huck finn

From 2012

We had the sky up there, all speckled with stars, and we used to lay on our backs and look up at them, and discuss about whether they was made or only just happened. Jim he allowed they was made, but I allowed they happened; I judged it would have took too long to make so many. Jim said the moon could ‘a’ laid them; well, that looked kind of reasonable, so I didn’t say nothing against it, because I’ve seen a frog lay most as many, so of course it could be done.

—Mark Twain's Huck, from The Adventures of Huckleberry Finn

In recent years I’ve been taken with reading and rereading the classics ... Hemingway’s The Sun Also Rises, F. Scott Fitzgerald’s The Great Gatsby, Nabokov’s Lolita, Harriet Beecher Stowe’s Uncle Tom’s Cabin, Salinger’s The Catcher in the Rye. I love them all. This time through Twain’s The Adventures of Huckleberry Finn, though, I am looking at the characters’ exploits from a much different perspective than when I was a youth.

The other day, after an entire day of wonderfully backbreaking gardening, I washed off my dirt-smudged face, pulled on some cowboy boots, donned my leather jacket and took off on a ride. She started right up with the kind of meaty, gravely purr I’ve quickly come to love. In some ways, driving my motorcycle feels liberating, like riding a responsive, obedient horse, bringing her to a gallop with the flick of a wrist—zero to fifty in no time flat.

Cool air rushed up my sleeves as I meandered down Mere Point past impressive granite shelves sprayed with heather and flox, trees caked with lichen, and some apricot-colored buds dotting a pine canopy. The air smelled fresh but of nothing else. Near the end of the road the sky opened up as did the land, and I could see across a clear-cut parcel to the water. At the boat launch I cut the engine and sat quietly gazing across the inlet.

Once the residual buzz of the motor gave way, my senses drown in the sounds of chirping birds, waves lapping the shore, and the sun on my face. At the end of a long pier, two lovers embraced as if they were alone in the world. The pier, with its weathered wooden slats, reminded me of the raft that Huck Finn and Jim floated down the Mississippi river. I thought about how their fantastic journey was as much about forging their companionship as it was about their physical adventure.

I studied the lovers—her pale arms contrasting with his black hair and shirt, their legs disappearing over the side of the pier, perhaps barefoot as I imagined Huck and Jim to be, dipping their toes into the water like I'd done before. The lovers remained as I shut my eyes and imagined Huck and Jim floating, tossing twigs into muddy water, fishing for their breakfast, building campfires, telling tales, getting to know each other's realities which were so very different and yet so perfectly matched, not unlike some fathers and sons.

I reminisced about some of my escapades as a young person and the curious friendships I’ve formed over the years. Then I considered, as I’m known to do, that my boy Calvin will never enjoy the luxury of getting into the minds and thoughts of other folks. And then a stream of consciousness overcame me . . .

he’ll never fish from a pier with his dad or build a campfire or sleep by himself under the stars or embrace a lover or tell a story or ride a motorcycle or captain a raft or talk with a friend about the origin of stars or read a book or write a word or cook a meal over hot coals and a flame or swim like a fish in a river or catch a firefly or gallop a horse or forge a friendship like Huck and Jim or the lovers or most anyone in the world or write a work like Samuel Clemens might have thought of doing when he was Calvin’s age.

Then I started up the engine and continued my own little escape up the road not far from the water's edge and under the invisible stars.

Thomas Hart Benton, A Social History of the State of Missouri: Huckleberry Finn (detail of north wall), 1936, Missouri Department of Natural Resources, Missouri State Museum.. From cover of Gerald Graff and James Phelan, Adventures of Huckleberry Finn: A Case Study in Critical Controversy (Boston, Bedford Books, 1995).

mother's day

Mother’s Day has often been bittersweet for me—not a day to necessarily celebrate—what with Calvin’s autism, chronic epilepsy and other disabilities, and my own mother’s slow decay from Alzheimer’s years ago. Yesterday, as usual, I experienced a mix of emotions thinking back to the day when Michael and I learned that our unborn child had something terribly wrong with his brain, that for some unknown reason—despite the healthiest of pregnancies—our baby was missing a significant amount of white matter in his brain. Those days leading up to and including his birth were some of the most difficult days of my life, and remembering them is painful.

