depth perception

In high school, I had a handful of very good teachers who disciplined me in the subjects of English literature, creative writing, math, history, Spanish and anthropology. I remember them—the best ones having wicked senses of humor—as much, if not more than the details of the subjects they taught.

Very recently, I reconnected with my anthropology teacher, Thad McManus, on Facebook. I didn’t know him well and I doubt he remembers me at all, let alone as one of his most sophisticated students. I was the jock who sat near the front of the class with wet hair in an over-sized varsity letterman's jacket.

Over the years, I’ve often recounted something I learned in McManus’s class, something about perception. We’d been assigned a book to read by an anthropologist who had spent years living amongst a Pigmy tribe inhabiting the dense rainforest of Central Africa, Indonesia or Papua New Guinea, I can’t recall which. The author described a day when he took his friend, one of the tribe’s elders, beyond the rainforest onto an open plain, a place where no tribe member had ever been. The two men perched themselves atop a high bluff overlooking a valley where, off in the distance, a large herd of water buffalo were grazing. The Pigmy elder reached out and tried to pinch several buffalo between his fingers, thinking they were ants. It became clear to the friends, and later to my classmates and me, that the Pigmy people hadn’t fully developed their depth perception due to the density and sameness of the forest in which they lived.

This image stuck with me and has, over the years, helped me to understand how often people’s perception is limited to their own experience, to who they are and what they see in their immediate surroundings, in their neighborhoods, on television, in the books they read and in the news sources they choose. I witness this kind of insularity when it comes to my ten-year-old son Calvin, a rarity who is severely disabled, can’t talk, walks poorly and peculiarly, wears diapers and is often prone to fits of mania due to impending seizures and to the powerful antiepileptic drugs he must take. I sense it when strangers stare at us—even glower at us—when he is shrieking or simply stumbling past. I sense it with people's puzzlement over the fact we didn’t have more children when we found out Calvin would be disabled. I sense it when people say everything happens for a reason or that Calvin's suffering is meant to teach us something, or when doctors tell me not to overreact or bristle at my insistence. I sense it when people question my hypervigilance, my frustration, my impatience, my anger. Because of their shortsightedness they aren't seeing the big picture—why I am who I am, why I act how I act, why I parent like I parent—because they don’t live with and love a disabled, chronically ill child. Thankfully, there are the insightful ones who choose to look beyond their own experience to see and feel our world and, thus, can empathize.

So, too, I sense a deficit of earnest perception surrounding the recent events in Ferguson—the shooting of the unarmed black teenager Michael Brown, the subsequent decision not to indict the white police officer who killed him, the protests, peaceful and otherwise, and the fallout in the news, on talk radio, in coffee shops and classrooms and on social media. What has come into sharp focus for me is that many Americans aren't seeing past their snug environs and are in great denial of our nation's systemic problem with racism. Others don't appear to give a shit. What I see a lot of is this: standing ground; slinging armchair indignities (think Archie Bunker); blaming and dehumanizing the black victim; characterizing the Ferguson killing as an isolated incident thereby rejecting the epidemic of racism; derailing the discussion of white cops killing unarmed blacks into a reproof of black on black crime (itself a product of the systematic oppression of minorities); ignoring our nation’s gross, racist inequities in housing, education, employment, income, law enforcement, imprisonment and sentencing and escaping down the comfortable path of scapegoating.

But when we step out of the shadows and the shade of the forest we can see the bigger picture, one that is vast, varied, colorful and perhaps difficult to understand unless we are willing to take a closer look. With a morsel of scrutiny we can see an establishment that is stacked against an entire race, a people systematically exploited in the days of slavery and whose descendants, for whatever lingering bitterness, profit, power or cruelty, continue to be quashed.

