american dream (two paths)

I dream at night of San Francisco, but it's not the town that was my home. I dream at night of my husband, but he's not the man I know. I dream of movie stars and strangers falling in love with me. I dream of ex-sweethearts, but they're not like I remember. I dream of Calvin speaking, but also of him seizing. I dream of fleeing an America I don't recognize—a quarter million dead and thousands of others dying, Confederate flags, internet trolls, deceitful leaders, social unrest, jobless, hungry, homeless, sick Americans.

But my eyes are wide open; it's not a dream at all.

The other night, after Calvin's worst day in a long time, I laid awake thinking about a movie Michael and I had just seen called 20th Century Women. Near the end of the film was a clip from President Carter's 1979 Crisis of Confidence speech. So moved, the next day I went online to watch and then read the entire speech. As I did, I felt as if he were speaking about the coronavirus pandemic, its trivialization by some, and its reckless handling by the current administration. It felt as if he were addressing the current political climate—the pugilistic presidential election, the recent and regrettable Supreme Court fight, the deadlock in the Senate, the spread of election disinformation, the disenfranchisement of Americans, and the polarization and divisiveness in our nation. Here are some excerpts which struck me:

I want to talk to you right now about a fundamental threat to American democracy.

The threat is nearly invisible in ordinary ways.

It is a crisis that strikes at the very heart and soul and spirit of our national will. We can see this crisis in the growing doubt about the meaning of our own lives and in the loss of a unity of purpose for our nation.

Our people are losing that faith, not only in government itself but in the ability as citizens to serve as the ultimate rulers and shapers of our democracy.

President Carter went on to say:

The people are looking for honest answers, not easy answers; clear leadership, not false claims and evasiveness and politics as usual.

You see a Congress twisted and pulled in every direction by hundreds of well-financed and powerful special interests.

You see every extreme position defended to the last vote, almost to the last breath by one unyielding group or another. You often see a balanced and a fair approach that demands sacrifice—a little sacrifice from everyone—abandoned like an orphan without support and without friends.

We are at a turning point in our history. There are two paths to choose. One is a path I’ve warned about tonight, the path that leads to fragmentation and self-interest. Down that road lies a mistaken idea of freedom—the right to grasp for ourselves some advantage over others. That path would be one of constant conflict between narrow interests ending in chaos and immobility. It is a certain route to failure.

All the traditions of our past, all the lessons of our heritage, all the promises of our future point to another path—the path of common purpose and the restoration of American values. That path leads to true freedom for our nation and ourselves.

Carter's words resonated with me deeply, and rereading them I was nearly brought to tears. I imagined the two paths he mentioned—two Americas, really—one of them rising high toward healing, reform, unity, inclusiveness, diversity, compassion, decency, and justice, the other descending deeper into cynicism, intimidation, chaos, bigotry, selfishness, poverty, illness and lonely, unnecessary deaths from a runaway virus.

I hope in this election we, as a nation, abandon our worst impulses and fears and choose the high road—the path to an America worth dreaming of and fighting for—one glowing with hope and light and integrity, an America not just for some of us, but for us all.

Vote!

ice cream sundays

Inevitably, on Saturday and Sunday morning walks with Smellie, one neighbor or another will ask if I have any big plans for the weekend. My answer is always the same: nope.

 

With a kid like Calvin, most kinds of outings are difficult and others, especially during a rampant pandemic, are impossible. We are faced with major stubbornness if we try to take Calvin for walks on the beach or in the woods, so we pretty much never do that anymore. We no longer take him to the grocery store because he won't keep a mask on his face and he drools on and touches everything with fingers that go directly into his mouth. We almost never go on overnights because we can't be sure of securing a safe place for him to sleep, and though it has been years since he has been hospitalized for prolonged seizures, that fear is always in the back of our minds.