As a child, on Mother’s Day, my siblings and I gave my mom funny cards, some store-bought, some not. My brother Steve once made her a wooden plaque in the shape of a shield sprayed green and gold with the words BEST MOM AWARD. She hung it on the kitchen wall for years. In junior high school shop class, I made Mom a groovy plastic flame-colored envelope opener and a wooden chopping block. On Mother's Day she often got flowers and plants and, later, Mylar balloons. Sometimes I drew her cards with birds and hearts and flowers that said, “I love you Mom.”

Every Mother’s Day, I know that none of these kinds of things will be mine.

But the first sound I heard yesterday morning was Calvin calling, “Uh-uh”—his way of saying “Mama.” I went to him, removed the netted canopy from his bed, unlatched and lowered the safety panel and crawled in with him. A huge smile spread across his face as he began showering me with hugs and kisses.

Mother's Day cards and gifts will fade or be thrown out, get packed up into some anonymous cardboard box in the basement or be lost in moves. Flowers will wither, balloons will deflate or sail away, plants will one day die. But these memories I have cuddling with Calvin will last forever, if not always in my mind, then in my heart, in the marrow of my bones, and mean more than any bit of material evidence I could glean from a son on Mother’s Day.

At least that is what I tell myself. 

joy of sport

i began swimming competitively at the age of six. in high school, i earned all-american honors as the lead in the washington state champion 400 freestyle relay. later, i was voted most inspirational and, as a senior, team captain. i then went on to compete for the university of washington (NCAA division I) and central washington university (NAIA) where i earned academic all-american honors and was voted team captain the year my team won the national championship.

i had some really great coaches along the way, including my big brother, scott, who helped me realize much of my potential at an early age. i wasn't always one of the better swimmers at that level (i trained with and competed against a couple of olympians), but when my heart was in it, and with the right coaching, i did okay, learned a lot about dedication and hard work, and realized how strong i could be.

i put myself through college by life guarding, teaching swim lessons and coaching summer league swimming and waterpolo to some incredible, zany, hardworking, talented kids between the ages of four and eighteen. i helped them go from being nearly last in the league of about thirty teams all the way to second place. i am still in touch with some of them, and they are still amazing.

after college i was chosen second alternate for the USA's northwestern region women's water polo team for the goodwill games.

though i worked for many years in the apparel industry as a designer, i often describe my coaching as the best, most enjoyable and rewarding job of my life.

in the last year i've taken up running in earnest and have done well competing in 5K, 10K and 10-mile races. i hope to one day run a half-marathon event.

well, thursday was my first day as a volunteer assistant coach for the topsham travelers kindergarten through 5th grade cross-country team of about 50 kids. i get to coach thirteen, or so, 5th graders, which thrills me, since i love tweens and teens. they're such rascals.

since calvin is not capable of participating in sports, this opportunity for me to coach, encourage and inspire children and to see their joy of sport is especially welcome. i get weepy just reading that sentence.

thursday was a total blast (thanks mary for taking care of calvin)! i had so much fun in the warm spring sun before some gorgeous, leaden clouds moved in and we got totally soaked just as practice was ending. i got to hang out with a few other great women who are also volunteer coaches. i led the entire group of kids in stretches, gave them high-fives, employed my ear-piercing finger-whistle with great effect, encouraged the fast and slower runners, praised them, gave a few tips on pace and form, taught respect and good listening. i wish somehow i could find the time to get a more regular coaching gig. it fills my heart with joy. maybe some day. for now, i'm simply gushing ... and terribly grateful.

caught in the downpour!

catching a breather

run—away, to, from, for something. feel alive. free. breathe. fly. skate. soar. smile. wave. weep. see—oceans, vistas, trees, owls, ochre leaves. smell hay, clover, salt, goats, sea. anticipate. hope. vibrate. sting. ache. forget. dream.

