choices

Recently, while listening to a podcast about abortion, a sickening thought popped into my head: what if my obstetrician concealed the fact that my fetus, who became Calvin, was missing some—perhaps most—of the white matter in his brain?

Michael and I didn't learn of the grave anomaly until a follow-up sonogram when I was thirty-two weeks along. I remember a Boston specialist's surprise that the malformation hadn't presented in one of my earlier sonograms from Maine. It was her opinion it should have. Thinking back, I wonder if it had without us knowing.

With news on abortion trending, I relive the events of my two pregnancies. I revisit the initial weeks of my first one, and the dreaded feeling at seven weeks that I wasn't pregnant anymore. I remember the sonogram revealing there was no fetal heartbeat—confirming my suspicion—and the gut-wrenching decision to wait for my body to expel the miscarried fetus or to undergo dilation and curettage. I then recall my OBGYN moving her practice out of town and, when I got pregnant again, asking friends to recommend a new one. I relive the first few visits to see the new doctor, my request for a CVS test to check for genetic abnormalities early on, her resistance to assent, followed by her comment that if we found something terribly wrong with the fetus we would be "hard-pressed" to find a local doctor to provide an abortion, asserting her refusal to perform the procedure herself.

She offered no further discussion on the topic, no counseling, no support, no understanding, no offer to refer if needed. In my and Michael's minds, she was negligent and indifferent. In the end, a sonogram proved my pregnancy was in its thirteenth week, too far along to undergo the test.

In revisiting these moments from over fifteen years ago, I wonder if my obstetrician secretly knew early on—though concealed it because of her religious beliefs—that Calvin was missing as much as 80% of the white matter in his brain, a percentage that one pediatric neurologist cited after having studied my fetal MRI and sonograms. He later told us our child might never crawl, walk or talk. He never mentioned severe visual impairments or uncontrolled seizures as possibilities.

If Michael and I had known early on of Calvin's malformed brain, and had we known the dreadful extent to which it might impact his well-being and quality of life, his development, cognition, coordination, communication, vision, ability to move about and function independently, and his increased odds of having unstoppable seizures, or of being abused by caregivers, would we have chosen to terminate my pregnancy? I really can't say. But one thing I do know with certainty: it is torturous to see Calvin suffer on a daily basis, to see him seize repeatedly, sometimes for several consecutive days, bite his cheek so bad it bleeds, see terror in his eyes and malaise on his face, be a veritable guinea pig for neurologists and me, endure the miseries of antiepileptic drugs and their heinous side effects, to see him hurt so needlessly.

Especially during rough stints, it's hard not to imagine how life might have been—perhaps easier, calmer, happier, less restricted, less anxious, less heartbreaking—if Calvin had never come into this world. I find myself resentful of still having to spoon-feed him and change his diaper after fifteen years. I get frustrated by the fact he can't do the simplest of things. I'm chronically sleep deprived from his frequent awakenings. One moment I lament his existence and the next I wonder what I would do without him. And though Calvin brings me immense joy at times, and though he is as precious to me as any mother's child could be, our lives have been profoundly strained by his existence. All three of us suffer, but none more than our sweet Calvin. Life with him, worrying about and watching him endure his maladies—despite, or perhaps owing to, the fact I love him immeasurably—is such a painful and burdensome endeavor that at times I regret ever deciding to have a child.

Yesterday, I read a post on social media accompanied by a photograph of a young woman in a long dark dress cupping her pregnant belly, head bowed. The post read:

I’ll be honest. This week’s news cycle has been exhausting and painful. 

This picture is me, taken the night before I terminated my pregnancy. My head is bowed and my hair covers my face, so what you don’t see is the grief, my face and eyes swollen from days of no sleep and constant weeping. After days of research and google and doctors visits and soul wrenching conversations with my husband about whether we would bring our son into this world knowing he would not survive. 

Women are not waiting until the third trimester and saying “oops, I changed my mind.” They have little outfits in drawers, maybe even have the nursery set up, they have picked out names. And then they’re having their hearts broken after discovering their baby will not come home. Please be kind. Please read our stories. Please research before you post.