So, a typical weekend day for us starts at the same time as every other day, between 5:30 and 6:15, which is when we have to give Calvin his time-sensitive anti-seizure medicines. Michael makes coffee for us and breakfast for Calvin, reads a bit of news then goes for his 5K. When he gets back, I often make eggs and toast for everyone, then I take Smellie for a walk. After showers, we go for a car ride. On Saturdays, we venture to the next town over to pick up a freshly-baked baguette, then stop for a spell at the boat launch where we watch the Kennebeck river in its various stages of calm and choppy. Once in a while, we get the spot all to ourselves. Mostly, I stay in the car feeding Calvin and, if there are no boats, Smellie ventures into the water. On mild days we all get out for a bit to let the sun warm our weary bones.

 

Once home, Michael heads off to his studio for a few hours to develop film, make pictures, prepare for the week's classes or work on his next book. On days after a seizure, like today, Calvin spends most of the day napping in my lap on the green couch. Michael usually comes home early to hang out with us before making dinner.

Sundays are nearly carbon copies of Saturdays with the exception that we get ice cream from the drive-thru just after it opens. On the drive home, I feed everyone a few bites of one of our favorite flavors—gingersnap, coffee oreo, mint oreo, blackraspberry, chocolate peanut butter cup—then put the lid back on and save the rest for later. 

Pandemic or not, these are our weekends—mundane, highly limited, predictable and yet satisfying—and will be for the foreseeable future.

Michael walking Calvin down the dock a few weekends ago.

breathe deep

i tell myself often: breathe deep. forgive. forget. release regret, resentments big and small. abandon fear and angst if possible. practice compassion, kindness, respect, inclusiveness, gratitude, humility. expect successes but allow yourself to fail. imagine. wonder. create. explore. find a perch or cave from which to ponder the world. reflect. muse. hold onto hope. lose yourself. take risks, as long as you don't hurt others. founder, but move forward with as much grace as you can muster. embrace others. listen and live awhile in their shoes.

gift givers in a pandemic

In the months since the pandemic began, we've received all sorts of gifts from friends, neighbors, Michael's former students, childhood buddies and perhaps even strangers: a framed painting of Smellie, a pot of paperwhites, bags of homegrown tomatoes, green beans and white cucumbers, tiny raspberries and strawberries, garden bouquets, a photographer's self-published book, fancy beers, black trumpet mushrooms, kerchiefs and clothes for Calvin, dozens of oysters, fragrant eucalyptus fronds which remind me of San Francisco, jars of peanut butter and honey, bottles of rye, bourbon, wine and bubbly, homemade liver pate, artisanal loaves of bread and cheese, orchard apples, apple pies, dog treats, carrot cake, caramel chocolates, coffee, homemade granola, soup and spice cake. Have I forgotten anything?

No doubt these lovely gifts and their givers have lifted my spirits in the midst of hard times taking care of a teen who can do absolutely nothing by, or for, himself. Sometimes, I get a glimpse of the gift givers, but can't always catch them before they disappear. Other times, I visit with them for awhile from the porch as they stand at least eight feet away, often wearing a mask. No doubt for years, the love, affection and caring from friends and neighbors has sustained us. We are part of an amazing community. I've heard it said that it takes a village to raise a child. The fact that we are still here and in relatively good condition, despite the clusterfuck (sorry Gma) that is epilepsy, is a testament to that adage.

In the midst of this rampant pandemic, I feel doubly grateful to live in a state that is doing a good job of controlling Covid-19 levels. In my town and in nearby ones, I see most folks wearing masks in public. The first-year college students at Bowdoin are probably setting the best example, wearing their masks outdoors in groups or putting one on when they pass me on the sidewalk, fields or trails in the woods.

Nearly ten months into this pandemic, cases of coronavirus are rising in almost every state of the nation. Yet weekly, I still hear interviews with people who balk at the notion of wearing masks in public, despite the overwhelming epidemiological evidence that masks are one of the best methods to stop the spread of the virus. Don't they understand that by not wearing a mask—whether they feel healthy or safe or somehow immune—they may be endangering the well-being and lives of others?

Like gift givers, we wear our masks for others more so than for our own protection. That's how it works. Regrettably, mask skeptics cling to the selfish narrative that we all have to take personal responsibility for staying safe from the virus. But, as Americans, isn't our responsibility to be accountable for each other? Isn't that what community means—having each other's backs, watching out and taking care of one another? That was what New Yorkers did when the Twin Towers were attacked on 9/11. It's what people did in the wake of hurricane Katrina. It's what demonstrators of every color, class and creed are doing to protest police violence against Black people. It's what folks are doing during the Western wildfires. We are at our best when we help each other. Why should a threatening, runaway and lethal pandemic that has killed over 220,000 Americans be any different?