i've been trying to do all the those essential things, to take my own advice so i can do more than merely survive, but so i can thrive amid caring for someone with so many basic and dire needs as my son calvin.

but in reality, calvin, his caregiving, his advocacy, have always gotten in the way, which is why i haven't written in a while. i'm really sorry! i've been dealing with reams of calvin-related paperwork, a struggle with his school district over the problematic shift and significant cutback of his summer school, his ongoing doctor's appointments, blood draws, and diagnostic imaging meant to follow up on his previously broken hip, his pneumonia, his gallstone(s), and the placement of a stent in his pancreatic duct during an Endoscopic Retrograde Cholangiopancreatography (ERCP) procedure last month. but i finally found the time to catch a breather and write.

since calvin's ERCP, he has been doing pretty well. he hasn't had waves of that excruciating pain that landed us in the hospital on New Year's Eve, nor has he had a seizure in forty-one days—his second-longest stint in what is probably close to a decade! he seems to mostly be in good spirits, and is sleeping fairly well. he takes moderate doses of two newer anti-seizure drugs, xcopri and briviact, and i have cut his thca cannabis oil dose in half without any problems.

so, too, calvin's receptive communication seems to be improving. his ability to "tell" us what he wants (a bath, juice, to go outside, to get on the bus or go for a car ride) is also better. though it's not easy or fun, i'm focusing more on his profound autism, and looking for ways in which we can work on improving his problematic behaviors to make it easier for everyone to take care of him (i'd like to simplify his treatment).

as for my own personal non-calvin-centric endeavors, i've been running a lot and training for my first ten-mile road race, which is this sunday in portland, maine. i'm hoping for good things. i'm hoping it doesn't rain, though that isn't looking very promising. i'm hoping for a fast time. i'm hoping to see friends and meet new people. running has been a savior and helps make my life feel more okay.

and so, since i often feel like i need a break, a respite, a lifesaver, i'll hopefully be able to keep running and smiling and waving and weeping and, as often as possible, dip into nature to soak up all it has to offer, forget all the rest, and continue to hope, vibrate, sting, ache, forget, dream.

weekend update

At 3:30 this morning, Calvin had his first seizure in three weeks. Since beginning the drug, Xcopri, in November of 2021, he has been enjoying "longer" stints, including one seizure-free span of forty-five days. We haven't seen any focal seizures for over a year. So, despite a trip to the emergency room last April when he broke his hip at school, then having to undergo surgery to install three metal screws to fix it, and despite another trip to the emergency room on New Year's Eve for an excruciating case of cholelithiasis (gallstones), plus gastroenteritis and aspiration pneumonia, Calvin looks to be heading for his best seizure control in years.

As far as the gallstones go, Calvin had an endoscopic retrograde cholangiopancreatography (ERCP) procedure at the hospital on March 1st. After waiting for three hours in a type of holding cell, he again went under general anesthesia. The procedure, which involves the insertion of a scope into his esophagus, went fine, though the physician did not find the gallstone that was allegedly stuck in his common bile duct. Instead, what the doc found was "sludge"—bits of stones and/or fat, perhaps—which he cleared out. He also widened the sphincter where Calvin's common bile duct enters the duodenum, so that future stones can pass more easily into the intestine and are less likely to block the pancreatic duct, which can result in serious, sometimes lethal, consequences.

So, I guess one could say that the ERCP was successful. Calvin is eating well again and thankfully has not exhibited the kind of pain we saw him experience in December and January.

So, that's the update, folks, except to add that hopefully Calvin's seizure this morning will turn out to be a one-off.

Thank you for your thoughtfulness and well wishes. As always, they mean the world.