None of these situations nor the feelings they induce are easy. There's no black and white, cut and dried logic to apply when pregnant women are faced with these dour choices. Panels of men in suits and ties meeting behind closed doors should not be deciding pregnant women's fate. Sometimes the most intimate and hopeful situations sour. That is when understanding and empathy come in, not hyperbolic, false propaganda and political posturing by men in positions of power who'll never be pregnant. We need to listen to women's stories and trust them to make the best well-informed choices they can when their lives turn upside down.

To imagine again that someone—a stranger to me—could have decided my fate and the fate of my family in such an intimate and tragic matter is chilling, dystopian, really. With the future of Roe vs. Wade now in jeopardy, and access to safe, legal abortion becoming harder in many states due to anti-choice efforts, our mothers, daughters, sisters, wives and partners are facing similar peril, when what they need most is love, understanding, support, and the ability to make their own choices.

keen ideas

For three days in a row Calvin slept in my lap downstairs on the plush couch, waking only for a few moments at a time before laying his head down again. No fever. No cough. No runny nose. Just refusing food and not drinking enough. The few times he walked, he was weak and wobbly, and was spacey and pale at times as he sat idle in the middle of the floor. If it were not for the fact that he began showing signs of some kind of ailment prior to the seizures he had on his birthday morn, I'd think perhaps the culprit were my most recent batch of THCA cannabis oil which is slightly hazier than usual having used a different kind of oil.

Today Calvin seems much better, and although his balance is still off, he went to school and ate most of the food I packed for him, which is no small amount (my boy seems to have a fast metabolism.)

Lately, I've been more keen on the idea of taking care of my own body a bit better than I have these last several years. A couple of loved one's radical health issues, which landed them each in the hospital for surgery through no fault of their own, got me thinking—Michael and Calvin would be totally fucked if anything happened to me. With that angst-causing thought in mind, I'm keen on sleeping more, keen on drinking less alcohol, walking more, eating more real foods like fruit and fewer ones like chips. I'm keen on consuming more vegetarian meals if I can convince the chef of the house to let up a little on those winter comfort foods—namely pork and lamb—which he likes to cook, and I like to eat so much.

I used to regularly feel ten or fifteen years younger than my age. These days nearly all of my fifty-four years are palpable to me. Perhaps this feeling is partly due to the long winter, to being trapped inside and unable to move my body as much as I'd like to outdoors, what with all the ice and snow (I don't like exercising in groups or swimming indoors.) Perhaps it's these extra handful of pounds hugging my body and not letting go. No doubt it's cumulative sleep deprivation and the lack of sunshine we've had this winter in an otherwise decently sunny town. Chances are the stress of raising Calvin causes more gray hair to grow.

Thankfully, spring is on its way. And in less than two weeks Calvin will take his very last dose of benzodiazepine after ingesting them since he was three—nearly eleven years. Just that will liberate me! Hopefully he'll come off the bus in a few minutes with a smile on his face and walking steady and tall. With luck, as he grows (he is a foot shorter than I and nearly half my weight) I will become stronger still, something I'm very keen to do.

Photo by Michael Kolster

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

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!

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

hiatus

In less than twenty-four hours I’ll be boarding a plane for California. I’m mostly looking forward to it, though I’m already missing Calvin, Michael and Rudy the shit-for-breath dog. It’s a bit of a catch-22 in that I desperately need a break from my son and the cold and the snow and the ice and the tedium, while at the same time I worry and loath leaving because Calvin is still sick and bound to have seizures as a result.

Last night on the phone my friend Elizabeth (my blogger, dragon-mom friend from Los Angeles with whom I’ll be visiting for half of a day) told me I need this break. She underscored that, having somewhat adjusted to life with Calvin as being a kind of new normal, I’m probably not even aware of how badly I need it. But I do know, for my health, I’ve got to be able to enjoy a night or two without getting up five times like I did last night, and I need to be able to sleep in past six o’clock. For my psyche, I need to relinquish all that is Calvin-centric: the shopping, the meal-making, the pill-cutting, the dispensing, the bathing, the dressing, the laundry, the feeding, the diaper changing, the walking around, the lifting, and instead enjoy a hiatus free from my whiny-ass, drooling, pigeon-toeing, stubborn, loud, hyper, albeit mostly adorable, kid.