Some in this nation still stubbornly subscribe to the myth of rugged individualism and its regrettable mantras such as Every man for himself and Don't tread on me. They insist that the simple act of wearing a mask infringes on their personal freedoms or think that it's somehow a sign of weakness. Whatever happened to the notion of personal sacrifice for the sake of others? How did it come to pass that some well-off Americans value their 401Ks more than their fellow Americans' hunger, homelessness, poverty, illness, injustice, everyday struggle? How did a chunk of our nation's people become so hardened, thoughtless and reckless at the expense of their neighbors?

I like to imagine an America in which we are all gift givers: where we unconditionally help the vulnerable and those less fortunate than ourselves; where we help those who find themselves in a bind, unemployed, on the streets, needing a second chance; where we wear masks so that we don't unwittingly infect other people. Just imagine an America where compassion, support and understanding for others reigns over selfishness and petty indignation. We should help each other get through these hard times.

double whammy

Wednesday night Calvin suffered another double whammy: a grand mal at 7:30, then another one at 1:45 a.m. I had meant to get up at midnight to give him an extra dose of THCA oil hoping to avoid the second seizure, but since Calvin slept soundly in the wake of the first one, forever sleep deprived I snoozed right through.

In eight days Calvin suffered eight seizures (four grand mal and four focal ones.) It's not a good spate, and he remains lethargic with little appetite. I can see he's losing weight. As I laid next to him yesterday morning for hours, my mind raced over so many vexing thoughts and unanswered questions:

is this the anemia? is he oxygen deprived at night? is the calcium in the yogurt i give him at bedtime blocking the absorption of his antiepileptic medications? is the iron supplement triggering his seizures or causing some other stressor? should we try the palmetto harmony cbd oil again? it worked so well for a time. should we consider another antiepileptic pharmaceutical? would the drug treatment be worse than the seizures, like it has been in the past? would he succumb to their dangerous and troublesome side effects, some of them lethal? will we ever get our relatively lively boy back again? is he somehow slowly dying?

I imagine that last question might come as a shock to some of you. But this is how we—the mothers and fathers of children with epilepsy and other chronic and acute conditions—think. I remember a time when Calvin, because of a high dose of a powerful antiepileptic, didn't smile for a year. I feared I would never see his cute, dimpled grin again. I remember a time when I cried every day with a child who had become a raging little monster. I remember a time when Calvin was two when Michael and I sat next to his hospital bed preparing for his death during a forty-five minute seizure that wasn't responding to emergency medication.

Today, again, I lay with Calvin on the green couch as he catnaps. We have walked outside only about once in over a week. Thankfully, from our cozy spot in the corner of the house we can see the garden and all the lovely trees in their yellow, chartreuse and orange glory. An unknown donor dropped off some soup and cake yesterday. It's raining and the rhododendrons are super happy. The house is quiet. I'm optimistic about a sea change come the election. I have hope for the future, despite these double whammies.

a familiar hangout

on the road again

For the first time since last October, and about the third time in a decade, the three of us, plus Smellie, went for a mini vacation. Last weekend, we took a scenic drive into the orangey, autumn hills of Rangeley, Maine on our way to Bald Mountain. We settled into a rustic lakeside cabin where we enjoyed all kinds of weather, from a clear, still Friday in the high-forties, to a stormy, seventy-degree Saturday, to a windy, bone-chilling Sunday morning. 

Regrettably, on our first night, Calvin suffered at least three focal seizures—the insidious kind which have been diminishing these past several months. The next day he had fourth one. As a result, Calvin spent the entire weekend convalescing in bed. Michael and I took turns sitting or lying beside him in a bedroom that, by way of a front room window, had a narrow view of the lake and some graceful birches. Sadly, Calvin wasn't able to step foot outside the cabin on his own. The only time he went outside was the brief moment when Michael carried him onto the porch and held him in his lap to watch a dramatic lightening display across the lake.