Calvin waiting patiently to be prepped for the ERCP

hope and trepidation

Tomorrow morning, Calvin and I will finally make our way to Maine Medical Center for his endoscopic retrograde cholangiopancreatography (ERCP) meant primarily to remove at least one gallstone that is stuck in his common bile duct and which probably caused the excruciating waves of pain and elevated pancreatic enzyme that landed him in the emergency room on New Year's Eve. Calvin has likely needed this procedure for weeks if not months, but it has taken this long to get it on the books because—although every radiologist who read Calvin's CT scans and sonograms reported seeing at least one decent-sized gallstone—one of Calvin's providers wasn't convinced. Eventually, the procedure was scheduled, but then Calvin brought Covid home, and we had to postpone the operation a week.

The ERCP is not technically a surgery. It is an endoscopic procedure during which Calvin must undergo general anesthesia. The gastroenterologist—one of only two in Maine who has the skill to perform this operation—will insert a scope through Calvin's mouth into his esophagus to look for ulcers, etc., then go on to remove the problematic gallstone, perhaps having to widen the common bile duct so it passes more easily.

This will be Calvin's fourth time under general anesthesia. In the past, he has faired well, but the risk of dangerous complications is far worse for someone like him who is neurologically compromised and prone to getting pneumonia which, by the way, he was diagnosed with on New Year's Day. The last time Calvin had to have general anesthesia was last April during surgery for the hip he broke at school (a clean break at the base of the femoral head) when his aides let him walk around by himself and attempt to sit in a chair, which he most regrettably though not surprisingly missed (his vision and coordination are not good).

It is hard to put into words how gut-wrenching and nerve-racking it feels to watch your sweet, nonverbal, cognitively impaired child be wheeled down a hallway with a bunch of strangers into an even stranger room (operating rooms are cold, chrome, sterile places) without any understanding of what is about to happen or why, and without mom or dad by his side to comfort him. To say the experience is worrisome is an understatement. It is the cause of great trepidation.

And so, using the gastroenterologist's patient portal, I wrote to the physician who will be performing the ERCP:

"can i stay with calvin until he goes under general anesthesia?"

The doc replied within minutes, "yes. you can stay with him."

I breathed a sigh of (some) relief.

With any luck, the procedure will go off without any hitches, Calvin will make it safely out from under the anesthesia without aspirating or suffering from too much irritability, and we'll be home sometime tomorrow late afternoon or early evening. Hopefully, Calvin will get some immediate relief from the prolonged pain and discomfort that this gallstone has likely caused him and, hopefully, he'll be protected, at least for a while, from the dangerous sometimes lethal effects that gallstones can cause.

Sadly, Michael cannot join us because it has not yet been ten days (hospital protocol) since his Covid diagnosis, and because he'd miss another day of teaching; I urged him into staying behind. Thankfully, one of my besties, Barbara, is going to drive me and Calvin to the hospital in Portland, and another bestie, Matty, will shuttle us back so I can attend to Calvin's needs on the drive home.

Until then, cross your fingers and toes. 

Michael, in white, escorting Calvin as far as allowed before Calvin's hip surgery last April.

reason and being, purpose and meaning

I watch as a boy of five or six falls off of his bicycle. Somewhat remarkably, he lands squarely on his hands; his feet quickly follow. Having escaped injury, he rises and claps triumphantly, then begins to do a goofy, self-styled boogie, which is perfectly annoying to me. The caption on the video reads, "This should be your reaction when life challenges you."

For starters, I'm not a fan of the word, "should." I try not to "should" anyone, including myself. The rest of my cynical response to the video was—like most things—informed by my profoundly disabled, nonverbal, seizure-prone son. Calvin had just come off of a very shitty few weeks which began with back-to-back grand mal seizures, followed by waves of excruciating pain of unknown origin, the likes of which reminded me of Hollywood torture scenes. Ultimately, Calvin landed in the emergency room on New Year's Eve with an agonizing case of viral gastroenteritis and/or a problematic gallstone, which—after reviewing X-rays, a CT scan, and several blood draws taken at ungodly hours—the doctor said had likely caused the aspiration pneumonia in Calvin's left lung. We were released from the ER the following morning, and though I was relieved to be out of there, I didn't feel like dancing a jig; I felt only grateful that it seemed we may have dodged the latest bullet in Calvin's lifelong barrage of them.