Thirty-three years after my high school graduation, I find myself back in the classroom, though not to study anthropology. I'm here to tell Calvin's classmates about him and about epilepsy. When I visit the students I always end our discussion by saying that Calvin is the best person I know, in part because he doesn't have a mean bone in his body. I tell them to be kind to others who are different from them, because it is a great big world out there and no matter who we are, what we look, sound or act like or where we are from, it is important to understand and remember that inside we all have the same heart. To do this is to beautifully utilize the full depth of our human perception, which allows us to see other worlds and realities with open eyes, minds and hearts.

photo by Michael Kolster

mom at bedside, appears calm

Written by Suzanne Koven, M.D.

We carry a nylon lunch bag everywhere we go, royal blue with purple trim, containing two plastic syringes, each preloaded with 5 mg of liquid Valium, plus packets of surgical lubricant and plastic gloves. At the first sign of blinking or twitching, we lay him on his left side, tug down the elastic waist of his pants, part his small buttocks, and insert the gooped-up tip. Within moments, the motion stops, as if an engine has been switched off. Then he falls into a deep sleep. When he relaxes, so do we.

He's 5 years old, the first time. Our babysitter takes him to a pizza place for lunch. He laughs mid-slice, blinks his eyes several times, slumps to the floor, and climbs back onto his chair. She hesitates—what was that?—and then calls 911. She pages me. I keep the message stored in my beeper, periodically daring myself to relive my first reading of it.

I meet them in the ER at the community hospital near our home, showily flashing my downtown hospital ID tag. Soon my husband rushes in, wearing the ID from his downtown hospital. All the tests are negative, they say. Bring him back if something else happens.

Something else happens. The next day, I skip work and keep him home from school. He sits happily in front of cartoons while I pace and polish, pace and fold. Maybe the babysitter overreacted, I reason. Maybe he's just a goofy kid. The moment I stop watching him, he cries, “Look, Mommy! Look what my hand can do!”

Downtown. No mistaking it this time. Grand mal, big and bad, right on the gurney. Lumbar puncture. MRI. All negative. Before we go home, the neurologist asks if we have further questions. “Just one,” I say. “What do we do if he does it again?” The neurologist seems surprised. His raised eyebrows silently ask, “Aren't you both doctors?” He hands us a pamphlet.

Dilantin. Chewable yellow triangles three times a day. Triangles to first grade and the beach and day camp and a sleepover. The other kid has cochlear implants. “Don't worry,” his mother says, accepting my baggie of pills. “My kid comes with instructions, too.” We become members of an exclusive club no one wants to join.

One day, almost exactly a year later, the school nurse calls. “It's been 10 minutes and it's not stopping,” she says. I'm home that day and I screech over in seconds, leaving one tire on the schoolyard curb. He's in the nurse's office, lying on the plastic divan reserved for kids with sore throats, bellyaches. Fakers. I know what this is called, this shaking that will not stop. I know how to treat this, in adults. But all I know now is how to hold him, jerking, foaming, soaked with urine.

In the ambulance, the foam turns bloody. I ask the ponytailed EMT whether he will die. She pretends not to hear, turns to adjust his oxygen. At the local ER, I bark  instructions. “He has a neurologist downtown,” I say. “He needs to be transferred.” The ER attending, who has been bending over him with her lights and sticks, straightens. “I think,” she says, not unkindly, “Mom needs to wait outside.”

Tubed, taped, lined. Ready for transfer. There is one last thing. The ponytailed EMT hands me a specimen cup in which the source of the blood that had burst my heart open rattles. “Here, Mom,” she says, smiling. “For the tooth fairy.”

Back at home, 40 pills a day, crushed, on spoons of Breyers cookies-and-cream ice cream. Still he blinks and shakes, shakes and drops. The weeks go by like a slow and sickening descent, landing on the carpeted floor of the playroom in our basement. We spend most of the day there because it's the only place in the house where he can't fall down the stairs. At night we tuck him tightly into Star Wars sheets but still find him on the floor in wet pajamas. If the Valium fails, we call 911. A fire truck arrives with the ambulance, and the firefighters, with their giant boots and helmets, crowd along with the EMTs into the small bedroom our boys share, delighting our younger son.