Luckily, Calvin wasn't hyper or feverish or manic or restless; he was content to nap on and off all weekend, recovering from his seizures or whatever else was ailing him. At dinnertime, he slept soundly enough (baby monitor within inches of our ears) for us to enjoy our meals which we shared very responsibly—physically distant at cocktail hour, masked-up when necessary, virtually al fresco at dinner—with our dear friends who rented the cabin next door.

It felt good to spend time enjoying a rare change of scenery—a quiet space near the water with a big sky and a clear view of the sunset. Smellie frolicked on the beach. We ate delicious food, drank sublime wine and a tiny bit of bourbon. Best of all, we laughed a lot with our friends with whom we share a similar sense of humor and cynicism, and who know our situation better than anyone because our sons, both our only children, have a lot in common.

After two days without our ridiculous creature comforts, it felt good to get back home and to settle into the familiar, to stroll in the garden, walk Smellie in the open fields, and eat dinner to music in front of a rolling fire in the wood stove. If all goes well, maybe we'll try getting on the road again next year.

decade

Like the pandemic, my son Calvin causes time to expand. Perhaps it's his protracted development—exponentially slower than watching paint dry or grass grow—which makes time-space stretch so impossibly. Unlike other parents, Michael and I don't experience fleeting years between diapers and high school graduation, because as the years pass, our boy never really grows up; he's much the same now as when he was little, though thankfully a bit less manic than when he was taking very high doses of three powerful antiepileptic drugs (see below).

Life with Calvin is a paradox in that, though time nearly stands still, it's astonishing to think that he was only six when I wrote my first blog post a decade ago. Maybe it's the writing that moves things along and makes one monotonous day different from the last. Maybe my prose and occasional poetry—or more so, perhaps, the musing that leads to them—are what inject meaning and richness into a life which otherwise might be mind-numbingly tedious, dull and unfulfilling. And how curious to think that, had Calvin not come along, I might not be writing at all. I might be stuck in a stressful, thankless job designing clothes for a hierarchical, outdoor catalog company. I might not be thinking and working so seriously to reveal purpose, to explore myself and others, to underscore and try to right injustices. I might not be considering life from the perspective of disability and other forms of marginalization, and their particular aspects of everyday living which are still unseen by—though not necessarily hidden from—too many Americans.

 

So, ten years, 2,024 entries and 1.3+ million hits since my first blog post, back when I didn't even know what a blog was, I am indebted to Calvin, and Michael (whose idea it was to write a blog) for helping me celebrate what has become a labor of love.

   

Calvin back in August of 2010, not long before I embarked on this blog.

the color of life

his steely shriek pierces the quiet of the night. we rush to our son's side. on his back, his limbs are stiff and crooked like rigor mortis. his face is twisted into a ghastly grimace. we strip his covers, roll him on his side, keep his feet from getting hurt. after ninety seconds the violent spasms slacken. he gulps and gasps as if half submerged. something impedes his ability to breathe. mucous? drool? his blue eyes are wide and looking frightened. fingers dusky. cheeks ashen. after some successful breaths, the color of life bleeds back into them. 

fifteen years of this curse we've endured, never quite getting used to it. the feel is gray and heavy. this time, the fear of his dying looms. if he can't catch his breath, what should we do? what can we do? we take turns sleeping with him. feel his heartbeat and breathing. some hours later, another fit occurs. this one is slightly worse. after the spell, our boy is restless. headachy? panicked? confused? in the blackness he reaches out to me. pulls my head to his, but then tries to launch himself out of bed. this repeats on end. we get a few hours sleep at best.

sunup, outside it's gorgeous. green and yellow, blinding white and orange, belying my blues. i walk the dog across an emerald field draped in dew. the trees are talking to me. they seem to know what has happened. i see a few people. ones in their bubbles don't ask about my son. i don't bring him up. it doesn't matter. in some ways i embrace a heart that feels indigo and alone. still, angst burns in so many reddish directions—seizures, dreams, too much yet not enough to do. i both dread and crave the election. the nation is coming unglued. we need a beacon to unite us, come to our rescue. walking home, i wonder if i can save my son, breathe the color of life back into him if i ever need to.