On the agenda: soaking up tons of sun to make up for my vitamin D deficiency; wearing tank tops and flip-flops; enjoying inordinate amounts of laughter and reminiscing with my dear friend Seti, who is really more like a sister; more shits and giggles with my friend Elizabeth who, by the way, I have never met in person, and with whom I’ll be discussing, among other things, her daughter Sophie’s recent success with medical marijuana; a quiet train ride to San Diego to meet up with my brother Scott, who is flying in from Tucson to see me, my sister Caron, my brother Matt and his wife Stacey, and of course my eighty-four year old mother, Harriette.

Caron is hosting a belated birthday party for my mom, and inviting a few of her friends who know and love my mother and have watched her fade over the years. We’ll tease my mom about her boyfriend, Mike, who has taken her on motorcycle rides in the past. Mom will do things like try to eat off of other people’s plates, suck down wine from any and all abandoned glasses, stick her tongue out at us when we tease her, laugh at jokes and make some of her own. I’ll try to give Matt and his wife a bit of a break and help take care of Mom much as possible because, to a great degree, I know what it’s like to be in their shoes.

Then, the following Monday I’ll be saying good-bye to the California sun—it’s supposed to be in the seventies and eighties—to board the red-eye from San Diego home. At that point it’ll be one week closer to spring in Maine, one week closer to giving Calvin his first tincture of medical marijuana, and just hours away from hugging my boy, holding Michael close and petting Rudy, the ninety-one year old dog.

moms de guerre

He's had them at dinnertime, in the bathtub and in the johnny-jump up. He's had them in the hospital, at school, at the doctor's office, on the highway, in the grocery store and on an airplane 30,000 miles high. He's had them while walking and crawling and napping and eating. He's had them all day long and into the night. He's had them on Christmas day and Thanksgiving and on my birthday and Michael's birthday and probably on his own birthday. For almost two years he had these seizures exclusively between 5:00 and 6:30 pm. Now he's having them at 8:30 p.m. and 3:30 a.m. and, since yesterday, upon waking at 6:00 a.m.

They're silent these days, Calvin's convulsions barely perceptible, just the subtle click and swallow of a gag followed by a few constricted gasps for air. During the first half of all of them he stops breathing and his lips, fingers and toes turn blue. They last upwards of three to five minutes. It's hard to tell when they are over. His eyes roll then lock and then search the big black nothingness of the seizure. He looks frightened, lost.

He's had hundreds of them, likely thousands. Perhaps his hysterical laughter is a seizure; they call those gelastic seizures. Maybe when he is poking his eye he is having a seizure, or when his hands and ears turn crimson red or when he whines or cries or falls off balance or shrieks or stares incessantly at his fingers. We don't know for sure.

In all he's tried ten antiepileptic drugs plus two rigorous dietary therapies; none has stopped them from coming. The fact that puberty is on its way in a few years scares me. I fear his seizures will burn out of control like a wildfire unless we dampen them down now. Statistically, the chance another pharmaceutical will stop his seizures has dwindled to almost nothing, which is why I am trying to go green, hoping medical marijuana, which has helped so many other children with uncontrolled epilepsy, will work for him. It is legal in the state of Maine. I've got my card and I'm this close to getting the right strain and/or tincture for my boy, the kind very low or absent of any psychoactive qualities. But when I do, and if it works, we'll be incarcerated in this state, unable to travel legally with Calvin and his medical marijuana tincture without fear of being arrested for possession.

So, a small group of moms in Maine, we dragon moms, we moms de guerre—a term my friend Charlie came up with—have a friend who started a petition to legalize marijuana, to take it off of the list of schedule 1 drugs so it can be researched and readily available to our children, some of who need it—literally—to save their lives because nothing else works. We want it to be researched, to be able to receive the appropriate strains and tinctures in the mail and not have to uproot our families and become refugees in states where it is legal.

Please help us by signing this petition, then share it for others to sign. We need 100,000 signatures by January 28th, 2014 for it to be considered. That's nearly 3,400 signatures for every day in this month. Please click below and sign up. You could be saving a child's life, and you never know if that child just might be yours.

We petition the Obama administration to end the prohibition of marijuana by removing it from the list of controlled substances in the Controlled Substances Act.

a leg up

With Rudy in tow, plodding along at the end of his leash, I see my neighbor Mike slowly scooting himself into his truck. I wave and approach as he rolls down his window to greet me. Mike is ninety-one, and his wife died a couple of months ago. He lives next to Woody, my octogenarian friend who was widowed a few years earlier and who I visit every day or two to pilfer his candy jar before walking together in the fields.