He is admitted. He is discharged. He is admitted and discharged again. Admitted. Discharged. Admitted. Discharged. Admitteddischargedadmitteddischargedadmitteddischargedadmit-teddischarged. My husband, too tall for the fold-out-chair bed, takes the day shift. I pad in slippers through the hospital at night with the other parents. We buy one another coffee. We commiserate. I grow more at ease in this sleepless company than with anyone else — my family, my friends, my medical colleagues. I also cling to the nurses, Jen and Sarah and Kristen and “the other Jen,” as we call her. One leaves my son's chart in his room, and I sneak a look. “Mom at bedside,” a progress note reads. “Appears calm.”

Finally, a break. The sixth or seventh MRI shows a subtle irregularity in the right temporal lobe, possibly a tiny tumor, a focus. We love the very word “focus,” a raft of hope in a vague and endless sea of anxiety. Never have parents been so happy to learn their child might have a brain tumor.

The surgery works. The medications are discontinued. I don't ask to read the pathology report, the operative note. I am startled by my lack of medical curiosity. I wish to know nothing other than that my son no longer shakes. After the staples come out, we pile into the car and take a 9-hour drive — unthinkable during the previous months — to visit my in-laws. On the way home, my husband glances at the back seat through the rear view mirror and, returning his eyes to the road, says, “He's blinking again.”

A second surgery. A third. This time, we're lucky. “The luckiest unlucky parents ever,” I joke.

Years pass. We renovate our kitchen and find the lunch bag with two dried-up syringes of Valium in a cabinet about to be torn down. Our emaciated boy doubles in weight and then doubles again. He graduates from high school. He graduates from college. He moves away from home.

I do not know how much he remembers. He rarely speaks of those years, except to comment on whether a barber has done a good or not-so-good job of hiding the scars.

As for me, occasionally my terror will snap to life again, as if I've been holding it by a long and slack tether. It happens when I am walking through the peaceful, leafy streets of our town, pumping my arms, working my aging heart and muscles, quieting my busy mind. A siren sounds. An ambulance appears. Though I know from reading the log in our local paper that the emergency is rarely dire — a dog bite, an asthma attack — and I know that my son is nowhere near, I still stop to see which way the ambulance is heading.

People ask, “Is it easier or harder to have a sick child when both parents are doctors?” But this is the wrong question. There is no hard, no easy. Only fear and love, panic and relief, shaking and not shaking.

Me and Calvin in the hospital after a dangerous, prolonged seizure, probably not unlike the author and her son.

giving thanks for . . .

thanksgiving. calvin. words on a page. charity. rain. kisses. cheese bread with butter. long, warm autumns. fluffy nellie dog. humor. chef michael. dry-brined turkey. memories of dad carving it. diversity. cannabis oil for calvin. seizure-free days. a little extra sleep. mashers. pumpkin, pecan and apple pies. friends, new and old. mellow child. cranberry sauce and gravy. generosity. candle light. love. bourbon on ice. altruism. mom. curried butternut squash. children. the clink of glasses. teachers and helpers. potus. gifford's old fashioned vanilla ice cream. barbara. ambient light. music. wit. fires in the wood stove. roasted brussels sprouts with parmesan and truffle oil. progressive thought. red wine flowing. a job, a house, clean water and electricity, food on the table, clothes on our backs. leftovers.

a better world

I wish this were a better world, one in which my ten-year-old son didn’t seize all night long—like the other night—and have to be pumped full of addictive drugs that make him feel like crap yet do nothing to improve his condition. Nights like these, when I lie awake next to him for hours listening to him breathe, listening to his heartbeat, make me think of the world and others struggling in it.

I wish this were a better world, where cops and bigots didn’t kill innocent, unarmed black men, women and children nearly every single day, where a blood-orange sunset doesn't remind me of bleeding streets, wailing mothers and burning eyes. I wish this were a world where true justice could be served, a world void of those who deny the racism that soils our society—racism as ubiquitous as the effing turkeys on our Thanksgiving tables. I wish this were a world where more white folks humbly acknowledged the privileges they enjoy and take for granted, a world where they denounce the systematic oppression of minorities, the mass incarceration of black men, the voter suppression, the fear mongering, the scapegoating, the bitter contempt of people most whites know little to nothing about save the disparaging images permeating the news and the vile comments on social media. I wish this were a world where more people were seriously introspective and empathetic, then cared enough and had the spine to incite change. Because from my perspective, as long as I have lived, not enough has changed.

