moral compass so out of whack that we choose to let certain families languish from neglect? Perhaps the very worst Americans would welcome those outcomes, or at least turn a blind eye to those deaths.

Again, I think of those firemen carrying Calvin through the snow, just as I remembered their colleagues carrying him to the ambulance when he was tiny as a baby and seizing in their arms. Back then, and because we had health insurance, I never had to worry that the hospital would refuse us. I never had to worry about how much it would cost or if it might mean losing our home. The reality is, no one should have to. Our health is sacred, as is our safety, as are our homes. Why some folks think healthcare is a privilege for the well-to-do rather than a right for all, I'll never understand.

Photo by Zack Tooker



These past few weeks have been rough ones. Evening temperatures have plummeted into the negative teens. The wind has been cutting. The highs have been in the single digits and low teens. The sun has been hiding. For some reason the furnace isn't keeping up with the demand, and the other morning we woke to a house that was only fifty-two degrees. Calvin has been sick with a low-grade fever and a persistent rash on his cheeks and chin. He has suffered seizures on three consecutive days. Sleep is elusive. Minds are weary. Bodies are cinched up. Tempers are fragile. Patience is being tested.

Last night, while lying in bed next to my feverish and seizing boy—the THCA oil not working well enough to quash a spate of partial seizures—I thought about the world. I considered the reckless mess of a president and wondered what the hell is wrong with him. So unhinged. I'm angry at Attorney General Jeff Sessions who just deceitfully or ignorantly stripped Calvin of his protections for using medical marijuana to treat his epilepsy. I'm weary of the niggling from someone who used to be close to me and who now seems intent only on impressing and playing paranoid cat and mouse games.

But Calvin's condition—the vast number of seizures he has plus his disabilities—and his ability to pull through and remain as sweet and loving as he is, is the great equalizer that puts things in perspective for me. Spats with my husband about our failing furnace in these sub-zero temperatures become ridiculously puny feuds. Pathetic messages from an unhinged individual become ludicrous proof of his lunacy. Worries about the DOJ's rollback of Obama-era protections of medical marijuana users become hilarious visions of CPS agents coming for Calvin, taking one look at our effed-up kid and running away as fast as they can or, in another vignette, the Feds taking me from my kid, thus galvanizing legions of supporters to take to the streets in mutiny.

This morning I watched part of Oprah Winfrey's speech from last night's Golden Globe Awards. She was flawless, poised, beautiful, her message one of sanity, strength, hope, inclusiveness, progression, harmony. Word is she may run for president in 2020. Wouldn't that be peachy—a bigoted, misogynistic, baggy, deceitful, right-wing, white, male reality-tv blowhard being handily unseated by a vibrant, talented, intelligent, informed, compassionate, normal, yet extraordinary, African American woman who is admired by millions around the world! Now that is some fresh perspective I can sink my teeth into, though to be honest I'd rather have a president who is a constitutional scholar, like Obama, and has at least some experience in politics.

By now, with the help of a fire in our wood stove and a small space heater, the house has finally reached sixty-two degrees, though we still have yet to find a plumber to come take a look at the furnace. Know anyone good? In the meantime, we are wearing our robes and coats inside. Calvin hasn't had any seizures for a few hours. He seems a bit peppier. I'm done with that niggling someone. Sunshine and much milder temps are forecast for tomorrow. Calvin will be off of his benzo in seven weeks. I predict there will be a blue tsunami come November. I believe what's-his-face's days are numbered. And perhaps tonight I'll get some sleep.

Photo by Michael Kolster


voice of the epilepsies

Very proud and appreciative of my friends Matt Webb and Tiffany Webb who worked so hard on making this film about such an important topic, and to my buddy Jim Abrahams (of Airport! fame) for making it possible.

The film is a poignant exploration of one family's struggle with the hardships of epilepsy and disability. Watching it as Calvin recovered from a partial complex seizure this morning, I wept seeing Tracy and Savannah, who I had the pleasure of lunching with while in San Diego years ago, grapple with the shitshow that is mother-effing epilepsy.

I am so grateful to have been able to help fund its making, and thankful to many of my friends who also donated to the project.

Please consider buying or renting the film on Vimeo.

Voice of the Epilepsies from Tiffany Webb on Vimeo.


an open letter to jeff sessions regarding medical marijuana

Dear Mr. Sessions,

Meet my thirteen-year-old son Calvin. He was born missing a significant portion of the white matter in his brain, a heartbreaking idiopathic anomaly. He is legally blind, nonverbal, incontinent, autistic and needs great assistance to do the simplest things that most infants can do. And contrary to your assertion that good people don't use marijuana, he is the purest, most affectionate soul on earth. 