Calvin reminds me daily that not everyone is equipped or inclined to celebrate or give ourselves high fives after life's nasty pitfalls, even if we eventually land on our feet. Sometimes, some of us come away from challenge and hardship feeling confusion, guilt, insecurity, anger, angst, resentment, exasperation, despair. My first reaction to the dancing boy was to acknowledge that not everyone is sailing along in life in the first place, or lucky enough to avoid misfortune such as hunger, war, poverty, displacement, abuse, injustice, depression, the death of a child, or one born to a life of profound physical and cognitive limitations and miseries, like Calvin. Call me a Debbie Downer for criticizing what some might consider a harmless, light-hearted video. I mean, I get the gist, and I'm generally an upbeat optimist who sometimes even welcomes challenge, however, I look at certain subjects through a more serious lens than others.

The video also reminded me of the countless times people have told me that everything happens for a reason. Though the sentiment is meant to be comforting, I generally respond by disagreeing, then go on to explain my preference for the notion of gleaning great purpose and meaning from life's hardships (a practice which can also be elusive to some) as opposed to there being some mysterious reason baked into every awful thing that happens. If I probe, some folks claim that bad things happen to teach us lessons. I usually respond by telling them I am not worthy of my son's suffering. Others say we can't know the reasons for mishaps and tragedies, but that God has a plan. I'm always left wondering: if there is an omnipotent god with a plan for everything, why does it so often include godawful misery, and how is that not deeply disturbing if not unthinkable? Would an all-powerful god orchestrate every little scrape and bruise I get and/or the immense suffering my son endures? Does God stage and sanction starvation, war, genocide? What kind of god has a reason—and what in God's name could that reason be—for the torture of "his" beloved children at the hands of others, or from excruciating illnesses? And if God isn't responsible for orchestrating horrors such as mass shootings, catastrophic fires, floods and earthquakes, then why doesn't "he" rescue us from suffering? Even we puny humans will do virtually anything in our power to save our children from pain. Why doesn't God? And if there is a reason for everything, what does that say about the notion of free will? Lastly, some people say God is testing us, and my immediate response is to ask: for what purpose? To what end? Is God conducting some test of fidelity, and if so, what deep conceit does that reveal? And what would be the point of testing us, knowing we are impossibly fallible beings?

I've found myself ruminating over the bicycle-boy video and related conversations for weeks, and I'm taken back to my childhood. Despite being raised Catholic, I began doubting the existence of a merciful, omnipotent god when my best friend's two-year-old sister nearly drowned in their nearby swimming pool. I had been outside when I heard the dog barking and the mother discover her baby girl lifeless in the water. I had never heard a grieving human shriek and howl so animalistically. She fished her daughter out of the pool and resuscitated her. The child survived, but was in a coma for at least a week and emerged from it no longer a toddler, having lost every one of her acquired skills. Her recovery, while not utterly complete, took years. I'm surprised her mother survived the ordeal, and I wondered if she felt as if God were punishing her for some petty transgression. It didn't make sense to me that a merciful god would allow any of "his" flock to suffer and grieve so deeply. It all seems so utterly senseless.

In continuing to ponder the theory that everything happens for a reason, I wondered if maybe that reason is merely that we exist. Perhaps it's as plain and simple as that: we exist, and therefore things happen to us. It seems reasonable that all things great and small, as in nature—rain, sunshine, hurricanes, earthquakes, moss growing on trees—just occur without any divine reason. In other words, as the saying goes, shit just happens. It makes sense to me—and frankly is far more comforting than the notion of a god with a secret plan sitting idly by while we are tormented—that our every move isn't governed, decided, judged and orchestrated by a god. And, too, maybe overcoming life's nasty challenges and curveballs isn't always reason for smug celebration, but rather, a time for reflection, gratitude and humility, especially considering so many of our fellow beings, through no fault of their own, live in a world of misery.

Photo by Michael Kolster, August 2021