I wish this were a better world where neighborhoods, cities and countries weren’t divided by walls, where everyone had a home, a world in which those homes weren't torn down or chewed up and swallowed by the greed of others. I wish this were a world where everyone had enough food to eat. I wish this were a world where oligarchs didn’t rule the land, where poverty and ignorance didn’t exist, where congressmen couldn’t be bought, where millions of our citizens weren't systematically disenfranchised. I wish this were a world where the heads of corporations didn’t pocket enormous profits on the backs of people who don't receive a living wage for their toil.

I wish this were a better world where people could hope and work for change without hearing flabby platitudes issued by hardliners like, "love it or leave it." I wish this were a world where every baby born, no matter how wealthy or poor, had access to a good education and proper health care, a world where everyone had the same opportunities, because—whether you choose to believe it or not—we don't. I wish this were a world where the self-righteous didn’t impose their beliefs and preach their moral superiority, then turn around and act so ugly, hateful and contemptuous to people who they don't even know or care to understand.

I wish this were a better world, one in which—if he were healthy, normal and seizure free—my son Calvin would grow up and feel good about living in and, if it wasn't, he'd do his best to make it that way if for no other reason than it's the right thing to do.

Detroit, 1967

Ferguson, 2014

watching and waiting

Today is the eighty-first day since the last time Calvin had one of his typical, daytime, bath-time, three-plus minute, tonic-clonic seizures, the kind where he convulses and turns blue. Other than a couple-few, seconds-long, early morning partial seizures, Calvin's daytime seizures have all but disappeared. We can't be certain exactly why, but everything seems to point to the homemade THCa cannabis oil I've been giving Calvin during the day since late last February. The evidence is even more compelling considering we have weaned him off of over 50% of his benzodiazepine, clobazam, beginning last April.

In general, with the exception of dealing with a hysterical kid in the days preceding a big seizure—all of which are now occurring every seven to ten days in the middle of the night and/or just before dawn—Calvin is calmer, more well-mannered, more patient when he sits in our laps or when we ask him to wait, and is walking and attending to things far better than before starting the cannabis oil.

A little over two weeks ago, with the hope of eradicating Calvin's nighttime seizures, we began supplementing his regimen with a few drops of CBD cannabis oil at night and in the morning using, as a base, a honey-oil resin from our local dispensary to which I added MCT (medium chain triglyceride) oil. The oil is not fully decarboxylated (heated to eliminate the acidic compounds from the cannabinoids) so it is still rich in CBDa and slight in CBD (cannabidiol), the cannabinoid considered by some to be most useful in combating epilepsy. I figured I'd try giving it to Calvin anyway. Unlike pharmaceuticals, I'm not afraid to experiment with different forms of cannabis, particularly since I'm fairly certain the cannabinoids in them work best synergistically. The dispensary is working on more fully decarboxylating the honey-oil and when they do, we will likely switch to that.

In the meantime, we are watching and waiting. Today is day six since Calvin's last seizure. I'm hoping that the CBD is building up in his system and might soon work to thwart future ones. Only time will tell. If it does work, we'll resume his benzodiazepine wean hoping to get him completely off of the clobazam within six to nine more months, perhaps sooner.

Today, Calvin went to school happy. His morning was pretty relaxed, full of smiles, hugs and kisses for me and Michael. His balance has been amazing and yesterday he walked all the way to the fields—and then some—and back again before joining us at a crowded grocery store to walk some more and to bang and mouth the cold, glass refrigerator doors.

I'm feeling thankful these days, and I'm crossing my fingers.

Calvin waiting to bowl, photo by Mary Booth Scarpone

a sorry state

Epilepsy affects 65 million people worldwide and about one in 100 Americans, over 500,000 of them being children.