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

Since then Calvin has continued to suffer thousands of seizures despite taking high doses of ten powerful anti epileptic drugs, sometimes as many as four at a time—disturbingly referred to as a cocktail—and two rigorous dietary treatments. The sedative drugs have stunted, and in some cases reversed, his already protracted development, and their paradoxical side effects have wreaked havoc with his behavior. One in particular, a benzodiazepine named clobazam, aka Onfi, we believe has impaired his memory affecting his ability to learn new things, and likely causes him pain, anxiety, insomnia, gastrointestinal distress, tinnitus, hyperactivity and psychotic episodes.

Four years ago, when Calvin was suffering frequent (every week or two) early-evening grand mal seizures—often while in the bath—and after some extensive research, I began treating him with a homemade cannabis oil rich in the non-psychoactive component tetrahydrocannabinolic acid (THCA). Since reaching a therapeutic level of the oil, which I draw up in precise doses and administer with an oral syringe, Calvin has had only four daytime grand mal seizures in over three-and-a-half years. Moreover, in that time Calvin has been able to safely reduce his dangerous and addictive benzodiazepine by ninety-nine percent without suffering a huge uptick in seizures.

When I read last March that you said, “medical marijuana has been hyped,” it was clear to me that your position is one that is rooted, at the very least, in ignorance. Now I hear that you intend to roll back Obama-era protections for those who use cannabis, even for medicinal purposes, and I wonder if your stance stems from pressure from the alcohol, pharmaceutical and private prison industries.

invite you into our home to spend some time with our boy and to witness our experience. For some children with catastrophic, medically resistant epilepsy, cannabis is their only hope. I wager you would be hard-pressed to remain a skeptic if you met children like Charlotte Figi who would otherwise have died from the effects of frequent, repeated and prolonged seizures if not for taking cannabis oils that stopped those seizures in their tracks. And while children like my son benefit from concentrated oils that can be precisely titrated, some adults who suffer from conditions like Crohn's disease, PTSD, multiple sclerosis and Parkinson's disease often get relief from their symptoms by smoking, vaping or juicing marijuana.

You might be apt to suggest that cannabis is not safe or effective or that we don’t know the dangers of its side effects or its interactions with other drugs. I'd counter by saying that the same can be said of the pharmaceutical medicines our children currently take. Some drugs have debilitating and dangerous side effects, others have unknown longterm consequences, while still others have known lethal ones. Some pharmaceuticals are highly addictive and lose their efficacy due to habituation. Many, if not most antiepileptic pharmaceuticals, are psychoactive in that they affect cognition and behavior. Not all of them have been studied on little children, and yet they are prescribed nonetheless. I'd also ask why the federal government holds a patent on cannabinoids (#6630507) for use as antioxidants and neuro-protectants while spuriously maintaining the plant's status as a Schedule I drug, purportedly having no medicinal benefits.

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

Please do not make reckless policies about a subject that it appears, as evidenced by your statements, you know little if anything about or, worse, are guilty of subterfuge.


Christy Shake

Me and Calvin, Photo by Ann Anderson


eight and a half weeks

In eight-and-a-half weeks, if all goes as planned, Calvin will take his last dose of the benzodiazepine, clobazam, aka Onfi, which we will have been weaning for almost four years. The other day I was telling a friend how much we have reduced it, explaining that four years ago Calvin was taking the pill equivalent of fifteen one-milliliter syringes of clobazam every day compared with just over one tenth of one of those syringes each day now. The visual comparison even shocked me.

Granted, in the year prior to beginning the wean, Calvin only had about thirty grand mal seizures and no partial complex seizures to speak of. The years that have followed the advent of the wean have been riddled with nearly double the number of grand mals and the appearance and major uptick of partial seizures. But the increase in seizures has not been as bad as I had expected in the face of withdrawal and the onset of puberty which can exacerbate epilepsy. More so, Calvin's behavior, sleep, mood, balance, understanding, expressive communication and overall health are legions better than when he was on high doses of the drug. I am also consoled in knowing that Calvin's grand mals have increased by less than ten percent since the first year of this three-plus-year wean, and his partial complex seizures have decreased in the past four months since having eliminated his vitamin B6 supplement and cut his CBD cannabis oil by two-thirds.

Even though Calvin is still having too many grand mals, the daytime ones have virtually disappeared since having reached his current dose of homemade THCA cannabis oil. My hope is that once he is free and clear of the benzodiazepine for a few months we will begin seeing a reduction in seizures. I also have another non-pharmaceutical trick in my back pocket if things go south: I'll find a way to try giving Calvin CBDA (I had an epiphany about CBDA a month or so ago and have since learned others are using it successfully).

So, my outlook for 2018 is pretty good concerning Calvin. I'm also hoping for a blue tsunami come November in the form of electing more Democrats—perhaps flipping control of the House and Senate—ushering in more sanity, compassion and a better representation of twenty-first century progressive America which includes more women and people of color.

But for now, I've got my eyes focused on that final dose of benzo, February 25th, which is in just eight-and-a-half weeks!