Calvin during the end of a seizure, 2013

on voting

This morning, I slid into my favorite jeans, chambray linen shift, denim jacket and studded, black ankle boots. I even put on a necklace, because today I celebrated a special occasion: voting! After loading Calvin and Smellie into the car, I drove out to Simpson's Point. Beneath a sky the same gray as the restless sea, I carefully filled out my absentee ballot in my lap. After making certain that I'd made no mistakes, I stuffed and sealed the envelope, signed the back, then headed to our town hall where I popped it into the ballot box.

Today, I didn't just vote for my own interests.

I voted for my son Calvin and others like him who have preexisting conditions, and others unlike him whose healthcare is in jeopardy as the Affordable Care Act is being actively fought before the Supreme Court by an administration that has no plan to replace it.

I voted for essential workers who risk their lives every day during this pandemic—still, without access to proper PPE or coronavirus testing—to harvest our food, ring up and bag our groceries, care for our elderly and infirm, run our public transportation, put out fires, collect our refuse, teach our children. I voted for those in the service industry who cater to our every whim even when maskless others put them and their families in danger. We need an administration that takes this virus and its hazards seriously and lays out a plan for mitigating it.

I voted for supporting working women who continue to do the lion's share of housework and childcare while their careers suffer, especially amid a rampant pandemic. We need universal childcare and paid family leave.

I voted with scores of my African American friends, neighbors and acquaintances in mind, because their basic civil rights continue to be violated by harmful policies and practices in a nation that has not yet lived up to its original promise of equality for all. We need an administration that acknowledges our nation's sordid history and, in no uncertain terms, condemns police violence and White Supremacy.

I voted for the right of my female friends, their mothers, sisters and daughters to control their own bodies.

I voted for my gay and lesbian friends whose right to marry those they love is in the hands of a Supreme Court whose conservative justices have shown to value dogmatic religious freedoms over fundamental personal ones.

I voted for the Dreamers who were brought to this country as children and who are American in every way but on paper. They deserve a path to citizenship.

I voted for disabled people who—still marginalized—may not be able to make it to the polls and who might have great difficulty casting their votes by mail.

I voted for those whose votes are actively being suppressed, whose polling locations have closed, who've been wiped from the records for simply having not voted in past elections, who don't have easy access to the polls, their town hall or to their local drop box.

I voted for those who have been separated from their family members because of this administration's harsh and discriminatory immigration laws and practices.

I voted for former felons—no doubt many who are innocent of the crimes for which they were convicted—who, despite having paid their debt to society by doing time behind bars, continue to be disenfranchised by policies meant to keep them in the margins of society and to stifle their voices.

I voted for everyone who lacks access to affordable healthcare. I voted for students who are drowning in debt. I voted for a fair and living minimum wage. I voted for the party that wants to expand access to contraception and whose policies are known to greatly reduce abortion. I voted for a party that champions fair wages, peaceful protest, equal rights no matter what gender or sexual preference. I voted for the restoration of environmental regulations. I voted for the party which advocates for a progressive tax code so the wealthy and big corporations pay their fair share. I voted for a party that advocates, elevates and nominates—in significant and meaningful numbers—women and people of color. I voted for the wise, experienced and measured leadership that trusts and respects experts and facts and science.

Vote early if you can. Vote in person if you are able. Vote absentee if you must, and drop it at your town hall if you can. Click here to find out how to vote in your state.

what keeps me up at night

stormy weather. rampant pandemic. restless child needing to be covered. missing san francisco. dreams of chickadees trapped in leaky closets. thoughts of dantae. concepts for blog posts. this critical election. smellie snoring. major rainfall on a red metal roof. unjust nation. dread of a long maine winter keeping calvin home from school. reckless president. trivial issues. fear of looming seizures. unanswered emails. phonecalls i haven't returned. manipulative and deceitful people. boisterous students outside our window. careless americans. fears of death. white supremacy. wretched news. classic nighttime angst. thoughts about tomorrow.