One in twenty-six Americans will be diagnosed with epilepsy at some point in their lifetime. 

Each year, as many as 50,000 Americans die from epilepsy and related causes, such as drowning and head injuries—more than die from breast cancer.

Over 200,000 Americans are diagnosed with epilepsy each year.

For seventy percent of those with epilepsy the cause is unknown. 

Over thirty percent of people with epilepsy do not have their seizures controlled using medication.  

People with epilepsy live their entire lives tethered to the terrible side effects of anti-convulsant pharmaceutical drugs.

It's a sorry state when something so pervasive and damaging as epilepsy gets so little attention. Please give to CURE epilepsy at http://www.calvinscure.com

mother of exiles

The New Colossus

Not like the brazen giant of Greek fame,
With conquering limbs astride from land to land;
Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
Mother of Exiles. From her beacon-hand
Glows world-wide welcome; her mild eyes command
The air-bridged harbor that twin cities frame.
 
"Keep, ancient lands, your storied pomp!" cries she
With silent lips. "Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!"

—Emma Lazarus

In 1903, the poem was engraved on a bronze plaque and mounted inside the lower level of the pedestal of the Statue of Liberty.

Like most Americans, my ancestors were immigrants, some making the long and treacherous journey to escape the perils of Ireland’s potato famine, others traveling from Spain and landing on Sir Francis Drake Beach north of what is now San Francisco. They left their families and risked their lives to make a better future for themselves and their loved ones in a land that was not theirs but that became home. Millions had come before them and millions followed, making this a great nation of immigrants, rich in diversity and in its stories of struggle, courage and hope told by immigrants and born of survivors of Native American massacres and of the ugly scourge of slavery.

Recently, I had a conversation with a woman about the decades-long wave of undocumented immigrants coming to this country to make better lives for themselves and for their children and as refugees escaping the murderous threat of drug cartels, child labor, human trafficking and hunger. They come to work hard and to contribute. They come bearing hope. She complained that these immigrants don’t pay taxes, so I pointed out that indeed they do, at the very least paying sales tax while many also pay income tax. Later, while discussing a different topic, she admitted to not paying taxes on the tips she makes at work. I tried hard to grasp her rationale, which to me seemed like a double standard, but I came away more perplexed than when we began, and it lead me to check myself for hypocrisies in my own behavior, which no doubt I have.

Lately, I've heard a rash of folks grousing about undocumented immigrants living in this country. It’s always the same list of gripes: they don’t speak English; they don’t work; (and yet) they’re taking our jobs; they’re on the dole; they’re criminal; they don’t pay taxes; they don’t contribute. I wonder if these protesters personally know any undocumented immigrants and where they get their information. Perhaps they employ them, underpaying them to pick their fruit, pack their meat, clean their homes, care for their children.

I remember a conversation I once had with an American man who said that Mexicans—who make up the largest group of undocumented immigrants living in this country—are a bunch of lazy crooks. He’d come to the conclusion because he’d briefly visited a large Mexican port city and had either been pick-pocketed or had heard that pick-pocketing was rampant there. I pointed out that all major port cities worldwide are likely rife with con artists. I asked if he knew any Mexican people, had any Mexican friends, and he refused to answer. I asked why he thought Mexicans were “stupid and lazy.” He replied, “Just look at the state of their economy.” I asked him if he thought Depression-Era Americans were stupid and lazy. He didn’t answer and instead turned his back and walked away.

The stories I’ve heard of undocumented immigrants are of people no different than ourselves. They're hard-working people, men, women and children hoping for a better life, hungry people, ambitious people, good people, loving people. They risk their lives, just like our ancestors did, to make a better future for themselves and for their families. I imagine if I lived a life like theirs and if I were desperate enough, I would do the same for Calvin and for myself. I'd risk crossing that border and hope with all my heart that I'd be given a chance to prove myself, a chance to contribute, a chance to thrive in this place we once lovingly and proudly thought of as the Mother of Exiles.