Somehow, Mike and I always end up talking about politics. We have vastly different opinions on some issues while others overlap. Perhaps because of his height, he reminds me a bit of my dad, who would’ve been eighty-eight by now. Like my dad, having been raised during the depression, Mike’s stoicism and frugality are familiar, as are the way he keeps care of his cars, his house and his yard by using plenty of good old-fashioned elbow-grease. Although, when nursing his wife for months before she died, he had to let his yard go a bit, a legion of dandelions taking over in his absence. Seeing that he needed a hand with his burden, neighbors and friends pitched in to help him out.

This time, Mike and I get to talking about healthcare, jobs and taxes. With his elbow propped on the open window of his car door, he says, “Everyone should pay the same amount of tax, the same percentage.” With some healthy fervor, which Mike doesn’t seem to mind, I explain the flaws in his proposal—that, for instance, 20% of a poor person’s income cuts much further into basic necessities like food and shelter than it does for a wealthy person, and in that way a flat tax isn’t equitable. Mike reminds me that he came from a poor family, that his father, a hard worker, never made more than $3,000 in his life, but that they always made ends meet. “What about the guy who comes from nothing, works hard all his life and, as a result, makes millions?” he asks. I point out how the profits wealthy people enjoy come, not only from their hard work and initiative, but from the sweat of subordinates who, despite their effort, often live paycheck to paycheck. In my mind I imagine fast-food employees, migrant workers, garment makers and even nurses. I tell him that trickle-down economics hasn’t worked and that raising the minimum wage to a living wage would help hard working people get off of government assistance without killing jobs. “Many big companies are sitting on their profits, they’re not always investing in jobs, and they’re making millions and billions by exploiting others,” I say, and Mike nods his head as if in concession.

We talk about healthcare and of the junk insurance policies that have recently been dropped, the ones that shouldn't exist, the ones with lifetime caps and astronomical deductibles, the ones that exploit preexisting conditions and that don’t cover the cost of countless procedures, the ones that people pay for but get next to nothing in return—besides bankrupcy—when they become injured or ill.

We finish our conversation, Mike and I say so-long and as he drives off down the street he honks and waves. I stroll with my gimpy dog back home to my disabled, legally blind, seizure-ridden, autistic, nonverbal, developmentally delayed, drug-reliant son. I think of the cards Michael and I have been dealt, yet feel fortunate that we have affordable health insurance that can’t be taken away from us. I think of how we don't mind paying a little more in taxes so that others who aren't as fortunate as we are—people born into poverty or just simply down on their luck—can have health insurance, too. Because, besides being a human right, I understand that healthy citizens make a healthier community makes a healthier economy with fewer healthcare costs in the long run.

I wonder if the complainers, those in congress, and the powerful wealthy backing them, might feel differently about sabotaging—rather than improving—the Affordable Care Act if they spent just one day in the life of someone working a minimum-wage job with no health benefits and facing a family member's diagnosis of cancer. I wonder if they'd appreciate—and take—a leg up.

photo by Michael Kolster

reefer madness?

In my recent research of medical marijuana, I came across a report of a parent survey of cannabidiol-enriched cannabis use in pediatric treatment-resistant epilepsy. The entire report was quite intriguing, but what gave me goosebumps was typed at the end of the last page:

Quality-of-life surveys show that the adverse effects of AEDs (antiepileptic drugs) have as much of an impact on the patient's ability to enjoy life as the seizures themselves [20]. Our survey reports suggest that cannabidiol-enriched cannabis is behaviorally well tolerated and may have beneficial effects on cognition and mood. Many parents reported that their children experienced better sleep, increased alertness, and better mood while taking cannabidiol-enriched cannabis. These beneficial side effects are rarely reported with pediatric use of other AEDs [21]. Additionally, many negative side effects commonly associated with AEDs, such as irritability, insomnia, and aggressive behavior were notably absent from the parent reports on cannabidiol-enriched cannabis. Because of the apparent efficacy of cannabidiol-enriched cannabis, 12 parents reported weaning their child from other AEDs, thereby further increasing the child's quality of life by removing the negative side effects associated with those other AEDs.

Although each seizure Calvin has sends me into a state of despair, it's his hyperactive behavior from the drugs he has to ingest that takes its toll on me emotionally, not to mention how it must make him feel. And, so, it is with great hope that I am pursuing this form of treatment for my son, though it is not without misgivings; although it is legal in the state of Maine and Calvin will have a prescription signed by his pediatrician and a letter of recommendation signed by his neurologist and I will have a license from the Department of Health and Human Services to give it to him, it is still illegal at the federal level. This means we cannot take Calvin out of the state once he starts taking it.

For this we can thank a number of factors, beginning with damaging, exploitative propaganda such as the 1936 film Reefer Madness, which portrayed marijuana users as sex-crazed, murderous, suicidal maniacs. The film was originally financed by a church group and thought to be backed by the DuPont corporation, which saw industrial hemp as a threat to its business interests in wood-pulp paper and synthetic fabrics. Marijuana was further vilified by the racist mogul William Randolf Hurst, whose vast timber and paper mill holdings were also believed to be threatened by hemp. And, marijuana was maligned by Harry Anslinger, the first commissioner of the Federal Bureau of Narcotics, a close friend of the DuPont family whose department's funding might have been cut during the depression if not for the lies he told about marijuana's dangers to society. Sadly, America's puritanical base, the war on drugs and the pharmaceutical industry have all likely helped to perpetuate marijuana's false reputation and have stymied decades of research into its benefits for conditions such as MS, migraine, epilepsy, cancer, Parkinson's disease, diabetes, Crohn's disease, arthritis and autism.

Thankfully, it would seem that people are beginning to see through the lies and false propaganda and are giving medical marijuana, at the very least, a chance at saving lives. Do what you can to help legalize medical marijuana at the federal level, even if it is simply by opening your mind. Kids like Calvin are counting on it.

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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

friday faves - not nearly enough

As a child I remember my mother telling me, not infrequently, that she and my dad were lucky because, having had so many children, all of us were healthy. If she’d said it only once it might not have stuck with me the way that it did. I knew she was right; the odds were against us. I knew in part because we were friends with another swimmer family whose son had some sort of chronic kidney condition. I’m not sure if he might have been born missing one kidney, but it appeared, if that was the case, that it didn’t function correctly. He was a boy of small stature with a fantastic sense of humor, a kind, expressive face and a really cool, sort of gravely, voice. Tragically, he died quite young leaving behind a brother, two sisters and his grieving parents.

In that same, close, swimmer circle I had a friend whose beautiful teenage sister died from leukemia, a friend who was born with a progressive congenital visual defect causing her to slowly go blind, and my brother’s teammate had a sister who was born without arms and legs, just little nubs where her limbs should have been. There were children with ADHD who had to take speed to slow them down and a teenager who committed suicide perhaps because of a mental health problem, a drug problem, or both. There was even a man in his thirties, who came to swim at the pool most days, who’d lived with his mother his entire life and whose behavior seemed that of a child’s, perhaps mentally retarded or autistic. There was a boy in our neighborhood with juvenile diabetes and one that went to my high school who had cerebral palsy. He wore thick black-rimmed glasses and I recall seeing him often shuffle down the halls alone, his books clutched to his chest as if fearing he might drop them.

I thought about what my mother had said while walking Rudy across a blustery field. Hundreds of college athletes suited up in shorts and knee-high socks, shin pads, colored jerseys, helmets and cleats, were tossing and kicking balls or wielding hooked plastic sticks. A muscular, thick-thighed runner sprinted by on a gravely path. Calvin will never do that, I thought. We’ll never enjoy the athlete in him that his perfect body would have promised if not for his deficient brain, his seizures, the drugs. I’ll never see him hit a ball squarely echoing the satisfying crack that announces a warm spring day. I’ll never know the joy of watching him dart and weave through lanky boy bodies chasing a ball down a grassy field. I’ll never see his lithe body gracefully arch and pike through an imaginary hole in the water, or churn it beneath him, like an ox pulling turf in a field.

I know very well how fortunate I am to have sweet Calvin in my life—this pure, innocent spirit—to embrace and love and kiss. But once in a while, at times when I think raising Calvin is enough, all too much to bear, I find myself thinking and feeling and crying to myself, it’s not enough ... it’s really not nearly enough.

me with my five older siblings, circa 1965